Author: Katrina Villareal

How Stage 4 Hodgkin Lymphoma Changed Amina’s 20s, But Not Her Spirit

Post author By Katrina Villareal
Post date September 8, 2025
No Comments on How Stage 4 Hodgkin Lymphoma Changed Amina’s 20s, But Not Her Spirit

September 8, 2025

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.

Interviewed by: Carly Knowlton
Edited by: Katrina Villareal

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.

Table of Contents

Hi, I’m Amina
When something first felt off
There was a big delay in my diagnosis
How I found my care team
When I heard the words “you have cancer”
What my treatment plan looked like
Managing the side effects of chemotherapy
How I navigated having cancer so young
My support system helped get me through the hard days
What survivorship means to me
What I want others to know
How often I’m monitored
My dad was diagnosed with cancer after me

Hi, I’m Amina

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’m a 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.

Thank you for sharing your story, Amina!

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Cheyenne’s Stage 3B Melanoma Taught Her the Power of Self-Advocacy

Post author By Katrina Villareal
Post date September 5, 2025
No Comments on Cheyenne’s Stage 3B Melanoma Taught Her the Power of Self-Advocacy

September 5, 2025

Cheyenne’s Stage 3B Melanoma Taught Her the Power of Self-Advocacy

When Cheyenne was diagnosed with stage 3B melanoma in December 2024, everything in her life shifted. At first, doctors thought it was stage 2, but after surgery in January, the diagnosis became clearer. As a photographer and storyteller, she’s spent decades documenting the world around her, but suddenly she had to turn that lens inward and focus on her own health.

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Her first warning sign was a mole on her back that itched. Even though her gut told her something was wrong, the first doctor told her it was cosmetic. Thankfully, a physician assistant took her concerns seriously and ordered a biopsy. That persistence saved her life. From that moment on, Cheyenne learned the importance of advocating for oneself and trusting one’s intuition. She emphasizes that when something doesn’t feel right, asking questions is essential.

After surgery revealed cancer in her lymph nodes, she was officially diagnosed with stage 3B melanoma. She describes the wide local excision as far more invasive than she expected. Recovery was rough, but she leaned on her husband, friends, and a strong medical team. Even though she feared asking for a second opinion, she eventually welcomed it and found reassurance knowing she had access to comprehensive care.

Immunotherapy became her next step, but it hasn’t been easy. Side effects like colitis, thyroid problems, and adrenal issues forced her to pause treatment. Despite setbacks, she has shifted her focus toward what she can control, by supporting her body with meditation, yoga, organic foods, and daily juicing. Instead of filling every day with endless work and projects, she’s learning how to slow down, listen to her body, and celebrate small victories.

Cheyenne also reflects on the emotional side of stage 3B melanoma. Losing her beloved dog BamBam, who went through treatment at the same time as her, deepened her understanding of presence and grief. She’s found comfort in rituals, from nightly tea to morning breath work, and discovered the power of community, whether through friends dropping off books or her husband sitting by her side at tough appointments.

Above all, Cheyenne stresses the importance of education. She believes that knowledge is power, and being informed about treatment options, staging, and side effects helps patients make decisions with confidence. Sharing her story makes her feel seen, and she hopes it encourages others to speak up, ask for help, and feel safe in their vulnerability.

Watch Cheyenne’s video or read her interview transcript to find out more about her story:

She learned the hard way why trusting your gut is non-negotiable
What her dog’s cancer taught her about slowing down and living fully
The unexpected ways diet and meditation became her lifeline
How she found her voice and learned to ask for a second opinion

Name: Cheyenne E.
Age at Diagnosis:
- 45
Diagnosis:
- Melanoma
Staging:
- Stage 3B
Symptom:
- Itchy mole on her back that changed in appearance
Treatments:
- Surgeries: Wide local excision, sentinel lymph node biopsy, lymph node removal
- 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.

Table of Contents

My name is Cheyenne
The first red flag – my initial melanoma symptom: an itchy mole
The moment everything changed
How I found my care team
How surgery went
The cancer spread
What the mole looked like
My reason behind getting a second opinion
Treatment side effects forced a break
How my life has shifted
Navigating my diagnosis with my partner
What I want people to know
How I’ve supported my body

My name is Cheyenne

I got diagnosed with stage 3B melanoma in December 2024. I was first diagnosed with stage 2 and then post-op in January, we discovered I was stage 3. I’m from Malibu, California, but currently reside in Santa Cruz.

I’m a photographer, traveler, and a lover of dogs, kids, and all things. I work in the commercial advertising space. I photograph a lot of women’s health, women’s fashion, kids, sports, recreation, and travel. I’ve been doing that for about 25 years.

I’m married to a very handsome man who is an avid surfer and a geologist. We love living in Northern California. We’re very outdoorsy people. We live in a little town just above the ocean. It’s super beautiful, and it’s been a great place for me to work on this healing journey, for sure. I left LA about five years ago. I was there my whole life. I got my diagnosis when the fires were happening.

I’m not working at the moment. I’m taking a little break to focus on treatment and doctor’s appointments, but I still go outside for little walks, hikes, and days at the beach.

My parents grew up in the film industry. They were both stunt people. I grew up in a family of stunt people, including my mom, dad, aunts, uncles, cousins, and my sister’s husband. I grew up in that industry and loved image-making. I got into stunts as well in my 20s. I did that for a while and then realized the longevity was not there for your body, so I turned to the other side of the camera.

I picked up a camera and fell in love with it. I could tell stories, travel, and make a job out of it. I studied under a photographer in New York and then started my career. I feel lucky that I had creative parents who encouraged that process and it took flight. I signed with my first agent at 28 and went down the path of shooting lifestyle. I never got heavy into fashion. That parlayed into doing a lot of campaigns with kids and athletes. It’s been an incredible career and I plan to keep going for a while.

I talk to my best friend every day, so I hope I do her justice. She would describe me as a planner, a very hard worker, sensitive, and a good friend. I work hard. I probably work too hard sometimes, but I love my job, so it’s a combination of always having creative ideas that I want to get out of my head and loving to be busy. I’m learning to slow down, so not filling every moment with something to do is my true challenge right now. I definitely get described by most people as a very hard worker, very sensitive, and someone who loves to organize and plan things.

I realize it’s become a coping mechanism for me. I’ve had a lot of loss in my life. I’ve lost my parents at a young age, a couple of friends, and a couple of ex-boyfriends. We lost our dog to cancer last month, which was the hardest thing in the world. Learning to slow down has been a gift. He got diagnosed two to three months after me. We went through treatment together for months. I would go to his and then go to mine.

I don’t often have pictures of myself. It took me a while to dig deep and find some. I have a million pictures of everybody in my life and all the things I do, just not of me. There’s a photo of my dog and my arms after treatment one day, and there’s a tattoo on my arm that says, “Love you, Daddy-O.” It was the last note my dad left me before he passed away, and I got it tattooed on my arm.

I ended up naming my dog BamBam, which was my dad’s nickname. There was a day when I was lying on the ground with BamBam, my arm was wrapped from an infusion and his arm was wrapped from an infusion, and my tattoo was in the picture.

The first red flag – my initial melanoma symptom: an itchy mole

I noticed a mole on my back, which had been there for some time. I’ve learned now that moles on the back are very hard to watch because you can’t see them, but it was something that I was concerned about. I asked my general practitioner about it, not long before we ended up getting it biopsied. Unfortunately, the first doctor I shared it with told me that she thought it was cosmetic. I pushed and said, “Are you sure?” I let her know that it itched and found out later on that it was a telltale sign. I’ve learned that when in doubt, biopsy. I didn’t know enough at the time.

About two months later, I came down with pneumonia in December 2024, so I went in for a chest X-ray. The physician’s assistant asked me about the mole and he said, “Have you had this checked out?” I said I did a couple of months ago. He asked if we had biopsied it and I said no. He said, “I can’t do it right now, but can you come back tomorrow? I’d love to shave this off.” I said absolutely because my prior doctor made me feel like it was cosmetic and it wouldn’t be covered by insurance, so thank God for him. We shaved it off.

I got a call from him two days after Christmas and he let me know the news. I truly feel that man saved my life. I ended up finding out how aggressive it was and how a few months later would have made a big difference. Everything changed on December 27th and within three days, I had a surgeon, a plastic surgeon, and dermatology. I had four or five appointments and was scheduled for wide excision surgery in two weeks. Everything got put on hold. He told me that this needed to be the most important thing to focus on and I took him very seriously. Recently, my husband also got his skin checked by him, so I got to shake his hand and thank him.

The first doctor I saw spent five minutes with me. The second physician assistant that I saw spends 20 to 30 minutes with me. He even said to me, “You can’t give good care in seven minutes,” which apparently is the average they spend with you in the room. It was a doctor I had seen for the first time, so I hoped for a bit of a longer of a visit. I was pretty upset.

I feel very in tune with my body. I trust my intuition a lot. I had a mom who erred on the side of hypochondria, so I have always erred on the opposite side and never worried about little things in medical stuff, but I truly feel when I know something’s wrong, something’s wrong. I trust my gut wholeheartedly now.

I was upset and it took me a few months, but I eventually wrote that doctor a letter and let her know my case. She wrote back a very kind letter, apologizing and thanking me for letting her know, and let me know that she would pay more attention and be more careful in the future. It felt good to get that off my chest. It felt nice and her response was nice. There were no excuses. She just apologized and I appreciate an apology that is heartfelt, so it was nice.

The moment everything changed

I will never forget it. It was a Friday and I was trying to watch a movie with my family. The phone rang and I remember thinking to myself, “Stay present. Don’t answer the phone.” Then it rang again. It was a number I didn’t know. I have a little trigger response from the losses I’ve experienced when the phone rings repeatedly. I talked myself out of answering. Then I noticed the time and day. It was a Friday at 5 o’clock, which is when doctors tend to call.

