Survivors' Stories
Meet our inspiring PMP survivorsCourage in the face of cancer and of treatment is a common thread running through all our stories, even though they’re all very different. Read how appendix cancer and pseudomyxoma survivors have fought through stormy times and misdiagnoses, and yet somehow found an inner strength.
We thought it was nothing more than an ovarian cyst
My journey started in October 2013 (I was 53 years old), when I had an ultrasound to determine if I had gallstones or an issue with my gallbladder. The results showed a small cyst and mild fluid in my lower right abdomen area. It was decided that we would monitor the cyst and fluid and have an MRI in one year. We thought it was nothing more than an ovarian cyst. I had MRIs carried out in October 2015, April 2016 and October 2017, with all indicating no change in the cyst size, but the surrounding fluid was increasing ever so slightly. Throughout all of these tests, I was not having any real symptoms to indicate cancer or anything serious.
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The disease was actually growing out of my belly button!
I do an exercise class and I was having trouble keeping up and my belly was growing with no changes to my diet. In my head, I was thinking that was just signs of perimenopause and that was my new figure. Some women just have a muffin top at 44, right? I was also going to the restroom for frequent urination. I was under the care of a urologist for that at the time of my diagnosis.
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I was misdiagnosed by my first surgical oncologist
When someone new to the group posts, you very often see multiple members encourage them to seek an appendix cancer specialist. That was also the case when I found the support group after I was diagnosed in June of last year. I was actually misdiagnosed by my first surgical oncologist who thought it was ovarian cancer and told me that it was well behaved and that they would remove it and I would be fine…
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Jill’s Book Review
I was really positive about my recovery after the major operation. I took things really slowly and took good care of myself.
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Why you should see a PMP specialist
I can’t say it enough… are you dealing with a PMP specialist? If not, I would say you must.
They are the ones that have seen this stuff and the weird things it does. They can give better ideas as to what to do.
In my case, waiting seemed the best option at the time but with the specialist’s input, I chose to go ahead and now, even with the debt, the new body norms and everything, I am sooooo glad I followed his advice! He would have told me to watch and wait if in his experience there was a low risk. And I would have done it.
This Illness Sucks but I’m Embracing the Moment
Just over 18 months ago, I had a full hysterectomy because they thought I had ovarian cancer….
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You have to do research to find the right medical team that is experienced in treating PMP
I didn’t have any related symptoms before my diagnosis. I went to the urologist for some UTI treatment. The doctor (my hero) ordered a CT scan. That was the beginning of my journey. PMP is so rare and the right treatment is so important. You have to do research just to find the right medical team that is experienced in treating PMP. My wife and family, of course, were there for me.
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Even if your case is rare, do not give up…
Fertility treatment, ovarian cysts, miracles, hernias and crossed fingers.
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When you’re faced with life and death, you choose life
I was 35 and had only just embarked on what should have been the most exciting chapter of my life so far. I was living in Australia with my girlfriend Laura, and whilst working on making the most of the hospitality and weather.
But the care-free life we were just starting to enjoy wasn’t to last, and in a devastating turn of fortunes we were faced with a choice that no one should have to consider; life or death.
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Feeling proud
My 10-year-old son has recently been to pioneer week where he goes to his new secondary school for a week to experience life there. He was asked to write about someone who inspires them.
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I had flu-like symptoms and was diagnosed with PMP
Initially, I had flu-like symptoms with pain in all the joints in my body followed by bad abdominal pain that did not go away. I was admitted to Gosford Hospital on February 11th, 2014 as they couldn’t diagnose what was causing the severe discomfort I was having. After being in hospital for eight days, it was discovered that I had pseudomyxoma peritonei (PMP).
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Lisa takes part in a photoshoot
Following the Loose Women Body Stories campaign, Lisa took part in a photo shoot organised by The Sun newspaper. We caught up with her and talked to her about the shoot.
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I had cytoreduction and HIPEC and now I’ve climbed Mount Kilimanjaro!
