Author: Chris Sanchez

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Chemotherapy Integrative Integrative Therapies Patient Stories Proton therapy Radiation Therapy Sarcoma Soft Tissue Sarcoma Surgery Synovial Sarcoma Treatments Tumor excision

Listening to Her Body Led McKenna Through Stage 3 Synovial Sarcoma

McKenna A. synovial sarcoma

Listening to Her Body Led McKenna Through Stage 3 Grade 3B Synovial Sarcoma

McKenna shares her experience with stage 3 grade 3B synovial sarcoma. In 2024, she received the diagnosis that would reshape her life. What started as a swollen leg and a string of minor but persistent health issues soon revealed itself to be synovial sarcoma, a rare and daunting cancer. Yet, as McKenna shares, the experience became less about fear and more about learning to take charge of her health in her own authentic way.

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

From the start, McKenna noticed that her body had been pleading for attention; she had been experiencing fatigue, insomnia, and recurring infections. When she experienced worrisome and persistent leg swelling, she underwent tests, a surgery, and finally a biopsy that confirmed that she had synovial sarcoma, a rare form of sarcoma or soft tissue or bone cancer. The initial treatment plan was aggressive: multiple rounds of chemotherapy, radiation, and a limb-saving surgery. However, after having undergone one grueling round of chemo, her intuition spoke loud and clear: her body couldn’t handle it. But instead of feeling defeated, she chose self-advocacy. She worked with her care team to pivot toward proton radiation and a highly personalized approach that combined conventional medicine with alternative and integrative therapies.

McKenna A. synovial sarcoma

Throughout her healing experience, McKenna embraced practices that nourished both her body and spirit. She dove into research, read books on radical remission, and explored complementary methods like nutritional therapy, herbs, and emotional release work. Meditation, EMDR therapy, journaling, and somatic practices helped her regulate her nervous system and process the waves of grief and uncertainty. Meanwhile, she leaned into social support, allowing friends and family to drive her to appointments, cook meals, and simply be there. These were acts of connection that deepened her sense of resilience.

McKenna found transitioning to proton radiation an empowering decision. She transformed every session by visualizing healing, with music and mindful focus creating a space of hope. Alongside her treatments, McKenna prioritized emotional healing as much as physical recovery. She cultivated gratitude, explored spirituality, and reconnected with her purpose, whether through quiet time in nature, candlelight meditations, or simply letting herself rest without guilt.

Today, McKenna celebrates being in a no-evidence-of-disease state, with two years of clean scans since her synovial sarcoma diagnosis. She credits this not to a single choice, but to a combination of medical care, self-advocacy, and the inner work of listening to her own needs. She now channels her energy into projects that inspire and support others, including a book and a podcast that share integrative approaches to cancer care, highlight diverse cultural perspectives, and empower patients to explore their options.

Watch McKenna’s video and read the transcript of her interview below. 

  • Discover how a jellyfish sting led to the discovery of a rare cancer
  • See how one round of chemo changed McKenna’s entire approach to healing
  • From despair to remission: how she reclaimed her life
  • How nature, intuition, and self-advocacy became McKenna’s survival tools
  • The life lessons she learned from facing synovial sarcoma at 24
  • Name: McKenna A.
  • Age at Diagnosis:
    • 24
  • Diagnosis:
    • Synovial Sarcoma
  • Staging:
    • Stage 3
  • Grade:
    • Grade 3B
  • Symptoms:
    • Insomnia
    • Weak immune system resulting in persistent illnesses such as UTIs and strep throat
    • Severe swelling in left leg
  • Treatments:
    • Surgery: tumor excision
    • Chemotherapy
    • Radiation therapy: proton radiation
    • Integrative therapies
McKenna A. synovial sarcoma
McKenna A. synovial sarcoma
McKenna A. synovial sarcoma
McKenna A. synovial sarcoma
McKenna A. synovial sarcoma
McKenna A. synovial sarcoma
McKenna A. synovial sarcoma
McKenna A. synovial sarcoma
McKenna A. synovial sarcoma

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

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

Transcript of McKenna’s Interview
  1. Hi, I'm McKenna
  2. How I knew something was off
  3. I went to the doctor
  4. Why I needed surgery
  5. The moment everything changed
  6. My treatment plan
  7. I did fertility preservation
  8. I took a bucket list trip before I started treatment 
  9. I decided to stop treatment
  10. I started proton radiation
  11. How I coped with my diagnosis
  12. I went into no evidence of disease
  13. How my diagnosis changed me
  14. How I spread awareness
  15. What I want others to know

Hi, I’m McKenna

I was diagnosed with synovial sarcoma exactly two years ago, when I was 24 years old.

I’m most passionate about storytelling and the environment, and learning about people and their cultures and health and all of that stuff. Psychology, all of it. I just love traveling, spending time in nature, and learning obscure things around the world.

How I knew something was off

I feel like my health was in decline for a long time. 

I was constantly on the go. I had a lot of insomnia. And there were just these chronic issues that I was doing a band-aid solution for, including chronic yeast infections, UTIs, and constant strep throat. It was like these recurring health issues were telling me that something was wrong, but I didn’t know how to fix it or what the root cause was or anything. So that went on for years. And then the only sign of a tumor in my body was when the leg did get swollen. But I feel like there were just all of these warning signs that I would have never connected. Why is my body just shutting down? Why is my immune system so low? I did have a lot of fatigue, but I attribute that to the insomnia, so it’s really hard to tell even at this point, right? 

A month before my leg got swollen, I was at Laguna Beach, swimming with the family. I got stung by a jellyfish, and I saw red stripes across my leg. The swelling went down though.

Later on, I was on this run, and then I got this shooting pain down my leg. And then it started to swell, and I thought I had sprained or broken my ankle. It got more and more swollen until it was getting harder to walk. 

I thought, “Okay, it’s probably the jellyfish,” because I did some Googling and found that it’s possible to have late-onset swelling from a jellyfish sting up to six weeks after you get stung. So I pushed that connection. But looking back, it could have been that the jellyfish sting caused my lymph nodes to swell, which then furthered the effect of the tumor.

I went to the doctor

The doctor ran a test to see if I had blood clots, and it came back negative. But the doctor said, “Well, there’s nothing else this could be. We’re just going to put you on a blood thinner.” Two weeks prior, I had gone to get an ultrasound of the area, and as the technician was putting the wand over my pelvis, she said, “These are the two biggest blood clots I’ve seen in my whole career.”

I was on blood thinners for a couple of months to see if the swelling would go down. It didn’t go down that much. And that’s when they opted to do a surgery.

Why I needed surgery

The MRI found that there was actually a mass down there that was blocking the veins from being able to transport the blood. And that’s what was causing the swelling, not blood clots. They went, “Well, we don’t know what this mass is. We’re just going to have to do a biopsy or just get it all out.” 

So they went into surgery not knowing what it was. I still remember waking up from the anesthesia and just having a panic attack, screaming and crying. The nurses loaded me up on fentanyl and the strongest painkillers, because it just hurt so much. But I think it was also the emotional build-up of not knowing what was going on in my body, and all the stress in my life. 

They extracted about 8cm of the mass, and the surgery only took a couple of hours. They brought me to my room and asked me to lie down, but also said to get up after a little while. I balked because I had just had surgery, but they said, “You need to because it helps the healing start.” I got up, and there was a rush of blood to the area, and that was really painful. But as I began to move, it did start to feel better.

The moment everything changed

It was midnight on a Saturday night when I got a message on MyChart. It said that the biopsy found that I had synovial sarcoma. 

I started looking into it, but I couldn’t talk to anyone for a couple of days. I was actually in denial. I was thinking, “Okay, this tumor is obviously cancerous because that’s what MyChart is saying. But that doesn’t mean I have cancer. It’s different.” 

I eventually met with my doctor. He told me, “Since we went into that surgery not knowing that it was cancerous, we didn’t take the margins or more outside of the tumor. And your margins were positive.” 

So that meant that the cancer was spreading. And then my lymph nodes were getting swollen and all of that stuff. That was evidence that the cancer was in there. And so the doctor told me, “You have stage 3 grade 3B synovial sarcoma.”

My treatment plan

I went, “Alright, well, what’s next? What’s the treatment plan like? Let’s go.” 

The doctor said, “It’s going to be 4 to 6 rounds of chemo. Then you’re going to do radiation and then do another surgery.” They call it a limb-saving surgery because it’s done in a way that I would still have a limb; getting amputated is apparently a common thing when you have a synovial sarcoma. 

They referred me to UC San Diego because there was an oncologist there who specialized in synovial sarcoma. She’d already worked with two dozen people with synovial sarcoma, which was actually incredible because it is so rare. So I started seeing her and immediately felt better about everything. 

She referred me to radiation. But she said, “Since you’re so young and because of the placement of the tumor, I think you should do proton radiation.” Unlike regular radiation, where the radiation goes all the way through and every organ and tissue gets blasted by radiation, proton radiation stops halfway and has an endpoint to the radiation. All the surrounding tissues and areas aren’t affected. Since the tumor was so close to my reproductive organs and some other organs too, the doctor thought that proton radiation would be better.

I did fertility preservation

At the time, I wasn’t even thinking about kids since my life was on the line. I couldn’t even think about where I wanted to be in ten years or something like that. Someone told me, though, “I know it feels like a lot right now, but if you even think there’s a chance that you’ll want kids, like you should do this now because this is your only chance to make sure you have kids, potentially.”

I went, “That’s so true.” I do want kids, but at the time, I just wasn’t sure. And I’ve always wanted to adopt. So I could do both that way. But I did go to the fertility specialist.

I took a bucket list trip before I started treatment 

It was around Christmas time. A lot of people were slow to get back to me, and some offices were already closed. So I thought I probably wasn’t going to start treatment until January. “So now that I feel like my life might be coming to an end, what do I want to do? Oh, my favorite thing ever — travel.” 

One of my best friends, Haley, was available to go to New Zealand with me. We spent almost a month there, and we borrowed my friend’s truck with a tent on top, and we traveled around the entire South Island, having these once-in-a-lifetime experiences. 

I decided to stop treatment

I was supposed to do 4 to 6 rounds, but I ended up doing only one round of chemo.

After that first round, I remember lying in bed and thinking, “There’s 0% chance that I can do this again. If anything’s going to kill me, it’s going to be this.” And my doctor did say that my body wasn’t reacting well to it. Not that anyone’s does with chemo, but mine really wasn’t. It was just destroying my whole system. My body couldn’t handle it. 

I remember telling my oncologist, “I’m so sorry, I can’t do this anymore. There’s no way.” I just had this deep-seated intuition that I needed to change up my whole plan. 

I asked, “Can we just do the proton radiation? And I’m going to try a bunch of complementary and alternative integrative methods alongside it.” 

I made the decision because, at the end of the day, it’s the patient’s choice. I added, “If I have to do that crazy surgery later, we can circle back to that, right?” 

And so while I was getting ready to start proton radiation, I was just diving into every other possible way to heal. I was watching movies, reading books, reading Reddit, and talking to all of these health coaches and alternative medicine doctors. And I remember reading about radical remission. The author of the book studied all of these people who healed overnight and tried to find out what they did to transform their healing trajectory and go from being cancerous or having cancer to being in remission. And she came up with nine things: radically changing your diet, taking control of your health, following your intuition, using herbs and supplements, releasing suppressed emotions, increasing positive emotions, embracing social support, deepening your spiritual connection, and having a strong reason for living. So after I learned about that, I went through each one and just dove into how I would apply them to my own life, and how I would change my plans to align with that. So that started a whole other path.  

I said, “Okay, now I’m going to boost my immune system. Since it’s gone to zero from the chemo, I’m going to boost it with every nutrient it can get.” And then I started making decisions. I decided that I was going to be the final decision maker, regardless of whoever else is involved, and that I would be doing things on my terms and based on what I feel is right. And that falls into the category of following intuition. Every healing modality that I tried was purely based on whether it felt like it was going to be the right thing for me.

I also looked into increasing positive emotions and really just believing that I could heal, and manifesting that I was already healed. It was like I was targeting being cancer-free in five years. Therapy was so important for me to not hold on to lasting trauma or anger or sadness, and to truly just be able to sense what was happening with me. Embracing social support was also key. It was always so hard to accept and ask for help. But this journey forced me to do that. I accepted free rides, offers to take me to appointments, to cook a meal for me, to clean whatever, because I was so fatigued at that point. And that was such a beautiful lesson because I could also put myself in someone else’s shoes. If my friend were going through this, I would want to be there for them and to help in any way I can. 

I also focused on deepening my spiritual connection and having a strong reason for living, and really evaluating why I want to live. Because that’s going to be my motivation to do all of this stuff. And so getting back to my passions, getting back to what I want to do here, like having an impact on the world and getting to spend time with the people I love and and deepening my spiritual connection. 

I started proton radiation

I also did 33 sessions of proton radiation. So I’d go in every day, every weekday, and enter this big high-tech tube. The radiation would be directed exactly where it needed to be, and I needed to stay still. They would play me whatever music I wanted. So I gave them a list of all the songs that I wanted and everything. 

The team was amazing, and my health coach at the time would tell me, “Every time you enter that machine, just focus on how much this radiation is helping you. Visualize this radiation killing all the cancer cells, and that’s going to amplify your response to it. 

I was also improving my diet. The number one rule, the first change people should make, is to eat no sugar at all because sugar can feed a lot of different cancers, and it suppresses the immune system. So that definitely helped me a lot. Also, because I was doing all these other things like ozone and I was trying these patches, my doctor was amazed that my skin was handling the treatment so well. Normally, it would have gotten completely burned.

How I coped with my diagnosis

I didn’t know what to do or how to manage my emotions. It started off with me pushing people away, and then slowly inviting them back in and relying on my social support to help me through this process. 

I cried every day for at least a year and a half. And prior to that, I rarely ever cried. What helped during that time was meditating and going to EMDR therapy, and journaling throughout the entire process. I’m glad I journaled for the book, too. I also spent so much time outside, slowing down, doing candlelight meditation, listening to music, going to the beach, and just sitting on the sand. I would do all these things to relax my nervous system. Now I go to a somatic therapist, and that’s all we focus on: regulating and relaxing my nervous system.

I went into no evidence of disease

I remember going in for my scans and the doctors saying, “There’s nothing there.” 

Wow. It was just the most reaffirming moment that everything that I did worked, of everything that people helped me through. It worked. 

It’s been two years since my initial diagnosis, and my scans are still coming back clean. So I’m excited to see out the rest of the three years and then officially be cancer-free.

How my diagnosis changed me

It transformed my life to the nth degree. I was someone who never stopped. I never took a deep breath; I was just on the go. 

Now, I’m not working, I’m living alone, and I’m solely getting to sit and feel all of these things physically and emotionally. So my life went from extremely fast-paced to extreme stillness and slowness. My body just needed to rest, and for that, I had to learn how to rest. 

It was like night and day. And even now, I have definitely slowed my life in a way that is way more aligned and sustainable.

I’m canceling plans and things like that because I have cancer, and I’m using that as my excuse. But can I just say no without giving any excuses? Can I prove to this cancer that I don’t need it anymore as an excuse? And that is really what guided the next part of my journey emotionally. How can I uphold my boundaries and truly listen to and make decisions for myself without using anything as an excuse? I don’t have the capacity for that. I don’t need an excuse anymore. I feel empowered now instead of feeling like a victim in that way.

Who am I now? It took me two years to figure that out. And now I know my identity is someone who deeply listens to themselves to show up in the best way possible. And now I am following my new passions of doing documentaries to highlight the wonderful people and things on this planet, and podcasting about my cancer experience. So I turned from being very driven and the hardest worker possible to being a creative who takes life so much slower, who is more introverted than before, and for whom rest is the number one priority. I have to sleep well for my body to heal. I have to eat well. I have to be happy. Now, my full-time job, in order to stay in remission, is to be happy. 

How I spread awareness

The main thing that I’m doing now is writing a book. So one of my friends, Shannon, said, “I want to help write your story.” That’s what we’ve been doing now. We’re showcasing everything that I integrated, everything I tried, and what other cultures around the world do. When I got diagnosed, it felt like I only had two options. And there are just so many more than that. I really want to show people all the different treatment options that they do have and how they can work together. So that’s the goal of the book. 

I also started a podcast that features experts in the cancer field and the latest innovations and treatments. We’re trying to present an unbiased showing of these different options, talk about what and who should consider them, and take a deep dive into the research around them.

What I want others to know

If you’ve just been diagnosed, take your time to figure out exactly how you want this to look, how you want to feel in it, and what you want to make your decisions from. And how to truly take your health journey into your own hands. 

There is that inherent rush and pressure from everyone around you. Can you just clear your head enough and come into silence to figure out what you want to do? Because you are the priority now, and you need to prioritize your health. 

It’s so important to advocate for yourself. You might think everyone else can access all that data in your chart, or that they’re going to remember what kind of medications you have or what kind of port you have, and all of that stuff, but they have dozens, if not hundreds, of patients to think about. And so you need to keep track of your own stuff. No one’s going to do it for you.

If you’re not getting the scans on time, or if the doctors tell you, “Oh, we don’t have an open slot for months,” whatever it is. Call every day, keep calling, be that annoying person. You can always get a second opinion. And that is so important too. You are empowered to get a second opinion from another doctor.

McKenna A. synovial sarcoma
Thank you for sharing your story, McKenna!

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Categories
Cancers Chemotherapy Immunotherapy Metastatic Metastatic Patient Stories Stomach Cancer Treatments

“No One Should Face Stomach Cancer Alone”: Andy’s Stage 4 Stomach Cancer Story

Andy G. stomach cancer

“No One Should Face Stomach Cancer Alone”: Andy’s Stage 4 Stomach Cancer Story

Andy was diagnosed with stage 4 stomach cancer in August 2021, and doctors gave him only six to nine months to live. Nearly five years later, he’s still here. His experience highlights the importance of mental health, self-advocacy, and embracing survivorship with hope and community support.

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

Andy ignored symptoms like severe fatigue, exhaustion, and shortness of breath for nearly two years. By the time he saw a doctor, tests revealed anemia and a perforated ulcer, which led to his stomach cancer diagnosis. Hearing the words “you have cancer” left him numb and disoriented, but connecting with care teams gave him clarity. He learned to advocate for himself, seeking second opinions and asking the hard questions.

