Author: Chris Sanchez

Bladder Cancer Awareness: A Firefighter’s Story

Post author By Chris Sanchez
Post date February 18, 2025
No Comments on Bladder Cancer Awareness: A Firefighter’s Story

Bladder Cancer Awareness: A Firefighter’s Story

The Many Faces of Bladder Cancer: Voices of Strength and Resilience

Our new series, The Many Faces of Bladder Cancer: Voices of Strength and Resilience, shares genuine stories from people battling bladder cancer. These powerful stories highlight the experiences and the challenges they encounter — and intend to foster hope, understanding, and a fresh outlook on dealing with this condition while raising bladder cancer awareness.

Bladder cancer is the 4th most common cancer diagnosed in men in the United States, impacting more men than women. In the U.S., the American Cancer Society estimates that in 2025, there will be:

About 84,870 new cases of bladder cancer (about 65,080 in men and 19,790 in women)
About 17,420 deaths from bladder cancer (about 12,640 in men and 4,780 in women)

Globally in 2022, more than 600,000 people got diagnosed with bladder cancer and more than 220,000 people died from it. The World Health Organization says most bladder cancers are diagnosed at an early stage, when they are very treatable, while 25% of bladder cancer cases are diagnosed “at later stages.”

Whether you’re a patient, care partner/giver, or someone interested in learning about bladder cancer, our goal is that these stories of bravery and resolve of those facing bladder cancer will increase awareness and break down myths. Most importantly, we hope you learn the importance of self-advocacy in your own healthcare.

Thank you to Pfizer and Astellas 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.

Thank you to Imerman Angels for their partnership. Imerman Angels is here to provide comfort and understanding for all cancer fights, survivors, previvors, and care partners through a personalized, one-on-one connection with someone who has been there.

The Power of Perseverance and Self-Advocacy in Growing Bladder Cancer Awareness: Lonnie’s Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez & Stephanie Chuang

Table of Contents

Introduction
Lonnie's Background
- Life as a Firefighter and EMT
My First Symptoms
- Advocating for myself
Diagnosis and Treatment
Frustrations and Self-Advocacy
Cancer Advocacy to Build Bladder Cancer Awareness
Why Lonnie Keeps Going
Advice Lonnie Offers

Introduction

One of Lonnie’s passions in life was to be a firefighter. He had no idea that this would actually increase his risk for getting a cancer diagnosis. This is his story.

While Lonnie was still working as a firefighter, he got hit with the news: He had stage 3 bladder cancer, news that hit him and his wife of 42 years, Deb, in January 2019.

That’s why he’s sharing his story – to connect with others dealing with bladder cancer, and also to highlight that firefighters are at a higher risk of a bladder cancer diagnosis.

The World Health Organization’s cancer arm, the International Agency for Research on Cancer (IARC), has defined firefighting and exposure on the job as a Group 1 carcinogen, stating there’s sufficient evidence for cancer in humans.

Exposure to carcinogens in fires and in other situations puts firefighters and other first responders at an elevated risk of bladder cancer.
Bladder Cancer Advocacy Network

Watch Lonnie’s story and ready below to learn more about what Lonnie calls the most important message he has for others out there, and how he got through his toughest times during and after treatment.

“You saved your own life,” is what they said, because I refused to take no for an answer. I was one of those people who knew my body, knew something was wrong, and was willing to fight for myself.

Lonnie’s Background

I live in Nebraska. I was diagnosed with stage 3 bladder cancer in January 2019.

I’ve been married for 42 years to my wife, Deb. I’m a motorcyclist and love long-distance rides. I also love hunting, fishing, and camping.

I’m part of an outreach program for cancer survivors, which aims to build bladder cancer awareness among other things. If anyone wants to contact me and talk about bladder cancer, what I went through, and what they need to do — I’m here. I’ll answer your questions. I’ll give you the truth the way it is.

Life as a Firefighter and EMT

I’ve been a firefighter for as long as I’ve been married. We moved to my wife’s small town after we got married, and I joined the fire department there right away when I heard they needed volunteer firefighters. They also asked me to be an EMT, but that took a bit longer. I wasn’t into it initially, but I had an amazing experience saving the life of a friend who had a terrible accident. I got to do something good for somebody who I cared for. From then on, I was hooked.

I was just 22 when I handled my first house fire. We didn’t have enough guys to do everything. Four people showed up that day and everyone else was at work.

I did what they call an interior attack: I ran into the house by myself, which was not exactly a smart thing to do, but it turned out okay and we put the fire out.

I’ve always liked helping people, especially through what might be the worst day that they may ever have and I get to be part of that as a firefighter and an EMT.

I was sitting on the toilet and wasn’t even actively urinating. My urine was running out of me.

My First Symptoms

I started to experience symptoms in October 2017. I was in Louisville, Kentucky, with some friends at a firefighter competition. These competitions allow firefighters to showcase their skills in full gear.

At about 10 p.m., I was getting ready for bed and had to go to the bathroom. By the time I got back to bed, I had to urinate again. At 3 a.m., I was sitting on the toilet and wasn’t even actively urinating. My urine was running out of me. I had to wake people up and tell them to bring me to the emergency room.

When I got home, I went to my primary care physician and told them what happened. Since I was over 50 at the time, as expected, he said it was probably my prostate, but I knew it couldn’t be since I get my prostate checked every year at work and my PSA is great. As a matter of fact, I had my prostate checked before I went to my PCP.

Then the doctor thought it could be a bladder spasm. He put me on medication and told me that it would take a month to get into my system and it worked. After a month, I wasn’t getting up in the dead of night to urinate. Those effects lasted from December 2017 to about April or May 2018.

At that time, I began to notice that I was slowly beginning to urinate in the wee hours again. I would go once a night and then it crept up to twice a night.

We were starting to travel to more firefighter competitions and I noticed that I needed to stop every two hours. Those two hours were shortened to an hour and if I tried to hold it in, it would hurt.

As soon as the scope entered my bladder, it revealed a mass the size of a woman’s fist.

Advocating for myself

I made an appointment with a urologist. She took a urine sample and found no blood in my urine, nothing to indicate anything was wrong.

She said it could be my prostate, but I already knew that it wasn’t. I had my paperwork with me from work, which I showed her. To verify, they took a blood test, which didn’t turn up anything. She tried checking my prostate and thought it was slightly enlarged and said to come back in 6 months. I shook my head and said, “I know this is something else. It hurts.”

She threw up her hands and said they would scope my bladder, for which I had to wait about 30 days.

