Tag: HIPEC

New Motherhood and Stomach Cancer: Dawn’s Story

Post author By Chris Sanchez
Post date December 15, 2025
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December 15, 2025

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).

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

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

Hi. My name is Dawn
My initial symptoms
I had an emergency c-section and got admitted
When I first heard the words “gastric adenocarcinoma”
Parenting through cancer: feelings of loss
Hereditary Diffuse Gastric Cancer: Learning about genetics
My treatment: chemotherapy, HIPEC, and surgery
The importance of self-advocacy in cancer care
I had to find a new normal after surgery
My family has really supported me
Messages for my kids, and for myself
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.

Thank you for sharing your story, Dawn!

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Niccole is Redefining Life After Stage 4 Stomach Cancer

Post author By Chris Sanchez
Post date November 24, 2025
No Comments on Niccole is Redefining Life After Stage 4 Stomach Cancer

November 24, 2025

Niccole is Redefining Life After an Stage 4 Stomach Cancer

Niccole is a stage 4 stomach cancer survivor who embraced traveling the world after her diagnosed in 2021. After experiencing stomach pain, acid reflux and vomiting, she went to the doctor for testing that revealed her cancer. Ultimately, Niccole had 80% of her stomach removed, changing the way she lives each day.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Niccole’s tumor was blocking her stomach’s pyloric sphincter, and stomach cancer surgery meant that she might lose her stomach altogether. She initially underwent a chemotherapy regimen that worked by shrinking her tumor before surgery. Through biomarker testing, Niccole also learned that she carries the BRCA1 mutation, inherited from her mother’s side, linking her diagnosis to a known familial risk.

Niccole underwent surgery to remove her gallbladder and 80 percent of her stomach. Life afterward required a complete lifestyle change, requiring her to eat much smaller meals.

Two years later, Niccole’s cancer metastasized in her ovaries, liver, spleen, and peritoneum. She faced another uphill climb through HIPEC treatment and further surgery. Now on ongoing immunotherapy and ctDNA monitoring, she continues to live fully in the present, knowing that time is uncertain. Her story embodies acceptance, grit, and the power of patient advocacy. Through Debbie’s Dream Foundation and Hope for Stomach Cancer, Niccole mentors others navigating the unknown. She proves that life after a life-altering diagnosis can still be full of purpose.

Niccole’s story delves into:

Small, early symptoms can signal deeper issues. Listening to your body can save your life
Treatments may eradicate disease, but often transform how patients live afterward
Advocacy and patient communities provide essential emotional support and empowerment
True strength is not found in control but in embracing uncertainty with purpose
Niccole’s transformation unfolded not just through healing, but through redefining what it means to truly live

Name: Niccole B.
Age at Diagnosis:
- 37
Diagnosis:
- Stomach Cancer
Staging:
- Stage 4
Mutation:
- BRCA1
Symptoms:
- Stomach pain after having alcoholic drinks
- Eating less
- Slight weight loss
- Acid reflux
- Vomiting
- Getting full fast
Treatments:
- Chemotherapy: hyperthermic intraperitoneal chemotherapy (HIPEC), open HIPEC with cytoreductive surgery
- Surgeries: partial gastrectomy, cholecystectomy, splenectomy, partial colectomy, partial hepatectomy
- Radiation therapy: targeted radiation therapy
- Immunotherapy
- Targeted therapy: PARP inhibitor

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 Niccole’s Interview

My name is Niccole
I had a quiet travel year after a cancer recurrence and HIPEC treatment
My early symptoms, and the first signs that something was wrong
I had worsening symptoms, including acid reflux
My initial GI visit and missed testing opportunities
I had an alarming ultrasound and was urged to go to the ER
Rapid escalation: scope, CT, and oncology referral
The phone call, my panic attack, and hearing “oncologist”
Involving my family and getting a second opinion
Understanding the tumor location and the possible removal of my stomach
Facing life without a stomach, and my initial treatment plan
Tumor disappearance, major surgery, and creating a new stomach pouch
Completing chemo and radiation, and my first declaration of NED
A suspicious PET scan and surprise hysterectomy findings
HIPEC and major cytoreductive surgery
Ongoing immunotherapy and close surveillance
I’ve adapted to life without a stomach
I live with the fear of recurrence, but I’ve chosen joy
Finding strength and support through family, friends, and stomach cancer communities

My name is Niccole

I am a stage 4 stomach cancer survivor. I was diagnosed in August of 2021 at the age of 37, and I live in Arizona.

So, I am huge into travelling. Ever since my diagnosis, we have decided that we are going to travel the world because we do not know who is going to make it to what age. I am a realtor here in the Valley, and I love what I do. I do residential real estate. I work with buyers and sellers out here in the Phoenix metro area. I have two dogs. They are my pride and joy. I love them. No kids, so they are my fur babies.

Originally, the first trip that we ended up doing was on my bucket list. After I finished my chemo in 2022, we booked a cruise. We did a seven-day cruise to Alaska in May of 2022, and it was amazing. It was beautiful. We want to go back, and we want to do a land and sea cruise.

More recently, last year, we did a Mediterranean cruise. We started in Barcelona. We spent three days in Barcelona and then travelled the whole little coastal area. We went to Pisa and Florence, which were amazing. We ended in Rome, and we spent an additional three days in Rome. I think we were out there for about sixteen days. We have been to Ireland. We went to Lisbon, Portugal. We have been to the Canary Islands, so we have been all over the place. We still have a bunch of stuff to do on our bucket list, but those are some of the most recent trips.

Just getting to learn about the culture is why travel means so much to me. I really think it is important that we get outside of the United States because I really think it opens up our eyes. We really like seeing the churches and the history and just getting to understand where we came from, honestly. It is a lot of fun to see the different sights. There are so many cool things out there that are old.

Ireland was pretty cool. It was very, very wet. It rained a lot. We went in October of 2023, I think. We did a cruise. We are big into cruising, so we have done a lot of different cruises. It allows you to see multiple areas versus going to one location and then trying to figure out your travel and your stay and all that kind of stuff. The cruise line is pretty much your food and driver, and the place you lay your head.

I had a quiet travel year after a cancer recurrence and HIPEC treatment

This year has been quiet because I got busy with work, and then with the recurrence, I had surgery. We are coming up on a year in November. I had surgery in November because I did HIPEC with CRS, and that recovery was really, really rough. It was not until probably March that I was really back into—I do not even want to say normalcy, because I am still somewhat a little different—but I got more consistent with being able to do things and getting my energy back and all those types of things. So this year has been a little bit quieter on the travel front for us.

We have done a couple of things. We just got back from Holden Beach, North Carolina. But otherwise, it has been a soft travel year for us.

