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From Hip Pain to Metastatic Breast Cancer: How Mom and Teacher Erica Shows Up for ALL of Her Kids

From Hip Pain to Metastatic Breast Cancer: How Mom and Teacher Erica Shows Up for ALL of Her Kids

Erica lives with metastatic breast cancer. She describes herself first as an elementary PE teacher and single mom to two active kids, and secondly as a patient. She was initially diagnosed with stage 1 hormone-positive, HER2-negative breast cancer in July 2024, and believed she was finally moving back into “normal life” after chemotherapy, a double mastectomy, and reconstruction. When new, relentless pain in her hip, ribs, spine, and shoulder blade led to an ER visit, scans and a biopsy confirmed metastatic breast cancer that had spread to her bones. The news, delivered abruptly in the middle of the night, felt devastating and unreal. She spent a long time in denial, trying to process what this diagnosis might mean for her future and her family.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Today, Erica’s treatment for metastatic breast cancer includes a monthly hormone-suppressing injection and regular scans, along with integrative care, supplements, and a strict routine to support her health. She previously tried a combination of a targeted therapy and a hormone therapy drug, but the combination caused severe fatigue and low blood counts, so her oncology team adjusted the plan. Targeted radiation to a painful hip lesion around the femoral head gave her back the ability to walk without crutches, teach more comfortably, and be present in the gym again. She also manages hot flashes, tiredness, and brain fog, making daily choices to modify workouts and protect her bones while still staying as active as she safely can.

Erica H. metastatic breast cancer

Erica’s experience with metastatic breast cancer has changed every part of her life: how she parents, shows up in her classroom, and thinks about the future. Her children know she has cancer and see her as a fighter, but she works hard to shield them from the hardest moments, often crying alone in the shower or car instead of in front of them. At school, students and families surround her with cards, T-shirts, fundraisers, and a deeply felt sense of community that has eased some of the financial burden of cancer treatment.

At the center of it all is a quiet, disciplined determination. Erica organizes her days around movement, nutrition, supplements, work, faith, and time with her kids. She talks openly about scanxiety and uncertainty, while also defining hope as being there to see her children graduate, get married, and have kids of their own. For her students, she keeps repeating one message she lives out herself: you can do hard things, even when life looks very different from what you expected.

Watch Erica’s video and read the edited transcript of her story to learn more.

  • Staying connected to meaningful roles, like teaching and parenting, can help some patients with metastatic breast cancer feel more grounded and “normal” in the middle of constant medical appointments and scans.
  • Adjusting treatment plans when side effects become overwhelming is not a personal failure; it reflects how a cancer responds to therapy and the need to find an approach that supports both effectiveness and quality of life.
  • Community support from coworkers, students’ families, and strangers can ease the financial strain of metastatic breast cancer and remind patients that they do not have to navigate the experience alone.
  • A universal truth in Erica’s story is that it is possible to feel deep fear and grief and still practice gratitude, faith, and hope in the same breath.
  • She describes a powerful transformation from denial and shock after her metastatic breast cancer diagnosis to a disciplined, intentional way of living, where she structures her days around her health, her faith, and her children’s future.

  • Name: Erica H.
  • Age at Diagnosis:
    • Stage 1: 39
    • Stage 4: 41
  • Diagnosis:
    • Hormone-Positive, HER2-Negative Breast Cancer
  • Staging:
    • Stage 4 (Initially Stage 1)
  • Symptoms:
    • Stage 1: Appearance of lump in left breast
    • Stage 4: Severe pain in hip, ribs, spine, and shoulder blade
  • Treatments:
    • Surgeries: double mastectomy, reconstruction
    • Chemotherapy
    • Cold caps
    • Radiation therapy
    • Hormone therapy: aromatase inhibitor (letrozole)
    • Targeted therapy: CDK4/6 inhibitor (ribociclib)
    • Integrative care
Erica H. metastatic breast cancer
Erica H. metastatic breast cancer
Erica H. metastatic breast cancer
Erica H. metastatic breast cancer
Erica H. metastatic breast cancer
Erica H. metastatic breast cancer
Erica H. metastatic breast cancer

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

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



My metastatic breast cancer diagnosis and teaching career

My name is Erica. I was diagnosed the first time with stage 1 hormone-positive breast cancer, HER2-negative, in July of 2024. The second time I was diagnosed was on October 31st, 2025, with stage 4 metastatic breast cancer, same hormone-positive, HER2-negative. 

I am an elementary PE teacher. I have been doing that for about 12 years now.

A day in the life: Teaching with metastatic breast cancer

A typical morning: I am feeling good enough right now that I like to go to the gym to work out, then come back and get my two kiddos ready for school. They get to go to school with me, so that’s perfect.

I go to my elementary school, and when I get there, I am in charge of setting up the gym for everyday activities. We do different things. Another PE teacher does the parent drop-off while I set up. We have some fifth graders who help us set up every day for PE.

We have ten total classes a day, and they are 30 minutes apiece. Everyone gets to have PE every day at our school, which is awesome. I love that.

After that, I coach basketball. That just ended, but I did coach my daughter and my son. That was my sport too, so I coached both of them. Now we are switching over into the spring sports, so now I am their taxi driver to all their different sports.

Throughout the day, I take different vitamins and supplements four times a day. I am taking a lot of different things. I have another medication, the hormone suppressant that I get injected with every month at my oncologist’s office.

Monthly hormone injections and bloodwork

Usually, when I go get my injections, they do blood work for me every single month, too. Before I get that injection, I get my blood work done to make sure that my levels are still good. Then I get my injection.

I try to do that before school because I’ve missed a lot of school, and I don’t want to miss it if I don’t have to. So I usually go straight to school from there.

This injection hasn’t been very bad. The injection itself isn’t bad. It is sore; they put something on, and they numb me before they do it, but I don’t really have side effects that hinder me from doing my job or anything like that.

Since it’s a hormone suppressant, I have hot flashes. That’s the biggest thing that’s bothering me right now. I haven’t had a ton of joint pain. When I was on ribociclib, I did notice my hair was thinning again and things like that. But I’m not on that anymore, and I’m not as tired. When I was on that, my white blood cell counts were very low, so I was really exhausted.

By just doing this hormone suppressant alone, I’m not having as bad a set of side effects as I was before. I’m lucky that I’m feeling as good as I feel right now. I feel so good.

How my stage 4 diagnosis changed my daily life

When I was first diagnosed, I was in a ton of pain. It was super scary, obviously. There were days when I was thinking, “How am I going to do this?” I was in so much pain.

I had a lesion on my right hip, right where the femoral head goes into the hip socket, and that was causing me a lot of pain. Some days I needed crutches. I couldn’t walk, and I was thinking that was going to be my new normal, and hoping that it wasn’t.

Luckily, I went and met with a radiologist, and they said they thought they could do four sessions and that would be able to help me. That was targeted therapy. Since I was in so much pain, I decided to do that.

My last session was on Christmas Eve. It actually made a difference really quickly. They said it could take weeks, but I was lucky that it did something quickly for me. I was able to walk, and I didn’t have that pain. I had been limping, and everybody was worried about me and asking my kids questions. It looked painful. It was painful. It was hard to walk.

I had to sit down a lot while I was teaching instead of being active like I usually am. Luckily, that has changed. I’m very thankful that that worked out for me.

Why I continued teaching during treatment

I’ve always been an active person, and I know that breast cancer slowed me down. My kids go to the school too. If I just sat at home by myself, that is when my brain starts running with different thoughts. I like to stay busy.

I love my job, and I love seeing my students every day. They have been awesome. They have sent me so many cards, and they are always checking on me. I don’t like them to worry about me either.

I’m in a hard position with the elementary kiddos because they know that I have it, and they’ve said some really silly things to me. They hate that I have it, but I do feel like I’ve been able to show up and still be a good PE teacher.

I do have a little bit of brain fog. If I’m trying to talk to classes about different things that we are doing that day, I’ll lose my train of thought more regularly than I used to. But I need to keep a routine. It keeps me more positive, and I just like being around them.

If I sat at home and did not work, I think that would cause me to spiral a little bit and just sit with what’s going on.

Working around germs during metastatic breast cancer treatment

My doctors, my oncologists, were really concerned about me being around germs. They said that I could wear a mask if I wanted to, to protect myself. I feel like sickness has been so wild lately.

Everybody has been sick. My daughter had flu A, and then a couple of weeks later, she got flu B. In between that, my son had strep. So not only do all the kids in the elementary school have germs, but my own kids do too. Somehow, I have been able to avoid that. I haven’t gotten the sickness, which I’m really surprised about.

They were really worried about that for me. I do think that some of the supplements that I’ve been taking have helped me stay healthy during this. I think that being in the sun and being outside and doing things like that helps keep my natural immune system up too.

Walking into the gym each day with my students

We get every class for 30 minutes a day, so it’s something new every 30 minutes. We are not with the same students all day, and every class is something different. We move on pretty quickly.

I’ve been doing this for so long that I don’t put too much thought into it. This is what I’ve done, so I go to work and do what I normally do. It hasn’t been too different. Now that the kiddos have seen me able to walk without limping, there haven’t been as many questions as there were in the beginning.

They tell me they hope that I feel better and say they are sorry that I have cancer. I had one student who told me that his grandma had what I had, but they had to put her down. He didn’t mean it like that; it was just coming from the mouths of babes. They all mean well.

When I go in, it’s just another day for me. I’m doing what I love to do, and I’m thankful that I have a job that I love. My coworkers are great, and the whole school system has really pulled together for me. They have supported me in different raffles and other ways. They’ve been amazing. I’m lucky with the school district I’m in and with all the students and their families.

Community support, fundraisers, and the financial burden of metastatic breast cancer

One of my coworkers is one of the high school football coaches, and I teach some of the sons of the football coaches. The head football coach and the team always have a breast cancer awareness game. They did fundraising for me that night.

They sold t-shirts that everyone in the district or anyone at all could buy. People bought a bunch of shirts, and they showed me support that way. Everyone in the school was wearing those shirts one day. It was pretty emotional to see that support.

That was the first time around. The second time around, they set up a GoFundMe page for me. It’s shocking to me, the amount that they raised for me, because treatment is so expensive. I never realized how expensive it can be. I’m a single mom and a teacher, so it was very helpful.

Strangers and everybody in the community have shown up. I don’t know how I would have done it without them. My integrative doctor has told me about getting out of fight-or-flight mode. I asked how I was supposed to get out of that when I am thinking about fighting incurable metastatic breast cancer.

I think taking that financial burden off of me has helped me a ton.

How teaching helps me feel normal

Teaching has absolutely helped me. It makes me feel normal. I get to do the things that I love, and I get to see my kids at school interacting and being normal. It makes me forget about cancer, especially when I feel good.

When I was limping, that was a constant reminder. Even just transitioning kids from one class to the next was really tough. Now that I’m feeling much better after radiation and everything, I’ve been able to live my normal life again.

The hidden discipline behind living with metastatic breast cancer

Right now, I have to be so disciplined. People always say, “You’re so strong,” and I do feel like I’m strong, but I don’t feel like I have a choice with my two kiddos.

I am on a special diet, and I take different supplements four times a day. I’m trying to move my body every day. I’m trying to get in the sunlight every single day. I’m trying to keep my house clean, do the normal chores, and take my kids to practices.

It’s very time-consuming to get all the things in to make myself as healthy as I can, so I can try to keep my cancer stable or even shrink the tumors. I have to be very disciplined. I am tired, and I don’t want to work out, but I know if I keep my body strong, I am giving myself a better chance.

I’m not drinking sugary drinks anymore. I’ve been on a keto diet, which is hard for me — no snacks or coffees like I used to have all the time. I have to be really disciplined, and it’s really, really tough.

Finding motivation in my children

My kids are my motivation. They are why I do all of this. I want to see them grow up, and I just want to be here for them. That is my motivation.

I have a ten-year-old girl and an eight-year-old boy. Their birthdays are both in April, so next month she will be 11, and my son will be 9.

My first symptoms and path to my metastatic breast cancer diagnosis

I finished chemotherapy in February of 2025, and I had my exchange surgery because I had a double mastectomy. I had to wait a while to work out, maybe six weeks. After that, I was working out and started to get pain in my shoulder blade and in my hip.

I blew them off. I thought I had injured them somehow from working out. That went on and off for a couple of months. I couldn’t figure out why it wasn’t getting better or what I did to hurt it. Metastatic breast cancer never even crossed my mind.

The pain got pretty bad, and I was sick at a certain time, too. I wondered why I couldn’t get rid of this sickness. My body was aching so badly, and I could not figure out what was happening. The pain kept getting worse and would not go away. Even sitting hurt.

My boyfriend saw me crying because of the pain and said, “We’re going in. We’re going to at least get an X-ray or see what’s going on.” We went to the ER and sat there. We didn’t get checked out until probably 3 a.m. We went in around 11. I was so tired and delusional.

The doctor finally came in. He didn’t really have the best bedside manner and immediately said, “Yeah, it’s all over. We’re assuming it’s metastatic breast cancer.” I asked if he was sure and why he thought that. He said, “With your history.”

I was still not believing that was true. I thought there was no way. We were looking up other causes, like lesions, which could be something else. It wouldn’t have to be that. But they admitted me and did all the scans.

They did CT scans and MRIs with and without contrast. I was in so much pain during all that. They had me on all kinds of pain medications to try to keep me comfortable.

That’s how I found out. That’s what they said there. While I was admitted, they did a biopsy, and that confirmed it. It was very overwhelming and very hard to swallow that it was really happening. I never expected that. I feel like I’m one of the healthiest people I know. I never expected that, but here I am now.

Hearing the official metastatic breast cancer diagnosis

I was in denial. I didn’t believe it. It took me a long time to actually sit with that and cry about it and mourn that this is what is happening now.

I didn’t know what that meant. If you Google it, it’s very scary. When I first found out, it was bad. I was devastated. My whole family was devastated. We thought it was dire. I was thinking it was going to be a short period of time that I would be here. I didn’t know.

It was very scary. I feel like I just numbed out about it. It was really hard to accept.

How far the cancer spread

I had it on my shoulder blade. I had it on my femur. I had it in some places on my ribs. I had been having rib pain, too, and they found I had a broken rib from the lesions.

I had it on my ribs, my sternum, my spine, my femur, and my shoulder blade. My shoulder blade was causing me a ton of pain, too. Somehow, I didn’t have radiation on that one, but I haven’t felt that pain since I was in the hospital when I was first diagnosed. I don’t know why, but I’ll take it. I don’t feel that pain anymore.

All my treatments, from my initial stage 1 breast cancer to now

When I was first treated, I did four rounds of chemotherapy. I don’t know if that’s why I have these little pieces everywhere. I did a cold cap, so my hair’s still kind of wild, but I did cold capping during chemo.

They wanted to put me on a hormone suppressant, tamoxifen. I was on the fence about that and trying to decide. I ended up being diagnosed with metastatic breast cancer before I started taking that. That always makes me wonder if that’s what caused it, but some people have taken it and still had it come back.

There is no real right answer. I’m not going to blame myself for that because that would be even worse for me. I hadn’t started tamoxifen yet because I had heard about other people getting cancer from that as well. It’s a lot to take in and to know what to do. I had no idea, and I was trusting my doctors and trying to see what to do.

After that, when I went back, I had the same oncologist. My sister, right after I finished chemotherapy, was diagnosed with breast cancer as well. She had triple-negative breast cancer, so a different kind than mine, but we both have the same oncologist.

I went back in, and they put me on ribociclib and letrozole. I was not handling that combo well. It was making my numbers drop completely, so they took me off of that.

I am still getting the hormone suppressant injection every month. I have the option to either get my ovaries out or continue the shot. Right now, I’m doing the shot, and my oncologist is on board with continuing this since I’m stable. We’ll probably move on to something else if it shows progression.

Her goal for me is to put the cancer in the trunk. She says it’s always going to try to get back into the driver’s seat, and we just want to keep putting it back in the trunk. That’s our goal.

My treatment schedule around teaching and current side effects

Once a month, or every 28 days, I go get my injection and my blood work. I don’t have to miss school because I schedule that before school. My school doesn’t start until around 9:00, so I have time.

Every Thursday, I go to my integrative doctor and do different supplements and treatments with him. I get adjusted lightly because I have a risk of fractures due to my lesions. I go to him every week, every Thursday. I miss about an hour of school, but my co-teachers cover for me during that time. That’s kind of my plan period. I usually come in during the middle of my daughter’s class after that.

Every three months, I go for my scans. I do have to take off for that. I get different scans to make sure there isn’t progression or to see if there is progression.

Side effects right now, honestly, have not been that bad aside from the hot flashes and being tired. Then I think about how I’m not the same as I used to be. I can’t do the same things. I go to the same gym, but I have to modify a lot. I can’t do all the jumping because I could fracture something due to the lesions.

I’m tired, and the hot flashes make me not get as much sleep. The brain fog makes me feel like I’m not as sharp as I used to be, and that might be from all the medications and the chemo. But overall, I am feeling pretty good right now, and I feel blessed to feel this well.

My thoughts on clinical trials and future treatment options

The only clinical trial they’ve wanted to try with me so far was just a kind of testing. It wasn’t a new drug; it was a different way to test it. I opted out of taking that because I would have had to stay on the combination of ribociclib and letrozole, and I had gone off that anyway because it wasn’t working well for me.

I haven’t been in any trials yet. There is always that option, and I’m open to those things. I feel like even from when I was diagnosed to when my sister got diagnosed, there had already been advances. She was doing different things that I didn’t have the opportunity to do because they weren’t available yet. It’s wild that it’s progressing that fast.

There is always that option, but my oncologist hasn’t found one that fits me right now.

Coping with hard days and mental health

I do feel like I’m a positive person, but I am human. I definitely have rough days. It is hard. That’s why I try to keep myself busy. Being around all these little kiddos keeps me in a better mood.

I do have days where I break down, and it consumes me, but I try not to sit in that. I want to live for the day that I have and try to be grateful.

I’m 41 years old and was diagnosed with metastatic breast cancer at this age, thinking that I’m healthy, and especially thinking I was moving on from having the initial stage 1 breast cancer and that my life would finally go back to normal — and it didn’t. Now this is my new normal, and it’s tough and overwhelming a lot of the time.

I try my best not to sit in it. I believe in God, and that helps me a lot. My faith gives me hope, so that helps me.

How metastatic breast cancer changed my roles as mom, teacher, daughter, and girlfriend

This part makes me emotional. I used to be a high school basketball coach. I’ve been coaching my little ones, and my goal was to get back to coaching high school again. But I worry — am I going to be able to? Am I not going to be able to walk again? I don’t know what’s in the future, so I worry about that.

I am divorced, and about two weeks after I started dating my boyfriend, I was first diagnosed with breast cancer. He hung around, we got through it, and then we celebrated in Mexico. Then I found out I had metastatic breast cancer.

That is hard for me to process as a girlfriend because I want to possibly get married again. He has two young kids as well. I wonder if I even want to put them through that if I might not be here. Those thoughts go through my head.

My parents have been through so much because of this — my sister being diagnosed, me being diagnosed, and me being diagnosed again. That’s a lot of stress on them.

I hate that they’re worried about me. I want them to live their retired life and enjoy themselves, not worry about me. But I know I would worry about my kids, too, so I get it.

My kids, I don’t think they know how serious this is, and I don’t really want them to. They just know their mom as a fighter and think I’m going to beat it again. I want them to think that. This is nothing a little kid should have to think about.

A lot of things I want to do, I’m nervous about doing now. Even going on a field trip with my daughter — the fifth grade gets to go on a Smoky Mountain field trip to go hiking, and I’m going to be a chaperone. My principal said we might need to get somebody else just in case I’m not able to do it. That is hard.

I want to be able to do those things with my kids and have those memories with them. It has changed everything.

Talking to my kids about cancer and protecting their childhood

I bring my kids up in church, too, so I think they have that faith. We pray every night about things like that, and I think that gives them a little comfort. If something were to happen to me, they believe in heaven, so I think that helps them.

I think I’ve been able to hide the hardest parts from them. They haven’t seen me on really hard days. I try to keep that from them. I cry in the shower and in the car, but I don’t try to let them know.

They see me doing well right now. I feel great, so they’re not seeing a lot of the hard parts. I’m going to try to continue to do that for now.

Scanxiety, stable breast cancer, and tumor shrinkage

There has been no growth. I’m stable, and there has been some shrinkage, which makes me feel great. That’s a positive thing.

Since I came off ribociclib and letrozole, my oncologist wasn’t sure how my scans would look, but she was happy with them. She told me to keep going with this plan.

Scanxiety is real. I thought I was fine. We were driving to the hospital, and as soon as we got there, I just lost it. I didn’t realize I was keeping that in. I think I even hid it from myself.

Once we pulled up, it hit me: what do you do if it does progress? I don’t know yet. I know that happens for so many people. It is in the back of my mind, but I try to push that aside and live for the day.

What hope means to me now

Hope for me is seeing my kids graduate, seeing them get married, and seeing them have kids. That’s my hope.

I’m going to do everything I can to be able to do that. I know I don’t have the final say, but I’m definitely going to try. That is what I live for, and that is why I am so strict about everything that I do.

It’s hard, but it’s worth it. That is my hope.

Life lessons I want my children and students to learn

For my students, I always tell them they can do hard things, and I want them to believe that. Things are hard, but the reward of seeing your hard work pay off is worth it.

I want them to believe in themselves and know that they can do hard things. That is what I want to leave them with.

How metastatic breast cancer changed my view of people

I’m such an introvert, so it has surprised me how much people care and how many good people there are out there. I’ve been blown away.

It makes me not want to be as much of an introvert because there is so much good out there. I wish I could do for others what people have done for me. It’s been amazing. It’s wild to me.

I really love people now, even though I’m an introvert.


Erica H. metastatic breast cancer
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Erica H. metastatic breast cancer

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Symptoms: Stage 1: appearance of lump in left breast; Stage 4: severe pain in hip, ribs, spine, and shoulder blade

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Astrocytoma Brain Cancer Diffuse Intrinsic Pontine Glioma Glioma Patient Stories

LeeAnn Found Meaning After Her Adult Diffuse Intrinsic Pontine Glioma (DIPG) Brain Tumor Diagnosis

LeeAnn Found Meaning in Her Adult Diffuse Intrinsic Pontine Glioma (DIPG) Brain Tumor Diagnosis

When LeeAnn was diagnosed with an adult diffuse intrinsic pontine glioma (DIPG) brain tumor at 44, she was a mom juggling a five-year-old daughter and a newborn son. What started as subtle facial tingling and hard-to-describe vision changes during pregnancy was initially brushed off as a normal part of being in her mid-30s and pregnant, too. Only after she drove herself to a postpartum appointment and realized she was seeing the road through a “kaleidoscope” did her OB-GYN recognize the seriousness of her double vision and urgently refer her to a neurologist. An MRI the day after Christmas revealed a tumor on her brainstem, and suddenly LeeAnn’s world shifted.

