Author: Chris Sanchez

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Cancers Chemotherapy Head and Neck Cancer Metastatic Metastatic Patient Stories Proton therapy Radiation Therapy Squamous Cell Carcinoma Surgery Tongue Cancer Total glossectomy Treatments

Learning to Talk Again: Beth’s Stage 4 Tongue Cancer Story

Beth R. tongue cancer

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.

Beth R. tongue cancer

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
Beth R. tongue cancer
Beth R. tongue cancer
Beth R. tongue cancer
Beth R. tongue cancer
Beth R. tongue cancer
Beth R. tongue cancer
Beth R. tongue cancer

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

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

Transcript of Beth’s Interview
  1. Hi. My name is Beth!
  2. When I first noticed something was “off”
  3. The moment everything changed
  4. Exploring my treatment options
  5. The treatment path I took 
  6. My symptoms came back
  7. Transferring my care to MD Anderson
  8. What my surgery looked like
  9. I had to do more treatment
  10. Losing most of my tongue impacts my everyday life
  11. Learning how to eat again
  12. How cancer changed me
  13. 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.

Beth R. tongue cancer
Thank you for sharing your story, Beth!

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Categories
Antibody-drug conjugate Breast Cancer Chemotherapy Chemotherapy port installation Hyperbaric oxygen Lymphatic drainage Mastectomy Metastatic Patient Stories Surgery Targeted Therapy Treatments triple negative (TNBC)

Finding Strength Through Art: Nicole’s Stage 4 Triple-Negative Breast Cancer Experience

Nicole B. triple-negative breast cancer

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 B. triple-negative breast cancer

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
Nicole B. triple-negative breast cancer
Nicole B. triple-negative breast cancer
Nicole B. triple-negative breast cancer
Nicole B. triple-negative breast cancer
Nicole B. triple-negative breast cancer
Nicole B. triple-negative breast cancer
Nicole B. triple-negative breast cancer
Nicole B. triple-negative breast cancer
Nicole B. triple-negative breast cancer
Nicole B. triple-negative breast cancer
Nicole B. triple-negative breast cancer
Nicole B. triple-negative breast cancer

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

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

Transcript of Nicole’s Interview
  1. My name is Nicole
  2. Discovering my passion for jewelry
  3. When I first noticed that something was wrong
  4. Scheduling the mammogram
  5. The waiting game
  6. The diagnosis: stage 4 triple-negative breast cancer
  7. Beginning treatment and facing complications
  8. I recently had a mastectomy
  9. Continuing treatment and finding hope
  10. How creativity keeps me alive
  11. Stage 4 is not a death sentence
  12. 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.

Nicole B. triple-negative breast cancer
Thank you for sharing your story, Nicole!

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More Triple-Negative Breast Cancer Stories

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



Symptoms: Bruising sensation in the breast, soft lump

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

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



Symptom: Four lumps on the side of the left breast

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

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



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

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



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

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

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



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

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




Symptom: Lump in breast



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

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



Symptom: Lump in left breast

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

Symptom: Pea-sized lump

Treatments: Chemotherapy, surgeries (bilateral mastectomy, reconstruction)

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



Symptom: Lump in left breast

Treatments: Chemotherapy, surgery (double mastectomy, oophorectomy, hysterectomy, breast reconstruction)
Categories
Breast Cancer Clinical Trials HER2-Positive Hormone Therapies Hysterectomy Invasive Ductal Carcinoma Metastatic Patient Stories Radiation Therapy Surgery Treatments Vertebroplasty

“Know Your ‘Why’”: Dalitso Embraces Life Through Stage 4 HER2+ IDC Breast Cancer

Dalitso N. breast cancer

“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.

Dalitso N. invasive ductal carcinoma breast cancer

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
Dalitso N. invasive ductal carcinoma breast cancer
Dalitso N. invasive ductal carcinoma breast cancer
Dalitso N. invasive ductal carcinoma breast cancer
Dalitso N. invasive ductal carcinoma breast cancer
Dalitso N. invasive ductal carcinoma breast cancer
Dalitso N. invasive ductal carcinoma breast cancer
Dalitso N. invasive ductal carcinoma breast cancer
Dalitso N. invasive ductal carcinoma breast cancer

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

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

Transcript of Dalitso’s Interview
  1. Hi. My name is Dalitso
  2. Eight years before my diagnosis, I noticed fatty tissue
  3. I had a second mammogram, and it revealed breast cancer
  4. When I heard I had stage 4 breast cancer
  5. I started radiation
  6. I was experiencing side effects from radiation 
  7. I started hormone therapy
  8. I went on hospice
  9. I wanted to travel
  10. My cancer spread
  11. I started a new treatment plan
  12. I was declared No Evidence of Disease
  13. How my diagnosis has affected me being a mother
  14. I look at life differently now
  15. 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.

