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Stage 4 Stomach Cancer Surgery at 28-Weeks Pregnant: Arelly’s Surprising Story

Stage 4 Stomach Cancer Surgery at 28-Weeks Pregnant: Arelly’s Surprising Story

When Arelly received her stomach cancer diagnosis, a look back at her experience revealed just how critical awareness and advocacy are for patients navigating troubling symptoms. Her life as a mother and wife was upended in early 2024, moments after surgery exposed a malignant tumor. Her case underscores the urgent need for better screening and listening to every patient’s voice, particularly for symptoms like fatigue and persistent pain in individuals who are often told they’re “too young.”

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Initially overlooked by medical providers, Arelly’s symptoms, including pain after gallbladder removal and unusual exhaustion, were attributed to routine postpartum changes. Yet, a growing mass during her third pregnancy drove multiple ER visits and eventually life-saving surgery. The path to her stomach cancer diagnosis was marked by self-advocacy, perseverance, and partnership with her husband, who documented her symptoms and supported her emotionally through critical hospital stays.

Arelly R. stomach cancer

Family remains Arelly’s anchor and inspiration. Her experience balancing motherhood and cancer treatment highlights the unique challenges facing patients with young children. She describes learning to cherish “sunshine hour” visits, communicate openly with her kids, and plan family time around her treatment cycles, showing that quality of life is built on routine moments together. Online communities and peer support have helped her process grief and find solidarity with other patients.

Arelly now advocates for early screening and self-kindness, urging others to use their time well and embrace lessons learned. Her words, “Time is your biggest asset,” aim to empower those facing gastric cancer to prioritize courage, connection, and compassion in redefining their experience.

Watch Arelly’s video above and read through the edited version of her interview transcript below for more on how:

  • Listening to one’s body and advocating for answers is vital when symptoms are overlooked or dismissed
  • Family support, routine, and open communication are crucial in balancing treatment and parenting
  • Community connections with other patients provide essential emotional support and solidarity
  • Time spent with loved ones is the most valuable asset for any patient
  • The experience transformed Arelly into a stronger advocate, teaching her to value mindfulness and kindness in daily life

  • Name: Arelly R.
  • Diagnosis:
    • Stomach Cancer (Gastric Adenocarcinoma)
  • Age at Diagnosis:
    • 38
  • Staging:
    • Stage 4
  • Symptoms:
    • Nausea
    • Blood in stool
    • Side pain
    • Extreme fatigue
    • Excessive burping
  • Treatments:
    • Surgeries: gastrectomy, port placement
    • Chemotherapy
    • Immunotherapy
    • Targeted therapy: antibody-drug conjugate
Arelly R. stomach cancer
Arelly R. stomach cancer
Arelly R. stomach cancer
Arelly R. stomach cancer
Arelly R. stomach cancer
Arelly R. stomach cancer
Arelly R. stomach cancer

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.



My name is Arelly

I was diagnosed in late February of 2024 with gastric adenocarcinoma.

I grew up in Orange County and had a pretty happy childhood. My parents made it a point to go on vacation to Mexico every year, which is where my family is from, so I have really good, embedded roots there. I have three kids, and I am married. We just had our fourth anniversary last week.

I love to scrapbook. We love nature and visiting national parks. That is kind of our hobby, or was our hobby before I got diagnosed. We love music and going to concerts, and we spend a lot of time doing that as a family. Family is really important to me, and so is spending time doing things that I love, like music and the arts.

We saw Bruno Mars, and that was an amazing experience. We have seen Alicia Keys, Coldplay, and others. That was all pre‑diagnosis, and post‑diagnosis, I am like, okay, we have to see this person and that person. Bruno Mars is the number one.

I love shows that don’t allow recording because they make you be in the moment. We are on our phones all the time.

First red flags during my pregnancy and postpartum

The beginning for me really starts with my middle child’s pregnancy, my toddler, who is going to be four in May. I had a CT scan that was normal, and that pregnancy looked normal on paper. I had a lot of pain during it, but overall, everything was considered fine.

After I gave birth, I went through all the postpartum things. I ended up having my gallbladder removed about a year after he was born. It was via C‑section, and I was having a lot of pain on my right side. They removed my gallbladder, but after the removal, I was still having pain. I kept saying, “I am still having pain on the right side,” over and over. They would answer, “That is normal because you just had surgery.” Anytime I brought up a concern, it was, “That is normal.” Stomach issues were explained away as part of learning to function again without that organ.

My husband and I wanted to grow our family, so we decided to try for another baby. I had a miscarriage and then got pregnant again. Everything seemed to be flowing. I was not feeling anything out of the ordinary, just tired. I had a toddler, and I was pregnant. Then, out of nowhere, I had a mass protruding out of my umbilical area.

I kept bringing it up at my OB appointments. They said it might be a hernia, but they were not sure. They would just check it and send me on my way. As my stomach continued to grow, the growth pushed the tumor out more, to the point where I had two ER visits. On the last ER visit, there was leakage from the mass. That leakage concerned the surgeon enough to say, “We have to take this mass out. We do not know what it is. Your baby is going to be fine, but we need to remove it.” I was about 28 weeks pregnant in 2024.

The next day, they removed around a 15 cm mass. They told us it was a malignant tumor. That was when my OB recommended transferring my care to another hospital that could handle both the high‑risk pregnancy and the new cancer diagnosis. Hearing the word “cancer” and then “stage four,” and then phrases like “three to six months to live,” was devastating. I had pregnancy, postpartum, symptoms that mimicked postpartum, and a recent gallbladder surgery, all happening around the same time. It is all masked within everything you are already going through. It felt like we hit a wall, everything slowed down for a second, and then everything picked back up again. We have just been running with it since.

Symptoms that were overlooked or misattributed

The most prominent symptom was fatigue — extreme, extreme fatigue. There was one time when I had blood in my stool. I assumed it was hemorrhoids because I was pregnant, so that is what I told myself. Besides that, I cannot pinpoint anything dramatic. I did not have constant headaches, and if I did, I would think it was something like high blood pressure from pregnancy.

Mostly, I was just always exhausted, physically and mentally. Later, the symptoms became more visual. I could feel and see something strange in my belly. Looking back, I would also include the right‑sided pain, which I had treated as “normal” because I had been told it was normal after gallbladder removal. Now, when I talk about it, I can see that pain is a symptom too.

Feeling dismissed by doctors, and taking the H. pylori test

I do feel like I was dismissed at times, although there were also moments that made me think, “Why are they ordering this?” After my gallbladder removal, I kept going back to my regular doctor, saying, “I am feeling these things again. What is going on?” After I complained three or four times, he finally said, “Let me give you this H. pylori test.” I did the test before I got pregnant with my third, and it came back negative.

I know H. pylori can be a cause of some gastric cancers, but I do not really sit and wonder what caused mine or what I could have done differently. I do not ponder that because there is no point. That is the one thing he did, ordering that test.

Around the same time, my best friend had just gone through her own journey with breast cancer while pregnant, so I was very cancer‑aware. She is a survivor now, but back then, it was very fresh. I told my doctor, “My friend just had breast cancer. When should I get checked?” Instead of something like, “You should start at this age,” he said, “You know cancer is not contagious, right?” I remember freezing and thinking, “That is not what you are supposed to say to me.” I do not know if he realized he said it like that.

It was during COVID, and many appointments were by phone or in rushed in‑person visits. I do not want to say I lost trust in doctors, because there are amazing care teams out there, like the team I have now; but they are human, and sometimes they just do not see things or think about them. That comment and the repeated dismissal of my symptoms made me step back and lose trust in some of the medical staff at that time.

Why early screening and advocacy matter so much

That whole experience ties into how I feel about screenings, especially for gastric cancers. Screenings are so important. Right now, I am very passionate about advocating for earlier screening, because we are seeing cancer in younger people so often. That is one reason I do things like this: to create awareness that you are never too young to get cancer. Children get cancer. So why do we have these strict age protocols telling us when we “qualify” for colonoscopies, endoscopies, mammograms, and so on?

We need to take into account people’s histories and symptoms and what patients are actually saying. If someone keeps saying, “This does not feel right. I feel this and this,” that should matter. Doctors have the expertise; we do not. We are the patients. They are there to help us and to listen.

Advocating for myself in the emergency room

By the time I was going to the ER repeatedly, my advocacy became very simple and direct. It was like, “I am here now. I was here two days ago. You sent me home. I cannot be sent home today. Please, what is going on? Please take a look at this.”

It is important to be able to say, “I know my body. I know what is normal and what is not. Please listen.” The sad part is, I have heard many stories from people I have met in the stomach cancer community who said all those things and still were not heard.

So a lot of it becomes repetition: “This is not right. This is not right. Please look into this. What tests can I take? This is not my normal.” At one point, I was literally saying, “Look at this. This is not normal,” because sometimes they would not even physically examine me, just listen and move on. It was crazy.

My husband’s support and documenting the tumor

My husband has been such a key part of this. In the beginning, he took a lot of pictures of the tumor. It is funny because we have different sets of photos. I have certain pictures in my phone, and he has others in his. He took pictures of the tumor as it progressed. I did not want to look at them; I did not want to even see my own belly button with the tumor pushing out.

He did it so that when we went to the ER and doctors needed context, he could say, “This is what it looked like a week ago, and this is what it looks like now.” That helped us show that things were not improving; they were getting worse.

The last time we were at the hospital before they removed the 15 cm mass, the mass looked red. In the report I read later, they said it was infected. It had gotten to the point where the surgeon on call around 7 p.m. was worried about sepsis. He said, “Whatever it is, we have to take it out, because you can die of sepsis.” Hearing “sepsis” before hearing “cancer” out loud was very scary.

My husband has always been there, especially when I could not articulate or face certain realities. When I had blood clots, he would take pictures to track whether they were getting better or worse. He tried not to panic, because if he panics, I panic. He is the calm, and I am the “That does not look right” person. We really balance each other out in that way.

Hearing “cancer” while pregnant

By the time I officially heard “This is cancer,” I had already had major abdominal surgery while pregnant. I was barely moving and barely conscious in a small hospital room. I already had a feeling it was cancer. My OB called me because he was not at the hospital. He said he needed to come talk to me. I said, “I already know. Can you just tell me?” He did not want to tell me over the phone, but I insisted, and he finally said it looked like cancer and that he wanted to transfer me to UCI.

Once I was transferred, it became a night‑and‑day difference in care. They monitored me around the clock because they had two lives to keep stable: me and the baby. At UCI, there was a team of about ten people involved: baby specialists, oncology teams, and people focused on post‑surgery recovery. They were constantly checking me and checking the baby, trying to figure out exactly what type of cancer it was.

It was overwhelming. Sometimes there would be ten to fifteen people in the room in white coats talking to me at once. Even now, my husband and I sometimes sit in the quiet when the kids are asleep and ask, “Is this life even real?” It still does not feel real sometimes. I can picture myself in that hospital bed, in pain, with everyone talking, and I am half-listening, half-tuning them out because it is too much to process.

How I knew something was wrong before I got diagnosed

I had a sense that something was going on with me even before the big tumor showed up. Because I am over 35, I had NIPT testing during my pregnancies. It is genetic testing for the baby, and everyone thinks of it as a gender test, but it looks at more than that. With my third son, Benjamin, I had to do the test twice, and both times it came back inconclusive.

When I spoke with the genetic counselor and looked back at the report, there was a note at the bottom saying they could not get genetic information for the baby because something in the mother’s DNA was impeding it. Of course, I went online and started researching why other people’s NIPT results were inconclusive. I went down that rabbit hole and started wondering if something was going on with me.

I was also dealing with a lot postpartum with my middle child and was already in counseling. A lot of my biggest fears centered around not being able to take care of my children and something happening to me so that I would not be there for them. Looking back, I feel like my subconscious was preparing me, telling me this might be my reality.

The fact that the NIPT had been normal for my toddler but not for the baby also gives me a rough timeline. I know that in one year, I likely did not have cancer, and by the next, I did. That shows how quickly this type of cancer can progress. The type I have is rare and spreads like fire.

Motherhood, hospitalization, and protecting my kids emotionally

When I first got my diagnosis, I did not worry about my unborn son’s safety as much as you might expect. I felt deep down that he would be okay. I did not even focus much on myself. I just had this feeling, pregnancy‑wise, that he would be fine.

What crushed me more was being away from my older two kids for those two weeks in the hospital. My oldest was around seven, and my son was about one and about to be two. They did not really know what was going on. All they knew was that Mommy and Daddy had disappeared to the hospital for a long time. My parents and family stepped in and cared for them.

There were lots of video calls. We would tell them, “Mommy is at the hospital,” but I did not say, “Mommy has cancer.” They do not know what that is. We just tried to reassure them that I would come home soon.

When I started feeling better, the hospital had a “sunshine hour” where I could go outside for an hour, even while hospitalized. I would be hooked up to my IV while my husband wheeled me outside in a wheelchair. The kids would visit, and we would sit together and have something like a little picnic or cafeteria time as a family. I was still pregnant and recovering from surgery, but those visits meant a lot.

Eventually, I came home, and we focused on spending as much time together as we could before chemotherapy started while I was pregnant. I had a port placed, went through endoscopies, colonoscopies, and other testing. I got to be with my kids before Arthur was born.

After that, life became chaotic. There is the cancer itself and being a cancer patient; there is also being a mom of three, with two of them being two and under. That balance is what has kept me going. They are my motivation. I still deal with a lot of mental battles, but they keep me grounded.

How cancer affected my identity and personality

Cancer does not just attack your body; it attacks your personality and who you thought you were. I am in the middle of figuring out who I am now, accepting that I am a mother of three and also a terminally ill person who has to think about leaving all these things behind. That is something no one prepares you for. Almost as soon as you get a serious diagnosis, people start asking about your “dying wishes.” I have not confronted all of that. I process it in small pieces.

People who are not in this situation will say, “Take lots of videos. Take lots of pictures. Live your best life.” And I do try to do those things, but I am also so tired. So I focus on quality time. I want my kids to remember that when I felt okay, I was present with them. I know there are many days when I am knocked out after treatment and just have to rest, but when I do feel okay, I make an effort to say to my husband, “Let’s do something with the kids this weekend,” even if it is just the zoo or the aquarium.

I also had to tell my oldest daughter the truth at some point. She is going to be ten, and she is very aware. I was diagnosed in late February, but I waited until school was out around May or June. I wanted her to finish the school year without that weight. Over the summer, I told her, “Mommy has cancer,” so we had time to talk and for her to process it. Just yesterday she said, “Mom, I wish you did not have cancer,” and I told her, “Me too, baby.” I am glad she knows. I do not want her to feel, later on, that I hid it from her. With the little ones, it is different. My three‑year‑old just knows I am sick and that I go to the doctor, and that I have a port he can touch. He does not understand cancer.

Quality of life, treatment cycles, and everyday joys

Quality of life has become central to how I navigate treatment. Over time, you become an expert in your own body. I know my regimen: I get treatment every three weeks. The first week tends to be okay, the second is usually the worst, and then I get a few better days. We plan our lives, and especially family outings, around those better days.

On days when I am present, I try not to overthink it. We just do normal things: read a book together, work on my son’s preschool projects, or scrapbook with my daughter. I have always loved scrapbooking, and now I am teaching her how. Communication with my husband is key. I will say, “These are the days I think I’ll feel okay; let’s try to do something then.” Sometimes it does not work out, and the day is worse than expected. In those cases, I try to give myself grace and accept that it is okay not to feel well.

My husband has also been a 100% caregiver through this, and I admire him so much. He potty‑trained our toddler, handles diaper changes, and takes care of both the kids and his wife with a terminal illness. I try to remember to ask him, “How are you feeling?” because he rarely gets a break. When he does get a break, I am thinking, “Who takes care of the kids then?” Our parents help as much as they can, but they are older, and we try to save that help for when it is really necessary.

We also try to carve out time for our marriage, not just parenting. On good days, we might go to a concert or try to do something just for us. When I am feeling okay, I will say, “You take a break,” and I will be the supervising adult once the kids are asleep, hoping my body cooperates and there are no emergencies.

Hair loss, body changes, and rediscovering myself

My first year of treatment was strange in that I did not lose any hair. I did not look like what people imagine a cancer patient looks like. There is no one “look,” but society tends to picture someone thin, frail, and bald. I am a heavyset woman, and I still had my hair then, so I did not fit that picture. Then I started a new treatment, and with the very first infusion, I lost all my hair. That was when it really hit me.

Hair is wrapped up with identity. You think you will not care that much, but you do. Chemo also makes you exhausted and changes your skin. I will look back at a picture of me when I was pregnant and see this glow. Then I look at myself now, and I look different. I often put on makeup, and my husband will ask why. I tell him, “I do not want to feel like I am dead.”

It is not just physical. A heavy diagnosis brings heavy thoughts. You have to confront things like death and how it might happen. I was preoccupied with that in the beginning. Now I try to avoid overly dwelling on it. When I feel myself going down a bad spiral, I let myself feel it fully for a day. I ask, “What else have I been holding back? What else do I need to feel?” I let it all out. The next day, I say, “That was yesterday. Today is not going to be that day,” and I try to start over with better energy.

Holding on to small happy moments

Happy moments now are usually small things that might be easy to miss. I used to love cooking. That was my love language. If my husband liked noodles, I would think, “Let me make this noodle dish,” and it made me happy. Earlier this year, I had ascites so badly that I needed to be drained twice a week. I could not walk or even shower on my own sometimes, let alone cook. Cooking was just not possible.

When I do have a day where I can cook, it feels huge. I notice it, and my daughter notices it. She will say, “Mom, thank you for this food,” and I recognize that I did something important just by making a meal. Those are the happy moments now: sitting at a table, eating together, and being able to participate.

Sometimes our evenings are staggered. My daughter comes home from school, and we are immediately in night‑routine mode with the younger ones. We do not all sit and eat together. On the days we do manage to eat at the same time, we notice it. We say, “We are all here together,” and that becomes the memory we hold onto.

Finding stomach cancer community and online support

At first, having this diagnosis is very isolating. You do not know where to go. My best friend was my first lifeline because she had gone through breast cancer. We talked almost every day. Outside of her, I started finding online support in stomach cancer‑specific groups and foundations. I joined groups where people have gastric cancer like me, including younger parents.

We have lost many people from those groups, and it hurts because they become like family. It is powerful, though, to connect with people who share similar circumstances; not just the same cancer, but also being young parents, dealing with caregiving, finances, fear, and all of it. Sometimes we talk about cancer; other times we talk about normal things just to feel human.

November is a heavy month in the stomach cancer world because it is Stomach Cancer Awareness Month, and also when we tend to remember and lose many friends. There was a woman named Rita whose situation really resonated with me. My kids are half Cantonese, and her kids were half Cantonese too. She left behind very young children. Those similarities hit you hard.

We also have regular support calls every couple of weeks. Recently, we found out that one of our sisters is going into hospice because there is no more treatment left. Knowing I am headed to that reality, too, at some point, makes it all feel very close. We cry together, pray for each other, and try to lift each other up while still respecting that no two people experience this the same way.

Time, identity, and redefining what matters

One big lesson from all of this is about time. Time is your biggest asset. I am very careful with where I give mine now. Texting someone back takes time. Taking a call takes time. If I am giving you my time, it means you matter to me. I tell my friends and support sisters that, and they understand, because they are living it too.

I also realized how easy it is to let cancer become your entire identity. In the beginning, I think I fell into that. You are searching for information and community, and everything in your life becomes about cancer. Recently, I have been trying to pull away from that mindset and remind myself that I was more than cancer before this, and I still am. I am funny, I am creative, I am a mom, a wife, a daughter, a friend. I am not just a patient.

