Author: Chris Sanchez

Categories
Chemotherapy Colectomy Colon Colorectal Metastatic Patient Stories Surgery Targeted Therapy Treatments

“It Hit Me Like a Brick Wall”: Kailee’s Stage 4 Colorectal Cancer Story

Kailee O. stage 4 colorectal cancer

“It Hit Me Like a Brick Wall”: Kailee’s Stage 4 Colorectal Cancer Story

Colorectal cancer during pregnancy is a rare and deeply challenging experience, one that Kailee knows about firsthand. Diagnosed at 34 while pregnant with her second child, Kailee’s experience challenges many assumptions about who colorectal cancer affects and what symptoms matter. 

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Kailee describes her earliest symptoms: a sensitive stomach she took as “normal,” bleeding during bowel movements (which she was told was likely due to hemorrhoids), and persistent fatigue. These signs intensified quickly during her second pregnancy and were accompanied by abdominal and back pain. Like many busy parents, she prioritized her family over her own symptoms, a decision she now reflects on with candor: “I put myself on the back burner, which I regret.”

Kailee O. stage 4 colorectal cancer

A turning point came through genetic testing for Kailee’s pregnancy, which led to unexpected results and concern from her care team. She was quickly referred for advanced genetic counseling and imaging, which ultimately revealed a mass in her colon and lesions in her liver and lungs. The diagnosis was advanced, stage 4 colorectal cancer, requiring urgent and complex decisions. Kailee credits her support network, her mother’s care, and her coach’s drive for helping her face the toughest treatment choices, such as pursuing chemotherapy while pregnant.

Throughout her colorectal cancer experience, Kailee’s resilience is anchored in sports, coaching, routine, family, and peer support. She continues treatment with hope, balancing motherhood, business ownership, and rounds of chemotherapy. Her reflections on positivity, advocacy, and adapting to life’s curveballs offer wisdom beyond medicine: “It’s a marathon, not a sprint. With positivity and perseverance, things can happen.” 

Kailee’s story shines a light on the importance of listening to your body, advocating for yourself, and knowing that no one is ever truly alone with colorectal cancer. Watch her video above and browse the edited transcript of her interview below to learn about how:

  • Listening to your body and not dismissing early symptoms can make a meaningful difference in seeking timely care
  • Demanding answers and advocating for yourself in medical settings is essential, even if you have to push for multiple opinions
  • Support from community, family, and peers deeply influences resilience during a colorectal cancer experience
  • There is no “right” path for complex decisions during cancer, especially when parenting and family are involved
  • Transformation is possible: Kailee’s experience shifted her focus from coaching youth basketball to embracing each day with her children
  • Name: Kailee O.
  • Diagnosis:
    • Colorectal Cancer
  • Staging:
    • Stage 4
  • Age at Diagnosis:
    • 34
  • Mutation:
    • BRAF V600E
  • Symptoms:
    • Sensitive stomach, sometimes leading to vomiting after eating
    • Bleeding during bowel movements
    • Persistent fatigue
    • Back pain
    • Abdominal pain
    • Anemia
    • Significant symptom flare-up during second pregnancy
  • Treatments:
    • Surgery: colectomy
    • Chemotherapy
    • Targeted therapy
Kailee O. stage 4 colorectal cancer
Kailee O. stage 4 colorectal cancer
Kailee O. stage 4 colorectal cancer
Kailee O. stage 4 colorectal cancer
Kailee O. stage 4 colorectal cancer
Kailee O. stage 4 colorectal cancer

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

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

Transcript of Kailee’s Interview
  1. My name is Kailee
  2. Navigating an athlete’s mindset after my stage 4 colorectal cancer diagnosis
  3. My early symptoms and missed signs
  4. My second pregnancy revealed that I had cancer
  5. The moment everything changed
  6. Navigating my colorectal cancer treatment options
  7. Life in active treatment
  8. Finding community and support
  9. Reflections on my colorectal cancer diagnosis and staying positive
  10. What I want others to know

My name is Kailee

I was diagnosed with stage 4 colorectal cancer.

So my grandpa, Bob McDonald, is a legendary basketball coach. He was from Chisholm, Minnesota. If anyone who has ever followed Minnesota basketball has heard of Chisholm, Minnesota, and their wonderful, amazing basketball teams, you go into their gymnasium and it kind of feels cozier. He was a coach there for over 50 years. He has over 1,000 wins. My dad, who is the oldest of six, also played basketball. My dad has three brothers and two sisters. They all played basketball, and they all also became coaches, following in the footsteps of my grandpa. My dad was the high school boys’ basketball coach in Cambridge, and still is. We grew up going to games. My mom will say that my siblings and I were all born on a game night. My dad coached and then would come to the hospital. I actually remember my younger brother being born because I was six years old; my dad brought us to the game, my mom was at the hospital, and we had the cheerleaders watch us until the game was over, then we went home. I ended up playing basketball at a young age. My brothers played in high school and actually played in college. I played four years of college basketball at UW-Superior. I loved every minute of it. It was a great experience. I can relate a lot of my life to being a college athlete. I think it prepared me a lot for what has happened in my life and set me up for success. It was a huge part of my life growing up.

After playing college basketball, I ended up coaching at a local high school. I coached there for 12 years. This will be my first season not coaching as an assistant coach, and I loved it. I loved giving back to the game, working with young females in our community. Being able to connect with them, teach them, and mentor them was really important and very fulfilling for me.

Navigating an athlete’s mindset after my stage 4 colorectal cancer diagnosis

When I was first diagnosed, it hit me like a brick wall. I never would have thought that at 34 years old I’d be dealing with this type of thing. Especially as a former athlete, you just kind of expect things to make sense with your body. 

I knew something was wrong. I wasn’t feeling well, was tired all the time, and finally, getting that diagnosis kind of made sense of all the feelings I had. I was having pain I’d never felt before. I worked out my entire life and never felt pain like this. 

At one point, it was relieving to get a diagnosis to explain what was happening. At another point, it was definitely emotional; something I wasn’t expecting and wouldn’t wish on anyone else.

My early symptoms and missed signs

I’ve always considered myself to have a sensitive stomach. That was my first symptom. I would eat certain foods, and my stomach wouldn’t agree with them. I’d need to use the restroom right away. I thought, “I need to eat better.” When I ate good things, I didn’t have those symptoms. Actually, when I was pregnant with my first child, I had some bleeding when passing bowel movements. As a first-time mom, my red flags were up with every symptom. 

I called my OB’s hotline. They had me come in, checked me out, and said hemorrhoids are super common in pregnancy. I trusted my medical professionals and just accepted it. That bleeding continued, but I was busy, so I put myself on the back burner, which I regret. 

When I was pregnant with my second, my symptoms really started flaring up. It felt like right when I got pregnant, the signs started, and they happened quickly. I was experiencing bad back pain, abdominal pain, and my sensitive stomach intensified; I’d eat something and end up vomiting.

During pregnancy, I attributed the vomiting to morning sickness, but I’d never felt severe stomach pain after eating, which led to vomiting. As my pregnancy progressed, symptoms worsened; worse back pain, worse abdominal pain. Having had a previous C-section, I thought my abdominal pain might be from that. I asked my friends, and some said they had abdominal pain, but not what I felt. I was referred to a chiropractor for my back, but got no relief. Eventually, I realized something was not right.

Throughout this experience, I’ve learned that it’s always important to listen to your body and pay attention to its signs. Your body gives signs that something is wrong. As moms, we can think we’re overreacting; “I’m fine.” That’s always been my mindset. I’ve never been one to go to urgent care unless things are really bad. It’s important to listen, to speak to your medical providers, and always push for answers. If you’re not getting relief or your questions aren’t answered, push for those answers.

My second pregnancy revealed that I had cancer

We decided to do the NIPT genetic testing. It’s a blood test usually offered during pregnancy. With our first, we got it done at 12 weeks. Now, it’s offered as early as nine weeks. My husband and I wanted to find out the gender ASAP, so I went in at nine weeks, on Black Friday. The results took about two weeks. With all my symptoms, this pregnancy felt so different from my first. I was sure it was a boy.

I got the results while working out, called my husband, opened the results on my chart, and it came back “not reportable.” I messaged my OB, who said it was probably too early, low fetal fraction, and to come back in a week. At 11 weeks, I did the test again. Two weeks later: “not reportable” again. At this point, I was worried. I Googled, which only made it worse. We were referred to genetic counseling and did another test through a different lab right before Christmas. After waiting about a month, I got a call from a genetic counselor: “Do you want to know the gender?” Yes; it was a girl, but she had triple X syndrome, which is usually not serious, sometimes associated with learning disabilities or height differences.

A few days later, my main genetic counselor called. She had gotten a call from the lab: “a lot more genetic abnormalities” that don’t show up on the regular test. The lab wondered if these came from me, not the baby. They wanted to release the results. I was emotional and had to play in a basketball game after that call, putting on a brave face. That Monday, we met with the high-risk OB. There were 19 pages of genetic abnormalities. They said something was going on with me.

When I found out it was likely me, not the baby, with the abnormalities, I called my husband immediately. I was home alone, very emotional. I called my mom, she’s my best friend, and told her [what had happened]. She agreed to come up for my appointment the next Monday. 

I was scared and did another deep dive on Google. My aunt is a NICU nurse practitioner, and she reassured my mom and me that there are lots of possibilities, so we just had to wait and see. That helped me think positively, “I’m going to be okay,” I thought, and just waited for the follow-up.

The moment everything changed

After those genetic results, we did an ultrasound to check the baby. I had a mass directly in front of my uterus, which had looked like part of my baby bump but was actually the mass. They scheduled an MRI for the next day. 

On Wednesday, I got the MRI, and my MFM called that afternoon while my mom was still with me, thankfully. She said, “Kailee, we see cancer, and it looks advanced.” I looked at my mom; we were in disbelief. I felt like I would pass out; my life flashed before my eyes. It was the worst moment of my life, a feeling I never want to experience again, or want anyone else to. I felt so bad that my mom had to hear and feel my emotions, but I was also grateful she was there. 

I learned there was a tumor in my colon, spots in my liver, and spots in my lungs. At that point, I didn’t know it was stage 4, but once I Googled “colon cancer in liver and lungs,” stage 4 came up immediately. I saw all the percentages for life expectancy, and I broke down. I had just turned 34. 

The thing that broke me the most was thinking about my kids and the possibility of not being there for them.

Navigating my colorectal cancer treatment options

Once I was diagnosed, my dad came up after basketball practice. My immediate family gathered, and I had to break the news to my brothers and everyone, which was awful. In Duluth, we have a great hospital system, but Minnesota is also home to Mayo Clinic, so we decided to go there. We got an appointment for the following Monday. 

At Mayo, my first appointment was with someone in the gastro/liver specialty since I wasn’t officially in oncology yet. The first thing was biopsies of my colon and liver to see if they were the same cancer. After all that, I finally met with my oncologist, a world-renowned doctor. He gave us two treatment options: a less aggressive option if I kept the baby, or a more aggressive one if I terminated the pregnancy. It was the worst thing I’ve ever had to go through, choosing between myself and my baby.

At 19 weeks, we had an anatomy scan. The baby looked amazing; big, growing, no concerns. Despite not wanting to talk about abortion, I was at my lowest of lows and couldn’t put myself through any more. I felt good enough and told them I wanted to keep the baby and do treatment while pregnant. They said, “We don’t know what will happen. We can give you chemo, but it could put you into early labor.” My biggest fear was early labor and the baby not surviving. I was able to do four rounds of chemotherapy while pregnant. 

She’s here. Six months old, chubby, happy, the best baby ever. There wasn’t a right choice, but I don’t regret my decision.

Being pregnant and going through this was tougher on my body. I was growing a baby, more tired, chasing a toddler. Looking back now, it’s all foggy. Everything was new, from chemo to treatment as a whole. I had a winning mindset: “I’m going to do this chemo, feel good, do everything I can.” 

I’m on a different, more aggressive treatment now, but I don’t see major differences between being pregnant or not, other than the physical exhaustion.

Life in active treatment

Currently, I have my 18th round of chemo next week. I’ve done 17 rounds: four during pregnancy, I had my baby, and then 13 more. 

I do chemotherapy infusions every other week, get sent home with a 46-hour pump (which I do not recommend), and take oral chemo daily; that’s specific to my cancer mutation. 

The targeted treatment has significantly reduced many of my tumors, and we’ve seen great results. The plan is to continue, hoping some tumors get small enough for surgery. Right now, I don’t qualify for surgery, but the goal is to keep shrinking, get rid of things, and keep going.

Since my treatments are every other week, my life feels like a week on and a week off. I’m a business owner, so I’ve kept working throughout treatment, which is good. I love what I do, and it gets my mind off things. During my chemo weeks, my mom comes and stays for about four days to help with the girls and the house. On my good weeks, we operate as normal. I feel good, just might need a nap here or there. We try to live a normal life, do fun things, travel more, and spend as much time as we can with family.

When first diagnosed, I wondered if I should pull my kids from daycare to keep them with me, but we decided to keep their routine. Keeping things normal for them is important. My two-and-a-half-year-old knows when it’s “Mommy’s chemo week.” She knows I have an “owie,” sleeps a lot, and comes in for cuddles. It’s tough that she’s starting to notice, but we try to do things we always did and keep life as normal as possible.

