Kristen Opens Up About Crohn’s Disease, Her Ostomy, and Owning Her Story
Kristen was diagnosed with Crohn’s disease at just 12 years old. For anyone wondering what does Crohn’s disease look like, her story offers a vivid picture. Living with this chronic illness so young meant navigating growing pains and medical challenges simultaneously. She talks about how her world shifted from being a sports-loving, active kid to someone grappling with daily pain, blood in her stool, and emotional isolation. Her story is a heartfelt reminder that chronic illness changes more than your body — it affects how you relate to the world.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Throughout her teenage years, Kristen faced mounting symptoms and emotional struggles. By high school, her condition had worsened significantly. She bounced between treatments and doctors, often feeling let down. When she was in college, everything changed during an appointment when a doctor told her she needed an ostomy.
With her health deteriorating, Kristen agreed. That surgery, though overwhelming and unknown to her at the time, saved her life. She had no prior education about ostomy care and struggled initially, but she and her mom figured it out together.
Kristen is honest about the mental health toll of chronic illness, including medical PTSD and anxiety. She didn’t always advocate for herself, but she learned how to speak up. That shift empowered her. She realized that her voice mattered, especially when navigating multiple surgeries, including a total colectomy that made her ostomy permanent. While that decision was emotionally heavy, especially after being told it would be temporary, she eventually accepted it as necessary for her well-being.
Instead of letting shame or misinformation define her, Kristen started sharing her story online to educate and empower others. She uses Instagram as a blog, breaking stigmas around ostomy bags and showing the reality of life with one. She answers common questions about intimacy, product use, and body image. Kristen keeps it real but is always supportive, encouraging others to ask questions and never feel ashamed.
Body positivity plays a huge role in Kristen’s story. She’s chosen to love and appreciate her body for all it has endured. Even with an ostomy, she’s traveled the world, held full-time jobs, enjoys paddleboarding and rollerblading, and continues to thrive. She’s all about hope, mental health awareness, and creating inclusive spaces for people with invisible illnesses. Her message is clear: don’t be afraid to advocate for yourself, embrace your body, and know that even in the hardest moments, you’re not alone.
Watch Kristen’s video to find out more about her story:
What products she swears by for stoma care, and which ones she skips.
Her reaction when she found out that her ostomy, which she was initially told would be temporary, was going to be permanent.
What does Crohn’s disease look like and life with an ostomy, and how she lives fully and freely.
From hospital anxiety to medical PTSD, how Kristen’s mental health was impacted and how she’s healing.
How a single doctor changed Kristen’s entire life trajectory.
Name: Kristen F.
Age at Diagnosis:
12
Diagnosis:
Crohn’s Disease
Symptoms:
Fatigue
Abdominal cramps
Blood in stool
Loss of appetite
Frequent, painful bathroom visits
Perianal disease (open wound)
Mouth sores
Joint pain
Treatments:
Multiple medications
Surgeries: Temporary ostomy, total colectomy (permanent ostomy), Barbie butt surgery (proctectomy)
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 Brittany Chooses Quality of Life in Her Stage 4 Rhabdomyosarcoma Treatment Decisions
Brittany received a life-altering diagnosis of stage 4 rhabdomyosarcoma in July 2024. What started as a small lump on her jaw quickly escalated into a whirlwind of hospital visits, major surgeries, and tough decisions. But throughout it all, Brittany has remained grounded in her values, fiercely committed to preserving her mental health, self-worth, and autonomy.
When Brittany first noticed the lump, doctors thought it might be a cyst. But after it rapidly swelled during a biopsy, further testing confirmed it was cancer. That moment, she recalls, shattered her sense of normalcy. Getting that phone call was a deeply painful turning point. From there, she had to quickly learn how to advocate for herself.
Initially, Brittany’s first oncologist didn’t offer many choices. She sought a second opinion, and that’s when things began to shift. Despite being a young adult, Brittany learned that stage 4 rhabdomyosarcoma is often treated as a pediatric condition, which brought its own emotional weight. But the new oncologist gave her options, including fertility preservation, which was emotionally and physically taxing but important to her.
Brittany started chemotherapy and endured severe nausea, weight loss, and exhaustion, only to find out that the treatment wasn’t effective. In October, doctors removed the tumor surgically, replacing her jaw with titanium and using bone and muscle from her leg for reconstruction. She lost some facial movement in the process, a harsh reminder of the physical toll this diagnosis has taken.
Radiation therapy came next, damaging her salivary glands without improving her condition. Then the cancer spread to her lungs. After more chemo and even a clinical trial, Brittany made the decision that her treatments and their impact on daily life were stealing the quality of life she wanted. She bravely chose to stop her clinical trial treatments and take a more holistic approach, focusing on diet, lifestyle, and emotional healing. She is monitoring her lungs and scheduling a second surgery to work on her jaw.
Mental health has been the toughest part. Losing her physical strength, independence, and even pieces of her identity has been crushing at times. But Brittany has also grown immensely. With unwavering support from her boyfriend and his community, she’s learning to trust herself again, reclaiming her life on her own terms.
Brittany wants others to know they aren’t alone. Stage 4 rhabdomyosarcoma is terrifying, but fear doesn’t get to make the rules. You do. And she’s living proof that, even in the darkest hours, hope and strength can coexist.
Watch Brittany’s video to find out more about:
How Brittany found clarity and control after a devastating diagnosis
Why she has a titanium jaw
The emotional toll of stage 4 rhabdomyosarcoma
Why Brittany walked away from treatment to protect her quality of life
What it means to find your voice when the world tells you what to do
Name:
Brittany C.
Age at Diagnosis:
22
Diagnosis:
Rhabdomyosarcoma
Staging:
Stage 4
Symptom:
Small, sharp lump on the right side of the jaw
Treatments:
Surgeries: tumor removal & planned corrective jaw surgery
Chemotherapy
Radiation therapy
Clinical trial
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) ...
Jennifer’s Mental Strength Living with Stage 3 Kidney and Stage 4 Ovarian Cancer
In 2023, Jennifer was blindsided by a dual diagnosis of stage 3 kidney cancer and stage 4 ovarian cancer. Her life was turned upside down in an instant. But rather than let fear take over, she leaned into the present moment and shifted her mindset toward gratitude, growth, and healing.
Jennifer’s story began with a mysterious, rapidly growing abdominal swelling, which led her to urgent care, then the ER, and finally a whirlwind of scans and surgery. Despite being healthy, active, and symptom-free weeks earlier, Jennifer’s world changed overnight.
At first, Jennifer felt emotionally frozen. She was never explicitly told, “You have cancer,” but the weight of the diagnosis was undeniable. She didn’t even learn the exact staging until much later, intentionally avoiding medical reports to protect her mental well-being. Eventually, she discovered her stage 3 kidney cancer and stage 4 ovarian cancer diagnoses, but by then, her focus was already on healing.
One of the most striking parts of Jennifer’s story is how deeply isolation impacted her. With her daughter temporarily living with her father and no family close by, Jennifer went through nearly every step of surgery and chemotherapy alone. Yet, she also found a quiet strength in that solitude. It forced her to self-advocate, connect with supportive professionals like Dr. James Kendrick, and trust her own resilience.
Physically, the process was intense. Jennifer underwent major surgery that removed multiple organs, including her kidney, gallbladder, spleen, and reproductive system. Still, she recovered surprisingly well and chose to forgo heavy pain meds out of caution, relying mostly on acetaminophen and the support of her spiritual community.
