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Stage 4 Cardia Cancer Transformed Luwen’s Life and Perspective

Luwen S. cardia cancer

Stage 4 Cardia Cancer Transformed Luwen’s Life and Perspective

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

Interviewed by: Keshia Rice
Edited by: Chris Sanchez

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

Luwen S. cardia cancer

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

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

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

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

  • Advocacy matters: being persistent to get the correct diagnosis is vital, especially when symptoms are minimized
  • You are the real expert on symptoms; trust yourself when you know something’s wrong
  • Major illness like cancer often forces patients to reconsider what matters most in life
  • Support networks such as family, friends, and therapists, help patients endure treatment and uncertainty
  • Transformation is possible: Luwen’s priorities shifted toward peace, self-care, and authentic living
  • Name: Luwen S.
  • Diagnosis:
    • Cardia Cancer
  • Age at Diagnosis:
    • 25
  • Staging:
    • Stage 4
  • Symptoms:
    • Backaches
    • Heartburn and acid reflux resulting in vomiting bile
    • Fainting spell after eating
    • Fatigue
    • Inability to swallow
  • Treatments:
    • Chemotherapy
    • Immunotherapy
    • Surgeries: esophagectomy, partial gastrectomy
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia 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.

Transcript of Luwen’s Interview
  1. My name is Luwen
  2. My initial symptoms
  3. Navigating the French healthcare system
  4. I processed everything while I was alone
  5. My body broke down, and I doubted myself
  6. My persistence led to second opinions and the key endoscopy
  7. My treatment experience
  8. I had surgery, and how I recovered from it
  9. Moving forward, and my new priorities
  10. How I coped with the hardest moments
  11. Lessons for young cancer patients
  12. Healing, recovery, and looking forward
  13. My final reflections

My name is Luwen

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

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

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

My initial symptoms

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

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

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

Navigating the French healthcare system

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

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

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

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

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

I processed everything while I was alone

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

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

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

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

My body broke down, and I doubted myself

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

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

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

My persistence led to second opinions and the key endoscopy

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

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

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

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

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

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

My treatment experience

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

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

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

I had surgery, and how I recovered from it

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

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

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

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

Moving forward, and my new priorities

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

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

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

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

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

How I coped with the hardest moments

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

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

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

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

Lessons for young cancer patients

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

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

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

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

Healing, recovery, and looking forward

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

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

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

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

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

My final reflections

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

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

Hopefully, I will never have cancer again.

Luwen S. cardia cancer
Thank you for sharing your story, Luwen!

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Antibody-drug conjugate Cancers Chemotherapy Chemotherapy port installation Gastrectomy Gastric Adenocarcinoma Immunotherapy Metastatic Metastatic Patient Stories Stomach Cancer Surgery Targeted Therapy Treatments

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

Arelly R. stomach cancer

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.

Transcript of Arelly’s Interview
  1. My name is Arelly
  2. First red flags during my pregnancy and postpartum
  3. Symptoms that were overlooked or misattributed
  4. Feeling dismissed by doctors, and taking the H. pylori test
  5. Why early screening and advocacy matter so much
  6. Advocating for myself in the emergency room
  7. My husband’s support and documenting the tumor
  8. Hearing “cancer” while pregnant
  9. How I knew something was wrong before I got diagnosed
  10. Motherhood, hospitalization, and protecting my kids emotionally
  11. How cancer affected my identity and personality
  12. Quality of life, treatment cycles, and everyday joys
  13. Hair loss, body changes, and rediscovering myself
  14. Holding on to small happy moments
  15. Finding stomach cancer community and online support
  16. Time, identity, and redefining what matters
  17. My final message: forgiveness, kindness, and changing the world

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

Dawn C. stomach cancer

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.

Transcript of Dawn’s Interview
  1. Hi. My name is Dawn
  2. My initial symptoms
  3. I had an emergency c-section and got admitted
  4. When I first heard the words “gastric adenocarcinoma”
  5. Parenting through cancer: feelings of loss
  6. Hereditary Diffuse Gastric Cancer: Learning about genetics
  7. My treatment: chemotherapy, HIPEC, and surgery
  8. The importance of self-advocacy in cancer care
  9. I had to find a new normal after surgery
  10. My family has really supported me
  11. Messages for my kids, and for myself
  12. My advice for other patients

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
Thank you for sharing your story, Dawn!

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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 P. bile duct cancer

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.

Transcript of Alicia’s Interview
  1. Hi. My name is Alicia
  2. How I discovered that I have cancer
  3. Parenting with cancer: the emotions and challenges I faced as a new mom
  4. How I managed my fears and planned for the future
  5. From my ER visit to my diagnosis
  6. Learning about an uncommon cancer
  7. My day-to-day life with cancer and how I maintain normalcy
  8. Growing Kindness: how we spread joy through flowers
  9. How my life has changed after my diagnosis
  10. My body image and identity
  11. The physical and emotional impact of chemotherapy
  12. How I’ve advocated for myself
  13. Clinical trials and research: considering new treatments
  14. Understanding palliative care
  15. How I keep going
  16. What I want others to know

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
Thank you for sharing your story, Alicia!

Inspired by Alicia's story?

Share your story, too!

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

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

Kayleigh G-P. colorectal cancer

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.

Transcript of Kayleigh’s Interview
  1. Hi, I'm Kayleigh
  2. My first colorectal cancer symptoms
  3. I persisted in the face of diagnostic delays
  4. I took the initiative as a patient
  5. Finally getting a colonoscopy and an initial diagnosis
  6. My treatment approach and plan
  7. I’m coping with side effects and protecting my mental health
  8. Key lessons I’ve learned
  9. Self-advocacy and what keeps me going
  10. My advice for others

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
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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

Frank B. 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.

