Tag: young adult

Bile Duct Cancer at 27: Morgan’s Path to Answers, Care, and No Evidence of Disease

Post author By Chris Sanchez
Post date April 19, 2026
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April 19, 2026

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.

Transcript of Morgan’s Interview

Why I share my bile duct cancer (intrahepatic cholangiocarcinoma) story
My life at 27 and getting diagnosed
Early symptoms and red flags before diagnosis
My long path to a rare cancer diagnosis
Having to self-advocate when doctors dismiss symptoms
How undiagnosed symptoms affected my daily life
The night everything changed: getting my cancer diagnosis
Being told it was “not cancer” and then hearing “I failed you”
Processing a rare cancer diagnosis at 27
My mindset: choosing to fight and refusing to give up
Why I sought a second opinion and chose Mayo Clinic
Putting myself first to get the best cancer care
Moving to Mayo Clinic: My experience at a comprehensive cancer center
My treatment plan: Chemotherapy and two major liver surgeries
Ongoing healing: Physical recovery, PTSD, and “scanxiety”
The day I heard “No Evidence of Disease”
The hard aftermath: Living with a “terminal” diagnosis and fear of recurrence
How I mentally prepare for scans and blood work
Choosing to truly live my life after cancer
Finding meaning, community, and love through cancer
Advice for young adults diagnosed with cancer
What young adult cancer awareness and better care mean to me
The hardest part of the last few years
Learning to set boundaries and put myself first
My final message: Be present, and be grateful

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.

Thank you for sharing your story, Morgan!

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“I’m Still Affected 25 Years Later”: Maria’s Experience with Kidney Cancer

Post author By Chris Sanchez
Post date January 16, 2026
No Comments on “I’m Still Affected 25 Years Later”: Maria’s Experience with Kidney Cancer

January 16, 2026

“I’m Still Affected 25 Years Later”: Maria’s Experience with Kidney Cancer as a Child and Colon Cancer as a Young Adult

Maria’s cancer experience began when she was just 15 months old, when she was diagnosed with Wilms tumor, also known as nephroblastoma, a pediatric kidney cancer. Growing up, she was in and out of hospitals in Ottawa, Canada, for countless appointments, treatments, including surgery and radiation, and a gastrostomy tube or G‑tube that stayed in place for 12 years. She says that as a young child, all she knew was that she was sick and assumed everyone else lived that way, too. She adds that she felt confused and in denial about the seriousness of her cancer.

Interviewed by: Ali Wolf
Edited by: Chris Sanchez

As a teenager, Maria says she started experiencing bleeding in her stool and stomach issues, but when she told her pediatric oncologist about these symptoms, she wasn’t taken seriously. Eventually, a colonoscopy revealed early-stage colon cancer, which was removed with a small surgery. Even then, Maria’s instinct was to think, “It’s gone, so everything is good now.”

In her 20s, Maria faced new challenges, including bowel obstructions and recurrent polyps requiring colonoscopies every six to 12 months. For about half a year, clinicians suspected she had Bloom syndrome (BSyn), which can carry a significantly shortened life expectancy. Later results confirmed mosaic variegated aneuploidy syndrome 3 or MVA3, a rare genetic disorder where some cells have an abnormal number of chromosomes. MVA3 is associated with increased cancer risk, especially Wilms tumor.

That diagnosis transformed Maria’s outlook. During the months when she thought she had Bloom syndrome, she believed her life might be very short. She focused on Brazilian jiu-jitsu and spent time with her cats. After learning about MVA3, she was told she would likely live much longer. She began planning her career, and today Maria works as an educational assistant supporting students with disabilities. She continues to heal emotionally through therapy, peer cancer communities, and her own evolving understanding of her experience as a childhood cancer survivor.

Watch Maria’s video or read the edited interview transcript below to know more about her story.

Maria explains how her rare condition has affected her physical and mental health decades later
She highlights the importance of self‑advocacy in healthcare, especially as a young adult whose symptoms were dismissed or minimized
The importance of connecting with other young adult cancer communities and doing therapy to recognize that long‑term emotional and physical effects are common and valid
A universal truth in Maria’s experience is that patients often know their bodies best and deserve to be heard and believed when they describe symptoms
Her perspective shifts from denial to healing, helping Maria to envision a bright future that includes work, hobbies, and ongoing healing

Name: Maria F.
Age at Diagnosis:
- 15 months
Diagnosis:
- Kidney Cancer (Wilms Tumor)
Mutation:
- Mosaic Variegated Aneuploidy syndrome 3 (MVA3)
Symptom:
- Back pain
Treatments:
- Surgery: nephrectomy
- Chemotherapy
- Radiation

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.

Transcript of Maria’s Story

Hi, I’m Maria
New job and working as an educational assistant
Living with disability and wanting to support others
Childhood innocence and realizing life was different
Family silence, denial, and wanting more information
Learning the word “cancer” and truly understanding it as an adult
Denial, early colon cancer, and not being believed
ER experiences, advocacy, and pain
Early colon cancer removal and initial denial
G‑tube, long‑term pain, and waiting for help
Feeling like a burden and hearing my mother’s pain
Cancer camp, Young Adult Cancer programs, and therapy
Finding connection with other survivors
Bowel obstruction, polyps, and finally getting coordinated follow‑up
My thoughts on genetic testing and Wilms tumor features
My experiences at different ages and PTSD from procedures
Minimization of pain and struggles in the ER
Early signs as a baby and port, surgery, chemo, and radiation
Self‑advocacy, mental health, and healing from childhood cancer

Hi, I’m Maria

I had Wilms tumor, which is a kidney cancer, when I was 15 months old. I live in Ottawa, Ontario, Canada.

I am 27 years old. I just turned 27 last week, and I’m a big enthusiast of martial arts, and I do Brazilian jiu-jitsu. I’ve been doing this sport for about eight years, I believe, and I did kickboxing in the past, and I compete once or twice a year. I’m really interested in that. That’s one of my biggest passions.

I love Brazilian jiu-jitsu because it makes me feel more empowered and able to do things in my own body. Even though what I’ve been dealing with as a child, I’m still able to use my body and to perform with my body. It’s very physical, but it’s also challenging to the mind, and it’s very close contact, so you make friends for life, and you’re in very close contact with them. You have to trust them, and through jiu-jitsu, I’ve been able to feel a bit more confident in myself. I’m still trying to increase that, and I’m also trying to increase more positivity in my life, and I have a lot of great people there that help me get through that and help support me.

I help support them as well in what they need in life.

New job and working as an educational assistant

I actually just had an interview yesterday for a job, and I got the job today. So I’m happy to see in the new year what that will lead to. Currently, I’m also a casual EA at the school, but starting in the new year, I think I will have a more stable position at the school.

Right now I’ve been helping a lot with people with disability or in wheelchairs. I did that in the past as well, but now I’m in the schools with that, so I help them with education as well. It’s an EA. Yes, it’s an educational assistant.

Living with disability and wanting to support others

I think because I’m also a person with disability, and I don’t think I really understood that when I was a kid, and understood all the possibilities of help that I could have had. I had my mom advocate for me for some help as well. But now I see the amount of help that you can ask for. Now it might be different because of the difference in generations.

I think just trying to support kids now, and also adults, when I used to work with adults, just to be able to fulfill their life and make their life easier in education, that’s why.

Childhood innocence and realizing life was different

I think I was very innocent as a child. I didn’t really think of anything at all. Later on, as I aged, I noticed that not all my friends were dealing with the same stuff. I thought everyone dealt with it. I thought having millions of appointments a year would be normal for people. I just knew I was sick when I was younger, and that’s all I knew.

When I tried to ask my parents when I was more curious and I turned a bit older, they would tell me, “Oh, well, your brothers are going to do the same thing when they get your age,” since my brothers are younger than me. For me, I thought, “Haha, they have to deal with this stuff when they’re older.” But it was definitely not the truth. I think they did that to protect me, and they weren’t sure what they wanted to tell me or how to tell me yet, because I was still a young child.

I also felt, because of the cancer stuff too, that I did feel like a normal child, but I knew that I didn’t really develop as much as the other children, learning‑wise. I realized that some kids knew a lot more than I did, and it was just, “Okay, well, I don’t know what I’m supposed to do. I don’t know why I’m in school, but I don’t know.”

I didn’t know that there was a life after. So after you graduate, you can start working, you can get married, you can have kids, and all that. I just went day by day, not really understanding a lot.

Family silence, denial, and wanting more information

I think it would have been nice to know a bit more. We’ve never really spoken truly about things. It was always if someone came by to visit, sometimes my mom would tell some stories to them, and that’s how I knew a bit more about myself or what happened when I was younger. But we never had an open discussion. It always felt like a closed door. So it would have been nice to have a bit more.

Also, knowing what’s happening, why things are happening like this. I think I was always left in the dark. That led me to denial when I was older, too. “Okay, well, everything is fine, it’s fine,” because when I was a kid, my parents didn’t cry or anything. They didn’t seem like they were upset. They just said, “Okay, it’s okay.” But I think that was just in front of me, and behind my back, they would probably say more than that.

Learning the word “cancer” and truly understanding it as an adult

I think that was more towards when I was a teenager. I think I knew the word when I was maybe an early teenager, but I didn’t really understand everything fully until maybe even adulthood.

I think that I really understood also because I was able to go to camp, and I was seeing other adults who were diagnosed as a kid and really able to talk to them and really understand a bit more. I think mentally as well, learning‑wise, it was easier for me to understand then, because I couldn’t really develop well even as a teenager. Maybe I thought I understood, but now that I’m older, I think it’s mostly when I was a young adult that I really understood, “Okay, this is happening, this happened, and now I’m continuing trying to survive this and understand and knowing that this happened when I was a kid, but now it’s still affecting me over 20, 25 years later.”

Denial, early colon cancer, and not being believed

I think I knew maybe when I was a teenager, I was more in denial because I was a little bit rebellious against the healthcare providers as well. Because of that, I had symptoms not of recurrence, but symptoms from colon cancer, and it turned out to be an early stage of colon cancer. But the doctor, my oncologist at the time in pediatrics, didn’t really believe my symptoms. Then, when I told her, “Okay, then I don’t have this symptom,” she would say, “Okay, well, you did tell me you had that.”

So it was very confusing, and I was very in denial, like, “Okay, maybe I’m just making things up.” But it was a pretty big symptom, and I knew that symptom. I had some bleeding in my stool for months, and I felt like, “Okay, maybe it’s not as important as I think it is.” When I was older, I got sick as well. I kept having some stomach issues, so I think from then on I knew, “Okay, I’m still affected by this. I’m still affected by the chemo, by the radiation, and by the surgeries from when I was younger.”

So it was an early stage of colon cancer, and that’s because I got sick later on. Eventually, I did get a colonoscopy. They finally figured out it was that, and they were able to remove it. But my oncologist at the time didn’t believe me or didn’t really help me at the time.

I’m not sure. She asked if I had any bleeding in my stool or anything like that, and I said yes. Then I said, “It’s a bit too much information,” but she asked if I was bleeding in my stool or just when I’m wiping or anything, and I said both. She said, “It can’t be both, so you have to pick one.”

Then I told her, “Okay, well, it’s none,” and then she said, “Well, you told me it’s both, so which one is it?” I don’t remember what it was at the end, but it was just a weird encounter. I haven’t seen her since then. I didn’t want to see her again. I was 17.

ER experiences, advocacy, and pain

I think I definitely felt disappointed, but I wasn’t shocked because there were a lot of times before that that doctors either ignored me or didn’t believe me. I really thought that was going to be the norm from then on.

So now every time I go to the ER, I make sure I’m in like a ten‑out‑of‑ten pain before I go, and I make sure I have my mom or a friend with me, because if I go alone, I get treated really poorly, and I’m in too much pain to advocate for myself.

My mom usually has the energy to push, and she’s been through it with me, so she knows how to push doctors.

Early colon cancer removal and initial denial

I think that was in 2018. I was probably around 18 or 19 during that time. It was either 2018 or 2019, but it was a very early stage, so they were able to remove it during the colonoscopy.

When the doctors told me about that, my instinct was, “Okay, it’s gone, so everything is good now.” I think I was still in denial, not understanding that now there’s a very big chance of recurrence and things like that. I find that I’m very lucky that that one was caught really early, and I just needed a small surgery to remove it.

G‑tube, long‑term pain, and waiting for help

Obviously, I can’t remember the very early years. I do remember being around four to ten years old. In those years, I knew I had a lot of appointments, and I was in school.

I also had a G‑tube, and I’m struggling with the pain from that till now. I’m supposed to go to the pain clinic, but I’ve been waiting for eight months now, and I’m still on the waiting list for that.

Feeling like a burden and hearing my mother’s pain

I think with my mom telling the story a few times, and she did have a few speeches at her school since she’s a teacher as well, just knowing that when she tells the story that she’s in pain, she’s still in pain, or she’s still tearing up — and that’s been over 25 years now — I feel a bit of a burden. I felt that a long time ago as well, and now I’m trying to heal from that.

I definitely do feel guilty putting her through all that, even though I know it’s not my fault. I know she’s been there a few times, at least. She’s always been on my side in the hospital. I’ve been in the hospital, I think, about a year at a time, and sometimes in and out, and I’ve been in the ER over 300 times at the children’s hospital.

She mentioned how it was difficult to go through treatments because I wasn’t eating, and that’s when they decided to put the G‑tube, the feeding tube. I had that for 12 years. A few times, I was in a Code Blue situation, so she mentioned how scary that was.

Since I was young, for radiation, I had to be put under. They don’t do radiation in the children’s hospital, so in Ottawa, we have the children’s hospital, and there’s a tunnel that goes to the General, which is for the adults. They had to run all the way there to do the anesthesia, get the radiation done, and run back before I woke up.

She mentioned that even from a young age, I had a very high tolerance to pain and a very high tolerance to medication. Sometimes I was in a Code Blue because they gave me too much morphine, even though I wasn’t falling asleep or acting the way the anesthesia was supposed to act.

Cancer camp, Young Adult Cancer programs, and therapy

Now it’s much better. Being able to go to the Ottawa Cancer Foundation and YACC (Young Adult Cancer Canada) and the cancer camps as a child and as an adult really helped. YACC as well, because there are some conferences, and they talk about things like that. It was nice to see that those are normal things that people who are surviving or have survived cancer feel too, that you’re not the only one.

It’s nice to see that in the community. It helped a lot. I started doing therapy as well to help with things like that and to heal from the past. I hope these videos help, too, for other people to know that they’re not alone and that there are a lot of things we don’t talk about or doctors don’t tell you about. Those other survivors really — it felt kind of like a relief, like, “Okay, okay,” and there are also strategies to try to understand and try to heal from it in Canada.

Finding connection with other survivors

I think just meeting those people, it felt so easy to meet them. There was just this type of bond that’s already connected, and this type of empathy. You don’t need to say anything, but you just understand each other. It was so nice to meet all these people.

For years, I thought I needed to get over this — these fears, everything like that — because it’s been so long since I had cancer and this shouldn’t be affecting me now. But knowing and seeing them, it really did really well for me.

Bowel obstruction, polyps, and finally getting coordinated follow‑up

When I was an adult, maybe in 2022, I had another obstruction in my bowel. A non‑surgical oncology doctor from gastro came in to see me and started to really follow up with me, really started the ball moving because I kept having a lot of polyps reappearing every year. I keep having colonoscopies every six months to a year and endoscopies as well.

She really pushed the ball to see genetics and to see another gastro as well, to keep following up, and just to see all these different doctors to really keep me in the loop. I hadn’t had a good follow‑up since I didn’t want to see that oncologist as a child, and that oncologist as a follow‑up in adulthood, too. I didn’t want to see her.

Genetic testing, Bloom syndrome scare, and mosaic variegated aneuploidy syndrome 3

In the genetics department, they were able to assess me, and they were able to test for a genetic disorder for polyps in the colon, but it tested negative. They kept doing those tests. They really thought I had Bloom syndrome. So I did the bad thing of searching it up and noticing how little the life expectancy is, and because they were pretty much 99% sure I had that, they kept retesting me when it was negative.

Because there was a low life expectancy, for, I think, half a year, I was thinking, “Okay, I’m still in school, so I don’t really need to get a job because I’m not going to live that long.” I wanted to get more into jiu-jitsu, really get better at it because I like that, and to spend time with my cats and maybe travel if I can. That was really my goal. But then they noticed it was something else, and it was called mosaic variegated aneuploidy syndrome 3, and there’s just a high risk of cancer, and there’s no danger to life expectancy.

Then my perspective kind of changed, like, “Okay, so I actually need to get a job, and I need to figure out everything else, but also monitor my health,” because this year has been a bit more downhill. I’m going to live longer than I expected, which is nice to know, but I need to rethink, because I was trying to accept death at an early stage. I’m happily living now. I’m trying to do the best I can to do what I can.

My thoughts on genetic testing and Wilms tumor features

For me, it was a bit of a shock, because usually it’s kind of odd to have cancer below the age of two or even below the age of five. So I feel like they should have or would have tested me then. But at the same time, the genetic testing that I did at the end, because they realized it’s definitely not Bloom syndrome, is like a sister disorder to it, because they have very similar traits.

It was due to Wilms tumor and also short stature, learning disability or developmental disability, microcephaly, and trouble feeding, which are all things that I had as I was diagnosed with cancer. So all these things, it just seems like it would have been a normal thing to do to test. But the testing pool for MVA3 was still being developed, so there are still some false negatives. I was just really lucky.

Yeah, that’s what I’m thinking. It’s nice to know. Right now, I’m still having a lot of stomach issues, but I know what’s going on, and I’m still following up.

My experiences at different ages and PTSD from procedures

I think it was a mix when I was very young. I didn’t know anything, so I was just like, “Okay, okay.” My mom would play games with me when I was waiting for appointments. The floor was very colorful, so I had to jump from one color to another, and they were fun games. I did have this one scan that I was really terrified of, and I think even as an adult, I’m scared of it. I noticed with therapy that I might have a bit of PTSD from that and the sound of it.

I also had a favorite nurse. I could only get blood work with this nurse and no one else. Anyone else — it was no. I would throw a fit.

As a teenager, I think mentally everything was just… as a teenager, your mental state is a bit wonky. It was very difficult back then, because I think I was also rebellious. As an adult, I think I had one good encounter because the doctors I followed up with were really nice, but my ER visits were always very difficult.

Minimization of pain and struggles in the ER

I’ve never felt believed. I always felt like I was just a child being a spoiled brat and just whining because of menstrual pain. That’s what doctors would ask me all the time, like, “Are you on your period?” if I came in with stomach pain, which is all the time, I had obstructions. They would always say, “Do you have menstrual pains? Do you have your menstrual cycle right now?” It was hard because I’m not going to go to the ER just because of that.