When I am in the hospital three times a week, I allow myself to be “the patient” in that space. But when I go home, I sometimes tell my sister or my friends, “I do not want to talk about cancer today,” and that is okay. I step back from social media if it gets too triggering. I try to read, do something small that feels normal, or just rest.

Ultimately, it is about redefining who I am and what I want the rest of my life to look like, however long that is. That is true for anyone, with or without cancer. If you are not happy with your life, you can ask yourself why and start taking small steps. Things do not change overnight, but small wins matter. I celebrate the small wins.

My final message: forgiveness, kindness, and changing the world

If there is one thing that sums up what cancer has taught me, it is that you have one life to live and time is precious. Spend it on what and who truly matters. Try to be forgiving of yourself. When I look back at my life, I do not see mistakes as just mistakes; I see them as learning. I learned, I grew, I changed. Holding onto self‑blame does not help.

The most beautiful thing you can do is be kind and spread love. That starts with being kind to yourself. Many people are not kind to themselves, and that makes it hard to be kind to others. You do not have to change the whole world with some huge gesture or have millions of dollars. If you work on yourself and try to be a good person, that is how you change the world: one small act at a time.


Arelly R. stomach cancer
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Categories
Appendectomy Cancers CDH1 Chemotherapy Cholecystectomy Clinical Trials Gastrectomy Gastric Adenocarcinoma Hereditary Diffuse Gastric Cancer (HDGC) HIPEC (Hyperthermic Intraperitoneal Chemotherapy) Lymphadenectomy Metastatic Metastatic Omentectomy Oophorectomy Patient Stories Peritonectomy Splenectomy Stomach Cancer Surgery Treatments

New Motherhood and Stomach Cancer: Dawn’s Story

New Motherhood and Stomach Cancer: Dawn’s Story

Dawn’s experience with Stage 4 CDH1+ Hereditary Diffuse Gastric Cancer

Dawn is a mom from northwest Indiana who thought her family was complete. She and her husband already had a ten-year-old and a nine-year-old when they learned they were expecting a surprise baby boy in her early forties. At 41, she approached this pregnancy much like her first two, expecting another normal experience and focusing on caring for her growing baby while juggling life with two older kids, unaware that stomach cancer was already developing.

Interviewed by: Keshia Rice
Edited by: Chris Sanchez

Dawn’s health began rapidly declining during her third trimester. Despite thankfully having a healthy baby, she endured symptoms like intense fullness, daily vomiting, dehydration, and ultimately, blood in her vomit, a warning sign that demanded urgent attention. Dawn’s persistence led to big changes in her medical care: hospitalizations, an emergency C-section, and a cascade of tests, including biomarker testing, that finally uncovered her stage 4 CDH1-positive stomach cancer (Hereditary Diffuse Gastric Cancer or HDGC).

Dawn C. stomach cancer

The genetic testing that revealed the CDH1 hereditary mutation, impacted not just her future but her children and extended family. As she navigated complex treatments, from chemotherapy and immunotherapy to HIPEC procedures and a swath of surgeries that included a gastrectomy, she became an empowered self-advocate. She challenged healthcare roadblocks, appealed insurance denials, and leaned on online patient communities for support and knowledge.

Through physical recovery, emotional uncertainty, and relentless self-advocacy, Dawn experienced profound transformation. She credits her faith and her family for sustaining her through exhausting treatment cycles and recovery, celebrating the small victories and moments of connection. She emphasizes that patient experience is not a solo effort: self-advocacy, family partnership, and compassionate care networks are essential for navigating stomach cancer.

Watch Dawn’s video above and scroll down for the edited transcript of her interview. You’ll learn how:

  • Symptoms in pregnancy, like fullness and vomiting, deserve careful monitoring and should not be automatically attributed to standard pregnancy issues
  • Self-advocacy is a life-saving skill; researching, appealing insurance denials, and seeking multiple medical opinions directly impacted Dawn’s experience
  • Family, faith, and community are crucial sources of resilience during prolonged medical treatment
  • Every patient’s experience is unique; personalized treatment decisions and persistence shape outcomes, not assumptions
  • Dawn transformed from a struggling patient to an empowered advocate for herself and her family

  • Name: Dawn C.
  • Age at Diagnosis:
    • 41
  • Diagnosis:
    • Stomach Cancer (Gastric Adenocarcinoma, Hereditary Diffuse Gastric Cancer)
  • Staging:
    • Stage 4
  • Mutation:
    • CDH1
  • Symptoms:
    • Persistent bloating
    • Feeling of discomfort in the stomach area
    • Weight loss
    • Dehydration
    • Feeling very full, leading to vomiting
    • High blood pressure
  • Treatments:
    • Chemotherapy: HIPEC, including through a clinical trial
    • Surgeries: Gastrectomy, splenectomy, cholecystectomy, oophorectomy, appendectomy, omentectomy, peritonectomy, lymphadenectomy
    • Immunotherapy
Dawn C. stomach cancer
Dawn C. stomach cancer
Dawn C. stomach cancer
Dawn C. stomach cancer
Dawn C. stomach cancer
Dawn C. stomach cancer

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.



Hi. My name is Dawn

I am from Northwest Indiana. I was diagnosed with gastric adenocarcinoma, also known as gastric cancer, in September 2024. At that time, I was 41 years old. 

My husband and I were blessed with a surprise baby boy. We also have a ten-year-old and a nine-year-old, so we thought we were done. But God had other plans. I was pregnant and due in October 2024. All my pregnancies had been normal, and I felt okay for most of this one, even though I was older at 41. Everything was fine until about the third trimester. Around August, or maybe June or July, I started to feel unwell.

My initial symptoms

I tried to keep pushing through, make sure I drank enough water and ate well, but the baby seemed fine, and I just couldn’t come around; I just was not feeling well. 

I’d eat and drink throughout the day, but at the end of the day, I couldn’t take any more. I’d be so full that I’d get sick. I told my OB doctor overseeing my pregnancy, and since the baby seemed fine and there were no other alarms, we chalked it up to morning sickness. But it progressively, slowly got worse. 

I got dehydrated and went to a local IV drip bar for hydration a few times. I ended up in the ER twice for dehydration. The doctor said, “You’ve been complaining about this for a while. We can’t do much, but if you go to the ER, maybe they’ll give you a scan.” 

They didn’t want to scan me in the ER because I was pregnant, so they did an ultrasound of my gallbladder, and that was fine. No bowel obstruction or other issues.

We still just didn’t know what was going on. All I knew was that I just wasn’t feeling well, and I had never had morning sickness with my other pregnancies. I didn’t feel comfortable taking the Zofran because I was pregnant and wasn’t really nauseous, just full every day. This continued with the baby still growing fine, but I started losing weight, even though I was in my third trimester and should be at my biggest. 

I tried to eat as much as I could to help the baby grow, but I was still throwing up. At one point, I threw up blood. There wasn’t much we could do since the baby seemed fine and was measuring okay. 

Eventually, I went in for a checkup, and my blood pressure was high. That raised alarms, and I told the nurse I’d been getting sick nearly every day for the last two months of the pregnancy.

I had an emergency c-section and got admitted

The nurse told me, “I don’t think you’re going to be leaving here today.” They drew blood work, and I was critically low on electrolytes, especially potassium. The high-risk doctor said, “We’re going to have a baby today.” 

We had a C‑section, and everything was good, though I was nervous because I hadn’t been feeling well. But the baby was healthy. We just missed the NICU by a few pounds; he was born at 5 pounds and a month early, but all was well.

Later that night in the hospital, I ordered a meal, ate a few bites, and felt full; again, something wasn’t right. I got sick, and there was blood, so that prompted more action. 

Now that I was in the hospital, we wanted to find out what was going on. The GI doctor ordered a CT scan; next, they wanted to do an endoscopy.

When I first heard the words “gastric adenocarcinoma”

The next day, I had the endoscopy. I had never had one before. You’re sedated for it, and I went down, it was done, and next thing I knew, I was in recovery. 

The GI doctor came in and told me they found something. This was the first time I’d ever heard the words “gastric adenocarcinoma.” 

To me, it seemed like a foreign language. I didn’t know what it meant. He said “stomach cancer,” and when you hear those words, that just wasn’t on my radar whatsoever. 

To my knowledge, I didn’t have any history or family history of stomach cancer. I was just trying to process it. He was quite certain about what he saw, but they did a biopsy anyway. 

I got the phone call a few days later. It was confirmed, I had stomach cancer.

Looking back, yes, I had symptoms. It wasn’t true that it came out of nowhere. I didn’t have debilitating signs, but I had bloating for years, discomfort, and sensitivity in my stomach area, though I couldn’t pinpoint what it was. I didn’t have acid reflux or GERD or nausea, or vomiting until the pregnancy. I’d seen a few doctors, even a GI, searching for answers about my stomach. I had been told different things: constipated, try a different diet, or do autoimmune or genetic testing. I did a lot of chasing from 2020 to 2023, looking for why I didn’t feel well. I chalked it up to prior pregnancies and C-sections, or just lifestyle. 

There were signs, but nothing super alarming, and pregnancy definitely masked it.

Parenting through cancer: feelings of loss

So my son was born on September 26th, and I was officially diagnosed on September 30th. 

This entire past year has been a blur, a lot of lows. My mind hasn’t always been present and focused on my son, when so much of it has been about treatment, diagnosis, and surgeries. 

Thank God for my family, who helped care for him, especially since we traveled a lot for doctors, treatments, and surgeries, and the days when I just needed sleep. 

I feel robbed, almost like a shell of myself. I feel like I’ve missed the first year of his life because I’ve been here, but I haven’t really been here.

With the cancer diagnosis, there’s so much that comes with it. It’s humbling and puts things into perspective. You think about what matters and what’s frivolous. 

All of our relationships, especially with my husband, have strengthened. There are moments of weakness, and sometimes I feel it’s unfair for him to deal with this right now. But he’s been a rock and allowed me to heal, research, and be comfortable with my care team. 

We’ve grown in faith, hope, and love, with our beautiful children. We are determined not to take a second for granted.

Hereditary Diffuse Gastric Cancer: Learning about genetics

I had never heard of CDH1 or hereditary diffuse gastric cancer before my diagnosis. 

When the genetic counselor called to say I was CDH1 positive, I had no idea what that meant. That’s when the research began: what does this mean for my family, children, sisters, and mom? Everything changed. 

There are different types of stomach cancer, and statistics, survival rates, and understanding the disease have become important. The lack of research and funding is scary, but I’ve learned so much from online communities advocating and sharing stories. That’s helped me gain strength and keep fighting.

Once I found I was CDH1-positive and that it was inherited, it was another blow. Now not only I but my family was affected too; my children, who’ll explore options for surveillance or surgery when they’re older, and my mom and sisters. 

My dad passed away from colon cancer in 2014, and we hoped the gene was from him, but my half-sister on my dad’s side (who recently passed from cancer) did not have the gene. My mom got tested and, unfortunately, is a carrier, prompting more family members to get tested. It set off a domino effect. Now, cancer is affecting everyone close to us.

My treatment: chemotherapy, HIPEC, and surgery

Meeting with the oncologist, I had no idea what to expect, even though my dad had gone through cancer. I started treatment and also saw a surgeon who wanted to remove part of my stomach due to the blockage and inability to eat. 

I was down to 98 pounds, very ill, and had little energy. I tried to eat and drink, but I kept getting sick. The lesson: with cancer, you want things done right now, but you have to have patience; it’s a wait-and-see process.

I had to wait for treatments, scans, and not rush into surgery, especially when I learned about the CDH1 gene. I started chemotherapy at our local university hospital. I had side effects like neuropathy, cold sensitivity, and nausea. 

In November, I also had a laparoscopic washing to check for spread, learning that with hereditary diffuse gastric cancer, tumors aren’t easily visible on scans. A lot of how the treatment goes depends on how I feel.

I responded well to chemo, added immunotherapy, and by December, I was eating again. Even if scans didn’t show clear shrinkage, I felt the difference.

The hospital had a clinical trial for HIPEC (hyperthermic intraperitoneal chemotherapy)—important because traditional chemo doesn’t always reach peritoneal spread. My insurance denied the trial as experimental, but my surgeon fought for it; I appealed and sought other clinical trials elsewhere. While off chemo waiting for HIPEC, symptoms worsened, and I had to get back on chemo. Insurance eventually reversed the denial, and I was able to receive HIPEC and, later, gastrectomy.

In June, I had my first HIPEC; the procedure was tough but successful. In July, I had a second HIPEC combined with gastrectomy. The 12-hour surgery removed my stomach, spleen, gallbladder, ovaries, appendix, omentum, part of the peritoneum, and 45 lymph nodes. Three of the lymph nodes were cancerous. Since then, I’ve been recovering, resumed chemotherapy on a reduced dose, and continue immunotherapy.

A feeding tube was placed but removed after a week; I’ve been able to maintain my weight since and eat mostly normally again.

The importance of self-advocacy in cancer care

Some doctors say, especially for stage 4 patients, “It’s only palliative care, and surgery isn’t an option.” Others follow strict guidelines without options. I knew that kind of doctor wasn’t right for me. 

My persistence and advocacy were crucial. If I hadn’t advocated for myself, done research, or looked at every option, things could be different. I may not be here had my stomach been partly removed earlier. I had to fight for TPN nutrition when I dropped to 98 pounds, and it saved my life. 

It’s vital to know your options; if you don’t know, you might miss a lifesaving opportunity. Take charge. Every case is different, and you have to do the work.

I had to find a new normal after surgery

Post-surgery, life is still settling. There’s a lot of anxiety with upcoming scans and uncertainty. It’s not back to normal; it’s a new normal. I try to live each day as best I can, taking the good with the bad, one step at a time, not thinking too far ahead. 

I’m feeling well now between treatments and hope to go to Washington to advocate for stomach cancer; to be a body in the room, a voice, or a shoulder to cry on. 

I thank God for leading me and for my children. I’m taking it one day at a time, cherishing moments with my boys, getting outside, and eating well. I want to share the love I’ve received and help others; not focus on disease, but health. For work, I’ll probably go back soon, but not very soon.

My family has really supported me

No questions asked. If I need anything: my mom to watch the baby, my husband to help, my mother-in-law or sister-in-law, they’re here. 

We wouldn’t be where we are without family and friends, even our church family. 

The kids keep me moving; I can’t wallow too long because I need to get up for them. For as tired as I am, they need me. I’m determined to be here for them, and I’ve needed them more than they know. They’ve been my rock.

Messages for my kids, and for myself

I wish my boys had never had to watch me go through this. I want them to know how proud I am, how they’ve been the light of my life. They give me the strength to keep fighting, to get up each day with energy, hope, and love. Their light gives me mine. 

I thank them for being strong, but also want them to know they don’t always have to be; their feelings are okay. We must enjoy today’s moments. Nobody knows what tomorrow brings.

To myself last year, I’d say: It’s all going to be okay. God’s got me and will show me the way. I have angels, my dad, sister, nephew, and grandparents, watching over us. 

Cancer’s an awful, awful disease. It robs us of joy and love, and it’s not fair. But there’s hope, and everything will be okay.

My advice for other patients

To other patients going through treatment or facing a diagnosis: God bless you, I pray for your strength, and want you to know there’s hope. Do for yourself what you would for someone else. Fight! 

Don’t give up. Do research, talk to your doctor, and listen to yourself. Ask for help. There are amazing communities that will advocate, help, and show up for you. Lean in; you don’t have to fight alone. 

Take each day as it comes. No one is promised tomorrow, and every day is beautiful.


Dawn C. stomach cancer
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Categories
Bile Duct Cancer Chemotherapy Immunotherapy Patient Stories Radiation Therapy Treatments Y-90 radioembolization

Alicia on Motherhood, Advocacy, and Spreading Joy Through Flowers After Her Bile Duct Cancer Diagnosis

Alicia on Motherhood, Advocacy, and Spreading Joy Through Flowers After Her Bile Duct Cancer Diagnosis

In the months after her daughter was born, Alicia tried to push through symptoms that felt inconvenient but familiar, including nausea, fatigue, headaches, and a growing pain in her upper abdomen. Like many new parents, she put herself second. It wasn’t until just before her daughter’s first birthday that Alicia learned she was living with stage 4 cholangiocarcinoma, also known as bile duct cancer, a diagnosis that reshaped how she approached time, family, and purpose.

Interviewed by: Keshia Rice
Edited by: Chris Sanchez

Alicia emphasizes how quickly her diagnosis moved from initial emergency room visit to confirmed bile duct cancer, largely thanks to attentive physicians who did not dismiss her symptoms. She describes the emotional weight of being a young parent with a life-threatening disease, noting the compounding anxiety of wanting to protect her child from negative impacts while managing her own health. Amid appointments, chemotherapy infusions, and the adjustment to new routines, Alicia found unexpected gratitude in each day.

Alicia P. bile duct cancer

Taking an active role in her treatment, Alicia sought multiple second opinions, advocated for Y-90 radioembolization (highly targeted radiation treatment), and joined a tightly knit group of young mothers with cholangiocarcinoma. Her openness to clinical trials and collaboration with leading specialists highlights her practical approach and willingness to explore advances in care. Alicia’s experience extends beyond medical treatment into self-discovery. She speaks candidly about the evolving sense of identity that accompanies visible side effects like hair loss.

Purpose remains central throughout Alicia’s story. She channels energy into her Growing Kindness flower project, giving bouquets to oncology centers, neighbors, and strangers, and shares seed packets during winter. The joy and community she creates are gifts she hopes her daughter will carry forward, living with intention, spreading kindness, and noticing how a single act can create positive ripples. Alicia aims to help empower patients, families, and care partners to seek connection, advocate for themselves, and embrace each day’s value alongside their challenges.

Watch Alicia’s video, and read her edited interview transcript below. You’ll learn more about how:

  • Self-advocacy is essential. Alicia pursued multiple opinions, researched treatment options, and credits her persistence for receiving life-prolonging therapies
  • The disease, not the patient, determines treatment response; Alicia highlights the importance of compassionate care and patient effort
  • Meaning and purpose are possible even after drastic life changes. Her involvement in the Growing Kindness project illustrates transformation and hope
  • Community matters: Alicia found critical support in a Facebook group for young mothers with cholangiocarcinoma
  • Living with intent and kindness impacts others, especially children observing their parents’ experiences

  • Name: Alicia P.
  • Diagnosis:
    • Bile Duct Cancer (Cholangiocarcinoma)
  • Age at Diagnosis:
    • 33
  • Staging:
    • Stage 4 (Metastatic)
  • Mutations:
    • ARID1A, CDKN2A, CDKN2B
  • Symptoms:
    • Nausea
    • Persistent diarrhea
    • Extreme upper abdominal pain (right side)
  • Treatments:
    • Chemotherapy
    • Immunotherapy
    • Radiation therapy: Y-90 radioembolization
Alicia P. bile duct cancer
Alicia P. bile duct cancer
Alicia P. bile duct cancer
Alicia P. bile duct cancer
Alicia P. bile duct cancer
Alicia P. bile duct cancer
Alicia P. bile duct cancer
Alicia P. bile duct cancer

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.



Hi. My name is Alicia

I reside in New England. I am 36 years old. 

I was diagnosed with stage 4 bile duct cancer or cholangiocarcinoma in October of 2022, about two weeks shy of my daughter’s first birthday. I have innumerable lung lesions, and I have a grapefruit-sized tumor on my liver.