Andy G. stomach cancer

The first six months after Andy found out that he had cancer were the hardest, physically and emotionally. He underwent chemotherapy and immunotherapy. Chemotherapy was brutal and brought side effects like neuropathy, extreme fatigue, and temporary hair loss. He leaned heavily on his wife, Simone, and his online community for support. 

Andy found his transition to immunotherapy life-changing. Side effects were minimal, and his scans started to show progress. Those signs of improvement fueled his hope and encouraged him to keep moving forward.

Survivorship for Andy isn’t just about the absence of disease; it’s about living intentionally and supporting others. He joined advocacy groups like Hope for Stomach Cancer and Man Up to Cancer, finding camaraderie and a safe space to share fears and victories. He participates in retreats, meet-ups, and awareness events, including leading a walkathon for the Maine General Day of Hope. Through these efforts, he empowers others to seek help, connect with community, and focus on small daily wins.

Andy firmly believes that no one should face stomach cancer alone. His story reminds us that hope often comes from the people who walk beside us and encourage us to find purpose and joy every day. Watch his video and read through his interview transcript to find out more about his story.

  • He was given 6–9 months to live, but five years afterwards, he’s still here
  • Chemotherapy nearly broke Andy, but immunotherapy gave him hope. Find out why!
  • He leveraged his experience into a mission to help others
  • The bell-ringing moment Andy will never forget
  • Finding strength, support, and small yet meaningful victories in the darkest times
  • Name: Andy G.
  • Diagnosis:
    • Stomach Cancer
  • Age at Diagnosis:
    • 42
  • Staging:
    • Stage 4
  • Symptoms:
    • Stomach pain
    • Back pain
    • Chest pain
    • Extreme exhaustion
    • Shortness of breath after short walks
  • Treatments:
    • Chemotherapy
    • Immunotherapy
Andy G. stomach cancer
Andy G. stomach cancer
Andy G. stomach cancer
Andy G. stomach cancer
Andy G. stomach cancer
Andy G. stomach cancer
Andy G. stomach cancer

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

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

Transcript of Andy’s Interview
  1. My name is Andy
  2. How I knew something was off
  3. When I heard the words “you have cancer”
  4. How I found my care team
  5. I was not eligible for surgery
  6. I had side effects from chemotherapy
  7. How my diagnosis affected my everyday life
  8. The hardest part of my diagnosis
  9. I went into remission
  10. I look at life differently now
  11. My support system
  12. How I spread awareness
  13. I go on cancer retreats
  14. I am monitored often
  15. What survivorship looks like to me
  16. What I want others to know

My name is Andy

On 20 20th August 2020, I was diagnosed with stage 4 stomach cancer. It had spread to my liver, my lymph nodes, and the surface of my bones. So it was a pretty dire situation. I was given 6 to 9 months to live, and surprisingly, I am still here almost five years later. Wow.

I’m actually a YouTube vlogger, so I like to travel and I like to vlog my travels. That’s basically where my interest lies. Additionally, I am a cook by trade, so I enjoy cooking at home.

How I knew something was off

In 2019, about two years before my diagnosis, I was on vacation in South Beach, Miami, right in the middle of COVID. On that vacation, I started to feel very tired. I was getting very weak and a little out of breath after walking short distances. I was also having some nausea and stomach and bowel issues, some pretty severe heartburn, which I’ve always kind of had throughout my life, off and on. So I wasn’t really concerned with it then. But the main red flag for me at that point was the fatigue. 

My wife and I decided to go see a doctor. But because of the pandemic, it was very hard to get in to see anybody at first. Once I finally did see a doctor, they mostly looked at my heart. I got on some medications for that, and unfortunately, they didn’t work. And things started getting worse. 

I was starting to fall asleep at work. I was working in the restaurant industry, standing on my feet for around 15 hours a day, and almost falling asleep while standing up. That obviously wasn’t right. 

So down the road, I had a few more tests, including some blood tests and an endoscopy. They revealed that I had anemia as well as a large ulcer in my stomach that had perforated the stomach walls. And that’s pretty much how I came to find out that I had stage 4 cancer.

I kind of ignored the symptoms for about two years. So I think if I hadn’t ignored those or if they had been properly diagnosed, then I probably wouldn’t have ended up stage 4. But unfortunately, I think it progressed quite rapidly during the course of those two years.

When I heard the words “you have cancer”

The feelings that I had will stick with me forever. I remember that very first phone call, during which they told me that I had cancer and that it may be stage 4. They weren’t sure it was stage 4, but they definitely knew it was cancer. 

I remember looking at the mirror and not really recognizing myself. It was almost an out-of-body experience. I was completely numb. I mean, there were people there and they were talking and I was talking back, but it just didn’t feel like I was in the moment and even present. It just felt like my body was there, but everything else was somewhere else.

How I found my care team

I was diagnosed in Maine at the Harold Alfond Center for Cancer Care. I got a second opinion at Dana-Farber in Boston, one of the well-known cancer centers in the United States. And they agreed with my first doctor back in Maine. So that made me feel good. Of course, in one respect, it didn’t, because they agreed that I basically had just 6 to 9 months to live, you know? I was kind of hoping for a better second opinion. I did not get it. So that reality hit very hard as well, knowing that the first doctor was correct. 

I had my first treatment in Boston, and I actually blacked out for about a week after that treatment, because my body just was not used to having that many foreign substances in it all at once. And I still don’t remember it to this day. So that was my first treatment. 

My second treatment was in Maine, at Yankton Fairview Hospital, and that went much better than the first one. And I continued to get my treatments there throughout my cancer journey. So more than 150 chemo treatments over about two years total.

I was not eligible for surgery

I was not a candidate for surgery, unfortunately, because the cancer had ravaged so many other areas of my body that at that point, the doctors really didn’t think it was going to matter much. And they said, the less stress on the body, the more beneficial it might be for me. So we decided not to do surgery at all. I still have my entire stomach, which is great now. It was, however, kind of depressing to know that surgery was not an option and that it wouldn’t help me. 

So my treatment plan was composed of a form of chemotherapy and then immunotherapy in conjunction with that. Basically, I was told that it was going to make me more comfortable, more of palliative care. It wasn’t going to heal me. But it might prolong my life beyond 6 to 9 months if I were lucky.

I did chemo and immunotherapy for about a year and a half. Unfortunately, the side effects of the chemotherapy were so extreme with me that we discontinued it after a while. I just went straight into immunotherapy, which was much better for me physically. I had virtually no side effects at all from the immunotherapy. So once the chemo was out of my system, I felt ten times better.

I had side effects from chemotherapy

The major one for me was neuropathy. And I think that, unfortunately, it is a major issue for a lot of chemo patients. I had severe neuropathy in my hands and feet. It got to the point that I wasn’t even able to dress myself. My wife had to help me dress. I couldn’t button my shirt or pants or tie my shoes. She helped me eat and drink; even a simple water bottle hurt my hands too much. 

I got lucky. I did not have too much nausea. I had a little bit here and there. But the medication primarily took care of that. I did lose my hair for probably 6 or 9 months during treatment. 

I had extreme fatigue as well. I did a lot of sleeping.

How my diagnosis affected my everyday life

The first six months were really the worst. I was basically bedridden for about six months. I was able to go to the bathroom with my wife’s help and to the car to get to my treatments. But I was in a wheelchair for quite a bit of it. 

My wife would help me in the shower and things like that. She learned to be a really good cook. Cancer took pretty much my entire livelihood, unfortunately. One thing I was still able to do was make a few vlogs for my YouTube channel, because I could just edit those on my laptop while sitting in my chair. And that was actually a great distraction. It gave me something to do that I actually enjoyed and took a little bit of my depression away. 

The hardest part of my diagnosis

Beyond the first initial diagnosis and the shock of that, I would definitely say the chemo was the hardest thing. It really tore my insides up. Physically, I wasn’t doing well. I’d heard before I even got cancer that quite often, people will say that the chemo treatments themselves are actually worse than the cancer. I was kind of going into it naively and hoping they were kidding, and they weren’t. It was definitely pretty vicious on my body. I think a lot of the pain that I was experiencing was actually from the chemo and not from the cancer. In the long run, it worked out. But yeah, it’s very harsh. 

And that’s why I advocate so strongly today. To keep trying to raise awareness and raise money so they can find different treatments that aren’t so physically exhausting and things like that. I think immunotherapy is going to be great for a lot of people. The side effects are so much less compared to chemotherapy. There’s been some great successes with it. 

I’m very happy that I was a candidate for immunotherapy. I think it worked miracles for me.

I went into remission

The first scan, even after just the first three months, showed a little bit of shrinkage. And I think that’s what kept me motivated to keep on going. Every three months, it would show a little bit less cancer. And slowly it started to disappear outright. 

I think that after seeing those results, it just gave me that motivation and that hope that in the first three months, I didn’t have. I had absolutely no hope whatsoever. I was pretty depressed. I wasn’t sure what I was going to do, except, well, die. 

Once I saw that first scan, it gave me a little bit of a boost. I could persevere after that, basically.

I actually didn’t find out until I looked at it and saw my scans. And then I read the doctor’s report before the doctor had a chance to tell me they had an online portal for the hospital I was at. So I was able to go on that online portal and look at the results. And the results showed no evidence of disease. I’m not sure if it was me just being naive or just not believing it. 

But I remember asking my wife, “Does no evidence of disease mean what I think it does?” And chuckled and smiled and started tearing up a little bit herself and said, “Yeah, I think that means they don’t see any cancer.” 

And so about 2 days later, I met with the doctor, my oncologist, and I remember her walking into the office, and she had a big smile on her face, and she was all ready to give me this great news that I didn’t know anything about. And I looked at her and I smiled back and I went, “Does that mean what I think it means? She goes, “I was gonna tell you. How dare you cheat?” I stole her thunder there a little bit. But yeah, that’s how I found out. 

And I remember that she hadn’t told the nurses yet, so she asked my permission to tell the nurses, and she went out. She told all the nurses, and the oncology unit applauded. And the nurses cried, and everybody just gave me hugs, and a couple of them said that they never expected that. And obviously, I never expected it either. And it was just a big weight off my shoulders, you know, just a huge relief. 

It was almost the same feeling as when I got my first initial diagnosis. It was almost an out-of-body experience. It was a good one this time. But it was that same thing. I just felt kind of numb inside, not really believing it. 

It was actually almost two years exactly from the day of my diagnosis. So I was diagnosed in August of 2021, and in August of 2023, I was declared NED. Wow. I just find it really ironic that it was literally within probably a week of my diagnosis that I got the all-clear. 

Yeah, it took me about another year of immunotherapy just to make sure they got it all. But in 2024, I rang the bell, and I made sure that my oncology team was there with me, and my wife was there with me, and we all rang it and cried together and had more hugs. 

Definitely another experience that I’ll never forget.

I look at life differently now

I try to be a lot more positive than I used to be. I try my best to make positive strides every chance I get. And I’m in a couple of different advocacy groups, which I think helps me a lot with that. 

Hope for Stomach Cancer is a big one. They do a lot of work on Capitol Hill in Washington, D.C., advocating for others and on a lot of online forums and things like that. Another one that I recently joined, probably about nine months ago, is Man Up to Cancer. And I’m very glad I found them. That is exclusively a men’s cancer group. It has about 3,000 members, most of them in the United States. But we do have some international members as well. Their motto is, “No man should go through cancer alone.” That really resonates with me, because you do feel very, very alone when you have cancer. Even though you’re surrounded by people, it’s just that people don’t understand cancer unless they’ve had it. They don’t understand the physical feelings. They don’t understand the mental aspect of it. And in groups like Hope for Stomach Cancer and Man Up to Cancer, that’s where you have people who truly understand you. And that’s where you truly have that fellowship and that journey and those people who will walk with you.

You must have people to walk with you, support you, and give you strength. As I said earlier, I couldn’t find a whole lot of hope in the first six months. You don’t find hope when you look at a scan and you’re lit up like a Christmas tree. You don’t find hope when your wife is crying because of the news that you only have six months to live. You don’t find hope when you’re sitting in a chemo chair and you’re getting fluids pumped into you for eight hours, and there are people beside you that you know are doing the same thing. 

It’s hard to find hope in any of those situations. But when you have a group of people around you who are cheering you on and who are having that strength for you because they know you don’t. That makes a world of difference. 

Nobody should have to walk alone. By having that support system and having people who can walk with you, that’s truly when miracles can happen. And I think that’s a big part of why I’m still here today. I had those people fighting for me when I couldn’t. 

And that’s what I’m trying to do now. Fight for other people the way that people fought for me.

My support system

My wife Simone took care of everything. She actually works in the medical field herself. So that was very beneficial to me because she understood a lot of the medical terms that I didn’t. When I didn’t have the energy to research different things, she would do that for me. I remember her sitting beside me on the couch and researching on the computer while I was in agony from the side effects of my treatment. She dealt with insurance agents. And she cooked for me, so that was a huge help. She was home with me for the first 90 days after my diagnosis. She took a leave from work so she could be with me. And she also did the stuff that nobody wants to talk about. She wheeled me around in a wheelchair, which is very humbling. She drove me around for two years when I couldn’t drive because I was on so many painkillers and drugs for pain management. So I think Simone was my main advocate. 

But a lot of the YouTube community helped me out as well. I have a lot of YouTube friends. When I first got diagnosed, they held a fundraiser for me. It was a 48-hour fundraiser, and there were, I think, ten different YouTube channels involved. All ten channels went live for an hour, and they asked for donations to my GoFundMe page. Wow. And they did specific things that they knew I would enjoy. Like a couple of them did cooking segments, things like that.And they were able to earn almost $20,000 in a matter of two days for me.

How I spread awareness

When I was really deep down in the trenches of chemo, the only vlogs I was able to do were about cancer. And I think those kinds of things helped me with my own emotions because I was able to get out and talk about it. 

I did a couple of live YouTube shows where people would just ask me questions and I’d answer them as best as I could.

I go on cancer retreats

Man Up to Cancer is a big advocacy group. We do monthly meetups, usually at a restaurant, a bar, a pub, or similar places. Once a year, we have a large meetup in the wilderness of Pennsylvania in the Poconos. And it’s basically three days of just men getting together, hanging out at the campfire, and chatting about their experiences and just enjoying life. Hot air balloons, archery, axe-throwing, zip-lining, obviously hiking because you’re in the woods, and so on. We call it the Gathering of Wolves because we consider ourselves a wolf pack, and we got tattoos. I just got myself a brand new tattoo, and that’s the wolf pack logo right there for the cancer group. 

There are a couple of conferences every year. One just concluded in Los Angeles last week. They go to Washington, D.C. every spring, where they have a three-day conference and an advocacy day on Capitol Hill. There, you’re able to talk to some of the senators and congressmen, and advocate for stomach cancer.

I am monitored often

I get scans now every six months. After you’ve been given that all-clear, a lot of people just think that life returns to normal. Unfortunately, there is no normal after a cancer diagnosis. There’s no going back to what you were before that. 

It’s like every ache and pain I have, whether it originates from my stomach or my ear or my head or my finger, I always think, “What is that? Is that cancer?” In between those scans, every time you have any kind of illness, you kind of associate it with cancer again. It’s just kind of the same mental battle. Scanxiety definitely is a real thing. I’m lucky enough now that I’m getting where I’m getting my scans. 

My whole theory is to just try not to focus on it. Try to focus on the positives every day. Another mantra of the cancer group is to live your best day possible. Just be able to get up and go to the bathroom by myself without any help. If I could do that, that would be an accomplishment. That was the best thing I did all day. And nowadays, my best day possible is helping others. If I can, if I can talk to another cancer patient online or on Facebook Messenger and help them somehow, that gives me some fulfillment. And that makes it a good day for me.

What survivorship looks like to me

I’m technically retired from real work. As soon as I got my diagnosis, I unfortunately had to resign from my job simply because of the side effects, the chemo treatments, and the schedule. And I decided after I had the all-clear that I didn’t really care to go back to work. I was lucky enough to survive, and I didn’t want to waste the rest of my life. 

Being in a job for 40 hours a week, I wanted to enjoy my life as much as I could. Because that’s another reality with cancer, you always know that it could come back at any moment. So you want to live every single day that you have as best you can and to the fullest. 

The advocacy work that I’m now doing gives me the fulfillment that I need in my life. It’s the Maine General Day of Hope on October 4th. I’m the grand marshal for that. I’ll be leading a walkathon. It’s about a two-mile walk. It’s about 7,000 people, cancer patients, caregivers, and survivors. I’ll be doing a little talk at that as well. 

What I want others to know

Don’t give up. And find hope.

I really didn’t have any hope those first 3 or 4 months of my treatments. And I had to search really deep down inside to get that hope. I had lots of anger and depression. It’s very easy to become depressed and be angry. It’s not so easy to find hope. But I found it in those around me. 

And so that brings me to my next thing, which would be: don’t go it alone. Join these groups. There are all kinds of groups on social media nowadays that can help you out. You don’t have to be alone in your journey. There are always people around you who will care for you and help you. Walk with somebody else and find your strength. Find a reason to live. Make every day your best day possible. And just keep on going. 

Set yourself small goals. Don’t give up on life. Find a reason to live.

Andy G. stomach cancer
Thank you for sharing your story, Andy!

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More Stomach Cancer Stories

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Jeff S., Stomach Cancer, Stage 4



Symptoms: None; found during the evaluation process for kidney donation
Treatments: Surgery (partial gastrectomy & nephrectomy), chemotherapy (oxaliplatin & capecitabine), radiation
...
Lauren C. feature profile

Lauren C., Stomach Cancer, Stage 1, CDH1+



Symptoms: Irregular bowel movement (stomach bile), extreme pain eating certain foods or drinking alcohol

Treatment: Total gastrectomy (surgery to remove whole stomach)
...
Graham L. stomach cancer

Graham L., Stomach Cancer (Diffuse Gastric Adenocarcinoma with Signet Ring Cell Features, Poorly Differentiated), Stage T1bN0



Symptoms: None; a stomach polyp discovered during his annual screening tested positive for cancer

Treatments: Surgeries (total gastrectomy, lymphadenectomy)
...
Mary Jane B. stage 4 stomach cancer

Mary Jane B., Stomach Cancer, Stage 4



Symptoms: Fatigue, night sweats, sharp back pain, bloody stool, unexplained weight gain, nausea and vomiting, chest pain, shortness of breath, severe anemia, loss of appetite and early satiety, sudden and intermittent dry cough, persistent stomachache, distended abdomen, frequent headache, forgetfulness
Treatments: Chemotherapy, targeted therapy (anti-HER2 receptor monoclonal antibody), immunotherapy (PD-1 inhibitor)
...

