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.
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
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I 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.
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’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
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I 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.
Symptoms: Issues swallowing, swollen gland in the neck
Treatments: Palliative chemotherapy was offered but declined, nutritional changes to support her comfort and energy, meditation and mindfulness practices, self-directed healing methods
Family, Loss, and a Second Chance: Valerie’s Metastatic Thyroid Cancer Story
Valerie was diagnosed with metastatic thyroid cancer (papillary thyroid carcinoma) in January 2025 after a series of concerning changes in her body, including unexplained bruising, persistent weight loss, and extreme cold intolerance. Her first concern, had her previously-fought leukemia come back? And while these aren’t typical symptoms of thyroid cancer, looking back, they were early signs that something in her thyroid system wasn’t functioning normally. As a registered nurse and devoted family advocate, she drew strength from her loved ones while navigating one of the most challenging periods of her life.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez & Jeff Forslund
Valerie was concerned her symptoms could be attributed to her history of having had leukemia. But new tests came back negative. After an unrelated car accident and neck pain that was getting worse days after the accident, radiology colleagues recommended scans that revealed suspicious thyroid findings. The diagnosis of thyroid cancer, which was confirmed through a needle biopsy, brought news of a malignant form with a gene mutation associated with rapid progression and lymph node spread. Valerie’s support system mobilized: her husband returned home from a work trip, and her family rallied around her.
Valerie’s treatment was supposed to begin with a thyroid lobectomy, but it escalated to a total thyroidectomy when scans showed that the cancer had spread to her entire thyroid gland. While surgery margins were clear, subsequent bloodwork and imaging soon revealed that it had also spread to various lymph nodes, making further biopsies necessary and ultimately requiring lymphadenectomy and neck dissection surgery. Valerie encountered the possibility of voice loss and the need for radioactive iodine therapy. Side effects were difficult, including loss of taste and fatigue.
Throughout her experience, Valerie has remained proactive and reflective. She adjusted to the need for lifelong medication, adopted daily routines to ensure consistency, and processed layers of grief from infertility and family loss. She met each setback with gratitude and by focusing on small wins, thanks to her community and the comfort of advocacy. She now manages regular monitoring and medication while emphasizing emotional resilience, acceptance, and the power of patient support. Valerie’s experience offers a powerful lesson: with self-advocacy, support, and inner strength, patients can find meaning and healing even in the face of formidable illness.
Valerie’s video and the edited transcript of her interview provide key insights and lessons from her experience:
Early, persistent symptoms such as bruising and cold intolerance should always prompt a thorough investigation for thyroid cancer and similar conditions
Advocacy within healthcare, whether through using medical connections or self-advocacy, can accelerate diagnosis and timely treatment
Emotional and family support underpin resilience through the challenges of advanced cancer treatment
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I 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.
Non-Hodgkin Lymphoma at 29: How Ashley Navigated Motherhood and DLBCL
Ashley’s experience with diffuse large B-cell lymphoma (DLBCL), a type of non-Hodgkin lymphoma, began during a period that should have been filled with new beginnings and joy – the arrival of a new baby into her life. Instead, Ashley, now a mother of three, confronted a growing list of symptoms shortly after her pregnancy when dizziness, cardiac complications, and difficulties breastfeeding all led up to an unexpected, and life-altering cancer diagnosis.
Being diagnosed with DLBCL weeks before her 30th birthday set Ashley apart from the typical patient profile, as most individuals face this diagnosis later in life. Her youth contributed to challenges in being heard by her medical team, intensifying her frustration as treatments like chemotherapy caused debilitating side effects. Emotional struggles compounded Ashley’s physical battles: fear of leaving her children, grief over lost moments with her newborn, and the continual responsibilities of motherhood that do not pause for illness.
Despite assurances from leading cancer doctors regarding advances in treatment options, Ashley’s cancer responded poorly to initial therapy, necessitating additional interventions, including CAR T-cell therapy, which required extended separation from her family. The transition from hope to uncertainty was difficult, but new developments with bispecific antibodies and ongoing research provide Ashley and other patients reasons to hold onto hope for recovery and better outcomes even amid refractory disease.
Ashley’s experience is marked by transformation, not just physically but emotionally and spiritually. She learned to lean on her family and faith for support, grappled with feelings of guilt and anger, and emerged with the conviction to advocate for herself and encourage others to trust their intuition. Her story is a testament to the unseen emotional dialogue cancer patients navigate, and to the importance of self-advocacy, community, and accessible innovations in cancer care.
Key Story Takeaways:
Trust and advocate for your own body; patients know their symptoms best and should persist until they are heard.
Emotional struggles, like fear, guilt, and anger, are often invisible but just as challenging as the physical aspects of disease.
Family support and faith provided critical anchors for Ashley, helping her endure even the most difficult days.
DLBCL can affect patients of any age, and younger individuals may face unique challenges in being taken seriously by the medical team.
New therapies, including CAR T-cell therapy and bispecific antibodies, offer hope even in refractory cases.
Advocacy and self-acceptance are vital; patients experiencing life-altering conditions deserve compassionate care and respect for their experience.
Name: Ashley P.
Age at Diagnosis:
29
Diagnosis:
Diffuse Large B-Cell Lymphoma (DLBCL)
Staging:
Stage 4
Symptoms:
Feeling like holding breath when bending down or picking up objects from the floor
Waking abruptly at night, feeling “off”
One episode of fainting (syncope)
Presence of a large mass in the breast
Treatments:
Chemotherapy
Bridge therapy of chemotherapy and radiation
CAR T-cell therapy
Thank you to Genmab and AbbVie for their support of our independent patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I didn’t realize how big the lump was. It was literally the size of a baseball. But it didn’t raise any red flags.
Ashley P., Stage 4 DLBCL Patient
Facing the Unexpected: Early Signs and Diagnosis
Ashley P.: I’m not afraid to die by any means. I would say I fear leaving my children and leaving them without a mom.
What should have been one of the happiest times in her life became filled with worry when Ashley was diagnosed with a cancer she hadn’t heard of before: non-Hodgkin lymphoma, specifically diffuse large B-cell lymphoma or DLBCL.
Ashley: I started having symptoms while I was pregnant. I had our baby in December 2023 and at the end of my pregnancy, I was having a lot of complications with my heart rate. In February 2024, I started to feel super lightheaded, as if I was hanging upside down for a very long time. It reached a point where I was getting concerned about being alone with the baby. I felt like I was going to pass out. What if I’m holding him and something happens?
Dizziness wasn’t her only concern. Ashley also started to have trouble breastfeeding. A trip to see her midwife helped lead to the diagnosis.
Ashley: I went to nurse him one day and I couldn’t extend my nipple. It was completely caved in. I tried everything to get it unclogged, like hot showers and massages, but they didn’t work, so I reached out to my midwife.
I didn’t realize how big the lump was. It was literally the size of a baseball. But it didn’t raise any red flags. When I saw my midwife, she looked at it and said, “Ashley, this is very, very large. You need to go to the breast cancer center,” which was wild to me.
I went in and they did biopsies on both breasts and the lymph nodes in my armpits, and that’s how I found out.
We have more FDA-approved medicines for lymphoma than for any other cancer… It’s awesome because it means we have more options for patients
Dr. Joshua Brody, Hematologist-Oncologist
A Young Mother and a Rare Diagnosis
The average age for a DLBCL diagnosis is in the mid- to late-60s. Ashley says being diagnosed at a much younger age made the treatment process even more frustrating.
Ashley: I found out I had cancer literally two weeks before my 30th birthday. They said that I was so young and that everybody they usually see with this cancer is in their late 70s. They told me that it was going to be an absolute breeze.
I had a very hard time being heard because I was so young. Chemotherapy rocked my world. I was extremely sick. I barely had time to recover between rounds. I kept telling my oncologist that I was so sick and miserable, and the response that I kept getting was, “You’re young. You shouldn’t be.”
DLBCL can be a devastating diagnosis. But top cancer doctors, Dr. Amir Steinberg from Westchester Medical Center and Dr. Joshua Brody from Mount Sinai, want people to know that there’s a lot of hope.Watch their discussion.
Dr. Joshua Brody: We’re very lucky because, even though lymphoma is technically the fifth most common cancer in America, we have more FDA-approved medicines for lymphoma than for any other cancer, even more than for breast cancer, which is so incredibly common. It’s awesome because it means we have more options for patients
Dr. Amir Steinberg: There’s so much that’s changed in the last 20 to 30 years, most especially in the last five years. Things are changing for the better so rapidly for patients. As doctors, we have so much to catch up on and stay up on in terms of the knowledge out there, but it’s totally worth it because it will make patients’ lives better and more fulfilling.
Despite assurances from doctors, treatment was daunting.
Ashley: I don’t think people understand that you can see all the physical changes. You can see the hair loss, the bloating, the puking, and even the literal color draining from their face. But you cannot see their inner dialogue. You can’t see them fighting for their lives. You can’t see the anger or the conversations with God about why. Questions of, “Did I do something wrong to deserve this?”
The world doesn’t stop… You still have to show up and be a mom and a wife… and that is such a hard challenge.
Ashley P., Stage 4 DLBCL Patient
The Unseen Struggle: Emotions Behind the Experience
As a mom of three, Ashley dealt with mixed emotions of guilt, stress, and sadness over the experiences she lost.
Ashley: I honestly think I got robbed of the joy. He’s my last baby and I had this huge goal of nursing. It was easy with him. I had all these plans, but I was in so much pain from my cancer.
Then I have a nine-year-old and an almost five-year-old, so it was difficult juggling that and trying to figure out the best way to tell them what I was going through. That was probably the roughest part.
The world doesn’t stop and that thought came into my head so many times while I had cancer. You still have to show up and be a mom and a wife. You still have to be all of these things while battling the biggest physical challenge that you’ll ever go through and the biggest emotional and mental struggle that you’ll ever have to battle. You still have to show up for everybody around you and that is such a hard challenge.
