Nikoo Navigates Stage 4 Lobular Breast Cancer with Targeted Therapy
When Nikoo’s general practitioner felt a small lump beneath her arm, the scans showed nothing unusual. Still, something didn’t sit right with her. She trusted her instincts and pressed for answers, which led to an early-stage diagnosis of lobular breast cancer in 2003. Over the next two decades, she maintained regular screenings and genetic testing and navigated her role as a scientist, wife, mother, and grandmother. All the while, her cancer remained undetectable by traditional imaging, until it returned.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Nikoo’s vigilance paid off in 2022 when she experienced gastrointestinal symptoms and food sensitivities. Her tests continued to prove inconclusive, but her sense that “something was off” again persisted. Self-advocacy led to further exploration, and ultimately, surgery intended to remove her ovaries revealed metastatic breast cancer that had already spread to her peritoneum. The shock was twofold: not only did Nikoo awaken with a port in her chest, but she was also told that her breast cancer had returned after 19 years. This reclassified her case as stage 4 lobular breast cancer.
Never one to be passive, Nikoo deepened her involvement in the lobular breast cancer community, working with the Lobular Breast Cancer Alliance and speaking at medical conferences. Her advocacy focuses on the nuances of lobular cancer, particularly on how easily it evades detection, and underscores the importance of targeted therapies. After facing treatment challenges, including side effects, financial burdens, and rapid aging, Nikoo found empowerment through building a collaborative treatment relationship with a specialist who valued her input. The discovery that she had a PIK3CA mutation opened doors to clinical trials and underscored her belief that “knowledge is power.”
Nikoo’s lobular breast cancer experience has redefined survivorship for her. It is not just enduring, but supporting and thriving within a network of peers who understand the singular challenges of advanced cancer. She hopes for increased awareness, improved imaging, and changes in how the medical world understands and manages lobular breast cancer. Central to her advice is to trust one’s body and to seek community, because every patient’s story, including her own, can offer guidance and hope to others navigating their own lobular breast cancer experience.
Watch Nikoo’s video and read through her interview transcript to learn more about:
How trusting one’s intuition, even when diagnostic tests are inconclusive, is vital in managing one’s own health
Building a care team that respects and empowers patient voices
Survivorship for stage 4 patients involves thriving, supporting each other, and reshaping what survivorship means for the community
The impact of cancer, which isn’t only physical; financial pressures and emotional support systems also matter deeply
This universal truth: Sharing patient stories builds hope and community, reminding us that knowledge and connection are as critical as medicine
Name: Nikoo M.
Diagnosis:
Lobular Breast Cancer (Invasive Lobular Carcinoma (ILC))
Staging:
Stage 4
Mutation:
PIK3CA
Symptoms:
Gastrointestinal issues
Food sensitivities
Nausea
Treatments:
Targeted therapy
Hormone therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I have lobular breast cancer. I was diagnosed with stage 1 in 2003, and stage 4 in 2022. I live in California.
My husband Jim and I have been married for many years. We work together, live together, and do everything together. We have two sons, two daughters-in-law, and four grandchildren, ranging from four months old to seven years. We love being grandparents — it’s wonderful to spoil them and then send them back when they act up.
Navigating first signs and missed diagnoses
At age 42, I had a perfect mammogram, but my general practitioner felt something hard under my arm. Even though my scans were clear, a needle biopsy confirmed invasive lobular breast cancer that never showed up on my mammogram.
Emotional reactions and family support
My first reaction to the diagnosis was to hide it from my kids — I didn’t want it to affect them. Eventually, we talked as a family. Thank goodness for Jim; we had a running joke whenever I got emotional, he’d say, ‘soccer field’, just to help us smile and laugh through it.
Genetic testing and monitoring experience
I underwent genetic testing for BRCA1 and BRCA2, both were negative. The counselor found no cause for concern, so I thought it was just a fluke. Still, because I’d been a scientist in my past life, I continued annual monitoring. Nothing ever showed up.
Years between diagnoses and persistent intuition
I always felt the cancer was somewhere in my body, even if I had no symptoms. I maintained a relationship with an oncologist, always did my screenings — again, nothing appeared until 2022.
Recurrence: navigating symptoms and second opinions
In 2022, I developed GI issues and food sensitivities. Despite clear colonoscopy and endoscopy results, I knew something was wrong. I advocated for myself and had several scans and biopsies. Only after surgery to remove my ovaries did they discover that breast cancer had spread everywhere, covering my peritoneum.
Receiving the metastatic diagnosis
I woke from surgery expecting my ovaries to be gone, but instead found a port in my chest. That was the first shock. Later, the oncologist called — ‘The good news is you don’t have ovarian cancer. The bad news is your breast cancer of 19 years earlier has returned.’ I knew I needed different care.”
Advocating for lobular breast cancer awareness
As the diagnosis unfolded, I became active with the Lobular Breast Cancer Alliance and shared my story nationally to help others. I’ve spoken at conferences alongside leading oncologists to raise awareness about how easily lobular breast cancer is missed by imaging.
Building a new care team and finding specialists
Finding the right oncologist changed everything. She included me in treatment decisions and respected my input. I’ve been with her for two and a half years and have become deeply involved in advocacy and research.
Treatment decisions: CDK4 inhibitors and clinical trials
I started with a CDK4 inhibitor, the current gold standard. When my first oncologist didn’t know about liquid biopsies or PET scans, I sought a specialist who did. When CDK4 failed, my doctor quickly switched to the next appropriate therapy and got me into a clinical trial. The side effects are tough but manageable.
Research, mutations, and targeted therapies
I’m a researcher at heart. When I found out I had a PI3K mutation, I wasn’t surprised, but was relieved that there are drugs that can target it. I mentor other patients, reminding them that knowledge is power and targeted therapy is the future.
Challenges of living with cancer: financial, physical, social
One challenge no one talks about is financial toxicity. Even for us, handling thousands in unexpected bills was overwhelming. Cancer ages you quickly; within six months, I felt I’d aged a decade. Hormone blockers caused weight gain and rapid changes, which were hard to accept.
Sources of support: my family and the metastatic cancer community
Beyond my husband and family, the metastatic cancer community is incredible. We understand each other and are always there for one another.
Redefining survivorship in stage 4 cancer patients
Survivorship is a tricky word for metastatic patients. At a recent marathon, there was no mention of us. Survivorship means supporting others on the same path, being involved, and thriving —not just surviving.
Hopes for the future of lobular breast cancer
My biggest hope is more understanding of lobular breast cancer. Too few clinical trials exist. Too many patients are diagnosed late. We’re trying to spread the word and educate oncologists nationwide.
Advice for cancer patients: listen to your body
Trust your body. There’s no way I’d be here three years post-diagnosis if I hadn’t trusted my instincts. Symptoms were being disregarded. Women especially need to act when something feels off.
The importance of sharing patient stories
When I was diagnosed, I searched for other people’s stories — those stories gave me hope. Sharing experiences is vital.
Starr’s Stage 4 Colon Cancer Story Highlights the Importance of Second Opinions
At 44, Starr was living a busy, joyful life centered on her kids. “I’m most passionate about my kids,” she said. “Whatever they’re into, that’s what we’re doing. So whatever sports or school activities we’re going to, we’re always running kids somewhere, doing something with them, or having friends over.” She felt healthy and strong, but that changed when she was diagnosed with stage 4 colon cancer that had already spread to her liver and other areas. Her journey toward remission highlights self-advocacy, community, and a whole-body approach to care.
Interviewed by: Carly Knowlton Edited by: Chris Sanchez & Jeff Forslund
It all began with mild abdominal pain that didn’t feel right. Even though Starr was young and seemingly healthy, she trusted her instincts and insisted on getting scans after her primary doctor thought it could just be a UTI. Those scans revealed multiple liver masses, setting off a flurry of ER visits, biopsies, and the life-altering words: “stage 4 colon cancer.”
From the start, Starr understood that conventional medicine was crucial, but she also embraced alternative therapies and integrative medicine strategies. While her first oncologist focused solely on aggressive chemotherapy, Starr listened to her body and her intuition. She sought multiple opinions, discovered targeted therapy, and explored supplements, nutrition, and emotional wellness. This approach not only helped her endure treatment but also prepared her for two major surgeries, which successfully removed her colon and liver tumors.
Throughout the process, Starr leaned into self-advocacy. She didn’t stop at one opinion; she asked the hard questions, researched options, and refused to settle for a plan that didn’t feel right. Her persistence led to care that respected her voice and ultimately helped her move into remission.
Starr’s reflection on awareness is equally powerful. Colon cancer doesn’t always require a family history or obvious risk factors. Starr exercised, drank her green juices, and maintained a healthy weight, but she still got cancer. Her story is a gentle but firm nudge for everyone to listen to their bodies, stay proactive, and seek medical advice even if they believe they’re too young or too healthy to get sick.
Today, Starr calls herself a survivor and a thriver. She’s committed to living her days with gratitude and presence. She celebrates being able to take her kids to school, enjoy nature, and fill her calendar with meaningful experiences. She wants to remind us that while colon cancer might change your life, it doesn’t define it. You can nourish your body, advocate for yourself, and still live fully.
Watch Starr’s video and scroll down to read through the transcript of her interview for more on her story. You’ll learn about:
How she felt healthy, but still got stage 4 colon cancer
Why Starr refused to settle for one doctor’s plan
The whole-body approach that changed everything
How self-advocacy can save more than your life; it can save your hope
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I’m 45 years old. I was diagnosed last year with colon cancer. Stage four, because it metastasized to my liver and other locations. And I live here in Arizona.
I’m most passionate about my kids. Whatever they’re into, that’s what we’re doing. So whatever sports school activities we’re going to, we’re always running kids somewhere, doing something with them, or having friends over. Our lives revolve around the kids, which is how it should be. I love it.
When I first started feeling “off”
I was having a little bit of abdominal pain, and I thought, “Okay, well, this just doesn’t feel quite right.” As soon as I got the abdominal pain, I was like, “I’m going to urgent care.” So it was like two days. So I’m glad I didn’t waste time.
They thought it was UTI. I went to my primary school. I got a scan, and it showed all these masses in my liver. She wasn’t too concerned because of my age. Just being young. And I was healthy, too, but I wanted to do a CT or MRI or PET scan or something. And she said, “Okay, well, to ease your mind. Yes, of course, we’ll do the scan.”
The moment everything changed
That’s kind of a life-altering moment for sure. But I went to my follow-up appointment to go over the scan with my doctor, and she said that, you know, I almost had your husband come in with you for this to go over this, but because she personally knows my husband. But let him come in, and she said, You need to go to the emergency room right now. I have someone there. They will meet you.
So she got me right into the emergency room and set me up with somebody so I didn’t have to wait. And then they did the biopsy there at the hospital, and I found out very quickly. So it all happened really fast. They said, “It’s cancer in your liver, and it’s not the primary location. It actually started somewhere else.”
So that was all of a sudden. Not only did I have cancer, but I had metastatic stage 4 cancer. And it didn’t even start in my liver. It’s spread. It’s in other locations in your body as well. So, I just remember being in the hospital, and thank goodness my friend was with me, and she’s like, I’m going to get your husband down here now. He’s coming down. And it was very scary.
When you hear the words “stage 4” and “terminal,” that’s almost an out-of-body experience.
My treatment plan
My first oncologist was just focused on chemo. Regarding surgery, she was like, “Let’s not even talk about it, because we’re not there. You’re not even close to surgery. It is not an option. Maybe it will be, down the road, but for now, it’s in too many locations and the masses. We need to get the tumors down.”
I did five different treatments for chemo. One is a targeted therapy. I did the intense chemo for eight rounds.
What side effects I experienced
The biggest side effect was the most intense fatigue that you can imagine. I mean, even just talking, I’m sitting there trying to talk to somebody, and it’s just too much effort. Just, you know, keeping my eyes open. I had so much fatigue and nausea. I didn’t want to eat. I lost a lot of weight — over 30 pounds. And I didn’t have a ton to spare.
I also had pretty intense neuropathy in my feet. It’s still there. It could be permanent. I’m working on trying to fix that.
At one point, my skin was peeling off my hands and my feet because of one of the chemos that I was doing. It didn’t really hurt, but it was just really creepy to have your skin just falling off your body.
Right now, from the targeted therapy, I have a red rash. The skin is not like it should be. All through my back, my face, my chest, my stomach. So that’s an ongoing one.
I wouldn’t just be tired but exhausted beyond belief, and I would do the chemo treatments. So it would be like a week of just being down. I’m on the couch, I’m on the bed. I’m not going anywhere. I’m not doing anything. I’m not really eating due to the nausea. Because if I eat, then I throw up. So I want to avoid that. And then after that week, I just start feeling better. More normal. And then the second week would be closer to normal life, but still tired and all that.
But literally half the time, I was just completely not there, just not living my life. And it was really hard. And for my kids to sit there and see their mommy on the couch and go, “We’re going to go out and play,” and I couldn’t even get up to go out there and be with them. So I was losing a lot of time with them.
It was over four months total; I did eight rounds of that. And then after that point, I switched oncologists.
Finding the right care team
My original oncologist wanted to just continue that treatment regimen. And what I kept on hearing from not just him, but also from my second and third opinions, was that this is the standard of care. You continue doing chemo until it stops working, and then we switch. And to me, that didn’t sit right in my brain. So you want me to continue doing something that feels like it’s killing me.
I met my current oncologist at City of Hope, Orange County. He gave me information that I didn’t know about. “Hey, your liver is enlarging because of the chemo.” My oncologist never said that. When I went to a second opinion at MD Anderson, they gave me information that my oncologist hadn’t told me either, that it was also in my peritoneum and lymph nodes. The communication wasn’t quite there with the first one.
He recommended that I stop chemo. We talked about targeted therapy, and that’s what I did. And everything changed after that.
I would take six pills a day. Three in the morning, three at night. And then the biggest thing was I would get infusions every other week.
I was able to get surgery
Every past oncologist told me, “You know, surgery is not an option. Continue with chemo.” But I was able to have the surgery thanks to the targeted therapy.
I started with the new oncologist at the end of November 2024. And I had my first surgery at the end of January. Just two months later. He was able to remove the colon, lymph nodes, and the left side of the liver. And then we waited two months. And then in March 2025, I had my second surgery, which took care of the right side of my liver. It actually had more tumors in it.
But the amazing part is that in both surgeries, when they took out all of the cancer, it was between 95% and 100% dead already. These numbers are amazing. I see numbers that are between 10 and 30% and those are already great numbers. And then when I had the second surgery, 99 to 100% of the cancer was dead.
So the targeted therapy was working. And they just went in with the surgeries and got it out.
I was there for 4 or 5 days. You know, it was an intense surgery. They did a lot. And I have the scar to prove it. I got my warrior scar; I deserve it.
Luckily, I had friends with me. My husband kind of rotated because it was out of state. All my care has been out of state; it’s not just 15 minutes down the road to the hospital or something. To get to the cancer center, I would have had to drive for hours or fly. But it was great to have. I needed support from my husband. Being in the hospital, that’s not fun. A lot of people have a recovery time. I mean, I’m still recovering at six months out. Having all that done to your body is a lot. So just recovery time was a lot of couch and bed time, that’s for sure.
I was not in the mood to eat. They did a good job of getting me up. You know, day one, moving around. I didn’t really want to a couple of times, but they got me moving around, which I think was really best for me. This is good for me. Keep on going. But eating, getting food into my body, was difficult.
My kids made this big welcome home sign. Mostly my daughter did it, but my son helped. But yeah, they made this great sign. It was after my first surgery. I got to come home, and then they were just standing there with the welcome sign, and that was really sweet. I cried, of course.
The value of multiple opinions
I recommend getting a second, even a third opinion. You know, technically, I started with my small-town oncologist. I was sure I wasn’t going to stay here in a small town. Then I went to San Diego and got another opinion in Texas, and then went back to California, where I am now.
So, absolutely get second opinions. Get third opinions if you can. I also called a bunch of other places that I never got in with because they were so far out. So I was looking at other people calling, making other calls, because I just didn’t feel right.
I think that I would have been doing that intense chemo for months, and who knows where that would have led me. It would have knocked me down so much that I couldn’t recover and move on to the next thing. Or maybe it just would have been, yes, more chemo and months worth of that agony. And then maybe the doctor would finally have switched me to this other targeted therapy, and I could have ended up in the same place. I don’t know. But I do know that I would have wasted time.
I did call a cancer coach. And it was interesting. She gave me a lot of information. “Hey, do you want to travel to New York and get a third opinion?” And that helped me open my mind to the possibilities. Wow, I really don’t have to just do what this one doctor in a lab coat says, just because they’re the doctor. There are other options. And she was talking about all these things and possibly even getting treated in other countries. She opened my eyes to different trials and things out there that nobody was telling me about. That helped me be a little bit more courageous and open to the idea that I don’t have to just listen to this one person. “Yeah, you know, you’re doing chemo, and it seems like the tumors are shrinking.” That’s great. But you don’t have to just listen to one person.
How my diagnosis impacted my kids
That was a big question: how much should we tell them? I wanted to be open. My kids were nine and 11, and I wanted them to know what was going on. I wanted them to know why their mommy was on the couch all the time, why I didn’t feel good. And they needed to know that I needed their help.
The main thing was, yes, I missed out on a lot of time. We would try to do things around the couch, or maybe do a puzzle or watch movies. We’d try to do whatever activities we could. But it was harder missing their games and not being able to take them to school and having my husband do that instead. Just missing out on a lot.
But we did our best. And I made them into little runners. They would run and get mommy a blanket, a pillow, water, or food. They were great helpers, but I wanted to be as open and honest as the kids could understand, but not terrify them, because I was terrified that I was going to die. And so I didn’t. I said, “Mommy’s sick.” And yes, people do die from cancer, but I don’t think that’s going to be me. So they were going to think that mommy’s going to be okay, but I’m just not the same right now. And I’m going to need your help. And they stepped up.
So in a way, it’s kind of a little gift. It’s kind of good for them because they learned to be more empathetic and more sympathetic. So learning a little bit more responsibility, needing to help out more, carrying things because I couldn’t carry anything. They were carrying everything for me. So in a way, they’ve grown a little bit from this, too.