Finding community and support

Sports give you a sense of community. I’ve met so many people through coaching: former players now adults, people having kids, and those coming back into the game. Many have been so supportive throughout my journey: benefits at games, special cancer nights, and more. Coaching and involvement in basketball have brought tremendous support and people reaching out just to say they’re thinking of me and praying for me. It means a lot to hear from them.

I’ve connected with two other girls my age diagnosed with stage 4 colon cancer via NIPT while pregnant. One is from Louisiana. We connected on Facebook, talked, and she told me all she’s been through. My mother-in-law had heard of someone in Minnesota with a similar story. Now I’m in a group chat with four young women, all with different treatments, fighting the same disease. 

It’s so helpful to compare notes, ask questions, and support each other. My friends and family are great, but having that peer support is amazing, people who really know what this is like.

Reflections on my colorectal cancer diagnosis and staying positive

It’s not something I ever expected, being this young and diagnosed with colon cancer. I’ve met many young people with it, even younger than me. Actually, everyone in my group chat is younger, and I’m almost 35. It just shows that cancer can affect anyone, whether old, young, rich, or poor. Anyone. It’s important to watch for symptoms and advocate with your medical professionals if you have concerns.

It’s so important to go in with a good mindset. I speak with a therapist, which is very helpful. I told her, “Am I crazy for thinking I can beat this?” She said, “You’re an athlete; would you ever go into a game thinking you’re going to lose?” If you do, you lose. 

As a coach, I always tell my girls to think they will win. That stuck with me. Having a positive mindset is key. Days are tough; sometimes I get bad results, sometimes I get good ones. 

It’s a marathon, not a sprint. With positivity and perseverance, things can happen.

What I want others to know

My biggest advice is to advocate for your care. Whether you’re in treatment, about to be diagnosed, or having symptoms, always advocate for yourself and for what you deserve. 

I’ve heard stories of people reaching remission just by pushing, getting second, third, fourth, fifth opinions. Just because one person says no, doesn’t mean the next won’t say yes. 

Always advocate for yourself, push for what’s right, and fight for answers.

Kailee O. stage 4 colorectal cancer
Thank you for sharing your story, Kailee!

Inspired by Kailee's story?

Share your story, too!

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Categories
Chemotherapy Immunotherapy Patient Stories Radiation Therapy Rhabdomyosarcoma Sarcoma Soft Tissue Sarcoma Treatments

Kate Navigates College and Stage 4 Rhabdomyosarcoma: A Story of Hope

Kate J. rhabdomyosarcoma

Kate Navigates College and Stage 4 Rhabdomyosarcoma: A Story of Hope

Just as she was entering her sophomore year at Indiana University, Kate’s life shifted in an instant. What began as a subtle, easily dismissed ache on the lower right side of her body soon grew into something she couldn’t ignore. A series of scans and referrals brought her to Siteman Cancer Center, where she learned the diagnosis no one her age expects to hear: stage 4 rhabdomyosarcoma, a cancer commonly found in the budy’s muscles. From that moment on, everything changed. Her academic plans, her routines, and her daily life were all suddenly rewritten.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Supported by her family, friends, and a dedicated college community, Kate charted her rhabdomyosarcoma treatment over fifty-two weeks of chemotherapy and radiation. “My doctor told me not to take classes, but I needed something to keep my mind busy. I’m now on track to graduate on time,” she shares. 

Kate J. rhabdomyosarcoma

Kate’s experience was marked by learning to navigate social interactions as a sorority member post-treatment and finding motivation through small but meaningful acts of kindness. Notably, a freshman’s positive comment about her short hair and an unforgettable shoutout from Justin Timberlake in Dallas fueled her resilience.

The disease’s response to treatment shifted the path again when, after apparently successful therapy, scans revealed new cancer spots. Kate began another round of treatment, determined to reach stability even when remission seemed unlikely. Her optimism persists. “I know there’s still hope,” she affirms.

Through open dialogue about her diagnosis, forming connections with other young survivors, and fostering awareness, Kate embodies the expression, “You’re stronger than you think.” Her story is a testament to adaptability, support, and the power of patient-led advocacy for this rare kind of sarcoma. 

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

  • Listening to your body and recognizing subtle symptoms like unexpected discomfort can be critical to early diagnosis and timely treatment
  • Academic and social support can empower patients to remain connected and resilient during extensive treatment
  • Small acts of kindness, such as reinforcement from peers, can profoundly impact confidence and well-being
  • Treatments change and setbacks occur, but maintaining hope and adaptability fosters strength and stability
  • As Kate says, it’s okay not to be okay. Every patient deserves validation, rest, and self-compassion as part of their experience
  • Name: Kate J.
  • Diagnosis:
    • Rhabdomyosarcoma
  • Age at Diagnosis:
    • 20
  • Staging:
    • Stage 4
  • Symptoms:
    • Discomfort on the lower right side of the body
    • Pain when sitting down
  • Treatments:
    • Radiation therapy
    • Chemotherapy
    • Immunotherapy
    • Clinical trial
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma
Kate J. rhabdomyosarcoma

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

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

Transcript of Kate’s Interview
  1. My name is Kate
  2. My first symptoms
  3. How I shared the news
  4. What my treatment looked like
  5. Returning to school
  6. The Justin Timberlake moment
  7. The cancer came back
  8. Navigating hope, college, and the future
  9. Being open about my diagnosis
  10. How I’ve found support
  11. What I want people to know

My name is Kate

I was diagnosed with stage 4 rhabdomyosarcoma in July 2023.

I’m in my senior year of college at Indiana University. I was in my freshman year before I got diagnosed. I joined a sorority that’s big on philanthropy, which I love, and we do a lot of fundraising for breast cancer.

I grew up dancing for about 15 years, from age three to 18, so I still stay connected with the dance community. I’m a triplet, with siblings who keep me going, plus an older sister who’s three years older than us. We’re a busy household with three dogs, and our home is full of life.

My first symptoms

After my freshman year, around Memorial Day weekend, I started feeling something off near the right side of my lower body. It was uncomfortable to sit down, but I thought it was something minor, like a hemorrhoid or an ingrown hair.

When I went to my doctor for a routine physical, I mentioned it. He referred me to a rectal surgeon, which sounded strange for what I was feeling. I didn’t go and instead saw an OB-GYN, who ordered a CT scan. The scan led to a referral to a gynecological oncologist, a term I didn’t even know at the time.

That appointment took a month to get, and during that time, things got worse. When I finally had a PET scan, they told me to come to the hospital immediately. I remember walking in and seeing the words “Siteman Cancer Center.” I still didn’t think it was cancer.

Then the doctor’s fellow came in and told me that I had stage 4 rhabdomyosarcoma. My first reaction was to laugh. Then I cried, after seeing my dad cry first. My mom and dad were heartbroken. I was only 20. 

Later, I learned that my parents already knew the diagnosis before I did; they were told over the phone.

How I shared the news

I told my closest friends in a small group chat we call “Crazy Eight.” I didn’t want them to feel sorry for me, so I framed my message as something inspiring, our “new fight.” 

The support I received was unbelievable, both from my friends and online.

I posted on Instagram and gained over 3,000 new followers in a week, all sending encouragement rather than pity.

What my treatment looked like

My treatment plan included 52 weeks of chemotherapy and radiation. The idea was to take it semester by semester. My doctor initially wanted me to take a break from school, but I wanted to keep my mind busy.

I started with general education courses and discovered I could manage them. My professors were understanding and gave me flexibility when needed.

I’ve been able to stay on track and will graduate on time.

Returning to school

I returned for my junior year after finishing treatment and rang the bell in July 2023.

Moving back into the sorority house with 100 girls in August was a culture shock, especially since I was still at high infection risk. Adjusting socially was hard, too.

Being 21, surrounded by parties, meant learning to say no. My body couldn’t handle alcohol like before. 

Some people didn’t know my story, and I worried about how I looked with short hair. But a freshman told me one day, “You look beautiful; I love your haircut,” and it made my whole week.

It’s also amazing that Greek Life at Indiana University came together and raised some money to help me out. For the first time, it felt like I was finding my footing again.

The Justin Timberlake moment

One incredible experience was meeting Justin Timberlake. 

I’m from a big hockey family, and my brother’s connection led to JT’s manager hearing my story. Justin filmed a personal video inviting me and my whole family to any of his tour stops.

We went to Dallas in June 2024, a month before my bell-ringing. He gave me a shoutout mid-show, saying, “She’s due to ring the bell in one month.” 

He treated us like friends, asking for updates and wanting to see the ringing video.

The cancer came back

In November 2024, a scan revealed a small neck spot. Initially, my doctor thought it might be a false positive, but by December, new spots appeared. A biopsy confirmed that the cancer was back.

I restarted chemo in January, plus immunotherapy, which was new to me. When a trial drug failed, I switched back to a previous chemo regimen and added radiation. After the October 2025 scans, my doctor said this would be hard to treat and that remission might not be likely.

Still, I feel hopeful. Treatments keep evolving, and my body has always responded well. My current goal isn’t just remission. It’s stability and strength.

Navigating hope, college, and the future

I take things day by day. 

My college experience looks different, but I’ve found my new normal. My friends keep me included through phone updates, and I visit when I can.

I even have an internship in the medical device industry now. The company has been flexible with my treatment schedule. They told me, “We can work with you.” That kindness made me feel like I belong.

I am a totally different person compared to who I was just two years ago, but in a good way. I’ve matured and learned a lot, and honestly, that’s what makes me glad that these things happened. I wouldn’t be who I am today if I hadn’t been diagnosed with rhabdomyosarcoma.

Being open about my diagnosis

I’ve always been open about my story. When people ask questions, even tough ones, I’d rather they learn than make assumptions.

Only once did someone cross a line, asking, “How much longer do you have to live?”

I told them, “My doctor hasn’t said anything, so as far as I know, I have as long as you do.”

How I’ve found support

My cancer is pediatric-type, but I’m treated on the adult side, so there aren’t many people my age with sarcoma. Still, I’ve met one girl who became a close friend. We both relapsed and remind each other that we can do it again.

I’ve connected with other young cancer survivors through university, social media, and across state lines. 

There’s even another triplet in St. Louis who’s my age and who has a different sarcoma. It’s such a small world.

What I want people to know

Our family motto is “Live every day like it’s your last.” So you have to keep pushing and enjoy your life.

For those who might be watching my story, I want them to know that it’s okay not to be okay. Bad days happen even when you try to smile through them. Let yourself rest and feel those emotions. 

You’re stronger than you think.

Kate J. rhabdomyosarcoma
Thank you for sharing your story, Kate!

Inspired by Kate's story?

Share your story, too!

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Treatments: Surgeries (cholecystectomy, Whipple), chemotherapy (Gemcitabine and Taxotere)
Categories
ALK Lung Cancer Metastatic Non-Small Cell Lung Cancer Patient Stories Treatments

Laura’s Stage 4 ALK+ Lung Cancer Experience Balances Treatment and Quality of Life

Laura R. ALK+ lung cancer

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.)

Laura R. ALK+ lung cancer

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
Laura R. ALK+ lung cancer
Laura R. ALK+ lung cancer
Laura R. ALK+ lung cancer
Laura R. ALK+ lung cancer
Laura R. ALK+ lung cancer
Laura R. ALK+ lung cancer
Laura R. ALK+ lung cancer
Laura R. ALK+ lung cancer
Laura R. ALK+ lung cancer

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

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

Transcript of Laura’s Interview
  1. My name is Laura
  2. My first symptoms and red flags
  3. Finding my care team
  4. My reaction to my diagnosis
  5. Genetic testing impacted my treatment options
  6. My experience with TKIs, their impact, and side effects
  7. My current work and support system
  8. The impact of cancer on my daily life
  9. Therapy experience and my quality of life
  10. My advice for others

My name is Laura

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.

Laura R. ALK+ lung cancer
Thank you for sharing your story, Laura!

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Laura R. ALK+ lung cancer

Laura R., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptoms: Persistent cough, fatigue, bone pain

Treatments: Targeted therapies (tyrosine kinase inhibitors or TKIs, including through a clinical trial)
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Shauna D. stage 4 ALK+ lung cancer

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Symptom: Persistent dry cough following a cold
Treatments: Targeted therapy (tyrosine kinase inhibitors), radiation therapy
Allison Z. stage 4 ALK+ lung cancer

Allison Z., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptom: Severe back pain
Treatments: Targeted therapy (ALK inhibitors), radiation therapy
Kathrin W. stage 4 ALK+ lung cancer

Kathrin W., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptoms: Weakness, decline of performance in sports, depression, pain in left foot
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Stephanie W. feature profile

Stephanie W., Non-Small Cell Lung Cancer, ALK+, Stage 2B



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Categories
Carcinoma Ex Pleomorphic Adenoma Head and Neck Cancer Lumpectomy Neck dissection Patient Stories Radiation Therapy Surgery Treatments

Survivorship and Song: John Rediscovers Joy After a Rare Salivary Gland Cancer

John C. carcinoma ex pleomorphic adenoma

Survivorship and Song: John Rediscovers Joy After a Rare Salivary Gland Cancer

On most days, John thinks of himself first as a professional opera singer. He is a man who measures time in rehearsals, warm-ups, and the joy of the musical world he lives in. So when a small bump near his jaw appeared during a season of renewed health, it barely registered as a concern. No one, including his doctor, was envisioning a rare salivary gland cancer. His doctor scheduled a surgery and routine biopsy to clear it up. But a few days after the procedure, John’s world shifted when he heard the news he never imagined would follow something so ordinary. “It’s cancerous.”