Her mental and emotional recovery became just as important. She prioritized walking, listening to her body, and staying emotionally grounded.
Jennifer emphasizes the importance of staying present, advocating for yourself, and refusing to let a diagnosis define who you are. While there are days she still feels afraid, especially around scan times, her approach remains one of empowerment and emotional honesty.
The road ahead includes continued monitoring, a PARP inhibitor regimen, and lifelong surveillance. But what keeps her grounded is her daughter, her deepened gratitude, and her determination not to let fear take the wheel.
Jennifer’s advice to others? Don’t let yourself spiral. Let your mindset lead with curiosity, strength, and presence. You’re allowed to feel everything, but you’re also capable of more than you know.
Watch the video to find out more about Jennifer’s story:
What the worst part of her cancer experience was (it wasn’t surgery or chemo)
Why she refused to look at her medical records after diagnosis.
What helped her cope when the hospital room was quiet and fear was loud.
Why she couldn’t say the C-word and how she found her strength.
How she turned fear, isolation, and uncertainty into radical gratitude and growth.
Name:
Jennifer W.
Age at Diagnosis:
52
Diagnosis:
Kidney Cancer and Ovarian Cancer
Staging:
Stage 3 (Kidney Cancer) and Stage 4 (Ovarian 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.
Symptom: None; found the cancers during CAT scans for internal bleeding due to ulcers Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled) ...
Symptoms: Pressure and urgency of bowels, back pain Treatments: Chemoradiation (for rectal cancer), surgery (ileostomy, combined bowel and kidney surgery), immunotherapy (for kidney cancer)
Symptoms: Extreme bloating, pinching pain in right side of abdomen, extreme fatigue Treatments: Surgery (total hysterectomy), chemotherapy (Taxol once a week for 18 week, carboplatin every 3 weeks), concurrent clinical trial (Avastin) every 3 weeks ...
Healing Together: A Mother and Daughter Navigate High-Grade Bladder Cancer
The Many Faces of Bladder Cancer: Voices of Strength and Resilience
Subtle female bladder cancer symptoms—a faint trace of blood in the urine and nagging UTIs that didn’t respond to treatment—triggered 28-year-old Mary Beth’s diagnosis. Our series, The Many Faces of Bladder Cancer: Voices of Strength and Resilience, completes with a story of an adult daughter battling high-grade, non-muscle invasive bladder cancer (NMIBC) and her mom’s dedication as her caregiver. These powerful stories highlight the experiences and the challenges faced by bladder cancer patients and survivors. This series intends to foster hope, understanding, and a fresh outlook on dealing with this condition while raising bladder cancer awareness.
When Mary Beth was diagnosed with high-grade non-muscle invasive bladder cancer (NMIBC) at 28, the news came as a total shock, not only to her, but to her whole family.
It started when she noticed a little blood in her urine. At first, she thought it was a minor issue, like a urinary tract infection or her menstrual cycle. But when the bleeding returned intermittently despite treatment for UTI, she trusted her instincts and saw a urologist, even though the symptoms had mostly disappeared. [note: these are both signs of common ailments and female bladder cancer symptoms. It’s important to get checked}
That decision changed everything. A quick in-office procedure revealed tumors and after surgery to remove them, Mary Beth received the difficult diagnosis: high-grade non-muscle invasive bladder cancer. The initial consult felt cold and overwhelming, so she sought a second opinion at Vanderbilt University Medical Center, a move that made all the difference.
Throughout it all, her mom, Mary, stood by her side and offered steady emotional support. A retired nurse, Mary showed up for the weekly treatments, cooked meals, created calm, and just listened. Their relationship deepened as they moved through this life-changing experience together.
Mary Beth highlights the vital role caregivers play, not only in helping manage logistics and appointments but in creating a healing environment. Through her connection with Imerman Angels and the Bladder Cancer Advocacy Network, she became a mentor to other young women navigating high-grade bladder cancer. That sense of shared experience brought purpose and healing, allowing her to give back while continuing her recovery.
Thank you to Pfizer and Astellas for supporting our patient education program! The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Thank you to Imerman Angels for their partnership. Imerman Angels is here to provide comfort and understanding for all cancer fighters, survivors, previvors, and care partners through a personalized, one-on-one connection with someone who has been there.
I noticed blood in my urine… there wasn’t that much blood, so I didn’t think much of it.
Mary Beth
Introduction
Mary Beth: I was diagnosed with bladder cancer in 2014. I’m a mom of two boys. We live in Danville, Kentucky. My friends and family would describe me as a social, outgoing person who loves to make new connections. I’m very curious and a lifelong learner, interested in expanding and exploring the world around me in any way I can.
Mary: I’m Mary Beth’s mom. My friends and family would describe me as curious, creative, social, and fun-loving.
Red Flags I Noticed Before My Diagnosis
Mary Beth: In the fall of 2013, I noticed blood in my urine. I was with my mom when I first noticed it. We were at a family member’s wedding at that time. I thought it was weird, but we were busy and there wasn’t that much blood, so I didn’t think much of it. I thought I had a urinary tract infection (UTI) or was starting my menstrual cycle. I was experiencing it intermittently.
A few months passed and I noticed that it wasn’t going away, even though I had been treated for a UTI. I decided to make an appointment with a urologist to have it checked. I almost didn’t go because I stopped seeing the blood at all. My urine was a teeny bit pink, so it wasn’t alarming. I almost canceled my appointment because it was gone that week, but it was a good thing I didn’t.
I lived in Nashville at the time. I went to see the urologist and he scoped my bladder in his office. He could see that I had tumors in there and wanted to have them removed within a few days. I proceeded to have an outpatient laparoscopic surgery to remove the tumors he saw.
She’s awfully young… She didn’t fit the medical picture that we were familiar with.
Mary
Getting the Official Diagnosis
Mary Beth: A few days later, I received the diagnosis from his office. They told my parents first because they wanted to know what was going on. My parents told me that I had cancer. That was a hard day.
At the private practice I went to, they did a CT scan on the same day I got the scope done. They also did a test that showed a lot of microscopic blood in my urine.
There was a waiting period after the biopsy. That was in February 2014. I remember the day. It was storming outside, which was unusual for February.
Mary: We were in Danville and she was in Nashville. This happened through a phone call. Her dad is a retired physician and I’m a retired nurse, so we have a medical background. He primarily got the report. If I remember correctly, he talked to her and I talked to her after that.
We were shocked, to say the least, because there’s no cancer in our families. She’s awfully young and in our experience, bladder cancer typically is for a heavy smoker and usually a middle-aged to old age man. She didn’t fit the medical picture that we were familiar with.
I knew she was very upset. I tried to calm her as best I could on the phone, but that doesn’t help when you’re in shock at something that you were not expecting at all. We all felt like it was an emotional blow.
Her dad and I felt that treatments were the answer and that this could be taken care of. At that time, we were trying to help her cope emotionally, which wasn’t easy because we weren’t in the same town.
All I can remember from that initial consult was the percentages of my cancer getting worse or coming back, which was overwhelming at the time.
Mary Beth
Hearing the News from My Parents
Mary Beth: I was glad that they talked to me about it. It would have been harder if I had gotten the news in the doctor’s office. I felt grateful that I got the news that way because it was softer.