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



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

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Uroosa K.

Uroosa K., Stomach Cancer, Stage 4



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Treatments: Surgery (Whipple procedure), chemotherapy, immunotherapy

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Categories
Brain tumor resection Brain Tumors Chemotherapy Oligodendroglioma Patient Stories Radiation Therapy Rare Surgery Treatments

Kelsea Finds Purpose After a Grade 3 Brain Cancer (Oligodendroglioma) Diagnosis

Kelsea K. brain cancer

Kelsea Finds Purpose After a Grade 3 Brain Cancer (Oligodendroglioma) Diagnosis

Kelsea’s experience with grade 3 oligodendroglioma, a rare type of brain cancer, reframed her life’s priorities while highlighting her determination to live fully with cancer. Diagnosed in 2018, she was a stay-at-home mom to a toddler when she first noticed unsettling symptoms. Surprisingly, the common headaches she thought were inherited turned out to mask something life-changing.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Her initial signs were subtle: waking up disoriented, memory gaps, and routine headaches. It wasn’t until a particularly worrying episode that Kelsea’s father-in-law, a physician, insisted she see a neurologist. Normal EEG results offered temporary comfort, but an MRI quickly revealed a mass in her brain. Despite reassurances from her neurosurgeon that brain cancer was unlikely, the pathology soon confirmed that she had grade 3 oligodendroglioma. (Editor’s Note: Oligodendroglioma is a tumor in the central nervous system, which means that it affects the brain or spinal cord. It starts in glial cells, the support cells of the nervous system.)

Kelsea K. brain cancer

Kelsea faced major brain surgery and confronted the possibility of lasting changes to her sense of self. The operation successfully removed 99% of her tumor, but aggressive follow-up was necessary. Her team at the Huntsman Cancer Institute coordinated chemotherapy and concurrent radiation, navigating fertility preservation concerns along the way. With the help of her care team, Kelsea balanced treatment, family, and fear with remarkable strength.

Even after treatment, the challenge wasn’t over. Recurrence worries and “scanxiety” became constant companions, a reality for many with brain tumors that don’t have a cure. Regular MRIs and the emotional weight of not knowing what tomorrow brings are now part of her story.

Despite this, Kelsea remains grateful for her two children, stays active, and intentionally chooses hope whenever possible. She shares her story to encourage others to find joy and gratitude in the small moments. Her resilience is both a message of hope and an invitation to live with authenticity, regardless of the diagnosis.

Watch Kelsea’s video and browse the transcript of her interview. You’ll learn more about:

  • How early symptoms like headaches and memory lapses can signal serious health conditions
  • Why finding purpose and meaning in daily life matters so much in establishing “normalcy” in the face of a cancer diagnosis
  • How supportive care teams make a difference in the face of complicated choices due to aggressive brain cancer
  • Resilience is not about perfection, but about choosing gratitude on even the hardest days
  • A universal truth: Learning to appreciate small joys is vital for anyone facing chronic illness
  • Name: Kelsea K.
  • Diagnosis:
    • Brain Cancer (Oligodendroglioma)
  • Age at Diagnosis:
    • 26
  • Grade:
    • Grade 3
  • Symptoms:
    • Persistent headaches
    • Memory gaps
    • Disorientation
    • Visual auras
  • Treatments:
    • Surgery: brain tumor resection
    • Chemotherapy
    • Radiation therapy
Kelsea K. brain cancer
Kelsea K. brain cancer
Kelsea K. brain cancer
Kelsea K. brain cancer
Kelsea K. brain cancer
Kelsea K. brain cancer
Kelsea K. brain cancer
Kelsea K. brain cancer

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

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

Transcript of Kelsea’s Interview
  1. My name is Kelsea
  2. When I first noticed something was wrong
  3. I’ve always had headaches
  4. My path to diagnosis
  5. Preparing for brain surgery
  6. The moment everything changed
  7. My treatment options and fertility fears
  8. The plan moving forward
  9. The scanxiety struggle
  10. I’m still trying to find a sense of normalcy
  11. What hope means to me

My name is Kelsea

I was diagnosed in 2018 with a grade 3 oligodendroglioma,
which is brain cancer, and I live in Arizona. I’ve been a stay-at-home mom since my diagnosis. I was diagnosed when my son was about 20 months old. Now, I have two children, as I had my daughter in December 2020. They keep me very busy. I enjoy calligraphy, although it’s challenging because my hands aren’t as steady. I also like audiobooks and exercising.

When I first noticed something was wrong

I didn’t really realize anything was wrong at first. One day, my husband was camping, and I woke up completely disoriented. I remembered I had a son and that I lived in Las Vegas, but I couldn’t remember the day before. I later found out I had driven to my
husband’s campsite but had no memory of it. Thankfully, my father-in-law is a doctor, and he suggested I see a neurologist because of my symptoms.

I’ve always had headaches

I always had headaches, just like my dad. I thought it was genetic — nothing to worry about. Occasionally, I would see auras or squiggly lines as a teenager, but I never thought it could mean something serious.

My path to diagnosis

I visited a neurologist, who did basic tests and thought I seemed healthy, but scheduled an EEG and MRI. My EEG was normal, but the MRI revealed a mass on my brain. They referred me to oncology and neurosurgery. The neurosurgeon told me, ‘I’ll bet you a million bucks this is not cancer,’ because I was young and otherwise healthy. Surgery was scheduled for May 1, 2018.

Preparing for brain surgery

The night before surgery was heartbreaking. It felt like I was saying goodbye to my son, not knowing if I would survive. Brain surgery isn’t like an arm or leg operation; it changes everything. They warned me they might need to remove more of my brain and that I could be a different person afterward.

The moment everything changed

In the ICU after surgery, I was told they removed 99% of the tumor, but early tests suggested it was a higher grade than expected. They sent my tumor sample to UCLA for further analysis. The waiting was agonizing. Eventually, I sought a second opinion at
Huntsman Cancer Institute in Salt Lake City, which became our main point of contact. The diagnosis was confirmed: grade 3 oligodendroglioma.

My treatment options and fertility fears

Because my tumor was aggressive, there weren’t many options. My care team in Salt Lake City made the plan, and I was told, “You don’t really have a choice if you want to live.’ I took oral chemotherapy (Temodar) and underwent concurrent radiation over about 30 days. They advised egg preservation may not be possible before treatment, so I received a Depo-Provera shot to try to preserve fertility. Many women are still able to have children after this treatment, and I’m grateful I have my two.

The plan moving forward

I completed six additional cycles of chemotherapy. For monitoring, I started MRIs every three months, then every six months, and now yearly. My tumor responded well to chemo and radiation.

The scanxiety struggle

Scanxiety is real. Brain cancer doesn’t have a cure, so it’s a matter of when, not if. I’ll need yearly MRIs for life. When I was closer post-treatment, I felt more likely it would recur. It’s emotionally crippling to wait for scan results, but over time, it gets a little easier.

I’m still trying to find a sense of normalcy

My kids keep me so busy, I barely have time to think about the bad. I find purpose in sharing my story and helping others understand this experience. Staying active helps my mental health, and I’m more intentional about how I spend my time and interact with loved ones.

What hope means to me

Hope isn’t always easy. Some days I have none; on other days, I have a lot. It’s about balancing good and bad days and eventually finding peace. If there’s one message I have for others, it’s this: live like you might not have another day. Find gratitude in little things. Be the person you want to be.

Thank you for sharing your story, Kelsea!

Inspired by Kelsea's story?

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More Brain Cancer Stories

Cody L. feature profile

Newlyweds Navigate Cancer: Cody’s High-Grade Astrocytoma Story

Nicholas Has Terminal Grade 4 Brain Cancer —But He’s Not Giving Up Hope

Kyle and Rachel’s Grade 4 Brain Cancer Story

Kelsey’s Grade 3 Brain Cancer Story

Amanda’s Grade 4 Brain Cancer Story

Melissa’s Rare Brain Tumor Story

Categories
Chemotherapy Colorectal Epidermal growth factor receptor (EGFR) inhibitor Gene modification inhibitor Metastatic Monoclonal antibody drug Patient Stories Treatments

Minor Pain, Major Discovery: Pio’s Stage 4 Colorectal Cancer Story

Pio M. colorectal cancer

Minor Pain, Major Discovery: Pio’s Stage 4 Colorectal Cancer Story

Pio’s story is a reminder of how life can shift in the blink of an eye, even for someone who’s lived his days in sync with the ocean. Originally from Italy but a longtime Hawaii waterman, Pio spent decades windsurfing, surfing, and designing gear for the waves. He felt alive and in tune with nature, until a faint twinge near his liver led to a diagnosis that would change everything: stage 4 colorectal cancer.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Pio first noticed a minor pain, which he rated a “2 out of 10” and brushed off. But after a routine blood test in January revealed troubling markers, scans showed spots on his liver and lungs. Hearing the words “colon cancer” and “peritoneal carcinomatosis” was like stepping into another reality. Still, Pio’s mindset immediately leaned toward action and understanding. He and his wife Gretchen reached out to doctors across continents, eventually relocating to the Midwest with their daughter Allegra, so he could access specialized care.

Pio M. colorectal cancer

Transitioning from long days in the Hawaiian surf to hospital visits in Oklahoma City and MD Anderson was a radical adjustment for Pio and his family. But his discipline and focus never wavered. Even as he underwent long chemotherapy sessions, sometimes walking out with a pump for two extra days, he leaned on his active lifestyle, nutrition, and mental strength. He fasted on chemo days, followed a mindful diet, and kept moving, believing that his body and brain together could support the treatment.

When scans in May 2025 showed tumor growth despite months of chemotherapy, it was discouraging. But Pio learned he carried the aggressive BRAF V600E mutation, prompting a targeted therapy with inhibitors. By July 2025, he was stunned to hear that the new treatment was working, a glimpse of hope that reaffirmed his belief in taking things one day at a time.

Through it all, Pio speaks with humility, love, and gratitude for his wife’s constant strength, his daughter’s resilience, and the community support stretching from Hawaii to Europe. He encourages others facing colorectal cancer to seek multiple medical opinions, stay actively involved in their care, and trust in their own inner power. He embraces the idea that mental discipline, connection, and self-belief are just as vital as medical treatment.

Pio now looks ahead with patience and purpose. His story reminds us that even in the face of something devastating, we can find ways to reconnect with ourselves and our loved ones, to learn, and to support others walking a similar path.

Watch Pio’s video and scroll down for his interview transcript for more about:

  • How minor discomfort led to a life-changing diagnosis
  • Why mindset and discipline became Pio’s greatest tools
  • How one family faced colorectal cancer with courage and care
  • The moment a routine check-up revealed something life-altering
  • From the ocean to oncology: Pio’s empowering story of hope
  • Name: Pio M.
  • Diagnosis:
    • Colorectal Cancer and Rare Form of Extensive Peritoneal Carcinomatosis
  • Staging:
    • Stage 4
  • Mutation:
    • BRAF V600E
  • Symptom:
    • Minor pain in liver area
  • Treatments:
    • Chemotherapy
    • Monoclonal antibody medicine
    • EGFR inhibitor
Pio M. colorectal cancer
Pio M. colorectal cancer
Pio M. colorectal cancer
Pio M. colorectal cancer
Pio M. colorectal cancer
Pio M. colorectal cancer
Pio M. colorectal cancer
Pio M. colorectal cancer
Pio M. colorectal cancer

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

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

Transcript of Pio’s Interview
  1. My name is Pio
  2. When I first noticed something was wrong
  3. The moment everything changed
  4. We left Hawaii to find the right care team
  5. What my treatment has looked like
  6. I found out that I have an aggressive mutation
  7. What cancer has shown me
  8. Adjusting to life on the mainland
  9. Why I feel like multiple opinions are important
  10. What I want people to know

My name is Pio

My name is Pio. I’m originally from Italy. I’ve lived in Hawaii for 35 years. 

I’m a surfer, windsurfer, and waterman. I’ve dedicated my life to water sports. I have my own company that designs surfing and windsurfing accessories. 

I was diagnosed with an adenocarcinoma in the colon that basically moved to the peritoneum. So I have peritoneal carcinomatosis and little lesions in the liver in the subcapsular region of the liver, and two small nodules in my left lung.

When I first noticed something was wrong

Two months before the diagnosis, I was training, surfing, in the water, swimming, windsurfing, and so on. I wasn’t feeling 100% for some reason, but I didn’t think it was too serious. I kept up with my surfing and all, I was healthy as far as I knew and I also tried to follow certain diets. And so I didn’t really think about it, honestly. I was like, “Whatever.” 

I had this very small pain here, right on my liver. On a scale from 0 to 10, let’s say it was a 2. So I kept doing what I was doing, just working through the pain, it wasn’t a major pain and I didn’t pay attention to it. 

On the 7th of January, I went to do my yearly blood test. And I asked the doctors, “Hey, since I’m here, do you guys want to check this little pain that I have?” They’re like, “Yeah, no problem.” When I went in, the doctor said, “Oh, you don’t have any long medical history. You don’t take medicines. You only have a little bit of data here. I don’t like this pain you have. I want you to do more tests.”

So I took another blood test right after, and it took some different markers. One was the D-dimer. And it basically looks for blood clots. The doctor said, “You might have a blood clot. Let’s do a chest scan, see how you feel.” I did the CT scan, came back, and I was waiting for him. And he comes in and says, “Well, the good news is you don’t have a blood clot. The bad news is I see these couple of black spots that I don’t like.” I froze, and didn’t want to say the word, and I didn’t want him to say the word either. He said,
“I’m going to have to do another scan of your pelvis.” And I went, “Is it that cancer?” And he was like, “I can’t tell you until we do the other scan.”

So I went in again, and meanwhile I called my wife and I was like, “Something happened.” We were supposed to leave three days later because she had a European tour. So I was going to visit my mom and my family. And I was going to go catch her when I could. And so we’re ready to go. And so Gretchen came and found out. She was like, “What’s happening?” It’s a shock. 

The moment everything changed

I went to do the other scan, and when I came back, the doctor came in, and his face was the classic face, looking at the ground. He went, “You have colon cancer and you have a peritoneal carcinomatosis.” I understand colon cancer, but peritoneal carcinomatosis? “You have this in the subcapsular region of the liver.” So I’m like, oh my God. 

From there, he told me he expedited me to Honolulu to do a colonoscopy right away because they couldn’t do a colonoscopy in Norway. So I flew to Honolulu on Friday, the first, and we came back home on the seventh, I think it was Tuesday or Wednesday. And imagine the first two days. I was like, “What do we do? It’s a very hardcore type of feeling. It’s very hard to explain. It comes from the core. I started saying, “Okay, I’m healthy, I’m doing this, I’m doing that. Why is this happening to me?”

When I was having the conversation with the doctor, he was looking at me and was like, “You don’t feel anything?” I’m like, “No, I went for a run yesterday. I was in the water all last week.” “Well, it’s kind of advanced, and I’m going to send you to Honolulu so we know exactly what it is.”

So when we came back home, it was like just a couple of days of complete shock. We didn’t know how to tell our daughter.

We left Hawaii to find the right care team

I started to make phone calls, and my first idea was to call Italy. I know doctors and friends who could tell me what to do. And as soon as I said the name “peritoneal carcinomatosis,” they were like, “Oops.” It’s a little rare, especially in men. And heart conditions. It’s extensive carcinomatosis, and we need to get this aggressively treated now. I asked if I needed to go to Italy and was told, “No, you have the best centers in the United States. Go call these people and figure things out.”

So I talked to my wife, and we waited for the hospital in Maui to tell me something. I called, but they didn’t call me back. So my wife made some phone calls, I made some phone calls, and we basically got accepted into Oklahoma City through some friends. So in eight days, I packed my bag and boom, I left. 

The doctor in Oklahoma City talked to me about that and the options that I had. And she sent me straight to a PD and a PET scan. After a couple of days, she went, “These things are growing. Luckily, you don’t have it anywhere else. Your bones are fine, your brain is fine, everything is fine. But I want to start treatment with you right away.”

I left Hawaii nine months ago and haven’t yet returned. Right now, I’m based in the Midwest. And then after a couple of weeks, I got accepted into MD Anderson, which I’m very grateful for. I went there for the first time at the end of February. Then I went back in March. The doctor there also had a sad and serious expression when we spoke, and she said, “You know, you have something serious, which is stage four, obviously. And we really need to be aggressive.”

What my treatment has looked like

I would do this long session of chemo that would take about 6.5 hours, then I would go back home with a pump for two days. I had to stay in a B&B in Oklahoma City for about a month. I was doing therapies every two weeks, but I was also seeing the doctors. The doctors wanted me there in case something happened.

From there, the chemo started to work a little bit, so my anxiety started to go away. I started to feel a little better. So I was thinking, “Okay, this is working.” 

I was very lucky not to have major side effects. I was following the food program already with one of my nutritionists, which is done on the day of chemo. I was fasting. I was just drinking bone broth and eating some millet or something like that, which isn’t really heavy. No sugars, and I’m a sugar addict. So this really helped me to listen to my body. 

I was still going out and walking, still going to the gym, because I couldn’t stop. I was like, “I’m not going to give up right now.” And that’s the thing that’s really helped me through all my life, my mindset. It’s always been very straight and very direct. If I have to do something, I’m just going to do it with 150%. 

I found out that I have an aggressive mutation

So, after the sessions, in May, I went to MD Anderson for my second scan. I was feeling better. So I was like, “Yeah, this is going to be great.” I had these expectations, but I learned my lesson. 

