Author: Chris Sanchez

Categories
Chemotherapy Colostomy Hormone replacement therapy Hysterectomy Lymphadenectomy Patient Stories Proctectomy Radiation Therapy Surgery Total pelvic exenteration Treatments Vulvar Cancer

Carly’s Stage 3 Vulvar Cancer Story

Carly A. vulvar cancer

“Cancer Can’t Take Your Mind”: Carly’s Rare Vulvar Cancer Story

Carly was diagnosed with stage 3 vulvar cancer in 2014 and experienced a recurrence three years later. Throughout her experience, she faced an array of medical and personal challenges, including persistent and increasing pain, loss of fertility due to aggressive radiation, and two and a half years of bladder and bowel control issues. 

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Carly’s vulvar cancer experience had an impact beyond the physical part: she had to make hard decisions about parenthood, confronted the stigma associated with “below the belt” cancers, and redefined what recovery looks like. She describes her acceptance of a colostomy bag not as defeat, but as a means to regain quality of life and independence. Supportive doctors and care teams gave her vital emotional and practical care at each stage.

Carly A. vulvar cancer

Transformation and advocacy are at the heart of Carly’s experience with this rare cancer. Early on, she coped by shielding loved ones from her pain; later on, she empowered others by sharing her journey on social media and at patient conferences. By communicating openly and honestly, she not only helped break stigmas around gynecologic cancers, but also helped many others accept the realities and possibilities of life after the major surgeries she underwent, namely lymphadenectomy, hysterectomy, total pelvic exenteration, protectomy, and colostomy, as well as chemotherapy and radiation therapy. Her story shows that no one should feel shame about their diagnosis or condition, and that making connections through shared stories is vital to emotional healing.

Today, Carly continues regular monitoring and discusses the practical aspects of living with vulvar cancer, including managing pain, organizing support systems, and focusing on self-compassion and legacy. Her resilience and advocacy offer reassurance and guidance to all those navigating similar paths.

Watch Carly’s video for more about how:

  • Finding personal advocacy can help patients navigate difficult and rare diagnoses like vulvar cancer
  • “Below the belt” cancers carry a unique stigma, making open conversations and connection essential
  • Acceptance and adaptation can restore quality of life, even after major treatment
  • No one should feel shame about their diagnosis
  • Proactive symptom awareness and self-advocacy help ensure timely diagnosis and care
  • Name: Carly A.
  • Age at Diagnosis:
    • 38
  • Diagnosis:
    • Vulvar Cancer
  • Staging:
    • Stage 3
  • Symptom:
    • Intensifying pain in the pelvic area
  • Treatments:
    • Surgeries: lymphadenectomy, hysterectomy, total pelvic exenteration, proctectomy, colostomy
    • Chemotherapy
    • Radiation therapy
    • Hormone replacement therapy
Carly A. vulvar cancer
Carly A. vulvar cancer
Carly A. vulvar cancer
Carly A. vulvar cancer
Carly A. vulvar cancer
Carly A. vulvar cancer
Carly A. vulvar cancer
Carly A. vulvar cancer

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

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

Transcript of Carly’s Interview
  1. My name is Carly
  2. What 11 years of my life have been like with a rare cancer
  3. My first symptoms
  4. Learning how to self-advocate
  5. The moment everything changed
  6. How I reacted to my rare cancer diagnosis
  7. My initial vulvar cancer treatment
  8. The cancer went away, but came back
  9. Life with a colostomy bag, surgery, and recovery
  10. The mindset around my ostomy bag
  11. How social media helped me
  12. Monitoring and living — not just surviving
  13. Understanding the cause, and breaking stigma to talk about “below the belt” cancers
  14. What I want people to know

My name is Carly

I am a two-time stage 3 vulvar cancer survivor. I was first diagnosed in 2014, and my recurrence was diagnosed in 2017. I live in the Greater Vancouver area in Canada.

Since I was a young girl, I have been a sports enthusiast. I was the firstborn, and my dad loved hockey and football. He would take me to hockey and football games as a young girl, and that’s just come with me into adulthood. On a Sunday, Thursday, or Monday, the nights that sports are on television, you will either see me at a game or in my living room watching some sort of athletic game. Go, Birds. Go, Canucks! Those are my two teams. 

I am not a mother, but I love animals, photography, entertaining, and having friends around me. That kind of vibe is always in my house. Doors are open for anybody who wants to come over.

What 11 years of my life have been like with a rare cancer

Tough. In one word, really tough. 

I had heard of people having cancer before being diagnosed, but nobody in my family had gone through a major battle. When mine was diagnosed, and I found out how extreme and scary it was going to be to try to save my life, I didn’t really have anyone to look up to. So it was just really hard. 

I think it was hard on my family and my friends, too. I often shielded them from some of the pain I was going through because I was more concerned about their feelings than my own most of the time. 

I tried to put on a really tough exterior. Early on, I said to myself, “Listen, cancer is going to change your body for the rest of your life if you survive. But I told myself, “Cancer may take your body, but it’s not going to take your mind.” I stuck to that. 

It doesn’t mean I didn’t have days of darkness. I moved on from those emotions quickly because I didn’t have it in me to mentally and physically be down in the dumps. I wore lipstick to treatment because I love lipstick; anything I could do to give myself a little light in such a dark time.

My first symptoms

There was nothing extreme in my vulvar cancer case. Unlike certain cancers where people lose weight quickly or their skin gets pale, for me, it wasn’t like that. I had pain; that was basically the way I was first alerted, because my cancer was in my vulva. 

It’s not something you see every day, like your breast or your arms. It wasn’t something I was regularly checking on my own. When I started to have pain, it kind of felt like I was sitting on a pebble, then a rock, then a golf ball. It got to the point that I thought, “This is not going away.” 

In the early 2000s, I had Bartholin gland cysts, which is a drainage problem; you have to have surgery, and they do something called marsupialization, turning the gland inside out. So, I just thought I had another cyst, but it was larger and wasn’t going away. I went to the emergency room, and people just said, ‘Oh yeah, it’s probably a cyst, here’s some medication.’

But there was no confirming it was a cyst. The pain just got worse and worse. My family doctor put in a referral, but it took time. More ER visits, but still nobody found out what was wrong. I called in sick to work. I was in extreme pain; standing or sitting was agonizing. 

Finally, I saw a gynecologist who said, ‘I’m not trying to scare you, but I think we need to take a biopsy. I think you have a tumor.’ She said that within five minutes of looking at me, whereas others had looked at me for almost a year and didn’t see it. That was on a Monday. The results came back Friday: it was vulvar cancer.

Learning how to self-advocate

I didn’t know how to advocate for myself then. Today I’d say, “Listen, doctor, we need to do ABC right now,” but back then, I just listened a little too much. 

At one point, a doctor said, “Maybe you have genital warts.: I knew that wasn’t the case; I got really frustrated. Once everything was confirmed by a woman who was about the same age as me, we both cried when she gave me the diagnosis. 

I told myself, “You, Carly, have been going through this for almost a year. You need to step up your game, make sure the next doctor you see doesn’t take you lightly. Ask more questions and take notes.’ That was the start of a big book with many chapters.

The moment everything changed

I was 38 at the time. I had just been at my cousin’s wedding the week before, and I couldn’t sit in the chair or stand in the photos; I was hunched over. 

Looking back, I was paler than usual. I look back at that photo and think, “Man, I looked pretty pasty.”

The doctors told me I had stage 3 vulvar cancer. They actually put my mother in a separate room, where another physician told her. Not being married and not having a partner to support you is different than having a parent. 

When my mom and I were reunited in the same room, the tears were flowing. We called my brother and father on speakerphone and told them, and everybody was just a mess. Everything was happening so fast because I was advanced stage.

That moment when mom and I were reunited still brings me to tears today. She was hearing about her daughter, her eldest child. I’m her only daughter, so I can be her favorite daughter. We were both dealing with very hard emotions. 

We’re both tough cookies, but it was a really hard moment I don’t think either of us will ever forget.

How I reacted to my rare cancer diagnosis

As much as we think we know our bodies, sometimes we don’t. I was like, ‘Vulva? What are you talking about?’ You think vagina, or clitoris; those are words you hear more often, not so much vulva. Especially since I had never had a child. I needed clarification.

I’ve learned a lot about the vulva over the years. Being so rare, I thought, “What did I do to myself?” I did not have HPV or any other disease that made this happen. 

We didn’t find out what caused it for a few years, which I can touch on later. At that time, I wondered, ‘Did I not go for my checkups soon enough? Did I sit in a perfumed bath?’ 

Ultimately, that was not what caused it.

My initial vulvar cancer treatment

I didn’t really know what vulvar cancer would look like for me. The only image I had was super frail, no hair, pale as a ghost. I had a friend who survived leukemia, but her cancer was so different. 

Immediately, I was in for some kind of scan. Soon after, I met with the oncology team; within a week, they told me I’d have chemotherapy and radiation, but more radiation because of the location. 

I underwent 39 pelvic radiation treatments. Before that, tattoo markers that looked like freckles were placed for the laser alignment on my hips. Five days a week of radiation, chemo once a week.

My chemo cocktail wasn’t as aggressive as some other types. My hair didn’t fall out, but it got very thin. I was in agony from treatments and the tumor, but looked kind of like everyone else. I struggled because people said, “Oh, you have stage 3 cancer? I had no idea.” I know they didn’t mean harm, but I had that image in my head, too.

I started saying, “Not all cancer is pink, because it’s not all pink. And pink is my favorite color, but… I would have, not that I would have loved breast cancer, but that would have been more up my alley than a purple. And cancer as a whole falls under the purple ribbon.”

The cancer went away, but came back

I did chemo and radiation, had about a month off, and then went to the pub with girlfriends, just to get out in the world again. My pelvis did not have a good time, but I needed to get out. 

A month later, I had surgery to remove what was left of the tumor.

Radiation took away my fertility. Not only was I told I have cancer, but that unless I chose to attempt to retrieve eggs immediately, I would lose the ability to have children. I had to decide within 24 hours. At 38, not being in a serious relationship, I accepted that parenthood was not in my path and mourned that loss.

After surgery, they didn’t get massive margins, which meant they couldn’t take enough tissue to be sure all the cancer was gone; otherwise, I would have lost more of my anatomy. So they watched and waited. I had a hole in my vulva needing hyperbaric treatment to heal, which helped.

I didn’t have good control of my bladder or bowels because the radiation was so aggressive. For two and a half years, I struggled with bladder and bowel control, wore adult diapers, and couldn’t work much or leave the house due to anxiety from fear of accidents. 

When the cancer was confirmed to have returned, one of the first things I asked was, “If you cut more and I lose things, does that mean I’m not going to soil myself anymore?” They said yes, and I would need a colostomy bag.

Life with a colostomy bag, surgery, and recovery

One of the biggest reasons I accepted the colostomy bag was that I never wanted to soil myself again. My quality of life before that was terrible. I had accidents at work all the time. They never got the margins, so the cancer came back. Because I had been treated so aggressively, they couldn’t repeat previous treatments. Instead, I needed pelvic exenteration surgery.

Basically, they cut me from bra line to bikini line; they opened me up “like Humpty Dumpty.” They did a complete hysterectomy, removed and closed my rectum, and placed my colostomy on my left side, connected to my sigmoid colon. I’ve had more epidurals than people have had babies.

When I woke up, I was covered in over 67 staples. Learning to walk again was incredibly difficult. My core was rebuilt, and I ended up with hernias later.

The mindset around my ostomy bag

The colostomy was not hard for me, because I used it as a shield. 

It’s much harder to talk about having a rebuilt vulva that’s very narrow and hard for intimacy, or about not having a rectum. We jokingly call it a ‘Barbie butt’ in the ostomy community. I still hide behind the bag, because it’s easier to talk about. Every year, I think about being more transparent about my vulva journey. The ostomy was the easiest thing for me. I’ve never really had any major mishaps, and when meeting people, I just get it out there: ‘I’m a cancer survivor and have a colostomy.’

When it comes to dating, my digestion is much the same as anyone’s, thanks to still having a colon. About two and a half years in, I learned I didn’t have to empty my colostomy; I just wear a closed pouch and replace it. In six years, I haven’t put stool in a toilet. I can’t just be intimate the way others can, and if I overdo things, my body tells me to rest.

She’s my crutch, but she’s my bag, and I love her. I name her Winnie, like Winnie the Pooh.

How social media helped me

Cancer made me a better person. Pre-cancer, I was self-conscious and worried too much about what others thought. Cancer forced me to fight. Not working for six years gave me time to know myself differently.

I took to social media. Instagram in 2014 wasn’t what it is today. I started sharing my story; my cousin helped me pick the handle “Ostomate and the City.” Over the years, I’ve built relationships and a strong community.

It’s easy to look at the ostomy bag and hate it, but we need to hate cancer, not the bag.

In August, I attended the United Ostomy Association of America conference. Women came up to me, saying that I had helped them. This journey has been a boomerang; someone helped me, and now I help others. If I just sat at home with my anxiety, I’d never be where I am today.

There was nothing I could do to change it. Accepting and carrying on really helped me get to where I am today.

Monitoring and living — not just surviving

After surgery in 2018, the doctors said they had done everything possible. 

Monitoring began monthly, then was spaced out to annually. Now, I go in once a year. 

My team is great; if I feel something’s wrong, they’ll get me in. My pattern is pain, so as long as I’m not in pain, I’m okay.

For a while, I lived in fear of cancer returning, but eventually tried to focus on just living. There’s living, and then there’s living. I’m not living some high-flying, traveling-everywhere lifestyle. I spend time with people I want to be around, and I’m okay spending time alone. My cat is snuggly.

I do get some anxiety in large crowds, preferring assigned seating. I choose who to be with and where to go. As a cancer survivor, you feel like you have to do everything, but I learned I only need to do what’s right for me. If I could be hit by a bus tomorrow, would my friends and family know what to do? I wrote a will before my 2018 surgery. I’m always organizing, trying to make sure that, if something happens, people can find what they need.

It’s easy for darkness to overtake us, but I’ve built support around myself. If something bothers me, I move on.

We’re never free of cancer because cancer has changed us emotionally and physically. But I don’t want cancer to control me, so I just try to control my life, to make it easier.

Understanding the cause, and breaking stigma to talk about “below the belt” cancers

For years, I didn’t know. Neither did the doctors. I’d ask: ‘Why me? What did I do? What did I eat?’ 

It turns out that I had colon tissue in my vulva, due to tissues not separating properly in utero. That eventually led to aggressive fighting between tissues, and ultimately, cancer. So it’s essentially been in me since conception.

As girls, we’re taught not to even say ‘vagina,’ let alone ‘vulva.’ Boys can be open, but not girls. Today, my young niece’s generation is more open, but when you get cancer below the belt, you feel shame, disgust, and dirty. Having cancer in your private parts is hard to talk about. 

Breast cancer is socially accepted; gynecological cancers are not as easy to discuss. But you should never feel shame.

What I want people to know

It’s never really over. Even if someone says they’re cancer-free, you’re not free of what you’ve been through. 

People say time to move on, but sometimes you just need time in the depths of despair. There is no timeline for recovery.

I mourned not being a parent, but what gets me now is thinking about legacy. What’s left of me when I’m gone? I used to mail everyone birthday cards; before my big surgery, I wrote out a year’s worth of cards just in case I didn’t wake up.

Legacy can be left in many ways, even if it’s not through children.

Carly A. vulvar cancer
Thank you for sharing your story, Carly!

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Colleen J. stage 4 endometrial cancer

“You Are Not Your Cancer”: Colleen’s Stage 4 Endometrial Cancer Message

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Macy on Parenting, Pain, and Self-Advocacy With Cervical Cancer

Macy L. cervical cancer

Macy on Parenting, Pain, and Self-Advocacy With Stage 3B Cervical Cancer

Macy’s cervical cancer experience is a powerful reminder of the many challenges patients and families face when symptoms persist or a diagnosis takes unexpected turns. Diagnosed with stage 3B cervical cancer, Macy’s story began with months of unexplained pain, irregular bleeding, and escalating symptoms that doctors initially thought were due to urinary issues or typical cycle problems.

Interviewed by: Keshia Rice
Edited by: Chris Sanchez

A busy mother of three, Macy describes the physical and emotional toll her cervical cancer diagnosis and treatment took, not only on her body, but also on her relationships and home life. She endured chemotherapy and daily radiation, followed by arduous internal radiation procedures that she says she “would not wish on my worst enemy.” Throughout these treatments, Macy relied on her family, particularly her mother, children, and supportive boss, to help manage daily life and responsibilities when she could barely get out of bed or up the stairs, let alone care for her children like she was used to doing.

Macy L. cervical cancer

For Macy, the mental health impact of her experience was as profound as its physical effects. She endured nightmares and anxiety over recurrence, and also struggled to put herself first after years of putting her family ahead of her own needs. While she missed social events and lost friendships due to her symptoms and recovery, the experience ultimately taught her the value of true support networks, what it means to receive real help and connection when you need it most.

Now in remission and on maintenance therapy, Macy stresses the importance of self-advocacy, regular screenings, and being heard by one’s medical team. Her cervical cancer experience is a testament to resilience and the power of speaking up, both for yourself and others. She hopes that sharing her experience will help empower other patients to act early and not suffer in silence.

Watch Macy’s video above, and read through the edited transcript of her interview below. You’ll gain insights into how:

  • Early and persistent symptoms like pain and unusual bleeding should never be ignored. Self-advocacy is critical
  • The support of family, friends, and empathetic workplaces can make a significant difference in a patient’s cervical cancer experience
  • Emotional well-being and mental health are just as important to address as the physical aspects of cervical cancer
  • Realizing that “you never know” what someone is going through, respecting unseen struggles, can help cultivate compassion for others
  • Macy’s experience taught her to put herself first and to accept support, evolving from someone “who never put myself first” to embracing self-care and connection
  • Name: Macy L.
  • Diagnosis:
    • Cervical Cancer
  • Staging:
    • Stage 3B
  • Symptoms:
    • Bleeding for a month
    • Passing large clots of blood
    • Severe pain in lower back
  • Treatments:
    • Chemotherapy
    • Radiation therapy
Macy L. cervical cancer
Macy L. cervical cancer
Macy L. cervical cancer
Macy L. cervical cancer
Macy L. cervical cancer
Macy L. cervical cancer

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

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

Transcript of Macy’s Interview
  1. My name is Macy
  2. When I first knew something was wrong
  3. Getting the official diagnosis
  4. I found out I had HPV in 2018
  5. Screenings and my medical team
  6. My treatment: from chemo to internal radiation
  7. Recovery, remission, and ongoing treatment
  8. Mental health, self-care, and support
  9. What survivorship means to me
  10. Trust in my body and wanting a hysterectomy
  11. Cancer changed my priorities and motherhood
  12. What I want others to know

My name is Macy

I’m from Houston, Texas. I was diagnosed in 2025 with stage three cervical cancer.

I am a mom. I have three kids, aged 12, seven, and two. I play softball on the weekends; well, I did, but I don’t really do much of it anymore. Other than that, I teach preschool-age children, three and four-year-olds. 

That’s pretty much all I’ve got going on. I don’t have a whole lot of a life right now.

When I first knew something was wrong

Well, first it was just pains in my lower back and things like that. So I just thought it was nothing, just the day, or whatever. Then it progressed. That was at the end of last year. Then it progressed a bit to where I was bleeding. It was just spotting, nothing crazy. So I thought it was normal, as I used to not be very regular. 

Then, probably around October of last year, 2024, the bleeding started getting worse to the point that I was passing really bad clots, and I was having to get blood transfusions because I was losing a lot of blood. My pain also got worse around then to where I was constantly on high, strong pain medicine, not just over-the-counter medication.

Around the end of November last year, I went to see a urologist because they believed I had issues with my bladder and kidneys. I had been misdiagnosed with kidney infections, UTIs, bladder diseases, and all kinds of things. He ended up saying nothing was wrong with those, and then I couldn’t do anything else until January 2025 because of my insurance. 

In January 2025, I finally saw my OB, and he was talking to me about just getting a hysterectomy; we thought maybe I had endometriosis until he did my biopsy. That’s when he found it at the very beginning of January 25th.

Getting the official diagnosis

When I went in for my biopsy, that’s when he actually told me. 

I was at the hospital, and they did my biopsy in the hospital because I have a very low pain tolerance, so they put me to sleep to do it. Also, because of all the bleeding, they didn’t want anything to happen. Afterwards, my mom came into the room and I asked her if she had talked to the doctor because he said he would give an update when I was out of surgery. And she told me all he told her was that it didn’t look good. 

Then, a week or so later, he called me on the phone. I was actually at work; I had to step out of my classroom and answer his call. He told me that I, in fact, did have cancer. He didn’t tell me the stage or anything like that. He just told me that I for sure had a tumor that covered my whole cervix and that he would get me in touch with an oncologist.

When he told my mom that it wasn’t good, I kind of already knew what he was going to tell me. I’m really big on not getting emotional in front of people, so I just sat there and froze. My husband and my mom were there, so I really didn’t show any emotion that day. I just went on about my day because I didn’t, you know, get told, “Oh, you have cancer today.” I got told it wasn’t good, so I just floated through the next week. Then, when he told me and I was in my classroom and had to step out, I didn’t cry or anything, but the first thing that went through my mind was just my kids — like, what was I going to do? 

