Author: Chris Sanchez

October 17, 2025

From a Tanning Obsession to Stage 3A Melanoma: Brittanny’s Unexpected Skin Cancer Experience

Brittanny’s experience with stage 3A melanoma is eye‑opening and deeply relatable. Growing up in a small town where she loved dance, cheerleading, and soaking up the sun, Brittanny never imagined that a simple mole could change her life. In 2021, at only 27, she was diagnosed with stage 3A melanoma. She had no real warning signs aside from a growing, dry, and ugly mole on her shin. She felt tired at times, but as a young mom raising a family during the COVID-19 pandemic, she dismissed it. Her yearly skin checks were routine until one missed appointment in 2020 led to a life‑altering discovery the next year.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez & Jeff Forslund

The diagnosis didn’t hit immediately. Brittanny didn’t even know what melanoma was when her dermatologist first said the term. It only sank in when her oncologist calmly explained the seriousness: this was skin cancer that could spread internally, and she needed surgery and a PET scan. Having a young son at home and hopes of growing their family made the news even more devastating.

Brittanny’s treatment involved surgeries and a year of immunotherapy. The medication taught her immune system to recognize and respond to melanoma cells, but it came with digestive side effects and a permanent change in how her stomach feels. Still, she focuses on being alive and present with her family. Today, her follow‑ups are down to once a year, and she finally feels free to live summers without needing to work around appointments.

Through this experience, Brittanny discovered her purpose. She now advocates for skin cancer awareness and speaks openly to lawmakers about the importance of cancer research funding. She wants people to understand that melanoma can be deadly. Skin cancer, of any type, should never be minimized, despite being the most common form of cancer. She supports others facing a similar diagnosis, reminding them that their lives and stories matter.

Watch Brittanny’s video and read the transcript of her interview for more about her story.

How she didn’t think she had any symptoms until a simple mole changed her life
A young mom discovers her tan addiction could have heavy consequences
From cheerleader to cancer advocate: how melanoma gave Brittanny a new purpose
What happens when a mole on your shin becomes stage 3A melanoma
Brittany never thought skin cancer could be serious, until it nearly took everything

Name: Brittanny G.
Diagnosis:
- Skin Cancer (Melanoma)
Age at Diagnosis:
- 27
Staging:
- Stage 3A
Symptoms:
- Mole that enlarged, changed shape, and became dry, patchy, and flaky
- Fatigue
Treatments:
- Surgeries: wide local excision, lymphadenectomy
- Immunotherapy

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

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

Transcript of Brittanny’s Interview

My name is Brittanny
I only had one symptom
The path to my diagnosis
The moment everything changed
When the diagnosis finally hit me
My treatment plan
The side effects I experienced during treatment
What my follow-up appointments look like now
What cancer showed me
What I want others to know

My name is Brittanny

I was diagnosed with stage 3A melanoma, skin cancer, in 2021.

I grew up in a very, very small town. My mom put me in dance when I was three years old. And then I was a cheerleader in school. So my earliest memories are of growing up and being a little girly girl. I loved dressing up. I loved being on camera.

I only had one symptom

What disturbs me so much is that nothing was indicating that I was sick. I did not realize that I ever had cancer until I went to the dermatologist and they told me. And it took me being diagnosed with cancer and having all the surgeries and getting to the point where I had to comprehend how serious melanoma was, which took months into my diagnosis.

I had to look back and really dig to see if there was anything that could have told me that I had cancer. And the only thing that I can think of is maybe I was a little bit more tired than usual. But again, I was a young mom. My son Jackson was five or six. He was just finishing up his first year of school. We were in a pandemic. So all these things were changing in my life.

There was nothing that made me think, “Oh yeah, I have cancer,” other than the fact that, of course, I had a mole on my leg that was growing, and it was huge and it was ugly. But I didn’t feel sick. I didn’t look sick. Nothing.

The path to my diagnosis

I’ve told this story many times. I had been going to the dermatologist yearly for a couple of years before my diagnosis, just because I had health insurance and Medicaid. I learned about Medicaid and all that. But through getting Medicaid, I learned that I can have doctor’s appointments of all sorts. I call it my guilty conscience.

One of the first doctor’s appointments I scheduled was a skin check. I had grown up lying in tanning beds and lying in the sun outside. I was obsessed with tanning and being tan. You can even call it addiction. In my youth, my teenage years, I was always outside in the summer. So, long story short, I began to schedule appointments with a dermatologist. I was going to skin checks year after year after year, and getting clean results.

But come 2020, I missed one skin check because of quarantine. And in 2021, I had my yearly skin exam, and that’s when they found it. So it was just terrible timing. Just bad luck and terrible timing, mixed with a guilty conscience. That was the only reason why I even went to a dermatologist to begin with. At some point in time in my life, I had heard that tanning beds cause skin cancer, and of course, I had lain in tanning beds. And so my risk of skin cancer was potentially higher than most people’s. And all of that together, one plus one equals two — I have melanoma now.

So it was on the very front of my shin. I could see it every day. It was in a very easy-to-see spot on my body. It wasn’t like it was on my back, where I couldn’t see it. Right. So that’s a good thing. I saw it growing. I noticed it was ugly. And I also noticed that it was getting dry.

The moment everything changed

It was business as usual. I went in and they said, “Hi, how are you? Is there anything concerning that you want me to look at?” And I said, “I guess this one on my shin.”

Two seconds later, the doctor said, “That’s melanoma.” And I said, “What’s melanoma?” Which is hilarious because I’d been going to skin checks time after time. But I was 27 years old. I can’t emphasize that enough. I’m sure in the past, in every skin check I’d had, I’d been educated on what melanoma was. I’m certain that it went through one ear and out the other, because what 20-year-old thinks they’re going to get cancer? I wasn’t in a state of mind where I was learning what these types of skin cancers are.

I didn’t react to what the doctor said, because I had no idea what melanoma was. I guess it could have been different. If I knew what it was, I might have been like, “Oh, wow, that’s the deadliest form of skin cancer.” I might have started bawling in that moment had I known what melanoma was.

I had to come back the next day to get it biopsied, and they sent it off. It was probably a day or two later that they called back and they confirmed that it really was melanoma, and that I was going to have to schedule an appointment with an oncologist.

When the diagnosis finally hit me

Yeah, I remember that was the first doctor’s appointment that I went to where I cried because she was the one who sat me down and explained everything to me and my partner. That’s the first appointment where I finally broke down and bawled my eyes out, because I finally realized that this was serious and that I was about to have to change my life forever.

The doctor told me that I was going to have a second surgery after my biopsy, a wide local excision that would get bigger margins to try to remove all the cancer cells from my shin. Because I had delayed getting that melanoma checked out for so long, it had potentially spread internally. And that was terrifying because I learned that a simple mole can be cancer, which was just blasphemy to me. How on earth can a mole be cancer? That’s just mind-blowing to me. Secondly, how can it spread internally? All these things were circulating in my brain, and it was just insane.

The doctor also said, “You’re going to have to get a scan called a PET scan, where they put you in a machine. They scan your whole body to see if the cancer has spread internally. It could be anywhere in your body: your brain, your liver, your lymph nodes. And I’m just thinking, “I have a five, going on six-year-old son at home. We’re just starting our family.” We were planning and hoping to expand our family and have more kids. I think that’s the moment when I knew that this was serious.

My treatment plan

They did the wide local excision and a sentinel lymph node biopsy. They found that the melanoma had spread to only one lymph node in my groin, which was excellent news. So they removed that lymph node from my groin. And basically from there, I was cancer-free. Good to go.

My oncologist then recommended immunotherapy treatments. I use the drug called Keytruda. I had 18 rounds of Keytruda every three weeks for an entire year. Keytruda basically teaches your body to fight off the cancer cells. So if the melanoma cancer cells try to return to the body, the immune system would do what it was supposed to do the first time and fight off those cancer cells. However, the downside of Keytruda is that it has some pretty severe side effects, and it can alter you. It changes your immune system. But I’m still alive today because of my immunotherapy. And of course, I’m really happy that I’m still alive.

I got a port installed in my chest. I have a little scar here still. So the hospital took a few vials of blood and sent them off to the blood lab for testing. They then hooked me up to an IV through my port, and I got fluids. It’s like the influencers on Instagram who get vitamins and stuff through IV. It takes about 30 minutes..

The side effects I experienced during treatment

My side effects were mostly digestive issues. I had a lot of stomach pain, a lot of air. I would burp and pass gas a lot. My stomach would also often hurt. It wasn’t to the point where I felt like dying. My stomach felt yucky, pretty much all the time. It wouldn’t ruin my day, though. I could still get up and live my life; I just felt heavy.

Now, my stomach always feels heavy and full, and I have to go to the bathroom a lot more than normal. I have colitis now, so I have episodes of really bad stomach pain. If anybody has colitis, ulcerative colitis, or Crohn’s disease, you probably know what it’s like. I had one pancreas attack that was more because I wasn’t getting help with my colitis sooner. That was like a niche situation. But yeah, it’s mostly stomach issues, which, you know, I can deal with.

