Everything was Fine Until It Wasn’t: Shauna’s Story of a Cold, a Cough, an X-ray and Stage 4 ALK+ Lung Cancer
Shauna was living her healthiest, most active life at 51 when everything shifted. After what seemed like a simple cold in the fall of 2018, she noticed a cough that wouldn’t go away. A quick trip to urgent care during her lunch break led to an unexpected X-ray, and within days, she learned there was a mass in her lung. Not long after, a biopsy confirmed the diagnosis: stage 4 ALK-positive lung cancer.
Naturally, the news was shocking. Shauna had no family history, had never smoked, and had just sent her kids off to start their own lives. She and her husband were busy, working full-time, and looking forward to the next chapter. Instead, she had to face something that seemed impossible.
From the start, Shauna leaned into both her medical team and the online ALK-positive lung cancer community. She discovered support groups on Facebook, where people openly shared knowledge and resources. That encouragement helped her seek second opinions from specialists in Nashville and Boston, giving her confidence in her care. Although she stayed with her local oncologist for several years for convenience, she eventually transitioned to a larger hospital in Indianapolis to explore clinical trials and gain access to more advanced care.
Shauna’s treatment has centered on targeted therapies. Her first tyrosine kinase inhibitor (TKI) kept her stable for about five years, even though she had to adjust her dosage due to side effects like bradycardia and pneumonitis. She also underwent radiation for specific spots of growth along the way. (Editor’s Note: A tyrosine kinase inhibitor is a type of targeted therapy used to treat cancer. Tyrosine kinases are enzymes that may be too active or found at high levels in some types of cancer cells, and blocking them may help keep cancer cells from growing.)
By 2024, when new nodules appeared, she switched to a second TKI. Thankfully, her scans are stable again, and she feels better on this newer medication, with fewer side effects and more energy.
Through it all, Shauna has prioritized mindset and lifestyle. She focuses on staying as healthy as possible, embracing a mostly vegan diet, exercising, and paying attention to how her body responds. Though stage 4 ALK-positive lung cancer is treatable but not curable, she chooses not to live in fear. Instead, she invests in her relationships, grateful for every moment she’s been able to spend with them.
She’s also thinking ahead about clinical trials, recognizing how important they are for advancing treatment and offering patients more time. Her biggest challenge is knowing her time may be cut short, but she finds peace in her faith and purpose in encouraging others. As she puts it, life is short for all of us. She reminds people to live fully, not to waste days in worry, and to be kind.
Shauna’s story highlights the importance of support, second opinions, staying proactive, and holding onto hope while navigating life with stage 4 ALK-positive lung cancer.
Watch Shauna’s interview to find out more about her story:
How a lingering cough led to a life-changing diagnosis
Why she turned to online communities for knowledge and support
The role her husband and family play in her care and outlook
What clinical trials could mean for her and others with ALK-positive lung cancer
Her message about choosing hope and living fully each day
Scroll down to read the transcript of Shauna’s interview.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
My name is Shauna. I live in Indiana. I was diagnosed with stage 4 lung cancer in 2018.
My family and friends would describe me as dependable and fun-loving.
When I first noticed something was wrong
Early in the fall of 2018, I had an illness, a normal cold, but my cough stayed after a couple of months. It didn’t go away. During lunch break at work, I went to an urgent care clinic where they did an X-ray and found a mass in my right lung. The person who did my X-ray talked to me about seeing the mass and told me I would need to see a pulmonologist and get scheduled.
As you can imagine, I was shocked. I scheduled with a pulmonologist and he scheduled a biopsy. I had a needle biopsy and all the scans that came after, and the biopsy came back positive for cancer.
The moment everything changed
I had just turned 51 that October and I was diagnosed in November. I was in the best shape of my life. My two kids had just flown the nest, and my husband and I were still working full-time. I was shocked. I had been eating well and exercising. I don’t have a family history of lung cancer. I have never smoked. It came out of nowhere. It was upsetting, for sure.
I searched for a different opinion
I live in a more rural area in Indiana, so we’re not close to any big hospitals. I started with a pulmonologist who was local and very good, and he was able to do what I needed done and diagnosed me. Then I found an oncologist who was local as well.
I came across a Facebook group for ALK-positive lung cancer, which helped a lot. It’s very educational, informative, and supportive. The people in that group have a lot of knowledge and that steered me to think of getting a second opinion, so I did. I went to a specialist in Nashville, Tennessee, and at Mass General in Boston, who is an ALK-positive lung cancer specialist.
I stayed with my general oncologist for about five years because I knew I was getting the standard of care. The treatment would be the same as I would get anywhere, and it was convenient being close to home. But since then, I have switched my care to a bigger hospital in Indianapolis because things are getting a little more complicated and I know I’ll have better access to clinical trials. It’s just a better facility.
It was pretty easy for them to tell, even with just the X-ray. They could see that it was in both lungs. I have innumerable little nodules in both lungs and one primary tumor in my right lung, so that made it stage 4.
How I learned about my biomarker
One of my second opinion doctors, who I see now at the Indianapolis hospital, is the one who submitted my sample to a company for biomarker testing. Everyone on my team knew what direction to go. I didn’t have that problem at all. Right off the bat, I’d say within a few weeks, I came back as ALK positive. I knew that there was a mutation and the thoracic oncologist told me that I likely had a mutation because of my age and some other things.
My treatment plan
Immediately, they started me on my first tyrosine kinase inhibitor (TKI) and at the full dose. I had some of the more serious side effects right away, like bradycardia and pneumonitis. My oncologist would lower the dose each time I experience an event like that.
At the time, that was the best and newest TKI available. We decided to stay the course and see because it had been proven with others that you could take half the dose and have it still be effective. In my case, that’s what we found. I was able to take half the dose and all the side effects went away. I was stable. I was never no evidence of disease. It probably shrank my original tumor about 40% and I’ve been stable since that time.
I was also able to scale my dose back up. By the last couple of years on that TKI, I was taking the full dose again with none of the same serious problems. I was on that first TKI for about five years until I started having some new spots in my left lung.
Then I had radiation. I don’t know what year that was exactly. They were about a year apart from each other. The radiation was targeting a certain spot where they thought they saw growth. Then I was stable and continued to stay on my first TKI.
In mid-2024, we started noticing some more growth in different spots. We were beginning to realize we had probably run out of time on my first TKI and that maybe it was time to switch because there was a newer drug out by that time. Research is so important because if I didn’t make that jump, that would have been it.
I started on my second TKI in August 2024 and that’s what I’m on right now. I have had some questionable scans, but my last scan in Indianapolis read stable.
What life is like on a targeted therapy
I haven’t had a lot of problems with side effects on either drug. I know I had a couple of serious ones off the bat because I was probably taking too big a dose for my body to adjust to it, but then I was able to go back to the full dose.
With the first TKI, I had a lot of bloating, awful constipation, and some sensitivity, but the side effects are nothing compared to the drug working. To me, that’s the most important thing.
When I was out in the sun, I learned to wear sunscreen, a rash guard, and a hat. I got used to how long I could stay out in the sun without burning. I found something to use for the constipation.
The second TKI causes a little neuropathy and tingling in the hands. I live with it, but that went away somewhat. I don’t even notice it now. I have so much more energy on this TKI as well and not as much weight gain. I’m very happy with this, as long as it’s working.
I thought that I would throw everything at it and make sure my body was in optimal position to fight what may come. As we know, it’s terminal, so I’m trying to live as long as I can. I’ve always been pretty healthy. I always exercised and took care of myself, but I’ve taken it to a whole new level now. I’m mostly vegan and eat anything that’s anti-cancer and strengthens my immunity.
I’m considering clinical trials
I came back from a conference in San Diego, where they talked a lot about clinical trials. The ALK+ Summit was there. They have a yearly conference that’s so informative because they have amazing doctors and patients who talk.
