Micheal Finds Hope with an Inoperable Brain Cancer by Joining a Clinical Trial
Micheal opens up about his experience with inoperable brain cancer. His story started in early 2025, when he began feeling random waves of nausea and dizziness, often after waking up or lying flat. At first, he thought he’d eaten something bad. Even his local doctor suspected simple balance issues caused by dislodged ear crystals. But when the right side of his face gradually weakened and his eyes began to twitch, he knew something more serious was going on.
Interviewed by: Nikki Murphy
Edited by: Chris Sanchez
After several MRIs, doctors confirmed that Micheal had a diffuse midline glioma (DMG) in his brain stem, a rare, aggressive type of brain cancer that, in his case, can’t be removed surgically. Hearing the diagnosis left him numb, yet he leaned on his family, faith, and humor to cope. His mom strongly encouraged a second opinion, which led them to Mayo Clinic, where he underwent a biopsy. While the procedure left him with facial weakness, partial numbness in his left arm, and some vision changes, Micheal remains mobile and independent.
Treatment has involved Micheal joining a clinical trial that’s focused on short rounds of radiation. Instead of doing six straight weeks of radiation, he receives two weeks at a time and then goes under observation. This approach allows his body to recover between treatments, which helps him both physically and mentally. He has had to deal with side effects like nausea, dizziness, and hair loss, but he’s grateful for the chance to keep moving forward.
Thanks to his experience, Micheal’s outlook on life has grown deeper and more meaningful. He takes time to appreciate small moments, like walking and noticing the world around him. He keeps his mental health in check by staying hopeful, joking with his mom, and setting goals for the future, like finally earning a pilot’s license when his vision improves. The advice he offers others is simple but powerful: never take life for granted, help others when you can, and always be the best version of yourself.
Micheal reminds everyone that having brain cancer doesn’t erase the possibility of joy, love, and purpose. Hope, for him, is waking up each day with the belief that there’s still life to live and a future to work toward.
Watch Micheal’s video and scroll through the transcript of his interview below to:
- Learn the subtle symptoms that can signal something far more serious than dislodged ear crystals
- Understand how Micheal turned a life-changing diagnosis into a story of hope
- Find out more about the clinical trial that gave him a chance to keep moving forward
- See the small daily moments that have brought Micheal joy in the face of brain cancer
- Read his simple yet powerful advice for living with purpose
- Name: Micheal J.
- Diagnosis:
- Brain Cancer (Diffuse Midline Glioma)
- Age at Diagnosis:
- 25
- Grade:
- Grade 4
- Symptoms:
- Vertigo
- Eye nystagmus
- Weakness on the right side of the face
- Dizziness
- Treatment:
- Radiation therapy, as part of a clinical trial
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
- My name is Micheal
- When I first noticed that something was wrong
- The moment everything changed
- My mom pushed for a second opinion
- What my biopsy did to me
- I decided to go on a clinical trial
- The side effects I’m experiencing while I’m on the clinical trial
- It’s hard to accept that surgery isn’t an option for me
- Cancer has changed my outlook on life
- Hope keeps me motivated
- My biggest advice to others
My name is Micheal
I was diagnosed with brain cancer, diffuse midline glioma, back in April of 2025.
When I first noticed that something was wrong
I first started noticing symptoms back in early February.
My family and I went to Minneapolis, Minnesota, to go to the Mall of America. We also saw a hockey game while we were up there. And that’s when I started waking up in the mornings and started randomly feeling very, very nauseous for some reason. I just thought I had eaten something bad. After we got back from Minnesota, I ended up calling in for an entire week, because I couldn’t lie flat any longer without getting a really bad dizzy spell. It was as if I stood still and spun in a circle and just stopped, and just let my equilibrium go.
I realized I couldn’t just keep calling it in. So I went to my local doctor down here. They marked it up as my ear crystals, the little ones in the ear that help out with balance and everything, getting dislodged. They gave me some medication for it, and it helped. But with me being a diesel mechanic and lying flat underneath trucks all the time, a creeper was not a whole lot of fun. I would get up off it and go straight to the trash can, essentially. I decided I couldn’t stand it anymore and realized there had to be something more that was going on.
Around the end of February or the start of March, the right side of my face started to get weaker, and I couldn’t smile or blink very well any longer on that side. I contacted my doctor about it, who took a look and said, “What I’m going to do is send you to the ENT, just to find out for sure if it’s your ear crystals or if it’s something more.” I went up to an ENT doctor in South Dakota, who ended up finding my eye nystagmus. If I looked completely to either side, my eyes would bounce back and forth.
They were the ones who told me I should get an MRI done. But I didn’t actually get it done until closer to April. That’s sad to say, but it’s just how things went.
The moment everything changed
When I went to the hospital and got an MRI, that’s when they found a mass.
We don’t have a whole lot of neurosurgeons down here in Sioux City. So they sent me to Mercy Hospital, where they have a neurologist. I did another MRI there, and they wanted to do surgery right away to get it out. I stayed the night. But the next morning, they said, “We’re going to send you up to Omaha, because we can’t really tell where this thing is. And they have better MRI machines there, too. And we don’t want to just go in and start trying to cut out something we can’t see.”
So they took me up to Omaha and did another MRI. And that’s how they found that the tumor was inside my brain stem. It’s called a DMG, which is a diffuse midline glioma. Essentially, it’s completely smooth. It has no borders, which means that it’s fused to my brain stem.
When they first walked in and told me about it, I was honestly very numb at first. I didn’t know what to think. And then I did something that scared many of the doctors and staff. I took off all the medical stuff that they hooked me up to so they could read my heart and everything. And then I looked at my mom and said, “I’m going for a walk.” I had my best friend, Kevin, and my wife, Becca, with me, and we ended up walking down to the church in the USMC. There, it all hit me, and I just broke down.
It took a lot to come to acceptance. It’s not a great prognosis, but we all had plenty of faith.
My mom pushed for a second opinion
I love my mom to death. She’s the one who said, “No, I can’t accept this.”
So after I went on my little journey, they had a couple of doctors come and find me, and they told me, “Hey, you can’t just walk off like that.” So we ended up coming home to Sioux City and my mom reached out to a couple of her friends who had cancer. They said, “Get to Rochester, go to Mayo, and get a second opinion there.” So my mom asks me out to breakfast the next day, at a little breakfast place here called Johnny Marr’s Really Good Breakfast, and she said, “Let’s just go up to Mayo, you know, they’re the best in the U.S. right now. What harm could it do?”
So we drove 4.5 hours that day and went into the emergency room, and we were there for a while. I think we got up to Rochester at around 8 p.m., and we didn’t leave until almost 2 or 3 a.m. They had a neurosurgeon in the ER there, named Sarah, a very nice lady. She said, “I’m going to send a personal message to Dr. Parney, one of the top neurosurgeons here, and we’re going to get something figured out in two days or so.
We got a call from Mayo saying that they wanted to schedule a biopsy. We set the appointment, went back to Mayo, and met Dr. Parney — he’s a very nice man. He said, “I can do the biopsy. There’s about an 85% chance of you coming out completely normal, like nothing’s happened. There’s also a 15% chance of some damage, and less than a 1% chance of death.”
I signed some papers, and he did the biopsy. They ended up grabbing two samples.
What my biopsy did to me
I experienced some aftereffects when I first woke up. I couldn’t move the right side of my jaw. Obviously, there was some Bell’s palsy going on on that side of my face. My right eye doesn’t close very well; it goes about halfway down and then stops. I can’t really move my right eyebrow very well. It took a little bit to regain some of the movements in my face. I can finally chomp down like normal now.
I have other aftereffects elsewhere in my body. My left arm, from about the pectoral muscle all the way to my fingertips, is still kind of numb. I’m starting to regain some feeling in my fingertips.
I’m still able to walk, talk, swallow — all those things that I would normally be able to do. It’s just those aftereffects mainly.
I decided to go on a clinical trial
The treatments for diffuse intrinsic pontine gliomas or DIPGs, which are another kind of brain cancer that can appear in the brainstem, and DMGs are fairly limited. There are a lot of ongoing clinical trials. My radiologist, Dr. Breen, told me that photon radiation is the best type of radiation therapy for these types of tumors.
When Dr. Breen and I were talking about treatment, he gave me options. The first was that I do the full six weeks of radiation in one go and see what happens. The second was that I take part in a clinical trial he organized.
The clinical trial would initially involve just two weeks of radiation, and then the medical team would go on observation after that. If the tumor grows or spreads, they hit it with another two weeks of radiation. This approach essentially allows you to prolong the treatment. If you do the entire six weeks, I believe you’ll need to take six months to almost a full year off just to let your body recuperate and heal.
When Dr. Breen brought up these options, my mom asked him, “If this were happening to your child, which one would you choose?” He said, “I would go for the clinical trial. A full six weeks of radiation on a very sensitive area of the body might have pretty significant effects.”
So we opted for the two weeks of radiation and to go in once a month for an MRI. We’d see how the tumor would do, and if it progresses or spreads, we’d hit it with another two weeks of radiation.
They’ve also been talking about this particular pill, but my doctor still has to talk to other doctors and see if I’m qualified for it.
The side effects I’m experiencing while I’m on the clinical trial
After the first two weeks of the trial, I was very nauseous. I was quite nauseous during the radiation as well. And the first couple of weeks after radiation are rough. They had told me in advance that the tumor might swell a little bit from the treatments, like a boxer’s eye that gets hit too many times. But they added that it would just be an initial thing, and then the swelling would just subside.
The first week I came home after the initial two-week period, I felt a lot of pressure in my head. I also had dizzy spells, which were pretty bad that first week. My hair also started falling out a little in the back of my head, where they were applying the radiation. But as time went on, my condition improved. I got fewer dizzy spells. My eye nystagmus has gotten better.
Thankfully, through all this, I’ve been able to keep my mobility as normal as possible. And overall, things have been okay.
It’s hard to accept that surgery isn’t an option for me
It’s hard. It’s very hard. I won’t lie to you.
I joined some Facebook support groups and interacted with other patients who didn’t have what I had, but had successfully had their tumors surgically removed. I feel that if the tumor’s removed, I would have a little bit more of a fighting shot, because there would be nothing there that would be pushing up against the optic nerves. I do know that they can recur, of course.
It’s still hard for me, but I’m slowly accepting it. I just keep praying and telling myself that I’ve been in my body for 26 years, whereas this thing has only been in my body for just a couple of months. I’m going to make sure this tumor dies.
Cancer has changed my outlook on life
I do have a better outlook on life now. It’s sad to say, but sometimes, it takes a life-changing event to make you realize the beauty of life in general. You get so stuck in your daily routine, from home to work and vice versa. Lately, I’ve been taking time to stop and smell the roses. Just going for walks outside, even at work, where we have this enormous parking lot for our trucks. Every morning, I’ll walk all the way down that lot and then walk all the way back to the shop, just looking around and admiring things.
I had always wanted to be a pilot. Obviously, with my vision having been affected, that’s been put on hold for a little bit. But that being said, I have a lot of options regarding what I can do. I’ve always been big on taking things apart and putting them back together, which is why I became a diesel mechanic. Way back when, I thought that I would do that for a while and then work on getting my pilot’s license. And then this happened.
But I’ve resolved that when my vision comes back, I’m going to go for my pilot’s license. It’s just that a couple of things have been stepped up a little bit more.
Hope keeps me motivated
At first, before my diagnosis, “hope” was just a word. You know, you hope for this or that to happen. But now, hope has taken on a different meaning for me. It’s what brings me some joy in my life. It’s what gives me the confidence to keep going.
It means a lot to me right now. It’s the reason I wake up in the morning. It’s the reason I keep fighting — the hope of living a long life, the hope of going to be able to spend time with my family.
It might seem like a joke, but my mom and I have been cracking jokes lately. For example, I told her, “I hope I bury you first before you bury me.” And she goes, “In all honesty, I hope the same thing.”
That’s what hope means to me. Being able to think about the future like there’s no tumor in my head. Being able to think about having kids, seeing my grandkids grow up. That’s what hope has meant to me lately.
My biggest advice to others
Don’t take life for granted. I definitely did before. I was one of those people who would just go, “Oh, I’ll do it later.” Don’t let a life-changing event, whether it be cancer, traumatic brain injuries, or whatever it is, let you put your life on hold because you think you have time.
Nobody ever expects to get cancer. I certainly didn’t. I was healthy, there was nothing wrong with me, and my bloodwork was all fine. And it all started just by getting dizzy, because I couldn’t lie flat on my back.
If you’re able to help someone out, go help them out. If you see that person on the side of the road with a flat tire and who doesn’t know how to change it, go help them. What’s the harm in helping them?
Always try and be the best version of yourself that you can be. Why live your life being a jerk? You can always take that with you. Nobody can ever take your personality away from you.
Inspired by Micheal's story?
Share your story, too!
More Brain Cancer Stories
Biomarker Testing Gave Lysa New Hope with Stage 4 ROS1+ Lung Cancer
I was 40 years old, very busy, still raising my kids, and working and going to school at the same time when I was diagnosed with stage 4 ROS1+ lung cancer. Lysa’s experience highlights her resilience and serves as a prime example of what self-advocacy can lead–in her case, lead to a new therapy.
At 40, she experienced severe mid-back pain that she and doctors initially thought was just a pulled muscle. Later, however, her symptoms worsened, leading to a shocking diagnosis: lung cancer that had already spread to her spine.
Interviewed by: Nikki Murphy
Edited by: Chris Sanchez
Though her lung cancer was initially responsive to chemotherapy, Lysa was determined to learn more about it. This pushed her to reach out to fellow lung cancer patients on online patient communities. She also learned about biomarker testing, which empowered her to seek a second opinion, ultimately undergoing surgery solely to obtain tissue for comprehensive biomarker analysis. The result? She discovered she was positive for the ROS1 mutation. This qualified her for targeted therapy that significantly improved her quality of life.
When her non-small cell lung cancer progressed, Lysa didn’t settle. She advocated for herself again, enrolling in a clinical trial that has kept her stable. Thanks to targeted therapy and clinical trials, she’s celebrated many milestones, including her daughter’s graduations and the birth of her first grandson, as well as other important moments with family and friends.
Lysa’s stage 4 ROS1+ lung cancer experience shows how critical biomarker testing and clinical trials are in expanding treatment options. Her story is a testament to the power of self-advocacy, community support, and the importance of never giving up on seeking better care.
Watch Lysa’s video and read her story below to:
- Find out how her back pain revealed her life-changing diagnosis
- Learn why biomarker testing became Lysa’s game-changer
- Discover how a targeted therapy and a clinical trial gave her more time with her loved ones
- See how Lysa’s self-advocacy with ROS1ders changed her stage 4 ROS1+ lung cancer care
- Meet the woman who thrives beyond her diagnosis
- Name: Lysa B.
- Age at Diagnosis:
- 40
- Diagnosis:
- Non-Small Cell Lung Cancer (NSCLC)
- Staging:
- Stage 4
- Mutation:
- ROS1
- Symptom:
- Severe but intermittent back pain
- Treatments:
- Chemotherapy
- Radiation therapy
- Targeted therapy, including through a clinical trial
- Surgeries: lung resection, metastatic spine tumor surgery
Thank you to Nuvalent for supporting our patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
- About Me
- When I First Noticed That Something Was Wrong
- The Moment Everything Changed
- How I Learned About Biomarker Testing
- Learning I was ROS1+ and Taking the Only Treatment Option Available Then
- I Joined a Clinical Trial When My Stage 4 ROS1+ Cancer Progressed
- Targeted Therapy Has Changed My Quality of Life for the Better
- Anyone With Lungs Can Get Lung Cancer
- My Advice to Others
You think you’re doing what you can to take care of yourself. I quickly learned that none of that really matters. If you have lungs, you can get lung cancer.