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez & Jeff Forslund

That moment touched off an unexpected and disorienting period. John, who had survived a heart attack and prided himself on resilience, suddenly found himself in the world of rare cancers. More testing and consultation with a specialized care team confirmed the diagnosis: salivary gland cancer (carcinoma ex pleomorphic adenoma), a type of head and neck cancer where cells in a long-standing benign tumor convert to cancer. The surgical team’s quick response led to neck surgery to detect if lymph nodes were cancerous, with the fortunate news that the cancer hadn’t reached his lymph nodes. “They wanted to act fast because it’s a high-density cancer, which can sometimes metastasize and be difficult to treat,” John recalls.

John C. carcinoma ex pleomorphic adenoma

Radiation treatment was intense, requiring 33 daily sessions. The realities of daily therapy, loss of taste and smell, and the psychological barriers of eating purely for survival changed John’s daily habits and challenged his sense of well-being. Still, his career as an opera singer and choral performer went uninterrupted, a testament to John’s determination and vocal discipline.

Throughout his salivary gland cancer experience, John leaned heavily on his boyfriend, friends, and his wider musical community. He highlights Gilda’s Club and other support organizations as critical for emotional and practical help, especially for men. More than anything, John’s story emphasizes honoring support, resilience, and the importance of living as a “survivor of life, not just cancer.” He reminds all patients: “Cancer is cancer, no matter the type or how ‘mild’ it may seem. Surviving is surviving.”

Watch John’s video and browse his edited interview transcript below for more about how:

  • Advocacy and specialized care are vital for rare cancers like salivary gland cancer, making it vital to seek multiple opinions
  • Support systems, both personal (family, friends, partners) and professional (support groups), make a profound difference
  • Every type of cancer is significant; “easy cancer” or “mild cancer” is a dangerous myth
  • Maintaining identity and routine during cancer treatment can aid emotional healing and mental well-being
  • John transformed from initial shock to embracing survivorship and planning a life of early retirement, travel, and continued musical achievement
  • Name: John C.
  • Diagnosis:
    • Salivary Gland Cancer (Carcinoma Ex Pleomorphic Adenoma)
  • Age at Diagnosis:
    • 61
  • Symptoms:
    • Rapid weight loss
    • Small lump under ear that became more pronounced and grew larger
  • Treatments:
    • Surgery: lumpectomy
    • Radiation therapy
John C. carcinoma ex pleomorphic adenoma
John C. carcinoma ex pleomorphic adenoma
John C. carcinoma ex pleomorphic adenoma
John C. carcinoma ex pleomorphic adenoma
John C. carcinoma ex pleomorphic adenoma
John C. carcinoma ex pleomorphic adenoma

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

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

Transcript of John’s Interview
  1. My name is John
  2. The subtle lump under my jaw
  3. How we confirmed my salivary gland cancer [carcinoma ex pleomorphic adenoma] diagnosis
  4. How my diagnosis impacted me
  5. My treatment plan
  6. My radiation therapy regimen and side effects
  7. I rang the radiation bell
  8. The hardest part: loss of taste and smell
  9. I have a strong support system: my friends, community, and partner
  10. No evidence of disease: scan results and confidence
  11. What I want others to know

My name is John

I was diagnosed in June 2025 with a rare cancer called carcinoma ex pleomorphic adenoma.

What I do for a living is where I find my joy. I am an opera singer, so anything voice-related brings me a lot of joy and passion. I have a social media presence where I talk about opera. I go to work and sing opera, come home, listen to opera, and talk about opera. 

It’s what I do, I’m the opera man.

The subtle lump under my jaw

I didn’t initially know anything was off. I had a little lump under my neck for a couple of years. When I had a cold, I could feel it get a little bigger, but then it would shrink. It was about the size of a pea. 

Over the last year and a half, that little pea became a bit bigger and more pronounced. I had also lost 50 or 60 pounds on purpose over a couple of years, so my face shrank and the bump became more pronounced.

I found an ENT and went to the doctor. He biopsied it, saying, “It’s probably benign.” The biopsy showed it was a benign tumor, but that it should come out because sometimes they later cause problems. We scheduled surgery to remove it. 

Three days later, he called to tell me it was cancerous.

How we confirmed my salivary gland cancer [carcinoma ex pleomorphic adenoma] diagnosis

The cancer was rare because this type, carcinoma ex pleomorphic adenoma, happens when a benign tumor’s cells convert to cancer. That’s the nature of this cancer: the conversion happens after benign removal.

At first, we didn’t know exactly what kind of cancer it was. More testing was needed to make a clear diagnosis.

My ENT recommended I see a cancer ENT doctor who specializes in head and neck cancer. We did a CT scan and a PET scan and waited for the tumor board to review my case. The board meets every Monday to discuss cases and choose the best procedures. 

They decided the best course was a neck dissection to remove as many lymph nodes as possible and determine if the cancer had spread.

A few weeks later, I had the neck dissection. The doctor said there was no cancer in any of the lymph nodes they removed. That meant subsequent radiation could focus on one localized spot instead of a wide field.

The surgery was successful. There was no pain, just a small scar. Healing took a week or two.

They wanted to act fast because it’s a high-density cancer, which can sometimes metastasize and be difficult to treat.

How my diagnosis impacted me

I was shocked. I absolutely was not expecting it. 

I remember I was on the phone in my room, and the doctor was talking to me, and all of a sudden I couldn’t hear him anymore. I was just lost in the word “cancer.” 

My family is large, but the only person who ever went through any kind of cancer diagnosis was my grandfather, who had pancreatic cancer when I was seven. Up until then, my family had dealt with heart issues, cholesterol, diabetes… conditions I’m familiar with. 

Fourteen years ago, I had a heart attack, and that set me on a healthy trajectory. Cancer wasn’t really on my radar.

My treatment plan

By July or early August, my doctor said the course was to start radiation once I’d healed from the neck dissection. He said head and neck cancers generally aren’t treated with chemotherapy, and thankfully, I didn’t need chemotherapy, just radiation. 

The challenge was timing. My contract year at the opera starts in August, right when rehearsals and preparations for opening night begin. I sing at the opera house, a church, and a synagogue, which are busy during High Holy Days. I had to consider how radiation would affect my voice, energy, ability to work, and whether I should just go on disability. But I wanted to start as soon as possible and get treatment out of the way.

He told me I’d need 33 sessions over about six and a half weeks, Monday through Friday. 

After a short vacation in mid-August, I returned and started radiation immediately, continuing through late September.

My radiation therapy regimen and side effects

For the first week or two, I felt almost nothing; my mouth was just a little dry. 

The first symptom was tooth sensitivity on the treated side, making brushing difficult. Then, mouth sores developed, making eating and swallowing painful. That side of my face became very red and swollen. My ear turned bright red, with sores inside it. I still feel a sound back there, waiting for it to heal.

The most profound effect was losing taste and smell. By the third week, food tasted like metal or chemicals, and then I completely lost both senses. Even now, they haven’t returned.

Thankfully, radiation did not affect my ability to sing. I fulfilled all my contracts at the opera house, synagogue, and church through the holidays. Some days were tough thanks to fatigue, throat pain, and body aches, but my workplace was supportive and never pressured me to come in.

Radiation became my daily routine. Treatments were at 9:30 a.m. I walked the dog, drank coffee (which tasted like nothing), biked or drove to the hospital, then did my treatment; just six or seven minutes. I’d return and start my day.

Once, I got the stomach flu for nine days and missed one day, but even when busy with temple singing for Yom Kippur, I arranged treatment around my schedule to avoid missing a session.

I rang the radiation bell

During radiation, you wait with others having treatment and develop relationships. I saw others ring the bell and say goodbye; I looked forward to my turn.

Last week was my final treatment, and I rang the bell.

The hardest part: loss of taste and smell

The loss of taste has been the most difficult part. During COVID, I lost my ability to taste for a week and thought I’d lose my mind. Now, unable to eat normally, it changes everything psychologically. I eat bananas and plain bread daily; food is flavorless or tastes bad, with a metallic or “vacant warehouse” chemical kind of taste.

It has been difficult, but life has thrown me challenges before, like a heart attack, losing a partner, and a severe leg injury. Each challenge showed me my resilience and helped me change my mindset to focus on positivity and what brings joy. 

Remembering my resilience gives me confidence that I’ll get through this, too.

I have a strong support system: my friends, community, and partner

I have an incredible support network. Dozens of friends are around to help, including through a meal train (despite my loss of taste), people praying, and offering to help. 

My boyfriend has been by my side every day, always asking how to help and making sure I get nutrient-dense food. My biggest strength is having him there for me. 

I don’t know how people do this alone.

No evidence of disease: scan results and confidence

Hearing “no evidence of disease” felt incredible. I worried about spread, but the PET scan and neck dissection showed no cancer in the lymph nodes. This gave me confidence moving forward. I knew what I was dealing with and could focus on healing and ringing that radiation bell.

Now, I’ll see my ENT for follow-up in a couple of weeks, with scans and exams every three months for the first year, then every six months.

What I want others to know

When I was diagnosed, I read extensively and found out I wouldn’t need chemotherapy, and the cancer hadn’t spread. I thought I had an “easy cancer,” but that mindset diminishes the disease. Cancer is cancer, no matter the type or how “mild” it may seem. Surviving is surviving.

Nutrition during radiation is different. I eat healthy generally, but during treatment, you eat for medicine, not pleasure. When taste is gone, I eat for healing: protein drinks, soft and bland foods, and whatever my body can tolerate.

With each challenge, I ask what I’ve learned and how to look forward, not back. This experience motivates me to live a healthy lifestyle and plan for an early retirement, to enjoy life while still healthy. 

Survivorship means continuing the life I’ve built and shaping my future; travel, new environments, and embracing change. I want to live as a survivor of life, not just cancer.

Being intimate and addressing changes in libido are part of healing, too. Finding someone understanding to talk to is crucial for physical and mental health. Gilda’s Club in Chicago is a great resource, providing emotional, physical, and financial support, nutrition and relationship classes, and more. Men and anyone with cancer should find organizations offering emotional and social support.

John C. carcinoma ex pleomorphic adenoma
Thank you for sharing your story, John!

Inspired by John's story?

Share your story, too!

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Categories
Chemotherapy Clinical Trials Debulking Desmoplastic Small Round Cell Tumor (DSRCT) Patient Stories Radiation Therapy Radioimmunotherapy Rare Surgery Treatments

“Hope Always” — Hunter’s Inspiring Rare Desmoplastic Small Round Cell Tumors Story

Hunter D. desmoplastic small round cell tumors

“Hope Always” — Hunter’s Inspiring Rare Desmoplastic Small Round Cell Tumors Story

When he was 21, Hunter balanced the roles of a full-time 911 dispatcher, a son and friend, and a gamer. But he was about to experience a rare and intimidating diagnosis, desmoplastic small round cell tumors (DSRCT).

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

When symptoms first appeared in late 2023, including sharp abdominal pain, nausea, and vomiting, Hunter initially brushed them off. But within days, an ER visit revealed abdominal and pelvic masses. That led to a biopsy at the University of Kansas Cancer Center, where he finally heard the frightening and alien words “desmoplastic small round cell tumors.” The internet offered its usual blunt statistics, but instead of letting fear take over, he chose to focus on the possibilities of treatment and the hope that lies beyond numbers.

Hunter D. DSRCT

Throughout the experience, identity became an anchor. Being a dispatcher and caring for others had always been central to Hunter’s life. Transitioning from caregiver to patient was jarring, but it also opened a new perspective. Now, he sees the subtle emotional weight that patients carry; it’s something that goes far beyond medical charts. That awareness doesn’t erase the difficulty, but it deepens empathy for others.

Hunter’s treatment path for this rare cancer was intense: multiple surgeries, rigorous chemotherapy cycles, a clinical trial in New York, and both traditional and radioimmunotherapy radiation. Every phase came with its own hurdles, from relentless nausea and hair loss to the emotional strain of living life in hospital rhythms. He leaned on surprising comforts, including peppermints that successfully warded off nausea, and the unwavering support of family, friends, colleagues, and a community that consistently stepped up.

Survivorship, for Hunter, isn’t just about returning to “normal.” It’s about discovering purpose. Feeling supported inspired a commitment to give support in return. Online DSRCT groups offered connection and a simple but powerful phrase: “Hope always.” That reminder became a guiding principle on days when his energy was low or uncertainty high. Hope wasn’t at all passive; it was active, a choice to find positivity even within the hardest moments.

Self-advocacy also emerged as essential. Hunter’s experience navigating referrals, accessing clinical trials, and learning to speak up within the healthcare system reinforced one vital truth: patients deserve to be heard. He encourages others to share their stories, ask questions, and build visibility around rare cancers like desmoplastic small round cell tumors. Open conversations create stronger communities and remind those going through it that they are not alone.

