Laura’s Stage 4 ALK+ Lung Cancer Experience Balances Treatment and Quality of Life
For months, Laura managed a stubborn cough, but with a quiet pull from her intuition that something was not right. In South Carolina, where she ran a small handmade jewelry business, she also noticed deep fatigue and strange joint pain creeping into her days. These symptoms appeared slowly and at different times, so no clear connection was made. Intervention would come when, during a routine physical, she mentioned this year-long cough. A chest X-ray and CT scan were ordered right away and that’s when the truth emerged: a six-centimeter tumor and a diagnosis of stage 4 ALK-positive lung cancer.
Interviewed by: Carly Knowlton Edited by: Chris Sanchez
Laura’s treatment for ALK-positive lung cancer initially focused on targeted therapies called tyrosine kinase inhibitors or TKIs. Laura cycled through several options, always balancing side effects against her quality of life. “If this is what my life is going to be like… it isn’t worth it,” she recalls, after struggling with the severe side effects of her first TKI. (Editor’s Note: TKIs work by blocking tyrosine kinases, enzymes that may be too active or may be found at high levels in some types of cancer cells. Blocking tyrosine kinases may help keep cancer cells from growing.)
Encouraged by her physician to prioritize what mattered to her, Laura took breaks, joined a clinical trial, and ultimately found a better fit with her current medication. “Patients should advocate for what works best; if side effects or treatments aren’t acceptable, speak with your doctor about changing things,” she says.
Laura’s ALK-positive lung cancer experience fundamentally shifted her identity and outlook. She speaks candidly about the grief and recalibration forced by advanced cancer, the evolving sense of self, and the acceptance of cancer as a chronic condition, if a life-defining one. Daily life is different, but Laura leans on support groups and prioritizes humor and connection.
“Given any type of tragedy, you either decide to learn from it, rebuild from it, or let it take you down,” Laura says. “And I think more of us decide not to let it take us down.”
Watch Laura’s video above, and scroll down to read through her edited interview transcript for more on:
Why you should advocate for thorough diagnostics if your symptoms persist, regardless of smoking history or age
How quality of life is essential; it’s valid to adjust or pause treatment if side effects outweigh benefits
How proactive support in the form of family, community, mental health, and provider relationships can transform even the hardest experiences
Why humor, connection, and redefining identity are key to sustaining hope and finding meaning
How Laura has learned to accept new limitations, embrace choice, and support others through lung cancer community groups
Name: Laura R.
Age at Diagnosis:
37
Diagnosis:
Non-Small Cell Lung Cancer (NSCLC)
Staging:
Stage 4
Mutation:
ALK
Symptoms:
Persistent cough
Fatigue
Bone pain
Treatments:
Targeted therapies: tyrosine kinase inhibitors (TKIs), including through a clinical trial
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I live in South Carolina. I was diagnosed in May of 2023 with stage 4 non-small cell ALK-positive lung cancer.
It’s changed a little bit since my diagnosis, but before that, I owned a small handmade jewelry business. I still own it, but I do that part-time now. What I do for fun is horseback riding. I don’t get to do it as much as I’d like, but hopefully more so in the future now.
I try really hard to be funny. Whether or not I am, I don’t know, but I think I’m funny.
My first symptoms and red flags
It was hard because I overworked myself. I was very focused on work. I should have gone in sooner.
The first sign was a cough that wouldn’t go away. I’d been coughing for almost a full year, but it wasn’t bad. It was just a little bit in the morning. Sometimes during the day, I wouldn’t cough at all. It was just in the morning. Sometimes the cough would produce phlegm, sometimes it wouldn’t. Some days it got better, other days it got worse. It was a persistent cough that didn’t go away.
Over the years before my diagnosis, I became more fatigued, but gradually. I was approaching my late 30s, and I wondered, “Am I just getting old? Why am I tired all the time?” I also had a lot of joint issues, not debilitating, but pains in my wrist. I complained to my doctor, and she prescribed arthritis cream. I was in my 30s and wondered if that was normal. She said, “Yeah, it happens to some people.”
Those were the main symptoms: joint pain, fatigue, but the biggest one was the cough. I was lucky to have a cough because where the tumor was located, it was close to a bronchial opening, so the tumor caused almost an obstruction. I was trying to cough it out, but you can’t cough out a tumor.
I didn’t go to the doctor immediately. I lived with it, hoping it would go away. I was self-medicating. I’d always had allergies, so I kept taking allergy medications, switching between Allegra and others, but nothing helped.
At my yearly checkup, I talked about arthritis and back pain. I brought up the cough, and the doctor was concerned. She asked if I was from a region where there are common fungal infections in the lungs. I wasn’t. She thought a cough that long was unusual, so she sent me for a chest X-ray at the VA. The X-ray found a tiny nodule a few millimeters across. They said it’s common with service members and ordered a CT scan to monitor the size. After the CT scan, instead of a six-millimeter nodule, it turned into a six-centimeter mass, which is very large. That started the diagnosis process in May 2023.
Finding my care team
My first care team was a whirlwind, but I have healthcare through the VA, so it was all covered.
They told me to see a pulmonologist. I was referred to Dr. Nicole Tanner at MUSC in Charleston. She is amazing. She made me feel comfortable. She showed me the CT scan and explained the next steps with biopsy and diagnosis.
The VA is attached to MUSC, so I’ve received excellent care, and everything moved quickly. Waiting two days for a phone call felt long at the time, but the diagnosis from primary care to biopsy was within two weeks. I was given a pulmonologist and an oncologist.
At the VA, you can get a second opinion, so I got recommendations for a local thoracic oncologist. I also researched and found a specific ALK-positive specialist.
My reaction to my diagnosis
The news was given to me over the phone, which was fine. After the CT scan, my primary care doctor called quickly and said, “We’re going to do this.” I asked, “Why do I need to see an oncologist? Could this tumor be something else?” She said, “No, unfortunately, it’s cancer.”
It took me by surprise. I Googled possibilities, but didn’t think it was cancer. I said, “There’s absolutely no way.”
It took me a long time to believe it. I don’t even know when I fully recognized I had lung cancer.
I am a nonsmoker. We all went through COVID and had coping mechanisms, but that was rare and not a daily thing. Cigarette smoke? No.
Being diagnosed and treated for cancer as a woman in your late 30s is intense emotionally, hormonally, and mentally, because you’re aging and things are changing.
You think about childbirth, not being young anymore, friends with kids… it’s difficult to cope with all at once. I had to slow down after the diagnosis. It’s way too much for anybody to take on by themselves.
You have cancer, you can’t do this or that, you have to take medication, and then side effects prevent you from doing things. It’s too much.
Genetic testing impacted my treatment options
We waited to get my PET scan results to stage me.
Since I wasn’t presenting as poorly as some, maybe because of my age, there was no need to start chemo until genetic results came back. The genetic results [ALK positive] gave good news; there was a targeted therapy for me.
I started first-line therapy with my first TKI two years ago. Now I’m on my third.
Surgery isn’t an option, since my cancer is stage 4 metastatic; it has spread to different areas. Some elect to have surgery, but for me, surgery isn’t curative, so it’s not an option.
