Author: Chris Sanchez

October 7, 2025

Mental Health Care is Always Vital Care: Dana’s Stage 4 IDC Breast Cancer Story

A clinical psychologist, wife, and mother of two, Dana first encountered invasive ductal carcinoma breast cancer in 2020 during a routine mammogram. At that time, it was stage 1, and she underwent a lumpectomy followed by radiation. Life moved forward, and for a while, cancer became a quiet memory.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Content Warning
This content includes mention of thoughts of self-harm. Please read with care.

Years later, Dana began to experience strange physical changes. A painless bump under her arm lingered, and eventually, small lumps appeared under her chin. Initially, she brushed them off, thinking they were harmless. Only after gentle nudges from her husband and a visit to her doctor did she learn that her underarm bump was a lymph node that required immediate attention. Various scans and biopsies followed, revealing the shocking reality: stage 4 invasive ductal carcinoma breast cancer with liver, bone, and lymph node metastases.

Dana describes feeling stunned and in denial. Her first thought was how to share this news with her children. Although she has lived with bipolar disorder and bouts of depression and anxiety for decades, the diagnosis pushed her mental health to fragile territory. Despite these struggles, she leans on her psychiatrist, counseling services, and her strong support network to help her cope.

Family remains the heart of Dana’s identity and hope. Her husband has been an unwavering source of comfort, stepping in when parenting feels overwhelming. Her children, though deeply impacted, continue to surround her with love. Even the family dog brings daily joy and grounding.

Dana’s treatment plan includes targeted therapy, hormone blockers for her estrogen-positive cancer, monthly hormone therapy injections, and quarterly bone infusions to protect her bones. She has CT scans every three months and occasionally undergoes MRI scans for monitoring. While side effects like nausea, fatigue, and emotional instability are challenging, her scans have shown tumor shrinkage and mostly stable disease. This stability gives her space to focus on her mental health and the relationships that sustain her.

Dana shares her story to remind others with cancer, especially those who also live with mental health challenges, that seeking help is vital. She urges people not to isolate, to accept both practical and emotional support, and to advocate for their needs. Her message: embracing mental health care is as essential as medical treatment.

Watch Dana’s video and browse the transcript of her interview for more on:

Her honest take on living with stage 4 invasive ductal carcinoma breast cancer and mental health challenges
What a small, painless bump revealed about Dana’s health
How family support and therapy became her lifelines
Coping with invasive ductal carcinoma breast cancer beyond the physical impact
Parenting, hope, and emotional resilience from a psychologist’s perspective

Name: Dana S.
Diagnosis:
- IDC (Invasive Ductal Carcinoma) Breast Cancer
Age at Diagnosis:
- 51
Staging:
- Stage 4
Symptom:
- Appearance of large lump in left armpit
Treatments:
- Targeted therapy
- Hormone blockers
- Bone infusions

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

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

Transcript of Dana’s Interview

Content WarningThis content includes mention of thoughts of self-harm. Please read with care.

Hi. My name is Dana

I have stage 4 breast cancer, and I am blessed to live with my husband and two biological children and a wonderful dog. And I was originally trained as a clinical psychologist.

When I first noticed something was wrong

I was initially diagnosed with invasive ductal carcinoma, or IDC, breast cancer in 2020. It was discovered through my yearly mammogram. I had a biopsy, and it was found to be cancer. It was stage one. I had radiation. I had a lumpectomy at the end. You know, I sometimes forget about that time now.

Come a few years later. I had no real symptoms, but I had this bump under my arm, and it didn’t hurt. It just existed there, and I ignored it. I completely ignored it. I thought it was maybe an ingrown hair, so I thought, well, this will reduce in size over time. I’m not worried about it, but it continued to exist, and I continued to ignore it to the point where my husband was saying, “You need to get that looked at.” I rolled my eyes. “Okay,” I said. But I still put it off. One day, I was doing sit-ups, and I felt some lumps under my chin, and then he said, “Go to the doctor.” So I went to the doctor and I said, “I have these lumps under my chin. I think they’re swollen lymph nodes.” He said, “I don’t feel anything off the cuff.”

I said, “You know, I have this bump under my arm.” And he felt it and said, “You need to get checked out immediately.”

People nagged me to get it looked at; it didn’t even occur to me that that could be a lymph node. My father was a pharmacologist. My mother taught microbiology and immunology. So we had a lot of science, a lot of medical knowledge growing up. So I would think that I would recognize a swollen lymph node, but I didn’t. And I wonder if, unconsciously, I put that to the side because I wonder if there’s a part of me that knew that there’s something untoward happening here. And I’m very upset to this day that I ignored it.

What happened next

Therein lies the cascade of appointments and whatnot and biopsies, which turned out to be cancer. Within the lymph node, I still wasn’t that worried. It was still at a low stage. And then I had a full-body MRI. And for some reason, I was able to get the results of that without having anyone speak to me.

I was sitting on the floor in my bedroom, and I remember sucking in my breath, and I said to my husband, “Oh my God, there are liver metastases, bone metastases, lymph node metastases. This is stage 4.” And of course, you know, I’m not a doctor and I can’t officially diagnose that. But that seemed pretty clear to me. And when I talked to a doctor who has since become my oncologist, he said, “Yeah, this is stage 4. We need to get you on treatment immediately.“

The moment everything changed

This kind of stunned silence. I guess I would call it denial. I didn’t register it. I didn’t feel it viscerally that this is stage 4 breast cancer.

My mother had stage 1 breast cancer, and it devastated the family when she was diagnosed decades ago.

My first thought when I heard that I had cancer was, “Oh, my God, how am I going to tell this to my kids?” And I just think a part of me is still in denial. I haven’t really cried about it. I’ve just been in this zone of how do we cope? Next, I would like to cry about it.

My treatment plan

Now that I look back, I think I’ve been very lucky. I’m on targeted therapy and a hormone blocker, because my cancer is estrogen-positive. But progesterone-negative doesn’t really make that much of a difference. Just a little. So, my targeted therapy and hormone blocker. To assist in that, I take an injection of Zoladex hormone therapy monthly. And every three months, I take Zometa for my bones.

I’ve been incredibly lucky. I have a lot of side effects. But they’re atypical.

I have nausea. I become very sleepy very easily. But I think the most profound side effect is that it has impacted my psychology greatly. The combination of my chemotherapies seems to make me very psychologically scattered and unsteady, and running through the gamut of emotions at a moment’s notice. It’s very scary because I don’t feel particularly stable because of that. And recently, it’s been quite profound. So my oncologist is speaking with the associated patient counseling unit to figure out what’s wrong.

The plan is that I get CT scans every three months. I’m getting a brain MRI just to rule out any kind of metastasis, considering my really quick emotional status, if you want to call it that. And then I’m indefinitely on my targeted therapy and hormone blockers, because so far they’ve worked.

My CT scans show that there’s been a shrinkage of all of my tumors. I’m not “no evidence of disease,” but so far, everything is primarily stable. Maybe a tiny bit of progression. But my oncologist says that this is nothing to worry about. And so far, there’s stability. Thank goodness.

How I’m handling my mental health

Before my diagnosis, I dealt with mental health issues for the past 20, 30 years or so. But they stabilized enough to allow me to go to graduate school and earn my doctorate, which was exceedingly interesting. Why do I mention that? Because once I transitioned into my career, my mental health began to really take a hit.

I really, really struggled with that, and tried to function, having children as best I could. Amazingly, I had left my job at a clinic because I felt it. I felt the compensation coming on, and it was bad. I had to quit my job. But amazingly, my psychiatrist put me on a different medication, and it worked. One shift in a medication, and it worked. And I felt great. I felt, quote unquote, normal. I was able to function. I didn’t have any scary thoughts. But a few weeks later, I was diagnosed with cancer, so I only had that break for a few weeks, and then I had the stage 4 diagnosis.

Since then, I’ve been really cool about this and coping and functioning with my family, not isolating myself, and reaching out to people whom I call friends. The downside is that as of a few weeks ago, I had this, what I call a bomb cyclone of emotional energy and wanting to harm myself. And didn’t know where any of this came from. It just hit. I was missing conversations. I knew I couldn’t remember things that I should remember. It’s terrifying. It’s just now coming down a little bit with some medication.

I don’t know if this is related to my past years of mental health issues. But what I do know is that I’ve been reaching out for help all over the place because I cannot live like this. I have to fight cancer, and it’s really hard to fight mental health on top of that.

So it’s a huge juggle, a huge juggle.

Where I find support

First and foremost, my family supports me. My husband, in particular, has been incredible. I feel particularly blessed to have him in my life and to help guide me through this when I don’t feel like I have the capacity to care for my children. It has affected them profoundly, sometimes in really trying and difficult ways. But still, through that, they’ve been incredibly supportive.

I have looked to my newfound friends’ big support just these past few weeks when everything kind of decompensated. My oncologist has hooked me up with the psychiatry department, which in turn has hooked me up with the patient counseling unit within my cancer center. You know, I can’t ask for any more support than that.

I want to have hope

I feel like there have been times when I haven’t had hope, even though I’ve never really felt physiologically that I’ve had cancer. I just haven’t felt anything. So there are times when I feel like I want to have hope.

Will I ever begin to feel something? Will that be my downhill slide? I don’t know. But what I do know is that when I look at my family each day and our dog and all the help I’ve had, it gives me the hope I need when I can’t generate it myself.

I wanted to share my story because I wanted to shed some light on the intersection between cancer and mental illness. I think, at least in my experience, they’re inextricably bound. And we can look at the difficulties, the fears, the loss of hope, even.

And then if you already have mental illness, such as I do with bipolar two disorder and features of depression and anxiety, you put that on top of your experiences, which are profoundly different than what I might have expected, which was just to deal with the fears and the hopes that you have. But I already have these issues on top of it. And so I’m trying to give voice to reach out, get the mental health help that you need to have the capacity to cope with a really scary diagnosis.

My biggest advice to people going through cancer

Do not isolate. I tend to isolate myself, frankly. Don’t do that. There is help. But you have to advocate for yourself and have your loved ones and friends help advocate for you, to give you the confidence to be able to reach out and ask for the help you need.

I got help through psychiatry and patient counseling. It’s been invaluable. To begin to tease these pieces apart of mental health and cancer.

Don’t sit there by yourself. Reach out to the people you love and the help that they can provide.

If you are struggling or feel overwhelmed, you’re not alone.

Support is available:

988 Suicide & Crisis Lifeline (US): Call or text 988 – 24/7 free and confidential

National Alliance on Mental Illness (NAMI): 1-800-950-NAMI (6264) or nami.org/help

Crisis Text Line: Text HELLO to 741741

Please take care as you continue reading.

Thank you for sharing your story, Dana!

Inspired by Dana's story?

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Four-Time Cancer Survivor Teresa is the Definition of Perseverance and Hope through Melanoma, Lip, and Breast Cancer

October 6, 2025

Four-Time Cancer Survivor Teresa is the Definition of Perseverance and Hope through Melanoma, Lip, and Breast Cancer

When Teresa B. talks about her experience with cancer, she doesn’t tell just one story. She’s faced several diagnoses over the years including lip cancer, breast cancer (twice), and melanoma. Through it all, she’s learned what it means to stay resilient and keep moving forward with purpose.

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

Teresa’s first diagnosis came in 2008. What started as a small, persistent spot on her lip turned out to be lip cancer — news that came out of nowhere and upended her life during an already difficult time. The surgery to remove the tumor left visible scars, but it also marked the beginning of something else: her journey toward self-advocacy and learning how to speak up for herself in a complicated medical world. Several years later, Teresa faced a new challenge, breast cancer.

Teresa recalls the paralyzing fear and uncertainty of getting her breast cancer diagnosis, amplified by her family’s history yet absence of genetic markers. Working closely with her care team, she chose a bilateral mastectomy with immediate reconstruction, facing the decision to remove her breasts as both difficult and transformative. Her journey was anything but linear; she experienced significant side effects from her hormone therapy drug, including strokes and heart arrhythmia, which forced her to discontinue the medication. Brain surgery and ongoing health challenges complicated her path, yet she remained determined to stay alive.

Her breast cancer recurred, manifesting across her chest wall, which required intensive radiation therapy. The emotional weight of treatment and frequent appointments was heavy, but Teresa’s support network, especially her girlfriends, provided laughter and comfort. Each checkup brought anxiety, but also relief and gratitude for additional years without disease. Not long after celebrating remission, Teresa faced a melanoma diagnosis. Early intervention and surgery proved effective, resulting in a long-term, cancer-free stretch.

Today, Teresa views life through the lens of breast cancer survivorship, one that involves routine monitoring, speaking up for herself and others, and taking time to reflect on how cancer has shaped who she is. The experience has fueled her commitment to supporting others by launching a podcast and sharing her story publicly. Teresa’s motto, “Not today, Life,” and her message of hope, resilience, and self-advocacy resonate with fellow patients and families. She asserts that while the fear may linger, community, laughter, and a determination to pursue purpose make survivorship more than just an absence of disease; it’s a journey of self-discovery and ongoing renewal.

Watch Teresa’s video and read through the transcript of her interview to learn more about:

Her transformation: From shock and fear to empowerment, Teresa now finds purpose by raising her voice and supporting others
How early detection and acting on subtle symptoms, like changes to the breast, can make a crucial difference
The significance of emotional recovery. It’s as significant as physical recovery, especially when facing body changes and identity shifts
How crucial it is to have a strong support network during treatment and recovery, particularly friends who nurture joy and laughter
A universal truth: Self-advocacy and persistence matter. Patients can and should speak up for their needs throughout the cancer experience

Name: Teresa B.
Diagnosis:
- Lip Cancer
- Breast Cancer (Recurrent)
- Melanoma
Age at Diagnosis:
- Lip Cancer: 43
- Breast Cancer: 48 (Recurrence: 53)
- Melanoma: 54
Symptoms:
- Lip cancer: chapped lips and appearance of a persistent pimple-like growth on lip
- Breast cancer: swollen and enlarged left breast and appearance of lump (Recurrence: appearance of another lump)
- Melanoma: none (discovered during routine skin exam)
Treatments:
- Surgeries: bilateral mastectomy with reconstruction, lumpectomy, craniotomy, Mohs surgery, wide local excision
- Hormone therapy
- Radiation therapy

Teresa B. breast cancer survivor experience

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 Teresa’s Interview

My name is Teresa
First signs of cancer: my lip cancer diagnosis
Five years later: breast cancer strikes
Understanding my treatment options
The side effects I experienced
Emotional recovery: losing my breasts and identity
My genetic testing and family concerns
Breast cancer recurrence: discovering and treating a new tumor
Melanoma diagnosis: another battle
Long-term monitoring and survivorship
Where I found support
My message of hope

My name is Teresa

I live in Massachusetts. I was diagnosed with breast cancer in 2013.

I’m a four-time cancer survivor. My friends and family would describe me as a go-getter and a warrior. I continually strive to achieve the goals I set for myself. I love traveling, especially overseas. Experiencing different cultures and authentic local foods is
something I value. The food in Europe is so much cleaner and purer compared to what we get in the United States.

First signs of cancer: my lip cancer diagnosis

In 2008, during the financial crisis, I lost my job in the tech industry. I started training individuals outdoors in California. My lips were always chapped, and one day I noticed a bump that looked like a pimple. The pain was intense, and my esthetician advised me to see a doctor. After a biopsy, they called to tell me I had lip cancer. I received Mohs surgery, and by the end, my lip was swollen, and I was shocked by the recovery process.

Five years later: breast cancer strikes

I never thought the cancer would come back. When I was diagnosed with breast cancer, I noticed my left breast looked larger. I felt a hard mass, not a lump, which was concerning. My doctor immediately sent me for a mammogram and biopsy, confirming
breast cancer.

Understanding my treatment options

I met with oncologists and surgeons to determine treatment. Options included lumpectomy, bilateral mastectomy, and reconstruction with implants. My family has a history of breast cancer with no genetic traces, so I chose a bilateral mastectomy with immediate reconstruction.

The side effects I experienced

My cancer was hormone receptor-positive but non-reactive to chemotherapy according to the Oncotype DX test. I started tamoxifen but soon developed severe side effects, including strokes and heart arrhythmia. Eventually, I required brain surgery for aneurysms and had to discontinue tamoxifen.

Emotional recovery: losing my breasts and identity

Deciding to remove my breasts was difficult. The moment I saw my reconstructed chest, I cried — it was better than expected but still an emotional loss. Later, getting implants restored a sense of identity for me as a woman.

My genetic testing and family concerns

Early on, genetic testing screened for 138 different genes; all were negative. My father died of colon cancer, but I had no hereditary indicators. I was relieved that my three sons wouldn’t inherit any cancer genes.

Breast cancer recurrence: discovering and treating a new tumor

Five years after initial recovery, I discovered a new mass. Extensive testing showed cancer across my chest wall, treated with three months of radiation. Radiation was intense and led to depression, but subsequent scans show I’m six years cancer-free.

Melanoma diagnosis: another battle

In 2019, soon after celebrating the end of treatment with friends, I was diagnosed with melanoma. Early intervention and surgery were successful, and I’ve had no recurrence for six years.

Long-term monitoring and survivorship

Ongoing monitoring includes manual exams and scans. Frequent checks are necessary, but I am moving towards yearly appointments. Survivorship means finding purpose, especially through my podcast and writing — a way to heal myself and inspire others.

Where I found support

My support network of girlfriends was essential. They attended appointments, hosted slumber parties, and helped me find laughter and normalcy during the hardest times.

My message of hope

Hope means you can rise above anything. If you want something badly enough, you’ll achieve it. My motto is: ‘Not today, Life.’ Never give up on yourself, bring in friends who bring joy, and always advocate for your health.

Thank you for sharing your story, Teresa!

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Enjoy Every Sunset: Matt’s Stage 3 Testicular Cancer Story

Post author By Chris Sanchez
Post date October 6, 2025
No Comments on Enjoy Every Sunset: Matt’s Stage 3 Testicular Cancer Story

October 6, 2025

“Enjoy Every Sunset”: Matt’s Stage 3 Testicular Cancer (Embryonal Carcinoma) Story

Matt shares his experience with stage 3 testicular cancer. He began to suspect that something was off when he started experiencing nagging lower back pain that he blamed on his mattress. For six months, he brushed off dizziness, fatigue, night sweats, and heart issues, never imagining it could be cancer. Only when he woke up one morning, unable to feel his left leg, did he finally get scans.

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

At first, Matt’s doctors thought he had a sarcoma. They found a tumor the size of a football, which left him shocked and terrified about losing the ability to walk. But weeks afterward, he received the surprising news that it was actually testicular cancer, specifically an embryonal carcinoma. (Editor’s Note: Embryonal carcinoma is a rare, aggressive form of testicular cancer in which germ cells, which would normally become mature sperm cells, instead form a malignant tumor inside a testicle.)

This diagnosis gave Matt hope because it meant that he could have chemotherapy. He started four intense cycles of chemo and struggled with the side effects, which included exhaustion, ringing in his ears, numbness in his extremities, and a constant fire-like heat in his face. The physical toll was heavy, but the mental weight of isolation and fear was just as real.

The treatment worked, shrinking Matt’s tumor to the dimensions of a mango. He later underwent major surgery. Recovery was grueling, involving days lying in the ICU filled with tubes, pain, and the emotional rock bottom of feeling trapped in his own body. But hearing that no active cancer remained was heartening. Slowly, he began walking again, regaining some normalcy and learning to trust his body.

Life after testicular cancer brought both reflection and purpose. Matt became “One Tough Nut Matt” on TikTok, sharing his story to raise awareness and offer the support he himself had once needed. He encourages men to check their testicles, listen to their bodies, and not ignore symptoms. He now savors small wins like watching sunsets, walking on the beach, and connecting with others.