Transcript of Frank’s Interview
  1. Hi. I'm Frank
  2. My early stomach cancer symptoms and initial concerns
  3. Misdiagnosis and getting a second opinion
  4. The correct diagnosis of EBV-positive stage 4 stomach cancer, and my emotional reaction to it
  5. My “New Normal:” work, fatigue, and daily life changes
  6. Self-advocacy and navigating the medical system
  7. Sources of support and maintaining perspective
  8. Survivorship and giving back
  9. Advice to others facing a similar diagnosis
  10. Lessons I’ve learned
  11. Looking forward: my hope for the future

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

Andy G. stomach cancer

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



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

Treatments: Chemotherapy, immunotherapy
...
Alyssa B. feature profile

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



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

Brittany D., Stomach Cancer, Stage T1b



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

Treatments: Surgeries (subtotal gastrectomy, D1 lymphadenectomy, gastric bypass)
...
Camilla C. stage 4 stomach cancer

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



Symptoms: Issues swallowing, swollen gland in the neck

Treatments: Palliative chemotherapy was offered but declined, nutritional changes to support her comfort and energy, meditation and mindfulness practices, self-directed healing methods

...
Emily D. stage 4 stomach cancer

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



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

Treatments: Chemotherapy, immunotherapy

...
Alyssa B. hospice update

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



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

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

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

Valerie V. thyroid cancer

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

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

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

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

Valerie V. thyroid cancer

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

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

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

  • Early, persistent symptoms such as bruising and cold intolerance should always prompt a thorough investigation for thyroid cancer and similar conditions
  • Advocacy within healthcare, whether through using medical connections or self-advocacy, can accelerate diagnosis and timely treatment
  • Emotional and family support underpin resilience through the challenges of advanced cancer treatment
  • Lifelong management (such as thyroid hormone suppression therapy) is common after total thyroidectomy and can be a major adjustment
  • Healing is not linear, but finding moments of gratitude and hope is always possible, regardless of circumstance
  • Name: Valerie V.
  • Age at Diagnosis:
    • 29
  • Diagnosis:
    • Thyroid Cancer (Papillary Thyroid Carcinoma)
  • Staging:
    • Stage 4
  • Warning Signs & Symptoms:
    • Bruising
    • Extreme fatigue
    • Cold intolerance
    • Weight loss
  • Treatments:
    • Surgeries: total thyroidectomy, neck dissection, lymphadenectomy
    • Radiation therapy: radioactive iodine therapy
    • Hormone therapy: thyroid hormone suppression therapy
Valerie V. thyroid cancer
Valerie V. thyroid cancer
Valerie V. thyroid cancer
Valerie V. thyroid cancer
Valerie V. thyroid cancer
Valerie V. thyroid cancer
Valerie 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.

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

My name is Valerie

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

Family, nursing, and what matters most to me

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

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

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

My early warning signs

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

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

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

Losing my son, and the car accident that changed everything

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

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

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

The scan revealed something suspicious about my thyroid

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

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

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

Hearing “You have thyroid cancer” at work

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My high-risk neck dissection surgery and radioactive iodine

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Grieving our son, infertility, and being forced to wait

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

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

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

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

What survivorship means to me now

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

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

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

My message to others living with cancer

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

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

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

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Categories
CAR T-Cell Therapy Chemotherapy Diffuse Large B-Cell (DLBCL) Metastatic Non-Hodgkin Lymphoma Patient Stories Radiation Therapy Treatments

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

Ashley P. stage 4 DLBCL

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

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

Interviewed by: Keshia Rice
Edited by: Katrina Villareal

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

Ashley P. stage 4 DLBCL

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

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

Key Story Takeaways:

  • Trust and advocate for your own body; patients know their symptoms best and should persist until they are heard.
  • Emotional struggles, like fear, guilt, and anger, are often invisible but just as challenging as the physical aspects of disease.
  • Family support and faith provided critical anchors for Ashley, helping her endure even the most difficult days.
  • DLBCL can affect patients of any age, and younger individuals may face unique challenges in being taken seriously by the medical team.
  • New therapies, including CAR T-cell therapy and bispecific antibodies, offer hope even in refractory cases.
  • Advocacy and self-acceptance are vital; patients experiencing life-altering conditions deserve compassionate care and respect for their experience.
  • Name: Ashley P.
  • Age at Diagnosis:
    • 29
  • Diagnosis:
    • Diffuse Large B-Cell Lymphoma (DLBCL)
  • Staging:
    • Stage 4
  • Symptoms:
    • Feeling like holding breath when bending down or picking up objects from the floor
    • Waking abruptly at night, feeling “off”
    • One episode of fainting (syncope)
    • Presence of a large mass in the breast
  • Treatments:
    • Chemotherapy
    • Bridge therapy of chemotherapy and radiation
    • CAR T-cell therapy
Ashley P. stage 4 DLBCL
Genmab-AbbVie logo

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

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

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

Table of Contents
  1. Facing the Unexpected: Early Signs and Diagnosis
  2. A Young Mother and a Rare Diagnosis
  3. The Unseen Struggle: Emotions Behind the Experience
  4. CAR T-cell Therapy and Next Steps
  5. Advocacy and Self-Empowerment: Lessons Learned
  6. Advice for Others: Faith, Family, and Resilience
  7. Moving Forward: Transformation and Community

I didn’t realize how big the lump was. It was literally the size of a baseball. But it didn’t raise any red flags.

Ashley P., Stage 4 DLBCL Patient

Facing the Unexpected: Early Signs and Diagnosis

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

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

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

Ashley P. stage 4 DLBCL
Ashley P. stage 4 DLBCL

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

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

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

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

We have more FDA-approved medicines for lymphoma than for any other cancer… It’s awesome because it means we have more options for patients

Dr. Joshua Brody, Hematologist-Oncologist

A Young Mother and a Rare Diagnosis

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

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

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

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

Ashley P. stage 4 DLBCL
Dr. Joshua Brody

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

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

Despite assurances from doctors, treatment was daunting.

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

The world doesn’t stop… You still have to show up and be a mom and a wife… and that is such a hard challenge.

