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 with us today 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. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Symptoms: Severe bloating, bad stomachache, elevated CA 125 and tumor markers Treatments: Hyperthermic intraperitoneal chemotherapy with mitomycin C (HIPEC) surgery; removal of spleen, gallbladder, appendix, ovaries, uterus, womb, fallopian tubes, belly button
Symptom: Severe abdominal pain Treatments: Surgery (right hemisphere colectomy, appendectomy, HIPEC), chemotherapy (adjuvant chemo in 2014; after recurrence, 6 rounds of oxaliplatin with bevacizumab & capecitabine)
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Faye is in recovery from surgery for a rare appendix cancer called pseudomyxoma peritonei, and she is eager to share her story to help others who may be struggling with the same or similar health concerns.
Faye’s appendix cancer was discovered entirely by accident, in the course of treatment for an ovarian cyst. Though she has a family history of cancer—her mother having succumbed to bowel cancer just a couple of years ago—she did not expect her diagnosis, much less that she would have this particular kind of cancer.
Faye underwent what she refers to as “the mother of all surgeries”, HIPEC, during which 8 of her organs were removed and heated chemotherapy applied directly inside her abdomen, among other procedures performed. She was declared NED (no evidence of disease) afterwards.
However, Faye is not out of the woods yet. Her recovery has been slow and has had its ups and downs. Moreover, she still does have a long way to go; she will need to undergo scans for the next 20 years, with her first scan this coming November.
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)
… 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.”
Symptoms: Severe bloating, bad stomachache, elevated CA 125 and tumor markers Treatments: Hyperthermic intraperitoneal chemotherapy with mitomycin C (HIPEC) surgery; removal of spleen, gallbladder, appendix, ovaries, uterus, womb, fallopian tubes, belly button
Symptom: Severe abdominal pain Treatments: Surgery (right hemisphere colectomy, appendectomy, HIPEC), chemotherapy (adjuvant chemo in 2014; after recurrence, 6 rounds of oxaliplatin with bevacizumab & capecitabine)
Interviewed by: Alexis Moberger Edited by: Chris Sanchez
Viola is a survivor of Stage 4 stomach cancer.
Viola’s cancer diagnosis came as quite an unwelcome surprise, because she is athletic and active; has practically no family history of cancer, save for a grandfather who got lung cancer from chain-smoking; and aside from a couple of symptoms, initial tests including a CT scan, blood testing and biopsy came up with nothing.
Nevertheless, further testing just a few months after that healthy diagnosis revealed Stage 4 stomach cancer that had started to spread outside of her stomach.
A shaken Viola began to undergo the aggressive chemotherapy regimen known as FLOT, but also started to speak up for herself. Her doctor told her that should FLOT be successful, it would open the door to surgical removal of her stomach. But this was unacceptable to Viola, since doing so would not do anything about the other afflicted parts of her body.
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.
Cancer is just an opportunity to prove how strong you are.
Introduction
My name is Viola. I’m Polish, but I’ve been living in Australia for 20 years.
I turn 51 in April this year. I have two kids, 14 and 17.
I like sports, I used to run a lot, I love swimming. I just enjoy being outside, I love nature.
I love talking to people. I just get a lot of energy being around people.
Pre-diagnosis
Before I got diagnosed with cancer, I was thinking that I might die from a different disease, but not from cancer, because there’s practically no cancer story in my family.
Only my grandfather had cancer, many, many years ago–he died from lung cancer, but he got it because he smoked a lot.
This means that my cancer was a big surprise for all of us.
My own story goes back a little. Five years before I got diagnosed, I knew something was wrong with me because I was very tired and I could feel a little pain.
But when I went to the doctor and they checked my blood, did a CT scan, and all that, there was nothing. And because I was so active, too, they really didn’t think that something was going on.
All of a sudden, in February 2020–when the pandemic started–my husband, daughter and son all got sick with influenza. And one day, I went to work and suddenly felt a sharp pain. And ever since then, I started to feel weak, and got weaker and weaker. But I thought it was just influenza, too.
