Nobody will do a PBM on me

center1

I have ALH and I can't stand living with the anxiety anymore.  It's ruining my life.  While I appreciate the thoroughness, the constant callbacks for additional mammograms and ultrasounds is making me crazy.  I want a prophylactic mastectomy but nobody  will do it.  I don't have a family history of breast cancer and I think that's why.  Anyone here had a PBM with ALH and no other risk factors?  

KayG

I have ALH and I am having a PBM on Oct 6. I have an extreme family history though. And I also had a surgeon who was not that supportive while I had many biopsies the last three years. The ALH is what put me over the edge though. As it happens, my surgeon retired in August and I went to a new one who is very supportive. Do you live in a place where you can get a recommendation for another surgeon?

center1

Thanks for your response.  Since I don't have a family history combined nobody will do it.  Why do you suppose we have so many biopsies?  Does ALH mean that we will always have biopsy after biopsy?

center1

BTW, best of luck with your surgery!  

momoschki

Center, I replied to you on your other thread, but just wanted to share my experience with you.  I have a dx of ADH, so similar risk profile, no family history.  Initially I was (mis)diagnosed with dcis and was planning a BMX with my breast surgeon.  As soon as it was determined that it was atypia we were dealing with and no cancer, my doctor took the mastectomy option off the table, telling me that it was massive overkill and that she would not do it.   I just wanted to let you know that I suspect your experience is not unique.  Have any of your doctors been able to estimate what your own particular risk profile is?  If you are still determined to have the surgery, I would continue to search for a surgeon who is onboard, but I'm guessing this may be difficult as PBMX (with no family history) is not the standard of care for ADH/ALH, so far as I know.

center1

I'm thinking of you today as you go through your surgery.  All the best to you.  BIG hugs!

Lotusconnie

Best of luck to KayG! 

Anonymous

center---no, having ALH does NOT mean  "it's a given" that you will be facing biopsy after biopsy.  There is no way to predict what the future will bring. But I can speak from personal experience from having LCIS (a step further along the bc spectrum with double the risk of ALH) and my risk is further elevated by family history of bc (mom had ILC);  even with that combination, I haven't had any further biopsies or lumpectomies in 11 years since diagnosis. I like to credit the preventative meds (I took tamoxifen for 5 years and have taken evista now for about 5 years); they also decrease breast density making  it easier to detect things earlier; I also have tried to make an effort to eat healthier and exercise more frequently.  ALH with family history is considered high risk, but without family history, it is considered a moderate risk; hopefully, that will put it in perspective for you and help to decrease some of the anxiety. Just keep vigilant with your follow up, do your breast exams, try to live a healthy lifestyle (thru diet , exercise, no smoking, limited alcohol); and perhaps considered tamoxifen as a preventative.