This was going to be hard because my husband works out of town a lot, so I’m kind of just like a single mom.

I found out I had HPV in 2018

I wasn’t very knowledgeable about HPV at all. When I was told I had HPV when I had my second son in 2018, the doctor wrote it off, like it was fine, that it would handle itself. He didn’t tell me that I needed to do anything, so I just forgot about it. There were no symptoms. There was nothing. I just lived with it, and I was with the same person, so I didn’t have an issue with who I was with. It just disappeared; I forgot I even had it. 

And then, when they told me it was HPV-positive cancer, I think they called it squamous cells. I put two and two together, and basically, they told me that having my third child made my HPV react, and my HPV developed into cancer after that.

HPV itself, I honestly don’t know. But as for cervical cancer prevention, yeah. If I had known the two coincided, since I knew I had HPV, I think I would have taken more precautions, gotten examined more often. My pain wouldn’t have been there for so long. I probably would have gotten checked out sooner, or figured something out a lot sooner, because the first bit of pain, I was just too busy. I just pushed it under the rug.

Screenings and my medical team

I was getting annual screenings, but I skipped one after I had my third child, my second son. He did my post-op check a couple of weeks later, and after that, I didn’t get the next one that was supposed to be the following year. They didn’t really remind you — most of the time, they remind you, but he didn’t really remind me. Most of the time, they tell you now that you don’t need them every year, so they don’t remind you. But I think no matter what, you should do them every year.

I trusted my medical team. Once my OB found it — my OB and my wellness doctor (I also have a wellness doctor that I was seeing for my blood levels because I have thyroid disease as well) — both recommended the same doctor, so I figured she had to be pretty good. 

At my first visit, she conducted an exam and brought my mom, my sister, and me into the room. She told me the stage that hour, 3B cervical cancer, and that I would need radiation and chemo because the tumor surrounded my whole cervix, and there was no way to do surgery.

My treatment: from chemo to internal radiation

In the first phase, I went to chemo every Tuesday for nine weeks, and at the same time, I was doing radiation five days a week for 25 treatments, Monday through Friday; I only had weekends off. 

The very first chemo treatment took me out: I went to work the next day thinking I would be fine, but I was on the ground, sick, lying on a pillow in my classroom. My boss had to tell me to go home because I was trying to stay at work. That first one was hard, but after that, they got really easy. I didn’t really have much going on after the first chemo. 

Radiation every day, the side effects didn’t really start until after maybe the second week. I had bad stomach issues with that, but that’s pretty much all. It made me really tired, obviously. I live in a two-story house and couldn’t get up my stairs, so my 12-year-old was very much the second mom of the house. She helped because all the kids’ rooms are upstairs. I could barely walk around my classroom without being out of breath.

After those two treatments, I moved on to internal radiation. I would not wish that on my worst enemy. Internal radiation is when I got really emotional. My mom took me to every single one. Since I had all the problems with bleeding, they did half of the treatment in the hospital. So I went in, and they would insert all the little things they needed. Then I went by ambulance, had to lie flat, and couldn’t move because everything was in place for the radiation. They took me to the radiation office, and I lay in that room on my back for two to four hours while they made a plan for the radiation. That wasn’t too bad the first time; it was just lying there. It gets painful lying there because you have to stay in the same position and not move. A couple of times I fell asleep, so that was good.

The actual treatment only lasted about ten minutes, so once that was over, they took everything out, and you’d get dressed and leave. The first three were okay; the fourth one, though, my medicine didn’t take, so I didn’t have any pain medicine. I cried for all four hours lying in bed flat. When it was finally done, they took everything out, took my IV out, and when I went to change, blood just went everywhere from my arm. The bathroom was covered. I was just crying, and blood was everywhere, and I didn’t know why. I guess they didn’t stop it well enough after taking the IV out. This was one of my most painful sessions, so I was already emotional. Then I started bleeding everywhere, called for my mom, and we both cried while she helped me clean up. It was probably one of the worst things I’ve ever experienced.

Luckily, with the job I have, I think with any regular job, I probably wouldn’t have been able to do it. I teach, but it’s also a place my family owns, so my boss was very helpful. She let me be off whenever I needed to if I didn’t feel good. If I had an appointment, she would immediately call someone to cover me and let me know my schedule weeks in advance. I barely worked back then; she did a lot for me.

Recovery, remission, and ongoing treatment

Right now, they have me in remission. 

Every six weeks, I go in and get my labs done. If they look good, I have my treatment that day or the next. Every six weeks, that’s the routine. 

I have a full-body CT, PET/CT scan coming up in November. That will be my next scan, and if it’s clear, I will still be in remission; if not, we’ll have to make a new plan. 

So for now, I’m doing treatment every six weeks and a scan every couple of months. The treatment gives me joint pain — it hurts to open my toddler’s cups, so my daughter or husband has to do it often. 

I’ve also been put into menopause at 31. I get hot sweats and night sweats and don’t have a cycle anymore. I guess that’s the only positive thing out of this.

Mental health, self-care, and support

I’ve never put myself first; it’s always been my kids, my husband, everyone else, then me. I’ve learned to put myself first. 

If I’m not feeling well, I’m not going to do whatever is being asked. There’s a lot I miss out on because I know I wouldn’t be able to get through it. For example, my husband took our family to the river for the day, but I knew I wouldn’t be able to last, so I stayed home. He told me to have a day for myself, to relax, do what I wanted, or just sleep. So, I have just learned to put myself first now.

Obviously, my family is where I have found support. My mom was there through the whole thing, and my husband was too. Lana, my boss and family member, helped a lot, giving hugs even though I hate physical affection because “she just knew I needed it.” My friend Morgan would bring my kids home if I couldn’t make it after treatment. My friend Cheyenne threw a whole benefit for me, raising money that helped cover medical and household bills while I missed work. Basically, everyone was very supportive.

The friends I lost, some we reconciled and are okay now. I think a big thing was, they thought it was personal that I wasn’t showing up to events, but I was always in pain, even before the diagnosis. My husband would go to his friends’ houses (wives who were my friends), and I wouldn’t go with him, and they took it personally. I can see where they were coming from, but they didn’t know how I was feeling. A lot were misunderstandings. It wasn’t a dramatic falling out, but more just drifting apart. 

Some friends and I have sat and talked and have repaired things. I let them know where I was coming from, and after a bit, they understood. Some of them are back around, and we are trying to fix our relationships. At the same time, I feel like they should have understood anyway. Nobody chooses to go through this. I would rather have been tired at their house all night than at home crying in pain. It taught me that you learn who your friends are.

I don’t think I had any new communities join my life, but that was kind of on me because I stayed to myself. I was introduced to a cancer support group at the hospital, where you could do wigs or just be around people, use the kitchen, etc., but I never went. I have anxiety and don’t go to new places much. I did make a couple of new friends via social media. Strangers would comment on my story, and one girl having the same diagnosis and treatment reached out, and we talked each other through it, even though she was in another state. We both were having internal radiation at the same time.

What survivorship means to me

I don’t really feel like I’ve survived yet, not until after remission. They tell you that you’re in remission for three years, and it could come back any time. You’re not really “cured” until after that three-year mark. 

I haven’t rung the bell; I’m saving that for after my three years, once I’m truly done. Then I’ll feel like a survivor.

I don’t really manage the fear of recurrence; it comes and goes. I have bad dreams almost every night about my cancer coming back, not being there for my kids. They are so young. My husband is amazing, but dads don’t remember everything. I worry: what will they do if I’m not around? He works out of town so much. 

If it does come back, I think about whether I would do the treatment again — I’m honestly not sure. It would depend on how bad it was.

Emotionally, it feels like a roller coaster. One day, I may look okay and people think I’m better, but five minutes later, I could be alone in bed crying, in pain. Most of the time, you fake it in front of people. Physically, it’s about the same — others don’t really know.

Trust in my body and wanting a hysterectomy

No, I don’t have trust in my body now. Any pain, I immediately think it’s cancer. My back hurts, and I automatically go there because that’s where it all started. I was even hospitalized for two weeks this past summer due to kidney swelling, and I immediately panicked that it was cancer spreading, but it was just a bad infection. My immune system just couldn’t handle it.

I would love to have a hysterectomy. I’m done having kids, all of that. It’s chopped, fried, radiated, I’m done. They told me I could not have one. After all the poison in my body, they said if they cut in there, it could spread the cancer, so it’s out of the question. 

Even after three years of remission, I was told it’s really not an option.

Cancer changed my priorities and motherhood

Motherhood — I have learned how to treat my kids better. 

I was never a horrible mom, but I was very stern, had schedules and chores, just as I was raised. I’ve really eased up on my kids about things like that. 

The chores are still there, but if there are dishes in the sink or toys on the floor, it’s okay. I’ve realized you never know what’s next.

What I want others to know

If your doctors recommend internal radiation, do not turn it down. It is an option to refuse, and they said more cases return because people opted out. That’s the only reason I made myself go through it; I didn’t want there to be a greater chance of the cancer coming back.

I felt alone a lot after being diagnosed with cervical cancer, even when surrounded by people. Nobody really knows what you’re feeling or going through, no matter how hard you try to explain. Honestly, the only thing that got me through was social media. If I posted anything, the positive comments, people praying for me, boosted my confidence and made me feel like everything would be okay. If there’s nobody physically next to you, social media literally made me feel like I had people surrounding me.

If I could speak to myself at diagnosis, I’d probably tell myself that it’ll be over soon. And that you’ll get through it. That’s pretty much it.

“It felt like it would never end. I literally told my mom, ‘This feels like it’s never going to end.’ But it finally did.”

Lastly, if you don’t advocate for yourself, that’s about it. My doctors were amazing, so I didn’t have too many issues, but I know some doctors don’t listen. That’s what caused me to wait so long for a correct diagnosis because I just assumed, “Oh, you’re a doctor, you know what you’re talking about.” Sometimes, they don’t. So, if you don’t think that’s the answer or what they’re saying isn’t working, speak up for yourself.

Macy L. cervical cancer
Thank you for sharing your story, Macy!

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Categories
Cancers EGFR EGFR Lung Cancer Metastatic Metastatic Metastatic Non-Small Cell Lung Cancer Patient Stories Radiation Therapy Stereotactic body radiotherapy (SBRT) Treatments

Humor, Gratitude, and Community: How Jennifer Deals with Stage 4 EGFR+ Lung Cancer

Jennifer M. EGFR-positive lung cancer

Humor, Gratitude, and Community: How Jennifer Deals with Stage 4 EGFR+ Lung Cancer

Jennifer, a Boston-area resident and mother of teenagers, received a life-changing diagnosis of stage 4 EGFR-positive lung cancer when she was 48. Her cancer was discovered by accident when she had scans for what she thought was a sinus infection. Her story underscores the unpredictability of lung cancer and highlights the fact that “anyone with lungs” can be affected, regardless of age or lifestyle.

Interviewed by: Keshia Rice
Edited by: Chris Sanchez

Jennifer’s EGFR-positive lung cancer experience did not just revolve around treatment but extended deeply into her family life, emotional processing, and the impact of COVID-19 isolation. The timing forced her to navigate cancer and uncertainty while the world also faced a pandemic. She credits finding the lung cancer community, including organizations like Lungevity, GO2 Foundation, and Lung Strong, with helping her truly realize that she was not alone. These connections provided the strength and resources needed to cope and ultimately thrive, despite ongoing challenges.

Jennifer M. EGFR-positive lung cancer

Her EGFR-positive lung cancer story is one of transformation. Once blindsided by the diagnosis, Jennifer became an educator and advocate, breaking down lung cancer stigma and advancing awareness that this disease is not just a smoker’s cancer. Through advocacy work, joy in everyday moments, and humor, even when facing “scanxiety,” treatment side effects, and painful losses, Jennifer centers gratitude as her guiding force.

Above all, Jennifer emphasizes the importance of research, community, and personalized medicine made possible through biomarker testing. She calls for universal screening, increased research funding, and better support for families and children of patients. Through initiatives like the White Ribbon Project and her own creative projects, she honors the stories of everyone affected and encourages newly diagnosed patients to “find their community” and remember, “You are not alone.”

Jennifer’s video and interview transcript provide more detail about how:

  • Lung cancer can affect anyone with lungs, regardless of age, gender, or smoking history
  • Humor and gratitude are sustaining forces during treatment and ongoing care
  • Connecting with others through advocacy and community provides strength and reduces isolation
  • Biomarker and genetic testing are opening doors for targeted therapies and more hopeful outcomes
  • Every patient’s experience can be transformed by finding meaning and connection
  • Name: Jennifer M.
  • Age of Diagnosis:
    • 48
  • Diagnosis:
    • Non-Small Cell Lung Cancer (NSCLC)
  • Staging:
    • Stage 4
  • Mutation:
    • EGFR
  • Symptoms:
    • None per se; discovered during a physical checkup for what seemed to be a sinus infection
  • Treatments:
    • Radiation therapy: stereotactic body radiation therapy (SBRT)
    • Targeted therapy
Jennifer M. EGFR-positive lung cancer
Jennifer M. EGFR-positive lung cancer
Jennifer M. EGFR-positive lung cancer
Jennifer M. EGFR-positive lung cancer
Jennifer M. EGFR-positive lung cancer
Jennifer M. EGFR-positive lung cancer
Jennifer M. EGFR-positive lung cancer
Jennifer M. EGFR-positive lung cancer
Jennifer M. EGFR-positive lung cancer

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

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

Transcript of Jennifer’s Interview
  1. My name is Jennifer
  2. The accidental discovery that I had cancer
  3. My reaction to my diagnosis
  4. How I processed a devastating diagnosis
  5. Why young women getting lung cancer is so surprising
  6. Addressing stigma in lung cancer 
  7. Stressing about family risk, screening, and guidelines
  8. I balance motherhood and my terminal diagnosis
  9. Gratitude, progress in research, and grief for friends
  10. Living day to day: managing and thriving
  11. Advocacy and the White Ribbon Project
  12. Scrapbooking and seeing the world through a new lens
  13. What I want newly diagnosed patients to know

My name is Jennifer

I live north of Boston in Massachusetts. I was diagnosed with stage 4 adenocarcinoma, non-small cell lung cancer, at the age of 48. That was in January 2020, so I am excited that I am still here after more than five and a half years of being given a terminal diagnosis. The biomarker testing that was done revealed that I have an EGFR genomic mutation, which allows me to take a targeted medication every day. 

I went to college for photography. Right out of college, I went into ophthalmic photography, working in a hospital setting as a technician and ophthalmic photographer. Photography has been a passion of mine, and being in the medical field is part of who I am.

I have a very positive outlook on life. Before diagnosis, I was always very much aware of the beauty in the natural world and was just a happy, happy person. I enjoy being with my family and friends, and I love stand-up comedy. I think that comedy is one of the things that has helped me on this journey I am on now, dealing with stage four lung cancer. I think it is important to still have humor, and it has helped me through this.

I just love comedy. I do not do stand-up, and I wish I did. I try to laugh every day. I have always been goofy, and that has served me well on this journey I am on now.

The accidental discovery that I had cancer

I did not have any signs. My being diagnosed was completely by accident.

I really did not have anything out of the ordinary. I was tired, but I was commuting into Boston to work, and I had two teenage kids. Any kind of fatigue, I just chalked up to my lifestyle, so there really was not anything other than that. 

When I went to my primary care doctor for what I thought was a sinus infection, I was sent to get scans, which then showed that I had this big mass in my lung at that point.

My reaction to my diagnosis

Just absolute shock. How could it be lung cancer? 

We are a very fit family, very healthy. We have a home gym. I was running 5Ks all the time, always very active. I ate healthily. I thought, “Oh, I do not have to worry about lung cancer.” You do your screening for the other cancer guidelines, and it was not on my radar that I would ever be diagnosed with lung cancer.

Now, being in this space and seeing that there are so many younger people being diagnosed with lung cancer under the age of 50, and predominantly women, it is just wild. 

Being in this lung cancer community is a huge gift to me to be a part of the community. I think it is really important because you do not feel so alone. You see that there are so many of us. Unfortunately, we are all in this together, but it was definitely completely blindsiding. 

Growing up, you think of the older person who has smoked their whole life and then would end up with lung cancer in their seventh or eighth decade. You do not equate lung cancer with young, otherwise healthy people. Now I am on treatment, and we may look healthy. I am lucky to be on a targeted medication, but there are side effects all the time that come and go, different side effects that we have to deal with. 

We may not look sick. I do not look sick, but it is still affecting me. I still have the deadliest cancer.

How I processed a devastating diagnosis

In the beginning, there were a few months of really just being devastated, just being blindsided. It took a while to find the lung cancer community, and that really helped. 

Once I found the lung cancer community and saw that I was not alone, we were able to have that support with one another. Without even having to say anything, you just know that these people know what you are dealing with and what you are going through.

To have that is the biggest gift — to be able to find the different organizations. I asked if I could name the organizations or not. To be able to find the LUNGevity organization, the GO2 Foundation for Lung Cancer, the Lung Cancer Research Foundation, and the really wonderful local organization Lung Strong that directly raises funds for Mass General, my local hospital, and Dana-Farber has meant so much. They raise money for research. 

I met the amazing woman who ran Lung Strong, Diane Legg. She was like a mentor to me. She unfortunately passed away, but after living decades with lung cancer. She was a true inspiration. Just finding that community is everything. It is absolutely everything.

I had to navigate my diagnosis as COVID shut the world down. It was interesting because part of me was like, “I am miserable. This has turned our lives upside down.” But then I thought, “You know what? Everybody’s lives are upside down right now because COVID is happening.” I feel like everyone was experiencing the same thing. I think I dealt with COVID better. I was kind of okay with it and okay that we were all masking up and being careful, because that is what I wanted to do anyway: to make sure that I did not get sick from COVID or any kind of cold.

Everybody was hunkered down, and I just felt like cocooning too, being handed this diagnosis. It actually worked out well for me, interestingly. We were able to have Zooms so that, once I found the community, that was nice because we could still be together, the lung cancer community, on Zoom. That was a lifeline.

Why young women getting lung cancer is so surprising

I think people have it in their heads that smoking is equal to lung cancer, and they learned that from all the commercials back in the 80s and public campaigns. They do not realize that your lungs are an organ like any other. You can get cancer anywhere.

It can be from genetic mutations. It can be from environmental toxins. They are saying the air quality and the fine particulate matter are contributing to people getting lung cancer younger, particularly the type of cancers we are seeing. There are so many different types of lung cancer, which I do not think people realize, either; different mutations. People just think, “Oh, lung cancer, it is one thing.” Well, there is the ALK mutation, the ROS mutation, the KRAS mutation, and the EGFR mutation, which I have, and which is found to be predominantly in Asian Americans or Asians globally. I think it is important to try to be part of understanding why it is happening in so many people under the age of 50. The GO2 Foundation teamed up with the Bonnie Addario Foundation to do the epidemiology of young lung cancer, and I took part in that, which involved questionnaires and blood samples, to be part of finding out why it is happening.

I think that environmental exposures and the air quality definitely play into it, and I hope they come out and figure out why it is. I feel like it is an epidemic right now for young people, so it needs to be on everybody’s radar, no matter whether they have the risk factors or not. There is also radon, which is another huge cause of lung cancer. They are still trying to figure it out.

Addressing stigma in lung cancer 

I have dealt with stigma. Nobody deserves lung cancer — or any cancer — regardless of their smoking history. There are many causes, some known and some still being figured out, especially for those under age 50. I don’t get upset; instead, I use every opportunity to educate — anyone with lungs can get lung cancer. 

With fellow survivors, I’ve gone to the Boston Public Library and talked to people about the facts. I became a phone buddy through the GO2 organization and Cancer Hope Network, which has been fulfilling and helpful, both for myself and the people I connect with.​ 

Stressing about family risk, screening, and guidelines

Yes, those are stressful for sure, especially being in this space and having been in this space for over five years now, I definitely want everybody to be tested. 

I really think that guidelines need to change and that amazing people are working on that. ALCSI, the American Lung Cancer Screening Initiative, is working hard on that. 

It is going to take a while to get there, but I feel like everybody should be screened just like we do colonoscopies or mammograms. I feel that a low-dose CT scan starting at 35; hopefully, we will get there, and the guidelines will change, but it is involved, and it takes a while.

I think if people are having symptoms, I hope that interviews like this will help people advocate for themselves and be able to go to their doctors and, even if they have to pay out of pocket, insist — if they are having certain symptoms — on a low-dose CT scan. 

Again, as I said, I did not have any symptoms, and others may not either, but they should still insist on a low-dose CT scan.

I do know there is a study coming out also at Mass General that will be looking at children of people who are diagnosed with lung cancer and seeing about screening them. That is exciting to know that that will be coming out, and perhaps my kids will be able to take part in that study. There are a lot of people working on this.

Because in the lung cancer space, the oncologists and the surgeons and everybody — we are really trying to move that momentum and raise the awareness that anyone with lungs, all of us, can get lung cancer. We are all breathing the air. Again, like the radon or any job-associated exposures, veterans, people who have served in the military are at higher risk, firefighters, different occupations. We need to continue the conversation that your lungs are an organ, and you can get cancer there.

