Author: Chris Sanchez

Stage 3B Follicular Lymphoma: Hayley’s Patient Story

Post author By Chris Sanchez
Post date March 10, 2025
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March 10, 2025

Stage 3B Follicular Lymphoma: Hayley’s Patient Story

Hayley, a nurse from Missouri, shares her experience after being diagnosed with stage 3B follicular lymphoma. Her story started when she experienced an intermittent sensation of pressure above her collarbone or clavicle, which she attributed to a pulled muscle due to home renovations.

However, when she saw a significant lump in her neck and started wheezing while breathing, those first symptoms changed her mind, motivating her to seek medical advice. A chest X-ray revealed an unusual widening in the center of her chest. With her medical background, she decided to advocate for herself, leading her to insist on a CT scan.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Hayley found the diagnosis surreal, especially considering her age and the absence of major symptoms. All of a sudden, she found herself on the receiving end of news she was accustomed to delivering in her professional capacity. Her doctor revealed the presence of a chest mass and tumors, suggesting the likelihood of lymphoma. Initially, an oncologist indicated it might be Hodgkin’s lymphoma, known for its high cure rate, but further tests confirmed it was a rare and aggressive form of follicular lymphoma.

Facing the reality of her stage 3B follicular lymphoma diagnosis, Hayley leaned on her medical connections to seek a second opinion at the Siteman Cancer Center. While initially resistant, she appreciated the proactive support from her family.

Adjusting to her new reality, Hayley transitioned from documenting her emotions in a diary to sharing her experiences on her social media, finding solace in connecting with others. She underscores the importance of maintaining a positive mindset in the face of her stage 3B follicular lymphoma diagnosis, emphasizing that it is not a solitary battle. Hayley acknowledges the physical toll of treatment, yet appreciates the opportunity to find her way through, highlighting the resilience cancer patients must foster. Her story serves as a testament to the strength and determination needed to navigate such an unexpected life challenge.

Name:
- Hayley H.
Age at Diagnosis:
- 30
Diagnosis:
- Follicular Lymphoma
Stage:
- Stage 3B
Symptoms:
- Intermittent feeling of pressure above clavicle
- Appearance of lumps on the neck
- Mild wheeze when breathing and seated in a certain position
Treatments:
- Surgery
- Chemotherapy

Thank you to Genmab for supporting our patient education programming. 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
Before My Diagnosis
My Test Results and Diagnosis
Next Steps
My Actual Diagnosis and My Reaction to It
What Keeps Me Going

My biggest thing with cancer in general is that you’re not alone.

Introduction

My name is Hayley. I’m from Missouri. I work in an emergency room as a nurse.

I was diagnosed with stage 3B follicular lymphoma.

Before My Diagnosis

I was diagnosed on October 23, 2024. My story starts about three and a half weeks before that.

We were working on our flooring in the house when I felt this pressure on the side of my neck, deep down, above my clavicle. It felt like someone was pushing on my throat. It wasn’t like a sore throat or a lump in my throat. I would take my shirt off, and as soon as my hands would go above my head, it felt like something was choking me. If I was lying down in a certain position, I would feel the same thing.

I chalked it up to a pulled muscle or something because we were working on our flooring. The pressure was there for about three weeks, and it would come and go, so I kept writing it off.

When I woke up one morning, there was a massive, golf ball-sized lump, so I realized it wasn’t a pulled muscle. I also felt like I was wheezing when I breathed out.

I called my primary and got in that day with a nurse practitioner. They pushed on my throat to see if it was my thyroid. They also requested blood work and ordered a chest X-ray. They called me later that day and said, “The X-ray shows a widening of your mediastinum and we’re concerned that there might be a chest mass.” I called the hospital where I work and said, “I’d like to get a CT,” because I wasn’t going to bed thinking that I had a chest mass.

I thought, this can’t be real. It was like every fear that I ever had was coming to reality. And — I’m only 30. How is this happening?

My Test Results and Diagnosis

Being on the “other side” was surreal. I requested that CT from my colleagues. I work with one particular doctor all the time and usually, I’m the person standing beside him and giving these diagnoses.

The doctor sat down beside me on a stool and started crying. He went, “You have a bulky chest mass and two tumors here and one in your abdomen. It’s very probable that you have lymphoma.”

