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.
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.
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
Symptoms: Bloody nipple discharge, appearance of “shadow” during breast ultrasound
Treatments: Surgery (mastectomy), hormone therapy
Megan-Claire C., Stage 2 Breast CancerDiagnosis: Stage 2 Breast Cancer Symptoms: Green bruises, sudden weight gain, brittle hair, zit on breast, mass in breast Treatment: Chemotherapy, surgeries, radiotherapy, hormone therapies
Starr’s Stage 4 Colon Cancer Story Highlights the Importance of Second Opinions
At 44, Starr was living a busy, joyful life centered on her kids. “I’m most passionate about my kids,” she said. “Whatever they’re into, that’s what we’re doing. So whatever sports or school activities we’re going to, we’re always running kids somewhere, doing something with them, or having friends over.” She felt healthy and strong, but that changed when she was diagnosed with stage 4 colon cancer that had already spread to her liver and other areas. Her journey toward remission highlights self-advocacy, community, and a whole-body approach to care.
Interviewed by: Carly Knowlton Edited by: Chris Sanchez & Jeff Forslund
It all began with mild abdominal pain that didn’t feel right. Even though Starr was young and seemingly healthy, she trusted her instincts and insisted on getting scans after her primary doctor thought it could just be a UTI. Those scans revealed multiple liver masses, setting off a flurry of ER visits, biopsies, and the life-altering words: “stage 4 colon cancer.”
From the start, Starr understood that conventional medicine was crucial, but she also embraced alternative therapies and integrative medicine strategies. While her first oncologist focused solely on aggressive chemotherapy, Starr listened to her body and her intuition. She sought multiple opinions, discovered targeted therapy, and explored supplements, nutrition, and emotional wellness. This approach not only helped her endure treatment but also prepared her for two major surgeries, which successfully removed her colon and liver tumors.
Throughout the process, Starr leaned into self-advocacy. She didn’t stop at one opinion; she asked the hard questions, researched options, and refused to settle for a plan that didn’t feel right. Her persistence led to care that respected her voice and ultimately helped her move into remission.
Starr’s reflection on awareness is equally powerful. Colon cancer doesn’t always require a family history or obvious risk factors. Starr exercised, drank her green juices, and maintained a healthy weight, but she still got cancer. Her story is a gentle but firm nudge for everyone to listen to their bodies, stay proactive, and seek medical advice even if they believe they’re too young or too healthy to get sick.
Today, Starr calls herself a survivor and a thriver. She’s committed to living her days with gratitude and presence. She celebrates being able to take her kids to school, enjoy nature, and fill her calendar with meaningful experiences. She wants to remind us that while colon cancer might change your life, it doesn’t define it. You can nourish your body, advocate for yourself, and still live fully.
Watch Starr’s video and scroll down to read through the transcript of her interview for more on her story. You’ll learn about:
How she felt healthy, but still got stage 4 colon cancer
Why Starr refused to settle for one doctor’s plan
The whole-body approach that changed everything
How self-advocacy can save more than your life; it can save your hope
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I’m 45 years old. I was diagnosed last year with colon cancer. Stage four, because it metastasized to my liver and other locations. And I live here in Arizona.
I’m most passionate about my kids. Whatever they’re into, that’s what we’re doing. So whatever sports school activities we’re going to, we’re always running kids somewhere, doing something with them, or having friends over. Our lives revolve around the kids, which is how it should be. I love it.
When I first started feeling “off”
I was having a little bit of abdominal pain, and I thought, “Okay, well, this just doesn’t feel quite right.” As soon as I got the abdominal pain, I was like, “I’m going to urgent care.” So it was like two days. So I’m glad I didn’t waste time.
They thought it was UTI. I went to my primary school. I got a scan, and it showed all these masses in my liver. She wasn’t too concerned because of my age. Just being young. And I was healthy, too, but I wanted to do a CT or MRI or PET scan or something. And she said, “Okay, well, to ease your mind. Yes, of course, we’ll do the scan.”
The moment everything changed
That’s kind of a life-altering moment for sure. But I went to my follow-up appointment to go over the scan with my doctor, and she said that, you know, I almost had your husband come in with you for this to go over this, but because she personally knows my husband. But let him come in, and she said, You need to go to the emergency room right now. I have someone there. They will meet you.
So she got me right into the emergency room and set me up with somebody so I didn’t have to wait. And then they did the biopsy there at the hospital, and I found out very quickly. So it all happened really fast. They said, “It’s cancer in your liver, and it’s not the primary location. It actually started somewhere else.”
So that was all of a sudden. Not only did I have cancer, but I had metastatic stage 4 cancer. And it didn’t even start in my liver. It’s spread. It’s in other locations in your body as well. So, I just remember being in the hospital, and thank goodness my friend was with me, and she’s like, I’m going to get your husband down here now. He’s coming down. And it was very scary.
When you hear the words “stage 4” and “terminal,” that’s almost an out-of-body experience.
My treatment plan
My first oncologist was just focused on chemo. Regarding surgery, she was like, “Let’s not even talk about it, because we’re not there. You’re not even close to surgery. It is not an option. Maybe it will be, down the road, but for now, it’s in too many locations and the masses. We need to get the tumors down.”
I did five different treatments for chemo. One is a targeted therapy. I did the intense chemo for eight rounds.
What side effects I experienced
The biggest side effect was the most intense fatigue that you can imagine. I mean, even just talking, I’m sitting there trying to talk to somebody, and it’s just too much effort. Just, you know, keeping my eyes open. I had so much fatigue and nausea. I didn’t want to eat. I lost a lot of weight — over 30 pounds. And I didn’t have a ton to spare.
I also had pretty intense neuropathy in my feet. It’s still there. It could be permanent. I’m working on trying to fix that.
At one point, my skin was peeling off my hands and my feet because of one of the chemos that I was doing. It didn’t really hurt, but it was just really creepy to have your skin just falling off your body.
Right now, from the targeted therapy, I have a red rash. The skin is not like it should be. All through my back, my face, my chest, my stomach. So that’s an ongoing one.
I wouldn’t just be tired but exhausted beyond belief, and I would do the chemo treatments. So it would be like a week of just being down. I’m on the couch, I’m on the bed. I’m not going anywhere. I’m not doing anything. I’m not really eating due to the nausea. Because if I eat, then I throw up. So I want to avoid that. And then after that week, I just start feeling better. More normal. And then the second week would be closer to normal life, but still tired and all that.
But literally half the time, I was just completely not there, just not living my life. And it was really hard. And for my kids to sit there and see their mommy on the couch and go, “We’re going to go out and play,” and I couldn’t even get up to go out there and be with them. So I was losing a lot of time with them.
It was over four months total; I did eight rounds of that. And then after that point, I switched oncologists.
Finding the right care team
My original oncologist wanted to just continue that treatment regimen. And what I kept on hearing from not just him, but also from my second and third opinions, was that this is the standard of care. You continue doing chemo until it stops working, and then we switch. And to me, that didn’t sit right in my brain. So you want me to continue doing something that feels like it’s killing me.
I met my current oncologist at City of Hope, Orange County. He gave me information that I didn’t know about. “Hey, your liver is enlarging because of the chemo.” My oncologist never said that. When I went to a second opinion at MD Anderson, they gave me information that my oncologist hadn’t told me either, that it was also in my peritoneum and lymph nodes. The communication wasn’t quite there with the first one.
He recommended that I stop chemo. We talked about targeted therapy, and that’s what I did. And everything changed after that.
I would take six pills a day. Three in the morning, three at night. And then the biggest thing was I would get infusions every other week.
I was able to get surgery
Every past oncologist told me, “You know, surgery is not an option. Continue with chemo.” But I was able to have the surgery thanks to the targeted therapy.
I started with the new oncologist at the end of November 2024. And I had my first surgery at the end of January. Just two months later. He was able to remove the colon, lymph nodes, and the left side of the liver. And then we waited two months. And then in March 2025, I had my second surgery, which took care of the right side of my liver. It actually had more tumors in it.
But the amazing part is that in both surgeries, when they took out all of the cancer, it was between 95% and 100% dead already. These numbers are amazing. I see numbers that are between 10 and 30% and those are already great numbers. And then when I had the second surgery, 99 to 100% of the cancer was dead.
So the targeted therapy was working. And they just went in with the surgeries and got it out.
I was there for 4 or 5 days. You know, it was an intense surgery. They did a lot. And I have the scar to prove it. I got my warrior scar; I deserve it.
Luckily, I had friends with me. My husband kind of rotated because it was out of state. All my care has been out of state; it’s not just 15 minutes down the road to the hospital or something. To get to the cancer center, I would have had to drive for hours or fly. But it was great to have. I needed support from my husband. Being in the hospital, that’s not fun. A lot of people have a recovery time. I mean, I’m still recovering at six months out. Having all that done to your body is a lot. So just recovery time was a lot of couch and bed time, that’s for sure.
I was not in the mood to eat. They did a good job of getting me up. You know, day one, moving around. I didn’t really want to a couple of times, but they got me moving around, which I think was really best for me. This is good for me. Keep on going. But eating, getting food into my body, was difficult.
My kids made this big welcome home sign. Mostly my daughter did it, but my son helped. But yeah, they made this great sign. It was after my first surgery. I got to come home, and then they were just standing there with the welcome sign, and that was really sweet. I cried, of course.
The value of multiple opinions
I recommend getting a second, even a third opinion. You know, technically, I started with my small-town oncologist. I was sure I wasn’t going to stay here in a small town. Then I went to San Diego and got another opinion in Texas, and then went back to California, where I am now.
So, absolutely get second opinions. Get third opinions if you can. I also called a bunch of other places that I never got in with because they were so far out. So I was looking at other people calling, making other calls, because I just didn’t feel right.
I think that I would have been doing that intense chemo for months, and who knows where that would have led me. It would have knocked me down so much that I couldn’t recover and move on to the next thing. Or maybe it just would have been, yes, more chemo and months worth of that agony. And then maybe the doctor would finally have switched me to this other targeted therapy, and I could have ended up in the same place. I don’t know. But I do know that I would have wasted time.
I did call a cancer coach. And it was interesting. She gave me a lot of information. “Hey, do you want to travel to New York and get a third opinion?” And that helped me open my mind to the possibilities. Wow, I really don’t have to just do what this one doctor in a lab coat says, just because they’re the doctor. There are other options. And she was talking about all these things and possibly even getting treated in other countries. She opened my eyes to different trials and things out there that nobody was telling me about. That helped me be a little bit more courageous and open to the idea that I don’t have to just listen to this one person. “Yeah, you know, you’re doing chemo, and it seems like the tumors are shrinking.” That’s great. But you don’t have to just listen to one person.
How my diagnosis impacted my kids
That was a big question: how much should we tell them? I wanted to be open. My kids were nine and 11, and I wanted them to know what was going on. I wanted them to know why their mommy was on the couch all the time, why I didn’t feel good. And they needed to know that I needed their help.
The main thing was, yes, I missed out on a lot of time. We would try to do things around the couch, or maybe do a puzzle or watch movies. We’d try to do whatever activities we could. But it was harder missing their games and not being able to take them to school and having my husband do that instead. Just missing out on a lot.
But we did our best. And I made them into little runners. They would run and get mommy a blanket, a pillow, water, or food. They were great helpers, but I wanted to be as open and honest as the kids could understand, but not terrify them, because I was terrified that I was going to die. And so I didn’t. I said, “Mommy’s sick.” And yes, people do die from cancer, but I don’t think that’s going to be me. So they were going to think that mommy’s going to be okay, but I’m just not the same right now. And I’m going to need your help. And they stepped up.
So in a way, it’s kind of a little gift. It’s kind of good for them because they learned to be more empathetic and more sympathetic. So learning a little bit more responsibility, needing to help out more, carrying things because I couldn’t carry anything. They were carrying everything for me. So in a way, they’ve grown a little bit from this, too.
The hardest part of my diagnosis
The hardest part was the weight of getting the initial diagnosis. Stage 4 terminal cancer. What does that mean? Am I going to beat this or not? That was really low.
After going and seeing that second opinion, when they told me, “Oh, we would do the same thing,” and I hoped I’d walk away with a magic pill or something for me, but they didn’t have anything for me, and then learning that it was also in my lymph nodes, which in my mind meant that I was done because it can travel anywhere — that was a really low point. And that’s when I made goodbye videos to my kids, which was hard.
I’m glad I did, because I can look back at them and think, “Wow, I was on the verge of saying goodbye to my kids and my husband.” That was probably the lowest point — coming to terms with having to make these videos.
I had actually put on makeup and fixed up my hair so that it was a good video for them. I didn’t want them to think, “Mommy looks really sick and bad.” They were going to have those videos forever.
I told my husband, “You can remarry, but I know you’re not going to.” He responded, “I’m not getting married again. I’m glad I made it so wonderful this first round.”
So I made those videos, and I’m glad I did, because I have them, and I can look back and be like, “Wow, that was me in a really not a good place to come to that point, to say goodbye.”
How my identity has shifted after my diagnosis
My identity has changed immensely. Not only my lifestyle, but also starting with that. Like the things that I eat, I put in my body what I put on my body. I avoid processed food and eating out a lot. Cutting out alcohol, cutting down on sugars and meat.
But the biggest thing is that my outlook on life is completely different. When I was sitting there, you know, just wanting to go outside and just sit outside, and I couldn’t do that. So now, I treat every day like it’s so precious. I want to squeeze so much out of every day. I have to do this, I have to do that. What’s my to-do list? Got to go to work. Got to get the kids to school. Got to do. Gotta check off that list. Now it’s like, I get to take my kids to school. I get to go to work. I get to go to the grocery store. I get to watch a movie. I get to go outside and listen to birds and waste time.
And so my biggest realization is that you don’t know how long you’re going to be here. And people say that all the time, but it doesn’t sink in until you truly face death. And this could all be over very soon, was what was going through my mind. So when you have that, then you just really appreciate everything.