My local hospital happens to be the centre in Israel for treating this disease and two of the surgeons working there have extensive experience in performing cytoreductive surgery and HIPEC. To those of you have undergone this procedure, I don’t need to say more. If you are still recovering or about to undergo it, I wish you excellent care, strength, patience, and a complete recovery.
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I had shortness of breath and my sides ached
I was experiencing shortness of breath and my sides ached when walking around, nothing specific. I had an ultrasound which showed a large tumor which was confirmed by MRI. I had surgery at my local hospital to remove a tumor the size of a football and my diagnosis of pseudomyxoma peritonei (PMP) was confirmed.
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I used to lie in bed with this constant nagging pain where my appendix was
When I was 14, I used to lie in bed with this constant nagging pain where my appendix was. Every night, I was convinced that this would be the night it would explode, but it never did. Roll on 25 years and innumerable investigations and potions for IBS, haemorrhoids etc, etc. Nothing ever changed this pain. So I ignored it and got on with life, which largely revolved around being a highly stressed staff nurse and lots of body-damaging fitness (ultra-marathons etc).
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My husband was told to go home and take acetaminophen
In April 2016, my husband, Donald, was suffering from bad night sweats and severe belly pain along with a fever. He went to the doctor in April 2016 and was told to take some acetaminophen (paracetamol) and go home. Less than two weeks later, it was so bad that Donald went to the Emergency Room.
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I was admitted to hospital with abdominal pain and operated on the next day
On March 1st 2016, I was admitted to hospital with abdominal pain and operated on the next day. The surgeon found a tumour in my appendix and mucin throughout my abdomen. My story is about what happened next, my surgery, coping with the stress and the positives that came out of it.
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My Olympic Victory
Four years ago, I had to give up my ticket to watch the London Olympics to go to a hospital appointment and be told I had PMP and had only ‘a few months’ if Basingstoke could not offer me CRS and HIPEC. Now I’m in Rio!
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Being sick
The last year and a half has been a profound and unmooring experience, and one I turn over in my mind with gratitude, disbelief, and amazement.
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Shana raises awareness
Shana shared her story about appendix cancer on KVUE and had a blog post published to support it.
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Too young for cancer
It’s tough being only 20 years old and an appendix cancer patient at that. Mainly because no one expects or even wants to believe you could even end up developing cancer, and the worst culprits are medical professionals. True, the odds are so low it’s a waste of time to even bother, but that ‘waste of time’ could have cost me my life!
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It still doesn’t seem real, yet this wasn’t a bad dream
James and I know that our lives will never be what we once planned. Not being able to have children is still very hard for us to come to terms with but we know that it was necessary to improve my chance of long-term survival. We take each day as it comes and are thankful for the life that we are given the chance to live, not taking anything for granted.
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Don’t give up hope!
On February 2nd, 2011, my appendix burst and I had an operation in Burton-on-Trent. I was 36. On March 7th, I received a letter from the hospital saying I’d missed a follow-up appointment for a suspected case of PMP. I hadn’t received the original letter and just what was PMP? I looked it up on the internet.
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I was convinced I had gallstones but it wasn’t gallstones
After an elderly relative was admitted to hospital with gallstones and, after researching her symptoms online, I was convinced I had the same problem. I pestered my GP to refer me for an ultrasound which eventually showed I had no gallstones, but “a fair amount” of fluid around my liver.
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I knew that I didn’t have textbook appendicitis but does anyone really have “textbook appendicitis”?
I cried as I was driving home from my doctor’s appointment. Then I picked myself up when I got home and googled “low grade mucinous appendiceal neoplasm” because I needed to know everything about this new enemy. That’s when I found the term pseudomyxoma peritonei.
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My PMP journey and why I’m doing my bit to raise awareness
I was diagnosed with PMP aged 32, after many months of stomach pains, bloating, constipation and irregular periods. After numerous trips to my GP, which led to an ultrasound and eventually a CT scan, I was told I had a nine centimetre tumour on my appendix which had burst and leaked cancerous mucin into my abdominal cavity.