My family was fine after 2 or 3 or 2 weeks. But I was still very, very weak. And I kept going to the doctor for checkups, two or three times. But he still couldn’t find anything wrong with me.
Diagnosis
In April, we did the blood tests and CT scan, and the doctor couldn’t see anything. And he said, okay, let’s have you do a gastroscopy or endoscopy.
But he then said, oh, since there’s a pandemic, I don’t know if you can have these tests. But I put my foot down, and said, I have to give it a go, you know?
I got a referral for a different doctor, and I said, OK, if I’m going to have to pay for these visits, let’s get the best doctor we can get.
So I did go to see that new doctor and filled him in. He noticed that I had lost weight–all of a sudden, I had lost 5 kilos. But I personally didn’t notice, because I’ve always been pretty skinny, and I’ve been running quite a lot, too.
The doctor had me do an endoscopy. I went to see him on a Friday and we did it on Monday. And once again, they couldn’t find anything. But this time, this new doctor said, let’s do another one in a couple days, because I don’t have a good feeling about it. So we did another one after three days.
The doctor didn’t have results yet, but he called me and said–I think it’s cancer. Of course I said, no, it’s not possible, in fact, I already feel much better.
And two days after that is when he called me with the confirmation that it really was cancer. Stomach cancer, stage 4.
And as it turns out, it was hidden in my stomach wall, which is why it didn’t show up easily or right away. And the other thing was the cancer had spread a little bit outside. I think it’s called peritoneal.
Reaction to the Diagnosis
It was from nothing to a big thing. In April 2020, I was a healthy girl; on June 1 of the same year, I was diagnosed with stage 4 stomach cancer.
So this is how sneaky cancer is. Stomach cancer just takes you by surprise. And it’s so ironic because I was always laughing at my husband, saying, hey, I can eat anything, and he would go, oh, I can’t eat this because my stomach hurts.
And moreover, I didn’t have any symptoms like blood in a stool, or anything like that.
So yeah, it was a big, big, big shock to me. I didn’t know what to think. Of course I thought I would die. Just the word cancer freaks you out.
My friends were incredulous. They said, your blood results, they didn’t show anything. The CT scans from April didn’t show anything. The first biopsy didn’t show anything. Is it really cancer?
But it was just hidden in my stomach wall. That’s why I never had constant pain. Because if you have stomach cancer and if you have a lump, wherever you eat, it hurts.
Treatment
Stomach cancer is aggressive cancer, so we had to move right away, and the first treatment I was given was aggressive too.
So the surgeon I was going to said, okay, because you’re young–I was 47 at the time–let’s do the chemo, we’ll put you on FLOT.
FLOT
So they put me on FLOT, and like I said, it was very aggressive chemo. It’s not for everyone.
The doctors put people on FLOT if they have hope that their patients can undergo the surgery and regimen. If not, I would have been put on palliative chemo instead.
The doctor wrote a report and in it he said, if the chemotherapy works, we can consider an operation to remove the stomach. When I saw the word “consider”, I freaked out. I could feel that my life was in his hands. And I’m not the kind of person who’s okay when someone else decides about my life.
What about the rest of the cancer that’s outside the stomach, I asked him? He said, well, this is what I can do. But I put my foot down and said, this is not enough. You can’t just leave the rest of the cancer in my body.
So I talked to my mom, who lives back in Poland, and we started searching for alternatives. And she came across a method called HIPEC.
HIPEC
Now, HIPEC is something they don’t recommend for stomach cancer patients. It’s more for people with colon cancer, or ovarian cancer. But we still wanted to give it a shot.
So I started searching here in Australia and found one doctor who could administer it, but I could feel that she didn’t feel confident about HIPEC for me. So I kept on searching.
I found another doctor who actually started HIPEC in Australia, and who was supposedly the best in the country. He had been doing this for such a long time and was very experienced. I think he was about 70 years old at the time already.
I wanted to make an appointment with him, but it wasn’t that straightforward. I had to send all my CT scan results beforehand, and then his staff would have to see if I was qualified for it. So I was waiting for all my scan results to arrive–and praying and praying that he would accept me.
