Prophylactic BLM for ADH?

jll182982006

Hello,

This is my first post ever so I apologize up front if I don't make sense.  I'm trying to read these posts and I'm finding myself very uneducated on a lot of the abbreviations.  I'm looking for encouragement in any way I can get it.  I have a very strong family history of BC.  I've had four lumpectomies since my son was born.  Earlier this year my left breast began swelling at different times.  With all of the issues I've had my doctor told me that my risk for getting BC was 92%. With Aunts, Grandmothers, and my mother all having early dx of age 32 it was inevitable.  I have severe endometriosis so I will be at some point in the future having total hysterectomy so I opted out of the gene testing.  A double mastectomy with immediate reconstruction was the treatment plan set forth by my physician.  I also met with an oncologist as well.  I was very adament and had several "second" opinions.  After much debating, I went ahead wiht the surgery.  Several complications since the initial surgery in April.  I had reconstruction in July and am in need of another reconstruction.  I misjudged the expanders.  I should be thankful because they do look great.  I am thankful becuase I have my health.  I am a thin woman so I have what they are calling "rippling" and it just does not look right.  With clothes on fine, without not so much.  I'm needing help becasue I just dont feel like myself!!  I'm very positive and always have tried to see the best in everything.  Right now, I hate myself and have very low self esteem.  I'm doubting that I made the right choice when earlier this year I was so confident that I had.  I'm struggling with not having feeling in my breasts.  I was never a big fan of augmentation but respected the choices of women who did make that choice for them.  I feel fake.  Almost like this doll that has lost such a big part of who she was and then is just made up of something she is not. 

Does this make sense?  If I have posted in the wrong place, please let me know.  Looking forward to anyones assistance.  Thank you.

Respectfully,

me

happy29

Hi jll18,

 I am sorry that you are feeling this way about yourself   Our feelings do not have to make sense but all your feelings are valid.  You have been through a whirl wind with big decision and now are having complications. BC stinks in so many ways . 

 I think you are ceratinly in the right place by being on BCO (breastcancer.org)  here you will find so many women that have similar feelings and helps us get through this horrible disease.  You may even laugh at times Also try posting questions in breast reconstruction forum. This way maybe the next surgery can get it right.

 Good Luck to you

lvtwoqlt

Hi, jll18, I too have a strong family history of breast and ovarian cancer (mother dx 2001 breast cancer, my aunt dx 1978 cancer of unknown origin - autopsy revealed ovarian cancer). I had 1 biopsy for suspicious microcalcifications on each breast 18 months apart starting at age 44 that showed pre-cancer ADH. After the 2nd biopsy and lumpectomy my surgeon suggested PBM for me because (his words) it wasn't a matter of if I developed bc, but a matter of when. I thought about it for 6 months and at my next mammo it again showed calcifications. This time the biopsy showed DCIS. I did the bilat mast and recon in 2007. I too struggle with low self-esteem. I frequently ask my hubby for reasurrance that he still loves me even with the major scars across my chest. Fortunately I came through all my surgeries without any complications.

I think that we need to get some psychological assistance while we are going through this because our image is changing rapidly and emotionally it can be a challenge. It is a big thing for me to not have the feeling in my breasts also. My final path report indicated that I did make the right decision, it showed additional ADH in both breasts that didn't show up on my mammos.

In the section of newly diagnosed (I think) there is a thread that has alot of the common abbreviations that we use when talking about our cancer.

Sheila

ladydocsings

Hello CT & jll,

I also had ADH...on three stereos 8/08.  Excisional bx confirmed same.  Didn't want 5 years of Tamox since my risk with 3 was ~50% and it would only reduce my risk of developing IBC to ~25% in my lifetime.  I had BPM with Allogerm and TE's and Exchange to silicone...last surgery was May and other than feeling pressure when rolling over in bed, I feel fine and very happy with my decision.  I had no bad side effect or complications, other than i couldn't sleep on either side for 5 months, so i committed myself to fitful sleep in the recliner pulled to the side of our bed.  But I would definitely do it again.  And I feel great that my risk is now what the general female population risk is ... ~5%.  Like a friend of mine said, going through similar surgery (though she had IDC with 1 LN+, unilat MX with Lat flap/TE and exchange), we now have a "new normal"...so true.

Daudine

Bonjour HellofromCT,

 I have no cancer but I chose to have an ovariectomy and a prophylactic bilateral mastectomy last year at 37. I am BRCA1 positive and lost my mother and 2 aunts to BC.

I don't regret having the surgery...it is tough but I am able to say that I have done everything possible to lower my risks.

 I wish you good luck

Claudine