They did the bladder scope and there was a TV in the room so we could check out what they found. As soon as the scope entered my bladder, it revealed a mass the size of a woman’s fist. The doctor said, “There’s an 80% chance this is cancer. We’ll need to wait another month to get a biopsy.” That took place on January 1, 2019, and the doctor removed as much of the tumor as he could.

After my friends left and my wife came back, I asked her to get a paper and pencil because I felt so bad that I thought I was going to die. I have never been that sick in my life.

Diagnosis and Treatment

Chemotherapy

The biopsy found that I had stage 3 bladder cancer, so I started treatment.

I underwent chemotherapy from January to March 2019. I was supposed to do four rounds, but they had to stop because it wasn’t working and they even said that it might kill me.

My wife had to head back to work, so some friends came down to sit with me while having my eight-hour chemo procedure.

I reached up by reflex to find out what it could be and pulled out a handful of hair.

Treatment experience

After my friends left and my wife came back, I asked her to get a paper and pencil because I felt so bad that I thought I was going to die. I have never been that sick in my life.

It was horrible. I never threw up, but I felt awful. I couldn’t even get out of a chair by myself.

Two days after I began chemotherapy, my hair started to fall out. I was trying to relax and watch TV when I felt something fall on my face.

I reached up by reflex to find out what it could be and pulled out a handful of hair.

Surgery

We decided to explore surgery. I had been going to [one place] for my treatment, but my doctor suggested a surgeon in Omaha, who happened to be the same surgeon who treated my dad years before.

He ended up performing my surgery on May 9, 2019. He removed my bladder, prostate, 15 lymph nodes, and around 60 cm of my small intestines, and reconnected it. They created a new bladder, a neobladder as it’s called, and attached my urethra to it so I could urinate like I normally do. That took 10 weeks to heal.

If I hadn’t advocated for myself and if I had been sent home for six months like one of the doctors told me, it would have been too late for me by the time I had gotten back to them.

The impacts of surgery

I needed to learn to urinate again and part of that was to deal with the fact that I leaked constantly because I had no control over my urination. Thanks to a young lady who helps women deal with pelvic floor issues, I was able to regain control over my urination and went from wearing around eight pull-ups a day to zero. By September 9, I was able to return to work full-time.

After having undergone surgery, I was found to be in remission.

Frustrations and Self-Advocacy

I want to underscore how important it had been that I insisted that what I was experiencing was not related to my prostate and that it was something else.

My urologist told me after my surgery that if I hadn’t advocated for myself and if I had been sent home for six months like one of the doctors told me, it would have been too late for me by the time I had gotten back to them.

“You saved your own life,” is what they said, because I refused to take no for an answer. I was one of those people who knew my body, knew something was wrong, and was willing to fight for myself.

You need to fight for yourself because you’re the only person who can do that.

It doesn’t help that I’m something of a unique case. When I went to urology, I was told that I was the first person the doctor there had seen with this kind of cancer who didn’t have blood in their urine.

I should add that after my bladder and prostate were removed, I asked the surgeon how my prostate was and it was fine.

What I’ve been through has led me to become a cancer advocate for bladder cancer and other types of cancer, too.

Cancer Advocacy to Build Bladder Cancer Awareness

What I’ve been through has led me to become a cancer advocate for bladder cancer and other types of cancer too.

[When] the government was starting to realize that firefighters are at high risk for cancer, and consequently, they were starting to advocate that we keep our gear clean.

Having dirty gear was a point of pride because it showed that you were doing your duty as a firefighter, but we learned that that was wrong and had to change other people’s minds as well.

We bought a washing machine and advocated that gear had to be cleaned every time it had been used, even if we’d gone out to put out a little grass fire or a single house fire.

It became important for firefighters to make sure to not only keep their gear clean but also clean themselves. They had an hour after potential exposure to clean their gear and shower off anything that they might have come in contact with.

Getting firefighters and their gear cleaned up as quickly as possible has to be the goal for every fire department in the country.

Bladder cancer awareness is about wellness. Early prevention is about making sure you get screenings and checkups. It should be a requirement for firefighters, even in small towns, but it’s not happening yet. Not unless they go out on their own and do that. For instance, we do screenings for prostate cancer but not for bladder cancer. Screening for bladder cancer markers, while available, isn’t a standard procedure.

It’s good that bladder cancer awareness as well as that of other cancers is growing fast, but it’s not growing fast enough. We’re not doing a good enough job because guys are still getting sick. Things are slowly getting better, but unfortunately, they do take a lot of time to do so.

I’ve mentioned why I keep going. I need to pay back all the people who have helped me out.

Why Lonnie Keeps Going

I keep going to prove that I can do it to help build bladder cancer awareness. But as you know, I’ve had to make adjustments.

After my chemo and surgery, my goal was to prove that I was tough enough to go back to work and I achieved that. It was a challenge, but I went back to work and did my job.

When I wanted to compete again, I went back to the gym for 5 or 6 days a week, training as hard as I could. I competed and finished as world champion. My team and I ran in Salt Lake City in 2022, in the finals in the over-40 division; we finished second in the world and the winners had to break the world record to do so.

Being in combat challenge… it’s one big family. You have friends all over the world because of it. Some of them still check up on me and that’s the best thing ever. I need to pay all these people back somehow. And that’s another reason I keep going.

It’s so important to find a lot of support like I did.

Advice Lonnie Offers

Find Support

It’s so important to find a lot of support like I did.

Deb has been incredible. She cried when she needed to cry and told me to buck up when it was time to man up. “You’re tougher than this,” she would say.

My combat challenge team has been equally awesome. When my hair started falling out so early because of chemo, my entire crew shaved their heads in solidarity.

It means the world to me to have had such great support the whole way through.

Be There for Others

I’ve mentioned why I keep going. I need to pay back all the people who have helped me out.

Being in that combat challenge — it’s like joining one big family worldwide. I’ve competed overseas, and because of it, I now have friends from all over the world.

Up to now, they still do check up on me. “How are you doing?” Hearing that from them is the best thing ever.

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

Bladder Cancer Resources

Bladder Cancer Causes & Symptoms

Understand common bladder cancer causes, urine color, symptoms, and treatments as described by real patients.
...

Bladder Cancer Series

Bladder cancer patients Ebony & LaSonya talk about their cancer journey, including their first symptoms, how they processed their diagnosis, treatment options, and how they found support. Dr. Samuel Washington, a urologic surgeon, also gives an overview of bladder cancer and its treatments.
...

Diagnosis and Treatment for Bladder Cancer

Learn about the diagnosis and treatment process from bladder cancer survivors and medical experts. Discover diagnosis and treatment options./p>

...

