Author: Chris Sanchez

Drea Finds Identity and Strength with Stage 4 ROS1+ Lung Cancer

Post author By Chris Sanchez
Post date November 5, 2025
No Comments on Drea Finds Identity and Strength with Stage 4 ROS1+ Lung Cancer

November 5, 2025

Drea Finds Identity and Strength with Stage 4 ROS1+ Lung Cancer

Drea is a video journalist who was only 26 when she was diagnosed with stage 4 ROS1+ lung cancer. It came as quite a shock. She never imagined that a physically active, young non-smoker who had never had any health issues, could ever get cancer.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Drea’s story began in early 2023. She began to experience some strange symptoms, including a swollen ankle from an unexplained deep vein thrombosis or blood clot, odd bruising, extreme weight loss, and persistent shortness of breath. She went to the ER several times, had some urgent care visits, and also saw specialists, but was reassured that what she was experiencing was due to stress or other such causes. She started to doubt herself even as her health began to deteriorate. Eventually, she succeeded in having a CT scan done. It revealed a large mass in her lung. Further tests confirmed that she had stage 4 non-small cell lung cancer that had already spread to multiple locations.

Drea’s experience has convinced her that self-advocacy is key. She explains why we always need to trust our instincts. “If you feel deep inside that something’s wrong, keep pushing,” she advises. Because she was persistent, she eventually had comprehensive biomarker testing, which identified the ROS1 mutation. This discovery opened the door to life-extending targeted therapies.

Living with stage 4 ROS1+ lung cancer has helped Drea redefine survivorship. It’s not just about existing; it’s about living fully. The targeted therapies she’s having allow her to enjoy climbing, biking, beach days, and gardening. She’s open and frank about her ups and downs, and acknowledges the chaos and struggle of having to navigate cancer in her 20s. But she’s decided to treat each day as an opportunity by focusing on what she can control rather than agonizing over the “what-ifs.”

Cancer didn’t strip Drea of her identity. Instead, it’s added new layers. She’s not just a video journalist anymore; she’s also an advocate, connector, and source of hope for others. She shares her story openly to help more people realize that “anyone with lungs can get lung cancer,” and, by doing so, to break the stigma that lung cancer is a smoker’s disease.

Drea urges others to be their own best advocate, seek second opinions, push for biomarker testing, link up with patient groups for support, and, most importantly, give themselves grace. Watch her video for more on:

Her diagnosis at such a young age and how she became her own health advocate against all odds
Drea’s struggle to be heard before her stage 4 ROS1+ lung cancer diagnosis
How targeted therapies gave her her life back
Why Drea names her cancer ‘Carl’, and how humor helps her thrive
The advice she offers young people who don’t feel heard by doctors

Scroll down for the transcript of Drea’s video interview!

Name: Drea C.
Age at Diagnosis:
- 26
Diagnosis:
- Non-Small Cell Lung Cancer
Stage:
- Stage 4
Mutation:
- ROS1
Symptoms:
- Swollen ankle resulting from a deep vein thrombosis or blood clot
- Mysterious bruising
- Extreme weight loss
- Persistent shortness of breath
- Rattling sound coming from the throat while breathing
Treatments:
- Radiation therapy
- Chemotherapy
- Targeted therapies

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

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

Transcript of Drea’s Interview

I'm Drea
When I first felt something was wrong
The moment everything changed
I took my health into my own hands
Learning my biomarker
My treatment plan
How I feel about clinical trials
How I’m navigating my diagnosis and being young
“Hope” is a complicated word for me
What I want others to know

I’m Drea

My name is Drea. I was diagnosed with stage 4 non-small cell lung cancer at 26.

When I first felt something was wrong

I first started feeling off at the beginning of 2023. It began with the DVT, which is a blood clot that resulted in a swollen ankle, and at the time, it didn’t make sense to me because there were no known injuries; I hadn’t fallen, I didn’t trip or anything. I had gone to urgent care, which then sent me to the ER, and then they discovered that it was for sure a blood clot, so they put me on thinners. Following that, I kept having these sorts of mysterious symptoms, among them just bruising up and down my body, and extreme weight loss. It felt like I was in a pit of despair. I felt like there was something off, and I don’t know how to describe that feeling. And I think throughout the process of 4 or 5 months, the symptom that started scaring me the most was the shortness of breath. I think by the time they came around, I had this really weird, awful, rattling sound coming from my throat. Google scared me when I googled that one up. The entire five months of these symptoms, I had gone to urgent care a couple of times, I had gone to the ER, I had seen a specialist, and I kept getting sort of brushed off, getting told, “You’re young, you’re probably just needing a little more rest, you’re probably just tired or stressed.” Cancer or any sort of serious disease was never really mentioned. But then I remember in May, going back to that same urgent care that months earlier had prescribed me an inhaler for the shortness of breath, that same urgent care doctor had finally ordered a CT scan.

He gave me a call, and there was a sort of newfound sense of urgency in his voice. He told me I needed to go to the E.R. immediately. There was a mass that was found in the scan, and it did not look good. So I just drove myself over across the street and got admitted to the E.R. That was my first hospital visit that resulted in, I think it was like a 7 or 8 day stay.

They ran a swath of tests. My blood counts came back, not looking great, but nothing to signal cancer. But it was the imaging that scared doctors the most. They had found this huge lemon-sized mass on my right upper lobe, and sort of nodules scattered across it. They ended up doing a PET scan, and that’s when they found that there was also cancer up and down my spine and pelvis, and not even my noggin was spared, unfortunately. So they knew right away that this was serious and that it was likely cancer. And so I think it was maybe on day 4 or 5 of that hospital stay that they got me in for a bronchoscopy, and then I got the news.

The moment everything changed

Getting told that I had lung cancer at 26, as a never-smoker, never picked up a cigarette, or none of that, was shocking. I did not understand how that could even be possible. I never knew that non-smokers got lung cancer. My dad died of lung cancer in his 40s. He was a very heavy smoker, so I doubt he had any sort of mutations. But because of his lung cancer death, I had made the choice early on that I would never pick up a cigarette. I wouldn’t vape because I saw what it did to others. But then to find out that that didn’t save me from lung cancer was a shock.

Ten out of ten, I would not recommend getting your cancer diagnosis in the E.R. It is awful. So take that with you wherever you go. Try to establish care with the primary care physician who knows you and your history, because getting my diagnosis in the E.R. was not pleasant, to say the least. I think I was there anywhere between 5 and 7 days. It was complicated because after I got that diagnosis, I got discharged. I got sent home with no oxygen for some weird reason. Here’s a metastatic lung cancer patient who has cancer across both lungs, up and down the spine, in her noggin, and she still got sent home with no oxygen. And I just didn’t have anyone to check up on me in the way that I would imagine others would have if they didn’t get their diagnosis in the E.R.. It wasn’t until my at-home nurse noticed that my breathing was getting progressively worse, and she told me to head back to the E.R., that they found that my situation was getting even worse. And so the second time I got admitted, I had to get an emergency blood transfusion and start traditional chemo right away, the very next day, and that was the day that my oncologist told me, This doesn’t work.

We might have to put you in hospice. Because at this point, we had not gotten the biomarker testing results back. And so that was when things finally hit me that this was serious, that I don’t have my youth, I don’t have my young age to rely on, and that something needs to happen. And so I remember lying in bed with my mom by my side at this point, just panicking internally. And that was when I decided to just start calling around to see if there was a comprehensive cancer center that would take me right away, because I did not want to be put in hospice.

I took my health into my own hands

Hearing the word hospice just rattled me to my core. I knew that I had to do something to get myself from getting buried six feet under, and so I started crawling around trying to see what the next best option was. What is an option that is more familiar with these rare types of lung cancers? At the time, I didn’t know that I had ROS1 because we were still waiting on biomarker testing. But the oncologist at the time said that it was very likely, given the fact that I never smoked and I’m so young. I started calling around to this one major comprehensive cancer center in Florida. It was right after that conversation with the oncologist, and I think the call rep could hear the shakiness in my voice because I was trying to talk through tears, just trying to see if there was any sort of openings in the immediate couple of weeks. After all, things were serious, and as soon as I was discharged, I needed to seek care elsewhere to see what other options I had. Luckily, the lady found me in an appointment, and I was able to get in on time. I think it was two weeks later, and that’s how I ended up at my second hospital.

Learning my biomarker

I was actually very lucky that my oncologist at the time knew that there was a specific subtype of lung cancers that tend to impact younger nonsmokers. And he happened to be working that day and saw my case, and he ordered comprehensive biomarker testing right away. I think I got the results after just a couple of weeks. I consider myself very lucky because if it weren’t for biomarker testing, I don’t think I’d be here today.

It allowed me to take targeted therapies, which have been shown to work well with my specific type of cancer. Targeted therapies in general have truly revolutionized what it means to be metastatic and living with lung cancer. And it’s just unfortunate that there are people across this country, across the globe, who are not afforded that option because they’re doctors, or the hospital care system just may not be aware that comprehensive biomarker testing is a thing.

I was kind of all over the place, still trying to process the news. But when my oncologist at the time mentioned that comprehensive biomarker testing could open the window to newer forms of treatments, I was like, all right, let’s do it. And then when I finally got the news and I saw that I had ROS1, which tends to impact, I think it’s like 2 to 3% of all non-small cell lung cancer cases, I was like, great, so here’s to celebrating having a mutation, I guess, let’s do it. It was an interesting, interesting time. A couple of weeks later, my brother was doing some research on my behalf, and he found this incredible nonprofit advocacy group that does a lot to build community and share resources for people with ROS1. They’re called the Ross Wonders, and they have just been a godsend to me. They showed me how to be a better advocate for myself, they’ve connected me with those long-term cancer survivors, and they’ve shown me that you can still live a long and fulfilling life, although you have metastatic lung cancer.

My treatment plan

As soon as we found out that I had ROS1, it became very apparent that we had a better option than that platinum-based chemo that I had already gotten one round of. At the time, I had also gotten radiation. But there has been such incredible research out there about these targeted therapies that the best course of action at that time was to just stop chemo and go on a TKI pill, and so I was put on my first drug.

I got about three years of pretty great response, pretty great quality of life on what I like to call my beloved drug, and it was very good to me; it kept my cancer under control, and I was able to wrangle my control. And I was able to wrangle my life back from cancer in a way that I never envisioned, because I knew nothing about targeted therapies and what sort of quality of life that might have meant. It was great for me for about three years. Unfortunately, earlier this year, I had to switch to another drug, but thankfully, things have been going pretty well on this second TKI as well.

It’s gotten a pretty good control on some of the new lesions that have popped up, and I’m still able to live a relatively normal life. I have a couple of annoying symptoms, but they’re still manageable.

Everyone’s different. Everyone’s going to react differently to each drug. We may have the same cancer with the same lesions and other comorbidities, but we may still react differently to whatever drug we’re taking. I consider myself pretty blessed because I seem to be a fairly good responder to TKIs. I don’t deal with any sort of debilitating symptoms. I know that that’s not the case for a lot of other ROS1ers; unfortunately, I wish it were. But so far, everything that’s been thrown at me has been manageable. I’ve been able to get back to my old life. I climb a lot, I bike, I’m able to take my dog on long walks, I’m able to be out in the sun and garden, I’m a very big beach bum, true Floridian. And I have TKIs to thank for that.

How I feel about clinical trials

I will say a lot of people tend to fear the idea of clinical trials because they like to think, “I don’t want to be a lab rat, I don’t know what sort of outcomes I’m going to see if I join a clinical trial studying a very new drug.”

Editor’s Note: In cancer trials, no one is given only a sugar pill when an effective standard treatment exists. Instead, participants receive either the current standard-of-care treatment or the standard-of-care plus a new therapy being studied, and everyone is closely monitored for safety and benefit. Many of the oncologists we interview describe cancer clinical trials as "getting tomorrow's medicine today."

There are a lot of incredible treatments out there that are revolutionizing what it means to live with these sorts of subtypes of lung cancer, whether it’s ALK, EGFR, or ROS1, like what I have. These therapies are exciting; they’ve shown a lot of great promise. A lot of times, these drugs are being tested for years in a clinical trial setting, and there is early data that you can glean from and decide if that’s a good option for you at the time. If I’m ever at a point where I do run out of TKIs, I will gladly volunteer for science and to help the next lung cancer patient get access to even better drugs in the future.

How I’m navigating my diagnosis and being young

Navigating cancer in your 20s and 30s is incredibly messy; it is chaotic. It is a roller coaster you go through, so many loops, it’s complicated.

I’m not going to deny that, it’s not an easy feat. I’m metastatic, which has caused me to grow up in a lot of different ways. For people who have been diagnosed at earlier stages, it is life-changing. Just because treatment wraps up and your hair grows back and you’re in remission or you’re cured, does not mean that your life goes back to normal or that you’re even the same person you were the day that you were diagnosed. So it is complicated, and I try to remind every cancer patient that I meet to just give themselves grace. It is a work in progress. I am three years out, three years into survivorship, and I am still learning what it means to live with metastatic cancer, and to live each day as if I’m living, not as if I’m dying.

Honestly, I try to just make the most out of whatever time I have left. If it is three months, if it is three years, if it is six years. Let’s pray for six years, I will take six years happily. I like to treat every day like a new day.

And if I’m having a crappy day or just the type of day where you just don’t want to get out of bed and you’re just stuck doom scrolling on your phone, I try to remind myself that tomorrow is a new day.

I used to just get stuck on all the what-ifs. Like, what if I spoke up sooner? What if I pushed for answers sooner? Would my life have been different? Would my cancer have been when it was stage 2 or 3 instead of stage 4? But at the end of the day, what does that do for you? What are you thinking about, the crappy cards that you were dealt day after day? What does that do for you? And so I try to just remind myself to focus on the things that I can control. And that is what my life moving forward is going to look like. Whether that’s for three months, three years, or however long, I know that I just want to make the most of each and every day.

“Hope” is a complicated word for me

I am cautiously optimistic that I will be able to get a good chunk of time out of whatever TKI lines are currently available. And I hope that I will be able to respond well to those therapies until the next best thing comes out.

And there are a lot of really new and exciting TKI drugs currently being studied in clinical trial settings. I try to talk to my cancer from time to time and just be like, “Oh, Carl, can you give me three years of peace, until that next best thing comes out?” I know that next year there’s going to be another TKI out in the market, or at least that’s what my oncologist has said, and what we hope is that it’s going to get approved by the FDA. I try to count my blessings every day and try to beg Carl from time to time to just behave for a little longer, and just go from there.

I like to view my cancer as an insidious roommate that just does not pay rent, that has been uninvited. What is the most awful name you could give that imaginary roommate? And the first name that came to mind is Carl, so his name is Carl.

Carl used to be lemon-sized, around five centimeters. I think he’s down to two centimeters, and he’s been stable.

He’s been behaving this way this whole time. It’s just that I get random lesions outside of the primary tumor that pop up, but for the most part, he’s been good.

What I want others to know

My last piece of advice would just be not to take a lot of stock in survival statistics or prognosis. My first oncologist told me I likely had just three months to live; lo and behold, I’m still here. Three years later, and I’m still going strong, I’m still kicking.

And I hear it all the time in the lung cancer community, fellow patients who have been given months to live, a year to live, and they’re still doing well. And while that may not be true for everyone, there is reason to remain cautiously optimistic because newer therapies are coming out every couple of years, and science is advancing in a lot of incredible ways.

I want people to know that anyone with lungs can get lung cancer. You do not have to be smoking eight packs of cigarettes a day to get lung cancer. I was 26 when I was diagnosed, and I have not once picked up a cigarette or a vape or any of that stuff, but I still got diagnosed with stage four non-small cell lung cancer. It is something that is happening to more and more young people, year after year, and we don’t know why. It’s terrifying.

If you’re feeling out of breath, if you’re seeing a lot of troubling symptoms that don’t make sense, whether it’s back pain and then this weird rattling sound coming from your throat, and you’re getting told by your doctors you’re fine, it’s probably pneumonia or asthma, here’s an inhaler, don’t listen to them. Seek better care and keep pushing for answers, because lung cancer cases amongst nonsmokers are going up. And at the end of the day, you’re going to be your own best advocate.

Thank you for sharing your story, Drea!

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Micheal Finds Hope with an Inoperable Brain Cancer by Joining a Clinical Trial

Post author By Chris Sanchez
Post date November 3, 2025
No Comments on Micheal Finds Hope with an Inoperable Brain Cancer by Joining a Clinical Trial

November 3, 2025

Micheal Finds Hope with an Inoperable Brain Cancer by Joining a Clinical Trial

Micheal opens up about his experience with inoperable brain cancer. His story started in early 2025, when he began feeling random waves of nausea and dizziness, often after waking up or lying flat. At first, he thought he’d eaten something bad. Even his local doctor suspected simple balance issues caused by dislodged ear crystals. But when the right side of his face gradually weakened and his eyes began to twitch, he knew something more serious was going on.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

After several MRIs, doctors confirmed that Micheal had a diffuse midline glioma (DMG) in his brain stem, a rare, aggressive type of brain cancer that, in his case, can’t be removed surgically. Hearing the diagnosis left him numb, yet he leaned on his family, faith, and humor to cope. His mom strongly encouraged a second opinion, which led them to Mayo Clinic, where he underwent a biopsy. While the procedure left him with facial weakness, partial numbness in his left arm, and some vision changes, Micheal remains mobile and independent.

