Tag: early onset CRC

Self-Advocacy Saved Sydney’s Life: Diagnosed with Stage 4 Colon Cancer

Post author By Chris Sanchez
Post date February 27, 2026
No Comments on Self-Advocacy Saved Sydney’s Life: Diagnosed with Stage 4 Colon Cancer

February 27, 2026

Self-Advocacy Saved Sydney’s Life: Diagnosed with Stage 4 Colon Cancer

Stage 4 colon cancer is a diagnosis that carries immense weight, especially when it comes at age 27. For Sydney, the path to discovering this reality began long before a doctor confirmed it. After years of dismissing chronic bloating and constipation as travel issues or normal digestive quirks, her symptoms escalated. Despite severe pain and an intuitive sense that something was wrong, she faced a barrier familiar to many young patients: being told she was too young for serious illness.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

The turning point came when Sydney, desperate for answers and unable to get a referral, made a bold decision to advocate for herself by fabricating a specific symptom — blood in her stool — to secure an appointment. This critical move led to a colonoscopy that revealed a massive blockage, resulting in an immediate colon cancer diagnosis. What followed was a whirlwind of emergency surgery, an unexpected ileostomy, and a move to a new city, all while processing the shock of a life-altering disease during the height of the pandemic.

Sydney’s experience has been defined not just by her diagnosis but by her resilience in navigating the medical system. After initially feeling written off by providers who offered no long-term hope, she sought multiple opinions and transferred her care to Siteman Cancer Center. There, she found a team that championed her quality of life, offering advanced procedures such as biomarker testing and various therapies. Today, Sydney balances ongoing treatment with her passions as a foodie and animal lover, finding strength in community and proving that a stage 4 colon cancer diagnosis does not mean the end of living fully.

Watch Sydney’s video and browse her edited transcript below to learn more.

Trust your intuition: When medical professionals dismissed her pain due to her age, she trusted her body’s signals enough to push for a screening, even when it required bending the rules to get in the door
The power of second opinions: Transitioning from a care team that told Sydney “we don’t know how to help you” to specialists at a research center opened new doors for treatment and renewed her hope
Quality over quantity: Her current care team prioritizes her ability to live a full life — traveling, eating well, and resting — rather than just focusing on aggressive treatment schedules at all costs
Community is vital: Finding specific patient groups, such as COLONTOWN and Fight Colorectal Cancer (Fight CRC), transformed Sydney’s experience from one of isolation to one of empowerment, connecting her with others who are walking the same path
Rest is productive: One universal truth she learned is that resting is not laziness; it is an active and essential part of the healing process that allows the body to recover from the trauma of treatment

Name: Sydney S.
Diagnosis:
- Colon Cancer
Age at Diagnosis:
- 27
Staging:
- Stage 4
Symptoms:
- Constant stomachaches that only went away after bowel movements
- Pain after eating
- Changes in bowel shape and size
Treatments:
- Surgeries: colectomy, temporary ileostomy, ileostomy reversal
- Chemotherapy: FOLFOX, FOLFIRI, trifluridine and tipiracil
- Monoclonal antibody: bevacizumab
- Radiation therapy
- Hormone 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.

Transcript of Sydney’s Interview

My name is Sydney
My early symptoms
My path to diagnosis: advocating for care
Receiving the colon cancer diagnosis and emergency surgery
Coping with the initial shock and chaos
Finding the right care team and second opinions
A look at my treatment
Managing my colon cancer treatments and side effects
Maintaining quality of life during colon cancer treatment
How to support someone with cancer
The importance of hope and doctor-patient communication
My final advice: finding community and moments of joy

My name is Sydney

I am 32 now. I was diagnosed when I was 27, on September 28th of 2020, with stage 4 colorectal cancer. I’m from St. Louis. Well, actually, I’m originally from Arkansas, but right now I live in St. Louis.

I work in a cat cafe on my off weeks. I absolutely love animals and helping them. We get the cats adopted. I have two cats and a pit bull of my own right now. I love anything creative. Before I was diagnosed, I did a lot of professional theater work. I really like acting on stage, but I haven’t done that in a while.

I love Disney. I did the Disney College program in 2013, and so the obsession grew from that. I love food. My husband and I are really big foodies, so it’s really cool that we live in St. Louis because it has really great restaurants.

My early symptoms

I would always get what I thought was travel constipation because anytime we would travel, I could never go. Who knows when the cancer or a polyp started forming, but I remember always having trouble with constipation and bloating. Growing up, I never thought that there was an issue. It was just a normal thing because it would always work itself out.

Then, around the time my husband and I got married in 2018, things started getting worse. I was in pain more often. I thought I had IBS, and the doctors would just tell me, “No, you’re fine. All your labs look good. You’re too young for anything.”

In 2019, we went on a first anniversary trip to Riviera Maya. It was so bad. I was trying to read all these drug labels, and I was like, “I don’t know what this means, but I need something to help me get this out.” I think that maybe when the blockage started growing. I tried elimination diets, gluten-free, dairy-free, just to see if maybe it was the diet, because I used to do CrossFit four times a week. I would do spin classes. I love a sweet treat and a good burger, but I was eating pretty healthy. Every doctor would just be like, “You’re too young.” So I just never thought cancer would ever be the thing.

My path to diagnosis: advocating for care

Mid-summer in 2020, I was bent over at work in so much pain. I would only be relieved if I tried to go to the restroom, but after I ate, I was just always in so much pain. I finally called a gastroenterologist in Arkansas because I was still living there, and they wouldn’t see me just from the symptoms that I was telling them. They were like, “Well, you don’t have a referral.”

Then this thought came into my head. People always say, if there’s blood in your stool, they’ll see you hopefully. So I was like, “Oh, there’s blood in my stool,” even though I had never seen any. I lied, and she was like, “Okay, we can get you in.” I went in for my colonoscopy and endoscopy. I woke up in the middle of my colonoscopy because I heard them say “cancer.” They could not even get a foot inside my colon. Then they sent me straight for scans and surgery and everything from there.

I was just like, “I can’t be the one to figure out what’s wrong with me, right?” I have no experience in the health field, and people just continuously told me, “You’re too young, you’re fine.” I’m like, “I know something’s wrong inside my body.” For a little bit, you almost feel kind of crazy, or you just have these breakdowns of, “Is anyone going to believe me?” Thank God for that gastroenterologist for being like, “Okay, we can take you.” Even though I did have to lie because I was only 27 and didn’t have a referral, because my doctor at the time was like, “You’re too young.”

Receiving the colon cancer diagnosis and emergency surgery

It was 2020, the peak of the pandemic, so my husband was not allowed to come in with me. But I knew because, waking up after the colonoscopy, I didn’t remember them saying “cancer” at that moment. I just knew something was up whenever the doctor was like, “Okay, your husband’s going to come sit down in this room with us.” I was like, “Okay, well, that’s not a good sign.”

He was just like, “I’m 99.9% sure you have colon cancer… whether it’s cancer or not, you either way have a huge blockage that needs to be removed.” He said, “You cannot eat. You have to have smoothies and drink until your surgery because the blockage is so bad.”

On that weekend, I had a colonoscopy, and they scheduled surgery, but we had already scheduled to move to St. Louis. 2020 was a crazy year. So we move over that weekend, and I have to be back that Monday for surgery. But we had moved so much that I was like, “I need to eat, I have to eat something.” So I ate a little bit and was in pain. Then the prep for the surgery did not work. Nothing came out. On the way to the hospital, I’m crying because I’m like, “They’re not going to do the surgery because nothing came out.” But then I’m also trying not to throw up.

They did the surgery, and I woke up with an ileostomy that I did not know I was going to get because the prep did not work. They had to let my bowels rest. But I got it reversed after a little over a year.

Coping with the initial shock and chaos

I don’t really know how to describe it other than I was just like, “Okay, that’s what they told me to do. So that’s what’s going to happen.” I know nothing of this world. I had only known family members or friends who had cancer. I’ve never experienced it myself. I was like, “Well, these are the professionals, so I’ll just listen to what they do.”

Sticking to the matter-of-fact things was the only way that I was able to grasp what was going on. Even five years into it now, people still give you all of this advice, “You should try this,” or “Have you looked into this?” Or people would always ask, “Do you have an update?” or “What did your doctor say?” It’s just all the constant questions. For the first two years, I was just telling anyone, “If you have advice for me or if you have a question, please don’t, because I do not have the capacity to deal with that when I’m dealing with all these new things that have been thrown at me.”

I just pretty much stayed like, “This is what’s happening, and this is what I have to do. So this is what I’m going to do 100%.”

When we were sitting in that room, not when it was confirmed, but in the room after the colonoscopy with the doctor saying, “I’m 99% sure,” I was also still a little bit high from the anesthesia. I was just sitting there, and my husband was trying to comfort me, but he’s freaking out. He’s like, “How is she not freaking out?” I think I just froze. I just remember he was rubbing my back so hard. I was like, “Okay, that’s enough.” He was like, “I’m sorry, I’m just — how are you not freaking out right now?” I was like, “I think I’m just literally in shock. I’m a little frozen right now.”

When I woke up after surgery with the ileostomy, the doctor told me it was only stage 3B at that point. But then, when I got to St. Louis, and we did scans again, it was stage IV. I have never had a doctor give me a timeline or anything or tell me that I’m incurable. So that was very helpful. But I have had doctors tell me, “We don’t know how to help you anymore.” So that can be discouraging. To be told, “Hey, we don’t know how to help you anymore, you need to go elsewherer” was like, “No, what do I do now?”

Finding the right care team and second opinions

When we first moved to St. Louis, it was a year after being kicked off my parents’ insurance. My husband and I were trying to find insurance and then find a hospital that would take it. I started treatment at St. Louis University (SLU), and I had my first oncologist for one year, but she moved back to Texas to be with her family.

I applied for disability because I couldn’t work through treatment, especially Folfox or Folfiri, the heavy treatment. My husband’s a barber, so basically self-employed. I applied for disability, and I got it. I didn’t know that after two years, you get put on Medicare if you’ve been on disability for two years. So when I was able to be put on Medicare — which there was a whole awfulness about because I was on Medicare for eight months without knowing it and still paying for regular insurance — I was able to move to Siteman Cancer Center.

Being at Siteman has rejuvenated my hope – 100%.

Now, just always kind of telling myself, “It may happen, but I’m not going to die from this.” I believe that I will reach no evidence of disease, and then I will see it for five years, and they will tell me that I’m cancer-free. That’s what I believe. Of course, there are hard days, but really, it’s just what I keep telling myself. My husband likes to say I’m a little witchy, but I do my little manifestations, write in my journal, and put it under my pillow.

A look at my treatment

Initially, I did 12 rounds of FOLFOX. We waited because I was clear after the 12 rounds of Folfox. We waited for scans for two to three months. While scans were clear, bloodwork wasn’t. My doctor at the time said, “Well, we need to be aggressive.” So I started on 12 rounds of FOLFIRI.

After my first 12 rounds of FOLFOX, I did six rounds of radiation, three on this side of my lungs and three on this side. Then the blood work came back bad, and so then I did the FOLFIRI for 12 rounds, and then they put me on capecitabine, which is a chemo pill. That’s when they told me, “We can’t help you anymore. I don’t know what to do.”

So I went to Moffitt in Tampa to get a second opinion because they would take my insurance at the time. He was like, “No, I’d put you on trifluridine/tipiracil. You do have more options.” So we switched to that drug. I was on it for well over two years. It would be stable, then a little progression, and then go back down to stable.

Then I had a new spot show up in my liver, maybe in September or October of 2025. Now I’m on FOLFIRI again, but I’m at a low dosage, so it’s not as bad as the first time, but I am starting to experience a lot of the things — obviously, my hair is falling out again. My eyebrows are gone. Gotta draw them on. But that’s what makeup’s for.

I have two spots for sure on my liver, which significantly shrunk on scans after being on FOLFIRI. One almost went down a whole centimeter, or maybe it was cut in half. And then I have one that we’re not sure what it is on my liver. It’s not been confirmed. Then, on my lungs, I have numerous spots, too many for surgery.