And now I’m in remission, I’m filling my calendar with all these places that I want to go, things I want to do, friends I haven’t seen. I am just filling it up with things that I really want to do. Versus, wow, why did I fill up my calendar with stuff I didn’t really want to do or waste time doing, when I could have been enjoying more time with my kids or my husband or just reading a book?
I’ve definitely gotten more in touch with myself and my emotions. My whole identity has really shifted to being grateful, taking care of my body, and helping others. Now, that’s what I want to do, pay it forward. And my outlook on life is so much better.
Reaching no evidence of disease
I had a clear first scan after my second surgery, and it showed nothing on there, which was amazing. It’s funny. I didn’t even let that enter my mind because I was just thinking, “We just want to see that the tumors are gone.” But in my mind, it didn’t add up to the possibility that I could be cancer-free. Like, I didn’t let myself get my hopes up.
I finally talked to my oncologist, and he said, “Yes, we don’t see anything, but we have to do these other bloodwork tests.” I remember I was at Sea World with my family, and I got the email, and thought, “Should I open it now? Because this could be good or bad. Okay, I think it’s going to be good. But either way, I want the information. I’m doing well, and I think it’s going to be good.”
I just looked at it and I saw the number zero, indicating no tumors. And that was the moment I thought, “Wow, I think I’m in remission.”
I had my appointment the following week, and then I was like, “Can I say I’m in remission?” And he said, “Yes.” So I knew it a little bit. And it was slow, it wasn’t like, boom, a moment you faint or like scream or something. It was definitely wonderful to hear those words out of his mouth and then to share them with everybody.
I immediately called my husband and a couple of close friends. I sent it to my girlfriend star squad, those girls who have been helping me through this and taking care of me. I let them know. And then I was like, “I’m going to put it on Instagram and tell the world, because this is great news.”
It’s still sinking in, but yeah. It’s amazing.
My support system
My husband, my kids, they’re the reason why I’m here. I fought so hard for them. I want to see my kids grow up. I want to experience all that. And it’s wonderful. I was in the mindset for a while that I’m not going to see them even drive or go to their first dance, or first kiss. And I believe that I will now.
I had my star squad, the smaller group, 12 women, in a group text. It would be like, “Okay, who’s going with Starr to this treatment?” “I’m going to drop off some food.” “Do you need any help with the kids?” Words of encouragement. And then I had two or three friends who were just there every single day. How? Constantly checking in on me. Showing up, even being there when I didn’t know I needed them.
Talking through things and just having that girlfriend connection that you need. So not only taking care of me physically and all the things that I need, but mentally, it was just to let emotions out.
What I want others to know
One of my books talks about radical remission, radical hope. This thing is amazing. It just gets into not only supplements and good food, but also all these other things that you can be doing. Nourish yourself as a whole, not just physically, but also emotionally, spiritually, and mentally. It’s your outlook. Oh my gosh, that could be half the battle right there.
I had stage four terminal cancer; I could have thought that I’m not going to make it. Not to say that I didn’t get in that mental space, of course, I did at some portions throughout this, but I’ve tried to stay as positive as possible. And I think that really, really helps.
I read in these books about people experiencing spontaneous remission. Reading about somebody who was literally put in hospice and they were expected to die in a week or two — but they don’t, and they’re still living many years later. And really, if they can do it, I can do it.
People want to hear that. People need to hear that. Just because you’re given this diagnosis doesn’t mean that you’re going to die. You can beat it. You can live a much longer life than the doctor said.
You’re your own statistic. You are your own person. You can really do a lot of things in your life, rather than just taking chemo and radiation or even just food supplements that you’re putting in your body. There’s more that you can do. And I want people to know that you can empower yourself. You can really change the odds. Those stats in my mind went from, “Oh, you have a 15% chance to live to 85 or 90, to: I expect to be here in five years.”
I really have the mindset and the changes that I made. I want people to know that it’s not a death sentence. People are getting cancer younger and younger. Even though you’re young and you think you’re healthy. And that’s what I thought I was. I drank the green drinks. I went, I exercised. I kept my body weight down. And I thought I was healthy, and wow.
Cancer made me really look at my life and realize that I had a lot of imbalances. And I thought, “Maybe I should address those. This is cancer; it is my wake-up call. Let’s not focus on the fact that I have cancer. Why did I get cancer in the first place? What are the things that I can change in my life? To not only beat the cancer. My goal now is to stay in remission, to not let it come back.” And so I need to really nourish my body in multiple ways.
At first, it was uncomfortable. I am a survivor, I am a warrior, and I am a thriver. And I’m proud of that because I’ve been through a lot. What’s scary about it is that at my next scan in three months, I could have cancer back. You know, it can come back at any point. I really do believe that I’m going to be okay. But there is that chance that it’s going to come back and that I will need to continue this battle. But survivorship to me is just a wonderful feeling. And I hope that other people take some hope from this, that this can be you, too. You can do it. And you can be a survivor, a thriver, and a warrior too.
And in the meantime, whether you have cancer or not, just live your life.
Emily Breaks Stigmas and Builds Awareness Around Stage 4 EGFR+ Lung Cancer
Emily never imagined that a lingering cough would lead to a diagnosis of stage 4 EGFR+ lung cancer in September 2024. As someone who is active and outdoorsy, she initially chalked her symptoms up to Austin’s notorious allergy season. But when she struggled to breathe during a familiar hike and noticed her voice changing, she knew something was off. Even then, cancer wasn’t on her radar until scans confirmed the diagnosis.
At first, Emily felt overwhelmed, thinking her life expectancy had suddenly been cut short. However, her oncologist reassured her that while stage 4 EGFR+ lung cancer is incurable, it’s treatable and treatments have come a long way. That perspective helped her move from despair to action. Emily chose both chemotherapy and targeted therapy, later adding radiation, and now she’s stable with minimal side effects. She enjoys being active again and even swims with her neighborhood team.
Throughout her experience, Emily has leaned heavily on her friends, family, and wider community. From organizing rides to appointments to surprising her with a fully cleaned and organized house, her circle showed up in ways she never expected. She emphasizes that asking for help is not a weakness; it’s a gift that allows others to love and support you.
Emily also became vocal about advocacy, especially within the Asian community, where awareness about stage 4 EGFR+ lung cancer is still limited. She shares her story and reminds others not to dismiss persistent coughs or shortness of breath. She hopes that by speaking up, more people will push for answers earlier and potentially catch cancer sooner.
Another pillar of her healing has been focusing on mental health. Emily admits that when treatment began, she was too overwhelmed to join support groups, but therapy later helped her process the uncertainty of living with advanced cancer. Practicing mindfulness and giving herself grace has been essential. She’s learning to appreciate everyday moments, like petting her dogs, spending time with her kids, and cherishing the present, without constantly worrying about the future.
Stage 4 EGFR+ lung cancer does not mean life is over. With evolving treatments and community support, it’s possible to live fully and meaningfully. Emily’s story reminds us that resilience often looks like honesty, vulnerability, and the courage to ask for help.
Hear directly from Emily in her video or keep scrolling to read the full interview:
How a “simple cough” turned into a diagnosis of stage 4 EGFR+ lung cancer
The powerful ways Emily’s friends and family rallied around her
Why Emily is raising awareness about lung cancer, specifically within the Asian community
How therapy, mindfulness, and giving herself grace helped Emily find peace
The hopeful perspective her oncologist shared that changed everything
Name: Emily N.
Age of Diagnosis:
46
Diagnosis:
Non-Small Cell Lung Cancer (NSCLC)
Staging:
Stage 4
Mutation:
EGFR
Symptoms:
Chronic cough
Persistent post-nasal drip
Shortness of breath while doing simple activities
Changes in voice
Rib pain
Treatments:
Chemotherapy
Targeted therapy: tyrosine kinase inhibitor (TKI)
Radiation therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I live in Austin, Texas, and I was diagnosed with stage 4 lung cancer with an EGFR mutation in September 2024.
I would say that I’m an ambivert, a little bit quirky, and pretty dorky. I love nature and animals. I try to love my plants, but they don’t always love me back. I love to read, swim, and trail run. I have a very large support network that I have been very blessed with.
When I first felt something was wrong
In the fall of 2023, I started developing a cough, which I didn’t think much of. I live in Austin. The allergies are insane. They’re tough, so I didn’t think much of it.
When the cough persisted into early 2024 again, I didn’t think much of it because now we’re into cedar season. There was always something on top of it. I’m pretty active and healthy, so I never considered that anything was wrong.
Around May 2024, I went to a doctor because I could feel that I had a persistent post-nasal drip, which he confirmed. I mentioned a cough, but he didn’t seem too concerned about it. He prescribed some nasal sprays and sent me on my way.
It was on August 31st when I realized that something was wrong. I went for a hike with my partner and it was hot. But as we were finishing the hike, which had a decent uphill grade, I couldn’t breathe. I was doubled over and couldn’t catch my breath. This is a hike I’ve done many times, so I was a little bit surprised, as was he. I chalked it up to the heat.
But by then, my voice had already started to change. I had no projection in my voice. It was scratchy. Sometimes it would get high-pitched; other times, it would get a little deeper. I didn’t think much of it because I thought it was because I was coughing a lot.
But when I realized I was having some difficulty breathing on a hike that I did all the time, it became my first red flag. Then I started noticing little things like getting winded going up stairs or doing a trail run and having trouble breathing. That’s when I freaked out and realized I needed to see a doctor about this.
The moment everything changed
When I went to a new primary care provider (PCP), I thought she was going to say I have asthma or bronchitis. Never in the realm of possibility did I think I was going to have lung cancer. But she took everything very seriously. She sent me to get a chest X-ray, referred me to an ENT, and ordered blood tests.
I got a chest X-ray that same week and then she called me on the day I was supposed to go with my best friends on a girls’ trip to celebrate a birthday. She said that there were concerns with my chest X-ray. There were nodules and she wanted me to get a CT scan when I returned. She mentioned the possibility of cancer, but she said it also could be nothing. So when my best friend walked in the door to pick me up to go to the airport, the first words out of my mouth were, “I might have cancer,” and we started freaking out. This is a great start to a girls’ trip.
When I got back, I got my CT scan done on a Friday and the physician assistant (PA) called me that Sunday, and it’s never good news when your PA calls on a weekend. I was out and almost didn’t pick up the call because I didn’t know who it was, but I’m glad I did.
She introduced herself and I asked, “Do I need to sit down?” She said yes. She explained that the nodules were cancerous. I had a bajillion questions and rightfully, she said, “I’m not an oncologist. I can’t talk about staging.” She did give me her personal cell phone number for support and then said, “I’m referring you out to Texas Oncology.”
At that time, I hadn’t told anybody other than my two best friends with whom I went on the girls’ trip. I called my sister on my way home, went straight to another best friend’s house, and banged on her door and said, “Let me in. I need you.” We held each other and sobbed. That was a rough day.
The cancer spread
That same best friend took me to my appointment and my oncologist explained that this was stage 4. It metastasized to other parts of my body. I found out later exactly where it all went. There were quite a few places.
One thing she indicated was that I had a spot on my eighth rib bone on my right side, which explained why, over the summer, I apparently had fractured it and had no idea. I thought it was an intercostal rib strain. I would have no reason to think I would have fractured a rib, but she explained why I was in so much pain there.
I went into the appointment saying, “How can I have lung cancer? I’m a nonsmoker. I’m 45 years old. I’m active. I’m healthy.” She explained that I perfectly fit the demographic of EGFR lung cancer. At that point, it was the end of September. I still hadn’t had any biopsies, so she had me admitted to the hospital. I was there for about five days for a bunch of tests. They did a lung biopsy, checked out my pancreas, and did another MRI. That week was a blur.
My oncologist is very well regarded within the community here. Every time I mention her name, other patients would say she’s the best. Other medical professionals I went to also say she’s the best. At one point, she explained that she was considering working at MD Anderson and decided not to. My other thought was to go to MD Anderson, but that would have been logistically very difficult. I completely trusted her judgment and my case seemed like an open-and-shut case.
How I educated myself about my diagnosis
I knew absolutely nothing because in my head, lung cancer was for smokers. When she mentioned that, of course, I started Googling everything I could about EGFR. It came down to the question: Why me? What could I have done differently? It just came down to bad luck. Had I known that a chronic cough was a symptom, I would have gone to the doctor immediately. That’s when I started speaking about this type of lung cancer because I got a sense that it wasn’t well-known, especially in the Asian community.
At the time, I didn’t join any support groups. I thought it would be too overwhelming because initially, it was all too much. A lot of the information, especially before my first appointment with my oncologist, was very grim. There was a two-week period when I had no idea what to do. I just knew I had stage 4 cancer.
At the time, my boys were 12 and 14. I wanted to be as open and honest with my kids as possible. I didn’t want to hide anything from them, so I was very real and honest. I said, “This is scary. I don’t know what’s going to happen. The worst thing that could happen is something bad happening to you guys. The second worst thing is me leaving you too soon.”
I was worried that I wouldn’t see my youngest son graduate from high school. They’re still babies. They’re not full-fledged adults. I wasn’t ready to leave them. I needed to process all the fears and worries by myself. I thought that if I joined a support group, I would spiral deeper.
For my kids, we had them go to Wonders & Worries in Austin. They went through a six-week program, which I think was helpful for them. Once I got through my hospital stay, process, and understood that this wasn’t necessarily a death sentence and it was treatable, my mindset changed. I didn’t need therapy at that time because I needed to survive. I needed to process everything. I’m in therapy now, but at that time, I was in my head too much to even talk about it over and over again.
It was absolutely sobering. My immediate reaction was I’m screwed. I’m dead in a few years. Of course, this was before my oncologist said anything. I thought, “This is it for me.” It’s probably the scariest news someone can get about their health, especially having no idea that you were sick to begin with.
The primary was my left lung. I had innumerable small nodules in my right lung. It had also spread to the rib, sacrum, and pancreas, and I also had a tiny spot on my brain.
