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ALK Cancers Lorlatinib Lung Cancer Metastatic Metastatic Metastatic Non-Small Cell Lung Cancer Patient Stories Targeted Therapy Treatments

Living Every Breath: Megan’s Stage 4 ALK+ Lung Cancer Experience as a Young Mom

Megan F. ALK-positive lung cancer

Living Every Breath: Megan’s Stage 4 ALK+ Lung Cancer Experience as a Young Mom

For Megan, a young mom from Massachusetts, stage 4 ALK-positive lung cancer arrived without warning. Like many people, she had no idea lung cancer could happen to someone her age, with no symptoms she recognized as warning signs. When chest pain, shortness of breath, and sudden arm swelling led to an ER visit, the scans revealed extensive blood clots, a tumor in her lung, and cancer in her spine and lymph nodes.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Before her diagnosis, Megan’s days revolved around breakfast with her daughters, trips to the gym, errands, and mommy-and-daughter classes. After ALK-positive lung cancer entered the picture, her life narrowed to pain management, hospital visits, and time on the couch when spinal pain made it hard to move by lunchtime. Her children, who were just one and three at the time, did not understand what lung cancer was; they just wanted their mom to read books and play. Even when a coughing fit interrupted a children’s story, Megan kept showing up for them in the ways she could.​

Megan F. ALK+ lung cancer

A turning point came when testing confirmed an ALK mutation, and she met Dr. Flores, a specialist who offered targeted therapy instead of traditional chemotherapy. Within 10 days of starting the oral treatment, Megan was back on her feet, and a month and a half later, her scans showed a 40% reduction in cancer. Subsequent scans revealed more than 50% reduction and, eventually, no visible cancer to the naked eye. Today, she is considered no evidence of disease (NED) and continues taking targeted pills daily, with manageable side effects like neuropathy and bowel changes. She expects to stay on treatment long-term, and finds hope in data showing many people with stage 4 ALK-positive lung cancer remain stable for years on targeted therapies.​​

This experience has reshaped Megan’s priorities. Dishes and chores can wait; if her daughters ask her to play, she says yes. She is vocal about self-advocacy after initially being misdiagnosed with a pulled muscle and anxiety despite worsening symptoms. She encourages others to push for answers, seek second opinions, and surround themselves with a strong support system. With the help of her family, including her husband, who stepped into nearly every household role, and a community that sent cards and bracelets, she now channels her energy into her podcast, “Livin’ Every Breath,” where she talks about cancer, self-advocacy, and finding silver linings in hard times.​​

Watch Megan’s video and read her story below to find out more.

  • Anyone with lungs can develop lung cancer; young people like her who have no known risk factors can be diagnosed with stage 4 ALK-positive lung cancer.​​
  • Targeted therapy can dramatically change quality of life, as Megan went from couch-bound with coughing fits to walking, parenting, and reaching NED within months.​​
  • Self-advocacy is essential: she kept pushing after initial misdiagnoses and used personal connections to access biomarker testing and ALK-targeted treatment.​​
  • A strong support system, from family members moving in to help with childcare to friends and strangers sending small gifts, can lift patients emotionally through a difficult experience.​​
  • A universal truth: many patients discover that priorities shift after a serious diagnosis, with relationships, presence, and small daily moments becoming more important than chores or perfection.​
  • Megan’s transformation shows how living with stage 4 ALK-positive lung cancer moved her from shock and physical limitation to renewed presence with her children, advocacy for others, and creative expression through her podcast.​​
  • Name: Megan F.
  • Age at Diagnosis:
    • 33
  • Diagnosis:
    • Non-Small Cell Lung Cancer (NSCLC)
  • Mutation:
    • ALK
  • Symptoms:
    • Chest pain
    • Anxiety
    • Shortness of breath
    • Arm pain and swelling
    • Back pain
  • Treatment:
    • Targeted therapy: lorlatinib
Megan F. ALK-positive lung cancer
Pfizer

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

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

Table of Contents
  1. Biomarkers and ALK-positive lung cancer diagnosis
  2. Why I researched lung cancer and biomarkers
  3. How my biomarker result shaped my treatment plan
  4. How biomarkers changed what I thought lung cancer looked like
  5. Why hope matters and how research gives it to me
  6. What I wish I’d known at diagnosis about biomarkers and community
  7. Why biomarker testing and “scary” medical terms matter
  8. How my doctor explained my treatment options with ALK
  9. Chemotherapy conversations vs. targeted therapy conversations
  10. How I chose my targeted therapy
  11. Key questions I asked about treatment and side effects
  12. Questions I’d tell other patients to ask their doctor
  13. The power of my oncologist’s encouragement
  14. What it meant to go from being couch-ridden to playing with my kids
  15. When daily mom life became something I could celebrate again
  16. Scan results, tumor shrinkage, and quiet celebrations
  17. How I cope with “scanxiety” and waiting for results
  18. What I knew about clinical trials before targeted therapy
  19. How I humanize the importance of cancer research
  20. What I’d say to people hesitant about clinical trials
  21. My go-to support and education resources for ALK-positive lung cancer

You never thought you would cheer so loudly for a genetic mutation.

Megan F., ALK-positive lung cancer patient

Biomarkers and ALK-positive lung cancer diagnosis

We found out that I had lung cancer. We Googled it, and we were obviously not happy with what Google was telling us was going to happen. Shortly after, I was linked up with the doctor that I have now, and she mentioned that they were going to test for biomarkers. Once we Googled biomarkers, we were actually relieved, because I feel like it just sends you on a different path. 

I remember the exact time she called me to tell me I was ALK-positive. I was out with my family, and we were all at a restaurant, and I stepped outside. I got the news and was super excited because I know just how far ALK research has come in the last few years. When I went inside and told my family that I had the genetic mutation, everyone went crazy, and we were all laughing afterwards. You never thought you would cheer so loudly for a genetic mutation.

Why I researched lung cancer and biomarkers

I’d say that we were lucky. My husband’s cousin is an oncologist, and from the start, when I was in the hospital before we even knew it was cancer, we were already communicating with him. I was lucky to have him on my team, but he is not a lung specialist, so he did not know as much about ALK or anything like that. 

It is a lot to take on at first. There is a lot out there, especially on social media. You look it up, and somebody is telling you to do this cleanse, and then this other person is telling you that you need to see this person, so it can get a little crazy. I was lucky that the doctor I have now, who is absolutely amazing, specializes in young lung patients, and a lot of them have the ALK mutation. I feel like I was lucky to connect with her early on, and the information was narrowed down from a wide scale.

Megan F. ALK-positive lung cancer
Megan F. ALK-positive lung cancer

How my biomarker result shaped my treatment plan

From the beginning, the oncologist that I had said, “We’re going to do this, girl.” So I had confidence that it was going to go differently from what Google was telling me it was. But, you know, first, being a young woman, the treatment that I’m on right now, you cannot get pregnant. That was part of the conversation. 

I’m on lorlatinib, and as a first-line treatment, it is proven right now to be the best, although other things are in trial. If you get on that right away, it is the most effective. It does have the harshest side effects. So that was a conversation: you have to weigh your pros and cons. If I wanted to get pregnant, I would have had to go on a different medication. Luckily, at the time, I had a one-year-old and a three-year-old. They’re now two and four. We were totally fine with, “That’s our family. Let’s take the best line of treatment.” So we just went with it.

How biomarkers changed what I thought lung cancer looked like

I thought lung cancer looked like two to four months, and obviously, it was not a good two to four months. I thought I was going to be thrown into chemo and just see how long I could last. 

Once I found out that I had the genetic mutation, I knew that there was treatment out there, targeted therapies. Mine just came out in 2021, actually, and more than 50% of people on my medication after five years still have no progression. I just thought, “That’s huge.” At the time, I was like, “Yes, five years.” I have five years now. I don’t have four months anymore. Now, the more that I’ve educated myself on it and the more chats that I’ve been in, I see people 20 years out. So I no longer limit myself to five years, although at the time, that sounded wonderful.

To really understand and to be an advocate for yourself is so important.

Megan F., ALK-positive lung cancer patient

Why hope matters and how research gives it to me

From the start, I have always had hope. Now, it is easy. I have no evidence of disease.

Of course I am hopeful. Day to day, I don’t really even think about cancer, so that’s great. But even when I first got diagnosed, and I was on the couch because of back pain, and I couldn’t even finish a sentence in my kids’ book, even then, I was hopeful, just looking at the future and the research and the medicine that is coming out. I know there’s some in the works right now. It is hard not to have hope.

What I wish I’d known at diagnosis about biomarkers and community

I was hesitant to join the chat rooms at first. I just think knowing that there is someone out there who has stage 4 lung cancer and they’ve been on medicine for 20 years, and they’re thriving… just knowing that would have been great. 

You have to kind of search through the bad to find the good, and when you’re first diagnosed, I feel like that’s not beneficial to you.

Megan F. ALK-positive lung cancer
Megan F. ALK-positive lung cancer

Why biomarker testing and “scary” medical terms matter

I think that people should care because it really helps form their treatment, which is obviously the most important part of a cancer diagnosis. To really understand and to be an advocate for yourself is so important. 

I am blessed to have a doctor who fights for me. I know even when I’m not present in her room, she’s out there researching. But not everyone has that connection to their oncologist. For your own research, you need to know these words. I joke that there should be a dictionary out there. There should be a cancer dictionary, because even words like “hospice” sound really scary. If you look at them down to the core, they’re really all here just to support us in our lives.

How my doctor explained my treatment options with ALK

She said, “I think you should get on it right away.” Once we decided that was the path I wanted to take, that that was the medication, she said, “Let’s start it.” 

I did start at a lower dose, because the side effects could become really harsh. Luckily, I didn’t experience the really harsh side effects, just nausea and other things that I wish I wasn’t going through, but they weren’t that bad in the grand scale of things. 

Ten days after starting the medication, I went from being couch-ridden and unable to breathe to playing with my kids in the backyard.

… just looking at the future and the research and the medicine that is coming out… It is hard not to have hope.

Megan F., ALK-positive lung cancer patient

Chemotherapy conversations vs. targeted therapy conversations

When I was originally diagnosed, I was in the emergency room. I talked about chemotherapy with the oncologist I was first linked up with, but I didn’t end up going with them. My first appointment was basically, “We’re probably going to end up with chemo, and we’ll see how long you can tolerate it.”

Later, when we started talking about targeted therapy, the conversations were so different. I also had two different oncologists, and that made a huge difference. My first conversation, when chemotherapy was introduced, was kind of sad. That was the way it was presented to me. There wasn’t a “We’re going to do this, girl.” I personally had hope either way. I was like, I’m 32 years old. This can’t be the end. But there was definitely positivity and an uplifting part of the conversation when biomarkers were talked about.

How I chose my targeted therapy

Honestly, the research decided it for me. I was ready to take on whatever side effects came with something that was going to potentially eliminate my cancer. 

Just looking at the research out there, I also have a couple of lawyers in the family, and I sent them the information. They read what the medication does and how amazing it is. Everyone I talked to said, “You need to go with this. This has the best response rate.” That’s why we went with it. 

Obviously, I have kids, so that would have been a big decision if I still wanted to have a family. I feel like I was blessed to be on the other side of that. Other than that, it was: whatever is going to get us the best results.

Megan F. ALK-positive lung cancer
Megan F. ALK-positive lung cancer

Key questions I asked about treatment and side effects

I wanted to know the results — how many people have had success with that medication and for how long. I also looked into neuropathy as one of the big side effects, which I did end up getting. Luckily, it was not as bad as some other people’s. 

We were able to change the dose. Those were my questions: if we run into this side effect, what do we do? A lot of it was just changing the dose. Because I had a good response to it, it was easy to adjust as we went.

Questions I’d tell other patients to ask their doctor

It depends on the individual, but I would say to ask your doctor about pregnancy if that’s important to you. That’s one of the big things you should be asking about. Also, ask how to deal with side effects. I would ask ahead of time, “What are the side effects, and if these happen, what do we do?” You might be at your house, and of course, your oncologist is a phone call away, but if you’re experiencing neuropathy for the first time, you’d be like, “What is going on?” 

If you already have in your mind how you can handle these steps, it’s more comforting. I’d also ask what supports are out there. You’re going to be taking this medication; there are Facebook pages, and the drug itself has support groups. If you have access to those, then maybe you don’t even need to call your doctor in a panic, because you’ve already educated yourself, and you have chat rooms and forums to go to.

Ten days after starting the medication, I went from being couch‑ridden to playing with my kids in the backyard.

Megan F., ALK-positive lung cancer patient

The power of my oncologist’s encouragement

My doctor asks if it’s OK to share my story with other patients. She’ll say, “I just got someone your age. Can I tell them about you?” I think that’s super helpful, because she did that with other patients for me as well. She’d say, “I’ve got someone’s permission to tell you this. They’ve been on your medication for the last five years. They’re doing great.”

I remember specifically, once I responded well to the treatment, she called me and said, “Lorlatinib is your drug,” and I was like, ”Yes, it is.” She’s always positive and always coming in with uplifting phrases.

What it meant to go from being couch-ridden to playing with my kids

It was really hard. I was a stay-at-home mom. I was looking to go back to work because I was like, “This is so hard,” because every day I felt exhausted. 

Being a stay-at-home mom is hard, but it was different with stage 4 lung cancer, and I had no idea. From the diagnosis day to the day I took my medication, because there was about a month in between, it was just so hard. 

My in-laws are amazing. They flew home and stayed at our house or at my sister-in-law’s down the street. My mother moved in, and my dad would come to and from work. I had all this help, but I wanted to be a stay-at-home mom. I wanted to play with my children. Watching everyone else was so beautiful and awesome that they came for me, but it felt like I was watching from the outside of things that I wanted to be on the inside doing.

