To all of you pre-menopausal woman with ALH

I am __NOT__ a statistician. I would think they may be very helpful in this situation. I am a postmenopausal woman with both LCIS and ALH, and a weak family history.

In order to make decisions for ourselves, we really want to know 'What is MY risk for breast cancer?' Since my risk for breast cancer may be different than any other group I am thrown in with (e.g. women with LCIS, women with ALH, women who started their menstrual period at age X, women who didn't breastfeed, etc.) Since I can only make decisions about myself, my aim is to estimate risk for ME, not risk for a group I may belong to.

I can point you to this article. http://jnci.oxfordjournals.org/content/98/23/1673.... It points out the vast difference between estimating breast cancer risk in a large group of women, and the risk of an individual woman. It looked at the Gail model, which is probably the most used breast cancer risk model, at least for women without a significant family history of breast/ovarian cancer. The Gail model automatically excludes anyone with LCIS.

It found the accuracy of the Gail model, with or without additional risk factors such as breast density, etc, was very poor FOR INDIVIDUAL WOMEN. It separated the population into two groups: a) the women who ended up getting breast cancer, and b) those that ended up not getting breast cancer. They selected one random woman from each group, forming a pair. It looked at the risk of each pair of women. 'In other words, for 59% of the randomly selected pairs of women, the risk estimated for the woman who was diagnosed with breast cancer was higher than the risk estimated for the woman who was not. Unfortunately, for 41% of the pairs of women, the woman with breast cancer received a lower risk estimate than her cancer-free counterpart. Thus, for any given woman, the two models were better at prediction than a coin toss—but not by much.' (emphasis mine).

So if they have this much trouble calculating the risk of an average woman in the USA, just think of how many problems they have for calculating the risk of an individual woman with ALH, which a member of a much smaller group of women with ALH, versus the risk of an individual average woman in the USA, a member of a much larger group.

My clinicians tossed my lifetime breast cancer risk numbers at me. (I got various figures such as 30%, 40%, and from one clinician, 'somewhere between 10% and 60%, but probably closer to 10% than 60%. If you want a better answer, go to the journals.') Those numbers may or may not be true. But to estimate MY risk, they may throw out numbers, but, I imagine even in the best case scenario, those numbers will be correct for you a MAXIMUM of 60% of the time; since we know so much less about ALH than the average woman, I imagine those numbers will be correct for you closer to 50% of the time, which is pure chance (i.e. the model does not predict any better than by chance.) This last paragraph is pure speculation on my part, again I am not a statistician, but I can't imagine they know numbers for ALH with or without LCIS, even as a group very well.

Shelley-----"atypia" covers a broad spectrum of risk. ALH confers 4-5x the base risk of 5%== 20-25% risk, so what you're doctors are telling you is pretty much on target.

I was diagnosed over 11 years ago with LCIS (a step further along the bc spectrum with higher risk; 8-10x the base risk==40-50%) and my risk is further elevated due to family history of bc (my mom had ILC); and still all my docs said bilat masts not medically necessary. It really boils down to personal choice. I have not needed any further biopsies or lumpectomies in all these years of high surviellance (I do alternating mammos and MRIs, and take preventative meds (tamox, then evista), but if I did, then I would certainly revisit the option of bilat masts.

With my elevated risk, taking tamox was my first choice. Since you do not have family history, you could certainly choose just closer monitoring; but you can always try tamox and stop if you can't tolerate it.

Anne

hi, i also have ADH on my left , 40 with no family history. Today is my 2 nd day of tamoxifen so far so good. Have nothing to complain, yet.