Atypical Dectual Hyperplasia (5)in both breasts extremly dense

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luckymother
luckymother Member Posts: 30
edited June 2014 in High Risk for Breast Cancer

Hi everyone,

Am I glad to find you all? :-)

I am a 48 year old mother. I have two kids (11 and 14). During my annual mammogram last December (2013), they found several-several microcalcifications on my both breasts. At the end, I had to have 5 core needle biopsy, 3 on right,and 2 on left (left one actually is 6 cm large area). It lasted 3 hours with one doctor and 3 nurses. I have no BC in my family.

Result: All are atypical cells, on right one Atypical Ductal Hyperplasia, on left both (the entire area) ADH. I also have EXTREMELY dense breast with tons of microcalcifitions.

I have seen 3 surgeons, First two strongly recommended bilateral mastectomy due to number of ADH I have, dense breast have a much higher risk of getting BC sometime, of they would do wired excisional biopsy.

Third surgeon this  "non-sense" said. She wants to an excisional biopsy on the large area on my left side and go from there..  I may already have stage 0 DCIS on left and she will figure out treatment, right breast will be monitored no additional biopsy even though I have one ADH. If everything is only ADH then I will have to see her next 5 years every 6 months and use tamoxfin.

I AM COMPLETELY CONFUSED NOW. I know that I do not  want to leave in fear and go through  this  every 6 months. I do not feel my breasts define who I am, and already pre-menopuse,.

Can you please share your own experience and choice with me?

All the best,

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  • ballet12
    ballet12 Member Posts: 981
    edited January 2014

    Hi Luckymother--I guess you are lucky, but not so.  Anyway, why aren't they doing an excisional biopsy (lumpectomy) on both breasts, if ADH was found in both breasts?  There could be DCIS on either side. 

    Do you have a family history of breast cancer?  If so, it might make sense to go ahead with the BMX. You might even want to see if you can get BRCA testing, beforehand, to help guide your decision. Also, if you would find it hard to have lots of monitoring, and no doubt, more core biopsies, then maybe BMX would be the right thing.

    Suppose you did have the excisional biopsies (lumpectomies) and they did find DCIS, would you then just go ahead with BMX? 

    I had ADH/ALH found 18 years ago, and wasn't diagnosed with the DCIS until last year, so I went for a very long run without it (with a few biopsies in between).  Actually, they didn't even diagnose the recent DCIS in the stereotactic biopsy.  It was found in the lumpectomy.  I ended up having lots of DCIS, but really was leery of the major surgery and long term issues with mx and didn't want to do reconstruction, so I went with the lumpectomies (it took three to get clean margins). I have a family history of bc, and I tested negative for the BRCA genes.  So, I have tended to take the more conservative approach. I also have extremely dense breasts, even at 61.

    If you do the excisional biopsies, insist on doing it on both breasts.

    I'm sure you'll hear from others.

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  • sunnyat12
    sunnyat12 Member Posts: 42
    edited January 2014


    Hi Luckymother,

    Here is my experience.  My situatation began in 2010 when I had a lump in my right breast.  Because of my age at that time (33) they believed it was only a cyst and I had a FNA procedure done and that was it.  Fast forward to 2012, the lump had reappeared.   I went back to my doc thinking that it was just another cyst that needed aspirating.  During her BE, she found multiple lumps in both breast. I had my first biopsy.  One spot was chosen in both breast and both areas came back with ADH. My mammograms showed that I had extremely dense breast and calcifications. My MRI was a level 3  I have a strong family history of BC and in the month of July, I had the genetic testing done.  At first it was listed as BRCA2 VUS.  My aunt who had BC when she was 22 finally took the test. My status was changed to BRCA2 positive. With the knowledge of my biopsies and lumpectomy results, family history and gene mutation, I went to my first breast suregon and he advised i have a double mastectomy.  I went for a 2nd and 3rd opinion and they all suggested the double mastectomy. I had it done and the results from the biopsy from the mastectomy was i had 22 areas of ADH and one area of ALH.  So to answer the question, yes it is possible to have ADH in both breast.  Good luck to you.

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