The Importance of Knowing My ROS1 Mutation: Ashley’s Non-Small Cell Lung Cancer Story
At 38, Ashley was living a healthy, active life, balancing work and motherhood with her two young children. The last thing she expected was a diagnosis of stage 1 ROS+ non-small cell lung cancer in September 2024. Her story is one of self-advocacy, resilience, and the emotional complexities accompanying such life-altering news.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Ashley’s experience was kicked off by the unexpected discovery of a lump on her chest wall in July 2024. Though her primary care doctor and OB-GYN diagnosed it as a lipoma or a benign fatty lump, Ashley trusted her instincts and pushed for further evaluations. A series of tests, including an ultrasound and eventually a CT scan, revealed something more concerning: a lung nodule.
For a brief, terrifying moment, Ashley thought she might have metastatic sarcoma. The emotional whiplash was overwhelming. Relief came when the chest wall mass did turn out benign, but the lung nodule biopsy confirmed stage 1 ROS1 non-small cell lung cancer. She was blindsided. As a nonsmoker with a healthy lifestyle, lung cancer wasn’t even on her radar. The shock was compounded by the fear of what this meant for her young children.
Ashley’s story underscores the importance of self-advocacy in healthcare. Unsatisfied with initial recommendations, she sought second opinions, pushing for genetic testing, which is not standard for early-stage lung cancer patients. This persistence paid off when she discovered she had a ROS1 gene mutation, information critical for her future health monitoring. She also connected with a ROS1 specialist, arming herself with knowledge for proactive care.
Ashley underwent a lobectomy to remove the cancerous part of her lung. Recovery wasn’t easy. She candidly shares the physical pain, the mental toll, and the challenges of balancing healing with motherhood and work. The surgery left her with 30% less lung capacity, which surprisingly didn’t limit her daily activities as much as she feared.
The hardest part of her stage 1 ROS+ non-small cell lung cancer experience? Not the physical recovery, but the effects on her mental health. Ashley grappled with medical PTSD, anxiety, and survivor’s guilt, especially when she became immersed in the lung cancer community and saw others with more advanced stages. She wrestled with her emotions, thinking, “Why me?” as a healthy nonsmoker, and “Why did I get lucky to catch it early when others didn’t?”
Ashley wants others to understand that there’s no need to find a silver lining in cancer. It’s okay to feel sad, fearful, and resentful. She emphasizes the value of simply having people listen without trying to “fix” their emotions.
Watch Ashley’s video and take a deep dive into her stage 1 ROS+ non-small cell lung cancer story:
“I never thought I’d get lung cancer at 38 — especially as a nonsmoker.”
How a benign lump led to Ashley’s life-saving lung cancer diagnosis.
“The hardest part wasn’t the surgery; it was the mental toll afterward.”
Survivor’s guilt: why catching cancer early isn’t always a relief.
The key piece of advice Ashley offers to anyone facing a tough diagnosis.
Name:
Ashley H.
Age at Diagnosis:
38
Diagnosis:
Non-Small Cell Lung Cancer
Mutation:
ROS1
Staging:
Stage 1
Symptom:
No lung cancer-specific symptoms; sudden appearance of lump on chest wall
Treatment:
Surgery: lobectomy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
The Email That Saved My Life: Darla’s Stage 2B Pancreatic Cancer Story
Darla was diagnosed with stage 2 pancreatic cancer (2B) in 2024, a revelation that turned her world upside down. It all began with persistent back pains in 2023, attributed to aging and work-related stress. When stomach discomfort showed up in early 2024, it was chalked up to indigestion. Despite these nagging issues, Darla had no idea her body was hinting at something far more serious.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Surprisingly, a life insurance email offering a free cancer screening became Darla’s unexpected lifeline. Initially skeptical, she eventually took the painless step of a simple blood test. Months later, while enjoying a vacation in Missouri, she received the shocking results: indicators of potential pancreatic or gallbladder cancer. Darla’s instinct led her to push for more tests. They found elevated levels of the fat-digesting enzyme lipase, which can indicate a pancreatic disorder. An MRI confirmed a small tumor in the neck of her pancreas.
Darla’s stage 2B pancreatic cancer diagnosis was a jarring reality check. Initially, all she could think of was death. However, fear transformed into determination. She immersed herself in research, joined support groups, and sought solace in her faith.
Darla underwent several rounds of chemotherapy, which came with intense side effects, from neuropathy to extreme fatigue. When chemo didn’t shrink the tumor, Darla opted for radical antegrade modular pancreatosplenectomy (RAMPS) surgery. The procedure removed the tumor, part of her pancreas, her spleen, gallbladder, and 31 lymph nodes, with only one lymph node showing cancer cells.