I didn’t remember the biopsy, but when it rang a third time, I decided to check the message. I paused the movie and told my husband I needed to make a phone call. Sure enough, it was the doctor. He was incredibly kind and sweet. I put him on speakerphone, so he delivered the news to my husband and me. We didn’t know any staging, but we knew that it was serious.

My brain fast-forwarded to all the things I had coming up and all the things I needed to do. “I’m leaving in 10 days for a job in Mexico. Can I go?” He said, “I don’t think so.” His exact words were, “This needs to be the most important thing for you right now.” Of course, I somehow figured out how to still do my job in Mexico, but it went from a calm two days after Christmas to we need to go home and go to the doctor every day this week. Everything changed.

I had had a basal cell carcinoma removed from my face about 10 years prior, which was treated with a little bit of chemo cream. I had learned a little bit. I knew that melanoma was the scary one, but I didn’t know how scary and serious it could be and how much it could spread.

I started a deep dive. My sister-in-law sent me a book that I immediately read. My favorite book is called Radical Remission and it was an inspiring book to read. There are a lot of scary books out there. In this book, there were a lot of positive stories and different stories, so it was a good introduction to cancer. I went down the Google rabbit hole. I wanted to educate myself, so I started listening to audiobooks and podcasts, trying to learn as much as I could.

How I found my care team

I was given a team. Friends immediately said I needed a second opinion. I felt comfortable with my team. I didn’t know any different. I’m a part of an organization in Santa Cruz that I’m happy with. It felt comprehensive and personal. It felt good, so at that time, I didn’t feel any need for a second opinion.

We’re also very close to Stanford. I felt like I was in a good teaching hospital. If and when I need to go there, I will. I have established care over there since then. I feel like I have a very good team.

How surgery went

At the time, I was T2. They explained that it was hard to tell for certain because my biopsy was done by a shave, so they didn’t know the true depth until they went in. They explained to me how the surgery would go, that they were going to do a sentinel lymph node biopsy, and remove some of my sentinel lymph nodes in my right arm. My mole was right behind my right arm.

They explained it pretty well to me and then I followed up with some research. I would say I didn’t grasp how big the excision and how intense the surgery were going to be. The year prior, I had a hysterectomy and it felt invasive. The recovery is as bad as removing an organ and I didn’t expect that. In my mind, I thought they were going to cut and dig it out. It was a good chunk. I had armpit numbness and inability to use that arm.

They ended up finding cancer in one of my lymph nodes, which they removed, and there were still some things lighting up in that area, but it was more invasive than I realized. My husband saw me post-surgery and got very lightheaded. It was more than I expected, for sure.

I heard wide excision and I knew I had a plastic surgeon and a surgeon on the case, but I didn’t realize how big a surgery it was going to be. I saw him yesterday. They had to go all the way down to my muscle and underneath my breastbone. For the lymph nodes, they were in there more so than they had hoped, so he didn’t realize that either.

The cancer spread

January 15th was a bummer. They called us to talk about it in person. We didn’t even know that the staging could go up from there at that time. They explained the depth of mine. On a scale of 1 to 4, it was a 3.5. It was about as deep as it could go. It wasn’t ulcerated, but it was the nodular type, which was the most aggressive.

Later on, when I went to Stanford, I learned of the mitotic rate. The rate at which it multiplied was 10, so I was very high risk and very advanced. They explained my treatment plan. I would start immunotherapy in March. I would do 13 rounds spaced out by about three weeks, so it was supposed to take me a year. It’s going to take me a lot longer than we had planned.

I started in March. I did about four rounds and I’ve been on pause for the last nine weeks because of side effects.

What the mole looked like

It wasn’t that big. It was dark and raised, which you would notice for sure. I have freckles everywhere and covered moles. I’m a tough case. I wasn’t staring at it because it was on my back, so it’s not like I was watching it. I have others I look at and ask about, and they are wildly different from everything else on my body for sure.

At Stanford, they have a mole mapping program. They do full-body photography at some of these hospitals. For people who have a lot of moles, they scan your entire body and simulate it next time you come in, so they can see the growth in size and keep track. How can you keep an eye on several moles? I’m grateful for that technology, for sure.

My reason behind getting a second opinion

When you first get diagnosed, everyone has a lot of ideas, opinions, and suggestions. Everybody wants you to get the best possible care. I’m in a smaller town and I wasn’t sure how great the care was here. I thought that as soon as I had a bad feeling or if I had questions or doubts, I’ll go for a second opinion.

In the beginning, I felt on track, and then my dermatologist in Santa Cruz suggested it. She said, “Your skin is hard to keep track of. You’ll be in here every three months, but it might not hurt for you to go to Stanford.” As soon as she said the words, I said, “I would love that. I’d love to go over there.”

I feared asking for a second opinion, even though I know it’s very normal. Your doctors aren’t supposed to take it offensively, but I didn’t ask outright. She referred me to their melanoma center and got me established. I’m going every six months. I’m in there so that if I need further care, I can get it from them. It feels safe. I appreciate it.

I have a dear friend who has stage 4 cancer who’s also established over there. He has been my cancer guru. He’s communicated with his doctors about my doctors. He said, “It sounds like you’re in great hands.” He’s helped me navigate some of the systems as well.

I’m still going every day. I’m not doing treatment, but that doesn’t mean I’m not doing anything. I’m currently getting steroid infusions and IV hydration for all my side effects. I feel like I go to the doctor every day, so I’m very grateful that they’re close to home. It’s only a 20-minute drive for me. Stanford’s about an hour and a half, so it’s not too bad, but I’m grateful that I’m not there as often as the cancer center in Santa Cruz.

Treatment side effects forced a break

I developed colitis from the immunotherapy right away, as well as a full-body rash, extreme fatigue, thyroid issues, adrenal issues, and pre-diabetes. I learned that I had autoimmune issues coming into this. I’ve had Hashimoto’s and thyroiditis that were underactive my whole life, so I’ve been on synthetic medication. I’ve been told that there’s a tendency for people who have autoimmune disease to develop it that once you start immunotherapy, you have a higher chance of getting other autoimmune diseases. Apparently, about 25% of people get one of these side effects from my treatment and 4% get all five. I’m in that four percent.

They all came crashing down pretty fast. It was tolerable for a moment, but the colitis got so bad that I lost a lot of weight and wasn’t able to eat or do anything. I was going to the bathroom so many times a day. We did two rounds of steroids orally, but that didn’t work. I was doing daily infusions of steroids and I was very dehydrated from that. The IV hydration has been helpful.

We’re in a holding pattern of trying to get me down to a dosage where I can resume treatment. We got a second opinion and the conversation has been about whether we can stop treatment if we need to. The general consensus is no. We’re going to try and push through, but we have to get my body to a place where I can tolerate it.

How my life has shifted

I have a great support system. I have incredible friends who have shown up and sent me messages, photos, books, and things. I have started meditating in the mornings, which has been a game-changer for me as it allows me to focus on breath-work and calming my nervous system. My nervous system is so wound up from this year and the loss of my dog, so I’m trying to be calmer so that every experience is not as jarring to my body as it has been.

My days are pretty slow. I try to do yoga every day. What I used to do before 8 a.m. is about all I can do for the entire day. Now it’s like going to yoga, the grocery store, and getting my infusion, and then going home, which is a very successful day and is hilarious. I used to do that, go to work, and do other social things. If I have an infusion and go to yoga, there’s nothing I can do after 5 p.m.

It’s been a gift. It’s been a huge learning lesson. I won’t lie, the first six months of this year, I kept working. I didn’t stop. I figured out how to work in between treatments and pretended like everything was fine. I kept operating at my highly efficient level. When they told me that I had adrenal insufficiency and borderline adrenal crisis, I finally started listening. My body’s not handling this well and is mad at me, so I need to stop.

I was proud of how much I could do. If I wore it like a badge, I was like, “Oh, I can do 100 things in a day and then come home and still do all these things.” Now I’m just like, “Why did I feel like I had to do that all the time?” So I’m slowing down, which I have truly only done in the last two months and even more so in the last couple of weeks.

It took my dog getting sick for me to realize, when they told me he had about 2 to 4 months to live, that I don’t want to miss any of those moments and that made me start turning down work and staying home. I know that was his gift to me, getting me to a place where, once he was gone, I have to do this myself and focus on this.

Navigating my diagnosis with my partner

It’s changed us a lot. He’s been incredible. I feel like he’s been there with open arms. Fortunately, he works from home, so when there are appointments that I need him to go to with me, he will take the time and come with me. He has been supportive financially. He was working part-time very comfortably and took a full-time position as soon as I decided to go on disability. He stepped up and offered to take the brunt of all the things, so I didn’t have to worry financially.

He always checks in with me after appointments and asks how they went. When it comes to going to appointments with me, I battle with that because when in the beginning, I thought I could do it by myself. Then I started to realize that some of them were hard. You don’t always know when they’re going to be hard, so I had to share that with him. He was like, “Tell me when you want me to come.” I would go to these appointments and come out of them sobbing, and he would be like, “Why didn’t you ask me to come?” I’m like, “I had no idea that was going to go that way.” That has been a lesson for us both where I pick and choose.

If I have a funny feeling, then I ask him. I felt bad about it in the beginning because he was missing a lot of work, but now I say, “This one’s important,” and that’s it. He shows up. Sometimes we get him on video if we need to or something. He’ll be there at the drop of a dime for me.