My early symptoms, and the first signs that something was wrong

At the beginning of 2021, none of the things that I had were really extremely “boom, in your face.” I was 37. I chalked up a lot of the things that I had going on to maybe stress with work, and just that, as we age, things happen.

We used to go and enjoy margaritas with the girlfriends. We would go out, and I would have a drink, and I would be in agonizing pain. I remember a couple of times we went out with some couples to have drinks. They were going to go out afterwards, after we did dinner and everything. They were going to go to another place, and I had to go home, because I was literally curled up in the fetal position because my gut felt so bad. So that was kind of the start of it.

I had lost a little bit of weight, but it was not significant. It was not a super extreme weight loss. I was struggling a little bit with getting full faster, and then it kind of progressed. That was probably all at the beginning of 2021, January, February time frame.

I had worsening symptoms, including acid reflux

Then things started progressing. Probably about the March-April time frame, I started to get a lot of acid reflux, and I had never experienced acid reflux before. It got to the point where I could not even lie down in my bed anymore. I would have to go sleep in our living room on the sofa, because the sofa was able to prop me up, so I was not lying down. If I lay down, I would wake up vomiting in my mouth.

I had started to take some over-the-counter medications. My family is all kind of in the medical field in one aspect or another. I had reached out to my uncle when I was having some of these problems and asked, “What can I take to calm some of this acid reflux and these intense symptoms? I am just feeling sick.” He advised me and helped me with some stuff, and I started taking some medication.

I am one of those people who reads the bottle and only takes it if I need it. That goes for pain medication and all that kind of stuff. I took it for 14 days, and it made me feel a little bit better. I thought, “Okay, this is great. I am feeling good.” The acid reflux had calmed down.

As soon as I came off of it, it got severely worse, to the point where if I ate anything by mouth, even drinking water, it made me vomit. It was making me so sick. The entire month of July 2021, I essentially spent on the sofa. I could not eat anything. We tried everything from crackers to chicken noodle soup, all of your grandmother’s secrets to help you feel better.

Of course, at the age that I was and with COVID going on, I had been healthy before all of this happened. I had no idea that I would be facing stomach cancer. So I did not have a built-up primary care physician or know where to turn. I was Googling and talking to people, and asking where I should go.

To get into anything then was insane because nobody was taking new patients. I finally got into a GI place.

My initial GI visit and missed testing opportunities

The woman I saw, her first plan for me was, “Okay, we are going to get you in for an endoscopy.” Nothing was leading up to that. We did not talk about H. pylori possibilities. We did not do a breath test. We did not do all these things.

She put me on pantoprazole. I have now learned, after the fact, that the first thing we should have done was test for these things, which I did end up coming back negative for—H. pylori and all that stuff. But I would have had to come off the pantoprazole, which was helping me with some of my acid reflux symptoms. I would have had to come off it for two weeks for them to actually even do the test.

The advice I had gotten from my family was, “Before we go to this extreme where they have to put you under to do the endoscopy, let us see what else we need to do first,” because that is a pretty extreme first step. So I ended up getting into a primary care office about a week after I went for this GI consultation, and that was even worse than my GI thing.

I had an alarming ultrasound and was urged to go to the ER

The only good thing the primary care provider did for me was to send me for an ultrasound of my stomach area. When I went in to get that done, the tech who did it asked, “When was the last time you ate?” I said, “I followed your directions. I have not eaten or drunk anything in the last 12 to however many hours. Why?” She said, “Because your stomach is full.”

She showed me the picture, and it was big and full. I was advised to go to the ER. I thought, “I am not going to go spend $1,000 at the ER when the estimate for doing this endoscopy was like seven or eight hundred bucks. I will just go back to the GI.”

It was a bit of a fight on that aspect, too, because the PCP was saying, “You need to go to the ER right now,” and was very insistent. I ended up going back and getting in with the GI. Instead of seeing one of the physician assistants, the GI actually called me to get me in almost immediately because he looked at my chart and the notes that the other provider had taken, and he got me in immediately.

Rapid escalation: scope, CT, and oncology referral

I went in, I think it was a Thursday, and met with him. The following week, he got me in for my scope. I think I went on a Wednesday for my scope. Friday, he had me in for a CT. The following Monday, he had me connected with his oncologist partner, who I still see today—my current oncologist.

I went in for my oncology consult and my surgical consult on Monday. By that following Thursday—so the same week—after my Monday consult, they had me in for a diagnostic laparoscopy and to place my port. This was all done before we even had my pathology back. We got my pathology back the same day that I met with my oncologist.

My oncologist called it without even having the pathology report back. He said, “You are either going to be a stage two or stage three, depending on what they find—how much it has gone into the stomach lining.” I ended up being a stage three when they went in and did the diagnostic laparoscopy.

The phone call, my panic attack, and hearing “oncologist”

Before I actually went in to meet with the oncologist, I received a phone call. I did not have any idea that it was going to be a cancer diagnosis. My GI doctor did not have the results yet, and he did not have the pathology. He said, “It could be cancer,” but there was no real discussion yet.

He wanted to fast-track me. I received a call from the oncologist’s office. I looked up what an oncologist was because I had no idea, and I literally almost died—or at least it felt like it. I looked it up, and, as I said, I had been struggling to eat. I had lost a bunch of weight.

I think I was at 109 pounds. I used to be about 130–135 pounds. When I started getting sick, I was about 120. By the time I actually got in and was diagnosed, I think I was at about 109 pounds, maybe 105. I cannot remember exactly now. I was not eating, and every time I ate, I was throwing up.

When I got that call, I had a panic attack. I literally had a panic attack to the point where I almost felt like I was going to black out. I could not move my hands. I was trying to text my boyfriend when I got this, and I was just really freaking out about it.

I am very blessed that I have some friends who live really close to me. Instead of me calling 911, I had a girlfriend who came over, and I had a couple of friends who came and visited with me and soothed me and calmed me down. It was a pretty freaky experience. It is not an easy diagnosis to get.

Involving my family and getting a second opinion

My second opinion was pretty much my uncle’s. When all of this started coming down the pipeline, I called him because he is essentially my dad—my dad is not in the picture.

My uncle has a medical background. He is a retired pediatrician and did a lot of education and other things, so he was my go-to for all of this.

When I found out about this, I called him immediately, and he actually flew out here to be with me for my first appointments.

Understanding the tumor location and the possible removal of my stomach

It is interesting when I talk to different people. When I talk to my significant other, he remembers things a little differently, but we both remember how intense it was.

When we went and met with the surgeon—again, this was all before having the actual pathology report back—my stomach cancer was at the base of my stomach. It was covering my pyloric sphincter. That was why nothing was going through, and it was all coming back up. Nothing could pass into my small intestine. I was not passing bowel movements or doing any of those types of things. It was all coming back up as vomit.