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The first phone call about the MRI results came from a physician she had never met. It was short, clinical, and transactional, delivered without checking if she was alone, had support, or could write down unfamiliar medical terms. Soon after, an oncologist explained that DIPG is a very rare and aggressive kind of brain tumor that’s usually seen in children. A second-opinion visit at a major cancer center left her feeling even more devastated; the physician told her the tumor would “kill” her and that she might have about five years with treatment. She walked out feeling robbed of a future with her children.

LeeAnn T. brain cancer

Instead of accepting that timeline, LeeAnn pushed for more information about her brain tumor. She sought out a neurosurgeon experienced in brainstem biopsies, despite being warned about the risks. The biopsy confirmed a grade 2 astrocytoma and a DIPG in her brainstem, and a local tumor board recommended radiation. LeeAnn underwent 36 radiation treatments to her brainstem, and follow-up imaging showed her tumor had shrunk significantly. She then entered observation mode and, eventually, remission with regular MRIs.

Surprisingly, remission was when she struggled the most. LeeAnn describes bitterness and fear as she tried to “re-assimilate” into a life that would never be the same. She focused on what cancer taught her: slowing down, staying present with her kids, writing down life lessons for them, and becoming more compassionate toward other people’s invisible burdens.

Now more than 11 years out from her adult DIPG brain tumor diagnosis, LeeAnn has watched her son grow into an 11-year-old and her now-16-year-old daughter approach high school graduation. She moved from healthcare marketing into higher education marketing, launched her own consulting business, and wrote a book, Finding the Rainbow: The Other Side of a Cancer Journey. Hearing a doctor finally say her prognosis is “unknown” once felt terrifying, but she has come to embrace it as a leveling truth: none of us has an expiration date. For LeeAnn, that “unknown” has become permission to live fully in the present.

Watch LeeAnn’s video above or scroll down to browse the edited transcript of her interview to learn more about her story.

  • Subtle symptoms like facial tingling and double vision during pregnancy can signal something serious, and trusting your instincts when things feel “off” can be lifesaving.
  • A rare, typically pediatric diagnosis, DIPG does not define a person’s worth or limit their right to advocate for more information, second opinions, and safer treatment options.
  • How a diagnosis is delivered matters: patients deserve compassionate communication, time to process, and clear guidance (including when not to Google) rather than rushed, transactional phone calls.
  • LeeAnn’s experience shows that remission does not necessarily mean “back to normal”; many people struggle after treatment, as they live with long-term uncertainty, fear, and both visible and invisible scars.
  • LeeAnn describes a powerful transformation from asking, “Why did this happen to me?” to asking, “What can this experience teach me?” This was a mindset shift that helped her find meaning, deepen compassion, and rebuild a life that feels more aligned with what makes her come alive.

  • Name: LeeAnn T.
  • Age at Diagnosis:
    • 33
  • Diagnosis:
    • Brain Tumor (Diffuse Intrinsic Pontine Glioma or DIPG)
  • Grading:
    • Grade 2
  • Symptoms:
    • Facial tingling
    • Double vision
  • Treatment:
    • Radiation therapy
LeeAnn T. DIPG brain tumor
LeeAnn T. DIPG brain tumor
LeeAnn T. DIPG brain tumor
LeeAnn T. DIPG brain tumor
LeeAnn T. DIPG brain tumor
LeeAnn T. DIPG brain tumor

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.



Introduction

I’m LeeAnn. I am 44 years old. In 2014, I was diagnosed with a type of brain tumor called a diffuse intrinsic pontine glioma (DIPG).

Central Pennsylvania life and work

I’m in central Pennsylvania. I lived in Ohio before this.

I work for Penn State. That’s why I live in central Pennsylvania.

My DIPG brain tumor diagnosis while I was pregnant

So my story really begins, I like to say, with my children. At the time this all started, I had a five-year-old daughter, and I was about seven or eight months pregnant with my second child, my son, who is now 11. But toward the end of my pregnancy, I noticed two things were happening. One was that I had a really specific tingling sensation on one side of my face, and it felt like water kind of dripping on the inside. That was unusual. I hadn’t experienced that with my pregnancy with my daughter. So I remember talking to my OB physicians about it, and they said that it could be common in pregnancy. I was considered a late or an older pregnancy because I was in my mid-30s at that point, but they weren’t too concerned about it.

The other thing that I noticed in my second pregnancy, around the same time, was a little bit of a vision change, and I noticed it enough that I went to the eye doctor just to see if anything was changing. It was really hard to describe. It was subtle, but it was noticeable enough that I went to the eye doctor, and that exam showed that everything seemed fine. They said, “If it gets worse, you can come back and see us.”

I hadn’t put the tingling sensation and the vision changes together. For some reason, I just didn’t say anything to my OB-GYN doctors about the vision changes. After I had my son, I remember driving myself to my postpartum checkup with my OB-GYN. As I was driving, it felt like I was looking through a kaleidoscope. It was very strange and concerning, and I hadn’t noticed it until I made the drive to that appointment, because I was at home taking care of my son, who was a newborn, and so I wasn’t driving, and I wasn’t really leaving the house much. Around the house, I was fine, but when I left home and went to that appointment, I noticed that something was really wrong with my vision.

I went to that OB-GYN appointment, and she said to me at the end of the appointment, “Everything looks great. You look good, and it sounds like the baby’s all good.” I said, “Yes, there is this one thing that I’m noticing: my vision seems off; something seems wrong.” She said, “What does it seem like?” I said, “It feels like I’m seeing double.” Her face just kind of fell, and she said, “We need to get you to a neurologist now, because that is not good if you’re seeing double.” That led me to a neurologist later that week, I think it was, and that individual still couldn’t tell what was really going on with me.

He did a physical exam, and everything seemed fine, but he said, “Because of this vision change, you really need to have an MRI.” The day after Christmas that year, I went to have the MRI. I was really thinking that this was nothing, that this was maybe something left over from pregnancy or some weird hormone stuff. But I got a call about an hour after I had the MRI at the hospital, and the neurologist on call told me over the phone that the MRI picked up what looked to be a glioma on my brainstem and that she thought it was very treatable, but that I would need to see an oncologist really quickly. That led me to the oncology appointment the following Monday. That oncologist said, “Based on the MRI, this is a very rare type of brain tumor. It is more often diagnosed in children, and when it is diagnosed in children, it is often a very aggressive tumor. Brain tumors in children are often given, sadly, months or possibly years with treatment to live. DIPG is the name of that tumor.”

Getting a life-changing brain tumor diagnosis by phone

After the MRI, when I had it done, I really wasn’t expecting anything to come back that was serious. I really thought this was just something related to the pregnancy. To have the physician, whom I had never met, call me and give me that news over the phone was very jarring. I tell people now, “If you’re waiting for results after having any type of scan and the phone rings, before that moment happens, really try to brace yourself for any type of news that a physician may tell you over the phone after any type of imaging that you may have done.”

I like to advise people to have someone with them if the phone rings, and they are getting some news. I would advise them to take their time with the phone call, write down any terms that you’re not familiar with, ask them to spell everything for you, and see if you can have someone with you in that moment. Because when I got the phone call, I didn’t have any of those things. I wasn’t expecting to get a call, much less one that was really life-changing news. That physician, in that moment, looking back now, I think there were a million ways that physician could have given me that diagnosis. She could have asked me, “Do you have someone with you? Do you need to sit down? Do you have a piece of paper and a pencil or a pen handy, or a computer that you can type these words down? They’re not going to be familiar to you.”

I wish she had told me to stay off the internet, because the phone call was very short. It was all business. It was, “There seems to be a glioma on your brainstem. I think this is treatable. You are going to need to see an oncologist. I can help you get a referral there. Do you have any questions for me?”

I was really floored by the whole conversation. I didn’t know what a glioma was. I didn’t understand the gravity of that news. I knew it was serious when she said “oncologist.” I knew that word, and I knew that was serious. But I was so stunned at hearing this that it kind of stunned me into silence. Looking back on this, this was a physician whom I had never met, and I never saw that physician after that phone call. That was the only time that the physician had communicated with me. Looking back, there were definitely some things that I think the individual got really wrong with giving that news. I hope other physicians do a better job. I’m sure that they do, but I have to believe that some still see it as very transactional and don’t really think about the impact that could have for someone who’s receiving that news.

A rare adult DIPG brain tumor, and a devastating second opinion

My oncologist told me that this is a very rare type of brain tumor. It’s often diagnosed in children, not adults. He was recommending that I meet with a neurosurgeon locally to get his thoughts on this tumor type. I met with that individual. He agreed that this is very rare and that it’s often diagnosed in children, very rarely in adults. He recommended that I get a second opinion, and he helped me get an appointment at one of the best cancer centers in the world, actually. Maybe a week later, I took the out-of-town trip to go see this state-of-the-art, innovative, best-in-class cancer center.

I have to tell you that when I went for that second appointment, the physician walked in. She didn’t look at me. She washed her hands, and she asked me, “What brings you here today?” I was confused at the question because my neurosurgeon made it sound like he had had a whole conversation with her about my case and that he worked with her to get me in in a really short period of time. So when she asked me what I was there for, I felt really thrown by that question. I thought she would know me better or understand why I was there.

When I explained, “I’m here for a second opinion on a DIPG diagnosis,” she caught up pretty quickly and said, “Oh, okay, I remember, I understand.” Again, that visit felt very cold. It felt very sterile. It actually felt kind of rushed. She told me that I could go home and have radiation therapy. I did not have to go to that center for therapy. My local hospital had the same linear accelerator that they had. There was no clinical trial at the time that I would be eligible for. So really, my best shot at this was to go home and get my treatment.

I asked the physician, “What do you think my prognosis is?” I remember her biting her lip and saying, “Not good.” I said, “Will this kill me?” She didn’t hesitate. She said, “Oh my, yes.” I must have looked stunned because, of course, I went on the internet, and, of course, I Googled this. But I also knew not to really trust what I was seeing on the internet, that every patient is different, every case is different. I tried very hard not to focus on the worst possible outcome for myself. I was really hoping that she would tell me, “Actually, it’s hard to predict your outcome,” or, “We just don’t know enough about this tumor type,” or, “It’s so rare altogether.”

And it’s even more rare for adults that it’s difficult for us to say. But for her to definitively say, “This is going to kill you.” My next question to her was, “When? How much time do I have? Is it months? Is it years?” She said, “It’s hard to say. You might have five years with treatment. I’ve seen that happen.” I said, “What about ten years?” She said, “Ten, I can’t guarantee that. I don’t have a crystal ball. It’s hard to say.”

For me, as the patient, when you start putting timelines on things, and you start thinking about milestone moments, in my mind, I was thinking, “Okay, in ten years, my daughter won’t even be in high school. I won’t get to see her graduate, let alone get to high school. My son, who is a newborn, will be finishing up elementary school.” You start going through these milestone moments that you may not get to see. In that moment, when I heard that this was terminal and it likely would only be five years for me, the best way I could describe that feeling was it felt like I had just been robbed blind. I had no idea that that type of prognosis was coming. I did not expect to hear it from a physician at one of the best cancer institutes in the world. I felt really defeated in that moment. I remember sinking into that exam chair, with the terrible neon lights above, and just feeling so defeated already, and I hadn’t even started this battle yet.

Choosing a brainstem biopsy and radiation for my brain tumor

Somehow, I got myself together, came home, and really just had a shift in my attitude. I thought, “I’m not going to go by what that physician told me. That’s one physician. I’m one person. I don’t think that I have an expiration date. I certainly don’t feel like it’s going to be on that timeline. Maybe it will be, but I feel like I need more information.” We were going by an MRI, and MRIs are very accurate, I understand that, but that’s when I started looking into biopsy options for the tumor, because I really wanted to make sure, before I went ahead with radiation — which you can’t undo — and you really only have one opportunity with my tumor type to have radiation therapy. You cannot go in and keep radiating that same area.

For me, it was very important to have all the information I needed to move forward with the decision for radiation therapy. I found another physician who was doing biopsies on the brainstem regularly. He was doing them regularly with success. I moved forward against the advice of a lot of people who told me that it’s just way too risky, it’s way too dangerous, the brainstem is highly sensitive, and we really don’t advise that you have the biopsy. But I felt personally that I needed that information. I did have a brainstem biopsy done.

The biopsy confirmed what was in the MRI. It told me that it was a grade two astrocytoma, and it was a diffuse intrinsic pontine glioma, meaning it was in my brainstem. I presented that information to my local hospital. The tumor board at the hospital met, and they decided, “Yes, the next best step for you is radiation therapy.” In the spring of 2015, I had 36 radiation therapy treatments to the brainstem. I had a follow-up MRI, and the MRI mercifully showed that it had helped shrink the glioma significantly. From there, I was placed in observation mode, which meant that I would have to go every six months to have an MRI to see if there was any change in the tumor.

Going into remission and the hidden emotional toll

After months and then years of this, eventually a physician told me that I was in remission. This is now in remission. Now I have an MRI every two years to monitor the glioma. But I have to say that in my journey, that period of remission was actually when I struggled the most, and I did not expect that. 

People think that the hardest part of the battle is getting through treatment, and that is a very significant part of the cancer journey. But for me, I wasn’t expecting to struggle as much as I did in remission. When you think of the word remission, you often think of celebration and that it’s all behind you. But I realized quickly that it was never going to be behind me. It was now a forever thing in my life, and it was really hard for me to navigate and re-assimilate back into my old life, knowing that it would never be the same as it was before this, and learning to live with having this every day and managing all of the anxiety and the fear that you carry as a cancer survivor.

Finding meaning and gratitude after cancer

I think what really helped me — like I said, in remission, I still felt very bitter — I was asking myself a lot, “Why did this happen to me? Why did I have to go through this as a young mom with two children at home? Why me?”

I started asking the question differently. I started asking, “Why did this thing happen to me?” — with the emphasis on “this.” What was this meant to show me that my everyday living wasn’t teaching me? When I started really thinking about that question, that changed my outlook completely. I started realizing that one thing cancer will do for you, for sure, is slow you down. It will command your attention like nothing else can in your life, because you’re fighting for your life.

When I look back now at that period, I realize that I did things that I probably would never take the time to do, but I did them because I was really trying to stay present and trying to ground myself in the blessings of my life. I took time to think about who made an impact in my life up until that point and why.

What did they teach me? I also thought a lot about what I could share with my children now that I want them to know, in case I’m not here someday to teach them — whether it’s this is how you cook, this is how you make friends, this is what to look for in a future partner, this is what to do when you’re having trouble with your friends or your family, this is how you manage conflict. I know for sure that I would not have thought about those things as much as I did had I not been facing my mortality, thinking about what would happen if I weren’t here for them someday. That was actually a great blessing that I found that cancer gave me that probably nothing else would.

I also realized that cancer made me become a much more compassionate individual. I already considered myself to be an empathetic person, but it changed entirely for me. Now I feel like I’m someone who lives with this invisible scar. To meet me, you probably would have no idea that I had a brainstem biopsy, that I went through brain surgery, that I went through radiation to my brainstem, that I’m a brain tumor survivor. But one of the lingering symptoms for me is that I still struggle with my vision.

Living with lingering vision changes and invisible scars

I have now gone through two rounds of vision therapy. It’s gotten better, but it’s one of those symptoms that will just never really change for me. It might get a little better, but it will never be back to where it was. I feel like now, if I’m carrying this, then I can only imagine what other people are carrying — that everybody has something, something deeply painful, because we’re all human and we can’t escape life without, unfortunately, some deeply painful moments.

Knowing this now, I really try to think about what other people might be carrying and not worry so much if they’re rude to me or if they’re unkind. I now know that everyone’s carrying something invisible about them because I know that for myself, and I can only imagine that that’s true for other people.

Redefining purpose and what it means to come alive

The other great lesson that stayed with me is a quote by Howard Thurman, because I really think he said it best. When you’re thinking about your purpose in this life — what you’re meant to do, what you’re called to do — he says, “Don’t ask yourself what the world needs. Ask yourself what makes you come alive, because what the world needs are more people who have come alive.” Truly, I strive to do that every day. I think about what lights me up and what fills me up.

It doesn’t have to be big, extravagant things. It could be something as simple as just taking a break and getting outside for a walk or a jog, or connecting with my kids, or taking time with my pets. Simple things can really fill your cup. I really try to spend as much of my time doing those things and being around those people that give me really good energy and light me up and make me come alive.

Surpassing milestones I thought I would never see

When I think about the milestones that I was afraid I would miss, and I see myself now meeting those milestones, seeing those things happen — seeing that my daughter now will be a junior in high school next year, she graduates in two years — that’s a moment that I thought I would not get to see. It’s all extra blessings. It’s all extra special to me because those were moments that I thought I would not get to see, that I would not live to see. It makes them even more special.

Embracing an unknown prognosis and focusing on the present

One of the things that really changed my attitude toward all of this was when I was in observation mode and having the MRIs. I would always ask the physician, “What is my prognosis?” They hated that question because they didn’t know how to answer it. They really, truly didn’t know. At one point, one of my physicians said, “Your prognosis is unknown.”

At first, that felt very scary, to be unknown. But when I reflected on it, I thought, “Actually, I like that, because in a sense we’re all unknown.” That puts me on the same playing field as everyone else. Now I don’t feel like I have an expiration date. I really believe that I could have worried about that, or I could continue to worry about this tumor all day, every day, and it still may not be the thing that kills me. I still may have it be a car accident; any number of things could happen to me. It still may not be the thing that defines my life.

I choose to see it that way — that we’re all unknown. None of us really has an expiration date. We should be joyful for the time that we do have, because that’s the only thing we own for sure, the present moment.

Life 11 years after my DIPG brain tumor diagnosis

So looking back now, 11 years later, it is really amazing to me to see all of the things that have happened to me that I never thought would have been possible 11 years ago. Seeing my son, who is now 11, and my daughter, who is now 16, is really remarkable.

Since my diagnosis and since my treatment, other amazing things have happened for me. I was working in healthcare marketing at the time of my diagnosis and during the treatment and for a few years after that. I now work in higher ed marketing, so I changed industries completely, and that has been an amazing journey. I also published a book, Finding the Rainbow: The Other Side of a Cancer Journey, which talks a bit more about my lessons learned after the cancer diagnosis and treatment. I also started my own company, so I do marketing consulting as well. It’s been an amazing, incredible journey that I never would have expected for myself, and I probably never would have ventured into had I not faced this challenge and this unique journey.


LeeAnn T. brain cancer
Thank you for sharing your story, LeeAnn!

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How an Athlete’s Mindset Guided Marina’s Triple-Negative Breast Cancer Experience – Twice

How an Athlete’s Mindset Guided Marina’s Triple-Negative Breast Cancer Experience – Twice

Marina had just qualified for the 2016 Boston Marathon when she received a life-altering diagnosis: stage 2 triple-negative breast cancer. As a 31-year-old with a family history and the BRCA1 mutation, Marina had to pivot from marathon training to an aggressive treatment plan. Throughout her first experience with the disease, she leaned into her identity as a runner, treating chemotherapy as a physical and mental endurance test. She was motivated by the same goal she had before cancer: to reach the ultimate finish line of the Boston Marathon, which she completed just one year after starting treatment.

Interviewed by: Ali Wolf
Edited by: Chris Sanchez

After cancer, Marina’s life continued with beautiful milestones, including marriage and the birth of two children. But after five years of being cancer-free, a new lump led to a second diagnosis of stage 2 triple-negative breast cancer. This second diagnosis was a different experience because it happened during the 2020 pandemic, and while Marina was nursing her two-month-old daughter.

Marina B. triple-negative breast cancer

Facing the challenge of parenting while undergoing chemotherapy and radiation, Marina once again leaned on her “Impossible to Possible” mindset to navigate the physical and emotional hurdles.

Today, Marina uses her experience to empower others through public speaking and her YouTube channel. By sharing and documenting the raw truth of breast cancer, Marina provides a roadmap of hope for those navigating their own cancer journey. Her story is a testament to the power of taking the next step, no matter how daunting the path may seem.

Watch Marina’s videos or read the interview transcript below to know more about her story.

  • Reframing the treatment mindset: Treating chemotherapy as “self-care” or “marathon training” can help alleviate the psychological burden of aggressive medical regimens.
  • Proactive fertility protection: For young patients, discussing options like goserelin injections early can help protect ovarian function during chemotherapy.
  • The importance of body literacy: Marina’s self-checks were vital in identifying her second diagnosis at the five-year remission mark.
  • Accepting help is a skill: Learning to lean on “meal trains” and appointment rotations is essential for maintaining energy, especially for those used to being independent.
  • A universal truth: We cannot always control the diagnosis, but we can control our perspective and the way we choose to show up for the next step.

  • Name: Marina B.
  • Age at Diagnosis:
    • First diagnosis: 31
    • Second diagnosis: 36
  • Diagnosis:
    • Triple-Negative Breast Cancer
  • Staging
    • First diagnosis: stage 2
    • Second diagnosis: stage 2
  • Biomarker:
  • Symptoms:
    • First diagnosis: month-long twinge of pain in breast
    • Second diagnosis: appearance of lump in armpit
  • Treatments:
    • Chemotherapy: AC and paclitaxel
    • Surgery: mastectomy and reconstruction
    • Radiation therapy
Marina B. triple-negative breast cancer
Marina B. triple-negative breast cancer
Marina B. triple-negative breast cancer
Marina B. triple-negative breast cancer
Marina B. triple-negative breast cancer
Marina B. triple-negative breast cancer

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

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


Transcript of Marina’s Interview
  1. Cancer diagnosis and type
  2. Life before cancer: Career, running, and travel
  3. Family history, BRCA1 mutation, and first mammogram at 31
  4. From Boston qualification high to triple-negative breast cancer diagnosis
  5. Surgery, reconstruction, and running Boston as a survivor
  6. Using a “light at the end of the tunnel” to get through treatment
  7. Inspiration from my mom and supporting others on YouTube
  8. Dating, fear, and my partner’s support during treatment
  9. Being asked about future children and choosing goserelin
  10. Learning to accept help and the value of community
  11. Monitoring after the first treatment, and a new lump at year five
  12. Running the 2016 Boston Marathon as a breast cancer survivor
  13. Motherhood, complications, staph infection, and working through things
  14. Second cancer diagnosis during the pandemic, and with a newborn
  15. I started a YouTube channel to share chemo tips
  16. Chemo while parenting newborns, and reframing infusion as self-care
  17. Using an athlete’s mindset and gratitude to get through chemo
  18. Unexpected blood transfusion and learning to let go of control
  19. Resources, chemo checklist, and paying it forward
  20. Cancer stage details for both diagnoses
  21. Chemo hair loss expectations and first tips
  22. Cutting my hair short before chemo hair loss
  23. Using cold caps and hair-preserving devices
  24. Losing my eyebrows, eyelashes, and nose hair
  25. Redefining “survivor” and finding power during treatment
  26. Preventing neuropathy with acupuncture and icing
  27. Dental and mouth care during chemo
  28. Fertility, goserelin injections, and having kids after chemo
  29. Managing nausea with medications and natural aids
  30. Understanding the “wave” of fatigue and chemo brain
  31. My chemo infusion essentials: Ice gloves, eye mask, and headphones
  32. Leaning on support and not feeling alone

Cancer diagnosis and type

I am Marina, and my cancer type was stage 2 triple-negative breast cancer.