I was given options for treatment
She mentioned targeted therapy and a particular drug that worked very well with this type of cancer. However, it’s a little bit slow-acting. She mentioned that if I wanted to be more aggressive, I could do chemotherapy. We discussed the pros and cons of both treatment options. I want to fight this as hard as I can, so I decided to take the aggressive approach and start chemotherapy, which was in November. She agreed with it. She let me drive that discussion and the decision. Afterward, she said, “That’s what I would have chosen for you as well.”
I started the targeted therapy drug and chemotherapy on the same day. I had four rounds of chemo between November 2024 and January 2025. After my PET scan in January, I received good news — she told me I wouldn’t need chemo anymore.
I went back to work and that same week, I received word that after discussing with a radiation oncologist, the two of them decided that it would be beneficial for me to also do a couple of rounds of radiation.
What life is like on targeted therapy
This particular drug that I’m on, I need to take at the same time every day. I take it between 10:00 and 10:30 every morning. I have been very lucky that I haven’t had a lot of side effects with the drug itself. I definitely felt them with chemo. The drug itself has been fine. I don’t feel much of a difference. I feel great right now. I wake up, hang out, take my drug, and go about my day. No major side effects.
The big side effect I had was joint pain. I felt it mostly in my fingers and knees, and occasionally on my hips. It varied from time to time, but mostly my knees and my fingers, which I also wondered about. Coupled with perimenopause, it was a double whammy. I talked to my oncologist about it and she recommended that I go on a supplement. Ever since then, I’ve felt great.
How I feel about being on treatment indefinitely
My oncologist said she would be open to clinical trials for me. It would just have to be the right one. We haven’t discussed it since then, which tells me she has not seen the right one come through. She would want something that has gone through a round or two before getting me in because she does not want me to be one of the first-round folks, which I appreciate.
Part of why I’m in therapy now is that the closer I got to feeling better, the more anxious I became. I’m stage 4 and I know that I’m on this drug until it stops working. Being stage 4, I expect it to come back. I’m in a very good place right now. I’m as healthy as I can be. But it will come back. It’s just a matter of time. Waiting for the other shoe to drop brought me so much anxiety.
I feel great right now. How long am I going to feel great before it creeps up again or before the drug stops working? Is it five years? Two years? 20 years? Having that loom over my head is what was so unnerving. I keep practicing mindfulness in that regard. I talk to my therapist about it and try to stay in the moment. I also tell myself every single day that tomorrow is not guaranteed for anybody, regardless of how healthy they are.
My life will never be the same again
My fitness level completely decreased, especially while going through chemotherapy and radiation. Fall is a great time in Austin to be outside, hiking, and enjoying the weather, and I couldn’t do any of that. I couldn’t trail run anymore. I was told not to hike. I was told to walk around my neighborhood, but walking on sidewalks is not as fun as walking on dirt for me, so that took a hit in terms of my physical and mental well-being.
Once the weather started getting warmer, I also found that I couldn’t be back in the pool immediately. Any sort of exercise was basically gone, other than a nice, leisurely walk, which, for someone who is a pseudo-athlete, is very difficult. Constantly going places, whether it’s the grocery store, felt like the COVID pandemic again, where I had to make sure that I did not get any illness whatsoever from anybody. Even my friends would say, “I’m not feeling well. I need to cancel plans with you.” It’s fine and I thank them, but not having the lung capacity to do basic happy things was tough.
I went through life imagining this beautiful future, growing old with my partner, and becoming a grandma, hopefully. I had to come to grips with the idea that I could get in a car crash the next day, but what I had planned for my future may not happen. I have come to accept that if I get to be 65 years old, I will be lucky. I will be lucky if I live long enough to become a grandmother because that’s all I want right now. I want to get promoted to grandma.
Before, it felt automatic that I’d be here until my kids grow old and then I’m going to help take care of their kids. I get to love my future grandchildren. I realize that may not happen for me, so I appreciate what I have now, as cheesy as it sounds, and enjoy the moment. I appreciate every single day for what it is.
I have been through other hardships recently, but being able to travel and see old friends is a blessing, even if the reason isn’t great. Being able to pet my dogs and waking up in bed are simple things that I’m still able to do. On the flip side, life is too short to put up with a bunch of crap. It’s also important to know when to say you’re not going to deal with certain things or not live in that space and let things go.
I was able to go back to work for a few months. I was laid off recently, so that’s one of the hardships I mentioned. But being on the drug has improved my life so much. I’m back in the pool. We even have a neighborhood swim team and that’s been fun. I look forward to our weekly swim practices and hanging out with the team.
When it’s not a thousand degrees here, I will go back to the trails and do some trail running. I have a sense of normalcy now and it feels different than taking the drug every day. My life feels like it was before I got diagnosed.
Those who were closest to me, my inner circles, were aware. After diagnosis, I told my immediate family, my best friends, and two other close friends, and that was it. Then it became a need-to-know basis. If I went to a party and someone asked why I was losing my voice, if it was someone I knew well enough, I would tell them.
My story slowly came out, but I didn’t go public with it until around March. I realized that I fit the demographic. Had I known that my cough was an indicator of cancer, I would have gone to the doctor immediately and said, “Tell me about lung cancer. I think I’m at risk of this. Please run all the tests.” I would have advocated for myself.
I figured there are plenty of other people like me, so that’s when I started talking about it at work. I posted about it to our Asian network and our women’s network. I posted about it on our neighborhood Facebook page. It was not just the Asian community specifically. My non-Asian friends might know somebody. I’m trying to get the word out there that this was a surprise.
The more I looked into it, the more I realized there are so many people like me who get diagnosed at a late stage because they had no idea. I slowly started putting myself out there. I joined that Facebook group to hopefully have that support system. Now, I feel better, but I’m also reaching out to as many places as possible. Over the course of a few months, I had 4 or 5 people say they had a cough or knew someone who had a cough, and someone else was diagnosed. If you have a cough, go and make that appointment.
I’m so grateful for my support system
If there’s one thing my friends know about me, it’s that I’m not shy about asking for help. My best friend Jenny created a Facebook group for me so we could keep friends and family updated in terms of my appointments, test results, etc. “I’ve got an appointment on this day. Who can take me?” “I’m coming back from chemo. Who wants to bring me food?” I’ve had no shortage of help in that regard. It was one of the greatest gifts I had during that time.
Before I started treatment, my sister took me on a vacation because I needed it. But while I was gone, one of my best friends got an army together to help clean my house. I had previously told her, “Oh, man. My parents are coming in with a one-way ticket. The one thing I’m not looking forward to is cleaning the guest room, organizing it, and organizing the garage.” I, like many people, use the guest room as a storage space. She jumped on it and said, “Oh, absolutely, I will do that for you.”
She did it while I was gone and not only that, she enlisted the help of so many other friends and they did the entire house. When I came back, I thought she was only doing the two spaces. A big group of friends, my partner, my ex-husband, and the kids all contributed to this huge gift, which she still claims is not that big of a deal. It’s a big deal to me.
What I want others to know
My oncologist told me at my first appointment that stage 4, especially with EGFR-positive lung cancer, is not an absolute death sentence. She told me repeatedly that it is incurable, but it is treatable. I do feel like I’m living proof of that. I did not expect to be in such a good place in such a short time. I thought I would still be struggling with this diagnosis, even with my treatments. I was diagnosed in September and here we are, less than a year later, and I’m basically in remission.
It’s a tough pill to swallow, but there’s hope. I was also told repeatedly that lung cancer research is always evolving. It’s a great time right now. We just need to make it to the next breakthrough. Even the drug that I’m on now didn’t exist years ago. Keep making it to the next one.
As cheesy as it sounds, try to stay positive because that mindset is everything. Could we lie in bed and cry, and feel sorry for ourselves? Absolutely. But that doesn’t help the body or the mind. Try to stay positive, enjoy the life we have now, and know that there’s still hope for a life post-diagnosis.
My life expectancy is much shorter. I thought I was only in my midlife at this point. I’m turning 47 soon. I envisioned life until I was 80-something. It undoubtedly will be cut short, but that’s okay because when I think about perspective, hopefully I can see my kids into adulthood, which not everybody can. I can enjoy the life that I have now as much as possible.
Asking for help is not a weakness. People want to do things on their own. They think they can manage or don’t want to bother family and friends. They don’t want to bother people by asking for help. What I’ve learned is your people, your tribe, want to help you. They want to be there for you in times of crisis. Why else would they be your friends? Don’t be afraid to ask for help and support.
How Faith and Family Keep Jackson Going Amid Stage 4 Colon Cancer
When Jackson was diagnosed with stage 4 colon cancer with BRAF mutation at 27 years old, life flipped upside down in ways he never saw coming. A former college athlete, outdoorsman, Brazilian jiu-jitsu practitioner, and self-proclaimed extrovert, Jackson was the last person anyone expected to face a stage 4 cancer diagnosis. But looking back, the signs were there. He just didn’t realize how serious they were.
Jackson had been experiencing stomach issues and hemorrhoids for years, so even when he noticed thinning stool and blood, he brushed it off. That changed quickly when severe stomach pain and projectile vomiting landed him in the emergency room. Scans revealed a tumor in his colon and more than 40 tumors in his liver. Later, genetic testing confirmed that he had a rare BRAF mutation, present in only about 8% of colorectal cancer patients.
Understandably, the news hit hard. Jackson recalls the mental toll in those first few weeks, including the panic attacks, the anxiety, and the numbness. But what changed everything was a spiritual experience after reading Matthew 6:34 with his wife during a moment of deep fear and uncertainty. He describes feeling what he could only call a divine embrace, a peace that replaced panic, and a clarity that gave him purpose.
That spiritual moment became a turning point. Jackson began embracing each day without obsessing over the future. His mental health improved, his faith deepened, and his perspective on life transformed. He’s started a weekly Bible study, watched close friends get baptized, and even launched The 3929 Foundation to raise awareness, fund research, and provide financial assistance for those impacted by cancer.
While stage 4 colon cancer with BRAF mutation is a daunting diagnosis, Jackson hasn’t let it define him. He continues to work full-time, train, fish, and golf. He’s even recovered from colostomy reversal surgery and is eyeing a return to jiu-jitsu. Although he’s undergone intensive chemotherapy and faces ongoing tumors, including recent ones found on his peritoneal wall, he remains hopeful. His oncologists are amazed at his positive response to treatment, with nearly 90% of liver tumors now undetectable.
Through it all, Jackson advocates for others to listen to their bodies, get multiple medical opinions, and not hesitate to push for testing. He credits his wife, family, and faith for keeping him grounded. He’s not just surviving. He’s living fully, with a mission to educate, uplift, and inspire.
Watch Jackson’s video or read the transcript of his interview to find out more about his story:
Why Jackson says being diagnosed with stage 4 colon cancer with BRAF mutation may have been the wake-up call he didn’t know he needed
The emotional moment at his kitchen table that reshaped his entire outlook on life
How his wife, family, and friends became his loudest advocates, and why that made all the difference
The surprising reason he’s grateful to be the one facing cancer, not someone he loves
What changed after Jackson focused on today instead of fearing tomorrow, including the Bible verse that grounded him
Name: Jackson L.
Age at Diagnosis:
27
Diagnosis:
Colon Cancer
Staging:
Stage 4
Mutation:
BRAF
Symptoms:
Severe stomach pain
Fatigue
Lack of motivation
Anemia
Blood in stool
Thinning stool
Treatments:
Surgeries: emergency bowel obstruction surgery with temporary colostomy (to discuss the possibility of HIPEC in 2026)
Chemotherapy
Immunotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I’m from Kansas City. I got diagnosed on January 11, 2025, at the age of 27.
I’m a big outdoors person, so I do a lot of hunting, fishing, and farm work at my farm. I love spending time with my wife. I’m also a purple belt and trained in Brazilian jiu-jitsu, so that’s something that I’m very passionate about as well. I love spending time with my family and our three animals.
My friends would describe me as very outgoing, talkative, and energetic. Hopefully, they’d say I’m selfless. I like to do things for other people.
When I first knew something was wrong
I ignored a lot of them as they came through. I’ve always had stomach issues for a very long time, all the way back to high school and through college. I was always told that it was acid reflux or GERD (gastroesophageal reflux disease), or that I’ve got IBS (irritable bowel syndrome) or something like that.
Over the course of 2024, I started to see my stool thinning and had blood in it, but I didn’t realize it at the time. I’ve always dealt with hemorrhoids for a long time, so I thought it was just that.
The crazy thing is that my sister is an oncology nurse, so I would talk to her about it, ask her, and send her pictures to know if that was okay. She didn’t think anything of it either because I was healthy, a college athlete, and ate right. We thought it was something with my stomach.
Then I started feeling very fatigued and lethargic throughout the year. I didn’t feel motivated to go to the gym when I used to go every single morning and train in jiu-jitsu at night. That started fading away a little bit.
I would say that would probably be the anemia, which I didn’t realize at the time. I was very pale and even when I would go to the lake every week with my parents and out in the sun, I still was not getting a tan or any color. When I had to go to the hospital, I was starting to get tired all the time and grumpy. I was starting to notice the blood in my stool and that’s when I started freaking out a little bit.
At about that time, within a week, I was in the hospital from extreme stomach pain and I was projectile vomiting. They told me I needed to get a scan and go to the ER, and that’s when they told me they saw what they thought was a tumor. I officially got diagnosed the day after that, when I got transferred to the University of Kansas Hospital.
We thought it was appendicitis or some infection. Never in a million years would I have thought it was stage 4 colon cancer. What was wild is that he walked out and said, “There’s a big tumor in your colon, and we found spots all over your liver.” When I officially got diagnosed at KU, they told me that I had stage 4 colon cancer. I had a complete bowel blockage, so I couldn’t go to the bathroom and had to get emergency surgery. They stopped counting after finding 40 tumors on my liver.
I wanted a second opinion
In March 2025, I got a second opinion at MD Anderson. I also have a rare mutation, the BRAF mutation, which is only in about 8% of colon cancer patients. I asked my oncologist and he said, “We’ll never be able to tell you how long you’ve had this or when you got it.” The interesting thing is, when I went to MD Anderson, I asked the oncologist there, and he and his team said that they would be shocked if I had it longer than a year.