How I discovered that I have cancer

I had experienced postpartum body changes, which are absolutely normal. However, I noticed an increase in feeling nauseous, headaches, lack of appetite, even though I was nauseous, and I was trying to manage that fatigue and upper abdominal pain in the right upper quadrant. I believed these changes were due to hormonal shifts from being in a postpartum realm or increased stress from my career. I had recently taken a new job, and all those things together led me to believe it was just stress. My right upper quadrant pain increased over a couple of months before diagnosis. One day, my husband finally said, “I think it’s time for you to go to the ER and get checked out. This just doesn’t seem right.” But as most people do, especially parents, we tend to put ourselves last, and I kept pushing off my symptoms, chalking them up to stress and hormones.

One Monday morning, I worked from home until about noon, drove myself to the ER, went in, and was immediately guided into scans by physicians who believed me and didn’t dismiss my symptoms. I am really grateful for that. That’s a story we hear a lot: young, healthy individuals go to the hospital, and their symptoms are just shoved off to the side. They immediately sent me in for scans after palpating my abdominal region, and you could actually see almost a raised area over the liver. Scans led to additional scans in different types of machinery, and I could tell by how quickly things were moving and that I was being shuffled around that there was something gravely wrong. When the physician came into the room, I could tell he was really trying to keep it together.

Before he shared the information with me, he asked, “Do you want to call somebody, have them on the phone? Do you want to wait for someone to be here?” I just said, “Lay it on me. What’s going on?” Unfortunately, they had to tell me they could see three masses on my liver: one the size of a grapefruit, two smaller ones the size of golf balls, and many, many small nodules in my lungs. I drove myself home, calling my husband and my mother frantically to meet me at my house and pick up my daughter from daycare. 

I’ll never forget sitting in the backyard at about 5:00, as my husband held me and we just broke down on the ground and cried. 

The next few days and weeks were a whirlwind of tests, appointments, and phone calls to insurance, employers, daycare, all of the above.

Very quickly, I was given the news that I had stage 4 cholangiocarcinoma, an extremely rare and extremely aggressive cancer of the bile duct. It is considered a liver cancer, even though it comes from the bile ducts. Mine is intrahepatic, meaning it came from inside the bile duct attached to my liver and metastasized to my lungs as well. It is considered stage 4 when it has shifted to other organs, and I am considered in palliative care. They consider that I will never be cured. 

I started chemotherapy within a few weeks and have been receiving chemo infusions for three years as of early October this year.

Parenting with cancer: the emotions and challenges I faced as a new mom

As a parent, I think how you handle things, especially stress, changes with experience over time. It is a learned skill, not something taught, and it takes a very long time. I don’t think you’re ever done being a parent, and I don’t think you’re ever done learning as a parent. 

Learning about my diagnosis as a very new mom and new parent was detrimental. The stress, anxiety, and worry were exponential. It’s very hard to put into words. You’re not only worried about yourself anymore; you’re worried about this little human and your family, and the impacts on everyone.

With the aggressive nature of my cancer, everyone immediately goes to “Doctor Google” when diagnosed and starts reading as much as possible. It was very grim out there. Cholangiocarcinoma has historically been considered an older person’s cancer; it is usually diagnosed in people aged 50 or 60. There is a big increase in young patients, which is very scary, and hopefully, with more exposure, it will help increase funding.

Having people shed light on bile duct cancer will help increase funding and start to help younger people diagnosed with it. As a young parent, you’re so terrified of everything out there for your child; the last thing you want to do is add any negative impacts to their life.

How I managed my fears and planned for the future

Given the rarity and aggressive nature of my cancer, I did not think I would still be here today. My mental state when I was diagnosed was very bad as a parent. I immediately thought, “I’m not going to be here in a couple of years. I need to get everything settled, like wills, accounts, estates, and trusts, just to make sure that she’s all set.” Three years down the line, I’m able to tell you that tomorrow is promised to no one, and I am still here and so grateful for that. Every day is a blessing.

I live in a much different capacity, living for today. In the moment, I still have worries, and I still do a lot of planning as a bit of a Type A person. But we find joy in every day and take issues as they come, navigating them together as a family. 

I am a much better parent having been diagnosed with cancer: more patient, more kind, and more giving. I honestly think the positive aspects of the way it will change my daughter’s life will outweigh the negative ones someday. Having someone in your life who has cancer, illness, or hardship makes you a kinder individual, and I hope that’s the type of person she becomes.

From my ER visit to my diagnosis

My diagnosis came very quickly. Doctors were amazing in moving swiftly. I live in a very rural area, but close to Boston, Massachusetts, a hub of medical activity. I believe being young alarmed the doctors. Why does this seemingly healthy 32-year-old, who just had a healthy singleton birth, immediately have cancer? Everyone feels for you and wants to move quickly. With the aggressive nature of cancer, they wanted me to start chemotherapy as soon as possible.

From my ER visit to diagnosis, it was about ten days. We saw scans and large masses, so we knew there was cancer, just not exactly which kind or what chemotherapy to use. At first, I thought it was liver cancer, and then it was revealed to be cholangiocarcinoma. All of my blood, liver, and kidney functions were completely within the normal range. If I had only received blood tests in the ER, there would have been no way to tell I actually had cancer, and my symptoms would have been brushed off. The scans, ultrasound and then CT were crucial. 

My first symptoms started around June 2022, and I didn’t go to the ER until September.

Learning about an uncommon cancer

As is common for many cancer patients, I went straight to the internet after diagnosis; I’m a Type A person. I did as much research as I could and was up day and night reading about every aspect of the cancer, every possible treatment. I keep a running notes list in my phone of every potential treatment, chemotherapy, or alternative, that I see. There may be a treatment for kidney or pancreatic cancer not yet approved or known for bile duct cancer, but it could benefit me, so I keep those ideas in mind.

I was also reading the negative side, online and on social media, especially Facebook and Instagram, groups of people with bile duct cancer; there’s a lot of doom and gloom. Unfortunately, those diagnosed who are older may not be as healthy and may have other bad habits; they may already be in poor health when diagnosed.

From the outside, I was a perfectly healthy individual, working out, taking vitamins, no other medications, never broken a bone, never had a stitch. Online, all you read is cases where people are gone within weeks, months, or less than a year. The grave statistic: the five-year survival rate for stage four is 2%, which is very low. Most patients have other health issues and are older, but that’s not clear when you’re Googling at two in the morning after a diagnosis. Where I am today is a much different position. I see myself hopefully beating that statistic.

There’s so much fear among Facebook groups, and sometimes misinformation gets shared, but I salute the cholangiocarcinoma group on Facebook. There’s a patients-only group that promotes factual information and less emotional sharing. You’re not reading posts from someone’s distant relative grieving, but sharing direct patient experiences only.

We even created a subgroup shortly after my diagnosis for young mothers with cholangiocarcinoma; mothers with children 18 and under. There are only about 40 of us. That camaraderie has been instrumental in getting me through tough days. Most cholangiocarcinoma patients are stage 3 or 4 at diagnosis, considered palliative or terminal. Being able to share not only the motherhood journey, but also the cancer journey alongside that, has been so helpful. We’re all there for each other.

My day-to-day life with cancer and how I maintain normalcy

For me, three years in, I have a flow for day-to-day life. I am, again, a unicorn. I am on the same line of care treatment as I was at the beginning. I’ve had only one small change, and that is unheard of in most people’s cancer journeys with cholangiocarcinoma. Most cancers, especially this one, mutate quickly, and people run out of options. Everybody I knew in my support groups who was alive before is no longer with us. I am extremely blessed.

Day-to-day normalcy is possible for now. At home, we know my nadir, the periods when chemo side effects are worst, and plan accordingly. I still receive chemo infusions every two weeks, and the same kind. Three years in, I have my routine down for chemo week and the week after. In between, I am again extremely lucky. This is not normal for any cancer, especially cholangiocarcinoma; most treatments fail quickly for others.

I am on an aggressive chemotherapy regimen and have had a dose reduction, now going every other week instead of a 21-day cycle. However, I have physically managed side effects and stayed clinically stable. We utilize daycare for days when I am not well enough to care for my daughter, prepare food in advance, and make sure prescriptions and necessities are ready. Three years into this, I know my body well. Life looks very different. I was very career-oriented and had to retire a year into my diagnosis. Now I spend my days managing symptoms, trying to get things done at home, and being a mom.

I am so lucky for that. I never thought I’d have as much time with my daughter. Cancer affects me in many ways, and I am not lucky to have it, but it has also blessed me, giving me so much time with my daughter, far more than I ever could have had working full-time.

Another part of my life now is continuing my passion for flowers and gardening. My family did this out of necessity for generations, and I grew up gardening. I am part of a project foundation, a nonprofit called Growing with Kindness, growing and giving away flowers. I started doing this before cancer, the pandemic, and motherhood. It has given me the most purpose in my life.

Growing Kindness: how we spread joy through flowers

Gardening and the Growing with Kindness project have given me so much purpose in a time when I felt lost. Being career-oriented was my life’s purpose, aside from being a mom, and I had to find my way back to myself when I stopped working. I did this by growing as much as possible, which helps keep me fit mentally and physically, and it’s a whole family project.

There are times when I can’t get into the garden or cut or weed. My family steps in and helps when I am not well enough. The primary purpose is that I primarily give flowers away, including at my oncology infusion center. They welcomed me with open arms and let me put up a little station by the front desk. Each year, I put up a sign: “Growing Kindness flowers from patient Alicia.” I put out little bouquets, and patients or staff take them home. So, I can spread not just my passion, but joy, and this project has created ripples in my life and community.

We also give flowers at the grocery store, post office, and farmers’ market, and to our neighbors and friends. My four-year-old daughter will say, “I think we should give so-and-so flowers; they’re really sad.” That makes me so proud. If you don’t see joy, spread joy; be the joy. I truly believe these are ways to make an impact in your community; it can be as simple as giving someone a flower.

In winter, we put together seed packets from seeds saved from our garden and hand them out. If someone doesn’t have a green thumb, I tell them to throw the seeds on the side of the road. These seeds are noninvasive, okay for the climate. 

Make the world a place you want to live in, and spread beauty. That’s what I do with my days now.

How my life has changed after my diagnosis

Being diagnosed with cancer has changed my life in many ways. I have more patience and more appreciation for slowing down. I am lucky to live in a small, kind community where people care about each other. Everyone’s business is known, and people are always generous. Out in the world, I have more patience. I try to make conversation at the grocery store, hold the door, make time for small connections, making ripples and an impact.

If we don’t make the world a better place ourselves, no one will. If we all look at our phones and never connect, we become robotic, never making connections. 

To me, human connection and love are what the human experience is about. So I try to take time to jump into those experiences in real time and really spread joy when I can.

My body image and identity

I have always been extremely confident. Bile duct cancer has changed so much about my life: how I saw my future as a mother, wife, friend, daughter, and community member. It changed my appearance; I lost all my hair. It actually still falls out with every chemo infusion, so I am not completely bald, but I do lose hair. A little bit has grown back, but I don’t really have any eyebrows.

Especially in a society where looks are important, I lean into myself and my confidence. Beauty is in the eye of the beholder, and when you exude confidence and self-love, people gravitate to you and feel your energy. I truly believe in authenticity, being yourself, wearing your heart on your sleeve, and letting your soul shine. People love you for you and not just your appearance.

It is hard to walk around without hair or eyebrows, as a woman, wearing turbans and hats. People can tell you have cancer, and for me, the hardest part was not wanting to be seen as weak and sick. Recently, someone said to my mom at an event, “Is that your daughter? You would never guess she has cancer.” That’s the world I want to live in; cancer is a part of me, but not my whole identity. I am proud to be a cancer fighter, and I am still strong, just in many different ways.

The physical and emotional impact of chemotherapy

As of October this year, at my third anniversary, I have had over 80 chemotherapy infusions of three very strong chemotherapy drugs. I go every two weeks, and we have adjusted treatment, removed immunotherapy, and lowered dosage to help manage side effects. They are still very strong chemo agents.

On chemotherapy day, I am at my infusion from 8:00 AM to about 2:30–3:00 PM. My mom drops me off on her way to work, and my husband picks me up. We pick up my daughter from daycare, go home, and I go straight to bed. Symptoms start during the day, and I have a predictable flow: days one, two, and three are symptomatic.

We have strategies to manage this: anti-nausea medications, drinking tea, staying hydrated to flush out the drugs, and using every available tool. If I feel off, I’m knowledgeable enough now to know when to go to the hospital. I am confident in my body, treatment, and plan, which is a good place to be. The unknown is scary; not knowing what to expect, each chemo would be awful.

We know what symptoms are coming, and prepare for them. My nadir, periods of low immunity, usually come on days seven and eight. Steroids give a false sense of wellness, but after my nadir hits, there’s a low. I prepare by making sure the house is in order, laundry is done, meal plans are made, and arranging for my daughter’s daycare rides. I rely on my family. Sometimes, I’m not well enough for chemotherapy, and that’s a sign my body needs a break — I take a two-week break rather than just skipping a week. These breaks allow me to feel the best I’ve felt in months.

My symptoms include nausea, extreme lethargy, bone aches, and severe neuropathy in my hands, feet, arms, and legs. I have many tools for managing these. I still experience upper right quadrant pain by my liver, which is chalked up to internal neuropathy or permanent nerve damage from liver radiation. My greatest tool is my heating pad; I use it at all times, even in summer, when I sleep, and have portable ones for driving, thanks to my husband. It helps me manage these nerve pain symptoms.

How I’ve advocated for myself

Faced with a scary bile duct cancer diagnosis, I became a huge advocate for myself: asking tough questions, seeking information, and not settling for answers that didn’t sit well with me. I am a strong proponent of getting second, third, and fourth opinions; if insurance approves it, everyone should see a new specialist annually.

Everybody is different, so even if one treatment is standard, you need to question what’s happening. If you’re not involved in your care, you’re not doing yourself any justice. There are never too many opinions. I have met with four cholangiocarcinoma specialists in New England and New York, and all have agreed to keep me on standard care.

The more opinions I can gain, the better. At this point, I don’t question whether I’m on the right treatment or if I need more genetic testing. I have had many eyes on my case. I keep notes on potential treatments for the future.

Advocating for myself helped me receive Y-90 radioembolization, a strong dose of radiation beads delivered through the femoral artery, directly into the tumor. It helped kill the grapefruit-sized tumor on my liver, most of which is now necrotic, though some cells remain. By the grace of God, I have answered three years on one line of chemo, which is extremely rare.

Clinical trials and research: considering new treatments

With aggressive cancers, many patients progress quickly and have only clinical trials as an option. This is vitally important for the cancer community and for the future. There’s always hope that a clinical trial may be the “golden egg,” a cure, especially for palliative patients.

I have not removed clinical trials as an option. Every oncologist I’ve met asks, “Is now the time?” Every single one has said, “Given your stability, stay on your current treatment.” That makes it easier for me, and I’m lucky to be in this position; it’s not every patient’s outcome.

Each time I have a scan, my local oncology team consults with my team in Boston — Dr. Haley Ellis, a Harvard researcher and leading bile duct cancer expert. If it came to needing a clinical trial, I know she could send me anywhere for one. Keeping communication open as a patient keeps you at the forefront of your doctor’s mind. Being young and relatively healthy makes me a good candidate; if a drug arises that would help, I believe I’d be called.

Understanding palliative care

In cancer, you learn many definitions and acronyms: palliative care, terminal illness, hospice. Many people confuse these as interchangeable, but they have very different meanings. Palliative care typically means you are not curable; it’s hard to hear, but doctors must be honest.

Doctors told me, “You will not be cured, but we’ll manage your cancer.” I’m not in hospice or considered terminal today. I’m not actively dying. These are difficult terms, but palliative care only means it can’t be cured; it opens resources and therapies that help manage treatment. 

It’s medical coding, setting tone, but it does not mean you’re dying tomorrow.

How I keep going

One thing I often say, and many people do about challenges, “I don’t really have a choice.” Early in my diagnosis, a nurse told me, “You do have a choice. You can get up every day and fight to the best of your abilities or not.” There is a difference.

That realization really stayed with me. The fact that I show up every day through hard days is my way of moving forward. Everyone’s journey is different, and I recommend being gentle with yourself. 

Some days, I am the warrior. Other days, I am defeated, emotional, crying, feeling lost. It can change day to day, hour to hour, moment to moment. 

Allowing yourself grace and not always being at the top of your game is key to moving forward, physically and emotionally.

What I want others to know

If I could go back and say anything to myself before diagnosis, I would say to stop taking myself so seriously. Life is to be enjoyed. Your career is not everything. Just enjoy living in the moment and take things slowly.

What I want my daughter to take most from this experience as she grows is to live with intent and spread joy and kindness. The waves we make in our village and community by being kind are important. I don’t ever want her to forget that one small action can change the world. 

It’s not all doom and gloom with bile duct cancer or cancer as a whole; there are horrible days, but there are wonderful days. I hope she takes the feeling of joy from me and pushes it forward in the kindness she spreads throughout her life.


Alicia P. bile duct cancer
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Dania M.

Dania M., Colon Cancer, Stage 4, with Liver and Peritoneal Carcinomatosis



Symptoms: Constipation, diarrhea, severe bloating, swollen belly as if pregnant
Treatments: Surgery, immunotherapy

Brittany B., Liver and Bile Duct Cancer, Stage 4



Symptoms: Amenorrhea, unexplained weight loss, loss of appetite, pain in right upper quadrant of abdomen

Treatments: Surgery, immunotherapy

Categories
Lung Cancer Lung Resection Neuroendocrine Neuroendocrine Tumor Neuroendocrine Tumors Patient Stories Rare Surgery Treatments

Advocating for Answers: How Regina Navigated Her Lung Neuroendocrine Tumor Experience

Advocating for Answers: How Regina Navigated Her Lung Neuroendocrine Tumor Experience

Regina’s experience with a lung neuroendocrine tumor underscores how rare lung cancer, especially neuroendocrine types, can be missed in otherwise healthy, non-smoking adults, fueling stigma and misunderstanding around diagnosis and survivorship. Throughout her story, “lung neuroendocrine tumor” stands as a crucial phrase, bringing awareness to patients and their families who might not know these rare forms of lung cancer exist.​

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Regina shares the confusion and challenge of lung neuroendocrine tumor symptoms that were ignored or misdiagnosed; she experienced wheezing, coughing, and shortness of breath for months, which were dismissed as allergies or long COVID. Ultimately, thanks to her self-advocacy and pushing for thorough testing, advanced imaging revealed a tumor almost invisible to routine chest X-rays.​

Regina J. lung neuroendocrine tumor

Regina’s treatment path was unexpectedly direct: after rounds of imaging and procedures, she received a surgery appointment with little notice, bypassing chemotherapy and radiation due to the nature of her neuroendocrine lung tumor. Regina navigated the emotional impact of losing half her lung, adjusting to a new normal around summer activities, exercise, and self-identity as a survivor.​

This cancer experience led to deep introspection about Regina’s roles as a mother, creative professional, and partner. There were periods of guilt for surviving “more easily” than others, coupled with lingering anxiety about recurrence. Still, she transformed her circumstances into advocacy: offering hope, connecting with other rare cancer and lung cancer patients, and emphasizing the importance of self-advocacy and time spent with loved ones.​

Watch Regina’s video and read through her edited interview transcript below for insights, including:

  • Lung neuroendocrine tumor symptoms can masquerade as common complaints like persistent wheezing and chronic cough, but require advanced testing for diagnosis
  • Patients must often push past dismissals and advocate for more advanced diagnostic imaging, especially for rare cancers
  • Survivorship is complex; not enduring chemotherapy or radiation does not diminish a person’s experience or strength
  • Losing half a lung profoundly affects daily life, from seasonal activities to energy levels, requiring adaptation and acceptance
  • Only patients themselves truly know when something isn’t right; trust yourself and advocate strongly for your health.
  • Regina’s transformation: fear and guilt were slowly replaced by gratitude and a commitment to empowering others through storytelling

  • Name: Regina J.
  • Age at Diagnosis:
    • 41
  • Diagnosis:
    • Lung Neuroendocrine Tumor (lung NET)
  • Symptoms:
    • Wheezing
    • Back pain
    • Coughing, sometimes producing blood
  • Treatment:
    • Surgery: partial lung resection
Regina J. lung neuroendocrine tumor
Regina J. lung neuroendocrine tumor
Regina J. lung neuroendocrine tumor
Regina J. lung neuroendocrine tumor
Regina J. lung neuroendocrine tumor
Regina J. lung neuroendocrine tumor
Regina J. lung neuroendocrine tumor

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.



