Anyone living with LCIS for 25+ years, no PBM, no cancer?

25 years ago would be about 1990. At that time, I think most of the LCIS women would have been advised to get bilateral mastectomies. (They didn't have enough information about the outcome of LCIS women who did NOT have bilateral mastectomies.) Pathologists were just starting to consider there may be various types of LCIS. I think that tamoxifen and other antihormonals had only been used in women with invasive breast cancer at that time. I think no one had done studies with anti-hormonals for high-risk women who had never had invasive breast cancer.

Yes it's quite scary isn't it - on the one hand LCIS isn't cancer so you could just forget about it. On the other hand no one really knows what is going to happen long term. I'm one year out from my LCIS diagnosis and I've opted for nothing other than annual surveillance. Granted that surveillance is at a specialist cancer hospital (I'm in the UK). I can't say I feel entirely comfortable but I don't see convincing justification, in my case, for anything else.

Hi Lea

My story is the other way round. I was diagnosed with LCIS 20 years ago after an irregular mammogram and two biopsies. But I was told it was not cancer and not to worry about it. So I didn't. My records stayed at the back of my medical file.

In January, I was diagnosed with early stage ductal carcinoma and DCIS. Only then did I remember that I had a copy of the path report from 20 years ago.

I wish I had known enough to monitor this more closely, but as someone on this forum kindly told me, I did have 20 worry free years without major surgery or side effects from meds.

We know more today about LCIS. It definitely increases the risk of BC in future. But I am not sure I would have done anything differently, other than seek out more frequent screening.

One day, soon I hope, there will be simple blood tests to detect very early cancers and this will help all of us.

Good luck with your decisions!