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Putting on your happy face every day to those you love, trying not to worry them, has been exhausting
It is not in my nature to reveal all of the everyday trials and tribulations to every person I meet. I do believe that this has been the hardest thing I have ever done in my life, and to try and remain calm, cool and collected in the face of such an obstacle, has been exhausting, to say the least.
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Emily shared her PMP story with the BBC
A Hampshire woman who contracted a rare form of cancer has undergone surgery which involved the removal of a number of her organs, before she was blasted with chemotherapy. Emily had a rare form of cancer – the same condition that killed, Hollywood star, Audrey Hepburn.
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I didn’t have endometriosis, I had PMP
My story began a few months after I got married. My first symptom was the sudden onset of intense pain while I was at work one day. After a few hours, the pain subsided but I decided to make an appointment with my family doctor a few days later.
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I was told it looked like ovarian cancer… but it wasn’t
After my diagnosis with metastatic, well-differentiated mucinous adenocarcinoma of the appendix, my doctor said I have a 72% chance of being alive in 10 years; those are great odds for a cancer patient. One of my doctors guessed that I might have had six months without treatment. I’m happy that I was a candidate for surgery and HIPEC. Without it, I’d probably be dead right now.
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Receiving a diagnosis
My original symptom was an ‘irritated‘ bladder — it is difficult to describe but the closest I can come up with it that it felt like it was vibrating all the time. In March 2010, after several months of bladder discomfort and many trips to my GP, I was referred to the gynae-urinary clinic at my local University hospital with suspected bladder prolapse.
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My baby and obstetrician saved my life!
I had caesarean section on July 12th. This took 35 min and I was delivered of a beautiful, healthy, big baby boy, weighing in at 3820 grams/8.6 pounds. During my normal c-section, I had a further operation, an ’emergency appendectomy’. I had two masses removed and further testing showed they were both cancerous tumours and I was diagnosed with pseudomyxoma peritonei (PMP). I was told I would have to have further treatment in the future. The tumours showed two different types of cancer, carcinoid & appendiceal mucinous tumours.
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My PMP was picked up on an ultrasound scan
CT scans showing the cyst getting bigger with each scan and a final scan showing fluid in my pelvis, the doctors thought I had a burst cyst. An MRI scan showed the fluid still there after 2 months where it should have been absorbed by then should it have been a cyst.
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I thought I had a kidney infection
I feel great. I was worried about catching colds and things without my spleen but I’m as healthy as I was before. My son and husband have caught colds but I have not which is normal for us. I have caught a sickness bug from my son since surgery but I recovered quickly with no problems and again compared to what I’ve been through, it felt like nothing.
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Marilyn’s Story
When my doctor told me what he had discovered during surgery for a suspected ovarian tumour, I could barely pronounce the words let alone understand what it might mean for me.
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The doctor suspected that I had kidney stones
I was 59 years old when I was diagnosed with pseudomyxoma peritonei (PMP) and it took me eight months to get a diagnosis. My scan showed a “fog” or liquid around my liver and my spleen.
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Janesa’s journey with pseudomyxoma peritonei
The most common question I get asked is “How did you know something was wrong?”. So, here’s the story.
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An ultrasound showed cystic masses in both ovaries
My initial symptom was a tiny pain (feel like pins and needles) from my lower abdomen, it only last a couple of seconds, it came and went. I was a healthy, active mum filled with energy and a busy lifestyle.
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My doctor thought I might have a hernia and sent me for an ultrasound
For well over a year, I noticed my belly steadily getting bigger though I didn’t seem to be eating any more than normal. I of course tried dieting a few times but when I didn’t lose weight I gave up pretty quickly!
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Megan’s Story
On November 30, 2009 Megan went to Northside Hospital, Cherokee, with severe abdominal pain. After hours of testing and exams, she was admitted to do further testing. Megan’s abdomen was swollen to the point that the doctors, had they already not tested for pregnancy, said that she looked to be about five to six months pregnant.Megan was diagnosed as having Stage 3c Ovarian Cancer. The tumors were large mucinous tumors. Megan was referred to Dr. Joseph Boveri, a gynaecological oncologist in Atlanta, to follow-up and to get this tumor removed.