Hi, I’m Regina

I was 41 when I found out that I had a lung neuroendocrine tumor. 

I’m a really creative person. I work in digital marketing and specifically in social media. I love to create and design, and to bring stories to life. Before my diagnosis, I was a very active and vibrant person. 

I’m remarried and have been married for about two years now. I’m a stepmom, and I also have two children of my own.

Why I decided to vlog my cancer experience

When the diagnosis happened, it was given to me in several stages, each one being very vague until we got to the end. I started doing a lot of research online, which didn’t take me very far. So, I started looking on social media and found a few people going through something similar, but not many. There was a little bit of, “Wow, not that I wanted anybody to be sick, but I wish there was something else I could have learned from others.” Immediately after surgery, as soon as I could speak clearly enough, I thought, “I’m just going to start talking about this and see where it lands.”

Before diagnosis, I had no experience with surgery. The most invasive thing I’d ever done was having my wisdom teeth removed. I had no experience with hospitals, surgeries, or anything significant. I started talking about the anesthesia experience because it was wild. I thought, maybe this will reach someone who needs it. The information I found online was scary. I wanted to present it in a way that was more relatable, more human, rather than so medical and frightening.

My first symptoms, and when I realized that something was wrong

I think I knew something wasn’t right for a while, at least for a couple of years. It was so minor that it was easy to label it as something else. But then it reached a point where I couldn’t ignore it anymore. 

For at least a year before diagnosis, I’d had over ten chest X-rays—all normal. I had a bout with pneumonia at one point, but nothing explained what was happening.

Around the fall before my diagnosis, about six months or so prior, or even the whole year, I started wheezing constantly. It was on and off, here and there, and labeled as asthma or allergies, but I didn’t have a history of either. Also, being in my 40s, it was easy to say, “Our bodies change in our 40s.” The wheezing became constant and chronic. I lost the ability to speak clearly without coughing or wheezing.

If something’s not right, I’m the kind of person who goes to the doctor. I went to several doctors and primary care visits, asking what was going on and why I was wheezing. In a post-COVID world, a lot of things were labeled as long COVID, acid reflux, and all kinds of things. It eventually reached a point where it was so persistent that it couldn’t be ignored anymore. 

I pushed for advanced testing and imaging. I got to a point where I said, “I can’t live like this anymore. We have to figure out what’s going on.”

My symptoms were dismissed until a tumor was found

There was a lot of, “Our bodies go through a lot of changes in middle age,” and “You can suddenly develop allergies, get adult-onset asthma, or be more susceptible to respiratory problems after COVID.” There was always a small Band-Aid put on it until symptoms got so big they became scary. 

Eventually, I started coughing up a little bit of blood, and I had pain in my back and when breathing. There was an ER trip, and my lungs started collapsing in sections. A chest X-ray only slightly visualized the tumor, and doctors said it was “suspicious for cancer,” but advanced imaging showed the tumor. It wouldn’t have been diagnosed with just a chest X-ray. 

It took that CT scan to fully visualize the tumor. That’s what makes some neuroendocrine tumors unique. They can grow in airways that aren’t easy to see. I had both an airway tumor and a lung tumor.

I got a direct call from my doctor, which was alarming. Your doctor doesn’t just call you on the phone. My doctor asked me to come in to talk about lung cancer, which was hard to wrap my mind around. It was like stages of grief. 

After rounds of imaging, biopsies, and procedures, the diagnosis was confirmed as neuroendocrine cancer.

My reaction to my multi-layered diagnosis

There were layers. ”You’re too young for this, you don’t have a smoking history.” There’s a stigma that lung cancer is just a smoker’s disease, not something for a healthy 41-year-old. 

Each appointment uncovered a new layer, until the final one confirmed it was a neuroendocrine cancer. There were days we wondered how long I would live and what treatments I would need, from worst-case scenarios on down.

I had never heard of neuroendocrine cancer before. Never in my life. I truly thought, “I don’t ever have to worry about getting lung cancer, since I haven’t done anything to be exposed to it.”

Treatment decision-making and conversations with my care team

Initially, since we didn’t know what kind of lung cancer it was, I prepared myself for radiation and chemotherapy. I’m self-employed and had to tell clients, rearrange projects, and get help. There wasn’t any PTO I could lean on. I thought, “I’m going to have radiation and chemotherapy for I don’t know how long.” 

As we learned more about neuroendocrine tumors, we found that not all require radiation or chemotherapy. The type I had didn’t need those treatments. 

The process felt chaotic; appointments were happening back-to-back. There was so much exploration that we didn’t talk about treatment until the very end, then it was, “You need surgery.” 

After multiple procedures, we got a call to schedule surgery with one day’s notice. We hadn’t prepared the house or anything, and didn’t know what we were getting into until it was done.

The day of my surgery

It was humbling. I had no experience with surgery, so everything was new. My husband had to wash me with antibacterial soap before surgery, several times. 

He was very supportive. I had to drink energy drinks and high-protein shakes to prep. We tried to make it fun, encouraging each other with drinks. But it was scary. 

Arriving at the hospital, not knowing if you’d come home, was humbling; it put all of life into perspective. What am I doing with my life? All the little things I got upset about now seemed silly. 

My experience has given me a much more carefree perspective. I’m not going to sweat the small stuff anymore.

How my perspective and life have changed after I lost half a lung

Sometimes I’m really positive about it, and sometimes I’m negative, which surprises me, because I’m usually optimistic. When you survive something life-threatening, you get a new lease on life. I had surgery, I’m cancer-free, and I’m under surveillance for years. But even though I’m cancer-free, there’s doubt—are they sure? How do they know it’s really gone? There’s a lingering rain cloud of fear that the cancer could come back. 

I was afraid I wouldn’t live to see my 42nd birthday, but now I’m almost 43. I never thought I’d know what it’s like to be a grandma, but now I might. It’s a double-edged feeling, celebration and fear.

Summertime used to be my favorite time of year. It’s when the world feels alive and happy. But I live in the Midwest, and it’s humid. Life with half my lung means that humidity and I just don’t get along anymore. I feel like I can’t breathe during the summer months. I’m indoors a lot now during those times of year when I would have been at the beach, the lake, or the pool. Now, I wait for the day to cool off. It’s just uncomfortable.

There were a lot of things. I really enjoyed riding my bike, and we were getting into camping. Bike rides were huge in our lives, and we did some outdoor fitness at times. I’m an adult who doesn’t know how to swim, so I was just learning, but that’s pretty much over. Floating with half a lung doesn’t really work. I don’t exactly understand why, but that’s the reality. 

It sounds silly, but there were things I look back on and realize I took for granted. It’s a harder, more difficult journey now. Riding my bike is also harder. There were so many things I did easily before, and I didn’t realize how easy they were until they weren’t anymore.

How I feel about further treatment, survival, and being a wife and mom

I feel grateful that I’m alive and cancer-free, but there’s still that little fear bubble. I also feel guilty. I didn’t have to go through chemotherapy or radiation, and I wonder if I suffered enough to call myself a survivor. There’s guilt, too, because I feel fortunate. My cancer makes up only 1% to 2% of lung cancers. 

“Why me?” You never think you’ll be the one, but then it happens to you. You can scroll all day and see those 1% stories, but being in that 1% is surreal. So yes, I’m lucky and fortunate, but also scared all the time that the journey isn’t over.

My experience has made me respect time more. All holidays are important now. There was a time I didn’t care if we skipped Christmas, but now Christmas, Thanksgiving, birthdays, whatever… they all matter. You don’t know if you’re getting another one, so I want to make every moment count. There’s pressure with that, but it’s made me a better mom because I’m more patient. 

I don’t take time for granted anymore, and I don’t rush through life. Seeing the finish line makes you slow down. I want people to treat me normally, but also not baby me. 

For example, if we’re at a cookout and the air is smoky, I run away, not to breathe anything in. There’s a fine line where I want people to respect their lungs, but also be normal.

My husband and I joke about having a “fast-track marriage.” We were only married a month or so before I started having significant symptoms; six months at diagnosis. Our marriage was supposed to be in a honeymoon phase, but instead we were thinking, “I hope you’re not a widower.” As morbid as it sounds, that’s reality. It brought us closer; we became strong together, weak together, humble together, but ultimately stronger. We often reminisce. ”Remember when this happened? Here we are, sitting on the other side.” I feel like we’ve been married 30 years, though it’s only been two.

And as for survivorship, it means many things. It means talking about my experience on social media, even if I reach just a few people. At least ten people have told me their story is almost identical to mine. Many people have had surgeries like mine for different forms of lung cancer. Talking about it creates awareness, which is important, and having someone to relate to matters. Survivorship means not taking my time for granted, making sure I enjoy my life. I had fallen into a rut of just working, going home, and watching TV. Now, I want to push myself. I have limitations, but I try to make the best of them, facing challenges rather than defeat. Sometimes I miss having both lungs, but I remind myself I can still try new things, just with different challenges.

What people don’t understand about a lung neuroendocrine tumor diagnosis

People don’t understand that lung cancer isn’t just for smokers or those exposed to toxins. There’s a phrase in the lung cancer community: “You just need lungs to get lung cancer.” There’s stigma; people ask, “Are you a smoker? Do you vape?” I say no, but even if you protect your lungs, you can still get lung cancer. Rare cancers like mine have no explanation for why they happen. 

If you’re coughing or wheezing for an unknown reason, sometimes you need more than a chest X-ray; maybe you need a CT scan. Sometimes you just need to ask for it. I wish I’d asked sooner, but I didn’t. Even if I had, I don’t think it would have changed anything. 

The message is: “You just need lungs. That’s it. They’re important. Take care of them.”

How doctors and medical teams can better support patients

I think medical professionals could do a better job than following such a rigid yes/no system. Electronic medical records are wonderful, but we’re unique humans. Our bodies are all different, so providers should ask deeper questions. 

In the NET community, there’s a phrase: “Doctors are trained to think of a horse when they hear hoof beats, but sometimes it’s a zebra.” Zebras symbolize the neuroendocrine community. You may present with asthma, allergies, GERD, long Covid, but sometimes it’s a zebra. Providers need to take that extra step.

My message of hope to others with neuroendocrine tumors

People who reach out to me often say there’s not much information, and that what exists is confusing or scary. Some use outdated or new terms they don’t understand. People are reaching out globally, and they’re scared, worried about recovery, and pain. 

I tell them: “It’s super scary now, but hold on.” I connect them with resources, like Facebook groups for NET communities. Some now interact with me on social media; I see them have birthdays, celebrations. 

It’s really nice to know you’re not alone. It’s not just a story they found; I’ve gotten direct messages, and it’s comforting to know someone has gone through this.

My advice for anyone hearing my story

I’m passionate about this: as a woman, sometimes being sick is dismissed as anxiety or stress. That’s something I heard a lot pre-diagnosis. Healthcare providers told me, “This is anxiety. You need to reduce your stress.” There was shame with that. You know when something’s not right with your body, and it’s normal to be anxious about it. Who wakes up excited to be wheezing? Of course, you’re anxious if something’s wrong. Don’t let nervousness or others labeling you as anxious take you off the path of knowing what’s right and wrong in your own body. 

Advocate for yourself. If something is going on with your lungs or any other part of your body you haven’t dealt with before, it’s okay to be scared, but don’t let anxiety be your diagnosis. If the doctor tells you you’re anxious, keep pushing for answers.


Regina J. lung neuroendocrine tumor
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Burt R. feature photo

Burt R., Pancreatic Neuroendocrine Tumor (pNET) & Kidney Cancer



Symptom: None; found the cancers during CAT scans for internal bleeding due to ulcers
Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled)
...
Jennifer P. feature

Jennifer P., Neuroendocrine Tumor, Stage 4, High-Grade



Symptom: Pain in upper back
Treatments: Chemotherapy, immunotherapy
...

Categories
BTK inhibitor Chronic Lymphocytic Leukemia (CLL) Leukemia Patient Stories Targeted Therapy Treatments

Diagnosed with CLL, Lynn’s Experience as An Oncology Nurse Lead to Patient Advocacy in Congress

Diagnosed with CLL, Lynn’s Experience as An Oncology Nurse Lead to Patient Advocacy in Congress

The phrase “chronic lymphocytic leukemia” or CLL can conjure images of fear and uncertainty, but Lynn’s CLL experience is rooted in perspective as a retired oncology nurse navigator. Originally from Brooklyn and now living in rural Central New York state, Lynn discovered that she had CLL by accident in 2012. Coworkers in the infusion room all had low white blood cell counts and so she was asked to get her bloodwork for comparison. That simple draw revealed elevated white blood cells, and her oncologist later told her she had likely lived with undetected CLL for more than a decade.

Interviewed by: Keshia Rice
Edited by: Chris Sanchez

As someone who spent years caring for people with life-threatening cancers, Lynn understood that CLL, one of the most common types of leukemia in adults, is a chronic illness without a cure but with many effective therapies. She felt grateful rather than devastated by the diagnosis. Her initial IV chemotherapy session landed her in the hospital, but a shift in treatment standards for older adults opened the door to targeted therapy through a BTK inhibitor, which she has taken continuously since 2018. Along the way, lung cancer discovered during hospitalization led to surgery and a year-long delay, reinforcing for her how complex modern cancer care can be.

Lynn S. chronic lymphocytic leukemia

Lynn’s experience is also deeply shaped by support and community. Her significant other, Bob, drives her to appointments now that she no longer drives, and close friends in pharmacy and nursing understand both the science and the emotions behind a cancer diagnosis. She stays engaged in her small town, enjoying cooking, puzzles, photographing flowers, and free outdoor concerts at the park. These everyday joys keep her grounded and remind her that life is bigger than labs and scans.

Perhaps most importantly, Lynn has transformed her CLL experience into advocacy. She testified in front of Congress about the high cost of her BTK inhibitor, and now educates others about Medicare, drug coverage, grants, and the importance of getting information from reliable sources. For Lynn, teaching and supporting others with CLL is “the ultimate anti-anxiety medication,” and she hopes people take away strength, maturity, and a commitment to living life fully, no matter what their health looks like today.

Watch Lynn’s video and read her story below to learn more about how:

  • A CLL diagnosis can arrive unexpectedly and long after the disease first appears in bloodwork, but effective treatments can help people live well for years with it
  • Treatment plans can evolve, moving from traditional chemotherapy to targeted therapies like BTK inhibitors when side effects or age make older regimens less appropriate
  • A strong support system, composed of partners, friends, and healthcare colleagues, can make medical appointments, treatment decisions, and day-to-day life with CLL more manageable and less isolating
  • Becoming an informed, empowered patient through asking questions, learning about medications, and understanding insurance can reduce anxiety and improve care
  • Lynn’s transformation from oncology nurse navigator to CLL patient advocate shows how lived experience with disease can fuel meaningful advocacy around drug costs, Medicare, and access to care for others

  • Name: Lynn S.
  • Age at Diagnosis:
    • 62
  • Diagnosis:
    • Chronic lymphocytic leukemia (CLL)
  • Symptom:
    • Elevated white blood cell count
  • Treatments:
    • Chemotherapy
    • Targeted therapy: BTK inhibitor
Lynn S. chronic lymphocytic leukemia

AbbVie

Thank you to AbbVie for supporting our 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 treatment decisions.



“Every day, you have to live life to its fullest, no matter what your health issues are.”

Lynn S. – CLL patient

About Me

My name is Lynn. I am originally from Brooklyn, New York, and I moved upstate to Central New York in the year 2000. 

I am a retired R.N. with experience in the operating room and oncology. I was the very first oncology nurse navigator in my cancer center. And I love to photograph flowers.

I have a daughter who works in healthcare as well, with a school for at-risk children. She has diabetes and is in control of her own health. She’s on an insulin pump and has a continuous glucose monitor. She’s upfront with me about health issues, and we discuss them all the time.

My significant other, Bob, has his own son, who lives in Vermont, and his granddaughter just turned 13. I have a grandson who just turned 34 and who does not have diabetes. He’s very healthy and lives independently.

Do we get to spend as much time with them as we like? No. Driving is a big issue for us now that we’re older. But we do speak with them a lot. It’s good to stay in touch and yet maintain a level of independence. We don’t hover over our kids.

Lynn S. chronic lymphocytic leukemia
Lynn S. chronic lymphocytic leukemia

How I Found Out I Had CLL

Back in 2012, the nurses in our treatment room, in our oncology infusion room, had low white blood cell counts. We don’t know why. So they asked me to go have my blood drawn, which my primary care doctor agreed to do, just as a comparison. My white blood cell count and everything else was very high. 

So I made an appointment to see my oncologist, and he said, “Lynn, you’ve likely had CLL for more than ten years, and nobody picked up on it.” That is how I was diagnosed.

When I look back, I realize that I never really paid attention to my white blood cell count. Although as a teenager, I had several instances where I had very high, elevated white blood counts. My primary care doctor at one point thought I had gallbladder issues, and he sent me for all these scans, and whatever happened, it resolved. 

At one point, I had an abscess in my tooth that had an off-the-charts white blood cell count, and my primary care physician had to give me a million units of penicillin via intramuscular injection. 

So I never paid much attention. The doctor said it was fine; I never looked. I never looked at my platelets, my red blood cell counts, my hemoglobin, hematocrit, anything. Now I look all the time.

I have not had the sequencing and testing that some people have had.

How I Reacted to My CLL Diagnosis

Well, having been a nurse for many years, I realized that it was a chronic illness and that there was no cure. I was not upset at all. 

It was much better for me than being diagnosed with acute leukemia as an adult. Many who are diagnosed often succumb to the disease. People with other solid tumor cancers also ended up succumbing to their disease. So I was grateful at that point, when I knew that I would likely have to take medication for the rest of my life. 

I said, “Well, I’m on Synthroid. I have coronary artery disease. I take blood pressure medication. So why not? It doesn’t matter.”

My CLL Diagnosis and Treatment Timeline

I started with watch and wait, and ultimately progressed to the point where my lymph nodes were all getting large and I needed treatment.

My treatment was a little complex. I started treatment, I believe, in 2015 or late in 2016, when I had one round of IV chemo, which put me in the hospital.

Luckily, the oncologist said at the last American Society of Hematology (ASH) conference that they were no longer treating people over 65 with traditional cytotoxic chemotherapy. Another drug had just been approved, and he put me on that. But that was also interrupted because when I was in the hospital, they found a very small lung cancer, and I had to stop for surgery. So I had almost a year’s delay. 

I have been on continuous therapy since 2018 with that new drug, and I’ve never been off it.