Watch Hunter’s video and read the interview transcript below. You’ll see how:

  • A dispatcher’s life flipped from caregiver to rare cancer patient overnight
  • Peppermints became Hunter’s secret weapon against relentless chemo nausea
  • A clinical trial in New York offered new hope
  • “Hope always” became Hunter’s guiding mantra through fear and fatigue
  • Hunter now champions survivorship and the power of patient voices
  • Name: Hunter D.
  • Age at Diagnosis:
    • 21
  • Diagnosis:
    • Desmoplastic Small Round Cell Tumors (DSRCT)
  • Symptoms:
    • Abdominal pain
    • Nausea
    • Vomiting
    • Fatigue
  • Treatments:
    • Surgeries: debulking surgeries
    • Chemotherapy
    • Radiation therapy: radioimmunotherapy, under a clinical trial
Hunter D. desmoplastic small round cell tumors
Hunter D. desmoplastic small round cell tumors
Hunter D. desmoplastic small round cell tumors
Hunter D. desmoplastic small round cell tumors
Hunter D. desmoplastic small round cell tumors
Hunter D. desmoplastic small round cell tumors
Hunter D. desmoplastic small round cell tumors

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

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

Transcript of Hunter’s Interview
  1. My name is Hunter
  2. My symptoms came on suddenly
  3. The moment everything changed
  4. My treatment plan
  5. I took part in a clinical trial
  6. The plan moving forward
  7. The side effects I experienced during treatment
  8. The biggest challenge I faced
  9. What survivorship means to me
  10. What I want others to know

My name is Hunter

I’m 23 years old. I was diagnosed with desmoplastic small round cell tumor, or DSRCT.

My hobbies mainly consist of playing video games with friends and spending as much time as possible with family and friends. I work a lot, but I do love my job.

I work as a full-time 911 dispatcher and currently serve as a supervisor. I’ve been a dispatcher for the last five years. I grew up in emergency services with both my parents doing it.

It’s definitely been an interesting transition, going from a caregiver side to the patient side of things. You know, I’m used to seeing and talking to patients every day as part of my job and hearing what they have to go through, but going through it myself has given me a whole new perspective — seeing how it is to be a patient, and living through some of their daily struggles.

I got diagnosed when I was 21. I’m sure everybody can think of what every 21-year-old would rather be doing than fighting cancer. But I’ve tried not to really look at it as getting robbed of my early 20s. I’d rather see it as having been taught how to live a better life, so that I can live the rest of my life the best way that I can.

My symptoms came on suddenly

It really only took 1 or 2 days of not feeling right to finally decide to go to the emergency room and get checked out. And it all really started around November 2023.

We had just come back from a festival a couple of towns over. The next day, I started feeling some pretty sharp abdominal pains, which wasn’t normal, but I just thought it was a stomach bug and I could sleep it off, and it wouldn’t be anything. But the next day, the pains got worse, and I started to have nausea and was vomiting as well. And as that worsened and went on through the day, I ultimately decided that night that it was time to go to the ER and get checked out. And during that visit, we discovered that I had a rather large mass growing in my abdomen and a smaller mass in my pelvis.

The people at the ER didn’t have an exact answer for what they were looking at because they weren’t sure at the time. So we were referred to the University of Kansas, or KU Cancer Center, for a biopsy and further diagnosis. And we actually had to self-refer ourselves because there were no local hospitals taking incoming patients at the time. So we had to take steps outside of the emergency room to take the next step in my treatment plan. 

The moment everything changed

We visited the doctors at KU and got a biopsy scheduled. And from that point, we were trying to put the next steps in place. It wasn’t until we got the biopsy done and I had a port placed in my left shoulder that we found out that I actually had a desmoplastic small round cell tumor, a rare type of cancer. And then I was referred to the specialist that they have at KU.

Getting my diagnosis — there are actually two parts to that story. The first had to do with the initial findings in the ER when they had to come in and break the news that I had my tumor. My mom, who has been a nurse for years and years and has seen everything, was a little bit of an emotional wreck. And my knee-jerk reaction in that situation was to try and make things funny. So I was trying to make jokes out of the situation. While it was a rather serious topic at the time, I was doing my best to make light of the situation and keep a positive outlook. 

The second part came two weeks later, a week after my biopsy, when we received the official results. I was with my best friend at the time, and we were in my basement when I got the call from my doctor. And we rushed up to my mom to see what the news was, because at this point, we were thinking it was a more controllable cancer, such as a testicular cancer or a lymphoma. But I was told that I had what’s called a desmoplastic small round cell tumor and that I have an Ewing sarcoma genetic trait to it as well. So it was a little difficult finding out that I had such a rare disease. And of course, we didn’t know anything about it at that point. We had never heard of it before; most people haven’t. The more that we were researching this, the more worrisome it became, because Google will be pretty straightforward and will give you some sad statistics, but luckily, that doesn’t seem to be the case with most cases these days.

My treatment plan

We knew pretty early on that no matter what it was, we were going to be hitting it pretty hard with chemo pretty early on. So I had a port placed within about a week of getting out of the ER, just as a precaution, in case we needed it. And it turns out that we did end up needing it. 

It wasn’t long after my diagnosis that my doctor at KU was on the phone with me, talking about the treatment cycles that I was going to be on. He didn’t give me a lot of options, but that’s just because there weren’t a lot of options to effectively fight this. So I was put on a pretty rigorous chemo cycle that did quite a bit of damage for a while, but I had switched around between a few different treatments and been in and out of the hospital for transfusions and IV antibiotics. I’d been admitted a multitude of times due to complications with chemo alone. And you know, I was putting my body through all of that, but I just had to keep thinking to myself during that time that there was an end to it and that there was a reason I was doing all of it.

So the overall treatment plan was to hit it early with chemo to hopefully shrink any tumors, and after that, to go in and remove those tumors surgically. And once those tumors were surgically removed and they could no longer see or detect any disease or scans, they were planning to going to do a whole abdominal radiation therapy as well as a clinical trial. And over the years, all of those treatments just added up and got me to where I am today. But yeah, three different surgeries. The radio immunotherapy trial, a month of standard radiation or traditional radiation, and then chemo on top of all of that, and then finishing it off with maintenance chemo.

I took part in a clinical trial

The doctors say the most effective treatment plan for desmoplastic small round cell tumor is to hit it early on with surgery, followed by traditional radiation treatment. The main kind of surgery for this type of cancer is called a debulking surgery. And to my understanding, that’s where they go in and try and remove any physical mass that they had seen on scans that they can physically get hold of. And once those are removed, they try and target that area with a traditional type of radiation to kill any residual cells that were left over. And there are also many other trials offered for this type of cancer that patients have access to.

I may not remember everything, but to the best of my memory, the clinical trial that I took part in was a radioimmunotherapy trial offered by Dr. Slotkin’s team at Memorial Sloan-Kettering in New York City. Simply put, they surgically removed the masses from my abdomen and put a radioimmunotherapy fluid into my abdominal cavity to sit there and absorb over a few days. And that would hopefully mark the targeted cells for radiation to be killed later on during the traditional radiation process. So with the clinical trial, I also had my third and final exploratory surgery, where they went in and cleaned up any scar tissue or anything else left behind, and made sure I didn’t have anything else growing. 

After the clinical trial, they followed up with a month of traditional radiation. So we were living out of the Ronald McDonald House in New York for about a month straight while I received radiation treatment.

The plan moving forward

My maintenance chemo was scheduled for about a year. We started around January of 2025, and I’ll hopefully be wrapping up around January 2026. I don’t know exactly how many treatments I’ve had, but I’ve had them pretty consistently every three weeks. So once or twice a month, I’ll go in for a week of chemo and then have two weeks off. So the cycles are definitely up there. I’ve stopped keeping track after so long, but hopefully I’ll be wrapping up soon.

We’re planning a final trip out at the first of the year, hopefully a remission trip, and ring the bell out there and have my remission start in New York, where my big medical journey started.

The side effects I experienced during treatment

The most significant side effects that I first experienced when starting chemo and having my other treatments were the nausea and vomiting. They were relentless. There wasn’t really anything I could do to stop them. There was no medication I could take. Nothing would help. Food smelled different. Food tasted different. The only thing that helped get my nausea under control was peppermints. Because peppermint oil is supposed to naturally help soothe the stomach and treat nausea. So everybody would chip in and help buy me peppermints whenever I was doing my chemo weeks because they knew that was the only thing that really helped keep me from getting sick.

I also experienced hair loss. Luckily, I’m growing my hair back now, but my first chemo was pretty quick to take the hair out of my head whenever I started it. I was rocking the bald look for a while. But I feel like I look a lot better with hair. Luckily, I’m able to grow some hair now that I’m on my maintenance chemo.

The biggest challenge I faced

My biggest challenge is probably trying to feel normal after getting through it all again, because I’ve spent so long in and out of the hospital, in and out of doctors’ appointments, getting tested. People are constantly asking how I’m doing. And that’s something I constantly have to be aware of — how am I doing, really? I actively have to be watching everything that’s going on with my body and paying attention to everything that my body’s telling me. 

But I’ve learned to stop worrying about things so much, to take everything day by day, and not necessarily be so anxious about every little thing that’s going on. I’m getting back to the normal side of life.

So early on, it was made very clear to me that I wasn’t going to have any problems finding support in my community. People really stepped up. They took time to make sure that I was doing okay during my treatment weeks and to check on me and make sure I and my family had everything we needed. I was also very lucky that my friends were able to support me through it. I wouldn’t have been able to get through it all if it weren’t for how well my employer treated me during all of it, too. They allowed me to keep my job while I was sick and kept my seat warm for me for whenever I was ready to come back.

What survivorship means to me

For me, survivorship means finding a higher purpose. Something that I’m more meant to do. For me, that’s helping others. I’ve found a lot of comfort in doing that. Well, it’s something that I already found comfort in doing before I got sick. But my experience has really resolidified that. Survivorship for me means advocating for others, moving on, not staying silent, and finding a voice. Not only for myself, but for others who are going through things like this. Because it’s not always easy to find yourself while you’re going through it.

I’m actually in a couple of online support groups for DSRCT. And one of the things that they say is, “Hope always.” And that was something I had never really heard until I started interacting with that group of people. But “hope always” has now come to mean to me that no matter how grim things look, all you can really do at the end of the day is hope. Because if you don’t, who will? Somebody’s got to have a little bit of hope in such a situation. I’ve had my hopeless days, but I’ve never let hopelessness consume me. I’ve always tried to try and take away at least one positive out of any bad situation, to kind of give myself a different perspective.

What I want others to know

One message that I definitely want people to take away is how important it is to find your voice and be heard. Because I don’t think anybody should go through this silently. They should absolutely fight cancer; they should be kicking and screaming. Since that’s how cancer tries to take you down, that’s how you should try and take cancer down, too. 

I think finding a voice and being able to tell your story as a survivor and a patient is important not only to help give hope to others but also to be visible to other people, as someone who’s gone through it and someone who understands what other people are going through. I just want a stronger community. 

I don’t want it to be such a hard thing for people to talk about. I want people to be able to talk about it more openly. Because when we talk about it openly, we can start tackling it. I feel like a lot of the problems don’t get talked about enough. 

Patient advocacy is one thing that’s really important for me. After having gone through our own struggles with the American healthcare system, I am definitely a strong believer in finding your voice and self-advocating for yourself as a patient. Because if you don’t, who will?

Hunter D. DSRCT
Thank you for sharing your story, Hunter!

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Categories
Chemotherapy Immunotherapy Kidney Patient Stories Radiation Therapy Renal Cell Carcinoma Treatments

A Life Defined by Strength, Hope, and Community: Mia Hamant’s Stage 4 Kidney Cancer Story

In Loving Memory: Mia Hamant 2004-2025
In Loving Memory: Mia Hamant 2004-2025

A Life Defined by Strength, Hope, and Community: Mia Hamant’s Stage 4 Kidney Cancer Story

In memory of Mia Hamant, who passed away after battling stage 4 kidney cancer at age 21.

This interview with Mia Hamant was recorded on October 15, 2025, just three weeks before her passing. When we spoke, Mia was full of determination and hope. She wanted to share her experience to help others understand what it means to face a rare and aggressive cancer at such a young age.

In Loving Memory of Mia
(2004-2025)

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez & Jeff Forslund

Mia was a goalkeeper for the University of Washington women’s soccer team, a psychology major, a loyal friend, loving daughter, and a fighter who approached every challenge with courage and grace. As Mia’s disease progressed, she was planning for her next steps including rebuilding her strength and pursuing clinical trials.

We release this video in her memory, with deep gratitude to Mia and her family for allowing her story to be shared. We hope you’ll listen to her words as she meant them. Her message is one of honesty, strength, and love for life, even in the hardest moments.

A goalkeeper for the University of Washington, Mia described symptoms that first masked as stress and travel-related illness, until scans and pathology uncovered a rare, aggressive kind of kidney cancer, associated with a mutation in the SMARCB1 gene, that demanded urgent action. She made a personal choice to limit some of the cancer details she wanted to be told. Maintaining uncertainty, she says, preserved hope and kept her focused on the next step.

Join Us in Honoring Mia: Share Your Thoughts and Encouragement on YouTube

Mia H. kidney cancer

Treatment started immediately with inpatient chemotherapy. Over time, her plan included cycles of chemo, spot radiation for pain (including back radiation to relieve leg pain), and a trial of immunotherapy that worsened the disease; something Mia framed as the treatment’s effect and the cancer’s response. Side effects such as nausea, pain flares, and chemo‑induced enteritis requiring hospitalization shaped her daily life. Hair loss was more manageable emotionally, eased by support from family, friends, and her boyfriend.