I was thinking, “How did this happen? What could have caused this? How bad was this going to be? What do I need to do next?” I was shocked. I couldn’t believe that it was me that they were talking about. It felt like an out-of-body experience.
Discussing My Treatment Options
Mary Beth: It was a pretty intense appointment. He talked about how I could do the first line of treatment, which would be BCG immunotherapy. He also talked about bladder removal (cystectomy). He talked about how my bladder cancer was high grade and the type to recur, and how the odds of it coming back were high. I felt bladder removal was more on his mind for me, so that I wouldn’t have to keep dealing with it. I also think there were other chemotherapies I could mix with that.
There were a few different options, but all I can remember from that initial consult was the percentages of my cancer getting worse or coming back, which was overwhelming at the time. Truthfully, it wasn’t warm and compassionate. I decided to get a second opinion.
We felt she was in the best hands. You could tell that he cared about her and was doing all he could to help her.
Mary
Getting a Second Opinion
Mary Beth: I got a second opinion with Dr. Sam Chang and his team at Vanderbilt University Medical Center. He was awesome from the beginning. He talked about a long continuum of what could happen, from BCG to bladder removal. He talked about how we could start with the basics and see if that works. He was very good about bringing it back to the next step. It wasn’t as overwhelming. He was also a very warm, personable, and compassionate man.
I decided to do BCG at Vanderbilt. I immediately switched my care and records over to Dr. Chang. I immediately felt better because there was a shift in the delivery, energy, and research by the medical team at Vanderbilt.
He was using cutting-edge technology for bladder cancer at that time, which was called Blue Light Cystoscopy (BLC®) with Cysview®. He could perform the procedures using an agent that lights up the cancer cells, almost like a black light, so he could see them more clearly and remove them more easily compared to a normal white light procedure, which is what most urologists offer.
My Mom’s Role in the Treatment Decision-Making Process
Mary: As a surgeon himself, my husband took the reins with her at the appointments or at least to hear about her options. He took care of the medical aspect of what they were proposing. I was the emotional support and went with her to treatments because he was still practicing at that time.
I was able to stay in Nashville and accompany her to the clinic and help with anything we could do to help at home, so that she could take it easy. That was my main function and where I could help the most, whereas he was more aware of the technical side.
We liked Dr. Chang so much. We felt she was in the best hands. You could tell that he cared about her and was doing all he could to help her, which helped her get through all this.
By October, he didn’t find any cancer. There was no evidence of disease.
Mary Beth
My Treatment Regimen
Mary Beth: After I was diagnosed in February 2014, I had another transurethral resection of bladder tumor (TURBT) in March. Dr. Chang waited a month or so to let my bladder calm down. I did the BCG treatment, which was six weeks of weekly treatment. Afterward, he did another TURBT to check. I waited a longer period and then had three more treatments.
Then I was moved to maintenance treatment. He saw a little bit of cancer remaining after my first six-week treatment, so he looked again and took out a little bit more that he could see. I went on maintenance treatment after those three weeks, waited, did another TURBT, and by October, he didn’t find any cancer. There was no evidence of disease. I consider October 2014 as when I was cancer-free, but I continued to do maintenance.
I had another three-week round and another TURBT in January 2015. It was still clear. I did more maintenance treatment and had my last one in the spring of 2015. We were monitoring and did imaging every three months and then progressed to every six months. In 2016, he said I was good. We wanted to have children at the time and he gave me the green light.
From the diagnosis to the end of treatment was a two-year period. I didn’t have to do chemo. With bladder cancer treatment, there are different combinations they can do, but the BCG worked, which was the least toxic. It left my system when I was done. It was not a fertility concern, which was great.
The Importance of Having My Mom with Me During Treatment
Mary Beth: My treatments were on Friday afternoons. I worked a full-time job and would take Friday afternoons off to get the bladder installations in the clinic.
My mom would keep me company. I had to wait a long time to go in and get the treatment. Then I had to wait a little more, having it in my bladder, before I could leave. Sometimes my mom drove me, but other times she was there to accompany me then we would go back to my house.
I needed to hold the BCG in my bladder for two hours for it to work, which could be challenging, especially when you have sensitivity. It can be very uncomfortable. After two hours, I would go to the bathroom and let the BCG go.
I would have a pretty sensitive bladder for 24 to 48 hours. There was a lot of stinging, burning, and a frequent urge to urinate. I would try to take it easy and have fun, like watching TV, eating good food, and trying to enjoy myself as best I could to distract myself from it. We would usually do something fun that weekend, but those were six weeks in a row.
By my fourth or fifth treatment, I felt like I had the flu. I felt tired and achy, as if I had a low-grade fever, but not to the point where I couldn’t go to work or do things. I just had to rest a lot more.
At the time, I was 28, so I wanted to be active. I’m a pretty energetic person, but I was forced to take it easy on the weekends. My mom was good about hanging out with me and doing low-key activities.
I would let her energy and desires drive whatever we would do or not do. I kept her comfortable and distracted.
Mary
How My Mom Felt Seeing Me Go Through Cancer Treatment
Mary: Being a nurse, a clinic environment and patient care are very familiar, so it wasn’t as intimidating or frightening as it might be for a lay person. When we would get back to her house, I would make some food and we would watch movies. We might walk a little bit in her neighborhood — she had a beautiful neighborhood. But mainly, we hang out. I would let her energy and desires drive whatever we would do or not do. I kept her comfortable and distracted.
We love good old movies, so we watched movies and spent time together. Simply being there made a big difference to us. When she didn’t feel like doing anything, we let her rest, and I would cook, clean, or do whatever needed to be done.
Discovering Imerman Angels
Mary Beth: When I was diagnosed in 2014, especially that spring and summer, it was difficult to feel positive because I was worried and frightened. It was also hard because my family and friends were worried about me. I decided to join a walk for bladder cancer awareness in Lexington, Kentucky, with a lot of my family members and friends, and it was great.
Nashville doesn’t have a bladder cancer walk, and I thought we should because we have a huge medical community and great urology programs. I worked with the Bladder Cancer Advocacy Network (BCAN) to start the walk in Nashville in 2015. At this point, I was through the worst of my diagnosis and treatments.
Helping other young women who are dealing with this diagnosis helped me heal as well.
Mary Beth
It put me in an advocacy mindset about sharing my story and helping others. I found ways to connect as a patient advocate. Imerman Angels came up immediately when I was searching for that type of work and outlet for myself. Helping other young women who are dealing with this diagnosis helped me heal as well. I connected with them.
Every time I had a phone call or matched with another patient, I felt great being able to answer questions, share my story, and help them. I did the same thing with BCAN, which has a patient advocacy program. If there are others, I’m all about signing up as a mentor and a person to chat, but Imerman Angels has always been very professional and on top of how they match and follow up. It’s been a good experience for me for sure.
What My Mom Didn’t Know While I Was Going Through Cancer Treatment
Mary Beth: Sometimes, I didn’t show how scared I was. I expressed how grateful I was that she came, but I want to reinforce that. It was a huge time commitment on her part to drive three hours to see me and spend time with me. They were even able to get a place in my neighborhood so they could be close by. To be spending so much of her time away from her other responsibilities was a major time commitment and I appreciated that.