They told me that in their opinion, they thought that it turned on and spread like wildfire within a year, which honestly would make sense to me because I started getting those symptoms, the fatigue and the actual blood in stool, within that year, so it would make sense to me that I’ve maybe only had it a year. But I thought that it couldn’t be out of the realm of possibility, with all the stomach issues I’ve had, that maybe I’ve had it for five to 10 years and then it slowly grew.
Education is probably one of the most important things. I feel like it’s one of my callings and the reason I’m going through this is to help bring awareness and raise awareness about the signs and symptoms of colon cancer. One of the most rewarding things that has happened is that since I got diagnosed was I probably have had over 50 people who I either know or who I have never met in my life from across the country reach out to me and told me that because of my story and everything that I’ve shared, they’ve gotten checked out and have gotten colonoscopies or gotten them scheduled or gotten tests.
There was a kid a few years younger than me who I knew from high school, and he messaged me and said, “I know you don’t know me too well. I was younger than you on the baseball team, but because of your story, I was able to get a colonoscopy set up. I’ve had stomach issues forever. Luckily, nothing came back from it.” I’ve had dozens and dozens of people tell me that and share that with me, which is literally the most important thing to me. That’s why I started this foundation, partially to help people with financial assistance who are going through cancer and everything, but the main reason is to help raise awareness and provide resources for people to get education about it because it’s not talked about enough.
Now it’s going to be the number one cause of death and cancer in people under 50 in men and women, behind breast cancer, and it’s never talked about. You see more younger people getting diagnosed with it and at a late stage, and nobody can tell us why. That’s the biggest thing for me. Part of our mission is to help get people connected with educational resources and actual care teams willing and able to help provide that.
When I got the news “you have cancer”
It still feels like it was yesterday. I was sitting in the emergency room with a screen in front of me and it was in the middle of one of the biggest snowstorms we’ve had in Kansas. My wife was at home. My parents’ house was not too far from the hospital I was at, so they drove to meet me there. When he told me, I sat there and didn’t know what to say or how to respond, to be honest. I sat with a blank stare on my face.
Then I called my wife and she started freaking out. She drove to the hospital and stayed the night before I got transferred. I felt super sick to my stomach. I didn’t know how to process it. My mom had breast cancer when I was very young. She’s 17 years clear, so she’s been doing great, but she felt just as sick, knowing that she has to watch me go through this now after she had to.
At that time, I was numb. Then, when I got the surgery and was recovering, I was trying to be optimistic and not be mad at the world. But then I started having a lot of panic attacks and anxiety attacks. Through my faith and the people I have, I’ve been able to overcome that. I’m probably too optimistic at this point, when I was told I got two years to live. A lot of people tell me they would have never guessed, with my energy levels and how I act and respond, that I was diagnosed with stage 4 colon cancer. But that’s a compliment because that’s how I want to live. I know people who are in the situation that are mad at the world and pessimistic and whatnot, and that’s not how I want to live.
My sister was working on the oncology floor of the University of Kansas Hospital. She worked there for three years. At the time, she was working at Mass General Hospital because her boyfriend and my future brother-in-law was a resident doctor at Mass General. Now they’re in New York City and both working at Mount Sinai. She’s working as a clinical research coordinator in oncology, and he’s a cardiology fellow. At the time, she was not, but a lot of her friends and connections were still there, and I’m very lucky because of that.
Her boyfriend had a friend who was working in the emergency room that day and was able to pull some strings and usher me back pretty quickly. By the time I got back, I had two doctors waiting for me, which never happens. They did some tests and were talking about doing scans. They immediately took me up to that cancer unit, and I was treated with the best care I could have ever asked for.
I’m still close with all those nurses up there. I keep in touch with them all the time. I just had my colostomy reversal surgery two weeks ago and I was getting wheeled up there to hang out with them and talk to them because I care about them deeply and they are amazing people. They are the best nurses in the world, in my opinion. They’re incredible.
I first went to urgent care and by the time I went, I was projectile vomiting and they said, “You need to go to the hospital,” so I had to drive myself while throwing up to the closest hospital and went to the emergency room. They did some blood tests and took me back for a CT scan. A couple of hours later, they told me they found what they believed were tumors but didn’t give me an official diagnosis.
I stayed overnight at that hospital. Their oncologist came down and told me that she believed that I had stage 4 colon cancer. At that point, there’s no other hospital. There’s only one option for me and that’s going to KU. They’re the best around here for that and one of the best in the country.
I had surgery right after I was diagnosed
My sister made calls and I had to discharge myself because they wouldn’t approve a transfer. My mom had to drive me over to KU and into the emergency room. I got admitted through there. That would have been on the 10th and the very next day, on the 11th, they officially diagnosed me. On Sunday, the 12th, that’s when they did surgery to remove the tumors and put in a temporary colostomy bag.
The plan moving forward
Recovery was not fun. On top of that, learning how to deal with a colostomy bag was a big challenge. Luckily, I have a brother who lives here and another brother who lives in Scottsdale, so he flew into town. My sister at Mass General, they gave her all the time off and said, “Go be with your brother,” so she flew in. She was like my second nurse. Her boyfriend was with me too. I was recovering for about a week and they said, “We typically don’t do this, but you need to start on chemotherapy as soon as possible.”
I started chemo three weeks post-op and finished my first round on my 28th birthday. I got discharged from the hospital a week after surgery. I believe a week or two after that was when I met my original oncologist. I’ve since switched to a new oncologist. I was thinking that they’ll say, “We’ve got a great chemo regimen. We’ll be able to get you past this. You’ll be good.” My oncologist looked me in the eye and told me that he doesn’t think I’ll live past two years. He straight up said, “You’d be lucky to live past two years with your mutation and how advanced your disease is.” Nope, I’m not accepting that.
I was with that oncologist for a little bit. I got a second opinion at MD Anderson. Unfortunately, they kind of told me the same thing. The only option for me was a BRAF-specific regimen and your only hope at living past three years. That hurt a little bit, as well as all the negativity around me. Everybody was telling me that I’ll be dead in two years and if I can live past that, I’ll be lucky.
But with this chemo regimen, doing a holistic approach of changing the way I eat, what I’m putting into my body, other supplements, and different types of alternative medicine, my oncologist estimated that about 90% of the disease on my liver is gone. With having more than 40 tumors originally, he’s mind-blown that I’ve had this good of a response to all the treatments and everything I’m doing so far.
Unfortunately, after the colostomy reversal, they found more tumors in my peritoneal wall. The response that I’ve been having to treatments and everything I’m doing has been very good so far. I continue to be optimistic about what I’m doing and think that eventually, I can get to no evidence of disease, against all odds that I’ve been given.
I changed my diet
When I talk to my colorectal surgeon and my new oncologist at KU, who’s incredible, I’ve asked multiple times, “Why are we getting this? Why are so many people getting colon cancer so advanced at such a young age?” He said, “We don’t know yet, but in my opinion and through a lot of research, it has to be environmentally-related to either the stuff that’s in our food supply,” like the chemicals that are getting sprayed, microplastics, all the additives and preservatives, or at least they think they could be a big factor into why so many young people are getting colon cancer, and it makes a lot of sense.
Ever since we’ve been kids, everything we’ve been eating has been pumped full of crap. They used to, at fast food restaurants, cook everything in beef tallow and now it’s all these different oils and other crap. The amount of stuff that is in our food is killing us and is being so harmful. My wife and I, as soon as I got home from the hospital, threw everything out of our pantry. We only order from Thrive Marketplace. We go to Sprouts and Whole Foods. We try to do everything organic. We started a garden at our house. Our neighbors have chickens and they give us their eggs. We try to do our best to know where our food is coming from and not get stuff that’s overly processed or has a bunch of stuff added to it. We’ve changed the way we eat for the most part. My wife falls off a little bit sometimes as she can’t help herself, but I’m very conscious now about what I put into my body.
I try to avoid a lot of gluten to reduce inflammation to fight against cancer. I take a lot of supplements, like B vitamin complex, vitamin C, vitamin E, milk thistle, turmeric, probiotics, and others. I’m trying to help my body fight this and I think a lot of it is contributing, outside of the chemotherapy and also helping me feel better from my chemo.
I urge everybody, whether you’re going through cancer or not, to change how you eat. Get all that crap out and fix it. That’s another goal of mine, too, which is to try to help people eat a lot better as well.
Getting multiple opinions is by far the best thing you can do. We’re still looking at options. We’ve got a friend who gets treated at Duke, and they do a lot of things with a HAI (hepatic artery infusion) pump for the liver. One of the best surgeons in the country is either at Mount Sinai or MSK who does HIPEC. In City of Hope and the Williams Cancer Institute in California, there are a bunch of places we look at to get opinions from because everybody has a different approach to how they do it, whether it’s traditional chemotherapy, repurposed medicine, alternative medicine, or whatever it is.
I’m open to anything to save my life and to get this out of my body. I’m not going to settle for what one person thinks. What’s great is that my new oncologist says, “I want you to get opinions from other places. If you need help getting those set up, let me know.” He’s not the type of person who says whatever he says goes. He wants me to get as many opinions as possible. If we can do it and they want to suggest something else, he says, “I’ll communicate with them and if we can do it here, I would love to. If not, get it done there.”
I’m glad I made the switch to him. He’s incredible. A lot of people don’t want to step on their doctor’s toes when in reality, it does not matter. It’s your health and your life. Do what you need to do. Do not settle for one person’s opinion. You have to see multiple people and get opinions from as many people as possible and find out different approaches as possible to see what may work and what may not. There are so many different treatment options outside of what your local or primary oncologist has or says.
My wife is the best advocate for that because sometimes I’m too scared because I don’t want to be mean or say something that I think is rude, my wife will say, “Why are you doing that? We should go look at that.” I tell her, “Thank you. I didn’t want to say it, so thank you.” She’s incredible at it. She’s not afraid to say what’s on her mind and to make sure that I’m getting the care I need.
I completed chemotherapy before my colostomy reversal. I was supposed to have another round, but one of the side effects of the regimen for my drug is a very bad skin rash on pretty much my entire body. It looks like I have painful acne, which it is. It has gotten so bad to the point where they couldn’t give me chemo because I had to see a dermatologist. Hopefully, I’ll get back on it, which will be my 16th round of chemo. For now, we keep doing it until it stops working. It depends on how long it can be effective for and then, eventually, we’ll look at other treatments. But so far, this chemo and everything I’ve been doing have been working out pretty well, so we’re not going to change course until it’s time.
With my chemo regimen, I was on a drug, oxaliplatin, Vectibix (panitumumab), and 5-FU, and then I take oral chemotherapy, so four different chemos. I take Braftovi (encorafenib) every single day, four pills of those. I am now off of oxaliplatin because it’s so toxic and has given me almost permanent neuropathy in my hands and feet, so I had to stop that after 10 rounds because it got so bad. Now I just do oral chemo every single day. Every 14 days, I go in for my immunotherapy infusion, which I get through my port, and then I get my 5-FU pump that I’ll have for 46 hours. I’ll usually go in every other Tuesday, get chemo, and then have my pump until Thursday, and then get unhooked on Thursday.
Every day, I take four pills in the morning for my oral chemo. Every 14 days, I was getting three hours’ worth of infusions. Now it’s just one and a 46-hour pump.
I take like 25 pills a day, which is wild. It looks like I have an 80-year-old man living with me with my weekly pills on the counter.
At first, I didn’t have time to think about it because I had so much going on with recovery and trying to figure out if we could find out about this disease and how to treat it, types of treatments, where to go, what to look for, etc.
How my diagnosis has impacted me mentally
After I got diagnosed, the first month or two were very rough on me mentally. But since then, I’ve been doing well, mentally and physically.
The chemo is not as harsh on me anymore now that I don’t take oxaliplatin, which is good. I go to work in the office every single day. My company has been great about giving me time off whenever I need it, but I’ve worked full-time through everything. I’ve been blessed with the company that I work for. They give me a lot of grace and a lot of opportunity to go to my appointments and chemotherapy, and to take days off if I’m not feeling well. Most times, I’m in the chemotherapy chair working, in meetings and stuff like that. I’ve never stopped working. I’ve been working the entire time, which has helped me a lot mentally to try to stay as normal as possible.
The colostomy bag reversal has helped me a lot in terms of my quality of life moving forward, which is great. Outside of neuropathy, I work out and I’m able to still hunt and do the things that I love to do. Without the bag now, I’m optimistic that I can get back to Brazilian jiu-jitsu training, which is one of my favorite things to do in life and helps me a lot mentally. It’s a big release for me. I’ve been able to golf through all of it. It hasn’t been too much of a difficult change besides what I’m allowed to eat or not eat. I don’t drink alcohol anymore, so that’s a big change. I feel a lot better not drinking, so that’s a good change for me.
The worst is sitting at home. The last two weeks, while recovering from surgery, I would ask my wife to go drive me around the neighborhood because I needed to get out of the house. I hate sitting at home and doing nothing for all hours of the day. She, on the other hand, can do that every single day. I can’t. I have to be up and talking to people, going and doing stuff. I still have staples in me, but I’ve been going to work, seeing people, and going to meetings. I try to live as normally as I can without any change as much as possible.
I had my colostomy bag removed
The bag reversal went well. Funny story, I was without pain meds after surgery for about 18 hours because they misplaced an epidural in me, so that wasn’t fun. But other than that, the recovery has been good so far. I’m up and moving around. I’m getting the staples out and I have a three-week follow-up, so it’s been great. I’m very blessed to be in this position to at least have this surgery.
All my cancer markers are still looking good, even with a break from chemo and having the surgery. I’m in a pretty good spot right now. I’m excited to get back on chemo and keep hacking away at the tumors. But as far as the reversal and everything, it’s gone very well so far.
They weren’t able to see the tumors and the peritoneal wall is very hard to see on scans. They could see something before, but we couldn’t tell if they were tumors or if it was scar tissue from my colostomy bag and the initial surgery. Unfortunately, when my doctor opened me up, he found four tumors right there, so he ended up taking four of them out, biopsying a couple, and then sending some off. He said those were definitely cancer. There could be more or there may not be. We don’t know how many are left in there.
