Author: Chris Sanchez

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

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

Regina J. lung neuroendocrine tumor

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

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

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

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

Regina J. lung neuroendocrine tumor

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

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

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

  • Lung neuroendocrine tumor symptoms can masquerade as common complaints like persistent wheezing and chronic cough, but require advanced testing for diagnosis
  • Patients must often push past dismissals and advocate for more advanced diagnostic imaging, especially for rare cancers
  • Survivorship is complex; not enduring chemotherapy or radiation does not diminish a person’s experience or strength
  • Losing half a lung profoundly affects daily life, from seasonal activities to energy levels, requiring adaptation and acceptance
  • Only patients themselves truly know when something isn’t right; trust yourself and advocate strongly for your health.
  • Regina’s transformation: fear and guilt were slowly replaced by gratitude and a commitment to empowering others through storytelling
  • Name: Regina J.
  • Age at Diagnosis:
    • 41
  • Diagnosis:
    • Lung Neuroendocrine Tumor (lung NET)
  • Symptoms:
    • Wheezing
    • Back pain
    • Coughing, sometimes producing blood
  • Treatment:
    • Surgery: partial lung resection
Regina J. lung neuroendocrine tumor
Regina J. lung neuroendocrine tumor
Regina J. lung neuroendocrine tumor
Regina J. lung neuroendocrine tumor
Regina J. lung neuroendocrine tumor
Regina J. lung neuroendocrine tumor
Regina J. lung neuroendocrine tumor

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

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

Transcript of Regina’s Interview
  1. Hi, I'm Regina
  2. Why I decided to vlog my cancer experience
  3. My first symptoms, and when I realized that something was wrong
  4. My symptoms were dismissed until a tumor was found
  5. My reaction to my multi-layered diagnosis
  6. Treatment decision-making and conversations with my care team
  7. The day of my surgery
  8. How my perspective and life have changed after I lost half a lung
  9. How I feel about further treatment, survival, and being a wife and mom
  10. What people don’t understand about a lung neuroendocrine tumor diagnosis
  11. How doctors and medical teams can better support patients
  12. My message of hope to others with neuroendocrine tumors
  13. My advice for anyone hearing my story

Hi, I’m Regina

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

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

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

Why I decided to vlog my cancer experience

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

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

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

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

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

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

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

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

My symptoms were dismissed until a tumor was found

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

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

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

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

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

My reaction to my multi-layered diagnosis

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

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

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

Treatment decision-making and conversations with my care team

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

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

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

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

The day of my surgery

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How doctors and medical teams can better support patients

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

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

My message of hope to others with neuroendocrine tumors

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

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

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

My advice for anyone hearing my story

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

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

Regina J. lung neuroendocrine tumor
Thank you for sharing your story, Regina!

Inspired by Regina's story?

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



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

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

Lynn S. chronic lymphocytic leukemia

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

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

Interviewed by: Keshia Rice
Edited by: Chris Sanchez

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

Lynn S. chronic lymphocytic leukemia

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

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

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

  • A CLL diagnosis can arrive unexpectedly and long after the disease first appears in bloodwork, but effective treatments can help people live well for years with it
  • Treatment plans can evolve, moving from traditional chemotherapy to targeted therapies like BTK inhibitors when side effects or age make older regimens less appropriate
  • A strong support system, composed of partners, friends, and healthcare colleagues, can make medical appointments, treatment decisions, and day-to-day life with CLL more manageable and less isolating
  • Becoming an informed, empowered patient through asking questions, learning about medications, and understanding insurance can reduce anxiety and improve care
  • Lynn’s transformation from oncology nurse navigator to CLL patient advocate shows how lived experience with disease can fuel meaningful advocacy around drug costs, Medicare, and access to care for others
  • Name: Lynn S.
  • Age at Diagnosis:
    • 62
  • Diagnosis:
    • Chronic lymphocytic leukemia (CLL)
  • Symptom:
    • Elevated white blood cell count
  • Treatments:
    • Chemotherapy
    • Targeted therapy: BTK inhibitor
Lynn S. chronic lymphocytic leukemia
AbbVie

Thank you to AbbVie for supporting our patient education program. The Patient Story retains full editorial control over all content.