Matt’s story is an authentic reminder that paying attention to your health — and talking about it — can save lives. Watch his video and read through his transcript to find out more about:

How he went from thinking he had a bad mattress to discovering a football-sized tumor in his body
What led Matt to prepare for a life-changing surgery that he thought he might not survive
How he became the “1% of the 1%” and found hope in the most unexpected diagnosis
How chemo pushed Matt to the edge, but how sharing his journey online gave him strength
Matt’s mantra, “Enjoy Every Sunset,” and how it was born from the days he thought he’d never walk again

Name: Matt B.
Age at Diagnosis:
- 34
Diagnosis:
- Testicular Cancer (Embryonal Carcinoma)
Staging:
- Stage 3
Symptoms:
- Severe lower back pain
- Loss of sensation in left leg
- Dizziness
- Fatigue
- Night sweats
- Heart complications
Treatments:
- Surgeries: retroperitoneal lymph node dissection (RPLND), orchiectomy, liver resection, hernia repair 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 Matt’s Interview

Hi, I'm Matt
When I first noticed something was “off”
The moment everything changed
I was originally misdiagnosed
When I found out the correct diagnosis
My treatment plan
The side effects I experienced
What recovery after surgery looked like
How surgery impacted my life
How I managed being diagnosed with cancer so young
How I spread awareness
How I look at life now
How often I’m monitored
What survivorship looks like to me
What I want others to know

Hi, I’m Matt

I’m from Australia. I was diagnosed with testicular cancer on the 4th of July, 2024.

I’ve always enjoyed getting outdoors, living in Australia. We all live by the beach, right? Everyone grew up along the coast of Australia. Spending a lot of time at the beach, getting out with my mountain bike, was what I loved doing.

I’m funny, often ballsy. I’m always the one going rogue and creating a bit of excitement. I like to consider myself the life of the party, right? I bring a lot of laughter to people’s faces.

When I first noticed something was “off”

I went for a period of about six months, during which I had some really crazy lower back pain.

At first, I didn’t think much of it and kind of ignored it. Then it got worse to the point where I was having trouble sleeping. I was adamant that the mattress I was sleeping on was causing my back pain. So I bought multiple new mattresses, but it only got worse and worse. And this all happened over six months.

I went and saw my chiropractor, and he had some concerns and said, “Matt, if you wake up and you feel like you lose any feeling in your legs, you need to go get these scans done.” A couple of days later, sure enough, I woke up and I couldn’t feel my left leg anymore. And that’s what triggered me to finally get a scan.

I had dizziness, fatigue, night sweats, and lots of heart issues. I was put on a high blood pressure medication. I was put on heart rhythm medication for issues that my watch was telling me I was having with my heart. I kind of never really pieced those symptoms together as being something serious. It was only after the fact that I was like, “Well, hold on a minute.” I never had these symptoms before six months prior. So all those things were my body telling me that something was wrong, but I just never listened to the signs.

The moment everything changed

The radiologist came out, and I remember him asking me, “How long have you had back pain?” And I said, “Look, six months, kind of laughed it off.” And his words were, and I’ll never forget them, because it was like he had seen a ghost. “I think we’ve found the reason why you’re in so much pain. I’m going to call your doctor and see if he could arrange a few more tests.”

So I remember lying on that table, waiting for him to come out; it felt like a lifetime. And in that moment, I remember everything flashing in front of my eyes and ultimately him coming out and doing another CT scan, but with contrast this time. And it wasn’t until a few hours later that I’d get a call from my doctor to tell me that they had found something.

I was originally misdiagnosed

She said to me, “Look, Matt, they found a sarcoma.” And I went, “Okay. What’s that? Like, what do I do for that?” She said, “Look, it’s not that big. It’s about the size of a pencil, but it’s really long.” And I said, “What do you mean? What are we talking about here?” And she said, “It’s a muscle cancer.”

There are only a few specialized clinics in Australia that deal with sarcomas. So I was seen by a surgeon the very next day after being diagnosed. He said, “Look, you’ve got this tumor growing in your psoas muscle,” and I said, “At least it’s not very big.” He said to me, “Oh no, Matt, it’s very big.”

They’d actually made a typo on my original report. It wasn’t the size of a pencil. It was the size of a football. They’d confused a few of the measurements. So he said, “It’s really serious. Sarcomas are really serious.” And I said, “Okay, so if I have cancer, we’re talking about chemo, right?” And he said to me, “Chemo is off the table. It’s not something we can do for the type of cancer you have. We think you have a really aggressive, fast-growing muscle cancer, which is a liposarcoma. And the only treatment that we can do for you is to rush you into surgery and hopefully cut it all out.” He added, “Your tumor is growing along your spine on the main artery that supplies the blood to your legs. It’s growing against your kidney. It’s growing into your femoral nerve.”

At that point, I didn’t even know what a femoral nerve was, but I now know that it’s the nerve that supplies blood to your thigh down to your knee. And it allows you to squat, allows you to run, allows you to bend your knee. And I said, “What does that mean? Am I going to be able to walk after this surgery? He said, “You will be able to walk, but you’ll just have to learn to rewalk in a new way because you’ll have no control over that left leg.”

And in that moment, it all hit me. I went silent. I couldn’t talk anymore because for me, it was a massive deal to not be able to walk properly ever again.

When I found out the correct diagnosis

On that drive home, I received a call from my surgeon. And I thought, “What is going on? Why would the surgeon be calling me? I literally just saw him.”

He was calling to tell me that the biopsy results had come back, and I didn’t have a sarcoma. I actually had testicular cancer, and I had what was known as an embryonic carcinoma. A really rare type of testicular cancer, but it was testicular cancer, and he couldn’t be happier.

I was so confused. I’m like, “Why are you so happy? Is this a good thing?” He said, “This is an amazing thing. Your survival rates have just shot through the roof. The surgery is off. We’re going to send you straight away to start chemo. This is the best-case scenario. You already had the rarest type of cancer. You are now the 1% of the 1%. Take this as a miracle. This is your Hail Mary. You’ve got a chance.”

I was literally in disbelief. I did not see it coming. I had psyched myself up that I was going into this major surgery. I was going to walk through those doors at 5 am for a nearly 12-hour procedure, and I didn’t know if I was going to walk out of it again.

So I was in shock. Hey, how have I just gone through the last three weeks preparing for the worst, and now I’ve just had this miracle happen to me that I have testicular cancer? And it’s something I should be excited about. It was just like a whole massive mind spin for me.

I wanted to be excited, but I also just realized that I just found out that I had testicular cancer. How many people celebrate when they get told they have testicular cancer? I was now one of them.

My treatment plan

I basically got sent in to see an oncologist straight away, a specialist in testicular cancer. They found a very small lump, smaller than a pin, on my left testicle. And from there, they worked out that I had an embryonic carcinoma. Only around 20 to 40 people get it each year here in Australia. So it is really rare. It was considered a very aggressive cancer.

So they needed to go hard, and because of the size of my tumor, having surgery straight up wasn’t an option. It was, as I said, growing faster every day and bigger than a football. It was in my retroperineal. So it meant that it was really hard to get to. So they needed to shrink it. And the plan was to try to shrink it to get me ready for a pretty major surgery, but hopefully with better outcomes, where I could still walk properly.

So we did four cycles of chemo.

The side effects I experienced

The chemo I took is notorious for being rough. Those who have gone through it can attest to that.

For me, straight off the bat, in the first week or two, I started losing my hearing. I had ringing in my ears. I lost the feeling in my hands and feet. My face always felt like it was on fire. I had watched too many movies, and I had assumed that when you went through chemo, you would lose a lot of weight because you’d always be sick all the time, but the opposite was true for me because of the steroids they put you on to help with some of those symptoms. I couldn’t stop eating. I was eating five or six meals at a time. I’ve never been that hungry in my life. I just lost 20 kilos before I was diagnosed. I put on 10 kilos in eight weeks during chemo. But the biggest side effects for me were definitely the loss of feeling in my hands and feet, and the overall toll that chemo takes on your body.

I went through a trial for my chemotherapy. So, although this kind of chemo has been around for a while and is the mainstay for testicular cancer, they wanted to see if they could give it to me faster. So instead of having the break weeks, I just went back-to-back in these chemo cycles. So by cycle three, I was an absolute wreck. I couldn’t stand. I was so fatigued and exhausted. I couldn’t even talk. I went through periods of well over two months where I couldn’t put a sentence together. And everyone who knows me knows that I’m a talker.

We managed to shrink the tumor from being football-sized to the size of a mango. They wanted to do a retroperineal lymph node dissection or an RPLND, and we went in for one.

Although they had to take my psoas muscle, they were able to save the nerves, the femoral nerves. So I’m still able to walk normally, which is fantastic. While they were in there, they also found some tumors on my liver. So they did a liver resection. And they also found a hernia in my groin from the tumor. So they went in and fixed up the hernia as well. So that was a nice surprise waking up to that.

What recovery after surgery looked like

I woke up in the ICU after the surgery. I was cut open from my ribs all the way down to my groin. I obviously lost my abs. I had too many staples to count, well over 100, and I realized in that moment that this was going to be a tough few weeks recovering.

I had tubes coming out of everywhere. I had tubes down my nose, down my throat, in the side of my throat, in my stomach, in every arm. I had catheters, cannulas, everything. It was just machines everywhere. I had been prepared for some tubes. I knew I was going to get a tube in my throat and in my arm. I was told that I might need some sort of tube to drain my stomach, but no, nothing had prepared me for what I was going to wake up to. It was overwhelming. That was when reality set in, and I was unable to move because I had no core strength anymore. I couldn’t breathe.

And I was just constantly hearing machines beeping, and I was just going, “What is going on? Why is everything beeping?” The doctors said, “You’ve got to breathe, Matt, keep breathing.” It’s laughable now, but at that moment, I was just struggling.

And so this is the thing they don’t really talk about much. When you go on bleomycin, it causes a lot of damage to your lungs. But something they don’t tell you about is that when you have surgeries and so forth after it, you can’t be given a lot of oxygen because it can cause a really dangerous side effect. So my oxygen levels were dropping really low, but they weren’t able to give me much oxygen to bring them back up. So it was a perfect storm.

So I ended up spending three or four days in the ICU. I was not recovering well. My stomach was not draining well, so it was collecting a lot of bile, and it constantly needed to be pumped. I was also draining a lot of fluid from the incisions. Mentally, I was at rock bottom. I really struggled with having tubes down my throat. I knew I was going to have a tube, but I wasn’t prepared for how big it would be. And it really made me spiral, and it was probably the lowest part of my treatment. And that was where I hit rock bottom and could no longer mentally cope with what was going on. So I was heavily sedated to get me through the next couple of days. I was then relocated to a ward. And I spent well over two weeks in the hospital recovering.

Ultimately, we got a Christmas miracle, and on Christmas Eve, I was discharged after spending the night before watching the classic Christmas movies and crying myself to sleep because I was sitting in the hospital and I couldn’t move. I was discharged and sent home, and was able to spend Christmas with the family. But the next day I found myself back in the emergency. So at that point, my stomach had slowly started to restart, but I got a little bit ambitious. I’d gone from chicken broth in the hospital, so clear liquids, to trying to have a sandwich. And the sandwich was just too much, and my stomach went back into paralysis. So I couldn’t stop being sick. And at this point, I still had a thousand staples. So I risked bursting my stomach.

I was sent to the ED, the emergency department here, while I frantically tried to contact my surgeon to work out what was going on. He ultimately called them back and said, “Look, Matt’s going to be all right. There are no blockages. They did some scans. We don’t need to put the tube back in.” And they actually said you can take out the staples.

The best news that I got was that they got the pathology results back from the tumors. I sat down with the surgeon a week later. And I was told that there was no active cancer found in any of the tumors they took out, which was the best-case scenario.

I was in shock because I’d been given so much bad news over the seven or so months before it that I became so immune to positive news. I just didn’t think that was something I would get again. I just thought nothing would ever improve in my situation. Chemo really did a number on me. And although I fought every day and took it a day at a time, it wore me down. So by the time I had the surgery, I just wanted it done. I wanted to just move on. But I also felt like I was never going to be allowed to move on. So hearing that news was absolutely, absolutely amazing, to be told that there was no active cancer, and I didn’t have to go through another cycle of chemo.

How surgery impacted my life

I’d been off work for seven, seven or eight months. I’d regressed in the sense that I didn’t go out. I was so scared of getting sick. I was so paranoid that I was going to get unwell and end up back in the hospital that I self-isolated in many more ways than one.

I was lucky to be surrounded by so many supportive family members, friends, and work colleagues who were all backing me up. So I never once felt alone. I felt like no one really understood my situation, but I never felt alone, and I had a group of friends that would come around and really back me up when I was at my lowest. They were there to cheer me up, take me out, and show me that there was life after cancer, and that really got me through those tough days.

Things have been limited — even now, I’m still slow on my feet, although I’m able to walk normally, I did lose a muscle in my leg after all. So my body has to relearn how to do some things. It’s an adjustment.

I’m hoping to get back into the gym and get back to the beach this summer and get back to a bit of normality and socializing, doing things with my family.

How I managed being diagnosed with cancer so young

It was a shock. I’d never had a health scare in my life. I’d never been through anything significant like this before. And it really caught me off guard. I don’t think I was mentally prepared for the storm that I was entering. As every young guy does, you think you’re invincible. And that’s how I lived my life. I’d just been on a health kick. So I thought I was in the best shape of my life.

I really thought I was invincible. And life really threw that curveball at me. I would say I probably handled it better than I thought I would, mainly because I was told that I had something so bad that the chance of survival, long-term survival, was really tough, right? So then, when I got told I had this second lease and opportunity, I was thankful that I could have chemo. I was thankful that I could have this surgery. Whereas I think if I didn’t have that scare at the start, it probably would have been a different process because I just would have been so caught up in just getting cancer.

So I do think that helped me, and that kept me on this positive track the entire time. I was always forward-looking.

It was a tough one. I’ve never been the manliest. I’ve never been the most alpha. I’m a pretty passive guy, right? So it never really dawned on me that I was losing some of my masculinity or anything like that. I was actually happy to see the removal of this testicle. It had caused so much damage in my body and almost killed me that I was happy to see the back of it.

I constantly get asked, “Do you miss it?” Some people even say, “You must feel like less of a man.” Not at all. I might have one ball now, but I’m twice the man I was before.

That’s how I live my life now. That’s the message I’m spreading to everyone as I tell my story.

How I spread awareness

I met with my oncologist for my three-month check-in. He said to me, “Matt, you’ve had the biggest tumor that we’ve seen, and you’ve come through your diagnosis. Are you going to write a book now? What are your plans? You’ve achieved something remarkable.”

I never really thought about it like that. I know so many people go through this, and I’m not unique. But he’s said, “Well, you kind of are.”

I went away for a week and thought, “What can I do to give back?” And the first thing that popped into my mind was, “What did I do when I needed help?”

I went to TikTok and I reached out to other testicular cancer survivors and people going through treatment for help, and it was slim pickings. So I thought, “Well, why don’t I get on there, put myself out there, talk about a topic that no one else really likes to talk about?”

So I got my handle, which was the hardest part, “One Tough Nut, Matt.” That’s my persona. I’m one tough nut and that’s how I’m going to I’m going to tell my story.

I started doing lives to try and encourage people to follow me and to ask questions and ask all the things that I didn’t know. I didn’t know what testicular cancer was before I was diagnosed. I thought that was prostate cancer, and that was something only older people get. I had no idea that testicular cancer was the most common cancer for young guys. None whatsoever. I didn’t know that I had to check for lumps. It was just something that never came up. I started with one or two people in my lives. And just earlier today, I got up a live with over 300 people at one time, which is just blowing me away with the support. I’ve had thousands of followers join me over the last couple of weeks. My videos are blowing up, and it’s been awesome because I’m starting a conversation about something guys don’t really like to talk about.

I wake up every morning to so many messages of support. So many views of my videos. But most importantly, my inbox is flooded every day with someone starting their journey about testicular cancer. And I’m answering all the questions that I wanted answers to. And it might be silly to some, but when you’re in that bubble, you want those little things answered, and Google can’t help you with that. Like, when will your hair actually start growing after bed? Why does it hurt when you get the injection on day six? All the little things that no one really tells you about, and you can’t go to Google for.

I do that, but it’s almost scary that I wake up every day to someone new who’s starting treatment, about to get an orchiectomy, and they need some support.

That live that I was just on, the moderators had to block nearly 200 people for hate and trolling, and I wake up to messages most days saying that they hope my cancer comes back. There are some days when I wake up and just go, “Should I keep doing this?” It’s a heavy emotional burden to carry. But I’m blown away by all the other people who do support me, people who moderate, help me answer questions. We have around 20 to 30 testicular cancer survivors on the live each night that answer questions for everyone else.

How I look at life now

I get asked a lot, “Has your perspective on life changed? Are you going to quit your job? Are you going to move to another country?” And my answer is no. But I don’t overthink the little things anymore. That’s been a massive perspective change for me, right? I don’t sweat the little things anymore. And my catchphrase that I say at the end of every TikTok live is enjoy every sunset. And by that, I mean, enjoy every day.

When I was told that I might never walk properly again, all I wanted to do was run. And I hate running. When I was sitting in a hospital bed, all I wanted to do was go outside because I couldn’t. So now I enjoy every sunset because it’s those little things that make life so important. It’s so clichéd, but when you can’t do something, it’s all you care about. So at the end of every day, I sit out and I watch that sunset and I’m just grateful for another day.

One of my TikTok followers actually just sent me a shirt yesterday, and it has “Enjoy Every Sunset” printed on it. My favorite one is actually this shirt here that she designed. I was blown away that someone would go to that effort. That’s what keeps me doing this stuff because I know I’m having an impact.

I received a message from someone who said, “Because of you, I went and got checked. I have testicular cancer, and not for a minute do I ever think that I’m not gonna make it because I watch your videos and you inspire me every single day.” So I’m like, “Okay, I gotta keep doing this.”

How often I’m monitored

I’m on surveillance scans. I’m checked every three months. The type of cancer I had is really aggressive. The chance of it coming back is most likely in the first six months to a year. So we’re keeping a close eye on things. On my last scan, something did show up in my lymph nodes in my lungs. They’re not confident it’s the cancer returning, given that my tumor markers aren’t elevated.

What survivorship looks like to me

I spent six months where I couldn’t look in the mirror because I couldn’t face reality. It almost tears me up just talking about it, but I couldn’t face reality, right?

I almost disconnected that I was going through cancer. And now that I’ve come out of it, I disconnected that I was a survivor. But this whole process that I’ve done to talk about it on TikTok has actually been beneficial for me. It’s almost like free counseling because every day I get to talk about it. I get to talk about the things on my mind. I get to unpack it. And there are so many days that I’ll be talking to other people going through treatment for testicular cancer or any type of cancer, and I’ll remember things that I blocked out and hidden away in my brain during treatment. I’ll be like, “Yeah, that did happen. I did have that issue, and this was a complication for me.” And that is why I say the second part of survivorship for me is being able to help others.

I’ve gotten through and survived every one of my bad days. So that’s a constant reminder to me now that I can continue to fight every day. Things might not go according to plan, but I’ve survived every single day, and I continue to do that every day. And now I want to help others do the same.

What I want others to know

The tip that I give everyone and the comment I always say is “Check your balls.”

I was never told to do that. But look, I am a little bit unique. I didn’t have any stage one symptoms, which are lumps, swelling, pain, and changes in testicle size. I skipped stage one and escalated things along and ended up just having back pain.

But now that I’m out here educating everyone about how to check and keep an eye out for testicular cancer, back pain is a symptom of testicular cancer.

Trust your body. I went six months ignoring symptoms. I thought there was no way I could have anything serious. I definitely didn’t think I had the C word. I should have listened to my body and worked out that something was wrong and taken that scan. So if you know your body best, if something doesn’t feel right, talk to a professional. Don’t do what I did because I could have had a better outcome if I had caught it a little bit earlier.

Thank you for sharing your story, Matt!