The goal is to see on some PET scans coming up in September what we can try to find and the plan of attack is to continue what I’ve been doing as far as chemo and then look at HIPEC surgery potentially in 2026 to try to get all those out if we possibly can and continue to target the liver. My oncologist believed that with my scans from July that about 90% of my disease on my liver is either gone or dormant right now. My latest Signatera test came back as negative, so that’s good, meaning they’re stable and not active and spreading, so I’m very lucky for that.
The hardest part of my journey
The hardest moment was definitely the tail end of my hospital stay and then the first week at home, which is when it started hitting me that my life was changed forever. I was in a bad headspace and having very bad anxiety attacks and panic attacks. I was struggling.
I had a wild faith moment that changed everything for me following that, which is when everything changed for me and I was able to get rid of all of that anxiety, panic, and worry. Ever since then, I’ve been able to lean into that, my friendships, my family, and my wife. I was able to stay optimistic and faithful and keep moving forward and continue to focus on every single day. I used to get anxious thinking about the future. What is two months going to look like from now? What is a year from now going to look like? That gave me a lot of anxiety and worry. I now focus on every single day and not try to look too far ahead. I just enjoy what I have in front of me and not worry about what tomorrow is going to look like, so that’s helped me a lot.
I grew in my faith
I had a couple of friends who are college teammates of mine who flew into town after I got diagnosed. One of my friends and his wife brought me a new Bible and a new daily devotional, which was perfect. I have been asking and trying to get myself to hop back into my faith for a very long time. I was not happy with the person I was. It’s not like anything was super bad. I was empty and unfulfilled. I wasn’t happy with who I was and what I did. I used that as a good opportunity.
One day, I had a very bad panic attack and anxiety attack. The next morning, I sat down at the kitchen table with my wife and we opened up the devotional, and one of the verses in the devotional was Matthew 6:34. It was Jesus talking about anxiety and worry. He talked about why worry about tomorrow when tomorrow’s going to have its own troubles and today’s trouble is enough for today, so focus on today
I don’t know how to describe it other than this. In that exact moment, sitting with my wife at the table, I quite literally felt like a massive hug wrapped around me. It was crazy. I’ve never experienced anything like this in my life. The best way I can describe it is like a lake being perfectly flat and like glass. In that moment, I literally felt everything, all of the anxiety and worry, get pushed out of me. I was shaking and crying. It was the most overwhelming experience of my life.
I texted my friends. I looked at my wife Hannah and I said, “This is the craziest feeling ever.” At that moment, I have never in my life been more sure that God and Jesus are real, and that I’m going through this for a reason. The more I continued to think about it, I kept praying every single night, saying, “God, please do something in my life to bring me closer to you. Change my life and change my faith,” and then all of this happened.
I’m almost grateful that I got diagnosed with this because without this, none of this would have ever happened in my life. I feel like there are two reasons I’m going through this. One is to talk about my faith and the gospel. With that, I’ve started a weekly Bible study where I have six of my friends and two of them got baptized this year. That is the greatest thing for me. I was on a radio show talking about my diagnosis and I was able to share this story. That’s the first reason why I’m going through this is to grow in faith.
How I’m supporting others with cancer
The second thing is to be able to talk about colon cancer and raise awareness about it and legitimately try to save lives. We started The 3929 Foundation. The number 39 is for a family friend of mine, his name is Matt Fitzmorris. His dad, Al Fitzmorris, played for the Kansas City Royals and passed away from cancer in December, a few weeks before I got diagnosed. The number 29 was my number growing up throughout my entire life, so we decided to start this foundation.
We filed for our nonprofit 501(c)(3), so we’re waiting for that, but our goal for the foundation is to be able to help people and their families who are going through cancer by helping them financially. I know from experience. My chemo treatments every other week are $81,000. That’s how much it costs for my chemo every 14 days. $81,000, twice a month. Luckily, I have phenomenal insurance where it’s all after my deductible was hit in January, so it’s 100% paid for, so I’m very lucky. Otherwise, I’d probably have millions of dollars of medical debt.
We know how difficult it can be to make a payment on your mortgage or buy something for the house when you’ve got medical bills to pay, so that’s our priority. People can go to our website to apply for financial assistance. We’re also working on surprise donations to people at the KU Cancer Center, where I get treatments, to help them out.
We want to provide education and resources specifically about colon cancer to raise awareness. We formed the foundation in March and in May, we had a pickleball tournament and raised $15,000, which is super cool. We’ve got another event that’s more my style, which is trapshooting, that we’re doing on October 5th to raise money. We’re trying to do multiple events throughout the year. We’re starting to sell our merchandise on our website. We’re getting that all up and running.
I feel lucky and grateful that I’m going through this and able to help people. It’s crazy to me because I get told all the time by my friends and family, “I wish you didn’t have to go through this. I wish I were the one who got this and not you.” Absolutely not. I am grateful and lucky that I’m the one going through this because I wouldn’t be able to stand watching somebody I care about go through this. Watching somebody I cared about going through that would kill me, so I’m very glad that I’m the one who has it, because I know that I can deal with it and I’m strong enough to withstand it. I tell them, “Don’t ever say that. I’m glad I’m the one going through it and nobody else I know.”
I hope that I can help as many people as possible. I don’t know how long I will be here for. Hopefully, for a very long time. I hope that, however long I am here, I can help and impact as many people as I possibly can, so that’s what I’m here to do.
I have a new outlook on life
My perspective on everything in life has changed. It’s very wild. In a weird way, I needed this. I tell people all the time. I feel the best, but not necessarily physically. Sometimes I do, but mentally and spiritually, living with all these tumors and stage 4 cancer and all this going on, this is the best I’ve ever felt in my life. I genuinely mean that. It’s crazy for me to say that, but it’s true. I am so grateful that I’ve gotten this opportunity. Yes, it absolutely sucks. There’s a lot of stuff I can’t do anymore. Some days, chemo makes me want to feel like death might not be so bad, but I wouldn’t change anything about this.
What I want others to know
I was scared to go to the doctor, not because I was actually scared, but because I hated it. I thought it was pointless. Listen to your body. If you notice anything, pay attention to your body and to anything going on. If anything is different, go get checked out and see somebody. I would always push it off, no matter what it was, thinking that I didn’t need to go to the doctor and that it’d go away.
I often think about 2024. What if in July, when I started, I paid attention and cared about the things going on? If I noticed I was starting to feel fatigued and my stool was thinning, changing, and looking different, if I got checked out and they found something, maybe I wouldn’t have had a complete blockage. Maybe I wouldn’t have had 40 tumors on my liver. Maybe it would have been two and it would have been a lot different story. Maybe I would have been stage 2 or 3 instead of stage 4.
Listen to your body. If you feel like anything is off or wrong, don’t neglect it. Get checked because I was the exact opposite. Obviously, I regret it a little bit by not having myself checked earlier. Be aware of that. Take your body and your health seriously. Change the way you eat. Be conscious of what you’re putting into your body and how you’re treating it. Exercise as much as possible. Try to make a change in your life in a good way.
Everything was Fine Until It Wasn’t: Shauna’s Story of a Cold, a Cough, an X-ray and Stage 4 ALK+ Lung Cancer
Shauna was living her healthiest, most active life at 51 when everything shifted. After what seemed like a simple cold in the fall of 2018, she noticed a cough that wouldn’t go away. A quick trip to urgent care during her lunch break led to an unexpected X-ray, and within days, she learned there was a mass in her lung. Not long after, a biopsy confirmed the diagnosis: stage 4 ALK-positive lung cancer.
Naturally, the news was shocking. Shauna had no family history, had never smoked, and had just sent her kids off to start their own lives. She and her husband were busy, working full-time, and looking forward to the next chapter. Instead, she had to face something that seemed impossible.
From the start, Shauna leaned into both her medical team and the online ALK-positive lung cancer community. She discovered support groups on Facebook, where people openly shared knowledge and resources. That encouragement helped her seek second opinions from specialists in Nashville and Boston, giving her confidence in her care. Although she stayed with her local oncologist for several years for convenience, she eventually transitioned to a larger hospital in Indianapolis to explore clinical trials and gain access to more advanced care.
Shauna’s treatment has centered on targeted therapies. Her first tyrosine kinase inhibitor (TKI) kept her stable for about five years, even though she had to adjust her dosage due to side effects like bradycardia and pneumonitis. She also underwent radiation for specific spots of growth along the way. (Editor’s Note: A tyrosine kinase inhibitor is a type of targeted therapy used to treat cancer. Tyrosine kinases are enzymes that may be too active or found at high levels in some types of cancer cells, and blocking them may help keep cancer cells from growing.)
By 2024, when new nodules appeared, she switched to a second TKI. Thankfully, her scans are stable again, and she feels better on this newer medication, with fewer side effects and more energy.
Through it all, Shauna has prioritized mindset and lifestyle. She focuses on staying as healthy as possible, embracing a mostly vegan diet, exercising, and paying attention to how her body responds. Though stage 4 ALK-positive lung cancer is treatable but not curable, she chooses not to live in fear. Instead, she invests in her relationships, grateful for every moment she’s been able to spend with them.
She’s also thinking ahead about clinical trials, recognizing how important they are for advancing treatment and offering patients more time. Her biggest challenge is knowing her time may be cut short, but she finds peace in her faith and purpose in encouraging others. As she puts it, life is short for all of us. She reminds people to live fully, not to waste days in worry, and to be kind.
Shauna’s story highlights the importance of support, second opinions, staying proactive, and holding onto hope while navigating life with stage 4 ALK-positive lung cancer.
Watch Shauna’s interview to find out more about her story:
How a lingering cough led to a life-changing diagnosis
Why she turned to online communities for knowledge and support
The role her husband and family play in her care and outlook
What clinical trials could mean for her and others with ALK-positive lung cancer
Her message about choosing hope and living fully each day
Scroll down to read the transcript of Shauna’s interview.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
My name is Shauna. I live in Indiana. I was diagnosed with stage 4 lung cancer in 2018.
My family and friends would describe me as dependable and fun-loving.
When I first noticed something was wrong
Early in the fall of 2018, I had an illness, a normal cold, but my cough stayed after a couple of months. It didn’t go away. During lunch break at work, I went to an urgent care clinic where they did an X-ray and found a mass in my right lung. The person who did my X-ray talked to me about seeing the mass and told me I would need to see a pulmonologist and get scheduled.
As you can imagine, I was shocked. I scheduled with a pulmonologist and he scheduled a biopsy. I had a needle biopsy and all the scans that came after, and the biopsy came back positive for cancer.
The moment everything changed
I had just turned 51 that October and I was diagnosed in November. I was in the best shape of my life. My two kids had just flown the nest, and my husband and I were still working full-time. I was shocked. I had been eating well and exercising. I don’t have a family history of lung cancer. I have never smoked. It came out of nowhere. It was upsetting, for sure.
I searched for a different opinion
I live in a more rural area in Indiana, so we’re not close to any big hospitals. I started with a pulmonologist who was local and very good, and he was able to do what I needed done and diagnosed me. Then I found an oncologist who was local as well.
I came across a Facebook group for ALK-positive lung cancer, which helped a lot. It’s very educational, informative, and supportive. The people in that group have a lot of knowledge and that steered me to think of getting a second opinion, so I did. I went to a specialist in Nashville, Tennessee, and at Mass General in Boston, who is an ALK-positive lung cancer specialist.
I stayed with my general oncologist for about five years because I knew I was getting the standard of care. The treatment would be the same as I would get anywhere, and it was convenient being close to home. But since then, I have switched my care to a bigger hospital in Indianapolis because things are getting a little more complicated and I know I’ll have better access to clinical trials. It’s just a better facility.
It was pretty easy for them to tell, even with just the X-ray. They could see that it was in both lungs. I have innumerable little nodules in both lungs and one primary tumor in my right lung, so that made it stage 4.
How I learned about my biomarker
One of my second opinion doctors, who I see now at the Indianapolis hospital, is the one who submitted my sample to a company for biomarker testing. Everyone on my team knew what direction to go. I didn’t have that problem at all. Right off the bat, I’d say within a few weeks, I came back as ALK positive. I knew that there was a mutation and the thoracic oncologist told me that I likely had a mutation because of my age and some other things.
My treatment plan
Immediately, they started me on my first tyrosine kinase inhibitor (TKI) and at the full dose. I had some of the more serious side effects right away, like bradycardia and pneumonitis. My oncologist would lower the dose each time I experience an event like that.
At the time, that was the best and newest TKI available. We decided to stay the course and see because it had been proven with others that you could take half the dose and have it still be effective. In my case, that’s what we found. I was able to take half the dose and all the side effects went away. I was stable. I was never no evidence of disease. It probably shrank my original tumor about 40% and I’ve been stable since that time.
I was also able to scale my dose back up. By the last couple of years on that TKI, I was taking the full dose again with none of the same serious problems. I was on that first TKI for about five years until I started having some new spots in my left lung.
Then I had radiation. I don’t know what year that was exactly. They were about a year apart from each other. The radiation was targeting a certain spot where they thought they saw growth. Then I was stable and continued to stay on my first TKI.
In mid-2024, we started noticing some more growth in different spots. We were beginning to realize we had probably run out of time on my first TKI and that maybe it was time to switch because there was a newer drug out by that time. Research is so important because if I didn’t make that jump, that would have been it.
I started on my second TKI in August 2024 and that’s what I’m on right now. I have had some questionable scans, but my last scan in Indianapolis read stable.
What life is like on a targeted therapy
I haven’t had a lot of problems with side effects on either drug. I know I had a couple of serious ones off the bat because I was probably taking too big a dose for my body to adjust to it, but then I was able to go back to the full dose.
With the first TKI, I had a lot of bloating, awful constipation, and some sensitivity, but the side effects are nothing compared to the drug working. To me, that’s the most important thing.
When I was out in the sun, I learned to wear sunscreen, a rash guard, and a hat. I got used to how long I could stay out in the sun without burning. I found something to use for the constipation.