I looked at my boyfriend and said, “Are you hearing what I’m hearing? This can’t be right. I’m 30 and I feel invincible. I feel so healthy. I don’t have symptoms. What are you talking about?” When the doctor used the word “cancer,” it shook me. I said, “No way.”

I thought this can’t be real. It was like every fear that I ever had was coming to reality. I’m only 30. How is this happening? The patients I see are much older — 75, 85, 90 years old. I couldn’t help but think, “What did I do wrong? How did I get this? What could I be doing that could have caused this?”

Next Steps

I went to the oncologist the following day and he told me, “With your age and how you’re presenting, it’s probably Hodgkin lymphoma, which has a 98% cure rate,” so he got my hopes up. He said that I needed to have a biopsy done. He also said, “You’re going to lose your hair.” But as it turns out, it wasn’t Hodgkin.

I have family who know people at the Siteman Cancer Center downtown. It’s one of the top cancer centers in the country, especially for lymphoma and stem cell transplants. They urged me to get a second opinion from a lymphoma specialist. I was grateful for the advice, but I trust the people I work with; the doctor knows what he’s doing. He already seemed confident in what my treatment would be. If it turned out to be something very rare, he’d send me to a specialist.

But as it turns out, they went behind my back and called Siteman for a favor. Siteman called me on a Tuesday and said, “We can get you in tomorrow.” I was happy because being treated there would be like a dream come true.

There is a way to get through it, and that’s through keeping a positive mindset when you can.

My Actual Diagnosis and My Reaction to It

After I had my check-up, the doctor called and said, “You have follicular lymphoma, stage 3B.” I thought, “What are you even talking about? What is 3B? I thought we were done.” We knew it wasn’t Hodgkin — it was non-Hodgkin and we also knew that it was follicular.

Follicular lymphoma is usually a slow-growing, or indolent cancer, but stage 3B is fast-growing. I have a fast-growing follicular lymphoma that’s super rare and aggressive.

Back then, I was writing in my diary every day about all of the emotions I was experiencing. I did that for nine days, which was the worst period, and I haven’t looked at it since. I made an Instagram and TikTok, and transitioned to using them instead since they’re much easier to use. But I’m glad I tried writing in a diary because I couldn’t relive that experience if I tried. I suspect I have a mechanism in my head that almost blocks it all out.

What Keeps Me Going

I feel like other cancer patients would feel the same way I feel — like you don’t have a choice. You put one foot in front of the other, and you don’t have a choice beyond that. You go through the motions and all you see is the next step. How am I going to get to the end of it? Whatever I have to do to be healthy again is enough for me to keep going.

I do feel bad for my body. I try and take such good care of it and yet I keep putting toxic stuff into it to try to deal with the cancer. But in the end, I appreciate being given the chance to fight. Other people don’t even get a chance to fight. They could get in a car accident or other catastrophic things could happen to them.

I also need to emphasize that once you get a cancer diagnosis, that’s not the end of it at all. If you can keep your mind positive, that would be great. I know it’s hard because I have my tough days for sure.

My biggest thing with cancer in general is that you’re not alone. It’s so isolating when you hear those words coming out of your doctor’s mouth: “You have cancer.” I felt like no one could understand what I was going through, that my life was over, and that I was never going to be the same.

Of course it’s not true. Everyone in every walk of life has to deal with something like this and can deal with it. It just makes you so much stronger mentally and physically.

There is a way to get through it and that’s through keeping a positive mindset when you can.

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

Thank you for sharing your story, Hayley!

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Shannin Finds Courage & Clarity Living With Stage 4 Colon Cancer

Post author By Chris Sanchez
Post date March 10, 2025
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March 10, 2025

Diagnosed at 26 with Stage 4 Colon Cancer, Shannin Finds Courage and Clarity

At just 26, Shannin faced a life-changing diagnosis: stage 4 colon cancer. Her journey began with months of severe abdominal pain, nausea, and vomiting—symptoms that were initially dismissed as food intolerance. But Shannin knew something wasn’t right. Refusing to settle for unanswered questions, she sought multiple medical opinions. It wasn’t until an urgent care visit that tests finally revealed the truth: lesions and a complete blockage in her colon.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Despite the prognosis from her oncologist, Shannin found determination to advocate for her health, pushing for immediate diagnostic tests and surgery. Surgeons successfully removed her tumor, reconnected her colon, and took out the affected lymph nodes and an ovary. Yet, cancer remained in her liver, leading to a treatment plan of chemotherapy and immunotherapy tailored to her tumor markers.