Megan F. ALK-positive lung cancer
Megan F. ALK-positive lung cancer

When daily mom life became something I could celebrate again

I remember specifically, at that time, I had a one-and-a-half-year-old, and of course, they throw tantrums. During every tantrum, I was like, “That’s fine, everything’s fine.” I was almost happy about the tantrum. Just being involved in it was so awesome. 

I don’t even remember the exact day-to-day; I just remember that on the tenth day, we were running around outside, and I thought, “How many days ago did I start this medication? This is crazy.” When we went back and looked, and realized that I had started just ten days before, I just couldn’t even explain how happy I was.

Scan results, tumor shrinkage, and quiet celebrations

When I had my scans a month and a half after I started the medication, I had a 40% reduction in cancer. My next one was even better; it was more than 50% gone. 

At first, the big medical terms came through in the report as a message before the doctor called. We had to Google everything in there, because if you change a couple of letters in some of those words, they’re actually bad. We had to make sure we saw what we thought we saw. 

We were ecstatic. I remember we read it in my husband’s office, and we were just silently dancing. We had gone in and shut the door, with all the family out there. I don’t even think we told them we were going to read it. We celebrated, and then we talked to our oncologist. She was so excited for us, but it almost seemed like she couldn’t believe it because it was so quick. A lot of people have this response, but it’s over a year or two. She seemed shocked by it, too, which was even more exciting.

When I had my scans a month and a half after I started the medication, I had a 40% reduction in cancer. My next one was even better; it was more than 50% gone. 

Megan F., ALK-positive lung cancer patient

How I cope with “scanxiety” and waiting for results

Do you know the song “Good News” by Shaboozey? That’s our family song. It came out around the time that I was diagnosed, and now every time we’re going into a scan, we play “Good News,” because that’s what we need. So far, he’s come through. 

I would say I live my life in three-month intervals. I have a scan, it looks really good, and then you’re fine for about two and a half months. Then, for the two weeks before the scan, you’re like, “Everything seems okay, but is that little pain something?” 

For me, the day of the scans is fine. It’s the waiting for the results that causes anxiety. Last time, my husband and I went and shared some lunch, but we didn’t eat it. We just sat at the table and didn’t really speak. We just had the food in front of us and waited for the results to come through. That’s when I get the anxiety — afterwards.

What I knew about clinical trials before targeted therapy

Nothing. I honestly didn’t even think I could get lung cancer. You see the commercials with people who can’t speak, and I had never smoked in my life, so I thought I couldn’t get lung cancer. I didn’t even know it was something I could get. 

Once I was diagnosed, even Googling it right off the bat, they don’t really break it down for you and tell you everything. It wasn’t until I got connected with this doctor, who said we would test for biomarkers, that I started doing the heavy research into what it could possibly be. 

There are multiple mutations. I was most hopeful for ALK because I saw that there were already three generations of drugs out, and they’re working on a fourth. I hear things in other countries that are maybe coming along the line. It seemed like there was a lot of research and time put into ALK. But I know there are others out there, and they’re also coming up with treatments, so I’m happy for everyone in the targeted therapy community.

Megan F. ALK-positive lung cancer
Megan F. ALK-positive lung cancer

How I humanize the importance of cancer research

I actually spoke at Foundation Medicine, which is the company that does biomarker testing. I said, “You know, there are all these people in the lab, and they’re creating this drug or the latest thing. I’m at home planning birthday parties, and I’m at home running around in the backyard with my kids. This research is great on paper, and it’s great data, and it’s clearly doing us well, but I see it as more time. I see it as more hope, more tantrums that I can celebrate.

What I’d say to people hesitant about clinical trials

I’ve learned that there is extensive research that goes into a drug before it even becomes a real clinical trial that you can enter yourself into. Only a couple of years before I started taking my medication, it was also the subject of a clinical trial. There’s one out there now, and I’m in plenty of groups. A lot of people are responding even better than with the one that I’m on. 

As I said, it’s all about time. I have stage 4 lung cancer with an ALK mutation. My cancer is constantly trying to get smarter than my therapy. You never know when that’s going to happen. 

My next line might be a clinical trial. The reality is, if something happens in the next couple of years, that’s my next line. I understand that it’s scary, but looking at the research and the science and how far we’ve come, I fully put my trust in it.

My go-to support and education resources for ALK-positive lung cancer

I use the Young Lung group a lot. They were a community I joined early on. I would also say ALK Positive. If you go to their website, they have a lot of good forums and places where you can find other ALK‑ies. They also have a Facebook group for patients and their supporters. Other than that, I’ve found other ALK-positive people through Instagram. 

To anyone newly diagnosed, I’d say don’t get discouraged, because there are a lot of people out there who might have, you know, drunk only green juice for three weeks, but they also probably responded well to a treatment. Sometimes it can get scary when you’re following someone on social media, so just be wary that it’s social media and you don’t know the whole story.

This research is great on paper, and it’s great data, and it’s clearly doing us well, but I see it as more time. I see it as more hope, more tantrums that I can celebrate.

Megan F., ALK-positive lung cancer patient
Megan F. ALK-positive lung cancer
Pfizer

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

Megan F. ALK-positive lung cancer
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Megan F. ALK-positive lung cancer

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Categories
Chemotherapy Clinical Trials Colon Colon resection Colorectal FOLFIRI (folinic acid, fluorouracil, irinotecan) Immunotherapy Metastatic Panitumumab Patient Stories Radiation Therapy Surgery Targeted Therapy Treatments Xeloda (capecitabine)

From Losing His Appetite to Stage 4 Colon Cancer: Joe’s Story

Joe C. colon cancer

From Losing His Appetite to Stage 4 Colon Cancer: Joe’s Story

Joe’s stage 4 colon cancer experience began at age 34 with symptoms that were easy to dismiss in the restaurant world: fatigue, loss of appetite, and an indescribable sense of feeling off. He had spent his life on his feet in kitchens, eventually co-founding a popular bagel shop in Austin and living in Georgetown, TX, with his wife Christen. When he suddenly found himself unable to enjoy food on a cross-country trip, he later woke up with the worst abdominal pain he had ever felt and a life-changing CT scan showing his liver completely covered in lesions.

Interviewed by: Tory Midkiff
Edited by: Chris Sanchez

A colonoscopy confirmed that Joe had colon cancer, and urgent surgery removed a mass in his colon that was close to causing an obstruction. He then heard blunt assessments from clinicians suggesting he had widespread disease and little time left, and should simply enjoy what remained. Yet he began chemotherapy and targeted therapy. Against expectations, his first scans after treatment brought an enormous wave of hope: almost all the cancer had shrunk, many liver lesions began to calcify, and soon he reached no evidence of disease (NED), a milestone he never thought he would see.

Joe C. colon cancer

Over time, however, cancer returned; first in Joe’s liver, then his lymph nodes, and later his lungs. He cycled through more treatments, only to see the disease progress again. Today, he is patient number zero on an immunotherapy clinical trial at MD Anderson, describing it as a giant leap of faith rooted in both realism and hope within his ongoing colon cancer experience.

Throughout, Joe and Christen have focused on mental health, nature, and community. From therapy, meditation, and prayer to pushing himself outside for quiet time in beautiful places, he says that getting into nature, zoning out, and being present have been some of the greatest gifts of this experience. Just as importantly, he has become a powerful advocate, volunteering with the American Cancer Society, co-hosting fundraising events, and serving as a Fight CRC Team Crow ambassador with Christen. In Washington, DC, they help install flags on the Capitol lawn to represent lives lost to colorectal cancer and meet lawmakers to push for better funding and earlier screening, especially as colorectal cancer has become the leading cancer killer in people under 50.

Watch Joe’s video or read his edited interview transcript below to find out more about his story.

  • Joe’s experience shows how easy it can be to dismiss early symptoms like fatigue and loss of appetite, especially when they resemble everyday life in a demanding job.
  • Even with advanced disease, he experienced dramatic early responses to treatment, including no evidence of disease, which reshaped his sense of what was possible.
  • Joe learned that being present, especially in nature, and tending to mental health through therapy, meditation, prayer, and rest can be as vital as medical treatment.
  • His perspective shifted from focusing only on his own experience to building community and advocacy through volunteering, fundraising, and policy work.
  • A universal truth in Joe’s story is that feeling less alone and staying connected to others can change how someone moves through serious illness.
  • Name: Joe C.
  • Age at Diagnosis:
    • 34
  • Diagnosis:
    • Colon Cancer
  • Staging:
    • Stage 4
  • Symptoms:
    • Loss of appetite
    • Fatigue
    • Malaise
    • Severe pain in the abdominal/liver area
    • Back and shoulder pain
    • Lightheadedness
  • Treatments:
    • Surgery: colon resection
    • Chemotherapy: FOLFOX, capecitabine, FOLFIRI
    • Targeted therapy (monoclonal antibody): panitumumab
    • Radiation therapy
    • Immunotherapy (clinical trial)
Joe C. colon cancer
Joe C. colon cancer
Joe C. colon cancer
Joe C. colon cancer
Joe C. colon cancer
Joe C. colon cancer
Joe C. colon cancer

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

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

Transcript of Joe’s Interview
  1. Early life, career, and restaurant journey
  2. Travel, music, and life with Christen
  3. Early symptoms, fatigue, and loss of appetite
  4. Misdiagnosis, pain, and rushing to the ER
  5. ER visit and first CT scan
  6. Colon surgery, official diagnosis, and my first days in the hospital
  7. Lifetime chemo plan and my initial treatment response
  8. No evidence of disease, maintenance chemo, and first recurrences
  9. Progression to my liver and lungs, and moving to new lines of chemo
  10. Mental health, nature, and staying present
  11. Community, support system, and advocacy
  12. Fight CRC, Capitol flags, and screening advocacy
  13. Colorectal cancer funding gaps and “be the buffalo”

Early life, career, and restaurant journey

So my name is Joe Carr. I am 37 years old. I live in Georgetown, Texas, and in 2023, I was diagnosed with stage 4 colon cancer. So I’m living with colon cancer.

Before my diagnosis, I grew up in Michigan. So I lived there for 28 years, went to Michigan State University, grew up in the Lansing, Michigan area, and moved to Austin in pursuit of opening my own restaurant one day. It’s what I’ve always done since I was like 16. My first job was at Pizza Hut. And so I’ve always worked in restaurants, and I helped open a couple of restaurants in the Austin area for a while, and eventually met up with a really good friend of mine who was a business mentor, who was consulting for another guy in the area that wanted to open a bagel shop. He had a really good bagel recipe, but he wasn’t super experienced in the operational side of running and opening a restaurant. So we kind of joined forces, and that was in early 2021 when we opened Rosen’s Bagel Shop in Austin. And then we opened a second one, like five months into it. It was an opportunity that kind of fell in our lap. We weren’t actually planning on opening a second location that fast. And it’s been really great. The bagel business has done really well. 

Travel, music, and life with Christen

We’re really happy with our team and our product, and we’re looking forward to growing Rosen’s. So that’s kind of career-wise where I’m at. Fun-wise, my wife and I love traveling. Her name is Christen. We married in 2021 as well. And we’ve traveled all over the place together, traveled almost completely across the United States at this point. We went to Peru and did a bunch of hiking and sand surfing. We went to Guatemala for our honeymoon and spent like ten days there. It was beautiful. I highly suggest Guatemala; it is very underrated.

And that’s kind of how we looked at our year. Every year, we would try to plan something big like that. We had a trip planned for Spain that got canceled because of COVID. We had a trip planned for Switzerland, and that got canceled because of the cancer diagnosis. But other than travel, I’m a big music fan. We’ve probably gone to 20 or 30 different live concerts together since we’ve been married. So any opportunity to get out and enjoy live music or food is huge. Obviously, being in the restaurant industry, I’m constantly going to new restaurants and trying new things and trying to broaden our food diversity a little bit, keep things interesting. 

Early symptoms, fatigue, and loss of appetite

Yeah. So it was an interesting kind of set of circumstances. Being someone who’s in the food industry, I always have an appetite. And being in the restaurant industry, people who work in that industry know that it’s long hours. You’re on your feet a lot, so you’re tired all the time. So when I started looking back, when I realized what the signs and symptoms were, it was really easy for me to push them off as normal life occurrences because of what I did for a living. The weirdest one was the loss of appetite, though.

We were going on a kind of cross-country trip. We were going to Salt Lake City for a couple of days, and then Boise, and then Florida to attend a graduation. And when we were in Boise, we went to this really nice restaurant, and they brought out the bread, and I took a bite of the bread and, from a technical perspective, I could tell it was really good. It was baked well. It had fantastic flavor, but for some reason, I just didn’t want to eat it. And I’ve never experienced that before in my life, other than maybe when I had the flu or was really sick and just didn’t want to eat. And then the next couple, we ordered probably five or six dishes, and everything was the same thing. I just had no desire to continue eating them, even though they were tasty.

So that night, we boxed up most of our food and went home. And then a few days later in Florida, the same situation happened. We went to this Cuban restaurant. It’s pretty famous down there in the Tampa area. I ordered this monster Cuban sandwich, which I was really excited to try, and I probably had three bites of it, and I was like, I just can’t eat. And it was the weirdest feeling. I was the guy who would not only eat my entire plate normally, but I would also finish Christen’s plate. I love food. And so that was pretty alarming to me.