My experience with TKIs, their impact, and side effects
The first TKI wore me down. I lasted about a year, but couldn’t handle the side effects physically or mentally. I felt worse than before I had cancer, and I almost gave up. My specialist said that no one would force me to take it, which was freeing. I took a break, but the cancer grew back.
Then Dr. Lynn at Mass General told me about a clinical trial with cutting-edge medication. It’s rigorously tested and the latest available. I got on the trial, but my liver couldn’t tolerate the medication, which is common. I had some side effects from the clinical trial drug, but it was much better than the first drug. I loved the medication and was sad to stop.
I stopped and started my third TKI a month ago, and I’m doing pretty well so far. Hopefully, this one will stick. The drug I’m on now has minimal side effects. I increased my dose after consulting with my doctor because I had no side effects and wanted to see if the higher dose would hold.
There’s no end to it; treatment keeps going. TKIs are not a cure but must be taken until they stop working. Monitoring is constant with CT scans every three months to check tumor size. If it stays the same, that’s good news. Residual cells never go away. Researchers are working on vaccines and cures, but it’s a long process.
I kept my care at Duke University Hospital, where the clinical trial was run and supervised by an ALK-positive specialist. Instead of returning to Charleston, I now see the ALK specialist at Duke.
My current work and support system
I’m doing jewelry part-time and have stepped back a lot. Having my own business is great because I can return when I want. The connections are still there, just fewer. I pick when to work.
I have a lot of friends. My recently made friend, Emily, now lives in Washington state and has helped a lot. My sister, my only family member, left before, and our relationship wasn’t good. The diagnosis didn’t improve things, but we worked hard to rebuild our relationship, and it’s gotten much better. That’s one good thing about cancer; it brought my sister and me closer.
The impact of cancer on my daily life
The first year was the hardest; the second year was also difficult, mostly in finding a new normal. It’s like grieving loss, scrambling to survive, and rebuilding. It’s completely overwhelming, but you either do it or you don’t.
I have to do it. With any tragedy, you either learn and rebuild, or let it take you down. Most decide not to be taken down.
The hardest moment I’ve faced so far was deciding to stop the first TKI. I was going through a lot, dealing with side effects, life changes, and reflecting on a year of medication with a worse quality of life. I’d basically given up and stopped medication.
When I spoke to Dr. Lynn, she said, “What are you doing? You don’t have to take it.” I didn’t know that.
I’m fortunate to have supportive friends willing to help whenever I need it. Mental health is very important for people with this diagnosis since it’s life-changing. Some people aren’t sure what to do. There are many who care and want you to fight.
My identity has completely changed because I will always carry cancer; there is no cure. I think about death every day, almost like a built-in ticking time bomb. Not that I expect to die tomorrow, but it’s always there. At the same time, I appreciate life and can do what I want, such as take medication or not.
Therapy experience and my quality of life
I was already in therapy before the diagnosis and continued afterward.
I learned to speak up and eventually switched therapists, which was the best decision. If you don’t like your therapist or aren’t getting better, get another one.
Quality of life is often overlooked in cancer care, but it’s crucial that patients aren’t tortured to death. For me, quality is more important than length of life.
Everyone’s priorities are different. Some want to live at any cost. I think this changes how care should be delivered.
If you don’t like your treatment, talk to your oncologist. There are usually other options.
Advocacy is vital because your life won’t get better until you ask for change.
My advice for others
You’re not alone.
One of the best things I did was find a support group online. A friend recommended it, and connecting with others who understand made a big difference.
We all go through similar things, though differently. Having that support group has helped a lot over the past two years.
Symptoms: Pelvic pain and discomfort, bladder issues related to pelvic tumors, incontinence, pain in the lower back and hip Treatments: Chemotherapy, immunotherapy, radiation therapy, targeted therapy (lorlatinib)
Drea Finds Identity and Strength with Stage 4 ROS1+ Lung Cancer
Drea is a video journalist who was only 26 when she was diagnosed with stage 4 ROS1+ lung cancer. It came as quite a shock. She never imagined that a physically active, young non-smoker who had never had any health issues, could ever get cancer.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Drea’s story began in early 2023. She began to experience some strange symptoms, including a swollen ankle from an unexplained deep vein thrombosis or blood clot, odd bruising, extreme weight loss, and persistent shortness of breath. She went to the ER several times, had some urgent care visits, and also saw specialists, but was reassured that what she was experiencing was due to stress or other such causes. She started to doubt herself even as her health began to deteriorate. Eventually, she succeeded in having a CT scan done. It revealed a large mass in her lung. Further tests confirmed that she had stage 4 non-small cell lung cancer that had already spread to multiple locations.
Drea’s experience has convinced her that self-advocacy is key. She explains why we always need to trust our instincts. “If you feel deep inside that something’s wrong, keep pushing,” she advises. Because she was persistent, she eventually had comprehensive biomarker testing, which identified the ROS1 mutation. This discovery opened the door to life-extending targeted therapies.
Living with stage 4 ROS1+ lung cancer has helped Drea redefine survivorship. It’s not just about existing; it’s about living fully. The targeted therapies she’s having allow her to enjoy climbing, biking, beach days, and gardening. She’s open and frank about her ups and downs, and acknowledges the chaos and struggle of having to navigate cancer in her 20s. But she’s decided to treat each day as an opportunity by focusing on what she can control rather than agonizing over the “what-ifs.”
Cancer didn’t strip Drea of her identity. Instead, it’s added new layers. She’s not just a video journalist anymore; she’s also an advocate, connector, and source of hope for others. She shares her story openly to help more people realize that “anyone with lungs can get lung cancer,” and, by doing so, to break the stigma that lung cancer is a smoker’s disease.
Drea urges others to be their own best advocate, seek second opinions, push for biomarker testing, link up with patient groups for support, and, most importantly, give themselves grace. Watch her video for more on:
Her diagnosis at such a young age and how she became her own health advocate against all odds
Drea’s struggle to be heard before her stage 4 ROS1+ lung cancer diagnosis
How targeted therapies gave her her life back
Why Drea names her cancer ‘Carl’, and how humor helps her thrive
The advice she offers young people who don’t feel heard by doctors
Scroll down for the transcript of Drea’s video interview!
Name: Drea C.
Age at Diagnosis:
26
Diagnosis:
Non-Small Cell Lung Cancer
Stage:
Stage 4
Mutation:
ROS1
Symptoms:
Swollen ankle resulting from a deep vein thrombosis or blood clot
Mysterious bruising
Extreme weight loss
Persistent shortness of breath
Rattling sound coming from the throat while breathing
Treatments:
Radiation therapy
Chemotherapy
Targeted therapies
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
My name is Drea. I was diagnosed with stage 4 non-small cell lung cancer at 26.