The hardest part of my diagnosis
The hardest part was the weight of getting the initial diagnosis. Stage 4 terminal cancer. What does that mean? Am I going to beat this or not? That was really low.
After going and seeing that second opinion, when they told me, “Oh, we would do the same thing,” and I hoped I’d walk away with a magic pill or something for me, but they didn’t have anything for me, and then learning that it was also in my lymph nodes, which in my mind meant that I was done because it can travel anywhere — that was a really low point. And that’s when I made goodbye videos to my kids, which was hard.
I’m glad I did, because I can look back at them and think, “Wow, I was on the verge of saying goodbye to my kids and my husband.” That was probably the lowest point — coming to terms with having to make these videos.
I had actually put on makeup and fixed up my hair so that it was a good video for them. I didn’t want them to think, “Mommy looks really sick and bad.” They were going to have those videos forever.
I told my husband, “You can remarry, but I know you’re not going to.” He responded, “I’m not getting married again. I’m glad I made it so wonderful this first round.”
So I made those videos, and I’m glad I did, because I have them, and I can look back and be like, “Wow, that was me in a really not a good place to come to that point, to say goodbye.”
How my identity has shifted after my diagnosis
My identity has changed immensely. Not only my lifestyle, but also starting with that. Like the things that I eat, I put in my body what I put on my body. I avoid processed food and eating out a lot. Cutting out alcohol, cutting down on sugars and meat.
But the biggest thing is that my outlook on life is completely different. When I was sitting there, you know, just wanting to go outside and just sit outside, and I couldn’t do that. So now, I treat every day like it’s so precious. I want to squeeze so much out of every day. I have to do this, I have to do that. What’s my to-do list? Got to go to work. Got to get the kids to school. Got to do. Gotta check off that list. Now it’s like, I get to take my kids to school. I get to go to work. I get to go to the grocery store. I get to watch a movie. I get to go outside and listen to birds and waste time.
And so my biggest realization is that you don’t know how long you’re going to be here. And people say that all the time, but it doesn’t sink in until you truly face death. And this could all be over very soon, was what was going through my mind. So when you have that, then you just really appreciate everything.
And now I’m in remission, I’m filling my calendar with all these places that I want to go, things I want to do, friends I haven’t seen. I am just filling it up with things that I really want to do. Versus, wow, why did I fill up my calendar with stuff I didn’t really want to do or waste time doing, when I could have been enjoying more time with my kids or my husband or just reading a book?
I’ve definitely gotten more in touch with myself and my emotions. My whole identity has really shifted to being grateful, taking care of my body, and helping others. Now, that’s what I want to do, pay it forward. And my outlook on life is so much better.
Reaching no evidence of disease
I had a clear first scan after my second surgery, and it showed nothing on there, which was amazing. It’s funny. I didn’t even let that enter my mind because I was just thinking, “We just want to see that the tumors are gone.” But in my mind, it didn’t add up to the possibility that I could be cancer-free. Like, I didn’t let myself get my hopes up.
I finally talked to my oncologist, and he said, “Yes, we don’t see anything, but we have to do these other bloodwork tests.” I remember I was at Sea World with my family, and I got the email, and thought, “Should I open it now? Because this could be good or bad. Okay, I think it’s going to be good. But either way, I want the information. I’m doing well, and I think it’s going to be good.”
I just looked at it and I saw the number zero, indicating no tumors. And that was the moment I thought, “Wow, I think I’m in remission.”
I had my appointment the following week, and then I was like, “Can I say I’m in remission?” And he said, “Yes.” So I knew it a little bit. And it was slow, it wasn’t like, boom, a moment you faint or like scream or something. It was definitely wonderful to hear those words out of his mouth and then to share them with everybody.
I immediately called my husband and a couple of close friends. I sent it to my girlfriend star squad, those girls who have been helping me through this and taking care of me. I let them know. And then I was like, “I’m going to put it on Instagram and tell the world, because this is great news.”
It’s still sinking in, but yeah. It’s amazing.
My support system
My husband, my kids, they’re the reason why I’m here. I fought so hard for them. I want to see my kids grow up. I want to experience all that. And it’s wonderful. I was in the mindset for a while that I’m not going to see them even drive or go to their first dance, or first kiss. And I believe that I will now.
I had my star squad, the smaller group, 12 women, in a group text. It would be like, “Okay, who’s going with Starr to this treatment?” “I’m going to drop off some food.” “Do you need any help with the kids?” Words of encouragement. And then I had two or three friends who were just there every single day. How? Constantly checking in on me. Showing up, even being there when I didn’t know I needed them.
Talking through things and just having that girlfriend connection that you need. So not only taking care of me physically and all the things that I need, but mentally, it was just to let emotions out.
What I want others to know
One of my books talks about radical remission, radical hope. This thing is amazing. It just gets into not only supplements and good food, but also all these other things that you can be doing. Nourish yourself as a whole, not just physically, but also emotionally, spiritually, and mentally. It’s your outlook. Oh my gosh, that could be half the battle right there.
I had stage four terminal cancer; I could have thought that I’m not going to make it. Not to say that I didn’t get in that mental space, of course, I did at some portions throughout this, but I’ve tried to stay as positive as possible. And I think that really, really helps.
I read in these books about people experiencing spontaneous remission. Reading about somebody who was literally put in hospice and they were expected to die in a week or two — but they don’t, and they’re still living many years later. And really, if they can do it, I can do it.
People want to hear that. People need to hear that. Just because you’re given this diagnosis doesn’t mean that you’re going to die. You can beat it. You can live a much longer life than the doctor said.
You’re your own statistic. You are your own person. You can really do a lot of things in your life, rather than just taking chemo and radiation or even just food supplements that you’re putting in your body. There’s more that you can do. And I want people to know that you can empower yourself. You can really change the odds. Those stats in my mind went from, “Oh, you have a 15% chance to live to 85 or 90, to: I expect to be here in five years.”
I really have the mindset and the changes that I made. I want people to know that it’s not a death sentence. People are getting cancer younger and younger. Even though you’re young and you think you’re healthy. And that’s what I thought I was. I drank the green drinks. I went, I exercised. I kept my body weight down. And I thought I was healthy, and wow.
Cancer made me really look at my life and realize that I had a lot of imbalances. And I thought, “Maybe I should address those. This is cancer; it is my wake-up call. Let’s not focus on the fact that I have cancer. Why did I get cancer in the first place? What are the things that I can change in my life? To not only beat the cancer. My goal now is to stay in remission, to not let it come back.” And so I need to really nourish my body in multiple ways.
At first, it was uncomfortable. I am a survivor, I am a warrior, and I am a thriver. And I’m proud of that because I’ve been through a lot. What’s scary about it is that at my next scan in three months, I could have cancer back. You know, it can come back at any point. I really do believe that I’m going to be okay. But there is that chance that it’s going to come back and that I will need to continue this battle. But survivorship to me is just a wonderful feeling. And I hope that other people take some hope from this, that this can be you, too. You can do it. And you can be a survivor, a thriver, and a warrior too.
And in the meantime, whether you have cancer or not, just live your life.
Cancer is Not Just an Older Person’s Disease: Kalei’s Stage 4 Rectal Cancer Story
Kalei’s stage 4 rectal cancer story is an eye-opener for anyone who thinks that serious illness only happens later in life. At 28, a healthy young mom of two, she first noticed subtle but ominous changes in her body, such as strange bowel habits and the presence of tissue-like substances and, eventually, blood in her stool. Her instincts told her something wasn’t right. Even after an initial stage 2 rectal cancer diagnosis in 2024, she trusted her gut, stayed vocal, and kept pushing for answers.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
In early 2025, scans revealed a small lung nodule. Despite reassurances from her first oncologist, Kalei continued to ask to have this nodule checked. Her self-advocacy ultimately confirmed that the cancer had metastasized to her lungs and led to her stage 4 rectal cancer diagnosis.
Throughout her experience, Kalei reminds us why paying attention to our bodies matters. She encourages younger people to take unusual symptoms seriously and seek proper care without hesitation. Her story highlights her personal transitions, from disbelief to determination and from fear to peace. Rather than getting lost in worst-case thoughts, she leans into faith, family, and community support. She shows that even with stage 4 rectal cancer, it’s possible to live with hope, clarity, and peace.
Kalei’s candid approach to self-advocacy is heartening and empowering. She refused to accept unhelpful answers from medical professionals and continued to press for the right ones. She emphasizes that seeking second or third opinions is not only acceptable but necessary. Her message is both urgent and clear: your life and health are worth the effort.
Kalei now focuses on making memories, nurturing positivity, and choosing doctors who listen. She believes that living fully and purposefully through planning trips, cherishing everyday routines, and capturing family photos offers strength through uncertainty. Her story is a gentle yet powerful call to stay in tune with your body, speak up for yourself, and walk through even a stage 4 diagnosis with peace.
Watch Kalei’s video and read the transcript of her interview below. You’ll learn more about:
How she trusted her gut when doctors said it wasn’t serious
The subtle signs that led to a diagnosis that changed everything
How a young mom’s fight for answers inspires courage
Learning to live fully, even with stage 4 rectal cancer
How Kalei’s story proves that self-advocacy saves lives
Name: Kalei M.
Diagnosis:
Rectal Cancer
Staging:
Initially – Stage 2 Grade 3
Later – Stage 4
Symptoms:
Presence of mucus, tissue-like substance, and blood in stool
Stomach cramping
Treatment:
Radiation therapy
Chemotherapy
Surgeries: two lung resections
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I was diagnosed in April 2024 with stage 2 grade 3 rectal cancer, and then in August 2025 with stage 4 rectal cancer that metastasized to my lungs.
My symptoms started in early 2024
Before that, I was completely healthy. I never had any health issues. I had two healthy pregnancies and deliveries.
In February or March, I started experiencing weird things with my bowel habits. I was starting to go more frequently than I ever had. I usually go every few days, but then I started to go more frequently. I was like, “Oh, maybe I’m getting more fiber in my diet, eating healthier, drinking more water.” But when I would have a bowel movement, some weird tissue-like stuff would come out too. I’d never seen anything like it. It was creepy, a little alien-like. I was taking pictures, documenting, showing my husband. I was like, “Let’s just keep track of this. I’m not really sure what it is.”
After about a week or two had gone by, I was starting to have blood in my stool as well as the tissue-like stuff. I think I had blood for a few days. And at that point, my husband and I decided I needed a general physician appointment.
I made an appointment and told her all my symptoms, what I was experiencing. She looked at my history and she told me, “I’ll check and see if it’s like an internal hemorrhoid. Or, you know, after you have kids, stuff kind of tears down there.” She checked for that and said, “There’s nothing in there. I’m going to refer you for a sigmoidoscopy.”
I was waiting for that. I think it was scheduled for two months out from the appointment I had with her. She also ran blood work on me. She said, “You’re not anemic. Nothing is alarming with your blood work. Everything looks good.” I left and just waited it out.
A couple of weeks went by, and I was still experiencing the bleeding and this tissue-like stuff. I started having blood clots coming out, too. One of the ones I passed at the beginning was very big. I started having intense stomach cramping, too. I had my husband take me to the ER because if I’m bleeding this much and having clots, I can’t really wait for my appointment for this procedure.
So we went in and I told the doctor in the ER everything that had been going on, and showed him photos of my blood clots. But all he did was run bloodwork. He didn’t order scans or anything like that. And he pretty much told me the same thing that my doctor had told me a couple of weeks ago. “Your blood work looks fine. You’re not anemic. There’s nothing life-threatening. You just have to wait for that procedure.”
While waiting to get answers, I took matters into my own hands
After that ER visit, I got frustrated because my husband and I knew that what I was experiencing was serious, but I just kept getting the same answers. So I called my mom and my aunt who has experienced cancer a few times. They said, “You need to call a GI doctor, see if they have a cancellation list to get you on.” I literally got on the phone with them when I walked out of the ER, and the girl I spoke with said, “I am so happy that you called because that is not normal. And that absolutely needs to be checked out right away. I want you to go forward with a full colonoscopy instead of a sigmoid. I’ll book it, and I can bring you in next week.”
I remember my husband and I thought I had ulcerative colitis or Crohn’s disease or some autoimmune disease. And we were really hopeful. He had to work the day of my appointment. I had my mom come with me just because we weren’t super worried that it was going to be anything crazy. We were just excited to get an answer. And after I came out of the procedure, I was lying in the recovery area, and the doctor came over and he said, “I want to talk to both of you. I found a mass that is growing through the rectal wall down at the end of your colon. With the way it’s growing, I’m very concerned that it might be cancer.” That was really shocking.
We went home, and my husband and I processed it. What would we do if it were cancer? I remember this is just so significant to my personal story.
The day after my colonoscopy, I was driving somewhere by myself, and I was listening to my worship music, and a little sermon excerpt had come on in between the songs that I had never heard before. It talked about sacrifice and being joyful in your suffering. It just really resonated with me. I just prayed, because when you hear “cancer,” you’re going to be in the worst-case scenario, you’re like, “What in the world is happening?” Especially for someone so young. You don’t think that could ever happen to you.
Maybe 24 hours after the colonoscopy, the doctor called and he said, “I’m so sorry, it’s confirmed that it is cancer.” So we experienced all the emotions. You can’t really predict how you would feel.
My care team had a plan, but it was still a shock
My first appointment after I got the diagnosis was with a colorectal surgeon. I had done the PET scans, the MRI, all that kind of stuff. And he brought us in and told us that he could actually do a sigmoidoscopy in the office because of the location of my tumor. And so he checked it out and said, “We’re going to take it to the tumor board, and we’re going to consult different doctors.”
He called me a couple of days later and said, “We’ve come to the decision. So you have a stage two grade three tumor. We want to start you on radiation therapy with chemo pills. And then after that, you’ll get a tiny break, and then we’re going to start you on a few months of IV chemo.
Hearing that treatment plan was a shock. We thought I was just going to get surgery and that would be it. But they said that so many studies have shown that when they treat a localized cancer first, a lot of times, they’re able to shrink it down to a tiny size or dissolve it altogether.
In my case, they were able to dissolve it. So I didn’t have surgery.
The treatment worked, and I showed no evidence of disease until a suspicious spot popped up…
It was really incredible. We were just so happy. And then they set me on a wait-and-watch plan. Every three months for that first year after I ended treatment, they were going to do a set of scans, bloodwork, and exams. I had my first round of that, I believe, in March this year.
I just went in for my regular scans and everything, and my chest CT showed that a 7mm nodule had popped up. I had never had that on any of my other scans. I immediately asked my oncologist, “What’s the deal with this thing? This is brand new. We’ve never seen this before.” And she told me it’s nothing to be worried about. Everybody has nodules on their lungs, all over their body. It’s a common thing.
My blood levels had gone down into the normal range at the end of 2024. But when I had this checkup scan in all my bloodwork, they had elevated a little bit. And then this nodule had popped up. I asked my doctor if the combination of both of those things was a concern. She said, “No, it’s still in the normal range. There’s nothing to be concerned about.”
I asked her if I could get another scan of my chest in a month, because I didn’t feel good about waiting till the next three-month cycle. After all, this thing could double in size. She told me, “No, we’re going to wait, because I can’t order that. The hospital won’t let me. They won’t sign off on monthly scans.” At that point, I was feeling really frustrated because I knew something was wrong. I’ve been through all this stuff. I can read between the lines with blood results and scan results and so on. I called my hospital and requested a second opinion. For some reason, they circled me back around her. She ended up getting me a scan four weeks out. I ran my blood test results again. When that scan came up, they had increased again, and then the nodule had grown another two millimeters.
If I hadn’t requested this, it would have just kept going and going and going. I didn’t understand why she wouldn’t want to be more proactive about something proactive about it.
After advocating for myself, I was referred to a pulmonologist, a doctor who specializes in the lungs and entire respiratory system
She’s wonderful. She let me ask a million questions. I love to ask questions, and so does my husband. She was fantastic.
She said, “I’m definitely concerned about cancer.” My CT results showed that the nodule had grown again, to 11mm. And that was in like three weeks, I think. So it was just growing, and so we were prepared that it was cancer.
She said, “Unfortunately, it is cancer. It has the same cell structure as your colon cancer, so it’s GI in origin.
I said, “Is this a stage 4 diagnosis?” And she said, “Unfortunately, it is.” That rocked my world.
My husband and I processed the devastating news with our family and friends
I remember the day I got the call for the diagnosis. It was super emotional. My husband and I couldn’t keep it together. Our family was coming over, our friends were calling, and it was just really emotional.
It felt super, super heavy. Stage 4 just sounds like, “Oh my gosh, you’re gonna die.” That’s what I feel like. We’ve all been made to think that that’s what happens when you have stage 4 cancer.
I just remember reassuring everybody. I would say I’m more of the rock. I can calm people. I calm everybody down. Everybody can get crazy with their emotions. But I just kept reminding everybody that it’s only in one spot that we know of. I just had a PET scan, and it didn’t show any evidence of disease in any other organs. So, we needed to be hopeful and to keep praying and asking the Lord for peace and for comfort. We can’t control what’s going on.
At this point, I knew it was time to tell my two daughters
I think it was the next week after the diagnosis that my husband and I decided to tell our daughters what was going on. They were really young at the time, only four and two. But my four-year-old is so, so smart. And I didn’t want her to keep hearing everybody talking about all this stuff around her.
So we sat them down and said, “Mommy’s sickness is back and she has to get more medicine, maybe some surgeries too. We’re going to get the cancer out of her body again. But mommy’s going to be tired. Mommy’s going to be sick.” And I remember my four-year-old. She was really sad about that.
I remember last year when I was on chemo, I brought home a pump for two days for every round of chemo, and I wasn’t allowed to hold them, and they couldn’t be on me. And that’s a really heavy burden for young kids, you know? And it was so tough to see her so emotional because she’s probably thinking that what happened last year was going to happen again. And so we just tried to reassure her.
Those were all the emotions that we went through. It was hard, but we got through it.