Also, because I have a high tolerance to pain, it’s difficult to demand more pain meds, even for my mom to do that. In my last visit, I was very sleep deprived, and I was in a lot of pain, but they were not giving me the amount of painkillers I needed. I was a bit delusional too because of lack of sleep and pain. I told my mom, “Okay, we’re leaving because they’re not helping, they’re not doing anything.” Eventually, my mom was able to get someone from anesthesia, an anesthesiologist, to try to help me with the pain.

There’s always this type of situation. It was never very smooth. If it was, there was just one time it was good in the ER, but when I went to the floor, it was a disaster. Other times it’s the opposite way around. It was just difficult to go through the medical system in that case.

Early signs as a baby and port, surgery, chemo, and radiation

That’s what my mom would say. They would say that I kept rocking myself, throwing myself on my back, and the doctor said that was my way of trying to relieve the pain from the tumor.

I had my port installed first. My port was actually under my armpit instead of on my chest by accident. Then I’m not sure what happened first, either chemo or surgery. I believe it was surgery first, and then chemo, and then radiation.

No recurrence, just monitoring.

Self‑advocacy, mental health, and healing from childhood cancer

I think I’d like to say how important it is to try to advocate for yourself, because I always thought, “Okay, I’ll listen to the doctors,” but also, you know what’s best for you. You know your body the most.

In the mental health aspects, I’m seeing a therapist right now, but especially if you’re diagnosed at an early age, I would recommend, the earlier the better. I think I’m still trying to go through some of the trauma from my cancer journey when I was a kid, and also recognizing that it’s there, even though I thought I was just a kid and didn’t really notice until now.

I’ve learned from therapists that there’s someone else who was diagnosed at an early age, and they mentioned how they have some PTSD from sounds as well, but they were so young that they don’t really see or notice why. It lives through your body as the pain lives through your body. I think it’s very important, if you’re not going to therapy, to talk to someone you can relate to or do some exercise or something to help yourself.

Thank you for sharing your story, Maria!

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A Creative Life, Interrupted: Red’s Experience With Tongue Cancer

Post author By Chris Sanchez
Post date January 7, 2026
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January 7, 2026

A Creative Life, Interrupted: Red’s Experience With Tongue Cancer After Losing 40% of Her Tongue

Working as a wig attendant and makeup artist, Red had just begun embracing her creative dreams with a close-knit theater community when her health took a dramatic turn. She was in the middle of building a life she loved when a small canker sore on her tongue refused to heal. What first seemed ordinary became the start of an experience that would lead to a tongue cancer diagnosis that changed her life, tested her instincts, and forced her to examine her sense of self.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez and Jeff Forslund

As the sore on her tongue stubbornly refused to heal, Red was initially net with medical dismissal but trusted her instincts and pressed her doctor for a referral to a specialist. That one moment of self-advocacy in that first appointment led to a specialist appointment with an ENT where she finally received a frightening diagnosis: stage 3 tongue cancer. Moreover, the news arrived in the midst of a hectic photoshoot.

Rather than yielding to fear, Red channeled her energy into connecting with friends, colleagues, and even cast members at the theater, who were more than happy to support her and lend encouragement. She also found symbolic and creative ways to cope, including naming her cancer “Carl” for privacy and maintaining humor and compassion throughout her experience.

Surgery followed; doctors removed 40 percent of Red’s tongue and performed reconstructive surgery afterwards. Recovery was demanding, involving rigorous procedures to save her speech and swallowing abilities, physical therapy, dietary changes, and pain management. Eventually, she also underwent radiation treatment. The unwavering support of her medical team, family, and fellow artists made a difference throughout her experience. Karaoke nights, theatrical send-offs, and simple acts of care became touchstones of hope and solidarity before surgery and after.

Returning to work after treatment marked a new chapter in Red’s life, highlighting the emotional and psychological adjustments required after surviving tongue cancer and similar kinds of cancer. She emphasizes the critical role of self-advocacy, resilience, and the right to appear and feel confident at every stage, whether through creativity, community, or self-care practices. Red’s tongue cancer experience reminds others that healing is a lived, ongoing process that is personally defined by each patient.

Watch Red’s video and browse the edited transcript of her interview below to learn more about how:

Advocacy is vital: Trust yourself and push for answers if something feels wrong
Creative outlets like makeup can empower recovery and restore confidence after major life changes
The support of community, namely, family, friends, and colleagues, provides essential strength during tough times
Healing is not linear; recovery from cancer includes both physical and emotional milestones
Red’s transformation involved reclaiming her confidence, advocating for herself, and finding a new purpose

Name: Red S.
Age at Diagnosis:
- 35
Diagnosis:
- Tongue Cancer (Squamous Cell Carcinoma of the Tongue)
Staging:
- Stage 3
Symptom:
- Persistent tongue ulcer that increased in size
Treatments:
- Surgeries: partial glossectomy, flap surgery
- 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.

Transcript of Red’s Interview

Hi, I'm Red
How cancer arrived in the middle of my dream job
The hospital bed stretch video that connected me to my crew
Being a young non-smoker with rare oral or tongue cancer
The “canker sore” on my tongue that turned out to be cancer
Getting the biopsy and the phone call that confirmed cancer
We nicknamed my cancer “Carl”
My 10-hour tongue cancer surgery and flap reconstruction
Walking up from tongue surgery and already speaking
Learning to swallow again and choosing radiation
Daily radiation, crushing fatigue, and singing karaoke again
Returning to the theater after tongue cancer surgery
Learning to love my scars and advocate for my body
What I want others to know

Hi, I’m Red

I was diagnosed with oral cancer, specifically tongue cancer, in 2025.

And I am from all over, but I currently live in Stratford, Ontario, Canada. I am a dual citizen, so I’ve lived all over the US as well as up here in Canada.

Currently, I am a wig attendant as well as a makeup artist with the Stratford Theater Festival. I actually did a career change; before that, I was working in the TV and film industry with a large multimedia company, Disney, for over ten years, working at ABC News, ESPN, Disney Channel, and Disney Junior on the corporate side of things.

I’ve always considered myself to be more of a creative individual. After going through some other hardships, I reevaluated what I wanted to do with my life and realized my passion really is makeup and storytelling, and the way that we use makeup to tell a story. It’s not just a glamorous vanity thing; it gives people so much more than that.

I do glamor makeup, theater makeup, and special effects. I create scars and burns and can recreate all of that. It’s kind of funny that after everything I went through, I now have the best reference photos I could have: my own. It has been a wild journey, and to get this diagnosis right when I finally got to a point in my career where I thought, “I’m here, I’ve made it, this is the dream, I’m living it,” and then cancer showed up, it was a lot.

How cancer arrived in the middle of my dream job

There is never a good time to get cancer. There’s never a perfect schedule where it’s right on time. No one wants that, ever.

It weirdly did the work for me, which I wasn’t expecting, because of the community I was in and the location I was in. I had family support, medical support, and I was able to see specialists very quickly because it is such a rare thing.

I was very lucky. Even by US standards, I probably still would have been waiting much longer. The support from my theater community was something I never anticipated, especially because it was my first season. I had only been working with people for a short time, but when you are doing their wigs and makeup, you work very closely. People rallied behind me, reached out, and sent me so much love and support that I still could probably cry about it.

The hospital bed stretch video that connected me to my crew

Part of our warmups with the crew was stretching our bodies. We were working on Robert Lepage’s Macbeth, set during the biker wars in Quebec, and there are literally motorcycles going around on stage and backstage. We would stretch out our hands, twist, and move as though we were revving a motorcycle to loosen our wrists.

When I was in the hospital, they told me I had to stretch in my hospital bed. I asked my dad to record me doing our “rev the motorcycle” stretch. He thought I was on medication and had no idea what I was doing. Then I got a message from my crew where every single person was doing the same warmup and saying, “Hi, Red, miss you.” It was silly but incredibly memorable and meaningful.

Being a young non-smoker with rare oral or tongue cancer

Oral cancer itself is rare. From what I read, about 1% of annual cancer diagnoses are oral-related, and that includes the whole mouth. Tongue cancer specifically is even rarer. For someone my age who is not a smoker and doesn’t fit the usual risk profile, it’s very unusual.

We don’t know why I got it. It wasn’t HPV-related, it wasn’t smoking-related, and although I have one relative who had cancer in his jaw, that is different. It remains a mystery, and part of why I want to share what’s going on is that it is occurring in younger people.

People need to get checked and tell their dentist if anything seems off. I just had a canker sore I thought wouldn’t go away.

The “canker sore” on my tongue that turned out to be cancer

At the beginning, I noticed a bump on the left side of my tongue, by my teeth, and I kept hitting it. It was really annoying, and I didn’t know why it was happening. I had just accepted the job with Stratford and was still working at Sephora. One of my managers, who was interested in that kind of thing, looked at it and said, “Yeah, that is weird. I don’t know what that is.”

The mouth heals quickly if you burn your tongue or bite it, but this bump wasn’t going away. Months into my job, I realized that now that I was more settled, I needed to do something because it was starting to hurt. I began avoiding certain foods because they hurt to eat. I went to the local hospital in Stratford and, because there was no walk-in clinic, I went to the emergency room. The doctor looked at it and said I had bitten my tongue.

I am not usually confrontational, but something in me pushed back. I told him it had been like that for months, and there was no way this was just a bite. If it were a bite, maybe there was an infection, but it was definitely something more.

He did not seem to like that I pushed back, but he referred me to an ENT specialist.

Getting the biopsy and the phone call that confirmed cancer

The ENT was fantastic. She said we should do a biopsy because something odd was happening, but she kept saying how young I was (I’m in my 30s), so it couldn’t possibly be cancer in her mind. Still, she booked the biopsy.

On the opening night of my musical, Dirty Rotten Scoundrels, I was in the middle of a fashion photo shoot for Pride Month. I was doing hair and makeup for friends of mine, working with photographer Neil Graham, and I knew I had a show later that night. In the middle of the shoot, my doctor called and said, “It is cancer.” I was sitting down, and it still felt like the floor gave out from under me.

Who gets told it’s cancer in the middle of a photo shoot before a show? I had to go back into the shoot knowing this, but in a way it worked out beautifully.

My friends and colleagues were there to comfort me immediately. They asked if I wanted to stop the shoot, and I said no, we needed to keep going.

The emotions that came out in that photo shoot made it really special because we created something beautiful out of something awful.

We nicknamed my cancer “Carl”

On the way back to Stratford, I stopped at a thrift store and picked up a beautiful dress I had been eyeing for the opening night party. I had thought it might be “too much,” but after that phone call, I decided if there was ever a time to be “too much,” it was that night.

I told the people who were at the shoot and my immediate team, but I did not want to throw off opening night for everyone else. They were excited and ready to perform, and cancer had already affected me; I didn’t want it to affect everyone else yet.

We started calling my cancer “Carl,” so we could talk about it in front of others without alarming them. We would say things like, “How’s Carl?” “He’s such a jerk,” or “He’s not so bad today,” as our code.

My 10-hour tongue cancer surgery and flap reconstruction

My surgery was what they call a flap surgery. They removed up to about 40% of my tongue to take out the cancerous area. They made an incision in my neck to remove lymph nodes for testing, and because I was already stage 3 squamous cell carcinoma, the staging was serious.

They also used my own body as a transplant. They took tissue from my arm, along with the veins, and used it to reconstruct my tongue and reattach it to my neck. I now have about 60% of my original tongue left, with taste buds that are slowly coming back.

I learned the hard way that my taste buds had returned when a shot that used to taste like water suddenly burned again.

The surgery feels like something out of science fiction. I had staples running up my neck, wires coming out so they could monitor the tissue, and tubes they plugged in that made ultrasound-like sounds to check blood flow. Hearing that living-tissue sound and realizing, “That’s my tongue,” was surreal.

Walking up from tongue surgery and already speaking

After surgery, I had my arm bandaged, staples in my neck, wires, drains, and an NG tube. The NG tube was actually the most painful part because they placed it on the side of my incision to avoid blocking my airway if the other side swelled. Every time I swallowed, it hit the incision, and the sharp pain became all I could focus on.

They told me I might need a tracheostomy and that I would not be able to speak for a while. I worked with a speech pathologist and had a communication board ready. But when I woke up from surgery, I saw my parents and said, “Mom.” Everyone was shocked that I was speaking clearly enough to be understood.

We still don’t know why that happened. I joke that my own body tried to shut me up, and even that didn’t work. I have always been a yapper, and apparently, even major tongue surgery couldn’t stop that.

Learning to swallow again and choosing radiation

The first focus after surgery was on swallowing. To get the NG tube out, I had to prove I could swallow, but swallowing with the tube in hurt so much that it became a catch-22. My team realized the tube was holding me back, cut the sutures from my nose, and pulled it out, which was not an experience I would recommend.

We started with liquids, then purees, soups, and protein shakes, and I had to relearn biting and chewing. I did tongue exercises with my speech pathologist focused on mobility and strength, and I got up to walk even though I felt like Frankenstein’s monster after a ten-hour surgery. I still do physio for my shoulder because my arm had to stay in one position for so long.

They removed 51 lymph nodes, and one tested positive for cancer. My team explained that while the amount was small, tongue cancers can move quickly. The options were to wait and risk it spreading or to do 30 sessions of radiation, Monday through Friday.

I told my doctor, “Kill it with fire,” and we moved ahead with radiation, even though they warned it would be hard and would affect my mouth and swallowing.

Daily radiation, crushing fatigue, and singing karaoke again

For radiation, I drove from Stratford to London, Ontario, Monday through Friday, a little over an hour each way, for about a 15-minute session. The treatment itself feels like getting an X-ray; the hard part is the cumulative side effects afterward. The team was wonderful about playing music for me; sometimes spa-like Zen music, sometimes upbeat, depending on my mood.

The fatigue hit like a wall. I’m someone who normally operates on very little sleep, so suddenly sleeping a full eight hours was wild. My tongue swelled, and it still does on some days. There are days, like today, that are not my best because of the swelling, but then there are days where I do big things again, like singing karaoke for the first time since surgery.

Before surgery, I hosted a big karaoke night called “Red Sing Out.” I invited people casually, thinking only my small team would show up, and we didn’t even have a real karaoke machine, just music and phones with lyrics.

Instead, stars from the shows I worked on showed up, and they could actually sing, which is so unfair at karaoke. We had a tongue-shaped cake that said “Goodbye, cancer,” and we all cut into it together. I opened the night with “I Will Survive,” and we all sang it together again to close the night.

Returning to the theater after tongue cancer surgery

Everyone has their own timeline. If I had not come back for the rest of the season, no one would have faulted me. But I had worked so hard to get there, and the community and the work meant so much to me that coming back gave me something to strive for.

I focused on exercises, stretching, rebuilding stamina, and being physically able to do a fast-moving job with stairs, crossovers, and quick changes. The part I didn’t anticipate was the emotional impact of coming back to the same shows after being so changed. Shows like Anne of Green Gables, where a character dies in a heartbreaking scene, suddenly hit me much harder, even though I’d seen them many times.

Almost everyone at the theater was incredibly supportive. One person treated it as though I had been on vacation and made comments like, “Did you enjoy your time off?” That was frustrating, but some people simply don’t understand.

The positive support far outweighed that; performers and crew clapped for me, hugged me, and shared their own stories of surgery and illness.

Learning to love my scars and advocate for my body

Some people don’t know how to handle someone going through hardship. One colleague would stare at my scars, make faces, and say they were gross. I like my scars; they tell a story and remind me of what I have been through and how I got past it. It is all about perspective.

I have been through trauma before cancer; I am part of the MeToo movement and an assault survivor. Therapy helped me a lot, and I genuinely believe everyone, especially people dealing with cancer, can benefit from therapy. Both experiences involve relearning your body, dealing with inappropriate questions like “What did you do for this to happen?” and refusing to accept victim-blaming.

Making jokes is how I cope, but that doesn’t mean it’s right for everyone. For me, working toward coming back to the work I love, helping tell stories, and telling my own story helps me process everything.

What I want others to know

There are so many big and small moments that come from a journey like this, and there is no wrong way to handle it as long as you are not hurting yourself or others.

For some, putting on makeup again feels wild; for me, it was part of feeling like myself. I have a photo where my arm is wrapped, I’m wearing a turban to protect my incision and cover hair loss, and I’m in makeup. People sometimes assume hats always mean chemo, but there are many reasons people wear them.

I’m working on projects to help people get the hats they need and to get involved with organizations that help patients with makeup and skincare. Sometimes what helps you feel your strongest is as simple as a moisturizer that makes your skin less dry or a red lip that makes you feel like yourself. Other times, it’s cosplay, horror, or body gore looks that help someone reclaim their body.

As a makeup artist, I try to make beauty tools as accessible as possible. Before my surgery, I taught at a school for the blind because people often assume blind people can’t wear makeup, but they absolutely can if they want to. The same goes for any patient: whatever you need to feel better in your own skin and stronger in your journey, if there is any way I can help, I want to help.

Thank you for sharing your story, Red!

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Stage 4 Cardia Cancer Transformed Luwen’s Life and Perspective

Post author By Chris Sanchez
Post date January 5, 2026
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January 5, 2026

Stage 4 Cardia Cancer Transformed Luwen’s Life and Perspective

Cardia cancer, a rare and aggressive cancer at the junction of the stomach and esophagus, fundamentally changed Luwen’s day-to-day life, career aspirations, and connection to her body and community. Diagnosed in Paris in December 2024 after months of misattributed symptoms, her experience reveals the often-overlooked complexity and adversity surrounding late-stage cancer diagnosis.

Interviewed by: Keshia Rice
Edited by: Chris Sanchez

Immediately preceding her diagnosis, Luwen balanced the challenge of beginning her career in theater with daunting physical symptoms, including persistent back pain, chest burning, and a profound sense of unease. As her symptoms intensified, she underwent multiple consultations and procedures. The French healthcare system posed its own hurdles, involving both public and private pathways, and required out-of-pocket payments until her diagnosis of cardia cancer, a kind of stomach cancer, categorized her illness as a long-term condition eligible for government coverage.

The emotional toll of stage 4 cardia cancer was magnified by isolation, as Luwen navigated both the diagnostic process and her mother’s concurrent battle with breast cancer, while extended family remained abroad. Self-advocacy proved essential; despite repeated dismissals from medical professionals and friends attributing her symptoms to stress, she persisted, ultimately insisting on crucial tests that revealed the true nature of her illness.

Treatment transformed every aspect of Luwen’s life. Eight months of chemotherapy and immunotherapy followed by a major surgical resection altered her physical relationship with food and her body, requiring new dietary habits and a lasting regimen of medication. The physical challenges were matched by emotional transformation; what mattered shifted from professional achievement to peace and well-being.