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How Ali Faced Stage 2 Colorectal Cancer While Pregnant and Became Her Own Best Advocate

Post author By Chris Sanchez
Post date October 4, 2025
No Comments on How Ali Faced Stage 2 Colorectal Cancer While Pregnant and Became Her Own Best Advocate

October 4, 2025

How Ali Faced Stage 2 Colorectal Cancer While Pregnant and Became Her Own Best Advocate

Ali’s story of living through stage 2 colorectal cancer is both inspiring as she speaks from the heart. She first noticed that something was wrong after a summer trip to Italy in 2023, when she started suffering unrelenting bloating even after just a sip of water. At first, she blamed the food she and her husband ate there, then started suspecting hemorrhoids when she began noticing occasional bleeding during bowel movements. But as months went by and the bleeding became more frequent, especially during her pregnancy, she trusted her instincts and pushed for a GI consult. That self-advocacy led to a flexible sigmoidoscopy while she was 25 weeks pregnant, which revealed a rectal mass.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Ali’s life shifted dramatically. She navigated high-risk pregnancy care, sought a second opinion, and coordinated closely with her OB-GYN. Her doctors recommended waiting until 35 weeks to deliver her daughter before starting chemotherapy for her colorectal cancer, balancing her health with her baby’s safety. Postpartum and in the middle of chemo, Ali embraced small joys such as walks by the beach, music classes with her baby, and time with family to keep her life grounded and meaningful.

Chemotherapy brought its share of challenges. Ali endured fatigue, nausea, neuropathy, cold sensitivity, and even anaphylactic reactions that turned infusion days into 12-hour marathons. In the face of these side effects, she leaned on her support system and remained vigilant about her care. Her active role in decision-making, from seeking second opinions to adjusting her lifestyle, was key to her empowerment.

Over time, her efforts and her team’s careful planning paid off. By the end of 2024, follow-up scopes showed the tumor had shrunk significantly, and by early 2025, she celebrated being in remission. Now, Ali continues close monitoring with regular MRIs and scopes, all while embracing a cleaner, healthier lifestyle and a new appreciation for family time and self-care.

Ali’s story is a reminder that noticing symptoms early, advocating for yourself, and holding on to hope can make all the difference. Watch her video and read through her interview transcript for more details about:

How bloating after a holiday led to a life-altering diagnosis
The pivotal moment Ali didn’t cancel her scope appointment
Navigating postpartum life while undergoing chemotherapy to treat stage 2 colorectal cancer
The lifestyle changes Ali swears by after remission
Why self-advocacy can be life-saving for young moms

Name: Ali R.
Diagnosis:
- Colorectal Cancer
Staging:
- Stage 2
Symptoms:
- Rectal bleeding
- Thin stools
- Bloating
Treatment:
- Chemotherapy

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

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

Transcript of Ali’s Interview

I am Ali
When I first felt something was wrong
How I felt before my scope
I was scheduled for a flexible sigmoidoscopy
The moment everything changed
Why I decided to look for a second opinion
The day my daughter was born
I’ve always wanted a big family
The factors that weighed on my treatment decision making
My treatment plan
Being a new mom while navigating cancer
The cancer is gone
My lifestyle has completely changed
What I want others to know

I am Ali

I was diagnosed with colorectal cancer, stage 2, in May of 2024.

When I first felt something was wrong

In the summer of 2023, my husband and I went to Italy, and I came back, and I just felt abnormally bloated. And then it didn’t go away. At first, I thought, “Oh, it was just all the cured meats and pasta that we were eating in Italy.” And it didn’t go away all summer. It got to the point where I would take a sip of water, and I would have to unbutton my jeans, like that’s how much I was bloating.

That went on for a few months. And then, in the fall of that same year, I started bleeding with my bowel movements. And it wasn’t constant. It wasn’t every single time. But it was enough for me to be like, “That’s weird.” I have had hemorrhoids before, so at the time, I was not concerned at all. I was like, “Oh, okay. It’s got to be the hemorrhoids.”

Then we were trying to get pregnant. I did get pregnant and found out in December. My symptoms actually kind of went away for like a few weeks. I wasn’t bleeding anymore. And then my symptoms came back pretty strong at the end of January, February. I was bleeding almost every single time I had a bowel movement.

It was red blood. A lot. I was seeing a group of midwives at the time, and I brought it up to them. And one told me that she wanted me to go see a GI specialist. She’s like, “At least establish that care relationship. It sounds like way more blood than you should normally have with just hemorrhoids.” So I did that. I went to a GI and without any hesitation, she was like, “I’m scheduling you for a flexible sigmoidoscopy.” It hit me at that moment that this could be something serious and that it might not be just hemorrhoids. Although in my head I still was like, “This is probably hemorrhoids.” So then I scheduled it.

How I felt before my scope

I had my scope coming up in a couple of days. I was feeling great. I honestly had a wonderful pregnancy. Like a dream. I loved being pregnant.

It was a beautiful day in April, and we went to hang out on the beach. And I knew I had a scope in a couple of days because I was bleeding rectally. And to be honest, I didn’t think anything bad was going to come of it. So that day, I told my husband and my mom that I wanted to cancel it, and I was way more afraid of the actual procedure of the flex. I was getting a flex sigmoidoscopy, which, even as a nurse, I didn’t even know that you could do that while pregnant.

So I was way more afraid of the procedure. I was afraid of something happening to my baby. I was afraid it was going to hurt because I knew I was going to be awake. So that was the only thing on my mind that day, and I was planning on canceling it. And for some reason, I just stuck with my gut, and I didn’t end up canceling it, thank God.

I was scheduled for a flexible sigmoidoscopy

I went to the hospital to get the procedure done. It was May 2nd. Again, I wasn’t really thinking about the results; I was just thinking about the actual procedure itself.

My husband came with me. I was in the pre-op room, getting an IV and getting checked. They had to do fetal monitoring the entire time just to make sure that the baby was okay. And they had a an L&D nurse come down to monitor. And then they took me in for the procedure. They can’t monitor the baby during the procedure, but they monitored her pre-op and post-op.

So then I went in for the procedure. It was very quick. It was probably 15 minutes, tops. And at the very end, the doctor told me, while I was still lying on the table, that he had found the source of the bleeding. I could tell by the tone of his voice that it wasn’t hemorrhoids. It was something bad.

So he told me he found a mass in my rectum, and I feel like I just blacked out, honestly. The nurse who was taking care of me was holding my hand, and I actually used to work with her in the ICU, where I started as a nurse, so that was very comforting in that moment, since they don’t let your significant other in the room with you.

So they wheeled me back, I started crying, and then my husband was there. They brought me to the recovery room and started talking about it. They didn’t say that it was definitely cancer, obviously, because they had to biopsy it.

So the doctor did biopsy it. He did tell me brutally and honestly that he thinks it is cancer. And I could just tell by his tone that he knew it was. So he right away established care for me through a surgeon and oncologist, and everyone that he recommended within the system that I was currently at. They also brought down my midwife because they were in the hospital surroundings. And then she brought down a high-risk doctor that she recommended because I couldn’t see the midwives anymore. After all, mine was now considered a high-risk pregnancy. So I met my new high-risk OBGYN. She was incredible.

I was 25 weeks pregnant.

There was a lot of crying and hugging. And then as we were leaving, I called my parents and they drove up right away. And again, even though it wasn’t confirmed as cancer at that time, I knew it was so.

The moment everything changed

The next day, I was checking out MyChart on my phone. And I was just refreshing it for the next 24 hours, like I feel anyone would do in my situation.

I saw that the results were up. My husband and I were sitting on the couch just waiting, and I couldn’t open it. I just couldn’t do it. He was like, “Why don’t you just wait for the doctor to call? As soon as they get the results, they’re going to call anyway. You don’t want to read it and freak out and not talk to him and whatever.”

Of course, I couldn’t wait, so I opened the results. I saw that it was positive for adenocarcinoma.

And then my doctor called, probably two minutes after I opened it, and he just talked me through it. He was amazing.

So this was also like the week of Mother’s Day, and my husband had gotten me a blanket as a gift for my first Mother’s Day. I’m looking at it right now. It has my ultrasound of my daughter on it, and it says something like, “I can’t wait to meet you. I’m so excited for our adventures together.” And all this beautiful writing on it.

I feel like my life was flashing before my eyes at that time because I was just, like, how did the word “cancer” come up? I haven’t even met my daughter yet. Am I even going to be able to have these adventures with her?

I was just panicking that I wasn’t going to be able to actually be her mother.

Why I decided to look for a second opinion

I looked outside where they recommended with the system that I was in, because I wanted to get the best care that I could get. I was 32 and pregnant, and I wanted to tackle this in the best way.

So went to New York City. I went to Memorial Sloan-Kettering, which is amazing.

I was very confused at the time because I knew Memorial Sloan-Kettering doesn’t have an OB-GYN, and I wasn’t sure how they wanted to tackle this. On that end. And I was pregnant as well. So what ended up happening was I saw the doctors that they recommended. But I decided not to go that route. One wanted to do surgery on me while I was pregnant, and that just didn’t sit well with me. So that’s why I got a second opinion at MSK.

Once at MSK, I absolutely loved them. My doctor made me feel so comfortable. She told me that we can absolutely keep the OB-GYN that I’m using. That I did not have to seek anyone else because they’re going to coordinate with each other and figure out the best route to go. This was to wait to treat my cancer, and also deliver my baby early. But not too early where it’s not beneficial to her.

So they had agreed that waiting till I was 35 weeks pregnant was going to be ideal. She said it wasn’t a fast-growing cancer. And that ten weeks wouldn’t make a huge difference. So we waited ten weeks, and then we scheduled a C-section for 35 weeks.

About the ten-week frame. I was panicking. I didn’t like the idea of knowing that I had cancer in my body and waiting ten weeks. I felt like I was stuck. Okay, I want to do what’s best for my daughter. We cannot deliver her right now. Also, I know that they can give chemo while pregnant. But my doctor felt like I was far enough along where we didn’t need to do that. And then also, obviously, that worried me about her being in my belly and giving me chemo. So I wasn’t nuts about waiting ten weeks, but I do feel like it was the best option. So I just kept reassuring myself that that was what the doctors recommended and that we’d get to it as soon as she was out.

The day my daughter was born

It was July 8th, 2024. I went in for my C-section, which I wasn’t happy about either.

Obviously, I wanted to have the birth that I wanted to have. I wanted to at least try to have, you know, a vaginal delivery. So I did feel kind of stripped of that opportunity. And the whole reason that they wanted to do a C-section was that they were afraid that if I tore where my rectal tumor was, it was too close and that it would mess with it. So the surgical oncologist that I saw highly recommended a C-section.

My doctors were amazing. I had two doctors whom I was primarily dealing with at the OB office. One was the one who met me the day that I found out at the scope. Actually, I was scheduled with the other doctor, but then she came in on the day of my delivery, on her day off, just to be there, and it was so comforting. I couldn’t have asked for a better team.

And she came out and delivered her. I’m a NICU nurse, so I know that at 35 weeks, the babies tend to do pretty well if they’re born at that time. Unfortunately, my daughter had to be intubated, which I was not expecting at all. But I guess because it wasn’t spontaneous labor, and they were taking her out of my belly at 35 weeks. She wasn’t ready to come out. So they did have to intubate her and admit her to the NICU. She did great.

But I was on the table during the C-section and knew that that was happening. And I started spiraling. I started panicking, so yeah, they had to give me a little something to calm me down.

And then I was obviously so eager to go see her in the NICU. So, you know, there’s a certain amount of time you have to wait after a C-section to be able to get up into the wheelchair to go see your baby. But I made it happen in a few hours, and they were all very supportive. They all helped me. So it was an amazing day. Minus the struggles.

I’ve always wanted a big family

I just knew I wanted multiple kids. So I had actually seen a fertility doctor while I was still pregnant. I’m a planner. So normally, if someone were to get diagnosed with cancer and they were pregnant, they would probably go and preserve some eggs. However, since I was pregnant, I couldn’t do that, obviously. So I went and spoke with him. I think he was just doing it to make me feel better. And he was like, “I can take a look. It’s all about whether I can reach your ovaries. I’m telling you, I’m most likely can’t. And your hormones are not going to be where they’re at while you’re pregnant.” But to make me feel better, he made the appointment for me to go in to see if he could reach my ovaries. I think he was just doing it to appease me. Which I appreciated, but obviously that didn’t happen.

Basically, my oncologist told me they’re not 100% sure how it affects fertility. They have had many, many women get pregnant after the chemo that I was on. It’s happened naturally. Some have had to do IVF. They don’t know if it’s because of the chemo or not. So it’s still a concern of mine. I tried to take my focus off that for a while, since there wasn’t anything I could actively do about it. And even after I had delivered my baby, I asked how long it would take before I could preserve some eggs. And the fertility doctor told me it would take at least two months for my uterus to shrink back down and for the hormones to be where they’re at before we could retrieve eggs. I wasn’t going to wait another two months on top of that, and my oncologist was highly against that as well. So we went ahead with treatment and just crossing our fingers for the next future child in our lives.

The factors that weighed on my treatment decision making

One of my factors was infertility, and another was having an ostomy bag. So the doctor said that normally, even with those concerns, she treats patients right away with chemo. So I was on chemotherapy. It’s a combination of three different chemo drugs. It’s actually mainly used for late-stage cancers and pancreatic cancer as well. Even though I was stage two, she wanted to attack it with the most aggressive chemo, so that we wouldn’t have to look down the route of radiation or surgery. I was petrified because I heard the side effects are life-altering, and obviously, that really affects infertility. And it puts you into menopause.

They say surgery isn’t always the first choice with rectal cancer because of where the tumor is. So it’s there’s a difference between rectal and colon cancer. So obviously, if it’s up in your colon, they can go in and resect that. And it’s easier to do in your rectum. You’re getting down to like the anal sphincter. And it gets very, very complicated. And a lot of the time, you can end up with a permanent colostomy bag. So they always try to avoid that.

First, they see if they can just knock it out with chemo.

My treatment plan

I did eight treatments of chemo. It was supposed to be every other week for four months. It ended up being a long five and a half months.

At first, it started as a six-hour day. In my first couple of sessions, I was like, “This is a piece of cake. I could do this.” I didn’t feel horrible. That was the first two sessions. I was just getting a headache. I was very fatigued. Obviously, no hair loss yet or anything like that. I had AD nausea. A lot. And then the third session came. And the fourth. And it just it got harder and harder. My body was fighting it.

They had to delay the third or fourth treatment, which is why it ended up going from four months to five and a half months. There were a couple of sessions that I couldn’t do because they always check your blood count beforehand, and I was found to be severely neutropenic, so they had to hold off until they could get my levels back up. And that’s when they started giving me an injection to help with the neutropenia.

There are also side effects. You get a ton of bone pain, which is like the weirdest feeling in the world. And then by the fourth or fifth treatment, I started having some severe allergic reactions. It was a full anaphylactic reaction from the one chemo drug, and they basically told me it was too early for me to have those. Usually it’s not until the last treatment that it happens to people.

So I think it was the fifth treatment. And once that happens, they have to do what’s called a desensitization and basically run the chemo over a very, very long period of time. So I was in that chair for at least 12 hours every treatment since then. It was an anaphylactic reaction, where it started as a tickle in my throat, coughing, and bronchospasm. And then I couldn’t breathe. So, in addition to it taking 12 hours, they also had to start basically drowning me in Benadryl and steroids and fluids. So another huge side effect I actually got was weight gain. And the steroids they give you will result in what they call moonface. So I didn’t feel like myself.

I lost 90% of my hair. I couldn’t make the move and shave it. People are so brave. I just kept what was there and just threw it on top of my head and put headbands on. Now my hair is growing in quickly.

The other side effect that I had was pretty significant neuropathy. Thankfully, it’s almost 100% better now. I had it in my hands during treatment. It went away when I stopped, but it stayed in my feet. So the worst of it is when I wake up in the morning, it hurts to walk. I would limp, I would get more numbness and weakness with the neuropathy, and less of the burning. Some people get that burning sensation. I didn’t really get that. And then the other side effect that I got was the cold sensitivity with the one chemo. So it would last about an hour until a couple of days before my next treatment. I wouldn’t be able to drink or eat anything cold. If I were to touch and pull something out of the freezer without gloves on, it would feel like pins and needles to the ninth degree. It was awful.

Obviously, there’s also joint pain. I actually still have aches. And then I would get really bad stomach pains as well when I would have to use the bathroom. And another GI symptom I got was diarrhea. And then I was also throwing up only at the last treatment.

There are probably some side effects I’m forgetting. But those were the worst ones, the ones that stick with me.

Being a new mom while navigating cancer

It was my first time being a mother, so I really leaned on my support system. This was my whole family, my husband’s family, and my friends I was in contact with.

The thing that I did the most to create some sense of normalcy was just going on walks. We live right by the beach. It’s beautiful here. I just felt like when I would go out for a walk, get some fresh air, everything just felt better. That’s like my happy place.

I didn’t 100% limit myself to everything. I still went to social events. I did everything that I still could do that a new mom would do. I would take her to music classes. This would all be obviously when I was feeling okay, it would usually be during the week I was off chemo. And then the week that I was on chemo, I would give myself time to rest and just sit at home with her and have my mom or sister over.

So I think it was very important for me to still live basically a normal life.

The cancer is gone

My last chemo day was in December, right before Christmas. I was so happy.

That was a rough day in itself. But my friend works where I was getting treatment, and she set up the whole room, decorated the whole room for me. She and my mom did it. It was so cute. So it was a great day. And then in October, a couple of months before that, I had a follow-up scope just to kind of see what the tumor looked like. And at that time, it had shrunk down to almost nothing. So I felt very, very positive about these last remaining treatments. I was nervous too, though.

In December, I finished chemo, and then on January 2nd, I had my follow-up scope to see if the tumor was still there. I went up to New York. My husband stayed home with my daughter, and I brought my parents to New York. We went to go see the tree. It was a nice little day. And then we found out that my tumor was gone. And it was the most relieving feeling in the entire world.

Again, they couldn’t 100% confirm it at the time because they still had to biopsy what was there. But the doctor basically told me, “This is scar tissue. I’m almost sure of it. I just have to biopsy it.” And then I got the results the next day, and I was in remission. And it was like the best feeling ever. I felt over the moon.

So for monitoring, I go every 3 to 4 months for flex sigmoidoscopies and for MRIs. I had a follow-up in April for both. I had an MRI and a scope. Everything was good. And then every year I have to get a full colonoscopy. So I did just get that in June, at the end of June, and everything looked great. So my next MRI is in a week from today. And then I get a scope following that as well. So it’s every 3 to 4 months.

They just watch me very very closely. They call it “wait and watch.” And so far so good. Obviously, I get so much anxiety with those. But I feel like staying positive has helped me so much this whole journey.

My lifestyle has completely changed

I was a night shift nurse. I always knew it was bad for you working nights. Now, I won’t ever risk doing that again. My doctor agrees. That’s why when I go back to work, I’m going to the day shift. The doctor said that the night shift is detrimental to your health, to your hormones, everything. So I feel like I’ve had to shift my whole mindset.

I don’t know what caused this, you know? So I have changed a lot of aspects of my life. I’ve made so many changes in my home of things that I put on my body daily. I do toxin free. I use those apps and I scan everything to make sure there’s nothing harmful in the products. The cookware that we use. We changed all that out. I changed all my cleaning supplies. I changed my body wash, everything. And now I’m also super vigilant about what I give my daughter as well. We use glass bottles for her milk.

Before cancer, I was the type of person who went, “Who cares? What is that really going to do to me?” I would burn these terrible candles all the time. And someone said to me, I think it was my sister. “Those are really bad for you.” And I was like, “I can’t not have a candle, I don’t care.” Well, my mentality has completely changed about all of that now.

I try not to go overboard with it, though. I try to find a fine line between that and not caring at all. We can’t detox from every single thing in this world. So I just try to find the most important things.

I also used to drink alcohol a lot. In my 20s, I would go out a ton. Obviously, since being a mom, I don’t really do much anymore. But that has changed drastically as well. I really don’t drink alcohol anymore.

I will say that I think it’s important to still live your life and do things that make you happy. So if I’m out to dinner and I want a glass of wine, I’m going to have a glass of wine. I don’t really enjoy things the way that I used to, but I’m also fine with it because it’s giving me peace of mind.

What I want others to know

Stay positive. It’s so much easier said than done. But I swear, the fact that I stayed so positive is what got me through it.