Clinical trials are the only way these new drugs will ever come into play. They have to go through trials to be approved so that everyone can benefit. I’ve spoken to my oncologist and though it’s not something we’re necessarily looking for yet, it’s definitely on my mind.
What my biggest challenge has been
My future as a grandma is gone. I have seven grandchildren and I was able to see a lot of them be born since my diagnosis. I feel for the younger moms with kids at home. I’m thankful that I was able to raise my kids.
Cancer is so prevalent everywhere you look now, in younger and younger people, and all kinds of cancers. I can’t say I was necessarily that surprised. I was surprised at what type of cancer I ended up with, but it happens everywhere.
I would love to be on treatment indefinitely if it would last that long and if this could be treated like a chronic illness.
My message of hope
I have my faith. My hope is in my eternity. I realize that life is short. It’s short for all of us. It’s but a vapor. My life here on earth may be cut short, but I live each day to the fullest and try to be kind to everyone. I’m enjoying my family and friends, and I try to have a balance in life with this diagnosis.
I have my main people: my two daughters, my sister, my husband, and my parents. Those are the people whom I feel like I could go to right at the beginning and anytime I’ve needed them.
What I want others to know
Life is short. Take each day as a new chance. Don’t be scared. Don’t live your life in fear. It took me about two years before I was able to not worry anymore. I’m not going to worry about this one more day. I’m going to live like I have all the time in the world.
How Stage 4 Hodgkin Lymphoma Changed Amina’s 20s, But Not Her Spirit
When Amina was diagnosed with stage 4 Hodgkin lymphoma (4B) in August 2021, her life as a 21-year-old dancer in New York City turned upside down. She had been training in school while navigating the pandemic when her health began to slip in confusing ways. At first, she thought it was stress, COVID, or exhaustion. But when she couldn’t climb stairs without feeling faint, woke up drenched in night sweats, and lost her appetite, she knew something was wrong.
Unfortunately, getting answers wasn’t easy. Without a primary care doctor and stuck between pediatric and adult care systems, her diagnosis was delayed for months. She had to advocate fiercely for herself, even paying out of pocket for scans when appointments kept falling through.
Eventually, an MRI and biopsy confirmed what doctors had been circling around: Hodgkin lymphoma. Hearing the official words was scary but also validating. For months, Amina had felt invisible in the healthcare system. Finally, someone acknowledged her pain and gave her a path forward. Her oncologist at Johns Hopkins immediately recognized the seriousness of her case, which gave her a sense of trust and relief.
Amina’s treatment lasted seven months and included intense chemotherapy. While she was grateful to receive care as an outpatient, the physical and emotional toll was heavy. She lost her hair, felt disconnected from her body as a dancer, and struggled with neuropathy in her feet. She also wrestled with body image challenges while trying to keep up with the demanding culture of dance. Still, she leaned into small joys, like having ice cream when nothing else tasted good, and gave herself space to rest when she could.
Being so young in a cancer ward was isolating, but Amina refused to stay silent. She began sharing her story on social media, connecting with other adolescents and young adults (AYA) navigating cancer and health inequities. Many reached out, saying they felt like they slipped through the cracks. What started as venting grew into a form of advocacy, helping others feel seen.
Amina’s family, friends, and community were her anchors. Friends showed up with flowers, trips, and support; her parents carried her through appointments and recovery. Later, when her father was diagnosed with acute myeloid leukemia, she was able to use her experience to help him access care quickly.
Now in remission, Amina embraces what she calls “thrivership” — living with intention, protecting her energy, and finding happiness wherever she can. She wants other young people with cancer to know that life doesn’t have to follow a strict timeline. Progress may look different than planned, but with patience, connection, and self-advocacy, it’s still possible to create a fulfilling and beautiful life.
Watch Amina’s video or read the interview transcript below to find out more about her story:
From dance rehearsals to chemo infusions, Amina shares the raw reality of being young with cancer
Why social media became her lifeline during treatment
The surprising way her cancer diagnosis helped her father
How survivorship reshaped her priorities and sense of joy
Name: Amina V.
Age at Diagnosis:
21
Diagnosis:
Hodgkin Lymphoma
Staging:
Stage 4B
Symptoms:
Severe fatigue
Shortness of breath
Night sweats
Bloating and stomach distension after eating
Abdominal pain
Little to no appetite
High fever
Lump in the pelvic area
Treatment:
Chemotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I was diagnosed with stage 4 Hodgkin lymphoma (4B) in August 2021.
I’m originally from Washington, D.C., but I live in New York City now. I’ma professional dancer, so that’s my 9 to 5. When I’m not performing, I also work as an educator and rehearsal director for young artists and teaching dance. Dance is my number one love and my number one passion, and it’s also what I do for fun.
My friends would say that I’m a bubbly person. I’m definitely very friendly, and when I’m out with my friends, I’m very outgoing. I like to have a good time, try new things, and new experiences. Above all else, I always like to show up for my friends and the people I love and who love me. I believe in loyalty and having each other’s back.
There’s a special photo that stands out to me right now, which is a picture of me and my dad at Light the Night, which is an event by The Leukemia & Lymphoma Society, now called Blood Cancer United. Then Leukemia & Lymphoma Society would hold an event for cancer survivors and honorees, like advocates in the cancer community, and I was there with my dad and they were honoring me. But at that time, he was also about to find out that he had acute myeloid leukemia, so it was a moment that symbolizes me finishing my journey and him starting his. Looking back, it’s crazy and special.
When something first felt off
I first found out I was sick in my final semester of training. I went to The Ailey School for four years. It’s conservatory-style training, pretty much at the highest degree, preparing you for a professional career as a performer. It was also during the COVID-19 pandemic, in the fall of 2020, and everything was messed up. We were in masks. Everyone thinks that a cold could be COVID. I had been feeling off for a while, but I chalked it up to flu season. It’s COVID. I have to quarantine. But then when I went back to school and my regular routine of five classes a day, I found that I was super fatigued at the end of the day. It wasn’t the regular kind of tiredness. I couldn’t go up one flight of stairs. And in New York City, you’re walking everywhere all the time. I have to walk up the stairs in my apartment building and walk up the stairs to go to the subway. Tthere were some days where I felt like I was going to pass out. That was red flag number one.
The second red flag was night sweats. I would wake up in the middle of the night and my clothes would be drenched and my bedsheets were wet. I would always joke and say it was menopause, but I was 21, so this was not menopause. Why am I getting hot flashes in the middle of the night?
The third red flag was I had little to no appetite, and whenever I did eat, my stomach would swell and distend, so much. I would have cereal in the morning and you would think I went to an all-you-can-eat buffet. Then I would have to go to class and be in a leotard and tights with a bloated stomach. It felt awful.
I first noticed these symptoms in December 2020. I got it checked out in 2021, around early January and February. But they continued until my treatment started, which I didn’t start until August.
There was a big delay in my diagnosis
There was a lot of trial and error. I didn’t have a primary care physician. I was there for school, so I relied on minute clinics. But the one doctor I had a good relationship with was my OB-GYN. I felt a lump in my pelvis, which I thought might be a cyst, so I went to her. She recommended getting an ultrasound and doing bloodwork, and that’s when we found that my blood levels were off the charts. She passed me along and pretty much said, “This is out of my jurisdiction. However, I highly recommend you get an MRI and take this to a hematologist.” That then led to months and months of trying to get appointments because this was in 2021, so getting a doctor’s appointment was difficult in the city.
I learned that if you’re not 22, you’re still considered pediatric. I was making appointments at grown-up doctors’ places because I thought I was a grown up, and then they would get canceled because my insurance was saying I was still a kid, so I needed to go to the children’s hospital. I think that led to a lot of delays in diagnosis because I wasn’t officially diagnosed until July.