My Support System: Family, Friends, and Finances

I have a significant other, Bob, who’s extremely supportive. Because I can no longer drive, he takes me to all my many appointments. 

I just saw my oncologist as well, so he has been very supportive. 

My very best friends, one was the oncology pharmacist and my other is also an R.N., are both very, very supportive. 

Thankfully, I do not need financial support. There are grants available for the medication.

I Advocate for Drug Cost and Insurance Coverage

I had the opportunity to speak before Congress at one point to Speaker Nancy Pelosi. I testified that my BTK inhibitor at that time was about maybe $12,000 a year. It’s now $17,000 a year. And who could afford it? Nobody, not even a retired R.N. 

Medicare, fortunately, had the provision in it to hit an out-of-pocket max this past year of $2,000. This upcoming year, it’s $2,100. Being a nurse navigator, I was fortunate enough to navigate myself into a grant with the Patient Access Network Foundation. A lot of people go through the Leukemia and Lymphoma Society, which has now changed its name to Blood Cancer United. They are also very generous with grants. 

Because I’ve been on a grant for these years, it’s almost automatically renewed, so I don’t have to worry about that yet.

Lynn S. chronic lymphocytic leukemia

I realized that it was a chronic illness and that there was no cure. I was not upset at all

Lynn S. – CLL patient
Lynn S. chronic lymphocytic leukemia

How I Live With CLL

Every day, you have to live life to its fullest, no matter what your health issues are.

I continue to enjoy cooking, watching game shows on TV, going out in nature, and taking car rides. We live in a very rural area. Thankfully, it is now the 200th anniversary of the Erie Canal, which we are a good part of, and I take pride in that. In a smaller community, other than Brooklyn, New York, which has millions of people, there’s a big connection to the community here. We have a series of arts in the park every Monday night starting in May. We have musicians who come to the local public park, and they do performances. We have food trucks, and we get to meet all these people. We have become very friendly with some of the band members. There’s a mobile fruit and vegetable truck that comes around. There are daily events all over the place. Now, for leaf peeping on Columbus Day weekend, which has just passed, there’s going to be a trunk or treat at a neighboring farm. So, it’s dairy country. It’s beautiful.

Genetically, we are predisposed to neither blood cancers nor very many solid tumor cancers. But I truly believe that God doesn’t give us anything that we cannot handle. 

I like to educate people about leukemia and bone marrow cancers, and that basically, the only so-called cure would be a stem cell transplant. Those have additional problems and complications, and at 75 years old, I’m not willing to go through any of those. So I’m staying where I am. 

My oncologist has told me I’m going to stay on my current drug until it no longer works, and then there are other options. There are so many options. 

When it first came out, my oncologist told me it needed to be in a doublet, a combination of two BTK inhibitors. Now there are so many choices. There are triplets, doublets. There are infusions with BTK inhibitors, and there’s another one as well. So there are a lot more different programs in the air right now that I could ultimately get if I needed to.

My Thoughts on Clinical Trials and Who They Are Best For

My doctor was head of the research department at our hospital, so I would be open to joining a clinical trial. But because I’m stable, I’m not willing to give it a chance. I have so many comorbidities: coronary artery disease, for one. That’s a big issue. So I’m just going to stay with the program. 

But I do support clinical research. I do support people getting involved in trials. I think those are for people with much fewer comorbidities or other medical issues, and those who are younger. 

Actually, CLL used to be a disease of the elderly. If you live long enough, you’re going to get it. But now it’s a disease that is being diagnosed in the 30s, 40s, and 50s. So it’s different. I don’t know if it’s because of our environment or spontaneous mutations. It’s very complicated.

My CLL Story Continues Below

Program Highlight: Building a CLL Game Plan: Strategies for Treatment, Trials, and Team Building

Lynn S. chronic lymphocytic leukemia

Chronic lymphocytic leukemia (CLL) care is getting more personalized than ever.

CLL patient advocate Jeff Folloder and expert hematologist-oncologist Dr. Nicole Lamanna (Columbia University Irving Medical Center) explain how today’s innovative targeted therapies, time-limited treatment options, and emerging clinical trials can help patients craft a care strategy that truly fits their needs. The conversation dives into how to assemble a strong, collaborative medical team, at both local hospitals and major centers, so patients and families feel empowered at every step.

Program Topics
  • Set Your Treatment Strategy: Understand targeted therapies (BTK and BCL-2 inhibitors), their benefits, and when time-limited options fit your journey
  • Explore Clinical Trials: Discover how and where clinical trials fit in the CLL landscape, plus how to find the right match — whether at a major center or community clinic
  • Build an Empowered Team: Learn how to connect with local doctors and specialists from top centers for a coordinated plan, and what roles nurses, advocates, and social workers play
  • Get Organized: Practical tips for tracking labs, sharing results, and communicating with your care team
  • Prioritize Quality of Life: Find resources to manage daily challenges like fatigue, infection risk, and stress, while keeping your goals central to treatment talks
  • Join Your CLL Community: How support groups and partnerships can boost health literacy, advocacy, and your decision-making power

Dr. Nicole Lamanna: “I love taking care of this disease and patients with this disease, and trying to figure out therapies that will improve your life and the quality of your life.

“Now we have really good options for patients. Some patients, if they want, can take a chronic continuous therapy. And we’ll talk about that. Or some people could take a time-limited therapy.

“And this really does become a discussion between the provider, your provider and you. Because the good news is these are really great treatment options, both of them.”

Dr. Lamanna recommends that CLL patients find specialists.

Dr. Lamanna: “I think it’s always good to touch base with the CLL specialist and have them part of your team because they can be helpful. They can… bring up treatment ideas that maybe the local physician hasn’t thought of or can partner with the local physician.

“This is a rare disease. I am not knocking the community docs. They work really hard, but they might see a variety of different diseases, and… they may not know the most up-to-date information about CLL per se if they’re treating many, many diseases.”

She wants patients to be open-minded about clinical trials.

Dr. Lamanna: “I think that there’s a big misconception out there about clinical trials… we can only move the field forward through clinical trials.”

Dr. Lamanna wants all patients to feel empowered and prepared.

Dr. Lamanna: “It’s always important to write a list down because you don’t always remember when you go to the office. And then… maybe you’re a little scared. You just had your blood drawn. You forget things… you’re anxious, totally normal during a visit.”

For the rest of this interview, watch our program replay ON DEMAND.

Learn what’s changing, how it impacts treatment decisions, and what it all means for patients today.

Back to My CLL Story

I’m Seeing Cancer in Younger People

I’m seeing more young people with colon, breast, and pancreatic cancer. I have friends who have been nurses and worked at cancer centers and have ultimately gotten some type of cancer. Thankfully, we know what to do. We don’t freak out about it as much as some individuals. 

I belong to a CLL support group on Facebook, and some people who are diagnosed in their 30s are often very freaked out to think that they could be on medication for the rest of their lives. I compare this with insulin-dependent type 1 diabetes. My daughter has type 1 diabetes. She’s had it since she was 12. She’s 55, thank God, and she is very well controlled. She can’t live without that medication, just as I can’t live without mine. It’s better to take medication for the rest of your life than to succumb to something that is perfectly treatable in this day and age. 

Doctors are promising other combinations for five or even more years of remission from CLL, but that wouldn’t be good enough for me. Remission for life is the ultimate goal.

The Side Effects of BTK Inhibitor Therapy That I Experienced

I’ve had the usual bruising and bleeding that comes with BTK inhibitors. When I was initially taught, I was told, “Don’t use a razor. Be careful in the kitchen with knives.” I’m old, and the skin on my hands is very thin, so I easily cut myself. I have Band-Aids all over. My hands are very bruised.

I’m grateful now for the winter because I can wear long sleeves. People don’t say, “Are you on a blood thinner?” and I go, “Yes, I am.” It’s quite consistent with being on a blood thinner, like when I was taking Plavix after a cardiac event. So, I bruise very easily. I bump into things. I wake up, and I have black and blue marks, but my platelets are good. I always check them.

My Family History, Other Conditions, and Vaccinations

I have a small family, and I made sure I told my cousins about my situation. My sister has a different hematologic disorder. It’s TTP, thrombotic thrombocytopenic purpura. She had zero platelets, so that was very, very serious. I’m grateful I don’t have that. 

Diabetes and cardiac issues do run in our family. So we’re very upfront with each other as to health and maintaining our health, trying to eat a healthy lifestyle. 

No diet can reduce my risk of CLL or make it go away. Some people in our support group say, “Oh, I can’t eat blue cheese,” and I say, “Well, blue cheese is made with bacteria, so maybe there’s a reason. I don’t know. I’m sure you could eat a little bit of blue cheese.” 

Some people are worried about yogurt with lactobacillus. I know that we cannot get any live vaccines like measles. Of course, I’m immune; I had it as a child. 

I’m very proactive, and I am pro-vaccination. I know that we’re under-responsive in terms of vaccinations. Because we’re immunocompromised, we don’t get 100% coverage. I’ve had Covid three times. I just got my COVID-19 booster. I got RSV. I’ve had shingles. I’ve just had the flu, so I get them all.

Lynn S. chronic lymphocytic leukemia

It’s better to take medication for the rest of your life than to succumb to something that is perfectly treatable in this day and age.

Lynn S. – CLL patient
Lynn S. chronic lymphocytic leukemia

Staying Mentally Grounded and Finding Peace

I take anxiety medication. Does it help me? I guess it does. 

I like to do puzzles, word puzzles, New York Times puzzles, and mini crosswords. I like to appreciate the beauty and the uniqueness that surrounds us. 

I’ve said that I love taking pictures of flowers. I call the center of the flower the heart, the heart of the matter, and in its uniqueness, it often has patterns, like the sunflower: it’s concentric, like the bearded iris that has its tongue sticking out. I love hummingbirds as well. I enjoy them, even from May through September. I feed them. I have such wonderment about God’s tiniest creation, a bird that can hover as well as sit still. 

I appreciate the beauty of life and the fact that I am alive.

How Advocacy and Educating Others Help Me Cope

They help me a lot. Most recently, I gave a public service announcement, a PSA, on my CLL Facebook group about Medicare open enrollment, which is now open from October 15th through December 7th. I am a healthcare expert, so I advise people and try to teach them about the A, B, C’s of Medicare. It’s actually A, B, C, D, E, F, so it’s quite complex, but I try to simplify it for people. You have to look, especially when you’re going for insurance, especially at 65, where you may or may not be able to change your original decision depending on where you live, your family, and your lifestyle. 

Are you a smoker? Are you a drinker? Are you morbidly obese? I’m overweight; I know that. I still try every day to get out and do some walking, but I think teaching and educating people is the ultimate anti-anxiety medication for me.

What I Hope Others Take from My Story

I hope other people can get strength and encouragement from my story.

I could walk across the parking lot and get run over by a delivery truck. So every day, you have to live life to its fullest, no matter what your health issues are. You have to take the best care of your health to the best of your ability and with what we know in medical science. 

I hope that other people are upbeat and can gain some level of maturity, knowing about their illness and what to expect down the line.

Once you have support from even one person, they can make all the difference in the world. Kindness goes very far.

Lynn S. – CLL patient

Why It’s Important to Be Informed and Empowered as a Patient

I think with education and information, you can make a difference in the world. You can make a difference to others. You can certainly make a difference to yourself.

I truly believe that there’s a reason why we cross paths with the people that we meet in life. What that reason is, I don’t know. But, for example, you might need help getting insurance one day, and you might say, “Hey, I remember Lynn. She has a lot of experience with insurance.” 

As long as you’re an educated consumer, I think you have the best chance of surviving in today’s world with so much foolishness and mismanagement of health sciences and medicine. I think it’s very important to be well-informed about vaccinations, about medications, about contraception, about other issues, like political issues, which I won’t get into. It’s a tough world that we are all living in now. 

Once you have support from even one person, they can make all the difference in the world. Kindness goes very far.

Resources I Trust and My Final Thoughts

Go to the best sources available. When I’m doing a search online, I’m always looking for information from Cleveland Clinic or Mayo Clinic. For CLL, CLL Society has the most up-to-date information, as well as the National Comprehensive Cancer Network (NCCN) guidelines for patients. They have the latest and the best up-to-date information, what’s new and what’s fascinating. We like to share all that information in our group. 

I am grateful to be helpful to the group. Some people don’t like me being so forward, I guess. I’m from Brooklyn. You can leave Brooklyn, but you can’t take Brooklyn out of me. New York City is a tough place to grow up in, and I am street smart, and I’m quite smart as well.

Lynn S. chronic lymphocytic leukemia
Lynn S. chronic lymphocytic leukemia

AbbVie

Special thanks again to AbbVie for its support of our independent patient education content. The Patient Story retains full editorial control.


Lynn S. chronic lymphocytic leukemia
Thank you for sharing your story, Lynn!

Inspired by Lynn's story?

Share your story, too!


More Chronic Lymphocytic Leukemia (CLL) Stories


Jeff F., Chronic Lymphocytic Leukemia



Symptoms: Fatigue, night sweats



Treatment: Clinical trial (ofatumumab)

Leesa T., Chronic Lymphocytic Leukemia



Symptom: Bruising



Treatments: Imbruvica (ibrutinib), Brukinsa (zanubrutinib)
Michele Nadeem-Baker

Michele N., Chronic Lymphocytic Leukemia



Symptoms: Slow healing, scalp infection, enlarged lymph nodes



Treatments: Clinical trial of ibrutinib, fludarabine, chlorambucil and rituximab; acalabrutinib
Tamsin W. feature

Tamsin W., Chronic Lymphocytic Leukemia with 11q Deletion



Symptoms: Out of breath, dizzy, nauseated, tiredness, palpitations
Treatments: Obinutuzumab & venetoclax

 

 
 

Categories
Chemotherapy Lung Resection Metastatic Orchiectomy Patient Stories Retroperitoneal Lymph Node Dissection (RPLND) Stem cell transplant Surgery Testicular Cancer Treatments

Andrew Ryan Finds New Meaning After Stage 4 Testicular Cancer

Andrew Ryan Finds New Meaning After Stage 4 Testicular Cancer

Andrew Ryan is a 41-year-old digital marketing expert who splits his time between meaningful work, family, and faith. Originally from New Jersey and now living in Tennessee, he is the proud uncle who shows up for nieces, nephews, and cousins’ weddings, and the kind of person who loves to stay active, read, play poker, and keep moving forward. In December 2022, that forward motion was interrupted when persistent leg pain and severe discomfort sent him to the ER, where he was diagnosed with stage 4 testicular cancer. He says, “That was not what I was expecting, and it changed everything.”

What followed was a fight for his life that tested everything he believed about himself, his health, and his future. Today, Andrew is cancer free, 22 months and counting, and has poured his experience into a book and speaking engagements so he can share what he has lived through with others facing cancer.

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

His immediate instinct was to fight. Andrew Ryan found himself focused on survival, not probabilities. He returned to New Jersey to seek the best cancer care. Surgery quickly removed the affected testicle, and four rounds of chemotherapy followed. Side effects were severe and wearying, and when a post-chemo scan showed testicular cancer regrowth, his team escalated to high-dose chemotherapy and a stem cell transplant in Manhattan. 

Andrew P. stage 4 testicular cancer

Multiple surgeries, including a major abdominal operation and partial lung resection, tested Andrew Ryan’s resolve. Long hospital stays, physical debilitation, and witnessing the pain of other patients left deep marks.

Andrew Ryan credits his family and faith with sustaining him through this stage 4 testicular cancer experience. The nervous energy and existential fears from earlier traumas reappeared, but faith provided grounding and hope. Celebrating scan results, ringing the bell, and returning to life’s milestones felt triumphant but bittersweet; reminders of his survival and those lost. 

As a survivor, post-cancer life means asking, “How do I make this worth it?” For Andrew Ryan, that means sharing his story, supporting others, and living with authenticity. He urges fellow patients to treat it as a challenge and fight to overcome it, to not lose their authenticity, and to know that no matter what happens, life goes on.

Watch Andrew Ryan’s video above, and read through his edited interview transcript below. You’ll gain insight into key aspects of his story, including:

  • The need to be proactive with any unexplained or persistent pain. Early detection matters, even in young and otherwise healthy people
  • How cancer’s impact lingers emotionally and physically, even for those declared cancer-free
  • Facing the possibility of mortality can deepen meaning, motivation, and connection to others
  • How support from family and spirituality can be vital during cancer treatment and recovery
  • Andrew Ryan’s transformation: From disbelief and anger, through pain and despair, to advocacy, resilience, and helping others

  • Name: Andrew Ryan P.
  • Diagnosis:
    • Testicular Cancer
  • Staging:
    • Stage 4 (Metastatic)
  • Age at Diagnosis:
    • 39
  • Symptom:
    • Severe leg pain
  • Treatments:
    • Surgeries: retroperineal lymph node dissection (RPLND), orchiectomy, lung resection
    • Chemotherapy
    • Stem cell transplant
Andrew P. stage 4 testicular cancer
Andrew P. stage 4 testicular cancer
Andrew P. stage 4 testicular cancer
Andrew P. stage 4 testicular cancer
Andrew P. stage 4 testicular cancer
Andrew P. stage 4 testicular cancer

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.



My name is Andrew Ryan

I’m 41. I live in Tennessee, and I’m originally from New Jersey. Happy to be here today. The reason I’m here is that I was diagnosed in December 2022 with stage 4 testicular cancer. It became a pretty tough struggle for my life, but I stand before you cancer-free, 22 months and counting. I am very blessed, very lucky, and happy to be here to talk to you today.

My family is definitely at the top of the list of my passions. I have sisters here in Tennessee, and they used to live in New Jersey. They moved here years ago, and I’m here for them because I have one sister who keeps having nieces and nephews, which is a lot of fun for me as the uncle. All my cousins back home in New Jersey keep getting married. They’re all at that age, and I’m heading back in December for yet another wedding. So family is really important. 

I’m a digital marketing expert, and I actually really love that work;  it’s something I do as a career and on the side. I like to play poker, I like to read, and my faith has become something very important to me. I focus on that. I like to stay healthy, work out, and just try to stay busy at this point and keep moving forward. I wrote a book about my story and have really found a lot of value in speaking, doing interviews, and sharing my experiences.

My first symptoms: the early warning signs I missed

I missed the first symptoms. Back in 2018, I had some inflammation in that area over the course of maybe a week, then it went down. Being a hardheaded guy who never really got sick, I waved it off and didn’t get checked out. That was the first symptom, which was four years before I was diagnosed. It had a lot of time to metastasize. 

In late summer or early fall of 2022, I thought I had a bad leg day at the gym. I started to get pain in my thighs. Having had a bad car accident at 18, when my pelvis was shattered, I thought the pain was from that. I began seeing an orthopedist; they couldn’t figure out what was wrong with me. I was sent to physical therapy, but the pain in my legs kept getting worse. I have a high pain tolerance, but after a while, I started losing sleep to the point where I literally couldn’t sleep. Then one night, my legs were absolutely on fire.

I was spending every day hooked up to a TENS unit with an electronic blanket warming my legs. My legs were on fire. At 2:15 AM, I drove myself to the ER. I remember arriving at the parking lot, and I looked at the front desk and thought, “I don’t know how I’m going to make it to that front desk.” I was in so much pain. 

I managed to get there, sweating, huffing, and puffing. I said, “I don’t know what’s wrong with me. I’m in incredible pain; I can’t stand. Please help me.” They took some scans. When the nurse came in, and she didn’t come alone, she brought a random gentleman with her; I knew the news was going to be really bad. She said, “I’m sorry, Andrew. I have really, really bad news.” I was thinking maybe a pinched nerve, something from my accident. She said, “You have an advanced and aggressive stage four testicular cancer.” 