I also know that it’s my daughter who got me through it, because I truly believe if I were diagnosed and I didn’t have her, if I hadn’t been pregnant, I would not have handled it as well as I did. So for anyone who is going through this who’s a new mom, I can especially relate to you. Just know that you can do it for your kids. Your kids are everything. And my daughters and my husband are what got me through it. If you don’t have kids, then whoever that most important person is in your life, do it for them and for yourself.

Listen to your body, try to do things that make you feel as normal as you can. Again, that’s what got me through it.

I have a friend who was diagnosed at the same time. I met her over social media, and she had the same cancer I did, but it was stage 4. Everyone hears “stage 4,” and they freak out. It’s not a death sentence anymore. You know, our medicine and research are so far along now that there’s so much hope for everyone with these diagnoses. So there’s always hope.

Thank you for sharing your story, Ali!

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“Are you a smoker?” Ashley’s Stage 4 HER2+ Lung Cancer Story Challenges the Stigma

Post author By Chris Sanchez
Post date October 2, 2025
No Comments on “Are you a smoker?” Ashley’s Stage 4 HER2+ Lung Cancer Story Challenges the Stigma

October 2, 2025

“Are you a smoker?” Ashley’s Stage 4 HER2+ Lung Cancer Story Challenges the Stigma

Ashley was diagnosed with stage 4 HER2+ lung cancer in August 2023. At 32, she was enjoying an active, healthy life, practicing yoga, hiking, and learning to ski, when she began to experience subtle but ominous symptoms. Over several months, she began to struggle with fatigue, breathlessness, and back pain. She went to see several doctors, but they thought she had bronchitis or musculoskeletal issues, mostly because she had no history of smoking.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

The stigma surrounding lung cancer often links it to smoking, which can lead to delayed diagnoses in non-smokers like Ashley. She was asked time and again about her smoking history, and learned to emphasize that lung cancer isn’t only something that smokers get. Eventually, thanks to her physical therapist’s persistent advocacy, she ended up having an MRI that revealed that cancer was at the root of her symptoms. Later on, she had a bone biopsy, which confirmed that she had stage 4 HER2+ lung cancer. (Editor’s Note: HER2, short for Human Epidermal Growth Factor Receptor 2, is a protein that regulates cell functions, including cell growth and repair. HER2 mutations tend to be more common in non-small cell lung cancer patients with little to no smoking history.)

Ashley’s experience highlights the challenges young cancer patients, especially women, can face. She was hit hard by the diagnosis, and it was all the more agonizing because she and her husband had to shift abruptly from thinking about starting a family to confronting the reality of lifelong treatment for lung cancer. But in the face of these challenges, Ashley’s spirit was buoyed by her support system, her abiding love for teaching, and the quickly evolving landscape of targeted therapies to treat cancer.

The HER2-targeted therapy Ashley is currently on, which was approved shortly before she needed it, has proven effective in controlling stage 4 HER2+ lung cancer. Although she sometimes struggles to deal with tough side effects like fatigue and nausea, Ashley is still very thankful for the quality of life her treatment affords her. She also wants to emphasize that palliative care isn’t necessarily the same thing as end-of-life care; it’s about enhancing one’s comfort and well-being alongside active treatment for cancer.

Ashley’s story is a reminder of the importance of self-advocacy, the need to challenge lung cancer stigma, and the hope that advances in medical research offer. Watch her video and scroll down to read her interview transcript for more about:

How she lived an active and healthy life, yet was diagnosed with stage 4 HER2+ lung cancer — how her story challenges the stigma
Why palliative care isn’t just about end-of-life
How Ashley’s symptoms went unnoticed for so long
The question she’s tired of hearing: “Are you a smoker?” Her story reveals why it matters
From teacher to lung cancer advocate — Ashley’s resilience is truly inspiring

Name: Ashley C.
Age at Diagnosis:
- 32
Diagnosis:
- Non-Small Cell Lung Cancer (NSCLC)
Stage:
- Stage 4
Mutation:
- HER2
Symptoms:
- Fatigue
- Breathlessness
- Persistent back pain
- Multiple rounds of bronchitis
Treatments:
- Chemotherapy
- Targeted therapy

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

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

Transcript of Ashley’s Interview

Hello, I’m Ashley
When I first noticed something was wrong
I have no smoking history
What happened next
The moment everything changed
My family’s history of cancer led me to a new cancer center
How I learned about my biomarker
I trust my doctor’s treatment decision
What life has been like on a targeted therapy
I’m living my life in three-week increments
The decision to have biological children was taken from me
My message of hope
What I want others to know

Hello, I’m Ashley

My name is Ashley. I have stage 4 non-small cell lung cancer. I was diagnosed in August of 2023.

My husband, in particular, tells me all the time that one of the things he loves about me is my compassion and empathy for others. It’s partly why I’m a teacher. I really care about others and helping my community. And I think that’s what all my friends and family like about me.

When I first noticed something was wrong

I’ve always been a relatively healthy person. I remember in the winter of 2023, I got really sick for like a month, and that was out of the norm for me. And eventually, I went to the doctor because I was just having trouble breathing. Going upstairs was difficult. And I was in really, really good shape at the time. So that was just weird to me. And they were like, Oh, yeah, like no pneumonia. We took an X-ray. It’s clear. It’s probably just bronchitis. Take some antibiotics. Here’s an inhaler. You’ll be fine. And then it got a little bit better. And then, in April, the same thing happened, where I just got sick for about a month. Really out of breath. It was very out of the norm for me. Even if I got a cold, usually I would be over it very quickly. And then around the same time, I was sitting at work, and I just readjusted myself, and I felt this weird, like, popping sensation in my back. And then over the next few days, it just felt like I had thrown my back out or like there was a muscle issue. Eventually, I went to the doctor and got it checked out. And because I was a pretty active person, I did yoga multiple times a week, I went hiking, and I was learning how to ski. They just figured I had just done something to mess up my back. And they said, Go to PT and get back to us if anything changes.

And while I was doing physical therapy, it just progressively got worse, to the point where we weren’t even able to actually like get into doing stretches or exercises because every appointment was just about sort of managing pain. And it was my physical therapist who finally reached out to my primary care doctor, saying, We need to do some more imaging because this is not normal. I’ve never seen someone my age in my condition without a really good explanation as to why I was experiencing the amount of pain I was in. And so that was when that kind of prompted my primary care to say, “Alright, well, let’s at least get an MRI, and we’ll set you up with a neurosurgeon because they deal with facts, and we’ll take it from there.” And that’s when it started to snowball into not necessarily a neurosurgery issue, but an oncology issue. It was pretty quick, right after my initial MRI, that the radiologist reached out to my doctor’s office, saying, “This is serious. This isn’t just an injury. This is something that needs to be biopsied and dealt with quickly.” That was the initial result before I underwent all sorts of tests. It was like they knew it was probably cancer, but what type of cancer? Everybody was really confused at that point. And I just looked everywhere because nobody seemed to have a great explanation as to why, without many other symptoms. I had already had signs of bone metastases.

I have no smoking history

They looked at breast cancer. I had mammograms done. They were looking at different blood disorders like leukemia, lymphoma, and things like that. They were doing tests for all of that. They weren’t looking for lung cancer. I didn’t have a CT scan until after they had already known it was lung cancer. And then in my initial diagnosis, I remember being asked multiple times by my oncologist, So you didn’t smoke, you weren’t a smoker. And it was pretty frustrating. And I remember my husband and I going, “No, I’m not a smoker. I don’t know how many times I can tell you.” They almost didn’t believe me at first. My parents were smokers, but they never smoked in the house or the car with us. It’s not like I was exposed to all this secondhand smoke either. I had pretty much the same exposure most people do, which is occasionally the people in your life are smokers, but not anything significant day in and day out.

What happened next

I was actually in the car going away for the weekend because it was my birthday. So we had planned a long weekend with some friends. I got a call from my primary care office, and the doctor said, “This is serious. They found a tumor.” Generally, he said, “In my experience, when we see this kind of imaging, it’s cancer somewhere else. So we need to find that.” And he was great because he reached out to the oncology practice associated with my primary office and said, “I want her to have an appointment next week.” He ordered a bunch of blood tests. In the meantime, he told me, “If you can get up to date on preventative vaccines and things like that, regardless of where this goes, I want you to be protected against things.” He put things in motion very quickly. I was very thankful for that. Once we met with my first oncologist, she had ordered a biopsy of the tumor that they had found in my back. And then other things like bone scans, blood tests, things like that. The biopsy of my bones was what revealed that it was lung cancer.

The bone biopsy was the hardest part of this whole process. It’s probably one of the worst medical procedures I’ve had in this whole process. Thinking back to it gets me all flustered again because it was a really sort of traumatic day. I had no idea how difficult it was going to be. And up until this point, I had been really healthy. It was the first time I’d ever really been in the hospital for a procedure. At that point, we didn’t know what to expect. I just wasn’t thinking that it was going to be a big deal. Neither was my husband. And I remember calling him afterwards and telling him, “You need to come back now.” And now with that experience, he’s pretty much always with me because we just never wanted to experience that again.

I ended up with, I think, a total of seven vertebrae that have tumors in them. I have a fractured rib that just won’t heal because of all of this. The crazy part is I only had one tumor in my right lung and a couple of nodules in my left lung. It had already spread to other parts of my body. I was lucky that it was just bones and lungs. Two years later, it’s still just bones and lungs, which is great. I’ve never had issues with my liver or my brain, which are two common places for lung cancer to spread. I have had more nodules pop up in both lungs. But for the most part, it’s been pretty well controlled. The confusing part for me was that I had chest X-rays done. And they didn’t see it, but I guess my tumor was small enough. It’s only when people have really large tumors and lung cancer that X-rays pick them up, which was not something I knew. They said, “Your tumor is small enough that a few months ago it was probably even smaller. We’re not surprised they didn’t see it on an X-ray. That was my big question, I asked, “I had a chest X-ray four months ago. Wouldn’t you have seen it?” And they said, “Not necessarily. Your tumor is really not that big.”

“You’re going in, you’re doing the right thing. You’re getting looked at. And the easiest, most basic test isn’t sensitive enough to pick it up. I’m sure if you looked at it knowing where the tumor was, I’m sure you know, knowing what we know now, you might be able to see it, but if you’re not looking for it, I guess it’s just not that obvious.”

The moment everything changed

I laugh because I feel like the media, like movies and TV shows, has put this perception in our head that, you get to a moment where you’re told, “Okay, you have cancer,” and it’s the first time you’ve ever heard it. In my case, it was more like drips and drabs. After my first MRI, we were pretty sure that I had cancer. It was more like, What kind of cancer? After the bone biopsy, that was when I knew it was lung cancer, because the bone biopsy had shown it. Basically, they can tell where the primary tumor is. And I actually got that through MyChart. And I remember I was sitting, I was out on vacation with my husband and several of our friends, and I got the notification on my phone. And we were out at dinner. And that’s when I pulled up the report and saw what the report said, took a deep breath, put my phone away, and then just tried to continue with dinner and having fun. And later that week, we went in for an appointment. And that’s when they started to explain what it all meant. I didn’t realize the full severity of my diagnosis until about a month later, when I was getting a second opinion at Dana-Farber. And my oncologist really kind of laid it out for me that my cancer wasn’t curable. It was very serious. That, although it would probably not be my case, because I was young and I was otherwise healthy.

It’s a 6 to 12-month survival type diagnosis. He was confident that that wasn’t going to be my situation. But, he’s also very much a data-driven provider. He said, “I can’t make any guarantees. This is just what we see in the data. But the vast majority of people are much older than you. They’re smokers. They have other health issues. You’re young, you’re not a smoker. The rest of you is perfectly healthy. I have faith that we’ll be able to give you a lot more time.” But we were really angry that this severity wasn’t stressed to us by my first oncologist because they were they were still talking to me about wanting to have kids, wanting to freeze eggs, things like that, which sends the message of, you’re going to get beyond this. There’s going to be a day after treatment. Which is not the case. I mean, hopefully, there’s some breakthrough, but realistically, that’s not what’s going to happen. That was really tough. It was kind of sort of like drips and drabs of learning I had cancer and what my diagnosis meant.

My family’s history of cancer led me to a new cancer center

My father had gotten care at Dana-Farber, and they were amazing. And my sister in law had breast cancer, and she had gotten care at Dana-Farber too. So we already knew several people who had gone there. And we always knew that, at a minimum, we wanted a second opinion there. We were willing to give my local hospital a chance. And we also didn’t want to delay initial treatments or anything like that. I did start chemo locally. But then, once we kind of realized that they were downplaying my diagnosis, we decided to make the switch. For anyone who is reasonably close to Dana-Farber, I always say call them because they know how difficult it is with insurance and scheduling, and appointments. They know how challenging that can all be. And they do work hard to streamline it. All I had to do was make a phone call, and they took down my basic information and who my doctor was. And next thing I know, they’re calling me and they asked, “ Do you have an appointment on this day?” And I was like, “Do I have to do anything else? Do I have to send you things?” They went, “No, no, no, we got it.” They did all the heavy lifting. And now to this day, whenever I have scans, appointments, anything like that, they’re great at scheduling things. And really doing a lot of the heavy lifting. It was definitely more challenging. At first, before I was getting my care there because I was having to do a lot of that. I was having to do a lot of calling and follow-ups, and trying to make all the appointments work, and making sure I was getting to the lab on time, and making sure I was getting this done in time.

Now that I’m in the Dana-Farber system, they just do a great job at scheduling all that. I’m thankful that I’m part of a healthcare organization that tries to put patients first and helps us navigate that easily.

How I learned about my biomarker

They did a blood biopsy pretty much right away once they knew it was lung cancer. And then they also once took a biopsy of my actual tumor. They did additional testing because I guess sometimes there are some tests that on the physical tumor, it’s a little bit more sensitive than the blood biopsy. I saw that it was HER2, but at my time of diagnosis, there were no approved treatments for lung cancer. This will be good in the future, either for clinical trials or if things do get approved. About four months before I saw progression on my first line of treatment, the FDA approved a HER2-targeted therapy. So I’ve been on that now for almost a year. It’ll be a year in August. And I still have no progression. We’re hoping that more HER2 treatments get approved before I see progression. Unfortunately, because of where my tumors are, it’s hard to measure tumor growth in bones. I’m just not a great candidate for clinical trials, because with clinical trials, you need to be able to really measure bone growth, our tumor growth. And in bones, it’s not the same as if it’s in your liver or your brain or things like that. So while I’m thankful I don’t have tumors there, it is also nerve-racking because I’m worried about progression without other HER2-targeted treatments available.

I trust my doctor’s treatment decision

It’s crazy how fast the cancer space can change as new drugs come online. My current treatment, which is a targeted therapy for HER2, is now being considered part of the first-line treatment. Whereas, for me, it’s been my second line. My first line was a more traditional chemotherapy. And I did four rounds of heavy chemo before my body started showing signs of not being able to handle it anymore. I was having a lot of liver enzyme issues and things like that. We dropped one of the drugs I was on and then just stayed on basically a maintenance chemo dose, and that was able to keep me progression-free for about a year; that was my whole treatment regimen. We made the switch to the targeted therapy when I had two PET scans in a row, six weeks apart, showing a lot more activity, not just in the bone metastases, but there were also multiple nodules popping up in my lungs. And that’s when we made the decision. My oncologist has been really good about being like, “If we’re just seeing a teeny tiny bit, we can probably hold off switching.” He always uses the expression, we only have so many tools in the toolbox. So we want to use all the tools till they’re not useful anymore. We have talked about radiation on individual spots, particularly the bone metastases. But again, we’re holding off on that because you can only do so much radiation. And then, through all of this, I did find out I have a rare genetic disorder that makes me predisposed to cancer. Radiation is very highly discouraged for individuals with this genetic disorder. It’s kind of like a last resort option. Because I’m at just such an elevated risk for developing additional cancers, we don’t want to set that off.

What life has been like on a targeted therapy

I’m going into my 18th round in a couple of weeks of my targeted therapy. I did have to take a break for a while because I was experiencing some lung inflammation, which is a known side effect of this particular drug. And we were trying to suss out whether it was due to the drug or just due to being sick and having lung cancer. My lungs are just more apt to experience inflammation. Eventually, we determined that it was more likely than not just being sick and my body trying to heal, and not the drug. Luckily, that was proven to be true. Because if it were the drug, then I wouldn’t be able to continue on the drug, because the lung inflammation is such a serious issue. The guidance is that once you experience this kind of inflammation, you have to discontinue the treatment. I think there’s a perception that because it’s targeted, it’s somehow going to be easier. And it’s actually been a really challenging drug to be on.

I’ve had multiple dose reductions. And I’ve also had to add in a bunch of extra things like extra fluids and stronger nausea medicines than I had been taking before. That’s been challenging. I’ve had to take off a little bit more work after treatments than I had in the past. Because I’m just very fatigued and nauseous. And that’s been challenging. Luckily, I have awesome nurses who work hard to make sure I’m in the best shape possible, leaving there and then. I now work with a palliative care team that has been good about adjusting medications and finding sort of different routines for me to help make that post-treatment week a little bit easier. But overall, I’m grateful that this drug was approved when it was, because had it not been, I would have had to go to a harsher, older chemo that is less effective. And I might have been in the position where I might have had to stop working or things like that because, as difficult as this drug is, I know it’s not as difficult as some of those older ones.

I’m living my life in three-week increments

Sometimes you get invited to things and you have to tell people, “Hey, it’s really going to depend on where my treatment is and if I’m feeling up to it. And I’m really not going to know until we get a lot closer.” And that’s been really challenging, I think, to kind of get used to being comfortable saying that to people. Totally unrelated. I happened to change jobs right when I was getting my cancer diagnosis. And I always joked, “Who quits their job and then finds out they have cancer?” And it actually has turned out to be a great thing. Not that I didn’t love my current or my former teaching position. But the position I’m in now is so great, and my administration and school district are just amazing at making sure I have everything I need and the time off that I need. So professionally, that was just like a change unrelated to my cancer, but it has actually been a great move for me. They’re just very open and supportive of everything I need. Professionally, I think I need to get used to taking time off. I was just not someone who ever really took a lot of time off. So being comfortable doing that and not feeling guilty and not feeling like I’m letting my students down by being absent has been a big growth opportunity for me. And that was really challenging at first to be comfortable taking the time that I needed.

The decision to have biological children was taken from me

I was getting to the point where even things like going to the bathroom were difficult because I was just in that much pain. So the idea of delaying treatment to freeze eggs or embryos — I quickly was just like, “No, this is crazy. If we get on the other side of this, there’s always adoption and foster care and other options out there.” When I realized, though, that this is going to be sort of a lifelong treatment, that was hard because even though we had gone back and forth about having kids and hadn’t really made a decision yet, it then felt like the decision was taken from us, but it still does make me sad sometimes to know that I won’t have that opportunity. It gets exhausting sometimes. I find that I’ll go several months where I’m feeling good, and life is good, life is great. And then usually it’s around a week when treatment hits me really hard. I’ll get pretty down. And, you have those thoughts of, “How can I keep doing this?” I think mental health is a huge part of treatment. And I’m lucky that through my treatment at Dana-Farber, I’m able to get mental health counseling.

My message of hope

My mom passed away from cancer when I was a toddler. And when I talked to family about what she went through, the drugs were so harsh.

The fact that we’re living in an age where you can have these really serious diagnoses and still have a quality of life. And still work, still participate in your hobbies and things like that, that to me is amazing. And that’s what keeps me going. I remember all the people that we’ve lost in the past who weren’t able to have the quality of life that I have. Because the drugs have just gotten so much better, and treatments have just continued to improve every single day. So even if I never get cured, I’m hopeful that the next drug that comes on the market is going to be that much more effective and that much more able to be easily tolerated and will give me that much better quality of life.

