Learning How to Be Positive: Kelle’s Approach to Navigating Bile Duct Cancer
Kelle’s story is one of resilience, following the clues and getting the tests that would eventually lead to a diagnosis of bile duct cancer, or cholangiocarcinoma, in April 2024. Initially, her symptoms seemed minor. She experienced stomachaches after a ski trip, which she attributed to food poisoning, but additional symptoms like jaundice, intense itching, and fatigue led her to seek medical help.
Her husband, being a doctor, ordered an MRI that showed a blockage in her bile duct. After a series of procedures, including a stent placement and several biopsies, Kelle received the unexpected and life-altering news the night before a family vacation that she had cholangiocarcinoma (bile duct cancer). This was despite being initially told she likely didn’t have cancer.
While the news rocked her, Kelle took the advice of her doctor and decided to maintain some normalcy, continuing with plans to visit Hawaii while arranging expert care. Her and her husband’s research led her to the Huntsman Cancer Institute, where she would receive a life-saving Whipple procedure, also known as pancreaticoduodenectomy.
As a health coach, Kelle had always been proactive about her wellness, but this didn’t shield her from the emotional turmoil of a cancer diagnosis. She was forced to step outside her independent nature and lean into the support of family and friends. Her role as a coach helped her learn how to take her own advice and ask for help when needed, something she hadn’t been used to doing.
Kelle also developed creative coping mechanisms to manage the challenges of bile duct cancer treatment, from meditating during chemotherapy to practicing yoga and journaling. Even as she navigated the side effects of chemotherapy and immunotherapy, including fatigue and neuropathy, she remained committed to staying mentally and emotionally grounded.
Her attitude of self-advocacy extended beyond the medical side. Kelle was transparent about her diagnosis with her kids, explaining the changes ahead without overwhelming them. She also found strength in sharing her experience on her podcast, Ambitious-ish, where she empowers high-achieving women who may also be experiencing burnout. Kelle credits the pressures of constant hustle in her life for contributing to her cancer diagnosis. Since then, she’s worked on slowing down, listening to her body, and cultivating rest.
Kelle’s perspective on survivorship is all about embracing the rollercoaster without succumbing to fear or dread. With guidance from mentors, self-reflection, and a strong support system, Kelle has learned to redefine what it means to live a fulfilling life despite her diagnosis. By sharing her story, she provides hope, not only to those dealing with bile duct cancer but also to anyone who feels lost or overwhelmed by life’s challenges. Her experience is a reminder that, even in the face of uncertainty, there’s always a way forward if you listen to your inner truth.
Watch Kelle’s full interview to find out more about her story and discover:
How Kelle turned her bile duct cancer diagnosis into an opportunity for self-discovery and growth
How she navigated the emotional and physical challenges of bile duct cancer and what she learned along the way
Kelle’s advice on self-advocacy and building a supportive team of doctors when facing bile duct cancer
How she uses meditation, coaching, and self-care to thrive through her treatment for bile duct 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.
Melissa’s Life After DLBCL Relapse: Finding Strength in the In-Between
Melissa’s experience with diffuse large B-cell lymphoma (DLBCL) isn’t just about scans and chemotherapy but what comes after relapse. Diagnosed at just 30 years old, Melissa never imagined the lump in her breast would lead to a life-altering diagnosis, let alone a relapse nearly six years later. DLBCL, aggressive and fast-growing, quickly reshaped her world—twice.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Her first encounter with DLBCL was frustrating and terrifying. Doctors initially diagnosed her with an infection, but the prescribed antibiotics made everything worse. When she ended up in the ER, a CT scan finally led to a biopsy and a phone call that changed everything.
Melissa’s initial treatment was intense. Six cycles of R-EPOCH chemotherapy and 20 rounds of radiation therapy left her physically and emotionally drained. Side effects like bone pain and severe fatigue made everyday life nearly impossible. She pushed through but never stopped feeling afraid, especially before every scan. That lingering fear of relapse haunted her, even when she was trying to live as fully as possible.
And then the relapse came.
Just after Christmas 2023, a painful lump under her arm set everything in motion again. This time, Melissa had to undergo a stem cell transplant, preceded by grueling high-dose chemotherapy. The process was not just physically taxing but also mentally and emotionally overwhelming. From losing her job to navigating endless appointments, to being isolated due to a wiped-out immune system, life after relapse never went back to “normal.”
Melissa describes feeling deep depression after her transplant. She expected to feel joy, but instead, she felt stuck. Recovery wasn’t just about healing her body; it meant rebuilding her mental health, confidence, and ability to trust her body again. Slowly, she emerged. She reconnected with family, leaned on her incredible support system (shout out to her sister!), and began doing the things that bring her joy.
Melissa continues to deal with anxiety around scans (scanxiety), but she’s more focused on living than worrying. She emphasizes the importance of self-advocacy, especially when less likely diagnoses, like DLBCL, aren’t immediately considered. Her story is an honest, empowering reminder that survivorship doesn’t mean everything is fine. Life after relapse is complicated, but it’s also filled with second chances and deeper appreciation for the everyday.
Watch Melissa’s story to find out more about:
What gave her the strength to keep going when everything changed
When she realized that her voice mattered
Who became her rock through every scan, treatment, and tough moment
Why she decided to share the hardest parts of cancer
How she rebuilt her life after her DLBCL relapse
Name: Melissa B.
Age at Diagnosis:
30 (relapsed at 36)
Diagnosis:
Diffuse Large B-cell Lymphoma (DLBCL)
Symptoms:
Lump in the left breast
Persistent rash (started near the belly button and spread)
Intense fatigue and energy loss
Treatments:
Chemotherapy: R-EPOCH
G-CSF: Neulasta (pegfilgrastim)
Radiation therapy
Surgery (to remove scar tissue and necrosis)
Autologous stem cell transplant
Thank you to Genmab and AbbVie for supporting our independent patient education content. The Patient Story retains full editorial control.
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.
I noticed a lump in my left breast… I went to my primary doctor. She ran some blood work, told me I had an infection, gave me some antibiotics
Introduction
I was diagnosed with diffuse large B-cell lymphoma twice. The first time was in 2017 and unfortunately, I relapsed in January 2024.
I’m a concert junkie, so I go to as many as I can afford to. I love tattoos and have quite a few. I have five cats who are my children. I love them. I like riding roller coasters. I love going to karaoke. I play video games. Sometimes, I enjoy relaxing and watching a movie.
When Something First Felt Off
I noticed a lump in my left breast. The kind of cancer I have is very aggressive and grows very quickly, so it went from a little lump to twice the size within a couple of months.
I went to my primary doctor. She ran some blood work, told me I had an infection, gave me some antibiotics, and sent me home. She even joked at one point and asked if I had a breast implant on one side because it was so much larger. That joke left a bit of a sour taste in my mouth.
I took the antibiotics, but I got worse. I was freaking out, so I called my mom and she said, “Go to the emergency room. They’ll probably lance the infection. You’ll be fine.”
I Experienced Other Symptoms
I got a bad rash, which is very common with lymphoma. It started around my belly button. At first, I thought I was allergic to the metal in my belt buckle. Then it started going down my back and my legs. I thought I was allergic to my laundry soap or body wash, so I started switching everything to unscented. I thought it was an allergy, so I put cortisone cream, but nothing was working.
I was also incredibly tired all the time. I didn’t want to do anything. All I wanted to do was go home to sleep. I wasn’t the sleepy kind of tired. I was drained and had no energy, so I didn’t want to do anything. I thought I was experiencing the usual side effects of having an infection. I wasn’t having fun. I was going to bed super early. I was taking naps. The rash didn’t hurt, but it itched and there was nothing I could do to relieve the itching.