I had also gotten a new oncologist, and her team knew how they wanted to handle the cancer spreading
So the oncology team, the thoracic surgeons, and the pulmonologist came together. And they concluded that they would like to move forward with surgery first, since I only had that one nodule and it was in an area where they could resect a wedge out of my lung.
But before that call, I had another chest scan. And it had shown that something else had popped up on my right lung. So I now had two nodules, one on each lung. And I was like, “Now it’s spreading. It’s jumping around like crazy.”
The surgeon told us, “This is a very rare case. We all believe that doing lung resections would be the best case. And then we can go from there.” My husband and I looked at each other, and we said, “That sounds good, let’s do that.”
Even after everything I’ve been through, I’ve been able to find peace in my diagnosis
When people ask me how I’m doing, what’s going on, or how I’m feeling, I say, “I’m actually doing really great.” Though people might think that’s not even possible, when I was going through chemo, I was continuing with regular life activities. And I had so much peace about everything. I could talk openly to anybody about my situation and my diagnosis. I felt like my faith really transformed my heart last year and taught me a lot, and gave me the strength that you can pull only from within.
After I had two lung surgeries, my husband and I are now focusing on moving forward with everyday life
We are going through our lives like it’s normal, like I don’t really have anything going on. It’s not that we’re not trying to acknowledge it or anything like that, but it helps us when we can move forward with what we need to do.
We have school drop-off Monday through Friday, and school pickup. We have activities, we have birthday parties. We have plans with friends. We’re going out of town. I think that keeping busy helps us cope with this. We went out of town when I got my first stage 4 diagnosis, and that was incredible. Just getting out of the space you live in really helps to get your mind off things.
We’re living a normal life because in the grand scheme of things, nobody is promised tomorrow. I think a lot of people forget the gravity of that. We take it for granted. And I think that when you are diagnosed with a sickness, obviously, your world comes crashing down, and you start having realizations that healthy people probably wouldn’t have.
When I feel good and when I’m not recovering or I’m not going through treatment or anything like that — that’s time for us to thrive and make memories and plan vacations and do all that kind of stuff.
I want people to know: Always advocate for yourself and stay strong
I’ve seen and heard so many stories of people who just listen to doctors because they don’t really know anything else. I always encourage people to listen to their bodies and to be their own advocates.
I never understood any of that before I went through this, but it’s so true. You may experience negative interactions with certain doctors or not get answers from others. Or you may have fantastic experiences where the doctors will advocate for you.
So I just really want to encourage everybody to trust your gut and just push, push, push. The doctors’ and nurses’ job is to serve us and help us. It’s not the other way around. We shouldn’t feel bad about getting a second opinion from a different doctor, and thinking that it would be hurting the first doctor’s feelings. I think it’s really important to find doctors who listen to you and advocate for you.
If you are walking through a season of sickness or received a diagnosis that you weren’t expecting, I know that it is 110% possible to get through difficult seasons of your life where you’re suffering and you’re in pain. If you’re in a state of unknown and are questioning everything, it’s possible to walk through all of that with peace. I lean so much into my faith, and that’s truly the only thing that’s kept me going and kept me strong.
I don’t think that as humans, we can really deal with all these crazy emotions that flash in front of us when we are faced with a diagnosis. That’s why we have to pull that strength and that comfort and that peace from somewhere else. And it’s really beautiful that such a terrible sickness can bring so many good things.
So just be positive. Don’t spiral, don’t look on the internet.
From Bladder Cancer Caregiver to Advocate: David Garrigues Ronda’s Story of Love and Support
David, a devoted cancer caregiver and husband to Laurent Gemenick, shares his story about navigating bladder cancer with his spouse. From the first hint of blood in Laurent’s urine, their lives shifted dramatically. David stepped into the role of organizer, motivator, and emotional anchor, ensuring that Laurent needed to focus only on healing. Right away, they learned that getting multiple medical opinions was crucial. The first doctor recommended removing Laurent’s bladder entirely, but after consulting other specialists, they felt empowered to choose another treatment path.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez & Jeff Forslund
Throughout this experience, David emphasizes the importance of support. He shielded Laurent from overwhelming online information, took charge of logistics, and found guidance from the Bladder Cancer Association of France. Friends and family cooked meals, offered comfort, and made the hard days lighter. Together, David and Laurent created CANVES, an inclusive bladder cancer support group in Spain, where patients, doctors, and researchers collaborate to provide clear, empathetic guidance. Their mission is simple but powerful: to ensure that bladder cancer patients feel seen, are supported, and are never alone.
David’s advocacy reflects his deep compassion and determination. By speaking openly about symptoms, decisions, and emotional well-being, he hopes to encourage others to seek help early, ask questions, and lean on their communities. His message: no one should navigate cancer in isolation, and every cancer caregiver can play a key role in helping transform fear into confidence.
Watch David’s video and read through his story to learn:
How he and Laurent turned fear into empowerment during bladder cancer care
Why seeking multiple opinions gave them a better option and helped give real peace of mind
How warm family dinners made all the difference on days filled with tests
Why they started CANVES and how it is helping bladder cancer patients feel seen and understood
The ways a simple phone call can transform a patient’s sense of hope and connection
Partner’s Name:
Laurent Gemenick
Diagnosis:
Bladder Cancer
Symptom:
Presence of blood in urine
Treatment:
Surgery: transurethral resection of bladder tumor (TURBT)
Thank you to Johnson & Johnson 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 for treatment decisions.
Talk to family, talk to friends. Ask for help. Don’t be alone. And above all, don’t miss any doctor’s appointments.
David Garrigues Ronda – Bladder cancer care partner
About Me
Hi, I’m David. I’m Laurent Gemenick’s husband and his cancer caregiver.
I went to live in Brussels to look for a job, and there I found a place to stay. Laurent and I got to know each other there over the course of a year. We lived together, we spent six years living together there. In the end, we got married here in Spain. We’ve been building our life together for 13 years.
Laurent smiles a lot, like me. He is always there for family and friends. I can count on him for whatever I need.
How Laurent Found Out He Had Bladder Cancer
In October 2022, Laurent began to experience unusual symptoms while urinating. The last drop of urine that came out was a little pink. Since then, we had been checking every day for a few days and seeing a doctor.
Laurent was eventually diagnosed with bladder cancer. I was with him the whole time. I was in charge of arranging appointments and processing all the paperwork with the insurance company. I took care of everything. I tried to get him to worry about as little as possible. He already had enough on his mind.
Everything Changed When We Heard the Word “Cancer”
It was very difficult, to be honest. Even the doctor had trouble saying the word “cancer.”
They talked about the tumor and such. But we had to take the word “cancer” out of the conversation.
After leaving the office, we looked at each other, talked before going to the car, and made up our minds about what we had heard. It was tough.
We had not heard about it before. We didn’t know we could have bladder cancer, and neither did our family and friends.
We Found Treatment Decision-Making Complicated and Challenging
It was, shall we say, a bit unusual. Laurent’s first doctor offered him a radical cystectomy. He said that there was no other option. They were going to operate and remove everything and create a neobladder. We didn’t like this option. It scared us.
We asked for three options. The doctor gave Laurent three propositions. The first was the removal of the bladder and the creation of a new one. The second involved chemotherapy and radiotherapy. The third and last was to conduct an operation and examinations every three months for the first two years to collect samples and analyze what [the tumor] was doing.
The doctor added that if Laurent was too scared, then the second option involving chemotherapy and radiotherapy would be the one to choose. But the doctor told him that he was young and strong and that we could try it without any problem. It was his decision. And so we decided to remain vigilant and do these very thorough reviews.
Of course, it was not only surgery that they would do every three months, it was also a CAT scan, an internal x-ray, urinalysis, blood tests, and so on.
It Was Critical to Get More Than One Opinion
We went to see five more doctors in total. It was all very scary. And the operation that was initially proposed to him was very risky. Not only would Laurent’s bladder be removed, but many more things would be affected inside his body. Also, my insurer told me, “You can get a second opinion, take advantage of it.”
We thought it was very interesting. They placed all the solutions in our hands. Of the five professionals we spoke with, four went one way and only the first one went the other way. That gave us much more confidence to go the way we chose.
We thought it was very interesting. They placed all the solutions in our hands.
David Garrigues Ronda – Bladder cancer care partner
To Build Our Confidence, We Searched for Support
I forbade Laurent from looking for information online. I told him, “I will be your filter.” I searched and checked, but mostly found a lot of information for professionals that used very professional terms. In the end, the Bladder Cancer Association of France is the one that gave us the support and information we were looking for.
Our family and friends also supported us. Everyone was with us. For instance, we were coming from the city to do a test, and my mother was already ready with dinner. That helped us a lot. And then also, after a year had passed and we were more or less better, I told him we were going to hire a fitness coach who would help us, including with fitness and nutrition.
We Started Our Own Bladder Cancer Group
We formed the Alliance for Bladder Cancer (CANVES) in Spain. It isn’t just for patients. We have a team of doctors, researchers, oncologists, and urologists with us. They are helping us now, for example, to prepare patient-centered material that doesn’t use medical jargon. But aside from preparing and maintaining these documents, we also organize an event once a year for patients. In the last one we did in Madrid, the professionals made very nice presentations that the patients understood. That was what we wanted.
What we took away from our experience is that we didn’t want another patient to go through the uncertainty we went through.
CANVES is Our Passion Project as a Patient and a Bladder Cancer Caregiver Advocate
This year, like over these last few years, we are dedicating all our vacations to CANVES. We travel to fora, conferences, and so on.
What surprised us the most was the first patient who asked us to call him to talk. We spent almost an hour or an hour and a half talking to him. He thanked us so much for that simple but meaningful gesture. It was just a call, but during that call, we were able to share a lot of information and advice.
Part of Our Mission is to Break the Stigma Around Bladder Cancer
There is a critical lack of awareness of bladder cancer. People should be aware of its symptoms and not just think they will vanish. There is no need to control them. And they should go to the doctor.
There are many people who are afraid of the doctor. Men are especially afraid to see the doctor. Women do go to their gynecologist at a younger age, so they are more accustomed to this. But men are not. Well, I think that may still be a bit of a taboo subject.
What we took away from our experience is that we didn’t want another patient to go through the uncertainty we went through.
David Garrigues Ronda – Bladder cancer care partner
I Want People to Know: You Are Not Alone
More than anything else, I would tell someone who is already a bladder cancer patient what I have told many patients before.
Talk to family, talk to friends. Ask for help. Don’t be alone. And above all, don’t miss any doctor’s appointments.
Special thanks again to Johnson & Johnson for supporting our patient education program. The Patient Story retains full editorial control over all content.
David’s partner, Laurent.
Laurent’s Story
Laurent’s story, with David by his side every step of the way, is a reminder that living with bladder cancer can be filled with hope and learning to advocate for yourself can lead to opportunities to help others. Watch Laurent’s video.
Bladder cancer patients Ebony & LaSonya talk about their cancer journey, including their first symptoms, how they processed their diagnosis, treatment options, and how they found support. Dr. Samuel Washington, a urologic surgeon, also gives an overview of bladder cancer and its treatments.
How Terry Rediscovered Himself After Rare Sarcoma (Right Maxillary Fibrosarcoma)
At 20, Terry’s life took an unwelcome, unexpected turn when he was diagnosed with fibrosarcoma, a rare sarcoma or soft-tissue cancerous tumor. He was a senior at UC Berkeley, serving as president of his fraternity and juggling academics, a part-time job, and a relationship. One day, friends noticed a small bump on the right side of his nose. This seemingly unimportant detail led Terry down a path of medical consultations, during which doctors thought that a persistent lump behind his nostril was nothing more than a pimple.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Eventually, after weeks of uncertainty and multiple consultations, Terry was diagnosed with fibrosarcoma. (Editor’s Note: Fibrosarcoma is a very rare cancer, representing less than half of 1% of all cancers.) Terry dealt with the shock by leaning on his faith and focusing on the present rather than overwhelming himself by worrying about the future.
Surgery was Terry’s first line of treatment. Unfortunately, the rare sarcoma returned six months later, this time manifesting as tingling sensations and a hard mass beneath his right nostril. Terry’s medical team acted swiftly, scheduling scans and more surgeries, some involving the potential loss of his nose and eye. Terry underwent around 30 reconstructive procedures over six years, along with iridium seed implants that deliver focused and targeted amounts of radiation.
Terry focused on his mental health as a pivotal part of his healing. The physical changes affected his self-esteem, leading him to withdraw from social activities. However, he worked to regain self-confidence by setting small, achievable goals. He worked on becoming physically fit, which improved his mental well-being. He also found comfort in sharing his vulnerabilities with others through group therapy. He also found that writing a book about his experiences was another good therapeutic step. Doing so allowed him to transform his personal reflections into a resource that could help others.
Today, Terry speaks to audiences across the US about his experiences. His rare sarcoma diagnosis may have altered his appearance, but it also reshaped his perspective by helping him learn the value of authenticity and self-acceptance. He views his physical scars as symbols of healing and is grateful for the life lessons they represent.
Watch Terry’s video, and scroll down to read through his transcript, for more about:
How a simple comment from a friend led to his rare sarcoma diagnosis
Why Terry decided to stop having surgeries, and the important things he learned that helped him make this decision
From UC Berkeley to the cancer ward: how his life shifted unexpectedly
What Terry discovered about self-confidence after his rare sarcoma treatment
How setting small goals helped him reclaim his identity
Name: Terry H.
Age at Diagnosis:
20
Diagnosis:
Sarcoma (Right Maxillary Fibrosarcoma)
Symptom:
Visible bump on right nostril that began to flare out
Treatments:
Surgeries: removal of tumor, reconstruction
Radiation therapy: brachytherapy
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 am currently an author and speaker. I speak to audiences all over the US, and that’s really my passion. My purpose in life stemmed from a cancer experience.
I had a couple of encounters with friends who said, “Hey, I noticed there’s something on the right side of your nose. Is everything all right?”
Which was odd, because I didn’t even notice it looking in the mirror, but I guess I wasn’t that focused on looking at myself at that stage of my life.
There really wasn’t any pain or discoloration or any of that, so it just didn’t seem like it could be anything nefarious at that point.
When I first noticed something was wrong
I was living a good life. I call it my life on easy street. I was the president of my fraternity. I was a senior at UC Berkeley. I had a girlfriend I was working three days a week at a law firm in San Francisco. So somehow I was managing to do all of this stuff and never felt stressed out.
I first noticed my right nostril flaring out as a result of this lump that was forming behind it. I went to an ENT doc who basically thought it was a pimple. Being 20 years old at the time, I was pretty certain it wasn’t, but I sort of had to play the game with the doctor because I was 20. I didn’t know really what the protocol would be in terms of questioning your doctor. That’s what led me to the doctor. It became a long journey of actually concluding what I was diagnosed with, though.
I went from an ENT who finally said, “You know, let’s take a look in three weeks and see if it’s still there.” Well, in three weeks, it was still there, so he scared me into having a biopsy. Long story short, it took five weeks for me to get a diagnosis, so they couldn’t actually figure out what it was. So I ended up at Walter Reed Hospital. Before they actually did the pathology and accurately defined it as a fibrosarcoma. At that point, I was then referred to a head and neck surgeon and not an otolaryngologist, as the official term for that at UC San Francisco. It was awesome that I was referred to him because he was a spectacular guy with whom I really connected on so many levels, and I really trusted him. That’s when the journey for the treatment of my cancer began. I finally got that diagnosis after literally about eight weeks of trying to figure out what was going on.
The moment everything changed
When they originally said I had cancer. That’s actually an interesting story because the doctor, the ENT, could not tell me the truth. He was really struggling to tell me what was going on, and he had a fellow who was studying under him in the room, and the fellow actually interjected and said, “Terry, what the doctor is trying to tell you is that you have a malignancy. You have cancer.”
Number one, that was a shocking way to have it revealed. Number two, it never occurred to me that that could be possible. However, they were really quick to sort of move the conversation forward and say, “Hey, but this is cancerous. It is rare. However, we caught this in the early stages. We’re pretty sure we’re going to be able to take care of this. It shouldn’t be anything too serious.” So again, going back to the point of being 20 years old at diagnosis, I think I felt that I was somewhat invincible anyway. Right? That, oh, okay, they’re telling me I’m going to be fine. I believe that I’m not sick. I don’t feel bad. Everything seems fine. You know. So I think initially I was maybe a little blindsided, but honestly, not that freaked out by it. Certainly, my faith played a big role, so I don’t want to underestimate or understate the importance of that. And I did pray, and I tried to find courage and strength because I knew that I was going to need it. I just didn’t know when. And so I prayed for the courage and the strength to get me through this. However, at the time, I really wasn’t that concerned about what was going on because the prognosis didn’t seem that severe until much later.
Sarcoma cancer is incredibly rare. They represent less than one-half of 1% of all cancers. The problem is they don’t know a lot about them. There aren’t a lot at this time, especially. There weren’t a lot of specialists. There weren’t sarcoma centers back in 1985 like there are now. Mine was fibrosarcoma, an even more rare form of a sarcoma cancer. I wasn’t someone who wanted to go and learn about what my odds are, what my odds were. I didn’t really want to know what was ahead of me. I sort of felt like I’m just going to tackle this one day at a time, and I don’t want to get ahead of myself. That’s sort of the way I was fortunate to live my life because I didn’t allow myself to get into this anxiety cycle of worrying too much. And you could also argue that maybe I was somewhat ignorant, that I was not someone who was seeking the answers that I would today at my age. But again, I think it goes back to the feeling that I had the world by the tail. I had this really rare form of cancer that they didn’t know much about, but they also told me that it wasn’t something that was going to be a serious situation. So I sort of moved about my life.
My cancer came back six months after surgery
Initially, they said we’re just going to treat this with surgery and surgery only. I believe that now, keep in mind, this is pre-internet. There wasn’t information as readily available as there is now, but I sort of accepted that. Okay, that’s what they’re telling me; they’re the experts. This is UC San Francisco. This is a great institution. I trust them. So that’s what was told to me. That’s what I took. I moved on with my life. And that recurrence happened six months later, pretty quickly.