The second TKI causes a little neuropathy and tingling in the hands. I live with it, but that went away somewhat. I don’t even notice it now. I have so much more energy on this TKI as well and not as much weight gain. I’m very happy with this, as long as it’s working.
I thought that I would throw everything at it and make sure my body was in optimal position to fight what may come. As we know, it’s terminal, so I’m trying to live as long as I can. I’ve always been pretty healthy. I always exercised and took care of myself, but I’ve taken it to a whole new level now. I’m mostly vegan and eat anything that’s anti-cancer and strengthens my immunity.
I’m considering clinical trials
I came back from a conference in San Diego, where they talked a lot about clinical trials. The ALK+ Summit was there. They have a yearly conference that’s so informative because they have amazing doctors and patients who talk.
Clinical trials are the only way these new drugs will ever come into play. They have to go through trials to be approved so that everyone can benefit. I’ve spoken to my oncologist and though it’s not something we’re necessarily looking for yet, it’s definitely on my mind.
What my biggest challenge has been
My future as a grandma is gone. I have seven grandchildren and I was able to see a lot of them be born since my diagnosis. I feel for the younger moms with kids at home. I’m thankful that I was able to raise my kids.
Cancer is so prevalent everywhere you look now, in younger and younger people, and all kinds of cancers. I can’t say I was necessarily that surprised. I was surprised at what type of cancer I ended up with, but it happens everywhere.
I would love to be on treatment indefinitely if it would last that long and if this could be treated like a chronic illness.
My message of hope
I have my faith. My hope is in my eternity. I realize that life is short. It’s short for all of us. It’s but a vapor. My life here on earth may be cut short, but I live each day to the fullest and try to be kind to everyone. I’m enjoying my family and friends, and I try to have a balance in life with this diagnosis.
I have my main people: my two daughters, my sister, my husband, and my parents. Those are the people whom I feel like I could go to right at the beginning and anytime I’ve needed them.
What I want others to know
Life is short. Take each day as a new chance. Don’t be scared. Don’t live your life in fear. It took me about two years before I was able to not worry anymore. I’m not going to worry about this one more day. I’m going to live like I have all the time in the world.
How Stage 4 Hodgkin Lymphoma Changed Amina’s 20s, But Not Her Spirit
When Amina was diagnosed with stage 4 Hodgkin lymphoma (4B) in August 2021, her life as a 21-year-old dancer in New York City turned upside down. She had been training in school while navigating the pandemic when her health began to slip in confusing ways. At first, she thought it was stress, COVID, or exhaustion. But when she couldn’t climb stairs without feeling faint, woke up drenched in night sweats, and lost her appetite, she knew something was wrong.
Unfortunately, getting answers wasn’t easy. Without a primary care doctor and stuck between pediatric and adult care systems, her diagnosis was delayed for months. She had to advocate fiercely for herself, even paying out of pocket for scans when appointments kept falling through.
Eventually, an MRI and biopsy confirmed what doctors had been circling around: Hodgkin lymphoma. Hearing the official words was scary but also validating. For months, Amina had felt invisible in the healthcare system. Finally, someone acknowledged her pain and gave her a path forward. Her oncologist at Johns Hopkins immediately recognized the seriousness of her case, which gave her a sense of trust and relief.
Amina’s treatment lasted seven months and included intense chemotherapy. While she was grateful to receive care as an outpatient, the physical and emotional toll was heavy. She lost her hair, felt disconnected from her body as a dancer, and struggled with neuropathy in her feet. She also wrestled with body image challenges while trying to keep up with the demanding culture of dance. Still, she leaned into small joys, like having ice cream when nothing else tasted good, and gave herself space to rest when she could.
Being so young in a cancer ward was isolating, but Amina refused to stay silent. She began sharing her story on social media, connecting with other adolescents and young adults (AYA) navigating cancer and health inequities. Many reached out, saying they felt like they slipped through the cracks. What started as venting grew into a form of advocacy, helping others feel seen.
Amina’s family, friends, and community were her anchors. Friends showed up with flowers, trips, and support; her parents carried her through appointments and recovery. Later, when her father was diagnosed with acute myeloid leukemia, she was able to use her experience to help him access care quickly.
Now in remission, Amina embraces what she calls “thrivership” — living with intention, protecting her energy, and finding happiness wherever she can. She wants other young people with cancer to know that life doesn’t have to follow a strict timeline. Progress may look different than planned, but with patience, connection, and self-advocacy, it’s still possible to create a fulfilling and beautiful life.
Watch Amina’s video or read the interview transcript below to find out more about her story:
From dance rehearsals to chemo infusions, Amina shares the raw reality of being young with cancer
Why social media became her lifeline during treatment
The surprising way her cancer diagnosis helped her father
How survivorship reshaped her priorities and sense of joy
Name: Amina V.
Age at Diagnosis:
21
Diagnosis:
Hodgkin Lymphoma
Staging:
Stage 4B
Symptoms:
Severe fatigue
Shortness of breath
Night sweats
Bloating and stomach distension after eating
Abdominal pain
Little to no appetite
High fever
Lump in the pelvic area
Treatment:
Chemotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I was diagnosed with stage 4 Hodgkin lymphoma (4B) in August 2021.
I’m originally from Washington, D.C., but I live in New York City now. I’ma professional dancer, so that’s my 9 to 5. When I’m not performing, I also work as an educator and rehearsal director for young artists and teaching dance. Dance is my number one love and my number one passion, and it’s also what I do for fun.
My friends would say that I’m a bubbly person. I’m definitely very friendly, and when I’m out with my friends, I’m very outgoing. I like to have a good time, try new things, and new experiences. Above all else, I always like to show up for my friends and the people I love and who love me. I believe in loyalty and having each other’s back.
There’s a special photo that stands out to me right now, which is a picture of me and my dad at Light the Night, which is an event by The Leukemia & Lymphoma Society, now called Blood Cancer United. Then Leukemia & Lymphoma Society would hold an event for cancer survivors and honorees, like advocates in the cancer community, and I was there with my dad and they were honoring me. But at that time, he was also about to find out that he had acute myeloid leukemia, so it was a moment that symbolizes me finishing my journey and him starting his. Looking back, it’s crazy and special.
When something first felt off
I first found out I was sick in my final semester of training. I went to The Ailey School for four years. It’s conservatory-style training, pretty much at the highest degree, preparing you for a professional career as a performer. It was also during the COVID-19 pandemic, in the fall of 2020, and everything was messed up. We were in masks. Everyone thinks that a cold could be COVID. I had been feeling off for a while, but I chalked it up to flu season. It’s COVID. I have to quarantine. But then when I went back to school and my regular routine of five classes a day, I found that I was super fatigued at the end of the day. It wasn’t the regular kind of tiredness. I couldn’t go up one flight of stairs. And in New York City, you’re walking everywhere all the time. I have to walk up the stairs in my apartment building and walk up the stairs to go to the subway. Tthere were some days where I felt like I was going to pass out. That was red flag number one.
The second red flag was night sweats. I would wake up in the middle of the night and my clothes would be drenched and my bedsheets were wet. I would always joke and say it was menopause, but I was 21, so this was not menopause. Why am I getting hot flashes in the middle of the night?
The third red flag was I had little to no appetite, and whenever I did eat, my stomach would swell and distend, so much. I would have cereal in the morning and you would think I went to an all-you-can-eat buffet. Then I would have to go to class and be in a leotard and tights with a bloated stomach. It felt awful.
I first noticed these symptoms in December 2020. I got it checked out in 2021, around early January and February. But they continued until my treatment started, which I didn’t start until August.
There was a big delay in my diagnosis
There was a lot of trial and error. I didn’t have a primary care physician. I was there for school, so I relied on minute clinics. But the one doctor I had a good relationship with was my OB-GYN. I felt a lump in my pelvis, which I thought might be a cyst, so I went to her. She recommended getting an ultrasound and doing bloodwork, and that’s when we found that my blood levels were off the charts. She passed me along and pretty much said, “This is out of my jurisdiction. However, I highly recommend you get an MRI and take this to a hematologist.” That then led to months and months of trying to get appointments because this was in 2021, so getting a doctor’s appointment was difficult in the city.
I learned that if you’re not 22, you’re still considered pediatric. I was making appointments at grown-up doctors’ places because I thought I was a grown up, and then they would get canceled because my insurance was saying I was still a kid, so I needed to go to the children’s hospital. I think that led to a lot of delays in diagnosis because I wasn’t officially diagnosed until July.
I ended up having to take matters into my own hands and get an MRI at an out-of-network clinic, and that’s when they found the inflamed lymph nodes. But from there, I had to wait another month or two for a biopsy appointment. In between that time, my symptoms got increasingly more aggressive. I ended up being hospitalized and that’s when they told me that I might have cancer.
My boyfriend was with me at that time. We were living together during this whole process. My parents had also been aware that I’d been sick and they’d seen the MRI results, which showed the inflamed lymph nodes. Everybody seemed to have a clue that I possibly had lymphoma, except for me, because I didn’t know what that was. Everyone was on high alert. I had a fever of 104℉ one night, so my partner took me to the emergency room.
I was stressed and afraid. However, it got to a point where it’s like, “Look. This is my last semester of school. I’m still dancing in a mask. We’re in boxes, social distancing. I either have to think about whether I want to finish strong so I could potentially get the job or take care of my health and set myself up for the long term.” That was the decision I ended up making. I would miss a lot of classes because I had to go to doctors appointments or I would try to be as transparent as possible with my teachers, sharing the information I have, and letting them know that I wasn’t at 100% and I don’t know why, but that I’m doing my best.
I’ll be honest, advocating for myself didn’t come easy to me. I was trying to do everything the right way, following the doctor’s orders, listening to my parents, and waiting. But when, time and time again, doing things by the book was not working in my best interest, that’s when I said, “I need to get this done. Where in this city can I get an appointment tomorrow? And if it costs a lot, then that’s just the price I have to pay, but I need to know something.” The waiting was driving me crazy.
I got treated in D.C. That came about because of all the hoops I had to jump through on my own in New York. I was young. My boyfriend was also young at the time, so it was a lot for us to manage on our own. My parents wanted me to move back home and get treated there so that they could help.
How I found my care team
It was a very fast-moving process because everything took so long that we tapped into our family and friends resources. I was very fortunate that my mom had a cousin who worked at Johns Hopkins and she helped with speeding along the process of getting an appointment and getting all of my pathology from New York passed along to the hospital in D.C. so that I can be seen and treated quicker.
When I met my oncologist, he was the first doctor who validated how I felt. They kept saying I might have lymphoma and the whole hesitancy to be transparent with me was that I was young, so they didn’t want to be negative or dampen the mood too soon without having all of the answers. I understand that perspective, but I felt like I was dying. For them to say that it might not be anything that serious sucked because what, was I going crazy? I knew I wasn’t. But he was the first one to look at me and say, “Yes, you are very sick. Yes, this is 100% lymphoma. We’re getting your pathology. However, you’re checking all the boxes and we need to get you started next week.”
I ended up trusting him 100% because he looked at me, did the exam, looked at my reports, and shared in my frustration. Even without the pathology to 100% confirm it, everything else lined up with a patient who has Hodgkin lymphoma. The outlier was how young, active, and healthy I was. Besides that, everything else made sense.
The fact that he shared that frustration and validated how I was feeling made me feel close to him and made me pretty much trust him with my life because that’s what you’re doing when you’re choosing an oncologist.
When I heard the words “you have cancer”
I was very emotional. It was a relief to have an answer. I remember having a little bit of jitters or goosebumps because it’s a tough reality to face. However, on the flip side, it was nice to have an answer to all the questions that I had swirling around in my head for months. I’m not immunocompromised. It isn’t COVID or the flu. This is exactly what it is and here’s how we’re going to treat it. Having that clarity helped me find peace, oddly enough. I know I was going into the hardest thing I was ever going to have to do in my life and that some people don’t even have to face thankfully, yet I felt calmer having that clarity.
What my treatment plan looked like
I had to do seven months of chemo. It was rough. Chemo sucks. It literally zaps you of any energy. However, in the beginning, I think after my third cycle, I was tired, but feeling better. It was the necessary evil that I had to go through in order to get cured. It’s just hard. Especially since the treatment plan that I had included a specific drug that causes bone pain and another drug that makes you lose all your hair, so it’s tough. I felt like I was losing parts of myself in a sense. I didn’t have any energy. I didn’t want to socialize with people. I wanted to be alone after my infusion days. I would get treatment once a week and then I would have a week to recover. On my off weeks, I felt a little better every time. Every off week, I was getting stronger and stronger and stronger. At the moment, it’s not fun at all, but then the results are worth it.
I was fortunate enough to be an outpatient. I would be in the hospital for a full workday, around 6 to 8 hours a day, and then my dad or my mom or whoever was there with me would take me home.
They gave me this body patch and it would administer medication at home as well.
Managing the side effects of chemotherapy
I developed neuropathy in my feet, which was a tough part of recovery, especially since I need them for my profession. After a few months, I was able to start dancing again. I was even ambitious enough to try and take classes every now and then while I was still getting treatment. It wasn’t at the level I was before I got sick — that took a lot of time — but I was fortunate enough to have a mentor who gave me a space to quite literally fumble around and reconfigure myself. I appreciate her for that because I think that allowed me to get to where I am today.
I didn’t like the way food tasted, which was a big one. I didn’t want to eat anything except Ben and Jerry’s ice cream. My parents would be so concerned, saying I couldn’t eat ice cream because it’s sugar. I said, “Mommy, I have blood cancer. It’s different. And the doctor says I need to put weight back on, so I should eat lots of ice cream.” That was the only thing that I could taste, something sweet
With the chemo, they gave antiviral medication and that made me very agitated. I appreciate my family for being patient with me during that time because I’m sure I was being a diva. Being on different medications puts you in a loopy state. There were a lot of people who visited and were with us in the house, and though I wanted to be social, at a certain point, I would get drained and shut off. Even after I finished, for a few months, I would find that still happening. It’s like this fog went over my brain. My eyes were glazed over and I completely checked out.