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

Table of Contents
  1. About Me
  2. How I Found Out I Had CLL
  3. How I Reacted to My CLL Diagnosis
  4. My CLL Diagnosis and Treatment Timeline
  5. My Support System: Family, Friends, and Finances
  6. I Advocate for Drug Cost and Insurance Coverage
  7. How I Live With CLL
  8. My Thoughts on Clinical Trials and Who They Are Best For
  9. Program Highlight: Building a CLL Game Plan: Strategies for Treatment, Trials, and Team Building
  10. I'm Seeing Cancer in Younger People
  11. The Side Effects of BTK Inhibitor Therapy That I Experienced
  12. My Family History, Other Conditions, and Vaccinations
  13. Staying Mentally Grounded and Finding Peace
  14. How Advocacy and Educating Others Help Me Cope
  15. What I Hope Others Take from My Story
  16. Why It’s Important to Be Informed and Empowered as a Patient
  17. Resources I Trust and My Final Thoughts

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

Lynn S. – CLL patient

About Me

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

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

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

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

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

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

How I Found Out I Had CLL

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

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

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

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

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

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

How I Reacted to My CLL Diagnosis

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

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

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

My CLL Diagnosis and Treatment Timeline

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

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

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

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

My Support System: Family, Friends, and Finances

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

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

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

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

I Advocate for Drug Cost and Insurance Coverage

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

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

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

Lynn S. chronic lymphocytic leukemia

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

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

How I Live With CLL

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

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

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

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

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

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

My Thoughts on Clinical Trials and Who They Are Best For

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

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

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

My CLL Story Continues Below

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

Lynn S. chronic lymphocytic leukemia

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

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

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

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

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

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

Dr. Lamanna recommends that CLL patients find specialists.

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

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

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

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

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

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

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

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

Back to My CLL Story

I’m Seeing Cancer in Younger People

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

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

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

The Side Effects of BTK Inhibitor Therapy That I Experienced

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

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

My Family History, Other Conditions, and Vaccinations

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

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

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

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

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

Lynn S. chronic lymphocytic leukemia

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

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

Staying Mentally Grounded and Finding Peace

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

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

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

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

How Advocacy and Educating Others Help Me Cope

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

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

What I Hope Others Take from My Story

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

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

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

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

Lynn S. – CLL patient

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

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

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

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

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

Resources I Trust and My Final Thoughts

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

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

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

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

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

Inspired by Lynn's story?

Share your story, too!

More Chronic Lymphocytic Leukemia (CLL) Stories


Jeff F., Chronic Lymphocytic Leukemia



Symptoms: Fatigue, night sweats



Treatment: Clinical trial (ofatumumab)

Leesa T., Chronic Lymphocytic Leukemia



Symptom: Bruising



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

Michele N., Chronic Lymphocytic Leukemia



Symptoms: Slow healing, scalp infection, enlarged lymph nodes



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

Tamsin W., Chronic Lymphocytic Leukemia with 11q Deletion



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

 

 
 

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

Andrew Ryan Finds New Meaning After Stage 4 Testicular Cancer

Andrew Ryan P. stage 4 testicular cancer

Andrew Ryan Finds New Meaning After Stage 4 Testicular Cancer

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

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

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

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

Andrew P. stage 4 testicular cancer

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

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

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

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

  • The need to be proactive with any unexplained or persistent pain. Early detection matters, even in young and otherwise healthy people
  • How cancer’s impact lingers emotionally and physically, even for those declared cancer-free
  • Facing the possibility of mortality can deepen meaning, motivation, and connection to others
  • How support from family and spirituality can be vital during cancer treatment and recovery
  • Andrew Ryan’s transformation: From disbelief and anger, through pain and despair, to advocacy, resilience, and helping others
  • Name: Andrew Ryan P.
  • Diagnosis:
    • Testicular Cancer
  • Staging:
    • Stage 4 (Metastatic)
  • Age at Diagnosis:
    • 39
  • Symptom:
    • Severe leg pain
  • Treatments:
    • Surgeries: retroperineal lymph node dissection (RPLND), orchiectomy, lung resection
    • Chemotherapy
    • Stem cell transplant
Andrew P. stage 4 testicular cancer
Andrew P. stage 4 testicular cancer
Andrew P. stage 4 testicular cancer
Andrew P. stage 4 testicular cancer
Andrew P. stage 4 testicular cancer
Andrew P. stage 4 testicular cancer