Chemotherapy Desmoplastic Small Round Cell Tumor (DSRCT) Patient Stories Rare Surgery Treatments

Gianna’s Rare Desmoplastic Small Round Cell Tumors (DSRCT) Story

Post author By Chris Sanchez
Post date February 12, 2025
No Comments on Gianna’s Rare Desmoplastic Small Round Cell Tumors (DSRCT) Story

February 12, 2025

Gianna’s Rare Desmoplastic Small Round Cell Tumors (DSRCT) Story

Gianna, a graphic designer from Philadelphia, PA, shares her journey after being diagnosed with desmoplastic small round cell tumor (DSRCT), a rare sarcoma, in 2024. Her symptoms began as UTI-like discomfort and stomach pain, leading to visits to the ER. Initially, doctors could not identify anything alarming. However, 6 months later, Gianna also began experiencing fainting spells, due to internal bleeding from an 8-centimeter mass identified in her abdominal cavity. Initially misdiagnosed as a benign cyst, the mass was surgically removed, leaving Gianna frightened as she awaited diagnosis.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

In October, Gianna finally received a definitive diagnosis of DSRCT. Her treatment plan at Fox Chase Cancer Center involved chemotherapy over 7 rounds, translating to 14 cycles. Gianna’s routine includes hospital stays for chemotherapy, interspersed with rest periods at home. Due to her chemotherapy, she consequently experiences side effects like a runny nose, bone pain, and hair loss. However, she remains upbeat, having prepared for these challenges by purchasing wigs and finding empowerment in shaving her head with her father’s, boyfriend’s, and brother’s support.

Beyond dealing with the physical challenges brought about by desmoplastic small round cell tumor (DSRCT), Gianna also emphasizes the importance of mental health. Walking outdoors and speaking with a therapist contribute significantly to her well-being. Social media connections with other cancer survivors offer further support, strengthening her resolve. Her family and friends also provide vital encouragement, reinforcing her positive outlook.

Gianna advocates maintaining hope and staying positive. She likewise stresses the value of focusing on activities that bring joy and taking life one day at a time. Moreover, by sharing her story, Gianna aims to inspire others facing similar battles to remain hopeful and resilient. She additionally emphasizes that despite her DSRCT diagnosis, it is nevertheless possible to continue living a fulfilling life.

In her message, Gianna urges those listening to cherish every moment and engage in activities they love. She further underscores the significance of maintaining hope and living in the present, asserting that cancer does not dictate one’s ability to enjoy life. Lastly, Gianna’s story serves as a beacon of positivity, offering encouragement and solidarity to others battling DSRCT and other forms of cancer.

Name:
- Gianna C.
Diagnosis:
- Desmoplastic Small Round Cell Tumors (DSRCT)
Age at Diagnosis:
- 27
Initial Symptoms:
- Urinary tract infection (UTI)
- Consistent pressure in stomach
- Stomach pains
- Passing out
Treatment:
- Chemotherapy
- Surgery

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

Thank you for sharing your story, Gianna!

Inspired by Gianna's story?

Share your story, too!

Tom’s Stage 2 Prostate Cancer Story

Post author By Chris Sanchez
Post date February 10, 2025
No Comments on Tom’s Stage 2 Prostate Cancer Story

February 10, 2025

Tom’s Stage 2 Prostate Cancer Story

Tom, a prostate cancer survivor from Dallas, TX, shared his journey since being diagnosed on his birthday in 2015. Initially, the diagnosis devastated him, especially since he prided himself on being fit and healthy and had always taken proactive measures to monitor his health. Despite the absence of symptoms, he maintained regular PSA tests, which eventually showed increasing levels. This led to a biopsy confirming his cancer.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Consequently, Tom experienced a whirlwind of emotions, magnified by having witnessed his best friend succumb to prostate cancer a year prior. But he was determined to face his own battle differently. Faced with treatment options for his prostate cancer, Tom chose a prostatectomy to eliminate the cancer, fearing its potential spread. His surgery was successful because his doctors found that the cancer had remained contained in the prostate.

However, his recovery was not without challenges. Tom had undergone rigorous physical training prior to surgery, believing it would help him recover faster, but despite this preparation, recovery still proved difficult. He discusses the changes and challenges post-recovery, including diminished sexual function and initial incontinence. However, these side effects, part of his new normal, have not deterred him from living an active life. He relied on perseverance, maintaining mobility, and activity.

Tom’s mindset transformation, inspired by his friend’s advice and his own experiences as an Ironman triathlete, played a pivotal role in his recovery. The Ironman motto, “anything is possible,” encouraged him to set goals, like walking his daughter down the aisle and participating in another Ironman event, both of which he achieved.

Tom continued to exercise vigilance and undertake his proactive health practices after his successful treatment. For the first 5 years post-surgery, he had bi-annual PSA tests, transitioning to annual check-ups in the subsequent years. He emphasizes the significance of these tests in reducing cancer recurrence risks.

Tom has also turned to advocacy to help others avoid the isolation he felt during his journey. He joined and contributed to organizations like Zero Prostate Cancer and Mary Crowley Cancer Research, advocating for patient perspectives in treatment options.

Tom reflects on the importance of having a support system, acknowledging the mistake of isolating himself initially. He emphasizes the necessity of open conversations about cancer, advocating for a community and shared experiences. Furthermore, he shares that conquering fears can reveal hidden strength. His journey has enabled him to help others through advocacy and support, fulfilling his life’s purpose.

Name:
- Tom H.
Diagnosis:
- Prostate cancer
Age at Diagnosis:
- 61
Staging:
- Stage 2
Initial Symptoms:
- None
Treatment:
- Surgery (prostatectomy)

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

Thank you for sharing your story, Tom!

Inspired by Tom's story?

Share your story, too!

February 7, 2025

Erin’s Stage 3C High Grade Serous Ovarian Cancer Story

Erin shares her personal battle with high grade serous ovarian cancer. Living with her husband and two adult children in New York, she enjoys biking and creating miniatures. Her health journey began with irregular periods and persistent cramping, which she initially attributed to perimenopause. Despite experiencing chronic fatigue and gastrointestinal issues, she did not suspect anything serious until she began bleeding continuously in November 2020.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

After consulting various doctors and undergoing numerous tests, Erin opted for a hysterectomy in August 2021. About a week after the procedure, she began experiencing serious symptoms including constipation and severe pain on the lower sides of her back, and had to go to the hospital. She was struggling with these complications when it was revealed that she had extensive stage 3C high grade serous ovarian cancer. Following the diagnosis, Erin advocated for surgery before chemotherapy to assess the cancer stage. She underwent debulking surgery later in November to reduce the size of the tumor when it couldn’t be fully removed, which confirmed the widespread nature of her cancer.