For others living through stage 4 cardia cancer, Luwen’s story offers important lessons: trust in oneself as the expert of one’s body, the necessity of persistence within medical systems, and the possibility of redefining one’s priorities after illness. Her experience is a testament to the power of self-advocacy and adaptability, and to the meaningful changes that can result from even the most difficult diagnoses.

Watch Luwen’s video above and read through her edited interview transcript below. Both will provide insights into why and how:

Advocacy matters: being persistent to get the correct diagnosis is vital, especially when symptoms are minimized
You are the real expert on symptoms; trust yourself when you know something’s wrong
Major illness like cancer often forces patients to reconsider what matters most in life
Support networks such as family, friends, and therapists, help patients endure treatment and uncertainty
Transformation is possible: Luwen’s priorities shifted toward peace, self-care, and authentic living

Name: Luwen S.
Diagnosis:
- Cardia Cancer
Age at Diagnosis:
- 25
Staging:
- Stage 4
Symptoms:
- Backaches
- Heartburn and acid reflux resulting in vomiting bile
- Fainting spell after eating
- Fatigue
- Inability to swallow
Treatments:
- Chemotherapy
- Immunotherapy
- Surgeries: esophagectomy, partial gastrectomy

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.

Transcript of Luwen’s Interview

My name is Luwen
My initial symptoms
Navigating the French healthcare system
I processed everything while I was alone
My body broke down, and I doubted myself
My persistence led to second opinions and the key endoscopy
My treatment experience
I had surgery, and how I recovered from it
Moving forward, and my new priorities
How I coped with the hardest moments
Lessons for young cancer patients
Healing, recovery, and looking forward
My final reflections

My name is Luwen

I was diagnosed in December 2024 with stage 4 cardia cancer. The cardia is basically the junction between the esophagus and the stomach. I was diagnosed in Paris, and I live in Paris.

I had just finished university and was getting my first job in theater. I’ve always had an interest in theater, and I was really happy because I was working on this big production. I remember it because my cancer basically started to grow at the same time that I got my job. So, during the summer of 2024, I was very stressed. I was trying to find a job after my internship and couldn’t find one. As I interviewed for many positions and eventually got the job I wanted, my symptoms worsened.

Alongside this, my family lived in China, and my mother was diagnosed with breast cancer in November, a month before my own diagnosis. I did a lot of back-and-forth travel between China and France, while my grandparents lived in America, so I was used to traveling. But, yeah, that was pretty much my life before I got cancer.

My initial symptoms

It was really strange because I started with back pain. Basically, I had metastasis along the spine, and those were my first symptoms in the summer of 2024. It started in June. I remember this because I was at a Buddhist retreat, sitting cross-legged all day for a week, so I thought it was the retreat that had caused the pain. I started to take ibuprofen and paracetamol, hoping to ease the pain, but it didn’t help.

In August, I developed chest burn, which I didn’t know was acid reflux at the time, and which I later learned to name. That was my mistake: I called it acid reflux, so the doctors just stuck with that diagnosis, saying there was nothing else wrong. I was misdiagnosed for six months, going from doctor to doctor, always being told I had nothing. All the while, my back pain and chest burn continued to worsen.

I remember once in September, it was the first real alarm in my head. I woke from a dream where I was on a sterilized hospital table, doctors trying to get something out of my stomach, and they couldn’t. I woke up to realize the pain wasn’t a dream; it was very real. That’s when I realized I really needed to see a gastroenterologist, but the first one I saw was really bad and misdiagnosed me.

Navigating the French healthcare system

In France, you typically have a primary physician. I saw mine at the end of August, after I’d started my new job and when my symptoms had worsened. One night, I had a really bad hunger pain in my stomach, and I knew that eating would ease it. So, I went to eat, then fainted, which had never happened to me before. I was lucky I didn’t hurt myself.

After that, I saw my primary care doctor, who said I needed a physiotherapist for my back, and that the chest burn (acid reflux) could wait until November for a gastroenterologist appointment. So, I started physiotherapy, which didn’t help. In September, after continuing to wake in pain, I realized I couldn’t wait any longer.

France has an app for scheduling doctor appointments, but it’s hard to know which doctors are good; you have to check reviews online or hear about them through friends. No one around me knew a reputable gastroenterologist, so I chose from the limited, less-recommended options available on short notice. Appointments with specialists are particularly hard to get.

There’s public healthcare, where you don’t pay out of pocket, and private practitioners, who set their own rates. I paid my private gastroenterologist €80 per visit, three times total during this process. I also returned to my primary care doctor about ten times in three or four months, but he couldn’t figure out what was wrong. I underwent many scans and imaging, some of which I had to pay for, depending on whether it was public or private healthcare.

I was really lucky that after my diagnosis, everything switched to 100% public healthcare. I didn’t have to pay for my treatment. But during the diagnosis period, I spent about €2,000 to €3,000 on doctors and scans. In France, once you’re categorized as having a long-term disease, anything related to it is covered by the government. So, after diagnosis, cancer care was paid for.

I processed everything while I was alone

You have to keep in mind that I was alone in Paris. My parents were in China, and my grandparents were in America.

I was navigating all of this by myself, getting more stressed with my job, when I got the news that my mother was also sick. It was a lot to process alone.

It was weird, trying to get an answer while everyone around me kept saying, “You’re insane, you’re making this up, it’s just stress.” I heard that so many times that eventually, I began to believe it myself, despite knowing deep down it was more than stress.

I even started doubting my own symptoms because of all the repeated dismissals from those around me.

My body broke down, and I doubted myself

At work, my boss was running a show and an exhibition, and I was supposed to go to Marseille for two weeks for my job. I stayed for just two days before my body gave out.

I had driven myself to the breaking point. Everything happened so quickly that, only in January, right before starting treatment and after returning from Christmas holidays, did I realize just how hard this all had been to take on alone.

I don’t think I trust the health system. Even though I am cured, thankfully, it’s hard for me to see a doctor and believe they are telling me the whole truth or getting to the root cause. In my case, my gastroenterologist just treated the symptoms (acid reflux) with omeprazole, which masked the symptoms and delayed realizing the underlying (cancer) problem.

My persistence led to second opinions and the key endoscopy

When my body finally broke down, I was sent back to Paris and put on sick leave. That week, I saw about four gastroenterologists, but for some reason, none wanted to give me an endoscopy. I had known since October that I needed one, but I wasn’t taken seriously.

I finally texted a friend, who knew a really good private gastroenterologist. I emailed him all my symptoms on a Sunday night and was lucky; he let me come in the next day. I decided I wouldn’t leave without an endoscopy scheduled. I had to exaggerate my symptoms, saying I couldn’t swallow water or eat (even though I could still drink), just to be taken seriously.

At my endoscopy, the doctor said, “Don’t worry, it’s probably nothing; we’ll just give you more omeprazole.” I insisted that omeprazole hadn’t helped me. He told me he’d call after the procedure to say everything was fine, but when I woke up, he was there in person. He said, “Do you have a minute? I have bad news for you.”

Later, he returned to my room and told me, “You have a lesion; it also has an ulcer, and it might be cancerous.” That was the first time I heard the word cancer regarding myself. I felt so relieved: “Oh my God, I’m not crazy. I’m not making things up.”

From there, everything moved very quickly. Doctors aren’t technically allowed to tell you outright that you have cancer, so he just said, “It might be cancerous.” But he made sure all tests happened within a week, which is rare for the French system. My endoscopy was on December 5th; my first meeting with my oncologist was on December 16th. The weekend before that, my friend from the UK came to stay with me because I was so stressed.

When I was finally able to process information, I realized how serious this was: scans, blood tests, a glowing spot in my stomach. I didn’t even know what cardia was until I looked it up. Everything fell into place piece by piece.

My treatment experience

It got quite bad before I began treatment. I was in constant pain, couldn’t eat or drink, and was losing weight week by week. I don’t like to say I stared death in the face, but it did feel close. During this time, after my diagnosis and before starting treatment, I returned to China to be with my mother, who had just started her own breast cancer treatment.

Having my mother go through chemo ahead of me meant I had someone who understood each step. I knew how to pack a chemo bag, what to expect, and how symptoms might develop. I was relieved to learn I wouldn’t lose my hair.

My first chemo was the worst. I was so sick I could barely get out of bed; I was overcome with nausea. Fortunately, my body responded well to immunotherapy. By the second chemo, I could almost eat normally again. By the third, I had regained some strength; by the fourth, scans showed the metastasis in my spine was completely gone. I had chemo and immunotherapy for eight months, and the cancer was gone in six months.

I had surgery, and how I recovered from it

After eight months of chemo, I was cancer-free, but we weren’t sure it was totally gone. Surgery (esophagectomy) was needed to remove the cardia and ensure there were negative margins. This meant removing most of my esophagus and a third of my stomach.

Now, my stomach is higher, and I don’t have an esophagus. Food falls directly into my stomach and then into my intestines.

Learning how to eat after that is difficult. I had surgery on September 8th, and as of now, I’m still recovering. I’ve lost about 10 kilos (~22 lbs). Eating requires extra care; monitoring oil, sugar, and food quantities to avoid dumping syndrome, which causes stomach pain, nausea, and diarrhea when food moves too fast into the small intestine.

Despite losing weight and always having had a sweet tooth, I have to be careful now. The way my body processes food has changed, requiring lifelong meds for acid reflux. It’s challenging, but it pushes me to adopt healthier habits. My life, needs, and desires have all changed.

Moving forward, and my new priorities

Cancer has taken away a lot, but weirdly, it has given me a lot too.

I used to work as a theater producer, but lost the desire to continue due to the stress and ego management. What I want now is to be happy, peaceful, and healthy. It’s no longer about pleasing others; it’s about making myself feel good and putting myself first.

I am not on maintenance therapy; all treatment ended before my surgery. Now, I just get regular scans every three months, then every five, then yearly.

It is behind me in the sense that I don’t want to think about it, but surveillance and the reality of stage 4 cancer mean you never quite feel “cured.”

My biggest fear today is that what comes back could be worse: pancreatic, stomach, or lung cancer. The word “cancer” will always be a part of my life now.

How I coped with the hardest moments

During treatment, I often lost my mind. My mother came back to France to care for me while she was ill, and I cared for her too. Once, she had a kidney failure episode, and I rushed her to the emergency room; if I’d been 20 minutes later, she could have died. That was on Mother’s Day.

What got me through was calling my best friend to cry and having therapy. I was surrounded by personal and healthcare therapists.

Ultimately, it was the mentality of, “I don’t get a choice; I just have to keep going. You can cry all you want, but you have to do the next round of chemo.”

I was lucky that my treatment worked, which made it a little easier to endure.

Lessons for young cancer patients

I was 25 when diagnosed. Having cancer at a young age is often dismissed; people expect youth and health to go together. Being young and female, women’s pain is often minimized, so I had to exaggerate symptoms to be taken seriously. My oncologist told me, “You’re lucky; apart from the cancer, you are otherwise very healthy because you are young.”

Most patients I saw during chemo were in their forties or older. But statistics show more young people getting cancer, even if it’s still rare. The main thing I would tell other young people: you know your body best. If you know something is wrong, trust yourself.

Cancer taught me how to advocate for myself, how to say, “No, you are wrong; I am in pain.” If a doctor doesn’t listen, see someone else until you get an answer that satisfies you.

I didn’t really connect with any other young people with cancer at the same time. I mostly navigated it by myself, though I had friends, family, and a lot of therapists in my life. Illness sheds false friendships, but it also brings new, real ones closer.

Healing, recovery, and looking forward

Words like “recovery” and “healing” have new meaning for me now; they exist where before they didn’t.

When you’re young, you’re focused on chasing the next thing; when you fall off that hamster wheel, you realize you must learn a new way forward, and it isn’t just about health. It’s about building a life again after illness.

I hope I get to do the job I want; publishing and writing, maybe publishing a book someday. I pay more attention now to health, food, and exercise. It’s scary to start over, but exciting. There are so many new opportunities and people to meet.

Statistics were not on my side. My oncologist told me that if immunotherapy hadn’t been available, I would have had only 4-6 months to live. That made me realize how far medicine has come. I really did beat the odds.

Still, I feel I’m on borrowed time and need to enjoy it fully while I have it.

My final reflections

I survived; long story short, I survived. It was not easy, and I’m very tired.

I tell my best friend that if cancer does return, I’m not sure I want to fight it again, but we’ll see when we get there.

Hopefully, I will never have cancer again.

Thank you for sharing your story, Luwen!

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Andy G., Stomach Cancer, Stage 4 (Metastatic)

Symptoms: Stomach pain, back pain, chest pain, extreme exhaustion, shortness of breath after short walks

Treatments: Chemotherapy, immunotherapy
...

Alyssa B., Stomach Cancer, Stage 4 (Metastatic)

Symptoms: Fatigue, elevated resting heart rate, heartburn, difficulty swallowing, weight loss
Treatments: Chemotherapy, immunotherapy, surgeries (total gastrectomy; partial esophagus removal; bilateral oophorectomy and fallopian tube removal), clinical trial
...

Brittany D., Stomach Cancer, Stage T1b

Symptoms: Choking suddenly while eating and attempting to speak, neck and right shoulder pain, neck tightness, trouble swallowing certain food items

Treatments: Surgeries (subtotal gastrectomy, D1 lymphadenectomy, gastric bypass)
...

Camilla C., Stomach Cancer, Stage 4 (Metastatic)

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

...

Emily D., Stomach Cancer (Gastric Adenocarcinoma), Stage 4 (Metastatic)

Symptoms: Persistent postpartum stomachache, early satiety, difficulty swallowing, vomiting

Treatments: Chemotherapy, immunotherapy

...

Alyssa B., Stomach Cancer, Stage 4 (Metastatic) (Hospice Update)

Symptoms: Fatigue, elevated resting heart rate, heartburn, difficulty swallowing, weight loss
Treatments: Chemotherapy, immunotherapy, surgeries (total gastrectomy; partial esophagus removal; bilateral oophorectomy and fallopian tube removal), clinical trial
...

Tags Self-advocacy, stage 4, young adult

Hormone Therapies Lymphadenectomy Metastatic Neck dissection Papillary Patient Stories Radiation Therapy Radioactive Iodine (RAI) Surgery Thyroid Cancer Thyroid hormone suppression therapy Total thyroidectomy Treatments

Family, Loss, and a Second Chance: Valerie’s Metastatic Thyroid Cancer Story

Post author By Chris Sanchez
Post date November 27, 2025
No Comments on Family, Loss, and a Second Chance: Valerie’s Metastatic Thyroid Cancer Story

November 27, 2025

Family, Loss, and a Second Chance: Valerie’s Metastatic Thyroid Cancer Story

Valerie was diagnosed with metastatic thyroid cancer (papillary thyroid carcinoma) in January 2025 after a series of concerning changes in her body, including unexplained bruising, persistent weight loss, and extreme cold intolerance. Her first concern, had her previously-fought leukemia come back? And while these aren’t typical symptoms of thyroid cancer, looking back, they were early signs that something in her thyroid system wasn’t functioning normally. As a registered nurse and devoted family advocate, she drew strength from her loved ones while navigating one of the most challenging periods of her life.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez & Jeff Forslund

Valerie was concerned her symptoms could be attributed to her history of having had leukemia. But new tests came back negative. After an unrelated car accident and neck pain that was getting worse days after the accident, radiology colleagues recommended scans that revealed suspicious thyroid findings. The diagnosis of thyroid cancer, which was confirmed through a needle biopsy, brought news of a malignant form with a gene mutation associated with rapid progression and lymph node spread. Valerie’s support system mobilized: her husband returned home from a work trip, and her family rallied around her.

Valerie’s treatment was supposed to begin with a thyroid lobectomy, but it escalated to a total thyroidectomy when scans showed that the cancer had spread to her entire thyroid gland. While surgery margins were clear, subsequent bloodwork and imaging soon revealed that it had also spread to various lymph nodes, making further biopsies necessary and ultimately requiring lymphadenectomy and neck dissection surgery. Valerie encountered the possibility of voice loss and the need for radioactive iodine therapy. Side effects were difficult, including loss of taste and fatigue.

Throughout her experience, Valerie has remained proactive and reflective. She adjusted to the need for lifelong medication, adopted daily routines to ensure consistency, and processed layers of grief from infertility and family loss. She met each setback with gratitude and by focusing on small wins, thanks to her community and the comfort of advocacy. She now manages regular monitoring and medication while emphasizing emotional resilience, acceptance, and the power of patient support. Valerie’s experience offers a powerful lesson: with self-advocacy, support, and inner strength, patients can find meaning and healing even in the face of formidable illness.

Valerie’s video and the edited transcript of her interview provide key insights and lessons from her experience:

Early, persistent symptoms such as bruising and cold intolerance should always prompt a thorough investigation for thyroid cancer and similar conditions
Advocacy within healthcare, whether through using medical connections or self-advocacy, can accelerate diagnosis and timely treatment
Emotional and family support underpin resilience through the challenges of advanced cancer treatment
Lifelong management (such as thyroid hormone suppression therapy) is common after total thyroidectomy and can be a major adjustment
Healing is not linear, but finding moments of gratitude and hope is always possible, regardless of circumstance

Name: Valerie V.
Age at Diagnosis:
- 29
Diagnosis:
- Thyroid Cancer (Papillary Thyroid Carcinoma)
Staging:
- Stage 4
Warning Signs & Symptoms:
- Bruising
- Extreme fatigue
- Cold intolerance
- Weight loss
Treatments:
- Surgeries: total thyroidectomy, neck dissection, lymphadenectomy
- Radiation therapy: radioactive iodine therapy
- Hormone therapy: thyroid hormone suppression 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.

Transcript of Valerie’s Interview

My name is Valerie
Family, nursing, and what matters most to me
My early warning signs
Losing my son, and the car accident that changed everything
The scan revealed something suspicious about my thyroid
Hearing “You have thyroid cancer” at work
Telling my husband: “There’s no good kind of cancer.”
My surgery plan changed overnight from a half- to a total thyroidectomy
“You’re cancer‑free” — and then a shocking recurrence
“I don’t think anyone will touch you”: I had risky lymph node surgery
My high-risk neck dissection surgery and radioactive iodine
My PET scan results: “As of now, you’re cancer-free.”
My daily life after treatment: scars, pills, and small routines
The emotional toll on my parents and the burden of being a survivor
Grieving our son, infertility, and being forced to wait
What survivorship means to me now
My message to others living with cancer

My name is Valerie

I was diagnosed with metastatic papillary carcinoma [thyroid cancer] in January 2025. I’m from Houston, Texas.

Family, nursing, and what matters most to me

I am a big family person. I adore and I’m obsessed with my little family. But also my siblings and my parents and my in-laws, and the siblings I’ve gained from them. I love doing anything and everything with family. That’s probably what occupies my time most. If I’m not with my family, I’m at work. I am a registered nurse, and I just try to balance that whole nurse life and family life because they are very important to me.