The doctor said, “They actually grew and grew.” I said, “What do you mean? Because I felt some nodules here before in my hands, and now I don’t feel these nodules anymore.” She replied, “You know, we can’t go by what you feel with your hands. It grew a bit. And I’m a little worried the therapy didn’t work because your markers are high.” I was like, “What do you mean? But I feel better than two months ago.” And she was like, “I’m going to have to switch the therapy. I’m going to put you on an inhibitor.” As it turns out, I also had a BRAF V600E gene mutation, which is basically very aggressive.

So the doctor put me on an inhibitor for the gene. And then another drug, an EGFR inhibitor, which I took on a one-and-a-half-hour infusion every week. I was like, “Is this going to work?” And she’s like, “I don’t know. I really hope that this is going to work.’

My wife and I were looking at each other. “Okay, let’s dive into this other adventure.” And that’s where my mindset helped me so much, which is like, “I’m going to take this day by day.”

And then in July, I went and had another scan, and it found that everything had changed radically. The therapy was working. And the doctor went, “How? What happened?” I was like, “Okay, what do we do? Surgery?” She went, “Chill out. Let’s talk it over. Maybe at the end of the year. We have to do this one step at a time.”

What cancer has shown me

Whatever the end of this experience will be, I’m learning. I’m reconnecting with a lot of other people. I’m connecting more with my family, with my people at work. I’ve received huge support from the entire community, from Hawaii, from Europe, from everywhere. And I didn’t expect it. I mean, I did expect support, but I didn’t know how big it was going to be. And that was huge.

I’ve asked myself so many questions and made so many statements. I’m so happy. I’m so good. I can swim for hours. I can’t do this. I can. I feel like I’m a superman. No, I’m not. I’m not healthy. I was fit. I was asking these questions, and I don’t know why. I don’t know why this happened to me. The reality is, like, I didn’t give myself an explanation. I just got to the point. First of all, I’m like, well, better me than my daughter. Better me than my wife. Even if my wife is an incredibly strong being, without her, there’s no way I would go through this. And thank you, Gretchen. She’s a powerhouse. 

I’m like, okay, it’s a plan. It was written, and I’m just going to have to accept it. And I’m going to make treasure from it and learn from it. 

Adjusting to life on the mainland

Allegra, my daughter, was like, “What am I doing here?” Good question. It is a radical move. Two places are totally different. But obviously, I needed to find care. And people who actually care about what I was going through. And the main thing is, for the first couple of months, I was completely confused. 

And Allegra went, “Okay, I want to go to school.” So she ended up in the school that Gretchen attended. So she had to do the last three months of middle school. Imagine this little girl who basically just turned 14, who spent all her life in jungle school, barefoot, in tiny classes of eight kids of different ages — has to put on shoes and jeans and attend a 300- or 400-student school. And she’s like, “What am I doing here?” We’re going through a hard moment. But our concern is our daughter. So talking to her, and obviously, you know, he had this at the beginning of these things, where you feel that your daughter is not upset with you, but it’s your fault. “I want to be with my friends, and I’m here because you’re doing this. What’s happening?” 

So for us, for me, being away from the ocean, it’s tough. People think, “Oh, you live in Hawaii. You’re on the beach the whole day.” No, we do play hard, but we also work hard. The beauty of Maui, or of living in a place like Maui, is that you can quickly take a break to enjoy some waves or wind for just half an hour in the middle of the workday and then get back to your office and work afterward. So, it’s something that I don’t have anymore. 

Patience is one thing that I’m trying to teach my daughter, and patience is the thing that, you know, you increase every day. And I have to be thankful because Hawaii is going to still be there. The ocean will still be there. 

Why I feel like multiple opinions are important

I think getting multiple opinions is a must. Honestly, you don’t want to just listen to one person; it has nothing to do with whether that person is good or not. That’s not what I’m saying. But you also need to learn. Luckily, I was already very in tune with my body. I already knew a lot of things about how my body works. 

So in my conversation with my first doctor, I was documenting myself. Trying to understand what this clinical carcinomatosis is. And then I started to learn and understand so that I could have a conversation. The reality is that I believe different people communicate with each other. There are different care teams, which is amazing. There are different apps. They can communicate and share. And all of them have a different way to talk to you.

You learn different things. And I go there with my phone and ask 20,000 questions. I want to learn and confront myself, and learn and communicate. I believe it’s a must.

What I want people to know

First of all, you’re special. This doesn’t happen to everybody. So it’s both a good and a bad thing to have this. There’s a lot to learn. And the main thing is to take it head on, to not get depressed, to not think that you’re not going to make it. I understand that at the beginning, that’s what you may think. I felt the same. 

But then, when you get into the groove, just be focused on yourself and be convinced. We’re very powerful beings. And my doctor at MD Anderson told me that there is so much I can do. And I feel like we do 50%. The other 50% comes from you. You have to believe you’re at the cellular level. Your body, your brain. And when you believe, you feel better, you create oxytocin. You create all these chemical things in your body. They make you feel better. And you need to look for good support, a good medical team. But you need to believe that you’re going to get through this. And you’re going to learn from it. 

Because when you go through this, your brain changes a bit. You have this change, this little modification in your system when you know you can help. Okay, now it’s my turn to help. 

Pio M. colorectal cancer
Thank you for sharing your story, Pio!

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More Colorectal Cancer Stories

Lindsay

Lindsay D., Colon Cancer, Stage 4



Symptoms: Lump in pelvic area, funny-smelling food, weight loss
Treatment: Chemotherapy, colectomy (surgery)
Categories
Brachytherapy Breast Cancer Chemotherapy Lumpectomy Metastatic Patient Stories Radiation Therapy Surgery Treatments triple negative (TNBC)

The Gift of Time: Janice Found Purpose and Advocacy Through Stage 4 Triple-Negative Breast Cancer

Janice C. triple-negative breast cancer

The Gift of Time: Janice Found Purpose and Advocacy Through Stage 4 Triple-Negative Breast Cancer

When Janice was first diagnosed with stage one triple-negative breast cancer, she had no idea that her experience would later lead her into the world of advocacy for other breast cancer patients. A lifelong nurse, Janice thought cancer was something she could identify and help others through. But when it touched her personally, it transformed both her perspective and her purpose.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Janice’s early-stage breast cancer treatment in 2011 involved a lumpectomy, brachytherapy, and chemotherapy. For several years afterward, she lived cancer-free, traveling, spending time with her grandchildren, and easing the fear that recurrence might return. Things changed in 2016 when she found out that her cancer had spread to her lymph nodes, advancing to stage 4 metastatic triple-negative breast cancer, a type known for its limited treatment options and poor prognosis.

Janice C. triple-negative breast cancer

Janice’s response to treatment astounded everyone. Following a combination of chemotherapy and radiation, her PET scan revealed no evidence of disease. Instead of returning to work in healthcare, she redirected her professional experience into patient advocacy, dedicating herself to peer mentorship, community support, and empowering other patients navigating similar diagnoses.

Now more than eight years out from her stage 4 diagnosis, Janice lives with gratitude and purpose. She serves as director of peer-to-peer programs at Metavivor, a nonprofit that helps patients with metastatic breast cancer, and manages online support communities for those newly diagnosed. Through her openness, empathy, and advocacy, Janice redefines what it means to live with metastatic triple-negative breast cancer.

Watch Janice’s video and browse the transcript of her interview below, and you will:

  • See how peer support can be life-affirming and even lengthen survival for patients with metastatic disease
  • Discover that having the right care team can dramatically impact outcomes
  • Realize the immense emotional weight in facing recurrence, and see how patients benefit from mental health and peer resources
  • Delve into how Janice transformed grief and fear into advocacy and education for others
  • Learn this universal truth: Connection and empathy can restore hope, even in the hardest circumstances
  • Name: Janice C.
  • Diagnosis:
    • Triple-Negative Breast Cancer
  • Age at Diagnosis:
    • 58
  • Staging:
    • Initially stage 1, progressed to stage 4
  • Symptoms:
    • Appearance of lump in left breast near sternum
    • Fatigue
    • Bone and joint pain
  • Treatments:
    • Surgery: lumpectomy
    • Radiation: brachytherapy
    • Chemotherapy
Janice C. triple-negative breast cancer
Janice C. triple-negative breast cancer
Janice C. triple-negative breast cancer
Janice C. triple-negative breast cancer
Janice C. triple-negative breast cancer
Janice C. triple-negative breast cancer
Janice C. triple-negative breast cancer
Janice C. triple-negative breast cancer

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

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

Transcript of Janice’s Interview
  1. Hi, my name is Janice
  2. Finding the first lump
  3. How they treated my first diagnosis
  4. I feared the cancer’s return
  5. I recieved a stage 4 diagnosis
  6. Navigating the right care team and second opinions
  7. Peer support and advocacy are invaluable
  8. The steps I took with stage 4 breast cancer
  9. What I want others to know

Hi, my name is Janice

I was diagnosed with stage one triple-negative breast cancer in 2011. Five years later, in 2016, I was diagnosed with stage four metastatic triple-negative breast cancer.

I wanted to be a nurse from the time I was three years old. For me, those big dreams never changed. I worked as a nurse, mainly in pediatrics, for over 20 years and absolutely loved it — the children and the nursing profession. After the pediatrician I worked for left private practice, I did a short stint in pharmaceutical sales. I have always been connected to healthcare in some way; it is a true passion. Although I am retired from nursing, my diagnosis led me back into healthcare environments. 

I’ve been married for 46 years. I have two adult children and three beautiful grandchildren, ages eight, nine, and ten, whom I call my grand joys. I treasure our time together; they love visiting me in winter.

After my early-stage breast cancer diagnosis, I did not get involved with advocacy initially. My husband had just retired; we sold and bought a house, and moved into it — all within a three-week period and during my diagnosis. It sent us on a different path for retirement. We planned to travel the world and enjoy life, but after my treatment and getting past the initial fear of recurrence, we resumed travel and welcomed our grandchildren.

Then I found out I had stage four triple negative breast cancer. The prognosis was bleak, with a median overall survival of around 9 to 15 months in 2016. I wondered how to spend that time outside of being with loved ones. I became interested in advocacy and applied for Hear My Voice through Living Beyond Breast Cancer. I was accepted and went for training in Philadelphia in April 2017, about nine months after my metastatic diagnosis. I thought I would have a bit of time to make an impact, but then I had a complete response to my first line of treatment.

One month after treatment, I had radiation, and then a follow-up scan showed no evidence of disease. There were no targeted therapies for triple-negative breast cancer in 2016. My oncologist suggested monitoring with scans and would start treatment again if anything reappeared. That was eight and a half years ago. I feel very blessed.

After that, I dove into advocacy: research, peer support, and attending scientific breast cancer conferences. My husband likes to say we are retired, but my wife works 30 to 40 hours a week as a volunteer. He supports my advocacy work. Through this community, I’ve met wonderful people, including advocates and other patients. Although I’ve lost many friends over the years, staying active in this space allows me to honor them and keep their memories alive.

Finding the first lump

I found a lump near my sternum in my left breast right before my annual mammogram. At my gynecologist visit the day before, I reported the tiny, tender lump, about the size of a little pea. My gynecologist said, “That’s good news because cancer isn’t painful, it’s not tender. Still, report it at your mammogram.”

The next day, the mammogram tech struggled to image the lump because it was near the sternum and up high, but she succeeded. My gynecologist was shocked since she hadn’t felt anything during the exam. As a nurse, I asked to see the tissue from my core needle biopsy and, seeing that it was tan, suspected bad news. A week later, I found out it was triple-negative breast cancer. 

Despite other cancers in my family, I have no breast cancer history; I was the first. My gynecologist’s comments led me to believe it was nothing serious, but the diagnosis was a shock.

How they treated my first diagnosis

Since I was stage one, my treatment plan, which is managed differently now than in 2011, involved a lumpectomy, then radiation, and finally chemotherapy. I received brachytherapy radiation with a balloon inserted into the lumpectomy cavity, twice a day for five days, with beads targeting that area.

I had chemotherapy after radiation. My oncologist, who was a generalist, originally suggested six rounds. As a nurse who values second opinions, I consulted additional specialists. The second opinion recommended four rounds instead of six, which was excellent news given the side effects I experienced.

I feared the cancer’s return

After finishing chemotherapy, I knew recurrence risks were high, but I did not realize cancer could jump directly from stage one to stage four. My mammograms and labs were normal, but fear of recurrence lingered, especially for the first two years. Triple-negative breast cancer is known to recur within two to three years. After reaching the third year, I relaxed somewhat, but the first six months were very difficult; I believe I had PTSD.

Support from a nurse via my insurance company each month helped calm anxiety. Eventually, I learned that 30% of those with early-stage breast cancer face metastatic recurrence. 

At my five-year checkup, after resuming life, traveling, and spending time with family, I reported bone and joint pain. My oncologist suggested a PET scan “just to make sure,” as recurrence five years out seemed unlikely. But that wasn’t the case.

I recieved a stage 4 diagnosis

After the PET scan, I met with my oncologist, who always delivers results in person. My husband, who, with one exception, has attended every appointment, was with me. 

My oncologist, sitting close, took my hands and said, with tears in his eyes, “I am so sorry. Your PET scan shows recurrence of disease.”

I was fortunate to have oligometastatic disease, meaning a low burden of disease —regional lymph nodes on the original side and one contralateral node, qualifying as stage four. No bone metastases were found, and the bone and joint pain was attributed to a medication side effect, not cancer. That pain may have saved my life by prompting further investigation.

We were speechless. The car ride home was silent, and processing the news took time. Research from vetted sources showed metastatic triple-negative breast cancer was typically “pretty gloom and doom.” Telling my family, especially my adult children and very young grandchildren, was difficult. My daughter struggled most with the thought of losing her mother.

Navigating the right care team and second opinions

Many do not know much about metastatic breast cancer and incorrectly assume all breast cancer types are the same. My husband joined me at the Living Beyond Breast Cancer conference in 2017, attending sessions I marked for him, though he is an engineer, not a healthcare professional. He took “furious notes.”

He suggested getting a second opinion and prepared questions for my oncologist: “Do you see all types of cancers? Do you have metastatic TNBC patients?” My oncologist had none and focused on GI cancers, although he had some breast and metastatic breast cancer patients. This prompted my search for top breast medical oncologists at NCI-designated cancer centers, leading to multiple second opinions.

Recommendations took me to Moffitt, Mayo Jacksonville, a phone consult at Dana-Farber, and eventually MD Anderson in Houston, where I found an oncologist who was a perfect fit. I saw her annually and recently changed my local oncologist as well.

Peer support and advocacy are invaluable

Getting involved with Living Beyond Breast Cancer connected me to others living with metastatic disease and led me to hundreds of NBC-specific Facebook support groups. Joining these communities taught me invaluable lessons about my disease, its subtypes, and treatments through peer experiences.

Peer support is essential. Metastatic breast cancer is isolating and lonely, but connection through online and in-person groups is vital. There’s evidence suggesting that those who join peer support groups may experience longer survival. I am the director of peer-to-peer at Metavivor, where we train leaders to start in-person support groups. Nothing replaces face-to-face connections.

It is a total emotional rollercoaster when you’re newly diagnosed. To help newly diagnosed patients, I founded a Facebook group specifically for those within two years of diagnosis. Everyone in the group is in the same headspace, learning together without fear of asking questions. When members reach three years, we “graduate” them into broader groups.

Heartwarming encouragement comes from peers: those a year or two ahead saying, “You’ll get there, I promise.” Experienced peers reassure, “You will feel more at peace once you get a little time.” That encouragement means everything, especially coming from those who have lived it.

The steps I took with stage 4 breast cancer

After my stage four diagnosis, the oncologist suggested chemotherapy. At the time, no targeted therapies were available. Now, immunotherapy and antibody drug conjugates exist for metastatic TNBC. The treatment plan was combination chemotherapy, then a scan after four cycles to evaluate.

At my fourth cycle, my PET scan showed that every single lesion had resolved, and there was no evidence of metastatic disease. My oncologist proposed radiation instead of more chemotherapy, then another scan, and continued monitoring, with no active treatment unless something reappeared. This was unsettling, as I had learned that most stage four patients remain on treatment for life. I pursued additional second opinions, all of which agreed with my oncologist’s close monitoring approach.

The first year involved scans every two or three months, then every four to five months, then every six months. Last year, my scans increased from every six to nine months, and now to annual scans.

A couple of times, suspicious findings — such as a possible lung lesion — were later cleared with further testing. The emotional journey has been intense, but being so far out, with no evidence of disease, is remarkable. If progression happens, it will feel like a brand-new diagnosis.

What I want others to know

When you’re diagnosed with metastatic breast cancer, it is not an immediate death sentence. There is hope if you look for it. 

I know that it’s hard. It’s very, very hard. But it helps if you learn as much as you can about your disease in particular. Learn as much as you can about the treatments that are available for your disease. 

You don’t have to learn about everything. You don’t even have to get involved in advocacy. But you have to self-advocate. You need to be your own best advocate. And that requires having just some basic knowledge about your disease and the treatments that are available for your disease.

Janice C. triple-negative breast cancer
Thank you for sharing your story, Janice!

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More Triple-Negative Breast Cancer Stories

Maggie C. feature profile

Maggie C., Triple-Negative Metastatic Breast Cancer, PD-L1+



Symptoms: Bruising sensation in the breast, soft lump

Treatments: Chemotherapy, clinical trial (antibody-drug conjugate and immunotherapy)
April D.