What I want others to know

While you’re young and healthy, do the things that you want to do. If you want to go visit a country, figure out how to make it happen. If there’s a restaurant you’ve always wanted to go to, save up the money and go to the restaurant. Don’t wait because you might be too incapacitated to do that. The only other big thing in my story is just through the testing that we had done. And then my personal family history of cancer. I found out I have a genetic condition called Li-Fraumeni syndrome. And through that, I’ve told people that it’s not normal for there to be multiple people in your family tree having cancer. And if that’s the case, even if you are okay, I encourage people to talk to their doctors to look into genetic testing. Because if it’s not, it’s not normal to get cancer young, and it’s not normal to have multiple aunts, uncles, grandparents, and parents with cancer. If you’re going through your family tree and several people have had cancer, it’s definitely worth the conversation. Because even compared to ten years ago, what they know about cancer genetics has definitely grown. And if I had known that I had had this genetic condition years ago, I would have been getting screenings that would have been able to catch my cancer.

Thank you for sharing your story, Ashley!

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From Persistent Cough to Stage 4 Melanoma: Jennifer’s Story of Taking One Day at a Time

Post author By Chris Sanchez
Post date September 28, 2025
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From Persistent Cough to Stage 4 Melanoma: Jennifer’s Story of Taking One Day at a Time

September 28, 2025

Jennifer was recently diagnosed and treated for stage 4 melanoma that had spread to one of her lungs. Looking back, she recalls the months leading up to her diagnosis with a mix of clarity and disbelief. It all started with a lingering cough after a bout of flu in April. The cough interrupted her nights, worried her family, and slowly escalated to chest pain. She shrugged it off as a seasonal allergy until her aunt, a melanoma survivor, urged her to get a chest X-ray. That step was pivotal. It led to the discovery of a large mass and a life-changing diagnosis of metastatic cancer.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Hearing those words triggered a flood of fears, mostly about her husband and two young daughters, and the thought of not being there for them as they grew up. However, Jennifer quickly learned to surround herself with a good care team and to access accurate information. Instead of spiraling through online worst-case scenarios, she leaned on her doctors, who immediately set her up for scans, immunotherapy, and ultimately, an emergency surgery that removed her entire left lung and part of the pericardium. (Editor’s Note: The pericardium is the protective, fluid-filled sac that surrounds the heart.) Her voice was impacted, too, because the tumor had intertwined with her vocal cord, but she began exploring treatment options with patience and optimism.

Throughout this process, Jennifer has discovered that managing mental health is just as important as the physical side of cancer care. She allows herself to cry, openly shares her fears with her husband, and is very grateful for her extensive family support system. Leaning on others hasn’t come naturally to her, but she now sees it as a powerful act of self-care.

Prevention has also become an anchor in Jennifer’s life. Growing up, she spent years in the sun without protection, even using tanning oils during her teens. After her first brush with melanoma in 2021, she became vigilant, wearing hats, sunblock, and UV-blocking shirts, and making sure her daughters are always protected. She hopes others will take sun safety and the risk of skin cancer seriously long before it becomes a necessity.

Looking ahead, Jennifer embraces each day as a chance to grow stronger. She has regular scans done, continues immunotherapy, and plans fun family activities that remind her that staying hopeful matters. She urges others to understand that a stage 4 melanoma diagnosis is frightening, but it can’t erase who you are or overcome the love that surrounds you.

Watch Jennifer’s video, and scroll down to read the transcript of her interview. You’ll learn more about her heartening story:

How a simple chest X-ray changed her life forever
How Jennifer parented two little kids while navigating stage 4 melanoma
What she wishes she’d known about sun safety in her 20s
The emotional impact of learning to rely on others for support
How Jennifer continues to find hope, strength, and joy every day

Name: Jennifer M.
Age at Diagnosis:
- 38
Diagnosis:
- Melanoma
Staging:
- Stage 4
Symptoms:
- Persistent cough
- Body and chest aches and pains
- Night sweats
- Fatigue
Treatments:
- Immunotherapy
- Surgeries: lung resection, pericardiectomy

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 Jennifer’s Interview

Hi, I’m Jennifer
When I first felt like something was “off”
Looking back, I had other symptoms
The moment everything changed
Finding the right care team
My diagnosis progressed quickly
We had to do surgery immediately
Navigating the emotions of going through emergency surgery
I only have one lung now
How the surgery impacted my voice
How I’m adjusting to having one lung
I’ve dealt with melanoma before
My family has a history of melanoma
What I want people to know

Hi, I’m Jennifer

I’m 39 years old and I was diagnosed with stage four metastatic melanoma on July 1st, right before my 39th birthday.

When I first felt like something was “off”

This past April, I got the flu. I went to my family doctor, and she said, “The flu in April. How does that happen?” But I did have the flu, and I was treated for it.

Months went by, and I still had this persistent cough. I would have these coughing fits. I would wake up in the middle of the night, constantly coughing. I would wake up my husband and my daughter, and I would be like, “What is going on? Why do I have this cough?”

So I thought that it was maybe just a cough from the flu. I ended up going to my family doctor, and some tests were done. I didn’t have the flu or strep throat or anything like that. We just chalked it up to seasonal allergies. So I left, I bought some Claritin, and hoped that that would resolve the issue.

Well, as time went on, I still had the cough, and then at that point, I was starting to get some chest pain. So, I was at a family barbecue and my aunt, a melanoma survivor, said, “You know, Jen, I had a conversation with my dermatologist, and any time that someone has melanoma or a history of melanoma, a lot of times they would recommend a chest X-ray. Why don’t you get a chest X-ray and see what happens, just to rule out anything significant?” That was at the end of June, July 1st. I called my doctor right away. I said, “Why do I still have this cough? Can I have a chest X-ray, please? Let’s find out what this problem is.”

It was the next day. My doctor called me up. She said that the X-ray came back, and it was abnormal, and she wanted to order a CT scan right away. I freaked out. The next day, fortunately, I was able to get in for a CT scan. At that point, she brought me right into the office, and that’s when she said that they had found a mass. It was very large already, 11.4cm. I was like, “How did that happen? How did that grow inside of me? For a long time, and I didn’t know it?” Everything happened so quickly. So, we had the X-ray first. The next day was the CT scan, and then they referred me to MD Anderson for treatment. “You have an appointment next Tuesday. You’re going to go in for a consult, and then they’re going to basically take over.”

Looking back, I had other symptoms

Looking back, I feel like I should have noticed other symptoms.

I was definitely tired. I was more tired than usual. My daughter had just finished school at that point, and I just felt tired from looking back. It was her first year of preschool, so I felt tired. She was in school. I had my little one at home, and I would get in this routine where my husband would come home and I’d be on the couch watching TV. So I wasn’t getting out as much as I normally do.

I’m always on. I’m always on the go. Always outside. I took my first daughter out shopping and just out for walks and things like that. And with my second daughter, I just felt really tired, and I just chalked it up to being a tired mom. I didn’t think anything of it. But now looking back, I should have known that my body was telling me that something was going on. Aside from the cough, I did have slight chest pain around my heart. And that came a little bit later. But it wasn’t normal. I wish I had done things differently, but I can’t think that way because what’s done is done at this point.

The moment everything changed

Right away, you just think, “How long do I have?” You know you have to stay off Google because when you go on Google, you read the words and immediately think, “I don’t have much time left.” My immediate thought was, “Am I going to be able to see my daughters grow up? Is my husband going to have to raise them alone?”

Initially, that was the scariest part, trying to navigate the feelings of what their future might look like without me. But I went back to the doctors because they were just such a great team. They give you options, the different treatment plans, and it makes things a little bit easier to know that you have those options. And you try to read success stories about the different medications and what’s available to you.

Finding the right care team

The team of doctors there has been nothing short of amazing. I mean, I’m really blessed. Right away, they did an MRI of my brain. They did a PET scan. Fortunately, the MRI did come back clear, but the PET scan basically revealed what they had already seen in the CT scan. The melanoma had metastasized to my lung and was basically a huge mass taking over my entire left lung.

The thoracic surgeon that I met with, I can’t say enough good things about him. So aggressive, but in a good way. Not pushy. Smart. Just really brilliant. They all had a plan. There was a team of oncologists and pulmonologists. They had this plan, and they executed it very quickly.

My diagnosis progressed quickly

After those big tests were done, it was decided that I was going to go through with immunotherapy. So, I had my first round of immunotherapy on July 28th. Only a couple of weeks had gone by between the time that I had the X-ray and the immunotherapy.

I had my first round, and the following day, a nurse called and asked how I was doing. And I was really out of breath and having a hard time speaking, and she went, “You don’t sound too good.” And I said, “Yeah, I was trying to take a nap and I’m just having a hard time breathing. She advised me to go to the emergency room.

So I did, and my heart rate was very high. They saw that something just wasn’t right. So there were a couple of different plans. They were going to do a couple of different procedures to maybe open up my airway a little bit more. I had a thoracentesis to remove some fluid in my back, and there was no relief with any of that.

That Friday, my doctor came into my hospital room. He said, “We have to get this thing out now. We can’t wait any longer.”

We had to do surgery immediately

The initial plan was to go through with the immunotherapy to shrink the tumor, because it was just so large. They didn’t want to go in right away because it was like sitting on my diaphragm. It was intertwined with important nerves that they didn’t want to have to touch. So the plan was to go through the immunotherapy and then get some scans done and see if it’s shrunk, and then at that point remove it. But because I ended up in the ER, and because my heart rate was just so high and they couldn’t bring it down, they decided that they had to go in to remove it.

When the thoracic surgeon came in, he said, “This surgery is very hard, very complex. It’s a huge tumor. There’s a 10% chance that you might not make it. And that’s a very high number for surgery. We don’t like to see 10%. But if we don’t do the surgery, there’s a chance that you may not make it two more days.”

So I said, “Well, let’s do it, let’s remove it.” I had to call my husband, my mom, and my dad, and tell them there was a change of plans. “We have to have surgery tonight.”

Navigating the emotions of going through emergency surgery

My husband is very stoic. He put on this strong front and pretended that everything was fine. But I know that it was super hard for him. Just because, again, a life without our girls’ mother. Who wants to think like that? But that’s where we went. That’s where my mind went. And he saw how upset I was. But he was just so supportive. And I’m so grateful for him.

During this past month and a half, I’ve cried a lot. I’m super emotional about the whole situation. He just lets me cry, tells me it’s going to be okay, and pushes me to be positive. Anytime my mind goes to that dark place, he kind of brings me back and just tells me, “We’re going to be okay. We’re going to fight this, we’re going to beat it. You’re going to be here for a very long time.” So I’m grateful for his mindset. But yeah, it’s hard not to go to the dark place.

I only have one lung now

So they took out the whole lung. And the cancer was actually creeping up to my heart, so they actually had to take out the outer layer of the heart, too, the pericardium. That’s why my breathing was such a struggle, because it was aggressively moving up to my heart. That’s why they had to go in so quickly. To remove the lung and the tumor.

Once they got it all, I was told that my margins are clear, which is excellent. But there’s always that chance that there could be small cancer cells and fluids in there, and that it could come back. So the hardest part is being fearful of the future.

Moving forward, every three months, I’ll get PET scans to monitor me. And it’s going to be scary every time I have to go in, because I’m fearful of the cancer returning. But I’ll continue with immunotherapy, I believe, for up to a year for preventative purposes. And I’m all for that.

I’ll do whatever I have to do to make sure that this doesn’t come back.

How the surgery impacted my voice

Of course, before the surgery, the nurses and doctors come in and tell you about the risks of the surgery. And there are just so many things that could have gone wrong. Fortunately, none of them did. But when they were inside, they found that the tumor had wrapped itself, not only around the lung, but also around the nerves and all kinds of veins. I guess it was just intertwined. So they told me that they might have to cut a certain vein, artery, or nerve if it came down to it.

After the surgery, when I woke up and tried to talk, I was very raspy. And that’s understandable because they had tubes down my throat. But the doctor did let me know that, unfortunately, because the left vocal cord was wrapped around the tumor, they did have to sacrifice it. So he informed me that the left nerve was cut. But the right nerve was still fine. So basically, my voice actually sounds a lot better. It was really raspy and really low for the first couple of weeks.

But what’s going to happen is, because the left vocal cord is now paralyzed, I have several options. I can get an injection in my nerve of the vocal cord, and that will plump it up so the right one doesn’t have to do all the work. And that could temporarily give me my voice back. For a more permanent option, there are two surgeries I could go through that I’m researching and considering what I think is best. One involves inserting an implant behind the vocal cord. The other involves wrapping a good nerve around the bad nerve and moving my voice box.

I don’t know if I want to go through that right now. I’m going to try just the injection, the temporary fix, and see how that goes. And then maybe down the road, I’ll consider one of the two surgeries to hopefully restore my voice.

How I’m adjusting to having one lung

I mentioned before that I’ve always been like a go, go, go person. I’m very type A. I like to do everything myself. I’m very independent. If I can do something myself, I’m going to do it and not rely on someone else to do it for me. So I’ve just had to really shift my mind and lean on others. I’m grateful I have a wonderful support system.

I mentioned that I’m an only child, but my husband is one of six, and he has a huge family. His mom was one of 11, and his dad is one of six. So there are just tons of aunts and uncles and cousins. His siblings have just been so wonderful. They did a meal mail train and prepared meals for us. They sent gift cards. They came and watched our girls for us, babysat for us, gave them baths when I wasn’t here to do it for them. So just turning my mindset, you know, leaning on others and letting them help.

It’s been a challenge, but I’m doing it because they’re there and they want to help, so I’m so grateful for that. We couldn’t ask for a better support system.

Fortunately, I’m now kind of getting back in the swing of things. I’m getting outside more. The weather’s getting cooler. I can breathe again. So it’s nice to be able to start doing those things again that I used to do. It’s only been a few weeks, but I’m getting around, and every day I’m getting stronger.

I’ve dealt with melanoma before

2021 was a big year. In 2021, I got pregnant with my daughter. But after I had her, that’s when I went to the dermatologist for my regular follow-up, and a couple of spots were biopsied. I ended up having a basal cell on my forehead and a basal cell on my right arm removed. That was done right in the office. And then I had to go to Cooper Hospital. I had a melanoma spot on my chest, on my left breast. It was tiny, a small little spot. But if I scratched it by accident or got out of the shower, it would start to bleed. And the doctor said if a mole is bleeding or itchy, then that’s a sign that something isn’t right. So sure enough, that spot ended up being melanoma.

Once they removed the melanoma, I went for a follow-up, and all margins were clear. They did the genetic testing with that one as well. And after that, that was it. That was in So I continued with my regular follow-up with my dermatologist every six months. And then it went to a year. So at that point, it was annual visits with my dermatologist. But nothing since then had come up. So four years later, what happened was that the melanoma spot metastasized, and it went to my lung.

My family has a history of melanoma

Melanoma runs on my dad’s side. It was my dad’s sister who advised me to get the chest X-ray. It also runs on my mom’s side. So my mom has had melanoma. My aunt on my mom’s side has had melanoma, too. And then my other aunt and my grandfather have had it also.

I had genetic testing done because I was so worried about my daughters and whether this could be passed on to them. And there was a ton of mutations within the tumor when it was tested. But genetically speaking, the doctors said that it’s unlikely I could pass it on to them.

Of course, there are concerns. They have to be protected from the sun; they’re light-skinned. And of course, we’re going to take the necessary precautions for them. But genetically speaking, it doesn’t sound like that’s where it came from.

I spent my teenage years, my early 20s, up until probably my early 30s, not really protecting myself in the sun, laying out in baby oil, and going to tanning salons back in high school for prom. And I look back and I wish so much that I knew the effects of, you know, the sun, sun damage, UV rays, and all of that. I can’t change the past. But as soon as I found out back in 2021 that those spots were skin cancer, that changed everything. From then forward, I’ve never lain out in the sun. I always make sure that when I go out, I wear a hat and sunblock. It’s the same for my girls; I load them up with sunblock every time they go outside. I’m just taking the necessary steps going forward. That’s all I can do.

Those sun-protecting shirts aren’t very flattering, but at least I’m covered, you know. We do go outside, but we try to do a lot of indoor activities, just enjoy the colder months.

What I want people to know

Don’t let the diagnosis scare you too much. Obviously, when you hear the news that you have cancer, it’s very scary. Just try to focus on the fact that you have it now, and it can be addressed. I don’t want to say focus on the future because you really want to take it one day at a time. And I know that’s easier said than done. But if you want to be here and you want to live a long life, then hope for that and pray for that and wish for that.

I take things one day at a time. But I also like to plan. For example, I like to plan fun trips for the future, because I want to think that I’m still going to be here, you know? So just don’t let the cancer diagnosis define who you are. Be grateful that you know it’s there and do what you can to get yourself healthy again.

Thank you for sharing your story, Jennifer!

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Shattering Stereotypes: Jessica’s Stage 3 Rectal Cancer Experience at 29

Post author By Chris Sanchez
Post date September 27, 2025
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September 27, 2025

Shattering Stereotypes: Jessica’s Stage 3 Rectal Cancer Experience at 29 Through Self-Advocacy

Jessica was devastated when she found out that she had stage 3 rectal cancer in 2024, when she was just 29. Her experience challenges perceptions of what cancer looks like and helps redefine survivorship on her own terms.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Jessica’s story began in 2023 when she noticed unusual symptoms, including bright red blood in her stool and persistent abdominal pain. Doctors attributed her symptoms to irritable bowel syndrome, but she felt deep down that something wasn’t right. Armed with the knowledge that she had Lynch syndrome and a strong sense of self-awareness, she pushed for and ultimately got a colonoscopy that revealed a six-centimeter mass in her rectum. Her determination to advocate for herself likely saved her life. (Editor’s Note: Lynch syndrome is the most commonly inherited cancer syndrome. It increases a person’s risk for colorectal cancer.)

A striking aspect of Jessica’s experience with stage 3 rectal cancer is how she defies the typical “sick” stereotype far too often associated with cancer. She didn’t lose her hair, appear frail, or show any visible signs of illness. She credits immunotherapy, which she took through a clinical trial rather than traditional chemotherapy, for her well-being during treatment. Jessica’s body responded extraordinarily well to immunotherapy, with the mass disappearing entirely after just a few infusions. This alternative treatment not only preserved her physical health but also helped her maintain a sense of normalcy.

Jessica’s experience highlights the mental and emotional complexities of living with rectal cancer. From the anxiety of waiting for biopsy results to navigating survivorship, she learned for herself that the mental toll of cancer often outweighs the physical challenges. Her story emphasizes the importance of supportive relationships. She notes how her wife became a key part of her care team, and shares heartfelt moments when people in her life stepped up in meaningful and sometimes unexpected ways.

Survivorship isn’t a return to normal life for Jessica. It’s a brand-new chapter filled with intentional living. She now prioritizes experiences that bring her joy, like attending women’s soccer games and spending time in nature. Jessica’s philosophy is simple yet profound: live with purpose, advocate fiercely for your health, and cherish the connections that truly matter.

Watch Jessica’s video and scroll down to read her interview transcript. You’ll delve into her story:

Cancer doesn’t always look like what we expect. See how her health and appearance defied stereotypes
Self-advocacy can be life-saving. Jessica’s story shows how you should trust your intuition and speak up when something feels off
Find out how immunotherapy can be a powerful alternative to chemotherapy
Learn how mental health support is crucial during both active treatment and survivorship
Jessica’s strong relationships with her wife, friends, and family prove that authentic connections grow stronger through vulnerability and support

Name: Jessica A.
Age at Diagnosis:
- 29
Diagnosis:
- Rectal Cancer
Staging:
- Stage 3
Symptoms:
- Changes in bowel movements
- Blood in stool
- Abdominal pain
- Back pain
- Difficulty sitting comfortably
- Constipation
- Feeling of incomplete evacuation, as if some stool remained after bowel movements
- Mucus-like stool consistency
- Bloating
Treatment:
- Immunotherapy through a clinical trial

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 Jessica’s Interview

Hey, I'm Jessica
I was diagnosed with Lynch syndrome
When my first symptoms started
Preparing for the colonoscopy
The moment everything changed
How I navigated how to tell people about my stage 3 rectal cancer diagnosis
When I finally got the results back
What my treatment plan looked like
What my reaction was to being on a clinical trial
What surveillance looks like for me
How my partner and I have navigated this
Cancer shifted my mindset
What I want others to know

Hey, I’m Jessica

I’m currently 30 years old, living in San Diego with my wife.