What helped Mia most was community. The UW Women’s Soccer program, coaches, classmates, and even a local coffee stand rallied around her. They posted signs, organized and contributed to fundraisers, and insisted that she remained part of the team. This close community kept her feeling grounded. She centered herself with routine to help her feel normal. She celebrated her birthday and asked friends to share everyday “drama.”

She continued school online and was aiming to graduate this coming year. With placing her dream of joining the National Women’s Soccer League (NWSL) on hold, she was focused on rebuilding her body and had pursued a second‑opinion visit at MD Anderson to explore clinical trials for her rare cancer. The lesson she carries forward is to follow one’s own process with the care team, because each experience with cancer is deeply personal, and the right path is the one that fits the person, not the statistics.

Watch Mia’s video and read through the transcript of her interview below. You’ll learn more about:

  • The importance of following your own process: decide how much information you want and communicate that clearly to your care team
  • How treatment paths can shift; if a therapy worsens a disease like kidney cancer or side effects are overwhelming, teams can adjust plans
  • How community matters: teammates, friends, family, and local supporters can make daily life and treatment feel more manageable
  • Transformation: You’ll see how Mia moved from shock and uncertainty to agency, advocating for timelines, exploring second opinions, and redefining “normal”
  • There is no one “right” way to navigate a cancer experience; the best approach is the one aligned with your values and needs
  • Name: Mia H.
  • Age at Diagnosis:
    • 21
  • Diagnosis:
    • Kidney Cancer (SMARCB1-Deficient Renal Cell Carcinoma, Non-Sickle Cell Trait)
  • Staging:
    • Stage 4
  • Mutation:
    • SMARCB1
  • Symptoms:
    • Bad cough
    • Fatigue
    • Nausea
  • Treatments:
    • Chemotherapy
    • Radiation
    • Immunotherapy
Mia H. kidney cancer
Mia H. kidney cancer
Mia H. kidney cancer
Mia H. kidney cancer
Mia H. kidney cancer
Mia H. kidney cancer
Mia H. kidney cancer
Mia H. kidney cancer
Mia H. kidney cancer

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

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

Transcript of Mia’s Interview
  1. My name is Mia
  2. My soccer career and athletic background
  3. The first signs that something wasn't right
  4. My path to my kidney cancer diagnosis
  5. Getting the official diagnosis
  6. Learning about my stage and prognosis
  7. Determining my treatment plan
  8. Getting a second opinion
  9. My treatment journey
  10. Managing side effects
  11. Dealing with hair loss
  12. My current treatment plan
  13. Managing my diagnosis while being young
  14. Balancing school and treatment
  15. Finding support during treatment
  16. Finding normalcy as a 21-year-old
  17. What hope means to me moving forward
  18. What I feel I've been robbed of
  19. My message to others

Editor Note: This interview with Mia Hamant was recorded on October 15, 2025, just three weeks before her passing.

My name is Mia

I have stage four kidney cancer, specifically SMARCB1-deficient renal cell carcinoma. I got diagnosed in 2025.

I am a senior now at the University of Washington. I have been on the women’s soccer team for all four years. In my first year, I tore my ACL, so I redshirted. But aside from that, it’s been pretty smooth sailing, except for this cancer diagnosis, of course. 

I’m a psychology major, and I want to be a therapist after college.

My soccer career and athletic background

I’m a goalkeeper, which a lot of people think is the craziest thing ever. But I really love it. I started playing when I was around three years old, just doing little camps and whatnot, just getting touches on the ball. I also played basketball, softball, and volleyball growing up, which all helped me become the soccer player I am today.

I started with a 50% scholarship, and then I increased my scholarship. After playing last year and performing well, my coach upped my scholarship to a full ride.

The first signs that something wasn’t right

Things didn’t feel right for a pretty long time, honestly. I started feeling a little ill at the end of last year, so I would say at around November or so, things started heading downhill, but that was during soccer season. So I chalked it up to stress, because we were traveling so much around the country, and there was just a lot going on. 

But the first symptom I realized I had was intense lethargy. So I was super tired, and my workouts just weren’t doing well. Usually, I could pump myself up, get myself going. But it wasn’t like that at all. So I was pretty tired. And then my breathing started getting pretty bad. So I was really short of breath. I am short of breath right now, too, because there’s fluid getting in my lungs and whatnot.

At the end of March, we were on a team trip in Spain, which was super cool, a great experience. But I got really sick during that trip, and I was throwing up and stuff. And I was thinking, “This is not normal. This doesn’t feel right.” But I also thought it was due to the food, or the travel, or something. 

I got back to the States at the beginning of April, and then that’s when I went to the ER for the first time because of shortness of breath in the morning. And then I was told that it could be one of three things: an autoimmune disease, an infection, or cancer. So that’s when I discovered that I could have cancer. And then a few days later, I was diagnosed.

My path to my kidney cancer diagnosis

I had every single scan in the book. I was just there with so many different doctors just coming in and out. I was just a medical anomaly. 

I finally got admitted to the hospital after they ran a biopsy, which confirmed the diagnosis. They drained my lungs and got some samples from that, and also did a liver biopsy. This allowed them to diagnose me on April 11th when I was admitted to the hospital.

I honestly can’t even remember what happened at this point. There was just so much going on in that short time span. I think they just wanted to double-check and really get that biopsy going to make sure we knew the right diagnosis.

I think they were just seeing a bunch of lesions everywhere, all over my body, because I got diagnosed pretty late, so it was stage 4. So there’s just a bunch of lesions all over my body. And I’m pretty sure that’s what made them decide.

Getting the official diagnosis

We laugh about this now, but when I found out, I was alone. My mom was in the hospital with me, but she was taking a work phone call, and I wanted to figure out what my diagnosis was on my own. But the doctor came in, and I feel so bad for this guy. He has a daughter my age. And he had to break the news to me, and I just started bawling my eyes out. And then my mom comes in and goes, “Why would you tell her without me?” It was a whole scene. It wasn’t a huge deal, but it was just funny to look back at. We joke about it now. 

I just remember I was so shocked. I just had no idea what that diagnosis came with. So I was just out of it for a while. But eventually I got my bearings, and I really just put my mind to it and thought, “Okay, this is actually happening.” But for the first part, I was super out of it and just bawling my eyes out.

I’ve got no family history of cancer at all. I’m missing a certain gene that allows me to fight this cancer.

Learning about my stage and prognosis

I actually didn’t know for the longest time that I was at stage 4, because I didn’t want to know any details about it, even how long I have to live or whatever. I hate knowing those details. So I actually kept it under wraps for a while, and I found out through my GoFundMe page once it was posted that I had stage 4 cancer. 

It is an ignorance-is-bliss type of situation, and I really appreciate the way that the doctors and I went about it, because I think it made my process a lot easier and more manageable for me to comprehend.

Determining my treatment plan

Honestly, that was a blur, too. But I think we immediately decided to start chemo because of the state of my body. It was hard for me to breathe, hard for me to move, to do all these things. So we immediately decided to start treatment no matter what. 

I wanted to get some cold caps and stuff for hair loss, but there was just no time for that. There’s a bunch of other things with fertility and stuff that I was hoping to get done, but I couldn’t wait any longer for that either. So it was a whirlwind. 

I did end up getting my first treatment of chemo in the hospital when I was admitted. So the doctors did a really good job of just getting that started and getting the ball rolling. There are definitely other ways I feel I could have gone about it, but timing-wise, it was very difficult.

Getting a second opinion

We did not initially get one, I just went with the original recommendation. We did get a second opinion recently in Houston, Texas, at MD Anderson. After that visit, I found there are clinical trials I could possibly join. My disease is rare, so we want to look at all options.

My treatment journey

I’ve done a bunch of treatments so far. 

I started with chemo. I did three rounds of chemo. My schedule, my regimen, is every three weeks. I go in once every week, and then I have the fourth week off. So it’s a four-week cycle. I think I did that 2 or 3 times. 

We tried to get off of chemo to try immunotherapy, but that didn’t work for me at all. My body did not respond to that very well, and I started getting pain flare-ups and all this other stuff. The immunotherapy actually made my cancer worse. That was a little bit of a setback. So we went back to chemo. 

I’ve also been doing radiation to treat spot areas for pain, on my back, to help with pain in my legs. And what I’ve learned is that everything’s connected in your body, obviously.I had my first radiation session around the 5th of July. And then I’ve gotten radiation three times total. That was the first time, and then two times recently. But I’m still just doing chemo. I did take a little break, but now we’re back up to the cycle again.

Managing side effects

I’ve had tons of side effects, especially right now. I can’t even list them all. 

Nausea is a big one. It makes it really hard for me to eat. What I recommend for that one is just whatever sounds good, just get it and eat it. That’s all I’ve been doing recently. DoorDash has been my best friend. 

Then I’ve had pain flare-ups. I had a really bad one last night that comes along with radiation, which is super unfortunate because you can’t really do anything about it. My left leg was just in so much pain last night, and I just had to tough it out. 

I had to be hospitalized for chemo-induced enteritis, which is inflammation of the small intestine. So I was just in so much pain that I had to get an ambulance. It was crazy.

Dealing with hair loss

When I first shaved my head, I was totally fine. I actually had to shave my head the other day again, because hair was falling out again because of chemo. But when I first shaved it, my family, one of my best friends, and my boyfriend were there with me. So it made it very easy to just get in the flow and just have fun with it, which I really appreciated because that could be a very emotional process. 

But for me, I thought it was just a sign, just taking the next step now. “Now I’m a real cancer patient.” That’s literally how I felt. 

Honestly, hair loss hasn’t really bothered me at all. I was told I have a good head shape, so that also helps. But yeah, it’s not really a big deal for me.

My current treatment plan

Well, we’re stopping radiation now because I just did another cycle. So last week was really tough because I did radiation and chemo, which I haven’t done before, combined therapies. So that was really, really tough on my body. And just the eating was very difficult, and the nausea was really awful. But now we’re just doing chemo from now on.

As I mentioned, I went to MD Anderson, and they have clinical trials that I could potentially try. I’m not sure about the exact details, but we’re working on those, especially since my disease is so rare that we really want to see all the options we possibly can.

Managing my diagnosis while being young

Definitely taking a break from soccer. I still try to make all the events. I try to make every single soccer game that I can for U-Dub because I want to be there for my team, and because my team’s always here for me. 

That’s the saddest part, honestly, not being able to play with my best friends. Last year, I would say was my breakout season. So I was able to get a lot of playing time then and just really prove to not only my coaches, but to myself and my teammates that I do have what it takes to play at that level. And I did want to go pro eventually, but that has been stopped. That has been put on hold. So yeah, it is weighing on me a little bit, but the fact that I’m still able to be such a part of the team has truly helped a lot. My team has done so much, my coaches have done so much to make me feel involved, so it really takes the burden off of that in that regard.

I think that’s honestly a blessing about being so young with this diagnosis, just being surrounded by that community, because in two years, I wouldn’t be able to be surrounded by my best friends, fighting this together, because we’d be all over America or something. 

Being this young and having that automatic group of best friends has been really, really helpful. And I live with my college friends too. So just seeing them daily, even if I’m not doing well, it’s just really nice to just have that outlet.

Balancing school and treatment

I’m doing fully online school. I tried to go in person for a little bit, but that did not work out very well. So yeah, we’re all online now.

Hopefully, I’ll graduate in the spring. I just have to take one statistics class in person that I’m really stressing about. But aside from that, yes, I am on track because we were able to do some classes before I got diagnosed. So I’m ahead of the curve, which is great.

Finding support during treatment

Just my normal resources. I see a therapist. I go to acupuncture, which is a lot more therapeutic than you would think, because my acupuncturist also dealt with cancer in her past. So that has been really helpful. 

Friends and family have been amazing. Nothing short of incredible. I pride myself on the community I surround myself with. Having that solid base already has really helped me propel through this diagnosis.

The drink that I was posting about is from a little coffee stand called Muddy Waters. I’ve just been going to them forever, but they actually put up posters for me and stuff without me even asking, which is super nice. It had my GoFundMe page linked and stuff, and I know the baristas by name; they’re the best. It was super sweet that they were able to do that for me.

I just want to give a shout-out to UW Athletics. Just for all the support they’ve shown me throughout this whole thing. Not just my team, but all the other sports teams. There are some sports teams, like softball, that are the first to wear the orange ribbons for me or post about me, or shout me out. So, just really appreciate all that Huskie athletics has done for me.

Finding normalcy as a 21-year-old

The most normal thing I’ve done recently was celebrate my 21st birthday, which was super fun, on July 30th. I was able to go out and have my first drink and everything, so that was really great. I went out with my friends and family, which is not every 21-year-old’s dream, but I really enjoyed it. 

I’d also say having my boyfriend just as a rock for me has been incredible. He treats me normally. Really cares and asks, “How do you want me to go about this?” Because they could baby you or they could act distant. But being able to be adaptive with him has been really great. And then my friends are just so amazing. They treat me normally as well. I just want to know the details. I want to know the drama. Don’t keep anything from me. Just treat me like a normal person. So that’s been the biggest thing. That’s been really great.

What hope means to me moving forward

I think that hope for me came from not knowing all the details of my diagnosis and whatnot, because it gives me hope that all the awful things on the internet aren’t real. Hope for me is just getting back to my normal life and living like a normal person. That’s all I could ask for, honestly. Just back to normal life. And I know life will never be normal again. But just having that hope that things will be normal again one day.

