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.
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)
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.
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.
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.
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?”
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.
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.
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?”
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.
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.
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.
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.
Jake’s Testicular Cancer Story, IVF, and the Family He Was Told He’d Never Have
Jake’s stage 3 testicular cancer experience began when he was a 17-year-old high school football player. He initially thought his back pain and poor sleep were part of the season, so he brushed them off. Two weeks after the final game, he noticed a lump on his testicle, so he finally went to the doctor.
In a single Friday, he moved from a morning appointment and scans to hearing the words “testicular cancer” and orchiectomy that same afternoon, with chemotherapy scheduled to start the following Monday. Further scans showed that the disease had spread from his testicle to his lymph nodes and his lungs, leading to an advanced testicular cancer diagnosis and an intense chemotherapy plan.
Jake went through four rounds of chemo (five days a week for eight hours a day), followed by a 10-hour, non-nerve-sparing retroperitoneal lymph node surgery (RPLND) at a testicular cancer center in Indianapolis. The surgery removed a mass roughly the size of two fists, left him with a large abdominal scar, and led to a 70-pound weight loss during recovery. Even in those brutal months, he focused on what he had to do next, while acknowledging how emotionally devastating it was for his parents.
The long-term impact of his stage 3 testicular cancer experience was clearest in his fertility. At 18, Jake was told that there was a significant chance he would never have children naturally, and the lymph node surgery ultimately confirmed that.
For years, he and his wife, Brittany, carried a quiet understanding that kids likely were not in their future. A decade into marriage and in their mid-30s, they decided to explore options, meeting with a male fertility specialist and a female fertility team. Together, they created three high-grade embryos: two boys and a girl.
Today, Jake is a school superintendent and third-generation farmer raising two boys on the same land he grew up on, while honoring the daughter they lost after embryo transfer. He talks openly about hope, scanxiety, and why men need to speak about fertility and survivorship so others know they are not alone. His story underscores that “never say never” is more than a phrase; it’s a way of holding on to life, family, and faith even when the odds feel impossibly long.
Watch Jake’s video or read the edited transcript of his interview to find out more about his testicular cancer experience:
Early testicular cancer symptoms like back pain and a lump on the testicle can be easy to dismiss, making it vital to listen to your body and seek care quickly.
Jake’s stage 3 testicular cancer treatment permanently affected his fertility, yet he continued to focus on the next step in front of him.
IVF and ICSI opened a path to parenthood years after treatment, illustrating how modern fertility options can create possibilities even when doctors say natural conception is unlikely.
A universal truth in Jake’s story is that hope grows in community. Honest conversations, supportive partners, and sharing experiences help people feel less alone during and after cancer.
Jake’s transformation is visible in how he moved from a stunned 18-year-old patient to a school superintendent, farmer, and father who now uses his voice to encourage other men to talk about exams, fertility, and survivorship.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
My name is Jake, and I’m 42 years old. I grew up in a family of six on a dairy farm, which was our livelihood. I’ve worked in education for about 17 years while also working on the family farm. I’m a third-generation farmer.
Childhood dreams, college, and career path
When I was young, I didn’t know for sure what I wanted to do, but one thing was for certain: I wasn’t all that interested in the dairy business. The farming that we did was dairy farming, and I knew that I didn’t want to do that. I was very involved in activities and athletics. My mother was a special education teacher, so I was very involved in education.
When I went to college, I knew that I liked being hands-on, so I thought I would want to be a teacher and a coach. I enrolled in our industrial technology education program, so my teaching career started as a shop teacher.
Why coming back to the farm mattered
It was something that I was always coming back to, even though I went away for college. I came home all the time. I always came back on the weekends and helped in between college classes. I knew that I wanted to come back, live on the farm, and be a part of it.
Being able to be right where my grandparents were is important to us. My wife, Brittany, and I, and the boys have been able to add to the farm, so that’s meaningful to us as well.
Siblings and carrying the farm forward
I’m the only boy. I have three sisters, but none of them live on the farm. One lives about 15 miles away, and the others are a couple of hours away. There’s not a whole lot of interest from them in farming. They’ve always said, “Okay, that’s going to be your deal,” but it’s worked out okay.
Carrying the farm and family name
It was definitely important to carry on the farm and the family name. My dad was the only son of four children. He came along later; his three sisters are quite a bit older than he is. When he came along and was able to continue on the farm and the family legacy, it was a surprise and a blessing to my grandparents. I’ve heard my dad talk about that.
I’m an only boy as well. Being able to continue that legacy and having two boys myself, knowing that it hopefully continues, is pretty cool to think about. But to be honest with you, life is busy, and I probably don’t stop and reflect on that as much as I should.
Size and growth of the farm
We have about 800 acres. We’ve grown it from 160 acres to about 800. We run beef cattle. It’s a cow-calf operation. We’ve added to that throughout the years, and a lot since Brittany and I have been married. But we live on the original 160 acres, and we’re nearing a century with that piece of the farm.
Cancer symptoms, diagnosis, and initial treatment
First signs that something was wrong at 17
I was 17 years old and in my senior year in high school. Throughout the process, I turned 18. My birthday is in November, so this was through the fall.
It was football season and the first thing I noticed was not being able to sleep well at night and having back pain. Being 17, I didn’t think a whole lot of it, especially being in football season. I thought I was sore from that. I went through the season and played, but I still had pain in my legs and my back.
Two weeks after the season was over, I was still having problems. I noticed a lump on my testicle and continued to have back pains, which was what triggered me to go to the doctor.
The one-day path to testicular cancer diagnosis and surgery
I had a doctor’s appointment on a Friday morning, which I remember like it was yesterday. They did an exam and sent me directly over to the hospital that same day. I drank the MRI liquid that highlights your body, and they did a scan.
I went back to my primary care doctor probably mid-afternoon. At that point, they said, “We believe that you have testicular cancer.” They sent me over to a urologist that same day. They did a couple of tests and then said, “We think that you have testicular cancer, and we want to do surgery on you today.”
Later that same day, I had surgery. I had the orchiectomy (testicle removal surgery) and was scheduled to start chemotherapy the following Monday. All of that was in one day.
Hearing the words “testicular cancer” at 18
Being 18, it helped that I thought I was bulletproof. I can remember it being very tough on my parents, though. To this day, I believe the whole process was much harder on them than it was on me from a mental and emotional standpoint.
For me, it was a process-driven experience. What do I have to do? I have to do this, then this, then this, and ultimately, hopefully be okay. I didn’t let it all sink in. My parents thought the worst and expected the worst.
Before going into surgery, I can remember being there with them. They said, “Do you want to get another opinion or delay this and go do something else?” I said, “Let’s just do it,” so I had the surgery that day.
Going into surgery, they told me, “We know you’re just 18, but once we do this and you go through chemo, there’s a chance your sperm cells won’t redevelop and come back, even though you’ll still have one testicle. Do you want to go this weekend and bank some sperm?” I thought, “How in the world am I going to have this surgery and then go do what it takes to bank some sperm?” I opted not to do that at that time because everything was already lined up. I started chemo the following Monday.
Discovering stage 3 disease and the cause of back pain
It was not localized. Throughout the scans, they found that my lymph nodes were enlarged, that the cancer had spread from my testicle to my lymph nodes, and a little spot on my lungs. The spot on the lungs is how they classified it as stage 3 cancer.
The biggest problem was the mass on the lymph nodes, which was causing my back pains because it was pressing against the nerves in the back.
They told me I’d have three rounds of chemotherapy, possibly four, to shrink the mass. I ended up having four rounds. I was receiving treatment five days a week for eight hours a day. Then they gave me a treatment the following two Mondays and I’d have the rest of those weeks off.
Being told I might never have children
Brittany and I were friends/dating at the time this was going on. She remembers it better than I do, but she says we had a conversation where I said, “If it’s meant to happen, it’ll happen some way.”
The prognosis from chemo was basically 50/50 that my fertility would come back. What solidified that I wouldn’t be able to have kids naturally was the post-chemotherapy lymph node dissection. It was non-nerve-sparing; they had to take out part of those nerves that are part of the reproductive process. That’s when they said, “You’re not going to be able to have kids naturally.”
That surgery didn’t happen until about five months down the road. I went to Indianapolis and had the post-chemotherapy lymph node surgery.
Complete treatment timeline and the brutal lymph node surgery
It started with the orchiectomy, which is the removal of the testicle. Then I had four rounds of chemotherapy. That lasted from the end of November through about March of the following year, because each round was about a month.
They gave me a little time to recover from chemotherapy. The chemo made me pretty sick. I remember being sick, nauseous, and vomiting about every day through that process.
Upon completion of chemotherapy, they said, “Okay, we feel like this is good,” and sent me to Indianapolis to Indiana University Health. That’s the same center that treated Lance Armstrong, and they specialize in this surgery and treating testicular cancer. We went there for a consultation first and then scheduled the surgery.
The surgery took about 10 hours. We went back and read the surgery report. They literally have to open you up from the inside. I have about a 10-inch scar from the bottom of my chest going down. They open you, pull out your intestines, set them to the side, and carve out the lymph nodes from the back.
Recovering from that surgery was the hardest part of the whole process, including chemotherapy. I lost about 70 pounds during recovery. It definitely slowed me down.At that age, I did have 70 pounds to lose. I played football, so I was a heavier person. I weighed probably 235–240 pounds and got down to about 165 pounds by the end of the recovery from that surgery.
Finishing treatment and moving into survivorship
I did not have more chemo after that surgery. That surgery was the completion of my treatment. I found out then that they were unable to save the nerves that are part of the reproductive process. It was a non-nerve-sparing post-chemotherapy lymph node removal. They said they took out a mass about the size of two fists put together.
I recovered from that. In the meantime, I was trying to figure out what I was going to do with my life because I was just graduating from high school. I didn’t know what I was going to do until about two weeks before the start of the fall semester. I got a call from a coach at Missouri Southern State University in Joplin, Missouri. He had actually called the day I had my first surgery in November and said, “We’d like to recruit you. Would you like to come down?” I told him, “Here’s the deal. I just got this news.”
He stayed in touch with me. His name was Mark Smith. He’s a Razorback legend and was a coach there at Missouri Southern at that time. Coach Smith stayed in touch throughout my treatments and followed up with me late in the summer. He said, “Hey, come over here.”
I spent the whole first fall season on the video crew. I didn’t practice or participate because I hadn’t been cleared yet. I was part of the video crew and filmed for them. Then I worked out and started rebuilding some of my strength.
Follow-up, scanxiety, and long-term health
Being declared in remission and long-term follow-up
I think it’s 10 years before they say you’re essentially clear. I had to go back every month for the first year, every two months in the second year, every three months in the third year, every four months in the fourth or fifth year, then every six months, and then once a year up to 10 years.
After 10 years, they basically say you have a better chance of developing some other type of cancer than this one returning. That all worked out perfectly for me. No warning signs and no scares along the way. They truly treated it, removed what they needed to remove, and cured me.
Fear of recurrence and scanxiety
There was always a fear that it would come back. Every single time you go in, you think, “What are we going to find out now?” That developed more as I got a little older.
I hate that for anybody who’s been through cancer treatment. Every time you go in for a blood test, you wonder what it’s going to show. The anxiety that you have with that is something you really can’t explain, but it is definitely a real thing.
Staying on top of my health after cancer
I do go to the doctor regularly. I have my annual visit and make sure we get all the markers we need from a blood test standpoint. Anybody I talk to who is having these issues, I tell them, “Don’t delay. Just go do your exams.”
I believe young men should do testicular self-examinations, much like we encourage women to do their self-exams. Men need to be doing the same thing.
Life now: Superintendent, farmer, and daily routine
Balancing school leadership and farming
I work off the farm and I’m a school superintendent. I’ve been in school administration for about 13 years. I love the work. I love helping kids. I love the complexities of the school systems, but I also love the farm. I know those things have to be maintained together.
About every morning between 4:30 a.m. and 5 a.m., I wake up and take care of our chores. Many times, people ask, “How do you do everything? How do you do this?” Between getting kids around and everything else, I’ve learned the processes that have to take place to make sure the chores get done, the cattle get fed, and then we pick up the outlying pieces after work, on weekends, and on holidays.
Morning chores and farm management
Morning chores take about an hour and a half in the winter and about 30–45 minutes in the summer. It’s important to maintain your grass and pastures in ways that keep them as low-maintenance as possible. It’s also important to have a good network of people to help get it all done, like mechanics and fencing folks, to help you accomplish it all.
The hardest and most rewarding parts of cattle farming
The hardest parts are adapting to the market and the cost of inputs you’re using, whether it be feeds, fertilizer, or the market for the cattle you’re raising. Those things are not set in stone, and if you do the same thing over and over again, you’re probably not going to maximize your earning potential.
Knowing how much your inputs cost matters. If you usually take your calves to 850 pounds, sometimes it might not make financial sense to take them that far. It might be better to wean them and sell them. Recently, there have been times when it didn’t make sense even to do that, and you might want to sell them off the cow. Adapting to those ebbs and flows is challenging.
The most rewarding part is simply the work. For the past seven years, it’s been doing it with my family. For the past year, the best part has been Brittany’s involvement and our Faithful Farming marketing and social media aspects, where we’re documenting this and sharing the journey with anyone who wants to follow along. It’s the most fun we’ve had in farming, and I think it’s because all of us, including my dad, have a part in it. It’s been good.
Lasting physical effects of treatment on farm work
I haven’t experienced neuropathy. The biggest thing I’ve noticed through the years is scarring, probably from all the nausea and vomiting. I think I’ve got some long-term effects from that, but those are pretty treatable with proper medication. Outside of that, I consider myself very blessed.
Farm tasks that feel most purposeful
Feeding and caring for the livestock are what make me feel most connected to my purpose. I like doing those the most. That’s the daily grind. Everything else is a one-off project, but the daily feeding and caring for the livestock, and making sure everything is healthy and has the nutrition it needs, is the work I enjoy the most.
A typical workday and farm day
On a workday and a school day, I come in at about 6:30 a.m., turn on the lights, and start waking everybody up. Since having kids, the challenge has been how to slip out quietly so the boys can keep sleeping and get their rest. My oldest knew the second I got up and was with me all the time. Between about ages one and three, he would get up at 4:00 a.m. and go with me, but I knew that was unsustainable once he started school.
When I come back in, that’s when we start getting ready for school. The boys go to school with me. I’m in a small K–8 school here, and I’m very blessed to have them with me in the same building all day long.
On a non-workday or non-school day, it becomes a farm workday. I’ll have a number of projects lined out. The family helps me with that. They usually go and feed with me as well. We pick out some chores and wrap up the day as best we can. Those one-off projects are where I struggle to get ahead, because I feel like I never get as much done on those projects as I want to. But that’s probably life in general.
Working cattle, vaccinations, and weaning
Every now and then, we have to bring the livestock in for vaccinations or treatments. We work the cattle about once a quarter for various health reasons: annual or semiannual vaccinations, deworming, or addressing herd health issues. Weaning is when we take the calves off the mothers, and we have a specific protocol we go through for that.
Evening chores and spending family time outside
When we get home from school, we still have chores to do. In the morning, most of those chores are done in the dark. In the evening, we get an hour to an hour and a half of daylight in the winter and a few hours in the summer. We work on either projects or general maintenance and catching up.
The boys’ favorite parts of farm life
The boys love being around the cattle and working the cattle. They’re always up for an adventure. My oldest likes driving any piece of equipment that exists, and he’s pretty good at it. He loves operating a tractor, the skid steer, or the side-by-side.
As a family, we love to go on an evening cattle check. Those are pretty special to us because all four of us are together, checking the cattle, and making sure everything is good. There’s always something that comes up, though.
Fatherhood, IVF, and the journey to our boys
Discovering fertility options years after cancer
Being a father has been the greatest experience of my life. Brittany and I were married for 10 years before having kids. We were close, and from the beginning, she had been on the journey with me. We knew we weren’t going to be able to have kids naturally.
We were on vacation in 2017 when we said, “We’re not getting any younger.” Time was ticking away. We were both 35, and we said, “If we’re going to have kids or try to have kids, we might want to explore what options are out there.” We didn’t know if there would be any options, but we didn’t want to be 10 years down the road and not have at least explored and tried.
I started with a local urologist and asked what they thought. They referred me to a specialist in Frisco, Texas. Brittany and I went to a male fertility specialist, Dr. Bush, in Frisco.
Here’s a little different part of our journey. We share our in vitro fertilization (IVF) story with couples regarding infertility. We knew where the issue was; it was with me. I think that simplifies the IVF journey for people. Often, couples don’t know where the issue lies, so that allowed us to hone in on what direction to head first.
The needle test and the first miracle: Viable sperm
When we went to see Dr. Bush, he said, “I’m going to take this needle and stick it into your testicle to see if you’ve got any viable sperm.” I said, “Okay.” He numbed me up a little, stuck the needle in my testicle, pulled the sample out, and squirted it into a dish.
He said, “Now I want you to go across the road to a female fertility specialist.” We set up an appointment for Brittany, and they laid out the process of harvesting her eggs and what would come next. We got all the drugs for Brittany to get her set up. That whole process is hardest on her because of the hormone injections and everything that goes into it. It’s a tough process for any woman who has to go through it.
Egg harvest, ICSI, and that unforgettable “pocket” day
We scheduled a date: I’d go back to Dr. Bush, and Brittany would go back to the female fertility specialist on the same day. Brittany would have her eggs harvested, and I’d provide the sperm sample.
Brittany went through the process and had her eggs harvested. I think they got about 30 good eggs. They allowed her time to recuperate. We did intracytoplasmic sperm injection (ICSI), where they put my sperm and her eggs together on the same day.
That day was very interesting. Brittany dropped me off at the male fertility specialist and went on to her appointment, where they were going to harvest her eggs. I went to Dr. Bush. He did just what he had done before: he pulled a sample with a needle out of my testicle, squirted it into a little tube that looked like an old film canister, and put a lid on it.
Prior to that, he said, “Make sure you wear a shirt with a pocket on it.” I said, “Okay, I’ll wear a shirt with a pocket.” He put an ice pack on me, took that tube, stuffed it in my pocket, tapped me on the chest, and said, “Go over there and give that to them,” pointing across the road.
I walked into the embryologist’s office and gave it to them. I said, “Make sure you put my name on that.” At the same time, they harvested Brittany’s eggs.
We knew we didn’t want any more embryos than what we planned to use. We limited the fertilization to 10 eggs. That’s a tough process for anyone. Whether you get zero embryos or 15, the cost is the same. If we had 30 good eggs but only fertilized 10, they could have fertilized all 30, but we did not want any unused embryos with life that we weren’t willing to implant and carry out. We knew beforehand we’d only fertilize 10 eggs.
They fertilized 10 eggs and froze the rest of her eggs. On the way home, we got a call: seven were showing life. That was the same day. On the way home, we said, “We’re going to have to buy a conversion van or a big bus,” joking about the number of kids.
Three days later, we got another call and found out we had lost two; we were down to five. On the fifth day, we lost two more, so we were down to three. On day five, you either implant the embryos or freeze them. We chose to freeze all three embryos.
That same day, we did genetic, gender, and chromosome testing. We found out that all three embryos were either AA grade or AB grade, so they were all of very high grade. We had two boys and one girl. I remember Brittany coming to see me at work. She pulled out baby outfits: a boy outfit, a girl outfit, and another boy outfit. It was a great moment.
Implanting J. Henry, Jack, and Anna Kate
About 30–45 days later, we let Brittany’s body recover and get set up for implantation. We named all three of them from the beginning: J. Henry, Jack, and Anna Kate. They put in the first embryo, our first boy, J. Henry, and everything went great. He was the joy of our life for two years when it was just him, Mom, and Dad.
Then we started the next process. We decided we wanted to go boy-boy-girl in birth order, so Jack was put in next. He was a pill to Brittany during the pregnancy. He pinched off her urethra at one point. He’s been a pill since the day he went in, but everything went well. He was great and healthy.
About two and a half years later, we put in Anna Kate. She made it for about two weeks, and then we lost her. I hadn’t been emotional about that since the whole thing, but we feel very blessed to have the two boys. They are a lot of our lives.
Deciding to be done and not using donor sperm
We decided we were good and that we were blessed to have the boys we have. We never considered using donor sperm. We considered adopting an embryo. We learned how many “snowflake babies” are out there, which are embryos that have been given the blessing of life but are just frozen. We considered that if it didn’t work out with our own embryos.
We only did one round of IVF to get those 30 eggs. Even in preparing for implanting the embryos, Brittany had to go through another process, which was tricking the body to act like it was pregnant. Anytime you’re injecting hormones into any of us, it’s tough. It’s good in one sense because of the outcome, but it’s still hard. The more natural things can be, the better. That’s the way God intended it. But this is what we needed to do.
What Brittany endured through IVF
I don’t think I talked about her enough. None of this would be possible — children or even marriage in the way we know it — without Brittany. What a woman has to go through for IVF, carrying a child, and the anxiety and unbearable weight of going through that same process two more times is nothing I’ve ever been through and nothing most men ever go through.
We were blessed beyond belief, but while the blessings were enormous, the weight that Brittany had to carry, knowing that each round was another round of shots and everything that came with being pregnant, carrying the baby, and everything leading up to it, was huge. In my opinion, what I went through was a drop in the bucket compared to what Brittany had to go through to bring our children to life.
Raising boys on the same farm and the meaning of fatherhood
Who the boys are today
Our two little boys fight like crazy. One moment, you can be furious with them; the next moment, you love them to death and wonder how anybody can be so sweet yet so ornery in the same body. We love them. They are everything to us.
Watching them grow up where I did
Every day, I count the blessings that they’re out there digging in the same dirt that I dug in and playing in the same barns that I played in. Not only that, they’re the same barns my dad played in. We see that as very special.
It’s also very special to have Papaw just down the road. I know they love that. They adore their Papaw. When he wants to get out and cruise around on the side-by-side, or when they want to run down and see him, that’s pretty special. Knowing that we have this place, and knowing how close it was to not happening, makes me feel blessed every day.
Little moments on the farm I never want to forget
Right now, I feel like every day is something I never want to forget. We’re at a good age. They’re both capable. They still want to be around Mom and Dad. They act as if they like us. They’re definitely growing into themselves right now. It’s fun seeing their relationship develop.
For several years, little brother wasn’t as capable as big brother. Seeing big brother recognize that little brother is pretty relevant to his life now and seeing their relationship grow has been very awesome the past couple of years.
What I hope my sons say about me one day
When my boys are grown, I hope they can look back and see the Christian influence I tried to be for them. I hope they recognize what it means to be a good person, what it means to be a Christian, and what it means to be a father, and that they can reflect on their experiences with their dad for that.
What I hope the farm represents for future generations
I would love nothing more than for them to find a way to live here and make it work. Ultimately, I want the farm to be able to support them in whatever direction they want to go. That’s every farmer’s dream, for their kids to come back and carry it on. Why else would we be doing it?
But if they want nothing to do with it, I’m not saying it wouldn’t bother me, but I want it to help them do whatever they want to do.
Reflections on cancer, work, and hope
How the diagnosis-day version of myself would see my life now
The version of me from diagnosis day probably wouldn’t believe where I am today, especially when it comes to the kids. It was a hard “no” from the time of the surgery until Brittany and I were sitting in Ocean Springs, Mississippi, saying, “Do you think we ought to try this?” It was a hard no until that conversation, when the idea was planted that there might be hope. I don’t think that earlier version would believe where we’re at now.
Surviving, fear of other cancers, and family history
I don’t think I face the fear of this cancer returning. I think the fear of a different kind of cancer might be a little stronger than for the average person. I believe what the doctors told me was that there’s a greater chance of getting a different type of cancer than this one returning at this point in my life.
My dad went through prostate cancer treatment. It definitely took a toll on him, but he was able to move through that pretty well. That’s something of concern. You hear horror stories, particularly in men, about colon cancer and pancreatic cancer, and those things are always at the back of my mind.
How cancer changed my sense of a hard day’s work
Cancer definitely made me grow up quicker. At that time, I remember having a different perspective than some of my peers and friends. On the negative side, sometimes I feel like it has made me a little less compassionate about some of the small things we complain about.
I try to be conscious of not getting hung up on small things and of talking with and counseling people to not get hung up on the small things. Things could be worse. However, we each have our own battles.
Messages to other men about fertility, survivorship, and hope
To men who have been told they may never have children
Never say never. At that time, I didn’t even know what options could have been available. The technology is pretty incredible. Life is very incredible. God has a ton of blessings. Never say never about anything. We don’t know.
Why men need to talk about fertility and survivorship
Men need to talk about fertility and survivorship so that others with the same struggles know they’re not alone and can maintain hope. Hope is such an important word when it comes to cancer and when it comes to men being able to have children. Without hope, things can get overwhelming and feel defeating. Conversations, dialogue, and hearing each other’s stories create hope.
What my story says about hope
My story says that hope is there and to never give up. Don’t take no for an answer. Keep the hope alive.
Unconditional Love: Tom’s Caregiver Story of Loss and Resilience
Tom describes his caregiving experience as an act of unconditional true love, a commitment that saw him through two of the most difficult chapters of his life. For six years, Tom served as the primary caregiver for his mother during her experience with stage 4 uterine cancer. He went to all of her treatments, which meant navigating the long drives to Memorial Sloan Kettering Cancer Center and learning to find clarity through compassion amidst a grueling schedule of chemotherapy, radiation, and surgeries.
Interviewed by: Ali Wolf Edited by: Katrina Villareal
Years after mourning his mom’s death, Tom’s experience shifted when his younger sister, Kath, was diagnosed with stage 4 bile duct cancer (cholangiocarcinoma). Having already endured the anticipatory grief of one terminal diagnosis, Tom found himself putting on a familiar armor of robotic efficiency and outward positivity to protect his family. Becoming a caregiver to his sister meant reliving a nightmare in the same hospital hallways. Still, Tom says he would have given every organ in his body to change the outcome for those he loved.
Despite his profound exhaustion six months after his sister’s passing, Tom remains a grounded advocate for the importance of being present. He acknowledges the emotional complexity of caregiving, from the pins and needles of chronic anxiety to the quiet, transparent conversations on the way to chemotherapy appointments. His story serves as a reminder of the power of showing up as a radical expression of dignity and care.
Watch Tom’s video or read the interview transcript below to know more about his story:
The reality of anticipatory grief: Caregiving for a terminal loved one often involves a state of chronic anxiety and grieving the loss before it occurs.
The armor of the caregiver: Many caregivers adopt a robotic or stoic persona to shield their loved ones from their own pain and fear.
Advocating in the hallways: Tom highlights the importance of seeking unedited truths from medical teams, often by catching doctors outside the patient’s room for direct updates.
The burden of familiarity: Returning to the same medical institutions for a second family diagnosis can trigger intense trauma and PTSD-like symptoms.
A universal truth: Life is about the quality and depth of the love shared between people.
Name: Tom M. (caregiver)
Loved One 1: Mother (Deceased 2011)
Diagnosis: Uterine Cancer
Staging: Stage 4
Symptom: Stomach pain
Treatments: Surgery (grapefruit-sized tumor removal), chemotherapy, radiation therapy, laser therapy
Loved One 2: Kath (Sister, Deceased August 14, 2025)
Diagnosis: Bile Duct Cancer (Cholangiocarcinoma)
Staging: Stage 4
Symptoms: Initially suspected UTI, intense pain
Treatments: Chemotherapy, palliative care/hospice
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
My name is Tom, and I was a son to a mother with stage 4 uterine cancer and a big brother to a younger sister who had stage 4 bile duct cancer.
Unconditional true love
The definition of love comes in a million different ways. Loving someone can be very hard, especially when you see someone suffering to the point where they’re suffering literally to death.
In my mom’s case, it was six years of her suffering before she died. They’d only given my mother a few months to live, and she ended up going six years. It was hard to watch, and it was hard to show up for it all.
When you have someone close to you who’s suffering and dying, you get a pretty good glimpse of what unconditional love is. You keep running at seeing something so horrific happening to someone you love so much.
It hurts. My love for my mom and my sister, my family, and all mankind, for the most part, is unconditional. It hurt badly to keep showing up, going to the appointments, chemotherapy, radiation, and surgeries, and everything for so many years. It was exhausting, and I didn’t shy away from it.
Putting on my robotic armor
I almost became robotic. It was exhausting.
Anytime I was around my mom, my sister, my father, or my sister’s children, I put on a whole bunch of armor. I marched in there like, “We’re going to do this.”