When I met with the surgeon, we were sitting in his office, and he was showing me this diagram. He said, “Okay, I am going to have to cut out probably at least 50, if not more, percent of your stomach. This is where your tumor is. It is at the bottom of the stomach, and down here is where everything is supposed to come through. This is all being blocked off. I am going to have to get clear margins and come up higher to wherever I get clear. I may have to take your entire stomach.”

That was freaky in and of itself. I asked, “What if the chemo works?” We were now having a conversation about both. We would start with chemotherapy and then go into surgery if chemo shrank the tumor, because essentially the plan was: start with chemo, shrink the tumor, and then go in and do the stomach removal to whatever portion he needed to — 30, 40, 50, or even 100 percent of my stomach.

Facing life without a stomach, and my initial treatment plan

My biggest question was, “How am I going to live without a stomach?” It is one of your most needed organs for processing food and nutrition and all those types of things. There are definitely ways around that, because I am still here. But it was terrifying.

We did the surgeon consult with that fear of his taking my stomach out, and then we went and met with my oncologist. The process was to do four rounds of chemotherapy and then have an endoscopy to see how much the tumor had shrunk or reduced in size. Then we would make the plan for getting me in for surgery.

I am a BRCA1-positive. I have BRCA1, which is the gene mutation that usually puts you at a predisposition for either ovarian or breast cancer. I actually do have breast cancer in my family. My mom passed away from breast cancer when I was seven years old. Her mom passed away about a year after her. I have multiple family members on either side who have had breast cancer.

Honestly, I thought that was going to be my cancer. It turned out that BRCA actually caused my stomach cancer.

Tumor disappearance, major surgery, and creating a new stomach pouch

My tumor actually shrank and was gone by the time we did my endoscopy before my surgery in November. I am coming up on four years celebrating my 80 percent removal of my stomach and my gallbladder. On November 4th of this year, it will be four years.

When we did my endoscopy before my surgery, my tumor was completely gone. I was very blessed that my response to chemotherapy was pretty much 100 percent. The surgeon went in and did an 80 percent removal of my stomach. They brought my small intestine up and attached it to my esophagus to whatever is remaining of my stomach up there. Then he created a little pouch for me. I no longer have a full stomach; I have a little pouch that they made with a hole in it that goes down into my small intestine.

He also removed my gallbladder at that time, too. There was no metastasis there, but they say that the gallbladder tends to become an issue with some of the things we have going on with this specific cancer. I am actually very grateful he took it.

Completing chemo and radiation, and my first declaration of NED

We did four rounds of chemotherapy, the surgery, and then I ended up having 25 rounds of targeted radiation. Then I had four more rounds of chemo. It was a process.

I got my first NED—no evidence of disease—in March of 2022. We continued on a PARP inhibitor that is supposed to target the mutation, my genetic mutation. We had me on that for about a year. We continued with scans to make sure nothing was showing up.

A suspicious PET scan and surprise hysterectomy findings

I had a PET scan that came back looking really weird in, I think, August or September of 2023. My oncologist was on me to get my ovaries removed because the PET scan was showing some weird stuff down by my ovarian area. They were uncertain exactly what it was or what it could be.

I finally decided to do a total hysterectomy. In April of 2024, I got scheduled and went in for my total hysterectomy. That surgery was estimated to be an hour and a half, but ended up taking four hours. He brought in a second surgeon because I had metastases to my ovaries, my tubes, and my peritoneal lining. It was on my spleen and my liver. We also found out there was some in my small bowel.

Again, I have been very blessed with my team of doctors. He could have easily said, “I am not touching this,” with the amount of metastases he found. Instead, he brought in somebody else to help, and they removed everything they could within the scope of the hysterectomy.

We proceeded to start me on chemotherapy again, just on a different drug. I asked my oncologist, because it went into my peritoneal area, if we were going to do something called HIPEC.

HIPEC and major cytoreductive surgery

We found the recurrence, and we decided to get me back on the old chemo drug. I talked to my oncologist about doing HIPEC. He referred me to my HIPEC surgeon, who was amazing. We got me qualified.

I think I had five or six treatments of that one particular chemo drug. We ended up having to take me off one of those drugs because I was having some really bad allergic reactions to it. That kind of chemotherapy is intense. It really affects your body.

I met with my HIPEC surgeon in, I think, July of last year and went in to get my PCI score done to make sure that I could qualify for HIPEC, which I did. I think I ended up with a score of 10 or 11. I qualified for HIPEC.

The first HIPEC that we scheduled was at the end of September last year. It was done laparoscopically. They did three incisions, one on either side of my abdomen and one in the middle so they could have the camera in there. Then, five weeks later, they had me come back and do open surgery. He did open HIPEC with CRS, cytoreductive surgery. He went in and removed all of the tumors that he could see or cancerous areas that were questionable.

He also did a splenectomy. They removed my spleen, two feet of my small intestine, the spot that was on my liver, and anything else they could find. That was my big surgery back in November last year.

Ongoing immunotherapy and close surveillance

We have had me on immunotherapy since my recurrence in April of last year. We are also doing a ctDNA blood test called Signatera. Unfortunately, my last Signatera test just came back showing positive. We do not know if it is a false positive or not.

Right now, the plan is to have me on immunotherapy for two years, starting last April when we started it. I still have probably another 6 to 8 months, potentially more, depending on how my body holds up to it. Currently, I go every six weeks for immunotherapy.

We do all the scans. I had a PET scan done in June. We just did a CT scan. I am going for another endoscopy and colonoscopy here in the next month or so. We are on surveillance at this point, along with the immunotherapy.

They cannot really do anything with any of the positive tests until they see something again. That is kind of where we are sitting. Every three months, I am doing a scan. Unfortunately, none of my stuff shows up on my scans. A CT scan is just protocol with this, but I do not ever expect to see anything.

If my next Signatera test comes back positive, the plan would be to go in for another diagnostic lap to see if they can find what or where the potential cause of the DNA showing cancer circulating in my bloodstream is.

I’ve adapted to life without a stomach

The biggest challenge has been the lifestyle change. Losing your stomach is huge. When they first did my stomach removal, there were a lot of things I could not eat. You have to be very cautious and conscientious about what you are putting into your body, which, I mean, we all should be, but especially after this kind of surgery.

When I first had my surgery, I would go into severe dumping if I ate certain things. The first six to eight weeks after my stomach removal, I could not eat any bread products or pastas or those types of things. I could not have coffee because it would just put me in the bathroom.