Managing my colon cancer treatments and side effects

I have been on the schedule every other Tuesday for three years now. I’m on bevacizumab right now with FOLFIRI. So I go in, get labs drawn. They check my CEA every time. But I also have to do a urine sample to see if there’s protein in my urine from the bevacizumab. Unfortunately for me, I’ve been on bevacizumab for three years straight now, so my levels keep going up. I do have a kidney specialist who keeps track of it. We had to pause the bevacizumab on Tuesday because I had such high protein.

I am sent home on a 46-hour pump with my port right here. It’s affecting my vocal cords; my voice always goes out on these three days of treatment. Obviously, I get digestive issues, appetite, and fatigue, all of the things. But once I get unplugged on Thursday, I’m usually slowly coming out of that chemo fog. By about Friday night, I’m okay again. I tell my husband, “I’m sorry I was so lazy today.” And he’s like, “You’re not being lazy. What are you talking about? You’re on chemo.”

Maintaining quality of life during colon cancer treatment

My husband and I are both foodies, and so when I do have an appetite, I’m like, “Okay, we have to go find a good restaurant, or I need a good breakfast.” We also really love music. So we go to shows often, and we used to go to Music Fest all the time. We slowed down on the Music Fest, though, just because there are so many people and it’s a lot for a whole weekend. If the venue doesn’t have a chair, then I’m usually out.

I spend time with my pets, working at the cat cafe, my friends, and my family. We travel home to Arkansas pretty often. Especially with being at Siteman now, they are very much into the quality over quantity. My doctor told me, “If you want to take a trip and you want to pause for a week, we can pause for a week.” He was like, “I would rather you go live your life than just constantly be on treatment and not doing anything fun.”

How to support someone with cancer

When I got diagnosed, people didn’t really know what to say. How do you tell someone, especially after you get a stage 4 diagnosis — people hear that, and they think “terminal.” No shade to my sister, but she didn’t know how to handle it. She told my young nephew when I was getting treatments that I was going to get my nails done. I was like, “I mean, I wish.”

People really don’t know what to say, what to do. It can be really isolating. But I would tell people that it is going to be okay. There’s going to be a lot of hard times. But you find that if you can find community, especially in your specific cancer — like I found Fight CRC, then Colon Town — and I’ve met so many people who are going through the same thing as me.

You just have to find someone to champion you. My husband and my parents have learned so much. It’s night and day from when I got diagnosed to how people support me now. I do think cancer patients also need to let people know how to maybe readjust the speech. Maybe don’t tell me, “My grandma died from cancer,” as soon as I tell you I have cancer. Maybe don’t say those things.

I found The Patient Story on Instagram. There’s a colorectal cancer patient right now who has been given only a certain amount of time to live. But she said, “You know, as long as I can tell my story, and it saves one person’s life…”

The importance of hope and doctor-patient communication

I am so grateful that no doctor has ever told me my prognosis. No one’s ever called it terminal for me. My first oncologist would let me break down in front of her, and she would just put her hand on my back, and she’d be like, “Sydney, you’re going to be okay. We have these treatments, and yes, they’re difficult, but we have so much proof behind the first treatment that I did that it can be successful for you.” She would always point that out to me.

Being at Siteman, they’ll sit down and explain everything to me. I got pushed into menopause from chemo, and they sent me to a woman specialist who’s in the hospital. If something else is wrong, they’ll send me to this specialist. They just really, really care. Having a doctor who, while they have so many patients, can be so personable and say, “We care about you as an individual and not just another number,” has really helped.

My final advice: finding community and moments of joy

I don’t want to be cliché and be like, “Don’t give up,” but don’t give up. You can do it. I know people speak about how they don’t want to be called a warrior. I’m tired of people telling me that I’m brave because what other option did I have? But I mean it. We are fighting.

Take the time to rest. Don’t think you are lazy for resting, because resting is how you’re going to heal. Do the things that make you happy. You have to find those moments of joy, even in the heartache of everything. Find a community 100%.

I have friends all over the world, and I’ve only maybe met them through social media or maybe once in DC, and I know that I can message them and be like, “Hey, I need to have a breakdown, and I don’t want to put that on my husband right now. Can I please break down to you?” Find community.

It’s hard, but you can do it. If you decide one day, “I’m tired of treatment,” that’s your decision. And I fully support that as well.

Thank you for sharing your story, Sydney!

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“I’m Still Affected 25 Years Later”: Maria’s Experience with Kidney Cancer

Post author By Chris Sanchez
Post date January 16, 2026
No Comments on “I’m Still Affected 25 Years Later”: Maria’s Experience with Kidney Cancer

January 16, 2026

“I’m Still Affected 25 Years Later”: Maria’s Experience with Kidney Cancer as a Child and Colon Cancer as a Young Adult

Maria’s cancer experience began when she was just 15 months old, when she was diagnosed with Wilms tumor, also known as nephroblastoma, a pediatric kidney cancer. Growing up, she was in and out of hospitals in Ottawa, Canada, for countless appointments, treatments, including surgery and radiation, and a gastrostomy tube or G‑tube that stayed in place for 12 years. She says that as a young child, all she knew was that she was sick and assumed everyone else lived that way, too. She adds that she felt confused and in denial about the seriousness of her cancer.

Interviewed by: Ali Wolf
Edited by: Chris Sanchez

As a teenager, Maria says she started experiencing bleeding in her stool and stomach issues, but when she told her pediatric oncologist about these symptoms, she wasn’t taken seriously. Eventually, a colonoscopy revealed early-stage colon cancer, which was removed with a small surgery. Even then, Maria’s instinct was to think, “It’s gone, so everything is good now.”

In her 20s, Maria faced new challenges, including bowel obstructions and recurrent polyps requiring colonoscopies every six to 12 months. For about half a year, clinicians suspected she had Bloom syndrome (BSyn), which can carry a significantly shortened life expectancy. Later results confirmed mosaic variegated aneuploidy syndrome 3 or MVA3, a rare genetic disorder where some cells have an abnormal number of chromosomes. MVA3 is associated with increased cancer risk, especially Wilms tumor.

That diagnosis transformed Maria’s outlook. During the months when she thought she had Bloom syndrome, she believed her life might be very short. She focused on Brazilian jiu-jitsu and spent time with her cats. After learning about MVA3, she was told she would likely live much longer. She began planning her career, and today Maria works as an educational assistant supporting students with disabilities. She continues to heal emotionally through therapy, peer cancer communities, and her own evolving understanding of her experience as a childhood cancer survivor.

Watch Maria’s video or read the edited interview transcript below to know more about her story.

Maria explains how her rare condition has affected her physical and mental health decades later
She highlights the importance of self‑advocacy in healthcare, especially as a young adult whose symptoms were dismissed or minimized
The importance of connecting with other young adult cancer communities and doing therapy to recognize that long‑term emotional and physical effects are common and valid
A universal truth in Maria’s experience is that patients often know their bodies best and deserve to be heard and believed when they describe symptoms
Her perspective shifts from denial to healing, helping Maria to envision a bright future that includes work, hobbies, and ongoing healing

Name: Maria F.
Age at Diagnosis:
- 15 months
Diagnosis:
- Kidney Cancer (Wilms Tumor)
Mutation:
- Mosaic Variegated Aneuploidy syndrome 3 (MVA3)
Symptom:
- Back pain
Treatments:
- Surgery: nephrectomy
- Chemotherapy
- Radiation

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.

Transcript of Maria’s Story

Hi, I’m Maria
New job and working as an educational assistant
Living with disability and wanting to support others
Childhood innocence and realizing life was different
Family silence, denial, and wanting more information
Learning the word “cancer” and truly understanding it as an adult
Denial, early colon cancer, and not being believed
ER experiences, advocacy, and pain
Early colon cancer removal and initial denial
G‑tube, long‑term pain, and waiting for help
Feeling like a burden and hearing my mother’s pain
Cancer camp, Young Adult Cancer programs, and therapy
Finding connection with other survivors
Bowel obstruction, polyps, and finally getting coordinated follow‑up
My thoughts on genetic testing and Wilms tumor features
My experiences at different ages and PTSD from procedures
Minimization of pain and struggles in the ER
Early signs as a baby and port, surgery, chemo, and radiation
Self‑advocacy, mental health, and healing from childhood cancer

Hi, I’m Maria

I had Wilms tumor, which is a kidney cancer, when I was 15 months old. I live in Ottawa, Ontario, Canada.

I am 27 years old. I just turned 27 last week, and I’m a big enthusiast of martial arts, and I do Brazilian jiu-jitsu. I’ve been doing this sport for about eight years, I believe, and I did kickboxing in the past, and I compete once or twice a year. I’m really interested in that. That’s one of my biggest passions.

I love Brazilian jiu-jitsu because it makes me feel more empowered and able to do things in my own body. Even though what I’ve been dealing with as a child, I’m still able to use my body and to perform with my body. It’s very physical, but it’s also challenging to the mind, and it’s very close contact, so you make friends for life, and you’re in very close contact with them. You have to trust them, and through jiu-jitsu, I’ve been able to feel a bit more confident in myself. I’m still trying to increase that, and I’m also trying to increase more positivity in my life, and I have a lot of great people there that help me get through that and help support me.

I help support them as well in what they need in life.

New job and working as an educational assistant

I actually just had an interview yesterday for a job, and I got the job today. So I’m happy to see in the new year what that will lead to. Currently, I’m also a casual EA at the school, but starting in the new year, I think I will have a more stable position at the school.

Right now I’ve been helping a lot with people with disability or in wheelchairs. I did that in the past as well, but now I’m in the schools with that, so I help them with education as well. It’s an EA. Yes, it’s an educational assistant.

Living with disability and wanting to support others

I think because I’m also a person with disability, and I don’t think I really understood that when I was a kid, and understood all the possibilities of help that I could have had. I had my mom advocate for me for some help as well. But now I see the amount of help that you can ask for. Now it might be different because of the difference in generations.

I think just trying to support kids now, and also adults, when I used to work with adults, just to be able to fulfill their life and make their life easier in education, that’s why.

Childhood innocence and realizing life was different

I think I was very innocent as a child. I didn’t really think of anything at all. Later on, as I aged, I noticed that not all my friends were dealing with the same stuff. I thought everyone dealt with it. I thought having millions of appointments a year would be normal for people. I just knew I was sick when I was younger, and that’s all I knew.

When I tried to ask my parents when I was more curious and I turned a bit older, they would tell me, “Oh, well, your brothers are going to do the same thing when they get your age,” since my brothers are younger than me. For me, I thought, “Haha, they have to deal with this stuff when they’re older.” But it was definitely not the truth. I think they did that to protect me, and they weren’t sure what they wanted to tell me or how to tell me yet, because I was still a young child.

I also felt, because of the cancer stuff too, that I did feel like a normal child, but I knew that I didn’t really develop as much as the other children, learning‑wise. I realized that some kids knew a lot more than I did, and it was just, “Okay, well, I don’t know what I’m supposed to do. I don’t know why I’m in school, but I don’t know.”

I didn’t know that there was a life after. So after you graduate, you can start working, you can get married, you can have kids, and all that. I just went day by day, not really understanding a lot.

Family silence, denial, and wanting more information

I think it would have been nice to know a bit more. We’ve never really spoken truly about things. It was always if someone came by to visit, sometimes my mom would tell some stories to them, and that’s how I knew a bit more about myself or what happened when I was younger. But we never had an open discussion. It always felt like a closed door. So it would have been nice to have a bit more.

Also, knowing what’s happening, why things are happening like this. I think I was always left in the dark. That led me to denial when I was older, too. “Okay, well, everything is fine, it’s fine,” because when I was a kid, my parents didn’t cry or anything. They didn’t seem like they were upset. They just said, “Okay, it’s okay.” But I think that was just in front of me, and behind my back, they would probably say more than that.

Learning the word “cancer” and truly understanding it as an adult

I think that was more towards when I was a teenager. I think I knew the word when I was maybe an early teenager, but I didn’t really understand everything fully until maybe even adulthood.

I think that I really understood also because I was able to go to camp, and I was seeing other adults who were diagnosed as a kid and really able to talk to them and really understand a bit more. I think mentally as well, learning‑wise, it was easier for me to understand then, because I couldn’t really develop well even as a teenager. Maybe I thought I understood, but now that I’m older, I think it’s mostly when I was a young adult that I really understood, “Okay, this is happening, this happened, and now I’m continuing trying to survive this and understand and knowing that this happened when I was a kid, but now it’s still affecting me over 20, 25 years later.”