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

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

Transcript of Andrew Ryan’s Interview
  1. My name is Andrew Ryan
  2. My first symptoms: the early warning signs I missed
  3. My immediate emotional response and entering 'fight mode'
  4. Shock, anger, and telling my family
  5. I went back home to New Jersey
  6. Surgical removal and four rounds of outpatient chemotherapy
  7. The cancer started to grow again; I got further treatment
  8. Being NED, ringing the bell, and survivorship
  9. Family, faith, and the mental and spiritual journey
  10. My advice for others facing cancer

My name is Andrew Ryan

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

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

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

My first symptoms: the early warning signs I missed

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

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

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

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

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

My immediate emotional response and entering ‘fight mode’

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

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

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

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

Shock, anger, and telling my family

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

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

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

I went back home to New Jersey

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

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

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

Surgical removal and four rounds of outpatient chemotherapy

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

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

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

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

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

The cancer started to grow again; I got further treatment

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

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

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

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

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

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

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

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

Being NED, ringing the bell, and survivorship

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

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

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

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

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

Family, faith, and the mental and spiritual journey

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

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

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

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

My advice for others facing cancer

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

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

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

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

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

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

Living with Metastatic Papillary Thyroid Cancer: Alyse’s Story

Alyse V. thyroid cancer

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

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

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

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

Alyse V. thyroid cancer

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

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

Watch Alyse’s video and scroll through her edited interview transcript for more about how:
  • Self-advocacy in pursuing a comprehensive evaluation made a difference for Alyse as early diagnosis of metastatic papillary thyroid cancer can be complicated by normal lab results and few physical symptoms
  • Finding a treatment center and team with extensive experience can critically impact both physical outcomes and peace of mind
  • Alyse’s experience highlights how all-consuming the disease’s uncertainty can be, and why support for physical, mental, and emotional health matters so much
  • Quality of life is paramount; living fully, not perfectly, is crucial for all patients facing serious illness
  • Adapting to “what’s next” after treatment is its own transformation, one that includes letting go of perfectionism, accepting support, and rediscovering joy in the everyday
  • Patients are not defined by their disease; Alyse stresses the importance of not allowing cancer to become one’s whole identity
  • Name: Alyse V.
  • Diagnosis:
    • Thyroid Cancer (Papillary Thyroid Carcinoma, Tall Cell Variant, Metastatic)
  • Age at Diagnosis:
    • 36
  • Symptoms:
    • None before routine thyroid examination with her Hashimoto’s disease
    • Lump discovered during thyroid examination
  • Treatments:
    • Surgeries: neck dissection, lymphadenectomy
    • Integrative therapies
Alyse V. thyroid cancer
Alyse V. thyroid cancer
Alyse V. thyroid cancer
Alyse V. thyroid cancer
Alyse V. thyroid cancer
Alyse V. thyroid cancer
Alyse V. thyroid cancer
Alyse V. thyroid cancer

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

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

Transcript of Alyse’s Interview
  1. Hi, my name is Alyse
  2. Fitness before and after my diagnosis
  3. I was diagnosed with Hashimoto’s
  4. Living and training with an undiagnosed thyroid disease
  5. The moment the thyroid nodule was discovered
  6. "How can this be cancer?" – I had no symptoms, but it was cancer
  7. The moment everything changed
  8. Advocating for a second opinion: choosing the right surgeon
  9. How my surgery went
  10. I learned about my tall cell variant
  11. Adjusting to my new normal
  12. My mental health and coping with uncertainty
  13. Exploring integrative and alternative options
  14. What I want others to know

Hi, my name is Alyse

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

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

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

Fitness before and after my diagnosis

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

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

I was diagnosed with Hashimoto’s

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

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

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

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

Living and training with an undiagnosed thyroid disease

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

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

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

The moment the thyroid nodule was discovered

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

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

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

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

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

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

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

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

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

The moment everything changed

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

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

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

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

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

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

Advocating for a second opinion: choosing the right surgeon

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

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

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

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

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

How my surgery went

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

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

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

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

I learned about my tall cell variant

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

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

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

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

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

Adjusting to my new normal

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

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

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

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

My mental health and coping with uncertainty

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

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

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

Exploring integrative and alternative options

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

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

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

What I want others to know

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

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

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

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

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

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

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Lizzie F., Thyroid Cancer



Symptoms: No outright signs or symptoms; evaluation by new doctor found a nodule

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Lainie J.

