“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.
Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients 1st Symptoms: Shortness of breath, jabbing pain while talking, wheezing at night Treatment: Targeted therapy (alectinib), stereotactic body radiation therapy (SBRT)
Symptoms: Persistent cough (months), coughing up a little blood, high fever, night sweats Treatments: Chemotherapy (4 cycles), maintenance chemo (4 cycles)
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.
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.
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
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.
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.
Symptoms: Irregular occurrences of seeing streaks of blood in urine, specific type of pain when bladder is full, unexplained weight loss, urinary urgency, malaise, fatigue Treatments: Chemotherapy, surgery (TURBT: transurethral resection of bladder tumor)
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. ...
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.
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
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.
Shawn, 48, from Springfield, MI, discusses his ongoing battle with stage 4 colorectal cancer. He describes his unexpected cancer diagnosis after experiencing severe abdominal pain, which led to a CT scan that revealed a large blockage. Doctors diagnosed it as cancer and quickly performed surgery, removing a portion of his colon and addressing other cancerous tissues.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
After getting through his surgery, Shawn faces the emotional and physical challenges of his colorectal cancer. Nevertheless, he maintains hope in his eventual recovery, thanks to his age and metabolic health, as well as faith in his doctors’ treatment plan. He is on the verge of undergoing chemotherapy and plans to pursue additional treatments to eradicate the cancer. Shawn recounts the support of his wife, who has become an unwavering pillar in his fight against the disease, helping him through challenging moments.
Despite his diagnosis, Shawn still feels lucky, because the cancer has not claimed his life. He consequently expresses gratitude for having a type of cancer that offers some hope compared to others. He emphasizes the importance of staying positive and active in combatting his illness, and keeps busy with projects at home to counter the inactivity that comes with treatment.
Sharing his colorectal cancer story, Shawn highlights the significance of learning from others’ experiences and encourages communication to avoid isolation. He advises others facing similar challenges to seek support and information. By staying informed and connected with loved ones, one can cope better with the emotional strain of cancer.
Shawn remains optimistic, focusing on moments with his family and confronting his journey with a pragmatic approach, allowing him to face each step with resolve and purpose.
Name:
Shawn K.
Diagnosis:
Colorectal cancer
Age at Diagnosis:
47
Staging:
Stage 4
Initial Symptoms:
Appearance of a large, painful mass in his colon
Treatment:
Surgery
Chemotherapy (planned)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
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.
Laurie’s Stage 4 Follicular Non-Hodgkin Lymphoma Story
Laurie, a Los Angeles resident, was diagnosed with stage 4 follicular non-Hodgkin lymphoma in 2006, when she was 46. Her journey to diagnosis began years earlier with vague symptoms—frequent sinus infections, a tendency for her right eye to dry out, fatigue, and a lump in her abdomen. Multiple doctors dismissed her concerns, with one attributing the lump to a hernia. But a diagnostician ordered a CT scan, and it revealed a grapefruit-sized tumor and spots on her lungs.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
After undergoing a series of tests, including biopsies, Laurie learned she had follicular non-Hodgkin lymphoma, a type of cancer affecting the lymphatic system. Her initial response to the cancer diagnosis was shock, followed by depression and uncertainty about how to explain the situation to her young son and husband.
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
Symptoms:
Frequent sinus infections
Dry right eye
Fatigue
Lump in abdomen
Treatments:
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.
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
Hip-Hop, Hope, and Health: Oya Gilbert’s Multiple Myeloma Story
Oya Gilbert shares his powerful journey battling multiple myeloma, which began in 2015. Given his high energy and healthy past, Oya knew something was wrong when he began experiencing serious symptoms such as severe fatigue, bone and back pain, and episodes of passing out.
Living in a rural area, he faced challenges getting a proper diagnosis, as local medical professionals failed to identify his condition accurately. Initially, doctors misdiagnosed his symptoms as anxiety, leading to ineffective treatments. Eventually, in 2017, doctors diagnosed him with stage 1 multiple myeloma, a revelation that was both a relief and a new challenge.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
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.
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.
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.
Dr. Brandon Blue knew at a young age that he wanted to help people. Decades later, he’s done that and so much more, changing and saving the lives of people who’ve been diagnosed with cancer. Dr. Blue shares key strategies for better health care and saving lives, especially in Black communities impacted by multiple myeloma.