When my mom got sick, I unfortunately knew what to do because I had done it with my mom. It goes back to unconditional love. I had no choice. Wherever they were and whatever I had to do, I was going to do it. I would have given every organ in my body for either of them. I just kept going. I did my best. A lot of it was out of my hands.
Experiencing post-grief exhaustion
I’m exhausted now, sitting here from it. It left me pretty tired.
It’s been several years since my mom and six months since my sister. I’m tired. I’m very tired from it. I’m still moving slowly, but I’m getting there.
My mother’s life before cancer
My mom and I thank God all the time. After she passed, my sister and I would talk all the time about how she had us very young. She was a teenage mom.
I’m lucky that I almost grew up with my mom. She was my mother above and beyond everything else, but she was my friend as well. We were very close her entire life. I was very much a mama’s boy, and she was a great person. She was the most loving human I’ve ever met in my life by far.
My mom had the most beautiful soul. She just had love. Even in the face of death and everything, she faced it with grace and bravery. She had a tough life towards the end.
My mother’s family losses
She lost her brother when he was 48. He died of a heart attack a few years prior to her getting diagnosed with cancer. That hurt her badly. I saw incredible pain. Now losing my sister, I know what I was seeing.
My poor mom was diagnosed with this terminal illness and given months to live. In the same timeframe, she lost her father to cancer. Then she lost my cousin, the daughter of her brother who died, to suicide.
My mom endured pain before she even had cancer. She was so tough and resilient, but the love that she had for other people never subsided. There was never any bitterness or anything, even towards the disease.
She grew up in Maine as a kid, so she was fond of the outdoors. She loved kayaking and swimming. We used to go to the beach as kids, and she would swim from one jetty to the next. She was very athletic and a cool, down-to-earth person.
Gratitude for time with mom
After our mom passed away, my sister and I would talk about how lucky we were to have her. She died at 58, which is extremely young. We were in our 30s, so we were blessed to have her in our lives that long.
The tragic part of it, based on conversations I had with my sister, which still haunts me, is that we almost felt like Teflon after my mom died. We had given enough. You took our mom, this angel human. My sister and I are almost like Teflon now. What are the chances of anything like this ever happening to us?
We would talk about us being lucky because if we were to die, our kids are so much younger. That’s why when my sister got sick, it was unbelievable. I wouldn’t trade my mom or any of it for anything. I’m lucky and blessed. She was a wonderful human being.
Hospital awe and chronic anxiety
Everyone at the cancer hospital and everyone that she encountered was in awe of my mom. They were all like, “Wow. This lady is a whole other level of a human.” She fought. It was incredible, but it wasn’t pretty. It was six years of chemotherapy and radiation, and then more chemo, radiation, and surgeries. It put our family in a chronic state of anxiety.
I still have pins and needles now. I had this radiating feeling of anxiety for six years when my mom was sick, thinking she was going to die the next day. She was only given a short amount of time to live. The fact that she lived a year was wow. Then she lived another two years, then three years, and then four years. You’re waiting for the shoe to drop, and she kept swinging and fighting.
Hospice box rejection
They brought her the hospice box with the morphine and all that. My mother refused it one time and gave me the box to give to the people.
When they want you to go on hospice care, you know it’s bad. She ended up living another three months. It was incredible, but it was grueling and painful for her, obviously. For us watching it and not knowing when she was going to die, that was hard.
I found out later on that I was experiencing anticipatory grief. It’s a terrible feeling.
Taking on the primary caregiver role
I spent most of my time with my mom. My father was working full-time, my sister was a school teacher, and I had more of a flexible job, so I was able to take my mom to all of her appointments. It seemed like every Tuesday, we would drive from New Jersey to New York City for treatment. It was like that for years.
I was grateful that I was able to spend time with her in the car. I think back at New York City traffic. I’d be in the car with my mother for hours, going back and forth to treatments. The conversations we had were on a whole other level. My mom was very transparent and very manipulative, but in a good way. I know that she was preparing me during those car rides.
I’m lucky that I got the opportunity to see my mom on her way out and listen to all of her stories. She was a straight person. She would tell you how it is. She told me what she expected out of me. She even told me how I would feel after she was gone, what she expected, and what type of man she wanted me to be. For that, I’m extremely lucky.
Having mixed feelings about prolonged suffering
I’m so blessed that my mom and I had six years past what they had told her, as awful as that. Sometimes I don’t know if it was good for her to suffer like that. It’s what she wanted. She had two new grandbabies. My mother said she wasn’t going anywhere.
When she died, my sister was six months pregnant. My mother tried so hard, which is why she gave back the hospice box. She was trying to make it for my sister, knowing that my sister was pregnant and everything was going to hurt her, and she told me that. Everything with my mom, I know because she told me. For that, I’m lucky, but the cancer at that point was just too much. She died at 58 years old on December 21, 2011. We had her funeral on Christmas Eve. It was awful. It was a bad Christmas for sure.
Taking on the role of the family rock
I was in that mode for six years for my mom, my sister, and my father. They looked at me as the rock of our family. A lot of it involved shielding them. I shielded my sister from a lot of it. I didn’t even share my pain with my sister. She’s my younger sister, so I was very protective of her. I didn’t want her to feel the same pain that I felt.
I never wanted her to go to the hospital. I never wanted her to go to chemo. I shielded them from all of it, trying to protect them from what I was seeing at the hospital and what they were doing to my mom. I continued doing it, knowing that they were protected from it. That kept me going and kept me strong.
Hospital waiting room horror
We were in Memorial Sloan Kettering in New York. It was horrible. It was awful seeing everyone. What would hurt a lot was when I would see the children. Seeing little babies and toddlers going through this was brutal.
With my mom, it became a routine. I ended up knowing the people in the kitchen and security. We were there every week for years. In those six years, my mom went through either chemotherapy or radiation.
I would sit in the same place with my laptop because I had to work. I would sit next to my mom for chemo a lot of the time. When she would get surgery, I would sit in the cafeteria to work. The hospital became a place I was very familiar with.
Reliving trauma at the same hospital
The horror was when I had to go back to the same hospital for my sister. I spent so much time there that you could probably blindfold me and I’d still be able to walk through and show you where everything is.
I cried in the same bathroom about my sister, where I did about my mother; the same bathroom to hide from them so they wouldn’t see me.
My mother’s initial symptoms
She had stomach pain. When she went to a doctor, they were able to see the mass, but they discounted it.
My mother was very athletic and very in tune with her body. She didn’t feel right, so she got a second opinion. Then all the sirens started going off. We ended up at Memorial Sloan Kettering, and the next thing we knew, she was in emergency surgery to have this massive grapefruit-sized tumor removed from her body. It was terminal cancer.
I remember where I was sitting when the doctor came out and told us what was going on. It was a nightmare. That was the beginning. It didn’t stop until she died. It was exhausting.
My sister’s initial symptoms
They thought it was a UTI at first. She was in and out. They were doing all kinds of different tests to rule out everything but cancer. They didn’t anticipate anything crazy. My sister was 48 years old.
Then it became so painful that she ended up in the hospital. When I went to the hospital, I thought, “Why is she in the hospital?” I saw the nurses with the oncology shirts. “Why is my sister on the oncology floor?”
I’ve seen the faces before and I could tell that it wasn’t good. They had a pretty good indication of cancer, but they wouldn’t tell me at that point. I had a bad feeling. I tried to shake it off. I tried to will myself to not believe that my sister would have cancer at any level, let alone terminal.
It was one of the most aggressive cancers known, and that turned out badly.
Putting on armor for my sister’s diagnosis
I was immediately prepared. I knew even my fake facial expressions. I had the fake smile and fake positivity. It was all smoke and mirrors because I knew from seeing my mom how this ends.
Seeing my little sister beaten up like that was like ripping open a scar that hasn’t healed fully and probably never will be. It was brutal. It was a nightmare relived.
My sister also received care at Memorial Sloan Kettering, the same cancer hospital my mother was in. I recognized that the security guard at the front desk was the same one. Same elevators. Same floor tiles. Same walls. It killed me.
My sister’s guilt over trauma
My sister felt terrible for me. She knew I was with my mom all those years at that same place. My sister didn’t go there, so she wasn’t familiar with it. My sister apologized pretty much until she died, knowing that I was going to relive a nightmare wheeling her around like I did my mom.
Experiencing PTSD from returning to the same hospital
Those images haunt you. Returning to a place that caused intense trauma is a form of post-traumatic stress. I had to do it twice and hold it together again, watching my sister go through treatment.
Being a full-time caregiver for my sister
After my mother died, my sister built a house right across the street from our father to make sure he’s okay. My father didn’t remarry. My mother and father were teenagers when they met, married for nearly 40 years.
When my sister got sick, I immediately moved in with my father across the street. I was with my sister every day from when she was diagnosed until she died. I took her to all of her appointments with her husband. I wheeled her around to chemotherapy. I was with her at every doctor’s appointment.
I was an actor. I knew how bad stage 4 bile duct cancer at the level that she had was. I knew she didn’t have long.
Anticipatory grief came in like a monster, but I think I pulled it off. I never cried in front of my sister until I said goodbye to her. She probably could hear me because hearing was the last to go when she was on hospice.
I was very vocal and very aggressive. I was begging them to take part of my liver. I would have died for my sister.
Velcro brother presence
I was with her every single day, whether she was in the hospital or at home. I was either in her house or across the street in my father’s house. I would go over and be with her, her husband, and the kids to try to love her up.
She called me a Velcro brother. She made fun of me, but I was always like that with her. She was my sister. She wasn’t my equal in a way that she was mine, but I felt she was my responsibility since I was a kid. There was no bullying or anybody messing with my sister.
Not being able to do anything for her is what haunts me now. I wish I could have done something, but I couldn’t. I’m lucky I had her.
Ongoing family responsibility
My sister has three children: a 15-year-old daughter and 13-year-old twins. It’s my responsibility now, too, to be there for them and my brother-in-law. I do whatever I can to make their life better, however I possibly can. That’s what I’m going to do.
The rawness of a recent loss
My sister died on August 14th, which is my daughter’s birthday. This weekend will be six months. It’s still all raw.
It’s better for the audience to see someone fresh out of it. This is about as vulnerable as I could be. Though it’s hard to talk about it, I want to honor my sister and my mother. I want anyone else who’s in the position of being a caregiver or in the aftermath to know that they’re not alone. I wish I could take an ounce of weight off. That’s why I’m here.
The life lessons I learned
Be nice and loving. Life is about who you love. It’s pretty basic.
As far as the people going through the end of things, I’m no expert, but I probably understand a little bit of how they feel. I want them to know that I care deeply about them, especially the ones suffering from cancer.
If I could wave a magic wand, I would eradicate cancer right now for the benefit of everyone. It’s a nasty disease.
I hope our leaders have the same sense of urgency with cancer that they did with COVID. Cancer destroys not only the person but leaves all this damage behind.”
My final message as a cancer caregiver
My sister said that she would never allow me to trade with her because she knew how painful it is to be left behind. I hope that whoever reads this knows that I care about them, love them, and wish them well in their journey.
“Emily's the reason why I’m alive today. The treatments have kept the cancer at bay, but she's the one who’s kept me living, breathing, and enjoying life.”
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Barbara Kivowitz, Caregiver Expert & Author
“A critical ingredient we need throughout our lives in all circumstances is hope. Hope can exist and persist even when a cure is not possible. You can attach hope to anything.”...
Program Manager: primary contact for area oncologists and patients needing a phase I trial. Experience: ~20 years Hospital size: Large teaching institution
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From Fitness-Focused to Stage 4 Melanoma: Jenn’s Cancer Story
Jenn’s stage 4 melanoma experience began with what looked like a healthy, active life in Ohio. A self-described avid worker-outer, she spent the COVID years building strength, working out daily, and prioritizing wellness alongside her close-knit family and friends. When cancer entered the picture, it clashed jarringly with the identity she’d built as someone who rarely got sick and took her health seriously.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Jenn was completely asymptomatic when she noticed a tiny lump in her groin in early 2023. At first, it seemed like a pulled muscle or ingrown hair. Multiple visits to primary care led to reassurance that it might be a benign lipoma. As the lump grew, changed color, and spread to additional baby lymph nodes, Jenn and her husband pushed for more answers.
An ultrasound raised concerns, and a combined surgery for a scheduled, non-related hysterectomy and lymph node removal finally revealed the truth: metastatic malignant melanoma. Soon after, a PET scan showed that it had spread to her lungs, and an MRI confirmed lesions in her brain.
That’s when Jenn’s experience with advanced melanoma treatment began in earnest. At the Cleveland Clinic, Jenn met a melanoma specialist who recommended immunotherapy. Jenn advocated for the more aggressive combination of Opdivo (nivolumab) and Yervoy (ipilimumab), along with Gamma Knife radiosurgery for seven brain lesions.
The combination therapy triggered life-altering side effects, which included fever, severe rash, colitis, profound fatigue, and weight loss from 126 to 90 pounds. Still, she kept telling herself, “I may have cancer, but cancer doesn’t have me,” and pushed through three intensive combination doses before switching to maintenance Opdivo alone for two years.
Finishing 24 Opdivo treatments without abnormal blood work marked a turning point. Jenn slowly rebuilt her strength, returning to Pilates and working out four to five times a week. Today, she has regular PET scans and MRIs, lives with deep gratitude for everyday moments, and emphasizes sun safety and self-advocacy. She urges others to wear sunscreen, avoid tanning beds, and insist on biopsies of concerning skin changes. For Jenn, the experience has crystallized her purpose of being a mentor who reminds others, “You’ve got this,” and that choosing hope is always worth it.
Watch Jenn’s video or read the edited interview transcript below to know more about her stage 4 melanoma story.
Listening to your body matters: A small, painless groin lump in an otherwise healthy person turned out to be stage 4 melanoma involving lymph nodes, lungs, and brain.
Being your own advocate is essential: When initial providers dismissed her concerns, Jenn and her husband persisted, sought additional opinions, and pushed for imaging and specialist care.
Immunotherapy can be both powerful and punishing: The Opdivo (nivolumab) and Yervoy (ipilimumab) combination caused intense side effects and hospitalizations, but it also contributed to Jenn’s positive results.
A universal truth: Medical scans and test results matter, but so does mindset. Jenn’s focus on “cancer doesn’t have me” helped her navigate fear, side effects, and uncertainty.
Transformation: Jenn went from a stunned, newly diagnosed 49-year-old reading “metastatic malignant melanoma” on her phone to a resilient mentor who works out again, celebrates every scan, and supports others through their own experiences.
Prevention and awareness save lives: Jenn now champions sun safety, strongly discourages tanning beds, and urges everyone to push for biopsies of any skin spot that doesn’t look or feel right.
Name:
Jenn F.
Age at Diagnosis:
49
Diagnosis:
Melanoma
Staging:
4
Symptoms:
Initially asymptomatic, then a lump in the groin enlarged and changed color
Treatments:
Surgery: lymphadenectomy (lymph node removal)
Radiation therapy: Gamma Knife radiosurgery
Immunotherapy: Opdivo (nivolumab) and Yervoy (ipilimumab)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
My name is Jenn. I’m from Ohio. I’m 51 years old and I was diagnosed with stage 4 melanoma in December 2023.
Before cancer: My life and fitness journey
I was a happy-go-lucky person. I was very sociable with good close friends and family. We were always having get-togethers with family and friends. A very close-knit friend group is very important to me as well as to my husband. Before cancer, I was a very avid gym person; an avid work-outer, I would say. I worked out all the time.
During COVID, I worked out every single day. I did, too, before that, but not as hard. I wanted to get my health in check, even though I was very healthy. It was important to me that since I had the time, the structure, and a super fit husband, I knew that this was my chance to become healthy and in the best shape of my life. I became super healthy and felt great
Working out was my life for a while. It gives me clarity and I see results in the end. It’s a challenge for me to do heavy workouts and some things I’ve never done before. It’s always a challenge, but when that workout is over, I feel so good when I’m done. At the end of the day, I’m like, “Oh my gosh. I conquered a goal that I set out for myself.” You feel healthy and strong. For me, that was super important. I felt that during this journey. I felt strong, healthy, and rewarded. It’s very rewarding.
The shock of my melanoma diagnosis
It’s so crazy to hear stories of someone who was training, in the best shape of their life, and had their health intact, get slapped with a stage 4 cancer diagnosis. It is very bizarre. I can’t even explain it.
When I was diagnosed, I was taken aback because I didn’t understand how such a healthy, fit individual could be diagnosed with such a scary cancer that not many people are educated on. Cancer was never a thought.
When my husband and I would hear of people getting diagnosed, we would talk about it and I would say, “If I were ever diagnosed with cancer, I don’t know how I would be able to handle that news.”
I thought that the healthier I was, the less chance of becoming sick or even coming down with a diagnosis of cancer. I was extremely dumbfounded and didn’t understand how this could happen to somebody as healthy and in as good of shape as I was in. It was a surprise to me.
I didn’t understand it. I have stage 4 melanoma. I’ve got skin, but I didn’t understand how I could have it. I knew skin cancer and melanoma are very different, and a lot of people don’t know that. I was one of them. I had no idea. I never educated myself on that. It was a surprise to me to find that out.
How my stage 4 melanoma was discovered
I was 100% asymptomatic. I never had headaches or trouble breathing, even though my cancer spread to my brain and lungs. I never had any issues. I was a person who was never sick. I never felt anything.
At the beginning of 2023, I noticed a lump in my groin. It was a very small lump, smaller than a dime. When I felt it, I thought it might be a pulled muscle or an ingrown hair from shaving my legs. I brushed it off and decided I’ll wait a little bit.
As time went on, I would say two to three months, the lump was getting bigger. By that time, it was as big as a nickel. I said to my husband, “This is weird. Should I have this checked?” He said, “I think it would be a good idea to get it checked.”
I started with my primary care doctor, who was a friend of ours. I said, “Let me call him and get an appointment. I want him to check this out.” I had to wait a month, which was very understandable. I didn’t take that relationship with him to mean that I had to be more important than others. When I got in, he checked it and said, “It may be a lipoma. I don’t see anything significant with it. It doesn’t hurt you. It doesn’t look like it’s an infection,” because it was just a lump. There was no redness. My blood work was great. So I moved on and never thought anything of it.
Two months go by. By now, we’re probably six months from the beginning of me feeling this. It started to change color a little bit, and now it’s the size of a quarter. This was when I started feeling a little bit nervous. Unfortunately, the same thing happened. I went to my primary care doctor and it was brushed off. Looking back, it was disappointing, but I don’t look back anymore. At that point in time, it was very disappointing because this was a friend.
Luckily, my husband is in the medical field, so he reached out to some of his colleagues and said, “Hey, I want you to look at this bump that Jenn has in her groin, and now she’s developed one in the inner thigh.” It’s not a hard lump. It gets big and then gets small, and it was very warm. At this point, I was thinking, “Do I have an infection in my leg, and we just don’t have a clue as to what this is? We need to act on this.”
My husband’s friend, who’s a surgeon, felt it and said, “You need to get to a dermatologist because this is skin-related. I’m a spine surgeon. This has nothing to do with the spine, but I know that something is wrong.” I was a person who regularly had skin checks. When I got to my dermatologist, I explained what the issue was, and they got me in right away.
The first thing they wanted to do was an ultrasound. They wanted to see because they felt it was so deep in my skin. They didn’t think it was something they could address as a simple in-office surgery, because there are surgeries like Mohs surgery, where they remove it and see how deep it is in your skin. By the feel of it, they said, “I don’t think we should do anything like that. We need to act upon this.” They did the ultrasound. They didn’t even do a biopsy, which was fine. I was okay with that.
When they got the ultrasound results back, the sizes and color were very concerning to them. They then decided, “You need to get these removed. Then a biopsy can take place.”
The general surgeon who looked at them said there looked to be more than those two. They traveled up my leg — from my inner thigh, right above my knee, to my groin. He said that he called them “baby lymph nodes.” Again, cancer was never even mentioned at this point. That wasn’t even a thought.
The moment everything changed
It was now December. I had a non-related hysterectomy scheduled. The surgeon I was going to works at the same surgical center where my gynecologist was. I asked, “Instead of having two surgeries, can I just have one?” I was able to have one surgery. He said, “I’ll get with your gynecologist. I’m going to come into the room. I’ll have him do his part first. Then we’re going to go in.”
When the day came, he marked every place where my lymph nodes were. He said that there were almost 12, but he didn’t want to remove them all because he didn’t want to mark up my leg. He said, “You’re young and healthy. I don’t want to mark up your leg because you’ll have scars.” I said, “Do what you have to do.” I had never had surgery before, so to have a hysterectomy and that at the same time, I was pretty nervous, but there was nothing I could do. I just dealt with it.
Both surgeries went great. I stayed the night in the hospital and was sent home the next day. Then I had my follow-up checkup for my hysterectomy. On my way there, the results came across on my MyChart, which I didn’t even expect. I thought I was just going to be scheduled for a follow-up appointment with my surgeon after my gynecologist. MyChart has its pros and cons. It sent me my test results and, at that time, it wasn’t good.
I opened it up and had no idea what “metastatic malignant melanoma” meant. Honest to God. I consider myself a pretty intelligent person, but I was in shock when I saw that. I didn’t understand. I know malignant and metastatic are cancer terms.
I get to my gynecologist and as soon as he walked in the room, he looked like he was nervous and up in arms. I said, “Doc, I have to show you this.” I showed him the MyChart and said, “Can you tell me what this means?” He said, “I’m not at liberty to discuss that part because it wasn’t my part of the surgery.” Now I’m freaking out. He said, “I just got off the phone with the surgeon. You can call his office after, and they’re going to schedule an appointment with you.”
My husband was at the surgery center and saw the surgeon who did the lymph node removal. The surgeon told him everything. I still had to go to an appointment the next day, which is how I found out. I found out through a general surgeon. At this point, I didn’t know where it had traveled. I didn’t know the staging. I just knew that it was cancer.
We figured that if it’s metastatic, it traveled. He explained that the reason it’s metastatic is that it went to multiple lymph nodes, but he said, “I’m not 100% privy into cancer, so I don’t want to go deep into that. I don’t want to give you false information.” I think he knew, but he didn’t want to say, which I’m completely fine with.
At that point, I was dumbfounded. I thought, “I’m healthy. How did this happen to me?” I did a little bit of research when I got home, which was the worst thing I could have possibly done, so I shut my computer and said I wasn’t doing it.
Hearing “stage 4” and what came next
The next day, I was able to get a PET scan through my husband’s friend. I got the results immediately because he was able to go in and check them. He called my husband and said, “Buddy, I don’t have the greatest news for you. Is Jenn around?” My husband put it on speaker and he said, “It traveled. It’s in her lungs. It’s stage 4.”
I dropped to my knees and immediately said, “I’m going to die. But I feel so good. When is it going to hit me? When am I going to start feeling like I have cancer? Because I feel good.” That’s when everything changed for me.
That day, we called my family to come over and my entire family came. I was a wreck. Anybody who hears, “You have stage 4 melanoma,” instantly thinks you’re going to be given so many months to live. I thought, “I’m done. I’m dead, I’m going to die. I’m 49 years old and I’m living with cancer inside of me.” I had a very difficult time understanding.
We were now at Christmas time. Not only was I diagnosed with cancer, but I had to be happy-go-lucky at Christmas. I didn’t have to, but I wanted to be. I’m with my family and my husband.
I was extremely blessed to get an appointment at Cleveland Clinic in Cleveland, Ohio. My family has a friend who works there. My brother sent out an email and I was lucky enough to get an appointment with an on-call melanoma specialist on December 29th. That is when my journey started: December 29th, with the medical director of the oncology division of melanoma. I was so happy because I didn’t want to waste any time.
I wanted to get all my medical records from every single doctor: the MRIs that I had on my back at one point in time, my primary care physician, and my PET scan. I had everything ready to take to my oncologist. On December 29th, I walked in and said to myself, “I’m not going to cry. I’m not going to use the word ‘death.’ I’m not going to ask for a timeframe. I’m going to educate myself on this and rely on her because she is the professional to get me to the place where I can say, ‘I beat this.’” December 29th is when I started my journey.
Choosing aggressive immunotherapy and discovering it had spread to my brain
At this point, I did not know yet that it had spread to my brain. When I met her, she saw my PET scan and went through what type of treatment she recommended and what she thought would be best for me, considering my age and being so healthy. She talked about just doing Opdivo (nivolumab). She said, “I think 30% of people respond well to this.”
I said, “No. I don’t want to be that. I want to be the miracle girl. I want to be known as the girl who was more of a percentage. I want to be the face of melanoma that’s going to beat this. Please be more aggressive with me. I have stage 4. Is there a way that you can be more aggressive?”
She said, “There’s a combination regimen: Opdivo (nivolumab) and Yervoy (ipilimumab). I’m not sure I want to do that to you because the side effects are extremely tough. I don’t want you to have to go through that. I think you would be fine just on Opdivo (nivolumab). But stage 4 melanoma and melanoma itself loves the brain, so I’m going to send you down to get an MRI.” At this point, I was thinking, “You’re the professional. You’re the doctor. I trust you with my life or I wouldn’t be sitting here.”
She called down and I was able to go and get my MRI. She said, “Let’s wait for the results. I’m going to watch for it. As of right now, the plan for you is just Opdivo (nivolumab).” She gave me the side effects. They weren’t as bad as I thought they would be; typical flu-like symptoms. You get an IV and sit there for an hour. She went through a lot more information. She gave me booklets and pamphlets. She went through what she expects from me in terms of side effects: if you get this side effect, call this line; we want to treat it as quickly as possible.
As I’m sitting there, I’m thinking again, “I’m healthy. I don’t feel sick. Why do I have this?”
At the end of our appointment and on our way home, my husband and I went to meet with my nephews to have lunch with them. Probably 25 minutes into our lunch, I get a call on my phone from the Cleveland Clinic. Right away, I knew. They said it was her nurse. She said, “Hey, Jenn. How far away are you?” I live an hour and 20 minutes from the Cleveland Clinic, but we were 30 minutes away. She said, “Can you come back?” We knew then. I could tell by her voice.
When we got back, my doctor said, “It spread to your brain.” I was still in shock. No headaches, cognitive issues, or brain fog. I was myself. When she told me that, she said, “I think I’m going to change your treatment plan.” I said, “Thank you. Be as aggressive as you can, please.”
She said, “We don’t treat melanoma like you’re done, even though you’re stage 4 and it went to your lungs and brain. You’re a healthy individual. We can do immunotherapy. That’s the first line for patients who have what you have.” I said, “Okay, when can I get this? When do we start this? Can I come back tomorrow?” I was so determined. She said, “I’ve never had a patient who wanted to start this and was so positive about this.” I said, “This cancer isn’t taking me, so let’s go.”
Gamma Knife for brain lesions and starting Opdivo + Yervoy
She said, “What I want to do is deal with your brain first.” She called neurology and set me up with a neurosurgeon. She works with a bunch of neurologists because melanoma loves the brain. I was able to walk downstairs and meet with the neurologist.
She said, “Gamma Knife is the way to go.” I had seven lesions on my brain. They do Gamma Knife surgery for people who have fewer than 10 lesions. I didn’t have to have them surgically removed because they were small and weren’t close to the brain stem. The neurosurgeon said, “This should do the trick.”
They went through the whole procedure, talked about my mask, and what way I wanted to go. He thought they could do a smaller dose because there is a maximum dose you can get, but I was on the lower dose because he felt, with the size and whatnot, that they would dissolve themselves. We scheduled that and also my first immunotherapy. I was going to start four treatments of immunotherapy with Opdivo (nivolumab) and Yervoy (ipilimumab). She said, “We are going to try to get you through all four treatments, but let’s do your Gamma Knife first.”
I had Gamma Knife on January 7th. You go into this machine and have to wear a mask. I called it my superhero mask. I lie in the machine and it’s as tight as can be. The mask is on your face and you literally can’t move. Nobody can be in the room with you because all these beams shoot into your head, right into those lesions.
I had to be on a very small dose of a steroid for five days. I started my first immunotherapy treatment on January 17th. It would have been too much for me to have that strong treatment earlier.
Brutal side effects from combination immunotherapy
Immunotherapy was a butt kicker. I could only make it through three treatments. The percentage of people making it through one treatment is extremely low. I should have stopped at two, but I pushed myself to three.
After my first, I started getting bad side effects. I felt like I had the worst flu imaginable. I couldn’t even touch my skin because my bones ached. I had a fever. On my inner thigh to my groin, it looked like a snake had traveled from point A to point B. It was the immunotherapy attacking all of those lymph nodes in my leg. I called it in because when you have a fever over 100.1°F, you have to call in and report all your side effects. I thought I had an infection in my leg because of how red it was. They said, “No, that’s the immunotherapy working.”