And I just kind of felt generally off. It’s really hard to explain, but I lacked a lot of energy. The weeks before that, I remember a couple of times driving to different bagel locations of our restaurants and having to pull over in the middle of downtown Austin and just rest for like five minutes. I’d set a five-minute alarm on my phone, pull into a parking spot, and fall asleep. So that was when the signs were really like, something is wrong. I ended up going to a blood testing kind of chain where you just walk in and walk out, and they email you the results, and it’s kind of up to you to decide what to do with those. And there were red flags on there, but most of them pointed towards a pre-diabetic situation.

Misdiagnosis, pain, and rushing to the ER

And so I was like, “Okay, I’ll just eat better and exercise and take care of this on my own.” Still started feeling weird. Went to an urgent care. The doctor gave me a kind of a quick review and saw that the insides of my ears were inflamed, which was really common for me. I’ve had a ton of ear problems growing up as a kid. And he was like, “Yeah, because of all the elevation gain you just had on your trip, you probably had an ear infection. You’re just coming out of that. It might make you feel a little lightheaded and blah, blah, blah. And that’s probably what it is. So we’re going to give you some antibiotics, and hopefully that takes care of it.”

And then everything from there happened really quickly. It was a couple of days later. I was at work, and I started having really bad back and shoulder pain. It felt like I pinched a nerve or something, and I was trying to just stretch it out during the day. We had a business meeting that day. I couldn’t sit down. I was standing flat against the wall while we were having this meeting. It was super awkward. And my business partner Joe looked at me, and he was like, “You need to leave. You don’t look well.” And so I went straight to a masseuse and tried to get them just to hammer whatever I thought was wrong with me out of my shoulder. And that did not work.

I went home, lay on the couch, and fell asleep. This was like 3 or 4 in the afternoon. Woke up around 10:00. My wife was trying to get me to go to bed, and I was like, “No, I’m just going to sleep on the couch. I don’t feel like moving.” And then about 3 or 4 in the morning, I woke up with the worst pain I’ve ever experienced in my stomach, kind of in the liver area. And I couldn’t move. And every breath I took, it literally felt like someone was stabbing me. So I kind of slid off the couch and crawled to the bedroom and propped myself up on the bed, and I’m super awkward because I’m holding my breath. After all, it hurts so bad. And so I’m grunting, making these weird noises that woke my wife up, and she’s like, “What the heck is going on? What are you doing?” And I was like, “We need to go to the hospital right now.”

And so those were the symptoms that led up to it. I never saw blood in my stool, which is a really common occurrence for colon cancer. I never saw changes in bowel habits. I had nothing to do with that stuff. It was all the fatigue and the appetite and then the pain the night before.

ER visit and first CT scan

The hospital was an interesting situation. It was Father’s Day weekend, so there were not a lot of doctors available, we found out. But when we got into the ER, they did the basic vitals and blood tests, and the doctor was like, “I’m not really sure if there’s anything serious. Let’s maybe put you on some pain medications, send you home, and see how you feel.” And that’s kind of been a weird thing for me throughout my entire cancer journey: even when I’m on chemo or things like that, I’ve had pretty good blood test results that look like a healthy human being. So it’s been kind of bizarre.

But before they sent me home, I said, “Okay, I will say, I haven’t been eating, and I’m struggling with energy and that sort of thing.” And so he was like, “Okay, well, then let’s get you into a CT scan just to double-check.” And so I went to a scan, came out of the scan, and the ER doctor just looked at me, and he said, “I have good news and bad news. The good news is chemotherapy is really good these days.” And that’s how the conversation was led off. And I was like, “Are you saying what I think you’re saying? Do I have cancer?” And he was like, “Well, I’m not technically the person who can diagnose you. But it does appear that you have cancer because your liver is completely covered in lesions.”

Colon surgery, official diagnosis, and my first days in the hospital

And so that was how we kind of pre-found out without the official diagnosis. And so I didn’t even know what to think. I think I asked him, “Okay, do I go home, like, what’s happening?” And he was like, “No, you’re here for the weekend for sure, and we’ll go over the next steps.” So they got me into a room. We had to get a colonoscopy the next day. So I went into the colonoscopy prep that night, and it was Saturday. We went and did the colonoscopy. And I remember coming out of the colonoscopy very woozy. And I’ve heard this from other cancer fighters, that it’s very bizarre because they tell you right when you’re coming out of anesthesia what they found, and you’re still trying to figure out where you are. But I remember him very clearly saying, you know, we found a mass, and it’s confirmed that you have cancer.

And so that was Saturday. Sunday was Father’s Day. There weren’t any surgeons available. We needed to do surgery before chemotherapy because my mass was really close to causing obstruction in my bowel pathways, so we needed to get it out of there pretty quickly. So I just had to sit there for two days on pain meds because no one was available to do the surgery, which was really fun. And then Monday came around. We finally got into surgery.

They removed the mass. They only had to take a small amount of my colon out, so I wasn’t required to have a colostomy bag. And then from there, they said, “You need to recover, and then you can start chemo in two weeks.” And so that was kind of the hospital experience. The hospital experience was also like, you have so many questions, but you’re not talking to the right people yet because you don’t have your oncologist. And so I’m asking, “What should I be eating? How should I be helping my body even now, before this all starts?” And I remember the surgeon looked at me and he said, “You know, brother, you’ve got so much cancer spread that you should just go home and have pizza and have beer because it doesn’t look good. You know, just enjoy your life.”

And then the same thing happened, because we couldn’t see an oncologist. After all, no one was available. I received a phone call from an oncologist. And over the phone, he was like, “I looked at your reports, and you’ve probably got about two years left to live. And so all this is happening, and there’s not actually anyone to have that conversation with. So you’re just spiraling mentally. It was… that was definitely the hardest few days of my life.

Lifetime chemo plan and my initial treatment response

So they originally told me I was going to be on chemo for life. And what that means is chemo until it stops working, you know, is what they say. And it’s a frustrating thing for someone with stage 4. All you ever hear is, “We’re going to give you treatment to keep you alive as long as we can, but nothing we’re doing is going to cure you.” And that’s what the standard, I guess, verbiage is coming from the doctors.

Now, people have lived a really long time being stage 4. But it’s just not something I don’t think doctors are comfortable saying, or they’re just so used to the terrible statistics that they kind of treat you like just a number. So I had a port installed in my chest during the procedure when they removed the mass, so we were ready for chemo. We did a drug called FOLFOX, which is one of the most standard lines of treatment for colon cancer. And then the plan was to do six months of that in combination with a targeted therapy called panitumumab. I am somewhat fortunate that my cancer is not mutated, so I had a little bit more options and a hopeful response from the chemo.

So we started chemo, and we got our next PET scan three months in, and the initial PET scan that we received was so great. Almost all the cancer was gone. Everything had shrunk by about 60%, and a lot of the lesions on my liver had started to calcify and die.

No evidence of disease, maintenance chemo, and first recurrences

So it was this huge wave of hope that we really needed. So right from the get-go, we had positive results. And then I think the next PET scan, I had no evidence of disease anywhere, which was something that I never actually expected to get to. After the 12 rounds and going NED, I was kind of like, “Okay, so can I stop? Do I need to stop doing chemo?” And they’re like, no, no, no, you’re in chemo for life. I’m telling you, it’ll come back.

And so we went on maintenance chemo, which was one drug. I think we did that for a few months, and then we switched to an oral pill. And that was a lot better, just side-effect-wise and just quality of life. Then we started seeing the tumor markers in the blood tests rise again, signaling there’s a recurrence coming. And the blood test that we get usually can detect the cancer recurrence, like four to six months sooner than a PET scan can. It’s at a really microscopic, microscopic level. So once that happened, we did see in the PET scan a little spot in my liver come back. So they put me back on FOLFOX because my body had tolerated it well. They felt it was still safe. And, you know, a month or two later, it was gone, and I went back into no evidence of disease. So I started getting this cockiness.

I want to say honestly that I was like, “I can do this.” And it was helpful in a confident way, but I think it made me kind of lose track of how serious this is, and not to take things for granted. Because a year later, after that, now we’re in the second year, there was a recurrence in my liver again, and this time also in my lymph nodes. So the liver spots were still relatively small, so they thought that it would be fine to go off chemo for a little bit, or to take the chemo pills and use radiation to try and get rid of the lymph nodes. So we did three weeks of radiation, 15 treatments, and zapped away the lymph nodes. But while we were on the radiation, and because we weren’t on an aggressive chemo anymore, the liver started spreading more and more.

Progression to my liver and lungs, and moving to new lines of chemo

And then it ended up getting to the point, at the next PET scan, that we saw progression not only in the liver, but now it had spread to my lungs for the first time. And so they were like, “Okay, you responded well to chemo the first time. We’re going to try it again, even though it’s not fun.” And this time we tried it, and, you know, a month or so in, we realized it wasn’t working. So they switched to a different drug called FOLFIRI. It’s still a first-line treatment as far as the lines go. And we did that for a couple of months and saw that that wasn’t working.

And that’s kind of where we are today. But we recently just started a clinical trial, an immunotherapy clinical trial at MD Anderson, two weeks ago. And we’re the patient number zero. We’re the first ones to do this trial at MD Anderson. So there’s been some really positive results in it in other cancers. It’s the first time we’re using it in colon cancer, and being the first one at MD Anderson, it’s a lot like a, you know, we’ll see how it goes kind of thing. So it’s an interesting mental experience. You’re hopeful because you’ve seen positive results, but also, there’s nothing to go on for your cancer. It’s just a giant leap of faith. And that’s where we’re sitting today.

Mental health, nature, and staying present

It is a persistent struggle.

So very early on, we knew that if we were going to have any chance at this, we needed to be as mentally strong as we possibly could be. So we did a lot of the classic stuff: of course, going to therapy, we were doing breathwork, meditation. I was finding myself praying a lot more than I ever had. I never really considered myself much of a super religious person. But there’s something when you’re going through this that brings you to that point.

But what really made the world of difference to me was getting out into nature and reconnecting there and going to it even when I didn’t want to go to it. The side effects from chemo are so intense that it’s giving you every excuse in the world to lie in your bed and rest and feel sorry for yourself and scroll on social media and not have an active lifestyle at all. And you have every right to do that when you’re going through this. You need rest. I think that’s the most critical thing for recovery. But my wife has been so strong in pulling me out of those moments and booking trips and being like, “Okay, this is going to be two days after your chemotherapy, but we can do this, you can do this. And if you feel bad when you get there, we’ll rest. You don’t have to do anything you don’t want to do.”

But when I found that I would push myself to get out there a little more and just spend time in silence in nature, I felt so strong. It’s hard to explain, but I think it was more of the relaxed state. Because if you’re ever going to be present somewhere, what better place to be than when you’re staring at a beautiful landscape or mountains that you can’t describe or paint? And so it teaches you the appreciation of being present, which is what we’ve learned through this cancer diagnosis. You have to be, because as soon as you start thinking too far in advance, whether it’s on the positive side, you start to neglect your day-to-day and your steps and your habits that you’re building to recover. Or if it’s the alternate side, the negative side, where you start thinking about your mortality, then you cause all the stress in your body, and everything gets bad. Then you start making terrible decisions, and you’re not thinking straight. So getting into nature, zoning out, being present has been, by far, I think, our biggest gift that we’ve learned so far.

Community, support system, and advocacy

So I think something I haven’t really touched on is how strong community and a support system are. It’s a lonely experience. And if you allow it to be that lonely experience — some studies show that outcomes are not great with people who isolate themselves in these situations. So my goal from the beginning has been to try to find ways to either prevent this from happening to somebody else or help somebody through it. I’ve felt that I’ve been strong enough mentally and physically to be able to help, and if you’re able to help, why wouldn’t you help?

So we first got into some volunteering. We worked with the American Cancer Society. We’ve helped throw an event called Fought Cancer for the last two years, which has raised money to help cover lodging and transportation costs for patients who are visiting MD Anderson or San Antonio, and they’re outside of the city. And something like that, a lot of people might not realize the impact it has, but any barrier or resistance to going to treatment when you’re mentally weak and physically weak is like giving a kid a piece of candy. It’s like, “If I don’t have to go, or if it’s too hard for me to go, I’m not going to go.” And I’ve heard people saying too many times, “I stopped going to this treatment because it was too long a drive, it was too expensive. So we just gave up.” And it’s heartbreaking.

And so we kind of found some advocacy in there. And then, more focused on colorectal cancer, is the organization Fight CRC. We were nominated to be ambassadors this year, which has been a really amazing experience. Usually, in the past, Fight CRC has done individual ambassadors every year. This year, they did teams. So it got to be a group effort. So my wife Christen and I are a team. We’re called Team Crow. It’s our names put together, Christen and Joe. So you’ll see crows all over our house, too. It’s just a fun name.

Fight CRC, Capitol flags, and screening advocacy

Fight CRC has a couple of goals. One is to raise awareness and advocate. And this week, on March 1st, on Sunday, we’ll be in Washington, DC. There’s a big flag installation on the Capitol lawn where we will put flags down, and it’ll represent the number of deaths expected for colorectal cancer this year. And as we found out through the new statistics that the American Cancer Society just came out with, it’s the number one killer in people under the age of 50 years old now. That was originally expected to be by 2030. So it’s moving faster than even the expectations were. So there’s a huge sense of urgency to make a change.

And so going to the Capitol, doing the flag installation, that’s more of an awareness. You can see it from a plane when you’re flying in, and you can see it when you’re walking by. The representatives in Congress can see it from the windows of the Capitol. So it’s impossible to ignore. And then two days later, there are about 300 of us that will break up into groups, and we will talk to our representatives of our states to try and advocate for more funding and better screening access on the preventative side.