Lysa B. – Lung cancer patient
About Me
Hi, I’m Lysa.
I was diagnosed with stage 4 non-small cell lung cancer with an ROS1 mutation.
When I First Noticed That Something Was Wrong
I had just graduated from college. I was 40 years old, very busy, still raising my kids, and working and going to school at the same time.
I started having back pain. It wasn’t a typical lower back pain that you’d get by straining yourself doing something, though that’s what I kept telling myself. It was a little bit higher, right in the middle of my back.
My husband and I took our daughter to California for a vacation, and we visited SeaWorld in Disneyland. There were two nights when I would lie down, the pain was so bad that I felt like I couldn’t breathe right, and I couldn’t sleep. My husband said, “We have to go to the E.R., we have to figure out what’s going on.”
We went to the E.R. around midnight. There, they were concerned about my kidneys because of the back pain. But my kidneys were fine, so they thought I’d just pulled a muscle. They gave me a few muscle relaxers and pain medicines to get me through the weekend, and they told me, “Follow up with your doctor when you get home.” And the next day we went to Disneyland for 12 hours.
I agreed that I must have just pulled a muscle. Everything seemed to be fine. I was 40. I was healthy. I was a runner. I was in great shape at the time, or so I thought. So you shouldn’t ever believe that cancer is not on your radar.
The pain was intermittent, so I was able to ignore it and push through. I was taking a lot more Tylenol at that point, icing the area, and getting massages. But it wasn’t getting better.
I went on a vacation to see my family in Kentucky, and the pain got so bad coming home from the airport. I was traveling alone, and I remember calling my mom, crying, and telling her, “I can’t even walk through the airport right now.” She went, “Get a wheelchair, just get home. We’ll take care of it.”
The next morning, we went to the E.R. again, this time to an E.R. near where we lived. They did multiple tests, a CT, a full MRI of my entire spine to try and see where the pain was coming from, as well as a chest X-ray.
I was in great shape at the time, or so I thought. So you shouldn’t ever believe that cancer is not on your radar.
Lysa B. – Lung cancer patient
The Moment Everything Changed
Several hours later, the E.R. doctor came in and told us, “You have to sit down. It appears that you have stage 4 lung cancer that’s already spread to your spine.”
I had just lost a friend to lung cancer about five months before that, and she had only been 43. So I immediately thought, “Oh my God. Who’s going to raise my kids?” My son was 19, but he still needed me. My daughter was 11.
You think you’re doing what you can to take care of yourself. I quickly learned that none of that really matters. If you have lungs, you can get lung cancer. Unfortunately, sometimes you’re just dealt a crappy hand.
How I Learned About Biomarker Testing
Right after I was diagnosed, I found an online forum where I started talking to other patients. Mostly, I just connected with them and tried to seek support. And through that forum, I learned so much about lung cancer.
It’s not one disease. You don’t just treat it one way. And there are biomarkers, which are proteins that drive your cancer to grow. They are specific to certain lung cancers, and they typically tend to be in younger women, mostly under 50.
I did talk to my oncologist about it, but I was having a great response to chemo at the time. So she just said, “When the time comes, we’ll look into that.” I was okay with that for a while, and it wasn’t until I had progression about 15 months later that we decided to try and do another biopsy to get enough tissue to do biomarker testing.
At that point, my tumor had a lot of scar tissue around it. It was in a hard-to-access spot. We had done two needle biopsies through my lung, which were inconclusive and didn’t have enough tumor DNA actually to tell if there were any biomarkers or not. So my oncologist wanted to try another chemotherapy, and at that point I said, “There’s got to be something better than this.” And I switched oncologists.
Learning I was ROS1+ and Taking the Only Treatment Option Available Then
Within a couple of weeks, I was seeing a new doctor, Dr. Vogelsang. He pushed for me, and that validation helped me realize that this man was going to help me do whatever I needed to do for however long I wanted to do it.
At the time, it took several weeks to get my results back. It was stressful, and I was trying to be hopeful. Plus, I was recovering from surgery.
My phone rang at 10 p.m., and I don’t normally answer my phone if I don’t know who’s calling me, but I answered, and it was Dr. Vogelsang. He said, “We’ve got great news, your results are in. And you’re ROS1-positive.”
He was super excited about it, and I was too. I knew that meant I was eligible for targeted therapy. I wouldn’t have to do chemo anymore. So it was great. It was literally a game-changer for me.
By the time I found out what my biomarker was, it was 2013. I had already been diagnosed with and living with lung cancer for 18 months. I started getting nervous around that time; it was like I was feeling I was on borrowed time. I wondered when it was going to quit working.
I was eligible for targeted therapy. I wouldn’t have to do chemo anymore… It was literally a game-changer for me.
Lysa B. – Lung cancer patient
I Joined a Clinical Trial When My Stage 4 ROS1+ Cancer Progressed
We added chemo to my targeted therapy in the hope that it would get me at least to the end of that year, seven or eight months away, before I might start on that drug. Well, I remained stable with that combination for another five years, so I was able to stay on my first targeted therapy for ten years.
By the time I progressed again after those five years, I had a new biopsy. I did have new metastases in places I’d never had before, and it seemed to be fairly aggressive. It went from nothing on a scan to not significant to more than doubling in size two months afterward. I knew we had to do something quickly.
We did a biopsy on my 50th birthday. That was fun. And based on those results, I decided to go on a clinical trial. So in June 2023, just over two years ago, I started a phase one clinical trial that I had to travel to Tennessee for.
I’m still in that trial. I actually went again just last week. I just got my scan results back, and I’m still stable. So I’m extremely happy about that.
I feel pretty good on this drug, which is nice. And I don’t have to do chemo anymore. Because of this drug, I’ve lived long enough to see my first grandson. The drug is in pill form. I’m able to have my scans at home.
Targeted Therapy Has Changed My Quality of Life for the Better
When I was diagnosed, my youngest was 11, and she was in fifth grade. Honestly, my first goal was to see her graduate from high school. I wanted to give her that much, at least, to get her there. Of course, I was the loud lady at her graduation. I was so excited and crying and bawling.
I’ve since gotten to see her graduate from college. I have just had our first grandson this year. And my son was 19; he was older, but he still needed some help, and I have been able to see him flourish and find his way in this world.
My husband and I love to travel and eat. I have a great friend group here. We do trivia every week. My parents live two miles from me; I just hung out with my mom all day the other day.
I know I’m lucky that I can do those things. I’ve always been such an on-the-go person, the type who has to take care of everything right now. I can’t go to bed till the dishes are done, that sort of thing. I need structure, and I might have been a little extreme.
Now, I don’t care if there are dishes in my sink. I try not to let external things get me down. And I focus on trying to find the joy in every day.
My biggest happiness is when I’m with my family and my dogs. I love my dogs.
I try not to let external things get me down. And I focus on trying to find the joy in every day.
Lysa B. – Lung cancer patient
Anyone With Lungs Can Get Lung Cancer
One of the first questions many people ask you when you tell them you have lung cancer is, “Did you smoke?” It used to make me angry, because it felt accusatory. But I really think when people ask that question, if they’re nonsmokers, they’re trying to be like, “Oh, well, that’s why you got it.”
I honestly don’t think they come from a bad place, but it makes you feel bad, like you have to defend yourself. My grandmother died of lung cancer, and she was a smoker her whole life. Can we blame her for her death?
Everyone deserves access to care. We have lung cancer. It doesn’t matter how we got it. And there are many risk factors out there, so many that we don’t even know how to correlate them, though we do know that they contribute to lung cancer.
I have friends who are vegetarians, yoga instructors, lifelong runners, and so on. People who thought they did all the right things. And yet we still got lung cancer. I still ended up getting stage 4 ROS1+ lung cancer.
Cancer doesn’t discriminate.
You do not have to be alone.
Lysa B. – Lung cancer patient
My Advice to Others
There are patient groups for most of these biomarkers. There are maybe a dozen online. Many of them have websites. You can look them up and join them. You do not have to be alone.
They are a huge source of not only support but also knowledge. Like the ROS1ders in particular. It is scientifically vetted by researchers, as well as all of our information about the drug options. What works for us, what doesn’t, how to deal with side effects. There are patient stories on there. There is a large community out there that many people might not know exists. I am proud to be part of ROS1ders.
These patient groups aren’t just for other patients. We’re seen and invited to medical conferences now. Doctors and researchers collaborate with these groups to do better for the people in our community. So please reach out to them if you have a biomarker. It’s so important.
Special thanks again to Nuvalent for its support of our independent patient education content. The Patient Story retains full editorial control.
Inspired by Lysa's story?
Share your story, too!
More Non-Small Cell Lung Cancer Stories
Emily N., Non-Small Cell Lung Cancer, EGFR+, Stage 4 (Metastatic)
Symptoms: Chronic cough, persistent post-nasal drip, shortness of breath while doing simple activities, changes in voice, rib pain
Treatments: Chemotherapy, targeted therapy (tyrosine kinase inhibitor), radiation therapy
Loryn F., Non-Small Cell Lung Cancer, HER2+, Stage 4 (Metastatic)
Symptoms: Extreme fatigue, persistent back pain, chest pain, joint pain in the feet, hips, legs, shoulders, and elbows
Treatments: Chemotherapy, radiation therapy (foot and elbow to help with mobility), antibody-drug conjugate
Shauna D., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)
Symptom: Persistent dry cough following a cold
Treatments: Targeted therapy (tyrosine kinase inhibitors), radiation therapy
Allison Z., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)
Symptom: Severe back pain
Treatments: Targeted therapy (ALK inhibitors), radiation therapy
Wyatt D., Non-Small Cell Lung Cancer, KRAS+, Stage 4 (Metastatic)
Symptoms: Intense migraines, vision loss, muscle cramping in the hands, fainting
Treatments: Chemotherapy, immunotherapy
Choosing Life on Her Terms: Pippa’s Stage 4 Vulvar Cancer Story
Pippa shares her stage 4 vulvar cancer experience. Diagnosed in January 2023, her early symptoms were subtle, including persistent soreness and discomfort that eluded quick fixes. From the start, she leaned into her intuition, seeking answers and refusing to dismiss what her body was telling her. Eventually, she was diagnosed with stage 1 vulvar cancer — a diagnosis that shifted to stage 3 and, ultimately, stage 4 once it was found to have spread.
Interviewed by: Carly Knowlton
Edited by: Chris Sanchez
Soon, Pippa had to deal with surgeries, including a total pelvic exenteration. Repeated hospitalizations and side effects of her vulvar cancer treatment took their toll. She describes physical discomfort, mental exhaustion, and adjustments to routines, but always underscores how grateful she is to have received unwavering support from her husband, family and friends, and her employer as well.
Pippa was at times overwhelmed by the treatments for her rare cancer, especially when options dwindled after recurrence. Despite the recommendation for more intensive chemotherapy, Pippa chose quality of life over harsh intervention, a defining moment in her experience. New routines emerged, built on patience and realistic expectations. She learned to walk again, embraced ostomy care, and shifted to slower, more deliberate daily rhythms.
Beyond her treatments, Pippa also works to raise awareness for vulvar cancer. She helps other women navigate early symptoms and speaks openly about the mental and emotional challenges of living with such a diagnosis. She emphasizes that “there is life with cancer” and that advocacy, community, and small joys, be they dog walks, time spent with loved ones, or moments in nature, offer resilience through uncertainty.
Pippa’s stage 4 vulvar cancer experience helps rewrite what it means to live fully with cancer and reminds us of the power in listening to one’s body and advocating for care. Watch her video and read through her transcript below. You’ll learn about:
- Trusting your instincts and advocating for yourself, because persistent discomfort deserves immediate attention
- How the support of loved ones, community, and compassionate medical professionals dramatically impacts mental and emotional well-being
- How treatment exhaustion and physical limitations demand patience and realistic expectations; routine tasks become part of recovery and adaptation
- The meaning and dignity to be found in living with cancer
- How Pippa transformed her experience into advocacy, raising awareness for vulvar and vaginal cancers and empowering others to seek care and speak up
- Name: Pippa S.
- Diagnosis:
- Vulvar Cancer (Metastatic)
- Age at Diagnosis:
- 47
- Staging:
- Initially Stage 1; progressed to Stage 3; currently Stage 4 and terminal
- Symptoms:
- Persistent itching
- Red patch of skin inside left labia that turned into a wart-like lump
- Bloody discharge
- Treatments:
- Surgeries: wide local excision, lymphadenectomy, total pelvic exenteration, colostomy surgery, urostomy surgery
- Radiation therapy
- Chemotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
- Hi, I'm Pippa
- Surgeries, tubes, and recovery challenges
- Complications after surgery: infections and skin issues
- The first warning signs
- Fast-track diagnosis: a rare cancer identified
- Staging and unexpected test results
- Radiotherapy and chemotherapy: intensive treatment
- Recurrence: facing stage 4 and new surgeries
- The largest surgery: total pelvic exenteration
- Living with side effects and adjusting to daily life
- The importance of support from family, friends, and my employer
- The impact on my mental and emotional health
- Shifting identity and living meaningfully
- Monitoring and looking ahead
- My advice for patients and raising awareness
Hi, I’m Pippa
I was diagnosed with vulvar cancer in January 2023.
I’m a big foodie. I love cooking and baking, and I work in the food industry. I enjoy walks, hikes, and seeking out new restaurants. I have a passion for travel, exploring new places rather than relaxing by the pool, and I’m a dedicated Lego collector.
Surgeries, tubes, and recovery challenges
After my last surgery, I had an NG tube inserted through my nose into my stomach to feed me, because my abdomen had gone through so much trauma that I couldn’t tolerate any food. I was violently sick with everything I ate, so I was tube-fed for about ten to fourteen days. It was extremely uncomfortable. One day, I became so sick that I vomited the tube up and refused to have it put back in.
Complications after surgery: infections and skin issues
After one of my surgeries, I developed an infection. During the night, I must have scratched myself and introduced bacteria, leading to cellulitis. My neck and face became dry and peeled repeatedly, leaving raw skin. This happened about five times, and I ended up hospitalized. At one point, strangers thought I had a terrible sunburn, but a kind security guard recognized it was cellulitis and offered advice that made me feel genuinely cared for. That really made me feel very loved.
The first warning signs
The first red flag was a sore, itchy patch inside my left labia that became increasingly uncomfortable. Over-the-counter creams and medications didn’t help. It eventually formed a wart-like lump, and even lidocaine couldn’t relieve the pain. I experienced walking, standing, and sitting discomfort, bleeding, a bloody discharge, and pain during sex. Eventually, I no longer wanted to have sex at all because it was so painful. That’s when I scheduled a doctor’s appointment.
Nothing was getting rid of it, and I just kept persevering. I was just so uncomfortable.
Fast-track diagnosis: a rare cancer identified
Thankfully, my doctor had seen vulvar cancer, this rare cancer, before, and immediately suspected either an infected cyst or cancer. Antibiotics did nothing, so she referred me for a biopsy. Even before the diagnosis, I knew in my heart it was cancer.
The biopsy confirmed early-stage vulvar cancer, which wasn’t a surprise at this point. The biopsy itself was extremely painful and left me in agony for days.
Staging and unexpected test results
It was initially diagnosed as stage 1; my scans didn’t show cancer elsewhere. Surgery removed the tumor and some lymph nodes, but two of those nodes were cancerous, so I was told it was now stage 3.
I was shocked but not surprised. My gut instincts had been correct from the start.
Radiotherapy and chemotherapy: intensive treatment
I received 25 rounds of radiotherapy and five rounds of chemotherapy over five weeks; Monday through Friday for radiotherapy, and a full day at the hospital for chemo every Wednesday.