Darla’s recovery from stage 2 pancreatic cancer (2B) was tough. Post-surgery, she faced an infection and a bowel obstruction that landed her back in the hospital. But she’s resilient, motivated, and committed to moving forward, despite the mental toll of living in perpetual uncertainty. Her biggest challenge? Planning for the future. She likens it to being stuck in an airport, unable to board the next flight.
What keeps Darla grounded is her faith, which has given her strength when nothing else could. Her experience has fueled her advocacy for proactive health measures. She emphasizes the importance of self-advocacy, mental health, and the need for routine cancer screenings, even without a family history. She urges others not to be complacent. Early detection saved her life, and she believes it can save others, too.
Watch Darla’s video and learn more about:
How a free cancer screening email changed her life
The power of trusting your instincts
Navigating life with stage 2B pancreatic cancer
Why early cancer screenings should be part of routine check-ups
The unseen side of recovery: Darla’s raw account post-cancer treatment
Name:
Darla L.
Age at Diagnosis:
62
Diagnosis:
Pancreatic Cancer (Adenocarcinoma of the Pancreas)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptom: None; found the cancers during CAT scans for internal bleeding due to ulcers Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled)
“Positivity Breeds Acceptance”: Jess’s Crohn’s Disease (IBD) Story
Jess was diagnosed with Crohn’s disease, a kind of inflammatory bowel disease, when she was just eight years old. She began experiencing unexplained stomach pains and a noticeable loss of appetite, even when offered desserts that she loved. A sudden weight loss signaled to her family that something was seriously wrong. After a series of tests, especially with a family history of Crohn’s, the diagnosis was confirmed. Now, 22 years after receiving an ostomy bag, watch Jess’s story.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Initially, Jess managed her condition with standard medications and a highly specific diet — her mom even peeled strawberries to make them safe to eat. Life seemed relatively stable until an unrelated bout of stomach flu sent her health into a downward spiral. Her body couldn’t keep up despite steroids, biologics, and even total parenteral nutrition, a process of delivering nutrients intravenously, skipping the digestive system. Eventually, Jess developed toxic megacolon, a life-threatening complication from her Crohn’s disease that left no option but emergency surgery to remove her colon and part of her small intestine.
Facing ostomy surgery as a teenager was daunting. But Jess vividly recalls the moment her surgeon’s wife, who also had an ostomy, visited her in the hospital. Dressed in stylish black jeans, she challenged Jess to find the ostomy bag, and Jess couldn’t. This encounter shattered the stigma Jess had unknowingly built up, showing her that life with an ostomy could still be full and vibrant.
Recovery wasn’t easy. Jess had to relearn basic functions, from swallowing food to walking. She also navigated the complexities of ostomy care, experimenting with different products to find the perfect fit. Adjusting to a new body image during her teenage years, especially with 2000s fashion trends like low-rise jeans, added another layer of challenge.
But Jess was resilient. By the time she graduated from high school, she had found her confidence, made meaningful friendships, and even taken bold steps in Crohn’s disease advocacy. Her senior PR project on ostomy awareness laid the groundwork for Uncover Ostomy, a campaign that continues to educate and support countless individuals today.
Jess wants everyone to know that positivity breeds acceptance. She believes that approaching life and her ostomy with confidence has not only empowered her but also influenced how others perceive it. Her courage to share her authentic experience has made her a beacon of hope for many facing similar health challenges.
Watch Jess’s video and delve into:
How she found her confidence after life-altering surgery
The unexpected moment that changed Jess’s view on her ostomy
From hospital bed to advocacy: her inspiring Crohn’s disease story
How Jess relearned to eat, walk, and live fully after surgery
The real challenges and triumphs of living with Crohn’s disease
Name:
Jess G.
Age at Diagnosis:
8
Diagnosis:
Crohn’s Disease (a type of inflammatory bowel disease or IBD)
Symptoms:
No appetite even when offered a favorite dessert
Weight loss
Treatments:
Steroids
Blood transfusions
Biologics
Surgeries: colectomy, small bowel resection, colostomy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptoms: Irritable bowel syndrome (IBS), gastroesophageal reflux disease (GERD), constipation, red eyes (allergic conjunctivitis), joint pain, weight loss, frequent bowel movements with bleeding Treatments: Surgeries (total proctocolectomy, permanent ileostomy, J-pouch which was later reversed due to complications, nearly two dozen additional surgeries related to Crohn’s complications)
Kelly was diagnosed with stage 4 colon cancer. She reflects on the subtle signs she overlooked — persistent constipation, bloating, and occasional severe abdominal cramps. Like many, she chalked these symptoms up to diet choices and life stress. However, her worsening condition after a recent move pushed her to visit the emergency room. There, a CT scan revealed her diagnosis, and it changed everything.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
When she heard the words, “colon cancer”, Kelly felt like the room collapsed around her. Alone in a new state, miles from family, she faced the overwhelming news head-on. Despite her initial denial, especially about undergoing major surgery and having a temporary colostomy bag, the stark reality was clear: accept the treatment or face life-threatening consequences. That pivotal moment shifted her mindset, igniting a determination to do what was necessary to survive.