Ashley P., Stage 4 DLBCL Patient

The Unseen Struggle: Emotions Behind the Experience

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

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

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

Ashley P. stage 4 DLBCL
Ashley P. stage 4 DLBCL

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

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

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

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

Ashley P., Stage 4 DLBCL Patient

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

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

Ashley P. stage 4 DLBCL

CAR T-cell Therapy and Next Steps

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

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

CAR T-cell therapy came with new challenges.

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

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

Dr. Amir Steinberg, Hematologist-Oncologist

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

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

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

Dr. Amir Steinberg
Ashley P. stage 4 DLBCL

Advocacy and Self-Empowerment: Lessons Learned

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

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

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

Ashley P., Stage 4 DLBCL Patient

Advice for Others: Faith, Family, and Resilience

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

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

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

Moving Forward: Transformation and Community

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

Ashley P. stage 4 DLBCL
Ashley P. stage 4 DLBCL
Thank you for sharing your story, Ashley!

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Looking to the Future: Treatment Paths for Relapsed/Refractory DLBCL
Hosted by The Patient Story Team | 1h 9m 30s
Hear Dr. Joshua Brody and Dr. Amir Steinberg discuss new treatments for relapsed/refractory DLBCL and how academic–community collaboration helps patients access the best care. Moderated by DLBCL Advocate Stephanie Chuang.
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Thank you to Genmab and AbbVie for their support of our independent patient education program. The Patient Story retains full editorial control over all content.

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

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

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Categories
BRCA1 Chemotherapy Cholecystectomy Gastrectomy HIPEC (Hyperthermic Intraperitoneal Chemotherapy) Hysterectomy Metastatic PARP Inhibitor Partial colectomy Partial gastrectomy Partial hepatectomy Patient Stories Radiation Therapy Splenectomy Stomach Cancer Surgery Targeted radiation therapy Targeted Therapy Treatments

Niccole is Redefining Life After Stage 4 Stomach Cancer

Niccole B. stomach cancer

Niccole is Redefining Life After an Stage 4 Stomach Cancer

Niccole is a stage 4 stomach cancer survivor who embraced traveling the world after her diagnosed in 2021. After experiencing stomach pain, acid reflux and vomiting, she went to the doctor for testing that revealed her cancer. Ultimately, Niccole had 80% of her stomach removed, changing the way she lives each day.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Niccole’s tumor was blocking her stomach’s pyloric sphincter, and stomach cancer surgery meant that she might lose her stomach altogether. She initially underwent a chemotherapy regimen that worked by shrinking her tumor before surgery. Through biomarker testing, Niccole also learned that she carries the BRCA1 mutation, inherited from her mother’s side, linking her diagnosis to a known familial risk. 

Niccole B. stomach cancer

Niccole underwent surgery to remove her gallbladder and 80 percent of her stomach. Life afterward required a complete lifestyle change, requiring her to eat much smaller meals.

Two years later, Niccole’s cancer metastasized in her ovaries, liver, spleen, and peritoneum. She faced another uphill climb through HIPEC treatment and further surgery. Now on ongoing immunotherapy and ctDNA monitoring, she continues to live fully in the present, knowing that time is uncertain. Her story embodies acceptance, grit, and the power of patient advocacy. Through Debbie’s Dream Foundation and Hope for Stomach Cancer, Niccole mentors others navigating the unknown. She proves that life after a life-altering diagnosis can still be full of purpose.

Niccole’s story delves into:

  • Small, early symptoms can signal deeper issues. Listening to your body can save your life
  • Treatments may eradicate disease, but often transform how patients live afterward
  • Advocacy and patient communities provide essential emotional support and empowerment
  • True strength is not found in control but in embracing uncertainty with purpose
  • Niccole’s transformation unfolded not just through healing, but through redefining what it means to truly live
  • Name: Niccole B.
  • Age at Diagnosis:
    • 37
  • Diagnosis:
    • Stomach Cancer
  • Staging:
    • Stage 4
  • Mutation:
    • BRCA1
  • Symptoms:
    • Stomach pain after having alcoholic drinks
    • Eating less
    • Slight weight loss
    • Acid reflux
    • Vomiting
    • Getting full fast
  • Treatments:
    • Chemotherapy: hyperthermic intraperitoneal chemotherapy (HIPEC), open HIPEC with cytoreductive surgery
    • Surgeries: partial gastrectomy, cholecystectomy, splenectomy, partial colectomy, partial hepatectomy
    • Radiation therapy: targeted radiation therapy
    • Immunotherapy
    • Targeted therapy: PARP inhibitor
Niccole B. stomach cancer
Niccole B. stomach cancer
Niccole B. stomach cancer
Niccole B. stomach cancer
Niccole B. stomach cancer
Niccole B. stomach cancer
Niccole B. stomach cancer
Niccole B. stomach cancer
Niccole B. stomach cancer
Niccole B. stomach cancer
Niccole B. stomach cancer
Niccole 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.

Transcript of Niccole’s Interview
  1. My name is Niccole
  2. I had a quiet travel year after a cancer recurrence and HIPEC treatment
  3. My early symptoms, and the first signs that something was wrong
  4. I had worsening symptoms, including acid reflux
  5. My initial GI visit and missed testing opportunities
  6. I had an alarming ultrasound and was urged to go to the ER
  7. Rapid escalation: scope, CT, and oncology referral
  8. The phone call, my panic attack, and hearing “oncologist”
  9. Involving my family and getting a second opinion
  10. Understanding the tumor location and the possible removal of my stomach
  11. Facing life without a stomach, and my initial treatment plan
  12. Tumor disappearance, major surgery, and creating a new stomach pouch
  13. Completing chemo and radiation, and my first declaration of NED
  14. A suspicious PET scan and surprise hysterectomy findings
  15. HIPEC and major cytoreductive surgery
  16. Ongoing immunotherapy and close surveillance
  17. I’ve adapted to life without a stomach
  18. I live with the fear of recurrence, but I’ve chosen joy
  19. Finding strength and support through family, friends, and stomach cancer communities

My name is Niccole

I am a stage 4 stomach cancer survivor. I was diagnosed in August of 2021 at the age of 37, and I live in Arizona.