Lainie J., IDC, Stage 2, HER2+



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

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

Vikki F. nasal squamous cell carcinoma

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

Courage, Connection, and Acceptance with Nasal Squamous Cell Carcinoma

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

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

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

Vikki F. nasal squamous cell carcinoma

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

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

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

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

  • See that persistent symptoms deserve thorough investigation. Keep pushing if answers aren’t clear
  • Learn that appearance changes from head and neck cancer can cause deep psychological distress, but can never diminish one’s worth
  • Realize that who you are matters more than how you look. As Vikki says, “It is the least interesting thing about you”
  • See how support groups and sharing with others facing facial differences can reduce isolation and build resilience
  • Explore Vikki’s transformation: From valuing external beauty to embracing connection, self-compassion, and a broader definition of identity
  • Name: Vikki F.
  • Age at Diagnosis:
    • 34
  • Diagnosis:
    • Head and Neck Cancer (Nasal Squamous Cell Carcinoma)
  • Symptoms:
    • Nosebleeds that persisted for years
    • Nose changed in shape
    • Nasal pain
    • Migraines
  • Treatments:
    • Surgeries: subtotal rhinectomy, reconstruction surgery including radial forearm free flap, bone grafts, and cartilage
    • Chemoradiation
Vikki F. nasal squamous cell carcinoma
Vikki F. nasal squamous cell carcinoma
Vikki F. nasal squamous cell carcinoma
Vikki F. nasal squamous cell carcinoma
Vikki F. nasal squamous cell carcinoma
Vikki F. nasal squamous cell carcinoma
Vikki F. nasal squamous cell carcinoma

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

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

Transcript of Vikki’s Interview
  1. I'm Vikki
  2. My early symptoms: nosebleeds and pain
  3. My nose changed shape
  4. My diagnosis experience was shocking and confusing
  5. I had mixed emotions, relief, and realization
  6. Finding the right care team
  7. We found that my cancer was aggressive
  8. Facial reconstruction, hospital stays, and my recovery
  9. My treatments had brutal effects
  10. Mental health, identity shift, and life lessons
  11. My advice for other patients

I’m Vikki

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

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

My early symptoms: nosebleeds and pain

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

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

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

My nose changed shape

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

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

My diagnosis experience was shocking and confusing

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

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

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

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

I had mixed emotions, relief, and realization

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

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

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

Finding the right care team

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

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

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

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

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

We found that my cancer was aggressive

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

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

Facial reconstruction, hospital stays, and my recovery

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

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

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

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

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

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

My treatments had brutal effects

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

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

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

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

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

Mental health, identity shift, and life lessons

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

Nutrition, exercise, and kindness helped speed recovery.

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

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

My advice for other patients

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

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

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

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

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

Thank you for sharing your story, Vikki!

Inspired by Vikki's story?

Share your story, too!

More Head and Neck Cancer Stories

Vikki F. nasal squamous cell carcinoma

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



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

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

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



Symptom: Persistent tongue ulcer that increased in size

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

Alyssa N., Adenoid Cystic Carcinoma



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

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

Eva G., Oral Cancer, Stage 4



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

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



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

Treatments: Surgeries (bilateral mastectomy with reconstruction, lumpectomy, craniotomy, Mohs, surgery, wide local excision), hormone therapy, radiation therapy
...
Categories
AYA Cancers Chemoradiation Chemotherapy Colorectal Lobectomy Metastatic Metastatic Patient Stories Surgery Treatments

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

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


Melissa W., Stomach Cancer (Gastric Adenocarcinoma), Stage 4B (Metastatic)