One of the hardest emotions Ashley had to deal with was anger.
Ashley: I knew that I was mad and not the best version of myself. Then you have this feeling of complete guilt. What if you die and this is who you showed up as and who you left as? This is how you treated your fiancé and your kids? Don’t you value life? Didn’t you say that you wanted to show up differently? Didn’t you say that you were going to be a completely different person because now you know the value of life and how it can be taken away? Now, you have this complete guilt trip of who you’re showing up as. But at the same time, you’re so mad. You’re so mad.
I thought, ‘What if I go through all of this and then I still have cancer?’ That was something that I didn’t want to face.
Ashley P., Stage 4 DLBCL Patient
During those moments, Ashley leaned into her family and her faith.
Ashley: I’ve seen other people talk about it, but there is a sense of peace and knowing that I have not experienced in my life. Definitely not the peace that carried me through. I had to be here for my kids. There were so many times when I thought that if I were doing this for myself, I wouldn’t have gone through it. It was too much. It was so hard that I truly don’t know if I would have shown up in the same capacity.
CAR T-cell Therapy and Next Steps
After six rounds of chemo, Ashley thought the hardest part was over. But her DLBCL was refractory, meaning it did not respond well to initial treatment.
Ashley: When I did my chemo, they didn’t even talk to me about the steps and what they would do. Again, age was a huge factor. We did have conversations about other things out there. It went from a 70% chance of beating this and the odds are good of going to Mayo, to my odds going down to 10%. The biggest concern was waiting for the CAR T-cell therapy. But after, they told me, “This is your last option. If this doesn’t work, there isn’t anything more out there for you to do.”
CAR T-cell therapy came with new challenges.
Ashley: When you go through CAR T-cell therapy, you have to be gone and by the hospital for 47 days, away from your family. I thought, “What if I go through all of this and then I still have cancer?” That was something that I didn’t want to face. I didn’t even want to have that be a possibility. I just wanted to be done.
Whenever possible, we try to offer trials because that’s how we advance the science and get higher cure rates. They’re essential.
Dr. Amir Steinberg, Hematologist-Oncologist
Ashley’s experience reflects the complexity of DLBCL treatment. It’s one of the reasons why doctors are constantly looking to new research in clinical trials for answers. One of the answers is a newer option in immunotherapy called bispecific antibodies.
Dr. Brody: Even for people who relapse in the first year or in their third line, there is great evidence for bispecific antibody plus chemotherapy. Overall, it certainly seems to be a bit safer than transplant, maybe even safer than CAR T-cell therapy, and it’s a lot more accessible to folks who are being treated in the community when they don’t have a CAR T-cell therapy center nearby. If you’re getting more options, then that can only be a good thing. People would rather have a clear answer. But they would rather have better therapies and better options.
Dr. Steinberg: Whenever possible, we try to offer trials because that’s how we advance the science and get higher cure rates. They’re essential.
Advocacy and Self-Empowerment: Lessons Learned
While Ashley eventually found a great and supportive medical team, she wishes she had advocated for herself more from the beginning.
Ashley: That is one thing I regret and one thing I always tell somebody. You have to advocate for yourself. I’m not that person. I’m very shy. I don’t want to make people upset. I want to make everybody happy. I struggled very much with advocating for myself.
Advocate for yourself. If something doesn’t feel right, if you know something’s wrong, or if you feel sick or in pain, talk about it until you’re blue in the face and somebody listens to you.
Ashley P., Stage 4 DLBCL Patient
Advice for Others: Faith, Family, and Resilience
Ashley’s advice to others? Advocate for yourself, lean into your faith, and learn to accept the changes.
Ashley: Be honest with how you feel. Have those hard conversations. Lean into God as much as you possibly can because at times, that’s literally all you have. You would be very surprised at what you’re willing to go through and what you’re willing to overcome for the people that you love. It’s almost like an adrenaline rush to make it through.
Advocate for yourself. If something doesn’t feel right, if you know something’s wrong, or if you feel sick or in pain, talk about it until you’re blue in the face and somebody listens to you. You know your own body. You have that intuition for a reason and you know when something is wrong.
Moving Forward: Transformation and Community
Ashley: You make it. You make it out alive. You will never be this version of yourself again and that is completely okay. Sometimes we have to go through something completely terrifying and life-changing to figure out who we want to show up as and what’s important to us. It’s going to suck so badly. But you find out who your people are. So many people love you. And you make it.
Looking to the Future: Treatment Paths for Relapsed/Refractory DLBCL
Hosted by The Patient Story Team | 1h 9m 30s
Hear Dr. Joshua Brody and Dr. Amir Steinberg discuss new treatments for relapsed/refractory DLBCL and how academic–community collaboration helps patients access the best care. Moderated by DLBCL Advocate Stephanie Chuang.
Webinars in this series must be completed in order.
Pick up where you left off →
Thank you to Genmab and AbbVie for their support of our independent patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptoms: Feeling like holding breath when bending down or picking up objects from the floor, waking abruptly at night feeling “off,” one episode of fainting (syncope), presence of a large mass in the breast
Treatments: Chemotherapy, bridge therapy of chemotherapy and radiation, CAR T-cell therapy
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 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
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I 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.
Symptoms: Issues swallowing, swollen gland in the neck
Treatments: Palliative chemotherapy was offered but declined, nutritional changes to support her comfort and energy, meditation and mindfulness practices, self-directed healing methods
Life Changed Overnight: Rylie’s Experience with Stage 4 Colorectal Cancer
Rylie is someone whose life has always revolved around her family, home projects, and being outdoors. She enjoys gardening with her mom, cycling with her fiancé, and caring for her chickens and dogs. In April 2025, the joys of that routine were interrupted when persistent abdominal pain and bloating kept sending her back to the ER, where she was told it was constipation. Trusting her intuition and refusing to ignore what her body was telling her, she pushed for answers. That persistence led to the discovery of a mass and a diagnosis of stage 4 colorectal cancer.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez & Jeff Forslund
Rylie had to have emergency surgery. Her surgical treatment was extensive, involving the removal of a tumor in her colon, a liver mass, and parts of her small intestine. She also received an ostomy, which she had reversed.
Her cancer treatment involved chemotherapy, immunotherapy, and targeted therapy, but not before Rylie underwent fertility preservation, a major decision made quickly after surgery. Her care team involved multiple institutions, and she and her family sought out the best specialists for her treatment.
Throughout her experience, Rylie relied deeply on her faith and the support of her family, especially her mother, who she describes as her role model. She openly shares the emotional challenges of postponing her wedding plans and adjusting to physical changes, but remains grateful for the unwavering support of her fiancé and family.
Rylie encourages patients to advocate for themselves and stresses how important it is to connect with others facing similar diagnoses. Her experience exemplifies the importance of self-advocacy and persistence when navigating symptoms that don’t fit typical expectations.
Rylie’s story is a testament to transformation, from shock and fear after diagnosis to hope and empowerment with treatment and community support. Her experience offers vital lessons for young adults and others about listening to their bodies, seeking quality care, and approaching cancer treatment with resilience and faith.
Watch Rylie’s video above and read through her edited transcript below to learn more about how:
Early symptoms may be misunderstood or misdiagnosed; trusting your own body and seeking persistent evaluation is crucial
Cancer treatment affects every part of life, including the physical, emotional, and relational parts, and requires strong support systems
Fertility preservation is an important consideration, even amid urgent cancer treatment
Seeking second opinions and specialized care can significantly improve treatment experience and outcomes
Surgeries: colon, liver, and small intestine tumor resection; ostomy surgery; ostomy reversal surgery
Chemotherapy
Immunotherapy
Targeted therapy: monoclonal antibody
Fertility conservation treatments
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
My name is Rylie. I was diagnosed with stage 4 colon cancer in April 2025.
Family is my main priority. I love being with my family and spending time with them.
I got engaged two years ago. We were supposed to have our wedding in June, but that was derailed. We’re now planning for this next June.
My fiancé is my best friend. We love doing house projects together. We have chickens and two dogs. I enjoy working in the garden. I also like road cycling and am just an outdoorsy person, so I love being outside.
I wouldn’t have been able to get through this without my mom or my dad. They’re my number one supporters and have been with me every step of the way. My mom is my role model. She loves the outdoors and flowers. I try to mimic what she does, but I’m the little version of her.
How we navigate cancer as young adults and a couple
It’s been tough. It was a life-changing experience for both of us.
We used to be active every single day, but with me in the hospital for ten days at a time, my fiancé has had to support me and put house projects on hold. Pushing the wedding back was sad because we put so much work into planning, and we thought 2025 would be the happiest year of our lives, but it ended up being the worst.
Still, it’s awesome that he stuck by my side through it all. Our lives have completely changed, but we are committed to each other, and that will never change. My body completely changed, and he still loves me for who I am, and I’m so grateful for that.
After our wedding, I thought we’d have a child right away. Being a mom is all I want in life. We’ll eventually get there. Luckily, I had fertility treatments and got my eggs frozen.
My first symptoms: when things felt off
It all started in October 2024. I went to the emergency room with severe lower left abdominal pain and bloating; something just didn’t feel right. The ER staff said I was backed up and sent me home. I accepted that explanation for a while. Six months later, the pain got worse. Over three to four ER visits, I was eventually admitted.
Before the final ER visit, I saw my family doctor because I had a fever for a week and felt unwell at work. She did a check-up, but said I was just backed up. That weekend, I went to the ER three times. Two of those times, I was sent home with pills, but the third time, they kept me, saying I might have a small perforation in my bowel. I stayed for seven days and couldn’t eat or drink. When my belly went down a little, they hoped the perforation would heal on its own and sent me home.
That Sunday night, I told my fiancé something was very wrong, and he rushed me to the ER. That CT scan was totally different and showed a mass in my bowel and a mass on my liver. They rushed me into emergency surgery that night. Everything happened so fast; I had zero time to process anything.