That was not what I was expecting, and it changed everything.

My immediate emotional response and entering ‘fight mode’

I wasn’t even afraid. I went right into fight or flight, and for me, that’s fight. I went into fight mode. 

It wasn’t until a year later, after my first few rounds of chemo, when I got a call in the middle of the summer saying, “We’re sorry, your cancer has come back,” that fear hit me. Until that point, it hadn’t really sunk in. 

When I had to tell family members that I had cancer the first time, it was always with tears. It was really hard to give other people the bad news, but I didn’t feel fear until it came back after those first rounds of chemo, four rounds in total. 

Then I realized, “Oh, I might not win this fight. I really, actually might die.” That’s when I got afraid.

Shock, anger, and telling my family

My initial response was shock, bewilderment, and a little bit of anger with the powers that be. 

I’d been in a terrible car accident at 18 and felt I was saved and protected. I shouldn’t have lived through the accident; my best friend didn’t. In that moment, I remember being angry, wondering, “Why would you save me only for this?” 

I was angry, and then of course, I had to tell my family the news. That was the hardest part: giving other people the bad news, knowing I was going to break their hearts.

I went back home to New Jersey

The night I was diagnosed in the hospital, they didn’t really start describing my treatment plan right away. 

I didn’t love the care I was getting at that hospital. I had a lot of questions, but I wasn’t the type to start Googling everything. I didn’t want to know my chances or odds. I figured late and aggressive isn’t good; stage 4 is not good. But I was just intent on fighting. I didn’t want to know the odds; I was just going to fight. 

I knew I probably needed to go back home to New Jersey, New York City, where I could find the best care in the world. That’s what I did; I went back toward my family there and got care. I knew I needed to seek the absolute best care in the world, so I went back home to New Jersey and began treatment in Manhattan.

Surgical removal and four rounds of outpatient chemotherapy

The very first thing they did was remove the infected testicle; that had to go right away. That was done locally before I even went to New Jersey. Afterward, it was outpatient chemo, four rounds. I remember the doctor saying, “Over 50% chance,” and I thought, when you say that, it probably isn’t great news. That’s probably what you tell someone in a tough predicament. 

They actually stepped it down to stage 3, which felt positive. But I had a lump the size of almost two fists between my kidney and spine, two big lumps in my right lung, and a couple in my groin as well. It was already moving up to places you don’t want it to be. 

After chemo, they had plans for surgery to remove those as quickly as possible.

The first week or two wasn’t too bad until I got into the shower one day, shampooing my hair, and there was my hair in my hands. My dad was a hairstylist, so I asked him to shave it off rather than lose it bit by bit. 

Around week two or three, before the fourth round of chemo, the nausea started. That’s when the real symptoms came on: weakness, total lack of energy, like you have a really bad flu and can’t get out of bed, can’t keep food down. The fourth round was tough; it took me three or four weeks to recover enough to walk my dog around the block without feeling like I’d collapse.

The cancer started to grow again; I got further treatment

Right before the beach one day, I got a call: one of my scans came back, and the cancer was growing again. The tumors hadn’t disappeared; they’d shrunk, but some remained active. 

The hospital brought in a new doctor specializing in high-dose chemo and stem cell transplant. Because I was young and strong, physically in the best shape of my life at diagnosis, they ramped up the dose. 

I spent about three months in the hospital in New York. A few days before I started, I went to a Rangers game, then checked into the Cancer Society’s hotel near Madison Square Garden.

After the first four rounds, they placed a stent and removed a mass from my kidney and spine. It was a huge surgery, from sternum to pelvis with 42 staples. The lung surgery came after high-dose chemo. 

They planned to remove two lumps in my right lung. They took out the lower one (it turned out to be dead necrotic tissue) and left the other; it was attached to my biggest artery, and since it looked dead, they didn’t risk it.

It wasn’t fun. I felt imprisoned being in the hospital for 90 days, woken up at 4 a.m. every day for medication. The nurses were great, but it was hard. 

Fortunately, I was able to go home between some rounds, which I really fought for. I started writing my book and worked on digital marketing to keep busy.

The hardest part wasn’t just the physical toll but what I witnessed. Hearing the wheels of IV poles, watching people shuffling the corridors, all with this same slumped, defeated look of surrender. That sadness never leaves you. Having cancer—even when you’re in remission—stays with you.

Being NED, ringing the bell, and survivorship

Ringing the bell was incredible; just the joy of leaving the hospital, knowing I wasn’t coming back. 

My scans came back clear about three months later. The doctor called right away and told me, “Andrew, your scans are clear.” 

I was exhausted. I’d been in a lot of fights, literal and otherwise, but this was the hardest. 

Getting that news was a huge relief, but as a cancer survivor, every scan brings anxiety.

Now, it’s not just about surviving. I ask, “How do I make this worth it?” So many of the people I shared the hospital floor with are no longer here. For me, the challenge is making sure my time is meaningful.

Family, faith, and the mental and spiritual journey

My family was amazing; four aunts, and my father, despite his own serious health issues, helped however he could. My family came together for rides, help, and support. We’re close now, always dancing at weddings, celebrating survival together.

Mental health is a lot to unpack. After my car accident at 18, I felt an attachment to the hidden, magical part of the world. 

Faith became central for me; facing mortality is the scariest thing. All fears are rooted in the fear of death, and for me, overcoming that was overcoming everything. In some ways, cancer gave me no choice but to find this strength; it drew me closer to faith and helped me face my own mortality. 

I’m still trying to unpack those lessons, to speak them for others and help others find strength in their own lives.

My advice for others facing cancer

First, I offer my love and support. No one else can fight your battle for you, and even with family, you often feel alone. 

I believe that when we’re singled out for these challenges, it’s a reflection of our strength and value. Treat it as a challenge and fight to overcome it. Tap into your animal instinct; fight until the last breath, and let go of what’s out of your control. 

This life is just a dream. There’s so much more after this; there’s nothing to be afraid of.

Fight from a place of compassion and love. Be open, vulnerable, and authentic. Don’t be angry or create defense mechanisms; let people see your soul and your pain. Don’t give up. Give it all you’ve got. Life goes on, and your soul will continue.


Andrew P. stage 4 testicular cancer
Thank you for sharing your story, Andrew Ryan!

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More Metastatic Testicular Cancer Stories

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Categories
Cancers Integrative Integrative Therapies Lymphadenectomy Metastatic Metastatic Neck dissection Papillary Patient Stories Surgery Tall Cell Thyroid Cancer Treatments

Living with Metastatic Papillary Thyroid Cancer: Alyse’s Story

Living with Metastatic Papillary Thyroid Cancer (Tall Cell Variant): Alyse’s Story

Alyse’s experience with metastatic papillary thyroid cancer began unexpectedly in April 2024, turning her life on its head. A mother of two girls from New Jersey, Alyse had long prioritized health, exercising daily, leading group fitness classes, and modeling an energetic lifestyle for her daughters. The diagnosis of metastatic papillary thyroid cancer, tall cell variant, challenged her sense of certainty and forced her to confront the unpredictable nature of health.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Alyse’s experience was complicated by a family history of thyroid disorders and her own Hashimoto’s disease, an autoimmune disorder that can cause hypothyroidism or underactive thyroid, and which can also mask warning signs. She remained vigilant, undergoing regular thyroid lab panels and paying close attention to her body, which helped prompt timely medical intervention when a suspicious nodule was discovered during a routine examination. Even though her blood work was normal and she felt physically strong, a biopsy revealed metastatic thyroid cancer. The cancer’s aggressiveness heightened the shock of the diagnosis.

Alyse V. thyroid cancer

Navigating treatment brought obstacles, both practical and emotional. Alyse advocated for a highly experienced surgical team out of state and faced the financial strain of out-of-network care. She made an informed decision to postpone radioactive iodine treatment, given its risks for breastfeeding mothers and the tall cell variant’s lower response rates. Alyse’s recovery included recalibrating her fitness routine, emphasizing quality of life over rigid discipline, and embracing help from family as she rebuilt her physical and mental strength.

Alyse shares the complexity of living with “invisible” cancer, learning to balance vigilance with hope, and the importance of intentionally seeking mental health support. Through changes, setbacks, and new uncertainties, she focuses on meaning, faith, and the everyday moments that endure beyond diagnosis. Her story empowers other patients to advocate for themselves, question their options, and find personal fulfillment within and beyond cancer care.

Watch Alyse’s video and scroll through her edited interview transcript for more about how:
  • Self-advocacy in pursuing a comprehensive evaluation made a difference for Alyse as early diagnosis of metastatic papillary thyroid cancer can be complicated by normal lab results and few physical symptoms
  • Finding a treatment center and team with extensive experience can critically impact both physical outcomes and peace of mind
  • Alyse’s experience highlights how all-consuming the disease’s uncertainty can be, and why support for physical, mental, and emotional health matters so much
  • Quality of life is paramount; living fully, not perfectly, is crucial for all patients facing serious illness
  • Adapting to “what’s next” after treatment is its own transformation, one that includes letting go of perfectionism, accepting support, and rediscovering joy in the everyday
  • Patients are not defined by their disease; Alyse stresses the importance of not allowing cancer to become one’s whole identity

  • Name: Alyse V.
  • Diagnosis:
    • Thyroid Cancer (Papillary Thyroid Carcinoma, Tall Cell Variant, Metastatic)
  • Age at Diagnosis:
    • 36
  • Symptoms:
    • None before routine thyroid examination with her Hashimoto’s disease
    • Lump discovered during thyroid examination
  • Treatments:
    • Surgeries: neck dissection, lymphadenectomy
    • Integrative therapies
Alyse V. thyroid cancer
Alyse V. thyroid cancer
Alyse V. thyroid cancer
Alyse V. thyroid cancer
Alyse V. thyroid cancer
Alyse V. thyroid cancer
Alyse V. thyroid cancer
Alyse V. thyroid cancer

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.



Hi, my name is Alyse

I was diagnosed with metastatic papillary thyroid cancer, tall cell variant, in April of 2024. I am from New Jersey.

I got into fitness and working out about 15 years ago. I was just on that path of, “Let’s be healthy. What can I do?” I saw my mom watching fitness videos when I was in my mid-20s. I started getting into HIIT training and weightlifting. I was running for a while, and that became a huge part of my life, a major passion. I felt great. I always talk about the runner’s high, but there’s a lifter’s high, too; you feel great. 

I had been struggling with anxiety and depression before that and was always looking for what else I could do to help my mental health. Exercise helped a lot. That passion became a career. For a few years, I was doing group fitness, and I absolutely loved it. I loved the people I worked with, the clients who came in. I made that a huge center of my life and thought I was doing the right things. And then, of course, cancer came along later.

Fitness before and after my diagnosis

Exercise has always been an everyday part of life for me. At first, it’s a chore, but after a few months, you look forward to it. I got married, and two years later, I was pregnant, which was new for me as a personal trainer who loves to work out. I continued to exercise throughout my pregnancy. My midwife approved, and after having my first child, I would work out with my kids. They started joining in on the workouts or would remind me, “Hey, Mommy, you haven’t worked out today,” if I took a rest day. My oldest, especially, because my youngest is only two and a half, has been around throughout much more of my fitness journey and would always tell me to work out.

Now, showing my girls that exercise can be enjoyable and is just part of a healthy lifestyle is an integral part of my life. I tell them it’s important so that, when you’re 85, you can go up a flight of stairs and still be strong.

I was diagnosed with Hashimoto’s

I have a family history of thyroid disorders and autoimmune conditions, specifically hypothyroidism and Hashimoto’s. All my immediate family members have these conditions. 

After my first pregnancy, my midwife suggested I see an endocrinologist to check my thyroid levels. I wasn’t on any medication during that first pregnancy. At six weeks postpartum, I saw the endocrinologist, who told me I had postpartum thyroiditis, but it wasn’t severe enough to need medication. I left it at that and didn’t revisit it, especially since I wasn’t planning on having more kids.

Fast forward four or five years, and I decided to have another child. I knew I needed a full thyroid panel, not just a TSH test. I found a great endocrinologist and had full thyroid labs done. It turned out I had full-blown hypothyroidism. I had all the symptoms: tiredness, fatigue, and hair loss. On top of that was Hashimoto’s, which explained things like getting sick more often and for longer, as well as joint pain. My knee pain, which I thought was from exercise, was connected to Hashimoto’s. That was in May of 2021. 

I started immediately on a T4/T3 combination and became pregnant a year later, remaining on medication throughout that pregnancy.

Living and training with an undiagnosed thyroid disease

It was frustrating because I felt irresponsible not knowing I had a thyroid condition sooner, especially since my first pregnancy was wonderful up until the very end. I developed preeclampsia and had to be induced, ending with a C-section. Later, I learned that untreated hypothyroidism can actually lead to preeclampsia. I was disappointed I didn’t know this earlier. 

Through fitness and training, though, it didn’t bother me much. Medication made me feel better. I still had joint pain, but would just monitor exercises to avoid aggravating it. Mentally, it didn’t affect me too much either. I knew I was doing the right things and feeling better, setting myself up for a successful pregnancy. My second pregnancy was wonderful, no preeclampsia, and I felt like, “Yes, I prevented it. We’re okay now.”

From the time of my initial Hashimoto’s onset to my cancer diagnosis, I had labs run every six months. Every six months, we did a full thyroid workup: TSH, free T4, free T3, reverse T3, and TPO antibodies to check the Hashimoto’s. Everything was stable and looked great.

The moment the thyroid nodule was discovered

In March of 2024, one year postpartum, I was fully breastfeeding and not sleeping much. I went to see my endocrinologist. Labs looked good, but he did a manual thyroid exam, where you tilt your head back and swallow several times, so he could feel for abnormalities. He was taking a long time, and I knew he was going to tell me something I didn’t want to hear. He said, “You have a nodule on your thyroid.” Immediately, my heart sank, and I kind of blacked out. 

My instincts, which I call the Holy Spirit, told me, “You have thyroid cancer.” I already knew, in my heart, that this was a life-changing moment.

He said to go for an ultrasound and maybe a biopsy if needed.

During the two weeks between seeing him and having the ultrasound, I dove headfirst into books, YouTube videos, and all the Google searches. I learned about thyroid cancer symptoms, treatments, and surgery. Most nodules are benign, but I knew this wasn’t benign. 

Most thyroid cancers are treatable with surgery and sometimes radioactive iodine, with a very high five-year survival rate, about 99%. That brought some comfort about the potential diagnosis on paper, but I still couldn’t believe this was happening when I had spent my life trying to be healthy. “I work out all the time, I eat well, so how could this actually happen?”

“How can this be cancer?” – I had no symptoms, but it was cancer

My blood work was completely normal. They did a CBC and full thyroid panel; everything was normal. On paper, nothing suggested there was anything wrong except for the Hashimoto’s. 

It’s frightening and confusing to know you can have cancer with no symptoms, feeling totally fine. I wondered, “If this is cancer, why do I feel so good? Aren’t I supposed to be sick or debilitated?” Part of me doubted my intuition (“It has to be just a nodule”), but I still knew there was no other explanation. 

My main concern became, “Am I going to die suddenly from this? Am I going to leave my husband and two kids behind?” It was terrifying, but also confusing, because there were no symptoms. No pain, nothing to hint at cancer.

The moment everything changed

Two weeks after the ultrasound, I had the biopsy because the ultrasound showed it wasn’t just a nodule. My endocrinologist said there was multiple lymph node involvement and a large one under my collarbone. I never noticed or felt it. 

He urged me to get it biopsied because whatever it was seemed to be involving other tissue and nodes. I scheduled the biopsy for two weeks later. 

I didn’t even want the biopsy; I always thought if I had cancer, I’d just live with it. But when faced with reality, opinions change. I realized I had to know.

The biopsy was incredibly painful, more than I expected. The ENT, who was also the thyroid surgeon, had great bedside manner, which helped. The day before, as he held the ultrasound probe to my neck, he left the room and then came back and asked, “Are you a straight shooter? Can I be honest with you?” I said yes. He said, “You have thyroid cancer. It has spread to your lymph nodes on the left side of your neck. I don’t even need to do a biopsy. I’m that sure.” 

The next hour, he talked through surgery, neck dissection, radioactive iodine, the fact that I was high risk and not low risk. He said it could have metastasized to other parts of my body and requested a CT scan of my chest.

Nothing I had read prepared me for those statements. I was told it was low risk, but this was not low risk. He said this had probably been growing for ten years. That was shocking. I’d had two children during that time. If I’d known I had cancer, I wouldn’t have had kids.

Advocating for a second opinion: choosing the right surgeon

After the biopsy, I was scheduled for surgery with that ENT two months out. He joked, “You’ll be hit by a truck before you die of this,” which was oddly reassuring. But I had a CT scan, which showed a lot of lymph node involvement and a chest nodule on the same side as the cancer. 

I asked how often he did neck dissections; he said, “Twice a month.” I wondered, “Is that a lot or a little?” He mainly did thyroid removals and occasional neck dissections.

With time to research, I found the Thyroid Center in Tampa, Florida. They do these surgeries all day, every day. Their team is world-renowned. I felt confident in their abilities after a phone and an in-person consultation. They ran comprehensive evaluations, went over all the details, and gave me confidence that they were the right fit.

Our health insurance deductibles were extremely high, and the Tampa center wasn’t covered. We ended up paying for the surgery with donations from friends and people in our church. The hospital that took my insurance wanted the deductible up front. God provided the finances for us to have the surgery.

There was also pressure about radioactive iodine, but breastfeeding mothers can’t have that treatment right away. Even after stopping breastfeeding, you have to wait months. The radioactive iodine can go into breast tissue and increase breast cancer risk. I decided to hold off.

How my surgery went

My husband, children, and I flew to Tampa, planning to stay at least a week post-surgery. The staff was wonderful; kind, attentive, and detail-focused. Dr. Roy, my surgeon, explained everything ahead of time, including surgical risks, the potential effect on my voice, and how they would operate. I said, “Let’s just do it. It’s okay if I can’t talk again.”

The surgery lasted about three hours. I woke up vomiting, which, given the incision, was difficult. My husband and kids weren’t there immediately, but the staff checked on me regularly. I spent one night in the hospital with two drains in my neck.

My neck and upper back were very sore afterwards, as expected. The team got me up and walking right away to prevent blood clots and had a physical therapist work with me on shoulder exercises to prevent frozen shoulder. About 12 hours after surgery, I was feeling much better. All I could stomach to eat was a huge piece of chocolate cake.

They were diligent about medication, and I want to praise them for monitoring my parathyroids. After an invasive thyroidectomy, parathyroids can be shocked, controlling the body’s calcium. They checked calcium levels every few hours to ensure it didn’t drop dangerously low, and I was on calcium supplementation for four to six weeks. I had never come across parathyroid risks in all my research, so their vigilance was admirable.

I learned about my tall cell variant

After surgery, I returned home to New Jersey to recover. Parathyroid and other levels looked great. Then I received the surgery and pathology reports. The patient gets them before the doctor. I read through all 40 pages. They removed 65 lymph nodes from the left side of my neck, six of which were positive for papillary cancer. The pathology described how difficult and invasive the surgery was, with 20 areas of new cancer growth found during the operation.

Finding out it was a “tall cell” variant was shocking. I learned “tall cell” is more aggressive than typical papillary thyroid cancer; often resistant to radioactive iodine, oral chemo, or radiation; and tends to recur.

That scared me deeply. Did I do all this for nothing? Thankfully, a nurse practitioner called 20 minutes after I read the report and confirmed the findings, taking time to walk me through what it meant.