Life before cancer: Career, running, and travel

I was a dental hygienist, and I loved my career. I loved to travel and was doing a lot of running. At that time, I was growing more in my running races. I had just run a full marathon. It was my third full marathon here in Arizona, where I am from. I had said I would never run a marathon, by the way. I was one of those people. 

I was dating my husband, and running this third marathon is significant because when I ran my first marathon three years before being diagnosed, I had a really decent time — under four hours — and I thought maybe I could qualify for the Boston Marathon. Then I ran it the next year, and I was five minutes from qualifying, and then in my third marathon, I qualified with just under two minutes to spare. It was within that time frame that I had just had my mammogram the week before, and I was having a biopsy done the week after qualifying for the Boston Marathon.

Family history, BRCA1 mutation, and first mammogram at 31

I was 31, and that is significant. I tell everybody this: really pay attention to their body. I had gone for my first mammogram because I was the age when I was due to go. My mom at that time was a two-time breast cancer survivor, and her first diagnosis came at the age of 41. After her second diagnosis in her 50s, she found out she was BRCA1-positive, so she had the genetic mutation on the breast cancer gene. She was told to tell her family, including her daughters. They basically told me to go at 31, ten years before the age that she had her first diagnosis, and start this whole process — get your first mammogram done, your genetic testing. Could I have done it sooner than 31? I could have. I had the knowledge for maybe a couple of years, but it was just the timeline I was on, and I was on this timeline of running and traveling.

As I was running and training for that marathon, I noticed an ache in my breast. It felt like a little twinge of pain every day that I was noticing, and it was there every day, and it was not going away. In my mind, it reminded me, oh, I am about that age; I need to start this process. So yes, I had some pain, and yes, I had a family history, and I had a timeline given to me of when I should start my screening.

From Boston qualification high to triple-negative breast cancer diagnosis

What happened next was a whirlwind. I was dating my now husband, and he was at the finish of this marathon where I had just run this really fast time to qualify for one of the most popular marathons in the world, Boston. The next week, I had the biopsy and was told I had an aggressive breast cancer, which is triple-negative. It is negative for hormones feeding it, so it typically grows faster. That is the bad news, but the good news is that it responds to chemo well. I went from what I call the top of the mountain — the highest point in my life of achievement as an athlete — to being knocked down, being told I needed to start chemo immediately. I was going to lose my hair. I would be losing my breasts, since it turned out I had the genetic mutation that my mom had, which did not surprise me as much. As soon as I knew I had cancer and the genetic tests were not quite back, I thought, “It’s going to be positive; my mom has had it twice.”

What that prepared me for was knowing I would remove my breasts. I could actually accept that better because I saw my mom go through chemo twice, and I thought, I do not want to do that. So I will remove everything. The hair was really devastating for me. That was something that caused me to process and release. The beautiful thing, though, of going through treatment for six months of chemo was that my husband and I grew closer together, and it brought us closer together. We knew we were meant to be.

Surgery, reconstruction, and running Boston as a survivor

With the determination of getting to Boston, I finished chemo, did surgery to remove my breasts, and did reconstruction. Then I was cleared with four months to start training and ultimately run the Boston Marathon as a survivor one year later. I could not delay. The rules with Boston are that when you qualify, you have to register to run it the next year, or you have to qualify again. In my mind, it took me three years to qualify; there was no way I was going to qualify after treatment. I gained a pound every week during treatment because of steroids. For women with breast cancer, typically, you gain weight because of the medication they give you, versus other cancers, where you might lose weight. I was gaining weight; I was fatigued. There was just no way I was going to qualify again. So, in my mind, I had this timeline of, “I must get through this treatment because I am going to Boston.”

My surgeon and my oncology team honestly never promised me anything. They said, “We just want to keep you alive; that is our goal.” But I had a personal goal, and I had to do things my way, too, and I did.

Using a “light at the end of the tunnel” to get through treatment

It is incredible to have a physical finish line like a race. I call it the light at the end of the tunnel for a lot of people with their treatment. It is really a reminder of why you are going through it. For most people, it will not be because they are going to Boston. For most people, it will be because they want to travel again, they want to play with their kids, they want to find a new sense of normal — just living their life. I remind people of that light at the end of the tunnel: this is why you are going through treatment.

When I lost my hair, I was mad and sad, but then I immediately thought that the chemo was working. When I constantly put things that way, it made going through the process so much easier. I felt like I was fighting, like mad at this medicine, and then I thought, “I am just going to say it is working.”

Inspiration from my mom and supporting others on YouTube

Having someone who had been through the process and someone as close to me as my mom — seeing that she had lost her hair, that she had gone through these surgeries, and that each time she was told she did not have any evidence of disease — showed me that I could get through this. Having that example was so valuable.

It is pretty much what I do on YouTube and what I have done: remind people that I have been through this; others have been through this; you can do this. I will say, though, being told you have cancer will always be shocking and will always be something to process. But when you look to others who have done it, it is really helpful.

Dating, fear, and my partner’s support during treatment

It was everything. I tell people this: I tried to break up with him after I was diagnosed. We had been dating for three months. They had experienced loss in their family. They lost a brother-in-law to colon cancer in his 30s. I almost felt like I was protecting him, too. I wanted to protect him, and I thought, “I cannot get through chemo and lose my hair and go through all this and also have the energy to date somebody.”

When I approached him with that, he said, “Well, no, we are not. That is not why you break up with somebody. You break up because you are not compatible.” He really pushed my fears aside. He literally told me, “If you are afraid of losing your hair and you are afraid of losing your breasts, that is on you, because I do not care about those things.” Having someone alleviate your fears allowed us to move forward with a clean slate and just date as people would. We went to dinner, and we went dancing a lot. We met country dancing, so we continued to date, and it was something that was really beautiful during what would be considered a dark time.

Being asked about future children and choosing goserelin

I think it was so important that it was my oncologist, but also her nurse navigator who asked me about this. Typically, you have a medical team in treatment, but they asked me that question before we started chemo: “You are going to start chemo; you will lose your hair. Do you think you want kids?” To be honest, my answer was, “I think so.” 

It was not 100% yes. A lot was going on. But to even know that you might want that, you need to communicate it, because then they can communicate their options to you. I chose the option of goserelin — doing injections every four weeks to put me into menopause and protect my ovaries. 

It was just so important that I was asked that question. You do not have to 100% know your answer, but to get your options, have the conversation.

Learning to accept help and the value of community

The first time I went through chemo, it was so important to accept help. It is something I learned how to do because I would say I was not good at doing it before. I was 31 when I was diagnosed. I was head of household. I was taking care of my own bills and working, so accepting help was something I had to learn how to do, but it was so valuable.

Since I was a runner, I was going to a running group, and that group of people was so helpful. They set up a meal train. Something I did not realize I needed at the time, but was very helpful, was having somebody go to my appointments with me if I wanted that. At that early age of being diagnosed, my parents were working, my sister was working, my boyfriend was working, so a lot of them could not go to my appointments. Having a rotation of people who offered to take me or pick me up and bring meals was so valuable.

Monitoring after the first treatment, and a new lump at year five

I was just in the queue of what oncology patients might do, which is you return every three or six months. You talk to your oncologist; maybe there is a scan done every six months or year. I was just in this regimen. Being triple-negative, there was no medication to continue at the time. There is something they would use now if I were diagnosed now, but I was just being monitored. My husband and I got married, and we had our two kids, and I was now in year five.

Five is a very important timeline, usually in the cancer world. When you reach remission for five years, your odds of cancer returning drop, so you want to get to five years. It was during that year that I was taking a shower and doing a self-check. I was washing with soap, and I felt a new lump near my ribs, which would be near the breast area. I knew it felt like a lump, and had not been there before, and I knew in my heart and in my body that I had to call my oncology team the next day and get in for an ultrasound. 

Listening to my body and doing that led to a new diagnosis at year five.

Running the 2016 Boston Marathon as a breast cancer survivor

After being diagnosed the first time and going through six months of chemo and surgery, I was cleared in December 2015 to start running, and Boston is in April. I started treatment in April 2015, and I ran Boston in April 2016 as a breast cancer survivor. It was the best feeling in the world. It was incredible. I made a shirt that said “Survivor.” On the back, it said something like, “I just beat cancer,” basically something that made people give me high-fives during the race. Runners running the race with me were patting me on the back, and I was able to chat with some people during the race.

Your whole life changes when you are diagnosed with cancer. You really see the world through a different lens. For me, it is gratitude. It was the best feeling.

Motherhood, complications, staph infection, and working through things

There is a big part between having the two cancers that occurred for me. Getting married — the beautiful, best wedding, people crying, everything, dancing on the dance floor where we actually met at the country bar that my husband and I met at after our wedding.

Having our son — he was a baby when I had a small lump on my breast reconstruction that my surgeon wanted to monitor. We chose the best way to monitor that. We did an ultrasound. You just cannot ever guarantee anything. We removed some of that tissue, and for two weeks, everything seemed fine. At four weeks, I had a staph infection. When my son was a newborn baby, I had to go through staph infection treatment for a lump that was removed.

By the time my son was 14 months, I had had six breast surgeries. I had IV antibiotics for eight weeks. I had been wearing a fanny pack with antibiotics running 24/7. I did not have a port at that time, so now I had a port, like a catheter, and I still worked as a dental hygienist, so it was a tough time.

Motherhood is hard by itself because you have to learn how to be a mom. You have never done it before, and it is changing every day, especially with a baby and their sleep schedule and all the things you worry about. That itself was amazing to me. I think my children have been such a blessing because they are my reason for learning how to get through it, and I just did. My coworker would see me in the break room cleaning my port line from a staph infection that I had to take care of daily, and I would go back and see patients. The medicine was in a black fanny pack under my scrubs and lab coat, and no one could really tell. She said, “I cannot believe you are going through this, and people are out there complaining about traffic.” We all have the right to go through what we go through, but I just did what I had to do. I really did.

Second cancer diagnosis during the pandemic, and with a newborn

I definitely thought I was past it. I was not one of those people who lived with fear every day, which is common for survivors. I was, like I said, just in the queue — I’d go to my appointments and do what they tell me. People around me know I try really hard to shop organic, have a variety of food, and exercise — clearly I am a runner. So it was surprising.

I will paint the picture: it was the end of 2020, the year of the pandemic. I had been home most of that year, pregnant with my toddler son, and then I had just had my daughter. She was two months old. Finding that lump was really surprising, and for a month, it was pretty scary. You can go to my YouTube channel; I have a video where I share part of that diagnosis. I am sitting in the car recording for YouTube, saying, “I am pretty sure I have cancer again,” and then I get the phone call from the cancer center while I am in the car, saying, “We need you to come back tomorrow.” The ultrasound did not look good. They said I needed to be biopsied the next day.

It was a tough time, but going through it the first time still prepared me so much for the hair loss and for the chemo. Everything I learned, I vlogged, and I am so thankful because now it can help so many people with those videos.

I started a YouTube channel to share chemo tips

It is crazy. I started the YouTube channel in March 2020. I had so many people reaching out to me after my first diagnosis through social media — friends saying, “Hey, my mom has been diagnosed,” “My coworker’s friend has been diagnosed,” and they would ask me for tips. I was getting enough of those, and I even offered my phone number if they wanted to call me, but it is weird to call somebody you do not know and ask questions about what to expect.

So I thought, “Why don’t I just record some videos, and then they can send this to their loved one if they need it?” It was just an idea I had. I started watching YouTube videos on my lunch break on how to make YouTube videos. I shot my first two videos on my iPhone in my kitchen with an inexpensive microphone. My husband gifted me a nicer vlogging camera right before I was diagnosed again, a couple of months before. So now I had this nice camera; I had the experience of filming and editing, and it became this natural progression. I started the YouTube channel to help people with chemo tips; here was my chance to really help them because I had been diagnosed again, and the rest is what it was.

Chemo while parenting newborns, and reframing infusion as self-care

It was exhausting. It was tiring. For me, as a breast cancer survivor, I was never able to breastfeed my children. That was just something I knew I was not going to be able to do. Both of my babies were formula-fed. I say, in a small way, since I had accepted that, it was actually easier for me when they were newborns. I just got to enjoy cute babies for the first year, and anybody could feed them a bottle, so that was helpful.

I enjoyed going to chemo. I would say, “Let me go to chemo.” I actually learned this during my first journey. I told a friend, “I have never flown first class, but I like to imagine that going to chemo is like flying first class.” They offer you a warm blanket, and I would say, “Can I have two?” Then I would pull out my headphones, pull out my book, and turn on my Netflix show. The second time, since I was so tired and busy at home, I treated chemo as my self-care time, which is crazy to think. When else can you sit when you are a mom and have little ones? I treated it as self-care time, even though the effects were not good. I did a lot of my video editing at chemo as well.

Using an athlete’s mindset and gratitude to get through chemo

It is really a state of practicing gratitude when you think about it. When I went into chemo the first time, I was a marathon runner. How many people say, “I am going to run 26.2 miles for fun, and I am going to pay to do it, and I am going to train to do it, and I am going to take a lot of time to do it”? Not many people do that. So when I went into chemo with that mindset, I treated it as another marathon. I have to train for this. I have to eat well, sleep well, and keep my mind right. Being an athlete helped me immensely with the chemo process.

It was, “Why am I doing this again? The chemo is working. My hair is falling out — okay, that sucks, but the chemo is working because I am getting to that finish line.” Imagine this, too: I just ran a marathon recently and raised more money for cancer research with that one. It was great. But imagine what it is like to wake up on a Saturday morning and decide that you have to go run 12 miles. It is so easy to say, I do not feel like it today. When you have that mentality going through treatment, you can get through anything. I call it questioning. As an athlete or as a coach — whether it is runners or people going through cancer — it is like, “What can we question today that will help us get to where we need to be?”

Unexpected blood transfusion and learning to let go of control

It was just so great to be done. I would say I have had hiccups through the process. I mentioned having the staph infection at one point, but during the second journey, when I went to have chemo — what I thought would be another chemo, not knowing it would be my last — they did my labs, as they always do before chemo. They check your blood work. They said, “Your hemoglobin is really low. Your iron is incredibly low. We cannot do chemo today.”

I had had that happen before during chemo, where you typically have to pause and might get a shot like pegfilgrastim to boost your white blood cells or your immune system. This time they said, “You need a blood transfusion.” I was not ready to hear that. I thought I was there to get chemo. I was always trying to check them off, like let us get through this as fast as possible. Being told I could not do chemo that day was really upsetting. I sat with that for a minute, and I had a friend call me at that exact moment and say, “What if this blood transfusion makes you feel better because your iron is so low?” I was not even thinking of that, and it was true.

I had a blood transfusion on the 15th chemo of my last journey, and my oncologist said, “You are done. You have done enough. We are going to do this transfusion; you are done.” Unexpectedly, it was my last chemo. I thought it would be after 16. It was another example of trusting the process, trusting your doctors, and trusting where you are. Sometimes we want to control so much, but I think the biggest lesson of cancer is that we actually have to let go of a lot of control. We have to let things happen as they are happening and be able to pivot and go with it. It is going to be okay. It will all go as it should.

Finishing my second treatment, radiation, and speaking about my story
I finished treatment in the summer of 2021. The second journey, I had to do radiation after chemo, so that was new. I went through radiation. I share those tips on my channel. Since then, I continued using YouTube for quite a while. I did one video a week, whether it was a long-form tip video or what, I started doing lives, and I loved that. I love interacting with people, so I committed to two lives a month for quite a while. I got to interact with my YouTube audience and help them feel not alone on the journey, and let them ask their questions.

With my background in healthcare and dental hygiene, I typically answer questions from the perspective of a survivor. I am not going to tell you what medication to take, but I will guide you from that perspective. I really enjoyed that. I continue with at least one live a month now. Life gets busy. As a mom, I have chosen to stay home for the last year and a half with my kids and gain experience raising them. The newest thing I have been doing that is really amazing is getting the opportunity to speak and tell my story. I have made this talk, which I call “Impossible to Possible.” It shares the story about getting to Boston, beating cancer twice, and starting a YouTube channel — all things I would have never, in a million years, at the age of 29, told you I would do at the age of 30. I would not have been able to tell you I would have 31 chemo treatments, 30 radiation treatments, nine surgeries, an infection, and that I would get to Boston and start a monetized YouTube channel. In that 20-minute talk, I get to share with people that we get there by taking the next step. That is my new passion: sharing that story.

Resources, chemo checklist, and paying it forward

If anybody knows somebody who needs the videos, I want them to go to my channel. I have resources there. I do have a free chemo checklist. I think that is really valuable for people because chemo is overwhelming. What do I take? What are the questions I ask? I provide that so they can find it on my channel and feel confident and not have to think about all of that. That is what I do, and I am really happy I can pay it forward.

Cancer stage details for both diagnoses

Both were stage 2. The first diagnosis was stage 2 because of the size of the tumor, but it had not progressed into lymph nodes or other areas, thankfully, and that is something they check after chemo and during surgery.

Chemo hair loss expectations and first tips

The first tip I would offer is to communicate with your medical team. They are going to talk to you about your treatment, and you want to be clear: Is this chemo expected to result in hair loss? Some might just cause thinning of the hair, so it is about setting expectations from the beginning. Then ask about the timeline of when you should expect hair to start falling out. I had aggressive breast cancer. Traditional chemo was used, like AC and then paclitaxel, but for me, it was between 14 and 20 days on each journey, and knowing that timeline was really helpful. So again, it was about managing my expectations, so I knew what it would feel like when I showered and when I put my head on my pillow to go to bed. Those were really important.

Cutting my hair short before chemo hair loss

One tip that helped me with the process was that I had long hair the first time I was diagnosed with breast cancer. I do not remember where I heard it, but it was helpful to cut my hair short before the hair loss, and it helped me process what was coming. I think mainly for after, when the hair started to grow back, I had a new goal. My mind was not like, “Oh, I have to get back to long hair right away.” It was like, “Oh, I can get back to that short bob that I cut before losing it.” That was something that was really helpful.

Using cold caps and hair-preserving devices

This was something I was not aware of the first time I was diagnosed, so I did not even consider it. But the second time I was diagnosed, my cancer center had brought in that service. So if you have a cancer center, again, ask those questions to your medical team or a nurse navigator. It is ideal if they have a device there that you can rent and use. It is typically a higher-end device that will cold cap for you, and you will have better success with results. The other thing to know with that option is that a lot of times, they let you start the process, and it is kind of a pay-per-session model. So if hair loss does start to occur, you are not locked into committing to all of it. For a lot of people who want to consider it, they make it easy to start and try it.

Losing my eyebrows, eyelashes, and nose hair

That was unexpected. I did not think about it. We are just thinking of the hair on our head, which is very important for a lot of us, and that is why it is such a part of the grieving process with treatment. But losing eyebrows and how defining they are to our face is something, and losing eyelashes, and actually something as little as nose hair too. Chemo itself is drying, plus with no nose hair, you can expect nosebleeds and things like that. So again, knowing that beforehand that you can expect that, you can use an ointment in your nose to help. You can learn to draw on eyebrows, which I became really good at because it made me feel more normal going out with eyebrows. I found that I could actually manage the hair loss pretty well. I felt comfortable with that, but I wanted eyebrows when I went out. So I had a friend who was a makeup artist who taught me how to do my eyebrow makeup because I had no idea. Being prepared for that is helpful.

Redefining “survivor” and finding power during treatment

Oh my gosh, there are so many waves that go through being a survivor. To me, a survivor starts, by definition, when you are diagnosed. You do not have to wait to claim being a survivor. So being a survivor is processing. It is knowing that you can be emotional about losing your hair and then having a plan that works for you, like a wig or chemo caps. 

Once you are comfortable with that plan — I would say comfort is different for everybody — but for me, again, knowing how to do my eyebrows, for example, and feeling more comfortable in my skin during treatment, I actually viewed it as a way not that I was trying to make other people feel comfortable, but as a way of giving people some hope. They could probably tell I was a cancer patient if I went out bald, but I still chose to do that, and I still chose to show up to a friend’s birthday or to go to dinner with my husband that I was dating at the time. I chose it as a way of taking some of the power back that we feel like cancer takes from us.

Preventing neuropathy with acupuncture and icing

This is a big one that I learned a lot about. The first time, I addressed neuropathy by having acupuncture done during chemo. It was an option at my cancer center, which was pre-pandemic, and I found it to be very helpful. I had not done acupuncture before treatment; this was not something I was experienced with, but I found that it really helped prevent neuropathy. Neuropathy is experienced as pain, more like tingling — little needlepoint tingling in your hands and feet — from the effects of chemo affecting the nerves. So acupuncture was helpful.

The second time I was diagnosed, I was told by my oncologist to try icing my hands and feet to help prevent the effects of that, and I did that. I would bring a cooler with ice, gloves, and socks with ice packs, and I would put those on during active infusion, and I feel like it helped prevent neuropathy from getting worse. I have still experienced it in some regard, but it helped me.

Dental and mouth care during chemo

This is something I tell people about because I do not think it is at the forefront of our minds, but have a dental check if you can before starting treatment, just to give you a baseline with a dentist that is monitoring your gums. You can expect possible mouth sores because the tissue of the mouth is so sensitive.

It is good to have a dry mouth rinse. That can be very soothing, and those are going to be alcohol-free when you get a gentle one. Also, just keep up with your regular brushing and gentle flossing. It is all related to our immune system, so it really helps to keep up with that. As far as teeth sensitivity, I mentioned that in what I consider my viral video on my YouTube channel. It was unexpected that my teeth would be sensitive, and I cannot even explain to you exactly why, but I did experience that. So pay attention to that, and if you need to, use a sensitivity toothpaste and continue with your oral care just to stay on top of that.