The main symptoms were sharp pain in my lower left abdomen, severe bloating, and being backed up. I struggled to go to the bathroom, and even when I could, it wasn’t much. Those symptoms just continued to worsen.
Advocating for myself and the challenge of getting diagnosed
It was crazy… You know your body best. Doctors can run scans and tell you things, but only you know how you’re actually feeling.
I knew something was wrong. Being sent home with a diagnosis of constipation was embarrassing. I was raised with two brothers; I was built to be tough. Still, it was demoralizing.
I had several CT scans. The doctor said that it’s actually easier to read CT scans for a heavier person because their intestines are more spread out, but I have a smaller frame, so everything is squished together. All the scans showed I was backed up, but they couldn’t see underneath the congestion.
My reaction to my stage 4 colon cancer diagnosis
Originally, when they performed a biopsy on my liver after seeing a mass, it came back as scar tissue. One doctor said, “If there’s a mass on the liver, it’s stage 4 colon cancer.” He called it from the start.
The biopsy showed scar tissue, which was strange. They suspect it was a false negative, or it may have been a different mass. Other than that, no one mentioned “cancer” until a few days later, after more tests.
I was in complete shock. I asked doctors not to share results until my parents were with me. When he said stage 4 colon cancer, the first thing I thought was, “I’m going to die.” Everyone was in shock.
I had emergency surgery
For the emergency surgery, they sliced me from my sternum down to my pelvic area. They took out the tumor on my colon and removed a mass from my liver and parts of my small intestine. They also gave me an ostomy, which was a huge life change. It’s something I’ll never fully get used to.
I still have my ostomy, but am having it reversed on November 18th. I cannot wait to have my body back.
Living with an ostomy
It’s wild to see something on my stomach and learn that it’s my bowel. I’m grateful because it saved my life, but I don’t like it and hate it.
I feel bad saying that because it did save my life. I had a great nurse who taught me how to take care of it. I couldn’t wear the same clothes; I had to wear baggier clothes to hide it. I’m very self-conscious, so it was hard not being proud of it, but I got semi-used to it and am happy I’ll get a reversal soon.
A doctor was honest with me and said some people never get used to an ostomy. For some, it’s okay, but it’s not my lifestyle. I’m thankful for honesty.
Finding the right care team
My surgeon was amazing, and the nurses at UPMC West Shore were great. We met an oncologist there, but we wanted the best care possible, regardless of cost. We contacted several cancer centers, and Memorial Sloan-Kettering resonated most; they’re in the top two in the nation.
Their team was easy to reach and supportive, unlike the original oncologist team, which lacked good bedside manner. Bedside manner is critical, as I want to feel cared for.
Don’t be afraid to reach out to multiple cancer centers and get a second opinion. Memorial Sloan-Kettering was our first choice because of its track record. Doing this research is a lot of work, and my family was an incredible support team. I couldn’t have done it without them.
Traveling to Memorial Sloan-Kettering takes 2.5 hours; I’d go every other week for infusions. It’s a whole day affair. It’s worth it, and not too bad.
What my treatment has looked like
My treatment included chemotherapy and targeted therapy with panitumumab. Memorial Sloan-Kettering called it immunotherapy, but technically it was targeted therapy.
The targeted therapy changed my cells to kill bad cells. I received chemotherapy every other week. I just finished my last pump today.
For each cycle, I’d have an infusion for about 2.5 hours, then go home with a pump for two days.
My treatments, including fertility treatment, and their side effects
The beginning was rough because after surgery, I immediately started physically overwhelming fertility treatments, four shots a day and no time to heal.
Two days after surgery, the team asked if I wanted to preserve my eggs. I had zero time to process what that meant. After hospitals explained it, I started shots for fertility treatments right after discharge, four shots a day for two weeks. The extraction yielded 40 eggs, with 36 viable. It was rough but worth it.
And then after egg extraction (Monday), I started chemotherapy (Wednesday). My body was still in recovery mode, and the first infusion landed me in the hospital because it caused severe pain. My ovaries were enlarged, causing pressure on my urinary tract, and a mass was pulled out, which was benign.
The first two treatments were rough due to back-up and pain, but after that, the treatment went well. I had some tiredness and a facial rash, but it was manageable overall.
Scans, communication, and no evidence of disease
Two weeks ago, we were in a different emotional space due to miscommunication between surgery and cancer treatment. I had a scan, and the oncologist said the masses on my ovaries were shrinking. That was news to us.
After investigating, we learned these were cysts from fertility treatments, not cancer.
After an MRI and a CT scan, the team scheduled liver resection and ostomy reversal, and afterward, I’ll be in remission.
Hope and faith through cancer
I leaned heavily into my faith this year. God is the one who got me through this. He tested my strength but rewarded me in the end.
Without faith and my parents, I couldn’t have made it.
I try not to use the word “hope.” I want to be positive and manifest certainty that this isn’t coming back.
Support from the colorectal cancer community
It was hard to accept having cancer or an ostomy, so I avoided reaching out or telling people.
My mom sent me an article about a young woman going through the same thing: stage 3 colorectal cancer, has an ostomy, and runs marathons. I reached out. We quickly became best friends.
It made a huge difference to have someone who understands. I can always talk to my parents, but only she truly gets it.
What I want others to know
At first, I didn’t want to relive my journey, but I realized how important it is for young people to hear this. Colorectal cancer is often seen as an older person’s disease, but young people should still advocate for themselves.
I never would have been given a colonoscopy at 27, but if you have concerning symptoms, pay for the colonoscopy. It’s your life.
Lastly, you know your body best. Always advocate for yourself, no matter what.
World-renowned Lung Cancer Expert Shares His Experience Becoming a Lung Cancer Patient
If you look up Dr. Ross Camidge, you’ll see the incredibly extensive work he’s done in lung cancer research for over 20 years, fighting for his patients and for others. Lung cancer patient advocates have long described him as a true patient-focused oncologist who has devoted his life to saving lives.
Now he’s sharing that he is trying to save another life — his own — after becoming a stage 4 lung cancer patient. As a leading oncologist at the University of Colorado, Dr. Camidge has had to manage this seismic shift from physician to patient.
Symptoms began subtly, manifesting as shoulder pain and changes in his breathing, and led swiftly from a chest X-ray to comprehensive scans revealing widespread disease, including metastases to the brain and bones. Dr. Camidge’s rapid transition from observer to recipient of care highlighted not only the emotional strain but also the necessity of maintaining routines within his family. His daughters, then aged 10 and 12, became central to his motivation, their everyday lives anchoring him amid uncertainty.
Dr. Camidge describes his cancer as an “uneasy neighbor” — no longer cured, but not dying, responsible for periods of disruption and adaptation. His story is marked by determination to keep living fully in 90-day cycles, carving out time for new experiences and mentoring others in medicine and life.
Thank you, Dr. Camidge, for all you do for patients and for sharing your story to help others.
I decided that I wanted to become a doctor at around 11 or 12. It was either that or a veterinarian, mostly because it was easier to examine dogs than people. But that changed somewhere along the way.
Medical school is an undergraduate degree in the UK. I started medical school at 19. I was a year older than most of my peers because I’d taken a year off to travel the world. Compared to America, we were all ridiculously young. I went to the University of Oxford for my first three years of medical school and then did a hard science PhD at the University of Cambridge. I worked in a lab for four years and came back to clinical medicine a little older and wiser.
The PhD had been a bit of a disaster, so I learned to deal with failure as much as success. I went into clinical medicine with the mind of a scientist but the soul of a physician. It was like doing an experiment where the person was the experiment: trying to make a diagnosis and intervening with treatment. Unlike those four years in the lab, I could show success in a matter of hours in patients like Mrs. Jones in front of me, and I liked it.
I was relatively socially awkward, but being a physician gave me the opportunity to talk to people. They would listen to me and I would listen to them. It was a social tonic for me.
I didn’t know when exactly I wanted to become an oncologist. It became fascinating after several years into my training, before I started an attachment in oncology. It seemed to combine skills I’d developed along the way. These things always appear to have a narrative in retrospect, but it was random noise at the time. Oncology had molecular biology, science, clinical trials, and a very strong interaction with the patient.
A diagnosis of cancer strips away the nonsense in conversations. You don’t talk about the weather; you get down into the nitty-gritty of someone’s life. Now we keep people alive for years, so it becomes a very close relationship, which I’ve gained from enormously and hopefully my patients have, too.
A diagnosis of cancer strips away the nonsense in conversations.
Dr. Ross Camidge, Lung Cancer Expert
Choosing Lung Cancer as a Specialty
You’re influenced by what happens along the way. I was training in Edinburgh, the capital city of Scotland. At the time, breast cancer had all the money and all the breakthroughs, but it was incredibly crowded — where the “cool kids” went.
Lung cancer was very common, especially among the working class in Scotland, and there was a huge unmet need. The patients were — and still are — the most wonderful because, for whatever reason, they don’t ask, “Why me?” They’re very accepting and humble. Many of them were smokers, which made me want to take a step towards them.
During that time, targeted therapies for lung cancer were being developed. I got a glimpse that molecular biology was going to go mainstream and that genes would become part of everyday oncology care. I saw the future: patients I liked, a huge unmet need, and exciting science about to happen. That’s why I ended up specializing in lung cancer.
There was a huge unmet need. The patients were — and still are — the most wonderful because, for whatever reason, they don’t ask, ‘Why me?’ They’re very accepting and humble.
Dr. Ross Camidge, Lung Cancer Expert
Life Outside Medicine: Humor and Personality
If my wife or best friends described me, I think the first thing they would say is that I have a sense of humor. Almost everything can be turned into something that makes me or someone else laugh. Even a trip to SuperTarget can get my wife giggling about whatever we’re talking about.
