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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’m sorry we found a cancer.” I was diagnosed with a LAMN

In August 2023, my life changed forever in many ways when I heard the words, “I’m sorry we found cancer”. I was diagnosed with LAMN.

Don’t let a cancer diagnosis mean waiting and delaying become habits

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.

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I’ve gone from 0km to 10km in just over 6 months!

I’ve gone from 0km to 10km in just over 6 months!

In 2015, I had cytoreductive surgery and HIPEC for pseudomxyoma peritonei. To thank Pseudomyxoma Survivor for all the support I was given and all the friends I have made through the charity, I’m doing the Southend 10K to raise funds for the charity. I would have been so alone and desperate without the charity and I cannot thank you enough x

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We thought it was nothing more than an ovarian cyst

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.

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The disease was actually growing out of my belly button!

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.

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MOAS – It’s not a race

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……..

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Jill’s Book Review

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.

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Why you should see a PMP specialist

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.

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I was diagnosed with an inflamed appendix

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.

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Feeling proud

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 cytoreduction and HIPEC and now I’ve climbed Mount Kilimanjaro!

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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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.

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!