I’m really big on women’s sports. Women’s soccer, women’s basketball. My wife and I, those are our hobbies. We got women’s soccer. Got me through cancer last year, watching the games every weekend after treatment.

I think cancer helped me to find those things that I like to do again and find a new appreciation for them. So, painting on the beach and writing poetry and all of those things.

I was diagnosed with Lynch syndrome

I was diagnosed with Lynch syndrome in February of 2023, and I didn’t know what that meant. I was getting mixed reactions from doctors about it. So I said, “I’m not paying attention to this right now.” Very typically millennial of me.

So my wife and I started talking about family planning, and when I went to my gynecologist, she went, “Okay, you have a history of cancer in your family. Let’s just do genetic testing. Get that out of the way.” My mom had breast cancer at 36. My father had prostate cancer really early. I have grandparents who had cancer. So, I went into it thinking I was going to come back with the BRCA gene. So I was like, breast cancer. My mom was 36. How else do you explain that? Then I have this paper come back, and it’s telling me I have Lynch syndrome, and this counselor is telling me, “Oh, just get a colonoscopy at 30,” and I thought, “I don’t even know what any of this means.” There was so little information about Lynch syndrome. There are multiple genetic mutations associated with Lynch syndrome. So it’s kind of like this umbrella of information. So, if it wasn’t for talking about family planning and my gynecologist, then I wouldn’t have known to do genetic testing.

I was getting all of these mixed reactions. I don’t feel any kind of stability, and so having the Lynch syndrome diagnosis earlier, before my symptoms had really started ramping up, I always tell people that the genetic testing is what saved my life, because I knew I needed to advocate for more. I knew that Lynch syndrome put me at a higher risk for colorectal cancer. Those were the things I did read out of all of the information I was given. So, it was like, if I didn’t know I had that, all right, well, the doctor doesn’t think it’s that, and I remember hanging up the call with my primary and saying out loud like, “Oh, she doesn’t think it’s cancer,” but that was already on my mind because I knew I had Lynch syndrome. So, it was one of those things that if I didn’t have it, I don’t know that I would have advocated for myself the way that I did.

When my first symptoms started

I’ve always had tummy problems, you know? That was the cute, trendy thing that everybody has. Certain things just bother my stomach, and then in the summer of 23, I realized that this is more than just that. I had changes in needing the bathroom, like going more often or feeling like I needed to go more often. I always had a trace of blood in my stool, but that summer, it was bright red. So everyone was like, “Oh, that’s hemorrhoids,” and I was like, “Okay.” And then it kept happening more consistently, and I realized that it couldn’t be a hemorrhoid all the time. That doesn’t make sense, but abdominal pain, all of your stereotypical colorectal cancer symptoms, were worrisome.

So I went to a primary doctor. She was like, “Oh, it sounds like IBS, but you can go to a gastro if you want.” I was like, well, I don’t want to live with it even if this is IBS, this is terrible. I don’t want this.”

So the gastro didn’t have anything open until November in person, so I waited until November, and then by the time I got to that appointment, I thought, “Something is really wrong.” I no longer cared what anyone was going to tell me. I went into that gastro appointment and she said, “Yeah, it does sound like IBS,” and I responded, “Okay, I have Lynch syndrome. I have blood in my stool all the time. I’m constipated, and I can’t go to the bathroom.” I listed everything out. And then I went, “I need a colonoscopy.

I have a family history of cancer. I’m not comfortable leaving here knowing that I feel this way and not checking anything.” She went, “Okay, I think I should be able to get you an early colonoscopy. I think insurance will approve it.” I went, “I don’t really care. I need to know. I will figure out the insurance part of it somehow.” But the guidelines for Lynch syndrome are to have your first colonoscopy at 30, and I was 29 at the time. “This needs to happen. I need answers.” I have medical anxiety, so I knew that about myself going into it.

At that point, I wasn’t even passing stool anymore. It was like a mucus-like consistency. Nothing was moving. I’m not getting an answer, but at the same time, it was like, “If I had gone earlier and my symptoms hadn’t been that bad, if she had told me it was IBS, would I have been at that point in November, where I was feeling that something was horribly wrong. I can’t even if it isn’t cancer, I can’t live like this. I can’t even go to the bathroom. I couldn’t even sit down at that point in November. Well, I was on a pillow all the time. I had lower back problems. There was something very wrong, and so I was able to say to myself at that point, “I can’t just walk out of here and be like, sure, it’s nothing,” because I know it’s not nothing.

Preparing for the colonoscopy

I went through the whole holiday season, and I don’t know. I guess I thought, “I’ll do it when I’m back.” But at the same time, things still were progressing, and it was like, I have all of these like experiences where I’m like, “Oh my gosh, this is getting worse.” It was still time for symptoms to keep evolving.

And so I think that was a really odd experience. Moreso because I had to do the prep. I think my mindset most of the time was like, “The only way out is through. I have to do this.” I drink the terrible stuff, and that was, I mean, my first ever colonoscopy, but I remember saying to myself when I was doing the prep, “I can’t be naive enough to think that this is nothing like I’ve lived in this body long enough. There’s no way that I can go into this thing.” I think it’s going to be fine, because I think in my head I knew, but it was one of those things. If I said it out loud, it made it real, you know? I just kind of kept that to myself, but kept saying to myself, “Don’t go into this,” blissfully ignorant of anything.

The moment everything changed

So I had the colonoscopy on a Friday.

I got dressed, and they were like, “Okay, you need to sit here and wait,” and I was like, “That’s weird.” But then again, I’ve never had a colonoscopy before; maybe that’s just how it goes. So, I was sitting there waiting, and the gastro came over to me and she bent down at my level on the chair, and I was like, “Oh, this isn’t good.” I looked at her, and she showed me these pictures, and I’m like, “Oh my God, what am I looking at? Those are my intestines.” She said, “So I found a mass. I’m 99% sure it’s cancer, but I’m going to send it in for pathology.”

In that moment, I realized, “Oh, self-advocacy works.” Because had I not pushed for this, I would be living with this mess. There was a six-centimeter mass in my rectum. And I went home with the imaging, and she was like, “You can’t do anything until Monday.”

It’s one of those things where it’s like they say the C word and then everything else is like, womp, womp, womp, you know? I don’t know if she said anything else to me after. I don’t know if she explained. I vaguely remember getting a surgeon’s business card, but it was really just kind of like, what’s next? Where do I go from here? And being on a Friday, it forced me to think about it over the weekend. I think for me it was: How do I move forward? You gave me this information. What’s next? I didn’t not permit myself to feel things, but it was like, in this moment, right now, I need to figure something out. I’m a fixer. That’s me. I’m a get-this-figured-out kind of person. So that was very much myself, and I think a lot of that.

How I navigated how to tell people about my stage 3 rectal cancer diagnosis

Then, after that, it was, “How do I tell people this? How do I tell my parents and my in-laws and my family, my friends?” You don’t just drop this into a text message.

Some people knew I was getting the colonoscopy. So these people were like, “How’d it go?” I think that’s really hard when you’re now somewhat responsible for letting down the people in your life. It’s not that you’re letting them down, not that you did anything personally, but you’re dropping this huge thing on them, and then you’re dealing with their reaction to it.

I think a key reminder that I would tell myself is that I’m not responsible for their feelings. They can be upset and feel that for me, but I’m not responsible or obligated to sit in conversations where I have to listen to how they feel about the fact that I have cancer, and that’s something that I didn’t even realize in the beginning. I wish that somebody had said to me in the beginning, because I very much took that on myself. I was like, “Oh my God, all of these people feel this way about it, and I can’t do anything about it.” You blame yourself in a way, even though you logically can probably talk yourself out of it, but it’s still, if you’re hearing people continuously, even strangers, going, “I can’t believe it, how did this happen?” This reaction of trying to make themselves feel better, they’re not going to be me. I think being realistic about expectations of other people, I think finding out that somebody young in your life has cancer, will affect people differently, and so that might mean support looks different than you thought it would.

When I finally got the results back

I was just waiting, and as soon as it came back, I went, “What’s the stage?” That was my focus. It wasn’t so much, was it cancer or not? It was, what stage was it? Because that affected treatment, everything that I could look at for the next step. And I think that waiting for that was the hardest thing. I think my doctors were like, “Jessica, we will tell you.” I’m like, “Okay, but you don’t understand. How do I sit and live with this? How do I not know what’s happening? How do I just throw caution to the wind and wait? That’s quite a thing you’re asking me to do.” It was that, it was the staging, it was what I would have to prepare for.

So, I think that was probably my biggest thing I held my breath for, the stage, which I think I waited like two weeks for, probably because then we needed to do like an MRI and a CT.

What my treatment plan looked like

So, she said to me, but knowing that I would like to do it, we’re going to follow the clinical trial that they did at Memorial Sloan-Kettering here in San Diego. She said, immunotherapy — a word that was new to my vocabulary. “What does that mean? What is that?” And so she really explained immunotherapy for me, broke it down, told me about why that versus chemo and all of this, and she said to me, “You can do some more research on the clinical trial yourself, but they announced this back in 2022, I believe it was the first round, that 100% success rate.”

I was like, “Sign me up.” I grew up in New Jersey. Memorial Sloan-Kettering was the hospital that everybody went to. So I was like, “Cool, I’m in,” and she was like, “I just need to tell you, I’ve never had a patient on this kind of medication before. I’ve had patients on immunotherapy, but this exact drug I’ve never administered before, so we’ll be learning together.” I was like, “Cool.” She was straight up with me. She looked me dead in the face and said she didn’t have all the answers. To me, that was more comforting than her saying, “I have all the answers and I’m going to do it my way,” because that meant there was room for collaboration. There was room for me to come back and say to her, “This feels this way. I’m feeling this. I’m worried about that. Have you read about this?” There was an open dialogue there. Everybody is taking care of me, but self-advocacy taught me I need to be part of my care team. My wife needs to be part of my care team, and so I think while all of those things might be red flags to someone else, they were more of a reason for me to stay because she’s straight up. I don’t have all the answers.

So I was on immunotherapy for six months. My oncologist said to me that it would be seven infusions over those six months. So, we did the first three months, and then we would do a midpoint check to see how things were going. If my body didn’t respond, we would pivot to chemo, radiation, and surgery. So, when we started, we started with the first four single doses three weeks apart, and then after the midpoint check, we doubled the doses. Actually, right around the same time we started the double dose, we ended the midpoint check, and did it every six weeks. It was over the summer. So it kind of stretched that out for me, where I didn’t have to go to the infusion center so often, but it really wasn’t a big deal going to the infusion center because it was a 30-minute infusion. It took an hour total, but between waiting in the waiting room and getting to the chair and somebody getting me this, the infusion was shorter than any of the other stuff. So, we did the seven 30-minute infusions over the course of six months, and when we did the midpoint check, that was in May, we did a colonoscopy as well as an MRI, and when my gastro went in for the colonoscopy, she said to me that she had never seen anything like it, that the mass was entirely gone.

I was like, “Oh my God. What do you mean?” She’s like, “It’s just scar tissue.” So I talked to my oncologist afterwards, and I asked if we should stop. She was like, “No, we’re going to finish it out. It’s working like your body is working.”

I kept a symptom tracker in my journal. I would say by the fourth infusion, I was like, “Wow.” Going to the bathroom, I didn’t see any blood in my stool. That was the one that lasted the longest, but when they went in for the midpoint check, everybody was like, “I’ve never seen this before, ever.” We finished it out, and then in September, I was NED.

What my reaction was to being on a clinical trial

Any medication that anybody ever takes started as a clinical trial. I wasn’t scared of it because everything has to be trialed. After getting the background of Lynch syndrome, immunotherapy, chemo, and how that works, and the fact that people with Lynch syndrome typically don’t respond well to chemo. Everybody has that picture in their head of a cancer patient and what they look like and what. So, for me, it was like with immunotherapy, I was like, I’m willing to challenge that. I’m open to trying something that isn’t what everybody else is doing because of advancing science. It doesn’t scare me. I never thought about myself as a guinea pig or whatever. People do think that ends up happening with a clinical trial. It was more so for me, having Lynch syndrome, and being able to be part of something. Advancing treatment for people like me was really important.

What surveillance looks like for me

So, for colorectal cancer screenings, I do a yearly colonoscopy in January, and then I do a sigmoidoscopy every four months for the first two years. Since it was in my rectum, my surgeon just goes in, looks around, checks to see that the site of the cancer is fine, and I’m awake for that. After those two years, we’ll talk about keeping the yearly colonoscopy, but then stretching the sigmoidoscopy to every six months. Again, assuming there’s no recurrence or anything, and because of the Lynch syndrome, we do a yearly skin cancer check. We do MRIs every six months for endometrial cancer because Lynch syndrome increases the risk for endometrial cancer. We also do the CTS to check lymph nodes that were impacted, and then we also do breast screenings every six months. There’s no direct correlation of Lynch syndrome to breast cancer, but my mom had breast cancer at a young age, and my oncologist was like, “This is something we need to really keep an eye on.” So, I do a breast MRI and then six months later I do a mammogram, and we alternate that all year. I tell people that I have spring break in March. I have no scans or appointments. June and July are summer break because I don’t have any appointments or scans, and then I have the winter break, which is November and December, but otherwise, every other month of the year, I have a scan or an appointment of some sort.

How my partner and I have navigated this

You have a lot of hard conversations very early in your relationship. We had been together for ten years, so we knew each other. This wasn’t awkward in that sense. But it’s a lot of conversations about us and our anxieties going into it. Just like I have anxiety. She has anxiety too, going into scans and appointments, and she was at every treatment with me. I think the beginning of it was just blacked out for a while. It wasn’t until I was into survivorship and able to look at the beginning part of the year, but once the midpoint check happened, we could breathe like it’s working. We’re not worried about whether I’m going to have to pivot to chemo, radiation, and surgery. So, I think that was a point where the two of us could then talk about other things going on.

We’ve gotten a lot closer. We’ve gotten a lot more open and vulnerable, and it’s really a team effort.

Cancer shifted my mindset

I’ve always wanted to do that. Why haven’t I done it? Why don’t we go to more soccer games? Why don’t we go out to dinner when we want to go out to dinner? Yeah, I know money exists, but who’s going to spend my money when I’m not here? Like this idea of, you can’t do things that are enjoyable or leisure things because you have to be saving for this very specific thing, but at any point in time, life could just change drastically. We have zero control over any of it. Well then, fine, I can control doing what I want to do, and that whole making the decisions with myself and my wife in mind rather than like, “Oh, well, everybody else wants me to do all of these things,” or I’m maintaining this relationship, not because anybody gives it back to me, but because I feel like I have to have this relationship and then it’s like, well, it’s not working. So, just admit it’s not working. There’s no hard feelings, but it’s just not working right now. Intentionally keeping the people with whom your relationships are working, and I think every time I think about it, I’m like, intention. Why am I doing something? Who am I doing it for? Just kind of going from there. I think that’s a really big mind shift that comes with cancer.

What I want others to know

Be your biggest advocate. You know your body the best. You’re the only person to ever live in your body, and that goes beyond cancer. That goes outside of it. That’s how you’re feeling regularly. We don’t talk about the menstrual cycle enough. Things that are off there, or things that don’t feel right, or advocating for yourself for genetic testing. Knowing more about your family history. Asking those questions, and it’s not just advocating with a doctor either. That’s talking to family, that’s having hard conversations with family, and being able to say, I need to plan this. I need to know this information to build my life, and when I tell people about genetic testing, I always tell them, “Yes, it could come with a diagnosis, but it’s a roadmap.” Medical care is not one size fits all. What works for me isn’t necessarily going to work for you, and vice versa. So, the only way to know that is to get that information, and the only way to get that information is to advocate for yourself. I think that’s the bottom line, whether it’s within cancer or not, being your best advocate.

Thank you for sharing your story, Jessica!

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Laurent Gemenick’s Bladder Cancer: A Story of Second Opinions and Self Advocacy

Post author By Chris Sanchez
Post date September 25, 2025
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September 25, 2025

Laurent Gemenick’s Bladder Cancer: A Story of Second Opinions and Self Advocacy

Laurent’s story is a reminder that, as overwhelming as it is, living with bladder cancer can be filled with hope and learning to advocate for yourself can lead to opportunities to help others. This inspired the birth of a national organization to help bladder cancer patients across all of Spain.

Laurent was relatively young and didn’t fit the usual profile of a bladder cancer patient. So when he first noticed blood in his urine, urologists assumed an infection, but the blood in his urine continued. He then had an ultrasound which came back negative, but the blood in his urine continued. So he had a cystoscopy, which allowed them to look at the bladder from the inside and this procedure was what led to a bladder cancer diagnosis in October 2022.

Getting the right diagnosis had proven tricky, but his need to advocate for himself was just beginning as an even bigger turning point was just around the corner. After a difficult surgery to remove the bladder tumor, Laurent received a rushed recommendation for bladder removal. He and his partner, David, decided to seek second opinions. Five second opinions. Visiting five specialists gave them clarity and hope, as four of the five encouraged bladder preservation, proving how vital self-advocacy can be.

Throughout this experience, Laurent realised how isolating bladder cancer can feel. He struggled to find patient-friendly information and supportive communities. That’s why he joined a French support group and eventually co-founded CANVES, Spain’s first bladder cancer patient group, to help ensure that no one faces bladder cancer alone. By sharing experiences, hosting events like Spain’s first National Bladder Cancer Patients’ Day, and advocating for early detection, he empowers patients to ask questions, connect with others, and make informed decisions.

Laurent wants every patient to know that life doesn’t stop with a diagnosis, and that reaching out for support and timely access to reliable resources can make all the difference. Watch his video and read his interview below for more on:

How second opinions changed one bladder cancer patient’s life
Why Laurent believes no patient should ever feel alone
A candid look at life after a harrowing bladder cancer diagnosis
The inspiring birth of CANVES
Practical tips for self-advocacy and early detection

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
My First Symptom Was Blood in My Urine
Trying to Get My Diagnosis
It’s So Important to Get a Second Opinion
My Treatment and Follow-up
I Found it Hard to Find Information For Patients
Why I Decided to Start a Patient Organization
Fighting the Stigma in Bladder Cancer
My Message of Hope for You

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

There is no need to be afraid. When you get this news [that you have bladder cancer], you just have to keep going and keep living.
Laurent Gemenick – Bladder Cancer Patient Advocate

About Me

I’m Laurent. I’m from Belgium. I was diagnosed with bladder cancer.

I’m a happy-go-lucky person, always smiling. My friends and family describe me as talkative and positive. I love to garden.

When I was diagnosed with cancer, my world, my life, fell apart.

My First Symptom Was Blood in My Urine

The first symptom I had was blood in my urine. In my case, it was different, because it only became obvious at the end of urination. It wasn’t easy to see with my naked eye.

That’s what first made me go to the doctor.

Trying to Get My Diagnosis

At the appointment with the urologist, I discovered that I didn’t fit the age for having bladder cancer.

This kind of cancer usually affects older men or people with a family history of cancer. Neither was true in my case. So my doctor said that the blood in my urine could’ve been caused by a strain instead. He told me to come back another time.

But then I produced bloody urine again. I went back to the doctor and got an ultrasound. They suggested that I get an ultrasound because it can reveal if there is a tumor in the bladder.

Still, nothing came out, but I continued to have blood in my urine. This time, they did a cystoscopy. This procedure places a camera into the bladder and lets doctors confirm the patient’s diagnosis for sure.

That’s how they ended up diagnosing me with bladder cancer at the end of October 2022.

My relationship with the doctor wasn’t great. I was in the ICU for three days because of a procedure called transurethral resection of bladder tumor (TURBT). It didn’t go well, which is why it took three days.

Then the doctor took a sheet of paper out and said they would have to remove my bladder. He told me to “sign here” on the paper, and they’d do the surgery in 10 days.

I didn’t even know at the start that you could get bladder cancer, and I went from that to the point that this doctor was telling me, “I’m going to need to take out your bladder.”

Luckily, I had David by my side. He was always by my side.

We started looking for second opinions. We went to five specialists and got five opinions.