I am probably most passionate about being present for my family and my patients. I love my role as a radiology nurse in interventional radiology and how it lets me support people at really vulnerable moments, but nothing compares to being with my husband and our dogs.

One of my favorite photos is probably a picture with my dogs, or of my dogs, or of my husband and my two dogs. Like I said, I’m obsessed with the little family that we’ve created. I am that person who is like, “These are my four children, these are my two daughters.” People think I’m crazy, or people love it. I don’t care.

My early warning signs

The only symptoms I had that made me suspicious that something was going on in my body started before the official diagnosis. I have had leukemia in the past, and I remember that I was bruising so much. It was so random. I would wake up with so many bruises. I went back into that mindset of, “Oh my gosh, is this leukemia?” It could have been a million things, but leukemia was at the top of my mind.

I went to my doctor because I had been experiencing weight loss. I had lost these 10 pounds that I could not, for the life of me, gain back. When you lose weight, it’s not like every time you’re begging to gain it back, but those 10 pounds were so tricky because I am pretty active. I also had extreme cold intolerance. I would be wearing four layers, with a heating machine at work. I could not control my body temperature.

When I went to the doctor, I initially said, “I think I have leukemia.” We did a leukemia workup, but did not check my thyroid. She came back and said, “No, you’re good.” I thought, okay, maybe this is just weird stuff, and I just have to live with it.

Losing my son, and the car accident that changed everything

Then I got pregnant with my son. He was stillborn. I gave birth to him at the end of December. Two weeks after that, as I was leaving my doctor’s appointment for my clearance postpartum appointment, I got into a car accident.

I work in radiology as a radiology nurse in interventional radiology. A couple of days after the accident, I went to work and told my team, “You guys, my neck is killing me. Something’s going on with my neck. I feel like there’s a lot of pressure.” They said, “Get yourself on the CT. Let’s scan you and do it all. Let’s get the X‑rays and the CT.”

I know I am so fortunate and blessed to be in that position. I know it’s not like that for every patient. Typically, with thyroid cancer, you are advocating to the ends of the earth just for someone to scan you or take you seriously. After I did that CT scan, I went to the radiologist and asked if he had time to look at it really quickly, to see if I had any fractures or whiplash.

The scan revealed something suspicious about my thyroid

He immediately pulled up my scan and said that my thyroid did not look good. I asked, “Can you elaborate on that? What do you mean?” He said, “I think we need to do a biopsy.” I explained that I have a history of Hashimoto’s and that thyroids can look lumpy when you have Hashimoto’s. I asked why he wanted to do a biopsy and what he was seeing.

I will never forget his face. He turned back and said, “I’m not going to alarm you, but I just want to get a biopsy done.” I said, “Okay, great. Let’s do it.” They were so quick. That same day or the next day, I was in the ultrasound room getting the biopsy. It’s never fun to have a needle in your neck around all those important structures.

It took about five days to a week to come back. Those five to seven days, you’re trying to be calm, but you are thinking of everything it could be.

Hearing “You have thyroid cancer” at work

I was at work the day the results came back. The same radiologist who had looked at my scan initially and did the biopsy found me in the middle of the hallway and said, “Hey, when you have a moment, I need you to come into my office.” I think I knew then and there that it wasn’t good news. If it had been good, he probably would have just high‑fived me and handed me my report.

My husband was out of town for work. I went into the radiologist’s office. He had my scans up and the pathologist on the phone. He said, “Val, I think you should call your husband.” I said, “No, just tell me. I don’t like what’s happening. Just tell me what’s going on.”

The radiologist told me it came back positive: I had cancer. He explained that there is almost a scoring level for how malignant or dangerous it can be, and mine was the most malignant possibility. With papillary carcinoma, it’s pretty common to have a gene mutation that makes it spread faster or have the potential to spread faster. He held my hand and stayed with me. I am so grateful for the medical team that has been with me on this journey.

The pathologist explained that people can live with papillary carcinoma for years before it becomes a problem, but with the mutation I have, it has the potential to spread and metastasize to my lymph nodes. I asked if I needed to get it removed, and he said he would not wait any longer than a month to remove it. I said, “Okay, great. Let me call my husband.”

My adrenaline was rushing. I was focused on action: getting on the schedule with the surgeon, getting recommendations, and doing any scans I needed. It wasn’t until later, after talking to the doctors, that it truly hit.

Telling my husband: “There’s no good kind of cancer.”

I called my husband and said, “Babe, I have thyroid cancer.” At the time, life felt really heavy. We had just lost our son. My husband was working out of state. And then you hear the C‑word. No matter what kind of cancer, even thyroid cancer, which is considered a “good kind” of cancer, there is no good kind of cancer.

Making that call to my husband, telling him, “Honey, I have cancer, thyroid cancer, and they said I shouldn’t wait longer than a month to get it out,” was heartbreaking. He flew home immediately and was on a red‑eye about three and a half hours later just to be with me. My family also supported us, and I am very thankful for that.

From there, I got more scans to check for lymph node involvement. I had another CT scan with contrast to better visualize my thyroid. I met with a general ENT surgeon in the area who was very reassuring.

My surgery plan changed overnight from a half- to a total thyroidectomy

At first, scans showed cancer only on the left side of my thyroid. The surgeon said we would just remove one side, so I wouldn’t have to go on levothyroxine every day. That sounded amazing. I know how much the thyroid does for every aspect of your body, so I wanted to preserve whatever we could.

About two to two and a half weeks passed after the diagnosis, meeting with the surgeon, and getting scheduled. The night before surgery, my surgeon called and said he needed me to get one more scan. I told him I had already had two scans in the last two and a half weeks. He insisted.

The stat scan that night showed the cancer had actually spread completely onto the right side of my thyroid and was covering my thyroid. I remember thinking, “That’s so crazy.” The plan changed from a half-thyroidectomy to a full, total thyroidectomy.

He reassured me they would get it out, but I would have to be on medication for the rest of my life. No one wants to be on medication forever, and I wasn’t looking forward to it, but surgery went great.

My margins looked good. It was a very successful surgery, and I healed well.

“You’re cancer‑free” — and then a shocking recurrence

After surgery, I was referred to my first endocrinologist. I followed up three weeks after my total thyroidectomy and did blood work. She told me my cancer marker, thyroglobulin, was undetectable. She wanted to keep me in suppression. She said I would be considered in remission for thyroid cancer after three years, though my most recent endocrinologist later told me five years.

I asked, “If it’s undetectable, are you saying the cancer is gone?” She said, “Yeah, Val, you’re cancer‑free.” I was ecstatic. I thought, “This is the end of it.” Even though it was annoying to deal with, it felt like a short cancer journey that I could handle. We celebrated with my family.

Then that endocrinologist moved out of state, and I had to find another one. I hadn’t even met the new endocrinologist yet. He was brand new to the area and had just opened his practice. Around that time, I started feeling like something was pushing against my throat. I couldn’t swallow well. My thyroid pill is so tiny, but I was starting to choke on food and on thicker liquids like smoothies. I told myself it would go away.

At my first appointment with the new endocrinologist, I don’t think he even asked my name. He said, “Sit on the table. We’re going to do another ultrasound.” We laugh about it now because I told him later, “Did you realize you didn’t even ask my name?” He said he had business to take care of and needed to check things.

He pressed so hard with the ultrasound probe and then said, “This is not good.” I responded, “What do you mean? Hi, my name is Val. Can you tell me your name before you tell me this is not good?” He looked at his medical assistant and asked for a fine needle aspiration kit. He said we needed to do a biopsy.

I felt whiplash. I had already celebrated and accepted being cancer‑free. I asked him to explain what was going on. He finally told me I had suspicious lymph nodes and needed to check if the cancer had spread. I said, “No, I don’t have cancer. I was told I don’t have it anymore.”

He said it was up to me if I wanted to do the biopsy, but I had a really big lymph node right up against my vocal nerve. He said, “If anything, let me biopsy that one. That’s probably why you feel such pressure there.” I agreed.

I called my husband, and he didn’t believe me at first. He thought I was joking because my bloodwork had come back negative, and we were told I was in the clear. The biopsy was expedited and came back in about three days.

I was getting false negatives from my thyroglobulin, and it happened twice. He ended up doing about three biopsies. They all came back positive for papillary carcinoma. I asked what I needed to do, and he said I needed those lymph nodes removed with a neck dissection.

“I don’t think anyone will touch you”: I had risky lymph node surgery

I did another CT scan to see how many lymph nodes were involved. I called my original surgeon after he read the CT. He told me, “Val, I can’t even touch you.” I had lymph nodes in my chest, some on my vocal nerve, on my carotid artery, and on my aortic arch. He said the surgery was so risky he didn’t think anyone would touch me.

I remember feeling intense anger. I am not usually an angry person, but I felt like, “You told me my margins were good. You told me there were no lymph nodes. How did we miss this?” The lymph nodes were large, and my endocrinologist said, “You’ve had this the whole time.”

After I calmed down, I reminded myself that I work with some of the greatest radiologists. It may have been at such a cellular level that it didn’t appear earlier, and because of my mutation, it grew very fast. The confusing part was the false-negative thyroglobulin results.

I asked my original surgeon who I should go to. He recommended a second surgeon, Dr. Jason Diaz, an oncologic ENT who studied at Huntsman Cancer Institute. This is his specialty — anything around the neck; it’s his bread and butter.

When I called his office, they said his next available appointment was in six months. I thought, “Great, I’ll just let it fester in my body.” I didn’t trust anyone else. My husband told me I couldn’t wait six months. We called back and asked for a cancellation list. Forty‑eight hours later, they called and said he had an opening on Monday. I said yes immediately.

I went with all my paperwork, scans, and reports. He was so detail‑oriented. Surgeons aren’t always the warmest personalities, but I appreciated his honesty. He said, “Listen, I’m going to take such good care of you, but this is what’s going to happen.”

He told me the chances of my ever talking again were probably slim to none if he had to remove the lymph nodes around my vocal nerves because it would damage the nerve. He also said he was debating whether to touch the lymph nodes near my carotid and aortic arch. They were millimeters away. He said the risk of my not making it out of surgery was too high to remove those. I respected that honesty. I told him to tell me what I needed to do, and I would do it.

He showed me an implant he might place to help my vocal cord so I could talk somewhat, but I would never sound the same or be able to sing. Going into surgery, I knew I might still have cancerous lymph nodes left that could continue to spread. He explained the chances of metastasis to my lungs or bones would be higher.

In my mind, I kept hearing people say thyroid cancer is an “easy cancer,” yet I was sitting in a room being told I might lose my voice or not make it out of surgery. Everyone says it’s an easy cancer, yet I’m sitting in this room, potentially losing my voice and potentially not even making it out.

My high-risk neck dissection surgery and radioactive iodine

When I had the surgery, it went better than expected. He was very successful in getting all of the lymph nodes, even the ones in my chest. Later, he told me I had basically been positioned upside down, with my head tilted back 180 degrees, which helped lift those lymph nodes so he could reach them. He came out of surgery so happy and said, “I did it. I got all of them.”

Because it had already spread to my lymph nodes, I needed radioactive iodine. From my second surgery, which I am incredibly grateful also went well, to radioactive iodine, it has been a lot. My mom always joked because even when I had leukemia as a kid, every time they listed the “less than 1%” side effects, I would get them.

For radioactive iodine, I had to do Thyrogen injections. I got blurred vision and called my endocrinologist, saying, “I think I’m going blind.” My peripheral vision was completely blurred. He said it happens to less than 2% of people. My mom was right again. I had extreme nausea, bone‑deep fatigue from going from high suppression to being stimulated, and a sore throat and fever the first time. The second injection went a bit better because I was prepared with my Zofran ready to go.

Then I went in for the radioactive iodine and was put in isolation for a week. I had neck swelling, jaw pain where I thought my teeth would fall out, runny eyes, and a choking sensation from inflammation. I couldn’t taste good food, so I joked that I was on the salad and kale diet until my taste came back.

My PET scan results: “As of now, you’re cancer-free.”

I did a full‑body PET scan. The big concern was that the cancer might spread to my lungs or bones. I opened the results on my phone after a workout class, sweaty and not feeling my best. It said there was no indication that the cancer had moved and no indication of active cancer in the lymph nodes.

I read it to my husband, and he asked, “Does that mean it worked? Does that mean your cancer is gone?” I still didn’t quite trust it yet. A few days later, I met with my endocrinologist. She said that, as of now, I am cancer‑free, but we would continue checking every three months because recurrence with thyroid cancer is fairly common. You can never remove every single piece of thyroid tissue from the body.

My TSH or thyroid-stimulating hormone had stopped responding to the previous dose, so she increased my levothyroxine to keep me in a suppressed, hyperthyroid state as long as I can tolerate it. The side effects of being hyperthyroid are real, but if it means avoiding another surgery or radiation, I would choose the side effects most days.

My daily life after treatment: scars, pills, and small routines

The plan now is to keep me in suppression and monitor me closely every three months. In the meantime, I am rocking my scar and dealing with everything that comes with remembering to take a pill every day before eating. That is honestly one of the worst parts.

I am not a 5:00 a.m. person, but I try to get into routines. I joke that there is one reason I’m grateful I don’t have to take birth control, because remembering a pill at the same time every day is hard. But with thyroid cancer, you’re told, “You’re going to have to take a pill for the rest of your life anyway.”

My thyroid regulates so many vitamin levels that I now have a full regimen. I have a little pill container I refill every Sunday night, like I’m 80 years old. There’s nothing wrong with 80‑year‑olds and pill containers, but it’s not what I pictured as a 30‑year‑old. It’s been a wild ride.

The emotional toll on my parents and the burden of being a survivor

Navigating this again with my family has been complicated. With my first surgery, the total thyroidectomy, I barely shared anything with my parents. The way I felt scared, I knew my mom would feel it times a thousand. She’s just a mom. The doctors were so confident that I downplayed it.

When the cancer came back and I was told I needed another surgery in very risky locations, I broke down like a kid again and just wanted my mom. I called her at midnight, 1:00 a.m. her time in Houston. The phone barely rang before she answered.

We were FaceTiming, and I said, “Promise not to freak out.” She said, “I’m already freaking out, so go ahead and tell me.” I told her, “Mom, it came back, and the risks are a lot higher.” I was so beaten down and exhausted after everything this year that I reverted to being her little girl who needed her mom.

My parents flew out the following week, arriving the day before my surgery. I had tried to keep it from her, but eventually I said, “Listen, I’m having surgery again on this day,” and she said, “Okay, we’ll show up on Sunday.”

When I saw her at the airport, she broke down and cried, and we cried together. I kept saying, “I’m sorry.” There is a guilt you feel as a cancer survivor: the burden you put on your family.

My mom reminded me to stop apologizing. She was grateful I let her in. She said her reaction is her own and that I should know she loves me, is worried for me, and believes I’ll get through this. Seeing her and remembering how terrifying it was when I had leukemia as a child brought all those emotions back.

Grieving our son, infertility, and being forced to wait

On top of cancer, my husband and I have been dealing with infertility, partly from my history with leukemia, and then losing our son. Earlier this year, there were times when I physically could not get out of bed. We hadn’t fully processed his loss because two weeks after his stillbirth, I was thrown into this cancer fight.

We recently talked about how we have to wait a full year before trying to get pregnant again. He said, “Let’s use this year to honor him and think about how beautiful life really is. Let’s find different ways to honor him.”

Strangely, we are grateful for having to wait a year. We want to fill it with ways to honor our son, to find joy even when it hurts. We also have another chance to try to be healthy, and we have each other. I’m very aware that not everyone has a supportive spouse, so I don’t take that for granted.

We hope to use this next year to learn how to breathe again and find our new normal; still getting scans and bloodwork every three months, hoping we don’t need more surgery… but truly trying to heal.

What survivorship means to me now

Survivorship, to me, is choosing every day to see life as a gift, even when it doesn’t feel like one. After hitting five‑year remission from childhood leukemia, I used to tell myself that everything is a gift — trials, heartache, and joy. You have to continuously choose to see the lighter days and take every emotion as it is. Where there is a lot of heartache, there is also a lot of joy and love.

Somewhere in my 20s, I think I lost some of that perspective. I got more inward, more focused on my own world, letting weeks go by without talking to family or friends. After dealing with infertility, losing our son, and then a second round of cancer, that earlier sense that “everything is a gift” has been reignited.

Now survivorship looks like using my time intentionally: showing gratitude, loving the people in my circle, and serving where I can. It means accepting that there will be scans every three months, side effects from being in a hyperthyroid state, and days when the emotions are heavy and I can’t pull myself out of a sad moment. But it also means celebrating tiny wins.

My message to others living with cancer

If someone came to the end of my story and I had one piece of advice or one message to leave with people, it would be this: find the happiness and gratitude in the small things.

Life can be full of a lot of unfairness, but there is good out there. Keep going, even when it’s hard.

Thank you for sharing your story, Valerie!

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Non-Hodgkin Lymphoma at 29: How Ashley Navigated Motherhood and DLBCL

Post author By Katrina Villareal
Post date November 25, 2025
1 Comment on Non-Hodgkin Lymphoma at 29: How Ashley Navigated Motherhood and DLBCL

November 25, 2025

Non-Hodgkin Lymphoma at 29: How Ashley Navigated Motherhood and DLBCL

Ashley’s experience with diffuse large B-cell lymphoma (DLBCL), a type of non-Hodgkin lymphoma, began during a period that should have been filled with new beginnings and joy – the arrival of a new baby into her life. Instead, Ashley, now a mother of three, confronted a growing list of symptoms shortly after her pregnancy when dizziness, cardiac complications, and difficulties breastfeeding all led up to an unexpected, and life-altering cancer diagnosis.

Interviewed by: Keshia Rice
Edited by: Katrina Villareal

Being diagnosed with DLBCL weeks before her 30th birthday set Ashley apart from the typical patient profile, as most individuals face this diagnosis later in life. Her youth contributed to challenges in being heard by her medical team, intensifying her frustration as treatments like chemotherapy caused debilitating side eff e cts. Emotional struggles compounded Ashley’s physical battles: fear of leaving her children, grief over lost moments with her newborn, and the continual responsibilities of motherhood that do not pause for illness.

Despite assurances from leading cancer doctors regarding advances in treatment options, Ashley’s cancer responded poorly to initial therapy, necessitating additional interventions, including CAR T-cell therapy, which required extended separation from her family. The transition from hope to uncertainty was difficult, but new developments with bispecific antibodies and ongoing research provide Ashley and other patients reasons to hold onto hope for recovery and better outcomes even amid refractory disease.