There’s fun in life. People are often surprised in my clinic because I don’t distinguish between me as Ross and me as a doctor. There’s a lot of laughter; it’s a great relaxer and leveler. Over the years, patients poke fun at me, which I love.
Do I have time for hobbies? I don’t have pastimes — no time that needs passing. As my health changed, I decided there were things that I at least wanted to try. Typically, I would work, spend time with my two teenage daughters, exercise, and occasionally cook. Like all men, I think I deserve a medal when I cook because I don’t do it often.
I am very clean with dishes — that’s one of my stipulations. I try to instill that in my youngest daughter, who likes cooking with me: you have to tidy up as you go along.
People are often surprised in my clinic because I don’t distinguish between me as Ross and me as a doctor. There’s a lot of laughter; it’s a great relaxer and leveler.
Dr. Ross Camidge, Lung Cancer Expert
Humor and Communication With Patients
My humor doesn’t usually involve jokes with a beginning, middle, and end, but my favorite, which comes from Christmas with my girls, is: Two snowmen talking and one goes, “Can you smell carrots?” You have to have the visual image.
The difference between a good joke and a bad joke is the audience; timing is everything. You don’t tell a joke immediately after giving a cancer diagnosis. The purpose is to remove stress and barriers. I don’t wear a white coat and I try very hard to remember the language I used before becoming a doctor. You don’t use big words or technical terms like Kaplan-Meier curves unless necessary. Communication is the goal and not to show how clever you are.
Communication is the goal and not to show how clever you are.
Dr. Ross Camidge, Lung Cancer Expert
Discovering the Diagnosis
My First Lung Cancer Symptoms
My mum, who was 90 at the time, came from Edinburgh to stay with us in 2022. As she improved, she insisted on returning to Edinburgh in May that same year. Around that time, I felt like I pulled something in my left shoulder after exercise, so I had a massage. The person said it was tight. It loosened up and then returned, but I didn’t think much about it. I thought I was just getting older.
Around the same time, I noticed that when I slept on my right side, my breathing sounded different. I was doing a two-phase exhale where there was a slight wheeze at the end. I wanted it to be asthma, but I kept wondering why it happened only on one side.
I tried my wife’s inhaler, which helped a bit, but I made an appointment with my primary care physician, who was a locum. He went down the asthma route, prescribed something, and said that if it didn’t work, we’d do something else. I said, “By the way, I’m a thoracic oncologist. Could we just do a chest X-ray?” He complied and I had the X-ray right away.
While I was checking my emails, the GP called and said, “There’s something on your chest X-ray; you need a CT scan.” As he spoke, I pulled up the X-ray and instantly knew it was lung cancer. There was a mass at the top of my right lung and a partial collapse.
I also saw dots in the other lung: metastatic.
I called my wife, who was with the girls on vacation, and told her not to worry and to go about her day. That same afternoon, I had a CT scan and saw that the cancer had spread. There was a mass in my right lung, lymph nodes in my chest, and bone deposits. I knew it was metastatic. A radiologist friend, who normally doesn’t interact directly with patients, called to tell me and apologized for the news; it was hard for her, but very touching.
There was a mass in my right lung, lymph nodes in my chest, and bone deposits. I knew it was metastatic.
Dr. Ross Camidge, Lung Cancer Expert
Scan Results
Saturday brought a PET scan and Sunday an MRI of the brain. The cancer had spread, with deposits in my brain, including the brainstem. The brainstem is only about an inch-and-a-half across, and I had a deposit about an inch wide — not compatible with life, yet there I was looking at it.
Monday, I had a bronchoscopy and a biopsy, performed by a friend; another friend, a pathologist, was present to confirm sampling. I didn’t pull favors; they just did this. From the chest X-ray on Friday morning to Tuesday morning, I knew I had a specific mutation, metastatic cancer, and the right treatment as an expert in the field.
Sometimes, when a patient passes, their family gives me unopened bottles of pills, which help others start therapy. Weeks before, I’d gotten just such pills from a patient’s family, which were the ones I needed, so by Tuesday afternoon, I started them. Later, I called the patient’s husband, saying his wife would be pleased we used her pills to start someone on therapy early — I didn’t say that it was me.
The GP called… As he spoke, I pulled up the X-ray and instantly knew it was lung cancer.
Dr. Ross Camidge, Lung Cancer Expert
Processing My Stage 4 Lung Cancer Diagnosis
Family, Emotions, and Planning
Having spent 20 years doing this, responding was automatic and professional, but reality would intervene. In the evening, my wife and I would sit on the stoop and cry, talking through what to tell the girls, who were 10 and 12. We wanted a plan with all the facts and treatment, so that the message was not a period at the end, but a dotted line into the future.
A week after the X-ray, we told them: Daddy has the same condition as his patients, he’s started therapy, and he’s on a pill. It’s not a cure, so the cancer’s not going away, but you’ve met some patients at fundraising events, and they’re doing well.
My eldest asked, “Are you going to die?” because that’s what teenagers say. It’s not a yes or no; it’s “Well, it’s not curable, but we’ll see how it goes. We’re not going to ask anything more of you; maybe I’ll ask for a hug, but your life stays the same.”
My eldest asked, ‘Are you going to die?’
Dr. Ross Camidge, Lung Cancer Expert
Reconciling Being Both Doctor and Patient
People say, “This shouldn’t happen to anyone, but especially not to you,” but I don’t think anyone deserves cancer more or less than I do. If anything, I know about it, so I can probably deal with it better. I think of it as taking one for the team. Less than a week in, part of my brain saw it as a privilege — a full circle moment of working on something and then literally walking in the shoes of my patients. I wasn’t angry.
In the first weeks, I’d lose control and sob uncontrollably, mainly thinking about my girls and the possibility of not having a role in their future. Dads are supposed to do certain things with their daughters. The feeling of leaving them vulnerable was hard.
Another thing that made me cry — and took longer to process — was when anyone was being nice to me. I kept the diagnosis close, but people reached out, and it’s hard to deal with others’ anxiety. I’m dealing with my own stuff; I don’t have time for yours. But you also have to accept kindness and love — not just give lip service, but actually absorb it, which is surprisingly hard.
Less than a week in, part of my brain saw it as a privilege — a full circle moment of working on something and then literally walking in the shoes of my patients. I wasn’t angry.
Dr. Ross Camidge, Lung Cancer Expert
Seeing Life Differently
Family Vacation
We had a vacation in the Florida Keys booked a week after my diagnosis, which was perfect timing. I had started targeted therapy, so we could go. Every moment and photograph feels different now because you have the concept that someone will look back on them and you won’t be there.
My wife was taking a picture of me and the girls in their bathing suits, giggling as I smiled and pointed skyward. It could mean, “This is my number one daughter, and this is my number one daughter, too.” Or maybe, if I’m not here, I’m pointing upwards so they know that Daddy’s looking down. Maybe that’s cheesy, but that’s what I felt.
Every moment and photograph feels different now because you have the concept that someone will look back on them and you won’t be there.
Dr. Ross Camidge, Lung Cancer Expert
The Girls’ Experience and Second-Line Treatment
The girls coped well. We didn’t burden them with every scan and bump. I’m a believer in minimizing cancer cell diversity — evolution needs diversity, so you want to minimize the palette. Even though the pill worked, I consolidated with chemotherapy, then radiation to all known disease sites, similar to what I would do for my own patients. Fatigue made me sleep more. The girls were fine and got used to finding me asleep on the sofa.
About 2 1/2 years in, an area progressed. I described oligoprogression as everything is controlled and when a weed comes up, you don’t panic, you just treat it. I had radiotherapy and thought to try another chemotherapy course for any microscopic disease, considering a new drug from a friend in the pharmaceutical industry. I discussed it with my oncologist, who was also a former trainee, and we tried adding this drug.
While some tolerate it fine, I had a terrible time. I had rash, scabs, couldn’t eat, lost 10-15% body weight, and threw up a lot. The side effects exaggerated those of chemotherapy, so I moved into the basement so the girls didn’t have to see me run to the bathroom as often. The oldest struggled, found it upsetting, and was polite but somewhat distanced. The youngest would sit on the end of the bed and tell me about her day, which was incredibly valuable — acting normal, showing I was still present.
I’ve recovered now. My hair has returned, I regained the weight — maybe too much — and I’m back to my routine of living 90 days at a time, which was the time between scans.
The youngest would sit on the end of the bed and tell me about her day, which was incredibly valuable — acting normal, showing I was still present.
Dr. Ross Camidge, Lung Cancer Expert
Maintaining Privacy During Treatment
For the first 2 1/2 years, privacy was easy. I only told my family, some close friends, and my medical team. I run the program. The surgeons didn’t need to know, but the radiation oncologists and pathologists knew.
When I told the team, I was a mess, but ended with three bullet points: treat me the same — if you were horrible, keep being horrible; keep the circle of trust — patients don’t need to panic; look after yourselves — it’s a shock for you, too. That worked until I had the bad reaction to the treatment, so I skipped conferences and kept the Zoom camera off as I felt so bad, like death with vomiting and constipation. I didn’t want my life to end this way or any public declaration to bring value. When I felt better in September 2025, three years after the diagnosis, I came out of the cancer closet.
I checked with the girls at a family meeting for their awareness. Beforehand, the counselor wasn’t sure the youngest had internalized what my diagnosis meant because she was 10 at the time. The counselor wanted black-and-white: Daddy is going to die from his lung cancer. During our family meeting, I used that line and everyone cried. Then, as teenagers do, they said, “What’s for dinner now?” Normality resumed, at least outwardly.
When I told the team, I was a mess, but ended with three bullet points: treat me the same… keep the circle of trust… look after yourselves.
Dr. Ross Camidge, Lung Cancer Expert
Sharing My Story: My Why
Coming out after three years had value. I could say, “You’ve interacted with me for three years, and there was value in that — you’ve been interacting with a cancer patient. Surprise!” I want to stand up and show that cancer doesn’t mean the end of value or end of productive life.