I didn’t think it was serious. I was 30 years old. Cancer doesn’t cross your mind at that age.
Finding Out I Didn’t Have an Infection But Needed a Biopsy
When I took the antibiotics and my symptoms got worse, I got scared. The doctor told me what to do, which I did, but it didn’t work, so I decided to call my mom. My mom was trying to calm me down, telling me everything was fine, and to go to the emergency room so they could take care of me.
They did a CT scan. When the doctor walked in and said, “It’s not an infection,” cancer never crossed my mind. They gave me a request for a biopsy and told me to have it done immediately. I thought it was weird. At the time, I didn’t think it was serious. I was 30 years old. Cancer doesn’t cross your mind at that age.
I set up an appointment and, luckily, they had one available in a couple of days. When he walked into the room, he looked at me and said, “Did they tell you that you might have breast cancer?” Cancer wasn’t even in the realm of possibilities and that’s the first thing he said to me. I started bawling. He left the room and the nurse came over and comforted me.
When he came back, he explained what he was going to do. He showed me the giant needle that they were going to use to collect the sample for the biopsy. The procedure was ultrasound-guided, so I watched everything. He was professional, but for subsequent things that I needed a surgeon for, I specifically requested not to have him again.
The Moment Everything Changed
I heard back about a week later. It was a Monday morning and as I was getting ready for work, I got a call from Virginia Oncology Associates. They said, “We need to schedule an appointment.” I said, “May I ask why?” They said, “Oh, have you not talked to the surgeon yet?” I said, “No, I hadn’t heard from them yet.” It was an awkward conversation.
As I was on the phone with them, I got a call from the surgeon. He doesn’t have me come into the office but tells me over the phone. He said, “It’s not breast cancer, but you have this other type of cancer.” It took a minute before the tears began to fall. I went back to the other call and made the appointment with the oncologist.
After I hung up, I called my boss. I had been telling my boss about what was going on and my boss said, “You’re not coming to work today. Go be with your family.” I went to my mom’s house and shared the news. It was difficult to tell people.
I knew lymphoma was a type of cancer, but I didn’t know specifics about it. People are aware that cancer exists, but the various types aren’t widely known. I had no idea what to expect. I didn’t know what it would look like. I wasn’t sure I would be okay. I don’t know what kind of treatment. I knew nothing.
Every time I got a scan, I would get nervous a week or two before getting one.
My First Treatment Plan
My first treatment regimen was R-EPOCH. I had a port put in and I was in the hospital to receive chemotherapy for 24 hours over four days. They would give me 15 minutes off in between bags of chemo to take a shower. I would get premeds to try to help with the side effects and then I would get hooked up to another bag. On day five, I received rituximab. I would go home and get two weeks off in between cycles before I had to go back and do it again. I had to do that six times.
After each round, they gave me a shot of Neulasta (pegfilgrastim), which is designed to boost the immune system. For me, it felt like every bone in my body was breaking at the same time. It hurt badly. I took pain medicine, but nothing worked.
After chemotherapy, I did 20 rounds of radiation.
(Editor’s Note: R-EPOCH is an abbreviation for a chemotherapy combination used to treat certain types of non-Hodgkin lymphoma. It includes the drugs rituximab, etoposide phosphate, prednisone, vincristine sulfate [Oncovin], cyclophosphamide, and doxorubicin hydrochloride [hydroxydaunorubicin]. -National Cancer Institute, )
What Life Was Like Between My Original Diagnosis and Relapse
Anytime I got a rash or noticed anything off, I freaked out. I ended up getting another lump on my right breast at one point, so I went to the surgeon, but it turned out to be a fibroid. Everything was fine, but with every little thing, I was terrified.
I tried not to let it overwhelm me too much. Every time I got a scan, I would get nervous a week or two before getting one. I would freak out that something was going to show up and, thankfully, nothing ever did.
My very first follow-up scan showed scar tissue and necrosis, so they had to do surgery. After that, everything was perfectly fine. Anytime I would see scan results, I would always ask, “What does this mean? Is this bad?”
I try to live life to the absolute fullest, enjoy myself, and not let the little things bother me. I do things I’ve always wanted to do. I’m planning a trip that I’ve always wanted to go on. I’m going to start doing things on my bucket list because I think I’ve earned it.
I kept trying to tell myself that I would be fine. The first time I got diagnosed, I believed that I was fine. Now, it’s hard to tell myself that I would be fine because the first time, I wasn’t.
I was still hopeful. Though in the back of my mind, I knew that it could be DLBCL again.
A Second Lump Appeared
Right before Christmas, I started noticing a painful lump under my right armpit. I decided to have it checked because it hurt so badly. I went to the ER the day after Christmas, but they did nothing. They didn’t scan it, test it, or do blood work. I waited for four hours only for the doctor to see me for about 45 seconds and say, “Go see your surgeon.”
At that point, I was having scans every two years. I started having them every six months, then every year, and then every two years. I had a scan about eight months prior, but there was nothing. Again, this disease pops up and grows very quickly, so it could be nothing and then a week or a month later, there it is.
I had always been told that tumors do not hurt, which is true. Tumors themselves do not cause pain, but this lump hurt badly, so I thought maybe it was something else. Even when I went to see the surgeon, he agreed. He said the fact that it hurts is a good sign.
I was still hopeful. Though in the back of my mind, I knew that it could be DLBCL again. But I was past the five-year mark, almost at six years.
Finding Out the Cancer Was Back
Luckily, I was able to see him within a week. He did a biopsy, but this time, instead of the giant needle, they removed a lymph node from under my arm.
I got my biopsy results on MyChart. I was at work when I got the notification. I decided to take a look. When I read it, I thought, “This can’t be right. Are these my old test results?” I checked the date and saw that it was current. Then I broke down right in front of my boss. We talked for a little bit and he told me to go home, so I left for the day.
I called the surgeon’s office and, luckily, he called me back pretty quickly. He said, “It wasn’t what we were hoping for.” They gave me a referral back to the oncologist. I originally saw the same oncologist, but because they recommended that I do a stem cell transplant, I had to go with a different doctor.
I wasn’t ready to die, so I was going to do whatever the doctor told me to do, no matter how bad it sucks.
The Only Time That I Ever Feared Relapse Was Right Before a Scan
The only time that I ever feared relapse was right around a scan. I was afraid they would find something. Other than that, I tried hard not to think about it too much. If you’re constantly thinking about it and worried you’re going to get it again, it’s going to eat you alive.
They said to keep an eye out for the symptoms that I had. They also said that relapse occurs mostly within the first two years. It can come back after that period, but the first two years are the critical time.
Navigating DLBCL Relapse with My Loved Ones Was Hard
After I came home, I called my husband immediately, then called my mom. I was crying the whole time. I was scared. I didn’t know what was going to happen. Was it going to be as brutal? Was it going to be more aggressive because it’s the second time? How is this going to progress?
I had moments at night when I’d be lying with my husband and I would break down and say, “I can’t do this. I don’t want to do this. This isn’t fair.” But at the end of the day, I wasn’t ready to die, so I was going to do whatever the doctor told me to do, no matter how bad it sucks, and I’ll get through it. I still have a lot of life left to live.
I had a couple of close friends who were very supportive. My older sister lives 20 minutes from me and she is my absolute best friend in the entire world. She was there when I did chemotherapy the first time. She was with me in the hospital almost every morning. We would have a list of questions and when the doctor would come in, we would talk about them together. She went the second time when I did the stem cell transplant. She was there all the time. She is my ride or die. I love her to death.
‘There are different second-line treatments for relapse and stem cell transplant is one of them. We feel you’re a good candidate for it.’