Colorectal cancer funding gaps and “be the buffalo”

And as far as the funding ask when we all meet, if you look at the top ten cancer deaths and diagnoses in the United States, for whatever reason, colorectal cancer is the only one that doesn’t have a dedicated research program. So it’s now, like I said, the number one killer under the age of 50, but it doesn’t have its own research program. So clinical trials are limited, and the standard care practices haven’t changed in a long time. There are things that are happening now; it’s getting a lot better because of the funding that we do have. But we need a lot more. So that’s kind of the main focus.

But yeah, I’m happy we pointed out the nature thing. To sidebar, we’ve got our buffalo here, which is our mascot. The crow is our marriage mascot. The buffalo behind me and the buffalo skull are our mantra and the way we view this journey. We learned that buffalo are one of the few animals that run into storms. If you go into the storm, it passes more quickly than if you run away from it. So every time we’ve hit an obstacle, we’ve absorbed it emotionally, handled it the way we needed to handle it, and then told ourselves, you know, be the buffalo and let’s get after it and go kick some butt. So it’s always been around us.

Joe C. colon cancer
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Categories
Chemotherapy EGFR Lobectomy Lung Cancer Non-Small Cell Lung Cancer Patient Stories Platinol (cisplatin) Radiation Therapy Surgery Targeted Therapy Treatments Tyrosine kinase inhibitor (TKI)

Roxanne’s Life as a Single Parent with Stage 3 EGFR+ Non-Small Cell Lung Cancer (NSCLC)

Roxanne C. stage 3 EGFR+ non-small cell lung cancer

Roxanne’s Life as a Single Parent with Stage 3 EGFR+ Non-Small Cell Lung Cancer (NSCLC)

Roxanne was a special needs teacher and an active mother who loved the outdoors when a routine check for an ovarian cyst led to an incidental finding on her lung. Initially, her doctor suggested the spot was scar tissue, but later, a biopsy and surgery revealed stage 3 non-small cell lung cancer (NSCLC). She later learned she had an EGFR mutation, making it possible for her to be on targeted therapy.

Interviewed by: Ali Wolf
Edited by: Katrina Villareal

Roxanne navigated a lobectomy, chemotherapy, and radiation therapy largely on her own due to COVID pandemic hospital restrictions. As a single mother, the physical toll of treatment was compounded by the weight of parenting and financial stress. Roxanne has the same EGFR mutation as her grandmother, who was diagnosed with lung cancer in her early 80s.

Roxanne C. stage 3 EGFR+ non-small cell lung cancer

Today, Roxanne is still on targeted therapy. She is looking to connect with other single parents navigating shared invisible struggles. By sharing her stage 3 non-small cell lung cancer experience, she hopes to empower others to seek support and to advocate for community-based resources that allow parents to focus on healing without the constant fear of financial or emotional isolation.

Watch Roxanne’s video or read the edited transcript of her interview to find out more about her experience:

  • The power of incidental findings: Roxanne’s cancer was caught by accident during a scan for a different issue, highlighting the importance of following up on any unusual imaging results.
  • The reality of single parenting with cancer: Managing treatment side effects while raising a child requires a unique support system that often doesn’t exist in traditional clinical settings.
  • The importance of biomarkers: Understanding an EGFR mutation can change a treatment plan from traditional chemotherapy to targeted therapy pills, offering a different path for long-term management.
  • Advocating for clarity: Patients should feel empowered to ask for clear definitions of their staging and treatment side effects rather than relying solely on their own research.
  • Universal truth: Strength is not the absence of fear or stress, but the ability to keep showing up for those we love, even when our own bodies are under repair.
  • Name: Roxanne C.
  • Age at Diagnosis:
    • 43
  • Diagnosis:
    • Non-Small Cell Lung Cancer (NSCLC)
  • Staging:
    • Stage 3
  • Mutation:
    • EGFR
  • Symptoms:
    • None; incidental finding
  • Treatments:
    • Surgery: lobectomy
    • Chemotherapy: cisplatin
    • Radiation therapy
    • Targeted therapy: tyrosine kinase inhibitor (TKI)
Roxanne C. stage 3 EGFR+ non-small cell lung cancer
AbbVie

Thank you to AbbVie for their support of our independent 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 informed treatment decisions.

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

Table of Contents
  1. Cancer diagnosis and stage
  2. Who I am beyond cancer
  3. Why I loved teaching special needs children
  4. The unexpected discovery of a lung mass
  5. My grandmother’s late lung cancer diagnosis
  6. My grandmother’s mutation and difficult treatment choices
  7. Delaying follow-up after the first CT scan
  8. Second CT scan and emergency referral to an oncologist
  9. First oncologist visit and biopsy decision
  10. Hearing the diagnosis alone as a single mom
  11. Shock, lack of information, and being the only parent
  12. Lobectomy during the pandemic and going through surgery alone
  13. Postoperative complications and sudden restaging to stage 3
  14. Chemotherapy, radiation, and finding out about my biomarker
  15. Learning about biomarkers while being overwhelmed by lung cancer treatment
  16. Only hearing “stage 3 cancer” amid the information overload
  17. Researching targeted therapy side effects on my own
  18. The double-edged sword of targeted therapy and finding support online
  19. How I learned what EGFR meant
  20. Not feeling heard and worrying about my children’s risk
  21. Daily life being on targeted therapy as a single mom
  22. The emotional and financial toll of cancer as a single parent
  23. Support programs for my child and the need for support for parents
  24. My message to other single parents facing cancer
  25. Stress, healing, and my desire to help other single parents
  26. Finding strength and purpose through cancer

I didn’t have any warning signs.

Roxanne C., Stage 3 EGFR+ Non-Small Cell Lung Cancer Patient

Cancer diagnosis and stage

I’m Roxanne and I have stage 3 non-small cell lung cancer (NSCLC).

Who I am beyond cancer

I’m a mother, and I’m also into camping, being outside, and being active with my children. I was a special needs teacher before I got diagnosed, and you have to be pretty active to be in that field. That’s who Roxanne is; I’m a person, a mother, a teacher, and I love to be outdoors. Oh, and I love antiques; I’m an antique collector.

Why I loved teaching special needs children

You need to have a lot of patience for it and a lot of understanding, and I love it. I love being in that career. It’s very fulfilling to make a difference in someone’s life who needs it.

Roxanne C. stage 3 EGFR+ non-small cell lung cancer
Roxanne C. stage 3 EGFR+ non-small cell lung cancer

The unexpected discovery of a lung mass

I didn’t have any warning signs. I started to have some pain in my abdomen, which felt similar to an ovarian cyst that I had had before. I went to my gynecologist and said, “I’m having pain here. Can we check?” She did a CT scan on the left side of my ovary. After, she called me back and said, “You need to come in. We found the cyst, but we also caught the bottom corner of your right lung. We see something there and we’d like you to come in.”

When I found out, I was sitting with my seven-year-old. She was telling me and I didn’t even have a clue because I didn’t feel bad; I just had pain in my ovary. When she told me they found something and that it could be scar tissue or something like a collapsed lung, I said okay. I didn’t feel anything. I didn’t feel pain, so I didn’t take care of it right away.

The pain didn’t have anything to do with lung cancer. It was on the opposite side. I wasn’t sick.

Three years prior, my grandmother got diagnosed with lung cancer… she was stage 4.

Roxanne C., Stage 3 EGFR+ Non-Small Cell Lung Cancer Patient

My grandmother’s late lung cancer diagnosis

At that time, I was 43 years old. I didn’t smoke. There was nothing that would make me think what it could be. But three years prior, my grandmother got diagnosed with lung cancer. She never smoked in her life. She found out when she was 84 years old.

She didn’t even get properly diagnosed, either. They were telling her it was anxiety, so they were giving her anxiety pills. My grandma was saying that she was having difficulty breathing, but they never did scans. I don’t know if it was because of her age. She would go down to clean and couldn’t breathe. That’s when we thought that something wasn’t right. We ended up taking her to the emergency room. That’s when we found out that she had it in both of her lungs and, by then, she was stage 4.

Roxanne C. stage 3 EGFR+ non-small cell lung cancer
Roxanne C. stage 3 EGFR+ non-small cell lung cancer

My grandmother’s mutation and difficult treatment choices

We found out that Grandma had non-small cell lung cancer with a mutation. She was offered a pill. When she was told the side effects of the pill, she didn’t want to take it. After three months, she decided not to take anything. She lasted about a year. Grandma was 85.

Other than that, there’s no history of cancer in our family until I got my diagnosis. I’m the first grandchild of seven children to get the same cancer that my grandma got with the same mutation.

Delaying follow-up after the first CT scan

I did not take immediate action. I think it took me about a year. I didn’t have any symptoms. I actually Googled scar tissue and thought, “Maybe I got sick and didn’t realize it.” I didn’t do anything and went on with my life.

I didn’t know then what an oncologist was… After I Googled it, I said, ‘Why is she having me see a cancer doctor?’

Roxanne C., Stage 3 EGFR+ Non-Small Cell Lung Cancer Patient

Second CT scan and emergency referral to an oncologist

I started to feel something a year and a half after and it was my cyst again. I went back but saw a different gynecologist this time. She did a CT scan and found it again. At that appointment, she said, “You need to make an emergency appointment. We’re going to do this as an emergency for you to go to the oncologist.”

I didn’t know then what an oncologist was, so I had to Google because I didn’t know what kind of doctor that was. After I Googled it, I thought, “Why is she having me see a cancer doctor?”

Roxanne C. stage 3 EGFR+ non-small cell lung cancer
Roxanne C. stage 3 EGFR+ non-small cell lung cancer

First oncologist visit and biopsy decision

I still hadn’t made any connection to my grandmother’s lung cancer at all. When I went to the oncologist, the gynecologist sent all my CT scans to him, and his words to me were, “It’s so small, I don’t think that it’s cancer.” I said, “Okay, well, that’s good news. What do you think? Should we do a biopsy?” He said, “We can do a biopsy just because you’ve had it for this long.” I said, “Okay, let’s do a biopsy.”

When I went in a week later to have my biopsy done, my lung collapsed during the procedure, so I had to be there for about eight hours afterward. I was still clueless. I was thinking, “Okay, he’s saying no, so it’s probably not.”

There are so many things that you have to think about… There’s not enough information for us out there to help us acknowledge what’s happening with us.

Roxanne C., Stage 3 EGFR+ Non-Small Cell Lung Cancer Patient

Hearing the diagnosis alone as a single mom

I kept waiting for the MyChart notification. I realized that it had been about a week, and there was nothing yet. Then I got a call, and they said to come in. I’m a single mom, so I went in by myself. He came in, turned around, and said to me, “It’s cancer. It’s stage 1.” And I said, “You said that you thought it wasn’t cancer.” He said, “I’m sorry; it’s stage 1, so we’re going to get you in quickly for surgery.”

I didn’t even have time to set anything; it was so quick. It was four days after he told me. I didn’t have time to think about what would happen after. What happens when you have a lobectomy? I didn’t even know what was done to you. It’s not presented in a way where you know what’s going to happen to your body after or even during. Add to that having a small child at home and you’re your only person.

Roxanne C. stage 3 EGFR+ non-small cell lung cancer
Roxanne C. stage 3 EGFR+ non-small cell lung cancer

Shock, lack of information, and being the only parent

There are so many things that you have to think about. “Is this going to save my life? Wait, he’s saying I’m stage 1. What even is stage 1?” There’s not enough information for us out there to help us acknowledge what’s happening with us.

When I got into the car, I had to call family, which is far from me. My mom lives in Texas. They couldn’t believe it; it was shocking.

My family couldn’t come in. I had to sit in my room alone with my thoughts, and I didn’t even know what was going on.

Roxanne C., Stage 3 EGFR+ Non-Small Cell Lung Cancer Patient

Lobectomy during the pandemic and going through surgery alone

We set up the surgery, and it happened to be right after the pandemic. At that time, nobody could come in with you, so I had to say goodbye to my child in the parking lot. My lobectomy date was May 5, 2022, and I will always remember it because it was also a fiesta day.

I had to go through surgery alone because my family couldn’t come in. I had to sit in my room alone with my thoughts, and I didn’t even know what was going on. I had my lobectomy, where they removed the lower lobe of my right lung. I came out of surgery with an epidural. I didn’t even know they used epidurals until they wheeled me into the room.

Roxanne C. stage 3 EGFR+ non-small cell lung cancer
Roxanne C. stage 3 EGFR+ non-small cell lung cancer

Postoperative complications and sudden restaging to stage 3

My lung collapsed again, so they had to put a tube. I was so out of it, and no one could be there. It was mostly on the phone. A week later, the doctor said, “I removed some lymph nodes in your mediastinum. You had some cancer there, too, so you are now stage 3.”

Chemotherapy, radiation, and finding out about my biomarker

They threw chemotherapy and radiation at my plate, but I still didn’t know about my biomarker. I didn’t even have an idea. They didn’t tell me there’s biomarker testing. I wasn’t told much in that aspect.

I went through chemotherapy, which was very hard. I was allergic to cisplatin and one of the other drugs started to make me lose my hearing, so they had to cut it down; I didn’t have as much chemo at the end.

That’s when they told me about my biomarker. I was told, “After radiation, you’re going on this targeted immunotherapy for three years.”

When you’re going through chemotherapy and radiation, it’s so hard to think about the next step… For people who don’t have that support, it’s hard to keep track.

Roxanne C., Stage 3 EGFR+ Non-Small Cell Lung Cancer Patient

Learning about biomarkers while being overwhelmed by lung cancer treatment

He let me know that they were going to look for a biomarker, but I didn’t know what that meant. He said to me that if I had a certain marker, I would be able to take a pill that would help it not to come back, and that I would be fine. I remembered my grandma having the same issue with her biomarker and taking a pill.