While dealing with the physical toll of stage 4 colon cancer, Shannin emphasizes the importance of mental resilience. Thinning hair, weight loss, and skin reactions to treatment have all challenged her sense of self. But through it all, she focuses on what matters most—cherishing every moment with her family and her husband, Cody.

Through genetic tests and tumor analysis, Shannin was matched with a specific immunotherapy, improving her treatment response. However, the financial burden and lack of access to advanced procedures in Canada posed challenges. She became a relentless advocate, proving that second opinions and persistence can open doors to critical treatment options.

Shannin’s narrative underscores the power of hope and self-advocacy. Her stage 4 colon cancer story should encourage others to pursue second opinions and be proactive in their care. And, above all, never abandon hope, as statistics don’t define a person’s path.

Name:
- Shannin D.
Age at Diagnosis:
- 26
Diagnosis:
- Colon Cancer
Staging:
- Stage 4
Symptoms:
- Severe pain where tumor blocked colon
- Vomiting after eating
- Weight loss
Treatments:
- Chemotherapy
- Immunotherapy
- 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, Shannin!

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An Annual Physical Exam Uncovered Tamara’s Symptom-Free Stage 4 Colon Cancer

Post author By Chris Sanchez
Post date March 3, 2025
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An Annual Physical Exam Uncovered Tamara’s Symptom-Free Stage 4 Colon Cancer

Tamara, a 50-year-old oncology infusion nurse, shares her symptom-free stage 4 colon cancer story. She has an APC gene mutation, leading to familial adenomatous polyposis (FAP), a condition that causes the growth of colon polyps and can result in a high risk of cancer.

March 3, 2025

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Unaware of her genetic predisposition and APC gene mutation, Tamara discovered her condition accidentally, after an annual physical revealed severe anemia despite her active, symptom-free lifestyle. A colonoscopy and genetic testing uncovered familial adenomatous polyposis (FAP) and stage 4 colon cancer, with metastases to her liver and lungs. Due to the gravity of her diagnosis, Tamara immediately began treatment, including chemotherapy and immunotherapy. Throughout all 12 treatment cycles, she experienced side effects such as neuropathy, fatigue, and hand-foot syndrome, but remained resilient and buoyed by her faith, family, and coworkers.

Tamara’s medical journey emphasizes the importance of early detection and genetic testing. Her children were tested for the APC mutation, leading to her son’s preventive surgery after he was found to have thousands of polyps. She underscores the significance of genetic testing, particularly for underrecognized conditions like FAP, and urges others to be vigilant about health changes.

Tamara’s faith, family, and determination drove her to keep working, stay active, and plan significant life events, including her wedding. Her stage 4 colon cancer story highlights the value of optimism, family and community support, and proactive health measures in overcoming adversity.

Name:
- Tamara G.
Age at Diagnosis:
- 49
Diagnosis:
- Colon Cancer
Staging:
- Stage 4
Symptom:
- None; bloodwork revealed severe anemia which touched off the diagnostic process
Treatments:
- Chemotherapy
- Immunotherapy

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, Tamara!

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Abby’s Stage 4 Melanoma Experience Underscores Empowerment and Self-Advocacy

Post author By Chris Sanchez
Post date March 3, 2025
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Abby’s Stage 4 Melanoma Experience Underscores Empowerment and Self-Advocacy

Abby, a firefighter paramedic from Arizona, shares her experience after being diagnosed with stage 4 melanoma, a form of skin cancer. This was her second experience with melanoma; during her college years, the discovery of a mole behind her ear had led to a diagnosis of stage 1 melanoma, which was successfully treated through surgery. Eight years later, a lump under her arm revealed that she had melanoma again and that that it was at stage 4 this time. Abby initially dismissed symptoms like monthly headaches and fatigue as dehydration. She only realized the severity of her condition after a biopsy afterwards confirmed the spread.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

With a strong support system comprising her family and her unwavering faith in God, Abby approached her stage 4 melanoma diagnosis pragmatically, refusing to let it define her life. Her dermatologist initially emphasized the seriousness of her condition due to numerous tumors, including a significant one in her brain. But she subsequently maintained her composure and chose to focus on the positive aspects of her health.

Abby’s treatment plan, which combines radiation and immunotherapy drugs, began in 2023 and is set to conclude in June 2025. She concurrently complements her medical treatment with natural remedies, such as juicing, maintaining a paleo diet, and detoxification. Her treatments have led to significant cancer reduction.