Denial, early colon cancer, and not being believed

I think I knew maybe when I was a teenager, I was more in denial because I was a little bit rebellious against the healthcare providers as well. Because of that, I had symptoms not of recurrence, but symptoms from colon cancer, and it turned out to be an early stage of colon cancer. But the doctor, my oncologist at the time in pediatrics, didn’t really believe my symptoms. Then, when I told her, “Okay, then I don’t have this symptom,” she would say, “Okay, well, you did tell me you had that.”

So it was very confusing, and I was very in denial, like, “Okay, maybe I’m just making things up.” But it was a pretty big symptom, and I knew that symptom. I had some bleeding in my stool for months, and I felt like, “Okay, maybe it’s not as important as I think it is.” When I was older, I got sick as well. I kept having some stomach issues, so I think from then on I knew, “Okay, I’m still affected by this. I’m still affected by the chemo, by the radiation, and by the surgeries from when I was younger.”

So it was an early stage of colon cancer, and that’s because I got sick later on. Eventually, I did get a colonoscopy. They finally figured out it was that, and they were able to remove it. But my oncologist at the time didn’t believe me or didn’t really help me at the time.

I’m not sure. She asked if I had any bleeding in my stool or anything like that, and I said yes. Then I said, “It’s a bit too much information,” but she asked if I was bleeding in my stool or just when I’m wiping or anything, and I said both. She said, “It can’t be both, so you have to pick one.”

Then I told her, “Okay, well, it’s none,” and then she said, “Well, you told me it’s both, so which one is it?” I don’t remember what it was at the end, but it was just a weird encounter. I haven’t seen her since then. I didn’t want to see her again. I was 17.

ER experiences, advocacy, and pain

I think I definitely felt disappointed, but I wasn’t shocked because there were a lot of times before that that doctors either ignored me or didn’t believe me. I really thought that was going to be the norm from then on.

So now every time I go to the ER, I make sure I’m in like a ten‑out‑of‑ten pain before I go, and I make sure I have my mom or a friend with me, because if I go alone, I get treated really poorly, and I’m in too much pain to advocate for myself.

My mom usually has the energy to push, and she’s been through it with me, so she knows how to push doctors.

Early colon cancer removal and initial denial

I think that was in 2018. I was probably around 18 or 19 during that time. It was either 2018 or 2019, but it was a very early stage, so they were able to remove it during the colonoscopy.

When the doctors told me about that, my instinct was, “Okay, it’s gone, so everything is good now.” I think I was still in denial, not understanding that now there’s a very big chance of recurrence and things like that. I find that I’m very lucky that that one was caught really early, and I just needed a small surgery to remove it.

G‑tube, long‑term pain, and waiting for help

Obviously, I can’t remember the very early years. I do remember being around four to ten years old. In those years, I knew I had a lot of appointments, and I was in school.

I also had a G‑tube, and I’m struggling with the pain from that till now. I’m supposed to go to the pain clinic, but I’ve been waiting for eight months now, and I’m still on the waiting list for that.

Feeling like a burden and hearing my mother’s pain

I think with my mom telling the story a few times, and she did have a few speeches at her school since she’s a teacher as well, just knowing that when she tells the story that she’s in pain, she’s still in pain, or she’s still tearing up — and that’s been over 25 years now — I feel a bit of a burden. I felt that a long time ago as well, and now I’m trying to heal from that.

I definitely do feel guilty putting her through all that, even though I know it’s not my fault. I know she’s been there a few times, at least. She’s always been on my side in the hospital. I’ve been in the hospital, I think, about a year at a time, and sometimes in and out, and I’ve been in the ER over 300 times at the children’s hospital.

She mentioned how it was difficult to go through treatments because I wasn’t eating, and that’s when they decided to put the G‑tube, the feeding tube. I had that for 12 years. A few times, I was in a Code Blue situation, so she mentioned how scary that was.

Since I was young, for radiation, I had to be put under. They don’t do radiation in the children’s hospital, so in Ottawa, we have the children’s hospital, and there’s a tunnel that goes to the General, which is for the adults. They had to run all the way there to do the anesthesia, get the radiation done, and run back before I woke up.

She mentioned that even from a young age, I had a very high tolerance to pain and a very high tolerance to medication. Sometimes I was in a Code Blue because they gave me too much morphine, even though I wasn’t falling asleep or acting the way the anesthesia was supposed to act.

Cancer camp, Young Adult Cancer programs, and therapy

Now it’s much better. Being able to go to the Ottawa Cancer Foundation and YACC (Young Adult Cancer Canada) and the cancer camps as a child and as an adult really helped. YACC as well, because there are some conferences, and they talk about things like that. It was nice to see that those are normal things that people who are surviving or have survived cancer feel too, that you’re not the only one.

It’s nice to see that in the community. It helped a lot. I started doing therapy as well to help with things like that and to heal from the past. I hope these videos help, too, for other people to know that they’re not alone and that there are a lot of things we don’t talk about or doctors don’t tell you about. Those other survivors really — it felt kind of like a relief, like, “Okay, okay,” and there are also strategies to try to understand and try to heal from it in Canada.

Finding connection with other survivors

I think just meeting those people, it felt so easy to meet them. There was just this type of bond that’s already connected, and this type of empathy. You don’t need to say anything, but you just understand each other. It was so nice to meet all these people.

For years, I thought I needed to get over this — these fears, everything like that — because it’s been so long since I had cancer and this shouldn’t be affecting me now. But knowing and seeing them, it really did really well for me.

Bowel obstruction, polyps, and finally getting coordinated follow‑up

When I was an adult, maybe in 2022, I had another obstruction in my bowel. A non‑surgical oncology doctor from gastro came in to see me and started to really follow up with me, really started the ball moving because I kept having a lot of polyps reappearing every year. I keep having colonoscopies every six months to a year and endoscopies as well.

She really pushed the ball to see genetics and to see another gastro as well, to keep following up, and just to see all these different doctors to really keep me in the loop. I hadn’t had a good follow‑up since I didn’t want to see that oncologist as a child, and that oncologist as a follow‑up in adulthood, too. I didn’t want to see her.

Genetic testing, Bloom syndrome scare, and mosaic variegated aneuploidy syndrome 3

In the genetics department, they were able to assess me, and they were able to test for a genetic disorder for polyps in the colon, but it tested negative. They kept doing those tests. They really thought I had Bloom syndrome. So I did the bad thing of searching it up and noticing how little the life expectancy is, and because they were pretty much 99% sure I had that, they kept retesting me when it was negative.

Because there was a low life expectancy, for, I think, half a year, I was thinking, “Okay, I’m still in school, so I don’t really need to get a job because I’m not going to live that long.” I wanted to get more into jiu-jitsu, really get better at it because I like that, and to spend time with my cats and maybe travel if I can. That was really my goal. But then they noticed it was something else, and it was called mosaic variegated aneuploidy syndrome 3, and there’s just a high risk of cancer, and there’s no danger to life expectancy.

Then my perspective kind of changed, like, “Okay, so I actually need to get a job, and I need to figure out everything else, but also monitor my health,” because this year has been a bit more downhill. I’m going to live longer than I expected, which is nice to know, but I need to rethink, because I was trying to accept death at an early stage. I’m happily living now. I’m trying to do the best I can to do what I can.

My thoughts on genetic testing and Wilms tumor features

For me, it was a bit of a shock, because usually it’s kind of odd to have cancer below the age of two or even below the age of five. So I feel like they should have or would have tested me then. But at the same time, the genetic testing that I did at the end, because they realized it’s definitely not Bloom syndrome, is like a sister disorder to it, because they have very similar traits.

It was due to Wilms tumor and also short stature, learning disability or developmental disability, microcephaly, and trouble feeding, which are all things that I had as I was diagnosed with cancer. So all these things, it just seems like it would have been a normal thing to do to test. But the testing pool for MVA3 was still being developed, so there are still some false negatives. I was just really lucky.

Yeah, that’s what I’m thinking. It’s nice to know. Right now, I’m still having a lot of stomach issues, but I know what’s going on, and I’m still following up.

My experiences at different ages and PTSD from procedures

I think it was a mix when I was very young. I didn’t know anything, so I was just like, “Okay, okay.” My mom would play games with me when I was waiting for appointments. The floor was very colorful, so I had to jump from one color to another, and they were fun games. I did have this one scan that I was really terrified of, and I think even as an adult, I’m scared of it. I noticed with therapy that I might have a bit of PTSD from that and the sound of it.

I also had a favorite nurse. I could only get blood work with this nurse and no one else. Anyone else — it was no. I would throw a fit.

As a teenager, I think mentally everything was just… as a teenager, your mental state is a bit wonky. It was very difficult back then, because I think I was also rebellious. As an adult, I think I had one good encounter because the doctors I followed up with were really nice, but my ER visits were always very difficult.

Minimization of pain and struggles in the ER

I’ve never felt believed. I always felt like I was just a child being a spoiled brat and just whining because of menstrual pain. That’s what doctors would ask me all the time, like, “Are you on your period?” if I came in with stomach pain, which is all the time, I had obstructions. They would always say, “Do you have menstrual pains? Do you have your menstrual cycle right now?” It was hard because I’m not going to go to the ER just because of that.

Also, because I have a high tolerance to pain, it’s difficult to demand more pain meds, even for my mom to do that. In my last visit, I was very sleep deprived, and I was in a lot of pain, but they were not giving me the amount of painkillers I needed. I was a bit delusional too because of lack of sleep and pain. I told my mom, “Okay, we’re leaving because they’re not helping, they’re not doing anything.” Eventually, my mom was able to get someone from anesthesia, an anesthesiologist, to try to help me with the pain.

There’s always this type of situation. It was never very smooth. If it was, there was just one time it was good in the ER, but when I went to the floor, it was a disaster. Other times it’s the opposite way around. It was just difficult to go through the medical system in that case.

Early signs as a baby and port, surgery, chemo, and radiation

That’s what my mom would say. They would say that I kept rocking myself, throwing myself on my back, and the doctor said that was my way of trying to relieve the pain from the tumor.

I had my port installed first. My port was actually under my armpit instead of on my chest by accident. Then I’m not sure what happened first, either chemo or surgery. I believe it was surgery first, and then chemo, and then radiation.

No recurrence, just monitoring.

Self‑advocacy, mental health, and healing from childhood cancer

I think I’d like to say how important it is to try to advocate for yourself, because I always thought, “Okay, I’ll listen to the doctors,” but also, you know what’s best for you. You know your body the most.

In the mental health aspects, I’m seeing a therapist right now, but especially if you’re diagnosed at an early age, I would recommend, the earlier the better. I think I’m still trying to go through some of the trauma from my cancer journey when I was a kid, and also recognizing that it’s there, even though I thought I was just a kid and didn’t really notice until now.

I’ve learned from therapists that there’s someone else who was diagnosed at an early age, and they mentioned how they have some PTSD from sounds as well, but they were so young that they don’t really see or notice why. It lives through your body as the pain lives through your body. I think it’s very important, if you’re not going to therapy, to talk to someone you can relate to or do some exercise or something to help yourself.

Thank you for sharing your story, Maria!

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Planning Love and Life with Stage 4 Colorectal Cancer: Kayleigh’s Story

Post author By Chris Sanchez
Post date December 1, 2025
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December 1, 2025

Planning Love and Life with Stage 4 Colorectal Cancer: Kayleigh’s Story

Living with stage 4 colorectal cancer gives every moment extra weight, especially for Kayleigh, who received her diagnosis in May 2025. Her experience began with blood in her stool and an immediate call to her doctor with pictures, leading to a complex healthcare journey that included referrals, waitlists, and repeated self-advocacy. Kayleigh’s colorectal cancer diagnosis changed her life’s trajectory, but her determination kept her moving forward, especially as she and her fiancé planned their wedding amid ongoing treatment.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Despite the demands of her colorectal cancer treatments, namely, chemotherapy, chemoradiation, and planned surgeries, Kayleigh’s spirit shines through. Side effects, like neuropathy and fatigue, presented real challenges, but wedding preparations and physical activity became her anchors. She openly shares how her mental health was tested by uncertainty and waiting, emphasizing the importance of finding support and honest communication with loved ones.

