Bile Duct Cancer at 27: Morgan’s Path to Answers, Care, and No Evidence of Disease
When Morgan first began her bile duct cancer (intrahepatic cholangiocarcinoma) experience, she was 27 years old, thriving as a full-time hairstylist, and working 10- to 12-hour days. (Editor’s Note: Intrahepatic cholangiocarcinoma is a kind of bile duct cancer that forms in the liver.) She describes those late-20s years as the best time of her life, until subtle but alarming symptoms started to show up. Fatigue, dark urine, itching, clay-colored stools, and unintentional weight loss crept in, while photos later revealed early jaundice she hadn’t recognized in real time. Even as her body signaled that something was deeply wrong, her concerns were dismissed as possible urinary tract infections, lupus, or stress.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
As her bile duct cancer experience unfolded, Morgan repeatedly sought care from primary care clinicians, urgent care clinics, and emergency rooms. She kept hearing that her blood work looked normal, that she was “young and healthy,” and that she should hydrate, rest, or even change laundry detergent. Inside, she knew that this did not add up. Months later, severe pain under her right ribs woke her very early one morning, and a trip to the hospital led to scans that showed something blocking her bile duct. She was initially told that it was a tumor but a noncancerous one, scheduled for a liver resection, and reassured. After surgery, a physician walked in and said, “I’m so sorry I failed you.” The tissue showed intrahepatic cholangiocarcinoma, and 75% of her liver had been removed.
That moment transformed her life. Morgan talks about a light switch flipping: from then on, she saw each day differently and felt determined not to leave her loved ones behind. When her first oncology team hesitated about chemotherapy and seemed unfamiliar with this rare cancer, she decided to get a second opinion. Research led her to Mayo Clinic, where a coordinated team created a clear plan: fertility preservation at 27, chemotherapy, and a second major surgery to remove her main bile duct and perform another liver resection.
Today, Morgan has no evidence of disease. However, she lives with the reality that intrahepatic cholangiocarcinoma is often described as a terminal illness with a high chance of recurrence. She speaks openly about “scanxiety,” PTSD-like triggers, and the emotional weight of ongoing surveillance. At the same time, she has chosen to live as fully and presently as possible. She serves on the board of the nonprofit Team Cure Cholangio, investing in research and awareness, nurturing her relationships, and encouraging other young adults to listen to their bodies, seek second opinions, and put their health first.
Watch Morgan’s video above and scroll down to browse the edited transcript of her interview for more on her story.
Listening to persistent symptoms like fatigue, dark urine, itching, clay-colored stools, and weight loss was crucial in her bile duct cancer experience, even when early tests appeared “normal.”
Self-advocacy made a life-changing difference: Morgan kept returning to clinicians, asked for more testing, and ultimately sought a second opinion at a major cancer center when care did not feel aligned with the seriousness of her disease.
Comprehensive cancer centers can offer coordinated, multidisciplinary care, including fertility preservation counseling, chemotherapy planning, surgery, and radiology review — all aligned around patients’ goals.
A universal truth reflected in Morgan’s story is that patients know their bodies best; when something feels wrong, it is important to keep speaking up until someone truly listens.
Morgan describes a clear transformation: From wanting to “crawl into a cave” and stay quiet about feeling unwell, to becoming an outspoken advocate, living in the present, setting boundaries, and helping other people with cholangiocarcinoma find hope and community.
Name:
Morgan O.
Age at Diagnosis:
27
Diagnosis:
Bile Duct Cancer (Intrahepatic Cholangiocarcinoma)
Symptoms:
Fatigue
Nausea
Severe abdominal pain
Dark urine
Itching
Clay-colored stool
Significant weight loss
Jaundice
Treatments:
Surgeries: liver resections
Chemotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Why I share my bile duct cancer (intrahepatic cholangiocarcinoma) story
I want to raise awareness of this awful disease.
I was 27 when I was diagnosed, and I think the more awareness, the more research this cancer will get.
My life at 27 and getting diagnosed
So I was 27 years old, and I was a hairstylist full-time, working 10 to 12-hour days. Crazy. Honestly, it was the best time of my life, my late 20s.
And then I was diagnosed with intrahepatic cholangiocarcinoma, which is a bile duct cancer that forms in the liver.
So yeah, that happened, and then it just changes your life.
Early symptoms and red flags before diagnosis
I was fatigued. I had dark urine at the time. And then eventually I started turning jaundiced, but I didn’t realize it. Now that I look back, I see it in pictures.
But it was the itching of the skin which was another red flag, and your stool starts to get a clay color. So those were all the symptoms.
My long path to a rare cancer diagnosis
So I was just going to my primary care, and I’m just like, “Listen, I might have a UTI. My urine’s a weird color, and I’m just tired.” You just know your body and how you don’t feel well. There would be random times where I was just nauseous here and there. So then they were like, “All right, we’ll do blood work, we’ll do this, we’ll do that.” And I just went to my primary. I went to MinuteClinics because you’re always on a busy schedule.
But they just dismissed me and said I had lupus, and, “Eat right, make sure you stay hydrated,” all those things, when really, I knew something was not right. Staying hydrated, yes, I was hydrated; it didn’t make sense.
Having to self-advocate when doctors dismiss symptoms
I was going to the emergency room, and I was just like, “I don’t feel right. Something’s wrong. Can you just do all this blood work? My primary care doctor is saying I have lupus.”
And they were telling me, “Well, your blood work isn’t showing that you have lupus, so you’re just a healthy individual, and we just don’t know what to tell you. If you’re itching, maybe change your detergent or get more rest.”
Honestly, you really have to tell them and just keep going and going and telling them something is not right. You can’t just dismiss it and let it go.
How undiagnosed symptoms affected my daily life
I honestly wanted to crawl into a cave and never come out because my family was worried about me. They could see that I was losing a ton of weight. And everyone, I think, was getting annoyed at the fact that I just didn’t feel well.
But I didn’t want to say I didn’t feel well anymore because I felt like everyone was just tired of me saying I didn’t feel well. So I just kept it in, and I’m like, “Well, this is normal.” And the last thing you think about is having a diagnosis, the way I had.
But you have to keep going to every doctor, check your boxes, and you have to be your own advocate. That is my main message. I will never go back and just let them tell me what I have. You have to make sure you know.
The night everything changed: getting my cancer diagnosis
So after almost, I want to say, 9 to 10 months of just going to the doctors and just being like, “Hey, I don’t feel well. This and that. Oh, it might be a UTI. Whatever. Change your detergent, put lotion on, it’ll stop the itching,” I woke up at like one in the morning, and I was super nauseous, having severe, severe pain on my upper right area, right under my ribs.
And I’m like, “I’ve got to go to the hospital. Something’s not right.” So I call my mom, and I’m like, “Hey, Mom, does anyone have any kidney stones or anything crazy in the family that it could be?” And she’s like, “No, you’ve got to go to the hospital.”
And once I went to the hospital, that’s when my entire life just shattered. I got a CT scan, I got an MRI, and an ultrasound, and they’re just like, “Listen, you have something blocking your main bile duct, we see, but it doesn’t look like anything to worry about. So we’ll send you in an ambulance to Philadelphia to get it more looked at for an ERCP.”
Being told it was “not cancer” and then hearing “I failed you”
And that’s when I woke up, and they were like, “Hey, we tested your tumor, and it is non-cancerous, but just a little tiny bit of the edge was precancerous. Nothing to worry about.” And they were like, “Listen, we’re going to cut it out, get a resection in four weeks, and you’ll be fine.”
So, in February of 2023, I woke up from my resection. It was 6.5 hours. And they were like, “Surgery went okay, we’ll touch base tomorrow.” And the doctor walked in, and he said, “I’m so sorry I failed you.” And I’m like, “What? What do you mean?”
And he said, “You have cholangiocarcinoma, and you will see an oncology team tomorrow morning.” And that’s when my entire life changed. They ended up taking 75% of my liver at that time because they cut it open and realized that they had cut through my cancer tumors and spread everything. So that was bad. And I was 27. So you don’t want to Google “cholangiocarcinoma.”
Processing a rare cancer diagnosis at 27
It changes you.
From the moment that they told me that to today, it’s definitely like a light switch went off, and I look at life with a whole different view, and I really am grateful for every day.
My mindset: choosing to fight and refusing to give up
I was in shock. Literally in shock. But in my head, I knew I was going to beat it. In my head, I knew I wasn’t going to let this end my life.
Whether they were going to tell me, “Listen, you only have a percentage to live for the next five years,” I just didn’t even listen to anyone. I just knew in my heart I wasn’t going to leave anybody behind. “In my head, I knew I was going to beat it.”
I’m stubborn, and I just know what I want. I guess I was born with it.
Why I sought a second opinion and chose Mayo Clinic
I saw the oncology team, and they were kind of just like, “We could do this, we could do that. You’re not strong enough for chemo, so we might wait a few months.” And I felt like they didn’t know the type of cancer. They didn’t really understand that type of cancer because it’s so rare, and only like 10,000 people are diagnosed with it a year.
So I was like, “You know what? I need a second opinion. Something’s just not right.” So I highly, highly suggest for anybody out there, always, always, always get a second opinion, no matter what. Even if you love that person, it doesn’t matter. Always get a second opinion.
And that’s when they really told me, “They cut through your tumors and spread it, and this is a real big situation. You need to be on chemo right away so it doesn’t spread.” So I just googled “top ten hospitals in the United States,” and Mayo Clinic showed up as one for cholangiocarcinoma. So that’s when I just said, “I don’t care, I’m going to move out to Minnesota, see what they say, and get treatment.”
Putting myself first to get the best cancer care
Honestly, do whatever you have to because that should be your main priority. You’ve got to change your mindset and just say, “Listen, I want to be here, and I’m going to do whatever I have to do to be here in this life,” and just honestly fight.
You can’t go back into feeling sorry for yourself, and I know that’s so hard, and you do get in those moments, but then you’ve got to pull yourself back up, whether it’s having a good family, friends, just people that support and love you. Just try not to get in that mindset and do whatever you have to do to basically survive, 100%.
Moving to Mayo Clinic: My experience at a comprehensive cancer center
So I literally just got in the car and just drove to Minnesota, and I lived out there for about seven months. My parents, everyone, were back home, and it was just one of those things where I’m like, “Mom, Dad, I love you, but if you want me to be here, I’ve got to do this.”
So when I went out there, they read my case, took me right away, which I was so grateful for. They made sure I was getting fertility treatments because I was 27 at the time, and they were like, “Listen, this is not going to be fun on your reproductive system, so we want to schedule all your appointments for that to make sure, because you’re a woman in your late 20s, you want to make sure that if you want a family one day, just have a consultation at least, and do that.”
They did that, and then I went to oncology, and they just said, “Listen, this is your game plan. We’re going to start you on chemo in two weeks.” They had a surgeon right there, and they were like, “If we can operate again, this is what we’re going to do.” I saw radiology. They just had a great team of doctors that, no matter what angle it went, they were able to figure it out and have me survive, basically. So very grateful.
My treatment plan: Chemotherapy and two major liver surgeries
So I started chemotherapy, which was not fun at all. But I did that for a few months, and then they were going to irradiate the spot in my liver where I still had positive margins. They looked and said it was not strong enough to radiate because radiation is super hard.
So they were like, “We can’t do that. The only thing we can do is do another operation and take your main bile duct out and hook up your intestines with it, and then cut a little bit more, just get a resection basically of the liver.” At that time, my liver did grow a little bit, so they were able to do that.
But they were worried about scar tissue and just a major operation like that a couple of months after. So my first resection was in February, and then the next one was in July. So it was two major surgeries back to back, which was a little tough. But again, I was willing to do whatever I had to do, and thank God they were able to operate because I probably wouldn’t be here today if they hadn’t.
Because unfortunately, if you irradiate the liver like that, especially after a long-term resection, the bile ducts, there would just be complications.
Ongoing healing: Physical recovery, PTSD, and “scanxiety”
It is still a healing journey, in a way. I think every day you get triggered by something, whether it’s a smell or just a touch, or if someone touches my arm, and that’s where the chemo was. There are definitely little triggers like that, like a PTSD, I want to call it.
Especially getting scans every three months to make sure you’re all right. Just walking in the hospital, your heart just drops. You just know. And honestly, I think every day is still a healing journey, and you’ve just got to wake up and look in the mirror and just say, “I’ve got this, and I’m okay,” and just be in the moment and be present.
The day I heard “No Evidence of Disease”
It was July, my goodness. I want to say the 20th or the 29th. Yeah, it was at the end of July.
It was honestly a blur when I look back at it. It becomes a blur just from everything and going through that shock, almost.
To go from where I was and all my symptoms to moving to Minnesota to being no evidence of disease…
I have no words. I have no words for it. That’s just that. It’s a feeling. It’s just that feeling of, like, “Thank you, God.” It’s unbelievable, honestly. It’s a miracle.
The hard aftermath: Living with a “terminal” diagnosis and fear of recurrence
Unfortunately, this cancer is a terminal illness, so it never really goes away in a sense. And the percentage rate of it coming back is high. So those are the mind games that it will play with you a little bit.
You want to look for the symptoms that you had before, and of course, there are some days where you wake up, and you’re like, “I don’t feel right. Something feels off.” And then your mind just goes back to, “Oh no, is it back?” Or, “Do I have to go get scanned real quick to make sure?” Because knowing that it’s a terminal illness and it can come back at any time, those are the mind games it plays.
How I mentally prepare for scans and blood work
I just tell myself, “Nothing’s happening to me, nothing’s happening to me, and I’m going to have amazing scans.” It’s just a routine.
I have to look in the mirror and say, “Everything’s going to be fine. It’s going to be clear. We’re clean. Everything’s good,” because it will bring you to a dark place if you let your mind go there and think about it.
Choosing to truly live my life after cancer
I honestly wake up every day, and I just tell myself I’m grateful for today and just be present. That’s just the first thing I do when I wake up. Because again, your mind wanders and you’re like, “Oh, well, I have this tomorrow, and I have this this weekend,” and I think it’s so easy that your mind wanders and goes to the future rather than just being in the present.
So I do that in the morning. And then currently I am on the board for a nonprofit fundraiser foundation, for a 501(c), and it is called Team Cure Cholangio. We raise awareness, of course, but we fund research for a cure for cholangiocarcinoma.
I really got involved with that and helping others, because when I was diagnosed, I just felt like I was lost. You’re on the internet, you’re searching, and you’re trying to have inspiration or hope or something to give you at least just something to get inspired or hope or anything, because you can go through a dark hole. So I really have been putting my time and energy into that.
Finding meaning, community, and love through cancer
Honestly, if I hadn’t gotten sick, I wouldn’t have met my boyfriend today. I met him at a fundraiser for, unfortunately, his father, who passed from the same cancer.
It honestly just brings you into a group of people who just appreciate day-to-day life. And if I didn’t get sick, I probably wouldn’t have met him and so many other warriors who help make a difference in the world today.
I hate to say that I went through this journey, but it honestly was all meant to be. And we can help make a difference in other people’s lives. So honestly, that’s just what I want to do.
Advice for young adults diagnosed with cancer
Honestly, when I was told, “Listen, I’m sorry I failed you, you have cancer,” in my head, I thought of things I should have done. I shouldn’t have put the things I wanted to do on the back burner in the moment, whether it was because of money or something else.
Just do what you want to do. Don’t care about what other people want to do. Do what you want to do, because you don’t want to look back and regret, “I should have gone to that concert, that’s my favorite musician,” “I should have, could have, would have.” Just do it.
Obviously, don’t do things above your means, but do things so you don’t look back and regret. Because I looked back and I was like, “I should have bought that dress for that event,” or, “I should have done this.” Just do what you want to do.
What young adult cancer awareness and better care mean to me
Sit and listen. Refer someone to another doctor. Don’t just tell them and dismiss them, “Oh well, I’m sorry, you’re healthy, you’re young,” whatever. Don’t dismiss their symptoms.
They’re literally coming out and telling you, “I don’t feel right,” and you know your body the best. So the doctor can’t tell you, “No, you’re fine.” They should just sit and listen and try to make sure they’re thoroughly going through every single symptom.
Because at the end of the day, it’s your life. It’s not their life. It’s not his, her, whatever. It’s your life. And you’ve got to be the strong one and be like, “Listen, this is my health, and that comes first.”
The hardest part of the last few years
I would say putting others first before myself, even though I was going through the hardest times of my entire life. I was never putting myself first and being like, “You know what, do this, do that for yourself.” It was always for others.
And I love everybody, but I think you should put your health first. Whether it’s your sleeping — eight hours, seven, eight hours a day — or whatever it is, always put yourself first. Always, always, always. That’s definitely number one.
Learning to set boundaries and put myself first
Definitely set boundaries. Definitely be like, “You know what…,” because going through something like that definitely changes you. You’re tired, your body doesn’t feel the same way it did prior to everything that happened.
So definitely set boundaries and be like, “Listen, today’s just not a good day. I’m sorry, but I have to do this for me. Bottom line. It doesn’t mean I don’t love you, but I just have to do this for me.”
And it’s hard. It’s really hard. But that is just the main thing. Definitely put yourself first.
My final message: Be present, and be grateful
Just live in the moment and be present. Be grateful.
Finding Her Voice: Anjee’s Path Through Metastatic Kidney Cancer
Living with stage 4 kidney cancer (clear cell renal cell carcinoma or ccRCC), Anjee describes her experience as both devastating and clarifying, reshaping how she sees her body, her time, and her purpose. She first noticed blood in her urine in October 2022, a subtle but alarming change that her instincts told her could not be ignored. Despite normal follow-up labs and repeated reassurance that everything looked “fine,” Anjee kept pressing for answers because she knew something in her body felt off.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Before kidney cancer, Anjee led a very active, community-centered life. She worked multiple roles in education, was deeply involved in her church, and regularly did boot camp–style workouts and long walks with her husband. Even at a higher weight, she was physically strong and socially busy, often hosting Bible studies and gatherings at home. That full life made the escalating symptoms, including intense abdominal pain, persistent bleeding, and mounting fatigue, all the more jarring.
Over months, Anjee navigated delayed referrals, insurance changes, and appointments that were scheduled many months out despite her growing concern. When a urologist finally ordered comprehensive testing, CT scans revealed a massive tumor in her left kidney. Within ten days, she underwent a radical nephrectomy; pathology confirmed kidney cancer, specifically clear cell renal cell carcinoma, with spread into the renal vein, upstaging her to stage 3. Later scans in September 2024 showed metastases to her lungs, and her diagnosis was updated to stage 4 kidney cancer with rhabdoid features.
Anjee has since moved through multiple lines of treatment, including immunotherapy and now an anti-cancer medicine that counteracts a protein promoting cancer growth. Each treatment has brought its own mix of side effects, uncertainty, and cautious hope. She lost significant weight, endured severe fatigue, gastrointestinal issues, skin problems, and infections, yet continued to work, travel, and stay involved in her church and young adult Bible study group when she could. Anjee refuses to “just live with cancer” and instead focuses on finding ways to thrive, whether that’s walking with her husband, mentoring colleagues, or making it from the bedroom to her home office on hard days.
For others facing kidney cancer, Anjee emphasizes self-advocacy and community. She urges people to listen closely to their bodies, push back when symptoms are dismissed, and seek out support from church communities, family, work, and online kidney cancer groups so they remember that they are never alone in the experience.
Watch Anjee’s video and read through the edited transcript of her interview below. You’ll learn more about her kidney cancer experience.
Listening to your body matters; she trusted that early blood in her urine and a sense that “something was off” meant she needed answers, even when her labs looked normal.
Delays from insurance changes and long referral waits can be dangerous. Anjee encourages patients to speak up, ask more questions, and push for timely imaging and specialist visits.
Her transformation shows up in how she moved from feeling dismissed and scared to becoming a fierce advocate, actively coordinating her care, challenging denials, and insisting on options.
Thriving with stage 4 kidney cancer for Anjee means redefining what is possible: traveling when she can, mentoring at work, hosting Bible studies, and savoring time with her growing family despite fatigue and ongoing treatment.
Her experience shows us all that you are not “overreacting” when you advocate for yourself. Your lived experience is evidence, and it deserves to be taken seriously.
Name: Anjee A.
Age at Diagnosis:
46
Diagnosis:
Kidney Cancer (Clear Cell Renal Cell Carcinoma With Rhabdoid Features)
Staging:
Stage 4 (after initial stage 2 and stage 3 diagnoses)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
My name is Anjee, and I am from Austin, Texas. I have kidney cancer, clear cell renal cell carcinoma, stage 4 with rhabdoid features, which is very unique.
I was originally diagnosed as stage 2. Then, when I had the surgery, I had a radical nephrectomy, and when they took out the tumor, which had gone to the renal vein, they then diagnosed me as stage 3. That original diagnosis was in September of 2023. Then I went to stage 4, clear cell renal cell carcinoma, but it had metastasized in September of 2024. So I was first diagnosed in September of 2023, and then in 2024, I went to stage 4 because it had metastasized to the lungs.
There were other mets where they weren’t sure what they were in my liver and my lymph nodes, but after a biopsy of the liver, it was determined that it was not cancerous, and the lymph node could not be biopsied. But at this point, it’s gone; they don’t really know if it’s just so small that it can’t be detected, so we’re still monitoring the lymph node. But at this point, the metastasis is only visible in my lungs.
My life before kidney cancer
Life before cancer was a little different because I kind of transitioned into a new job right before I was diagnosed with cancer. But at that time, I had been working my job as a teacher, as a campus administrator, and now in an office setting. It was still wake-up-early.
I’ve always worked at least one full-time job. There have been times when I’ve even worked a part-time job with my school district, whether it’s been tutoring students or doing something like that. At one point, I was also going to grad school and was very active at my church.
Before my cancer treatment, I was always very physically active. I was a lot larger, at least 100 pounds bigger than I am now, but I was very active. I was doing Camp Gladiator 3 to 4 times a week. My husband and I would go on walks; he would run, and I would walk.
We’ve always vacationed because my husband and I both work in the school district, so we have matching days off. When we would go on vacations, we would hike; it was just a lot of activity, even though I was larger, definitely much heavier. I was very active and very strong in the sense that I could do things.
We hosted Bible study at our house; we’re very active in church. Hosting things and constantly having people over and just doing all the things, and my friends always say, “You always do so much.” So I definitely had a very active physical lifestyle and just a very busy lifestyle, whether it’s doing something for church, hosting parties and birthday parties, or gatherings of any sort, and even the physical activity of being able to do Camp Gladiator or that sort of boot camp style workouts. I have never been a runner, but I’ve always been somebody who will do jumping jacks, burpees, crunches, and all those things. So it was a very busy life.
My first symptoms and diagnosis journey
The very first physical symptom was blood in the urine, and that would have been October of 2022.
Before that, I knew something was off; I just knew my body was off, but I didn’t know what it was. I had already had a hysterectomy in 2018, but I just knew something was off. I’ve always been somebody who would go to my primary care for regular yearly checkups and to my gynecologist for the well-woman exam as well, and my labs were always off, but then when we’d go for a follow-up, they were not off. But I knew something was off, so I would constantly go and say, “I knew something was off.” They’d be like, “No, your labs are fine; everything’s fine.”
I couldn’t explain why because there were no outward symptoms other than I just knew, and of course, being heavier, they would say, “If you lose some weight, you won’t be so tired,” and my friends and even my husband would be like, “You do so much.” I’m like, “No, but I know me, and I know I’m getting older, but there’s just something that feels off.” Labs would always come back normal after they were abnormal, and they weren’t ever out of a wide range, but I always felt like there was something just not right.
Blood in my urine was very light, and since I had had a hysterectomy, I shouldn’t have had blood in my urine because I don’t have periods. Had I had my period still, I would have never known that because I used to have such erratic periods that spotting would have been normal. But it’s been a couple of years since I had a hysterectomy, so why am I spotting? It was very light, but it was happening here and there. So I went to my gynecologist because I had a hysterectomy, trying to figure out if something was going on in my cervix or down there that I needed to be worried about.
My gynecologist said that everything was fine. They did biopsies and labs; everything looked great. But I said, “Yes, but I shouldn’t be bleeding. Why am I bleeding?” They’re like, “Keep an eye on it.” From October through November, it was just a handful of times, but because I’m pretty in tune with my body, I knew something wasn’t right, so I kept a little journal on my phone of the things that I was seeing and the color just to gauge for myself.
Then, probably in March of 2023, I started again a little more often. It was still light, but happening more often. Then, in March of that same year, I was at work and started feeling a lot of pain underneath my chest, kind of where the ribcage meets. At first, I was like, “Wow, that hurts.” It felt weird, and it didn’t feel like gas, but what could it possibly be? I doubled over in pain. My husband works in the same building, so one of my coworkers messaged my husband; she escorted me down to the first floor, where my husband met me, and he took me to my doctor’s office because they have a walk-in during the day. They saw me doubled over in pain; I literally could not stand upright. I was much heavier, weighing at least 220-225 pounds, so he couldn’t carry me, but I was in so much pain.
They did an ultrasound; “No, there’s nothing wrong, but we’ll send out an MRI order.” Kind of go home and wait it out because everything was normal. I’m like, “You literally see me doubled over in pain; I can barely stand upright.” But because everything was normal, they’re like, “Just send you for an MRI.”
Unfortunately, my primary care doctor at that time had been bought out by a different organization, so now that new organization was no longer covered in my network. Insurance was saying I need to find a new primary care that has never seen me and ask them to send the referral to radiology for the MRI. So it was this big back and forth, and then that symptom of pain just went away, so it became, “Whatever; I’ll deal with it later. I’m not in any pain anymore.”
My job gets really busy in the April-May time frame, and I wasn’t presenting any more symptoms, so I just stopped seeking answers. I did find a new primary care and established care, but I never asked them to do the MRI because the pain was gone. Maybe it was just gas; who knows?
But I did continue to have more bleeding, so I went back to my gynecologist, who, at the end of April or beginning of May, referred me to a urologist and gastroenterologist. But because I wasn’t presenting any more symptoms, they’re like, “We’ll see you in October.”
So here we are in May, and I have to wait five months. Because I was not bleeding to the point where there was actual blood, and every time they pulled urine for urinalysis, there wasn’t any blood showing up, even though they didn’t disbelieve me, there was no evidence. So, “We’ll see you in October.” By June, it was becoming more prevalent, more often, and more; it wasn’t just a little bit of blood, it was definitely way more blood in the urine.
Escalation and discovery
By the end of July 2023, it was Thursday night through Sunday, when literally every time I went to the bathroom, it was bright red; there was no doubt that there was blood in the urine.
I remember the first time I saw that amount of blood; I started crying because it was so much blood, and I actually cried more than when I was told I had cancer. That was because I had been telling these people something was wrong, and no one believed me. When I saw that much blood, I was like, “There’s something wrong; clearly there’s something wrong.”
That Monday morning, I went into urgent care; they’re like, “There’s something definitely wrong; we don’t know what it is, but you need to go see your doctor.” At this point, I’ve seen my doctor one time; this doctor does not know me. They had my medical records from 12 years with my previous doctor. I’m like, “You’re asking me to go back to a doctor I’ve seen one time.”
That’s when all the frustrations with insurance started. I called my gynecologist and told her there was something wrong, and about the four days of bleeding. ”Please get me to urology or gastroenterology; I cannot wait till October, and I do not want multiple appointments with this new primary care who doesn’t know me as you know me. You’ve seen me for 20 plus years.”
So they did; both a urologist and a gastroenterologist called me that same day and made appointments that week. The appointment with the urologist was sooner; I explained everything. They’re like, “We’ll see you in a couple of days; we’re going to schedule a CT scan.” I went in and did the CT scan, and they had a series of tests for the next two weeks, which, for me, was okay because these people are listening to me; they’re not dismissing me. Even though there were uncertainties, I felt glad they were listening.
It was a little odd going to the urologist because everybody in the waiting room was gray-haired, older, 60-70 year olds, even some on stretchers from nursing homes. I’m like, “Why am I here?” It was messing with my mind; am I blowing this out of proportion because I look 20-30 years younger?
The nurse practitioner and doctor took me very seriously, which I was grateful for because I kept getting “Your labs look fine” or “You’re overweight; maybe lose weight,” but that doesn’t explain blood in urine.
The diagnostic tests they performed
During that week at the urologist’s office, the first test that same day, before scheduling the CT scan, was labs, drawing blood, and urinalysis.
Even though the urine looked normal, the blood was off the charts. They scheduled a CT scan, sonogram, and cystoscopy to check the bladder to make sure it wasn’t perforated or something was wrong. The cystoscopy was the last of the two weeks, on a Friday.
When I went in, the doctor explained; I was in the gown, nurse was there. “We’re going to do cystoscopy, put a scope through vaginally to the bladder, take pictures.” He’s like, “I don’t think I’m going to find anything because your CT scans came back very concerning, and we’ll discuss that when we’re done.” I’m like, “Okay.” He did the test; “Everything looks good with your bladder. Get changed, and I’ll come back and discuss your CT scans.” Totally clueless; had no idea.
Afterwards, replaying, if I had used context clues, he was prepping me, but I wasn’t picking up that he was preparing me for the news. He came back with his laptop; “I want to show you the CT scans. This is your right kidney; this is what it looks like, a healthy, normal kidney.” I’m like, “Oh, look at my kidney; it’s so cute and pretty; she’s healthy, right?” He’s like, “Now look at this kidney.” I’m like, “What’s that?” “Yeah, exactly; that is a tumor. Your tumor has overtaken the kidney; your left kidney, you cannot even identify it because that blob is how big the tumor is.”
In my head, I’d dealt with ovarian cysts my adult life that were never cancerous, so “Okay, we’re going to take it out.” “We can’t remove the tumor without removing the kidney.” “I can live with one kidney, right?” “Do you understand what I’m telling you?” “How many days out of work?” Thinking 3-5 days. “A tumor this size that has overtaken the kidney; I’ve seen this before, more than likely cancer; we need to get it out.” “The whole kidney?” “Angela, you have kidney cancer, and we need to take that out to figure out if you’re stage 2 or 3.” That’s when it finally hit; I glazed over.
“Is somebody here with you?” “Yes, my husband’s in the waiting room.” He called the nurse to get my husband. As soon as I saw my husband, I started crying. The doctor explained to him the healthy kidney and massive tumor, said he would be the surgeon, and schedule as soon as possible. When he said “as soon as possible,” everything hit; it was a Friday, called Tuesday to schedule, surgery next Tuesday — within ten days. We’re not talking weeks; is the cancer growing all over? He was calm; “Pretty sure stage two; once pathology, we’ll know—2 or 3.”
My brain jumped to conclusions; my husband and I hadn’t had our tenth anniversary, previous failed traumatic marriage, now beautiful life with husband and stepchildren. “I can’t die; I have this beautiful life.” I’d spent my 20s-30s in a horrible situation; “This isn’t fair; I can’t die; I’m living such a beautiful life; kids getting married, grandchildren.”
My pathology report after surgery
I had the surgery on a Tuesday, and on Thursday morning, the urologist came in and told me pathology came back, unfortunately, at stage 3.
With kidney cancer, the size of the tumor staged it at stage 2, but when they went in to remove the kidney and tumor, the surgeon saw the renal vein had traces or signs of cancer. They removed the adrenal gland, renal vein, and the kidney with the tumor.
The pathology: the adrenal gland was negative, but the renal vein — which goes into the vena cava — had cancer, so it traveled out of the organ. So I was staged at stage 3.
Genetic testing and family history
I had genetic testing when I had my hysterectomy, specifically for breast cancer.
After my renal cell carcinoma diagnosis, my oncologist sent me for genetic testing. It determined that breast cancer and cervical cancer run in my family, but kidney cancer does not.
My first-line treatment plan: Immunotherapy after my stage 3 diagnosis
When I first met my oncologist in October of 2023, before I even met him, they sent me to get a full-body bone scan, a brain MRI, and labs. Then, when I did meet my oncologist, the MRI and the bone scan came back clear. While I was already diagnosed at that point as stage three, we started on pembrolizumab, which is immunotherapy.
My immunotherapy regimen was one dose every six weeks. I did that for 12 months. During that time, every two weeks I was having labs drawn, and every three months I was having a CT scan. I was having side effects and symptoms; for example, there were a couple of times that I had a really bad headache, so they sent me for another MRI. They did an MRI of my brain several times, as well as a bone scan, during those 12 months. Then, in September of 2024, they found that it had metastasized.
Hearing the kidney cancer had metastasized to stage 4
The week before I learned that it had metastasized, I had had the CT scan, brain scan, and bone scan. Again, I just knew something was wrong. I didn’t have any outward symptoms, but I just knew something was wrong.
As I mentioned earlier, I’m very involved in church and have a very strong faith. Throughout this whole time, even before cancer but especially during cancer, I’ve prayed a lot. I don’t know if that was God preparing me, but I just knew something was wrong.
My doctor actually called me. He did not wait for me to come into the office. They called me when they got the results that showed that there were mets in my lungs. I think that’s probably one of the reasons why I also knew something was wrong, because typically, my oncology team uploads everything to my portal. I can see on my portal when results come in. It had been longer than usual; usually it’s this many days, but now it’s been this many days and nothing’s happening.
My husband and I were actually picking up groceries. We do curbside pickup, and I was picking up groceries. The minute I saw my doctor’s office name on my phone, it was like this warmth fell over me. I just knew. I knew it was my doctor, and he’s calling to tell me that I have mets, that the cancer had spread. I just knew.
I put it on speakerphone because my husband was with me. He was like, “Well, it’s not the…” The minute he said, “It’s not the news we were hoping for,” I just knew. I wasn’t crying hysterically like I thought I would be. I thought I would be hysterical. It was just tears running down my face. Of course, my husband held my hand, and we were both looking at each other like, “What in the world? How?”
I think for me, the biggest reason why I was shocked, if that’s the right word, was that I had gone through so much in this year, going through this treatment, and for it not to work. That was my biggest thing. I will go through all the side effects. I had lost so much weight at that time — I had lost about 60–70 pounds because I couldn’t keep anything down. There would be nights when I would be literally in the toilet all night, either throwing up or having diarrhea.