What started to transpire was that I started to feel these tingling sensations in my cheek, my right cheek. And it felt like ants were crawling through my skin. It’s hard to describe. But that’s the best way I can describe it. And when I started to feel that, I started poking around, and I noticed that I felt this hard mass on my upper lip here. Below my right nostril. That’s where I felt it initially. I knew I needed to go back to the doctor. That was the beginning of figuring out that there was a recurrence going on. And so it was an acceleration and that’s really when I began to realize, wow, this is a serious situation because it was like, “We need a CAT scan today, I’m going to schedule you for surgery.”And I was like, “What do you mean you’re scheduling me for surgery? What’s going on? You know, we don’t even have the CT scan results.” But he knew what was going on, and he was doing these backup plans just so he had the information. Right? But he knew that the tumor had recurred. And then I was scheduled for the tumor board, which is a whole other experience that was eye-opening in ways that I never would have anticipated. So that’s what led to my doctor finally telling me, after the tumor board, what was ahead of me and what this next procedure would look like.
My parents were with me. One of my brothers was with me. And we sat in a waiting room for hours. And kept waiting and waiting and waiting. And there was no information coming back to us. We had no idea why we were waiting so long. When my doctor reappeared, he came in and he said, “You know, we’ve had our discussion. And, you know, I’m going to be honest with you. We spent most of the time at the tumor board talking about your case. Your case is very complicated. It’s complex,” blah, blah, blah, blah. And I sort of knew this going in, because I was examined by every single one of these 15 doctors. They literally came in and examined me and felt me and looked at me and gave me weird glances. I sort of had this bad feeling based on the way they interacted with me. But he came in and he said, “You know, Terry, this is now a very serious situation. We’re probably going to have to remove part of your nose. We might have to remove your right eye. We’re probably going to do a whole bunch of stuff, and I don’t know exactly what we’re going to have to do until we get in there. And so, again, 21 years old, thinking about losing half my nose. But I’ll tell you the most important part of what he told me; it was losing my eye. That freaked me out more than anything else. And that’s when I really started to get emotional. Right. And so then, you know, I had my own emotional experience following that meeting, but yeah, that was a whole different world now that I was waking up to.
The day of surgery
I went in for the procedure again, not really knowing what was going to happen because they didn’t really know. I just knew it was going to be serious. So I had the procedure, and the one thing I’ll never forget is waking up in the recovery room and not being able to open my eyes and starting to panic, thinking, “Oh my God, they’ve removed my eye.” And so I started asking for help. My procedure went much longer, so I was now into the evening hours. So I think I was the only patient left in the recovery room. So it was dark and quiet, and so finally a recovery room nurse came over and she said, “What can I do to help you feel better?” And I said, “What’s going on with my eye?” She started to rub it with some kind of cotton, and I could start to see. So then I realized, “Oh, my God, I have my eye.” That relieves some of that stress. But then I was carted to my room, and the reality of the situation didn’t really occur to me until the next day because I was so out of it that night.
I think we’re all familiar with the Elephant Man. That’s when I looked in the mirror. I thought, oh, my God, I’m the Elephant Man. I had this delta pectoral flap, they call it, from my chest attached to my face. So I had all this tissue looking like a huge sausage attached to my face. And the idea there was that they had to get a full-thickness skin graft to create an environment where they could actually transplant tissue to my face. So that was over two weeks that that was going to sit there on my face. So they told me that I would be there for at least two weeks. I wasn’t leaving the hospital for that period of time. And looking at my face, you know, I could tell my nose was all messed up. Lots of blood, lots of stitches. But the interesting thing is that my eyes looked symmetrical at that point. I noticed that they look symmetrical. My mouth still looks symmetrical. So there were things that would happen later that would cause more of the facial difference, disfigurement, whatever terms we want to use, that transpired later.
So initially, yeah, it was shocking. It looked horrible. But in hindsight, looking back, I’m like, God, you know, I didn’t look nearly as bad as I would later. And I think maybe God gave me what I could handle at that time. But again, I will say that my doctor, whom I still see to this day as a friend, is in his late 70s now. He came in immediately and said, “Terry, you know, this was serious. We’re checking the pathology. I don’t know if we’ve caught everything, but I’m telling you, we’re going to get you back to who you were.” And to me, that was critical because he gave me hope regardless of whatever the outcome was.
I underwent 30 reconstruction surgeries in six years
After that major procedure, I had to have two more procedures to remove additional malignancy that was still there. And I’ll be honest, that’s when you start to freak out even more because you start to think, man, maybe they’re never going to catch this. So those thoughts started to enter my mind. But, you know, it just became more about the aftermath of the cancer. It was the skin grafts all over my legs, and taking the plastic wrap off my skin graft. Somebody told me, “Oh, go ahead and remove it.” Well, if you’ve ever had one, you don’t want to do that. So, lots of pain from that. Never too much pain in my face. That’s what’s really interesting, right? More pain from the donor sites, from my shoulder, from my legs, from all these skin graft locations. But yeah, once I got through the cancer surgeries and was told, “Yeah, we’ve got clear margins,” then the next step was going to be radiation therapy. So six weeks of radiation, followed by 48 hours of what they call iridium seed implants that they put inside of your denture, where they cordoned me off in a room at the cancer ward, you see San Francisco with literally yellow warning tape across my door because I was radioactive for two days.
So that was kind of the final step in the treatment. And then it became reconstruction after that. And that went on for 5 or 6 years.
I decided I was done with surgery
It took a long time for me to develop the courage to even want to share my story with anybody. But a series of events transpired, and it led me to group therapy at the cancer support community. And that just opened up all these doors for me suddenly, because I did find the courage to share my vulnerabilities. And in doing that, it becomes this cathartic experience. And people said, “Oh, you know, your story is amazing. You really should write a book about it.” I’m like, yeah, right. You know? But I ended up doing that more for myself than for anybody else. Right? That catharsis that we go through when we write or journal. So that’s what I did. But when I finished the book, I got to this point in the book, and I’m like, “This doesn’t have a positive ending yet. I don’t feel that good about myself.” So it took a lot of work. It took a lot of facing challenges, taking control of my life, and making sure I had the right positive mindset before I started to feel comfortable with who I was. Once I became comfortable with who I was and decided I’m not having surgery anymore, I don’t care about trying to fix my nose, a slight tweak, or get my eye fixed. I had been doing six years of reconstruction. I’m done. I wanted to move on with my life, and that’s when I wrote the book. Well, that’s when I began to realize the power of being able to inspire people and help them in their own journeys and their own challenges. I would say I was well into my 30s, probably mid-30s, before I turned that pain into purpose and began to share the story and start to speak and try to help other people. So that’s a 15-year journey before I felt like I could turn that pain into purpose.
How I managed my mental health through my diagnosis
At that age, appearance matters a lot. And so I withdrew quite a bit at the age of 21. I withdrew from my friends. I withdrew from activities that I was used to participating in. And I knew that was unhealthy, right? I knew it wasn’t good for my soul. It wasn’t good for me. But it was really hard. So, yeah, I struggled a lot, and really didn’t feel good about myself in any way. But what I was fortunate to figure out was that I was always goal-oriented and very focused. I set goals and I achieved them. I don’t set a lot of them. I try to focus on one thing at a time. So singular focus on a single goal. To me, it makes life achievable. If you have too many priorities, you don’t have any, right? So one goal at a time. And when I reached through and got through that goal, I started to feel more confident because you believe in yourself when you achieve something, right? And so you start to celebrate your wins and feel good. One step at a time, but focusing on goals, I think, really helped me to start to feel better about myself professionally and personally.
And I’ll tell you, maybe this sounds pathetic, but one of the things I did was I knew I didn’t look good. My face didn’t look right. So I said, “Alright, I’ll just go to the gym every day.” I started working out pretty intensely, and I set all these goals. I’m going to bench this. I’m going to max out this, and, you know, you start to feel good about yourself when you exercise. At any age, I think it helps your mood and makes you feel better about yourself. It builds confidence when you feel good and you feel better about the way you look. Right? So I could control my body. I couldn’t control my face. Believe it or not, that really helped me to start to feel better about myself. Those were some of the things I did to try to bounce back. And one day at a time, one year at a time, start to rebuild who I was so that I could start to push myself out there again because I knew I had to. I didn’t want to live the way I was living.
How my perspective on life has changed
It’s going to sound funny. I probably look worse than I did in 1991. Primarily because I’ve lost so much hair. Now all these scars show. And your complexion starts to change as you age, and I think the radiation made this more red over time. My eye drooped more, my lip pulled up more because there was a cavity. So, you know, that’s there. But I will tell you that it’s all about how you feel about yourself. I mean, I don’t really look at myself in the mirror and get bummed out. I look in the mirror and I get a life perspective. I get reminded of my battle scars as a positive. And I look and I say, “Those are battle scars of healing, not of pain.” And so here’s the funny thing. When I walk down the street now, nobody ever points, kids never point at me. Kids don’t stare at me. Children don’t giggle at me. All that stuff happened when I was in my 20s. I had horrible experiences. So what’s changed? I don’t look any better. What’s changed is how I feel about myself. And I think that’s how people perceive you, right? If you feel good about yourself, people don’t notice you as something weak. I think you just blend in more. But I think people are very perceptive, right? And they see somebody with their head down who doesn’t feel good about themselves. They might look at you twice, you know, instead of just allowing me to blend in, which is what I want to be, I just want to blend in.
I’d never wish it on anyone, but I’m grateful for the experience because it gave me a life perspective. It gave me purpose. It helped me become more empathetic. Those are the gifts in disguise. So I wouldn’t trade it for anything. And I know that sounds maybe strange to some people, but I wouldn’t. I think I’m happier because of what happened to me. And again, I’m grateful. And I’m grateful to the people who cared for me. You know, I speak at nursing conferences, and I share the things that nurses did to help me get through to cope. Their focus is always on better patient outcomes. But I’ll tell you, they’re amazing people. My doctors were amazing people. So just that. Just grateful.
How I’m helping others gain self-confidence
It’s a little different depending on the audience. When I do middle schools and high schools and even colleges, it’s a little bit more about appearance and resilience. So those are great opportunities to help kids and young adults get those lessons and messages that you know, we really shouldn’t judge people at face value. So I go through this whole exercise with them in the beginning and the end to demonstrate and to help seal it in their brains that we all make judgments when we first look at people. Right? But when we get to know them just a tiny bit, we have very different perceptions of who they are. So I try to instill that kind of message for kids that age, because I think it’s important. And then we touched on medical healthcare. I speak to a lot of those audiences, even pharmaceuticals. But it’s really about sharing stories about what my health care team did for me. As a way to share with them the impact that they can have on patients.
What I want people to know
One, I don’t think it’s a bad idea to be a hypochondriac. You hear people criticize people for being hypochondriacs. I think that if you are at some level of unease about something that’s going on, go to a doctor. And I know everybody can’t afford to always do that, right? But you owe it to yourself. It gives you peace of mind. Nine times out of ten, you might be fine. But that peace of mind is just so important. Because that helps with our mental, physical, and psychological being. I would also say to people, don’t allow yourself to be consumed by your illness. When I was going through my own support groups, I found a lot of people had quit their jobs. A lot of people had sort of withdrawn from their lives to focus on taking care of themselves. And don’t get me wrong, self-care is critical. It’s really, really important. But I think you need to have some kind of purpose.
You don’t want to spend a ton of time by yourself thinking about your illness. And so if you’re not doing some level of group therapy or therapy. I think that’s really, really important to share with other people. And here’s one of the reasons why I think that when we talk to our friends and our loved ones, they usually tell us what we want to hear. And I don’t mean that in a negative way. I just think it’s that they love us. Right? So they’re always going to say, “Oh, you’re great. You’re the best, you’re going to be fine.” But when you talk to people who don’t know you, you get different perspectives about things. I think those things become even more meaningful. When they encourage, and when they tell you things that make you feel good in a weird way, I think it’s almost more impactful. I think there’s so much power in sharing your vulnerabilities with other people.
Symptoms: Sore on the tongue, which caused pain during eating and speaking; changes in the color and texture of the tissue where the sore was located Treatments: Surgery (partial glossectomy, radical neck dissection, reconstruction), radiation ...
Mental Health Care is Always Vital Care: Dana’s Stage 4 IDC Breast Cancer Story
A clinical psychologist, wife, and mother of two, Dana first encountered invasive ductal carcinoma breast cancer in 2020 during a routine mammogram. At that time, it was stage 1, and she underwent a lumpectomy followed by radiation. Life moved forward, and for a while, cancer became a quiet memory.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Content Warning This content includes mention of thoughts of self-harm. Please read with care.
Years later, Dana began to experience strange physical changes. A painless bump under her arm lingered, and eventually, small lumps appeared under her chin. Initially, she brushed them off, thinking they were harmless. Only after gentle nudges from her husband and a visit to her doctor did she learn that her underarm bump was a lymph node that required immediate attention. Various scans and biopsies followed, revealing the shocking reality: stage 4 invasive ductal carcinomabreast cancer with liver, bone, and lymph node metastases.
Dana describes feeling stunned and in denial. Her first thought was how to share this news with her children. Although she has lived with bipolar disorder and bouts of depression and anxiety for decades, the diagnosis pushed her mental health to fragile territory. Despite these struggles, she leans on her psychiatrist, counseling services, and her strong support network to help her cope.
Family remains the heart of Dana’s identity and hope. Her husband has been an unwavering source of comfort, stepping in when parenting feels overwhelming. Her children, though deeply impacted, continue to surround her with love. Even the family dog brings daily joy and grounding.
Dana’s treatment plan includes targeted therapy, hormone blockers for her estrogen-positive cancer, monthly hormone therapy injections, and quarterly bone infusions to protect her bones. She has CT scans every three months and occasionally undergoes MRI scans for monitoring. While side effects like nausea, fatigue, and emotional instability are challenging, her scans have shown tumor shrinkage and mostly stable disease. This stability gives her space to focus on her mental health and the relationships that sustain her.
Dana shares her story to remind others with cancer, especially those who also live with mental health challenges, that seeking help is vital. She urges people not to isolate, to accept both practical and emotional support, and to advocate for their needs. Her message: embracing mental health care is as essential as medical treatment.
Watch Dana’s video and browse the transcript of her interview for more on:
Her honest take on living with stage 4 invasive ductal carcinoma breast cancer and mental health challenges
What a small, painless bump revealed about Dana’s health
How family support and therapy became her lifelines
Coping with invasive ductal carcinoma breast cancer beyond the physical impact
Parenting, hope, and emotional resilience from a psychologist’s perspective
Name: Dana S.
Diagnosis:
IDC (Invasive Ductal Carcinoma) Breast Cancer
Age at Diagnosis:
51
Staging:
Stage 4
Symptom:
Appearance of large lump in left armpit
Treatments:
Targeted therapy
Hormone blockers
Bone infusions
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 have stage 4 breast cancer, and I am blessed to live with my husband and two biological children and a wonderful dog. And I was originally trained as a clinical psychologist.
When I first noticed something was wrong
I was initially diagnosed with invasive ductal carcinoma, or IDC, breast cancer in 2020. It was discovered through my yearly mammogram. I had a biopsy, and it was found to be cancer. It was stage one. I had radiation. I had a lumpectomy at the end. You know, I sometimes forget about that time now.
Come a few years later. I had no real symptoms, but I had this bump under my arm, and it didn’t hurt. It just existed there, and I ignored it. I completely ignored it. I thought it was maybe an ingrown hair, so I thought, well, this will reduce in size over time. I’m not worried about it, but it continued to exist, and I continued to ignore it to the point where my husband was saying, “You need to get that looked at.” I rolled my eyes. “Okay,” I said. But I still put it off. One day, I was doing sit-ups, and I felt some lumps under my chin, and then he said, “Go to the doctor.” So I went to the doctor and I said, “I have these lumps under my chin. I think they’re swollen lymph nodes.” He said, “I don’t feel anything off the cuff.”
I said, “You know, I have this bump under my arm.” And he felt it and said, “You need to get checked out immediately.”
People nagged me to get it looked at; it didn’t even occur to me that that could be a lymph node. My father was a pharmacologist. My mother taught microbiology and immunology. So we had a lot of science, a lot of medical knowledge growing up. So I would think that I would recognize a swollen lymph node, but I didn’t. And I wonder if, unconsciously, I put that to the side because I wonder if there’s a part of me that knew that there’s something untoward happening here. And I’m very upset to this day that I ignored it.
What happened next
Therein lies the cascade of appointments and whatnot and biopsies, which turned out to be cancer. Within the lymph node, I still wasn’t that worried. It was still at a low stage. And then I had a full-body MRI. And for some reason, I was able to get the results of that without having anyone speak to me.
I was sitting on the floor in my bedroom, and I remember sucking in my breath, and I said to my husband, “Oh my God, there are liver metastases, bone metastases, lymph node metastases. This is stage 4.” And of course, you know, I’m not a doctor and I can’t officially diagnose that. But that seemed pretty clear to me. And when I talked to a doctor who has since become my oncologist, he said, “Yeah, this is stage 4. We need to get you on treatment immediately.“
The moment everything changed
This kind of stunned silence. I guess I would call it denial. I didn’t register it. I didn’t feel it viscerally that this is stage 4 breast cancer.
My mother had stage 1 breast cancer, and it devastated the family when she was diagnosed decades ago.
My first thought when I heard that I had cancer was, “Oh, my God, how am I going to tell this to my kids?” And I just think a part of me is still in denial. I haven’t really cried about it. I’ve just been in this zone of how do we cope? Next, I would like to cry about it.
My treatment plan
Now that I look back, I think I’ve been very lucky. I’m on targeted therapy and a hormone blocker, because my cancer is estrogen-positive. But progesterone-negative doesn’t really make that much of a difference. Just a little. So, my targeted therapy and hormone blocker. To assist in that, I take an injection of Zoladex hormone therapy monthly. And every three months, I take Zometa for my bones.
I’ve been incredibly lucky. I have a lot of side effects. But they’re atypical.