Navigating the twists of treatment, Kayleigh remains steadfast in advocating for herself. She presses for appointments, asks questions, and ensures that her voice is heard in a system that can be prone to delays. She highlights how looking “healthy” can mask profound struggle and how learning to accept help, slow down, and savor small moments fueled her resilience.

Kayleigh’s journey underscores that doing everything “right,” from diet and exercise to visiting the doctor regularly, doesn’t render anyone immune to cancer. Sharing her perspective, she reminds patients that no experience is typical, treatment doesn’t always mean isolation, and self-advocacy is essential for progress. Her hope rests in her care team’s curative intent and her own ability to adapt, accept, and keep living meaningfully.

Watch Kayleigh’s video and scroll through her edited interview transcript to learn more about how:

Self-advocacy is essential: Patients must speak up and push for timely care when symptoms don’t resolve
Maintaining life milestones (like wedding planning) can be empowering, even during intensive treatment
Cancer often doesn’t “look” how others expect. Challenges are frequently invisible
Support from loved ones makes vulnerability easier and provides strength
It’s important to trust your instincts and accept support; transformation comes from learning persistence, self-compassion, and empowerment through advocacy

Name: Kayleigh G-P.
Diagnosis:
- Colorectal Cancer
Staging:
- Stage 4
Age at Diagnosis:
- 33
Symptoms:
- Blood and mucus in stool
- Increased frequency and urgency of bowel movements
- Small bowel movements
Treatments:
- Chemotherapy
- Chemoradiation
- Surgeries (planned): lower anterior resection, lobectomy

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of Kayleigh’s Interview

Hi, I'm Kayleigh
My first colorectal cancer symptoms
I persisted in the face of diagnostic delays
I took the initiative as a patient
Finally getting a colonoscopy and an initial diagnosis
My treatment approach and plan
I’m coping with side effects and protecting my mental health
Key lessons I’ve learned
Self-advocacy and what keeps me going
My advice for others

Hi, I’m Kayleigh

I was diagnosed with stage four colorectal cancer. That was in May 2025. I’m from Vancouver, BC. My symptoms started in 2024, and I was diagnosed in 2025.

Getting married is the be-all and end-all for my fiancé and me: to have this chapter come to a close and to start our new life together. I’m a little crazy for keeping the wedding date as is because it’s very close, it’s in April of next year. We’re six months away now.

I’m finishing treatment in January and may have two surgeries back-to-back before the wedding. This is the one thing I’m not willing to let go of and not let cancer take away from me.

It’s extremely important to have moments, like the wedding, that cancer cannot take away. It’s given me a new perspective on life. I’m learning to slow down and appreciate the little things.

Wedding planning is my only distraction right now. Between that and working out, which I haven’t been able to do since radiation due to side effects and skin irritation, planning is my only way to keep focused.

I think some of our engagement photos are my favorites. There are also some photos in which my family visited BC; those are my favorite memories to look back on because they are so happy, and I love showing them around BC and trying to convince them all to move out here.

My first colorectal cancer symptoms

The start of my journey is not typical. It began with just one symptom, blood in the stool one day. I took a photo for my doctor and called right away: “There’s blood in my stool. I need to see you.” This was very out of the norm for my body.

My doctor thought it was hemorrhoids and ordered blood work. My ferritin was low, so we did another blood test in two months, and it was still low. I asked for a FIT test since my main symptom was blood in the stool, which came back positive. Surprisingly, I wasn’t offered a colonoscopy right away. I did research and found that a positive FIT test qualifies you for a colonoscopy, so I asked my doctor to put in the referral. I requested a female doctor since my fiancé was leaving for a month and I didn’t want to be uncomfortable.

Unfortunately, the referral went to a doctor no longer doing colonoscopies and was nine months behind. We discovered this three months later after following up with no response. Another referral was put in, marked “semi-urgent” since it was now March. After waiting a month, I still hadn’t heard back. By April, my symptoms were ramping up: blood in stool every other week, then weekly.

The symptoms weren’t a large amount. I thought maybe it was IBS or colitis. Never considered cancer. My naturopath also said it was likely hemorrhoids. When I finally saw a surgeon, I explained my symptoms and how they were affecting my mental health, asking to expedite the referral. The surgeon wasn’t concerned, thought nothing would be found, and declined to see the photos I offered. He said, “You’re young, healthy, I don’t think we’ll find anything, but we’ll do the colonoscopy due to blood and mucus.” He quickly ate his words.

I persisted in the face of diagnostic delays

The delay was from October 2024 to the end of May 2025. My mental health deteriorated during this time. For six months, not knowing what was wrong was the hardest part. Constantly searching online and on ChatGPT, trying to figure out what it could be, became my focus. I talked about it all the time with my fiancé; I spent so much time Googling, trying to find answers because I wasn’t getting any.

My fiancé has been my rock throughout this. We’re an open book, although topics like stool were hard to discuss at first. I had to get used to being vulnerable and talking about it all the time. He made it easier and was so amazing and understanding; he made the whole process more bearable.

I’d visit my GP multiple times to update symptoms. I wanted everything in my record and took time off work for appointments. I emailed the surgeon’s office, feeling I had to take matters into my own hands. I called hospitals and made sure I was on cancellation lists for faster appointments with hospitals, MRIs, and CT scans, ensuring my name didn’t get lost.

I took the initiative as a patient

Early on, as I mentioned, I acted quickly when symptoms appeared; I didn’t wait. I’m very health-conscious and have health anxiety, so I put the process in motion immediately. Despite rapid action, it was still stage 4.

ChatGPT was a saving grace for my mental health. Even ChatGPT suggested ulcerative colitis, not cancer, which actually put me at ease for a while. Whenever I have questions, I ask ChatGPT and take answers with a grain of salt, using it to calm my mind until I’m able to ask my doctors.

Finally getting a colonoscopy and an initial diagnosis

After months of delays, I got the colonoscopy, and the doctor had been convinced nothing would be found. During the procedure, I overheard the word biopsy and saw something on the screen, making it real. The full realization hit when we got the biopsy results on my mom’s birthday: It was cancer. That day was really emotional.

For a while, we didn’t know the stage. Only recently, it was confirmed as stage 4 due to a nodule in my right lung that couldn’t be biopsied. A recent CT scan showed the nodule had shrunk, confirming stage 4, but with positive news, it had decreased by more than half.

My fiancé was beside himself, but quieter and more internal. He wanted to leave space for me to be emotional, to be there for me rather than show his own emotions. He’s been amazing, and now he shares his feelings too, though he tries to support me first.

My treatment approach and plan

My treatment plan is TNT, total neoadjuvant therapy, all chemo upfront in a sandwich approach. Six rounds of one chemo drug combination; three rounds, then chemoradiation, then three more rounds.

Surgery is planned for the main tumor and the lung. I’m considered oligometastatic, so they’re treating me with curative intent. I’m grateful to be in the best-case scenario of stage 4.

The latest CT scan showed liver spots, which may be due to different CT machines; if they are metastases, things could be more complicated. The doctor isn’t worried, since everything else is shrinking. My tumor, lymph nodes, and lung nodule have shrunk dramatically, indicating chemosensitive cancer.

If the tumor remains after chemo, and I’m eligible, I’ll have a large surgery, lower anterior resection and lung lobectomy, early next year.

I’m coping with side effects and protecting my mental health

I’m fortunate radiation was harder than chemo; the pain was intense, but chemo is more manageable. I get neuropathy that fades in a week, first bite syndrome, and cold sensitivity that resolves. I can still work out, run, walk, and go to the gym. The fatigue is manageable; I’m tired and take more naps, but it’s tolerable.

Working out and running are critical for my mental health. Every day is more livable if I exercise. Walking, talking with my fiancé, journaling, reading cancer books, and meditation help me stay grounded. Sometimes I focus on wedding planning to distract myself.

I stay on top of appointments and procedures. If my doctor wants me to have an MRI or CT and I haven’t heard back, I call after a reasonable time. I don’t just rely on the system; gentle reminders and ensuring I’m on cancellation lists keep things moving, especially with a wedding deadline.

Key lessons I’ve learned

The biggest lesson is that you never know what others are experiencing based on how they look.

When people see me, they say I look great, but it’s a misconception; I may feel terrible inside. You can do everything right, eat healthy, exercise, avoid alcohol, and have no family history, and still end up here. Sometimes, it’s just luck or the environment.

What’s holding me together is knowing my team is treating me with curative intent. I’m holding on to that as my silver lining. I’m doing everything within my control to give myself the best chance: staying active, being an advocate.

Self-advocacy and what keeps me going

Self-advocacy is crucial. You are your own best advocate and have your best interest in mind; don’t leave it to others. Take action to help yourself, nourish your mind, and avoid spiraling.

Speak up, ask questions, and be a respectful thorn in the system. You matter, and you need to do everything you can to make sure things move forward.

Looking forward to my wedding keeps me going. It’s a goal at the end of this journey, a source of joy in chaotic, emotional times. The emotional roller coaster is tempered by focusing on things that bring happiness.

My advice for others

Take things into your own hands. Remember, you have your best intentions in mind and advocate for yourself. If something doesn’t seem right, speak up. Be a thorn in the system’s side (respectfully).

Your life matters. Do everything you can to push things along if they’re not going as you hoped.

Chemo and radiation can be manageable. You can still live a daily life, see friends, exercise, and enjoy yourself. Treatment doesn’t take everything away. Everyone experiences and reacts to treatment differently. I thought I’d be debilitated, but I have been able to do more than expected.

It doesn’t take everything away from you. Everyone’s different.

Thank you for sharing your story, Kayleigh!

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Life Changed Overnight: Rylie’s Experience with Stage 4 Colorectal Cancer

Post author By Chris Sanchez
Post date November 23, 2025
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November 23, 2025

Life Changed Overnight: Rylie’s Experience with Stage 4 Colorectal Cancer

Rylie is someone whose life has always revolved around her family, home projects, and being outdoors. She enjoys gardening with her mom, cycling with her fiancé, and caring for her chickens and dogs. In April 2025, the joys of that routine were interrupted when persistent abdominal pain and bloating kept sending her back to the ER, where she was told it was constipation. Trusting her intuition and refusing to ignore what her body was telling her, she pushed for answers. That persistence led to the discovery of a mass and a diagnosis of stage 4 colorectal cancer.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez & Jeff Forslund

Rylie had to have emergency surgery. Her surgical treatment was extensive, involving the removal of a tumor in her colon, a liver mass, and parts of her small intestine. She also received an ostomy, which she had reversed.

Her cancer treatment involved chemotherapy, immunotherapy, and targeted therapy, but not before Rylie underwent fertility preservation, a major decision made quickly after surgery. Her care team involved multiple institutions, and she and her family sought out the best specialists for her treatment.

Throughout her experience, Rylie relied deeply on her faith and the support of her family, especially her mother, who she describes as her role model. She openly shares the emotional challenges of postponing her wedding plans and adjusting to physical changes, but remains grateful for the unwavering support of her fiancé and family.

Rylie encourages patients to advocate for themselves and stresses how important it is to connect with others facing similar diagnoses. Her experience exemplifies the importance of self-advocacy and persistence when navigating symptoms that don’t fit typical expectations.

Rylie’s story is a testament to transformation, from shock and fear after diagnosis to hope and empowerment with treatment and community support. Her experience offers vital lessons for young adults and others about listening to their bodies, seeking quality care, and approaching cancer treatment with resilience and faith.

Watch Rylie’s video above and read through her edited transcript below to learn more about how:

Early symptoms may be misunderstood or misdiagnosed; trusting your own body and seeking persistent evaluation is crucial
Cancer treatment affects every part of life, including the physical, emotional, and relational parts, and requires strong support systems
Fertility preservation is an important consideration, even amid urgent cancer treatment
Seeking second opinions and specialized care can significantly improve treatment experience and outcomes
You know your body best. Advocate for yourself, no matter what

Name: Rylie T.
Diagnosis:
- Colorectal Cancer
Staging:
- Stage 4
Age at Diagnosis:
- 27
Symptoms:
- Sharp lower abdominal pain
- Severe bloating
- Fecal impaction
Treatments:
- Surgeries: colon, liver, and small intestine tumor resection; ostomy surgery; ostomy reversal surgery
- Chemotherapy
- Immunotherapy
- Targeted therapy: monoclonal antibody
- Fertility conservation treatments

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.