Recovering from these treatments was exhausting. I did most of it alone because I just didn’t have the energy for conversation. Netflix kept me company during those long hospital days.
Recurrence: facing stage 4 and new surgeries
By January 2024, symptoms reappeared on my right labia and near my back passage. I had further biopsies, surgery in March, and again in July, each time taking more suspect tissue. Soon after, scans revealed the cancer had reappeared internally in my right groin and in my lung.
Because previous radiotherapy ruled out more radiation and more surgery was considered too risky, the only remaining option was high-dose chemotherapy. I declined, wanting to avoid spending my remaining time very ill and instead focus on quality of life.
The largest surgery: total pelvic exenteration
In October 2024, I had a total pelvic exenteration, a rare and massive surgery. Most of my large bowel, my back passage, bladder, vagina, and uterus were removed.
I now have two stomas, a colostomy and a urostomy bag, and while I initially worried about them, they are simply part of my daily routine.
Recovery was extremely hard. I had to relearn to walk and couldn’t leave the hospital for eight weeks. Daily tasks left me exhausted, but I had support from nurses, my husband, family, and friends.
Living with side effects and adjusting to daily life
Fatigue and loss of appetite linger. I have chronic pain, osteoarthritis in both hips, and lymphedema in my leg. My pace of life has slowed tremendously. My dog has been vital for my daily motivation.
I get chronic fatigue now. So I can’t do as much as I could.
I focus on what matters and let go of perfectionism in housework. Getting through each day, ensuring my family is cared for, is my priority.
The importance of support from family, friends, and my employer
My husband has been unwavering. He has been an absolute rock. I couldn’t have done this without him. Seeing his pain has been the most difficult part.
My parents, despite their own health issues, visit and support me regularly. My friends, colleagues, and even my employer have gone above and beyond, providing gifts, visits, and patience as I adjust to ill-health retirement.
The impact on my mental and emotional health
I sought counseling, especially after being told the cancer was terminal. My biggest fear was leaving my husband and how he would cope.
I have learned to make peace with uncertainty and to focus on living each day as fully as possible. I’m at total peace with it now. It’s going to happen when it’s going to happen.
And until that point, I’m just going to keep living my life.
Shifting identity and living meaningfully
I’ve learned to savor the small things — dog walks, nature, time with my husband.
My identity has shifted; I’m told I’m strong and brave, though I don’t always feel it.
Raising awareness for vulvar cancer gives me purpose, and I have built a strong online community. Supporting others gives me pride and motivation to keep sharing and reaching women who might be afraid to talk about gynecological health.
I’m incredibly proud of the awareness that I’m raising. There is life with cancer.
Monitoring and looking ahead
I no longer have regular appointments, but I can contact my care team or palliative nurse as needed.
I am considering joining early-stage clinical trials, not for my own benefit but to help those who come after me, since direct treatments for vulvar cancer are lacking.
For now, I focus on making great memories, financial stability for my husband, and empowering women to check themselves and seek care quickly.
My advice for patients and raising awareness
If you notice symptoms, get checked. Don’t ignore discomfort or delay care. Even if a symptom is embarrassing, moments of awkwardness are worth it for your future.
Just go and get it checked out. What’s a few minutes of embarrassment over the rest of your life?
Be your own advocate and empower those around you. Vulvar and vaginal cancers need more attention and openness.
Inspired by Pippa's story?
Share your story, too!
Related Cancer Stories
No post found
I was Given 18 Months–5 Years Ago! Tammy’s Stage 4 Metastatic Breast Cancer Story
This is Tammy’s story about life with metastatic breast cancer. She opens up about how her life shifted dramatically because of her experience. One day, she was walking five miles, and the next, she was in a wheelchair because cancer had eaten through her femur.
Interviewed by: Nikki Murphy
Edited by: Chris Sanchez
Tammy first faced breast cancer in 2014, after a misdiagnosed lump turned out to be far more serious than expected. After surgery, chemotherapy, radiation, and hormone therapy, she carried on with her life. But in 2020, pain in her hip and leg led to a devastating diagnosis of metastatic breast cancer. She shares how hard it was to process the prognosis, especially when her first oncologist gave her only 18 months to live. Rather than accept that, she became her own best advocate. She sought six different opinions, learned about treatment lines, and found a medical team that listened to and supported her.
Throughout her experience, Tammy emphasizes the importance of self-advocacy. She explains how staying informed about treatment options, asking questions, and seeking second (or sixth) opinions have been life-giving choices. Each progression of her metastatic breast cancer led to new therapies, such as hormone therapies, and she highlights the urgent need for research and clinical trials. In fact, she’s a passionate supporter of clinical trials because the drug currently keeping her disease in check didn’t even exist three years ago. This, she says, is why funding research matters; not only to extend lives, but also to improve the quality of life for people living with stage 4 disease.
Tammy also offers her insights on the emotional side of living with metastatic breast cancer. She talks about the weight of thinking that every holiday, birthday, or family gathering might be her last. She crochets baby blankets for her future grandchildren, not knowing if she’ll be present when they’re born. Yet she embraces the present moment and encourages others to grant themselves grace. Her strong faith helps her stay grounded, and she clings to hope in all its forms. She looks forward to seeing her children get married, to keep sharing happy moments with her family, and to continue finding treatments that work.
Watch Tammy’s video above and read her interview transcript below.
- From walking five miles to being in a wheelchair overnight, Tammy’s stage 4 breast cancer story is one of resilience and hope
- Six second opinions and numerous treatments. Why she refuses to give up
- Learn why Tammy crochets baby blankets for grandkids she dreams of meeting
- Understand why the hardest part for Tammy is the fear that every special occasion could be her last
- See how hope, faith, and self-advocacy fuel her resolve
- Name: Tammy U.
- Diagnosis:
- ER-Positive HER2-Low Metastatic Breast Cancer
- Age at Diagnosis:
- Stage 2B: 42
- Stage 4: 49
- Staging:
- 2014: Stage 2B
- 2020: Stage 4
- Symptoms:
- Severe back pain
- Right hip pain
- Left leg pain
- Treatments:
- Surgeries: mastectomy, hip arthroplasty
- Chemotherapy
- Radiation therapy
- Hormone therapy
- Targeted therapies: CDK4/6 inhibitor, antibody-drug conjugate
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
- My name is Tammy
- My first experience with breast cancer was caught early, and by accident
- Years later, I started experiencing pain
- Learning that my cancer returned was devastating, because it’s incurable
- My oncologist told me I was out of treatment options
- What my current treatment looks like, and the plan moving forward
- What people don’t understand about stage 4 breast cancer
- It’s hard not to think that certain moments and events could be my last
- My hope for the future is that manageable treatments improve the quality of life for stage 4 patients
My name is Tammy
I was diagnosed with early-stage breast cancer in 2014 and metastatic breast cancer in 2020.
My first experience with breast cancer was caught early, and by accident
I went in for my very first mammogram at the age of 40. They found a calcification or several calcifications that they were going to watch at that time. So they had me doing a mammogram every six months thereafter.
Two years later, after having four mammograms, they told me I was clear and I could go back to yearly mammograms. That was in June. I had found a lump in my left breast shortly before that June mammogram and brought it up. They said the mammogram was clear. “There wasn’t anything there, nothing to worry about.” And I should just get on with life. And so I did.
As luck had it or not, I tore my biceps tendon in January and was going to have my shoulder done, and I had to have a pre-op physical. So I went to my primary care doc and I said, “Hey, I’ve got this lump.” It was protruding through the skin. She took a look at it and looked at the mammogram, and she said, “You know, it’s just a cyst. Just have that drained if it’s bothering you.” So in February of 2014, I went in for what I thought was just a cyst drainage. I was joking with the surgeon and how he was going to make the scar so no one would ever be able to tell I had had surgery.
I was put under. When I woke up, I saw my husband and the surgeon in the hallway. The anesthesiologist was holding my hand, and I knew immediately before they said a word that it was not a benign cyst. So that spiraled into having a mastectomy, chemotherapy, radiation, and hormone therapy, which I was going to be on for ten years. And I went on with life.
Years later, I started experiencing pain
In 2019, I was having right hip pain. They did an X-ray and sent me to physical therapy, and said that it wasn’t anything.
In 2020, we relocated to another part of Wisconsin, and I had to establish care with a new doctor, which I did. I was having a lot of knee pain when I would run. It was during COVID, and there wasn’t much to do but run. I chalked the pain up to that.
I saw my primary care provider for it. She did an X-ray. She said I just needed some physical therapy. I was doing that for about six weeks, wasn’t making any progress, and eventually I just stopped going. And God bless my physical therapist, he called me one afternoon and said, “Hey, why aren’t you coming anymore?” And I said, “No offense, you’re a wonderful person, but you’re not helping me one bit, and I’m not going to waste my time anymore.” He said, “Let’s have you see one of our sports medicine doctors. Maybe they’ll have some insight I don’t have.”
So I met with one of those sports doctors, and he said, “Oh, this is simple. You have a torn meniscus, and we’re going to get in there. We’ll schedule it for surgery, and we’ll clean it up. You’ll be back running in six weeks. But first, we need to do an MRI.”
So they did the MRI. I didn’t even make it home before he called me. He said, “I don’t know how to tell you this because I deal with torn ACLs. That’s the worst news I’ve given people. But there’s something really wrong with your leg and the bone in your leg and your femur. Part of the knee. I don’t know what this is, but it’s way above what I see.”
I was referred to oncology then. A biopsy was done, and it was found that it was breast cancer that had eaten through my femur.
So I went from walking five miles one day to being confined to a wheelchair the next, for fear that it would fracture if I stepped down the wrong way. A PET scan later revealed that the right hip pain that I was complaining about was due to lesions on my right hip, and the L3, which was a benign issue, had completely fractured from cancer.
Learning that my cancer returned was devastating, because it’s incurable
Statistics for metastatic disease online through Doctor Google are very depressing. When I met with my oncologist and he told me that, at best, I could hope to live 18 more months, that was very hard to hear.
I immediately had my kids come home. My daughter who was a freshman in college, my oldest daughter, and my son who was living here. I sat them down with my husband, and we told them in person.
Honestly, death — that’s where I thought I was headed. And then there was a lot of anger that there were things missed along the way, and we were trying to process through how that happened.
I had no family history of cancer and no risk factors for it. I had the genetic testing done. And at that point, in 2014, I only qualified for the testing because of my age. But I didn’t carry any of the genes that you can see in breast cancer. I had genetic testing done again, not too long ago, because there’s so much more that they test for now than they did in 2014. And, by their standards, I still have zero risk of cancer.
My oncologist told me I was out of treatment options
My son was a sophomore in high school. I asked if I would see him graduate, and was told that that was highly unlikely.
I took the second opinion thing to the extreme. I got six. I wanted to make sure that I was completely comfortable with the path I was going to be on moving forward. So that’s kind of a standing joke. “Tammy doesn’t get a second opinion. She gets six second opinions.”
After talking to people and just doing my own advocacy for myself, I decided I needed to part ways with that oncologist. I didn’t feel that we were on the same page. And I also knew that there were other options for me. So I underwent a full right hip replacement. Stayed on the targeted therapy drug I was on for another full year under the guidance or the recommendation of my new oncologist. When that stopped working, we moved on to an oral chemotherapy drug, and I remained on that for a full year.
And then I had another progression, and was started on another targeted [00:16:30:00] therapy, an antibody drug conjugate, which was administered through an IV port. I had that treatment every three weeks. That started in April, and by the end of July, my scan showed no evidence of active disease.
I continued the same treatment until December, and then I stopped, because I was having my left hip replaced due to the cancer and the radiation, and all the damage that that caused. I had a series of failed surgeries for something that was supposed to be very simple, to the point where one of my doctors thought that I was going to have to amputate the leg at some point because of it, but I still have my leg. Then I resumed taking the same antibody-drug conjugate in July when my numbers started to creep up again. I’ve been on that ever since, and they’ve dropped significantly.
So the hope is that we’ll get back to no evidence of active disease in the next short while.
What my current treatment looks like, and the plan moving forward
Every 21 days, I have treatments on Tuesdays and Fridays. I go in and I get a white blood cell booster so that my white blood cell count will allow me to have treatment on Tuesdays.
I am fortunate that my side effects are manageable. I deal with the usual ones: hair loss, fatigue, and nausea. But I find them acceptable. This is what I have to do to stay alive. It’s just kind of a repetitive cycle. And you just hope it works for a long time to come.
Every time I’ve had a progression with the oncologist I’ve been seeing for the last several years, the first thing we do is look into clinical trials and my eligibility for those. There are some questions as to whether my estrogen receptor-positive cancer has mutated to a triple negative, and some biopsies have indicated it’s a possibility. That does kind of throw a little bit of a wrench in things. But we always look for clinical trials first before deciding on a treatment. So obviously, I’m a big proponent of those. And I hold out hope that I’ll be able to participate at some point. The drug that I’m on now wasn’t available to me three years ago. It’s a game-changer.
What people don’t understand about stage 4 breast cancer
Well, when I had hair and I didn’t look sick, or even now when I put a wig on and I go out, I think people fail to realize that I’m still in treatment, that I still struggle.
I was always go, go, go. I was the mom who was doing everything, who was involved in everything. Now, especially because I’m still not walking, I depend on people for everything in my day. And that’s very difficult. But stage 4, in general, when people see you, you get asked all the time, “Oh, when are you done with treatment?” People do not understand that you’re never going to be done.
They also don’t understand that you’re not going to die from stage 2 breast cancer. You are more likely to die from stage 4. And any research that we can do for stage 4 is going to benefit those early stages. But the statistics of living with stage 4 metastatic disease are daunting, honestly. I just passed my five-year mark from my official diagnosis, although obviously I was dealing with it longer than that, and I’ve lost so many people I’ve come to know in the metastatic community, and I just don’t think people realize that.
Somebody said, “What do you mean? You have breast cancer in your bones?” There’s just a lack of awareness, I think.
It’s hard not to think that certain moments and events could be my last
I tell people now, when I meet them after they’re first diagnosed, that they just have to grant themselves grace.
When I was initially diagnosed, I kept thinking, especially in that first year, “This is the last time I’m going to have a vacation with my family,” or, “This is the last time we’re going to celebrate a holiday or a birthday.” That was really, really hard for me, because every event seemed like it was my last one.
I specifically remember one time that my daughters were home and I had baked a cake. I had gone upstairs to my room to change. I came down, and they had frosted the cake for me, and it was the worst job of frosting a cake I had ever seen. I burst into tears and said, “I haven’t even taught you how to frost a cake. What else haven’t I taught you that I’m not going to be here to teach you in the future?”
So that mindset was probably the hardest part. You just have to learn to accept the moment that you’re in. Try to remain as positive as you can. I have a very strong faith that guides me in everything I do.
For me, the physical limitations are probably the greatest challenge. Because your quality of life always has to come first, and being pushed around in a wheelchair by your son or whoever is just difficult.
I can’t do things myself that I would want to do. I still hold out hope that someday, I will again.
My hope for the future is that manageable treatments improve the quality of life for stage 4 patients
Hope is my favorite word.
You just can’t give up hoping. I had listened to that doctor I saw early on, if I had believed him when he said, “I’m sorry, you’ve got 18 months to live,” I wouldn’t still be here. I don’t let people take away my hope.
I understand that hope looks different for everybody. One of my daughters just got engaged. She’ll be getting married next year. I never thought that I’d be here to see that day. Now I hope I’m here to see the next one get married, which will be the year after that.
So, you know, it’s just holding out hope for whatever that looks like for you in that moment. And just not letting go of that.
