ADH- treatment options

bdavis

I posted back on Jan 4th but have since had the ability to read all my path reports dating back 12 years... My history of problems started in 1998 with ADH and I followed the path of follow and watch closely... Had my early mammos and ultrasounds... had my exams 2x a year plus my own exams... and in the end, got cancer and it had spread to my sentinel node (microscopically).

After reading my path report from 12 years ago and from my MRI guided biopsies last November of other suspicious stuff just prior to my Dec 8 lumpectomy, it says I have hyperplasia (without atypia), papillomas, metaplasia, adenosis plus I am not convinced they got all the ADH 12 years ago... so who knows whats in there... Plus on my good side, the report says birad 3, follow up with MRI in 6 months.

After reading all of this, plus I DID get cancer, I have been reading and reading and also feel I need to decide what to do about PBMX before radiation in June because MX becomes more complicated with radiated skin.

So, if I ONLY had ADH, I would spend a lot of time researching and deciding because you have TIME on your side and can do all the MRIs/mammos/ultrasounds til you decide. And even my onc and bs don't think a PBMX is medically necessary for me, and I got cancer.

 My biggest fear at this point is not about recurrance, but more about a new cancer that has already started growing...and next time maybe it will invade some other part of my body... that's my biggest fear... and my onc admitted that even with my chemo and radiation, they won't un-do any abnormal cells... tamoxifen would, but only for the ADH, not the other stuff...ugh.

Good luck!

jolonozo

I am 47 years old and diagnosed with ADH in my right breast and some calcifications in my left.  I have had 2 biopsies and they have discovered that I have it in 3 areas of my Breast. While excision is a must, my surgeon is also recommending a unilateral mastectomy. I do not know what to do. It is suggested too that I go ahead and have a bilateral Mastectomy to avoid any future problems.  It all seems so drastic considering I do not have cancer (as the doctors remind me each time I have an appointment). I am going to an oncologist this afternoon for a 2nd opinion on treatment.  My doctor has stated the mastectomy recommendation is due to the fact they will have to remove large amounts of tissue, hence making the breast look extremely distorted.  Does this seem reasonable?? I am lost, confused and honestly do not know what to do.

vmudrow

Jolonozo - sorry to hear you are going through this, I decided to have a double mastectomy for ADH. I have a strong family history, did not want to take tamoxifen (that was the oncologists treatment), I was tired if the worry and the constant monitoring that would be scheduled. Because it wasn't cancer i was able to have nipple sparing, I have been very happy with the whole process. It is a hard decision, let me know if you have ant any questions.



Hugs, valerie