In December, Susan and Angela have been asked to present at the EuroPMP International Workshop on pseudomyxoma peritonei. It is a privilege to be asked to present to this network of experts from many fields, including surgeons, pathologists, oncologists, radiologists, molecular biologists, bioinformaticians and allied health care professionals of which Angela is a participant. This network is funded by the European Cooperation in Science and Technology (COST).
We’ve been asked to talk about the role of patient support groups in pseudomyxoma peritonei so please let us know if there is anything you would like us to say.
Update March 9th, 2020: due to the current situation with Covid-19, the meeting has been rescheduled from March to December.
Any group where I live is likely to have 2 people max in it as I am so far away from Basingstoke or Manchester.
My GP is clueless and I fall between disciplines within my hospital. Although I had PMP I had full hysterectomy too. Guidance and support is piecemeal and nobody is confident with answers where I live. I’d love a support group near me, not just to help me but to help GPs and others who may Have to support someone with PMP. I have struggled with the isolation and loneliness that this cancer has left me with.
Fortunately I have sought alternative support who acknowledge the difficulty I face.
Being diagnosed with cancer is something none of us want. But being diagnosed with a rare cancer is a double whammy. People usually have some experience either personal or related to the more common cancers. What isolates those of us with a rare cancer is the lack of a known care pathway lack of understanding from the medics and family and friends. This is as terrifying if not more so than the cancer diagnosis itself. A random google search is scary and one can become lost down a rabbit hole of misinformation uncertainty and fear.
Finding a tribe of people who are on the same journey has been the most fundamental empowering part of this experience.
By finding a group who are at various stages of disease and different pathologies has been so important. The resources gathered over the years has enabled me to start to engage with and take ownership of my disease. The support and warmth of everyone has enabled me to have the confidence to communicate and feel part of my treating team. It’s empowered me to state what I need from my treatment and to feel listened and understood.
I have no idea what the outcome for my own set of variables will be. Through the access to people who have the same or similar diagnoses I feel far more optimistic about the future and that enables me to manage my own mental health and expectations such that I enter the fight like the badass I want to be!
(Diagnosed 4 months ago)
I am a 14 year survivor with four surgeries in two years. Having a rare cancer is a challenge for an in-person support group. Not enough patients in my area.
The one thing I wish we could acquire is a new name. “Pseudo” anything sounds fake or benign. How about just plain “peritonei myxoma”?
I worked in a hospital and had many nurses think it was not a real cancer because it started with pseudo. I have had a few PAs turn a deaf ear to this awful disease. I have stated this many times. Maybe one day someone will take me seriously about the name.
I am in California and my husband has been diagnosed with PI. We are struggling with which Dr and team and hospital will be the best for his chances of overcoming this disease.
Being diagnosed with such a rare cancer is terrifying. Any professionals who I turned to for advice had no knowledge of it at all. So I turned to Google which was equally as terrifying.
Petrified of what I had read, I decided to ring the Macmillan support line. Through no fault of their own, it took me an hour to get through. When I eventually did, there were no nurses available to speak to. A nurse rang me back the next day and admitted that she had heard of PMP, but had very limited knowledge. I felt I had nowhere to turn.
I eventually found the PMP survivors support group which has been amazing. There are a wealth of people at different stages of their illness, who have given me so much hope. Any little question I have had, somebody has managed to give me the answer to, through their own personal experience. The group has been invaluable for me.
My diagnosis came an incidental finding following a Gynae operation, my appendix looked abnormal. After 3 worrying months I finally got my DPAM/LAMN 2 diagnosis along with the decision I would require CRS/HIPEC. I joined various support groups at this time but couldn’t bring myself to read the comments until after my operation , (5 months after my big op). Looking back, I wish I had become more involved from the time of diagnosis as this would have been a great help. PMP diagnosis is a huge shock and made even worse because it is rare and few people have heard of it. The support groups give great comfort, you soon realise you are not alone, and not the only one to be scared. Any worries or questions can be posted, there is always someone offering kind reassurance and advice. We are all the same boat and support each other. I think you have to be a PMP patient or carer to fully comprehend the complexity of the condition, it’s reassuring to be able to communicate with people who understand. Most of us will be under surveillance for at least 10 years after diagnosis, it’s good to know that there is always support and point of reference available through the support groups. There are many physical demands post PMP diagnosis and onwards, the psychological demands are equally important, not fully supported by healthcare professionals but these support groups help a lot. I think at the time of diagnosis it would be helpful if patients could be guided towards groups such as Pseudomyxoma Survivor as well as Macmillan.
I am due to have PMP operation and am very worried about outcome. Can I do excercises and what is best diet after operation?
You can ask your medical team about exercise and diet as it can be quite individual depending on your operation. I would also recommend joining our support community and asking others what worked for them – Pseudomyxoma Survivor Community. Our community provides peer support fro pseudomyxoma pertionei and appendix cancers.