Initially diagnosed as stage 2, Kelly had the option to undergo chemotherapy but chose not to, feeling hopeful after her surgery. Unfortunately, a year later, she discovered the cancer had metastasized to her liver, upgrading her diagnosis to stage 4 colon cancer. This news devastated her. Yet, amid the emotional whirlwind, she found out she was eligible for surgery to remove the liver tumors, offering a glimmer of hope.
Kelly’s health journey wasn’t just about cancer. Post-surgery, she battled a severe liver infection that left her physically depleted. Surprisingly, that infection felt more life-threatening than cancer itself. Through relentless fevers, night sweats, and unyielding fatigue, Kelly persevered, leaning on sheer willpower and the support of her loved ones.
Reflecting on her experience, Kelly emphasizes the importance of self-advocacy. She wishes she’d pushed harder when symptoms emerged much earlier, like rectal bleeding, once dismissed by her doctor as a minor issue due to her age. She urges fellow patients to trust their instincts, ask questions, and advocate fiercely for their health.
Today, despite the lingering fears that scans and blood tests bring, Kelly embraces life with renewed passion. She cherishes every moment with her children, finds solace in nature, and seeks out new experiences with an invigorated spirit. While there’s a shadow of uncertainty, she remains hopeful and encourages others not to give up. Kelly’s story is a powerful reminder that even in the face of stage 4 colon cancer, life can still be filled with beauty, growth, and purpose.
Watch Kelly’s video for more on:
How a routine ER visit unveiled her unexpected stage 4 colon cancer diagnosis.
The overlooked symptoms that Kelly wishes she’d paid more attention to.
What’s harder — battling cancer or an unexpected post-surgery infection? She shares her truth.
The emotional toll of living with cancer and why self-advocacy matters.
How Kelly’s love for nature became her therapy amid life’s toughest health battles.
Name:
Kelly C.
Age at Diagnosis:
47
Diagnosis:
Colon Cancer
Staging:
Stage 4
Symptoms:
Constipation
Bloating
Severe abdominal pain
Treatments:
Surgeries: colectomy, colostomy, hepatectomy
Chemotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptoms: Chronic digestive issues, bloating, abdominal pain, unpredictable bowel habits, unexplained weight gain, nausea, fever Treatments: Surgeries (removal of the tumor, right ovary, right fallopian tube, and part of the small intestine), chemotherapy
How Biomarkers and the NanoKnife Offered Elise New Hope in Her Pancreatic Cancer Treatment
When Elise was diagnosed with stage 4 pancreatic cancer in 2012, she never expected to be utilizing emerging pancreatic cancer treatments. Through biomarker testing and a newer procedure called the NanoKnife, Elise found options—and hope. 13 years later, she describes the experience as “a gift in a strange package,” which shows how she found purpose through pain and resilience despite the hardship.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Elise’s symptoms began with persistent pain, indigestion, and unintentional weight loss. After countless doctor visits, a CT scan with contrast revealed a large tumor near her pancreas, confirming the diagnosis of stage 4 pancreatic cancer. Her relentless push for answers underscores the importance of self-advocacy in healthcare.
Elise’s experience also highlights the significant role of genetic and molecular testing, commonly called biomarker testing. She was found to be BRCA2-positive (this is a genetic mutation linked to increased cancer risk). This revelation not only clarified her diagnosis but also opened doors to targeted treatments. She received chemotherapy, radiation, and an innovative procedure called irreversible electroporation, which helped eliminate her tumor.
Through it all, Elise’s positive attitude became her anchor. Her doctor’s encouraging words and approach provided her with the mental strength to face each day. This highlights how crucial a doctor’s words can be in shaping a patient’s mindset. Elise’s faith, family support, and the unwavering belief in hope played key roles in her recovery.
Elise’s stage 4 pancreatic cancer story emphasizes the need for advocacy, the importance of biomarker testing, and the power of optimism. She passionately advises others diagnosed with pancreatic cancer to seek second opinions, advocate for themselves, and never give up hope. As she beautifully puts it, “Hope trumps fear.”
Watch Elise’s video and find out more about:
How numerous doctor visits turned into a miracle in her fight against stage 4 pancreatic cancer.