Ashley’s experience is marked by transformation, not just physically but emotionally and spiritually. She learned to lean on her family and faith for support, grappled with feelings of guilt and anger, and emerged with the conviction to advocate for herself and encourage others to trust their intuition. Her story is a testament to the unseen emotional dialogue cancer patients navigate, and to the importance of self-advocacy, community, and accessible innovations in cancer care.

Key Story Takeaways:

Trust and advocate for your own body; patients know their symptoms best and should persist until they are heard.
Emotional struggles, like fear, guilt, and anger, are often invisible but just as challenging as the physical aspects of disease.
Family support and faith provided critical anchors for Ashley, helping her endure even the most difficult days.
DLBCL can affect patients of any age, and younger individuals may face unique challenges in being taken seriously by the medical team.
New therapies, including CAR T-cell therapy and bispecific antibodies, offer hope even in refractory cases.
Advocacy and self-acceptance are vital; patients experiencing life-altering conditions deserve compassionate care and respect for their experience.

Name: Ashley P.
Age at Diagnosis:
- 29
Diagnosis:
- Diffuse Large B-Cell Lymphoma (DLBCL)
Staging:
- Stage 4
Symptoms:
- Feeling like holding breath when bending down or picking up objects from the floor
- Waking abruptly at night, feeling “off”
- One episode of fainting (syncope)
- Presence of a large mass in the breast
Treatments:
- Chemotherapy
- Bridge therapy of chemotherapy and radiation
- CAR T-cell therapy

Thank you to Genmab and AbbVie for their support of our independent patient education program. The Patient Story retains full editorial control over all content.

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.

Table of Contents

Facing the Unexpected: Early Signs and Diagnosis
A Young Mother and a Rare Diagnosis
The Unseen Struggle: Emotions Behind the Experience
CAR T-cell Therapy and Next Steps
Advocacy and Self-Empowerment: Lessons Learned
Advice for Others: Faith, Family, and Resilience
Moving Forward: Transformation and Community

I didn’t realize how big the lump was. It was literally the size of a baseball. But it didn’t raise any red flags.
Ashley P., Stage 4 DLBCL Patient

Facing the Unexpected: Early Signs and Diagnosis

Ashley P.: I’m not afraid to die by any means. I would say I fear leaving my children and leaving them without a mom.

What should have been one of the happiest times in her life became filled with worry when Ashley was diagnosed with a cancer she hadn’t heard of before: non-Hodgkin lymphoma, specifically diffuse large B-cell lymphoma or DLBCL.

Ashley: I started having symptoms while I was pregnant. I had our baby in December 2023 and at the end of my pregnancy, I was having a lot of complications with my heart rate. In February 2024, I started to feel super lightheaded, as if I was hanging upside down for a very long time. It reached a point where I was getting concerned about being alone with the baby. I felt like I was going to pass out. What if I’m holding him and something happens?

Dizziness wasn’t her only concern. Ashley also started to have trouble breastfeeding. A trip to see her midwife helped lead to the diagnosis.

Ashley: I went to nurse him one day and I couldn’t extend my nipple. It was completely caved in. I tried everything to get it unclogged, like hot showers and massages, but they didn’t work, so I reached out to my midwife.

I didn’t realize how big the lump was. It was literally the size of a baseball. But it didn’t raise any red flags. When I saw my midwife, she looked at it and said, “Ashley, this is very, very large. You need to go to the breast cancer center,” which was wild to me.

I went in and they did biopsies on both breasts and the lymph nodes in my armpits, and that’s how I found out.

We have more FDA-approved medicines for lymphoma than for any other cancer… It’s awesome because it means we have more options for patients
Dr. Joshua Brody, Hematologist-Oncologist

A Young Mother and a Rare Diagnosis

The average age for a DLBCL diagnosis is in the mid- to late-60s. Ashley says being diagnosed at a much younger age made the treatment process even more frustrating.

Ashley: I found out I had cancer literally two weeks before my 30th birthday. They said that I was so young and that everybody they usually see with this cancer is in their late 70s. They told me that it was going to be an absolute breeze.

I had a very hard time being heard because I was so young. Chemotherapy rocked my world. I was extremely sick. I barely had time to recover between rounds. I kept telling my oncologist that I was so sick and miserable, and the response that I kept getting was, “You’re young. You shouldn’t be.”

DLBCL can be a devastating diagnosis. But top cancer doctors, Dr. Amir Steinberg from Westchester Medical Center and Dr. Joshua Brody from Mount Sinai, want people to know that there’s a lot of hope. Watch their discussion.

Dr. Joshua Brody: We’re very lucky because, even though lymphoma is technically the fifth most common cancer in America, we have more FDA-approved medicines for lymphoma than for any other cancer, even more than for breast cancer, which is so incredibly common. It’s awesome because it means we have more options for patients

Dr. Amir Steinberg: There’s so much that’s changed in the last 20 to 30 years, most especially in the last five years. Things are changing for the better so rapidly for patients. As doctors, we have so much to catch up on and stay up on in terms of the knowledge out there, but it’s totally worth it because it will make patients’ lives better and more fulfilling.

Despite assurances from doctors, treatment was daunting.

Ashley: I don’t think people understand that you can see all the physical changes. You can see the hair loss, the bloating, the puking, and even the literal color draining from their face. But you cannot see their inner dialogue. You can’t see them fighting for their lives. You can’t see the anger or the conversations with God about why. Questions of, “Did I do something wrong to deserve this?”

The world doesn’t stop… You still have to show up and be a mom and a wife… and that is such a hard challenge.
Ashley P., Stage 4 DLBCL Patient

The Unseen Struggle: Emotions Behind the Experience

As a mom of three, Ashley dealt with mixed emotions of guilt, stress, and sadness over the experiences she lost.

Ashley: I honestly think I got robbed of the joy. He’s my last baby and I had this huge goal of nursing. It was easy with him. I had all these plans, but I was in so much pain from my cancer.

Then I have a nine-year-old and an almost five-year-old, so it was difficult juggling that and trying to figure out the best way to tell them what I was going through. That was probably the roughest part.

The world doesn’t stop and that thought came into my head so many times while I had cancer. You still have to show up and be a mom and a wife. You still have to be all of these things while battling the biggest physical challenge that you’ll ever go through and the biggest emotional and mental struggle that you’ll ever have to battle. You still have to show up for everybody around you and that is such a hard challenge.

One of the hardest emotions Ashley had to deal with was anger.

Ashley: I knew that I was mad and not the best version of myself. Then you have this feeling of complete guilt. What if you die and this is who you showed up as and who you left as? This is how you treated your fiancé and your kids? Don’t you value life? Didn’t you say that you wanted to show up differently? Didn’t you say that you were going to be a completely different person because now you know the value of life and how it can be taken away? Now, you have this complete guilt trip of who you’re showing up as. But at the same time, you’re so mad. You’re so mad.

I thought, ‘What if I go through all of this and then I still have cancer?’ That was something that I didn’t want to face.
Ashley P., Stage 4 DLBCL Patient

During those moments, Ashley leaned into her family and her faith.

Ashley: I’ve seen other people talk about it, but there is a sense of peace and knowing that I have not experienced in my life. Definitely not the peace that carried me through. I had to be here for my kids. There were so many times when I thought that if I were doing this for myself, I wouldn’t have gone through it. It was too much. It was so hard that I truly don’t know if I would have shown up in the same capacity.

CAR T-cell Therapy and Next Steps

After six rounds of chemo, Ashley thought the hardest part was over. But her DLBCL was refractory, meaning it did not respond well to initial treatment.

Ashley: When I did my chemo, they didn’t even talk to me about the steps and what they would do. Again, age was a huge factor. We did have conversations about other things out there. It went from a 70% chance of beating this and the odds are good of going to Mayo, to my odds going down to 10%. The biggest concern was waiting for the CAR T-cell therapy. But after, they told me, “This is your last option. If this doesn’t work, there isn’t anything more out there for you to do.”

CAR T-cell therapy came with new challenges.

Ashley: When you go through CAR T-cell therapy, you have to be gone and by the hospital for 47 days, away from your family. I thought, “What if I go through all of this and then I still have cancer?” That was something that I didn’t want to face. I didn’t even want to have that be a possibility. I just wanted to be done.

Whenever possible, we try to offer trials because that’s how we advance the science and get higher cure rates. They’re essential.
Dr. Amir Steinberg, Hematologist-Oncologist

Ashley’s experience reflects the complexity of DLBCL treatment. It’s one of the reasons why doctors are constantly looking to new research in clinical trials for answers. One of the answers is a newer option in immunotherapy called bispecific antibodies.

Dr. Brody: Even for people who relapse in the first year or in their third line, there is great evidence for bispecific antibody plus chemotherapy. Overall, it certainly seems to be a bit safer than transplant, maybe even safer than CAR T-cell therapy, and it’s a lot more accessible to folks who are being treated in the community when they don’t have a CAR T-cell therapy center nearby. If you’re getting more options, then that can only be a good thing. People would rather have a clear answer. But they would rather have better therapies and better options.

Dr. Steinberg: Whenever possible, we try to offer trials because that’s how we advance the science and get higher cure rates. They’re essential.

Advocacy and Self-Empowerment: Lessons Learned

While Ashley eventually found a great and supportive medical team, she wishes she had advocated for herself more from the beginning.

Ashley: That is one thing I regret and one thing I always tell somebody. You have to advocate for yourself. I’m not that person. I’m very shy. I don’t want to make people upset. I want to make everybody happy. I struggled very much with advocating for myself.

Advocate for yourself. If something doesn’t feel right, if you know something’s wrong, or if you feel sick or in pain, talk about it until you’re blue in the face and somebody listens to you.
Ashley P., Stage 4 DLBCL Patient

Advice for Others: Faith, Family, and Resilience

Ashley’s advice to others? Advocate for yourself, lean into your faith, and learn to accept the changes.

Ashley: Be honest with how you feel. Have those hard conversations. Lean into God as much as you possibly can because at times, that’s literally all you have. You would be very surprised at what you’re willing to go through and what you’re willing to overcome for the people that you love. It’s almost like an adrenaline rush to make it through.

Advocate for yourself. If something doesn’t feel right, if you know something’s wrong, or if you feel sick or in pain, talk about it until you’re blue in the face and somebody listens to you. You know your own body. You have that intuition for a reason and you know when something is wrong.

Moving Forward: Transformation and Community

Ashley: You make it. You make it out alive. You will never be this version of yourself again and that is completely okay. Sometimes we have to go through something completely terrifying and life-changing to figure out who we want to show up as and what’s important to us. It’s going to suck so badly. But you find out who your people are. So many people love you. And you make it.

Thank you for sharing your story, Ashley!

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Hosted by The Patient Story Team | 1h 9m 30s

Hear Dr. Joshua Brody and Dr. Amir Steinberg discuss new treatments for relapsed/refractory DLBCL and how academic–community collaboration helps patients access the best care. Moderated by DLBCL Advocate Stephanie Chuang.

Watch On Demand!

Thank you to Genmab and AbbVie for their support of our independent patient education program. The Patient Story retains full editorial control over all content.

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.

Advocating for Yourself: Kacie’s Experience with Ovarian Cancer

Post author By Chris Sanchez
Post date November 18, 2025
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November 18, 2025

Advocating for Yourself: Kacie’s Experience with Ovarian Cancer (Stage 3 Low-Grade Serous Ovarian Carcinoma)

Kacie was diagnosed with ovarian cancer (stage 3 low-grade serous ovarian carcinoma) just after her 30th birthday. But her experience began years before with persistent, misdiagnosed symptoms, including painful periods and pelvic pain, that were repeatedly attributed to endometriosis. It was only after a 14-cm pelvic mass was discovered that she learned that her symptoms were really due to an uncommon, aggressive form of ovarian cancer.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Support from her wife, Hayley, and family helped Kacie through the daunting series of treatments. Surgery brought both physical and emotional loss: the ovarian cancer had spread, resulting in a full hysterectomy and a devastating blow to her hopes of carrying a child. Post-surgical hurdles included bowel blockages, an ostomy, and a long, difficult recovery. Kacie’s resilience never faltered, though; she drew strength from her passions, especially photography, and documented this raw chapter in striking “rock the bald” portraits that would ultimately empower and encourage others facing similar diagnoses.

Kacie’s experience with chemotherapy and an ostomy came with unexpected challenges. She found chemotherapy less punishing than surgery, but adapting to life with an ostomy took time and self-compassion. As she healed, Kacie and Hayley pursued IVF and embraced a new vision of family. Connection with both Hayley and her grandmother, who would later undergo an ostomy herself, became a source of mutual healing and understanding.

Although her scans are now clear, the knowledge of a high recurrence rate, especially after a tumor rupture, lurks at the edges of each new day. Still, Kacie remains hopeful and honest. Through social media, she provides rare insight, advocacy, and practical guidance for others affected by low-grade serous ovarian cancer. Her story highlights the importance of self-advocacy and community.

Watch Kacie’s video and scroll down for her interview transcript. You’ll learn more about how:

Fertility challenges and loss may arise, but new paths to parenthood, like IVF, can bring hope and connection
Adjusting to life with an ostomy takes patience and experimentation, and sharing personal experiences can help others adjust
Joy and hope can coexist with fear of recurrence. Living authentically and embracing support is vital for long-term healing
Kacie transformed her most vulnerable moments into empowerment, helping both herself and others
No one should undertake the patient experience alone; support networks and openness are powerful tools

Name: Kacie K.
Diagnosis:
- Ovarian Cancer (Low-Grade Serous Ovarian Carcinoma)
Age at Diagnosis:
- 30
Staging:
- Stage 3
Symptoms:
- Pelvic pain
- Sharp pains during menstrual periods
- Inability to urinate normally
- Bleeding
Treatments:
- Surgeries: full hysterectomy, ostomy surgery, ostomy reversal surgery
- 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.

Transcript of Kacie’s Interview

My name is Kacie
Life before diagnosis: my family, work, and passions
My early symptoms were misdiagnosed
The moment everything changed
Coping with fertility loss and IVF hope
Chemotherapy and adjusting to an ostomy
Living with the fear of recurrence
Navigating marriage and my mental health
Ostomy reversal and helping others
My social media advocacy
What I want people to know

My name is Kacie

I was diagnosed with stage 3 low-grade ovarian cancer. It’s a very rare cancer. I was diagnosed when I was 30 years old in December 2024.

Life before diagnosis: my family, work, and passions

When I’m not working, I travel to see my family and friends in Chicago and Michigan. My dad passed away from cancer a couple of years ago, so going home can be tough. But I recently got married; my wife Hayley and I were married last year. Her family has surrounded me with so much love during this whole experience. My mom has been able to visit a few times, but it’s not quite the same. I’m so grateful for them.

I enjoy photography, mostly weddings and engagements. Right after my clear scan, I even shot a wedding after chemo. I was weaker, but I did it, and it felt amazing. I also love cooking for my wife and exploring the outdoors. We recently hiked the Grand Canyon.

We just love little adventures together. That’s what makes me happy.

I did a photo shoot to “rock the bald.” Some shots included scarves and wigs, but that plain one was my favorite.

It was important for me to document that time. A photographer friend invited me to her favorite studio. We just had fun with it, and I wanted something to look back on. I knew I’d never look like that again, so why not show it to the world?

When I got the photos back, I was in love. She captured them beautifully. Fun, candid moments and even the bald ones looked powerful. But sharing them publicly was scary at first. It’s a little bit exposing myself to social media, like fully bald for the first time, which is a scary thing to do.

My early symptoms were misdiagnosed

I had symptoms for years; really painful periods, severe pain during sex, and stabbing pelvic pain. At 21, my doctor told me it was probably endometriosis. For years afterward, I believed that and blamed every new symptom on “my stupid endometriosis.”

Then I developed urinary problems. I had to press on my pelvis to pee. During our honeymoon, it got worse. By December, my gynecologist couldn’t even do a Pap smear because of a large mass. She comforted me, saying, “You’re not crazy.”

An ultrasound showed a 14 cm pelvic mass. MRI scans couldn’t tell what it was connected to; maybe GI or ovarian. I was referred to a gynecologic oncologist who said I’d need surgery, but wasn’t sure which specialty needed to operate. Eventually, a colorectal surgeon joined the team.

I met them on my 30th birthday. The surgeon said I’d need major surgery with about two months of recovery time. The wait for surgery was long, and my symptoms got worse — urinary retention, bleeding, and pain.

I had to be such an advocate for myself because my symptoms were getting worse each day.

The moment everything changed

Days before surgery, I told my doctor it was really important to try to save my ovaries. I wanted to carry a child someday. She promised to try but couldn’t guarantee anything.

Surgery lasted eight hours. An hour and a half in, my wife got the call: “It’s definitely cancer.” They had to do a full hysterectomy because the cancer had spread through my pelvis and abdomen.

I woke up to everyone crying, but I didn’t yet know why. A nurse accidentally mentioned I’d had a hysterectomy, and my mom confirmed over the phone. I was in shock, but more sad about the hysterectomy.

The tumor had ruptured during surgery, spreading cancer cells. I spent 10 days in the hospital with complications like bowel blockage, an NG tube, and fainting during tests.

I didn’t eat for 12 days. It was the worst pain of my life.

Coping with fertility loss and IVF hope

Hayley and I decided to move forward with IVF. She offered to carry our child. We’re using my sister’s donor’s sperm, connecting both sides of our family.

I feel so connected — even though it’s not genetically my child, it still links our families.

We’re currently doing IVF treatments and preparing for a transfer soon.

Chemotherapy and adjusting to an ostomy

Once I healed, I started six rounds of chemo every three weeks. Chemo was easier than surgery. Chemo was more of a breeze for me because surgery was the worst pain I’ve ever felt.

After my second chemo, I developed a mysterious allergic reaction and spent five days in the hospital.

The toughest part was adjusting to my ostomy. I cried often trying to change it. My skin was raw, and I had to experiment with supplies. Eventually, I found what worked.

When my July scan came back clear, I sobbed with relief. Still, low-grade ovarian cancer carries a 70% chance of recurrence, especially since my tumor ruptured.

You’re filled with relief after a clear scan, but the fear of recurrence never fully disappears.

Living with the fear of recurrence

I get scans every six months, but I’m already feeling symptoms again. It’s hard not to wonder.

I stay busy, but sometimes fear creeps in. A friend’s cancer returned soon after chemo, and she couldn’t be treated. “That’s my worst fear.” Still, I stay outwardly positive, not fake; just hopeful.

I’m not faking it. Some people don’t know the tough stuff. They just see what I show on social media.

Navigating marriage and my mental health

We got married right before all this, and it changed everything. But I stay focused on positivity; our house, our dream of having kids, hiking, and traveling.

I see us making friends with the neighbors, traveling with my flight benefits, and raising kids. I’m not negative all the time; just real.

