ADH now LCIS, ALH after lumpectomy

MsMonster

I just got my final pathology after my lumpectomy. After my 2nd biopsy i was diagnosed with ADH. That pushed me to surgery. Final lumpectomy pathology is classic, focal, low grade LCIS, ALH, FEA and PASH. All benign borders. Nothing remarkable in the breast that was reduced for symmetry.

I was told surveillance only and I’m fine with that.

I’m just wondering, is this a better, worse or just different diagnosis? Honestly I was busy crying from the release of the anxiety of knowing that I didn’t really ask.

leaf

I don't think you can say. There is too much that is unknown about LCIS, ALH and ADH. I have classic LCIS, ALH and DH (which does not cause the increased breast cancer risk of ADH.)

In different models and going to different practitioners, I have been given estimates of my breast cancer risk as low as 'less than 12%' (which is less than the average woman in the USA, from a tertiary breast cancer center!) to as high as 85% (15 years ago if I didn't take tamoxifen in a model that has NOT been peer reviewed.) Even if you cite studies that show that the risk of a group with all your risk factors is X, that is DIFFERENT than the risk of you, as an individual. For example, the Gail model (which neither you nor I qualify for because we have LCIS), they found the predictive value of the Gail model was shockingly low. https://academic.oup.com/jnci/article/98/23/1673/2... . If the Gail model is that bad for the 'average' woman, then just guess how well they know your breast cancer risk. The correct answer is : not very much at all.

LCIS and ALH are seen in the lobules, and ADH is found in the ducts. All 3 of them are not as risky as DCIS or invasive breast cancer. Some people choose surveillance, some people choose surveillance plus antihormonals, and others choose prophylactic mastectomies. The only choice I would not recommend would be to do nothing at all (in other words, not have surgery and not have any surveillance, unless you also have some other condition that will kill you within, say, 10 or 15 years.)

Probably on average, if I really had to guess, probably less than half of people with LCIS will go on to get DCIS or invasive breast cancer. That's a lot better than it could be. I've had at least 3 breast excisions (I've lost count) and so many biopsies I've definitely lost count, and I still have nothing worse than LCIS, ALH and ductal hyperplasia.

MsMonster

definitely had the surgery — that’s how I hit final diagnosis. Was offered nothing further than surveillance so I’m just going with that.

leaf

Great choice!

I apologize if I caused offense. I should have clarified what I meant - Either keep on being monitored as your docs recommend (which you are doing), continued monitoring + antihormonals, or prophylactic mastectomies, unless, goodness forbid, you have some other condition that will kill you in 10 or 15 years (in the very unlikely event such as you are already 105 years old or have an incurable condition that will kill you by then.)

MsMonster

I wasn’t offended.