I ended up having to take matters into my own hands and get an MRI at an out-of-network clinic, and that’s when they found the inflamed lymph nodes. But from there, I had to wait another month or two for a biopsy appointment. In between that time, my symptoms got increasingly more aggressive. I ended up being hospitalized and that’s when they told me that I might have cancer.
My boyfriend was with me at that time. We were living together during this whole process. My parents had also been aware that I’d been sick and they’d seen the MRI results, which showed the inflamed lymph nodes. Everybody seemed to have a clue that I possibly had lymphoma, except for me, because I didn’t know what that was. Everyone was on high alert. I had a fever of 104℉ one night, so my partner took me to the emergency room.
I was stressed and afraid. However, it got to a point where it’s like, “Look. This is my last semester of school. I’m still dancing in a mask. We’re in boxes, social distancing. I either have to think about whether I want to finish strong so I could potentially get the job or take care of my health and set myself up for the long term.” That was the decision I ended up making. I would miss a lot of classes because I had to go to doctors appointments or I would try to be as transparent as possible with my teachers, sharing the information I have, and letting them know that I wasn’t at 100% and I don’t know why, but that I’m doing my best.
I’ll be honest, advocating for myself didn’t come easy to me. I was trying to do everything the right way, following the doctor’s orders, listening to my parents, and waiting. But when, time and time again, doing things by the book was not working in my best interest, that’s when I said, “I need to get this done. Where in this city can I get an appointment tomorrow? And if it costs a lot, then that’s just the price I have to pay, but I need to know something.” The waiting was driving me crazy.
I got treated in D.C. That came about because of all the hoops I had to jump through on my own in New York. I was young. My boyfriend was also young at the time, so it was a lot for us to manage on our own. My parents wanted me to move back home and get treated there so that they could help.
How I found my care team
It was a very fast-moving process because everything took so long that we tapped into our family and friends resources. I was very fortunate that my mom had a cousin who worked at Johns Hopkins and she helped with speeding along the process of getting an appointment and getting all of my pathology from New York passed along to the hospital in D.C. so that I can be seen and treated quicker.
When I met my oncologist, he was the first doctor who validated how I felt. They kept saying I might have lymphoma and the whole hesitancy to be transparent with me was that I was young, so they didn’t want to be negative or dampen the mood too soon without having all of the answers. I understand that perspective, but I felt like I was dying. For them to say that it might not be anything that serious sucked because what, was I going crazy? I knew I wasn’t. But he was the first one to look at me and say, “Yes, you are very sick. Yes, this is 100% lymphoma. We’re getting your pathology. However, you’re checking all the boxes and we need to get you started next week.”
I ended up trusting him 100% because he looked at me, did the exam, looked at my reports, and shared in my frustration. Even without the pathology to 100% confirm it, everything else lined up with a patient who has Hodgkin lymphoma. The outlier was how young, active, and healthy I was. Besides that, everything else made sense.
The fact that he shared that frustration and validated how I was feeling made me feel close to him and made me pretty much trust him with my life because that’s what you’re doing when you’re choosing an oncologist.
When I heard the words “you have cancer”
I was very emotional. It was a relief to have an answer. I remember having a little bit of jitters or goosebumps because it’s a tough reality to face. However, on the flip side, it was nice to have an answer to all the questions that I had swirling around in my head for months. I’m not immunocompromised. It isn’t COVID or the flu. This is exactly what it is and here’s how we’re going to treat it. Having that clarity helped me find peace, oddly enough. I know I was going into the hardest thing I was ever going to have to do in my life and that some people don’t even have to face thankfully, yet I felt calmer having that clarity.
What my treatment plan looked like
I had to do seven months of chemo. It was rough. Chemo sucks. It literally zaps you of any energy. However, in the beginning, I think after my third cycle, I was tired, but feeling better. It was the necessary evil that I had to go through in order to get cured. It’s just hard. Especially since the treatment plan that I had included a specific drug that causes bone pain and another drug that makes you lose all your hair, so it’s tough. I felt like I was losing parts of myself in a sense. I didn’t have any energy. I didn’t want to socialize with people. I wanted to be alone after my infusion days. I would get treatment once a week and then I would have a week to recover. On my off weeks, I felt a little better every time. Every off week, I was getting stronger and stronger and stronger. At the moment, it’s not fun at all, but then the results are worth it.
I was fortunate enough to be an outpatient. I would be in the hospital for a full workday, around 6 to 8 hours a day, and then my dad or my mom or whoever was there with me would take me home.
They gave me this body patch and it would administer medication at home as well.
Managing the side effects of chemotherapy
I developed neuropathy in my feet, which was a tough part of recovery, especially since I need them for my profession. After a few months, I was able to start dancing again. I was even ambitious enough to try and take classes every now and then while I was still getting treatment. It wasn’t at the level I was before I got sick — that took a lot of time — but I was fortunate enough to have a mentor who gave me a space to quite literally fumble around and reconfigure myself. I appreciate her for that because I think that allowed me to get to where I am today.
I didn’t like the way food tasted, which was a big one. I didn’t want to eat anything except Ben and Jerry’s ice cream. My parents would be so concerned, saying I couldn’t eat ice cream because it’s sugar. I said, “Mommy, I have blood cancer. It’s different. And the doctor says I need to put weight back on, so I should eat lots of ice cream.” That was the only thing that I could taste, something sweet
With the chemo, they gave antiviral medication and that made me very agitated. I appreciate my family for being patient with me during that time because I’m sure I was being a diva. Being on different medications puts you in a loopy state. There were a lot of people who visited and were with us in the house, and though I wanted to be social, at a certain point, I would get drained and shut off. Even after I finished, for a few months, I would find that still happening. It’s like this fog went over my brain. My eyes were glazed over and I completely checked out.
It was hard, honestly, because I felt like I had to fake it and make it seem like everything was okay. I didn’t have an explanation at that time as to why I felt awful or uncomfortable. As a young dancer, I was struggling with body dysmorphia. I had to stand for an hour and a half in front of the mirror and even though all I had was cereal for breakfast, I’m bloated and my clothes don’t fit right. I feel uncomfortable, but I still have to go through my day pretending like everything is okay. I have to show up and give the teacher energy.
There was even one moment when I did this photo shoot and the photographer was frustrated with me because I was very quiet and timid, and it was coming through in the photos; in reality, I was just exhausted. I felt tired and everything about being in that space was draining in the moment. It was tough because my job and what I was doing in school was so physical, so there’s no way to dial it back. I either have to push through and push myself to the limit, which often happens. That’s how I got hospitalized. Or I give up and I’m not good at giving up.
How I navigated having cancer so young
I was the only young person in the infusion ward. Whenever I would go, people always thought my dad was the patient, but he was bald by choice and I wasn’t, so that felt isolating
Beyond that, I had just finished school in New York and was building my own life. I just got my own apartment and then I had to leave it all behind and go back home. In a lot of ways, it felt like I was going back in time, like going back to square one. For a little bit, it did break my spirit. I felt defeated. I relied a lot on finding ways to entertain myself and fill my time. Being Gen Z and in my 20s, TikTok and Instagram were my coping mechanisms.
What I think was unique about me being a young person with cancer is I made the choice not to suffer in silence, so I told my friends about it and posted on social media about it. Through that, I was able to find a community of people going through similar experiences at my age. Even though they weren’t physically there with me, I found them online.
When I was in treatment, I was connecting with a lot of people who were asking about my experience and asking for advice for themselves or for loved ones. Even if they didn’t have cancer and were dealing with other health issues, they would ask, “How did you push through? The doctors keep telling you no or to come back when it was worse than it is now, instead of treating you.” By sharing my experience, it opened a can of worms on the fact that a lot of young people, regardless of a cancer diagnosis or not, have this issue where we slip through the cracks of the healthcare system, whether we’re still on our parents insurance or not, and we’re still treated as kids even though we handle all of our own finances and do things on our own. Or we just got booted off our parents’ insurance, so now what do we do?