Symptoms: Feeling like something was in her throat, occasional nausea, acid reflux, occasional feeling of having boiling water in her stomach, soreness in the bottom of her ribcage

Treatments: Chemotherapy, immunotherapy
...
Dawn C. stomach cancer

Dawn C., Stomach Cancer (Gastric Adenocarcinoma, Hereditary Diffuse Gastric Cancer), CDH1+, Stage 4 (Metastatic)



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
...
Niccole B. stomach cancer

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



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

Treatments: Chemotherapy (hyperthermic intraperitoneal chemotherapy or 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)
...
Frank B. stomach cancer

Frank B., Stomach Cancer (EBV-Positive Gastric Adenocarcinoma), Stage 4 (Metastatic)



Symptoms: Weight loss, night sweats, fatigue, swelling in one testicle, urinary tract infection, back pain

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

Luwen S., Cardia Cancer, Stage 4 (Metastatic)



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)
...
Arelly R. stomach cancer

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



Symptoms: Nausea, blood in stool, side pain, extreme fatigue, excessive burping

Treatments: Surgeries (gastrectomy, port placement), chemotherapy, immunotherapy, targeted therapy (antibody-drug conjugate)
...

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
Bone Sarcoma Chemotherapy Limb salvage surgery Patient Stories Sarcoma Surgery Treatments

Kelly’s Osteosarcoma (Bone Cancer) Story: How a College Cheerleader Faced a Life-Changing Diagnosis

Kelly M. bone sarcoma

Kelly’s Osteosarcoma (Bone Cancer) Story: How a College Cheerleader Faced a Life-Changing Diagnosis

Kelly was in the midst of college life in March 2025, balancing her studies with the rhythm of cheerleading practices, when her world shifted with a diagnosis of bone cancer (osteosarcoma). What started as lingering soreness and knee pain that seemed like overexertion gradually progressed to swelling and persistent discomfort. An MRI ordered by her doctor revealed a tumor, and her daily routine changed from cheer workouts to clinical tests and questions about what would come next.

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

Kelly’s emotional landscape transformed with her diagnosis. She initially struggled to grasp the gravity, believing that osteosarcoma (a kind of sarcoma that usually affects the long bones of the legs or arms) wasn’t cancer, before her oncologist explained the reality of chemotherapy, hair loss, and surgery. Overwhelmed by fear and loss of control, Kelly paused her studies and cherished plans, including college cheer nationals and studying abroad. This pivot fueled a deeper introspection and the gradual acceptance of her cancer patient identity; she found hope through setting new goals, supported by a determined effort to walk, travel, and participate in local events, wherever possible.

Kelly M. bone sarcoma

Communication became central as Kelly shared her news with loved ones and teammates. She navigated support systems within her sorority and friend group, ultimately choosing vulnerability, including posting openly on Instagram to empower others and remove stigma. Her surgical experience, especially limb-sparing or limb salvage surgery, required profound mental preparation, trust in her care team, and courage to meet postoperative challenges. Kelly describes physical therapy as intensely difficult, yet rewarding; her first full steps post-surgery marked a turning point in rebuilding confidence.

Fertility preservation emerged as another major decision, with the help of a supportive oncology nurse. The experience gave Kelly confidence and certainty in an uncertain period, easing subsequent encounters with medical treatment. Throughout her experience, she faced emotional and physical changes, including issues with self-image arising from chemotherapy-related hair and eyebrow loss. She pivoted those moments into advocacy, supporting others diagnosed with sarcoma and participating in awareness events. 

Kelly’s experience highlights complexity, courage, and communal strength, culminating in her heartfelt message: “Everything will be okay and things will work out.” Watch her video and read through the edited transcript of her interview for more on how:

