Survivors' Stories

Meet our inspiring PMP survivors

Courage 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.

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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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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Too young for cancer

It’s tough being only 20 years old and a 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

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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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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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 Ervine 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

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!

My name is Stacey, I’m 31 years old and a mother of five from the Gold Coast in Australia. I can literally say 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. My bub wasn’t planned but he sure is our miracle bub. Dr Dunn, my obstetrician, said I was very lucky to have a c-section as it probably saved my life. It is most likely that the tumours had been there for years. Dr Dunn went far beyond his duties, I’m forever grateful for what he did as it is a rare cancer which goes unnoticed and was only discovered by accident. Honestly, he was baffled as there were no symptoms whatsoever. I saw the specialist Dr Markey, whom I saw on July 18th, referred me to another specialist in Brisbane. In his letter, he requested that I had a partial bowel removal and internal chemotherapy to stop further spread of the disease. I then saw Dr Barbour who then referred me to Dr Lutton, at the Public Hospital. The assistant at his office called me to make the appointment and I... read more

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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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. 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. On December 11, 2009 at 2:33pm, Megan underwent a six and a half hour debulking surgery at St. Joseph’s Hospital which included removal of the tumors, appendix, omentum, complete hysterectomy and exploratory surgery on her bowels and other organs to confirm if the cancer had spread to those as well. Her incision was from her right hip to left hip. It took 57 staples to close the incision. Dr. Boveri came out after the surgery and explained to the family that it was cancer, however, depending on what the pathology reports revealed, that he thought the primary cancer started out as appendix cancer… On January 10, 2009, Megan went back to St. Josephs to have a port implanted for ease of use during chemo.The pathology reports finally came back and concluded that indeed it was not Ovarian Cancer, but Stage 4b appendix cancer with pseudomyxoma... read more

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 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… The consultant sat in his chair and advised me that my histology after the hysterectomy had shown a borderline malignancy. I relaxed in the chair… borderline… well, that didn’t sound too serious, did it? The consultant said he had seen this tumour before but much worse than mine so it all seemed very positive. He gave me the name pseudomxyoma peritonei (PMP) and told me he would refer me to a general surgeon. Well, I came home and went straight on the internet. My husband wasn’t interested at all in checking it out but I read everything I could find! As I read, I got more and more alarmed. This didn’t sound very borderline to me, more like a full-blown tumour!… and the treatment! Very scary, I understand why patients call it MOAS (mother of all surgeries) but on the other hand I didn’t fancy the watch and wait scenario, not an impatient person like me!! The consultant had said it was one in a million and my husband had said he always knew I was! I’m never lucky on the lottery so how come I was unlucky enough to get this? Why me? I had read so much about PMP that I knew there... read more

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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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’.

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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!

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