I have nausea. I become very sleepy very easily. But I think the most profound side effect is that it has impacted my psychology greatly. The combination of my chemotherapies seems to make me very psychologically scattered and unsteady, and running through the gamut of emotions at a moment’s notice. It’s very scary because I don’t feel particularly stable because of that. And recently, it’s been quite profound. So my oncologist is speaking with the associated patient counseling unit to figure out what’s wrong.
The plan is that I get CT scans every three months. I’m getting a brain MRI just to rule out any kind of metastasis, considering my really quick emotional status, if you want to call it that. And then I’m indefinitely on my targeted therapy and hormone blockers, because so far they’ve worked.
My CT scans show that there’s been a shrinkage of all of my tumors. I’m not “no evidence of disease,” but so far, everything is primarily stable. Maybe a tiny bit of progression. But my oncologist says that this is nothing to worry about. And so far, there’s stability. Thank goodness.
How I’m handling my mental health
Before my diagnosis, I dealt with mental health issues for the past 20, 30 years or so. But they stabilized enough to allow me to go to graduate school and earn my doctorate, which was exceedingly interesting. Why do I mention that? Because once I transitioned into my career, my mental health began to really take a hit.
I really, really struggled with that, and tried to function, having children as best I could. Amazingly, I had left my job at a clinic because I felt it. I felt the compensation coming on, and it was bad. I had to quit my job. But amazingly, my psychiatrist put me on a different medication, and it worked. One shift in a medication, and it worked. And I felt great. I felt, quote unquote, normal. I was able to function. I didn’t have any scary thoughts. But a few weeks later, I was diagnosed with cancer, so I only had that break for a few weeks, and then I had the stage 4 diagnosis.
Since then, I’ve been really cool about this and coping and functioning with my family, not isolating myself, and reaching out to people whom I call friends. The downside is that as of a few weeks ago, I had this, what I call a bomb cyclone of emotional energy and wanting to harm myself. And didn’t know where any of this came from. It just hit. I was missing conversations. I knew I couldn’t remember things that I should remember. It’s terrifying. It’s just now coming down a little bit with some medication.
I don’t know if this is related to my past years of mental health issues. But what I do know is that I’ve been reaching out for help all over the place because I cannot live like this. I have to fight cancer, and it’s really hard to fight mental health on top of that.
So it’s a huge juggle, a huge juggle.
Where I find support
First and foremost, my family supports me. My husband, in particular, has been incredible. I feel particularly blessed to have him in my life and to help guide me through this when I don’t feel like I have the capacity to care for my children. It has affected them profoundly, sometimes in really trying and difficult ways. But still, through that, they’ve been incredibly supportive.
I have looked to my newfound friends’ big support just these past few weeks when everything kind of decompensated. My oncologist has hooked me up with the psychiatry department, which in turn has hooked me up with the patient counseling unit within my cancer center. You know, I can’t ask for any more support than that.
I want to have hope
I feel like there have been times when I haven’t had hope, even though I’ve never really felt physiologically that I’ve had cancer. I just haven’t felt anything. So there are times when I feel like I want to have hope.
Will I ever begin to feel something? Will that be my downhill slide? I don’t know. But what I do know is that when I look at my family each day and our dog and all the help I’ve had, it gives me the hope I need when I can’t generate it myself.
Why I share my story
I wanted to share my story because I wanted to shed some light on the intersection between cancer and mental illness. I think, at least in my experience, they’re inextricably bound. And we can look at the difficulties, the fears, the loss of hope, even.
And then if you already have mental illness, such as I do with bipolar two disorder and features of depression and anxiety, you put that on top of your experiences, which are profoundly different than what I might have expected, which was just to deal with the fears and the hopes that you have. But I already have these issues on top of it. And so I’m trying to give voice to reach out, get the mental health help that you need to have the capacity to cope with a really scary diagnosis.
My biggest advice to people going through cancer
Do not isolate. I tend to isolate myself, frankly. Don’t do that. There is help. But you have to advocate for yourself and have your loved ones and friends help advocate for you, to give you the confidence to be able to reach out and ask for the help you need.
I got help through psychiatry and patient counseling. It’s been invaluable. To begin to tease these pieces apart of mental health and cancer.
Don’t sit there by yourself. Reach out to the people you love and the help that they can provide.
If you are struggling or feel overwhelmed, you’re not alone.
Support is available:
988 Suicide & Crisis Lifeline (US): Call or text 988 – 24/7 free and confidential
National Alliance on Mental Illness (NAMI): 1-800-950-NAMI (6264) or nami.org/help
Four-Time Cancer Survivor Teresa is the Definition of Perseverance and Hope through Melanoma, Lip, and Breast Cancer
When Teresa B. talks about her experience with cancer, she doesn’t tell just one story. She’s faced several diagnoses over the years including lip cancer, breast cancer (twice), and melanoma. Through it all, she’s learned what it means to stay resilient and keep moving forward with purpose.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez & Jeff Forslund
Teresa’s first diagnosis came in 2008. What started as a small, persistent spot on her lip turned out to be lip cancer — news that came out of nowhere and upended her life during an already difficult time. The surgery to remove the tumor left visible scars, but it also marked the beginning of something else: her journey toward self-advocacy and learning how to speak up for herself in a complicated medical world. Several years later, Teresa faced a new challenge, breast cancer.
Teresa recalls the paralyzing fear and uncertainty of getting her breast cancer diagnosis, amplified by her family’s history yet absence of genetic markers. Working closely with her care team, she chose a bilateral mastectomy with immediate reconstruction, facing the decision to remove her breasts as both difficult and transformative. Her journey was anything but linear; she experienced significant side effects from her hormone therapy drug, including strokes and heart arrhythmia, which forced her to discontinue the medication. Brain surgery and ongoing health challenges complicated her path, yet she remained determined to stay alive.
Her breast cancer recurred, manifesting across her chest wall, which required intensive radiation therapy. The emotional weight of treatment and frequent appointments was heavy, but Teresa’s support network, especially her girlfriends, provided laughter and comfort. Each checkup brought anxiety, but also relief and gratitude for additional years without disease. Not long after celebrating remission, Teresa faced a melanoma diagnosis. Early intervention and surgery proved effective, resulting in a long-term, cancer-free stretch.
Today, Teresa views life through the lens of breast cancer survivorship, one that involves routine monitoring, speaking up for herself and others, and taking time to reflect on how cancer has shaped who she is. The experience has fueled her commitment to supporting others by launching a podcast and sharing her story publicly. Teresa’s motto, “Not today, Life,” and her message of hope, resilience, and self-advocacy resonate with fellow patients and families. She asserts that while the fear may linger, community, laughter, and a determination to pursue purpose make survivorship more than just an absence of disease; it’s a journey of self-discovery and ongoing renewal.
Watch Teresa’s video and read through the transcript of her interview to learn more about:
Her transformation: From shock and fear to empowerment, Teresa now finds purpose by raising her voice and supporting others
How early detection and acting on subtle symptoms, like changes to the breast, can make a crucial difference
The significance of emotional recovery. It’s as significant as physical recovery, especially when facing body changes and identity shifts
How crucial it is to have a strong support network during treatment and recovery, particularly friends who nurture joy and laughter
A universal truth: Self-advocacy and persistence matter. Patients can and should speak up for their needs throughout the cancer experience
Name: Teresa B.
Diagnosis:
Lip Cancer
Breast Cancer (Recurrent)
Melanoma
Age at Diagnosis:
Lip Cancer: 43
Breast Cancer: 48 (Recurrence: 53)
Melanoma: 54
Symptoms:
Lip cancer: chapped lips and appearance of a persistent pimple-like growth on lip
Breast cancer: swollen and enlarged left breast and appearance of lump (Recurrence: appearance of another lump)
Melanoma: none (discovered during routine skin exam)
Treatments:
Surgeries: bilateral mastectomy with reconstruction, lumpectomy, craniotomy, Mohs surgery, wide local excision
Hormone therapy
Radiation therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I live in Massachusetts. I was diagnosed with breast cancer in 2013.
I’m a four-time cancer survivor. My friends and family would describe me as a go-getter and a warrior. I continually strive to achieve the goals I set for myself. I love traveling, especially overseas. Experiencing different cultures and authentic local foods is something I value. The food in Europe is so much cleaner and purer compared to what we get in the United States.
First signs of cancer: my lip cancer diagnosis
In 2008, during the financial crisis, I lost my job in the tech industry. I started training individuals outdoors in California. My lips were always chapped, and one day I noticed a bump that looked like a pimple. The pain was intense, and my esthetician advised me to see a doctor. After a biopsy, they called to tell me I had lip cancer. I received Mohs surgery, and by the end, my lip was swollen, and I was shocked by the recovery process.
Five years later: breast cancer strikes
I never thought the cancer would come back. When I was diagnosed with breast cancer, I noticed my left breast looked larger. I felt a hard mass, not a lump, which was concerning. My doctor immediately sent me for a mammogram and biopsy, confirming breast cancer.
Understanding my treatment options
I met with oncologists and surgeons to determine treatment. Options included lumpectomy, bilateral mastectomy, and reconstruction with implants. My family has a history of breast cancer with no genetic traces, so I chose a bilateral mastectomy with immediate reconstruction.
The side effects I experienced
My cancer was hormone receptor-positive but non-reactive to chemotherapy according to the Oncotype DX test. I started tamoxifen but soon developed severe side effects, including strokes and heart arrhythmia. Eventually, I required brain surgery for aneurysms and had to discontinue tamoxifen.
Emotional recovery: losing my breasts and identity
Deciding to remove my breasts was difficult. The moment I saw my reconstructed chest, I cried — it was better than expected but still an emotional loss. Later, getting implants restored a sense of identity for me as a woman.
My genetic testing and family concerns
Early on, genetic testing screened for 138 different genes; all were negative. My father died of colon cancer, but I had no hereditary indicators. I was relieved that my three sons wouldn’t inherit any cancer genes.
Breast cancer recurrence: discovering and treating a new tumor
Five years after initial recovery, I discovered a new mass. Extensive testing showed cancer across my chest wall, treated with three months of radiation. Radiation was intense and led to depression, but subsequent scans show I’m six years cancer-free.
Melanoma diagnosis: another battle
In 2019, soon after celebrating the end of treatment with friends, I was diagnosed with melanoma. Early intervention and surgery were successful, and I’ve had no recurrence for six years.
Long-term monitoring and survivorship
Ongoing monitoring includes manual exams and scans. Frequent checks are necessary, but I am moving towards yearly appointments. Survivorship means finding purpose, especially through my podcast and writing — a way to heal myself and inspire others.
Where I found support
My support network of girlfriends was essential. They attended appointments, hosted slumber parties, and helped me find laughter and normalcy during the hardest times.
My message of hope
Hope means you can rise above anything. If you want something badly enough, you’ll achieve it. My motto is: ‘Not today, Life.’ Never give up on yourself, bring in friends who bring joy, and always advocate for your health.
Cancer Details: Previvor 1st Symptoms: Family history of breast cancer, no physical symptoms Treatment: Preventative double mastectomy, direct implant reconstruction
Symptoms: Sore on the tongue, which caused pain during eating and speaking; changes in the color and texture of the tissue where the sore was located Treatments: Surgery (partial glossectomy, radical neck dissection, reconstruction), radiation ...
Symptoms: Severe pain on the side pain that worsened over time, pelvic pain and a feeling of pressure resembling labor, swollen lymph node on the cheek Treatments: Multiple surgeries to remove tumors, targeted therapy (Opdualag/nivolumab and relatlimab-rmbw) ...
“Enjoy Every Sunset”: Matt’s Stage 3 Testicular Cancer (Embryonal Carcinoma) Story
Matt shares his experience with stage 3 testicular cancer. He began to suspect that something was off when he started experiencing nagging lower back pain that he blamed on his mattress. For six months, he brushed off dizziness, fatigue, night sweats, and heart issues, never imagining it could be cancer. Only when he woke up one morning, unable to feel his left leg, did he finally get scans.
Interviewed by: Carly Knowlton Edited by: Chris Sanchez
At first, Matt’s doctors thought he had a sarcoma. They found a tumor the size of a football, which left him shocked and terrified about losing the ability to walk. But weeks afterward, he received the surprising news that it was actually testicular cancer, specifically an embryonal carcinoma. (Editor’s Note: Embryonal carcinoma is a rare, aggressive form of testicular cancer in which germ cells, which would normally become mature sperm cells, instead form a malignant tumor inside a testicle.)
This diagnosis gave Matt hope because it meant that he could have chemotherapy. He started four intense cycles of chemo and struggled with the side effects, which included exhaustion, ringing in his ears, numbness in his extremities, and a constant fire-like heat in his face. The physical toll was heavy, but the mental weight of isolation and fear was just as real.
The treatment worked, shrinking Matt’s tumor to the dimensions of a mango. He later underwent major surgery. Recovery was grueling, involving days lying in the ICU filled with tubes, pain, and the emotional rock bottom of feeling trapped in his own body. But hearing that no active cancer remained was heartening. Slowly, he began walking again, regaining some normalcy and learning to trust his body.
Life after testicular cancer brought both reflection and purpose. Matt became “One Tough Nut Matt” on TikTok, sharing his story to raise awareness and offer the support he himself had once needed. He encourages men to check their testicles, listen to their bodies, and not ignore symptoms. He now savors small wins like watching sunsets, walking on the beach, and connecting with others.
Matt’s story is an authentic reminder that paying attention to your health — and talking about it — can save lives. Watch his video and read through his transcript to find out more about:
How he went from thinking he had a bad mattress to discovering a football-sized tumor in his body
What led Matt to prepare for a life-changing surgery that he thought he might not survive
How he became the “1% of the 1%” and found hope in the most unexpected diagnosis
How chemo pushed Matt to the edge, but how sharing his journey online gave him strength
Matt’s mantra, “Enjoy Every Sunset,” and how it was born from the days he thought he’d never walk again
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I’m from Australia. I was diagnosed with testicular cancer on the 4th of July, 2024.
I’ve always enjoyed getting outdoors, living in Australia. We all live by the beach, right? Everyone grew up along the coast of Australia. Spending a lot of time at the beach, getting out with my mountain bike, was what I loved doing.
I’m funny, often ballsy. I’m always the one going rogue and creating a bit of excitement. I like to consider myself the life of the party, right? I bring a lot of laughter to people’s faces.
When I first noticed something was “off”
I went for a period of about six months, during which I had some really crazy lower back pain.
At first, I didn’t think much of it and kind of ignored it. Then it got worse to the point where I was having trouble sleeping. I was adamant that the mattress I was sleeping on was causing my back pain. So I bought multiple new mattresses, but it only got worse and worse. And this all happened over six months.
I went and saw my chiropractor, and he had some concerns and said, “Matt, if you wake up and you feel like you lose any feeling in your legs, you need to go get these scans done.” A couple of days later, sure enough, I woke up and I couldn’t feel my left leg anymore. And that’s what triggered me to finally get a scan.
I had dizziness, fatigue, night sweats, and lots of heart issues. I was put on a high blood pressure medication. I was put on heart rhythm medication for issues that my watch was telling me I was having with my heart. I kind of never really pieced those symptoms together as being something serious. It was only after the fact that I was like, “Well, hold on a minute.” I never had these symptoms before six months prior. So all those things were my body telling me that something was wrong, but I just never listened to the signs.
The moment everything changed
The radiologist came out, and I remember him asking me, “How long have you had back pain?” And I said, “Look, six months, kind of laughed it off.” And his words were, and I’ll never forget them, because it was like he had seen a ghost. “I think we’ve found the reason why you’re in so much pain. I’m going to call your doctor and see if he could arrange a few more tests.”
So I remember lying on that table, waiting for him to come out; it felt like a lifetime. And in that moment, I remember everything flashing in front of my eyes and ultimately him coming out and doing another CT scan, but with contrast this time. And it wasn’t until a few hours later that I’d get a call from my doctor to tell me that they had found something.
I was originally misdiagnosed
She said to me, “Look, Matt, they found a sarcoma.” And I went, “Okay. What’s that? Like, what do I do for that?” She said, “Look, it’s not that big. It’s about the size of a pencil, but it’s really long.” And I said, “What do you mean? What are we talking about here?” And she said, “It’s a muscle cancer.”
There are only a few specialized clinics in Australia that deal with sarcomas. So I was seen by a surgeon the very next day after being diagnosed. He said, “Look, you’ve got this tumor growing in your psoas muscle,” and I said, “At least it’s not very big.” He said to me, “Oh no, Matt, it’s very big.”
They’d actually made a typo on my original report. It wasn’t the size of a pencil. It was the size of a football. They’d confused a few of the measurements. So he said, “It’s really serious. Sarcomas are really serious.” And I said, “Okay, so if I have cancer, we’re talking about chemo, right?” And he said to me, “Chemo is off the table. It’s not something we can do for the type of cancer you have. We think you have a really aggressive, fast-growing muscle cancer, which is a liposarcoma. And the only treatment that we can do for you is to rush you into surgery and hopefully cut it all out.” He added, “Your tumor is growing along your spine on the main artery that supplies the blood to your legs. It’s growing against your kidney. It’s growing into your femoral nerve.”
At that point, I didn’t even know what a femoral nerve was, but I now know that it’s the nerve that supplies blood to your thigh down to your knee. And it allows you to squat, allows you to run, allows you to bend your knee. And I said, “What does that mean? Am I going to be able to walk after this surgery? He said, “You will be able to walk, but you’ll just have to learn to rewalk in a new way because you’ll have no control over that left leg.”
And in that moment, it all hit me. I went silent. I couldn’t talk anymore because for me, it was a massive deal to not be able to walk properly ever again.
When I found out the correct diagnosis
On that drive home, I received a call from my surgeon. And I thought, “What is going on? Why would the surgeon be calling me? I literally just saw him.”
He was calling to tell me that the biopsy results had come back, and I didn’t have a sarcoma. I actually had testicular cancer, and I had what was known as an embryonic carcinoma. A really rare type of testicular cancer, but it was testicular cancer, and he couldn’t be happier.