Inspired by Tammy's story?
Share your story, too!
More Metastatic Breast Cancer Stories
Elissa K., Metastatic Breast Cancer, HER2+
Symptoms: Swollen and numb feet, discomfort while wearing shoes, severe fatigue
Treatments: Surgeries (lumpectomy, hysterectomy), chemotherapy, antibody-drug conjugates, targeted therapy (monoclonal antibody), radiation therapy
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)
Nina M., Metastatic Breast Cancer
Symptoms: Hardening under the armpit, lump & dimpling in the left breast
Treatments: Chemotherapy, surgery (lumpectomy), radiotherapy, hormone-blocking medication, targeted therapy
Symptoms: Shortness of breath, lump under armpit, not feeling herself
Treatments: Chemotherapy, Transfusions
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
Symptoms: Lump in the right breast, inverted nipple
Treatments: Surgery, chemotherapy, immunotherapy, radiation
Bethany W., Metastatic Breast Cancer
Symptom: Lower back pain
Treatments: Chemotherapy, radiation, maintenance treatment
Abigail J., Metastatic Breast Cancer, HER2-low, PIK3CA+
Symptoms: Back and leg pain, lump in breast
Treatments: Surgery, chemotherapy, radiation, CDK4/6 inhibitors
- 1
- 2
Mental Health and Learning to Talk Again: Beth’s Stage 4 Tongue Cancer Story (Squamous Cell Carcinoma)
Beth opens up about her experience with stage 4 tongue cancer. She first noticed that something was off when fatigue, earaches, and a small ulcer on her tongue refused to clear up. After rounds of antibiotics and a scary migraine, an ENT finally spotted the problem and immediately called for a biopsy. Hearing the words “squamous cell carcinoma” was surreal. She remembers thinking, “What do I do now?” while her family processed the shock around her.
Interviewed by: Taylor Scheib
Edited by: Chris Sanchez
Beth explored treatment options and started chemo and radiation in April 2024. Radiation to her head and neck was brutal, stripping her of the ability to taste, eat, and speak comfortably. Even after months of treatment, her tongue cancer came back stronger. The recurrence led her to MD Anderson, where she faced the reality of losing 85% of her tongue. Surgery lasted 12 hours and required removing lymph nodes and rebuilding her mouth with muscle from her thigh. She then went through proton therapy, documenting her experience on social media to connect with others.
Life after squamous cell carcinoma treatment has been as complicated as being in treatment. Beth had to relearn how to eat, communicate, and see herself in a world centered around food and conversation. She speaks honestly about the mental health weight of survivorship and her struggles with fear, grief, and the pressure to feel “normal.” But she also embraces her new self with courage and humor, finding purpose in supporting other young women facing head and neck cancers.
Beth wants people to understand that survivorship is messy. It comes with gratitude and anger, and some feel a responsibility to live for those who didn’t make it. She encourages awareness of tongue cancer and head and neck cancers, especially in younger women whose rates are rising. Her story is a reminder that life after cancer is different, but it can still be meaningful, connected, and full of small joys, like nibbling a few bites of pasta on vacation or sharing her story online so someone else feels less alone.
Watch Beth’s video and read her transcript below. You’ll learn more about her inspiring story:
- How she learned to eat and talk again after losing most of her tongue
- The surprising early signs of tongue cancer you might overlook
- Why survivorship can be as emotionally heavy as treatment
- The social and mental health challenges of life after tongue cancer
- How Beth turned her diagnosis into advocacy for others
- Name: Beth R.
- Diagnosis:
- Tongue Cancer (Squamous Cell Carcinoma of the Tongue) with Perineural Invasion
- Age at Diagnosis:
- 34
- Staging:
- Stage 4
- Symptoms:
- Intense migraine
- Earaches
- Persistent tongue ulcer
- Treatments:
- Surgery: total glossectomy
- Chemotherapy
- Radiation therapy: proton therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
- Hi. My name is Beth!
- When I first noticed something was “off”
- The moment everything changed
- Exploring my treatment options
- The treatment path I took
- My symptoms came back
- Transferring my care to MD Anderson
- What my surgery looked like
- I had to do more treatment
- Losing most of my tongue impacts my everyday life
- Learning how to eat again
- How cancer changed me
- What I want people to know
Hi. My name is Beth!
I had squamous cell carcinoma of the tongue. I was originally diagnosed on March 11, 2024. I had a recurrence on October 5th, 2024. I’ve been cancer-free for almost five months now.
When I first noticed something was “off”
Cancer snuck up on me, honestly. It’s interesting looking back because hindsight is 20/20.
I had a lot of very mild symptoms, things that I wouldn’t have suspected were signs of cancer. I had habits that weren’t out of the ordinary. I was very tired because I was living a fast-paced life. I started to get sick and had a hard time getting better. My immune system just didn’t seem to function the way it should. I had a small ulcer on my tongue, almost like a cold sore or a swollen taste bud. My dentist noticed it and said, “Keep an eye on it.” I mentioned it to my primary care physician at some point, but I just bounced back to the dentist on that.
Leading up to my diagnosis, I got a really bad earache, to the point that I couldn’t sit still; it felt like swimmer’s ear or something bad. I messaged my doctor through the portal, and he put me on antibiotics. They didn’t help. I went back to him, and he gave me another round of antibiotics. Then I got a migraine, and it was worse than anything I had ever experienced before.
I went back to my PCP and told him about the migraine and earache. “We need to figure this out,” I said. He thought I might have problems with my TMJ or temporomandibular joint, which connects the jawbone to the skull, because I was grinding my teeth, and that was causing tension.
He told me, “Let’s try the ear, nose, and throat specialist.” So I went to the ENT. I went by myself because I didn’t think anything was wrong. The ENT pulled my tongue out and stopped right in her tracks. I thought that was an interesting reaction. She said, “You need a biopsy, right now.” She pulled out what looked like a sub hole punch, put some lidocaine on the iffy part of my tongue, and punched a hole in the side of my tongue. I got blood all over my face. I told her, “You have to tell me what’s going on.” She was nervous and said, “I’m going to tell you that in my professional opinion, it looks like cancer. It could come back as an autoimmune disorder that I’m unfamiliar with, or some other thing like that. Let’s not jump to the worst-case scenario, but you need to be informed. I’m giving you my best advice.”
So I left there, and that’s probably the angriest I’ve been in the last two years. I returned the following Monday with my mom, my sister, and my fiancée. And they told us that I had squamous cell carcinoma.
The moment everything changed
The only thing I really remember about finding out that it was cancer is that she never said the word ‘cancer’ itself. She said ‘squamous cell carcinoma,’ which is, of course, cancer, but I wasn’t used to hearing that. They handed me a sheet of paper that explained what squamous cell carcinoma is. It was like a worksheet you would get in school that tells you you’re sick.
I thought my fiancée, my mom, and my sister had a more intense initial reaction than I did. It was like in the movies, where the sound cuts out, but there was a lot of murmuring and movement around the room. The only thing I remember is thinking, “What do I do now?” I haven’t thought about it in a long time.
At the time, I felt like I was going to get all the answers and the knowledge about cancer and find the answers to questions like, what do I do now, how do I fix it, what are my options, where do I go from here, and so on. And that’s not what happens. There’s so much waiting involved and there are so many options, doctors’ appointments, tests, and things like that before anything else happens.
Exploring my treatment options
So in that initial appointment, I did ask, “What happens now? I have tongue cancer, what do we do?”
At the time, the ENT said that I would have to have surgery to remove the tumor, after which I would hopefully have clear margins. And then, hopefully, that would be the end of it and I wouldn’t need any more treatment. But if the surgery wouldn’t have clear margins, I would then need to do radiation and chemotherapy. He added that the surgery would leave me with a permanent speech impediment, and it would likely be challenging for me to feed myself for the rest of my life. I said, “What are my other options?” He told me, “Some people opt to do chemo and then radiation instead of surgery.
Looking back at MyChart, the ENT said I declined surgery. I don’t feel that’s how the conversation went, though. I feel like I was presented information and my options were, end up with a speech impediment and be unable to eat and then still have to do chemo and radiation, or just do chemo and radiation. And for me, at the time, it seemed unnecessary to have part of my tongue cut out if I didn’t need that done.
The treatment path I took
I went down the road of radiation. I was diagnosed on March 11 and started chemo and radiation, blast radiation to my head and neck, on April 29.
Almost eight weeks after that, and after they punched a hole in the cancer, the cancer seemed to get mad. I had planned to work up until I started treatment, but that didn’t happen. I lasted about three and a half weeks before the pain got too intense within two months. By the time I started treatment, I was quite ready to get the cancer out of my body. I was in a lot of pain. I could barely eat or talk.
I did seven chemotherapy sessions. I also did radiation to my head and neck. I developed burns on the inside of my mouth, on my tongue, all over my cheeks, down my throat, into my chest cavity. By the third week, I had lost the ability to taste, and by the fourth week, I could no longer eat using my mouth.
Radiation to the head and neck is a form of cruel punishment. I know that it’s effective in treating cancer, but I wish that more head and neck patients understood how difficult it is to have the head and neck blasted with radiation.
I finished my final round of radiation on June 17, 2024. And we danced and everything. I had done it. I had defeated cancer. I had lost 45 pounds in just two months, couldn’t talk or eat, but the cancer was gone, so it was time to celebrate.
My symptoms came back
About two months later, I was so eager to get my life back that I went back to work part-time. I was forcing the narrative that I was better, even though I didn’t feel better.
As it turns out, my cancer was chemo-resistant.
Around my birthday, I started getting headaches. We went to Miami, and I’m really glad I went on that trip. Because it was the last time I had my tongue.
We had this huge, grand dinner and I had this new lease on life. But when I got back home from Miami, I started having headaches. I went to see my oncology team, and they said, “Well, there are plenty of side effects from radiation.” It was hard to respond to that, but I had a CT coming up.
I had an awesome weekend during which I hosted my best friend’s bachelorette party. I was feeling a little off, but I powered through. The last day of that weekend, I had a headache like I used to before I got diagnosed. I went downstairs into one of the guest rooms, put on my headache hat and shut the door, and screamed at the top of my lungs, blood in my ears. “This is not normal,” I said.
When we went home, I told my partner about it, and he took me to the emergency room. I told them my medical history and they said, “We’ll do a CT scan.” The ER doctor said that they couldn’t see anything, and I responded, “OK, but I’m still in pain even after the medication you gave me, so what now?” They admitted me overnight, and I ended up in the hospital for five days.
I didn’t think the cancer had already come back. I hadn’t even let that cross my mind. Of course it had, but I felt like one of the doctors would have seen it if so.
My oncologist sat me down and sat next to me. He said, “The cancer is still there or back.” I was like, “How is that possible? How could that happen? You didn’t tell me it cold happen.”
Cancer number two was worse. It was much larger, much further back, and much meaner than cancer number one. My medical oncologist isn’t at fault. They treated it, and while I was in treatment, the cancer leapt out of the treatment zone and started over.
The medical oncologist told me that they thought I should go to MD Anderson in Houston. I wish I had started there. I can’t go back, of course. I lost 85% of my tongue.
Transferring my care to MD Anderson
It took place over two or three weeks. So they did a PET scan, a CT scan, and I met with all the doctors and they said, “This could happen. We’ll all talk. Come back in three weeks and we’ll tell you, as a board, what we decide is the best way foward.”
I went back on October 28. I then met the surgeon, the radiation oncologist, and a speech pathologist. Every single one of them said that I had to lose my tongue; I had options and didn’t have to do this, but it was what they recommended.
It was such a weird day. It was right before Halloween. I went home from finding out that I was going to lose my tongue with a giant bag full of Halloween candy. I will say I will never forget that day, because on top of everything else, my fiancee proposed to me that night.
We were going through the candy and there was this little plastic spider ring. He said, “Will you marry me?” and put the little ring on my finger, and that’s how we got engaged. It was just the two of us.
I thought my life was over, that I would never get to tell my mom that I loved her, and that I would never go out to dinner with my husband, enjoy vacation, or be normal. And then my fiancee looked me in the eyes and said, “I want every version of you.”
I went home and scheduled surgery. And then the cancer tried to kill me for the next four weeks. Squamous cell is a rapidly growing cancer, an aggressive one. The specific location of mine and the type I had was wrapped around my cranial nerve, which is attached to the ears and brain. That’s why I was having the headaches; the cancer essentially got into my nerve and then tried to suffocate me. My family will never forget the sounds of my screams.
What my surgery looked like
By the time I went in for surgery, I was so ready for the cancer to be removed from my body. I didn’t care what they did.
I was very upset about losing my tongue when I found out I needed to, but by the time I lost my tongue, I had resigned myself to the fact that I needed to get rid of it. It was disease-filled and it was killing me. I think that because of that, I lost sight of all the things that I will lose. The emotional impact of that has taught me now that I’m in survivorship. I think my body and mind were protecting themselves by putting on those blinders.
My surgery was 12 hours long. They removed the top of my neck, 75 of my lymph nodes, and 85% of my tongue. And then they took out a 12-inch-long muscle from my thight and reconstructed a flap. But because I have no natural tongue from this point, the flap is sewn to the gums and anchored to the floor of my mouth. I have about 10% of my tongue left. The only movement it does is what the basic tongue pumps. But as far as my oral cavity, nothing in it moves.
I had to do more treatment
I went back for my follow-up, and they said that I had to do proton therapy.
I had been under the impression that I would only need to do radiation once, to my head and neck. But MD Anderson said that proton therapy would be necessary due to the pain I was in and because the cancer had metastasized to the lymph nodes.
I think I was actually more upset about proton therapy than about surgery, because I had already done radiation and I knew full well how brutal it was. Keep in mind that I had been in treatment since April 2024, and this was now January 2025. I was supposed to do three months of chemo and radiation to be cancer-free, and ten months later, I still wasn’t healthy.
I started doing TikTok before radiation and after surgery. So all of my proton therapy is documented, which is wild. I started filming myself.
I wanted to be done, I wanted it all to be over. I know that’s what we all want. When they said that I had to continue treatment, it just consumed me. It felt so long and so hard.
Losing most of my tongue impacts my everyday life
I had to relearn how to eat, talk, and live my life as a person with a disability, and I fit into a lot of boxes that I didn’t before.
Survivorship in some ways has been as complicated as being a patient. The mental load of being a survivor is really heavy. I felt very alone when I found out that I had head and neck cancer as a woman. Unfortunately, it turns out that the incidence of such cancers in young women specifically has damn near doubled in the last twenty years. It used to be mainly a cancer of men 60 years and older. Women aged 25 to 45 have become the largest demographic next to men over 60. They don’t know why.
That being said, I couldn’t find anyone exactly like me, a young woman with her whole life ahead of her. So I started with social media as a tool to track my own progress.
In general, some of the adjustments have been tough. Seeing what I look like when I talk. Controlling the movements of my face and mouth. All those things.
My number one thought is, hopefully, if one other person, some girl, comes across me on my little corner of the internet and feels like they can relate, I will have done more good than bad.
Learning how to eat again
We don’t always think about it this way, but food is at the center of our daily lives, as are communication, our voices, and the way we talk to people. Holidays, social interactions, birthdays — pretty much everything we do revolves around food, sometimes alcohol, talking, and being a person. And when we lose that, we don’t feel like we have a place in the world any longer. Especially coming from my background, where I literally fed people for a living.
I’ve lost a huge part of my identity. I’ve always been the loudest girl in the room. I’ve always been quick-witted, always liked telling jokes, always loved to cook a big meal and make cocktails and bring people together around those things. And then cancer came in and said, “Huh, just kidding.” And I also feel like it was hard on everyone in my life. No one, even those in my immediate family, knew how to help me.