When I first felt something was wrong
I first started feeling off at the beginning of 2023. It began with the DVT, which is a blood clot that resulted in a swollen ankle, and at the time, it didn’t make sense to me because there were no known injuries; I hadn’t fallen, I didn’t trip or anything. I had gone to urgent care, which then sent me to the ER, and then they discovered that it was for sure a blood clot, so they put me on thinners. Following that, I kept having these sorts of mysterious symptoms, among them just bruising up and down my body, and extreme weight loss. It felt like I was in a pit of despair. I felt like there was something off, and I don’t know how to describe that feeling. And I think throughout the process of 4 or 5 months, the symptom that started scaring me the most was the shortness of breath. I think by the time they came around, I had this really weird, awful, rattling sound coming from my throat. Google scared me when I googled that one up. The entire five months of these symptoms, I had gone to urgent care a couple of times, I had gone to the ER, I had seen a specialist, and I kept getting sort of brushed off, getting told, “You’re young, you’re probably just needing a little more rest, you’re probably just tired or stressed.” Cancer or any sort of serious disease was never really mentioned. But then I remember in May, going back to that same urgent care that months earlier had prescribed me an inhaler for the shortness of breath, that same urgent care doctor had finally ordered a CT scan.
He gave me a call, and there was a sort of newfound sense of urgency in his voice. He told me I needed to go to the E.R. immediately. There was a mass that was found in the scan, and it did not look good. So I just drove myself over across the street and got admitted to the E.R. That was my first hospital visit that resulted in, I think it was like a 7 or 8 day stay.
They ran a swath of tests. My blood counts came back, not looking great, but nothing to signal cancer. But it was the imaging that scared doctors the most. They had found this huge lemon-sized mass on my right upper lobe, and sort of nodules scattered across it. They ended up doing a PET scan, and that’s when they found that there was also cancer up and down my spine and pelvis, and not even my noggin was spared, unfortunately. So they knew right away that this was serious and that it was likely cancer. And so I think it was maybe on day 4 or 5 of that hospital stay that they got me in for a bronchoscopy, and then I got the news.
The moment everything changed
Getting told that I had lung cancer at 26, as a never-smoker, never picked up a cigarette, or none of that, was shocking. I did not understand how that could even be possible. I never knew that non-smokers got lung cancer. My dad died of lung cancer in his 40s. He was a very heavy smoker, so I doubt he had any sort of mutations. But because of his lung cancer death, I had made the choice early on that I would never pick up a cigarette. I wouldn’t vape because I saw what it did to others. But then to find out that that didn’t save me from lung cancer was a shock.
Ten out of ten, I would not recommend getting your cancer diagnosis in the E.R. It is awful. So take that with you wherever you go. Try to establish care with the primary care physician who knows you and your history, because getting my diagnosis in the E.R. was not pleasant, to say the least. I think I was there anywhere between 5 and 7 days. It was complicated because after I got that diagnosis, I got discharged. I got sent home with no oxygen for some weird reason. Here’s a metastatic lung cancer patient who has cancer across both lungs, up and down the spine, in her noggin, and she still got sent home with no oxygen. And I just didn’t have anyone to check up on me in the way that I would imagine others would have if they didn’t get their diagnosis in the E.R.. It wasn’t until my at-home nurse noticed that my breathing was getting progressively worse, and she told me to head back to the E.R., that they found that my situation was getting even worse. And so the second time I got admitted, I had to get an emergency blood transfusion and start traditional chemo right away, the very next day, and that was the day that my oncologist told me, This doesn’t work.
We might have to put you in hospice. Because at this point, we had not gotten the biomarker testing results back. And so that was when things finally hit me that this was serious, that I don’t have my youth, I don’t have my young age to rely on, and that something needs to happen. And so I remember lying in bed with my mom by my side at this point, just panicking internally. And that was when I decided to just start calling around to see if there was a comprehensive cancer center that would take me right away, because I did not want to be put in hospice.
I took my health into my own hands
Hearing the word hospice just rattled me to my core. I knew that I had to do something to get myself from getting buried six feet under, and so I started crawling around trying to see what the next best option was. What is an option that is more familiar with these rare types of lung cancers? At the time, I didn’t know that I had ROS1 because we were still waiting on biomarker testing. But the oncologist at the time said that it was very likely, given the fact that I never smoked and I’m so young. I started calling around to this one major comprehensive cancer center in Florida. It was right after that conversation with the oncologist, and I think the call rep could hear the shakiness in my voice because I was trying to talk through tears, just trying to see if there was any sort of openings in the immediate couple of weeks. After all, things were serious, and as soon as I was discharged, I needed to seek care elsewhere to see what other options I had. Luckily, the lady found me in an appointment, and I was able to get in on time. I think it was two weeks later, and that’s how I ended up at my second hospital.
Learning my biomarker
I was actually very lucky that my oncologist at the time knew that there was a specific subtype of lung cancers that tend to impact younger nonsmokers. And he happened to be working that day and saw my case, and he ordered comprehensive biomarker testing right away. I think I got the results after just a couple of weeks. I consider myself very lucky because if it weren’t for biomarker testing, I don’t think I’d be here today.
It allowed me to take targeted therapies, which have been shown to work well with my specific type of cancer. Targeted therapies in general have truly revolutionized what it means to be metastatic and living with lung cancer. And it’s just unfortunate that there are people across this country, across the globe, who are not afforded that option because they’re doctors, or the hospital care system just may not be aware that comprehensive biomarker testing is a thing.
I was kind of all over the place, still trying to process the news. But when my oncologist at the time mentioned that comprehensive biomarker testing could open the window to newer forms of treatments, I was like, all right, let’s do it. And then when I finally got the news and I saw that I had ROS1, which tends to impact, I think it’s like 2 to 3% of all non-small cell lung cancer cases, I was like, great, so here’s to celebrating having a mutation, I guess, let’s do it. It was an interesting, interesting time. A couple of weeks later, my brother was doing some research on my behalf, and he found this incredible nonprofit advocacy group that does a lot to build community and share resources for people with ROS1. They’re called the Ross Wonders, and they have just been a godsend to me. They showed me how to be a better advocate for myself, they’ve connected me with those long-term cancer survivors, and they’ve shown me that you can still live a long and fulfilling life, although you have metastatic lung cancer.
My treatment plan
As soon as we found out that I had ROS1, it became very apparent that we had a better option than that platinum-based chemo that I had already gotten one round of. At the time, I had also gotten radiation. But there has been such incredible research out there about these targeted therapies that the best course of action at that time was to just stop chemo and go on a TKI pill, and so I was put on my first drug.
I got about three years of pretty great response, pretty great quality of life on what I like to call my beloved drug, and it was very good to me; it kept my cancer under control, and I was able to wrangle my control. And I was able to wrangle my life back from cancer in a way that I never envisioned, because I knew nothing about targeted therapies and what sort of quality of life that might have meant. It was great for me for about three years. Unfortunately, earlier this year, I had to switch to another drug, but thankfully, things have been going pretty well on this second TKI as well.
It’s gotten a pretty good control on some of the new lesions that have popped up, and I’m still able to live a relatively normal life. I have a couple of annoying symptoms, but they’re still manageable.
Everyone’s different. Everyone’s going to react differently to each drug. We may have the same cancer with the same lesions and other comorbidities, but we may still react differently to whatever drug we’re taking. I consider myself pretty blessed because I seem to be a fairly good responder to TKIs. I don’t deal with any sort of debilitating symptoms. I know that that’s not the case for a lot of other ROS1ers; unfortunately, I wish it were. But so far, everything that’s been thrown at me has been manageable. I’ve been able to get back to my old life. I climb a lot, I bike, I’m able to take my dog on long walks, I’m able to be out in the sun and garden, I’m a very big beach bum, true Floridian. And I have TKIs to thank for that.
