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Apr 2, 2019 03:24PM
Apr 2, 2019 03:39PM
On the Mayo calculator I found that IF you have ALH, no other questions besides age at diagnosis are asked. That could account for the streamlining of questions. That tells me according to this model, ALH is destiny, regardless of when I had my first period or if I am overweight.
As for pleomorphic or florid variants, I would think that would make a difference.
For info on # of foci, I asked specifically that pathology provide that info. In fact, it was Mayo that I asked, in a second opinion. (Did not know about this assessment tool when I was at Mayo and Mayo did not mention it). For me, Mayo counted foci not as areas of the breasts with atypia or how many slides of atypia, but affected cells. So I have mucho foci. One radial scar had 4 foci of ALH. After looking at the printed records again, those 4 foci alone give me a 2%-2.5% annual risk. It's in writing in my Mayo records. That does not even include the ADH foci or LCIS.
Here's one factor I could think of that might make the risk outcomes appear so dismal. The study on which this assessment tool was based was first published in 2015, I believe. It looked at data from at least 20 years back in order to compare the 20 year risk with actual 20 year observations. Twenty years ago, or even ten years ago, the methods to detect atypia were not as advanced and fine tuned as today. For atypia to be diagnosed, the foci may have had to be more evident and easily identifiable. So perhaps the more advanced needle biopsies and MRIs of today (and that diagnosed us) see every little abnormality. And that really racks up the foci count. I don't know, just trying to rationalize. But there should be disclaimers then in the Mayo study about new and old technology, I would think.
When I was at Mayo about 6 months ago, I did ask Mayo about this chart below, which is based on Mayo research and validated by Vanderbilt University. Authors are shown here, and names show Mayo connections. I think it originally came out at the beginning for 2014.
Amy C. Degnim, M.D.,1 William D. Dupont, Ph.D.,2 Derek C. Radisky, Ph.D.,3 Robert A. Vierkant,4 Ryan D. Frank,5 Marlene H. Frost, Ph.D.,6 Stacey J. Winham, Ph.D.,4 Melinda E. Sanders, M.D.,7 Jeffrey R. Smith, M.D., Ph.D.,8 David L. Page, M.D.,9 Tanya L. Hoskin, M.S.,4 Celine M. Vachon, Ph.D.,10 Karthik Ghosh, M.D.,11 Tina J. Hieken, M.D.,1 Lori A. Denison,12 Jodi M. Carter, M.D., Ph.D.,13 Lynn C. Hartmann, M.D.,6 and Daniel W. Visscher, M.D.13
I was told to wait and see by Mayo in response to this chart. They were not adopting this research as the standard at that time. But apparently Mayo did feel confident enough about this foci-stratified research to put out a risk assessment tool and make it available for online.
Published in final edited form as:
Cancer. 2016 Oct; 122(19): 2971–2978.
Published online 2016 Jun 28. doi: [10.1002/cncr.30153]
Extent of Atypical Hyperplasia Stratifies Breast Cancer Risk in Two Independent Cohorts of Women