I’m alive. That’s the biggest thing. I’m happy to be alive, and I’m not dealing with melanoma. I’ll take it.

What my follow-up appointments look like now

It was pretty hefty initially afterwards, because I had to go to the doctor every three months for PET scans. And I had my lymph nodes, ultrasounds, and skin checks. But then it went to six months. Now, I’m about I’m three years out and I get checked every 12 months.

I feel like this is the first summer that I’ve actually gotten to live. I got to go on three vacations that I didn’t have to schedule around doctors’ appointments. I’ve actually enjoyed myself and felt free.

At the back of my mind, though, I’m always afraid, because melanoma has a high chance of recurrence. And that’s my reality. So every day that I live, in some sick way, is one day closer to the day it’s likely going to recur.

But I am just trying to keep my spirits up and enjoy every single day.

What cancer showed me

I feel like I have so much more purpose now.

Before, I was living, but I wasn’t living with much of a purpose. I was just kind of here, doing what I was supposed to do, getting up, going to work, raising my family, and so on. And now I have purpose.

It’s not like I don’t have bad days. I still have bad days all the time. We’re always going to have bad days. But even during my bad days, you know what? It’s fine, because I’m alive and I get to live those days, and I’ll do better tomorrow

I really hate cancer, don’t get me wrong, but I love the fact that I get to advocate for cancer now and use my voice to help people who are going to be diagnosed with cancer today or tomorrow or next year, as well as those who have already been diagnosed with cancer.

I never had a purpose before cancer. I didn’t know what I wanted to do with my life. And now that this thing was thrown at me, I’m able to use it for good. I just went to Washington, DC, and got to talk to my senators and my congressman about how it is so important that we keep funding cancer research, because I literally would not be alive today if immunotherapy didn’t exist.

It’s just so fun to use this for good. And I don’t know, it just makes me happy.

What I want others to know

The biggest thing is that skin cancer is serious. It’s really sad to me. And something I never thought that I would deal with after being diagnosed with melanoma is the number of people who, after I tell them I had skin cancer, would go, “Oh, you’re fine. It’s not serious.” I never thought that I would be diagnosed with cancer and then have to defend myself that my cancer or my type of cancer is serious and could actually kill me.

So I just want people to genuinely take it seriously and quit minimizing people out there in the world who are dealing with skin cancer every day. Just because it [skin cancer] is the most common form of cancer does not mean that it’s the least serious form of cancer. And I feel like that’s what we have to deal with so much. And it’s really sad, and it hurts us all.

Thank you for sharing your story, Brittanny!

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A Trainer’s Strength Tested: Shawn’s Stage 3 Testicular Cancer Journey

Post author By Chris Sanchez
Post date October 17, 2025
No Comments on A Trainer’s Strength Tested: Shawn’s Stage 3 Testicular Cancer Journey

October 17, 2025

A Trainer’s Strength Tested: Shawn’s Stage 3C Testicular Cancer Journey

At first, Shawn and his doctor were sure he had suffered a workout injury, not testicular cancer. As a trainer who spent his days in the gym, soreness and a little swelling seemed like the kind of thing that could happen with the job. His doctor agreed, saying, “Oh, you’re fine. It’s probably something you did [working out],” and scheduled what was supposed to be a simple, routine surgery.

But when Shawn woke up, everything had changed. The procedure revealed both seminoma and non-seminoma types of testicular cancer. The diagnosis came just a week after he’d finished reading Lance Armstrong’s book about surviving the same disease.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez & Jeff Forslund

Doctors initially thought Shawn had a condition called varicocele and hydrocele, brought on by his role as a trainer and suggested minor surgery. It was during the procedure to fix things when his surgeon was shocked to discover that he had testicular cancer. After being told, Shawn remained calm and focused on his next steps. He underwent an orchiectomy to remove the cancerous testicle and researched the best treatment options. Despite setbacks with a local doctor, he found a supportive medical team in Indiana. The doctor warned him about the aggressive treatment’s severity, but Shawn accepted the challenge, beginning chemotherapy soon after.

At UNC Medical Center, Shawn underwent intensive chemotherapy. He balanced treatment with work, receiving infusions for five consecutive days each week. Despite the hardships, he maintained a positive outlook. Shawn’s connections with medical professionals, many of whom were his clients, provided additional support.

Throughout treatment for his testicular cancer, Shawn faced physical and emotional challenges. He lost 45 pounds and experienced changes in his appearance and senses. Despite these struggles, he found ways to remain mentally strong, employing visualization techniques and drawing motivation from supportive relationships. His network, including fellow gym members, attempted to provide normalcy, though their visits sometimes added stress.

The impact of cancer extended beyond physical health. Shawn’s marriage became a casualty of his cancer. Thankfully, his mother offered consistent support. Reflecting on his journey, Shawn emphasized that cancer itself is often a manifestation of internal imbalances. He consequently advocates addressing stress and having a positive attitude as essential components in combating disease.

After 4 months of treatment, Shawn entered remission, though the fear of relapse remained. Ongoing check-ups were daunting, but he gradually adapted to the uncertainty.

In sharing his testicular cancer story, Shawn emphasizes the importance of not delaying treatments until desperate. He accordingly encourages proactive health management and emphasizes the power of a positive mindset in helping deal with life’s challenges. Furthermore, he advises discovering one’s purpose and living in the present, as life can bring unexpected changes.

Watch Shawn’s video and read his transcript below to:

Discover how a simple gym-related check-up turned into a shocking cancer diagnosis
Explore Shawn’s candid and inspiring journey through testicular cancer treatment.
Find out how Pac-Man visualisations and positive thinking helped him fight back
Learn what it’s really like to get the “all clear” and live with the long-term effects
Read Shawn’s message about purpose, survival, and refusing to wait for life to happen.

Name:
- Shawn H.
Diagnosis:
- Testicular Cancer (Seminoma and Non-Seminoma)
Staging:
- Stage 3C
Age at Diagnosis:
- 31
Symptoms:
- Discomfort in testicular area
Treatment:
- Surgery (orchiectomy)
- 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.

Transcript of Shawn’s Interview

My name is Shawn
I thought my symptoms were from excessive exercise
The day of surgery
What happened after surgery
My testicular cancer treatment plan
The side effects I experienced
How I managed my mental health
The day I got clear scans
Why I share my testicular cancer story
What I want others to know

My name is Shawn

I was diagnosed with testicular cancer a week after reading Lance Armstrong’s book. I found out I had non-seminoma and seminoma, both forms of testicular cancer, which was really interesting.

I thought my symptoms were from excessive exercise

When you exercise, a lot of times there’s a thing called a varicocele or a hydrocele, where maybe you had some impact on the testicle area from working out. So the doctor went, “Oh, you’re fine. It’s probably something you did. We’ll do a routine surgery.”

He did an ultrasound and said, “Okay, you have a varicella, which means there’s not as much blood flow to one side. And then the hydrocele is like water goes in, but fluid doesn’t come out. So we just make a slit. We release it. Don’t worry about it. You’ll be fine.” Then it started getting larger. He goes, “Okay, let’s just take care of this when you have time.” And Christmas time is a little slow for the gym business, so I had it set up for a routine surgery.

The day of surgery

They were going to do the hydrocele and the varicella together, for 30 to 40 minutes. So I went in, and when I was under, the entire staff froze because they saw it was cancer. The doctor had no idea that that’s what it was going to be.

They had to step out of the operating room for a minute and collect themselves. And I didn’t know anything because I was on the surgical table. So afterwards, the doctor wakes me up and he goes, “I’ve got something to tell you.” And he told me the diagnosis.

And I said, “What do we do now?” And he goes, “Did you hear what I said?” I’m like, “Yeah, but I can’t do anything about this. What do we do moving forward?” And he’s like, “Wow. Most people don’t react this way.” I’m like, “What do you want me to do about it? You took care of what you could take care of, right? You did your job. Great. Now let’s go.”

And that’s how I’ve always been. Because I can’t sit there and be like, “Oh my God.” I know why we need to take a course of action. It’s time to go. And at that point, they didn’t realize what stage it was.

What happened after surgery

So, after the staging, I needed to have surgery, an orchiectomy. We did research to figure out the best person to tackle this, because I know one place in Texas and Indiana, two of the highest-ranking places for this. And the thing that’s different with me is that my clients were a lot of doctors. So the head of UNC Hospital and their medical school, the head of urology, and the head of cancer were clients of mine.

I said, “I’m going to this well-regarded doctor, and I’ll bring back the protocol.” The doctor that they had me set up with got really upset with me. And I’m like, “Listen, I’m already under stress. Why do I need this?” So she actually got fired. And then I went up to Indiana and met with another doctor. He goes, “I’m actually going to probably almost put you near death because the treatment is really severe.” I’m like, “Okay.” So they created the protocol and sent me home. A week later, I started chemotherapy.