Treatment has involved Micheal joining a clinical trial that’s focused on short rounds of radiation. Instead of doing six straight weeks of radiation, he receives two weeks at a time and then goes under observation. This approach allows his body to recover between treatments, which helps him both physically and mentally. He has had to deal with side effects like nausea, dizziness, and hair loss, but he’s grateful for the chance to keep moving forward.

Thanks to his experience, Micheal’s outlook on life has grown deeper and more meaningful. He takes time to appreciate small moments, like walking and noticing the world around him. He keeps his mental health in check by staying hopeful, joking with his mom, and setting goals for the future, like finally earning a pilot’s license when his vision improves. The advice he offers others is simple but powerful: never take life for granted, help others when you can, and always be the best version of yourself.

Micheal reminds everyone that having brain cancer doesn’t erase the possibility of joy, love, and purpose. Hope, for him, is waking up each day with the belief that there’s still life to live and a future to work toward.

Watch Micheal’s video and scroll through the transcript of his interview below to:

Learn the subtle symptoms that can signal something far more serious than dislodged ear crystals
Understand how Micheal turned a life-changing diagnosis into a story of hope
Find out more about the clinical trial that gave him a chance to keep moving forward
See the small daily moments that have brought Micheal joy in the face of brain cancer
Read his simple yet powerful advice for living with purpose

Name: Micheal J.
Diagnosis:
- Brain Cancer (Diffuse Midline Glioma)
Age at Diagnosis:
- 25
Grade:
- Grade 4
Symptoms:
- Vertigo
- Eye nystagmus
- Weakness on the right side of the face
- Dizziness
Treatment:
- Radiation therapy, as part of a clinical trial

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

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

Transcript of Micheal’s Interview

My name is Micheal
When I first noticed something was wrong
The moment everything changed: getting my diagnosis
How I felt when I heard “You have a mass”
My mom pushed for a second opinion
What my biopsy did to me
I decided to go on a clinical trial
The side effects I’m experiencing while on the clinical trial
It’s hard to accept that surgery isn’t an option for me
My biggest challenge, staying connected, and finding normalcy
Cancer has changed my outlook on life
Living with my eye issues and next steps
Hope keeps me motivated
My biggest piece of advice to others

My name is Micheal

I was diagnosed back in April of 2025, and I live in Iowa.

What I like to do is I like to play a lot of video games. I like to take my dog out for walks. Lately, I have been doing a lot of pushups. I was really big into fitness before this, and I still am.

My partner and I, I consider her my wife because we have been together for almost four years now, we do not have any kids. Before the diagnosis, we were in the process of figuring things out, getting a house, getting married, and everything. We are still thinking about getting married, but right now we are just kind of waiting on medical bills and stuff like that.

When I first noticed something was wrong

I first started noticing symptoms back in February, very early February. My family and I went out to Minneapolis, Minnesota, to go to the Mall of America, and we also saw a hockey game while we were up there. While we were there, I started waking up in the mornings and randomly feeling very, very nauseous for no reason. I just kind of marked it up as maybe I ate something bad.

We ended up getting back from Minnesota, and I want to say this was about the middle of February. After we got back from Minnesota, I ended up calling in [sick to work] for an entire week because I just could not lie flat anymore. I could not lie fully on my back without getting a really bad, dizzy spell. The best way I can describe a dizzy spell is if you were to stand still and spin in a circle, and just stop, and you just kind of let your equilibrium go crazy. It was not fun.

It was around that time that I felt I had to do something because I could not keep calling in. So I went to my local doctor down here, and they said it could be my ear crystals, the little crystals in your ear that help out with your balance and everything. They said sometimes those can get dislodged and cause these vertigo‑like symptoms.

They gave me some medication, and it helped with the dizziness, but with me being a diesel mechanic and going underneath the trucks all the time, lying flat like that on a creeper was not fun for me. I would get up off the creeper and go straight to the trash can, essentially. It was around then, when I could not stand it anymore, that I felt there had to be something more going on.

We were getting closer to March, around the end of February, when I started getting facial weakness on my right side. I could not really smile on this side, and I could not blink very well on this right side. So I contacted my doctor and said, “Something is going on.” He said, “What I am going to do is send you up to the ENT, ear, nose, and throat doctor, just to make sure that it is your ear crystals or if it is something more.”

I went through a couple of tests at the ENT doctor out in South Dakota, and that is where they ended up finding my eye nystagmus. Eye nystagmus is when, if I look completely to my right or completely to my left, my eye will bounce back and forth. They were the ones who said I should get an MRI done. I did not get an actual MRI until closer to April, which is really sad to say, but that is just how the process went.

The moment everything changed: getting my diagnosis

I went into the hospital to get an MRI, and that is where they found a mass. There are not a lot of neurosurgeons or neurologists down here in Sioux City. So they sent me from our Saint Luke’s hospital to our Mercy hospital, where they have a neurologist. That is where I did another MRI, and they basically wanted to do surgery right away to see if they could get it out of there.

I ended up staying the night there, and the next morning, they said they were going to send me up to Omaha because they could not really tell where this thing was, and they have better MRI machines up there. The doctor did not want to just go in and start trying to cut out something he could not see. So they took me up to Omaha and did another MRI there.

That is where they found that it was inside my brain stem. It is called a DMG, which is a diffuse midline glioma. Essentially, it is completely smooth and has no borders, which means it is fused to my brain stem. That is where they gave me the prognosis, and they wanted to do traditional radiation and send me back down here.

How I felt when I heard “You have a mass”

When they first walked in and told me, I honestly just felt very numb at first. I did not know what to think. What I did next scared a lot of doctors, but I basically took off the medical stuff they had hooked up to read my heart and everything, and I looked at my mom and said I was going to go for a walk.

I had my best friend, Kevin, with me, and I had my wife, Becca, with me. We walked down to the church that is in the USMC hospital. That is where it really hit me, and I broke down there. It took a lot to come to acceptance. It is not a great prognosis, but we all have a lot of faith.

My mom pushed for a second opinion

This is actually a really good part of my story, because this is where my mom comes in. I love my mom to death. She is the one who said, “No, I cannot accept this.”

After I went on my little journey, a couple of doctors had to come and find me and tell me that I could not just be walking off like that. We ended up coming back home to Sioux City, and my mom reached out to a couple of her friends who had cancer. They basically said, “Get to Rochester. Go to Mayo. Get a second opinion.”

My mom called me up the next day, a day after we got home, and said, “Let’s just go out to breakfast. I want to talk to you a little bit.” We have a little breakfast place out here called Johnny Marr’s, really good for breakfast. That is where she said, “Why don’t we just go up to Mayo? They are the best in the US right now. They are number one. What is the harm it could do?”

So we drove four and a half hours that day, went into the emergency room, and we were there for quite a while. I think we got up to Rochester around eight at night, and we did not get out of there until almost two or three in the morning.

They had a neurosurgeon in the emergency room. Her name was Sarah, a very, very nice lady. She is the one who said straight up, “I am going to help you, and I am going to send a personal message to Dr. Parney,” who was one of the top neurosurgeons there. She said, “I am going to talk to Dr. Parney, and we are going to get something figured out.”

Within days, like two days, we were already getting a call from Mayo saying they wanted to schedule a biopsy and talk to me about it and see how I felt. We ended up setting up the appointment and going to Mayo. Dr. Parney is a very, very nice man. He basically said he could do a biopsy on this.

He said there was about an 85% chance of him coming out completely normal, as if nothing happened, a 15% chance of some damage, which is where the facial weakness and arm issues come into play here, and a less than 1% chance of death. He did the biopsy, and I signed some papers. They ended up grabbing two samples. They grabbed a sample from me, and they also grabbed a sample to further research on DMGs and DIPGs, and that is basically how that went down.

What my biopsy did to me

The after‑effects, when I first woke up, were rough. I could not move the right side of my jaw very well. There is still some Bell’s palsy going on on this side of my face. It took a little bit to regain some of the movements in my face, but I can finally chomp down like normal again.

My right eye does not close very well. My eyelid goes about halfway down and then stops. I cannot really move my right eyebrow very well. My left arm, from about the pectoral muscle all the way down to my fingertips, is still kind of completely numb. I am starting to regain some feeling in my fingertips, which is really good, but the rest of my arm is still fairly numb.

I am still able to walk. I am still able to talk, swallow, all the normal things you are normally able to do. It is just my face and arm, mainly.

I decided to go on a clinical trial

With DIPGs and DMGs, the treatments are still fairly limited because there are a lot of ongoing clinical trials. Dr. Breen is my radiologist, and he said that photon radiation is the best type of radiation therapy for these types of tumors.

When we were talking about it, he basically gave me an option. He said I could do the full six weeks of radiation in one go and essentially see what happens. Or, he had been working on a clinical trial. This clinical trial includes doing my first two weeks of radiation, and then they will go on observation from there. Essentially, if this thing tries to grow or go anywhere else, then you hit it with another two weeks of radiation. The idea is to prolong the treatments.

When you do your full six weeks, you have to take, I believe, six months to almost a year off treatments just to let your body recover and heal. When he brought up those options, my mom was the one who straight-up asked him, “If this were your child, which one would you choose to go for?” He said he would go for the clinical trial, just because a full six weeks of radiation on a tumor in such a very, very, very sensitive area of the body could either grow or shrink it at a rapid pace and pull that brain stem down with it.

So we opted for the two weeks of radiation, then going in once a month for an MRI to see how the tumor is doing. If it tries to progress or get any worse, then we hit it with another two weeks of radiation. They have been talking about a pill called ONC201, but my doctor still has to talk to other doctors about it and see if I am qualified for it.

The side effects I’m experiencing while on the clinical trial

After the first two weeks, I was very, very nauseous. I was nauseous during the radiation as well. That was my main issue: the nausea.

After the two weeks were done, I got home, and they had told me this thing might swell a little bit. My doctor talked about it like training for a boxing fight: if you get hit in the eye too many times, your eye is going to swell up, and then eventually that swelling is going to go down and get better.

My first week home, I felt a lot of pressure in my head. The dizzy spells were pretty bad that first week. But as time went on, things started improving. I started getting fewer dizzy spells. My eye nystagmus has gotten better, and I have been able to move around a lot better.

Thankfully, I have never had any issues during this journey with my mobility. I have been able to keep my mobility as normal as possible. But the first couple of weeks after radiation are rough. That is when my hair started falling out in the back of my head a little bit, where they were doing the radiation. Other than that, it was pretty okay.

It’s hard to accept that surgery isn’t an option for me

It is hard. It is very hard. I am not going to lie. On Facebook, I have joined some support groups where people were able to get their tumors removed. They did not have the same thing I did, but they were able to get theirs removed.

To me, I feel like if the tumor is removed, you have a little bit more of a fighting shot because there is nothing there pushing up against the optic nerves. There is nothing there. I know that they can recur, but it is still kind of hard for me. I am slowly accepting it.

I just keep praying and keep telling myself that I have been in my body for 26 years, and this thing has been in my body for a couple of months, and I am going to make sure this tumor dies.

My biggest challenge, staying connected, and finding normalcy

Honestly, right now, it is my vision. My right eye has always been the stronger eye because I was born with a lazy eye in my left one. Without my glasses, I am practically blind. That is really my biggest issue right now.

Because of how long I have had my eye taped down, I have pretty bad double vision right now. Those are my two big issues. Other than that, everything else has been going really, really well.

Honestly, going back to work has helped a lot. I am on light duty right now. My doctors have advised me to only do about 32 hours a week because out here in Iowa, that is federal law; you have to hit 32 hours at least to be considered full-time. The good thing about being back at work is I get to keep my insurance, and we have really, really good insurance. Medical bills have been very easy for now.

Coming home and being able to be with my wife and our roommate, just being able to relax and talk and talk about different things other than what is going on with me, helps. It is hard to think about the prognosis they gave me because I am so young. But the good part about being in support groups is that you see a lot of long‑term survivors. That has helped quite a bit.

I will go on there sometimes just to see how people are doing. We all talk about how we are feeling, and that is where I get my wording out the best—through those support groups.

Cancer has changed my outlook on life

Honestly, not much in terms of who I am has changed, but I do have a better outlook on life. It is sad to say, but sometimes it takes a life‑changing event to make you realize the beauty of life in general. You get so stuck in the “go home, go to work, go home, go to work” routine and the constant list of what you have to do when you get off work.

Lately, I have just been kind of stopping and smelling the roses a little bit. Just being able to walk outside, even at work. We have a very big parking lot for our trucks out there. Every morning when I get to work, I walk that lot all the way down and walk all the way back to the shop, just admiring things, admiring the life that I still have.

It has been very, very life-changing. My goal was always that I wanted to be a pilot. Obviously, with my vision issues, that has been put on hold for a little bit. I had a lot of options for what I wanted to do. I was very big on taking things apart and putting them back together, and that is why I became a diesel mechanic. At the time, I was thinking, “I am going to do this for now, and I am going to work on getting my pilot’s license.”

Then this happened, and now I am at the point where once my vision gets back, I am going to go for my pilot’s license. A couple of things have been stepped up a little bit more in terms of urgency.

Living with my eye issues and next steps

It is hard for me to blink in general. In all honesty, they really have not said anything specific about fixing it yet.

We are all at that stage of “maybe just give it some time, and this will come back,” especially because I told them about the feeling coming back in my hand.

My next MRI is October 3rd, and that is where I am going to ask if maybe we could put something in my eyelid to weigh it down so I can start keeping moisture in that eye. With it being taped down, a lot more power is going into my other eye, which is causing the double vision.

Hope keeps me motivated

At first, before my diagnosis, hope was just a word. You hope that this happens, you hope that that happens. But now hope takes on a different meaning for me.

Hope is what brings me some joy in my life. It is what brings me the confidence to keep going. It means a lot to me right now. It is the reason why I wake up in the mornings. It is the reason why I keep fighting: the hope that I am going to live a long life, the hope that I am going to be able to spend time with my family.

It is just a joke, but my mom and I have been cracking jokes lately. I told her, “No offense to you, Mom, but I hope I bury you first before you bury me.” She said, “In all honesty, no offense, I hope the same thing.” That is what hope means to me: being able to think about the future like there is no tumor in my head.

Being able to think, “Yeah, I am going to have kids. Yeah, I am going to be able to see my grandkids grow up.” That is what hope means to me lately.

My biggest piece of advice to others

Do not take life for granted. I definitely took my life for granted. I was one of those people who always said, “Oh, I’ll do it later. I’ll do it later. I’ll do it later.”

Do not let a life‑changing event, whether it be cancer, traumatic brain injuries, or whatever it is, be the reason you stop putting life first. Do not put your life on hold just because you think you have time.

Nobody ever expects to get something like this. I definitely did not expect to get this. I was healthy, there was nothing wrong with me, my blood work was fine, and it all started just by getting dizzy, all because I could not lie flat on my back.

If you are able to help somebody, help them out. If you see that person on the side of the road who does not know how to change a tire, what is the harm in helping them? Always try to be the best you that you can be.

I lived my life by asking, “Why be a jerk? Why live your life being a jerk?” Be the best version that you can be now, and then you can take that with you. You can always take that with you. Nobody can ever take your personality away from you.

Thank you for sharing your story, Micheal!

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Biomarker Testing Gave Lysa New Hope with Stage 4 ROS1+ Lung Cancer

Post author By Chris Sanchez
Post date November 3, 2025
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November 3, 2025

Biomarker Testing Gave Lysa New Hope with Stage 4 ROS1+ Lung Cancer

I was 40 years old, very busy, still raising my kids, and working and going to school at the same time when I was diagnosed with stage 4 ROS1+ lung cancer. Lysa’s experience highlights her resilience and serves as a prime example of what self-advocacy can lead–in her case, lead to a new therapy.

At 40, she experienced severe mid-back pain that she and doctors initially thought was just a pulled muscle. Later, however, her symptoms worsened, leading to a shocking diagnosis: lung cancer that had already spread to her spine.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Though her lung cancer was initially responsive to chemotherapy, Lysa was determined to learn more about it. This pushed her to reach out to fellow lung cancer patients on online patient communities. She also learned about biomarker testing, which empowered her to seek a second opinion, ultimately undergoing surgery solely to obtain tissue for comprehensive biomarker analysis. The result? She discovered she was positive for the ROS1 mutation. This qualified her for targeted therapy that significantly improved her quality of life.

When her non-small cell lung cancer progressed, Lysa didn’t settle. She advocated for herself again, enrolling in a clinical trial that has kept her stable. Thanks to targeted therapy and clinical trials, she’s celebrated many milestones, including her daughter’s graduations and the birth of her first grandson, as well as other important moments with family and friends.