When dark thoughts come, Hayley gets me outside to hike or enjoy the sunshine. Being outdoors brings peace. I haven’t felt this much joy in a long time.

Ostomy reversal and helping others

I recently had my ostomy reversed and healed quickly. I was only in the hospital for two days. It felt incredible to no longer have the bag.

I’ve shared ostomy videos on TikTok — how to change it, which supplies helped. After my reversal, my grandmother got an ostomy, and I was able to help her.

That was full-circle. I could help her the way I wished someone had helped me.

I share my diagnosis on Instagram and TikTok because low-grade ovarian cancer is rare. When I was diagnosed, I searched for people like me online. I want to be that person for someone else.

I posted a lot during chemo, but less now. Hayley keeps telling me to post more, but I’m figuring out how to share again.

I want to use my story to educate and connect with others facing the same rare cancer.

What I want people to know

If you take one thing from my story, it’s this:

Take things day by day. Don’t get overwhelmed by the big picture. Focus on what you can do today.

And if you’re going through chemo, don’t feel bad about doing nothing, because your body literally can’t.

Thank you for sharing your story, Kacie!

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From No Symptoms to Brain Cancer (Grade 2 Astrocytoma): Kelsi’s Story

Post author By Chris Sanchez
Post date October 5, 2025
No Comments on From No Symptoms to Brain Cancer (Grade 2 Astrocytoma): Kelsi’s Story

October 5, 2025

From No Symptoms to Brain Cancer (Grade 2 Astrocytoma): Kelsi’s Story

Kelsi’s life changed in ways she never expected when she was diagnosed with a grade 2 astrocytoma, a type of brain cancer, in her early 30s. Raising two young kids, ages two and four, with her husband, she had been busy juggling motherhood, music-filled family life, and work. There were none of the usual red flags; no headaches, seizures, or tingling. What led to her diagnosis was lingering hip pain from a difficult pregnancy, which prompted an MRI that eventually revealed the tumor.

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

Even after hearing the words “brain cancer,” Kelsi didn’t look sick. She could pick up her kids, smile, and go about her day. Still, the diagnosis shifted her perspective on identity and purpose. She realized the importance of living as her authentic self and letting go of comparisons to others. Her young children have noticed the changes, too. Her four-year-old calls the surgical scar on her head “Mom’s boo-boo” and celebrates that she can now pick them up again. For Kelsi, parenting toddlers while managing her rare cancer means balancing medical appointments, fatigue, and recovery, all while staying present for her kids.

Awake brain surgery was the most daunting part of her treatment. The idea of being conscious during the procedure felt surreal, but online brain tumor communities offered guidance and reassurance. Though the surgery only allowed for a biopsy to avoid permanent damage to her right leg, Kelsi came out determined to focus on what matters. Recovery brought foot weakness, headaches, and fatigue, but also gratitude for her support system, from her parents and husband to friends who organized meal trains.

Today, Kelsi is on a new targeted therapy for IDH-mutant low-grade gliomas. Her goal is to delay chemotherapy and radiation therapy for as long as possible to protect her cognitive health, especially while raising her children. She knows her brain cancer is incurable, yet treatable, and she finds hope in advances in science and the possibility of new options ahead. Social media, therapy, and connecting with others facing similar challenges have been lifelines. She now shares her story online, offering support to others searching for hope beyond frightening Google results.

Through it all, Kelsi embraces her identity beyond the diagnosis, showing her children that brain cancer doesn’t define her. She focuses on what is important: love, presence, and authenticity.

Watch Kelsi’s video and read through her interview transcript below. You’ll take a deep dive into her story, including:

How a young mom discovered that she had brain cancer even without warning signs
Parenting two toddlers while recovering from awake brain surgery
Why “not looking sick” can be both a blessing and a challenge
The surprising way hip pain led to her life-changing diagnosis
Finding community, hope, and identity with brain cancer

Name: Kelsi N.
Diagnosis:
- Brain Cancer (Astrocytoma with IDH Mutation)
Grade:
- Grade 2
Symptoms:
- None; tumor discovered by accident during brain MRI
Treatments:
- Surgery: awake craniotomy
- 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.

Transcript of Kelsi’s Interview

I'm Kelsi
I had no symptoms
How I reacted
I needed brain surgery
My recovery
My treatment plan
How my diagnosis impacted my day-to-day
The most difficult part of my diagnosis
What my support system has looked like
How I’ve found support online
What I want others to know

I’m Kelsi

I have a grade two astrocytoma. I was diagnosed in July 2025.

I have two kids, they’re two and four years old, and they are amazing. My husband and I enjoy going to concerts, and I enjoy reading. We’re a big music family, and we really enjoy music.

I had no symptoms

I did not have any red flags. I did not have any symptoms at all. My four-year-old was born in 2021, and he was 10 pounds. He was a big baby. And I had pubic symphysis dysfunction, which causes pain, often during pregnancy, due to excessive joint movement. My hips separated before birth, and it caused me hip pain during pregnancy. And then after pregnancy, I still had hip pain. So I went to the doctor in February of 2022 after he was born, still having hip pain. They did an MRI, saw something in my lower back, and wanted to do a full spine MRI. We did the spine MRI and found something in my spinal cord. They wanted to rule out Chiari malformation. So they did a brain MRI and we found my brain tumor.

How I reacted

I immediately went very pessimistic, got very dark. But the doctors here in town where I live were very reassuring, and I went to scans every six months here, but then, finally, my gut told me I needed to go do something else, because they were not brushing it off, but making it seem like it wasn’t a big deal. It could be bad, it could be good, we don’t really know what it is.

I told my husband in 2024, “Let’s go to MD Anderson and just get it checked out.” I was ready to know what it is or just get it behind us. And MD Anderson said that they saw growth on my MRIs that the doctors here locally did not see. And they wanted to do awake brain surgery.

I had another MRI with them in January of 2025, and there was a little bit of growth, and that’s when they seemed very concerned. So I remember my husband and I were in the room. We asked, “Is this brain cancer?” And the oncologist looked at us, and she said, “Yeah, it is.” And it was something that I had known that this tumor existed, but it didn’t have a name. I didn’t know it was cancer. January of this year was when it really hit home.

My husband and I both started crying. Our oncologist started reassuring us, saying, “It’s not your fault, there’s nothing that you could have done.” But also in the same mindset, I was optimistic that I hadn’t had any, I haven’t had any seizures, I haven’t had any headaches. All of this was totally incidental. So I felt even in that moment that I was in a good headspace.

After the appointment, my husband and I were in a daze. I usually text my parents after every appointment to update them. And so I texted them, and I was much more vague than usual, because they were watching the kids. I remember coming home to our house. My mom had the kids, and I told her about the findings face-to-face. And she put up a really strong front. She said, “Okay, well, whatever it is, we will get through it.”

I needed brain surgery

I knew I was going to have to be awake during the surgery. That, I think, was the hardest thing to try to come to terms with. The whole month of June, all I was thinking about was that I would be having awake brain surgery.

I watched a lot of videos. There’s a brain tumor group on Facebook of people who have had awake brain surgeries. I’m a very, very anxious person, and I was wondering if I would have a panic attack or something in the surgery. I was afraid I was going to mess it up. But the people in the Brain Tumor Facebook groups reassured me, and a lot of people had awake surgeries that were successful.

The night before the surgery, I was very, very nervous. Going into the operating room that morning was the strangest experience. It was like being in a dream and feeling that I’m going to wake up soon.

The procedure took about eight hours. I went to the hospital at around 6.30, entered the operating room at 7:00, and then I was out by 3.30 or 3.45.

My recovery

I was only in the hospital for two days. I went there for my surgery on July 2nd, and I left on July 4th.

My brain tumor is in my motor strip. So whenever they were in there, they knew that it could affect the right side of my body, and it did. And so we were only able to get a biopsy without causing permanent damage. So I still have most of my tumor left. But even just from the biopsy, touching it on the motor strip, I was unable to walk, or was unable to use my right leg and my right foot for a week and a half to two weeks. I had something called drop foot. I had a walker, went to physical therapy, and I could feel everything. If somebody touched my legs, I could feel it, but I just couldn’t lift my right leg. That was probably the scariest thing, second to surgery, my brain telling me to move my foot, and I couldn’t do it.

I did have headaches after the surgery. I still have headaches now, but they’re not nearly as prominent as they were. I got a fun little migraine mask that you put in the fridge that you put over your whole face. That’s still been a godsend whenever I get home from work. Headaches, and bright lights — it’s now more the latter than noise that triggers a headache.

My treatment plan

In August 2024, the FDA approved a drug called Vorasidenib, which is an IDH inhibitor. And my tumor is an IDH mutant grade two astrocytoma. And so this drug was curated for low-grade gliomas with the IDH mutation. And I was able to start that with hopes that that will push off the need for chemo radiation for as long as possible, so that I don’t have to have any cognitive side effects, since I’m so young, my kids are so young. But hopefully, it will buy me time. Because we did the watch-and-wait approach from 2022 to 2025. And then MD Anderson said, “No, it is showing a little growth.” But luckily, I was eligible for this drug.

I’m tolerating it really well. I’m fatigued, but I think that can be related to a lot of environmental factors as well. I think it’s also due to just being back at work and having two young kids. I think I’m just 11 weeks post-surgery; I counted yesterday. And I’m so tired from that procedure. But overall, I’m tolerating it really well.

It is incurable, but it’s treatable. It could mutate to a higher grade, a grade three or a grade four, but the hope is that the targeted therapy I’m on will keep it at bay for as long as possible. They told me that I couldn’t have a full resection without losing the total capability of my right leg. I feel like a lot of people with brain tumors have seizures, numbness, or tingling in their legs. And so I think that’s what was a big wake-up call too, with my not being able to use my foot because I hadn’t had any symptoms. This is like having brain surgery, which was the first thing that actually hurt my head. And then I lost the ability to use my foot for a week and a half. And I was like, okay, so this is the reality I’m facing.

I’ve been wearing bandanas and stuff. But this is actually the first time I’ve worn my hair down without a bandana. And I was doing a thing on TikTok, and I was taking pictures because it looked like a little Chia pet, like the way it was growing in. That’s what my mom kept calling it, but now it’s grown in so much. It’s kind of folded over, but there’s a big line there.

How my diagnosis impacted my day-to-day

It has had a significant impact. I’d like to think that the brain cancer doesn’t define me. It just woke me up. I understand now what is important and what is not so important. As young women, we grow up comparing ourselves to other people and what we should do to fit in, who likes us, and friend groups. And now I think it was not a much-needed reality check, but it was definitely a reality check of what my purpose is. What is important? Like living my true, authentic self.

It has been difficult, but my four-year-old is very, very observant. And now that my hair’s growing back, he goes, “Mom’s boo-boo’s gone. Mom’s boo-boo’s gone.” And I go, “Yes, but…” And so we haven’t really explained to them that this will be an ongoing thing.

They knew that there was a boo-boo in my head. The doctor took it out. But now that I can lift it, and that I can pick up my kids, he keeps saying, “Your boo-boo’s gone. You can pick us up. Mom, are you okay?” They know I’m on medicine for my boo-boo. It’s been pretty difficult to navigate, but I think both of my kids are warriors, and they’ve been super responsive to my needs throughout this whole thing.

The most difficult part of my diagnosis

I think the hardest part was the unknown. From when I first found it, and I was on the watch-and-wait approach here, they didn’t seem like it was a huge deal. I just knew it existed. I didn’t have a name for it. But then, when I went to the cancer center in 2024, and they were alarmed, I think the waiting before finding out what it was was probably the hardest part.

I think I’ve realized what I value more, what is important to me. Relationships that I’ve maintained. Just wanting to be myself throughout all of this and show my kids that even though there is something rather big hanging over my head, I don’t let it define me. I’m still going to show up, I’m still going to be a good mom, a good employee, a good friend, a good wife, a good partner, all of that.

It is a lot. I’ve really had to learn to prioritize what’s important and what really means something to me, and what is going to help me live my fullest life, because it will likely be cut short by brain cancer. As well as what I can do to have an impact while I’m here.

What my support system has looked like

My parents have been incredible throughout the whole thing. They took care of my kids while I was in surgery. They drove my kids to Houston and stayed in a hotel. And then my husband left the hospital room and went downstairs to the lobby of the hospital. My parents came up, so my kids were there, but didn’t have to see me like that. So my parents have been my greatest support system.

My brother started a GoFundMe for me, which was incredible. One of my really good friends from work had a meal train for me, and that was life-saving, because I still haven’t cooked at all. Trying to bend over and pick up things, and having to maneuver, and doing so many tasks at once. I didn’t realize how much it would affect me, and so that was amazing.

I’m in a group text with my best friends. Every morning, like the morning of surgery, they were texting me, and my husband was able to keep everybody informed. I know it’s hard for me, but I can’t imagine how hard it is for my husband right now. Having to see the unknown. We don’t know what’s gonna happen. And so I don’t envy his position.

How I’ve found support online

I feel like the first thing you do when you get a diagnosis like this is to Google. And that can be very detrimental to your mental health. I Googled, and I let myself get to a very dark place for a couple of weeks after I found out that it was likely brain cancer. And I sat in the darkness of my mind, and I was like, “Okay, this is terrible.” And then I went, “But I’m sure this has happened to other people.” And then I started getting on social media, and there are so many Facebook groups and young people my age and in their mid- or early thirties who are going through something very similar. And then some people had it when they were in their thirties and are still thriving and doing really, really well. And so that kind of impacted me.

I feel like when most people think about brain cancer, they think it’s a death sentence. When I found out, I was with a newborn and, at the time, a two-year-old. And I got really dark, but it gave me some hope and some realistic expectations. And I’ve gone to therapy, which has been awesome.

I feel like when I talk about others and want to do stuff for others, I’m very optimistic. But for myself, I feel like I get very pessimistic about reality. My therapist keeps telling me, “Well, the odds of the worst case scenario happening are the same odds of the best case scenario happening.” But immediately, you always think, “This could happen. It could be this.”

What I want others to know

You cannot compare your situation to others. If you’ve met one person with a brain tumor, you’ve met one person with a brain tumor. Not every case is the same. I now have a core group of four or five girls that I talk to daily. I met them through this Facebook group. We’re going through the same things, but all of us have had different symptoms, different responses to treatment, and so on.

The community is a very small, very unfortunate place to be in, but it has been super supportive. They absolutely know what’s going on. When I started posting on TikTok, I found some people there who were going through the same things and could give good advice, like what to pack for brain surgery and what to do after brain surgery. I was like, “That’s genius.” So I found people who were in the same situation as me, and then I started posting. As. of now, I’ve had five or six people reach out to me on TikTok who are going through the same thing. “I’ve exhausted all my efforts on Google. I’m in a really dark place right now. Your story gives me help.” I know when I reached out, when I first got diagnosed, I reached out to other people who had gone through it. I was very happy that they responded. If I can do that for somebody else, I feel like I will be pretty fulfilled.

Google’s outdated, don’t listen to Google, don’t read Google. If you Google my cancer now, I think it says a patient has a five- to seven-year prognosis, which is jarring. Being where I am right now, I feel like I’m in a good time for science. And that gives me help. And then the treatment that I’m on gives me hope that there will be different options in the future before I have to do chemotherapy and radiation.

Since I didn’t have any symptoms, I wouldn’t have known I had cancer had I not had hip pain after I gave birth to him. I’m indebted to my son forever; he definitely saved my life. I’d be here now with a four-year-old and a two-year-old and not even know I had it. So I thank him for that.

Thank you for sharing your story, Kelsi!

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Share your story, too!

Micheal Finds Hope with an Inoperable Brain Cancer by Joining a Clinical Trial

Kelsea Finds Purpose After a Grade 3 Brain Cancer (Oligodendroglioma) Diagnosis

From No Symptoms to Brain Cancer (Grade 2 Astrocytoma): Kelsi’s Story

Building a Family While Facing Brain Cancer: Edward’s Grade 3 Astrocytoma

Sam Chooses Hope in the Face of Grade 2 Brain Cancer (Astrocytoma with IDH1 Mutation)

Katie’s Unusual Accident Miraculously Uncovered Her Rare Brain Cancer

Tags young adult

AYA Patient Advocates Patient Stories self-advocacy Thyroid Cancer

The Patient Story Podcast: I’m a Young Cancer Patient

Post author By Chris Sanchez
Post date August 8, 2025
No Comments on The Patient Story Podcast: I’m a Young Cancer Patient

August 8, 2025

The Patient Story Podcast: I’m a Young Cancer Patient

(Ep. 01) From Cancer Caregiver to Patient: Taylor’s Story

What do you do when you get a cancer diagnosis? Where do you go? Whom do you call? How do you become your own patient advocate?

There are so many overwhelming questions that hit the people who’ve been diagnosed and those in their closest circles. Here is the first-ever episode of a new video podcast hosted by The Patient Story founder and lymphoma survivor Stephanie Chuang.

This inaugural episode features a special guest: Stephanie’s colleague at The Patient Story and fellow former TV journalist, Taylor Scheib, who shares her experience navigating a cancer diagnosis, shifting from her role as a patient advocate and the daughter of a cancer survivor — her mom, Kelly — to becoming a cancer patient, herself.

Interviewed by: Stephanie Chuang
Edited by: Chris Sanchez, Stephanie Chuang

Taylor shares the moment she discovered her diagnosis. She was sitting on her couch and casually checking her MyChart when the words “oncocytic carcinoma of the thyroid gland” appeared. (Editor’s Note: Oncocytic carcinoma of the thyroid gland is a rare, aggressive kind of thyroid cancer. It’s also known as Hürthle cell carcinoma.)

She was devastated by the diagnosis, but her background in patient advocacy helped her regain her footing. Her experience and knowledge built from working closely with both patients and caregivers helped her recognize symptoms and push for answers. This reinforces a crucial message: You are your own best advocate.

Taylor’s ability to listen to her body played a pivotal role in her experience. She had first noticed a nodule in her neck three years before her diagnosis, and had continued monitoring it through regular check-ups. When the nodule grew, she trusted her instincts and insisted on further evaluations, even when her concerns weren’t met with urgency. This underscores the vital lesson of trusting your body and speaking up when something feels off.

Taylor experienced further challenges when she tried to navigate the healthcare system. Her patience was tested by insurance hurdles, delays in scheduling surgeries, and having to wait for tumor board evaluations. She candidly discusses the frustration of feeling like just another case number. But her experience and resilience won through as she managed both the system and the mental toll of cancer. She found strength in support from her husband, family, and friends.

Taylor’s patient advocate experience also underscores the power of storytelling. At the start, it wasn’t easy for her to share her story publicly, but when she did so, she found it cathartic. Through opening up, she not only helped herself heal but also offered enlightenment and hope to others with similar struggles. Taylor’s authenticity is a good reminder that behind every social media highlight reel, real struggles do exist, and sharing them can be profoundly empowering.