April D., Triple-Negative Metastatic Breast Cancer, BRCA1+



Symptom: Four lumps on the side of the left breast

Treatments: Chemotherapy (carboplatin, paclitaxel doxorubicin, surgery (double mastectomy), radiation (proton therapy), PARP inhibitors
Chance O. feature profile

Chance O., Triple-Negative Breast Cancer, Stage 2, BRCA1+



Symptom: Lump on breast
Treatments: Chemotherapy (doxorubicin, cyclophosphamide, paclitaxel, carboplatin), surgery (double mastectomy), radiation, radical hysterectomy (preventive)
Nicole B. triple-negative breast cancer

Nicole B., Triple-Negative Metastatic Breast Cancer, Stage 4 (Metastatic)



Symptoms: Appearance of lumps in breast and liver, electric shock-like sensations in breast, fatigue

Treatments: Chemotherapy, surgeries (installation of chemotherapy port, mastectomy with flat aesthetic closure), targeted therapy (antibody-drug conjugate), hyperbaric oxygen therapy, lymphatic drainage
Kelly T. feature profile

Kelly T., Triple-Negative Breast Cancer, Stage 3C



Symptoms: Swollen lymph nodes on the neck, high white blood count
Treatments: Chemotherapy (doxorubicin, cyclophosphamide, paclitaxel, carboplatin, capecitabine), surgery (nipple-sparing, skin-sparing double mastectomy), radiation, hormone therapy (tamoxifen)

Lucy E., Triple-Negative Breast Cancer, Grade 3, BRCA1+




Symptom: Lump in breast



Treatments: Chemotherapy, surgery (double mastectomy)
Melissa sitting in her car

Melissa H., Triple-Negative Breast Cancer, Stage 2B, IDC



Symptom: Lump in left breast

Treatments: Surgery (mastectomy), chemotherapy
Melissa is the founder of Cancer Fashionista
Melissa B., Triple-Negative Breast Cancer, Stage 1

Symptom: Pea-sized lump

Treatments: Chemotherapy, surgeries (bilateral mastectomy, reconstruction)

Stephanie J., Triple-Negative Breast Cancer, Stage 3, Grade 3, IDC, BRCA1+



Symptom: Lump in left breast

Treatments: Chemotherapy, surgery (double mastectomy, oophorectomy, hysterectomy, breast reconstruction)
Categories
Immunotherapy Keytruda (pembrolizumab) Lymphadenectomy Melanoma Patient Stories Skin Cancer Surgery Treatments Wide Local Excision

From a Tanning Obsession to Stage 3A Melanoma: Brittanny’s Unexpected Skin Cancer Experience

Brittanny G. melanoma

From a Tanning Obsession to Stage 3A Melanoma: Brittanny’s Unexpected Skin Cancer Experience

Brittanny’s experience with stage 3A melanoma is eye‑opening and deeply relatable. Growing up in a small town where she loved dance, cheerleading, and soaking up the sun, Brittanny never imagined that a simple mole could change her life. In 2021, at only 27, she was diagnosed with stage 3A melanoma. She had no real warning signs aside from a growing, dry, and ugly mole on her shin. She felt tired at times, but as a young mom raising a family during the COVID-19 pandemic, she dismissed it. Her yearly skin checks were routine until one missed appointment in 2020 led to a life‑altering discovery the next year.

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

The diagnosis didn’t hit immediately. Brittanny didn’t even know what melanoma was when her dermatologist first said the term. It only sank in when her oncologist calmly explained the seriousness: this was skin cancer that could spread internally, and she needed surgery and a PET scan. Having a young son at home and hopes of growing their family made the news even more devastating.

Brittanny G. melanoma

Brittanny’s treatment involved surgeries and a year of immunotherapy. The medication taught her immune system to recognize and respond to melanoma cells, but it came with digestive side effects and a permanent change in how her stomach feels. Still, she focuses on being alive and present with her family. Today, her follow‑ups are down to once a year, and she finally feels free to live summers without needing to work around appointments.

Through this experience, Brittanny discovered her purpose. She now advocates for skin cancer awareness and speaks openly to lawmakers about the importance of cancer research funding. She wants people to understand that melanoma can be deadly. Skin cancer, of any type, should never be minimized, despite being the most common form of cancer. She supports others facing a similar diagnosis, reminding them that their lives and stories matter.

Watch Brittanny’s video and read the transcript of her interview for more about her story.

  • How she didn’t think she had any symptoms until a simple mole changed her life
  • A young mom discovers her tan addiction could have heavy consequences
  • From cheerleader to cancer advocate: how melanoma gave Brittanny a new purpose
  • What happens when a mole on your shin becomes stage 3A melanoma
  • Brittany never thought skin cancer could be serious, until it nearly took everything
  • Name: Brittanny G.
  • Diagnosis:
    • Skin Cancer (Melanoma)
  • Age at Diagnosis:
    • 27
  • Staging:
    • Stage 3A
  • Symptoms:
    • Mole that enlarged, changed shape, and became dry, patchy, and flaky
    • Fatigue
  • Treatments:
    • Surgeries: wide local excision, lymphadenectomy
    • Immunotherapy
Brittanny G. melanoma
Brittanny G. melanoma
Brittanny G. melanoma
Brittanny G. melanoma
Brittanny G. melanoma
Brittanny G. melanoma
Brittanny G. melanoma
Brittanny G. melanoma
Brittanny G. melanoma

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

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

Transcript of Brittanny’s Interview
  1. My name is Brittanny
  2. I only had one symptom
  3. The path to my diagnosis
  4. The moment everything changed
  5. When the diagnosis finally hit me
  6. My treatment plan
  7. The side effects I experienced during treatment
  8. What my follow-up appointments look like now
  9. What cancer showed me
  10. What I want others to know

My name is Brittanny

I was diagnosed with stage 3A melanoma, skin cancer, in 2021.

I grew up in a very, very small town. My mom put me in dance when I was three years old. And then I was a cheerleader in school. So my earliest memories are of growing up and being a little girly girl. I loved dressing up. I loved being on camera. 

I only had one symptom

What disturbs me so much is that nothing was indicating that I was sick. I did not realize that I ever had cancer until I went to the dermatologist and they told me. And it took me being diagnosed with cancer and having all the surgeries and getting to the point where I had to comprehend how serious melanoma was, which took months into my diagnosis. 

I had to look back and really dig to see if there was anything that could have told me that I had cancer. And the only thing that I can think of is maybe I was a little bit more tired than usual. But again, I was a young mom. My son Jackson was five or six. He was just finishing up his first year of school. We were in a pandemic. So all these things were changing in my life. 

There was nothing that made me think, “Oh yeah, I have cancer,” other than the fact that, of course, I had a mole on my leg that was growing, and it was huge and it was ugly. But I didn’t feel sick. I didn’t look sick. Nothing.

The path to my diagnosis

I’ve told this story many times. I had been going to the dermatologist yearly for a couple of years before my diagnosis, just because I had health insurance and Medicaid. I learned about Medicaid and all that. But through getting Medicaid, I learned that I can have doctor’s appointments of all sorts. I call it my guilty conscience. 

One of the first doctor’s appointments I scheduled was a skin check. I had grown up lying in tanning beds and lying in the sun outside. I was obsessed with tanning and being tan. You can even call it addiction. In my youth, my teenage years, I was always outside in the summer. So, long story short, I began to schedule appointments with a dermatologist. I was going to skin checks year after year after year, and getting clean results. 

But come 2020, I missed one skin check because of quarantine. And in 2021, I had my yearly skin exam, and that’s when they found it. So it was just terrible timing. Just bad luck and terrible timing, mixed with a guilty conscience. That was the only reason why I even went to a dermatologist to begin with. At some point in time in my life, I had heard that tanning beds cause skin cancer, and of course, I had lain in tanning beds. And so my risk of skin cancer was potentially higher than most people’s. And all of that together, one plus one equals two — I have melanoma now. 

So it was on the very front of my shin. I could see it every day. It was in a very easy-to-see spot on my body. It wasn’t like it was on my back, where I couldn’t see it. Right. So that’s a good thing. I saw it growing. I noticed it was ugly. And I also noticed that it was getting dry.

The moment everything changed

It was business as usual. I went in and they said, “Hi, how are you? Is there anything concerning that you want me to look at?” And I said, “I guess this one on my shin.” 

Two seconds later, the doctor said, “That’s melanoma.” And I said, “What’s melanoma?” Which is hilarious because I’d been going to skin checks time after time. But I was 27 years old. I can’t emphasize that enough. I’m sure in the past, in every skin check I’d had, I’d been educated on what melanoma was. I’m certain that it went through one ear and out the other, because what 20-year-old thinks they’re going to get cancer? I wasn’t in a state of mind where I was learning what these types of skin cancers are. 

I didn’t react to what the doctor said, because I had no idea what melanoma was. I guess it could have been different. If I knew what it was, I might have been like, “Oh, wow, that’s the deadliest form of skin cancer.” I might have started bawling in that moment had I known what melanoma was. 

I had to come back the next day to get it biopsied, and they sent it off. It was probably a day or two later that they called back and they confirmed that it really was melanoma, and that I was going to have to schedule an appointment with an oncologist. 

When the diagnosis finally hit me

Yeah, I remember that was the first doctor’s appointment that I went to where I cried because she was the one who sat me down and explained everything to me and my partner. That’s the first appointment where I finally broke down and bawled my eyes out, because I finally realized that this was serious and that I was about to have to change my life forever. 

The doctor told me that I was going to have a second surgery after my biopsy, a wide local excision that would get bigger margins to try to remove all the cancer cells from my shin. Because I had delayed getting that melanoma checked out for so long, it had potentially spread internally. And that was terrifying because I learned that a simple mole can be cancer, which was just blasphemy to me. How on earth can a mole be cancer? That’s just mind-blowing to me. Secondly, how can it spread internally? All these things were circulating in my brain, and it was just insane.

The doctor also said, “You’re going to have to get a scan called a PET scan, where they put you in a machine. They scan your whole body to see if the cancer has spread internally. It could be anywhere in your body: your brain, your liver, your lymph nodes. And I’m just thinking, “I have a five, going on six-year-old son at home. We’re just starting our family.” We were planning and hoping to expand our family and have more kids. I think that’s the moment when I knew that this was serious.

My treatment plan

They did the wide local excision and a sentinel lymph node biopsy. They found that the melanoma had spread to only one lymph node in my groin, which was excellent news. So they removed that lymph node from my groin. And basically from there, I was cancer-free. Good to go. 

My oncologist then recommended immunotherapy treatments. I use the drug called Keytruda. I had 18 rounds of Keytruda every three weeks for an entire year. Keytruda basically teaches your body to fight off the cancer cells. So if the melanoma cancer cells try to return to the body, the immune system would do what it was supposed to do the first time and fight off those cancer cells. However, the downside of Keytruda is that it has some pretty severe side effects, and it can alter you. It changes your immune system. But I’m still alive today because of my immunotherapy. And of course, I’m really happy that I’m still alive. 

I got a port installed in my chest. I have a little scar here still. So the hospital took a few vials of blood and sent them off to the blood lab for testing. They then hooked me up to an IV through my port, and I got fluids. It’s like the influencers on Instagram who get vitamins and stuff through IV. It takes about 30 minutes.. 

The side effects I experienced during treatment

My side effects were mostly digestive issues. I had a lot of stomach pain, a lot of air. I would burp and pass gas a lot. My stomach would also often hurt. It wasn’t to the point where I felt like dying. My stomach felt yucky, pretty much all the time. It wouldn’t ruin my day, though. I could still get up and live my life; I just felt heavy. 

Now, my stomach always feels heavy and full, and I have to go to the bathroom a lot more than normal. I have colitis now, so I have episodes of really bad stomach pain. If anybody has colitis, ulcerative colitis, or Crohn’s disease, you probably know what it’s like. I had one pancreas attack that was more because I wasn’t getting help with my colitis sooner. That was like a niche situation. But yeah, it’s mostly stomach issues, which, you know, I can deal with. 

I’m alive. That’s the biggest thing. I’m happy to be alive, and I’m not dealing with melanoma. I’ll take it.

What my follow-up appointments look like now

It was pretty hefty initially afterwards, because I had to go to the doctor every three months for PET scans. And I had my lymph nodes, ultrasounds, and skin checks. But then it went to six months. Now, I’m about I’m three years out and I get checked every 12 months. 

I feel like this is the first summer that I’ve actually gotten to live. I got to go on three vacations that I didn’t have to schedule around doctors’ appointments. I’ve actually enjoyed myself and felt free. 

At the back of my mind, though, I’m always afraid, because melanoma has a high chance of recurrence. And that’s my reality. So every day that I live, in some sick way, is one day closer to the day it’s likely going to recur. 

But I am just trying to keep my spirits up and enjoy every single day.

What cancer showed me

I feel like I have so much more purpose now. 

Before, I was living, but I wasn’t living with much of a purpose. I was just kind of here, doing what I was supposed to do, getting up, going to work, raising my family, and so on. And now I have purpose.

It’s not like I don’t have bad days. I still have bad days all the time. We’re always going to have bad days. But even during my bad days, you know what? It’s fine, because I’m alive and I get to live those days, and I’ll do better tomorrow

I really hate cancer, don’t get me wrong, but I love the fact that I get to advocate for cancer now and use my voice to help people who are going to be diagnosed with cancer today or tomorrow or next year, as well as those who have already been diagnosed with cancer. 

I never had a purpose before cancer. I didn’t know what I wanted to do with my life. And now that this thing was thrown at me, I’m able to use it for good. I just went to Washington, DC, and got to talk to my senators and my congressman about how it is so important that we keep funding cancer research, because I literally would not be alive today if immunotherapy didn’t exist. 

It’s just so fun to use this for good. And I don’t know, it just makes me happy.

What I want others to know

The biggest thing is that skin cancer is serious. It’s really sad to me. And something I never thought that I would deal with after being diagnosed with melanoma is the number of people who, after I tell them I had skin cancer, would go, “Oh, you’re fine. It’s not serious.” I never thought that I would be diagnosed with cancer and then have to defend myself that my cancer or my type of cancer is serious and could actually kill me. 

So I just want people to genuinely take it seriously and quit minimizing people out there in the world who are dealing with skin cancer every day. Just because it [skin cancer] is the most common form of cancer does not mean that it’s the least serious form of cancer. And I feel like that’s what we have to deal with so much. And it’s really sad, and it hurts us all.

Brittanny G. melanoma
Thank you for sharing your story, Brittanny!

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More Melanoma Stories

Mart H. melanoma

Mart H., Melanoma, Recurrent (Stage 2A, Stage 1B, Stage 1A, Stage 0) & Basal Cell Carcinoma



Symptoms: Non-healing lip lesion, black mole on upper arm that grew, changed color, and bled

Treatment: Surgeries (wide local excisions on the arm, chin, cheek, and back)
...

Russ H., Melanoma, Stage 4



Symptom: Appearance of what appeared to be a wart at the bottom of his foot

Treatments: Radiation, surgery, immunotherapy
...
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Abby E., Melanoma, Stage 4



Symptoms: Small yet fast-growing, marble-like growth under right arm; intermittent headaches
Treatments: Radiation, immunotherapy
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Meridith B., Melanoma, Stage 4



Symptom: Seizure

Treatments: Surgery (craniotomy to remove a brain metastasis), immunotherapy
...
Kristin M. feature profile

Kristin M., Melanoma, Stage 3A



Symptom: Change in color and border of a mole on her leg

Treatments: Surgeries (melanoma & lymph node removal), immunomodulator (interferon)
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Megan C., Melanoma, Stage 4



Initial Symptoms: Itchy mole, exhaustion, extreme pain in hip, leg and back
Treatment: Surgery, radiation, immunotherapy
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Categories
Chemotherapy Orchiectomy Patient Stories Surgery Testicular Cancer Treatments

A Trainer’s Strength Tested: Shawn’s Stage 3 Testicular Cancer Journey

Shawn H. testicular cancer

A Trainer’s Strength Tested: Shawn’s Stage 3C Testicular Cancer Journey

At first, Shawn and his doctor were sure he had suffered a workout injury, not testicular cancer. As a trainer who spent his days in the gym, soreness and a little swelling seemed like the kind of thing that could happen with the job. His doctor agreed, saying, “Oh, you’re fine. It’s probably something you did [working out],” and scheduled what was supposed to be a simple, routine surgery.

But when Shawn woke up, everything had changed. The procedure revealed both seminoma and non-seminoma types of testicular cancer. The diagnosis came just a week after he’d finished reading Lance Armstrong’s book about surviving the same disease.

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

Doctors initially thought Shawn had a condition called varicocele and hydrocele, brought on by his role as a trainer and suggested minor surgery. It was during the procedure to fix things when his surgeon was shocked to discover that he had testicular cancer. After being told, Shawn remained calm and focused on his next steps. He underwent an orchiectomy to remove the cancerous testicle and researched the best treatment options. Despite setbacks with a local doctor, he found a supportive medical team in Indiana. The doctor warned him about the aggressive treatment’s severity, but Shawn accepted the challenge, beginning chemotherapy soon after.

At UNC Medical Center, Shawn underwent intensive chemotherapy. He balanced treatment with work, receiving infusions for five consecutive days each week. Despite the hardships, he maintained a positive outlook. Shawn’s connections with medical professionals, many of whom were his clients, provided additional support.

Throughout treatment for his testicular cancer, Shawn faced physical and emotional challenges. He lost 45 pounds and experienced changes in his appearance and senses. Despite these struggles, he found ways to remain mentally strong, employing visualization techniques and drawing motivation from supportive relationships. His network, including fellow gym members, attempted to provide normalcy, though their visits sometimes added stress.

The impact of cancer extended beyond physical health. Shawn’s marriage became a casualty of his cancer. Thankfully, his mother offered consistent support. Reflecting on his journey, Shawn emphasized that cancer itself is often a manifestation of internal imbalances. He consequently advocates addressing stress and having a positive attitude as essential components in combating disease.

After 4 months of treatment, Shawn entered remission, though the fear of relapse remained. Ongoing check-ups were daunting, but he gradually adapted to the uncertainty.

In sharing his testicular cancer story, Shawn emphasizes the importance of not delaying treatments until desperate. He accordingly encourages proactive health management and emphasizes the power of a positive mindset in helping deal with life’s challenges. Furthermore, he advises discovering one’s purpose and living in the present, as life can bring unexpected changes.