I remember I would be like, “Okay, I’ll go through this so long as this is working.” I think that’s what was the hardest for me, because I was like, “I will deal with all the side effects, I will deal with the literal physical pain.” Not being able to walk because my feet were so dry and cracked from the side effects of the treatment. Not being able to wear certain shoes. All that stuff, I would always tell myself, “It’s worth it because it’s killing the cancer.”
So when you hear that it spread, it was like… all that. I got off the phone with my doctor. He’s an amazing oncologist. He had already talked to his colleagues at MD Anderson, and they already had an idea: “You’re going to come to the office and the appointment on this day, we’re going to discuss these possible treatments.” He definitely made me feel like, okay, this isn’t the end. It has definitely spread, but it’s not the end.
Because it had spread — at that point, we knew there were mets to the lungs, mets to the liver, and one of my lymph nodes — he said, “You’re going to come in, you’re going to see me, we’re going to talk. But before we can determine the next course of treatment, we need to have yet another bone scan, brain scan, and then you need to see a lung specialist so they can biopsy the seven mets to your lungs. We need to see if those are cancerous, if it is even cancer.” That’s what he was saying. It’s not what we’re seeing only, but we need to determine for sure.
So I had to get that biopsied. I had to get a biopsy of the liver. They said, “There’s no way we can biopsy the lymph node, but we’re going to send it off to another specialist to see if he thinks it’s possible.” I guess it was so close to a nerve or something that they weren’t sure if they were going to be able to do that.
That sent a whole other set of emotions, because it’s like, “Okay, we see spots, but we can’t even treat anything until we know what it is.” Everything needs to go through insurance to ensure that they’re okay with paying for me to even see a specialist. After that specialist, I see them, and we still have to see, well, is the facility that I’m going to go to in-network? Is my doctor in-network? Is everything in-network?
It felt so unfair to me because I’m like, I have been given this horrible news. On top of now having to process this, I have to ensure: are all the people, is the medication covered, are all these things covered? I felt like this wasn’t fair for me to have to be going through this horrible news. I have to be the one to call everybody to make sure, “Are you in my network?” Begging the insurance, please give me the prior authorization as soon as possible. Don’t wait, because the very first location that they had sent me to have the biopsy wasn’t covered in-network.
I’m like, “This makes no sense.” You’re my insurance. You know if it’s covered. Why would you even send me there? It felt to me like, “Why do you not have some sort of a patient benefits person that says, “Listen, we know — we are the ones that provide your insurance coverage, we know who we cover.” Why would you not say, “This is the list of the people that you can go to”?
Why do you just send this blanket denial and kind of like, “Oh well, lady, figure it out”? How unfair is that? I’m fighting for my life here, and I still have to go through these hoops. I’m grateful to have insurance, but it’s like, seriously, do y’all not see how unfair this is? It’s like you’re making me be the one to figure this out.
That’s when I became this very fierce advocate. Nothing against any doctor or even my insurance at that point, but in my mind, I was like, “Screw you, cancer. I’m going to do whatever the heck I have to do because you’re not— I don’t care if it’s insurance, I don’t care if it’s a doctor, you’re not taking my life. I will fight fiercely to the end to make sure I get whatever treatment.”
So I became very much more active. Whenever my doctor would say, “We’re going to be…” I’m like, “No, where is it going to be?” I started asking all the questions right up front before we started. “Where is it going?” “Nope, that’s not covered.” I would pull up everything on my phone. “Nope, that’s not going to work. Nope,” because at that point, I’m like, “I’m either going to sit here and become a victim, or I’m going to advocate for myself because no one’s going to advocate for me but me.”
Yes, my husband loves me. Yes, my doctor is amazing. But at the end of the day, I want to live, and I’m going to do whatever I have to do to make sure I give myself a fighting chance. I’m not going to get lost in the system. I’m not going to fall through the cracks. So I started to be a lot more proactive. I’ve always been a pretty proactive person, but it was like the stark realization of, no, this isn’t fair, and people shouldn’t have to deal with this.
Thankfully, I’m not so old that I’m not familiar with apps and stuff like that. But the runaround that people try to give you: “Well, you need to apply for that online.” I’m like, I’m on the phone with you. Just help me. I’m literally on the phone with you right now. This makes no sense. If I were 80 years old and I didn’t know how to get on an app, it shouldn’t matter. You’re literally on the phone with me. Just talk to me right now. It was very frustrating.
Conversations about prognosis and limited treatment options
At the very beginning, when I very first got diagnosed, at the very first meeting I had with my oncologist — at that point I had already looked at the statistics you find online. The worst thing you can do is Google your prognosis because I’m like, “I’m going to die in two years.” That was pretty much one of my first questions. I was the patient who went in with a laundry list. I had my phone with all my questions.
The very first thing that my doctor told me was the good news and the bad news. “The good news is that we don’t normally see somebody this young with this specific type. Usually, kidney cancer occurs in people 60 years old or older.” I remember when he told me, “It’s 60-year-old men who smoke and are overweight and have heart issues or kidney issues.” I’m like, “Okay, well, I was overweight, but that’s it,” because I wasn’t 60, I wasn’t a man.
He told me, “The good thing is that you’re young enough — I was 47.” The other good thing is that we’ve come a long way. While we don’t know how long you may have, it looks very promising that, even though statistically speaking five years is the typical prognosis, there are many people he was even currently treating that have been living 10, 15, 20 years with certain treatments he was recommending for me. So that was positive.
But then, after the one year when that first one treatment — I’m like, “Okay, well, that one didn’t work. So what does that mean for me? Now what?” “We’re going on to the second treatment.” What does that mean? Does that mean that now, instead of thinking I’m going to live for 10-plus years, we cut that in half? He’s like, “Same situation. There’s no way for us to predict. You are stage 4, and the rhabdoid features of the clear cell renal cell carcinoma are definitely what’s making your cancer a little more aggressive.” I’m like, “Okay, but what does that mean?”
He’s like, “Unfortunately, there’s no way for me to tell you how long you have. We’re just going to keep going. You have a lot of treatment options.” I learned later that “a lot” doesn’t really mean a lot. A lot is more than one, but it’s not really a lot. It’s definitely more than one option, but there’s really not that many. There’s probably about five or six, and that’s not really a lot.
At this point, I’m like, “Okay, I have about five or six treatment options, and obviously, in three to five years, there are trials. There are definitely trials, but those are just trials.” So there was never really a firm prognosis, nothing like that. Just kind of like, “Well, I know people who’ve lived on this treatment for 10 years or 15 years.” But then, when my body stopped responding to both the first and second line, he was like, “People have lived this long.” I’m like, “Well, the first one worked for one year, the second worked for 16 months. Now I’m on my third treatment. Gosh, could we at least get to two years before we say that this one fails?”
Third-line treatment: Belzutifan and living with extreme fatigue
I am now five weeks into my third line of treatment. I am now on belzutifan, which is a pill I take one time a day. It’s three pills total. It’s 120 mg, so each one is 40 mg — three pills of belzutifan every day.
In comparison to the second line of treatment, there are fewer side effects, but they’re more intense. I didn’t experience a lot of fatigue with the second line of treatment, but the second line of treatment was probably the worst in terms of even more weight loss. I had dropped all the way down to 112 pounds at one point and was constantly getting infections and stuff like that.
The majority of the side effects that I’m experiencing now are swelling of the hands and feet, but not all at the same time, which has been good, and it’s not been major swelling. It’s only been one day since I couldn’t actually walk because of the swelling.
But there is severe fatigue, which I did not experience in the previous treatment. With the previous treatment, I was like, “Well, if I’m not eating and anything that I’m eating isn’t staying in my body, of course I’m going to feel tired, right?” I’m able to actually eat now, which is amazing. Things may not taste correctly, but at least I can actually eat, and I can keep food down or keep food in. So that’s wonderful.
But the exhaustion is absolutely insane. I’ve never experienced this kind of exhaustion. I’ve been exhausted before with the fatigue you feel with cancer treatment, but not to this extreme, where I’m like, “Oh my God.” With this current treatment, I don’t get tired as many days, or at least in the five weeks that I’ve been on this medication, I haven’t been tired as many days. But when I do feel fatigue, it is extreme. The level of fatigue is beyond what I had experienced with my second line of treatment. There are not as many bad days, but when the bad days come, they’re really rough. There’s definitely a difference there.
My skin is clearing up, so I’m able to not have the pain of the open wounds from how peeling and dry my feet were. That was good. Same thing with my hands. I literally, before, couldn’t even open a water bottle because my hands were so cracked and dry, and my feet — I couldn’t walk. It was wild. Now, I can actually open things. That’s been wonderful, to be able to wash dishes and do things like cut an onion — things that I couldn’t do because I couldn’t grasp because of how dry and sensitive my hands or my feet were. So that’s been improving.
But the fatigue that I’m experiencing now is definitely crazy. It seems like — and my doctor and I are not really sure on this — we don’t know if it’s because it’s the cold and flu season, or if it’s because of how compromised my immune system is, but I definitely have been getting sick, catching things more now than before. So I’m not really sure what that is. We’re kind of keeping an eye on that. I have been going to my doctor more often right now, just because of everything that’s coming up that didn’t used to come up. So there’s that.
Thriving with stage 4 kidney cancer: Travel, church, and work
When I say that I’m thriving with cancer, I am not yet a survivor. I hope to one day be labeled that. I don’t want to ever say that I’m just living with cancer, because to me, when I hear myself saying that I’m living with cancer, I feel like I’m just accepting the cancer and doing nothing.
In the two and a half years that I’ve been diagnosed with cancer, my husband and I have continued to travel. We’ve visited Vietnam, the Dominican Republic, El Salvador, and Honduras. We’ve gone to different places in America to travel. When we go, we do as much as I can physically. While I haven’t been able to do the zip lining that I used to be able to do, we still do as many adventures as we can, even if it’s just a little tapered down. Maybe I’m not zip-lining — although I did zip line in El Salvador. I didn’t get to zip line in Mexico because I just wasn’t well enough to do that. So it’s not always the extreme adventures, but we’re still exploring the world.
Even in my daily life, while I’m not as active as I used to be, we just recently started — when I got diagnosed with cancer to begin with in 2023, we stopped hosting Bible studies in our home because everything was just too much for me. I was transitioning, and with the fatigue and all that. While we were still attending church and my husband was still committed to his ministry, there were a lot of things I had to back off on.
But just this season, we started hosting Bible studies again with the young adults — the 18- to 28-year-olds — and they’re amazing. They are awesome. They keep me young. They’re so helpful. They’re always going, “Miss Angela, we’ll help you with this.” They’re very helpful. Their help allows me to still be a help, even though I’m not doing the extreme amounts I used to.
I still try to host parties, maybe not as many and not as often, but I’m still hosting. I still go to work. I don’t always go in person, but I still stay as active as I can, working virtually. I go for walks with my husband when I’m able to. So for me, thriving is still allowing myself to do things, experience things, live, without accepting a mindset of “I just have cancer.” I obviously am in stage 4, so I will have this diagnosis for the rest of my life, but I’m not going to stop living, and I’m not going to stop experiencing life, even if going to work means just going from my bedroom to my office. I’m still going to go to work.
I think professionally, that’s where cancer hit me the most. In my mind, I had myself on this trajectory: I’m going to go from my position to the next level, to the next level, to the next level. I kind of had a five-year plan of where I wanted to be, still in the same school district I work in, because I’ve been there for over 20 years. I had a plan: in the next five years, this is where I see myself.
I think the first year was the hardest for me professionally, to think that I was thriving, because I really did feel that I was very stagnant. I felt like, “Oh my gosh, this is where I’m going to be.” This is where I’m going to end up retiring, as if that’s a horrible thing. But in my mind, it was such a blow to what I personally had for myself.
I’m learning to thrive in my job. I have not applied for any promotions, but I’ve asked my current director to, in a nutshell, be my mentor and help me take leadership roles. Even though I’m still in my position and my title and my salary are not changing, I said, “Let me take on some leadership roles, so that when my cancer is stable, and I’m no longer transitioning from one treatment to another, I can at least move up to another level in my job.”
Having a boss and a whole system, really, in my team and department that has allowed that to happen has felt like, at least now, I’m thriving professionally. For the longest time, that was the hardest thing. Every time I’ve ever had any scans, specifically brain scans, it’s always the thing that I tell my husband. I think that’s the only time I’m like, okay, the cancer is not responding, but my prayer is always, God, please. I know that bones and the brain are the first places that kidney cancer is supposed to spread to, which is what my doctor always says. So my prayer is always, God, please preserve my brain.
I am definitely no genius, but my identity has always been in being a knowledgeable person, somebody who can grow and do things. That’s always been important to me. So even though my brain has always been clear — no evidence of disease in it — the fact that I couldn’t thrive professionally, if you will, hit me initially.
Then I think I finally had to internally accept the fact that, okay, I may not have a change in title and I may not have a change in pay, but that doesn’t mean that I can’t mentor people. There’s a person that I helped to train and mentor, and she just actually became one of our leaders; she got promoted to a position that’s essentially over us, which, for me — previous to cancer, I would have been like, “That’s my job, I can totally do that job.” But I’m like, “Wait, I helped to mentor her.” So I feel like, to me, that’s winning, and that’s thriving. Even though I’m not in that position or that role, I feel like I’ve helped to get her to that place by showing her certain things. Of course, she has her own merit, and I’m not taking that from her, but in our area, I’ve helped her. That, to me, is a win. I’m like, “Okay, I’m thriving by helping others, even if I’m not the one in that position yet.”
So that’s how I feel like I’m thriving in life and thriving with kidney cancer, not just sitting back and waiting for days to just pass. I definitely have my terrible days where I can’t even get out of bed, but I refuse to let those days identify who I am. That’s why I’m like, I’m not going to just live with kidney cancer. I want to be thriving with kidney cancer.
My hope for the future: Grandchildren, better treatments, and easier access to care
My hope for the future is that we, in America and the world, will hopefully find better treatments for people with stage 4 cancer, including kidney cancer. Obviously, I hope to be at a point where I’m on a treatment that works for me so that I can hear “no evidence of disease.”
I have a grandbaby who’s going to be born in May, so I hope that I get to have years with my grandbaby. It’ll be my first grandbaby, so hopefully I’ll have more grandbabies in the future too. That’s my hope — that I personally will have a treatment that’s working for me, that will help me to be stable and to hear, “no evidence of disease,” for years to come.
Since July of 2024 was the last time I heard “no evidence of disease,” and then in September 2024 was when I heard that there was evidence of disease. So I hope to hear “no evidence of disease.” I hope that there are more treatments available not just for me, but for anybody who has stage 4 cancer, specifically kidney cancer.
I also hope that something happens with insurance so that people don’t have to go through this at whatever stage. When you hear the words, “You have cancer,” you shouldn’t also have to fight to get approval for treatments and authorizations. That’s not fair for any stage.
Advice for others with stage 4 kidney cancer: Build a support system and find community
If you’ve been diagnosed with stage 4 kidney cancer, my advice to you would be: you need to get yourself a very strong support system. That’s very hard, and it may look different for different people.
I’m very, very, very blessed, and I do not ever take for granted that I’ve been able to find, within my church family, a support system; within my biological family, a very strong support system; even in my work, I have a strong support system. Even online, I’ve been able to find several groups. The very first person who helped me face this — I was so lucky that I found her on Facebook in a large group. She happened to live here, and she actually went to the hospital the day that I was having my kidney removed. She went to the hospital and brought me flowers. I met her on Facebook two days before, and she came to the hospital, brought me flowers, and told me her story. We met for dinner later, after I had the surgery. The randomness of finding somebody online.
So your support system may not be somebody that you even know yet. I’ve met so many amazing people online, whether it’s a social media group or what have you. You are not alone. With stage 4 cancer, you may feel like you’re alone, but you’re not. If you seek that support system online, you will find an amazing group of people, in the worst way possible, but the most amazing group of people that understand you and get you.
There are times when I’m having the day before scans or the day before I find out results, and I’m like, “Nobody understands.” Even though I have a great support system, unless you’ve gone through scanxiety, you have no idea what that’s like. To be able to go online and have people say, “I got you,” and talk you down from the cliff, because you kind of get there. You’ll spiral, but they’ll reel you back in.
Definitely find that group. My oncology office has an online support system, but I’ve never used it. Your doctor’s offices may have those. I found mine through Facebook. But I’ve also now found a new community on TikTok. So there are all these different places that you can find a cancer community. You may have to think outside of the box, but you are not alone. Whether that’s your doctor’s office, your church group, TikTok, whatever — they are out there. You have real people out there who are going to walk with you.
Symptom: None; found the cancers during CAT scans for internal bleeding due to ulcers Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled)
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Itchy Skin, Night Sweats, and a Neck Lump: How Alexia Discovered She Had Hodgkin Lymphoma While Pregnant
Hodgkin lymphoma during pregnancy is rare, and Alexia’s experience shows just how easily early hodgkin lymphoma symptoms can hide in plain sight. She was a young mom in North Texas who, after delivering her second son, began having night sweats and intense itching that were dismissed as “just postpartum” and eczema. Months later, while pregnant with her third child, Alexia noticed a visible lump in her neck and crushing fatigue that caused her to fall asleep mid-conversation. What she and her doctors first treated as benign skin issues and normal pregnancy exhaustion turned out to be Hodgkin lymphoma.
Interviewed by: Tory Midkiff Edited by: Chris Sanchez
When an ER visit led to scans revealing a large mass in her chest, Alexia turned to her faith and her family. Even after an initial report incorrectly labeled her disease as non-Hodgkin lymphoma, an oncologist later clarified the diagnosis as Hodgkin lymphoma and recommended ABVD chemotherapy while she was still pregnant. Alexia and her husband were offered pregnancy termination as an option, but declined. They chose to continue the pregnancy while moving forward with treatment that was considered generally safe in that setting. She underwent 12 rounds of chemo with close, weekly monitoring by an OB specialist for her baby.
Their daughter was delivered early but healthy, avoiding time in the ICU, and Alexia finally received her first PET scan. When the chest mass did not respond as fully or as quickly as hoped to the first chemo drug, her team shifted to a new regimen with another one and immunotherapy, then moved toward an autologous stem cell transplant. Alexia describes the transplant hospitalization, days of chemo and ice chewing to protect her mouth, and long stretches away from her children as some of the hardest parts of her experience.
Supported by her church community, her husband, and her deep faith, Alexia returned home determined to savor everyday life — the laundry, diaper changes, and bedtime kisses she once took for granted. Today, her PET scan shows only residual tissue, and she continues regular scans while parenting three young children. She now urges other pregnant and postpartum people to trust their bodies, push past dismissive explanations, and seek further answers when symptoms like night sweats, relentless itching, and extreme fatigue don’t feel “normal.”
Watch Alexia’s video and read through the edited transcript of her interview below for the details of her Hodgkin lymphoma experience.
Persistent symptoms like night sweats, intense itching, shortness of breath, and profound fatigue deserve follow-up, even when they can be easily blamed on pregnancy or postpartum life.
When ABVD chemotherapy did not fully shrink her chest mass, Alexia and her team adapted to new treatments and an autologous stem cell transplant, underscoring that it is the disease and the regimen, not the patient, that “fails” to respond.
Community support from her church, her husband, and her children waving signs from the parking lot played a vital role in helping Alexia cope with long hospital stays and separation from her family.
A universal truth in this story: Our bodies often whisper before they scream. Listening to early signals and advocating for more testing can change the course of a diagnosis for anyone.
Through this experience, Alexia moved from brushing off symptoms to becoming a strong self-advocate who now encourages others to seek answers sooner and cherish the “ordinary” moments of life.
Name: Alexia S.
Age at Diagnosis:
24
Diagnosis:
Hodgkin Lymphoma
Symptoms:
Night sweats
Intense itching and rash on wrists, legs, and feet
Fatigue and falling asleep mid-conversation
Shortness of breath
Dizziness
Blurry vision
Appearance of neck lump and chest mass
Treatments:
Chemotherapy: ABVD, BV, and BEAM
Immunotherapy: nivolumab
Autologous stem cell transplant
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
In June of 2023, I had my second son, and I was experiencing night sweats, but I just assumed it was part of postpartum. I kind of ignored it and pushed it under the rug. Then later, in March of 2024, I started experiencing itchy skin. I got rashes on my wrists, on my legs from itching, and on my feet. It was just a really uncomfortable sleep itchiness. So I went to urgent care in May, two months later, after experiencing that itchiness. At urgent care, I don’t know if it was a nurse or a doctor, but she said it was eczema. She gave me this paper with different types of eczema on it, and then she prescribed me this cream. The cream kind of helped it, but it didn’t take it away.
After the itchy skin started, it was just something that I lived with. I would put that cream on, I would try to take cool baths, do all the things to try to make it not itch, because I thought I was living with eczema. So I was like, “Okay, this is my new life. This is eczema.”
Pregnancy with my third baby, and discovering a neck lump
After that, May, June, July, and August came around, and in August, I found out that I was pregnant. In September, I found out I was pregnant with a girl. Then, in early October, there was a lump on my neck, and it was so noticeable that other people pointed it out to me. I called my mom and said, “Mom, I have this lump on my neck. What do you think it’s from? What should I do?” She said, “Just wait two weeks. If it’s still there, then go get it checked out.”
I had looked some things up, and I thought that my family in the house was fighting a sickness. So I thought my body was just trying to fight that sickness. Two weeks passed by, and it was still there. My husband was begging, “Please, can we go get it checked out now? You’re pregnant. It’s both of you now.” So I said, “Okay.” We went to the ER, and I was just thinking they were going to give me antibiotics, send me home, and it would be gone.
When we got back there, they started doing lots of tests. One test led to another, and they said, “We need to check something else.” I knew they were concerned because they moved me back to a different room. It wasn’t just like, “Oh, we’re just checking you out a little bit.” They moved me back to another room. They did a chest scan, an X-ray, and then they saw something. They told me I needed to do a CT scan. Then they came back and told me, “We see something. We see something on your lungs, a tumor, a mass.” My first thought was lung cancer, but later it ended up being in my chest cavity.
In that moment, I went to the restroom, and I remember saying, “Okay, God. I trust you to do whatever you’re going to do.” I had my full trust in God because of my experience with my relationship with Him. After I got out of the restroom, I went back into the room, and my husband and I were just worshiping and praying because we were thankful that it was found. Whatever it was, it was found, and we were trusting and believing in the Lord.
Biopsy, initial misdiagnosis, and meeting the oncologist
After that, they did not send me home because I needed a biopsy. I stayed overnight, and they did the biopsy. They took it out of the mass on my neck and tested it. They said they couldn’t do anything else because I was pregnant. Then they sent me home the day after the biopsy, and we just had to wait for the results.
When the results came back, they were uploaded into my portal, and it said that I had non-Hodgkin lymphoma, which was later corrected when I saw the oncologist — it was actually Hodgkin lymphoma. If you look into it, they are two very different things. I had Hodgkin, and I was referred to an oncologist.
The first thing he did was give me the option to terminate, and we were like, “Absolutely not.” We were just going to figure this out. It was going to be figured out. He told me that if the mass got too close to my heart, my heart could stop, and then my baby and I would die. It was one of those things where I knew God had a plan. Later, he ended up calling me, and he was thrilled. My oncologist had spoken to a lymphoma specialist, and they found a regimen that didn’t have tons of research but was generally safe for pregnancy, and that was ABVD. They went over the effects and said I could lose my baby through every one. But that’s what we started.
Starting ABVD chemo while pregnant
That was in October-ish. In November, I got my PICC line put in. I couldn’t get a port because of how many weeks I was pregnant. You have to be a certain number of weeks, so I got my PICC line put in. I was in the hospital for a few days away from my kids, which was so hard because my first baby had just turned one.
After that, I started the chemo. We got it going. I think I was there every other week. Every other week, I was there all day, for about six hours. We did 12 rounds total, and then they had to stop it at some point so that her immune system wouldn’t be suppressed. I would also see an OB specialist, so they were always checking on her every week. I was probably at the doctor’s three times a week when I was pregnant. They were always checking on her, and I always got to see her.
Early delivery of my baby girl during treatment
Finally, at the end, the baby wasn’t really gaining any weight. They said, “All right, let’s just get her out early for her immune system, so she can get some real milk.” I delivered her on March 28, 2025. She was healthy, she was beautiful, and she didn’t have to spend any time in the ICU. We praise God for that. She was 5 pounds and so tiny, but she was still able to come home with us, and everything was great.
We brought her home, and I got to spend that time with her. It was so special because she had been through a lot with me already. She’s very special to me. All my kids are, but we went through something together that is not something you normally go through. I got to spend that time with her.
My first PET scan after delivery, and switching to BV chemo + immunotherapy
I got a PET scan in April. It was my first PET scan because I couldn’t get one while I was pregnant. They said the mass in my chest didn’t get bigger, but it was still not where they’d like it to be.
So they switched regimens. I went to BV and nivolumab immunotherapy. It was that combination. I got on that, and I think I did about three to four rounds. Then I did another scan in July. I was still able to function and work in the meantime. I was able to just be normal, live life, and I’m so grateful for that.
I was a little worried because I wasn’t sure how these chemo effects were going to be. I was very blessed with my last one, but I wasn’t sure. It was even better. It was very smooth. I got that next scan in July, and they said, “This is working great, phenomenal, it’s pretty much almost gone. You’re going to do, let’s say, two more rounds, and then we’re going to get you in to do a stem cell transplant.”
Why I qualified for a stem cell transplant
The reason I was able to get a stem cell transplant is that there are certain things — you can’t just get one. I qualified because the ABVD didn’t work as quickly as they thought it would. After that second scan, I rang the bell in September — I think it was September 11. I still had my hair at the time. It was in there strong; she was hanging in there. I got to ring the bell, and then I lost my hair in October.
That was okay because my identity is not in my hair, it is in Christ. So I was like, “You know what, this is okay.” He let me hold on to it for a really long time with all that chemo I was getting. I ended up losing my hair in October. I got my kids a book that was so cute. The mom was going through chemo, and it said things like “Chemo doesn’t like kisses,” just little things like that. They would kiss my head. It was really cute. I’m so thankful they make cute stuff like that. We read that book together as we went through that transition.
G-CSF shots, collecting my own stem cells, and Thanksgiving in the hospital
In November of 2025, I started the process. I got G-CSF shots to make my blood cell count go up. I started getting those, and then I got something called an autologous stem cell transplant, so I was my own donor. After I got those shots, they collected my stem cells. I actually have a picture of that, and it was so cool. The machine was just going, and I was able to collect — I think it was billions of cells; I can’t even remember the number — but I collected them all in one day.
I got a call at the end of the day that I went in, and they said, “You don’t need to come back. You collected them all in one day.” That was awesome because it feels really draining. It literally sucks out blood and cells and all that stuff, so it was pretty tiring after that experience. I went home and rested, and then I came back. I can’t remember the exact day, but I know I spent Thanksgiving there in the hospital.
Being away from my kids during transplant prep
It was really hard because I had to be away from my kids for a long time. At one point, right before I started chemo, I begged, “Please, can I see my kids?” I just wanted to see them one time before I really started the whole process. I was able to see them. They all came, and everybody sang “Happy Birthday” to me because my birthday was the next day.
They would also come visit me in the parking lot. They had these pictures and signs, and I could see them through the window. The signs said, “We miss you, Mom,” or “We love you, Mom.” It was so cute, and it made me even sadder, but it got me through it. Throughout that process, on the days I could, I would go for walks around the floor. You have to stay on that unit — no outside air. You just have to stay in that unit. We made the best of it. We would go for walks. I also had this little bike. We would watch movies. I decorated my room to be as comfortable as it could be.
BEAM chemo and the transplant day
The chemo regimen I got before the transplant was the BEAM regimen. The BEAM regimen is the chemo they give you during a stem cell transplant. I got that, and on the last day, you have to chew ice for hours. I was chewing and eating so many ice creams. Then my medicine was late, so my nurse said, “Sorry, you have to keep eating ice cream.” I was sitting there like, I never want to eat ice cream again. It was ice cream, ice, all the cold stuff.
After that was done, I got my actual transplant. I want to say it was on December 3. They gave me back my stem cells. That day, my body was just tired, so I slept all day through it. I slept through it. It only took a couple of hours to transfer the cells back into me, but I slept for hours, like eight hours. It only took about two hours to transfer the cells back into me.
The hardest days after transplant, and leaning on faith
After the transplant, I was feeling pretty good. I still had an appetite. Then there were those couple of days where I was at my lowest, and I thought, “Wow, this is tough.” To get me through those days, I would just remember what Jesus did for me, and I would say, “Okay, the Lord is my strength. I’m going to get through this.” It was a great refresh. It was rough in those moments, but when you’re reminded that He’s your strength, you’re able to push through it.
After that rough patch, it slowly started getting better. I got sick at one point, and I didn’t feel the symptoms. I didn’t know I was sick. They said I was probably asymptomatic, but it slowed my process of getting out. It kept pushing my discharge back. They said, “We’re going to keep you until, let’s say, Monday or Tuesday.” I had gotten sick on a Thursday or Friday before that. I started feeling better energy-wise. I felt recharged. I was done sitting there watching Christmas movies and riding my bike. I was done.
Pushing to go home and leaving the hospital
I think it was a Sunday, early Sunday morning. My nurse at the time said, “I’m going to give you a blood transfusion.” It was somebody’s donated blood. He prepared me to get that blood. Then later in the morning, they told me, “Oh no, it was a mistake. Since you were sick, you can’t go home.” I told them, “Okay, I’ll just wait for my doctor.”
My doctor came in, and he knows me. You grow a relationship after you see them all the time. I said, “Listen, you know me, and you know this is killing me being in here. I’m ready to get out. I’m ready to go.” He said, “Okay, I’m going to let you go, but if you have any fever or anything, you need to come back. Please tell me if you feel anything.” I was able to go home on a Sunday. I can’t remember the exact date, but I know it was like December 11 or something; I just know it was a Sunday.
I started decorating my room by myself, and my husband was coming back to pick me up. He was so shocked when he saw my room because I had undone everything. We had so many decorations up. It was beautiful. We had lights, little plants, leaves hanging down. But I was ready to go. I was showered and waiting, and then we left.
Coming home and appreciating everyday life
I got home, and it was the best feeling ever to be home. When you don’t have the option to enjoy the everyday things in life, you really cherish them even more than you already did. It’s the little things, like changing a diaper, cleaning up after them. I was so excited to be able to do it again after three weeks of not doing it. Even laundry. I was like, “I want to do laundry so bad. I want to do all the tasks that you do on the daily.” You miss it when you’re sitting there.
I was so excited to be home. My recovery from that was — I want to say the hardest part was not the nausea itself, but that I had to take my nausea medicine. Otherwise, the rest of the day would not be great. I had to take that for a little bit. The hardest thing for me was keeping my food down if I didn’t take my medicine. Other than that, I went on a nice trip to see my great-grandma. She’s 93 years old. I drove out there on a road trip. I wanted to see her so bad. I told myself, when I get out of the hospital, I want to go see my great-grandma.
Road trip, returning to work, and church community support
We did a little family trip and stayed there for like five days, then came back home. I got straight back to work. I think I returned to work on January 4. I love my job. I do administration for a church, but there’s so much more in that job than just the admin work. It’s wonderful. That was my community. I had so many people for anything. They were there to make dinners when we were in the hospital. They were there to pray for us. They were just always there. That was our community, and I’m so thankful for them. They’ve been with us since the beginning of this journey, and they’re still with us now.
As of today, we’re in the middle of March. I just got my PET scan results back. The only thing that’s there is tissue, which they said stays there for about four to five years. I’m so thankful. Praise God for that. We pretty much just have to go back occasionally. They want me to get PET scans every three to six months, up to two years. That’s pretty much where we’re at, and now we’re here, thankful for another day.
Recognizing early Hodgkin lymphoma symptoms beyond “normal” pregnancy
When I found out I was pregnant in August, I also had fatigue. I was really tired. I would be talking to my husband and would just fall asleep. I was just really tired, always falling asleep. I would even have friends over and would fall asleep while they were there. I swept that under the rug, given that I was pregnant. But now that I look back at it, I know pregnant women are tired, I know moms are tired, but this level of fatigue — no, that was not normal.
If you get anything that you question, I wouldn’t just sweep it under the rug as “you’re pregnant” or “postpartum.” I would immediately go get checked for anything like that. These cancer symptoms are so hidden. They’re hidden in things like night sweats and fatigue. I also had shortness of breath, but you blame all that stuff on pregnancy. “I’m pregnant.” No, I had a mass in my chest. There’s a certain time when you need to listen to your body and take action so it can get figured out. Those were my first symptoms: the fatigue and the shortness of breath. If you’re falling asleep while you’re talking to somebody or while you’re with your friends, that’s not normal tiredness. Something’s wrong, and your body is trying to tell you something’s wrong.
At one point, I think it happened twice, I experienced dizziness and blurred vision. I just took that as, I’m super tired. No, I was not just super tired. That was definitely another symptom I swept under the rug.
Severe itching, misdiagnosed eczema, and advice on urgent care
As far as the itching, I would be doing a normal task like laundry, and I would have to stop and dig my nails into my skin. I would have to dig my nails in so much that my skin would peel off. It wasn’t a normal itchiness either. My husband would see me sometimes and say, “This is not normal. What you’re doing, the way you’re itching, that’s not normal. Something is wrong.” That’s when he encouraged me to get checked, and eventually I went to urgent care.
The itchiness left scars on my legs. I have scars going across my legs that are going to be there for life. It was on the bottom of my feet and my legs. My skin turned darker in the areas where I itched so much. It’s your palms, your wrists, anything — this is not a normal itch. I was itching so hard it didn’t look normal. I looked like a dog who had really bad itching. You know how dogs itch; it’s not like normal. That’s how I felt. It was just not normal itching. It was very uncomfortable.