Through that, I connected with a young woman who was in India getting treated for breast cancer. She was thanking me for sharing my story because she was 30 and she thought that she was the only person dealing with this. I also found a lot of other nonprofits for women like me or young people like me who feel isolated and connect them to each other. What I thought was just me venting turned into a form of advocacy, so when I saw that there was this interest and need for connection, I stuck with it and have met so many beautiful people because of it.
It’s important to have these conversations so that other young people can learn from my “mistakes.” I don’t want to say mistakes because I didn’t know, so by sharing, it hopefully gives others information so that they are more informed and knowledgeable, and feel empowered to speak up for themselves and not take things in blindly.
The hardest thing was accepting that everything was going to change. Not just biologically, but even around me, things were going to change, and a lot of those things would be permanent. My relationships with people, with friends whom I had in New York, and with my community would shift — some for the better, some not so much. I also felt like the world was moving on without me, which was a scary feeling. I needed to focus on getting better, but also, what does life look like outside of this? In that moment, the most frightening thing was the unknown and the change.
I was a little lucky to have had family members who had battled cancer in the past, even though it was in a different form. I have a cousin who is a breast cancer survivor and took her experience of being diagnosed in her 30s and turned it into advocacy, so I had her as a role model. This is hard. Everything is going to change. However, you will come through fortified and stronger. In the moment, it’s hard to believe when people tell you good things and they give you advice. You want to take it all in, but there’s a little voice in your head that says, “I don’t know.” Having her guidance definitely helped a lot.
I had to have trust because in that instance, there’s nothing I could control. My body literally woke up one day and said, “We’re going to shake things up,” and there was nothing I could do about it. Once that switch is flipped, I have to take the necessary steps to fight. I know sometimes that can be tough for people, but I’m comfortable with the fact that I had to battle cancer because it’s literally a war inside my body. I either make the choice to take steps against it or not. I feel like you have to fight against it, not just with how you treat it, but also with your mindset and your mentality. Hope and positivity and a little bit of delulu were all I had.
The sky isn’t even the limit anymore because I’ve been faced with my own mortality. I thought that my life was going to be cut short at 20-something. I’m 26 now and have a whole lifetime ahead of me, so I’m going to do everything I possibly can.
My support system helped get me through the hard days
I have an amazing family that came together to support me during this time, even our community in DC showed up, like my parents’ friends who supported them. I think it’s important for caregivers to also receive support. When I don’t have the energy to greet people, they were still there for my mom and my dad, which made me happy because they’re struggling with this, too. Even though I’m the one who’s actually receiving the medication, they are invested emotionally and financially, and sacrificing their time to be there for me, so I’m glad that they also received support.
Most importantly, I saw who my friends were. Being in New York, there are millions and millions of people here. I like to talk to people, make friends, and hang out. I have friends who took me to a resort while waiting for my pathology report. We had a vacation planned and I said I couldn’t go because I had cancer. She asked, “What are you doing during the week while we’re gone?” I told her I was going to cry in bed at home. She said, “No, we’re going to go,” and she took me to the Dominican Republic. The week after, I had to go to D.C. I had two other friends who would send flowers to my parents’ house and who drove from New York to visit me. It showed me, even when I can’t be there for them the way I want to, that they’re still there for me and it was so beautiful.
What survivorship means to me
Survivorship, or thrivership as I like to say, honestly looks like finding my happy. I try to find happiness and joy in any scenario, living and loving life to the fullest, not putting any limitations on myself, taking care of my health physically, mentally, and emotionally, and protecting my energy.
I found that I don’t need to please people. I don’t need to overextend myself. I don’t need to do things that I don’t want to do or that don’t serve me. Surviving cancer taught me that. A lot of people say, “Wow. I feel like you’ve grown so much.” I just got a reality check. I got a true sense of what matters and how I want to spend my time on this earth.
What I want others to know
Even when it’s hard, it does get better. You don’t necessarily have to rely on things outside of yourself to make it better. Finding what brings you joy and calm is what’s most important, even when you’re going through the hardest or scariest time of your life.
Specifically for AYA cancer patients or young people in general, setting this deadline or checklist for yourself of when and how things need to be accomplished is hindering you from going for it. I had a set plan. I was going to go to this school, graduate, get into this company, and complete these things by this time. When it doesn’t happen, you feel defeated. You feel like you’ve lost, when in reality, it could just be a few more steps away and you just have to keep going. In the arts industry, but also in life in general, I feel like we’re all in a queue. You either decide to stay in the line and see it through, or you get out right before the thing you’ve been dreaming of is about to happen. Youth is a blessing, but we also don’t need to accomplish everything right away. If we stick to it, find our happiness, and keep fighting, then you will achieve everything you put your energy into.
How often I’m monitored
I was being monitored every other month and then every three months. Now it’s every six months. Everything’s been good so far. My doctor has been conservative with the checkups because I’m not doing it with a PET scan, which I think is the traditional way. Because of how advanced my cancer was, I didn’t have the luxury of time to do any fertility preservation, so he wants to limit my exposure to radiation as much as possible.
My dad was diagnosed with cancer after me
It was shortly after I had finished chemo. He started experiencing symptoms and then he was diagnosed almost exactly a year after I finished.
He chalked it up to him getting older. I went through all the hardship I had to go through to help him. AML in your 60s could be a death sentence. Thankfully, there has been a lot of development and research into it, so that it’s treatable now. I can’t imagine what it would have been like if he had to jump through six months of hoops like I did.
In our case, he called me and told me what was going on, asking my thoughts on it, and sharing his experience. I texted my doctor and asked, “Can I send you my dad’s charts? Because it looks scarily similar to what I had. Can he come and see you?” He was able to go the following week.
Some people say, “I would be so upset. How can you stay so positive when all this is happening back to back to back?” I took it as what I went through was not in vain because it’s literally helping my father right now get the treatment he needs and what he deserves. Now he’s still here and in remission. Being in remission and being a survivor doesn’t mean everything’s all rainbows and sunshine, but we both made it through, so for that, I’m grateful.
Symptoms: Intense itching (no rash), bruising from scratching, fever, swollen lymph node near the hip, severe fatigue, back pain, pallor Treatments: Chemotherapy (A+AVD), Neulasta
Symptoms: Severe fatigue, shortness of breath, night sweats, bloating and stomach distension after eating, abdominal pain, little to no appetite, high fever, lump in the pelvic area Treatment: Chemotherapy ...
“You Are Not Your Cancer”: Colleen’s Stage 4 Endometrial Cancer Message
Colleen discovered she had stage 4 endometrial cancer in 2022, when she was 54. Her story began with severe, unusual menstrual bleeding, which she humorously calls “crime scene periods,” and episodes of extreme weakness. Doctors told her she was just experiencing perimenopause. Her symptoms persisted until she and her husband moved to Germany, where she had a car accident. She was lucky enough to escape injury from the accident — but during her ER check-up, doctors unexpectedly found a mass in her abdomen. This twist of fate ultimately led to her diagnosis.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
After she was diagnosed, Colleen leaned heavily on credible medical resources focusing on endometrial cancer, rather than simply searching online. She underwent a multitude of treatments: a full hysterectomy, radiation, brachytherapy, and chemotherapy. She was initially declared “no evidence of disease,” but later on her doctors discovered that the cancer had spread to her leg and lung. Her voice, once her signature as a singer, was deeply affected, challenging her sense of identity and plunging her into emotional lows. But Colleen ultimately managed to shake off these challenges.