I needed the caretaking, but I also needed a lot of positive energy. My mom is very upbeat. She tries to help with peace, hope, and faith. She’s a very spiritual person, and the spirituality that she brought and the conversations that we had during that time helped me get through. It was impactful to me, so I started my own journey.
Mary: I was sure she was scared, but she was brave. It’s very devastating emotionally and physically, but I felt like she would get through it and be cured of it. I also knew that if looked at correctly, this could teach her a lot about her inner strength and spiritual strength. I felt like we had the same goal. Whatever she shared with me was something for me to learn from, too.
We connected on a deeper level… It’s been very valuable for us to know each other deeply through a crisis where we came together.
Mary
Cancer’s Impact on Our Relationship
Mary Beth: The experience brought us closer. I was going through it as an adult, but I also needed some guidance. We were not communicating as frequently or spending as much time together, but that time helped us bond more. One of the bigger things out of the whole experience was having a genuine time to connect.
Mary: I would agree. Her brother married and moved away, so I’m not involved in his life frequently. When she moved to Nashville, I thought it would be the same pattern. Your children have flown the coop and are setting up their nests, and you’re visiting and enjoying being with them.
This was the call to come to her aid. Since she went away to college and got married, she has never lived with me again. It was a time for us to get to know each other as women, not just as mother and daughter. As time goes by, I’m going to need some help from her.
We connected on a deeper level. I don’t think that would have occurred if she continued to live in another state. It’s been very valuable for us to know each other deeply through a crisis where we came together.
My Advice to Fellow Bladder Cancer Patients
Mary Beth: The biggest thing that I can say is to advocate for yourself. When you know something’s not right, follow your gut instinct and persist through the medical system, though it can be challenging and confusing. Seek out other opinions. You don’t have to do this one certain way. Be open to other modes of treatment.
Expand your sense of care to family and friends who want to be there for you. Don’t feel like you have to be strong all the time. Allow yourself to feel vulnerable. You can feel scared and sad. Getting the help that you need to move through those feelings and finding the pathway that fits you best is a process.
Don’t feel like you have to be strong all the time. Allow yourself to feel vulnerable.
Mary Beth
At that time, I was in a place where I could explore different avenues to help me on all levels: mind, body, and spirit. I felt very fortunate. I encourage anyone going through this to be open to asking others who’ve been through it themselves to know that they’re not alone.
My Mom’s Advice to Fellow Caregivers
Mary: Listen to your family member or friend because they’ll tell you what they need, even though sometimes they might not tell you directly. The doctors will give instructions post-treatment, but being with somebody who can care for you is powerful and healing.
Be there for them. Don’t take away their autonomy of how they want to go through this. Be a sounding board. Your fear will probably make you want to fix them quickly.
The lessons are there for both of you. If you can meet them where they are and go through it with them, the experience will have many blessings, even though it doesn’t seem like it on the outside. It could be the best thing.
Be there for them. Don’t take away their autonomy of how they want to go through this.
Mary
Mary Beth: I remember participating in these walks, which were positive experiences and a focus for me for those two years that I was in the thick of it. I could gather my family and friends, and do something positive. It shifted the energy and focus from me to a bigger picture, being a part of a larger community and a larger cause.
It took away a lot of focus on what might be going on with me. I didn’t do it as an escape but more to shift the energy. It worked because my parents were involved. We had family and friends come from out of town. It helps to find the larger connection with others during a difficult time. You’re not alone. You can be connected through challenge.
Special thanks again to Pfizer and Astellas for supporting our patient education program. The Patient Story retains full editorial control over all content.
Thank you to Imerman Angels for their partnership. Imerman Angels is here to provide comfort and understanding for all cancer fighters, survivors, previvors, and care partners through a personalized, one-on-one connection with someone who has been there.
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. ...
In this expert-led discussion, MD Anderson’s Dr. Ashish Kamat breaks down the latest in research, emerging therapies, and what patients and care partners need to know now to make informed treatment decisions...
Rectal Cancer at 31: 20 Years Later – What James Wishes More People Knew
James was just 31 when he was diagnosed with stage 3 rectal cancer (stage 3C/4) in 2003. His story is powerful, emotional, and deeply human, full of hard lessons, honest reflections, and resilience in the face of change. Before jumping into the challenges he faced and continues to face, know that we are talking to him 20 years after his diagnosis. Keep that fact with you as you take in his story. Through his experience, James came out the other side with a new understanding of life, health, and identity.
For years, James experienced rectal bleeding, which was brushed off as hemorrhoids. Despite reassurances from his primary care doctor and even a gastroenterologist, he trusted his instincts and pushed for a colonoscopy. That test revealed a tumor, and in that moment, James knew. “I have rectal cancer,” he told the nurse, who broke into tears. That moment set the tone for what would become a life-altering experience grounded in self-advocacy, awareness, and emotional strength.
The treatment for rectal cancer was intense. Chemotherapy, radiation, multiple surgeries, and eventually a permanent colostomy were part of the plan. Initially, doctors tried to preserve rectal function, but complications led James to choose the colostomy to improve his quality of life. It wasn’t an easy decision, but for him, it was the right one. He emphasizes that a colostomy isn’t something to fear; it’s manageable and can absolutely be life-saving.
James speaks openly about the emotional toll rectal cancer took on him. It stripped away his sense of self and forced him to come to terms with a “new normal.” He faced physical challenges like chronic pain, fatigue, and even had to teach himself to self-catheterize. But alongside all that, he also faced a mental and emotional reckoning: accepting help, learning patience, and embracing vulnerability.
What sets James apart is his focus on empowerment and education. He wants others to listen to their bodies, speak up when something feels wrong, and not be afraid to advocate for themselves. For James, survivorship isn’t about going back to how things were. It’s about adapting, growing, and finding meaning in new experiences, even when life looks completely different.
Now, more than 20 years out with no recurrence of rectal cancer, James still lives with side effects of treatment, but doesn’t let them define him. He shares his experience to let others know they’re not alone. You can live a full, meaningful life with rectal cancer. It may look different, but it’s still yours.
Watch James’ video to find out more about his story:
James knew something was wrong long before doctors did and he didn’t stay silent.
From possible hemorrhoids to a life-saving colostomy, James shares it all.
Life after rectal cancer isn’t easy, but James proves it’s possible and meaningful.
Discover why James calls his colostomy both difficult and a relief.
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.
What Myelofibrosis Taught Demetria About Showing Up for Herself
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
In a heartfelt and powerful conversation, Demetria, a resilient businesswoman, opens up about her experience with myelofibrosis, a rare blood cancer, and how it reshaped her life in the most unexpected ways.
From the outside, she was the glue — supportive, successful, always encouraging others. But behind the scenes, a wave of unrelenting fatigue had crept into her life, something deeper than just being “tired.” It took persistence and self-advocacy for her concerns to be taken seriously by her doctor, and soon, she found herself face-to-face with an oncologist and an unfamiliar word: myeloproliferative neoplasm.
Initially diagnosed with essential thrombocythemia (ET) due to the JAK2 mutation, she navigated treatment with courage, resilience, and a lot of unanswered questions. Her mental strength carried her through the confusion, and her spiritual grounding gave her clarity when facts didn’t. Despite feeling isolated in her diagnosis, she remained inquisitive and proactive, seeking second opinions and trusting her instincts.