At conferences, I don’t need to be introduced as a patient — I just happen to be one. The goal is to let cancer become as much as a footnote in a speaker’s resume as diabetes — irrelevant unless germane.
I want to stand up and show that cancer doesn’t mean the end of value or end of productive life
Dr. Ross Camidge, Lung Cancer Expert
What Patient Advocacy Means: Perspective Shift
People want this Hollywood story: a terrible physician becomes nice because of cancer. I don’t think I was ever that bad. One ongoing mission is how we report side effects — grading is imprecise, missing duration. I tracked my own activities, like email replies during chemotherapy. They dropped to zero for two or three days after treatment and then returned, a visual representation of real impact for others. That’s how I see the value — showing actual patient function, not theoretical toxicity.
I benefited from my own work — how we surveil people in therapy, watch the brain, and consolidate with radiation. I was even involved in the initial trials for the drug that I’m on. I also benefited from research by my colleagues and patients who came before.
Living With Uncertainty
I’m comfortable living with the unknowns. I know the worst-case and best-case scenarios, and having seen and lived those examples, I’m okay with uncertainty.
When people say, “You’re no evidence of disease, right?” it’s not that simple. I have things going on. I’m not cured, but I’m not actively dying. It’s a middle ground — an uneasy relationship with cancer, like a slightly annoying neighbor. Sometimes it’s quiet, sometimes it knocks on the wall, but you deal with it.
I know the worst-case and best-case scenarios, and having seen and lived those examples, I’m okay with uncertainty.
Dr. Ross Camidge, Lung Cancer Expert
How I Live Life Differently Now
Now, I turn down things I don’t want to do. I no longer feel I must be a good citizen and join boring committees. I carve out time to try new things with the 90-day challenge by trying something new between scans. Yesterday, I did my first knitting class. I was terrible at it, but it was a new experience. Mentoring, encouraging, sharing mistakes and successes, that’s my legacy; I’m passionate about that.
Messages for My Daughters on Their Birthdays
You’re conflicted. You want things to be normal — kids ignoring you, rolling their eyes — but also want them to understand your situation. There’s a delight in not forcing yourself into their lives. The more they behave like typical teenagers, the better.
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.
Symptoms: Pelvic pain, joint and bone pain, breast lump, extreme lightheadedness and dizziness, vomiting, fainting spells, swollen lymph node in the neck, neuropathy, headaches, unexplained weight loss, severe anemia Treatments: Radiation therapy to the brain, chemotherapy, immunotherapy ...
Live with Hope for Yourself: Deb’s Multiple Breast Cancer Diagnoses
Deb has lived with metastatic breast cancer for seven years, originally diagnosed stage 4 triple-positive breast cancer in 2018 while raising her young daughter. Five years later, in 2023, she discovered a new lump and learned she had developed a second, unrelated breast cancer that was early stage and had a different profile.
Her life today is a blend of motherhood, advocacy, and strength. A longtime activist and English–Spanish interpreter, Deb has used her voice to push for understanding, empathy, and better support for people living with breast cancer. What began as two life-altering diagnoses has become a commitment to helping others feel seen, supported, and less alone.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Deb’s story began in 2016, when she found a lump while she was breastfeeding her daughter, but it was dismissed as a clogged milk duct. Two years later, the lump had not only persisted but had also grown, leading to a de novo metastatic breast cancer diagnosis. The “de novo” distinction means the initial diagnosis was already at stage 4 or metastatic. “I didn’t know what metastatic meant,” Deb recalls. Once biomarker testing was complete, she learned it was HER2-positive, hormone receptor-positive breast cancer, or “triple positive breast cancer.” The early months were filled with fear, tests, and treatments, but also immense love from her community, who helped her care for her young daughter. When she reached no evidence of disease in 2018, her optimism clashed with the reality that metastatic breast cancer is often managed, not cured.
Living with both bipolar disorder and cancer, Deb describes her reality as one of constant adjustment. “Some days, the mental illness is harder on me than the breast cancer,” she says. Her transparent advocacy helps others balance emotional health with ongoing treatment.
In 2023, Deb faced a new, separate early-stage breast cancer diagnosis. Treating both simultaneously tested her physically and emotionally, but her resilience remained unshaken.
Deb’s breast cancer experience continues to evolve. Today, her scans again show no evidence of active disease, yet she acknowledges the uncertainty that remains including being on active treatment. What keeps her grounded, she says, is hope: hope for herself, for her daughter, and for a better understanding of metastatic disease. “Do it for you,” she tells others living with this diagnosis. “You deserve to have hope for yourself.”
Watch Deb’s video above and scroll down to read the edited transcript of her interview for more on how:
Metastatic breast cancer is lifelong and demands ongoing adaptation
Hope can evolve, from doing it for others to valuing one’s own life and wellbeing
Mental health challenges can be as significant as physical ones
Support networks and advocacy communities provide essential strength
Parenthood can coexist with cancer care when boundaries and love guide the balance
Name: Deb O.
First Diagnosis:
First Diagnosis: De Novo Triple-Positive Breast Cancer
Second Diagnosis: ER-Positive, HER-Negative Breast Cancer
Staging:
First Diagnosis: Stage 4
Second Diagnosis: Early-stage
Age at Diagnosis:
First Diagnosis: 37
Second Diagnosis: 42
Symptoms:
First Diagnosis: Appearance of lump that later on increased in size, orange peel-like skin around inverted nipple, persistent ache under right arm
Second Diagnosis: appearance of lump
Treatments:
First Diagnosis: Chemotherapy, targeted therapy, hormone therapy
Second Diagnosis: Surgery (mastectomy), chemotherapy, radiation therapy, CDK 4/6 inhibitor
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I live with metastatic breast cancer, HER2-positive, hormone receptor-positive. I’ve been living with it for seven years. I also have an early-stage breast cancer diagnosis from 2023. I’m living in southern Utah right now.
I’m a mom to a beautiful 11-year-old daughter. Before motherhood, I was an activist for over 20 years. I’m also an English–Spanish translator and interpreter, with much of my time spent volunteering.
Originally from California, when I moved to Salt Lake City, I found activist groups that interested me and poured my heart into community involvement. Everything changed when I had my daughter, but I continue to do advocacy now, with my focus shifting towards breast cancer.
Advocacy is incredibly important to me; I’ve moved my background in mental health advocacy into the breast cancer world, because it’s the life I’m living now.
My daughter Estelar—her name means “stellar”—is the biggest-hearted, kindest kid you’d ever meet. She’s in sixth grade and was only four when I was diagnosed, so this is all she’s ever known: mom living with cancer. She’s very mature about it, and I take her to therapy so she has ways to cope. Estelar is a creative kid; she loves Roblox and graphic art, and she’s an artist, though she didn’t get that from me. She’s always trying to bring a smile to everyone she knows and is very protective of me. Sometimes, she takes on a caregiver role, and I have to remind her that I’m the mom and she’s the daughter. She’s incredibly sweet. Sometimes she offers, “Mom, you don’t have to walk me this morning if you’re not feeling well.” But I cherish our walks to school and always try to be there, unless I really can’t. Estelar has adjusted remarkably, though I do worry about her falling into caregiver habits. “I don’t want her to think that’s her job in any way”.
Therapy has helped a lot. When I was diagnosed, a hospital social worker took Estelar around the hospital and explained things in child-friendly terms, even using a doll. She’s always been aware that things are changing. She struggles sometimes, feels sad, but overall has been processing it very well. She’s able to talk to me about her worries, and she calls my infusion days “port medicine day.” It’s super cute. She knows I’ll feel a little worse the next day, but she’s so supportive.
My diagnosis and how my family and I handled it
The story of my diagnosis actually begins before 2018. In 2016, while breastfeeding, I felt a lump in my right breast. At an appointment, my provider told me it was probably just a clogged milk duct, saying I was too young for breast cancer and had no family history, so I let it go.
Life got busy as a single mom of a two-year-old, and, as is common in Latino families, mothers often put their medical needs aside. But two years later, the lump had grown. In 2018, after encouragement from a new partner, I scheduled an appointment, and things moved quickly.
I was seen at a clinic; the second provider, a female physician, took things seriously. Within a day, I was scheduled for a mammogram and a biopsy at the Huntsman Cancer Institute. I was alone during the biopsy, which was incredibly painful and frightening.
Soon after, I received the diagnosis call while boarding a train with my four-year-old daughter en route to preschool. I shared the news matter-of-factly with a friend on the train, holding back emotion for my daughter’s sake: “I’m a mom, and the day still had to go on. I would deal with this later.”
Later that day, reality hit as I was walking home, tears streaming down my face, carrying my daughter. It was a slow realization that everything would change. Nothing was ever going to be the same again.
Navigating urgency and my first treatments
That first month after diagnosis was a whirlwind. The hospital scheduled endless tests: PET/CT scans, a bronchoscopy, and port placement for chemotherapy.
I hadn’t even decided what I wanted to do yet, but there was a sense of urgency. My oncologist reminded me, “You have a four-year-old, and this is aggressive cancer.” Therapy helped, and my top priority was doing whatever it took to be there for my daughter. Three weeks later, I was told my cancer was stage 4, metastatic, throughout the mediastinum and lymph nodes.
It was a lot of uncomfortable first-time experiences, and honestly, I’m not really sure how I got through that, but I do know that I had a lot of community with me. Community support was invaluable; friends and community members helped with my child, appointments, and rides.
By June 1st, I started my first chemo. My sister-in-law Jenny left her job to help, especially with my daughter. That summer, despite treatment and illness, we tried to have fun: concerts, dating, and staying active in the community. Through it all, I didn’t know what “metastatic” truly meant and thought I might beat cancer.
After chemo, my first PET scan showed “No Evidence of Disease” (NED). I celebrated, believing I had beaten cancer, but my doctor explained I’d need treatment indefinitely.
I didn’t have time to feel angry because everyone was so excited by the clear PET scan news. The word ‘indefinitely’ just weighed on me.