The Plan Moving Forward
I talked to Dr. Burke first and he said, “There are different second-line treatments for relapse and stem cell transplant is one of them. This is going to be your best course of treatment because not everybody qualifies for that. We feel you’re a good candidate for it. Your body is strong enough to handle it, so we want you to do this. We think it’s your best chance of getting rid of this for good.”
They went in-depth. He introduced me to the new doctor who took over from there, who was also wonderful. His name is Dr. Simmons. He’s an amazing man. He’s very detailed. Anytime we went over anything, he would write it out. He drew charts, which I always appreciated because I’m a very visual person.
My medical team was pretty thorough. When they recommended it to me, they explained it in detail. They told me what was involved, how it worked, and how it’s recommended for certain situations.
I also learned not to research too much because though the Internet is full of knowledge, it’s also full of crap. When you try to Google your symptoms, everything comes up as cancer. It’s the same thing once you already have cancer. Everything looks awful. You’re going to die. You’re going to have all these horrible side effects. I limited my research because when I didn’t, I scared the crap out of myself.
How I Prepared for My DLBCL Stem Cell Transplant
To prepare for the process itself, they had to do a bone marrow biopsy to make sure my stem cells were cancer-free and everything was fine. I had to have my entire body examined from head to toe. I had to get dental clearance. They had to make sure that my body was strong enough to handle the chemotherapy and the transplant.
Before they do the transplant, you have to undergo six days of high-dose chemotherapy to wipe out your system because the transplant is like a restart. You have to make your body handle that because it’s hard. I was sick.
When they take out the stem cells, you sit in a room and can’t leave for about six hours, where they hook you up to a machine. I had the port on one side and a big catheter with tubes hanging out on the other side, which I had for weeks beforehand and had to be covered with a bandage.
The machine takes your blood out. It has two tubes. In one tube, the blood comes out and goes through the machine. It takes out the stem cells and then, through the other tube, the blood goes back. Someone comes in once in a while to check on you. Once they have your stem cells, they send them off.
They have to test the stem cells, make sure that they have enough and that they’re good to use. If they don’t get enough, you have to go back another day or however many days until they get enough. Thankfully, I got enough from a single apheresis session because it was horrible having to sit in a chair for six hours. It was so boring and the machine is loud.
Then you’re admitted to the hospital to undergo chemo. When it’s time for the transfusion, they bring your stem cells, which are frozen in a bag, and thaw them out. But it’s still cold and I could feel it while it was entering my body. The transfusion only took a few hours. They monitor you in the hospital for a while. I was there for two and a half weeks.
I didn’t know that when you do a stem cell transplant, it resets your immunity, so I had to get all of my immunizations all over again.
What Recovery Looked Like After My Stem Cell Transplant
Recovery took a while because I was in the hospital for two and a half weeks. I barely got out of bed, so it messed up my back. I couldn’t walk very well for a while. I had to go to physical therapy and a chiropractor for several months to try to regain some strength and fix my back.
I had to quarantine for a while until my immune system started rebuilding. I had to stay away from people. I was on so many medications. I recently stopped taking an antiviral.
The first anniversary of my transplant was on July 8, 2025. They said I had to take the antiviral for a year and now I don’t, so that’s one less pill I have to take. I didn’t know that when you do a stem cell transplant, it resets your immunity, so I had to get all of my immunizations all over again. Six months after the transplant, I’ve had four appointments, wherein three of them were six shots each.
I have to get a few more. Some are live vaccines that they can’t do within the first two years of the transplant. I still have a couple of appointments sometime in the summer of 2026 to get more shots, but I’m done this year. I was so excited. The last appointment I went to, when she said, “You’re done for the year,” I did a little dance.
I still have a lot of doctor’s appointments. I get blood draws very regularly and get scans every six months. I had one done in May 2025 and it came back totally clear. My doctors’ appointments are starting to slow down. For the first few months, it seemed like I had an appointment every week or two. I was constantly doing something.
How Treatment Impacted My Day-to-Day Life
I tried to do the treatment while working, but I was taking so much time off from work because I got so sick from the treatment. I ended up losing my job, so I was out of work for a little over a year. I only recently started working again.
It’s hard. The first time around, because of the intensity of the treatment, there was no way I could work. By the second time, I tried to continue working, but I was so sick that I was missing so much work.
There are things outside of treatment that aren’t talked about enough, especially after finishing treatment. It’s not the end of it. There are still challenges. You’re still sick. You’re still dealing with doctors’ appointments. You’re still dealing with bills. Even with insurance, medical bills can get crazy and there’s a lot that you don’t think about. Navigating life with no immune system, I would be afraid to leave my house because a cold could take me out.
Getting anxious about it isn’t going to help the situation. It’s going to happen if it’s going to happen. If it’s not, it’s not.
What Survivorship Looks Like for Me
I went through a deep depression for a little while. After I finished, I thought I would be happy and celebrate, but because I was confined for so long, I couldn’t go out. I’m stuck and can’t do anything.
Once I was finally rebuilding, starting to get my immune system back, and able to venture out a little more, I came out of it and now I’m enjoying and living life to the fullest. I go out as much as I can. I see my family and friends. I do everything that I can.
I appreciate my family and my friends. I appreciate things more than I used to, like doing normal everyday things such as going to the grocery store. When you go through a time when you can’t do those things, they mean a lot more. Things on my bucket list that I’ve always wanted to do are much higher priority in my life now.
I Still Experience Anxiety Before Scans
I still feel a little bit of anxiety, but it’s not as bad as the first time around. At this point, getting anxious about it isn’t going to help the situation. It’s going to happen if it’s going to happen. If it’s not, it’s not. There’s no point getting worked up over it.
I’ve only had two scans so far. I had my remission scan in October 2024 and then a follow-up scan in May 2025. The only thing I hate is having to drink barium. There are different flavors, but they don’t help. It’s like a runny, chalky yogurt. It’s awful. And you have to do it every scan.
I don’t mind the scan itself. MRIs are loud and scary, so I don’t like them. PET and CT scans are fine. It’s just the barium. I hate the barium.
If you feel that something is up, even though they tell you that you’re fine, go to see a different doctor.
What I Want Others to Know
During DLBCL treatment, life sucks. There’s no way around it. They give you all kinds of medications to help with the side effects, but it’s going to suck. You’re going to be tired. You’re going to be sick. But know that there is an end to it all. It gets better. You come out the other side. Most people have a completely different appreciation for life and I definitely did.
The only thing that’s weird for me is when I go to doctors’ offices and you have to fill out forms that ask if you’ve ever had cancer before and I have to check yes. That still weirds me out.
Why Self-Advocacy is So Important
Don’t give up. You have to be your own advocate because nobody else will. People in the medical field do their best, but a lot of the time, they’re so far removed from it because they don’t want to get overly emotional. It seems they don’t put their best foot forward when it comes to that. It almost seems like you’re just a number.
It hurts and it sucks that that’s the truth. Especially in the ER, they have to get you in and out. But if you feel that something is up, even though they tell you that you’re fine, go to see a different doctor. Do something else. You have to be your own advocate.
Listen to your gut. Don’t always listen to the doctors. Listen to yourself. You know yourself better than anybody else knows you. I’m living proof of that.
Thank you to Genmab and AbbVie for supporting our independent patient education content. The Patient Story retains full editorial control.
How Getting a Second Opinion Saved Crystal’s Life After a Very Rare Soft Tissue Sarcoma Diagnosis
Crystal is the kind of person who lights up a room — bubbly, energetic, and always smiling. But in February 2022, her world shifted when she started having severe trouble urinating. What started as one uncomfortable ER visit turned into a life-changing realization: she had a malignant peripheral nerve sheath tumor (MPNST), a very rare type of soft tissue sarcoma tied to her neurofibromatosis type 1 (NF1).