As her condition progressed into myelofibrosis, the reality hit harder. Her body stopped producing blood cells. She found herself in complete bone marrow failure and urgently needed a bone marrow transplant. What followed was a deeply emotional and spiritual experience marked by weekly blood transfusions, a life-changing phone call from a donor registry, and a renewed sense of purpose.
What stands out is not just her diagnosis, but the quiet power with which she faced it. She never let fear define her. Instead, she leaned into her faith, stayed curious, and used the waiting period to advocate for more African Americans to join the donor registry — a crucial step, as she learned how underrepresented Black patients are in the system.
Demetria’s story isn’t just about myelofibrosis; it’s about mental wellness, feeling seen, and finding peace even in uncertainty. She openly shares the importance of prioritizing health, listening to your body, and staying grounded in what truly matters — family, purpose, and presence.
Now thriving post-transplant, she’s working on launching a nonprofit that supports awareness and self-care for entrepreneurs and communities impacted by myeloproliferative neoplasms. She’s proof that healing is as much about inner peace and support systems as it is about medical treatment.
Watch Demetria’s video to find out more about her story:
What happened when a mystery illness was something she never expected?
How she turned a cancer diagnosis into a platform for life-saving advocacy.
From weekly transfusions to spiritual clarity, how she shifted her perspective.
Learn how one woman brought her daughter into her healing process in the most touching way.
Why she says “feeling good” means more than “looking good” and how she got there.
Name: Demetria J.
Age at Diagnosis:
41
Diagnosis:
Essential thrombocythemia (ET), later progressing to myelofibrosis (MF)
Mutation:
JAK2
Symptoms:
Extreme fatigue
Stomach pain (later identified as due to an enlarged spleen)
Dizziness
Shortness of breath
Treatments:
Spleen-shrinking medication
Regular blood transfusions
Bone marrow transplant
Thank you to Karyopharm Therapeutics 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 treatment decisions.
I started experiencing extreme fatigue. When I would get home… I wanted to go straight to bed.
Introduction
Those closest to me would probably say that I’m their biggest cheerleader. I have been gifted with the ability to encourage people and give them a little extra boost when they may feel like they can’t do something or are going through a certain situation. I have a unique ability to give a different perspective on things. A lot of times, I’ve heard people even describe me as a silent strength. Even though I can speak to people, I’m not very vocal. I may not talk a lot, but when I do talk, I use my words in a meaningful way.
Red Flags I Noticed Before My Diagnosis
I have been a business owner for over 15 years. I was also working with an organization that works with kids, trying to get them into high school. On top of those, I was doing a lot of traveling. I was busy all the time.
I started experiencing extreme fatigue. When I would get home, I would normally tend to our daughter, who was very young at the time. I would fix dinner and hang out around the house. Instead, I wanted to go straight to bed, and that’s why I knew this was a different kind of tired. I didn’t even have the energy to do anything except go straight to bed.
When it was time for my routine check-up with my physician, I mentioned to him that I’ve been tired. At first, he brushed it off. He said, “Well, you do a lot.” I told him it was a different kind of tired. He said, “We’ll run some extra blood work to check your nutrient levels. Maybe you’re low in B12 or something,” but that was not the case.
After a couple of days, while I was driving, the doctor’s office called. The nurse said, “Your blood work came back, and your doctor is sending you to an oncologist.” I said, “Wait. Hold on. Let me pull over.”
I pulled over into a parking lot and said, “Did I hear you correctly? You’re referring me to an oncologist?” She said yes. I asked why. She said, “Your platelet counts were extremely high. They were in the millions.” I asked her what that meant. She said, “We’re not quite sure. That’s why he’s referring you to an oncologist.” The journey began from there.
I took the medication for about a year and a half, and started feeling much better, to the point where my numbers started leveling out.
Meeting My First Oncologist
When I got home, I went online, like most people do. I searched, “high platelets, what does that mean?” It gave me different things. The first thing most oncologists want to do is a bone marrow biopsy to figure out what’s going on in the marrow. She said, “I think this is what it is.”
One of the things that was a little alarming for me at that time was when she said, “You’re fairly young and most of the time, we don’t see this present in people of your age.” In that moment, I didn’t feel like there was more that she was willing to do.
One of the things she asked was, “Do you and your husband still want to potentially have another child?” I said yes because at that time, I was in my mid-30s. I didn’t feel like she wanted to explore any other options because I was a unique case.
Getting a Second Opinion
I ended up at Emory Hospital in Atlanta. At the time, the oncologist there felt as if I would do better on another medication that was fairly new to the oncology world. It had recently come out of a clinical trial, but it was showing very positive results. He said, “I think you would fare better on this,” so that’s what I did.
I took the medication for about a year and a half, and started feeling much better, to the point where my numbers started leveling out. The platelet counts had gone down to the normal range. That was one of the things that he was hoping for.
The clinical trial findings had shown that some individuals were able to get off the medication and their bodies were able to sustain themselves, and that’s where I thought I had ultimately landed until the next journey began.
No one could give me an answer. I was feeling frustrated because I didn’t understand how this could happen.
My Reaction to the Essential Thrombocythemia Diagnosis
When I was young, my mother had leukemia. She was with me at the doctor’s appointment that day, and our initial thought process was whether it was hereditary and potentially came from her. They said it typically wasn’t how it works. I found out that there was a JAK2 mutation in my blood that was causing the essential thrombocythemia (ET) to happen.
I had a lot of questions. I was very inquisitive. How does this happen? How do you get the mutation? It was a little frustrating because I couldn’t get any direct answers. Ultimately, they landed on I was born with this mutation.
If I were born with this mutation, why did it express itself at this point in my life? What made it express itself? If it’s been in my DNA this entire time, why did it express itself at this time? No one could give me an answer. I was feeling frustrated because I didn’t understand how this could happen.
Educating Myself on Treatment Options
In your mind, you just want to survive and get better. I didn’t lean too heavily into what the complications could be. I know that if I read too much into all of those things, it could create a roadblock for me because my mind would shift to these other things, so I didn’t want to go down that road.
Our insurance wouldn’t pay for the medication. Thankfully, we found an organization that provided financial assistance. The medication was over $1,000 a month, but even so, my husband and I were prepared to do whatever we needed to do to afford it so that it could improve my quality of life.
Our insurance wouldn’t pay for the medication… my husband and I were prepared to do whatever we needed to do to afford it so that it could improve my quality of life.
Possibility of Disease Progression
There wasn’t any tracking, but I was made aware that there could potentially be a progression of the disease. Once I was a year out and feeling well, everything seemed okay. Honestly, it never even crossed my mind that something worse could come down the pipe. I went back to living life and jumping into entrepreneurship and my family. I wasn’t looking back.
When I Started Feeling Symptoms Again
Once again, fatigue was the biggest presenting symptom. I also experienced stomach pain. Looking back, that was my enlarged spleen that was causing the pain in my stomach, but I thought they were two isolated things. Neither one of them meant that I had cancer. I thought they were independent of each other, so I kept going on and diagnosing myself of what I thought was going on until it became too much to bear.
Feeling Worsening Symptoms
I developed dizziness. About two weeks before the actual diagnosis, I started getting dizzy. Two main events made me think that something was going on. My husband and I were at a track and field day with our daughter. We had to walk quite a distance from the parking lot to the bleachers, and I was struggling with my breathing and dizziness.