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My stomach looked really distended
When we got home from a family holiday and I looked at the photos, my stomach looked really distended. After noticing this, it just seemed to get worse and felt quite hard. I went to see the Doctor and he said I probably had wind or had just put on weight.
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The doctor was more astonished with the size of my belly than with the hernia
He asked if I drank a lot, thinking it was a liver problem causing accumulation of fluid in the abdomen. He requested an ultrasound, which revealed the presence of intense ascites. There seemed no other abnormalities.
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I was devastated at first as I am a single parent
Before I was diagnosed, I suffered from abdominal pain and tiredness. I felt full quickly after only eating small amounts. I saw various doctors who gave me a diagnosis between appendix, ovaries and bowel but no firm diagnosis.
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The Waiting is Almost Over!
It’s just two days until my operation but how did I get to this point?
The call came out of the blue. When my gynae consultant’s secretary called, I thought she wanted to say the appointment I had changed was inconvenient. But no, she wanted to ask me to come back in! Even then I wasn’t particularly worried, didn’t really have a clue why…
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How shall I tell my children that I have appendix cancer?
Looking back, I think we were trying to protect our children from the reality of the disease. Initially, when we discussed my diagnosis, we used terms like death, dying, chemo and cancer. We thought we spun this into a very positive approach, but our “method” may have given our children a confusing and unrealistic message about survival instead.
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I had no outward sign that this mass was inside my abdomen
Following an abnormal smear, I was referred to my local gynaecological oncology centre where an ultrasound scan revealed a complex mass believed to be ovarian in nature.
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Surviving with PMP
PMP isn’t always the immediate death sentence some expect — with top quality surgery it can be overcome, with a decent life expectancy afterwards.
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My waist kept expanding over a period of seven months
I was working as a daybaker and would come home and fall asleep on the sofa soon after I got home. I was exhausted and, despite exercising regularly and when my mother asked me if I was pregnant I began to feel unsettled. I also experienced some back pain that felt like my muscles were torn apart (like Velcro).
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Kay’s Story
Kay’s PMP was discovered during a proctocolectomy.
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I felt uneasy, something was wrong but I couldn’t pin anything down
I had just had blood tests for my quickly approaching 40th but nothing had reared its head. Was I drinking too many coke zeros, at one a day? Time to give them up. Was I lactose intolerant, coeliacs? Nothing like self-diagnosis!
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My story started when I was pregnant
Lauren was diagnosed with PMP following her 20-week prenatal ultrasound.
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I felt something wasn’t right in my abdomen
I went to the doctor as I could feel a swelling and, yes, the doctor could feel it too. After taking pregnancy test under the doctor’s instruction, I was sent for an ultrasound.
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Just when your life is going well, things are sent to mix it all up
Ruth was ignored by her GP until she asked to be referred to a gynaecologist.
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The radiologist was rather puzzled by ‘a fluid in my stomach’
In the summer of 2008, after having pains in my side, which turned out to be gallstones, and not feeling at all well I went to see my doctor who sent me to Bristol General Hospital to have an ultrasound scan. During the examination, the radiologist was rather puzzled by, as she said ‘a fluid in my stomach’.
read moreThe stories contained in these pages contain the views and opinions of the individuals who have written them and do not necessarily reflect the views of Pseudomyxoma Survivor.
Are you an appendix cancer or pseudomyxoma peritonei survivor?
We'd love to read your story
Many people find it helps to talk about their experiences. This can be helpful for others who are going through the same. We always respect your privacy — there is no expectation for you to provide a story to fully participate in our support groups or buddy scheme nor to publicly share personal details such as your name or a photograph. We are happy to support however much, or how little, you want to share with others.
If you would like to share your story with us and with other survivors, we’d love you to get in touch with us!