Looking back, I don’t know why I just accepted that answer, but I did. I went, and they said it was eczema, so I said, “Okay.” I would say, don’t just go to urgent care. I would see your doctor and seek more. That’s what I recommend.
How Hodgkin lymphoma and motherhood changed my perspective
I think the biggest shift I’ve seen is just the importance of life here on earth. Every day we live life, and we truly take it for granted while we’re here, and what we’re meant to do here. We take it for granted in all things. I really didn’t struggle mentally, and I’m so thankful for that because of God and my relationship with Him. I would cry out to Him sometimes when I felt like, “This is a lot, this is a lot.” Then I would remember that He takes that from us. He doesn’t want us to carry that.
I always tell my husband that we haven’t always had this relationship with God. We say, “Could you imagine if this happened when we didn’t?” We couldn’t, and we don’t want to imagine it. It’s there. It’s there for everyone to access. It’s there.
Motherhood has become something more, where I don’t take those things for granted — the blessings that come with motherhood. I have a very supportive husband. Whenever I’m feeling like I’m carrying all this weight, he’s there to help me, support me, and take on things — cook dinner if I just want to hang out with the kids and not cook, little tasks like that.
It’s definitely given me a different view on motherhood and on the gift of carrying your child. I’ve carried three of them, and I didn’t appreciate it the way I did the third time around because of what we were going through. It gives you a better perspective to enjoy all the things that we have, because when it’s your health, all those things flash before your eyes. So just enjoy it.
How The Patient Story helped me
I think I covered pretty much everything. I do want to mention something. When I first got the diagnosis, I came across The Patient Story. Watching everybody’s story — because it was new for me, and I didn’t know what I was going to experience — helped me so much. To hear all these stories of people going through some of the same things that you are going through, I loved to hear them. Not because it seemed good, but because I could pray for those people. I could sympathize with what they were going through and pray for them.
I loved being alongside The Patient Story while I was going through this. That was something really special.
Gratitude for sharing a rare pregnancy and Hodgkin lymphoma story
I’m so honored that I got to share. I enjoyed this so much while I was going through my journey. I thought I would love to share, because it’s not every day that you’re pregnant and going through this. That was one thing I didn’t see. I saw these videos and thought, “Darn, I don’t see pregnancy with this,” but everything else I was able to relate to. It was great to be alongside.
Symptoms: Intense itching (no rash), bruising from scratching, fever, swollen lymph node near the hip, severe fatigue, back pain, pallor Treatments: Chemotherapy (A+AVD), Neulasta
Michelle’s Accidental EGFR+ Non-Small Cell Lung Cancer Diagnosis
EGFR-positive non-small cell lung cancer doesn’t wait for warning signs – and Michelle’s diagnosis arrived without any. A longtime staff member in the University of Cincinnati athletic department, Michelle was busy supporting student‑athletes, traveling, and playing weekly volleyball when a fall down the stairs set off years of confusing pain. What started as jaw, neck, and shoulder issues sent her through rounds of physical therapy and imaging, all without anyone suspecting lung cancer.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
When a neurologist finally ordered MRIs for possible trigeminal neuralgia or multiple sclerosis, Michelle did what many patients do: she refreshed her patient portal constantly and even pasted her radiology reports into an AI tool for translation. A CT and PET scan, followed by a bronchoscopy, revealed the words she never expected to hear in her mid‑30s as a nonsmoker: it was lung cancer, specifically stage 1 non‑small cell lung cancer. A thoracic surgeon recommended surgery to remove her right lower lobe, with the hope that surgery alone would be enough.
Recovery from surgery was intense: five days in the hospital, chest tubes, and the shock of discovering that walking 200 feet with a walker could feel like a marathon. Michelle was also the youngest patient on the floor by decades, an experience that underscored how often lung cancer is still misperceived as an “old person’s” disease. Help from her community poured in around her: her mom, friends, coworkers, and students filled her room, sent gifts, and showed up repeatedly, helping her feel less alone.
Pathology results later upgraded Michelle’s diagnosis to stage 2B after cancer was found in three of 18 lymph nodes, making chemotherapy and a long‑term targeted therapy pill part of the plan due to her EGFR biomarker. At the same time, her team raised critical questions about fertility, leading to an emotionally overwhelming but ultimately successful egg retrieval. 34 eggs were successfully collected, of which 28 were frozen.
Through surgical complications, chemo‑induced nausea, insomnia, and fears of recurrence, Michelle keeps naming both truths at once: this experience “still effing sucks” and she is “hopeful that I am going to kick this thing’s a**.” She leans on her care team, her “pods” of community, and her love of movement, trusting that she’ll get back to volleyball, a full caseload at work, and the future she’s still building.
Watch Michelle’s video and read the edited transcript of her interview. You’ll learn more about her story, including how:
A “healthy” lifestyle and being a nonsmoker do not eliminate the risk of EGFR‑positive lung cancer, especially when concerning symptoms like persistent pain are dismissed or misrouted in the healthcare system.
Biomarker testing that revealed Michelle’s EGFR‑positive lung cancer opened the door to a targeted therapy pill after chemotherapy, highlighting how critical comprehensive testing is in non‑small cell lung cancer today.
Fertility conversations before chemotherapy can be emotionally overwhelming and time‑sensitive; Michelle’s decision to freeze eggs, despite costs and chaos, gave her meaningful hope for a future family.
Community is not “extra”; from coworkers to former teammates and her mom, the consistent support around Michelle transformed long hospital days and difficult recoveries into something more bearable.
A universal truth: it is possible to hold both gratitude and anger at the same time, acknowledging that “things could be worse” while still recognizing that treatment, side effects, and fear of recurrence are profoundly hard.
Michelle’s transformation is not about becoming “perfectly positive,” but about allowing herself to share more openly, claim her story as the “1%,” and still see herself returning to volleyball courts, Opening Day games, and the house she dreams of.
Name: Michelle W.
Age at Diagnosis:
34
Diagnosis:
Non-Small Cell Lung Cancer (NSCLC)
Staging:
Stage 2B
Biomarker:
EGFR exon 19 deletion
Symptoms:
None; discovered by chance during a check-up for persistent head and neck pain
Treatments:
Surgery: lung resection
Chemotherapy (upcoming)
Targeted therapy (upcoming)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I work at the University of Cincinnati in the athletic department. Last year, I hit ten years there. Things were good. I was kind of more focused on whether I was going to stay at UC, what I was going to do, and then traveling a lot. I do a lot of traveling, play a lot of volleyball, and was looking to build a house and do some major life things. And then obviously this came on and shifted everything.
The biggest thing I’ve always told myself, which may seem morbid, is that I lost my dad. It was ten years ago, actually, and a couple of days after my first major surgery. He had such a good outlook on life, even when he was diagnosed with cancer, and then three weeks later, he passed away. I always told myself if something were to happen to me — God forbid I were to get cancer, and here we are — that I wouldn’t just dwell on it, sit in bed, and kind of go, “Woe is me.” I think it was a good way to take on this, but I think it kind of kicked me in the butt in a way when we talk about mental health and taking care of myself, because I don’t want people to feel bad for me.
I do a lot for myself. I’m trying to be independent, and that’s been really hard throughout this whole thing. I really don’t like asking for help or wanting people to help me. I usually am the one to reach out or help other people, so that’s been really hard. This kind of hit me out of nowhere, obviously, as they found it accidentally. I try to stay as positive as possible, even when they were like, “It probably is cancer,” and especially when it lit up on all the scans and things like that. I thought the first surgery was going to be all I needed — no chemo or anything like that. So my world, everything, is on pause. I think pretty much everyone can agree with that; life shifted quickly, especially when I finally felt in a spot where I thought, “I can make some really good changes and make myself really happy and do the things that I’ve dreamed of.” I still can, but I wouldn’t actually enjoy that whole process, like building a house and all that stuff. It’s just not possible to do that with everything going on right now.
So I work in athletics, but I work in the academics unit, actually. I basically — I don’t want to say I do school all day with student-athletes — but essentially I do. I do have a small caseload. I went to Mount St. Joe, which is now Mount St. Joseph University. I played volleyball there. It’s pretty close, about 30 minutes from me. That’s where a lot of my pictures are from; the girls that are in there were my teammates in college, and that was the best experience ever. People knock on D3, blah, blah, blah, small school, but it was hands down the best decision I’ve ever made. My mom is still best friends with some of my teammates’ parents. It was a cool experience. We still play volleyball weekly, so it’s been a really cool thing.
There, I studied sports management, and I wanted to be an athletic director. As I got in a little bit, I realized I quickly did not want to do that because it would be a lot of talking to people and fundraising, and that’s not me. I never thought I would be in the position that I am. I ended up going to Xavier University for my master’s. One of my professors is actually a colleague of mine now; her name is Maggie McKinley.
I went to her, and I was like, “I don’t know what I want to do.” I was coaching volleyball at the time, kind of always wanted to coach, but I knew that I was not going to be able to pay the bills and stuff like that. She was like, “Well, you could be an academic coach.” She hooked me up with somebody who is a coworker of mine now, Carrie, and I ended up getting on as a volunteer and worked my way up. When my dad was sick, actually, I got offered the intern job, and then I think it was like a year after that that I got hired full-time. They made a position for me.
There was one other learning specialist, and there are still only two of us, which is a grind. Our job is interesting. It’s kind of hard to explain because people are like, “You’re a tutor,” and we’re like, “No, not at all.” We do all subjects. We have a small caseload, but it’s intense. I’ve been at UC, like I said, for ten years. Year-round, every single day in the summer, we teach a class to incoming freshmen in men’s basketball, women’s basketball, and football incoming freshmen to get them acclimated. Then I have a small caseload and work with student-athletes all day, every day.
It is a grind, and especially now that we’re in the Big 12. They do a lot of traveling, and it’s just a lot. But I love my student-athletes, and I love who I work for and who I work with. That’s really what’s kept me in it. It’s actually been a blessing through all of this. I don’t want to say that corporate America doesn’t appreciate everybody, but working at a company that has a thousand employees and they don’t really know you is hard. Working where I work has been, I think, life-changing and keeps me from stressing about being off work and things like that. I thought I was going to be back January 5th, and they were like, “Yeah, you’re not going back until February,” and that was after the semester started. Work has just been amazing.
I obviously go to a lot of games. I love supporting student-athletes. My mom is the freaking biggest supporter of them all. The coolest thing is they respect her a lot, and they almost speak to her before they speak to me when they see us. It’s a really cool job. It is a grind, but there are some rewards here and there. There are highs and lows, as always, but it’s a unique job. It’s a cool job.
I am especially close with my mom, with my dad being gone. I have a brother, and it was like mom and son, and then dad and daughter. We were so, so close. My mom and I always hung out, but after that, we kind of did everything together. People invite her. My coworkers are like, “What’s Donna doing? Can she come?” Even people younger than me and my friends always include her. It’s really cool, actually.
The accidental path to my non-small cell lung cancer diagnosis
I think it stemmed from when I fell down the steps. It’s probably been three years now. I kind of messed up this whole area, my shoulder/neck/jaw, and it started — not bleeding — but the pain went up into my jaw and into my head. I don’t get headaches often, but it was giving me migraines. I couldn’t really stare at the computer screen and things like that.
Working in an athletic department, I was able to go down to the first floor and see some of our athletic trainers. They put me in a sling. I won’t go through every single thing because we’d be here for hours, but I saw all the doctors. I got MRIs and X-rays on almost everything here except my brain and, I believe, my neck. That kind of plays a part in the story. Someone did recommend getting that, but I was honestly tapped out after six months. They had put me in physical therapy. That wasn’t helping. Everything — muscle and everything — was getting so intense and causing so much discomfort. I can take a lot of pain, but it was getting really intense.
I finally was sick of everything, which is bad, and I just stopped and dealt with it all. About seven months later, I was out to eat with friends, and all of a sudden, I couldn’t chew or open my jaw. It felt TMJ-ish, like it locked. For about 30 minutes, it wouldn’t open, and then it kind of came out. I went to the dentist; they recommended another physical therapy place. They started looking more at my head and my neck and all of that.
I actually got denied by a neurologist. They said they wouldn’t see me and needed to send me to pain management. I was like, “I’ve been in pain management for two years. Can I please see a doctor?” I didn’t hear back for almost a month. So I went to St. Elizabeth and finally reached out to somebody. I got in with a neurologist there, and she was thinking it could have been trigeminal neuralgia, potential MS, and things like that. She ordered MRIs of my thoracic spine and my brain. That is how this all came about.
I had to wait a month, of course, to get all of those tests. I’m sitting here, and cancer never crossed my mind, to be honest. I was crossing off what she was mentioning. She said cluster headaches, but that didn’t go with all the symptoms I had. A month later, I went and got these exams. Naturally, I’m scrolling through MyChart obsessing over the results. When they came in, I put them into ChatGPT and asked it to translate them for me. I did.
It didn’t really say “lighting up” or anything like that. It just said there was a tumor and they wanted further imaging. I didn’t hear back from my neurologist on MyChart within a day or two, so I reached out to a friend who actually works for a doctor at St. Elizabeth. I don’t usually like reaching out and bothering people like that, but I was so on edge that I needed to. She got me in, and I think I left work that day at 9:45. She was like, “I have a 10:30,” and I was like, “Perfect, I’ll see you.” I texted a student and said, “We’ve got to reschedule.”
I saw the doctor, and he ordered a CT scan. He said the words, “I can see why you’re freaking out, because this could read that you do have cancer,” and I’m instantly spiraling. Being me, I went back to work and waited for the CT scan. I didn’t tell anybody. That was the biggest thing because I was remaining hopeful.
I was able to get a CT scan within a couple of days. My mom went with me. It was early. Those results came in ASAP. I did the same thing, ran them through AI to try to figure out everything I could. Those results recommended that I see a pulmonologist. That was the time things started happening so quickly, but also so slowly at the same time.
By October, mentally, I was not well at all. I was angry and hopeful at the same time, just trying to figure out what was going on. We went to the pulmonologist after I got my PET scan. He did tell me that it lit up, but he didn’t want to say 100% that it was cancer. He was hopeful that it could have been some type of infection we could knock out with medication. Here I am holding on to this hope of, “All right, it’s not cancer.” But I sometimes go to the worst-case scenario.
He wanted to get a biopsy. I saw him on October 14th. I got the bronchoscopy biopsy on the 23rd, and I found out immediately. I must have come to as he walked in, and he said, with my mom sitting there, “It is cancer.” I was heavily medicated, but I was so pissed, for so many reasons. More so, I don’t know, even for me, but that my mom has to go through another hard time. We’ve just lost a lot of people. It was something I never thought I would hear.
He wasn’t able to tell me the aggressiveness or really anything. He said, “You probably will have to get some of your lung removed. You’ll never be able to run a marathon again.” I was like, “Eff marathons,” because I don’t run. I do a lot of working out, I play a lot of volleyball, but I don’t run. I had no symptoms. This came out of the blue from jaw pain and things like that, so it was a surprise.
I went home, and he recommended that I see a thoracic surgeon at the cancer center at St. Elizabeth. We have a good cancer center in Columbus — The James — but I didn’t really explore a lot of options. I just wanted to make decisions. When my dad was sick, he was at St. Elizabeth, but they didn’t have what the cancer center is now. I’d heard a lot of really great things about it and the doctors there. So I went to see Dr. Williams, and she confirmed that it was stage 1 lung cancer. Even though I knew it was still upsetting, and I started getting upset, she was trying to be hopeful: “We’re going to get this. We caught it early.” I was so thankful. I think I was writing it off a bit, like, we have it early, we’re going to get it, surgery is going to be all I need.
My first lung surgery and hospital experience
She told me the plan for my non-small cell lung cancer: she wanted to go in and take my right lower lobe. She had seen a little spot on my middle lobe. Thankfully, when she went in to do the surgery, it was nothing, but she was able to wedge that off. She said that surgery would then determine the next steps. That was kind of like, “What do you mean?” I was, again, in my mind just thinking, let’s get this out, and we are good. Golden. I’m back to work. I’m back to life.
She said if it spread, depending on what it was, I might have to get chemo or other treatments. That was mid‑November, and that day we scheduled surgery. Surgery was scheduled for December 1st. I didn’t want to do it that week because that was the tenth anniversary of my dad’s passing in the same hospital. Mentally, I didn’t think I could do this. I know I’m strong, but that is a lot. For insurance purposes, we couldn’t push it back, so we kept it on the first, which all worked out the way it should have.
I had surgery on December 1st, and that was a wild experience. Traumatic is probably not the right word, but life-changing. Even then, I was thinking my life wouldn’t change as much as it has. It’s still really great — my life is great — but life has changed. She took out my right lower lobe. Of course, we had to wait for all the results and fun things.
Being in the hospital for five days with tubes, some of my pictures and videos are from the next morning after surgery. My nurse’s name was Michelle, too, and she walked in at 4:45 a.m. and said, “All right, we’re going for a walk,” and I’m like, “What?” Down the hallway I went. Never in my life did I think walking 200 feet with a walker would be hard. I did well, but it was a lot, and I was in a lot of pain that week. I do not like medication, but the pain meds were great. They had to give me a shot in my stomach. That was not fun because the nurses kept telling me, “Oh, you’re so skinny,” and commenting on how small I was. That was a terrible experience, honestly.
People showed up for me. My mom was there the day of the surgery, obviously, but it was an all‑day thing. It took, I think, 6 to 8 hours or something like that. My best friends sat there literally all day long. My mom decided it was probably best that day for them not to see me because I was screaming our favorite word, “eff.” I asked the nurses the next day, “Was I mean?” I’ve never been knocked out that long or that hard, and I don’t remember that surgery day at all. They were like, “No, you just kept screaming ‘Eff,” and we just didn’t know what to do.” I was like, “I’m so sorry, I’m so sorry.” At least I wasn’t mean. My friends were there, and my mom didn’t want them to see me like that, so I appreciate that.
I was the youngest person on the floor. Through this whole process, every doctor has asked why I’m there: “What are you doing here?” I’m not a smoker. I’ve had no side effects at all. I’m healthy for the most part, I work out, things like that. Every time the doctors were asking me, I was like, “I’m trying to find out why I’m here.” I was probably the youngest on the floor by 30 or 40 years, and some of the people weren’t getting visitors, which made me sad. But I had people — it was like a revolving door. My room was full. When we were leaving the hospital, it took six trips because we had so much stuff. That’s been the best part — not the stuff, though that is nice — but the people. They’re not just showing up here and there; it’s consistent. Some of my friends, whether I’m asking or not, are still coming, checking on me, showing up at my house, texting my mom. The community support has been insane. I didn’t realize how many different pods I’m involved in, so it’s been really, really cool to see that all show up.
I was in the hospital for five days for that treatment. I have some battle wounds and scars. The tubes were painful. I don’t understand why they are so painful. They said it was because I didn’t have a bunch of room and I’m small, but I was like, “I could do without that.”
Processing a non-small cell lung cancer diagnosis as a young, active nonsmoker
It’s been really hard. It’s just been hard because I will say, no matter what, I never thought in my life that I would ever get non-small cell lung cancer, even with my dad having it. I never really thought about the genetic piece, which they said has nothing to do with this. When I found out, I was trying to stay so, so hopeful. Then I also was like, how do you tell people that you have cancer?
After all of this, I just went right back to work, going on with my normal life, usually just telling my mom what was going on and going back to work. Then I was a mess one of the days. I was in the stairwell, and one of my coworkers walked in on me. That’s how I was like, “Hey, yeah, so this is awkward,” but one of my other coworkers was in my office, and it was weird to say it again. I don’t know why it’s so weird for me and why I struggle, but I just tried to remain hopeful even through the really bad days in October.
The best thing was that in October, I had a bunch of random things planned. We had a girls’ trip planned. My mom and I had dinner planned and went and saw The Sound of Music. I love The Sound of Music. We always used to watch it growing up. We went and saw a play, and it was always an option, like, we didn’t have to go, but we did go, and I’m so glad that we went. I had a couple of different things planned, as I said, a girls’ trip. That one was hard, though, because not everybody on the trip knew. It was before my surgery and before the biopsy. I didn’t want to tell people and then have to “retract” and say, “Oh, just kidding, it’s not cancer,” which would have been great. Again, it’s just awkward. “How do you tell people that you have cancer?”
I honestly did not tell really anybody about it until maybe the end of October or November. I don’t want to say I regret it; that’s not the word. I probably could have handled it a lot differently, but it was such a personal thing for me. I don’t want people to feel bad for me. I didn’t know any answers to any questions. I knew I was getting surgery and that’s about it. People were like, “Are you going to get chemo?” I honestly was like, “I don’t know,” but in my mind, I had it that surgery was it and that’s all I was going to need.
I’m still staying positive. Some days it’s a really good thing, but I’m still not fully feeling my feelings all the time. When I get sad, I don’t want to be sad. I want to be happy. So sometimes I’m avoiding those feelings. That’s why I loved going through the pictures for this. Now I’m really happy that I’m doing this, so thank you. I just struggle because I want to be strong. I don’t want people to feel bad for me. I don’t like complaining. We’re all tired, we all have crap going on, things like that. But then I think about everything I’ve had to do since that December 1st surgery. Holy mackerel. It’s a different life. If you haven’t had it or gone through it, you really don’t know, even as a caregiver. The pain, the nausea, the medications, the appointments, trying to prioritize everything, the work‑life balance — things like that.
I didn’t share much, but I started sharing on social media, and I did feel like I had a weight lifted off my chest. It was a really cool thing. I like writing, so I’ve been trying to share a little bit more. I don’t know why I struggle so much with sharing. Some days I’m like, “Yeah, let me share,” and other days I’m like, “No.” Things like this are making me share a little bit more because everybody’s journey is different, but also somewhat similar in different ways. You meet new people, which I think is cool, especially when we know what we’re all going through. That’s been — I don’t want to say a nice thing — but it’s a feel‑good thing to have somebody who knows that.
I am missing the gym, though. That’s my big me‑time, me‑space. With all the surgeries and then starting chemo, it’s been hard, so I’m trying to get back moving and things like that.
What happened after my surgery
So on December 1st, I had my surgery. Next, I had my follow‑up mid‑December with the oncologist, where some of the results were back. The non-small cell lung cancer had spread to three of the 18 lymph nodes that she had taken, so it was upgraded to stage 2B. Again, she was trying to stay super hopeful, but that’s when she said, “You will need further treatment from here.” That was a dagger to the heart. We left the cancer center that day, and luckily, there was a cancellation for an oncologist, and we were able to get in that day. We met with an oncologist. What a blur. She said that I would need chemotherapy. I was adamant that I was not going to get it because I am not a fan of medication.
She said, “We can stop talking,” and I was like, “No, keep going, say what you’ve got to say — inform me of everything.” She did not have the genetic results or any other results. When I met with her in January, she would know more about what type and what treatment plan I would need.
When I talked to my surgeon at the follow‑up, she recommended a port. I was like, “Wow, I have good veins, blah, blah, blah.” I’m so glad I got the port in some ways. She said, “We will talk about it now so you don’t have to come back, and you can just call and get it placed.” When I was at my oncologist appointment, thank God my mom was there because she brought up fertility. They referred me to the Institute of Reproductive Health. We were going out of town on a mom‑and‑daughter trip to the Hallmark experience for my mom’s birthday. I have to say that because my mom’s birthday is Christmas.
We did that, but I had a consultation with the reproductive health doctor the day after Christmas at 10:30 in the morning. I know nothing, and I will say I could have done some research, but that was the most overwhelming experience of my life. He wanted me to make a decision about what I wanted to do at that moment. I didn’t make a decision. I was sobbing my eyes out. He gave me the weekend. That Monday, I decided I was just going to freeze my eggs.
Everything got super chaotic because it’s like three different parties working together in a building, and they communicate through text message for everything. I could barely keep my life in order. I didn’t hop on that process ASAP because I was also getting my port placed. I think that was January 8th.
Port placement complication and egg retrieval
I got my port placed on January 8th. It was supposed to be super easy. My lung collapsed during the procedure because there was a hole poked in my lung. That was a great time. While I was in recovery, they realized that my other lung was collapsing. It was not great. My surgeon came out and told me that. I’m in a lot better spot now, thank God, because I’m not going to cry right now, but I will say that in that moment, I honestly thought I was going to die. Whenever I hear “lungs collapsing,” I thought, what do you mean? I’m sitting in a recovery room, like, shouldn’t I be somewhere else?
She basically said she was going to have to put a tube on the other side and keep me overnight. She turned, and an anesthesiologist was walking behind, and she asked, “How long are you here?” The anesthesiologist went and did a surgery, came to where I was, put a tube in, and then I stayed overnight. It was terrible because I was violently, violently ill. After that surgery, I felt like I took a step back, and then I had to deal with all the fertility appointments. Of course, as everybody knows, it’s time sensitive.
It wasn’t the right timing yet, so I had to wait until February. Within, I think, 13 days, I had like 27 injections. We did the trigger shot and the egg retrieval. I was so, so blessed that they were able to get 34 eggs and freeze 28 of them. I know. I’m not going to complain about that. The money is wild. It was never in my cards, to be honest. I don’t have anything on insurance that covers it. My future will never have a price on it, but I’m so thankful that I did it and that my mom thought about it, because that never really crossed my mind.
We did that around February 10th. They didn’t want me to start chemo until my next cycle came, and they thought everything was okay. During that time, with hormones and everything, my mental health was crap. I was just not myself. I said, “I need a few days before I start chemo.” I was going to call my oncologist.
The joke was on me because they called me and said, “We have to start chemo next Thursday.” I said, “Can we push it back, please, just a couple of days? I want to try to feel myself.” I love my oncologist and my nurse so much. They are amazing. But my nurse said, “Dr. Darnell says we need to start.” I didn’t ask why it’s time sensitive; I don’t want to know.
Starting chemotherapy and the side effects
That first round of chemo, on the 5th, put me down bad — really bad. I will take pain over any nausea any day of my life. The hardest part is not sleeping. People are like, “Yeah, I don’t sleep either,” and I’m like, “No, no, no, you don’t get it.” You get it — the sleeping and not sleeping, getting tired. It’s just hard.
I went back to work, so finding a balance with that is extremely hard. I don’t have a full caseload. My coworker is taking on a ton of students, and that makes me feel so guilty. I know she doesn’t blame me; it’s not my fault. But it’s really hard. I don’t like being away from work, even though I’ve worked my butt off for the ten years that I’ve been there — and I still work my butt off — but it’s hard.
I’m supposed to get four rounds of chemo. After that, I will do a targeted pill for, research said, three years, so every day for three years.
EGFR biomarker and targeted therapy, plus integrative care
The question I asked was because I went through a lot of guilt: “What did I do to myself?” I thought I did this to myself. I want to give a shout‑out to my chiropractor, who is a chiropractor but also in the holistic medicine realm. He’s kind of a doctor in a sense. He actually had terminal brain cancer when he was young, and he beat it. He has been helping me also. My oncologist is totally open to it.
My oncologist said that my non-small cell lung cancer is not genetic. I asked, “Why? What happened?” She said, “It’s just a cell that wanted to mutate.” I kind of took that. My chiropractor is like, “There’s a deeper meaning, and we are going to find out.” We’re trying all different things to combat this, along with the chemo, and making different changes.
I did ask if I needed genetic testing and things like that. She seems pretty hopeful. I thought I was going to have to get immunotherapy, but then she said I would just get this targeted pill. I guess she was saying that it is — I don’t want to say a better thing — but I’m hoping that it’s helpful. I did ask if I would have to take the pill even if the cancer wasn’t there, and she said research says we just need to keep taking it. I’m like, “Okay.”
The targeted therapy is because of my EGFR biomarker. I didn’t ask a ton of other questions, except whether it was genetic and if I needed genetic testing.
How I look at the future, fear of recurrence, and holding on to hope
An emotion that hit me recently is the thought that it can always come back. I don’t know why — for some reason, I’m like, “Oh no, it’s gone, it’s going to be gone forever after one chemo treatment.” Some days, my thoughts are super hopeful and kind of out of this world. That’s going to be something I really have to work on: the fear of it coming back. That’s scary, especially when there are uncontrollable things, no matter what you try or what everybody tries.
That’s scary, especially with how women’s bodies are. I’m not saying men’s bodies aren’t affected, but I didn’t know that chemo could throw me into pre‑menopause at 35 or mess with my fertility. Thank God that I went through that process, because I can think about a family one day. No matter if it messes my insides up, I can still have a family, because that is something that I want. I love kids, so that is something I want.
I am hopeful that I am going to kick this non-small cell lung cancer’s a**. “Eff” is my favorite word. I have “Eff off” earrings, “Eff off” things; my friends get me funny things. Someone told me, “The way you’re handling it, laughing through all the challenges after you’re admitted to the hospital after a port placement — you have to do that or else you’re going to completely lose yourself.” I’m not saying it’s easy by any means, and some people may be like, “She’s having a great time, what the…” No, I’m not, but you have to. I try to make light of every situation. Usually in the doctor’s offices, I’m trying to laugh rather than cry.
My support squad is so crucial. My team of doctors is so crucial. That’s why I’m able to think of great things in the future. All the things we talked about — where my life was last year, doing girls’ trips, trips with everybody, family things, sports games, wanting to build a house, doing other things like that — that’s going to come, and I know it’s going to come. Don’t let things take the joy. The joy has to still be there. That’s what I’m trying to do: still live, still look into the future. My friends are like, “Where are we going when all this is over? We need a trip, what are we doing?” I’m like, “Okay.” It’s going to get back. My friends have not really let me lose sight of the fact that I’m going to be back playing volleyball here soon. I may not be diving and doing my normal crazy things, but I’m going to be back on the court with them and back at work with a caseload and things like that, back to normalcy.
Seriously, that’s what adds a lot to it — the extra appointments — because they’re worth it, but all of the other things are just a lot. Some people are like, “Don’t let it become your life,” and as you know, we don’t want it to, but it’s kind of hard when you’re supposed to be signing for your house, and you’re at the cancer center. We have Opening Day next week, and in Cincinnati, it is like Christmas. I don’t usually treat it like that, but I’d like to go out and enjoy. I’ll be watching. They’re like, “You can watch it from the small TV,” and I’m like, “Thanks, getting chemo, can’t wait — just kidding.” I always think, things really could be worse, but I need to remember it still effing sucks sometimes. We’re here. I just keep on keeping on, one day at a time.
Being the 1% and owning my story
One of my friends said, “Just remember, you’ve always been the 1%.” Every time, they’re like, “You are the 1% of the 1%.” My doctor said I’m 1 in 100 of people whose lungs collapse with the port placement and things like that. I don’t want to — but that’s kind of how I laugh — I’m like, “Of course this would happen to me.” Stuff like that. “Every time they’re like, ‘You are the 1% of the 1%.”
Living Fully With Stage 4 Signet Ring Cell Stomach Cancer: Kris’ Story of Movement, Faith, and Community
Stage 4 signet ring cell stomach cancer turned Kris’ world upside down, despite a life built on movement, eating right, and saying no to alcohol and cigarettes. What began as quiet Sunday family dinners and triathlon training became a confusing string of symptoms: vomiting after big meals, intense chest and back pain when swallowing, and a feeling that food was getting stuck. An endoscopy revealed an ulcer and a tumor at the junction of her esophagus and stomach, followed by the call no one wants to get: signet ring cell carcinoma, a rare and aggressive form of stomach cancer.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
June 2025 became a blur of scopes, washes, imaging, and procedures. Doctors discovered that the stomach cancer wasn’t just in the visible tumor but also in her stomach lining and peritoneal lining. This discovery shifted the plan from a partial gastrectomy after four rounds of one kind of chemotherapy to ten rounds of more aggressive chemo and immunotherapy. When a second wash still showed loose cancer cells, surgery was taken off the table locally: news that crushed Kris, especially after hoping and praying for a clear path to tumor removal. She and her daughter immediately turned to research, ultimately connecting with a team at MD Anderson Cancer Center for additional opinions and options.
At MD Anderson, Kris learned about four possible approaches to treat her signet ring cell carcinoma, including a new systemic chemo regimen, intraperitoneal chemo through a stomach port combined with total gastrectomy, HIPEC (hyperthermic intraperitoneal chemotherapy, or heated chemo in the abdomen), and a clinical trial in New York. She feels both hopeful and overwhelmed: she wants the most effective plan against this cancer, but she is also weighing how much time she is willing to spend far from home and loved ones.
Day to day, Kris lives in tight two‑week chemo cycles: long infusion days, 46-hour “chemo purse” infusions at home, and lingering nausea, neuropathy, and exhaustion. Yet her personal plan is rooted in mindset, movement, nourishment, faith, and encouragement. She walks her wooded paths in short loops, relies on prayer walks, leans into help from family, colleagues, former students, and even strangers, and shares practical chemo tips, like cinnamon toothpaste and nipple cream for mouth sores, on TikTok. Kris knows she may never hear the word “cured,” but she holds on fiercely to the hope of more time: to see her daughter marry, to welcome her grandchild, and to one day care for her own grandchildren.
Watch Kris’ video and read through the edited transcript of her interview. You’ll find out more about her story.
Listening to your body matters: Kris took vomiting after large meals and painful swallowing seriously, pushing for an endoscopy when symptoms did not improve.
Cancer does not follow “rules”: even with a long-term healthy lifestyle, Kris developed an aggressive signet ring cell stomach cancer, challenging assumptions about who “looks” like a cancer patient.
Options can be both hopeful and overwhelming: multiple treatment paths, clinical trials, and potential surgeries offer possibilities, but also force difficult choices about travel, risk, and time away from home.
A universal truth: every patient deserves to be their own advocate: asking questions, seeking second opinions, and insisting on explanations in plain language.
Transformation through community: once Kris opened up about her diagnosis, she went from a small private circle to feeling “an entire world” behind her, shifting from quiet processing to public encouragement, TikTok tips, and the “Moochi Strong” community.
Name: Kris M.