When you’re going through chemotherapy and radiation, it’s so hard to think about the next step. There should be a person, like an advocate, someone who will be with you along the way because you get so scrambled up. There’s so much you have to handle. A lot of people have support systems, but some don’t. For people who don’t have that support, it’s hard to keep track. “What is this? What does this mean? What’s going to happen to me?”

Roxanne C. stage 3 EGFR+ non-small cell lung cancer
Roxanne C. stage 3 EGFR+ non-small cell lung cancer

Only hearing “stage 3 cancer” amid the information overload

If the doctor did tell me more, I don’t remember because I was taking in so much information. All I heard was that I have stage 3 cancer.

Researching targeted therapy side effects on my own

The way I see it is that I have done all the treatment. When I was offered the targeted therapy, I wasn’t told how it was going to affect me. I had to do a lot of research because I don’t feel like they gave us enough information about something that’s going to affect us. The targeted therapy affected me a lot.

Everything has taken a toll on my body. I’m a single mother and I don’t have a lot of support, which has been a big issue.

Roxanne C., Stage 3 EGFR+ Non-Small Cell Lung Cancer Patient

The double-edged sword of targeted therapy and finding support online

I feel like there should be more information. We’re sick, so we shouldn’t have to be searching. Some of us have support groups and some don’t. I found a lot of comfort in some Facebook groups, which made a world of difference, and a lot of them are on the same targeted therapy as me. ​

How I learned what EGFR meant

Other patients gave me more information than my own doctor. My oncologist said, “Your biomarker came back as EGFR, which means you get to use a targeted therapy pill,” and that was it. When you have these choices to keep you alive without any information, you do what you have to do.

Roxanne C. stage 3 EGFR+ non-small cell lung cancer
Roxanne C. stage 3 EGFR+ non-small cell lung cancer

Not feeling heard and worrying about my children’s risk

I felt that I had no voice. I wasn’t heard. If I asked questions, I wasn’t getting full answers. I even asked how it could be connected to my grandmother, because my grandmother had one of the doctors in the same office. I thought, “Could we see how my grandma’s lung cancer is related to mine? We’re in the same bloodline with the same cancer and the same mutation. How is that connected?” It didn’t get talked about and was brushed off. I have children, so I want to know how far this goes down, if it does. If it is a mutation, how do we find this out for my children to know what’s going on in their bodies?

Daily life being on targeted therapy as a single mom

It has been a struggle since the surgery. Everything has taken a toll on my body. I’m a single mother and I don’t have a lot of support, which has been a big issue. I feel that I’m not the only parent out there with children who need some kind of buddy system when you’re going through cancer. It could be any cancer, but it makes it a lot harder because you’re trying to live your life and raise a child at the same time.

If there were support for us single parents, it would be a lot easier to go through it, and the kids who are affected would have a better outcome.

Roxanne C., Stage 3 EGFR+ Non-Small Cell Lung Cancer Patient

The emotional and financial toll of cancer as a single parent

If a child has a sick parent, it’s hard for the child and the parent. Financially, I can’t work because I get sick so often. I try to be the best I can for my child. When I’m better, we go camping and go out for walks to get some normalcy back. But it’s still there. It’s an everyday process.

Once you’re told you have a stage of lung cancer, it doesn’t go away. It’s with you, whether you’re doing great or not. If there were support for us single parents, it would be a lot easier to go through it, and the kids who are affected would have a better outcome.

Roxanne C. stage 3 EGFR+ non-small cell lung cancer
Roxanne C. stage 3 EGFR+ non-small cell lung cancer

Support programs for my child and the need for support for parents

There are programs that I put my son in that have helped. They center on children with parents with cancer, which is amazing. But as parents, we need to be able to go cry somewhere. We need help to figure out how we’re going to pay rent.

My message to other single parents facing cancer

When I meet other parents who are going through what I’m going through and don’t have help, I feel how much of a struggle it is. We want the best for our kids and when we’re sick, we can’t give them our best. I want to find something or do something like that for my community. I’m not the only one going through cancer alone with their children. I feel like we need to have more support groups, even if they’re online. Maybe hold fundraisers for single parents who have a bill they need to pay and need a little help. Anything like that makes it easier to heal.

I’m not the only one going through cancer alone with their children. I feel like we need to have more support groups.

Roxanne C., Stage 3 EGFR+ Non-Small Cell Lung Cancer Patient

Stress, healing, and my desire to help other single parents

We can’t heal when we’re stressed. We want to, but we can’t. Our body isn’t allowing us, but our mind wants to. Our body’s trying to repair, so the less stress it’s under, the better.

I’d like to do something for single parents who are going through cancer alone. It’s something I feel passionate about. Having this diagnosis has empowered me. I’m a very strong woman now. I’ve gone through a lot. My kids see it.

Finding strength and purpose through cancer

I want to make a difference. That’s why we’re here, right? We’re here to make a difference, but we happened to get sick along the way. We just have to make the best of it.

Roxanne C. stage 3 EGFR+ non-small cell lung cancer
Roxanne C. stage 3 EGFR+ non-small cell lung cancer
Thank you for sharing your story, Roxanne!

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AbbVie

Thank you to AbbVie for their support of our independent 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 informed treatment decisions.

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

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Jennifer M. EGFR-positive lung cancer

Jennifer M., Lung Cancer, EGFR+, Stage 4 (Metastatic)



Symptoms: None per se; discovered during physical checkup for what seemed to be a sinus infection

Treatments: Radiation therapy (stereotactic body radiation therapy or SBRT), targeted therapy
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Samantha V. stage 2 lung cancer

Samantha V., Lung Cancer, EGFR+, Stage 2, Grade 3



Symptoms: Breathlessness, hoarseness, sinus infections, fatigue, pain in left side

Treatments: Clinical trial (targeted therapy)

Natasha L. stage 4 lung cancer

Natasha L., Lung Cancer, EGFR+, Stage 4



Symptoms: Hoarse voice, squeaky breathing, cough, weight loss, fatigue

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Jeff S., Lung Cancer, EGFR+, Stage 4 (Metastatic)



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Symptom: Nodule found during periodic scan

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Categories
Chemotherapy Cholecystectomy Hysterectomy Kidney Cancer Nephrectomy Ovarian PARP Inhibitor Patient Stories Splenectomy Surgery Treatments

Jennifer’s Mental Strength living with Kidney & Ovarian Cancer

Jennifer W. stage 3 kidney cancer stage 4 ovarian cancer

Jennifer’s Mental Strength Living with Stage 3 Kidney and Stage 4 Ovarian Cancer

In 2023, Jennifer was blindsided by a dual diagnosis of stage 3 kidney cancer and stage 4 ovarian cancer. Her life was turned upside down in an instant. But rather than let fear take over, she leaned into the present moment and shifted her mindset toward gratitude, growth, and healing.

Jennifer’s story began with a mysterious, rapidly growing abdominal swelling, which led her to urgent care, then the ER, and finally a whirlwind of scans and surgery. Despite being healthy, active, and symptom-free weeks earlier, Jennifer’s world changed overnight.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

At first, Jennifer felt emotionally frozen. She was never explicitly told, “You have cancer,” but the weight of the diagnosis was undeniable. She didn’t even learn the exact staging until much later, intentionally avoiding medical reports to protect her mental well-being. Eventually, she discovered her stage 3 kidney cancer and stage 4 ovarian cancer diagnoses, but by then, her focus was already on healing.

One of the most striking parts of Jennifer’s story is how deeply isolation impacted her. With her daughter temporarily living with her father and no family close by, Jennifer went through nearly every step of surgery and chemotherapy alone. Yet, she also found a quiet strength in that solitude. It forced her to self-advocate, connect with supportive professionals like Dr. James Kendrick, and trust her own resilience.

Jennifer W.

Physically, the process was intense. Jennifer underwent major surgery that removed multiple organs, including her kidney, gallbladder, spleen, and reproductive system. Still, she recovered surprisingly well and chose to forgo heavy pain meds out of caution, relying mostly on acetaminophen and the support of her spiritual community.

Her mental and emotional recovery became just as important. She prioritized walking, listening to her body, and staying emotionally grounded.

Jennifer emphasizes the importance of staying present, advocating for yourself, and refusing to let a diagnosis define who you are. While there are days she still feels afraid, especially around scan times, her approach remains one of empowerment and emotional honesty.

The road ahead includes continued monitoring, a PARP inhibitor regimen, and lifelong surveillance. But what keeps her grounded is her daughter, her deepened gratitude, and her determination not to let fear take the wheel.

Jennifer’s advice to others? Don’t let yourself spiral. Let your mindset lead with curiosity, strength, and presence. You’re allowed to feel everything, but you’re also capable of more than you know.

Watch the video to find out more about Jennifer’s story:

  • What the worst part of her cancer experience was (it wasn’t surgery or chemo)
  • Why she refused to look at her medical records after diagnosis.
  • What helped her cope when the hospital room was quiet and fear was loud.
  • Why she couldn’t say the C-word and how she found her strength.
  • How she turned fear, isolation, and uncertainty into radical gratitude and growth.
  • Name: 
    • Jennifer W.
  • Age at Diagnosis:
    • 52
  • Diagnosis:
    • Kidney Cancer and Ovarian Cancer
  • Staging:
    • Stage 3 (Kidney Cancer) and Stage 4 (Ovarian Cancer)
  • Mutation:
    • BRCA1
  • Symptom:
    • Abdominal bloating
  • Treatments:
    • Surgeries: hysterectomy, splenectomy, nephrectomy (left kidney removed), cholecystectomy
    • Chemotherapy
    • Targeted therapy: PARP inhibitor
Jennifer W.
Jennifer W.
Jennifer W.
Jennifer W.
Jennifer W.
Jennifer W.

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.

Jennifer W.
Thank you for sharing your story, Jennifer!

Inspired by Jennifer's story?

Share your story, too!

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Maria F. kidney cancer

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Symptoms: Bad cough, fatigue, nausea

Treatments: Chemotherapy, radiation, immunotherapy
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Alexa D., Kidney Cancer, Stage 1B



Symptoms: Blood in the urine; lower abdominal pain, cramping, back pain on the right side

Treatment: Surgery (radical right nephrectomy)
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Bill P

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Symptoms: Kidney stone, lower back pain, sore/stiff leg, deep vein thrombosis (DVT) blood clot

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Burt R. feature photo

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Symptom: None; found the cancers during CAT scans for internal bleeding due to ulcers
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Heather M., Epithelial Ovarian Cancer, Stage 2

Symptoms: Extreme bloating, pinching pain in right side of abdomen, extreme fatigue
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Jodi S., Epithelial Ovarian Cancer, Stage 4

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Categories
Chemotherapy Hysterectomy mTOR inhibitor Patient Stories PEComa (Perivascular Epithelioid Cell tumor) Radiation Therapy Sarcoma Soft Tissue Sarcoma Surgery Targeted Therapy Treatments

Living with a Rare Malignant PEComa Cancer

Michelle C. and Jolene S. malignant PEComa

How Michelle and Jolene Each Live with Malignant PEComa, an Incredibly Rare Type of Cancer

Michelle and Jolene’s stories are about resilience, advocacy, and the power of awareness. Both women were initially diagnosed with other conditions with overlapping symptoms to their cancer diagnosis. Michelle had excessive bleeding that was attributed to fibroids, while Jolene attributed her symptoms to menopause.

With the COVID-19 pandemic adding to medical delays, neither of them received an immediate diagnosis. They both went through hysterectomies to treat their suspected diagnoses, leading to the shocking revelation that they each had malignant PEComa cancer (perivascular epithelioid cell tumor), a rare and incurable form of cancer.

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

For both women, the diagnosis came as a gut-wrenching surprise. Jolene recalls waking up from surgery, groggy from anesthesia, only to learn that things didn’t look right. Michelle, a researcher by nature, turned to Google for answers, even though her doctors warned against it. The fear of the unknown weighed heavily on them, but they knew they had to press forward.

Michelle C. feature profile

The reality of treatment set in quickly. There is only one FDA-approved therapy for malignant PEComa cancer, a drug that became available just in time for Jolene to start in 2022. Michelle initially had a strong response to it and she remains stable today. Still, both women live with uncertainty. Jolene, a mother, made it her mission to be present for her daughters’ milestones, focusing on each day rather than an unknown future. Michelle, on the other hand, has embraced self-advocacy, meticulously documenting her medical journey so others can learn from it.

Michelle and Jolene are determined to raise awareness of malignant PEComa cancer. Unlike breast cancer or leukemia, PEComa is virtually unknown, even among medical professionals. To note, PEComas are usually benign (noncancerous) and localized, but some are malignant (cancer), which is what both Michelle and Jolene were diagnosed with. They believe that through advocacy and exposure, more people will recognize the symptoms early and push for proper diagnoses.

Their advice is simple yet powerful: never lose hope. Every case is different, and statistics don’t define a person’s future. They emphasize trusting one’s medical team, staying informed, and, most importantly, finding a support system.