Transcript of Rylie’s Interview

My name is Rylie
How we navigate cancer as young adults and a couple
My first symptoms: when things felt off
Advocating for myself and the challenge of getting diagnosed
My reaction to my stage 4 colon cancer diagnosis
I had emergency surgery
Living with an ostomy
Finding the right care team
What my treatment has looked like
My treatments, including fertility treatment, and their side effects
Scans, communication, and no evidence of disease
Hope and faith through cancer
Support from the colorectal cancer community
What I want others to know

My name is Rylie

My name is Rylie. I was diagnosed with stage 4 colon cancer in April 2025.

Family is my main priority. I love being with my family and spending time with them.

I got engaged two years ago. We were supposed to have our wedding in June, but that was derailed. We’re now planning for this next June.

My fiancé is my best friend. We love doing house projects together. We have chickens and two dogs. I enjoy working in the garden. I also like road cycling and am just an outdoorsy person, so I love being outside.

I wouldn’t have been able to get through this without my mom or my dad. They’re my number one supporters and have been with me every step of the way. My mom is my role model. She loves the outdoors and flowers. I try to mimic what she does, but I’m the little version of her.

How we navigate cancer as young adults and a couple

It’s been tough. It was a life-changing experience for both of us.

We used to be active every single day, but with me in the hospital for ten days at a time, my fiancé has had to support me and put house projects on hold. Pushing the wedding back was sad because we put so much work into planning, and we thought 2025 would be the happiest year of our lives, but it ended up being the worst.

Still, it’s awesome that he stuck by my side through it all. Our lives have completely changed, but we are committed to each other, and that will never change. My body completely changed, and he still loves me for who I am, and I’m so grateful for that.

After our wedding, I thought we’d have a child right away. Being a mom is all I want in life. We’ll eventually get there. Luckily, I had fertility treatments and got my eggs frozen.

My first symptoms: when things felt off

It all started in October 2024. I went to the emergency room with severe lower left abdominal pain and bloating; something just didn’t feel right. The ER staff said I was backed up and sent me home. I accepted that explanation for a while. Six months later, the pain got worse. Over three to four ER visits, I was eventually admitted.

Before the final ER visit, I saw my family doctor because I had a fever for a week and felt unwell at work. She did a check-up, but said I was just backed up. That weekend, I went to the ER three times. Two of those times, I was sent home with pills, but the third time, they kept me, saying I might have a small perforation in my bowel. I stayed for seven days and couldn’t eat or drink. When my belly went down a little, they hoped the perforation would heal on its own and sent me home.

That Sunday night, I told my fiancé something was very wrong, and he rushed me to the ER. That CT scan was totally different and showed a mass in my bowel and a mass on my liver. They rushed me into emergency surgery that night. Everything happened so fast; I had zero time to process anything.

The main symptoms were sharp pain in my lower left abdomen, severe bloating, and being backed up. I struggled to go to the bathroom, and even when I could, it wasn’t much. Those symptoms just continued to worsen.

Advocating for myself and the challenge of getting diagnosed

It was crazy… You know your body best. Doctors can run scans and tell you things, but only you know how you’re actually feeling.

I knew something was wrong. Being sent home with a diagnosis of constipation was embarrassing. I was raised with two brothers; I was built to be tough. Still, it was demoralizing.

I had several CT scans. The doctor said that it’s actually easier to read CT scans for a heavier person because their intestines are more spread out, but I have a smaller frame, so everything is squished together. All the scans showed I was backed up, but they couldn’t see underneath the congestion.

My reaction to my stage 4 colon cancer diagnosis

Originally, when they performed a biopsy on my liver after seeing a mass, it came back as scar tissue. One doctor said, “If there’s a mass on the liver, it’s stage 4 colon cancer.” He called it from the start.

The biopsy showed scar tissue, which was strange. They suspect it was a false negative, or it may have been a different mass. Other than that, no one mentioned “cancer” until a few days later, after more tests.

I was in complete shock. I asked doctors not to share results until my parents were with me. When he said stage 4 colon cancer, the first thing I thought was, “I’m going to die.” Everyone was in shock.

I had emergency surgery

For the emergency surgery, they sliced me from my sternum down to my pelvic area. They took out the tumor on my colon and removed a mass from my liver and parts of my small intestine. They also gave me an ostomy, which was a huge life change. It’s something I’ll never fully get used to.

I still have my ostomy, but am having it reversed on November 18th. I cannot wait to have my body back.

Living with an ostomy

It’s wild to see something on my stomach and learn that it’s my bowel. I’m grateful because it saved my life, but I don’t like it and hate it.

I feel bad saying that because it did save my life. I had a great nurse who taught me how to take care of it. I couldn’t wear the same clothes; I had to wear baggier clothes to hide it. I’m very self-conscious, so it was hard not being proud of it, but I got semi-used to it and am happy I’ll get a reversal soon.

A doctor was honest with me and said some people never get used to an ostomy. For some, it’s okay, but it’s not my lifestyle. I’m thankful for honesty.

Finding the right care team

My surgeon was amazing, and the nurses at UPMC West Shore were great. We met an oncologist there, but we wanted the best care possible, regardless of cost. We contacted several cancer centers, and Memorial Sloan-Kettering resonated most; they’re in the top two in the nation.

Their team was easy to reach and supportive, unlike the original oncologist team, which lacked good bedside manner. Bedside manner is critical, as I want to feel cared for.

Don’t be afraid to reach out to multiple cancer centers and get a second opinion. Memorial Sloan-Kettering was our first choice because of its track record. Doing this research is a lot of work, and my family was an incredible support team. I couldn’t have done it without them.

Traveling to Memorial Sloan-Kettering takes 2.5 hours; I’d go every other week for infusions. It’s a whole day affair. It’s worth it, and not too bad.

What my treatment has looked like

My treatment included chemotherapy and targeted therapy with panitumumab. Memorial Sloan-Kettering called it immunotherapy, but technically it was targeted therapy.

The targeted therapy changed my cells to kill bad cells. I received chemotherapy every other week. I just finished my last pump today.

For each cycle, I’d have an infusion for about 2.5 hours, then go home with a pump for two days.

My treatments, including fertility treatment, and their side effects

The beginning was rough because after surgery, I immediately started physically overwhelming fertility treatments, four shots a day and no time to heal.

Two days after surgery, the team asked if I wanted to preserve my eggs. I had zero time to process what that meant. After hospitals explained it, I started shots for fertility treatments right after discharge, four shots a day for two weeks. The extraction yielded 40 eggs, with 36 viable. It was rough but worth it.

And then after egg extraction (Monday), I started chemotherapy (Wednesday). My body was still in recovery mode, and the first infusion landed me in the hospital because it caused severe pain. My ovaries were enlarged, causing pressure on my urinary tract, and a mass was pulled out, which was benign.

The first two treatments were rough due to back-up and pain, but after that, the treatment went well. I had some tiredness and a facial rash, but it was manageable overall.

Scans, communication, and no evidence of disease

Two weeks ago, we were in a different emotional space due to miscommunication between surgery and cancer treatment. I had a scan, and the oncologist said the masses on my ovaries were shrinking. That was news to us.

After investigating, we learned these were cysts from fertility treatments, not cancer.

After an MRI and a CT scan, the team scheduled liver resection and ostomy reversal, and afterward, I’ll be in remission.

Hope and faith through cancer

I leaned heavily into my faith this year. God is the one who got me through this. He tested my strength but rewarded me in the end.

Without faith and my parents, I couldn’t have made it.

I try not to use the word “hope.” I want to be positive and manifest certainty that this isn’t coming back.

Support from the colorectal cancer community

It was hard to accept having cancer or an ostomy, so I avoided reaching out or telling people.

My mom sent me an article about a young woman going through the same thing: stage 3 colorectal cancer, has an ostomy, and runs marathons. I reached out. We quickly became best friends.

It made a huge difference to have someone who understands. I can always talk to my parents, but only she truly gets it.

What I want others to know

At first, I didn’t want to relive my journey, but I realized how important it is for young people to hear this. Colorectal cancer is often seen as an older person’s disease, but young people should still advocate for themselves.

I never would have been given a colonoscopy at 27, but if you have concerning symptoms, pay for the colonoscopy. It’s your life.

Lastly, you know your body best. Always advocate for yourself, no matter what.

Thank you for sharing your story, Rylie!

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How Faith and Family Keep Jackson Going Amid Stage 4 Colon Cancer

Post author By Katrina Villareal
Post date September 22, 2025
No Comments on How Faith and Family Keep Jackson Going Amid Stage 4 Colon Cancer

September 22, 2025

How Faith and Family Keep Jackson Going Amid Stage 4 Colon Cancer

When Jackson was diagnosed with stage 4 colon cancer with BRAF mutation at 27 years old, life flipped upside down in ways he never saw coming. A former college athlete, outdoorsman, Brazilian jiu-jitsu practitioner, and self-proclaimed extrovert, Jackson was the last person anyone expected to face a stage 4 cancer diagnosis. But looking back, the signs were there. He just didn’t realize how serious they were.

Interviewed by: Carly Knowlton
Edited by: Katrina Villareal

Jackson had been experiencing stomach issues and hemorrhoids for years, so even when he noticed thinning stool and blood, he brushed it off. That changed quickly when severe stomach pain and projectile vomiting landed him in the emergency room. Scans revealed a tumor in his colon and more than 40 tumors in his liver. Later, genetic testing confirmed that he had a rare BRAF mutation, present in only about 8% of colorectal cancer patients.

Understandably, the news hit hard. Jackson recalls the mental toll in those first few weeks, including the panic attacks, the anxiety, and the numbness. But what changed everything was a spiritual experience after reading Matthew 6:34 with his wife during a moment of deep fear and uncertainty. He describes feeling what he could only call a divine embrace, a peace that replaced panic, and a clarity that gave him purpose.

That spiritual moment became a turning point. Jackson began embracing each day without obsessing over the future. His mental health improved, his faith deepened, and his perspective on life transformed. He’s started a weekly Bible study, watched close friends get baptized, and even launched The 3929 Foundation to raise awareness, fund research, and provide financial assistance for those impacted by cancer.

While stage 4 colon cancer with BRAF mutation is a daunting diagnosis, Jackson hasn’t let it define him. He continues to work full-time, train, fish, and golf. He’s even recovered from colostomy reversal surgery and is eyeing a return to jiu-jitsu. Although he’s undergone intensive chemotherapy and faces ongoing tumors, including recent ones found on his peritoneal wall, he remains hopeful. His oncologists are amazed at his positive response to treatment, with nearly 90% of liver tumors now undetectable.

Through it all, Jackson advocates for others to listen to their bodies, get multiple medical opinions, and not hesitate to push for testing. He credits his wife, family, and faith for keeping him grounded. He’s not just surviving. He’s living fully, with a mission to educate, uplift, and inspire.

Watch Jackson’s video or read the transcript of his interview to find out more about his story:

Why Jackson says being diagnosed with stage 4 colon cancer with BRAF mutation may have been the wake-up call he didn’t know he needed
The emotional moment at his kitchen table that reshaped his entire outlook on life
How his wife, family, and friends became his loudest advocates, and why that made all the difference
The surprising reason he’s grateful to be the one facing cancer, not someone he loves
What changed after Jackson focused on today instead of fearing tomorrow, including the Bible verse that grounded him

Name: Jackson L.
Age at Diagnosis:
- 27
Diagnosis:
- Colon Cancer
Staging:
- Stage 4
Mutation:
- BRAF
Symptoms:
- Severe stomach pain
- Fatigue
- Lack of motivation
- Anemia
- Blood in stool
- Thinning stool
Treatments:
- Surgeries: emergency bowel obstruction surgery with temporary colostomy (to discuss the possibility of HIPEC in 2026)
- Chemotherapy
- Immunotherapy

Jackson L. stage 4 colon cancer with BRAF mutation

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.

Table of Contents

Hi, I’m Jackson
When I first knew something was wrong
I wanted a second opinion
When I got the news “you have cancer”
I had surgery right after I was diagnosed
The plan moving forward
I changed my diet
How my diagnosis has impacted me mentally
I had my colostomy bag removed
The hardest part of my journey
I grew in my faith
How I’m supporting others with cancer
I have a new outlook on life
What I want others to know

Hi, I’m Jackson

I’m from Kansas City. I got diagnosed on January 11, 2025, at the age of 27.

