Whoohoooo, finally, I have discovered the Rare Cancer Support Alliance (www.rare-cancer.org) which not only lists details about a malignant phyllodes tumour but has forums where other ladies have posted and answered queries, given their stories about their journey, what worked, what didn’t work, what they were advised, shared their histopathology reports etc etc.
I posted an introduction to me and my predicament whilst also looking through the various postings and forums for other information. I also researched previous postings where I note that there are some posts that refer to similar pain being due to surgery and the nerve endings settling down.
I can’t explain how relieved I am to have found somewhere that has honest information and balanced views about this type of tumour.
I also found reference to a Barth report that’s been recently published… Barth Report which although I don’t have access to the whole report has given me food for thought regarding mastectomy, metastasing and radiationtherapy. Finally I feel that I’m getting a better picture.