Our whole life has obviously changed in terms of travel and commitments. We had to have some big talks about what our expectations were. We try to look at some of it as short-term and some of it as long-term, like not going anywhere for the next month. For us, it was the whole year. This is the year where we stay at home and focus on this. We can do weekend getaways. We love to travel. We’re both little adrenaline junkies with sports and things, so not skiing, surfing, or doing all those things is hard for us.

But we live in a beautiful place and we’re getting to spend more time at home and with friends. The quality of our time and where we spend it are very different. We have a wedding coming up in October and almost everybody is very understanding. We say we will be there, but my schedule could change. I want to make it to my nephew’s wedding more than anything in the world and I’m sure I will, but I’m nervous because I don’t have my treatment schedule and I don’t know what’s going to happen. We have that flexibility between the two of us and allows him to do things on his own. I have a lot of girlfriends who will show up and spend time with me. If a girlfriend comes to town, I tell him to go do something.

I love to have something to look forward to. Fortunately, my husband is not a planner. He’s very go with the flow and a last-minute Larry. I joke that he’s the Zen master Buddha because he’ll just do whatever. It’s been a huge lesson for me because I don’t operate that way. Meeting somewhere in the middle is probably the healthy approach.

But the way I’ve been looking at the future has been in shorter chunks. With work, I used to look one year ahead, five years ahead, and have all these big goals and plans that I’m not doing at the moment. Now, I’m staring at my feet, trying to get one foot in front of the other. I’m readjusting my brain and learning how to take one day at a time, but still allowing myself to have little things.

We went to Tahoe this past weekend. We saw some friends and having that on the calendar for two months, I thought, “If we make it, we make it.” The day before, we almost didn’t make it because I had infusions that day and didn’t get scheduled until the day before. I thought I might feel horrible. Friends who understand have been wonderful, but we made it and I had a great time.

Now we have nothing on the calendar until the wedding in October. I still allow myself little things to look forward to, but the month of September is for me to focus. I’m probably getting a port in the next couple of weeks, so I know I have that surgery coming up. I take it day by day. I wake up and try to get to yoga.

I didn’t know how difficult I would be. They did a vein check on me, looked at me, and said, “You’re great,” even though the phlebotomist hates me. I average 3 to 5 sticks every single time. I’m covered in bruises, with the hydration and the steroids. The nurses have been telling me for months to do it and I kept thinking, “I don’t want to do another surgery.” But now that my treatments are pushed until February, I’m nowhere near done, so I might as well. I’ve asked a lot of people and they have said they were grateful. I haven’t heard anything negative about it, so I can still have my life and do all the things.

What I want people to know

What has stuck out for me is to trust your gut and your intuition. Our intuition is so spot on when you’re in tune with your body, whether you’re not feeling well or something doesn’t feel right. I’ve gotten a lot better at advocating for myself.

Knowledge is power. I know I’m not a doctor and I don’t know the specifics, but understanding your type of cancer, type of treatment, and your options is huge. We go into these appointments and get fed so much information so fast that we take it as the Holy Grail. We don’t always know what our options are. Always go in with a list of questions and write down answers to questions. Try to have a very comprehensive understanding of what’s going on.

I was told to tell my story to the doctors at Stanford, so I reiterated my case and they were like, “Wow.” Even my husband was like, “Wow, that was impressive.” They said, “You’ve done your homework.” It feels good because then I can understand when they send numbers, names, and details. Fighting for myself is something I’ve learned a lot.

How I’ve supported my body

I have radically changed my diet and focused on things at home that can help heal myself. I’m dealing with cancer, but at the same time, I feel like I’m healing my body in a way that it’s always wanted, even outside of cancer. I was trying to reduce the inflammation in my body already and this was a catalyst. Weirdly, I feel like the things I’ve been doing have been so supportive and integrative that my body’s oddly happy. I can tell my body is like, “Oh, thank you. This is the care and concern that I’ve always wanted.”

There were things I always wanted to do, but it felt so hard to make big changes in my diet. Do simple things, like getting rid of processed foods. None of us should be eating crap, but it’s so easy and accessible. I’m feeding and nourishing my body well. It has been something that has felt so good and something that I felt so proud of, that I wish we all did, regardless of cancer. Getting slapped with the C-word is a bigger incentive, but I am proud of the healthy changes I’ve made in my life, which has been the silver lining in all of this for me.

I’ve taken certain foods out of my diet. I have stopped drinking and stopped eating all processed foods. I’ve stopped eating red meat. I don’t do any cow products. I’ll do some goat and sheep, some game occasionally, because I’m pretty deficient in iron. I’ve switched to completely organic. I juice every day.

I take a lot of supplements that I’m deficient in. I’m bad at taking vitamins, so my supplements are little droppers of vitamin D, B12, iron, folate, and all those kinds of things. I put them straight in my green juice in the morning and I drink that. I’ve enjoyed juicing, as nerdy as it sounds, but it’s become meditative. It’s my thing. Every Sunday, I get all my veggies ready.

I have a garden. I don’t grow all of it, but we get vegetables from a local community supported agriculture (CSA) box and that feels great, that all my veggies are coming from close by. I try to get my food as close to home as possible. The meat and vegetables all come from local regenerative farms. I’ve decided that the money I’m saving on alcohol and all the other crap gets to go into good food, fruits, vegetables, and meat, and keeping that close to home.

I’m off sugar. I’m doing honey and maple syrup, and that was the hardest for me. Alcohol was no problem. Processed meat was hard because I loved sausages, but when I took out sugar, I felt like a crazy person. It took me months, but now I’m here. Once a month, if I go out to dinner and someone gets dessert, I’ll have a bite or two. It tastes delicious and wonderful, but it tastes too sweet.

I freeze bananas and cover them in a sugar-free non-dairy chocolate. My sweet tooth is completely gone, which is amazing. Now I have a bite of a real dessert and I’m like, “Whoa!”

Getting rid of all the artificial sweeteners and caffeine is a new one. I was doing caffeine for the first six months and when my adrenals got shot and I stopped working, I was like, “Why do I even need caffeine?” It’s a habit that I had to break. Occasionally, I’ll have a chai tea, but for the most part, I’m off caffeine.

Drinking tea every night has become an awesome ritual that I love. I was never a big tea drinker, but the practice of making it, drinking it, and going to sleep after has been nice. All those things have felt supportive. I feel like I’m helping my body through this process. It’s hard on my body and if there was anything else inflammatory going on in my body, if I was trying to fight it with all that crap, you’re adding insult to injury and making it harder on yourself.

I feel like I have this very clean vessel to soak in the medicine and help myself heal, which has been my favorite part. I got a lot of cancer-fighting and anti-inflammatory cookbooks and found new ways to make dinner for my husband and myself. I’m sure there are things he misses that I’m not making. But fortunately, we were both already gluten-free and have gone dairy-free as well. He’s been on board with that, but I still make a steak every now and then.

Thank you for sharing your story, Cheyenne!

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From Doctor to Patient: Shiva Faces a Double Cancer Diagnosis: Rectal and Kidney Cancer

Post author By Katrina Villareal
Post date September 1, 2025
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September 1, 2025

From Doctor to Patient: Shiva Faces a Double Cancer Diagnosis: Rectal and Kidney Cancer

When Shiva, a family doctor from Toronto, first noticed stomach pain, hemorrhoids, and nagging backaches, he chalked it up to stress. After all, he was in the process of moving across continents with his wife and three young kids. But when a friend’s story nudged him to book a colonoscopy at age 40, he found himself waking up to life-changing news: rectal cancer.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

As if that wasn’t enough, follow-up scans revealed a separate case of kidney cancer. While the thought of two different cancers could have been overwhelming, Shiva chose to view it as a strange kind of relief that it wasn’t metastasis. His dark humor helped him cope, but what truly carried him through was his family’s love and an incredible care team at North York General Hospital.

Treatment began with chemoradiation: chemotherapy tablets and six weeks of daily radiation. Shiva described the nausea, fatigue, and anxiety of rushing to appointments with a full bladder as more mentally draining than physically. He admitted that “scanxiety” is real, the unease that creeps in before every test or scan. Throughout it all, he leaned on resilience, therapy from psych-oncology, and support from his wife, kids, and community.

Eventually, doctors recommended surgery, which was an eight-hour operation that combined kidney and bowel procedures. Shiva also received an ileostomy, something he adjusted to with surprising grace thanks to excellent stoma nurses and persistence in regaining independence. He continued with immunotherapy for the kidney cancer, grateful to have access to cutting-edge treatment with minimal side effects.

Shiva often reflects on the emotional toll. He speaks candidly about post-traumatic stress, the way everyday aches trigger worry, and how mental health support became as important as physical recovery. Importantly, he emphasizes that health is a privilege and advocates for accessible, inclusive care so no one is left behind.

Now cancer-free, Shiva describes himself as changed. He prioritizes self-care, cherishes time with his children, and embraces life with renewed perspective. He encourages others to trust their care team, seek mental health support, and live fully, whether that means enjoying a simple meal or saying yes to experiences without delay. His story is about resilience, appreciation, and the reminder that life, however uncertain, is meant to be lived wholeheartedly.

Watch Shiva’s video to find out more about his story:

Discover how a doctor became a patient and found resilience.
What Shiva learned about life after rectal cancer and kidney cancer
The hidden mental health side of cancer care you don’t hear about
Why therapy and humor helped as much as treatment
How family, faith in care, and small wins kept him grounded

Scroll down to read the transcript of Shiva’s interview.

Name: Shiva S.
Age at Diagnosis:
- 41
Diagnoses:
- Rectal Cancer & Kidney Cancer
Staging:
- Rectal: T2
- Kidney: T3
Symptoms:
- Pressure and urgency of bowels
- Back pain
Treatments:
- Chemoradiation
- Surgery: ileostomy, combined bowel and kidney surgery
- 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.