Watch Shawn’s video and read his transcript below to:

  • Discover how a simple gym-related check-up turned into a shocking cancer diagnosis
  • Explore Shawn’s candid and inspiring journey through testicular cancer treatment.
  • Find out how Pac-Man visualisations and positive thinking helped him fight back
  • Learn what it’s really like to get the “all clear” and live with the long-term effects
  • Read Shawn’s message about purpose, survival, and refusing to wait for life to happen.
  • Name: 
    • Shawn H.
  • Diagnosis:
    • Testicular Cancer (Seminoma and Non-Seminoma)
  • Staging:
    • Stage 3C
  • Age at Diagnosis:
    • 31
  • Symptoms:
    • Discomfort in testicular area
  • Treatment:
    • Surgery (orchiectomy)
    • Chemotherapy
Shawn H. testicular cancer
Shawn H. testicular cancer
Shawn H. testicular cancer
Shawn H. testicular cancer
Shawn H. testicular cancer
Shawn H. testicular cancer
Shawn H. testicular cancer
Shawn H. testicular cancer

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

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

Transcript of Shawn’s Interview
  1. My name is Shawn
  2. I thought my symptoms were from excessive exercise
  3. The day of surgery
  4. What happened after surgery
  5. My testicular cancer treatment plan
  6. The side effects I experienced
  7. How I managed my mental health
  8. The day I got clear scans
  9. Why I share my testicular cancer story
  10. What I want others to know

My name is Shawn

I was diagnosed with testicular cancer a week after reading Lance Armstrong’s book. I found out I had non-seminoma and seminoma, both forms of testicular cancer, which was really interesting. 

I thought my symptoms were from excessive exercise

When you exercise, a lot of times there’s a thing called a varicocele or a hydrocele, where maybe you had some impact on the testicle area from working out. So the doctor went, “Oh, you’re fine. It’s probably something you did. We’ll do a routine surgery.” 

He did an ultrasound and said, “Okay, you have a varicella, which means there’s not as much blood flow to one side. And then the hydrocele is like water goes in, but fluid doesn’t come out. So we just make a slit. We release it. Don’t worry about it. You’ll be fine.” Then it started getting larger. He goes, “Okay, let’s just take care of this when you have time.” And Christmas time is a little slow for the gym business, so I had it set up for a routine surgery. 

The day of surgery

They were going to do the hydrocele and the varicella together, for 30 to 40 minutes. So I went in, and when I was under, the entire staff froze because they saw it was cancer. The doctor had no idea that that’s what it was going to be.

They had to step out of the operating room for a minute and collect themselves. And I didn’t know anything because I was on the surgical table. So afterwards, the doctor wakes me up and he goes, “I’ve got something to tell you.” And he told me the diagnosis. 

And I said, “What do we do now?” And he goes, “Did you hear what I said?” I’m like, “Yeah, but I can’t do anything about this. What do we do moving forward?” And he’s like, “Wow. Most people don’t react this way.” I’m like, “What do you want me to do about it? You took care of what you could take care of, right? You did your job. Great. Now let’s go.” 

And that’s how I’ve always been. Because I can’t sit there and be like, “Oh my God.” I know why we need to take a course of action. It’s time to go. And at that point, they didn’t realize what stage it was. 

What happened after surgery

So, after the staging, I needed to have surgery, an orchiectomy. We did research to figure out the best person to tackle this, because I know one place in Texas and Indiana, two of the highest-ranking places for this. And the thing that’s different with me is that my clients were a lot of doctors. So the head of UNC Hospital and their medical school, the head of urology, and the head of cancer were clients of mine. 

I said, “I’m going to this well-regarded doctor, and I’ll bring back the protocol.” The doctor that they had me set up with got really upset with me. And I’m like, “Listen, I’m already under stress. Why do I need this?” So she actually got fired. And then I went up to Indiana and met with another doctor. He goes, “I’m actually going to probably almost put you near death because the treatment is really severe.” I’m like, “Okay.” So they created the protocol and sent me home. A week later, I started chemotherapy. 

My testicular cancer treatment plan

I got to UNC hospital. I asked, ”How long is this treatment going to take?” They’re like, “If we run you at 165 milliliters, you’re going to be here for 16, 18 hours. We’re going to jump you up to 650. You’ll get out of here in 6 to 8 hours.” 

And so I would go to work and then come in for an infusion. The infusion people didn’t realize it was five days in a row for eight hours. So, pretty much, it’s one of the highest runs of drugs into your system to combat this cancer. So for the first month, I could go to work, and then they’re like, “Listen, you’ve got to come in early because we can’t stay here all night with you.” I was an outpatient. I lived down the street, so I would come in early. And the thing is, being at the state hospital, they had people. This just blows my mind. From prison in a corner, strapped to the table with cuffs. I’m going. What do you think they’re going to do? Run! Like, come on, man, we’re here for treatment. And people would ask me all the time, Why do you have so many doctors? I’m like, they’re my clients. 

So all the people from the hospital would come in and show up, and they’re like, “Wow, you don’t look like you have cancer.” I’m like, “What does a cancer patient look like?” They’re like, “Well, how’d you get it?” I’m like, “I don’t know, I didn’t order it on eBay or Amazon. It is what it is.” And the treatment lasted for four months. 

I lost 45 pounds during that time. My hair all fell out. This isn’t from chemo, so I knew what my head looked like. So when it started thinning, I shaved it off. And I went for a walk one day, and no one was home. And I’m like, “Who am I? I gotta turn around.” I didn’t think I was going to make it home because it affected my lung capacity so much. And I think that’s the thing, you’re all right one day, and the next day you’re like, “Oof, I need time to relax.” And being younger, I was 31 or 32 at the time when people would come over, it was almost like they felt they were going to catch it. They didn’t know how to react or talk to me, and I remember all the guys and some girls from the gym came over. And I’m sitting there, and they’re all sitting around like, this is awkward as heck. 

Like, what am I supposed to say? And they’re all trying to ask weird questions. So I’m talking and talking. And at one point, they all leave. And I just went and got sick in the bathroom because of the stress of trying to look normal and feel normal. And there are certain days that they’d get me on drugs to produce more red blood cells because my white blood cell count was down. And that was ten times worse than the chemotherapy drugs because of how achy it made me feel. And the funny thing was, this kid I was working with, he was ten years old, and he was going through cancer treatment at the time. And I’m like, “Wait a minute, why does he get to take anti-nausea meds?” And there were other things I couldn’t do either. “Don’t take supplements because they’re going to screw up your blood work.” I was just blown away by all the things they told me not to do. I’m glad they’ve completely taken a different approach to treatments. 

The side effects I experienced

At first, it was weird. You get really tired, and it hits you all of a sudden, like, after treatment, I’m not doing anything. About 24 hours later, I was fine because I took a lot of different supplements to get the drugs out of my system. So my immune system would build itself up because, again, those drugs only last a certain amount of time. You want to get them out. Drinking a lot of water was helpful. Taking different supplements helped flush it out of my system, because it puts a lot of stress on your kidneys and liver. So the weird thing is, because I didn’t do a port and I don’t know why, they had it in my arm, and they would just tape it up every week, and they’d switch arms. My veins started to harden in my arm, and it hurt so bad. And basically, I don’t have a bicep vein because it just flattened out and disappeared. And the weird thing was, when they would try to get my veins, my veins would move. They’re like, “Yeah, we’d go near you with a needle and your vein would move to get out of the way.” It didn’t want to be injected after a certain amount of time. 

Another effect was that I couldn’t sleep. It was weird. And I had a table in front of me, and I would have different kinds of water and juices at different temperatures. Sometimes I would drink, and they would taste all funky and weird. My taste buds changed drastically the entire time. My skin got almost a gray look to it, and I smelled like chemicals. And once in a while, I would get nausea. But they gave me these anti-nausea pills, which actually knocked me out. I didn’t take any pain meds either. I’m just against as many drugs as I need to take.

How I managed my mental health

I did a lot of visualization work. I picked Pac-Man, which would go in and gobble up the cancer, and then I’d go to the bathroom. I would get rid of it. I did a lot of work motivating athletes. The most interesting thing was I was out at a place getting lunch, and this woman walks up to me and she goes, “Hey, I haven’t seen you in a while. What’s been going on?” I go, “Yeah, I’m going through cancer.” She goes, “When you’re done, I want to train with you.” So the motivation to get back to helping people was amazing. This person, after we trained, lost like 30 pounds, went on to win a gold medal in the Olympics in women’s soccer, and she was one of their outstanding players, and that was the motivation that I had that people still needed what I did when I was in chemotherapy. I would be listening to different things, and there would be motivational things on YouTube. Certain sayings I would use. And again, remember, there are points where you’re just like, “Why me?” And you just have to fall apart emotionally and let that out. I remember asking my dad to shave my head. He goes, “Why do you want me to do it?” And the interesting part is that I felt connected to him to do this. And I was married at the time. Soon after, I got divorced because my wife couldn’t deal with it. 

She would just go do her own thing, and she would talk to me like nothing was happening or going on. But my mom was always there. And it was comforting to have someone there. And that’s the thing is the ex, being my wife at the time, would go out of town to do her training, and I’d have a buddy stay with me because I needed someone to sit with me. I couldn’t be by myself, because all kinds of crazy thoughts would go through my head. Because I wasn’t sleeping normally. We had animals. I needed help, someone to help me take them out. And again, it’s always, “What did I do to deserve this?” And then you think about the reason cancer shows up. And this is what I explain to people that I work with who’ve gone through cancer. Cancer is you. It’s not something outside of you. So if your body created it, that means there’s an imbalance. And the imbalance can come from internal stress. It can come from external factors, too, like chemicals and all kinds of other things. If you can create it, you can get rid of it. And people are like, “Well, that’s crazy. I’m like, “No, it doesn’t have a mind of its own. You have a say in how you boost your immune system with the hormones that are in it, and in how you feel.”

And look at the situation. This is based on science. This is not just something. No quantum physics energy. The more positive you are, you think about it, the more you surround yourself with positive things, the better food you take in. It gives you an advantage over just not caring. 

The day I got clear scans

I was declared in remission four months after I began my treatment. They took a blood test. They’re like, you have no more markers. We did a CT scan. There’s no more cancer there. Your lymph nodes, like they said, were completely clear. You’re good to go. And I’m like, “What does that mean? Because what is remission? That means it’s not active to me. Is it there?” “We don’t know.” And then I’m like, okay, what’s the follow-up? And I think it was every month in the beginning. Then it was every three months, then every six months, then once a year for five years. I’ll tell you what, man, that first time going back is scary as hell because you don’t know. It was the most freaky, uncomfortable place I’ve ever been in my life because I didn’t want to be back there.

And you don’t know when you’re going through this. Is it going to come back? They don’t know. And people, you know, get out of remission all the time. Why? No one knows. I mean, we may have some thoughts on that, but it’s a scary thing, man. Then you go back three months, then you’re fine. Then the one year is the scary one because you get the five years, you’re like, oh, you’re free. I’m like, what does that mean? And then what did the drugs do later on to cause other issues? And the reason I’m bringing that up is I had a heart attack three years ago. I eat clean, and I exercise all the time. Could it have been a cause of the cancer? “We don’t know, but there’s no family history.” I just went to the hospital feeling okay, but this has happened. Had a knee blowout and a race. Had to have a hip replaced like and then most recently with pulmonary embolisms. And there’s no history of any of this. And like, what does a drug do? Short term, it saves your life. Okay. What does it do long term? No one knows. So again, you just hope for the best and lead as healthy a life as possible. 

Why I share my testicular cancer story

I’ve just watched too many people wait too long to incorporate certain modalities into their treatment, because they’re exceptionally desperate. They would go, “Okay, I’m going to do this treatment schedule.” I’m like, great, what about these other things? “Oh no, my this or this person said, don’t do that.” And they’re afraid of what their family is going to say. If they do something, I’ll quote an alternative. And that’s why I got into the mindset piece, because we all have the same amount of time. We all have the same resources. It’s why one person or group of people is doing something and another isn’t. But when you have the treatment, stop the quote. Conventional treatments aren’t working. You’ve been denied all the testing, or how about a clinical trial? And what level are you at? And then, like, people just have so much hope for a test or a clinical trial that they just. That’s what that’s what’s going to save me. No. You’re going to save yourself. 

What I want others to know

We’ve all been put here for a purpose, and if you don’t know what your purpose is, go find it now because you do not know how long you have. People all have this notion that they’re going to grow up and enjoy life and play sports and maybe get married. Maybe have a family, grow old, retire, and enjoy their golden years. Sorry, that’s a fairy tale. There’s a ton of stuff that happens in between there. There’s a ton of amazing things. There are a ton of things that are going to scare the hell out of you, that are going to be disappointing. There’s going to be death. There’s going to be pain. There’s going to be injury, both mental and physical. Live in the present moment. Don’t wait to have the conversation. That’s important. Don’t wait to call that best friend or that loved one and say, “Hey, I just want to know how you’re doing. We should get together.” Because one day you’re going to get a call that goes, “Oh, that person’s not around anymore.” Or they went through this thing and got diagnosed with cancer. And they do these amazing things in life, why weren’t you doing that beforehand? You don’t need to go through a struggle to have a story. Just serve people at your highest level and learn as much as you possibly can about the things you’re interested in, and never stop being a better version of yourself. We’re never going to be perfect, but that’s not life. It’s about enjoying the things you screwed up and sharing those so someone else doesn’t make those mistakes because there’s no right or wrong way of doing it. It’s just your way.

Thank you for sharing your story, Shawn!

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More Testicular Cancer Stories


Hugo T., Testicular Cancer (Non-Seminoma), Stage 2B



Symptom: Pea-sized lump on right testicle

Treatments: Surgery (removal of right testicle, lymph node resection), chemotherapy

Steve L., Testicular Cancer (Non-Seminoma), Stage 3C



Symptoms: Grape-sized tumor on neck; hip and pelvis pain; tumor on right testicle

Treatments: Chemotherapy, surgery (removal of right testicle, lymph node resection, and tumor dissection in the neck)

Mikael H., Testicular Cancer (Non-Seminoma), Stage 1



Symptoms: Fatigue, one swollen testicle

Treatments: Surgery (removal and reconstruction), radiation, hormone therapy

Rick H., Testicular Cancer (Seminoma), Stage 1



Symptoms: Noticed one testicle larger than the other, dull pain

Treatments: Orchiectomy (surgical removal of one testicle), chemotherapy
Categories
Chemotherapy Endometrial Cancer Hysterectomy (laparoscopic) Immunotherapy Patient Stories Surgery Treatments Uterine

Kandie Refuses to Give Up: A Mother’s Journey Through Stage 3 Endometrial Cancer

Kandie D. endometrial cancer

Kandie Refuses to Give Up: A Mother’s Journey Through Stage 3 Endometrial Cancer

Can you imagine being a loving mom of three daughters, being given an endometrial cancer diagnosis, almost immediately having a hysterectomy, and starting chemotherapy? Kandie’s stage 3c1 grade 3 endometrial cancer diagnosis in September 2024 left her little time to process everything. Her only symptom was nonstop bleeding for over a year, which led to anemia and multiple transfusions. 

Interviewed by: Keshia Rice
Edited by: Chris Sanchez & Jeff Forslund

Kandie D. endometrial cancer

Despite the physical and emotional challenges of endometrial cancer and her treatments, Kandie’s self-identity and mental health remain central to her healing. She admits feeling less whole after her surgery, but she’s working on self-love by embracing small joys like walking, calm breathing, and lighthearted reality TV. Her motivation comes from her family, especially her daughters and young grandson, who give her purpose and hope.

Transitioning to immunotherapy, Kandie is grateful for a proactive medical team that supports her needs and plans. She encourages other women to advocate for themselves, push for answers, and seek support from online communities. Kandie is focusing on making memories with her loved ones and looks forward to hopefully being NED by March 2025.

Watch Kandie’s video and read her story below. You’ll learn more about:

  • What she learned from a year of unexplained bleeding
  • How Kandie balances treatment, family, and self-love
  • The emotional side of living with endometrial cancer
  • Why advocating for your health can save your life
  • Finding hope and gratitude in the middle of endometrial cancer treatment
  • Name: Kandie D.
  • Age at Diagnosis:
    • 54
  • Diagnosis:
    • Mismatch Repair Deficient (dMMR) Endometrial Cancer (Endometrial Adenocarcinoma)
  • Staging and Grade:
    • Stage 3c1 Grade 3
  • Symptom:
    • Daily vaginal bleeding for over one year
  • Treatments:
    • Surgery: laparoscopic hysterectomy
    • Chemotherapy
    • Immunotherapy
Kandie D. endometrial cancer
Karyopharm Therapeutics

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

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

Table of Contents
  1. About Me
  2. When I First Noticed That Something was Wrong
  3. My Cancer Was Finally Diagnosed — Along With a Genetic Condition
  4. I Found a Good Medical Team
  5. I Worried for My Family
  6. My Treatment for Endometrial Cancer
  7. Program Highlight: Advanced Endometrial Cancer: Making Informed Treatment Decisions and Accessing Clinical Trials
  8. I Trust Doctors, Though Some Seem to See Women Differently
  9. I’m Finding Strength and Gratitude in Many Ways
  10. My Family is the Source of My Motivation
  11. My Message to Other Women: Push for Answers
  12. Dr. Slomovitz Is Also Hopeful for the Future
  13. I’m Hopeful and Determined to Make Memories With My Family

… hang in there. It can get better.

Kandie D. – Endometrial cancer patient

About Me

My name is Kandie. I was diagnosed in September 2024 with endometrial cancer, stage 3C1, grade 3.

I’m a mom of three daughters. Family and friends know me as someone who always puts others first.

Your life changes automatically right away, once you find out that you have cancer. I’ve been on a roller coaster.

I went from my endometrial cancer diagnosis to having a hysterectomy to undergoing chemotherapy right away. I had no time to prepare. I literally found out what grade I was on November 21 and started chemotherapy on November 25.

Kandie D. endometrial cancer
Kandie D. endometrial cancer

When I First Noticed That Something was Wrong

The only real symptom I had was nonstop bleeding — I bled literally every day for more than a year. I thought in July 2023 that I was going to start menopause, because I hadn’t had my period for two months prior. I was all excited. But I started bleeding in July and didn’t stop.

I was angry, very angry. Every doctor I called would tell me, “You need to be treated. You need to stop bleeding. Come in and we’ll give you a PAP smear.” And I would explain to them and the nurses, and then answer the phone and stuff. My bleeding isn’t stopping. That’s the problem.

It got to the point that I became anemic and needed blood transfusions. And I still couldn’t find answers. And when I finally did learn the answer, it wasn’t at the doctor’s office.

My Cancer Was Finally Diagnosed — Along With a Genetic Condition

I didn’t have any of the symptoms that I assumed you would have with cancer. So I was very shocked. But the scariest thing for me was that I had seen my results before I talked to my doctor, and they had stuck them on MyChart before talking to me.