Four of those five specialists presented the same thing. They agreed that for treatment, they recommended preserving the bladder because of my young age, and that you don’t remove the bladder from a young patient.

They actually didn’t even use the word “cancer.” They kept saying “polyps.” The doctor I’m seeing now, who’s treating me, even took a long time to say the word “cancer.”

I didn’t even know at the start that you could get bladder cancer, and I went from that to the point that this doctor was telling me, “I’m going to need to take out your bladder.”
Laurent Gemenick – Bladder Cancer Patient Advocate

It’s So Important to Get a Second Opinion

The issue of second opinions is very important.

The patient may forget to get one because they go into shock after hearing the diagnosis or because of the mindset that the doctors are always right, and “what the doctors say is what we should do.”

But this is life-changing surgery. If they take out this organ, it’ll change your life because you’ll need to have a colostomy bag put in.

It requires seeing more than one doctor and getting more than one opinion so you can make an informed decision. If they are on the same path or not, if they have the same ideas.

My Treatment and Follow-up

I get follow-up appointments every six months. I get a urinalysis and cystoscopies.

The first resection surgery during the ICU stay in the beginning removed most of the bladder cancer. Since my biopsy results have been good, I have the check-ups every six months.

I Found it Hard to Find Information For Patients

We tried looking for information on the internet. You will find everything online — including the worst-case scenarios. David was my filter because he kept me from searching online.

On Facebook, I found a group of bladder cancer patients, but they were from France. Luckily, my first language is French. They welcomed me to the group and supported me. I joined at the same time as four other patients. Three had their bladders removed. One has passed away.

It’s a support group — they live what I live with bladder cancer. We discuss treatments. We experience anxiety at every appointment. We know the shared pain.

We were introduced to the World Bladder Cancer Association in Madrid, and that’s how we started CANVES.

Why I Decided to Start a Patient Organization

I don’t think what happened to me happens to all patients — being told that they would need to have their bladders removed, and “sign the paper here.” I think it has to be nuanced, and it depends on the experience and empathy of the doctor who’s taking care of you.

In Spain, there are two healthcare systems. You have the public healthcare system and the private healthcare system.

The private healthcare system works well. The public system does, too, but it takes more time to get things done there. You can’t get an appointment as quickly or often. Doctors usually don’t have more than five or ten minutes to talk to each patient. That’s actually a Europe-wide problem. In Belgium, the same thing happens.

That’s why we created CANVES. We understand that doctors don’t have a lot of time to dedicate to their patients, to give them the explanations or support they need. So we want to give the patients the information they need.

That’s our motivation. To make sure no one has to be alone with this.

That’s our motivation. To make sure no one has to be alone with this.
Laurent Gemenick – Bladder Cancer Patient Advocate

Fighting the Stigma in Bladder Cancer

There are 22,000 cases of bladder cancer each year in Spain, which makes it one of the most frequently diagnosed cancers here. There was no patient association here. Nothing. Resources? Nothing. Support? Nothing.

Most patients who have bladder cancer are indeed men, and those who are older. But we have to consider that more and more young people are getting diagnosed with bladder cancer. Patients used to be 70 or 80 years old, but they’re getting younger, 60 or maybe even younger.

And men don’t talk; they don’t go to the doctor.

It seems different for women. Starting when they are little, we tell them to go to a gynecologist as soon as puberty starts, to get tested. We don’t have similar conversations with boys to see a urologist for testing until they are typically 40 or 50 years old.

A milestone — this year, we organized the first National Bladder Cancer Patients’ Day. This was so important because we had the support of the Spanish scientific societies. This was huge because it happened in a short time, and united all these professionals to help people in one room.

That’s the most important thing for us: helping people. We get emails, and we talk and speak to people every day. This is the best thing we can do. This is why we exist.

We hope to have better information and build a faster line of detection, so if a patient goes to the emergency room with blood in the urine, we can help implement a protocol of tests to see whether it’s bladder cancer. Most of the time, if it’s caught early enough, bladder cancer is curable.

My Message of Hope for You

There is no need to be afraid. When you get this news, you just have to keep going and keep living. That’s the most important thing.

Many people think, “Why me?” Cancer diagnoses are becoming increasingly common.

You have to keep on living because life is short.

You have to keep on living because life is short.
Laurent Gemenick – Bladder Cancer Patient Advocate

Special thanks again to Johnson & Johnson for supporting our patient education program. The Patient Story retains full editorial control over all content.

Thank you for sharing your story, Laurent!

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Lung Cancer in Young Adults: What Loryn’s Stage 4 HER2+ Lung Cancer Story Can Tell Us

Post author By Chris Sanchez
Post date September 24, 2025
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Lung Cancer in Young Adults: What Loryn’s Stage 4 HER2+ Lung Cancer Story Can Tell Us

September 24, 2025

Loryn found herself in strange and unwelcome territory when she was diagnosed with stage 4 HER2+ lung cancer at 34 years old. Because she doesn’t have any known risk factors for lung cancer, her story is a powerful reminder that anyone with lungs can get lung cancer, even those who are young, healthy, and active.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Loryn’s experience started with symptoms that seemed easily explained: exhaustion, back pain, and later, chest discomfort. As a busy mom to a toddler, she chalked these initial symptoms up to lack of sleep and parenting fatigue. After multiple visits to the emergency room, she was diagnosed with pneumonia, which didn’t raise any red flags with her doctors. The small nodules discovered during her scans were dismissed as too minor to worry about, especially given her clean health history.

For four long months, Loryn went back and forth between specialists, was tested for autoimmune conditions, and endured intensifying pain. It wasn’t until a final ER trip that she learned that her cancer had spread to her bones and liver. This diagnosis was all the more unsettling because she was alone when she received it.

What followed was a crash course in self-advocacy. Biomarker testing, which wasn’t even mentioned at her original hospital, turned out to be crucial. A second opinion at Massachusetts General Hospital made all the difference. There, she finally felt seen and heard. Her new oncologist jumped into action, ordering a liquid biopsy to expedite treatment planning.

That’s when HER2 entered the conversation. While HER2 mutations are rare in lung cancer and don’t yet have as many targeted treatments as others, Loryn found hope in research, clinical trials, and the growing HER2 support community. She’s now receiving targeted therapy through infusions every three weeks and, despite the challenges, her quality of life has significantly improved.

Loryn is passionate about spreading awareness. Young, healthy people with no risk factors can get lung cancer. She encourages everyone to push for biomarker testing and get second opinions. She wants patients to feel empowered to say no to what drains them and yes to what preserves their health, dignity, and identity.

While her condition is incurable, Loryn views her cancer as something she can live with meaningfully. With support from her care team, loved ones, and online HER2 groups, she’s focused not on the what-ifs, but on each good day she gets to live fully.

Watch Loryn’s full interview and scroll down to read the transcript of her interview to find out more about her story:

Why having no risk factors didn’t protect her from a stage 4 HER2 lung cancer diagnosis
How repeated delays and overlooked symptoms kept her from answers, and what finally led to the truth
The moment one ER visit turned into life-changing news
What she wishes everyone knew about biomarker testing and second opinions
How she found strength in saying no to what drains her and yes to what matters

Name: Loryn F.
Age at Diagnosis:
- 34
Diagnosis:
- Non-Small Cell Lung Cancer (NSCLC)
Staging:
- Stage 4
Mutation:
- HER2
Symptoms:
- Extreme fatigue
- Persistent back pain
- Chest pain
- Joint pain in the feet, hips, legs, shoulders, and elbows
Treatments:
- Chemotherapy
- Radiation therapy: foot and elbow to help with mobility
- Antibody-drug conjugate

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 Loryn’s Interview

Hi, my name is Loryn
When something first felt off
The reason my symptoms were dismissed
The moment everything changed
How I learned about biomarker testing
How getting a second opinion helped my diagnosis
Learning more about my biomarker
What my treatment plan looked like
My advice around biomarker testing
I’m currently on a targeted therapy
How I’m navigating life with stage 4 cancer
Where I’ve found support
Why there's hope around clinical trials
What I want others to know

Hi, my name is Loryn

I live in Massachusetts. In November 2024, I was diagnosed with stage 4 non-small cell lung cancer with a HER2 mutation.

My friends would probably describe me as very loyal, consistent, and reliable. I’m pretty unchanging. I’ve been the same way my whole life, so I feel like I’m a go-to person, even by my parents, for thoughts and opinions.

When something first felt off

The first time I started experiencing symptoms that I can point to and say that it was definitely the cancer was in June 2024. I was experiencing extreme fatigue and back pain. I attributed it to working too hard and not sleeping well. I have a three-and-a-half year old, who was two at the time, so I thought that every parent was this tired and I probably pulled a muscle picking him up.

It wasn’t until the back pain started getting worse and I was having chest pain that I decided to go to the emergency room. At the time, all they saw were some small nodules, nothing big or concerning, so they diagnosed me with pneumonia, prescribed antibiotics, and sent me on my way.

Two weeks later, the pneumonia still hadn’t resolved, so I went back to the ER. They said it still looked like pneumonia, but the fact that it hasn’t resolved is concerning, so they referred me to a pulmonologist. The pulmonologist said that it wasn’t concerning as well and I didn’t have any risk factors to indicate that I needed further testing. They were on the path of wondering what could be causing the pneumonia. They thought it may be an autoimmune disease or something viral.

Then I was sent to a rheumatologist and while I was waiting for that appointment, I started experiencing joint pain pretty much all over my body. I felt it in my feet, my legs, my hips, my shoulders, and my elbows. After calling my doctor, I went back to the ER and that’s when they saw that my cancer had metastasized to my bones.

The reason my symptoms were dismissed

My doctors and I didn’t think the symptoms I had were serious enough to warrant doing more. I knew I didn’t feel good, but I was trying to toughen up and thought I was being dramatic. My husband said, “The doctors are saying you’re fine, but you can’t get out of bed and you’re struggling to keep up with our family.” We love to hike and go for walks, so it was odd that I changed so quickly.

I made a million excuses for why I was feeling the way that I was. I also tend to be an optimist, which definitely worked against me in that maybe I didn’t take myself seriously enough. I’m the type of person who’d say I’m fine, I’m okay, and I can work through it. Maybe I didn’t advocate for myself as strongly as I could have or should have.

My doctors only saw the small nodules. They were all smaller than 2 mm at the time. They described them as ground glass nodules (GGNs). They definitely had some bias as well because I was a nonsmoker and didn’t have any other risk factors.

During the first meeting with the pulmonologist, he ran through so many different questions about my work history, where I grew up, and if I had a wood stove at home. I think he was trying to find a reason to do a biopsy, but there was nothing that he could point to and say that could be something, which I think why the autoimmune route made the most sense.

Unfortunately, one of the tests came up positive. It didn’t necessarily mean that I had an autoimmune disease, but because I got a positive result, he said, “Let’s go this route and see what happens.” It definitely delayed things. It was four months in between my first ER visit and the last one when I was diagnosed.

The moment everything changed

On the day that I went to the ER and they gave me the news, I was by myself. Again, I downplayed it. At that point, my ribs were hurting a lot. I coughed and thought that I broke a rib. I texted my husband while I was at work and said, “Hey, I’m in a ton of pain. I’m going to the ER again and see if they can give me some pain medication.”

My husband even asked if I needed to go to the ER again because the bills were stacking up. I’ve had multiple CT scans and X-rays at that point, and they hadn’t found anything. I said, “Even if it’s just to get pain medication, I think I should go and get checked out.” I was even smiling and laughing through the whole visit. Even the ER doctor thought I probably bruised something and that I didn’t have a broken rib.

I did a chest X-ray and when he came back, he looked shocked. He said, “I hate to have to tell you this, but we’re seeing evidence of metastatic disease on your X-ray. We can see it in your ribs, shoulders, and liver. We’re going to do a CT scan, but we’re going to have to send you to another hospital because it looks like something more serious.”

I texted my husband immediately and said, “Whatever is happening looks like it’s getting worse. They mentioned metastatic disease.” My mind immediately went to cancer. My husband called my mother-in-law to watch our son then he came down to the hospital.

They transferred me to a larger hospital and kept me in for a week to do a biopsy of one of the lesions that they saw. They said they could have discharged me, but I would have had to wait a month for the biopsy. I wanted to know what this is and I didn’t want to lose my place in line, so I stayed inpatient for a week waiting for the biopsy.

The whole process took a while. They were afraid to call it anything. What they saw in my lungs still wasn’t huge. The nodules were still pretty small but because they were seeing it everywhere, they said whatever it is looks like it’s something that’s possibly stage 4, but they don’t know where it’s originating from.

We did the biopsy a week later and I was called with the news two days after. We knew the news was coming, but we weren’t sure how it was going to come, so I was home alone when I got the phone call. It was very quick and cold. The person said, “Hi, this is so-and-so from the cancer center. I’m calling to let you know that the results of your biopsy show that you have stage 4 lung cancer.”

It was pretty shocking. At that point, I had a full emotional reaction to what I was going through. I called my husband and told him to come home. Because in my mind, when I heard stage 4 lung cancer, I thought that I had weeks to live. I thought I was going to end up on oxygen.

The picture of lung cancer that I had was a very basic one. I had never known anyone with lung cancer, so I knew what I knew from TV and thought that I was going to deteriorate quickly. It was pretty devastating news to get because I didn’t know what lung cancer was.

There was no cancer center at the original hospital whose ER I went to. They were limited in what they could do and didn’t have any oncologists or any specialists on staff, so they transferred me to a sister hospital with a cancer center. But even then, the wing that I was at was pretty small. The week-long stay was a little scary. Everyone else who was being treated was much older and much sicker than I was. It felt like, “Why am I here? What’s happening that warrants me being in this position?”

How I learned about biomarker testing

They didn’t talk to me about it, at least not that I remember. While I was at the hospital, they talked about the biopsy and why they were doing it. They did the biopsy from my liver. They said that from that, they could tell where the cancer had originated from to be able to properly stage it and diagnose. But they never mentioned any gene testing.

It wasn’t until that phone call that I received then I called my husband to come home right away. I was in such an emotional state that I couldn’t do anything.

My husband called the surgeon that did my biopsy to get more information. When they originally called me, I tried to ask questions and they told me I would have to wait two weeks to see an oncologist to ask any additional questions. I shut down at that point, but my husband said, “No, we need some answers. We can’t sit here for two weeks with no information.”

I know now that they didn’t want to do anything for two weeks because they were waiting for the results of the gene testing, but I didn’t know that then because they didn’t mention it to me. When my husband called the surgeon, he brought up that they already sent the sample out for gene testing. He sent my husband a PDF file with information on lung cancer, which included what biomarker testing was, what the biomarkers could be, and what the next steps could be from there.

I read through that file before I heard anything further. It didn’t go into too much detail about HER2, which was what I ended up being diagnosed with. There was one quick mention of HER2 in the section that talks about what to do next and that there aren’t any targeted treatments for HER2. There’s traditional chemotherapy and that was it.

At that point, we felt that we weren’t getting the attention that we needed or the answers to our questions, so we decided to seek a second opinion at another hospital.

My husband’s brother is a doctor at Massachusetts General Hospital in Boston. After the experience that we had, my husband texted his brother, even though he’s not an oncologist, to ask him where we should go. His brother told us to come to Mass General and that they could get us in as soon as possible. He knew someone in their young adult cancer program and he reached out to that person for an introduction, and they were able to get me in in two days.

We lucked out that we had a connection there. Although from my experience, they are very quick at that hospital I had known about the Dana-Farber Cancer Institute, so I was in-between the two hospitals. I hadn’t connected with any support groups. I didn’t know anybody else yet.

In the first meeting at Mass General, we had a positive connection with the oncologist, so I was encouraged. We connected on a very personal level, so the decision to stay at Mass General was easy. I wanted to be somewhere where I trusted the doctors who I was working with, who I felt comfortable talking with, and where I felt that they had a personal connection with us as well.

How getting a second opinion helped my diagnosis

At the first meeting that I had with my oncologist, she talked in depth about biomarker testing, even though we didn’t know yet that I had HER2. She opted to do a liquid biopsy as we were waiting on the tissue biopsy because she wanted to get the ball rolling as quickly as possible after she looked at my scans and saw how advanced the disease was.

She did let me know that the liquid biopsy isn’t always as accurate as a tissue biopsy so if the liquid test came back with nothing, then we would wait for the tissue biopsy results. Luckily, the liquid test did come back with the HER2 mutation.

We had another meeting the day after the results came back where she went through HER2 and what that meant. She was very honest that there aren’t as many options for HER2 right now, but that there are many clinical trials available and that she was going to make sure that I had access to as much research and science as she could provide.

We moved very quickly into the treatment stage. I did a little bit of research about biomarkers and hoped that I had one that was a little more prominent, so I didn’t know as much about HER2. She answered all the questions that I had about HER2 and I felt comfortable with her answers.

She even let me know that she was part of a research project that was happening on HER2, which was encouraging. It made me feel a lot better about having a HER2 mutation, but it was shocking when I first heard that that was what I was going to be dealing with.

Learning more about my biomarker

I made the mistake of Googling HER2, which, looking back, I wish I hadn’t done. The information out there about HER2 is pretty dated. The first thing that Google told me was that it’s very rare, that the prognosis isn’t as great because there aren’t as many options, and that it tends to be a more aggressive mutation.

I was disappointed and scared. I still didn’t know as much about lung cancer. I was trying to learn as fast as I could, but I still had the mindset of not having much time left. With this rare and aggressive mutation, it felt like everything was stacking against me and that there was no good news coming in. Everything that we were hearing was negative.

But I trusted what my oncologist was telling me. She told me, “Don’t Google anything,” but it was already too late. Looking back to those first weeks from diagnosis until I started treatment, it was pretty depressing. I was holding off on some information from extended family because I didn’t want them to know how dire things felt. Everyone was feeling it, though, not knowing what was going to happen.

What my treatment plan looked like

The first treatment felt like it was the only option. My oncologist let me know that in order to be eligible for other options, I had to do this chemotherapy regimen first as it’s the only first-line treatment option. I’m sure if I pushed a little bit, maybe there could have been something else there, but it was presented in a way that made it seem like this was the only option. Then once this fails, we could talk about the next steps.

I was put on traditional chemotherapy. She was very honest that she wasn’t expecting it to last for very long. Optimistically, I would get six months on that treatment line. I was trying to mentally prepare for that.

Trying to explain that to family was a little tricky. Once you start cancer treatment, most people ask how long you’re going to be on treatment until you could stop. They look for the end goal. For me, it was just a necessary evil to get to something better.

We were able to start treatment pretty quickly. I started about a month after my initial ER visit. They moved quickly.

My advice around biomarker testing

I lucked out because I was in a place where they took biomarker testing seriously. At my first hospital, they weren’t as good about communicating that with patients, at least not in my case. It might be a lack of information or the doctors whom I was working with.

As I’ve been in this community, I’ve seen patients who are not offered any biomarker testing and put right on chemotherapy, so it’s still happening. I wish more people knew about how important biomarker testing is to knowing what your treatment options are and to have a full view of what the future might hold for the specific cancer that you have.

Even when you Google some of the cancer types, biomarker testing doesn’t come up most of the time. I try not to Google anymore, so maybe it’s getting better, but it certainly didn’t come up in my initial research.

Some of the larger hospitals are starting to push that information. People are getting better about getting second opinions, too, which is great. It’s part of your right as a patient. If you don’t feel that what you’re hearing is helpful, pushing for that second opinion is important.

My treatment was the standard of care for HER2 and the only option at that time. Since then, other options have started to become more standard of care. I was on that regimen for two and a half months before I had progression, so I didn’t get as far as the six months that my oncologist had hoped. The conversation then went to what the other options were and I was presented with more directions that I could go.

I’m currently on a targeted therapy

I started my targeted therapy in March 2025, which is an infusion every three weeks. A lot of oral targeted therapies are starting to come out, which is amazing. I’m excited for that to hopefully become a more standard option for HER2 in the future.

Right now, I’ve learned to manage having an infusion every three weeks. The first week after an infusion is a little rough with fatigue and nausea. I get some body aches as well, particularly where my lesions are.