Table of Contents

Hi, I’m Shiva
When I first noticed something was wrong
The moment everything changed
Additional scans revealed the unthinkable
My treatment plan
The next step was ileostomy surgery
Adjusting to life with an ostomy
I have scanxiety
I’m a changed person now
My advice to others

Hi, I’m Shiva

I’m Shiva. I’m from Toronto, Canada, and I was diagnosed with T2 rectal and T3 renal cancer in 2024.

When I first noticed something was wrong

In 2023, we moved from England to Canada. I’m a family doctor. We were moving with my family, my wife, and my three kids, so it was obviously a very stressful time. Throughout my life, I’ve always had trouble with my bowels and stress, so I didn’t think too much of it. I couldn’t think of a more stressful time than moving with three small kids.

The symptoms, like hemorrhoids and a vague tummy pain, came up and didn’t go away, and that was the problem in retrospect. I was having back pain, but nothing specific or anything that stood out. I’d like to think, as a physician myself, any big red flags and a little embarrassingly, it turned out to be cancer.

The reason I went for a colonoscopy was because I had a friend whose wife was unfortunately diagnosed very young with a different kind of cancer. I thought to myself, “I’m 40. What would I say to my own patients? I should go for a colonoscopy.” I had my family doctor refer me for one. Luckily, it was very quick, so I didn’t have to wait or argue about getting an investigation. I didn’t have to pay for it because I’m in Canada, which was also great.

The moment everything changed

After I had it done, I woke up to the biggest shock of my life. I worked in family medicine and general surgery, so I’d seen and done colonoscopies on patients and operated on them. As soon as I woke up, I knew something wasn’t right. There weren’t any pamphlets about managing your hemorrhoids. I was thinking to myself, “This is it. This is not going to be a good day.”

Sure enough, I was taken to a very quiet room and waited to get the news. Certain parts of the day are a bit of a haze, but that moment, I remember crystal clear every little bit. As I waited for my wife to pick me up, I knew that she was not going to expect this.

In retrospect, I don’t know what I would have done differently.

I was in shock. I had it in my head that I needed to tell people right away. Shock was a protective mechanism. I didn’t know what to do. I thought, “I’m going to tell my family and whoever I have to tell. I’m going to call up friends who could help me get a plan in place,” all while having a ton of bricks dropped on you and figuring out your position in life. I just turned 40-something and I’m mortal, it turns out.

I didn’t want to sit around and ruminate about what’s going on or what’s going to happen too much. The first thing I had to do was to get everything in place and get everyone I needed on board because it was going to be a rough ride. I was lucky enough to have a friend who works in this field. I didn’t hold back in asking whoever I needed to ask and they recommended excellent people at North York General Hospital here, who took everything on from there.

Additional scans revealed the unthinkable

It was a matter of getting a plan in place. I had CT scans and MRIs within a week. I met with the surgeon who put everything together and then met with the oncologist. It was a matter of coordinating everything and trying to stay as normal as I could for the kids. At that time, all my kids were under seven years old, so we had to carry on. We had to pretend everything’s okay, even though I feel like sitting on my bed and not doing anything.

The next step was getting the scans, which showed a lump on my kidney as well. I thought, “Great. This is a metastasis,” but we don’t know yet. They said they’re going to have to do a biopsy. Then they said, “We need to do another scan because there’s another lump on your femur bone.” They said it doesn’t look like anything, but from my perspective, we can’t take anything for granted. At that point, I said, “Can we not scan anything anymore? Because every time you put me through a scanner, you’re finding something. Let’s get these blinkers on and deal with what we got.”

Thankfully, that bony thing turned out to be nothing, but the lump on the kidney turned out to be another cancer on its own that happened to be picked up. I remember thinking it was good news because it’s not a metastasis. Then I remember thinking, “Wow. The bar has gotten so low that it’s better to have two separate cancers than one that’s metastasized.” I laugh at it now. I’ve got a dark sense of humor and that’s how I cope.

I went to see the urologist to make a plan. It was all about timing. What should we do next? Should we operate? Should we do chemotherapy and radiation? Should we do chemotherapy upfront and take a chance? I was told we could do anything. There are options. You have to trust that you’re going to get the best advice.

I have nothing but good things to say about the team at North York General. To be honest, there’s no way I’d get through any of this without my wife and my family. If I were to do this on my own, it’d be too much. I would withdraw at that point. Thank God I had, like all these people around me, but especially my wife, to pull it all together.

My treatment plan

The overall plan after meeting with everyone was to get chemotherapy and radiation. The chemotherapy is going to be in tablet form and six weeks of radiation every day, five days on and two days off. We’ll see how everything goes and then decide if we need to do more chemo or surgery. I met with the radiation oncologist and got everything in place. I got my little tattoos done, which was unbelievably painful even though they’re three little dots.

I remember walking around a hardware store because I had to use the bathroom and having the most nauseating experience. I thought, “Is this going to be six weeks of this?” I didn’t know what was going to happen. I didn’t know what to expect. I said I would never go back to that hardware store again because you start associating places and smells. It’s all vivid. Thankfully, that settled down and didn’t come on with the radiation. They said the chemo tablets would make the radiation work better. The main thing I experienced was unbelievable nausea. I wasn’t vomiting, but I didn’t feel like eating anything.

The other thing was having to drink so much water to get the radiation done every morning. I drive 30 minutes and my bladder has to be absolutely full. You feel nauseous, plus the anxiety of being caught in traffic and not arriving on time. You have all these feelings.

I’m lucky to have these options. I’m lucky to be able to go through this and you don’t want to waste it. At the same time, going to the radiation wing of the hospital, you’re surrounded by people with cancer at various stages. That was a big side effect mentally, seeing people going through the same thing. You are at different stages and you’ve got this big question mark in your head. “Is that going to be me?” That was hard to deal with.

The other side effects were a bit of tingling and numbness in the fingers, but nothing too bad, and a bit of skin irritation.

With general practice, I was working with breast cancer patients. Sometimes, people tolerate radiation well, but some people don’t. When you know these things, you think of the worst-case scenario. You think of the worst person you’ve ever seen.

You start delving into stuff. I came across The Patient Story, which was good therapy for me in a way because I was reading about people my age. You’re trying to take away things and see how people dealt with stuff. But at the same time, you’re hearing about these horrible side effects some people get. When you’re in Canada and you’re not paying for it, you think, “Give me everything as long as I can tolerate it. This is all going to be for the benefit. No pain, no gain.” That was my thinking, but it was tiring.

The big thing was the fatigue. I didn’t realize it until I finished treatment. It’s like, “Wow. I feel like eating better. I feel like drinking more water. I feel like exercising.” This cloud hangs over you for a bit, but you don’t even realize it when you’re in it. It’s a lot of adrenaline, too. You’re exhausted.

When I finished radiation, I had a break. They’re going to redo all the scopes and everything. It’s been six months. This can either be good or bad, and you’re waiting for that, so that was nerve-wracking as well. I was thinking about things a lot more. Everything seemed amplified then. I don’t know if there was a bit of a rebound swelling, but symptoms I didn’t have started coming up, like pressure and pain.

I remember preparing for the colonoscopy and the MRIs, and I thought, “I can’t do this again. I can’t do another enema. I’ve had to do so many enemas for these investigations. It’s so painful.” I thought I was going a little bit crazy with the pain. My pain threshold is not good. Thankfully, I have not had to do that again.

They said, “Let’s go for surgery now. Let’s schedule it for the day after Father’s Day.” You start thinking about these things. Again, you have to keep going. It was a surreal experience, but my surgeon was amazing. The first day he met me, he said, “Look, I know this is a lot for you. You know too much. Your head is going to be all over the place. I’m going to get you to talk to someone from psych-oncology. Talk to them.” It was non-negotiable.

Having never spoken to a therapist, I thought it was good to have that. That was an amazing experience to have someone to talk to. That was the holistic care that we all talk about and aim for. That’s why the whole team at the hospital was absolutely amazing.

The next step was ileostomy surgery

Surgery was interesting. A few weeks before, the surgeon said to me, “You’re going to have to have an ileostomy,” and I was alright with that. I want maximal therapy and I totally trusted him. It’s not ideal. Nobody likes the idea of having a bag, but when you consider the alternative, it’s not bad.

To be honest, you get used to it. We’re at the point where we’re thinking if we’re going to reverse it, but I don’t want to jump out of the pan into the fire. I’m happy if it’ll go, but you don’t know what’s coming next either. I don’t know what that recovery is like either.

Surgery took a lot out of me because they did the kidney surgery and the bowel surgery at the same time, so it was eight hours of operating time. I remember coming back to the ward and being absolutely out of it. It took about a week before I got out of the hospital, which was probably a bit longer than anticipated, but I needed it. It was great to be in a place where they’re not kicking you out and to have that luxury. It was good to get out, but they allowed me to recover. Everyone was amazing about it.

The psychiatrist knew me and she said, “You’re a stoic person. You’re not going to say when you’re in pain. Stay for a couple of days.” It’s amazing to have someone advocating for you in that way because I felt helpless at times and you don’t want to put anyone out. Am I blocking the bed for somebody else? I don’t want to be a burden. If someone else needs surgery, what if I’m in their bed? No, you need to get better, too. You need to be in a better spot.

Health is a luxury. Having someone to advocate for you is a luxury. My wife and my mother-in-law were helping look after the kids while I was gone. It was hard to be away and keep it all under wraps, but the kids were amazing. Everyone was amazing.

Adjusting to life with an ostomy

Post-op, it was time to get better, physically, mentally, and emotionally. You’re trying to recover. You’re waiting on test results. Is everything going to be fine with my lymph nodes? Is anything unexpected coming up? You’re waiting and trying to get back physically to where you were.