Despite facing severe physical challenges, including a fistula and subsequent hospitalization, Erin remained proactive about her treatment. She researched extensively, consulting peer-reviewed journals and medical experts to make informed decisions. Her insistence on surgery first played a crucial role in her treatment plan.

Erin endured 6 rounds of chemotherapy, facing only one significant adverse reaction. The treatment exacerbated menopausal symptoms, such as hot flashes, but she persevered. By March 2022, Erin completed her chemotherapy, marking her remission with a triumphant bell ring.

Reflecting on her journey, Erin acknowledges areas where she could have improved her health management, such as quitting smoking and maintaining better hydration and exercise routines. She aims to share her story to help others avoid similar mistakes, encouraging them to quit harmful habits for better health outcomes.

Erin’s narrative emphasizes the importance of self-advocacy, thorough research, and persistence in seeking accurate diagnoses and effective treatments. She concludes with an inspiring message: never give up and continue fighting for one’s health, as life holds immeasurable value despite the challenges faced.

Name:
- Erin R.
Diagnosis:
- High Grade Serous Ovarian Cancer
Staging:
- Stage IIIc
Initial Symptoms:
- Vaginal bleeding
- Multiple gastrointestinal symptoms
Treatments:
- Surgery
- Chemotherapy

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

Thank you for sharing your story, Erin!

Inspired by Erin's story?

Share your story, too!

Laurie’s treatment regimen started with chemotherapy and a monoclonal antibody, which successfully reduced the tumors after 6 rounds. However, her cancer relapsed, and she explored additional treatment options, including a clinical trial using an HDAC inhibitor (therapy that helps control how cancer cells grow and divide by affecting the cancer cell DNA). It initially stabilized the cancer but ultimately failed after 11 months. Consequently, Laurie turned to alternative therapies, including radioimmunotherapy (delivering high dose radiation directly to the tumor cells) and a more aggressive chemotherapy regimen, but these also proved unsuccessful.

In 2011, Laurie enrolled in a clinical trial for a Pi3 kinase inhibitor (a treatment that works to block a pathway cancer cells use to grow and survive that can slow a cancer’s growth and help keep it under control), which kept her cancer stable for over 5 years, albeit not fully eliminating it. During this time, she learned about CAR T-cell therapy, a cutting-edge treatment using a patient’s own T cells to target cancer cells. While initially not available for follicular lymphoma, CAR T-cell therapy became an option for Laurie in 2018. She consequently underwent the procedure — a remarkable 7th line of cancer treatment. As a result, she achieved remission for the first time in 12 years. As of 2024, Laurie has remained cancer-free. Her oncologist considers her cured, as her CAR T-cells continue to be detectable in her system.

Throughout her treatment journey, Laurie faced numerous challenges, including the side effects of chemotherapy, radiation, and steroids. She developed avascular necrosis, which required hip surgery, a consequence of long-term steroid use. However, despite these struggles, Laurie’s battle with cancer transformed her into a passionate patient advocate. She now works with 3 nonprofits, helping others navigate cancer treatment and advocating for more accessible and less potentially toxic therapies like CAR T-cell therapy. Laurie emphasizes the importance of finding a specialized oncologist, self-advocacy, and the value of second opinions and clinical trials in managing cancer.

Laurie’s story underscores the evolving landscape of cancer treatment, particularly in the context of immunotherapy. She highlights the importance of staying informed and advocating for oneself or having someone advocate on their behalf, especially as new therapies emerge. Through persistence, resilience, and research, Laurie continues to support others facing similar battles. She shares her journey to inspire hope and grow awareness.

Name:
- Laurie A.
Age at Diagnosis:
- 46
Diagnosis:
- Follicular lymphoma
Staging:
- Stage 4
Initial Symptoms:
- Frequent sinus infections
- Dry right eye
- Fatigue
- Lump in abdomen
Treatment:
- Chemotherapy
- Targeted therapy
- Radioimmunotherapy

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

Thank you for sharing your story, Laurie!

Inspired by Laurie's story?

Share your story, too!

Throughout his ordeal, Oya leaned on his love for music, particularly hip-hop, to cope with the emotional and physical toll. Since his childhood, music had provided him a therapeutic escape and inspiration during difficult times. Oya’s faith in God and a love for laughter also played key roles in maintaining his positivity. Embracing humor, he founded the Hip, Hope, Hooray! Black Men Talking Health Podcast to share his experiences and spread joy.

Over the 7 years since his diagnosis, Oya has experienced a significant improvement in his quality of life. He attributes this to positive thinking and appreciating life’s small joys. He remains acutely aware of life’s precious moments, determined to make the most of his time.

Driven by his experiences, Oya became a patient advocate, founding the Health, Hope, & Hip-Hop Foundation. His goal is to address disparities in cancer treatment and use hip-hop as a positive force for change. As a speaker and presenter at the 2024 American Society of Hematology (ASH) meeting, roles typically held by doctors, clinicians, and researchers, Oya presented findings from a discussion on healthcare disparities faced by multiple myeloma patients of color in the U.S. He helped to propose actionable solutions, focusing on improving health equity for multiple myeloma patients.

It wasn’t a short road to becoming one of the three patients who are lead authors on this paper – it started with many meetings, conversations, and showing up in person to take part at two health equity summits where they, doctors, researchers, and other advocates met to discuss the huge subject of how to improve access to care and healthcare outcomes for multiple myeloma patients, especially those in the Black/African-American community. They poured countless hours into what would become a very synthesized version of their discussions – this ASH paper and presentation.

Oya’s story is one of resilience and advocacy, as he continues to contribute to the myeloma community and inspire others. With a firm belief in turning adversity into triumph, he exemplifies the power of choice — choosing to be an overcomer rather than a victim. He works tirelessly to make a difference in the lives of others facing similar challenges.

Name:
- Oya Gilbert
Diagnosis:
- Multiple myeloma
Staging:
- Stage 1
Initial Symptoms:
- Fatigue and malaise
- Bone and back pain
- Foam in his urine
- Passing out

Thank you to Pfizer for their support of 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

Introduction
From fatigue and pain to a multiple myeloma diagnosis
Reaction to his experience
Becoming a patient advocate

You can make a choice. You can be either a victim or an overcomer.

Introduction

My name is Oya Gilbert. I’m the father of two boys and one girl.

I was diagnosed with multiple myeloma in 2017. It’s been 7 years since my diagnosis.

I love music. I grew up listening to hip hop; I can say that it’s a way of life for me. Music for me is cathartic, I’ll turn on a track I love and I can zone all the way out. Music was a way for me to escape tough moments in my childhood and create a new reality.