Age at Diagnosis:
55
Diagnosis:
Stomach Cancer (Signet Cell Ring Carcinoma)
Staging:
Stage 4
Symptoms:
Trouble swallowing and pain when more food was eaten than usual
Significant weight loss
Treatments:
Chemotherapy
Immunotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I have stage 4 stomach cancer. It is a signet ring cell carcinoma. I am 56.
My healthy lifestyle before the stomach cancer diagnosis
Before cancer, I was a very healthy person. I walk every single day. I have many dogs, and I walk them. I was in triathlons. I loved to swim. I love to bike, not run so much, but I do it with the triathlon piece. I love to kayak. I just love to be outdoors all the time. And I actually did not eat meat for 25 plus years. I did not eat pork or beef. I only ate chicken. I eat mostly salads. I don’t drink alcohol. I don’t smoke cigarettes. I typically am somebody who leads a healthy lifestyle, and I eat a lot of salads and fruit and vegetables, that kind of thing.
So when I was diagnosed with stomach cancer, I was really, really surprised and thought that usually that type of cancer would be associated with a poor lifestyle or poor health, someone who doesn’t take care of themselves very well.
First stomach cancer symptoms and vomiting after family dinners
I first realized that something was wrong on, and I’ll never forget this, this particular Sunday. Every Sunday we have a large dinner with our family. Everybody comes to my house, and I have my children with their significant others, my mother, and sometimes my brother and some other friends. I typically am the type of person who just nibbles on things throughout the day. I eat five or six small meals throughout the day.
On Sundays when we have a big meal, I like to eat a little bit of everything that’s on the meal. So the first Sunday, I started to eat my typical food, and I ran in and vomited. I work in a school district, so I thought, “Well, the flu has been going around. Kids might have given me some kind of bug,” and I didn’t think much of it. Then throughout the week, I just kind of had a queasy stomach, and I thought, “Oh, I’m just going to take it easy and keep nibbling my little things.”
During the week, I was okay. Then on Sunday it happened again. To make a very long story short, it happened three Sundays in a row. Then I thought, “Maybe it’s stress. I’m under a lot of stress. It’s the end of the school year.” So I just continued to think that it was that, that it was just stress and some bugs going around.
Then it was not that it was difficult for me to swallow, but when I swallowed, it hurt really bad right here in my chest and in my back, and it felt like the food was just stuck there. I was like, “There is something really, really wrong.” So I called a local doctor and thought that they would do a scope. My son said, “Oh, you just have GERD, Mom. You probably just have GERD. You’ll be okay.”
So I went in for the scope, and when they did the scope, they came back out of surgery and said to me, “We saw an ulcer, and that might have been causing some of your issues, but also right underneath where the ulcer is, there was a tumor, and the tumor was pressing on that ulcer. It’s right at the junction of the end of your esophagus and the beginning of your stomach, right there.”
I could just tell from the nurses and the doctors that it was not good. He did not say cancer at that time, but I knew that he was going to tell me that it was cancer. So the very next day I was with a friend in the car, and I got a call from the doctor, and he said, “I am sorry to tell you this, but you have signet ring cell carcinoma, and we need to get you in for several appointments and get things going because it’s a pretty aggressive cancer, and we need to get you going on some treatment.”
So that’s how it all started, just with vomiting and then that pain. It wasn’t that I couldn’t swallow. It was just that it felt like it was stuck right here, and it hurt really, really bad.
Endoscopy, biopsy, and getting a signet ring cell carcinoma diagnosis
When they went in, they took a biopsy, and they sent that away. The very next day, I got a call. It was late in the evening, and the doctor said, “This is very, very serious. You need to come to my office, and then we’re going to get you set up with a whirlwind of appointments.” After that, it was crazy. That was the very beginning of June, and I have to tell you, every single day in the month of June of 2025, I had at least one appointment, if not two or three.
They went in and did another scope. They did a look‑see in my stomach and other areas. They were checking that out. They did a wash where they put fluid in my stomach, slosh it around a little bit, pull it out, and then they look to see if there’s cancer in your stomach. There were just so many appointments with so many different doctors. They had to obviously put my port in. Unfortunately, when they put my port in, they nicked my lung, and my lung collapsed, so then that was another procedure.
Something that I decided to do when I was first diagnosed — I really struggled with it — because I thought in my lifetime I might hear the word “breast cancer” because my mother and my grandmother both had breast cancer. Or I thought that I might hear “skin cancer” because I love the sun, and I taught swimming lessons for years, and I was a lifeguard. I was out in the sun. But when he said “stomach cancer,” it really, really threw me for a loop because, like I said, I’ve lived a healthy lifestyle, and we didn’t have stomach cancer in our family. It was just something that I did not expect. So it was quite a punch to me.
In June, as I went through all of these appointments, it was not something that I wanted to share with people, yet it was something that I needed to process myself. I obviously shared with my immediate family: my mother, my brother, my son, my daughter, my husband, and my best friend. But while I was going through all these appointments, no one else knew. So I think for me, if I had to do it over again, I might share that just so I had some more support at that time, because once I did tell everyone in August, after I processed it and thought about it myself and had kind of a plan in place, then I received so much support that I probably needed in June. I just wasn’t ready to share that.
Early stomach cancer symptoms mistaken for stress and GERD
I wasn’t treating the symptoms with anything. It really only happened when I ate what I would consider a big meal. For most people, it’s probably not a big meal, but when I would eat a large amount of food, that’s when it seemed to happen.
I was like, maybe it’s stress. I was thinking a lot of things might contribute to that. I wasn’t really thinking that it was cancer. My son said, “It might be GERD because I was struggling with that. That’s what mine was like, Mom.” I thought, okay, maybe I just have an ulcer or something from some of the stress that’s happening. But unfortunately, that was not the case.
Hearing “You have stomach cancer” while driving to a funeral
The only friend who knew in June found out because she happened to be driving the car. Unfortunately, we were going to another friend’s house; it was her husband’s funeral. When the doctor said “cancer,” I was just like, “What?” And he said, “Yes, it’s cancer.” He explained where it was. Then he said, “It’s a rare type of cancer. It’s very aggressive. It’s called signet ring cell carcinoma.”
In my mind, I’m thinking, where is this coming from? What am I going to do? What’s going to happen to my kids? He’s saying it’s very aggressive. I was anxious to get home and do a little research, but then you know the flaws of that, too, because you don’t want to just read what you find on the internet. There’s a lot of misinformation out there as well.
I’m a planner, and I like to take things and tackle them, and that’s part of my job. So when he said “cancer,” and I came home, and I shared that with my family — because, as I said, I was in the car with my friend — when I came home and shared that with my family, then I was like, “Okay, I have to hit the ground running.” I need to set this up and this up and this up. I started making appointments and started trying to figure out what our next steps were going to be and what we needed to do to start treatment, because my immediate thought was, “I need to start treatment right away.” If he says this is super aggressive, and then I did a little peek‑see on the internet and you find out it is, I’m like, okay, I need to be treated ASAP, and I need to get going and see how we can get things started quickly.
Scopes, washes, and learning that the stomach cancer was in my stomach and peritoneal lining
The first thing that they did was to do another scope just to see. They took me in and did another scope at a different hospital with a different physician. This physician, this surgeon, works closely with the surgeon at the Cleveland Clinic main campus. They sent me to Hillcrest.
I had the scope. He looked at everything, and he said, “I think it is just isolated to the juncture right at the esophagus and stomach. The ulcer is there, but the tumor is also there, and we think that that is the case.”
After that, they put in the port because they were going to start the FOLFOX treatment. They originally said, “We’re going to do four treatments, and then what we’re going to do is a partial removal of your stomach.” At that point, that was what I thought the plan was. They said, “You’re going to have this aggressive chemo. You know you’re going to lose your hair. We’re going to take part of your stomach, and then we’ll have to just see after that.”
Then they decided that they probably should do a wash just to see if there was cancer anywhere else. When they did the wash, as I said before, they put little holes in my stomach, put this fluid in my stomach, slosh it around a little bit, pull it out, and look to see if there are cancer cells anywhere else. Unfortunately, the cancer cells were not just isolated to that tumor that was in my esophagus and the beginning of my stomach. The cancer was in my stomach lining, and they also found it in the peritoneal lining.
At that point, I had not had any chemo. I had just had the prep with the pump to get ready for chemo because they were thinking the four doses of FOLFOX. Then they said, “Okay, we’re going to put you on a different chemo treatment. We’re going to give you ten treatments with the new chemo, and then after the ten treatments, we’ll do a wash again.” So from June until mid‑December, I had ten treatments. It was immunotherapy and chemotherapy, and it was pretty aggressive.
I had quite a few side effects. I had a lot of numbness and tingling. I had cold sensitivity. I did not lose my hair, but it thinned. I had really, really thick hair, and my hair thinned quite a bit. In December I went in and had a second wash. The doctor called me a couple of days later after the wash and said, “Unfortunately, there are still loose cancer cells in there.” This was right before Christmas. He said, “Surgery for us is really off the table at this point.”
So my daughter and I started thinking about maybe there are clinical trials out there, maybe someone is willing to do some kind of surgery when you still have some loose cells in there. We started doing some research. This was December 16th. We started making some calls to different facilities. A day later, I had filled out an application for MD Anderson in Houston, Texas, and I got a call from them, and we started getting the ball rolling for me to go to MD Anderson. So I went there in January.
Devastating news: Stomach cancer surgery was taken off the table
When I received the call from the surgeon, and he told me, “I’m really, really sorry. Surgery is off the table,” I was crushed. I was absolutely crushed. It was right before Christmas, and I was crushed because when I was first diagnosed, I was told that I was only going to have four treatments, and then I was going to have the partial removal of the stomach. I was looking forward to that.
Then, when they did that first wash in June, they said, “Oh no. Because you have it in other places, we’re going to have to do a different kind of treatment, and then we’ll see.” Actually, the night before my second wash in December, I had a group of people who follow me, and we had a prayer Zoom meeting. I had all of these people on there praying for me and saying wonderful things, and I was so sure that he was going to call me and say that there was no cancer anywhere else, and that we could do the removal of the tumor and the partial stomach.
I was certain of that. So when he called and said, “We can’t do that,” I was absolutely devastated. I think I was angry — not angry at the doctors, just angry that that was the case, that that had happened, and it wasn’t what I had expected. That is why that day my daughter was here, and my mother was here. We were actually baking Christmas cookies when he called. We got the computer out and started looking. We said, “Let’s see if there’s someone else somewhere, somewhere in the world, that would consider doing some kind of surgery with my situation, where there were still some cancer cells in there.”
MD Anderson consultation: New scans, biomarkers, and four treatment options
In December, I had to take a few weeks’ break before the wash, and then I needed a couple of weeks to heal before they would allow me to start chemo again. At the end of December, I started chemo, but they had me on maintenance chemo. I was on that for December and then January. Towards the end of January, I went to Houston, Texas, to MD Anderson.
At that time, I met with an oncology team, an entire team of people. We talked about my cancer and where I was currently. Then they ordered several scans and several blood tests. They did the biomarkers. They ordered all of that while I was there. I spent about a week in Houston and had all of those tests done.
They noticed with the CT scan that the maintenance was not working because there was still a lot of fluid in the peritoneal lining, and they also noticed that there was some stranding. They suggested four different options for me. I met with a surgeon as well at MD Anderson.
Option one was a new line of chemo, where they were going to add another aggressive kind of chemo to try to kick this cancer out of me. That was option one: a new line of chemo.
Option two was the procedure where they would put a port in my stomach. They would put something in my stomach. They would give me chemo directly in the stomach port. They would do three treatments of that, so I would have to go down every two weeks to Texas, and they would do three treatments of chemo directly into my stomach. Then they would do a removal of the stomach. After the removal of the stomach, I’d have a little rest period, obviously, because you can’t just go into chemo right after having your whole stomach removed. Then I would go back and have three more treatments of chemo directly into my stomach, and then they would see with scans where we stood with the cancer. So that’s option number two.
Option number three is a heated chemo option called HIPEC. They were going to do a surgery, looking to see where that tumor is themselves, because they have not done any surgery at MD Anderson. He said he would go in as a surgeon, look at that, look at my peritoneal lining, and then they would put some hot chemo in my stomach. If I’m understanding it correctly, they kind of slosh you around up and down for a couple of hours in the operating room, and then they close you back up. They’d send me home after a few days. Then I would go back and have the complete removal of my stomach.
I didn’t know that people can live without their stomachs, but they can, and I found that out from your platform. They would have me go in, they would take my stomach out, they would do the hot chemo again, the HIPEC again, and then hopefully we would see less cancer or no cancer. So that’s option three.
Option four is at a hospital in New York, and that is a random clinical trial. What I mean by “random clinical trial” is that half of the people would get the chemo through their chest port, if they have a chest port, and half of the people would get it through their stomach, and you’re just chosen at random. You’d have the three treatments, you’d have the removal of your stomach, and then you’d have three more treatments.
That’s where I’m at right now. I’m going back down to MD Anderson to speak with them in April, so I will know a little bit more in April, but that’s where I’m standing right now. They did start a new line of chemo for me. I’m on treatment number 16. This is my second treatment with this kind of chemo. I’m having that right now. They want to do at least four treatments of that chemo to see if it’s working before I go down to Texas and have all my scans. That’s why I’m waiting until April to go to Texas to have my scans, because they want to give that chemo a chance and an opportunity to start reducing the amount of cancer cells that we see. That’s our hope.
Weighing these four treatment options for advanced stomach cancer
So I guess having four options, I feel hopeful. When I got the call on December 16th, I didn’t know if there were any more options other than just keeping on doing chemo every two weeks. From my original diagnosis, my goal was to have surgery. I know that sounds crazy to some people — why would you want to go through a surgery like that to have your entire stomach removed? But that has been my hope from the beginning: to get as much of the cancer out as we can and, if it’s possible, to do some type of surgery.
I am hopeful because there are other options, but it’s also confusing. I am not in the medical field; I’m in education, but I have done a lot of research. I do need to clarify that option two, where they would do chemo through my stomach, is a clinical trial. I don’t know of other hospitals that are doing it, but MD Anderson is doing it. It’s in Texas; I live in Ohio. So we’re talking about, if that’s the case, three trips down before the removal of the stomach to have chemo every two weeks. I’d lie down and have that, then I’d have the removal of my stomach, where I’d probably be down in Texas for at least a month, and then three more treatments after.
To me, it’s a little overwhelming just because it’s a lot of travel. It’s a lot of weight. It’s a lot of time away from my home. To be completely honest, my family hates it when I say this, but if you don’t know how much time you have, how much time do you want to spend away from loved ones? I know that somebody can go there with me, but I’m not going to have everyone there with me. That part of it weighs heavily on my mind. It’s just because there are so many options, and I’m not sure what the best option is. They always have the end note of, “Whatever the patient decides.” They may give you a little bit of an opinion, but they’re not going to sway you one way or the other.
I am very fortunate. I have another physician working at another major hospital locally, and I have met with him as well. He said, “I think you want to go with whatever they can throw at the cancer. You want to go with it.” I’m really looking at, hopefully, if I’m a candidate, option two, where they would do the chemo in my stomach and I’d have all those multiple treatments, or option three. I really want to go down to Texas again and have a conversation with the surgeon, because my original meeting with the surgeon was just by phone. I really want to meet him in person and talk about the data that they have on the ones that they have done, the clinical trials, and such.
So option two is a clinical trial, and option four, the randomized trial, is a clinical trial. Option three, with the chemo, the HIPEC, is something that they have already done as a clinical trial, and there are other places that are doing it now, so it’s not considered a clinical trial.
The physical side effects of stomach cancer and chemotherapy
So physically, I think the hardest thing was when I was finally diagnosed. I didn’t see it in myself, but other people started noticing. I had gone from about 145 pounds to about 117, 118. So I was very, very thin. It was very difficult for me, like I said, to eat. It hurt when I ate something. Once I started treatment in late June, nothing tasted right. It tasted terrible.
Physically, what was hard for me was just to see myself that thin. People see me all the time, and they say, “Kris, you look great,” but I don’t look or feel like I did before because I was a very active person. I did triathlons. So I think physically, my lack of strength is something that weighs heavily on me. I am a person who really pushes herself quite a bit. Every day, I do things physically, like I walk my dogs. I make myself do that.
I have property here where I live, and we have several acres and paths through the acres, paths through the woods. If I can only walk the path once, that takes me maybe ten minutes, and then I come in, and I have to rest. Then I walk it once, and then I set a timer, and in an hour I go walk it again. I may not be able to walk the hour and a half, two hours that I used to take, the long, nice walks, and the hiking, but I’m still trying to do that. Physically, I’m still trying to push myself. The nausea really is hard, that you’re nauseous all the time after the chemo treatments.
What my chemotherapy days are really like: Alone in the infusion room
I think one thing is — I don’t know about other people and where they’re at — but where I am getting chemotherapy, since COVID, people are not allowed to come in there with you. So you’re in there by yourself. I typically see the doctor, and my husband or my daughter might be with me, my son might be with me. I’m with the doctor, and then they’re like, “Okay, now you’re going to treatment. You go that way,” and your family goes the other way. So you’re in there by yourself, and you’re in your own thoughts as you’re getting this poison put in your body.
I think that’s something that’s really, really hard, that you’re in there and you’re in your own thoughts. I asked myself, “What can I do to make it a little bit better for me?” I pack a chemo bag the night before, and it’s like I’m going on a fun trip, but I’m not going on a fun trip. It’s like I’m going on a flight somewhere fun. It will have a book that I may or may not read because you can’t always concentrate when you’re in there, because you’re getting chemo, but so are a whole bunch of other people. There are beeping noises, nurses coming in, and doctors coming in. The receptionist comes in with your next appointments. There’s a lot of constant coming and going.
So I have a book in there that I may or may not read. I have my AirPods that I can use to listen to something. I have something to drink while I’m there, something to eat while I’m there, but you really don’t feel like eating or drinking, or at least I don’t. One thing that I like to do while I’m there is talk to people and make friends, and that has helped tremendously. I have what I call my “chemo best friend.” Her name is Lisa, and we are on the same cycle, but she actually just switched her cycle, so I hope that we can still stay together. We’re there, and we talk to each other because it’s a very long day.
The other thing that people don’t tell you is that, with my treatment, they first give you a steroid. I say that that steroid makes you “wired but tired.” Your mind is going, and you just want to go, go, go. This actually lasts me for several days, where my mind is super active with ideas and things, and I want to do all this stuff, and everything’s racing in my mind, but physically I am tired, and I can’t sleep because of the steroid. That was something that was really, really hard for me. The first time that I got that steroid, I thought, “This doesn’t work well with me,” but it might not affect everyone that way.
How stage 4 stomach cancer changed my outlook on life
Cancer has really changed the way I look at life. It’s not just me, and it’s not just with a cancer diagnosis. Anyone — you don’t know when your last day is going to be on this earth. So what do you want to do with the time that you have left?
I have really looked at my job, my friends, and my family. The big thing that drives me a little bit crazy is that everyone says, “You can’t let cancer win. You want to live.” I do want to live, but it’s really hard to live day to day and take vacations and do fun things when you have chemo every other week. I bring a chemo purse home with me, so I don’t just have the one infusion day. I have the one infusion day, and then I have Tuesday and Wednesday. I always have infusions on Monday, and I’m usually there six to eight hours. Then I bring home a chemo purse, which runs for 46 additional hours. So all day Tuesday and most of Wednesday, I have this chemo purse.
You don’t want to go somewhere with a chemo purse. I can’t work in a school with a chemo purse because I have an actual line of chemo. A kid could pull it, or something could happen. Then you don’t really feel that great on Thursday. I typically go to work on Thursday, but you don’t feel that good. Then you just have the next week, where you can do something. So you can’t plan big, extravagant plans and go a lot of places because you have to be back by next Friday for your blood work for the following week of chemo.
I take every day as I feel it. I’m blessed every single day that I wake up, and I’m happy to be alive, and I do things that I like to do. I tell people I love them. I go hang out with my nieces and nephews. I still go to work because that’s good for my mental health. It makes me happy to be there. I feel like I’m doing something. I feel like I’m making an impact. Because I work in a school, I see kids all day, every day. People say, “Kris, why would you work right now? You have a stage 4 diagnosis.” I say, “Because it’s good for me here. The kids help me feel happy, and I feel good about what I’m doing every single day.”
What keeps me going through stage 4 stomach cancer
There are a lot of things that keep me going: my family, my friends. Behind me, those are just a few of the cards. I have a huge tote of cards and little trinkets. People will send me things. It’s close to Saint Patrick’s Day, so they’ll send something like a four‑leaf clover, just little love notes and text messages and silly videos that people send you. My family and friends really keep me going.
Movement is huge for me. I know a lot of people say, “You say you want us to move, but we can’t move. We just feel awful.” I am a person who needs movement in my life, and that’s the way I’ve always been. Movement helps me. Regardless of what my day is like, no matter how sick I’m feeling, I try to get up and move. I try to walk. I try to do simple things. I don’t go and run a marathon, but I try to walk. Sometimes it’s a slow walk. Some days, my legs feel so heavy, I feel like I can’t even trudge forward, but I do. I like to do yoga. I like to stretch. I like to swim. I like to spend time in nature. I go outside and walk through my woods with my dogs.
I go down to the beach. We have a beach nearby, and I look at the sunset. And faith and encouragement from people — I just didn’t realize how many people would pray for me. I have strangers reaching out, saying that they are praying for me. An example is at school. One day I came, and there was this beautiful quilt and a note from this women’s quilting club. They pray over the quilt, they make the quilt, and then they give it. I did not know a single person in that quilting club. They had heard about me.
In my position in the past, I was a building principal, and I always left my teachers what I called “love notes.” In that note, I would say something that I saw that I really liked when I walked into their classroom, or something special that they did for a student. I have an entire bin filled with love notes from people that I sent love notes to years ago. Now they’re sending love notes to me.
The greatest medicine is not one that comes from a pill or through my IV or through my port. It’s through the faith and encouragement of all those people who love you, and sometimes it’s people who don’t know you. My daughter encouraged me, when I was brave enough to share with everyone in August that I had this stage 4 diagnosis, to start a TikTok. I’m not a social media person. I said, “I am not getting on TikTok and doing goofy things.” She said, “Mom, even for people that don’t have cancer, you can encourage them and give them little positive nuggets of you.”
I was so surprised when I did that at the number of students — now adults, not little kids — following me. Kids who were in my son’s graduating class, they’re 23‑ and 24‑year‑olds now. My daughter’s class, they’re 20‑ and 21‑year‑olds. Those are kids sending me notes over Christmas break, kids who were on their college break. They wanted to come and see me and make sure that I was doing okay. These were students that I had when I was a building principal or a classroom teacher. All that love and encouragement is really keeping me going, keeping me going for sure.
What hope means to me with stage 4 stomach cancer
My hope for the future is that cancer will someday be cured for everyone, and that they find a cure for all kinds of cancer. Unfortunately, right now, and I know that there are several people on your platform in the same boat, there is not a cure for my type of cancer, and so I will never be what they say “cured.” Hopefully, at least, we will find a way to reduce the amount of cancer cells in my body.
I have so much to look forward to. I hope that I have more time on this earth, and that’s what I talk to God about all the time. When I take those walks, I take something called a “prayer walk” a lot of times. Sometimes those prayer walks are when I’m mad, and I’m talking about that to God. Or I’m thankful for another day here on this earth. It depends on the mood that I’m in. But I take those walks.
I have my daughter’s wedding in September, and my son is getting married, and he is expecting a child. I have so much to look forward to.
I have spent so much of my life taking care of other people’s children in my position that I want an opportunity to take care of my grandchildren. That’s my hope — that I’m here to take care of my grandchildren.
My advice to someone newly diagnosed with stomach cancer
I would tell them that they have to be their own advocate. If you are diagnosed with any kind of cancer — it doesn’t even have to be cancer — if you’re diagnosed with anything, you have to be your own advocate. You need to do your research. You need to talk to people. You need to look at platforms like yours, where there are people who are experiencing different things. Because, as I said before, I didn’t know that you could live without a stomach. I had never had a stomach issue, so I didn’t know that.
You really have to be your own advocate. You have to always put yourself first. Ask a lot of questions. If you don’t understand, just say, “Excuse me. Can you speak English to me? You’re talking medical jargon. I want to hear something in English. What exactly are you saying?”
The other thing that I had to realize is that I’m a person who likes to care for others. I like to do, do, do. As I said earlier, I’m an action person. What I have learned is I have been humbled that I have to accept the help of others, and I have to accept their love. When they want to do something for me, I can’t just say, “Oh no, I’m fine. You don’t need to do anything for me.” I need to say, “Hey, that would be great. Yes, can you bring this over for me? Or can you do this for me?” That was really hard for me, very, very hard. So, I guess, accept people’s help.
Considering life without a stomach after gastrectomy
Originally, when I talked to the first surgeon, before they realized that it had gone to other places in my body, he was going to just do a partial removal. He had explained some things that I was going to have to do and some things that would be different for me: eating small meals, realizing what foods you can eat and what foods you cannot eat, sleeping upright a little bit so you’re not lying down flat, just things like that.
When I spoke to the surgeon at MD Anderson, and we talked about my lifestyle, he said that he felt I would be a good candidate for the removal of my stomach and that that would not be a huge life change for me because I am somebody, like I said, who eats small meals. He said, “You’re not going to be able to eat a large meal. You’re not going to be able to eat a cheeseburger, French fries, and a milkshake.” That wasn’t what I usually did before, anyway.
He said, “It is a long recovery. You will have to sleep upright because you won’t have the flap that helps keep your acid reflux from coming up. You will have to sleep tilted.” I do that now, anyway. He said, “Once you realize what foods work for you, you have to stick to that.”
That is not an issue for me at all because that’s the way I’ve always been. I’m a picky eater. I eat the same thing all the time. I eat the same thing for breakfast. That’s what has helped me. I have gone back up from 118 pounds to about 130‑some pounds now because I set a timer on my phone to remind me to eat, and I eat a little something to nibble on in between when I’m going to classes or whatever.
I think that’s what life is going to be like if I get the opportunity to live life without a stomach. I think mindset is huge. I said from the beginning, I had the mindset that I wanted to have that surgery. I think that I’m mentally prepared for that. A lot of times, when you have a major surgery, it’s because something has happened or you’ve had an accident, and you don’t have time to prepare for it. You have your leg amputated or something; you don’t have time to really process that. I’ve had time to process the idea of a partial stomach or no stomach at all now, and so I’m going in with the right mindset too.
A day in the life on chemo: Treatment cycle at home
I just want to say that for fellow cancer people or people who are also going through it, the day in the life of a treatment cycle for me is all about what happens once I’m home. I had that packed bag. When you’re in treatment, you have a packed bag. Another thing is you have a chilly room, so you might want to bring a blanket or a pillow because it’s always cold in there.
Once I’m home, I’m surrounded by family and friends. I have that chemo purse on me that’s humming for the next 46 hours. I have a timer on my phone that reminds me to eat and when to take a walk. For anyone who is going through this, you just have to try things because things sound really good, and then somebody goes to make it for you, and you get the smell of it, and you can’t tolerate it. I have an entire pantry full of food that, when I’m at the grocery store on my off weeks, sounds really good. I think, “Oh, this sounds good, this sounds good,” and then I can’t eat it.
I have an entire pallet of drinks out in the garage because everything at first, with the first treatment that I had, tasted like metal. I have an entire pallet of different drinks that I can’t drink. So you just have to keep going back to trying different things, tasting different things.
I’m not a person who eats out a lot. But what I have noticed is that on treatment days and certainly the days that I have the chemo purse at home, if somebody’s cooking food, then I can’t eat it. But if somebody brings something to me — like a salad or something that was not cooked or not prepared in my house — then I can eat it. For somebody going through it, keep trying. Keep trying everything. If it doesn’t taste good one time, it might taste okay the next. Food that doesn’t taste good or food that you might not have had a liking for before might taste good.
My perfect example is, I told you that for 25 plus years, I had not had red meat. My son was grilling steaks one day, and I said, “Oh my goodness, those steaks smell so good. I want one of them.” I tried a few little bites because I wasn’t sure how my stomach was going to tolerate it. It had not had red meat in it for 25 years. It was delicious. It was delicious. So now I’m trying to eat a little bit of red meat every week or so, trying to get a little bit. That was something that I would not have ever even touched, and I had not touched it for 25 years.
Try things. Be willing to be open to things that you have not had before and see. Chemotherapy and immunotherapy might be the medical plan for me; those are what we’re doing right now, and possibly surgery. But I feel like mindset, movement, nourishing the body both inside and out, and faith and encouragement are my personal plan. Those are the things that I hope will help me control the situation a little bit because I’m a bit of a control freak. It helps me control it, and these pieces that come together that are just as vital to my survival as the chemotherapy and immunotherapy. All those other pieces are huge.
Practical chemo tips: Lips, mouth pain, deodorant, and smell changes
I didn’t know if you wanted just a few tips that I had put in there, like nipple cream for your lips. I know that sounds bizarre — who would think of nipple cream? But somebody told me, “You need to get this.” That worked because with my first ten treatments, the chemo they had me on made my mouth get sores around it, especially in the corners of my mouth. It was summertime, and I would put that on, and it worked great.
Another thing is, before chemotherapy, I was a mint person. I love mint gum, love mint tea, and would suck on the circle mints all the time. Candy canes at Christmas were my favorite. But mint really hurt my mouth and my tongue during the first ten treatments. It was horrible. It would burn, and I was rinsing my mouth out. Somebody said, “Get cinnamon toothpaste.” That’s what I got. I got cinnamon toothpaste, and it works wonders. I can tolerate it much better.
It’s just crazy things. Another one — this is some people’s favorite TikTok — is when I talk about deodorant. Who would have guessed that deodorant would be part of your conversation when you’re going through chemotherapy? Sometimes the chemo — I don’t think other people can smell it the way the person getting the treatment can smell it. When they’re pushing certain drugs in you, I’ll say to the nurse, “Can you smell that?” She’ll say, “I don’t smell anything, Kris.” I’m like, “Oh no, it really stinks.” The same thing with deodorant. I can smell the chemo coming out of me. It is disgusting. So I’ve tried a million different kinds of deodorant.
It’s not just trying different kinds of food and drinks. You have to try different kinds of lotion, chapstick, toothpaste, deodorant, whatever, because your body changes so much and so many things are getting put in you.
Hidden chemo realities: Bathroom rules, separate laundry, and staying home
The other thing that no one ever told me is, with the chemo — and I think it’s with chemo, but also with the chemo purse — is that I need to use a different toilet. No one in my house can use that toilet. When I come home, and I have the chemo purse on, I need to use just this one toilet. I have to wipe it down with disinfectant wipes, then flush twice.
That’s one of the reasons why on the days that I have my chemo purse on — number one, I can’t go into a school with it, like I said, because I have that chemo, and we could have a chemo radioactive disaster. The other thing is, I don’t want to go anywhere and use a public restroom because I don’t want to put anyone else at risk. When you get chemo, and you’re living in a house, we’re fortunate enough to have more than one bathroom. But what if you have one restroom, and every single time you have to run to the bathroom, you have to double flush and wipe it down with disinfectant? It’s crazy things like that that I had no idea were part of chemotherapy, that those are some of the things that you have to do.
With that first treatment, I had a lot of cold sensitivity. They said I might get it, but I didn’t know I was going to get it for sure. It was summer when I was having that chemotherapy, and I had to wear gloves — winter gloves. Then, if I was going to touch food, I put rubber gloves on top of the winter gloves. Even to reach into the refrigerator to get an egg — I didn’t know I was going to have that cold sensitivity. I wanted an egg for breakfast. I went in and touched it, and when I touched it, I dropped it immediately because it felt like lightning shocks going through my fingers. I still have the side effects of that with my fingers and my feet. I have a lot of neuropathy.
Laundry detergent was another thing. I’ve always used the same laundry detergent. I love the way it smells. I cannot stand the way it smells now. My family still uses that detergent, but I have to use a no‑scent laundry detergent. Not only do I have to use a separate toilet, but I also have to wash my clothes separately. I can’t wash my clothes with anybody else’s clothes.
I’m trying to be very careful. I don’t want to expose anyone in my family, obviously, and I don’t want to expose anybody in public either. That’s why I try not to go places, because you might be somewhere and you might have to go to the bathroom and you have that chemo purse, and you really don’t want somebody else going into the bathroom after you. I usually stay home on those days, and you don’t feel really great on those days either.
The power of community: “Moochi Strong” and sharing my journey online
When I was talking about family and friends, another example that I should mention is my staff. They didn’t tell me. I came in one Friday, and they all had periwinkle — that’s the color of my cancer — and their shirts said “Moochi Strong.” All the staff were wearing shirts that said “Moochi Strong,” and the kids were all dressed in either purple or light blue. The teachers had talked to them, and the kids don’t know what it is, but even kids that I don’t know say, “Hey, you’re the Moochi Strong lady.” There is so much support from so many people. It’s insane. I’m so fortunate and so blessed to have that many people behind me.
You think that in June, July, August, before I shared with anybody, in those beginning months, I just had this small shell of people supporting me. Once I was brave enough to open up and let people know what I was going through, I felt like I had an entire world helping me, looking out for me, and praying for me. That’s huge. So even if you’re a very private person and you don’t want to open up, take the time to process it. That’s what I did. I took some time to process what I was going through. I think I wanted to have some things to tell people. I didn’t know anything in the beginning. I just knew that I had this cancer, but I didn’t know what they were going to do. Then we changed from four treatments to ten treatments. I wanted to have an idea of what my course of action was going to be before I shared it with the world. Once I shared it with the world, I had strangers reaching out to me.
Be brave to get out of your comfort zone. Never in a million years — I don’t have Facebook — I thought I would be doing this. My daughter said, “You have to do this, Mom. People need to know your journey and that it might help them.” That’s my goal. That’s my goal for doing this right now, and that’s my goal for my TikTok too: to help anyone who might need to learn one thing. You’re going through treatment, and your mouth is burning, and you’re like, “I don’t know what to do.” I hope you watch my TikTok on cinnamon toothpaste. Or if your mouth is so dry, I hope you look on Amazon for nipple cream. Just things like that.