I was eating the blandest food now with the ostomy. I love my food and I can’t eat anything I want to eat. All I could eat was rice pudding. I never want to see rice pudding again. It’s delicious, but when you eat it 20 days in a row, no thanks. I had to change my diet. I also did a lot of pacing around in my backyard and walking around the neighborhood as my exercise. I didn’t want to push myself too far.

Getting used to the ostomy partly involved getting used to eating again. It was surprisingly easy to manage. When you’re at home, it’s different. The stoma nurse was amazing in teaching me how to manage it. People gave me a lot of leeway because I’m a doctor, but you’re doing it in front of a mirror. It’s different as a doctor and as a patient. She was good and gave me the confidence that I needed to know that I can do this. Sure enough, I did. When you’re figuring things out, you figure them out pretty quickly because you only make that mistake once or it becomes the new normal for you.

Here, you get a grant that helps pay for some of the medical equipment, but these are expensive. I don’t know what people do who can’t afford it. The big fear for me was being out in public and having to change my bag. In the beginning, I was going to regular bathrooms and I wondered if I could use the disabled one. Does this count? I’m trying to rationalize. You don’t want to get harassed by someone and be told you shouldn’t be in there. Sometimes I do and sometimes I don’t. It’s these silly things that go through your head.

I had to take some more chemotherapy tablets after the surgery. I experienced the same thing with the tiredness. The nausea wasn’t as bad. I got immunotherapy at the same time. A year of that and that was more for the renal cancer. After all the testing, they said I was eligible for it.

For the immunotherapy, I had to go to the chemo ward for it, but it’s not like chemo. I didn’t have any side effects, but I hear people who have them and have to stop treatment because of the side effects. I feel lucky that I’ve been able to get it with relatively few, if any, side effects. Thank God for it. If it does everything it says, like improve survival and this and that, great. Keep it coming.

Now we’re at a point where we’re thinking about whether we can reverse the stoma. Soon, hopefully.

I have scanxiety

The small things that people say can make such a big difference mentally. I was still in the hospital and the oncologist came by to say hi and see how I was doing. He said, “Congratulations, you’re cancer-free now.” I know it meant so much for my wife to hear that and it meant a lot for me to hear that. I was in a little bit of a daze post-operatively, but it stuck with me. This is it. We’re starting fresh again.

I get scans every six months. Regular colonoscopies will be the new way forward. You can’t predict the future. You don’t know how things are going to be. But if you ask me, I can say I’m cancer-free. My oncologist told me and as far as I know, he’s right.

Do I get anxious when there’s a scan? Yes, every time it seems. Maybe it’s just in my head, but I feel it every time I’m going through something else or another symptom comes up. The scanxiety that everybody talks about is real. You think about every pain that you get now. I don’t think about it until there’s a scan coming up. I try and rationalize the symptom by saying everyone else experiences it, but I can’t take it for granted because I didn’t think that this would be anything when I said I should get a colonoscopy.

Unfortunately, these things happen. I’m more aware now of what I put into my body. I’m at a stage now, thankfully, where I’ve got so much more energy and the fog’s been lifted. Before, it was more of I can do things, but it’s like doing them underwater, so you’re doing them slowly. You’ve got the motions down. But now, the fog’s been lifted and I find I can do things now. I can be healthier. I can make healthier choices and get myself in better shape.

I want to get back to normal. That was in the past. This is the present and the future. You have to enjoy your life and everything about it now. It took a lot to get to that mental stage. There are good days and bad days, mentally more than anything.

I’m a changed person now

You don’t think about your mortality. There’s an innocence that I feel like you lose. It’s hard to listen to things or see things, and have it not go back to cancer. They trigger you. Your mind goes to, “Will I ever be 90 years old? Will I ever get to that stage in life?” Maybe. Not many people get to 90 anyway. But that innocence about things. Watching a movie trailer and seeing it’s about a person with cancer. It’s like, “Great. Do I want to watch this? Is this going to be a downer?” In the past, I would have watched it with no issues.

I did a lot of research on myself — self-audit is how I think about it. Cancer is so traumatic. Post-traumatic stress is how it was explained to me. There are different things you can do for that, like journaling and writing. I never did that and I never thought about doing that, but you have to do it. In the same way you trust your surgeon, you have to trust that inner monologue in your head. You have to trust the therapist or oncologist or whoever tells you that you need to work on these things because it’s going to help with your recovery and reestablish yourself. You can either totally withdraw or embrace it and channel it into something good.

I’m not at a stage where I feel like my kids are not going to understand this. There’s going to be a day when I want them to understand it and they’ll have to. I hope they would see this and help them understand that weird summer we had when we couldn’t jump on daddy’s tummy.

You lose that bit, but you gain so much. I’ve gained this appreciation for things. Do the things that you want. Don’t put them off. Live in the moment. I wasn’t doing that before. I wasn’t looking after myself the same way. I was the type of doctor who you do as I said, not as I did. Now I take the time to look after my body and do the things that mentally help me feel better, and I prioritize those for my overall health. That’s a legacy that I want to leave for my kids, the habits that they should do, so that they’re never in this position.

My advice to others

Positivity is definitely a luxury in life. That’s what we have to prioritize in life. You can do everything right and still get cancer. But at the same time, you’re going to get through it. You’re going to see the other side of it. You’re here now, so you might as well enjoy it. There’s so much to be worried about in this world. The world’s going to keep turning. It doesn’t revolve around me.

I’ve got so much to be thankful for, like my wife, my kids, my family, and my friends. It’s been a crappy time, but everyone has been amazing and if nothing else, it made me appreciate life so much better.

Go and enjoy life. Whether you live to be 90 or not, you have a limited time on earth. Use 100% of that time. Don’t shut yourself out of this world because you’ve been diagnosed with something. Thank God for socialized medicine. The most important thing that we have as a society is to look after our own health.

I’m glad that I had such an amazing team of people at North York General Hospital. I’m sure there are great teams everywhere. Trust your doctors. Trust your nurses. Trust everybody looking out for you. Trust the cancer researchers. It can happen to anyone, unfortunately, but it’s not a death sentence by any means. It’s not a fun ride, but the ride ends and you go on living.

Thank you for sharing your story, Shiva!

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Allison’s Example of Self-Advocacy Living with Stage 4 ALK+ Lung Cancer

Post author By Katrina Villareal
Post date August 27, 2025
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August 27, 2025

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.

My Stage 4 Lung Cancer Diagnosis Video

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

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.

Thank you for sharing your story, Allison!

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More ALK+ Lung Cancer Stories

Shauna D., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)

Symptom: Persistent dry cough following a cold
Treatments: Targeted therapy (tyrosine kinase inhibitors), radiation therapy

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

Symptom: Severe back pain
Treatments: Targeted therapy (ALK inhibitors), radiation therapy

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

Symptoms: Weakness, decline of performance in sports, depression, pain in left foot
Treatments: Radiation therapy, targeted therapy

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

Symptoms: Persistent cough, wheezing
Treatments: Surgery (bilobectomy), chemotherapy, targeted therapy

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

Symptom: Severe pain in her side

Treatments: Chemotherapy (targeted therapy), radiation

Tags ALK+, Biomarker Testing, stage 4

Chemotherapy FLOT (fluorouracil, leucovorin, oxaliplatin, docetaxel) FOLFOX (folinic acid, fluorouracil, oxaliplatin) Gastrectomy Patient Stories Radiation Therapy Robotic distal gastrectomy Stomach Cancer Surgery Treatments Xeloda (capecitabine)

How Faith Sustains Maria Through Incurable Stage 4 Stomach Cancer

Post author By Katrina Villareal
Post date August 24, 2025
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August 24, 2025

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.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

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.

Thank you for sharing your story, Maria!

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How Flu-Like Symptoms Led to Megan’s Stage 4 Melanoma Diagnosis

Post author By Katrina Villareal
Post date August 20, 2025
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August 20, 2025

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.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

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.

Thank you for sharing your story, Megan!

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Decades of Unanswered Symptoms Finally Lead to Michelle’s Stage 1 Papillary Thyroid Cancer Diagnosis

Post author By Katrina Villareal
Post date August 18, 2025
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August 18, 2025

Decades of Unanswered Symptoms Finally Lead to Michelle’s Stage 1 Papillary Thyroid Cancer Diagnosis

Diagnosed with stage 1 papillary thyroid cancer at 39, Michelle had already spent decades dealing with unexplained health problems: mood swings, extreme weight changes, painful periods, digestive issues, anxiety, and crushing fatigue. For years, she was dismissed, being told that they were all in her head or to diet and exercise more. In reality, her body had been sending warning signs that no one connected to her thyroid.

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

When a lump in her clavicle appeared, Michelle pushed for answers despite being told it was “nothing.” She finally insisted on an ultrasound, which led to a biopsy and the diagnosis. What followed was a crash course in papillary thyroid cancer, a disease she didn’t even know existed.

Surgery was urgent, but Michelle refused the first surgeon who wouldn’t prioritize preserving her voice. Instead, she found a skilled doctor who discovered that the tumor had wrapped around her vocal cords and carotid artery. Choosing to go with that doctor likely saved her voice and, possibly, her life.

Treatment didn’t end there: Michelle had another surgery, radioactive iodine therapy, lymph node removals, countless scans, and eventually ethanol ablation for a new tumor. Alongside the physical toll came the emotional one. Michelle was told papillary thyroid cancer was the “good cancer” and was also discouraged from even calling herself a cancer patient. Without support groups or resources, she felt silenced, on top of dealing with chronic tall cell cancer, which still lives in her neck and requires constant monitoring.