  • Listening to your body and advocating for medical answers is crucial
  • Emotional support from friends, family, and care teams can reshape a difficult experience
  • Adapting to unexpected changes fosters strength even in vulnerable moments
  • Transformation happens when patients pursue proactive goals and self-care even after setbacks
  • The experience of cancer doesn’t define worth or identity. It reveals new sources of strength.
  • Name: Kelly M.
  • Diagnosis:
    • Bone sarcoma (osteosarcoma) of the left femur
  • Age at Diagnosis:
    • 18
  • Symptoms:
    • Persistent soreness and knee pain
    • Visible knee and leg swelling
  • Treatments:
    • Surgery: limb salvage surgery
    • Chemotherapy
Kelly M. bone sarcoma
Kelly M. bone sarcoma
Kelly M. bone sarcoma
Kelly M. bone sarcoma
Kelly M. bone sarcoma
Kelly M. bone sarcoma
Kelly M. bone sarcoma
Kelly M. bone sarcoma
Kelly M. bone sarcoma
Kelly M. bone sarcoma
Kelly M. bone sarcoma
Kelly M. bone sarcoma

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 Kelly’s Interview
  1. Hi, my name is Kelly
  2. When my first symptoms started
  3. The emotional impact of my diagnosis, and how I dealt with it
  4. How I told my teammates and friends
  5. Preparing for limb-sparing surgery
  6. I had physical therapy after surgery
  7. What it’s like to do an egg retrieval when you’re 18
  8. My biggest challenge and how cancer changed my perspective
  9. What I learned about myself
  10. Becoming an advocate and supporting others
  11. What I want people to know

Hi, my name is Kelly

I was diagnosed with osteosarcoma in March 2025. I’m from New York.

I’ve been cheerleading since I was five years old. I’ve always been active in any way I can. When I wasn’t cheerleading, you could find me running or at the gym. I was very into running 5Ks since my parents would run together. They actually ran marathons together. So, it’s kind of in my genes to be active. I’ve always been very involved in school, whether through sports or clubs.

When I was younger, I tried different sports, but cheer was the only one that stuck. I cheered throughout elementary, middle, and high school, and in my first year of college, I was on the cheer team as well.

A lot of my self-determination comes from cheerleading and tumbling, especially by pushing myself to get new skills. The joy of landing a new skill for the first time is unmatched. It’s such a rush of excitement, knowing you’re the only one who can do that because you pushed yourself. You decide if you can or cannot do something. Landing new skills always kept me motivated.

When my first symptoms started

On top of cheerleading practice, which I had twice a week in college, I would also go to the gym three times a week. After a leg workout, I stayed sore for days and noticed my knee felt a little off. I thought I’d gone too hard that day and should take it easy. 

Weeks passed, and I still had on-and-off pain, especially while lying in bed. I could not find a comfortable position on the train home from school for my knee. I thought maybe I was just really sore from doing a lot.

I kept cheering for months. By December, I decided to see a doctor since the pain hadn’t gone away for over a month, and I was starting to limp. My mom said, “You need to go to the doctor; this is not normal.” The orthopedic doctor did an X-ray and concluded I was overworking my knee, prescribed physical therapy, and thought it was nothing serious. I was happy; it was supposedly not a real problem.

I iced my knee, put tape on it, and wore a brace, but nothing helped. At my first appointment, a follow-up for spring break was scheduled. After an amazing Florida vacation, I returned for my follow-up, still thinking nothing serious was wrong. My parents were at work, so I went alone. The doctor saw that my knee was visibly swollen, not dramatic but noticeable. He said, “It should have healed by now. Let’s do an MRI today.” I had no idea what an MRI was, but said “okay.”

After the MRI, I went on with my day. About an hour later, the doctor called, earlier than expected, and said, “We think there’s a tumor.” I was alone, 18 years old, and I freaked out. In my mind, tumor equaled cancer. They dropped the bomb with no further information. I called my dad: “This is what they told me. I don’t know what to do.” He said, “Come home, we’ll talk about it.”

From there, it was test after test. I had a biopsy within days since they needed to figure out what it was. Less than a week after the MRI, I was diagnosed with osteosarcoma.

The emotional impact of my diagnosis, and how I dealt with it

After the MRI, I went back to school for two days. The plan was to come home, have my biopsy, then go back. I had never had a procedure or anesthesia before, so I was worried about the procedure itself, not realizing I should fear the results more.

After the biopsy, my parents got the call and spoke privately, then said, “We’re going to the hospital for a talk with your new oncologist tomorrow.” I clung to hope. At the oncologist’s office, she laid everything out. When she told me it was osteosarcoma, I thought, “Oh, that’s not cancer.” That’s a huge problem; I’m passionate now about making others aware of what this is. No one has heard of osteosarcoma unless it’s part of your life.