The side effects continued to get worse. There’s nothing you can do except take acetaminophen. You can’t take other medications because they would interfere with immunotherapy, so I just fought through it.
On the week of my second treatment, they had to do blood work to ensure that my kidneys, liver, and blood counts are good, because immunotherapy is tough on your organs. I had great blood work, so I was cleared to get the second one.
I immediately started getting a rash from head to toe. It was so severe that I was in and out of the hospital because it got so inflamed that it also caused colitis, which I didn’t know then. I was vomiting and going to the bathroom up to 25 times a day. I ended up at the local hospital. I said, “I’m still getting treatment, but I don’t care. This has to go away.”
Fast forward to my third treatment, I pushed myself. I probably shouldn’t have gotten the third treatment, but looking back, I’m glad that I did because I wouldn’t be right here today if I didn’t. It was the strongest one of all and put me in the hospital, which was when I found out I had colitis. It was attacking my gastrointestinal tract. I had to see a gastroenterologist. I couldn’t keep food down. I was in the hospital for 34 days, I think.
I had to get transported to Cleveland Clinic, even though I was admitted locally, because I couldn’t make an hour-and-a-half car ride. At the local hospital, they said, “We’re transporting you because you need to be with your care team. They need to treat you.” I spent 24 days there and 10 days at the local hospital. That’s where I started to get treated. I stopped the double dose of immunotherapy and had to be off it for two months because my body had to get strong enough for me to continue with just Opdivo (nivolumab).
I kept saying to myself, “I may have cancer, but cancer doesn’t have me. Stay positive, Jenn, even though you feel like you’re going to die.” I stayed positive and kept a positive mindset. I had the best support system, but my biggest hero was my husband. Outside of my care team, he got me through all of it.
It was a very brutal treatment. It’s pretty unheard of for people to even get to three doses, but I did, and I will never look back. If I had to do it again, I would, because I wouldn’t be here today if I didn’t get that treatment. All those side effects meant that it was working. I knew that, so there was a positive side to it.
Finishing immunotherapy treatment
I did 24 treatments of Opdivo (nivolumab) in two years. She told me, “If you get any horrible side effects where it’s attacking your organs, I’m stopping it.” I said, “It’s not going to, and you’re not stopping it, because I’m getting through it and I’m going to get to the finish line. and I’m going to prove to everybody that I can do it.” And I did.
I finished my last treatment in January, and boy, did I celebrate. I celebrated every single treatment that I had because I was able to get through it. I still had major fatigue, and I would get rashes here and there that looked like chickenpox.
Before every treatment of Opdivo (nivolumab), I had my blood work done, and I never had any bad blood work results. They were all in the green every single time. Twenty-four treatments and I never had bad blood work. All of my results were good. That told me that all that hard work and dedication of working out and staying healthy contributed to this, and I was able to get through them all.
Rebuilding after cancer
During that time, it was hard for me to work out because of the fatigue. The days that I felt good, I walked on the treadmill, but I had major weakness in my legs. I lost all muscle mass. I went from a healthy 126 pounds to 90 pounds because of the colitis, so I lost all muscle mass in my legs. I couldn’t even make it up my steps.
During the first week of being home, my husband had to carry me up the steps. I said, “You’re not carrying me again. I’ll sit and push myself up the steps. I have to get this back,” because I was so determined. Now I’m back working out four to five times a week and doing Pilates again. I feel great. I feel wonderful. I’m getting stronger each day. I reward myself with good food and dinners. I reward myself with anything that I can. I’m a warrior. I deserve that.
How cancer changed my life
I get PET scans and MRIs every three months, but because I’m done with treatment, the MRIs have been moved to every four months. Every single time I have one, it’s successful, and it reminds me: I may have cancer, but cancer doesn’t have me. Life is such a beautiful thing, and we only get one life.
I love my family so much. I am such a family-oriented person. I cherish it and I celebrate it every day. I wake up every day so thankful that I’m waking up. Every single night my husband and I go to bed, we pray. We’re so thankful that we can see each other, walk, drive, eat, shower, talk, and see. Life is such a beautiful thing, and I never lose sight of that. I’ve always been a very positive person, but this made me appreciate the small things even more.
If my husband’s talking to me about his job and venting about something, I say, “It’s going to be okay. Everything’s going to be fine.” If I have to get my PET scan, I say, “Please, this is going to be fine. I’ve got this.” Nothing is worth stressing about. I know that sounds crazy because there are things you can stress about, but in the grand scheme of things, there aren’t. There’s nothing to stress about. If you keep a positive mindset and say to yourself, “I can do this,” or, “Why be sad today? You can choose happiness,” it’s your choice. You can choose happiness, so that’s what I choose. My husband’s the same way.
All of this has taught me I can do it. It taught me how to be a warrior going through the most difficult thing in my life. I beat it. I’m two and a half years out from this. I’m alive and well. My doctor said, “Live your life,” and I have. I live my life.
Whether you have any stage of cancer or are struggling in life with something else, always say to yourself, “I’ve got this,” because you do. I said that to myself every day: “Jenn, you can do this.” I love life and I’ve learned to love it even more.
What I wish people knew
If I were in front of a group of people who didn’t know a whole lot about melanoma, the first thing I would say is: stay very safe in the sun. Wear sunscreen. It doesn’t matter if it’s a cloudy day or a rainy day. Protect yourself and wear sunscreen. I’ll never tell somebody to stay out of the sun, but protecting yourself is so important to do so.
Do not go in a tanning bed. That is one thing I am very passionate about. It’s the worst thing. I did it. I was a sun worshiper. I did it, and I think that’s why I’m here today. It didn’t come from a mole. I don’t have a primary location.
Be your own advocate with your skin. If you see something on your skin that you don’t like, you make your dermatologist remove it or biopsy it. You have to be your own advocate. I look back and if I were my own advocate when I first had this all checked, maybe I wouldn’t be in this situation. I’ve learned to be my own advocate. There are Google doctors out there; don’t pay attention to that. Find good resources, but be your own advocate.
My purpose now
I don’t care what type of cancer they have; if anybody feels the need or wants to reach out to me to talk, ask questions, or share concerns about cancer in general, the mental aspect of it, and how to move forward from it, know that I’m very available at any time. It’s a passion of mine. I’m a mentor. It’s my calling in life to help others. If that’s something that I can do to give back, I’m here for anybody. I’m available anytime.
Symptoms: Initially asymptomatic, then a lump in the groin enlarged and changed color Treatments: Surgery (lymphadenectomy), radiation therapy (Gamma Knife radiosurgery), immunotherapy (Opdivo/nivolumab and Yervoy/ipilimumab)
The Power of Personalized Medicine: Biomarker Testing Guided Maggie in Her Stage 4 Lung Cancer
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
In May 2021, Maggie celebrated her 60th birthday with a profound sense of optimism, believing it would be the best year of her life. However, a series of peculiar symptoms — including ocular migraines, a blood clot in her leg, and vision problems — soon derailed those plans. Following a misread EKG and a persistent cardiologist appointment, a CT scan eventually revealed stage 4 non-small cell lung cancer (NSCLC) with metastases in the brain. Despite the devastating news, Maggie’s narrative shifted from a fear of immediate decline to a focus on scientific advancement when a blood biopsy identified an EGFR mutation.
The emotional turning point of Maggie’s experience occurred when she realized that cancer treatment is not one size fits all. Initially expecting the carpet-bombing approach of traditional chemotherapy, she was instead prescribed a targeted therapy pill that led to no evidence of disease (NED) within just two months. This revelation transformed her from an overwhelmed patient into a dedicated advocate who views her scans as vital information rather than sources of terror.
Over the last four and a half years, Maggie has navigated five lines of treatment, utilizing repeated biomarker testing to identify new resistance mutations like MET amplification and MET overexpression. Her experience highlights the critical role of genomic testing in accessing cutting-edge therapies, some of which were FDA-approved only a year ago.
Today, Maggie remains focused on the blue sky behind the clouds, using her voice to humanize the statistics for drug companies and providing peer support to those newly diagnosed.
Watch Maggie’s video or read the interview transcript below to know more about her story:
Biomarker testing is the gold standard for personalized care: Maggie emphasizes that next-generation sequencing (NGS) and tissue biopsies are essential for identifying specific mutations that can be treated with missile-like targeted therapies rather than broad chemotherapy
Persistence in the diagnostic process can be life-saving: Despite being told her heart rhythm was normal and she didn’t need a cardiologist, Maggie kept her appointment, which led to the CT scan that finally caught her cancer
Research is the foundation of hope: Maggie views medical research as the engine that provides new treatment options, noting she is currently on drugs that did not exist when she was first diagnosed
Scans are information, not just a source of anxiety: By reframing scanxiety as a tool for data collection, Maggie feels more empowered to collaborate with her oncology team on next steps
Community is a vital resource for navigating side effects: Joining mutation-specific groups like EGFR Resisters and MET Crusaders allowed Maggie to exchange practical advice on managing treatment-specific issues like skin conditions or edema
Even in the face of a terminal diagnosis, it is possible to find a life that is more fulfilled and grounded in gratitude than it was before the illness
Radiation therapy: stereotactic body radiotherapy (SBRT)
Clinical trials
Chemotherapy: combined platinum-based regimen
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.
Hi, I’m Maggie and I live in Northern California. I have stage 4 lung cancer. I was diagnosed in the summer of 2021.
I have an enlarged lymph node pressing against my vocal cords, so it makes my voice sound hoarse.
Passions, purpose, and the healing power of cats
I have several passions. One of my biggest passions is travel. I grew up with my dad working for an oil company, so we lived in various countries around the world. I got used to traveling to exotic places. I love to go on vacations, whether it’s around the world or locally.
Another passion is animals, cats especially. I stopped working in 2022 and was looking for things to do during my free time. A local animal rescue near me, called Joybound, was looking for people to volunteer for cat socializing and feeding. I went through the training and signed up. When I started volunteering, I’d go once a week. It basically involves playing with cats or socializing them; bringing them out of their shells if they’re shy cats or having them learn better behaviors if there are some problem behaviors.
It’s something that has helped me since my diagnosis. When I’m focusing on a cat and in the room with them, if I have upcoming scans, doctor’s appointments, or treatments, those are completely out of my mind because I am so focused on that little animal. It has been helpful. It’s like therapy for me. They give us back unconditional love.
Why advocacy became a core part of my cancer journey
Part of my personality and how I’ve always been is that I like to help others. Not long after I got diagnosed, I signed up with an organization that does peer mentoring for newly diagnosed lung cancer patients. That’s how I started my personal advocacy, by helping other people who were going through a similar experience to what I had gone through to navigate the unknown and how we all feel at the beginning of a diagnosis when we hear those words: “You’ve got cancer.”
The advocacy where I got hooked on telling my story was in 2024. I went to Washington, DC, for the Rally for Medical Research; it wasn’t just cancer, but all kinds of medical issues. We went and talked with our representatives and senators about more funding for the National Institutes of Health (NIH) for different kinds of research. I got to tell my story about lung cancer and the importance of research. If there were a headline for my life, it would be, “Keep hope alive — why research matters,” because without research, we can’t have hope.
I realized that I could have an impact on the lives of others by telling my story. I got more involved with The White Ribbon Project, ribbon builds, and going to various events. With the Lung Cancer Research Foundation, I am part of their peer review, where patient advocates review grants for funding for different research projects. These are things where I feel like I can make a difference and learn.
From birthday optimism to a shocking stage 4 lung cancer diagnosis
In May 2021, I turned 60 years old. I remember waking up on my birthday and having this feeling that this is going to be the best year of my life. I don’t always feel that on my birthday, but I remember feeling that on my 60th.
About a month and a half later, I had an ocular migraine while I was working. There was no pain involved. It’s like looking through a kaleidoscope with white glass and typically lasts 30 seconds or a minute in one eye and maybe the other. I Googled “kaleidoscope vision” because I remembered experiencing something similar a few years before. Sure enough, it was an ocular migraine. I talked to my optometrist about it several years ago and learned it can be brought on by stress. It was a stressful time at work because we were getting ready for an audit, so I didn’t think anything about it.
Then, a couple of weeks later, I had this pain in my leg after standing up and it didn’t go away. I thought it was a muscle cramp. It turned out to be a partial blood clot in my leg. I continued to have weird symptoms. This was around June and July.
I had other vision problems. I was referred to an ophthalmologist who ran a bunch of tests, including a complete blood count (CBC). The white and red counts were off, but nothing that would raise any big red flags. In the meantime, my optometrist suggested I get a physical because I was having all these weird symptoms, so I made an appointment to see my primary care physician (PCP) at the beginning of August.
A couple of days before the appointment, I experienced pain on the left side of my chest and then again a couple of days later. I mentioned it at my PCP appointment, so they did an EKG. The results indicated some abnormality with my heart rhythm, so I was referred to a cardiologist with an appointment for a couple of weeks out. In the meantime, I got a message from my PCP’s office that either the machine had made a mistake or somebody had misread the results. There was nothing wrong with my heart rhythm, so I didn’t need to see a cardiologist. But I decided to keep the appointment.
I explained to the physician’s assistant in cardiology what had been going on that summer: the vision and balance problems, the deep vein thrombosis (DVT) in my leg, and the pain in my chest. She thought I could be developing a pulmonary embolism, even though I was on blood thinners. She ordered a CT scan and an ECG.
I had the CT scan on August 31st at 8:00 a.m. and got the results in my health portal by 9:30 a.m. Of course, I opened it and immediately read words like “metastases.” I thought, “Wait, what? What’s going on?” I was able to get in to see my PCP at the end of the day. My PCP and the PA in cardiology were very apologetic that I got the results before they had a chance to tell me. I asked my PCP, “What are the chances that this isn’t cancer?” She said, “There’s about a 1% chance that it’s not cancer.”
A subsequent biopsy confirmed that it was non-small cell lung carcinoma. I had a brain MRI that found metastases in my brain, which were causing the vision and balance problems. I never had any lung symptoms, so it was shocking to me to have lung cancer. Of all the cancers to get, it was a complete shock.
Originally, before they found the brain mets, they thought it might be stage 3 cancer. I remember seeing a thoracic surgeon first, thinking I could have surgery. But then they did the brain MRI, so it was now stage 4. In my extended family, nobody had lung cancer, but there were people who have had stage 4 cancer and didn’t live very long. I thought all cancer was the same. I thought, “Stage 4. Okay, it’s September, I’ll get chemotherapy and lose all my hair, then I’ll be dead by Christmas.”
Surprisingly, that’s when I first learned that cancer wasn’t one-size-fits-all. My oncologist fortunately ordered a blood biopsy, which is how I found out that I had an EGFR mutation and that there was a targeted therapy pill I could take. I started taking that pill in October and by December, scans showed that there was no evidence of disease anywhere. There was nothing in my brain and my lungs.
Going back to the pain on the left side of my chest, there was no cancer there. The cancer was in my right lung and right lymph nodes. I never had that pain again. I take it as a sign from above, as if somebody was shaking me, “Maggie, come on. You need to get this tested.” I’m absolutely grateful for a machine that made a mistake.
Learning about my EGFR mutation and that lung cancer isn’t one-size-fits-all
At the time, I remember my oncologist doing a blood draw. I don’t remember her explaining about biomarkers. She might have, but in those first few months, I felt like I was in a fog. It was such a shock to have lung cancer, and then finding out that I wouldn’t have chemo, it was different.
Because I had a mutation, my oncologist had me get a second opinion from an oncologist at the University of California San Francisco (UCSF) who was more familiar with my mutation and explained a little bit more about it. She guided me to some different groups, like EGFR Resisters and Lung Cancer Research Foundation. That was when I also started my quest for knowledge about lung cancer. I’m not an expert, but I sure know a lot more than I did four and a half years ago.
The emotional whiplash of a cancer diagnosis
The brain fog comes in from being so overwhelmed. Part of my personality, in addition to liking to help people, is that I like to be in control of things, so cancer threw me for a loop because it was not part of my plan. When I woke up on my birthday in May and when I felt it was going to be the best year of my life, this was not what I had envisioned.
I started with the targeted therapy pill in October and had scans in December, which showed no evidence of disease. I felt like I’d been punked. Like somebody would come out and say, “Hey, Maggie, sorry; we were kidding,” that the machine made a mistake, or maybe someone else’s test results somehow got dropped into my chart, as crazy as that sounds.
One thing somebody told me early on was to make sure that I brought somebody else with me to my appointments. Fortunately, for all those appointments at the beginning, I had somebody with me who was hearing these words that I wasn’t hearing. But still, having cancer, and then suddenly they couldn’t find the cancer? I remember a friend even said to me, “Maggie, you don’t seem as happy as you should be. You don’t have cancer.” I was thinking, “I’m getting my head around the fact that somebody told me that I did have it. What do you mean I’m not happy enough?”
My treatment journey through five lines of therapy
My targeted therapy resulted in no evidence of disease after two months. I stayed that way from January through September 2022. Then a scan in September showed that the cancer had come back at the original tumor site, which was in my upper right lobe. One of the options was radiation or stereotactic body radiation therapy (SBRT). I had a cruise planned over Thanksgiving, so the radiation had to get done in November before my cruise, which thankfully worked out. Doctors are so accommodating. I find all the cancer doctors are wonderful.
In the spring of 2023, another scan showed some more progression. My oncologist ordered another blood biopsy and also a tissue biopsy from my lung tissue. The blood biopsy came back and showed that I had developed a resistance mutation: MET amplification. This can happen a lot of times for EGFR patients who are on tyrosine kinase inhibitors (TKIs). It’s a resistance mutation that develops.
What was fortuitous was that the clinic I was going to happened to have a phase 2 clinical trial that was opening up and accepting new patients for people in my exact situation: EGFR patients who had progressed on a TKI because of MET amplification. I went on that clinical trial. I was in the control group, so I stayed on the targeted therapy for EGFR and added a targeted therapy drug for the MET amplification. That treatment regimen worked for nine months. It seems I could go in nine-month intervals.
Then a scan showed the cancer had come back. The site had grown more than 20 or 25%, whatever the cutoff was for the trial, so I got dropped from the trial. I had some more SBRT. More scans in the summer of 2024 showed more progression.
The next option was chemotherapy. On World Cancer Day, August 1, 2024, I started chemotherapy. I did six rounds of platinum-based therapy and some more rounds of the other chemo drug alone.
Then in January 2025, a scan showed progression again. The chemo had worked for a while. I had stayed on the targeted therapy pill. Blood biopsies, since the first one in 2023, have never shown MET amplification. But I’ve had tissue biopsies from lymph nodes and those showed that I still had the MET amplification in addition to EGFR. My doctors knew that we needed to treat both mutations in order to be successful in pushing back the cancer.
I was on combined drugs for the MET amplification and a different drug for the EGFR mutation from March through October 2025. But one of the typical side effects of the drug for the MET mutation is edema. I ended up getting severe edema in my lungs as pleural effusion, so I had to have thoracentesis procedures to remove fluid. I was short of breath all the time. The side effect of the drug outweighed the benefit. It was working, but it was just outweighing the benefit, so I had to stop treatment. That was my fourth line.
Recently, I started my fifth line. Another test that my oncologist did was immunohistochemistry (IHC) testing. You do a FISH test to get the MET amplification result, and you can do IHC, which tests for overexpression. In addition to amplification, I also have MET overexpression. It’s a double-edged sword in a way, but this one opened up a new line of treatment, a new drug that will work better for me because it targets the overexpression. I’m going on that and then back on another drug to target the EGFR mutation.
I’ve gotten used to seeing progression in my scans. I look at scans as information. I used to get freaked out by them, but not so much anymore. If something is going on, it’s going to help direct my oncology team and me to figure out the next line of treatment, and I’m always hopeful that there will be a next step.
Why biomarker testing is critical for every lung cancer patient
Biomarker testing is critical for getting patients the right treatment, especially for lung cancer. It’s not one-size-fits-all. It’s not just chemo for everyone. You have to know what your biomarkers are. You have to get genomic testing, next-generation sequencing (NGS), and RNA and DNA testing, because there are drugs out there that have been developed to target specific mutations. If you have a specific mutation, then you can get access to the drug that’s going to work for you.
It’s not throwing everything at it and hoping something will stick; it’s a dart. It’s a little missile attacking your mutation. I have this analogy in my head. The cancer cells are like sleeper cells, the little spies that look like everyone else. They come into a town, and everybody accepts them. They’re a little bit different, but they seem fine. Then suddenly, these sleeper cells get activated and they start killing the other cells in the town.
The first method of attack can be chemotherapy, which I consider like carpet bombing. You’re killing those sleeper cells, but you’re also killing everybody else. But then you’ve got the SEAL team that comes in, the snipers. That’s what the targeted therapies are like. Those are drugs that go in like little missiles and target those cancer cells, leaving the healthy cells alone. The healthy cells can still live and thrive in your body, but the cancer cells will be gone.
How lung cancer communities and mutation-specific support groups change everything
Find your people, people with the same mutation. First of all, finding other people with lung cancer is so important. I went to a LUNGevity Foundation event. They hold an annual event called the HOPE Summit, which I went to for the first time in 2024. I was skeptical. I thought, “What’s this going to be like, being in a room with a bunch of people with cancer? Is it going to be depressing?” On the contrary, it was uplifting. You see other people and they’re thriving. You can learn from other people.
Then, drill down further to the specific groups. There are the MET Crusaders, which I’m involved with, and EGFR Resisters. Within those groups are your people, because those are people who are on the same drugs as you are. They may even be seeing the same doctors and specialists. If they’re on the same drugs, they’re probably having the same side effects. Let’s face it: these drugs are killing cancer, so they’re probably going to have some not-so-pleasant side effects from time to time.
Being with other people in your mutation community, you learn from them. I can also give advice but not medical advice. You can share, “From my experience, these are the lotions that I’ve used that have worked well on this skin situation I had. But be sure to ask your dermatologist first.” You don’t feel alone, like you’re the only person with this situation.
I’ve met so many amazing people since getting diagnosed with lung cancer. I laugh sometimes: get lung cancer, double your friend count on Facebook. It’s an amazing community. I’m sure other cancer communities are exactly like that. I’m not grateful that I have cancer, but I’m grateful that I met all of these wonderful people and have had opportunities presented to me that I wouldn’t have had without lung cancer.
What I learned about biomarkers and personalized medicine
Biomarkers allow for personalized medicine. It’s about finding the right treatment for that patient at the right time. Any time I’ve had progression, I’ve either asked for a blood biopsy. It had been a year since I had a tissue biopsy, so I asked my oncologist, “Can we do another tissue biopsy?” Tissue biopsies are the gold standard to find out what’s going on with the cancer. A blood biopsy is only as good as what happens to be circulating in your bloodstream at the time.
It’s about personalized medicine and tailoring the treatment to the patient. The patient and the oncologist need to be able to work together and come to an agreement on what that treatment will be. Educating myself on what drugs are important for what treatment and what drugs are for what biomarker is critical.
Recently, I was going to go on a drug for the MET overexpression, and I asked about a drug for EGFR. Initially, my oncologist said, “The drug for overexpression has some chemotherapy with it, so it should be able to take care of the other mutation.” I remembered reading something and talking with another oncologist in the past, so I reached out to that other oncologist, who then directed me to a clinical trial that had been done. In that trial, people who had MET overexpression and EGFR did better if they were on drugs for both mutations. I was able to look at the clinical trial results and cite results from that study back to my oncologist. I brought that information to my oncologist and he agreed. Now I’ll be on drugs for both mutations.
How shared treatment decision-making can transform your care
I’ve always gotten second opinions. My oncologists have always been supportive of that. At the beginning, I was seeing a general oncologist, and she encouraged me to get second opinions. When I had progression at the beginning of 2025, I switched my care to a thoracic oncologist. This far in, I want to be with a lung cancer specialist.
My oncologist and I make the decisions together. He never acts annoyed when I bring up other perspectives. The other people I consult with all know each other. If I say, “I talked to Dr. So-and-so,” he can talk with that doctor himself or look up a study.
Not everyone knows everything, even if you’re an expert. I’m so appreciative of my oncologist and the input that I have, because it’s ultimately my life. If he doesn’t agree with something, he explains why he doesn’t agree with it. It’s not like I always get my way, but I feel heard.
How advocacy, research, and letting go sustain me through stage 4 lung cancer
I like to have a plan for things. A friend of mine told me that for someone like me, getting something like cancer, where you can’t control what’s going to happen, has been a good learning experience to let go of some of that control, to let things play out, and see what happens.
I do what I can to control what I can. I can control my advocacy efforts. I can control my research, like looking up new drugs and going to conferences. I like going to lung cancer and cancer conferences. I feel like I can learn a lot about new treatments on the horizon. I can also let people see what someone with stage 4 lung cancer looks like. To the people at the drug companies, this is who you’re making these drugs for. You’re not doing it for some faceless person. You’re doing it for me.
Living fully with stage 4 lung cancer through gratitude and reframing
Even before I had cancer, I learned that we all have emotions. We feel happy, sad, and anxious, among other things, and there are thoughts that go along with those emotions. I learned early on that I can control my thoughts. I can decide how I want to look at something.
The way I chose to look at lung cancer is, “What am I going to learn from this?” I don’t look at it like, “Woe is me.” Some days, I feel that way, but mostly I think, “What can I do to live my best life? What can I do to be fulfilled?”
My life is so much more fulfilled now than it was before I had lung cancer. I have gratitude now that I didn’t have before I got diagnosed, because I know now what it feels like to not know if I’ll have tomorrow or next year. My goal right now is to make it to five years. If I do, I will have gone on this fantastic trip up to Greenland and Iceland to see the solar eclipse; that’s my plan for August.
I’m learning gratitude, how to control my thoughts, and how to reframe things. What can I learn from this situation? How can I look at it differently? Is this a helpful thought? I’m not ignoring my emotions or my feelings, but I’m trying to reframe and think about things in the best way I can.
Why every lung cancer patient should consider clinical trials as an option
Everybody should consider clinical trials. There are different phases of clinical trials and different trials. I’ve been in two clinical trials, and I’m in another one related to the radiation I had. As a patient, make sure the trial is explained to you, especially the benefits and risks. You’re getting access to drugs that you might not otherwise have. There may be drugs that your insurance won’t approve, but you can get through a trial. I feel good about having done the trial because I feel like I’m helping people in the future who will hopefully benefit from the experience I’ve gone through.
Starting a fifth line of treatment and preparing emotionally for a new drug and renewed hope
My biggest concern with a new drug is usually side effects. What are the potential side effects going to be, and how can I manage them if they come up? What’s the plan if the side effects get to be too much? I personally go in thinking that the drug is going to work; that’s not my concern. It’s just something new.
This new drug has been recently approved by the FDA. It wasn’t even available when I got diagnosed four years ago. I didn’t even know I was a candidate for it until October 2025. But when I first got the infusion, I thought that I would feel something. I didn’t, but I know that’s good. No side effects. I hope it’s in there, killing all those cancer cells and doing exactly what it’s supposed to be doing.
My advice for patients who don’t know about biomarker testing
Some of the different lung cancer groups have information on their websites about biomarker testing. Where I learned about it was the Lung Cancer Research Foundation. They have done webinars and past webinars are available on their website. There is one where they talked about biomarker testing and next-generation sequencing, the importance of tissue testing, and the kinds of tests to get for biomarkers.
Definitely ask your oncologist. If your oncologist isn’t doing biomarker testing, then you need to ask for it. There are different blood biopsy companies that do biomarker testing. Though tissue testing is still the gold standard, sometimes it’s difficult to get enough tissue samples. If you’re lucky, like me, to have lymph nodes that are easy to reach, where they can get more tissue, those are great for biomarker testing.
You won’t know what treatment you need without biomarker testing, even to know if you don’t have a biomarker. In addition to biomarkers, there’s PD-L1 and that can direct treatment, too. If you have a higher PD-L1 number, you might be more of a candidate for immunotherapy than someone with low PD-L1 numbers. These are important things to know that can direct your treatment as a new patient. Without that information, it’s like throwing a dart in the dark.
What hope means to me
Hope means a good future. It means research. Research means hope. Hope means research. Without research for new drugs and new treatments, treatment comes to a standstill. I’ve been on two different drugs that weren’t around when I was first diagnosed. Even the way my mutation is treated has changed; it’s treated differently now for newly diagnosed patients. That’s part of hope. For me, it goes along with gratitude and being more in the moment. Hope is so important because without hope, what is there?