Mental health became a pivotal part of her healing. Colleen found solace in community support, friendships, and maintaining a semblance of independence. Her message is clear: “You are not your cancer.” She urges others to find their support systems, relentlessly communicate with healthcare providers, and cling to personal beliefs that provide comfort.
Watch Colleen’s video and read her story. You’ll find out more about:
How a car accident led to her life-changing diagnosis
“You are not your cancer” — Colleen’s heartening mantra
How losing her singing voice affected her identity
The emotional toll of stage 4 endometrial cancer and finding light in community
The crucial role of self-advocacy in Colleen’s health journey
Name: Colleen J.
Age at Diagnosis:
54
Diagnosis:
Endometrial Cancer
Staging:
Stage 4
Symptoms:
Very large blood clots during menstruation
Anemia
Treatments:
Chemotherapy
Radiation therapy: brachytherapy
Surgery: full hysterectomy
Immunotherapy
Thank you to Karyopharm Therapeutics 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.
… whatever you believe in, hang on to it. If it’s a religious belief, if it’s a way to lead your life, hang on to those things.
About Me
Hi, my name is Colleen.
I was diagnosed with endometrial cancer in 2022, when I was 54.
When I First Noticed That Something was Wrong
The first time that I wasn’t feeling right, I was living on the island of Guam. It was before COVID, probably in 2019. I was at a volunteering event for the United Service Organizations.
I had to tell the woman that I was working with that I needed to leave, which was very unusual for me, but I was just feeling very unwell. I couldn’t catch my breath and felt very weak. I thought this probably was the onset of a big anemic episode, because then, when I got home, I had what I like to call a “crime scene period” — a menstrual period with very large blood clots.
I couldn’t find a doctor who would take my insurance in Guam. I went back to the States to visit my husband and saw a doctor there. And that doctor said, “Oh, you know, it’s probably just perimenopause. You’re at that age where this can start coming on, so I wouldn’t take it too seriously.”
Then we moved to Germany, and one of the first times I was driving in Germany, I got in a car accident.
They took me to the emergency room. I was totally fine after the accident. No issues. I walked away from it.
But the ER doctor came and said, “You know, we found something unusual in your abdominal area, so we’d like you to refer to our OB-GYN? Are you interested in doing that?” And I said, “Sure.”
Before the accident, I had actually been experiencing more “crime scene” menstrual periods, and they even seemed to be getting worse.
My Symptoms Had Progressed Even Before the Car Accident
Before the accident, I had actually been experiencing more “crime scene” menstrual periods, and they even seemed to be getting worse.
In hindsight, looking back, I was actually having a hemorrhage. I was going through multiple pads in 20 minutes. I would be doubling up on tampons and going through them in 20 minutes or half an hour, which would be described as hemorrhaging if it were any other type of issue. Something that you would need to go to the emergency room for.
But because this one doctor had told me, “Oh, you know, you’re perimenopausal, this just is par for the course,” I thought, “I guess this is normal,” even though it didn’t seem very normal.
The Tests the Doctor Did
He did an ultrasound in his office and went, “Oh, yeah, I’m going to keep you in the hospital.” So, this is still from the hospital stay from the car accident. “We’re going to do a DNC so that I can get enough tissue to send for a biopsy.” Because that’s the other thing with endometrial cancer. If they don’t get it in the right part of your uterus, then you can also have a misdiagnosis, because they’re not getting enough tissue, or they didn’t go to the right area.
Luckily, he was an oncologist before. He got his OB-GYN certification. So he knew a little something about what was going on.
The Moment Everything Changed
I don’t know when I heard the word ‘cancer.’ Well, nobody ever wants to hear that word, but my OB-GYN was really a positive person.
He went, “Listen, we’re going to schedule you for a full hysterectomy. We’re going to take a look around at the other organs in the area, see what’s going on. But if this is in the early stage, this could have a really good outcome for you. So, no need to worry right now about it. Even though I’m telling you ‘cancer,’ and nobody likes to hear that, let’s take each thing as it comes. Instead of trying to see into the future.”
I took it to heart. Generally, I felt okay; I wasn’t hurting and didn’t have a lot of pain at the time.
I actually knew nothing about stage 4 endometrial cancer, let alone endometrial cancer. The education was from what my doctors were giving me here and from going to reputable cancer sites. So, not just using Doctor Google and picking the first article that came up, but from the Cleveland Clinic, Mayo Clinic, MD Anderson, and other leading cancer centers in the US.
I was trying to back up what I needed to do and what the typical treatment would look like.
The Cancer Spread
After that point, I had my treatment.
I did radiation for 28 days. I did brachytherapy, which is an internal radiation in the vagina. Three sessions of that. That’s all standard. I didn’t start with chemotherapy, so they did my hysterectomy in April 2022. I didn’t start my chemo until October, and so then my chemo finished up in around March of 2023. Well, maybe a little earlier than that.
At that point, they considered me “no evidence of disease.”
Nine months afterward, though, right before Christmas 2023, we found out that the cancer had spread to my leg. My leg broke while I was putting on my pants.
Oh, that was a big emotional time. I mean, anytime you hear about bone metastasis, it’s not good news. Cancer is practically impossible to get out of the bone. It’s very hard to treat. Pretty much all you can do is slow it down.
… anytime you hear about bone metastasis, it’s not good news. Cancer is practically impossible to get out of the bone.
How My Care Team Shifted When My Cancer Spread
As my disease was progressing, the doctor said, “Okay, it’s time to move on. We have some other teaching hospitals in the area.”
So he moved me over to get most of my care through those hospitals and through my infusion clinic that I go to now. So he knew when it was time to release me as well. I felt like he was watching out for me and was trying to offer me the best choices that were available.
When I broke my leg, I wasn’t under his care. I was under the care of the orthopedist at the same hospital where he worked. Although he always asked that when I come to that hospital that I stay in his ward. Because he knows my whole history, he can keep an eye out for me.
Breaking my leg was pretty traumatic. I’m kind of a get-up-and-go type of person. I don’t want to be limited in what I can do. I was fighting with everything to get back to driving, get back to being more independent.
I really liked my care team in the bigger facilities, like my radiological oncologist, and I liked that I actually ended up having to see a pulmonologist, because they discovered while I was healing from the femur break that I also had metastasis in my lung.
It was freaky. You can see the damage to my vocal cords. They were extremely swollen from having tubes stuck down so many times during the surgery for my leg. I had a failed bronchoscopy, a successful bronchoscopy, and then the surgery. The pulmonologist at the bigger hospital was really trying to take care of it, but he said, “The damage was done even before I got a chance to get the tubes down your throat.”
I took a good six months, maybe even a little longer, to get any type of singing sound out of my voice, and to have my voice not sound scratchy when I was speaking.
I’ve been known for having a beautiful singing voice. It’s been such a big part of my identity since I was tiny. I started singing when I was three.
My voice is such a big part of my identity that when cancer affected it, it sent me spiraling into a depression of sorts.
Where I’m At in My Diagnosis
I had an episode during which I coughed up blood. What with that and my metastases, they said, “Let’s try something other than chemo.” They put me on immunotherapy for about six months.
That was miserable, pretty much because I was eating that soft food diet, kind of the same diet as when I was having the radiation therapy in my abdomen. But I would get sores in my mouth, and I couldn’t eat anything. I went from being 200 pounds down to 126 pounds. Then that stopped working because I had another episode.
They decided, “Okay, let’s go back with the traditional chemo, but we’re going to see you every week. It’ll be a lower dose.” That’s what I just finished in July. And then I had a few spot radiation treatments on my leg where it had broken on my knee and on my hip.
And then they found another potential area of concern in my hip. So they did a biopsy of that. It had to be sent to the Molecular Tumor Board.
I haven’t heard back about what molecular markers might be available for other treatments for me.