The simple words from a doctor that transformed Elise’s outlook.
Why biomarker testing can be life-changing for cancer patients.
How her positive attitude and faith fueled her recovery.
The innovative procedure that helped save Elise’s life.
Name:
Elise T.
Age at Diagnosis:
43
Diagnosis:
Pancreatic Cancer
Staging:
Stage 4
Symptoms:
Severe and persistent back and stomach pain
Weight loss
Indigestion
Treatments:
Chemotherapy
Surgery: irreversible electroporation
Radiation therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptom: None; found the cancers during CAT scans for internal bleeding due to ulcers Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled)
How Stage 4 Synovial Sarcoma Redefined Julie’s Life
Julie’s life took an unexpected turn in 2014 when she was found to have stage 4 synovial sarcoma, a rare kind of soft tissue cancer often starting in joints and tendons but can also be found in the chest. After a car accident in October 2013, she started to experience persistent chest and back pain. Despite clear initial scans, her discomfort grew. One night, the sensation of a heavy weight on her chest after a run earlier that day prompted an ER visit, leading to a life-changing discovery: a mass in her chest.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Naivety shielded Julie from fear at first. Cancer wasn’t on her radar; she thought medicine could fix it. But the words “stage 4 synovial sarcoma” shattered that illusion. The diagnosis process was long, filled with inconclusive biopsies and overwhelming medical jargon. Eventually, she received clarity: an aggressive, rare cancer.
Julie’s treatment began with intensive chemotherapy, which she describes as the hardest experience of her life. The side effects of this treatment were brutal: relentless fatigue, inability to eat, and emotional isolation. She recalls moments of despair, including from the sheer exhaustion of enduring such pain. Yet, voicing that pain became a release, helping her confront her feelings.
After chemo, surgery loomed. Julie’s tumor, once watermelon-sized, had shrunk but was still substantial. Surgeons removed part of her left lung, the phrenic nerve (a nerve that helps control your breathing by moving the diaphragm), and ribs. Recovery tested her patience; frustration brewed as healing felt slow. Breathing with a paralyzed diaphragm and learning to walk again was daunting, underscoring her evolving identity beyond physical abilities.
Radiation followed, surprisingly bringing lightness. Julie experienced hair loss, and as her hair grew back, so did fragments of her self-image. She found humor even in vulnerability — lying on a table, being tattooed for radiation alignment, while techs chatted about raves.
Life post-treatment for stage 4 synovial sarcoma wasn’t linear. Recurrences came, each time shaking but not breaking her. Julie underwent additional surgeries and CyberKnife radiosurgery. Over the years, regular scans became part of her rhythm, now spaced every six months.
Through it all, the message Julie’s eager to share is simple yet profound: find something to laugh about each day. Laughter, she believes, breathes life into moments shadowed by illness. It’s not just a coping mechanism; it’s a testament to resilience. Connection with others who “get it” has been invaluable, offering both understanding and shared humor.
Watch Julie’s video to learn more regarding:
How a car accident unveiled her hidden disease.
The unexpected power of laughter in Julie’s cancer experience.
Why Julie’s toughest battle wasn’t with treatment but with self-identity.
How humor and vulnerability helped her reclaim her life.
From despair to hope: Julie’s authentic take on life after a stage 4 synovial sarcoma diagnosis.
Name:
Julie K.
Age at Diagnosis:
23
Diagnosis:
Synovial Sarcoma
Staging:
Stage 4
Type:
High-Grade, Poorly Differentiated, Spindle Cell
Symptoms:
Chest and back pain after car accident
Trouble breathing
Treatments:
Chemotherapy
Surgeries: lung resection, video-assisted thoracoscopic surgery (VATS), neurectomy, rib removal
Radiation therapy: CyberKnife
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptoms: Pain behind left knee, needle-like sensation in left foot Treatments: Surgery to remove what was thought to be benign tumor, chemotherapy, final surgery, radiation (36 sessions) ...
Bladder Cancer Changed Me — But It Didn’t Break Me: Danny’s Story
Danny dealt with non-muscle invasive bladder cancer head-on in 2023, a diagnosis that shook his world but also transformed his outlook. As he approached 50, he anticipated typical signs of aging — but was unprepared for the persistent back pain and relentless vomiting that led him to the ER. A CT scan revealed something suspicious, prompting a referral to a urologist who confirmed Danny’s worst fears: it was bladder cancer.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Navigating this life-altering news, Danny grappled with deep emotional turmoil, recalling the swift loss of his father to colon cancer. The shadow of that grief made his diagnosis even heavier. But Danny didn’t submit to his fear. He instead channelled his energy into self-advocacy, becoming his own most vocal health champion. His wife’s unwavering support was pivotal. She signed him up for the Walk to End Bladder Cancer, which reignited his spirit and helped him connect to a community that understood his struggle.