Fertility, goserelin injections, and having kids after chemo

More and more women, unfortunately, are being diagnosed earlier with breast cancer. So women need to talk with their team about whether chemo can cause infertility and, if there is a possibility it can, what they can do to protect their ovaries to have kids after. I was given two options: one, doing fertility treatment — basically collecting eggs before treatment; or two, having injections of goserelin, which would put you into forced menopause and potentially protect your ovaries from chemo, and then allow you to have kids after. Doing the eggs is a timely thing, and typically, if they are trying to get rid of cancer cells, they are going to want you to start treatment.

So doing goserelin was the best option. Every four weeks, I would get it by injection, and I did that every four weeks for six months during chemo. For me, I can say that it worked. Although the idea of getting another injection was not pleasant, it did work, and I was able to have two kids after chemo. 

Managing nausea with medications and natural aids

Probably one of the most common side effects is nausea. Typically, they will prepare you by prescribing medications that you get filled before so you have those on hand that you either take before your appointment or after. At infusion, they will give you a pre-med of anti-nausea in your infusion. Knowing that and asking about it is good. You want to stay ahead of nausea because once it sets in, it is hard to get rid of.

So, being informed — am I taking this at home ahead of time, or is it being infused? — is helpful. They typically give you what to do. Then I used other natural aids to help. I chose to take some ginger chews with me, since ginger is a natural anti-nausea product. I literally took dried ginger that you can get in bulk at your local farmers’ market or grocery store. I also wore those wristbands that you might wear on a cruise ship if you are prone to seasickness. I figured anything additional I could do to prevent it that was not another medication would be helpful. So I wore those wristbands and would wear them the day of infusion all the way until the next day. I do think they might be a mental thing, a placebo, but I believe it did help me.

Understanding the “wave” of fatigue and chemo brain

I will start with fatigue. I think fatigue is one effect of infusion that you will notice the most, and it is very interesting the way it comes on. It can really hit you the day of infusion. I think it is even just from the stress of being at a cancer center and all the things you have been given that day. Then you might start to feel better because of the steroids they give you, and once that regimen is done — midweek — you feel this lull again before you feel better and go back. So learning what I call the wave of fatigue is good because then you can plan around that. You can plan which days you want to run errands and which day you want to schedule the most work if you are still working. So learning that wave of fatigue was important.

Chemo brain is real. It can take a couple of weeks, and you just start to notice this fog. I felt like it got worse when my metabolism was working, so after lunch, I felt fatigued. If you normally feel a little sleepy after lunch, think of chemo brain after lunch. Again, that would not be an ideal time to be making decisions, or if you have children, you would want a grandparent, a friend, or somebody helping you during that time of fatigue and chemo brain.

You will not feel like that all day, every day, and it is the most intense during treatment. It will improve when treatment is done, and it can take up to a solid year of understanding what your new baseline is. I do not really like to say “normal” because nothing is really normal again, but set it as your new baseline, and then go from there. Things that help all of this are movement and staying hydrated. We probably hear it a lot, as people and as patients, but staying hydrated and movement tend to help. If I could get up and do a morning walk or an afternoon walk, that movement helped a lot.

My chemo infusion essentials: Ice gloves, eye mask, and headphones

My essentials were definitely the ice gloves and the ice socks to cool my hands and feet because the effects of neuropathy are real. They can be very unpleasant, and if you can prevent that, it is great. I would just take a lunchbox cooler; nothing big, but enough for those and one refill pack, since I was receiving two hours of infusion.

Those, and an eye mask. Typically, in a cancer center, it might just be one big room; you might have little dividers. It is not common that you will get your own private room. So having an eye mask was so nice to put on and relax, and dim the lights. That leads into my next one, which would definitely be some kind of headphones, whether it is your AirPods or over-the-ear. I think it is great for music, meditation, or watching your favorite show — whatever it is. Having that was definitely essential.

Leaning on support and not feeling alone

It is so important to remember in this process that you are not alone. You might feel alone in your journey, but I really leaned into the people who could help me — family and friends. I really leaned into the people that I would see every day at these appointments, like the nurses, and had conversations with them. They might have tips for you, or even just flipping it and asking them how their day was, or what their favorite show is, or their favorite book. Just connecting with people through this process — when you feel less alone, it is a light at the end of the tunnel. It gives you hope.


Marina B. triple-negative breast cancer
Thank you for sharing your story, Marina!

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Marina B., Triple-Negative Breast Cancer, Stage 2, BRCA1+



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Categories
Chemotherapy Colorectal FOLFOX (folinic acid, fluorouracil, oxaliplatin) Lung Resection Metastatic Patient Stories Radiation Therapy Rectal Surgery Treatments

Kalei’s Stage 4 Rectal Cancer Story: Has My Cancer Returned?

Kalei’s Stage 4 Rectal Cancer Story: Has My Cancer Returned?

For many people, a stage 4 rectal cancer experience starts with fear and confusion. For Kalei, this is exactly what happened. After two lung wedge resection surgeries with clear margins, her care team suggested another watch-and-wait period. It was the same surveillance approach that had previously ended with lung metastases discovered on the very first scan. This time, with a stage 4 diagnosis and two young daughters at home, the stakes felt even higher.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

When new scans in late 2025 suggested possible recurrent rectal cancer in her lung and rectum, Kalei found herself stuck in a gray zone. Radiology reports raised red flags, but multiple doctors were unsure and recommended more waiting. That disconnect pushed her to prioritize something she’d been encouraged to pursue since her first diagnosis: a second opinion. A change in insurance finally opened the door to a new hospital system and a team that took an aggressive, thorough approach to testing. They ordered fresh imaging, bloodwork, ctDNA testing, and even biopsies for suspicious lymph nodes in her neck. Some findings, like a new liver spot that later disappeared, brought terrifying lows followed by profound relief.

Kalei M. rectal cancer

Alongside the medical maze, Kalei’s rectal cancer experience reshaped her home life and marriage. She and her husband learned to support each other on their hardest days — one would stay steady while the other was spiraling. They booked trips all across the country, choosing joy and presence amid uncertainty. At home, she kept working, parenting, and running her photography business to hold onto a sense of normalcy. As she says, “I have cancer, but I’m still a normal person, and I’m still doing normal life things.”

Kalei’s advocacy now extends online, where she shares her symptoms, treatment timeline, and faith with a growing community. Messages from viewers who returned to church, opened a Bible for the first time in years, or finally made that overdue doctor’s appointment have shown her how one rectal cancer experience can ripple outward. She doesn’t romanticize what she’s been through, but she does believe this season has grown her into a different, stronger version of herself, and she’s determined to use that growth to help fewer people feel alone or dismissed.

Watch Kalei’s video and read her edited interview transcript below to find out more about her story. Read about her initial experience here.

  • Second opinions are essential in advanced colorectal cancer, especially when scan reports and doctors’ interpretations don’t align or when recommendations feel unsettling.
  • Being told that you’re young and healthy does not rule out serious disease; noticing and acting on subtle symptoms like bowel changes and rectal bleeding can lead to earlier diagnosis.
  • You’ll always be your strongest advocate, and you deserve testing and explanations that match what you’re feeling, not just what’s on the lab report.
  • Kalei’s experience transformed her relationship, as she and her husband learned to support each other better, communicate more honestly about fears, and find joy through travel and everyday routines.
  • Her stage 4 rectal cancer experience reshaped her faith and purpose, leading her to build an online community where she shares her story, encourages others to seek care, and highlights the power of prayer and connection.

  • Name: Kalei M.
  • Age at Diagnosis:
    • 28
  • Diagnosis:
    • Rectal Cancer
  • Staging:
    • Stage 4
  • Symptoms:
    • More frequent bowel movements
    • Presence of mucus, tissue-like substance, and blood in stool
    • Stomach cramping and sharp pains
  • Treatments:
    • Radiation therapy
    • Chemotherapy: FOLFOX
    • Surgeries: two lung resections
Kalei M. rectal cancer
Kalei M. rectal cancer
Kalei M. rectal cancer
Kalei M. rectal cancer
Kalei M. rectal cancer
Kalei M. rectal cancer
Kalei M. rectal cancer

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

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



My stage 4 rectal cancer update: Scans, surgeries, and a new care team

A lot has happened. So yeah, the last time we spoke, I think it was two days after my second lung surgery. So both of those went great. They went really smoothly. We got clear margins on both pieces sent to pathology, so everything was really good. And then my doctors said it was kind of touch-and-go. They were kind of saying, “Maybe after these surgeries, we’ll discuss doing chemotherapy or some type of therapy, since now you are technically a stage 4 diagnosis.” We didn’t find any other spots within my body at that point that had any metastasized disease or anything like that.

So after the surgeries were done, they told us, “We just want to wait, we’re just going to wait, we’re going to monitor.” And I just remember my husband and I, after we had gotten off that phone call with that oncologist, we were like, “This is kind of unsettling.” I just don’t feel great about this because this is what we were told last year when I had finished chemo and radiation. They said, “We’re going to sit you on a wait-and-watch surveillance plan,” and then that first set of scans is when they found the lung mets. So we just were like, “History might repeat itself.” It’s kind of scary. Now we’re dealing with stage 4. I don’t really know, what if the next place it goes is to my brain or something? So we were just, you have all those natural fears in your mind of what could happen.

And so we went along with that. I remember I had gone back and forth with getting a second opinion. I really wanted to get my case in front of another set of doctors. I could talk about that for a long time, but I’ll keep it short and sweet. I didn’t have a good experience, and I think that it’s so difficult for people to get a second opinion when they shouldn’t. When you’re dealing with advanced disease, it should be a given that you are allowed to take your case to another set of doctors just for an opinion. But anyway, I did not get that second opinion, and we sat on the wait-and-watch surveillance plan.

In December of 2025, I had my first set of MRI, CT scans, and all of that since my surgeries. The first result that we got back was the chest CT scan of my lungs. On that report, the radiologist had noted that there was increasing soft tissue within the lower left lung, and there was a concern for recurrent disease. You read that, you get the results straight to your MyChart. I hadn’t spoken to my doctor or anything, so I’m just like, history is repeating itself.

It’s coming back. This is our biggest fear kind of happening. Then I talked to my doctor about it, and he said, “Well, I looked at it. I’m not really impressed with the area that the radiologist notated. I don’t really think that’s what it is. We’re just going to wait and see what it does.” So I’m like, “Okay, we’ll just wait some more, I guess.”

Then I got my MRI results for my rectum. There was a notation on that scan result that said there was a — I forget the measurement — but it was in the same spot my original tumor was, and there was a concern for recurrent disease. I’m like, “Whoa, what’s going on?” I spoke to my colorectal surgeon who ordered that, and he said the same thing. He’s like, “I’m not really impressed with what the radiologist is notating on there. I don’t think that’s what it is.”

So my husband and I are feeling like, “What is going on?” That’s two different test results, two different doctors telling me, we don’t really agree. So I’m like, no one’s agreeing here. That doesn’t make me feel good, and you’re all telling me, let’s just wait and watch again. So that wasn’t great.

But I had ended up switching insurance with my employer, so I moved over to the hospital that I wanted to go to seek that second opinion with. That was really fantastic, and I love my new team of doctors. They’re wonderful. They just went right in and were like, “We’re going to be aggressive with testing for everything. We’re going to order a whole new set of scans, we’re going to compare it with all your history, we’re going to do blood tests, we’re going to do [ctDNA] tests, we’re going to do all these things, the whole nine yards.” I’m like, ”This is amazing, fantastic.”

During those scans and ordering all these tests, I also noticed that my neck was a little swollen. This was another random thing. I was like, “Some lymph nodes in my neck are feeling a little weird. They’re a little swollen, they’re not going down, they’ve never been there before.” I told one of my new doctors, and he goes, “Yeah, we’re going to order an ultrasound because with your history, I just want to be more cautious.”

So I got an ultrasound and everything, and then my doctor ended up saying she wanted to order biopsies because there was a really enlarged lymph node that they had found on the other side. Our minds — mine and my husband’s — were going to the craziest places. We’re like, “Oh my gosh, has this progressed to my lymphatic system? Is this cancer just spreading like a wildfire?” It’s so scary.

Then they end up doing the biopsy that came back all clear. So my lymph nodes were clear, thank God. We were so relieved. They were very aggressive with getting these tests done and moving everything very quickly, which I’m so thankful for.

Then, one of the scans that they had ordered, a result came back on my liver, saying that there was a new spot that had never been detected before. Through all the scans I’ve ever had, I’ve never had any notation on my liver, and liver and lung are the two places that rectal cancer metastasizes to first. So I’m like, “Oh my gosh, this is it. It skipped my liver the first time, but now it’s back.”

Then I got a follow-up for that liver spot, a follow-up MRI. It turned out that the spot disappeared between my first scan and the second one. That was miraculous. So yeah, a lot of really, really lows and then really, really highs have happened. Right now, I’m in a waiting spot to see what this new team of doctors wants to do going forward. So yeah, that’s a little summary of what’s been going on.

Why second opinions matter in advanced rectal cancer

From the beginning, when I was first diagnosed, one of the first things that people who have experienced this said to me is, “Get a second opinion, get a third, fourth, fifth one; whatever you need to do, just get those opinions. Because the more doctors and specialists see your case, the more confident you’ll be in your treatment plan.”

It’s not a slight to any doctors because you don’t trust what they’re saying or anything like that. It’s for yourself, and it comes back to that place where you are your best advocate, and you really do have to push. So second opinions, especially with advanced disease, I think, are the most important thing ever.

I think that also being in a place where there’s a lot of iffy stuff going on with doctors not agreeing with radiologists and this and that, getting in front of another set of doctors, they’ve given me different perspectives that I didn’t get from my last set. Simple things that just change my perspective on my diagnosis in general. So I would 100% always encourage people to go after that second, third, fourth opinion just to help you better understand your disease, but also to give you the confidence in the treatment plan that you’re going with.

Navigating guilt about changing oncologists

I feel bad. I don’t want them to think that I don’t value them as my doctors and everything they’ve done for me, because, obviously, they’ve done a ton for me, and I appreciate them. But for my specific case, I didn’t really tell them that I was switching over. I just had my last set of appointments with them, my last set of scans, and then I just transitioned. That’s kind of where we left it.

It might have been another story on The Patient Story of someone else that you had interviewed, and this stuck with me. She said, “It is their job as healthcare providers and doctors to serve us as the sick people. That is what they are being paid for. That’s what they are there for. It’s not our job to try to tiptoe around their feelings. We’re dealing with our lives and our health.” 

That is what you have to keep at the forefront of your mind when you’re seeking second opinions, maybe thinking about leaving your doctors and things like that.

Coping with stage 4 rectal cancer as a young family

It has been a ride, honestly. It’s so funny because now, where we’re at, we’re in such a wonderful place. Recently, we’ve been talking a lot about how we handle things like waiting for results, the days when we received really bad results, and the days when we were preparing for surgeries or preparing for treatment. We kind of laugh at how we handled those situations because I feel like we’ve grown so much.

I think that you don’t really have a choice when you’re faced with something like this; you have to buckle up and push through it. My husband definitely makes light of everything. He makes me laugh through it all, which is what I need. It makes everything a lot more bearable. But yeah, he’s really incredible.

We had some really tough times. I would say after the stage 4 diagnosis, that was really rough. Then, in December of last year, when we got those test results saying that there was a possible recurrence in my lungs and my rectum, it was a really tough time. He puts on a brave face. But everybody is human, and you’re faced with those dark thoughts of not being around for your family, or in his case, his wife not being here for his children, or to grow old with.

So we’ve had difficult talks, but overall, it’s done nothing but strengthen our relationship, which is kind of crazy. We’re so blessed that it went this way rather than the alternative. We’ve learned that when I’m on a high, I’ll encourage him because he’s most likely on a low, and vice versa. If I am panicking and freaking out, he’s like, “All right, let’s go, we’re going to do something to distract you, we’re going to get you whatever it may be.” It’s a good balance.

I think for any couple that’s going through health issues or things in life like that, it’s good to recognize when your partner needs your strength and vice versa.

Letting loved ones in and building a cancer support community

To the people who are a little bit more closed off and don’t want to burden their family or friends with what they’re going through, I think something that has really given me great perspective is my family and friends. I have a wonderful support system, and they’ve told me throughout the past two years, “We are here for you, anything you need, anytime you want to talk.”

I know that a lot of people can say that to you. But truly, when you let it out, and you talk about your feelings, your fears, your worries, your anxieties with the people that love you most, they will step up, and they will comfort you, and it makes it feel so much more bearable. You can really deal with everything so much easier when everybody around you knows how you’re feeling.

If you keep it inside and keep it to yourself, you’ll eventually get to a breaking point. I’ve learned that the hard way. I’ve gone through periods of time where I keep things to myself when I’m feeling really down about something, and then it just kind of explodes because we’re humans, and that’s what happens.

I really do agree with building a community of people that may not even understand what you’re going through, but they love you. That’s the number one thing. They’re there for you to get all those emotions out.

Distractions, joy, and travel during rectal cancer treatment

A huge thing we did in the second half of last year was we went on a ton of vacations. We were like, “We’re just going to get out of town, because what better way to be distracted from our reality of what’s going on than to literally leave where we are every day?”

We went to a little beach town called Carmel, just the four of us — my husband and I and our daughters. We did a little weekend trip. My husband and I went to Denver, Colorado, for a trip. We took our daughters to Disneyland. We were like, “We have a new perspective on everything, we just need to distract ourselves and live our lives and do these things that are going to bring us joy.” Those were the best decisions that we made. Doing all those trips and staying distracted was great.

Another thing that really helps me is that I love to be busy. I thrive on a full schedule. I continued through all of this to do my photography business. I was working full-time, staying busy with my daughters, and things like that just help me feel like a normal person. I think that’s the best thing. Yeah, I have cancer, but I’m still a normal person, and I’m still doing normal life things, and I think that’s really important.

Diet changes, fasting, and anti-inflammatory eating with rectal cancer

Food is definitely a huge, huge factor, and I don’t think it’s really expressed enough by the healthcare industry, by your doctors, how important everything you’re putting into your body is going to affect you internally. That’s something that I really hope changes because it’s so crucial, especially with colorectal cancer rising in young adults.

It’s the majority of what’s causing these cancers, my doctors have told me, environmental and dietary causes. There’s something that’s going on that’s causing this increase. So I’m doing my own research. There’s a lot of research and information on the internet. I’ve been really focusing on an anti-inflammatory diet. I’m not perfect. Not 100% of the time am I choosing anti-inflammatory meals. But I definitely want to be very intentional about the foods that I’m bringing into my home for my daughters, because now they have a direct link to cancer. I don’t want them to be any more at risk than they already are.

So we’re being really conscious. My husband and I are cooking all our meals at home. When we have to eat out, we’re like, “Oh gosh, we’ve got to eat out, this is going against what we want.” We’ve started going to farmers’ markets, really focusing on organic, clean things. We’ve cut out — I know it’s a very hot topic — seed oils. That’s inflammatory to your gut. We’re cutting those out.

Any of the prepackaged snacks that have preservatives, I’m really steering clear of that kind of stuff, especially for my daughters. We’re trying to do basic fruits, vegetables, meat, protein, homemade bread, just very basic things. I still have a ton to learn, but that’s where we’re making progress, so it’s good.

Early rectal cancer symptoms before diagnosis

When my original symptoms started, they were really minor. I was noticing my bowel habits were changing. I was going more often than I ever did before. To me, that’s so small, but I noticed it. I thought to myself, “Maybe I’m getting more fiber in my diet, I’m drinking more water, things are just flowing better.”

Then I started to have some strange tissue and mucus coming out when I would use the restroom. That was another slight thing that I thought, “I’ve never seen this before, it’s kind of strange.” I’m just keeping it in the back of my mind. Then I started experiencing stomach pain, sharp pains, and rectal bleeding. That progressed to blood clots and all of those classic symptoms.

I just remember at the beginning, those slight changes, I was like, “I don’t really think that’s anything.” I think that in a lot of cases where people don’t get diagnosed until it’s progressed a little more, it’s because they just think, I don’t think it’s that big of a deal. Luckily, in my case, I started bleeding and experiencing pain, so it triggered me to go seek a doctor. Those were the only real symptoms that I had experienced at first.

Being dismissed as young and healthy before a rectal cancer diagnosis

I remember my first appointment, when I saw a doctor for these symptoms. She asked me about my whole history. I told her my whole history: healthy, two pregnancies were the only reason I had ever gone to the doctor. She said, “Okay, we’re doing blood work.”

I remember one of the phrases that she said to me after I got my blood test results. She said, “You’re not anemic, so there’s nothing life-threatening going on. Meaning, you’re not losing a ton of blood where it’s dangerous, your levels are normal, and you don’t have any medical history. It could be an internal hemorrhoid because you’ve had two babies; things change down there.”

Another doctor that I had seen at the ER, he ran blood work as well, and he said the same phrase. He said, “You are not anemic, there’s nothing life-threatening, you are young and healthy, just wait for your next appointment.” Those were the two things that I had heard from two different doctors. I’m like, I’m young and healthy, well, why am I bleeding? Why am I having pain? There’s something wrong.

Advice for patients who feel brushed off by doctors

Looking back on it, I feel very frustrated, more so with myself, because I wish that I had known what would be a good test to request. I know now I could have requested a simple CT scan, and the tumor would have been picked up. I had never had a CT scan before, so I didn’t even know what that was. I didn’t know how to ask these things.

I wish that I had more knowledge so that I could push back a little bit more. So I would say to people who are getting brushed aside with, “You’re young, you’re healthy, you don’t have any history,” or anything like that: truly push. “There is something wrong with my body. I know my body better than anybody else. I need the tests that are going to give me the answers that I need. I don’t know what those tests are, but can you please give me the options?”

Sharing my rectal cancer story on YouTube and building a faith-based community

The community is really incredible. I could have never imagined that this many people would be following along. One of the biggest things that people message me and comment on is that so many people are praying for my health and for my family, which is the biggest blessing because prayer is so powerful. To have that amount of people who are strangers online watching my videos, it’s incredible.

A lot of people message me about that, and then there are a ton of people who say, “Your story is very impactful, and it’s brought me closer to God.” “I’ve started attending church again.” “I’ve opened up my Bible for the first time in ten years.” I’ve had all these testimonies come through of people who are being strengthened in their faith, and that is so important to me.

Another thing is, a ton of people will message me about symptoms they’re having. They ask, “Is this what you experienced?” I’m able to help people go and push to make their doctor’s appointments and seek out healthcare because a lot of people just don’t think anything’s wrong. I’ve seen a lot of stories of very iffy people; they don’t know what they should do, and they ask. Of course, I encourage them.

A ton of people will reach out to me with — it’s actually kind of creepy — the same story as me. The timeline of everything lining up is so similar to my timeline and diagnosis. I’m like, wow, so many people are walking through this exact situation, which is crazy. Those types of people in the online community can support each other.