I wanted so badly to eat again. My speech pathologist asked me, “Are you taking sips?” I was taking little sips, but I wanted to open my mouth again, and I didn’t know how to do that. My speech pathologist team at MD Anderson has been such a boon. I can’t say enough wonderful things about them. My plastic surgeon there, and everyone I’ve dealt with there, have quite literally changed my life. I’m indebted to them for giving me the chance to have the life I have now. They helped me take a no-nonsense approach to speech pathology. I wanted to do the hard things; if it’s hard, just tell me that it is.
I found out that the throat is one of the only muscles in the body that will completely forget how to do its job. So at the start, I was forcing a swallow with no tongue. So I would be sending food to the back of my throat in the hope that when it got there, my throat would know what to do. But as it turns out, it doesn’t, not all the time. Not to mention because they had to cut my neck open, and a lot of nerves and things are located there.
My feeding tube started to hurt, but it was sore, and I couldn’t deal with it anymore. But I was determined. And the first week or so was an adjustment, and I got stronger. I had been hungry before, and I didn’t want to be hungry anymore. All those efforts were strengthening my muscles, unbeknownst to me. And then one day, I think we were are the movie theater, and I couldn’t stand it. I shoved a French fry in my mouth and chewed it up, and took little drinks of water. It took me the rest of the movie to swallow it. But it turns out I can eat solid food.
It’s hard, it’s so hard. I put out a lot online that’s encouraging, but I would be lying if I said that I don’t still struggle.
The biggest thing for me with food is that I had to change my mindset around solid food. I don’t eat to fill myself up, with the expectation that I’m going to polish my plate. I didn’t have the opportunity to eat for almost a year of my life. Anything I get to put in my mouth is a bonus. I drink nutritional drinks four times a day. I’m well-fed. I feel strong and healthy because I know how important nutrition is. Now, in this instance, I might have some instant macaroni and cheese. It’s delicious, salty, and soft, and it’s a safe food for me; I know I can always have some. I can go on vacation with my family and order the kids pasta and have a few bites of noodles, and get to share that moment with them. And that’s enough.
How cancer changed me
I have a lot of fear. I was afraid of almost everything coming out of treatment. I didn’t know how to be social; I didn’t know how to talk to people like the guy at the gas station. I hated opening my mouth and watching people’s eyes and seeing them go, “What did she say?” I hated having to repeat myself.
I refused to go to the grocery for several months, because I could not stand to be reminded of all the things I can’t do. And I keep putting this invisible pressure on myself from everyone else.
But I could just honor my body. I could stop being so mean to the girl who almost died, and start taking care of her.
And all I’ve ever wanted is to have a little bit of what I had before. My life will never be the same. I’m not the person that I was. Because I found out I had cancer. And now I realize that this person I am now is actually really cool and super brave. I started that little initiative online, and then a whole bunch of other people were like, “Hey, me too.”
I want to take what happened to me and use it to help make things better in the world. All I want is to make someone else feel a little bit less alone and a little bit less scared.
What I want people to know
Survivorship is a lot of feeling bad that other people have died and that I’m alive. It’s anger about what happened to me. But I’m glad that I’m here. My heart is going to be broken forever, but I’m happy I have this new outlook on life. Sometimes I’m here and sometimes I’m there; sometimes both at the same time.
I went into the treatment room thinking I would never tell anyone anything ever again. They told me they had no idea what I would sound like. And I can’t imagine being trapped inside my body. That was the biggest fear.
Not everyone gets a second chance. And not everyone gets to open their eyes for the first time. Cancer was the worst thing that ever happened to me, but it feels like getting a second chance. And the bonus round is really sweet.
Inspired by Beth's story?
Share your story, too!
More Head and Neck Cancer Stories
Alyssa N., Adenoid Cystic Carcinoma
Symptoms: Persistent jaw pain, lightning-like facial pain during the first bite of meals
Treatments: Surgery (tumor removal), radiation
...
Eva G., Oral Cancer, Stage 4
Symptoms: Sore on the tongue, which caused pain during eating and speaking; changes in the color and texture of the tissue where the sore was located
Treatments: Surgery (partial glossectomy, radical neck dissection, reconstruction), radiation
...
Teresa B., Recurrent Breast Cancer (Hormone-Positive), Oral Cancer (Lip Cancer), and Skin Cancer (Melanoma)
Symptoms: Lip cancer: chapped lips & a pimple-like growth on lip, breast cancer: enlarged left breast with lump, melanoma: none
Treatments: Surgeries (bilateral mastectomy with reconstruction, lumpectomy, craniotomy, Mohs, surgery, wide local excision), hormone therapy, radiation therapy
...
Kandi B., Adenoid Cystic Carcinoma, Stage 3
Symptoms: Fatigue, headaches, depression, occasional feeling of tongue being on fire or inflamed, appearance of tumor on salivary gland on tongue
Treatment: Surgery
...
Larry W., Neck Cancer (Malignant Neoplasm of the Neck), Stage 4
Symptom: Lumps on the right side of the neck
Treatments: Surgery (tonsillectomy, lymphadenectomy), chemotherapy, radiation, clinical trial
...
Finding Strength Through Art: Nicole’s Stage 4 Triple-Negative Breast Cancer Experience
When Nicole was diagnosed with stage 4 triple-negative breast cancer, her world shifted overnight. A jewelry artist, Nicole saw cancer as an unexpected chapter in her human experience. What began as strange “zapping” sensations in her chest quickly revealed a life-threatening reality. After pushing for timely appointments and a rushed mammogram, Nicole learned not only that she had breast cancer but that it had already spread to her liver.
Interviewed by: Taylor Scheib
Edited by: Chris Sanchez
Nicole’s strength lies not only in her resilience but also in her creativity. For over a decade, she has poured her energy into hand-carved jewelry design, using wax carving as a meditative process to find calm through chaos. Even during intense chemotherapy and through treatment fatigue, she continued creating, transforming her pain into purpose. Eventually, after targeted therapy, she began showing results. Nicole underwent a mastectomy with aesthetic flat closure, marking both physical and emotional healing milestones.
Nicole’s experience was far from easy. Her first chemotherapy regimen failed, her tumor grew, and she endured infection and significant pain. But she dug deep and proactively self-advocated. She insisted on faster diagnostic testing and remaining deeply engaged in her care, which proved to be lifesaving. Her story underscores how listening to one’s intuition can be critical in the world of complex oncology.
Now responding well to treatment, Nicole continues chemo alongside complementary therapies like hyperbaric oxygen sessions and lymphatic drainage. She also channels her energy into advocacy and is preparing to attend the San Antonio Breast Cancer Symposium as a patient representative. Through her art and voice, she reminds others that stage 4 breast cancer is not a death sentence, but a test of perspective, perseverance, and the power of hope.
Watch Nicole’s video and read the transcript of her interview below. Her story will show you how:
- Self-advocacy can mean the difference between early treatment and missed opportunity
- Creativity can become a form of healing and grounding during illness
- Treatments for metastatic triple-negative breast cancer are improving every year
- Transformation is possible through both physical healing and renewed purpose
- Trusting your intuition when something feels wrong is powerful
- Name: Nicole B.
- Diagnosis:
- Triple-Negative Breast Cancer (Metastatic)
- Age at Diagnosis:
- 42
- Staging:
- Stage 4
- Mutations:
- BRCA1 and PTEN
- 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
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
- My name is Nicole
- Discovering my passion for jewelry
- When I first noticed that something was wrong
- Scheduling the mammogram
- The waiting game
- The diagnosis: stage 4 triple-negative breast cancer
- Beginning treatment and facing complications
- I recently had a mastectomy
- Continuing treatment and finding hope
- How creativity keeps me alive
- Stage 4 is not a death sentence
- What I want others to know
My name is Nicole
My name is Nicole. I have stage 4 triple-negative breast cancer. I was diagnosed earlier in 2025.
Cancer was the unexpected part of my human experience, as it is for most people. I’m a fine jewelry designer, and I make primarily engagement rings in 14- and 18-karat gold. I started my business in 2012, and it has evolved since then. I work from home and live with my wonderful partner, Eric, and his son. I love art and nature. I’m a bit of a homebody and enjoy watching films.
Discovering my passion for jewelry
I attended SAIC in Chicago and earned my degree in Visual Communications, focusing on graphic design. After a major surgery, I left that field and began making jewelry for myself — something hands-on to balance the project management aspect of my job. Over time, as I took more classes and gained more experience, my work evolved into whimsical, nature-inspired, hand-carved pieces.
A loss in my life pushed me to fully embrace that artistic style, even though I thought people might find it “weird.” Fortunately, my clients loved it.
For years, I focused on mastering technique. I learned the rules so that I could break them. Hand-carved jewelry uses jeweler’s wax, a harder, plasticized wax. I carve the wax to create models that go through a casting process where the wax is burned away and replaced by gold.
Working in wax is forgiving; you can fix mistakes. If you carve directly in gold and make a mistake, you have to scrap the whole thing. This process allows me to create sculptural, textured, and expressive work.
When I first noticed that something was wrong
In February 2025, I went to the Tucson Gem Show with my best friend, Lindsay. Right before the trip, after my period, I noticed a strange pain when my seatbelt touched my chest. It felt like a shock or zap. I thought it might be a cyst because I have dense breast tissue and have had cysts before.
But over the trip, I felt more zapping and tingling sensations. They didn’t feel normal. When I returned home, I saw my gynecologist. The lump had grown, and during the exam, he became visibly concerned. He said there was even a temperature difference between my breasts and ordered an urgent diagnostic mammogram.
Scheduling the mammogram
Getting scheduled was difficult. I had to advocate fiercely for myself because appointments were booked months out. Once I finally got in, the mammogram tech kept assuring me it was probably nothing. But deep down, I knew something was wrong.
During the ultrasound, the radiologist quickly returned and requested a rush biopsy. While they couldn’t confirm cancer yet, it was clear they suspected it.
The waiting game
Waiting for results was the hardest part. I cried often. I couldn’t sleep, and I was physically and mentally exhausted long before treatment began. Friends told me that waiting is one of the hardest parts, and they were right.
I went through a lot of cognitive dissonance. I had a hard time sleeping. I cried a lot because I was scared.
The diagnosis: stage 4 triple-negative breast cancer
I received a call within 24 hours of my biopsy. The doctor used the phrase “malignant neoplasm,” but didn’t say the word “cancer.” I had to push for answers. They wouldn’t yet tell me the type, but scheduled me for oncology appointments weeks away.
By the time I saw the surgical oncologist, the tumor had grown dramatically. Testing confirmed triple-negative breast cancer, and within weeks, a PET scan revealed it had spread to my liver and possibly my spine. That’s when I was told it was stage 4.
My doctor told me that if I hadn’t been as proactive as I had, I probably wouldn’t be alive today.
Beginning treatment and facing complications
I began chemo in April, right after my port surgery.
The first treatment didn’t work. The tumor continued to grow and became infected, landing me in the hospital for four days. It was excruciating.
Eventually, I switched to a targeted therapy, an antibody drug conjugate, and it began working quickly.
I recently had a mastectomy
Once the tumor and lymph nodes shrank, my oncologist agreed that I could undergo surgery.
On September 22, 2025, I had a mastectomy with an aesthetic flat closure. The surgical team removed 18 lymph nodes, 15 of which tested positive for cancer.
The recovery went better than I expected. My doctors were supportive, and I felt immense relief knowing the tumor was gone.
Continuing treatment and finding hope
I’m still on chemo. My doctor explained that stage 4 triple-negative breast cancer typically means lifelong treatment, but I’m responding well. I also do hyperbaric oxygen therapy and lymphatic drainage.
Even with treatment fatigue, I try to stay positive. I’ll be attending the San Antonio Breast Cancer Symposium as a patient advocate in December, which gives me purpose and connection.
I try to stay positive, but I will say chemo has affected my mental health so much.
How creativity keeps me alive
Creating helps me cope.
Jewelry-making is meditative; it lets me focus, breathe, and be present. Even during chemo, when fatigue and brain fog hit hard, I’ve found comfort in carving, designing, and creating meaningful pieces.
I’ve also created silver “Butterfly Portal Pendants,” symbolizing hope and transformation. I donate the proceeds to metastatic breast cancer research.
The wax carving I do is a really meditative process… when I really get into my flow, I can forget about cancer for a little bit.
Stage 4 is not a death sentence
Stage 4 breast cancer is not a death sentence. There are many subtypes, and everyone responds differently.
Treatments are getting better each year. I know women who’ve been “no evidence of disease” for over five years on their first line of treatment. I hold on to that hope.
Many women have lived beyond ten years, some even twenty-five years, with metastatic breast cancer.
What I want others to know
You are your own best advocate. Doctors are wonderful, but they don’t live in your body.
Trust your intuition. Push for answers. Seek second opinions if needed. At the end of the day, you’re the one living with the results. Empower yourself.
Inspired by Nicole's story?
Share your story, too!
More Triple-Negative Breast Cancer Stories
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., 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., 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 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., 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 H., Triple-Negative Breast Cancer, Stage 2B, IDC
Symptom: Lump in left breast
Treatments: Surgery (mastectomy), chemotherapy
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)
“Know Your ‘Why’”: Dalitso Embraces Life Through Stage 4 HER2+ IDC Breast Cancer
Dalitso was diagnosed at 38 with stage 4 breast cancer. Eight years before her diagnosis, she noticed an unusual fatty lump in her left breast. Even after mammograms, the doctors she saw weren’t initially alarmed. In the succeeding years, she experienced fibromyalgia pain, weight loss, spasms, and eventually had a spinal fracture that revealed not only that she had breast cancer but that it had spread to her bones.
Interviewed by: Carly Knowlton
Edited by: Chris Sanchez
Dalitso’s life changed drastically in 2020. She had radiation and long-term treatments, including a combination of oral and injected medications. While these treatments were ultimately effective against her HER2-positive and invasive ductal carcinoma (IDC) breast cancer, they brought intense side effects, including neutropenia, anemia, heart issues, and overwhelming fatigue. She spent many days in the hospital, yet she embraced moments of connection, like cuddling with her children in the hospital bed. Eventually, the treatments led her to hospice care for palliative support, where she faced some of her most challenging days.
Despite these hardships, Dalitso found reasons to keep moving forward. She leaned on her faith and her family for strength. Even small projects, like planning home designs, gave her a sense of purpose. Her love for travel never faded; she managed to visit Paris, albeit in a wheelchair, and returned to her home country, Malawi. These were experiences she once thought were impossible.
Dalitso’s perspective on life has evolved into one of gratitude and authenticity. She focuses on “doing life,” raising her kids, being there for her mom, and staying connected with friends. She still manages the physical pain and continues ongoing treatments, but celebrates milestones like graduations and opens the memory boxes she once filled with letters and gifts for future moments she feared she wouldn’t see.
Dalitso’s story is a reminder that living with metastatic breast cancer is not just about treatment. It’s about finding meaning and purpose and celebrating small joys each and every day. She encourages others to know their ‘why,’ their reason to live and persevere; to stay connected to loved ones; and to embrace life with honesty and hope.
Watch Dalitso’s video and check out the transcript of her interview below. You’ll find out more about her experience:
- How her journey reveals the power of resilience, from a missed diagnosis to stage 4 breast cancer
- The way faith and family kept Dalitso going through pain and uncertainty
- How a mother’s love fuels her struggle against metastatic breast cancer
- The experiences, including travel and small joys, that brought hope in Dalitso’s darkest moments
- How knowing your ‘why’ can change everything in a cancer experience
- Name: Dalitso N.