I’m a big outdoors person, so I do a lot of hunting, fishing, and farm work at my farm. I love spending time with my wife. I’m also a purple belt and trained in Brazilian jiu-jitsu, so that’s something that I’m very passionate about as well. I love spending time with my family and our three animals.

My friends would describe me as very outgoing, talkative, and energetic. Hopefully, they’d say I’m selfless. I like to do things for other people.

When I first knew something was wrong

I ignored a lot of them as they came through. I’ve always had stomach issues for a very long time, all the way back to high school and through college. I was always told that it was acid reflux or GERD (gastroesophageal reflux disease), or that I’ve got IBS (irritable bowel syndrome) or something like that.

Over the course of 2024, I started to see my stool thinning and had blood in it, but I didn’t realize it at the time. I’ve always dealt with hemorrhoids for a long time, so I thought it was just that.

The crazy thing is that my sister is an oncology nurse, so I would talk to her about it, ask her, and send her pictures to know if that was okay. She didn’t think anything of it either because I was healthy, a college athlete, and ate right. We thought it was something with my stomach.

Then I started feeling very fatigued and lethargic throughout the year. I didn’t feel motivated to go to the gym when I used to go every single morning and train in jiu-jitsu at night. That started fading away a little bit.

I would say that would probably be the anemia, which I didn’t realize at the time. I was very pale and even when I would go to the lake every week with my parents and out in the sun, I still was not getting a tan or any color. When I had to go to the hospital, I was starting to get tired all the time and grumpy. I was starting to notice the blood in my stool and that’s when I started freaking out a little bit.

At about that time, within a week, I was in the hospital from extreme stomach pain and I was projectile vomiting. They told me I needed to get a scan and go to the ER, and that’s when they told me they saw what they thought was a tumor. I officially got diagnosed the day after that, when I got transferred to the University of Kansas Hospital.

We thought it was appendicitis or some infection. Never in a million years would I have thought it was stage 4 colon cancer. What was wild is that he walked out and said, “There’s a big tumor in your colon, and we found spots all over your liver.” When I officially got diagnosed at KU, they told me that I had stage 4 colon cancer. I had a complete bowel blockage, so I couldn’t go to the bathroom and had to get emergency surgery. They stopped counting after finding 40 tumors on my liver.

I wanted a second opinion

In March 2025, I got a second opinion at MD Anderson. I also have a rare mutation, the BRAF mutation, which is only in about 8% of colon cancer patients. I asked my oncologist and he said, “We’ll never be able to tell you how long you’ve had this or when you got it.” The interesting thing is, when I went to MD Anderson, I asked the oncologist there, and he and his team said that they would be shocked if I had it longer than a year.

They told me that in their opinion, they thought that it turned on and spread like wildfire within a year, which honestly would make sense to me because I started getting those symptoms, the fatigue and the actual blood in stool, within that year, so it would make sense to me that I’ve maybe only had it a year. But I thought that it couldn’t be out of the realm of possibility, with all the stomach issues I’ve had, that maybe I’ve had it for five to 10 years and then it slowly grew.

Education is probably one of the most important things. I feel like it’s one of my callings and the reason I’m going through this is to help bring awareness and raise awareness about the signs and symptoms of colon cancer. One of the most rewarding things that has happened is that since I got diagnosed was I probably have had over 50 people who I either know or who I have never met in my life from across the country reach out to me and told me that because of my story and everything that I’ve shared, they’ve gotten checked out and have gotten colonoscopies or gotten them scheduled or gotten tests.

There was a kid a few years younger than me who I knew from high school, and he messaged me and said, “I know you don’t know me too well. I was younger than you on the baseball team, but because of your story, I was able to get a colonoscopy set up. I’ve had stomach issues forever. Luckily, nothing came back from it.” I’ve had dozens and dozens of people tell me that and share that with me, which is literally the most important thing to me. That’s why I started this foundation, partially to help people with financial assistance who are going through cancer and everything, but the main reason is to help raise awareness and provide resources for people to get education about it because it’s not talked about enough.

Now it’s going to be the number one cause of death and cancer in people under 50 in men and women, behind breast cancer, and it’s never talked about. You see more younger people getting diagnosed with it and at a late stage, and nobody can tell us why. That’s the biggest thing for me. Part of our mission is to help get people connected with educational resources and actual care teams willing and able to help provide that.

When I got the news “you have cancer”

It still feels like it was yesterday. I was sitting in the emergency room with a screen in front of me and it was in the middle of one of the biggest snowstorms we’ve had in Kansas. My wife was at home. My parents’ house was not too far from the hospital I was at, so they drove to meet me there. When he told me, I sat there and didn’t know what to say or how to respond, to be honest. I sat with a blank stare on my face.

Then I called my wife and she started freaking out. She drove to the hospital and stayed the night before I got transferred. I felt super sick to my stomach. I didn’t know how to process it. My mom had breast cancer when I was very young. She’s 17 years clear, so she’s been doing great, but she felt just as sick, knowing that she has to watch me go through this now after she had to.

At that time, I was numb. Then, when I got the surgery and was recovering, I was trying to be optimistic and not be mad at the world. But then I started having a lot of panic attacks and anxiety attacks. Through my faith and the people I have, I’ve been able to overcome that. I’m probably too optimistic at this point, when I was told I got two years to live. A lot of people tell me they would have never guessed, with my energy levels and how I act and respond, that I was diagnosed with stage 4 colon cancer. But that’s a compliment because that’s how I want to live. I know people who are in the situation that are mad at the world and pessimistic and whatnot, and that’s not how I want to live.

My sister was working on the oncology floor of the University of Kansas Hospital. She worked there for three years. At the time, she was working at Mass General Hospital because her boyfriend and my future brother-in-law was a resident doctor at Mass General. Now they’re in New York City and both working at Mount Sinai. She’s working as a clinical research coordinator in oncology, and he’s a cardiology fellow. At the time, she was not, but a lot of her friends and connections were still there, and I’m very lucky because of that.

Her boyfriend had a friend who was working in the emergency room that day and was able to pull some strings and usher me back pretty quickly. By the time I got back, I had two doctors waiting for me, which never happens. They did some tests and were talking about doing scans. They immediately took me up to that cancer unit, and I was treated with the best care I could have ever asked for.

I’m still close with all those nurses up there. I keep in touch with them all the time. I just had my colostomy reversal surgery two weeks ago and I was getting wheeled up there to hang out with them and talk to them because I care about them deeply and they are amazing people. They are the best nurses in the world, in my opinion. They’re incredible.

I first went to urgent care and by the time I went, I was projectile vomiting and they said, “You need to go to the hospital,” so I had to drive myself while throwing up to the closest hospital and went to the emergency room. They did some blood tests and took me back for a CT scan. A couple of hours later, they told me they found what they believed were tumors but didn’t give me an official diagnosis.

I stayed overnight at that hospital. Their oncologist came down and told me that she believed that I had stage 4 colon cancer. At that point, there’s no other hospital. There’s only one option for me and that’s going to KU. They’re the best around here for that and one of the best in the country.

I had surgery right after I was diagnosed

My sister made calls and I had to discharge myself because they wouldn’t approve a transfer. My mom had to drive me over to KU and into the emergency room. I got admitted through there. That would have been on the 10th and the very next day, on the 11th, they officially diagnosed me. On Sunday, the 12th, that’s when they did surgery to remove the tumors and put in a temporary colostomy bag.

The plan moving forward

Recovery was not fun. On top of that, learning how to deal with a colostomy bag was a big challenge. Luckily, I have a brother who lives here and another brother who lives in Scottsdale, so he flew into town. My sister at Mass General, they gave her all the time off and said, “Go be with your brother,” so she flew in. She was like my second nurse. Her boyfriend was with me too. I was recovering for about a week and they said, “We typically don’t do this, but you need to start on chemotherapy as soon as possible.”

I started chemo three weeks post-op and finished my first round on my 28th birthday. I got discharged from the hospital a week after surgery. I believe a week or two after that was when I met my original oncologist. I’ve since switched to a new oncologist. I was thinking that they’ll say, “We’ve got a great chemo regimen. We’ll be able to get you past this. You’ll be good.” My oncologist looked me in the eye and told me that he doesn’t think I’ll live past two years. He straight up said, “You’d be lucky to live past two years with your mutation and how advanced your disease is.” Nope, I’m not accepting that.

I was with that oncologist for a little bit. I got a second opinion at MD Anderson. Unfortunately, they kind of told me the same thing. The only option for me was a BRAF-specific regimen and your only hope at living past three years. That hurt a little bit, as well as all the negativity around me. Everybody was telling me that I’ll be dead in two years and if I can live past that, I’ll be lucky.

But with this chemo regimen, doing a holistic approach of changing the way I eat, what I’m putting into my body, other supplements, and different types of alternative medicine, my oncologist estimated that about 90% of the disease on my liver is gone. With having more than 40 tumors originally, he’s mind-blown that I’ve had this good of a response to all the treatments and everything I’m doing so far.

Unfortunately, after the colostomy reversal, they found more tumors in my peritoneal wall. The response that I’ve been having to treatments and everything I’m doing has been very good so far. I continue to be optimistic about what I’m doing and think that eventually, I can get to no evidence of disease, against all odds that I’ve been given.

I changed my diet

When I talk to my colorectal surgeon and my new oncologist at KU, who’s incredible, I’ve asked multiple times, “Why are we getting this? Why are so many people getting colon cancer so advanced at such a young age?” He said, “We don’t know yet, but in my opinion and through a lot of research, it has to be environmentally-related to either the stuff that’s in our food supply,” like the chemicals that are getting sprayed, microplastics, all the additives and preservatives, or at least they think they could be a big factor into why so many young people are getting colon cancer, and it makes a lot of sense.

Ever since we’ve been kids, everything we’ve been eating has been pumped full of crap. They used to, at fast food restaurants, cook everything in beef tallow and now it’s all these different oils and other crap. The amount of stuff that is in our food is killing us and is being so harmful. My wife and I, as soon as I got home from the hospital, threw everything out of our pantry. We only order from Thrive Marketplace. We go to Sprouts and Whole Foods. We try to do everything organic. We started a garden at our house. Our neighbors have chickens and they give us their eggs. We try to do our best to know where our food is coming from and not get stuff that’s overly processed or has a bunch of stuff added to it. We’ve changed the way we eat for the most part. My wife falls off a little bit sometimes as she can’t help herself, but I’m very conscious now about what I put into my body.

I try to avoid a lot of gluten to reduce inflammation to fight against cancer. I take a lot of supplements, like B vitamin complex, vitamin C, vitamin E, milk thistle, turmeric, probiotics, and others. I’m trying to help my body fight this and I think a lot of it is contributing, outside of the chemotherapy and also helping me feel better from my chemo.

I urge everybody, whether you’re going through cancer or not, to change how you eat. Get all that crap out and fix it. That’s another goal of mine, too, which is to try to help people eat a lot better as well.

Getting multiple opinions is by far the best thing you can do. We’re still looking at options. We’ve got a friend who gets treated at Duke, and they do a lot of things with a HAI (hepatic artery infusion) pump for the liver. One of the best surgeons in the country is either at Mount Sinai or MSK who does HIPEC. In City of Hope and the Williams Cancer Institute in California, there are a bunch of places we look at to get opinions from because everybody has a different approach to how they do it, whether it’s traditional chemotherapy, repurposed medicine, alternative medicine, or whatever it is.

I’m open to anything to save my life and to get this out of my body. I’m not going to settle for what one person thinks. What’s great is that my new oncologist says, “I want you to get opinions from other places. If you need help getting those set up, let me know.” He’s not the type of person who says whatever he says goes. He wants me to get as many opinions as possible. If we can do it and they want to suggest something else, he says, “I’ll communicate with them and if we can do it here, I would love to. If not, get it done there.”

I’m glad I made the switch to him. He’s incredible. A lot of people don’t want to step on their doctor’s toes when in reality, it does not matter. It’s your health and your life. Do what you need to do. Do not settle for one person’s opinion. You have to see multiple people and get opinions from as many people as possible and find out different approaches as possible to see what may work and what may not. There are so many different treatment options outside of what your local or primary oncologist has or says.