At first, doctors said I had “regular” cancer. But I had genetic testing, and it revealed something that could complicate my treatment plan: deficient mismatch repair or dMMR.

This means that my DNA repair system isn’t working properly. It leads to more cancer cells. My body doesn’t know how to fight cancer cells or kill them.

I Found a Good Medical Team

So I struggled to get diagnosed in the beginning, but later on, I was thankfully able to get a good medical team. This really made things easier.

I didn’t ask them a lot of questions because I was overwhelmed by everything. But they were very proactive about working with me. The nurse coordinator would come in and explain all the medicines I could have. They also had me talk to the navigation person, who, in turn, told me whom I could speak with if I needed help with nutrition. Another doctor asked me if I needed financial assistance and offered to explain my insurance to me. 

So they were really good at pre-guessing what I was going to need help with and might ask questions about.

At first, doctors said I had “regular” cancer. But I had genetic testing, and it revealed something that could complicate my treatment plan: deficient mismatch repair or dMMR.

Kandie D. – Endometrial cancer patient

I Worried for My Family

I was scared for my three daughters. I feared that my endometrial cancer was hereditary and that I had passed it on to them. I didn’t want my daughters to have to go through what I was about to go through. 

And so before I had my hysterectomy, I asked my daughters to do genetic testing immediately. We were relieved to find out that my cancer wasn’t genetic, and they didn’t have it.

But I had to deal with another worry after that. I began to wonder if I would be here for my grandkids. I just had a new one last July — am I going to see him grow up? I really want to. So I made a goal for myself, that I would be around for him until he’s at least five years old, until he has a concrete memory of me.

My Treatment for Endometrial Cancer

I did six rounds of chemotherapy. I’m now doing immunotherapy.

The physical effects of treatment have been tough, but it’s also taken quite an emotional toll. Society expects you to be a beautiful person and to have babies and raise a family. But since my insides were taken out, I’m no longer a whole person. I guess I no longer feel like a whole woman.

Kandie D. endometrial cancer
My Endometrial Cancer Story Continues Below

Program Highlight: Advanced Endometrial Cancer: Making Informed Treatment Decisions and Accessing Clinical Trials

Top gynecologic cancer experts say it’s life-changing, maybe life-saving, for people to know more about what’s going on in treatment options, which are growing in endometrial cancer.

Endometrial cancer is the most common gynecologic cancer, and for many people, it comes with more questions than answers. In this honest, expert-led conversation, Dr. Brian Slomovitz, Director of Gynecologic Oncology and Co-Chair of the Cancer Research Committee at Mount Sinai Medical Center in Florida and The Patient Story’s Stephanie Chuang break down the latest in diagnosis, treatment options, and how to have better conversations with your care team.

Learn about early warning signs, key risk factors like obesity and PCOS, and how biomarker testing and clinical trials are changing the standard of care — especially for advanced and recurrent disease.

Topics:

  • Warning signs and symptoms to watch for, including post-menopausal bleeding
  • Risk factors that raise your chances, like obesity, PCOS, and Lynch syndrome
  • How specialists use biomarker testing to personalize care
  • Treatment options beyond chemotherapy, including immunotherapy and hormone therapy
  • What clinical trials are, who they’re for, and how to access them — even remotely
  • Why it’s okay (and important) to get a second or third opinion
Brian Slomovitz

Dr. Slomovitz: Forget about getting rid of chemotherapy. Imagine if we got rid of surgery as well. How great would that be for a patient?

The Importance of Awareness and Early Detection

Dr. Slomovitz: If there are any signs of abnormal bleeding, we really want to educate our patients to go see their healthcare providers. Oftentimes, it could be nothing. It could be a polyp. It could be a premenopausal woman’s abnormal period. But some cancers and precancers can be diagnosed. 

Understanding the Risks and Causes

Dr. Slomovitz: The best way to cure cancer is to prevent cancer… There’s a large subgroup of patients who have the typical standard endometrial cancer or something called endometrioid endometrial cancer. This is really driven by obesity. Obese cells, fat cells in the body, produce estrogen. So the heavier a person is, the more likely they are to have higher estrogen levels. And it’s the estrogen that feeds the lining of the uterus, the endometrium, which could transform it into a cancer or pre-cancer.

More women now die from endometrial cancer than from ovarian cancer. We used to think of ovarian cancer as the silent killer.

The standard of care at first is a hysterectomy. After a hysterectomy, we find about 70 to 75%, maybe 80% of patients are diagnosed with stage 1 disease. It’s those other patients that we’re more worried about, the patients with lymph node involvement, or spread to the cervix, or spread to other parts of the abdomen. Those are the advanced-stage patients, and they require systemic therapies. For some of those patients, the recurrence rates could be quite high. Patients with advanced recurrent disease recurrence rates could be 60, 70%.

Some of the high-risk histologies, such as the p53-abnormal group, are the ones that are set up for recurrent disease as well. And we need to come up with more systemic treatment options.

Why Specialist Care Matters

Dr. Slomovitz: We’re not going to rest until we get to 100% cure rates. And I think it’s important to talk to your doctor about what clinical trial options are there, what clinical research is going on. It’s important always to get the right or correct opinion. That means it’s okay to get second or even sometimes third opinions.

A Revolution in Treatment

Dr. Slomovitz: One of my career goals is to get rid of chemotherapy. The response rates of chemotherapy, even in the first line of about 50- 52%, the duration of response or the progression-free survival is only about 14%. Those numbers aren’t good enough. 

Considering Clinical Trials

Dr. Slomovitz: It’s OK to get standard of care. I don’t think clinical trials are for all patients, but I think some patients are super motivated and want to improve their treatment options.

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

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

Back to My Endometrial Cancer Story
Kandie D. endometrial cancer

I Trust Doctors, Though Some Seem to See Women Differently

If treatment can prolong my life, I don’t have concerns. I trust the doctors.

I have to say, though, that some doctors look at us differently. Women sometimes are seen as exaggerating or not knowing what we’re talking about, or being unsure. In my opinion, most doctors don’t take us as seriously as they should.

I’m Finding Strength and Gratitude in Many Ways

I’m working to find strength, be grateful, and maintain my mental health.

I do a lot of walking and calm breathing. I do fun things like watching reality TV. Watching things that I know are staged helps me get out of my head and out of that everyday loop. It helps me be grateful for what I do have.

My Family is the Source of My Motivation

When I have down moments, my family members are the ones who motivate me the most. My immediate family, my husband, my daughters, my grandma, my son-in-law, and my grandsons. We’ll tease each other, and it breaks the ice if I’m having a hard time. They know they can hug me.

I’m working to find strength, be grateful, and maintain my mental health.

Kandie D. – Endometrial cancer patient

My Message to Other Women: Push for Answers

If you know something’s off, if you’ve been bleeding for way too long, push for the gynecologist to look at you. Push hard. Tell them no if you need to. You’re not taking no for an answer. You’re coming in.

If you’re newly diagnosed with endometrial cancer, hang in there. It can get better. Join the groups that are on social media. The women there will always help you get through it. 

Dr. Slomovitz Is Also Hopeful for the Future

He believes newer treatment options will give all of his patients longer and fuller lives.

Kandie D. endometrial cancer

The future’s bright. We’re becoming better and better with our treatment options. It used to be that women with endometrial cancer would get one or two lines of therapy, and then the disease was so aggressive, they’d succumb to their disease. Now patients are getting three, four, or even five lines. And as we move forward, we’ll get more and more lines of therapy with the latest and greatest therapies. 

Dr. Brian Slomovitz – Director, Gynecologic Oncology;
Co-chair, Cancer Research Committee, Mount Sinai Medical Center
Kandie D. endometrial cancer

I’m Hopeful and Determined to Make Memories With My Family

I’m hoping to be NED in March 2025 so that I can be done in April.

And after that, I’m excited to hopefully be able to take vacations.

Karyopharm Therapeutics

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

Kandie D. endometrial cancer
Thank you for sharing your story, Kandie!

Inspired by Kandie's story?

Share your story, too!

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Mary M. stage 4B endometrial cancer

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Categories
Chemotherapy Ewing Patient Stories Sarcoma Surgery Treatments Tumor excision Wide Local Excision

The Nickel-Sized “Bruise” That Changed My Life: Sophie’s Stage 2 Ewing Sarcoma Story

Sophie F. Ewing sarcoma

The Nickel-Sized “Bruise” That Changed My Life: Sophie’s Stage 2 Ewing Sarcoma Story

Sophie’s story begins with a strange, round robin’s-egg–blue spot on her upper arm that didn’t hurt, fade, or otherwise behave like a normal bruise. Pushing for answers led to a diagnosis of soft-tissue Ewing sarcoma, a rare kind of cancer, at age 31. Initially, a doctor thought it was nothing serious. But Sophie trusted her gut and insisted on further checks. Her persistence led to an ultrasound, a surgery, and eventually the devastating phone call: it was cancer. She had never even heard of Ewing sarcoma before that day.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Sophie’s experience emphasizes the importance of self-advocacy, particularly for adolescents and young adults. She quickly learned that waiting months to be rechecked wasn’t an option. Pushing for answers, she navigated multiple appointments, imaging scans, and pathology reviews until she received a clear diagnosis. Along the way, she also discovered the emotional toll of rare cancers like Ewing sarcoma, namely fear, uncertainty, isolation, and how it can feel when life halts while friends and peers continue moving forward with weddings, new jobs, and other milestones.

Sophie F. Ewing sarcoma

Sophie’s treatment involved 14 cycles of chemotherapy over 10 months, split between inpatient and outpatient sessions, plus a second surgery to secure clean margins after the first removal proved insufficient. Uncomfortable side effects like fatigue, nausea, food aversions, and hair loss became part of her new reality. But she found ways to manage the cycles and focus on what she could control. She realized that mental health was as important as physical health, and leaned on family and close friends who stayed present through the hardest days.

She now has no evidence of disease (NED), and continues regular scans and bloodwork to monitor her health. Sophie hopes her story encourages others to listen to their bodies, speak up if something doesn’t feel right, and seek specialists for rare cancers like Ewing sarcoma. She also wants to shine a light on the psychological impact of cancer in young adults: how it reshapes expectations, identity, and hope, and stresses that research into rare cancers must continue to grow.

Watch Sophie’s video and check out the transcript of her interview. You’ll find out more about:

  • The little round blue “bruise” that turned out to be something far more serious
  • How one young woman pushed for answers when doctors said to wait six months
  • How Sophie’s story evolved from a casual doctor’s visit to a life-changing cancer diagnosis in just weeks
  • The emotional toll of facing mortality at 31 while friends moved forward with life milestones
  • Hard-won lessons on self-advocacy, resilience, and finding strength in the face of Ewing sarcoma
  • Name: Sophie F.
  • Diagnosis:
    • Ewing Sarcoma
  • Age at Diagnosis:
    • 31
  • Staging:
    • Stage 2
  • Symptom:
    • Appearance of a nickel-sized, blue, and solid but soft and spongy mark on upper left arm
  • Treatments:
    • Surgeries: cyst excision surgery and wide excision surgery
    • Chemotherapy
Sophie F. Ewing sarcoma
Sophie F. Ewing sarcoma
Sophie F. Ewing sarcoma
Sophie F. Ewing sarcoma
Sophie F. Ewing sarcoma
Sophie F. Ewing sarcoma
Sophie F. Ewing sarcoma

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

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

Transcript of Sophie’s Interview
  1. My name is Sophie
  2. I only had one symptom
  3. I finally saw my primary care doctor
  4. The day of surgery
  5. How I reacted to my diagnosis
  6. My treatment plan
  7. The side effects I experienced
  8. I currently have no evidence of disease
  9. The hardest part of my diagnosis
  10. What I want others to know

My name is Sophie

I was diagnosed with Ewing sarcoma, soft tissue, in 2022.

I only had one symptom

One day back in fall 2021, I was looking in the mirror and caught a glimpse of the side of my left upper arm, and it looked like there was a bruise there. But it was weird-looking, just slightly different. It was not faded and didn’t have that kind of blue-yellow color. It was pure blue, almost like robin’s-egg blue. And it was perfectly symmetrical, perfectly round, and the size of a nickel. It wasn’t sore to the touch, it didn’t hurt at all. It wasn’t raised. When I touched it, I could move it back and forth under the skin. It was moving as a solid, if that makes sense.

Within a week or two of noticing this strange bruise, I went to the doctor, because a bruise typically goes away pretty quickly and also hurts. I knock into stuff at the time, but this was significant enough that I should have remembered what I did that caused it.

The doctor I saw, who wasn’t my PCP but who was in the practice, barely examined it. I don’t even know if she touched it. She looked at it and basically said, “It looks fine, you’re young and healthy, and you have no other symptoms, so maybe it is a bruise. Or a hematoma, or a fatty deposit. But I’m not really worried about it. If in six months, it’s still there, you can come back.”

So I went home. But it didn’t sit right with me that she barely checked it out. More importantly, it didn’t make sense with what I was seeing and feeling. So, within two weeks after that visit, I called the doctor’s office back and said, “Look, I need to get back in sooner than six months. I’m not comfortable with someone not taking a closer look at this.” But I was told that there were no slots available for six months.

I finally saw my primary care doctor

She thought it was weird that the mark hadn’t gone away already. She suggested getting an ultrasound to get more information. So I went to get one. That took a couple of weeks.

The ultrasound results were those of an abnormal cyst. So it looked like a cyst, like a fluid-filled sac. But what was abnormal about it was that it had blood flow, which cysts usually don’t have. So I asked her what that meant, and she said kind of could mean a variety of things. She said, “I’m still not concerned, but we have a couple of options moving forward. We can watch it for a few months, you can do an MRI to get more information, or you can just have surgery to get it removed.” At this point, it had been four months since I first noticed it. So I went, “I just want surgery.” 

I didn’t know anything about the steps you’re supposed to take if it’s something suspicious, because I had not dealt with that before. And she never said, “I think this might be cancer.” 

The day of surgery

Finally, in February 2022, I went and got it removed by a regular surgeon. She wasn’t worried about it after the surgery. She called and said, “It went well. It was mostly just blood in the cyst. And it didn’t look weird. I’m not concerned about it or anything, but I’m sending it to pathology as part of the process.” I thought it was no big deal since I felt fine and it was just a small incision.

But a week later, she called again and said, “I’m really sorry. I was wrong. It’s actually cancer. We don’t know what type of cancer it is yet. We’ve sent it to pathology here in Syracuse. And they’re not coming up with a definitive diagnosis. It could be anything from blood cancer to skin cancer to Ewing sarcoma, which is our best guess.” I’d never heard of Ewing sarcoma before. She added, “Don’t look that up, don’t freak yourself out. We’re sending it to Memorial Sloan Kettering in New York City, and they’ll run their pathology.” 

But knowing that it was cancer, I got set up with an oncologist and a surgeon and everything. It was three weeks before I got my official diagnosis on March 1, 2022, and they turned out to be correct. It was Ewing sarcoma. 

How I reacted to my diagnosis

I was shocked, for sure. I was terrified and distraught. I think that phone call where she told me I had cancer was the most scared I’ve been throughout the entire experience. Not only was I hearing those words when I just turned 31, but they didn’t even know what it was specifically. 

I was with my friend when I got the phone call. It was on a regular weekday afternoon. I immediately called my parents, and they came over, and my friend left. It traumatized her, too, understandably. I cried for a good while. More than anything, I was just terrified not just of cancer but because I was imagining all the things that it could be and what that could mean for me. There wasn’t any information yet about how aggressive it was, if it was localized, or even what category it fell under. So, yeah, the initial reaction wasn’t great.

My treatment plan

So the treatment plan was typical for Ewing’s sarcoma. It was very specific and targeted. It covered five chemotherapy drugs over the course of eight months to a year, depending on how the patient’s body reacts. 

So for me, it was 14 cycles total, seven of which were inpatient and seven outpatient. The outpatient was typical chemo, where you go to an infusion room and you get an IV with chemo along with other people. The inpatient ones required me to stay at the hospital for a week at a time and get two or three drugs a day for five days in a row. I would have two days of the outpatient chemo, and then, two weeks afterward, five days of the inpatient chemo, and then two weeks later, and moving forward, that had to be spread out a little bit more because my body started taking longer to recover. In total, it ended up taking me about ten months. 

Also, with Ewing’s, if it’s operable, you do surgery. Mine was, because it was in the soft tissue. Typically, this is done about halfway through, after, say, the first six cycles of chemo and before the remaining cycles. For me, when I had the initial cyst removal, they didn’t get clean margins because they weren’t operating as if it were cancer, just a cyst, so they didn’t take a lot of the area around the cyst. I needed to have that second surgery, wide excision surgery, in the midst of my chemo. And that was basically to take an extra inch around where the original tumor had been to get clean margins.

The side effects I experienced

The chemo was very challenging because I had a whole host of side effects. The main one was extreme fatigue. I would be insanely exhausted after chemo. After outpatient chemo, I would usually have two or three days when I would crash and then just be down for five or six days. When I was in inpatient chemo, it would be five days in a row. Maybe the first or second day wouldn’t be so bad. But by the third day, I would be spent. And that would last for up to a week after I got home. I would sleep about 12 to 14 hours a day and still be exhausted. I would get up to try to force some food down and then go back to sleep. 

Other side effects I faced were nausea and lack of appetite. I only actually vomited once during my entire treatment, but that said, I still did get severely nauseated. I also had zero appetite and really did not want to eat. I actually had a food aversion; it would really gross me out to see food. And I also lost all my hair on my entire body. I usually don’t think about that side effect because it was expected. I knew it was going to happen. Still, though, it was not an easy thing to go through. I had other side effects too, like mouth sores once in a while, and some gland pain. 

Once I spaced out my treatments, which took place after the third or fourth round, a lot of these side effects actually eased up. And I never needed to go back to the ER. I learned how to manage the various cycles and their side effects. It got a little bit easier for me after that.

I currently have no evidence of disease

I was told that for patients who have Ewing’s and maybe all other sarcomas, they don’t use the phrases “in remission” or “cancer-free.” They use NED, “no evidence of disease” or “no evidence of active disease.” I was actually considered NED after my second surgery, about six months before the end of my treatment, because the evidence of disease was the positive margins I had after the initial cyst removal surgery. So once they got clean margins, it was technically dead. My NED anniversary is in July. 