I’ve asked other people, “What was your treatment plan? Because I’m getting these weird answers from my doctors. Did you ever experience this, or what did you do next?” It’s so important, and it’s so amazing to talk to other people who are going through similar things as you.

Finding beauty and purpose in a rectal cancer diagnosis

I think that is the theme of my whole cancer story, honestly. Before any of this, if I had heard that somebody was diagnosed with cancer, it’s like, “Oh my gosh, what an awful situation.” I can’t even imagine how scary, and their world is probably just crumbling.

For it to be where I am now, where I’ve grown so much in my faith, I’ve grown so much in the strength that I have, confidence in myself. There are so many things: this community that I’ve built online, being able to know that I’m helping other people and encouraging other people, it’s very surreal. Being able to be a good example of walking through suffering with peace is very encouraging to me.

It’s one of the scariest things that you can go through, but I feel like cancer was supposed to happen in my life for a reason. I’m not saying that I’m thankful that I got cancer. You’re never thankful that you got sick. But there are certain things in your life that if you weren’t tested and put through a trial of some sort, you wouldn’t have grown into the person that you are today.

Rectal cancer treatment timeline (radiation, chemotherapy, and lung surgeries)

Originally, when I was diagnosed with stage 2 rectal cancer, I had a grade T3 tumor. I started with 25 rounds of pelvic radiation. During those 25 days, I also did chemo pills. Then we took a little break, and I did four and a half months of FOLFOX IV chemotherapy.

That was every other week. I did infusions for three days. Then that was that treatment. It completely dissolved my original tumor. When they found the lung nodules, I was set to do two lung wedge resection surgeries to remove those two portions. That’s all the treatment I’ve had so far.

Preparing mentally for possible recurrence during watch-and-wait

I think it’s definitely hard being in a waiting period when there are so many “ifs.” There could be a recurrence again or anything like that. I think it really helps to focus on the fact that I have overcome so much so far.

I’ve completed four and a half months of chemotherapy. It was brutal. I completed that. The radiation therapy had awful side effects. I completed that. I had two lung surgeries, and I feel completely normal. I came through that, and I was healed from that. Focusing on those things really helps me prepare myself mentally.

If there were to be a recurrence sometime in the future — it could be next month, it could be a couple of years from now — I conquered those things. Having the mindset that it’s going to be brutal, probably, but I will get through it, I’ll be stronger, and we’ll move forward. That’s something that I hold on to.

What colorectal cancer patients should know about colonoscopies

It’s the most glamorous procedure. No, but okay. It starts with the prep, and I’m sure that’s what everybody hears is the most daunting thing about a colonoscopy.

For mine, you get this giant jug, and you have to fill it up with water. There’s this solution in there, you mix it up, and you have to fast. You can’t eat, I think it’s for a day and a half or something like that. While you have nothing in your stomach, you’re chugging this gigantic bottle, and you have to do eight ounces of it every 15 minutes. You have to drink a lot of it. While you’re drinking it, you’re obviously going to the restroom a lot, a lot, a lot.

I was so nervous about it before my first one because you hear it, and you’re like, you just live on the toilet for two days. That does not sound enjoyable. It sounds awful. Honestly, it’s not that bad. It’s really not that bad. I’ve had four of them. It’s not that bad.

The hardest thing for me was not eating because I get a headache from not having coffee or food for a day and a half or whatever. But you do all that prep, and then you’re starving, you’ve been drained of everything, and then you go in for the procedure. That’s kind of nerve-wracking. You go in, and it’s like you’re getting prepped for a procedure. They get your IV in, and they’re giving you medicine to make you a little bit sedated.

I’ve never woken up in the middle of one, felt any pain, or felt uncomfortable. I just go right to sleep. They go in there, do their thing, look around, and then I wake up, and I’m in recovery. You’re a little drowsy afterwards, but then you just go home. I’ve had pretty okay experiences. They’re not as awful as they sound.

I just want to encourage, if you think that you should go get a colonoscopy, do it. I think you should do it.

One wish for rectal cancer awareness and early detection

That’s a good question. Let’s see. Obviously, the screening age for colonoscopies needs to be lowered. I know it got lowered to 45 or something now, but that’s not low enough. I’m sorry. So many young people are being diagnosed with colorectal cancer. It needs to be way lower.

My other big one would be doctors taking patients more seriously when they come to them with these symptoms, regardless of age, history, or anything. That is something that I really, really hope would change. So many people are like, “My doctor said I’m fine,” and they just move on, and their disease could be progressing. That’s my number one. I hope that doctors will be more cautious.

What Colorectal Cancer Awareness Month means for our family

Colorectal cancer awareness to me is something that will be so important in my life going forward. To me personally, I think it is a representation of the season that I’ve walked through so far.

I don’t want to get all sappy and start crying. I think that it’s really important to me, raising my daughters, for them to be aware, to know that their mom walked through colorectal cancer, walked through treatment, and is going to have this disease for the rest of her life.

I think March in general is important in my family’s story because it has changed the trajectory of our family story in regards to changing our lifestyle habits, in regards to God being at the center of our family, because of this giant trial that we walked through as a family. It’s huge for me because I don’t want other people to have to experience any of this, and spreading awareness about it, I feel like, is kind of a given job that I need to be living out, spreading awareness and sharing my story because it is important.


Kalei M. rectal cancer
Thank you for sharing your story, Kalei!

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More Metastatic Colorectal Cancer Stories

Lindsay

Lindsay D., Colon Cancer, Stage 4



Symptoms: Lump in pelvic area, funny-smelling food, weight loss
Treatment: Chemotherapy, colectomy (surgery)

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

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

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

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

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

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

Megan F. ALK+ lung cancer

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

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

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

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

  • Name: Megan F.
  • Age at Diagnosis:
    • 33
  • Diagnosis:
    • Non-Small Cell Lung Cancer (NSCLC)
  • Mutation:
    • ALK
  • Symptoms:
    • Chest pain
    • Anxiety
    • Shortness of breath
    • Arm pain and swelling
    • Back pain
  • Treatment:
    • Targeted therapy: lorlatinib
Megan F. ALK-positive lung cancer

Pfizer

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

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



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

Megan F., ALK-positive lung cancer patient

Biomarkers and ALK-positive lung cancer diagnosis

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

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

Why I researched lung cancer and biomarkers

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

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

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

How my biomarker result shaped my treatment plan

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

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

How biomarkers changed what I thought lung cancer looked like

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

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

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

Megan F., ALK-positive lung cancer patient

Why hope matters and how research gives it to me

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

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

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

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

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

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

Why biomarker testing and “scary” medical terms matter

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

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

How my doctor explained my treatment options with ALK

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

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

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

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

Megan F., ALK-positive lung cancer patient

Chemotherapy conversations vs. targeted therapy conversations

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

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

How I chose my targeted therapy

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

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

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

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

Key questions I asked about treatment and side effects

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

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

Questions I’d tell other patients to ask their doctor

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

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

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

Megan F., ALK-positive lung cancer patient

The power of my oncologist’s encouragement

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

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

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

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

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

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

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

When daily mom life became something I could celebrate again

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

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

Scan results, tumor shrinkage, and quiet celebrations

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

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

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

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

Megan F., ALK-positive lung cancer patient

How I cope with “scanxiety” and waiting for results

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

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

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

What I knew about clinical trials before targeted therapy

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

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

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

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

How I humanize the importance of cancer research

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

What I’d say to people hesitant about clinical trials

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

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

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

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

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

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

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

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

Pfizer

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


Megan F. ALK-positive lung cancer
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More ALK-Positive Lung Cancer Stories

Kelsey D. non-small cell lung cancer

Kelsey D., Non-Small Cell Lung Cancer, EGFR+, ALK+, Stage 4 (Metastatic)



Symptoms: Severe back pain, falling due to collapsed spinal vertebrae

Treatments: Radiation therapy, targeted therapy (tyrosine kinase inhibitor, osimertinib), surgery (spinal fusion surgery), chemotherapy (through a clinical trial)
Megan F. ALK-positive lung cancer

Megan F., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptoms: Chest pain, anxiety, shortness of breath, arm pain and swelling, back pain

Treatment: Targeted therapy (lorlatinib)
Clara C. stage 4 ALK+ lung cancer

Clara C., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



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)
Stephanie K. ALK+ lung cancer

Stephanie K., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptoms: Persistent and intense cough, general feeling of sluggishness

Treatments: Chemotherapy, targeted therapy through a clinical trial, radiation therapy
Ruchira A. ALK+ stage 4 lung cancer

Ruchira A., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptoms: Mild intermittent cough while talking, low-grade fever, severe nonstop cough, coughing up blood, collapsed left lung​

Treatments: Surgery (lobectomy), targeted therapy

Categories
ABVD Autologous stem cell transplant BEAM Chemotherapy Hodgkin Lymphoma ICE Patient Stories Stem cell transplant Treatments

James Faced Recurrent Hodgkin Lymphoma While Becoming a Dad

James Faced Recurrent Hodgkin Lymphoma While Becoming a Dad

Hodgkin lymphoma and a stem cell transplant aren’t what most people expect to face in their early 20s — let alone Hodgkin lymphoma twice — but that’s exactly what happened to James. He was first diagnosed with stage 2 Hodgkin lymphoma at 22, during his senior year of college at the University at Buffalo. He struggled with weeks of night sweats and intense itching, and his younger brother spotted a tennis ball-sized lump on his neck. Within weeks, James was fast-tracked to Roswell Park Comprehensive Cancer Center, where he started ABVD chemotherapy, determined to finish his finals, graduate on time, and hold onto a sense of normalcy even as his hair fell out and his social life became a blur.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

James reached remission after six months of treatment for Hodgkin lymphoma, but life after being declared cancer-free was far more complicated than he expected. He describes feeling like a “shell” of himself in college and then struggling to reenter everyday life. To cope, he numbed himself with alcohol and distanced himself from people while “scanxiety” and fear of recurrence quietly grew in the background. Over time, he stopped drinking, went back to graduate school for his MBA, and built a career in sales that had him traveling across the country. He also met his future wife, and they now have a newborn son.

James B. Hodgkin lymphoma

Seven years later, subtle but familiar warning signs appeared again: a small lump, swollen lymph nodes, and the same relentless itching. Initially, his blood work was clean, and doctors thought it was an infection or mono, but scans and a biopsy confirmed that his Hodgkin lymphoma had returned, likely due to reawakened dormant cancer cells. The timing was devastating: his wife was around 29 to 30 weeks pregnant when they learned he would need intensive chemotherapy and an autologous stem cell transplant, necessitating prolonged hospital stays and a long recovery.

Through grueling high-dose chemo, isolation, neuropathy, fatigue, and the emotional toll of being immunocompromised while preparing for fatherhood, James kept getting out of bed each day, walking the halls, and writing down one thing he was grateful for. About two to two and a half weeks after his stem cell transplant, he was declared no evidence of disease (NED) and cleared to be in the delivery room to meet his son. He calls this experience “phenomenal” and is one of the images that kept him going during the hardest nights in the hospital. Today, he is rebuilding life in Buffalo with his wife and baby, navigating isolation, and working from home. He redefines survivorship as giving back to others through events like Ride for Roswell and Light the Night.

Watch James’ video or browse the edited transcript of his interview below. You’ll learn more about his story:

  • Early Hodgkin lymphoma symptoms like night sweats, intense itching, and a noticeable neck lump should never be ignored, especially when they persist or worsen.
  • Community connections and specialized cancer care at centers like Roswell Park can accelerate diagnosis and treatment, helping patients move quickly from fear to a clear plan.
  • A universal truth in cancer care is that recovery is not only physical; mental health support, including therapy and naming depression or anxiety, can be essential to healing.
  • James’ experience shows that life after a stem cell transplant involves lasting changes like isolation, fatigue, and neuropathy, but also new purpose, including fatherhood and advocacy.
  • He focused on small daily wins and practicing gratitude, even on the hardest days. This helped him keep moving, both literally and emotionally, through intensive chemo and stem cell transplant recovery.​

  • Name: James B.
  • Age at Diagnosis:
    • 22; recurrence, 29
  • Diagnosis:
    • Relapsed Hodgkin Lymphoma
  • Staging:
    • Stage 2 (initial diagnosis)
  • Symptoms:
    • Night sweats
    • Itching
    • Persistent lump in the neck
  • Treatments:
    • Chemotherapy: ABVD, ICE, and BEAM
    • Autologous stem cell transplant
James B. Hodgkin lymphoma
James B. Hodgkin lymphoma
James B. Hodgkin lymphoma
James B. Hodgkin lymphoma
James B. Hodgkin lymphoma
James B. Hodgkin lymphoma
James B. Hodgkin lymphoma
James B. Hodgkin lymphoma
James B. Hodgkin lymphoma

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

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


Transcript of James’ Interview
  1. Introduction and first diagnosis
  2. My first symptoms during college
  3. The path to my first cancer diagnosis
  4. How quickly my symptoms escalated
  5. When the word “cancer” entered the conversation
  6. Fast-tracked care and community connections
  7. Hearing the first diagnosis and college impact
  8. My ABVD chemo regimen and finishing college on time
  9. Social life, drinking, and being a shell of myself
  10. Remission and the seven years between
  11. My second diagnosis and recurrence
  12. Intensive treatment: ICE, BEAM, and stem cell transplant
  13. The birth of my son and the timing of my recovery
  14. Recovering from a stem cell transplant with my newborn child
  15. Isolation, immunity, and my new routines
  16. Survivorship, scanxiety, and giving back
  17. Encouraging other men to seek help
  18. My message of hope

Introduction and first diagnosis

My Hodgkin lymphoma diagnosis and where I live

My name is James. I was diagnosed for the first time in 2018. I have had cancer twice. The first time I was diagnosed in 2018, it was the end of my senior year of college at UB with Hodgkin lymphoma. It was stage 2 at that point. I went through chemo, came out the other end, and recovered. Fast forward seven years, and it came back in September 2025. This time, the treatment was a lot more intense, but it was the same diagnosis.

Who I am beyond cancer

So I do sales and have been in sales for a couple of years now. I work from home, which has been very flexible with having a newborn. I recently became a dad about ten weeks ago. My son was born on December 2nd, so just a couple of weeks after I finished my last treatment of chemo and my stem cell transplant. I was in the hospital with my wife, holding my newborn. So things went pretty quickly. Outside of all this, I enjoy golfing and supporting the Buffalo Bills and Buffalo Sabres, because I am from Buffalo, New York. There is not much to do here other than support sports, as there is always snow outside.

My first symptoms during college

Early Hodgkin lymphoma symptoms in college

I started waking up in the middle of the night, having sweats, a little drenched. I kind of just brushed it off as maybe I was battling an illness or something. Then it started getting to a point where I was experiencing itching on my legs and my arms, really aggressively. I was starting to have scars, and I thought, “This is probably not normal.” I stayed pretty healthy, and I worked out; I kept myself in shape. But my younger brother noticed a huge lump on my neck. I always thought it was maybe just an inflamed muscle or something I pulled. I never honestly really looked into it too much, but when I finally looked at it, it had grown to probably the size of a tennis ball. That is when I knew that it was not normal, and I had to get that checked out.

The path to my first cancer diagnosis

The first thing I did was go to my primary doctor. I showed them the lump and said, “Hey, I’m not sure really what this is.” They looked at it and said, “We recommend that you do a scan.” I think it was a CT scan first, and then it ended up being a PET scan, and then an overall biopsy at the end. After the first scan, they told me, “We recommend you go to Roswell Park,” which is our cancer hospital in Buffalo, New York, to get this checked out. Things moved pretty quickly. Within a couple of weeks, I was at Roswell for an appointment with the lymphoma team. From there, just based on the sheer size of my neck and how it looked, they immediately ordered a biopsy, which is when they figured out that the tumor was cancerous.

How quickly my symptoms escalated

From the time of the night sweats to the diagnosis, it was about two weeks, so it moved pretty quickly. I think the sheer size of the lump definitely scared my primary doctor to the point where I was getting an appointment with Roswell within a couple of days.

That lump had not just grown over two weeks, though. I looked back at pictures because I was curious: how in the world did I not see this? In all the pictures, there was something there. I just never noticed it. It was the craziest thing. I do not know how I never noticed it or how I was never aware of it, but it had always been there. I just never focused on it until my brother called it out. Then it became very apparent that it was not normal.

When the word “cancer” entered the conversation

When I was recommended to Roswell, deep down, I started to get some fear about whether this was cancer or not. If you are at your primary doctor and they are not able to give you an answer on something, and they are directing you to a cancer doctor, that is usually when fear starts to creep in, and you get a bad feeling about it. That is when I thought, “Oh, this is not good,” because I had gone to my primary for other things, and usually they had an answer. When they do not have an answer, and they are directing you to someone like a cancer doctor who might have an answer, it is never a good feeling.

It was about two weeks of blood work and scans before the full diagnosis. They did blood work first, then a CT scan and a PET scan. I think all of that happened within a week. Based on the scans, they scheduled a biopsy for the following week, and then I had my follow-up with my doctor a day or two later, where they essentially told me, “This is cancer, and we need to get you started on treatment right away.”

Fast-tracked care and community connections

I am very lucky. We have a lot of connections in the community, which is great. One of my neighbors works at Roswell, and I was living at home at that time while still in college. My parents immediately called them, and they were able to get me in really quickly, because I know at times it can be drawn out. I was very fortunate.

Hearing the first diagnosis and college impact

How I processed a Hodgkin lymphoma diagnosis at 22

It is tough when you are 22 years old and in college. You have finals going on, and all your buddies are talking about going out to the bars and living a normal life. You are sitting in the waiting room, and the doctor is telling you, “You have Hodgkin lymphoma, stage 2, and we have to get a port in your chest and start chemo for the next six months. This is your plan; this is the layout.” Every plan you have just goes out the window. 

As a senior in college, you are trying to think about your career: what am I going to do after college? Where am I going to work? Next thing you know, it is, “Okay, how am I going to survive and get through this so that I can have a career and have a life after this?” It was depressing and really tough. But I tried to be positive each day. 

When you are in a hospital, you see people in much worse situations. I tried to have some gratitude that at least there is a cure for my situation, versus some people who have terminal cancer. I tried to consider myself the lucky one, that my body just had to go through a little pain for six months, and then I could come back on the other side stronger and ready to attack life again.

My ABVD chemo regimen and finishing college on time

My treatment was the ABVD regimen. It was chemo every other week, so essentially twice a month for six months — twelve treatments total. Each treatment lasted anywhere from four to five hours. The chemo was a drip with four different kinds of drugs being dripped into your system.

At first, I did not have a port, so it was going through my veins. I do not recommend that, because it was excruciating. Eventually, I did get a port because I could not keep doing that.

I still went to class. I would do chemo, then rest up for a couple of days. The first couple of rounds of treatment were not as bad for me. I was able to do my finals, graduate on time, and walk across the stage, which was great. I did it a couple of days after treatment and was not feeling great; my hair was falling out. But I still made it a priority to walk across the stage. It was something I wanted to do and something to be proud of. It was definitely tough.

Social life, drinking, and being a shell of myself

Looking back, I do feel like I missed out on parts of the college experience. At that time, I was drinking a lot. I do not drink anymore; I am four years sober and have been sober for a while now. I would still go out, which I would not recommend. I would go out every once in a while and feel like s*** most of the time. I would not feel great. 

My social life still existed, but mentally, I was never present. I was physically in places, but I was never actually there. I was a shell of myself. I was in pain a lot, with a lot of joint pain. I was constantly exhausted. I would sleep for days at times. I did not have an appetite. I tried my best to get out and be a part of life, but I just never felt the same.

Remission and the seven years between

Hearing “remission” and post-treatment depression

Hearing “remission” after six months of treatment was huge. When you are in that battle for six months, you start to accept that maybe this is your life moving forward. It becomes the same cycle: you start to feel better after chemo, and then you are back in there again. 

When I heard “remission,” I was just so thankful, because you always fear that your scans will not be clean. I was grateful and happy, but at the same time, I did not know how to live life. I struggled coming out of being cancer-free. I did not acclimate back into normal life well at all. I was abusing a lot of alcohol to numb myself, just being transparent. It was one of the things that made me feel okay and safe. I distanced myself from a lot of people. People do not talk about it much, but you can get really depressed after treatment. There is a lot of fear and anxiety that comes from being cancer-free, because you still have to go back for scans, and there is always the fear of recurrence.

Eventually, over time, I distanced myself from alcohol and was able to start building a life back up for myself. I went back to grad school and got my MBA. I got into a career I love that lets me travel across the United States. I met my now wife, and we now have a beautiful son together. I was able to get married. A lot of great things happened from getting past this. Obviously, it came back, but those things are still great, even though I had to fight it again.

My second diagnosis and recurrence

Signs and symptoms of Hodgkin lymphoma recurrence

Before the recurrence, I was traveling a lot for work. Sometimes I get sick from being on planes. After one trip, I came back home and was not feeling good. Being seven years clean, I did not think it was cancer. I thought I had just caught something on the plane. But it lasted for a couple of months, to the point where I started to get a little lump, and my lymph nodes were swollen. They were not as big as last time, but they were swollen and noticeable in my neck, which definitely alarmed me. Then I started to get that itching again that I had when I was first diagnosed. That really alarmed me.

I went to Roswell. They did some blood work, and my blood work came back clean, which was a relief. They put me on some antibiotics, but nothing really helped. I still had the lump on my neck and was still not feeling good. They eventually said it was mono. They did a scan. Apparently, something I was not aware of then, mono can at times cause dormant cancer cells to reawaken. If your treatment did not work right away, sometimes you have very tiny dormant cells that just exist. Apparently, the mono reawakened those cells. When they did a scan, they saw that. They did a biopsy and confirmed that my cancer had indeed returned.

The emotional impact of a second cancer diagnosis during my wife’s pregnancy

My wife and I had just gone on our babymoon. We went out to Colorado and then to Vegas. We were traveling before the baby came. It was really tough. My wife was pregnant, sitting across from me, and I was in the room while the doctor told us the cancer had returned. 

Instead of an easier regimen of treatment, though the last one was tough, this new treatment plan was very intense. To hear that, knowing we had a baby coming, knowing that I would be spending nights at the hospital instead of just going in for day treatments, and facing a stem cell transplant on top of that, it was tough. It was extremely disappointing to hear. I was filled with a ton of fear, and we did not really know what to do at that moment. It was a really dark moment for us as a family.

She was about 29 or 30 weeks pregnant at that point. She was getting close.

Intensive treatment: ICE, BEAM, and stem cell transplant

My ICE chemo, BEAM chemo, and transplant timeline

The plan was ICE chemo and then BEAM chemo with a stem cell transplant. I would start with ICE chemo. ICE chemo meant three to four days in the hospital, where I would get treatment around the clock. Then I would have two to two and a half weeks to recover, and then I would be back again at the hospital overnight getting the same chemo.