Undergoing transurethral resection of bladder tumor (TURBT) surgery, chemotherapy, and immunotherapy, Danny learned the critical importance of proactive health management and open dialogue about topics often shrouded in stigma, like bladder health and erectile dysfunction. His candidness regarding bladder cancer breaks barriers, encouraging others to seek support and speak openly.
Today, Danny’s focus is on preserving his health, nurturing resilience, and empowering others through his story. He wants others to know that self-advocacy, support, and staying informed are powerful tools in reclaiming health and happiness.
Watch Danny’s video and read the story for more about:
How his ER visit revealed more than he expected.
The pivotal moment that reignited Danny’s will to live.
What he wishes he knew before his bladder cancer diagnosis.
The role of self-advocacy in Danny’s recovery journey.
Breaking the stigma: his open talk about bladder cancer.
Name:
Danny G.
Age at Diagnosis:
48
Diagnosis:
Non-Muscle Invasive Bladder Cancer
Symptoms:
Fatigue
Back pain
Erectile dysfunction
Nausea
Treatments:
Surgery: transurethral resection of bladder tumor (TURBT)
Chemotherapy
Immunotherapy
Thank you to Johnson & Johnson for supporting our patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
My message of hope to people who experience bladder cancer or other similar conditions is to keep your feet on the ground. Find a direction to head. Grab on to that care partner.
About Me
Hi, I’m Danny. I’m 49 years old.
I survived non-muscle invasive bladder cancer in 2023.
The Run-Up to My Bladder Cancer Diagnosis
Approaching age 50, I was ready for things like an enlarged prostate, trouble urinating, and back pain. All of these things add up to what you hear about closing in on that age.
One of the biggest changes that I started experiencing was erectile dysfunction. I didn’t know this until afterwards, but with a diagnosis such as bladder cancer, eventually, you realize that it affects everything down there. And it’s not just sexual problems. I had no idea that bladder pain could affect the back and the hips.
I used to be an alcoholic, and I was really out of shape, too. I used to weigh over 300 pounds. Earlier in 2023, I had quit drinking, and I started to get into shape. But when my figure had improved and I started losing weight, that’s when things started to happen.
Occasionally, I’d have a really upset stomach in the morning. But things got worse. In July 2023, I started vomiting and kept on vomiting for 12 hours. It took me a while, but I finally managed to drag myself to the ER.
The attending physician said, “I’d like to give you a CT scan to make sure you haven’t ruptured anything.” It didn’t find any internal bleeding. But when the report came back from that CT scan, after I’d already gotten out of the hospital, they told me I needed to go to a urologist.
Then things turned into a bit of a fever pitch, and I started worrying that I had cancer. I went to my urologist. He was pretty pragmatic and straightforward. He said, “I’m almost 100% sure you do have cancer. We have to do a scope, a cystoscopy, to make 100% sure it is cancer, and then we’re going to take it out.”
I remember another part of that visit very distinctly. Before seeing the doctor, I was in the waiting area. I was with a gentleman who might also have been in a similar situation. He had unfortunately missed his appointment. They told him that he was going to have to wait a month for the next slot.
This still just chokes me up, because when I was sitting there and didn’t know if I had cancer yet, I remember considering giving this guy my appointment. I decided against it, but it would have been a pivotal decision.
Trying to overcome the information gap and deal with crucial information revealing itself became important to me. I thought, I’m scared to death, but here we go. I was just on a hunt from then on out. Just information gathering.
I went to my urologist… He said, “I’m almost 100% sure you do have cancer. We have to do a scope, a cystoscopy, to make sure it is cancer, and then we’re going to take it out.”
My Biopsy and Waiting for the Results
I went in for my procedures. At the time, I had no idea what a cystoscopy was, but I’ve already undergone ten of them now.
Afterwards, I was waiting for the results of the biopsy. I took the time to thoroughly read the notes from the doctor. One thing I read made me go and see him. The doctor had put this in his notes: “Pleural nodule found during CT scan in left lung.” He’d even added, “Highly concerning.” I asked him, “Am I going to live or die?”
You see, my father died of stage 4 colon cancer in 2020. He died only a month and a half after his diagnosis, because he just let go. I was his caregiver. And, I thought, “Now I’m the patient.”
I’d watched my father die, and I buried him. When I found out I was very likely to have cancer, I was convinced I was going to die, too. So I started giving away my stuff and telling my wife to be prepared.
Every time someone brings those topics up, it just hits me right in the stomach. I’m still so emotional about it, even after all this time.