My message of hope for anyone feeling hopeless
There was something I learned through meditation: the blue sky is always there. It’s covered by clouds sometimes, but the blue sky will always come back. You might be feeling hopeless in the moment, and it’s important not to ignore those feelings. You have to live that. You have to lean into those feelings. But that’s not a forever feeling. You will feel hopeful again. You will move through it. If you’re in a dark place, you will move through it.
Reach out to friends and family. If you’re religious, reach out to religious support groups. Talk with your oncologist. Talk with your oncology nurse. Talk with other people online. Look for a peer support partner. There is hope. There is blue sky behind the clouds. Trust me, it’s there.
Gratitude, oncologists, and a life without an expiration date
I’m so grateful to be able to tell my story and for people in the field of thoracic oncology. I’m appreciative of anybody who goes into oncology. I’ve been fortunate that everyone I know in oncology has been wonderful.
I’ve also never had anyone give me an expiration date. And I’m grateful for that.
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.
From Chemo Exhaustion to Targeted Therapy: Clara’s Stage 4 ALK+ Lung Cancer Experience
Living with stage 4 ALK-positive non-small cell lung cancer, Clara has had her entire life reshaped by diagnosis, treatment, and the constant recalibration that serious illness demands. She moved back home to Iowa after years in Colorado, trading her independent adult life for the familiar walls of her childhood bedroom and the support of nearby family. In the middle of all that upheaval, adopting her dog Bernie became a lifeline, giving her structure, purpose, and a reason to get outside, even as medications changed her body and added significant weight gain.
Her early treatment included chemotherapy and maintenance immunotherapy. For a while, the scans looked promising. Her tumors were shrinking or holding steady, which is a meaningful win with advanced disease. When a later set of scans showed worsening metastatic disease and new spread to her spleen, she faced another round of aggressive chemo that repeatedly landed her in the hospital. The physical toll, the constant sickness, and the feeling that she was doing chemo more for others than for herself pushed her to say, “I am done.” She made that choice fully aware that it could mean her cancer might worsen without more treatment.
At the same time, additional biomarker testing revealed that her cancer was ALK positive, opening the door to targeted therapy in place of chemo. Starting Lorbrena (lorlatinib), a third-generation tyrosine kinase inhibitor specifically for ALK-positive non-small cell lung cancer, shifted both her symptoms and her outlook. Instead of enduring relentless infusions and hospitalizations, she now takes a pill once a day with far fewer side effects so far, and she is hoping upcoming scans will show stable or shrinking disease.
Alongside physical treatment, Clara is weighing deeply personal decisions about pelvic tumors, potential surgery that could remove her ovaries, and the grief of likely not having biological children. She is processing the realities of disability, financial toxicity, and a world not built for walkers and wheelchairs, even as she regains independence by driving again and leaving the walker behind. Through her “Cancer Questions with Clara” videos, she speaks candidly about taboo topics, like adult diapers and body image, to help others feel less alone, while reminding herself and her community that evolving research and new treatments can offer real, hard-won hope.
Watch Clara’s video or read the edited transcript of her interview for a follow-up to her story. Read how she first found out about her cancer here:
Targeted therapy for ALK-positive non-small cell lung cancer can offer meaningful options, including oral treatment with fewer day-to-day side effects
You are allowed to prioritize your quality of life and make treatment decisions that reflect your values — even when others may not fully understand
Biomarker testing can change the entire course of care, opening doors to personalized therapies
Clara’s experience shows how serious illness can reshape family roles, home, work, and even geography, while still making room for joy and reclaiming independence
Her transformation included moving away from chemotherapy, which she felt she was doing for everyone else, to advocating for herself, choosing targeted therapy, and using her story to educate and normalize difficult topics for other patients
Name: Clara C.
Age at Diagnosis:
30
Diagnosis:
Non-Small Cell Lung Cancer (NSCLC)
Staging:
Stage 4
Mutation:
ALK
Symptoms:
Pelvic pain and discomfort
Bladder issues related to pelvic tumors
Incontinence
Pain in the lower back and hip
Treatments:
Chemotherapy
Immunotherapy
Radiation therapy
Targeted therapy: lorlatinib
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I was living at my mom’s house right outside of Des Moines, Iowa, but now I’m at my dad’s house in a very small town a little further away from Des Moines. My dad still lives in the house I grew up in, so it has been nice to come back to my childhood bedroom.
What’s nice about my dad’s house is that he has a big yard, so I was able to adopt a dog, which has been a great addition to my life. I got him from the Animal Rescue League of Iowa. He has given me so much purpose and has definitely been a reason to wake up in the morning. He has provided me with a lot of structure and routine, and has made me active, taking him outside for walks, which has been great to get outdoors. It has also been great in helping me be active because I gained a lot of weight from cancer medication, so I am trying to lose that weight. Bernie, my dog, has been helpful in that regard.
Leaving Colorado and saying goodbye to my old life
After treatment, I thought that I would just return to my apartment in Colorado, go back to my old life, and everything would be fine. At that time, I learned that I would have to be on immunotherapy for the rest of my life. Traveling back and forth between Colorado and Iowa would be too much, so I decided to give up my apartment. I was unwilling to transfer my care to Colorado because I love my team in Iowa so much. I decided to clean out my apartment and be done with it, which has been a weight off my shoulders financially because I had been paying for it the whole time.
It was very emotional and very bittersweet to leave Colorado because I had spent my entire adult life there. I had a lot of life lived, a lot of memories, and a lot of friends.
It was good to reflect and to reminisce. I invited a bunch of my girlfriends out for dinner while I was there, and we had a “goodbye Clara” party. It was fun and special to have those women there. I wrote each of them a letter about our friendship, why they were important to me, and how sad I was to leave Colorado. We were all in tears at dinner, but it was a good send-off.
It’s good to be in Iowa permanently. I enjoy being close to family, so that has been the biggest perk of being back in Iowa for good, I should say.
How we discovered my cancer progression and changed treatment
The last round of my first cycle of chemo was on July 3rd. That round and the one prior to that sent me into the hospital for 10 days, both times. Obviously, I was glad to be done with chemo and be on maintenance immunotherapy. I was doing immunotherapy throughout the summer.
I had scans in August and they were great. They showed that my treatment had been working. There was a lot of shrinkage. Different parts of my cancer were either shrinking or staying stable, and that’s the goal with stage 4 cancer: to keep things shrinking or stable. Stable is great.
I continued with immunotherapy throughout the fall. I had my next three-month scans in early November, which came back horrible. They showed that everything was growing, and my cancer had also spread to my spleen at that time. The report literally said “worsening metastatic disease,” meaning everything was getting worse. That was devastating news because three months prior, the scans were great. I had a lot of hope and optimism. To get those results in November was devastating.
We had a scheduled surgery on my pelvic tumors for December 1st, but because my cancer had come back so aggressively in terms of growth, we decided to start an aggressive chemotherapy regimen again. It was a different drug. We started it immediately and had to push off surgery indefinitely at that point. That was hard for me because I so desperately wanted to get these pelvic tumors out since they cause so much discomfort and pain. One of my pelvic tumors is on my bladder, which causes me a ton of issues.
I did chemo round seven, which again put me into the hospital for another 10 days. I was getting sick again and again. After that seventh round, I was in the hospital up until the day before Thanksgiving, which was so frustrating. I decided, “I am done. I am done with chemo.” I felt like I was putting my body through so much.
I also felt like I was doing it for the wrong reasons. I felt like I was doing chemo for everybody else and not for me. I felt like they wanted me to do chemo because they wanted me to stay alive. Of course, I want to stay alive too, but I’m the one who has to go through it. I’m the one who has to put my body through treatment. It’s so hard on my body to get that sick all the time.
I decided I was done with treatment. I wasn’t doing it anymore, which was a hard decision because I knew what that meant. That means my cancer may get worse and there is nothing that can be done if I am not willing to do treatment.
At the same time, my oncologist had ordered another set of Tempus testing, which is testing for genetic mutations. They sent another biopsy sample in. We found out that I wasALK positive, which my oncologist was shocked to see because he had not seen anybody evolve into a mutation that was not there previously. The whole reason he sent a biopsy sample again was that Tempus testing can also determine what chemotherapy to use. Not only does it identify genetic DNA markers, but it can also help guide treatment options. He did it for the purpose of making sure he was giving me the correct chemo this time around.
When it showed ALK positive, he said, “Okay, we are going to stop chemo,” which I had already decided to do anyway. He said that with ALK-positive, they have a targeted therapy available. Targeted therapy is a pill that I take every day. It is not chemo at all. It is in replacement of chemo and has far fewer side effects than chemo does.
The specific one that I am on is Lorbrena (lorlatinib), which is a third-generation tyrosine kinase inhibitor (TKI) of the targeted therapies that are available for ALK-positive patients. That is specific to non-small cell lung cancer, I should mention. It is a very specific and very personalized treatment. I started the targeted therapy pills in December 2025. After being on them for about one month, I have had very minimal side effects, and I think I am responding to it pretty well.
With targeted therapy, it sometimes takes a lot longer to show results. Even though my next three-month scans are in February, they may not show exactly if it’s working yet. I am hoping they will at least show that everything is stable, if not shrinking. I am hoping for stable, and then maybe another three months after, the scans will show some improvements and positive results from the targeted therapy.
That has been a good thing. I am so happy that I’m ALK-positive and that the targeted therapy was available. I had decided I was stopping treatment. Who knows what would have happened to me and what that would have entailed?
How cancer research and funding directly impacted my treatment options
I am grateful for the targeted therapy. These drugs are available because of the funding for cancer research, and all of the cancer patients who came before me who participated in clinical trials and research that made these drugs available.
It’s interesting how some of these drugs were only approved within the last couple of years. If I had been diagnosed with cancer a couple of years prior, who knows what kind of treatment I would be on today or if I would be able to be on this? Everything worked in divine timing for me to be on this. It has been going well.
Learning about ALK positive and finding community
I knew about different biomarkers. I had heard of ALK, but I did not know much about the treatment available for them. It turns out there is a whole community of ALK-positive patients. It has been nice to connect with others on social media and other platforms.
I’m on the third-generation TKI. I have talked to other patients who are on the first- and second-generation drugs. Those ones seem to have more side effects. As research progresses, it seems like they are trying to get rid of the side effects, which seems to be working because I have had very minimal side effects. It sucks that every medication for cancer that I take has weight gain as one of the side effects, which has been frustrating. But other than that, it’s going well.
My treatment plan going forward, scans, surgery, and clinical trials
My next scans will be in February 2026. Based on those results, we will determine if I am still eligible for surgery. That’s why I’m hopeful that things are stable or shrinking so that I can have those pelvic tumors removed. They cause me so much discomfort and so many issues. Getting rid of them would be the best for my quality of life.
After that, I will have scans every three months. I don’t know what my options would be if the targeted therapy stops working, but hopefully, I do not have to worry about that. I guess another option would be clinical trials. I am open to them, but I would need a lot of information to make a well-informed decision about whether or not to participate. I am open to it if that is my only option down the road. For me, whatever I have to do to live that is not chemo, I am okay with.
Why surgery is only planned for my pelvic tumors and how it affects my fertility
There has not been talk of surgery on any other organs. They explained to me that if they were to go in and get rid of some of the cancer, it would not make that big of a difference. I have so much cancer in so many places that it would not do much, which is hard to hear.
I am grateful that they are willing to consider surgery on those pelvic tumors. One of them had shrunk back in August, but then in November, it had grown back to its original size, which is the size of a softball. I have a softball-sized tumor on top of my ovaries. If I go through with the surgery, they will remove both of my ovaries, which will deprive me of the opportunity to have biological children. I do not have any kids right now and that is something I have had to wrestle with.
I looked into freezing my eggs, but it is so costly and out of my budget. Plus, with how much I want the pelvic tumors out, I guess I am okay with taking out my ovaries, but that is something you have to grieve —the kids that I thought I would have that I will no longer have. I know there are other ways to have a family, but it’s hard to think that I will never have a kid that looks like me or inherit traits that I have. I am very artistic, and I would want my kid to be artistic and creative. That has been something I have struggled with and talked about a lot in therapy. That is not something I thought that I would have to spend so much time thinking about at 31. It has been a hard topic for me.
The hardest moments and what keeps me going
With the idea of giving up on chemo and feeling like, “If I do this, I do not know what is going to happen,” what gets me through is having faith that it is going to all work out. I lean on my faith and my religion.
Sometimes, I want to give up. It’s hard to be positive all the time about cancer or the fact that I still have cancer. It’s frustrating because I’m a year into this. I have gone through all this treatment. I have done seven rounds of chemo and ten rounds of radiation. It’s frustrating to compare myself to others who, once they are done with treatment, have clear scans and put their cancer journey behind them. I get upset that I still have cancer and that I will always have cancer. Why did this happen to me and to this extent? It’s frustrating that I do want to give up sometimes.
What keeps me going is that I want to keep living. My dad always tells me to focus on the big things and the fact that I am still alive. I’m grateful to still be alive and that I still get to spend time with my loved ones. It has given me this perspective that other people do not have: to focus on what matters. Not that other things do not matter, but at the end of the day, your loved ones and experiencing life are so important and something to be grateful for. I think that’s what keeps me going.
Why I share my story on social media and “Cancer Questions with Clara”
I do a series on TikTok called “Cancer Questions with Clara,” where I answer any questions related to cancer. I am very open. I will talk about topics that other people are uncomfortable with. I do not mind sharing at all.
It’s important because a lot of people do not know anything about cancer. A lot of people have not been touched by cancer in any way. They do not know anybody who has had cancer. Maybe their grandparent had cancer, but they were not close to them or did not see them go through it, so they don’t know anything.
I approach it by speaking to the person who does not know anything. I think that is important because it educates people on what others are going through. I also want to normalize a lot of things because many topics are very taboo.
For example, sometimes I have to wear adult diapers. I’m not ashamed to admit that, but a lot of people would be uncomfortable sharing that. I do not want people out there to feel alone. I know there are plenty of other young women who have to wear adult diapers due to incontinence they developed from something else or from cancer treatment. That sucks, but I do not want people to feel alone. I want people to know that it’s okay and normal, and that other people go through that, too.
That is why I share a lot of this stuff. I want to educate people, to help people feel less alone, and to normalize different side effects. Those are my main motivations for sharing. It’s also a little bit selfish because I share updates on my journey. I got tired of repeating myself all the time to friends and family. It has been nice to point them to my social media to see my latest update about where I’m at with treatment.
Topics I want to talk about more: dating, disability, and financial toxicity
I need to talk more about dating and intimacy for young people with cancer. That is a big one that could be talked about, and I have not touched on it.
Another big one I have shared before is that I was heavily relying on a walker and I have moved away from that. I no longer need a walker or a cane, which has been fantastic. I’m able to drive again, which is so nice and gives me more independence. I could talk more about different tools and things that go along with disabilities.
Using a walker opened my eyes to how this world is not set up for people with wheelchairs or walkers. It was so frustrating to go into a building that only had stairs and no elevator. Maybe that is something I could touch on more because I know a lot of people who get cancer and end up needing a wheelchair or a walker.
Another topic that is uncomfortable for people to talk about is finances. Financial toxicity is a huge thing in the cancer world, with how expensive cancer treatment can be and insurance copays and everything. Some people shy away from talking about money. It is important to share what resources are out there to help lower or decrease costs for cancer patients, and what kind of financial assistance is available.
Ditching the walker, driving again, and getting my independence back
It has been so nice to have that sense of independence back. Using a walker, I had to rely on people to help me all the time, like opening doors and going up the stairs. It has been so nice not to have to do that.
Driving again has been incredible. I do not have to ask people for rides. I do not have to have people load the walker in the car. I did not drive for seven months, which was crazy to think about. It has been such a relief to have my own car back. My brother was borrowing my car since I wasn’t driving, which was fine, but he got a new car, so I got mine back. Now, if I want some pretzels, I can go to the store and get pretzels. It has been such a relief. It’s crazy when you do not have that independence. People take that for granted, being able to get in their car and go somewhere. I will never take that for granted again.
Writing a love letter to my body and coping with weight gain
I wrote a poem about my body, which was therapeutic to write down my emotions on paper. It helped to read it out loud. I hope it resonates with other people.
The cancer medications I have been on, especially steroids for inflammation and pain, did their job, which was great, but the biggest side effect was weight gain. I gained about 30 pounds in total, which is a lot considering I’m 5-foot-9 and usually weigh about 150 pounds. The jump to 180 pounds was a lot for my frame.
I never had weight troubles my whole life. I felt I had a good athletic build and a pretty normal-looking body. I did not worry about my weight until I gained 30 pounds. It was not overnight, but it was a slow increase. It felt like every time I went into my cancer center and they weighed me, I gained another five pounds. It was so frustrating.
I wanted to write this poem as a tribute to my body. Even though my body looks different now, it is not always going to look this way. I am going to lose the weight; it is just going to take time. I will lose it eventually. Bodies are malleable. They bounce back.
I wanted to honor my body for keeping me alive. Maybe I gained weight, but it kept me alive. It survived all these things I went through in the hospital. I went into sepsis. I almost died, yet my body still bounced back. It endured a lot of trauma, and I am still here.
Writing it was a way of getting my emotions out and processing what I had been through. That goes for any journaling. It’s a way to get things out. I sometimes need that release of emotions to fully process everything.
How targeted therapy has given me new hope and my message to others
Targeted therapy has definitely given me a new sense of hope. There are a lot of great things that can come from cancer research. The research is always evolving. They are always coming out with new things, new trials, and new ways of treating cancer.
Funding for cancer research is so important. It has given me a lot of hope. I feel very optimistic. I have seen a lot of good reporting on the statistics and data from the specific drug I am on. The prognosis of my disease has very much improved. I have a better outlook on what is to come, and hopefully, I will live for a long time on this targeted therapy. I’m grateful that they found the ALK-positive biomarker. Biomarker testing is so imperative.
My message for others would be not lose hope. Things are always evolving with cancer research. There may not be an option for you today, but give it time and maybe there will be something approved that can help you then. Do not lose hope. There is something out there that can help.
Living with the uncertainty of cancer and rolling with the punches
It never ceases to amaze me how quickly things with cancer can change. That is the hardest part. There are a lot of surprises with cancer at every turn. For me, it’s about not expecting anything and just rolling with the punches. Hopefully, that method will keep me alive for a long time.
Symptoms: Pelvic pain and discomfort, bladder issues related to pelvic tumors, incontinence, pain in the lower back and hip Treatments: Chemotherapy, immunotherapy, radiation therapy, targeted therapy (lorlatinib)
The Reality of Platinum Resistance: Alicia’s Ovarian Cancer Story Framed by a Medical Expert
Alicia’s stage 3C ovarian cancer experience began during what should have been a season of joy. She had a thriving hairstyling career and a roller derby community, and had recently gotten married. Around the time of her wedding and honeymoon, her period stopped for a year and then returned as nearly two years of daily bleeding, sometimes so heavy she had to use adult diapers that she had to change every five minutes.
Edited by: Katrina Villareal
She also developed high blood pressure, a persistent cough, bloating, and lower back pain, but a normal Pap smear and the timing of midlife led her to assume that it was perimenopause.
To help place Alicia’s experience in medical context, we spoke with Dr. Ursula Matulonis, chief of the Division of Gynecologic Oncology at Dana-Farber Cancer Institute in Boston. According to Dr. Matulonis, Alicia’s experience is unfortunately not unusual. She explains that most high-grade serous ovarian cancers present at stage 3 or 4, often starting in the fallopian tube and spreading silently through the abdomen.
It took a full year before Alicia found a specialist. She tearfully asks herself now, “Why didn’t I think it was cancer?” The specialist initially suspected endometriosis after seeing uterine polyps. A procedure to remove them gave her just 24 hours before the bleeding resumed. Multiple emergency visits followed, and the biopsy came back as precancerous, not cancer. Everything changed when her doctor reviewed her scans and told her, “You have cancer. You have two cancers,” then arranged for her to be admitted that day for emergency surgery the next morning. Alicia was diagnosed with stage 3C ovarian cancer and stage 1 uterine cancer.
During surgery, Alicia’s team found what the surgeon called a “hot mess”: an enlarged, inflamed, partly decaying uterus and large ovarian cysts that required an open incision and a total hysterectomy. After a week and a half in the hospital, she returned home to recover, then had a port placed and started chemotherapy. At first, her stage 3C ovarian cancer experience seemed to turn a corner. Her tumors shrank, her numbers looked good, and she rang the bell at her last infusion. Within two weeks, however, the cancer was back —- and further testing showed that her disease was platinum-resistant.
Losing so much time to appointments meant she eventually lost her job and her insurance, forcing her to search for a center that could treat her through a charity program. She found that at Moffitt Cancer Center in Florida, where a leading OB-GYN oncologist reviewed her records, retested her samples, and explained that her cancer is rare, hormone-based, and not genetic, making treatments more limited and clinical trials harder to access, especially as a dual cancer patient with a new metastatic mass in her vaginal cuff. Even as the focus shifts to keeping the cancer stable and planning radiation, Alicia leans on her Buddhist faith and her wife for support.
Dr. Matulonis underscores how crucial it is to understand tumor histology and genetics such as BRCA status and markers like HER2 and folate receptor alpha (FRα) used to guide treatment decisions. She describes a rapidly evolving landscape of drugs and clinical trials and emphasizes that hope rests not in false promises, but in accurate information, shared decision-making, and matching the right option to the right patient at the right time.
Watch the video and read the interview transcripts below to know more:
Heavy, persistent bleeding was attributed to perimenopause despite a normal Pap smear, highlighting how gynecologic cancers can be masked by common midlife symptoms.
It took a year, multiple hospital visits, and a “precancerous” biopsy before she learned she had two cancers and needed emergency surgery the next day.
After surgery and chemotherapy that initially appeared successful, the cancer returned within weeks as platinum-resistant disease, limiting treatment and clinical trial options.
Transferring to a specialized cancer center provided access to financial assistance, additional treatment options, and clearer guidance about her diagnosis.
Persistent or worsening symptoms deserve continued attention, even when early tests are normal or labeled “precancerous.”
Finding emotional or spiritual grounding, such as Alicia’s Buddhist practice, can help patients navigate repeated setbacks and uncertainty.
Dr. Ursula Matulonis emphasizes that alongside resilience, evolving science and individualized care offer meaningful pathways forward for many patients facing ovarian cancer.
No menstrual cycle for one year, followed by almost two years of daily bleeding
Large blood clots
High blood pressure
Random cough
Bloating
Treatments:
Surgery: total hysterectomy
Chemotherapy
Radiation therapy (planned)
Thank you to Corcept Therapeutics 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.
I thought I was perimenopausal because I was going a year without a cycle. Then all of a sudden, I had a cycle for almost two years straight.
Alicia N., Stage 3C Ovarian Cancer and Stage 1 Uterine Cancer Patient
Alicia’s ovarian cancer and uterine cancer story
Life before cancer and personal background
Hi, my name is Alicia, and I have stage 3C ovarian cancer and stage 1 uterine cancer.
I was a hairstylist before all of this. I was also on a roller derby team. I was active. I love animals. I have two dogs and two cats. I grew up on a farm. I have a beautiful wife, and we’ve been married for three years. I was also an Army brat, so that was a big thing because I moved all over the place. I had a Japanese grandmother, so I have my Japanese background.
Early symptoms around the time of my wedding and honeymoon
I had just met my wife. I was into my career and had started having an awesome clientele. I was on a roller derby team, getting active, about to start bouting, and everything. Then I met my wife, and we ended up getting married. That’s when my symptoms were the heaviest, when the wedding happened.
I thought I was perimenopausal because I was going a year without a cycle. Then all of a sudden, I had a cycle for almost two years straight, every day, not even 24 hours of being free of it. Then I started having more symptoms added on to that.
What concerned me was that during my honeymoon, I graduated to adult diapers and was going through those every five minutes.
Alicia N., Stage 3C Ovarian Cancer and Stage 1 Uterine Cancer Patient
Perimenopause assumptions and worrying symptoms
I thought it was due to perimenopause. The symptoms that came along with it got me worried because, all of a sudden, I had high blood pressure, which I had never had. I had this random cough. The only time I had a cough like that was when I used to get a bronchial cough during the winter, so I thought it was something similar. Then I started getting bloated and had lower back pain. The lower back pain I thought was due to work, because I stood all day long behind a chair.
I had my Pap smear done, and it came back normal. Around that time, I was questioning it. What concerned me was that during my honeymoon, I graduated to adult diapers and was going through those every five minutes. My wife was like, “Something’s not right. We have to get you checked.”
Honeymoon bleeding crisis and search for a specialist
We went to Siesta Key for the week. During that week, it was good — no bleeding. Then all of a sudden, on the last day, it kicked up. I had to get adult diapers plus overnight pads. It was not looking good. The clots were coming in handfuls, which was what was concerning. I started having pain as well, but I thought it was normal period cramps.
For the rest of the day, we couldn’t do anything. The good thing was that we were leaving the next day. I was concerned because I was like, “Okay, what’s going on?” That’s when I started Googling our local area for specialists, because I knew I needed to have somebody more than just a regular doctor.
Thinking back to before I was diagnosed, I asked myself, ‘Why didn’t I think it was cancer?’
Alicia N., Stage 3C Ovarian Cancer and Stage 1 Uterine Cancer Patient
Not considering cancer at first
I just thought it was a hormonal issue. Cancer never crossed my mind. I thought it was probably severe menopause, something of that nature. The weird thing was that I wasn’t getting tired like you would think I would be, because of how much I was bleeding. It was the clotting that was causing me to worry, because I never had that problem. I never put two and two together — the symptoms I was having, along with the bleeding.
Emotional reflection on delayed suspicion
I never thought I would tear up, because I’ve shared it so many times. But thinking back to before I was diagnosed, I asked myself, “Why didn’t I think it was cancer?” You think you get over it after telling your story multiple times, but you never do.
Delay in finding a specialist and ongoing bleeding
It took me a year to find a specialist. I don’t know why it took me so long. In my head, after that day, it was to see if it would go any longer, to see how the rest of the week would go — and it ended up being how the rest of the year would go — because I wanted to make sure I had something to tell the doctors.
At that time, I stopped doing roller derby. I just went to work and went home. After that year, I ended up finding a specialist. When I did, it was weird because they first thought I had endometriosis. I had a regular cycle all my life, so I never had endometriosis. They did a pelvic exam and saw polyps in my uterus, and that’s where it came up as being questionable for endometriosis.
On the day of my appointment, I went in to get my results to find out that I had two cancers and that I was getting admitted to the hospital to have emergency surgery the next day.
Alicia N., Stage 3C Ovarian Cancer and Stage 1 Uterine Cancer Patient
Polyp removal, ER visits, and precancerous results
They did a procedure to remove the polyps, which was supposed to stop the bleeding. I got 24 hours of no bleeding. After that, they said, “Okay, go to the hospital.” I probably had three to four hospital visits before I got an oncology referral.
The results from the biopsy of the polyps came back precancerous. It didn’t even come back as cancer. The hospital visits and finally seeing my doctor took about a month.
Emergency diagnosis of two cancers
When I saw her, she looked at my scans and said, “Yeah, you have cancer.” I was like, “What?” She said, “You have two cancers at that.” I was like, “Oh my gosh. Are you serious?”
She said, “Yeah, you have two cancers. It will take your insurance two weeks to approve the surgery, so I’m going to fit you into my schedule for tomorrow for emergency surgery. I’m going to admit you today so we can do the emergency surgery, because you need this taken out.”
I didn’t have time to process, because everything went so fast. On the day of my appointment, I went in to get my results to find out that I had two cancers and that I was getting admitted to the hospital to have emergency surgery the next day.
Alicia’s story continues below.
Ursula Matulonis, MD explains ovarian cancer in detail
Professional role and path into oncology
I’m Ursula Matulonis. My official title is chief of the Division of Gynecologic Oncology at the Dana-Farber Cancer Institute in Boston, Massachusetts.
I became interested in oncology when I rotated on an oncology ward while in medical school. I saw and understood the seriousness of oncologic diagnoses, which is what drew me into oncology.
Initially, I wanted to be a bone marrow transplant physician and take care of folks with acute leukemia. But when I started my fellowship at Dana-Farber, I had an eye‑opening experience with the world of solid tumors. At that time, there were very few individuals seeing patients with gynecologic cancers, so I moved, developed our program, and eventually joined the division at Dana‑Farber. It’s been a career‑long interest in oncology and, since fellowship, in gynecologic cancers.