My testicular cancer treatment plan

I got to UNC hospital. I asked, ”How long is this treatment going to take?” They’re like, “If we run you at 165 milliliters, you’re going to be here for 16, 18 hours. We’re going to jump you up to 650. You’ll get out of here in 6 to 8 hours.”

And so I would go to work and then come in for an infusion. The infusion people didn’t realize it was five days in a row for eight hours. So, pretty much, it’s one of the highest runs of drugs into your system to combat this cancer. So for the first month, I could go to work, and then they’re like, “Listen, you’ve got to come in early because we can’t stay here all night with you.” I was an outpatient. I lived down the street, so I would come in early. And the thing is, being at the state hospital, they had people. This just blows my mind. From prison in a corner, strapped to the table with cuffs. I’m going. What do you think they’re going to do? Run! Like, come on, man, we’re here for treatment. And people would ask me all the time, Why do you have so many doctors? I’m like, they’re my clients.

So all the people from the hospital would come in and show up, and they’re like, “Wow, you don’t look like you have cancer.” I’m like, “What does a cancer patient look like?” They’re like, “Well, how’d you get it?” I’m like, “I don’t know, I didn’t order it on eBay or Amazon. It is what it is.” And the treatment lasted for four months.

I lost 45 pounds during that time. My hair all fell out. This isn’t from chemo, so I knew what my head looked like. So when it started thinning, I shaved it off. And I went for a walk one day, and no one was home. And I’m like, “Who am I? I gotta turn around.” I didn’t think I was going to make it home because it affected my lung capacity so much. And I think that’s the thing, you’re all right one day, and the next day you’re like, “Oof, I need time to relax.” And being younger, I was 31 or 32 at the time when people would come over, it was almost like they felt they were going to catch it. They didn’t know how to react or talk to me, and I remember all the guys and some girls from the gym came over. And I’m sitting there, and they’re all sitting around like, this is awkward as heck.

Like, what am I supposed to say? And they’re all trying to ask weird questions. So I’m talking and talking. And at one point, they all leave. And I just went and got sick in the bathroom because of the stress of trying to look normal and feel normal. And there are certain days that they’d get me on drugs to produce more red blood cells because my white blood cell count was down. And that was ten times worse than the chemotherapy drugs because of how achy it made me feel. And the funny thing was, this kid I was working with, he was ten years old, and he was going through cancer treatment at the time. And I’m like, “Wait a minute, why does he get to take anti-nausea meds?” And there were other things I couldn’t do either. “Don’t take supplements because they’re going to screw up your blood work.” I was just blown away by all the things they told me not to do. I’m glad they’ve completely taken a different approach to treatments.

The side effects I experienced

At first, it was weird. You get really tired, and it hits you all of a sudden, like, after treatment, I’m not doing anything. About 24 hours later, I was fine because I took a lot of different supplements to get the drugs out of my system. So my immune system would build itself up because, again, those drugs only last a certain amount of time. You want to get them out. Drinking a lot of water was helpful. Taking different supplements helped flush it out of my system, because it puts a lot of stress on your kidneys and liver. So the weird thing is, because I didn’t do a port and I don’t know why, they had it in my arm, and they would just tape it up every week, and they’d switch arms. My veins started to harden in my arm, and it hurt so bad. And basically, I don’t have a bicep vein because it just flattened out and disappeared. And the weird thing was, when they would try to get my veins, my veins would move. They’re like, “Yeah, we’d go near you with a needle and your vein would move to get out of the way.” It didn’t want to be injected after a certain amount of time.

Another effect was that I couldn’t sleep. It was weird. And I had a table in front of me, and I would have different kinds of water and juices at different temperatures. Sometimes I would drink, and they would taste all funky and weird. My taste buds changed drastically the entire time. My skin got almost a gray look to it, and I smelled like chemicals. And once in a while, I would get nausea. But they gave me these anti-nausea pills, which actually knocked me out. I didn’t take any pain meds either. I’m just against as many drugs as I need to take.

How I managed my mental health

I did a lot of visualization work. I picked Pac-Man, which would go in and gobble up the cancer, and then I’d go to the bathroom. I would get rid of it. I did a lot of work motivating athletes. The most interesting thing was I was out at a place getting lunch, and this woman walks up to me and she goes, “Hey, I haven’t seen you in a while. What’s been going on?” I go, “Yeah, I’m going through cancer.” She goes, “When you’re done, I want to train with you.” So the motivation to get back to helping people was amazing. This person, after we trained, lost like 30 pounds, went on to win a gold medal in the Olympics in women’s soccer, and she was one of their outstanding players, and that was the motivation that I had that people still needed what I did when I was in chemotherapy. I would be listening to different things, and there would be motivational things on YouTube. Certain sayings I would use. And again, remember, there are points where you’re just like, “Why me?” And you just have to fall apart emotionally and let that out. I remember asking my dad to shave my head. He goes, “Why do you want me to do it?” And the interesting part is that I felt connected to him to do this. And I was married at the time. Soon after, I got divorced because my wife couldn’t deal with it.

She would just go do her own thing, and she would talk to me like nothing was happening or going on. But my mom was always there. And it was comforting to have someone there. And that’s the thing is the ex, being my wife at the time, would go out of town to do her training, and I’d have a buddy stay with me because I needed someone to sit with me. I couldn’t be by myself, because all kinds of crazy thoughts would go through my head. Because I wasn’t sleeping normally. We had animals. I needed help, someone to help me take them out. And again, it’s always, “What did I do to deserve this?” And then you think about the reason cancer shows up. And this is what I explain to people that I work with who’ve gone through cancer. Cancer is you. It’s not something outside of you. So if your body created it, that means there’s an imbalance. And the imbalance can come from internal stress. It can come from external factors, too, like chemicals and all kinds of other things. If you can create it, you can get rid of it. And people are like, “Well, that’s crazy. I’m like, “No, it doesn’t have a mind of its own. You have a say in how you boost your immune system with the hormones that are in it, and in how you feel.”

And look at the situation. This is based on science. This is not just something. No quantum physics energy. The more positive you are, you think about it, the more you surround yourself with positive things, the better food you take in. It gives you an advantage over just not caring.

The day I got clear scans

I was declared in remission four months after I began my treatment. They took a blood test. They’re like, you have no more markers. We did a CT scan. There’s no more cancer there. Your lymph nodes, like they said, were completely clear. You’re good to go. And I’m like, “What does that mean? Because what is remission? That means it’s not active to me. Is it there?” “We don’t know.” And then I’m like, okay, what’s the follow-up? And I think it was every month in the beginning. Then it was every three months, then every six months, then once a year for five years. I’ll tell you what, man, that first time going back is scary as hell because you don’t know. It was the most freaky, uncomfortable place I’ve ever been in my life because I didn’t want to be back there.

And you don’t know when you’re going through this. Is it going to come back? They don’t know. And people, you know, get out of remission all the time. Why? No one knows. I mean, we may have some thoughts on that, but it’s a scary thing, man. Then you go back three months, then you’re fine. Then the one year is the scary one because you get the five years, you’re like, oh, you’re free. I’m like, what does that mean? And then what did the drugs do later on to cause other issues? And the reason I’m bringing that up is I had a heart attack three years ago. I eat clean, and I exercise all the time. Could it have been a cause of the cancer? “We don’t know, but there’s no family history.” I just went to the hospital feeling okay, but this has happened. Had a knee blowout and a race. Had to have a hip replaced like and then most recently with pulmonary embolisms. And there’s no history of any of this. And like, what does a drug do? Short term, it saves your life. Okay. What does it do long term? No one knows. So again, you just hope for the best and lead as healthy a life as possible.

I’ve just watched too many people wait too long to incorporate certain modalities into their treatment, because they’re exceptionally desperate. They would go, “Okay, I’m going to do this treatment schedule.” I’m like, great, what about these other things? “Oh no, my this or this person said, don’t do that.” And they’re afraid of what their family is going to say. If they do something, I’ll quote an alternative. And that’s why I got into the mindset piece, because we all have the same amount of time. We all have the same resources. It’s why one person or group of people is doing something and another isn’t. But when you have the treatment, stop the quote. Conventional treatments aren’t working. You’ve been denied all the testing, or how about a clinical trial? And what level are you at? And then, like, people just have so much hope for a test or a clinical trial that they just. That’s what that’s what’s going to save me. No. You’re going to save yourself.