So, I am huge into travelling. Ever since my diagnosis, we have decided that we are going to travel the world because we do not know who is going to make it to what age. I am a realtor here in the Valley, and I love what I do. I do residential real estate. I work with buyers and sellers out here in the Phoenix metro area. I have two dogs. They are my pride and joy. I love them. No kids, so they are my fur babies. 

Originally, the first trip that we ended up doing was on my bucket list. After I finished my chemo in 2022, we booked a cruise. We did a seven-day cruise to Alaska in May of 2022, and it was amazing. It was beautiful. We want to go back, and we want to do a land and sea cruise.

More recently, last year, we did a Mediterranean cruise. We started in Barcelona. We spent three days in Barcelona and then travelled the whole little coastal area. We went to Pisa and Florence, which were amazing. We ended in Rome, and we spent an additional three days in Rome. I think we were out there for about sixteen days. We have been to Ireland. We went to Lisbon, Portugal. We have been to the Canary Islands, so we have been all over the place. We still have a bunch of stuff to do on our bucket list, but those are some of the most recent trips.

Just getting to learn about the culture is why travel means so much to me. I really think it is important that we get outside of the United States because I really think it opens up our eyes. We really like seeing the churches and the history and just getting to understand where we came from, honestly. It is a lot of fun to see the different sights. There are so many cool things out there that are old.

Ireland was pretty cool. It was very, very wet. It rained a lot. We went in October of 2023, I think. We did a cruise. We are big into cruising, so we have done a lot of different cruises. It allows you to see multiple areas versus going to one location and then trying to figure out your travel and your stay and all that kind of stuff. The cruise line is pretty much your food and driver, and the place you lay your head.

I had a quiet travel year after a cancer recurrence and HIPEC treatment

This year has been quiet because I got busy with work, and then with the recurrence, I had surgery. We are coming up on a year in November. I had surgery in November because I did HIPEC with CRS, and that recovery was really, really rough. It was not until probably March that I was really back into—I do not even want to say normalcy, because I am still somewhat a little different—but I got more consistent with being able to do things and getting my energy back and all those types of things. So this year has been a little bit quieter on the travel front for us.

We have done a couple of things. We just got back from Holden Beach, North Carolina. But otherwise, it has been a soft travel year for us.

My early symptoms, and the first signs that something was wrong

At the beginning of 2021, none of the things that I had were really extremely “boom, in your face.” I was 37. I chalked up a lot of the things that I had going on to maybe stress with work, and just that, as we age, things happen.

We used to go and enjoy margaritas with the girlfriends. We would go out, and I would have a drink, and I would be in agonizing pain. I remember a couple of times we went out with some couples to have drinks. They were going to go out afterwards, after we did dinner and everything. They were going to go to another place, and I had to go home, because I was literally curled up in the fetal position because my gut felt so bad. So that was kind of the start of it.

I had lost a little bit of weight, but it was not significant. It was not a super extreme weight loss. I was struggling a little bit with getting full faster, and then it kind of progressed. That was probably all at the beginning of 2021, January, February time frame.

I had worsening symptoms, including acid reflux

Then things started progressing. Probably about the March-April time frame, I started to get a lot of acid reflux, and I had never experienced acid reflux before. It got to the point where I could not even lie down in my bed anymore. I would have to go sleep in our living room on the sofa, because the sofa was able to prop me up, so I was not lying down. If I lay down, I would wake up vomiting in my mouth.

I had started to take some over-the-counter medications. My family is all kind of in the medical field in one aspect or another. I had reached out to my uncle when I was having some of these problems and asked, “What can I take to calm some of this acid reflux and these intense symptoms? I am just feeling sick.” He advised me and helped me with some stuff, and I started taking some medication.

I am one of those people who reads the bottle and only takes it if I need it. That goes for pain medication and all that kind of stuff. I took it for 14 days, and it made me feel a little bit better. I thought, “Okay, this is great. I am feeling good.” The acid reflux had calmed down.

As soon as I came off of it, it got severely worse, to the point where if I ate anything by mouth, even drinking water, it made me vomit. It was making me so sick. The entire month of July 2021, I essentially spent on the sofa. I could not eat anything. We tried everything from crackers to chicken noodle soup, all of your grandmother’s secrets to help you feel better.

Of course, at the age that I was and with COVID going on, I had been healthy before all of this happened. I had no idea that I would be facing stomach cancer. So I did not have a built-up primary care physician or know where to turn. I was Googling and talking to people, and asking where I should go.

To get into anything then was insane because nobody was taking new patients. I finally got into a GI place.

My initial GI visit and missed testing opportunities

The woman I saw, her first plan for me was, “Okay, we are going to get you in for an endoscopy.” Nothing was leading up to that. We did not talk about H. pylori possibilities. We did not do a breath test. We did not do all these things.

She put me on pantoprazole. I have now learned, after the fact, that the first thing we should have done was test for these things, which I did end up coming back negative for—H. pylori and all that stuff. But I would have had to come off the pantoprazole, which was helping me with some of my acid reflux symptoms. I would have had to come off it for two weeks for them to actually even do the test.

The advice I had gotten from my family was, “Before we go to this extreme where they have to put you under to do the endoscopy, let us see what else we need to do first,” because that is a pretty extreme first step. So I ended up getting into a primary care office about a week after I went for this GI consultation, and that was even worse than my GI thing.

I had an alarming ultrasound and was urged to go to the ER

The only good thing the primary care provider did for me was to send me for an ultrasound of my stomach area. When I went in to get that done, the tech who did it asked, “When was the last time you ate?” I said, “I followed your directions. I have not eaten or drunk anything in the last 12 to however many hours. Why?” She said, “Because your stomach is full.”

She showed me the picture, and it was big and full. I was advised to go to the ER. I thought, “I am not going to go spend $1,000 at the ER when the estimate for doing this endoscopy was like seven or eight hundred bucks. I will just go back to the GI.”

