As patients and caregivers ourselves, we have a pretty good idea how you feel right now
In shock. Angry. Upset. Surprised. Scared. Overwhelmed, You really aren’t alone. When you are diagnosed with a condition that most people have never heard of and don’t know how to pronounce, it’s all too easy to feel isolated. These feelings will pass. There is treatment available for most patients and many patients living decades after their diagnosis. Please be reassured that having a diagnosis means you should now have access to the right expert care team who understand your condition and can help.
When you or someone you care for are first diagnosed with pseudomyxoma peritonei or appendix cancer, we know that you will have lots of questions. These are not always easy to answer and each person’s experiences will be unique, but we’ve tried to consider some of the common issues that many patients will share. You’ll have lots of questions, we did. That’s why we’re here. Hopefully, many of the questions you may have are answered here on the website. If not, get in touch with us and we will point you in the right direction. There really is no such thing as a stupid question – what is important is that you have the information you can understand
As these diseases are so rare, we urge you to look for a specialist who treats pseudomyxoma peritonei and appendix cancers on a frequent and regular basis before you start any treatment. Our Specialists section of the website is there to help you with that. Before you go for your appointment, make sure that the specialist has access to your records and any blood tests or scans you already may have had done before your diagnosis. You may want to consult with more than one specialist but this will depend on where you live. It is not unusual to have to travel some distance for treatment as pseudomyxoma peritonei and appendix cancers really do need specialist care.
It’s important to remember you are still the same person you have always been. A diagnosis of pseudomyxoma peritonei may bring changes and uncertainties, but it doesn’t define who you are. You are much more than your condition.
Being newly diagnosed with pseudomyxoma peritonei can be overwhelming and scary, but it’s important to know that you’re not alone. This rare cancer of the appendix requires specialized treatment and care. Seeking out experienced medical professionals and connecting with our support groups can help you navigate this journey. Remember to take care of yourself and prioritize your mental and physical well-being. With the right treatment and support, this disease is manageable and it’s possible to live a fulfilling life with the right care and support.
Remember that you are not alone and there are resources and people who can help you through this journey. Our aim is to equip you with the information you need to actively take part in your care so you can feel confident in your care team and in your treatment choices. If you have any further questions, please get in touch.
Run down, tired, stomach started bloating around six years before I was diagnosed and I thought it was mid-life spread. I had a dull pain in my appendix area so I was booked in to have my appendix out out but I asked for a scan just to double check it wasn’t my ovaries. Luckily I did have that scan because that’s how pseudomyxoma peritonei (or PMP) was spotted. Looking back I had it for about eight years before diagnosis
pseudomyxoma peritonei survivor
How can we support you?
In our online communities, our one to one buddy scheme and more, we’re here for those affected by pseudomyxoma peritonei and appendix cancers.
What does that mean?
When you are newly diagnosed with pseudomyxoma peritonei and appendix cancers, it’s bewildering. Added to that, there are so many new words and terms to understand and even worse to try and remember. Our glossary can help.