But I still had to do the rest of the chemo even though I was declared NED. That’s the protocol for Ewing’s sarcoma. And every three months for the first two years afterward, I would get scans, like a scan of my arm where I had the cancer and a scan of my chest, too, because if the cancer comes back or metastasizes, those are the most likely places it will go — my arm where the original one showed up, or my lungs. So, scans every three months aside from bloodwork to see if my body is recovering the way it’s expected to or if there’s anything new and weird that they need to investigate.

The hardest part of my diagnosis

There are so many things that were hard, some of which continue to be hard. I don’t want to downplay how tough chemo was, for example. I mean, it was like a living hell a lot of the time. But even harder than that was the psychological and emotional toll that cancer took and continues to take. 

Any time you’re told that you have cancer, it’s absolutely awful and life-changing, and not the way you want it to be. But I think finding out and being told at a relatively young age was just that much harder. I was in the prime of my life. People around me were getting engaged, getting married, having kids, buying houses. And I was stuck in time. It felt like everyone else was advancing, while I was standing still — or fighting for my life — and finding out whether or not I was going to die. It really messed with my perception of my own life. What I thought my life was going to be, what I expected for myself, my assumptions, like I had assumed I would be healthy until I was old. 

My mom is actually a breast cancer survivor; ten years this month. She was 60 when she was diagnosed. So I did have experience with these things, but she was 60 and I was half her age when mine was diagnosed. I never saw it coming. That was really challenging. That was the hardest part, when I had to face my own mortality at a young age, when my peers didn’t need to. It was just a given for them, like they were healthy and would live long lives. And that’s how it used to be for me, too, but it was taken away all of a sudden. That was not easy at all.  

In terms of who I am now versus who I used to be, it’s sort of the same. I used to be innocent about my expectations for my life and my hopes and dreams, and how I wanted my life to look. It’s different now. 

What I want others to know

I have one piece of advice, but it has two parts. 

One would be a logistical answer: advocate for yourself. Don’t take no for an answer if you think something is weird or wrong, even if you have health anxiety, even if you’re anxious to begin with. Push away, because you never know, and it’s better to be safe than sorry. It’s better to have something looked at and then find out it’s nothing rather than having someone brush you off or not have it checked at all and then find out it’s something serious and even potentially at a later stage. Push for answers, push for yourself, take care of yourself. Make sure that people are listening to you. Get a second opinion,  especially if you are diagnosed with cancer, ideally somewhere where there’s a specialist. There was no sarcoma specialist at my local hospital, and I had to go for a second opinion at MSK to get the peace of mind that I was getting the right treatment. 

The second is not logistical: cancer is tough, but you’re tougher. There are a lot of platitudes like that, but you really are stronger than you think you are. I used to be really squeamish and scared of blood and needles and doctors’ offices. And one of my first thoughts was, “How am I going to get through this? I don’t thrive in this environment. I’m scared of it. I hate being sick. What if I can’t do this?” And the answer is, you just have to. And so you will. You can do many more things than you think you’re capable of, simply because that’s the situation you find yourself in. And it’s what’s in front of you. Just take it one step and one day at a time. Look at what you need to do to move from one place to another. And eventually you’ll be in it, and hopefully you’ll be done with treatment and living a cancer-free life. Make sure you lean on your supports. Find the people in your life who are going to stay and who are going to help you. They’ll help you get through anything.

Sophie F. Ewing sarcoma
Thank you for sharing your story, Sophie!

Inspired by Sophie's story?

Share your story, too!

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Sophie F. Ewing sarcoma

Sophie F., Ewing Sarcoma (Soft Tissue), Stage 2



Symptoms: Appearance of a nickel-sized, blue, and solid but soft and spongy mark on upper left arm

Treatments: Surgeries (cyst excision surgery, wide excision surgery), chemotherapy
...
Categories
Cervical Cancer Chemotherapy Patient Stories Treatments

AJ Shows the World the True Face of Stage 4B Cervical Cancer

AJ H. cervical cancer

AJ Shows the World the True Face of Stage 4B Cervical Cancer

AJ shares her story about living with stage 4B cervical cancer. Her sincerity and the drive behind her mission shine through: to encourage other women to prioritize their health and get a Pap smear.

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

She openly admits that, like many women, she explained away her early symptoms — bloating, cramping, pain, and bleeding during intimacy — because she was busy and assumed they were signs of something else. It wasn’t until the symptoms became impossible to ignore that AJ discovered that she had cervical cancer, which, moreover, had already spread extensively. Reflecting on this, she gently but firmly urges other women not to ignore or dismiss their own warning signs.

AJ H. cervical cancer

AJ also zeroes in on the emotional side of living with cancer. She notes that we often hide the hardest parts from our loved ones. She wants to be the face of cervical cancer so that others can understand what their loved ones might be silently enduring.

Transitioning between the raw realities of treatment and the deep love for her family, AJ talks openly about her long chemotherapy days, side effects such as nausea and weight loss, and the twice-daily injections that leave her stomach covered in bruises. But she also highlights small positives with a touch of humor, like how showers now take only three minutes since she shaved her head on her own terms.

Community support has been a lifeline for AJ. Friends and campground neighbors have brought her meals, helped with her dog, and offered other gestures big and small that remind her that she isn’t alone. Her faith has also become an anchor, giving her courage to keep moving forward even on the hardest nights.

AJ’s message is clear and empowering: listen to your body, get your Pap smear, and don’t hide your reality to make others more comfortable. By sharing her experience, she’s offering both a warning and a warm invitation to women everywhere: take care of yourself, advocate for yourself, and trust that speaking openly about cervical cancer can create understanding and change.

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

  • Discover why she believes that showing the real face of cervical cancer can change lives
  • Learn about the quiet emotional struggles families rarely see, and why she shares them
  • Find out how one RV-loving grandmother balances chemo, courage, and community support
  • Learn AJ’s heartfelt advice on the Pap smear that could save your life
  • Discover the small yet empowering ways she keeps control through her cervical cancer story
  • Name: AJ H.
  • Diagnosis:
    • Cervical Cancer
  • Staging:
    • Stage 4B
  • Symptoms:
    • Pain in ovaries
    • Discomfort and bleeding during intercourse
    • Consistent bloating in abdomen
    • Cramping
    • Severe back pain
  • Treatment:
    • Chemotherapy
AJ H. cervical cancer
AJ H. cervical cancer
AJ H. cervical cancer
AJ H. cervical cancer
AJ H. cervical cancer
AJ H. cervical cancer
AJ H. cervical cancer

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

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

Transcript of AJ’s Interview
  1. My name is AJ
  2. How I knew something was “off”
  3. How I found my care team
  4. My treatment plan
  5. My side effects from chemo
  6. How I cope living alone
  7. My support system
  8. I look at life differently now
  9. What I want others to know

My name is AJ

I’m from Arizona. I was diagnosed with stage 4B cervical cancer on July 16th, 2025.

I am a full-time RVer. My travels have been limited recently due to my diagnosis, but for the past couple of years, I’ve been traveling through the United States, and I’ve done some incredible things. I’m an avid reader, a bibliophile, if you will. Absolutely love books, the texture, the smell. Horses are a big passion of mine and my family. 

I had 12 horses. When I actually did what I had done, I had a ranch, I created a non-profit, and I would rescue the horses from slaughter, rehab them, train them, and then military and first responders with PTSD or injuries could come out for equine therapy. So when I went full-time RVing, I gave my horses to some people who were frequent visitors for equine therapy so they could continue what was helping them so much. Though it was very costly, it was impactful.

And I’m a good cook. I can make anybody fat.

I have seven grandbabies.

How I knew something was “off”

As females often do, I dismissed many of my symptoms. I blamed them on other things. Even though I’m in menopause, my ovaries hurt, I’m bloated, and I’m cramping. All of those were symptoms that I wasn’t paying attention to, pain and bleeding during intercourse.

I had had a series of three surgeries. I was kicked in the abdomen by a horse, my fault, not hers. And for the past almost three years, I would contact the surgeon and say, “I’m bleeding during intercourse.” And it went from just spotting to a stage where it would be all the way down to my knees and dripping off my thighs. I ended up thinking I had kidney stones. So I went to the ER, and the first doctor immediately told me, “This is stage three cancer.” And I thought, “Well, how do you know, you didn’t even do a biopsy?” And he referred me to another physician at GYN, and she was absolutely incredible. And she immediately, as soon as she put the spectrum, she said, “This is stage three, probably stage four cancer.” 

I was referred to a GYN oncologist, and she too had the same comment. She said she would almost bet her career that it was stage four cancer. So I had the PET scans, and they confirmed that it was stage four B cervical cancer that had metastasized to my cervix, abdominal lymph nodes, the mediastinum, the entire mammary chain, the lymph nodes in the neck, the trachea, and the voice box. 

To the point where I noticed them and explained them away for three years, there were things along the way, but I explained them away like all women do, and that’s part of what I want to tell women is don’t explain away your symptoms because that’s what they are.

The doctor had said that it was stage three, possibly stage four. Then she sent me to a GYN oncologist, and she too said the same thing. And then it was confirmed with the PET scan.

I was deaf. It’s not something you want to hear. And my first thought was about my children and my grandchildren and leaving them behind. My grandbabies are so young. My mother passed away when I was 11, and I have minimal memories of her.

I wanted to fight for my kids and grandkids, so we could have more time together and create more memories. It’s all been so overwhelming. 

How I found my care team

Each one of my children is in a different place throughout the United States, and each one of them said, “You need to come here.” I’m in a very small town, and they were worried about the medical care that I would receive. And it’s actually the complete opposite. Here, I have received incredible treatment. I’m treated like a person and not a patient, a case, or a chart. They remember my story when I walk in. They remember my children’s names. They’ve just been so incredible, and I am forever grateful.

My treatment plan

There wasn’t a lot of choice. I have one way of treating this. My GYN oncologist took my case to a board of 12 specialty oncologists, and they collectively created the most aggressive chemotherapy plan. 

It is very daunting because it is such a harsh plan. But even after the first treatment, I had a CT scan, and in one area, they saw a 60% shrinkage. And in another area, they saw a 54 % shrinkage after just one treatment.

I have chemotherapy every three weeks. I go in the day before to have my blood work done to see that I am healthy enough to have the chemotherapy treatment. My chemotherapy treatment is anywhere from eight to 10 hours. It goes through my chemo port. And the next day I go in for more hydration and or anti-nausea medication. And then I get this injection into my belly, and it goes into my bone marrow to increase the white blood cells to help my body fight the cancer. But a side effect of it is that it makes your bone marrow swell inside your bones. And because your bones can’t accommodate that swelling, it’s incredibly painful. It feels like every single bone in my body is breaking. And then I’m down for about four or five days. My body shakes uncontrollably. 

Thankfully, knock on wood, I have not thrown up from the chemotherapy, not to dismiss that I do feel very nauseous. And for those four or five days, my only nourishment is protein drinks or meal replacement drinks. I can’t eat too much, and every doctor visit that I go into, it’s not a matter of if I’ve lost weight, it’s a matter of how much weight I’ve lost. And it’s typically about two pounds every time I go in. And I had 11 doctor’s appointments this week in four days. So that’s a lot of weight that I’ve lost. I was a sugar fiend. I can’t say no to dessert. I’ve probably lost close to 20-25 pounds so far.

They initially set the plan for 35 rounds of chemotherapy. We’re going to do another PET scan after the sixth treatment and see if my body has responded well enough. I do have a chemotherapy appointment next Tuesday, and we’re going to do a CT scan a couple of days later just to check the progress. 

Hopefully, my cervix shrinks enough. The cancer on my cervix is so great that my cervix and the cancer are almost coming out of me. You can feel it, you can see it if you were to look in there. It’s not something you have to search for. It’s that advanced. And it causes problems, like if my bladder gets full, it presses on my cervix, which causes pain. If we do have enough shrinkage, then hopefully we can do a complete hysterectomy.

My side effects from chemo

I’m battling some blood clot issues right now. So I have to give myself injections into my belly twice a day. And then they also put me on Coumadin. There’s a measure of safety, it’s from one to four, and they want you between two and three. When we first started, I was at 1.0. I was checked today, and I’m at 1.1, so it’s not coming up like it should. 

I also had an echocardiogram today. I do have some fluid around my heart caused by the chemotherapy drugs. Thankfully, it’s only one centimeter of fluid. So, there is no need to inject a needle into me to drain that fluid at this point. But that is one of the side effects of chemotherapy.

Two days after chemo, I’m in the ER with some kind of problem from it. The weight loss, and being so lethargic. I’m so weak from the shot that I can’t walk without support. have to hold on to something as I walk, which is a greater fear now that I’m on so many blood-thinning medications. It just steals everything from you. It stole my hair, but I did decide to cut it when it started to fall out. That was the only thing I had control over. I cut my long, beautiful blonde hair after my second treatment. And about five days after that, I ran my fingers through my hair, and it was so much hair. So. I went to a hair salon, and these ladies were so encouraging. They stood right beside me, one held my hand, and she was just giving me so much empowerment. She was telling me that I’m Guy Jane. Just so much power that they gave me. 

They never charged me for one haircut. When they shaved my head, they did leave a little buzz, and then that started getting really patchy, and I didn’t want to look like a guy with the ring around my head. And the hairstylist came to my home and shaved that hair off. She didn’t have to do that. That was completely unexpected, and it was a personal moment. Your hair is not only a part of your feminine identity. It’s part of your individualism. And my hair has always been part of my security blanket. And oftentimes I’ll go to twirl my hair or flip it out of my way, and it’s not there. 

But I will say there are some benefits. My shower now takes three minutes unless I turn around like a rotisserie chicken in there. I don’t have to blow-dry it. I don’t have to worry about gray hair. I can roll the windows down in my vehicle. There’s a lot of positive. There’s positive in everything. You just have to look.

Cancer steals everything from me, but I’m not allowing it to steal my dignity or my battle. This is my battle, and I will win it.

How I cope living alone

I’m completely watching over myself. But my dog, as crazy as it sounds, has indicated things to me. 

One evening, he just sat bolt right up out of bed, unexpectedly, came over and sat on my belly. And I checked my heart rate, and it had jumped from the 80s up to 136. And I had to go to the ER to have that checked, and that’s the fluid around my heart now. 

But it helps when caring for myself, thankfully, that my RV is not too large. It’s been a challenge. It’s scary at times, and there are days when I don’t have the physical ability to get up out of bed due to the chemotherapy. And I wish that I had somebody here to encourage me and help me. 

My support system

I’m currently in Cody, Wyoming.I am leaving this area in a week after I recover from my next chemotherapy appointment, and I will be closer to my family. It’s kind of like my triangle of love. Each one of them will be about three hours from me, so they can help me, and I’ll be surrounded by a lot of my friends as well. 

The camp that I’m at has been completely amazing, and I couldn’t have done this last round of chemotherapy without them. They set up a meal delivery system. So every night, somebody brings me a home-cooked meal. With the gluten, I can’t have vitamin K, so no green leafy vegetables, anything green. And they’ve been very mindful of that. They come and walk my dog for me. They bring me bags of ice with their neuropathy in my hands and feet, the nerves in my hands and feet that were once silent after chemo, they’re blazing, and they go numb, and they tingle, and they hurt, and they throb, and it’s the oddest sensation because you don’t know which foot is in front of the other. So I have to be very careful and I have to watch my feet to make sure I am picking them up and moving them. 

I look at life differently now

When you have devastating medical diseases, it makes you question your mortality. 

Something happened the other night. I still don’t know if I believe it myself. I was standing at the sink, and I was giving myself an injection. And as I pulled the needle out, I just broke down. I was crying. I was shaking. I didn’t know if I would be able to do this anymore. My stomach is just covered in bruises from these twice-a-day injections. And I prayed. And I asked God for strength and courage. And in that moment, I felt this warm embrace from behind me, an instant calm. And this peace just washed over me. The tears that were escaping immediately went away. It was the most incredible thing, and I’m not sure if I fully have the vocabulary to describe it. Or if it was my mind saying, “You’re going to be okay, or if it was a higher being saying you’re going to be okay. But since that time, I can give myself the injections with courage and strength.

Before, it would be a good minute to stick the needle into my stomach. And now I can just pop it right in and do the medication. 

It was the most incredible feeling. There was peace and love and warmth and strength and courage in an instant. It was… I can’t fully describe it. There are no words to fully describe it. I felt the arms wrap around me from behind. And it was so warm and comforting. It was magical, wonderful. I can say is it was magical.

What I want others to know

Don’t explain away your symptoms or your pains. It could not be your period. It could not be cramps. Think of all these symptoms. Get a pap smear. I didn’t do it. I was so busy with my life. I owned 12 companies. I had four children. I can get it later. If I had had a pap smear regularly, as recommended, this could have been detected at an earlier stage, one, two, or three. And now I’m battling for my life. I want people to know that you don’t have to hide your disease to make other people more comfortable. I chose not to wear a headscarf. I chose not to wear a wig. And I noticed that I’m big on eye contact, and when people walk by, I’ll look at them, and they’ll divert their eyes. They’re not used to seeing this, and part of my journey is showing the real side of battling cancer. It’s not glamorous. It’s tough. It’s a fight, and we as patients or cancer victims, I guess, the word would be. We try to shelter our family from that pain, from that misery, and we don’t explain our fears. I don’t sleep at night because I’m afraid of dying during my sleep. These are some of the things that I want to share with the public: Cancer is real. Don’t hide it. Tell people how you’re feeling.

My chemotherapy plan is very aggressive, and the medications that I’m on are not covered by my insurance. Each is almost $45,000 just for the drugs alone. I’ve tried to get funding and financial assistance, but I have government healthcare from the military. I can’t get that financial assistance. Even though they don’t pay the bills for it, I’m still responsible for $45,000 in medication every three weeks. So be your own best advocate. Search out everything that you can. Look for programs that can help you. Look for financial assistance. Call the companies that produce the drugs. They might have assistance through them, but even though you think your insurance is great, it doesn’t cover many things, which is unfortunate.

AJ H. cervical cancer
Thank you for sharing your story, AJ!

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