It was a bit of a fight on that aspect, too, because the PCP was saying, “You need to go to the ER right now,” and was very insistent. I ended up going back and getting in with the GI. Instead of seeing one of the physician assistants, the GI actually called me to get me in almost immediately because he looked at my chart and the notes that the other provider had taken, and he got me in immediately.

Rapid escalation: scope, CT, and oncology referral

I went in, I think it was a Thursday, and met with him. The following week, he got me in for my scope. I think I went on a Wednesday for my scope. Friday, he had me in for a CT. The following Monday, he had me connected with his oncologist partner, who I still see today—my current oncologist.

I went in for my oncology consult and my surgical consult on Monday. By that following Thursday—so the same week—after my Monday consult, they had me in for a diagnostic laparoscopy and to place my port. This was all done before we even had my pathology back. We got my pathology back the same day that I met with my oncologist.

My oncologist called it without even having the pathology report back. He said, “You are either going to be a stage two or stage three, depending on what they find—how much it has gone into the stomach lining.” I ended up being a stage three when they went in and did the diagnostic laparoscopy.

The phone call, my panic attack, and hearing “oncologist”

Before I actually went in to meet with the oncologist, I received a phone call. I did not have any idea that it was going to be a cancer diagnosis. My GI doctor did not have the results yet, and he did not have the pathology. He said, “It could be cancer,” but there was no real discussion yet.

He wanted to fast-track me. I received a call from the oncologist’s office. I looked up what an oncologist was because I had no idea, and I literally almost died—or at least it felt like it. I looked it up, and, as I said, I had been struggling to eat. I had lost a bunch of weight.

I think I was at 109 pounds. I used to be about 130–135 pounds. When I started getting sick, I was about 120. By the time I actually got in and was diagnosed, I think I was at about 109 pounds, maybe 105. I cannot remember exactly now. I was not eating, and every time I ate, I was throwing up.

When I got that call, I had a panic attack. I literally had a panic attack to the point where I almost felt like I was going to black out. I could not move my hands. I was trying to text my boyfriend when I got this, and I was just really freaking out about it.

I am very blessed that I have some friends who live really close to me. Instead of me calling 911, I had a girlfriend who came over, and I had a couple of friends who came and visited with me and soothed me and calmed me down. It was a pretty freaky experience. It is not an easy diagnosis to get.

Involving my family and getting a second opinion

My second opinion was pretty much my uncle’s. When all of this started coming down the pipeline, I called him because he is essentially my dad—my dad is not in the picture. 

My uncle has a medical background. He is a retired pediatrician and did a lot of education and other things, so he was my go-to for all of this.

When I found out about this, I called him immediately, and he actually flew out here to be with me for my first appointments.

Understanding the tumor location and the possible removal of my stomach

It is interesting when I talk to different people. When I talk to my significant other, he remembers things a little differently, but we both remember how intense it was.

When we went and met with the surgeon—again, this was all before having the actual pathology report back—my stomach cancer was at the base of my stomach. It was covering my pyloric sphincter. That was why nothing was going through, and it was all coming back up. Nothing could pass into my small intestine. I was not passing bowel movements or doing any of those types of things. It was all coming back up as vomit.

When I met with the surgeon, we were sitting in his office, and he was showing me this diagram. He said, “Okay, I am going to have to cut out probably at least 50, if not more, percent of your stomach. This is where your tumor is. It is at the bottom of the stomach, and down here is where everything is supposed to come through. This is all being blocked off. I am going to have to get clear margins and come up higher to wherever I get clear. I may have to take your entire stomach.”

That was freaky in and of itself. I asked, “What if the chemo works?” We were now having a conversation about both. We would start with chemotherapy and then go into surgery if chemo shrank the tumor, because essentially the plan was: start with chemo, shrink the tumor, and then go in and do the stomach removal to whatever portion he needed to — 30, 40, 50, or even 100 percent of my stomach.

Facing life without a stomach, and my initial treatment plan

My biggest question was, “How am I going to live without a stomach?” It is one of your most needed organs for processing food and nutrition and all those types of things. There are definitely ways around that, because I am still here. But it was terrifying.

We did the surgeon consult with that fear of his taking my stomach out, and then we went and met with my oncologist. The process was to do four rounds of chemotherapy and then have an endoscopy to see how much the tumor had shrunk or reduced in size. Then we would make the plan for getting me in for surgery.

I am a BRCA1-positive. I have BRCA1, which is the gene mutation that usually puts you at a predisposition for either ovarian or breast cancer. I actually do have breast cancer in my family. My mom passed away from breast cancer when I was seven years old. Her mom passed away about a year after her. I have multiple family members on either side who have had breast cancer.

Honestly, I thought that was going to be my cancer. It turned out that BRCA actually caused my stomach cancer.

Tumor disappearance, major surgery, and creating a new stomach pouch

My tumor actually shrank and was gone by the time we did my endoscopy before my surgery in November. I am coming up on four years celebrating my 80 percent removal of my stomach and my gallbladder. On November 4th of this year, it will be four years.

When we did my endoscopy before my surgery, my tumor was completely gone. I was very blessed that my response to chemotherapy was pretty much 100 percent. The surgeon went in and did an 80 percent removal of my stomach. They brought my small intestine up and attached it to my esophagus to whatever is remaining of my stomach up there. Then he created a little pouch for me. I no longer have a full stomach; I have a little pouch that they made with a hole in it that goes down into my small intestine.

He also removed my gallbladder at that time, too. There was no metastasis there, but they say that the gallbladder tends to become an issue with some of the things we have going on with this specific cancer. I am actually very grateful he took it.

Completing chemo and radiation, and my first declaration of NED

We did four rounds of chemotherapy, the surgery, and then I ended up having 25 rounds of targeted radiation. Then I had four more rounds of chemo. It was a process.

I got my first NED—no evidence of disease—in March of 2022. We continued on a PARP inhibitor that is supposed to target the mutation, my genetic mutation. We had me on that for about a year. We continued with scans to make sure nothing was showing up.