I balance motherhood and my terminal diagnosis

That is the worst part. 

I feel like I can handle anything. I am going to keep going, and my reason is to keep going for them. But they are my biggest worry in all this, that mental part. The mental part is the hardest.

You worry because you do not want them to worry. I see that my kids, being older, my son was able to go on Google and look up the statistics and see that the outlook is not good, that the five-year survival rate is dismal. I did not even expect to be here, so that is amazing. 

I just try to be really grateful. Being grateful has been the biggest piece for me and for my family.

Gratitude, progress in research, and grief for friends

I try to say, “This is amazing. Research has really taken off in the lung cancer space in the last ten years, especially.” 

We have come so far. It is really exciting. It is amazing that I get to be on this targeted medication and that I have been doing well.

The hard part is losing friends in the community, as I have lost so many. They are with me. They are with me in my heart. It is a hard thing because you lose people all the time, and it is devastating, and then you are still here. I am so grateful. 

To instill that in my kids and my husband, it has really helped him, too. Now he is like, “We are grateful for the time that we have had, absolutely grateful.” To put that spin on it is everything. 

We try to look at it like that, always being grateful. Grateful for the time we have had and grateful for the research that is continuing to happen. 

Cancer always finds a way around whatever treatment you are throwing at it. It is a wily coyote. It will find its way around, unfortunately. But to be grateful, to have that as your driving force, is everything.

Lung cancer is the deadliest cancer, but it receives the least federal funding, which is crazy. Recently, funding for several cancers, including lung and pancreatic cancer, was cut significantly. That’s upsetting, and it’s pushed our community to advocate — we’ve gone to Capitol Hill and met with Senators to share our stories and the importance of continuing to fund research. It’s essential that funding increases for lung cancer, and meeting with state representatives is huge; the cancer community is unified in this effort.​

Living day to day: managing and thriving

It’s challenging; everything changes and evolves. Five years in, I’m different than I was two years into the journey. I try to focus on the first step, not the whole staircase; staying in the moment and not looking too far ahead. 

I used to constantly research options for when my current therapy stops working, but I’ve learned to stop delving into that and instead stay present. 

It’s hard not to plan far in advance, especially when friends talk about exciting plans. I circle back to food and supplements: initially, I cut out all sugar for about eight months, but there’s no evidence that sugar affects lung cancer, and my oncologists have told me that. Now, I enjoy my dark chocolate and ice cream, and I’m still here. 

I stick to what my doctors recommend and focus on exercise as much as I’m able. Movement of any kind is important.​

Advocacy and the White Ribbon Project

My shirt says “Got Lungs? Then you can get lung cancer.” 

The white ribbons behind me are from the White Ribbon Project, an amazing grassroots organization started by Heidi and Pierre when she was diagnosed with lung cancer and wanted a big white ribbon. They mail wooden white ribbons to survivors and caregivers, which helps us start conversations and share that anyone with lungs can get lung cancer. 

Wearing and sharing these ribbons brings people together.​

Scrapbooking and seeing the world through a new lens

Making a scrapbook has helped me. It’s filled with positive notes to myself, articles about other survivors, and records of events and the people I’ve met. It celebrates survivorship and honors those we’ve lost. Every person and every story is important, and this is my way to remember and honor my lung cancer community.​

People say they’re grateful to be diagnosed because it changes how they view life and the world, and it’s true. I was always positive and a photographer who noticed beauty, but this experience pushed it to another level.

I am even more grateful and awestruck by life and the world. I appreciate every interaction and am grateful for our community and this opportunity to talk. Every connection matters.​

What I want newly diagnosed patients to know

You are not alone. All the organizations I mentioned have built a powerful community, and that is our greatest strength. 

There is a lot of hope right now with more research than ever before. You can choose your level of involvement, whether being active or just reading posts — you’ll still feel supported. 

Find the community; you are not alone, and that’s the biggest message I would share.​

Jennifer M. EGFR-positive lung cancer
Thank you for sharing your story, Jennifer!

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Share your story, too!

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Jennifer M. EGFR-positive lung cancer

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Categories
Chemotherapy Gastrectomy Gastric Adenocarcinoma Immunotherapy Partial pancreatectomy Patient Stories Radiation Therapy Stomach Cancer Surgery Treatments

Life Without a Stomach: Amy’s Stomach Cancer Experience

Amy M. stomach cancer

Community, Music, and Life Without a Stomach: Amy’s Experience with Stage 3B Stomach Cancer

Living in Ontario, Canada, Amy had struggled with heartburn and digestive trouble since 2018, while tests and prescriptions repeatedly failed to explain what was really wrong. These would be the early symptoms of her stomach cancer, or gastric adenocarcinoma. A passionate music teacher and performer, Amy powered through, teaching and even forming a new band, Rowan Tree.

Food began to get stuck in her throat and she started to lose weight. The turning point came with anal bleeding, prompting Amy, on her fifth ER visit, to insist on more testing. Only then did a CT scan reveal that she had a tumor, and that it had already invaded her pancreas and lymph nodes.

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

Her stomach cancer experience became a testament to survival and advocacy. Amy says, “If your general practitioner isn’t listening to you or not getting you the proper tests, you’ll have to go to the emergency room and demand a CT scan, because that’s the only way they can know for sure.” Her oncology team moved quickly, and she began seven cycles of chemotherapy, then endured arduous radiation therapy. Radiation left her dehydrated and gaunt, at one point pausing after she experienced intense side effects and dangerous blood clot scares.

Amy McC. stomach cancer

This gastric adenocarcinoma experience reshaped Amy’s life both physically and spiritually. Her treatments were grueling and recovery was slow; she needed to relearn how to eat and faced new limitations, and had to learn to be patient with herself. Post-treatment, her beloved music proved to be a powerful healing force, and support from family and online groups became essential. Amy’s gratitude practice and openness to “post-traumatic stress growth” transformed fear into a focus on living with intention and compassion. She says, “[After] this kind of experience, you become a better person, you’re more thoughtful, you’re more careful with your words.”

Today, Amy finds meaning in the magic of small joys, the connections in music and daily gratitude, and in urging others to listen to their instincts and push for answers. Although, as she notes, “I’m not off the hook until five years,” her experience offers hope, inspiration, and real-world advice for anyone also navigating stomach cancer.

Amy’s video provides insights regarding how:

  • Self-advocacy is crucial; insist on proper tests if symptoms persist, even after negative results
  • Cancer symptoms may be subtle and easily missed. Push for clarity when something feels wrong
  • Profound life changes, even unwanted ones, can deepen empathy, gratitude, and self-awareness
  • Music, support groups, and rituals of gratitude can be powerful sources of healing and resilience
  • Amy moved from doubt to advocacy and gratitude-driven living, redefining her sense of purpose and hope
  • Name: Amy M.
  • Age at Diagnosis:
    • 54
  • Diagnosis:
    • Stomach Cancer (Gastric Adenocarcinoma)
  • Staging:
    • Stage 3B
  • Symptoms:
    • Unexplained weight loss
    • Fatigue
    • Blood in stool
    • Stomachache
    • Trouble swallowing
  • Treatments:
    • Chemotherapy
    • Radiation therapy
    • Surgeries: gastrectomy, partial pancreatectomy
    • Immunotherapy
Amy McC. stomach cancer
Amy McC. stomach cancer
Amy McC. stomach cancer
Amy McC. stomach cancer
Amy McC. stomach cancer
Amy McC. stomach cancer
Amy McC. stomach cancer
Amy McC. stomach cancer
Amy McC. stomach cancer
Amy McC. stomach cancer
Amy McC. stomach cancer

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

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

Transcript of Amy’s Interview
  1. Hi, my name is Amy
  2. My early symptoms and red flags
  3. Struggling to get a diagnosis
  4. My reaction to hearing “you have a tumor” and my diagnosis
  5. Creating an aggressive treatment plan
  6. Radiation side effects and dehydration
  7. Facing major surgery
  8. Surgical pain and immediate recovery
  9. Immunotherapy and adjusting to life without a stomach
  10. My scariest moments: blood clot and vomiting blood
  11. Support from my family and my emotional journey
  12. Identity, music, and renewed purpose
  13. Completing my treatment and living with scanxiety
  14. Advice for others facing cancer
  15. The power of support networks
  16. Gratitude for surgeons and oncologists
  17. Advocating for yourself in the medical system

Hi, my name is Amy

I live in Guelph, Ontario, Canada, and I was diagnosed with gastric adenocarcinoma with invasion to the pancreas on July 25, 2022.

I am a full‑time musician and a music instructor. I am accredited with the Royal Conservatory of Music of Canada, so I teach classical music to children and adults. I teach piano, violin, guitar, and mandolin, and I am very passionate about that. 

I am also a performer and I perform with my band. I have a band called Rowan Tree, which I formed after treatment and surgery, and we are thriving. We have been part of the Hillside music festival here in Guelph for their Hillside Inside last winter.

My early symptoms and red flags

For years, since 2018 or 2019, I had gastric problems. I had heartburn and was always taking Tums, Gaviscon, and things like that. I just was not feeling well. At that time, I do not think I had cancer; I think there was a weakness there. In 2017, they sent me for an ultrasound on my stomach. They did not find anything, so they prescribed different kinds of antacids. They were not really helping, but I was taking them.

When I really started to notice something was wrong was probably the autumn before my diagnosis. I went to eat something, and it got stuck in my throat. I thought that was strange, but it only happened once, so I assumed I just needed a drink to wash it down. Then it happened a couple of other times. 

Other symptoms appeared: weight loss and a lot of blood in the toilet when I went to the bathroom, number two. I do not think that is classically a symptom of stomach cancer; it is more a symptom of colon cancer, but I had been cleared for colon cancer. It was my tumor that was bleeding.

Struggling to get a diagnosis

I complained to my family doctor a lot. They sent me for ultrasounds and blood tests, but they did not find anything. 

In April or May of 2022, they sent me for a barium swallow test. I do not know how they missed it, because apparently, I had quite a large, growing tumor there, and they did not see it. They said everything was fine. I knew that something was not fine because I was still not feeling well. I was choking a lot, and my weight was spiraling down, which was not like me because I had been having a hard time losing weight before that. It was very unusual that every time I got on the scale, I was a few pounds less, and I thought, “I am not even trying.”

It was not until I went to the emergency room for the fifth time that something changed. I finally said to them, “I should have said this before,” but that time I told them I was having anal bleeding, and that was not right. At that point, they said they had better do a CT scan, and that is when they found the tumor.

My reaction to hearing “you have a tumor” and my diagnosis

My reaction was shock. I thought, because of where the pain was, that it was going to be my gallbladder or my appendix or something like that. 

I was able to work. I was working as a teacher at the Waldorf school here in town. I was working every day. I would come home, be tired, and rest, but I could get through a workday. I did not think it was that bad. I thought if it were something like cancer, it would be really, really bad.

I found out it was stomach cancer on July 25, 2022. That is when I got my diagnosis. 

There was a young woman who was shadowing the ER doctor who was on call, and she was in tears. They had to tell me, and it did not look good. It was invasive to the pancreas, there were lymph nodes affected, and it was at the gastroesophageal junction. They were not even sure if the esophagus was cancerous, too, at that time. They could not tell until further diagnostic tests.

Creating an aggressive treatment plan

They sent my file to Kitchener, to the Grand River Cancer Centre, and the oncologist there, Doctor Valdez, called me. He said, “We have to get you into treatment right away. If we do not get you into treatment, you will not make six months.” It was really serious. 

They were going to delay my treatment for some reason, but he said, “No, I am getting her in,” and he advocated for me. I really appreciate that.

He got me in, and they started me on a type of chemotherapy which is very strong, but as soon as I started the chemo, I started feeling better. But of course, you do not feel great right after a chemotherapy session. You are tired and feel a little sick, but they give you a lot of anti‑nausea medication now, so it is not like it used to be. When my mother had breast cancer 30 years ago, she was so sick she could not do anything when she had chemotherapy. I was able, after maybe a day of rest, to get up and do things, and I started feeling better right away. The chemotherapy was working.

I did seven rounds of that chemo drug, and then radiation started. They were not at the same time. It was the seven rounds of chemo and then radiation after that. Then they put me on a low‑dose chemo every other week, approximately, while they were doing the radiation.

Radiation side effects and dehydration

The radiation was hard. I found it very difficult because of where they had to radiate me, right at the bottom of my breastbone and down into my stomach. It was a big area they had to radiate, and it really dehydrated me. I was extremely dehydrated.

From chemo, I did not have many side effects. Once I started radiation, it started out fine. You have to go every day for 26 days. You get a break on the weekends, but you go Monday to Friday, and by the end of it, I was very sick. My hair was falling out. I did not look well at all. I looked really gaunt. I remember I was wearing my hair in a braid, and the braid kept getting smaller and smaller because my hair was falling out. I would be washing my hair and pulling out a big clump of hair.

I cut my hair really short. I did not shave my head; I did not go bald or anything like that, but it was so thin that there was no point in having long hair.

I was supposed to have 26 radiation sessions, but they had to stop at 19 and give me a break. I was so sick. It made me very sick. I woke up in the middle of the night, and I was vomiting blood. The technicians at the Grand River Cancer Centre were concerned because, when they saw me on the screen (it is kind of like a CT scan where they can see your insides), they said my insides, my guts, had shrunk from the radiation. They had to call the radiologist to ask if it was okay to continue, and she said no, that I needed a break. I really did, because I could not eat anything, and I was so skinny. It was pretty bad.

I took about a week or a week and a half break, and then I went back and finished the radiation to 26 sessions. That was the end of November, and then they gave you a break before doing the gastrectomy.

Facing major surgery

I was very terrified about the whole thing. I have a friend who is a therapist, and he does hypnosis. He offered to give me a free hypnotherapy session. His name is Phil Naylor. He is an amazing therapist, an amazing hypnotherapist.

I remember the hypnotherapy session very well. He asked me to call on whom I felt was a spiritual guide, and I did. He said, “When you are going into the surgery, you are going to be calm, all your worries are going to melt away, and you are going to know that your spiritual guide is with you and you are not going to be afraid.”

On the day of the surgery, I was very scared. I was saying goodbye to my husband and crying because you do not know how it is going to go. It could be bad. I was in good hands, though; I had an excellent surgeon. Just as my friend Phil had said, as they were wheeling me into surgery, this calm came over me, and I thought, “Let’s do this.”

The surgery was longer because I had to have two surgeons. Because of the pancreas, my main surgeon only does gastrectomies; he does other things, but he does not work with the pancreas. There was another surgeon, Doctor Ling, who did the pancreas. They had to take the tail of the pancreas off. The stomach sits on top of the pancreas, so it had started to invade the pancreas.

Surgical pain and immediate recovery

I had an epidural going into surgery, but it did not take. This had happened to me when I gave birth to my first child as well; they tried to give me an epidural, and it did not take, so I felt that pain. I felt this pain, and I cannot even describe that kind of pain. It is a pain nobody ever wants to feel. They were right there to give me a shot or whatever I needed, but coming out of surgery, I was in a lot of pain.

Once they give you the morphine and everything, you are okay. They give you a morphine pump as well, so when you feel the pain coming, you can press the pump, and it helps. Eventually, they have to wean you off it because you can get addicted to it. After about a week in the hospital, they said, “No more for you, take Tylenol.”

I was in the hospital for ten days, and I did not have any problems or issues. My swallow test was fine, and there were no leaks in the join to the small intestine. I went home, and after six weeks, I started immunotherapy.

Immunotherapy and adjusting to life without a stomach

Immunotherapy was fine. It was easy. You go in, they put an IV in, it takes about an hour, and that is it. You are done.

At home for those six weeks, I do not think I had much pain. I took Tylenol and was fine. I got up and started walking right away. 

I was weak. I could only walk to the end of the street at first, and then eventually I could go a little farther, and I pushed myself each day. It was important for me to get out, go for a walk, get into nature, and be with my dogs.

The first six months after surgery were tricky because my body had a shock, and I had to learn to eat again. At first, it is only a few bites, and that is all you can eat. If you push it and eat more than you can handle, it is not going to go well; it is not going to stay down. You have to eat really slowly and chew thoroughly. You have to be patient with yourself and with your healing.

My scariest moments: blood clot and vomiting blood

There were a couple of very hard times. One time, I ended up having a blood clot. That was back when I was having chemotherapy and had a PICC line in my arm. One day, a friend of mine came over and said, “You do not look well.” I said, “My arm is red,” and she looked at it and told me I had better go to the hospital. I did not want to go because I did not want to wait six to eight hours in the waiting room, but she talked me into it, and it is a good thing she did.

I had a blood clot in my neck. It had gotten all the way up my arm into my neck, and that scared me. If it had gotten into my lungs, I could have had a pulmonary embolism; had it gotten into my heart, it could have caused a heart attack. That was frightening. 

I know a lot of people choose to have a port, but I was not having any problem with the PICC line until that day. They took the PICC line out, and after that, I had to get an IV each time I had chemo.

The other scary time was with radiation when I was sick at night. I went to throw up, and it was pure blood. That really scared me because I had not had anything like that for a while, and I had never vomited blood. That spooked me.

Support from my family and my emotional journey

My husband was with me through the whole thing. I also have a few close friends who were very supportive, and I appreciate them a lot.

It is really hard mentally and emotionally. You always think you are going to die someday, but you do not think about it. You think that is later, when you are old, and you do not have to think about it now. Then you get a cancer diagnosis and it could go that way. It could happen, and it happens to a lot of people. It is precarious. You feel like it could all be over.

You wonder if you have done all the things you wanted to do, and you think about your relationships. A lot of things go through your mind. It really shakes you up. It shakes your foundation.

I heard of something called post‑traumatic stress growth. Instead of just post‑traumatic stress disorder, it means you change so much through this kind of experience that you become a better person. You are more thoughtful, more careful with your words, more spiritual, because you start to ask what you believe, what your faith is, and where you lie on that spectrum.

I think of myself as a spiritual person, but this deepens everything. It deepens your relationships. It deepens your thoughts.

Identity, music, and renewed purpose

My identity has totally shifted. One thing I have really focused on as a healing aspect of my recovery is my music and working very hard at it. There came a time when I realized I did not want to waste any time. I have always worked hard at music. I started when I was six years old, and I studied classical guitar at McGill University, but now I want to make sure I put my very best foot forward with my music.

I spend my days working on music. If it is not a piano piece, it is a guitar piece, or something on a bouzouki, a mandolin, or a violin. I am always working on it. In the band, I am with musicians who are amazing and very serious about it. They are excellent musicians, and it is wonderful to be with them. We get together every week and practice our material. It is rewarding for them, but for me, it is out of this world. It is for the soul.

I started playing the violin when I was in kindergarten. In my teens, I went to classical guitar, and then mandolin, and I have always played piano, though I just taught myself piano.

I have a YouTube channel. I am starting to put more things online again because there was a period when I focused on live performance and was not doing online content. Now I have started posting again, and that is great because my listeners have stayed with me through all of this absence. They were happy to see me back at it again.

Completing my treatment and living with scanxiety

Once I finished immunotherapy, that was the end of my treatment plan, and I was able to ring the bell. Since surgery, I have been clear. It is great.

The moment I found out the good news was a relief, but there is always something in the back of your mind. The statistics on this kind of cancer are that it often returns, usually within two years after gastrectomy. It often comes back. I will be three years out in January, but I am not off the hook until five years, until the five‑year clear. You live with that hanging over your head.

In August, I had a CT scan, and they noticed some abnormalities in my colon. Then I had to go for a colonoscopy. I was having panic attacks and was very anxious. I thought, “Is it back in my colon?” It was not. I had the colonoscopy, and everything was fine, and it was a huge relief, but leading up to it, for about three weeks, I was a nervous wreck.

To cope with scanxiety, I pray. That is what I do.

I feel good. I am healthy. I do a lot of yard work. I am always walking my dogs. I go for two walks a day, and I spend a lot of time with friends and family. That is what is important to me.

Advice for others facing cancer

For someone going through the same thing, or cancer in general, I would say you have to trust. It is hard to trust because it is like you are on the edge of a cliff, but you have to trust that whatever is going to happen is what is supposed to happen for you. You have to pray. You have to surround yourself with love and family and support. You have to take it one day at a time because none of us knows what is going to happen.

We never know. I could walk out of my house and get hit by a car. We do not know what is going to happen day to day. Before this diagnosis, you are just living life and going along, and you are not thinking about these things. Once this happens, it sharpens your focus. You start to think it could happen any day.

There is a Buddhist meditation I like. I am not a Buddhist, but I like this meditation. Before you meditate, you say to yourself, “It is certain that I will die. I do not know when, and it could be today.” That forces you to live in the present moment, to not worry about the future, to forget about the past because it is gone, and to focus on the here and now.

I once saw a sign that said something like, “Forever is composed of all the nows,” or “Every now leads to forever.” I may be misquoting it, but the point is that what is happening right here, right now, is the most important thing. We do not know what is going to happen tomorrow.

The best we can do is be happy, be loving, and be grateful. That was a big thing my godmother told me when I found out I had cancer, and she also lost her daughter to cancer. She said, “Every day, I want you to write down five things you are grateful for. Start a gratitude practice.” That is important, and it has helped me. I still do that every night as I am lying in bed, thinking about all the things that happened that day that I am grateful for. It helps a lot.