Symptoms: Issues swallowing, swollen gland in the neck
Treatments: Palliative chemotherapy was offered but declined, nutritional changes to support her comfort and energy, meditation and mindfulness practices, self-directed healing methods
From Hip Pain to Metastatic Breast Cancer: How Mom and Teacher Erica Shows Up for ALL of Her Kids
Erica lives with metastatic breast cancer. She describes herself first as an elementary PE teacher and single mom to two active kids, and secondly as a patient. She was initially diagnosed with stage 1 hormone-positive, HER2-negative breast cancer in July 2024, and believed she was finally moving back into “normal life” after chemotherapy, a double mastectomy, and reconstruction. When new, relentless pain in her hip, ribs, spine, and shoulder blade led to an ER visit, scans and a biopsy confirmed metastatic breast cancer that had spread to her bones. The news, delivered abruptly in the middle of the night, felt devastating and unreal. She spent a long time in denial, trying to process what this diagnosis might mean for her future and her family.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Today, Erica’s treatment for metastatic breast cancer includes a monthly hormone-suppressing injection and regular scans, along with integrative care, supplements, and a strict routine to support her health. She previously tried a combination of a targeted therapy and a hormone therapy drug, but the combination caused severe fatigue and low blood counts, so her oncology team adjusted the plan. Targeted radiation to a painful hip lesion around the femoral head gave her back the ability to walk without crutches, teach more comfortably, and be present in the gym again. She also manages hot flashes, tiredness, and brain fog, making daily choices to modify workouts and protect her bones while still staying as active as she safely can.
Erica’s experience with metastatic breast cancer has changed every part of her life: how she parents, shows up in her classroom, and thinks about the future. Her children know she has cancer and see her as a fighter, but she works hard to shield them from the hardest moments, often crying alone in the shower or car instead of in front of them. At school, students and families surround her with cards, T-shirts, fundraisers, and a deeply felt sense of community that has eased some of the financial burden of cancer treatment.
At the center of it all is a quiet, disciplined determination. Erica organizes her days around movement, nutrition, supplements, work, faith, and time with her kids. She talks openly about scanxiety and uncertainty, while also defining hope as being there to see her children graduate, get married, and have kids of their own. For her students, she keeps repeating one message she lives out herself: you can do hard things, even when life looks very different from what you expected.
Watch Erica’s video and read the edited transcript of her story to learn more.
Staying connected to meaningful roles, like teaching and parenting, can help some patients with metastatic breast cancer feel more grounded and “normal” in the middle of constant medical appointments and scans.
Adjusting treatment plans when side effects become overwhelming is not a personal failure; it reflects how a cancer responds to therapy and the need to find an approach that supports both effectiveness and quality of life.
Community support from coworkers, students’ families, and strangers can ease the financial strain of metastatic breast cancer and remind patients that they do not have to navigate the experience alone.
A universal truth in Erica’s story is that it is possible to feel deep fear and grief and still practice gratitude, faith, and hope in the same breath.
She describes a powerful transformation from denial and shock after her metastatic breast cancer diagnosis to a disciplined, intentional way of living, where she structures her days around her health, her faith, and her children’s future.
Name: Erica H.
Age at Diagnosis:
Stage 1: 39
Stage 4: 41
Diagnosis:
Hormone-Positive, HER2-Negative Breast Cancer
Staging:
Stage 4 (Initially Stage 1)
Symptoms:
Stage 1: Appearance of lump in left breast
Stage 4: Severe pain in hip, ribs, spine, and shoulder blade
Treatments:
Surgeries: double mastectomy, reconstruction
Chemotherapy
Cold caps
Radiation therapy
Hormone therapy: aromatase inhibitor (letrozole)
Targeted therapy: CDK4/6 inhibitor (ribociclib)
Integrative care
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
My metastatic breast cancer diagnosis and teaching career
My name is Erica. I was diagnosed the first time with stage 1 hormone-positive breast cancer, HER2-negative, in July of 2024. The second time I was diagnosed was on October 31st, 2025, with stage 4 metastatic breast cancer, same hormone-positive, HER2-negative.
I am an elementary PE teacher. I have been doing that for about 12 years now.
A day in the life: Teaching with metastatic breast cancer
A typical morning: I am feeling good enough right now that I like to go to the gym to work out, then come back and get my two kiddos ready for school. They get to go to school with me, so that’s perfect.
I go to my elementary school, and when I get there, I am in charge of setting up the gym for everyday activities. We do different things. Another PE teacher does the parent drop-off while I set up. We have some fifth graders who help us set up every day for PE.
We have ten total classes a day, and they are 30 minutes apiece. Everyone gets to have PE every day at our school, which is awesome. I love that.
After that, I coach basketball. That just ended, but I did coach my daughter and my son. That was my sport too, so I coached both of them. Now we are switching over into the spring sports, so now I am their taxi driver to all their different sports.
Throughout the day, I take different vitamins and supplements four times a day. I am taking a lot of different things. I have another medication, the hormone suppressant that I get injected with every month at my oncologist’s office.
Monthly hormone injections and bloodwork
Usually, when I go get my injections, they do blood work for me every single month, too. Before I get that injection, I get my blood work done to make sure that my levels are still good. Then I get my injection.
I try to do that before school because I’ve missed a lot of school, and I don’t want to miss it if I don’t have to. So I usually go straight to school from there.
This injection hasn’t been very bad. The injection itself isn’t bad. It is sore; they put something on, and they numb me before they do it, but I don’t really have side effects that hinder me from doing my job or anything like that.
Since it’s a hormone suppressant, I have hot flashes. That’s the biggest thing that’s bothering me right now. I haven’t had a ton of joint pain. When I was on ribociclib, I did notice my hair was thinning again and things like that. But I’m not on that anymore, and I’m not as tired. When I was on that, my white blood cell counts were very low, so I was really exhausted.
By just doing this hormone suppressant alone, I’m not having as bad a set of side effects as I was before. I’m lucky that I’m feeling as good as I feel right now. I feel so good.
How my stage 4 diagnosis changed my daily life
When I was first diagnosed, I was in a ton of pain. It was super scary, obviously. There were days when I was thinking, “How am I going to do this?” I was in so much pain.
I had a lesion on my right hip, right where the femoral head goes into the hip socket, and that was causing me a lot of pain. Some days I needed crutches. I couldn’t walk, and I was thinking that was going to be my new normal, and hoping that it wasn’t.
Luckily, I went and met with a radiologist, and they said they thought they could do four sessions and that would be able to help me. That was targeted therapy. Since I was in so much pain, I decided to do that.
My last session was on Christmas Eve. It actually made a difference really quickly. They said it could take weeks, but I was lucky that it did something quickly for me. I was able to walk, and I didn’t have that pain. I had been limping, and everybody was worried about me and asking my kids questions. It looked painful. It was painful. It was hard to walk.
I had to sit down a lot while I was teaching instead of being active like I usually am. Luckily, that has changed. I’m very thankful that that worked out for me.
Why I continued teaching during treatment
I’ve always been an active person, and I know that breast cancer slowed me down. My kids go to the school too. If I just sat at home by myself, that is when my brain starts running with different thoughts. I like to stay busy.
I love my job, and I love seeing my students every day. They have been awesome. They have sent me so many cards, and they are always checking on me. I don’t like them to worry about me either.
I’m in a hard position with the elementary kiddos because they know that I have it, and they’ve said some really silly things to me. They hate that I have it, but I do feel like I’ve been able to show up and still be a good PE teacher.
I do have a little bit of brain fog. If I’m trying to talk to classes about different things that we are doing that day, I’ll lose my train of thought more regularly than I used to. But I need to keep a routine. It keeps me more positive, and I just like being around them.
If I sat at home and did not work, I think that would cause me to spiral a little bit and just sit with what’s going on.
Working around germs during metastatic breast cancer treatment
My doctors, my oncologists, were really concerned about me being around germs. They said that I could wear a mask if I wanted to, to protect myself. I feel like sickness has been so wild lately.
Everybody has been sick. My daughter had flu A, and then a couple of weeks later, she got flu B. In between that, my son had strep. So not only do all the kids in the elementary school have germs, but my own kids do too. Somehow, I have been able to avoid that. I haven’t gotten the sickness, which I’m really surprised about.
They were really worried about that for me. I do think that some of the supplements that I’ve been taking have helped me stay healthy during this. I think that being in the sun and being outside and doing things like that helps keep my natural immune system up too.
Walking into the gym each day with my students
We get every class for 30 minutes a day, so it’s something new every 30 minutes. We are not with the same students all day, and every class is something different. We move on pretty quickly.
I’ve been doing this for so long that I don’t put too much thought into it. This is what I’ve done, so I go to work and do what I normally do. It hasn’t been too different. Now that the kiddos have seen me able to walk without limping, there haven’t been as many questions as there were in the beginning.
They tell me they hope that I feel better and say they are sorry that I have cancer. I had one student who told me that his grandma had what I had, but they had to put her down. He didn’t mean it like that; it was just coming from the mouths of babes. They all mean well.
When I go in, it’s just another day for me. I’m doing what I love to do, and I’m thankful that I have a job that I love. My coworkers are great, and the whole school system has really pulled together for me. They have supported me in different raffles and other ways. They’ve been amazing. I’m lucky with the school district I’m in and with all the students and their families.
Community support, fundraisers, and the financial burden of metastatic breast cancer
One of my coworkers is one of the high school football coaches, and I teach some of the sons of the football coaches. The head football coach and the team always have a breast cancer awareness game. They did fundraising for me that night.
They sold t-shirts that everyone in the district or anyone at all could buy. People bought a bunch of shirts, and they showed me support that way. Everyone in the school was wearing those shirts one day. It was pretty emotional to see that support.
That was the first time around. The second time around, they set up a GoFundMe page for me. It’s shocking to me, the amount that they raised for me, because treatment is so expensive. I never realized how expensive it can be. I’m a single mom and a teacher, so it was very helpful.
Strangers and everybody in the community have shown up. I don’t know how I would have done it without them. My integrative doctor has told me about getting out of fight-or-flight mode. I asked how I was supposed to get out of that when I am thinking about fighting incurable metastatic breast cancer.
I think taking that financial burden off of me has helped me a ton.
How teaching helps me feel normal
Teaching has absolutely helped me. It makes me feel normal. I get to do the things that I love, and I get to see my kids at school interacting and being normal. It makes me forget about cancer, especially when I feel good.
When I was limping, that was a constant reminder. Even just transitioning kids from one class to the next was really tough. Now that I’m feeling much better after radiation and everything, I’ve been able to live my normal life again.
The hidden discipline behind living with metastatic breast cancer
Right now, I have to be so disciplined. People always say, “You’re so strong,” and I do feel like I’m strong, but I don’t feel like I have a choice with my two kiddos.
I am on a special diet, and I take different supplements four times a day. I’m trying to move my body every day. I’m trying to get in the sunlight every single day. I’m trying to keep my house clean, do the normal chores, and take my kids to practices.
It’s very time-consuming to get all the things in to make myself as healthy as I can, so I can try to keep my cancer stable or even shrink the tumors. I have to be very disciplined. I am tired, and I don’t want to work out, but I know if I keep my body strong, I am giving myself a better chance.
I’m not drinking sugary drinks anymore. I’ve been on a keto diet, which is hard for me — no snacks or coffees like I used to have all the time. I have to be really disciplined, and it’s really, really tough.
Finding motivation in my children
My kids are my motivation. They are why I do all of this. I want to see them grow up, and I just want to be here for them. That is my motivation.
I have a ten-year-old girl and an eight-year-old boy. Their birthdays are both in April, so next month she will be 11, and my son will be 9.
My first symptoms and path to my metastatic breast cancer diagnosis
I finished chemotherapy in February of 2025, and I had my exchange surgery because I had a double mastectomy. I had to wait a while to work out, maybe six weeks. After that, I was working out and started to get pain in my shoulder blade and in my hip.
I blew them off. I thought I had injured them somehow from working out. That went on and off for a couple of months. I couldn’t figure out why it wasn’t getting better or what I did to hurt it. Metastatic breast cancer never even crossed my mind.
The pain got pretty bad, and I was sick at a certain time, too. I wondered why I couldn’t get rid of this sickness. My body was aching so badly, and I could not figure out what was happening. The pain kept getting worse and would not go away. Even sitting hurt.
My boyfriend saw me crying because of the pain and said, “We’re going in. We’re going to at least get an X-ray or see what’s going on.” We went to the ER and sat there. We didn’t get checked out until probably 3 a.m. We went in around 11. I was so tired and delusional.
The doctor finally came in. He didn’t really have the best bedside manner and immediately said, “Yeah, it’s all over. We’re assuming it’s metastatic breast cancer.” I asked if he was sure and why he thought that. He said, “With your history.”
I was still not believing that was true. I thought there was no way. We were looking up other causes, like lesions, which could be something else. It wouldn’t have to be that. But they admitted me and did all the scans.
They did CT scans and MRIs with and without contrast. I was in so much pain during all that. They had me on all kinds of pain medications to try to keep me comfortable.
That’s how I found out. That’s what they said there. While I was admitted, they did a biopsy, and that confirmed it. It was very overwhelming and very hard to swallow that it was really happening. I never expected that. I feel like I’m one of the healthiest people I know. I never expected that, but here I am now.
Hearing the official metastatic breast cancer diagnosis
I was in denial. I didn’t believe it. It took me a long time to actually sit with that and cry about it and mourn that this is what is happening now.
I didn’t know what that meant. If you Google it, it’s very scary. When I first found out, it was bad. I was devastated. My whole family was devastated. We thought it was dire. I was thinking it was going to be a short period of time that I would be here. I didn’t know.
It was very scary. I feel like I just numbed out about it. It was really hard to accept.
How far the cancer spread
I had it on my shoulder blade. I had it on my femur. I had it in some places on my ribs. I had been having rib pain, too, and they found I had a broken rib from the lesions.
I had it on my ribs, my sternum, my spine, my femur, and my shoulder blade. My shoulder blade was causing me a ton of pain, too. Somehow, I didn’t have radiation on that one, but I haven’t felt that pain since I was in the hospital when I was first diagnosed. I don’t know why, but I’ll take it. I don’t feel that pain anymore.
All my treatments, from my initial stage 1 breast cancer to now
When I was first treated, I did four rounds of chemotherapy. I don’t know if that’s why I have these little pieces everywhere. I did a cold cap, so my hair’s still kind of wild, but I did cold capping during chemo.
They wanted to put me on a hormone suppressant, tamoxifen. I was on the fence about that and trying to decide. I ended up being diagnosed with metastatic breast cancer before I started taking that. That always makes me wonder if that’s what caused it, but some people have taken it and still had it come back.
There is no real right answer. I’m not going to blame myself for that because that would be even worse for me. I hadn’t started tamoxifen yet because I had heard about other people getting cancer from that as well. It’s a lot to take in and to know what to do. I had no idea, and I was trusting my doctors and trying to see what to do.
After that, when I went back, I had the same oncologist. My sister, right after I finished chemotherapy, was diagnosed with breast cancer as well. She had triple-negative breast cancer, so a different kind than mine, but we both have the same oncologist.
I went back in, and they put me on ribociclib and letrozole. I was not handling that combo well. It was making my numbers drop completely, so they took me off of that.
I am still getting the hormone suppressant injection every month. I have the option to either get my ovaries out or continue the shot. Right now, I’m doing the shot, and my oncologist is on board with continuing this since I’m stable. We’ll probably move on to something else if it shows progression.
Her goal for me is to put the cancer in the trunk. She says it’s always going to try to get back into the driver’s seat, and we just want to keep putting it back in the trunk. That’s our goal.
My treatment schedule around teaching and current side effects
Once a month, or every 28 days, I go get my injection and my blood work. I don’t have to miss school because I schedule that before school. My school doesn’t start until around 9:00, so I have time.
Every Thursday, I go to my integrative doctor and do different supplements and treatments with him. I get adjusted lightly because I have a risk of fractures due to my lesions. I go to him every week, every Thursday. I miss about an hour of school, but my co-teachers cover for me during that time. That’s kind of my plan period. I usually come in during the middle of my daughter’s class after that.
Every three months, I go for my scans. I do have to take off for that. I get different scans to make sure there isn’t progression or to see if there is progression.
Side effects right now, honestly, have not been that bad aside from the hot flashes and being tired. Then I think about how I’m not the same as I used to be. I can’t do the same things. I go to the same gym, but I have to modify a lot. I can’t do all the jumping because I could fracture something due to the lesions.
I’m tired, and the hot flashes make me not get as much sleep. The brain fog makes me feel like I’m not as sharp as I used to be, and that might be from all the medications and the chemo. But overall, I am feeling pretty good right now, and I feel blessed to feel this well.
My thoughts on clinical trials and future treatment options
The only clinical trial they’ve wanted to try with me so far was just a kind of testing. It wasn’t a new drug; it was a different way to test it. I opted out of taking that because I would have had to stay on the combination of ribociclib and letrozole, and I had gone off that anyway because it wasn’t working well for me.
I haven’t been in any trials yet. There is always that option, and I’m open to those things. I feel like even from when I was diagnosed to when my sister got diagnosed, there had already been advances. She was doing different things that I didn’t have the opportunity to do because they weren’t available yet. It’s wild that it’s progressing that fast.
There is always that option, but my oncologist hasn’t found one that fits me right now.
Coping with hard days and mental health
I do feel like I’m a positive person, but I am human. I definitely have rough days. It is hard. That’s why I try to keep myself busy. Being around all these little kiddos keeps me in a better mood.
I do have days where I break down, and it consumes me, but I try not to sit in that. I want to live for the day that I have and try to be grateful.
I’m 41 years old and was diagnosed with metastatic breast cancer at this age, thinking that I’m healthy, and especially thinking I was moving on from having the initial stage 1 breast cancer and that my life would finally go back to normal — and it didn’t. Now this is my new normal, and it’s tough and overwhelming a lot of the time.
I try my best not to sit in it. I believe in God, and that helps me a lot. My faith gives me hope, so that helps me.
How metastatic breast cancer changed my roles as mom, teacher, daughter, and girlfriend
This part makes me emotional. I used to be a high school basketball coach. I’ve been coaching my little ones, and my goal was to get back to coaching high school again. But I worry — am I going to be able to? Am I not going to be able to walk again? I don’t know what’s in the future, so I worry about that.
I am divorced, and about two weeks after I started dating my boyfriend, I was first diagnosed with breast cancer. He hung around, we got through it, and then we celebrated in Mexico. Then I found out I had metastatic breast cancer.
That is hard for me to process as a girlfriend because I want to possibly get married again. He has two young kids as well. I wonder if I even want to put them through that if I might not be here. Those thoughts go through my head.
My parents have been through so much because of this — my sister being diagnosed, me being diagnosed, and me being diagnosed again. That’s a lot of stress on them.
I hate that they’re worried about me. I want them to live their retired life and enjoy themselves, not worry about me. But I know I would worry about my kids, too, so I get it.
My kids, I don’t think they know how serious this is, and I don’t really want them to. They just know their mom as a fighter and think I’m going to beat it again. I want them to think that. This is nothing a little kid should have to think about.
A lot of things I want to do, I’m nervous about doing now. Even going on a field trip with my daughter — the fifth grade gets to go on a Smoky Mountain field trip to go hiking, and I’m going to be a chaperone. My principal said we might need to get somebody else just in case I’m not able to do it. That is hard.
I want to be able to do those things with my kids and have those memories with them. It has changed everything.
Talking to my kids about cancer and protecting their childhood
I bring my kids up in church, too, so I think they have that faith. We pray every night about things like that, and I think that gives them a little comfort. If something were to happen to me, they believe in heaven, so I think that helps them.
I think I’ve been able to hide the hardest parts from them. They haven’t seen me on really hard days. I try to keep that from them. I cry in the shower and in the car, but I don’t try to let them know.
They see me doing well right now. I feel great, so they’re not seeing a lot of the hard parts. I’m going to try to continue to do that for now.
Scanxiety, stable breast cancer, and tumor shrinkage
There has been no growth. I’m stable, and there has been some shrinkage, which makes me feel great. That’s a positive thing.
Since I came off ribociclib and letrozole, my oncologist wasn’t sure how my scans would look, but she was happy with them. She told me to keep going with this plan.
Scanxiety is real. I thought I was fine. We were driving to the hospital, and as soon as we got there, I just lost it. I didn’t realize I was keeping that in. I think I even hid it from myself.
Once we pulled up, it hit me: what do you do if it does progress? I don’t know yet. I know that happens for so many people. It is in the back of my mind, but I try to push that aside and live for the day.
What hope means to me now
Hope for me is seeing my kids graduate, seeing them get married, and seeing them have kids. That’s my hope.
I’m going to do everything I can to be able to do that. I know I don’t have the final say, but I’m definitely going to try. That is what I live for, and that is why I am so strict about everything that I do.
It’s hard, but it’s worth it. That is my hope.
Life lessons I want my children and students to learn
For my students, I always tell them they can do hard things, and I want them to believe that. Things are hard, but the reward of seeing your hard work pay off is worth it.
I want them to believe in themselves and know that they can do hard things. That is what I want to leave them with.
How metastatic breast cancer changed my view of people
I’m such an introvert, so it has surprised me how much people care and how many good people there are out there. I’ve been blown away.
It makes me not want to be as much of an introvert because there is so much good out there. I wish I could do for others what people have done for me. It’s been amazing. It’s wild to me.
I really love people now, even though I’m an introvert.
Symptoms: First instance: appearance of lump that later on increased in size, orange peel-like skin around inverted nipple, persistent ache under right arm; second instance: appearance of lump
Treatments: First instance: chemotherapy, targeted therapy, hormone therapy; second instance: surgery (mastectomy), chemotherapy, radiation therapy, CDK 4/6 inhibitor
Symptoms: Appearance of lump in right breast, significant fatigue, hot flashes at night, leg restlessness leading to sudden, unexpected leg muscle cramps
Treatments: Chemotherapy, hormone therapy, PARP inhibitor, integrative medicine
Tongue Cancer at 37: Brittany’s Misdiagnosis, Major Surgery, and Finding Her Voice Again
Brittany’s tongue cancer experience began with a simple moment at the bathroom sink and turned into a fight for her own diagnosis, survival, and identity. She was 37, newly married, and thriving as a project manager, actor, and burlesque performer when she noticed a red patch on the side of her tongue and severe ear pain that felt like an infection. Over the next five months, she was misdiagnosed multiple times, dismissed as being “too young for cancer,” and even accused of seeking pain medication, all while the pain intensified and a hidden tumor under her tongue made eating nearly impossible. She lost 35 pounds and watched her body change dramatically before an ENT finally took her seriously, ordered imaging, and confirmed squamous cell carcinoma of the tongue (tongue cancer).
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
By the time Brittany reached Dr. Michael Moore at Indiana University, the tongue cancer had spread to her lymph nodes. Her team moved quickly. She underwent a 12-hour surgery that removed 70% of her tongue and 22 lymph nodes. Surgeons reconstructed her tongue using tissue from her back, installed a percutaneous endoscopic gastronomy or PEG feeding tube, and performed a tracheostomy so she could breathe while she healed. Later, she went through 33 rounds of radiation with a tight immobilizing mask and six weeks of weekly chemotherapy. Complications like a neck fistula, profound weight loss, and persistent side effects layered onto the already intense treatment.
Recovery meant beginning again with basic functions. Brittany now works closely with a speech therapist twice a week to relearn how to speak, swallow, and manage food safely. She uses tools to stretch her jaw, practices step-by-step swallowing techniques to reduce the risk of aspiration, and celebrates small but meaningful wins, like the first time she managed to eat Oreos dunked in milk. Socially, she navigates the emotional impact of not being able to eat like others, living with scars, a feeding tube, and a voice that sounds different than before.
Through all of this, Brittany’s transformation is not about becoming someone new but recognizing who she has always been. She describes herself as a “chatterbox” who loves people and connection, and she’s leaned into that strength. Today, she does speaking engagements on side effects, self-image, and self-advocacy, participates in support groups at Indiana University, and hopes to speak at future head and neck cancer symposiums. She urges others to advocate for themselves, ask for help, and remember that “no one can navigate cancer alone.” Brittany has also started blogging about her experience, hearing from readers who feel less alone because of her honesty. She emphasizes that life can even be better after cancer, and encourages patients to seek out community, patient advocates, and peers who truly understand what they’re going through.
Watch Brittany’s video and read the edited transcript of her interview below.
Self-advocacy can be life-saving; she was misdiagnosed for nearly five months and believes that insisting on more opinions is the reason she’s still here.
Tongue cancer and head and neck cancer treatments affect every part of life, including speech, eating, weight, appearance, work, and relationships; not just the tumor site.
A universal truth for patients: no one can navigate cancer alone, and support from loved ones, peers, and professionals is essential for both physical and emotional healing.
Brittany’s transformation is about reclaiming her voice and purpose. She’s moved from being a performer to a patient advocate, speaker, and blogger who helps others feel seen.
Trauma from delayed diagnosis and aggressive treatment can coexist with hope; she reminds others that life can even be better after cancer and that small milestones (like eating a favorite cookie) matter.
Name: Brittany Z.
Age at Diagnosis:
37
Diagnosis:
Tongue Cancer (Squamous Cell Carcinoma of the Tongue and Lymph Nodes)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
My husband and I met in 2022. His name is Mason, and we met in a murder mystery dinner theater. We were both on the house staff. I was divorced, and I was just like, “I’m going to do what I want to do,” so I joined the cast. And so I’ve been a project manager for years, and was with a company and lived in San Diego at the time.
I also had my own burlesque show in San Diego. So if I wasn’t in dance class, I was producing a show, making a costume, or something like that. So the majority of my time was working, acting, and burlesque. And then my husband and I met, and he rounded me off.
We are tiki bar enthusiasts and karaoke enthusiasts. So if we went out, we were at a bar and just having a great time. So that was pretty much life before this.
From being a performer to losing 70% of my tongue to tongue cancer
I actually started doing speaking engagements now, and what I focus on a lot is side effects and self-image. Cancer affects everyone. In my support group, there are a lot of older people, but that’s not all it is. It’s young people as well. I’m 38, and I was diagnosed at 37.
For me, the biggest part came before. I was actually misdiagnosed four times for many months. So my tongue became very painful, and I couldn’t eat, and I dropped 35 pounds. People don’t realize how much your tongue helps you to eat. So I’m actually learning how to swallow. I still have a feeding tube as well, but that kind of abolished a burlesque career.
I have a tube in my stomach. My neck looks very different. I look very different. I’m 35 pounds lighter. My body is different. I say sometimes I feel like a stranger still when I look in the mirror. There are a lot of scars. For most tongue cancers, they will take tissue from other parts of your body to reconstruct. So for me, it was on my back. I actually tattooed over it, but I don’t look the same.
You don’t feel the same during treatment. So having the energy to do those things is just nonexistent. It’s a completely different life.
My first tongue cancer symptoms and early red flags
I was brushing my teeth. I was like, “Oh, my tongue hurts.” At first, I was like, “Did I bite my tongue?” I was looking at it, and I noticed I almost had a red patch on the side. It was exactly down the right side. I was like, “Oh, that’s bad. I should probably make a doctor’s appointment.” By the time I got to that doctor’s appointment, if I stuck my tongue out, it went to the side. I was like, “Oh, that can’t be good.” Everything for me was on the right side.
I started getting insane ear pain, like down inside my ear in here. I’ve heard that for a lot of people, that’s one of the first symptoms. It was like, “Do I have an ear infection?” That’s what it felt like.
So I went in. I actually went to urgent care, and they told me I had shingles, but they were inside my mouth. Oh, that makes sense. So they gave me medication. It didn’t get better; it got worse. So I went back. I went back twice. First, I was actually told I was just looking for pain meds, and they kicked me out essentially. I was like, “No, something is really wrong.”
I stuck out my tongue, and then finally the doctor was like, “You should see an infectious disease doctor because of the rash.” She wasn’t sure. She did some bloodwork. Nothing came back. And then finally I saw an ENT, and she poked the side of my tongue, and I literally got up out of the chair and was across the room in pain, this blinding pain. She said, “We are going down for an MRI.”
So they put me on the elevator, walked me downstairs, and moved everyone else out of the way. I had an MRI and a CT scan. She biopsied me the next week and confirmed that it was cancer.
Five months of misdiagnosis and severe pain
Awful. It was almost five months. And it got more and more and more painful. There was a tumor, tongue cancer, under my tongue. I couldn’t see it. Anytime I would try to put food in my mouth, the pain would literally radiate up my head, like through my forehead. I was like, “Something is not okay.” I felt very close to death.
When I finally got to surgery, they actually didn’t know if I would survive surgery, just because I had dropped so much weight so quickly, and I had no nutrients in my body. My eyes were actually sinking into my face, and even my friends tell me now they were very worried about me even making it through the surgery. They weren’t sure.
Trying to function while in debilitating pain
I was actually looking for jobs at the time, both remote, but we bought a house and immediately had some big house troubles. So I took on an extra job because I needed to pay to have those problems fixed. But I would sit here in my office and just cry because I couldn’t do anything else.
I went to the emergency room once because the pain was so bad. They gave me some pain meds and an IV and sent me home. They didn’t do anything. Everyone thinks that you’re trying to get pain meds. But I knew something was wrong with me. They were saying, “Oh, no, it can’t be something bad like cancer, you’re too young.”
That’s just not true. Even now, it’s all ages, and it’s happening more and more in other people. Someone I know named Beth, who has cancer, is younger than I am. It happens with people in their 20s. Now I see it all the time from making connections and friends online. It doesn’t discriminate against your age.
An ENT finally believed me
Oh my gosh, it was such a relief. She did a scope on me as well, and she said, “I don’t like it. I don’t like the way that looks.” So we went immediately to the MRI, and then she set me up in just a few days with a biopsy.
I woke up from the biopsy, and everyone in the room was crying. So I was like, “Oh, this isn’t good.” My ENT said, “You have to get out of here and go to Indiana University. There’s an oncologist there, Dr. Moore, Dr. Michael Moore, and if I had cancer, he’s the person that I’d go to.”
I was like, “Oh my gosh, we have a plan now. Someone is taking it seriously.” She referred me to Dr. Moore, who saved my life, who is amazing, who got me in for surgery within two weeks, and said, “I’ll do everything I can.” If it weren’t for him, I would be dead, absolutely. I owe him. I tell him this all the time.
He’s just a great buffer, and he’s a great person. When we finally get into the hands of someone like that, it’s like there’s a glimmer of hope. “Finally, someone’s going to help me, and we can take a breath for the first time in all of it.”
Partnering with doctors and speaking to other patients
I really appreciate Dr. Hansen, too, the doctor who finally took me seriously. If it weren’t for those two, I wouldn’t be here. Both of them are wonderful about being like, “I’m the doctor, I can treat you, but I don’t have tongue cancer. So I will point you to places that support you because I’ve not been through it.”
I appreciate that too, because it’s like, “I can see you, I know how to treat you, but I don’t know how it feels.” Dr. Moore and I might actually pair up now, and I come in and speak to the pre-op patients because he’s like, “You’ve had it, you’ve done it.” I appreciate that he does that. Doctors throw a lot of information at you, and then it’s like, “Okay, are you ready?” And I’m like, “No, I’m not.” Talking to someone who’s been through it is just invaluable.
Hearing “You have tongue cancer” as a newlywed
I was absolutely overwhelmed. When you get a cancer diagnosis, I feel like your brain just shuts off to protect yourself in a way. I went through all of that to get here, and now that was just the start of something else. Everyone is different.
For me, the tongue cancer had already gotten to my lymph nodes as well. I had no idea, but I didn’t know if I was going to live. My husband and I had been married for two months when I got the news, and the only thing I could think of was that there hadn’t been enough time to love him properly. Is this the end of it with us here?
I felt that way for my friends and my family, too. That’s what I thought of first. It just hasn’t been enough time to tell all these people how I feel about them. A positive that came out of it is that I don’t wait anymore to tell people, “I care about you, I love you.” I tell people how I’m feeling. I just don’t wait anymore.
In my case, the tongue cancer was so advanced that I didn’t get to make decisions. Decisions were made for me. “We will come in on this day, and we will have the surgery, and then we will have radiation, and then we will have chemo, and we’ll just do our best, but we don’t know how things will go.”
I appreciate the honesty. I want honesty. But it’s hard to know I don’t get to choose. It’s been chosen for me and scheduled, and now I have to do it. It feels very out of control and overwhelming. So those are really the two main emotions that I went through, even through treatment, like I just have to keep going because this is what has to be done.
The devastation of delayed tongue cancer diagnosis
I think about that all the time because I probably wouldn’t have had to have as much of my tongue removed as I did. And then also from PET scan to surgery was two weeks, and it went from not being in the lymph nodes to being in two of them. That’s how quickly this spreads.
So with cancer, you’re just racing a clock. I’m not going to lie, I was mad when everything happened because I was like, “If we had caught this sooner, I wouldn’t have gone through as much suffering, and my husband wouldn’t have been left with so much.” With cancer, time is everything. Even in a matter of weeks, they don’t know how far it’s going to get. So that is the part that was very devastating for me. It was hard to deal with for a long time.
That’s why I tell everyone, please advocate for yourself. You know when something is wrong. If I had not pushed and gone back and seen five doctors, I would not be here. You know yourself the best, and you know when something is not right. So advocate for yourself until you find the answer.
The details of my 12-hour tongue cancer surgery
My tongue cancer surgery involved removing all of my lymph nodes on the right side of my neck. So they did a neck dissection, and they went up through that to remove the tumor. They removed 70% of my tongue on the right side.
Then they did a tonsillectomy just for precaution. The tongue cancer wasn’t there, but it shows up there a lot if it spreads, so they took my tonsils out. Then they took tissue from my back here and reconstructed my tongue for me. They put in a PEG tube in my stomach because I wasn’t able to eat.
