One of the things I don’t often blog about in great detail is our patient-led Facebook group, “Phyllodes Support Group“. You will recall from the beginning of my journey (still don’t like that word but haven’t come up with a better one yet!) that I found myself feeling alone and isolated with a diagnosis of Phyllodes.
I remember the fear when I was told that there is no/little information available for patients; no completed clinical trials or reliable data; no ‘specialists’ in the World and a varying degree of myth and misunderstanding on the Internet.
Our Facebook group has now been ‘found’ by over 500 members and grows almost every day. We’re from around the World and have differing ‘success’ with medical teams knowing about Phyllodes, the treatment and outcomes. So our group, I believe, has been critical to each and every member. We share experiences, information and resources. We ‘hold each others hands’ at times of anxiety and worry. We have created a database of all the journals and papers ever written about Phyllodes. We run polls of our members to find out the age of diagnosis, the prevalence of benign, borderline or malignant and much more.
We also have a poll that asks members where in the World they are from. This poll has allowed us to be more specific with some information and support by sharing local ‘sarcoma protocols’ or similar.
There are 4 administrators/moderators of the group. We live in different parts of the US, Italy and me in the United Kingdom. For my part I try to befriend the members from the UK and share with them more local information that may be useful.
Today was no different. I’ve been speaking with a new member of the group who was dissatisfied with her local hospital. They had said they knew it was Phyllodes and how they were going to treat it – ‘watch and wait’ – despite it growing rapidly. It was suggested that she get a referral to the Royal Marsden for a second opinion.
This morning I met up with her and her husband at the RMH before their appointment. Inevitably there were a heap of questions they both had before their appointment (and ones they’d not wanted to ask in the group). I hope my company was of value and comfort to them both.
I know I would have loved to have found just one other person with Phyllodes in the UK that I could speak to when I was diagnosed.