The power of support networks

I found support networks to be very helpful. At the Grand River Cancer Centre, they offered a women’s support group, which I attended for a couple of years. There ended up being a time conflict, so I have not been going lately, but it was a good group. It was all women with different kinds of cancers, and it had a sisterhood feel.

Online, there is a group called Stomachless Living, which I am a member of. We talk about what we are going through and offer advice and help each other. That is helpful because it is a challenge to live without a stomach. There is also a group called Stomach Cancer Sisters on Facebook, another good support group. Everyone is supportive of each other, and they have Zoom meetings so we can meet the other members.

Gratitude for surgeons and oncologists

I would like to give a shout‑out to my surgeon, Dr. Matthew Kilmurry. He has been an amazing surgeon and doctor. He came to see me every day in the hospital. He performed an excellent surgery on me and has been following me. Every six months, we have an appointment. I ended up having to have my gallbladder out last March because people with my operation tend to get a lot of gallstones, and it can be quite painful, so he performed that surgery as well. He does all my endoscopies. He did my colonoscopy. He is an amazing doctor, and I am very grateful to him.

If anyone is going through this and lives in the Kitchener‑Waterloo–Guelph–Cambridge area and is looking for a surgeon, I have to say Dr. Kilmurry is the best.

Dr. Valdez, my oncologist, was the one who advocated for me to get chemo right away. At the beginning, they did not think it was operable, but they took it to the tumor board, and he advocated for surgery, and I am grateful for that.

Advocating for yourself in the medical system

What I have to say about advocating for yourself is this: if your general practitioner is not listening to you or not getting you the proper tests, you have to go to the emergency room and demand a CT scan, because that is the only way they can know for sure. I knew there was something wrong a year before. I did not feel right. I had a strange, sickly feeling I cannot describe. I had never had that feeling before.

I went vegetarian, I quit drinking alcohol, and I did a lot of things to try to get healthy, but I still felt sick. I think we have an intuition about these things. If you have that intuition and feel you are being dismissed, you have to push. It was also during COVID, which made it hard to get in with a specialist. If I had waited for my specialist appointment, I would have died, because they would not have been able to see me until the end of September, and my cancer was growing fast.

Dr. Valdez got me in for chemotherapy in the first week of August. My diagnosis was July 25, and my first chemo was on August 7. That was quick, and I appreciate that, because if I had waited for what my GP had planned, the end of September, that would not have been good. It had already invaded my pancreas, and it would have spread everywhere. You have to act quickly and push for it.

I had asked for a CT scan in the emergency room earlier, but it was not until I told them I was having bleeding that they took me seriously. I do not know why I did not tell them earlier. Maybe I was embarrassed. I was just telling them I had this pain. Once there is blood involved, they have to do a CT scan and get you in.

Amy McC. stomach cancer
Thank you for sharing your story, Amy!

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Categories
Colorectal ileostomy Patient Stories Proctocolectomy Surgery Treatments

Living with Ulcerative Colitis and Stage 1 Colorectal Cancer: Nadia’s Life from Ostomy to Advocacy

Nadia D. colorectal cancer

Living with Ulcerative Colitis and Stage 1 Colorectal Cancer: Nadia’s Life from Ostomy to Advocacy

In November 2022, Nadia, a mother and passionate advocate for digestive disease awareness, was diagnosed with colorectal cancer after living for more than two decades with ulcerative colitis. Her experience highlights both the struggles and triumphs of navigating life with chronic illness and major surgery.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Nadia was raised in Toronto, and her adolescence was shaped by symptoms that would later be diagnosed as ulcerative colitis, a form of inflammatory bowel disease. Her relationship with her gastroenterologist provided ongoing support, resulting in diligent monitoring, including regular colonoscopies. When her symptoms escalated and she began to experience abdominal pain, increased bathroom trips, and blood in her stool, she knew to raise concerns immediately. Despite participating in a clinical trial with close oversight, the diagnosis of low rectal colorectal cancer still came as an emotional blow. Nadia credits clear communication with her care team and self-advocacy for facilitating a timely diagnosis, a crucial factor in patient outcomes.

Nadia D. colorectal cancer

Nadia’s response to her colorectal cancer patient experience was shaped as much by emotional resilience as by medical treatment. Undergoing a total proctocolectomy (“Barbie butt surgery”), she faced fears about the ostomy and its stigma, yet found strength through loved ones and connections with others who had gone through similar surgeries. Support from her family, especially her husband, made physical recovery and emotional adjustment achievable, and the mental health aspect became a central focus.

Living with an ostomy has transformed Nadia’s outlook. Where she once feared leaks and body image challenges, she now embraces open advocacy, sharing her experience on social media to shatter stigma and foster inclusion. Daily life changed but improved, thanks to better control, new possibilities for diet and activity, and a passionate commitment to support others. For Nadia, the colorectal cancer patient experience is about honesty, gratitude, and the courage to live fully and visibly, regardless of scars or supposed imperfections.

Watch Nadia’s video and read through her interview transcript below. You’ll gain more insight into why and how:

  • Listening to your body and fostering trust with your care team leads to earlier detection and improved outcomes
  • Emotional well-being and support from loved ones are as critical as physical healing after cancer treatment
  • Social stigma around ostomies can be overcome by openly sharing stories and empowering others
  • Positive transformation is possible: Nadia’s life became fuller and more authentic following surgery
  • Every patient’s experience is unique, but community, openness, and self-acceptance are essential for healing
  • Name: Nadia D.
  • Diagnosis:
    • Colorectal Cancer
  • Staging:
    • Stage 1
  • Age at Diagnosis:
    • 40
  • Symptoms:
    • Change in bowel habits
    • Rectal bleeding
    • More fatigue and back pain than usual
  • Treatments:
    • Surgeries: total proctocolectomy, permanent ileostomy
Nadia D. colorectal cancer
Nadia D. colorectal cancer
Nadia D. colorectal cancer
Nadia D. colorectal cancer
Nadia D. colorectal cancer
Nadia D. colorectal cancer
Nadia D. colorectal cancer
Nadia D. colorectal cancer
Nadia D. colorectal cancer
Nadia D. colorectal cancer
Nadia D. colorectal cancer

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

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

Transcript of Nadia’s Interview
  1. Hi, everyone, I'm Nadia
  2. I’ve been living with ulcerative colitis, or IBD
  3. Before my colorectal cancer diagnosis
  4. The moment I was diagnosed with colorectal cancer
  5. What my surgery and recovery looked like
  6. After my surgery: adjustments and life changes
  7. My biggest challenges
  8. Marriage, intimacy, and teamwork
  9. Breaking the stigma: living well with an ostomy
  10. What I want others to know

Hi, everyone, I’m Nadia

I’m from Ontario, Canada. I was diagnosed with colorectal cancer in November 2022.

I am a mom. I have two kids. I’ve been married for 17 years now; I married my high school sweetheart. In my spare time, I love to cook and spend time with my family and friends. 

I love advocating for digestive diseases and invisible illnesses, sharing what it’s like to live with an ostomy and colorectal cancer. I truly have a passion for that. I enjoy hearing people’s stories, sharing my own, and connecting with others.

I’ve been living with ulcerative colitis, or IBD

I was diagnosed with IBD, or ulcerative colitis, when I was just 15 years old, a couple of weeks before my 16th birthday. I lived with IBD for about 25 years before my colorectal cancer diagnosis. I went through many trials and tribulations, including medications, nutrition changes, diets, and anything to keep my disease at bay.

Editor’s note: Inflammatory bowel disease (IBD) is an umbrella term that includes conditions such as ulcerative colitis and Crohn’s disease. In this interview, the patient uses “IBD” and “ulcerative colitis” interchangeably. We’ve left their wording intact for authenticity, but note that ulcerative colitis is one specific type of IBD.

I was very lucky to have a good relationship with my gastroenterologist. She began seeing me shortly after my diagnosis, after my initial doctor moved to practice in the United States. She saw me all the way through to my cancer diagnosis. Depending on how my disease was presenting, I would have six-month or yearly follow-up appointments, and then every two years would have a colonoscopy screening.

My gastroenterologist was with me from age 15. She was there for all my milestones, like completing university, getting married, having children, going on vacations, and so much more. We built our own relationship: I’d visit around the holidays, bring my kids to appointments, and so on. After my cancer diagnosis and surgery to remove my large colon, I stopped seeing her since there was nothing more to treat, which was also an adjustment.

Before my colorectal cancer diagnosis

Before my diagnosis, I was experiencing frequent bathroom trips, abdominal pain and cramping, and blood in my stool. That was a huge red flag for me, so I knew something was wrong.

IBD is an autoimmune disease, so it affects my whole body. I often felt very fatigued, run down, and had body aches.

Before my [ulcerative colitis] diagnosis, I didn’t know much about ulcerative colitis. Even right after my diagnosis, I didn’t know too much; I just knew I had to be on medication daily to manage my symptoms. When flare-ups would occur, I had to take a different medication beyond my regular daily dose. It was a lot, especially as a teenager going through adolescent changes. But I felt supported by my medical team and my family.

Because I’d had IBD for so many years, I could tell these weren’t typical flare symptoms. I was really in tune with my body, but for many people, these symptoms aren’t always striking at first, which leads to misdiagnoses. 

At the time of my diagnosis, I was in a clinical trial, being more closely monitored. My gastroenterologist was the primary investigator of that study. I could advocate for myself and was heard, which made a huge difference.

The moment I was diagnosed with colorectal cancer

The colonoscopy results were delayed for five weeks due to an accident at the lab. That uncertainty was stressful, especially since I knew colorectal cancer was a possibility. 

When we finally met, my husband came with me. My doctor was emotional as she told me; then I was emotional, and we hugged.

Honestly, I was more worried about the possibility of an ostomy than the actual cancer because of the stigma I had associated with it. The negative stigma around ostomies was strong in my mind, yet the procedure gave me my life back in many ways. Living with UC was unpredictable, but I want others to know that receiving an ostomy is not the end; it’s a new beginning.

What my surgery and recovery looked like

I had low rectal cancer. Because of the tumor’s location, I wasn’t a candidate for reversal. My surgery was a total proctocolectomy, which is sometimes called “Barbie butt surgery”; they remove everything and close the opening at the back.

Pre-op was overwhelming. I didn’t understand how the surgical procedure worked; questions swirled: could I sit? Wear regular pants? The ostomy nurse was kind and offered to mark and fit a stoma pouch on me, but I wanted nothing to do with the pouch at first. My husband was supportive, and the hospital team was reassuring. I benefited from having two friends who had just had the same surgery with my surgeon; we really connected. 

The fear of the unknown was tough, but my husband helped me communicate everything I was feeling. The morning of my surgery, I was in good spirits because research suggested my mindset could influence recovery. Even as I walked to the operating room, my surgeon chatted with me, noticed my tattoos, and made the atmosphere positive. The anesthesiologist told me to “think good thoughts,” which helped tremendously.

After my surgery: adjustments and life changes

When you have IBD and are symptomatic, you might go to the bathroom 20 times a day. In my hospital room, my roommate was there with a UC flare and kept darting to the bathroom. I realized, sitting in my bed, that feeling was gone for me. Even though I had to learn how to live with and manage an ostomy, I was grateful I no longer dealt with unpredictable flare-ups.

Over three years, it was an adjustment. The beginning was tough. I had lots of body image issues. I got rid of tight-fitting clothes that I thought showed my pouch. I used social media to show that “you can’t even tell that I have a pouch.” There’s a hashtag: #BagWhatBag, because it’s often invisible. 

On social media, everyone knew I had the pouch, but showing it took some time. Eventually, I followed a friend who was more open about showing her ostomy online. When I shared mine, it was freeing. I felt truly myself. Once I started posting photos and fun reels (like “sun’s out, bags out”), it created a freeing sense of openness. From then on, I shared more, even on vacations and at the beach.

A brand I worked with invited me to participate in a photoshoot for their digital marketing. I was honored. It was a chance to normalize ostomy life. Some creators receive negative comments when showing their bags, but our response is always: “This is a life-saving procedure. Without this bag, we wouldn’t be here.”

My biggest challenges

The biggest obstacles are unplanned bag leaks, like at work or a family cottage. Once, just arriving at work, the bag leaked and had to change my ostomy at work; thankfully, before drinking coffee, which worsens everything! I’m a super planner, but leaks taught me to go with the flow. I was lucky that my hospital appliance fit well and avoided leaks in the first year, so adjusting was easier.

Adjusting to in-office work after remote roles was tough, but problem-solving helped me move on. The first year, leaks were rare, which helped me appreciate rather than resent my ostomy. Finding the right appliance is key. Once you do, most leaks and skin issues resolve.

There’s nothing wrong with your stoma or your ostomy or your body or your skin. It’s just finding the product that is right for you.

Marriage, intimacy, and teamwork

Recovery meant pausing intimacy until wounds healed. 

During initial recovery, I couldn’t manage pouch changes myself. My husband did all of them and often helped at night, supporting me when I had to wake to empty my active ileostomy. 

He would say, “If I’m here, why do you have to do it alone?” That support, both mental and practical, made everything easier mentally.

Breaking the stigma: living well with an ostomy

First, here’s a tip: find the right ostomy appliance and fit. That’s a game-changer. The right fit means fewer leaks and better skin health.

Second, take things one day at a time. Feel your feelings, like annoyance and frustration, but don’t let them take over your day or week. Focus on gratitude for this life-saving procedure.

Breaking the stigma means sharing my story and showing everything I can do, like swimming, traveling, working out, and more. Yes, some limitations exist, like diet and specific activities. Overall, though, my diet is much more inclusive now. I can eat spicy food now, which was impossible before.

Even though there are some not-so-great days, there are far more days that are better.

What I want others to know

Wear your ostomy loud and proud. It saved my life and gave me my life back. 

I can do things I couldn’t during UC flares, and productivity at work has improved.

Trust the process. Every day brings challenges, but it also brings wins. Focus on small wins: your first independent appliance change, a longer walk, or any little goal. 

Don’t take on too much at once; don’t overwhelm yourself. Set small goals, enjoy the journey, the process, and have faith.

Nadia D. colorectal cancer
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Categories
Cancers Chemotherapy Metastatic Metastatic Orchiectomy Patient Stories Surgery Testicular Cancer Treatments

Ryan’s Metastatic Testicular Cancer Experience at 25

Ryan L. testicular cancer

“There’s A Whole Life Waiting For You:” Ryan’s Metastatic Testicular Cancer Experience at 25

At just 25, Ryan was thriving as a young actor in New York City, working at Orangetheory Fitness, and fully immersed in his passion for theater. One day in May 2024, he noticed lower back pain, and by the next morning, his left testicle had doubled in size. While visiting family in Arkansas for his great-grandmother’s funeral, Ryan’s father encouraged him to seek care immediately, which led to an ultrasound, a fast urology consult, and a diagnosis that left Ryan in shock. He says, “I always thought cancer was for older people. I was shocked, crying, and couldn’t process it.” Ryan’s testicular cancer diagnosis was about to turn his life upside down overnight.

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

This testicular cancer experience unfolded with rapid decisions and tough emotions. Ryan learned that the cancer had spread to his abdomen, making chemotherapy inevitable following surgery. He faced complications and underwent four intensive rounds of chemo, during which he struggled with side effects like nausea and the loss of hair, stamina, and muscle. The emotional toll was considerable;  he found informing friends and family painful each time, and his self-confidence waned as his body changed.

Ryan L. testicular cancer

Ryan’s testicular cancer story led to an entirely new perspective. Although he had strong support in both New York and Arkansas, much of what he endured felt isolating. Survivorship has been its own challenge, with ‘scanxiety’ lingering and daily routines forever altered. The experience steered him toward advocacy: founding Ballin Studios, he now creates projects to raise testicular cancer awareness and donates proceeds to nonprofit work.

Despite these challenges, Ryan’s testicular cancer experience has also brought personal growth. He now lives more unapologetically, has let go of people-pleasing, and works to create a meaningful community.

Watch Ryan’s video and browse the edited transcript of his interview. You’ll take a deeper dive into how:

  • Early symptoms can be abrupt; act immediately if you notice swelling or unusual pain
  • Self-advocacy and family support are critical to navigating sudden health crises
  • Survivorship can be its own challenge; recovery is more than “beating” cancer, it’s about learning a new way to live
  • Emotional openness can build community and help others feel less isolated
  • Ryan’s transformation: From thriving actor interrupted by diagnosis to fierce advocate and creative community leader
  • Name: Ryan L.
  • Diagnosis:
    • Testicular Cancer (Metastatic)
  • Age at Diagnosis:
    • 25
  • Symptoms:
    • Strange feeling in lower back one night
    • Left testicle swollen to twice normal size
  • Treatments:
    • Surgery: orchiectomy
    • Chemotherapy
Ryan L. testicular cancer
Ryan L. testicular cancer
Ryan L. testicular cancer
Ryan L. testicular cancer
Ryan L. testicular cancer
Ryan L. testicular cancer
Ryan L. testicular cancer
Ryan L. testicular cancer
Ryan L. testicular cancer
Ryan L. testicular cancer
Ryan L. testicular cancer

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

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

Transcript of Ryan’s Interview
  1. Hey guys, my name is Ryan
  2. My first signs and symptoms
  3. Diagnosis process and tests
  4. How I reacted to the diagnosis
  5. Surgery and my next steps
  6. My chemotherapy regimen and its side effects
  7. After my diagnosis versus before it
  8. The impact of my diagnosis on myself, and my daily and social life
  9. Ringing the bell to celebrate remission, and ongoing monitoring
  10. I now do awareness and advocacy work
  11. How testicular cancer has changed my perspective and affected my mental and emotional health
  12. What I want other cancer patients to know

Hey guys, my name is Ryan

I live in New York City, and I was diagnosed with testicular cancer in May of 2024.

Obviously, as an actor, performing and theater are a big part of my life. They take up a lot of my time, so I don’t have too much time for hobbies, but I do enjoy working at Orangetheory Fitness here in the city, and I love to go and work out in those classes. I also like to do a little fun craft now and then. I love a puzzle; I don’t really finish them too often, but I love to start them. 

I’m also a big nature guy. I love to hike, and I love to go in the mountains. We just climbed the Red Rocks a few weeks ago, which was beautiful. You don’t get a lot of that in New York City, but it’s nice to get out and go upstate now and then. 

Besides that, I enjoy hanging out and spending time with my friends and family. Also, I love to listen to podcasts.

I think my friends would describe me as a fun guy, a funny dude, and kind. I would hope a little bit crazy, but I’m also somewhat closed off at first. Once you get to know me, I really open up and just let the crazy out.

My first signs and symptoms

For me, it was pretty immediate. I got diagnosed on a Friday, and the Tuesday before, my lower back felt a little weird. I wondered if it was a UTI or something; it just felt odd. 

The next morning, I woke up and my left testicle was twice its size. 

That’s when I knew I had to get this checked out. It all happened very quickly.

Diagnosis process and tests

It was an interesting story because I live in New York City, but I actually got diagnosed in Arkansas, where I’m originally from. My great-grandmother had just turned 100 a few months before, and unfortunately, she passed away. I got the news on a Monday, and the funeral was set for Friday. I booked a ticket home for Wednesday. That morning, I woke up, and my testicle was twice its size. 

I went to work because I had to open the gym, and I called my dad; my flight was booked for that afternoon. I told him I was freaking out. He told me just to get on the plane and we’d deal with it when I got there. I’m very glad I did that because I was able to be around my family during this time. 

I got on the plane and we went to the emergency room when I arrived at 10:00 at night. They looked at it and said they’d need to do an ultrasound, which I didn’t realize was for anything other than pregnant women. The ultrasound was very uncomfortable. After the scan, they said I’d need to see a urologist. I set up the meeting for Friday, went in with my dad, and almost immediately, after seeing the ultrasound, the doctor said, “Yeah, it’s cancer.”

How I reacted to the diagnosis

I always thought cancer was an old man’s disease; you don’t really hear much about people in their 20s, 30s, or 40s getting it. It was a shock. I cried my eyes out; I was freaking out and didn’t know what was happening. I’m so grateful my dad was with me in the room. I just took it all in and tried to process it. 

Thankfully, the doctor told me that testicular cancer has a 98 percent survival rate. Everything would function as normal, except I’d have one less testicle. 

After hearing that, I was able to process and feel a bit better, but I was not ecstatic.

Surgery and my next steps

The doctor basically told me I could just have surgery to remove the tumor, unless it had spread, in which case we’d discuss further options. I got a CT scan done in the office. By the end of the day, they called and said it looked like it had spread to my abdomen, so I’d need chemo. I said, “Alright. One step at a time, surgery first.” 

Since it was a holiday weekend, they couldn’t schedule surgery until after Tuesday. The doctor told me to show up on Tuesday and they’d fit me in. 

They removed the tumor after a few hours. The first surgery was outpatient, thankfully; I was able to go home and sleep it off. I had some healing complications, so it took an extra two or three weeks to recover. 

We then got a second opinion on treatment. The first doctor suggested a highly invasive surgery to remove lymph nodes. The second opinion recommended trying chemo instead, and we decided to go with chemo; four rounds, and it worked.