Doctors initially thought it was a urological issue. After being catheterized twice, Crystal pushed for more testing. When her request for a CT scan was denied, she advocated fiercely for herself until they agreed. That scan revealed a mass. It was a shocking moment that would eventually lead to the correct diagnosis of MPNST sarcoma, a type of cancer that requires highly specialized care.
Despite discomfort with change and loyalty to her first care team, Crystal followed her instincts — and the advice of supportive family and friends— and got a second opinion. That decision changed everything. Her new sarcoma specialist reviewed all her records and immediately diagnosed her with MPNST sarcoma, which aligned with her NF1 diagnosis.
Not only did this doctor explain the cancer more clearly, but he also had a complete surgical plan laid out at their very first meeting. Crystal finally felt seen, heard, and, most importantly, safe. That second opinion gave her more than just answers; it gave her a confident path forward for treating her MPNST sarcoma.
Crystal’s surgery was complex and intense: a procedure that included bladder and rectum removal, a permanent colostomy and urostomy, and reconstructive work. Recovery was rough, both mentally and physically. However, Crystal managed to get through it by staying informed, engaging with online communities, and learning how to adapt to her new normal. Social media became unexpected lifelines for practical advice and emotional support. Navigating life after MPNST sarcoma isn’t easy, but Crystal found strength in unexpected places.
Crystal is now nearly three years cancer-free. She emphasizes how essential it is to advocate for yourself, ask questions, and not be afraid to speak up, even if doing so feels uncomfortable. Her story highlights how vital it is to meet with a doctor who specializes in your specific cancer, especially with rare cancers like MPNST sarcoma. A second opinion didn’t just help; it gave her a real shot at living her life again.
Watch Crystal’s full video to find out more about her story:
Hear how a wrong diagnosis nearly changed everything and how Crystal uncovered the truth about her MPNST sarcoma.
Find out why she pushed for a CT scan and how speaking up became her most powerful tool.
Learn how social media and community support helped her face life after surgery with two ostomy bags.
Discover why choosing a sarcoma specialist made all the difference in Crystal’s care.
See how Crystal’s second opinion gave her not just a new diagnosis but a real plan and peace of mind.
Name: Crystal S.
Age at Diagnosis:
29
Diagnosis:
Malignant Peripheral Nerve Sheath Tumor (MPNST)
Symptoms:
Inability to urinate
Intense pain due to inability to urinate
Treatments:
Chemotherapy
Surgeries: cystectomy (bladder removal), proctectomy (rectum removal or Barbie butt surgery), permanent colostomy and urostomy, partial hysterectomy, reconstruction
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)
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How Speaking Up Led to Drea’s Rare Cancer Diagnosis of a Gastric Neuroendocrine Tumor (gNET)
Drea was 23 and in her third year of college when her world shifted. What started as dizzy spells during yoga spiraled into frequent fainting, crushing fatigue, and a deep gut feeling that something wasn’t right. Although she voiced her concerns again and again, doctors attributed her symptoms to anemia, her weight, her diet, and even her anxiety. As a young woman, overweight and navigating the chaos of college life, Drea felt unheard, unseen, and constantly dismissed. All of this would change with a gastric neuroendocrine tumor diagnosis—but first she would have to go through more symptoms.
It wasn’t until Drea’s hemoglobin dropped to a dangerously low level and she landed in the emergency room that the urgency finally clicked for the medical team. After an endoscopy and a CT scan, doctors discovered a gastric neuroendocrine tumor (gNET), a rare type of stomach cancer that had been silently bleeding for months. Her symptoms finally made sense, but the diagnosis shattered her. She spiraled, felt disconnected from her identity, and grieved the life she thought she’d have.
Drea’s authenticity shines as she reflects on the isolation of waiting for answers, the trauma of not feeling heard by medical professionals, and the emotional toll of watching her friends graduate while she remained hospitalized. Therapy and support from loved ones became lifelines. Her experience underscores the critical importance of self-advocacy, a voice she had to amplify even when others told her nothing was wrong.
The diagnosis wasn’t the aggressive gastric cancer doctors feared, but a well-differentiated grade 1 gastric neuroendocrine tumor. Still, it meant a life-changing surgery: a total gastrectomy with a Roux-en-Y reconstruction. (Editor’s Note: A total gastrectomy involves removing the whole stomach. A Roux-en-Y reconstruction involves rejoining the esophagus and the small intestine.)
Drea, a self-described foodie, mourned the loss of her ability to eat freely. The physical recovery was brutal, but the emotional healing ran even deeper. Eating remains a balancing act. Social events require planning, but she’s learned to embrace a new kind of normal — one that’s grounded in self-awareness, patience, and gratitude. She surrounds herself with people who love her exactly as she is and is slowly reclaiming parts of herself that were buried under fear and uncertainty.
Drea’s story is a powerful reminder that young people can get serious diagnoses and that symptoms, like unexplained fatigue, fainting, or persistent anemia, shouldn’t be ignored. Her honesty is refreshing, her strength palpable, and her advocacy deeply empowering.
Watch Drea’s full interview to find out more about her story:
What it’s like to be young, sick, and told, “You’re too healthy for cancer”
How fainting during a yoga class became the first clue that something serious was happening
How a missed diagnosis almost cost Drea everything, including her life
The moment she realized no one was going to advocate for her, except herself
What losing Drea’s entire stomach meant for her daily life and mental health
Name: Drea E.
Age at Diagnosis:
23
Diagnosis:
Gastric Neuroendocrine Tumor (gNET)
Staging:
Stage 3
Grade:
Grade 1
Symptoms:
Fainting spells
Fatigue
Dizziness
Anemia
Shortness of breath
Absence of menstruation
Unexplained weight loss
Night sweats
Treatment:
Surgery: total gastrectomy (complete removal of the stomach) with a Roux-en-Y reconstruction
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.
How Wyatt Navigated a Surprise Diagnosis of Stage 4 Non-Small Cell Lung Cancer with KRAS G12D Mutation
When Wyatt found out he had stage 4 lung cancer in early 2021, he had no idea it would reshape not just his health but also his purpose. Diagnosed during the height of the COVID pandemic, Wyatt’s experience navigating stage 4 non-small cell lung cancer with a KRAS G12D mutation has been anything but typical, and he’s turned that into his strength.
It all started with migraines so intense they’d knock him out for days. Wyatt visited the emergency room multiple times, but doctors told him it wasn’t serious. Then came vision loss and frightening neurological symptoms, so he went to see his neurologist, who told him he had to have his shunt replaced. After a CT scan post-surgery, they spotted the lesions in his lungs.
The initial reassurance of it not being cancer quickly gave way to a life-changing diagnosis: stage 4 non-small cell lung cancer. Wyatt was blindsided. No cough, no pain, no classic signs — just cancer hiding behind confusing symptoms.
From the beginning, Wyatt had to learn the power of self-advocacy. He realized that doctors don’t always connect the dots unless you speak up. At one point, he had to document everything he was eating and throwing up just to be heard. For him, building a relationship with the right oncologist made all the difference.
Living with stage 4 non-small cell lung cancer meant becoming an active participant in his care. Wyatt didn’t know about biomarker testing or what the term “KRAS” meant at first. However, over time, he discovered communities like KRAS Kickers and began connecting with others like himself. That connection was powerful, especially for someone who also lives with HIV and has often felt overlooked in medical settings.
Through trial and error with treatment, Wyatt learned to advocate, adjust, and persist. He’s on his seventh line of treatment now, managing side effects like neuropathy, nausea, fatigue, and chemo brain with humor, creativity, and ginger candy. But what truly fuels him is sharing knowledge and support.
Wyatt’s not just surviving — he’s making sure others don’t have to feel as lost as he once did. He’s working on building an online document of resources, pushing for access and inclusion, and showing up for others. Community has been a lifeline, and Wyatt’s working to strengthen it, one conversation and connection at a time.