My surgeon said radioactive iodine probably wouldn’t work. That confirmed my decision not to pursue it, but left me wondering, “What am I supposed to do from here?” My endocrinologist said to “watch and wait,” which meant waiting to see if it makes its next move. 

Six months after surgery, I had my first post-op ultrasound and labs. Thyroglobulin was very low (0.2), but a new lymph node had appeared just under my scar line. It may have been microscopic during surgery and was now growing. The option was a biopsy or more surgery, but I couldn’t face another surgery so soon. I decided to leave it alone and forget about it for a while.

Adjusting to my new normal

That was in March 2025. Since then, my recovery has been great. I never developed frozen shoulder and returned to working out three to four weeks after surgery, once cleared. 

The first three weeks after surgery were challenging; I couldn’t pick up my daughter, do laundry, vacuum, or any of the stay-at-home mom tasks. My seven-year-old, mother, and husband helped a lot. Mentally, that was the hardest period, but once I resumed exercising, things improved.

I feel strong. I’ve lost the baby weight I carried for well over a year postpartum. Now, instead of obsessively working out six days a week or 90–120 minutes per day, I focus on maintaining muscle mass with just two to three 30-minute sessions each week. I also take walks and keep my routine less stressful, giving myself more grace.

I found out my cortisol was extremely low, which meant my body was burnt out. Exercising more would just fuel that fire, so now, exercise is part of my life, but not an obsession. I still love it, just not at the old pace.

My mental health and coping with uncertainty

At the six-month post-surgery appointment, learning that a new lymph node was there made me wonder what the next year or next 20 years might hold. Would this thing take over my body? I was so steeped in research, but my husband asked, “Are you applying any of this to your life?” The knowledge made me feel less alone, but I wasn’t making changes, so I decided to stop reading and just try to forget I had cancer for a while. I prayed a lot.

I’m still being pressured to do radioactive iodine or see an oncologist. I’ve called several oncologists; many don’t even treat thyroid cancer. I left it alone for now and continued to pray, ”Lord, show me what treatment is right.” If nothing is right, then I trust nothing will be shown.

Living with cancer means walking around feeling and looking healthy, but always knowing it’s there. My oldest, who is eight, understands some things and knows I needed surgery, but doesn’t know the extent. It’s hard not to be able to communicate the full situation to my kids. But the Lord has blessed me: I feel fantastic, am at a healthy weight, and am still exercising. For me, quality of life matters more than quantity. I’d rather live a shorter, fulfilling life than a long, miserable one. Right now, I feel great and live in that joy.

Exploring integrative and alternative options

Being told to “watch and wait” or that repeated surgeries were the only solution was not realistic, especially with the risks and scarring involved. My surgeon explained that oral chemo pills exist, but were not beneficial and had many risks. As treatment options kept narrowing or being denied to me, I realized I’d have to find another path if I wanted something besides radioactive iodine or repeated surgery.

I prayed, ”God, show me what I should be doing.” If doors closed, I trusted that meant I shouldn’t take that route. Even getting an oncologist appointment became impossible; one had a nine-month wait. 

My research explored options like hyperthermia, which is sometimes used for certain cancers alongside chemotherapy or radiation. I hoped to try it without those, but the California hyperthermia center turned me down. That led me to consider care outside the United States.

What I want others to know

Cancer is a teacher. Cancer is a gift. This does not have to be a death sentence. It has given me deep insight into my own life and areas that were not working for me, like overexercising. Stress and mindset also play a role. How are you living? Handling anxiety? Dealing with dysfunctional relationships or unresolved issues?

See a therapist or mental health practitioner. At the six-month ultrasound, when I learned the cancer had come back, I knew I needed to talk to someone outside my family and friends. Over the past six or seven months, that has helped tremendously. 

Confide in someone unrelated to you or even a cancer support community. Suppressed feelings and emotions come out in other ways; I believe that was a trigger for me; not voicing my feelings, not asking for forgiveness, or not forgiving others. That’s not about curing cancer, but about healing mentally, bringing more joy and peace. 

Don’t let cancer become your identity. You are different from what’s happening to your body.

I’ve continued exercising and traveling. I’m still doing the things that bring me joy. Many people lose themselves to cancer and let it become them. Don’t let it become you, because you are different from the cancer that’s happening to you.


Alyse V. thyroid cancer
Thank you for sharing your story, Alyse!

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Share your story, too!


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Categories
Chemoradiation Head and Neck Cancer Nasal Squamous Cell Carcinoma Patient Stories Reconstruction Subtotal rhinectomy Surgery Treatments

“My Nose Was Changing Shape”: Vikki’s Nasal Squamous Cell Carcinoma Experience

“My Nose Was Changing Shape”: Vikki’s Nasal Squamous Cell Carcinoma Experience

Courage, Connection, and Acceptance with Nasal Squamous Cell Carcinoma

What began with a series of small nosebleeds in late 2019, would become a diagnosis Vikki never expected: nasal squamous cell carcinoma, a rare cancer that can be classified as head and neck cancer or a form of skin cancer. Living in the United Kingdom, Vikki is a young mother devoted to fitness, nature, and her children. These nosebleeds persisted for years. Multiple doctors treated her for infections and prescribed cauterization, but no one recognized the underlying issue. Over time, her nose visibly changed, her septum collapsed, and the pain intensified.

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

Only after demanding a biopsy in summer 2024 did Vikki finally learn the truth: squamous cell carcinoma had invaded her septum and bone. The diagnosis of this kind of head and neck cancer was confusing and shocking, yet came with little support. Vikki said, “I think I’ve just been told I’ve got cancer. What’s happening?” 

Vikki F. nasal squamous cell carcinoma

As she sought answers, Vikki’s head and neck cancer experience quickly accelerated. She underwent aggressive surgeries, including substantial removal of nasal tissue, and months later, reconstructive surgery on her skull, skin, and arm. Hospital stays were grueling, and she chose not to see her two-year-old daughter until she recovered some sense of herself.

Vikki endured daily radiotherapy, weekly chemotherapy, and challenging, life-altering side effects: she lost her sense of taste, struggled to eat, and had to learn to live with a major facial difference. She had periods during which she couldn’t leave the house because she couldn’t deal with people staring at her.

Her head and neck cancer experience, however, is a testament to personal transformation. Vikki found new confidence and meaning through connection, community, and self-acceptance. It heartened her to learn that her appearance was the least interesting thing about her. Today, she advocates for awareness, encourages others to find the right support, and insists that appearance is never the measure of a person’s worth.

Watch Vikki’s video and scroll through the edited transcript of her interview below. You will:

  • See that persistent symptoms deserve thorough investigation. Keep pushing if answers aren’t clear
  • Learn that appearance changes from head and neck cancer can cause deep psychological distress, but can never diminish one’s worth
  • Realize that who you are matters more than how you look. As Vikki says, “It is the least interesting thing about you”
  • See how support groups and sharing with others facing facial differences can reduce isolation and build resilience
  • Explore Vikki’s transformation: From valuing external beauty to embracing connection, self-compassion, and a broader definition of identity

  • Name: Vikki F.
  • Age at Diagnosis:
    • 34
  • Diagnosis:
    • Head and Neck Cancer (Nasal Squamous Cell Carcinoma)
  • Symptoms:
    • Nosebleeds that persisted for years
    • Nose changed in shape
    • Nasal pain
    • Migraines
  • Treatments:
    • Surgeries: subtotal rhinectomy, reconstruction surgery including radial forearm free flap, bone grafts, and cartilage
    • Chemoradiation
Vikki F. nasal squamous cell carcinoma
Vikki F. nasal squamous cell carcinoma
Vikki F. nasal squamous cell carcinoma
Vikki F. nasal squamous cell carcinoma
Vikki F. nasal squamous cell carcinoma
Vikki F. nasal squamous cell carcinoma
Vikki F. nasal squamous cell carcinoma

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.



I’m Vikki

I’m Vikki. I live in the UK. I was diagnosed with nasal squamous cell carcinoma in August 2024.

I love rock climbing, being in the sea, surfing, and hanging out with the kids on the beach. I’m passionate about health, fitness, and longevity, and I’m a keen reader.

My early symptoms: nosebleeds and pain

Around October 2019, I started having little nosebleeds. I assumed it was winter, it was because of me getting older, or it was due to the air conditioning drying out my nose. 

Over the next three years or so, they got worse and more frequent. Every time I touched my nose, when I’d wash my face or anything, it would bleed, sometimes for 5 to 10 minutes. My nose became quite sore. My stepson would accidentally bop my nose, and I’d see stars from the pain. It would bleed for a whole toilet roll’s worth. 

Doctors treated me for sinus infections and kept cauterizing the sore, hoping the bleeding would stop, but no one knew the true cause.

My nose changed shape

By October or November 2023, I noticed my nose was changing shape. A red patch appeared, and I was getting a bit of a hump. I had to produce photos of my side profile: summer 2023, my nose was straight, and by summer 2024, there was a big dip and a hook. My septum had collapsed. That made doctors finally pay attention. 

I couldn’t wear sunglasses due to pain, and I had migraines, which worsened.

My diagnosis experience was shocking and confusing

Eventually, someone biopsied me. Inside my nose was a kind of skin cancer.

After insisting, I got a biopsy in July 2024. A few days later, I had a three-minute appointment. “It’s SCC,” or squamous cell carcinoma, they said. I asked, “What’s that?” They said, “You need treatment.” 

I got a leaflet, “You have cancer,” and was told to call a nurse. Nobody explained what was happening. 

When I reached the nurse on Monday, she booked an appointment with the head of ENT and a Macmillan cancer nurse. Only then did my husband and I learn it had spread and taken a lot of my nasal tissue, but the hospital couldn’t even say which team would treat me.

I had mixed emotions, relief, and realization

The symptoms had worsened for so long that part of me expected something serious. But nothing had suggested cancer. I was relieved to know what it was. Everyone was light-hearted since “SCC is the best skin cancer to have.” 

But Googling showed how serious it could be if it spread. And scans revealed it had gone into my septum and nasal bone. 

I was convinced I was going to die; I experienced panic attack-level fear. No one told me about the risks or the need for additional tests.

Finding the right care team

I’m lucky to live near Southampton General Hospital, a specialist cancer center. I was referred to skull base and maxillofacial specialists due to concerns that it was in my skull. 

They did more scans. The teams decided the cancer had not spread to the skull bone, so I stayed with the Maxfax team for treatment planning.

I was invited to an MDT meeting and met the leading head and neck surgeon in the UK. Scans showed that the cancer had spread around one nostril and deep into the septum and nasal bone. Half my nose was okay, but the cancer breached the skin. 

The plan was to remove all cancerous tissue and my whole septum. Because I was young, they prioritized the cosmetic outcome and immediately involved a plastic surgeon. The option was to do a subtotal nose removal, then see how much could be saved. 

The surgery was scheduled for late October or early November, with histology afterward to determine the next steps.

We found that my cancer was aggressive

Histology took over three weeks and showed the cancer was very aggressive. It had started to get into the nerves and capillaries. 

Although it hadn’t spread to lymph nodes or lungs, my team decided to throw everything at it: additional surgery to clear margins, daily radiotherapy, and weekly chemotherapy. No reconstruction until six months after completion.

Facial reconstruction, hospital stays, and my recovery

I had my first reconstructive surgery in June; multiple smaller surgeries will follow. 

The process was physically and emotionally grueling. Post-surgery, nerves, tissues, and even bone from my skull and skin from my arm were repurposed for my face. 

I wore a cast on my arm. I had wounds on my hip and a swollen neck. I stayed nine days in the hospital for close monitoring.

I opted not to let my two-year-old daughter visit at first because I didn’t look, sound, or smell like “mummy” and was heavily medicated. 

It was the longest I’d ever left her. It was incredibly hard. Dad handled things at home, though.

For the first two years, monthly scope checks and six-month CT scans are standard. Additional surgeries are scheduled, and I have another nine months of adjustments ahead.

My treatments had brutal effects

Radiation to the head and neck is brutal: within days, I started experiencing side effects like swollen lymph nodes, severe mouth blisters, and constant vomiting after chemo. I needed to take morphine for the pain.

By week four, I had permanent “sunburn” on my face, hair loss where the radiation shot through, dry mouth, and chronic mucus. 

Eating was nearly impossible; I survived on protein shakes with numbing agents.

Despite knowing treatment had an end date, the life-changing effects were the facial difference and the changed appearance. Not leaving the house because I had to face stares and comments was the hardest thing. 

My confidence grew slowly, and a cancer appearance styling workshop became a turning point.
Compelling Quote: “Without sounding arrogant, I was a reasonably attractive, young woman. And now I have a substantial facial defect… I’ve had periods where I couldn’t leave the house because I couldn’t deal with people staring at me.”

Mental health, identity shift, and life lessons

My mental health has been up and down; with previous experience in therapy and coaching, I could sometimes pull out of spirals, but pain and shame were frequent. The shame was both for my appearance and for having cancer “impact my family.” 

Nutrition, exercise, and kindness helped speed recovery.

Cancer shifted my identity from valuing appearance and work to embracing connection, kindness, and fun. 

My self-worth no longer rests on how I look. “It is the least interesting thing about you.”

My advice for other patients

Sometimes cancer just happens; it’s not your fault. 

Many head and neck patients will experience visible changes, but appearance isn’t the most important part of who you are. If anyone judges you for it, they’re not your people.

Head and neck cancer isn’t well-known, even among doctors. I had nosebleeds for four years and never suspected cancer; neither did anyone treating me. Appearance changes make patients more likely to hide, and there’s a gap in awareness, both socially and medically.

Support groups were hard to find, especially UK-based. Americans share resources not available in the NHS system, but the Head and Neck Cancer UK group was helpful. After treatment, I found a dog bite support group for facial reconstruction, too. 

Sharing my story is my way of helping others feel less isolated.


Thank you for sharing your story, Vikki!

Inspired by Vikki's story?

Share your story, too!


More Head and Neck Cancer Stories

Vikki F. nasal squamous cell carcinoma

Vikki F., Head and Neck Cancer (Nasal Squamous Cell Carcinoma)



Symptoms: Nosebleeds that persisted for years, nose changed in shape, nasal pain, migraines

Treatments: Surgeries (subtotal rhinectomy, reconstruction surgery including radial forearm free flap, bone grafts, and cartilage), chemoradiation
...
Red S. tongue cancer

Red S., Tongue Cancer (Squamous Cell Carcinoma of the Tongue), Stage 3



Symptom: Persistent tongue ulcer that increased in size

Treatments: Surgeries (partial glossectomy, flap surgery), radiation therapy
...
Alyssa N. feature profile

Alyssa N., Adenoid Cystic Carcinoma



Symptoms: Persistent jaw pain, lightning-like facial pain during the first bite of meals

Treatments: Surgery (tumor removal), radiation
...
Eva G. feature profile

Eva G., Oral Cancer, Stage 4



Symptoms: Sore on the tongue, which caused pain during eating and speaking; changes in the color and texture of the tissue where the sore was located
Treatments: Surgery (partial glossectomy, radical neck dissection, reconstruction), radiation
...
Teresa B. breast cancer survivor experience

Teresa B., Recurrent Breast Cancer (Hormone-Positive), Oral Cancer (Lip Cancer), and Skin Cancer (Melanoma)



Symptoms: Lip cancer: chapped lips & a pimple-like growth on lip, breast cancer: enlarged left breast with lump, melanoma: none

Treatments: Surgeries (bilateral mastectomy with reconstruction, lumpectomy, craniotomy, Mohs, surgery, wide local excision), hormone therapy, radiation therapy
...

Categories
AYA Cancers Chemoradiation Chemotherapy Colorectal Lobectomy Metastatic Metastatic Patient Stories Surgery Treatments

Planning Love and Life with Stage 4 Colorectal Cancer: Kayleigh’s Story

Planning Love and Life with Stage 4 Colorectal Cancer: Kayleigh’s Story

Living with stage 4 colorectal cancer gives every moment extra weight, especially for Kayleigh, who received her diagnosis in May 2025. Her experience began with blood in her stool and an immediate call to her doctor with pictures, leading to a complex healthcare journey that included referrals, waitlists, and repeated self-advocacy. Kayleigh’s colorectal cancer diagnosis changed her life’s trajectory, but her determination kept her moving forward, especially as she and her fiancé planned their wedding amid ongoing treatment.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Despite the demands of her colorectal cancer treatments, namely, chemotherapy, chemoradiation, and planned surgeries, Kayleigh’s spirit shines through. Side effects, like neuropathy and fatigue, presented real challenges, but wedding preparations and physical activity became her anchors. She openly shares how her mental health was tested by uncertainty and waiting, emphasizing the importance of finding support and honest communication with loved ones.

Kayleigh G-P. colorectal cancer

Navigating the twists of treatment, Kayleigh remains steadfast in advocating for herself. She presses for appointments, asks questions, and ensures that her voice is heard in a system that can be prone to delays. She highlights how looking “healthy” can mask profound struggle and how learning to accept help, slow down, and savor small moments fueled her resilience.

Kayleigh’s journey underscores that doing everything “right,” from diet and exercise to visiting the doctor regularly, doesn’t render anyone immune to cancer. Sharing her perspective, she reminds patients that no experience is typical, treatment doesn’t always mean isolation, and self-advocacy is essential for progress. Her hope rests in her care team’s curative intent and her own ability to adapt, accept, and keep living meaningfully.

Watch Kayleigh’s video and scroll through her edited interview transcript to learn more about how:

  • Self-advocacy is essential: Patients must speak up and push for timely care when symptoms don’t resolve
  • Maintaining life milestones (like wedding planning) can be empowering, even during intensive treatment
  • Cancer often doesn’t “look” how others expect. Challenges are frequently invisible
  • Support from loved ones makes vulnerability easier and provides strength
  • It’s important to trust your instincts and accept support; transformation comes from learning persistence, self-compassion, and empowerment through advocacy

  • Name: Kayleigh G-P.
  • Diagnosis:
    • Colorectal Cancer
  • Staging:
    • Stage 4
  • Age at Diagnosis:
    • 33
  • Symptoms:
    • Blood and mucus in stool
    • Increased frequency and urgency of bowel movements
    • Small bowel movements
  • Treatments:
    • Chemotherapy
    • Chemoradiation
    • Surgeries (planned): lower anterior resection, lobectomy
Kayleigh G-P. colorectal cancer
Kayleigh G-P. colorectal cancer
Kayleigh G-P. colorectal cancer
Kayleigh G-P. colorectal cancer
Kayleigh G-P. colorectal cancer
Kayleigh G-P. colorectal cancer
Kayleigh G-P. colorectal cancer

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.



Hi, I’m Kayleigh

I was diagnosed with stage four colorectal cancer. That was in May 2025. I’m from Vancouver, BC. My symptoms started in 2024, and I was diagnosed in 2025.

Getting married is the be-all and end-all for my fiancé and me: to have this chapter come to a close and to start our new life together. I’m a little crazy for keeping the wedding date as is because it’s very close, it’s in April of next year. We’re six months away now. 

I’m finishing treatment in January and may have two surgeries back-to-back before the wedding. This is the one thing I’m not willing to let go of and not let cancer take away from me.

It’s extremely important to have moments, like the wedding, that cancer cannot take away. It’s given me a new perspective on life. I’m learning to slow down and appreciate the little things.

Wedding planning is my only distraction right now. Between that and working out, which I haven’t been able to do since radiation due to side effects and skin irritation, planning is my only way to keep focused.