My chemotherapy regimen and its side effects

I did about three months of chemo through July, August, and September in 2024. I was 25 at the time.

My chemo schedule was Monday through Friday for one week, about six hours every day, then two weeks off, and then I’d go back. I did that four times, so about three to four months total.

The biggest side effects. My urologist, Dr. Y, gave me two chemo options. One was shorter, three rounds, but carried a chance of permanent lung damage, which, as a singer, I wanted to avoid. I opted for the other, which was one more round, but it’s notorious for severe nausea; people joked about how much they would vomit. I constantly had nausea, took medicine, drank ginger ale, and ate crackers to help suppress it.

After my diagnosis versus before it

I was working and pursuing acting. I had just turned 25 in January, signed with my first agent, and was auditioning and meeting casting directors. I kept wondering why I wasn’t getting callbacks or offers, and even turned some roles down on gut feeling. 

In hindsight, it felt like intuition, as if the universe knew I would need to take a break for cancer treatment. I was in the best shape of my life at Orangetheory Fitness, and I am still fighting to get back there even a year later.

Now, things have shifted. I started a production company here, Ballin Studios, focused on raising awareness for testicular cancer through art, storytelling, and content. We hosted our first show in August; it was a huge success. We have a Christmas show planned for December. 

I’ve really focused on this side of theater, less on performing, but still auditioning. I’ve found a new passion in raising awareness and funds.

The impact of my diagnosis on myself, and my daily and social life

After processing it, the hardest part was telling everyone. Calling my roommate and best friends, telling them I wouldn’t be around for six months because I had cancer, especially after making peace with it, was tough. I didn’t want them to find out on social media, so I had to tell each one personally.

Thankfully, I have a great support system in New York City, with friends and coworkers, and also with family and old friends back in Arkansas. They checked in on me constantly. 

The toughest part was that none of my friends really knew what it was like to go through cancer at this age. After finishing chemo, a good friend of mine was also diagnosed, so I could be there for him and help, which inspired me to start Ballin Studios to try to help others. He’s in remission as well, about eight months now. He had to go through the same surgery and chemo.

As for the impact on myself. I try to laugh about it, even during chemo, but it has affected my confidence. My body changed; I lost the best shape of my life and my stamina. It took a long time to recover. All my hair went away during chemo and hasn’t grown back as thick, which is why I wear a hat a lot. It’s affected my body image, but I’m working on self-acceptance.

Ringing the bell to celebrate remission, and ongoing monitoring

After two rounds of chemo, my oncologist said it was looking great, but I still had to do two more rounds as a precaution. 

My last day of chemo was delayed by Labor Day, but I got to ring the bell once treatment was over. 

The nurses cheered, my mom took a picture, and we finally got to go home.

I just passed the one-year remission mark. I had to switch insurance after turning 26 and am now on New York State health insurance. Now I get scans every six months instead of every three. All scans have been clear, and bloodwork is checked every couple of months.

I get anxiety walking out the door, especially when I pull a muscle or something feels off. I call my oncologist or urologist every time I worry, but usually, I’m fine. I’ve always been a hypochondriac, so it’s a journey to calm myself and not worry unless there’s a real reason.

I now do awareness and advocacy work

Ballin Studios started as the idea for a podcast last January and has grown into a production company producing shows in New York City. They’re more like cabaret shows, and I always use the opportunity to talk about testicular cancer. A percentage of the income goes to the Testicular Cancer Society. We’re launching a podcast soon and want to build a stronger online presence, maybe by filming specials with other survivors who perform.

The name came from seeing a tattoo a guy had with two cherries, one of which was missing, represented by the stem. That inspired our logo and references testicular cancer.

How testicular cancer has changed my perspective and affected my mental and emotional health

I think I do look at life differently now. I grew up a people-pleaser, but now live a bit more unapologetically and gratefully.

This last year in remission has been really tough. Sometimes survivorship is harder than treatment. 

During chemo, I had a clear goal: to survive. Afterwards, rebuilding a new life was difficult, but now, a year later, I’m the happiest I’ve ever been and grateful every day.

To me, survivorship means living my life without letting cancer have power over my emotions or anxieties. It’s about using art, performing, and storytelling to raise awareness and hopefully support other young men facing similar challenges.

What I want other cancer patients to know

When you’re in the thick of it, you just have to get through it and fight, day by day. 

Once you’re through, there’s a whole life waiting for you on the other side. 

Reach out to me; I’m always happy to help. There’s a whole community here if you need it.

Ryan L. testicular cancer
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More Testicular Cancer Stories

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Mikael H., Testicular Cancer (Non-Seminoma), Stage 1



Symptoms: Fatigue, one swollen testicle

Treatments: Surgery (removal and reconstruction), radiation, hormone therapy
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Categories
Chemotherapy Colon Colon resection Colorectal Colostomy Colostomy reversal Patient Stories Surgery Treatments

Finding My Voice: Briana’s Stage 3 Colorectal Cancer Experience

Briana H. stage 3 colorectal cancer

Finding My Voice In the Healthcare System: Briana’s Stage 3 Colorectal Cancer Experience

This stage 3 colorectal cancer story follows Briana’s experience with persistent constipation, colostomy surgery and reversal, chemotherapy, and finding her voice in the healthcare system.

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

Briana was settling into a new chapter of life in San Jose. She had just found her footing in a new job, was deeply involved in her community, and felt like things were finally lining up. Then her body started sending signals she couldn’t quite explain including constipation, stomach discomfort, and a growing sense that something wasn’t right. The symptoms were subtle at first, but they lingered for months.

Doctors initially pointed to common digestive issues. Bloodwork came back, colonoscopy prep repeatedly failed because of an obstruction, and IBS remained the working assumption. It wasn’t until Briana pushed for answers during a final ER visit that a CT scan revealed the real cause: a tumor blocking her bowels. She was diagnosed with stage 3 colorectal cancer. “You don’t expect cancer,” she says. “It’s really unknown territory, so the shock was real.”

Briana H. stage 3 colorectal cancer

The path to diagnosis became a lesson in persistence. Briana’s refusal to back down, even when faced with skepticism, led to the truth. Her stage 3 colorectal cancer experience rapidly escalated: hospitalization, immediate surgery, and the sudden need to adapt to a colostomy bag all came with emotional and physical hurdles. Surrounded by supportive friends and family, with her best friend at her side and her mother flying in, Briana confronted a new reality marked by fatigue, wound complications, and infection in the initial recovery period.

Chemotherapy brought another layer of adaptation, with both IV and oral regimens producing hair loss, nerve pain, and unexpected side effects. After months of treatment, Briana celebrated “no evidence of disease” with milestones and new rituals, such as a new hairstyle and a tattoo. However, survivorship, she emphasizes, also brings anxiety and an ever-present uncertainty. She lives in six-month increments now, but is committed to staying present and trying new things.

Throughout her stage 3 colorectal cancer experience, Briana found strength in support groups, fellow young survivors on social media, and her own voice. She encourages anyone navigating similar paths to advocate fiercely for themselves. “Nobody knows your body the way you know your body, and if you feel something is off, keep finding someone who will listen,” she says.

Watch Briana’s video and browse the edited transcript of her interview. The video and transcript will provide insights, including:

  • Why you should advocate for yourself persistently, especially when symptoms are dismissed or misdiagnosed
  • How important it is to listen to your own body; self-knowledge can be vital for survival and diagnosis
  • Why emotional adaptation is just as essential as physical recovery in cancer care
  • How visibility and self-acceptance around medical changes, like a colostomy bag, can empower others and reduce stigma
  • About Briana’s transformation: From self-doubt to vocal, resilient advocate for herself and her community
  • Name: Briana H.
  • Age at Diagnosis:
    • 31
  • Diagnosis:
    • Colorectal Cancer
  • Staging:
    • Stage 3
  • Symptoms:
    • Periods of constipation initially lasting one week and then extending to two weeks
    • Nausea
    • Pain in lower left abdomen
    • Lack of appetite
    • Vomiting and inability to keep fluids down
  • Treatments:
    • Surgeries: colon resection, tumor removal, colostomy placement, colostomy reversal
    • Chemotherapy
Briana H. stage 3 colorectal cancer
Briana H. stage 3 colorectal cancer
Briana H. stage 3 colorectal cancer
Briana H. stage 3 colorectal cancer
Briana H. stage 3 colorectal cancer
Briana H. stage 3 colorectal cancer
Briana H. stage 3 colorectal cancer
Briana H. stage 3 colorectal cancer
Briana H. stage 3 colorectal cancer
Briana H. stage 3 colorectal cancer
Briana H. stage 3 colorectal cancer
Briana H. stage 3 colorectal cancer

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

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

Transcript of Briana’s Interview
  1. I am Briana
  2. Before my diagnosis
  3. When my early symptoms started showing up
  4. My situation escalated and I got diagnosed
  5. How I reacted to the diagnosis
  6. My surgery and the challenges I faced afterward
  7. Adapting to a colostomy bag
  8. Chemotherapy and its side effects
  9. Progress with chemo and colostomy reversal surgery
  10. I was declared no evidence of disease
  11. Personal celebration and moving forward
  12. Perspective and life changes after cancer
  13. My advice for others
  14. Cancer and diverse communities

I am Briana

I was diagnosed with stage three colorectal cancer in October 2024.

I love traveling, exploring new places, and being out in nature. I love going to concerts, always trying to see my favorite artists live. I enjoy hiking, camping, planting trees, and working in the environmental sector. I really try to stay connected with nature in every way possible.

My friends would probably describe me as the sarcastic one. I always give them a hard time, but I’m always present for them and always down for anything, whether it’s going out and trying new foods, attending a show, or an improv event. I am always one who’s ready to go out and do something.

Regarding the photos I’ve submitted, there’s one specifically from Seattle, which is one of my favorite cities to visit. I’ve been there twice, and if I were to move out of California, that’s likely where I would go. There’s also a photo from John Muir Woods, which represents what I like to do in my free time.

Before my diagnosis

Right before I was diagnosed, I had just started a new job in local government. I felt like I had finally reached stability in my life, career-wise and economically. I’m originally from Southern California, but I’ve built a home for myself here in the Bay Area. I felt like I was reaching that place where I could start working on other projects I’ve wanted to pursue.

I was beginning to look into organizations where I could volunteer my time as a board member or committee member. I was researching how to get more involved with organizations such as Latino Outdoors, which organizes outdoor outings for the community. Being active in that space is very important and dear to my heart. I was just starting to get more involved when I began having symptoms, which were very mild at first. I definitely did not think it was going to be cancer. It was unknown territory, so it was quite shocking.

When my early symptoms started showing up

My first symptoms were mild; you don’t expect cancer, and it was really unknown territory for me, so the shock was real.

The first symptoms appeared about ten months before my diagnosis. It started as mild constipation, and it felt like I wasn’t able to digest food. The day before Christmas Eve in 2023, I felt like I couldn’t process any food, ended up throwing up that night, and spent the whole night in the bathroom. That was my first trip to urgent care. They did a urine analysis and blood work, told me everything looked fine, and suggested it was just an upset stomach. I was told to stick to bland foods and given nausea medication.

The symptoms settled after that, but kept coming back in episodes. In April and May, the symptoms recurred and would last about a week at a time. I started visiting my primary doctor and repeatedly told him that, although it seemed like constipation, it didn’t feel normal. I was also having pain in my lower left abdomen. Blood work was done; I was found to be anemic and started on iron supplements, along with IBS medication. The initial thought was maybe it was IBS.

At the end of June 2024, my symptoms got much worse. Despite seeing my doctor, nothing got better. I remember driving to my appointment with a trash bag in my lap because the nausea was so bad. The symptoms were getting brushed off as IBS, and I was given stronger IBS medication and told to try Miralax, but there was no real solution.

Eventually, I was referred to gastroenterology and scheduled for a colonoscopy. By then, the tumor was already blocking my bowels, and I couldn’t do a proper bowel prep. The first colonoscopy was canceled because the prep made me very sick; I vomited the entire night. I got rescheduled with a different prep, but the same thing happened, as it was still blocked. Even after waking up from sedation at the clinic, they told me to go home, redo the prep, and come back tomorrow. Trying the prep again upset my stomach, and I couldn’t keep water or food down for days. I finally went to the ER at the end of August, received nausea meds, and was sent home. At that point, I didn’t want to schedule another colonoscopy. I wanted to talk to an actual doctor.

My situation escalated and I got diagnosed

In September, I tried to do a follow-up. By the second to last week of September, I was getting really sick again. The final week, I had to go home early from work and never returned. That Tuesday, I started throwing up again and couldn’t eat or drink. I went to the ER Thursday night after days without food or water, begging for a CT scan. The ER doctor advised me to go to my primary doctor the next morning for a scan request, but I was already in pain and didn’t want to wait.

By morning, I was throwing up again and couldn’t go to work, spending sixteen hours on the couch in pain until my friend showed up and insisted on taking me to the ER. A different doctor listened to me, took note of all my symptoms since December 2023, and said, “Let’s get you stable first, and then we’re going to start running tests.” They gave me a CT scan, and that’s when it was discovered. 

How I reacted to the diagnosis

After the CT scan, the doctor explained they couldn’t definitively say it was cancer, but they were 95% sure and needed to do a biopsy for confirmation.

It was a sense of relief to hear the diagnosis, not because I wanted to hear those words, but because I knew I wasn’t going crazy; something was seriously wrong with my body. It has always been difficult for me to stand up and speak for myself, so this was a new experience. I wish I’d advocated for myself sooner, especially after my first colonoscopy, by insisting on alternative testing, since my body couldn’t process the prep for a proper colonoscopy.

I’ve been open about my cancer journey with friends and family, and I always emphasize that nobody knows your body the way you do. If you feel something is not right, and they’re brushing you off, keep looking for someone who will listen, because that person is out there. It’s important to listen to your body and find a doctor who listens, too. Sometimes we hold back from advocating for ourselves because we don’t want to be that squeaky wheel or rush the doctor, but when your life is on the line, it is crucial to speak up.

That’s why we pay into health insurance and have a healthcare system. It’s not perfect, but we have a right to use it and advocate for ourselves. Listen to your body, more importantly than anything. It took time for me to speak up, and I wish I had done it sooner. I learned during my hospital stay that learning to speak up for yourself is a whole different environment as well.

My initial thoughts were, “Okay, what’s next?” There was a lot to process. Because I had been in pain and brushed off for so long, my first response was, “Alright, we figured it out. I’m not crazy; something is wrong with my body. What do we need to do next?” The doctor told me surgery was imminent, and I was not going home, but was being admitted to the hospital.

The hardest part wasn’t hearing the diagnosis, but having to tell my loved ones what they found. Luckily, my best friend was with me when I was told, and my family was already making arrangements to come out and be with me.

My surgery and the challenges I faced afterward

Once admitted, I met the surgery team responsible for removing the mass and placing a colostomy bag. That was a big adjustment. It took about a week from surgery to get the official diagnosis from the lab. Once confirmed as stage 3, I was referred to the oncology team.

I did not get the surgery the night I arrived. That happened two days later, at that hospital. I arrived Friday night, the mass was discovered Saturday morning, and I had surgery Monday night. After surgery, I went home for a few weeks, then met with a new oncology team.

I spent about two weeks in the hospital after surgery because my body was in such poor condition. My heart rate was high, and I was transferred to the telemetry unit for continuous monitoring. I had a couple of blood transfusions, daily X-rays and blood draws, and spent a few days on oxygen. An additional procedure was required for a JP drain due to fluid buildup, causing infection. Even post-surgery, the hospital stay was rough.

I went home for about a week, but needed to be readmitted for another week because of a secondary fluid buildup. I required a second JP drain and then a wound vacuum for leakage into my wound from the colostomy bag. That first month was extremely difficult.

There was no time to process everything; it was very hard to compartmentalize. It wasn’t until a week after surgery, when I got the official diagnosis, that I broke down crying, and it became real. It wasn’t just surgery and done. There were many steps afterward, and this was only the beginning of recovery.

For the first week and a half, I was on autopilot, dealing with pain, nausea, adjusting to life with a colostomy, and the painful wound vacuum changes. There was no time to sit with my thoughts or emotions and really process what had happened.

Adapting to a colostomy bag

I remember the surgeon asking if I was ready to live with a colostomy bag. My answer was no; no one is ready for that. But when your life is at risk, you take the best outcome, even if it means living with a colostomy bag. They did let me know it could be reversible.

It took a while for me to even look at it and to process what’s normal or not regarding movement. You don’t know what to look for at first; you technically have your intestine outside your abdomen. Learning how to change it, maintain it, keep the skin healthy, and be in public with it was a huge learning curve. 

I eventually learned to dress as I did before and found ways to style clothes for access to the bag. I reached a point where I didn’t care if someone saw it; it’s my body, and it is what it is. If someone asked, I told them. 

I learned to change out the bag and the whole system by myself. My mom was my primary helper at the beginning, but we reached a good place. 

It has since been reversed.

Chemotherapy and its side effects

Healing from surgery took longer than expected, so I started chemo about three months post-op, literally the day before Christmas Eve, a year from my first urgent care visit. I did eight rounds of chemo: four rounds of both IV and oral chemo, followed by four rounds of oral chemo. Oral chemo could be done at home.

The biggest side effect was hair loss. I lost about 50% of my hair, and it thinned significantly. 

During my first chemo session, the first hour was bearable, but then my hand stiffened, pain set in, and I realized how painful the administration process was. My arm was sore for days after. 

But the side effect that bothered me most was laryngospasms. The muscles of my throat would spasm with anything colder than room temperature or even slightly warm. I could only drink hot liquids, which was a challenge since I preferred iced coffee.

This side effect lasted for days and often recurred for two weeks, until the next round of chemo. For about four months, I only drank hot beverages.

Progress with chemo and colostomy reversal surgery

After about three or four months of chemo, we saw progress. My oncologist gave me the option of stopping chemo and starting monitoring, but I opted to continue oral chemo for another three months for my own peace of mind. 

Once I finished chemo on June 1st, I was scheduled for my colostomy reversal at the end of August.

I had a colonoscopy to ensure I was ready for the surgery, and it was successful. There was no mass blocking my bowels. The first few days post-op were rough, and being back in the hospital brought back memories. The days felt endless, which was mentally challenging. It was hard getting used to my body again, but I went home about four days after surgery and monitored my recovery from there. 

Eight weeks after surgery, I was back to work full-time and resumed almost all normal activity.

I was declared no evidence of disease

After chemo ended, I had a CT scan showing no evidence of disease. 

I had already seen my results online before my doctor delivered the news, so it was somewhat less surprising but still very reaffirming to hear directly from my oncologist, “There’s no sign of disease.” We now move into monitoring for the future. It was a good conversation.

I also do quarterly blood work through Natera, a third-party company partnered with my hospital, checking for any traces in my bloodstream. All results have been negative. 

Currently, I’m on a monitoring schedule for the next five years, with CT scans every six months for three years, then hopefully moving to annual checkups afterward.

I didn’t get to ring the bell for finishing treatment, as my hospital didn’t do that, and a lot was conducted virtually. My oncologist reiterated that they can’t guarantee zero cancer in my body, but now it’s about monitoring for recurrence. I celebrated in my own way.

Personal celebration and moving forward

This past week was my official first anniversary since my diagnosis. 

It’s not really a day to celebrate; it’s not exciting, but when your life changes so completely, it shifts your perspective. There’s anxiety and depression, even in survivorship, so I did things to keep my spirits up: I dyed my hair, went to dinner, played trivia with friends, and got a tattoo for fun. 

I am really trying to embrace this new chapter and not lose myself to the diagnosis. There is always some anxiety about recurrence, but I try to live in six-month increments, responsibly yet fully.

Perspective and life changes after cancer

I look at life differently now. I think about what I want to do every year, what impact I want to make, and how I want to show up in my community. Being present is a priority. I’m finally exploring grad school, having just started the application process. I try not to let my diagnosis stop me from doing things I’ve wanted to do.

When your mortality is in limbo, you realize many things aren’t as serious as you might think. I am more forgiving, both with myself and others, and more action-oriented. Long-term planning is difficult due to the unknowns, but planning for the future helps keep me present and moving forward.

Before my diagnosis, I struggled with anxiety, but not enough to seek help. When they changed my chemo regimen, the oral chemo side effects were less physically overwhelming, but that’s when the emotional weight set in. I began feeling depressed and anxious daily. With compromised health, going out in public caused anxiety; so did caring for my colostomy bag, thinking about returning to work, and worrying about getting better or what would happen if I didn’t.

Eventually, I sought help through regular therapy, which helped, but was still challenging. I searched for support groups for colon cancer and young adults, but could not find any locally. Connecting with others on social media helped, yet sometimes reminded me that not everyone has the same outcome. Finding a community that understands you, especially in such a challenging stage of life, is difficult.

My advice for others

I have a large red birthmark on my left arm, so I grew up used to stares. Adding the colostomy bag didn’t feel like a huge change from what I was already used to, but the struggle is internal. Looking in the mirror and seeing a bag takes adjustment, especially when you begin handling changes yourself.