Watch Wyatt’s full interview to find out more about his story:
Discover how a brain shunt led to an unexpected lung cancer diagnosis.
How self-advocacy helped Wyatt reclaim control over his care.
Learn why finding the right doctor is more important than just going to a big-name hospital.
See how one resource-filled document opened doors Wyatt didn’t know existed.
From cancer camps to ginger tea hacks, he shares tips with heart and humor.
Name: Wyatt D.
Age at Diagnosis:
33
Diagnosis:
Non-Small Cell Lung Cancer (NSCLC)
Staging:
Stage 4
Mutation:
KRAS G12D
Symptoms:
Intense migraines
Vision loss
Muscle cramping in the hands
Fainting
Treatments:
Chemotherapy
Immunotherapy
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.
Haley’s Advice After Her Pancreatic Neuroendocrine Tumor (pNET) Diagnosis
When Haley found out she had a pancreatic neuroendocrine tumor (pNET) in 2022, it didn’t happen in a dramatic, sudden moment. Instead, it was a slow build-up of digestive issues she couldn’t ignore anymore. She finally told her doctor that she needed to be seen. That request paid off. After an ultrasound revealed a tumor and more testing confirmed it, she received a diagnosis that changed everything.
At first, the news was overwhelming. Haley describes the moment she saw her scan and spotted something bright, white, and round in her abdomen. It was a surreal, gut-wrenching image. Humor became her coping tool, and calling the tumor a “meatball” made the reality a little more bearable.
From the beginning, Haley took an active role in her care. She scoured online test results, Googled medical terms, and advocated for the best surgical team to perform the complex Whipple procedure. This mindset helped her feel empowered, even in moments of uncertainty. She was shocked to learn her pancreatic neuroendocrine tumor wasn’t genetic, especially given her family history of cancer on her mom’s side.
What stands out in Haley’s experience is her focus on mental health and identity. She allows herself to feel everything — grief, fear, gratitude — and takes things day by day. Her humor, spirituality, and self-awareness keep her grounded through it all. Despite her fears about recurrence, she leans into positivity and self-talk to keep her mind strong.
She also became more open about her experience with a pancreatic neuroendocrine tumor, showing off her scar in modeling photos and letting it be a source of pride rather than shame. At first, she kept the diagnosis private and even tried to push a new partner away. But over time, she realized that being vulnerable allowed her to receive support and to heal emotionally.
Navigating life post-surgery hasn’t been easy. Learning how her new body works, especially around eating and digestion, is an ongoing process. She now works with a team of specialists to stay healthy and informed. But above all, Haley emphasizes this: listen to your body, trust your intuition, and don’t be afraid to speak up. Neuroendocrine pancreatic cancer may have disrupted her life, but it hasn’t defined it.
Watch Haley’s full interview to find out more about her story:
Discover how she turned a shocking cancer diagnosis into a powerful reminder to trust your body.
As a model, find out how she reclaimed her identity in the process.
What it means to advocate for yourself in the face of a life-altering diagnosis.
Learn how Haley reshaped her mindset after losing part of her stomach, pancreas, and gallbladder.
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.
How a Mom with Stage 4 Colon Cancer Turned Pain Into Purpose
When Lauren began feeling off in early 2025, she figured it was just constipation, since she was usually irregular. But when she found herself running to the bathroom up to 27 times a day, she knew something wasn’t right. Despite her persistence, early appointments with her primary care provider and even an ER visit didn’t give her the answers she needed. Her path to a stage 4 colon cancer diagnosis would take perseverance.
Eventually, her gut instincts led her to push for a GI consult, and that’s when her life changed. After a colonoscopy couldn’t even get past the blockage, a CT scan finally revealed the unthinkable: stage 4 colon cancer, specifically a rare and aggressive type called signet ring cell carcinoma (SRCC).
Lauren’s diagnosis came fast, and with it, a whirlwind of decisions. Within hours of her arrival at the ER, doctors were talking about cancer and prepping for emergency surgery. Lauren underwent a colon resection and came home with a colostomy bag. At just 41 years old, she found herself facing a diagnosis most people associate with much older adults. And while the shock was overwhelming, Lauren chose to face it with openness, strength, and grace.
Navigating treatment has been tough. Chemotherapy brought on intense neuropathy, nausea, and deep fatigue, but Lauren focuses on what keeps her going: her two young children, her incredibly supportive husband and family, and her inner fire. Talking to her kids about the changes in her body, including the colostomy bag and the port in her chest, wasn’t easy, but she handled it with honesty and love. Her children quickly adapted. Their curiosity turned into acceptance, and their resilience reminded Lauren that life, even now, is still full of beauty.
Since being diagnosed with stage 4 colon cancer, Lauren’s perspective has shifted in powerful ways. She’s slowed down, learned to cherish simple joys like reading in the backyard, and poured her heart into writing children’s books, stories inspired by her daughter’s autism diagnosis. Cancer pushed her to finally do what she loved.
Lauren now advocates fiercely for early screenings, especially since her cancer type often doesn’t show symptoms until it’s advanced. She also urges others to trust themselves. If something feels off, speak up. Her story is a moving reminder that you don’t need to look sick to be facing something serious, and that even in the hardest moments, it’s possible to find love, purpose, and joy.
Watch Lauren’s full interview to find out more about her story:
Discover how a bathroom log helped lead to a life-saving diagnosis.
Learn how Lauren explained stage 4 colon cancer to her young children in the most beautiful way.
Find out why her daughter’s autism diagnosis gave even deeper meaning to her children’s books.
Hear how Lauren’s life shifted from corporate chaos to creative purpose.
See how love, laughter, and support lifted her through one of life’s hardest moments.
Name: Lauren G.
Age at Diagnosis:
41
Diagnosis:
Colon Cancer (Signet Ring Cell Carcinoma)
Symptoms:
Frequent urges to have bowel movements (up to 27x/day)
Incomplete evacuation
Abdominal bloating
Treatments:
Surgeries: colectomy (colon resection), colostomy bag placement
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.
How Sasha Faces the Mental & Emotional Weight of Stage 4 Ocular Melanoma
When Sasha first felt eye pressure and dryness in late 2019, she never imagined it would lead to a stage 4 ocular melanoma diagnosis. At first, doctors attributed her symptoms — headaches, vision changes, and even a black curtain covering part of her eye — to migraines or retinal detachment. But deep down, Sasha felt something wasn’t right.
Sasha trusted her instincts, pushed for more opinions, and eventually got the diagnosis: a malignant tumor in her eye. Within days, she underwent emergency surgery to remove the eye. The physical loss was difficult, but the emotional impact left a deeper scar.
Soon after, routine scans revealed tumors in Sasha’s liver and lungs, confirming that her cancer had already been stage 4 ocular melanoma when it was discovered. This is a rare and aggressive disease with limited treatment options. The mental toll was immense. The uncertainty, the frequent scans, and the lack of a cure left her navigating a reality that changed every few months.
Sasha tried multiple treatments: dual immunotherapy, radiation, and eventually traveled to Germany for chemosaturation and chemoembolization, all financed in part through a crowdfunding campaign. Accessing care beyond what was offered locally required advocacy, persistence, and the courage to question even trusted doctors.
At one point, Sasha’s immunotherapy was discontinued in Finland. Frustrated but determined, she sought opinions from experts in France and Germany, who confirmed she should’ve stayed on treatment. Thanks to crowdfunding and her research, she continued privately funded therapy, which she still receives every other week.