After the second round of ICE chemo, if my scans came back clean, I could proceed to the next phase, which was BEAM chemo. If they did not, I would have to do ICE chemo one more time. Thankfully, after two cycles of ICE chemo, I was good and moved on to BEAM chemo.

I already had a port in my chest and still do, but for BEAM chemo, they needed to put another port in with thicker tubes and wires sticking out. Before I even did BEAM chemo, they harvested my stem cells. They put me on medications that allowed my stem cells to move into my bloodstream. I spent two days having my stem cells harvested. I would go into a clinic at Roswell from about 7 a.m. to 1 p.m., be hooked up to a machine, and they would harvest and freeze the cells. After they harvested enough, I was admitted to Roswell for seven straight days of chemo.

That was the BEAM chemo. I did not fully realize while I was going through it — and I am happy I was not — but the regimen itself is very intense. It completely wipes your system and your bone marrow clean. At the conclusion of that chemo, they reinfuse your stem cells that were frozen back into your body through a drip.

This was a lot different from just going in every other week for a couple of hours. This meant putting the rest of my life on hold. I could not work. I had to have a caregiver after this. My wife, who was pregnant with our child, was driving me to all my appointments. I had to go every day. I was on a ton of meds. The stem cell transplant is no joke. I was in good shape, but going through that, I had complications. I had to go back to the hospital because I started to have a fever. I had to spend a couple of days there getting blood transfusions and platelet transfusions. I had to get multiple of those. It was very tough on the body and mentally, too.

Balancing treatment and preparing for fatherhood

Managing all of that while preparing for a child was challenging. Every day, I tried to be positive. I would try to find one thing to be grateful for each day. 

There were a lot of long nights at the hospital, and you can get into a dark place when you are by yourself with your thoughts and things are not going well. You are losing your hair, your eyebrows are gone, your eyelashes are gone, and your skin looks dead. I was just trying to stay positive each day. I would get out of bed every day and try to walk for miles around in a circle on the unit, or on the treadmill in the hospital wing. I tried to do some workouts. I tried to always eat. I tried to really talk to the nurses and get to know them.

There is no perfect way to handle going through something like this, but I think having a positive mindset is extremely important, especially when your physical body is going through so much. You have to be strong mentally, or it is really easy to give up.

The birth of my son and the timing of my recovery

Being in the delivery room after my transplant

My wife gave birth after they declared me NED this time. It was about two to two and a half weeks after my stem cell transplant that she gave birth. I was able to be in the room for that, which was a phenomenal experience.

Our team of doctors did an amazing job getting all my treatments scheduled. I was very lucky that I did not have to do a third treatment of ICE. If I had, I would not have been able to be in the room for the delivery of our child. It worked out. I got my stem cell transplant, and I had to recover, but I was cleared by the doctors to be in the delivery room and at the hospital. At the end of the day, it was amazing because that was one of the things that was keeping me going throughout all my treatments. I had a picture of our baby from when he was in my wife’s womb, and I had it on the nightstand. I would look at that every night, and it definitely helped get me through everything.

Recovering from a stem cell transplant with my newborn child

Physical and emotional side effects after my transplant

The recovery was tough. There are a lot of side effects I never realized I could go through at a young age. I sometimes have neuropathy in my hands, which causes me to drop things. I was making my wife a bagel a couple of days ago, and I just dropped it and could not explain why. I have dropped iced coffees. I have heard that it is a common side effect that can go away, but early on, it was mostly fatigue. I did not want to get out of bed. Some days, I would just lie in bed, and it hurt to get out of bed.

Sleeping was hard. I could not sleep. I had nightmares and night terrors. I would wake up thinking I was at the hospital because you get woken up every couple of hours for blood work. It was tough. You also cannot see anyone. With a stem cell transplant, you have to isolate yourself because you do not have an immune system. It wipes out every vaccine you have had since you were a child. I was essentially just living within our walls unless I was going to the hospital for checkups. That is tough.

On the newborn part, that keeps you busy. It is one of the greatest feelings ever to be a dad, especially after getting through what I went through. Having my wife’s support throughout all of it is incredible. She was pregnant and my caregiver, which is insane to even think about. It should be the other way around. Unfortunately, these were the cards we were dealt. I had an amazing support system.

Today, I am about 91 days out from my stem cell transplant. My hair is starting to come back in, which is great. I am starting to feel better. But it is something I will have to live with for the rest of my life. I will have to make choices about things I eat, things I put in my body, and take my health a lot more seriously. It does not just go away once you are cancer-free. This is something you live with for the rest of your life.

Tips for recovering after a stem cell transplant

I would say, try to get up each day and do something for your body. It is really easy to get into a mindset where you are just going to rest. Rest is good, do not get me wrong, but you can get into a mindset where you do not get out of bed, and that becomes the norm. I have seen with myself that pushing yourself each day helps, whether it is walking up the stairs a couple of times, walking outside and getting some fresh air, or walking the dog. Just try to get on your feet and get out there. It is tough to just sit in bed and be in pain all the time. My recommendation would be to stay active.

The other thing is to try to find one thing to be grateful for every day. I think that is the most important part: your mindset. I would write down in my notes what I was grateful for each day. That would give me some strength to get out of bed, and from there, I would attack the day. Gratitude is a big part of it.

Isolation, immunity, and my new routines

Living in isolation after my transplant

The biggest challenge for me has been isolation. I do sales for a living, so before my diagnosis, I was hopping on planes and going out to meet customers. Now I am working from home every day, which is phenomenal for spending time with my son and my wife, but I cannot really go out and do the things I used to do. I cannot go to dinners or see people as I used to. I have to be really cognizant of my health and wear a mask whenever I am out and about. These are my new ways of life, at least for the foreseeable future.

You have to stay busy because every day feels like you are living the same day, and that gets taxing after a while.

What isolation means day-to-day

In terms of what isolation means, I actually built a gym in my basement because I will not be able to really be around anyone for a while, so I have been working out there. Isolation is essential until my counts — my blood counts and my system — stabilize. I cannot get vaccines until six months out. Usually, around that point, which will be around May, I should be able to start returning to a new normalcy. When I travel, I will still have to wear a mask, but I will be able to go out more.

For now, I can pick my spots. If I go grocery shopping, I can wear a mask, or if the store is empty, I can keep my distance from people and really make sure I wash my hands and do not touch my face. Truth be told, I do not really have an immune system this early on; it is still developing. If I get anything, what might be a common cold for someone else could be something that lands me in the emergency room. That is the last thing I want to happen at this stage.

On the lighter side, I have a newborn, so I can stay in and help out as much as possible. That is the excuse. It is the newborn and me; we are in the bubble together. The newborn is getting all his vaccines before me, which is pretty insane. My wife loves having a reason to keep visitors away. She has a nice excuse. She has been really happy about that because if that was not the case, I know family would be trying to come over, and it would be a zoo. It is nice to have this time for our family to focus on us and not have to deal with all the chaos that comes with having a newborn.

Survivorship, scanxiety, and giving back

What survivorship means to me

Survivorship for me is about giving back. It has always been my belief that when you get something or are able to get through something in life, you are supposed to give it away. I hope that the experience I had — the pain I went through and being able to come out on the other side — can offer hope and inspiration to someone new who might be going through this and is not sure what to expect. It is a lot to take on mentally when you are told you have cancer. If my message and story can help inspire someone and give them some hope and strength to get through this, then I hope they carry their story and message on to someone else. That is how a fellowship and community are built: people sharing their experience, strength, and hope, and inspiring others that they, too, can get through this.

Without that, it is just a dark place if you do not have folks on the other side sharing their stories and giving you hope. Survivorship is always about giving back. I am active in the Ride for Roswell, which is a cancer bike ride we do every year. That is something I am a part of. This year, they are doing a Light the Night event for lymphoma awareness, and I am going to be the speaker for that event. These are all things I am very excited about. I think it is important to give back when you can, and thankfully, I made it through on the other side, where I am in a position to do that.

Scanxiety and mental health support

There is definitely a lot of anxiety, and I am talking to a therapist about it. I think it is important to take care of your mental health. It is not a weakness to admit that you need to talk to someone and seek help. 

I would recommend that anyone going through something like this consider therapy. I would be shocked if someone did not have PTSD or anxiety after hardcore chemo and seeing the impact and effects it has on your body. I am working through the anxiety, but I have a good support system and a lot of loving people in my corner. I think with time that can ease a bit, and I can become more comfortable in public and get my confidence back. 

Encouraging other men to seek help

Advice for men on mental health and therapy

Mental health affects everyone, whether you are a man or a woman. It does not just affect you; it affects all the people around you. It is really important to recognize that and get help if you need it. There is no shame in getting help for mental health. I can promise you that if you get help, it improves other aspects of your life: your relationships with your family, your kids, your spouse, and your work relationships.

If you are struggling, get help. It took me a while to get to this point. I was always against seeing a therapist, but after seeing the impact therapy had on people close to me, I was willing and open to give it a shot. I have seen benefits from it so far. It is a good tool to have in your toolkit when it comes to recovery. Making sure you get help, being honest, and being open about what you are going through, and not being afraid to share your experience and encourage others to be open too — that is important.

My message of hope

How to stay hopeful through cancer treatment and recovery

My message of hope would be: do not give up. There are going to be really bad days in treatment and even in recovery, but hold on to the small good things every day. It could be waking up and feeling a little less sore, being able to stomach some food that you could not during treatment, being able to go for a walk, being able to work out a little bit, or being able to enjoy your favorite food again. Try to hold on to the little things people take for granted every day. When you are going through treatment, a lot of that gets taken from you.

It is important to celebrate small wins and not get too far ahead of yourself. It is a day-by-day process. If you take it day by day, celebrate small wins, and make the most out of s** situations when they come along, it puts you in a favorable position to conquer this.

At the end, I do not think there is anything more I need to add. That is my story.


James B. Hodgkin lymphoma
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Categories
Chemotherapy EGFR Lobectomy Lung Cancer Non-Small Cell Lung Cancer Patient Stories Platinol (cisplatin) Radiation Therapy Surgery Targeted Therapy Treatments Tyrosine kinase inhibitor (TKI)

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

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

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

Interviewed by: Ali Wolf
Edited by: Katrina Villareal

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

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

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

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

  • The power of incidental findings: Roxanne’s cancer was caught by accident during a scan for a different issue, highlighting the importance of following up on any unusual imaging results.
  • The reality of single parenting with cancer: Managing treatment side effects while raising a child requires a unique support system that often doesn’t exist in traditional clinical settings.
  • The importance of biomarkers: Understanding an EGFR mutation can change a treatment plan from traditional chemotherapy to targeted therapy pills, offering a different path for long-term management.
  • Advocating for clarity: Patients should feel empowered to ask for clear definitions of their staging and treatment side effects rather than relying solely on their own research.
  • Universal truth: Strength is not the absence of fear or stress, but the ability to keep showing up for those we love, even when our own bodies are under repair.

  • Name: Roxanne C.
  • Age at Diagnosis:
    • 43
  • Diagnosis:
    • Non-Small Cell Lung Cancer (NSCLC)
  • Staging:
    • Stage 3
  • Mutation:
    • EGFR
  • Symptoms:
    • None; incidental finding
  • Treatments:
    • Surgery: lobectomy
    • Chemotherapy: cisplatin
    • Radiation therapy
    • Targeted therapy: tyrosine kinase inhibitor (TKI)
Roxanne C. stage 3 EGFR+ non-small cell lung cancer

AbbVie

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


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

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



I didn’t have any warning signs.

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

Cancer diagnosis and stage

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

Who I am beyond cancer

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

Why I loved teaching special needs children

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

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

The unexpected discovery of a lung mass

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

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

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

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

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

My grandmother’s late lung cancer diagnosis

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

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

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

My grandmother’s mutation and difficult treatment choices

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

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

Delaying follow-up after the first CT scan

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

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

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

Second CT scan and emergency referral to an oncologist

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

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

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

First oncologist visit and biopsy decision

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

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

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

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

Hearing the diagnosis alone as a single mom

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

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

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

Shock, lack of information, and being the only parent

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

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

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

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

Lobectomy during the pandemic and going through surgery alone

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

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

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

Postoperative complications and sudden restaging to stage 3

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

Chemotherapy, radiation, and finding out about my biomarker

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

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

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

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

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

Learning about biomarkers while being overwhelmed by lung cancer treatment

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

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

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

Only hearing “stage 3 cancer” amid the information overload

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

Researching targeted therapy side effects on my own

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

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

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

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

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

How I learned what EGFR meant

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

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

Not feeling heard and worrying about my children’s risk

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

Daily life being on targeted therapy as a single mom

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

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

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

The emotional and financial toll of cancer as a single parent

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

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

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

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

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

My message to other single parents facing cancer

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

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

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

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

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

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

Finding strength and purpose through cancer

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

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

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

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AbbVie

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


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

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


More EGFR+ Lung Cancer Stories

Jennifer M. EGFR-positive lung cancer

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



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

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

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



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

Treatments: Clinical trial (targeted therapy)

Natasha L. stage 4 lung cancer

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



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

Treatment: Targeted therapy


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



Symptom: Slight cough

Treatments: Surgery, radiation, chemotherapy, targeted therapy
Jill Feldman, Lung Cancer patient advocate

Jill F., Lung Cancer, EGFR+, Stage 1A



Symptom: Nodule found during periodic scan

Treatments: Surgery, targeted therapy, radiation

Categories
Clear Cell Renal Cell Carcinoma Kidney Cancer Partial nephrectomy Patient Stories Renal Cell Carcinoma Surgery Treatments

The “Luckiest Unlucky Person”: Young Mom Laurel’s Kidney Cancer Experience

The “Luckiest Unlucky Person”: Young Mom Laurel’s Kidney Cancer Experience

Clear cell renal cell carcinoma (ccRCC), the most common type of kidney cancer, can sound clinical on paper. For Laurel, however, it was anything but clinical. Her experience unfolded in the middle of new motherhood, sleepless nights, and Manitoba winters as chilly as -40°C (-40°F). At 33, Laurel was enjoying maternity leave with her baby when a sudden, excruciating gallbladder pain sent her to a rural emergency room. Imaging to confirm gallstones also revealed a tumor on her left kidney, leading to a diagnosis of early-stage clear cell renal cell carcinoma and a plan for partial nephrectomy.

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

Before the diagnosis, life felt full and ordinary in the best way. Laurel describes how she finally loved being a mom after a difficult first few postpartum months, and savoring simple joys like skating, building backyard toboggan slides, and tending her white picket-fenced garden. That everyday joy made the call confirming that she had kidney cancer, which she received on her husband’s 40th birthday, all the more surreal. Her family doctor was direct about the likelihood of cancer, and a network of advocates, including an ER physician, nurse navigator, and urology team, moved quickly to get her into surgery.

Laurel M. kidney cancer

Laurel underwent a laparoscopic partial nephrectomy with the understanding that she might need to have a full nephrectomy if necessary. Pathology later showed cancer cells close to one margin, but her urologic oncologist was confident that the extensive cauterization eliminated any remaining cells. While the clear cell renal cell carcinoma was addressed surgically, Laurel required emergency gallbladder removal and an endoscopic retrograde cholangiopancreatography (ERCP) to diagnose and treat issues in her bile ducts and pancreatic ducts. She ended up spending more time in the hospital for these complications than for the kidney surgery itself.

Emotionally, Laurel describes compartmentalizing to move through crisis — delegating research to her sister in clinical research, childcare to another sister, and advocacy to a cancer nurse navigator. The most painful moment came when she realized she needed to write a will and create memory albums for her young son, in case he grew up without remembering her. Over time, therapy helped her process the experience. Hearing “no evidence of disease” on an early CT scan brought profound relief and, unexpectedly, improved mental health; she now cares far less about others’ opinions and more about being present for her child and listening closely to her body.

Watch Laurel’s video and read through the edited transcript of her interview for more about her kidney cancer story.

  • Listening to new, severe, or persistent symptoms, like Laurel’s gallbladder attack, can sometimes reveal serious conditions such as early-stage kidney cancer and change the course of care
  • Delegating both the emotional and logistical load to trusted people, like family, nurse navigators, and clinicians, can make complex treatment and recovery more manageable
  • Taking symptoms seriously and advocating when “something doesn’t sit right” is not overreacting; it is an essential part of your health experience
  • Complications from treatment and other health issues, like gallstones, cholecystitis, and pancreatitis, can be more painful than kidney cancer surgery itself, and deserve equal attention and support
  • Laurel describes a powerful transformation: what she expected to be a long-term mental health burden instead became an experience that clarified her priorities, reduced worrying about others’ opinions, and deepened her focus on her son and her values

  • Name: Laurel M.
  • Age at Diagnosis:
    • 33
  • Diagnosis:
    • Kidney Cancer (Clear Cell Renal Cell Carcinoma)
  • Staging and Grade:
    • Stage 1, Grade 2
  • Symptom:
    • Gallbladder attack resulting in extreme pain in sternum
  • Treatment:
    • Surgery: partial nephrectomy
Laurel M. kidney cancer
Laurel M. kidney cancer
Laurel M. kidney cancer
Laurel M. kidney cancer
Laurel M. kidney cancer
Laurel M. kidney cancer

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

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



My name is Laurel

I’m from Manitoba, Canada. At age 33, I was diagnosed with clear cell renal cell carcinoma. It was stage one and grade two. 

This occurred in December 2024. I had my partial nephrectomy in January of 2025.

Hobbies, passions, and life in Manitoba

I really love just being outdoors any chance we get. 

We get all four seasons here. It goes from plus 40 Celsius sometimes in the summer on really hot days to almost minus 50 Celsius on cold days in the winter. Any chance we get the in-between weather, we are outside, whether it’s on the skating rink or building a toboggan slide in our backyard,  or we are just in the front garden. We live on a little river. I literally built a white picket fence around the garden at my house and attempt to garden when I have time. Some years are easier than others, but even when it’s weedy, I still find a little bit of joy in it.

I had a gallbladder attack that revealed I had kidney cancer

I was home alone with my son, who at the time was around nine months old, and I started getting this extreme pain in my sternum. It almost felt like a heart attack, to the point where it got so bad that I was afraid that if I called 911, they would not get to me in time. It was so extreme that I could not breathe. I live five minutes from a hospital that sometimes has an ER open. I took a chance and drove my son and myself there, basically hobbled through the door with him in one arm, and they ran to me, grabbed my baby, and immediately got me in. They did an EKG to make sure it was not a heart attack.

Thankfully, the ER doctor who was there that day had also had a gallbladder attack when she was postpartum after she had a child. It can be pretty common after pregnancy, and she recognized the symptoms right away and said, “This is a gallbladder attack.” Because I live in a rural area, that hospital did not have what they needed to do the ultrasound to confirm it. I had an appointment at a different hospital that I went to for that. 

When they did the ultrasound to confirm the gallbladder attack and find the gallstones, which they did, they also found a tumor on my left kidney.

Hearing there was a tumor on my kidney

I have a really good family doctor, and he shoots it to me pretty straight. I am the kind of person who appreciates that. I do not like sugarcoating things that are not sugarcoated. If it is bitter underneath, do not try to trick me with sugar on it. So he was pretty honest with me and said that most kidney tumors end up being cancerous.

The ER doctor from our rural hospital, when she got the report, even though I was technically not a patient there anymore, gave me a call and said she was referring me for an urgent CT scan. She went above and beyond as well. Then my own doctor was looped in, and that is how the process went once I found out it was a tumor. It was actually my husband’s 40th birthday, December 5th, when I got the call saying it was cancerous. After the CT confirmed it as much as a CT scan can, they did it with dye and were basically 99.9% certain it was cancer at that point.

Life as a new mom before diagnosis

Life was really good. The first three months of postpartum were really rough, but I was finally in that stage where I was loving being a mom. 

I was getting some sleep, and I was on maternity leave because in Canada, you can take up to 18 months. I had planned to take about 14 months, so I was getting close to the end of my maternity leave. I was really enjoying my time with my son, spending more time with family, and just really loving life.

Getting the exact kidney cancer diagnosis

Once I received the pathology report, they told me what type of kidney cancer it was, how aggressive it was, and were able to confirm it did not enter the vein there as well, so how likely it would be to spread. The pathology report gave those details. My family doctor got it before I even had my appointment with my urologist–oncologist. He gave me that printed-out report, which was really good.

By the time I went to see the urologist, the student there came in to try to give the report and misinformed me, telling me my margins were all clear. They actually were not, which I already knew because I had the pathology report myself. I just said, “No, they are not.” Then my oncologist came in and explained that, unfortunately, there was a little bit missed that did not look like a tumor. They had cut a really good size around it, and there were still some cancer cells found in one of the margins. He said that with the amount they had to cauterize my kidney, it is highly unlikely that any cancer cells were left. The cancer cells were still contained within the margin, so they did not hit the actual outside. He was pretty confident that, despite the margins not being clear, the cancer cells were all removed.

My kidney cancer treatment plan and surgery options

The first option was a laparoscopic partial nephrectomy. Based on the imaging they had, they said once they were in there, they might need to do a full nephrectomy and open surgery. 

I signed off on all that ahead of time as well — basically, do what you need to do to get it out. The plan going in was always surgery based on the information we had.

Going in for kidney surgery

It was really an out-of-body experience because this all happened so fast, thankfully. Here, urology is really backed up. Most people have to wait months to get even cancer surgery. I had a lot of people on my team who pushed it forward more. They do not often see young moms come in with kidney cancer, so I think they were really empathetic to the fact that I am not an 80-year-old man. I am a young mom with a child at home. I had a baby in their office with me, and I think that had an impact.

There were numerous people. I had a nurse advocate who called offices, took the time to explain my situation, and really pushed forward for me to have that appointment sooner. I found out about the tumor at the end of November, got the call on December 5th about it likely being cancer, and by January 3rd, it was time for my surgery. 

It all happened so fast that I think I was temporarily emotionally paralyzed and was just so excited that I did not have to wait. The worst stage of cancer is the wait between when you find out and when a solution starts to take action. I was very fortunate that I did not have to linger in that phase as long as a lot of people do.

Recovering after my partial nephrectomy and gallbladder surgery

I could not lift my baby for six weeks. That was really hard. They had not taken out my gallbladder yet because they were just kind of like, “Who cares about the gallstones? We need to get rid of this cancer.” They hoped the gallstones would not cause me trouble. Three days before my partial nephrectomy, I started projectile vomiting again and having episodes from the gallstones. Because the surgery for my kidney was on my left side and the surgery for the gallstones would be on the right side, they did not have the capacity to tackle both at the same time, and at the time, they did not think they needed to. They thought I was just having an episode and hoped I would not go through it again during recovery.