Eventually, you become comfortable with yourself and your body, making it easier to go out in public and speak up for yourself. If you care for yourself, it doesn’t matter if others don’t understand—it’s not the end-all, be-all. My colostomy bag saved my life, so I am grateful for it. Even my young nephews understood the process, so adults can learn too.

Connecting with content creators and influencers with colostomy bags on TikTok and Instagram helped me immensely; seeing others being open about their journeys helped me accept mine.

Advocate for yourself, especially in medical settings. This journey isn’t easy, regardless of stage or prognosis. What also helped was having a friend who had been diagnosed a month before me; we constantly checked in. It’s important to unapologetically vent and be outspoken about what you’re feeling. Your feelings are valid. Sometimes you just have to ride out the motions before it gets better.

Cancer and diverse communities

Coming from a first-generation Latino household, I was the first in my family to be diagnosed with cancer at this age. One early struggle was being the main translator for my parents, since they were my main caregivers in the hospital. Navigating all the procedures, listening to doctors, and translating everything was a challenge.

For those who grow up translating for parents, it becomes routine, but repeating everything that’s happening to you is difficult. This was a real barrier during hospitalization. Having my mom as the main caretaker required me to help her as well.

Support within cancer communities is needed, not just by cancer type or age group, but also by ethnicity. More tailored groups could help address treatment barriers, translation services, fertility questions post-cancer, and life with colostomies. I’m still figuring out my place in support groups, especially now as a survivor and not in active treatment; there is still a lot of emotional turmoil.

Briana H. stage 3 colorectal cancer
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Categories
Antibody-drug conjugate Cancers Chemotherapy Chemotherapy port installation Gastrectomy Gastric Adenocarcinoma Immunotherapy Metastatic Metastatic Patient Stories Stomach Cancer Surgery Targeted Therapy Treatments

Stage 4 Stomach Cancer Surgery at 28-Weeks Pregnant: Arelly’s Surprising Story

Arelly R. stomach cancer

Stage 4 Stomach Cancer Surgery at 28-Weeks Pregnant: Arelly’s Surprising Story

When Arelly received her stomach cancer diagnosis, a look back at her experience revealed just how critical awareness and advocacy are for patients navigating troubling symptoms. Her life as a mother and wife was upended in early 2024, moments after surgery exposed a malignant tumor. Her case underscores the urgent need for better screening and listening to every patient’s voice, particularly for symptoms like fatigue and persistent pain in individuals who are often told they’re “too young.”

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Initially overlooked by medical providers, Arelly’s symptoms, including pain after gallbladder removal and unusual exhaustion, were attributed to routine postpartum changes. Yet, a growing mass during her third pregnancy drove multiple ER visits and eventually life-saving surgery. The path to her stomach cancer diagnosis was marked by self-advocacy, perseverance, and partnership with her husband, who documented her symptoms and supported her emotionally through critical hospital stays.

Arelly R. stomach cancer

Family remains Arelly’s anchor and inspiration. Her experience balancing motherhood and cancer treatment highlights the unique challenges facing patients with young children. She describes learning to cherish “sunshine hour” visits, communicate openly with her kids, and plan family time around her treatment cycles, showing that quality of life is built on routine moments together. Online communities and peer support have helped her process grief and find solidarity with other patients.

Arelly now advocates for early screening and self-kindness, urging others to use their time well and embrace lessons learned. Her words, “Time is your biggest asset,” aim to empower those facing gastric cancer to prioritize courage, connection, and compassion in redefining their experience.

Watch Arelly’s video above and read through the edited version of her interview transcript below for more on how:

  • Listening to one’s body and advocating for answers is vital when symptoms are overlooked or dismissed
  • Family support, routine, and open communication are crucial in balancing treatment and parenting
  • Community connections with other patients provide essential emotional support and solidarity
  • Time spent with loved ones is the most valuable asset for any patient
  • The experience transformed Arelly into a stronger advocate, teaching her to value mindfulness and kindness in daily life
  • Name: Arelly R.
  • Diagnosis:
    • Stomach Cancer (Gastric Adenocarcinoma)
  • Age at Diagnosis:
    • 38
  • Staging:
    • Stage 4
  • Symptoms:
    • Nausea
    • Blood in stool
    • Side pain
    • Extreme fatigue
    • Excessive burping
  • Treatments:
    • Surgeries: gastrectomy, port placement
    • Chemotherapy
    • Immunotherapy
    • Targeted therapy: antibody-drug conjugate
Arelly R. stomach cancer
Arelly R. stomach cancer
Arelly R. stomach cancer
Arelly R. stomach cancer
Arelly R. stomach cancer
Arelly R. stomach cancer
Arelly R. stomach cancer

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

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

Transcript of Arelly’s Interview
  1. My name is Arelly
  2. First red flags during my pregnancy and postpartum
  3. Symptoms that were overlooked or misattributed
  4. Feeling dismissed by doctors, and taking the H. pylori test
  5. Why early screening and advocacy matter so much
  6. Advocating for myself in the emergency room
  7. My husband’s support and documenting the tumor
  8. Hearing “cancer” while pregnant
  9. How I knew something was wrong before I got diagnosed
  10. Motherhood, hospitalization, and protecting my kids emotionally
  11. How cancer affected my identity and personality
  12. Quality of life, treatment cycles, and everyday joys
  13. Hair loss, body changes, and rediscovering myself
  14. Holding on to small happy moments
  15. Finding stomach cancer community and online support
  16. Time, identity, and redefining what matters
  17. My final message: forgiveness, kindness, and changing the world

My name is Arelly

I was diagnosed in late February of 2024 with gastric adenocarcinoma.

I grew up in Orange County and had a pretty happy childhood. My parents made it a point to go on vacation to Mexico every year, which is where my family is from, so I have really good, embedded roots there. I have three kids, and I am married. We just had our fourth anniversary last week.

I love to scrapbook. We love nature and visiting national parks. That is kind of our hobby, or was our hobby before I got diagnosed. We love music and going to concerts, and we spend a lot of time doing that as a family. Family is really important to me, and so is spending time doing things that I love, like music and the arts.

We saw Bruno Mars, and that was an amazing experience. We have seen Alicia Keys, Coldplay, and others. That was all pre‑diagnosis, and post‑diagnosis, I am like, okay, we have to see this person and that person. Bruno Mars is the number one.

I love shows that don’t allow recording because they make you be in the moment. We are on our phones all the time.

First red flags during my pregnancy and postpartum

The beginning for me really starts with my middle child’s pregnancy, my toddler, who is going to be four in May. I had a CT scan that was normal, and that pregnancy looked normal on paper. I had a lot of pain during it, but overall, everything was considered fine.

After I gave birth, I went through all the postpartum things. I ended up having my gallbladder removed about a year after he was born. It was via C‑section, and I was having a lot of pain on my right side. They removed my gallbladder, but after the removal, I was still having pain. I kept saying, “I am still having pain on the right side,” over and over. They would answer, “That is normal because you just had surgery.” Anytime I brought up a concern, it was, “That is normal.” Stomach issues were explained away as part of learning to function again without that organ.

My husband and I wanted to grow our family, so we decided to try for another baby. I had a miscarriage and then got pregnant again. Everything seemed to be flowing. I was not feeling anything out of the ordinary, just tired. I had a toddler, and I was pregnant. Then, out of nowhere, I had a mass protruding out of my umbilical area.

I kept bringing it up at my OB appointments. They said it might be a hernia, but they were not sure. They would just check it and send me on my way. As my stomach continued to grow, the growth pushed the tumor out more, to the point where I had two ER visits. On the last ER visit, there was leakage from the mass. That leakage concerned the surgeon enough to say, “We have to take this mass out. We do not know what it is. Your baby is going to be fine, but we need to remove it.” I was about 28 weeks pregnant in 2024.

The next day, they removed around a 15 cm mass. They told us it was a malignant tumor. That was when my OB recommended transferring my care to another hospital that could handle both the high‑risk pregnancy and the new cancer diagnosis. Hearing the word “cancer” and then “stage four,” and then phrases like “three to six months to live,” was devastating. I had pregnancy, postpartum, symptoms that mimicked postpartum, and a recent gallbladder surgery, all happening around the same time. It is all masked within everything you are already going through. It felt like we hit a wall, everything slowed down for a second, and then everything picked back up again. We have just been running with it since.

Symptoms that were overlooked or misattributed

The most prominent symptom was fatigue — extreme, extreme fatigue. There was one time when I had blood in my stool. I assumed it was hemorrhoids because I was pregnant, so that is what I told myself. Besides that, I cannot pinpoint anything dramatic. I did not have constant headaches, and if I did, I would think it was something like high blood pressure from pregnancy.

Mostly, I was just always exhausted, physically and mentally. Later, the symptoms became more visual. I could feel and see something strange in my belly. Looking back, I would also include the right‑sided pain, which I had treated as “normal” because I had been told it was normal after gallbladder removal. Now, when I talk about it, I can see that pain is a symptom too.

Feeling dismissed by doctors, and taking the H. pylori test

I do feel like I was dismissed at times, although there were also moments that made me think, “Why are they ordering this?” After my gallbladder removal, I kept going back to my regular doctor, saying, “I am feeling these things again. What is going on?” After I complained three or four times, he finally said, “Let me give you this H. pylori test.” I did the test before I got pregnant with my third, and it came back negative.

I know H. pylori can be a cause of some gastric cancers, but I do not really sit and wonder what caused mine or what I could have done differently. I do not ponder that because there is no point. That is the one thing he did, ordering that test.

Around the same time, my best friend had just gone through her own journey with breast cancer while pregnant, so I was very cancer‑aware. She is a survivor now, but back then, it was very fresh. I told my doctor, “My friend just had breast cancer. When should I get checked?” Instead of something like, “You should start at this age,” he said, “You know cancer is not contagious, right?” I remember freezing and thinking, “That is not what you are supposed to say to me.” I do not know if he realized he said it like that.

It was during COVID, and many appointments were by phone or in rushed in‑person visits. I do not want to say I lost trust in doctors, because there are amazing care teams out there, like the team I have now; but they are human, and sometimes they just do not see things or think about them. That comment and the repeated dismissal of my symptoms made me step back and lose trust in some of the medical staff at that time.

Why early screening and advocacy matter so much

That whole experience ties into how I feel about screenings, especially for gastric cancers. Screenings are so important. Right now, I am very passionate about advocating for earlier screening, because we are seeing cancer in younger people so often. That is one reason I do things like this: to create awareness that you are never too young to get cancer. Children get cancer. So why do we have these strict age protocols telling us when we “qualify” for colonoscopies, endoscopies, mammograms, and so on?

We need to take into account people’s histories and symptoms and what patients are actually saying. If someone keeps saying, “This does not feel right. I feel this and this,” that should matter. Doctors have the expertise; we do not. We are the patients. They are there to help us and to listen.

Advocating for myself in the emergency room

By the time I was going to the ER repeatedly, my advocacy became very simple and direct. It was like, “I am here now. I was here two days ago. You sent me home. I cannot be sent home today. Please, what is going on? Please take a look at this.”

It is important to be able to say, “I know my body. I know what is normal and what is not. Please listen.” The sad part is, I have heard many stories from people I have met in the stomach cancer community who said all those things and still were not heard.

So a lot of it becomes repetition: “This is not right. This is not right. Please look into this. What tests can I take? This is not my normal.” At one point, I was literally saying, “Look at this. This is not normal,” because sometimes they would not even physically examine me, just listen and move on. It was crazy.

My husband’s support and documenting the tumor

My husband has been such a key part of this. In the beginning, he took a lot of pictures of the tumor. It is funny because we have different sets of photos. I have certain pictures in my phone, and he has others in his. He took pictures of the tumor as it progressed. I did not want to look at them; I did not want to even see my own belly button with the tumor pushing out.

He did it so that when we went to the ER and doctors needed context, he could say, “This is what it looked like a week ago, and this is what it looks like now.” That helped us show that things were not improving; they were getting worse.

The last time we were at the hospital before they removed the 15 cm mass, the mass looked red. In the report I read later, they said it was infected. It had gotten to the point where the surgeon on call around 7 p.m. was worried about sepsis. He said, “Whatever it is, we have to take it out, because you can die of sepsis.” Hearing “sepsis” before hearing “cancer” out loud was very scary.

My husband has always been there, especially when I could not articulate or face certain realities. When I had blood clots, he would take pictures to track whether they were getting better or worse. He tried not to panic, because if he panics, I panic. He is the calm, and I am the “That does not look right” person. We really balance each other out in that way.

Hearing “cancer” while pregnant

By the time I officially heard “This is cancer,” I had already had major abdominal surgery while pregnant. I was barely moving and barely conscious in a small hospital room. I already had a feeling it was cancer. My OB called me because he was not at the hospital. He said he needed to come talk to me. I said, “I already know. Can you just tell me?” He did not want to tell me over the phone, but I insisted, and he finally said it looked like cancer and that he wanted to transfer me to UCI.

Once I was transferred, it became a night‑and‑day difference in care. They monitored me around the clock because they had two lives to keep stable: me and the baby. At UCI, there was a team of about ten people involved: baby specialists, oncology teams, and people focused on post‑surgery recovery. They were constantly checking me and checking the baby, trying to figure out exactly what type of cancer it was.

It was overwhelming. Sometimes there would be ten to fifteen people in the room in white coats talking to me at once. Even now, my husband and I sometimes sit in the quiet when the kids are asleep and ask, “Is this life even real?” It still does not feel real sometimes. I can picture myself in that hospital bed, in pain, with everyone talking, and I am half-listening, half-tuning them out because it is too much to process.

How I knew something was wrong before I got diagnosed

I had a sense that something was going on with me even before the big tumor showed up. Because I am over 35, I had NIPT testing during my pregnancies. It is genetic testing for the baby, and everyone thinks of it as a gender test, but it looks at more than that. With my third son, Benjamin, I had to do the test twice, and both times it came back inconclusive.

When I spoke with the genetic counselor and looked back at the report, there was a note at the bottom saying they could not get genetic information for the baby because something in the mother’s DNA was impeding it. Of course, I went online and started researching why other people’s NIPT results were inconclusive. I went down that rabbit hole and started wondering if something was going on with me.

I was also dealing with a lot postpartum with my middle child and was already in counseling. A lot of my biggest fears centered around not being able to take care of my children and something happening to me so that I would not be there for them. Looking back, I feel like my subconscious was preparing me, telling me this might be my reality.

The fact that the NIPT had been normal for my toddler but not for the baby also gives me a rough timeline. I know that in one year, I likely did not have cancer, and by the next, I did. That shows how quickly this type of cancer can progress. The type I have is rare and spreads like fire.

Motherhood, hospitalization, and protecting my kids emotionally

When I first got my diagnosis, I did not worry about my unborn son’s safety as much as you might expect. I felt deep down that he would be okay. I did not even focus much on myself. I just had this feeling, pregnancy‑wise, that he would be fine.

What crushed me more was being away from my older two kids for those two weeks in the hospital. My oldest was around seven, and my son was about one and about to be two. They did not really know what was going on. All they knew was that Mommy and Daddy had disappeared to the hospital for a long time. My parents and family stepped in and cared for them.

There were lots of video calls. We would tell them, “Mommy is at the hospital,” but I did not say, “Mommy has cancer.” They do not know what that is. We just tried to reassure them that I would come home soon.

When I started feeling better, the hospital had a “sunshine hour” where I could go outside for an hour, even while hospitalized. I would be hooked up to my IV while my husband wheeled me outside in a wheelchair. The kids would visit, and we would sit together and have something like a little picnic or cafeteria time as a family. I was still pregnant and recovering from surgery, but those visits meant a lot.

Eventually, I came home, and we focused on spending as much time together as we could before chemotherapy started while I was pregnant. I had a port placed, went through endoscopies, colonoscopies, and other testing. I got to be with my kids before Arthur was born.

After that, life became chaotic. There is the cancer itself and being a cancer patient; there is also being a mom of three, with two of them being two and under. That balance is what has kept me going. They are my motivation. I still deal with a lot of mental battles, but they keep me grounded.

How cancer affected my identity and personality

Cancer does not just attack your body; it attacks your personality and who you thought you were. I am in the middle of figuring out who I am now, accepting that I am a mother of three and also a terminally ill person who has to think about leaving all these things behind. That is something no one prepares you for. Almost as soon as you get a serious diagnosis, people start asking about your “dying wishes.” I have not confronted all of that. I process it in small pieces.

People who are not in this situation will say, “Take lots of videos. Take lots of pictures. Live your best life.” And I do try to do those things, but I am also so tired. So I focus on quality time. I want my kids to remember that when I felt okay, I was present with them. I know there are many days when I am knocked out after treatment and just have to rest, but when I do feel okay, I make an effort to say to my husband, “Let’s do something with the kids this weekend,” even if it is just the zoo or the aquarium.

I also had to tell my oldest daughter the truth at some point. She is going to be ten, and she is very aware. I was diagnosed in late February, but I waited until school was out around May or June. I wanted her to finish the school year without that weight. Over the summer, I told her, “Mommy has cancer,” so we had time to talk and for her to process it. Just yesterday she said, “Mom, I wish you did not have cancer,” and I told her, “Me too, baby.” I am glad she knows. I do not want her to feel, later on, that I hid it from her. With the little ones, it is different. My three‑year‑old just knows I am sick and that I go to the doctor, and that I have a port he can touch. He does not understand cancer.

Quality of life, treatment cycles, and everyday joys

Quality of life has become central to how I navigate treatment. Over time, you become an expert in your own body. I know my regimen: I get treatment every three weeks. The first week tends to be okay, the second is usually the worst, and then I get a few better days. We plan our lives, and especially family outings, around those better days.

On days when I am present, I try not to overthink it. We just do normal things: read a book together, work on my son’s preschool projects, or scrapbook with my daughter. I have always loved scrapbooking, and now I am teaching her how. Communication with my husband is key. I will say, “These are the days I think I’ll feel okay; let’s try to do something then.” Sometimes it does not work out, and the day is worse than expected. In those cases, I try to give myself grace and accept that it is okay not to feel well.

My husband has also been a 100% caregiver through this, and I admire him so much. He potty‑trained our toddler, handles diaper changes, and takes care of both the kids and his wife with a terminal illness. I try to remember to ask him, “How are you feeling?” because he rarely gets a break. When he does get a break, I am thinking, “Who takes care of the kids then?” Our parents help as much as they can, but they are older, and we try to save that help for when it is really necessary.

We also try to carve out time for our marriage, not just parenting. On good days, we might go to a concert or try to do something just for us. When I am feeling okay, I will say, “You take a break,” and I will be the supervising adult once the kids are asleep, hoping my body cooperates and there are no emergencies.

Hair loss, body changes, and rediscovering myself

My first year of treatment was strange in that I did not lose any hair. I did not look like what people imagine a cancer patient looks like. There is no one “look,” but society tends to picture someone thin, frail, and bald. I am a heavyset woman, and I still had my hair then, so I did not fit that picture. Then I started a new treatment, and with the very first infusion, I lost all my hair. That was when it really hit me.

Hair is wrapped up with identity. You think you will not care that much, but you do. Chemo also makes you exhausted and changes your skin. I will look back at a picture of me when I was pregnant and see this glow. Then I look at myself now, and I look different. I often put on makeup, and my husband will ask why. I tell him, “I do not want to feel like I am dead.”

It is not just physical. A heavy diagnosis brings heavy thoughts. You have to confront things like death and how it might happen. I was preoccupied with that in the beginning. Now I try to avoid overly dwelling on it. When I feel myself going down a bad spiral, I let myself feel it fully for a day. I ask, “What else have I been holding back? What else do I need to feel?” I let it all out. The next day, I say, “That was yesterday. Today is not going to be that day,” and I try to start over with better energy.

Holding on to small happy moments

Happy moments now are usually small things that might be easy to miss. I used to love cooking. That was my love language. If my husband liked noodles, I would think, “Let me make this noodle dish,” and it made me happy. Earlier this year, I had ascites so badly that I needed to be drained twice a week. I could not walk or even shower on my own sometimes, let alone cook. Cooking was just not possible.

When I do have a day where I can cook, it feels huge. I notice it, and my daughter notices it. She will say, “Mom, thank you for this food,” and I recognize that I did something important just by making a meal. Those are the happy moments now: sitting at a table, eating together, and being able to participate.

Sometimes our evenings are staggered. My daughter comes home from school, and we are immediately in night‑routine mode with the younger ones. We do not all sit and eat together. On the days we do manage to eat at the same time, we notice it. We say, “We are all here together,” and that becomes the memory we hold onto.

Finding stomach cancer community and online support

At first, having this diagnosis is very isolating. You do not know where to go. My best friend was my first lifeline because she had gone through breast cancer. We talked almost every day. Outside of her, I started finding online support in stomach cancer‑specific groups and foundations. I joined groups where people have gastric cancer like me, including younger parents.

We have lost many people from those groups, and it hurts because they become like family. It is powerful, though, to connect with people who share similar circumstances; not just the same cancer, but also being young parents, dealing with caregiving, finances, fear, and all of it. Sometimes we talk about cancer; other times we talk about normal things just to feel human.

November is a heavy month in the stomach cancer world because it is Stomach Cancer Awareness Month, and also when we tend to remember and lose many friends. There was a woman named Rita whose situation really resonated with me. My kids are half Cantonese, and her kids were half Cantonese too. She left behind very young children. Those similarities hit you hard.