Michelle’s advocacy now is rooted in what she wishes she’d known: “Check your neck.” She urges anyone, especially women with unexplained hormonal, menstrual, or weight issues, to demand a full thyroid panel. If a doctor won’t listen, find one who will. She knows firsthand how exhausting it can be to keep pushing, but she’s living proof that persistence matters.

Michelle also speaks openly about the mental health impact of cancer — how fear can linger long after treatment, how years of being dismissed or not taken seriously by doctors can affect your sense of self, and how finding the right balance between wellness and joy is key. She’s reclaimed her body, her career, and her voice, both literally and figuratively. And she’s determined to make sure other thyroid cancer patients are recognized, respected, and heard.

Watch Michelle’s video to find out more about her story:

The lump everyone dismissed and why she kept pushing for answers.
What papillary thyroid cancer really feels like to live with.
The comment that made her walk out of a surgeon’s office.
How years of unexplained symptoms finally made sense.
Why self-advocacy is the reason she still has her voice.

Name: Michelle L.
Age at Diagnosis:
- 39
Diagnosis:
- Papillary Thyroid Cancer
Staging:
- Stage 1
Symptoms:
- Hormonal imbalances beginning around age 10
- Severe mood swings and depression
- Unexplained weight gain and weight loss, no control over fluctuations
- Chronic digestive issues: constipation, bloating, distended stomach, general digestive discomfort
- Frequent illness and weakened immune system
- Painful and irregular periods
- Anxiety and insomnia
- Persistent fatigue and low energy
- Noticeable lump in the neck, initially dismissed as swollen gland
- Difficulty singing
- Shortness of breath from minimal exertion
- Physical weakness
- Pain radiating down the arm
- Loss or change of voice
- Hormonal imbalance symptoms intensifying before diagnosis
Treatments:
- Surgeries: lymphadenectomy, total thyroidectomy, partial right neck dissection
- Radioactive iodine therapy
- Ethanol ablation

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.

Thank you for sharing your story, Michelle!

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How an ER Visit Uncovered Hayley’s Pancreatic Neuroendocrine Tumor (pNET) at 27

Post author By Katrina Villareal
Post date August 15, 2025
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August 15, 2025

How an ER Visit Uncovered Hayley’s Pancreatic Neuroendocrine Tumor (pNET) at 27

At just 27 years old, Hayley’s life took a completely unexpected turn. She was living a busy, family-focused life when sudden pelvic pain sent her to the ER. The scans didn’t explain the pain, but they revealed something she never saw coming: a mass on her pancreas. That incidental finding turned out to be a pancreatic neuroendocrine tumor, a rare diagnosis that often goes unnoticed until much later.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

What’s striking about Hayley’s experience is how quickly things moved. Because she was already working with a surgeon for a completely unrelated concern, she was able to get a biopsy within weeks. The tumor was small enough for her to qualify for a Whipple procedure, also known as pancreaticoduodenectomy. This complex, hours-long surgery removed part of her pancreas, duodenum, bile duct, and gallbladder. She didn’t need chemotherapy, something her medical team told her was a huge blessing.

Even though Hayley’s treatment happened fast, its mental and emotional toll has been long-lasting. She admits that she struggles with “scanxiety” before each follow-up imaging and feels the weight of survivorship, especially knowing she’s much younger than most people diagnosed with pancreatic cancer. She also deals with lasting digestive changes from the procedure, forcing her to completely rethink her diet.

Through it all, Hayley has stayed focused on what matters most: her son. Being apart from him during surgery was the hardest part, but she credits him with motivating her to get through every step. She’s deeply grateful to the ER doctor who took her situation seriously and pushed for follow-up, believing that early detection quite literally saved her life.

Her advocacy centers on the importance of early detection. Hayley hopes that one day, full-body scans will be part of routine physicals so more people have a chance at catching serious illnesses before symptoms appear. She wants others to know that survivorship looks different for everyone, and that even when the road is difficult, there’s hope.

And in a surprising twist, those scans revealed more than cancer: Hayley learned she was born with one kidney and a unicornuate uterus, conditions she never would have discovered otherwise. That makes her son’s full-term birth feel even more miraculous. (Editor’s Note: A unicornuate uterus is a rare condition where only one half of the uterus forms.)

Hayley’s story is a powerful reminder to listen to your body, advocate for yourself, and push for answers because sometimes the thing you weren’t looking for ends up being the most important discovery of your life.

Watch Hayley’s video to find out more about her story:

How unexpected pelvic pain led to an early pancreatic neuroendocrine tumor diagnosis
The rare discovery that may have saved her life at just 27
Why her doctors called her one of the “lucky ones”
The life-changing truths she learned from a single scan
How early detection shaped her future and her mission to help others

Name: Hayley O.
Age at Diagnosis:
- 27
Diagnosis:
- Pancreatic Neuroendocrine Tumor (pNET)
Symptoms:
- Severe right-sided pelvic pain
- Nausea
- Diarrhea
Treatment:
- Surgery: Pancreaticoduodenectomy (Whipple procedure)

Hayley O. neuroendocrine pancreatic 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.

Thank you for sharing your story, Hayley!

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The Power of Positivity and Advocacy in Mary’s Stage 4 Endometrial Cancer Care

Post author By Katrina Villareal
Post date August 15, 2025
No Comments on The Power of Positivity and Advocacy in Mary’s Stage 4 Endometrial Cancer Care

The Power of Positivity and Advocacy in Mary’s Stage 4 Endometrial Cancer Care

Mary’s story is a reminder that life can shift in an instant, but so can your focus, priorities, and resilience. In September 2023, she was diagnosed with stage 4 endometrial cancer (stage 4B) after a late-night ER visit with the symptom of sudden right-side pain. Until that moment, her only clues were unusual fatigue and a couple of unexplained UTIs, which she and her doctors linked to her recent diabetes diagnosis.

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

When scans revealed a mass, things moved quickly. She was scheduled for a procedure that same night to place kidney stents, a fast referral to oncology, and eventually an open h ysterectomy in late October. Surgeons discovered the cancer had spread to both ovaries and fallopian tubes, but thankfully not to other common areas like the bladder or liver.

Mary’s approach from the start was grounded in trust, education, and a commitment to living fully. She leaned on a stellar care team that developed a treatment plan tailored to stage 4 endometrial cancer. This included six rounds of chemotherapy, followed by ongoing immunotherapy infusions.

While the fatigue and bone pain from treatment were rough, Mary says she fared better than many, avoiding severe reactions or illness. She also benefited from strong advocacy within her medical team, especially when insurance initially balked at covering her treatment before it was officially approved for endometrial cancer.

Her mindset was to stay positive, stay involved, and to keep doing what matters. Mary believes in being an informed, proactive patient by researching enough to understand her stage 4 endometrial cancer diagnosis, asking questions, and trusting her doctors when evidence-based recommendations aligned with her needs. She encourages others, especially women, to listen to their bodies, push for answers, and not dismiss even small changes in health.

Outside of treatment, Mary continues to work, travel, and immerse herself in the hobbies she loves, from antiquing to gardening. She makes time for concerts, dinners with friends, and family trips, including a bucket-list Alaska cruise in the works. Her community of family, friends, and neighbors has been a lifeline, stepping in with meals, rides, and everyday support. For Mary, this experience reinforced the value of connection, self-advocacy, and finding joy in both small outings and big adventures.

She hopes sharing her experience helps others learn about stage 4B endometrial cancer, the importance of early evaluation, and the reality that advanced disease still has multiple treatment paths. “It’s about living your life,” she says, “and not letting fear keep you from what matters most.”

Watch Mary’s full interview to find out more about her story:

How a late-night trip to the emergency room changed Mary’s life
The treatment decision that made all the difference for her
Why she says attitude is just as important as medicine
The surprising role her friends and neighbors played in her care
Her must-hear advice for women about paying attention to symptoms

Name: Mary M.
Age at Diagnosis:
- 58
Diagnosis:
- Endometrial Cancer
Staging:
- Stage 4B
Grading:
- Grade 2
Symptoms:
- Unusual fatigue
- Urinary tract infections
- Extreme pain on the right side of the abdominal area
Treatments:
- Surgery: hysterectomy
- Chemotherapy
- Immunotherapy

Thank you to Karyopharm for supporting our independent patient education content. The Patient Story retains full editorial control.

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

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

Table of Contents

Introduction
When I First Felt Like Something Was Wrong
What Happened in the Emergency Room
Learning About Endometrial Cancer
My Husband as a Care Partner
The Support I Received from Family and Friends
How I Found My Care Team
My Reaction to Finding Out I Had Endometrial Cancer
My Treatment Plan
The Side Effects I Experienced from Treatment
Playing a Role in Treatment Decisions as a Patient
Talking With My Care Team About Clinical Trials
How I Continue to Live My Life
What I Want Others to Know

Looking back, I probably had a couple of symptoms that I did not realize.

Introduction

My name is Mary and I was diagnosed with stage 4 endometrial cancer (stage 4B) in September 2023. I have a husband and two kids, who are now 21 and 20. We adopted our kids from Guatemala and they have been with us since they were babies. After we had fertility issues, we decided adoption was the way to go. It was easy for us because my father-in-law is adopted and I have some cousins who have adopted children, too.

I grew up in St. Louis, Missouri, and have lived here my entire life, except for the time I went to college at the University of Missouri, which is two hours away. I’ve spent most of my life working as a paralegal.

I enjoy doing so many things. I love gardening. I love walking. I like spending time with my family. I do a lot of antiquing, whether it’s painting furniture, refinishing things, redoing things, trying to critique things, or creating things to make them a little better than when I got them. I have booths at two antique malls in St. Louis.