Please scroll below to read the full transcript from The Patient Story Podcast Episode 1!

Name:
- Taylor Scheib
Age at Diagnosis:
- 30
Diagnosis:
- Thyroid Cancer (Oncocytic Carcinoma of the Thyroid Gland)
Staging:
- Stage 1
Symptom:
- Appearance of neck nodule that grew over three years
Treatments:
- Surgery: thyroidectomy
- Radiation therapy: iodine therapy (upcoming)

Transcript of This Interview

Podcast Summary
Introducing Taylor: A Patient Advocate Becomes the Patient
The Shock of Diagnosis: Getting News from MyChart
Emotional Fallout: Processing a Cancer Diagnosis
Self-Advocacy: Trusting Your Instincts and Pushing for Answers
Barriers and Delays: Navigating the Healthcare System
The Waiting Game: Coping with Uncertainty and Lack of a Plan
Community and Connection: Reaching Out and Trauma Bonding
Telling Others: Navigating Reactions and Support Systems
Supporting a Loved One: Tips for Friends and Family from a Patient Advocate
Sharing the Journey Publicly: The Power and Healing of Storytelling
Give Yourself Grace: Final Reflections and Words of Wisdom

Give yourself grace. But do it on your own time.

Editor’s Note: This transcript has been edited only for simple clarity.

Podcast Summary

When It Rains, It Pours
- Taylor shares her mom’s own brush with cancer and how this was her first touch point in joining The Patient Story.
- Taylor and Stephanie talk about the unpredictability of medical challenges, including those faced by cancer patients.
Introducing Taylor: A Patient Advocate Becomes the Patient
- Taylor discusses her role at The Patient Story and how it made her more aware of cancer and its impact.
- Taylor and Stephanie delve into the unexpected turn Taylor’s cancer experience took.
The Shock of Diagnosis: Getting News from MyChart
- The moment Taylor learned about her diagnosis and the emotions that welled up.
- The challenges associated with getting life-changing news like she did over a digital platform like MyChart.
Emotional Fallout: Processing a Cancer Diagnosis
- The immediate emotional impact when Taylor heard the word “carcinoma.”
- The questions that surfaced afterwards.
Self-Advocacy: Trusting Your Instincts and Pushing for Answers
- Taylor discusses the importance of self-advocacy and being a patient advocate in healthcare, as well as the power of listening to one’s body.
- She also opens up about her persistence in getting her nodule checked and how it helped her get results.
Barriers and Delays: Navigating the Healthcare System
- Taylor and Stephanie delve into the problems many patients experience when they try to navigate the healthcare system, including systemic delays and provider shortages.
- They also explore the frustration patients can experience when urgent concerns face logistical roadblocks.
The Waiting Game: Coping with Uncertainty and Lack of a Plan
- Taylor and Stephanie discuss how difficult it can be to wait for clear next steps post-diagnosis.
- They outline and explore strategies to help manage mental health during periods like these.
Community and Connection: Reaching Out and Trauma Bonding
- Taylor shares how reconnecting with old friends and the support from her community have been vital during her journey.
- “Give yourself grace, but also do it on your own time.”
Telling Others: Navigating Reactions and Support Systems
- Taylor and Stephanie reflect on how to talk about a new diagnosis, the variety of reactions from others, and maintaining boundaries in relationships.
Supporting a Loved One: Tips for Friends and Family
- They offer tangible advice for supporters: what to say, what not to say, and how to truly show up.
- “The small stuff means more.” — Some of the most thoughtful and meaningful gifts aren’t the most expensive ones.
Sharing the Journey Publicly: The Power and Healing of Storytelling
- Taylor explains why she chose to be open on social media and the cathartic role of storytelling.
- She offers advice for those who are also considering sharing their experiences.
Give Yourself Grace: Final Reflections and Words of Wisdom
- In closing, Taylor and Stephanie share uplifting thoughts on the importance of being a patient advocate, self-compassion, and owning one’s narrative.

Introducing Taylor: A Patient Advocate Becomes the Patient

Stephanie Chuang: Hi, everyone. It’s Stephanie here with The Patient Story. I’m just starting something new here. Wanting to be able to touch base more with everyone out there who’s finding us. If you remember, I had my own cancer experience when I was diagnosed suddenly with a non-Hodgkin lymphoma. Diffuse large B-cell lymphoma. I was 31 at the time, two months from getting married, and it was a complete whirlwind, to say the least.

But joining me today, I’m so excited to introduce someone who many people may be familiar with on our channel, Taylor. Taylor is on our team at The Patient Story. An amazing leader. And Taylor’s joining us for not-so-great reasons, but I am so grateful that she’s coming on to share her story. So, Taylor, do you want to share a little bit about yourself first, of course, outside of the cancer diagnosis?

Taylor Scheib: Stephanie, thank you so much for the warm welcome. So crazy being on this side instead of being the one guiding the conversation. I live in the Pacific Northwest with my amazing husband Justin and our dog Sage. She is our world. She’s our Chocolate Lab. And we love to hike. We love to be outdoors, and we love to camp. I’m originally from Illinois, from a really small town. My high school graduating class was 30 people, and so I’m from a very rural area. And I’m so grateful where I grew up, though I have amazing friends and family back home, I’ve lived away from home for a long time, so that’s been an interesting part of navigating my situation. But yeah, my mom is a colorectal cancer survivor. She was diagnosed with stage 3 colon cancer in November of 2023.

Stephanie Chuang: Taylor has been someone who’s led so many of these conversations with people, with patients, caregivers, care partners, and you know, the first personal touch point in joining The Patient Story was you introducing your mom, Kelly, to the process. She shared her story of going through colorectal cancer. And I’m so grateful again to both of you for being so open about that. But you may see that Taylor has a throat scar. Yep. And that her voice sounds hoarse. She doesn’t normally sound like that. I was on a work trip, actually, and then, got a late text from Taylor, and that was, of course, not usual. So, Taylor, just walk us through what was happening at the time.

The Shock of Diagnosis: Getting News from MyChart

Taylor Scheib: Yeah, it was a Monday night. 5:15 p.m.. I was about two weeks post partial thyroidectomy for a nodule on the right side of my thyroid. And that night, I just got a message from MyChart with my pathology results. And when I got the pathology results, it was out of sight, out of mind, from my surgery. Because not once did anyone say, “Hey, be on the lookout for your pathology.” I knew that the nodule and the mass were going to be sent off, of course, but I never thought that when I got those results, it would read anything but benign. And unfortunately, when I got those results, I was sitting on my couch, my husband’s cooking dinner. I get into MyChart, and the first thing I see is “oncocytic carcinoma of the thyroid gland.”

I immediately shoot up. I’m crying. My husband is like turning off the burners in the kitchen because I just bluntly, out loud go, “I’m pretty sure I have cancer.” And my husband goes, “What? What do you mean?” And that word ‘carcinoma’. I know what that means. And I don’t know if, before starting at The Patient Story and dealing with my mom’s diagnosis that I would have known what carcinoma meant. And so, because I am educated, because I’m privileged to work for such an amazing company where I’m learning so much every single day, I knew carcinoma meant cancer. We immediately came to this very spot, right where I’m sitting. We got on my laptop, we started researching, and the word oncocytic was a word I had never heard. I’d never seen or heard anything. Yeah, you start to Google. And that’s where my patient advocate story began, with my diagnosis.

Stephanie Chuang: Oh, wow. Yeah, there’s a lot there, I know. When I got the message, and then I got on the phone with you and you told me, first of all. I mean, it just took me right back to that feeling of, wait a minute. What’s going on? Right. And cancer and all the things.

And of course, my diagnosis was years previous. I was diagnosed back in December of 2016 and into January 2017. So it’s been a minute, which I’m very grateful for. But really, no matter how long the time, I remember that feeling of, What the hell just happened? And in your case, to spell it out for people, they would go, “Oh, you have this nodule, and you need to get it removed.” It’s benign, though, and nowhere, never did anyone ever say it might be something.

Now, I can understand, by the way, why, without the information of a biopsy and without other, maybe contextual clues that they might say this is benign. But at the same time, there’s this whole thing of, oh, my God, you said the results had actually been in for a while, and then it just popped up on MyChart. What was hitting you in that moment about your life? What were the thoughts and the emotions?

Emotional Fallout: Processing a Cancer Diagnosis

Taylor Scheib: Yeah. I already have tears in my eyes thinking about this answer. Because when you work for an amazing organization like The Patient Story, you’re hearing these stories every single day. You’re writing scripts and you’re creating this beautiful content. The underlying thing is tragic, and that is a cancer diagnosis. And so I would be lying if I said I never thought I’d get cancer. I’ve thought it. And you become just so much more aware of your body and the feelings that you’re feeling, and going to the doctor and getting your checks, getting your women’s health exams when you’re listening to these incredible people every single day.

And then when your mom goes through it as well. So I was shocked. But when the dust settled, I wasn’t that shocked because cancer can happen to anybody. And so being so young, I had just turned 30. My husband and I just came back from this incredible trip to Puerto Vallarta that he planned for my 30th birthday.

And this year was going to be filled with amazing trips and celebrating friends who are getting married. And you know, we’re doing all of those things still, of course. But in that moment, I just thought, what are the next six months going to look like? I’m such a planner, as Stephanie knows.

And I just kept thinking, what is this going to look like for me? And then the unknowns started. That started the spiral of, How do we know for sure that it’s all gone? But, going back to the emotional part of it, it was devastating for my husband and me. We have heard about cancer a lot in our families, so cancer was not new to us even before starting my job. But it was still just heartbreaking, devastating.

How could cancer be growing in my body for three years and I not know it, because I found the nodule three years ago? And so it was a hard moment. But because of my husband and his personality, and how just fun and outgoing and level-headed he is. It didn’t take me long from the initial spiral to come down and realize, this is not going to be my whole life. This is hopefully going to just be a moment in time. That was sad and devastating, but we’re going to look back at the beauty of it.

Stephanie Chuang: Yeah, that is so beautifully said. Thank you, Taylor. What I’m hearing you say is a few things. And by the way, I think this applies to people outside of cancer diagnoses. It’s like anything, anything in general, but definitely with healthcare, something that is about your body, maybe feeling like I’ve heard people, including myself, you know, talk about betraying us, you know, in a way. And you have the initial shock. There’s a lot of sadness, and there’s a lot of, how did this happen?

And then for you, what I’m hearing is that you went, okay, well, now it’s time to tackle this. This is not going to be my life. This is one thing that I’m just going to look at and get and get through. Right. And one of the things I know you exemplify, and I think you did before you started here, and maybe even more so now. But this idea of self-advocacy, which we hear so much about for you, started really early on because no one was really that concerned about your nodule except for you. And I think there’s a message in there. And what is that message for other people?

… you know your body best, and you know how comfortable you are with something inside your body or making a decision.

Self-Advocacy: Trusting Your Instincts and Pushing for Answers

Taylor Scheib: Yeah, that message would be, you know your body best, and you know how comfortable you are with something inside your body or making a decision. And for me, when I found the nodule. It was after my 27th birthday. We had just karaoke all night. It’s one of my favorite pastimes.

And I immediately went to the doctor, got bloodwork, got an ultrasound of the lump, and from there, it was my choice, what I would do with that information. So I continued getting my yearly exams, getting full blood work done. And last year was when I was like, okay, this is getting bigger. People are starting to notice it.

And I want to say this part as well, because I had a friend who, and this is where advocacy comes in many different ways, not only for yourself, but other people doing it for you. She noticed the lump, and her dad had thyroid cancer. So she asked me, “Have you gotten that checked out?” And I said, “Yes, I have.” But at that point, I realized that it’s been a year since I had done it previously. Why not get it done again? So I started the process all over. Routine blood work, ultrasound, you know, did that. And then I just wanted to get it out at that point because it was really large. It ended up being 5.7cm.

And so after that ultrasound, it was up to me to schedule the ENT appointment. You know, getting into the ENT took months. As we all know, those specialty appointments just take a long time to get into. So I finally got into the appointment in November, and my ENT was very casual about it. Looked at the ultrasound.

At this point, no one ever said, “Let’s do a biopsy,” and we don’t know if the biopsy even would have caught it anyway, so I’m not going to dwell on that. But she went, “Yeah, this is benign. The features are all normal. It’s your choice to get it out. Are you ready to have a scar? And I said, “Yeah, let’s go.” I just couldn’t do abs anymore. Like working out without it choking me. Being in bed, lying on it. I could feel it all the time at that point. So I advocated to get it out because I knew that was the best choice of action for me. It was also something my mom was telling me, “Maybe you should just get it out.”

But at this point, it had compromised that whole side of my thyroid. So I was going to have to get a partial thyroidectomy. So I was a little scared. But coming back to the self-advocacy part of this, you know your body best, and it’s okay to push and not necessarily get it removed. Did I push because they got me on the schedule, but I was non-emergent, so very limited spots to get. Surgery was scheduled for surgery in January. My insurance referral did not go through in time. So the morning of that original surgery in January, I’m on the phone with my ENT, and they’re like, well, you could just chance it. And I’m like, facing a large medical bill without the correct referral.

Stephanie Chuang: Right.

Taylor Scheib: And my husband’s in the military, so I knew there were a little bit more hoops to jump through with that type of insurance. And so I was on the books for April. It just automatically got pushed back three months.

Barriers and Delays: Navigating the Healthcare System

Stephanie Chuang: Yeah. So I just have to interject there because I feel like that part of the patient advocate story, right, is like it’s one of the parts of the experiences that we all experience to some degree, but isn’t talked about a lot, which is when you’re dealing with cancer. I remember, you know, getting told that this might be cancer and then being like, but it’s probably mono. And I was like, mono? And then it was like, but you need an ultrasound to one here, one here.

I got on the call to get it scheduled. And they said, “We don’t have an appointment for weeks.” And I’m thinking, you can’t tell me that there’s this thing and that I have to wait. So my point is that there’s the system, there’s like our situations, and this message of self-advocacy is, it truly is the squeaky wheel gets the grease or whatever, because you know, you know your body best what you just said and also you I mean, there’s some things that are out of our control. But you see, the system we’re working with and the unexpectedness of being like, how come I’m the only one who’s concerned about this? Did you feel that?

Taylor Scheib: Yes, I felt that. And it was. That’s been the whole thing over the last six months of seeing the NT. Getting the surgery scheduled is why there is no sense of urgency behind this. Every time I’ve seen my ENT. She’s so busy. When I had my follow-up for my surgery, it was not her. It was her [physician’s assistant] PA.

And it continued past my diagnosis. First of all, I found out through MyChart, which is a story I’ve heard, unfortunately. And every time someone I’m talking to tells me that story, instant goosebumps. Instant. Just feeling what they’re feeling through the screen. Then it was okay. Your case is going to be presented to the tumor board, and I want to make sure that I’m explaining what a tumor board is correctly.

So Stephanie, please help me with this color. But basically, when you have a unique case like mine, where we thought it was benign for three years, the mass was 5.7cm. And then on top of that, it is a less common subtype of thyroid cancer. It’s being presented to the tumor board. Well, they only meet once a month. So and it was at the end of the month when this happened in April, so it wasn’t going to be until a month for the tumor board.

Stephanie Chuang: You talked about self-advocacy, which we’ll talk about throughout the entire conversation. But this idea of waiting, waiting for your appointment, waiting for insurance to approve or not approve, waiting for a tumor board. For me, it was like getting a diagnosis on the phone and then being told by a family friend. You know, oncology is going to take forever at your large academic institution, so just go to the emergency department.

So that’s another tip for people, by the way: just get into the system. So you get seen, and then they put you somewhere that you’re supposed to be. But I was waiting to understand. I remember they did so many procedures, I had biopsies and bone marrow biopsies and lymph node extractions and blood tests upon blood tests. And then it was the whole week in the hospital. What is it like? We know it’s lymphoma. Is it Hodgkin or non-Hodgkin? Are we talking about, you know, aggressive or indolent? Are we talking… So? Not this period, and you’re still in it. That’s what I want to acknowledge, is you’re still in it, is it feels like there’s still no plan of action.

And I think for different people who are dealing with a diagnosis that it varies. Like sometimes it’s very short and, you know, right away for other people like you, you’re waiting weeks to understand, well, what are we going to do about this? So how have you been able to manage the mental part of that, the waiting part of it?

I have my good days. I have my bad days, more good than bad days, which is good. But it’s just about occupying your mind.

The Waiting Game: Coping with Uncertainty and Lack of a Plan

Taylor Scheib: It’s so hard, honestly, and I have my good days. I have my bad days, more good than bad days, which is good. But it’s just about occupying your mind. And when I was diagnosed and I started telling my close friends and family, I think, like trauma bonding, it’s very powerful. I have some friends that I don’t talk to every day, of course, but they’re your best friends no matter what. You pick up right where you left off.

So, as crappy as this was to get this diagnosis, it gave me a chance to actually kind of get closer with some of my friends. That has been such an amazing distraction since my diagnosis, catching up with old friends, catching up with your family again. My dad is calling me so much more, he calls all the time in general, but even more so now, my grandparents are reaching out like every so often. So I would say that’s been one solid thing.

Then the other part has been my husband. He has been my rock, of course, through this. Then we’re super active people. So we went and bought really expensive bikes to get on the trails. Stay active. And we’re just trying to find ways to continue living our lives. And for us, that is planning a trip. So, sorry, Stephanie, in the next year or so, I’m going to be going on some trips.

Stephanie Chuang: Oh, 100%. And you should go out and live your life 100%. No apologies. That’s 100% what you should be doing. And it makes me so happy to hear that. Those are the steps that you guys are taking. So many things came up when you were talking about that. You know, when you talk about trauma bonding, I’ll talk about the flip side of some of the experiences I’ve had, too. But this is the question of why we need a reason? But we do. I love that it just automatically gave this a thumbs up.

Community and Connection: Reaching Out and Trauma Bonding

Stephanie Chuang: People come from different places, whether you’re close. My friends started a campaign called #SpicyStrong. And I think it’s because when I was in my delirium, when they put me under for the lymph node biopsy, I had to go under full anesthesia, and I don’t know if I was going in or coming out, but I was super loopy. And so I was talking to the nurse. And I went, “I’m so spicy and strong,” or something, I mean, ridiculous. And then that just became the hashtag.

They printed shirts, and it got to people, and they were posting on social media. This is making me remember a lot of things I forgot. But people who are super close to me, people who I hadn’t seen in years. And that is such a beautiful part of this, right? One of the silver linings. I’d rather not have this, but the fact that I do and people like me are showing how much they think about me. I mean, what was the most powerful? I mean, I know you had lots of people reach out, but is there one situation where it took you by surprise, or a message that came from someone you hadn’t talked to in a while?