- Diagnosis:
- HER2+ IDC (Invasive Ductal Carcinoma) Breast Cancer
- Age at Diagnosis:
- 38
- Staging:
- Stage 4
- Symptoms:
- Appearance of large tumor in left breast
- Severe back and body pain
- Treatments:
- Surgery: hysterectomy
- Vertebroplasty
- Radiation therapy
- Hormone therapy
- Clinical trial
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
- Hi. My name is Dalitso
- Eight years before my diagnosis, I noticed fatty tissue
- I had a second mammogram, and it revealed breast cancer
- When I heard I had stage 4 breast cancer
- I started radiation
- I was experiencing side effects from radiation
- I started hormone therapy
- I went on hospice
- I wanted to travel
- My cancer spread
- I started a new treatment plan
- I was declared No Evidence of Disease
- How my diagnosis has affected me being a mother
- I look at life differently now
- What I want others to know
Hi. My name is Dalitso
I was diagnosed with invasive ductal carcinoma in 2020 at the age of 38.
I am most passionate about people. I was a mental health therapist before I retired due to my cancer diagnosis. In our house, three generations live together. When it comes to fun, for me, it’s everything that revolves around going to the beach together, swimming, cooking, and traveling together. There’s always food at my house. I used to travel a lot before I got ill. That’s always a goal.
Eight years before my diagnosis, I noticed fatty tissue
It started with this fatty tumor tissue that I had eight years before my breast cancer diagnosis. Even after I had a mammogram, the doctors didn’t seem too concerned. It was getting harder and harder, like a golf ball. Then I started having fibromyalgia pains for years, and I was doing everything I could, like CrossFit and various other activities, to get my health back on track.
Come 2018, I started working with my doctor because I had a history of autoimmune Hashimoto’s. So we thought it was coming from that. So we really went strong, and we were dealing with that. But I lost a tremendous amount of weight. And so it really was very unsightly. Half of my breast was sticking out at the time.
By 2020, I was feeling a lot better. I had more energy. But I had back pain, and I was seeing a chiropractor. I was getting a lot of massages, but I just kept having these spasms.
I had a second mammogram, and it revealed breast cancer
I was getting off the examination table, and I was wincing because getting up my back was sore. And he looked very concerned, and I went, “You’re a breast surgeon. Why are we focusing on my back?” And he just looked very concerned.
The following day, he called me after an emergency PET scan and told me that it was actually stage 4. It had metastasized to my bones. And I actually was walking around with a fracture on my spine. That changed the course of treatment.
When I heard I had stage 4 breast cancer
I remember that day very well. I was newly divorced in 2018. My youngest daughter would spend one week with me and one week with her dad. She had just come back, and we were just sitting on the couch after I came back from work, and we were trying to figure out what kind of movie we were going to watch. And that’s when the doctor calls me and tells me the news.
And I was just shocked. And I still didn’t really quite comprehend what stage 4 meant. I think I was more shocked that I had a fracture in my back that prevented me from wearing the shoes that I love. I just thought, “Okay, it’s a higher level of staging.” In my mind, it wasn’t like, “Hey, this thing is going to kill you,” or “This thing is terminal.” It didn’t really hit me. I just said, “Okay,” and went on to watch a movie with my kids. I think it slowly hit me as we went along.
I started radiation
I was supposed to go and have palliative radiation on the fracture in my spine, not even on the breast. I did have a couple of hotspots, but the fracture was really causing pain and all that. I was also going to go in and start chemo with the oncologist.
But on my way there, the bone actually fractured all the way through. I was in the infusion center, but I was completely paralyzed from the belly down. They had to bring me to another place around the corner in an ambulance, where they did an emergency procedure that involved an epidural needle and injected a sort of liquid cement into the fracture in my spine. It was high intensity, short duration. No one could drive me. I had to drive myself, and I had 20 minutes after the procedure to get home and eat, and then I would just be wiped out and fall asleep.
After that, we started working with the oncologist. There’s no end to treatment when it comes to stage 4 cancer. It’s a matter of two things: how well you’re tolerating it, and how well the cancer is responding to it. My treatment was a newer drug combination that came out a couple of years ago for metastatic breast cancer. It worked really well on the cancer, but I had a hard time with it. One of the two drugs was injected, and the other one was ingested, through pills. On the first day of my pill, that’s also when I went in to get my shot. And that day, and every time I would go in, I’d stop breathing, and so it would become this emergency requiring Benadryl and steroids. We tried different combinations. Two nurses would do this and do that. Sure, the cancer was responding to it, but then I was developing all the other side effects.
I was experiencing side effects from radiation
The radiation was going into my bone marrow. My blood cells were becoming distorted, I was having heart issues for which I ended up in a hospital, as I mentioned, I also couldn’t breathe, and then, yes, neutropenia. I really started to feel them as the weeks went on. All this is not-so-fun stuff. Every six weeks, I ended up in the hospital.
Whenever I’m there, my kids always come and we cuddle on the bed together, literally squeeze into the bed together, and sometimes nap for as long as they allow us to. So that’s something we always do when I end up in the hospital.
I started hormone therapy
What I took is considered adrenal hormone therapy. The medications are working on disrupting the cancer’s attachment to the hormone. I did that until I started to need to get hospitalized constantly.
The cancer had already caused so much inflammation. Not only did I have the localized pain where the fracture had happened, but I was also constantly in physical pain. It was like the worst kind of flu, or like someone running me over with a dump truck.
So by August, we were trying different things. We tried certain pain medications. We tried changing to other medications. It was the same situation. We took a break from the medications in October. But I was still ending up in the hospital every so often. My white blood counts were tanking. The radiation had caused effects on the red blood counts, too. I was constantly anemic. So there were all these side effects that I was dealing with. We kept delaying it until the following year, 2020, on the first of April. And we tried one more time. And immediately, I was sick again, and it just spiraled. So in August 2021, I ended up in hospice.
I went on hospice
So we had to invite hospice palliative. They tried very hard, but I just kept going downhill to a point in 2021. I was saying goodbye to the kids. I was calling the kids’ schools and saying goodbye to friends. It was really bad. I just remember this one week where it was like living moment to moment, and it was just a vigil. My mother was not sleeping. It was a very, very challenging week. And so they were throwing everything at it right to a point where they threw too much at it.
And one of the doctors just listened to me, and he was like, “You need to be on hospice.” And I was trying to tell my doctor that. And he sent me to a psychiatrist and told my pain management doctor to stop giving me medicine because he said I was just pretending. Which was very upsetting.
I didn’t think I would make it. But by the grace of God, I did. I started pulling through.
I was in hospice for three years. We were struggling with the inflammation that was in my body, caused by the cancer and the treatment that we had. They just were having a hard time, and hospice was having a hard time. You know you’re in trouble because they have the liberty to give you as many things as they can at one point. For nine months, I was walking, sleeping, eating 24-7 with the big IV bag, the 500ml.
There were just days when you just couldn’t predict how you were going to feel. There were days when 4 or 5 nurses were being called to the house, just to come and manage the pain, because it just was not manageable. So I was mostly home, and I barely went anywhere. Because I couldn’t drive. It’s like Groundhog Day, where every day is the same. And if it weren’t for my children and my faith and having my mother with me, I don’t think I would be here right now.
Little things matter. Your perception matters, right? So for me, just having a project, like designing a house, gave me something to do that I didn’t need to leave the house to do.
I wanted to travel
There was a picture where I was sitting, it looked like on the patio, where I was just 85 pounds. I wasn’t a big person to begin with, I’m 5’1”. But I definitely wasn’t 85 pounds when I started this whole affair. It’s like all you could see was my head.
I had such a goal, though. I wanted to travel. I had promised to take my oldest daughter to Paris when she graduated from high school. I couldn’t do it. But my ex-husband surprised us both by taking us to Paris.
I was in a wheelchair for most of the trip. But it was still worth it. My ex-husband was just really amazing, and so were the girls. And we did everything.
I also really wanted to travel back to my home country, Malawi. I never thought I would make it back there alive. It was a big thing. My doctor was so encouraging. He went, “You can do it.” We did everything we could for me to take a five-week-long trip to Malawi, which was just so surreal. I remember landing back at the airport. I just wept, because I thought I was going to go back in a cremation box. So being able to come back alive was the best feeling.
My cancer spread
I was beginning to have some pain that just didn’t feel quite right. So I tried to get off the medication. That was horrendous, but I was able to feel that something was wrong.
So I went back to see my oncologist, and the cancer had spread. Some of my ribs and my sternum were broken. The cancer had spread into the ball sockets of my hips. I had extra fractures in my spine. So that’s what was causing the pain. So at that point, that was actually more challenging. Hearing that than the first time around.
My kids lost it. They did not want to hear about treatment because treatment is what brought me to palliative care.
I didn’t want to go back on treatment because I had vowed that I would rather just live my life instead of going back on treatment. I told my kids, “I wish mommy was able to do a lot of things, but I can’t decide where the cancer spreads.” Right? So that was more devastating. I was scared this time.
I started a new treatment plan
The doctor was going to put me on this new trial in which participants have had fewer side effects. It was already a phase two trial. The first thing I needed to do was to do radiation on the spots. I had no pain in my ribs and my left hand side, where the ball socket was very necrotic, and other places on my back. So we did that again. It was more intense than the last time. I just started not feeling well. I was swelling. I had blood clots. I had pneumonia for four months. So finally they had to they had to take me off that drug. And I’ve been doing relatively well since then.
I was declared No Evidence of Disease
My sister comes in, and I said, “Hey, what’s going on with the CT scan?” And she was like, “Oh, I didn’t tell you. The doctor wanted you to know that there’s no evidence of disease.” I’m like, “Wait, what does that mean?” “We don’t see anything. You’re good.”
It was such a surreal moment. Amazing. But I still struggle. Because I’m still in a lot of pain. So that’s sometimes hard, you know? And I still take the same meds because you have to continue taking them. So nothing much has changed. But it’s still something I am very, very grateful for.
How my diagnosis has affected me being a mother
It really was very hard, especially for the first eight months. My little one had to live with her dad almost full-time. That was devastating for both of us and for my kids. You know, I’ve had my oldest daughter see me being pinned down in the hospital because somebody is trying to get a vein, and I’m screaming and all that.
But what’s interesting is you don’t stop being a mom in the middle of it.
I would tell them to stop, and I would send her out of the room. And so that was my biggest motivation. If it were not, you don’t get a day off from being a mom. You still do homework when you’re sitting on the bed, you know? You do what you can, and you do it because of them. Right. And their activities and what’s going on in their lives give me motivation. Right now, I got up and I showered, and I did that because I’m going to go pick up my daughter from school. You know what I mean?
Motherhood gives me things to do and to look forward to. It didn’t motivate me to just keep going. It gave me the energy. They still have to be fed, right? You can feel sorry for yourself for a second, and then they’ll say things like, “Hey, I need to be dropped off at a volleyball game. I need this to happen. I need that to happen.” And you just pick yourself up, and you just go. And that has given me the push. To feel sorry for myself, but not to be in bed all day.
I look at life differently now
I get tired of being in pain; that’s like Groundhog Day. What do you have to look forward to? Pain. Right where I was five years ago compared to where I am now. It’s. It’s different. I’m tired of it. But there are such beautiful moments in there as well.
Five years ago, I created these boxes for my kids when I thought I wasn’t going to make it. I wrote letters for their first day of high school, graduation, marriage, picking their wedding dresses, all those things. I wrote all these letters. And this year, I was able to attend my oldest daughter’s graduation, and I was able to go in her box and pull out the letter that I wrote for her graduation.
I’m pulling other things out, too. For instance, I had bought them my beautiful personal perfume. I had bought each one a bottle because I wanted them to have it. And last Christmas I gave it to them because I don’t want this perfume to expire. It’s this amazing opportunity where I’m beginning to empty these boxes. And they’re hitting these milestones.
Surviving is just doing life. Just trying to do life like everybody else. Trying to find solutions. I still have to take care of my family. I still have to raise kids. And I still have to be a daughter to my aging mom. And I still have to be a friend to my friends. I still have to be all those things.
We all have a lot. Everybody has something. I look forward to every day. It’s like, “What am I today?” And I try to have something that I achieve.
What I want others to know
Know your ‘why.’ Know your ‘why.’ I’m a person of faith, but I’m also a mental therapist. I always used to say to people, “When you don’t have a ‘why,’ your reason for doing things, it’s hard to be motivated.”
It’s very easy to be fearful, right? I really don’t have a fear of dying, because everybody’s going to die. But I have a ‘why.’ And my ‘why’ is the people around me, my children, my nieces and nephews, and my mom. And so cancer is just a nuisance I deal with. It’s like allergies. I’m like, I gotta deal with this, but I don’t have to accomplish. There’s some grief for what I’ve lost in my life, but I still do counseling with friends and family. Friends call me. Maybe I’m not getting paid for it, but I’m still having a purpose for my life.
My friends call me, my kids call me. I have a women’s group, we meet every week and every month, and we talk about just our lives, and we’re invested in it. And I’m living life, right? I’m living life.
And if you know your reason and you just hold on to that, cancer just becomes that thing that you need to move aside so that you can get to where you need to be.
Inspired by Dalitso's story?
Share your story, too!
More IDC Breast Cancer Stories
Amelia L., IDC, Stage 1, ER/PR+, HER2-
Symptom: Lump found during self breast exam
Treatments: TC chemotherapy; lumpectomy, double mastectomy, reconstruction; Tamoxifen
Rachel Y., IDC, Stage 1B
Symptoms: None; caught by delayed mammogram
Treatments: Double mastectomy, neoadjuvant chemotherapy, hormone therapy Tamoxifen
Rach D., IDC, Stage 2, Triple Positive
Symptom: Lump in right breast
Treatments: Neoadjuvant chemotherapy, double mastectomy, targeted therapy, hormone therapy
Caitlin J., IDC, Stage 2B, ER/PR+
Symptom: Lump found on breast
Treatments: Lumpectomy, AC/T chemotherapy, radiation, hormone therapy (Lupron & Anastrozole)
Joy R., IDC, Stage 2, Triple Negative
Symptom: Lump in breast
Treatments: Chemotherapy, double mastectomy, hysterectomy
“Panic Only When Your Feet Hit the Sand”: Melanie’s Stage 4 High-Grade Serous Ovarian Cancer Story
Melanie was diagnosed with stage 4 ovarian cancer in the fall of 2022, and she speaks about the many ways her life has shifted since then in Hawaii, where surfing, yoga, and family once defined her day. Melanie shares openly how her relationship with her son Velzy became a lifeline. Instead of clinging to fear, she leaned into self-improvement and gratitude.
Interviewed by: Nikki Murphy
Edited by: Chris Sanchez
From the start, Melanie’s positive mental outlook shaped her approach to living with ovarian cancer. She acknowledged her BRCA1 mutation and the reality that screenings don’t always catch the disease early. When symptoms like abdominal swelling, stabbing side pain, and a persistent cough appeared, she confronted them head-on, taking ownership of her health by researching, seeking testing, and ultimately listening to her intuition. Even when the diagnosis confirmed stage 4, she faced it with calm focus, reminding herself of the same mantra she used while big wave surfing: “panic only when your feet hit the sand.”
The emotional work has been as important to her as physical treatment. Melanie describes feeling a surprising calm after reading survival statistics, and even excitement as she realized the possibilities for self-improvement. Even when her marriage ended, she embraced the opportunity to be more present for her son and to live more authentically. Letting go of conventional “hope” gave her the freedom to experience what each day offers without carrying the weight of future expectations.
Melanie’s advocacy is clear and empowering. She encourages others to filter outside noise and trust their medical teams, while also drawing boundaries that protect mental health. She is open about both the difficulty and the blessings of ovarian cancer: from surgical menopause and physical loss to the deeper healing of self-awareness and renewed love for her son. Each treatment cycle, each surf session, and each mindful moment all reflect her commitment to owning her experience: her health, her choices, and her life.