Now, four years out, I have gotten used to my new way of eating and drinking. I have to have a plan. I feel like I am always continually thinking about eating because I have a very small pouch. I do not have a stomach, so I have to continually eat throughout the day. If I forget, you will know, because “hangry” is definitely a thing. My boyfriend will say, “When was the last time you ate?” and I am like, “Oh, was I that mean? I am so sorry.”

I live with the fear of recurrence, but I’ve chosen joy

It is always at the back of my mind: When is the next recurrence going to happen? I will be completely honest. I live my life, and I live my life to the fullest, but it is always going to be there.

When people ask me, and we talk about it, and I say, “Oh yeah, I have been NED since last year,” they say, “Oh, congratulations, that is great.” And it is. I will live my life to the fullest, and I will do everything every day. I tell people that we could all walk out tomorrow and get hit by a car, to be honest.

But I feel like I live my life differently because I know that I may not make it another twenty years.

Finding strength and support through family, friends, and stomach cancer communities

I am much more on Facebook than I ever was before this diagnosis, but I had the same question as a lot of people: I had no idea. Stomach cancer is not a very well-known or talked-about cancer. It was actually quite difficult for me in the beginning to find people who were like me.

My family was all very helpful. My cousin’s wife recommended that I get on Facebook and look at some of the different groups that were specific to stomach cancer. I ended up connecting with a couple of different organizations.

One that I am really involved with is called Debbie’s Dream Foundation: Curing Stomach Cancer. They are based out of Florida. We do a lot together. I do mentorship with them because they offer a mentorship program. If people want or need help and want to know about treatment and different things, I am really active with them for that, and for advocacy.

We go to Washington, D.C. every year to talk to our legislators to make sure that they continue funding stomach cancer research and allocate funds to our specific disease. Stomach cancer is one of the top five deadliest cancers, yet it receives a very minimal amount of funding for research.

We go every year for advocacy with them. I am also part of a smaller group called Hope for Stomach Cancer. They also do a lot of education—so does Debbie’s Dream—with different symposiums and things. Hope for Stomach Cancer also does the same thing.

We call each other family, to be completely honest. Next month, I am going out [to Los Angeles] because November is Stomach Cancer Awareness Month, and Hope for Stomach Cancer is doing a patient summit in LA. I am going to see some of my “family” and get some good knowledge on what is going on in the stomach cancer world.

Thank you for sharing your story, Niccole!

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Amy’s Stage 4 LAMN Appendix Cancer Story

Post author By Chris Sanchez
Post date January 16, 2025
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January 16, 2025

Amy’s Stage 4 Appendix Cancer (LAMN) Story

Amy, a 52-year-old art teacher living in upstate New York, shares her journey after being diagnosed with a rare appendix cancer, low grade appendiceal mucinous neoplasm (LAMN) in May 2023. Although she had a history of stomach issues, diagnosed as IBS, Amy decided to undergo medical checkups due to past experiences with her father, who passed away from leukemia when she was 15.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Amy’s story began with a routine colonoscopy in February 2023, during which doctors discovered a small bulge in her appendix. Although it was initially deemed non-threatening, a follow-up CT scan revealed appendiceal nuclei, prompting her to undergo an appendectomy in April 2023. Though the procedure appeared to be successful, Amy anxiously awaited the pathology results.

Soon afterwards, Amy learned she had appendix cancer, the same rare condition her sister-in-law had been diagnosed with, leading her to Memorial Sloan Ketterin g in New York City. As she adapted to this unexpected turn, Amy sought support through a Facebook group for appendix cancer patients. There, she discovered the rarity and complexity of her condition, often misdiagnosed as ovarian cancer among women.

At Memorial Sloan Kettering, Amy underwent a significant surgery in June 2023. Her slow-growing cancer meant she did not receive the CRS-HIPEC treatment, common for appendix cancer. Fortunately, her prognosis was better than her sister-in-law’s due to differences in pathology. Her PCI score, used to assess cancer spread in the abdomen, was a low 3, indicating minimal spread (scores range from 1-39, PSOGI).

Amy now faces regular scans every few months to monitor her condition. Her outlook on life has shifted, embracing her present rather than fearing an uncertain future. Despite being at stage 4, Amy remains positive, focusing on living without fear while cherishing smaller joys.

Amy advocates for listening to one’s body and acting promptly on health concerns, emphasizing that time is crucial with cancer diagnoses. Her experience underscores the importance of thorough research, finding emotional support, and demanding the necessary care, like physical therapy, to maintain quality of life. Her journey highlights resilience in the face of rare cancer, stressing the importance of early detection and proactive health management.

Name:
- Amy M.
Age at Diagnosis:
- 51
Diagnosis:
- Appendix cancer (low-grade appendiceal mucinous neoplasm [LAMN])
Staging:
- Stage 4
Initial Symptoms:
- Irritable bowel syndrome
Treatment:
- Surgery (appendectomy)

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

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

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

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

Thank you for sharing your story, Rachael!

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Rachel’s Stage 3B Ovarian Cancer Story

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Rachel was diagnosed with stage 3B ovarian cancer when it was discovered after a year of trying to conceive. She was having annual gynecological check-ups and normal blood work, so she dismissed her symptoms as common female issues. It wasn’t until she underwent fertility testing that a mass on her left ovary was discovered, confirmed by a high level of CA-125. Surgery was quickly scheduled, during which the tumor and her left ovary were removed, and she was diagnosed with stage 3B ovarian cancer.

Before starting treatment, Rachel underwent two rounds of IVF to preserve her fertility, producing five embryos. She began chemotherapy, underwent a second surgery to remove her remaining ovary and undergo HIPEC, and finished her treatment with another three rounds of chemo.

Throughout, Rachel relied on her strong support system, including her husband. They moved back to Pittsburgh to be near family during her treatment. Mentally, she found strength in the temporary nature of her ordeal, journaling, daily devotionals, and staying physically active when possible. A friend’s advice to shift her mindset from “I have to” to “I get to” was a crucial part of her coping mechanism.

Despite the initial relief of finishing treatment, Rachel faced the disappointment of learning that, despite her tumor not being genetic, it resembled BRCA-positive cancer, requiring her to be on a PARP inhibitor for two years. This affected her plans for immediate motherhood, with the possibility of using a surrogate for their first child while she heals.

Rachel’s experience transformed her perspective on life. She values her connections with others more deeply and approaches life with greater intention and appreciation. While she acknowledges the challenges and fears of cancer returning, she emphasizes that this difficult experience has made her stronger, more fulfilled, and more grateful for the life she has.