By mid-January, I started having severe gallbladder attacks, which compromised my comfort during recovery. I ended up back in the hospital needing emergency surgery to have my gallbladder removed about two weeks after my partial nephrectomy. They had wanted to wait at least three months to put me under general anesthesia again, ideally. There was no option at that point. I could not eat or drink fluids at all without getting severely ill. Because of the wait to remove my gallbladder, I developed cholecystitis, inflammation around the gallbladder. The gallstones had traveled outside of it. I developed jaundice and started turning yellow. I was like a Simpson at one point.

This was even after my gallbladder was removed. I ended up being in the hospital longer for that than I did for my partial nephrectomy, because I needed an ERCP to remove the gallstones and then developed pancreatitis. That was the month of January. The first bit of my recovery looked like a fluke situation where, wow, thank goodness this gallbladder attack helped catch my cancer, but it was very painful and compromised my recovery. I had two surgeries back-to-back and then, as I said, developed jaundice and pancreatitis because of the stent they had to put in because of the gallstones. I was not fully pain-free until about May.

Comparing pain: Kidney surgery vs. gallbladder complications

It is a tough call. The gallbladder issues were more painful in the moment than the partial nephrectomy. When I gave birth, I had to be induced without an epidural, which was highly painful. I do not recommend it. The gallbladder pain was up there with that, but for days and days and days. I would say the whole jaundice, pancreatitis, gallstone situation was a lot more painful than the partial nephrectomy.

Thankfully, they managed to do the partial nephrectomy laparoscopically. It was still very sore, and I had to regain muscle mass, deal with scar tissue, and pain from the cauterization they had to do on my kidney. I developed a bit of a hematoma from that. 

Overall, the complications I had from the gallstones were more painful than the partial nephrectomy, but the pain specifically from the partial nephrectomy lasted until about May before it was fully gone. That was because of the hematoma, they said, mostly because they had to cauterize so much.

Processing a kidney cancer diagnosis after everything happened so fast

I did not process it until afterwards. When going through a crisis, I turn off the emotional side of my brain and think, “I have to think logically.” Because it was so extreme, I had moments where that would slip, and in those moments, I thought I was going to have a panic attack. Then I would collect myself and say I needed to focus on problem-solving: how can I get this fixed as fast as possible, and who can I delegate to?

I like to research a lot and know my stuff, but my sister works in research as a project coordinator, so I knew I could rely on her to read the studies and advocate for me. She came to a lot of my appointments with me. I delegated tasks to her to take care of a lot of that for me. My other sister was basically my nanny and took care of my son a lot.

The hardest part emotionally: Writing a will for my son

The hardest part emotionally, before surgery, was realizing I did not have a will and that I had to write that out for my son. I still get emotional about it, because no one wants to write that when they are faced with a really serious situation. It is something I wish I had done when life was fine. It puts you in a spot where you are thinking, “What if something does happen to me, and he will have no memories of me?”

I put together an album on my computer of a bunch of photos and memories for him. I wrote him a letter and put together a general will as well, making sure I had all my affairs in order. That was hard to do after such a serious diagnosis.

Coping with kidney cancer as a young mom

I manage by knowing what is in my control and what is not, and knowing that once I have the information, I can problem-solve and do the best I can with the cards I have been dealt. I cannot choose those cards. I am not the dealer, but I can choose what I do with them and how I manage them. I always joke that I am the luckiest unlucky person ever, because of the number of times I have heard the word “rare” the last couple of years, but then something miraculous always happens. Getting in for my surgery on January 3rd, even though I was told it would be months, is an example.

I manage by believing that it is going to work out, not just by relying on miracles, but by finding solutions to help push it along, and making sure that if there are miracles going to happen, I do everything in my power to assist that.

How cancer changed my outlook on life

I definitely look at life differently now. It is one of those “Be careful what you wish for” things. I used to think it would be nice not to care so much what other people think. I want to be the best mom I can be, and to be that, I need to make sure I am putting my son before other people’s thoughts. When you get diagnosed with cancer, it has a funny way of suddenly making you really not care what other people think, and realizing that your life is yours and that it can change rapidly, even overnight.

Imagine it being your last day and making decisions based on the thoughts of others — not even their actual thoughts, but your thoughts of what other people’s thoughts are, which are not always accurate. We always have this narrative in our head, especially as women, of what other people are going to think if we pursue this or if we do that. Often, it is a narrative we have made up ourselves. Even if it is not, who cares?

Seeing “No Evidence of Disease” on my scan

I found out I had no evidence of disease when I had a CT scan earlier than planned. My family doctor ordered it because of the pancreatic stent. Because of all the gallbladder issues, I ended up having an earlier CT in May, and it came back showing there was no cancer. There was no evidence of disease.

It was such a weight off my shoulders. It was such a good feeling. It gives you more mental freedom. I know that can change. I have my one-year follow-up coming up in January, but I am not really worried about it. The strange thing is, I thought this would impact my life in such a negative way mentally, and it has kind of had the opposite effect.

Mental health after cancer and the role of therapy

I thought I would live my life in worry and be so paranoid. There are moments of that — anytime something happens, or you get sick, you get worried, or you have pains. Nowadays, people see things on the internet and worry like that anyway. If anything, the cancer has helped my mental health in the long run. Once I went to therapy and processed a lot of it and addressed how I felt about it, that was important.

Overall, the negatives have not outweighed the positives. The negatives really do not outweigh the positives of it mentally, because it has released a lot of nonsense from my mind that did not matter.

Advocating for myself and support from my care team

I did have to advocate for myself, but I also had a lot of help. There was my doctor, my sister, myself, and then the cancer care nurse advocate. I forget the exact title, but it is a program in Manitoba for people recently diagnosed with cancer. Those nurses help bridge the gap to make sure no one slips through the cracks. Their job is to advocate for you and connect you with resources for you or your family, mental health resources, information, and someone you can reach out to with questions while you wait. She really advocated for me.

Even the receptionist at the urology office played a role in advocating for me because she was the one who talked to the nurse. Everyone played a part. My oncologist–urologist also advocated for me. When I had my initial appointment with him, he said it would probably be a couple of months until he could get me in. I said okay. A couple of hours later, when I got home, an unknown number called. I picked it up, and he said, “Laurel, it is Dr. Sharon.” I said, “Oh, hi.” He said, “How does next Friday sound?” I think it was about a week and a half from my first appointment with him to when he booked me in for surgery. A couple of hours earlier, he told me it would be months, and it ended up being days.

He and the team really played a role. I can only imagine he had to manage his schedule, call up anesthesiologists, and not overpromise in my appointment. This was right after New Year’s. For all I know, maybe he even had the day off. There were strings pulled, and they suddenly got me in within a couple of days.

Navigating motherhood while facing cancer and my son’s illness

There have been some hard times. My son had recently been sick. He is such a happy little guy. He makes being a mom so easy. He is so funny, and I truly enjoy his company. He is such a character. On October 6th, he spontaneously stopped walking out of nowhere. He went from being a super-active, typical toddler boy to not walking, irritable, having all these issues, and not eating.

I took him to the hospital five separate times. They said it was some form of post-viral illness and eventually thought it was post-viral arthritis. Something did not sit right with me. It just did not make sense. I kept advocating and took him to his pediatrician, who assessed him and agreed it did not seem like post-viral arthritis. I called rheumatology, where he was referred, talked to the nurse, and said I needed an immediate reevaluation. They got us in as soon as possible and referred him to a neurologist. There is only one pediatric neurologist who does these tests between Manitoba and Saskatchewan.

As soon as she was back in Manitoba, she saw my son, did the tests that were required, and confirmed he did not have post-viral arthritis. He had Guillain-Barré syndrome. It is a post-viral illness that attacks the nervous system. That was five weeks of him being unable to walk on his own, and he has recently started walking on his own again. He is such a trooper. She said he should have been immediately hospitalized and treated with a drug that calms down the immune system, and we are very fortunate that, miraculously, he just started recovering.

I was back at work for two weeks. I had taken time off work to process everything from the cancer and make sure mentally I was able to take that on again. I was back for two weeks when this happened, and then had to go back on unpaid leave to take care of him. I have been off since around October 6th, just caring for him at home until he is better.

Hearing “It’s so rare” again and again

They said those words again: “It is so rare.” It is so rare, especially in toddlers. 

I would prefer not to hear that phrase anymore.

Advice for others facing cancer or supporting a loved one

Delegate to people you trust. Delegate the mental load and the physical load. People will hopefully step up for you and offer, and when they do, accept that help. I do not know what I would do without the people who helped me, whether emotionally or by taking care of my son. I could not hold him for six weeks, and my husband had to go to work because I was not working. We were not expecting me to be off work that long. Accept the help.

Another thing is to try to live within your means in case this happens to you. When something like this happens, it is going to be a financial burden. Having savings or making sure you are living within your means and not stretching too thin, even if you seem healthy, is important. You just do not know. That can mean life insurance or other insurance that covers you if you get cancer or need time off work. Find a way to prepare financially for emergencies like this.

Financial preparedness and the cost of cancer and caregiving

It is important. I do not know what I would do if I had to go back to work sooner than I did, or even now. I had to prioritize my health and then prioritize my son’s health. It is bad luck that all of this happened within one year, during which I could not work again. It is mind-boggling. 

Had we not been in a financially safe space, the stress that finances can cause — I cannot fathom how much worse this would have been.

Listening to your body and not delaying care

Some topics feel almost too sensitive because you do not want to scare people. You hear how rare it is in young people for this to happen, but then you are also hearing how often it is happening now in young people. Do not delay if you notice serious, consistent changes in your body. Not every cancer will have signs, but sometimes whatever else is going on in your body might be trying to point you in a direction.

In my case, it was not my kidney cancer that made me go to the hospital, but I listened to my body and went to the emergency. In the past, I was not always good at that. I would go to the doctor too late for things. The timing lined up so that it helped catch something else. Even if cancer does not produce symptoms, something else might, and it can help save your life if you listen to your body.


Laurel M. kidney cancer
Thank you for sharing your story, Laurel!

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Stage 4 Stomach Cancer: Lisa Balances Cancer and Being a Mom

Living With Stage 4 Stomach Cancer: How Lisa Balances Cancer and Life as a Mother

When Lisa had trouble swallowing a hamburger on her 35th birthday, she had no idea it would be the beginning of a stage 4 stomach cancer experience that would touch every part of her life. What started as difficulty swallowing and severe acid reflux quickly escalated to an endoscopy that revealed two tumors and a biopsy report labeled malignant. In January 2021, at age 35, Lisa was told she had stage 4 stomach cancer, with disease in distant lymph nodes, and suddenly the milestones she imagined, like visits to children’s museums, kindergarten drop-offs, and 10th‑anniversary trips, felt painfully out of reach.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

From the start, Lisa trusted her intuition and insisted that something was wrong. With the support of a proactive primary care clinician, a responsive GI specialist, and an oncology team willing to think outside the box, she pursued aggressive stomach cancer treatment: chemotherapy, immunotherapy, radiation, and, eventually, a total gastrectomy. She describes trying to prepare mentally for losing her stomach as “a crazy thing,” especially the moment surgery was initially cancelled just three days before it was supposed to happen, because imaging showed progression. Still, she and her husband weighed the pros and cons and fought to reach the point where stomach removal became possible.

Lisa B. stomach cancer

For Lisa, living without a stomach has meant relearning how to eat: tiny, frequent meals and careful pacing, knowing that overeating or too much sugar can bring her to the point that she needs to lie down. Her first year after surgery was especially hard, yet she emphasizes that it is possible to live without a stomach and that she now eats and drinks almost anything in moderation. Maintenance immunotherapy every five weeks, ongoing scans, and Signatera blood tests are part of her “new normal” as she focuses on staying stable rather than chasing the word “cured.”

Five years into her stage 4 stomach cancer experience, Lisa has transformed from a terrified young mom who doubted she’d see her son start kindergarten into a powerful advocate. She co‑founded the Strides Against Stomach Cancer Walk in Wisconsin, travels to Capitol Hill for Advocacy Day, and proudly wears periwinkle, the stomach cancer awareness color, with her family. She urges others to trust your body, find your support system, ask for second opinions when needed, and keep living: one milestone, one walk, one day at a time.

Lisa’s video and the transcript of her interview below provide more details about her story.

  • Trusting your own body and speaking up when something feels “off” can be lifesaving, especially when early stomach cancer symptoms look like common reflux or indigestion
  • Patients deserve to ask questions, get second opinions, and seek care teams that truly listen. No one should feel guilty for advocating for their own health
  • Aggressive treatment plans, including total gastrectomy, can sometimes open options even in stage 4 stomach cancer, but they require weighing risks and benefits based on each person’s goals
  • Life without a stomach is challenging but possible; with time, support, and trial and error, many people, like Lisa, learn to enjoy food again in smaller portions and more mindful ways
  • Lisa’s transformation from “just trying to survive” to leading fundraising walks and traveling to Advocacy Day shows how living with stage 4 stomach cancer can evolve into purpose‑driven advocacy

  • Name: Lisa B.
  • Age at Diagnosis:
    • 35
  • Diagnosis:
    • Stomach Cancer
  • Staging:
    • Stage 4
  • Symptoms:
    • Trouble swallowing
    • Acid reflux
  • Treatments:
    • Chemotherapy
    • Immunotherapy
    • Surgery: total gastrectomy
    • Radiation therapy
Lisa B. stomach cancer
Lisa B. stomach cancer
Lisa B. stomach cancer
Lisa B. stomach cancer
Lisa B. stomach cancer
Lisa B. stomach cancer
Lisa B. stomach cancer

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

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



I’m Lisa

I was diagnosed in January 2021 with stage 4 stomach cancer, and I am from Milwaukee, Wisconsin.

A few of my passions: Our family really likes to stay really busy. We really like to travel. We like to see a lot of different new states. We have a state map that we scratch off when we go to a state together, which is really fun, just to help us go to new and exciting places.

We definitely like to travel. We’re the type of people who, when we’re on vacation, we are running. We’re seeing all the sights because we don’t know if we’re going to get back there. We really try to cram in as much stuff as possible. We’re not a huge lounging-around-vacation type of family.

In everyday life, it’s kind of the same thing. My son is seven right now, and we stay very busy with that. He’s really into sports. Then we each have extracurricular activities as well, so just managing all of that. I’m really into reading books and my book club, and just doing a lot of stuff together as a family and with friends.

Parenting with stage 4 stomach cancer

My son was two when I was originally diagnosed, so he’s kind of not known anything else. From the get‑go, a two‑year‑old doesn’t really understand what’s happening, but we really try to be as open as possible with him.

We’ve now done two fundraising walks, and I feel like that’s kind of a nice reminder. Even if I look okay all the time, it’s a reminder that we’re doing this because Mama still has stomach cancer. He knows when I go to the doctor — I go to the doctor about every five weeks at this point. So it’s just kind of a constant reminder of, nope, I still have stomach cancer. I am still sick. I’m still fighting this.

It’s something he’s just grown up with. To him, it’s very common. Also, just funny things: he’ll tell people, “Oh, yeah, my mom doesn’t have a stomach.” People are like, “Wait, what are you talking about?” They think he’s just saying crazy kid stuff, but he knows. He knows a lot of different things about stomach cancer that a seven‑year‑old really shouldn’t have to know.

I think when I was originally diagnosed with stage 4, it was really shocking and not what we expected. We have always been open with our son because we didn’t think we would be here at this point. We thought we’d only have a few years together.

January will be five years since I was diagnosed. We never thought I’d make it there, so I think it was really important from the start that we had to be open with him. We had to share that, just to be realistic.

Every once in a while, he gets really nervous. He’ll just say, “Well, I don’t want to die.” And I’m like, “Oh, honey, you don’t have to worry about that.” I think it has really forced him, as a young child, to have to think about those things.

He’s been really sweet, even through treatment. Every treatment has been kind of different in how it affects me, but there are some days I really can’t get out of bed. I’m just lying there, and he’ll be really sweet and come in. He’ll be like, “Good night, Mama,” and he just knows he needs to be quiet, and I’m not able to help with things and stuff.

So for him to pick up on that is awesome.

My first symptoms

In 2020, I was trying to get healthy, lose weight. I was working out a lot. I was eating healthier. Then it was on my 35th birthday in October 2020. I was eating a hamburger, and I had trouble swallowing it, which I had never experienced before. It got really stuck in my throat, and I was like, “Oh, that’s very weird.”

After that, I had about a week of really bad acid reflux, and I went to the doctor right away because, again, that’s not something I had ever had before. My primary care doctor really jumped on it right away, which was awesome. She got a lot of testing done. I started on Prilosec to try and see if that would help. It did help a little bit, but after two weeks, it still wasn’t back to normal.

I knew what my body normally was, and it wasn’t back to that yet. So we kept pushing for more testing. I did a swallow test. They thought I might have an ulcer. Ultimately, it was New Year’s Eve 2020. I had an endoscopy done.

The endoscopy changed everything

My husband didn’t come in with me or anything because this was in the height of COVID, but they called him and said, “We actually do need you to come in.” Then they told us they found two tumors in my stomach and that they had biopsied those.

It was not the news we were expecting to hear. It was not a routine endoscopy but something way worse than what we thought it would be.

After that, it felt like so long — it felt like weeks — but it was truly, I think, four days. We waited to get a call, and I received a call from the GI doctor that said the biopsies came back and they were malignant, which just kind of shattered us.

We were lucky enough to be working from home at that time because it was during COVID. That was one benefit — that we were there, my husband and I, to get the news together, process it together, have time to step away, which was helpful. 

Everything moved really quickly after that: additional testing, meeting with doctors and oncologists, and setting me up for what the next steps were.

The importance of advocating for yourself

I feel like I’ve been really lucky along the way that all of my doctors have really taken anything I’ve said seriously. But I think it comes back to, you know your body the best. I knew this was something that was not right, because they easily could have brushed this off and just said, “Oh, that’s just getting older. That’s just being a woman.”

I knew it wasn’t that because I had never experienced it before. I was very lucky to have doctors who really did support me along the way. My primary care doctor and even my GI doctor really got me hooked up with an oncologist right away because it’s a scary thing, getting a cancer diagnosis. We wanted to jump on it.

He suggested one person. It really wasn’t a right fit for me. I did find a different oncologist. But even his saying, “I know someone who can get you in right away,” was very helpful from the start, and I’ve been really blessed with my care team at the cancer center I go to.

They have been so forward‑thinking the entire time because I was young. I was 35 when I was diagnosed. Basically, they were like, “You’re young and otherwise healthy. What can we do that’s maybe outside the box and give you the greatest chance?”

Processing the diagnosis as a mom

That’s definitely the toughest part — thinking back to the beginning and looking through old pictures. It reminds you because it becomes your new norm, just living with cancer. Looking back at pictures, I’m like, “Oh, wow, he was so young.”

The biggest thing we always laugh about is that I always said, “I’m never even going to be able to take my son to a children’s museum.” This was January 2021. Things were starting to open back up, but very slowly. Then we got hit with this diagnosis, and we didn’t want to put me at risk either. So I was like, “I’m never going to experience going to a children’s museum, going on vacation, seeing him get into kindergarten” — things like that.

So it was really tough from the start.

What we were told about my prognosis

They actually didn’t put a number on it. On the back end, my husband and I were definitely looking at statistics. Back in the day, five years ago, for stage 4, it was only about 4%. That has changed since then, but seeing that number, we could read that ourselves: okay, this is not a good chance.

Basically, they said, “You need to be prepared, but also don’t stop living either. There are a lot of different treatments out there and different things we can try.” 

Research is always changing, which I feel I’ve really benefited from in the last five years. Things have advanced so much that I’ve been lucky to be able to do some of those treatments.

How we kept living

We did it in all the ways that we could, for sure. We try to — even now, whenever I’m feeling good, which is more often than not now compared to when I started. Whenever I’d be feeling up to it, we were always trying to do things together as a family, going to different things.

It’s nice that COVID kind of went away, and we could go and do more things. I was able to go to the children’s museum with my son. One of the big things when my husband and I got married was that we always wanted to go to Hawaii for our 10th anniversary. That was almost three years ago now, two and a half years ago, and we were able to do that.

When I was diagnosed, we never thought there was any way we’d be able to do that. We’ve gone on a family Disney trip. We’ve traveled all over and gotten to see a lot of great milestones with friends and family that we never thought would be possible.

We don’t stop, for sure. We are living it up as much as we possibly can because we truly don’t know. Things can change in an instant. A treatment can stop working, and I might be running out of options. We take that wholeheartedly, and we try and make the most of it.

How I balance everything

I rarely sleep. I feel like we were always a couple that burned it at both ends. Especially when we had our son, we wanted time after he went to bed to do things together or watch TV, play video games — things like that. That really has not changed.

We push it at both ends to get the most out of the time we have together, for sure. It’s still not enough time in the day. It’s very hard to balance. 

I work full-time. My husband works full-time. Our son is in every sport imaginable, so we’re always running between something. Somehow, we just make it work, and we prioritize the things that are really important to us.

What my treatment looked like

When I was first diagnosed, they found out that I also had a pulmonary embolism, and I was anemic right from the start. To start my treatment journey, I got my port placed really quickly. I received a blood transfusion. I received an iron transfusion. Then I started on a three‑drug chemo.

I did nine rounds of that. Our ultimate goal, even though I was stage 4, was to get a total gastrectomy, because my oncologist thought it would give me the best chance. After nine rounds, I had a great response. Everything was going well.

Then I did a CT scan or PET scan right before, and it showed that the cancer had progressed because we had to take a break from chemo. It was three days before my total gastrectomy surgery, and they had to cancel it, which was honestly one of the most difficult things.

Trying to prepare yourself to get a total gastrectomy is a crazy thing, because I didn’t know you could live without a stomach. I was getting excited, like, “This is going to be really good for me to survive.” Then, for that to be taken off the table was really tough. That was about July 2021. They said, “Okay, we’re taking that off the table for now.”

We started back on a two‑drug chemo with immunotherapy as well. They saw really great success with that. I did eight additional rounds. In November 2021, I was able to get my stomach removed because I had a really good response. That was in November.

After that, I started just immunotherapy, which I was on for about a year and a half. That treatment was keeping me stable. I was never cancer‑free, but I was always looking to stay stable. That worked for a long time.

I had to get off of that and took a little break. I did a full course of radiation to the abdominal area because they saw a few things they didn’t like cancer‑wise. I did a full course of radiation. Then I think it was the current treatment I’m on now. 

Just before Thanksgiving, I received my 19th round of a new immunotherapy. It’s different from the one I was originally on, and that has been keeping me stable for almost two years now, which has been going really well.