Lysa’s stage 4 ROS1+ lung cancer experience shows how critical biomarker testing and clinical trials are in expanding treatment options. Her story is a testament to the power of self-advocacy, community support, and the importance of never giving up on seeking better care.

Watch Lysa’s video and read her story below to:

Find out how her back pain revealed her life-changing diagnosis
Learn why biomarker testing became Lysa’s game-changer
Discover how a targeted therapy and a clinical trial gave her more time with her loved ones
See how Lysa’s self-advocacy with ROS1ders changed her stage 4 ROS1+ lung cancer care
Meet the woman who thrives beyond her diagnosis

Name: Lysa B.
Age at Diagnosis:
- 40
Diagnosis:
- Non-Small Cell Lung Cancer (NSCLC)
Staging:
- Stage 4
Mutation:
- ROS1
Symptom:
- Severe but intermittent back pain
Treatments:
- Chemotherapy
- Radiation therapy
- Targeted therapy, including through a clinical trial
- Surgeries: lung resection, metastatic spine tumor surgery

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

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

Table of Contents

About Me
When I First Noticed That Something Was Wrong
The Moment Everything Changed
How I Learned About Biomarker Testing
Learning I was ROS1+ and Taking the Only Treatment Option Available Then
I Joined a Clinical Trial When My Stage 4 ROS1+ Cancer Progressed
Targeted Therapy Has Changed My Quality of Life for the Better
Anyone With Lungs Can Get Lung Cancer
My Advice to Others

You think you’re doing what you can to take care of yourself. I quickly learned that none of that really matters. If you have lungs, you can get lung cancer.
Lysa B. – Lung cancer patient

About Me

Hi, I’m Lysa.

I was diagnosed with stage 4 non-small cell lung cancer with an ROS1 mutation.

When I First Noticed That Something Was Wrong

I had just graduated from college. I was 40 years old, very busy, still raising my kids, and working and going to school at the same time.

I started having back pain. It wasn’t a typical lower back pain that you’d get by straining yourself doing something, though that’s what I kept telling myself. It was a little bit higher, right in the middle of my back.

My husband and I took our daughter to California for a vacation, and we visited SeaWorld in Disneyland. There were two nights when I would lie down, the pain was so bad that I felt like I couldn’t breathe right, and I couldn’t sleep. My husband said, “We have to go to the E.R., we have to figure out what’s going on.”

We went to the E.R. around midnight. There, they were concerned about my kidneys because of the back pain. But my kidneys were fine, so they thought I’d just pulled a muscle. They gave me a few muscle relaxers and pain medicines to get me through the weekend, and they told me, “Follow up with your doctor when you get home.” And the next day we went to Disneyland for 12 hours.

I agreed that I must have just pulled a muscle. Everything seemed to be fine. I was 40. I was healthy. I was a runner. I was in great shape at the time, or so I thought. So you shouldn’t ever believe that cancer is not on your radar.

The pain was intermittent, so I was able to ignore it and push through. I was taking a lot more Tylenol at that point, icing the area, and getting massages. But it wasn’t getting better.

I went on a vacation to see my family in Kentucky, and the pain got so bad coming home from the airport. I was traveling alone, and I remember calling my mom, crying, and telling her, “I can’t even walk through the airport right now.” She went, “Get a wheelchair, just get home. We’ll take care of it.”

The next morning, we went to the E.R. again, this time to an E.R. near where we lived. They did multiple tests, a CT, a full MRI of my entire spine to try and see where the pain was coming from, as well as a chest X-ray.

I was in great shape at the time, or so I thought. So you shouldn’t ever believe that cancer is not on your radar.
Lysa B. – Lung cancer patient

The Moment Everything Changed

Several hours later, the E.R. doctor came in and told us, “You have to sit down. It appears that you have stage 4 lung cancer that’s already spread to your spine.”

I had just lost a friend to lung cancer about five months before that, and she had only been 43. So I immediately thought, “Oh my God. Who’s going to raise my kids?” My son was 19, but he still needed me. My daughter was 11.

You think you’re doing what you can to take care of yourself. I quickly learned that none of that really matters. If you have lungs, you can get lung cancer. Unfortunately, sometimes you’re just dealt a crappy hand.

How I Learned About Biomarker Testing

Right after I was diagnosed, I found an online forum where I started talking to other patients. Mostly, I just connected with them and tried to seek support. And through that forum, I learned so much about lung cancer.

It’s not one disease. You don’t just treat it one way. And there are biomarkers, which are proteins that drive your cancer to grow. They are specific to certain lung cancers, and they typically tend to be in younger women, mostly under 50.

I did talk to my oncologist about it, but I was having a great response to chemo at the time. So she just said, “When the time comes, we’ll look into that.” I was okay with that for a while, and it wasn’t until I had progression about 15 months later that we decided to try and do another biopsy to get enough tissue to do biomarker testing.

At that point, my tumor had a lot of scar tissue around it. It was in a hard-to-access spot. We had done two needle biopsies through my lung, which were inconclusive and didn’t have enough tumor DNA actually to tell if there were any biomarkers or not. So my oncologist wanted to try another chemotherapy, and at that point I said, “There’s got to be something better than this.” And I switched oncologists.

Learning I was ROS1+ and Taking the Only Treatment Option Available Then

Within a couple of weeks, I was seeing a new doctor, Dr. Vogelsang. He pushed for me, and that validation helped me realize that this man was going to help me do whatever I needed to do for however long I wanted to do it.

At the time, it took several weeks to get my results back. It was stressful, and I was trying to be hopeful. Plus, I was recovering from surgery.

My phone rang at 10 p.m., and I don’t normally answer my phone if I don’t know who’s calling me, but I answered, and it was Dr. Vogelsang. He said, “We’ve got great news, your results are in. And you’re ROS1-positive.”

He was super excited about it, and I was too. I knew that meant I was eligible for targeted therapy. I wouldn’t have to do chemo anymore. So it was great. It was literally a game-changer for me.

By the time I found out what my biomarker was, it was 2013. I had already been diagnosed with and living with lung cancer for 18 months. I started getting nervous around that time; it was like I was feeling I was on borrowed time. I wondered when it was going to quit working.

I was eligible for targeted therapy. I wouldn’t have to do chemo anymore… It was literally a game-changer for me.
Lysa B. – Lung cancer patient

I Joined a Clinical Trial When My Stage 4 ROS1+ Cancer Progressed

We added chemo to my targeted therapy in the hope that it would get me at least to the end of that year, seven or eight months away, before I might start on that drug. Well, I remained stable with that combination for another five years, so I was able to stay on my first targeted therapy for ten years.

By the time I progressed again after those five years, I had a new biopsy. I did have new metastases in places I’d never had before, and it seemed to be fairly aggressive. It went from nothing on a scan to not significant to more than doubling in size two months afterward. I knew we had to do something quickly.

We did a biopsy on my 50th birthday. That was fun. And based on those results, I decided to go on a clinical trial. So in June 2023, just over two years ago, I started a phase one clinical trial that I had to travel to Tennessee for.

I’m still in that trial. I actually went again just last week. I just got my scan results back, and I’m still stable. So I’m extremely happy about that.

I feel pretty good on this drug, which is nice. And I don’t have to do chemo anymore. Because of this drug, I’ve lived long enough to see my first grandson. The drug is in pill form. I’m able to have my scans at home.

Targeted Therapy Has Changed My Quality of Life for the Better

When I was diagnosed, my youngest was 11, and she was in fifth grade. Honestly, my first goal was to see her graduate from high school. I wanted to give her that much, at least, to get her there. Of course, I was the loud lady at her graduation. I was so excited and crying and bawling.

I’ve since gotten to see her graduate from college. I have just had our first grandson this year. And my son was 19; he was older, but he still needed some help, and I have been able to see him flourish and find his way in this world.

My husband and I love to travel and eat. I have a great friend group here. We do trivia every week. My parents live two miles from me; I just hung out with my mom all day the other day.

I know I’m lucky that I can do those things. I’ve always been such an on-the-go person, the type who has to take care of everything right now. I can’t go to bed till the dishes are done, that sort of thing. I need structure, and I might have been a little extreme.

Now, I don’t care if there are dishes in my sink. I try not to let external things get me down. And I focus on trying to find the joy in every day.

My biggest happiness is when I’m with my family and my dogs. I love my dogs.

I try not to let external things get me down. And I focus on trying to find the joy in every day.
Lysa B. – Lung cancer patient

Anyone With Lungs Can Get Lung Cancer

One of the first questions many people ask you when you tell them you have lung cancer is, “Did you smoke?” It used to make me angry, because it felt accusatory. But I really think when people ask that question, if they’re nonsmokers, they’re trying to be like, “Oh, well, that’s why you got it.”

I honestly don’t think they come from a bad place, but it makes you feel bad, like you have to defend yourself. My grandmother died of lung cancer, and she was a smoker her whole life. Can we blame her for her death?

Everyone deserves access to care. We have lung cancer. It doesn’t matter how we got it. And there are many risk factors out there, so many that we don’t even know how to correlate them, though we do know that they contribute to lung cancer.

I have friends who are vegetarians, yoga instructors, lifelong runners, and so on. People who thought they did all the right things. And yet we still got lung cancer. I still ended up getting stage 4 ROS1+ lung cancer.

Cancer doesn’t discriminate.

You do not have to be alone.
Lysa B. – Lung cancer patient

My Advice to Others

There are patient groups for most of these biomarkers. There are maybe a dozen online. Many of them have websites. You can look them up and join them. You do not have to be alone.

They are a huge source of not only support but also knowledge. Like the ROS1ders in particular. It is scientifically vetted by researchers, as well as all of our information about the drug options. What works for us, what doesn’t, how to deal with side effects. There are patient stories on there. There is a large community out there that many people might not know exists. I am proud to be part of ROS1ders.

These patient groups aren’t just for other patients. We’re seen and invited to medical conferences now. Doctors and researchers collaborate with these groups to do better for the people in our community. So please reach out to them if you have a biomarker. It’s so important.

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

Thank you for sharing your story, Lysa!

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Choosing Life on Her Terms: Pippa’s Stage 4 Vulvar Cancer Story

Post author By Chris Sanchez
Post date November 2, 2025
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November 2, 2025

Choosing Life on Her Terms: Pippa’s Stage 4 Vulvar Cancer Story

Pippa shares her stage 4 vulvar cancer experience. Diagnosed in January 2023, her early symptoms were subtle, including persistent soreness and discomfort that eluded quick fixes. From the start, she leaned into her intuition, seeking answers and refusing to dismiss what her body was telling her. Eventually, she was diagnosed with stage 1 vulvar cancer — a diagnosis that shifted to stage 3 and, ultimately, stage 4 once it was found to have spread.

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

Soon, Pippa had to deal with surgeries, including a total pelvic exenteration. Repeated hospitalizations and side effects of her vulvar cancer treatment took their toll. She describes physical discomfort, mental exhaustion, and adjustments to routines, but always underscores how grateful she is to have received unwavering support from her husband, family and friends, and her employer as well.

Pippa was at times overwhelmed by the treatments for her rare cancer, especially when options dwindled after recurrence. Despite the recommendation for more intensive chemotherapy, Pippa chose quality of life over harsh intervention, a defining moment in her experience. New routines emerged, built on patience and realistic expectations. She learned to walk again, embraced ostomy care, and shifted to slower, more deliberate daily rhythms.

Beyond her treatments, Pippa also works to raise awareness for vulvar cancer. She helps other women navigate early symptoms and speaks openly about the mental and emotional challenges of living with such a diagnosis. She emphasizes that “there is life with cancer” and that advocacy, community, and small joys, be they dog walks, time spent with loved ones, or moments in nature, offer resilience through uncertainty.

Pippa’s stage 4 vulvar cancer experience helps rewrite what it means to live fully with cancer and reminds us of the power in listening to one’s body and advocating for care. Watch her video and read through her transcript below. You’ll learn about:

Trusting your instincts and advocating for yourself, because persistent discomfort deserves immediate attention
How the support of loved ones, community, and compassionate medical professionals dramatically impacts mental and emotional well-being
How treatment exhaustion and physical limitations demand patience and realistic expectations; routine tasks become part of recovery and adaptation
The meaning and dignity to be found in living with cancer
How Pippa transformed her experience into advocacy, raising awareness for vulvar and vaginal cancers and empowering others to seek care and speak up

Name: Pippa S.
Age at Diagnosis:
- 47
Diagnosis:
- Vulvar Cancer (Metastatic)
Staging:
- Initially Stage 1; progressed to Stage 3; currently Stage 4 and terminal
Symptoms:
- Persistent itching
- Red patch of skin inside left labia that turned into a wart-like lump
- Bloody discharge
Treatments:
- Surgeries: wide local excision, lymphadenectomy, total pelvic exenteration, colostomy surgery, urostomy surgery
- Radiation therapy
- Chemotherapy

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

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

Transcript of Pippa’s Interview

Hi, I'm Pippa
Surgeries, tubes, and recovery challenges
Complications after surgery: infections and skin issues
The first warning signs
Fast-track diagnosis: a rare cancer identified
Staging and unexpected test results
Radiotherapy and chemotherapy: intensive treatment
Recurrence: facing stage 4 and new surgeries
The largest surgery: total pelvic exenteration
Living with side effects and adjusting to daily life
The importance of support from family, friends, and my employer
The impact on my mental and emotional health
Shifting identity and living meaningfully
Monitoring and looking ahead
My advice for patients and raising awareness

Hi, I’m Pippa

I was diagnosed with vulvar cancer in January 2023.

I’m a big foodie. I love cooking and baking, and I work in the food industry. I enjoy walks, hikes, and seeking out new restaurants. I have a passion for travel, exploring new places rather than relaxing by the pool, and I’m a dedicated Lego collector.

Surgeries, tubes, and recovery challenges

After my last surgery, I had an NG tube inserted through my nose into my stomach to feed me, because my abdomen had gone through so much trauma that I couldn’t tolerate any food. I was violently sick with everything I ate, so I was tube-fed for about ten to fourteen days. It was extremely uncomfortable. One day, I became so sick that I vomited the tube up and refused to have it put back in.

Complications after surgery: infections and skin issues

After one of my surgeries, I developed an infection. During the night, I must have scratched myself and introduced bacteria, leading to cellulitis. My neck and face became dry and peeled repeatedly, leaving raw skin. This happened about five times, and I ended up hospitalized. At one point, strangers thought I had a terrible sunburn, but a kind security guard recognized it was cellulitis and offered advice that made me feel genuinely cared for. That really made me feel very loved.

The first warning signs

The first red flag was a sore, itchy patch inside my left labia that became increasingly uncomfortable. Over-the-counter creams and medications didn’t help. It eventually formed a wart-like lump, and even lidocaine couldn’t relieve the pain. I experienced walking, standing, and sitting discomfort, bleeding, a bloody discharge, and pain during sex. Eventually, I no longer wanted to have sex at all because it was so painful. That’s when I scheduled a doctor’s appointment.

Nothing was getting rid of it, and I just kept persevering. I was just so uncomfortable.

Fast-track diagnosis: a rare cancer identified

Thankfully, my doctor had seen vulvar cancer, this rare cancer, before, and immediately suspected either an infected cyst or cancer. Antibiotics did nothing, so she referred me for a biopsy. Even before the diagnosis, I knew in my heart it was cancer.

The biopsy confirmed early-stage vulvar cancer, which wasn’t a surprise at this point. The biopsy itself was extremely painful and left me in agony for days.

Staging and unexpected test results

It was initially diagnosed as stage 1; my scans didn’t show cancer elsewhere. Surgery removed the tumor and some lymph nodes, but two of those nodes were cancerous, so I was told it was now stage 3.

I was shocked but not surprised. My gut instincts had been correct from the start.

Radiotherapy and chemotherapy: intensive treatment

I received 25 rounds of radiotherapy and five rounds of chemotherapy over five weeks; Monday through Friday for radiotherapy, and a full day at the hospital for chemo every Wednesday.

Recovering from these treatments was exhausting. I did most of it alone because I just didn’t have the energy for conversation. Netflix kept me company during those long hospital days.

Recurrence: facing stage 4 and new surgeries

By January 2024, symptoms reappeared on my right labia and near my back passage. I had further biopsies, surgery in March, and again in July, each time taking more suspect tissue. Soon after, scans revealed the cancer had reappeared internally in my right groin and in my lung.

Because previous radiotherapy ruled out more radiation and more surgery was considered too risky, the only remaining option was high-dose chemotherapy. I declined, wanting to avoid spending my remaining time very ill and instead focus on quality of life.

The largest surgery: total pelvic exenteration

In October 2024, I had a total pelvic exenteration, a rare and massive surgery. Most of my large bowel, my back passage, bladder, vagina, and uterus were removed.

I now have two stomas, a colostomy and a urostomy bag, and while I initially worried about them, they are simply part of my daily routine.

Recovery was extremely hard. I had to relearn to walk and couldn’t leave the hospital for eight weeks. Daily tasks left me exhausted, but I had support from nurses, my husband, family, and friends.