From fatigue and pain to a multiple myeloma diagnosis

Initial symptoms

My story started back in 2015 with fatigue and feeling weird. That was when I learned the difference between being tired and fatigued. I had never really been sick up to that point, and hadn’t even had a broken bone, and I am a high-energy kind of person, so I knew something was wrong. My sleep times would last as long as 10 or 11 hours a night, and even when I would go to work, I would nap for 20, 30 minutes.

I started seeing a lot of foam in my urine and also began to experience bone and back pain. I would be up at 12 midnight to about 4 a.m. with that pain, which would sometimes be tremendous, and I even passed out a couple of times in front of my children.

The term I use to refer to these experiences is “episodes”. These episodes progressed from that point. They would happen maybe once or twice every few months, and then they started happening more frequently, once a month, and then once a week.

Diagnosis

So I started trying to figure out what was wrong with me. I went to see the different specialists in my area. I live in a very rural area, and my community is predominantly older than I am and White. The doctors I consulted couldn’t tell what was wrong with me.

I would tell those doctors that as much as possible, I didn’t want to take medication because I didn’t want to be addicted to anything. But they didn’t really listen to me. They gave me the wrong medication and actually labeled me as having anxiety and being a hypochondriac. I tried taking the anxiety meds but they actually led to my getting into an accident, after which I stopped taking them. The specialists were at least able to tell me what I didn’t have, which was wonderful. But on the other hand, I just kept getting sicker.

I had a full-time job and was trying to work, but it was such a struggle. Depression wasn’t a concern, but I was feeling hopeless — and it got to the point that I actually thought I was going to die. I even called up my insurance company to try and increase my insurance policy.

Eventually, they finally did discover what was wrong with me, that I had multiple myeloma in my blood. Thankfully, I was in stage 1, maybe borderline stage 2, and didn’t have a lot of lesions and things of that nature.

After this diagnosis, the doctors were able to set me on the right path. But it took about 2 years for that to happen.

My experience has led me to immerse myself in the cancer realm, be part of the solution, do more for others, and become an advocate.

Reaction to his experience

I was just very blessed to not have passed away from this illness before I was diagnosed and it could be treated. But I was certainly on the way to that point.

People shouldn’t have to go through those different types of scenarios in this day and age. People should be able to be diagnosed in the early stages and not have to go through what I went through.

I describe my experience as deflating because the doctors I was seeing didn’t really listen to me and it took a long time before they finally diagnosed what I had as multiple myeloma. The health care providers I consulted didn’t seem to be educated enough about my cancer, and maybe not regarding cancer in Black people.

And when I was diagnosed, it was a bittersweet moment. On one hand, I could tell everyone, see, I really did have something serious. But on the other hand, as we all know, multiple myeloma is incurable. And so that touched off a whole new set of emotions and opened up new directions for my life.

But that being said, I’ve stayed positive and tried to stay happy. It comes partly from my faith in God. But it also comes from my love of laughter. I think laughter is the greatest medicine God created. And so I’ve channeled my love of humor into a podcast I host, the Hip, Hope, Hooray! Black Men Talking Health Podcast.

My diagnosis has also made fatherhood a little challenging, because there are such age gaps between my kids; my youngest son was 3 when I was diagnosed, while my oldest boy was 10, and there’s my daughter who’s older still. This meant that I had to have a different conversation with each one. I had to keep it from my oldest son because I didn’t think he could handle it back then. Obviously, my youngest boy didn’t know what was going on, only that his dad was in the hospital.

As I mentioned earlier, it’s been 7 years since I was diagnosed and my treatment started. My quality of life has improved. I’ve been somewhat healthy. And because I’ve been around for that length of time after my diagnosis, I’ve managed to experience many things. For instance, I’ve been able to walk my daughter down the aisle.

Cancer changes your entire perspective of life — every aspect of it. When you get cancer, you reach out and grab on to anything positive to help keep you out of that rabbit hole of agonizing over cancer. I appreciate all the little things, things we take for granted, even things like using the bathroom.

I now say that I’m very conscious of everything around me. I’m acutely aware of the importance of cherishing the moments and doing as much as we can while we’re still here. I’m going to do as much as I can while I’m healthy-ish.

Becoming a patient advocate

Setting up the Health, Hope, & Hip-Hop Foundation

Ultimately, I’m trying to learn more about my cancer, including how the disparities in knowledge and expertise that I experienced affect others too. My experience has led me to immerse myself in the cancer realm, be part of the solution, do more for others, and become an advocate.

The advocacy bug actually bit me so hard that I decided to move the needle a little bit more and start a foundation as well: the Health, Hope, & Hip-Hop Foundation.

I’ve mentioned that I’m really into music, especially hip hop. Hip-hop has touched every facet of the planet, but it’s sort of underutilized as a force for change, because we haven’t always used it for positive things. And that’s how my foundation came to be, using hip-hop, since it’s such a powerful tool that touches everyone and which so many people are already into.

It’s just like a super bright light bulb came on in my head and I went, okay, let me see if I can put something together. And it took a lot of people to help me get to this point, for which I am very grateful.

I am blessed with the opportunity to have a seat at the table and make a difference as a Black American, a member of the Black and Brown community.

The Honor of Presenting at the American Society of Hematology (ASH) meetings – as a Patient

Editor’s note: The ASH meeting is an annual gathering of tens of thousands of health care professionals from around the world, where they are selected to share clinical updates, therapies, and practice strategies in myeloma research. Oya was one of three patients to lead this particular paper and presentation, which is a rare position held by patients for ASH.

I’m proud to have [presented] in 2024 ASH meetings, the latter of which was held just last December. I [helped to lead] a paper and presentation entitled “A Patient Perspective on Actionable Steps to Address Disparities in Healthcare Among US Patients with Multiple Myeloma.”

The session tackled the findings of two multiple myeloma Health Equity Summits, which gathered patients, advocates, and healthcare professionals to discuss and address disparities in multiple myeloma treatment. We identified key issues, including:

Delayed diagnoses due to lack of awareness
Cultural biases in healthcare
Limited access to specialists.

We proposed solutions such as:

Enhancing provider training
Expanding support groups
Improving health literacy through clear, accessible information.

And we also made other recommendations, including using telehealth, reducing referral biases, and increasing diversity among providers to foster trust.

So the focus was on patients’ perspectives on actionable items to address disparities in health care among patients with multiple myeloma. And what we wanted to get out of this was to figure out how we could increase health equity. And so we poured all the data and ideals we had into a bucket, and decided which ones to prioritize.

Thanks to these discussions, we put together actionable steps for healthcare professionals and policymakers to improve equity in multiple myeloma care.