I saw and understood the seriousness of oncologic diagnoses, which is what drew me into oncology.
Dr. Ursula Matulonis, Gynecologic Oncologist
How common is ovarian cancer and what makes it unique
It depends on how you consider rare because there are specific definitions, but there are about 21,000 cases of ovarian cancer in the United States per year. That number has been dropping, likely for several reasons: individuals pulling back on the use of hormone replacement therapy and better identification of individuals at higher risk of developing ovarian cancer, such as germline BRCA1 or BRCA2 mutation carriers who can undergo risk‑reducing surgery. That annual number now seems to have stabilized to around 20,000 to 21,000 cases.
There are many unique aspects of epithelial ovarian cancer. We used to think of it as coming from the surface of the ovary, but in a substantial number of cases, it probably comes from the fallopian tube, specifically the fimbria. In serous tubal intraepithelial carcinoma (STIC), a tiny cancer starts in the fallopian tube, and because the ovary is a neighboring organ, the cancer cells spread to the ovary and disseminate easily through the abdominal cavity. As a result, most patients with high‑grade serous ovarian cancer, which is the most common histology, present with stage 3 or 4 disease, meaning the cancer can extend from the pelvis all the way to the upper abdomen or even outside the abdomen into areas like the chest or supraclavicular lymph nodes.
When someone comes in with a new diagnosis of ovarian cancer, we take into account the stage of the cancer, the histology, and whether or not that patient can undergo upfront cytoreductive surgery.
Dr. Ursula Matulonis, Gynecologic Oncologist
The molecular aspects are also unique. High‑grade serous cancers often have homologous recombination deficiency (HRD), an abnormality in DNA repair that makes them particularly sensitive to platinum drugs. Tumors with a BRCA mutation — whether inherited (germline) or only in the tumor (somatic) — are especially sensitive to platinum. On the other hand, to date, high‑grade serous ovarian cancer has shown low sensitivity to immunotherapy, in part because it tends to have a low tumor mutational burden and is immunologically “cold,” so checkpoint inhibitors have had limited activity.
It’s also important to remember that other histologies — such as low‑grade serous, clear cell, low‑grade endometrioid, high‑grade endometrioid, mucinous tumors, and carcinosarcomas — have distinct biologies and genetic makeups. For example, low‑grade serous ovarian cancer can be very sensitive to hormonal therapies, especially aromatase inhibitors, while clear cell and mucinous tumors tend to be less sensitive to platinum.
Alicia’s Radical hysterectomy and recovery
I was scheduled for a full hysterectomy. She was trying to do it laparoscopically, but she couldn’t because my uterus was so enlarged and inflamed. She said I had a hot mess in there for her, so they had to make an old-school incision. Part of my uterus was decaying. My left ovary was 6 to 7 centimeters big, and my right ovary was 10 centimeters. The cyst on the ovaries was 10 centimeters. She had to scoop out as much cancer as she could.
After that, I stayed in the hospital for a week and a half to recover because they wanted to make sure that everything was okay. At that time, I was processing it a little bit more, and then it was, “Okay, after you get out of surgery, you will meet your oncologist in your town.” I was 45 minutes to an hour away from home, and they found an oncologist in my town to do treatment. After that surgery, I had to get my port surgery, which was about six weeks after my recovery. I started treatment the day after I got my port.
Treatment was going well… Everything was looking good... After a week or two, the cancer was back… They found out I was platinum-resistant.
Alicia N., Stage 3C Ovarian Cancer and Stage 1 Uterine Cancer Patient
First-line chemotherapy and initial response
The first chemo was doing well. I had rare side effects. I always have to have the rarest, I guess — go big or go home. I was tired, had a lot of bone pain, and a lot of neuropathy. I lost my hair, but other than that, I was fine. Treatment was going well, and everything was starting to shrink. My numbers were good. Everything was looking good.
When we got to my last treatment, they were like, “Okay, you can ring the bell if you want to, because your numbers are down to normal and everything is looking good.” I rang the bell. After a week or two, the cancer was back. When they looked at it and redid the genetic testing, that’s when they found out I was platinum-resistant.
Dr. Matulonis explains diagnosis, staging, and upfront treatment strategy
When someone comes in with a new diagnosis of ovarian cancer, we take into account the stage of the cancer, the histology, and whether or not that patient can undergo upfront cytoreductive surgery (CRS). If a patient is not feeling well, has a lot of ascites (fluid in the abdomen), fluid around the lungs, or other factors that make upfront surgery unsafe, we start with a biopsy and then use neoadjuvant chemotherapy — chemotherapy first. Typically, that means three cycles of chemotherapy, then reevaluation and surgery if feasible, followed by additional chemotherapy to complete about six total cycles.
When added to chemotherapy, bevacizumab can enhance responsiveness and sometimes keep cancer in remission longer, but it has its own side effects.
Dr. Ursula Matulonis, Gynecologic Oncologist
For high‑grade cancers like high‑grade serous, clear cell, high‑grade endometrioid tumors, and carcinosarcomas, the backbone chemotherapy is carboplatin and paclitaxel. Standard of care remains carboplatin plus paclitaxel. Aromatase inhibitors are being tested as frontline therapy for low‑grade serous ovarian cancer, which asks whether hormonal therapy might replace upfront chemotherapy in that subtype, but this is not the current standard of care.
We can also add bevacizumab to carboplatin and paclitaxel. Bevacizumab is a monoclonal antibody that targets vascular endothelial growth factor (VEGF). When added to chemotherapy, bevacizumab can enhance responsiveness and sometimes keep cancer in remission longer, but it has its own side effects, such as hypertension, potential kidney damage, wound‑healing problems, and voice changes. It does not appear to improve overall survival but can prolong the time the cancer stays in remission.
Molecular testing and PARP inhibitors
Alongside starting chemotherapy, I order molecular tests so we understand the tumor while we’re treating it. I typically do next‑generation sequencing (NGS) on the tumor to understand the genetic changes, and I also order homologous recombination deficiency (HRD) testing. HRD testing helps predict how sensitive the cancer will be to platinum and to PARP inhibitors.
There are two main HRD states: HRD (homologous recombination deficient), where PARP inhibitors can be considered, and HRP (homologous recombination proficient), where DNA repair is relatively normal, and PARP inhibitors used as maintenance is currently not allowed under FDA guidelines. In the setting of a BRCA mutation, PARP inhibitors can have a significant positive impact on outcomes and are an important part of maintenance strategies.
I also routinely order HER2 testing and folate receptor alpha (FOLR1) testing by pathology. This is important because if a patient goes into remission and then relapses — particularly with a short remission — we may use these markers to choose antibody-drug conjugates (ADCs) or other targeted therapies in the recurrent setting.
Even in platinum‑resistant settings, after some time off, reusing platinum can sometimes be effective, as several trials have shown improved responses when platinum is reintroduced after a break.
Dr. Ursula Matulonis, Gynecologic Oncologist
How Alicia learned about platinum resistance and impact on her work
He told me that it’s the type of cancer I had in my body. Sometimes it happens to patients where it resists, and we can no longer use that treatment on the cancer because it will not work anymore.
I had been working, but I ended up having to stop. I was losing so much time because of my appointments that I couldn’t work the hours to keep my insurance, so I lost my insurance. I had to find another center to work with me, because the center I was at did not have a charity program, so I couldn’t do a payment plan or anything like that.
Dr. Matulonis on platinum sensitivity, platinum resistance, and reuse of platinum
As treatment progresses, the concepts of platinum‑sensitive and platinum‑resistant recurrence become important. The platinum‑free interval is the time from the last dose of platinum (like carboplatin) to the first documented recurrence, whether that’s a rising CA‑125 or symptomatic disease, like ascites or bowel obstruction.
Broadly, platinum‑sensitive recurrence means a longer interval off platinum (classically more than six months) and is typically treated by reusing platinum. Platinum‑resistant recurrence refers to recurrence within about six months of the last platinum dose, and platinum‑refractory means the cancer grows while the patient is still on platinum. In platinum‑refractory disease, I do not reuse platinum; we need a different strategy.
That said, even in platinum‑resistant settings, after some time off, reusing platinum can sometimes be effective, as several trials have shown improved responses when platinum is reintroduced after a break.
I still had hope. I knew I was in the right place because everybody talks so highly of Moffitt.
Alicia N., Stage 3C Ovarian Cancer and Stage 1 Uterine Cancer Patient
Transferring to Moffitt allowed Alicia to regain hope
I found one of the best cancer centers in Florida: Moffitt Cancer Center. They picked me up. I was able to transfer to them. I asked my main oncologist, “Can you transfer me?” and they did. I was able to get a charity program with them, and I got a new oncologist there. That’s when she went through my records and explained again about the platinum resistance and introduced a new chemotherapy regimen to me.
I still had hope. I knew I was in the right place because everybody talks so highly of Moffitt. I knew they were going to help me find something to take care of my cancer. I was like, “Okay, let’s do everything we can, because I want to get back to at least a normal life.”
Trusting a new oncologist and treatment options
I was leery, but her nurse practitioner told me that she was one of the top OB-GYN oncologists in the center, and she was also in charge of trials. Going to a new place and a new doctor, you’re always going to be kind of leery, because you have to explain everything all over again, tell them about side effects that you experienced, and things like that. But she gave me the option to either continue with the chemo or not if I didn’t want to, or I could have gone to another place.
I had options regardless, and she listened to everything I was saying. I put it in her hands because she knows what she’s doing. I asked, “What’s the best thing that you can do for me?” She took my samples again to see what would actually work and what wouldn’t work, and that’s when the new drug came into play.
My cancer is rare. It’s hormone-based and not genetic… I have to be careful not to run through my options… There are not a lot of them out there for the type I have.
Alicia N., Stage 3C Ovarian Cancer and Stage 1 Uterine Cancer Patient
What are Antibody-drug conjugates and folate receptor alpha
Antibody-drug conjugates (ADCs) are an important class of newer therapies. These drugs combine an antibody that targets a surface protein on the cancer cell with a potent chemotherapy payload attached to it. Two key targets we focus on are HER2 and folate receptor alpha (FOLR1).
For FOLR1, one ADC is approved for platinum‑resistant ovarian cancer in patients whose tumors have at least 75% of cells staining strongly positive for folate receptor alpha. In a pivotal trial, this FOLR1‑targeted ADC, compared with standard chemotherapy, showed the first survival benefit in the platinum‑resistant setting — improving both progression‑free survival and overall survival. That represents a major step forward.
Not all tumors meet that high FOLR1 threshold, so other ADCs are being developed that can work at lower levels of expression or target different proteins, such as HER2 or CD6. Some ADCs are more biomarker‑agnostic, which means they don’t require a very high level of the target to show activity.
When planning treatment, we think about which ADC makes sense based on markers and prior lines of therapy. For example, the FOLR1 ADC approval is written for up to three prior lines of treatment with high FOLR1 expression, because beyond that, responses declined in early studies. In contrast, some HER2‑targeted ADC trials in gynecologic cancers did not limit the number of prior lines and still saw activity across a broad range of prior treatments.
Weekly paclitaxel plus bevacizumab is one of our most active regimens in the platinum‑resistant setting and can keep cancer in remission for months.
Dr. Ursula Matulonis, Gynecologic Oncologist
Alicia on a new metastasis, her faith, and hope for the future
Becoming platinum resistant again and having limited options
When I got there, this was far into my year of dealing with all of this. I’ve been at Moffitt for a year now. By August 2026, it will be three years of dealing with this. I actually became resistant to another drug as well, because it did not work. It worked in the beginning, but towards the end, it was not showing improvement. A new drug was the only thing that was showing to keep me stable.
At this point, I had already gone through two types of chemo regimens that are the strongest for ovarian cancer. For me to be resistant to both is one of the rare cases. Once again, she was able to explain more of why my cancer behaves the way it does. My cancer is rare. It’s hormone-based and not genetic. When it comes to hormone-based ovarian cancer, it’s harder to find treatments, and when I do have treatments, they’re very minimal. It’s one of those things where I have to be careful not to run through my options. At the same time, she has been keeping track of trials, but there are not a lot of them out there for the type I have.
New metastatic mass and barriers to clinical trials
I found out that I have a metastatic mass that appeared, so that makes it a little bit harder. I also found out that because I’m a dual cancer patient, it’s harder to find a trial that will accept me for ovarian cancer. Even though my uterine cancer is not there or not popping up, they only want patients with one cancer.
With this new mass that popped up, the next step is radiation therapy for my vaginal cuff. The good thing is I’m still stage 3, but now it’s metastatic. (According to the National Cancer Institute, cancer that spreads from where it started to a distant part of the body is called metastatic cancer. For many types of cancer, it is also called stage 4 cancer. The process by which cancer cells spread to other parts of the body is called metastasis.)
My advice is not to give in to negativity, which is the hardest thing, and to be as strong as you can, even when you feel that you’re not.
Alicia N., Stage 3C Ovarian Cancer and Stage 1 Uterine Cancer Patient
Coping, faith, and Buddhist perspective
It’s tough because you feel that there’s an end or that things are starting to clear, and then something new pops up. Because I’m Buddhist, we look at it as an obstacle to overcome and not to let it take over. Our saying is “turn poison into medicine,” so you’re taking your suffering, which is poison, and you’re turning it into happiness and better results.
I have that to help keep me sane through all this, because if not, I don’t know where I would be. My wife is my rock for sure.
Advice to others and mental health
My advice is not to give in to negativity, which is the hardest thing, and to be as strong as you can, even when you feel that you’re not. This takes you to a whole other mental level, whether you have mental health issues or not. Know that you can live a long life, but you have to have the right mindset for it and want to live.
Ovarian Cancer Resources
Illuminate Recurrence – Education site focused on platinum-resistant ovarian cancer, with plain-language info on recurrence, questions to bring to your care team, and a resource library.
OCRA (Ovarian Cancer Research Alliance) – Offers free patient and family support services, including support groups/series, peer mentoring, and practical tools like find-a-doctor.
Imerman Angels – Provides free, one-on-one peer mentoring and honest, personal support by matching patients and caregivers with someone who has been through a similar experience.
Patient Advocate Foundation – PAF offers free, one-on-one assistance to help patients work through real-life issues like insurance denials, access to care, and cost barriers.
“Office Hours” with Dr. Matulonis: Side Effects, Scans, and Smarter Treatment Decisions
In the remainder of our conversation, Dr. Matulonis kindly expands on the science and strategy behind ovarian cancer care, from managing side effects and understanding platinum resistance to evaluating clinical trials and long-term planning.
Managing side effects, neuropathy, and bevacizumab risks
One of the most significant chronic side effects in ovarian cancer treatment is peripheral neuropathy, which is numbness and tingling in the fingertips and toes, often from taxanes, like paclitaxel. Sometimes neuropathy improves after initial chemotherapy, but it can also be long‑lasting. When reusing paclitaxel, even weekly, I check carefully that neuropathy is not worsening to the point of affecting function.
For bevacizumab, we must consider medical comorbidities. Patients with underlying heart disease, low left‑ventricular ejection fraction, or chronic kidney disease (CKD) may be at higher risk for cardiac or renal complications. Bevacizumab can worsen blood pressure and kidney function, and can impair wound healing. It is contraindicated in the setting of an active small bowel obstruction, because earlier trials showed cases of bowel perforation in platinum‑resistant ovarian cancer patients with obstruction.
Weekly paclitaxel plus bevacizumab is one of our most active regimens in the platinum‑resistant setting and can keep cancer in remission for months, but it requires weekly visits, causes hair loss and neuropathy, and adds bevacizumab‑related toxicities. These practical and quality‑of‑life issues are part of every treatment discussion.
Cure, remission, and long‑term planning
When starting upfront carboplatin‑paclitaxel chemotherapy, the purpose we write on the consent form is curative. Patients can be cured of ovarian cancer, especially those with BRCA mutations or other high‑risk mutations that confer enhanced sensitivity to platinum. Unfortunately, a majority of patients do develop recurrent disease later.
In recurrence, there are more choices. We look at histology, the number of prior lines, HRD/BRCA status, HER2 and FOLR1 expression, and other genetic alterations, such as cyclin E1 amplification or KRAS mutations, especially in low‑grade serous cancers. We also consider prior toxicities and what the patient is willing and able to tolerate in terms of logistics and quality of life.
The science and clinical trials are hugely important for discovering new vulnerabilities and new treatments.
Dr. Ursula Matulonis, Gynecologic Oncologist
Clinical trials, immunotherapy, and research progress
Clinical trials are a critical part of progress, but they are not for everyone and should never be forced. I present all reasonable options, including trials, but it’s ultimately the patient’s decision.
As of now, immunotherapy with checkpoint inhibitors has had limited benefit in most ovarian cancers because of low tumor mutational burden and the immunologically cold nature of high‑grade serous disease. However, newer immunotherapy approaches are under study, including bispecific antibodies that target two proteins at once, CAR T‑cell and CAR NK (natural killer) cell therapies, and combinations of weekly paclitaxel with experimental immunotherapies.
Antibody-drug conjugates are also being tested earlier in the disease course, including as maintenance after platinum‑sensitive recurrence and, in some trials, in frontline settings alongside or following carboplatin-paclitaxel. Research into DNA repair pathways continues as we look for new ways to target homologous recombination defects beyond PARP inhibitors.
We are making progress, but there is still a long way to go. The science and clinical trials are hugely important for discovering new vulnerabilities and new treatments.
Communicating scan results and tailoring treatment
Delivering scan results, especially bad news, never gets easier. I always have to prepare myself before walking into the room, because patients often look at my expression to gauge what the scans show. With electronic medical records, scan results are now released directly to patients by law, so many patients have already read them before we talk. They may not interpret all the details, but they usually know if something is good or bad.
I review the scans myself, pull up the images, and, with the patient’s permission, turn the screen around to show exactly what is happening and compare current and prior scans. Sometimes imaging underestimates tumor burden, especially when cancer spreads as a thin layer over intestinal surfaces that CT cannot easily see. Symptoms — such as early satiety, nausea, vomiting, or gastrointestinal issues — can reveal more than the scan alone.
We integrate imaging, symptoms, tumor markers like CA‑125, and patient preferences to decide whether to change treatment, continue and re‑scan later, or shift focus to symptom control. We also consider clinical trial options, travel distance, and whether virtual visits are feasible, especially for patients who live far from Boston.
My job is to come up with treatment plans that address the molecular aspects of the cancer, avoid worsening preexisting side effects, and respect the patient’s wishes and life circumstances.
Dr. Ursula Matulonis, Gynecologic Oncologist
Role of specialists, community oncologists, and virtual care
General oncologists take care of many different cancers, which makes it difficult to keep up with the details of each tumor type, the newest research, and targeted therapies. There is a huge amount of information — press releases, abstracts, papers — and even subspecialists cannot attend every meeting. That’s why working with a specialist in gynecologic oncology is important when possible, especially for complex cases or when considering novel therapies.
Telemedicine has helped. I hold licenses in multiple states, including Massachusetts, Maine, and Rhode Island, so I can see patients virtually and advise them or their local oncologists on options, including clinical trials. Whether a patient wants to travel several hours for a trial is their choice; my role is to present accurate information and realistic expectations.
Balancing efficacy, toxicity, and patient priorities
My job is to come up with treatment plans that address the molecular aspects of the cancer, avoid worsening preexisting side effects, and respect the patient’s wishes and life circumstances. It is exciting to see medications that can relieve a small bowel obstruction from platinum‑resistant disease, reduce pain, and improve quality of life.
For any given patient, we think across classes of drugs:
Chemotherapy (platinum and non‑platinum)
Bevacizumab (with careful attention to contraindications)
Antibody-drug conjugates (HER2, FOLR1, others)
Hormonal therapies for estrogen receptor-positive tumors (especially low‑grade serous)
Targeted agents for specific mutations (e.g., KRAS, cyclin E1 amplification)
Immunotherapy or bispecific antibodies in trials
We ask: What is the goal — cure, long remission, or symptom control? What side effects are acceptable? How far can the patient travel? Are they interested in a clinical trial? There are many options now, which are very different from five to 10 years ago, but the art is matching the right option to the right patient at the right time.
Patients should be offered options, never pressured, and supported whether they choose standard care, a clinical trial, or a more comfort‑focused approach.
Dr. Ursula Matulonis, Gynecologic Oncologist
Hope, information, and shared decision‑making
Hope is always important. I understand that if someone is not feeling well, it can be hard to feel hopeful, but doing some research, understanding their cancer, and having open conversations about new therapies can help. Clinical trials of immunotherapies, ADCs, DNA repair-targeting drugs, and other approaches are ongoing and may expand options further.
Scientists are discovering new vulnerabilities in ovarian cancer, especially in DNA repair pathways, while clinical researchers test how best to use new and existing drugs. Patients should be offered options, never pressured, and supported whether they choose standard care, a clinical trial, or a more comfort‑focused approach.
Thank you to Corcept Therapeutics 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.
Trust Your Body, Trust Your Care Team: How Aleeshia Faced Rare Burkitt Lymphoma at 33
Burkitt lymphoma and severe fatigue showed up in Aleeshia’s life long before anyone said the word “cancer.” Living in Milan but rooted in a multicultural family that spans Vancouver, Montreal, Egypt, and Italy, Aleeshia had always built a life around travel, food, and making every new place feel like home. When a strange, unrelenting fatigue settled in, she assumed it was stress, hormones, or lingering effects of polycystic ovary syndrome (PCOS), not an aggressive stage 4B blood cancer quietly growing in her abdomen and bone marrow.
Over a few weeks, subtle symptoms escalated into a cascade of red flags: deep bone-like shoulder pain that cortisone could not touch, severe ear pain, bloating, early fullness, nausea, and pelvic pain. One morning, the pain was so intense that she crawled from the bathroom to her bed. After an ambulance ride and emergency surgery came a shocking discovery: a 15-centimeter mass on her ovary, massive internal bleeding, and the first mention that this might be lymphoma.
While she processed the loss of her left ovary and the fear for her fertility, the full diagnosis came in stages: large B‑cell aggressive lymphoma, then Burkitt lymphoma, and finally, stage 4B disease with bone marrow involvement. Hospitalized, unable to walk on her own, and rapidly getting sicker, she started intense, inpatient chemotherapy and immunotherapy almost immediately. The protocol demanded month‑long hospital stays, repeated infections, brutal nausea, and near-constant IV lines including a catheter in her neck when a PICC line failed.
Amid the physical toll, the emotional weight was just as heavy. Aleeshia grieved the possibility that menopause and infertility might outlast treatment, and she weathered moments of rage and despair where she wanted to rip out the IVs and go home. Her hematologist‑oncologist and a hospital psychologist became anchors, normalizing her feelings and giving her space to speak honestly. Supported by her parents and her husband, she kept returning to one grounding belief: trust in her care team and in her body’s ability to heal.
At the end of November, she heard the words “no evidence of disease.” Survivorship now means scanxiety, new physical limits, and ongoing questions about fertility, but it also brought her back to a more spontaneous, authentic self — someone who no longer needs a perfect plan to feel like her life is meaningful.
Watch Aleeshia’s story or read the interview transcript below to know more about her story:
Fatigue that doesn’t improve with rest, deep bone-like pain, sudden changes in digestion, or pelvic pain can be meaningful signals that deserve thorough medical follow-up
A rare, aggressive cancer like stage 4B Burkitt lymphoma can be extremely chemosensitive
It is never a patient’s fault when treatment causes harsh side effects or long-term impacts; the burden belongs to the disease and the intensity of the therapy
Honest, compassionate communication can ground patients in moments of shock and fear.
Aleeshia describes a powerful transformation: from feeling trapped and powerless in the hospital to reconnecting with her spontaneous, joyful nature and considering advocacy around psychological care in cancer treatment
Name: Aleeshia T.
Age at Diagnosis:
33
Diagnoses:
Burkitt Lymphoma
Staging:
Stage 4B
Symptoms:
Severe fatigue
Deep shoulder pain
Ear pain with inflammation
Abdominal and pelvic pain
Bloating
Early fullness
Nausea
Difficulty eating
Inability to urinate despite feeling an urgent need
Internal bleeding
Delayed period/bleeding
Intense whole‑body pain leading to collapse
Treatments:
Surgeries: emergency laparoscopic surgery with left ovary removal
Chemotherapy: R‑CODOX‑M/IVAC
Immunotherapy
Hormonal therapy (to protect the remaining ovary)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
My name is Aleeshia. I’m from Vancouver, Canada, but I live in Milan, Italy, and I was diagnosed with stage 4B Burkitt lymphoma in May 2025.
I am quite passionate about traveling. I have been traveling my whole life. My dad worked in the airline industry for a big chunk of my childhood. My sister is a flight attendant and I also work in the industry; I work for a tour operator. I come from a very multicultural family. My dad is Italian-Canadian. My mother is Egyptian-American. They grew up going to a lot of places as well and passed that down to my sister and me.
I love exploring new places, but what I like is getting to a place and making it feel like home in a way. I have not been to the most countries or done the most things in the world, but I have spent a significant amount of time in places that I have been interested in. It has been 10 years since I came to live in Italy and I have moved around a lot, which is not typical of a North American expat who comes to Italy. They usually pick one place and stay. I love it because you see a slice of life in other parts of the world and how people live. I love to connect with people in that way.
A couple of other hobbies or things that I am passionate about are food and cooking. I actually came to Italy to get my master’s degree in food studies. Hand in hand with traveling, I am interested in understanding why people eat what they eat, how it gets to their table, traditional family recipes, and that kind of stuff. I cook a lot. Whenever I am at my grandmother’s house in Montreal, I’m usually writing down her recipes, cooking, and taking pictures so that I can preserve all of that knowledge.
I also read a lot. My undergraduate degree is in English literature. When I am not somewhere else in the world, I am usually on my couch reading a good book.
When I First Noticed Something Was Wrong
The fatigue was probably the very first symptom. I did not have night sweats. I was not losing weight. For most lymphomas, the classic B symptoms are rapid or unexplained weight loss, night sweats, and fatigue. I think I only had fatigue. It was a strange sensation because I felt tired, but sleep and rest did not make the fatigue go away. It felt more like my energy was completely depleted, and the effort needed to do certain basic things was almost non-existent. But I did not feel unwell.
Those very first signs of fatigue and energy loss did not register with me as anything wrong besides something potentially stress-related or health-related, but not cancer. At the time, my husband and I were trying to get pregnant. I had received a PCOS diagnosis the year before, so I thought something was going on there. It did not at all register that it could be a tumor.
My Path to Diagnosis
After the trip, I came back, and almost the day after I landed, I had this pain in my left ear. I thought I had picked up a little ear infection or a sinus infection that had traveled to my ear or something. I went to a walk-in clinic near my house, and the doctor did an exam and said it was definitely severely inflamed. I remember her saying that the lymph nodes in the area were not swollen but that the nerves were swollen. She said it was probably an infection, gave me some antibiotics, and I went on my way.
About five days into taking these antibiotics, I felt so much worse than I did originally. I had a fever and bad stomachaches, and that sense of fatigue and zero energy made it difficult to get out of bed. I called my GP and said, “I need to see you today. I cannot work. I am ill.” In Italy, you need your doctor to give you a note to say that you are sick so that your sick days get paid out. She said she had about a half-hour gap and if I could come at that time. This was the second week of April, and I dragged myself over to her studio.
In that visit, she looked at my ear and said she did not think those antibiotics were the right ones for the ear infection, so she switched the antibiotics. Given that I had a fever and stomachaches, she did an abdominal exam as well and chalked up the pain in my abdominal area to a bit of gastrointestinal inflammation because of the antibiotics.
The other thing is that my period was two weeks late. This is important for when I get to the hospital. I had been doing regular at-home pregnancy tests, and they were negative. She said, “I will prescribe you a blood test, and we will rule that out,” because I had cramping in the pelvic area. She said, “I think it is mainly due to the antibiotics, but we will rule that out if you do this blood test and then we can go from there.”
I changed antibiotics. I never made it to doing the blood test she prescribed. Three days later, the pain in my ear was through the roof, to the point where I thought maybe I needed to go to the emergency room. My husband said, “Why don’t you just go see an ENT?” I made an appointment with an ENT at the hospital. At that visit, he said, “You do not have an infection. It is severely inflamed. I am going to give you cortisone.” That was a bit of a switch in my mind because I thought, “Okay, it is not an infection. Why would my ear just randomly get inflamed?” But we decided I would take the cortisone and see what happened.