Living with side effects and adjusting to daily life

Fatigue and loss of appetite linger. I have chronic pain, osteoarthritis in both hips, and lymphedema in my leg. My pace of life has slowed tremendously. My dog has been vital for my daily motivation.

I get chronic fatigue now. So I can’t do as much as I could.

I focus on what matters and let go of perfectionism in housework. Getting through each day, ensuring my family is cared for, is my priority.

The importance of support from family, friends, and my employer

My husband has been unwavering. He has been an absolute rock. I couldn’t have done this without him. Seeing his pain has been the most difficult part.

My parents, despite their own health issues, visit and support me regularly. My friends, colleagues, and even my employer have gone above and beyond, providing gifts, visits, and patience as I adjust to ill-health retirement.

The impact on my mental and emotional health

I sought counseling, especially after being told the cancer was terminal. My biggest fear was leaving my husband and how he would cope.

I have learned to make peace with uncertainty and to focus on living each day as fully as possible. I’m at total peace with it now. It’s going to happen when it’s going to happen.

And until that point, I’m just going to keep living my life.

Shifting identity and living meaningfully

I’ve learned to savor the small things — dog walks, nature, time with my husband.

My identity has shifted; I’m told I’m strong and brave, though I don’t always feel it.

Raising awareness for vulvar cancer gives me purpose, and I have built a strong online community. Supporting others gives me pride and motivation to keep sharing and reaching women who might be afraid to talk about gynecological health.

I’m incredibly proud of the awareness that I’m raising. There is life with cancer.

Monitoring and looking ahead

I no longer have regular appointments, but I can contact my care team or palliative nurse as needed.

I am considering joining early-stage clinical trials, not for my own benefit but to help those who come after me, since direct treatments for vulvar cancer are lacking.

For now, I focus on making great memories, financial stability for my husband, and empowering women to check themselves and seek care quickly.

My advice for patients and raising awareness

If you notice symptoms, get checked. Don’t ignore discomfort or delay care. Even if a symptom is embarrassing, moments of awkwardness are worth it for your future.

Just go and get it checked out. What’s a few minutes of embarrassment over the rest of your life?

Be your own advocate and empower those around you. Vulvar and vaginal cancers need more attention and openness.

Thank you for sharing your story, Pippa!

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Antibody-drug conjugate Arthroplasty Breast Cancer CDK4/6 inhibitor Chemotherapy Hormone Therapies Mastectomy Metastatic Patient Stories Radiation Therapy Surgery Targeted Therapy Treatments

Holding On to Hope: Tammy’s Stage 4 Metastatic Breast Cancer Story

Post author By Chris Sanchez
Post date November 1, 2025
No Comments on Holding On to Hope: Tammy’s Stage 4 Metastatic Breast Cancer Story

November 1, 2025

I was Given 18 Months–5 Years Ago! Tammy’s Stage 4 Metastatic Breast Cancer Story

This is Tammy’s story about life with metastatic breast cancer. She opens up about how her life shifted dramatically because of her experience. One day, she was walking five miles, and the next, she was in a wheelchair because cancer had eaten through her femur.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Tammy first faced breast cancer in 2014, after a misdiagnosed lump turned out to be far more serious than expected. After surgery, chemotherapy, radiation, and hormone therapy, she carried on with her life. But in 2020, pain in her hip and leg led to a devastating diagnosis of metastatic breast cancer. She shares how hard it was to process the prognosis, especially when her first oncologist gave her only 18 months to live. Rather than accept that, she became her own best advocate. She sought six different opinions, learned about treatment lines, and found a medical team that listened to and supported her.

Throughout her experience, Tammy emphasizes the importance of self-advocacy. She explains how staying informed about treatment options, asking questions, and seeking second (or sixth) opinions have been life-giving choices. Each progression of her metastatic breast cancer led to new therapies, such as hormone therapies, and she highlights the urgent need for research and clinical trials. In fact, she’s a passionate supporter of clinical trials because the drug currently keeping her disease in check didn’t even exist three years ago. This, she says, is why funding research matters; not only to extend lives, but also to improve the quality of life for people living with stage 4 disease.

Tammy also offers her insights on the emotional side of living with metastatic breast cancer. She talks about the weight of thinking that every holiday, birthday, or family gathering might be her last. She crochets baby blankets for her future grandchildren, not knowing if she’ll be present when they’re born. Yet she embraces the present moment and encourages others to grant themselves grace. Her strong faith helps her stay grounded, and she clings to hope in all its forms. She looks forward to seeing her children get married, to keep sharing happy moments with her family, and to continue finding treatments that work.

Watch Tammy’s video above and read her interview transcript below.

From walking five miles to being in a wheelchair overnight, Tammy’s stage 4 breast cancer story is one of resilience and hope
Six second opinions and numerous treatments. Why she refuses to give up
Learn why Tammy crochets baby blankets for grandkids she dreams of meeting
Understand why the hardest part for Tammy is the fear that every special occasion could be her last
See how hope, faith, and self-advocacy fuel her resolve

Name: Tammy U.
Diagnosis:
- ER-Positive HER2-Low Metastatic Breast Cancer
Age at Diagnosis:
- Stage 2B: 42
- Stage 4: 49
Staging:
- 2014: Stage 2B
- 2020: Stage 4
Symptoms:
- Severe back pain
- Right hip pain
- Left leg pain
Treatments:
- Surgeries: mastectomy, hip arthroplasty
- Chemotherapy
- Radiation therapy
- Hormone therapy
- Targeted therapies: CDK4/6 inhibitor, antibody-drug conjugate

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

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

Transcript of Tammy’s Interview

My name is Tammy
My first experience with breast cancer was caught early, and by accident
Years later, I started experiencing pain
Learning that my cancer returned was devastating, because it’s incurable
My oncologist told me I was out of treatment options
What my current treatment looks like, and the plan moving forward
What people don’t understand about stage 4 breast cancer
It’s hard not to think that certain moments and events could be my last
My hope for the future is that manageable treatments improve the quality of life for stage 4 patients

My name is Tammy

I was diagnosed with early-stage breast cancer in 2014 and metastatic breast cancer in 2020.

My first experience with breast cancer was caught early, and by accident

I went in for my very first mammogram at the age of 40. They found a calcification or several calcifications that they were going to watch at that time. So they had me doing a mammogram every six months thereafter.

Two years later, after having four mammograms, they told me I was clear and I could go back to yearly mammograms. That was in June. I had found a lump in my left breast shortly before that June mammogram and brought it up. They said the mammogram was clear. “There wasn’t anything there, nothing to worry about.” And I should just get on with life. And so I did.

As luck had it or not, I tore my biceps tendon in January and was going to have my shoulder done, and I had to have a pre-op physical. So I went to my primary care doc and I said, “Hey, I’ve got this lump.” It was protruding through the skin. She took a look at it and looked at the mammogram, and she said, “You know, it’s just a cyst. Just have that drained if it’s bothering you.” So in February of 2014, I went in for what I thought was just a cyst drainage. I was joking with the surgeon and how he was going to make the scar so no one would ever be able to tell I had had surgery.

I was put under. When I woke up, I saw my husband and the surgeon in the hallway. The anesthesiologist was holding my hand, and I knew immediately before they said a word that it was not a benign cyst. So that spiraled into having a mastectomy, chemotherapy, radiation, and hormone therapy, which I was going to be on for ten years. And I went on with life.

Years later, I started experiencing pain

In 2019, I was having right hip pain. They did an X-ray and sent me to physical therapy, and said that it wasn’t anything.

In 2020, we relocated to another part of Wisconsin, and I had to establish care with a new doctor, which I did. I was having a lot of knee pain when I would run. It was during COVID, and there wasn’t much to do but run. I chalked the pain up to that.

I saw my primary care provider for it. She did an X-ray. She said I just needed some physical therapy. I was doing that for about six weeks, wasn’t making any progress, and eventually I just stopped going. And God bless my physical therapist, he called me one afternoon and said, “Hey, why aren’t you coming anymore?” And I said, “No offense, you’re a wonderful person, but you’re not helping me one bit, and I’m not going to waste my time anymore.” He said, “Let’s have you see one of our sports medicine doctors. Maybe they’ll have some insight I don’t have.”

So I met with one of those sports doctors, and he said, “Oh, this is simple. You have a torn meniscus, and we’re going to get in there. We’ll schedule it for surgery, and we’ll clean it up. You’ll be back running in six weeks. But first, we need to do an MRI.”

So they did the MRI. I didn’t even make it home before he called me. He said, “I don’t know how to tell you this because I deal with torn ACLs. That’s the worst news I’ve given people. But there’s something really wrong with your leg and the bone in your leg and your femur. Part of the knee. I don’t know what this is, but it’s way above what I see.”

I was referred to oncology then. A biopsy was done, and it was found that it was breast cancer that had eaten through my femur.

So I went from walking five miles one day to being confined to a wheelchair the next, for fear that it would fracture if I stepped down the wrong way. A PET scan later revealed that the right hip pain that I was complaining about was due to lesions on my right hip, and the L3, which was a benign issue, had completely fractured from cancer.

Learning that my cancer returned was devastating, because it’s incurable

Statistics for metastatic disease online through Doctor Google are very depressing. When I met with my oncologist and he told me that, at best, I could hope to live 18 more months, that was very hard to hear.

I immediately had my kids come home. My daughter who was a freshman in college, my oldest daughter, and my son who was living here. I sat them down with my husband, and we told them in person.

Honestly, death — that’s where I thought I was headed. And then there was a lot of anger that there were things missed along the way, and we were trying to process through how that happened.

I had no family history of cancer and no risk factors for it. I had the genetic testing done. And at that point, in 2014, I only qualified for the testing because of my age. But I didn’t carry any of the genes that you can see in breast cancer. I had genetic testing done again, not too long ago, because there’s so much more that they test for now than they did in 2014. And, by their standards, I still have zero risk of cancer.

My oncologist told me I was out of treatment options

My son was a sophomore in high school. I asked if I would see him graduate, and was told that that was highly unlikely.

I took the second opinion thing to the extreme. I got six. I wanted to make sure that I was completely comfortable with the path I was going to be on moving forward. So that’s kind of a standing joke. “Tammy doesn’t get a second opinion. She gets six second opinions.”

After talking to people and just doing my own advocacy for myself, I decided I needed to part ways with that oncologist. I didn’t feel that we were on the same page. And I also knew that there were other options for me. So I underwent a full right hip replacement. Stayed on the targeted therapy drug I was on for another full year under the guidance or the recommendation of my new oncologist. When that stopped working, we moved on to an oral chemotherapy drug, and I remained on that for a full year.

And then I had another progression, and was started on another targeted [00:16:30:00] therapy, an antibody drug conjugate, which was administered through an IV port. I had that treatment every three weeks. That started in April, and by the end of July, my scan showed no evidence of active disease.

I continued the same treatment until December, and then I stopped, because I was having my left hip replaced due to the cancer and the radiation, and all the damage that that caused. I had a series of failed surgeries for something that was supposed to be very simple, to the point where one of my doctors thought that I was going to have to amputate the leg at some point because of it, but I still have my leg. Then I resumed taking the same antibody-drug conjugate in July when my numbers started to creep up again. I’ve been on that ever since, and they’ve dropped significantly.

So the hope is that we’ll get back to no evidence of active disease in the next short while.

What my current treatment looks like, and the plan moving forward

Every 21 days, I have treatments on Tuesdays and Fridays. I go in and I get a white blood cell booster so that my white blood cell count will allow me to have treatment on Tuesdays.

I am fortunate that my side effects are manageable. I deal with the usual ones: hair loss, fatigue, and nausea. But I find them acceptable. This is what I have to do to stay alive. It’s just kind of a repetitive cycle. And you just hope it works for a long time to come.

Every time I’ve had a progression with the oncologist I’ve been seeing for the last several years, the first thing we do is look into clinical trials and my eligibility for those. There are some questions as to whether my estrogen receptor-positive cancer has mutated to a triple negative, and some biopsies have indicated it’s a possibility. That does kind of throw a little bit of a wrench in things. But we always look for clinical trials first before deciding on a treatment. So obviously, I’m a big proponent of those. And I hold out hope that I’ll be able to participate at some point. The drug that I’m on now wasn’t available to me three years ago. It’s a game-changer.

What people don’t understand about stage 4 breast cancer

Well, when I had hair and I didn’t look sick, or even now when I put a wig on and I go out, I think people fail to realize that I’m still in treatment, that I still struggle.

I was always go, go, go. I was the mom who was doing everything, who was involved in everything. Now, especially because I’m still not walking, I depend on people for everything in my day. And that’s very difficult. But stage 4, in general, when people see you, you get asked all the time, “Oh, when are you done with treatment?” People do not understand that you’re never going to be done.

They also don’t understand that you’re not going to die from stage 2 breast cancer. You are more likely to die from stage 4. And any research that we can do for stage 4 is going to benefit those early stages. But the statistics of living with stage 4 metastatic disease are daunting, honestly. I just passed my five-year mark from my official diagnosis, although obviously I was dealing with it longer than that, and I’ve lost so many people I’ve come to know in the metastatic community, and I just don’t think people realize that.

Somebody said, “What do you mean? You have breast cancer in your bones?” There’s just a lack of awareness, I think.

It’s hard not to think that certain moments and events could be my last

I tell people now, when I meet them after they’re first diagnosed, that they just have to grant themselves grace.

When I was initially diagnosed, I kept thinking, especially in that first year, “This is the last time I’m going to have a vacation with my family,” or, “This is the last time we’re going to celebrate a holiday or a birthday.” That was really, really hard for me, because every event seemed like it was my last one.

I specifically remember one time that my daughters were home and I had baked a cake. I had gone upstairs to my room to change. I came down, and they had frosted the cake for me, and it was the worst job of frosting a cake I had ever seen. I burst into tears and said, “I haven’t even taught you how to frost a cake. What else haven’t I taught you that I’m not going to be here to teach you in the future?”

So that mindset was probably the hardest part. You just have to learn to accept the moment that you’re in. Try to remain as positive as you can. I have a very strong faith that guides me in everything I do.

For me, the physical limitations are probably the greatest challenge. Because your quality of life always has to come first, and being pushed around in a wheelchair by your son or whoever is just difficult.

I can’t do things myself that I would want to do. I still hold out hope that someday, I will again.

My hope for the future is that manageable treatments improve the quality of life for stage 4 patients

Hope is my favorite word.

You just can’t give up hoping. I had listened to that doctor I saw early on, if I had believed him when he said, “I’m sorry, you’ve got 18 months to live,” I wouldn’t still be here. I don’t let people take away my hope.

I understand that hope looks different for everybody. One of my daughters just got engaged. She’ll be getting married next year. I never thought that I’d be here to see that day. Now I hope I’m here to see the next one get married, which will be the year after that.

So, you know, it’s just holding out hope for whatever that looks like for you in that moment. And just not letting go of that.

Thank you for sharing your story, Tammy!

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

Post author By Chris Sanchez
Post date October 31, 2025
No Comments on Learning to Talk Again: Beth’s Stage 4 Tongue Cancer Story

October 31, 2025

Mental Health and Learning to Talk Again: Beth’s Stage 4 Tongue Cancer Story (Squamous Cell Carcinoma)

Beth opens up about her experience with stage 4 tongue cancer. She first noticed that something was off when fatigue, earaches, and a small ulcer on her tongue refused to clear up. After rounds of antibiotics and a scary migraine, an ENT finally spotted the problem and immediately called for a biopsy. Hearing the words “squamous cell carcinoma” was surreal. She remembers thinking, “What do I do now?” while her family processed the shock around her.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Beth explored treatment options and started chemo and radiation in April 2024. Radiation to her head and neck was brutal, stripping her of the ability to taste, eat, and speak comfortably. Even after months of treatment, her tongue cancer came back stronger. The recurrence led her to MD Anderson, where she faced the reality of losing 85% of her tongue. Surgery lasted 12 hours and required removing lymph nodes and rebuilding her mouth with muscle from her thigh. She then went through proton therapy, documenting her experience on social media to connect with others.

Life after squamous cell carcinoma treatment has been as complicated as being in treatment. Beth had to relearn how to eat, communicate, and see herself in a world centered around food and conversation. She speaks honestly about the mental health weight of survivorship and her struggles with fear, grief, and the pressure to feel “normal.” But she also embraces her new self with courage and humor, finding purpose in supporting other young women facing head and neck cancers.

Beth wants people to understand that survivorship is messy. It comes with gratitude and anger, and some feel a responsibility to live for those who didn’t make it. She encourages awareness of tongue cancer and head and neck cancers, especially in younger women whose rates are rising. Her story is a reminder that life after cancer is different, but it can still be meaningful, connected, and full of small joys, like nibbling a few bites of pasta on vacation or sharing her story online so someone else feels less alone.

