Thanks for your reply and suggestion. I've had a read through the information about people who are happy to have email conversations - I don't feel ready for phone calls just yet. There's one woman whose circumstances seem a bit similar so I will get in touch with her. It does seem tricky to find people who have been through the same experience, so hopefully this will help. Thank you very much for pointing me in this direction.
Hello I’m reposting here, in the hope of reaching ladies who’ve had double mastectomies, and who might share their experience of subsequent testing. I’m finding very little information anywhere. Here’s my post, which was possibly not on the right thread previously: ‘I’m trying to get in touch with other people who have had double mastectomies, like myself, to try to find out what tests might have been offered for the future. I know there’s lots of anxiety about yearly mammograms - but even that check isn’t an option for me. All I can find out from nurses is that I have to be ‘breast aware’ (!) and report any changes. At the moment - 4 months post surgery - there are frequent changes in hardness, swelling, tightness, lumpiness. So that doesn’t seem straightforward. I’d be interested to hear how others have managed, and if any other tests are on offer around the country. I’m hoping to gather more information before my oncologist review next month. Any advice would be much appreciated. Thanks all! x’