When I started on this course of cortisone, my ear pain went away almost immediately, but then my shoulder started acting up. I had this severe, very deep pain in the point of my shoulder, and it felt like it was coming from inside my bone. Stretching and exercising did not help, and it was worse at night. That was very worrisome for me because I could not understand why I would have a pain that would worsen during certain parts of the day and be more tolerable at other parts of the day.
I was still taking cortisone, which is an extremely powerful anti-inflammatory, so I thought if it was muscular or if there was an inflammatory response causing this pain, the cortisone would be knocking it out. Instead, it was not. I was quite worried about that, but I said to myself, “You have not been well this whole month, and you still have not had your period.” So there was still this potential underlying hormonal diagnosis brewing in my mind and in my doctor’s mind.
What Happened Next
I said, “Okay, I will finish the cortisone and we will see what happens.” I did finish the cortisone, but I could not hold out on the pain. About five days into the cortisone, near the end of April, the pain in my arm was so bad one night that I woke up around 3 a.m. and said to my husband, “You have to take me to the emergency room. It is searing. I cannot think about anything else.” I was seeing white from how bad the pain in my shoulder was.
We went to the emergency room, and they treated it like it was just a muscular situation. They gave me an injection of a high-dose painkiller, and I was sent home. That helped with the shoulder situation, but I was still having cramps, abdominal pain, and just feeling unwell in my belly in general. It was difficult to eat, and I would get full quickly.
During that last week of April, I was also noticing that I was very bloated all the time and eating had become difficult. I would get full almost instantly and feel nauseous after I ate. It was a lot of things all at once and very quickly.
The Weekend That Changed Everything
I went to the ER twice. The first time my husband brought me in the middle of the night for my shoulder was a Friday. That weekend, my sister was in Milan on a layover. My mom had been here; she had come for Easter. The three of us went on a little day trip. I was feeling all right. I could still feel this pain in my shoulder, but overall, I was feeling okay. We were out all day long and had a great time.
On Sunday, my mom and I had plans to do another day trip to Como, and I woke up and said, “Mom, I do not feel good. Do you mind if we stay home?” She said, “Yeah, sure, no problem.” We ran a couple of errands but stayed home for the rest of the day, and I slept most of that afternoon. What changed on Sunday was that I started bleeding. I thought my period had finally arrived a month late, which resolved the potential pregnancy situation. But it did not ease up any of the pain I was feeling in my pelvic area, which was strange because I normally do not have cramps or a difficult period.
My mom was a bit worried because she said, “I had an ectopic pregnancy, and it can be life-threatening. Is it painful?” I said, “No, I think it is just weird cramps. It is not that bad. I just feel tired. I will be okay.” I slept off most of the afternoon on Sunday, then had dinner, and went to bed super early. Around 5 a.m. on Monday, I woke up in pain that I do not even know how to describe. I was not in my body. The pain was so overwhelming that I felt like I had zero control over my body. The pain was controlling everything.
I got out of bed, went to the bathroom, and fainted. I was only passed out for maybe five or six seconds, but it was 5 a.m. My husband and my mom were in a deep sleep. I thought, “Something is wrong.” I had to crawl back from the bathroom to my bedroom. I could not stand straight. I was bent at a 90-degree angle, almost on all fours, because the pain was so bad.
When I got into my bedroom, I do not 100% remember what happened. But I was lying on my back and must have been screaming in pain because my mom and my husband both woke up and immediately asked what was wrong. I remember my mom screaming, “Call 911. Call 911.”
I Needed Emergency Surgery
My husband called an ambulance, and they arrived within about five minutes — super quick. I was awake but not super lucid. The paramedic helped me get onto the gurney, and when they picked me up, there were about three liters of sweat on the ground below me. My body was in shock. I was super pale, sweating profusely, and in so much pain that I could not walk or straighten my legs. They rushed me to the hospital. Thankfully, we live within a 10-minute drive of where I was treated.
They took me straight into the ER, and everything was very rapid-fire. It felt like an episode of a medical TV show. There were three or four nurses around me, stripping me, putting in IVs, and asking me questions. The emergency room doctor immediately had an ultrasound out. They called an anesthesiologist. With the ultrasound, they started saying there was a lot of fluid in my abdomen, which was the concerning bit. They said it looked like there was a shadow over one of my ovaries, and they were asking me if I had my period, if I was pregnant, and all of that.
In between all the pain, I was trying to explain that I was about a month late, that I had taken pregnancy tests and they were negative, and that I had just started bleeding the day before. They said, “This could be an ectopic pregnancy.” Everything my mom had said the day before was there on the table. They said, “We are going to have to go in for emergency surgery. We will go laparoscopically. We have to figure out what is happening, but we are going to call in a gynecologist.”
They explained everything to me as it was happening. They had me sign a bunch of consent forms. The anesthesiologist was prepping me for surgery because they said I was going to be put fully under. My husband was there, also signing consent forms so that if things happened during the surgery, he could make decisions on my behalf. It was full on. Within 25 minutes of being admitted into the ER, they had me moving toward an operating table.
The gynecologic surgeon came down and introduced himself. He had been briefed on the situation. They passed me off from emergency medicine into emergency gynecology because this hospital has an emergency obstetrics department and there was a suspected ectopic pregnancy. In the midst of being rolled into the operating room, this doctor said, “Hello, my name is Leonardo. I am going to be operating on you,” and I said, “Okay.” I was pretty much out of it, and that is the last thing I remember because they administered the anesthesia, and I was out right away.
I woke up around seven hours later in intensive care. My doctor was the first person there again. I said, “Hello, Leonardo,” and he chuckled a little bit because I was just waking up after anesthesia, with no idea where I was or how much time had passed. My husband was also there, and I did not realize that pretty much the whole day had elapsed. When I woke up, I thought maybe half an hour had passed. I said to my husband, “What are you still doing here? Are you not supposed to be at work?” He said, “The whole day has gone by. You have been on the operating table for hours. I have been here the whole time.”
Then the doctor said to me, “We had to remove your left ovary. It had died. It was not an ectopic pregnancy. Instead, we found a 15-centimeter mass. I have sent it for a full histology. I think it might be lymphoma, but I do not know which kind. The mass had caused massive internal bleeding. You had lost nearly three liters of blood. We had to do transfusions during the surgery. For right now, all seems well. You are going to spend the night in intensive care, and then you will probably be in the hospital for a bit of post-op recovery.” That was the very first time cancer was mentioned as a potential diagnosis.
The Moment Everything Changed
I was processing what he was telling me in a certain sense, but I do not think the cancer part stuck. I remember being most concerned about my fertility. I think the only thing I asked him was, “Will I still be able to have babies? I only have one ovary left.” He said, “We cannot say that for sure right now.” He was good in his responses. He said, “I did not remove the other ovary because it looked healthy enough. Given your age and the fact that you and your husband were trying, I wanted to give you a chance if there would be one.”
I was focused on that, and I do not think the cancer element did much that day. I remember thinking, “They found this mass; that is scary,” but because they found it on my ovary, I thought it might be a cyst, maybe something related to PCOS. I think there was a part of my brain that thought lymphoma was a possibility, but that there were many other possibilities. I do not think I understood how accurate his presumed diagnosis could be in that moment.
He was very careful to say, “I think it might be this, but I am not giving you this diagnosis. We have sent the mass for histology. I know that it is not a sarcoma because during the operation, we ran a rapid biopsy. If it had been sarcoma, I would have performed a complete hysterectomy because it would have been too dangerous.” I clung to that: it was not sarcoma, not that “dangerous cancer,” so it might be something completely unrelated. I was more focused on the loss of my ovary and what that would mean for my future fertility.
Waiting for Histology
I spent a week in the hospital after the surgery. I stayed one night in intensive care, and the next day, they said I was stable enough to be moved to gynecology. That first week, there was no more talk about cancer or histology. It was focused on post-op care. Every day, they checked my sutures. I still had a drainage bag, so they checked that, changed bandages, and so on.
That week in the hospital, the pain in my shoulder came back, and I started to dwell on it. They sent me for an X-ray to rule out any fracture. The X-ray came back totally normal. Because I was in the gynecological ward, I was only seeing gynecologists. Since the histology was still being performed, they were very careful about saying anything that could sound like a diagnosis. When I would bring up my shoulder, they would say, “The X-ray came back clean, but we are still waiting on the histology. It might be related. We do not know.” I think they were aware it was a symptom, but did not want to tell me it was related to cancer, because they did not want to give me a cancer diagnosis.
I was discharged and went home for a week. I had nothing planned that week. They told me we needed to wait for the histology report to come back. They set up an appointment a week after my discharge for a post-op check-in and said they would have the results at that point. This was the middle of May when I went back into the hospital.
I Was Getting Worse
The week at home, I deteriorated rapidly. During the week in the hospital, my shoulder had started acting up again, but coming off the anesthesia and painkillers was manageable. At home, the pain was through the roof again. I had been eating well enough in the hospital, but at home, I went from feeling okay — sore and tender from the operation — to being sick. I was throwing up everything I tried to eat. I could not go to the bathroom. I felt constantly like I needed to pee, but no urine was coming out. I was very thirsty and was drinking a lot of liquids.
I said to my husband, “I think we should go back to the emergency room,” and he said, “No, it is probably just your body reacting to a huge surgery. You were under anesthesia for at least five hours. They said there might be some tummy aches and stuff like that. You do not have a fever, your stitches have not ruptured, and you are not bleeding. Let us just wait until the 13th.”
On the 13th, we went back into the hospital. I was sick. I needed my husband to push me in a wheelchair. I went into the gynecologist’s office, and next to her was my hematologist-oncologist. At that point, I knew what I was going to be diagnosed with. He was there to tell me that the histology report had come back and that they definitely knew it was a large B-cell aggressive lymphoma. He thought it might be Burkitt lymphoma. He said, “You are going to be hospitalized today, and there will be a couple more diagnostic tests before we decide what your treatment plan will be.”
My diagnosis came in steps. It was discovered in the emergency room. It took two weeks from that emergency operation to a cancer diagnosis and then another week to the complete diagnosis with a treatment plan. In those three weeks, I spent two of them in the hospital.
Hearing My Full Diagnosis
The testing all happened while I was hospitalized. They would say, “Today you are doing an MRI; tomorrow you are doing a PET scan.” I had to do a bone marrow biopsy, which required a lumbar puncture. I had many lumbar punctures. It was probably the worst procedure out of all of them. It was extremely painful for me. I also had a CT scan.
I was hospitalized again. The very next day, I was sent to urology to have stents put into my ureters because the masses were basically blocking them, which is why I had not been able to pee. I had a diagnosis, but it was not the complete diagnosis. I spent another week in the hospital while all of these tests happened. I was very sick, so they wheeled me on beds into all of the different rooms in the hospital to get the CT, the PET, and all of these things. About five or six days after that, I had the Burkitt lymphoma diagnosis, and we had my treatment plan in place. I started chemo immediately the next day.
My first feeling was relief to have an answer, especially for the pain in my shoulder and how ill I had been. There was some release in finally not having to sit with the unknown. Now we knew, and that meant we could do something about it. At the same time, I was completely shocked, numb, scared, and bowled over by the fact that I was 33 years old and had just gotten a cancer diagnosis.
A small part of me was hyper-curious because I had never heard about Burkitt lymphoma. I knew, broadly, about Hodgkin’s and non-Hodgkin’s lymphoma. I have had relatives and other close people in my life who have had cancer or passed away from cancer, so you broadly know about breast cancer or colorectal cancer. Nobody is ever talking about Burkitt lymphoma. I thought, “What is this?”
There was a tiny part of me that was very curious to learn more and to think, “I guess I am going to be a human experiment in a way,” because it is a rare form of cancer. It has fewer than 100 diagnoses in Italy, fewer than 400 in the European Union, and around 200 in the United States, from what I remember looking up. It is classified as a rare cancer.
There was a small part of my brain that was intrigued by learning about something I would never have stumbled upon otherwise, but that was a very small part. It was mainly fear, shock, and a lot of “Why me? What did I do? Was there something I could have done?” It was a weird mixture of relief, fear, and curiosity.
I Thought I was Going to Die
The staging confused me. When I first heard stage 4, I panicked and thought, “I am going to die from this cancer.” My doctor said stage 4 for non-Hodgkin’s lymphoma is a very different diagnosis than stage 4 in other cancers, especially those with solid tumors. It is not that tumors do not grow with lymphoma, but you cannot simply cut lymphoma tumors out. They will keep growing because the cancer is in your blood. He said a stage 4 liver cancer diagnosis is very different from my diagnosis.
Ultimately, the staging was because they found masses all over my abdomen, both above and below my diaphragm, which made it stage 3. Then they also found it in my bone marrow, so it had traveled to one site outside of a lymph node area. Because it was in the bone marrow, it was hurting my shoulder so much. But my lymph nodes in my neck, behind my ears, and in my clavicle were not swollen. The lymph nodes that had swollen, where the masses originally grew, were deep in my abdomen. That is why I never saw a mass anywhere in my body.
Choosing My Care Team
I found my care team because I was already at this hospital. We have a national health service in Italy, so there was never an element of an insurance company needing to approve or not approve certain treatments. At the hospital where I was treated, they said, “Here is the standard of care. This is the protocol used pretty much everywhere in the world as the first-line care for Burkitt lymphoma. Your state of illness is so advanced that we need to start treatment immediately. It is extremely life-threatening, and that is what is going to happen.”
I did not have a chance to ask for a second opinion, shop around hospitals, or speak to other doctors. At one point, especially in that first week after we knew it was cancer but were waiting on the full Burkitt lymphoma diagnosis, I thought, “What if I fly home to Canada? Would the situation be better?”
My parents rapidly came to Italy to be by my side through all of this. My dad said, “We can make it happen if you want to.” It seemed comforting for a second, but the reality was that I was way too sick to travel. I had been living in Italy for nearly a decade; this is my home.
I was worried about doing care in Italian, but my doctor also spoke English quite well. I was nervous about things that were not going to impact my care. The hospital where I was treated is the number one in the country, and it is in the top five oncological centers in all of Italy. I was in good hands, and I happened to stumble into good hands. Once I realized that, I knew I did not need to go anywhere else.
My Treatment Plan
My doctor said, “Here is the main protocol. It is called R-CODOX-M/IVAC.” I thought, “Cool, I do not know what any of that means.” I wrote it down and later that evening did a bunch of Googling. He explained that it is administered in four cycles and that, given my age and the staging of my cancer, we were going to treat it very aggressively.
The good thing about Burkitt lymphoma, to my knowledge and from what my doctor shared with me, is that it is the fastest-growing blood cancer known to man. The masses can double in size in less than 24 hours. He said the good thing about it being so aggressive is that it is extremely chemosensitive. The faster and more aggressively we treat it, the quicker it dies.
He explained that because I was young and had no underlying health conditions, they thought my body could tolerate it, so we were going to go with the most aggressive version of this protocol. I had all high-dose chemotherapy. Because of that, I would need to be hospitalized every single time. I was not able to do day-hospital; I had to be in the hospital.
Each round of chemotherapy required me to be in the hospital for about a month to manage infections and the period of having no white blood cells. He said, “It will be four rounds. We will be done by the end of summer, beginning of fall.” I said, “Okay, fantastic. When do we start?” He said, “We will basically start tomorrow.”
I asked about side effects. I said, “I know what the typical side effects of chemo are. What can I expect here?” He said, “You are going to lose your hair. You are going to feel nauseous.” He told me that neuropathy was a potential side effect — thankfully, that did not happen to me. He said the higher-risk side effects with this chemo protocol, being so aggressive, were potential infertility and damage to other organs, and they would be monitoring that closely. He also mentioned tumor lysis syndrome (TLS), when the tumor rapidly dies and releases a lot of toxins into your bloodstream that make you ill. He said those were the side effects most concerning to them.
I Had to Submit Myself
I had to submit myself to what was happening and put my faith in my doctor’s hands. I did a lot of praying to God and thought, “We are going to get through this.” I think, especially in healthcare communications, being in a European country is very different from North America. I say this not having experienced care firsthand in Canada or the United States but having family members in both countries who have had serious hospitalizations. I think in North America, we are more prone to asking a lot of questions and talking about advocating for yourself.
Culturally, I think that is different in Italy and in Europe in general, where it is more like the doctor says something and you accept it. I asked a lot of questions, and my doctor was amazing and answered them all, but there was never space to say, “I am not going to do something.” He would say, “This is life-threatening, and you are not a hematologist or an oncologist. I am.” It was never in a condescending way, but that is how healthcare communication tends to work in Italy. I noticed that even with my roommates in the hospital. They would say, “Wow, you ask a lot of questions. You ask all these informed questions,” and it is just not the norm there. People accept what their doctor says and go with it.
I’m Worried About Future Fertility Issues
At the time, my husband and I had been trying to have kids. Hearing that the treatment could affect my fertility was not an easy thing to hear. It is probably the thing I asked about the most during the entire treatment. Every single round of chemo, I would ask, “Do we know? Is there any way we can know?” Now that I have finished treatment, Leonardo is still seeing me, and I have picked up visits with gynecology as well so we can monitor if my ovary will start functioning again.
As of right now, I am still in menopause. It was not medically-induced in the classical sense, but they did give me a medication that stopped the production of estrogen as a way to protect my ovary. It is not a fully medically-induced menopause, but it is something that suppressed hormone production to protect the remaining ovary. As it stands, it is still dormant. We do not know if this will be permanent due to the chemo or temporary. It has been the most difficult thing and the element I still need to process the most.
When it came to chemotherapy, immunotherapy, and beating this cancer, I was very much like, “Whatever we need to do, we will do it,” and I tried to stay positive. But my darkest moments through the whole treatment — and even now — are when I stop to think about the fact that my dream of becoming a mother might not come true in the way I imagined it before getting ill. I still do not know how I feel about it, to be honest. Some days I am positive and think, “If it is a permanent menopause, there are other options available. My husband and I can get informed about adoption or other options.” Other days I think, “Hopefully I will be able to get pregnant one day and it will happen exactly like I intended it to.” Every day is a little bit different in how I feel about it.
I did ask about freezing my eggs. I said, “This is important to me. Is it an option?” My doctor said, “I completely understand. I wish it were an option for you. I do. But feasibly, to do that, it is going to be at least three weeks. You have to go through a round of drugs. They have to do some testing and so on. You do not have three weeks. You will be dead in three weeks if we had to wait to do that.”
I think if I had not discovered this through an emergency room visit, I might have been a little incredulous about that and thought, “No, we have time.” But because we discovered it the way we did, and I had already gone through an extremely life-threatening situation — the tumor causing such bad internal bleeding that I would have died if I had not ended up in the emergency room that day — the second he said that, I understood. I thought, “It sucks for me, and I am going to have to work through how much that sucks for me, but obviously I want to live, so we will go forward with the chemo.”
My Treatment Plan was Aggressive and Painful
I was hospitalized for every single round, so treatment definitely affected my day to day because I was sleeping in the hospital. From the middle of April until the end of October, I would spend four weeks in the hospital and come home for 10 or 12 days between rounds. I was put on sick leave at work, so I could not work at all during this period. It meant huge changes to my day to day and my whole family’s day to day.
My husband and I had just brought home a puppy in January, so we had a four-month-old puppy at home that needed a lot of attention. I work from home, so it had been great because I could take him for walks during the day. My husband is a chef, so he is out of the house. Suddenly, we were rapidly trying to figure out how to deal with our puppy, his work, and my hospitalization.
Thankfully, my parents were able to spend extended periods of time with us. My dad came for three months and then my mom came for three months. That was an immense amount of support. They did a lot of the day-to-day stuff, like buying groceries, cooking, and taking the dog out for a walk. They also came every single day to visit me in the hospital.
Treatment itself was difficult. Immunotherapy for me was a breeze. The way the treatment cycles worked is that it alternated between one chemo protocol and then a second set of chemotherapy drugs. Then we switched back to the first set, and round four was the second set again. Each round, I also did an immunotherapy infusion. Those never caused me any side effects. They had told me there was a potential for severe allergic reactions, but I never felt anything. The only thing was they gave me an antihistamine beforehand, which made me drowsy, so the immunotherapy days in the hospital were actually nice because I would just sleep through them.
Chemotherapy was rough. I would get infusions every single day, varying between five and 10 days, depending on which round we were in. The infusions would go anywhere from two to 24 hours, depending on which chemotherapy, because it was basically a cocktail of different chemotherapies, and each had its own infusion times and administration.
I was always hooked up to something, instead of having a port or a PICC line. I did have a PICC line, but it got severely infected, so I ended up getting a catheter in my neck every single time. I still have the two little scars there; I call them my vampire bites. I was almost always hooked up to something in my neck.
When I was not receiving chemotherapy, they had me on an immense amount of fluids. That made mobility in the hospital difficult because I always had something attached to me. I spent a lot of time in bed. The reason I had to be hospitalized for a month at a time is that in the first week or week and a half when we would do the chemotherapy, my immune system would be destroyed. Because the drugs were so aggressive, the period afterward, when your immune system is suppressed, was more acute for me than for people who can go home at the end of the day. I would get severe infections. I got a bad infection every single round, so then I would be on antibiotics for five to 10 days.
My hemoglobin levels would drop low, making me feel dizzy. I would not be able to walk because I would feel so dizzy. The nausea was something out of this world. I had no sense of taste, and most food was disgusting to me. Then I would throw it up anyway, so eating was difficult. It was difficult because you need to eat, or the nausea gets worse. It was a bad cycle of eating to throw up but also needing to eat to not feel nauseous. That was not fun.
Some of the chemotherapy drugs caused severe mucositis in some rounds. I would get bad sores all along my tongue and down my esophagus, and I could not eat, swallow, or talk. During one round of chemotherapy, it got so bad that they put me on an IV drip of nutrition because everything was so swollen and covered in sores that it was impossible to swallow anything. The side effects were intense and debilitating.
How I Coped Mentally
Losing my hair felt almost like nothing compared to everything else. My blood pressure would get low afterward, which, along with the low hemoglobin, made me dizzy; even just sitting up felt uncomfortable. It does not matter if you are in the hospital or at home; when you feel so uncomfortable in your body, nothing is a distraction. You are just stuck there for hours, not feeling well. It was difficult, and that would bring me to a dark place.
I got good at recognizing the patterns that set me off feeling bad, because each chemo round followed a pattern. By the last two rounds, I went in prepared. During the chemo days, I was able to get up every day. I would do some stretching, read books, and call friends and family. In the post-chemo period, for two weeks, I would disappear, feel terrible, and only see my parents and my husband when they came to visit me every day. I did not even try to make myself feel better because I knew the second my white blood cell count went up, the infections passed, and everything stabilized, I would start to mentally feel better. So I accepted it. It took me the first two rounds to figure that out. It was a lot.
The Hardest Moment of My Journey
The hardest moment was during my first round of chemo. I was hospitalized again mid-May. There was that week of testing with all the scans, and the second week is when we started treatment. My first round of chemo did not go well. I ended up doing a fifth round because I had to recuperate some of the chemotherapy I was not able to do in the first round. Tumor lysis syndrome occurred on day two, and I got a raging fever and became very ill. They had to stop chemo.
The hardest moment was about a week or two after that. I was still in the hospital because I had gotten a bad infection and was on antibiotics. I just wanted out. Because everything had happened so rapidly and as an emergency response, I think that was the moment when my body finally started coming down from the shock and adrenaline that had kept me going since the ambulance.
I had a temper tantrum like a toddler. I just wanted out of the hospital. I did not want any needles in me. I did not want anything anymore. I thought, “I want all of this stuff out of my body right now. I want to go home. I do not care about any of this. This is not what I signed up for. I do not know what the universe has against me, but I need out.” My hair was also falling out in massive clumps, which did not help my mental health. I wanted to shave my head. I did not care about being bald, but I did not want to look like that anymore, with my hair looking bad.
Instead of feeling safe and taken care of in the hospital, I felt almost like I was a prisoner. It was a deeply emotional response to everything that was happening. My parents and my husband were thrown into this by surprise too, so none of us knew how to handle the situation. They were telling me to be patient, trying to make me feel better, and that was making it worse. I was crying and crying and crying. I was ready to yank everything out of my body and walk out of the hospital, even though I could not walk.
My doctor came in, put his hand on my arm, looked at me, and said, “Everything you are feeling is normal. It is okay. I cannot discharge you yet. You are too ill. But you will be okay.” I immediately calmed down. I was still crying, but I calmed down. He said, “We will talk more tomorrow,” and I said, “Okay, that is fine,” and left it at that for that day.
The next day, when he came in for the daily debriefs, I said, “I am sorry for my behavior yesterday. I do not know what came over me.” He said, “You do not need to apologize. It is normal. You have overcome so much trauma in such a short period of time. It is normal, and I want you to know that it is normal. I have requested that when you come in for the second round, you will have psychological support for the rest of your chemotherapy treatment provided by the hospital, because this is a lot. You are young, this is life-changing, and it is totally okay.”
A week later, after that moment, I was discharged. I was able to go shave my head, which made me feel a lot better. A lot of people are scared of that moment, but it made me feel better because pulling my hair out for weeks was bad. When I went back into the hospital for round two, I met with a psychologist. For every other round, a psychologist came and visited me every week. It was a moment for me to speak to somebody whose emotions were not tied up in the situation. That was extremely beneficial.
How Cancer Impacted Me
Psychologically, even now, this whole experience has impacted me a lot. My uncle had throat cancer and has been in remission for three years. We were talking about it over Christmas, and he said, “You are going to get a new lease on life.” I said to him, “I do not feel that. I do not feel a new lease on life. In fact, I feel like my quality of life has been decreased because of this.”
For the next five years, foreseeably, I will have regular checkups and scans, all of which bring a small set of anxiety. I had an MRI scan two weeks ago, and just a week of waiting for results brought a lot of stress and anxiety. I was worried about it, and I have never been a very anxious person. That is new for me. There is scan anxiety, the fear of it coming back, and a more heightened state of alertness about my body and how I feel. “Who would have ever thought shoulder pain was cancer?” That is something I am still working on with a psychologist.
At the same time, I feel like I came back to myself. In the few years before the diagnosis, I think I had lost touch with myself. When you make a big move to a new country, you usually do it because you deeply want to. You feel passionate, you are ready to risk a lot of things, and it is not the most traditional path forward. Right when I turned 30, we moved to Milan. It aligned with a more traditional path. My husband and I got steady work at that point and moved toward building a family, buying a house, and planning our wedding — all these stable elements of life that you think you are supposed to do and things we wanted to do.
With that came a new sense of responsibility to get there and be able to do those things. Before, it was, “I am just going to move to Italy,” or, “I am going to take this job because I feel passionate about it,” and it was not as much about long-term benefits. In the years leading up to the diagnosis, I do not think I was fully true to my slightly spontaneous nature.
Coming out of this, I feel like I have been able to reconnect with that version of myself. I have been reminded that you do not have to have a plan. You do not need to know exactly where you are going in life. As long as you stay open to what comes your way and are joyful about it, you will probably get where you want to go in the end. That has been nice. It has been liberating to let go of certain status quo norms I felt I needed to have in order to be successful in life. But there is still that element of increased anxiety that I never dealt with before.
I Was Declared NED Before the Holidays
Survivorship is still new. I was given the no evidence of disease or complete remission diagnosis at the end of November 2025. I almost do not believe it sometimes. When my doctor told me, I almost took it for granted. I thought, “Of course. We just did all of that horrible therapy, so this was the only outcome available.” I had never questioned that we would not get there. I was convinced from the very beginning that we would get there.
When he told me, I thought, “Fantastic.” Now, a couple of months out, I am starting to feel a little more like, “What if it comes back? What does this actually mean? I am now a cancer survivor, and I will be for the rest of my life.” I think I am still trying to figure out what that means. I am trying to understand my new limits, physically and mentally, and what rest looks like. I do not try to push myself as much. I love to travel. Before, I could spend most of the month out and about, between planes and trains and car trips, and I definitely cannot do that right now. I am trying to understand my new limits and be okay with constantly reassessing that.
The further out I go, most likely, the stronger I will get, and the more physically capable I will become. There are a couple of women in Italy who have also had cancer and do a lot of work sharing the importance of psychological care during cancer treatment. I am quite interested in that. If there is a way to get involved in promoting the importance of that, it might be something I want to do. For the most part, though, I think there is still a lot of processing left to be done.
What I Want Others to Know
Trust yourself and trust in your body’s ability to get better. One of the things hugely helpful for me was that from the moment we had the treatment plan, despite it being difficult, feeling horrible, and all the fear, I never once stopped believing in its ability to heal me.