Dalitso N. invasive ductal carcinoma breast cancer
Thank you for sharing your story, Dalitso!

Inspired by Dalitso's story?

Share your story, too!

More IDC Breast Cancer Stories

Amelia

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 smiling against fall leaves

Rach D., IDC, Stage 2, Triple Positive



Symptom: Lump in right breast

Treatments: Neoadjuvant chemotherapy, double mastectomy, targeted therapy, hormone therapy
Caitlin

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
Categories
BRCA1 Chemotherapy Debulking High-Grade Serous Hysterectomy (full) Immunotherapy Ovarian Patient Stories Surgery Treatments

“Panic Only When Your Feet Hit the Sand”: Melanie’s Stage 4 Ovarian Cancer Story

Melanie E. ovarian cancer

“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.”

Melanie E. stage 4 ovarian cancer

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
Melanie E. stage 4 ovarian cancer
Melanie E. stage 4 ovarian cancer
Melanie E. stage 4 ovarian cancer
Melanie E. stage 4 ovarian cancer
Melanie E. stage 4 ovarian cancer
Melanie E. stage 4 ovarian cancer
Melanie E. stage 4 ovarian cancer
Melanie E. stage 4 ovarian cancer
Melanie E. stage 4 ovarian cancer

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

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

Transcript of Melanie’s Interview
  1. I'm Melanie
  2. I did genetic testing when I was a teenager
  3. What happened next
  4. The moment everything changed
  5. I had to change my mindset quickly
  6. My treatment plan
  7. I asked my doctor if we could skip the hysterectomy
  8. The plan moving forward
  9. I’m open to clinical trials
  10. The biggest challenge I’ve faced during my diagnosis
  11. What parenting looks like with cancer
  12. 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.

Melanie E. stage 4 ovarian cancer
Thank you for sharing your story, Melanie!

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Categories
BRCA2 Breast Cancer Chemotherapy Integrative Integrative Therapies Invasive Lobular Carcinoma Metastatic PARP Inhibitor Patient Stories Treatments

Finding Comfort: How Marissa Navigates Stage 4 BRCA2+ ILC Breast Cancer

Marissa S. breast cancer

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.

Marissa S. breast cancer

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
Marissa S. breast cancer
Marissa S. breast cancer
Marissa S. breast cancer
Marissa S. breast cancer
Marissa S. breast cancer
Marissa S. breast cancer

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

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

Transcript of Marissa’s Interview
  1. My name is Marissa
  2. When I first noticed something was wrong
  3. Genetic testing revealed that I have the BRCA2 gene
  4. My treatment options were limited, so I pursued integrative care
  5. I got a scan 9 months later. The cancer had spread
  6. How I’m handling the side effects of chemo
  7. The hardest challenge I’m facing
  8. My diagnosis saved my marriage
  9. What people don’t understand about stage 4 breast cancer
  10. 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.

Marissa S. breast cancer
Thank you for sharing your story, Marissa!

Inspired by Marissa's story?

Share your story, too!

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Marissa S. breast cancer

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. lobular breast cancer

Nikoo M., ILC, Stage 4 (Metastatic)



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Kathleen M. lobular breast cancer

Kathleen M., ILC



Symptoms: Bloody nipple discharge, appearance of “shadow” during breast ultrasound

Treatments: Surgery (mastectomy), hormone therapy
Megan-Claire C., Stage 2 Breast Cancer Diagnosis: Stage 2 Breast Cancer Symptoms: Green bruises, sudden weight gain, brittle hair, zit on breast, mass in breast Treatment: Chemotherapy, surgeries, radiotherapy, hormone therapies
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Chemotherapy Integrative Integrative Therapies Patient Stories Proton therapy Radiation Therapy Sarcoma Soft Tissue Sarcoma Surgery Synovial Sarcoma Treatments Tumor excision