I am blessed with the opportunity to have a seat at the table and make a difference as a Black American, a member of the Black and Brown community. We need to take advantage of these opportunities.

You can make a choice. You can either be a victim or an overcomer.

Follow Oya’s work with the Health, Hope, & Hip-Hop Foundation.

Special thanks again to Pfizer for their support of our patient education program! The Patient Story retains full editorial control over all content.

Thank you for sharing your story, Oya!

Inspired by Oya's story?

Share your story, too!

Courtney shares her journey facing grade 3B follicular lymphoma, diagnosed in 2022, and her subsequent treatment and ongoing battle with the disease. Initially, she experienced severe back pain, sinus issues, and fatigue, which led to her diagnosis of follicular lymphoma after a visit to urgent care revealed a large mass in her chest. That diagnosis was a shock to her and her husband, with Courtney feeling overwhelmed while her husband took charge of scheduling appointments and managing logistics.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Courtney started chemotherapy soon after her diagnosis, enduring 6 rounds of treatment. The process was grueling, and she vividly recalls the emotional and physical toll it took, including the distress of losing her hair. Despite the hardships, she acknowledges the critical role her care team played, particularly her oncologist and the doctor from urgent care, both of whom provided essential support.

After treatment, Courtney reached remission, but the high-risk nature of her disease requires her to be vigilant about her health. She has regular check-ups and contemplates possible future treatments like CAR T-cell therapy. Throughout this journey, she emphasizes the importance of community support, expressing deep gratitude for her family and friends who have been there for her, and who have provided welcome emotional and practical assistance.

Courtney also discusses the psychological impact of her diagnosis, sharing her need to talk about cancer as a way to cope and bring awareness. She hopes that by sharing her story, others will understand that cancer can happen to anyone and stresses the significance of early detection.

Looking forward, Courtney remains hopeful, drawing strength from advancements in medical research and the support of her loved ones. She advises others in similar situations to document their journey, capturing every moment, because it becomes an integral part of their identity. Her message to others is one of resilience and hope: while cancer is challenging, it is not insurmountable, and individuals can find a way through it with the right support and mindset.

Name:
- Courtney L.
Diagnosis:
- Follicular lymphoma
Grade:
- Grade 3B
Initial Symptoms:
- Intermittent back pain
- Sinus issues
- Hearing loss
- Swollen lymph node in neck
- Difficulty breathing
Treatment:
- Chemotherapy

Thank you to Genmab for their support of 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

Introduction
Pre-diagnosis
- Initial symptoms
Diagnosis
Reaction to the follicular lymphoma diagnosis
Treatment for follicular lymphoma
- Loss of hair
Post-treatment
The importance of community
Advice Courtney offers
More Follicular Lymphoma Stories

Follicular lymphoma is not the end of the world.
It might feel like it, but it isn’t.

Introduction

My name is Courtney and I currently live in Wisconsin.

I was diagnosed in 2022 with grade 3B follicular lymphoma. I also have a triplet mutation.

Pre-diagnosis

Initial symptoms

I really didn’t start feeling sick or off for too long. My first sign that something wasn’t right was just 2 months before my diagnosis, in December 2021. I started having really bad back pain. It wasn’t present all the time, but when I did have it, it was severe — sharp, stabbing pain in the shoulder area.

I also started having shortness of breath and a lot of sinus issues. My nose was draining constantly. No amount of blowing would stop it. I also began to lose hearing in my left ear. I’d wake up in the morning and would be basically deaf in my ear. And then it would take a couple of hours to get the hearing back. And then that cycle would just repeat.

I also started to feel very tired, and talked about it to one of my coworkers at one point. I said, really wish I knew what was going on, because I shouldn’t be this tired.

One night in January, I woke up out of a deep sleep, and I can’t recall what woke me up, but I remember thinking, oh my gosh, I think I had a stroke. The next morning, I told my colleagues about it, and one of them took me to the emergency room. There, they scanned my brain and head, and they diagnosed me with a complex migraine and a panic attack. Because I have a history of anxiety and migraines.

Some time after that, I took a trip to Mexico. I woke up one morning, and I had a huge swollen lump on my neck, and nobody knew what it was. And I spent that whole week Googling “swollen neck” and trying to find out what it could possibly be. Plenty of what I found online said it could be cancer. But I convinced myself that it wasn’t, because the internet is going to tell you the worst thing.

But then I began to struggle to take the stairs — even just one flight of stairs was a challenge. And then even when I got back to Chicago, the pain continued to be a concern. I told myself, I’m going to go to urgent care because I go back to work on Monday. If I don’t go now, I’m not going to go. So I went to urgent care.

Diagnosis

When I was at urgent care, the doctor did some lab tests, and then sent me to the hospital. She told me, you should just go get a scan so we can just see what it is. She added, I will call you personally in a couple of hours to give you an update. So my labs came back while I was waiting for the scan. My platelets were slightly high, and everything else was fine.

But she called me a couple hours later — and she said that there was a large mass in my chest. She didn’t even tell me about my neck. You have to go back to the hospital, she said. At that point, I still didn’t know that meant cancer.

So, on February 12, 2022, I went to a different hospital to be admitted. The radiologist met me in the lobby and brought me directly to my room. And there he told me, you have follicular lymphoma.

I went, I don’t know what that means. He explained it, and then tried to reassure me by saying that I met the criteria for Hodgkin’s lymphoma, “the good kind”, thanks to my age and gender, and he said that I could have the mass biopsied in the morning. So I had some sense of hope.

But as it turned out, none of that was accurate, and I ended up with a kind of non-Hodgkin’s lymphoma instead. Mine is an aggressive, rare, incurable kind of cancer.

I can’t not talk about cancer.
It’s a part of me now. It’s a part of who I am.

Reaction to the follicular lymphoma diagnosis

When we received the diagnosis, my husband and I were just in shock. But between the two of us, he’s the one who rallies when he receives tough news, and I’m the one that falls apart. I might not feel like getting out of bed or the shower, I might say that I’m down, I’m done, I need some time.

So rally he did. He was at the counter scheduling the appointments. He was taking time off from work to drive me around. I didn’t have to worry about any of that, which was good because I couldn’t do it at the time. So that was great. That was everything that I needed.

As for my kids, I hate that for basically their whole lives, I will be sick. They’re not going to know any differently. But it will be all they know because they were so young when this all began. To look at it like in a good light, they were so young at the outset that they didn’t really know the difference.

Treatment for follicular lymphoma

After my diagnosis, there was no time to waste. They told me I needed chemotherapy right away. And I didn’t really have a choice — I mean, of course I could say no, but if I did, I was going to die. Within the 2 months that they thought that I had cancer, it had spread over my entire body.