Taylor Scheib: Yeah, there’s one example where, and I’m sure you can relate to this, being formally in the news. You bounce around all these towns and cities, and you have friends everywhere, like I mentioned. And even when I just had the partial thyroidectomy, a group of friends in Denver sent me a care package, and that was before I even got my diagnosis. And so I was just so taken aback and just so thankful for them sending that. And so that was one thing. And then the other has been again, when I was in sports broadcasting, and I’ve heard from so many people from the little towns that I was covering, you know, seven, eight, nine years ago. And they’re commenting on my post, just saying, you know, we’re supporting you. This community is supporting you.

That’s just meant the world to me. And so those have been instances where it kind of stops you in your tracks. I don’t know if you’ve felt that way, but you just think, humanity is good. Yeah, yeah. Decency still. And there is a way to break through the screen. There’s a way to break through the phone call, the FaceTime, the message. And so I’m not sure if you felt that same way in those instances, but it stops you in your tracks, and you just realize, I have so many amazing people in my life.

Stephanie Chuang: Yes, 100%. It does resonate. Taylor. It’s 100% humanity is amazing. These are the beautiful moments of humanity when people come out. And, you know, I think a lot of the social stuff might be we are scared to, you know, reach out to someone from before because we think, well, what if they think I’m weird or they don’t even remember me or whatever? And these situations just take us completely out of that. Right. It’s like, no, I care about this person, or I just want them to know that I’m thinking about them, and it’s okay if they don’t reply or all those things. I think that is beautiful, and I wish more of us could get to that.

Yes, 100%. It does resonate. Taylor. It’s 100% humanity is amazing. These are the beautiful moments of humanity when people come out. And, you know, I think a lot of the social stuff might be that we are scared to reach out to someone from before because we’re like, well, what if they think I’m weird or they don’t even remember me or whatever? And these situations just take us completely out of that. Right. No, I care about this person, or I just want them to know that I’m thinking about them, and it’s okay if they don’t reply or all those things. I think that is beautiful, and I wish more of us could get to that.

… whatever other people’s reaction is, it is not about you. It is, of course, about concern for you and what you’re going through for the people who love you.

Telling Others: Navigating Reactions and Support Systems

Stephanie Chuang: I do want to touch on just because, for anyone who’s tuning in who is dealing with something again, it could be a diagnosis, cancer, or otherwise. It could be something else. When you have something to tell other people that they’re not familiar with. So I don’t know, sometimes I’ve found that military people find that with civilians. It’s like a walking-around language with sickness. Or maybe if someone’s announcing, say, a divorce and other people aren’t familiar with it, it could be any of those things.

I think the way other people react is very – it can be very jarring. And so I’d like to spend some time here, which is that, you know, people have different kinds of people in their lives. Some people have tons of friends, some people have a tighter circle and and all these things. I’ll start with an example, which is a newer friend, but I’d known her for a few years at least. More of a social friend, maybe.

But when I was diagnosed, she kind of disappeared, and she was one of the people I saw more often in that time frame. You know, a lot of my friends, to your point, are scattered around the country. And so it was very disappointing, and it was hurtful because here I am thinking about my mortality, not sure about what I’m going to do, worried about my hair loss, and all these things. I’m 31, and she just dropped off.

I just want to say this, not to harp on her as a person, but really to say, I think what I learned in that is whatever other people’s reaction is, it is not about you. It is, of course, about concern for you and what you’re going through for the people who love you. But for any of the weird stuff or the things that might be surprising, I would just say, broad strokes, the reaction is about their discomfort. They don’t know how to show up. They do care about you, but they’re worried about how they’re going to come across.

Maybe they think other people are talking a bunch to you, and so they’re trying to be respectful of you. Not right or wrong. But I do feel like that’s something I’d want to share with other people who are going through something, because it can be very tough when it’s unexpected. I don’t know if there’s something that resonated for you there a lot.

Taylor Scheib: It is. When I first started telling people, I realized very quickly, the way you present it will help determine how they react. So in the first couple of conversations I had, it was kind of very emotional. A lot of information, whoa, what is going on? But then the more I told people, the more I started setting the precedent of, right at the beginning, I’m going to be fine. I’m going to be okay. And then that’s when I think people went, okay, she’s she’s she’s going to be okay. And I have been very positive throughout this whole situation. And I think that has helped the way people are reacting.

Now, I will say on the positive side, kind of the opposite of what you experienced was I’ve gotten a lot closer to one of my high school best friends, like my childhood best friends. We have been friends literally since kindergarten. Wow. And we talk every once in a while. And when we see each other, we pick up right where we left off, like I’ve said. But we’ve talked more since this happened to me. And even when I just did the partial thyroidectomy, she called me that weekend, and I sounded like crap. Did not have a voice.

Taylor Scheib: She was crying on the phone. And it makes me emotional because that’s an experience where she’s showing up for me. And that, and her mom, and her. They are like my OGs, but I don’t see them very often. And so it’s kind of the flip side of what you experienced. But what you experienced with someone dropping off like that is likely going to happen for me in the next six months or however long this process ends up being.

But my mom experienced that. She was shocked by the people who she didn’t hear from again, or they didn’t show up for, you know, she had a benefit. They didn’t show up for that, or just a text message or a phone call. She was shocked by the couple of people. And you don’t forget those things, but I think it makes you become a better human in a way, and it makes you check up on your people a little bit more. That’s how I’m trying to spin it, at least.

Stephanie Chuang: And knowing you from what I know of you, Taylor, I don’t even think it’s a spin. I think you have that. That’s just the way you approach life. And I appreciate that. Yeah. No, 100%. I would say that was the only example of that. And everything was largely positive. I think I do want to call out that it may not happen to you, by the way. Right. I think it’s good to understand that if it does, though, that it’s normal and it’s not about you. It’s about them. And the other drop off, someone had warned me when I was just going through it, and she had gone through the same cancer just six months before I did. And she said, “Look, I’m struggling now that I’m done with treatment. People are like, you’re fine now.”

And then, the medical help drops off, and then the support also, because, well, you’re all good. And so that’s another conversation for another day. But I think my point is that at different parts of this, you know, it doesn’t mean, oh, I’m past this now. It’s that there’s different versions depending on where we are as patients, as people supporting other people, that these same emotions can come up or these same situations can come up. I also want the chance to drop in this video of my best friend in New York, she flew out with her husband, and at the time, I had to give myself blood thinner injections every day.

And those are freaking large. You know, I did IVF shots to freeze embryos at the same time. So I had to do the little needles and then the spring needles for the blood thinners. And, oh my God, it was terrible. And there’s a video of the way they supported me, trying to make fun sometimes. So, you know, the song that goes, shots, shots, shots, shots, shots, shots, shots. Yeah. So I was about to give one, and they go, “Oh, we’re just gonna sing the song for you.” And those are moments for sure where this is me getting loved on by people who are trying to lighten the situation for me in the way that they think might be helpful. So anyway, I think that’s awesome.

Stephanie Chuang: I want to ask about your mom. I know other people may not have this specific example where it’s like their parent also went through a similar diagnosis, but in terms of other people’s reaction to when you’re telling people what that was like, what’s your guidance to other people who feel like there’s an extra layer there? Whatever the reason is for you, it was that your mom had gone through her cancer recently, even. But for anyone who feels like there’s an added pressure in making sure the other person’s okay, what is your guidance there?

Taylor Scheib: Yeah, I would just say the biggest thing is give yourself grace, but also do it on your own time. That is so important. Yes, there’s pressure to tell people and update people and do all the things. I totally get that. But do it on your own time. You and I also think that what helped as well is I just I’m a very factual person. I’m blunt. I’m not going to sugarcoat things. So I think it was my messaging to them. These are the facts, I know. I don’t know anything else. And then I think that helps with them asking a bunch of questions.

You know, like deep dive spiraling. I think it’s just about giving yourself grace and giving the situation grace and not feeling like you have to always be giving updates to your friends and family or talking to them. Or it can take about a day to respond to someone. And my friends and family know that. They know that I’m very busy. My husband and I, Justin. We live a very active life. We are always doing something. And so yeah, I think it’s also if you get a text message, don’t feel like you have to respond right away or call them back or anything, right? This is on your own time, and that goes beyond just your friends and family. I’ve heard this so many times from people that I interview. You are the CEO of your life, of your body, of what you do. You are the leader of your own life. And I think that’s just so important.

Stephanie Chuang: Yeah. I mean, in the future conversations, I’m going to be pulling up from our patient advocate interviews because they have so much wisdom in what they’re saying. I mean, there are so many things that I want to talk to you about. Let’s talk for three hours. No, that’s fine with the audience. No. But I think, you know, whatever way you want to look at it. In terms of tips. There are some tips for the person who’s dealing with the diagnosis. Diagnosis? I agree with you, Taylor. 100% of the give yourself grace. I think in life in general, we could stand to hear that more often anyway, right? We give other people the compassion we don’t give ourselves. But on that note, give yourself grace and do not worry as much as you can about the other person’s reaction. You don’t have that space to carry that burden. So don’t tip on the other side.

Supporting a Loved One: Tips for Friends and Family from a Patient Advocate

Stephanie Chuang: I would give to people who are looking to support patients, because I’ve heard that a lot. Right? They might go, “Oh my gosh, my friend, my family member was just diagnosed. How can I support them?” I think in terms of messaging, I would always lead with whatever. If it’s an email or a text or whatever, or a voicemail.

No pressure to respond. I just wanted to, and that just takes off the pressure. So you get to send the message, and you’re letting them know. I get that you’re super busy and you’re occupied, and I’m not trying to take away your bandwidth. Another tip would be people ask about, “What can I send someone who’s just been diagnosed with cancer?” I’m going to ask you about this, too, so you can brainstorm. But I’ve often thought, if you can figure out if they know their treatment, I would base the care package on that. So if you know that they’re going through radiation, you can look, and we’re going to create this online to have some guides at The Patient Story, but it is to really look at what that modality of treatment is, and then try to send stuff. So, you know, I’ve sent organic lotions to people because they were going to get dry skin, blankets because one of the side effects was going to be feeling cold, things like that. I don’t know if there are things that you feel would be great advice for people trying to help people dealing with the new diagnosis.

Taylor Scheib: Yeah. You made such a great point. Blankets, things like that. But then I also think, like anything, that the person who’s going through the treatment or diagnosis, self-care, they should just put self-care out there.

So yeah, if it’s maybe organic products or maybe it’s a bath bomb, or of course, depending on their treatment, like we said. But for me, everyone knows I’m going through the waiting period. So I think a lot of people went, “How does she want to relax and sew face masks and bath bombs and electrolytes and different things like that?” So I would say anything that you can think of that person likes, that is self-care.

Books, a journal. You can never have enough journals. Something to preoccupy them, too, whether that’s like a coloring book or, you know, crossword puzzles. Not that I do any of that, I’m not going to lie. But if you know that person enjoys that kind of pastime. Right. Or maybe something like, this is old school, but a CD with their favorite songs on it.

Stephanie Chuang: Right, right.

Taylor Scheib: And I also think, too, when it comes to what you could give that person or send them in these moments, it does not have to be elaborate. The small stuff means more. And so maybe it’s a Spotify playlist, maybe it’s a $15 Amazon gift card, maybe it’s a gift card to their favorite restaurant. The self-care food.

Don’t overthink it. When you want to give something to that person. It can be something very small, even just a Venmo. I had a good friend, one of my best friends from home, send me a Venmo the day of my follow-up ENT appointment, and the caption was, Go get a cheeseburger after this.

Stephanie Chuang: Oh no, I love that it is. It’s the small things. It is that thought that counts. It is true. I think there are a couple of things that came to mind, too. And then we’ll and then we’ll wrap this conversation, which, by the way, I’ve enjoyed having with you. I think one quick note is if people are waiting. You’re not in the hospital. I know when I was waiting, and I was in the hospital for a shorter period of time, the nurses at one point said, “Don’t send flowers, or we’re telling people, don’t send flowers.” And that’s for when people are immunocompromised.

The knee-jerk sometimes is like beautiful flowers, but just to make sure.

… why I decided to share my story so openly was because at the core of who I am, I’ve always been very transparent, very honest, and I am an empath. I need empathy at the core of who I am, and that’s where the storytelling part of my life, like my whole life, has been storytelling at the core.

Stephanie Chuang: The other point that happens to matter both in terms of support, but also in terms of talking about messaging and not having to respond to text messages right away. What was helpful for me was to designate people who knew the information, and if other people needed to know or wanted to know about the diagnosis or where I was in that, specifically, they would go through those people. You know, it’s funny, we both were on TV before, but we were also very private people, actually, and I never imagined that I would bare my soul online or continue to have a presence after my news career.

But I had a blog, and the initial point of the blog was a it just helped. It was cathartic to get stuff out on, like just journaling, essentially. But then it was like, well, two things: if I can help other people not feel alone. And also then it helped in terms of people getting updates without me having to like constantly. But then that slowly became cathartic as a storytelling mechanism.

And by the way, you know, we’ll have like the storytelling, you could share yours. There are the prompts below in the description. But for you, Taylor, what has it been? This is my last question to you. What has it been like? I guess, how did you decide to want to share? I didn’t even realize you were going to share your story on social media. And it happened. But like what? What drove you to want to do that? And what has been maybe the most cathartic part of the process, especially a message for people who do feel like I’m private. I don’t think this is for me. Right?

Taylor Scheib: Yeah. I resonate so much with when you get out of a job that is so public, like we were in in TV, I don’t find myself posting at all anymore, but why I decided to share my story so openly was because at the core of who I am, I’ve always been very transparent, very honest, and I am an empath. I need empathy at the core of who I am, and that’s where the storytelling part of my life, like my whole life, has been storytelling at the core. I’ve always been a storyteller. You know, I can get along with anyone, and I just am amazed and mesmerized by other people.

I just love people so much, and they teach me so much about life and about the way you should live life. You know, there’s no guidebook to that, of course, but when I decided to share it publicly, I just wanted people to know that we say it all the time, that they’re not alone. They might be going through anything, and they’re like, “Wow, this person feels just a little bit like I do.” And that’s what keeps people going. And so behind sharing my story and trying to keep people up to date, I just. It’s kind of. It’s hard to explain. I just wanted people to know that everyone is going through something that is a big part of it, and to social media.

If you look at my Instagram, you will see my husband, my friends and family, my dog, and you go, wow, that girl has a really good life, and I do. We live an amazing life. But behind the curtain, behind social media. I’m going through something that really sucks, and I’m still finding ways to navigate that. So why not be open about that conversation? Let people in. I have a big tribe. I have a lot of people in my corner. I’m so thankful for that. But. Those strangers. Those are the strangers who come to you. Those are so impactful. Just the little comments of, “Wow, I thank you so much for sharing your story.” I’ve had so many people say, “Thank you so much for sharing your story.”

Taylor Scheib: And it’s not even about the cancer. It is about making sure you are getting your physical exams, that you are getting your women, your women, health, health exams, your PAP smears, your full blood work, whatever it may be.

I’m getting emotional about it because I feel like people get so lost in how they’re feeling, and they don’t know if it’s something, if it’s their life, because they’re really busy, or if it’s something underlying. And so I just want people to know that it’s okay to go to the doctor. It’s really scary. I totally get it. I was so scared to get this surgery, and now I’m dealing with voice loss, and I can’t get my voice back. So trust me.

Oh my gosh, it’s so, so scary. But it doesn’t have to be. And find your partner, find your friend. Find your family. Find someone like The Patient Story who can hold your hand through that. So that was really the ‘why’ behind sharing the story publicly. The most therapeutic thing for me in this process, honestly, has been talking freely like this. When I posted those videos, they were maybe 15 minutes long, and I had to cut them down.

But talking so freely about it has been so cathartic and so therapeutic for me. Those are like my blogs, like you did. I’m just doing it as a vlog. And after I get done, I go, “Wow, I kind of look cute.” I’m going to take a couple of selfies, you know? Yeah, go do things anymore.

You know, like those moments. You go, “Wow, I just feel so stinking good.” Yeah. And so that’s been super helpful. And then just keeping the lines of communication open with me, with my partner, with my husband, with my friends and family. You know, I just want to say this one part fast. My mom and I are best friends. We talk all the time, but recently we haven’t been able to talk a whole lot because she’s two hours ahead of me. We don’t work the same hours, or we do work the same hours. So, we’re constantly working. We’re not finding time to talk.

And last night, I told her, I said, “I’m sorry. I have not been able to call you. I have just been so busy. There’s been so much going on.” And she goes, “It’s okay.” And I go, “But it’s not okay.” She goes, “I know, but I don’t know what to say.” And so it’s there, that balance of course, she knows I’m busy. She’s not pressuring me, but she just wants to have a conversation like this. She wants to just openly have the conversation. And we did talk today, and it was very therapeutic for me. So open communication and just kind of setting up my phone and talking. But that’s also because I’ve been doing that for so long, and I’m a storyteller by nature.

Stephanie Chuang: So you are. You really are.

Give Yourself Grace: Final Reflections and Words of Wisdom

Stephanie Chuang: Taylor, I thank you so much for opening up, being vulnerable. You are such an empath. I know you bring it to your life and also to work every day, and I’m so grateful that you’re part of The Patient Story team doing that. Yeah. For anyone who’s you know, wants to hear the tips that were part of this conversation, I think we can come up with something that you can download. We’ll put it into a link somewhere on the description, not at the time of this discussion. Thank you for being such an open book. And looking forward to being able to share more of your incredible voice throughout all of this. So thank you.

Taylor Scheib: Yes. Thank you. And I’ll just leave this here. We’ll talk about it more, of course. But when I got my diagnosis, I didn’t feel overwhelmed. And that’s because, of course, in moments I did, but I didn’t overall because of The Patient Story. And I’ve said this so many times to my friends and family and to people who I’ve told my story to when I’m interviewing them, because now I’m openly sharing my story, is that when someone gets a diagnosis, I never want them to feel overwhelmed, and I want them to have a place like The Patient Story where they can go and think, wow, okay, I have someone, I have an organization that can support me. So when I got that diagnosis, I didn’t feel overwhelmed. And I want other people to feel that way. And that’s why I’m so passionate about our work at The Patient Story.

Stephanie Chuang: Yay! I couldn’t say that better. That was amazing. Thank you. Taylor. All right. And this was like the first of many conversations that will happen with Taylor with different folks. Really looking forward to this. All right. Great. So for The Patient Story, that’s Taylor. I’m Stephanie. Gift yourself grace. Take care. And we hope to see you next time.

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.

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A Young Mother and a Rare Diagnosis

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Advocacy and Self-Empowerment: Lessons Learned

Advice for Others: Faith, Family, and Resilience

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