My wife is the best advocate for that because sometimes I’m too scared because I don’t want to be mean or say something that I think is rude, my wife will say, “Why are you doing that? We should go look at that.” I tell her, “Thank you. I didn’t want to say it, so thank you.” She’s incredible at it. She’s not afraid to say what’s on her mind and to make sure that I’m getting the care I need.

I completed chemotherapy before my colostomy reversal. I was supposed to have another round, but one of the side effects of the regimen for my drug is a very bad skin rash on pretty much my entire body. It looks like I have painful acne, which it is. It has gotten so bad to the point where they couldn’t give me chemo because I had to see a dermatologist. Hopefully, I’ll get back on it, which will be my 16th round of chemo. For now, we keep doing it until it stops working. It depends on how long it can be effective for and then, eventually, we’ll look at other treatments. But so far, this chemo and everything I’ve been doing have been working out pretty well, so we’re not going to change course until it’s time.

With my chemo regimen, I was on a drug, oxaliplatin, Vectibix (panitumumab), and 5-FU, and then I take oral chemotherapy, so four different chemos. I take Braftovi (encorafenib) every single day, four pills of those. I am now off of oxaliplatin because it’s so toxic and has given me almost permanent neuropathy in my hands and feet, so I had to stop that after 10 rounds because it got so bad. Now I just do oral chemo every single day. Every 14 days, I go in for my immunotherapy infusion, which I get through my port, and then I get my 5-FU pump that I’ll have for 46 hours. I’ll usually go in every other Tuesday, get chemo, and then have my pump until Thursday, and then get unhooked on Thursday.

Every day, I take four pills in the morning for my oral chemo. Every 14 days, I was getting three hours’ worth of infusions. Now it’s just one and a 46-hour pump.

I take like 25 pills a day, which is wild. It looks like I have an 80-year-old man living with me with my weekly pills on the counter.

At first, I didn’t have time to think about it because I had so much going on with recovery and trying to figure out if we could find out about this disease and how to treat it, types of treatments, where to go, what to look for, etc.

How my diagnosis has impacted me mentally

After I got diagnosed, the first month or two were very rough on me mentally. But since then, I’ve been doing well, mentally and physically.

The chemo is not as harsh on me anymore now that I don’t take oxaliplatin, which is good. I go to work in the office every single day. My company has been great about giving me time off whenever I need it, but I’ve worked full-time through everything. I’ve been blessed with the company that I work for. They give me a lot of grace and a lot of opportunity to go to my appointments and chemotherapy, and to take days off if I’m not feeling well. Most times, I’m in the chemotherapy chair working, in meetings and stuff like that. I’ve never stopped working. I’ve been working the entire time, which has helped me a lot mentally to try to stay as normal as possible.

The colostomy bag reversal has helped me a lot in terms of my quality of life moving forward, which is great. Outside of neuropathy, I work out and I’m able to still hunt and do the things that I love to do. Without the bag now, I’m optimistic that I can get back to Brazilian jiu-jitsu training, which is one of my favorite things to do in life and helps me a lot mentally. It’s a big release for me. I’ve been able to golf through all of it. It hasn’t been too much of a difficult change besides what I’m allowed to eat or not eat. I don’t drink alcohol anymore, so that’s a big change. I feel a lot better not drinking, so that’s a good change for me.

The worst is sitting at home. The last two weeks, while recovering from surgery, I would ask my wife to go drive me around the neighborhood because I needed to get out of the house. I hate sitting at home and doing nothing for all hours of the day. She, on the other hand, can do that every single day. I can’t. I have to be up and talking to people, going and doing stuff. I still have staples in me, but I’ve been going to work, seeing people, and going to meetings. I try to live as normally as I can without any change as much as possible.

I had my colostomy bag removed

The bag reversal went well. Funny story, I was without pain meds after surgery for about 18 hours because they misplaced an epidural in me, so that wasn’t fun. But other than that, the recovery has been good so far. I’m up and moving around. I’m getting the staples out and I have a three-week follow-up, so it’s been great. I’m very blessed to be in this position to at least have this surgery.

All my cancer markers are still looking good, even with a break from chemo and having the surgery. I’m in a pretty good spot right now. I’m excited to get back on chemo and keep hacking away at the tumors. But as far as the reversal and everything, it’s gone very well so far.

They weren’t able to see the tumors and the peritoneal wall is very hard to see on scans. They could see something before, but we couldn’t tell if they were tumors or if it was scar tissue from my colostomy bag and the initial surgery. Unfortunately, when my doctor opened me up, he found four tumors right there, so he ended up taking four of them out, biopsying a couple, and then sending some off. He said those were definitely cancer. There could be more or there may not be. We don’t know how many are left in there.

The goal is to see on some PET scans coming up in September what we can try to find and the plan of attack is to continue what I’ve been doing as far as chemo and then look at HIPEC surgery potentially in 2026 to try to get all those out if we possibly can and continue to target the liver. My oncologist believed that with my scans from July that about 90% of my disease on my liver is either gone or dormant right now. My latest Signatera test came back as negative, so that’s good, meaning they’re stable and not active and spreading, so I’m very lucky for that.

The hardest part of my journey

The hardest moment was definitely the tail end of my hospital stay and then the first week at home, which is when it started hitting me that my life was changed forever. I was in a bad headspace and having very bad anxiety attacks and panic attacks. I was struggling.

I had a wild faith moment that changed everything for me following that, which is when everything changed for me and I was able to get rid of all of that anxiety, panic, and worry. Ever since then, I’ve been able to lean into that, my friendships, my family, and my wife. I was able to stay optimistic and faithful and keep moving forward and continue to focus on every single day. I used to get anxious thinking about the future. What is two months going to look like from now? What is a year from now going to look like? That gave me a lot of anxiety and worry. I now focus on every single day and not try to look too far ahead. I just enjoy what I have in front of me and not worry about what tomorrow is going to look like, so that’s helped me a lot.

I grew in my faith

I had a couple of friends who are college teammates of mine who flew into town after I got diagnosed. One of my friends and his wife brought me a new Bible and a new daily devotional, which was perfect. I have been asking and trying to get myself to hop back into my faith for a very long time. I was not happy with the person I was. It’s not like anything was super bad. I was empty and unfulfilled. I wasn’t happy with who I was and what I did. I used that as a good opportunity.

One day, I had a very bad panic attack and anxiety attack. The next morning, I sat down at the kitchen table with my wife and we opened up the devotional, and one of the verses in the devotional was Matthew 6:34. It was Jesus talking about anxiety and worry. He talked about why worry about tomorrow when tomorrow’s going to have its own troubles and today’s trouble is enough for today, so focus on today

I don’t know how to describe it other than this. In that exact moment, sitting with my wife at the table, I quite literally felt like a massive hug wrapped around me. It was crazy. I’ve never experienced anything like this in my life. The best way I can describe it is like a lake being perfectly flat and like glass. In that moment, I literally felt everything, all of the anxiety and worry, get pushed out of me. I was shaking and crying. It was the most overwhelming experience of my life.

I texted my friends. I looked at my wife Hannah and I said, “This is the craziest feeling ever.” At that moment, I have never in my life been more sure that God and Jesus are real, and that I’m going through this for a reason. The more I continued to think about it, I kept praying every single night, saying, “God, please do something in my life to bring me closer to you. Change my life and change my faith,” and then all of this happened.

I’m almost grateful that I got diagnosed with this because without this, none of this would have ever happened in my life. I feel like there are two reasons I’m going through this. One is to talk about my faith and the gospel. With that, I’ve started a weekly Bible study where I have six of my friends and two of them got baptized this year. That is the greatest thing for me. I was on a radio show talking about my diagnosis and I was able to share this story. That’s the first reason why I’m going through this is to grow in faith.

How I’m supporting others with cancer

The second thing is to be able to talk about colon cancer and raise awareness about it and legitimately try to save lives. We started The 3929 Foundation. The number 39 is for a family friend of mine, his name is Matt Fitzmorris. His dad, Al Fitzmorris, played for the Kansas City Royals and passed away from cancer in December, a few weeks before I got diagnosed. The number 29 was my number growing up throughout my entire life, so we decided to start this foundation.

We filed for our nonprofit 501(c)(3), so we’re waiting for that, but our goal for the foundation is to be able to help people and their families who are going through cancer by helping them financially. I know from experience. My chemo treatments every other week are $81,000. That’s how much it costs for my chemo every 14 days. $81,000, twice a month. Luckily, I have phenomenal insurance where it’s all after my deductible was hit in January, so it’s 100% paid for, so I’m very lucky. Otherwise, I’d probably have millions of dollars of medical debt.

We know how difficult it can be to make a payment on your mortgage or buy something for the house when you’ve got medical bills to pay, so that’s our priority. People can go to our website to apply for financial assistance. We’re also working on surprise donations to people at the KU Cancer Center, where I get treatments, to help them out.

We want to provide education and resources specifically about colon cancer to raise awareness. We formed the foundation in March and in May, we had a pickleball tournament and raised $15,000, which is super cool. We’ve got another event that’s more my style, which is trapshooting, that we’re doing on October 5th to raise money. We’re trying to do multiple events throughout the year. We’re starting to sell our merchandise on our website. We’re getting that all up and running.

I feel lucky and grateful that I’m going through this and able to help people. It’s crazy to me because I get told all the time by my friends and family, “I wish you didn’t have to go through this. I wish I were the one who got this and not you.” Absolutely not. I am grateful and lucky that I’m the one going through this because I wouldn’t be able to stand watching somebody I care about go through this. Watching somebody I cared about going through that would kill me, so I’m very glad that I’m the one who has it, because I know that I can deal with it and I’m strong enough to withstand it. I tell them, “Don’t ever say that. I’m glad I’m the one going through it and nobody else I know.”

I hope that I can help as many people as possible. I don’t know how long I will be here for. Hopefully, for a very long time. I hope that, however long I am here, I can help and impact as many people as I possibly can, so that’s what I’m here to do.

I have a new outlook on life

My perspective on everything in life has changed. It’s very wild. In a weird way, I needed this. I tell people all the time. I feel the best, but not necessarily physically. Sometimes I do, but mentally and spiritually, living with all these tumors and stage 4 cancer and all this going on, this is the best I’ve ever felt in my life. I genuinely mean that. It’s crazy for me to say that, but it’s true. I am so grateful that I’ve gotten this opportunity. Yes, it absolutely sucks. There’s a lot of stuff I can’t do anymore. Some days, chemo makes me want to feel like death might not be so bad, but I wouldn’t change anything about this.

What I want others to know

I was scared to go to the doctor, not because I was actually scared, but because I hated it. I thought it was pointless. Listen to your body. If you notice anything, pay attention to your body and to anything going on. If anything is different, go get checked out and see somebody. I would always push it off, no matter what it was, thinking that I didn’t need to go to the doctor and that it’d go away.

I often think about 2024. What if in July, when I started, I paid attention and cared about the things going on? If I noticed I was starting to feel fatigued and my stool was thinning, changing, and looking different, if I got checked out and they found something, maybe I wouldn’t have had a complete blockage. Maybe I wouldn’t have had 40 tumors on my liver. Maybe it would have been two and it would have been a lot different story. Maybe I would have been stage 2 or 3 instead of stage 4.

Listen to your body. If you feel like anything is off or wrong, don’t neglect it. Get checked because I was the exact opposite. Obviously, I regret it a little bit by not having myself checked earlier. Be aware of that. Take your body and your health seriously. Change the way you eat. Be conscious of what you’re putting into your body and how you’re treating it. Exercise as much as possible. Try to make a change in your life in a good way.

Thank you for sharing your story, Jackson!

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Colon Cancer at 36: How Crystal Faced Diagnosis and Found Connection

Post author By Chris Sanchez
Post date May 2, 2025
No Comments on Colon Cancer at 36: How Crystal Faced Diagnosis and Found Connection

May 2, 2025

Colon Cancer at 36: How Crystal Faced Diagnosis and Found Connection

Crystal’s account is a heartfelt narrative about confronting colon cancer, grappling with mental health, and letting in support.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

For years, Crystal noticed blood in her stool, but dismissed it as hemorrhoids. Fast forward to 2022, when symptoms she couldn’t shrug off, including excruciating abdominal pain and recurring urinary tract infections (UTIs), finally pushed her to seek medical help. A CT scan revealed something alarming — an abnormal mass intruding into her bladder. After several tests, the diagnosis was confirmed: colon cancer. The news, while devastating, wasn’t entirely shocking to Crystal, who had long neglected her health habits. Yet, the emotional weight of hearing, “You’ve got cancer,” hits differently, no matter how prepared one thinks one might be.