We also have regular support calls every couple of weeks. Recently, we found out that one of our sisters is going into hospice because there is no more treatment left. Knowing I am headed to that reality, too, at some point, makes it all feel very close. We cry together, pray for each other, and try to lift each other up while still respecting that no two people experience this the same way.

Time, identity, and redefining what matters

One big lesson from all of this is about time. Time is your biggest asset. I am very careful with where I give mine now. Texting someone back takes time. Taking a call takes time. If I am giving you my time, it means you matter to me. I tell my friends and support sisters that, and they understand, because they are living it too.

I also realized how easy it is to let cancer become your entire identity. In the beginning, I think I fell into that. You are searching for information and community, and everything in your life becomes about cancer. Recently, I have been trying to pull away from that mindset and remind myself that I was more than cancer before this, and I still am. I am funny, I am creative, I am a mom, a wife, a daughter, a friend. I am not just a patient.

When I am in the hospital three times a week, I allow myself to be “the patient” in that space. But when I go home, I sometimes tell my sister or my friends, “I do not want to talk about cancer today,” and that is okay. I step back from social media if it gets too triggering. I try to read, do something small that feels normal, or just rest.

Ultimately, it is about redefining who I am and what I want the rest of my life to look like, however long that is. That is true for anyone, with or without cancer. If you are not happy with your life, you can ask yourself why and start taking small steps. Things do not change overnight, but small wins matter. I celebrate the small wins.

My final message: forgiveness, kindness, and changing the world

If there is one thing that sums up what cancer has taught me, it is that you have one life to live and time is precious. Spend it on what and who truly matters. Try to be forgiving of yourself. When I look back at my life, I do not see mistakes as just mistakes; I see them as learning. I learned, I grew, I changed. Holding onto self‑blame does not help.

The most beautiful thing you can do is be kind and spread love. That starts with being kind to yourself. Many people are not kind to themselves, and that makes it hard to be kind to others. You do not have to change the whole world with some huge gesture or have millions of dollars. If you work on yourself and try to be a good person, that is how you change the world: one small act at a time.

Arelly R. stomach cancer
Thank you for sharing your story, Arelly!

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More Stomach Cancer Stories

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Maria C., Stomach Cancer, Stage 4 (Metastatic)



Symptoms: Rapid weight loss, fatigue, inability to hold food down

Treatments: Chemotherapy, surgery (robotic distal gastrectomy), radiation therapy
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Jeff S. feature profile

Jeff S., Stomach Cancer, Stage 4 (Metastatic)



Symptoms: None; found during the evaluation process for kidney donation
Treatments: Surgery (partial gastrectomy & nephrectomy), chemotherapy (oxaliplatin & capecitabine), radiation
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Lauren C., Stomach Cancer, Stage 1, CDH1+



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Amy M. stomach cancer

Amy M., Stomach Cancer (Gastric Adenocarcinoma), Stage 3B



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Treatments: Chemotherapy, radiation therapy, surgeries (gastrectomy, partial pancreatectomy), immunotherapy
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Graham L. stomach cancer

Graham L., Stomach Cancer (Diffuse Gastric Adenocarcinoma with Signet Ring Cell Features, Poorly Differentiated), Stage T1bN0



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Mary Jane B. stage 4 stomach cancer

Mary Jane B., Stomach Cancer, Stage 4 (Metastatic)



Symptoms: Fatigue, night sweats, sharp back pain, bloody stool, unexplained weight gain, nausea and vomiting, chest pain, shortness of breath, severe anemia, loss of appetite and early satiety, sudden and intermittent dry cough, persistent stomachache, distended abdomen, frequent headache, forgetfulness
Treatments: Chemotherapy, targeted therapy (anti-HER2 receptor monoclonal antibody), immunotherapy (PD-1 inhibitor)
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Categories
Appendectomy Cancers CDH1 Chemotherapy Cholecystectomy Clinical Trials Gastrectomy Gastric Adenocarcinoma Hereditary Diffuse Gastric Cancer (HDGC) HIPEC (Hyperthermic Intraperitoneal Chemotherapy) Lymphadenectomy Metastatic Metastatic Omentectomy Oophorectomy Patient Stories Peritonectomy Splenectomy Stomach Cancer Surgery Treatments

New Motherhood and Stomach Cancer: Dawn’s Story

Dawn C. stomach cancer

New Motherhood and Stomach Cancer: Dawn’s Story

Dawn’s experience with Stage 4 CDH1+ Hereditary Diffuse Gastric Cancer

Dawn is a mom from northwest Indiana who thought her family was complete. She and her husband already had a ten-year-old and a nine-year-old when they learned they were expecting a surprise baby boy in her early forties. At 41, she approached this pregnancy much like her first two, expecting another normal experience and focusing on caring for her growing baby while juggling life with two older kids, unaware that stomach cancer was already developing.

Interviewed by: Keshia Rice
Edited by: Chris Sanchez

Dawn’s health began rapidly declining during her third trimester. Despite thankfully having a healthy baby, she endured symptoms like intense fullness, daily vomiting, dehydration, and ultimately, blood in her vomit, a warning sign that demanded urgent attention. Dawn’s persistence led to big changes in her medical care: hospitalizations, an emergency C-section, and a cascade of tests, including biomarker testing, that finally uncovered her stage 4 CDH1-positive stomach cancer (Hereditary Diffuse Gastric Cancer or HDGC).

Dawn C. stomach cancer

The genetic testing that revealed the CDH1 hereditary mutation, impacted not just her future but her children and extended family. As she navigated complex treatments, from chemotherapy and immunotherapy to HIPEC procedures and a swath of surgeries that included a gastrectomy, she became an empowered self-advocate. She challenged healthcare roadblocks, appealed insurance denials, and leaned on online patient communities for support and knowledge.

Through physical recovery, emotional uncertainty, and relentless self-advocacy, Dawn experienced profound transformation. She credits her faith and her family for sustaining her through exhausting treatment cycles and recovery, celebrating the small victories and moments of connection. She emphasizes that patient experience is not a solo effort: self-advocacy, family partnership, and compassionate care networks are essential for navigating stomach cancer.

Watch Dawn’s video above and scroll down for the edited transcript of her interview. You’ll learn how:

  • Symptoms in pregnancy, like fullness and vomiting, deserve careful monitoring and should not be automatically attributed to standard pregnancy issues
  • Self-advocacy is a life-saving skill; researching, appealing insurance denials, and seeking multiple medical opinions directly impacted Dawn’s experience
  • Family, faith, and community are crucial sources of resilience during prolonged medical treatment
  • Every patient’s experience is unique; personalized treatment decisions and persistence shape outcomes, not assumptions
  • Dawn transformed from a struggling patient to an empowered advocate for herself and her family
  • Name: Dawn C.
  • Age at Diagnosis:
    • 41
  • Diagnosis:
    • Stomach Cancer (Gastric Adenocarcinoma, Hereditary Diffuse Gastric Cancer)
  • Staging:
    • Stage 4
  • Mutation:
    • CDH1
  • Symptoms:
    • Persistent bloating
    • Feeling of discomfort in the stomach area
    • Weight loss
    • Dehydration
    • Feeling very full, leading to vomiting
    • High blood pressure
  • Treatments:
    • Chemotherapy: HIPEC, including through a clinical trial
    • Surgeries: Gastrectomy, splenectomy, cholecystectomy, oophorectomy, appendectomy, omentectomy, peritonectomy, lymphadenectomy
    • Immunotherapy
Dawn C. stomach cancer
Dawn C. stomach cancer
Dawn C. stomach cancer
Dawn C. stomach cancer
Dawn C. stomach cancer
Dawn C. stomach cancer

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

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

Transcript of Dawn’s Interview
  1. Hi. My name is Dawn
  2. My initial symptoms
  3. I had an emergency c-section and got admitted
  4. When I first heard the words “gastric adenocarcinoma”
  5. Parenting through cancer: feelings of loss
  6. Hereditary Diffuse Gastric Cancer: Learning about genetics
  7. My treatment: chemotherapy, HIPEC, and surgery
  8. The importance of self-advocacy in cancer care
  9. I had to find a new normal after surgery
  10. My family has really supported me
  11. Messages for my kids, and for myself
  12. My advice for other patients

Hi. My name is Dawn

I am from Northwest Indiana. I was diagnosed with gastric adenocarcinoma, also known as gastric cancer, in September 2024. At that time, I was 41 years old. 

My husband and I were blessed with a surprise baby boy. We also have a ten-year-old and a nine-year-old, so we thought we were done. But God had other plans. I was pregnant and due in October 2024. All my pregnancies had been normal, and I felt okay for most of this one, even though I was older at 41. Everything was fine until about the third trimester. Around August, or maybe June or July, I started to feel unwell.

My initial symptoms

I tried to keep pushing through, make sure I drank enough water and ate well, but the baby seemed fine, and I just couldn’t come around; I just was not feeling well. 

I’d eat and drink throughout the day, but at the end of the day, I couldn’t take any more. I’d be so full that I’d get sick. I told my OB doctor overseeing my pregnancy, and since the baby seemed fine and there were no other alarms, we chalked it up to morning sickness. But it progressively, slowly got worse. 

I got dehydrated and went to a local IV drip bar for hydration a few times. I ended up in the ER twice for dehydration. The doctor said, “You’ve been complaining about this for a while. We can’t do much, but if you go to the ER, maybe they’ll give you a scan.” 

They didn’t want to scan me in the ER because I was pregnant, so they did an ultrasound of my gallbladder, and that was fine. No bowel obstruction or other issues.

We still just didn’t know what was going on. All I knew was that I just wasn’t feeling well, and I had never had morning sickness with my other pregnancies. I didn’t feel comfortable taking the Zofran because I was pregnant and wasn’t really nauseous, just full every day. This continued with the baby still growing fine, but I started losing weight, even though I was in my third trimester and should be at my biggest. 

I tried to eat as much as I could to help the baby grow, but I was still throwing up. At one point, I threw up blood. There wasn’t much we could do since the baby seemed fine and was measuring okay. 

Eventually, I went in for a checkup, and my blood pressure was high. That raised alarms, and I told the nurse I’d been getting sick nearly every day for the last two months of the pregnancy.

I had an emergency c-section and got admitted

The nurse told me, “I don’t think you’re going to be leaving here today.” They drew blood work, and I was critically low on electrolytes, especially potassium. The high-risk doctor said, “We’re going to have a baby today.” 

We had a C‑section, and everything was good, though I was nervous because I hadn’t been feeling well. But the baby was healthy. We just missed the NICU by a few pounds; he was born at 5 pounds and a month early, but all was well.

Later that night in the hospital, I ordered a meal, ate a few bites, and felt full; again, something wasn’t right. I got sick, and there was blood, so that prompted more action. 

Now that I was in the hospital, we wanted to find out what was going on. The GI doctor ordered a CT scan; next, they wanted to do an endoscopy.

When I first heard the words “gastric adenocarcinoma”

The next day, I had the endoscopy. I had never had one before. You’re sedated for it, and I went down, it was done, and next thing I knew, I was in recovery. 

The GI doctor came in and told me they found something. This was the first time I’d ever heard the words “gastric adenocarcinoma.” 

To me, it seemed like a foreign language. I didn’t know what it meant. He said “stomach cancer,” and when you hear those words, that just wasn’t on my radar whatsoever. 

To my knowledge, I didn’t have any history or family history of stomach cancer. I was just trying to process it. He was quite certain about what he saw, but they did a biopsy anyway. 

I got the phone call a few days later. It was confirmed, I had stomach cancer.

Looking back, yes, I had symptoms. It wasn’t true that it came out of nowhere. I didn’t have debilitating signs, but I had bloating for years, discomfort, and sensitivity in my stomach area, though I couldn’t pinpoint what it was. I didn’t have acid reflux or GERD or nausea, or vomiting until the pregnancy. I’d seen a few doctors, even a GI, searching for answers about my stomach. I had been told different things: constipated, try a different diet, or do autoimmune or genetic testing. I did a lot of chasing from 2020 to 2023, looking for why I didn’t feel well. I chalked it up to prior pregnancies and C-sections, or just lifestyle. 

There were signs, but nothing super alarming, and pregnancy definitely masked it.

Parenting through cancer: feelings of loss

So my son was born on September 26th, and I was officially diagnosed on September 30th. 

This entire past year has been a blur, a lot of lows. My mind hasn’t always been present and focused on my son, when so much of it has been about treatment, diagnosis, and surgeries. 

Thank God for my family, who helped care for him, especially since we traveled a lot for doctors, treatments, and surgeries, and the days when I just needed sleep. 

I feel robbed, almost like a shell of myself. I feel like I’ve missed the first year of his life because I’ve been here, but I haven’t really been here.

With the cancer diagnosis, there’s so much that comes with it. It’s humbling and puts things into perspective. You think about what matters and what’s frivolous. 

All of our relationships, especially with my husband, have strengthened. There are moments of weakness, and sometimes I feel it’s unfair for him to deal with this right now. But he’s been a rock and allowed me to heal, research, and be comfortable with my care team. 

We’ve grown in faith, hope, and love, with our beautiful children. We are determined not to take a second for granted.

Hereditary Diffuse Gastric Cancer: Learning about genetics

I had never heard of CDH1 or hereditary diffuse gastric cancer before my diagnosis. 

When the genetic counselor called to say I was CDH1 positive, I had no idea what that meant. That’s when the research began: what does this mean for my family, children, sisters, and mom? Everything changed. 

There are different types of stomach cancer, and statistics, survival rates, and understanding the disease have become important. The lack of research and funding is scary, but I’ve learned so much from online communities advocating and sharing stories. That’s helped me gain strength and keep fighting.

Once I found I was CDH1-positive and that it was inherited, it was another blow. Now not only I but my family was affected too; my children, who’ll explore options for surveillance or surgery when they’re older, and my mom and sisters. 

My dad passed away from colon cancer in 2014, and we hoped the gene was from him, but my half-sister on my dad’s side (who recently passed from cancer) did not have the gene. My mom got tested and, unfortunately, is a carrier, prompting more family members to get tested. It set off a domino effect. Now, cancer is affecting everyone close to us.

My treatment: chemotherapy, HIPEC, and surgery

Meeting with the oncologist, I had no idea what to expect, even though my dad had gone through cancer. I started treatment and also saw a surgeon who wanted to remove part of my stomach due to the blockage and inability to eat. 

I was down to 98 pounds, very ill, and had little energy. I tried to eat and drink, but I kept getting sick. The lesson: with cancer, you want things done right now, but you have to have patience; it’s a wait-and-see process.

I had to wait for treatments, scans, and not rush into surgery, especially when I learned about the CDH1 gene. I started chemotherapy at our local university hospital. I had side effects like neuropathy, cold sensitivity, and nausea. 

In November, I also had a laparoscopic washing to check for spread, learning that with hereditary diffuse gastric cancer, tumors aren’t easily visible on scans. A lot of how the treatment goes depends on how I feel.

I responded well to chemo, added immunotherapy, and by December, I was eating again. Even if scans didn’t show clear shrinkage, I felt the difference.

The hospital had a clinical trial for HIPEC (hyperthermic intraperitoneal chemotherapy)—important because traditional chemo doesn’t always reach peritoneal spread. My insurance denied the trial as experimental, but my surgeon fought for it; I appealed and sought other clinical trials elsewhere. While off chemo waiting for HIPEC, symptoms worsened, and I had to get back on chemo. Insurance eventually reversed the denial, and I was able to receive HIPEC and, later, gastrectomy.

In June, I had my first HIPEC; the procedure was tough but successful. In July, I had a second HIPEC combined with gastrectomy. The 12-hour surgery removed my stomach, spleen, gallbladder, ovaries, appendix, omentum, part of the peritoneum, and 45 lymph nodes. Three of the lymph nodes were cancerous. Since then, I’ve been recovering, resumed chemotherapy on a reduced dose, and continue immunotherapy.

A feeding tube was placed but removed after a week; I’ve been able to maintain my weight since and eat mostly normally again.

The importance of self-advocacy in cancer care

Some doctors say, especially for stage 4 patients, “It’s only palliative care, and surgery isn’t an option.” Others follow strict guidelines without options. I knew that kind of doctor wasn’t right for me. 

My persistence and advocacy were crucial. If I hadn’t advocated for myself, done research, or looked at every option, things could be different. I may not be here had my stomach been partly removed earlier. I had to fight for TPN nutrition when I dropped to 98 pounds, and it saved my life. 

It’s vital to know your options; if you don’t know, you might miss a lifesaving opportunity. Take charge. Every case is different, and you have to do the work.

I had to find a new normal after surgery

Post-surgery, life is still settling. There’s a lot of anxiety with upcoming scans and uncertainty. It’s not back to normal; it’s a new normal. I try to live each day as best I can, taking the good with the bad, one step at a time, not thinking too far ahead. 

I’m feeling well now between treatments and hope to go to Washington to advocate for stomach cancer; to be a body in the room, a voice, or a shoulder to cry on. 

I thank God for leading me and for my children. I’m taking it one day at a time, cherishing moments with my boys, getting outside, and eating well. I want to share the love I’ve received and help others; not focus on disease, but health. For work, I’ll probably go back soon, but not very soon.

My family has really supported me

No questions asked. If I need anything: my mom to watch the baby, my husband to help, my mother-in-law or sister-in-law, they’re here. 

We wouldn’t be where we are without family and friends, even our church family. 

The kids keep me moving; I can’t wallow too long because I need to get up for them. For as tired as I am, they need me. I’m determined to be here for them, and I’ve needed them more than they know. They’ve been my rock.

Messages for my kids, and for myself

I wish my boys had never had to watch me go through this. I want them to know how proud I am, how they’ve been the light of my life. They give me the strength to keep fighting, to get up each day with energy, hope, and love. Their light gives me mine. 

I thank them for being strong, but also want them to know they don’t always have to be; their feelings are okay. We must enjoy today’s moments. Nobody knows what tomorrow brings.

To myself last year, I’d say: It’s all going to be okay. God’s got me and will show me the way. I have angels, my dad, sister, nephew, and grandparents, watching over us. 

Cancer’s an awful, awful disease. It robs us of joy and love, and it’s not fair. But there’s hope, and everything will be okay.

My advice for other patients

To other patients going through treatment or facing a diagnosis: God bless you, I pray for your strength, and want you to know there’s hope. Do for yourself what you would for someone else. Fight! 

Don’t give up. Do research, talk to your doctor, and listen to yourself. Ask for help. There are amazing communities that will advocate, help, and show up for you. Lean in; you don’t have to fight alone. 

Take each day as it comes. No one is promised tomorrow, and every day is beautiful.

Dawn C. stomach cancer
Thank you for sharing your story, Dawn!

Inspired by Dawn's story?

Share your story, too!

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Maria C. stage 4 stomach cancer

Maria C., Stomach Cancer, Stage 4 (Metastatic)



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Symptoms: Irregular bowel movement (stomach bile), extreme pain eating certain foods or drinking alcohol

Treatment: Total gastrectomy (surgery to remove whole stomach)
...
Amy M. stomach cancer

Amy M., Stomach Cancer (Gastric Adenocarcinoma), Stage 3B



Symptoms: Unexplained weight loss, fatigue, blood in stool, stomachache, trouble swallowing

Treatments: Chemotherapy, radiation therapy, surgeries (gastrectomy, partial pancreatectomy), immunotherapy
...
Graham L. stomach cancer

Graham L., Stomach Cancer (Diffuse Gastric Adenocarcinoma with Signet Ring Cell Features, Poorly Differentiated), Stage T1bN0



Symptoms: None; a stomach polyp discovered during his annual screening tested positive for cancer

Treatments: Surgeries (total gastrectomy, lymphadenectomy)
...
Mary Jane B. stage 4 stomach cancer

Mary Jane B., Stomach Cancer, Stage 4 (Metastatic)



Symptoms: Fatigue, night sweats, sharp back pain, bloody stool, unexplained weight gain, nausea and vomiting, chest pain, shortness of breath, severe anemia, loss of appetite and early satiety, sudden and intermittent dry cough, persistent stomachache, distended abdomen, frequent headache, forgetfulness
Treatments: Chemotherapy, targeted therapy (anti-HER2 receptor monoclonal antibody), immunotherapy (PD-1 inhibitor)
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Categories
Bile Duct Cancer Chemotherapy Immunotherapy Patient Stories Radiation Therapy Treatments Y-90 radioembolization

Alicia on Motherhood, Advocacy, and Spreading Joy Through Flowers After Her Bile Duct Cancer Diagnosis

Alicia P. bile duct cancer

Alicia on Motherhood, Advocacy, and Spreading Joy Through Flowers After Her Bile Duct Cancer Diagnosis

In the months after her daughter was born, Alicia tried to push through symptoms that felt inconvenient but familiar, including nausea, fatigue, headaches, and a growing pain in her upper abdomen. Like many new parents, she put herself second. It wasn’t until just before her daughter’s first birthday that Alicia learned she was living with stage 4 cholangiocarcinoma, also known as bile duct cancer, a diagnosis that reshaped how she approached time, family, and purpose.