I have no plan as of now. Just trying to make sure my body heals. I really want to build my body back up. That’s a huge thing that I want to work on, because I’ve lost a lot of weight and a lot of muscle, and my body is something that has propelled me through the past four years of sports and school and everything. So that’s the number one priority for me. Along with my education. Not sure what the next steps for that is, but as I said, I want to be a therapist, so just wherever that takes me. Internships, other opportunities like that, just whatever I can get, honestly.

What I feel I’ve been robbed of

I feel I’ve been robbed of my whole soccer season. And just my body being at its peak. Every 21-year-old girl, this is your prime, almost. Your 20s are when you have the best physique, the best body. Hopefully. Ideally. So just not being the most confident in my skin has really sucked. So I feel I’ve been robbed in that way because my body is just fighting the cancer. It can’t do as much for me as it did before. So just not being able to work out has really sucked. And just not being able to move my body the way I want to has been a really hard part for me.

My message to others

I always say this. Follow your own process. As I said before, I did not want to know my diagnosis. But some people really want to know it, while others, like me, don’t. So just communicate with your medical team and figure out what is best for you, not what is best for everyone else. Because everyone copes differently, and it’s scary stuff. It’s not fun. So yeah, just follow the way that you want to go about things and just really stick up for yourself.

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Categories
Chemotherapy Eye Cancer Head and Neck Cancer Lacrimal Gland Cancer Patient Stories Radiation Therapy Surgery Treatments Tumor excision

Seeing Beyond the Fear: Steven’s Fight Against Rare Eye (Lacrimal Gland) Cancer

Stephen S. lacrimal gland cancer

Seeing Beyond the Fear: Steven’s Fight Against Rare Eye (Lacrimal Gland) Cancer

When a small dark spot appeared in Steven’s vision in June 2024, it seemed like a minor eye issue. He saw an ophthalmologist, and went through the normal process to uncover what was going on in his eye. What he didn’t know was that the source lay in one of the smallest yet most vital structures of the eye—the lacrimal gland, responsible for producing tears. Further testing revealed something far more serious: a rare cancer called adenoid cystic carcinoma, originating from that tiny gland tucked above the outer corner of his eye.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Steven’s lacrimal gland cancer diagnosis unfolded gradually and culminated in surgery that revealed cancer rather than the expected benign cyst. While his initial shock was compounded by the rare and poorly documented nature of adenoid cystic carcinoma, Steven credits his support team, including his wife, children, and a neighbor oncologist, for helping him make sense of his treatment options. After consultations at MD Anderson and Mayo Clinic, he began an intensive six-week regimen of radiation and chemotherapy, chosen specifically for the cancer’s tendency to spread along nerves and resist standard treatments.

Stephen S. lacrimal gland cancer

Throughout his treatment, Steven remained firmly committed to family life and self-advocacy. He emphasizes how critical his support team was in managing daily realities like side effects, exhaustion, and the ongoing fear associated with “scanxiety.” His story is marked by personal and professional transformation. When he completed treatment, he was relieved and proud and celebrated by ringing the clinic gong. 

Steven now looks ahead to regular monitoring and a new chapter in oncology nursing, hoping his personal insight into adenoid cystic carcinoma will empower him to advocate more authentically for future patients. Ultimately, his lacrimal gland cancer experience highlights the power of hope, the importance of purposeful action, and the value of forming strong support networks.

Watch Steven’s video and read through the transcript of his interview further down to delve into:

  • How early self-advocacy can make a critical difference in rare cancer diagnosis and treatment
  • The importance of a strong support system in coping with both treatment and uncertainty
  • Steven’s transformation from patient to future oncology nurse, inspired by his own experience with lacrimal gland cancer
  • The distinct challenges of parenting during treatment, and how maintaining involvement and honesty with children fosters connection and healing
  • How being proactive and insisting on a thorough investigation led to timely and effective treatment for Steven
  • Name: Steven S.
  • Diagnosis:
    • Lacrimal Gland Cancer (Adenoid Cystic Carcinoma of the Lacrimal Gland)
  • Age at Diagnosis:
    • 36
  • Symptoms:
    • Appearance of black spot in vision
    • Drooping of affected eye
  • Treatments:
    • Surgery: tumor excision
    • Chemotherapy
    • Radiation therapy
Stephen S. lacrimal gland cancer
Stephen S. lacrimal gland cancer
Stephen S. lacrimal gland cancer
Stephen S. lacrimal gland cancer
Stephen S. lacrimal gland cancer
Stephen S. lacrimal gland cancer
Stephen S. lacrimal gland cancer

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

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

Transcript of Steven’s Interview
  1. My name is Steven
  2. When I first noticed something was wrong
  3. The day of surgery
  4. The moment everything changed
  5. Sharing my lacrimal gland cancer diagnosis with my family
  6. Making treatment decisions: advice from my care team
  7. My treatment plan
  8. Side effects and coping with treatment
  9. Finishing treatment: ringing the gong
  10. Ongoing monitoring and genetic testing
  11. The biggest challenge: the impact on family
  12. Parenting during cancer treatment
  13. Scanxiety: the anxiety of awaiting scan results
  14. Survivorship and career aspirations
  15. Taking the boards and job search after treatment
  16. The meaning of hope: my advice to other cancer patients
  17. My advice to others

My name is Steven

I was diagnosed in June of this year with adenoid cystic carcinoma originating from the lacrimal gland in the orbit of my eye.

I feel like I’m a family guy. I enjoy spending time with my kids, staying active, and my friends and family consider me a hard worker. My wife and I have three kids, ages 11, eight, and two. There is a significant age gap because our middle daughter has Down syndrome, and we didn’t expect to have more children, but we eventually decided to have one more.

I’ve always been an active person. I played baseball growing up, and now I play basketball in the mornings before work. I spend a lot of time with my kids, and recently, I decided to go back to school, which is something people usually do at a younger age.

When I first noticed something was wrong

About a year ago, in June 2024, I noticed a black spot in my peripheral vision. It was similar to pressing on your eye and seeing a spot on the opposite side. I called an ophthalmologist, who ran tests and told me they didn’t see anything. I had surgery for a clogged tear duct years before and thought it might be related, so I ignored it. The doctor told me to come back if symptoms continued, but I put it off.

After graduating from nursing school, I sent a selfie to my wife and noticed my eye looked lower. I typed my symptoms into ChatGPT, which advised me to seek care, so I went to the ER that Sunday. They performed a CT scan and MRI, finding a tumor, but initially thought it was a benign cyst. I was referred to an oculoplastic surgeon, who echoed the “benign cyst” theory, but the MRI indicated ACC could not be ruled out, though it’s rare. Surgery was scheduled.

The day of surgery

I went into surgery expecting a routine cyst removal. All the doctors reassured me it would be a straightforward procedure. After surgery, the nurse practitioner told me they found cancer and sent it for a biopsy. That was all I knew at first; I had to wait for the biopsy results to get a precise diagnosis.

The moment everything changed

When I first heard the diagnosis, I had never heard of this type of cancer. I immediately started researching and discovered that the tumor’s growth pattern has the biggest impact on survival rates. There are three types: solid (most invasive), cribriform (what I have, which is the most common), and tubular (least invasive). Reading about this was overwhelming, especially because there isn’t much data.

Sharing my lacrimal gland cancer diagnosis with my family

Sharing the diagnosis with my wife was the hardest part. She took it very hard. She was at work when I called her because I knew she wouldn’t want to wait for the news. She decided not to research anything until she was home. Telling our kids was simpler — they know I have cancer, but that’s as much as they understand. They’ve seen me doing treatments, and my wife has shown them videos and pictures.

Making treatment decisions: advice from my care team

I have a neighbor who is an oncologist, and he helped me understand my case. He explained that chemotherapy isn’t usually effective for this cancer, but my surgeons referred me to radiation oncology and for a PET scan. After consulting with other experts at centers like MD Anderson and Mayo Clinic, my neighbor told me about chemotherapy, which can help when combined with radiation. I opted for this approach.

My treatment plan

My treatments included 30 sessions of radiation over six weeks, with a mask fitted to ensure accuracy, plus chemotherapy. Radiation is necessary because the cancer can follow nerves in the area, making it hard to remove everything surgically. PET scans confirmed that the cancer has not spread.

Side effects and coping with treatment

My chemo drug is known for causing severe nausea, but I managed it without vomiting, just stomach upset. After eating certain foods, I’d feel so ill that I couldn’t eat them again. Radiation caused exhaustion and red skin around my eye; I applied Aquaphor to prevent skin breakdown. Radiation led to brow and patchy hair loss, but I stayed as active as possible, taking only two weeks off work at the end when I was most exhausted.

Finishing treatment: ringing the gong

I finished treatment at the beginning of September. It felt incredible to be done, and I got to ring the gong at the clinic. I also got to keep my radiation mask as a memento. Not having to go in for daily treatments and experiencing less exhaustion was a huge relief. Now, I’ll have a repeat MRI at the end of November after three months to check if the cancer has returned. For at least a year, monitoring will continue every three months.

Ongoing monitoring and genetic testing

The tumors in this type of cancer grow slowly but are persistent. Ongoing scans are necessary, as spread to the lungs or liver is common. They tested the tumor for treatment targets but did not find any. I have not done genetic testing yet. There’s little known cancer in my family history.

The biggest challenge: the impact on family

The hardest part of my diagnosis has been seeing its impact on others. My wife feels it the most. My kids, thankfully, don’t fully understand. My extended family is always concerned, asking about my health. The only way I cope is by doing everything possible — including opting for chemo — so I have no regrets later.

Parenting during cancer treatment

My wife is the real hero, taking care of everything while also working. Once the kids started school, it was easier for me to rest during the day. I made an effort to remain part of their lives, doing as much as possible with them, even when exhausted. Our daughter with Down syndrome has had health challenges this year, requiring visits to specialists, so balancing everything has been extremely tough.

Scanxiety: the anxiety of awaiting scan results

There’s a real fear before each scan, about whether signs of cancer will reappear, especially locally or if it has spread. Keeping the cancer local is critical, but if it’s still there, treatment options are limited. Some patients end up losing an eye.

Survivorship and career aspirations

I originally thought I would go into computers, but I realized I did not want to sit at a desk all day. At 36, I chose nursing school — a challenge, but a rewarding one. My clinical rotations in oncology have given me a new perspective, and I plan to continue helping others, whether in oncology or any medical setting. I am open to entering oncology nursing because my own diagnosis allows me to relate to what cancer patients go through, even if it’s not the same.

Taking the boards and job search after treatment

I’m scheduled to take the nursing boards next week. I’ve already applied for jobs, as you can apply before taking the exam if it’s soon. I don’t have healthcare experience besides school, which makes finding a job more difficult, but I plan to get my foot in the door and gain experience.

The meaning of hope: my advice to other cancer patients

To me, hope means believing that good things can happen. Without hope, there would be no point to treatment or enduring the difficulty. My message is that everyone has a purpose, and helping others brings meaning. If you’re going through a hardship, keep going. Find or build a support team — it can make all the difference. My family, especially my sisters with their fundraising, and my immediate family at home, have been my main source of hope.

My advice to others

Nursing school taught me that advocacy is crucial. Be an advocate for your patients — and for yourself. Make sure your concerns are heard, and do not let anyone ignore your symptoms. If I hadn’t insisted on more testing, I might have been sent home without the right intervention. Ensure you are getting the help and attention you need.

Stephen S. lacrimal gland cancer
Thank you for sharing your story, Steven!

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Drea Finds Identity and Strength with Stage 4 ROS1+ Lung Cancer

Drea C. stage 4 ROS1+ lung cancer

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 C. stage 4 ROS1+ lung cancer

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
Drea C. stage 4 ROS1+ lung cancer
Drea C. stage 4 ROS1+ lung cancer
Drea C. stage 4 ROS1+ lung cancer
Drea C. stage 4 ROS1+ lung cancer
Drea C. stage 4 ROS1+ lung cancer
Drea C. stage 4 ROS1+ lung cancer
Drea C. stage 4 ROS1+ lung cancer
Drea C. stage 4 ROS1+ lung cancer
Drea C. stage 4 ROS1+ lung cancer
Drea C. stage 4 ROS1+ lung cancer
Drea C. stage 4 ROS1+ lung cancer

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

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

Transcript of Drea’s Interview
  1. I'm Drea
  2. When I first felt something was wrong
  3. The moment everything changed
  4. I took my health into my own hands
  5. Learning my biomarker
  6. My treatment plan
  7. How I feel about clinical trials
  8. How I’m navigating my diagnosis and being young
  9. “Hope” is a complicated word for me
  10. What I want others to know

I’m Drea

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.

Drea C. stage 4 ROS1+ lung cancer
Thank you for sharing your story, Drea!