My Diagnosis, How I Took It, and How My Wife Helped Me
They finally told me that I had non-muscle invasive bladder cancer. I had a grape-sized tumor, one over my ureter from my left kidney. Luckily, later, I found out that the tumor was confined to the bladder and not the ureter.
My diagnosis hit me hard. I felt completely sucked of all energy. I felt lost and confused. I sank into depression and anxiety, and didn’t even realize it.
I spent the next six months in bed, pretty much just waiting to die.
But my wife pulled me out of it. She came into my room one day and said, “I’ve signed you up for the Walk to End Bladder Cancer in Columbus.”
That was the moment things started to change for the better. It was as if I had stepped on the edge of a pit, and I had started to dig myself out. I had been so sick the whole time during my surgery, and I felt like I had put a foot out on the path to recovery.
I ended up going to Columbus and participating in that walk. And I also started to bring that community in.
I appreciate my wife and how she cares for me. But there’s more. To this day, she’s my inspiration. She runs marathons now — when I look at her, it gives me the strength to move on.
My diagnosis hit me hard. I felt completely sucked of all energy. I felt lost and confused. I sank into depression and anxiety, and didn’t even realize it.
My Treatment Plan
When the pathology came back, I underwent TURBT. The surgeon removed the tumor using instruments and a thin tube or scope that entered my body through my urethra.
I had to have a stent placed from my kidney to my bladder because it was over the ureter, and the hole would close up. I had that stent in for a solid eight weeks before it was removed.
That removal was my second procedure, during which they put me under and pulled out the stent. I woke up for the second time with a bladder full of chemotherapy.
My nurse would administer six induction doses into my bladder via a catheter. I would then head home, lie down, and lie on each side for about an hour and 15 minutes each, to make sure that my bladder was coated with the medicine.
Part and parcel of the process was having to deal with my emotions. I would be going through my life like I didn’t have cancer, and then I would get anxious and depressed a week before each induction dose. I would be thinking, “Oh my God, I’ll be getting a catheter again next week.” Then I would get sick. It was quite daunting.
Preserving My Bladder
My bladder is definitely the most important thing in this equation. And so I need to keep it healthy. Although it didn’t occur to me right away, I was still able to find this out early enough.
There was no talk of having my bladder removed. I’ve said that my doctor was pragmatic. That’s a good thing, I’ve found. He won’t say anything unless it’s absolutely necessary, and he hasn’t brought bladder removal up at all.
I know the disease hasn’t progressed enough to become muscle invasive that quickly, because we’ve checked it so often. Additionally, extracting the bladder can bring about issues all of its own.
My bladder is definitely the most important thing in this equation.
And so I need to keep it healthy.
I’m Breaking the Stigma Around Bladder Cancer
People are naturally modest when it comes to talking about the bladder and, let’s just say, the areas around it. But we do need to talk about these things. People need to be informed.
I’m open about my experience because I want to help others. For instance, I’m frank about erectile dysfunction. It’s a natural human male thing that we have to deal with in different ways.
I thankfully no longer experience sexual dysfunction. Of course, it’s very worrisome for a man. My father went through it, and he openly admitted to me that it was quite difficult for him.
My health was a concern when it came to that issue, too. I know that it was due to the bladder cancer itself, but it was also a function of comorbidity, age.
It’s thanks to medicine, self-advocacy, proactive learning, and education that I can specifically tell you where I don’t have problems any longer.
Self-Advocacy Really Matters
Now, self-advocacy is essential. If I could give anyone just one piece of advice, it would be — don’t give up, take that first step, and make yourself vulnerable to everything that’s going to happen to you.
You need those partners and those people who will advocate for you — your friends and family. But that said, the buck stops with you. You’re going to be scared to death, but you’re on your own for a minute. You’re going to have to dig and do your own research, your own advocacy.
My situation was a stark reminder to me that life has no guarantees. I was going to be on my own. And in the two years since my diagnosis, it remains true.
It’s such a funny paradox. I have so many people in my network who are both willing and able to help me. But I sometimes feel apart from that group. So my self-advocacy kicks in, and it gives me strength.
If I could give anyone some advice, it would be — don’t give up, take that first step, and make yourself vulnerable to everything that’s going to happen to you.
What I Want People to Know
My message of hope to people who experience bladder cancer or other similar conditions is to keep your feet on the ground. Find a direction to head. Grab on to that care partner.
You’re going to have to go forward. You’re going to need to be strong. You’ll have to pick up things along the way. I tell you, by the time you reach the two-year mark, your life is going to change.
I’m living proof of that. My entire life has changed.
If you spoke to anybody who knew me before I got bladder cancer and who knows me now, they’ll agree. I’m a completely different person, both physically and mentally. I’ve got a different personality now.