I was so confused. I’m like, “Why are you so happy? Is this a good thing?” He said, “This is an amazing thing. Your survival rates have just shot through the roof. The surgery is off. We’re going to send you straight away to start chemo. This is the best-case scenario. You already had the rarest type of cancer. You are now the 1% of the 1%. Take this as a miracle. This is your Hail Mary. You’ve got a chance.”
I was literally in disbelief. I did not see it coming. I had psyched myself up that I was going into this major surgery. I was going to walk through those doors at 5 am for a nearly 12-hour procedure, and I didn’t know if I was going to walk out of it again.
So I was in shock. Hey, how have I just gone through the last three weeks preparing for the worst, and now I’ve just had this miracle happen to me that I have testicular cancer? And it’s something I should be excited about. It was just like a whole massive mind spin for me.
I wanted to be excited, but I also just realized that I just found out that I had testicular cancer. How many people celebrate when they get told they have testicular cancer? I was now one of them.
My treatment plan
I basically got sent in to see an oncologist straight away, a specialist in testicular cancer. They found a very small lump, smaller than a pin, on my left testicle. And from there, they worked out that I had an embryonic carcinoma. Only around 20 to 40 people get it each year here in Australia. So it is really rare. It was considered a very aggressive cancer.
So they needed to go hard, and because of the size of my tumor, having surgery straight up wasn’t an option. It was, as I said, growing faster every day and bigger than a football. It was in my retroperineal. So it meant that it was really hard to get to. So they needed to shrink it. And the plan was to try to shrink it to get me ready for a pretty major surgery, but hopefully with better outcomes, where I could still walk properly.
So we did four cycles of chemo.
The side effects I experienced
The chemo I took is notorious for being rough. Those who have gone through it can attest to that.
For me, straight off the bat, in the first week or two, I started losing my hearing. I had ringing in my ears. I lost the feeling in my hands and feet. My face always felt like it was on fire. I had watched too many movies, and I had assumed that when you went through chemo, you would lose a lot of weight because you’d always be sick all the time, but the opposite was true for me because of the steroids they put you on to help with some of those symptoms. I couldn’t stop eating. I was eating five or six meals at a time. I’ve never been that hungry in my life. I just lost 20 kilos before I was diagnosed. I put on 10 kilos in eight weeks during chemo. But the biggest side effects for me were definitely the loss of feeling in my hands and feet, and the overall toll that chemo takes on your body.
I went through a trial for my chemotherapy. So, although this kind of chemo has been around for a while and is the mainstay for testicular cancer, they wanted to see if they could give it to me faster. So instead of having the break weeks, I just went back-to-back in these chemo cycles. So by cycle three, I was an absolute wreck. I couldn’t stand. I was so fatigued and exhausted. I couldn’t even talk. I went through periods of well over two months where I couldn’t put a sentence together. And everyone who knows me knows that I’m a talker.
We managed to shrink the tumor from being football-sized to the size of a mango. They wanted to do a retroperineal lymph node dissection or an RPLND, and we went in for one.
Although they had to take my psoas muscle, they were able to save the nerves, the femoral nerves. So I’m still able to walk normally, which is fantastic. While they were in there, they also found some tumors on my liver. So they did a liver resection. And they also found a hernia in my groin from the tumor. So they went in and fixed up the hernia as well. So that was a nice surprise waking up to that.
What recovery after surgery looked like
I woke up in the ICU after the surgery. I was cut open from my ribs all the way down to my groin. I obviously lost my abs. I had too many staples to count, well over 100, and I realized in that moment that this was going to be a tough few weeks recovering.
I had tubes coming out of everywhere. I had tubes down my nose, down my throat, in the side of my throat, in my stomach, in every arm. I had catheters, cannulas, everything. It was just machines everywhere. I had been prepared for some tubes. I knew I was going to get a tube in my throat and in my arm. I was told that I might need some sort of tube to drain my stomach, but no, nothing had prepared me for what I was going to wake up to. It was overwhelming. That was when reality set in, and I was unable to move because I had no core strength anymore. I couldn’t breathe.
And I was just constantly hearing machines beeping, and I was just going, “What is going on? Why is everything beeping?” The doctors said, “You’ve got to breathe, Matt, keep breathing.” It’s laughable now, but at that moment, I was just struggling.
And so this is the thing they don’t really talk about much. When you go on bleomycin, it causes a lot of damage to your lungs. But something they don’t tell you about is that when you have surgeries and so forth after it, you can’t be given a lot of oxygen because it can cause a really dangerous side effect. So my oxygen levels were dropping really low, but they weren’t able to give me much oxygen to bring them back up. So it was a perfect storm.
So I ended up spending three or four days in the ICU. I was not recovering well. My stomach was not draining well, so it was collecting a lot of bile, and it constantly needed to be pumped. I was also draining a lot of fluid from the incisions. Mentally, I was at rock bottom. I really struggled with having tubes down my throat. I knew I was going to have a tube, but I wasn’t prepared for how big it would be. And it really made me spiral, and it was probably the lowest part of my treatment. And that was where I hit rock bottom and could no longer mentally cope with what was going on. So I was heavily sedated to get me through the next couple of days. I was then relocated to a ward. And I spent well over two weeks in the hospital recovering.
Ultimately, we got a Christmas miracle, and on Christmas Eve, I was discharged after spending the night before watching the classic Christmas movies and crying myself to sleep because I was sitting in the hospital and I couldn’t move. I was discharged and sent home, and was able to spend Christmas with the family. But the next day I found myself back in the emergency. So at that point, my stomach had slowly started to restart, but I got a little bit ambitious. I’d gone from chicken broth in the hospital, so clear liquids, to trying to have a sandwich. And the sandwich was just too much, and my stomach went back into paralysis. So I couldn’t stop being sick. And at this point, I still had a thousand staples. So I risked bursting my stomach.
I was sent to the ED, the emergency department here, while I frantically tried to contact my surgeon to work out what was going on. He ultimately called them back and said, “Look, Matt’s going to be all right. There are no blockages. They did some scans. We don’t need to put the tube back in.” And they actually said you can take out the staples.
The best news that I got was that they got the pathology results back from the tumors. I sat down with the surgeon a week later. And I was told that there was no active cancer found in any of the tumors they took out, which was the best-case scenario.
I was in shock because I’d been given so much bad news over the seven or so months before it that I became so immune to positive news. I just didn’t think that was something I would get again. I just thought nothing would ever improve in my situation. Chemo really did a number on me. And although I fought every day and took it a day at a time, it wore me down. So by the time I had the surgery, I just wanted it done. I wanted to just move on. But I also felt like I was never going to be allowed to move on. So hearing that news was absolutely, absolutely amazing, to be told that there was no active cancer, and I didn’t have to go through another cycle of chemo.
How surgery impacted my life
I’d been off work for seven, seven or eight months. I’d regressed in the sense that I didn’t go out. I was so scared of getting sick. I was so paranoid that I was going to get unwell and end up back in the hospital that I self-isolated in many more ways than one.
I was lucky to be surrounded by so many supportive family members, friends, and work colleagues who were all backing me up. So I never once felt alone. I felt like no one really understood my situation, but I never felt alone, and I had a group of friends that would come around and really back me up when I was at my lowest. They were there to cheer me up, take me out, and show me that there was life after cancer, and that really got me through those tough days.
Things have been limited — even now, I’m still slow on my feet, although I’m able to walk normally, I did lose a muscle in my leg after all. So my body has to relearn how to do some things. It’s an adjustment.
I’m hoping to get back into the gym and get back to the beach this summer and get back to a bit of normality and socializing, doing things with my family.
How I managed being diagnosed with cancer so young
It was a shock. I’d never had a health scare in my life. I’d never been through anything significant like this before. And it really caught me off guard. I don’t think I was mentally prepared for the storm that I was entering. As every young guy does, you think you’re invincible. And that’s how I lived my life. I’d just been on a health kick. So I thought I was in the best shape of my life.
I really thought I was invincible. And life really threw that curveball at me. I would say I probably handled it better than I thought I would, mainly because I was told that I had something so bad that the chance of survival, long-term survival, was really tough, right? So then, when I got told I had this second lease and opportunity, I was thankful that I could have chemo. I was thankful that I could have this surgery. Whereas I think if I didn’t have that scare at the start, it probably would have been a different process because I just would have been so caught up in just getting cancer.
So I do think that helped me, and that kept me on this positive track the entire time. I was always forward-looking.
It was a tough one. I’ve never been the manliest. I’ve never been the most alpha. I’m a pretty passive guy, right? So it never really dawned on me that I was losing some of my masculinity or anything like that. I was actually happy to see the removal of this testicle. It had caused so much damage in my body and almost killed me that I was happy to see the back of it.
I constantly get asked, “Do you miss it?” Some people even say, “You must feel like less of a man.” Not at all. I might have one ball now, but I’m twice the man I was before.
That’s how I live my life now. That’s the message I’m spreading to everyone as I tell my story.
How I spread awareness
I met with my oncologist for my three-month check-in. He said to me, “Matt, you’ve had the biggest tumor that we’ve seen, and you’ve come through your diagnosis. Are you going to write a book now? What are your plans? You’ve achieved something remarkable.”
I never really thought about it like that. I know so many people go through this, and I’m not unique. But he’s said, “Well, you kind of are.”
I went away for a week and thought, “What can I do to give back?” And the first thing that popped into my mind was, “What did I do when I needed help?”
I went to TikTok and I reached out to other testicular cancer survivors and people going through treatment for help, and it was slim pickings. So I thought, “Well, why don’t I get on there, put myself out there, talk about a topic that no one else really likes to talk about?”
So I got my handle, which was the hardest part, “One Tough Nut, Matt.” That’s my persona. I’m one tough nut and that’s how I’m going to I’m going to tell my story.
I started doing lives to try and encourage people to follow me and to ask questions and ask all the things that I didn’t know. I didn’t know what testicular cancer was before I was diagnosed. I thought that was prostate cancer, and that was something only older people get. I had no idea that testicular cancer was the most common cancer for young guys. None whatsoever. I didn’t know that I had to check for lumps. It was just something that never came up. I started with one or two people in my lives. And just earlier today, I got up a live with over 300 people at one time, which is just blowing me away with the support. I’ve had thousands of followers join me over the last couple of weeks. My videos are blowing up, and it’s been awesome because I’m starting a conversation about something guys don’t really like to talk about.
I wake up every morning to so many messages of support. So many views of my videos. But most importantly, my inbox is flooded every day with someone starting their journey about testicular cancer. And I’m answering all the questions that I wanted answers to. And it might be silly to some, but when you’re in that bubble, you want those little things answered, and Google can’t help you with that. Like, when will your hair actually start growing after bed? Why does it hurt when you get the injection on day six? All the little things that no one really tells you about, and you can’t go to Google for.
I do that, but it’s almost scary that I wake up every day to someone new who’s starting treatment, about to get an orchiectomy, and they need some support.
That live that I was just on, the moderators had to block nearly 200 people for hate and trolling, and I wake up to messages most days saying that they hope my cancer comes back. There are some days when I wake up and just go, “Should I keep doing this?” It’s a heavy emotional burden to carry. But I’m blown away by all the other people who do support me, people who moderate, help me answer questions. We have around 20 to 30 testicular cancer survivors on the live each night that answer questions for everyone else.
How I look at life now
I get asked a lot, “Has your perspective on life changed? Are you going to quit your job? Are you going to move to another country?” And my answer is no. But I don’t overthink the little things anymore. That’s been a massive perspective change for me, right? I don’t sweat the little things anymore. And my catchphrase that I say at the end of every TikTok live is enjoy every sunset. And by that, I mean, enjoy every day.
When I was told that I might never walk properly again, all I wanted to do was run. And I hate running. When I was sitting in a hospital bed, all I wanted to do was go outside because I couldn’t. So now I enjoy every sunset because it’s those little things that make life so important. It’s so clichéd, but when you can’t do something, it’s all you care about. So at the end of every day, I sit out and I watch that sunset and I’m just grateful for another day.
One of my TikTok followers actually just sent me a shirt yesterday, and it has “Enjoy Every Sunset” printed on it. My favorite one is actually this shirt here that she designed. I was blown away that someone would go to that effort. That’s what keeps me doing this stuff because I know I’m having an impact.
I received a message from someone who said, “Because of you, I went and got checked. I have testicular cancer, and not for a minute do I ever think that I’m not gonna make it because I watch your videos and you inspire me every single day.” So I’m like, “Okay, I gotta keep doing this.”
How often I’m monitored
I’m on surveillance scans. I’m checked every three months. The type of cancer I had is really aggressive. The chance of it coming back is most likely in the first six months to a year. So we’re keeping a close eye on things. On my last scan, something did show up in my lymph nodes in my lungs. They’re not confident it’s the cancer returning, given that my tumor markers aren’t elevated.
What survivorship looks like to me
I spent six months where I couldn’t look in the mirror because I couldn’t face reality. It almost tears me up just talking about it, but I couldn’t face reality, right?
I almost disconnected that I was going through cancer. And now that I’ve come out of it, I disconnected that I was a survivor. But this whole process that I’ve done to talk about it on TikTok has actually been beneficial for me. It’s almost like free counseling because every day I get to talk about it. I get to talk about the things on my mind. I get to unpack it. And there are so many days that I’ll be talking to other people going through treatment for testicular cancer or any type of cancer, and I’ll remember things that I blocked out and hidden away in my brain during treatment. I’ll be like, “Yeah, that did happen. I did have that issue, and this was a complication for me.” And that is why I say the second part of survivorship for me is being able to help others.
I’ve gotten through and survived every one of my bad days. So that’s a constant reminder to me now that I can continue to fight every day. Things might not go according to plan, but I’ve survived every single day, and I continue to do that every day. And now I want to help others do the same.
What I want others to know
The tip that I give everyone and the comment I always say is “Check your balls.”
I was never told to do that. But look, I am a little bit unique. I didn’t have any stage one symptoms, which are lumps, swelling, pain, and changes in testicle size. I skipped stage one and escalated things along and ended up just having back pain.
But now that I’m out here educating everyone about how to check and keep an eye out for testicular cancer, back pain is a symptom of testicular cancer.
Trust your body. I went six months ignoring symptoms. I thought there was no way I could have anything serious. I definitely didn’t think I had the C word. I should have listened to my body and worked out that something was wrong and taken that scan. So if you know your body best, if something doesn’t feel right, talk to a professional. Don’t do what I did because I could have had a better outcome if I had caught it a little bit earlier.
How Ali Faced Stage 2 Colorectal Cancer While Pregnant and Became Her Own Best Advocate
Ali’s story of living through stage 2 colorectal cancer is both inspiring as she speaks from the heart. She first noticed that something was wrong after a summer trip to Italy in 2023, when she started suffering unrelenting bloating even after just a sip of water. At first, she blamed the food she and her husband ate there, then started suspecting hemorrhoids when she began noticing occasional bleeding during bowel movements. But as months went by and the bleeding became more frequent, especially during her pregnancy, she trusted her instincts and pushed for a GI consult. That self-advocacy led to a flexible sigmoidoscopy while she was 25 weeks pregnant, which revealed a rectal mass.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Ali’s life shifted dramatically. She navigated high-risk pregnancy care, sought a second opinion, and coordinated closely with her OB-GYN. Her doctors recommended waiting until 35 weeks to deliver her daughter before starting chemotherapy for her colorectal cancer, balancing her health with her baby’s safety. Postpartum and in the middle of chemo, Ali embraced small joys such as walks by the beach, music classes with her baby, and time with family to keep her life grounded and meaningful.
Chemotherapy brought its share of challenges. Ali endured fatigue, nausea, neuropathy, cold sensitivity, and even anaphylactic reactions that turned infusion days into 12-hour marathons. In the face of these side effects, she leaned on her support system and remained vigilant about her care. Her active role in decision-making, from seeking second opinions to adjusting her lifestyle, was key to her empowerment.
Over time, her efforts and her team’s careful planning paid off. By the end of 2024, follow-up scopes showed the tumor had shrunk significantly, and by early 2025, she celebrated being in remission. Now, Ali continues close monitoring with regular MRIs and scopes, all while embracing a cleaner, healthier lifestyle and a new appreciation for family time and self-care.
Ali’s story is a reminder that noticing symptoms early, advocating for yourself, and holding on to hope can make all the difference. Watch her video and read through her interview transcript for more details about:
How bloating after a holiday led to a life-altering diagnosis
The pivotal moment Ali didn’t cancel her scope appointment
Navigating postpartum life while undergoing chemotherapy to treat stage 2 colorectal cancer
The lifestyle changes Ali swears by after remission
Why self-advocacy can be life-saving for young moms
Name: Ali R.
Diagnosis:
Colorectal Cancer
Staging:
Stage 2
Symptoms:
Rectal bleeding
Thin stools
Bloating
Treatment:
Chemotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I was diagnosed with colorectal cancer, stage 2, in May of 2024.
When I first felt something was wrong
In the summer of 2023, my husband and I went to Italy, and I came back, and I just felt abnormally bloated. And then it didn’t go away. At first, I thought, “Oh, it was just all the cured meats and pasta that we were eating in Italy.” And it didn’t go away all summer. It got to the point where I would take a sip of water, and I would have to unbutton my jeans, like that’s how much I was bloating.
That went on for a few months. And then, in the fall of that same year, I started bleeding with my bowel movements. And it wasn’t constant. It wasn’t every single time. But it was enough for me to be like, “That’s weird.” I have had hemorrhoids before, so at the time, I was not concerned at all. I was like, “Oh, okay. It’s got to be the hemorrhoids.”
Then we were trying to get pregnant. I did get pregnant and found out in December. My symptoms actually kind of went away for like a few weeks. I wasn’t bleeding anymore. And then my symptoms came back pretty strong at the end of January, February. I was bleeding almost every single time I had a bowel movement.
It was red blood. A lot. I was seeing a group of midwives at the time, and I brought it up to them. And one told me that she wanted me to go see a GI specialist. She’s like, “At least establish that care relationship. It sounds like way more blood than you should normally have with just hemorrhoids.” So I did that. I went to a GI and without any hesitation, she was like, “I’m scheduling you for a flexible sigmoidoscopy.” It hit me at that moment that this could be something serious and that it might not be just hemorrhoids. Although in my head I still was like, “This is probably hemorrhoids.” So then I scheduled it.