How I feel about clinical trials
I will say a lot of people tend to fear the idea of clinical trials because they like to think, “I don’t want to be a lab rat, I don’t know what sort of outcomes I’m going to see if I join a clinical trial studying a very new drug.”
Editor’s Note: In cancer trials, no one is given only a sugar pill when an effective standard treatment exists. Instead, participants receive either the current standard-of-care treatment or the standard-of-care plus a new therapy being studied, and everyone is closely monitored for safety and benefit. Many of the oncologists we interview describe cancer clinical trials as "getting tomorrow's medicine today."
There are a lot of incredible treatments out there that are revolutionizing what it means to live with these sorts of subtypes of lung cancer, whether it’s ALK, EGFR, or ROS1, like what I have. These therapies are exciting; they’ve shown a lot of great promise. A lot of times, these drugs are being tested for years in a clinical trial setting, and there is early data that you can glean from and decide if that’s a good option for you at the time. If I’m ever at a point where I do run out of TKIs, I will gladly volunteer for science and to help the next lung cancer patient get access to even better drugs in the future.
How I’m navigating my diagnosis and being young
Navigating cancer in your 20s and 30s is incredibly messy; it is chaotic. It is a roller coaster you go through, so many loops, it’s complicated.
I’m not going to deny that, it’s not an easy feat. I’m metastatic, which has caused me to grow up in a lot of different ways. For people who have been diagnosed at earlier stages, it is life-changing. Just because treatment wraps up and your hair grows back and you’re in remission or you’re cured, does not mean that your life goes back to normal or that you’re even the same person you were the day that you were diagnosed. So it is complicated, and I try to remind every cancer patient that I meet to just give themselves grace. It is a work in progress. I am three years out, three years into survivorship, and I am still learning what it means to live with metastatic cancer, and to live each day as if I’m living, not as if I’m dying.
Honestly, I try to just make the most out of whatever time I have left. If it is three months, if it is three years, if it is six years. Let’s pray for six years, I will take six years happily. I like to treat every day like a new day.
And if I’m having a crappy day or just the type of day where you just don’t want to get out of bed and you’re just stuck doom scrolling on your phone, I try to remind myself that tomorrow is a new day.
I used to just get stuck on all the what-ifs. Like, what if I spoke up sooner? What if I pushed for answers sooner? Would my life have been different? Would my cancer have been when it was stage 2 or 3 instead of stage 4? But at the end of the day, what does that do for you? What are you thinking about, the crappy cards that you were dealt day after day? What does that do for you? And so I try to just remind myself to focus on the things that I can control. And that is what my life moving forward is going to look like. Whether that’s for three months, three years, or however long, I know that I just want to make the most of each and every day.
“Hope” is a complicated word for me
I am cautiously optimistic that I will be able to get a good chunk of time out of whatever TKI lines are currently available. And I hope that I will be able to respond well to those therapies until the next best thing comes out.
And there are a lot of really new and exciting TKI drugs currently being studied in clinical trial settings. I try to talk to my cancer from time to time and just be like, “Oh, Carl, can you give me three years of peace, until that next best thing comes out?” I know that next year there’s going to be another TKI out in the market, or at least that’s what my oncologist has said, and what we hope is that it’s going to get approved by the FDA. I try to count my blessings every day and try to beg Carl from time to time to just behave for a little longer, and just go from there.
I like to view my cancer as an insidious roommate that just does not pay rent, that has been uninvited. What is the most awful name you could give that imaginary roommate? And the first name that came to mind is Carl, so his name is Carl.
Carl used to be lemon-sized, around five centimeters. I think he’s down to two centimeters, and he’s been stable.
He’s been behaving this way this whole time. It’s just that I get random lesions outside of the primary tumor that pop up, but for the most part, he’s been good.
What I want others to know
My last piece of advice would just be not to take a lot of stock in survival statistics or prognosis. My first oncologist told me I likely had just three months to live; lo and behold, I’m still here. Three years later, and I’m still going strong, I’m still kicking.
And I hear it all the time in the lung cancer community, fellow patients who have been given months to live, a year to live, and they’re still doing well. And while that may not be true for everyone, there is reason to remain cautiously optimistic because newer therapies are coming out every couple of years, and science is advancing in a lot of incredible ways.
I want people to know that anyone with lungs can get lung cancer. You do not have to be smoking eight packs of cigarettes a day to get lung cancer. I was 26 when I was diagnosed, and I have not once picked up a cigarette or a vape or any of that stuff, but I still got diagnosed with stage four non-small cell lung cancer. It is something that is happening to more and more young people, year after year, and we don’t know why. It’s terrifying.
If you’re feeling out of breath, if you’re seeing a lot of troubling symptoms that don’t make sense, whether it’s back pain and then this weird rattling sound coming from your throat, and you’re getting told by your doctors you’re fine, it’s probably pneumonia or asthma, here’s an inhaler, don’t listen to them. Seek better care and keep pushing for answers, because lung cancer cases amongst nonsmokers are going up. And at the end of the day, you’re going to be your own best advocate.
Biomarker Testing Gave Lysa New Hope with Stage 4 ROS1+ Lung Cancer
I was 40 years old, very busy, still raising my kids, and working and going to school at the same time when I was diagnosed with stage 4 ROS1+ lung cancer. Lysa’s experience highlights her resilience and serves as a prime example of what self-advocacy can lead–in her case, lead to a new therapy.
At 40, she experienced severe mid-back pain that she and doctors initially thought was just a pulled muscle. Later, however, her symptoms worsened, leading to a shocking diagnosis: lung cancer that had already spread to her spine.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Though her lung cancer was initially responsive to chemotherapy, Lysa was determined to learn more about it. This pushed her to reach out to fellow lung cancer patients on online patient communities. She also learned about biomarker testing, which empowered her to seek a second opinion, ultimately undergoing surgery solely to obtain tissue for comprehensive biomarker analysis. The result? She discovered she was positive for the ROS1 mutation. This qualified her for targeted therapy that significantly improved her quality of life.
When her non-small cell lung cancer progressed, Lysa didn’t settle. She advocated for herself again, enrolling in a clinical trial that has kept her stable. Thanks to targeted therapy and clinical trials, she’s celebrated many milestones, including her daughter’s graduations and the birth of her first grandson, as well as other important moments with family and friends.
Lysa’s stage 4 ROS1+ lung cancer experience shows how critical biomarker testing and clinical trials are in expanding treatment options. Her story is a testament to the power of self-advocacy, community support, and the importance of never giving up on seeking better care.
Watch Lysa’s video and read her story below to:
Find out how her back pain revealed her life-changing diagnosis
Learn why biomarker testing became Lysa’s game-changer
Discover how a targeted therapy and a clinical trial gave her more time with her loved ones
See how Lysa’s self-advocacy with ROS1ders changed her stage 4 ROS1+ lung cancer care
Meet the woman who thrives beyond her diagnosis
Name: Lysa B.
Age at Diagnosis:
40
Diagnosis:
Non-Small Cell Lung Cancer (NSCLC)
Staging:
Stage 4
Mutation:
ROS1
Symptom:
Severe but intermittent back pain
Treatments:
Chemotherapy
Radiation therapy
Targeted therapy, including through a clinical trial
Surgeries: lung resection, metastatic spine tumor surgery
Thank you to Nuvalent for supporting our patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
You think you’re doing what you can to take care of yourself. I quickly learned that none of that really matters. If you have lungs, you can get lung cancer.