I stayed quite positive — not in a way of forcing myself to be happy, because I was not happy about the situation. I did not want to be there; if this had never happened, that would have been fantastic. But I stayed positive about the power of being taken care of, of the treatment, and of having a care team. I stayed grateful for all of the support I had. My parents were able to leave Vancouver and come for an extended period of time. My work was extremely accommodating. My doctors and nurses were fantastic.
Staying extremely grateful for being able to get the care that I had and truly believing that it was going to make me better was the right mindset to get through something extremely difficult. Trust in your care team, but also trust in your body to get better. Accept the healing.
Symptoms: Constant fatigue, tongue deviated to the left, abscess in right breast, petechiae on legs, night sweats, nausea and vomiting, persistent cough
Symptoms: Severe fatigue, deep shoulder pain, ear pain with inflammation, abdominal and pelvic pain, bloating, early fullness, nausea, difficulty eating, inability to urinate despite feeling an urgent need, internal bleeding, delayed period/bleeding, intense whole‑body pain leading to collapse
Treatments: Surgeries (emergency laparoscopic surgery with left ovary removal), chemotherapy (R‑CODOX‑M/IVAC), immunotherapy, hormonal therapy (to protect the remaining ovary)
Diagnosed with Stage 3C Low-Grade Serous Ovarian Cancer at 21: Julia’s Experience
Stage 3C ovarian cancer entered Julia’s life when she was just 21, in the middle of college, serving as sorority president, and working as a full-time nanny. What first showed up as unexplained weight loss, chronic acid reflux, and months of feeling unwell in 2020 was initially attributed to other causes, including an autoimmune condition, Behçet’s disease. By 2023, her symptoms escalated into rapid abdominal bloating, early fullness after a few bites of food, frequent urination with hip pain, and extreme fatigue. These are classic red flags of ovarian cancer that can be easy to miss in a young adult.
Concerned about sudden weight gain and ongoing pain she thought might be a urinary tract infection, Julia went to urgent care, where a clinician ordered abdominal and pelvic imaging. Ultrasounds revealed large ovarian cysts and a kidney nodule, leading to tumor marker tests, a CT scan, and a recommendation for surgery. Even with an elevated CA-125 level, she was reassured that it probably was not cancer. Eight days later, surgeons opened her abdomen and found tumors “like grains of salt or sand” across multiple organs, including a teratoma and widespread low-grade serous carcinoma.
After that first surgery, and an emotionally devastating moment reading the words “malignant metastatic” in her pathology report email, Julia underwent a full hysterectomy and debulking surgery that removed her reproductive organs, omentum, and affected peritoneal tissue. Pathology staged her as 3A after successful removal of visible disease, and she went on to receive six rounds of chemotherapy: “icing on the cake” measure for a cancer that is not fully chemo-responsive. Side effects included hair loss, severe mouth ulcers, joint and bone pain, neuropathy, weight gain, and intense chemo brain.
Today, on maintenance hormone therapy (exemestane), Julia lives with fatigue and ongoing emotional processing of young adulthood reshaped by cancer, infertility, and altered social life. At the same time, she embraces her scars, works in dermatology, and leans into survivorship by saying yes to new experiences, pursuing her goal of nursing school, and advocating through organizations like the Ovarian Cancer Research Alliance. For other young adults, she underscores the power of listening to your body, pushing for answers, and showing up for loved ones. She also says it’s helpful to acknowledge how much “this really, truly sucks.”
Watch Julia’s video or read the edited transcript of her interview below to find out more about her ovarian cancer experience:
Listening to persistent symptoms like bloating, rapid weight changes, early fullness, and pelvic pain can be critical, even with other diagnoses
Stage 3C low-grade serous ovarian cancer can be extensive at diagnosis, yet still managed with aggressive surgery, careful staging, and follow-up treatments such as chemotherapy and hormone therapy
Many patients feel like a burden and hesitate to ask for help; having people who simply show up, acknowledge that the situation is not okay, and offer concrete support can make an enormous difference
Julia’s experience shows a profound transformation from busy college leader and nanny to young adult cancer survivor who embraces her scars, reimagines fertility, and chooses to live life on her own timeline
Support that honors a person’s full identity and not just their diagnosis helps maintain a sense of normalcy, especially for young people navigating cancer, fertility loss, and changing social lives
Stage 3C (discharged as stage 3A after surgery and final pathology)
Symptoms:
Unexplained weight loss and then rapid weight gain
Chronic acid reflux and heartburn
Persistent bloating and abdominal distension
Early satiety
Frequent urination with hip pain
Extreme abdominal pain and tenderness
Treatments:
Surgeries: abdominal surgery to remove large ovarian cysts, full hysterectomy, debulking surgery
Chemotherapy
Hormone therapy: exemestane
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.
Getting diagnosed with stage 3C low-grade serous ovarian carcinoma at 21
My name is Julia. I live in Sacramento, California. In 2023, I was diagnosed with stage 3C low-grade serous ovarian carcinoma.
What I’m passionate about and what I do for fun
Since my diagnosis, I’ve become most passionate about awareness for ovarian cancer. Other than that, I’m passionate about skin care, makeup, and skin health. I like hanging out with my family and friends for fun. I have a dog, so I like playing with her.
I work at a dermatology office, which ties into my passion for skin and skin care.
How my friends would describe me
My friends might describe me as a little random, maybe sporadic at times. I think they would say I’m loving and thoughtful. My personality is pretty introverted overall, but with my close friends, I’m very loud and outgoing.
College, sorority life, and a very busy schedule before cancer
Before I was diagnosed, I had just turned 21. I was the president of my sorority and was about to be a senior in college. I was a full-time nanny for a baby who, at the time, was four months old, and I was watching her Monday through Friday.
I would come home, do all my sorority responsibilities, and prepare to start the school year. I had just gotten my phlebotomy license, so I was finishing schooling and had taken the test. Life was very busy. I was with my friends almost every day, or my boyfriend every day, plus work, school, and any other errands I had to do.
First symptoms and changes I noticed
Looking back now, I think my symptoms started in 2020. I got sick in June 2020, which lasted almost a full year. I had food poisoning that triggered a whole bunch of symptoms. I lost about 50 pounds without even trying.
My doctors kept telling me, “This is normal for you.” At that time, I wanted to lose weight, but I wasn’t trying to, and they were saying, “This is good. Keep the weight off and your symptoms will go away. You’re 18, but you have chronic acid reflux.” I remember thinking, “That’s not normal.” I even had a colonoscopy, but it was completely normal. There was nothing they were concerned about. I was very limited to a few foods. My very first symptom was unexplained weight loss.
In 2023, the majority of my symptoms became present. I had gained almost all of the weight back. I remember buying jeans in July, and by August, I didn’t fit into them anymore. That was a big sign that something was wrong. I was bloated 24/7. I would eat three bites of a meal and be completely full. No part of me wanted to eat anymore.
I had chronic acid reflux and heartburn. When I would go to the bar, I had to go to the bathroom all the time. I was still a nanny and kept thinking, “I can’t keep leaving her; this is stressing me out,” because I didn’t know why I was going so often. When I did go, I had shooting pain up my hips, which was weird. I thought I might have a UTI.
Another symptom was extreme abdominal pain. I was super bloated. I remember one night, while lying down, my boyfriend pressed on my stomach or something like that, and I jolted up because of a lot of pain. All of these symptoms that I consistently noticed happened within about two weeks. They had been happening for a while, but I wasn’t paying attention until they all came together at once in that window.
I also wasn’t paying attention to them because in 2021, I was diagnosed with an autoimmune disorder, Behçet’s disease, which has a lot of gastrointestinal (GI) problems. I thought it was my autoimmune disorder and not anything else.
What made me finally seek medical help
I originally went to the doctor because I was worried I was gaining too much weight too fast. That was odd to me. Then I went to urgent care after work one day because I thought I had a UTI that wasn’t resolving. I had been having that shooting pain in my hips for at least a week and thought, “This is weird,” so I went to urgent care for that. Everything started happening from there.
Urgent care, ultrasounds, and first imaging results
I went to urgent care and had an amazing doctor who felt my stomach and said, “It’s not normal, but it’s not so abnormal that I think something serious is wrong.” She sent me for an abdominal ultrasound and then a pelvic ultrasound. I was originally supposed to get that done a full week later.
I had gone to urgent care on a Wednesday or Thursday. That Saturday, I was still having symptoms, so my boyfriend said, “We’re going to urgent care again, and you’re going to get imaging done today. You can’t wait.” I’m grateful he did that because I was able to get my abdominal ultrasound and pelvic/transvaginal ultrasound that same day.
I was told my results would be back in a week. My boyfriend played college football, so he had to go after one of the scans. I went to my friend’s house, and by the time I arrived, my results were already back. Immediately, I thought, “This is not good. They either found something bad or it’s nothing and they could just read it quickly.”
I looked at my results while walking into my friend’s house. At that time, they found an 8.5-centimeter cyst on my left ovary and a 6-centimeter cyst on my right ovary, or maybe it was 3 centimeters — it was large, and I was freaking out. My friends said, “It’s okay. Cysts happen all the time,” and started naming friends with ovarian cysts. I tried to reassure myself, but then I read that they also found a nodule on my kidney, and I started freaking out again. At the bottom, the report said, “Please refer to a gynecologist.”
I was able to get in to see a gynecologist the following Tuesday. The gynecologist said we would have to do a Cesarean-section–style removal of the cysts because they were large. He did a test for a few tumor markers, including a CA-125 test and two other ones, and sent me for a CT scan. Looking back, you can actually see my cysts when I’m standing to the side.
He said he didn’t think it was cancer but wanted to loop gynecologic oncology into my case because my cysts were so large. He wanted a surgeon present at the surgery so that if anything was cancerous, they could take over.
I remember being freaked out by that, but I was more concerned about missing the first week of school than the idea that it could be cancer. This all happened at the end of September, and where I went to school, our first week of classes was the first week of October.
CT results, CA-125, and the first major surgery
I got my CT scan done about two days after that appointment. The results arrived while I was at work. The doctor said, “Good news: it doesn’t look like cancer. We can’t see any other tumors or anything like that.” But my cyst on the left ovary was 13 centimeters, and the one on the right ovary was 8.5 centimeters, which were still causes for concern.
My CA 125 came back at 147; the normal range is 35 and below. They told me that was also concerning, but the CA 125 can be elevated for many reasons and doesn’t necessarily mean you have cancer. I remember going home thinking, “Okay, I probably don’t have cancer.”
I had surgery eight days after that appointment, the following Wednesday. At that time, I lived in Portland, Oregon, so my parents flew up to be with me. I went into surgery understanding that it could be cancer. When they opened me up, they found tumors everywhere.
My surgeon said my tumors looked like grains of salt or sand all over my organs, so she couldn’t easily tell what was abnormal. She biopsied a lot of areas, and everything she biopsied came back as cancer. Inside my right ovary, I had a 6-centimeter grade 1 germ cell teratoma, which is another type of ovarian cancer. I had two types of ovarian cancer at once, but my final diagnosis was low-grade serous carcinoma because that was the majority of the biopsies.
In that initial surgery, they were able to save my ovaries and successfully remove the cysts, which allowed me time to possibly freeze my eggs if I wanted to. My doctor was amazing. She said she knew what I wanted for my future and that saving my ovaries would be the best option for now, since we were going to have to go back in for a hysterectomy anyway. Saving them would give me the option to try to freeze my eggs.
PET scan findings, spread of disease, and debulking surgery
About two weeks after that first surgery, I had a PET scan and also attempted to freeze my eggs. Unfortunately, my ovaries were too damaged to successfully freeze eggs. I didn’t feel the cost of egg freezing was worth the likely outcome.
I didn’t want to put myself in a position where I might decide to have kids and be heartbroken if none of the eggs worked. If I didn’t freeze them, I might avoid being heartbroken in the future. That gave me a clearer mind going into my future and my next steps. My doctor totally understood.
The PET scan was incredible in the sense that it didn’t show any further spread beyond areas we already knew about. It didn’t show anything new that they were concerned about. The cancer involved my omentum, colon, bladder, entire reproductive system (including my uterus), the cul-de-sac (a tissue behind the uterus connecting to the colon), and my peritoneum. My peritoneal wall was covered in cancer as well, which put me at stage 3C.
Five weeks after my C-section–style cyst removal, I had a full hysterectomy. They cut me vertically instead of horizontally and removed my omentum, the lining of my colon, the lining of my bladder, my full reproductive system, some lymph nodes, and my peritoneum.
What was amazing was that there was no cancer in the lymph nodes and no cancer in the omentum after the first surgery. Because of that, my staging was adjusted; I was discharged as stage 3A.
That was a big relief, knowing I came out of surgery tumor-free with nothing left in my body that they could see. I also went into surgery with the possibility of needing a colon resection (colectomy), but that didn’t need to happen. My doctor said the “teeth” of the cancer hadn’t sunk in far enough to require that, and they were able to get everything.
After that, I had six rounds of chemotherapy.
Recovering from the cystectomy and waiting for pathology
Recovery from my first surgery was difficult. I was in the hospital for three days. I remember looking at my nurse and thinking, “How do people have children after this? This is crazy, and they have to actively take care of a child after this.”
I was in bed almost every day. By about a week to a week and a half, I was up and walking — slowly but walking. It was nerve-wracking because I didn’t get my pathology results until about seven to nine days after surgery, so I was anxiously waiting for those results.
Recovery is tough because you use your abdomen for everything, but it has just been cut open. You can’t move; it’s uncomfortable. I was stuck in my apartment for almost two full weeks because even being in the car was too painful.
Reading “malignant metastatic” in an email
I actually read my final results via email. I got a notification that my test results were ready, and I wanted to see them. Coming out of surgery, I had been told I had a borderline ovarian tumor and that surgery was the only thing needed. I was still going to be an oncology patient so they could monitor me, but they thought they had gotten it all and that it was fine.
So I was thinking, “Great, this probably isn’t cancer.” Then I opened the pathology report while sitting in my apartment with my mom. At the top, it said “abnormal” and “malignant metastatic low-grade serous carcinoma of the ovary.” I was shocked. I remember asking my mom, “Does this mean it’s stage 3 or 4?” and she said she didn’t know. She was freaking out too, but she was trying to stay calm while also trying to reach my dad, who’s a teacher and was in class.
Every single biopsy said low-grade serous carcinoma. It was everywhere. I sat there in shock. My doctor was in surgery all day, so she couldn’t call me right away, and she didn’t know the results had been posted before she could explain them.
It was a surreal moment. I had been thinking, “I don’t have cancer,” and then I read “malignant metastatic.” I’ve always been very interested in healthcare, so I knew exactly what those words meant. I wasn’t reading them for the first time without context, which made it even scarier.
My surgeon called me at 8 p.m. after her full day of surgeries. She had told her staff that even though I had an appointment in two days, she was not going to wait to talk to me. She said, “Do you know what it’s like to be 21 and get diagnosed with cancer through an email? I’m calling her.” She talked me through what it meant and the next steps.
Five weeks later, I had my full hysterectomy, and six weeks after that, I started six rounds of chemotherapy every three weeks.
Chemo as ‘icing on the cake’ and what I went through
My cancer isn’t fully responsive to chemotherapy. My team described chemo for me as the “icing on the cake.” It was more of a preventative measure, possibly also because of the germ cell tumor, though I’m not entirely sure. They just wanted to make sure they had truly gotten everything.
I lost all of my hair. I finished chemo in April 2024. I had bad mouth ulcers. My lip was about three times its usual size because of ulcers inside my lip. I was nauseous. My taste buds changed a lot, which was interesting and strange.
I had extreme joint and bone pain. When I got out of bed, I had to hobble. I always had to wear shoes in the house because I couldn’t walk flat-footed. I gained 60 pounds from chemotherapy and was out of breath all the time.
Now I have neuropathy from chemo. My arms and legs go numb probably within a minute of being in certain positions, especially when I’m working out. My arms and legs go numb a lot. Working in dermatology, my arms go numb when I’m in certain positions helping the provider, but I make it work.
I also have very intense chemo brain. I will stop mid-sentence because I have no idea where I was going with my thought. I say things that, in my head, don’t make sense. My friends and family tell me they understand me, but while I’m speaking, I often feel like what I’m saying doesn’t make any sense.
The worst side effects were bone pain, loss of appetite, and mouth ulcers.
Finishing chemo and celebrating at the infusion center
I was able to ring the bell when I finished my last round of chemo. At my infusion center, you were only allowed to have one guest with you, but they let my whole family come back so they could watch me ring the bell. My sisters and my parents flew up to be there, which was incredible.
I’m an awkward person and don’t love a lot of attention on me, so it felt a little awkward. But I remember being in awe that I never had to be there again, that I never had to go into that infusion center again. It was a surreal moment. It finally hit me that I had actually gone through everything I had gone through and had finished chemotherapy. It wasn’t just like having a bad cold; it was a very serious illness.
Choosing to stay in Oregon while the family was in California
I was getting treatment in Oregon while my family was in California. I decided to stay because my friends and my boyfriend were there, and I knew they could all support me. My friends told me that if I needed to go home, I should absolutely go home, but they were willing to be there for me. My younger sister lived in Seattle, so she could easily take the train down to be with me if needed. My parents were with me every other week.
The hardest parts of having cancer
The hardest moment initially was my diagnosis and knowing how much my life was going to change. Emotionally, the hardest part was that no one else in my circle would ever fully understand what I was going through at the level that I did. There are still things people close to me don’t know about how hard it was because I didn’t want to burden anyone.
That feeling of burden is a common discussion in the cancer community — feeling like your illness is burdening other people and feeling bad that you have to ask for so much. I felt bad asking my friends to accommodate me constantly, so I didn’t share a lot of what I was going through. I didn’t want to take away from my friends’ senior year of college. My friends have been the best friends. My family and my hometown friends have been amazing. They always checked in on me. But I didn’t always share the nitty-gritty.
Another hard part was missing out on things because I was sick or knowing my body couldn’t handle them. My self-confidence andbody image decreased a lot, which worried me. I didn’t like the way I looked and had trouble getting myself to do things or trying to feel “normal.” I also didn’t want people to pity me because I was sick. When I went out bald and very clearly sick, I didn’t want to be treated differently, and that stopped me from doing a lot of things.
What helped and what to say (and not say)
One of my sister’s best friends, who is like a little sister to me, sent me a text when I was first diagnosed. She said, “You’re not okay, and I know you’re not okay, and this whole situation is not okay.” She told me it was okay not to be okay and okay to be angry, and that she would support me in being angry.
I don’t remember the exact wording of the whole message, but that was the gist: it’s okay to not be okay and to be angry. That meant a lot because when people get diagnosed with cancer, a lot of people say things like, “You’re so strong,” or “Stay strong,” or “You’re going to be okay.”
I’m not judging anyone for what they say because it’s hard to know what to say when someone gets cancer. It’s an uncomfortable situation to address. But for me, I didn’t like being told to “stay strong” because I didn’t have another option.
Knowing that someone acknowledged that the situation wasn’t okay, that they knew I wasn’t okay, and that they supported me in whatever I was feeling meant so much. I appreciated all the support I got, but that one text stands out the most.
That’s an example of how to support someone, not just with cancer but with any chronic illness or difficult situation. I often say, “This sucks.” There’s no better word; it just sucks. If you acknowledge that to the person you’re caring for and say, “This situation sucks. I wish it wasn’t happening, but I’m here for you, I’m thinking of you, and I love you,” that goes so far.
You’re not telling them that they’re going to be okay; you’re just being there. A lot of people going through cancer don’t want to ask for help. Small things my friends did meant so much: going to Costco and picking up things for me, getting groceries they knew I liked, or just coming over to watch a movie.
Friends from home did things too. One of my best friends got me a blanket and just wanted to sit on the couch and watch movies with me when I came home. Not having to tell people what I needed or wanted was awesome.
My boyfriend was also amazing. I remember having insane cravings when I had no appetite. At one point, I wanted New York-style pizza from downtown Portland and Chick-fil-A from Beaverton, which was 20 minutes away. He took me to get both. I only ate half, but he still took me. Just being there and supporting me in those small ways was incredible.
My younger sister’s sorority sent me flowers and a basket with skincare products, heating pads, and things to take care of me during chemo. That was cool because it showed my sisters were being supported, too, not just me. My older sister lives in San Diego and called me as much as she could. Her friends reached out to me as well. I had a huge support system, and I was grateful.
Living on hormone blockers and adjusting to a new normal
Now I’m on a maintenance drug called exemestane, which is a hormone blocker. I’m pretty fatigued a lot of the time; I could lie in bed all day if I wanted to. Chemo brain is still rough.
I’m slowly getting back to how I was before cancer, both physically and in my personality. It has definitely changed the way I view things and what I like to do. I don’t like going out much anymore. I will go out with my friends, but I don’t drink and don’t enjoy going to bars the way I did before.
In your 20s, going out is such a normal thing. I’m 23 now, but my 21-year-old life looked very different because that’s usually what people that age are doing. I still need accommodations sometimes, but now it’s more about the mental side of things.
It’s hard for me to be around conversations about getting pregnant. I have multiple people in my life who are pregnant or have just had babies. I’m so excited for them; it brings me so much happiness. But it’s still hard to hear conversations like, “We’re trying to have another baby.” People are very considerate and don’t talk about that around me, which helps.
At one point during the conversation, I had to hand my sister the office keys so she could leave. We work at the same office, and I have the office keys, so when she leaves before me, sometimes I forget to give them to her.
Emotionally, this whole experience has hit me the hardest. It hits me when I’m doing or not doing things I used to love. When I don’t want to do those things anymore, I get down on myself and feel guilty.
Physically, I think I’m doing okay. I love my scars; I see them as signs of what I’ve been through. I have no shame in them at all. I love talking about my story and bringing awareness. Getting people to listen to their bodies is important to me.
It still affects me emotionally, and I still get mad about it sometimes. When I go back to Portland to see my doctor, it hits me every time. It’s like a wave; it still bothers me, but I’m processing it.
Saying yes, following my own timeline, and advocating
Survivorship, to me, means saying yes to things I would normally say no to. I want to experience more things now. I recently got back from Colorado with my friends, and in the past, I might have said no because I didn’t want to miss work. Instead, I went and had so much fun. I’m so glad I said yes.
Survivorship also means pursuing my dreams and goals and not waiting anymore. It means living on my own timeline. In the past, I might not have done certain things because the people in my life weren’t on the same timeline. Now I think, “Who cares? That’s life.” Anything can happen. I never expected to get cancer at 21, but I did, so all I can do is try to take control of my life again.
For me, that means pursuing my dreams. I want to go to nursing school and am doing everything in my power to get there. I work in a medical office that I love. Living on my own timeline and not waiting for everything to line up perfectly is what survivorship looks like.
Survivorship also means being an advocate. I speak with survivors and teach students through the Ovarian Cancer Research Alliance. That is important to me because getting people to hear my story matters. You don’t often hear about a 21-year-old being diagnosed with a rare ovarian cancer. I think people should listen more.
I’m not saying people don’t listen, but I want to share my story and have people hear it.
Being young, fertility loss, and wanting to be treated as ‘still me’
As a young woman with ovarian cancer, a lot of people I meet are in their 40s, 50s, or 60s. Many of them have already had children and experienced life stages that I won’t have in the same way, which is hard for me.
When I was going through cancer, all I wanted was for people to treat me normally — as their friend, sister, or daughter. Everyone did a great job of that. My parents were amazing. They flew up to see me, listened to me, and still talked to me about what was going on in our family and in their lives.
Being young with cancer doesn’t mean you stop being all the things you were before. Treating people with a sense of normalcy is important. My friends later told me they didn’t want to burden me with what they were going through because I was already going through so much. I would have loved to hear it. It would have made me feel normal.
Treating someone with a sense of normalcy and still seeing them for who they are is important. Seeing me as still Julia, even though I have cancer, is the biggest thing. My sisters still joked with me. I cope with humor and loved that they would still joke and tease me, while also being careful and more sensitive. They treated me like I was still me, which I loved.
On the fertility side, there are a lot of emotions that come with knowing I can’t carry a pregnancy. That’s one of those experiences where if you get it, you get it, and if you don’t, you don’t — and that’s okay. It has definitely changed conversations with my friends. We talk a lot about what IVF will look like. I make jokes like, “At least I get to choose what my baby looks like,” because I cope with humor.
It’s hard being young and having to go through all of that. A lot of my thoughts are about what my future will look like. But I would rather be alive and healthy than have skipped the hysterectomy or only taken out part of what needed to go.
In a way, I’m grateful I went through what I went through because it has changed me, and I’m grateful for that growth.
Symptoms: Pressure on bladder, throbbing pain, could feel growth on right side of abdominal area Treatments: 5 surgeries (official diagnosis after 3rd)
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Symptoms: Stomach pain, constipation, lump on the right side above pubic area Treatments: Cancer debulking surgery, chemotherapy (carboplatin & Taxol, then Doxil & Avastin)
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Symptoms: Unexplained weight loss and then rapid weight gain, chronic acid reflux and heartburn, persistent bloating and abdominal distension, early satiety, frequent urination with hip pain, extreme abdominal pain and tenderness
Treatments: Surgeries (abdominal surgery to remove large ovarian cysts, full hysterectomy, debulking surgery), chemotherapy, hormone therapy (exemestane)
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When Phil was finally diagnosed with ROS1 lung cancer (stage 4), he had already spent months being told his relentless cough was “just” pneumonia or possibly coronavirus. By the time a lung biopsy revealed cancer, he was sitting in a COVID-era exam room, masked and separated by plastic, listening to a local pulmonologist tell him to go home and “get his affairs in order.” Phil had never smoked and had just lost his father to lung cancer the year before, so the diagnosis and prediction of only a few months to live landed hard on him and his family.
Instead of accepting that first opinion, Phil turned to trusted family members for help. His cousin and her husband, who was a retired physician, urged him to seek care at a National Cancer Institute-designated center and walked him through how to make his own appointment with the chief thoracic surgeon at UT Southwestern in Dallas. He met Dr. Ben Drapkin, who recognized how advanced and aggressive the tumor was and pushed for genetic testing when surgery and radiation became too risky. That testing uncovered a ROS1 mutation, opening the door to targeted therapy designed specifically for this rare form of lung cancer.
The first targeted drug worked well for about two years, shrinking and controlling the cancer until it eventually developed resistance, including the G2032R mutation. Rather than stopping there, Dr. Drapkin connected Phil with Dr. Jessica Lin at Massachusetts General Hospital for a clinical trial of a newer ROS1 inhibitor that better fit Phil’s active lifestyle goals. The trial required frequent travel from Texas to Boston, but it also gave Phil stability: his scans showed very small tumors that were not growing, including a treated metastasis in his spine.
Phil talks openly about building a full support team, including a palliative care doctor, a cancer psychologist, a primary care physician, and even a dentist, to manage side effects, mental health, and day-to-day quality of life.
Retired from his Fortune 500 career, he and his wife enjoy their weeks with simple routines, like walks at Costco, and longer-term plans, like cruises, trips to Tahiti, and dreams of sailing from Hong Kong to Singapore. Most of all, he focuses on the future. He looks forward to seeing his three daughters complete their graduate degrees and begin careers in healthcare and education, trusting that science and the right team will continue to open doors.
Watch Phil’s interview or read the edited transcript below to dive deep into his story:
The importance of advocating for yourself by seeking a second opinion at a National Cancer Institute-designated cancer center
How comprehensive biomarker testing can change everything, especially when it comes to treatment decision-making
Why a strong care team goes beyond your oncologist and how each specialist can play a critical role in a patient’s quality of life.
How Phil lived fully with ROS1-positive stage 4 lung cancer through mental health support and intentional routines
How Phil moved from expecting only months to live to planning cruises and celebrating family milestones
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
My life before cancer: personality, family, and daily life
Up until about a year ago, I was working. I have a fantastic career and a fantastic family. My wife and I are parents of three daughters. Our eldest is Jacqueline, and we have identical twins, Caitlin and Christina. We moved from San Diego to Texas because our dream was for them to go to The University of Texas at Austin. As somebody put it, it’s like catching lightning in a bottle to get three kids into that university, but they did. We have always been very focused on our children from the time we raised them.
Jacqueline is going to get her doctorate from The University of Texas at Dallas. She is going to be a doctor of audiology specializing in pediatric and geriatric hearing loss. The twins are both in graduate school at Texas State University. They’re going to be school psychologists. They are two years into their graduate program and have another two years.