Living with stage 4 ocular melanoma isn’t just a medical ordeal, as it affects every corner of Sasha’s life. From the limitations of monocular vision that challenge her work as a visual artist to the difficult reality of not being able to plan for a family, the impact is personal and profound. Through it all, she emphasizes the importance of mental health. The hardest part isn’t always the physical treatment — it’s the emotional weight of knowing the disease may never go away.
Sasha’s story is a powerful reminder that self-advocacy saves lives, mental health deserves more attention, and financial support can be life-extending. Her voice is strong, real, and deeply needed in conversations around disability, rare cancer, and patient empowerment.
Watch Sasha’s interview to find out more about her story:
How a black curtain over her eye changed everything.
Why she had to erase any reminder of the day she lost her eye.
The emotional cost of rare cancer and how she’s coping.
Why she stopped making long-term plans.
One simple piece of advice she believes every patient must hear.
Name: Sasha F.
Age at Diagnosis:
28
Diagnosis:
Ocular Melanoma
Symptoms:
Eye pressure
Eye dryness
Intense headache
Red blood vessel in the eye
Black curtain in vision (partial vision loss)
Treatments:
Surgery: enucleation (eye removal surgery)
Immunotherapy
Radiation therapy
Chemosaturation
Chemoembolization
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: Sore on the tongue, which caused pain during eating and speaking; changes in the color and texture of the tissue where the sore was located Treatments: Surgery (partial glossectomy, radical neck dissection, reconstruction), radiation
...
From Foot Pain to Lung Cancer: Kathrin’s Unexpected Stage 4 ALK+ Diagnosis
When Kathrin was diagnosed with stage 4 ALK+ lung cancer in 2024, it came as a complete shock. She didn’t have a cough, chest pain, or shortness of breath — none of the symptoms you’d expect. Instead, it all started with subtle signs: persistent fatigue, frequent illness, and a lingering pain in her left foot that she chalked up to an injury.
Being a fitness professional, Kathrin assumed it was nothing serious, but after the pain worsened, an MRI revealed something unexpected: a tumor in her foot. Initially thought to be benign, the biopsy showed it was a malignant metastasis. From there, a full-body PET/CT scan uncovered the real culprit: stage 4 ALK+ lung cancer, which had already spread to her bones, abdomen, and liver.
Despite the shock and the immediate fear of not surviving, biomarker testing provided a silver lining. Kathrin was ALK-positive, making her eligible for targeted therapy. Treatment began with radiation on her foot, followed by a daily ALK inhibitor pill. Within weeks, the treatment produced remarkable results.
Kathrin’s scans looked almost clear, which felt like being handed back her life. She describes this part as surreal, going from imagining death to being filled with hope. While the physical treatment has gone well, the emotional part has been more complex. Even though the cancer was under control, the reality of living with an incurable condition remains. She knows it may come back, so she consciously chooses to focus on what she can control: her mindset, her movement, and her moments of joy.
Exercise has been Kathrin’s anchor. Even during radiation, she kept moving. For her, movement isn’t just fitness; it’s therapy. It’s how she reconnects with herself, processes her emotions, and taps into her inner strength. She emphasizes the importance of staying active, not just for the body but for mental clarity and emotional balance.
Her story highlights a powerful truth: stage 4 ALK+ lung cancer doesn’t always look like what we expect, especially in women. Kathrin’s experience is a reminder of the importance of advocating for your health, listening to your body, and honoring your strength, even when life throws something unimaginable your way.
Watch Kathrin’s full interview to learn more about her story:
She had no cough, just foot pain. That’s how her stage 4 ALK+ lung cancer was discovered.
Kathrin opens up about the emotional whiplash of a sudden diagnosis.
How yoga and exercise became her daily lifeline through stage 4 ALK+ lung cancer.
Why Kathrin believes powerful treatments and positivity can change everything.
Name: Kathrin W.
Age of Diagnosis:
44
Diagnosis:
Lung Cancer
Staging:
Stage 4
Mutation:
ALK+
Symptoms:
Weakness
Decline of performance in sports
Depression
Pain in left foot
Treatments:
Radiation therapy
Targeted 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.
Symptoms: Pelvic pain and discomfort, bladder issues related to pelvic tumors, incontinence, pain in the lower back and hip Treatments: Chemotherapy, immunotherapy, radiation therapy, targeted therapy (lorlatinib)
Why Speaking Up Matters: Dorinda’s Life with Bladder Cancer
When life threw curveball after curveball at her, she didn’t flinch; she adapted. She was living in a fifth-wheel trailer on her parents’ property, helping care for her dying mother, when she noticed something alarming: a significant amount of blood in her urine. While she initially thought it might be a urinary tract infection, her instincts told her otherwise and she was right. It turned out to be bladder cancer.
Navigating the healthcare system wasn’t easy, but she stood firm, advocating for herself by insisting that something was wrong. That determination led to a cystoscopy, where a tumor was found on her bladder wall. She describes it looking almost like a piece of coral — strange, fascinating, and life-changing.
She had never heard of bladder cancer before her diagnosis. Like many, she associated cancer with more commonly discussed types, like breast or lung cancer. But her diagnosis opened her eyes to how little awareness exists about bladder cancer, especially in women.
Her care team, especially her urologist, played a major role in helping her feel empowered. He explained everything clearly and respectfully, building trust. When he told her, “You’re going to be fine,” she believed him. That kind of confidence, paired with open communication and mutual respect, made all the difference.
Treatment involved a transurethral resection of bladder tumor (TURBT) surgery and intravesical BCG therapy, which hit her hard with fatigue and other side effects. Despite this, she showed up — until she no longer could. She decided to stop maintenance BCG, fully informed and supported by her doctor. Later, when a growth appeared in her bladder, she underwent surgery again, followed by intravesical chemotherapy. Thankfully, it wasn’t cancer.
Throughout her experience, she became her own best advocate — asking questions, researching treatment options, and connecting with others online. Sharing her story on social media not only helped her process what she was going through but also gave others a sense of community and hope. She encourages everyone to speak up, take notes, and never feel guilty for asking questions because your voice matters.
She reminds us that people living with bladder cancer deserve compassion, informed care, and access to all possible options. Most importantly, they deserve to be heard.
Name: Dorinda G.
Age at Diagnosis:
59
Diagnosis:
Non-Muscle Invasive Bladder Cancer (Malignant Neoplasm of Bladder Trigone)
Symptom:
A significant amount of blood in the urine
Treatments:
Surgery: transurethral resection of bladder tumor (TURBT), surgery for papillary lesion
Immunotherapy: BCG (initial and maintenance)
Chemotherapy
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 to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
People describe me as being strong. I’m divorced and I’ve raised kids on my own. I’ve survived cancer and domestic violence. I didn’t let what happened stop me or slow me down. I’ve looked at everything that’s happened to me as an opportunity for learning and growth.
During the pandemic, some circumstances came up and I needed a place to live. Since everything was shut down, I couldn’t view rental properties. Prices went through the roof, doubled and tripled in some cases.
My mom was ill, bedridden, and on hospice care. My parents needed me close by, so I bought a used fifth wheel in fair condition and parked it on their property. That’s where I was living when I was diagnosed. I helped care for my mom until she passed.
When I turned 59, one thing after another started to happen. I was taken to the emergency room, where they found out that my gallbladder was full of gallstones and I had a blockage. It caused a lot of issues with my liver. They had to get everything under control before they could send me home, so I was in the hospital for four or five days. A couple of months after that, I found out I had bladder cancer.
But how I view things is: what other option is there? Lying down, playing victim, and saying woe is me was never an option. The choice was to keep going and keep doing. You do the best you can every day and get through it.
When I Knew Something Was Wrong
I saw a significant amount of blood in my urine. I had recurrent sinus infections, so I scheduled a visit with whoever was available at my doctor’s office to get in right away.