We were towards the end of the year, so I wanted to buy my daughter’s teacher a thank-you gift. I was in line at the store and felt like I was going to pass out. I told the cashier I was going to leave my stuff and go to the car for a minute. I took dimenhydrinate because I thought I was going to have vertigo. I was sitting in the car for about 10 minutes and thought I’d try again.
I went back into the store and I seemed to be okay. I get back in line then I start to feel it again. I jokingly said, “I’m in a big hurry. I’m not trying to rush you, but can we speed it up?” She was extremely nice; she was talking and taking her time, but I felt like I was about to pass out.
I got back in the car, called my husband, and told him I might have to go to a walk-in clinic or somewhere the following day because I was still getting dizzy.
‘All your blood levels are dangerously low. I don’t even know how you’re functioning.’
Later on, I had a sharp pain in my stomach again, so I thought something was up. The next morning, I get up to find out what time the clinic opens because I want to be the first person in.
That morning, I wasn’t dealing with any dizziness. It was the pain in the stomach that was presenting more that day. I thought I might have bacteria in my stomach. I go to the clinic and explain the symptoms to the doctor. She said, “We’ll test you for H. pylori and make sure you don’t have that, but let’s run some blood work to rule out anything,” which was the best thing that she could have ever done for me.
She called me the next day and said, “Your labs came back and all your blood levels are dangerously low. I don’t even know how you’re functioning. You need to go to the emergency room right now. They’re probably going to give you a blood transfusion. I’m emailing you your lab work so you can show it when you get there. They will figure out what’s going on because I’m not quite sure, but something’s going on.”
Going to the Emergency Room
My husband brought me to the ER and my mom drove up from Georgia to be with me. Thankfully, they were very attentive when I showed them the lab work that the doctor emailed me and they immediately took me back. They initially went down the track of gastroenterology. They said, “We’re going to draw some more blood to see for ourselves.”
After the lab work, the doctor came back in and blatantly said, “No, this is cancer.” My mom, my husband, and I were looking at each other. One of the oncologists whom I previously saw was on call at the ER that day. When the doctor on call was saying that this was cancer, she said his name and when I told her I knew him, she came to get him. He comes in, remembers me, and takes over my care completely.
Finding Out I Have Myelofibrosis
He transferred me to another hospital that he felt would be able to serve me better. He ordered the bone marrow biopsy. He came back and said, “It’s myelofibrosis.” He immediately put me on the national donor list. He informed me that he feels like I need to have a bone marrow transplant to live.
I was in complete bone marrow failure at that point. My body was not making any blood cells at all and that’s why my blood levels were so dangerously low. Every day, old cells die off and your body generates new cells, but mine were dying off and nothing was being generated. Until they found me a donor, I was going to have regular blood transfusions to keep my body going.
They noticed how calm I was. There’s no other way to describe it except for the peace of God.
My Reaction to a New Cancer Diagnosis
Surprisingly, I was very calm. I ended up staying in the hospital for five days after going to the ER. I called family and close friends, and when they came to visit, they noticed how calm I was. There’s no other way to describe it except for the peace of God. I had a peace that I only know came from Him because I knew that it was serious, but it didn’t rattle me. It didn’t make me feel hopeless. I felt that I’ve been through ET, so I can make it through this one.
One night, when I was in the hospital by myself, I was lying in bed and talking to God. I was saying, “Okay, we’re going through this,” and I feel Him say to me, “You’re not going to die. It’s bigger than you.” I didn’t quite understand what it meant in that moment, but it gave me something to hold on to. Even at times when I felt like I was going to die, I said, “Nope. He said I’m not going to die, so I’m not. It’s going to be okay.”
My Thoughts on Needing a Bone Marrow Transplant
When they said they were putting me on the national donor list, I thought it was great until I had a visit with the transplant surgeon. He said, “We are very hopeful that you can get a donor, but African Americans make up the lowest percentage on the national registry. Because of that, your chance of finding a donor is a longer stretch. It could potentially be two to three years because we don’t have enough pool of people to pull from.”
That stopped me in my tracks because you have this hope that you can get a donor, but you find out the chances are very slim based on the statistics. I asked him, “What can I do to help? How do we get more African Americans or Blacks to sign up to get on the registry?” He said, “Be The Match. You would probably have to contact them,” and that’s exactly what we did.
We contacted them to figure out how to hold donation drives to increase the number of individuals on the registry. That became part of my focus. Honestly, I think that helped to keep me from thinking about the other things because my focus shifted. How can we increase the number of African Americans on the registry so that if another person has this diagnosis, they don’t have to face the fact that there are only 29% of people to pull from?
To hear that they found me a donor was unbelievable.
Finding a Match
By God’s grace, two and a half months later, I received a phone call. My husband and I were sitting on the couch. You know how sometimes you don’t answer unknown numbers because you think it’s spam? By this time, I’m answering every phone call regardless of whether I know the number or not, because I don’t know who it could be.
An unknown number called and I answered it. She confirmed that it was me on the phone and said, “I think we have potentially found a donor for you.” My mouth flew open. I put her on speakerphone so my husband could hear her.
It was a surreal moment. In my head, I had two to three years. To hear that they found me a donor was unbelievable.
Undergoing Regular Blood Transfusions
A year prior, my oncologist had moved to where I lived, so he knew all of the transplant surgeons and was in direct contact with them. They were walking him through my protocol. They immediately wanted to shrink my spleen, so they put me on a medication to help shrink the spleen and ease some of the symptoms from myelofibrosis. That was a big help in addition to going every 7 to 10 days for transfusions.
The transfusions improved my quality of life. Typically, the day after a transfusion, I would wake up and feel better. Their goal was to keep my hemoglobin level above seven, which is still low, but I felt wonderful coming from a four.
When I would go see the oncologist, they would check my blood levels and send me to have a transfusion. I pretty much knew that I was going to get a transfusion every week. I made friends with all the staff. It wasn’t as sad as people may think because even though my life revolved around being in a doctor’s office or a hospital every week, I still got to interact with people. This was my new normal.
We were praying that my donor wouldn’t think it’s too much and back out.
Preparing Myself for the Bone Marrow Transplant
My husband and I prayed for my donor because they say potential until you get close enough to where everything is solidified. Potential means that they’ve located the donor and reached out to them, and they agreed, but there are several more steps that the donor has to go through.
I didn’t know that all of the pre-testing that I went through, my donor also went through, so I thought that the donor was a selfless human being to go through all of that for a stranger. We were praying that my donor wouldn’t think it’s too much and back out.
Once we got close enough to the point where it’s final and I’m having the transplant, my hair was extremely long. Our daughter was 10 years old at the time, so she didn’t fully understand everything because we wanted to shield her from some of the details. I told her, “Mommy’s going to lose her hair.” She was saddened by that because she loved to play with my hair.
I thought, “How do I bring her into a part of this?” I allowed her to cut my hair before going to have the transplant. We recorded it and shared it on social media. It had a huge number of views and shares. I began to understand what God meant when He said it was bigger than me. I met so many incredible people through social media.
I brought her into it so that she could feel like she was a part of it. I knew that I was going to lose my hair. It softened the blow a little bit to see a shorter amount leave your head than long strands. Mentally, that’s how I prepared myself for losing all my hair. Outside of that, I decided I have to be present every day and show up every day ready for the journey.
My experience taught me to reprioritize my life… If you don’t take care of yourself, then nothing else can thrive.