So: neck dissection, 22 lymph nodes out, 70% of my tongue removed, reconstructed with tissue from my back, tonsillectomy, PEG tube, and a tracheostomy. That was temporary, just because there’s so much swelling after that surgery.
Waking up after a tracheostomy and with no voice
A big part that people don’t realize is that you can’t breathe on your own after that. So it’s not only all this to your head and neck, but when you wake up, you’re dependent on a machine to help you breathe. To me, that was also super scary on top of everything else. Even knowing that it’s temporary, you don’t know how you’re going to wake up. They don’t know. Something can change in surgery as well. They have a plan, but they don’t know until they get in there what is actually going to happen.
When I woke up, I couldn’t speak either. My husband and I were writing to each other, and I was like, “What actually happened?” That saved me — finding out this is what happened in surgery, this was the plan, and then this was reality. Knowing 70% of my tongue is gone, in the hospital, they’d be like, “Make a sound.” I was like, “I don’t know if I can.” For that first bit, it was just spit and no sound.
There’s a while there where I thought, “What will normal look like after this? What will happen today?” You’re just at the mercy of everyone else, and that’s a terrible feeling, especially for me. I’m someone who very much needs certainty. I’m kind of a control freak. I want to know what’s happening. I want to have a say.
I say this happened to me in life to be like, “No, you don’t always get to have control, and you have to learn to sit with it.” Sometimes I say that was my life lesson through all of this: you have to slow down and give up some of the control.
I don’t have a lot of patience either. Going through this takes a long time to heal. This month is a year since surgery, and I’ve come a long way, but there are days when it’s like, “When is it going to be better or be okay?” You just have to roll with it and do the best you can. It is what it is.
Relearning how to speak, eat, and swallow
I actually have an amazing speech therapist. I see her twice a week, and we focus on different things. A lot of people don’t realize that with tongue cancer and head and neck cancer, there are radiation aftereffects. I can’t open my mouth all the way. So putting food in my mouth or spitting requires so much other facial structure as well as the tongue and the jaw, and so to do all of that, I’ve had to just start from scratch.
I have a lot of tools that manually stretch my mouth. I do exercises so I can hopefully speak a little bit more clearly. You don’t realize how much you use your tongue to eat. If I put food in my mouth, my tongue doesn’t move it. So how do you put that down?
So I’m taking tiny passes and moving it through enough to chew. Then I have a step-by-step process to swallow food or liquid now, because I can’t swallow and breathe at the same time, or I’ll aspirate. I’ve done that a lot of times now, but it’s things that you do on autopilot, and that’s not how it goes anymore.
Working with therapists and other therapists there, it’s trying to figure out what works for you, what’s worked for other people. Some people have prostheses to help them. Everyone is different, and then you have to make adjustments. For me, I have to use my face a lot more to speak so people will understand me. So it’s things like that. They have to figure out what works for you and sit through it.
All the things that they said beforehand that are just automatic are not automatic anymore, and that’s the toughest part. Life revolves around food. Food is comfort. You feel left out. You feel like you don’t belong. Even social situations are based around food. I’m lucky. Everyone around me is very accommodating. All my friends don’t treat me differently, but I have to remind them that I can’t eat like I used to.
It’s such a work in progress, and it’s a millimeter of progress. It feels slow, but if you look back on it, you’ve gone both sides without realizing.
33 rounds of radiation and weekly chemo
I did 33 rounds of radiation. That’s daily for six weeks. If you’re a head and neck cancer patient, you have to have this mask on, and that is a fresh hell that nobody prepares you for.
So they can pinpoint it, they put a mask on you and strap it down so they can be very precise. That was as bad as it sounds.
Then I had six rounds of chemotherapy. I was on cisplatin once a week for six weeks.
Complications: Fistula, weight loss, and “If it’s not one thing, it’s another”
I’m a small person. I’ve never been big. I’m 5’3″ and 100 pounds. I was like 130 pounds at my heaviest, so I don’t have a lot to work with. I had the surgery, and then they irradiated me, and then I had a fistula. So it opened up in my neck.
One day, they put me in the mask for radiation, and that had opened. They didn’t feel it, the fluid going down the back of my neck into the back of my shirt. Then they had to put a straw in it and drain it. It’s just, if it’s not one thing, it’s another. All that just compounds. Treatment compounds. That’s how it works.
Even when we’re done, it’s compounding. You still feel bad for a while. I just had every bad side effect you can have. I was like, I just have a bad case of the flu. I can’t do it. But it healed up. It was fine. But that day, I was like, “I don’t know what just happened, but something is wrong.” Then you have to take it from there and figure out what happened.
Self-image and body image after tongue cancer
I love our support group at IU. I spoke last month, and then I’m hopefully speaking at the Head and Neck Cancer Symposium this year.
A big part of it is the weight loss issues for anyone going through it, but for me, I have a PEG tube in my stomach, so I have that tacked onto myself all the time. I have a lot of scars on my neck and on my back as well, just from all the surgery. So it’s hard to see yourself so differently. I sometimes call this my second skin, because I feel like almost every part of me has changed.
Another thing people don’t realize is the way you speak. People take that as if you’re intelligent or not, or people think that I’m deaf, so they yell at me. Just having to explain yourself all the time — this is why I sound this way, this is why I have the scars, this is why all these other things. Sometimes it’s embarrassing or exhausting to be like, “Hey, this is why.”
I was a dancer before. I did burlesque. A big part of that was using my body to express myself. Now it’s not that I can’t do it; just for me, I’m not in a place to continue that at the moment. A lot of it is confidence. I’m not quite there.
I did a lot of acting before. I don’t sound the same. I don’t speak the same. Even getting a job is difficult. It touched every part of my life. It’s not just the self-image of surgery. It’s the self-image of how to express yourself, and now that’s so different. It’s not just the way it looks. It’s all of you.
You really have to figure out who you are at your core. What are the things about me that haven’t changed and won’t change? Navigating those things helps a lot — I’m still me under here, and the people who love you will still love you.
Being married, and being a newlywed, and now your body is completely different — my husband is amazing. He tells me I’m beautiful every day. But there was a time when he was like, “I’m afraid I’m going to hurt you or break you if I touch you.” That was very, very difficult. It’s not that he wasn’t attracted to me. He was legitimately worried about my body. He said, “I would never want to hurt you.”
People who hug me are like, “I’m trying not to hurt you.” You feel different, and people feel differently about you.
What tongue cancer taught me about myself
I love people. I’ve always been a chatterbox, and I said the universe tried to shut me up, and it just didn’t happen, so — sorry. I love knowing things about other people. The reason why I speak and do support groups and all of that now is that I want to know other people’s stories. I want to know how you persevere. I want to know what’s important to you.
I’ve always been that way. I just love getting to know people. I also will have a conversation with people anywhere, in a bar or out and about, because I want to know too. Everyone has been through things. It’s incredible.
That has not changed at all. Just wanting to help people, make people laugh, make people feel better, just having a connection — that’s always been part of me. Now I would say even more so, speaking to people. I look back on a lot of soul-sucking jobs, and now I’m like, “Maybe this was supposed to happen to me to be able to get away from that and do what I’m supposed to do.”
So I started to think of it that way as well. Just being a good person and seeing people find me — that will never stop for me, and never will. It’s nice to know that it’s the thing that won’t change.
My biggest advice for tongue cancer and head and neck cancer patients
I’ve said it before, but you can’t say it enough: advocate for yourself through diagnosis and beyond. For me, I’m always fighting insurance companies and disability and the system and all these things.
I always had trouble asking for help. You will need help. Don’t be afraid to ask for help. The people around you want to help you. Let them do it. You will need it. No one can navigate cancer alone. Support is everything.
Having other people to talk to is super helpful. If you are going through cancer, reach out to a doctor or a nurse, somebody, and ask them, “Is there someone I can speak to who’s going through it?” Or a social worker and a therapist, because it touches every part of your life — not just physically, but in the head and in the heart. You think about things that you wouldn’t before, and having support to advise you will get you through.
The people who love you always will, and they want to help you. Don’t be afraid to ask for help. Ask for what you need.
For people going through tongue cancer or just anything in life, remember who you are and remember that we want to be here and want to live. Don’t be afraid to tell people how you feel. I don’t think we can say I love you enough. Be unapologetically yourself and tell others how you’re feeling all the time, no matter what.
Finding community, blogging, and patient advocacy
There’s such a great support system on the internet for people with head and neck and tongue cancer, either through social media or through certain organizations. They’re wonderful. It’s been super helpful for me. I have my own blog, so writing about it helps me, and it helps other people. I’ve had so many people reach out and be like, “Reading your blog really helps me, and now I’m writing about my experience. I love it. I’m always like, “Please do that.”
I feel like more places should have patient advocates like me and like Beth, the girl I know who has cancer, because doctors say they see you, but they don’t have cancer. I really wish somebody had been there for me who had been through it. It is on my mind a lot. People get very afraid. They said for me I might not have a great outcome, and that is like — they don’t know how this is going to go.
I’m flourishing, and I just had a PET scan. So don’t give up hope because you don’t know what’s going to happen. Life can even be better after cancer. Reach out to other people. They’re happy to tell their stories and help you through it because it’s a route that nobody wants to be on, but once you’re in it, everyone is there to have your back. We’re all here. Find us.
Symptoms: Sore on the tongue, which caused pain during eating and speaking; changes in the color and texture of the tissue where the sore was located Treatments: Surgery (partial glossectomy, radical neck dissection, reconstruction), radiation
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From Breast Surgeon to Breast Cancer Patient: Liz O’Riordan’s Surreal Story with Rare Mixed Ductal-Lobular Breast Cancer (MDLC)
Liz O’Riordan was a breast surgeon when she unexpectedly became the patient. Her story began when she found a lump in her left breast at 40, after a normal mammogram. She says she had dense breasts, prior cysts, and every reason to believe the new lump was harmless, until an ultrasound revealed mixed ductal-lobular breast cancer (which combines invasive ductal carcinoma (IDC) and invasive lobular carcinoma (ILC) components) and set off a cascade of decisions about chemo, surgery, and long‑term treatment.
Interviewed by: Stephanie Chuang Edited by: Chris Sanchez
Liz opens up about the emotional whiplash of diagnosis when you “know too much.” She talks about dissociating as if the news belonged to “patient Liz,” not the real her, and describes how fear of recurrence quickly drove her into a very dark mental space. Chemotherapy shrank her tumor, but pathology later showed breast cancer, specifically mixed ductal-lobular breast cancer, and spread to lymph nodes. She went through radiotherapy, experienced chronic pain around an implant, and eventually had a local recurrence on her chest wall.
Liz’s experience reveals how cancer can reshape your identity, sexuality, and relationships. She discusses losing her hair, ovaries, fertility, libido, and sense of femininity — saying that “everything that makes me feel feminine was gone overnight.” She describes negotiating intimacy with her husband when sex became painful or absent, and how the couple redefined their connection.
As both surgeon and patient, Liz brings rare insight into gaps in cancer care. She emphasizes the terror of scanxiety, the loneliness after active treatment when doctors say “see you in a year,” and the need to talk about wills, recurrence, and death with clear, adult honesty. She also focuses on debunking cancer misinformation about sugar, parasites, parabens, miracle diets, and supplements that can lead some patients away from effective treatment.
Today, Liz uses her online platform to share writing and videos that offer what she once went looking for: clear, evidence‑based information, validation that “it’s not your fault,” and permission for patients to advocate fiercely for themselves while honoring the complexity of their own experience.
Watch Liz’s video and read the transcript of her interview for more about her story.
She describes how dense breasts and a recent “normal” mammogram delayed her own breast cancer diagnosis, highlighting why self‑advocacy and triple assessment of breast changes matter.
Liz’s experience shows that cancer can alter every part of life, including body image, sexuality, work, and mental health. But over time, it is possible to rebuild a sense of self, even after going flat.
Her perspective shifted from surgeon to patient, revealing a wide gap between what doctors have time to explain and what people actually need to live with cancer day‑to‑day.
A universal truth in Liz’s story: there is no single “right” decision in cancer care — only the right decision for you in that moment, made with the best information available and aligned with your life.
Over time, she transformed her fear and survivor’s guilt into advocacy, using books, blogs, and social media to empower others with practical tools to think critically and feel less alone.
Name: Liz O’Riordan
Age at Diagnosis:
40
Diagnosis:
Mixed Ductal-Lobular Breast Cancer (MDLC)
Stage:
Stage 3
Symptom:
Appearance of lump in breast
Treatments:
Chemotherapy
Surgeries: lumpectomy, breast reconstruction, mastectomy
Radiation therapy
Hormone therapy
Targeted therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
My long training journey to become a consultant surgeon
Oh, crikey. I’m kind, caring, and stubborn at times. I don’t like being wrong. I like to be in control. Definitely the surgeon in me.
I was about 7 or 8. My dad was a surgeon, my mum was a nurse, and when we learned biology at school, he’d give me all the extra bits. Like, there’s not just a small bowel; there are three parts of the small bowel. And I was just fascinated. I loved hearing his stories.
And then when I was 17, we had work experience, and I got to go and watch a bowel cancer operation. And being in that theater while the rugby lads fainted behind me, seeing the bowel being lifted out of the abdomen, this is amazing. It was just, this is what I need to do.
I had no time for ward rounds where they’d spend ten minutes discussing increasing a beta blocker based on the latest trials. I wanted to get in and get my hands dirty. So I think in medicine, you know that you’re a pajama wearer or you’re not, you know, you want to be in that room doing something or you really, really don’t.
So it was five years of medical school, and then it was another 15 years of training. I took four years out to do a PhD in molecular oncology. And then it was another six years. So I became a consultant, which is the highest level, 20 years after I first went to medical school. It’s been a long time. Yeah.
My first breast cysts and early breast cancer fear
So I’ve actually had a couple of cysts before.
Talking about the first one, my husband had just proposed, and he’d gone to sail the Northwest Passage around the top of Greenland. He’d left me for eight weeks, and I found a lump.
And I remembered that evening. I was 36. I was lying on the sofa screaming, howling, “I’ll be dead in a year. He won’t want to marry me, and I won’t be able to wear a wedding dress. My breasts will be cut off.” Just hysterics. But it was just a cyst, and I had very dense breasts full of cysts.
Discovering the lump before my breast cancer diagnosis
And then when I was 40. I’d had a normal mammogram six months before, and I’d had a cyst seen nine months before, and I came out of the shower, and I just saw a lump in my left cleavage, and I thought, “That’s a cyst.” And I never checked my breasts like most women.
“I’m a breast surgeon. It’s not going to happen to me. I’m invincible.” And it was only my mum who said, “Look, just get it checked out. You never know.” And I said, “Oh, fine, but it’ll be nothing.” And I didn’t get seen in my own hospital. I went to the hospital down the road, where I’d actually trained as a junior and a senior doctor, because I wasn’t expecting it to be anything. So the woman who examined me was a mentor, a friend, and a trainer.
Seeing my own cancer on the ultrasound and the dissociation and emotional numbness after diagnosis
So we were on first-name terms, and she examined me. “It’s probably a cyst.” The mammogram was normal. I had dense breasts. Then I went through to have an ultrasound, and I turned to look at the screen, and I saw a cancer. And while they were drawing up the local anesthetic for the biopsy, my surgeon came in and said, “Right, where do you want to be treated? Because I don’t know if I can treat you.” That’s before the biopsy. We knew.
And she then rang my husband, who worked in the same hospital, to come down because I’d gone alone, thinking it was just a cyst. And she said, “It’s cancer.”
I’ve looked after women younger than me who’ve died. I knew what treatment I’d need. I had a rough idea whether I’d be alive in ten years. I have all that information, more than my parents and my husband ever need to know. And it was really hard dealing with that.
It wasn’t real. And part of me still thinks I haven’t had breast cancer three times. And I think it’s me protecting myself from what I’ve seen with patients and my mum.
It was like everyone was crying when they gave me the news, and I was floating, looking down. This is happening to patient Liz, but it’s not real Liz.
There was this definite dissociation. When I was telling my mum about it, she said, “You just sound like you’re talking about a patient. Why aren’t you crying? Why aren’t you upset?” And it was just my way of trying to hang on to some form of control, I guess. Yeah.
Shock, numbness, and fear of recurrence
It was a shock. It was like, “My mammogram was normal. I’m a breast surgeon. I can’t have breast cancer.” Oh. Oh, okay. And then it was, “Right, I’m going to need a scan, and I’m going to need things. I’m going to need treatment.”
It was just that sense of numbness. It’s a really, really great word. And then a bit of denial, a bit of excitement, weirdly, to see what chemo might be like. And I know it doesn’t make any sense, but kind of intrigue and curiosity. And then the fear of recurrence hit really quickly because I knew I’m young, I’m 40. It was 2.5cm on an ultrasound. It was five and a half on an MRI.
I was going through metastatic cancer blogs, trying to find out all the information I could about what might happen to me, that awful fear. And I had to go to a very, very, very dark place so I could then come up from there. But it was just, it was really hard. It wasn’t real. And I think it only became real, even during chemo, but I think it became real when I had the mastectomy.
Coping by expecting the worst
I think I’ve always been a cup-half-empty person. I always imagine the worst, always the worst that’s going to happen. I never think of the positive. That’s just who I am.
Again, I’ve looked after women younger than me who’ve died of breast cancer. And I just wanted to scare myself. I needed to know. And it wasn’t healthy. It wasn’t good for me. I couldn’t stop myself. But there was something like, “I need to do this, and then I can stop because I’ve seen what it might be, and then I hope it’ll never happen, rather than pretending I’ll be fine.”
Because everyone says you’ll be fine. It’s not going to come back. You’re the one who’s cured. And I’m like, you can’t promise me that because I know.
What I tell newly-diagnosed breast cancer patients
I think the first thing I say is. “It’s not your fault,” because there’s lots of information out there: you did this, you drank, you smoked, you did this.
And, “It’s going to change every single aspect of your life physically, mentally, emotionally, spiritually. Your sex life. Your relationships. Friends are going to come. Friends are going to go. Nothing can prepare you for what is going to happen.”
And, “There are no rules. All you can do is get through it the only way you can.”
Finding reliable information and a cancer “tribe”
I would tell anyone to try to find sensible sources of information from places you can trust, because there’s a lot of nonsense out there, and people will ask you, “What can we do to help?” And you won’t know because you’ve never had this before. And that’s reaching out to people, finding other women or men going through it at the same time, learning what’s normal.
The crazy thoughts in your head are actually normal, and your mum won’t understand them, but those other people will. And that’s why it’s important to find a tribe of people you can have those difficult conversations with. So when you go back to your family, you don’t get as upset when they say you’ll be fine or, you know, you might not die.
But it’s really hard because my mum had bone cancer, she had her arm amputated, and I didn’t know how to talk to her. But her cancer situation is very, very different. And I think people don’t know what to say because they’re not trained, and they say the wrong thing. We say stupid things, and we back off. And it’s kind of thinking that the fact that they’re saying something is good. Don’t get angry that they’ve said something to upset you. The fact that they are still staying in touch is really, really good.
I mean, what do you say? I’m having chemo. Oh my God, are you going to die? Will you lose your hair? I don’t know what to say. My friend had that, and she died. And it’s just… You don’t know. So I always used to say, “Just reach out to people and say, I’m thinking of you.”
You don’t need to reply, because often we’re knackered and we don’t have the energy just to type a text, and then you get really upset. Why haven’t they replied? I know they’ve been on WhatsApp, and I’ve seen they’ve read it. It’s just, be guided by the person with cancer, if you’re listening.
The impact of my cancer on my husband
I wanted to protect him. I didn’t want him to know what I know because hopefully it wouldn’t happen. He’s a surgeon. He was my boss, now I am. And he was like most parents, husbands, and partners are: “I want you to be fine. You are going to be fine because I cannot imagine the worst.” And I was like, I’ll be telling you in a week, it’s cancer. “No, you won’t.” “Yes, I will.” This is my world. And you just have to trust me.
It’s really, really hard, because they’re really, really hoping it’s not. And I think it was hard for him when I was going through chemotherapy. I remember him saying he felt impotent because he couldn’t make me better. He had to leave and watch me cope at home alone. And as a doctor, when you can’t make someone better, and as someone you love, you can’t make them better.
And it’s all about me. I had cards and flowers and people visiting, and no one said anything to my husband. I felt that really acutely.
He’s part of it. We’re a couple. It’s just as hard for us. And I was asking my mum, “Can you send my husband a card?” I said to his friends, “Can you take him out so he’s got somewhere to go, because he’s in it with me?”
It’s really hard to have those conversations that I might die. This could kill me. I might not be here in a few years, and we need to admit that and move on between us. And that can be really hard to do.
Why triple assessment of breast lumps matters
It’s really hard. So I had expert hands. I’m a consultant breast surgeon. I’ve been feeling breasts for ten years, and I didn’t realize I had cancer.
Any lump has to be assessed in three ways. You have an experienced person’s hands, but you can have off days. We have imaging with a mammogram or an ultrasound, and then we have a biopsy. And all three have to agree that it’s a cancer or it’s not. That’s why we have this triple assessment, because one by itself isn’t enough. Because cancers can feel like harmless lumps as well as feel like cancers. Most lumps in young women aren’t cancer, but we know it’s on the rise in the 20, 30 and 40-year-olds.
My mixed ductal and lobular breast cancer
Most harmless lumps are smooth and round like marbles, and cancers are generally knobbly. But mine? I had a mixed cancer of ductal tissue and lobular tissue, and the ductal tissue was quite smooth and round, and that was actually about 5.5cm. But I also had lobular cancer, which grows in sheets throughout the breast rather than as a lump. So it had kind of infiltrated the whole of my breast. And there was actually 13cm of lobular cancer still left after chemo at the mastectomy.
My dense breast just became denser, and I couldn’t tell. But I think it’s like most of my women said, “I only found the lump last week.” I think, why didn’t you see it earlier? And it’s a bit like when people are pregnant, that suddenly the bump appears overnight. The cancer has just suddenly grown big enough to see or big enough to feel, because it can take ten years for it to grow.
But the answer is, your hands can’t tell you anything. Your hands can say there’s a change. You need to have the other tests to find out what it is.
How to perform a breast self-exam effectively
I think a lot of us learn from videos on social media, and that’s fine if you are very small-breasted and you can’t hold a pencil underneath. But most women aren’t like that.
I think the first thing you need to do is to look in a mirror. Lift your breasts. You’re looking for changes, and you lift your hands above your head. And you put your hands on your shoulders. What that does is cause dimples to form when the muscles tense. That’s another way of seeing if you have breast cancer early.
When you examine them, and those videos tell you to do this, you feel with the flat of your four fingers, you bend at the knuckles, and you are squishing your breast tissue against your rib cage, trying to feel a lump underneath. Now, if you’ve got really small breasts, you can do that standing up in the shower; it doesn’t matter. But if you’ve got breasts that droop — and I hate the word droop, I used to say “heading south for winter” — if they double over and you feel it standing up, you are actually feeling two thicknesses of breast tissue where it’s folded over and gone back, and you’re going to miss things on the other side. So that’s where we say to lie flat, ideally on a bed with a couple of pillows or in the bath.
And what that does is lift the breast onto your chest wall. If your breasts head off to the side, you can roll towards the middle, and that will bring them onto the chest. And you may need to use one hand to hold your breast there, but having them flat so you can feel all the breast tissue. And the breast tissue starts at your armpit, and it’s like a teardrop that goes around.
The final thing people say is to check your armpits. Now, I can often not feel lymph nodes when they’re seen on an ultrasound scan. They’re really, really hard to feel. But what you don’t do is have your hand up in the air and feel your arm. Your armpit needs to be really, really relaxed when you do it. If you’re going to do it, it’s just making sure you know what you’re feeling, and you know how you’re doing. And you do it every month because breast cancers can appear week to week.
You’re pushing the breast tissue against your rib cage, trying to find something underneath your fingers, a bit like feeling a carrot underneath some dough. Oh, there’s something hard there that shouldn’t be there. It’s that kind of feeling. So you are pressing quite firmly.
What to do if you find a breast change
The first thing I say is to check the other side because it may be the same. Your breasts are hardest and lumpy in the bit heading up towards your armpit. We kind of call it the upper outer part of the breast and the tail going up towards your armpit. You’re often very lumpy there. If you feel something and it’s different, I want you to wait for two weeks. I want you to make a note in your diary, because often your breasts can change with your menstrual cycle.
If you’re still having periods, you should ideally check in the middle of your cycle when your breasts are less hormonal. Everyone says the first of the month, but that could be the worst time for you. And you just make a note in your diary, and then you set an alarm to feel it again in a couple of weeks. Otherwise, you’re checking every day, and you’re pushing your breasts, and it gets sore, and then you think it’s bigger.
So I’ve noticed it. I’m going to try to ignore it for another seven to ten days. If it’s still there and it’s not gone away, then you go and see your family doctor, and you say, “I found a change in my breast. I think I have breast cancer.” And then that doctor knows what you are worried about, and they can then answer your questions or concerns when you see them.
Advocating for yourself when doctors dismiss concerns
It’s really, really hard because we know it is happening in 20-year-olds. Breast cancer is on the rise. And I think you say, “If you can’t prove that this is not breast cancer, I want to be seen by someone who can,” and most doctors can’t, and it’s hard. But generally, doctors will refer anyone up to the breast clinic. And most of the people we see in our breast clinic do not have breast cancer. Ninety-five percent of the women we see are okay, but the only way to prove it is with an exam, imaging, and a biopsy.
So you just go, “If you can’t prove it’s not cancer, then I don’t believe you. I need to be sent up.” It’s being really firm because this is your life and cancers are missed. It is okay to advocate for yourself and actually write that sentence down: I think I have breast cancer, I want to prove that it’s not. I’m not going until you refer me.
Understanding dense breasts and mammograms
Your breasts are made up of the breast tissue that produces milk, the hormonal tissue, and fat. In your 20s, your breasts are predominantly hormonal because your body still thinks you’re going to have children. When you reach the menopause, most women’s breasts turn to fat, so you don’t have a lot of hormonal tissue. They’re mainly fatty.
So young women have dense breasts. Some women have dense breasts throughout their life, but generally around 40 or 50, they start to get a bit less dense. Now, this is a reason why we don’t mammogram women regularly in their 20s, 30s, and 40s, because mammograms work by picking up white cancer on a black background. Now fat looks black. Cancer looks white, but dense breast tissue looks white as well. So on a normal mammogram of a dense breast, there might be a cancer there that they can’t see, and there’s no other imaging. We know that dense breasts slightly increase your risk of getting breast cancer in the future. We don’t know exactly why it happens, but that’s a fact.
There are things you can do to reduce your risk of getting breast cancer. You can’t stop your breasts from being dense. That’s just how you were made. And if you go on HRT, that can increase the density of your breasts. But exercising regularly, aerobic and strength work, not drinking alcohol, and trying to keep your weight at a healthy range can all greatly reduce your risk of getting breast cancer, so it’s useful to know. It means that you really need to keep checking your breasts between mammograms. Do what you can to reduce the risk, but you can’t change it.
Deciding between reconstruction and going flat
I had chemotherapy first to try to shrink it down, to try to get away with a mastectomy. But also because I was young, there was a high risk of it coming back in the future. So I kind of had five months to decide whether to have a mastectomy and go flat or have a breast reconstruction. And I struggled with this because I do breast reconstructions. What will my patients think if I don’t have one myself?
But a lot of it was vanity. I used to wear V-neck dresses at work, and if you wear a bra with a prosthesis, they’re full cup. It would show. But I struggle with the idea that vanity was the reason for having the op. Yet that’s one of the reasons that I love being able to reconstruct breasts.
Radiotherapy, implant problems, and local recurrence
I had the reconstruction with an implant, and sadly, when I got the results of my surgery, my chemotherapy had made my cancer disappear completely. There was nothing left, except for 13cm hiding. It had spread to my lymph nodes, so I needed radiotherapy.
What that did was start to form a hard capsule around my implant, and I knew it might happen. And that led to a lot of chronic pain. It meant more auxiliary surgery. And eventually, I was planning to go flat, to have it removed because I was in so much pain, but I had a nodule of scar tissue on my chest wall. This was a couple of years after my first diagnosis, and that scar tissue was a local recurrence. It was 2.5cm of cancer on my chest wall, and that was two and a half years after being treated.
And suddenly I’m going flat because my cancer has come back, and I wasn’t prepared. And I was walking around shops crying, thinking, “What am I going to wear? How do I cope?” And that fear of stage 4 disease being even more prominent now, that was really, really hard.
Facing major surgery and the loss of control as as surgeon learns to be a patient
I’ve consented to people for operations all my life. But when you are the one signing that form, agreeing to have a general anesthetic with a risk of heart and kidney problems and the risk of death, it’s very different. And when you are being wheeled down in your paper knickers and your gown, when you don’t have any hair, and you’ve not got your glasses on, it’s scary.
That loss of control, what’s going to happen? Am I going to be okay? And I think the fear of starting tamoxifen and how bad the menopausal side effects will be. And I knew too much. I knew all the bad things. It’s like TripAdvisor. And it was really, really hard just letting go and being a patient and doing what I’m told.
I think my surgeon told me to stop telling her what to do. I wanted to tell her what stitches to use and where to put the drain, and she said, “Stop it.”
I realized I know everything there is about how to treat breast cancer, but I have never been a patient before, and I bought 20 books. It’s why I wrote my own, because there was so much misinformation out there, and I had to learn to be patient and realize I don’t know how to cope with chemotherapy side effects, and I don’t know what to do after a mastectomy. And it was a massive, massive learning curve to realize that the hardest part for patients is when your doctor says, “Goodbye, I’ll see you in a year,” and you’re left alone to live your life. And is my cough a cough, or do I need to see somebody? And what do I eat, and do I need to exercise? And how do you get your relationships back? And what do you wear? And the mental side of it. And it’s like this huge gap between what the doctors have the time to tell you and then what you need when you live the rest of your life.
Breast cancer’s impact on femininity and body image
I describe it like this. Breast cancer took everything from me that you might give someone who’s transitioning. But it took more.
It took my hair, including the eyelashes and eyebrows. My face just looked like an alien. It took my breasts. It took the erogenous zone away. It took my ovaries away. It took my fertility away. I’d never had a child. It took my sex drive away. It took my libido away. It took away my ability to wear sexy clothes and a bra. Everything that makes me feel feminine was gone overnight, and we don’t really think about what our breasts mean to us unless they’ve got cancer. And then you can’t think rationally because they’ve got cancer. And it’s like, do I need it? Do I not? Do I miss it? Does it define me now?
Five years later, when I’d gone flat, I actually didn’t care. I was happy being flat because I’d gotten used to it, but I wouldn’t let my husband see me naked for five months because I hated the flat scar. And it’s like, “How do you learn to dress and how do you flirt when you can’t tuck your hair behind your ears and you don’t have eyelashes?”
And I just think it’s the whole thing. It’s not just a scar, it’s how it impacts you as a woman. And I was kind of fighting with that. And part of me says, “I don’t care anymore. I’m just going to live in hoodies for the rest of my life and become a hermit.” And then, I thought, “No, I’m 40. I want to feel pretty and attractive.”
Just dealing with all of that emotion on top of the fact that I’ve got a really big cancer and I might not be here in three years, and you want to make the right decision, and there is no right decision. There’s only the right decision for you at that moment. But you still want to please people.
Owning treatment decisions
I’d say to never decide on your health because of what someone else tells you. I see a lot of women whose husbands want them to do this, or their parents want them to do this. And I say, “You leave the room, I’ll just talk to the patient.”
It is your choice. It is your body. You have to live with the side effects if they happen and the consequences. And you can deal with the husband not being happy because you haven’t done A or B, but it is your choice and your body, and you do have time because breast cancer isn’t an emergency. You can have a couple of months to make those decisions, but it is your body.
Choosing treatment that fits your life
It is your choice. What you want now may be very different from what you want 2 or 3 years down the line, but you don’t know that yet. All you can do is kind of trust your gut. But removing the cancer is one thing; you have to think about how it affects your lifestyle.
Do you want to get back to work tomorrow, or do you want to have six months recovering from a massive operation? What commitments do you have? How is this going to fit in with your life? You may not be able to have the operation you want because you smoked and you drank, and your skin is really bad. It’s really, really hard. But you choose for yourself. Only you.
How breast cancer affects sex and intimacy
I started talking about sexual health during COVID because I was getting so many questions. I started blogging during my diagnosis to make it real. And people started listening, doctors, students, and the general public. And that led me to write and grow a community online where I just answer people’s questions.
The biggest thing is how to cope with a lack of intimacy. And for most people with breast cancer who have cancers that are sensitive to estrogen, we give you treatments so you don’t make any. Now it’s overnight, rather than the slow five to six years. It means a drop in your libido, a drop in your sex drive. It also means that your vagina is less lubricated, so it’s dry and it’s painful, and penetrative sex can be very, very sore.
And I’ve had women say, “I told my husband to divorce me, go and find a woman with two breasts who wants to have sex because I don’t. I literally just want a cup of tea.”
I don’t get turned on physically anymore. I have no estrogen. I’ve had two recurrences, so I’m on treatment. And that’s really hard to explain to someone. If you’re newly married, you’re in a new relationship, you’re single, and you’re dating. I don’t work as I did before; no one talks about it.
But it’s not just the penetrative side of sex. It’s how you feel about your body. Do you want to be touched? It can make you really, really nervous. And we don’t talk about it. We don’t talk about it with our doctors.
It comes down to communication between you and your partner and working out how you find the way. And it’s almost going back to dating again, where you just start holding hands and kissing on the sofa, and that’s it for tonight, and just finding other ways to be intimate. And there are ways that you can go back to penetrative sex, but it involves lubricants. And yes, vaginal estrogen is safe. And some great dilators and vibrators can help, but it may never be spontaneous again.
Realizing that illness changes intimate life
That is a massive change in a relationship if that’s a really important part, that’s the glue that keeps you together. And I had no idea. I never talked about this with my patients, and it was only when I went back, having had it, that I would start those discussions, because I think any illness, any operation you’ve had, will affect your intimate life.