What I want others to know

We’ve all been put here for a purpose, and if you don’t know what your purpose is, go find it now because you do not know how long you have. People all have this notion that they’re going to grow up and enjoy life and play sports and maybe get married. Maybe have a family, grow old, retire, and enjoy their golden years. Sorry, that’s a fairy tale. There’s a ton of stuff that happens in between there. There’s a ton of amazing things. There are a ton of things that are going to scare the hell out of you, that are going to be disappointing. There’s going to be death. There’s going to be pain. There’s going to be injury, both mental and physical. Live in the present moment. Don’t wait to have the conversation. That’s important. Don’t wait to call that best friend or that loved one and say, “Hey, I just want to know how you’re doing. We should get together.” Because one day you’re going to get a call that goes, “Oh, that person’s not around anymore.” Or they went through this thing and got diagnosed with cancer. And they do these amazing things in life, why weren’t you doing that beforehand? You don’t need to go through a struggle to have a story. Just serve people at your highest level and learn as much as you possibly can about the things you’re interested in, and never stop being a better version of yourself. We’re never going to be perfect, but that’s not life. It’s about enjoying the things you screwed up and sharing those so someone else doesn’t make those mistakes because there’s no right or wrong way of doing it. It’s just your way.

Thank you for sharing your story, Shawn!

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Kandie Refuses to Give Up: A Mother’s Journey Through Stage 3 Endometrial Cancer

Post author By Chris Sanchez
Post date October 14, 2025
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October 14, 2025

Kandie Refuses to Give Up: A Mother’s Journey Through Stage 3 Endometrial Cancer

Can you imagine being a loving mom of three daughters, being given an endometrial cancer diagnosis, almost immediately having a hysterectomy, and starting chemotherapy? Kandie’s stage 3c1 grade 3 endometrial cancer diagnosis in September 2024 left her little time to process everything. Her only symptom was nonstop bleeding for over a year, which led to anemia and multiple transfusions.

Interviewed by: Keshia Rice
Edited by: Chris Sanchez & Jeff Forslund

Despite the physical and emotional challenges of endometrial cancer and her treatments, Kandie’s self-identity and mental health remain central to her healing. She admits feeling less whole after her surgery, but she’s working on self-love by embracing small joys like walking, calm breathing, and lighthearted reality TV. Her motivation comes from her family, especially her daughters and young grandson, who give her purpose and hope.

Transitioning to immunotherapy, Kandie is grateful for a proactive medical team that supports her needs and plans. She encourages other women to advocate for themselves, push for answers, and seek support from online communities. Kandie is focusing on making memories with her loved ones and looks forward to hopefully being NED by March 2025.

Watch Kandie’s video and read her story below. You’ll learn more about:

What she learned from a year of unexplained bleeding
How Kandie balances treatment, family, and self-love
The emotional side of living with endometrial cancer
Why advocating for your health can save your life
Finding hope and gratitude in the middle of endometrial cancer treatment

Name: Kandie D.
Age at Diagnosis:
- 54
Diagnosis:
- Mismatch Repair Deficient (dMMR) Endometrial Cancer (Endometrial Adenocarcinoma)
Staging and Grade:
- Stage 3c1 Grade 3
Symptom:
- Daily vaginal bleeding for over one year
Treatments:
- Surgery: laparoscopic hysterectomy
- Chemotherapy
- Immunotherapy

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

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

Table of Contents

About Me
When I First Noticed That Something was Wrong
My Cancer Was Finally Diagnosed — Along With a Genetic Condition
I Found a Good Medical Team
I Worried for My Family
My Treatment for Endometrial Cancer
Program Highlight: Advanced Endometrial Cancer: Making Informed Treatment Decisions and Accessing Clinical Trials
I Trust Doctors, Though Some Seem to See Women Differently
I’m Finding Strength and Gratitude in Many Ways
My Family is the Source of My Motivation
My Message to Other Women: Push for Answers
Dr. Slomovitz Is Also Hopeful for the Future
I’m Hopeful and Determined to Make Memories With My Family

… hang in there. It can get better.
Kandie D. – Endometrial cancer patient

About Me

My name is Kandie. I was diagnosed in September 2024 with endometrial cancer, stage 3C1, grade 3.

I’m a mom of three daughters. Family and friends know me as someone who always puts others first.

Your life changes automatically right away, once you find out that you have cancer. I’ve been on a roller coaster.

I went from my endometrial cancer diagnosis to having a hysterectomy to undergoing chemotherapy right away. I had no time to prepare. I literally found out what grade I was on November 21 and started chemotherapy on November 25.

When I First Noticed That Something was Wrong

The only real symptom I had was nonstop bleeding — I bled literally every day for more than a year. I thought in July 2023 that I was going to start menopause, because I hadn’t had my period for two months prior. I was all excited. But I started bleeding in July and didn’t stop.

I was angry, very angry. Every doctor I called would tell me, “You need to be treated. You need to stop bleeding. Come in and we’ll give you a PAP smear.” And I would explain to them and the nurses, and then answer the phone and stuff. My bleeding isn’t stopping. That’s the problem.

It got to the point that I became anemic and needed blood transfusions. And I still couldn’t find answers. And when I finally did learn the answer, it wasn’t at the doctor’s office.

My Cancer Was Finally Diagnosed — Along With a Genetic Condition

I didn’t have any of the symptoms that I assumed you would have with cancer. So I was very shocked. But the scariest thing for me was that I had seen my results before I talked to my doctor, and they had stuck them on MyChart before talking to me.

At first, doctors said I had “regular” cancer. But I had genetic testing, and it revealed something that could complicate my treatment plan: deficient mismatch repair or dMMR.

This means that my DNA repair system isn’t working properly. It leads to more cancer cells. My body doesn’t know how to fight cancer cells or kill them.

I Found a Good Medical Team

So I struggled to get diagnosed in the beginning, but later on, I was thankfully able to get a good medical team. This really made things easier.

I didn’t ask them a lot of questions because I was overwhelmed by everything. But they were very proactive about working with me. The nurse coordinator would come in and explain all the medicines I could have. They also had me talk to the navigation person, who, in turn, told me whom I could speak with if I needed help with nutrition. Another doctor asked me if I needed financial assistance and offered to explain my insurance to me.

So they were really good at pre-guessing what I was going to need help with and might ask questions about.

At first, doctors said I had “regular” cancer. But I had genetic testing, and it revealed something that could complicate my treatment plan: deficient mismatch repair or dMMR.
Kandie D. – Endometrial cancer patient

I Worried for My Family

I was scared for my three daughters. I feared that my endometrial cancer was hereditary and that I had passed it on to them. I didn’t want my daughters to have to go through what I was about to go through.

And so before I had my hysterectomy, I asked my daughters to do genetic testing immediately. We were relieved to find out that my cancer wasn’t genetic, and they didn’t have it.

But I had to deal with another worry after that. I began to wonder if I would be here for my grandkids. I just had a new one last July — am I going to see him grow up? I really want to. So I made a goal for myself, that I would be around for him until he’s at least five years old, until he has a concrete memory of me.

My Treatment for Endometrial Cancer

I did six rounds of chemotherapy. I’m now doing immunotherapy.

The physical effects of treatment have been tough, but it’s also taken quite an emotional toll. Society expects you to be a beautiful person and to have babies and raise a family. But since my insides were taken out, I’m no longer a whole person. I guess I no longer feel like a whole woman.

My Endometrial Cancer Story Continues Below

Program Highlight: Advanced Endometrial Cancer: Making Informed Treatment Decisions and Accessing Clinical Trials

Top gynecologic cancer experts say it’s life-changing, maybe life-saving, for people to know more about what’s going on in treatment options, which are growing in endometrial cancer.

Endometrial cancer is the most common gynecologic cancer, and for many people, it comes with more questions than answers. In this honest, expert-led conversation, Dr. Brian Slomovitz, Director of Gynecologic Oncology and Co-Chair of the Cancer Research Committee at Mount Sinai Medical Center in Florida and The Patient Story’s Stephanie Chuang break down the latest in diagnosis, treatment options, and how to have better conversations with your care team.

Learn about early warning signs, key risk factors like obesity and PCOS, and how biomarker testing and clinical trials are changing the standard of care — especially for advanced and recurrent disease.

Topics:

Warning signs and symptoms to watch for, including post-menopausal bleeding
Risk factors that raise your chances, like obesity, PCOS, and Lynch syndrome
How specialists use biomarker testing to personalize care
Treatment options beyond chemotherapy, including immunotherapy and hormone therapy
What clinical trials are, who they’re for, and how to access them — even remotely
Why it’s okay (and important) to get a second or third opinion

Dr. Slomovitz: Forget about getting rid of chemotherapy. Imagine if we got rid of surgery as well. How great would that be for a patient?

The Importance of Awareness and Early Detection

Dr. Slomovitz: If there are any signs of abnormal bleeding, we really want to educate our patients to go see their healthcare providers. Oftentimes, it could be nothing. It could be a polyp. It could be a premenopausal woman’s abnormal period. But some cancers and precancers can be diagnosed.

Understanding the Risks and Causes

Dr. Slomovitz: The best way to cure cancer is to prevent cancer… There’s a large subgroup of patients who have the typical standard endometrial cancer or something called endometrioid endometrial cancer. This is really driven by obesity. Obese cells, fat cells in the body, produce estrogen. So the heavier a person is, the more likely they are to have higher estrogen levels. And it’s the estrogen that feeds the lining of the uterus, the endometrium, which could transform it into a cancer or pre-cancer.