Initially, I thought, “It’s just osteosarcoma, not cancer,” until she explained chemo, hair loss, surgery, everything I’d go through. It finally hit: I am a cancer patient.

I didn’t go back to school that semester. I missed huge plans to study abroad and college cheer nationals; everything felt taken away. My life plans felt completely discarded. That loss of control was very scary for me.

A lot of people told me, “Everything happens for a reason.” I’m making new plans: to study abroad this summer for my major, and likely not continuing with cheer when I go back. Maybe this is the universe’s way, since I’d never have stopped cheering on my own. I try to stay positive; it’s really hard sometimes, but my treatment plan gives me motivation to move forward. Tomorrow, I’m being admitted for my second-to-last chemo. Having things to look forward to keeps me going, like study abroad opportunities and concert tickets

I try to incorporate fun when possible. My doctors call me crazy because I’ll get discharged and the same day go to Pickle Fest. When I’m feeling good, I make the most of it, especially now that I’m walking much better after surgery.

How I told my teammates and friends

For cheer, we practiced Tuesdays and Thursdays. Home for my biopsy, I told teammates, “I won’t make practice; I just had my biopsy.” I didn’t know my diagnosis yet, so I thought I’d be back soon. Then, after everything started happening, I had to send another message: “This is what’s really going on. I’m so sorry, but I won’t be back this semester.”

I also told my sorority sisters, who were incredibly supportive. They made Zoom options for me to join the chapter meetings, inventing ways to keep me involved. For my closest friends, I shared updates step by step. My roommate, one of my closest friends, got the news about the tumor, then comforted me after I found out I needed surgery.

It was hardest telling acquaintances, people who’d just ask “How’s school?” How do you just say, “I have cancer now”? Two months after diagnosis, I posted on Instagram. Once I felt peace with my plan, I wanted to put it out there, not hide or feel embarrassed. It just happened to me, not because I did something wrong.

Preparing for limb-sparing surgery

I found out about surgery the same week as my biopsy. I had four procedures in March: biopsy, port placement, egg retrieval, and a second biopsy for a lymph node. By then, I’d gotten used to anesthesia. I’d tell myself, “Getting the IV is the hardest part; the rest I’ll sleep through, then wake up okay.”

It was strange going into surgery, knowing I wouldn’t walk afterward, and would have to work to regain weight-bearing on my leg. When I had free time, I felt pressure to use my leg while I still could.

I had immense trust in my doctors, especially my surgeon, who’d been with me the whole process. What scared me was the pain after surgery and how my leg would feel; I didn’t know what to expect.

My surgery was a huge success. In the recovery room, my surgeon told me, “It’s gone. The tumor is gone.” I was on cloud nine; I was so happy and proud to have gotten through something so big.

I had physical therapy after surgery

Recovery was a long, difficult process. I had to do PT while on chemo, walking with a walker while trying to make progress, then feeling set back during inpatient chemo days in a hospital bed. Sometimes it seemed impossible to progress while balancing chemo.

One of my favorite PT moments was in September when I got cleared to fully weight-bear and took my first steps in three months, holding my surgeon’s hand. I realized how hard recovery is, but proving I could do it made me feel capable of anything.

There was a tough period over the summer when my surgeon wasn’t happy with my progress in knee flexion, and I broke down, feeling I wasn’t doing enough despite working so hard with chemo on top.

What it’s like to do an egg retrieval when you’re 18

The day after I was diagnosed, I had a fertility consult because chemo brought a risk of infertility. I had just done a biopsy; I didn’t want another hard thing, and I’m terrified of needles. But I thought, “Future me will want this chance to have children.”

So, I chose to go through with it, and my family friend Jen, a former oncology nurse, helped every night with injections and supported me mentally. She was like my therapist, prepping me for what chemo would be like.

Every morning and evening, Jen did injections. My trigger shot was very time-sensitive, and she was there at 12:30 a.m. The procedure itself was remarkably quick, just 15 minutes.