I only remember a couple of things about the initial appointment at the cancer center, because I was still on pain mediciness back then. I couldn’t retain anything from that time because of my meds. I’m so thankful for my care team, my oncologist and the doctor who initially saved my life in urgent care. She’s now my primary care doctor. They are my people, they are everything to me.

I had surgery on the 13th of February. I had my PET scan, my port placed, and my bone marrow biopsy done, all within days. And then I started chemotherapy within a week.

I did a total of 6 rounds of chemotherapy. And although it was okay at first, after that, it wasn’t fun. It didn’t feel good. I would go home after my treatment, and that’s where I would get pretty sick afterwards. If I wasn’t at the cancer center, I wasn’t getting out of bed. But I think everybody who takes chemo responds to it differently.

Looking back at it, I wish they could have given me a checklist, some sort of record that I can refer to, because you want to remember experiences like that, you want to go back and know what you went through. But I do recall looking back and realizing how distraught I was. I was a wreck. And I also remember saying — am I going to die? I do know now that cancer is not a death sentence if you catch it early enough.

I did ask for statistics, numbers, but the doctor didn’t have them. She did say, though, that I would lose my hair. And that made it worse.

Why me? And why at this age? I don’t think I’ll ever stop thinking and asking that.
But it’s not just about me.

Loss of hair

The nurse practitioner I spoke with did the cancer 1-on-1 with me. She said, you will lose your hair with this. And that’s exactly what happened.

I woke up one morning after the first cycle, and my hair was just coming out. All I needed to do was touch it and it would come out in clumps, just clumps at a time. And that was really difficult for me because I have a lot of long hair.

We ended up just shaving it off. If I didn’t, it would hurt like crazy.

It was one of the worst days. But the hair does grow back.

Post-treatment

After my 6 chemotherapy rounds ended, I was thankfully in remission. But my follicular lymphoma is extremely high-risk, and this has affected my life even after my chemotherapy has concluded.

My last appointment or couple of appointments would have been 2 years out from the initial chemo session. My oncologist seemed to be on the verge of saying that we could start to space out the appointments since I was already at the 2-year mark, which is a big thing for us cancer patients, and maybe we could start seeing each other less. But then he checked himself and said, we can’t change your treatment schedule, because you really are too high-risk.

So now I’m 2 and a half years out from chemo, and that’s just great. But it does take a toll on me. Some days I feel that at my next check I’ll find that I’ve relapsed. Other days I’m more positive and I think, look, I’ve made it this far, I’ve beat all the odds.

It’s hard, it just depends.

Coping with her situation and helping others

When I’m having a really bad day, I let myself have a bad day. I know when my situation is overwhelming me. And when it comes to that, I just talk about it.

I can’t not talk about cancer. It’s a part of me now. It’s a part of who I am. And I don’t know if my need to talk about it is due to fear for other people or fear for myself.

The research out there says that it’s devastating for people my age. It’s a matter of catching it before it gets too late. So I want to bring awareness to the people around me who don’t think that cancer can touch them.

I used to not know what cancer was. Cancer is cancer, I thought, there’s no differentiation between the different sorts. Boy, was I wrong. There’s so much I don’t know about it yet.

So I try to talk about it in a way that can help other people, not just myself.

I have so many people around me whenever I need them.
I couldn’t ever have done this by myself.

Being diagnosed with cancer at a young age — and looking forward

Why me? And why at this age? I don’t think I’ll ever stop thinking and asking that.

But it’s not just about me. I also want to know why lots of people around me have been diagnosed with cancer recently, all different kinds of cancers. And none of them are better or worse than the other one. Some of my friends who have been diagnosed with different kinds of cancer have gone through worse treatments than I have. And hopefully, they will be cured.

I end up thinking, at least I don’t have to go through all those treatments like they are. But my case is different. The next step for me is a transplant, not more chemotherapy. I did ask about maintenance chemo and they said it wouldn’t be any more beneficial. I asked about genetic testing, too, because I’d also like to know if my kids need to be worried about this.

I’m young and I think my youth has helped me a great deal. My age has been on my side in this struggle. I also do know that grade 3B follicular lymphoma itself is extremely rare and is not treated as a normal lymphoma. And that’s where the difficulty lies. Determining the next steps and even navigating life itself now.

You don’t get many 30 year olds who have gone through this before. At my halfway chemo point, some people might have been clean at that point, and we were shocked that I hadn’t made progress. But I have hope that things will change. I see lots of research happening all the time across different areas. And though it is such a small percentage of people that have this, and the research isn’t being funneled my way, I hope that my time will come.

For example, I recently learned about CAR T-cell therapy. I got excited at the thought that maybe this would be my next step if I did relapse. It’s FDA-approved worldwide. It could work for me. So I have hope.

The importance of community

I have so many people around me whenever I need them; I couldn’t have ever done this by myself. I don’t think anybody can, so I just feel very lucky for all of it.

You can’t do this alone. And I am very lucky for everybody that I have around me, that listens to me, that lets me talk, lets me cry. That gives me a hug when I need it. That drops everything for me, takes me to appointments. My husband, my kids, my family, my friends, everybody.

I just I get emotional thinking about thinking about them all. I really am very lucky.

I don’t want to discount the things that I’ve gone through.
Because my experience wasn’t pleasant, but I’m all the better for it.

Advice Courtney offers

Record everything, including the first appointment, because you’re not going to remember it. Record yourself. Take photos. Even now, my brain doesn’t remember everything, so I keep on recording.

I don’t want to forget this part of my life, because it’s who I am now. I don’t want to discount the things that I’ve gone through. Because my experience with follicular lymphoma wasn’t pleasant, but I’m all the better for it.

I just hope that even 1 person hears me eventually and understands that it can happen to you, even if you don’t know what follicular lymphoma is and that there are different kinds of lymphoma, or even if you’re not aware of the basics of cancer.

Follicular lymphoma is not the end of the world. It might feel like it, but it isn’t. Yeah, you can be okay.

Special thanks again to Genmab for their support of our patient education program! The Patient Story retains full editorial control over all content.

Thank you for sharing your story, Courtney!

Inspired by Courtney's story?

Share your story, too!

Early Testing Could Have Changed My Colorectal Cancer Story—Don’t Ignore the Signs

Nicola is a mother and anesthetic technician who loves traveling and spending time with her dogs, cat, and 2 children. In 2020, doctors diagnosed her with colorectal cancer. By the end of 2021, she learned that her colorectal cancer had become stage 4 and had metastasized to her brain. After undergoing a craniotomy, she has been in remission for 9 months.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Initially, Nicola experienced rectal bleeding. Doctors thought it was nothing more than hemorrhoids, but eventually, they conducted a colonoscopy. The surgeon found a 4-cm tumor and performed surgery just before Christmas, and also discovered that 4 of her lymph nodes tested positive for cancer cells. She then underwent adjuvant chemotherapy, which is treatment to keep cancer from returning.