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

How she learned to eat and talk again after losing most of her tongue
The surprising early signs of tongue cancer you might overlook
Why survivorship can be as emotionally heavy as treatment
The social and mental health challenges of life after tongue cancer
How Beth turned her diagnosis into advocacy for others

Name: Beth R.
Diagnosis:
- Tongue Cancer (Squamous Cell Carcinoma of the Tongue) with Perineural Invasion
Age at Diagnosis:
- 34
Staging:
- Stage 4
Symptoms:
- Intense migraine
- Earaches
- Persistent tongue ulcer
Treatments:
- Surgery: total glossectomy
- Chemotherapy
- Radiation therapy: proton therapy

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

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

Transcript of Beth’s Interview

Hi. My name is Beth
When I first noticed something was “off”
The moment everything changed
Exploring my treatment options
The treatment path I took
My symptoms came back
Transferring my care to MD Anderson
What my surgery looked like
I had to do more treatment
Losing most of my tongue impacts my everyday life
Learning how to eat again
How cancer changed me
What I want people to know

Hi. My name is Beth

I had squamous cell carcinoma of the tongue. I was originally diagnosed on March 11, 2024. I had a recurrence on October 5th, 2024. I’ve been cancer-free for almost five months now.

When I first noticed something was “off”

Cancer snuck up on me, honestly. It’s interesting looking back because hindsight is 20/20.

I had a lot of very mild symptoms, things that I wouldn’t have suspected were signs of cancer. I had habits that weren’t out of the ordinary. I was very tired because I was living a fast-paced life. I started to get sick and had a hard time getting better. My immune system just didn’t seem to function the way it should. I had a small ulcer on my tongue, almost like a cold sore or a swollen taste bud. My dentist noticed it and said, “Keep an eye on it.” I mentioned it to my primary care physician at some point, but I just bounced back to the dentist on that.

Leading up to my diagnosis, I got a really bad earache, to the point that I couldn’t sit still; it felt like swimmer’s ear or something bad. I messaged my doctor through the portal, and he put me on antibiotics. They didn’t help. I went back to him, and he gave me another round of antibiotics. Then I got a migraine, and it was worse than anything I had ever experienced before.

I went back to my PCP and told him about the migraine and earache. “We need to figure this out,” I said. He thought I might have problems with my TMJ or temporomandibular joint, which connects the jawbone to the skull, because I was grinding my teeth, and that was causing tension.

He told me, “Let’s try the ear, nose, and throat specialist.” So I went to the ENT. I went by myself because I didn’t think anything was wrong. The ENT pulled my tongue out and stopped right in her tracks. I thought that was an interesting reaction. She said, “You need a biopsy, right now.” She pulled out what looked like a sub hole punch, put some lidocaine on the iffy part of my tongue, and punched a hole in the side of my tongue. I got blood all over my face. I told her, “You have to tell me what’s going on.” She was nervous and said, “I’m going to tell you that in my professional opinion, it looks like cancer. It could come back as an autoimmune disorder that I’m unfamiliar with, or some other thing like that. Let’s not jump to the worst-case scenario, but you need to be informed. I’m giving you my best advice.”

So I left there, and that’s probably the angriest I’ve been in the last two years. I returned the following Monday with my mom, my sister, and my fiancée. And they told us that I had squamous cell carcinoma.

The moment everything changed

The only thing I really remember about finding out that it was cancer is that she never said the word ‘cancer’ itself. She said ‘squamous cell carcinoma,’ which is, of course, cancer, but I wasn’t used to hearing that. They handed me a sheet of paper that explained what squamous cell carcinoma is. It was like a worksheet you would get in school that tells you you’re sick.

I thought my fiancée, my mom, and my sister had a more intense initial reaction than I did. It was like in the movies, where the sound cuts out, but there was a lot of murmuring and movement around the room. The only thing I remember is thinking, “What do I do now?” I haven’t thought about it in a long time.

At the time, I felt like I was going to get all the answers and the knowledge about cancer and find the answers to questions like, what do I do now, how do I fix it, what are my options, where do I go from here, and so on. And that’s not what happens. There’s so much waiting involved and there are so many options, doctors’ appointments, tests, and things like that before anything else happens.

Exploring my treatment options

So in that initial appointment, I did ask, “What happens now? I have tongue cancer, what do we do?”

At the time, the ENT said that I would have to have surgery to remove the tumor, after which I would hopefully have clear margins. And then, hopefully, that would be the end of it and I wouldn’t need any more treatment. But if the surgery wouldn’t have clear margins, I would then need to do radiation and chemotherapy. He added that the surgery would leave me with a permanent speech impediment, and it would likely be challenging for me to feed myself for the rest of my life. I said, “What are my other options?” He told me, “Some people opt to do chemo and then radiation instead of surgery.

Looking back at MyChart, the ENT said I declined surgery. I don’t feel that’s how the conversation went, though. I feel like I was presented information and my options were, end up with a speech impediment and be unable to eat and then still have to do chemo and radiation, or just do chemo and radiation. And for me, at the time, it seemed unnecessary to have part of my tongue cut out if I didn’t need that done.

The treatment path I took

I went down the road of radiation. I was diagnosed on March 11 and started chemo and radiation, blast radiation to my head and neck, on April 29.

Almost eight weeks after that, and after they punched a hole in the cancer, the cancer seemed to get mad. I had planned to work up until I started treatment, but that didn’t happen. I lasted about three and a half weeks before the pain got too intense within two months. By the time I started treatment, I was quite ready to get the cancer out of my body. I was in a lot of pain. I could barely eat or talk.

I did seven chemotherapy sessions. I also did radiation to my head and neck. I developed burns on the inside of my mouth, on my tongue, all over my cheeks, down my throat, into my chest cavity. By the third week, I had lost the ability to taste, and by the fourth week, I could no longer eat using my mouth.

Radiation to the head and neck is a form of cruel punishment. I know that it’s effective in treating cancer, but I wish that more head and neck patients understood how difficult it is to have the head and neck blasted with radiation.

I finished my final round of radiation on June 17, 2024. And we danced and everything. I had done it. I had defeated cancer. I had lost 45 pounds in just two months, couldn’t talk or eat, but the cancer was gone, so it was time to celebrate.

My symptoms came back

About two months later, I was so eager to get my life back that I went back to work part-time. I was forcing the narrative that I was better, even though I didn’t feel better.

As it turns out, my cancer was chemo-resistant.

Around my birthday, I started getting headaches. We went to Miami, and I’m really glad I went on that trip. Because it was the last time I had my tongue.

We had this huge, grand dinner and I had this new lease on life. But when I got back home from Miami, I started having headaches. I went to see my oncology team, and they said, “Well, there are plenty of side effects from radiation.” It was hard to respond to that, but I had a CT coming up.

I had an awesome weekend during which I hosted my best friend’s bachelorette party. I was feeling a little off, but I powered through. The last day of that weekend, I had a headache like I used to before I got diagnosed. I went downstairs into one of the guest rooms, put on my headache hat and shut the door, and screamed at the top of my lungs, blood in my ears. “This is not normal,” I said.

When we went home, I told my partner about it, and he took me to the emergency room. I told them my medical history and they said, “We’ll do a CT scan.” The ER doctor said that they couldn’t see anything, and I responded, “OK, but I’m still in pain even after the medication you gave me, so what now?” They admitted me overnight, and I ended up in the hospital for five days.

I didn’t think the cancer had already come back. I hadn’t even let that cross my mind. Of course it had, but I felt like one of the doctors would have seen it if so.

My oncologist sat me down and sat next to me. He said, “The cancer is still there or back.” I was like, “How is that possible? How could that happen? You didn’t tell me it cold happen.”

Cancer number two was worse. It was much larger, much further back, and much meaner than cancer number one. My medical oncologist isn’t at fault. They treated it, and while I was in treatment, the cancer leapt out of the treatment zone and started over.

The medical oncologist told me that they thought I should go to MD Anderson in Houston. I wish I had started there. I can’t go back, of course. I lost 85% of my tongue.

Transferring my care to MD Anderson

It took place over two or three weeks. So they did a PET scan, a CT scan, and I met with all the doctors and they said, “This could happen. We’ll all talk. Come back in three weeks and we’ll tell you, as a board, what we decide is the best way foward.”

I went back on October 28. I then met the surgeon, the radiation oncologist, and a speech pathologist. Every single one of them said that I had to lose my tongue; I had options and didn’t have to do this, but it was what they recommended.

It was such a weird day. It was right before Halloween. I went home from finding out that I was going to lose my tongue with a giant bag full of Halloween candy. I will say I will never forget that day, because on top of everything else, my fiancee proposed to me that night.

We were going through the candy and there was this little plastic spider ring. He said, “Will you marry me?” and put the little ring on my finger, and that’s how we got engaged. It was just the two of us.

I thought my life was over, that I would never get to tell my mom that I loved her, and that I would never go out to dinner with my husband, enjoy vacation, or be normal. And then my fiancee looked me in the eyes and said, “I want every version of you.”

I went home and scheduled surgery. And then the cancer tried to kill me for the next four weeks. Squamous cell is a rapidly growing cancer, an aggressive one. The specific location of mine and the type I had was wrapped around my cranial nerve, which is attached to the ears and brain. That’s why I was having the headaches; the cancer essentially got into my nerve and then tried to suffocate me. My family will never forget the sounds of my screams.

What my surgery looked like

By the time I went in for surgery, I was so ready for the cancer to be removed from my body. I didn’t care what they did.

I was very upset about losing my tongue when I found out I needed to, but by the time I lost my tongue, I had resigned myself to the fact that I needed to get rid of it. It was disease-filled and it was killing me. I think that because of that, I lost sight of all the things that I will lose. The emotional impact of that has taught me now that I’m in survivorship. I think my body and mind were protecting themselves by putting on those blinders.

My surgery was 12 hours long. They removed the top of my neck, 75 of my lymph nodes, and 85% of my tongue. And then they took out a 12-inch-long muscle from my thight and reconstructed a flap. But because I have no natural tongue from this point, the flap is sewn to the gums and anchored to the floor of my mouth. I have about 10% of my tongue left. The only movement it does is what the basic tongue pumps. But as far as my oral cavity, nothing in it moves.

I had to do more treatment

I went back for my follow-up, and they said that I had to do proton therapy.

I had been under the impression that I would only need to do radiation once, to my head and neck. But MD Anderson said that proton therapy would be necessary due to the pain I was in and because the cancer had metastasized to the lymph nodes.

I think I was actually more upset about proton therapy than about surgery, because I had already done radiation and I knew full well how brutal it was. Keep in mind that I had been in treatment since April 2024, and this was now January 2025. I was supposed to do three months of chemo and radiation to be cancer-free, and ten months later, I still wasn’t healthy.

I started doing TikTok before radiation and after surgery. So all of my proton therapy is documented, which is wild. I started filming myself.

I wanted to be done, I wanted it all to be over. I know that’s what we all want. When they said that I had to continue treatment, it just consumed me. It felt so long and so hard.

Losing most of my tongue impacts my everyday life

I had to relearn how to eat, talk, and live my life as a person with a disability, and I fit into a lot of boxes that I didn’t before.

Survivorship in some ways has been as complicated as being a patient. The mental load of being a survivor is really heavy. I felt very alone when I found out that I had head and neck cancer as a woman. Unfortunately, it turns out that the incidence of such cancers in young women specifically has damn near doubled in the last twenty years. It used to be mainly a cancer of men 60 years and older. Women aged 25 to 45 have become the largest demographic next to men over 60. They don’t know why.

That being said, I couldn’t find anyone exactly like me, a young woman with her whole life ahead of her. So I started with social media as a tool to track my own progress.

In general, some of the adjustments have been tough. Seeing what I look like when I talk. Controlling the movements of my face and mouth. All those things.

My number one thought is, hopefully, if one other person, some girl, comes across me on my little corner of the internet and feels like they can relate, I will have done more good than bad.

Learning how to eat again

We don’t always think about it this way, but food is at the center of our daily lives, as are communication, our voices, and the way we talk to people. Holidays, social interactions, birthdays — pretty much everything we do revolves around food, sometimes alcohol, talking, and being a person. And when we lose that, we don’t feel like we have a place in the world any longer. Especially coming from my background, where I literally fed people for a living.

I’ve lost a huge part of my identity. I’ve always been the loudest girl in the room. I’ve always been quick-witted, always liked telling jokes, always loved to cook a big meal and make cocktails and bring people together around those things. And then cancer came in and said, “Huh, just kidding.” And I also feel like it was hard on everyone in my life. No one, even those in my immediate family, knew how to help me.

I wanted so badly to eat again. My speech pathologist asked me, “Are you taking sips?” I was taking little sips, but I wanted to open my mouth again, and I didn’t know how to do that. My speech pathologist team at MD Anderson has been such a boon. I can’t say enough wonderful things about them. My plastic surgeon there, and everyone I’ve dealt with there, have quite literally changed my life. I’m indebted to them for giving me the chance to have the life I have now. They helped me take a no-nonsense approach to speech pathology. I wanted to do the hard things; if it’s hard, just tell me that it is.

I found out that the throat is one of the only muscles in the body that will completely forget how to do its job. So at the start, I was forcing a swallow with no tongue. So I would be sending food to the back of my throat in the hope that when it got there, my throat would know what to do. But as it turns out, it doesn’t, not all the time. Not to mention because they had to cut my neck open, and a lot of nerves and things are located there.

My feeding tube started to hurt, but it was sore, and I couldn’t deal with it anymore. But I was determined. And the first week or so was an adjustment, and I got stronger. I had been hungry before, and I didn’t want to be hungry anymore. All those efforts were strengthening my muscles, unbeknownst to me. And then one day, I think we were are the movie theater, and I couldn’t stand it. I shoved a French fry in my mouth and chewed it up, and took little drinks of water. It took me the rest of the movie to swallow it. But it turns out I can eat solid food.

It’s hard, it’s so hard. I put out a lot online that’s encouraging, but I would be lying if I said that I don’t still struggle.

The biggest thing for me with food is that I had to change my mindset around solid food. I don’t eat to fill myself up, with the expectation that I’m going to polish my plate. I didn’t have the opportunity to eat for almost a year of my life. Anything I get to put in my mouth is a bonus. I drink nutritional drinks four times a day. I’m well-fed. I feel strong and healthy because I know how important nutrition is. Now, in this instance, I might have some instant macaroni and cheese. It’s delicious, salty, and soft, and it’s a safe food for me; I know I can always have some. I can go on vacation with my family and order the kids pasta and have a few bites of noodles, and get to share that moment with them. And that’s enough.

How cancer changed me

I have a lot of fear. I was afraid of almost everything coming out of treatment. I didn’t know how to be social; I didn’t know how to talk to people like the guy at the gas station. I hated opening my mouth and watching people’s eyes and seeing them go, “What did she say?” I hated having to repeat myself.

I refused to go to the grocery for several months, because I could not stand to be reminded of all the things I can’t do. And I keep putting this invisible pressure on myself from everyone else.

But I could just honor my body. I could stop being so mean to the girl who almost died, and start taking care of her.

And all I’ve ever wanted is to have a little bit of what I had before. My life will never be the same. I’m not the person that I was. Because I found out I had cancer. And now I realize that this person I am now is actually really cool and super brave. I started that little initiative online, and then a whole bunch of other people were like, “Hey, me too.”

I want to take what happened to me and use it to help make things better in the world. All I want is to make someone else feel a little bit less alone and a little bit less scared.

What I want people to know

Survivorship is a lot of feeling bad that other people have died and that I’m alive. It’s anger about what happened to me. But I’m glad that I’m here. My heart is going to be broken forever, but I’m happy I have this new outlook on life. Sometimes I’m here and sometimes I’m there; sometimes both at the same time.

I went into the treatment room thinking I would never tell anyone anything ever again. They told me they had no idea what I would sound like. And I can’t imagine being trapped inside my body. That was the biggest fear.

Not everyone gets a second chance. And not everyone gets to open their eyes for the first time. Cancer was the worst thing that ever happened to me, but it feels like getting a second chance. And the bonus round is really sweet.

Thank you for sharing your story, Beth!

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

Post author By Chris Sanchez
Post date October 28, 2025
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October 28, 2025

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

When Nicole was diagnosed with stage 4 triple-negative breast cancer, her world shifted overnight. A jewelry artist, Nicole saw cancer as an unexpected chapter in her human experience. What began as strange “zapping” sensations in her chest quickly revealed a life-threatening reality. After pushing for timely appointments and a rushed mammogram, Nicole learned not only that she had breast cancer but that it had already spread to her liver.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Nicole’s strength lies not only in her resilience but also in her creativity. For over a decade, she has poured her energy into hand-carved jewelry design, using wax carving as a meditative process to find calm through chaos. Even during intense chemotherapy and through treatment fatigue, she continued creating, transforming her pain into purpose. Eventually, after targeted therapy, she began showing results. Nicole underwent a mastectomy with aesthetic flat closure, marking both physical and emotional healing milestones.

Nicole’s experience was far from easy. Her first chemotherapy regimen failed, her tumor grew, and she endured infection and significant pain. But she dug deep and proactively self-advocated. She insisted on faster diagnostic testing and remaining deeply engaged in her care, which proved to be lifesaving. Her story underscores how listening to one’s intuition can be critical in the world of complex oncology.