Watch Melanie’s video and scroll down to read the transcript of her interview. You’ll learn more about:
- The unexpected comfort she found when she refocused on her relationship with her young son
- How surfing mantras helped Melanie face stage 4 ovarian cancer with calm
- The moment she recognized that she had all twelve symptoms of ovarian cancer
- Why setting boundaries became a life-saving act of self-care
- Name: Melanie E.
- Diagnosis:
- High-Grade Serous Ovarian Cancer
- Staging:
- Stage 4
- Mutation:
- BRCA1
- Symptoms:
- Cough
- Stabbing pain in right rib area
- Bloating
- Frequent urination
- Moodiness
- Fatigue
- Treatments:
- Surgery: debulking surgery including full hysterectomy
- Chemotherapy
- Immunotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
- I'm Melanie
- I did genetic testing when I was a teenager
- What happened next
- The moment everything changed
- I had to change my mindset quickly
- My treatment plan
- I asked my doctor if we could skip the hysterectomy
- The plan moving forward
- I’m open to clinical trials
- The biggest challenge I’ve faced during my diagnosis
- What parenting looks like with cancer
- My advice to others
I’m Melanie
I’m from Hawaii. I have stage 4 ovarian cancer. And I was first diagnosed in the fall of 2022.
I did genetic testing when I was a teenager
I knew that I carried the genetic mutation BRCA1. It’s a genetic mutation that a lot of women have that puts them at high risk for breast and ovarian cancer. I knew this because of my family history. I had gotten tested because I knew my dad was positive for it. I got tested in 2014.
I had biannual screenings for both breast and ovarian cancer in March 2020. Everything was fine. However, my oncologist at the time had explained to me that the screenings that we were doing for ovarian cancer were like wearing your seatbelt in an airplane crash. Would they be helpful? Maybe. But the likelihood of them actually catching something early enough would not be very good.
A couple of months after that, I noticed a stabbing pain in my lower right side. I thought maybe it was appendicitis. And I just took a bunch of garlic. I’m a yogi, an all-natural type of girl. So I thought, “Oh, you know, if I have a slight infection in my appendix, I’ll just take the garlic.” And it actually did go away. Then I developed a dry cough, and I also got COVID within weeks of developing the cough, so I just thought it was probably lingering COVID symptoms.
At the time, my husband, my son Velzy, and I were on a surf trip. We were traveling in Central America — Nicaragua, Costa Rica. And around the last couple of weeks of our trip, my abdomen started swelling up. I would eat something that would normally give me a little bit of gas, like, say, beans, which are, of course, very common in Central America. But it wouldn’t be a little bit of gas; it would be excruciating. And I started eating less and less, and I noticed that my weight was dropping. But my abdomen remained distended most of the time. I thought that maybe I had a parasite. I also thought I could be pregnant; my hormones seemed crazy. I was nauseous too. I was reacting to situations in ways that I wouldn’t normally do. So I took a pregnancy test and found out that I wasn’t pregnant, because my cycle was weird too. So next, I thought I’d go on a parasite detox, because the likelihood that I had picked up a parasite in Central America was pretty high.
So, all that was going on, but in the back of my mind, I was also considering that I was genetically predisposed to ovarian cancer. So a few days before we were scheduled to return to Hawaii, I Googled the symptoms of ovarian cancer, and a list of twelve symptoms came up. I had every single one of them.
That’s when I had to just take a deep breath and go see the doctor.
What happened next
I made an appointment right away to see my oncologist and get testing done in Hawaii. The medical system is slow, and there was a week’s delay before I could get any testing done, so it was a long week of using my yoga practice of just trying to stay in the moment, trying to feel the sensation of fear in my body, trying not to let my thoughts spin out of control. Because I actually there was nothing more I could do until then. I had done my due diligence. After I made the appointment, everything else was out of my control.
I had a pelvic ultrasound. I remember the ultrasound tech seeming nervous within minutes of putting the gel on my belly, and she went, “I’m going to go get the doctor.” So she came back in with the doctor, and the doctor said that she would be sending the images to my oncologist and that she thought it was related to my BRCA1 mutation. That afternoon, I had a blood test, and my oncologist’s office called me and said that they needed to see me in person the next morning. And so that’s when I was like, “Okay. Here we go.”
The moment everything changed
The ovarian cancer blood marker test is called CA-125. That evening, after getting the ultrasound and the CA-125, I was able to open the MyChart portal. I saw that the blood markers were ten times higher than normal. So I kind of knew right then.
The next morning, I called my friend to come with me to the oncologist. Since that was still the time of the pandemic, I couldn’t bring my son with me to the doctor, and my husband stayed home with my son. The gynecologist was saying, “This is what we think it is.” We didn’t have anything concrete yet at the time; no biopsy had been done, but he had done the exam, and he had felt nodules. And he had seen hundreds of cases like. mine.
I was grateful for the way that he said it. But I was also thankful for the fact that my friend said, “Just tell us.” He said, “We think this is ovarian cancer. We think it’s in your lungs, too, because of your cough and your other symptoms, the pleural involvement. So it’s most likely stage 3 or 4.”
In that moment, I was pretty calm. You know, nobody’s completely calm when they hear cancer. That’s a heavy word. But because of my background in surfing, I’ve trained myself to stay calm in very scary situations. There’s a mantra I use in surfing. “You can panic when your feet hit the sand.” It’s good to feel all of those emotions, but not right now, not in the moment.
So I took deep breaths and tried to remember everything he was telling me. And then my friend and I walked outside the hospital. That’s when we just melted down together.
I didn’t tell anybody except for my parents at the time because I was scheduled for surgery two days later, as well as a CT. We wanted a surgery because in Hawaii, it was impossible to get me in for a biopsy, but it was much easier for the doctor to schedule a laparotomy. This would involve him sticking a scope in to see what was going on, as well as taking biopsies at the same time. It’s just the way the medical system is here — things can be a little bit slow, a little bit turned around. So I was so grateful that he did that.
Days later, we got the official biopsy results. And then I officially knew what type of ovarian cancer I had, what stage, and what grade, and all of that. And it didn’t come as a surprise at that point.
I had to change my mindset quickly
Perhaps my experience is similar to others’, but it may also be different for various reasons. Many conflicting things were happening. Obviously, there was terror. I remember opening the MyChart portal and seeing what was there.
My immediate reaction was like, “Let’s start juggling this. What’s the prognosis?” Blah, blah, blah. And then I just sat there, and I was like, “Take a moment. Feel this.” I remember feeling scared and out of control, and grasping at control. But I also remember this growing sense of curiosity and even excitement.
I’ve been through two major health challenges before this one. The first was an eating disorder, and the second was an injury that kept me mostly in bed for months. Though both of those things changed my life for the better in enforceable ways, and I would not go back to how I was before them. If I had the choice to not have that eating disorder or that injury, I wouldn’t choose to because they happened for the highest good. I’m happy with who I became and what I learned through them.
So when I saw that I had metastatic cancer, for which the five-year survival rate was 17%, I thought, “Game on.” I’m about to go through the hardest thing I’ve ever been through, and I just had this peace that it was going to be for my highest good — even if I didn’t survive it. I felt that something was going to come out of this, whether for me or for my family, for my child, for my parents and my siblings, or for the world in general. That good could not have come had I not had cancer.
I don’t want anyone hearing this to feel like they should feel that way, too, or that it’s some kind of spiritual bypassing. There was terror, and even talking about it now, I’m very emotional. like you know. I just had this peace and knowledge that came from another place that this was going to be for my highest good.
And I was excited. I’ve always loved a challenge. That’s just the type of person that I am. So, yeah, looking at those results in black and white, I felt like it was another big wave to surf.
My treatment plan
Right away, my doctor talked to me about the standard of care. He said, “You’re going to need neoadjuvant chemotherapy, four rounds of chemo. Then a surgery, then four more rounds of chemo.”
He also went through the likelihood of the response rate. He said I was likely to respond, which is so interesting because I didn’t understand the difference between response rate and five-year survival rate. So he explained to me, “We’re really good at putting this kind of cancer into remission. We’re just not really good at curing it.” Yeah, I was hesitant. I mean, I didn’t take aspirin before this if I could help it. I didn’t take antibiotics. I always treated myself with alternatives, Chinese herbs, and things like that.
But in this case, I was able to decide quickly. The doctor said, “You know what, this is stage 4, this is very serious. We don’t have time to mess around here.” He told me that the doubling time of ovarian cancer is twenty-eight days, and so they’re really wasn’t a lot of time for hesitation.
Initially, I thought, “Oh, do I really want to do this?” But within a few minutes, I decided. “We’re doing this.” I felt comfortable with my doctor. I really loved him. So I went ahead and did my first chemo there as well as the surgery.
I asked my doctor many times if it would be possible to do my debulking surgery laparoscopically, since I didn’t want to be split open top to bottom, given that I am an athlete, and that’s an important part of my life. He did a wonderful job; my recovery was much easier than I thought it would be.
However, the cancer came back months later. I was hesitant to do my chemo again in Hawaii, not necessarily because of the medical system, although I did want a second opinion because of the second occurrence of cancer. The more the treatments begin to branch off, the first line is always the same, and the second line is very similar. But then, with the third and the fourth, things get more complicated. And the biggest thing was the lack of support. I don’t have any family here, and through all of this, my husband and I struggled to find a rhythm together and also struggled financially. So I decided for my second line to go to the mainland and live with my family in Michigan, where there’s very good medical care. They call it the medical mile. I do feel like, at some point, as far as the availability of clinical trials and doctors who are researching the cutting-edge treatments, there are definitely more on the mainland.
I asked my doctor if we could skip the hysterectomy
I didn’t want menopause. And I also love the rhythm that my cycle puts into my life and the way that I’ve organized the flow of my month around my cycle. I was afraid that I would lose some sort of femininity if I had a hysterectomy. I was also afraid of being cut open and the recovery time, since I was surfing; after a surgery like that, you can’t lift more than five pounds for 12 weeks. I thought that I might not recover to 95% of my old level or even 50% of it. I was really afraid.
I went on a Facebook group for women with ovarian cancer, and one part of my body that I have always loved is my abdomen. And I asked if anyone was willing to share their photos of their surgery scars. I was so blown away by these women. Some were elderly, but some weren’t — they might even have been Instagram models in great shape, and proud of their scars up and down their abdominal areas. They were so proud of what their bodies endured and how their bodies showed up for them and helped them to move on.
So I was so much more comfortable with what was about to happen. But I still begged my doctor to do the operation laparoscopically, and he obliged me.
I remember that day, me going into surgery and saying goodbye to my best friend, who held my hand right until I went in the door. And I was terrified when I was about to be put under. Of course, I fell asleep within seconds. When I woke up, I was already in my recovery room, where I saw that there was a bassinet and signs on the wall about breastfeeding positions. I was in a labor and delivery room. A nurse came in and I asked her about it, and she said, “This is where we put all the people with the lady bits.” And I said, “But I don’t have lady bits anymore.”
I was devastated and still am today, every time I see a mom with a baby. But at the same time, I’m relieved. My child was so much work. Giving birth was so brutal. And now, I don’t have to go through that again. There are other options for children.
That being said, I will never grow a child inside myself again. I will never give birth again. I will never breastfeed again. And those are losses. Those are big losses.
The plan moving forward
I’m on an oral chemo medication, a PARP inhibitor. It didn’t seem to be doing its job, so we added Avastin, a medication that stops blood vessels from forming and basically makes the cancer more susceptible. Unfortunately, it also makes my whole body more susceptible to the other oral Chemo. So I get an infusion every three weeks and take oral chemo every day.
Right now, I’m stable. I just had a CT scan this weekend, and nothing has progressed in the last three months. So the treatment that I am on is at least keeping me stable, and I honestly feel pretty good on it.
I’m not where I would be if I didn’t have cancer and wasn’t on any treatment. But I still surf and work out daily. I teach yoga. I do massage therapy. I keep up with my son. It’s a lot, and most of the time, I have the energy for it. Of course, there are things like migraines, constipation, neuropathy — all of these things that come along with chemo, but maybe they’ve just become part of my life.
I’m open to clinical trials
At this point, since my cancer is stable, I don’t have to make that decision. But somewhere down the road. It will be decision time. And if I have to make that decision. I will need to leave.
There is an option with some of these trials. There are really good trials in California, and the flight to California is quite easy, and it would be like a once every three weeks type of thing.
And when you get a diagnosis like cancer, you notice the benevolence of humanity. So many friends have come out of the woodwork and have told me things like, “You can have my place. You can have my car. I will help you with airfare.” So if it comes to that, I’m prepared to make that call or go back to Michigan and be with my family in the end. I know that if we ever get to the point that treatment stops working, I would end up in Michigan with my family.
There definitely are options, and they’re on my radar.
The biggest challenge I’ve faced during my diagnosis
My marriage has actually been the hardest thing. After my first line of treatment, it wasn’t anything new. It happened when my son was a child. My husband has a mental illness and didn’t have the capacity to show up to be the father and the husband that I needed him to be with a child. That was that much work. And I guess a part of me really hoped that a diagnosis of terminal cancer would be enough to shake him and get him off the couch, and it wasn’t.
When my cancer came back for the second time, I had already agreed to myself that if my cancer returned, I would not do chemo with him as my main support system. I would need to go to Michigan and be with my family. Which is a big decision, given that surfing is a giant part of my life and being outdoors and all of that.
So when the cancer did come back, along with many other feelings, I felt relief. Because I finally had a reason big enough to leave him. And after treatment, we separated.
Honestly, drawing boundaries and not being codependent have been the biggest lessons of cancer. And that is how I have changed the most. And I honestly feel that menopause has been such a blessing. Talk to any woman who has gone through menopause, and she might tell you that one of the things that she notices is that people pleasing is reduced greatly. This has been the spiritual work for me.
I believe this is cancer came to me to level me up and help me to grow the spine that I needed to protect my energy. So that I am nourishing myself and nourishing my son and not nourishing people who have the capacity to nourish themselves. And so that is the biggest change.
What parenting looks like with cancer
My son just started kindergarten, and it is a breath of fresh air. But until that time, honestly, I relied on caffeine a lot, because he would drive me out of bed way before I was ready to get up, and I generally go to sleep with him at 8 pm, and by 6 am, I’m a rise and shine mom. But I could use 12 hours of sleep a day easily, and even more when I was taking chemo infusions. So we always napped together when he was still taking naps.
I did pay a lot of babysitters. I did have to humble myself and ask a lot of friends and neighbors. “Can you just take him for an hour?” And that was really hard because a lot of times, I was asking a neighbor for help while my husband was available to help, but not willing.”
Now that he’s in school. I have those six hours to spare for what I need to do to make my house feel like a nice place. So I can relax, meditate, lie down, and close my eyes for twenty minutes. So that when he comes home, I am fully his and I am present with him. I still have to have afternoon caffeine to get me through like that.
But the biggest thing that’s changed with parenting is how much I appreciate the gift of being able to parent. Lying in bed with him at night should take him like an hour to fall asleep, and I would want him to sleep right away so I could have some me time. Now, when that happens, I can’t say I don’t feel that. But I catch myself and I go, “Melanie. This is amazing, you are playing in bed with this little thing that loves you so much. Can you just let your chest rise and fall with his?”
It’s so much easier now to just show in those moments and appreciate sitting on the floor with my back hurting, playing with Legos. I can actually really love and appreciate that in a way that I never could have if it hadn’t been for the diagnosis.