More women now die from endometrial cancer than from ovarian cancer. We used to think of ovarian cancer as the silent killer.

The standard of care at first is a hysterectomy. After a hysterectomy, we find about 70 to 75%, maybe 80% of patients are diagnosed with stage 1 disease. It’s those other patients that we’re more worried about, the patients with lymph node involvement, or spread to the cervix, or spread to other parts of the abdomen. Those are the advanced-stage patients, and they require systemic therapies. For some of those patients, the recurrence rates could be quite high. Patients with advanced recurrent disease recurrence rates could be 60, 70%.

Some of the high-risk histologies, such as the p53-abnormal group, are the ones that are set up for recurrent disease as well. And we need to come up with more systemic treatment options.

Why Specialist Care Matters

Dr. Slomovitz: We’re not going to rest until we get to 100% cure rates. And I think it’s important to talk to your doctor about what clinical trial options are there, what clinical research is going on. It’s important always to get the right or correct opinion. That means it’s okay to get second or even sometimes third opinions.

A Revolution in Treatment

Dr. Slomovitz: One of my career goals is to get rid of chemotherapy. The response rates of chemotherapy, even in the first line of about 50- 52%, the duration of response or the progression-free survival is only about 14%. Those numbers aren’t good enough.

Considering Clinical Trials

Dr. Slomovitz: It’s OK to get standard of care. I don’t think clinical trials are for all patients, but I think some patients are super motivated and want to improve their treatment options.

For the rest of this interview, watch our program replay ON DEMAND.

Learn what’s changing, how it impacts treatment decisions, and what it all means for patients today.

Back to My Endometrial Cancer Story

I Trust Doctors, Though Some Seem to See Women Differently

If treatment can prolong my life, I don’t have concerns. I trust the doctors.

I have to say, though, that some doctors look at us differently. Women sometimes are seen as exaggerating or not knowing what we’re talking about, or being unsure. In my opinion, most doctors don’t take us as seriously as they should.

I’m Finding Strength and Gratitude in Many Ways

I’m working to find strength, be grateful, and maintain my mental health.

I do a lot of walking and calm breathing. I do fun things like watching reality TV. Watching things that I know are staged helps me get out of my head and out of that everyday loop. It helps me be grateful for what I do have.

My Family is the Source of My Motivation

When I have down moments, my family members are the ones who motivate me the most. My immediate family, my husband, my daughters, my grandma, my son-in-law, and my grandsons. We’ll tease each other, and it breaks the ice if I’m having a hard time. They know they can hug me.

I’m working to find strength, be grateful, and maintain my mental health.
Kandie D. – Endometrial cancer patient

My Message to Other Women: Push for Answers

If you know something’s off, if you’ve been bleeding for way too long, push for the gynecologist to look at you. Push hard. Tell them no if you need to. You’re not taking no for an answer. You’re coming in.

If you’re newly diagnosed with endometrial cancer, hang in there. It can get better. Join the groups that are on social media. The women there will always help you get through it.

Dr. Slomovitz Is Also Hopeful for the Future

He believes newer treatment options will give all of his patients longer and fuller lives.

The future’s bright. We’re becoming better and better with our treatment options. It used to be that women with endometrial cancer would get one or two lines of therapy, and then the disease was so aggressive, they’d succumb to their disease. Now patients are getting three, four, or even five lines. And as we move forward, we’ll get more and more lines of therapy with the latest and greatest therapies.
Dr. Brian Slomovitz – Director, Gynecologic Oncology;
Co-chair, Cancer Research Committee, Mount Sinai Medical Center

I’m Hopeful and Determined to Make Memories With My Family

I’m hoping to be NED in March 2025 so that I can be done in April.

And after that, I’m excited to hopefully be able to take vacations.

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

Thank you for sharing your story, Kandie!

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The Nickel-Sized “Bruise” That Changed My Life: Sophie’s Stage 2 Ewing Sarcoma Story

Post author By Chris Sanchez
Post date October 12, 2025
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October 12, 2025

The Nickel-Sized “Bruise” That Changed My Life: Sophie’s Stage 2 Ewing Sarcoma Story

Sophie’s story begins with a strange, round robin’s-egg–blue spot on her upper arm that didn’t hurt, fade, or otherwise behave like a normal bruise. Pushing for answers led to a diagnosis of soft-tissue Ewing sarcoma, a rare kind of cancer, at age 31. Initially, a doctor thought it was nothing serious. But Sophie trusted her gut and insisted on further checks. Her persistence led to an ultrasound, a surgery, and eventually the devastating phone call: it was cancer. She had never even heard of Ewing sarcoma before that day.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Sophie’s experience emphasizes the importance of self-advocacy, particularly for adolescents and young adults. She quickly learned that waiting months to be rechecked wasn’t an option. Pushing for answers, she navigated multiple appointments, imaging scans, and pathology reviews until she received a clear diagnosis. Along the way, she also discovered the emotional toll of rare cancers like Ewing sarcoma, namely fear, uncertainty, isolation, and how it can feel when life halts while friends and peers continue moving forward with weddings, new jobs, and other milestones.

Sophie’s treatment involved 14 cycles of chemotherapy over 10 months, split between inpatient and outpatient sessions, plus a second surgery to secure clean margins after the first removal proved insufficient. Uncomfortable side effects like fatigue, nausea, food aversions, and hair loss became part of her new reality. But she found ways to manage the cycles and focus on what she could control. She realized that mental health was as important as physical health, and leaned on family and close friends who stayed present through the hardest days.

She now has no evidence of disease (NED), and continues regular scans and bloodwork to monitor her health. Sophie hopes her story encourages others to listen to their bodies, speak up if something doesn’t feel right, and seek specialists for rare cancers like Ewing sarcoma. She also wants to shine a light on the psychological impact of cancer in young adults: how it reshapes expectations, identity, and hope, and stresses that research into rare cancers must continue to grow.

Watch Sophie’s video and check out the transcript of her interview. You’ll find out more about:

The little round blue “bruise” that turned out to be something far more serious
How one young woman pushed for answers when doctors said to wait six months
How Sophie’s story evolved from a casual doctor’s visit to a life-changing cancer diagnosis in just weeks
The emotional toll of facing mortality at 31 while friends moved forward with life milestones
Hard-won lessons on self-advocacy, resilience, and finding strength in the face of Ewing sarcoma

Name: Sophie F.
Diagnosis:
- Ewing Sarcoma
Age at Diagnosis:
- 31
Staging:
- Stage 2
Symptom:
- Appearance of a nickel-sized, blue, and solid but soft and spongy mark on upper left arm
Treatments:
- Surgeries: cyst excision surgery and wide excision surgery
- 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.

Transcript of Sophie’s Interview

My name is Sophie
I only had one symptom
I finally saw my primary care doctor
The day of surgery
How I reacted to my diagnosis
My treatment plan
The side effects I experienced
I currently have no evidence of disease
The hardest part of my diagnosis
What I want others to know

My name is Sophie

I was diagnosed with Ewing sarcoma, soft tissue, in 2022.

I only had one symptom

One day back in fall 2021, I was looking in the mirror and caught a glimpse of the side of my left upper arm, and it looked like there was a bruise there. But it was weird-looking, just slightly different. It was not faded and didn’t have that kind of blue-yellow color. It was pure blue, almost like robin’s-egg blue. And it was perfectly symmetrical, perfectly round, and the size of a nickel. It wasn’t sore to the touch, it didn’t hurt at all. It wasn’t raised. When I touched it, I could move it back and forth under the skin. It was moving as a solid, if that makes sense.

Within a week or two of noticing this strange bruise, I went to the doctor, because a bruise typically goes away pretty quickly and also hurts. I knock into stuff at the time, but this was significant enough that I should have remembered what I did that caused it.

The doctor I saw, who wasn’t my PCP but who was in the practice, barely examined it. I don’t even know if she touched it. She looked at it and basically said, “It looks fine, you’re young and healthy, and you have no other symptoms, so maybe it is a bruise. Or a hematoma, or a fatty deposit. But I’m not really worried about it. If in six months, it’s still there, you can come back.”

So I went home. But it didn’t sit right with me that she barely checked it out. More importantly, it didn’t make sense with what I was seeing and feeling. So, within two weeks after that visit, I called the doctor’s office back and said, “Look, I need to get back in sooner than six months. I’m not comfortable with someone not taking a closer look at this.” But I was told that there were no slots available for six months.

I finally saw my primary care doctor

She thought it was weird that the mark hadn’t gone away already. She suggested getting an ultrasound to get more information. So I went to get one. That took a couple of weeks.

The ultrasound results were those of an abnormal cyst. So it looked like a cyst, like a fluid-filled sac. But what was abnormal about it was that it had blood flow, which cysts usually don’t have. So I asked her what that meant, and she said kind of could mean a variety of things. She said, “I’m still not concerned, but we have a couple of options moving forward. We can watch it for a few months, you can do an MRI to get more information, or you can just have surgery to get it removed.” At this point, it had been four months since I first noticed it. So I went, “I just want surgery.”