How I felt before my scope
I had my scope coming up in a couple of days. I was feeling great. I honestly had a wonderful pregnancy. Like a dream. I loved being pregnant.
It was a beautiful day in April, and we went to hang out on the beach. And I knew I had a scope in a couple of days because I was bleeding rectally. And to be honest, I didn’t think anything bad was going to come of it. So that day, I told my husband and my mom that I wanted to cancel it, and I was way more afraid of the actual procedure of the flex. I was getting a flex sigmoidoscopy, which, even as a nurse, I didn’t even know that you could do that while pregnant.
So I was way more afraid of the procedure. I was afraid of something happening to my baby. I was afraid it was going to hurt because I knew I was going to be awake. So that was the only thing on my mind that day, and I was planning on canceling it. And for some reason, I just stuck with my gut, and I didn’t end up canceling it, thank God.
I was scheduled for a flexible sigmoidoscopy
I went to the hospital to get the procedure done. It was May 2nd. Again, I wasn’t really thinking about the results; I was just thinking about the actual procedure itself.
My husband came with me. I was in the pre-op room, getting an IV and getting checked. They had to do fetal monitoring the entire time just to make sure that the baby was okay. And they had a an L&D nurse come down to monitor. And then they took me in for the procedure. They can’t monitor the baby during the procedure, but they monitored her pre-op and post-op.
So then I went in for the procedure. It was very quick. It was probably 15 minutes, tops. And at the very end, the doctor told me, while I was still lying on the table, that he had found the source of the bleeding. I could tell by the tone of his voice that it wasn’t hemorrhoids. It was something bad.
So he told me he found a mass in my rectum, and I feel like I just blacked out, honestly. The nurse who was taking care of me was holding my hand, and I actually used to work with her in the ICU, where I started as a nurse, so that was very comforting in that moment, since they don’t let your significant other in the room with you.
So they wheeled me back, I started crying, and then my husband was there. They brought me to the recovery room and started talking about it. They didn’t say that it was definitely cancer, obviously, because they had to biopsy it.
So the doctor did biopsy it. He did tell me brutally and honestly that he thinks it is cancer. And I could just tell by his tone that he knew it was. So he right away established care for me through a surgeon and oncologist, and everyone that he recommended within the system that I was currently at. They also brought down my midwife because they were in the hospital surroundings. And then she brought down a high-risk doctor that she recommended because I couldn’t see the midwives anymore. After all, mine was now considered a high-risk pregnancy. So I met my new high-risk OBGYN. She was incredible.
I was 25 weeks pregnant.
There was a lot of crying and hugging. And then as we were leaving, I called my parents and they drove up right away. And again, even though it wasn’t confirmed as cancer at that time, I knew it was so.
The moment everything changed
The next day, I was checking out MyChart on my phone. And I was just refreshing it for the next 24 hours, like I feel anyone would do in my situation.
I saw that the results were up. My husband and I were sitting on the couch just waiting, and I couldn’t open it. I just couldn’t do it. He was like, “Why don’t you just wait for the doctor to call? As soon as they get the results, they’re going to call anyway. You don’t want to read it and freak out and not talk to him and whatever.”
Of course, I couldn’t wait, so I opened the results. I saw that it was positive for adenocarcinoma.
And then my doctor called, probably two minutes after I opened it, and he just talked me through it. He was amazing.
So this was also like the week of Mother’s Day, and my husband had gotten me a blanket as a gift for my first Mother’s Day. I’m looking at it right now. It has my ultrasound of my daughter on it, and it says something like, “I can’t wait to meet you. I’m so excited for our adventures together.” And all this beautiful writing on it.
I feel like my life was flashing before my eyes at that time because I was just, like, how did the word “cancer” come up? I haven’t even met my daughter yet. Am I even going to be able to have these adventures with her?
I was just panicking that I wasn’t going to be able to actually be her mother.
Why I decided to look for a second opinion
I looked outside where they recommended with the system that I was in, because I wanted to get the best care that I could get. I was 32 and pregnant, and I wanted to tackle this in the best way.
So went to New York City. I went to Memorial Sloan-Kettering, which is amazing.
I was very confused at the time because I knew Memorial Sloan-Kettering doesn’t have an OB-GYN, and I wasn’t sure how they wanted to tackle this. On that end. And I was pregnant as well. So what ended up happening was I saw the doctors that they recommended. But I decided not to go that route. One wanted to do surgery on me while I was pregnant, and that just didn’t sit well with me. So that’s why I got a second opinion at MSK.
Once at MSK, I absolutely loved them. My doctor made me feel so comfortable. She told me that we can absolutely keep the OB-GYN that I’m using. That I did not have to seek anyone else because they’re going to coordinate with each other and figure out the best route to go. This was to wait to treat my cancer, and also deliver my baby early. But not too early where it’s not beneficial to her.
So they had agreed that waiting till I was 35 weeks pregnant was going to be ideal. She said it wasn’t a fast-growing cancer. And that ten weeks wouldn’t make a huge difference. So we waited ten weeks, and then we scheduled a C-section for 35 weeks.
About the ten-week frame. I was panicking. I didn’t like the idea of knowing that I had cancer in my body and waiting ten weeks. I felt like I was stuck. Okay, I want to do what’s best for my daughter. We cannot deliver her right now. Also, I know that they can give chemo while pregnant. But my doctor felt like I was far enough along where we didn’t need to do that. And then also, obviously, that worried me about her being in my belly and giving me chemo. So I wasn’t nuts about waiting ten weeks, but I do feel like it was the best option. So I just kept reassuring myself that that was what the doctors recommended and that we’d get to it as soon as she was out.
The day my daughter was born
It was July 8th, 2024. I went in for my C-section, which I wasn’t happy about either.
Obviously, I wanted to have the birth that I wanted to have. I wanted to at least try to have, you know, a vaginal delivery. So I did feel kind of stripped of that opportunity. And the whole reason that they wanted to do a C-section was that they were afraid that if I tore where my rectal tumor was, it was too close and that it would mess with it. So the surgical oncologist that I saw highly recommended a C-section.
My doctors were amazing. I had two doctors whom I was primarily dealing with at the OB office. One was the one who met me the day that I found out at the scope. Actually, I was scheduled with the other doctor, but then she came in on the day of my delivery, on her day off, just to be there, and it was so comforting. I couldn’t have asked for a better team.
And she came out and delivered her. I’m a NICU nurse, so I know that at 35 weeks, the babies tend to do pretty well if they’re born at that time. Unfortunately, my daughter had to be intubated, which I was not expecting at all. But I guess because it wasn’t spontaneous labor, and they were taking her out of my belly at 35 weeks. She wasn’t ready to come out. So they did have to intubate her and admit her to the NICU. She did great.
But I was on the table during the C-section and knew that that was happening. And I started spiraling. I started panicking, so yeah, they had to give me a little something to calm me down.
And then I was obviously so eager to go see her in the NICU. So, you know, there’s a certain amount of time you have to wait after a C-section to be able to get up into the wheelchair to go see your baby. But I made it happen in a few hours, and they were all very supportive. They all helped me. So it was an amazing day. Minus the struggles.
I’ve always wanted a big family
I just knew I wanted multiple kids. So I had actually seen a fertility doctor while I was still pregnant. I’m a planner. So normally, if someone were to get diagnosed with cancer and they were pregnant, they would probably go and preserve some eggs. However, since I was pregnant, I couldn’t do that, obviously. So I went and spoke with him. I think he was just doing it to make me feel better. And he was like, “I can take a look. It’s all about whether I can reach your ovaries. I’m telling you, I’m most likely can’t. And your hormones are not going to be where they’re at while you’re pregnant.” But to make me feel better, he made the appointment for me to go in to see if he could reach my ovaries. I think he was just doing it to appease me. Which I appreciated, but obviously that didn’t happen.
Basically, my oncologist told me they’re not 100% sure how it affects fertility. They have had many, many women get pregnant after the chemo that I was on. It’s happened naturally. Some have had to do IVF. They don’t know if it’s because of the chemo or not. So it’s still a concern of mine. I tried to take my focus off that for a while, since there wasn’t anything I could actively do about it. And even after I had delivered my baby, I asked how long it would take before I could preserve some eggs. And the fertility doctor told me it would take at least two months for my uterus to shrink back down and for the hormones to be where they’re at before we could retrieve eggs. I wasn’t going to wait another two months on top of that, and my oncologist was highly against that as well. So we went ahead with treatment and just crossing our fingers for the next future child in our lives.
The factors that weighed on my treatment decision making
One of my factors was infertility, and another was having an ostomy bag. So the doctor said that normally, even with those concerns, she treats patients right away with chemo. So I was on chemotherapy. It’s a combination of three different chemo drugs. It’s actually mainly used for late-stage cancers and pancreatic cancer as well. Even though I was stage two, she wanted to attack it with the most aggressive chemo, so that we wouldn’t have to look down the route of radiation or surgery. I was petrified because I heard the side effects are life-altering, and obviously, that really affects infertility. And it puts you into menopause.
They say surgery isn’t always the first choice with rectal cancer because of where the tumor is. So it’s there’s a difference between rectal and colon cancer. So obviously, if it’s up in your colon, they can go in and resect that. And it’s easier to do in your rectum. You’re getting down to like the anal sphincter. And it gets very, very complicated. And a lot of the time, you can end up with a permanent colostomy bag. So they always try to avoid that.
First, they see if they can just knock it out with chemo.
My treatment plan
I did eight treatments of chemo. It was supposed to be every other week for four months. It ended up being a long five and a half months.
At first, it started as a six-hour day. In my first couple of sessions, I was like, “This is a piece of cake. I could do this.” I didn’t feel horrible. That was the first two sessions. I was just getting a headache. I was very fatigued. Obviously, no hair loss yet or anything like that. I had AD nausea. A lot. And then the third session came. And the fourth. And it just it got harder and harder. My body was fighting it.
They had to delay the third or fourth treatment, which is why it ended up going from four months to five and a half months. There were a couple of sessions that I couldn’t do because they always check your blood count beforehand, and I was found to be severely neutropenic, so they had to hold off until they could get my levels back up. And that’s when they started giving me an injection to help with the neutropenia.
There are also side effects. You get a ton of bone pain, which is like the weirdest feeling in the world. And then by the fourth or fifth treatment, I started having some severe allergic reactions. It was a full anaphylactic reaction from the one chemo drug, and they basically told me it was too early for me to have those. Usually it’s not until the last treatment that it happens to people.
So I think it was the fifth treatment. And once that happens, they have to do what’s called a desensitization and basically run the chemo over a very, very long period of time. So I was in that chair for at least 12 hours every treatment since then. It was an anaphylactic reaction, where it started as a tickle in my throat, coughing, and bronchospasm. And then I couldn’t breathe. So, in addition to it taking 12 hours, they also had to start basically drowning me in Benadryl and steroids and fluids. So another huge side effect I actually got was weight gain. And the steroids they give you will result in what they call moonface. So I didn’t feel like myself.
I lost 90% of my hair. I couldn’t make the move and shave it. People are so brave. I just kept what was there and just threw it on top of my head and put headbands on. Now my hair is growing in quickly.
The other side effect that I had was pretty significant neuropathy. Thankfully, it’s almost 100% better now. I had it in my hands during treatment. It went away when I stopped, but it stayed in my feet. So the worst of it is when I wake up in the morning, it hurts to walk. I would limp, I would get more numbness and weakness with the neuropathy, and less of the burning. Some people get that burning sensation. I didn’t really get that. And then the other side effect that I got was the cold sensitivity with the one chemo. So it would last about an hour until a couple of days before my next treatment. I wouldn’t be able to drink or eat anything cold. If I were to touch and pull something out of the freezer without gloves on, it would feel like pins and needles to the ninth degree. It was awful.
Obviously, there’s also joint pain. I actually still have aches. And then I would get really bad stomach pains as well when I would have to use the bathroom. And another GI symptom I got was diarrhea. And then I was also throwing up only at the last treatment.
There are probably some side effects I’m forgetting. But those were the worst ones, the ones that stick with me.
Being a new mom while navigating cancer
It was my first time being a mother, so I really leaned on my support system. This was my whole family, my husband’s family, and my friends I was in contact with.
The thing that I did the most to create some sense of normalcy was just going on walks. We live right by the beach. It’s beautiful here. I just felt like when I would go out for a walk, get some fresh air, everything just felt better. That’s like my happy place.
I didn’t 100% limit myself to everything. I still went to social events. I did everything that I still could do that a new mom would do. I would take her to music classes. This would all be obviously when I was feeling okay, it would usually be during the week I was off chemo. And then the week that I was on chemo, I would give myself time to rest and just sit at home with her and have my mom or sister over.
So I think it was very important for me to still live basically a normal life.
The cancer is gone
My last chemo day was in December, right before Christmas. I was so happy.
That was a rough day in itself. But my friend works where I was getting treatment, and she set up the whole room, decorated the whole room for me. She and my mom did it. It was so cute. So it was a great day. And then in October, a couple of months before that, I had a follow-up scope just to kind of see what the tumor looked like. And at that time, it had shrunk down to almost nothing. So I felt very, very positive about these last remaining treatments. I was nervous too, though.
In December, I finished chemo, and then on January 2nd, I had my follow-up scope to see if the tumor was still there. I went up to New York. My husband stayed home with my daughter, and I brought my parents to New York. We went to go see the tree. It was a nice little day. And then we found out that my tumor was gone. And it was the most relieving feeling in the entire world.
Again, they couldn’t 100% confirm it at the time because they still had to biopsy what was there. But the doctor basically told me, “This is scar tissue. I’m almost sure of it. I just have to biopsy it.” And then I got the results the next day, and I was in remission. And it was like the best feeling ever. I felt over the moon.
So for monitoring, I go every 3 to 4 months for flex sigmoidoscopies and for MRIs. I had a follow-up in April for both. I had an MRI and a scope. Everything was good. And then every year I have to get a full colonoscopy. So I did just get that in June, at the end of June, and everything looked great. So my next MRI is in a week from today. And then I get a scope following that as well. So it’s every 3 to 4 months.
They just watch me very very closely. They call it “wait and watch.” And so far so good. Obviously, I get so much anxiety with those. But I feel like staying positive has helped me so much this whole journey.
My lifestyle has completely changed
I was a night shift nurse. I always knew it was bad for you working nights. Now, I won’t ever risk doing that again. My doctor agrees. That’s why when I go back to work, I’m going to the day shift. The doctor said that the night shift is detrimental to your health, to your hormones, everything. So I feel like I’ve had to shift my whole mindset.
I don’t know what caused this, you know? So I have changed a lot of aspects of my life. I’ve made so many changes in my home of things that I put on my body daily. I do toxin free. I use those apps and I scan everything to make sure there’s nothing harmful in the products. The cookware that we use. We changed all that out. I changed all my cleaning supplies. I changed my body wash, everything. And now I’m also super vigilant about what I give my daughter as well. We use glass bottles for her milk.
Before cancer, I was the type of person who went, “Who cares? What is that really going to do to me?” I would burn these terrible candles all the time. And someone said to me, I think it was my sister. “Those are really bad for you.” And I was like, “I can’t not have a candle, I don’t care.” Well, my mentality has completely changed about all of that now.
I try not to go overboard with it, though. I try to find a fine line between that and not caring at all. We can’t detox from every single thing in this world. So I just try to find the most important things.
I also used to drink alcohol a lot. In my 20s, I would go out a ton. Obviously, since being a mom, I don’t really do much anymore. But that has changed drastically as well. I really don’t drink alcohol anymore.
I will say that I think it’s important to still live your life and do things that make you happy. So if I’m out to dinner and I want a glass of wine, I’m going to have a glass of wine. I don’t really enjoy things the way that I used to, but I’m also fine with it because it’s giving me peace of mind.
What I want others to know
Stay positive. It’s so much easier said than done. But I swear, the fact that I stayed so positive is what got me through it.
I also know that it’s my daughter who got me through it, because I truly believe if I were diagnosed and I didn’t have her, if I hadn’t been pregnant, I would not have handled it as well as I did. So for anyone who is going through this who’s a new mom, I can especially relate to you. Just know that you can do it for your kids. Your kids are everything. And my daughters and my husband are what got me through it. If you don’t have kids, then whoever that most important person is in your life, do it for them and for yourself.
Listen to your body, try to do things that make you feel as normal as you can. Again, that’s what got me through it.
I have a friend who was diagnosed at the same time. I met her over social media, and she had the same cancer I did, but it was stage 4. Everyone hears “stage 4,” and they freak out. It’s not a death sentence anymore. You know, our medicine and research are so far along now that there’s so much hope for everyone with these diagnoses. So there’s always hope.
“Are you a smoker?” Ashley’s Stage 4 HER2+ Lung Cancer Story Challenges the Stigma
Ashley was diagnosed with stage 4 HER2+ lung cancer in August 2023. At 32, she was enjoying an active, healthy life, practicing yoga, hiking, and learning to ski, when she began to experience subtle but ominous symptoms. Over several months, she began to struggle with fatigue, breathlessness, and back pain. She went to see several doctors, but they thought she had bronchitis or musculoskeletal issues, mostly because she had no history of smoking.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
The stigma surrounding lung cancer often links it to smoking, which can lead to delayed diagnoses in non-smokers like Ashley. She was asked time and again about her smoking history, and learned to emphasize that lung cancer isn’t only something that smokers get. Eventually, thanks to her physical therapist’s persistent advocacy, she ended up having an MRI that revealed that cancer was at the root of her symptoms. Later on, she had a bone biopsy, which confirmed that she had stage 4 HER2+ lung cancer. (Editor’s Note: HER2, short for Human Epidermal Growth Factor Receptor 2, is a protein that regulates cell functions, including cell growth and repair. HER2 mutations tend to be more common in non-small cell lung cancer patients with little to no smoking history.)