My advice to others
The answer can be a blessing, at the same time as being the most awful thing. It has been for me. It’s changed me. It’s shaped me. It showed me the goodness of humanity. I have stronger relationships. I love my body more than I ever have. I appreciate my son more than I ever have. My anxiety is all but gone. I am a better person for having had cancer and having been treated for it. Honestly, it has never been worse than being pregnant.
This is my experience. It doesn’t have to be brutal. There are moments, of course, that it is brutal, and other moments when it’s just not a big deal.
And so I would want anybody who is newly diagnosed or worried about a diagnosis to just know that it doesn’t have to be awful. And that you can do it. And that it has hidden blessings as well.
Inspired by Melanie's story?
Share your story, too!
More High-Grade Serous Ovarian Cancer Stories
Randalynn V., High-Grade Serous Carcinoma, Stage 1C
Symptoms: Pulling sensation when emptying bladder; abdominal pain
Treatments: Chemotherapy (carboplatin & paclitaxel), surgery
...
Shirley P., High-Grade Serous Carcinoma, Stage 3C, BRCA1+
Symptoms: Pulling sensation when emptying bladder; abdominal pain
Treatments: Chemotherapy (carboplatin & paclitaxel), de-bulking surgery, PARP inhibitors
...
Suzann B., High-Grade Serous Carcinoma, Stage 3C, BRCA1+
Symptoms: Inability to urinate
Treatments: Chemotherapy, de-bulking surgery, total hysterectomy
...
Susan R., High-Grade Serous Ovarian Cancer, Stage 4
Symptoms: Pulling sensation when emptying bladder, abdominal pain
Treatments: Chemotherapy (carboplatin & paclitaxel), surgery
...
Sara I., High-Grade Serous & Clear Cell Carcinoma, Stage 3A
Symptoms: Random sharp pains, unrelated scan showed ovarian cyst
Treatments: Debulking surgery, chemotherapy (carboplatin & paclitaxel), PARP inhibitors (clinical trial)
...
Finding Comfort: How Marissa Navigates Stage 4 BRCA2+ ILC Breast Cancer
This is Marissa’s experience with stage 4 breast cancer. She first noticed that something was wrong when she felt unusually tired, had restless legs leading to sudden painful cramps, and experienced hot flashes at night. Like any busy mom with two little kids, she brushed these symptoms off at first, until a lump in her right breast prompted her to see her doctor. After multiple scans and a biopsy, Marissa learned she had stage 2 invasive lobular carcinoma and carried the BRCA2 gene.
Interviewed by: Nikki Murphy
Edited by: Chris Sanchez
At just 31, with a young family and a recent move, Marissa felt overwhelmed. She found it complicated and challenging to transition into treatment; traditional options like chemotherapy and radiation scared her, especially with all the potential side effects. Initially, she chose integrative care, hoping to support her body naturally. But nine months later, scans showed that the breast cancer had spread to her bones, elevating her to stage 4. This became a turning point; she began hormone therapy and low-dose chemo, and she saw her breast tumors shrink. Looking back, she openly shares the regret of delaying certain treatments, but she also stresses how vital it is to feel comfortable and supported in your care decisions.
Through it all, family has been Marissa’s anchor. Her mom and stepdad even moved states to help with childcare, homeschooling, and daily life, allowing her to focus on her health. Being a mom with cancer comes with heartbreaking worries, which she tries to counter by writing letters and recording her voice for her kids, but it also inspires her to cherish every moment with them. She admits some days are tough with bone aches, fatigue, and migraines, but other days are filled with laughter and gratitude.
Marissa wants others to know that metastatic breast cancer isn’t simple. Treatments work differently for everyone, and emotional support is just as important as medical care. She encourages anyone navigating a diagnosis to seek multiple opinions and choose the path that gives them peace. Comfort, whether from family, a supportive medical team, or a healing space, makes a world of difference.
Watch Marissa’s video and scroll down for the transcript of her interview to delve into:
- A young mom’s journey from worrisome symptoms to a life-changing diagnosis
- How one woman balances motherhood and metastatic breast cancer with grace
- The emotional turning point that shifted Marissa’s treatment approach
- Why comfort and community became her lifeline through stage 4 breast cancer
- Marissa’s honest reflections on regret, resilience, and cherishing every moment
- Name: Marissa T.
- Diagnosis:
- BRCA2+ ILC (Invasive Lobular Carcinoma) Breast Cancer
- Age at Diagnosis:
- 31
- Staging:
- Initially stage 2, progressed to stage 4
- Symptoms:
- Appearance of lump in right breast
- Significant fatigue
- Hot flashes at night
- Leg restlessness leading to sudden, unexpected leg muscle cramps
- Treatments:
- Chemotherapy
- Hormone therapy
- PARP inhibitor
- Integrative medicine
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
- My name is Marissa
- When I first noticed something was wrong
- Genetic testing revealed that I have the BRCA2 gene
- My treatment options were limited, so I pursued integrative care
- I got a scan 9 months later. The cancer had spread
- How I’m handling the side effects of chemo
- The hardest challenge I’m facing
- My diagnosis saved my marriage
- What people don’t understand about stage 4 breast cancer
- My advice to others
My name is Marissa
I was diagnosed with invasive lobular carcinoma breast cancer last year. Which would have been February 17th, 2024.
When I first noticed something was wrong
I felt very fatigued, and I was getting hot flashes at night. My legs were restless all the time, so bad that I would pull a muscle. Just giving myself Charley horses at night. I didn’t really think too much of it. I had two small children, and I just thought this was normal. You know, being a mom of little kids and not sleeping well and all those things.
But what really topped it off was that I felt a lump in my right breast, and I had asked my husband to feel it. And he did. I said, “Does this feel normal? And he said, “No, you need to go get that checked out.”
So I went to my primary care physician, and she did a physical exam, which led to a mammogram and ultrasound. I did three of those in one visit. So it was a lot of back and forth. They had a really hard time just realizing what they were looking at. So they decided it would be better for me to get a biopsy done just to confirm if anything was going on.
So I did the biopsy a few days after my mammogram and ultrasound. The biopsy confirmed that it was a stage 2 invasive lobular carcinoma in my right breast. And then I also had some lymph nodes that tested positive as well.
Genetic testing revealed that I have the BRCA2 gene
This is how I found out that I had cancer.
My primary care physician called me on the night of February 17th. I’ll never forget it. She said, “I got your results back. It looks like you have breast cancer. But it looks like it’s in an early stage. So we’re going to set an appointment with an oncologist and a surgeon, and they’ll go over all of your testing with you.”
I set that appointment, and it was a three-hour-long appointment. They went over my diagnosis and the treatment plan that they had for me, which was a double mastectomy if I carried a gene for breast cancer.
My treatment options were limited, so I pursued integrative care
They were skeptical of chemo because lobular carcinoma doesn’t really respond to chemo. So it would have just been hormone therapy, surgery, and radiation. And that would have been the best plan for me.
But I felt very nervous about it at the time. I was 31 years old. My kids were still really young, and we had actually just moved here from Michigan about a year and a half before all of this happened. We were just getting settled into our new life in Arizona, adjusting to everything.
I wanted to do some research to see if there was any approach that I would be more comfortable with. But then, it was as effective to look for other options and get a second opinion from other clinics. So that’s what I did. And I found the clinic that I’m going to. It’s integrative.
I declined all the treatments that I was given because I was just very scared of the side effects from the hormone blockers, including risking osteoporosis and damaging my bones. Because I know that those are potential side effects. I was also scared of the chemo and the radiation. You know, when you do research, you read a lot, and you hear a lot of bad things. It made me really nervous to do those things.
But I also had a very rare situation happen. My BRCA2 gene mutated seven times inside my body, and those genes were resistant to one of the medications I was on. I was on a PARP inhibitor. It’s for BRCA2 and HER2-negative subtypes. So I was on that medicine for about four months before my BRCA2 gene mutated. And basically, the drug was useless at that point.
I got a scan 9 months later. The cancer had spread
The scan showed progression into my bones, which put me at stage 4. I feel like this had happened because I was just super stubborn. I was determined to heal my body without hormone therapy and chemo, radiation. I do regret not starting the hormone therapy much sooner. Had I done that, I probably wouldn’t have gotten to stage 4. Essentially, once I hit stage 4, I decided that I needed to go on the hormone blockers. And as soon as I got on the hormone blockers, a month later, my breast tumors were gone. And I just had the bone metastasis and the lymph nodes to worry about. Had I done hormone blockers sooner, it probably wouldn’t have spread to the bones. I do regret that.
So after that, I started a low-dose oral chemotherapy. And we are hoping it will do something with the bones. It’s a low dose, so hopefully it doesn’t damage my good cells, and it will be enough to wipe out the cancer cells. But it’s just an experiment, because we know that lobular carcinoma doesn’t really respond to chemo. We decided to give it a chance. And I have been on that since March this year.
So I have been on this treatment regimen for a while now, and I feel overall great. It’s just been a challenge trying to figure out what is going to get to my bones now.
How I’m handling the side effects of chemo
I feel like the most I’ve experienced is fatigue. And I try to counter this by taking vitamins. Lots of vitamins that my body needs. I drink extra water, electrolytes, and minerals. I also exercise every day just to keep my body and bones strong.
I think the most side effects I get are from the hormone blockers. Just being in early menopause, dealing with the hot flashes, and, it’s embarrassing to say, but your sweat smells way different when your hormones are blocked, and it’s not pleasant. So I shower multiple times a day and change my clothes often. I had to buy a neck fan just to help keep myself cool. And my bones ache extra from the hormone blockers.
The hardest challenge I’m facing
That’s getting through the day with the aches and the pains in my bones and fighting migraines that I get due to some lesions in my skull. Being a mom becomes a little bit more challenging when you’re experiencing pain. It’s hard to be super patient all the time and have energy to keep up with my kids all the time. But I do the best I can. I go with the flow every day.
Some days are better than others. I’m managing with the help of my mom and my stepdad. They sold their house and moved here from Michigan seven months ago. My stepdad got a job, and my mom doesn’t work. She takes care of my kids all day while my husband works. He’s just started truck driving, so he’s gone a lot. Unfortunately, it was very hard for him to work when I was gone for treatment, and it really did put a huge financial strain on our family for a while. We lost two vehicles, and we were just trying to figure out how we’re going to juggle everything. With him earning just one income, it was just about enough until you add medical expenses and me not being able to work. So, extra expenses on top of not having an income were very hard.
My mom teaches the kids while I’m not able to school them right now. She was a preschool teacher for a long time. So it’s right up her alley. She’s been my rock through it all. She cleans and she helps prep meals, and watches the kids, too. And now my husband’s able to work because she’s able to be with the kids every day.
It’s been a big blessing to our family to have my mom around. I wouldn’t be able to do this without her here.
My diagnosis saved my marriage
I feel like there was a lot of stress moving to a new state. Being a mom with little kids and my husband working added extra stress. I didn’t have any family out here, so I feel like with all the emotions we were going through, I think we hit a hard point in our relationship, trying to figure out how we can have time for ourselves and spend more time together.
I feel like when I got diagnosed, my husband and I had a realization that you can’t plan anything. Life can come to an end anytime for anybody, with or without disease. It’s precious to just value your family and make memories with them. I’ve learned that everything that I do with my family makes memories for them. And I cherish everything that I do with them so much more now than I ever have.
The way that I look at life is completely different, and my husband feels the same way. I feel more appreciated. It was a big eye-opener for both of us. It really did save our relationship.
What people don’t understand about stage 4 breast cancer
It’s not just, “Okay, you do this, do that, and you’re good. It’s done.” It doesn’t happen like that.
Everybody’s bodies react differently. There’s so much to learn scientifically about what goes on in our bodies. Sometimes our bodies don’t cooperate with meds, and then we run out of options. I mean, there’s only so many lines of treatment that we can utilize before we don’t have anything left.
I realized that it’s very difficult physically and emotionally. Just the fear of the unknown, not knowing what’s going on inside you all the time, and fearing all the what-ifs. What if it’s spreading? What if I don’t respond well to the treatment? And what if I’m not going to be around much longer?
I’ve had those thoughts myself before I got more confident and comfortable with my medical team. I wrote letters to my children because I didn’t know how long I was going to be around. I did build-a-bears with my voice recorded in them because I wanted them to have my voice, and I made them blankets because I just felt like I wanted them to be able to have something special that I made them.
I have faced so many emotional obstacles. My kids are everything to me, and I dedicate all my time to raising them, providing for them. I cherish that more than anything. I love being a mom, and my kids mean everything to me. So the thought of just me disappearing out of their lives really ripped me apart.
I think that a lot of people really don’t know much about cancer. It’s hard for them to sympathize with patients because they just don’t know what it’s really like unless they’ve been around people with it or they’re going through it themselves. I just think that the way many people think of cancer is that you just can do chemo and surgery, and you should be okay. Those things are so hard on your body, too.
It’s hard to get through the days when you feel so tired and you’re in pain. Sometimes, you feel like you’re a burden on the people around you.
My advice to others
Get multiple opinions and do whatever you feel in your gut or in your heart that you’re going to have the most peace with and feel the most comfortable. Wherever you feel comfortable is probably where you should be.
I feel like if I were in a place where I didn’t feel comforted or I didn’t have people who were there supporting me, it would not be a place I would want to be in. That’s very important for recovery and healing: the comfort that people bring you, the peace of mind that your medical team brings you if they’re there to support you, determined to help you recover.
Inspired by Marissa's story?
Share your story, too!
More ILC Breast Cancer Stories
Marissa T., ILC, Stage 4, BRCA2+
Symptoms: Appearance of lump in right breast, significant fatigue, hot flashes at night, leg restlessness leading to sudden, unexpected leg muscle cramps
Treatments: Chemotherapy, hormone therapy, PARP inhibitor, integrative medicine
Nikoo M., ILC, Stage 4 (Metastatic)
Symptoms: Gastrointestinal issues, food sensitivities, nausea
Treatments: Targeted therapy, hormone therapy
Kathleen M., ILC
Symptoms: Bloody nipple discharge, appearance of “shadow” during breast ultrasound
Treatments: Surgery (mastectomy), hormone therapy
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.
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, she 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
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.
- Hi, I'm McKenna
- How I knew something was off
- I went to the doctor
- Why I needed surgery
- The moment everything changed
- My treatment plan
- I did fertility preservation
- I took a bucket list trip before I started treatment
- I decided to stop treatment
- I started proton radiation
- How I coped with my diagnosis
- I went into being no evidence of disease
- How my diagnosis changed me
- How I spread awareness
- 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 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 being 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.
Inspired by McKenna's story?
Share your story, too!
More Synovial Sarcoma Stories
Kara L., Synovial Sarcoma, Stage 1B
Symptoms: Pain behind left knee, needle-like sensation in left foot
Treatments: Surgery to remove what was thought to be benign tumor, chemotherapy, final surgery, radiation (36 sessions)
...
Jillian J., Synovial Sarcoma, Stage 3
Symptom: Pain in leg for over 15 years
Treatments: Surgeries (tumor resection, thoracotomy)
...
Marisa C., Synovial Sarcoma, Stage 4
Symptom: Small bump on the foot (stable for years, then grew during pregnancy), pain when pressed
Treatments: Surgeries (below-knee amputation, pulmonary wedge resections, segmentectomy), chemotherapy, radiation (lungs & hip)
...
Julie K., High-Grade Poorly Differentiated Spindle Cell Synovial Sarcoma, Stage 4
Symptoms: Chest and back pain after car accident, trouble breathing
Treatments: Chemotherapy, surgeries (lung resection, video-assisted thoracoscopic surgery or VATS, neurectomy, rib removal), radiation therapy (CyberKnife)
...
McKenna A., Synovial Sarcoma, Stage 3 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
...