Why we decided on an aggressive treatment

Yeah, it’s kind of funny because I feel like sometimes I can just name off, “Oh, yeah, I did chemo and immunotherapy and radiation,” and it kind of loses how actually crazy that is and how many rounds I did. It has become common knowledge to me now. It is crazy when I name off all the things I’ve been through.

It was really important to me from the start to have an oncology team that was in my corner and really wanted me to get the best results possible. A lot of stage 4 stomach cancer patients are not able to get their stomach removed because it has already spread, and it’s just not possible.

I’m stage 4 because it spread to my distant lymph nodes. Their thought process was: let’s get the majority of the cancer out that’s in that stomach/abdomen region, and then work on treating those distant lymph nodes. You can’t really go in and hunt and peck and take out all of the lymph nodes because, one, they’re all over your body, and lymph nodes fluctuate even for normal people when they’re sick. That’s not possible either.

So the plan from the start was to keep those in check. My husband and I were all for it. We wanted to give me the best chance possible.

I think the hardest thing to come to terms with was the total gastrectomy. It’s such a shocking thing. You don’t know: is this going to work for me? It’s a huge surgery, a big recovery. Maybe it knocks me down too much, and I’m not able to recover enough to receive treatment after that.

But the pros outweighed the cons when we were looking at it, and that’s why we really were trying to push for that as well.

Preparing for my stomach removal surgery

The biggest way I prepared for my total gastrectomy was connecting with other people who had gone through this. I’ve been lucky enough to connect with a lot of people through a few advocacy groups. I needed to know: What did you bring to the hospital? What do I need to bring? What do I need to prepare for? How is this going to go while I’m in the hospital? What tactical things are going to happen?

I’m such a planner, and I needed that. I talked with a lot of different people and got great feedback. They were like, “Here’s a list of things to try,” like slowly eating afterward and what worked for them.

Right afterward, I received a feeding tube when I got my total gastrectomy done. Some patients do, some don’t. While I hated having it every single minute, it was a really nice safety net, just in case I wasn’t eating enough. The sheer volume of calories I could consume was so much less.

I had to constantly be eating, like every hour — “Okay, I’ve got to take two bites of yogurt, and I’ve got to drink my protein water,” things like that. So again, while I hated my feeding tube because it was such an annoyance, it was a really nice safety net to ease me back into it and not have me push it and maybe have complications.

Living without a stomach

The easiest way is that they cut out your stomach, and your esophagus is basically attached to your intestines. I really just don’t have that pouch where your food digests and sits for a bit. Things move more quickly through me, and I don’t absorb nutrients the same way. There are additional supplements you have to take when you don’t have a stomach.

Honestly, for me, the first year was really tough — learning to eat again and the amount. For me, going out and having food with friends has always been a big part of my life. I’ll go out and start eating and talking and forget about it, and then I overeat. It was something I probably did before, too, but now it’s even worse when I don’t have room for that. I know right away: “Oh, I really did push it.” Then I kind of have to go take a break or lie down a little bit, which is difficult.

It is possible to live without a stomach, which, again, I didn’t know before this whole experience. That first year was really tough, but now I’m really back to, I can eat and drink anything I want in moderation, I would say. Sugar is probably the number one thing that’s really hard on a lot of people. I love sweets, so I try and push it sometimes, but I know sometimes I’m going to have to pay the price for that.

Everything in moderation, just like everyone else, but just a little bit smaller.

Why this surgery mattered even at Stage 4

It was really big because, as I said, a lot of stage 4 stomach cancer patients are not able to get their stomachs removed. For me to have this opportunity felt like something I really needed to try and get to. 

We didn’t know if it was going to work, if there would be complications, or if the recovery would be too hard and my body would be too weak to receive treatment after that.

We didn’t know those things, but we took an educated chance and weighed our pros and cons to determine that this was really the right decision.

Helping people understand my diagnosis

I think at the beginning, there was so much support around my diagnosis and helping with things. After a while, people kind of forget. They just assume that you look great and you’re doing well, and they assume you’re cancer‑free, which is something I deal with all the time.

Especially in my job, new people will start, and you never know the right time to drop that bomb on people because it’s not the first thing I want them to know. There were people I had worked with for quite some time, and this past November, I stood up in front of everyone to let them know I had this walk happening and that I was a stage 4 stomach cancer patient. Some people were shocked. They were like, “I had no clue, and I work with you daily. I don’t understand.”

I think it’s encouraging and good that people don’t notice it, but also, you want people to understand that it is still a hardship, and going through treatment is really tough. I’m lucky I don’t have a ton of side effects, but I honestly probably have more side effects from not having a stomach — overeating, not eating enough, eating too fast — things that will put me down for the count.

It’s hard when people don’t realize it’s a daily thing. There’s not one day that goes by that I don’t remember I have stage 4 stomach cancer because of some random symptom or pain that rears its ugly head.

What I’m currently doing

I’m on immunotherapy right now, and I go every five weeks to receive that, which is nice. It’s not very disruptive to my schedule. It’s just one Wednesday every five weeks, and then I’m back to work the next day, which is great. I’m pretty lucky that I don’t have a lot of side effects at this point, and the ones I do have are really manageable.

It’s a full day that I spend at the cancer center. I go in, I get labs. They check all of my levels to make sure it’s okay for me to receive this treatment. It’s a good double check to see where things are. I go to that, I meet with the doctor, and he reviews everything. If there’s a CT scan — I get those every three months — we talk through anything new that popped up.

I also get a Signatera test, just to see where my levels are. A lot of people get Signatera, and they want their number to be zero. Mine has never been zero because I’ve always had cancer in my body, but we make sure it’s still a lower number. If that number starts to spike, we want to jump on it.

I’m lucky that I have a port, thank goodness, because my veins are so tired and small from being poked so many times. I got a port right away when I was diagnosed. This is actually my second port; I had to get it changed out. I go to the hospital and receive immunotherapy for over an hour. It’s pretty short, the treatment itself. Then I’m pretty much back to normal after that. You would never know that I received treatment that day.

I’m currently on maintenance immunotherapy. Our goal is really just to keep me stable for as long as possible. I’ll continue to do that until either the side effects don’t work for me or the cancer progresses and we need to look at other options.

Balancing a “normal” life

There’s not a lot of balance when you’re a mom, for sure. I’ve got to jump back in, and I need to parent right away — picking up my son, doing bedtime, doing laundry, doing the dishes, doing all those things. It never stops.

It gets exhausting, for sure. My husband and I would agree: our house is never in the state that we once would want it to be and have always wanted it to be. But it’s the trade‑offs. You do have to have balance, and the dishes can wait till tomorrow, and my house can look messy for a day, and it’s fine.

Sometimes it gets a little too overwhelming. Between treatment and family life and work and everything, sometimes it’s too much. We’ve kind of —  as much as we don’t like it — said, “You know what? The house can wait, or that other thing can wait, and it’s fine.”

How much I’ve learned in these last five years

Oh, I’ve learned so much over the last five years. It’s crazy. So much about cancer in general — just all the jargon and language you need to learn when you’re in the cancer world — has been a lot.

Also, I had so many mentors when I first started this experience, looking to them as inspirational stories because I thought there was no way I was going to get through this. Talking to some of those people, who have become some of my closest friends, was so inspiring. I was like, “Well, they can do it. They live without a stomach. It can be done.”

Now I’ve shifted to really wanting to give back and pay it forward.

Starting the Strides Against Stomach Cancer Walk in Wisconsin

I plan events in my job. So in 2024, one of my friends — she’s always wanted to do some kind of walk to raise money for stomach cancer because there’s really not anything local in the area. It’s a lesser-talked-about form of cancer, so we don’t have anything already set up. She said, “Let’s just start a walk,” and I was like, “I don’t think you know exactly what that means, but sure, let’s do it.”

In 2024, we started the Strides Against Stomach Cancer walk in Wisconsin. We had a pretty minimal goal. We wanted to get 100 people — everyone bring your friends and family — and raise $10,000 to support stomach cancer patients. We were blown away. We had 200 people come that first year and raised over $20,000.

We learned so much along the way, even with that. While I do events at a university, this is very different from doing a big fundraising walk, which I had never really done. We learned a lot along the way.

This past year, in 2025, we had our second year, and again, I was blown away. We had over 300 people and raised over $30,000. The support and awareness we’re bringing to stomach cancer in the local area has been so important to me.

One exciting thing this year: last year, five stomach cancer survivors came to the walk, and I knew every single one. I had talked to them all before. This year, we actually had three new‑to‑me stomach cancer patients register, which was awesome.

It’s really important to me. I want to connect with people and share my story and help them along the way if I can — just to share that not every treatment will work for everyone, but maybe there’s another option someone hasn’t thought about. I’m looking to connect with other stomach cancer patients locally and across the country.

It’s been really special to start some of those relationships and find the weird coincidences of, “Oh, yeah, my aunt passed away from stomach cancer.” Finding those little connections has been really special. When someone says they know someone with stomach cancer, I’m like, “Tell me everything.” I don’t know many people who have it.

I feel like I’ve switched gears now, and I really want to pay it forward and keep advocating, obviously for myself, but for the full stomach cancer community as well.

Why raising awareness matters to me

It’s really important to me, especially for current patients — sharing my story with them — but also bringing awareness to stomach cancer. It’s one of the most deadly cancers and definitely one of the most underfunded.

We go to Advocacy Day with an organization. We go to the Hill every year to ask for more funding for research, just to keep pushing that. I feel like treatment options are getting better and better, but they really need those research funds.

I don’t think people know about that because stomach cancer is a less talked‑about cancer. Just bringing awareness to it is definitely something that I’m looking to do.

It’s definitely a family effort, for sure. This past year, my husband was lucky enough to get a media spot to talk about the walk, and he’s so passionate about it and being such a champion for me as well.

It has become our personality, I would say. Every single day, you’ll probably catch one of us in a periwinkle color, because that’s the color for stomach cancer. One of us is wearing a walk shirt or periwinkle, or we’re talking about it. It is our lives, for sure, and we’re very passionate about it because it is so personal.

I truly never thought when I was diagnosed that I would be where I am right now. Honestly, from the beginning, my husband found an organization online and was like, “Hey, you can get a mentor through them.” At the beginning, I was not interested. I was just trying to survive. That was really what I was trying to do.

It was a slow process for me — reaching out to people and connecting with them. Then it was, okay, I’m going to participate in an online forum or an online support group. Then we decided we were going to go to D.C. and participate in Advocacy Day. It has been a slow build. I was really hesitant at first.

Now, as I said, it has become our personality. That is just what we are always talking about or doing because we are so passionate about it. I never once would have thought I would be where I am right now, five years later.

What I want others to know

I think a message I would leave with people is that cancer is a tough, tough experience. You need to find your support system, whether that be family, friends, or online. I’ve found some really deep, amazing connections with friends online. We’re always like, this is the best group to be in, but the worst group to be in because we all are affected by cancer.

Find your support system. Reach out. Make sure you’re talking to people. Make sure you’re advocating for yourself — that’s probably the biggest one. If you don’t like what your oncologist is saying or you don’t agree with them, get a second opinion. No one’s going to be offended if you get a second opinion on this because it is a rare cancer.

So definitely push for some of those things and find your support system.

I think the biggest thing for me — there were so many milestones I never thought I would reach. I uploaded a lot of photos that reflect it as well.

I talked about it at the walk this year. I never thought I would see my son going to kindergarten. He’s in first grade now. My sister told me, I think it was a year after I was diagnosed, she got engaged. They were going to have a long engagement, and I was like, “That is not good for me. I want to see you get married.” I was able to see her get married last year, which was super special.

This past October, I celebrated my 40th birthday with a bunch of friends in Las Vegas, which was so much fun. In January, it will be five years since I was diagnosed. All those big milestones are very meaningful for our family, for sure.


Lisa B. stomach cancer
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Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

Sarah’s rectal cancer experience highlights the importance of listening to your body, even when symptoms seem minor. Her story began with uncertainty and disbelief, but she quickly found strength in her support system and proactive medical team. After surgery, she faced a challenging six months of chemotherapy, balancing treatment with parenting and maintaining her identity.

Sarah G. rectal cancer

Throughout her treatment, Sarah remained open about her struggles and triumphs, from managing side effects to helping her children understand her diagnosis. She shares practical advice for patients, including the importance of undergoing colonoscopies, managing side effects effectively, and finding joy in everyday moments. Sarah’s experience is a reminder that rectal cancer can affect anyone, regardless of age or health status, and that early detection and a strong support network are crucial for recovery.

Watch Sarah’s video and read through her edited interview transcript below to learn more about her story.

  • Listen to your body. Even minor symptoms, such as bleeding or constipation, can signal something serious. Don’t dismiss persistent changes
  • Seek expert care. Sarah’s proactive medical team, including a tumor board, ensured she received the best possible treatment plan
  • Self-advocacy matters. Sarah encourages patients to trust their instincts and ask questions, even if they feel healthy or young
  • Support systems are vital. Family, friends, and medical professionals played a crucial role in Sarah’s recovery
  • Stay positive and resilient. A positive mindset helped Sarah navigate the emotional and physical challenges of treatment

  • Name: Sarah G.
  • Age at Diagnosis:
    • 38
  • Diagnosis:
    • Rectal Cancer
  • Staging:
    • Stage 2A
  • Mutation:
  • Symptom:
    • Minor and inconsistent rectal bleeding
  • Treatments:
    • Surgery: low anterior resection (LAR) surgery
    • Chemotherapy: FOLFOX
Sarah G. rectal cancer
Sarah G. rectal cancer
Sarah G. rectal cancer
Sarah G. rectal cancer
Sarah G. rectal cancer
Sarah G. rectal cancer
Sarah G. rectal cancer
Sarah G. rectal cancer

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

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



My name is Sarah

I am now 39 years old. I live in Boca Raton, Florida, and on January 31st of this year, 2025, I had a colonoscopy where a tumor was discovered. I was officially diagnosed in February with what was believed to be stage 1 rectal cancer. But after surgery in April, it was stage 2 rectal cancer.

About me and my passions

 My husband and I have two kids. My oldest is ten. My youngest is five. We’re big into just going out, exploring, having fun, traveling. My daughter and I do a lot of 5Ks together. She’s so into it now. We don’t quite run them because I have shin splints and she’s not a runner, but she’s starting to run them, and it’s really cute to see.

My initial symptoms

My symptoms started — well, at least started enough for me to pay attention — when I was pregnant with my son. He’s five now, so this was five and a half years ago. Towards the end of my pregnancy, I had what I chalked up to just basic pregnancy constipation and hemorrhoids. I didn’t really think much of it, but I remember distinctly towards the very end — like, two weeks before my scheduled C-section — I had an episode of bleeding. 

At the time, I didn’t really know where the blood was coming from, and I automatically assumed it was coming from the baby. So I went to the ER, and they did a full workup, and the doctor said, “Oh no, it’s just hemorrhoids or whatever.” I just kind of left it at that, had the baby, and went on with life. I never really had a recurrence of those symptoms to be consistent or to be fearful of anything. 

That was the craziest thing for me — I didn’t have any symptoms, really. When I did, when I had episodes of bleeding, it would come with constipation and would happen maybe once every two weeks, then once a month, then once every two months. It wasn’t consistent, so it wasn’t troublesome or scary for me at the time.

How I discovered that I had rectal cancer

So the symptoms actually did pick up in 2024. They weren’t scary. I didn’t have any other symptoms other than what felt like constipation with bleeding. I did have a little pain on the right side when I would digest food sometimes. I thought, “What is that?” I didn’t have an appendix, so I knew it wasn’t that. 

I thought, “I have really good insurance. Let me just make an appointment with a GI and see what he has to say — maybe it’s fiber supplements or something else.” My friend is a physician and recommended a good GI. I got in with his physician’s assistant, who’s actually my age and very proactive. She said, “It sounds to me like it’s just a little constipation, but I’m not okay with not sending you away with a colonoscopy script.” 

My appointment with her was in November. I had my colonoscopy in January.

Initial diagnosis to surgery planning

At the colonoscopy, there was a polyp described at the time, but it was 40mm, or four centimeters, like a grape. That’s what was protruding into my colon and causing the bleeding. After the official pathology, it was carcinoma. Then I met with the oncologist. Before surgery, based on the scope and initial CT scans, they said it was a stage one tumor, but after surgery, it was updated to stage two.

My pathology took two weeks to come back because my doctor sent it off to the Cleveland Clinic for testing. He kept in touch with me the whole time, which was so nice. Dr. Stern — shout out to him — was very proactive. The second he got the results, he called me at 8 p.m. and immediately got me in with a colorectal surgeon and an oncologist. The next morning, both called to set up appointments. The oncologist ended up taking my case to the tumor board, which was great — they all evaluate the best course of treatment.

Thanks to a friend who was a radiologic technician, I got in right away for scans. The best course of treatment was determined to be removing the tumor first, not chemo or radiation right away.

My surgery experience and recovery

After the initial tumor board meeting, my oncologist called regarding lung nodules found during my CT scan. With colon cancer, the lungs or liver are usual sites for spread. The nodules were small, so I saw a pulmonologist (also a friend), who got me in immediately and spent two hours exploring and taking biopsies. The pathology came back benign.

Once cleared, I proceeded with surgery scheduled for April 1st, 2025. Meeting my surgeon for the first time, I felt overwhelmed. The only previous surgeries I had were an emergency appendectomy and my C-sections. This was going to be an eight-hour surgery with multiple specialists involved, including urology for stents. I would need a temporary ileostomy. Processing all this was hard; my husband and I sat in silence for hours afterward. Initially, I hoped to avoid such extensive surgery, but less invasive options carried the risk of microscopic spread. Surgery was the safest choice.

I packed a full suitcase for the hospital, expecting a 5–7 day stay. I was fully prepared, but thanks to my active and healthy lifestyle, my surgeon discharged me the day after my surgery, which is not typical. I was up and walking; the ileostomy was manageable with the nurse’s help.

Follow-up and pathology

My surgery was on April 1st, a Tuesday; I was discharged on Wednesday. By Friday, my surgeon got the pathology back: Stage 2, no lymph nodes involved (24 taken). 

The tumor had high-risk characteristics: high tumor budding, lymphovascular invasion, and perineural involvement. It was staged as a T3 tumor. 

Due to these factors and my age (38), my oncologist recommended aggressive treatment. Chemo was the next step.

My emotional response to my treatment plan

I remember going to that oncologist appointment — I call him the Grim Reaper, because I always go in happy, expecting good news, and he brings new challenges. I went in not thinking I would need chemo, and left devastated. 

I called work and said, “I can’t come in today,” and cried for hours. Afterward, I accepted it — I had to get through six months of chemo.

Telling my kids

The little one didn’t understand much — he thought skeletons and X-rays were cool. My daughter, older, was upset because I wouldn’t be home the same day as with other surgeries. When she saw me home, well, she was okay. 

We had a “cancer” talk; for my daughter, I called it “bad cells” and explained we had to get rid of them. I still have a hard time saying the word “cancer,” even on medical forms.

Chemo: my plan and experience

After meeting the oncologist, I was set to do 12 rounds of FOLFOX. The tumor board did not see the need for radiation, thankfully. Radiation can be brutal. I received oxaliplatin and 5-FU, which was administered via a pump I brought home for 48 hours. My kids put googly eyes on the pump and called it a pineapple (it looked like a lemon).

I functioned at about 80% of my full capacity. Side effects included facial flushing, hair thinning (lost about 80% of my thickness), fatigue, mild nausea, and neuropathy. The oxaliplatin caused cold sensitivity in my throat and lingering neuropathy in my hands and feet. My tear duct in one eye constantly produced tears and mucus. Oxaliplatin was stopped after the seventh round due to a good response.

Chemo began in May, right after surgery and chest port placement April 23rd, continuing until October 13th for a total of six months.

Chemo delivery and my daily life

I’m part of the Baptist Health network in Boca Raton. The cancer institute has a chemo infusion floor where I received treatment. With oxaliplatin, I sat for 4–5 hours, then wore the pump home for 48 hours. All of my treatments were outpatient.

I was in the gym with my pump on (being careful not to lift or raise my heart rate too much). The nurse advised that if you elevate your heart rate too much, the drug can pump too quickly and cause side effects.

My hardest moments

Honestly, the beginning — before pathology, staging, or surgery — was the hardest. Not knowing was awful. So many opinions and messages from friends and family made things more stressful. Too many people were getting involved, many with unrelated advice. 

My husband tried to be supportive by talking to others, but it resulted in unhelpful feedback and pressure.

Balancing parenting and cancer

I think the hardest thing was being a parent with young kids during diagnosis. You start picturing them growing up without you — it’s terrifying. 

My life did not stop; everyone was shocked by my ability to maintain normalcy for my kids and myself. I was still social, still wore a bikini with my ostomy.

Ringing the bell and finishing treatment

I wasn’t expecting to get so emotional when ringing the bell. At the end, it hit me that I had beaten cancer. That relief—it was one of the top five moments of my life. 

We have such a great support system. My husband’s friends showed up with flowers and gifts, and the medical staff were all genuinely happy for me.

My life after chemo

Things are slowly returning to normal. Little hairs are growing back, and I finally had my port removed, a huge milestone — my oncologist trusted this part was over. I had my ileostomy reversed and had a few weeks with no medical care. Technically, though, I still had follow-up procedures. 

I’m still recovering, but looking forward to real normalcy: beautiful hair, simple pleasures like facials and getting nails done. I’ll never complain about my hair again.

I look at life differently now. Before, we were always going and doing and never stopping to enjoy things. Now, every day feels special — like a treat.

My advice to viewers

My biggest advice is: feel all the feelings. Allow yourself to be upset, grieve, but then push forward. A positive mindset really helps your outcome. 

Do your own research — Google may show you the worst-case scenarios, but it helps to be educated for your doctor’s appointments. Block out the noise from everyone else, go with your gut, and find a care team you trust. Be your own advocate.

I fortunately had good medical advocates, but many people get gaslit by doctors. For me, I gaslit myself, thinking, “It can’t be colon cancer, I’m too healthy.” 

Don’t dismiss your thoughts. Go get checked if something feels wrong.

I was terrified of colonoscopies, but honestly, it wasn’t a big deal. My advice: follow a bland diet five days prior — chicken, rice, applesauce. Stick to the clear diet and don’t panic about the prep: it does end. I looked at it like a detox, starting fresh. Now, I’ll do a colonoscopy every year if I need to, and I’m okay with that.

If you can get a Signatera test (by Natera), I highly recommend it. It’s a diagnostic tool for cancer recurrence. I had it done during surgery; if it’s positive after surgery, you may still have microscopic disease. I was negative each time, which is a good sign. Ask your doctor; it can also sometimes be done at the time of a colonoscopy biopsy.


Sarah G. rectal cancer
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