Watch the video to find out more from Michelle and Jolene about:

  • How a selfless act of love led to an unexpected diagnosis.
  • The one FDA-approved drug that stands between them and an uncertain future.
  • Why raising awareness for rare cancers like malignant PEComa is more important than ever.
  • The advice they have for everyone who’s facing a tough diagnosis.
Jolene S. feature profile
Michelle C.
  • Name: Michelle C.
  • Diagnosis:
    • Malignant PEComa cancer (perivascular epithelioid cell tumor)
  • Staging:
    • Stage 4
  • Symptoms:
    • Heavy bleeding
    • Asymptomatic lung masses discovered through kidney donor evaluation
  • Treatments:
    • Surgery: hysterectomy
    • Targeted therapy: mTOR inhibitor
  • Name: Jolene S.
  • Age at Diagnosis:
    • 51
  • Diagnosis:
    • Malignant PEComa (perivascular epithelioid cell tumor)
  • Staging:
    • Stage 4
  • Symptoms:
    • Inability to urinate
    • Bleeding from uterus
  • Treatments:
    • Surgery: hysterectomy
    • Radiation
    • Chemotherapy
    • Targeted therapy: mTOR inhibitor
Jolene S.
Table of Contents
  1. The Red Flags for Michelle and Jolene
  2. Hysterectomy Uncovering Their Cancer
  3. Finding Out They Have Stage 4 Cancer
  4. Discussing The Only Treatment Option for Malignant PEComa Cancer
  5. Looking at the Future Living with Malignant PEComa Cancer
  6. What Michelle Has Learned
  7. Jolene’s Biggest Advice
  8. Raising Awareness for PEComa Cancer

Michelle and Jolene were both diagnosed with an incredibly rare type of cancer. Michelle was diagnosed in 2023, while Jolene was diagnosed two years prior. They received a diagnosis so rare that it affects less than one out of 1 million people each year: malignant PEComa (perivascular epithelioid cell tumor). According to the National Organization for Rare Disorders, this diagnosis is “most likely to occur in middle-aged females, with some studies reporting PEComas are five to seven times more likely in females than males.”

I was experiencing some bleeding… it continued to get worse to the point where I was sent to the emergency room because I was bleeding so much.

Jolene

The Red Flags for Michelle and Jolene

Michelle: Originally, I had fibroids, so I experienced excess bleeding during my menstrual cycle. At that time, I thought it wasn’t typical, so I called the doctor and they said that irregular menstrual cycles are normal sometimes.

Jolene: I was experiencing some bleeding and I thought it was possibly related to starting menopause. It was also during COVID, so I wasn’t going to the doctor a lot. I didn’t worry about it and it continued to get worse to the point where I was sent to the emergency room because I was bleeding so much. They did some scans, thought it was a fibroid, and proceeded from there.

Michelle C.

To treat each of their other diagnoses, both Michelle and Jolene opted for hysterectomies, a surgical procedure that removes the uterus. The procedure would uncover cancer for both of them.

Jolene S.

Hysterectomy Uncovering Their Cancer

Jolene: I had an early morning surgery and they told me how long it would possibly take. I remember coming out of the anesthesia and seeing the clock in the recovery room — it was three hours later than I’d thought. My surgeon told me that when they started the surgery, things didn’t look right, so she sent a sample off for biopsy. They didn’t know what kind of cancer it was, but they knew it was cancer. I was so out of it that I just accepted it.

Michelle: I was scared. I’m the type of person who when I don’t know what something is, I have to Google it and look it up, which my doctors don’t recommend. They told me that Google is not my friend. But I always want to learn. I love reading and doing my research. I did Google it and it was scary. My main concern was the life expectancy.

Michelle and Jolene received the news no one ever wants to hear: the cancer is back and now it’s Stage 4.

I was shocked because I wasn’t feeling short of breath or noticing anything strange. I didn’t have any symptoms.

Michelle

Finding Out They Have Stage 4 Cancer

Jolene: I can’t even describe how excruciating the pain was. Internal bleeding is one of the worst pains that you can feel. I wasn’t at the main hospital because I went to the hospital where I thought I would be able to get in faster and they performed a procedure to slow down the bleeding.

I was in shock. I was diagnosed in May. That happened in January and in February, I had another surgery. The tumor was fairly large. Recovery was difficult. It was painful and took quite a while, but the margins were clear. No lymph node involvement. At that time, the doctor told me that I was now stage 4 and it wasn’t curable.

Jolene S.
Michelle C.

Michelle: My brother was suffering from renal failure. He didn’t want to talk about it, but I went behind his back and got tested to see if I was a potential match. I went through the donor evaluation, which is a pretty rigorous testing process to make sure that the donor is healthy enough to donate. At the end of the evaluation, they did a chest X-ray and found multiple masses in my lungs. I was shocked because I wasn’t feeling short of breath or noticing anything strange. I didn’t have any symptoms.

Jolene: You’re always living in fear, just knowing how quickly it came back and how severely the first time. So I can give you an example. Three weeks ago, I felt a lump kind of in my upper leg, and then a week later I that was very tender. I felt another one in like my armpit area. And those areas aren’t really covered by the CT scans I get every three months.

So to say that I was a mess is putting it nicely. This past week, they scheduled a PET scan for me right away. I don’t have the final report, but the nurse practitioner called me and said it looks good.

It’s really hard not to react to any little lump [or] bump, because you know that catching it more quickly is probably to your benefit.

After Michelle and Jolene found out about the malignant PEComa, they learned what their future looked like. The FDA had only approved one therapy for malignant PEComa, approving nab-sirolimus in 2021 for patients with “locally advanced unresectable or malignant PEComa.” (FDA)

Discussing The Only Treatment Option for Malignant PEComa Cancer

Michelle: I asked, “What’s going to happen? Is my hair going to fall out?” When you think about chemotherapy, you think of the worst. Am I going to be having extreme sickness? Am I going to lose my hair? Am I going to be able to function? Those were my main concerns. I was okay until that appointment. I was apprehensive, but I was okay until we started discussing it because then it was real. I cried at that appointment.

Michelle C.
Jolene S.

Jolene: It was approved by the FDA a month before I started it, so I couldn’t be more thankful that they were able to develop that when they did. I started in April 2022 and told my daughters that it isn’t curable, that I’ll be on this medication, and that I will be with them for as long as I can. That’s what I continue to tell them, that I will be here as long as I can be. I honestly didn’t think I would be here because based on the clinical trials, it typically works for a year and a half to two years.

Because this is a rare and incurable cancer, the goal is to maintain quality of life and stability.

Michelle

Michelle: That was an, “Oh, s***,” moment. I thought, “One drug. Great.” My mind always goes far, so I thought, “What happens if it doesn’t work? What do I do?”

I’m grateful that there is a drug because that drug wasn’t available in 2015 when I received my initial diagnosis. If my disease was malignant from the beginning, I don’t know if they would have been able to treat it. Initially, I had an amazing response to the drug. I had rapid and significant shrinkage of tumors, and now I’m stable. Because this is a rare and incurable cancer, the goal is to maintain quality of life and stability.

Michelle C.
Michelle C.

Looking at the Future Living with Malignant PEComa Cancer

Michelle: In the beginning, I felt doomed. Am I going to live to see retirement? Am I going to be able to do some of the things I want to do? That was concerning. The unknown was scary. Nobody knows when their time is up, but that’s always in the back of your mind with cancer. I don’t necessarily dwell on it, but every once in a while, it’ll pop up. What do I do? Do I retire now or do I make sure that I have something for later? I’m still working part-time because I need some kind of normalcy in my life. I need structure and a purpose.

My daughters drive me to keep going… I want to be here and get my girls in as good of a place as they can be.

Jolene

Jolene: My daughters drive me to keep going and the fact that there isn’t another option. I will take what I have right now with the limitations that I have, which are the side effects. But given the alternatives, I want to be here and get my girls in as good of a place as they can be. I can’t imagine losing a parent as a teen or early 20s because my parents are still alive and doing well, and they’re a big part of my support system.

Jolene S.
Michelle C.

What Michelle Has Learned

Michelle: The one good thing out of this is I learned to advocate more for myself. I learned how to ask more questions and how to push a little bit more. In the beginning, I said if this was going to kill me, I want everybody to know about it. Not that I want to donate my body to science, but I want people to see my records and learn something. I take meticulous notes. It sounds morbid, but when I go, I’m going to have someone hand over my binder with all of my notes and paperwork.  

Jolene’s Biggest Advice

Jolene: Never give up hope. Don’t look at other people who might have the same diagnosis and assume that you will follow the same path. I have sisters who are nurses, and they told me not to Google and to look at what has happened to other people. Your care team knows you the best and they’re focused on you. You don’t know what’s going to happen. I feel like right now at least, I’m proof of that.

When it came back in my liver, my goal was to be around for my youngest daughter’s high school graduation and my middle daughter’s college graduation, and those were in May and June 2024. I’m still hanging on. I hope and pray that I will be around for a long time to come but at the same time, facing the reality that we don’t know.

Jolene S.

People don’t know what PEComa is… Hopefully, people will become curious and talk about it more.

Michelle
Michelle C.

Raising Awareness for PEComa Cancer

Michelle: I want people to be aware of PEComa. I want people to know what it is. When somebody says breast cancer or leukemia, people know what it is, but people don’t know what [malignant] PEComa is.

There are a decent amount of people who I’ve run into that say they know what a sarcoma is, which is rare also, but the subtype is ultra-rare. I want people to know what it is and to become curious. If they know what it is and people talk about it, there’s more exposure. Awareness is very important to me. Hopefully, people will become curious and talk about it more.

Michelle C. and Jolene S. feature profile
Thank you for sharing your stories, Michelle and Jolene!

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Share your story, too!

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Ashley S., Adrenal Cancer, Stage 4



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Ashley P. feature profile

Ashley P., Adrenal Cancer, Stage 4



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...
Cassandra R. stage 4 adrenal cancer

Cassandra R., Adrenal Cancer (Adrenocortical Carcinoma), Stage 4



Symptoms: None; inconclusive bloodwork during a blood test to determine her baby’s gender

Treatments: Surgery (adrenalectomy), radiation therapy, chemotherapy, immunotherapy
...

Hope L., Adrenal Cancer, Stage 2



Symptoms: High blood pressure, butterfly rash, joint pain and swelling, rapid heart rate

Treatments: Surgery (adrenalectomy), chemotherapy
...
Janelle C. stage 4 adrenal cancer

Janelle C., Adrenal Cancer (Adrenocortical Carcinoma), Stage 4



Symptoms: Excessive thirst and water intake, interrupted sleep due to waking to drink and urinate, suspicious weight gain despite working out

Treatments: Surgeries (adrenalectomy, nephrectomy), chemotherapy

...
Regina J. lung neuroendocrine tumor

Regina J., Lung Neuroendocrine Tumor



Symptoms: Wheezing, back pain, coughing that sometimes produced blood

Treatment: Surgery (partial lung resection)
...
Tabbie V. neuroendocrine pancreatic cancer

Tabbie V., Pancreatic Neuroendocrine Tumor (pNET)



Symptoms: Abdominal pain, unusual organ "inflammation" feeling when walking, fatigue
Treatments: Chemotherapy (oral and IV), surgeries (Whipple procedure or pancreaticoduodenectomy, liver resection or partial hepatectomy)
...
Hayley O. neuroendocrine pancreatic cancer

Hayley O., Pancreatic Neuroendocrine Tumor (pNET)



Symptoms: Severe right-sided pelvic pain, nausea, diarrhea
Treatment: Surgery (pancreaticoduodenectomy or Whipple procedure)
...
Drea E. stage 3 neuroendocrine tumor

Drea E., Gastric Neuroendocrine Tumor (gNET), Stage 3, Grade 1



Symptoms: Fainting spells, fatigue, dizziness, anemia, shortness of breath, absence of menstruation, unexplained weight loss, night sweats
Treatment: Surgery (total gastrectomy with a Roux-en-Y reconstruction)
...
Hunter D. desmoplastic small round cell tumors

Hunter D., Desmoplastic Small Round Cell Tumors (DSRCT)



Symptoms: Abdominal pain, nausea, vomiting, fatigue

Treatments: Surgeries (debulking surgeries), chemotherapy, radiation therapy (radioimmunotherapy, under a clinical trial)
...

Gianna C., Desmoplastic Small Round Cell Tumors (DSRCT)



Initial Symptoms: Urinary tract infection (UTI), consistent pressure in stomach, stomach pains, passing out

Treatment: Chemotherapy, surgery
...
Hamish S. feature profile

Hamish S., Desmoplastic Small Round Cell Tumors (DSRCT)



Symptoms: Persistent fatigue, nausea, weight loss, hard abdominal lump

Treatments: Interval-compressed chemotherapy, surgeries (cytoreductive surgery, peritonectomy, HIPEC, right hemicolectomy, low anterior resection)
...

Joe F., Desmoplastic Small Round Cell Tumors (DSRCT)



Symptoms: Mild abdominal pain, fatigue

Treatment: Surgery, chemotherapy, radiation
...

Caroline C., Gestational Trophoblastic Neoplasia & Placental Cancer, Stage 3



Symptoms: Morning sickness & an unusually high beta hCG

Treatment: EMACO chemotherapy
...
Shannon W. choriocarcinoma

Shannon W., Choriocarcinoma



Symptoms: Molar pregnancy, vaginal bleeding, overall feeling of unwell, cramping, weight loss, elevated HCG level, feeling bloated
Treatments: Chemotherapy, surgeries (D&C, total hysterectomy)
...
Categories
Chronic Lymphocytic Leukemia (CLL) Leukemia Patient Stories Targeted Therapy Treatments

How I Learned to Live with CLL—And Stop Letting It Control Me

Margie H.

How I Learned to Live with CLL—And Stop Letting It Control Me

Margie was diagnosed with a type of blood cancer that affects the bone marrow and blood. One day, she noticed a swollen lymph node she had never seen before. Doctors ordered a scan and biopsy of the lump. That’s when she got the news no one wanted to hear: she had a rare blood cancer called chronic lymphocytic leukemia, or CLL.

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Margie H.

Margie’s diagnosis was a rare blood cancer, chronic lymphocytic leukemia (CLL). There’s no official cure but there are a lot of treatment options.