Lysa B. – Lung cancer patient
About Me
Hi, I’m Lysa.
I was diagnosed with stage 4 non-small cell lung cancer with an ROS1 mutation.
When I First Noticed That Something Was Wrong
I had just graduated from college. I was 40 years old, very busy, still raising my kids, and working and going to school at the same time.
I started having back pain. It wasn’t a typical lower back pain that you’d get by straining yourself doing something, though that’s what I kept telling myself. It was a little bit higher, right in the middle of my back.
My husband and I took our daughter to California for a vacation, and we visited SeaWorld in Disneyland. There were two nights when I would lie down, the pain was so bad that I felt like I couldn’t breathe right, and I couldn’t sleep. My husband said, “We have to go to the E.R., we have to figure out what’s going on.”
We went to the E.R. around midnight. There, they were concerned about my kidneys because of the back pain. But my kidneys were fine, so they thought I’d just pulled a muscle. They gave me a few muscle relaxers and pain medicines to get me through the weekend, and they told me, “Follow up with your doctor when you get home.” And the next day we went to Disneyland for 12 hours.
I agreed that I must have just pulled a muscle. Everything seemed to be fine. I was 40. I was healthy. I was a runner. I was in great shape at the time, or so I thought. So you shouldn’t ever believe that cancer is not on your radar.
The pain was intermittent, so I was able to ignore it and push through. I was taking a lot more Tylenol at that point, icing the area, and getting massages. But it wasn’t getting better.
I went on a vacation to see my family in Kentucky, and the pain got so bad coming home from the airport. I was traveling alone, and I remember calling my mom, crying, and telling her, “I can’t even walk through the airport right now.” She went, “Get a wheelchair, just get home. We’ll take care of it.”
The next morning, we went to the E.R. again, this time to an E.R. near where we lived. They did multiple tests, a CT, a full MRI of my entire spine to try and see where the pain was coming from, as well as a chest X-ray.
I was in great shape at the time, or so I thought. So you shouldn’t ever believe that cancer is not on your radar.
Lysa B. – Lung cancer patient
The Moment Everything Changed
Several hours later, the E.R. doctor came in and told us, “You have to sit down. It appears that you have stage 4 lung cancer that’s already spread to your spine.”
I had just lost a friend to lung cancer about five months before that, and she had only been 43. So I immediately thought, “Oh my God. Who’s going to raise my kids?” My son was 19, but he still needed me. My daughter was 11.
You think you’re doing what you can to take care of yourself. I quickly learned that none of that really matters. If you have lungs, you can get lung cancer. Unfortunately, sometimes you’re just dealt a crappy hand.
How I Learned About Biomarker Testing
Right after I was diagnosed, I found an online forum where I started talking to other patients. Mostly, I just connected with them and tried to seek support. And through that forum, I learned so much about lung cancer.
It’s not one disease. You don’t just treat it one way. And there are biomarkers, which are proteins that drive your cancer to grow. They are specific to certain lung cancers, and they typically tend to be in younger women, mostly under 50.
I did talk to my oncologist about it, but I was having a great response to chemo at the time. So she just said, “When the time comes, we’ll look into that.” I was okay with that for a while, and it wasn’t until I had progression about 15 months later that we decided to try and do another biopsy to get enough tissue to do biomarker testing.
At that point, my tumor had a lot of scar tissue around it. It was in a hard-to-access spot. We had done two needle biopsies through my lung, which were inconclusive and didn’t have enough tumor DNA actually to tell if there were any biomarkers or not. So my oncologist wanted to try another chemotherapy, and at that point I said, “There’s got to be something better than this.” And I switched oncologists.
Learning I was ROS1+ and Taking the Only Treatment Option Available Then
Within a couple of weeks, I was seeing a new doctor, Dr. Vogelsang. He pushed for me, and that validation helped me realize that this man was going to help me do whatever I needed to do for however long I wanted to do it.
At the time, it took several weeks to get my results back. It was stressful, and I was trying to be hopeful. Plus, I was recovering from surgery.
My phone rang at 10 p.m., and I don’t normally answer my phone if I don’t know who’s calling me, but I answered, and it was Dr. Vogelsang. He said, “We’ve got great news, your results are in. And you’re ROS1-positive.”
He was super excited about it, and I was too. I knew that meant I was eligible for targeted therapy. I wouldn’t have to do chemo anymore. So it was great. It was literally a game-changer for me.
By the time I found out what my biomarker was, it was 2013. I had already been diagnosed with and living with lung cancer for 18 months. I started getting nervous around that time; it was like I was feeling I was on borrowed time. I wondered when it was going to quit working.
I was eligible for targeted therapy. I wouldn’t have to do chemo anymore… It was literally a game-changer for me.
Lysa B. – Lung cancer patient
I Joined a Clinical Trial When My Stage 4 ROS1+ Cancer Progressed
We added chemo to my targeted therapy in the hope that it would get me at least to the end of that year, seven or eight months away, before I might start on that drug. Well, I remained stable with that combination for another five years, so I was able to stay on my first targeted therapy for ten years.
By the time I progressed again after those five years, I had a new biopsy. I did have new metastases in places I’d never had before, and it seemed to be fairly aggressive. It went from nothing on a scan to not significant to more than doubling in size two months afterward. I knew we had to do something quickly.
We did a biopsy on my 50th birthday. That was fun. And based on those results, I decided to go on a clinical trial. So in June 2023, just over two years ago, I started a phase one clinical trial that I had to travel to Tennessee for.
I’m still in that trial. I actually went again just last week. I just got my scan results back, and I’m still stable. So I’m extremely happy about that.
I feel pretty good on this drug, which is nice. And I don’t have to do chemo anymore. Because of this drug, I’ve lived long enough to see my first grandson. The drug is in pill form. I’m able to have my scans at home.
Targeted Therapy Has Changed My Quality of Life for the Better
When I was diagnosed, my youngest was 11, and she was in fifth grade. Honestly, my first goal was to see her graduate from high school. I wanted to give her that much, at least, to get her there. Of course, I was the loud lady at her graduation. I was so excited and crying and bawling.
I’ve since gotten to see her graduate from college. I have just had our first grandson this year. And my son was 19; he was older, but he still needed some help, and I have been able to see him flourish and find his way in this world.
My husband and I love to travel and eat. I have a great friend group here. We do trivia every week. My parents live two miles from me; I just hung out with my mom all day the other day.
I know I’m lucky that I can do those things. I’ve always been such an on-the-go person, the type who has to take care of everything right now. I can’t go to bed till the dishes are done, that sort of thing. I need structure, and I might have been a little extreme.
Now, I don’t care if there are dishes in my sink. I try not to let external things get me down. And I focus on trying to find the joy in every day.
My biggest happiness is when I’m with my family and my dogs. I love my dogs.
I try not to let external things get me down. And I focus on trying to find the joy in every day.
Lysa B. – Lung cancer patient
Anyone With Lungs Can Get Lung Cancer
One of the first questions many people ask you when you tell them you have lung cancer is, “Did you smoke?” It used to make me angry, because it felt accusatory. But I really think when people ask that question, if they’re nonsmokers, they’re trying to be like, “Oh, well, that’s why you got it.”