My Life After Transplant
My experience taught me to reprioritize my life. I was a busy bee. I was everywhere doing everything. All good stuff, but sometimes, something like this stops you in your tracks. It completely slowed me down. I had time to reflect on what things are most important.
When you’re lying in bed, you’re not thinking about customers; you’re thinking about your family and your loved ones. They’re most important to me. It redefined how I show up and what matters to me the most. How am I going to live my life from this point forward? It changed everything.
It’s so funny because when I see people out, they say, “You look so good!” I always say, “Thank you, but I feel so good.” Feeling good is better than looking good. They always laugh because I appreciate that I look good, but I appreciate most that I feel good.
I didn’t even know that this is how I was supposed to feel because it became a normal feeling, the way I previously felt. I thought that what it was like as a busy person, not understanding fully that it wasn’t having a good quality of life, even though externally you had a lot of good things. I succumbed to the fact that that’s how you feel when you’re busy. I’m amazed because I didn’t even know that this is how I was supposed to feel.
Educating People About Myeloproliferative Neoplasms (MPNs)
I’m hoping to create a nonprofit where I can continue some of the efforts that we were doing. I paused the transplant to regain my health and get things in order.
Now I feel like I’m at a place where I can embark on something a little bit bigger. I do think it’s important, especially around entrepreneurship and business owners. A lot of us wear so many hats that tons of us do exactly what I did. We keep going. We keep showing up for our businesses and our customers, but we don’t necessarily show up for ourselves.
I want to work on how that looks, where I can encourage business owners and entrepreneurs. I understand the hustle. I understand that a lot of times, that’s what it takes to get your business off the ground. But you are the most valuable person in that thing. If you don’t take care of yourself, then nothing else can thrive.
Take a step back and look at what you’re doing for yourself.
My Advice About Paying Attention to Your Body
It’s not selfish to take care of yourself. The first law of nature is self-preservation, which we violate all the time. We put other things and other people ahead of ourselves. If we aren’t well, then we can’t be well to anybody else.
When you shift that perspective about life and how you show up, then you will prioritize your health. You will prioritize being good to yourself. We’re all guilty of that to some degree, but I hope that in sharing my story, it would inspire people to look beyond what it is that you’re doing for others, take a step back, and look at what you’re doing for yourself.
A lot of times, when I wanted to go to doctor appointments and do certain things, I would say, “Oh, but my clients are going to be so disappointed if I have to cancel them.” If I’m not here, that’s going to be more devastating than me having to cancel on her. Look at life a little differently. Are you taking care of yourself? Take care of yourself first.
My Advice About the Mental and Emotional Side of a Cancer Diagnosis
You have to remain hopeful. Hope is what you can hold on to when everything else feels like it’s slipping through your fingers. Hope anchors you to the possibility of living on the other side of this thing. When you lose hope, then you have nothing. Hope is the foundation.
People say, “How do you have hope when it looks so daunting?” I had to shift to gratefulness. Gratefulness was another key piece that helped me to remain hopeful.
Nobody’s grateful for a diagnosis, but I was grateful that there was a solution at hand. I was grateful that there were people who were willing to do whatever they needed to do to help me on my journey. When you begin to be grateful amid the storm, that’s where hope can start to shine its head a little bit.
It could have been a lot worse. I don’t know how worse it could get, but it could have been. Hopefulness is what anchors you to the possibility of more.
Stress can be a silent killer as well. Stress probably undergirds most diseases and diagnoses. Make sure that as you navigate through life, you check on yourself. Am I carrying too much? Am I worrying too much?
With the current state of things, people are worried about whether they can afford food or housing. At the end of the day, your life is the most important thing. Even when things are tight and it feels like you don’t have enough, the worry and the stress will do more than not having enough.
Remain hopeful. Hope is what you can hold on to when everything else feels like it’s slipping through your fingers.
Special thanks again to Karyopharm Therapeutics for its support of our independent patient education content. The Patient Story retains full editorial control.
How a PSA Test and Peer Mentoring Helped Rob Face Stage 4 Prostate Cancer
Rob hadn’t expected much from the PSA test (prostate-specific antigen test), it was ordered by his urologist “just in case” after a visit for erectile dysfunction. But that simple test changed everything. His PSA level was 44, far outside the normal range. What followed was a diagnosis of stage 4 prostate cancer, news that left Rob reeling.
A biopsy soon confirmed the worst: prostate cancer, and eventually, that it had spread to his lymph nodes, qualifying it as stage 4. Rob’s world turned upside down. He immediately assumed the worst, and even started to prepare end-of-life documents. One oncologist bluntly told him there would be no cure.
The emotional weight was hard to carry, and Rob admits it took a full year of therapy even to begin managing the anger, fear, and grief that came with his diagnosis. Therapy helped him find clarity amid the emotional chaos and process the many losses he faced physically, psychologically, and relationally.
Rob describes the emotional roller coaster vividly, but through it all, he clung to four words: faith, hope, gratitude, and acceptance. These weren’t just abstract ideas; they became his emotional compass. Faith helped him share the load with something bigger than himself. Hope, even when it flickered, was always present. Gratitude helped him stay grounded. And acceptance, while the hardest, was the most healing.
Support came in many forms, but what stood out most to Rob was one-on-one connection. Through Imerman Angels, a nonprofit that matches individuals with similar cancer experiences, he found a mentor who truly understood the emotional weight of stage 4 prostate cancer. While group support has undeniable value and can foster community, Rob felt that having someone walk beside him on a more personal level offered the space to process his emotions more deeply. Today, he pays it forward by mentoring others, aiming to uplift and empower without overwhelming.
While he experienced lasting side effects — from incontinence to penile shrinkage — Rob emphasizes that honest, proactive care could have prevented much of the trauma. Still, he’s found new ways to build intimacy, especially through therapy with his wife. By sharing his story, he wants others to learn from his experiences, ask the hard questions, and not face cancer alone.
Watch Rob’s video to find out more about his story:
The PSA test that changed everything, even though Rob almost skipped it.
Why Rob thought he was going to die, and what happened next, which surprised everyone.
The side effect doctors didn’t warn Rob about and why it still affects him today.
How four simple words, faith, hope, gratitude, and acceptance became Rob’s lifeline during stage 4 prostate cancer.
From anger to acceptance: How he learned to live again.
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 Hormone Replacement Therapy Helped Honey Feel Like Herself Again After Breast Cancer
When Honey, a talented artist from Tallahassee, Florida, discovered a lump in her breast, it wasn’t during a routine checkup — she hadn’t had a mammogram in 15 years. In fact, she wasn’t one to visit doctors at all. But something told her to pay attention, and she did. That gut instinct led to a breast cancer diagnosis on her birthday in 2020, which was a shock but also a moment of clarity. As a mom, wife, and creative professional, Honey immediately thought that she didn’t have time for this and took quick, decisive action.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Honey opted for a bilateral mastectomy, skipping chemo and radiation because she felt strongly that they weren’t right for her. Her reconstruction process was full of surprises, from unexpectedly larger implants to feeling sidelined in decisions about her own body. Still, she handled the process with humor, especially during a hilarious family moment when her 98-year-old grandmother loudly asked about her new breast size. But it wasn’t all laughs. Honey felt unheard during the surgical process and wishes more women knew they could (and should) speak up more.