And all of a sudden, I got a phone call from the doctor’s secretary. She said, you’re clear to make an appointment, even if we haven’t received your CT scan results yet. So it was like a blessing from God.
So when I finally met him, he was like, OK, no problem, we can do it. And I said, really? It’s stage 4. He said, yeah, not a problem, we see how we go.
Out of curiosity, I asked, do you get a lot of stomach cancer patients? And he said, I actually don’t. Most of the time, it’s too late and there’s no chance. But with you, I can see a chance that HIPEC will work for you.
So they put me on what would eventually be 4 rounds of HIPEC chemo. It was tough, and not just the chemo itself. It was doubly tough for me, for my family, because I’m responsible for all the cooking and cleaning at home and all of that. And when I got sick my husband had to take over everything.
Also, being on chemo, not having appetite, and thinking about death was traumatizing. And people around me were in shock, too. Because we didn’t have that family history of cancer. And I was also pretty young when it started.
People didn’t know how to help. They were sending flowers and I said, I don’t need flowers, sorry, I need food. Some people just couldn’t get it. I don’t know, maybe I expected too much from people.
So I tried to eat and be strong for the next step, which was an operation. I remember that they really wanted to operate on me quickly. We can’t wait, they said–this is aggressive cancer. We have to do it quickly.
Surgery
So, in September 2020, they rescheduled all their operations just to fit me in, and then they performed the surgery.
Mine was a long operation, ten hours. They removed my stomach, ovaries, gallbladder, part of the small and large intestines. Honestly, I don’t know if the cancer spread to my gallbladder, but they just removed this just in case.
They told my husband that apparently my stomach was sitting or lying on my intestine. And if the stomach was full of cancer, then it could spread to the intestine. That’s why they removed as much as they could.
Chemotherapy
And after removing all the stuff, they performed the next part of HIPEC.
This is like a hot chemo, 42 degrees. So after they take all the organs out of you, they put in the hot chemotherapy, they close you.
And this is like in the washing machine, it’s just killing the cancer cells that are left after the cancerous parts are removed.
It should have taken just about one hour and a half, but I started bleeding after an hour, and they had to disconnect me. That’s why it took so long, ten hours. And then I went to intensive care.
… the secret of my success is that I was doing the stuff that people don’t want to do.
I’m alive because I was doing stuff that people don’t do.
Post-Procedure
They expected me to be in intensive care for 4 or 5 days.
Because this is very aggressive treatment, and only strong young people can be qualified for it. But, you know, I always had a lot of energy.
When I had the operation and woke up the next morning, I was strangely happy.
My first question was, did you even operate on me? And they said, yes. So I was happy already.
This is like when you go on holiday and then come back home; you still have this energy left over from the holiday.
After I woke up the next day in intensive care, I had all this good energy.
It was in the middle of the night and I was chatting away. The whole world was quiet and I was so active and talking because I was still on this healthy energy.
And when the doctor saw me, he said, oh, I’m pretty happy with the result. You look OK. So maybe we can move you to a normal ward straight away. In fact, they wanted to discharge me under 24 hours because I look pretty OK.
But I said, no way, not yet. I want to stay in intensive care first. I didn’t know if the people in the normal ward would know what to do with me.
Sure, I did have all that good positive energy afterwards. But recovery turned out to be hard. Because everything stopped inside my body. The intestines were not working. It was a big shock for my body. They did remove half of my organs, after all. I remember after the operation, after the HIPEC, they wanted me to go to the toilet by myself. They didn’t want to do anything that was not right with my body.
After 3 days, I got discharged. I went back home. I was healing. But I wanted to take the next round of chemo straight away. However, they said that I needed at least 2 months to recover, because it was after all quite a big shock for my body. Not just because of the operation but also because of all the chemotherapy that was pumped inside me.
I recovered at home, and I tried to be active while doing so–stuff that people don’t ordinarily think of doing while in recovery. I got myself to walk. I even jumped on the trampoline. Anything to keep my body moving. I slept a lot as well, of course.