  • Name: Margie H.
  • Diagnosis:
    • Chronic lymphocytic leukemia (CLL)
  • Symptoms:
    • Large lymph node in her neck
    • Fatigue as the disease progressed
  • Treatment:
    • Targeted therapy
Margie H.
AbbVie

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

Table of Contents
  1. Introduction
  2. How She Found Out She Had Cancer
  3. Finding the Right Doctor
  4. Learning She Wouldn’t Get Treatment Right Away
  5. Noticing More Symptoms from the Cancer
  6. Her Treatment Experience
  7. Being Off-Treatment
  8. Words of Advice

It’s hard to tell your kids that you have cancer…

Introduction

I live in Southern California. I had a lymph node in my neck that was enlarged. I was diagnosed with chronic lymphocytic leukemia (CLL) in 2019. They gave it a little positive spin and told me that if I had to have cancer, it was the best kind to have.

How She Found Out She Had Cancer

I noticed a lump in my neck, so I went to my primary doctor. She didn’t know what it was, so she sent me for a CAT scan. I had a biopsy and that’s how it was diagnosed.

I didn’t have any other symptoms, so it was quite a shock. I’m relatively healthy, so to have someone say that I had cancer, I thought, “That can’t be,” but it was.

It’s very scary. One of the hardest things for me was telling my kids. It’s hard to tell your kids that you have cancer, but they were very supportive. I noticed the lump in September and was diagnosed in November, so it was very quick.

Margie H.
Margie H.

Finding the Right Doctor

Kaiser was willing to send my information for a second opinion. I ended up with the head of the department of chronic lymphocytic leukemia (CLL) at Dana-Farber Cancer Institute in Boston and I thought that was God’s doing. He was even involved in the research of the medication that I eventually took. Before he looked at my information, he said, “What’s your plan? What’s your goal? Do you want to have more life in your life or do you want to have a longer life?”

My daughter got a list of all the treatments and medications from a niece who’s a doctor. When I was with my family, we went through everything. We had a couple of nurses in the family, so we had some medical knowhow. Because I had high blood pressure and was taking blood thinners, we found all the ones that I was eligible for and talked about the side effects.

The specialist said, “I looked at everything. You need one more test and if you don’t have a mutation, then this is exactly what you should take. If you come out mutated, this is what you should take.” I took his report to my oncologist and that’s the way we went.

Because the side effects of the medication can be bad, they don’t want to start treatment until your symptoms are much more severe

Learning She Wouldn’t Get Treatment Right Away

I was on watch and wait. Some people call it watch and worry. Because the side effects of the medication can be bad, they don’t want to start treatment until your symptoms are much more severe, so I wasn’t treated until June 2021.

I came up with an idea during watch and wait. Think of it as boot camp. When you go to boot camp, they get you physically strong and when you’re physically strong, you do exercises to keep it that way. If you’re not, then you start.

Next, they teach you what you need to do if you have to go into battle, which is what you need to learn about chronic lymphocytic leukemia. The next thing they do is build a community around you. I didn’t recognize it at the time, but those were the steps I took. If a person would use watch and wait as a boot camp rather than as a time to worry, it would make a difference.

Margie H.
Margie H.

Noticing More Symptoms from the Cancer

After a year and a half, I developed more lymph nodes. A lot of them were on my stomach, so they were concerned about crowding the main organs. Other than that, they wouldn’t have started treatment.

You’re supposed to watch out for fatigue and night sweats. I didn’t have night sweats, but I experienced fatigue by early spring of 2021. I measured how I was doing by how I fared when I hiked. If I could still hike as far as I could or as fast as I could, if I could get up the hill, then I was still okay. However, I noticed a difference in late spring that year.

We had a family meeting after my grandson’s wedding and we decided that I should do the targeted, time-limited medication.

Fatigue was the only thing that I felt that made a difference. Eventually, I told a couple of my hiking friends. I also put in a prayer request at church, so my church family knew.

I see myself as a strong person. When something happens to you, you think that will diminish your strength and people will start looking at you differently because you aren’t as strong as you thought you were.

There are several types of treatments. I didn’t qualify for some because I’m taking blood pressure medication and blood thinners. There’s time-limited therapy and medication that you’re on for life or until it quits working and then they put you on a different one. We had a family meeting after my grandson’s wedding and we decided that I should do the targeted, time-limited medication.

Margie H.
Margie H.

Her Treatment Experience

I was a textbook case. It was fantastic. I had no side effects. I had six infusions in the beginning. One month after I started my infusions, I started my oral medication.

There are serious side effects to the oral medication. Tumor lysis syndrome is very dangerous. It can affect your kidneys. They put you in the hospital for the oral medication. I was in the hospital for three days as they put me on step-up dosing. It couldn’t have gone more perfect, so I’m very blessed.

Why worry about the things that we can’t change? If it comes back, I’ll be treated again.

Being Off-Treatment

I have blood tests every three months and see the oncologist every six months. I have no symptoms. Everything’s good. I couldn’t ask for anything better.

I don’t even think about it anymore. Before treatment, it used to be like having a time bomb that you’re waiting to go off. But since I’ve had treatment, I rarely even think about it — only when I have my blood test or oncologist appointment. I’m a very positive person.

I listen to a Christian radio station in my car and I heard something that said, “Change the things you can and adjust your attitude to the things you can’t.” Why worry about the things that we can’t change? If my chronic lymphocytic leukemia comes back, I’ll be treated again. It’s likely to come back. I’m not cured. I’m in remission or what they call undetectable minimal residual disease (uMRD).

Margie H.
Margie H.

Words of Advice

CLL isn’t a death sentence. Be your own advocate. Go and find the information. I know there are other sources, but HealthUnlocked was so fantastic for me. Build a good support system.

I want people to be encouraged and not discouraged. There are so many diseases out there that are so much worse than what I have and what I went through. We have to count our blessings when we can.

AbbVie

Special thanks again to AbbVie for supporting our independent patient education content. The Patient Story retains full editorial control.

Margie H.
Thank you for sharing your story, Margie!

Inspired by Margie's story?

Share your story, too!

More Chronic Lymphocytic Leukemia (CLL) Stories

Lynn S. chronic lymphocytic leukemia

Lynn S., Chronic Lymphocytic Leukemia (CLL)



Symptom: Elevated white blood cell count

Treatments: Chemotherapy, targeted therapy (BTK inhibitor)
Serena V.

Serena V., Chronic Lymphocytic Leukemia (CLL)



Symptoms: Night sweats, extreme fatigue, severe leg cramps, ovarian cramps, appearance of knots on body, hormonal acne

Treatment: Surgery (lymphadenectomy)

Margie H.

Margie H., Chronic Lymphocytic Leukemia



Symptoms: Large lymph node in her neck, fatigue as the disease progressed

Treatment: Targeted therapy

Nicole B., Chronic Lymphocytic Leukemia



Symptoms: Extreme fatigue, night sweats, lumps on neck, rash, shortness of breath


Treatments: BCL-2 inhibitor, monoclonal antibody
Categories
Breast Cancer Chemotherapy Hormone Therapies Lumpectomy Metastatic Patient Stories Radiation Therapy Surgery Targeted Therapy Treatments

Nina’s Stage 4 Metastatic Breast Cancer Story

Nina M. feature profile

Nina’s Stage 4 Metastatic Breast Cancer Story

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Nina M. feature profile

Nina, diagnosed with stage 4 metastatic breast cancer at 34, shares her experience of navigating the complexities of her illness and advocating for her health. She initially noticed a hardening under her left armpit. A year later, the lump grew and her breast showed signs of dimpling. A mammogram and ultrasound finally revealed an abnormal lump and a biopsy confirmed stage 3 breast cancer. Shortly after, scans showed the cancer had spread to her spine, escalating her diagnosis to stage 4.

Nina quickly shifted into a problem-solving mode, managing her treatment plan, scheduling appointments, and staying organized amidst the overwhelming process. She expressed how emotionally challenging it was to balance her feelings while supporting the emotions of those around her.

Her treatment plan included chemotherapy, followed by a lumpectomy, and radiation on both her breast and spine. She continues to undergo regular infusions and medications to keep the cancer at bay. While the chemotherapy caused a lot of side effects, including hair loss, neuropathy, mouth sores, fatigue, and brain fog, she found strength in adapting to these challenges. Despite needing to remain in treatment indefinitely, her current scans show no evidence of disease.

One of the most challenging aspects of her cancer experience was induced menopause, which affected her physically and emotionally, particularly the loss of her ability to carry children. The lifestyle changes brought about by cancer were also difficult for Nina. However, she found solace in documenting her experience online, helping others understand the realities of living with cancer, especially young women and women of color.

Sharing her story became a way to raise awareness and a form of therapy. Nina’s advice to others is to advocate for themselves and to practice radical acceptance of the life changes that cancer brings. She emphasizes the importance of self-love and reevaluating what truly matters during difficult times.

  • Name: Nina M.
  • Diagnosis:
    • Breast Cancer
  • Staging:
    • Stage 4
  • Symptoms:
    • Hardening under the armpit
    • Lump & dimpling in the left breast
  • Treatments:
    • Chemotherapy
    • Surgery: lumpectomy
    • Radiotherapy
    • Hormone-blocking medication
    • Targeted therapy
Nina M.
Nina M.
Nina M.
Nina M.
Nina M.
Nina M.
Nina M.

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.

Nina M. feature profile
Thank you for sharing your story, Nina!

Inspired by Nina's story?

Share your story, too!

More Metastatic Breast Cancer Stories

Christina W. breast cancer

Christina W., Breast Cancer, Stage 4 (De Novo Metastatic), HER2+, ER-



Symptoms: Extreme fatigue, head and neck felt swollen, clogged lymph nodes, appearance of a lump on the breast

Treatments: Monoclonal antibodies (trastuzumab, pertuzumab), radiation therapy
Deb O. breast cancer

Deb O., Breast Cancer (De Novo Triple Positive and ER+ HER-)



Symptoms: First instance: appearance of lump that later on increased in size, orange peel-like skin around inverted nipple, persistent ache under right arm; second instance: appearance of lump

Treatments: First instance: chemotherapy, targeted therapy, hormone therapy; second instance: surgery (mastectomy), chemotherapy, radiation therapy, CDK 4/6 inhibitor
Tammy U. metastatic breast cancer

Tammy U., Metastatic Breast Cancer, Stage 4



Symptoms: Severe back pain, right hip pain, left leg pain

Treatments: Surgeries (mastectomy, hip arthroplasty), chemotherapy, radiation therapy, hormone therapy, targeted therapies (CDK4/6 inhibitor, antibody-drug conjugate)
Nicole B. triple-negative breast cancer

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



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

Treatments: Chemotherapy, surgeries (installation of chemotherapy port, mastectomy with flat aesthetic closure), targeted therapy (antibody-drug conjugate), hyperbaric oxygen therapy, lymphatic drainage
Dalitso N. breast cancer

Dalitso N., IDC, Stage 4, HER+



Symptoms: Appearance of large tumor in left breast, severe back and body pain

Treatments: Surgery (hysterectomy), vertebroplasty, radiation therapy, hormone therapy, clinical trial
Marissa S. breast cancer

Marissa T., ILC, Stage 4, BRCA2+



Symptoms: Appearance of lump in right breast, significant fatigue, hot flashes at night, leg restlessness leading to sudden, unexpected leg muscle cramps

Treatments: Chemotherapy, hormone therapy, PARP inhibitor, integrative medicine
Janice C. triple-negative breast cancer

Janice C., Triple-Negative Metastatic Breast Cancer, Stage 4



Symptoms: Appearance of lump in left breast near sternum, fatigue, bone and joint pain

Treatments: Surgery (lumpectomy), radiation therapy (brachytherapy), chemotherapy
Dana S. invasive ductal carcinoma breast cancer

Dana S., IDC, Stage 4 (Metastatic)



Symptom: Appearance of large lump in left armpit

Treatments: Targeted therapy, hormone blockers, bone infusions
Categories
Abemaciclib (Verzenio) Arimidex (anastrozole) Breast Cancer Chemotherapy Clinical Trials Hormone Therapies Invasive Ductal Carcinoma letrozole Lumpectomy Patient Stories Radiation Therapy Ribociclib (Kisqali) Surgery Targeted Therapy Treatments

Samantha’s Stage 4 ER+ PR+ HER2+ IDC Breast Cancer Story

Samantha L.

Samantha’s Stage 4 ER+ PR+ HER2+ IDC Breast Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Samantha L.

Samantha’s journey with stage 4 breast cancer began in March 2019 when she was 22. Living in Virginia with her husband and young daughter, she first noticed a lump in her breast. Initially dismissed by her primary care physician and an ultrasound tech as an infection, a biopsy eventually confirmed her cancer diagnosis. Despite the initial belief that her cancer was at stage 1, further tests revealed it had spread, making it stage 4 breast cancer.

Her treatment plan involved chemotherapy, which she had to stop early due to severe neuropathy, followed by a lumpectomy, radiation, hormone therapy, and targeted therapy. Despite significant side effects, she managed to maintain no evidence of disease (NED) for some time. After two years of hormone therapy, Samantha decided to take a break to try for a baby, which led to a successful pregnancy in April 2022.

However, during her pregnancy, she and her family moved to Alaska. While there, Samantha’s cancer recurred, causing severe back pain due to lesions in her spine and pelvis. Unable to travel back to Virginia without stabilizing her spine, she underwent surgery and later radiation before returning to her oncologist for a new treatment plan. She joined a clinical trial involving a new radium drug for bone metastases but had to leave it due to mixed results.

Samantha then resumed hormone therapy and targeted therapy with different drugs than before. Throughout her treatment, she emphasized the importance of careful decision-making, the support of her family, and maintaining a positive outlook.

