Can we start a thread on ADH (known as atypical ductal hyperplasia)? There may be one already existing, but without a lot of hunting around, it's not easy to locate and may not be recent.
I'm 51 and have (had) no risk for BC other than being a female - non smoker, no immediate BC in my family, I'm fit, I exercise, eat well, maintain healthy weight, breastfed babies - all of that. I feel like with every diagnostic test I endure, I keep squeezing through the skinny risk gates and have now landed with the ADH diagnosis (only 4% of women with atypical cells fit into the ADH group) and now I am at high risk for BC of some type, although DCIS is the more common association, I am also at risk for invasive.
My journey started June 28th, 2011, very typically with an (every 2 years) screening mammo, followed by diagnostic mammo for calc cluster (2mm of concern, but 9mm spread). US found multiple cysts, but no lesion associated with the calc cluster, so on to the stereotactic VA core needle biopsy. Results showed ADH and I'm scheduled for a meeting with the surgeon on Sept. 8th and this will proceed a further surgical biopsy - I'm thinking excisional, but I can't recall. I will get clarification on the 8th.
Here's the dilema - from my extensive research, this conditon is like a ticking time bomb. It's likely that I will endure future biopsies over the next 15 years as my risk just shot up 4-5 times that of unaffected (normal) women. Anytime some more suspicious calcs are seen on a mammo, then the only way to determine what they are is by biopsy. I will likely be on a short recall for follow up. This for me, is more of a mental disorder. I have small breasts to begin with, so there will definitely be constant reminders - scars and chunks missing. The reality of this diagnosis is that there will be more to come - so stay tuned.... a large grey area indeed. I totally understand why women would opt for a preventative double mast in this case.
Anyhow, that's some of my thoughts on this diagnosis. I want to open up discussion around this and share links to interesting articles. Oh, I know my chances are good that I'll never have anything more than what I have today, but still... like I mentioned, it's the mental aspect of this one - nothing concrete and always waiting for the other shoe to drop.