I didn’t know anything about the steps you’re supposed to take if it’s something suspicious, because I had not dealt with that before. And she never said, “I think this might be cancer.”

The day of surgery

Finally, in February 2022, I went and got it removed by a regular surgeon. She wasn’t worried about it after the surgery. She called and said, “It went well. It was mostly just blood in the cyst. And it didn’t look weird. I’m not concerned about it or anything, but I’m sending it to pathology as part of the process.” I thought it was no big deal since I felt fine and it was just a small incision.

But a week later, she called again and said, “I’m really sorry. I was wrong. It’s actually cancer. We don’t know what type of cancer it is yet. We’ve sent it to pathology here in Syracuse. And they’re not coming up with a definitive diagnosis. It could be anything from blood cancer to skin cancer to Ewing sarcoma, which is our best guess.” I’d never heard of Ewing sarcoma before. She added, “Don’t look that up, don’t freak yourself out. We’re sending it to Memorial Sloan Kettering in New York City, and they’ll run their pathology.”

But knowing that it was cancer, I got set up with an oncologist and a surgeon and everything. It was three weeks before I got my official diagnosis on March 1, 2022, and they turned out to be correct. It was Ewing sarcoma.

How I reacted to my diagnosis

I was shocked, for sure. I was terrified and distraught. I think that phone call where she told me I had cancer was the most scared I’ve been throughout the entire experience. Not only was I hearing those words when I just turned 31, but they didn’t even know what it was specifically.

I was with my friend when I got the phone call. It was on a regular weekday afternoon. I immediately called my parents, and they came over, and my friend left. It traumatized her, too, understandably. I cried for a good while. More than anything, I was just terrified not just of cancer but because I was imagining all the things that it could be and what that could mean for me. There wasn’t any information yet about how aggressive it was, if it was localized, or even what category it fell under. So, yeah, the initial reaction wasn’t great.

My treatment plan

So the treatment plan was typical for Ewing’s sarcoma. It was very specific and targeted. It covered five chemotherapy drugs over the course of eight months to a year, depending on how the patient’s body reacts.

So for me, it was 14 cycles total, seven of which were inpatient and seven outpatient. The outpatient was typical chemo, where you go to an infusion room and you get an IV with chemo along with other people. The inpatient ones required me to stay at the hospital for a week at a time and get two or three drugs a day for five days in a row. I would have two days of the outpatient chemo, and then, two weeks afterward, five days of the inpatient chemo, and then two weeks later, and moving forward, that had to be spread out a little bit more because my body started taking longer to recover. In total, it ended up taking me about ten months.

Also, with Ewing’s, if it’s operable, you do surgery. Mine was, because it was in the soft tissue. Typically, this is done about halfway through, after, say, the first six cycles of chemo and before the remaining cycles. For me, when I had the initial cyst removal, they didn’t get clean margins because they weren’t operating as if it were cancer, just a cyst, so they didn’t take a lot of the area around the cyst. I needed to have that second surgery, wide excision surgery, in the midst of my chemo. And that was basically to take an extra inch around where the original tumor had been to get clean margins.

The side effects I experienced

The chemo was very challenging because I had a whole host of side effects. The main one was extreme fatigue. I would be insanely exhausted after chemo. After outpatient chemo, I would usually have two or three days when I would crash and then just be down for five or six days. When I was in inpatient chemo, it would be five days in a row. Maybe the first or second day wouldn’t be so bad. But by the third day, I would be spent. And that would last for up to a week after I got home. I would sleep about 12 to 14 hours a day and still be exhausted. I would get up to try to force some food down and then go back to sleep.

Other side effects I faced were nausea and lack of appetite. I only actually vomited once during my entire treatment, but that said, I still did get severely nauseated. I also had zero appetite and really did not want to eat. I actually had a food aversion; it would really gross me out to see food. And I also lost all my hair on my entire body. I usually don’t think about that side effect because it was expected. I knew it was going to happen. Still, though, it was not an easy thing to go through. I had other side effects too, like mouth sores once in a while, and some gland pain.

Once I spaced out my treatments, which took place after the third or fourth round, a lot of these side effects actually eased up. And I never needed to go back to the ER. I learned how to manage the various cycles and their side effects. It got a little bit easier for me after that.

I currently have no evidence of disease

I was told that for patients who have Ewing’s and maybe all other sarcomas, they don’t use the phrases “in remission” or “cancer-free.” They use NED, “no evidence of disease” or “no evidence of active disease.” I was actually considered NED after my second surgery, about six months before the end of my treatment, because the evidence of disease was the positive margins I had after the initial cyst removal surgery. So once they got clean margins, it was technically dead. My NED anniversary is in July.

But I still had to do the rest of the chemo even though I was declared NED. That’s the protocol for Ewing’s sarcoma. And every three months for the first two years afterward, I would get scans, like a scan of my arm where I had the cancer and a scan of my chest, too, because if the cancer comes back or metastasizes, those are the most likely places it will go — my arm where the original one showed up, or my lungs. So, scans every three months aside from bloodwork to see if my body is recovering the way it’s expected to or if there’s anything new and weird that they need to investigate.

The hardest part of my diagnosis

There are so many things that were hard, some of which continue to be hard. I don’t want to downplay how tough chemo was, for example. I mean, it was like a living hell a lot of the time. But even harder than that was the psychological and emotional toll that cancer took and continues to take.

Any time you’re told that you have cancer, it’s absolutely awful and life-changing, and not the way you want it to be. But I think finding out and being told at a relatively young age was just that much harder. I was in the prime of my life. People around me were getting engaged, getting married, having kids, buying houses. And I was stuck in time. It felt like everyone else was advancing, while I was standing still — or fighting for my life — and finding out whether or not I was going to die. It really messed with my perception of my own life. What I thought my life was going to be, what I expected for myself, my assumptions, like I had assumed I would be healthy until I was old.

My mom is actually a breast cancer survivor; ten years this month. She was 60 when she was diagnosed. So I did have experience with these things, but she was 60 and I was half her age when mine was diagnosed. I never saw it coming. That was really challenging. That was the hardest part, when I had to face my own mortality at a young age, when my peers didn’t need to. It was just a given for them, like they were healthy and would live long lives. And that’s how it used to be for me, too, but it was taken away all of a sudden. That was not easy at all.

In terms of who I am now versus who I used to be, it’s sort of the same. I used to be innocent about my expectations for my life and my hopes and dreams, and how I wanted my life to look. It’s different now.

What I want others to know

I have one piece of advice, but it has two parts.

One would be a logistical answer: advocate for yourself. Don’t take no for an answer if you think something is weird or wrong, even if you have health anxiety, even if you’re anxious to begin with. Push away, because you never know, and it’s better to be safe than sorry. It’s better to have something looked at and then find out it’s nothing rather than having someone brush you off or not have it checked at all and then find out it’s something serious and even potentially at a later stage. Push for answers, push for yourself, take care of yourself. Make sure that people are listening to you. Get a second opinion, especially if you are diagnosed with cancer, ideally somewhere where there’s a specialist. There was no sarcoma specialist at my local hospital, and I had to go for a second opinion at MSK to get the peace of mind that I was getting the right treatment.

The second is not logistical: cancer is tough, but you’re tougher. There are a lot of platitudes like that, but you really are stronger than you think you are. I used to be really squeamish and scared of blood and needles and doctors’ offices. And one of my first thoughts was, “How am I going to get through this? I don’t thrive in this environment. I’m scared of it. I hate being sick. What if I can’t do this?” And the answer is, you just have to. And so you will. You can do many more things than you think you’re capable of, simply because that’s the situation you find yourself in. And it’s what’s in front of you. Just take it one step and one day at a time. Look at what you need to do to move from one place to another. And eventually you’ll be in it, and hopefully you’ll be done with treatment and living a cancer-free life. Make sure you lean on your supports. Find the people in your life who are going to stay and who are going to help you. They’ll help you get through anything.

Thank you for sharing your story, Sophie!

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AJ Shows the World the True Face of Stage 4B Cervical Cancer

Post author By Chris Sanchez
Post date October 11, 2025
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October 11, 2025

AJ Shows the World the True Face of Stage 4B Cervical Cancer

AJ shares her story about living with stage 4B cervical cancer. Her sincerity and the drive behind her mission shine through: to encourage other women to prioritize their health and get a Pap smear.

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

She openly admits that, like many women, she explained away her early symptoms — bloating, cramping, pain, and bleeding during intimacy — because she was busy and assumed they were signs of something else. It wasn’t until the symptoms became impossible to ignore that AJ discovered that she had cervical cancer, which, moreover, had already spread extensively. Reflecting on this, she gently but firmly urges other women not to ignore or dismiss their own warning signs.

AJ also zeroes in on the emotional side of living with cancer. She notes that we often hide the hardest parts from our loved ones. She wants to be the face of cervical cancer so that others can understand what their loved ones might be silently enduring.