I like hanging out with friends. I love live music, concerts, and musical theater. I like to read. For many years, I wasn’t able to read much, but I’ve got a little bit more time to do that now, so I’m trying to read some things I haven’t read. My favorite genre is murder mysteries.

My family and friends would probably say that I have a good sense of humor. My kids would say I can be judgmental at times, although I try to do my best with that. It’s usually done in good humor and not in a mean way.

I have done so much volunteer work over the years. I love to do volunteer work, like with the parent-teacher association at school. I love to travel. I like to go to places I’ve never been before. I don’t want to always go to the same place. I like seeing something new.

My daughter would say I’m always dressed up. I don’t feel like I’m fancy, but I do like to wear dresses and I’ve always liked to since I was a child.

I started having pain in my right side, which was pretty intense and I have a pretty high pain tolerance.

When I First Felt Like Something Was Wrong

Looking back, I probably had a couple of symptoms that I did not realize. I was a little more tired and I am not a napper. I’ve never been a napper, so I should have known that was something.

I had a couple of urinary tract infections (UTIs) and I also never had a UTI before. I’m diabetic, so they were always assuming it had something to do with it, but I had only been diabetic for about a year, so that was still new. They thought it was diabetes or kidney-related. I was put on some medicines and the UTIs went away.

One evening in September, I started having pain in my right side, which was pretty intense and I have a pretty high pain tolerance. It was 10:30 p.m., so I thought I’d try to sleep it off, but if it’s still bothering me in the morning, I’d call the doctor.

It didn’t occur to me to take some pain medication. I don’t like to take anything I don’t have to take. I remembered my mom having her gallbladder taken out when I was in high school. I thought that if anything’s wrong and they need to take my gallbladder out, I probably shouldn’t have anything in my stomach.

It kept hurting, so my husband and I finally decided that since it’s 2:00 a.m. and no one’s getting any sleep, we should go to the emergency room. We looked at the online check-in and there was no line, so we took it as a sign to go since nobody was there and we live 15 minutes away.

At the ER, they initially thought it was my gallbladder. Then all hell broke loose after that.

‘We think something is pushing on your kidneys, so we need to put stents in.’

What Happened in the Emergency Room

They took us in right away. They checked my blood pressure and temperature, and asked a million questions. I hadn’t had any issues prior. I wasn’t having intestinal issues or inability to tolerate spicy food. Nothing weird had been going on.

They started with an ultrasound and gave me pain meds through an IV. During the ultrasound, I thought, “Could she push harder on this area? It’s painful.” Then she said, “We need to do a CT scan.” It all happened quickly because the ER wasn’t crowded. During the scan, he said, “Oh, yeah, I don’t know. I see something in there.” They don’t tell you anything at that point.

We go back to the room and my husband said, “I’m going to let the dog out.” I said, “Let the dog out? Can’t we call a neighbor to let the dog out?” He left to let the dog out and not even 15 minutes after he left, two doctors came in. They introduced themselves and they were very pleasant.

They said, “We think something is pushing on your kidneys, so we need to put stents in. There’s some kind of mass in there. We have an opening and we can do it at like 8:45,” which was 45 minutes from then. It all happened very fast.

I still see the urologist whom I met that night. He’s a nice, very comical guy. I like his personality. He’s a little younger, so I like that too, because I don’t want to have a whole bunch of doctors who are older than I am.

After the procedure, they decided to let me stay the night. I had a temporary catheter in and they wanted to make sure everything was okay. Back in the room, the doctor came in and said, “The surgery went great. We got the stents in. They can stay in for up to three months. We’re going to have an oncologist come in.”

Until he went in to do the hysterectomy, he still thought it was ovarian cancer. It turned out to be endometrial cancer.

At that point, I thought, “Wait a minute. What’s going on?” That was the first time anybody mentioned cancer. I thought about it when they initially said mass, but I wasn’t putting the cart before the horse. My oncologist ended up having a bad reaction to his COVID shot, so he couldn’t come in until the next morning.

When he came in, he said, “We’re going to have to do some more tests. We need to do a PET scan, but I see something on your ovaries. I think you have ovarian cancer. I’m going to schedule a PET scan. I need you to come into the office next week.”

Everything moved quickly. You hear some people who wait forever trying to get in. It was all very fast for me. I was wondering if it was good that everything’s happening fast or if it meant it was bad because everything’s happening.

The following week, I had my PET scan.

Learning About Endometrial Cancer

I got scheduled for a hysterectomy. He was going to be out of town, so he didn’t want to do it for a few weeks because he wanted the stents to have a little time to heal. I had my hysterectomy on October 30. It was an open hysterectomy, not laparoscopic.

Until he went in to do the hysterectomy, he still thought it was ovarian cancer. It turned out to be endometrial cancer. It had traveled to both ovaries and fallopian tubes. It was a large tumor — grapefruit-sized, is what he said.

I had already gone through menopause. I had just turned 58 when I was diagnosed. I went through menopause four years prior. I didn’t experience menopause like other people have. I didn’t get hot flashes. It was just my face that got hot. I did not have the worst experience. I know so many endometrial cancer patients have had bad periods and bad bleeding, and I never had that.

The worst part was calling to tell the kids since they were both away at college.

The worst part was calling to tell the kids since they were both away at college. It would have been different if I were able to tell them in person. It was hard on them because my brother passed away a year before due to complications from COVID and they were close to him. He was young and he wasn’t sick before that. He had a bad two years, but it was all COVID-related.

We told them before the hysterectomy because it took about a month to get the hysterectomy. My son was freaked out. He wanted to come home that day and I told him, “Let’s wait. Let’s see what’s going to happen. I’m still at the hospital.”

Two days later, he came home. He didn’t have a car, so he asked somebody to drive him home. It was a friend he’s had forever, so it was nice. He lives near us and they went to preschool together.

My daughter came in the following weekend. She took a train from Chicago. I think they felt better. I think they thought I was going to look terrible and I looked normal. I don’t look sick. You can’t always tell somebody’s sick by how they look.

My Husband as a Care Partner

He’s incredibly supportive. He will do anything for me. He drives me anywhere I need to go. I can drive and do all those things, but he is very ready to help with everything all the time. It was a change because I’m the motivator of everyone in the house. If something’s going to get cleaned, it’s because I’m motivating people to clean.

He was upset. He was trying to keep himself contained, so I didn’t see him upset. I got more upset. We’re not crazy emotional. One of his sisters is a nurse, so he was on the phone with his sister, when I didn’t know he was on the phone, trying to figure out what was going on and how things were.

The support I have had from friends and family has been amazing.

The Support I Received from Family and Friends

The hardest thing is telling everybody. I have several groups of girlfriends. He was also talking to a couple of my girlfriends on the side, telling them what was going on. It was a lot, but I think he was trying to take over everything.

I’m the super positive one. I always think everything’s going to work out no matter what. Through this diagnosis, through everything, I still think it’s all going to work out. We’re going to make it work. Whatever we need to do, we’ll do.

I have one sister. Telling her was hard, too. The nieces and nephews are all concerned. There was a ton of concern. Even the neighbors were concerned.

One of my grade school mom friends set up a meal train. People were bringing food every day. People were asking, “What do you want? I can make this, this, or this. What do you want?” People were texting me. Neighbors were bringing food, mowing our lawn, and doing whatever we needed done. Everybody was great.

One friend even asked, “Can I come clean your house?” I declined and said, “No, you’re not cleaning my house. It’s okay.” I did let my sister clean my house a little bit, but other than that, we managed to get it done between feeling crappy and not feeling crappy. We’re making it work.

I feel bad for people who don’t have support like that because the support I have had from friends and family has been amazing. My husband has four sisters and they’re all very supportive. We had different kinds of support from different people. Everybody’s sharing what they’re good at. I have a friend who always wanted to buy. “What do I need? What do you need from the store? What can I get for you guys? What can I do?”

It was nice to know that people care and want to help. You don’t expect something like this to happen, but when you do, you want to make sure somebody’s there to help you. I have had so many people offer to bring me to chemo appointments. One time, I had a friend from college drive in from about six hours away to bring me to chemo. That was above and beyond. It was very nice.

I liked my doctor. He was experienced and a good surgeon, so I had the right fit going in.

How I Found My Care Team

It didn’t occur to me that I should be looking around for somebody different. I liked my doctor. He was experienced and a good surgeon, so I had the right fit going in. The team at his office was amazing. Everybody was great, from the physician assistant to the chemo nurses. They did everything I needed done, so I didn’t have issues with anything.

My doctor fought for my infusions. She said, “They don’t want to approve it, but I’m going to keep talking to them until they do.” I said, “Okay, if that’s what you think I need to do.” I didn’t even know what endometrial cancer was when I was diagnosed. My husband and I are not medically informed.

I have several friends who are nurses, so we ask them, “What does this mean? What do you think about this?” One of my nurse friends had breast cancer, so she knew a lot. One of my good friends had breast cancer, so we could talk about chemotherapy and all of those side effects, which was helpful.

My care team was a great group. My doctor left his practice, so I ended up finding a new oncologist. My first appointment with her was in March 2025. She was with my former oncologist and he was a great surgeon, so everything worked out. He got me on the right path and we’re continuing with everything through my new doctor and she’s great as well. She’s easy to talk to and takes time to listen, which is important because it’s easy for me to bring things up.

My oncologist had a great treatment plan and I was happy with it.

My Reaction to Finding Out I Had Endometrial Cancer

It was upsetting, but no matter what it was, I still would have gone through treatment. At least, they knew what it was. It was something that they treated before, whether they didn’t think it was curable or not, which they don’t think is curable. However, I still could go into remission sometime. I feel like they’ve done everything they can.

I already had my big cry. I’m the type of person who, when I cry, I’m done. I’m not going to keep crying. I know everybody’s different, but I’m not going to keep crying every day about it. Some days were more emotional than others.