I honestly don’t think they come from a bad place, but it makes you feel bad, like you have to defend yourself. My grandmother died of lung cancer, and she was a smoker her whole life. Can we blame her for her death?
Everyone deserves access to care. We have lung cancer. It doesn’t matter how we got it. And there are many risk factors out there, so many that we don’t even know how to correlate them, though we do know that they contribute to lung cancer.
I have friends who are vegetarians, yoga instructors, lifelong runners, and so on. People who thought they did all the right things. And yet we still got lung cancer. I still ended up getting stage 4 ROS1+ lung cancer.
Cancer doesn’t discriminate.
You do not have to be alone.
Lysa B. – Lung cancer patient
My Advice to Others
There are patient groups for most of these biomarkers. There are maybe a dozen online. Many of them have websites. You can look them up and join them. You do not have to be alone.
They are a huge source of not only support but also knowledge. Like the ROS1ders in particular. It is scientifically vetted by researchers, as well as all of our information about the drug options. What works for us, what doesn’t, how to deal with side effects. There are patient stories on there. There is a large community out there that many people might not know exists. I am proud to be part of ROS1ders.
These patient groups aren’t just for other patients. We’re seen and invited to medical conferences now. Doctors and researchers collaborate with these groups to do better for the people in our community. So please reach out to them if you have a biomarker. It’s so important.
Special thanks again to Nuvalent for its support of our independent patient education content. The Patient Story retains full editorial control.
Choosing Life on Her Terms: Pippa’s Stage 4 Vulvar Cancer Story
Pippa shares her stage 4 vulvar cancer experience. Diagnosed in January 2023, her early symptoms were subtle, including persistent soreness and discomfort that eluded quick fixes. From the start, she leaned into her intuition, seeking answers and refusing to dismiss what her body was telling her. Eventually, she was diagnosed with stage 1 vulvar cancer — a diagnosis that shifted to stage 3 and, ultimately, stage 4 once it was found to have spread.
Interviewed by: Carly Knowlton Edited by: Chris Sanchez
Soon, Pippa had to deal with surgeries, including a total pelvic exenteration. Repeated hospitalizations and side effects of her vulvar cancer treatment took their toll. She describes physical discomfort, mental exhaustion, and adjustments to routines, but always underscores how grateful she is to have received unwavering support from her husband, family and friends, and her employer as well.
Pippa was at times overwhelmed by the treatments for her rare cancer, especially when options dwindled after recurrence. Despite the recommendation for more intensive chemotherapy, Pippa chose quality of life over harsh intervention, a defining moment in her experience. New routines emerged, built on patience and realistic expectations. She learned to walk again, embraced ostomy care, and shifted to slower, more deliberate daily rhythms.
Beyond her treatments, Pippa also works to raise awareness for vulvar cancer. She helps other women navigate early symptoms and speaks openly about the mental and emotional challenges of living with such a diagnosis. She emphasizes that “there is life with cancer” and that advocacy, community, and small joys, be they dog walks, time spent with loved ones, or moments in nature, offer resilience through uncertainty.
Pippa’s stage 4 vulvar cancer experience helps rewrite what it means to live fully with cancer and reminds us of the power in listening to one’s body and advocating for care. Watch her video and read through her transcript below. You’ll learn about:
Trusting your instincts and advocating for yourself, because persistent discomfort deserves immediate attention
How the support of loved ones, community, and compassionate medical professionals dramatically impacts mental and emotional well-being
How treatment exhaustion and physical limitations demand patience and realistic expectations; routine tasks become part of recovery and adaptation
The meaning and dignity to be found in living with cancer
How Pippa transformed her experience into advocacy, raising awareness for vulvar and vaginal cancers and empowering others to seek care and speak up
Name: Pippa S.
Age at Diagnosis:
47
Diagnosis:
Vulvar Cancer (Metastatic)
Staging:
Initially Stage 1; progressed to Stage 3; currently Stage 4 and terminal
Symptoms:
Persistent itching
Red patch of skin inside left labia that turned into a wart-like lump
Bloody discharge
Treatments:
Surgeries: wide local excision, lymphadenectomy, total pelvic exenteration, colostomy surgery, urostomy surgery
Radiation therapy
Chemotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I was diagnosed with vulvar cancer in January 2023.
I’m a big foodie. I love cooking and baking, and I work in the food industry. I enjoy walks, hikes, and seeking out new restaurants. I have a passion for travel, exploring new places rather than relaxing by the pool, and I’m a dedicated Lego collector.
Surgeries, tubes, and recovery challenges
After my last surgery, I had an NG tube inserted through my nose into my stomach to feed me, because my abdomen had gone through so much trauma that I couldn’t tolerate any food. I was violently sick with everything I ate, so I was tube-fed for about ten to fourteen days. It was extremely uncomfortable. One day, I became so sick that I vomited the tube up and refused to have it put back in.
Complications after surgery: infections and skin issues
After one of my surgeries, I developed an infection. During the night, I must have scratched myself and introduced bacteria, leading to cellulitis. My neck and face became dry and peeled repeatedly, leaving raw skin. This happened about five times, and I ended up hospitalized. At one point, strangers thought I had a terrible sunburn, but a kind security guard recognized it was cellulitis and offered advice that made me feel genuinely cared for. That really made me feel very loved.
The first warning signs
The first red flag was a sore, itchy patch inside my left labia that became increasingly uncomfortable. Over-the-counter creams and medications didn’t help. It eventually formed a wart-like lump, and even lidocaine couldn’t relieve the pain. I experienced walking, standing, and sitting discomfort, bleeding, a bloody discharge, and pain during sex. Eventually, I no longer wanted to have sex at all because it was so painful. That’s when I scheduled a doctor’s appointment.
Nothing was getting rid of it, and I just kept persevering. I was just so uncomfortable.
Fast-track diagnosis: a rare cancer identified
Thankfully, my doctor had seen vulvar cancer, this rare cancer, before, and immediately suspected either an infected cyst or cancer. Antibiotics did nothing, so she referred me for a biopsy. Even before the diagnosis, I knew in my heart it was cancer.
The biopsy confirmed early-stage vulvar cancer, which wasn’t a surprise at this point. The biopsy itself was extremely painful and left me in agony for days.
Staging and unexpected test results
It was initially diagnosed as stage 1; my scans didn’t show cancer elsewhere. Surgery removed the tumor and some lymph nodes, but two of those nodes were cancerous, so I was told it was now stage 3.
I was shocked but not surprised. My gut instincts had been correct from the start.
Radiotherapy and chemotherapy: intensive treatment
I received 25 rounds of radiotherapy and five rounds of chemotherapy over five weeks; Monday through Friday for radiotherapy, and a full day at the hospital for chemo every Wednesday.
Recovering from these treatments was exhausting. I did most of it alone because I just didn’t have the energy for conversation. Netflix kept me company during those long hospital days.
Recurrence: facing stage 4 and new surgeries
By January 2024, symptoms reappeared on my right labia and near my back passage. I had further biopsies, surgery in March, and again in July, each time taking more suspect tissue. Soon after, scans revealed the cancer had reappeared internally in my right groin and in my lung.