A suspicious PET scan and surprise hysterectomy findings

I had a PET scan that came back looking really weird in, I think, August or September of 2023. My oncologist was on me to get my ovaries removed because the PET scan was showing some weird stuff down by my ovarian area. They were uncertain exactly what it was or what it could be.

I finally decided to do a total hysterectomy. In April of 2024, I got scheduled and went in for my total hysterectomy. That surgery was estimated to be an hour and a half, but ended up taking four hours. He brought in a second surgeon because I had metastases to my ovaries, my tubes, and my peritoneal lining. It was on my spleen and my liver. We also found out there was some in my small bowel.

Again, I have been very blessed with my team of doctors. He could have easily said, “I am not touching this,” with the amount of metastases he found. Instead, he brought in somebody else to help, and they removed everything they could within the scope of the hysterectomy.

We proceeded to start me on chemotherapy again, just on a different drug. I asked my oncologist, because it went into my peritoneal area, if we were going to do something called HIPEC.

HIPEC and major cytoreductive surgery

We found the recurrence, and we decided to get me back on the old chemo drug. I talked to my oncologist about doing HIPEC. He referred me to my HIPEC surgeon, who was amazing. We got me qualified.

I think I had five or six treatments of that one particular chemo drug. We ended up having to take me off one of those drugs because I was having some really bad allergic reactions to it. That kind of chemotherapy is intense. It really affects your body.

I met with my HIPEC surgeon in, I think, July of last year and went in to get my PCI score done to make sure that I could qualify for HIPEC, which I did. I think I ended up with a score of 10 or 11. I qualified for HIPEC.

The first HIPEC that we scheduled was at the end of September last year. It was done laparoscopically. They did three incisions, one on either side of my abdomen and one in the middle so they could have the camera in there. Then, five weeks later, they had me come back and do open surgery. He did open HIPEC with CRS, cytoreductive surgery. He went in and removed all of the tumors that he could see or cancerous areas that were questionable.

He also did a splenectomy. They removed my spleen, two feet of my small intestine, the spot that was on my liver, and anything else they could find. That was my big surgery back in November last year.

Ongoing immunotherapy and close surveillance

We have had me on immunotherapy since my recurrence in April of last year. We are also doing a ctDNA blood test called Signatera. Unfortunately, my last Signatera test just came back showing positive. We do not know if it is a false positive or not.

Right now, the plan is to have me on immunotherapy for two years, starting last April when we started it. I still have probably another 6 to 8 months, potentially more, depending on how my body holds up to it. Currently, I go every six weeks for immunotherapy.

We do all the scans. I had a PET scan done in June. We just did a CT scan. I am going for another endoscopy and colonoscopy here in the next month or so. We are on surveillance at this point, along with the immunotherapy.

They cannot really do anything with any of the positive tests until they see something again. That is kind of where we are sitting. Every three months, I am doing a scan. Unfortunately, none of my stuff shows up on my scans. A CT scan is just protocol with this, but I do not ever expect to see anything.

If my next Signatera test comes back positive, the plan would be to go in for another diagnostic lap to see if they can find what or where the potential cause of the DNA showing cancer circulating in my bloodstream is.

I’ve adapted to life without a stomach

The biggest challenge has been the lifestyle change. Losing your stomach is huge. When they first did my stomach removal, there were a lot of things I could not eat. You have to be very cautious and conscientious about what you are putting into your body, which, I mean, we all should be, but especially after this kind of surgery.

When I first had my surgery, I would go into severe dumping if I ate certain things. The first six to eight weeks after my stomach removal, I could not eat any bread products or pastas or those types of things. I could not have coffee because it would just put me in the bathroom.

Now, four years out, I have gotten used to my new way of eating and drinking. I have to have a plan. I feel like I am always continually thinking about eating because I have a very small pouch. I do not have a stomach, so I have to continually eat throughout the day. If I forget, you will know, because “hangry” is definitely a thing. My boyfriend will say, “When was the last time you ate?” and I am like, “Oh, was I that mean? I am so sorry.”

I live with the fear of recurrence, but I’ve chosen joy

It is always at the back of my mind: When is the next recurrence going to happen? I will be completely honest. I live my life, and I live my life to the fullest, but it is always going to be there.

When people ask me, and we talk about it, and I say, “Oh yeah, I have been NED since last year,” they say, “Oh, congratulations, that is great.” And it is. I will live my life to the fullest, and I will do everything every day. I tell people that we could all walk out tomorrow and get hit by a car, to be honest. 

But I feel like I live my life differently because I know that I may not make it another twenty years.

Finding strength and support through family, friends, and stomach cancer communities

I am much more on Facebook than I ever was before this diagnosis, but I had the same question as a lot of people: I had no idea. Stomach cancer is not a very well-known or talked-about cancer. It was actually quite difficult for me in the beginning to find people who were like me.

My family was all very helpful. My cousin’s wife recommended that I get on Facebook and look at some of the different groups that were specific to stomach cancer. I ended up connecting with a couple of different organizations.

One that I am really involved with is called Debbie’s Dream Foundation: Curing Stomach Cancer. They are based out of Florida. We do a lot together. I do mentorship with them because they offer a mentorship program. If people want or need help and want to know about treatment and different things, I am really active with them for that, and for advocacy.

We go to Washington, D.C. every year to talk to our legislators to make sure that they continue funding stomach cancer research and allocate funds to our specific disease. Stomach cancer is one of the top five deadliest cancers, yet it receives a very minimal amount of funding for research.

We go every year for advocacy with them. I am also part of a smaller group called Hope for Stomach Cancer. They also do a lot of education—so does Debbie’s Dream—with different symposiums and things. Hope for Stomach Cancer also does the same thing.

We call each other family, to be completely honest. Next month, I am going out [to Los Angeles] because November is Stomach Cancer Awareness Month, and Hope for Stomach Cancer is doing a patient summit in LA. I am going to see some of my “family” and get some good knowledge on what is going on in the stomach cancer world.