It was hard, honestly, because I felt like I had to fake it and make it seem like everything was okay. I didn’t have an explanation at that time as to why I felt awful or uncomfortable. As a young dancer, I was struggling with body dysmorphia. I had to stand for an hour and a half in front of the mirror and even though all I had was cereal for breakfast, I’m bloated and my clothes don’t fit right. I feel uncomfortable, but I still have to go through my day pretending like everything is okay. I have to show up and give the teacher energy.
There was even one moment when I did this photo shoot and the photographer was frustrated with me because I was very quiet and timid, and it was coming through in the photos; in reality, I was just exhausted. I felt tired and everything about being in that space was draining in the moment. It was tough because my job and what I was doing in school was so physical, so there’s no way to dial it back. I either have to push through and push myself to the limit, which often happens. That’s how I got hospitalized. Or I give up and I’m not good at giving up.
How I navigated having cancer so young
I was the only young person in the infusion ward. Whenever I would go, people always thought my dad was the patient, but he was bald by choice and I wasn’t, so that felt isolating
Beyond that, I had just finished school in New York and was building my own life. I just got my own apartment and then I had to leave it all behind and go back home. In a lot of ways, it felt like I was going back in time, like going back to square one. For a little bit, it did break my spirit. I felt defeated. I relied a lot on finding ways to entertain myself and fill my time. Being Gen Z and in my 20s, TikTok and Instagram were my coping mechanisms.
What I think was unique about me being a young person with cancer is I made the choice not to suffer in silence, so I told my friends about it and posted on social media about it. Through that, I was able to find a community of people going through similar experiences at my age. Even though they weren’t physically there with me, I found them online.
When I was in treatment, I was connecting with a lot of people who were asking about my experience and asking for advice for themselves or for loved ones. Even if they didn’t have cancer and were dealing with other health issues, they would ask, “How did you push through? The doctors keep telling you no or to come back when it was worse than it is now, instead of treating you.” By sharing my experience, it opened a can of worms on the fact that a lot of young people, regardless of a cancer diagnosis or not, have this issue where we slip through the cracks of the healthcare system, whether we’re still on our parents insurance or not, and we’re still treated as kids even though we handle all of our own finances and do things on our own. Or we just got booted off our parents’ insurance, so now what do we do?
Through that, I connected with a young woman who was in India getting treated for breast cancer. She was thanking me for sharing my story because she was 30 and she thought that she was the only person dealing with this. I also found a lot of other nonprofits for women like me or young people like me who feel isolated and connect them to each other. What I thought was just me venting turned into a form of advocacy, so when I saw that there was this interest and need for connection, I stuck with it and have met so many beautiful people because of it.
It’s important to have these conversations so that other young people can learn from my “mistakes.” I don’t want to say mistakes because I didn’t know, so by sharing, it hopefully gives others information so that they are more informed and knowledgeable, and feel empowered to speak up for themselves and not take things in blindly.
The hardest thing was accepting that everything was going to change. Not just biologically, but even around me, things were going to change, and a lot of those things would be permanent. My relationships with people, with friends whom I had in New York, and with my community would shift — some for the better, some not so much. I also felt like the world was moving on without me, which was a scary feeling. I needed to focus on getting better, but also, what does life look like outside of this? In that moment, the most frightening thing was the unknown and the change.
I was a little lucky to have had family members who had battled cancer in the past, even though it was in a different form. I have a cousin who is a breast cancer survivor and took her experience of being diagnosed in her 30s and turned it into advocacy, so I had her as a role model. This is hard. Everything is going to change. However, you will come through fortified and stronger. In the moment, it’s hard to believe when people tell you good things and they give you advice. You want to take it all in, but there’s a little voice in your head that says, “I don’t know.” Having her guidance definitely helped a lot.
I had to have trust because in that instance, there’s nothing I could control. My body literally woke up one day and said, “We’re going to shake things up,” and there was nothing I could do about it. Once that switch is flipped, I have to take the necessary steps to fight. I know sometimes that can be tough for people, but I’m comfortable with the fact that I had to battle cancer because it’s literally a war inside my body. I either make the choice to take steps against it or not. I feel like you have to fight against it, not just with how you treat it, but also with your mindset and your mentality. Hope and positivity and a little bit of delulu were all I had.
The sky isn’t even the limit anymore because I’ve been faced with my own mortality. I thought that my life was going to be cut short at 20-something. I’m 26 now and have a whole lifetime ahead of me, so I’m going to do everything I possibly can.
My support system helped get me through the hard days
I have an amazing family that came together to support me during this time, even our community in DC showed up, like my parents’ friends who supported them. I think it’s important for caregivers to also receive support. When I don’t have the energy to greet people, they were still there for my mom and my dad, which made me happy because they’re struggling with this, too. Even though I’m the one who’s actually receiving the medication, they are invested emotionally and financially, and sacrificing their time to be there for me, so I’m glad that they also received support.
Most importantly, I saw who my friends were. Being in New York, there are millions and millions of people here. I like to talk to people, make friends, and hang out. I have friends who took me to a resort while waiting for my pathology report. We had a vacation planned and I said I couldn’t go because I had cancer. She asked, “What are you doing during the week while we’re gone?” I told her I was going to cry in bed at home. She said, “No, we’re going to go,” and she took me to the Dominican Republic. The week after, I had to go to D.C. I had two other friends who would send flowers to my parents’ house and who drove from New York to visit me. It showed me, even when I can’t be there for them the way I want to, that they’re still there for me and it was so beautiful.
What survivorship means to me
Survivorship, or thrivership as I like to say, honestly looks like finding my happy. I try to find happiness and joy in any scenario, living and loving life to the fullest, not putting any limitations on myself, taking care of my health physically, mentally, and emotionally, and protecting my energy.
I found that I don’t need to please people. I don’t need to overextend myself. I don’t need to do things that I don’t want to do or that don’t serve me. Surviving cancer taught me that. A lot of people say, “Wow. I feel like you’ve grown so much.” I just got a reality check. I got a true sense of what matters and how I want to spend my time on this earth.
What I want others to know
Even when it’s hard, it does get better. You don’t necessarily have to rely on things outside of yourself to make it better. Finding what brings you joy and calm is what’s most important, even when you’re going through the hardest or scariest time of your life.
Specifically for AYA cancer patients or young people in general, setting this deadline or checklist for yourself of when and how things need to be accomplished is hindering you from going for it. I had a set plan. I was going to go to this school, graduate, get into this company, and complete these things by this time. When it doesn’t happen, you feel defeated. You feel like you’ve lost, when in reality, it could just be a few more steps away and you just have to keep going. In the arts industry, but also in life in general, I feel like we’re all in a queue. You either decide to stay in the line and see it through, or you get out right before the thing you’ve been dreaming of is about to happen. Youth is a blessing, but we also don’t need to accomplish everything right away. If we stick to it, find our happiness, and keep fighting, then you will achieve everything you put your energy into.
How often I’m monitored
I was being monitored every other month and then every three months. Now it’s every six months. Everything’s been good so far. My doctor has been conservative with the checkups because I’m not doing it with a PET scan, which I think is the traditional way. Because of how advanced my cancer was, I didn’t have the luxury of time to do any fertility preservation, so he wants to limit my exposure to radiation as much as possible.
My dad was diagnosed with cancer after me
It was shortly after I had finished chemo. He started experiencing symptoms and then he was diagnosed almost exactly a year after I finished.
He chalked it up to him getting older. I went through all the hardship I had to go through to help him. AML in your 60s could be a death sentence. Thankfully, there has been a lot of development and research into it, so that it’s treatable now. I can’t imagine what it would have been like if he had to jump through six months of hoops like I did.
In our case, he called me and told me what was going on, asking my thoughts on it, and sharing his experience. I texted my doctor and asked, “Can I send you my dad’s charts? Because it looks scarily similar to what I had. Can he come and see you?” He was able to go the following week.
Some people say, “I would be so upset. How can you stay so positive when all this is happening back to back to back?” I took it as what I went through was not in vain because it’s literally helping my father right now get the treatment he needs and what he deserves. Now he’s still here and in remission. Being in remission and being a survivor doesn’t mean everything’s all rainbows and sunshine, but we both made it through, so for that, I’m grateful.
Symptoms: Intense itching (no rash), bruising from scratching, fever, swollen lymph node near the hip, severe fatigue, back pain, pallor Treatments: Chemotherapy (A+AVD), Neulasta
Symptoms: Severe fatigue, shortness of breath, night sweats, bloating and stomach distension after eating, abdominal pain, little to no appetite, high fever, lump in the pelvic area Treatment: Chemotherapy ...
“You Are Not Your Cancer”: Colleen’s Stage 4 Endometrial Cancer Message
Colleen discovered she had stage 4 endometrial cancer in 2022, when she was 54. Her story began with severe, unusual menstrual bleeding, which she humorously calls “crime scene periods,” and episodes of extreme weakness. Doctors told her she was just experiencing perimenopause. Her symptoms persisted until she and her husband moved to Germany, where she had a car accident. She was lucky enough to escape injury from the accident — but during her ER check-up, doctors unexpectedly found a mass in her abdomen. This twist of fate ultimately led to her diagnosis.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
After she was diagnosed, Colleen leaned heavily on credible medical resources focusing on endometrial cancer, rather than simply searching online. She underwent a multitude of treatments: a full hysterectomy, radiation, brachytherapy, and chemotherapy. She was initially declared “no evidence of disease,” but later on her doctors discovered that the cancer had spread to her leg and lung. Her voice, once her signature as a singer, was deeply affected, challenging her sense of identity and plunging her into emotional lows. But Colleen ultimately managed to shake off these challenges.
Mental health became a pivotal part of her healing. Colleen found solace in community support, friendships, and maintaining a semblance of independence. Her message is clear: “You are not your cancer.” She urges others to find their support systems, relentlessly communicate with healthcare providers, and cling to personal beliefs that provide comfort.
Watch Colleen’s video and read her story. You’ll find out more about:
How a car accident led to her life-changing diagnosis
“You are not your cancer” — Colleen’s heartening mantra
How losing her singing voice affected her identity
The emotional toll of stage 4 endometrial cancer and finding light in community
The crucial role of self-advocacy in Colleen’s health journey
Name: Colleen J.
Age at Diagnosis:
54
Diagnosis:
Endometrial Cancer
Staging:
Stage 4
Symptoms:
Very large blood clots during menstruation
Anemia
Treatments:
Chemotherapy
Radiation therapy: brachytherapy
Surgery: full hysterectomy
Immunotherapy
Thank you to Karyopharm Therapeutics for supporting our patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
… whatever you believe in, hang on to it. If it’s a religious belief, if it’s a way to lead your life, hang on to those things.
About Me
Hi, my name is Colleen.
I was diagnosed with endometrial cancer in 2022, when I was 54.
When I First Noticed That Something was Wrong
The first time that I wasn’t feeling right, I was living on the island of Guam. It was before COVID, probably in 2019. I was at a volunteering event for the United Service Organizations.
I had to tell the woman that I was working with that I needed to leave, which was very unusual for me, but I was just feeling very unwell. I couldn’t catch my breath and felt very weak. I thought this probably was the onset of a big anemic episode, because then, when I got home, I had what I like to call a “crime scene period” — a menstrual period with very large blood clots.
I couldn’t find a doctor who would take my insurance in Guam. I went back to the States to visit my husband and saw a doctor there. And that doctor said, “Oh, you know, it’s probably just perimenopause. You’re at that age where this can start coming on, so I wouldn’t take it too seriously.”
Then we moved to Germany, and one of the first times I was driving in Germany, I got in a car accident.
They took me to the emergency room. I was totally fine after the accident. No issues. I walked away from it.
But the ER doctor came and said, “You know, we found something unusual in your abdominal area, so we’d like you to refer to our OB-GYN? Are you interested in doing that?” And I said, “Sure.”
Before the accident, I had actually been experiencing more “crime scene” menstrual periods, and they even seemed to be getting worse.
My Symptoms Had Progressed Even Before the Car Accident
Before the accident, I had actually been experiencing more “crime scene” menstrual periods, and they even seemed to be getting worse.
In hindsight, looking back, I was actually having a hemorrhage. I was going through multiple pads in 20 minutes. I would be doubling up on tampons and going through them in 20 minutes or half an hour, which would be described as hemorrhaging if it were any other type of issue. Something that you would need to go to the emergency room for.
But because this one doctor had told me, “Oh, you know, you’re perimenopausal, this just is par for the course,” I thought, “I guess this is normal,” even though it didn’t seem very normal.
The Tests the Doctor Did
He did an ultrasound in his office and went, “Oh, yeah, I’m going to keep you in the hospital.” So, this is still from the hospital stay from the car accident. “We’re going to do a DNC so that I can get enough tissue to send for a biopsy.” Because that’s the other thing with endometrial cancer. If they don’t get it in the right part of your uterus, then you can also have a misdiagnosis, because they’re not getting enough tissue, or they didn’t go to the right area.
Luckily, he was an oncologist before. He got his OB-GYN certification. So he knew a little something about what was going on.
The Moment Everything Changed
I don’t know when I heard the word ‘cancer.’ Well, nobody ever wants to hear that word, but my OB-GYN was really a positive person.
He went, “Listen, we’re going to schedule you for a full hysterectomy. We’re going to take a look around at the other organs in the area, see what’s going on. But if this is in the early stage, this could have a really good outcome for you. So, no need to worry right now about it. Even though I’m telling you ‘cancer,’ and nobody likes to hear that, let’s take each thing as it comes. Instead of trying to see into the future.”
I took it to heart. Generally, I felt okay; I wasn’t hurting and didn’t have a lot of pain at the time.
I actually knew nothing about stage 4 endometrial cancer, let alone endometrial cancer. The education was from what my doctors were giving me here and from going to reputable cancer sites. So, not just using Doctor Google and picking the first article that came up, but from the Cleveland Clinic, Mayo Clinic, MD Anderson, and other leading cancer centers in the US.