I love people and can’t wait to get up in the morning. I can’t wait to help the people who need help.
I try to help at least one person per day if I can. That’s my rule.
Special thanks again to Johnson & Johnson for supporting our patient education program. The Patient Story retains full editorial control over all content.
Learn about the diagnosis and treatment process from bladder cancer survivors and medical experts. Discover diagnosis and treatment options./p>
Women with bladder cancer often face delayed diagnoses due to overlooked symptoms. This story highlights the importance of awareness, early intervention, and treatment options tailored to female bladder cancer patients.
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.
Kidney Cancer Caregiver Lindsay Balances Family, Fear, and Hope
When Lindsay’s husband Zeff was diagnosed with stage 4 kidney cancer (renal cell carcinoma), her world turned upside down. One moment, she was a wife and mom; the next, she became a full-time kidney cancer caregiver, navigating hospital corridors, medical jargon, and emotional storms.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
It all began with subtle signs: forgetfulness during a family trip to Europe and unexplained episodes of heart palpitations. They were initially dismissed as being due to stress from Zeff’s demanding job. But his symptoms escalated. A visit to the ER for heart issues unexpectedly revealed a mass on his kidney and lungs. Later, an MRI confirmed that it had spread to his brain. The news hit like a tidal wave of disbelief and fear.
Lindsay vividly recalls the surreal moment when the doctor confirmed the diagnosis. The sterile hospital room, her stoic husband trying to process the information, and her own heart shattering silently in the background. As a kidney cancer caregiver, she had to stay strong, not just for her husband, but for their three children.
Transitioning from spouse to caregiver was hardly something Lindsay planned for, yet she embraced it with unwavering determination. The days that followed were a blur of hospital stays, a craniotomy, and managing medications. Returning home felt both comforting and terrifying — it was like bringing a baby home, except this time it was her life partner.
The hardest part? Watching the person she loves in pain, while knowing she can’t fix it. Lindsay, a natural problem-solver, found herself battling feelings of helplessness. But amidst the chaos, she discovered an inner strength she never knew existed. She coordinated appointments, managed medications, cared for their kids, and kept their household running — all while grappling with her fears and grief.
Lindsay’s and Zeff’s search for the right oncologist was pivotal. While the first doctor painted a grim picture, the second offered hope, treating the cancer as a chronic condition rather than a death sentence. This shift in perspective was life-changing. Zeff responded well to treatments like immunotherapy and targeted chemotherapy, gradually regaining his strength. Today, he’s back at work, working out regularly, and living a life Lindsay feared might be lost.
For Lindsay, being a kidney cancer caregiver was more than just tending to physical needs. It meant navigating emotional landscapes, advocating for her husband, and finding moments of joy amid uncertainty. She urges other caregivers to take life one day at a time. Don’t dwell on the future or the past — instead, focus on the present, find small blessings, and cherish every moment.
Watch Lindsay’s video and find out more about:
How a simple heart check-up unveiled a life-changing diagnosis.
The emotional rollercoaster of transforming from a spouse to a kidney cancer caregiver.
Why finding the right oncologist can be a beacon of hope.
The raw truth about managing family life while caregiving.
Lindsay’s heartfelt advice: living one day at a time with grace and strength.
Name:
Zeff H.
Age at Diagnosis:
52
Diagnosis:
Kidney Cancer (Clear Cell Renal Carcinoma)
Staging:
Stage 4
Symptoms:
Forgetfulness
Inability to concentrate
Heart palpitations
Swollen eyes
Treatments:
Surgery: resection of brain tumor
Chemotherapy
Immunotherapy
Radiation therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
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Pushing to be Heard: Lindsay’s Experience with Thyroid Cancer (Papillary Thyroid Carcinoma)
Lindsay shares her story of being diagnosed and treated for thyroid cancer. When she turned 27, life was filled with exciting milestones — celebrations with friends, a recent work promotion, and the thrill of living in New York City. But things took an unexpected turn when she fainted on the subway one summer day. What seemed like a one-off incident snowballed into a series of debilitating symptoms: extreme fatigue, cognitive difficulties, muscle pain, and lightheadedness.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Lindsay visited her primary care doctor, specialists, and even holistic practitioners numerous times, but they thought she was experiencing anxiety, dehydration, or even an eating disorder. This, in addition to the physical toll of her condition, made her journey incredibly challenging. Unbeknownst to her and her doctors at the time, these symptoms were early signals of an underlying condition that would eventually lead to the discovery of thyroid cancer (papillary thyroid carcinoma).