Transitioning between the raw realities of treatment and the deep love for her family, AJ talks openly about her long chemotherapy days, side effects such as nausea and weight loss, and the twice-daily injections that leave her stomach covered in bruises. But she also highlights small positives with a touch of humor, like how showers now take only three minutes since she shaved her head on her own terms.

Community support has been a lifeline for AJ. Friends and campground neighbors have brought her meals, helped with her dog, and offered other gestures big and small that remind her that she isn’t alone. Her faith has also become an anchor, giving her courage to keep moving forward even on the hardest nights.

AJ’s message is clear and empowering: listen to your body, get your Pap smear, and don’t hide your reality to make others more comfortable. By sharing her experience, she’s offering both a warning and a warm invitation to women everywhere: take care of yourself, advocate for yourself, and trust that speaking openly about cervical cancer can create understanding and change.

Watch AJ’s video and scroll through the transcript of her interview below. You will:

Discover why she believes that showing the real face of cervical cancer can change lives
Learn about the quiet emotional struggles families rarely see, and why she shares them
Find out how one RV-loving grandmother balances chemo, courage, and community support
Learn AJ’s heartfelt advice on the Pap smear that could save your life
Discover the small yet empowering ways she keeps control through her cervical cancer story

Name: AJ H.
Diagnosis:
- Cervical Cancer
Staging:
- Stage 4B
Symptoms:
- Pain in ovaries
- Discomfort and bleeding during intercourse
- Consistent bloating in abdomen
- Cramping
- Severe back pain
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.

Transcript of AJ’s Interview

My name is AJ
How I knew something was “off”
How I found my care team
My treatment plan
My side effects from chemo
How I cope living alone
My support system
I look at life differently now
What I want others to know

My name is AJ

I’m from Arizona. I was diagnosed with stage 4B cervical cancer on July 16th, 2025.

I am a full-time RVer. My travels have been limited recently due to my diagnosis, but for the past couple of years, I’ve been traveling through the United States, and I’ve done some incredible things. I’m an avid reader, a bibliophile, if you will. Absolutely love books, the texture, the smell. Horses are a big passion of mine and my family.

I had 12 horses. When I actually did what I had done, I had a ranch, I created a non-profit, and I would rescue the horses from slaughter, rehab them, train them, and then military and first responders with PTSD or injuries could come out for equine therapy. So when I went full-time RVing, I gave my horses to some people who were frequent visitors for equine therapy so they could continue what was helping them so much. Though it was very costly, it was impactful.

And I’m a good cook. I can make anybody fat.

I have seven grandbabies.

How I knew something was “off”

As females often do, I dismissed many of my symptoms. I blamed them on other things. Even though I’m in menopause, my ovaries hurt, I’m bloated, and I’m cramping. All of those were symptoms that I wasn’t paying attention to, pain and bleeding during intercourse.

I had had a series of three surgeries. I was kicked in the abdomen by a horse, my fault, not hers. And for the past almost three years, I would contact the surgeon and say, “I’m bleeding during intercourse.” And it went from just spotting to a stage where it would be all the way down to my knees and dripping off my thighs. I ended up thinking I had kidney stones. So I went to the ER, and the first doctor immediately told me, “This is stage three cancer.” And I thought, “Well, how do you know, you didn’t even do a biopsy?” And he referred me to another physician at GYN, and she was absolutely incredible. And she immediately, as soon as she put the spectrum, she said, “This is stage three, probably stage four cancer.”

I was referred to a GYN oncologist, and she too had the same comment. She said she would almost bet her career that it was stage four cancer. So I had the PET scans, and they confirmed that it was stage four B cervical cancer that had metastasized to my cervix, abdominal lymph nodes, the mediastinum, the entire mammary chain, the lymph nodes in the neck, the trachea, and the voice box.

To the point where I noticed them and explained them away for three years, there were things along the way, but I explained them away like all women do, and that’s part of what I want to tell women is don’t explain away your symptoms because that’s what they are.

The doctor had said that it was stage three, possibly stage four. Then she sent me to a GYN oncologist, and she too said the same thing. And then it was confirmed with the PET scan.

I was deaf. It’s not something you want to hear. And my first thought was about my children and my grandchildren and leaving them behind. My grandbabies are so young. My mother passed away when I was 11, and I have minimal memories of her.

I wanted to fight for my kids and grandkids, so we could have more time together and create more memories. It’s all been so overwhelming.

How I found my care team

Each one of my children is in a different place throughout the United States, and each one of them said, “You need to come here.” I’m in a very small town, and they were worried about the medical care that I would receive. And it’s actually the complete opposite. Here, I have received incredible treatment. I’m treated like a person and not a patient, a case, or a chart. They remember my story when I walk in. They remember my children’s names. They’ve just been so incredible, and I am forever grateful.

My treatment plan

There wasn’t a lot of choice. I have one way of treating this. My GYN oncologist took my case to a board of 12 specialty oncologists, and they collectively created the most aggressive chemotherapy plan.

It is very daunting because it is such a harsh plan. But even after the first treatment, I had a CT scan, and in one area, they saw a 60% shrinkage. And in another area, they saw a 54 % shrinkage after just one treatment.

I have chemotherapy every three weeks. I go in the day before to have my blood work done to see that I am healthy enough to have the chemotherapy treatment. My chemotherapy treatment is anywhere from eight to 10 hours. It goes through my chemo port. And the next day I go in for more hydration and or anti-nausea medication. And then I get this injection into my belly, and it goes into my bone marrow to increase the white blood cells to help my body fight the cancer. But a side effect of it is that it makes your bone marrow swell inside your bones. And because your bones can’t accommodate that swelling, it’s incredibly painful. It feels like every single bone in my body is breaking. And then I’m down for about four or five days. My body shakes uncontrollably.

Thankfully, knock on wood, I have not thrown up from the chemotherapy, not to dismiss that I do feel very nauseous. And for those four or five days, my only nourishment is protein drinks or meal replacement drinks. I can’t eat too much, and every doctor visit that I go into, it’s not a matter of if I’ve lost weight, it’s a matter of how much weight I’ve lost. And it’s typically about two pounds every time I go in. And I had 11 doctor’s appointments this week in four days. So that’s a lot of weight that I’ve lost. I was a sugar fiend. I can’t say no to dessert. I’ve probably lost close to 20-25 pounds so far.

They initially set the plan for 35 rounds of chemotherapy. We’re going to do another PET scan after the sixth treatment and see if my body has responded well enough. I do have a chemotherapy appointment next Tuesday, and we’re going to do a CT scan a couple of days later just to check the progress.

Hopefully, my cervix shrinks enough. The cancer on my cervix is so great that my cervix and the cancer are almost coming out of me. You can feel it, you can see it if you were to look in there. It’s not something you have to search for. It’s that advanced. And it causes problems, like if my bladder gets full, it presses on my cervix, which causes pain. If we do have enough shrinkage, then hopefully we can do a complete hysterectomy.

My side effects from chemo

I’m battling some blood clot issues right now. So I have to give myself injections into my belly twice a day. And then they also put me on Coumadin. There’s a measure of safety, it’s from one to four, and they want you between two and three. When we first started, I was at 1.0. I was checked today, and I’m at 1.1, so it’s not coming up like it should.

I also had an echocardiogram today. I do have some fluid around my heart caused by the chemotherapy drugs. Thankfully, it’s only one centimeter of fluid. So, there is no need to inject a needle into me to drain that fluid at this point. But that is one of the side effects of chemotherapy.

Two days after chemo, I’m in the ER with some kind of problem from it. The weight loss, and being so lethargic. I’m so weak from the shot that I can’t walk without support. have to hold on to something as I walk, which is a greater fear now that I’m on so many blood-thinning medications. It just steals everything from you. It stole my hair, but I did decide to cut it when it started to fall out. That was the only thing I had control over. I cut my long, beautiful blonde hair after my second treatment. And about five days after that, I ran my fingers through my hair, and it was so much hair. So. I went to a hair salon, and these ladies were so encouraging. They stood right beside me, one held my hand, and she was just giving me so much empowerment. She was telling me that I’m Guy Jane. Just so much power that they gave me.

They never charged me for one haircut. When they shaved my head, they did leave a little buzz, and then that started getting really patchy, and I didn’t want to look like a guy with the ring around my head. And the hairstylist came to my home and shaved that hair off. She didn’t have to do that. That was completely unexpected, and it was a personal moment. Your hair is not only a part of your feminine identity. It’s part of your individualism. And my hair has always been part of my security blanket. And oftentimes I’ll go to twirl my hair or flip it out of my way, and it’s not there.

But I will say there are some benefits. My shower now takes three minutes unless I turn around like a rotisserie chicken in there. I don’t have to blow-dry it. I don’t have to worry about gray hair. I can roll the windows down in my vehicle. There’s a lot of positive. There’s positive in everything. You just have to look.

Cancer steals everything from me, but I’m not allowing it to steal my dignity or my battle. This is my battle, and I will win it.