I had an episode during which I coughed up blood. What with that and my metastases, they said, “Let’s try something other than chemo.” They put me on immunotherapy for about six months.
My Knowledge of Clinical Trials
The doctors haven’t referred to clinical trials. The area that I am in is so rural that I don’t think there are a lot of clinical trials that happen here. And they have used the term ‘palliative care,’ which freaked me out the first time. Because I have stage 4 endometrial cancer, they’re considering everything that they’re doing.
I’ve been on palliative care for a year and a half. They consider it an extra level of care for patients who might need some help doing things.
My infusion doctor said, “We have these teams of doctors and nurses that will come into your house and help you. So, we would call that home health care. Except for your getting a doctor and a nurse coming in.” So he set me up with them.
He added, “The great thing about them is that they can help you manage your pain a lot better than I can.”
How I’m Managing my Mental Health
Unknowns are hard. I like to be in control. So that’s what my stage 4 endometrial cancer experience has been about. Sometimes you just have to release it. Release it and keep pressing. Like with the pain. Keep telling your doctors over and over about it.
It’s also been important to stay connected with my friends and stay involved in the community.
I should also add that maintaining my independence is also really important. Continuing to be able to get myself around if I want to go for a drive, although I’m doing that less and less, because my right leg is the one that has the cancer. So, it’s not great for driving sometimes. I just stay home if I need to stay home.
It’s also been important to stay connected with my friends and stay involved in the community.
What I Want Others to Know
You are not your cancer. You can do what you want to do with it.
Although stage 4 endometrial cancer does have something of my identity. It’s a new identity that I have besides being a singer, a wife, and a singing teacher who is now raising awareness about cancer.
It’s really easy to go inward and reduce your social circle. But I would urge people to find your compatriots, like through some of the groups on Facebook. There are a lot of really great groups on Facebook for a lot of different types of cancer.
It’s interesting how some friends react. Some will become more distant, but others will set up your meal trains and sign up geniuses for you.
I think the biggest thing for me has been a chance to reflect on cancer, and whatever you believe in, hang on to it. If it’s a religious belief, if it’s a way to lead your life, hang on to those things.
Just keep looking up, whatever your diagnosis is.
You are not your cancer. You can do what you want to do with it.
Special thanks again to Karyopharm Therapeutics for its support of our independent patient education content. The Patient Story retains full editorial control.
Allison’s Example of Self-Advocacy Living with Stage 4 ALK+ Lung Cancer
Allison describes herself as outgoing, energetic, and always on the move, so when back pain began interrupting her workouts and daily activities in late 2022, cancer wasn’t even on her radar, let along stage 4 lung cancer (ALK positive). She pushed through months of pain, assuming it was a muscular issue, until one night in May 2023, when her husband had to carry her to the bathroom. That moment shifted everything.
After urgent care scans revealed spinal lesions, Allison’s medical background helped her piece together what was happening before doctors even confirmed it. Within weeks, she learned she had stage 4 ALK+ lung cancer, a diagnosis that felt surreal for someone who never smoked, lived a healthy lifestyle, and was deeply engaged in her family and community. The shock was intense, but Allison quickly realized that information, self-advocacy, and support would be key to moving forward.
Once biomarker testing identified her ALK mutation, she started an oral targeted therapy. The results were dramatic. Within a week, Allison’s pain diminished, and she was able to sleep comfortably again. However, treatment wasn’t without hurdles. She dealt with side effects like a severe rash, high cholesterol, neuropathy, and swelling, but she leaned on her medical team, expert consultations, and peer support groups to find ways to manage. Alongside medication, she underwent radiation to stabilize her femur and strengthen her bones against further damage.
Throughout her experience, Allison has emphasized the importance of self-advocacy. She highlights the importance of asking questions, seeking second opinions, and bringing ideas to doctors, especially since rare mutations like ALK require specialized expertise. She continues to work closely with her local care team and renowned experts to explore treatment strategies, including potential clinical trials and even surgical removal of her primary tumor.
Living with stage 4 ALK-positive lung cancer has changed Allison’s perspective. She now plans life in 90-day increments between scans, while still looking ahead to milestones with her kids and future adventures. Although the unknowns remain challenging, Allison focuses on hope, community, and joy. She encourages others to face the light, believe in progress, and remember that anyone with lungs can get lung cancer. Her message is one of resilience, empowerment, and choosing to live fully while navigating life with cancer.
Watch Allison’s video to find out more about her story:
How back pain turned out to be a sign of stage 4 ALK-positive lung cancer
Why never smoking didn’t protect Allison from a lung cancer diagnosis
The targeted therapy that brought her relief within just one week
How self-advocacy shaped her care and treatment decisions
The hope and positivity that guide her every step forward
Biomarkers and Targeted Therapy: How Lung Cancer is Treated Today
Name: Allison Z.
Age of Diagnosis:
45
Diagnosis:
Non-Small Cell Lung Cancer (NSCLC)
Staging:
Stage 4
Mutation:
ALK
Symptom:
Severe back pain
Treatments:
Targeted therapy: ALK inhibitors
Radiation therapy
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.
How Faith Sustains Maria Through Incurable Stage 4 Stomach Cancer
Maria’s life changed dramatically in 2021 when what she thought was a simple stomach issue turned out to be stage 4 stomach cancer. She was an energetic, vibrant former model and devoted mom, busy moving during the pandemic. Her initial symptom seemed minor, but rapid, unexplained weight loss, fatigue, and vomiting pushed her to seek urgent care. An emergency endoscopy revealed something far more serious.
From that shocking diagnosis onward, Maria faced the disease on multiple fronts — physically, mentally, emotionally, and spiritually. She leaned deeply on her faith, her church community, and her close-knit family. Prayer became a daily anchor, not just for comfort but as a source of strength and hope. She joined her church’s prayer team, finding meaning in supporting others even as she navigated her illness.
Physically, Maria stayed active even on her weakest days. She walked on a treadmill, sang, and did small acts that made her feel good because they reminded her she was still living. She embraced a healthier diet, adapted her routines, and refused to let cancer completely define her daily life.
Medically, Maria’s path was complex. After initial chemotherapy, she underwent laparoscopic surgery at Memorial Sloan Kettering, which removed the tumors blocking her digestion while preserving her stomach. For a time, things looked promising. But multiple recurrences brought more chemotherapy, changes in treatment, and targeted radiation. She sought second opinions at top cancer centers, navigated genetic testing, and made thoughtful decisions about her care, always emphasizing self-advocacy.
Spiritually, Maria experienced a transformation. Before her diagnosis, she wasn’t a particularly spiritual person, but cancer shifted her perspective. She says faith not only changed her outlook but also helped her body heal. She credits her medical team, prayer, and staying active for getting her to where she is now: living without current signs of active cancer, with only a small area of uncertainty that doctors are monitoring closely.
Maria is honest about the ongoing challenges, like fatigue, physical limitations, and the ever-present fear of recurrence. However, she emphasizes the importance of hope, gratitude, and the power of community. Her advice is to stay engaged in life, ask questions, and take an active role in your care. “Hope is what keeps us going,” she says, and her story proves it.
Watch Maria’s video to know more about her story:
Maria thought it was just an upset stomach until the endoscopy changed everything
Why staying active even on her weakest days became her lifeline
How faith transformed her cancer experience in ways she never imagined
The self-advocacy lessons Maria wants every patient to know
How prayer and worship gave her hope despite incurable stomach cancer
Name:
Maria C.
