Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

HI
I had my first mammogram 1/2/19. They found a spot and wanted to do a ultrasound, after the ultrasound they decided that I needed a core biopsy. Had that done 1/15/19. The results came back with Atypical ductal Hyperplasia (ADH). Now they want to do a surgical biopsy to check the surrounding area and remove ADH cells. I think I am understanding this all correctly. February 6 is the surgical biopsy. I haven't told my family, other than my husband. My cousin died last year with triple negative and my family will be so devastated if this is cancer. The waiting is the worst.

It is very overwhelming at first....it really is. And each decision is important but it will get easier as you get more familiar and comfortable with the process, the tests and the options. Your doctors will make recommendations but unfortunately only you can make those final decisions. Hopefully you have family or friends to bounce the decisions off of as well and of course, we're all here for you too. You'll find lots of experiences here and will find that many women make various decisions throughout the process you very aptly named the medical vortex. Hugs and best wishes for good news for you.

Here are some relevant videos related to this discussion about atypical breast lesions and prophylactic mastectomy - I hope.

@cindylb I do have a good support of family and also my co-workers too. Yesterday was a difficult day...having all the signs of an anxiety attack, but today is better as my son, dil, and grandbabies decided to spend the weekend and keep me busy. I am not looking forward to the surgery, but mostly a bit scared over the anethesia. Just taking each day as it comes the best that I know how.

I was scared about the anesthesia too..........I can relate. But here I am and you'll be AOK too........Big hugs. Keep us all posted and keep reaching out. We've all been there. They are quite good at breast cancer surgery now. As my surgeon said, 'just be glad it's your breasts and not your insides'......those are much harder to be 'good' at getting whittled on, or so she thought (my breast surgeon was a general surgeon so she did multiple types of surgeries).

@cindylb Thanks so much...marker goes in tomorrow at 8:30 and surgery at noon. Thanks for the hugs - I really need them! I'll keep you posted...

As someone diagnosed with ADH, ALH, LCIS in both breasts from 4 biopsies at ages 58-59, I have spent a lot of time researching and have gotten numerous opinions from both oncologists and surgeons, including at Mayo*. The various online breast cancer sites I am on are filled with women who have opted for prophylactic mastectomies for these atypia conditions and the overwhelming consensus seems to be they are happy with their decisions. All the doctors I have talked to (with the exception of one oncologist who said she would not persuade me in any direction) say NO to prophylactic bi-lateral mastectomy.

I wonder what these doctors would say to one of the women they have counseled against breast removal after she has gotten an advanced stage of cancer. I always ask surgeons, radiologists, oncologists, NPs in breast care, etc. if they encounter late stage breast cancer, metastasized cancer or deaths from women who started with atypia and kept their breasts but eventually proceeded down the road, perhaps many years later, to something really bad. The answer they always give me is no, they don't see that.

But it seems there is a disconnect between women with this disease who want to remove the problem and the medical staff who seem to be more open to the risks. In fact the recent trends are less and less intervention, whether lower doses of drugs or less surgery.

Just wondering how the rest of you out there--pros and laypeople--might respond. Thank you.

*Very impressed with ALL aspects of my first visit to Mayo. What a place!!

@elsie37
As a 52 yo woman with ductal and lobular atypia, schedule for DMX next week, I have to draw upon my background as a Financial analyst, and behavioural analysis , to make sense of that disconnect. It’s all about the risk analysis. And human tendency.
Study after study shows we humans are LOSS averse. Not risk averse. In fact we will take on additional risk in order to not ‘lose’. (Eg - someone at Vegas, already ‘down’, will DOUBLE DOWN (thereby taking on MORE risk ) in the HOPES of not ending up LOSING. )
We woman do NOT want to lose our lives. So we’ll take in the risks of surgeries to avoid that loss. The Drs? It’s not THEIR life they are pondering the potential loss of, so they completely objectively simply look at numbers and statistics.

@cindylb Thanks so much...marker goes in tomorrow at 8:30 and surgery at noon. Thanks for the hugs - I really need them! I'll keep you posted...