Abby underlines the importance of regular health checks and awareness. She emphatically states that cancer can affect anyone, regardless of skin type or health history. She actively promotes this message through her Instagram account. Despite challenges like hair loss and digestive issues from treatment, Abby persists with a resilient mindset. Her experience has drastically altered her lifestyle, and she now prioritizes organic food and minimizing toxins, be they in diet or skincare. Her family’s presence and encouragement have been pivotal, though she acknowledges the emotional strain her condition placed on them.

Through her experience with stage 4 melanoma, Abby has embraced a new identity, combining her medical knowledge with personal insights to advocate for health prioritization. Above all, she encourages others to take preventive measures and remain positive. She emphasizes that health is a personal responsibility, and underscores the importance of mental wellbeing alongside physical health.

Name: Abigail E.
Diagnosis:
- Melanoma (Skin Cancer)
Staging:
- Stage 4
Symptoms:
- Small yet fast-growing, marble-like growth under right arm
- Intermittent headaches
Treatments:
- Radiation
- Immunotherapy

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, Abigail!

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“One Step at a Time”: How Two-Time Cancer Patient Jeff Deals with Non-Small Cell Lung Cancer

Post author By Chris Sanchez
Post date March 3, 2025
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March 3, 2025

“One Step at a Time”: How Two-Time Cancer Patient Jeff Deals with Non-Small Cell Lung Cancer

Jeff, a two-time cancer survivor, narrates his journey, highlighting his pivotal moments and personal insights. Having experienced his first cancer diagnosis in 2017 with an atypical spine cancer, at age 64, years later, he subsequently discovered that he had stage 4 non-small cell lung cancer.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

In 2017, Jeff faced his first cancer scare, resulting in complex surgeries due to a misdiagnosis. He credits the support of his family during this challenging period. Jeff views his cancer journey as transformative, learning extensively about medical procedures and advocacy, which additionally fueled his passion for cancer awareness and helping others facing cancer.

Jeff was diagnosed with stage 4 non-small cell lung cancer during a routine check-up for a mild but persistent cough. His experience emphatically underscores the importance of proactive health checks. Mistakes in earlier scans could have changed his prognosis, but Jeff remained resilient. He tested positive for the EGFR exon 19 deletion mutation, and afterwards began to have targeted oral chemotherapy treatments, which offered him hope beyond traditional chemotherapy.

Jeff emphasizes the value of second opinions and self-advocacy in medical care. Despite past misdiagnoses, he nevertheless acknowledges the role of healthcare advancements in extending his life. His experience with COVID-19, which led to the discovery of his lung cancer diagnosis, correspondingly instilled a belief in vaccines and preventative health measures.

Through his advocacy, Jeff aims to help others with their cancer experiences, stressing the importance of focusing on the present rather than fixating on overwhelming future possibilities. He furthermore encourages others to build hope, seek education, and maintain positivity, particularly highlighting personal connections and openness as sources of strength.

Jeff’s stage 4 non-small cell lung cancer story highlights the need for community, collaboration, and continuous learning in healthcare. His transformation into a dedicated cancer advocate additionally illustrates a profound identity shift, where compassion and human connection emerge as vital components of resilience and survival. Above all, through his narrative, Jeff inspires others to face their challenges with courage and also to focus on making a difference beyond personal struggles.

Name:
- Jeff S.
Age at Diagnosis:
- 64
Diagnosis:
- Non-Small Cell Lung Cancer (NSCLC)
Mutation:
- EGFR exon 19 deletion
Staging:
- Stage 4
Symptom:
- Slight cough
Treatments:
- Surgery
- Radiation
- Chemotherapy
- Targeted therapy

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, Jeff!