Age at Diagnosis:
50
Diagnosis:
Stomach Cancer
Staging:
Stage 4
Symptoms:
Rapid weight loss
Fatigue
Inability to hold food down
Treatments:
Chemotherapy
Surgery: robotic distal gastrectomy
Radiation therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptoms: Feeling like something was in her throat, occasional nausea, acid reflux, occasional feeling of having boiling water in her stomach, soreness in the bottom of her ribcage
Symptoms: Persistent bloating, feeling of discomfort in the stomach area, weight loss, dehydration, feeling very full leading to vomiting, high blood pressure
Treatments: Chemotherapy (HIPEC, including through a clinical trial), surgeries (gastrectomy, splenectomy, cholecystectomy, oophorectomy, appendectomy, omentectomy, peritonectomy, lymphadenectomy), immunotherapy ...
How Flu-Like Symptoms Led to Megan’s Stage 4 Melanoma Diagnosis
Megan’s road to stage 4 melanoma began in 2018, when she spotted a new mole near her neck and face. A dermatologist confirmed it was melanoma, stage 1A. She had two surgeries: first to remove the mole and any lingering cancer cells, and another for reconstructive purposes. With no follow-up treatment recommended, she kept up with regular skin checks and assumed the risk of recurrence was low.
Years later, flu-like symptoms over the holidays turned into severe chest pain. An X-ray revealed a collapsed lung. After tests, doctors confirmed the melanoma had returned — this time as stage 4 melanoma in her lung. Megan was shocked, especially since her lymph nodes were clear. But she quickly found a supportive care team and even sought a second opinion at Moffitt Cancer Center to ensure she was on the right track.
Megan’s first treatment was immunotherapy, which didn’t stop the tumor’s rapid growth. At one point, the tumor reached 26 cm, causing extreme pain and breathing problems. Because she was BRAF positive, Megan started targeted therapy pills. One drug didn’t work well, but another produced almost instant relief and significantly shrank the tumor. This allowed for surgery in January 2024, followed by radiation for two small recurrences. (Editor’s Note: According to the Johns Hopkins Medicine website, BRAF is a gene found on chromosome seven that encodes a protein also called BRAF. A BRAF mutation is a spontaneous change in the BRAF gene that makes it work incorrectly, but not all mutations in BRAF cause cancer.)
Life with stage 4 melanoma has changed Megan’s perspective on health, priorities, and community. Side effects from long-term treatment include fatigue, occasional body aches, and digestive issues, but she’s learned to manage them. She’s also navigated deeply personal losses, like the likelihood of not having children, something never discussed with her doctors early on.
Megan now focuses on nourishing food, meaningful connections, and work that energizes her. She’s active in melanoma support groups, sharing her experience to help others feel less alone. She emphasizes the importance of early detection, advocating for skin checks, sun safety, and rejecting harmful beauty standards leading to risky procedures like tanning.
Megan’s story is one of resilience as she chooses to live fully, connect deeply, and help others navigate the complicated emotional and physical realities of survivorship. Her authenticity, advocacy, and openness make her a voice of hope for anyone touched by cancer.
Watch Megan’s video to find out more about her story:
How a single mole changed Megan’s life forever
The shocking way her melanoma returned years later
Why one pill changed everything
The part of cancer care no one told her about
Megan’s heartfelt advice on health and self-acceptance
Name: Megan S.
Age at Diagnosis:
28
Diagnosis:
Melanoma
Staging:
Stage 1A (2018); Stage 4 (2023)
Symptoms:
New mole
Cough
Wheezing
Chest pain
Back pain
Treatments:
Surgeries: mole excision, reconstructive surgery, thoracic surgery
Immunotherapy
Targeted therapy: BRAF inhibitors, MEK inhibitors
Radiation therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptoms: Severe pain on the side pain that worsened over time, pelvic pain and a feeling of pressure resembling labor, swollen lymph node on the cheek Treatments: Multiple surgeries to remove tumors, targeted therapy (Opdualag/nivolumab and relatlimab-rmbw) ...
Living with Metastatic Lung Cancer: Clara’s Honest Take on Life and Treatment
Clara’s story is one of change, resilience, and real talk about life with metastatic lung cancer. Diagnosed at just 30, Clara was an avid runner, living independently, and working full-time as a graphic designer. Throughout most of 2024, she chalked up her growing discomfort and hip pain to running-related injuries. After an MRI revealed a herniated disc, it seemed like a clear explanation for her pain, but it turned out that the discomfort was also linked to metastatic lung cancer that had already spread to her bones and joints.
What made things especially confusing was that Clara didn’t experience the classic symptoms of lung cancer. There was no coughing or shortness of breath; none of the usual warning signs associated with it. Instead, she felt dizzy, lightheaded, lost weight, and had swollen lymph nodes, neuropathy, and unexplained headaches.
For months, Clara pushed through it all, thinking it might be a blood disorder or an autoimmune disease. The breast lump she noticed in October raised red flags, but she set it aside until things escalated. Eventually, she landed in the emergency room after throwing up nonstop. That’s when doctors found the metastases.
When Clara was diagnosed with stage 4 lung cancer, she was stunned. Her cancer had spread not just to her bones, but to her liver and brain. It felt surreal, like it was happening to someone else. Once she returned to Iowa for treatment, things moved fast.
Clara started brain radiation immediately and underwent genetic testing that revealed the MSH6 mutation, something she had never heard of before. This biomarker guided her treatment plan: a combination of two chemotherapies and immunotherapy. She is still on immunotherapy now and will be for life.
Becoming disabled has been one of the most difficult parts of this experience. Clara went from running half marathons to relying on a walker or a cane. Losing that level of independence hurts, but she’s working through it with honesty and strength. She also stresses the importance of self-advocacy, listening to your body, asking questions, and making your needs known, whether in the doctor’s office or around loved ones.
Now, Clara’s mission is to advocate and educate others through her TikTok and beyond. From breaking down scary medical procedures like brain radiation to showing how a chemo port works, she’s demystifying the parts of cancer that are often misunderstood or feared. She’s open about the emotions, the identity shift, and the practical realities of living with metastatic lung cancer, while reminding others that life doesn’t stop — it just changes, and that’s okay.
Watch Clara’s video to find out more about her story:
How a running injury masked the signs of metastatic lung cancer
Why Clara didn’t have any typical lung cancer symptoms and what she felt instead
What it’s like to become disabled after a stage 4 cancer diagnosis
How Clara uses creativity and TikTok to educate and advocate for others with cancer
What surprised her most about brain radiation and why it’s not as scary as it sounds
Name: Clara C.
Age at Diagnosis:
30
Diagnosis:
Lung Cancer
Mutation:
MSH6
Staging:
Stage 4
Symptoms:
Pelvic pain
Joint and bone pain
Breast lump
Extreme lightheadedness and dizziness
Vomiting
Fainting spells
Swollen lymph node in the neck
Neuropathy
Headaches
Unexplained weight loss
Severe anemia
Treatments:
Radiation therapy to the brain
Chemotherapy
Immunotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptoms: Persistent cough (months), coughing up a little blood, high fever, night sweats Treatments: Chemotherapy (4 cycles), maintenance chemotherapy (4 cycles) ...
Will’s Experience with Stage 4 Liver Cancer is Marked by Moments of Joy
Will found out that he had stage 4 liver cancer in December 2022. Before that, his life felt like a blur. He struggled with unexplained exhaustion, frequent diarrhea, sporadic vomiting (especially after eating pork or rich food), and a sense of discomfort he couldn’t put his finger on.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
One day, in the middle of a badminton game, Will felt an unusual hardness in his abdomen. This led him to seek medical advice. He ended up going to a hospital, where doctors ran tests and procedures and eventually uncovered a massive tumor that took up nearly 70% of his liver.
The ER doctor compassionately delivered the grim news that Will had liver cancer, and this thoughtfulness and consideration helped him find his footing despite the overwhelming odds. He also found solace in actionable steps. He initially underwent immunotherapy and targeted therapy. These treatments weren’t successful, but he and his medical team didn’t stop there. Clinical trials offered Will hope and insight into medical advancements. These trials were grueling, but they supported his resilience and determination to get better.
