I have a malignant phyllodes tumour & will probably have to a mastectomy followed by radiotherapy. But the doctors say it’s not breast cancer. However, I’ve just had a letter from my GP commiserating with me for having cancer. I’m struggling to name what I have to myself let alone others. Immediate family are ok as there is enough space to explain but I don’t know what to say to colleagues without going into too much detail. To say I have breast cancer when I don’t feels wrong but it’s easier Phyllodes tumours are so rare no one has heard of them. And if mine is malignant then that’s cancer surely?
its bizarre to be worried about terminology when there is so much else to come to terms with but not being able to have a simple form of words to share makes me anxious when I need to explain why I will be out of action for a while.
Hi Corvo welcome to the forum and Im as confused as you are because what you have can be a form of breast cancer so Im not sure why they are saying its not?
I have inserted a link to the McMillan Information for you re Phyllodes tumours and you need only click on the link and it will take you straight to this.
https://www.macmillan.org.uk/cancer-information-and-support/breast-cancer/phyllodes-tumours
The other thing is I wondered if you wanted to join the Breast Cancer group and there may be others there who can give you more information than I have to hand and maybe clear up any misinformation for you as well. Again you need only click on the link and this will take you straight there and you can repost in there as well.
https://community.macmillan.org.uk/cancer_types/breast-cancer-forum
Best wishes for now.
gail