My Treatment Plan

You need to be aware. You don’t want to push people, but you need to know your treatment plan. My oncologist had a great treatment plan and I was happy with it. I’ve had six chemo treatments, then immunotherapy infusions with chemo, and then 13 standalone immunotherapy infusions.

He said, “Even though your endometrial cancer was in more places, it was better than I thought. Even though it’s advanced in stage, I feel like it was very contained. It wasn’t in your abdomen, your liver, or your bladder, which are common places for endometrial cancer to go. You were very lucky it stayed where it was.” When they did the pelvic wash, they didn’t find any cells in the pathology, any cancer cells out and about.

There’s this small nodule on my lung that they’re watching. They’re unable to biopsy it because it’s too small. He thought that the endometrial cancer had traveled there, but there has been no change on any scans. My current oncologist doesn’t think it’s cancer.

When I met with them, we talked about the treatment plan and what we were going to do moving forward.

The Side Effects I Experienced from Treatment

The chemo side effects were not good. It was mostly fatigue. The bone pain was terrible, but there wasn’t much that I could do about it. The best thing for me was heating pads or ice packs, which sounds weird because even in the middle of winter, I’d still use ice packs.

Chemo days were hard, but I wasn’t emotional about it. We had to get through it. I’m the caretaker. I have to make sure that everybody’s okay and making the right decisions. I’ve never been sick before. I had an ovarian cyst removed 25 years ago, but that was done laparoscopically and was the only surgery I’ve ever had. I’ve never broken a bone. All this was new.

Playing a Role in Treatment Decisions as a Patient

When I met with them, we talked about the treatment plan and what we were going to do moving forward. Hopefully, this chemo would get rid of anything that might be hiding in my body.

The chemo nurse was available all the time. If I had questions, she said I could call anytime. They were always very flexible. I didn’t have a lot of weird things I needed to call about. I would wait until I had a couple of questions before calling her, but she was always very helpful, very friendly, and willing.

He said I was the right candidate for the immunotherapy. Luckily, I didn’t have many side effects.

When I would have an infusion, I would notice people who were having serious side effects. I didn’t have any reactions, so I was hoping that it worked out for them. I also noticed a lot of ladies who were older than me and I felt bad for them. It wasn’t fun at my age, but it has to be less fun when you’re older.

My oncologist sent me to the wound care specialists since I was diabetic. He wanted to make sure everything healed properly. Thankfully, I had no problems, but I was happy to have another set of eyes.

They even had a nurse come to change the dressings twice a week. We could do that at home, but I was happy for them to do it because they could tell if something didn’t look right because I wouldn’t know. We’re not medically inclined to know if something looks bad. Thankfully, my incision healed well. I didn’t have any issues. It was all smooth sailing.

Talking With My Care Team About Clinical Trials

My doctor discussed clinical trials and said, “Even though it’s not FDA-approved for endometrial cancer until June 2024, I want you to do this. It’s one of the newer treatments for endometrial cancer.”

Radiation wasn’t recommended for my stage and grade, which was fine because I felt like the treatment I had was good. He said I was the right candidate for the immunotherapy. Luckily, I didn’t have many side effects from immunotherapy. I would have fatigue on the day of and the day after, and then I’d be fine.

I have an infusion every six weeks. I’ll have a scan to see how things look. Hopefully, everything will be good. There’s a lot to say about having a good attitude, trying to still live your life, and doing what you want to do.

If my insurance is going to cover it, if the doctor’s on top of what he does, and if that’s what he recommends, then I’m all for it

I did minimal research and read all the side effects, but I don’t do that anymore. My doctor’s a gynecological oncologist. There were good statistics from the clinical trials and it worked well for some people. If my insurance is going to cover it, if the doctor’s on top of what he does, and if that’s what he recommends, then I’m all for it. Thankfully, it all worked out.

Keytruda has been approved for 18 different cancers now. Hopefully, it’s helping a lot of people feel better and be able to live their lives. The main thing is to be able to live your life, have time with your family and friends, and do what you want to do. None of us ever knows how much time we have.

How I Continue to Live My Life

I don’t want to sit in my house all day, every day. I have two part-time jobs. I like to go out and about. I’ve scaled back on volunteering, but that’s something I want to get back into. I taught English as a second language and citizenship classes before, which I enjoyed and got a lot out of. I always have something I want to do. We love to go to live music. I like to see concerts. I like to go out whenever I can, whether it’s something small and local or a big concert.

In 2024, I decided I wanted to see Green Day, so we went to Milwaukee and saw them. It was a bigger festival and we saw four bands. I thought, “Am I going to be too tired to do that? No, let’s get the tickets. Let’s just go. I’ll make it work. I can sit down if I’m tired. I’m not going to be so tired that I fall asleep.” It all worked out and we had a great time.

I’m happy to have my hair back. It was crazy curly at first. I shaved it once it started falling out a little bit.

We’ve done a couple of trips with the kids and we’re planning a couple more. I’ve always wanted to go to Alaska, so we’re going on a cruise in 2026. Some of them are bucket list items, but we like to go on vacations. If I had more money, I could vacation more.

I like going out to dinner with friends and trying new places. You have to do the things you love. I still paint my furniture. I love to decorate. I like to help somebody when they need something. I’ve scaled back on those things.

In 2024, we had a ton of graduation parties. For the first couple of parties, I wore a wig. When my hair was a little bit longer, I decided to go without a wig and it was fine. It was a whole new look. People have asked, “Are you going to dye your hair?” I’m getting used to it now. I wasn’t planning on going gray, but you do what you have to do and embrace what you have.

I’m happy to have my hair back. It was crazy curly at first. I shaved it once it started falling out a little bit. Everybody has a different opinion. Some people do cold capping. I thought I would freeze to death if I did that. It wasn’t covered by my insurance either, so I would have had to pay out of pocket.

So much of you is attached to your hair. I thought, “How does my hair look? I didn’t get my hair cut. Do I need to color my hair?” I wore a lot of knit hats. It was wintertime, so that all worked out.

Because this happened to me, I’m better about connecting with friends whom I hadn’t seen in a while.

Doing what’s important to you and spending time with people who are important to you is a big deal. It makes life better and it makes me happier. I have my animals and that’s fun too.

We still have to enjoy the time that we have. It’s always been important for me to do what I want to do. They don’t have to be expensive. You can go to a park, a free concert, or a botanical garden. They aren’t expensive activities, but they’re fun and if you like to do them, do them.

I feel like I’ve always had a positive attitude to some extent. My husband would say, “She always wants to do something.” My daughter would say, “She always has a list of stuff.” I have different lists, like things we need to do or things we need to get at the grocery store. I have a list of major projects, like painting the bathroom or repainting the kitchen cabinets. I have always wanted to do those and I’m now more motivated to keep moving forward.

I’ve always felt like there are things I need to do. My grandmother was like that. She was a sewer, a gardener, and a doer. I feel like I got a lot of that from her. She was probably a little tidier than I am, but we always used to do about that when I was a kid.

I’ve always had a positive attitude. I graduated from college and got my master’s. I got student loans, but I was still able to do it and enjoy myself while doing my best.

I have a religious side. I’m Catholic and I think that should be part of your life too. Hope is part of it. I have always hoped that something better is around the corner, whether it’s politically or environmentally, or whether it’s somebody finding a cure for something or a drug that will help a type of cancer or disease. There should always be hope that something good will happen.

I don’t know if any of that is religion-based. If I didn’t have any religion in my life, that’s how I would feel anyway. You need to be hopeful and hope that things are going to work out. Do they always work out perfectly or as you expect them to? No. Does everything happen for a reason? Probably. I don’t know. We don’t always know what that reason is, but I don’t feel like I was cursed with cancer. I don’t think that’s the way it works.

Take the things that happen in your life and turn them into good things. Because this happened to me, I’m better about connecting with friends whom I hadn’t seen in a while, like my college girlfriends. I invite them to get together. It doesn’t have to be a big, fancy trip. It can be getting together at somebody’s house and having a drink or an appetizer. Spending time with people makes your life more hopeful. Keep doing what you can do as long as you can.

If you truly think something is wrong, you’re going to have to push for yourself… Nobody’s going to advocate for yourself better than you.

What I Want Others to Know

If you feel like something’s off or not right, if you’re experiencing a symptom, even if you don’t think it’s anything, contact your doctor. Maybe it’s something, maybe it’s nothing.

Sometimes doctors will say you’re fine. If you truly think something is wrong, you’re going to have to push for yourself. A family member might, but you need to advocate for yourself. Nobody’s going to advocate for yourself better than you.

There needs to be more education about endometrial cancer. Would I have known I had it? I don’t know, but I wish I had read about it before it happened. I hope that everybody who knows me and hears someone tell them about something they’re experiencing would push them to see a doctor. Some people worry that they may seem like a hypochondriac. Those are usually people who aren’t hypochondriacs and people who are hypochondriacs don’t think they are.

Women are so busy with their lives and taking care of everybody else that they put themselves on the back burner. Take care of yourself, too. I don’t know if I would have known I had it. If I had other symptoms, maybe I would have thought about it more.

There are treatment options. Whether you’re stage 1 or stage 4, there are still treatments for you. You can do whatever you need to do to make yourself better. There are more things I could probably do to have a better lifestyle. It’s a different experience to have cancer. You don’t know what it’s like until you have it yourself.

Thank you to Karyopharm for supporting our independent patient education content. The Patient Story retains full editorial control.

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Living with Metastatic Lung Cancer: Clara’s Honest Take on Life and Treatment

Post author By Katrina Villareal
Post date August 11, 2025
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August 11, 2025

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.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

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.

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