Now responding well to treatment, Nicole continues chemo alongside complementary therapies like hyperbaric oxygen sessions and lymphatic drainage. She also channels her energy into advocacy and is preparing to attend the San Antonio Breast Cancer Symposium as a patient representative. Through her art and voice, she reminds others that stage 4 breast cancer is not a death sentence, but a test of perspective, perseverance, and the power of hope.

Watch Nicole’s video and read the transcript of her interview below. Her story will show you how:

Self-advocacy can mean the difference between early treatment and missed opportunity
Creativity can become a form of healing and grounding during illness
Treatments for metastatic triple-negative breast cancer are improving every year
Transformation is possible through both physical healing and renewed purpose
Trusting your intuition when something feels wrong is powerful

Name: Nicole B.
Diagnosis:
- Triple-Negative Breast Cancer (Metastatic)
Age at Diagnosis:
- 42
Staging:
- Stage 4
Mutations:
- BRCA1 and PTEN
Symptoms:
- Appearance of lumps in breast and liver
- Electric shock-like sensations in breast
- Fatigue
Treatments:
- Chemotherapy
- Surgeries: installation of chemotherapy port, mastectomy with flat aesthetic closure
- Targeted therapy: antibody-drug conjugate
- Hyperbaric oxygen therapy
- Lymphatic drainage

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

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

Transcript of Nicole’s Interview

My name is Nicole
Discovering my passion for jewelry
When I first noticed that something was wrong
Scheduling the mammogram
The waiting game
The diagnosis: stage 4 triple-negative breast cancer
Beginning treatment and facing complications
I recently had a mastectomy
Continuing treatment and finding hope
How creativity keeps me alive
Stage 4 is not a death sentence
What I want others to know

My name is Nicole

My name is Nicole. I have stage 4 triple-negative breast cancer. I was diagnosed earlier in 2025.

Cancer was the unexpected part of my human experience, as it is for most people. I’m a fine jewelry designer, and I make primarily engagement rings in 14- and 18-karat gold. I started my business in 2012, and it has evolved since then. I work from home and live with my wonderful partner, Eric, and his son. I love art and nature. I’m a bit of a homebody and enjoy watching films.

Discovering my passion for jewelry

I attended SAIC in Chicago and earned my degree in Visual Communications, focusing on graphic design. After a major surgery, I left that field and began making jewelry for myself — something hands-on to balance the project management aspect of my job. Over time, as I took more classes and gained more experience, my work evolved into whimsical, nature-inspired, hand-carved pieces.

A loss in my life pushed me to fully embrace that artistic style, even though I thought people might find it “weird.” Fortunately, my clients loved it.

For years, I focused on mastering technique. I learned the rules so that I could break them. Hand-carved jewelry uses jeweler’s wax, a harder, plasticized wax. I carve the wax to create models that go through a casting process where the wax is burned away and replaced by gold.

Working in wax is forgiving; you can fix mistakes. If you carve directly in gold and make a mistake, you have to scrap the whole thing. This process allows me to create sculptural, textured, and expressive work.

When I first noticed that something was wrong

In February 2025, I went to the Tucson Gem Show with my best friend, Lindsay. Right before the trip, after my period, I noticed a strange pain when my seatbelt touched my chest. It felt like a shock or zap. I thought it might be a cyst because I have dense breast tissue and have had cysts before.

But over the trip, I felt more zapping and tingling sensations. They didn’t feel normal. When I returned home, I saw my gynecologist. The lump had grown, and during the exam, he became visibly concerned. He said there was even a temperature difference between my breasts and ordered an urgent diagnostic mammogram.

Scheduling the mammogram

Getting scheduled was difficult. I had to advocate fiercely for myself because appointments were booked months out. Once I finally got in, the mammogram tech kept assuring me it was probably nothing. But deep down, I knew something was wrong.

During the ultrasound, the radiologist quickly returned and requested a rush biopsy. While they couldn’t confirm cancer yet, it was clear they suspected it.

The waiting game

Waiting for results was the hardest part. I cried often. I couldn’t sleep, and I was physically and mentally exhausted long before treatment began. Friends told me that waiting is one of the hardest parts, and they were right.

I went through a lot of cognitive dissonance. I had a hard time sleeping. I cried a lot because I was scared.

The diagnosis: stage 4 triple-negative breast cancer

I received a call within 24 hours of my biopsy. The doctor used the phrase “malignant neoplasm,” but didn’t say the word “cancer.” I had to push for answers. They wouldn’t yet tell me the type, but scheduled me for oncology appointments weeks away.

By the time I saw the surgical oncologist, the tumor had grown dramatically. Testing confirmed triple-negative breast cancer, and within weeks, a PET scan revealed it had spread to my liver and possibly my spine. That’s when I was told it was stage 4.

My doctor told me that if I hadn’t been as proactive as I had, I probably wouldn’t be alive today.

Beginning treatment and facing complications

I began chemo in April, right after my port surgery.

The first treatment didn’t work. The tumor continued to grow and became infected, landing me in the hospital for four days. It was excruciating.

Eventually, I switched to a targeted therapy, an antibody drug conjugate, and it began working quickly.

I recently had a mastectomy

Once the tumor and lymph nodes shrank, my oncologist agreed that I could undergo surgery.

On September 22, 2025, I had a mastectomy with an aesthetic flat closure. The surgical team removed 18 lymph nodes, 15 of which tested positive for cancer.

The recovery went better than I expected. My doctors were supportive, and I felt immense relief knowing the tumor was gone.

Continuing treatment and finding hope

I’m still on chemo. My doctor explained that stage 4 triple-negative breast cancer typically means lifelong treatment, but I’m responding well. I also do hyperbaric oxygen therapy and lymphatic drainage.

Even with treatment fatigue, I try to stay positive. I’ll be attending the San Antonio Breast Cancer Symposium as a patient advocate in December, which gives me purpose and connection.

I try to stay positive, but I will say chemo has affected my mental health so much.

How creativity keeps me alive

Creating helps me cope.

Jewelry-making is meditative; it lets me focus, breathe, and be present. Even during chemo, when fatigue and brain fog hit hard, I’ve found comfort in carving, designing, and creating meaningful pieces.

I’ve also created silver “Butterfly Portal Pendants,” symbolizing hope and transformation. I donate the proceeds to metastatic breast cancer research.

The wax carving I do is a really meditative process… when I really get into my flow, I can forget about cancer for a little bit.

Stage 4 is not a death sentence

Stage 4 breast cancer is not a death sentence. There are many subtypes, and everyone responds differently.

Treatments are getting better each year. I know women who’ve been “no evidence of disease” for over five years on their first line of treatment. I hold on to that hope.

Many women have lived beyond ten years, some even twenty-five years, with metastatic breast cancer.

What I want others to know

You are your own best advocate. Doctors are wonderful, but they don’t live in your body.

Trust your intuition. Push for answers. Seek second opinions if needed. At the end of the day, you’re the one living with the results. Empower yourself.

Thank you for sharing your story, Nicole!

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

Post author By Chris Sanchez
Post date October 27, 2025
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October 27, 2025

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

Dalitso was diagnosed at 38 with stage 4 breast cancer. Eight years before her diagnosis, she noticed an unusual fatty lump in her left breast. Even after mammograms, the doctors she saw weren’t initially alarmed. In the succeeding years, she experienced fibromyalgia pain, weight loss, spasms, and eventually had a spinal fracture that revealed not only that she had breast cancer but that it had spread to her bones.

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

Dalitso’s life changed drastically in 2020. She had radiation and long-term treatments, including a combination of oral and injected medications. While these treatments were ultimately effective against her HER2-positive and invasive ductal carcinoma (IDC) breast cancer, they brought intense side effects, including neutropenia, anemia, heart issues, and overwhelming fatigue. She spent many days in the hospital, yet she embraced moments of connection, like cuddling with her children in the hospital bed. Eventually, the treatments led her to hospice care for palliative support, where she faced some of her most challenging days.

Despite these hardships, Dalitso found reasons to keep moving forward. She leaned on her faith and her family for strength. Even small projects, like planning home designs, gave her a sense of purpose. Her love for travel never faded; she managed to visit Paris, albeit in a wheelchair, and returned to her home country, Malawi. These were experiences she once thought were impossible.

Dalitso’s perspective on life has evolved into one of gratitude and authenticity. She focuses on “doing life,” raising her kids, being there for her mom, and staying connected with friends. She still manages the physical pain and continues ongoing treatments, but celebrates milestones like graduations and opens the memory boxes she once filled with letters and gifts for future moments she feared she wouldn’t see.

Dalitso’s story is a reminder that living with metastatic breast cancer is not just about treatment. It’s about finding meaning and purpose and celebrating small joys each and every day. She encourages others to know their ‘why,’ their reason to live and persevere; to stay connected to loved ones; and to embrace life with honesty and hope.

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

How her journey reveals the power of resilience, from a missed diagnosis to stage 4 breast cancer
The way faith and family kept Dalitso going through pain and uncertainty
How a mother’s love fuels her struggle against metastatic breast cancer
The experiences, including travel and small joys, that brought hope in Dalitso’s darkest moments
How knowing your ‘why’ can change everything in a cancer experience

Name: Dalitso N.
Diagnosis:
- HER2+ IDC (Invasive Ductal Carcinoma) Breast Cancer
Age at Diagnosis:
- 38
Staging:
- Stage 4
Symptoms:
- Appearance of large tumor in left breast
- Severe back and body pain
Treatments:
- Surgery: hysterectomy
- Vertebroplasty
- Radiation therapy
- Hormone therapy
- Clinical trial

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

Hi. My name is Dalitso
Eight years before my diagnosis, I noticed fatty tissue
I had a second mammogram, and it revealed breast cancer
When I heard I had stage 4 breast cancer
I started radiation
I was experiencing side effects from radiation
I started hormone therapy
I went on hospice
I wanted to travel
My cancer spread
I started a new treatment plan
I was declared No Evidence of Disease
How my diagnosis has affected me being a mother
I look at life differently now
What I want others to know

Hi. My name is Dalitso

I was diagnosed with invasive ductal carcinoma in 2020 at the age of 38.

I am most passionate about people. I was a mental health therapist before I retired due to my cancer diagnosis. In our house, three generations live together. When it comes to fun, for me, it’s everything that revolves around going to the beach together, swimming, cooking, and traveling together. There’s always food at my house. I used to travel a lot before I got ill. That’s always a goal.

Eight years before my diagnosis, I noticed fatty tissue

It started with this fatty tumor tissue that I had eight years before my breast cancer diagnosis. Even after I had a mammogram, the doctors didn’t seem too concerned. It was getting harder and harder, like a golf ball. Then I started having fibromyalgia pains for years, and I was doing everything I could, like CrossFit and various other activities, to get my health back on track.

Come 2018, I started working with my doctor because I had a history of autoimmune Hashimoto’s. So we thought it was coming from that. So we really went strong, and we were dealing with that. But I lost a tremendous amount of weight. And so it really was very unsightly. Half of my breast was sticking out at the time.

By 2020, I was feeling a lot better. I had more energy. But I had back pain, and I was seeing a chiropractor. I was getting a lot of massages, but I just kept having these spasms.

I had a second mammogram, and it revealed breast cancer

I was getting off the examination table, and I was wincing because getting up my back was sore. And he looked very concerned, and I went, “You’re a breast surgeon. Why are we focusing on my back?” And he just looked very concerned.

The following day, he called me after an emergency PET scan and told me that it was actually stage 4. It had metastasized to my bones. And I actually was walking around with a fracture on my spine. That changed the course of treatment.

When I heard I had stage 4 breast cancer

I remember that day very well. I was newly divorced in 2018. My youngest daughter would spend one week with me and one week with her dad. She had just come back, and we were just sitting on the couch after I came back from work, and we were trying to figure out what kind of movie we were going to watch. And that’s when the doctor calls me and tells me the news.

And I was just shocked. And I still didn’t really quite comprehend what stage 4 meant. I think I was more shocked that I had a fracture in my back that prevented me from wearing the shoes that I love. I just thought, “Okay, it’s a higher level of staging.” In my mind, it wasn’t like, “Hey, this thing is going to kill you,” or “This thing is terminal.” It didn’t really hit me. I just said, “Okay,” and went on to watch a movie with my kids. I think it slowly hit me as we went along.

I started radiation

I was supposed to go and have palliative radiation on the fracture in my spine, not even on the breast. I did have a couple of hotspots, but the fracture was really causing pain and all that. I was also going to go in and start chemo with the oncologist.

But on my way there, the bone actually fractured all the way through. I was in the infusion center, but I was completely paralyzed from the belly down. They had to bring me to another place around the corner in an ambulance, where they did an emergency procedure that involved an epidural needle and injected a sort of liquid cement into the fracture in my spine. It was high intensity, short duration. No one could drive me. I had to drive myself, and I had 20 minutes after the procedure to get home and eat, and then I would just be wiped out and fall asleep.

After that, we started working with the oncologist. There’s no end to treatment when it comes to stage 4 cancer. It’s a matter of two things: how well you’re tolerating it, and how well the cancer is responding to it. My treatment was a newer drug combination that came out a couple of years ago for metastatic breast cancer. It worked really well on the cancer, but I had a hard time with it. One of the two drugs was injected, and the other one was ingested, through pills. On the first day of my pill, that’s also when I went in to get my shot. And that day, and every time I would go in, I’d stop breathing, and so it would become this emergency requiring Benadryl and steroids. We tried different combinations. Two nurses would do this and do that. Sure, the cancer was responding to it, but then I was developing all the other side effects.

I was experiencing side effects from radiation

The radiation was going into my bone marrow. My blood cells were becoming distorted, I was having heart issues for which I ended up in a hospital, as I mentioned, I also couldn’t breathe, and then, yes, neutropenia. I really started to feel them as the weeks went on. All this is not-so-fun stuff. Every six weeks, I ended up in the hospital.

Whenever I’m there, my kids always come and we cuddle on the bed together, literally squeeze into the bed together, and sometimes nap for as long as they allow us to. So that’s something we always do when I end up in the hospital.

I started hormone therapy

What I took is considered adrenal hormone therapy. The medications are working on disrupting the cancer’s attachment to the hormone. I did that until I started to need to get hospitalized constantly.

The cancer had already caused so much inflammation. Not only did I have the localized pain where the fracture had happened, but I was also constantly in physical pain. It was like the worst kind of flu, or like someone running me over with a dump truck.

So by August, we were trying different things. We tried certain pain medications. We tried changing to other medications. It was the same situation. We took a break from the medications in October. But I was still ending up in the hospital every so often. My white blood counts were tanking. The radiation had caused effects on the red blood counts, too. I was constantly anemic. So there were all these side effects that I was dealing with. We kept delaying it until the following year, 2020, on the first of April. And we tried one more time. And immediately, I was sick again, and it just spiraled. So in August 2021, I ended up in hospice.

I went on hospice

So we had to invite hospice palliative. They tried very hard, but I just kept going downhill to a point in 2021. I was saying goodbye to the kids. I was calling the kids’ schools and saying goodbye to friends. It was really bad. I just remember this one week where it was like living moment to moment, and it was just a vigil. My mother was not sleeping. It was a very, very challenging week. And so they were throwing everything at it right to a point where they threw too much at it.

And one of the doctors just listened to me, and he was like, “You need to be on hospice.” And I was trying to tell my doctor that. And he sent me to a psychiatrist and told my pain management doctor to stop giving me medicine because he said I was just pretending. Which was very upsetting.

I didn’t think I would make it. But by the grace of God, I did. I started pulling through.

I was in hospice for three years. We were struggling with the inflammation that was in my body, caused by the cancer and the treatment that we had. They just were having a hard time, and hospice was having a hard time. You know you’re in trouble because they have the liberty to give you as many things as they can at one point. For nine months, I was walking, sleeping, eating 24-7 with the big IV bag, the 500ml.

There were just days when you just couldn’t predict how you were going to feel. There were days when 4 or 5 nurses were being called to the house, just to come and manage the pain, because it just was not manageable. So I was mostly home, and I barely went anywhere. Because I couldn’t drive. It’s like Groundhog Day, where every day is the same. And if it weren’t for my children and my faith and having my mother with me, I don’t think I would be here right now.

Little things matter. Your perception matters, right? So for me, just having a project, like designing a house, gave me something to do that I didn’t need to leave the house to do.

I wanted to travel

There was a picture where I was sitting, it looked like on the patio, where I was just 85 pounds. I wasn’t a big person to begin with, I’m 5’1”. But I definitely wasn’t 85 pounds when I started this whole affair. It’s like all you could see was my head.

I had such a goal, though. I wanted to travel. I had promised to take my oldest daughter to Paris when she graduated from high school. I couldn’t do it. But my ex-husband surprised us both by taking us to Paris.

I was in a wheelchair for most of the trip. But it was still worth it. My ex-husband was just really amazing, and so were the girls. And we did everything.