Name: Rachel D.
Diagnosis:
- Ovarian Cancer
Staging:
- Stage 3B
Symptoms:
- Infertility
- Night sweats
- Severe periods
- Bloating
Treatments:
- Surgeries: oophorectomy (initially to remove the tumor & left ovary then the right ovary after IVF)
- Chemotherapy: CarboTaxol (carboplatin and paclitaxel) & HIPEC
- PARP inhibitor: Zejula (niraparib)

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

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

Thank you for sharing your story, Rachel!

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Alli’s Stage 4 Appendix Cancer Story

Post author By Chris Sanchez
Post date July 25, 2024
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Screenshot

July 25, 2024

Alli’s Stage 4 Appendix Cancer Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Nine years ago, Alli was diagnosed with colon cancer, but what she actually has was appendix cancer–and she only found that out many years later. She is currently NED, or “no evidence of disease,” and in her words, “It’s taken a lot to get here.”

Alli had initially experienced intense abdominal pain, which had been diagnosed as appendicitis. Her appendix was successfully removed, but its “angry” appearance led her doctors to send it to pathology for a closer look. It was initially diagnosed as colon cancer because it behaved like colorectal cancer. She then underwent surgery to remove a portion of her colon.

Alli was declared NED and enjoyed 7 years of being cancer-free before she experienced what seemed to be a recurrence of her colon cancer, but her doctors finally determined that what she had was actually stage 4 appendix cancer.

Alli is sharing her story not only to stress the importance of proper diagnosis and treatment as well as advocating for oneself, but also to help shift perspectives regarding stage 4 cancer and how it may not necessarily be a death sentence; to establish the importance of properly listening to one’s body; and to reframe healing after cancer as an opportunity to build a better, more complete version of the person one used to be.

Name: Alli M.
Diagnosis:
- Appendix cancer
Staging:
- Stage 4
Symptoms:
- Severe abdominal pain
Treatment:
- Surgery (right hemi colectomy, appendectomy, HIPEC)
- Chemotherapy (adjuvant chemo in 2014; after recurrence, 6 rounds of oxaliplatin with avastin and xeloda)

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

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

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Despite her situation, Faye has found reasons to be positive and happy—and she is also driven to make a difference. She shares her story with us as part of her ongoing initiative to shed light on this rare kind of cancer and to let fellow patients know that they are not alone in their journey.

Name: Faye L.
Diagnosis:
- Pseudomyxoma peritonei (rare appendix cancer). Low Grade Muccinous Neoplasm of the appendix
Initial Symptoms:
- Severe bloating
- Bad stomachache, especially after eating spicy food
- Elevated CA 125 levels and tumor markers (attributed to an ovarian cyst)
Treatment:
- Hyperthermic intraperitoneal chemotherapy (HIPEC) surgery; removal of spleen, gallbladder, appendix, ovaries, uterus, womb, fallopian tubes, belly button
- Chemotherapy used: mitomycin C

RARE CANCERS Appendix Pseudomyxoma peritonei Faye Louise

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

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

… I appreciate waking up every day getting to see flowers or the sky, and it’s just minute little details now that you really do notice.
… You know, you just take in a lot more when you’ve had to fight for your life, which is what I’ve had to do.

Introduction

My name is Faye and I am from the United Kingdom.

I’m 39 years of age and I was diagnosed with a very rare form of appendix tumor called pseudomyxoma peritonei.

This is around a 2 to 3 in a million per year diagnosis, which obviously makes it extremely rare.

It behaves in a very strange way. I had it for 5 years and I didn’t know it was there.

It’s not your normal cancer where you’ll get nausea, you’ll feel the sickness, you’ll go, hold on, I’m not well here. It wasn’t like that for me.

Before diagnosis, I always loved to be active, traveling, going out with my dog and my partner, and just enjoying life.

Pre-diagnosis

Ovarian cyst

I just went in for an ovarian cyst which had grown to 17cm on my ovary. And then I came home with a cancer diagnosis. It was totally unexpected. It was a shock.

The only thing that was causing me problems was the cyst itself, bloating, tummy ache. And I just thought it was my period pains.

So my ovarian cyst made me very, very bloated. I was having severe stomach ache. When I ate, I’d feel full quite quickly like I’ve really bloated out, and I’ve not really eaten that much. And having tummy ache after I’d eaten certain foods like spicy foods I found didn’t agree with me anymore.

I also had elevated CA 125 levels and tumor markers. But the cyst can cause the CA 125 to be elevated, so there was no suspicion of anything cancer related before I went in for the cyst.

Operation to remove cyst and appendix

The only thing that my CT scan ever showed was inflammation of my appendix.

Even on the morning of the operation, my doctor actually said to me, I think possibly you’ve got a bit of endometriosis. So if that’s in there, I’ll scrape all that.

And the reason they found the tumor is because they agreed that when the gyno was in there, obviously doing the surgery for that part, that the bowel surgeon would join in on the surgery towards the end and he would come and take my appendix out. Just so I wouldn’t have any further complications later on down the line with appendicitis and have to have another surgery.

And yeah, even on the morning of the operation, I was like, I’m so scared. And I’ve been under anesthesia before. I was terrified that I just wouldn’t wake up. And then they just put me under.

And then I woke up in the evening on the same day and they said everything went well, the cyst was out.

And I said, is that it? It’s done with. And she said, they’ve taken a few samples of things. They will explain to you in the morning when they see you how the operation went.

I kind of read people and you can kind of tell if they’re trying to play things down. But there was no indication that they were trying to hide anything from me at all.

Discovery and diagnosis

So the doctors came in and said that the cyst operation went really well. We got the cyst out. However, we couldn’t take your appendix.

I’m really sorry, Faye, but we found a tumor on your appendix. We found a cancer.

Immediately they started to talk about further steps.

As it turns out, the tumor had ruptured. They brought up an operation called a right hemicolectomy, where they would get the deposits that had leaked outside of my appendix wall, because that’s where the tumor had ruptured inside the appendix. And then it releases a mucinous gel that just spreads all around your abdomen. And obviously it had broken through the appendix wall and it had reached into my abdomen.

They told me, I’ve got a few deposits on my small bowel and that’s it. So it’ll be a right hemi.

And they’re waiting for the biopsy results. But—they also left the cancer inside, which I couldn’t get my head around at first.

I was like, how can you not take the appendix out? How can you leave this tumor inside of me? Like, you don’t know what it’s doing?

And they were like, it’s doing nothing. It’s been there for a very long time. It’s extremely slow growing, and we’re certain leaving it in is the best thing for us to do until we get the biopsy.

And in hindsight, it was because I have heard cases since I’ve been thrown into the world of pseudomyxoma. I’ve heard cases where they’ve removed the appendix and unfortunately, some of the cells have spread further up the body, and then it’s become a different scenario for people.