I knew the assistant who was checking me in and she asked how I was doing. I said, “It’s just another sinus infection. But there’s one other thing. There’s a lot of blood in my urine.” She said, “Oh my gosh. Let’s get you into the bathroom. I’m going to set you up. We need a sample.”
Right away, she did everything she needed to do. When the provider came in to talk to me, he tried to explain that I wasn’t seeing blood in my urine, but it must be something I ate. I told him, “I’m 59. I’ve had five children. I think I know very well what blood looks like in the toilet and a lot of it.”
As the results come up on his computer screen, he says, “Oh my God, that’s a lot of blood.” I’ve never gone back to that provider again. He was trying to dismiss my symptom. It’s a real problem in women’s health across the board for all various kinds of reasons, especially — and unfortunately — with male providers. If you look at the history of medical research, women are blatantly ignored concerning their symptoms. Men are researched more than women.
The cystoscopy was uncomfortable but manageable. It wasn’t painful at all.
Imagine a woman on her menstrual cycle seeing blood in the toilet; it was like that. It was a significant amount of blood and I knew that. It wasn’t a spot on the toilet paper.
It started with tiny spotting around three to five days prior, which was thought of as possibly a urinary tract infection (UTI). I may not be remembering clearly, but I think I was given a round of antibiotics, and the amount of blood kept increasing.
I happened to also be sick and wanted to be seen for that sinus infection, so I decided to tell them about the blood because I knew that something was wrong. That wasn’t normal. There was no pain with urination. There wasn’t any pressure. There were no other symptoms.
When thedoctor saw the result of my urine test, I was given a quick referral to a urologist.
Cancer Research UK / Wikimedia Commons
The Moment Everything Changed
My initial appointment was with the physician assistant (PA) in the urologist’s office. We discussed what was going on and I gave another sample for a urine test, which they sent off to check for cancer cells. When they called me back, they said, “Great news. There are no cancer cells in your urine, but we still want you to come in and see the urologist for a cystoscopy.” Lo and behold, they found a tumor.
What My Cystoscopy Was Like
The cystoscopy was uncomfortable but manageable. It wasn’t painful at all. You undress from the waist down and put your feet up in the stirrups. They use lidocaine at the opening of the urethra, which helps tremendously.
They insert the scope, which looks like a catheter with a camera at the end, through your urethra to see into your bladder. There was a screen facing me, so I could see everything that he saw. Everything was explained to me.
I understand it’s a lot different for a man. My son-in-law recently had one and he did not have a good experience at all. I think it’s different for him because our anatomies are different, which I think makes it less traumatic for a woman. I may be completely wrong because I only know from my experience. I don’t look forward to it, but I go every time they ask me to come in for one.
My urologist listened to me. I feel heard.
Partway through treatment, I got COVID at the same time I had my BCG treatment, and the side effects were compounded exponentially. I was very ill. I was so fatigued and couldn’t get out of bed. It was pretty bad, so I declined further maintenance treatment.
It was very interesting and pretty fascinating because the tumor looked like a little sea anemone or piece of coral. It had a funky shape and was stuck on the bladder wall. After the cystoscopy, he gave me a one-dose antibiotic right away to help stave off any kind of UTI. He took me into his office and brought out all the pamphlets on bladder cancer.
During the scope, he didn’t say that it was cancer. I credit him for my reaction to it because his bedside manner was outstanding. He was very confident. He said, “This is what it is. We’re going to remove it. Then we do this treatment and you will 100% be fine. You are going to recover.” He was so confident. I put my trust in my urologist. He’s amazing.
I was involved in an online journey mapping. Several patients, caregivers, and doctors had experience with bladder cancer. I was listening to other people’s stories with their providers. I felt so incredibly fortunate to have the provider I have. Listening to other people’s stories made me feel so grateful for my experience.
I’m Grateful That My Doctor Listens to Me
The big thing for me was that my urologist listened to me. I feel heard. I provide him with that same respect and listen to him because he has the expertise. He understood why I wanted to stop the maintenance treatment. We discussed what that would look like in the future if there’s a recurrence and I understood. He made everything very clear.
He honored my decisions and didn’t try to sway me. We discussed the potential consequences of stopping treatment, but I still went ahead.
I had missed so much work. Part of me was afraid of how long my employer was going to let me miss work, but they were very understanding. After a while, though, you cannot afford not to be paid. Everybody has to have an income. It was affecting my life. At that point, I felt like it wasn’t going to come back and that I had a handle on it.
I agreed to keep coming in every 90 days for a cystoscopy to be checked, which was good because by December, I had a growth in my bladder.
How I Felt After Finding Out I Had Bladder Cancer
I was in shock. I was texting my adult daughters from the office, telling them I have cancer. It’s something that you see happens to other people, but don’t think it would happen to you, but now it is.
Cancer’s a scary word. It’s a scary diagnosis because the cancers that we see and hear about most often don’t always have good outcomes. I didn’t even know about bladder cancer until I got it. I’d never heard about it. I had no idea that you can get cancer in the bladder.
It was very surreal. It was a lot of information to absorb. I didn’t cry or freak out. I credit my urologist for that because he was so good at talking me through all of it. I felt confident that after I get this procedure done and do this treatment, I’ll have done it.
The last time I saw him, I talked to him about it. I told him that after hearing other people’s stories, I couldn’t thank them enough. I have the same nurse every time I go in. My care team is phenomenal and I’m grateful for that, especially after hearing other people’s stories.
I didn’t have a lot of emotions. I looked at it as fact. This is what’s happening and this is what’s going to happen next. During treatment, there was a time when I was in a very negative headspace. When I went to my appointment, I told them, “I don’t want to be here. I don’t want to do this anymore. I’m done. I’m over it. I’m here because I know I have to. I know this is what’s best, but I don’t want to do it anymore.”
I was sick and tired of having medication put into my bladder. I was tired of undressing from the waist down. I was tired of putting my feet in stirrups. I was just over the whole experience. I had my first BCG treatment in June 2023. By January 2024, I started getting that feeling of not wanting to do it anymore and by September, I said I didn’t want to continue with the maintenance treatment.
On one of my TikTok videos, some people asked me about discontinuing the maintenance treatment and whether you’re allowed to do that. My doctor didn’t say I could stop. He understood where I was coming from.
I agreed to keep coming in every 90 days for a cystoscopy to be checked, which was good because by December, I had a growth in my bladder. It turned out to be non-cancerous, thank goodness, but I still had to go in and have it removed through surgery and have the pathology done. At that time, we didn’t know. Because it looked like the original tumor, we did chemotherapy in the bladder in December.
I communicated with people through my videos, which helped me deal with what I was going through.
Learning More About Bladder Cancer
I read the bladder cancer pamphlets multiple times. Then I would get online and Google everything, like most people do. I did a lot of research online as well and the information I found aligned with everything in the pamphlets. I had to keep rereading and reaffirming myself.
I researched what bladder cancer is and what the treatments are, and BCG was the gold standard. I’m hearing more recently that there are alternative treatments, which is good because of the global shortage of BCG. In some areas of the country, I learned from other bladder cancer patients that they have not had access to BCG. I felt fortunate that it was available to me.
Having Support Around Me
My daughter Madeline took me to every appointment. She also stayed with me because when you come home, you have to lie down and rotate every 15 minutes until it’s time to go to the bathroom. She was my major support person.
I have met other bladder cancer patients who are much better with their social media than I was. When I started sharing, it was my way of dealing with it and processing it. Somebody who saw my TikTok video found me on Facebook. She reached out on Messenger to check in with me every Thursday. She was just diagnosed and hadn’t started her treatment yet, but she would ask how my treatment went and how I was doing.
I communicated with people through my videos, which helped me deal with what I was going through. I know people who have had breast cancer. I had a nephew who had childhood cancer. But I didn’t know anyone with bladder cancer.