Knowing I have healthy eggs ready to be used if needed gave me certainty in an uncertain time. It made me so much stronger, and after that, bloodwork and IVs were much easier for me.

My biggest challenge and how cancer changed my perspective

The hardest part was seeing other people live the life I wanted, like friends studying abroad and having fun, while I was stuck in a hospital bed. It makes you wonder if you did something to deserve it, but there’s no answer. Osteosarcoma doesn’t have a known cause; genetic testing showed no genetic link.

It felt like I was being punished for something I didn’t cause, working so much harder than my peers just to return to school.

I am much more independent, and everything is now in perspective. I want to live my life and never take anything for granted. Sometimes I think, “I wish delayed flights or hard assignments were my biggest problem.”

I don’t want to say no to any opportunities anymore. I want to do everything while I’m healthy.

What I learned about myself

I am way stronger than I thought. I always considered myself physically strong through cheer, but mentally, I now know I can handle anything thrown my way.

It encourages me through hard assignments. If I got through cancer, I can get through anything.

I have more emotional confidence, but I also face identity issues stemming from my experience.

People ask if I’m excited for my hair to grow back, but I’m more excited for my eyebrows and eyelashes. Your face changes after chemo, and losing my eyebrows made me not recognize myself, especially when my iPhone’s FaceID stopped working for me.

I never had confidence issues before, but now I do, because of things I can’t control. Wearing my wig helps a little, but my face still looks different, and people say it’s temporary, but I don’t like how I look. I used to think I was beautiful, but now I don’t recognize myself, and it hurts.

Sometimes I’ll ask my dad to go to the store instead; I don’t want to be seen. Watching old videos makes me sad for my younger self, who didn’t deserve this.

Becoming an advocate and supporting others

Although I never wanted this, it gave me a chance to advocate for sarcoma awareness, which I’m now passionate about.

Recently, a girl who saw my story reached out, saying she’d just been diagnosed and my story gave her hope. It amazed me to have such an impact, to be the person I wished I had when first diagnosed.

Connecting with her and learning that we have nearly identical chemo drugs and experiences was refreshing. I’ve met many through cancer, but never someone so similar.

As an advocate for sarcoma awareness, I joined the Sarcoma Foundation of America’s Race to Cure Sarcoma in October. I set a goal to walk a mile with no crutches, even though I’d relied on crutches for months.

I achieved that with my family, close friends, boyfriend, and their parents supporting me. It was one of my favorite experiences, proving I can reach my goals and showing how much progress I’ve made.

What I want people to know

Everything is going to be okay. 

When I started chemo, I couldn’t imagine reaching the end. 17 more rounds felt impossible, but now I’m almost there. I did it.

I want everyone to know everything will be okay and things will work out.

Kelly M. bone sarcoma
Thank you for sharing your story, Kelly!

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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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More Stomach Cancer Stories


Melissa W., Stomach Cancer (Gastric Adenocarcinoma), Stage 4B (Metastatic)



Symptoms: Feeling like something was in her throat, occasional nausea, acid reflux, occasional feeling of having boiling water in her stomach, soreness in the bottom of her ribcage

Treatments: Chemotherapy, immunotherapy
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Dawn C. stomach cancer

Dawn C., Stomach Cancer (Gastric Adenocarcinoma, Hereditary Diffuse Gastric Cancer), CDH1+, Stage 4 (Metastatic)



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
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Niccole B. stomach cancer

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



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

Treatments: Chemotherapy (hyperthermic intraperitoneal chemotherapy or 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)
...
Frank B. stomach cancer

Frank B., Stomach Cancer (EBV-Positive Gastric Adenocarcinoma), Stage 4 (Metastatic)



Symptoms: Weight loss, night sweats, fatigue, swelling in one testicle, urinary tract infection, back pain

Treatments: Chemotherapy, immunotherapy
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Luwen S. cardia cancer

Luwen S., Cardia Cancer, Stage 4 (Metastatic)



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)
...
Arelly R. stomach cancer

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



Symptoms: Nausea, blood in stool, side pain, extreme fatigue, excessive burping

Treatments: Surgeries (gastrectomy, port placement), chemotherapy, immunotherapy, targeted therapy (antibody-drug conjugate)
...