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

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Categories
Chemotherapy Colorectal fertility preservation Immunotherapy Liver Resection Metastatic Monoclonal antibody drug Ostomy Patient Stories Surgery Targeted Therapy Treatments Tumor excision

Life Changed Overnight: Rylie’s Experience with Stage 4 Colorectal Cancer

Rylie T. colon cancer

Life Changed Overnight: Rylie’s Experience with Stage 4 Colorectal Cancer

Rylie is someone whose life has always revolved around her family, home projects, and being outdoors. She enjoys gardening with her mom, cycling with her fiancé, and caring for her chickens and dogs. In April 2025, the joys of that routine were interrupted when persistent abdominal pain and bloating kept sending her back to the ER, where she was told it was constipation. Trusting her intuition and refusing to ignore what her body was telling her, she pushed for answers. That persistence led to the discovery of a mass and a diagnosis of stage 4 colorectal cancer.

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

Rylie had to have emergency surgery. Her surgical treatment was extensive, involving the removal of a tumor in her colon, a liver mass, and parts of her small intestine. She also received an ostomy, which she had reversed.

Rylie T. colon cancer

Her cancer treatment involved chemotherapy, immunotherapy, and targeted therapy, but not before Rylie underwent fertility preservation, a major decision made quickly after surgery. Her care team involved multiple institutions, and she and her family sought out the best specialists for her treatment.

Throughout her experience, Rylie relied deeply on her faith and the support of her family, especially her mother, who she describes as her role model. She openly shares the emotional challenges of postponing her wedding plans and adjusting to physical changes, but remains grateful for the unwavering support of her fiancé and family. 

Rylie encourages patients to advocate for themselves and stresses how important it is to connect with others facing similar diagnoses. Her experience exemplifies the importance of self-advocacy and persistence when navigating symptoms that don’t fit typical expectations.

Rylie’s story is a testament to transformation, from shock and fear after diagnosis to hope and empowerment with treatment and community support. Her experience offers vital lessons for young adults and others about listening to their bodies, seeking quality care, and approaching cancer treatment with resilience and faith.

Watch Rylie’s video above and read through her edited transcript below to learn more about how:
  • Early symptoms may be misunderstood or misdiagnosed; trusting your own body and seeking persistent evaluation is crucial
  • Cancer treatment affects every part of life, including the physical, emotional, and relational parts, and requires strong support systems
  • Fertility preservation is an important consideration, even amid urgent cancer treatment
  • Seeking second opinions and specialized care can significantly improve treatment experience and outcomes
  • You know your body best. Advocate for yourself, no matter what
  • Name: Rylie T.
  • Diagnosis:
    • Colorectal Cancer
  • Staging:
    • Stage 4
  • Age at Diagnosis:
    • 27
  • Symptoms:
    • Sharp lower abdominal pain
    • Severe bloating
    • Fecal impaction
  • Treatments:
    • Surgeries: colon, liver, and small intestine tumor resection; ostomy surgery; ostomy reversal surgery
    • Chemotherapy
    • Immunotherapy
    • Targeted therapy: monoclonal antibody
    • Fertility conservation treatments
Rylie T. colon cancer
Rylie T. colon cancer
Rylie T. colon cancer
Rylie T. colon cancer
Rylie T. colon cancer
Rylie T. colon 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.

Transcript of Rylie’s Interview
  1. My name is Rylie
  2. How we navigate cancer as young adults and a couple
  3. My first symptoms: when things felt off
  4. Advocating for myself and the challenge of getting diagnosed
  5. My reaction to my stage 4 colon cancer diagnosis
  6. I had emergency surgery
  7. Living with an ostomy
  8. Finding the right care team
  9. What my treatment has looked like
  10. My treatments, including fertility treatment, and their side effects
  11. Scans, communication, and no evidence of disease
  12. Hope and faith through cancer
  13. Support from the colorectal cancer community
  14. What I want others to know

My name is Rylie

My name is Rylie. I was diagnosed with stage 4 colon cancer in April 2025.

Family is my main priority. I love being with my family and spending time with them. 

I got engaged two years ago. We were supposed to have our wedding in June, but that was derailed. We’re now planning for this next June. 

My fiancé is my best friend. We love doing house projects together. We have chickens and two dogs. I enjoy working in the garden. I also like road cycling and am just an outdoorsy person, so I love being outside.

I wouldn’t have been able to get through this without my mom or my dad. They’re my number one supporters and have been with me every step of the way. My mom is my role model. She loves the outdoors and flowers. I try to mimic what she does, but I’m the little version of her.

How we navigate cancer as young adults and a couple

It’s been tough. It was a life-changing experience for both of us. 

We used to be active every single day, but with me in the hospital for ten days at a time, my fiancé has had to support me and put house projects on hold. Pushing the wedding back was sad because we put so much work into planning, and we thought 2025 would be the happiest year of our lives, but it ended up being the worst. 

Still, it’s awesome that he stuck by my side through it all. Our lives have completely changed, but we are committed to each other, and that will never change. My body completely changed, and he still loves me for who I am, and I’m so grateful for that.

After our wedding, I thought we’d have a child right away. Being a mom is all I want in life. We’ll eventually get there. Luckily, I had fertility treatments and got my eggs frozen.

My first symptoms: when things felt off

It all started in October 2024. I went to the emergency room with severe lower left abdominal pain and bloating; something just didn’t feel right. The ER staff said I was backed up and sent me home. I accepted that explanation for a while. Six months later, the pain got worse. Over three to four ER visits, I was eventually admitted.

Before the final ER visit, I saw my family doctor because I had a fever for a week and felt unwell at work. She did a check-up, but said I was just backed up. That weekend, I went to the ER three times. Two of those times, I was sent home with pills, but the third time, they kept me, saying I might have a small perforation in my bowel. I stayed for seven days and couldn’t eat or drink. When my belly went down a little, they hoped the perforation would heal on its own and sent me home. 

