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Double mastectomy and subsequent testing

2 REPLIES 2

Re: Double mastectomy and subsequent testing

Hi Baz
Thank you for your reply. It’s interesting to hear about the PET/CT scan possibility and I will try to read up on that so I’m better informed before my oncologist appointment next month. No one at the hospital has mentioned that as an option, so maybe it’s not offered around here. But it does seem to be the only test, apart from self examination. Hoping someone else might chip in with some other possibilities!
Hope your operation in March goes smoothly - and thank you for your help. x

Re: Double mastectomy and subsequent testing

Hi there, I only had a single mastectomy so when I have my yearly mammo it’s only done on the remaining Breast. The site of my mastectomy isn’t specifically tested. My mastectomy was 2,5 yrs ago but
I haven’t had recon yet. My scar sometimes feels sore and hurts. I get regular check ups with my Breast surgeon who feels and checks over the whole area (feels for lumps, and swollen lymph nodes in my collarbone and neck etc). I had extensive radio and some of the pain is due to the radiotherapy.
As well as all that I had a full PET/CT scan 1.5 yrs after surgery (1 yr after chemo ended). I had another PET/CT scan a year later st my 2 yr anniversary of finishing chemo. I think that is the end of scheduled scans and in future I will only be scanned of a problem presents itself but I see my oncologist every 6 months. My next appt is in June so I will ask him them about my scan schedule. I take Letrozole but also have 6 monthly zometa infusions which have been shown to help prevent sevondaries to the bone. I’ve also got my recon DIEP operation in March which will involve another CT scan (for blood flow).
Your oncologist should be able to advise you about their policy of follow up scans as it seems to vary depending on diagnosis and hospital. I hope that helps
Baz x

Double mastectomy and subsequent testing

Hello
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 hear 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