Hi everyone,
Not sure how I managed to miss this thread - but I too had DCIS and was a bit confused with the different schools of thought - particularly that if it is not considered a cancer, then why is it treated it as if it was. - i.e. surgery.
Anyway, I've had two lumpectomies, then a mastectomy/immediate reconstruction - and I made the decision to have both breasts removed as I didn't want to risk the other breast developing DCIS in the future (dense breast tissue, fibrocystic changes, matching pair etc etc). It's ironic that one of the maIn reasons why a mastectomy is performed is that cosmetically if more breast tissue were to be removed, the result would not be great - although of course my reconstructed breasts are nowhere as good as the originals so that's a contradiction. In my case, there was more hi-grade papilliary tumor found (110 mm all up) so if I'd had a third lumpectomy only, that breast would have been a lot smaller and probably disfigured also.
I've also been told that hormone receptors aren't generally tested for DCIS as it's not necessary for on-going treatment. Luckily I questioned this as it has now become necessary - but that's another story.
I would agree that everyone's situation is different - different Grade, tumor size, type of reconstruction etc, so that just makes it even more difficult when comparing experiences and decisions need to be made quickly.
Best of luck to all. Linda
