Preventative Mastectomy

I am 39 and got a prophylactic bilateral mastectomy and ovariectomy last year at 38. I am BRCA1 positive and never got cancer.

 Do you want reconstruction?

It is a "simple" blood test but it takes longer than some other blood tests, maybe up to a month (some sisters get their results in just over a week, but don't count on it). A Genetic Counselor would really be the best to explain you what is being tested, what kinds of results you may expect, and what practical conclusions to make. Like with all tests, a few percent of the results may be uninformative (hard to tell if there is anything bad in the 2 tested genes, but something looks different). And very rarely, a family may have some unusual mutation which the test isn't even able to catch. That's two of the three reasons why you may want to compare your own results with your aunt's, sooner or later.

The third reason is $$$. Once a mutation is found in the family, then the rest of the relatives may choose to get a test just for this one mutation. It's like 90% off the sticker price. But the $$$ question probably won't matter for you because your own test is coming up too soon to learn anything from the aunt's DNA ahead of time.

Did you tell her about Genetic Information Nondiscrimination Act, or GINA? It's been signed into federal law more than a year ago, and makes it illegal for health insurance to drop people (or reduce their coverage etc.) because of genetic tests.

If your plan covers a PM, it should cover the test too. How much is out of pocket must depend on the flavor and locality of your BCBS. In a worse case scenario with 10% copay, unmet "major test" deductible, and the "cadillac version" of the test (all of the genes and BART) you may be out of $500, even $600. Still so much better than taking all the pain and expense of a PM if you are a true negative and don't need it.

Yes Holly1970, they do the reconstruction at the same time but it takes a few months before it is all over. The plastic surgeon needs to fill the implants every week until the desired size.

I suggest that you have your nipples taken out. They are part of the breast therefor more risks of breast cancer....you don't want to go through all that trouble for nothing....

 Good luck and don't hesitate to send me private message for more questions.

Just a clarification, with immediate implants {not expanders} or single staged DIEP, its ONE surgery and often completed with no further surgery required. Revisions may always be needed, as with ANY reconstruction.  No fills/pain with expanders or no further stages with perforator flaps. Not many surgeons are doing this, but those that do perform these procedures are having terrific success!!  Again, its important to explore ALL options available, including nipple sparing, if this is what YOU want. There is much current research supporting the cosmetic benefits out weigh the oncological risks with nipple sparing. Surgeons that do NOT perform nipple sparing will deter you away and tell you its not safe. Seek opinions from both and decide what is BEST for YOU.

Hi All -

I have tested postive for BRCA 2 - am 53 yrs old and having bilateral masectomy with DIEP reconstruction tomorrow.  As of now I do not have breast cancer - pathology results will tell.  My insurance covered the BRCA testing 100% due to family history - my sister passed away from BRCA at age 37.  My daughter age 24 tested positive for this gene as well.  I have opted not to have nipple sparing surgery as I want as much tissue removed as possible - but again I am 53, married for 30 years.  My daughter will be closly followed and make decisions on treatment as her life progresses.  I am very happy that I choose testing - although I am scared of the surgery tomorrow I know that I made the best decision for me and my family.  My best wishes to all!!

Lucyleester 

I am having difficulty finding a surgeon for nipple-sparing immediate implant surgery. As some have posted, not many surgeons perform this procedure and those that do not have discouraged it. I would at least like to hear both sides, but have not been able to find surgeons that perform this.  Can someone suggest a surgeon that specializes in this?

I'm 23 years old just finished my preventative mastectomy everything went good. looking back I'm happy I made the decision so I can move forward and not have concern.

Shoshi & others,

"Nipple-sparing mastectomy (NSM) has now entered the mainstream for both the treatment and prevention of breast cancer. It is not however, the standard of care for either. NSM in the past was known as subcutaneous mastectomy. In the 1970's, subcutaneous mastectomy was occasionally performed for fibrocystic disease, breast cancer prevention and less frequently for cancer. By the 1980's, reports of cancer occurring in the residual breast tissue led the procedure into disfavor. It was not until the last several years that this procedure was essentially reborn as nipple-sparing mastectomy."

"In examining the studies of subcutaneous mastectomy done in prior decades it was apparent that there were several problems that led to relatively poor results. Most importantly, most subcutaneous mastectomies of the 1970's were performed with a focus on cosmetics and less concern about removing a maximum amount of breast tissue. In many instances breast tissue was left behind intentionally to improve cosmetic results and to prevent necrosis (death) of the nipple. "

"NSM is now usually performed by a surgical oncologist, breast surgeon or general surgeon with a focus on maximizing breast tissue removal, while still attempting to maximize the cosmetic outcome. The term "nipple-sparing mastectomy" now refers to a more radical removal of breast tissue than was carried out during the subcutaneous mastectomy era. There has never been a comparative study that compares nipple-sparing mastectomy with standard or standard skin-sparing mastectomy. A skin-sparing mastectomy preserves the breast skin but does not preserve the nipple. There are large series of skin-sparing mastectomies (SSM) that have been studied suggesting that results are likely similar to standard mastectomy techniques. However, as in NSM, no randomized comparative studies comparing SSM with standard mastectomy techniques have been carried out. At this time, there are no large studies of NSM followed for sufficient time to verify its ultimate safety. Because there are no studies to draw upon, surrogate information must be used to make a judgment as to its appropriate use"....Read on for complete article.

http://www.diepflap.com/nipple_sparing_mastectomy.html