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.
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.
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.
Symptoms: Severe pain on the side pain that worsened over time, pelvic pain and a feeling of pressure resembling labor, swollen lymph node on the cheek Treatments: Multiple surgeries to remove tumors, targeted therapy (Opdualag/nivolumab and relatlimab-rmbw) ...
“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.
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 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 faced by patients and survivors. This series intends 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.