How did I get this? Where did this come from? I thought if I started talking about it and put myself out there a little bit, other people would come forward or somebody would learn something. I wanted to get the word out.
The possibility of bladder removal was mentioned… We didn’t discuss it because he was very confident that removing the tumor and the BCG treatment were going to be effective for me.
Discussing Bladder Cancer Treatment Options
My urologist talked to me about treatment options immediately because I had to get the surgery scheduled ASAP. I asked if we could wait until the school year was over because I didn’t want to miss work. He said no and that it had to be done immediately.
He never gave me a stage, but I know that the two-centimeter tumor was a mix of high-grade and low-grade cancer, which he was surprised about. Based on his experience and from what he saw, he was pretty sure it was low-grade cancer.
There weren’t any options. It was going to be the transurethral resection of bladder tumor (TURBT) surgery and the BCG treatment. With the BCG, he explained what it is, what it’s used for in other countries, and what we use it for here in the US, which is to treat bladder cancer.
He talked about the BCG shortage and the possibility of it not being available. If we ran into that issue, then we would discuss other options. Thankfully, it was available and I got it every time I needed it.
The possibility of bladder removal was mentioned in all the literature that he gave. We didn’t discuss it because he was very confident that removing the tumor and the BCG treatment were going to be effective for me.
I didn’t even know about bladder removal. After I’d gone through all of this, I found out that I had an uncle who had bladder cancer and had his bladder removed. Nobody in the family ever knew until I started talking about what I was going through.
My cousin was pretty vague about it, but they were aggressive with what they did. They found out later that they didn’t have to do the bladder removal, but they went forward with it because he felt that he was getting rid of the potential recurrence. I’m not 100% sure what happened.
Different doctors have different approaches. My urologist was pretty conservative, but it’s also been very positive. Everything so far has been right for me.
I could have spoken up and said I didn’t want to do the treatment, but why would I? He’s the expert. This is what he does. He knows what’s best and I felt very confident in his skills and his decisions. I trusted him 100%.
I was in a very negative headspace… I couldn’t do anything. I didn’t have any energy. I didn’t feel like myself.
Why I Decided to Stop Maintenance Treatment
With BCG, I had to go in once a week for six weeks for the initial treatment. A lot of people have very minimal side effects from it. For me, I was down for anywhere from two to four days. I was wiped out and felt extremely fatigued. I’ve never experienced that before. That’s something he noted in my charts, which is that I didn’t respond favorably.
My initial round of BCG treatment was during the summer, so I was off work. I got a little bit of a break and then I went back for three weeks of maintenance treatment. Then I had another break and went back for another three weeks of maintenance treatment. By September 2024, I said I couldn’t do it anymore.
Between January and September, I was in a very negative headspace about everything. I was tired of being tired and of feeling like I couldn’t get out of bed every day. I couldn’t do anything. I didn’t have any energy. I didn’t feel like myself.
Cancer Research UK / Wikimedia Commons
Getting Intravesical Chemotherapy for the Recurrence
He had mentioned that if it recurs, I would probably have to do the chemotherapy into the bladder. But he didn’t say any drug names, just that it was chemotherapy. They do it through a catheter, the same way they do BCG, but from what I understand, it takes longer and you’re in the office longer because I think you have to wait there.
None of those things have been thoroughly discussed with me because I’m assuming it wasn’t necessary. But in December, I had intravesical chemotherapy. They inserted it through a catheter and clamped it. It’s held in for an hour and then they pull the catheter out. I’ve only had it one time.
The Side Effects of BCG Treatment I Experienced
My treatment day was always on a Thursday, so I had to miss that day of work and the following day. Because of the side effects, I couldn’t function. Sometimes, I would even miss work the following Monday, so that’s at least two to three days a week of work. Then I have to repeat it all the following week.
For me, I would get the chills and feel extremely fatigued. I’ve never experienced anything like that before. I was weak and tired. I couldn’t even hold my phone. I couldn’t get out of bed. I couldn’t do anything. I lay in bed and slept around the clock.
I don’t think bladder cancer removal should be an option unless it’s absolutely necessary.
At one point, I had COVID while having treatment at the same time. That was a rough three weeks. I was at the point where I couldn’t do it anymore. I physically couldn’t. I had what they called long COVID because it took a good six to eight months for me to get over all of the symptoms. Undergoing BCG treatment at the same time did not help me feel better.
The Advantages and Importance of Having Treatment Options
I think it’s good news. I do like that because there’s a worldwide shortage of BCG. Whether or not it’s the gold standard, if you can’t get it, you have to have alternatives. We’ll find out in time if the alternatives are better. All medical advances are good. Something that’s tried and true doesn’t always mean it’s the single best treatment because something better could come along.
Bladder cancer has a high recurrence rate, so there’s always a chance that it will come back. Knowing that there are advancements and new treatments, if it comes to that, then I can talk to my urologist and find out what’s available and what’s different.
I would want to consider the side effects and how they’re going to affect my life and my ability to work and function, and the effectiveness. In the grand scheme of things, of course I would like fewer side effects, but if something’s not going to be as effective, then I’m going to have to suck it up and go with what’s most effective.
I don’t think bladder cancer removal should be an option unless it’s absolutely necessary. Has there been multiple recurrences? Is the tumor invading the muscle now? Is it growing? I had non-muscle invasive bladder cancer, so why would I do that?
For me, that would be the extreme option in my situation. I want to continue to live and have a good quality of life, but I don’t think bladder cancer should be discussed as an option unless it’s a necessary course of treatment.
Doctors need to be open-minded and explore the new options coming out. Think about your patients: who they are, their age, their activity level, and their lifestyle. What do they do for a living? What do they do for recreation? Then think about the treatment options.
What treatment can improve the quality of life of my patient? What’s going to give them fewer difficulties? What’s going to interfere the most and what’s going to interfere the least? What treatment would be the least impactful in terms of side effects?
Don’t be afraid to speak up. Don’t be afraid to ask. You are your own best advocate. If you don’t speak up, who else will?
I want medical professionals to see us as human beings. Yes, we have this condition. Yes, you are the expert. But we also have a life outside of our condition.
How You Can Advocate for Yourself
I’ve been a paraprofessional in special education for over 30 years and I’ve had to advocate for students who can’t advocate for themselves. I’ve always been that way.
Ask questions. Do the research. In December, when I had the growth removed from my bladder and my doctor started talking about intravesical chemotherapy, I started spouting percentages back to him about how that was going to reduce the rate of recurrence. He was chuckling and I said, “I’m sorry, but I did my research because I wanted to know,” and he thought it was great. He was pretty impressed because I don’t think he expected it from me.
Don’t be afraid to speak up. Don’t be afraid to ask. You are your own best advocate. If you don’t speak up, who else will? You may have a caregiver, a spouse or a significant other, a parent or an adult child looking out for you, but we have to advocate for ourselves.
If you have questions, jot them down. Make a note in your phone or a notebook. Write your questions and concerns down, and bring them up. Talk to your nurses, to your doctor, and to everybody there. They’re a wealthy source of information. I don’t think that puts anybody in a negative light. We should be as informed as we can be.
How did I get this? I was never a smoker. I don’t work in the agricultural industry where I’m exposed to pesticides and chemicals, because he did ask me about that. But I have, unfortunately, put myself in situations where I’ve been exposed to second-hand smoke throughout my life.
Now I’m very cautious about my exposure. If I go out for a drink with friends, it’s in a nonsmoking bar. I won’t hang out in a garage or a shop where people are smoking. I’m limiting my exposure to reduce any risk because I take it very seriously.
Special thanks again to Johnson & Johnson for supporting our patient education program. The Patient Story retains full editorial control over all content.