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More Non-Small Cell Lung Cancer Stories

Laura R. ALK+ lung cancer

Laura R., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptoms: Persistent cough, fatigue, bone pain

Treatments: Targeted therapies (tyrosine kinase inhibitors or TKIs, including through a clinical trial)
Drea C. stage 4 ROS1+ lung cancer

Drea C., Non-Small Cell Lung Cancer, ROS1+, Stage 4 (Metastatic)



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
Lysa B. stage 4 ROS1+ lung cancer

Lysa B., Non-Small Cell Lung Cancer, ROS1+, Stage 4 (Metastatic)



Symptom: Severe but intermittent back pain

Treatments: Chemotherapy, radiation therapy, targeted therapy (including through a clinical trial), surgeries (lung resection, metastatic spine tumor surgery)
Ashley C. stage 4 HER2+ lung cancer

Ashley C., Non-Small Cell Lung Cancer, HER2+, Stage 4 (Metastatic)



Symptoms: Fatigue, breathlessness, persistent back pain, multiple rounds of bronchitis

Treatments: Chemotherapy, targeted therapy
Emily N. stage 4 EGFR+ lung cancer

Emily N., Non-Small Cell Lung Cancer, EGFR+, Stage 4 (Metastatic)



Symptoms: Chronic cough, persistent post-nasal drip, shortness of breath while doing simple activities, changes in voice, rib pain

Treatments: Chemotherapy, targeted therapy (tyrosine kinase inhibitor), radiation therapy
Categories
Brain Tumors Diffuse Midline Glioma Patient Stories Radiation Therapy Rare Treatments

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

Michael J. brain cancer

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

Micheal opens up about his experience with inoperable brain cancer. His story started in early 2025, when he began feeling random waves of nausea and dizziness, often after waking up or lying flat. At first, he thought he’d eaten something bad. Even his local doctor suspected simple balance issues caused by dislodged ear crystals. But when the right side of his face gradually weakened and his eyes began to twitch, he knew something more serious was going on.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

After several MRIs, doctors confirmed that Micheal had a diffuse midline glioma (DMG) in his brain stem, a rare, aggressive type of brain cancer that, in his case, can’t be removed surgically. Hearing the diagnosis left him numb, yet he leaned on his family, faith, and humor to cope. His mom strongly encouraged a second opinion, which led them to Mayo Clinic, where he underwent a biopsy. While the procedure left him with facial weakness, partial numbness in his left arm, and some vision changes, Micheal remains mobile and independent.

Michael J. brain cancer

Treatment has involved Micheal joining a clinical trial that’s focused on short rounds of radiation. Instead of doing six straight weeks of radiation, he receives two weeks at a time and then goes under observation. This approach allows his body to recover between treatments, which helps him both physically and mentally. He has had to deal with side effects like nausea, dizziness, and hair loss, but he’s grateful for the chance to keep moving forward.

Thanks to his experience, Micheal’s outlook on life has grown deeper and more meaningful. He takes time to appreciate small moments, like walking and noticing the world around him. He keeps his mental health in check by staying hopeful, joking with his mom, and setting goals for the future, like finally earning a pilot’s license when his vision improves. The advice he offers others is simple but powerful: never take life for granted, help others when you can, and always be the best version of yourself.

Micheal reminds everyone that having brain cancer doesn’t erase the possibility of joy, love, and purpose. Hope, for him, is waking up each day with the belief that there’s still life to live and a future to work toward.

Watch Micheal’s video and scroll through the transcript of his interview below to:

  • Learn the subtle symptoms that can signal something far more serious than dislodged ear crystals
  • Understand how Micheal turned a life-changing diagnosis into a story of hope
  • Find out more about the clinical trial that gave him a chance to keep moving forward
  • See the small daily moments that have brought Micheal joy in the face of brain cancer
  • Read his simple yet powerful advice for living with purpose
  • Name: Micheal J.
  • Diagnosis:
    • Brain Cancer (Diffuse Midline Glioma)
  • Age at Diagnosis:
    • 25
  • Grade:
    • Grade 4
  • Symptoms:
    • Vertigo
    • Eye nystagmus
    • Weakness on the right side of the face
    • Dizziness
  • Treatment:
    • Radiation therapy, as part of a clinical trial
Michael J. brain cancer
Michael J. brain cancer
Michael J. brain cancer
Michael J. brain cancer
Michael J. brain cancer

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

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

Transcript of Micheal’s Interview
  1. My name is Micheal
  2. When I first noticed that something was wrong
  3. The moment everything changed
  4. My mom pushed for a second opinion
  5. What my biopsy did to me
  6. I decided to go on a clinical trial
  7. The side effects I’m experiencing while I’m on the clinical trial
  8. It’s hard to accept that surgery isn’t an option for me
  9. Cancer has changed my outlook on life
  10. Hope keeps me motivated
  11. My biggest advice to others

My name is Micheal

I was diagnosed with brain cancer, diffuse midline glioma, back in April of 2025.

When I first noticed that something was wrong

I first started noticing symptoms back in early February. 

My family and I went to Minneapolis, Minnesota, to go to the Mall of America. We also saw a hockey game while we were up there. And that’s when I started waking up in the mornings and started randomly feeling very, very nauseous for some reason. I just thought I had eaten something bad. After we got back from Minnesota, I ended up calling in for an entire week, because I couldn’t lie flat any longer without getting a really bad dizzy spell. It was as if I stood still and spun in a circle and just stopped, and just let my equilibrium go. 

I realized I couldn’t just keep calling it in. So I went to my local doctor down here. They marked it up as my ear crystals, the little ones in the ear that help out with balance and everything, getting dislodged. They gave me some medication for it, and it helped. But with me being a diesel mechanic and lying flat underneath trucks all the time, a creeper was not a whole lot of fun. I would get up off it and go straight to the trash can, essentially. I decided I couldn’t stand it anymore and realized there had to be something more that was going on. 

Around the end of February or the start of March, the right side of my face started to get weaker, and I couldn’t smile or blink very well any longer on that side. I contacted my doctor about it, who took a look and said, “What I’m going to do is send you to the ENT, just to find out for sure if it’s your ear crystals or if it’s something more.” I went up to an ENT doctor in South Dakota, who ended up finding my eye nystagmus. If I looked completely to either side, my eyes would bounce back and forth. 

They were the ones who told me I should get an MRI done. But I didn’t actually get it done until closer to April. That’s sad to say, but it’s just how things went. 

The moment everything changed

When I went to the hospital and got an MRI, that’s when they found a mass.

We don’t have a whole lot of neurosurgeons down here in Sioux City. So they sent me to Mercy Hospital, where they have a neurologist. I did another MRI there, and they wanted to do surgery right away to get it out. I stayed the night. But the next morning, they said, “We’re going to send you up to Omaha, because we can’t really tell where this thing is. And they have better MRI machines there, too. And we don’t want to just go in and start trying to cut out something we can’t see.”

So they took me up to Omaha and did another MRI. And that’s how they found that the tumor was inside my brain stem. It’s called a DMG, which is a diffuse midline glioma. Essentially, it’s completely smooth. It has no borders, which means that it’s fused to my brain stem.

When they first walked in and told me about it, I was honestly very numb at first. I didn’t know what to think. And then I did something that scared many of the doctors and staff. I took off all the medical stuff that they hooked me up to so they could read my heart and everything. And then I looked at my mom and said, “I’m going for a walk.” I had my best friend, Kevin, and my wife, Becca, with me, and we ended up walking down to the church in the USMC. There, it all hit me, and I just broke down. 

It took a lot to come to acceptance. It’s not a great prognosis, but we all had plenty of faith.

My mom pushed for a second opinion

I love my mom to death. She’s the one who said, “No, I can’t accept this.” 

So after I went on my little journey, they had a couple of doctors come and find me, and they told me, “Hey, you can’t just walk off like that.” So we ended up coming home to Sioux City and my mom reached out to a couple of her friends who had cancer. They said, “Get to Rochester, go to Mayo, and get a second opinion there.” So my mom asks me out to breakfast the next day, at a little breakfast place here called Johnny Marr’s Really Good Breakfast, and she said, “Let’s just go up to Mayo, you know, they’re the best in the U.S. right now. What harm could it do?” 

So we drove 4.5 hours that day and went into the emergency room, and we were there for a while. I think we got up to Rochester at around 8 p.m., and we didn’t leave until almost 2 or 3 a.m. They had a neurosurgeon in the ER there, named Sarah, a very nice lady. She said, “I’m going to send a personal message to Dr. Parney, one of the top neurosurgeons here, and we’re going to get something figured out in two days or so. 

We got a call from Mayo saying that they wanted to schedule a biopsy. We set the appointment, went back to Mayo, and met Dr. Parney — he’s a very nice man. He said, “I can do the biopsy. There’s about an 85% chance of you coming out completely normal, like nothing’s happened. There’s also a 15% chance of some damage, and less than a 1% chance of death.” 

I signed some papers, and he did the biopsy. They ended up grabbing two samples.

What my biopsy did to me

I experienced some aftereffects when I first woke up. I couldn’t move the right side of my jaw. Obviously, there was some Bell’s palsy going on on that side of my face. My right eye doesn’t close very well; it goes about halfway down and then stops. I can’t really move my right eyebrow very well. It took a little bit to regain some of the movements in my face. I can finally chomp down like normal now. 

I have other aftereffects elsewhere in my body. My left arm, from about the pectoral muscle all the way to my fingertips, is still kind of numb. I’m starting to regain some feeling in my fingertips. 

I’m still able to walk, talk, swallow — all those things that I would normally be able to do. It’s just those aftereffects mainly.

I decided to go on a clinical trial

The treatments for diffuse intrinsic pontine gliomas or DIPGs, which are another kind of brain cancer that can appear in the brainstem, and DMGs are fairly limited. There are a lot of ongoing clinical trials. My radiologist, Dr. Breen, told me that photon radiation is the best type of radiation therapy for these types of tumors. 

When Dr. Breen and I were talking about treatment, he gave me options. The first was that I do the full six weeks of radiation in one go and see what happens. The second was that I take part in a clinical trial he organized. 

The clinical trial would initially involve just two weeks of radiation, and then the medical team would go on observation after that. If the tumor grows or spreads, they hit it with another two weeks of radiation. This approach essentially allows you to prolong the treatment. If you do the entire six weeks, I believe you’ll need to take six months to almost a full year off just to let your body recuperate and heal. 

When Dr. Breen brought up these options, my mom asked him, “If this were happening to your child, which one would you choose?” He said, “I would go for the clinical trial. A full six weeks of radiation on a very sensitive area of the body might have pretty significant effects.”

So we opted for the two weeks of radiation and to go in once a month for an MRI. We’d see how the tumor would do, and if it progresses or spreads, we’d hit it with another two weeks of radiation. 

They’ve also been talking about this particular pill, but my doctor still has to talk to other doctors and see if I’m qualified for it.

The side effects I’m experiencing while I’m on the clinical trial

After the first two weeks of the trial, I was very nauseous. I was quite nauseous during the radiation as well. And the first couple of weeks after radiation are rough. They had told me in advance that the tumor might swell a little bit from the treatments, like a boxer’s eye that gets hit too many times. But they added that it would just be an initial thing, and then the swelling would just subside. 

The first week I came home after the initial two-week period, I felt a lot of pressure in my head. I also had dizzy spells, which were pretty bad that first week. My hair also started falling out a little in the back of my head, where they were applying the radiation. But as time went on, my condition improved. I got fewer dizzy spells. My eye nystagmus has gotten better. 

Thankfully, through all this, I’ve been able to keep my mobility as normal as possible. And overall, things have been okay.

It’s hard to accept that surgery isn’t an option for me

It’s hard. It’s very hard. I won’t lie to you.

I joined some Facebook support groups and interacted with other patients who didn’t have what I had, but had successfully had their tumors surgically removed. I feel that if the tumor’s removed, I would have a little bit more of a fighting shot, because there would be nothing there that would be pushing up against the optic nerves. I do know that they can recur, of course. 

It’s still hard for me, but I’m slowly accepting it. I just keep praying and telling myself that I’ve been in my body for 26 years, whereas this thing has only been in my body for just a couple of months. I’m going to make sure this tumor dies.

Cancer has changed my outlook on life

I do have a better outlook on life now. It’s sad to say, but sometimes, it takes a life-changing event to make you realize the beauty of life in general. You get so stuck in your daily routine, from home to work and vice versa. Lately, I’ve been taking time to stop and smell the roses. Just going for walks outside, even at work, where we have this enormous parking lot for our trucks. Every morning, I’ll walk all the way down that lot and then walk all the way back to the shop, just looking around and admiring things. 

I had always wanted to be a pilot. Obviously, with my vision having been affected, that’s been put on hold for a little bit. But that being said, I have a lot of options regarding what I can do. I’ve always been big on taking things apart and putting them back together, which is why I became a diesel mechanic. Way back when, I thought that I would do that for a while and then work on getting my pilot’s license. And then this happened. 

But I’ve resolved that when my vision comes back, I’m going to go for my pilot’s license. It’s just that a couple of things have been stepped up a little bit more. 

Hope keeps me motivated

At first, before my diagnosis, “hope” was just a word. You know, you hope for this or that to happen. But now, hope has taken on a different meaning for me. It’s what brings me some joy in my life. It’s what gives me the confidence to keep going. 

It means a lot to me right now. It’s the reason I wake up in the morning. It’s the reason I keep fighting — the hope of living a long life, the hope of going to be able to spend time with my family. 

It might seem like a joke, but my mom and I have been cracking jokes lately. For example, I told her, “I hope I bury you first before you bury me.” And she goes, “In all honesty, I hope the same thing.”

That’s what hope means to me. Being able to think about the future like there’s no tumor in my head. Being able to think about having kids, seeing my grandkids grow up. That’s what hope has meant to me lately.

My biggest advice to others

Don’t take life for granted. I definitely did before. I was one of those people who would just go, “Oh, I’ll do it later.” Don’t let a life-changing event, whether it be cancer, traumatic brain injuries, or whatever it is, let you put your life on hold because you think you have time.