What Honey didn’t see coming was the long-term impact of surgical menopause after her oophorectomy. Doctors told her it was “no big deal” and necessary to reduce the chance of breast cancer returning. But what followed were debilitating symptoms: nerve pain, insomnia, arm tingling, weakness, and a misdiagnosis of rheumatoid arthritis. Eventually, Honey connected the dots — her body was starved of hormones. She dove into research, discovering thought leaders and the benefits of hormone replacement therapy (HRT) for breast cancer survivors.
Although it took time and persistence, Honey found a local doctor willing to prescribe HRT. That decision changed everything. Her pain subsided, her energy returned, and she felt like herself again — creative, vibrant, and empowered. Now, Honey urges others to question recommendations, understand available treatment options, and advocate fiercely. She believes that doctors often stay in their lane, and it’s up to patients to see the whole picture.
Honey’s story isn’t just about surviving breast cancer; it’s about reclaiming her health, her identity, and her joy. She encourages others not to be silenced, not to feel guilt, and to forgive themselves for what they didn’t know at the time. With hope, gratitude, and light, she continues to paint and share her truth.
Watch Honey’s video to find out more about her story:
Discover how her intuition led to a life-changing diagnosis on her birthday.
Why Honey said “no” to chemo and radiation, and what she did instead.
The surprising truth she uncovered about oophorectomies and hormone loss.
What no one tells you about breast reconstruction and how Honey handled it.
How hormone replacement therapy gave Honey her energy, art, and identity back.
Name: Honey H.
Age at Diagnosis:
48
Diagnosis:
Breast Cancer
HER2-, PR+, ER+
Staging:
Stage 2
Symptom:
Lump in the right breast
Treatments:
Surgeries: Bilateral mastectomy with reconstruction, lymph node removal, oophorectomy
Hormone replacement therapy (HRT)
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.
Stage 1 Ampullary Cancer and New Motherhood: Michelle’s Story of Grace and Strength
When Michelle welcomed her first child in early 2023, she never imagined that just three weeks later, she’d be facing a diagnosis of stage 1 ampullary cancer. Settling into new motherhood should’ve been a time of bonding, baby cuddles, and late-night feedings — not scans, surgeries, and chemotherapy. Her world turned upside down almost instantly, and what followed was a blur of medical decisions and emotional upheaval.
Michelle first noticed something was off during her pregnancy. Recurring bouts of pancreatitis led doctors to discover gallstones and a small, benign tumor. Since everything seemed under control, her care team agreed to wait until after her baby was born to remove it. But when surgery day came, doctors discovered that the tumor had grown, and that it was cancerous.
That moment changed everything.
Suddenly, Michelle found herself navigating the complexities of parenting a newborn while preparing for a major procedure: the Whipple surgery. That day marked the first time she had to leave her baby. It wasn’t just physically painful; it was emotionally gut-wrenching. But with her husband by her side and her family caring for her infant, she leaned on her faith and support network for strength.
Even after the successful surgery, her path was far from over. Michelle went through 11 rounds of chemotherapy for stage 1 ampullary cancer, each session draining her physically and emotionally. She candidly shares how fatigue and sensory triggers, like the smell of the alcohol swab at the infusion center, made each treatment harder. Yet, through it all, she never stopped showing up for her child or for herself.
Now two years in remission from stage 1 ampullary cancer, Michelle is in the thick of survivorship. She admits that this stage brings its own set of challenges: processing the trauma, managing lingering pancreatitis, and learning who she is now. Celebrating her son’s birthdays is bittersweet; it reminds her of the season her life took such a dramatic turn. But Michelle is honest, hopeful, and deeply grounded in faith. She’s also fiercely committed to creating space for other young adults going through similar diagnoses.
For Michelle, hope comes in the form of connection, whether it’s a single friend who gets it or a support group of people living with rare cancers like stage 1 ampullary cancer. She advocates for more resources, more empathy, and more grace. Most of all, she encourages others to stay open to faith, healing, and people.
Watch Michelle’s story to find out more:
What happens when your cancer diagnosis comes just three weeks after becoming a mom?
Michelle reveals the emotional weight of leaving her newborn for surgery.
Discover how faith and family supported her through stage 1 ampullary cancer.
Learn why survivorship might be the most emotionally complex phase.
Michelle’s story shows that hope, connection, and grace go a long way.
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: Mild back pain on her left side that escalated in severity Treatments: Chemotherapy (etoposide, doxorubicin, and cisplatin), mitotane, surgery, lenvatinib ...
Living Creatively with Stage 4 Neuroendocrine Carcinoma: Anita’s Story
When Anita was diagnosed with stage 4 neuroendocrine carcinoma at just 22, her world flipped. Life became unfamiliar and uncertain, but not without meaning. Despite facing a rare and aggressive form of cancer, she’s discovered ways to stay grounded and empowered through art, advocacy, and honoring her father’s legacy.
Anita’s symptoms of leg spasms and abdominal swelling began seven months after her father passed away from skin cancer, but they were initially dismissed as due to stress and anxiety. Frustrated and unheard, she pushed for answers, eventually heading to the ER one Saturday, expecting a quick scan before a beach day. Instead, she was told she had more than 16 tumors and had to stay overnight. That moment unraveled everything.
Doctors first suspected Ewing sarcoma. After weeks in the hospital and a biopsy sent to Mayo Clinic, her stage 4 neuroendocrine carcinoma diagnosis was confirmed. Her liver hosted a massive 12-centimeter tumor, and the cancer had spread to her bones. The treatment plan? Lifelong chemo.
The early rounds of chemotherapy and immunotherapy were brutal. Worse, a failed clinical trial for stage 4 neuroendocrine carcinoma treatment and unchecked tumor growth led to partial paralysis. Emergency spinal surgery, intense radiation, and learning to walk again became Anita’s new reality. Yet through it all, she found a powerful coping tool: art.
Anita creates alien-themed cancer awareness art under the name “Awkward Life of Cancer,” with a character named Apollo who represents the unique, isolating experience of living with cancer. She channels awkwardness, grief, and hope into creativity, making something deeply personal and universally relatable. For her, Apollo is for anyone who feels misunderstood or otherworldly in their pain.
These days, Anita continues chemotherapy at home and goes for infusions every two weeks. She’s rebuilding independence with the help of physical therapy. While she’s still regaining full mobility, she takes morning walks with her dog and celebrates small milestones like putting on socks or walking without a cane.
Her dad, a Vietnamese war veteran and her forever hero, remains her guiding light. His strength fuels hers. Through sadness and setbacks, Anita reminds others that it’s okay to rest, feel deeply, and then keep showing up for yourself. Believing you’re meant for greater things is what keeps the fire alive.
Watch Anita’s video to find out more about her story:
From classroom to canvas: how she turned cancer into creativity.
“I felt like an alien” — Anita’s honest take on being misunderstood with stage 4 neuroendocrine carcinoma.
She was dismissed by doctors, but her voice never stayed silent.
Cancer changed her body, not her spirit: how Anita reclaimed control.
Why Apollo the alien represents all of us: navigating life’s hardest chapters.
Name: Anita T.
Age at Diagnosis:
22
Diagnosis:
Neuroendocrine Carcinoma
Staging:
Stage 4
Symptoms:
Leg spasms
Vomiting
Back pain
Abdominal swelling and pain
Fatigue
Loss of appetite
Treatments:
Chemotherapy
Immunotherapy
Clinical trial
Radiation therapy
Surgery
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.