Getting on with life after a colon cancer diagnosis was far from easy. Crystal underwent surgeries to remove her bladder, right ovary, and uterus. She also endured the placement of both colostomy and urostomy bags. Adjusting to life afterward was daunting. The urostomy bag, in particular, brought anxiety about potential leaks in public, often triggering feelings of vulnerability and self-consciousness. However, Crystal realized that survival and quality of life trumped these fears.

Crystal’s mental health took significant hits throughout her experience with colon cancer, which weighed heavily on her. But it was during these dark times that she discovered the strength of her support system. Friends showed up, both emotionally and physically, breaking through the walls she had built around herself for years. She realized that accepting help wasn’t a sign of weakness but a testament to the deep connections she had with her loved ones.

Crystal’s story is a beacon for others facing similar challenges. She shares that while living with an ostomy bag can be tough, it’s not the end — it’s just another chapter. Her advice? Let people in, lean on your support system, and never underestimate the power of sharing your story.

Take a look at Crystal’s video to get into:

How she found strength after her devastating colon cancer diagnosis.
Why accepting help changed Crystal’s mental health for the better.
Living with a urostomy bag: her real talk on the challenges and triumphs.
The signs Crystal missed — could you recognize them?
From isolation to connection: How colon cancer reshaped her relationships.

Name:
- Crystal W.
Age at Diagnosis:
- 36
Diagnosis:
- Colon Cancer
Symptoms:
- Blood in stool
- Intermittent severe lower abdominal pain
- Urinary tract infection (UTI) with strong odor
- Fistula
Treatments:
- Surgeries: cystectomy, oophorectomy, hysterectomy
- 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.

Thank you for sharing your story, Crystal!

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Chloe’s Stage 3 Colon Cancer Story: It Started with Bloating

Post author By Chris Sanchez
Post date April 3, 2025
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April 3, 2025

Living Boldly After Stage 3 Colon Cancer: Chloe’s Empowering Message

In early 2024, Chloe was unexpectedly diagnosed with stage 3 colon cancer (adenocarcinoma of the colon) after suffering from symptoms of bloating and other stomach issues. Later on she began to experience weight loss, fatigue, lack of appetite, and abdominal swelling. However, these symptoms were dismissed as effects of her pre-existing anemia. She regularly consulted her general practitioner throughout December to have tests conducted. They only revealed minor infections but didn’t uncover the underlying issue. Moreover, her health continued to worsen.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Chloe paid a visit to the local infirmary, where doctors subsequently discovered and were concerned about high ketone levels in her urine. However, she was still treated for gastroenteritis. Her symptoms persisted, leading her mother to realize that her condition was far more severe than everyone thought and insist on a hospital visit. Significantly, a CT scan revealed a mass in her large bowel and multiple perforations. Doctors accordingly performed emergency surgery, and Chloe woke up afterward with a stoma bag, an unexpected and significant adjustment for her.

The diagnosis was shocking: Chloe’s condition was stage 3 colon cancer. Furthermore, these findings were exacerbated by a rare genetic disorder, familial adenomatous polyposis (FAP), which had gone undetected until that point. This gene caused polyps to clump together and form a large tumor. Following her surgery, Chloe subsequently underwent four rounds of chemotherapy over three months, with sessions involving both IV and oral forms of treatment. Thankfully, post-treatment scans showed no remaining cancer cells. By June 2024, Chloe was finally declared in remission.

Emotionally, Chloe found the process challenging. She consequently had to grapple with the stigma of having cancer as a young individual and adjust to life with a stoma. She concurrently navigated the mental health impacts of her stage 3 colon cancer and bloating, including PTSD and anxiety, around hospitals through counseling and support from loved ones.

Watch Chloe’s video to learn more about:

How to embrace a bolder outlook on life and seize opportunities that you may once have feared.
The importance of listening to your body.
Why it’s crucial for you to persist with medical inquiries if you suspect stage 3 colon cancer and bloating.
How to avoid letting feelings of embarrassment stop you from seeking help.

Name:
- Chloe W.
Age at Diagnosis:
- 25
Diagnosis:
- Colon Cancer (Adenocarcinoma of the Colon)
Staging:
- Stage 3
Symptoms:
- Severe abdominal bloating due to stage 3 colon cancer
- Weight loss
- Lack of appetite
- Fatigue
- Vomiting
- High ketone levels in urine
Treatments:
- Surgery
- Chemotherapy

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Thank you for sharing your story, Chloe!

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Early Testing Could Have Changed My Colorectal Cancer Story—Don’t Ignore the Signs

Post author By Chris Sanchez
Post date January 29, 2025
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January 29, 2025

Early Testing Could Have Changed My Colorectal Cancer Story—Don’t Ignore the Signs

Nicola is a mother and anesthetic technician who loves traveling and spending time with her dogs, cat, and 2 children. In 2020, doctors diagnosed her with colorectal cancer. By the end of 2021, she learned that her colorectal cancer had become stage 4 and had metastasized to her brain. After undergoing a craniotomy, she has been in remission for 9 months.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Initially, Nicola experienced rectal bleeding. Doctors thought it was nothing more than hemorrhoids, but eventually, they conducted a colonoscopy. The surgeon found a 4-cm tumor and performed surgery just before Christmas, and also discovered that 4 of her lymph nodes tested positive for cancer cells. She then underwent adjuvant chemotherapy, which is treatment to keep cancer from returning.

With no significant family history of cancer, although her father also had bowel cancer, Nicola’s case involved a non-BRAF, wild-type adenocarcinoma. Her chemotherapy initially made her very sick, leading to weight loss and hospitalization. Eventually, she switched treatments and completed 5 rounds before doctors declared her NED (No Evidence of Disease) for her stage 4 colorectal cancer.

Months later, Nicola began to experience symptoms such as profound migraines and vision changes. These led to the discovery of a large brain tumor; her original cancer had metastasized to her brain. She promptly underwent a craniotomy, which was deemed successful. Afterward, she received targeted radiation therapy, which thankfully did not significantly affect her vision.

Nicola remains under high-risk monitoring. She advocates for personal vigilance and early testing, sharing that she might have pushed for a colonoscopy sooner despite her age, had she known that younger people can get colorectal cancer. Now, she focuses on being present with her family and friends, and cherishes each day with gratitude.

Name:
- Nicola H.
Diagnosis:
- Colorectal cancer 2020
- brain cancer
Staging:
- Initial stage 3 in 2020
- Metastasized to her brain in 2021 (stage 4)
Initial Symptoms:
- Bleeding, pain (Colorectal cancer)
- Focal migraines (Brain cancer)
Treatments:
- Chemotherapy (Colorectal cancer)
- Radiation (Brain cancer)

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Thank you for sharing your story, Nicola!

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Rashawn’s Stage 1 Colorectal Cancer Story

Rashawn, a mother of 4 from Augusta, GA, is a 10-year stage 1 colorectal cancer survivor who celebrates her journey to health each year on April 28. Despite initial struggles, she maintains a 4.0 GPA while pursuing middle grade education after years away from school.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Rashawn’s cancer story began in 2014, when persistent fatigue and blood in her stool led her to seek medical attention. A colonoscopy revealed a golf-ball-sized mass in her colon, which was later confirmed as cancer. Determined to attend her son’s graduation, Rashawn underwent surgery within weeks, during which doctors removed a significant portion of her colon as well as a large number of lymph nodes. Recovery was challenging but marked by resilience, with support from her family.

Rashawn faced emotional and mental challenges post-diagnosis of stage 1 colorectal cancer, including confusion, fear, anger, being diagnosed with a different kind of cancer, and a lack of readily available resources for colon cancer patients. The absence of support groups and tailored education at the time left her feeling isolated. Over time, she developed strength through self-advocacy, faith, and a desire to help others. Rashawn emphasizes the importance of knowing one’s body and seeking prompt medical attention when something feels off, as delayed action can have severe consequences.

Today, Rashawn continues to manage her health vigilantly, undergoing regular screenings and addressing any concerns immediately. She attributes her survival to her proactive approach and strong support system, which included her mother, a breast cancer survivor, and her extended family. Despite lingering anxiety about recurrence, Rashawn finds purpose in sharing her story to raise awareness about colon cancer and empower others to prioritize their health.

Rashawn’s recovery journey also involved adapting to physical changes, such as altered taste buds and dietary habits. While challenges linger, she finds joy in helping others and living a life of gratitude. Rashawn practices her faith daily, expressing thanks and paying her blessings forward by assisting others. Her transformation into her best self over the last decade exemplifies resilience, faith, and purpose.

Rashawn advises others to trust their instincts, know their bodies, and seek timely medical care. By doing so, she believes more lives can be saved, and individuals can live fuller lives despite adversity.

Name:
- Rashawn M.
Diagnosis:
- Colorectal cancer
Staging:
- Stage 1
Age at Diagnosis:
- 37
Initial Symptoms:
- Extreme fatigue
- Blood in stool
Treatment:
- 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.

Thank you for sharing your story, Rashawn!

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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.

Thank you for sharing your story, Emily!

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Self-Advocacy Saved Sydney’s Life: Diagnosed with Stage 4 Colon Cancer

My name is Sydney

My early symptoms

My path to diagnosis: advocating for care

Receiving the colon cancer diagnosis and emergency surgery

Coping with the initial shock and chaos

Finding the right care team and second opinions

A look at my treatment

Managing my colon cancer treatments and side effects

Maintaining quality of life during colon cancer treatment

How to support someone with cancer

The importance of hope and doctor-patient communication

My final advice: finding community and moments of joy

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More Metastatic Colon Cancer Stories

“I’m Still Affected 25 Years Later”: Maria’s Experience with Kidney Cancer as a Child and Colon Cancer as a Young Adult

Hi, I’m Maria

New job and working as an educational assistant

Living with disability and wanting to support others

Childhood innocence and realizing life was different

Family silence, denial, and wanting more information

Learning the word “cancer” and truly understanding it as an adult

Denial, early colon cancer, and not being believed

ER experiences, advocacy, and pain

Early colon cancer removal and initial denial

G‑tube, long‑term pain, and waiting for help

Feeling like a burden and hearing my mother’s pain

Cancer camp, Young Adult Cancer programs, and therapy

Finding connection with other survivors

Bowel obstruction, polyps, and finally getting coordinated follow‑up

My thoughts on genetic testing and Wilms tumor features

My experiences at different ages and PTSD from procedures

Minimization of pain and struggles in the ER

Early signs as a baby and port, surgery, chemo, and radiation

Self‑advocacy, mental health, and healing from childhood cancer

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More Kidney Cancer Stories

Planning Love and Life with Stage 4 Colorectal Cancer: Kayleigh’s Story

Hi, I’m Kayleigh

My first colorectal cancer symptoms

I persisted in the face of diagnostic delays

I took the initiative as a patient

Finally getting a colonoscopy and an initial diagnosis

My treatment approach and plan

I’m coping with side effects and protecting my mental health

Key lessons I’ve learned

Self-advocacy and what keeps me going

My advice for others

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More Metastatic Colorectal Cancer Stories

Life Changed Overnight: Rylie’s Experience with Stage 4 Colorectal Cancer

Watch Rylie’s video above and read through her edited transcript below to learn more about how:

My name is Rylie

How we navigate cancer as young adults and a couple

My first symptoms: when things felt off

Advocating for myself and the challenge of getting diagnosed

My reaction to my stage 4 colon cancer diagnosis

I had emergency surgery

Living with an ostomy

Finding the right care team

What my treatment has looked like

My treatments, including fertility treatment, and their side effects

Scans, communication, and no evidence of disease

Hope and faith through cancer

Support from the colorectal cancer community

What I want others to know

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More Metastatic Colon Cancer Stories

How Faith and Family Keep Jackson Going Amid Stage 4 Colon Cancer

Hi, I’m Jackson

When I first knew something was wrong

I wanted a second opinion

When I got the news “you have cancer”

I had surgery right after I was diagnosed

The plan moving forward

I changed my diet

How my diagnosis has impacted me mentally

I had my colostomy bag removed

The hardest part of my journey

I grew in my faith