I think some of our engagement photos are my favorites. There are also some photos in which my family visited BC; those are my favorite memories to look back on because they are so happy, and I love showing them around BC and trying to convince them all to move out here.

My first colorectal cancer symptoms

The start of my journey is not typical. It began with just one symptom, blood in the stool one day. I took a photo for my doctor and called right away: “There’s blood in my stool. I need to see you.” This was very out of the norm for my body. 

My doctor thought it was hemorrhoids and ordered blood work. My ferritin was low, so we did another blood test in two months, and it was still low. I asked for a FIT test since my main symptom was blood in the stool, which came back positive. Surprisingly, I wasn’t offered a colonoscopy right away. I did research and found that a positive FIT test qualifies you for a colonoscopy, so I asked my doctor to put in the referral. I requested a female doctor since my fiancé was leaving for a month and I didn’t want to be uncomfortable. 

Unfortunately, the referral went to a doctor no longer doing colonoscopies and was nine months behind. We discovered this three months later after following up with no response. Another referral was put in, marked “semi-urgent” since it was now March. After waiting a month, I still hadn’t heard back. By April, my symptoms were ramping up: blood in stool every other week, then weekly.

The symptoms weren’t a large amount. I thought maybe it was IBS or colitis. Never considered cancer. My naturopath also said it was likely hemorrhoids. When I finally saw a surgeon, I explained my symptoms and how they were affecting my mental health, asking to expedite the referral. The surgeon wasn’t concerned, thought nothing would be found, and declined to see the photos I offered. He said, “You’re young, healthy, I don’t think we’ll find anything, but we’ll do the colonoscopy due to blood and mucus.” He quickly ate his words.

I persisted in the face of diagnostic delays

The delay was from October 2024 to the end of May 2025. My mental health deteriorated during this time. For six months, not knowing what was wrong was the hardest part. Constantly searching online and on ChatGPT, trying to figure out what it could be, became my focus. I talked about it all the time with my fiancé; I spent so much time Googling, trying to find answers because I wasn’t getting any.

My fiancé has been my rock throughout this. We’re an open book, although topics like stool were hard to discuss at first. I had to get used to being vulnerable and talking about it all the time. He made it easier and was so amazing and understanding; he made the whole process more bearable.

I’d visit my GP multiple times to update symptoms. I wanted everything in my record and took time off work for appointments. I emailed the surgeon’s office, feeling I had to take matters into my own hands. I called hospitals and made sure I was on cancellation lists for faster appointments with hospitals, MRIs, and CT scans, ensuring my name didn’t get lost.

I took the initiative as a patient

Early on, as I mentioned, I acted quickly when symptoms appeared; I didn’t wait. I’m very health-conscious and have health anxiety, so I put the process in motion immediately. Despite rapid action, it was still stage 4.

ChatGPT was a saving grace for my mental health. Even ChatGPT suggested ulcerative colitis, not cancer, which actually put me at ease for a while. Whenever I have questions, I ask ChatGPT and take answers with a grain of salt, using it to calm my mind until I’m able to ask my doctors.

Finally getting a colonoscopy and an initial diagnosis

After months of delays, I got the colonoscopy, and the doctor had been convinced nothing would be found. During the procedure, I overheard the word biopsy and saw something on the screen, making it real. The full realization hit when we got the biopsy results on my mom’s birthday: It was cancer. That day was really emotional.

For a while, we didn’t know the stage. Only recently, it was confirmed as stage 4 due to a nodule in my right lung that couldn’t be biopsied. A recent CT scan showed the nodule had shrunk, confirming stage 4, but with positive news, it had decreased by more than half.

My fiancé was beside himself, but quieter and more internal. He wanted to leave space for me to be emotional, to be there for me rather than show his own emotions. He’s been amazing, and now he shares his feelings too, though he tries to support me first.

My treatment approach and plan

My treatment plan is TNT, total neoadjuvant therapy, all chemo upfront in a sandwich approach. Six rounds of one chemo drug combination; three rounds, then chemoradiation, then three more rounds. 

Surgery is planned for the main tumor and the lung. I’m considered oligometastatic, so they’re treating me with curative intent. I’m grateful to be in the best-case scenario of stage 4.

The latest CT scan showed liver spots, which may be due to different CT machines; if they are metastases, things could be more complicated. The doctor isn’t worried, since everything else is shrinking. My tumor, lymph nodes, and lung nodule have shrunk dramatically, indicating chemosensitive cancer.

If the tumor remains after chemo, and I’m eligible, I’ll have a large surgery, lower anterior resection and lung lobectomy, early next year.

I’m coping with side effects and protecting my mental health

I’m fortunate radiation was harder than chemo; the pain was intense, but chemo is more manageable. I get neuropathy that fades in a week, first bite syndrome, and cold sensitivity that resolves. I can still work out, run, walk, and go to the gym. The fatigue is manageable; I’m tired and take more naps, but it’s tolerable.

Working out and running are critical for my mental health. Every day is more livable if I exercise. Walking, talking with my fiancé, journaling, reading cancer books, and meditation help me stay grounded. Sometimes I focus on wedding planning to distract myself.

I stay on top of appointments and procedures. If my doctor wants me to have an MRI or CT and I haven’t heard back, I call after a reasonable time. I don’t just rely on the system; gentle reminders and ensuring I’m on cancellation lists keep things moving, especially with a wedding deadline.

Key lessons I’ve learned

The biggest lesson is that you never know what others are experiencing based on how they look. 

When people see me, they say I look great, but it’s a misconception; I may feel terrible inside. You can do everything right, eat healthy, exercise, avoid alcohol, and have no family history, and still end up here. Sometimes, it’s just luck or the environment.

What’s holding me together is knowing my team is treating me with curative intent. I’m holding on to that as my silver lining. I’m doing everything within my control to give myself the best chance: staying active, being an advocate.

Self-advocacy and what keeps me going

Self-advocacy is crucial. You are your own best advocate and have your best interest in mind; don’t leave it to others. Take action to help yourself, nourish your mind, and avoid spiraling. 

Speak up, ask questions, and be a respectful thorn in the system. You matter, and you need to do everything you can to make sure things move forward. 

Looking forward to my wedding keeps me going. It’s a goal at the end of this journey, a source of joy in chaotic, emotional times. The emotional roller coaster is tempered by focusing on things that bring happiness.

My advice for others

Take things into your own hands. Remember, you have your best intentions in mind and advocate for yourself. If something doesn’t seem right, speak up. Be a thorn in the system’s side (respectfully). 

Your life matters. Do everything you can to push things along if they’re not going as you hoped.

Chemo and radiation can be manageable. You can still live a daily life, see friends, exercise, and enjoy yourself. Treatment doesn’t take everything away. Everyone experiences and reacts to treatment differently. I thought I’d be debilitated, but I have been able to do more than expected.

It doesn’t take everything away from you. Everyone’s different.


Kayleigh G-P. colorectal cancer
Thank you for sharing your story, Kayleigh!

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More Metastatic Colorectal Cancer Stories

Lindsay

Lindsay D., Colon Cancer, Stage 4



Symptoms: Lump in pelvic area, funny-smelling food, weight loss
Treatment: Chemotherapy, colectomy (surgery)

Categories
Chemotherapy EBV-Positive Gastric Adenocarcinoma Gastric Adenocarcinoma Immunotherapy Metastatic Patient Stories Stomach Cancer Treatments

Outspoken Self-Advocacy: Frank’s 2nd Opinion Found His EBV-Positive Stage 4 Stomach Cancer

Outspoken Self-Advocacy: Frank’s 2nd Opinion Found His EBV-Positive Stage 4 Stomach Cancer (Gastric Adenocarcinoma)

Frank’s experience with stage 4 stomach cancer (gastric adenocarcinoma) began with a cascade of subtle but relentless symptoms. Living in Georgia, Frank describes how unexplained weight loss, night sweats, and unusual fatigue prompted him to seek medical attention. When he developed swelling in one testicle and persistent, dull back pain, the uncertainty of his situation only deepened. Despite initial misdiagnoses of testicular cancer and lymphoma, his persistence in consulting multiple specialists eventually led to the correct identification: EBV-positive stage 4 gastric adenocarcinoma.

Interviewed by: Keshia Rice
Edited by: Chris Sanchez

His experience included the determination that his stomach cancer was associated with the Epstein-Barr virus or EBV. Frank’s self-advocacy to get second opinions and his readiness to challenge initial diagnoses proved critical. This became especially true as he navigated treatments that ranged from chemotherapy for a misdiagnosis to targeted therapies for his actual condition. He shares how grappling with disappointment over uncertain origins, coping with the side effects of chemotherapy, and finding solace in his wife, dog, and wider cancer support networks was marked by emotional highs and lows.

Frank B. stomach cancer

Frank’s outlook has been shaped not just by the disease or its treatments, but by a growing empathy and willingness to guide others. He describes the transformation from feeling isolated and overwhelmed to discovering the power of men’s cancer support groups. As he continues maintenance therapy and adapts to his “new normal,” Frank champions community, openness, and self-care, especially for men who might otherwise turn inward in the face of such challenges.

Frank’s candid reflections provide clarity on the realities of stomach cancer and underscore how seeking support and second opinions can change the course of treatment, and how connection, even in difficult times, can transform isolation into hope.

Watch Frank’s video above, and read his edited interview transcript below to delve into his story. You’ll learn how:

  • Prioritizing your own intuition and seeking second opinions can significantly alter the course of a health experience
  • Side effects from treatments and the disease often go beyond the physical, affecting identity, routines, and relationships
  • Support networks, especially those focused on men, can be transformative and counter feelings of isolation
  • Every patient’s experience is unique, and compassion toward others can deepen through health challenges
  • Transformation: Frank shifted from private struggle to active, empathetic advocacy within the cancer community

  • Name: Frank B.
  • Diagnosis:
    • Stomach Cancer (EBV-Positive Gastric Adenocarcinoma)
  • Age at Diagnosis:
    • 37
  • Staging:
    • Stage 4 (metastatic)
  • Symptoms:
    • Weight loss
    • Night sweats
    • Fatigue
    • Swelling in one testicle
    • Urinary tract infection
    • Back pain
  • Treatments:
    • Chemotherapy
    • Immunotherapy
Frank B. stomach cancer
Frank B. stomach cancer
Frank B. stomach cancer
Frank B. stomach cancer
Frank B. stomach cancer
Frank B. stomach cancer
Frank B. stomach cancer

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.



Hi. I’m Frank

I was diagnosed with stage 4 gastric [stomach] cancer in March 2024, and I live in Georgia. I work in software development.

Generally, I have been pretty healthy. I did have one major health issue about three years ago: I had a benign brain tumor, and that was removed. 

Interestingly, because of that experience, when I started having these odd symptoms, I thought it could be something serious. If I hadn’t gone through that before, I might not have thought anything of it.

My early stomach cancer symptoms and initial concerns

Before I started having some serious symptoms, I was losing weight, experiencing night sweats, and feeling very fatigued. I also had an unusual symptom: swelling in one testicle. At first, I thought it could have been an infection. I also had a urinary tract infection (UTI), which was very unusual for me as I had never had a UTI before. 

So I went to a walk-in clinic. They gave me antibiotics, which cleared out the UTI. About a month later, I started having swelling again, which concerned me. I scheduled an appointment with a urologist at that point.

The swelling and back pain started around the same time. The back pain was persistent. I started experiencing it during spinning class, so at first I thought it was from the bike. I kept adjusting the height and position at the gym, but the pain wouldn’t go away. It was a dull, persistent pain, not severe enough to keep me from walking, but enough to alarm me. The combination of back pain and testicle swelling made me wonder if it could be testicular cancer. Those were the two main symptoms.

I initially had the UTI in January and went to the walk-in clinic, where I got antibiotics. I still don’t know if these symptoms were related. Then, I started having swelling and back pain in March. Between developing those symptoms and seeing a urologist was probably a few days. I was initially diagnosed with testicular cancer. The time between misdiagnosis and the correct diagnosis was about another two months.

Misdiagnosis and getting a second opinion

When I went to the urologist, he sent me for a CT scan because they noticed some enlarged lymph nodes throughout my body. There was concern that it might be lymphoma. They performed a biopsy at a community hospital and diagnosed me with testicular cancer. 

After doing research, especially on social media, I was advised to get a second opinion to ensure the treatment was appropriate. So I went to a research university, where they were skeptical of the diagnosis and decided to do another biopsy at a different site. They disagreed with the original diagnosis. They identified it as metastatic carcinoma of unknown primary, meaning they didn’t know where it originated, but it was stage four.

That was frustrating because testicular cancer generally has a very high cure rate. I was told I would undergo treatment for six months and that would be it. But when diagnosed with metastatic cancer of unknown primary, I was told it was likely more about palliative care. That was a big letdown. 

From then on, it was about getting more opinions to pinpoint the origin, and eventually, they determined it started in my stomach.

The correct diagnosis of EBV-positive stage 4 stomach cancer, and my emotional reaction to it

I got my diagnosis of gastric [stomach] cancer at the end of May. In between that and my testicular cancer misdiagnosis, I was put on chemotherapy for testicular cancer before the correct diagnosis was made.

To be honest, when I first received the diagnosis, I freaked out when they said it might be lymphoma; I looked up a lot about lymphoma. Then they told me it was testicular cancer, which was another shock. 

After a series of tests, including next-generation sequencing, I was finally diagnosed with gastric cancer. By then, I was numb because I was tired, but also relieved to finally get a concrete diagnosis.

My wife went to all my appointments with me. We traveled from Georgia to Indiana, New York, and Tennessee; everywhere, hoping someone would offer a better answer.

EBV, or Epstein-Barr virus, is a subset of gastric adenocarcinoma. There are maybe four subsets; mine was the one caused by Epstein-Barr, which happens in about 10% of cases. When I got the gastric cancer diagnosis, next-generation sequencing was done to see if I qualified for immunotherapy. That sequencing discovered the cancer may have been caused by a virus, prompting further tests for Epstein-Barr, which came back positive.

My “New Normal:” work, fatigue, and daily life changes

Right now, I’m on an oral chemotherapy pill that causes hand-foot syndrome, making my hands and feet very sensitive. My new normal involves using lotion and moisturizers throughout the day and sleeping with gloves on. It’s uncomfortable. Wearing gloves during the day is manageable in cold weather, but it’s uncomfortable in summer. It’s an adjustment, and I’ve become very high-maintenance.

I still work as a software developer, but I don’t have the mental capacity I had before, probably due to the treatments and the resulting mental fog and fatigue. When I began treatment, it was every two weeks, then every three weeks, now monthly. 

Treatments leave me tired for a few days, but I still go to work. AI tools like ChatGPT and Gemini have been helpful, especially with things I now forget. 

I still go out, but less often. I used to love the gym, but now worry about getting sick, so I’m setting up a home gym to stay active without the risk. It’s a little more isolating.

Self-advocacy and navigating the medical system

Maybe it was a silver lining, but having a benign brain tumor before made me determined not to just accept a diagnosis without seeking second opinions. When I had cancer, I didn’t want to let myself just accept what I was told. If three doctors gave the same answer, that was reassuring, but if they disagreed, more opinions were helpful. 

I did get some pushback. My original oncologist from the community hospital pushed back when I looked for more opinions, insisting others would say the same. It turned out they didn’t. 

I believe it was worth advocating for myself; I don’t know what would have happened if I’d just gone along with the initial diagnosis and treatment.

Sources of support and maintaining perspective

What keeps me grounded are my wife and my dog. 

The dog has helped a lot; I got him last year after my diagnosis to motivate me to stay active. When my feet hurt from the oral pill, the dog still wants me to walk or play with him; he doesn’t know I’m sick, which is nice. It helps not to always be seen as a patient.

My wife helps by checking in on how I’m doing, and she’s had her own health issues, so she’s compassionate and more alert to changes in me, often more than I am. It helps having someone else looking out for me because I might get used to gradual changes and not notice them anymore.

When I started losing hearing in my left ear, I didn’t think much of it, but my wife made an appointment for me. This led to the diagnosis of my brain tumor. Similarly, when I had symptoms of cancer, even after my experience with the tumor, she pushed me to go to the doctor. I didn’t resist this time because she’d been right before.

Survivorship and giving back

Honestly, I’m still figuring out what survivorship means to me. 

I’m more involved with the cancer community, especially groups for men with cancer, since many men don’t talk about their experiences. 

Survivorship means trying to make things a little less overwhelming for someone else going through something similar. That’s what I spend most of my time on now outside of work.

My sense of purpose has shifted. When you’re healthy, you plan for the future, vacations, and retirement. Now, being involved in the community helps me think beyond myself and helps others. Alleviating the burden, even in small ways, feels meaningful. Helping others helps me too.

Advice to others facing a similar diagnosis

I’m very involved with an organization supporting men with cancer. Women are generally more outspoken and seek support, which is why most support groups are female-oriented. Men, on the other hand, tend to isolate and bury their feelings. 

My advice is not to spend too long in isolation. It’s okay to feel scared or isolated at first, but the longer you stay there, the harder it is to get out. Let other people help; people want to help, so let them.

The most common issue for men facing cancer is the cultural expectation to be strong and the provider. If they can’t work and provide for their family, it feels like their manhood is being taken away. When I lost my hair, I didn’t really care except for being cold all the time. At first, not working and having family care for me felt strange, but it’s okay to be vulnerable for a while.

Lessons I’ve learned

I wish I’d been more sympathetic to people’s invisible struggles, like cancer. The longer I’ve been involved, the more I realize how many people are affected. 

Practically, I wish I’d known more about health insurance, disability, and related logistics. Before, I just picked whatever during open enrollment at work, but now I realize how important those choices can be.

I do have family and friends supporting me. I try to spend more time with them now and not postpone things. Previously, I was more career-oriented and would skip social events for work. Now, I prioritize trips or time with friends, realizing that those priorities have shifted.

One thing that’s changed: I used to get frustrated in traffic, but now it doesn’t bother me. After spending so many hours at the infusion center, waiting in the car just means I can listen to music or relax.

As for what I’d tell my past self. The main thing is about panic. Telling someone to “calm down” doesn’t work. The more I go through this, the less panic I feel. My advice to myself would be to deal with things as they come instead of trying to foresee everything that might happen in the future. Looking up survival statistics just causes anxiety, but everyone’s situation is unique. Deal with things as they come.

Looking forward: my hope for the future

What I’m looking for most is more treatment options. Stomach cancer isn’t very common in the United States, so there aren’t many options. I hope for more research and more ways to manage this as a chronic condition, something I can live with, even if it means dealing with side effects.

I’ve talked to my doctors about clinical trials. Since I’m still on my first line of treatment and it’s working, my oncologist keeps clinical trials as a backup plan for when they might be needed. I have friends who have done clinical trials, and I’ve learned a lot from their experiences.


Frank B. stomach cancer
Thank you for sharing your story, Frank!

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More Stomach Cancer Stories


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Treatments: Chemotherapy, immunotherapy
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Treatments: Chemotherapy (HIPEC, including through a clinical trial), surgeries (gastrectomy, splenectomy, cholecystectomy, oophorectomy, appendectomy, omentectomy, peritonectomy, lymphadenectomy), immunotherapy
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Niccole B. stomach cancer

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



Symptoms: Stomach pain after having alcoholic drinks, eating less, slight weight loss, acid reflux, vomiting, getting full fast

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Frank B. stomach cancer

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Treatments: Chemotherapy, immunotherapy
...
Luwen S. cardia cancer

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Arelly R. stomach cancer

Arelly R., Stomach Cancer (Gastric Adenocarcinoma), Stage 4 (Metastatic)



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