I was your typical Fortune 500 corporate executive. Most of my career was with Sony in New Jersey. Then they moved us around 2004 to San Diego. I had a very heavy travel schedule. I ran technical support and a few other things. I was traveling from San Diego to Florida every other week, a lot of trips to Japan, and a tremendous number of trips to Manila. That is where I had most of my team, as well as Costa Rica and El Salvador. I was the guy doing 100,000 to 150,000 miles per year flying and home with the kids very often and doing all the kid stuff.
I got a similar job at another Fortune 500 company, Global Payments, which is what brought us to Texas. They do financial technology. I spent a lot of time traveling to Manila. We had a team and an operation over there. I worked in downtown Dallas until the pandemic and my illness, and then I worked from home.
My ability to work slowly declined due to treatment, a lot of doctors’ appointments, neuropathy that made it difficult to type, and other the side effects that go along with treatment. At 65, I decided to retire and let Medicare pick up their part of the treatments that I go through.
Early symptoms and delayed diagnosis before COVID
Everything went about as wrong as it could possibly go. A year prior to my diagnosis, I went to Manila. We have a team over there and there was a huge holiday party. Certain executives from around the world flew in to show their support and meet with the teams. Every single time I have been to Asia in the past 35 years, I come back with a sinus infection. I came back from Manila, and, like always, I had a nasal drip and a cough. After about a month, one of my colleagues goes, “Phil, that cough isn’t going away. You should see a doctor.”
I saw a doctor — it was easy to get an appointment back then — and he loaded me up on antibiotics, which was not unusual. After two weeks, I went back and he said, “It’s still not cleared. I will give you another two weeks. That will clear it up.” But it didn’t, so I was given more antibiotics and more antibiotics. Eventually, he had a chest X-ray done and said I had pneumonia, so they gave me more antibiotics. This was when I learned that the quality of chest X-rays and radiologists are not the same everywhere.
[Editor’s Note: Many people with lung cancer are first diagnosed with pneumonia. Because symptoms and imaging findings can overlap, a study published in the British Journal of General Practice shows that this occurs in an estimated 20–25% of cases and reflects a known challenge in identifying lung cancer early.]
I took the antibiotics for a while and he said, “We have to do a CT scan.” I also learned that the quality of CT scans is not the same everywhere. I didn’t know then that it should have just taken about 30 seconds with modern equipment, but since it was a very old machine, the scan took about 30 minutes.
A year prior, my father died of lung cancer. He smoked from 1950 to 1970. I smoked one cigarette in the eighth grade. My doctor said we have to check for cancer. I still remember the phone call when the results came back. He said, “Nope, it is not cancer. We’re going to get you into a pulmonologist.”
Then it was the worst time in the world: COVID happened. I remember it clearly because my twins were graduating from high school, so we were planning a trip to Italy for them, my wife, and other people. I was watching the news and seeing all these people in Italy locked in their homes because of this new virus.
The COVID pandemic, suspected coronavirus, and struggling to see a pulmonologist
All of a sudden, it comes out that it’s spreading in China. When this whole thing started, I was in the Philippines. I ended up changing planes and spent a day in Narita, Japan. Now my doctor was saying, “You might have this coronavirus.” Of course, everything went into lockdown.
I got one of the first tests in Dallas for this disease that I did not have. I had to drive up and a nurse in a hazmat suit did the swab test. By now, it’s April and I couldn’t get into a pulmonologist until November.
Between April and November, my coughing got worse and worse. I couldn’t get a sentence out. I couldn’t speak or breathe. I was pretty miserable. I couldn’t interface with people because they immediately thought that I had COVID, when COVID was deadly, which I did not. I would say, “No, I have something else. We do not know what it is, but it is going to get cured.”
Finally seeing the pulmonologist and getting the lung cancer diagnosis
Finally, in November, right around election day, I got in with the pulmonologist at the local hospital. I went in and there were a lot of very sick people at the time because this was when COVID was at its peak. I had a lung biopsy done.
It was the day before Thanksgiving. It was 4:30 p.m., the last appointment before he shut down for the holidays. He was on one side of the room and I was on the other side of the room. He was wearing a KN95 mask and I had one. We have plastic up everywhere. He said, “We found some cancer cells.” I said, “How could that be? I have never smoked. It makes no sense.” He goes, “Don’t know. Don’t know what caused it.” Now he was guessing. Everybody typically wants an answer to how this happened. “Maybe you were around a lot of smoke.”
I asked him what we were going to do. He was going to send me to a local oncology clinic that had a lot of doctors. He said, “You’re going to have to have chemotherapy and radiation. Then we’re going to remove your lung. We have to get you this guy and that guy and another guy, and ultimately we will take your lung out,” which would have killed me.
I asked him the question that I always knew that you should ask a doctor: “What would you do if this were you?” I was waiting for him to tell me to go to Memorial Sloan Kettering or do something spectacular. He said, “I would go home and get my affairs in order if I were you,” which was devastating, but I did not take it as dire as he pointed out. I cannot say I’m a pretty positive person, but I was pretty positive about this one. I said, “We’re going to beat this.”
The most important thing that you could do, which I did, is to find somebody you trust, hopefully somebody from your family, someone you know, or someone who is highly educated in this particular area, who can advise you. I went home and I called my cousin Cindy and her husband, Lenny, who is a retired physician and has worked for the drug companies.
Getting to an NCI-designated cancer center and UT Southwestern
Lenny said, “No, you have to go to a National Cancer Institute hospital. Let’s go online and find one. UT Southwestern is right by you in Dallas. It’s one of the top hospitals.” I asked, “How do I go there?” I was thinking you needed a pathway in, somebody to recommend you, or someone to write something. He said, “You need a lung removed. Let’s search under lung and thoracic surgeons. Let’s find the chief of the department. Tomorrow morning, call his office and tell him you have been diagnosed with lung cancer and you need to see him.”
I said, “That’s it? I don’t have to have any magic? You don’t have to call? I don’t need another doctor? I don’t have to stand on my head and eat a bug?” He said, “No, this is what they do.” I never imagined that I could go to the best hospital, to the best guy, and call and say, “I need to come in.”
When I called, they asked, “What’s your insurance? What’s your diagnosis? You’re going to need this test, that test, and the other test.” I had all those tests, so they said, “You’re going to need copies of all of this stuff. How is next Tuesday at 10 o’clock?” “That is it?” “Yeah.”
I went to UT Southwestern. It was a terrible time because my daughter was having knee surgery, so my wife was there. By now, it’s the Christmas break. The kids are on break from Christmas, so she’s getting knee surgery. I said, “I will see this other surgeon with Jacqueline. We will have her take notes.”
He looked at my X-ray and immediately knew what it was. He said, “You have had this a long time. This is a big tumor.” He showed me the measurement. I said, “That is why I cannot breathe.” “Yeah, that is why you cannot breathe.”
He said, “Before I can take out that lung, you are going to need 30 chemotherapies and 30-some-odd radiations. Then we’re going to get you healthy again to make sure your other lung can sustain you before we take out the lung. Then you have to go through recovery.” I thought, “Man, this is going to be hard, but we’re going to do it.” It was right around the holidays. We have a strong family and had a good Christmas, and there was no downside to anything
Meeting the oncologist who saved my life
He set me up with an oncologist. This is the man who eventually saved my life, Dr. Ben Drapkin. He was relatively new then and probably the first doctor I ever saw who was far younger than me. I kept calling him Dr. Drapkin, but he kept referring to himself as Ben and wanted me to call him Ben. I said, “No, you’re my doctor.”
The surgeon identified the stage. He said, “I’m going to call this 3A,” but while he was looking, he said, “You know what? This is 3B, but it’s just in this lung. It has not spread, so it’s not 4.”
Each hospital has its own portal, but I have MyChart and I can see everything. I can see my test results before talking to the doctors about it. I see all my appointments in there. There are 30 chemotherapies and 30 radiations, and the surgery is three months out. I keep looking at it because every time I look, there are more and more appointments.
Then, all of a sudden, all the appointments disappeared. Right then, I get a phone call: “Doctor says you have to go in.” My wife and I went in, and he said, “Phil, from the time the surgeon, Dr. Kernstine, saw the scan and when I looked at it, it had leaped over. It has gone into your lymph nodes, your heart, and your other lung. It’s moving very fast and very aggressively. We cannot remove your lung because it’s going to go into your other lung. We cannot do radiation. It’s too close to your heart.” “Well, what are we going to do?” “We’re going to check for genetic mutations.”
At the time, I wasn’t exactly sure what that was, but I recall my cousin Cindy and Lenny were saying, “You have to have him check for genetic mutations.” All of a sudden, it has caught my attention. I had heard it before. “How do we do that?” “We have got to do another biopsy.” Back to the hospital, trying to find a pulmonologist who could do it, while they were all taking care of COVID patients.
Through luck, I was able to get in and get the biopsy done. In the meantime, he said, “We’re going to start you on chemotherapy because we have to slow this down. The mutation test takes weeks. This is going to take your life in three to four months. Unless we do something, unless we find what this is, you will be dead in three to four months.”
Facing the odds and choosing hope
This is a fantastic story. I was trying to use my analytical mind to figure out how much trouble I was in. How can I be optimistic about this? I was sitting there with my wife and said, “What are my odds? How long can I live with this?” He said, “Every cancer is different and everybody is different.” I prodded, “No, tell me the truth. With stage 4 metastatic lung cancer, what are my odds of living a long life?” Stupid question to ask, but he said, “Well, one year, 40%. Two years, 20%. Five years, 5–7% chance you will be alive in five years.” I turned to my wife and said, “It sounds like in five years, you and I are going to Tahiti to celebrate.”
I went through two different chemotherapy regimens. It wasn’t difficult in the beginning because chemo is cumulative. The first two sessions were pretty easy. From what I understand, it doesn’t become bad until the fourth session.
Learning about ROS1 and starting targeted therapy
The results from the genetic testing came back. He said, “Great news. You have ROS1.” I asked him if it was hereditary. He said, “No, it’s bad luck. Bad luck caused it. We don’t know exactly what triggers it, but a gene broke and fused with another gene, sent a signal to grow these tumors, and now you have a tumor.”
“But there is a drug, and the drug works on 80% of the people, so there’s no reason why it wouldn’t work on you. This will not cure it. It will never be cured. It’s in your lymphatic system, so you will always have it. But this drug will stop it and arrest it from doing what it has been doing — from growing like that.”
I asked him how long the drug will last. He explained, “In about 10% of the people, it falls off after a year and the cancer mutates. Another 10% in the second year. By the third year, usually the cancer mutates around it and goes, but some people have been on this drug for 10 years and are doing great.”
I asked him what happens when the cancer mutates around it. He said, “We hope there is a new drug, and there will be because they are working on drugs for this, and there’s always a new drug. I cannot tell you what is going on in all the labs across the country. But science is trying to understand this as well, and they are making great headway, so you just have to go with it.”
I take these pills — these amazingly expensive pills. Thankfully, I had good insurance. The pills cost $25,000 a month for a bottle of 60 pills. I would take them twice a day. Thankfully, I only paid $25 for my first copay, and for the next three years that I was on this drug, I did not pay.
As expected, the drug lasted about two years, then the cancer started progressing.
Radiation, waiting for progression, and the G2032R mutation
I had radiation done on my lower right lung. It was like surgery without cutting through the skin. That part of the lung is no longer functional, but the cancer is not going to grow there. The hope is that they have now eradicated the trouble spot, but maybe not. We monitored it every three months and, unfortunately, the cancer started to grow, so he said, “We need to do another biopsy, but we have to wait until it gets big enough to take a biopsy. It’s in different spots, but we need a good spot.” For about six months, I was going back every 30 days to get scans.
Eventually, the tumor size reached one centimeter and they were able to take a sample for biopsy. This is where science comes in. He said, “You have the G2032R mutation, which is a very common mutation for ROS1.” What happens is the cancer outsmarts the drug. These two genes get together and communicate to the other genes, “Hey, this is great. We can do this and we can grow,” which is what it wants to do, and the ROS1 drug stops that from happening. Then the cancer says, “You know what? We can get together like this and that drug cannot stop us.” Then it communicates on a molecular level and you have a tumor.
What we have to watch next is that this doesn’t go to my brain. In his words, he said, “The cancer will try to seek refuge in your brain.” “What do we do if it does that?” “We do radiation to your brain.”
At this point, my wife and I were trying to travel and squeeze in what we wanted to do during retirement within a year or two. One place that we decided to visit is a particular resort in Cancun called Live Aqua, which we like.
Traveling between scans and choosing a clinical trial in Boston
I would get my scans and my doctor would say, “Now we have to wait another three months.” In the car on the way back, I would say, “Okay, book Live Aqua within the next three months,” and we would book it and go to Cancun. Then we would come back and I would get the scans again. “How did I do?” “Still have to wait, still have to come back.” “Okay, let’s go again.”
Once he discovered the mutation, he said I had two options. “There is a drug that was recently approved by the FDA, but it has some unpleasant side effects and could potentially interfere with your ability to enjoy life. You and your wife are retired, but are very active, like to go to the gym, work out, and go to the beach. There is another drug that we think is as good, but with a side effect profile that is more in tune with your lifestyle. It’s on a clinical trial in Boston. You are going to have to go to Dr. Jessica Lin in Mass General.” This is where having a doctor who is doing his job matters. I said, “Fine, we are going to go with the clinical trial. What do I have to lose?”
We want to go with the best option. The best option that would give me the best quality of life was this clinical trial in Boston with Dr. Jessica Lin. My doctor, Dr. Drapkin, had done his fellowship there, by the way. He kept on referring to her as Jess, and I said, “No, Dr. Lin. I don’t go by first names with people whom I am trusting with my life.” He said, “Okay, but you’re going to have to go to Boston.” I said, “Fine. That’s fine.”
He was going to Europe for Christmas break and when he gets back, we’re going to prepare a packet and submit it to enroll me in the clinical trial. I thoughtI had about a month, but he called the next day and said, “Okay, I spoke to Jess. You’re perfect for the trial. One of the things they want to see is people who are healthy with longevity. For your age and your disease, you’re doing great. They think you can tolerate it fine and it’s a good choice for you. They’re going to call you.” I thought, “What do I have to lose?”
Enrolling in the Boston clinical trial and gaining weight
I headed to Boston the following month. I went through the exam and they said, “Okay, you’re accepted into the trial, but you have to come here every week, Monday through Thursday.” I said I could do it because I was used to it. I did it for my job early on. Now I am doing it for me. For about a month, it was every week. Then it became every other week. Then it became once a month.
One side effect that I experienced was that I started putting on a lot of weight. Over the course of a year, I put on 37 pounds. I thought it was from the drug, so I asked Dr. Lin if the drug was making me put on weight. She said no. Then I realized that during all my trips to Boston, I was living in a hotel and eating in restaurants at the hotel. Then there was this fantastic ice cream place nearby and every night, I would go over and get ice cream.
I will be in the trial for the rest of my life. I’m on this new drug. I graduated from going every week to every three months. Unless I have progression, I will be going every three months for the rest of my life.
I talked to Ben and said, “If anything ever changes, I will come see you. I want you to still be my oncologist.” He said, “No. Jess is the best doctor you can get. That’s where you need to be. You have a very, very rare and very, very aggressive disease, and they have it under control. They are, of course, part of Harvard Medical School, and its labs are working on these drugs. They have the best research team and the next drugs are going to come out of there. You want to make sure that if you need the next drug, you’re getting the next drug.”
Fulfilling the Tahiti promise and going on an 18-day cruise
When Dr. Drapkin told me that the odds of living five years would be 5–7%, I thought, “Whatever I say to her is going to set the tone for how this goes.” I could say, “Oh my God, we have to go buy a casket.” But instead I said, “In five years, we’re going to go to Tahiti to celebrate.”
Earlier this year, I hit five years, so we planned our trip to Tahiti. It was an 18-day cruise on a small ship of about 600–700 passengers. My wife and I went to Papeete and spent four days there, then we went on an 18-day cruise from Tahiti. We went through the different islands there. We went to the Marquesas. We crossed the equator. There was a big ceremony on the boat for the people who crossed for the first time. We went to Hawaii.
The trip happened to coincide with our 25th anniversary. We were married in Hawaii and sailed to LA. That is something you plan, and it takes time and money, and we were fortunate enough to have both. I told her that in five years, we were going to go to Tahiti to celebrate — and we did.
Serendipity: Meeting my oncologist on a plane after Tahiti
From LA, we had to fly back to Dallas. My daughter was going to meet us there. While on the plane, a guy walks past me. I said to my wife, “That looks like Dr. Drapkin, but much younger,” because the only time I have ever seen him was in a white coat with a stethoscope. He has headphones on, into his music, and dressed like any of us would dress when flying.
I asked the flight attendant and she checked the flight log. Sure enough, it was my oncologist. Five years ago, he told me that I was potentially going to die from this disease, but he ended up saving my life with his knowledge, stopping them from taking out the lung, knowing to look for the mutation, finding the mutation, and then finding the trial for me. He worked hard for me, so to have him on this flight was serendipity.
I walked toward him and said, “Ben Drapkin.” He looked up and said, “Yes?” I said, “Dr. Drapkin.” He said, “Yeah?” I said, “You do not recognize me?” Again, he gave me the look. I said, “You saved my life.” The blood drained from his face. He stood up and the two of us hugged. It was the most fantastic thing because he looked after me.
Afterwards, we met in baggage claim. We have a picture of all of us with my daughter. It just so happened that about a month prior, my daughter was getting her doctorate from The University of Texas in Dallas, and you have to be hooded by another member of the faculty and another doctor. She asked, “Do you think Dr. Drapkin would hood me?”
Now here we all are in Dallas. He said, “I will be honored to hood you,” because the only reason that she was able to go and get this degree — all three of my kids, the only reason they were able to get their degrees — is because they want to help children. They’re going through eight years of college and graduate school to help children because I was able to work.
I lost my life insurance through a bad series of events. There’s money there, but not enough to pay for their education. But I was able to work and pay for their education because of the work that he did, and because of it, they are hopefully going to do work for other people as well, other children, so it’s a happy ending.
Living with stage 4 cancer: Ongoing trial, frequent travel, and trusting science
It’s not over. Hopefully, there are many years ahead. The drug I’m on hasn’t been approved yet, but it has been submitted to the FDA, so hopefully, it will be approved shortly. I go to absolutely the best hospital and the best doctor for what I have.
It gets a little bit cumbersome. I put those visits on my calendar. I have them on the calendar for the rest of the year. Fortunately, I only have to go four times a year now. I buy the plane tickets and make the hotel reservations. Then I have to get up at 3 a.m., drive to the airport, and fly to Boston. I take an Uber to the hospital, get a CT scan, and then take another Uber to another part of Boston to get a brain MRI. I spend the next day sitting in a hotel room, hitting refresh on my computer until the results come in. I try to interpret the results myself.
I usually take the results and upload them into an AI tool, saying, Explain this to me the way an oncologist would explain it to a patient.” So far, it says, “This is good news. This is great news. There has been no progression.” I have tumors, but they are very, very small. They’re measured in millimeters, but they’re not growing.
One of the things that Dr. Lin discovered that was a little bit scary was something in my L3 vertebra, which is the pathway up the spine to the brain, which is the migration that lung cancer takes. This was about nine months ago. There was something on my L3 that had not been seen before. They believe it’s treated metastasis, meaning the cancer spread there, but the drug took care of it, so it’s now a dead tumor.
Retirement, supportive employer, and daily life with cancer
At this point, I’m fully retired. I miss working. I miss the people. They were absolutely fantastic. We keep in touch. I send them emails once in a while, and they want to know how I’m doing. We follow each other on Facebook. I owe a lot to my boss and the president of the company because when I got cancer, they said, “You do whatever you need to do.” This went all the way up to the C‑level of the company. They were very supportive. “We are behind you. Whatever you need to do, you do. If you don’t feel like working, do not work. If you don’t want to show up for a meeting, do not show up for a meeting. If you want to disappear for a month to recover but still get paid, you can disappear and get paid.” But I didn’t. I worked. I worked through chemotherapy. I worked with needles in my arms. I attended meetings. Because I wanted to.
But now, I don’t want to, actually. Fortunately, my wife and I can live a full life, even with a metastatic lung cancer diagnosis. Every morning, I go to the gym. I don’t do anything crazy because I can’t. My muscles have atrophied. But I can spend 30 minutes walking briskly on a treadmill. I can use the old‑guy weights and keep things from atrophying too much.
Every Monday, we go to Costco to walk around, buy chicken, have free samples, and spend $200 on stuff we don’t need. But we do it every Monday. That’s our routine. We see our kids very often. They’re always here. We travel a lot. Sometimes we go to Puerto Vallarta, rent an Airbnb, and spend the week drinking two pots of coffee, walking up and down the Malecón, and eating tacos for dinner.
We’ve gone to Tahiti, and we’re doing another bucket list trip, which is sailing on a ship that we have been on before. It’s a passenger sailing ship, but it’s like a cruise ship. It holds 200–300 people. We will sail from Barcelona to Venice, which includes all the places that we have wanted to see, so we’re going to see them together.
At some point, cancer is going to win. The cancer is never gone; it’s always there. It colors everything that you do. It’s always in the back of your mind. I asked Dr. Lin, “This drug, is this going to beat ROS1?” She said, “It’s not a cure. It’s a very good drug, but we don’t know how long it’s going to last. We’re learning how long it’s going to last from you. You’re one of the earliest patients on it.” Based on what they see, it’s going to last longer.
When Dr. Drapkin saw me, he was so happy that I was doing well. He said, “There’s going to be another drug. Yeah, it will not last, but there is going to be another drug.” But eventually, whether the other drug has side effects that affect your life or the side effects cause the end of it, cancer is going to win.
Five years ago, we thought that was it. They said I had months. It was during the start of the COVID pandemic, so you couldn’t do anything. I thought, “If we could only get another year, another two years, if I could only see my kids graduate from the University of Texas…” I wanted to see that. I did. Now I am going to see them get doctorates and master’s degrees. Never thought we would do that. Never thought we would go to Tahiti. I’m pretty fortunate. It’s pretty amazing.
I went through a lot, but I got more than most people. When I was diagnosed — and this is a calculation I always go back to — I thought I was going to die in three or four months — that was five years ago. From that point until now, roughly 300 million people in the world have died. Chances are, none of them knew they were going to die. People got sick and died. People got into accidents and died. I have nothing to feel sorry for or feel sad about.
It’s been five years and I’m still going strong at 65 years old. I’m planning on being around as long as I can. Everybody’s time comes; I’m just glad that it wasn’t five years ago. I’m trusting the science. It hasn’t failed me.
Why mental health support is essential with cancer
Mental health support is so important. You need a team. Your oncologist treats cancer, but he doesn’t treat everything else. You want to talk to him about stuff, but that’s not what he does, even with side effects. They referred me to a palliative doctor. The palliative doctor at UT Southwestern recommended Dr. Martin Howe, a cancer psychologist on staff at The University of Texas Southwestern.
I was taking a lot of gabapentin for side effects, which affects mood as well. I have been a patient of hers. We have been talking once a month for the past three to four years, and I intend to keep that going as long as I can. It helps you frame things. It’s very important to see: Is what I am feeling the effect of the drugs or the effect of me? Because they can both be understood.
We have a one‑hour appointment and I talk the whole time. She asks, “How are things going?” and I just talk. At the end, we set up another appointment. I’m their easiest patient. What I find most important is that it gives you the license to talk to yourself during that month. I could see her more often if I needed to, but once a month is fine.
When I say talk to myself, I literally mean talk to myself. During the half hour on the treadmill, that’s my mental health time. I only listen to Spanish music, but since I don’t speak Spanish, I get the rhythm, but I don’t have any story. The story is in my head. “If I had to talk to Dr. Martin Howe this afternoon, what am I going to tell her that is going on? What are all the terrible things that are happening to me because of this cancer? What are all the terrible things that I cannot do? What are all the unfair things? What are all the things that I am afraid are going to happen? What would I tell her?” She does not have to tell me anything. I just talk through it.
The following week, when I get on the treadmill, I cannot even remember all those things that were huge problems a week ago because I have gotten past them. I have dealt with them. I no longer think about them. That happens because every day, I can have these conversations with her in my mind. I can categorize the problems that I have and the things that are making me upset. Then I start to shift myself and the conversation with her to things that are making me happy, like the things that I’m grateful for and the things that are going well. You start to think about those and say, “Oh, I have to tell her this happened to me. That was fantastic. This is what’s going on with me that I can do now.”
Building a full care team: Palliative care, therapist, PCP, and dentist
You need a palliative doctor for the side effects that you are going to have. These things are second-nature to them. We talk about my bowel movements. You can have these conversations with a palliative doctor, who then he says, “Try this or try that,” or, “Let’s increase this or decrease that,” or, “I will write you a prescription for this.” Your oncologist won’t do that.
I don’t know whether a regular therapist would be the same value as a cancer therapist. The cancer therapist understands the drugs. She understands the treatment. This is all she deals with, which is an important part of it.
Your regular primary care physician is there, right along with the side effects. When I put on 37 pounds from eating too much ice cream and pasta, I had to manage my blood sugar, my blood pressure, and all these other things. Your PCP needs to treat that.
Unfortunately, I needed a good dentist. With all the drugs, my mouth became very dry, so there’s a higher chance for plaque to grow. My gums started to recede. With dental work done 25–30 years ago, if something gets underneath and a tooth breaks off, I’m going to live without that tooth. If another tooth next to that breaks off, now you have two teeth missing. I reached the point where I needed a lot of work done, which isn’t cheap. If you’re not working and don’t have company insurance, it’s not cheap.
My wife and I recently got back from Cancun. We went for dental work — not that I am recommending it to everybody. I spent 7.5 hours in a chair and got two extractions, two implants, seven crowns, and a root canal in one sitting. You need a good dentist and have to go regularly because the drugs are going to affect your teeth differently.
A mistake that I see people making is going to their oncologist for everything. The oncologist did go to medical school, but they treat cancer. The whole purpose of why we get treated is not to make us live forever. We won’t. It’s to extend our life, but with a high quality of life.
Quality of life is the most important thing. I learned that from Dr. Lin when I first started with her up in Boston. My wife and I had a trip planned, and it coincided with one of my many trips to Boston. I asked my doctor, “What should I do?” She goes, “Phil, the reason we do this treatment and go through all this is so you can do those types of vacations with your wife. We will move the appointment. Enjoy your life. That is why we do this.”
I’m a 65‑year‑old Italian from New Jersey. Psychology and therapy aren’t something that I grew up with. But if you get a diagnosis like this, you’d better talk to somebody who can help you navigate the mental health aspect. Otherwise, you take it out on your family, your job, or yourself. Or you say, “I’m going to get the most out of each day.”
Looking ahead: Future plans, bucket lists, and hopes for my daughters
Before, nothing was more than 30 days out, and then nothing was more than 90 days out. Now, it’s different. My wife and I are booking a trip for January 2027. We have the bucket list that we want to do. I never would have considered booking that far out. I will buy the insurance, but we’re confident enough that we’ll make the trip. We want to go on a cruise through the Panama Canal. When she grew up, she lived in Panama for a while, so she saw the Panama Canal as a child. We will sign the dotted line in March.
The real bucket list trip will have to wait because it’s a tough one: We want to do a trip from Hong Kong to Singapore, which goes into Vietnam and Thailand. I used to go to Hong Kong for work, and I haven’t been there since 2002 or 2003. My wife has never been there. I want to go there and I want us to see what Hong Kong is like. I have been to Singapore on business once, but I didn’t get to see anything. We’re going to do that trip in 2028. I’m not going to pay for it yet, but we are going to do that.
As far as our three daughters, I’m looking forward to seeing them graduate and begin their careers. Jackie is already seeing patients, and I get to witness her excitement when she calls me about what they were able to do for a particular patient. She runs a big part of their Medicare practice for people who come in and don’t have any money. The Callier Center has programs for them and that’s where she’s involved, especially with young kids who have disabilities. She’s very good. I see her excitement in doing this role as a resident.
The twins are still in the classroom. They have two years left before they graduate. I want to be there to see them as they begin their careers. I want to see them bring home paychecks. I want to see them pay for their first car insurance bill.
I cannot wait for their weddings. I cannot wait to see grandchildren, if they choose to get married. I think they will. I will be there. I didn’t even think that was a possibility.
Symptoms: Swollen ankle resulting from a deep vein thrombosis or blood clot, mysterious bruising, extreme weight loss, persistent shortness of breath, rattling sound coming from the throat while breathing
Symptoms: Persistent cough (months), coughing up a little blood, high fever, night sweats Treatments: Chemotherapy (4 cycles), maintenance chemotherapy (4 cycles)
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