That Sunday night, I told my fiancé something was very wrong, and he rushed me to the ER. That CT scan was totally different and showed a mass in my bowel and a mass on my liver. They rushed me into emergency surgery that night. Everything happened so fast; I had zero time to process anything.

The main symptoms were sharp pain in my lower left abdomen, severe bloating, and being backed up. I struggled to go to the bathroom, and even when I could, it wasn’t much. Those symptoms just continued to worsen.

Advocating for myself and the challenge of getting diagnosed

It was crazy… You know your body best. Doctors can run scans and tell you things, but only you know how you’re actually feeling. 

I knew something was wrong. Being sent home with a diagnosis of constipation was embarrassing. I was raised with two brothers; I was built to be tough. Still, it was demoralizing.

I had several CT scans. The doctor said that it’s actually easier to read CT scans for a heavier person because their intestines are more spread out, but I have a smaller frame, so everything is squished together. All the scans showed I was backed up, but they couldn’t see underneath the congestion.

My reaction to my stage 4 colon cancer diagnosis

Originally, when they performed a biopsy on my liver after seeing a mass, it came back as scar tissue. One doctor said, “If there’s a mass on the liver, it’s stage 4 colon cancer.” He called it from the start. 

The biopsy showed scar tissue, which was strange. They suspect it was a false negative, or it may have been a different mass. Other than that, no one mentioned “cancer” until a few days later, after more tests.

I was in complete shock. I asked doctors not to share results until my parents were with me. When he said stage 4 colon cancer, the first thing I thought was, “I’m going to die.” Everyone was in shock.

I had emergency surgery

For the emergency surgery, they sliced me from my sternum down to my pelvic area. They took out the tumor on my colon and removed a mass from my liver and parts of my small intestine. They also gave me an ostomy, which was a huge life change. It’s something I’ll never fully get used to.

I still have my ostomy, but am having it reversed on November 18th. I cannot wait to have my body back.

Living with an ostomy

It’s wild to see something on my stomach and learn that it’s my bowel. I’m grateful because it saved my life, but I don’t like it and hate it. 

I feel bad saying that because it did save my life. I had a great nurse who taught me how to take care of it. I couldn’t wear the same clothes; I had to wear baggier clothes to hide it. I’m very self-conscious, so it was hard not being proud of it, but I got semi-used to it and am happy I’ll get a reversal soon.

A doctor was honest with me and said some people never get used to an ostomy. For some, it’s okay, but it’s not my lifestyle. I’m thankful for honesty.

Finding the right care team

My surgeon was amazing, and the nurses at UPMC West Shore were great. We met an oncologist there, but we wanted the best care possible, regardless of cost. We contacted several cancer centers, and Memorial Sloan-Kettering resonated most; they’re in the top two in the nation. 

Their team was easy to reach and supportive, unlike the original oncologist team, which lacked good bedside manner. Bedside manner is critical, as I want to feel cared for.

Don’t be afraid to reach out to multiple cancer centers and get a second opinion. Memorial Sloan-Kettering was our first choice because of its track record. Doing this research is a lot of work, and my family was an incredible support team. I couldn’t have done it without them.

Traveling to Memorial Sloan-Kettering takes 2.5 hours; I’d go every other week for infusions. It’s a whole day affair. It’s worth it, and not too bad.

What my treatment has looked like

My treatment included chemotherapy and targeted therapy with panitumumab. Memorial Sloan-Kettering called it immunotherapy, but technically it was targeted therapy. 

The targeted therapy changed my cells to kill bad cells. I received chemotherapy every other week. I just finished my last pump today.

For each cycle, I’d have an infusion for about 2.5 hours, then go home with a pump for two days.

My treatments, including fertility treatment, and their side effects

The beginning was rough because after surgery, I immediately started physically overwhelming fertility treatments, four shots a day and no time to heal. 

Two days after surgery, the team asked if I wanted to preserve my eggs. I had zero time to process what that meant. After hospitals explained it, I started shots for fertility treatments right after discharge, four shots a day for two weeks. The extraction yielded 40 eggs, with 36 viable. It was rough but worth it.

And then after egg extraction (Monday), I started chemotherapy (Wednesday). My body was still in recovery mode, and the first infusion landed me in the hospital because it caused severe pain. My ovaries were enlarged, causing pressure on my urinary tract, and a mass was pulled out, which was benign. 

The first two treatments were rough due to back-up and pain, but after that, the treatment went well. I had some tiredness and a facial rash, but it was manageable overall.

Scans, communication, and no evidence of disease

Two weeks ago, we were in a different emotional space due to miscommunication between surgery and cancer treatment. I had a scan, and the oncologist said the masses on my ovaries were shrinking. That was news to us. 

After investigating, we learned these were cysts from fertility treatments, not cancer. 

After an MRI and a CT scan, the team scheduled liver resection and ostomy reversal, and afterward, I’ll be in remission. 

Hope and faith through cancer

I leaned heavily into my faith this year. God is the one who got me through this. He tested my strength but rewarded me in the end. 

Without faith and my parents, I couldn’t have made it. 

I try not to use the word “hope.” I want to be positive and manifest certainty that this isn’t coming back.

Support from the colorectal cancer community

It was hard to accept having cancer or an ostomy, so I avoided reaching out or telling people. 

My mom sent me an article about a young woman going through the same thing: stage 3 colorectal cancer, has an ostomy, and runs marathons. I reached out. We quickly became best friends. 

It made a huge difference to have someone who understands. I can always talk to my parents, but only she truly gets it.

What I want others to know

At first, I didn’t want to relive my journey, but I realized how important it is for young people to hear this. Colorectal cancer is often seen as an older person’s disease, but young people should still advocate for themselves. 

I never would have been given a colonoscopy at 27, but if you have concerning symptoms, pay for the colonoscopy. It’s your life. 

Lastly, you know your body best. Always advocate for yourself, no matter what.

Rylie T. colon cancer
Thank you for sharing your story, Rylie!

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