Because previous radiotherapy ruled out more radiation and more surgery was considered too risky, the only remaining option was high-dose chemotherapy. I declined, wanting to avoid spending my remaining time very ill and instead focus on quality of life.
The largest surgery: total pelvic exenteration
In October 2024, I had a total pelvic exenteration, a rare and massive surgery. Most of my large bowel, my back passage, bladder, vagina, and uterus were removed.
I now have two stomas, a colostomy and a urostomy bag, and while I initially worried about them, they are simply part of my daily routine.
Recovery was extremely hard. I had to relearn to walk and couldn’t leave the hospital for eight weeks. Daily tasks left me exhausted, but I had support from nurses, my husband, family, and friends.
Living with side effects and adjusting to daily life
Fatigue and loss of appetite linger. I have chronic pain, osteoarthritis in both hips, and lymphedema in my leg. My pace of life has slowed tremendously. My dog has been vital for my daily motivation.
I get chronic fatigue now. So I can’t do as much as I could.
I focus on what matters and let go of perfectionism in housework. Getting through each day, ensuring my family is cared for, is my priority.
The importance of support from family, friends, and my employer
My husband has been unwavering. He has been an absolute rock. I couldn’t have done this without him. Seeing his pain has been the most difficult part.
My parents, despite their own health issues, visit and support me regularly. My friends, colleagues, and even my employer have gone above and beyond, providing gifts, visits, and patience as I adjust to ill-health retirement.
The impact on my mental and emotional health
I sought counseling, especially after being told the cancer was terminal. My biggest fear was leaving my husband and how he would cope.
I have learned to make peace with uncertainty and to focus on living each day as fully as possible. I’m at total peace with it now. It’s going to happen when it’s going to happen.
And until that point, I’m just going to keep living my life.
Shifting identity and living meaningfully
I’ve learned to savor the small things — dog walks, nature, time with my husband.
My identity has shifted; I’m told I’m strong and brave, though I don’t always feel it.
Raising awareness for vulvar cancer gives me purpose, and I have built a strong online community. Supporting others gives me pride and motivation to keep sharing and reaching women who might be afraid to talk about gynecological health.
I’m incredibly proud of the awareness that I’m raising. There is life with cancer.
Monitoring and looking ahead
I no longer have regular appointments, but I can contact my care team or palliative nurse as needed.
I am considering joining early-stage clinical trials, not for my own benefit but to help those who come after me, since direct treatments for vulvar cancer are lacking.
For now, I focus on making great memories, financial stability for my husband, and empowering women to check themselves and seek care quickly.
My advice for patients and raising awareness
If you notice symptoms, get checked. Don’t ignore discomfort or delay care. Even if a symptom is embarrassing, moments of awkwardness are worth it for your future.
Just go and get it checked out. What’s a few minutes of embarrassment over the rest of your life?
Be your own advocate and empower those around you. Vulvar and vaginal cancers need more attention and openness.
I was Given 18 Months–5 Years Ago! Tammy’s Stage 4 Metastatic Breast Cancer Story
This is Tammy’s story about life with metastatic breast cancer. She opens up about how her life shifted dramatically because of her experience. One day, she was walking five miles, and the next, she was in a wheelchair because cancer had eaten through her femur.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Tammy first faced breast cancer in 2014, after a misdiagnosed lump turned out to be far more serious than expected. After surgery, chemotherapy, radiation, and hormone therapy, she carried on with her life. But in 2020, pain in her hip and leg led to a devastating diagnosis of metastatic breast cancer. She shares how hard it was to process the prognosis, especially when her first oncologist gave her only 18 months to live. Rather than accept that, she became her own best advocate. She sought six different opinions, learned about treatment lines, and found a medical team that listened to and supported her.
Throughout her experience, Tammy emphasizes the importance of self-advocacy. She explains how staying informed about treatment options, asking questions, and seeking second (or sixth) opinions have been life-giving choices. Each progression of her metastatic breast cancer led to new therapies, such as hormone therapies, and she highlights the urgent need for research and clinical trials. In fact, she’s a passionate supporter of clinical trials because the drug currently keeping her disease in check didn’t even exist three years ago. This, she says, is why funding research matters; not only to extend lives, but also to improve the quality of life for people living with stage 4 disease.
Tammy also offers her insights on the emotional side of living with metastatic breast cancer. She talks about the weight of thinking that every holiday, birthday, or family gathering might be her last. She crochets baby blankets for her future grandchildren, not knowing if she’ll be present when they’re born. Yet she embraces the present moment and encourages others to grant themselves grace. Her strong faith helps her stay grounded, and she clings to hope in all its forms. She looks forward to seeing her children get married, to keep sharing happy moments with her family, and to continue finding treatments that work.
Watch Tammy’s video above and read her interview transcript below.
From walking five miles to being in a wheelchair overnight, Tammy’s stage 4 breast cancer story is one of resilience and hope
Six second opinions and numerous treatments. Why she refuses to give up
Learn why Tammy crochets baby blankets for grandkids she dreams of meeting
Understand why the hardest part for Tammy is the fear that every special occasion could be her last
See how hope, faith, and self-advocacy fuel her resolve
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 early-stage breast cancer in 2014 and metastatic breast cancer in 2020.
My first experience with breast cancer was caught early, and by accident
I went in for my very first mammogram at the age of 40. They found a calcification or several calcifications that they were going to watch at that time. So they had me doing a mammogram every six months thereafter.
Two years later, after having four mammograms, they told me I was clear and I could go back to yearly mammograms. That was in June. I had found a lump in my left breast shortly before that June mammogram and brought it up. They said the mammogram was clear. “There wasn’t anything there, nothing to worry about.” And I should just get on with life. And so I did.
As luck had it or not,I tore my biceps tendon in January and was going to have my shoulder done, and I had to have a pre-op physical. So I went to my primary care doc and I said, “Hey, I’ve got this lump.” It was protruding through the skin. She took a look at it and looked at the mammogram, and she said, “You know, it’s just a cyst. Just have that drained if it’s bothering you.” So in February of 2014, I went in for what I thought was just a cyst drainage. I was joking with the surgeon and how he was going to make the scar so no one would ever be able to tell I had had surgery.
I was put under. When I woke up, I saw my husband and the surgeon in the hallway. The anesthesiologist was holding my hand, and I knew immediately before they said a word that it was not a benign cyst. So that spiraled into having a mastectomy, chemotherapy, radiation, and hormone therapy, which I was going to be on for ten years. And I went on with life.
Years later, I started experiencing pain
In 2019,I was having right hip pain. They did an X-ray and sent me to physical therapy, and said that it wasn’t anything.
In 2020, we relocated to another part of Wisconsin, and I had to establish care with a new doctor, which I did. I was having a lot of knee pain when I would run. It was during COVID, and there wasn’t much to do but run. I chalked the pain up to that.
I saw my primary care provider for it. She did an X-ray. She said I just needed some physical therapy. I was doing that for about six weeks, wasn’t making any progress, and eventually I just stopped going. And God bless my physical therapist, he called me one afternoon and said, “Hey, why aren’t you coming anymore?” And I said, “No offense, you’re a wonderful person, but you’re not helping me one bit, and I’m not going to waste my time anymore.” He said, “Let’s have you see one of our sports medicine doctors. Maybe they’ll have some insight I don’t have.”