Advocating, community, and mental health
Reaching NED was both joyous and sobering.
For two years, I didn’t seek out other women with metastatic breast cancer; I didn’t want to know. But the pandemic changed things, and I found a strong online community. Treatment, scans, and appointments have become normal over the past seven and a half years.
I also live with bipolar disorder, which complicates everything. Some days, mental illness is harder than cancer. Abigail, an advocate friend, helps lift my spirits, shares memes, and trains me as a mentor for other patients.
My second diagnosis: finding out I had a new cancer
In 2023, I was ready to celebrate five years of living “NED” with metastatic breast cancer. But a month before my scheduled scans, I found a new lump while doing a monthly self-check.
Scan day came just as Metastatic Breast Cancer Awareness Day arrived. I was hopeful, but my scan wasn’t clear. The whirlwind began again.
This time, I was older, without my in-person community, and faced a changing body from years of medication. After a painful biopsy, my partner by my side, the results showed it was a completely different breast cancer: hormone receptor-positive, HER2-negative. I got a second opinion from my first oncologist, who confirmed that it was a new cancer, not progression.
Treatment required chemo again, a pause in my metastatic regimen, and surgery, which I hadn’t been eligible for during my initial stage IV diagnosis. I had a mastectomy, another course of chemo, and suffered through radiation and new side effects like lung scarring. This time, my daughter had more questions, and could see I wasn’t as strong as the first time. You have to keep adapting, keep adjusting. That’s what it is like, living with multiple breast cancer diagnoses.
Months later, a clear scan brought relief. I could return to my regular treatment schedule for metastatic disease.
Living with metastatic breast cancer
Metastatic breast cancer never really goes away.
There’s worry; will the earlier-stage cancer come back and metastasize? Will progression happen?
Doctor appointments and scans consume my time, and sometimes it’s hard to find the fun I used to have.
Advocacy and support organizations
Any type of community you have is so beneficial when you’re going through a diagnosis.
Three organizations have been especially supportive. The first is Project Life, an online wellness house for women with metastatic breast cancer, with programs like journaling, yoga, and support sessions.
The second, Living Beyond Breast Cancer, holds advocacy training and mentorship programs, especially for young women diagnosed under 45.
The third organization, For the Rest of Us, is an online empowering community for women of color, focused on community education and fundraising.
Meeting others with breast cancer, in-person and online, brings joy and helps fight isolation, even though it’s tough losing friends to this disease.
My advice for others
There are many misconceptions about metastatic breast cancer. People need to know it is lifelong and incurable, and we need research for a cure.
More people are living longer, thanks to medication advances, but also remember we are more than our diagnosis. We are mothers, daughters, partners, and community members.
Hope can be elusive, especially at low moments, even before cancer. But it’s vital. Don’t just have hope for your children or family. Have hope for you, because you matter, exactly as you are.
You’re not alone. Educate yourself, take care of your mental health, and seek counseling or support groups. Don’t wait too long to meet other people who get it.
Cancer Details: ER positive = estrogen receptor positive 1st Symptoms: Dimpling/lump found on breast Treatment: Mastectomy, AC/T chemotherapy, hysterectomy, reconstruction
Laura’s Stage 4 ALK+ Lung Cancer Experience Balances Treatment and Quality of Life
For months, Laura managed a stubborn cough, but with a quiet pull from her intuition that something was not right. In South Carolina, where she ran a small handmade jewelry business, she also noticed deep fatigue and strange joint pain creeping into her days. These symptoms appeared slowly and at different times, so no clear connection was made. Intervention would come when, during a routine physical, she mentioned this year-long cough. A chest X-ray and CT scan were ordered right away and that’s when the truth emerged: a six-centimeter tumor and a diagnosis of stage 4 ALK-positive lung cancer.
Interviewed by: Carly Knowlton Edited by: Chris Sanchez
Laura’s treatment for ALK-positive lung cancer initially focused on targeted therapies called tyrosine kinase inhibitors or TKIs. Laura cycled through several options, always balancing side effects against her quality of life. “If this is what my life is going to be like… it isn’t worth it,” she recalls, after struggling with the severe side effects of her first TKI. (Editor’s Note: TKIs work by blocking tyrosine kinases, enzymes that may be too active or may be found at high levels in some types of cancer cells. Blocking tyrosine kinases may help keep cancer cells from growing.)
Encouraged by her physician to prioritize what mattered to her, Laura took breaks, joined a clinical trial, and ultimately found a better fit with her current medication. “Patients should advocate for what works best; if side effects or treatments aren’t acceptable, speak with your doctor about changing things,” she says.
Laura’s ALK-positive lung cancer experience fundamentally shifted her identity and outlook. She speaks candidly about the grief and recalibration forced by advanced cancer, the evolving sense of self, and the acceptance of cancer as a chronic condition, if a life-defining one. Daily life is different, but Laura leans on support groups and prioritizes humor and connection.
“Given any type of tragedy, you either decide to learn from it, rebuild from it, or let it take you down,” Laura says. “And I think more of us decide not to let it take us down.”
Watch Laura’s video above, and scroll down to read through her edited interview transcript for more on:
Why you should advocate for thorough diagnostics if your symptoms persist, regardless of smoking history or age
How quality of life is essential; it’s valid to adjust or pause treatment if side effects outweigh benefits
How proactive support in the form of family, community, mental health, and provider relationships can transform even the hardest experiences
Why humor, connection, and redefining identity are key to sustaining hope and finding meaning
How Laura has learned to accept new limitations, embrace choice, and support others through lung cancer community groups
Name: Laura R.
Age of Diagnosis:
37
Diagnosis:
Non-Small Cell Lung Cancer (NSCLC)
Staging:
Stage 4
Mutation:
ALK
Symptoms:
Persistent cough
Fatigue
Bone pain
Treatments:
Targeted therapies: tyrosine kinase inhibitors (TKIs), including through a clinical trial
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I live in South Carolina. I was diagnosed in May of 2023 with stage 4 non-small cell ALK-positive lung cancer.
It’s changed a little bit since my diagnosis, but before that, I owned a small handmade jewelry business. I still own it, but I do that part-time now. What I do for fun is horseback riding. I don’t get to do it as much as I’d like, but hopefully more so in the future now.
I try really hard to be funny. Whether or not I am, I don’t know, but I think I’m funny.
My first symptoms and red flags
It was hard because I overworked myself. I was very focused on work. I should have gone in sooner.
The first sign was a cough that wouldn’t go away. I’d been coughing for almost a full year, but it wasn’t bad. It was just a little bit in the morning. Sometimes during the day, I wouldn’t cough at all. It was just in the morning. Sometimes the cough would produce phlegm, sometimes it wouldn’t. Some days it got better, other days it got worse. It was a persistent cough that didn’t go away.
Over the years before my diagnosis, I became more fatigued, but gradually. I was approaching my late 30s, and I wondered, “Am I just getting old? Why am I tired all the time?” I also had a lot of joint issues, not debilitating, but pains in my wrist. I complained to my doctor, and she prescribed arthritis cream. I was in my 30s and wondered if that was normal. She said, “Yeah, it happens to some people.”
Those were the main symptoms: joint pain, fatigue, but the biggest one was the cough. I was lucky to have a cough because where the tumor was located, it was close to a bronchial opening, so the tumor caused almost an obstruction. I was trying to cough it out, but you can’t cough out a tumor.
I didn’t go to the doctor immediately. I lived with it, hoping it would go away. I was self-medicating. I’d always had allergies, so I kept taking allergy medications, switching between Allegra and others, but nothing helped.
At my yearly checkup, I talked about arthritis and back pain. I brought up the cough, and the doctor was concerned. She asked if I was from a region where there are common fungal infections in the lungs. I wasn’t. She thought a cough that long was unusual, so she sent me for a chest X-ray at the VA. The X-ray found a tiny nodule a few millimeters across. They said it’s common with service members and ordered a CT scan to monitor the size. After the CT scan, instead of a six-millimeter nodule, it turned into a six-centimeter mass, which is very large. That started the diagnosis process in May 2023.
Finding my care team
My first care team was a whirlwind, but I have healthcare through the VA, so it was all covered.
They told me to see a pulmonologist. I was referred to Dr. Nicole Tanner at MUSC in Charleston. She is amazing. She made me feel comfortable. She showed me the CT scan and explained the next steps with biopsy and diagnosis.
The VA is attached to MUSC, so I’ve received excellent care, and everything moved quickly. Waiting two days for a phone call felt long at the time, but the diagnosis from primary care to biopsy was within two weeks. I was given a pulmonologist and an oncologist.
At the VA, you can get a second opinion, so I got recommendations for a local thoracic oncologist. I also researched and found a specific ALK-positive specialist.
My reaction to my diagnosis
The news was given to me over the phone, which was fine. After the CT scan, my primary care doctor called quickly and said, “We’re going to do this.” I asked, “Why do I need to see an oncologist? Could this tumor be something else?” She said, “No, unfortunately, it’s cancer.”
It took me by surprise. I Googled possibilities, but didn’t think it was cancer. I said, “There’s absolutely no way.”
It took me a long time to believe it. I don’t even know when I fully recognized I had lung cancer.
I am a nonsmoker. We all went through COVID and had coping mechanisms, but that was rare and not a daily thing. Cigarette smoke? No.
Being diagnosed and treated for cancer as a woman in your late 30s is intense emotionally, hormonally, and mentally, because you’re aging and things are changing.
You think about childbirth, not being young anymore, friends with kids… it’s difficult to cope with all at once. I had to slow down after the diagnosis. It’s way too much for anybody to take on by themselves.
You have cancer, you can’t do this or that, you have to take medication, and then side effects prevent you from doing things. It’s too much.
Genetic testing impacted my treatment options
We waited to get my PET scan results to stage me.