Nobody ever expects to get cancer. I certainly didn’t. I was healthy, there was nothing wrong with me, and my bloodwork was all fine. And it all started just by getting dizzy, because I couldn’t lie flat on my back. 

If you’re able to help someone out, go help them out. If you see that person on the side of the road with a flat tire and who doesn’t know how to change it, go help them. What’s the harm in helping them?

Always try and be the best version of yourself that you can be. Why live your life being a jerk? You can always take that with you. Nobody can ever take your personality away from you.

Michael J. brain cancer
Thank you for sharing your story, Micheal!

Inspired by Micheal's story?

Share your story, too!

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Edward H. brain cancer

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

Sam D. grade 2 brain cancer

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

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Katie’s Unusual Accident Miraculously Uncovered Her Rare Brain Cancer

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Ben’s Grade 3 Brain Cancer (Oligodendroglioma)

Categories
Chemotherapy Lung Cancer Lung Resection Metastatic Spine Tumor Surgery Non-Small Cell Lung Cancer Patient Stories Radiation Therapy ROS1 Surgery Targeted Therapy Treatments

Biomarker Testing Gave Lysa New Hope with Stage 4 ROS1+ Lung Cancer

Lysa B. stage 4 ROS1+ lung cancer

Biomarker Testing Gave Lysa New Hope with Stage 4 ROS1+ Lung Cancer

I was 40 years old, very busy, still raising my kids, and working and going to school at the same time when I was diagnosed with stage 4 ROS1+ lung cancer. Lysa’s experience highlights her resilience and serves as a prime example of what self-advocacy can lead–in her case, lead to a new therapy.

At 40, she experienced severe mid-back pain that she and doctors initially thought was just a pulled muscle. Later, however, her symptoms worsened, leading to a shocking diagnosis: lung cancer that had already spread to her spine.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Though her lung cancer was initially responsive to chemotherapy, Lysa was determined to learn more about it. This pushed her to reach out to fellow lung cancer patients on online patient communities. She also learned about biomarker testing, which empowered her to seek a second opinion, ultimately undergoing surgery solely to obtain tissue for comprehensive biomarker analysis. The result? She discovered she was positive for the ROS1 mutation. This qualified her for targeted therapy that significantly improved her quality of life.

Lysa B. stage 4 ROS1+ lung cancer

When her non-small cell lung cancer progressed, Lysa didn’t settle. She advocated for herself again, enrolling in a clinical trial that has kept her stable. Thanks to targeted therapy and clinical trials, she’s celebrated many milestones, including her daughter’s graduations and the birth of her first grandson, as well as other important moments with family and friends.

Lysa’s stage 4 ROS1+ lung cancer experience shows how critical biomarker testing and clinical trials are in expanding treatment options. Her story is a testament to the power of self-advocacy, community support, and the importance of never giving up on seeking better care.

Watch Lysa’s video and read her story below to:

  • Find out how her back pain revealed her life-changing diagnosis
  • Learn why biomarker testing became Lysa’s game-changer
  • Discover how a targeted therapy and a clinical trial gave her more time with her loved ones
  • See how Lysa’s self-advocacy with ROS1ders changed her stage 4 ROS1+ lung cancer care
  • Meet the woman who thrives beyond her diagnosis
  • Name: Lysa B.
  • Age at Diagnosis:
    • 40
  • Diagnosis:
    • Non-Small Cell Lung Cancer (NSCLC)
  • Staging:
    • Stage 4
  • Mutation:
    • ROS1
  • Symptom:
    • Severe but intermittent back pain
  • Treatments:
    • Chemotherapy
    • Radiation therapy
    • Targeted therapy, including through a clinical trial
    • Surgeries: lung resection, metastatic spine tumor surgery
Lysa B. stage 4 ROS1+ lung cancer

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

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

Table of Contents
  1. About Me
  2. When I First Noticed That Something Was Wrong
  3. The Moment Everything Changed
  4. How I Learned About Biomarker Testing
  5. Learning I was ROS1+ and Taking the Only Treatment Option Available Then
  6. I Joined a Clinical Trial When My Stage 4 ROS1+ Cancer Progressed
  7. Targeted Therapy Has Changed My Quality of Life for the Better
  8. Anyone With Lungs Can Get Lung Cancer
  9. My Advice to Others

You think you’re doing what you can to take care of yourself. I quickly learned that none of that really matters. If you have lungs, you can get lung cancer.

Lysa B. – Lung cancer patient

About Me

Hi, I’m Lysa. 

I was diagnosed with stage 4 non-small cell lung cancer with an ROS1 mutation.

Lysa B. stage 4 ROS1+ lung cancer
Lysa B. stage 4 ROS1+ lung cancer

When I First Noticed That Something Was Wrong

I had just graduated from college. I was 40 years old, very busy, still raising my kids, and working and going to school at the same time. 

I started having back pain. It wasn’t a typical lower back pain that you’d get by straining yourself doing something, though that’s what I kept telling myself. It was a little bit higher, right in the middle of my back. 

My husband and I took our daughter to California for a vacation, and we visited SeaWorld in Disneyland. There were two nights when I would lie down, the pain was so bad that I felt like I couldn’t breathe right, and I couldn’t sleep. My husband said, “We have to go to the E.R., we have to figure out what’s going on.” 

We went to the E.R. around midnight. There, they were concerned about my kidneys because of the back pain. But my kidneys were fine, so they thought I’d just pulled a muscle. They gave me a few muscle relaxers and pain medicines to get me through the weekend, and they told me, “Follow up with your doctor when you get home.” And the next day we went to Disneyland for 12 hours. 

I agreed that I must have just pulled a muscle. Everything seemed to be fine. I was 40. I was healthy. I was a runner. I was in great shape at the time, or so I thought. So you shouldn’t ever believe that cancer is not on your radar.

The pain was intermittent, so I was able to ignore it and push through. I was taking a lot more Tylenol at that point, icing the area, and getting massages. But it wasn’t getting better. 

I went on a vacation to see my family in Kentucky, and the pain got so bad coming home from the airport. I was traveling alone, and I remember calling my mom, crying, and telling her, “I can’t even walk through the airport right now.” She went, “Get a wheelchair, just get home. We’ll take care of it.” 

The next morning, we went to the E.R. again, this time to an E.R. near where we lived. They did multiple tests, a CT, a full MRI of my entire spine to try and see where the pain was coming from, as well as a chest X-ray.

Lysa B. stage 4 ROS1+ lung cancer

I was in great shape at the time, or so I thought. So you shouldn’t ever believe that cancer is not on your radar.

Lysa B. – Lung cancer patient
Lysa B. stage 4 ROS1+ lung cancer

The Moment Everything Changed

Several hours later, the E.R. doctor came in and told us, “You have to sit down. It appears that you have stage 4 lung cancer that’s already spread to your spine.” 

I had just lost a friend to lung cancer about five months before that, and she had only been 43. So I immediately thought, “Oh my God. Who’s going to raise my kids?” My son was 19, but he still needed me. My daughter was 11.

You think you’re doing what you can to take care of yourself. I quickly learned that none of that really matters. If you have lungs, you can get lung cancer. Unfortunately, sometimes you’re just dealt a crappy hand.

How I Learned About Biomarker Testing

Right after I was diagnosed, I found an online forum where I started talking to other patients. Mostly, I just connected with them and tried to seek support. And through that forum, I learned so much about lung cancer. 

It’s not one disease. You don’t just treat it one way. And there are biomarkers, which are proteins that drive your cancer to grow. They are specific to certain lung cancers, and they typically tend to be in younger women, mostly under 50.

I did talk to my oncologist about it, but I was having a great response to chemo at the time. So she just said, “When the time comes, we’ll look into that.” I was okay with that for a while, and it wasn’t until I had progression about 15 months later that we decided to try and do another biopsy to get enough tissue to do biomarker testing.

At that point, my tumor had a lot of scar tissue around it. It was in a hard-to-access spot. We had done two needle biopsies through my lung, which were inconclusive and didn’t have enough tumor DNA actually to tell if there were any biomarkers or not. So my oncologist wanted to try another chemotherapy, and at that point I said, “There’s got to be something better than this.” And I switched oncologists.

Lysa B. stage 4 ROS1+ lung cancer
Lysa B. stage 4 ROS1+ lung cancer

Learning I was ROS1+ and Taking the Only Treatment Option Available Then

Within a couple of weeks, I was seeing a new doctor, Dr. Vogelsang. He pushed for me, and that validation helped me realize that this man was going to help me do whatever I needed to do for however long I wanted to do it.

At the time, it took several weeks to get my results back. It was stressful, and I was trying to be hopeful. Plus, I was recovering from surgery. 

My phone rang at 10 p.m., and I don’t normally answer my phone if I don’t know who’s calling me, but I answered, and it was Dr. Vogelsang. He said, “We’ve got great news, your results are in. And you’re ROS1-positive.” 

He was super excited about it, and I was too. I knew that meant I was eligible for targeted therapy. I wouldn’t have to do chemo anymore. So it was great. It was literally a game-changer for me.

By the time I found out what my biomarker was, it was 2013. I had already been diagnosed with and living with lung cancer for 18 months. I started getting nervous around that time; it was like I was feeling I was on borrowed time. I wondered when it was going to quit working. 

I was eligible for targeted therapy. I wouldn’t have to do chemo anymore… It was literally a game-changer for me.

Lysa B. – Lung cancer patient

I Joined a Clinical Trial When My Stage 4 ROS1+ Cancer Progressed

We added chemo to my targeted therapy in the hope that it would get me at least to the end of that year, seven or eight months away, before I might start on that drug. Well, I remained stable with that combination for another five years, so I was able to stay on my first targeted therapy for ten years. 

By the time I progressed again after those five years, I had a new biopsy. I did have new metastases in places I’d never had before, and it seemed to be fairly aggressive. It went from nothing on a scan to not significant to more than doubling in size two months afterward. I knew we had to do something quickly. 

We did a biopsy on my 50th birthday. That was fun. And based on those results, I decided to go on a clinical trial. So in June 2023, just over two years ago, I started a phase one clinical trial that I had to travel to Tennessee for.

I’m still in that trial. I actually went again just last week. I just got my scan results back, and I’m still stable. So I’m extremely happy about that.

I feel pretty good on this drug, which is nice. And I don’t have to do chemo anymore. Because of this drug, I’ve lived long enough to see my first grandson. The drug is in pill form. I’m able to have my scans at home.

Lysa B. stage 4 ROS1+ lung cancer
Lysa B. stage 4 ROS1+ lung cancer

Targeted Therapy Has Changed My Quality of Life for the Better

When I was diagnosed, my youngest was 11, and she was in fifth grade. Honestly, my first goal was to see her graduate from high school. I wanted to give her that much, at least, to get her there. Of course, I was the loud lady at her graduation. I was so excited and crying and bawling. 

I’ve since gotten to see her graduate from college. I have just had our first grandson this year. And my son was 19; he was older, but he still needed some help, and I have been able to see him flourish and find his way in this world. 

My husband and I love to travel and eat. I have a great friend group here. We do trivia every week. My parents live two miles from me; I just hung out with my mom all day the other day.

I know I’m lucky that I can do those things. I’ve always been such an on-the-go person, the type who has to take care of everything right now. I can’t go to bed till the dishes are done, that sort of thing. I need structure, and I might have been a little extreme. 

Now, I don’t care if there are dishes in my sink. I try not to let external things get me down. And I focus on trying to find the joy in every day. 

My biggest happiness is when I’m with my family and my dogs. I love my dogs.

I try not to let external things get me down. And I focus on trying to find the joy in every day. 

Lysa B. – Lung cancer patient

Anyone With Lungs Can Get Lung Cancer

One of the first questions many people ask you when you tell them you have lung cancer is, “Did you smoke?” It used to make me angry, because it felt accusatory. But I really think when people ask that question, if they’re nonsmokers, they’re trying to be like, “Oh, well, that’s why you got it.” 

I honestly don’t think they come from a bad place, but it makes you feel bad, like you have to defend yourself. My grandmother died of lung cancer, and she was a smoker her whole life. Can we blame her for her death? 

Everyone deserves access to care. We have lung cancer. It doesn’t matter how we got it. And there are many risk factors out there, so many that we don’t even know how to correlate them, though we do know that they contribute to lung cancer.

I have friends who are vegetarians, yoga instructors, lifelong runners, and so on. People who thought they did all the right things. And yet we still got lung cancer. I still ended up getting stage 4 ROS1+ lung cancer.

Cancer doesn’t discriminate.

Lysa B. stage 4 ROS1+ lung cancer

You do not have to be alone.

Lysa B. – Lung cancer patient
Lysa B. stage 4 ROS1+ lung cancer

My Advice to Others

There are patient groups for most of these biomarkers. There are maybe a dozen online. Many of them have websites. You can look them up and join them. You do not have to be alone. 

They are a huge source of not only support but also knowledge. Like the ROS1ders in particular. It is scientifically vetted by researchers, as well as all of our information about the drug options. What works for us, what doesn’t, how to deal with side effects. There are patient stories on there. There is a large community out there that many people might not know exists. I am proud to be part of ROS1ders. 

These patient groups aren’t just for other patients. We’re seen and invited to medical conferences now. Doctors and researchers collaborate with these groups to do better for the people in our community. So please reach out to them if you have a biomarker. It’s so important.

Lysa B. stage 4 ROS1+ lung cancer

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

Lysa B. stage 4 ROS1+ lung cancer
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