So I met with one of those sports doctors, and he said, “Oh, this is simple. You have a torn meniscus, and we’re going to get in there. We’ll schedule it for surgery, and we’ll clean it up. You’ll be back running in six weeks. But first, we need to do an MRI.”
So they did the MRI. I didn’t even make it home before he called me. He said, “I don’t know how to tell you this because I deal with torn ACLs. That’s the worst news I’ve given people. But there’s something really wrong with your leg and the bone in your leg and your femur. Part of the knee. I don’t know what this is, but it’s way above what I see.”
I was referred to oncology then. A biopsy was done, and it was found that it was breast cancer that had eaten through my femur.
So I went from walking five miles one day to being confined to a wheelchair the next, for fear that it would fracture if I stepped down the wrong way. A PET scan later revealed that the right hip pain that I was complaining about was due to lesions on my right hip, and the L3, which was a benign issue, had completely fractured from cancer.
Learning that my cancer returned was devastating, because it’s incurable
Statistics for metastatic disease online through Doctor Google are very depressing. When I met with my oncologist and he told me that, at best, I could hope to live 18 more months, that was very hard to hear.
I immediately had my kids come home. My daughter who was a freshman in college, my oldest daughter, and my son who was living here. I sat them down with my husband, and we told them in person.
Honestly, death — that’s where I thought I was headed. And then there was a lot of anger that there were things missed along the way, and we were trying to process through how that happened.
I had no family history of cancer and no risk factors for it. I had the genetic testing done. And at that point, in 2014, I only qualified for the testing because of my age. But I didn’t carry any of the genes that you can see in breast cancer. I had genetic testing done again, not too long ago, because there’s so much more that they test for now than they did in 2014. And, by their standards, I still have zero risk of cancer.
My oncologist told me I was out of treatment options
My son was a sophomore in high school. I asked if I would see him graduate, and was told that that was highly unlikely.
I took the second opinion thing to the extreme. I got six. I wanted to make sure that I was completely comfortable with the path I was going to be on moving forward. So that’s kind of a standing joke. “Tammy doesn’t get a second opinion. She gets six second opinions.”
After talking to people and just doing my own advocacy for myself, I decided I needed to part ways with that oncologist. I didn’t feel that we were on the same page. And I also knew that there were other options for me. So I underwent a full right hip replacement. Stayed on the targeted therapy drug I was on for another full year under the guidance or the recommendation of my new oncologist. When that stopped working, we moved on to an oral chemotherapy drug, and I remained on that for a full year.
And then I had another progression, and was started on another targeted [00:16:30:00] therapy, an antibody drug conjugate, which was administered through an IV port. I had that treatment every three weeks. That started in April, and by the end of July, my scan showed no evidence of active disease.
I continued the same treatment until December, and then I stopped, because I was having my left hip replaced due to the cancer and the radiation, and all the damage that that caused. I had a series of failed surgeries for something that was supposed to be very simple, to the point where one of my doctors thought that I was going to have to amputate the leg at some point because of it, but I still have my leg. Then I resumed taking the same antibody-drug conjugate in July when my numbers started to creep up again. I’ve been on that ever since, and they’ve dropped significantly.
So the hope is that we’ll get back to no evidence of active disease in the next short while.
What my current treatment looks like, and the plan moving forward
Every 21 days, I have treatments on Tuesdays and Fridays. I go in and I get a white blood cell booster so that my white blood cell count will allow me to have treatment on Tuesdays.
I am fortunate that my side effects are manageable. I deal with the usual ones: hair loss, fatigue, and nausea. But I find them acceptable. This is what I have to do to stay alive. It’s just kind of a repetitive cycle. And you just hope it works for a long time to come.
Every time I’ve had a progression with the oncologist I’ve been seeing for the last several years, the first thing we do is look into clinical trials and my eligibility for those. There are some questions as to whether my estrogen receptor-positive cancer has mutated to a triple negative, and some biopsies have indicated it’s a possibility. That does kind of throw a little bit of a wrench in things. But we always look for clinical trials first before deciding on a treatment. So obviously, I’m a big proponent of those. And I hold out hope that I’ll be able to participate at some point. The drug that I’m on now wasn’t available to me three years ago. It’s a game-changer.
What people don’t understand about stage 4 breast cancer
Well, when I had hair and I didn’t look sick, or even now when I put a wig on and I go out, I think people fail to realize that I’m still in treatment, that I still struggle.
I was always go, go, go. I was the mom who was doing everything, who was involved in everything. Now, especially because I’m still not walking, I depend on people for everything in my day. And that’s very difficult. But stage 4, in general, when people see you, you get asked all the time, “Oh, when are you done with treatment?” People do not understand that you’re never going to be done.
They also don’t understand that you’re not going to die from stage 2 breast cancer. You are more likely to die from stage 4. And any research that we can do for stage 4 is going to benefit those early stages. But the statistics of living with stage 4 metastatic disease are daunting, honestly. I just passed my five-year mark from my official diagnosis, although obviously I was dealing with it longer than that, and I’ve lost so many people I’ve come to know in the metastatic community, and I just don’t think people realize that.
Somebody said, “What do you mean? You have breast cancer in your bones?” There’s just a lack of awareness, I think.
It’s hard not to think that certain moments and events could be my last
I tell people now, when I meet them after they’re first diagnosed, that they just have to grant themselves grace.
When I was initially diagnosed, I kept thinking, especially in that first year, “This is the last time I’m going to have a vacation with my family,” or, “This is the last time we’re going to celebrate a holiday or a birthday.” That was really, really hard for me, because every event seemed like it was my last one.
I specifically remember one time that my daughters were home and I had baked a cake. I had gone upstairs to my room to change. I came down, and they had frosted the cake for me, and it was the worst job of frosting a cake I had ever seen. I burst into tears and said, “I haven’t even taught you how to frost a cake. What else haven’t I taught you that I’m not going to be here to teach you in the future?”
So that mindset was probably the hardest part. You just have to learn to accept the moment that you’re in. Try to remain as positive as you can. I have a very strong faith that guides me in everything I do.
For me, the physical limitations are probably the greatest challenge. Because your quality of life always has to come first, and being pushed around in a wheelchair by your son or whoever is just difficult.
I can’t do things myself that I would want to do. I still hold out hope that someday, I will again.
My hope for the future is that manageable treatments improve the quality of life for stage 4 patients
Hope is my favorite word.
You just can’t give up hoping. I had listened to that doctor I saw early on, if I had believed him when he said, “I’m sorry, you’ve got 18 months to live,” I wouldn’t still be here. I don’t let people take away my hope.
I understand that hope looks different for everybody. One of my daughters just got engaged. She’ll be getting married next year. I never thought that I’d be here to see that day. Now I hope I’m here to see the next one get married, which will be the year after that.
So, you know, it’s just holding out hope for whatever that looks like for you in that moment. And just not letting go of that.
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.
Symptoms: Pelvic pain and discomfort, bladder issues related to pelvic tumors, incontinence, pain in the lower back and hip Treatments: Chemotherapy, immunotherapy, radiation therapy, targeted therapy (lorlatinib)