So in hindsight, yes, they did me a favor, but it was very strange knowing that they’d found this cancer and they just left it there until I had, you know, the biopsy results.

Delays in receiving the diagnosis

I was told that it would take 2 weeks to get the results back. It ended up taking 6 weeks.

We had to raise a complaint because it just made me spiral.

Every Tuesday they would phone me and say, I’m really sorry we haven’t got your results back. And I’ll be like, but I’m in my bedroom here with the curtains closed, looking at funeral plans because I don’t know what this is or the extent of it.

You’re telling me that it’s nothing. But what if those results show actually you’re wrong and it is something a bit more serious?

So I was in the world of the unknown and I just didn’t know how to process it, what to think, what to do.

I had no motivation. I didn’t want to go out. I just thought, I’m going to die and I need to plan my funeral.

The official diagnosis

And then the 2nd of September is when I finally got the official diagnosis.

So they phoned me, and my partner answered the phone purely because I just didn’t want to answer the phone. If they were going to tell me that they’re not back again.

And my partner, I heard him say, okay, so it’s low grade. And then, yeah, the official diagnosis was that I have something called pseudomyxoma peritonei. It’s a low mucinous neoplasm.

And I asked her, okay, so the surgery is still going to be a right hemicolectomy. And she said, we need to refer you to our colleagues at Basingstoke who specialise in this type of cancer, and they will give you the best treatment that they can.

And I just said, is it going to still be a right hemicolectomy? And she said, I don’t think so. Basingstoke will tell you a little bit more when they get the referral, which we’re going to send shortly.

Colonoscopy

So I got diagnosed properly on the Tuesday.

I had to get a colonoscopy done, just to make sure that my large bowel wasn’t involved in any way.

My scans showed there wasn’t any involvement, but he wanted to be thorough. And, yeah, I had that done, and that was clear.

Because that’s how they found my mom’s bowel cancer. I lost my mum to bowel cancer two years ago.

So I was obviously very terrified of having a colonoscopy, thinking, you know what? If something else comes here to railroad me now and they found a polyp, or there’s something else going on, you’re just very irrational, but it’s so difficult not to be.

Reaction to the diagnosis

I guess until you’ve heard the word “cancer” yourself, it’s very difficult to imagine how one feels when you hear those words. It’s like the whole ceiling was just closing down on me.

You see, because of my mom’s passing due to her bowel cancer, I was kind of like, oh, okay, here we go again. History is repeating itself.

And there was a mirror directly in front of the bed. And I just looked into the mirror at myself and I just said to my partner, this is it. I’m going to die.

Treatment

Hyperthermic intraperitoneal chemotherapy (HIPEC) surgery

So I underwent something called “mother of all surgery”. Complete cytoreduction surgery, CRS with heated chemotherapy, HIPEC.

The operation took 11 hours, and I had to lose 8 organs to ensure that they got all the cancer out of my body.

So what they do is remove all visible evidence of disease. So in order to do that, I lost my spleen, gallbladder, appendix, ovaries, uterus, womb, fallopian tubes. I had to have a full hysterectomy.

The doctor did say that my ovaries were quite healthy. However, if I do not agree to them taking everything, I’m a ticking time bomb, so they had to go too.

I had to lose my belly button as well. They scraped my diaphragm. They scraped my pelvis from one side of it to another. They took my greater and lesser omentum, which is the fatty apron in your whole abdomen, in your tummy. And they took a little bit of the liver and scraped the liver off for good measure.

And then I had heated chemotherapy applied directly into my tummy—110 Fahrenheit of chemo blasted into me. It’s just a chemotherapy wash to kill out any cells that may be hiding away and can’t be seen with the human eye.

Basically, you’re like a stew on the hob. That’s the only way you can sort of describe it. You’re a slow cooker, you know, they’re just stirring around every 15 minutes.

Quite honestly, I didn’t expect to survive the operation.

On the day that I went down to theatre, I said to my partner, look after the dog. Your mum’s got the Christmas presents.

I did know the mortality rate was extremely low. And the doctor did say that, you know, you’re young, you’re healthy, you don’t smoke, you don’t drink.

I had also worked on fitness well up until the operation, because it’s advised that you really get your protein levels and your muscle built up to give you a head start. So, yeah, obviously building yourself up was advised because that gives you a head start on the recovery.

So I had the operation at 7:30 a.m. on the 1st of November. I believe that my partner got a call maybe about 6:00 or something to say that it was completed maybe 530, 6:00. And that I was in intensive care and they were going to keep me asleep. And they’d phoned him on Thursday to let him know when they’re going to wake me up.

So when I did wake up, I was just like… Oh. Okay. I’m here.

It was a very surreal feeling. I thought, I’m having an out of body experience. Am I not here or am I here? And then I remember feeling that my lips were just extremely dry. My throat was so dry. Obviously I had an NG tube right down my throat, which was really uncomfortable.

And yeah, I just remember saying to the lady, I’m dry, I’m thirsty, I can’t really swallow. And she just said, you’ve got a tube down your throat, so try not to move. I’ll get you a bit of water. And then she just wet my lips with a tissue and told me to just lick the water off my lips, because I couldn’t swallow water straight away.

And then she said that your surgeon’s just here waiting to see you. And then he stood by the side of the bed, and they were just asking me questions like, do you know where you are? And I was like, I’m in Basingstoke, the peritoneal malignancy unit. And they’re like, yeah.

And then Alex was like, hey, Fay, do you remember me? And I looked up and I was just like, Alex. I had to feel his arm just to make sure. Like you’re actually here. And he just said the operation went really well. Better than we expected.

And I’m pleased to say that we got it all, and there’s no more cancer.

And at that point I was just like, you got it all. It’s all gone. Like the whole nightmare was just over. And he said, yes, we’ve got it all.

He then said, I’m going to leave you to rest now. Your partner’s on his way.

And, yeah, they just left me in ICU till the Friday evening when they transferred me to the ward where my recovery really did begin.

When I came out of the surgery, I lost 10 kilos. I lost a lot of muscle mass. There was nothing to me. I was just a skeleton.

Recovery from treatment, and moving forward

So I first went to the ward to recover.

I think for the first few days it’s quite a blur, though I do remember some things.

I was on morphine. I had like a PCA where I’d administer my own morphine, just press this button. It would refresh every 12 minutes.

I had an epidural in my lower back. I had bowel stents. I had massaging boots for DVT, blood clots on my legs, which were very noisy and annoying. But therapeutic at the same time to get me to sleep in the evening.

I remember being told that I could have some jelly and soup on day four. They came around with the lunch trolley, and they were wanting to order me a lunch. And I was like, what? Me? No, I can’t eat. And they were like, no, you can, you can have soup and jelly now because you’ve opened your bowels. And I was like, oh, okay.