Listening to Her Body Led McKenna Through Stage 3 Synovial Sarcoma

McKenna A. synovial sarcoma

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

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

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

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

McKenna A. synovial sarcoma

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

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

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

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

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

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

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

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

Hi, I’m McKenna

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

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

How I knew something was off

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

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

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

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

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

I went to the doctor

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

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

Why I needed surgery

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

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

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

The moment everything changed

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

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

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

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

My treatment plan

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

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

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

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

I did fertility preservation

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

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

I took a bucket list trip before I started treatment 

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

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

I decided to stop treatment

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

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

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

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

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

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

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

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

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

I started proton radiation

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

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

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

How I coped with my diagnosis

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

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

I went into no evidence of disease

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

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

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

How my diagnosis changed me

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

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

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

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

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

How I spread awareness

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

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

What I want others to know

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

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

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

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

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

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Categories
Cancers Chemotherapy Immunotherapy Metastatic Metastatic Patient Stories Stomach Cancer Treatments

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

Andy G. stomach cancer

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

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

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

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

Andy G. stomach cancer

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

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

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

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

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

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

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

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

My name is Andy

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

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

How I knew something was off

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

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

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

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

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

When I heard the words “you have cancer”

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

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

How I found my care team

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

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

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

I was not eligible for surgery

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

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

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

I had side effects from chemotherapy

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

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

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

How my diagnosis affected my everyday life

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

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

The hardest part of my diagnosis

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

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

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

I went into remission

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

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

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

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

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

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

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

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

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

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

Definitely another experience that I’ll never forget.

I look at life differently now

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

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

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

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

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

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

My support system

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

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

How I spread awareness

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

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

I go on cancer retreats

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

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

I am monitored often

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

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

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

What survivorship looks like to me

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

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

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

What I want others to know

Don’t give up. And find hope.

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

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

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

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

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Jeff S., Stomach Cancer, Stage 4



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

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



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

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

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



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

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

Mary Jane B., Stomach Cancer, Stage 4



Symptoms: Fatigue, night sweats, sharp back pain, bloody stool, unexplained weight gain, nausea and vomiting, chest pain, shortness of breath, severe anemia, loss of appetite and early satiety, sudden and intermittent dry cough, persistent stomachache, distended abdomen, frequent headache, forgetfulness
Treatments: Chemotherapy, targeted therapy (anti-HER2 receptor monoclonal antibody), immunotherapy (PD-1 inhibitor)
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Melissa W., Stomach Cancer (Gastric Adenocarcinoma), Stage 4B



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

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

Kelsea K. brain cancer

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

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

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

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

Kelsea K. brain cancer

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

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

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

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

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

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

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

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

My name is Kelsea

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

When I first noticed something was wrong

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

I’ve always had headaches

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

My path to diagnosis

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

Preparing for brain surgery

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

The moment everything changed

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

My treatment options and fertility fears

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

The plan moving forward

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

The scanxiety struggle

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

I’m still trying to find a sense of normalcy

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

What hope means to me

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

Thank you for sharing your story, Kelsea!

Inspired by Kelsea's story?

Share your story, too!

More Brain Cancer Stories

Cody L. feature profile

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

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

Kyle and Rachel’s Grade 4 Brain Cancer Story

Kelsey’s Grade 3 Brain Cancer Story

Amanda’s Grade 4 Brain Cancer Story

Melissa’s Rare Brain Tumor Story

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

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

Pio M. colorectal cancer

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

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

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

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

Pio M. colorectal cancer

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

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

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

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

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

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

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

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

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

My name is Pio

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

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

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

When I first noticed something was wrong

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

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

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

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

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

The moment everything changed

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

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

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

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

We left Hawaii to find the right care team

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

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

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

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

What my treatment has looked like

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

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

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

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

I found out that I have an aggressive mutation

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

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

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

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

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

What cancer has shown me

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

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

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

Adjusting to life on the mainland

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

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

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

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

Why I feel like multiple opinions are important

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

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

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

What I want people to know

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

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

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

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

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More Colorectal Cancer Stories

Lindsay

Lindsay D., Colon Cancer, Stage 4



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

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

Janice C. triple-negative breast cancer

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

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

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

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

Janice C. triple-negative breast cancer

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

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

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

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

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

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

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

Hi, my name is Janice

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

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

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

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

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

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

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

Finding the first lump

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

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

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

How they treated my first diagnosis

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

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

I feared the cancer’s return

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

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

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

I recieved a stage 4 diagnosis

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

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

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

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

Navigating the right care team and second opinions

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

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

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

Peer support and advocacy are invaluable

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

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

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

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

The steps I took with stage 4 breast cancer

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

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

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

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

What I want others to know

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

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

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

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

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April D.

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



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Nicole B. triple-negative breast cancer

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



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Melissa sitting in her car

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



Symptom: Lump in left breast

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Melissa is the founder of Cancer Fashionista
Melissa B., Triple-Negative Breast Cancer, Stage 1

Symptom: Pea-sized lump

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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)