I also really wanted to travel back to my home country, Malawi. I never thought I would make it back there alive. It was a big thing. My doctor was so encouraging. He went, “You can do it.” We did everything we could for me to take a five-week-long trip to Malawi, which was just so surreal. I remember landing back at the airport. I just wept, because I thought I was going to go back in a cremation box. So being able to come back alive was the best feeling.

My cancer spread

I was beginning to have some pain that just didn’t feel quite right. So I tried to get off the medication. That was horrendous, but I was able to feel that something was wrong.

So I went back to see my oncologist, and the cancer had spread. Some of my ribs and my sternum were broken. The cancer had spread into the ball sockets of my hips. I had extra fractures in my spine. So that’s what was causing the pain. So at that point, that was actually more challenging. Hearing that than the first time around.

My kids lost it. They did not want to hear about treatment because treatment is what brought me to palliative care.

I didn’t want to go back on treatment because I had vowed that I would rather just live my life instead of going back on treatment. I told my kids, “I wish mommy was able to do a lot of things, but I can’t decide where the cancer spreads.” Right? So that was more devastating. I was scared this time.

I started a new treatment plan

The doctor was going to put me on this new trial in which participants have had fewer side effects. It was already a phase two trial. The first thing I needed to do was to do radiation on the spots. I had no pain in my ribs and my left hand side, where the ball socket was very necrotic, and other places on my back. So we did that again. It was more intense than the last time. I just started not feeling well. I was swelling. I had blood clots. I had pneumonia for four months. So finally they had to they had to take me off that drug. And I’ve been doing relatively well since then.

I was declared No Evidence of Disease

My sister comes in, and I said, “Hey, what’s going on with the CT scan?” And she was like, “Oh, I didn’t tell you. The doctor wanted you to know that there’s no evidence of disease.” I’m like, “Wait, what does that mean?” “We don’t see anything. You’re good.”

It was such a surreal moment. Amazing. But I still struggle. Because I’m still in a lot of pain. So that’s sometimes hard, you know? And I still take the same meds because you have to continue taking them. So nothing much has changed. But it’s still something I am very, very grateful for.

How my diagnosis has affected me being a mother

It really was very hard, especially for the first eight months. My little one had to live with her dad almost full-time. That was devastating for both of us and for my kids. You know, I’ve had my oldest daughter see me being pinned down in the hospital because somebody is trying to get a vein, and I’m screaming and all that.

But what’s interesting is you don’t stop being a mom in the middle of it.

I would tell them to stop, and I would send her out of the room. And so that was my biggest motivation. If it were not, you don’t get a day off from being a mom. You still do homework when you’re sitting on the bed, you know? You do what you can, and you do it because of them. Right. And their activities and what’s going on in their lives give me motivation. Right now, I got up and I showered, and I did that because I’m going to go pick up my daughter from school. You know what I mean?

Motherhood gives me things to do and to look forward to. It didn’t motivate me to just keep going. It gave me the energy. They still have to be fed, right? You can feel sorry for yourself for a second, and then they’ll say things like, “Hey, I need to be dropped off at a volleyball game. I need this to happen. I need that to happen.” And you just pick yourself up, and you just go. And that has given me the push. To feel sorry for myself, but not to be in bed all day.

I look at life differently now

I get tired of being in pain; that’s like Groundhog Day. What do you have to look forward to? Pain. Right where I was five years ago compared to where I am now. It’s. It’s different. I’m tired of it. But there are such beautiful moments in there as well.

Five years ago, I created these boxes for my kids when I thought I wasn’t going to make it. I wrote letters for their first day of high school, graduation, marriage, picking their wedding dresses, all those things. I wrote all these letters. And this year, I was able to attend my oldest daughter’s graduation, and I was able to go in her box and pull out the letter that I wrote for her graduation.

I’m pulling other things out, too. For instance, I had bought them my beautiful personal perfume. I had bought each one a bottle because I wanted them to have it. And last Christmas I gave it to them because I don’t want this perfume to expire. It’s this amazing opportunity where I’m beginning to empty these boxes. And they’re hitting these milestones.

Surviving is just doing life. Just trying to do life like everybody else. Trying to find solutions. I still have to take care of my family. I still have to raise kids. And I still have to be a daughter to my aging mom. And I still have to be a friend to my friends. I still have to be all those things.

We all have a lot. Everybody has something. I look forward to every day. It’s like, “What am I today?” And I try to have something that I achieve.

What I want others to know

Know your ‘why.’ Know your ‘why.’ I’m a person of faith, but I’m also a mental therapist. I always used to say to people, “When you don’t have a ‘why,’ your reason for doing things, it’s hard to be motivated.”

It’s very easy to be fearful, right? I really don’t have a fear of dying, because everybody’s going to die. But I have a ‘why.’ And my ‘why’ is the people around me, my children, my nieces and nephews, and my mom. And so cancer is just a nuisance I deal with. It’s like allergies. I’m like, I gotta deal with this, but I don’t have to accomplish. There’s some grief for what I’ve lost in my life, but I still do counseling with friends and family. Friends call me. Maybe I’m not getting paid for it, but I’m still having a purpose for my life.

My friends call me, my kids call me. I have a women’s group, we meet every week and every month, and we talk about just our lives, and we’re invested in it. And I’m living life, right? I’m living life.

And if you know your reason and you just hold on to that, cancer just becomes that thing that you need to move aside so that you can get to where you need to be.

Thank you for sharing your story, Dalitso!

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

Post author By Chris Sanchez
Post date October 25, 2025
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October 25, 2025

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

Melanie was diagnosed with stage 4 ovarian cancer in the fall of 2022, and she speaks about the many ways her life has shifted since then in Hawaii, where surfing, yoga, and family once defined her day. Melanie shares openly how her relationship with her son Velzy became a lifeline. Instead of clinging to fear, she leaned into self-improvement and gratitude.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

From the start, Melanie’s positive mental outlook shaped her approach to living with ovarian cancer. She acknowledged her BRCA1 mutation and the reality that screenings don’t always catch the disease early. When symptoms like abdominal swelling, stabbing side pain, and a persistent cough appeared, she confronted them head-on, taking ownership of her health by researching, seeking testing, and ultimately listening to her intuition. Even when the diagnosis confirmed stage 4, she faced it with calm focus, reminding herself of the same mantra she used while big wave surfing: “panic only when your feet hit the sand.”

The emotional work has been as important to her as physical treatment. Melanie describes feeling a surprising calm after reading survival statistics, and even excitement as she realized the possibilities for self-improvement. Even when her marriage ended, she embraced the opportunity to be more present for her son and to live more authentically. Letting go of conventional “hope” gave her the freedom to experience what each day offers without carrying the weight of future expectations.

Melanie’s advocacy is clear and empowering. She encourages others to filter outside noise and trust their medical teams, while also drawing boundaries that protect mental health. She is open about both the difficulty and the blessings of ovarian cancer: from surgical menopause and physical loss to the deeper healing of self-awareness and renewed love for her son. Each treatment cycle, each surf session, and each mindful moment all reflect her commitment to owning her experience: her health, her choices, and her life.

Watch Melanie’s video and scroll down to read the transcript of her interview. You’ll learn more about:

The unexpected comfort she found when she refocused on her relationship with her young son
How surfing mantras helped Melanie face stage 4 ovarian cancer with calm
The moment she recognized that she had all twelve symptoms of ovarian cancer
Why setting boundaries became a life-saving act of self-care

Name: Melanie E.
Diagnosis:
- High-Grade Serous Ovarian Cancer
Staging:
- Stage 4
Mutation:
- BRCA1
Symptoms:
- Cough
- Stabbing pain in right rib area
- Bloating
- Frequent urination
- Moodiness
- Fatigue
Treatments:
- Surgery: debulking surgery including full hysterectomy
- Chemotherapy
- Immunotherapy

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

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

Transcript of Melanie’s Interview

I'm Melanie
I did genetic testing when I was a teenager
What happened next
The moment everything changed
I had to change my mindset quickly
My treatment plan
I asked my doctor if we could skip the hysterectomy
The plan moving forward
I’m open to clinical trials
The biggest challenge I’ve faced during my diagnosis
What parenting looks like with cancer
My advice to others

I’m Melanie

I’m from Hawaii. I have stage 4 ovarian cancer. And I was first diagnosed in the fall of 2022.

I did genetic testing when I was a teenager

I knew that I carried the genetic mutation BRCA1. It’s a genetic mutation that a lot of women have that puts them at high risk for breast and ovarian cancer. I knew this because of my family history. I had gotten tested because I knew my dad was positive for it. I got tested in 2014.

I had biannual screenings for both breast and ovarian cancer in March 2020. Everything was fine. However, my oncologist at the time had explained to me that the screenings that we were doing for ovarian cancer were like wearing your seatbelt in an airplane crash. Would they be helpful? Maybe. But the likelihood of them actually catching something early enough would not be very good.

A couple of months after that, I noticed a stabbing pain in my lower right side. I thought maybe it was appendicitis. And I just took a bunch of garlic. I’m a yogi, an all-natural type of girl. So I thought, “Oh, you know, if I have a slight infection in my appendix, I’ll just take the garlic.” And it actually did go away. Then I developed a dry cough, and I also got COVID within weeks of developing the cough, so I just thought it was probably lingering COVID symptoms.

At the time, my husband, my son Velzy, and I were on a surf trip. We were traveling in Central America — Nicaragua, Costa Rica. And around the last couple of weeks of our trip, my abdomen started swelling up. I would eat something that would normally give me a little bit of gas, like, say, beans, which are, of course, very common in Central America. But it wouldn’t be a little bit of gas; it would be excruciating. And I started eating less and less, and I noticed that my weight was dropping. But my abdomen remained distended most of the time. I thought that maybe I had a parasite. I also thought I could be pregnant; my hormones seemed crazy. I was nauseous too. I was reacting to situations in ways that I wouldn’t normally do. So I took a pregnancy test and found out that I wasn’t pregnant, because my cycle was weird too. So next, I thought I’d go on a parasite detox, because the likelihood that I had picked up a parasite in Central America was pretty high.

So, all that was going on, but in the back of my mind, I was also considering that I was genetically predisposed to ovarian cancer. So a few days before we were scheduled to return to Hawaii, I Googled the symptoms of ovarian cancer, and a list of twelve symptoms came up. I had every single one of them.

That’s when I had to just take a deep breath and go see the doctor.

What happened next

I made an appointment right away to see my oncologist and get testing done in Hawaii. The medical system is slow, and there was a week’s delay before I could get any testing done, so it was a long week of using my yoga practice of just trying to stay in the moment, trying to feel the sensation of fear in my body, trying not to let my thoughts spin out of control. Because I actually there was nothing more I could do until then. I had done my due diligence. After I made the appointment, everything else was out of my control.

I had a pelvic ultrasound. I remember the ultrasound tech seeming nervous within minutes of putting the gel on my belly, and she went, “I’m going to go get the doctor.” So she came back in with the doctor, and the doctor said that she would be sending the images to my oncologist and that she thought it was related to my BRCA1 mutation. That afternoon, I had a blood test, and my oncologist’s office called me and said that they needed to see me in person the next morning. And so that’s when I was like, “Okay. Here we go.”

The moment everything changed

The ovarian cancer blood marker test is called CA-125. That evening, after getting the ultrasound and the CA-125, I was able to open the MyChart portal. I saw that the blood markers were ten times higher than normal. So I kind of knew right then.

The next morning, I called my friend to come with me to the oncologist. Since that was still the time of the pandemic, I couldn’t bring my son with me to the doctor, and my husband stayed home with my son. The gynecologist was saying, “This is what we think it is.” We didn’t have anything concrete yet at the time; no biopsy had been done, but he had done the exam, and he had felt nodules. And he had seen hundreds of cases like. mine.

I was grateful for the way that he said it. But I was also thankful for the fact that my friend said, “Just tell us.” He said, “We think this is ovarian cancer. We think it’s in your lungs, too, because of your cough and your other symptoms, the pleural involvement. So it’s most likely stage 3 or 4.”

In that moment, I was pretty calm. You know, nobody’s completely calm when they hear cancer. That’s a heavy word. But because of my background in surfing, I’ve trained myself to stay calm in very scary situations. There’s a mantra I use in surfing. “You can panic when your feet hit the sand.” It’s good to feel all of those emotions, but not right now, not in the moment.

So I took deep breaths and tried to remember everything he was telling me. And then my friend and I walked outside the hospital. That’s when we just melted down together.

I didn’t tell anybody except for my parents at the time because I was scheduled for surgery two days later, as well as a CT. We wanted a surgery because in Hawaii, it was impossible to get me in for a biopsy, but it was much easier for the doctor to schedule a laparotomy. This would involve him sticking a scope in to see what was going on, as well as taking biopsies at the same time. It’s just the way the medical system is here — things can be a little bit slow, a little bit turned around. So I was so grateful that he did that.

Days later, we got the official biopsy results. And then I officially knew what type of ovarian cancer I had, what stage, and what grade, and all of that. And it didn’t come as a surprise at that point.

I had to change my mindset quickly

Perhaps my experience is similar to others’, but it may also be different for various reasons. Many conflicting things were happening. Obviously, there was terror. I remember opening the MyChart portal and seeing what was there.

My immediate reaction was like, “Let’s start juggling this. What’s the prognosis?” Blah, blah, blah. And then I just sat there, and I was like, “Take a moment. Feel this.” I remember feeling scared and out of control, and grasping at control. But I also remember this growing sense of curiosity and even excitement.

I’ve been through two major health challenges before this one. The first was an eating disorder, and the second was an injury that kept me mostly in bed for months. Though both of those things changed my life for the better in enforceable ways, and I would not go back to how I was before them. If I had the choice to not have that eating disorder or that injury, I wouldn’t choose to because they happened for the highest good. I’m happy with who I became and what I learned through them.

So when I saw that I had metastatic cancer, for which the five-year survival rate was 17%, I thought, “Game on.” I’m about to go through the hardest thing I’ve ever been through, and I just had this peace that it was going to be for my highest good — even if I didn’t survive it. I felt that something was going to come out of this, whether for me or for my family, for my child, for my parents and my siblings, or for the world in general. That good could not have come had I not had cancer.

I don’t want anyone hearing this to feel like they should feel that way, too, or that it’s some kind of spiritual bypassing. There was terror, and even talking about it now, I’m very emotional. like you know. I just had this peace and knowledge that came from another place that this was going to be for my highest good.

And I was excited. I’ve always loved a challenge. That’s just the type of person that I am. So, yeah, looking at those results in black and white, I felt like it was another big wave to surf.

My treatment plan

Right away, my doctor talked to me about the standard of care. He said, “You’re going to need neoadjuvant chemotherapy, four rounds of chemo. Then a surgery, then four more rounds of chemo.”

He also went through the likelihood of the response rate. He said I was likely to respond, which is so interesting because I didn’t understand the difference between response rate and five-year survival rate. So he explained to me, “We’re really good at putting this kind of cancer into remission. We’re just not really good at curing it.” Yeah, I was hesitant. I mean, I didn’t take aspirin before this if I could help it. I didn’t take antibiotics. I always treated myself with alternatives, Chinese herbs, and things like that.

But in this case, I was able to decide quickly. The doctor said, “You know what, this is stage 4, this is very serious. We don’t have time to mess around here.” He told me that the doubling time of ovarian cancer is twenty-eight days, and so they’re really wasn’t a lot of time for hesitation.

Initially, I thought, “Oh, do I really want to do this?” But within a few minutes, I decided. “We’re doing this.” I felt comfortable with my doctor. I really loved him. So I went ahead and did my first chemo there as well as the surgery.

I asked my doctor many times if it would be possible to do my debulking surgery laparoscopically, since I didn’t want to be split open top to bottom, given that I am an athlete, and that’s an important part of my life. He did a wonderful job; my recovery was much easier than I thought it would be.

However, the cancer came back months later. I was hesitant to do my chemo again in Hawaii, not necessarily because of the medical system, although I did want a second opinion because of the second occurrence of cancer. The more the treatments begin to branch off, the first line is always the same, and the second line is very similar. But then, with the third and the fourth, things get more complicated. And the biggest thing was the lack of support. I don’t have any family here, and through all of this, my husband and I struggled to find a rhythm together and also struggled financially. So I decided for my second line to go to the mainland and live with my family in Michigan, where there’s very good medical care. They call it the medical mile. I do feel like, at some point, as far as the availability of clinical trials and doctors who are researching the cutting-edge treatments, there are definitely more on the mainland.

I asked my doctor if we could skip the hysterectomy

I didn’t want menopause. And I also love the rhythm that my cycle puts into my life and the way that I’ve organized the flow of my month around my cycle. I was afraid that I would lose some sort of femininity if I had a hysterectomy. I was also afraid of being cut open and the recovery time, since I was surfing; after a surgery like that, you can’t lift more than five pounds for 12 weeks. I thought that I might not recover to 95% of my old level or even 50% of it. I was really afraid.