Even an appendicectomy with a little scar on someone’s tummy, they may think, I don’t want to show that. What do you do if you’ve had bowel cancer and you have a stoma? How do you have sex then? And it just never crossed my mind as a surgeon.
I assumed people knew what to eat, and I assumed people knew what the side effects of a recurrence were. The big thing for me was the impact of cancer on mental health. I had no idea that depression, anxiety, and post-traumatic stress disorder were common and could happen years after the diagnosis.
Scanxiety and the mental health toll of cancer
Scanxiety, if you don’t know what that is, that’s the awful, gut-wrenching feeling that you get when you have a scan coming up, or you’ve found something, and you’re awaiting a scan, or you’re awaiting the results. Some people can’t sleep, feel sick, can’t concentrate, and are wrecks. I have learned to tell my husband I am going to be an irritable, moody cow until I get the results.
There’s nothing he can say to make me feel better because he doesn’t know the answer. So just deal with it, and I’ll be lovely when I know.
But it’s not just that. It’s almost getting good news can be an anti-climax because I spent three weeks imagining the worst. It’s going to say it’s come back. It’s going to say I’m incurable when it’s not. It’s like, I’m going to have to go through this again at some point in the future. I can’t do it. I had no idea just how bad that would be. Isn’t it? Everybody feels it. It’s just horrible.
Talking about death, wills, and recurrence
And the fact that we’re all going to die. We didn’t do our wills until my cancer came back the first time. I had to get my husband to admit that I might die before him. We’re adults. We are all going to die. We don’t talk about it. Now, it’s terrifying.
If you’re young and your cancer comes back and you’ve got young children, it’s really, really, really hard. But we should all have wills. We should all talk about what we want. And actually doing that and saying, “This is how I want my funeral to be,” I could then put it to bed because we’d had that discussion.
We need to talk to people because most patients don’t realize their cancer can come back. They think they’re cured. They don’t know what to do. But it’s hard as a conversation to have as a doctor.
When do you tell someone, great results, it’s all out, you look fantastic. By the way, in ten years, if you get a headache, it could be this. It’s really hard. And it’s that, it’s talking about the sensible adult stuff that just makes sense.
Practical planning and “death boxes”
So it took me three years because that’s how long it was when my cancer came back the first time. The second time was a couple of years ago. And it was more of, “We need to be open and honest, and I need you to admit that my cancer might come back, and none of us wants it to happen. But I need to know that you admit that.” And I’d had enough. I had that conversation.
But I think you could say, “Look, we’re adults. We should get our wills sorted. We should know what’s going to happen, you know?” Do you know my Instagram password? And do you know how to work the washing machine? And where have you hidden the spare keys to the car? And the practical little things. It’s almost like a death box, you know, and just, we should just get this done because it’s sensible. No one knows what’s going to happen in the future, but it would give me peace of mind. And there are great tools now where you can go and actually plan your funeral. Because when my mum and dad died, mum didn’t talk about it.
She said she thought she knew when her cancer would come back, and it happened before she had time to talk. When you’re trying to imagine a funeral for someone you love with no idea, it’s really hard. But there are websites now where you can plan your funeral. Because my husband will have no idea which of my friends to invite from my phone book. You know, “God, don’t invite those particular folks; I should have deleted them years ago.” You can say, “These are the people I want, and these are the songs I want, and I want everyone to wear pink or for them to sing this.” You can actually do that and send an email to somebody. Just common practical things that we should do, whether we have cancer or not.
Key warning signs of breast cancer
So there are, depending on how you count them, between 7 and 12 signs of breast cancer. The first thing you do is look in the mirror. So, a change in the nipple. You can get bleeding from the nipple. Now, you may only see that when you get out of bed, and you can see blood on your bra or your nightshirt. That can be a sign of cancer in the nipple. Some women’s nipples can go in and out. Some people are born with one nipple that is in. But if your nipple has gone in and you cannot pull it out, that could be breast cancer. You may see a lump.
I talked about dimples earlier. So your breast tissue has strands of connective tissue, a bit like string, that go from your chest wall muscles through to the skin. And if there’s cancer in there, what it can do is just tighten those strings. But you can’t see that when your breasts are naturally sitting there. By putting your hands in the air or putting them on your waist and pushing in, you are stretching the strings. And if it’s a cancer, it causes a dimple, a very small dimple or dent. And that could be the earliest sign of breast cancer. So it’s important to look.
You may see a rash. Now, the breasts can look very red, and that’s a bit like mastitis. That’s an inflammation that can happen during pregnancy and breastfeeding. It’s also a very common sign of inflammatory breast cancer. If you have a rash and it’s not getting better with antibiotics, that could be cancer. Some breast cancers can cause a change in breast size and shape. Now, it’s normal for some women to go up a cup size. And your sisters are… your breasts are sisters, not twins. So you may normally be different sizes, but if one suddenly gets bigger, that should be checked out. So by looking in the mirror, you can get an awful lot of information. And I should say breast pain by itself is very, very, very rarely a sign of breast cancer.
If there are other symptoms as well, then it can be part of it. But on its own, 99% of women do not need to worry. And that’s why I say make a note, come back in two weeks. If it’s still there, and you’re still worried, get it checked out.
Living with ongoing treatment and survivor’s guilt
It’s really hard. So I am coming up to three years since my second local recurrence, so I’m technically cancer-free. And that was just a little spot on my mastectomy scar I saw coming out of the shower one day. I’m on treatment for life to try to stop me getting metastatic disease. And that means two big needles in each of my bum cheeks every month for life. It’s not fun, but at the moment it’s doing its thing.
I spend a lot of my time in Doctor Liz mode with my community. When I’m writing my fifth book at the minute, the podcast, I’m answering their questions. I’m in doctor mode, and I’m trying to keep that barrier up because it’s a privilege that people share their stories, and some of them are heartbreaking. And I hear stories, I have friends whose cancer comes back, friends whose cancer takes their life. And there’s survivor’s guilt, which we can talk about, where you wish it was you who was dying and not them. But that’s really hard. And there are moments when it gets me, and I have a small group of friends who I can just be Liz the patient with and say, “I’m really scared, I’m worried.” And they ground me, and they say, “Right, go and see the doctor. Come on now.” Yes. Okay, I’ll go and get a scan.
Compartmentalizing, triggers, and stepping back from social media
Most of the time in the beginning, I’d think about my cancer coming back every day, and I think it took 5 or 6 years before that stopped. And I try to ground myself. I’m a bit sad, I’ve just bought a spinning wheel. I like to knit. I like to swim in cold water, things that kind of ground me. But it’s trying to compartmentalize and say, this is my job, I’m helping people, I’m being a doctor, but knowing when I need to retreat.
And in October, I’ll often switch off the internet. In October, I’ll often switch off social media because it’s everywhere. I’m very aware of breast cancer. I don’t need to know about it. I just need to be a patient and hide. And it’s saying it’s okay if you are triggered by what you’re seeing online. You don’t need to post. You don’t owe anybody anything. Because there are people out there making a living from cancer, and they need to post, and we need to share the innermost aspects. You don’t owe anybody anything. You can switch off and leave it alone if that’s what’s right for you and your mental health at the moment.
Finding a flirty, funny voice to debunk “nutri-bollocks”
As a surgeon, I wrote academic papers; they were very serious. I got funny and flirty when I was drinking at night, but that wasn’t me. But I’ve kind of had to grow. I grew my Instagram community so I could crowdfund my second book, and I’ve discovered how to do the videos. And I love being creative and explaining stuff using oranges and lemons.
And it’s fun. I’ve learned when it comes to debunking BS online that the rage-bait doesn’t work. When you get angry, it creates the wrong views, and it’s almost debunking and finding a way to do it without blaming anybody. But it’s fun.
Why people turn to alternative “cures”
I think when you get cancer, you are frightened. And your doctor, your mainstream traditional doctor, cannot promise you a cure. The only way to promise you a cure is if you die of something else. And you want control. You want certainty. You want hope. And doctors like me have to tell you the good, the bad, and the ugly. We have to tell you all the side effects, what might happen, what could happen. That’s part of informed consent. But you don’t want to hear that. You want to hear hope. You want to hear stories of things that have worked, promises of a cure. And this industry has grown of people who are coaching and talking and selling and saying, hey, and there are new branches of medicine.
It’s like, oh, they said they cured someone who had what I had, and they said this might do it, then they said that might do it, and the things your doctors aren’t telling you. And the more you look at that, the more you see. So it must be true because that’s all you’re seeing, and it’s just feeding into this fear. I will do anything I can to stay alive. And I remember when I was first diagnosed, my mum said — she’s a nurse — if someone on Facebook said they could cure you with a thing that costs 50 grand, I’d find the money. But when she got bone cancer and had her arm amputated, and she was told by people, she said, “They’re all idiots, I now know it doesn’t work. But I was a desperate mother who didn’t want my daughter to die.”
So you can get the pressure from family and friends, and it becomes all-encompassing. And I don’t judge anybody for believing what they see because I’m not in their situation. What I want to do is just help them research and take a bit more time over what they do, because you wouldn’t buy a car or a house like that.
How to check if a “doctor” or cancer claim is legit
Okay. So I think the first thing to do is if someone says they’re a doctor, find out what kind of doctor they are, because you’ve got medical doctors, you’ve got PhDs — which actually I have — but they can have a PhD in pharmacy. But that doesn’t mean they’re a medical doctor, and you can get doctors of chiropractic and osteopathy. So, actually find out if they are a doctor. But not just that, what is their specialty? Because they could be a doctor of respiratory medicine or pulmonology. They’ve got no expertise in cancer.
But the problem is with ChatGPT and Claude, anyone can find anything and assume they know the details. But actually, do they have any training in cancer? That’s really important. When a video says they can cure cancer, you need to stop and think because there are over 200 different types of cancer. There are over 50 potential varieties of breast cancer. You do not get one oncologist who treats every cancer. They specialize. You’ve got lung cancer oncologists and bowel cancer oncologists. One drug cannot cure them all.
If they say it’s the one thing your doctors are hiding from you, do you really think doctors don’t want to cure cancer? If it worked, we would give it to you. We would demand that you have it. It’s not to do with money. It’s not to do with pharma hiding it from you. That is another red flag. If it sounds too good to be true, and if they are making money off you. I think that’s a big reason — as I know in the States — that you have to pay for your healthcare, but it comes through the hospital.
But if someone outside is making money from you, and you’ll often find there’s a medical disclaimer at the back, “I can’t give medical advice.” That’s their get-out-of-jail card. That’s not true. And the final thing, they’ll often say there’s research to show that matcha tea kills breast cancer cells. Start drinking it. Where did that data come from? You ask them, challenge them in the comments. It often comes from cells in a lab or mice and rat studies. That is not the same as humans. And often these studies, what they’re doing is pouring a massive dose of matcha tea on cells in a lab. For you to get that dose, you’d need to drink 135 cups. It’s not equivalent, but they’re cherry-picking studies to sell stuff.
So just bear all of that in mind. And finally — this is the third final — can you replicate what they’re saying on an independent website like the American Cancer Society, like CRUK? Can you find it on two separate independent websites that will say, yes, matcha cures cancer? If you can’t, it’s probably not worth it. But, sorry, the power of the testimonial is now the strongest form of evidence we have. As a doctor, we rely on trials where we test one thing against the current gold standard. Is it better? Does it work? We assume it’s not going to work. That’s how we do trials. But people don’t care about those. They want to hear about Fred, who took ivermectin and fenbendazole and methylene blue, and now he’s cured.
Well, Fred’s only cured if he doesn’t die of cancer. And how long after taking those pills did he take it? And was he paid to take it? And actually, did he have surgery and chemotherapy as well? People can say anything. There are deep fakes now. There are fake websites on Facebook of me selling these drugs. You can’t trust anything, but testimonials prey on our emotions. It’s why we buy face cream from an ad because you want to look like a supermodel, you know, and they know what emotions to pull. And you just have to stop and just be a bit logical if you can.
Debunking myths about sugar, dairy, soy, and “cancer diets”
So sugar is the big one. “Sugar feeds cancer, so cut sugar out of your diet to cure cancer.” And it’s based on misinterpretation of evidence from the 1920s. And cancer cells are actually really clever. So I’m going to try and explain this for you. Most cells in the body, when there’s oxygen around, use sugar molecules to make fuel. Some cancer cells make it without oxygen. That’s like when you’re running at the end of a sprint and you can’t breathe, and you feel that lactic acid making you burn.
What they do is they need a lot more sugar to get their fuel. You think, “Well, why are cancer cells doing that? Surely the sugar is making them grow. They need more sugar, therefore we should cut it out of the diet.” The cancer cells are doing that because when they make energy without oxygen, they get more building blocks like Lego because they are growing, they need more scaffolding to grow. And the lactic acid creates an environment outside the cancer cell that pushes your immune cells away. So it’s really clever. It’s the cancer cell doing it, not the sugar. And every cell in your body uses sugar for food — your brain, your heart, your lungs. And sugar is not just donuts and cookies and crisps. It’s carrots and vegetables and fruits and nuts and seeds. Every carb is broken down to sugar, so it’s nonsense.
But there’s a lone 70-year-old oncologist who is going on podcasts all around the world saying that this is true. It’s not. And if you do the diet he says, which is keto, very, very high protein, very high fat, you’re not getting the fibre you need for your microbiome. You’re not getting half the nutrients you need. It’s dangerous. People lose weight, they die of starvation. So it’s not true.
Dairy — the big thing saying that dairy causes breast cancer — was from a woman who’d actually had tamoxifen, but she didn’t say that in her book. She said she cut dairy to beat the breast cancer. It’s completely safe. They worry about the hormone levels in the milk, but the hormone levels are actually really, really small compared to the normal estrogen you make.
Soy is another good one. People worry about soy because soy has a chemical called a phytoestrogen. The estrogen sounds scary and estrogen causes breast cancer, but it doesn’t. Estrogen can fuel breast cancer cells; it doesn’t cause it. And the amount of estrogen you get from soy is microscopic, it’s tiny. Soy foods — edamame, tofu, tempeh — are all completely safe. It can actually lower your risk of breast cancer. But soy supplements you shouldn’t take because we don’t know what the strength is in them.
Eating after cancer: The 80–20–1 rule
When I finished chemo, I was going to juice and go green and go vegan and be really healthy, but I was just glad to enjoy cake again. And chocolate. There’s no miracle diet. We want something that’s easy, but the only place to go for research is the World Cancer Research Fund that have looked at all the evidence over the last 10–20 years. The only diet you should follow is the one we should all be following, whether we have cancer or not. It’s a Mediterranean diet. Half a plate of fruit and veg, good protein source, lots of colours of fruit and veg — and that can be onion, carrots and peas.
It doesn’t need to be expensive. Limit fast food, limit alcohol. But I have a framework that I use in my last book, The Cancer Roadmap. Am I allowed to swear with Saint Patrick’s Day? I’ll do the three F’s. So if you want to eat fresh food that you cook yourself, it costs a lot of time, energy and money. It’s much cheaper to buy a ready meal, especially if you’re a single mum looking after kids. So I kind of say 80% of your diet should be the fuel. It should be the good, healthy stuff that you all know you should be having. Twenty percent should be fun because you’ve had cancer. So go and have a glass of wine, have the cake, go out for a meal with a friend, go and live it up for two weeks on holiday. As long as it’s not every week of your life, it’s fine. We have to enjoy ourselves. It’s not going to do anything to you.
And the 1%—and I know the maths doesn’t add up—is the f*** it, when you just need to eat a packet of chocolate biscuits because you have an emotional hole that needs filling. It’s fine. It’s not going to make your cancer come back. It’s really, really not. And I think it’s just being sensible.
The dangers of extreme alternative diets
But we want that cure. The problem is there was a case in the UK of a 23-year-old girl who had Hodgkin’s lymphoma in her chest, and her mother was a conspiracy theorist and persuaded her to juice — to drink 13 pounds of fresh vegetable juices a day — and she died weighing 30–35kg because the cancer kept growing. But people believe it, and you don’t see the horror stories. You don’t see the stories of the families of people who went to the clinics in Mexico who died. And I know 50 grand is much cheaper than what chemo can cost in the States. But you don’t see the stories when it didn’t work. They don’t reach the media, but they are there.
Mainstream, functional, and integrative medicine
So I’ll start with the different breeds of medicine, if you like. So mainstream is what I practice, what most doctors in hospitals practice. Functional medicine is the medicine that people like Mark Hyman practice. It was actually invented by a businessman in the 1990s who wanted to sell supplements. And it believes that our body gets healthy because we have terrains, like what you eat and how you feel and your negative emotions and your stress, and you have to repair all of those. And it’s your fault that your cancer came back. And they tend to do 500 blood tests looking at heavy metals and parasites and all this kind of thing. And it’s not based on medical science. Integrative medicine is like a blend of mainstream medicine and lifestyle medicine with a little bit of functional nonsense.
They say that doctors like me don’t care about what you eat and how you sleep, but we do. They’re just trying to make us look bad. And a lot of what they practice isn’t good.
How different non-mainstream approaches to cancer care work
There are some good doctors, but not everybody is. You’ve got naturopathic medicine, which is based on folklore and superstition, again very similar to functional medicine. It’s your fault that you got sick because your roots weren’t healthy, and let me help you cure them. They are very convincing because they are selling their businesses online to get people to come, to make money, which is why they say that they care about you. But it’s not the same as traditional mainstream medicine. Complementary medicine is things that you can do to make yourself feel better, to help with the side effects — things like tai chi, yoga, acupuncture, aromatherapy, hypnotherapy, all these things that can help you heal, can help you cope with what you’re going through. They work with medicine. We recommend them. They are great. I had a lot during chemo. Alternative medicine is anything that a doctor wouldn’t recommend that you have instead of mainstream treatment, or that can work against it. And there’s a massive, massive list, things like vitamin C and mushrooms and electromagnetic mats and the juicing and the colonic enemas and the crazy diets. It doesn’t work. There is no proof that it works. And there was a study that came out a couple of years ago that showed people who only use alternative medicine are twice as likely to die from their cancer.
For breast, bowel and lung, they were 5 or 6 times more likely to die if they chose alternative medicine. And these were women who were educated with money making these decisions. And another problem is people are taking a lot of these alternative medicines, the supplements, but they can interact with the drugs that you’re taking, and they don’t tell the doctors and they could be doing more harm than good. And most of what you take ends up in the toilet. The high-dose vitamin C drips — your body only needs a tiny amount. You’re basically feeling better because you’ve had a litre of fluid and you’ve given someone $300.
Why doctors need to “pre-bunk” misinformation
I think doctors need to realize that this is out there. As a doctor, I had no idea what information my breast cancer patients were getting online because I’m not a patient, and I wasn’t interested. And I think raising awareness that many people are promoting alternative cures, clinics, and diets that do more harm than good. So I think it’s important to let them know. I think the way to go about targeting it is what I call pre-bunking, by telling people ahead of time, “Look, there is no magic cancer diet. This is what you need to eat.” Supplements may help with side effects, but they’re not going to cure you.
And then they need to be digitally signposted to the sensible websites that can answer all their questions, because patients are going there. And one of the problems with things like Claude and ChatGPT is there’s so much information about these alternative cures that medical doctors aren’t saying anything, so they think it’s right, and they think it’s real. The problem is that doctors are working a full-time job. It takes a lot of time and hours to create this kind of content, and they don’t depend on it because people come in, they may have some private practice, but when you’ve got all these other people who are making millions off vulnerable cancer patients, they do the PR, they do the marketing because their job depends on it.
We can’t tackle that. And I wonder whether we need — and we are trying — to get a group of doctors together just to go out there and try and get into the communities and say, “Hey, this is real.” But when I say, “Don’t take medicinal mushrooms, and do exercise,” it’s boring, it’s not sexy. There is no money in advertising common sense, and people don’t want to listen because it sounds like hard work. And I think we need to start the education at a younger level to talk about cancer and health, and how to interpret what you see online. But it’s really, really hard. There are women dying today who do what someone on Instagram said.
Parasites, parabens, and other persistent myths
Oh, there’s a couple. So bras, underwire bras, do not cause breast cancer. They are completely safe. But the two doing the rounds at the minute are parasites and parabens.
So suddenly, parasite cleanses are everywhere. Everyone in the Western world is infested with parasites. And I got an email from a breast surgeon today — I’m on her mailing list for research — who said parasites can actually attach to you spiritually and drain your energy and make you fatigued, and you should do a parasite cleanse. And that’s why they believe that ivermectin and fenbendazole, parasite drugs, can cure cancer, can cure all your symptoms. And it’s nonsense. Yes, parasites cause cancer, but that’s if you live in certain parts of Asia and you drink water infested with liver fluke, and that’s 2 or 3 or 4 years of that. They don’t cause cancer here. We don’t have parasite infestations. We don’t need to take ivermectin. But they’re clever, because what they’re basically doing is stripping your gut, and then they sell you the probiotics to put the bacteria back.
And it wasn’t helped by things like this. Joe Rogan interviewed Mel Gibson, who said three of his friends cured themselves of stage 4 cancer by taking ivermectin, fenbendazole, and methylene blue. Vets can’t get hold of fenbendazole, it’s a dog de-wormer, because people are taking it, but it’s not absorbed in the bloodstream. It’s just… It’s really, really hard.
The next one is parabens. People are telling you that you should get rid of anything in your house that has this chemical in it. So you should only have clean cosmetics, moisturizers, toiletries, and deodorant and perfume, don’t use anything. And there are two or three aisles in Sephora now — these are the clean cosmetics. It’s nonsense. It started from research where someone observed that breast cancer cells have a high level of parabens in them. Therefore, parabens cause cancer.
A paraben is a preservative. It stops fungi and bacteria from growing in your moisturizer, your toothpaste, and your shampoo. It’s really important. And it can act like estrogen, but when you put moisturizer on your face, you only absorb 1% of the parabens, and that 1% is 1000 times less strong than the estrogen in the oral contraceptive pill. And the pill doesn’t really increase your risk of cancer. So the impact is tiny, but people hear paraben, phytoestrogen, dangerous, and they are making millions with these clean cosmetics, scaring people.
You can put what you like on your face, buy clean cosmetics if you want, but it’s not going to cause cancer. And the alternatives to parabens only stop fungi growing; they don’t stop bacteria. So there’s a shorter shelf life, so you have to throw your moisturizer out every three months because your hands are completely clean when you dip in. It’s crazy.
How clever marketing exploits fear
It’s really clever marketing, you know. I’m a bit of a geek. When I went deep into the research —okay, what is the effect, what is the strength, do they actually work, why do I need them? — I found that they don’t work. Yeah. It takes time.
People can be very persuasive. They can say anything. And with fake AI and scripts, it’s all clever marketing aimed at getting the sale. They want you to buy something from them. It’s like, “What is in it for them? Why are they telling me this? Why are all these people telling me this?” Because they want me to buy their products. That’s what it is. Because they want the name, the influence. They want to get the money. This is what it is. Your doctor hasn’t told you this. If moisturizers caused cancer, you’d have to be over 18 to buy them. You’d need an ID as you do with cigarettes and alcohol. If deodorants caused cancer, there’d be a huge label on them saying they cause cancer, but there’s not.
But we get caught up in that moment. Oh my goodness, it’s scary. They’re preying on our emotions, and suddenly, click, you’ve thrown everything out in your cupboard, and you’ve gone to get new stuff. You can go to Google, Claude, ChatGPT, and say, “I saw a video saying that parabens cause cancer. Is it true? Find me the evidence in humans,” and something as simple as that should tell you, actually, this is the truth.
Questions to ask about claims you see online
Is this true? What do the big cancer organizations say? The wellness industry is worth four times what Big Pharma is. Trillions. It’s huge. They want to make money from us because we’re vulnerable and desperate. It’s like collagen.
Collagen is made from the abattoir byproducts of meat and fish processing. That’s what collagen powders and supplements are. And when your body breaks it down, you have no control over where it puts that collagen. It could go to your skin, it could go to your joints. But you can get collagen by eating meat, fish, dairy, and milk products, and it tastes nice, and it does the same job. There is no evidence to show that it works.
I think collagen is fairly safe. It’s just basic proteins. But you have no control over what the body does. And yes, every company has its own research to say it works. But when you get rid of those and do independent trials, there’s no real benefit. And it takes 3 to 6 months to see a benefit from collagen, if you’re going to get one. That’s three or four hundred dollars, and you’re eating chicken cartilage and boiled cowhide. Marine collagen, that’s fish scales. And vegan collagen isn’t a thing because plants don’t have collagen. You don’t see that on the boxes.
Why misinformation will persist and how to protect yourself
I don’t think misinformation will go away, sadly. I think the more followers you have, the more truthful people think you are. It takes a hell of a lot of time to do this, and when you’re not producing clickbaity viral videos, they’re not going to get there. The world of deep AI and fakes is going to get worse. And because as long as people want to make money, it’s going to continue. And I can go from looking at hedgehogs on Instagram to researching matcha tea, and suddenly the feed is following and following and following.
And I think we need to stop thinking of social media as somewhere to find a cure for your cancer. You have to learn to double-check everything because you can’t trust anything. As I said, there are two Facebook accounts of me selling worm cures for cancer. You can’t trust anything. And I think it will get worse. But by educating people, telling them to stop and think and double-check, that will help.
For me, I think there is hope in educating people so that they know what to do. They know the right thing, that doctors signpost them to good sources of information, and they learn to think for themselves.
Why I wrote my book on cancer and misinformation
That book was aimed at anyone over the age of 7 or 8, really, to be kind of the counterpart to all the myths online. I want to explain what actually causes cancer, why it happens, what doesn’t cause cancer, why it’s treated, the different branches of medicine — alternative, complementary — how to spot “nutri-bollocks” online, why cancer comes back, why we can’t cure it, and just give people that common sense understanding. So when they see something online, they can go, “Oh,” or they can send their mum or their best friend there. “Now I understand. Now I know it’s not my fault. Now I know what to do.”
It’s been really important for me because, again, there’s so much information out there. The diets. And it’s almost become like a religion and a cult. And the people who need to read my book probably won’t because they believe something different. But at least I know it’s out there.
Cancer Details: ER positive = estrogen receptor positive 1st Symptoms: Dimpling/lump found on breast Treatment: Mastectomy, AC/T chemotherapy, hysterectomy, reconstruction
LeeAnn Found Meaning in Her Adult Diffuse Intrinsic Pontine Glioma (DIPG) Brain Tumor Diagnosis
When LeeAnn was diagnosed with an adult diffuse intrinsic pontine glioma (DIPG) brain tumor at 44, she was a mom juggling a five-year-old daughter and a newborn son. What started as subtle facial tingling and hard-to-describe vision changes during pregnancy was initially brushed off as a normal part of being in her mid-30s and pregnant, too. Only after she drove herself to a postpartum appointment and realized she was seeing the road through a “kaleidoscope” did her OB-GYN recognize the seriousness of her double vision and urgently refer her to a neurologist. An MRI the day after Christmas revealed a tumor on her brainstem, and suddenly LeeAnn’s world shifted.
Interviewed by: Tory Midkiff Edited by: Chris Sanchez
The first phone call about the MRI results came from a physician she had never met. It was short, clinical, and transactional, delivered without checking if she was alone, had support, or could write down unfamiliar medical terms. Soon after, an oncologist explained that DIPG is a very rare and aggressive kind of brain tumor that’s usually seen in children. A second-opinion visit at a major cancer center left her feeling even more devastated; the physician told her the tumor would “kill” her and that she might have about five years with treatment. She walked out feeling robbed of a future with her children.
Instead of accepting that timeline, LeeAnn pushed for more information about her brain tumor. She sought out a neurosurgeon experienced in brainstem biopsies, despite being warned about the risks. The biopsy confirmed a grade 2 astrocytoma and a DIPG in her brainstem, and a local tumor board recommended radiation. LeeAnn underwent 36 radiation treatments to her brainstem, and follow-up imaging showed her tumor had shrunk significantly. She then entered observation mode and, eventually, remission with regular MRIs.
Surprisingly, remission was when she struggled the most. LeeAnn describes bitterness and fear as she tried to “re-assimilate” into a life that would never be the same. She focused on what cancer taught her: slowing down, staying present with her kids, writing down life lessons for them, and becoming more compassionate toward other people’s invisible burdens.
Now more than 11 years out from her adult DIPG brain tumor diagnosis, LeeAnn has watched her son grow into an 11-year-old and her now-16-year-old daughter approach high school graduation. She moved from healthcare marketing into higher education marketing, launched her own consulting business, and wrote a book, Finding the Rainbow: The Other Side of a Cancer Journey. Hearing a doctor finally say her prognosis is “unknown” once felt terrifying, but she has come to embrace it as a leveling truth: none of us has an expiration date. For LeeAnn, that “unknown” has become permission to live fully in the present.
Watch LeeAnn’s video above or scroll down to browse the edited transcript of her interview to learn more about her story.
Subtle symptoms like facial tingling and double vision during pregnancy can signal something serious, and trusting your instincts when things feel “off” can be lifesaving.
A rare, typically pediatric diagnosis, DIPG does not define a person’s worth or limit their right to advocate for more information, second opinions, and safer treatment options.
How a diagnosis is delivered matters: patients deserve compassionate communication, time to process, and clear guidance (including when not to Google) rather than rushed, transactional phone calls.
LeeAnn’s experience shows that remission does not necessarily mean “back to normal”; many people struggle after treatment, as they live with long-term uncertainty, fear, and both visible and invisible scars.
LeeAnn describes a powerful transformation from asking, “Why did this happen to me?” to asking, “What can this experience teach me?” This was a mindset shift that helped her find meaning, deepen compassion, and rebuild a life that feels more aligned with what makes her come alive.
Name: LeeAnn T.
Age at Diagnosis:
33
Diagnosis:
Brain Tumor (Diffuse Intrinsic Pontine Glioma or DIPG)
Grading:
Grade 2
Symptoms:
Facial tingling
Double vision
Treatment:
Radiation therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I’m LeeAnn. I am 44 years old. In 2014, I was diagnosed with a type of brain tumor called a diffuse intrinsic pontine glioma (DIPG).
Central Pennsylvania life and work
I’m in central Pennsylvania. I lived in Ohio before this.
I work for Penn State. That’s why I live in central Pennsylvania.
My DIPG brain tumor diagnosis while I was pregnant
So my story really begins, I like to say, with my children. At the time this all started, I had a five-year-old daughter, and I was about seven or eight months pregnant with my second child, my son, who is now 11. But toward the end of my pregnancy, I noticed two things were happening. One was that I had a really specific tingling sensation on one side of my face, and it felt like water kind of dripping on the inside. That was unusual. I hadn’t experienced that with my pregnancy with my daughter. So I remember talking to my OB physicians about it, and they said that it could be common in pregnancy. I was considered a late or an older pregnancy because I was in my mid-30s at that point, but they weren’t too concerned about it.
The other thing that I noticed in my second pregnancy, around the same time, was a little bit of a vision change, and I noticed it enough that I went to the eye doctor just to see if anything was changing. It was really hard to describe. It was subtle, but it was noticeable enough that I went to the eye doctor, and that exam showed that everything seemed fine. They said, “If it gets worse, you can come back and see us.”
I hadn’t put the tingling sensation and the vision changes together. For some reason, I just didn’t say anything to my OB-GYN doctors about the vision changes. After I had my son, I remember driving myself to my postpartum checkup with my OB-GYN. As I was driving, it felt like I was looking through a kaleidoscope. It was very strange and concerning, and I hadn’t noticed it until I made the drive to that appointment, because I was at home taking care of my son, who was a newborn, and so I wasn’t driving, and I wasn’t really leaving the house much. Around the house, I was fine, but when I left home and went to that appointment, I noticed that something was really wrong with my vision.
I went to that OB-GYN appointment, and she said to me at the end of the appointment, “Everything looks great. You look good, and it sounds like the baby’s all good.” I said, “Yes, there is this one thing that I’m noticing: my vision seems off; something seems wrong.” She said, “What does it seem like?” I said, “It feels like I’m seeing double.” Her face just kind of fell, and she said, “We need to get you to a neurologist now, because that is not good if you’re seeing double.” That led me to a neurologist later that week, I think it was, and that individual still couldn’t tell what was really going on with me.
He did a physical exam, and everything seemed fine, but he said, “Because of this vision change, you really need to have an MRI.” The day after Christmas that year, I went to have the MRI. I was really thinking that this was nothing, that this was maybe something left over from pregnancy or some weird hormone stuff. But I got a call about an hour after I had the MRI at the hospital, and the neurologist on call told me over the phone that the MRI picked up what looked to be a glioma on my brainstem and that she thought it was very treatable, but that I would need to see an oncologist really quickly. That led me to the oncology appointment the following Monday. That oncologist said, “Based on the MRI, this is a very rare type of brain tumor. It is more often diagnosed in children, and when it is diagnosed in children, it is often a very aggressive tumor. Brain tumors in children are often given, sadly, months or possibly years with treatment to live. DIPG is the name of that tumor.”
Getting a life-changing brain tumor diagnosis by phone
After the MRI, when I had it done, I really wasn’t expecting anything to come back that was serious. I really thought this was just something related to the pregnancy. To have the physician, whom I had never met, call me and give me that news over the phone was very jarring. I tell people now, “If you’re waiting for results after having any type of scan and the phone rings, before that moment happens, really try to brace yourself for any type of news that a physician may tell you over the phone after any type of imaging that you may have done.”
I like to advise people to have someone with them if the phone rings, and they are getting some news. I would advise them to take their time with the phone call, write down any terms that you’re not familiar with, ask them to spell everything for you, and see if you can have someone with you in that moment. Because when I got the phone call, I didn’t have any of those things. I wasn’t expecting to get a call, much less one that was really life-changing news. That physician, in that moment, looking back now, I think there were a million ways that physician could have given me that diagnosis. She could have asked me, “Do you have someone with you? Do you need to sit down? Do you have a piece of paper and a pencil or a pen handy, or a computer that you can type these words down? They’re not going to be familiar to you.”