So it actually felt good to pick up a spoon and feed myself because I had this NG tube up my nose, which was so uncomfortable. I think for me that’s the worst part.

And the chest drains. I had six chest drains. I had two here, two in my waist and two at my pelvis, so they were quite brutal when they pulled them out. A lot of people say like, oh, it doesn’t hurt that much. No, they really do.

And I just had so many wires and lines and it was just very surreal.

And even more so that I was now there without any cancer because I was on the ward where other women, sadly, have gone in for the same procedure, and there’s 20% of cancer that’s embedded deeper into organs that are too vital, they can’t touch. So they just are on palliative care. So yeah, it’s not a very nice place to be.

Day six. They took my epidural out of my back. And then I was like, oh my God. And they showered me and patted my hair for me because obviously I didn’t have much energy to even lift my arm to clean my teeth.

And then I felt like, wow. Like I feel a different person, like all this stuff’s gone. But boy, that evening did I get the mother of all gas pain? As soon as they had the epidural out, I felt everything. Everything.

I had 14 hours of trapped gas that I was literally begging them to give me more peppermint tea or more peppermint water or painkillers. And they were like, we can’t give you painkillers. It won’t make a difference. You need to try and pass it naturally. But I had a 16-inch scar down my middle from the operation.

And that was that was quite an ordeal, trying to trying to get that gas out that had built up in my tummy. It was really, really painful.

… it’s just about trying to get back to things that you used to love before. Thinking that you can never get them back.
But you will.

How she is doing today

Fast forward to today, and I’m still going through recovery.

On the 1st of June I was seven months post-op. It’s up to 12 months.

So recovery has been very up and down. It’s not linear. It’s quite hard hitting on the body, it’s brutal, not a walk in the park. I’m not going to wrap it up for anyone and say it’s easy, because really it isn’t.

I think I started to feel better, more myself, probably around the 3-month mark. So the surgeon did say to me, for some reason, we don’t know why, but it seems to be between the 8- and 12-week mark that patients suddenly say that they feel that they’re more on the up than before.

I started to get on the exercise bike gradually, as advised by the physio. I did five minutes increasing it to seven minutes, ten minutes. And I have actually gone to 40 minutes now.

I still struggle, you know, I still get a bit of fatigue if I overdo things. Driving my car is a little bit uncomfortable if I drive long distances. I haven’t been able to stand and do any washing up or cooking as of yet. Because I still get a bit of discomfort around the tummy where my scar is. But yeah, I’m getting there.

I mean, I’ve been out with my dog, which was really nice because I didn’t think I’d ever be able to walk him again. And it’s just about trying to get back to things that you used to love before. Thinking that you can never get them back. But you will.

I went back to work. I’m on a phased return. I work at the airport, so it’s quite physical and busy.

Yeah, it’s just the new normal. They call this the new normal. And it’s just about getting to know your body again.

Thankfully, I haven’t had any problem with food. I know a lot of patients have had issues. They can’t have onions, they can’t have steak, they can’t have certain foods. But me, thankfully, I haven’t suffered too badly with food.

When I came out of hospital, it was jelly, ice cream, soup, just liquid, you know, a very low residue diet. So my bowel could just fully recover and just heal. But internally, I’m still healing to this day.

20 years of scans

Some have said that my treatment was like ringing a bell. But it actually isn’t.

I’ve got 20 years of scans. I’ll have scans annually for the first 6 years. And then at the 20 year mark, I’ll skip 1 year at 6 years and go to 8 years, and then it’s 10, and then I believe it’s 14 and then 16 and then 20, I think is when I’m officially cancer free if I’m still OK by then.

So for now, I just get called NED. No evidence of disease. Because they said, you’re not out of the woods just yet.

Trying to process that I’m under scans for 20 years is mentally difficult. It’s like you said, with normal cancers, you’re in remission for 5 years and that’s it. You know, you’re free. Off you go. So yeah, to have 20 years hanging over my head is very difficult to process and get my head around.

However, on the flip side, a lot of people say, at least you’re being under surveillance for 20 years. You know, a lot of us get 5 years and then no more. And then we sit wondering like, oh, okay, I’m on my own now. Am I okay?

But yeah, I mean, being so young, like age 39, I won’t be declared cancer free till I’m 59. So that for me, is a lot to try and process mentally.

One scan between 39 and 59. One scan could change my whole life again. And then, you know, some people have to have a second surgery. There has been reoccurrence, but there’s 20% get reoccurrence, and that’s across all grades.

I guess I’m lucky that I had low grade, where, you know, it’s not the aggressive type Yeah, it’s very strange trying to get your head around that.

My first scan’s this coming November. I haven’t had any scan since I’ve come out of the surgery, so I’m quite nervous, anxious about this upcoming scan. And I have been since I came home last year in November.

You know, on my first scans coming up now, is it going to show me that they actually got it all, or is there going to be a cell there that was there that’s now had a year to do something, and they’re going to tell me they can see some mucin again on a scan. You just think all these things.

A lot of people say like, don’t look at the future, look at the now. But I think it’s easy for people to say that when they’re not in the situation that I’m in and others are in.

You know, I know people say stuff to try and play it down to make you feel better, but on the flip side, it really doesn’t make you feel better when people try and say to you like, don’t look in the future, look at the now. And it’s like, well, I’m sorry.

My future is, you know, scans for 20 years. And that’s a reality of my life and that’s my future.

No hair loss

I also wanted to share that a lot of people say to me, you didn’t lose your hair. Hey, I had heated chemotherapy blasted directly into my tummy as part of my HIPEC treatment.

Thankfully, I haven’t had to have “proper” chemo because this cancer very rarely or doesn’t really spread through your blood or your lymph nodes. It stays very localized in the abdomen and that area.

Sure, it’s a hard cancer to combat. You have to have the massive surgery to do it. But it’s also one of the easiest cancers to get rid of because it doesn’t usually spread anywhere else like your brain, your lungs and things like that.

So, yeah, you don’t lose your hair with that.

Reflections on her experience

I think with my mum dying from bowel cancer, I always had the fear of cancer. Like, you know, I’m a mum’s daughter. It’s genetic. It’s hereditary in some certain cancers. But I never imagined that I would have it this soon.

So, yeah, my perspective on life just changed massively.

I’ve got no time for people’s drama. I’ve got no time to argue. I just want peace and to just live life.

And, you know, I appreciate waking up every day getting to see flowers or the sky, and it’s just minute little details now that you really do notice. Whereas before you could be like, you know, it’s just a tree. Yeah, it looks pretty. But now it’s like, wow, look at that tree.

