ADH history and nodules

[wh2dowh2do]

Hello! I am a little confused and need a little help. I have not been dx with bc, so that's good news. I have family history of bc (but from what drs have told me, it doesn't count because it is 2nd generation..2 aunts. One dx at age 22 the other age 48. And one cousin dx at age 36. All on my father's side). I had genetic counseling and testing. Fesults were bcra1 negative, bcra2 variant with undetermined significance. Ok. I have had mammograms and mris. They all come back benign. States i have very dense breast however. I have many nodules. Two random nodules were biopsied with both vaccum assisted and excisional procedures. Results were ADH with microcalcifications. After that, i was sent on my way, no talks if tamoxifen would help or anything. I would have been fine with it had the two tumors been all that i had but i have a lot more. So i go to another sugeon who said that i have so many nodules that in order for them to be tested, she would have to remove both breast and she doesn't want to do it because it would be too extreme. I was mortified, i am scared and it effects my sleep. I have also list a lot of weight due to worry. I don't know what is going on inside me. I don't know if anything is lurking in the other areas. Has anyone else gone through this? Am i being cared for properly?

[zouzi]

You are welcome...
This is certainly an unfortunate situation,especially because you don't actually have breast cancer.But I have to agree with the three Breast Specialist who studied your case,that having a mastectomy and breast reconstruction is realistic and may indeed be the best option for you..I believe that a mastectomy, in your situation, would be a sort of liberation for you ,to end the constant worrying,multiple screening, biopsies etc...
I read many posts from women in this Forum,who had this procedure done.They had no regrets going through this experience and are now very happy with the results.I'm sure you'll do very well also.
I wish you well and best of luck to you!

[wh2dowh2do]

Thank you, zouzi.  I just returned from the office and he is also stating in order to biopsy all of the nodules i have, he would have to perform a mastectomy.  Now that three different surgeons (one general, one breast and one oncology surgeon) have stated the same, I'm going to take heed.  This is coupled with my family history and uncertain bcra2 gene variant and untested nodules.  I go to the plastic surgeon next week to set up everything.  I am anxious to get this over with

[zouzi]

Hi,
It's a good thing that you are seeing a Surgeon today to clarify things. Your multiple breast nodules,could be innocuous,otherwise your radiologist would have surely recommended a biopsy as it was done for the ones that turned out to have Atypical ductal Hyperplesia.
It's true that ADH is no cancer,but a condition where there is an "overgrowth" of cells (Hyperplesia) within the duct and these cells look "abnormal" ( Atypical)
This condition can be a forerunner to the development of breast cancer in the future,especially if you have a family history of this disease.Over the course of your lifetime,if the atypical hyperplasia cells keep dividing and become more abnormal, your condition may be reclassified as carcinoma in situ or noninvasive breast cancer.
For this reason, many doctors recommend removing the area of concern.Once this is done,then frequent breast cancer screening and careful consideration of medications,such as Tamoxifen and other strategies to reduce breast cancer risk are also recommended.
I would advise you to make a list of all the questions you have,concerning your condition. Also it is helpful to bring a family member or close friend with you.The person can help you remember what the doctor said.
I hope everything goes well for you and I wish you all the best....

[wh2dowh2do]

I have an appointment today with an oncology surgeon today (referred by my general surgeon that performed my biopsies). I hope this appointment clears things up. Im still worried about having atypical ductal hyperplasia continue to show up each time i had biopsies on the two lumps that were tested.  :-(

[wh2dowh2do]

thank you very much clair749.  Yes my aunts were my father's sisters and my cousin is the daughter of another aunt (my father's sister). knowing that the two lumps that were biopsied with ADH in both, should i not be concerned with the other lumps?  with my family history and a big inconclusive result for my bcra gene testing has me antsy.  ive tried vitamin e for some reason (surgeon suggested it) for four months now and as far as i know nothing is changing my results.  hmmmm do you think i'm getting the proper care?

[clair749]

from reading your question it seems to me that you don't have bc for them to put you on tamoxifen.  You have nodules which don't mean cancer.  My advice to you is to keep an eye on it with regular mammograms and an ultrasound.  Even though a mastectomy is extreme I'm thinking of having it due to my family history and dense breasts.  In regards to family history if your aunt is your father's sister then that would class as family history and not 2nd generation.  If your aunt has married into the family then I would agree with the doctor.  Cousins would also class as family history.  Also Tamoxifen decreases the breast density so if you are worried about that then maybe you should talk to your doctor about that.  Also Vitamin D and Calcium combined decreases density.