Ashley’s experience highlights the challenges young cancer patients, especially women, can face. She was hit hard by the diagnosis, and it was all the more agonizing because she and her husband had to shift abruptly from thinking about starting a family to confronting the reality of lifelong treatment for lung cancer. But in the face of these challenges, Ashley’s spirit was buoyed by her support system, her abiding love for teaching, and the quickly evolving landscape of targeted therapies to treat cancer.
The HER2-targeted therapy Ashley is currently on, which was approved shortly before she needed it, has proven effective in controlling stage 4 HER2+ lung cancer. Although she sometimes struggles to deal with tough side effects like fatigue and nausea, Ashley is still very thankful for the quality of life her treatment affords her. She also wants to emphasize that palliative care isn’t necessarily the same thing as end-of-life care; it’s about enhancing one’s comfort and well-being alongside active treatment for cancer.
Ashley’s story is a reminder of the importance of self-advocacy, the need to challenge lung cancer stigma, and the hope that advances in medical research offer. Watch her video and scroll down to read her interview transcript for more about:
How she lived an active and healthy life, yet was diagnosed with stage 4 HER2+ lung cancer — how her story challenges the stigma
Why palliative care isn’t just about end-of-life
How Ashley’s symptoms went unnoticed for so long
The question she’s tired of hearing: “Are you a smoker?” Her story reveals why it matters
From teacher to lung cancer advocate — Ashley’s resilience is truly inspiring
Name: Ashley C.
Age at Diagnosis:
32
Diagnosis:
Non-Small Cell Lung Cancer (NSCLC)
Stage:
Stage 4
Mutation:
HER2
Symptoms:
Fatigue
Breathlessness
Persistent back pain
Multiple rounds of bronchitis
Treatments:
Chemotherapy
Targeted therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
My name is Ashley. I have stage 4 non-small cell lung cancer. I was diagnosed in August of 2023.
My husband, in particular, tells me all the time that one of the things he loves about me is my compassion and empathy for others. It’s partly why I’m a teacher. I really care about others and helping my community. And I think that’s what all my friends and family like about me.
When I first noticed something was wrong
I’ve always been a relatively healthy person. I remember in the winter of 2023, I got really sick for like a month, and that was out of the norm for me. And eventually, I went to the doctor because I was just having trouble breathing. Going upstairs was difficult. And I was in really, really good shape at the time. So that was just weird to me. And they were like, Oh, yeah, like no pneumonia. We took an X-ray. It’s clear. It’s probably just bronchitis. Take some antibiotics. Here’s an inhaler. You’ll be fine. And then it got a little bit better. And then, in April, the same thing happened, where I just got sick for about a month. Really out of breath. It was very out of the norm for me. Even if I got a cold, usually I would be over it very quickly. And then around the same time, I was sitting at work, and I just readjusted myself, and I felt this weird, like, popping sensation in my back. And then over the next few days, it just felt like I had thrown my back out or like there was a muscle issue. Eventually, I went to the doctor and got it checked out. And because I was a pretty active person, I did yoga multiple times a week, I went hiking, and I was learning how to ski. They just figured I had just done something to mess up my back. And they said, Go to PT and get back to us if anything changes.
And while I was doing physical therapy, it just progressively got worse, to the point where we weren’t even able to actually like get into doing stretches or exercises because every appointment was just about sort of managing pain. And it was my physical therapist who finally reached out to my primary care doctor, saying, We need to do some more imaging because this is not normal. I’ve never seen someone my age in my condition without a really good explanation as to why I was experiencing the amount of pain I was in. And so that was when that kind of prompted my primary care to say, “Alright, well, let’s at least get an MRI, and we’ll set you up with a neurosurgeon because they deal with facts, and we’ll take it from there.” And that’s when it started to snowball into not necessarily a neurosurgery issue, but an oncology issue. It was pretty quick, right after my initial MRI, that the radiologist reached out to my doctor’s office, saying, “This is serious. This isn’t just an injury. This is something that needs to be biopsied and dealt with quickly.” That was the initial result before I underwent all sorts of tests. It was like they knew it was probably cancer, but what type of cancer? Everybody was really confused at that point. And I just looked everywhere because nobody seemed to have a great explanation as to why, without many other symptoms. I had already had signs of bone metastases.
I have no smoking history
They looked at breast cancer. I had mammograms done. They were looking at different blood disorders like leukemia, lymphoma, and things like that. They were doing tests for all of that. They weren’t looking for lung cancer. I didn’t have a CT scan until after they had already known it was lung cancer. And then in my initial diagnosis, I remember being asked multiple times by my oncologist, So you didn’t smoke, you weren’t a smoker. And it was pretty frustrating. And I remember my husband and I going, “No, I’m not a smoker. I don’t know how many times I can tell you.” They almost didn’t believe me at first. My parents were smokers, but they never smoked in the house or the car with us. It’s not like I was exposed to all this secondhand smoke either. I had pretty much the same exposure most people do, which is occasionally the people in your life are smokers, but not anything significant day in and day out.
What happened next
I was actually in the car going away for the weekend because it was my birthday. So we had planned a long weekend with some friends. I got a call from my primary care office, and the doctor said, “This is serious. They found a tumor.” Generally, he said, “In my experience, when we see this kind of imaging, it’s cancer somewhere else. So we need to find that.” And he was great because he reached out to the oncology practice associated with my primary office and said, “I want her to have an appointment next week.” He ordered a bunch of blood tests. In the meantime, he told me, “If you can get up to date on preventative vaccines and things like that, regardless of where this goes, I want you to be protected against things.” He put things in motion very quickly. I was very thankful for that. Once we met with my first oncologist, she had ordered a biopsy of the tumor that they had found in my back. And then other things like bone scans, blood tests, things like that. The biopsy of my bones was what revealed that it was lung cancer.
The bone biopsy was the hardest part of this whole process. It’s probably one of the worst medical procedures I’ve had in this whole process. Thinking back to it gets me all flustered again because it was a really sort of traumatic day. I had no idea how difficult it was going to be. And up until this point, I had been really healthy. It was the first time I’d ever really been in the hospital for a procedure. At that point, we didn’t know what to expect. I just wasn’t thinking that it was going to be a big deal. Neither was my husband. And I remember calling him afterwards and telling him, “You need to come back now.” And now with that experience, he’s pretty much always with me because we just never wanted to experience that again.
I ended up with, I think, a total of seven vertebrae that have tumors in them. I have a fractured rib that just won’t heal because of all of this. The crazy part is I only had one tumor in my right lung and a couple of nodules in my left lung. It had already spread to other parts of my body. I was lucky that it was just bones and lungs. Two years later, it’s still just bones and lungs, which is great. I’ve never had issues with my liver or my brain, which are two common places for lung cancer to spread. I have had more nodules pop up in both lungs. But for the most part, it’s been pretty well controlled. The confusing part for me was that I had chest X-rays done. And they didn’t see it, but I guess my tumor was small enough. It’s only when people have really large tumors and lung cancer that X-rays pick them up, which was not something I knew. They said, “Your tumor is small enough that a few months ago it was probably even smaller. We’re not surprised they didn’t see it on an X-ray. That was my big question, I asked, “I had a chest X-ray four months ago. Wouldn’t you have seen it?” And they said, “Not necessarily. Your tumor is really not that big.”
“You’re going in, you’re doing the right thing. You’re getting looked at. And the easiest, most basic test isn’t sensitive enough to pick it up. I’m sure if you looked at it knowing where the tumor was, I’m sure you know, knowing what we know now, you might be able to see it, but if you’re not looking for it, I guess it’s just not that obvious.”
The moment everything changed
I laugh because I feel like the media, like movies and TV shows, has put this perception in our head that, you get to a moment where you’re told, “Okay, you have cancer,” and it’s the first time you’ve ever heard it. In my case, it was more like drips and drabs. After my first MRI, we were pretty sure that I had cancer. It was more like, What kind of cancer? After the bone biopsy, that was when I knew it was lung cancer, because the bone biopsy had shown it. Basically, they can tell where the primary tumor is. And I actually got that through MyChart. And I remember I was sitting, I was out on vacation with my husband and several of our friends, and I got the notification on my phone. And we were out at dinner. And that’s when I pulled up the report and saw what the report said, took a deep breath, put my phone away, and then just tried to continue with dinner and having fun. And later that week, we went in for an appointment. And that’s when they started to explain what it all meant. I didn’t realize the full severity of my diagnosis until about a month later, when I was getting a second opinion at Dana-Farber. And my oncologist really kind of laid it out for me that my cancer wasn’t curable. It was very serious. That, although it would probably not be my case, because I was young and I was otherwise healthy.
It’s a 6 to 12-month survival type diagnosis. He was confident that that wasn’t going to be my situation. But, he’s also very much a data-driven provider. He said, “I can’t make any guarantees. This is just what we see in the data. But the vast majority of people are much older than you. They’re smokers. They have other health issues. You’re young, you’re not a smoker. The rest of you is perfectly healthy. I have faith that we’ll be able to give you a lot more time.” But we were really angry that this severity wasn’t stressed to us by my first oncologist because they were they were still talking to me about wanting to have kids, wanting to freeze eggs, things like that, which sends the message of, you’re going to get beyond this. There’s going to be a day after treatment. Which is not the case. I mean, hopefully, there’s some breakthrough, but realistically, that’s not what’s going to happen. That was really tough. It was kind of sort of like drips and drabs of learning I had cancer and what my diagnosis meant.
My family’s history of cancer led me to a new cancer center
My father had gotten care at Dana-Farber, and they were amazing. And my sister in law had breast cancer, and she had gotten care at Dana-Farber too. So we already knew several people who had gone there. And we always knew that, at a minimum, we wanted a second opinion there. We were willing to give my local hospital a chance. And we also didn’t want to delay initial treatments or anything like that. I did start chemo locally. But then, once we kind of realized that they were downplaying my diagnosis, we decided to make the switch. For anyone who is reasonably close to Dana-Farber, I always say call them because they know how difficult it is with insurance and scheduling, and appointments. They know how challenging that can all be. And they do work hard to streamline it. All I had to do was make a phone call, and they took down my basic information and who my doctor was. And next thing I know, they’re calling me and they asked, “ Do you have an appointment on this day?” And I was like, “Do I have to do anything else? Do I have to send you things?” They went, “No, no, no, we got it.” They did all the heavy lifting. And now to this day, whenever I have scans, appointments, anything like that, they’re great at scheduling things. And really doing a lot of the heavy lifting. It was definitely more challenging. At first, before I was getting my care there because I was having to do a lot of that. I was having to do a lot of calling and follow-ups, and trying to make all the appointments work, and making sure I was getting to the lab on time, and making sure I was getting this done in time.
Now that I’m in the Dana-Farber system, they just do a great job at scheduling all that. I’m thankful that I’m part of a healthcare organization that tries to put patients first and helps us navigate that easily.
How I learned about my biomarker
They did a blood biopsy pretty much right away once they knew it was lung cancer. And then they also once took a biopsy of my actual tumor. They did additional testing because I guess sometimes there are some tests that on the physical tumor, it’s a little bit more sensitive than the blood biopsy. I saw that it was HER2, but at my time of diagnosis, there were no approved treatments for lung cancer. This will be good in the future, either for clinical trials or if things do get approved. About four months before I saw progression on my first line of treatment, the FDA approved a HER2-targeted therapy. So I’ve been on that now for almost a year. It’ll be a year in August. And I still have no progression. We’re hoping that more HER2 treatments get approved before I see progression. Unfortunately, because of where my tumors are, it’s hard to measure tumor growth in bones. I’m just not a great candidate for clinical trials, because with clinical trials, you need to be able to really measure bone growth, our tumor growth. And in bones, it’s not the same as if it’s in your liver or your brain or things like that. So while I’m thankful I don’t have tumors there, it is also nerve-racking because I’m worried about progression without other HER2-targeted treatments available.
I trust my doctor’s treatment decision
It’s crazy how fast the cancer space can change as new drugs come online. My current treatment, which is a targeted therapy for HER2, is now being considered part of the first-line treatment. Whereas, for me, it’s been my second line. My first line was a more traditional chemotherapy. And I did four rounds of heavy chemo before my body started showing signs of not being able to handle it anymore. I was having a lot of liver enzyme issues and things like that. We dropped one of the drugs I was on and then just stayed on basically a maintenance chemo dose, and that was able to keep me progression-free for about a year; that was my whole treatment regimen. We made the switch to the targeted therapy when I had two PET scans in a row, six weeks apart, showing a lot more activity, not just in the bone metastases, but there were also multiple nodules popping up in my lungs. And that’s when we made the decision. My oncologist has been really good about being like, “If we’re just seeing a teeny tiny bit, we can probably hold off switching.” He always uses the expression, we only have so many tools in the toolbox. So we want to use all the tools till they’re not useful anymore. We have talked about radiation on individual spots, particularly the bone metastases. But again, we’re holding off on that because you can only do so much radiation. And then, through all of this, I did find out I have a rare genetic disorder that makes me predisposed to cancer. Radiation is very highly discouraged for individuals with this genetic disorder. It’s kind of like a last resort option. Because I’m at just such an elevated risk for developing additional cancers, we don’t want to set that off.
What life has been like on a targeted therapy
I’m going into my 18th round in a couple of weeks of my targeted therapy. I did have to take a break for a while because I was experiencing some lung inflammation, which is a known side effect of this particular drug. And we were trying to suss out whether it was due to the drug or just due to being sick and having lung cancer. My lungs are just more apt to experience inflammation. Eventually, we determined that it was more likely than not just being sick and my body trying to heal, and not the drug. Luckily, that was proven to be true. Because if it were the drug, then I wouldn’t be able to continue on the drug, because the lung inflammation is such a serious issue. The guidance is that once you experience this kind of inflammation, you have to discontinue the treatment. I think there’s a perception that because it’s targeted, it’s somehow going to be easier. And it’s actually been a really challenging drug to be on.
I’ve had multiple dose reductions. And I’ve also had to add in a bunch of extra things like extra fluids and stronger nausea medicines than I had been taking before. That’s been challenging. I’ve had to take off a little bit more work after treatments than I had in the past. Because I’m just very fatigued and nauseous. And that’s been challenging. Luckily, I have awesome nurses who work hard to make sure I’m in the best shape possible, leaving there and then. I now work with a palliative care team that has been good about adjusting medications and finding sort of different routines for me to help make that post-treatment week a little bit easier. But overall, I’m grateful that this drug was approved when it was, because had it not been, I would have had to go to a harsher, older chemo that is less effective. And I might have been in the position where I might have had to stop working or things like that because, as difficult as this drug is, I know it’s not as difficult as some of those older ones.
I’m living my life in three-week increments
Sometimes you get invited to things and you have to tell people, “Hey, it’s really going to depend on where my treatment is and if I’m feeling up to it. And I’m really not going to know until we get a lot closer.” And that’s been really challenging, I think, to kind of get used to being comfortable saying that to people. Totally unrelated. I happened to change jobs right when I was getting my cancer diagnosis. And I always joked, “Who quits their job and then finds out they have cancer?” And it actually has turned out to be a great thing. Not that I didn’t love my current or my former teaching position. But the position I’m in now is so great, and my administration and school district are just amazing at making sure I have everything I need and the time off that I need. So professionally, that was just like a change unrelated to my cancer, but it has actually been a great move for me. They’re just very open and supportive of everything I need. Professionally, I think I need to get used to taking time off. I was just not someone who ever really took a lot of time off. So being comfortable doing that and not feeling guilty and not feeling like I’m letting my students down by being absent has been a big growth opportunity for me. And that was really challenging at first to be comfortable taking the time that I needed.
The decision to have biological children was taken from me
I was getting to the point where even things like going to the bathroom were difficult because I was just in that much pain. So the idea of delaying treatment to freeze eggs or embryos — I quickly was just like, “No, this is crazy. If we get on the other side of this, there’s always adoption and foster care and other options out there.” When I realized, though, that this is going to be sort of a lifelong treatment, that was hard because even though we had gone back and forth about having kids and hadn’t really made a decision yet, it then felt like the decision was taken from us, but it still does make me sad sometimes to know that I won’t have that opportunity. It gets exhausting sometimes. I find that I’ll go several months where I’m feeling good, and life is good, life is great. And then usually it’s around a week when treatment hits me really hard. I’ll get pretty down. And, you have those thoughts of, “How can I keep doing this?” I think mental health is a huge part of treatment. And I’m lucky that through my treatment at Dana-Farber, I’m able to get mental health counseling.
My message of hope
My mom passed away from cancer when I was a toddler. And when I talked to family about what she went through, the drugs were so harsh.
The fact that we’re living in an age where you can have these really serious diagnoses and still have a quality of life. And still work, still participate in your hobbies and things like that, that to me is amazing. And that’s what keeps me going. I remember all the people that we’ve lost in the past who weren’t able to have the quality of life that I have. Because the drugs have just gotten so much better, and treatments have just continued to improve every single day. So even if I never get cured, I’m hopeful that the next drug that comes on the market is going to be that much more effective and that much more able to be easily tolerated and will give me that much better quality of life.
What I want others to know
While you’re young and healthy, do the things that you want to do. If you want to go visit a country, figure out how to make it happen. If there’s a restaurant you’ve always wanted to go to, save up the money and go to the restaurant. Don’t wait because you might be too incapacitated to do that. The only other big thing in my story is just through the testing that we had done. And then my personal family history of cancer. I found out I have a genetic condition called Li-Fraumeni syndrome. And through that, I’ve told people that it’s not normal for there to be multiple people in your family tree having cancer. And if that’s the case, even if you are okay, I encourage people to talk to their doctors to look into genetic testing. Because if it’s not, it’s not normal to get cancer young, and it’s not normal to have multiple aunts, uncles, grandparents, and parents with cancer. If you’re going through your family tree and several people have had cancer, it’s definitely worth the conversation. Because even compared to ten years ago, what they know about cancer genetics has definitely grown. And if I had known that I had had this genetic condition years ago, I would have been getting screenings that would have been able to catch my cancer.
Symptoms: Persistent cough (months), coughing up a little blood, high fever, night sweats Treatments: Chemotherapy (4 cycles), maintenance chemotherapy (4 cycles) ...