I’ve gotten so much better from when I first started. My quality of life has improved so much between infusions. I feel more like my old self before any of my symptoms started. My bone pain has gone away. The liver pain is much better, as well as my blood work. For a long time, my liver enzymes were elevated. They were worried about my liver function, but that has since improved.

I live my life normally for two weeks and then I go back for my infusion. We plan our lives around the one week that I’m not feeling well. We get childcare and still have family and friends who reach out to help us as much as they can. It feels like I hibernate for a week and then I’m back to my old self, which is great.

I’m grateful for this treatment option that I’m on and, hopefully, I get to be on it for as long as I can. My oncologist is hoping that I get a year on this treatment and has prepared for what that next step after would be.

How I’m navigating life with stage 4 cancer

It’s tricky. For a while, I was dealing with other health issues. After I’d given birth to my son, I had to have an emergency gallbladder removal and dealt with digestive issues for about two years before my cancer symptoms started.

It felt like everything bled into one another, which I think contributed to why it took so long for me to be diagnosed. My primary care doctor probably had that in the back of her mind and felt that everything was an extension of my gallbladder removal from three years prior. The last time that I was truly healthy was in 2020 and I’ve been having health challenges since then. One day, I’d feel good; the next day, I’m not.

If I dwell on it too long, it gets to me. Typical 30-something-year-olds are planning their lives, building their families, and have these goals that they’re trying to attain, whereas my goal sometimes is to just get through the day. I try to look forward to vacations and hobbies, but it’s certainly not as it used to be five years before. Things have changed so drastically.

The perspective that cancer has given me has been to enjoy the day-to-day things that I have the privilege of having. For a time, I wasn’t sure that I was going to have those things anymore. I was barely walking when I was first diagnosed. I had so much pain in my hip and my leg. I thought I was going to be in a wheelchair, if I even made it that long.

I feel grateful for all of the mundane things that I get to have, but it can be challenging being in circles with parents of small children who are making these big plans for their kids’ future. I’m just hoping to make it to the point where I see my son get to do those things. I certainly don’t have some of the complaints that parents have. I might have them deep down, like the stressful days and temper tantrums, but I try to be grateful instead of being brought down.

It’s weird to say that, but I am grateful to the illness that I’ve been diagnosed with for giving me that perspective. Before I was diagnosed, things were just hard and I didn’t have a title to put on the pain that I was feeling. My husband and I struggled because I didn’t have energy and I was always going to the doctor. It was affecting our marriage, my relationship with my son, and my working relationships.

Finally getting to call it cancer and start treating it opened everything up for me and has changed my attitude. It’s changed me mentally. It’s weird to say that you’re grateful for cancer. I try not to dwell on the hard parts and the disappointing parts. I try to be grateful that I can move forward. Hopefully, research keeps up with me so that I can keep living the life that I have.

Where I’ve found support

We have a Facebook support group for HER2 patients. It’s not a huge group, but I have formed strong friendships with other HER2 patients. We check in with each other and have little group chats to talk about what we’re feeling. We’re watching the clinical trial field and being excited together for the things to come. I try to keep the cancer support within those support groups.

The friends that I have in my personal life came to me early on and said, “What do you need for support? How can I best support you?” I told them that I wanted to keep living my life normally as a 34-year-old. I want to hear about their lives and the things that they’re going through. It was important to me for them to ask me about the non-cancer parts of my life to maintain that normalcy.

Early on, I told my oncologist that I wanted to fight my cancer as hard as I could, but I didn’t want to lose myself in cancer treatment. I didn’t want to just become a cancer patient and the side effects to change who I am. She assured me and connected me with palliative care and other support resources to make sure that I could maintain the same quality of life that I have.

I’ve come to terms with my cancer pretty well. Having it described as a chronic illness and managing it like any other chronic illness, where you’re on treatment and you’re going to have good days and bad days, was helpful. Having to explain that to other people has been difficult, though.

People like to have goal posts, whether they’re someone who prays for you or someone who wants to support you in some way. People have asked, “How long are you going to be on treatment for?” When I have to tell them that it’s indefinite, you see the disappointment in their face, which affects me too.

In the beginning, we had so many people who came out to help us. We had people who were cooking for us, helping us financially, and helping watch our son for us. Everything was thrown at us to help us through this tough time. We had to tell everyone that these “tough times” are going to continue. It’s going to get easier in the sense that we manage it better. Hopefully, my health improves to a point where I can contribute to things again and I can walk again.

Cancer is always going to be a part of my life, so we’ll need consistent support from our network. Some of that support has died down quite a bit, but people have learned to support us in ways that are useful long-term. The struggle is trying to manage other people and their expectations of cancer. I don’t think people see it as like a long-term illness. They see it as short-term. Either the cancer is resolved and you’re healed or it doesn’t and you pass away. They don’t see the in-between of cancer.

Why there’s hope around clinical trials

I’m so encouraged by clinical trials. At night is when the cancer thoughts sink in. It’s usually hardest when I’m trying to fall asleep and those thoughts swirl around. I tell myself that there’s someone alive right now who’s working on medications that are going to keep me alive or working on a cure for lung cancer. Those keep me going, whether or not it’s happening and going to be here tomorrow. The fact that it could be here in my lifetime keeps me going.

Even if I don’t get to see the cure for lung cancer, it’s feeling more attainable. Research is making lives for cancer patients easier, longer, and improving their quality of life. It makes me so happy for the future of lung cancer. I’ve heard the same from people who have been dealing with lung cancer for five or 10 years. Things have changed so much just in the last five years. To see where things might be five years from now is where I’ve put my goal post.

We’ve only had access to the drug that I’m on now for the last two or three years. Things can change so rapidly. I try not to get stuck in all of the things that we don’t have and focus on the things that we do have. That’s where I find my hope in research.

What I want others to know

Advocate for yourself. If I’m feeling any pain or extreme nausea, I immediately bring it up to my doctors. A year ago, despite being in so much pain, so tired, and suffering, I was afraid to bring those up and be seen like a baby or a wimp. I can safely say that I’m not that way anymore. If anything is getting in my way of being happy and healthy, I bring it up with my care team. They’re always more than happy to help and to adjust my drugs or offer other treatment options.

Be honest about how you’re feeling, how it’s affecting you, and the things that you can and can’t do. Our medical system is not built in a way that people are going to check in with you, so you have to check in with them.

Thank you for sharing your story, Loryn!

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Building a Family While Facing Brain Cancer: Edward’s Grade 3 Astrocytoma

Post author By Chris Sanchez
Post date September 21, 2025
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September 21, 2025

Building a Family While Facing Brain Cancer: Edward’s Grade 3 Astrocytoma (IDH mutation)

Edward has always loved art, film, and storytelling, which led to a thriving career in television. But his life took an unexpected detour when he was diagnosed with brain cancer in 2024. In the fall of 2023, after a full day’s shoot, he had a seizure while alone in a hotel room and woke up disoriented and sore. He shrugged it off as an isolated incident, but later started to experience persistent headaches, light leaks in his vision, and brief episodes of confusion.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

The doctors Edward consulted suggested that he change his lifestyle and said he didn’t need thorough testing. It wasn’t until his honeymoon in Spain, after he had an episode during which he felt completely disconnected from reality, that he sought a second opinion. An MRI revealed a mass in his right frontal lobe, and it was diagnosed as a grade 3 astrocytoma with an IDH mutation, a form of brain cancer. (Editor’s Note: An IDH-mutant astrocytoma develops from astrocytes, a type of star-shaped supportive cell in the nervous system. Mutations in the IDH gene, which normally encode enzymes that help with cell nutrition, result in byproducts that promote tumor growth instead.)

The news that he had a rare cancer hit hard, especially as Edward was preparing to welcome his first child. Just days later, he underwent surgery that successfully removed 99.8% of the tumor. The rest of it was treated through chemotherapy and radiation to spare his motor and speech functions.

The emotional aftermath of these treatments was challenging, too. Edward was overwhelmed when he tried to process a prognosis of 10 to 12 years alongside becoming a new father. He also struggled with anxiety and mood swings due to his surgery. He leaned on therapy, which helped him develop coping mechanisms to support both himself and his family.

Edward now knows that managing brain cancer isn’t just about getting the right treatment. It’s also about mental resilience. He emphasizes the importance of mental health, acknowledging how therapy and the support of loved ones have helped him and his family. He’s also developed healthier habits, including clean eating, exercise, and mindfulness.

Despite the challenges he’s faced due to brain cancer, Edward is filled with gratitude. He’s learned to love simplicity, cherishing every moment with his daughter and family. He now works to help others by spreading hope and advocating for awareness about brain cancer.

Watch Edward’s video and scroll down to read the transcript of his interview. You’ll gain more insights into:

How an unsettling one-time seizure led him to his life-changing brain cancer diagnosis
Why early symptoms of brain cancer are often dismissed
The hidden challenges of balancing new fatherhood with brain cancer treatment
How mental health and therapy became Edward’s pillars of strength after surgery
The ways brain cancer reshaped his life’s purpose and perspective

Name: Edward H.
Age at Diagnosis:
- 30
Diagnosis:
- Brain Cancer (Astrocytoma with IDH Mutation)
Grade:
- Grade 3
Symptoms:
- Seizure
- Eye aura
- Persistent headache
- Numbness in hands and arms
Treatments:
- Surgery: craniotomy
- Radiation therapy
- 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 Edward’s Interview

My name is Edward
The first red flag that warned me that something was wrong
My symptoms got worse on our honeymoon
I finally went in for an MRI
What surgery was like
The moment everything changed
My treatment plan
The plan moving forward
Facing my prognosis
Where I’m finding support
What I want others to know

My name is Edward

I had a glioma. Astrocytoma, grade 3, with IDH mutation. I am now 32 years old.

My passion has always been art, movies, film, and anything in that realm. And I’ve turned that passion and hobby into a career. For the last five years, I’ve been filming for Educational Television for PBS and CNBC.

The first red flag that warned me that something was wrong

My first and only seizure was in the fall of 2023. I was in Houston, Texas, and I had just finished a full-day shoot. I get back to my hotel, and I’m dumping footage from my hard drives for the day. And all of a sudden, I wake up on the floor, throwing up in the hotel room trash can, and I don’t know where I am. My entire body feels super sore, like I’ve just been working out for days and days.

I call my wife, and I tell her I don’t know what happened, but I just woke up on the floor. And that I don’t really know where I am, I’m super disoriented. When I get home, I notice that the back right of my right arm has bruises all over it. I realized then that I had fallen onto my camera case in the hotel room. I don’t remember standing up. I don’t remember moving anywhere.

After the first seizure, there really weren’t a lot of symptoms. It was a slow burn into what I was feeling. I started to have a slight head pressure in my temples that would throb. If I leaned down to pick up something or got up too fast, simple movements that we do every day, my head would throb right afterwards. It would go away in about 30 seconds to a minute. I also started getting light leaks and light tears in my vision. I look them up on the internet, and everybody says it’s like a migraine with aura. And so I thought, “Maybe I’m just getting small migraines.”

My primary doctor at the time and I talked about some things, like getting an MRI, but since I didn’t have a history of anything, they just told me to eat healthier and go on walks. That seemed like a cop-out.

My symptoms got worse on our honeymoon

I got married and we went on our honeymoon. I had an episode in Spain where I could see, but I couldn’t really comprehend what I was seeing. It doesn’t seem like it makes any sense, but I wasn’t really there. I could still move and function, but I didn’t really know what I was doing. I was just disoriented.

I found out later that it could have been a conscious seizure, which is strange. After that, I switched primary doctors. I felt that something was off, and I just wanted to make sure that everything was good. So I found a new primary. They set me up with an MRI, but I almost didn’t go through with the MRI because I was feeling better. But my wife said, “No, you should still go and check, make sure everything’s good.” I went, “Maybe, we’ll see.”

One day, when I was working from my house, my hands and my arms went numb. It convinced me to have myself checked to see if I was okay. Which, at the end of the day, I wasn’t.

I finally went in for an MRI

I’ve never had an MRI. So they told me what to do, and it was super casual going in. But they helped me out of the MRI when I was done, which I thought was strange. And then I saw the radiologist standing in the doorway of the MRI. He asked me, “How’d you get here today?” And I told him that I drove. He hesitantly said, “Okay. We found a pretty significant mass in your brain, your right frontal lobe. You should go to the ER.

The denial phase set in really fast. And I started asking questions there. I get on the road and I’m driving my way to the hospital, and all I’m thinking about is the fact that my wife is pregnant and that my daughter is coming in the next few weeks.

I get to the emergency room. I’m there for around five hours. They admitted me. That entire time, my new primary was talking to the hospital. The radiologist was talking to my primary, which is wonderful communication. And they showed me the MRI scan of a tumor the size of an orange in my frontal lobe. And they tell me that we’re going to be doing surgery in the next four days.

What surgery was like

I got admitted to the hospital after the ER on a Wednesday. I stayed the night and went home Thursday. And then from Friday to Sunday, I had all my friends over at my house. We went out and hung out at a local spot. Everybody was in shock, but very supportive. And come Monday, I got to the hospital at around 9 a.m. and they pulled me back to pre-operation, and hooked me up with all the the bells and whistles.

My buddy, Joey, a firefighter, got off shift at 8 a.m. after working all night, and he came straight to the hospital to see me and my wife. After about 45 minutes in the pre-op, they wheeled me back to the operating room, shot liquid Xanax into my veins, and put whatever they put on my face to make me go to sleep. And I woke up on the 11th floor seamlessly.

The surgery was super successful. They got out 99.8% of the tumor, because if they had gone any further, they could have affected my motor movements and speech. So the surgeon made the executive decision to just kind of hold off the rest, and we’d zap it with chemo and radiation.

I had a gnarly scar and a ton of hair, too. It was pretty impressive. They shaved just where they were doing the incision. Not my whole head or anything. From there, recovery took about two months. I had to lie in bed upright to sleep. I couldn’t bend over and pick anything up. I also couldn’t pick up more than five pounds. I had a little grabber claw walking around my house.

After those two months, I started six weeks of chemo and radiation.

The moment everything changed

Once the surgery was completed, I stayed five days in the hospital recovering. My oncologist at the time came in to speak about what this thing was, and my entire family was there too. My mom was probably the one asking the most questions. The oncologist told us that it’s a glioma astrocytoma, grade three. But I also have an IDH mutation, which almost makes it like a 2.5. So having an IDH mutant tumor is actually a good thing, because it kind of dumbs down its strength.

I’m still in a daze because nothing like this has ever happened to my family. And, of course, I’m the guinea pig of getting something new in the family.

The prognosis came either on the first or the second visit after the hospital. That time, it was just me and my wife in there. I didn’t really know what a prognosis was. My oncologist said, “Do you want to know the prognosis?” I said, “Sure.” He told me in front of my pregnant wife that I might have a 10- to 12-year lifespan based on the research that they have and after the treatment that they do on people who have what I have.

I could tell that my wife was not in the right state of mind to receive this prognosis. But I’ve always been the one to go, “Okay, what do we do now?”

I don’t dwell on a lot of stuff. But that prognosis was eye-opening, especially because in three weeks, our daughter was going to be born. And I was thinking, “Right now, I’m battling this thing.” It was very hard to handle those emotions, because I just wanted to focus on my daughter.

My treatment plan

Unfortunately, for what I have, the options are very limited: radiation and chemo together. They need to cooperate to get the rest of that cancer out. So that was a no-brainer.

But then, after the six weeks of chemo and radiation together from November to April, I did six months of just chemo. Five days a month for six months. And my new oncologist told me, “There’s really no research or science behind whether you should do chemo for a year or six months.” With how it was messing with my body and what little research they had, I decided to do the six months because my quality of life was just not great.

And when it comes to radiation, now it’s September. It should be weaning out of my body now, but it stayed in my body for a year. And the chemo was kind of fighting with it, because they’re like a team.

I knew a little bit about chemotherapy, but not much. The good thing about what I did is that I took pills orally at home, and so I had to eat a healthy dinner by 6:30 p.m. every night. I couldn’t snack or eat after 6:30 because my body needed to digest all my food, and my stomach would need to be as empty as possible when I would take the chemo at 8:30 every night. And so that was every day.

When the radiation started, I had to get fitted for a mask. And every day, five days a week, for six weeks, I would go in, I would lie down, they would put the mask over my face and lock it to the table. They would then send a laser back and forth over my head. It would probably take around seven minutes. And after about three weeks of radiation, I started losing my hair right where the radiation was going. Not from the chemo.

Each month, I would have about a day or two where I’m just down and out. I have to sleep. I have to rest, I can’t work. It would just kind of smack me in the face with being so tired. And due to the chemo, I couldn’t drink any alcohol — my diet had to be super, super clean. The chemo would work best around midnight or 1 a.m. when I was in REM sleep, and on an empty stomach. But I would wake up with stomach aches or a sensation I could just feel in my chest or whatever, due to the poison that’s in those pills working. But towards the end of my six-month chemo cycle, I did start getting actually sick on the midday of the following day. It started accumulating in my body.

The plan moving forward

After my six weeks of chemo and radiation, I got to ring the bell.

So that was fun. But after the six months, it was — oh my God, it was a breath of fresh air. It was the realization that I don’t have to do this every single night anymore. I don’t have to have that one week out of my month where I feel terrible.

But it’s also been sort of good to me, because it taught me better and healthier eating and diet. And I also got to learn that exercise is so important. Vitamins, too.

I lost a decent amount of weight, but it was weight that I wanted to lose. And now it’s just about maintaining that healthy lifestyle and exercising. And obviously, I had to seek therapy. No person can do this alone. But it’s been good.

Now, my daughter is everything, and I want to be everything for her.

It’s given me a new perspective on life.

If anything does come back or whatever, it’s chemo or surgery.

Facing my prognosis

The biggest challenge, honestly, was coming to terms with my prognosis. I think it’s really weird as a human being to practically have a ticking clock on your shoulders, so to speak. Nobody I know has anything like that.

I feel like what I’m going through is different. But I’m also challenged to not get people to pity me. I’m still trying to be the same.

Another challenge is dealing with my heightened emotions ever since surgery. All of our emotions are plugged into our frontal lobe, and now I have half of my frontal lobe left.

Before my surgery, I was really just kind of carefree. Whatever happens, happens. I’d just laugh it off. But now, it’s like the littlest things can set me off. I can now be anxious and anticipate bad stuff. That’s a big challenge — trying to battle all that stuff while learning to navigate the new me. My therapist helped me a lot. She’s given me methods and tips for when I do feel a certain way.

I’m learning to be strong for my daughter and for my wife, so that my wife isn’t stressed out being around me because of my new mood. I’m well aware of what I need to do to be a good dad and husband, and I’m focusing on that.

And if I do get super angry, I’ll just go outside for a little bit, do some yard work. I recently got a bike, and I do early morning bike rides. Anything I can do to distract my mind from what triggered me. That’s a new tricky task.

Where I’m finding support

I’ve actually been thinking about joining some sort of support group. I’ve been in talks with one of the pastors at my church who does small groups for men.

But I’m really privileged to have a village behind me when it comes to my family, my friends, including the ones I grew up with, and my parents. They did a meal train for months. They donated to help us financially. I’ve been lucky that everyone around me has been incredibly supportive. What do I need? What does my family need? What does my daughter need? And I am forever grateful for that.

My perception of life has definitely changed. It feels weird to say it, but I feel grateful to have had this happen to me. Now, what will fulfill my life is a lot simpler than I thought it was going to be, if that makes sense. The things that I want now have changed. The person I want to be has changed. And I’ve found that one of my biggest goals now is just to help other people.

What I want others to know

You need hope. But hope can come in different forms. And I think keeping that idea of hope and positivity goes a really long way.

Being positive and hopeful can heal you. That’s my opinion. And having that positive outlook can heal you and can heal people around you.

You don’t really know what people are going through. We all put up fronts. Just be courteous. Be generous.

It’s weird to say, but life is short. Do things more for others than for yourself.

Thank you for sharing your story, Edward!

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My First Symptom Was Blood in My Urine

Trying to Get My Diagnosis

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My Treatment and Follow-up

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