With no significant family history of cancer, although her father also had bowel cancer, Nicola’s case involved a non-BRAF, wild-type adenocarcinoma. Her chemotherapy initially made her very sick, leading to weight loss and hospitalization. Eventually, she switched treatments and completed 5 rounds before doctors declared her NED (No Evidence of Disease) for her stage 4 colorectal cancer.

Months later, Nicola began to experience symptoms such as profound migraines and vision changes. These led to the discovery of a large brain tumor; her original cancer had metastasized to her brain. She promptly underwent a craniotomy, which was deemed successful. Afterward, she received targeted radiation therapy, which thankfully did not significantly affect her vision.

Nicola remains under high-risk monitoring. She advocates for personal vigilance and early testing, sharing that she might have pushed for a colonoscopy sooner despite her age, had she known that younger people can get colorectal cancer. Now, she focuses on being present with her family and friends, and cherishes each day with gratitude.

Name:
- Nicola H.
Diagnosis:
- Colorectal cancer 2020
- brain cancer
Staging:
- Initial stage 3 in 2020
- Metastasized to her brain in 2021 (stage 4)
Initial Symptoms:
- Bleeding, pain (Colorectal cancer)
- Focal migraines (Brain cancer)
Treatments:
- Chemotherapy (Colorectal cancer)
- Radiation (Brain cancer)

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

Thank you for sharing your story, Nicola!

Inspired by Nicola's story?

Share your story, too!

Scott’s Stage 3 Rectal Cancer Story

Scott’s stage 3 rectal cancer diagnosis stemmed from an annual physical where his doctor discovered blood in his stool. A follow-up colonoscopy revealed a tumor, even though he showed no other symptoms. This marked his second battle with cancer, having previously overcome testicular cancer in 1988 through surgery and radiation.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Scott emphasizes the importance of trusting his medical team and their treatment strategies. During his second cancer journey, the COVID-19 pandemic added complications. Despite initial fears about visiting healthcare facilities, he felt safer at his treatment center, the White Plains Cancer Center, due to the strict precautions in place due to the pandemic. His treatment began with chemotherapy, which eliminated the tumor before surgery became necessary. Though he managed chemotherapy with minimal side effects, radiation in 2021 proved more challenging, causing significant weight loss.

In April 2023, scans revealed lingering rectal cancer cells, requiring surgery. Scott underwent ileostomy surgery, lived with an ostomy bag for three months, and later had a reversal. Despite these challenges, he maintained an active social life, attending live music events even with the ostomy bag. He shares practical advice about handling the bag, emphasizing the importance of not letting it restrict one’s life.

Scott credits his positive mindset as being crucial to his resilience. He utilized visiting nurse services early in his recovery to gain confidence in managing his care independently. By staying focused on treatments and continuing activities he loves, he manages to find joy amidst adversity. His healthcare team, friends, and love for live music have been vital in keeping him motivated.

As a proud 2-time cancer survivor, Scott openly shares his experiences to inspire others. His closing message underscores the mantra that has guided him through both cancer battles: “Trust your team and trust the treatment.”

Name:
- Scott M.
Diagnosis:
- Rectal cancer
Staging:
- Stage 3
Age at Diagnosis:
- 63
Initial Symptoms:
- Blood in stool
Treatment:
- Chemotherapy
- Surgery (ileostomy)
- Radiation

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

Thank you for sharing your story, Scott!

Inspired by Scott's story?

Share your story, too!

Bladder Cancer Awareness: A Firefighter’s Story

The Many Faces of Bladder Cancer: Voices of Strength and Resilience

The Power of Perseverance and Self-Advocacy in Growing Bladder Cancer Awareness: Lonnie’s Story

Introduction

Lonnie’s Background

Life as a Firefighter and EMT

My First Symptoms

Advocating for myself

Diagnosis and Treatment

Chemotherapy

Treatment experience

Surgery

The impacts of surgery

Frustrations and Self-Advocacy

Cancer Advocacy to Build Bladder Cancer Awareness

Why Lonnie Keeps Going

Advice Lonnie Offers

Find Support

Be There for Others

More Patient Stories

Bladder Cancer Resources

Gianna’s Rare Desmoplastic Small Round Cell Tumors (DSRCT) Story

Inspired by Gianna's story?

Related Cancer Stories

More Desmoplastic Small Round Cell Tumors (DSRCT) Stories

Tom’s Stage 2 Prostate Cancer Story

Inspired by Tom's story?

Related Cancer Stories

More Prostate Cancer Stories

Shawn’s Stage 4 Colorectal Cancer Story

Inspired by Shawn's story?

Related Cancer Stories

More Colorectal Cancer Stories

Erin’s Stage 3C High Grade Serous Ovarian Cancer Story

Inspired by Erin's story?

Related Cancer Stories

More Ovarian Cancer Stories

Laurie’s Stage 4 Follicular Non-Hodgkin Lymphoma Story

Inspired by Laurie's story?

Related Cancer Stories

More Follicular Lymphoma Stories

Hip-Hop, Hope, and Health: Oya Gilbert’s Multiple Myeloma Story

Introduction

From fatigue and pain to a multiple myeloma diagnosis

Initial symptoms

Diagnosis

Reaction to his experience

Becoming a patient advocate

Setting up the Health, Hope, & Hip-Hop Foundation

The Honor of Presenting at the American Society of Hematology (ASH) meetings – as a Patient

Inspired by Oya's story?

Related Cancer Stories

More Multiple Myeloma Stories

From Shock to Strength: A Young Mom’s Follicular Lymphoma Story

Introduction

Pre-diagnosis

Initial symptoms

Diagnosis

Reaction to the follicular lymphoma diagnosis

Treatment for follicular lymphoma

Loss of hair

Post-treatment

Coping with her situation and helping others

Being diagnosed with cancer at a young age — and looking forward

The importance of community

Advice Courtney offers

Inspired by Courtney's story?

Related Cancer Stories

More Follicular Lymphoma Stories

Early Testing Could Have Changed My Colorectal Cancer Story—Don’t Ignore the Signs

Inspired by Nicola's story?

Related Cancer Stories

More Colorectal Cancer Stories

Scott’s Stage 3 Rectal Cancer Story

Inspired by Scott's story?

Related Cancer Stories

More Rectal Cancer Stories

Join Our Community