I wish she had told me to stay off the internet, because the phone call was very short. It was all business. It was, “There seems to be a glioma on your brainstem. I think this is treatable. You are going to need to see an oncologist. I can help you get a referral there. Do you have any questions for me?”
I was really floored by the whole conversation. I didn’t know what a glioma was. I didn’t understand the gravity of that news. I knew it was serious when she said “oncologist.” I knew that word, and I knew that was serious. But I was so stunned at hearing this that it kind of stunned me into silence. Looking back on this, this was a physician whom I had never met, and I never saw that physician after that phone call. That was the only time that the physician had communicated with me. Looking back, there were definitely some things that I think the individual got really wrong with giving that news. I hope other physicians do a better job. I’m sure that they do, but I have to believe that some still see it as very transactional and don’t really think about the impact that could have for someone who’s receiving that news.
A rare adult DIPG brain tumor, and a devastating second opinion
My oncologist told me that this is a very rare type of brain tumor. It’s often diagnosed in children, not adults. He was recommending that I meet with a neurosurgeon locally to get his thoughts on this tumor type. I met with that individual. He agreed that this is very rare and that it’s often diagnosed in children, very rarely in adults. He recommended that I get a second opinion, and he helped me get an appointment at one of the best cancer centers in the world, actually. Maybe a week later, I took the out-of-town trip to go see this state-of-the-art, innovative, best-in-class cancer center.
I have to tell you that when I went for that second appointment, the physician walked in. She didn’t look at me. She washed her hands, and she asked me, “What brings you here today?” I was confused at the question because my neurosurgeon made it sound like he had had a whole conversation with her about my case and that he worked with her to get me in in a really short period of time. So when she asked me what I was there for, I felt really thrown by that question. I thought she would know me better or understand why I was there.
When I explained, “I’m here for a second opinion on a DIPG diagnosis,” she caught up pretty quickly and said, “Oh, okay, I remember, I understand.” Again, that visit felt very cold. It felt very sterile. It actually felt kind of rushed. She told me that I could go home and have radiation therapy. I did not have to go to that center for therapy. My local hospital had the same linear accelerator that they had. There was no clinical trial at the time that I would be eligible for. So really, my best shot at this was to go home and get my treatment.
I asked the physician, “What do you think my prognosis is?” I remember her biting her lip and saying, “Not good.” I said, “Will this kill me?” She didn’t hesitate. She said, “Oh my, yes.” I must have looked stunned because, of course, I went on the internet, and, of course, I Googled this. But I also knew not to really trust what I was seeing on the internet, that every patient is different, every case is different. I tried very hard not to focus on the worst possible outcome for myself. I was really hoping that she would tell me, “Actually, it’s hard to predict your outcome,” or, “We just don’t know enough about this tumor type,” or, “It’s so rare altogether.”
And it’s even more rare for adults that it’s difficult for us to say. But for her to definitively say, “This is going to kill you.” My next question to her was, “When? How much time do I have? Is it months? Is it years?” She said, “It’s hard to say. You might have five years with treatment. I’ve seen that happen.” I said, “What about ten years?” She said, “Ten, I can’t guarantee that. I don’t have a crystal ball. It’s hard to say.”
For me, as the patient, when you start putting timelines on things, and you start thinking about milestone moments, in my mind, I was thinking, “Okay, in ten years, my daughter won’t even be in high school. I won’t get to see her graduate, let alone get to high school. My son, who is a newborn, will be finishing up elementary school.” You start going through these milestone moments that you may not get to see. In that moment, when I heard that this was terminal and it likely would only be five years for me, the best way I could describe that feeling was it felt like I had just been robbed blind. I had no idea that that type of prognosis was coming. I did not expect to hear it from a physician at one of the best cancer institutes in the world. I felt really defeated in that moment. I remember sinking into that exam chair, with the terrible neon lights above, and just feeling so defeated already, and I hadn’t even started this battle yet.
Choosing a brainstem biopsy and radiation for my brain tumor
Somehow, I got myself together, came home, and really just had a shift in my attitude. I thought, “I’m not going to go by what that physician told me. That’s one physician. I’m one person. I don’t think that I have an expiration date. I certainly don’t feel like it’s going to be on that timeline. Maybe it will be, but I feel like I need more information.” We were going by an MRI, and MRIs are very accurate, I understand that, but that’s when I started looking into biopsy options for the tumor, because I really wanted to make sure, before I went ahead with radiation — which you can’t undo — and you really only have one opportunity with my tumor type to have radiation therapy. You cannot go in and keep radiating that same area.
For me, it was very important to have all the information I needed to move forward with the decision for radiation therapy. I found another physician who was doing biopsies on the brainstem regularly. He was doing them regularly with success. I moved forward against the advice of a lot of people who told me that it’s just way too risky, it’s way too dangerous, the brainstem is highly sensitive, and we really don’t advise that you have the biopsy. But I felt personally that I needed that information. I did have a brainstem biopsy done.
The biopsy confirmed what was in the MRI. It told me that it was a grade two astrocytoma, and it was a diffuse intrinsic pontine glioma, meaning it was in my brainstem. I presented that information to my local hospital. The tumor board at the hospital met, and they decided, “Yes, the next best step for you is radiation therapy.” In the spring of 2015, I had 36 radiation therapy treatments to the brainstem. I had a follow-up MRI, and the MRI mercifully showed that it had helped shrink the glioma significantly. From there, I was placed in observation mode, which meant that I would have to go every six months to have an MRI to see if there was any change in the tumor.
Going into remission and the hidden emotional toll
After months and then years of this, eventually a physician told me that I was in remission. This is now in remission. Now I have an MRI every two years to monitor the glioma. But I have to say that in my journey, that period of remission was actually when I struggled the most, and I did not expect that.
People think that the hardest part of the battle is getting through treatment, and that is a very significant part of the cancer journey. But for me, I wasn’t expecting to struggle as much as I did in remission. When you think of the word remission, you often think of celebration and that it’s all behind you. But I realized quickly that it was never going to be behind me. It was now a forever thing in my life, and it was really hard for me to navigate and re-assimilate back into my old life, knowing that it would never be the same as it was before this, and learning to live with having this every day and managing all of the anxiety and the fear that you carry as a cancer survivor.
Finding meaning and gratitude after cancer
I think what really helped me — like I said, in remission, I still felt very bitter — I was asking myself a lot, “Why did this happen to me? Why did I have to go through this as a young mom with two children at home? Why me?”
I started asking the question differently. I started asking, “Why did this thing happen to me?” — with the emphasis on “this.” What was this meant to show me that my everyday living wasn’t teaching me? When I started really thinking about that question, that changed my outlook completely. I started realizing that one thing cancer will do for you, for sure, is slow you down. It will command your attention like nothing else can in your life, because you’re fighting for your life.
When I look back now at that period, I realize that I did things that I probably would never take the time to do, but I did them because I was really trying to stay present and trying to ground myself in the blessings of my life. I took time to think about who made an impact in my life up until that point and why.
What did they teach me? I also thought a lot about what I could share with my children now that I want them to know, in case I’m not here someday to teach them — whether it’s this is how you cook, this is how you make friends, this is what to look for in a future partner, this is what to do when you’re having trouble with your friends or your family, this is how you manage conflict. I know for sure that I would not have thought about those things as much as I did had I not been facing my mortality, thinking about what would happen if I weren’t here for them someday. That was actually a great blessing that I found that cancer gave me that probably nothing else would.
I also realized that cancer made me become a much more compassionate individual. I already considered myself to be an empathetic person, but it changed entirely for me. Now I feel like I’m someone who lives with this invisible scar. To meet me, you probably would have no idea that I had a brainstem biopsy, that I went through brain surgery, that I went through radiation to my brainstem, that I’m a brain tumor survivor. But one of the lingering symptoms for me is that I still struggle with my vision.
Living with lingering vision changes and invisible scars
I have now gone through two rounds of vision therapy. It’s gotten better, but it’s one of those symptoms that will just never really change for me. It might get a little better, but it will never be back to where it was. I feel like now, if I’m carrying this, then I can only imagine what other people are carrying — that everybody has something, something deeply painful, because we’re all human and we can’t escape life without, unfortunately, some deeply painful moments.
Knowing this now, I really try to think about what other people might be carrying and not worry so much if they’re rude to me or if they’re unkind. I now know that everyone’s carrying something invisible about them because I know that for myself, and I can only imagine that that’s true for other people.
Redefining purpose and what it means to come alive
The other great lesson that stayed with me is a quote by Howard Thurman, because I really think he said it best. When you’re thinking about your purpose in this life — what you’re meant to do, what you’re called to do — he says, “Don’t ask yourself what the world needs. Ask yourself what makes you come alive, because what the world needs are more people who have come alive.” Truly, I strive to do that every day. I think about what lights me up and what fills me up.
It doesn’t have to be big, extravagant things. It could be something as simple as just taking a break and getting outside for a walk or a jog, or connecting with my kids, or taking time with my pets. Simple things can really fill your cup. I really try to spend as much of my time doing those things and being around those people that give me really good energy and light me up and make me come alive.
Surpassing milestones I thought I would never see
When I think about the milestones that I was afraid I would miss, and I see myself now meeting those milestones, seeing those things happen — seeing that my daughter now will be a junior in high school next year, she graduates in two years — that’s a moment that I thought I would not get to see. It’s all extra blessings. It’s all extra special to me because those were moments that I thought I would not get to see, that I would not live to see. It makes them even more special.
Embracing an unknown prognosis and focusing on the present
One of the things that really changed my attitude toward all of this was when I was in observation mode and having the MRIs. I would always ask the physician, “What is my prognosis?” They hated that question because they didn’t know how to answer it. They really, truly didn’t know. At one point, one of my physicians said, “Your prognosis is unknown.”
At first, that felt very scary, to be unknown. But when I reflected on it, I thought, “Actually, I like that, because in a sense we’re all unknown.” That puts me on the same playing field as everyone else. Now I don’t feel like I have an expiration date. I really believe that I could have worried about that, or I could continue to worry about this tumor all day, every day, and it still may not be the thing that kills me. I still may have it be a car accident; any number of things could happen to me. It still may not be the thing that defines my life.
I choose to see it that way — that we’re all unknown. None of us really has an expiration date. We should be joyful for the time that we do have, because that’s the only thing we own for sure, the present moment.
Life 11 years after my DIPG brain tumor diagnosis
So looking back now, 11 years later, it is really amazing to me to see all of the things that have happened to me that I never thought would have been possible 11 years ago. Seeing my son, who is now 11, and my daughter, who is now 16, is really remarkable.
Since my diagnosis and since my treatment, other amazing things have happened for me. I was working in healthcare marketing at the time of my diagnosis and during the treatment and for a few years after that. I now work in higher ed marketing, so I changed industries completely, and that has been an amazing journey. I also published a book, Finding the Rainbow: The Other Side of a Cancer Journey, which talks a bit more about my lessons learned after the cancer diagnosis and treatment. I also started my own company, so I do marketing consulting as well. It’s been an amazing, incredible journey that I never would have expected for myself, and I probably never would have ventured into had I not faced this challenge and this unique journey.
Rebuilding Her Identity: Alicia’s Pancreatic Neuroendocrine Cancer (pNET) Experience
Stage 4 pancreatic neuroendocrine cancer (pNET) reshaped Alicia’s life in ways she never anticipated. She describes herself as someone who “was always… a healthy person,” a full-time mom, professional makeup artist, and former salon owner who poured her energy into her children, her clients, and her 22‑acre farm. Looking back, she now sees how long she sidelined her own needs. She pushed through escalating symptoms while telling herself it was just stress from a difficult home environment and an emotionally taxing divorce.
Interviewed by: Carly Knowlton Edited by: Chris Sanchez
The early signs of pancreatic neuroendocrine cancer, a type of pancreatic cancer, were subtle and easy to dismiss. In Alicia’s case, they included hormonal changes, intense acne despite her expertise in skincare, flushing she did not yet have language for, stomach pain, and nausea so reminiscent of pregnancy that she kept taking pregnancy tests. As her divorce progressed and her health insurance fell away, financial barriers compounded the problem. Even as her stomach pain worsened and her legs became so swollen she could not bend them, she hesitated to go to the hospital.
Everything shifted when loved ones physically helped her into the car and drove her to the emergency room. A cascade of scans, GI referrals, and ultimately blood work led to the call that changed everything: she had an urgent appointment with an oncologist that same day. The diagnosis, stage 4, grade 3 pancreatic neuroendocrine cancer, meant starting with oral chemotherapy and monthly hormone therapy injections. She then had surgery to remove part of her pancreas and her spleen, followed by liver-directed treatments. Later, she had chemotherapy infusions with a take-home pump.
Alongside the side effects of nausea, fatigue, pain, night sweats, and the reality of lifelong treatment, came deep emotional work. Alicia speaks candidly about feeling crushed by the timing of her diagnosis, the impact of a toxic relationship, and the heartache of stepping back from the makeup work that once fueled her sense of purpose. Over time, she rebuilt a new identity centered on integrative care: yoga, meditation, journaling, putting on her own makeup, and intentionally celebrating every victory, no matter how small. Now, she is channeling her experience into videos and advocacy so that others with pancreatic neuroendocrine cancer might recognize symptoms earlier and learn to prioritize themselves sooner than she did.
Watch Alicia’s video and read through the edited transcript of her interview. You’ll find out more about her story:
Listening to persistent hormonal and digestive changes, like flushing, severe stomach pain, and unexplained nausea, can be critical in catching pancreatic neuroendocrine cancer earlier, even when life stress makes symptoms easy to dismiss.
Financial barriers and lack of insurance delayed Alicia’s workup, underscoring how structural issues can slow diagnosis even when someone knows in their gut that something is wrong.
Treatment for stage 4 pancreatic neuroendocrine cancer can include multiple treatments. It is the disease and its response to these treatments, not the patient, that dictate outcomes.
A universal truth Alicia highlights for patients: you know your body best. When something feels off, it is important to keep advocating, even if you have been brushed off before or are used to putting yourself last.
Alicia’s transformation centers on learning to ask for help and to rebuild her identity beyond work and caregiving. It also includes embracing daily practices, like yoga, meditation, journaling, and doing her own makeup, that make room for joy and small victories alongside lifelong cancer treatment.
Name: Alicia S.
Age at Diagnosis:
37
Diagnosis:
Pancreatic Neuroendocrine Tumor (pNET)
Staging:
Stage 4, Grade 3
Symptoms:
Abdominal pain
Nausea
Swelling
Extreme fatigue
Hormone-related changes
Severe acne
Flushing
Treatments:
Chemotherapy: CAPTEM and FOLFOX
Surgeries: distal pancreatectomy, splenectomy
Radiation therapy: Y-90 radioembolization
Hormone therapy: lanreotide
Bland embolization
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
My stage 4 pancreatic neuroendocrine cancer diagnosis
Hi, my name is Alicia, and I was diagnosed in June of 2020 with stage 4, grade 3 pancreatic neuroendocrine cancer.
Passion for skincare, makeup, and family
I am incredibly passionate about skincare and makeup. It is something that I have always done, and I have been in the industry since I was about 15 or 16. I am incredibly passionate about that.
I love animals. I think I gravitate towards them more than people sometimes, and when I am not feeling good, I hug my babies. I also love spending as much time with my family and friends as possible. They are incredibly important to me. Family and friends are everything to me.
Life as a mom, business owner, and farmer before my diagnosis
Before being diagnosed, I was a professional makeup artist and owned a salon. I would go and do on-location bridal and event makeup, and I really loved what I did.
I have two boys, so I was a full-time mom and a full-time working business owner. I was homeschooling my children; I only did that for a year, but we did try it. About a year and a half before diagnosis, I had moved to a 22‑acre farm, so I had some animals out there. Every day life was, I thought, completely normal. I thought I was doing well. I was incredibly busy, taking care of my kids, taking care of a farm, and doing everything for our household.
Because of that, I pushed myself to the side. I was never a priority; everything else took priority. Daily life was normal, probably just like everybody else’s: working, taking care of my kids, taking care of my home, and just doing everything.
Early red flags and hormonal symptoms
I had been living in a very stressful environment, and a lot of the symptoms I was experiencing got pushed off because of the type of symptoms this cancer produces. There are a lot of hormonal symptoms, and they are very easy to brush off, especially when you are under so much stress and anxiety.
It started with emotional symptoms and feeling overwhelmed. My face was completely breaking out, and being a licensed esthetician and makeup artist for as long as I had been, I had always taken very good care of myself. When I could not get that under control, I blamed it on stress and anxiety.
A little over a year before I was diagnosed, I started having issues when I would eat, and my stomach would be in knots with stomach pains. Again, I thought I was under so much stress and anxiety, so everything was brushed off as that because of the type of symptoms this cancer produces. I was getting flushing, but at that point, I did not know what flushing was, just red splotchiness.
I had a lot of stomach pain. I was taking pregnancy tests because so many of the symptoms I was having, like nausea and not feeling well when I was eating, were very similar to pregnancy. Because of the hormonal issues, a lot of it felt like pregnancy, and I kept thinking, “How is this negative?“
Closer to diagnosis, I was going through a divorce, which amplified all the stress and anxiety. I was so encompassed with everything going on that there was so much I was not paying attention to. When you are taking care of your kids, your business, and going through a divorce, you get pushed to the very end of the list. I did not even make my own list of priorities, other than making sure I was put together so I could go to work and function.
Reaching a breaking point and going to the ER
I probably knew for sure by April of 2020 that there was something really wrong. I remember being at Easter dinner at my mom’s house and having to constantly get up and excuse myself to go to the bathroom because my stomach was in so much pain. That evening, I told her that something was not right, and I knew something was wrong.
Because I was going through a divorce, I did not have insurance, so I kept pushing it off. I did not financially have the means to go, and I did not have insurance, so I ignored it even though I knew something was wrong. Cancer was never on the radar. I always considered myself a healthy person. If I got sick, it was because my kids were sick, and I would go to a minute clinic and say, “My kids have strep; I have strep.” I did not even have a primary care physician and never prioritized my own health, just my kids’ health.
After April, the symptoms continued to worsen. My legs became so swollen that I could not bend them. People kept telling me I needed to go to the hospital, and I kept saying I was not going, that it would pass. Finally, I realized there was something really wrong, and I needed to go.
I could not move my legs, so they had to pick me up, put me in the car, and drive me to the emergency room. They did scans and blood work in the ER and then referred me to a gastrointestinal specialist. I was not told that there were any masses. The referral was to a doctor I would not be able to get in with for a couple of months, which was not an option with how I was feeling.
Fortunately, everything kind of fell into place. My parents had a doctor friend who referred me to a gastrointestinal specialist who could see me much quicker, and I went to see him.
Financial barriers, costly testing, and emotional toll in 2020
I did not have insurance, so I had to pay out of pocket for the appointment. At that point, it was obvious that something was wrong, so I had to find the funds to go.
I remember the doctor saying he thought it was hepatitis, and I wondered how that could even be possible. He sent me for blood work, and I had to pay for that out of pocket as well. It was incredibly expensive. During 2020, because of COVID, it was very difficult to get into places, and everything was very expensive.
I remember the nurse telling me she had never cried for a patient before, and she was bawling her eyes out when she had to charge me for my blood work. She looked through all the tests they wanted to run and knew there was nothing she could take off, and we both sat there crying. I felt like I did not have a choice any longer; we had to do the blood work.
I left still not thinking about cancer at all. Even going to the ER, seeing the GI specialist, and going for blood work, cancer never once popped into my head.
Getting the call and meeting my oncologist
The day after my blood work was done, I got a phone call first thing in the morning from the doctor’s personal phone, which is never good. He told me they already had my blood work back, he had already called and talked to an oncologist, and I had an appointment that day at 2:00. He told me I needed to go that day and meet with him.
I held it together until I ended the phone call, then I collapsed in my kitchen, bawling my eyes out and feeling completely crushed. I had been getting myself out of a bad situation, going through a divorce, and finally feeling like I was getting to a good place, and then I felt like I was crushed back down. I could not even make the phone call to my family because I was so emotional.
My now-fiancée was with me. He is the one who picked me up, put me in the car, and took me to the emergency room, telling me I did not have a choice. He really saved my life, because I probably would not have gone and would have continued to push it off. I had to give him the phone to call my family and tell them something had come back on my blood work and that I had an appointment with an oncologist.
Learning I had “the good pancreatic cancer”
I was told I had an appointment with the oncologist that day, and I am so blessed to have an amazing family and support system. My mom and stepdad live two hours away, and they met us at the doctor’s office.
My mom went in with me. During COVID, nobody could go into these appointments with you, but I was very fortunate that they allowed my mom to come in. I remember talking with the oncologist.
I am trying to remember whether they already knew at that point that it had something to do with my pancreas, or if I was sent for scans first and then had a biopsy. Either way, the oncologist said if we were lucky, it would be “the good one,” the good pancreatic cancer. There is no good cancer, and I do not think there is any good cancer, but fortunately for me, mine was the “good,” if you want to call it that, type of pancreatic cancer, because it is more slow‑growing.
The problem with a slower‑growing cancer is that most patients are not diagnosed until they are much further along because the symptoms are so easy to brush off. Another issue with neuroendocrine cancer is that it can appear in places other than the pancreas, and it is a rarer type of cancer. Because of that, most doctors do not immediately think of it, and a lot of patients get pushed off with explanations like “it is just this” or “it is just that,” when it is not.
Rare neuroendocrine cancer and delayed diagnosis
We put a lot of weight into our doctors’ words, especially if we have never prioritized ourselves or our health. Many patients just go with what they are told; if they do not push back, they keep getting brushed off, and time passes until they are diagnosed at later stages.
Before diagnosis, there was nothing that was a huge standout red flag to me, saying, “You need to go now.” There is no telling how long I had been living with this cancer without realizing it. I am stubborn and push myself through everything, so any symptom that popped up was pushed aside with that mindset.
Feeling dismissed, yet knowing that something was wrong
It can be very frustrating for patients because you know something is wrong, but when you tell a doctor how you feel, and they brush it off as something lesser, you think they know better than you do. In reality, we know our bodies, how we feel, what feels normal, and when something does not.
If you are not prioritizing yourself or you are not even on your own list of things to think about, you are not in tune with your body. That makes it even easier to ignore or minimize symptoms.
Paying out of pocket and cancer’s financial strain during chemo
Paying out of pocket was not an option I felt like I could avoid. If it meant maxing out a credit card, I still had to do it. During the divorce, I had closed my salon prior to 2020, so I did not have my salon income or anything coming in.
For me to come out of pocket was nearly impossible, but I still maxed out a credit card to get the blood work done because at that point, I knew I had to. Thank God I did.
My initial treatment: Oral chemo and hormone therapy
Once I met with the oncologist and the staging and pancreatic involvement were clear, I was told my primary tumor was in the tail of my pancreas and had spread to my liver. I was told the masses were too large for surgery, so that was not an option for me initially.
I was started on chemotherapy, specifically an oral chemo called CAPTEM. I was incredibly grateful for that because I was able to be at home in my own environment, where I felt comfortable, instead of being in a hospital. Being home meant I could have my support system around me, whereas others going through treatment at that time had to be alone in treatment rooms due to COVID.
I was mentally in a bad place before and after diagnosis, so it was a blessing to do oral chemo at home. I do not think I would have had such a positive response if I had not had my support system around me. We initially discussed 12 rounds of CAPTEM. It is two weeks on, two weeks off, in a repeating cycle. My body made it through 11 cycles and then said that was it; we could not do any more.
I have been on lanreotide injections monthly since the beginning, and that never stopped.
Surgery to remove part of my pancreas and spleen
After cycle 11, we did scans. Thankfully, my body responded very positively, and the primary mass at the tail of my pancreas had shrunk enough for me to be a candidate for surgery.
I had surgery to remove the tail of my pancreas, and they also removed my spleen. After that, I had to focus on recovery. Since the beginning, alongside all this, I continued my monthly lanreotide injections.
Liver-directed treatments: Chemoembolization, bland embolization, Y90
After surgery and a period of recovery, I had a break. About a year after surgery, follow‑up scans showed growth in the masses on my liver.
Because of that, it was decided that I needed to start treatment again. The treatments then included chemoembolization, bland embolizations, and Y90 radiation. I went through those and was able to have another break, which was really nice.
Starting FOLFOX chemo, infusion pumps, and a changing oncology team
In October of 2024, my scans showed that I again needed to restart chemotherapy. I started on FOLFOX in December 2024, which required me to go into the treatment room for multiple hours.
After the infusion, I had to leave with a pump that continued to deliver chemotherapy for the next two days. Then I had to go back two days later to have the pump removed, and then I had a week before going back again. So, every other week, I was doing this.
It is very difficult to have a schedule like that because you cannot plan anything. First, with cancer in general, you never know how you are going to feel or how much energy you will have. On top of that, being connected to pumps, not feeling good, and not sleeping well made it even harder.
I have dogs, which is amazing, but because my port was connected to a pump, nobody could sleep in the bed with me because we did not want to risk anything getting pulled out.
In May of 2025, my original oncologist moved to Colorado. He referred me to another oncologist who is actually a neuroendocrine cancer specialist. My initial oncologist was not a specialist, but I was incredibly fortunate that he was someone who looked for rare things and was quick to diagnose me. During his care, every time I had a scan, he presented my case to a hospital board, so other oncologists weighed in.
The oncologist he transferred me to had always weighed in on my case when it was presented. That has been amazing. “
Recovering from major surgery and rebuilding a routine
Recovery from the big surgery was very difficult. I was in the hospital for about a week and then came home and spent a lot of time in bed.
I tried to do as much as I could to work myself back into a routine, because routine is incredibly important to me. It gives me something to look forward to and a “next thing” that I need to do. All of the things I needed to do were things I needed to put in place to support myself in healing and recovering.
Side effects from chemo and radiation
With the initial chemotherapy, I was incredibly sick. It was very hard on my body. I was already in pain before starting treatment, and that pain was amplified once chemotherapy began.
I was very sick and literally had to have a bucket next to me at all times. I was completely drained of energy and slept a lot. Fatigue was huge. I could not eat and had no appetite, whether it was because I was afraid of throwing up or because I could not really taste food.
I was hurting and uncomfortable, dealing with fatigue, stomach issues, and night sweats. Those are the side effects from that period that I remember the most.
My mental health struggles after diagnosis
To be completely honest, in the very beginning, when I was diagnosed, I was not in a good mental place. I felt like I had just started clawing my way out of a hole and had finally, after over a decade, found some happiness, and then I felt completely crushed.
On top of the cancer, I was going through a divorce in a toxic situation with a narcissist who was also an alcoholic. Even though I was sick and fighting, that did not stop him from adding to it and doing everything he could to make it worse.
It was very difficult to get to a good mental place because it was not just the cancer I was battling; there was so much more on my plate that I was trying to work through mentally. In the beginning, I was not in a good mental place at all, and my support system helped me the most because I could not do that for myself at that point.
Parenting teen boys while in treatment
Being a mom during all of this was really difficult. Luckily, my family is incredibly close, both emotionally and in proximity, so I had help when I needed it.
I tried to function as normally as I possibly could when my kids were there. I was still making their lunches and doing what I could, even if I was crawling up the stairs at the end of the night. I wanted to do everything I could to be the mom they knew, the person I knew, and the mom I did not want to go away. I did not want them to suffer because of what I was going through.
When I was diagnosed, my two boys, who are 14 months apart, were in eighth and ninth grade. I had just moved them from two hours away back to where we had lived before owning the farm, so at least we were in an area they were familiar with.
The emotional challenge of asking for help
One of the most difficult and emotional things for me in the beginning was coming to terms with the fact that I was going to have to ask for help. I was never one to ask for help and was always the one to do everything. I am very independent and have been that way my entire life.
I remember either just dropping off my boys with their dad or going to the store. I had to pull over and park my car, and I broke down in tears, realizing I could not do this alone. There was no way I could continue to function at the level I was functioning, do everything, and still try to help myself.
That was probably the point where I realized I had not been taking care of myself or prioritizing myself. Everyone else had come before me, and I needed to step back, ask others to step in and help with the things I was doing, and focus more on doing things for myself and my body and healing. I needed to do that so I could go back to being the mom I wanted to be and the person I wanted to be. Asking for something was probably the most difficult thing for me.
Transitioning to FOLFOX maintenance and managing side effects
I am still on chemotherapy, and I recently went back on treatment. With FOLFOX, I am currently in maintenance mode.
Now I am very fortunate that I do not leave with the pump. They tapered back some of what they were doing because I was having a plethora of side effects from the treatment. They wanted to see if backing off a bit would improve the side effects that were greatly impacting my life.
Having to stop doing professional makeup
I am not currently able to do hair and makeup on the side, even though I am so passionate about it and love it so much. My big thing was doing makeup for people because I could see their confidence grow while they were sitting in my chair.
I would have girls or women who, for whatever reason, had beaten themselves up emotionally, or life had just worn them down, and they did not feel good about themselves. As I did their makeup, I would see a boost in their confidence, and that made me so happy and was so fulfilling for me. I think that is why I was so passionate about it.
Unfortunately, because I never know how I am going to feel, I can no longer take on clients. You cannot cancel on a bride at the last minute, and I would never do that or put anyone in that position. With my body not being reliable, it is not something I can continue to do. That was very difficult because I got so much joy and fulfillment from providing that boost of confidence for people.
Losing and rebuilding identity after cancer and divorce
We talk a lot about losing our identity. My identity was a wife, a mother, and a business owner. I went through a divorce, my kids were no longer with me full‑time, and I was not able to do makeup, so everything I knew of myself was suddenly gone.
I had to pivot and figure out what I was going to do that would make me happy. It took a couple of years, and I had a very difficult time. I would say that within the past two to three years, I have really been able to make a mental shift, and that has made all the difference.
Most recently, because doing makeup and boosting other people’s confidence brought me so much joy and made me feel fulfilled, I decided to find a way to take that feeling and help others. Now I am making videos and trying to get the word out about this type of cancer, about prioritizing yourself, and about creating an environment where you can thrive and that is healthy for you.
When you are going through chemo, radiation, cancer, or any illness, creating a healthy environment for healing and thriving is so important. I am really excited that I have found that focus, because it has helped fill the void I have felt since no longer being able to do makeup, have the salon, and do all the things I was so passionate about.
Prioritizing yourself, your energy, and a healthy environment
I really hope that people will sit back and think about what they are spending their energy on, who they are spending their energy on, and where they are prioritizing themselves. We get so busy and focused on so many other things that we are not in tune with our bodies and are not prioritizing ourselves or putting ourselves in a position to thrive.
When we are able to make a mental shift to a more positive place, I really feel like our body listens to that. That is when you start to see more improvements, even if it is as simple as getting up and feeling excited to have something to look forward to instead of waking up and thinking, “I hurt, I do not want to get out of bed.”
There has to be a mental shift to positivity and things to look forward to, to keep you going and fighting. You have to make that mental decision that you are going to fight.
Even now, I still sometimes push myself too much because I am stubborn and was so used to doing everything and not asking for help. Sometimes I get myself in trouble and realize I am going to hurt later, and then not be able to do something fun.
I am very blessed to have people in my life who will step in and do the not‑so‑fun things, like laundry or grocery shopping, so I can reserve my energy for things I enjoy, like a date night with my fiancée.
My daily routine: Yoga, meditation, journaling, and makeup
When I talked about my routine and trying to put a routine in place for me, that looks like getting up and doing yoga in the morning and meditation. I journal, and I really try to make sure that every day I am putting myself together and putting my makeup on, even if I cannot do it for other people, doing it for me.
When I feel like I look good, I feel better. When you are put together, and you walk past a mirror, and you are not feeling good but still look like you, there is a huge difference between that and walking past a mirror looking sick and feeling sick. That can really impact how you feel mentally and how you fight.
When I can get up and do my yoga, my meditation, my journaling, and my makeup, that is a victory for me. Even if I cannot accomplish all of those things on a given day, because there are days when it is not going to happen, I will pick one or two of those things. Even accomplishing one of those things is a victory.
Celebrating my small victories and tracking my progress
We need to capitalize on every victory, no matter how small it is. That applies to everything in life.
When I look at my blood work and see that, even if it is not a huge difference, it is moving in the right direction, I choose to be happy and excited about that. If we do not recognize those smaller achievements and only focus on big milestones, we are probably not going to be as happy with our progress.
Recognizing little victories along the way, no matter how small, makes things more positive.
My long-term treatment plan, and living with chronic cancer
As far as my long‑term treatment plan, I have been told that for the rest of my life, I will have to be on some kind of treatment. That can be incredibly frustrating to hear.
I do not know if, at some point, the treatment will change from one thing to another. There are so many unknowns when you are going through cancer, especially when it is chronic, and you are going to be living with it for the rest of your life.
When the oncologist says you will have to be on treatment for the rest of your life until science catches up and comes up with a cure, that is where we are right now. I know what my current treatment plan is, but everything is up in the air, and you have to go with the flow.
I do not know at what point this treatment will no longer be as effective, and we will need to find something else. For me, incorporating yoga, journaling, doing things for myself, and making plans with friends for lunch dates and activities that bring me joy is just as important as chemotherapy and other treatments.
It has to be both; it cannot be just one or the other. It really has to be more of an integrative approach because one is not going to be as effective without the other. You need a very strong, motivated mindset to go along with your treatment to get the most out of it, in my opinion.
Reaching a better mindset and helping others get there sooner
I do have a really good mindset about it now, thank goodness. I am hoping that, by other people hearing this, they will be able to get to that point sooner than I did and see the benefits more quickly.
I wish I could put this message out on a big amplifier for everybody. If people can learn from my mistakes, then they do not have to go through the same things. If they can catch this sooner than I did, or even if it is not cancer‑related but about prioritizing yourself for your mental health, those things are very important.
Symptoms: Fainting spells, fatigue, dizziness, anemia, shortness of breath, absence of menstruation, unexplained weight loss, night sweats Treatment: Surgery (total gastrectomy with a Roux-en-Y reconstruction)
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