I was trying to back up what I needed to do and what the typical treatment would look like.
The Cancer Spread
After that point, I had my treatment.
I did radiation for 28 days. I did brachytherapy, which is an internal radiation in the vagina. Three sessions of that. That’s all standard. I didn’t start with chemotherapy, so they did my hysterectomy in April 2022. I didn’t start my chemo until October, and so then my chemo finished up in around March of 2023. Well, maybe a little earlier than that.
At that point, they considered me “no evidence of disease.”
Nine months afterward, though, right before Christmas 2023, we found out that the cancer had spread to my leg. My leg broke while I was putting on my pants.
Oh, that was a big emotional time. I mean, anytime you hear about bone metastasis, it’s not good news. Cancer is practically impossible to get out of the bone. It’s very hard to treat. Pretty much all you can do is slow it down.
… anytime you hear about bone metastasis, it’s not good news. Cancer is practically impossible to get out of the bone.
How My Care Team Shifted When My Cancer Spread
As my disease was progressing, the doctor said, “Okay, it’s time to move on. We have some other teaching hospitals in the area.”
So he moved me over to get most of my care through those hospitals and through my infusion clinic that I go to now. So he knew when it was time to release me as well. I felt like he was watching out for me and was trying to offer me the best choices that were available.
When I broke my leg, I wasn’t under his care. I was under the care of the orthopedist at the same hospital where he worked. Although he always asked that when I come to that hospital that I stay in his ward. Because he knows my whole history, he can keep an eye out for me.
Breaking my leg was pretty traumatic. I’m kind of a get-up-and-go type of person. I don’t want to be limited in what I can do. I was fighting with everything to get back to driving, get back to being more independent.
I really liked my care team in the bigger facilities, like my radiological oncologist, and I liked that I actually ended up having to see a pulmonologist, because they discovered while I was healing from the femur break that I also had metastasis in my lung.
It was freaky. You can see the damage to my vocal cords. They were extremely swollen from having tubes stuck down so many times during the surgery for my leg. I had a failed bronchoscopy, a successful bronchoscopy, and then the surgery. The pulmonologist at the bigger hospital was really trying to take care of it, but he said, “The damage was done even before I got a chance to get the tubes down your throat.”
I took a good six months, maybe even a little longer, to get any type of singing sound out of my voice, and to have my voice not sound scratchy when I was speaking.
I’ve been known for having a beautiful singing voice. It’s been such a big part of my identity since I was tiny. I started singing when I was three.
My voice is such a big part of my identity that when cancer affected it, it sent me spiraling into a depression of sorts.
Where I’m At in My Diagnosis
I had an episode during which I coughed up blood. What with that and my metastases, they said, “Let’s try something other than chemo.” They put me on immunotherapy for about six months.
That was miserable, pretty much because I was eating that soft food diet, kind of the same diet as when I was having the radiation therapy in my abdomen. But I would get sores in my mouth, and I couldn’t eat anything. I went from being 200 pounds down to 126 pounds. Then that stopped working because I had another episode.
They decided, “Okay, let’s go back with the traditional chemo, but we’re going to see you every week. It’ll be a lower dose.” That’s what I just finished in July. And then I had a few spot radiation treatments on my leg where it had broken on my knee and on my hip.
And then they found another potential area of concern in my hip. So they did a biopsy of that. It had to be sent to the Molecular Tumor Board.
I haven’t heard back about what molecular markers might be available for other treatments for me.
I had an episode during which I coughed up blood. What with that and my metastases, they said, “Let’s try something other than chemo.” They put me on immunotherapy for about six months.
My Knowledge of Clinical Trials
The doctors haven’t referred to clinical trials. The area that I am in is so rural that I don’t think there are a lot of clinical trials that happen here. And they have used the term ‘palliative care,’ which freaked me out the first time. Because I have stage 4 endometrial cancer, they’re considering everything that they’re doing.
I’ve been on palliative care for a year and a half. They consider it an extra level of care for patients who might need some help doing things.
My infusion doctor said, “We have these teams of doctors and nurses that will come into your house and help you. So, we would call that home health care. Except for your getting a doctor and a nurse coming in.” So he set me up with them.
He added, “The great thing about them is that they can help you manage your pain a lot better than I can.”
How I’m Managing my Mental Health
Unknowns are hard. I like to be in control. So that’s what my stage 4 endometrial cancer experience has been about. Sometimes you just have to release it. Release it and keep pressing. Like with the pain. Keep telling your doctors over and over about it.
It’s also been important to stay connected with my friends and stay involved in the community.
I should also add that maintaining my independence is also really important. Continuing to be able to get myself around if I want to go for a drive, although I’m doing that less and less, because my right leg is the one that has the cancer. So, it’s not great for driving sometimes. I just stay home if I need to stay home.
It’s also been important to stay connected with my friends and stay involved in the community.
What I Want Others to Know
You are not your cancer. You can do what you want to do with it.
Although stage 4 endometrial cancer does have something of my identity. It’s a new identity that I have besides being a singer, a wife, and a singing teacher who is now raising awareness about cancer.
It’s really easy to go inward and reduce your social circle. But I would urge people to find your compatriots, like through some of the groups on Facebook. There are a lot of really great groups on Facebook for a lot of different types of cancer.
It’s interesting how some friends react. Some will become more distant, but others will set up your meal trains and sign up geniuses for you.
I think the biggest thing for me has been a chance to reflect on cancer, and whatever you believe in, hang on to it. If it’s a religious belief, if it’s a way to lead your life, hang on to those things.
Just keep looking up, whatever your diagnosis is.
You are not your cancer. You can do what you want to do with it.
Special thanks again to Karyopharm Therapeutics for its support of our independent patient education content. The Patient Story retains full editorial control.
Allison’s Example of Self-Advocacy Living with Stage 4 ALK+ Lung Cancer
Allison describes herself as outgoing, energetic, and always on the move, so when back pain began interrupting her workouts and daily activities in late 2022, cancer wasn’t even on her radar, let along stage 4 lung cancer (ALK positive). She pushed through months of pain, assuming it was a muscular issue, until one night in May 2023, when her husband had to carry her to the bathroom. That moment shifted everything.
After urgent care scans revealed spinal lesions, Allison’s medical background helped her piece together what was happening before doctors even confirmed it. Within weeks, she learned she had stage 4 ALK+ lung cancer, a diagnosis that felt surreal for someone who never smoked, lived a healthy lifestyle, and was deeply engaged in her family and community. The shock was intense, but Allison quickly realized that information, self-advocacy, and support would be key to moving forward.
Once biomarker testing identified her ALK mutation, she started an oral targeted therapy. The results were dramatic. Within a week, Allison’s pain diminished, and she was able to sleep comfortably again. However, treatment wasn’t without hurdles. She dealt with side effects like a severe rash, high cholesterol, neuropathy, and swelling, but she leaned on her medical team, expert consultations, and peer support groups to find ways to manage. Alongside medication, she underwent radiation to stabilize her femur and strengthen her bones against further damage.
Throughout her experience, Allison has emphasized the importance of self-advocacy. She highlights the importance of asking questions, seeking second opinions, and bringing ideas to doctors, especially since rare mutations like ALK require specialized expertise. She continues to work closely with her local care team and renowned experts to explore treatment strategies, including potential clinical trials and even surgical removal of her primary tumor.
Living with stage 4 ALK-positive lung cancer has changed Allison’s perspective. She now plans life in 90-day increments between scans, while still looking ahead to milestones with her kids and future adventures. Although the unknowns remain challenging, Allison focuses on hope, community, and joy. She encourages others to face the light, believe in progress, and remember that anyone with lungs can get lung cancer. Her message is one of resilience, empowerment, and choosing to live fully while navigating life with cancer.
Watch Allison’s video to find out more about her story:
How back pain turned out to be a sign of stage 4 ALK-positive lung cancer
Why never smoking didn’t protect Allison from a lung cancer diagnosis
The targeted therapy that brought her relief within just one week
How self-advocacy shaped her care and treatment decisions
The hope and positivity that guide her every step forward
Biomarkers and Targeted Therapy: How Lung Cancer is Treated Today
Name: Allison Z.
Age of Diagnosis:
45
Diagnosis:
Non-Small Cell Lung Cancer (NSCLC)
Staging:
Stage 4
Mutation:
ALK
Symptom:
Severe back pain
Treatments:
Targeted therapy: ALK inhibitors
Radiation therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
How Faith Sustains Maria Through Incurable Stage 4 Stomach Cancer
Maria’s life changed dramatically in 2021 when what she thought was a simple stomach issue turned out to be stage 4 stomach cancer. She was an energetic, vibrant former model and devoted mom, busy moving during the pandemic. Her initial symptom seemed minor, but rapid, unexplained weight loss, fatigue, and vomiting pushed her to seek urgent care. An emergency endoscopy revealed something far more serious.
From that shocking diagnosis onward, Maria faced the disease on multiple fronts — physically, mentally, emotionally, and spiritually. She leaned deeply on her faith, her church community, and her close-knit family. Prayer became a daily anchor, not just for comfort but as a source of strength and hope. She joined her church’s prayer team, finding meaning in supporting others even as she navigated her illness.
Physically, Maria stayed active even on her weakest days. She walked on a treadmill, sang, and did small acts that made her feel good because they reminded her she was still living. She embraced a healthier diet, adapted her routines, and refused to let cancer completely define her daily life.
Medically, Maria’s path was complex. After initial chemotherapy, she underwent laparoscopic surgery at Memorial Sloan Kettering, which removed the tumors blocking her digestion while preserving her stomach. For a time, things looked promising. But multiple recurrences brought more chemotherapy, changes in treatment, and targeted radiation. She sought second opinions at top cancer centers, navigated genetic testing, and made thoughtful decisions about her care, always emphasizing self-advocacy.
Spiritually, Maria experienced a transformation. Before her diagnosis, she wasn’t a particularly spiritual person, but cancer shifted her perspective. She says faith not only changed her outlook but also helped her body heal. She credits her medical team, prayer, and staying active for getting her to where she is now: living without current signs of active cancer, with only a small area of uncertainty that doctors are monitoring closely.
Maria is honest about the ongoing challenges, like fatigue, physical limitations, and the ever-present fear of recurrence. However, she emphasizes the importance of hope, gratitude, and the power of community. Her advice is to stay engaged in life, ask questions, and take an active role in your care. “Hope is what keeps us going,” she says, and her story proves it.
Watch Maria’s video to know more about her story:
Maria thought it was just an upset stomach until the endoscopy changed everything
Why staying active even on her weakest days became her lifeline
How faith transformed her cancer experience in ways she never imagined
The self-advocacy lessons Maria wants every patient to know
How prayer and worship gave her hope despite incurable stomach cancer
Name:
Maria C.
Age at Diagnosis:
50
Diagnosis:
Stomach Cancer
Staging:
Stage 4
Symptoms:
Rapid weight loss
Fatigue
Inability to hold food down
Treatments:
Chemotherapy
Surgery: robotic distal gastrectomy
Radiation therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptoms: Issues swallowing, swollen gland in the neck
Treatments: Palliative chemotherapy was offered but declined, nutritional changes to support her comfort and energy, meditation and mindfulness practices, self-directed healing methods
How Flu-Like Symptoms Led to Megan’s Stage 4 Melanoma Diagnosis
Megan’s road to stage 4 melanoma began in 2018, when she spotted a new mole near her neck and face. A dermatologist confirmed it was melanoma, stage 1A. She had two surgeries: first to remove the mole and any lingering cancer cells, and another for reconstructive purposes. With no follow-up treatment recommended, she kept up with regular skin checks and assumed the risk of recurrence was low.
Years later, flu-like symptoms over the holidays turned into severe chest pain. An X-ray revealed a collapsed lung. After tests, doctors confirmed the melanoma had returned — this time as stage 4 melanoma in her lung. Megan was shocked, especially since her lymph nodes were clear. But she quickly found a supportive care team and even sought a second opinion at Moffitt Cancer Center to ensure she was on the right track.
Megan’s first treatment was immunotherapy, which didn’t stop the tumor’s rapid growth. At one point, the tumor reached 26 cm, causing extreme pain and breathing problems. Because she was BRAF positive, Megan started targeted therapy pills. One drug didn’t work well, but another produced almost instant relief and significantly shrank the tumor. This allowed for surgery in January 2024, followed by radiation for two small recurrences. (Editor’s Note: According to the Johns Hopkins Medicine website, BRAF is a gene found on chromosome seven that encodes a protein also called BRAF. A BRAF mutation is a spontaneous change in the BRAF gene that makes it work incorrectly, but not all mutations in BRAF cause cancer.)
Life with stage 4 melanoma has changed Megan’s perspective on health, priorities, and community. Side effects from long-term treatment include fatigue, occasional body aches, and digestive issues, but she’s learned to manage them. She’s also navigated deeply personal losses, like the likelihood of not having children, something never discussed with her doctors early on.
Megan now focuses on nourishing food, meaningful connections, and work that energizes her. She’s active in melanoma support groups, sharing her experience to help others feel less alone. She emphasizes the importance of early detection, advocating for skin checks, sun safety, and rejecting harmful beauty standards leading to risky procedures like tanning.
Megan’s story is one of resilience as she chooses to live fully, connect deeply, and help others navigate the complicated emotional and physical realities of survivorship. Her authenticity, advocacy, and openness make her a voice of hope for anyone touched by cancer.
Watch Megan’s video to find out more about her story:
How a single mole changed Megan’s life forever
The shocking way her melanoma returned years later
Why one pill changed everything
The part of cancer care no one told her about
Megan’s heartfelt advice on health and self-acceptance
Name: Megan S.
Age at Diagnosis:
28
Diagnosis:
Melanoma
Staging:
Stage 1A (2018); Stage 4 (2023)
Symptoms:
New mole
Cough
Wheezing
Chest pain
Back pain
Treatments:
Surgeries: mole excision, reconstructive surgery, thoracic surgery
Immunotherapy
Targeted therapy: BRAF inhibitors, MEK inhibitors
Radiation therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