Since I wasn’t presenting as poorly as some, maybe because of my age, there was no need to start chemo until genetic results came back. The genetic results [ALK positive] gave good news; there was a targeted therapy for me.
I started first-line therapy with my first TKI two years ago. Now I’m on my third.
Surgery isn’t an option, since my cancer is stage 4 metastatic; it has spread to different areas. Some elect to have surgery, but for me, surgery isn’t curative, so it’s not an option.
My experience with TKIs, their impact, and side effects
The first TKI wore me down. I lasted about a year, but couldn’t handle the side effects physically or mentally. I felt worse than before I had cancer, and I almost gave up. My specialist said that no one would force me to take it, which was freeing. I took a break, but the cancer grew back.
Then Dr. Lynn at Mass General told me about a clinical trial with cutting-edge medication. It’s rigorously tested and the latest available. I got on the trial, but my liver couldn’t tolerate the medication, which is common. I had some side effects from the clinical trial drug, but it was much better than the first drug. I loved the medication and was sad to stop.
I stopped and started my third TKI a month ago, and I’m doing pretty well so far. Hopefully, this one will stick. The drug I’m on now has minimal side effects. I increased my dose after consulting with my doctor because I had no side effects and wanted to see if the higher dose would hold.
There’s no end to it; treatment keeps going. TKIs are not a cure but must be taken until they stop working. Monitoring is constant with CT scans every three months to check tumor size. If it stays the same, that’s good news. Residual cells never go away. Researchers are working on vaccines and cures, but it’s a long process.
I kept my care at Duke University Hospital, where the clinical trial was run and supervised by an ALK-positive specialist. Instead of returning to Charleston, I now see the ALK specialist at Duke.
My current work and support system
I’m doing jewelry part-time and have stepped back a lot. Having my own business is great because I can return when I want. The connections are still there, just fewer. I pick when to work.
I have a lot of friends. My recently made friend, Emily, now lives in Washington state and has helped a lot. My sister, my only family member, left before, and our relationship wasn’t good. The diagnosis didn’t improve things, but we worked hard to rebuild our relationship, and it’s gotten much better. That’s one good thing about cancer; it brought my sister and me closer.
The impact of cancer on my daily life
The first year was the hardest; the second year was also difficult, mostly in finding a new normal. It’s like grieving loss, scrambling to survive, and rebuilding. It’s completely overwhelming, but you either do it or you don’t.
I have to do it. With any tragedy, you either learn and rebuild, or let it take you down. Most decide not to be taken down.
The hardest moment I’ve faced so far was deciding to stop the first TKI. I was going through a lot, dealing with side effects, life changes, and reflecting on a year of medication with a worse quality of life. I’d basically given up and stopped medication.
When I spoke to Dr. Lynn, she said, “What are you doing? You don’t have to take it.” I didn’t know that.
I’m fortunate to have supportive friends willing to help whenever I need it. Mental health is very important for people with this diagnosis since it’s life-changing. Some people aren’t sure what to do. There are many who care and want you to fight.
My identity has completely changed because I will always carry cancer; there is no cure. I think about death every day, almost like a built-in ticking time bomb. Not that I expect to die tomorrow, but it’s always there. At the same time, I appreciate life and can do what I want, such as take medication or not.
Therapy experience and my quality of life
I was already in therapy before the diagnosis and continued afterward.
I learned to speak up and eventually switched therapists, which was the best decision. If you don’t like your therapist or aren’t getting better, get another one.
Quality of life is often overlooked in cancer care, but it’s crucial that patients aren’t tortured to death. For me, quality is more important than length of life.
Everyone’s priorities are different. Some want to live at any cost. I think this changes how care should be delivered.
If you don’t like your treatment, talk to your oncologist. There are usually other options.
Advocacy is vital because your life won’t get better until you ask for change.
My advice for others
You’re not alone.
One of the best things I did was find a support group online. A friend recommended it, and connecting with others who understand made a big difference.
We all go through similar things, though differently. Having that support group has helped a lot over the past two years.
Drea Finds Identity and Strength with Stage 4 ROS1+ Lung Cancer
Drea is a video journalist who was only 26 when she was diagnosed with stage 4 ROS1+ lung cancer. It came as quite a shock. She never imagined that a physically active, young non-smoker who had never had any health issues, could ever get cancer.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Drea’s story began in early 2023. She began to experience some strange symptoms, including a swollen ankle from an unexplained deep vein thrombosis or blood clot, odd bruising, extreme weight loss, and persistent shortness of breath. She went to the ER several times, had some urgent care visits, and also saw specialists, but was reassured that what she was experiencing was due to stress or other such causes. She started to doubt herself even as her health began to deteriorate. Eventually, she succeeded in having a CT scan done. It revealed a large mass in her lung. Further tests confirmed that she had stage 4 non-small cell lung cancer that had already spread to multiple locations.
Drea’s experience has convinced her that self-advocacy is key. She explains why we always need to trust our instincts. “If you feel deep inside that something’s wrong, keep pushing,” she advises. Because she was persistent, she eventually had comprehensive biomarker testing, which identified the ROS1 mutation. This discovery opened the door to life-extending targeted therapies.
Living with stage 4 ROS1+ lung cancer has helped Drea redefine survivorship. It’s not just about existing; it’s about living fully. The targeted therapies she’s having allow her to enjoy climbing, biking, beach days, and gardening. She’s open and frank about her ups and downs, and acknowledges the chaos and struggle of having to navigate cancer in her 20s. But she’s decided to treat each day as an opportunity by focusing on what she can control rather than agonizing over the “what-ifs.”
Cancer didn’t strip Drea of her identity. Instead, it’s added new layers. She’s not just a video journalist anymore; she’s also an advocate, connector, and source of hope for others. She shares her story openly to help more people realize that “anyone with lungs can get lung cancer,” and, by doing so, to break the stigma that lung cancer is a smoker’s disease.
Drea urges others to be their own best advocate, seek second opinions, push for biomarker testing, link up with patient groups for support, and, most importantly, give themselves grace. Watch her video for more on:
Her diagnosis at such a young age and how she became her own health advocate against all odds
Drea’s struggle to be heard before her stage 4 ROS1+ lung cancer diagnosis
How targeted therapies gave her her life back
Why Drea names her cancer ‘Carl’, and how humor helps her thrive
The advice she offers young people who don’t feel heard by doctors
Scroll down for the transcript of Drea’s video interview!
Name: Drea C.
Age at Diagnosis:
26
Diagnosis:
Non-Small Cell Lung Cancer
Stage:
Stage 4
Mutation:
ROS1
Symptoms:
Swollen ankle resulting from a deep vein thrombosis or blood clot
Mysterious bruising
Extreme weight loss
Persistent shortness of breath
Rattling sound coming from the throat while breathing
Treatments:
Radiation therapy
Chemotherapy
Targeted therapies
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
My name is Drea. I was diagnosed with stage 4 non-small cell lung cancer at 26.
When I first felt something was wrong
I first started feeling off at the beginning of 2023. It began with the DVT, which is a blood clot that resulted in a swollen ankle, and at the time, it didn’t make sense to me because there were no known injuries; I hadn’t fallen, I didn’t trip or anything. I had gone to urgent care, which then sent me to the ER, and then they discovered that it was for sure a blood clot, so they put me on thinners. Following that, I kept having these sorts of mysterious symptoms, among them just bruising up and down my body, and extreme weight loss. It felt like I was in a pit of despair. I felt like there was something off, and I don’t know how to describe that feeling. And I think throughout the process of 4 or 5 months, the symptom that started scaring me the most was the shortness of breath. I think by the time they came around, I had this really weird, awful, rattling sound coming from my throat. Google scared me when I googled that one up. The entire five months of these symptoms, I had gone to urgent care a couple of times, I had gone to the ER, I had seen a specialist, and I kept getting sort of brushed off, getting told, “You’re young, you’re probably just needing a little more rest, you’re probably just tired or stressed.” Cancer or any sort of serious disease was never really mentioned. But then I remember in May, going back to that same urgent care that months earlier had prescribed me an inhaler for the shortness of breath, that same urgent care doctor had finally ordered a CT scan.
He gave me a call, and there was a sort of newfound sense of urgency in his voice. He told me I needed to go to the E.R. immediately. There was a mass that was found in the scan, and it did not look good. So I just drove myself over across the street and got admitted to the E.R. That was my first hospital visit that resulted in, I think it was like a 7 or 8 day stay.
They ran a swath of tests. My blood counts came back, not looking great, but nothing to signal cancer. But it was the imaging that scared doctors the most. They had found this huge lemon-sized mass on my right upper lobe, and sort of nodules scattered across it. They ended up doing a PET scan, and that’s when they found that there was also cancer up and down my spine and pelvis, and not even my noggin was spared, unfortunately. So they knew right away that this was serious and that it was likely cancer. And so I think it was maybe on day 4 or 5 of that hospital stay that they got me in for a bronchoscopy, and then I got the news.
The moment everything changed
Getting told that I had lung cancer at 26, as a never-smoker, never picked up a cigarette, or none of that, was shocking. I did not understand how that could even be possible. I never knew that non-smokers got lung cancer. My dad died of lung cancer in his 40s. He was a very heavy smoker, so I doubt he had any sort of mutations. But because of his lung cancer death, I had made the choice early on that I would never pick up a cigarette. I wouldn’t vape because I saw what it did to others. But then to find out that that didn’t save me from lung cancer was a shock.
Ten out of ten, I would not recommend getting your cancer diagnosis in the E.R. It is awful. So take that with you wherever you go. Try to establish care with the primary care physician who knows you and your history, because getting my diagnosis in the E.R. was not pleasant, to say the least. I think I was there anywhere between 5 and 7 days. It was complicated because after I got that diagnosis, I got discharged. I got sent home with no oxygen for some weird reason. Here’s a metastatic lung cancer patient who has cancer across both lungs, up and down the spine, in her noggin, and she still got sent home with no oxygen. And I just didn’t have anyone to check up on me in the way that I would imagine others would have if they didn’t get their diagnosis in the E.R.. It wasn’t until my at-home nurse noticed that my breathing was getting progressively worse, and she told me to head back to the E.R., that they found that my situation was getting even worse. And so the second time I got admitted, I had to get an emergency blood transfusion and start traditional chemo right away, the very next day, and that was the day that my oncologist told me, This doesn’t work.