Through it all, Lindsay became her strongest advocate. She pushed for more tests, sought second (and third) opinions, and refused to accept dismissive answers. Eventually, a holistic doctor’s test revealed an elevated C4 level (C4 is a blood protein that helps protect the body from viruses and bacteria) — an indicator that something serious was going on. This validation was a turning point, not just medically but emotionally, as someone finally acknowledged her experience.
Further investigations led to a diagnosis of postural orthostatic tachycardia syndrome (POTS), providing some clarity. But the real revelation came unexpectedly during a routine ultrasound needed for POTS-related cardiac assessments. A nurse suggested checking Lindsay’s neck arteries, which led to the discovery of thyroid nodules. Doctors initially thought they were benign, but a follow-up appointment expedited by sheer persistence revealed the truth: thyroid cancer.
The diagnosis of thyroid cancer was both shocking and oddly validating, as Lindsay finally had a name for her condition. She underwent surgery to remove part of her thyroid, and fortunately, the cancer had not spread beyond nearby lymph nodes.
Today, Lindsay openly shares her story to empower others. She emphasizes the importance of self-advocacy, the value of support systems, and never ignoring your intuition. Her experience highlights the critical role of persistence in healthcare. Lindsay’s journey is a testament to how relentless advocacy can lead to life-saving diagnoses, including conditions as serious as thyroid cancer.
Watch Lindsay’s story and find out more about:
How one fainting episode led to a life-changing thyroid cancer diagnosis.
After being told it was “all in her head,” Lindsay found the truth.
The power of self-advocacy — Lindsay’s inspiring health story.
The nurse’s simple question that uncovered hidden thyroid cancer.
Why and how her persistence saved Lindsay’s life.
Name:
Lindsay C.
Age at Diagnosis:
27
Diagnosis:
Thyroid Cancer (Papillary Thyroid Carcinoma)
Symptoms:
Lightheadedness to the point of fainting
Low blood pressure
Loss of menstrual period
Weight loss
Brain fog
Joint pain (old injuries and surgeries hurting)
Soreness and stiffness of legs
Depression
Severe anxiety
Trouble concentrating
Sweaty palms
Dry eyes
Sensitivity to light and sound
Tingling in hands and feet
Hair loss
Weak nails
Tiny bumps on legs
Digestive issues (soft stool and diarrhea)
Rapid heartbeat
Fatigue despite sleeping for long hours
Insomnia
Nightmares/night terrors
Temperature dysregulation/burning sensations (burning hands but feet and ears ice-cold)
Treatment:
Surgery: thyroidectomy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Redefining Strength: How Ciarra Faces Dermatofibrosarcoma Protuberans (Rare Skin Cancer)
Ciarra candidly shares her experience with dermatofibrosarcoma protuberans, a rare skin cancer she was diagnosed with in December 2024. Working in mental health, Ciarra’s passion for advocacy shines through as she opens up about her diagnosis, the challenges she faced, and the importance of trusting your instincts.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
It all started in late 2023 when Ciarra noticed a pea-sized lump on her left clavicle — painless and nestled under the skin. Despite initial tests showing nothing alarming, her gut told her something wasn’t right. Persistent night sweats, frequent fevers, and a feeling that her body was “off” pushed her to advocate for herself, even when medical professionals said it wasn’t concerning. After several tests and a biopsy, she received the unexpected diagnosis of this rare skin cancer.
The news overwhelmed Ciarra. But her determination never wavered. She navigated her treatment for dermatofibrosarcoma protuberans, which primarily involved surgery to achieve clear margins, without hair loss or other hallmarks many associate with cancer. This led to feelings of impostor syndrome — wondering if her experience “counted” as cancer. But as she reflects, cancer doesn’t have a singular face or story, especially a rare skin cancer like hers.
Mental health played a crucial role in Ciarra’s healing process. Despite working in the field, she admits that coping wasn’t easy. She leaned heavily on her support system, finding comfort in family, friends, and even an online community of others living with rare skin cancer. Small joys, like laughter with her aunt or cuddles from her dog, became powerful reminders of resilience.
Ciarra’s story is a testament to the power of self-advocacy. She emphasizes the importance of trusting your body, pushing for answers, and not feeling guilty for being persistent. Her advice? Take things one day at a time, cherish small victories, and don’t hesitate to seek support. Because in the end, what truly matters is showing up for yourself, no matter what.
Watch Ciarra’s video for more on:
How a small lump turned into a life-changing discovery.
How Ciarra’s mental health background helped (and sometimes didn’t) in facing rare skin cancer.
The diagnosis no one expected: what her rare skin cancer taught her about self-advocacy.
Feeling dismissed by doctors? Ciarra’s experience proves why trusting your gut is vital.
From fear to empowerment: her candid take on living with rare skin cancer.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
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) ...