How I cope living alone

I’m completely watching over myself. But my dog, as crazy as it sounds, has indicated things to me.

One evening, he just sat bolt right up out of bed, unexpectedly, came over and sat on my belly. And I checked my heart rate, and it had jumped from the 80s up to 136. And I had to go to the ER to have that checked, and that’s the fluid around my heart now.

But it helps when caring for myself, thankfully, that my RV is not too large. It’s been a challenge. It’s scary at times, and there are days when I don’t have the physical ability to get up out of bed due to the chemotherapy. And I wish that I had somebody here to encourage me and help me.

My support system

I’m currently in Cody, Wyoming.I am leaving this area in a week after I recover from my next chemotherapy appointment, and I will be closer to my family. It’s kind of like my triangle of love. Each one of them will be about three hours from me, so they can help me, and I’ll be surrounded by a lot of my friends as well.

The camp that I’m at has been completely amazing, and I couldn’t have done this last round of chemotherapy without them. They set up a meal delivery system. So every night, somebody brings me a home-cooked meal. With the gluten, I can’t have vitamin K, so no green leafy vegetables, anything green. And they’ve been very mindful of that. They come and walk my dog for me. They bring me bags of ice with their neuropathy in my hands and feet, the nerves in my hands and feet that were once silent after chemo, they’re blazing, and they go numb, and they tingle, and they hurt, and they throb, and it’s the oddest sensation because you don’t know which foot is in front of the other. So I have to be very careful and I have to watch my feet to make sure I am picking them up and moving them.

I look at life differently now

When you have devastating medical diseases, it makes you question your mortality.

Something happened the other night. I still don’t know if I believe it myself. I was standing at the sink, and I was giving myself an injection. And as I pulled the needle out, I just broke down. I was crying. I was shaking. I didn’t know if I would be able to do this anymore. My stomach is just covered in bruises from these twice-a-day injections. And I prayed. And I asked God for strength and courage. And in that moment, I felt this warm embrace from behind me, an instant calm. And this peace just washed over me. The tears that were escaping immediately went away. It was the most incredible thing, and I’m not sure if I fully have the vocabulary to describe it. Or if it was my mind saying, “You’re going to be okay, or if it was a higher being saying you’re going to be okay. But since that time, I can give myself the injections with courage and strength.

Before, it would be a good minute to stick the needle into my stomach. And now I can just pop it right in and do the medication.

It was the most incredible feeling. There was peace and love and warmth and strength and courage in an instant. It was… I can’t fully describe it. There are no words to fully describe it. I felt the arms wrap around me from behind. And it was so warm and comforting. It was magical, wonderful. I can say is it was magical.

What I want others to know

Don’t explain away your symptoms or your pains. It could not be your period. It could not be cramps. Think of all these symptoms. Get a pap smear. I didn’t do it. I was so busy with my life. I owned 12 companies. I had four children. I can get it later. If I had had a pap smear regularly, as recommended, this could have been detected at an earlier stage, one, two, or three. And now I’m battling for my life. I want people to know that you don’t have to hide your disease to make other people more comfortable. I chose not to wear a headscarf. I chose not to wear a wig. And I noticed that I’m big on eye contact, and when people walk by, I’ll look at them, and they’ll divert their eyes. They’re not used to seeing this, and part of my journey is showing the real side of battling cancer. It’s not glamorous. It’s tough. It’s a fight, and we as patients or cancer victims, I guess, the word would be. We try to shelter our family from that pain, from that misery, and we don’t explain our fears. I don’t sleep at night because I’m afraid of dying during my sleep. These are some of the things that I want to share with the public: Cancer is real. Don’t hide it. Tell people how you’re feeling.

My chemotherapy plan is very aggressive, and the medications that I’m on are not covered by my insurance. Each is almost $45,000 just for the drugs alone. I’ve tried to get funding and financial assistance, but I have government healthcare from the military. I can’t get that financial assistance. Even though they don’t pay the bills for it, I’m still responsible for $45,000 in medication every three weeks. So be your own best advocate. Search out everything that you can. Look for programs that can help you. Look for financial assistance. Call the companies that produce the drugs. They might have assistance through them, but even though you think your insurance is great, it doesn’t cover many things, which is unfortunate.

Thank you for sharing your story, AJ!

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Nikoo Navigates Stage 4 Lobular Breast Cancer with Targeted Therapy

Post author By Chris Sanchez
Post date October 10, 2025
No Comments on Nikoo Navigates Stage 4 Lobular Breast Cancer with Targeted Therapy

October 10, 2025

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.

Transcript of Nikoo’s Interview

My name is Nikoo
Navigating first signs and missed diagnoses
Emotional reactions and family support
Genetic testing and monitoring experience
Years between diagnoses and persistent intuition
Recurrence: navigating symptoms and second opinions
Receiving the metastatic diagnosis
Advocating for lobular breast cancer awareness
Building a new care team and finding specialists
Treatment decisions: CDK4 inhibitors and clinical trials
Research, mutations, and targeted therapies
Challenges of living with cancer: financial, physical, social
Sources of support: my family and the metastatic cancer community
Redefining survivorship in stage 4 cancer patients
Hopes for the future of lobular breast cancer
Advice for cancer patients: listen to your body
The importance of sharing patient stories

My name is Nikoo

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.

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.

When I was diagnosed, I searched for other people’s stories — those stories gave me hope. Sharing experiences is vital.

Thank you for sharing your story, Nikoo!

Inspired by Nikoo's story?

Share your story, too!

Starr’s Stage 4 Colon Cancer Story Highlights the Importance of Second Opinions

Post author By Chris Sanchez
Post date October 9, 2025
1 Comment on Starr’s Stage 4 Colon Cancer Story Highlights the Importance of Second Opinions

October 9, 2025

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
Living fully after colon cancer remission

Name: Starr S.
Diagnosis:
- Colon Cancer
Age at Diagnosis:
- 44
Staging:
- Stage 4
Symptom:
- Abdominal pain
Treatments:
- Chemotherapy
- Surgeries: colectomy, hepatectomy, lymphadenectomy
- 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.

Transcript of Starr’s Interview

My name is Starr
When I first started feeling “off”
The moment everything changed
What side effects I experienced
Finding the right care team
I was able to get surgery
The value of multiple opinions
How my diagnosis impacted my kids
The hardest part of my diagnosis
How my identity has shifted after my diagnosis
Reaching no evidence of disease
My support system
What I want others to know

My name is Starr

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.

Thank you for sharing your story, Starr!

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Cancer is Not Just an Older Person’s Disease: Kalei’s Stage 4 Rectal Cancer Story

Post author By Chris Sanchez
Post date October 9, 2025
No Comments on Cancer is Not Just an Older Person’s Disease: Kalei’s Stage 4 Rectal Cancer Story

October 9, 2025

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.

Transcript of Kalei’s Interview

Hi, I'm Kalei
My symptoms started in early 2024
While waiting to get answers, I took matters into my own hands
My care team had a plan, but it was still a shock
The treatment worked, and I showed no evidence of disease until a suspicious spot popped up…
After advocating for myself, I was referred to a pulmonologist, a doctor who specializes in the lungs and entire respiratory system
My husband and I processed the devastating news with our family and friends
At this point, I knew it was time to tell my two daughters
I had also gotten a new oncologist, and her team knew how they wanted to handle the cancer spreading
Even after everything I’ve been through, I’ve been able to find peace in my diagnosis
After I had two lung surgeries, my husband and I are now focusing on moving forward with everyday life
I want people to know: Always advocate for yourself and stay strong

Hi, I’m Kalei

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.

Thank you for sharing your story, Kalei!

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From Bladder Cancer Caregiver to Advocate: A Story of Love and Support

Post author By Chris Sanchez
Post date October 7, 2025
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October 7, 2025

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.

Table of Contents

About Me
How Laurent Found Out He Had Bladder Cancer
Everything Changed When We Heard the Word “Cancer”
We Found Treatment Decision-Making Complicated and Challenging
It Was Critical to Get More Than One Opinion
To Build Our Confidence, We Searched for Support
We Started Our Own Bladder Cancer Group
CANVES is Our Passion Project as a Patient and a Bladder Cancer Caregiver Advocate
Part of Our Mission is to Break the Stigma Around Bladder Cancer
I Want People to Know: You Are Not Alone

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.

Thank you for sharing your story, David!

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How Terry Rediscovered Himself After Rare Sarcoma (Right Maxillary Fibrosarcoma)

Post author By Chris Sanchez
Post date October 7, 2025
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October 7, 2025

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.

Transcript of Terry’s Interview

Hello. I'm Terry
When I first noticed something was wrong
The moment everything changed
My cancer came back six months after surgery
The day of surgery
I underwent 30 reconstruction surgeries in six years
I decided I was done with surgery
How I managed my mental health through my diagnosis
How my perspective on life has changed
How I’m helping others gain self-confidence
What I want people to know

Hello. I’m Terry

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.

Thank you for sharing your story, Terry!

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