Stories
Meet our inspiring 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. Overcoming fear and uncertainty to face treatment requires immense courage and perseverance.
You are not alone in this journey. Many others have walked this path before you and found inner resources they never knew they had. By sharing their stories of misdiagnoses, difficult symptoms and times of struggle, these survivors hope to give you hope and empower you with the knowledge that healing is possible. Your own story – of resilience, determination and healing – has the potential to inspire and uplift others just beginning this difficult journey. If you would like to share, to help those newly diagnosed, please click here.
I was shocked by my pseudomyxoma peritonei diagnosis
Being diagnosed with pseudomyxoma peritonei (or PMP) came as a huge shock. It was discovered accidentally as my usual yearly bloods showed abnormalities.
Don’t let a cancer diagnosis mean waiting and delaying become habits
Following a major operation in September to remove my left ovary, a cyst, my appendix and litres of mucinous jelly from my abdomen, in November I received the horrible news that I definitely had cancer. We didn’t know which cancer, whether it was mucinous ovarian cancer or pseudomyxoma peritonei (or PMP). I was told we could wait several months for a final diagnosis.
In sickness and in health
On the 4th May 1974, we married in the beautiful Christchurch Priory which was then Hampshire and is now Dorset, to have and to hold from this day forward. I didn’t realise how important the words in our vows “in sickness and in health” were at the time.
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 never thought it would lead to a diagnosis of Mucinous Appendiceal Adenocarcinoma.
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 with pseudomyxoma peritonei or PMP.
I was misdiagnosed by my first surgical oncologist
The recommendations from the people in the support group are because they care. The decisions we make are literally life and death.
MOAS – It’s not a race
Take your time, there’s no rush, go at your own pace and don’t feel pressured to be at a certain stage, just because someone else is. You’ll get there, in your own time, be happy still to be breathing and above ground……..
Jill’s Book Review
I was really positive about my recovery after the major operation for pseudomyxoma peritonei (PMP). I took things really slowly and took good care of myself.
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….
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.
Even if your case is rare, do not give up…
Fertility treatment, ovarian cysts, miracles, hernias and crossed fingers.
I was diagnosed with an inflamed appendix
Before I was diagnosed, I experienced increased abdominal size and piercing pain which was diagnosed initially with an inflamed appendix. It took about four months and another doctor for me to get the correct diagnosis at the end of January 2014.
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.
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.
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 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.
I had shortness of breath and my sides ached
I had an ultrasound which showed a large tumour which was confirmed by MRI. I had surgery at my local hospital to remove a tumour the size of a football and my diagnosis of pseudomyxoma peritonei (PMP) was confirmed.
The patient stories shared on this website are personal accounts of individuals who have been affected by pseudomyxoma peritonei (PMP), appendix cancer, or related rare peritoneal surface malignancy (PSM). These stories are not intended to provide medical advice, diagnosis or treatment. Every person’s medical situation is unique, and what works for one person may not work for another. The stories shared on this website should not be used as a substitute for professional medical advice, and readers should always consult with a qualified healthcare provider regarding any medical concerns or questions. The views and opinions expressed in the patient stories are those of the individuals and do not necessarily reflect the views of Pseudomyxoma Survivor or its members.