Interviewed by: Keshia Rice
Edited by: Chris Sanchez

Alicia emphasizes how quickly her diagnosis moved from initial emergency room visit to confirmed bile duct cancer, largely thanks to attentive physicians who did not dismiss her symptoms. She describes the emotional weight of being a young parent with a life-threatening disease, noting the compounding anxiety of wanting to protect her child from negative impacts while managing her own health. Amid appointments, chemotherapy infusions, and the adjustment to new routines, Alicia found unexpected gratitude in each day.

Alicia P. bile duct cancer

Taking an active role in her treatment, Alicia sought multiple second opinions, advocated for Y-90 radioembolization (highly targeted radiation treatment), and joined a tightly knit group of young mothers with cholangiocarcinoma. Her openness to clinical trials and collaboration with leading specialists highlights her practical approach and willingness to explore advances in care. Alicia’s experience extends beyond medical treatment into self-discovery. She speaks candidly about the evolving sense of identity that accompanies visible side effects like hair loss.

Purpose remains central throughout Alicia’s story. She channels energy into her Growing Kindness flower project, giving bouquets to oncology centers, neighbors, and strangers, and shares seed packets during winter. The joy and community she creates are gifts she hopes her daughter will carry forward, living with intention, spreading kindness, and noticing how a single act can create positive ripples. Alicia aims to help empower patients, families, and care partners to seek connection, advocate for themselves, and embrace each day’s value alongside their challenges.

Watch Alicia’s video, and read her edited interview transcript below. You’ll learn more about how:

  • Self-advocacy is essential. Alicia pursued multiple opinions, researched treatment options, and credits her persistence for receiving life-prolonging therapies
  • The disease, not the patient, determines treatment response; Alicia highlights the importance of compassionate care and patient effort
  • Meaning and purpose are possible even after drastic life changes. Her involvement in the Growing Kindness project illustrates transformation and hope
  • Community matters: Alicia found critical support in a Facebook group for young mothers with cholangiocarcinoma
  • Living with intent and kindness impacts others, especially children observing their parents’ experiences
  • Name: Alicia P.
  • Diagnosis:
    • Bile Duct Cancer (Cholangiocarcinoma)
  • Age at Diagnosis:
    • 33
  • Staging:
    • Stage 4 (Metastatic)
  • Mutations:
    • ARID1A, CDKN2A, CDKN2B
  • Symptoms:
    • Nausea
    • Persistent diarrhea
    • Extreme upper abdominal pain (right side)
  • Treatments:
    • Chemotherapy
    • Immunotherapy
    • Radiation therapy: Y-90 radioembolization
Alicia P. bile duct cancer
Alicia P. bile duct cancer
Alicia P. bile duct cancer
Alicia P. bile duct cancer
Alicia P. bile duct cancer
Alicia P. bile duct cancer
Alicia P. bile duct cancer
Alicia P. bile duct cancer

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

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

Transcript of Alicia’s Interview
  1. Hi. My name is Alicia
  2. How I discovered that I have cancer
  3. Parenting with cancer: the emotions and challenges I faced as a new mom
  4. How I managed my fears and planned for the future
  5. From my ER visit to my diagnosis
  6. Learning about an uncommon cancer
  7. My day-to-day life with cancer and how I maintain normalcy
  8. Growing Kindness: how we spread joy through flowers
  9. How my life has changed after my diagnosis
  10. My body image and identity
  11. The physical and emotional impact of chemotherapy
  12. How I’ve advocated for myself
  13. Clinical trials and research: considering new treatments
  14. Understanding palliative care
  15. How I keep going
  16. What I want others to know

Hi. My name is Alicia

I reside in New England. I am 36 years old. 

I was diagnosed with stage 4 bile duct cancer or cholangiocarcinoma in October of 2022, about two weeks shy of my daughter’s first birthday. I have innumerable lung lesions, and I have a grapefruit-sized tumor on my liver.

How I discovered that I have cancer

I had experienced postpartum body changes, which are absolutely normal. However, I noticed an increase in feeling nauseous, headaches, lack of appetite, even though I was nauseous, and I was trying to manage that fatigue and upper abdominal pain in the right upper quadrant. I believed these changes were due to hormonal shifts from being in a postpartum realm or increased stress from my career. I had recently taken a new job, and all those things together led me to believe it was just stress. My right upper quadrant pain increased over a couple of months before diagnosis. One day, my husband finally said, “I think it’s time for you to go to the ER and get checked out. This just doesn’t seem right.” But as most people do, especially parents, we tend to put ourselves last, and I kept pushing off my symptoms, chalking them up to stress and hormones.

One Monday morning, I worked from home until about noon, drove myself to the ER, went in, and was immediately guided into scans by physicians who believed me and didn’t dismiss my symptoms. I am really grateful for that. That’s a story we hear a lot: young, healthy individuals go to the hospital, and their symptoms are just shoved off to the side. They immediately sent me in for scans after palpating my abdominal region, and you could actually see almost a raised area over the liver. Scans led to additional scans in different types of machinery, and I could tell by how quickly things were moving and that I was being shuffled around that there was something gravely wrong. When the physician came into the room, I could tell he was really trying to keep it together.

Before he shared the information with me, he asked, “Do you want to call somebody, have them on the phone? Do you want to wait for someone to be here?” I just said, “Lay it on me. What’s going on?” Unfortunately, they had to tell me they could see three masses on my liver: one the size of a grapefruit, two smaller ones the size of golf balls, and many, many small nodules in my lungs. I drove myself home, calling my husband and my mother frantically to meet me at my house and pick up my daughter from daycare. 

I’ll never forget sitting in the backyard at about 5:00, as my husband held me and we just broke down on the ground and cried. 

The next few days and weeks were a whirlwind of tests, appointments, and phone calls to insurance, employers, daycare, all of the above.

Very quickly, I was given the news that I had stage 4 cholangiocarcinoma, an extremely rare and extremely aggressive cancer of the bile duct. It is considered a liver cancer, even though it comes from the bile ducts. Mine is intrahepatic, meaning it came from inside the bile duct attached to my liver and metastasized to my lungs as well. It is considered stage 4 when it has shifted to other organs, and I am considered in palliative care. They consider that I will never be cured. 

I started chemotherapy within a few weeks and have been receiving chemo infusions for three years as of early October this year.

Parenting with cancer: the emotions and challenges I faced as a new mom

As a parent, I think how you handle things, especially stress, changes with experience over time. It is a learned skill, not something taught, and it takes a very long time. I don’t think you’re ever done being a parent, and I don’t think you’re ever done learning as a parent. 

Learning about my diagnosis as a very new mom and new parent was detrimental. The stress, anxiety, and worry were exponential. It’s very hard to put into words. You’re not only worried about yourself anymore; you’re worried about this little human and your family, and the impacts on everyone.

With the aggressive nature of my cancer, everyone immediately goes to “Doctor Google” when diagnosed and starts reading as much as possible. It was very grim out there. Cholangiocarcinoma has historically been considered an older person’s cancer; it is usually diagnosed in people aged 50 or 60. There is a big increase in young patients, which is very scary, and hopefully, with more exposure, it will help increase funding.

Having people shed light on bile duct cancer will help increase funding and start to help younger people diagnosed with it. As a young parent, you’re so terrified of everything out there for your child; the last thing you want to do is add any negative impacts to their life.

How I managed my fears and planned for the future

Given the rarity and aggressive nature of my cancer, I did not think I would still be here today. My mental state when I was diagnosed was very bad as a parent. I immediately thought, “I’m not going to be here in a couple of years. I need to get everything settled, like wills, accounts, estates, and trusts, just to make sure that she’s all set.” Three years down the line, I’m able to tell you that tomorrow is promised to no one, and I am still here and so grateful for that. Every day is a blessing.

I live in a much different capacity, living for today. In the moment, I still have worries, and I still do a lot of planning as a bit of a Type A person. But we find joy in every day and take issues as they come, navigating them together as a family. 

I am a much better parent having been diagnosed with cancer: more patient, more kind, and more giving. I honestly think the positive aspects of the way it will change my daughter’s life will outweigh the negative ones someday. Having someone in your life who has cancer, illness, or hardship makes you a kinder individual, and I hope that’s the type of person she becomes.

From my ER visit to my diagnosis

My diagnosis came very quickly. Doctors were amazing in moving swiftly. I live in a very rural area, but close to Boston, Massachusetts, a hub of medical activity. I believe being young alarmed the doctors. Why does this seemingly healthy 32-year-old, who just had a healthy singleton birth, immediately have cancer? Everyone feels for you and wants to move quickly. With the aggressive nature of cancer, they wanted me to start chemotherapy as soon as possible.

From my ER visit to diagnosis, it was about ten days. We saw scans and large masses, so we knew there was cancer, just not exactly which kind or what chemotherapy to use. At first, I thought it was liver cancer, and then it was revealed to be cholangiocarcinoma. All of my blood, liver, and kidney functions were completely within the normal range. If I had only received blood tests in the ER, there would have been no way to tell I actually had cancer, and my symptoms would have been brushed off. The scans, ultrasound and then CT were crucial. 

My first symptoms started around June 2022, and I didn’t go to the ER until September.

Learning about an uncommon cancer

As is common for many cancer patients, I went straight to the internet after diagnosis; I’m a Type A person. I did as much research as I could and was up day and night reading about every aspect of the cancer, every possible treatment. I keep a running notes list in my phone of every potential treatment, chemotherapy, or alternative, that I see. There may be a treatment for kidney or pancreatic cancer not yet approved or known for bile duct cancer, but it could benefit me, so I keep those ideas in mind.

I was also reading the negative side, online and on social media, especially Facebook and Instagram, groups of people with bile duct cancer; there’s a lot of doom and gloom. Unfortunately, those diagnosed who are older may not be as healthy and may have other bad habits; they may already be in poor health when diagnosed.

From the outside, I was a perfectly healthy individual, working out, taking vitamins, no other medications, never broken a bone, never had a stitch. Online, all you read is cases where people are gone within weeks, months, or less than a year. The grave statistic: the five-year survival rate for stage four is 2%, which is very low. Most patients have other health issues and are older, but that’s not clear when you’re Googling at two in the morning after a diagnosis. Where I am today is a much different position. I see myself hopefully beating that statistic.

There’s so much fear among Facebook groups, and sometimes misinformation gets shared, but I salute the cholangiocarcinoma group on Facebook. There’s a patients-only group that promotes factual information and less emotional sharing. You’re not reading posts from someone’s distant relative grieving, but sharing direct patient experiences only.

We even created a subgroup shortly after my diagnosis for young mothers with cholangiocarcinoma; mothers with children 18 and under. There are only about 40 of us. That camaraderie has been instrumental in getting me through tough days. Most cholangiocarcinoma patients are stage 3 or 4 at diagnosis, considered palliative or terminal. Being able to share not only the motherhood journey, but also the cancer journey alongside that, has been so helpful. We’re all there for each other.

My day-to-day life with cancer and how I maintain normalcy

For me, three years in, I have a flow for day-to-day life. I am, again, a unicorn. I am on the same line of care treatment as I was at the beginning. I’ve had only one small change, and that is unheard of in most people’s cancer journeys with cholangiocarcinoma. Most cancers, especially this one, mutate quickly, and people run out of options. Everybody I knew in my support groups who was alive before is no longer with us. I am extremely blessed.

Day-to-day normalcy is possible for now. At home, we know my nadir, the periods when chemo side effects are worst, and plan accordingly. I still receive chemo infusions every two weeks, and the same kind. Three years in, I have my routine down for chemo week and the week after. In between, I am again extremely lucky. This is not normal for any cancer, especially cholangiocarcinoma; most treatments fail quickly for others.

I am on an aggressive chemotherapy regimen and have had a dose reduction, now going every other week instead of a 21-day cycle. However, I have physically managed side effects and stayed clinically stable. We utilize daycare for days when I am not well enough to care for my daughter, prepare food in advance, and make sure prescriptions and necessities are ready. Three years into this, I know my body well. Life looks very different. I was very career-oriented and had to retire a year into my diagnosis. Now I spend my days managing symptoms, trying to get things done at home, and being a mom.

I am so lucky for that. I never thought I’d have as much time with my daughter. Cancer affects me in many ways, and I am not lucky to have it, but it has also blessed me, giving me so much time with my daughter, far more than I ever could have had working full-time.

Another part of my life now is continuing my passion for flowers and gardening. My family did this out of necessity for generations, and I grew up gardening. I am part of a project foundation, a nonprofit called Growing with Kindness, growing and giving away flowers. I started doing this before cancer, the pandemic, and motherhood. It has given me the most purpose in my life.

Growing Kindness: how we spread joy through flowers

Gardening and the Growing with Kindness project have given me so much purpose in a time when I felt lost. Being career-oriented was my life’s purpose, aside from being a mom, and I had to find my way back to myself when I stopped working. I did this by growing as much as possible, which helps keep me fit mentally and physically, and it’s a whole family project.

There are times when I can’t get into the garden or cut or weed. My family steps in and helps when I am not well enough. The primary purpose is that I primarily give flowers away, including at my oncology infusion center. They welcomed me with open arms and let me put up a little station by the front desk. Each year, I put up a sign: “Growing Kindness flowers from patient Alicia.” I put out little bouquets, and patients or staff take them home. So, I can spread not just my passion, but joy, and this project has created ripples in my life and community.

We also give flowers at the grocery store, post office, and farmers’ market, and to our neighbors and friends. My four-year-old daughter will say, “I think we should give so-and-so flowers; they’re really sad.” That makes me so proud. If you don’t see joy, spread joy; be the joy. I truly believe these are ways to make an impact in your community; it can be as simple as giving someone a flower.

In winter, we put together seed packets from seeds saved from our garden and hand them out. If someone doesn’t have a green thumb, I tell them to throw the seeds on the side of the road. These seeds are noninvasive, okay for the climate. 

Make the world a place you want to live in, and spread beauty. That’s what I do with my days now.

How my life has changed after my diagnosis

Being diagnosed with cancer has changed my life in many ways. I have more patience and more appreciation for slowing down. I am lucky to live in a small, kind community where people care about each other. Everyone’s business is known, and people are always generous. Out in the world, I have more patience. I try to make conversation at the grocery store, hold the door, make time for small connections, making ripples and an impact.

If we don’t make the world a better place ourselves, no one will. If we all look at our phones and never connect, we become robotic, never making connections. 

To me, human connection and love are what the human experience is about. So I try to take time to jump into those experiences in real time and really spread joy when I can.

My body image and identity

I have always been extremely confident. Bile duct cancer has changed so much about my life: how I saw my future as a mother, wife, friend, daughter, and community member. It changed my appearance; I lost all my hair. It actually still falls out with every chemo infusion, so I am not completely bald, but I do lose hair. A little bit has grown back, but I don’t really have any eyebrows.

Especially in a society where looks are important, I lean into myself and my confidence. Beauty is in the eye of the beholder, and when you exude confidence and self-love, people gravitate to you and feel your energy. I truly believe in authenticity, being yourself, wearing your heart on your sleeve, and letting your soul shine. People love you for you and not just your appearance.

It is hard to walk around without hair or eyebrows, as a woman, wearing turbans and hats. People can tell you have cancer, and for me, the hardest part was not wanting to be seen as weak and sick. Recently, someone said to my mom at an event, “Is that your daughter? You would never guess she has cancer.” That’s the world I want to live in; cancer is a part of me, but not my whole identity. I am proud to be a cancer fighter, and I am still strong, just in many different ways.

The physical and emotional impact of chemotherapy

As of October this year, at my third anniversary, I have had over 80 chemotherapy infusions of three very strong chemotherapy drugs. I go every two weeks, and we have adjusted treatment, removed immunotherapy, and lowered dosage to help manage side effects. They are still very strong chemo agents.

On chemotherapy day, I am at my infusion from 8:00 AM to about 2:30–3:00 PM. My mom drops me off on her way to work, and my husband picks me up. We pick up my daughter from daycare, go home, and I go straight to bed. Symptoms start during the day, and I have a predictable flow: days one, two, and three are symptomatic.

We have strategies to manage this: anti-nausea medications, drinking tea, staying hydrated to flush out the drugs, and using every available tool. If I feel off, I’m knowledgeable enough now to know when to go to the hospital. I am confident in my body, treatment, and plan, which is a good place to be. The unknown is scary; not knowing what to expect, each chemo would be awful.

We know what symptoms are coming, and prepare for them. My nadir, periods of low immunity, usually come on days seven and eight. Steroids give a false sense of wellness, but after my nadir hits, there’s a low. I prepare by making sure the house is in order, laundry is done, meal plans are made, and arranging for my daughter’s daycare rides. I rely on my family. Sometimes, I’m not well enough for chemotherapy, and that’s a sign my body needs a break — I take a two-week break rather than just skipping a week. These breaks allow me to feel the best I’ve felt in months.

My symptoms include nausea, extreme lethargy, bone aches, and severe neuropathy in my hands, feet, arms, and legs. I have many tools for managing these. I still experience upper right quadrant pain by my liver, which is chalked up to internal neuropathy or permanent nerve damage from liver radiation. My greatest tool is my heating pad; I use it at all times, even in summer, when I sleep, and have portable ones for driving, thanks to my husband. It helps me manage these nerve pain symptoms.

How I’ve advocated for myself

Faced with a scary bile duct cancer diagnosis, I became a huge advocate for myself: asking tough questions, seeking information, and not settling for answers that didn’t sit well with me. I am a strong proponent of getting second, third, and fourth opinions; if insurance approves it, everyone should see a new specialist annually.

Everybody is different, so even if one treatment is standard, you need to question what’s happening. If you’re not involved in your care, you’re not doing yourself any justice. There are never too many opinions. I have met with four cholangiocarcinoma specialists in New England and New York, and all have agreed to keep me on standard care.

The more opinions I can gain, the better. At this point, I don’t question whether I’m on the right treatment or if I need more genetic testing. I have had many eyes on my case. I keep notes on potential treatments for the future.

Advocating for myself helped me receive Y-90 radioembolization, a strong dose of radiation beads delivered through the femoral artery, directly into the tumor. It helped kill the grapefruit-sized tumor on my liver, most of which is now necrotic, though some cells remain. By the grace of God, I have answered three years on one line of chemo, which is extremely rare.

Clinical trials and research: considering new treatments

With aggressive cancers, many patients progress quickly and have only clinical trials as an option. This is vitally important for the cancer community and for the future. There’s always hope that a clinical trial may be the “golden egg,” a cure, especially for palliative patients.

I have not removed clinical trials as an option. Every oncologist I’ve met asks, “Is now the time?” Every single one has said, “Given your stability, stay on your current treatment.” That makes it easier for me, and I’m lucky to be in this position; it’s not every patient’s outcome.

Each time I have a scan, my local oncology team consults with my team in Boston — Dr. Haley Ellis, a Harvard researcher and leading bile duct cancer expert. If it came to needing a clinical trial, I know she could send me anywhere for one. Keeping communication open as a patient keeps you at the forefront of your doctor’s mind. Being young and relatively healthy makes me a good candidate; if a drug arises that would help, I believe I’d be called.

Understanding palliative care

In cancer, you learn many definitions and acronyms: palliative care, terminal illness, hospice. Many people confuse these as interchangeable, but they have very different meanings. Palliative care typically means you are not curable; it’s hard to hear, but doctors must be honest.

Doctors told me, “You will not be cured, but we’ll manage your cancer.” I’m not in hospice or considered terminal today. I’m not actively dying. These are difficult terms, but palliative care only means it can’t be cured; it opens resources and therapies that help manage treatment. 

It’s medical coding, setting tone, but it does not mean you’re dying tomorrow.

How I keep going

One thing I often say, and many people do about challenges, “I don’t really have a choice.” Early in my diagnosis, a nurse told me, “You do have a choice. You can get up every day and fight to the best of your abilities or not.” There is a difference.

That realization really stayed with me. The fact that I show up every day through hard days is my way of moving forward. Everyone’s journey is different, and I recommend being gentle with yourself. 

Some days, I am the warrior. Other days, I am defeated, emotional, crying, feeling lost. It can change day to day, hour to hour, moment to moment. 

Allowing yourself grace and not always being at the top of your game is key to moving forward, physically and emotionally.

What I want others to know

If I could go back and say anything to myself before diagnosis, I would say to stop taking myself so seriously. Life is to be enjoyed. Your career is not everything. Just enjoy living in the moment and take things slowly.

What I want my daughter to take most from this experience as she grows is to live with intent and spread joy and kindness. The waves we make in our village and community by being kind are important. I don’t ever want her to forget that one small action can change the world. 

It’s not all doom and gloom with bile duct cancer or cancer as a whole; there are horrible days, but there are wonderful days. I hope she takes the feeling of joy from me and pushes it forward in the kindness she spreads throughout her life.

Alicia P. bile duct cancer
Thank you for sharing your story, Alicia!

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Dania M.

Dania M., Colon Cancer, Stage 4, with Liver and Peritoneal Carcinomatosis



Symptoms: Constipation, diarrhea, severe bloating, swollen belly as if pregnant
Treatments: Surgery, immunotherapy

Brittany B., Liver and Bile Duct Cancer, Stage 4



Symptoms: Amenorrhea, unexplained weight loss, loss of appetite, pain in right upper quadrant of abdomen

Treatments: Surgery, immunotherapy