We might have to put you in hospice. Because at this point, we had not gotten the biomarker testing results back. And so that was when things finally hit me that this was serious, that I don’t have my youth, I don’t have my young age to rely on, and that something needs to happen. And so I remember lying in bed with my mom by my side at this point, just panicking internally. And that was when I decided to just start calling around to see if there was a comprehensive cancer center that would take me right away, because I did not want to be put in hospice.
I took my health into my own hands
Hearing the word hospice just rattled me to my core. I knew that I had to do something to get myself from getting buried six feet under, and so I started crawling around trying to see what the next best option was. What is an option that is more familiar with these rare types of lung cancers? At the time, I didn’t know that I had ROS1 because we were still waiting on biomarker testing. But the oncologist at the time said that it was very likely, given the fact that I never smoked and I’m so young. I started calling around to this one major comprehensive cancer center in Florida. It was right after that conversation with the oncologist, and I think the call rep could hear the shakiness in my voice because I was trying to talk through tears, just trying to see if there was any sort of openings in the immediate couple of weeks. After all, things were serious, and as soon as I was discharged, I needed to seek care elsewhere to see what other options I had. Luckily, the lady found me in an appointment, and I was able to get in on time. I think it was two weeks later, and that’s how I ended up at my second hospital.
Learning my biomarker
I was actually very lucky that my oncologist at the time knew that there was a specific subtype of lung cancers that tend to impact younger nonsmokers. And he happened to be working that day and saw my case, and he ordered comprehensive biomarker testing right away. I think I got the results after just a couple of weeks. I consider myself very lucky because if it weren’t for biomarker testing, I don’t think I’d be here today.
It allowed me to take targeted therapies, which have been shown to work well with my specific type of cancer. Targeted therapies in general have truly revolutionized what it means to be metastatic and living with lung cancer. And it’s just unfortunate that there are people across this country, across the globe, who are not afforded that option because they’re doctors, or the hospital care system just may not be aware that comprehensive biomarker testing is a thing.
I was kind of all over the place, still trying to process the news. But when my oncologist at the time mentioned that comprehensive biomarker testing could open the window to newer forms of treatments, I was like, all right, let’s do it. And then when I finally got the news and I saw that I had ROS1, which tends to impact, I think it’s like 2 to 3% of all non-small cell lung cancer cases, I was like, great, so here’s to celebrating having a mutation, I guess, let’s do it. It was an interesting, interesting time. A couple of weeks later, my brother was doing some research on my behalf, and he found this incredible nonprofit advocacy group that does a lot to build community and share resources for people with ROS1. They’re called the Ross Wonders, and they have just been a godsend to me. They showed me how to be a better advocate for myself, they’ve connected me with those long-term cancer survivors, and they’ve shown me that you can still live a long and fulfilling life, although you have metastatic lung cancer.
My treatment plan
As soon as we found out that I had ROS1, it became very apparent that we had a better option than that platinum-based chemo that I had already gotten one round of. At the time, I had also gotten radiation. But there has been such incredible research out there about these targeted therapies that the best course of action at that time was to just stop chemo and go on a TKI pill, and so I was put on my first drug.
I got about three years of pretty great response, pretty great quality of life on what I like to call my beloved drug, and it was very good to me; it kept my cancer under control, and I was able to wrangle my control. And I was able to wrangle my life back from cancer in a way that I never envisioned, because I knew nothing about targeted therapies and what sort of quality of life that might have meant. It was great for me for about three years. Unfortunately, earlier this year, I had to switch to another drug, but thankfully, things have been going pretty well on this second TKI as well.
It’s gotten a pretty good control on some of the new lesions that have popped up, and I’m still able to live a relatively normal life. I have a couple of annoying symptoms, but they’re still manageable.
Everyone’s different. Everyone’s going to react differently to each drug. We may have the same cancer with the same lesions and other comorbidities, but we may still react differently to whatever drug we’re taking. I consider myself pretty blessed because I seem to be a fairly good responder to TKIs. I don’t deal with any sort of debilitating symptoms. I know that that’s not the case for a lot of other ROS1ers; unfortunately, I wish it were. But so far, everything that’s been thrown at me has been manageable. I’ve been able to get back to my old life. I climb a lot, I bike, I’m able to take my dog on long walks, I’m able to be out in the sun and garden, I’m a very big beach bum, true Floridian. And I have TKIs to thank for that.
How I feel about clinical trials
I will say a lot of people tend to fear the idea of clinical trials because they like to think, “I don’t want to be a lab rat, I don’t know what sort of outcomes I’m going to see if I join a clinical trial studying a very new drug.”
Editor’s Note: In cancer trials, no one is given only a sugar pill when an effective standard treatment exists. Instead, participants receive either the current standard-of-care treatment or the standard-of-care plus a new therapy being studied, and everyone is closely monitored for safety and benefit. Many of the oncologists we interview describe cancer clinical trials as "getting tomorrow's medicine today."
There are a lot of incredible treatments out there that are revolutionizing what it means to live with these sorts of subtypes of lung cancer, whether it’s ALK, EGFR, or ROS1, like what I have. These therapies are exciting; they’ve shown a lot of great promise. A lot of times, these drugs are being tested for years in a clinical trial setting, and there is early data that you can glean from and decide if that’s a good option for you at the time. If I’m ever at a point where I do run out of TKIs, I will gladly volunteer for science and to help the next lung cancer patient get access to even better drugs in the future.
How I’m navigating my diagnosis and being young
Navigating cancer in your 20s and 30s is incredibly messy; it is chaotic. It is a roller coaster you go through, so many loops, it’s complicated.
I’m not going to deny that, it’s not an easy feat. I’m metastatic, which has caused me to grow up in a lot of different ways. For people who have been diagnosed at earlier stages, it is life-changing. Just because treatment wraps up and your hair grows back and you’re in remission or you’re cured, does not mean that your life goes back to normal or that you’re even the same person you were the day that you were diagnosed. So it is complicated, and I try to remind every cancer patient that I meet to just give themselves grace. It is a work in progress. I am three years out, three years into survivorship, and I am still learning what it means to live with metastatic cancer, and to live each day as if I’m living, not as if I’m dying.
Honestly, I try to just make the most out of whatever time I have left. If it is three months, if it is three years, if it is six years. Let’s pray for six years, I will take six years happily. I like to treat every day like a new day.
And if I’m having a crappy day or just the type of day where you just don’t want to get out of bed and you’re just stuck doom scrolling on your phone, I try to remind myself that tomorrow is a new day.
I used to just get stuck on all the what-ifs. Like, what if I spoke up sooner? What if I pushed for answers sooner? Would my life have been different? Would my cancer have been when it was stage 2 or 3 instead of stage 4? But at the end of the day, what does that do for you? What are you thinking about, the crappy cards that you were dealt day after day? What does that do for you? And so I try to just remind myself to focus on the things that I can control. And that is what my life moving forward is going to look like. Whether that’s for three months, three years, or however long, I know that I just want to make the most of each and every day.
“Hope” is a complicated word for me
I am cautiously optimistic that I will be able to get a good chunk of time out of whatever TKI lines are currently available. And I hope that I will be able to respond well to those therapies until the next best thing comes out.
And there are a lot of really new and exciting TKI drugs currently being studied in clinical trial settings. I try to talk to my cancer from time to time and just be like, “Oh, Carl, can you give me three years of peace, until that next best thing comes out?” I know that next year there’s going to be another TKI out in the market, or at least that’s what my oncologist has said, and what we hope is that it’s going to get approved by the FDA. I try to count my blessings every day and try to beg Carl from time to time to just behave for a little longer, and just go from there.
I like to view my cancer as an insidious roommate that just does not pay rent, that has been uninvited. What is the most awful name you could give that imaginary roommate? And the first name that came to mind is Carl, so his name is Carl.
Carl used to be lemon-sized, around five centimeters. I think he’s down to two centimeters, and he’s been stable.
He’s been behaving this way this whole time. It’s just that I get random lesions outside of the primary tumor that pop up, but for the most part, he’s been good.
What I want others to know
My last piece of advice would just be not to take a lot of stock in survival statistics or prognosis. My first oncologist told me I likely had just three months to live; lo and behold, I’m still here. Three years later, and I’m still going strong, I’m still kicking.
And I hear it all the time in the lung cancer community, fellow patients who have been given months to live, a year to live, and they’re still doing well. And while that may not be true for everyone, there is reason to remain cautiously optimistic because newer therapies are coming out every couple of years, and science is advancing in a lot of incredible ways.
I want people to know that anyone with lungs can get lung cancer. You do not have to be smoking eight packs of cigarettes a day to get lung cancer. I was 26 when I was diagnosed, and I have not once picked up a cigarette or a vape or any of that stuff, but I still got diagnosed with stage four non-small cell lung cancer. It is something that is happening to more and more young people, year after year, and we don’t know why. It’s terrifying.
If you’re feeling out of breath, if you’re seeing a lot of troubling symptoms that don’t make sense, whether it’s back pain and then this weird rattling sound coming from your throat, and you’re getting told by your doctors you’re fine, it’s probably pneumonia or asthma, here’s an inhaler, don’t listen to them. Seek better care and keep pushing for answers, because lung cancer cases amongst nonsmokers are going up. And at the end of the day, you’re going to be your own best advocate.
Symptoms: Swollen ankle resulting from a deep vein thrombosis or blood clot, mysterious bruising, extreme weight loss, persistent shortness of breath, rattling sound coming from the throat while breathing