But the secret of my success is that I was doing the stuff that people don’t want to do. I’m alive because I was doing stuff that people don’t do.
Second Operation
After this operation, I had to undergo a second operation in April 2021, because I had a problem with my intestines.
I was already skinny, on chemotherapy, and I lost a lot of weight. Maybe I’m mentally strong, and my body was strong too.
But I couldn’t keep the food in my body; the toilet became my home. Honestly, I could sleep there. It was just a nightmare.
So my weight was only 38 kilos in April 2021. So, to fix me up, I had to have a second operation. They had to open me up again and see what’s going on.
Of course, it was a scary moment, honestly, because this was the time when I started vomiting a lot at the hospital.
And even my son said, I thought you are not coming back, because when you start vomiting, it means that your intestines are blocked, and if the intestines are blocked, you’re done for.
So I underwent a 6-hour operation to repair my intestines.
Afterwards, the doctor checked–and there was no sign of cancer.
Even at the hospital, I kept on doing the things that were working for me. I was pushing myself. I tried to walk and do different things. I meditated and prayed. I just refused to accept that I can die.
Stopping Chemotherapy and Being Cancer-Free
After the surgery, I stayed on chemo for over a year because my oncologist didn’t think that I was going to survive.
My oncologist, by the way, didn’t want me to do the operation. He said, people with stage 4 shouldn’t be operated on. But I retorted, I don’t need to talk to you–this is my life. Why should I put it in someone else’s hands?
I should also say that my surgeon and oncologist don’t get along. They don’t speak, because my oncologist doesn’t like my surgeon. But I’m really grateful for my surgeon, because he’s a great man with a big heart. He’s helped so many people the same way he helped me. So I continue to pray for his continued health.
In December 2021, I ended up stopping chemotherapy. This was a risky choice I had to make. I was losing weight again and my body wasn’t absorbing nutrients at all.
I was scared because chemo was saving me, it was keeping cancer away from me. But then I went to another oncologist, who backed me up.
The oncologist said, you’re right, Viola, stop the chemo. Get stronger. If something comes back–hopefully nothing will, but just in case it does–your body will be much stronger and will be better equipped to fight it off.
So I took his advice and stopped chemo. And since then, every 3 months I’ve had a CT scan and a check up.
So far, so good. No signs of cancer.
… don’t be scared, really, because people want to scare you.
Saying you have cancer and then you are just–bang, you’re done.
You’re not done.
Words of Advice
Because you live, people look at me and they said, oh, you’re fine, blah, blah, blah. Even my family, they don’t get it.
People said, well, you should go and live your life. But you can’t live your life if you could die.
My death was in front of my face. It’s changed me. It’s changed me a lot.
But honestly, I don’t care what other people think. You know, people, this is my life. This is my decision.
And I think I’m a big winner.
I don’t listen to anyone, honestly. Even to my family. The only person who supports me is my mom. But I’m strong. I’m very mentally strong. And I wish more people who are going through cancer will listen to themselves instead of other people. People who have never gone through this.
I only listen to people who have experienced what I went through. People who have never gone through this honestly don’t have a clue what they’re talking about.
I know, maybe I’m too straightforward, but this is me.
If someone can learn something from me, that will be great. Look, whatever happens next, I’m much stronger. And I have more knowledge.
When I got diagnosed for the first time, it was a big surprise. But now I know that cancer is just another sickness. This is about what you eat. It’s about your mindset. It’s everything. But don’t be scared, really, because people want to scare you. Saying you have cancer and then you are just–bang, you’re done. You’re not done.
Cancer is just an opportunity to prove how strong you are.
Symptoms: None; found during the evaluation process for kidney donation Treatments: Surgery (partial gastrectomy & nephrectomy), chemotherapy (oxaliplatin & capecitabine), radiation
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Initial Symptoms: Choking suddenly while eating and attempting to speak; neck and right shoulder pain; neck tightness; trouble swallowing certain food items Treatment: Surgery (subtotal gastrectomy, D1 lymphadenectomy, gastric bypass)...
