Pseudomyxoma SurvivorThe support network for those affected by pseudomyxoma peritonei, appendix cancer and peritoneal surface malignancies
If you’ve found Pseudomyxoma Survivor, chances are you’ve been affected in some way by pseudomyxoma peritonei (PMP), appendix cancer or another peritoneal surface malignancy. We’re here to provide emotional support and practical advice, through an online community that’s proven to make a real difference.
We’re a patient and caregiver run organisation offering advice on managing symptoms and all aspects of living with this rare disease; we advocate for patients and more. As well as all this, we’re people you can share experiences with and share the laughter and the tears.
Together we’re stronger and can face anything.
A one to one, personal and confidential friend to supplement the support already given by your family, friends and doctors. Our Pseudomyxoma Buddies offer a sympathetic ear and insight from their own experience.
Stories from across the world
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…read more
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……..read more
Those of us affected by pseudomyxoma peritonei and appendix cancer are amongst the millions of people affected by rare diseases around the world. As a community, we face huge challenges each and every day. Can you imagine going to multiple doctors who cannot diagnose your condition? Or being told that you aren’t a candidate for the gold standard of treatment for your disease? Or realising available treatment is too expensive? Or finding out that there are no surgeons in your country that can treat you?read more
From patients and from caregivers
Being relatively new to the group, I just wanted to say how cool I think it is that we are from all over the world and yet we share and are brought together by something so life changing. It is something that bonds us together in a way that shared nationality or age or gender alone never could. I just wanted to let all of you know how much I value knowing you are out there and supporting each other.Linda
Life and its uncertainties are hard enough as a cancer patient but when your income is so low that you don’t have the money to travel to see a cancer specialist, the door of hope and a future for your life is closed to you. That’s what I was facing, but Pseudomyxoma Survivor gave me a financial grant which opened that door for me so I could travel to see my cancer specialist to get the treatment I desperately needed to save my life. They are lifesavers.R
When I was first diagnosed with an appendiceal tumour, I was terrified. All the information I found initially on the Internet talked about awful outcomes, local doctors knew less than I did, and suddenly I was being treated miles from home. I was very pessimistic about the future. When I found this website, suddenly things started looking more hopeful.Sarah
I found this website extremely useful with answering questions when I was first diagnosed with pseudomyxoma peritonei. I am almost a year post diagnosis and I could not of managed without the support, the answers, the love and hugs sent when you’re down. It’s an amazing site and the support group is full of lovely people.Pauline
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Specialists and surgeons
Our directory is updated with information provided by the specialists themselves and is constantly reviewed.