You know, you just take in a lot more when you’ve had to fight for your life, which is what I’ve had to do.

… that’s the world that you go in after you’ve had cancer.
You just hope for the best. Really.

Why she’s telling her story

And that’s why I went out and decided to tell my story from my admission into hospital, because when I was diagnosed, there was there was no information for me about this cancer.

I felt very alone and isolated, and I just don’t want people to feel that way.

And anyone that’s newly diagnosed with it now hopefully sees my page or my story and and they will have a better understanding and think, wow, you know, she’s lost 8 organs and look at her, she’s survived. She’s living, she’s cancer free. I can do this as well.

So it’s just about giving someone hope because I think anyone with a cancer diagnosis— that’s all you live on now: hope.

You hope it doesn’t come back. You hope that you get to see your retirement age. You hope that you go forward with your life now without any cancer, and you hope that every yearly scan is clear.

And that’s the world that you go in after you’ve had cancer. You just hope for the best. Really.

Going global

My story has been shared and read all around the world. I mean, I never expected to be global in my wildest dreams.

The press approached me here when I was diagnosed because I’ve got a modeling background. I had quite a following on Instagram. Which is why I decided to spin that now. I don’t want to be the model version of me anymore. I want to go out and spread awareness and use my platform that way.

And when they approached me after I was diagnosed and I just said to them, look, there’s not really any story just yet, you know what? You’re going to have to wait until I’ve got something to tell. Because after undergoing the mother of all surgery, you want to show people that it’s possible that you can survive it and you can come out of it.

So they waited for me. And December, my story dropped with one of the newspapers here as an exclusive. And then that was it.

Next thing my friends are texting and saying, you’re in Tunisia and Turkey and Hong Kong and Brazil and Sao Paulo. And they’re sending me screenshots of the news articles. And I’m like, well, okay, this is insane.

So yeah, I’ve gone global 29 countries and counting. Yesterday I was in the news in Denmark, which a friend showed me.

And I’ve got more media coming. I’ve coming out this month in the UK health magazine. I’ve got radio interviews lined up.

And obviously I’ve done my own reels on my page and Instagram, just about HRT, because obviously I’ve lost all my reproductive system. How it is with the HRT, what women can expect, what the methods are.

I started to do it because like I said, when I was diagnosed, I didn’t know what to expect at Basingstoke. You know, I went in two days before the surgery to prep me and I didn’t know what to expect. So I thought to myself when I was in my room that night, right, I’m going to start vlogging day one. What it’s like here, what I’ve had done day two.

And yeah, just the morning before the surgery and I just carried it on all through my recovery, I’ve been documenting and just vlogging everything and yeah, just to give people hope.

Supporting campaigns

Locally, I’ve also been doing a lot to support campaigns that fight cancer and help fellow patients.

Cancer Research UK are a very big organization here in the UK. They reached out to me and said, you know, we’ve seen your story. We think whoever hears it, it will have an impact on them. So we’d like to bring you in on a campaign.

And now I’m doing race for Life in Brighton. They’ve chosen me to be the face of race for life in Brighton. So I’ll be starting the horn off to sound the race. And I’ll also be doing a little speech on stage on the day. I signed up for a 10-K. I don’t know if I’m going to complete it.

So loads of people have just wanted to bring me on board and it’s great. It really helps to spread the awareness, but show people that we’re not just a statistic.

You can go out and you can still rebuild your life after cancer. Yes. It’s hard. I’m not going to say it’s easy, but it’s all you can do, right?

We’re still living. We’re still breathing. So just enjoy it.

… just have the faith that our bodies are stronger than we realize.
… my body has done amazing work and still is doing amazing work to get me where I need to be.

Closing message

So my message to people that are watching this is yes, it’s scary. Yes, it’s overwhelming. And it’s fearful. But you know, you’re not alone in those feelings.

Anyone that has been down this road, all your feelings are valid through the whole of your journey. You know, it’s how you feel about it. So don’t let anyone tell you any different.

If you need to cry, cry. If you need to scream, scream. But just have the faith that our bodies are stronger than we realize.

And I’ve learned that going through this major surgery that my body has done amazing work and still is doing amazing work to get me where I need to be. So never give up.

I’m also going out to show people that cancer’s not pretty.

You know, I documented when I was in hospital crying all through my recovery. Like, this is brutal. I can’t cope. And it’s important because I think I’ve had the modeling background.

People just think, oh, you know, pretty girl, images are photoshopped and edited. Of course they are photographers’ and editors’ images. But it’s important to show people the reality of it, as much as it’s hard hitting and it can be triggering for some people to see.

And that’s what I think will help people, especially newly diagnosed people in the future.

“My God, it is a journey. But she got there. So hopefully I will, too.”

Thank you for sharing your story, Faye!

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Viola and her mother began to do research, and discovered another treatment called HIPEC that could help. But this was not something she could automatically avail of. The doctor who administered HIPEC would need to check her CT scans to see if she could undergo this treatment. Thankfully, the doctor and his staff later agreed to treat her even without seeing her CT scans.

In a 10-hour operation, the doctor removed her stomach, ovaries, gallbladder, and part of her small intestine and big intestine before administering the chemotherapy drugs that are part of HIPEC. Viola’s response was positive, and she was discharged after a stay in intensive care to heal at home, where she carefully resumed her athletic activities to help herself recover.

Months later, however, Viola was back in surgery because she had to constantly use the toilet, and upon arriving at the hospital she started vomiting and could not stop. She underwent a 6-hour operation to deal with her intestinal issues.

But Viola’s body continued to refuse to absorb nutrients. A few months after the surgery, as advised by another oncologist, and despite the objections of her own oncologist, Viola took a gamble and stopped her chemotherapy treatments. The gamble paid off: her condition normalized. Moreover, a checkup revealed that her cancer was gone, which quarterly checkups continue to verify.

Viola’s story is testament to her strength and positivity, to her refusal to accept the status quo and undergo standard treatment, and to her unwavering belief in herself.

In addition to Viola’s narrative, The Patient Story offers a diverse collection of stories about stomach cancer. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.

Name: Viola K.
Diagnosis:
- Stomach Cancer
Staging:
- Stage 4
Symptoms:
- Persistent fatigue
- Weight loss
- Occasional pain
- Persistent weakness
Treatments:
- Chemotherapy – FLOT (fluorouracil, leucovorin, oxaliplatin, docetaxel)
- Surgery with Chemotherapy – HIPEC (hyperthermic intraperitoneal chemotherapy) (surgery, chemotherapy)
- Second operation on intestines

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

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

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Viola's Stage 4 Stomach Cancer Story
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Cancer is just an opportunity to prove how strong you are.