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Advocacy and Authenticity: Alessandra’s Experience with Stage 2 Bile Duct Cancer (Cholangiocarcinoma)

Post author By Chris Sanchez
Post date February 26, 2025
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February 26, 2025

Advocacy and Authenticity: Alessandra’s Experience with Stage 2 Bile Duct Cancer (Cholangiocarcinoma)

Alessandra’s story is a profound and emotional narrative, highlighting her life before and after being diagnosed with stage 2 bile duct cancer (cholangiocarcinoma) in 2020. Life took a dramatic turn when she started experiencing severe health issues, leading to panic attacks, abdominal pain, and weight loss. After multiple misdiagnoses and frustrations with healthcare professionals, Alessandra’s persistent advocacy for her health led to the discovery of a large tumor through an MRI.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Transitioning into the phase of treatment, Alessandra underwent a challenging surgical process, which she describes as being worse than the ensuing six months of chemotherapy. The experience was isolating due to COVID-19 restrictions, but it was a necessary step. Afterward, despite having to endure intense pain, Alessandra found solace in finally having a diagnosis, which alleviated her panic attacks. Her subsequent chemotherapy was taxing and caused severe neuropathy, but she correspondingly managed it with humor and support from loved ones. Her friend’s companionship during chemotherapy sessions became a source of strength and laughter.

Alessandra’s experience with stage 2 bile duct cancer (cholangiocarcinoma) has profoundly altered her perception of life and relationships. She faced the distress of hair loss, which impacted her identity and self-perception significantly. Her struggle with body dysmorphia and fatigue was ongoing, but it did not deter her from continuing her modeling career. Remarkably, she maintained her public persona and remained active in her art.

The diagnosis also had a ripple effect on her family, with her father being diagnosed with cancer shortly after her surgery. This shared experience within the family tested their resilience but conversely also strengthened their familial bonds. Through it all, Alessandra realized the importance of living without regrets and advocating for one’s well-being.

Reflecting on her stage 2 bile duct cancer experience, Alessandra encourages open discussions about death and planning, and underscores the importance of living a life true to oneself. Above all, her story serves as a testament to resilience, self-expression, and prioritizing personal happiness despite societal norms.

Name:
- Alessandra G.
Diagnosis:
- Cholangiocarcinoma (bile duct cancer)
Staging:
- Stage 2
Age at Diagnosis:
- 32
Symptoms:
- Abdominal pain
- Dizziness and vertigo
- Back pain
- Pain during digestion
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, Alessandra!

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Nicholas Has Terminal Grade 4 Brain Cancer —But He’s Not Giving Up Hope

Post author By Chris Sanchez
Post date February 26, 2025
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February 26, 2025

Nicholas Has Terminal Grade 4 Brain Cancer — But He’s Not Giving Up Hope

Nicholas, a carpenter and fitness enthusiast from Canada, was diagnosed with terminal grade 4 brain cancer (glioblastoma multiforme). He reveals his initial shock upon diagnosis, following a multitude of seizures that revealed a large tumor. Despite the grim prognosis, he afterwards underwent three craniotomies over 16 months, exceeding the initial prognosis of three to 12 months with treatment. Concurrently, he pursued chemotherapy and radiation as well as experimental treatments, albeit without expected success due to the nature of glioblastomas.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Nicholas additionally discusses his participation in clinical trials, including one in Calgary that involves personalized oncogenomics. This trial employed organoids to test drugs on his tumor, and aims to identify effective treatment. He concurrently details the logistical, financial, and systemic challenges he faced in gaining access to treatments.

In addition to medical treatments for his grade 4 brain cancer, Nicholas also maintains a rigorous fitness routine, alternates between carnivore and ketogenic diets, and practices Stoic philosophy to build and maintain mental resilience. He additionally finds support from a strong online community and also draws strength from his family. He shares a strong belief in hope and willpower as crucial survival tools.

Nicholas conveys a proactive approach, insisting on being his own advocate within the healthcare system. He furthermore recounts an incident where his frequent requests for additional tests, despite the initial refusal of his doctors, prevented a potentially fatal delay in surgery. His story consequently highlights the importance of questioning medical advice and pushing for necessary interventions.

Nicholas encourages others struggling with grade 4 brain cancer, as well as those in similar situations, to never give up. He stresses the importance of fighting and, moreover, of holding onto hope. Despite the challenges, Nicholas nevertheless remains optimistic and determined to continue his fight against cancer. His story demonstrates resilience and perseverance in the face of adversity.

Name:
- Nicholas W.
Age at Diagnosis:
- 29
Diagnosis:
- Brain cancer (glioblastoma multiforme)
Grade:
- Grade 4
Symptom:
- Clonic seizures
Treatments:
- Radiation
- Chemotherapy
- Surgery

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, Nicholas!

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Bladder Cancer Awareness: A Firefighter’s Story

Post author By Chris Sanchez
Post date February 18, 2025
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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

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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.
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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!

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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?

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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

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