Stage 4 liver cancer introduced a new rhythm to Will’s life. He learned to accept his situation, which became his basis for adaptation and also formed a surprising foundation for moments of joy. He found that physical activity helped him feel free and helped him reclaim his autonomy. Despite Will’s physical limitations, sports, including swimming and cycling, became a refuge and source of comfort. His ambitions grew bolder: he aimed to complete a triathlon. Every move he made, further emboldened his defiance against any thoughts of despair and helped him enjoy life’s simple freedoms.
Will’s tumor shrank significantly, and his health stabilized remarkably, thanks to treatment, which was made available through applying for compassionate-use medication or using a new treatment not yet approved even if you are not taking part in the clinical trial. Uncertainties linger regarding his stage 4 liver cancer, but he remains laser-focused on living fully. He urges fellow patients to be proactive regarding their health management and to ask questions, prepare for medical appointments, and embrace discomfort as part of the process. He’s found that happiness isn’t dependent upon one’s health status; one can enjoy meaningful moments even during times of adversity.
Watch Will’s video to find out more about:
How badminton led him to uncover a stage 4 liver cancer growing right under the surface of his abdomen
The unexpected role that swimming and cycling played in his health transformation
Why a dead phone during Will’s diagnosis became an oddly pivotal moment
How he found happiness amid treatment for advanced cancer
The power of asking the right questions during medical appointments and pushing for compassionate use medication
Name:
Will M.
Age at Diagnosis:
29
Diagnosis:
Liver Cancer
Staging:
Stage 4
Symptoms:
General uneasiness
Exhaustion
Diarrhea
Hard mass in the abdomen
Worsening abdominal pain in the upper right quadrant
Treatments:
Surgery: kyphoplasty
Chemotherapy
Targeted therapy
Transarterial chemoembolization (TACE)
Radiation therapy
Clinical trial
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Devon found out she had stage 4 rectal cancer in March 2023, when she was only 30 years old. She started to experience her first symptoms a month before that: frequent bathroom visits (up to 20 times a day), discomfort that became pain, and, in some instances, passing mucus instead of stool. She initially thought she had irritable bowel syndrome, but her gut feeling (literally and figuratively) convinced her to look for medical advice.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Devon took a proactive approach to her diagnosis. This included closely tracking her symptoms and how they progressed, as well as persistently communicating with doctors. Thanks to her approach, she was able to land a quick appointment with a gastroenterologist. Within just 20 minutes of meeting her and conducting an exam, the doctor detected something amiss and recommended that she undergo a colonoscopy immediately. The diagnosis? Stage 4 rectal cancer.
Devon was shaken by her diagnosis. Because she had neither a family history of rectal cancer nor any of the typical risk factors, it felt surreal. However, she didn’t fixate on asking, “Why me?” Instead, she asked, “What’s next?”
Devon’s doctors conducted a flurry of tests and scans and referred her to other doctors, but she ended up returning to Seattle for comprehensive care. However, her symptoms worsened while she was making her way back, resulting in an emergency ostomy surgery in San Francisco. It was a painful procedure, but she felt better afterwards.
After surgery, Devon’s stage 4 rectal cancer treatment plan included six weeks of daily pelvic radiation, low-dose chemo pills, and four months of traditional chemotherapy. Although she initially responded well to these treatments to the point of being declared no evidence of disease, the cancer returned. She then started a more intense second round of chemotherapy. But Devon has refused to buckle despite this setback and has managed this new phase of her treatment with courage and support from her loved ones.
Devon and her doctors now rigorously and closely monitor her health. She offers simple but powerful pieces of advice to others: listen to your body and find your community. Because the adolescent and young adult cancer community played such a crucial role in her emotional recovery as a young adult who faced cancer, thanks to offering understanding and solidarity that’s hard to find elsewhere, she recommends that other patients find their people, too.
Watch Devon’s video and:
Learn how the “small” but ominous symptoms she struggled with led to a big discovery
See what it’s like to face stage 4 rectal cancer, which is usually associated with older people, at just 30
Rethink what you think you know about rectal cancer — Devon has neither family history nor risk factors for it
Find out how she navigates life with rectal cancer: from symptoms to survival
Name:
Devon B.
Age at Diagnosis:
30
Diagnosis:
Rectal Cancer
Staging:
Stage 4
Symptoms:
Pain when trying to move bowels
Increased frequency of bowel movements, alternating with periods of constipation
Passing mucus instead of feces
Narrow stools
Treatments:
Surgery: ostomy surgery
Radiation therapy
Chemotherapy
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.
Cassandra Balances Motherhood, Life, and Stage 4 Adrenal Cancer (Adrenocortical Carcinoma)
Cassandra’s life took a strange and unwelcome turn in October 2021 when she was diagnosed with stage 4 adrenal cancer. She was pregnant at the time, and her diagnosis was uncovered through blood tests she took to determine her baby’s gender. The test results were confusing, and they opened the door to many medical appointments. Ultimately, Cassandra found that she had a tumor the size of a softball on her adrenal gland.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Cassandra’s diagnosis stunned her, but it also allowed her resilience to come to the fore. As she deals with the complexities of adrenal cancer (a rare cancer that’s also known as adrenocortical carcinoma), she remains focused on her family, especially her young son, Paxton. Cassandra and her husband work tirelessly to ensure that Paxton’s days are full of love, laughter, and routine. She shares that when they talk to him about her illness, they frame it simply as “Mom not feeling well.” This keeps him innocent while Cassandra works to manage the physical and emotional effects of her condition.
Cassandra’s story isn’t about her health alone. It’s also about self-advocacy and the importance of trusting one’s instincts. She’s worked with multiple oncologists, each of whom has offered different perspectives and approaches to her treatment plan. She’s unafraid to seek second opinions and emphasizes what she’s done to form a medical team that shares her values and understands stage 4 adrenal cancer. Because of this empowered approach, she has been able to receive care tailored to her unique situation.
Mental health plays a key role in Cassandra’s experience. She embraces her vulnerability and lets herself feel raw emotions, often during the quiet baths she enjoys as a safe space to process her feelings. However, she balances these moments with positivity, knowing how much she influences those around her. Cassandra maintains her sense of humor and can laugh at herself, even during tougher days. For example, when she lost her hair after chemotherapy, she recounts how she embraced her baldness by joking about it with friends and family.
Cassandra doesn’t let cancer put her life on pause. In the midst of one of her treatments, she married her sweetheart in a heartfelt ceremony and celebrated with close family and friends. Cassandra continues to live fully in the face of stage 4 adrenal cancer, attending concerts, going on trips, and cherishing every moment with her family. But her advocacy goes beyond her situation. She encourages others who’ve been diagnosed to trust their support systems, look for second opinions, and make mental health a top priority.
Watch Cassandra’s video to find out more about:
How a routine blood test during pregnancy led to an unexpected stage 4 adrenal cancer diagnosis
Cassandra’s candid take on balancing motherhood with cancer
The pivotal role of self-advocacy in cancer treatment
Cassandra’s inspiring experience, from diagnosis to wedding vows
Her belief that cancer may alter life’s course, but it doesn’t define it
Name:
Cassandra R.
Age at Diagnosis:
28
Diagnosis:
Adrenal Cancer (Adrenocortical Carcinoma)
Staging:
Stage 4
Symptoms:
None; inconclusive bloodwork during a blood test to determine her baby’s gender
Treatments:
Surgery: adrenalectomy
Radiation therapy
Chemotherapy
Immunotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptom: Mild back pain on her left side that escalated in severity Treatments: Chemotherapy (etoposide, doxorubicin, and cisplatin), mitotane, surgery, lenvatinib ...
