I’ve just been given the go ahead for a mastectomy following completion of chemotherapy, and now I’m after a little advice…
Having weighed up the pros and cons and thought in great depth about my lifestyle and expectations, I’m really not keen on having a reconstruction, or an implant, or a future additional surgery to reduce the other side. I might sound fussy but I also don’t want to be lopsided and have to worry about a prosthesis.
I’ve therefore been looking into my rights to have a double mastectomy but can’t find any information. Does anyone know if I have any rights? (I don’t have the BRCA gene)
you can argue for it from a symmettry point of view, and they are supposed to listen. It’s a much cheaper operation to go flat bilaterally than to have one reconstruction, but for some reason it is more difficult to get them to agree to a double mastectomy. There’s a facebook group called flatfriends for people without reconstruction, several people on there have fought and eventually got a second mastectomy. Often they have to see a psych first. Don’t argue for it from a risk reduction point of view, they don;t accept that as a valid reason.
I’m having a mastectomy after my chemo and knowing myself and researching everything I want to request a bilateral mastectomy. I’m seeing my surgeon on Wednesday and I hope I can convey why I want this without getting shot down. I know he’s keen on a flap reconstruction so I’m not sure how receptive he’ll be to my thoughts.
You don’t sound fussy at all. I had a mastectomy with no reconstruction in November 2017 and was unaware at that time that you could have the other breast removed for symmetry on the NHS. It was my surgeon that originally mentioned it on the morning of my operation, however it has still taken a while to get them to agree and I am now scheduled for surgery next month. I get the impression that they just want you to be sure that you are making the right decision, as each time I asked I was told to go away and think about it, although I have not been referred for psychiatric evaluation, just the BN telling me my body shape would be different and that my stomach would show more. I do have a family history of breast cancer but it is insufficient for genetic screening so they have agreed purely for symmetry.
I was hoping when the new NICE guidance (NG101) came out last year that it might mention breast symmetry for those women that chose not to have reconstruction. However it concentrates on offering reconstruction with one line stating that some women may prefer not to have breast reconstruction surgery.
Good Luck and stick to your guns if that is truly what you want, but be prepared that they may only operate on the one side initially.
Krysbe