  • Name: Samantha L.
  • Diagnosis:
    • Breast Cancer
    • Invasive ductal carcinoma (IDC)
    • ER+
    • PR+
    • HER2+
  • Staging:
    • Stage 4
  • Initial Symptom:
    • Lump in breast
  • Treatment:
    • Chemotherapy
    • Surgeries: Surgery: lumpectomy, spinal surgery (fractured vertebrae)
    • Radiation
    • Hormone therapy: anastrozole & letrozole
    • Targeted therapy: abemaciclib & ribociclib
Samantha L.

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.

Table of Contents
  1. Introduction
  2. Pre-diagnosis
  3. Diagnosis
  4. Treatment
  5. Fertility Post-Treatment
  6. Moving to Alaska
  7. Cancer Recurs
  8. New Treatment Plan
  9. Treatment Decision-Making
  10. Having a Strong Support System
  11. Words of Advice

I went to my regular doctor who said it was nothing. I was so young that it couldn’t be breast cancer.

Introduction

My husband and I live in Virginia and have a 1-½-year old daughter. I was diagnosed with stage 4 breast cancer at 22 in March 2019.

Pre-diagnosis

Initial Symptoms

It was the day after Valentine’s Day. My husband and I weren’t married yet. He was my boyfriend at the time. My mom loves to celebrate Valentine’s with the family. The celebration had ended and we were watching TV. He hugged me from behind and squeezed me tight. When he did, I felt some pain in my left breast. I realized there was a lump.

Samantha L.
Samantha L.
PCP Appointment

I went to my regular doctor who said it was nothing. I was so young that it couldn’t be breast cancer. They told me to put a warm compress on it, but that didn’t do anything. They put me on antibiotics thinking it was an infection and, of course, that didn’t help.

They finally sent me for an ultrasound and the ultrasound tech looked at it and said, “This looks like an infection. You’re 22 and I’ve never seen breast cancer in a 22-year-old, so that’s not what it is. But just in case, you can get a biopsy if you want.”

Getting a Biopsy

I almost left the hospital and went home without doing anything about it. He said it wasn’t urgent, but there was an opening so I got the biopsy done.

When you’re 22 and recently graduated college, cancer is not on your mind at all.

Diagnosis

Biopsy Results

The results revealed abnormal cells, so I had to go in for a second biopsy. That was the one that told us that I had breast cancer.

Reaction to the Diagnosis

When you’re 22 and recently graduated college, cancer is not on your mind at all.

My breast surgeon called me on the day the abnormal cells came back and said, “You need to come in again.” I went in and that’s when she started to prepare me that it could be cancer. She ended up calling me when she found out that it was.

She told me she cleared out an appointment for me at the end of the day and that we should get more information about the hormone receptors at that point. She scheduled an appointment so that I could talk to my family and get all of our questions written down before the appointment.

Samantha L.
Samantha L.

Treatment

Discussing the Treatment Plan

I didn’t know anything. I thought it was stage 1. I went through it in stages, always thinking that it was the least concerning thing. I don’t think there’s a big shock. It came about over time as we had more questions and learned more about it.

She was suspicious right when I walked in. She wanted to check the lymph nodes under my arm because that’s the first place cancer spreads. My boyfriend, my parents, and a friend who’s a doctor came to the appointment with me. They all had questions and wanted to help me and know everything. They went into a separate room and she took me back and did the biopsy under my arm.

When we went back, she laid out a plan. It was March and she said we should be done with all active treatment by Christmas. She said the standard is chemotherapy and then surgery, which was going to be a lumpectomy or a mastectomy, and then radiation. Since my cancer was hormone-positive, I would be on hormone therapy for some years after.

The spot was more contained. They said it was probably cancer because the chemo shrunk it. Then we realized I was stage 4 breast cancer.

Chemotherapy

There were a few hiccups. I had to stop chemo early because Taxol (paclitaxel) was causing neuropathy in my fingers. It got too bad and my oncologist didn’t want permanent nerve damage to happen. I was a little bummed about stopping Taxol early because it made me feel like I wasn’t doing everything that I could, but it’s what happens when your side effects get too bad.

Originally, all of my doctors wanted me to do a double mastectomy because I was young. Younger women tend to choose a double mastectomy because it gives people peace of mind to make sure all of the breast tissue is removed and there’s no place for cancer to grow.

I had a scan where they saw a spot in one of my ribs. They weren’t positive it was cancer and it was in a weird location that they wouldn’t be able to biopsy it. We talked to neurosurgeons about removing it, but we weren’t sure if it was cancer.

When I had chemo and scans again, the spot was more contained. They said it was probably cancer because the chemo shrunk it. Then we realized I was stage 4 breast cancer.

Samantha L.
Samantha L.
Lumpectomy

At this point, mastectomy isn’t going to matter too much because the cancer has already spread past the breasts. If I do a lumpectomy, the recovery time is shorter so I could get started with radiation immediately after. They wanted to do radiation on the rib to target the spot that was seen in the scan since it couldn’t be removed with surgery.

I ended up doing a lumpectomy, which is weird because when you think about cancer when you don’t have it, you think you’d do the most drastic option possible. But when you’re faced with your options, you’re not always picking that for yourself and your situation.

Radiation

After the lumpectomy, I did radiation and finished that in November.

My case wasn’t as bad of a stage 4 breast cancer case, so we were hopeful that I was cured at that point and that getting pregnant would be fine.

Hormone Therapy & Targeted Therapy

I started hormone therapy and targeted therapy after radiation and did that for two years. Since I had radiation on that tiny spot on my rib, I had no evidence of disease (NED) on scans.

I was having a lot of side effects with hormone therapy and targeted therapy. Being NED for so long, I didn’t even know if these therapies were doing anything or just making me miserable. It was causing a lot of physical and mental side effects that were the hardest time in my life so far. Way harder than chemo, radiation, and the rest of it.

I wanted to stop early. My oncologist wanted me to get to three years, but I could only make it two.

Samantha L.
Samantha L.

Fertility Post-Treatment

I wanted to try having a baby so I asked him. He cited some recent studies about women who had breast cancer, stopped hormone therapy after two years, took a break, got pregnant, and then went back on treatment. The chances of their cancer reoccurring didn’t increase. Some people had their cancer come back and some people didn’t, but getting pregnant didn’t affect that.

However, the study was for stage 3 and below and not stage 4 breast cancer. Since I only had a tiny spot of cancer and it wasn’t in multiple places throughout my body, my case wasn’t as bad of a stage 4 breast cancer case, so we were hopeful that I was cured at that point and that getting pregnant would be fine.

I got off hormone therapy and targeted therapy. I started in November 2019 and ended in October 2021. I wasn’t having periods the whole time and then my cycles returned to normal. I felt amazing. I think it was because I wasn’t on hormones anymore. Then I got pregnant in April 2022.

You can’t let the fear of cancer coming back control your life. You can’t make every decision based on whether your cancer comes back or not.

Pregnancy was great. I still had all of the same pregnancy side effects, like nausea, but I was so used to being nauseous from treatment that it didn’t affect me. I just felt good that I wasn’t on medication. There were lingering side effects from both chemotherapy and targeted therapy. I still have hot and cold sensitivity in my fingers, toes, ears, and teeth. I have dry eyes.

It can be difficult because people don’t want their cancer to come back. They don’t want their child to be left without a mother. That’s the main worry people have. My philosophy on it is that you’re not a statistic. You don’t know what could happen in your life and you can’t let the fear of cancer coming back control your life. You can’t make every decision based on whether your cancer comes back or not.

If I can, then I will. If I feel good, then I’m going to do this or that. It’s not a decision that I made easily. My husband and I talked through it and we spoke to our doctor about it. We did what was best for him and what was best for our family specifically. It’s not for everybody. You have to figure it out for yourself.

Samantha L.
Samantha L.

There are all these medical questions that you need to ask your doctor, but it can be a good thing and possible. There’s a lot of new research coming out. You don’t have to be afraid of having hormones in your body after having hormone-positive cancer.

Moving to Alaska

In the middle of my pregnancy, we moved to Alaska, so we were away from my oncologist for a while. I was still keeping in touch with him, but we were hopeful that I was cured since I had scans that showed no evidence of disease for so long after my daughter was born. I was breastfeeding, so we didn’t do a lot of monitoring because I was still feeling good and there were no new symptoms.

Several lesions throughout my spine and pelvis were found on the MRI.

Cancer Recurs

We were on a mountain one day taking family photos when I collapsed to the ground. My back hurt so bad that I couldn’t get up. Five guys had to carry me to the car. I went to the ER that day and eventually had a scan. The results showed a fracture in my spine because there was cancer growing in it, crushing the vertebrae, and causing the pain. Several lesions throughout my spine and pelvis were found on the MRI as well.

I couldn’t get on a plane to fly back to Virginia because they were worried that if something shifted, I could be paralyzed, so I needed to have surgery to stabilize my spine before moving back. We couldn’t even think about treating the cancer until that happened. It was scary because we weren’t doing anything to address the cancer.

I had surgery in the middle of August followed by a very painful recovery. I was already in a lot of pain beforehand, but I needed two weeks of recovery. When we got to Virginia, I met with my oncologist and came up with a new plan.

Samantha L.
Samantha L.

New Treatment Plan

They thought I needed radiation on the vertebra that had the fracture because there were other spots throughout my spine and pelvis, but that was the biggest and causing the most problems. We did three rounds of radiation on that first.

My oncologist knew that hormone therapy and targeted therapy made me miserable, so he gave me three options. He said I could go on hormone-targeted therapy, I could take a chemo pill called Xeloda (capecitabine), or I could get on a clinical trial.

I couldn’t start the trial until 14 days after my last radiation, so for two weeks, I wasn’t doing anything and I could feel things getting worse.

Joining the Clinical Trial

He was excited about the clinical trial because it used a new radium drug targeting bone metastases. It was already an approved treatment for prostate cancer with lots of success and this trial was testing it on metastatic breast cancer patients. We went with that because he said it could eliminate what’s in my bones.

The problem was that I didn’t know which group I would be in. They were going to tell me, but I was either going to be in the group getting chemo or in the group getting chemo and the radium drug.

That was a stressful time because there was a period when I had to wait to get approved for the trial. I couldn’t start the trial until 14 days after my last radiation, so for two weeks, I wasn’t doing anything and I could feel things getting worse.

I ended up in the radium arm of the trial, which was good, and I did that for a while. It helped with my pain a lot and decreased some of the markers in my body.

Samantha L.
Samantha L.

I ended up having to go off the trial because my scan showed mixed results. Some areas were better, but some areas were worse. I think it’s because my original scan was in September and not right before I started the trial. There was that two-week period when things got worse, but there’s no way of knowing if that was it or not.

Hormone Therapy & Targeted Therapy

After the trial, I talked with my husband and my family and decided that I was going to give hormone therapy and targeted therapy another try. My oncologist recommended trying a different drug than what I was on before, so that’s what I’m doing now. I’m on anastrozole and abemaciclib, which is slightly different from the letrozole and ribociclib that I did in 2019.

The whole point of stage 4 treatment is to find a treatment that you can tolerate for the rest of your life.

Treatment Decision-Making

People don’t realize how much thought is put into treatment-decision making. You think about it for days, weeks, and months, talking it through and talking to doctors. I think that experience was good because it led me to my decision and made me realize that I’m exactly where I should be.

Having a Strong Support System

I have a supportive husband and family who help talk through things with me. I think about things a lot, pray all the time, and try to get the wisdom to make all these decisions in a way that’s going to be the best for myself, my husband, and my daughter.

It’s not just about patience. It takes a lot of work and it’s not something that you make a split-second decision about. There’s a lot of thinking and praying.

Samantha L.
Samantha L.

The whole point of stage 4 breast cancer treatment is to find a treatment that you can tolerate for the rest of your life. When we went to a new center, found out all the information, and talked with my oncologist more about whether this was realistically going to be the best option for me, that’s what made us think that this is what’s going to be good.

It wasn’t just me. My husband was so afraid of me being on it again. He knew how much I suffered when I was on it. It affects both of us. Going on it for the second time around was nice. It was working better. I don’t know if it’s because I went through a pregnancy, I’m older, it’s a different drug than before, or if I have a different mental attitude towards it.

If I didn’t have a baby who was so dependent on me, I don’t think I would’ve even considered going back on hormone therapy.

Everything happens for a reason. Some people thought it was a dumb decision for me to get pregnant, but having her is what made me do this treatment in the first place. If I didn’t have a baby who was so dependent on me, I don’t think I would’ve even considered going back on hormone therapy. I would’ve done the chemo pill. It could have worked, but it could not have worked. Having her around gave me this huge drive to live for as long as possible. It’s what made me even try it again in the first place. I wouldn’t have even known that it would be better this time around.

A cancer diagnosis is harder on the family than on the person going through it. Your family loves you. A lot of family members feel like they’re being pushed away and that they’re not wanted. My instinct is to do that because I don’t want to put a burden on them. But at the end of the day, it’s important that they’re there. The best thing that a family member can do is be there and listen. What to say and do is going to be different for everybody, but being there is a good place to start.

Samantha L.
Samantha L.

Words of Advice

Don’t wait. If you want to do something, do it. You never know when your life is going to dramatically change. I didn’t realize how much I enjoyed picking up my baby and rocking her to sleep then all of a sudden, it’s taken away from me.

When we moved to Alaska, people asked why we were going. We had an opportunity, so we’re going to move to Alaska for a year. We probably could never do that again because now I need all this treatment so I’m back in Virginia where my original team is.

If you want to do something, do it while you can because you never know when you’re physically not going to be able to do it.

Don’t wait. If you want to do something, do it. You never know when your life is going to dramatically change.

Samantha L.
Thank you for sharing your story, Samantha!

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