I went on a Facebook group for women with ovarian cancer, and one part of my body that I have always loved is my abdomen. And I asked if anyone was willing to share their photos of their surgery scars. I was so blown away by these women. Some were elderly, but some weren’t — they might even have been Instagram models in great shape, and proud of their scars up and down their abdominal areas. They were so proud of what their bodies endured and how their bodies showed up for them and helped them to move on.

So I was so much more comfortable with what was about to happen. But I still begged my doctor to do the operation laparoscopically, and he obliged me.

I remember that day, me going into surgery and saying goodbye to my best friend, who held my hand right until I went in the door. And I was terrified when I was about to be put under. Of course, I fell asleep within seconds. When I woke up, I was already in my recovery room, where I saw that there was a bassinet and signs on the wall about breastfeeding positions. I was in a labor and delivery room. A nurse came in and I asked her about it, and she said, “This is where we put all the people with the lady bits.” And I said, “But I don’t have lady bits anymore.”

I was devastated and still am today, every time I see a mom with a baby. But at the same time, I’m relieved. My child was so much work. Giving birth was so brutal. And now, I don’t have to go through that again. There are other options for children.

That being said, I will never grow a child inside myself again. I will never give birth again. I will never breastfeed again. And those are losses. Those are big losses.

The plan moving forward

I’m on an oral chemo medication, a PARP inhibitor. It didn’t seem to be doing its job, so we added Avastin, a medication that stops blood vessels from forming and basically makes the cancer more susceptible. Unfortunately, it also makes my whole body more susceptible to the other oral Chemo. So I get an infusion every three weeks and take oral chemo every day.

Right now, I’m stable. I just had a CT scan this weekend, and nothing has progressed in the last three months. So the treatment that I am on is at least keeping me stable, and I honestly feel pretty good on it.

I’m not where I would be if I didn’t have cancer and wasn’t on any treatment. But I still surf and work out daily. I teach yoga. I do massage therapy. I keep up with my son. It’s a lot, and most of the time, I have the energy for it. Of course, there are things like migraines, constipation, neuropathy — all of these things that come along with chemo, but maybe they’ve just become part of my life.

I’m open to clinical trials

At this point, since my cancer is stable, I don’t have to make that decision. But somewhere down the road. It will be decision time. And if I have to make that decision. I will need to leave.

There is an option with some of these trials. There are really good trials in California, and the flight to California is quite easy, and it would be like a once every three weeks type of thing.

And when you get a diagnosis like cancer, you notice the benevolence of humanity. So many friends have come out of the woodwork and have told me things like, “You can have my place. You can have my car. I will help you with airfare.” So if it comes to that, I’m prepared to make that call or go back to Michigan and be with my family in the end. I know that if we ever get to the point that treatment stops working, I would end up in Michigan with my family.

There definitely are options, and they’re on my radar.

The biggest challenge I’ve faced during my diagnosis

My marriage has actually been the hardest thing. After my first line of treatment, it wasn’t anything new. It happened when my son was a child. My husband has a mental illness and didn’t have the capacity to show up to be the father and the husband that I needed him to be with a child. That was that much work. And I guess a part of me really hoped that a diagnosis of terminal cancer would be enough to shake him and get him off the couch, and it wasn’t.

When my cancer came back for the second time, I had already agreed to myself that if my cancer returned, I would not do chemo with him as my main support system. I would need to go to Michigan and be with my family. Which is a big decision, given that surfing is a giant part of my life and being outdoors and all of that.

So when the cancer did come back, along with many other feelings, I felt relief. Because I finally had a reason big enough to leave him. And after treatment, we separated.

Honestly, drawing boundaries and not being codependent have been the biggest lessons of cancer. And that is how I have changed the most. And I honestly feel that menopause has been such a blessing. Talk to any woman who has gone through menopause, and she might tell you that one of the things that she notices is that people pleasing is reduced greatly. This has been the spiritual work for me.

I believe this is cancer came to me to level me up and help me to grow the spine that I needed to protect my energy. So that I am nourishing myself and nourishing my son and not nourishing people who have the capacity to nourish themselves. And so that is the biggest change.

What parenting looks like with cancer

My son just started kindergarten, and it is a breath of fresh air. But until that time, honestly, I relied on caffeine a lot, because he would drive me out of bed way before I was ready to get up, and I generally go to sleep with him at 8 pm, and by 6 am, I’m a rise and shine mom. But I could use 12 hours of sleep a day easily, and even more when I was taking chemo infusions. So we always napped together when he was still taking naps.

I did pay a lot of babysitters. I did have to humble myself and ask a lot of friends and neighbors. “Can you just take him for an hour?” And that was really hard because a lot of times, I was asking a neighbor for help while my husband was available to help, but not willing.”

Now that he’s in school. I have those six hours to spare for what I need to do to make my house feel like a nice place. So I can relax, meditate, lie down, and close my eyes for twenty minutes. So that when he comes home, I am fully his and I am present with him. I still have to have afternoon caffeine to get me through like that.

But the biggest thing that’s changed with parenting is how much I appreciate the gift of being able to parent. Lying in bed with him at night should take him like an hour to fall asleep, and I would want him to sleep right away so I could have some me time. Now, when that happens, I can’t say I don’t feel that. But I catch myself and I go, “Melanie. This is amazing, you are playing in bed with this little thing that loves you so much. Can you just let your chest rise and fall with his?”

It’s so much easier now to just show in those moments and appreciate sitting on the floor with my back hurting, playing with Legos. I can actually really love and appreciate that in a way that I never could have if it hadn’t been for the diagnosis.

My advice to others

The answer can be a blessing, at the same time as being the most awful thing. It has been for me. It’s changed me. It’s shaped me. It showed me the goodness of humanity. I have stronger relationships. I love my body more than I ever have. I appreciate my son more than I ever have. My anxiety is all but gone. I am a better person for having had cancer and having been treated for it. Honestly, it has never been worse than being pregnant.

This is my experience. It doesn’t have to be brutal. There are moments, of course, that it is brutal, and other moments when it’s just not a big deal.

And so I would want anybody who is newly diagnosed or worried about a diagnosis to just know that it doesn’t have to be awful. And that you can do it. And that it has hidden blessings as well.

Thank you for sharing your story, Melanie!

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

Post author By Chris Sanchez
Post date October 24, 2025
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October 24, 2025

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

This is Marissa’s experience with stage 4 breast cancer. She first noticed that something was wrong when she felt unusually tired, had restless legs leading to sudden painful cramps, and experienced hot flashes at night. Like any busy mom with two little kids, she brushed these symptoms off at first, until a lump in her right breast prompted her to see her doctor. After multiple scans and a biopsy, Marissa learned she had stage 2 invasive lobular carcinoma and carried the BRCA2 gene.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

At just 31, with a young family and a recent move, Marissa felt overwhelmed. She found it complicated and challenging to transition into treatment; traditional options like chemotherapy and radiation scared her, especially with all the potential side effects. Initially, she chose integrative care, hoping to support her body naturally. But nine months later, scans showed that the breast cancer had spread to her bones, elevating her to stage 4. This became a turning point; she began hormone therapy and low-dose chemo, and she saw her breast tumors shrink. Looking back, she openly shares the regret of delaying certain treatments, but she also stresses how vital it is to feel comfortable and supported in your care decisions.

Through it all, family has been Marissa’s anchor. Her mom and stepdad even moved states to help with childcare, homeschooling, and daily life, allowing her to focus on her health. Being a mom with cancer comes with heartbreaking worries, which she tries to counter by writing letters and recording her voice for her kids, but it also inspires her to cherish every moment with them. She admits some days are tough with bone aches, fatigue, and migraines, but other days are filled with laughter and gratitude.

Marissa wants others to know that metastatic breast cancer isn’t simple. Treatments work differently for everyone, and emotional support is just as important as medical care. She encourages anyone navigating a diagnosis to seek multiple opinions and choose the path that gives them peace. Comfort, whether from family, a supportive medical team, or a healing space, makes a world of difference.

Watch Marissa’s video and scroll down for the transcript of her interview to delve into:

A young mom’s journey from worrisome symptoms to a life-changing diagnosis
How one woman balances motherhood and metastatic breast cancer with grace
The emotional turning point that shifted Marissa’s treatment approach
Why comfort and community became her lifeline through stage 4 breast cancer
Marissa’s honest reflections on regret, resilience, and cherishing every moment

Name: Marissa T.
Diagnosis:
- BRCA2+ ILC (Invasive Lobular Carcinoma) Breast Cancer
Age at Diagnosis:
- 31
Staging:
- Initially stage 2, progressed to stage 4
Symptoms:
- Appearance of lump in right breast
- Significant fatigue
- Hot flashes at night
- Leg restlessness leading to sudden, unexpected leg muscle cramps
Treatments:
- Chemotherapy
- Hormone therapy
- PARP inhibitor
- Integrative medicine

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

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

Transcript of Marissa’s Interview

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

My name is Marissa

I was diagnosed with invasive lobular carcinoma breast cancer last year. Which would have been February 17th, 2024.

When I first noticed something was wrong

I felt very fatigued, and I was getting hot flashes at night. My legs were restless all the time, so bad that I would pull a muscle. Just giving myself Charley horses at night. I didn’t really think too much of it. I had two small children, and I just thought this was normal. You know, being a mom of little kids and not sleeping well and all those things.

But what really topped it off was that I felt a lump in my right breast, and I had asked my husband to feel it. And he did. I said, “Does this feel normal? And he said, “No, you need to go get that checked out.”

So I went to my primary care physician, and she did a physical exam, which led to a mammogram and ultrasound. I did three of those in one visit. So it was a lot of back and forth. They had a really hard time just realizing what they were looking at. So they decided it would be better for me to get a biopsy done just to confirm if anything was going on.

So I did the biopsy a few days after my mammogram and ultrasound. The biopsy confirmed that it was a stage 2 invasive lobular carcinoma in my right breast. And then I also had some lymph nodes that tested positive as well.

Genetic testing revealed that I have the BRCA2 gene

This is how I found out that I had cancer.

My primary care physician called me on the night of February 17th. I’ll never forget it. She said, “I got your results back. It looks like you have breast cancer. But it looks like it’s in an early stage. So we’re going to set an appointment with an oncologist and a surgeon, and they’ll go over all of your testing with you.”

I set that appointment, and it was a three-hour-long appointment. They went over my diagnosis and the treatment plan that they had for me, which was a double mastectomy if I carried a gene for breast cancer.

My treatment options were limited, so I pursued integrative care

They were skeptical of chemo because lobular carcinoma doesn’t really respond to chemo. So it would have just been hormone therapy, surgery, and radiation. And that would have been the best plan for me.

But I felt very nervous about it at the time. I was 31 years old. My kids were still really young, and we had actually just moved here from Michigan about a year and a half before all of this happened. We were just getting settled into our new life in Arizona, adjusting to everything.

I wanted to do some research to see if there was any approach that I would be more comfortable with. But then, it was as effective to look for other options and get a second opinion from other clinics. So that’s what I did. And I found the clinic that I’m going to. It’s integrative.

I declined all the treatments that I was given because I was just very scared of the side effects from the hormone blockers, including risking osteoporosis and damaging my bones. Because I know that those are potential side effects. I was also scared of the chemo and the radiation. You know, when you do research, you read a lot, and you hear a lot of bad things. It made me really nervous to do those things.

But I also had a very rare situation happen. My BRCA2 gene mutated seven times inside my body, and those genes were resistant to one of the medications I was on. I was on a PARP inhibitor. It’s for BRCA2 and HER2-negative subtypes. So I was on that medicine for about four months before my BRCA2 gene mutated. And basically, the drug was useless at that point.

I got a scan 9 months later. The cancer had spread

The scan showed progression into my bones, which put me at stage 4. I feel like this had happened because I was just super stubborn. I was determined to heal my body without hormone therapy and chemo, radiation. I do regret not starting the hormone therapy much sooner. Had I done that, I probably wouldn’t have gotten to stage 4. Essentially, once I hit stage 4, I decided that I needed to go on the hormone blockers. And as soon as I got on the hormone blockers, a month later, my breast tumors were gone. And I just had the bone metastasis and the lymph nodes to worry about. Had I done hormone blockers sooner, it probably wouldn’t have spread to the bones. I do regret that.

So after that, I started a low-dose oral chemotherapy. And we are hoping it will do something with the bones. It’s a low dose, so hopefully it doesn’t damage my good cells, and it will be enough to wipe out the cancer cells. But it’s just an experiment, because we know that lobular carcinoma doesn’t really respond to chemo. We decided to give it a chance. And I have been on that since March this year.

So I have been on this treatment regimen for a while now, and I feel overall great. It’s just been a challenge trying to figure out what is going to get to my bones now.

How I’m handling the side effects of chemo

I feel like the most I’ve experienced is fatigue. And I try to counter this by taking vitamins. Lots of vitamins that my body needs. I drink extra water, electrolytes, and minerals. I also exercise every day just to keep my body and bones strong.

I think the most side effects I get are from the hormone blockers. Just being in early menopause, dealing with the hot flashes, and, it’s embarrassing to say, but your sweat smells way different when your hormones are blocked, and it’s not pleasant. So I shower multiple times a day and change my clothes often. I had to buy a neck fan just to help keep myself cool. And my bones ache extra from the hormone blockers.

The hardest challenge I’m facing

That’s getting through the day with the aches and the pains in my bones and fighting migraines that I get due to some lesions in my skull. Being a mom becomes a little bit more challenging when you’re experiencing pain. It’s hard to be super patient all the time and have energy to keep up with my kids all the time. But I do the best I can. I go with the flow every day.

Some days are better than others. I’m managing with the help of my mom and my stepdad. They sold their house and moved here from Michigan seven months ago. My stepdad got a job, and my mom doesn’t work. She takes care of my kids all day while my husband works. He’s just started truck driving, so he’s gone a lot. Unfortunately, it was very hard for him to work when I was gone for treatment, and it really did put a huge financial strain on our family for a while. We lost two vehicles, and we were just trying to figure out how we’re going to juggle everything. With him earning just one income, it was just about enough until you add medical expenses and me not being able to work. So, extra expenses on top of not having an income were very hard.

My mom teaches the kids while I’m not able to school them right now. She was a preschool teacher for a long time. So it’s right up her alley. She’s been my rock through it all. She cleans and she helps prep meals, and watches the kids, too. And now my husband’s able to work because she’s able to be with the kids every day.

It’s been a big blessing to our family to have my mom around. I wouldn’t be able to do this without her here.

My diagnosis saved my marriage

I feel like there was a lot of stress moving to a new state. Being a mom with little kids and my husband working added extra stress. I didn’t have any family out here, so I feel like with all the emotions we were going through, I think we hit a hard point in our relationship, trying to figure out how we can have time for ourselves and spend more time together.

I feel like when I got diagnosed, my husband and I had a realization that you can’t plan anything. Life can come to an end anytime for anybody, with or without disease. It’s precious to just value your family and make memories with them. I’ve learned that everything that I do with my family makes memories for them. And I cherish everything that I do with them so much more now than I ever have.

The way that I look at life is completely different, and my husband feels the same way. I feel more appreciated. It was a big eye-opener for both of us. It really did save our relationship.

What people don’t understand about stage 4 breast cancer

It’s not just, “Okay, you do this, do that, and you’re good. It’s done.” It doesn’t happen like that.

Everybody’s bodies react differently. There’s so much to learn scientifically about what goes on in our bodies. Sometimes our bodies don’t cooperate with meds, and then we run out of options. I mean, there’s only so many lines of treatment that we can utilize before we don’t have anything left.

I realized that it’s very difficult physically and emotionally. Just the fear of the unknown, not knowing what’s going on inside you all the time, and fearing all the what-ifs. What if it’s spreading? What if I don’t respond well to the treatment? And what if I’m not going to be around much longer?

I’ve had those thoughts myself before I got more confident and comfortable with my medical team. I wrote letters to my children because I didn’t know how long I was going to be around. I did build-a-bears with my voice recorded in them because I wanted them to have my voice, and I made them blankets because I just felt like I wanted them to be able to have something special that I made them.

I have faced so many emotional obstacles. My kids are everything to me, and I dedicate all my time to raising them, providing for them. I cherish that more than anything. I love being a mom, and my kids mean everything to me. So the thought of just me disappearing out of their lives really ripped me apart.

I think that a lot of people really don’t know much about cancer. It’s hard for them to sympathize with patients because they just don’t know what it’s really like unless they’ve been around people with it or they’re going through it themselves. I just think that the way many people think of cancer is that you just can do chemo and surgery, and you should be okay. Those things are so hard on your body, too.

It’s hard to get through the days when you feel so tired and you’re in pain. Sometimes, you feel like you’re a burden on the people around you.

My advice to others

Get multiple opinions and do whatever you feel in your gut or in your heart that you’re going to have the most peace with and feel the most comfortable. Wherever you feel comfortable is probably where you should be.

I feel like if I were in a place where I didn’t feel comforted or I didn’t have people who were there supporting me, it would not be a place I would want to be in. That’s very important for recovery and healing: the comfort that people bring you, the peace of mind that your medical team brings you if they’re there to support you, determined to help you recover.

Thank you for sharing your story, Marissa!

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