Preventative Mastectomy

Holly1970

I am 38 years old and would like to know if anyone has chosen a Preventative Mastectomy.  I am considered high risk as many family members have had BC (My mother died at age 48). I am seeing a preventative Cancer Specialist on Friday, October 2.  My PCP thinks that with my "area's of concern" and breast tissue changes that I will have a diagnosis of BC within the next five years. 

I am trying to get all the information I can before Friday so I can ask questions and be well educated, before I see the specialist.

Daudine

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?

Mutd

Holly, did you discuss your family situation with a Genetic Counselor? You may be able to find it if your risk is high or low by taking a genetic test. There is quite probably a BRCA gene mutation in the family. if your mother got a mutation, then your chances would be 50:50 to have the mutation passed to you (and high risk) or not passed (and then the risk should be very low).

 But if no family members were tested yet, then it is always a better idea to start from testing someone who already has cancer. A Genetic Counselor should be able to weigh all the facts and to tell how likely is a mutation, and how to start looking for it in the best way.

www.facingourrisk.org  has a lot of advice on mutations in breast cancer families, a directory of Counselors, and a lively message board, please take a look.

Holly1970

Yes I would, I have done some research Daudine. I think the nipple spairing would be my choice.  I don't really know all the lingo that everyone on here uses.  Can they do the bilateral mastectomy and reconstruction at the same time?  I have the gene test on Friday also is that what the BRCA1 is?

Holly1970

Mutd,

I only have one aunt left who has had cancer the other 2 have died.  She had a bilateral mastectomy, no reconstructive surgery and no treatment.  She is now cancer free.  We, my sisters and other aunts, have asked her to be tested but she fears that her insurance will drop her if she has the testing and is found to have the gene.  We have talked to her until we are blue in the face and cannot get her to change her mind.  My PCP said that the Cancer Prevention Specialist has ordered the genetic testing to be done also on Friday, Oct. 2.  Can you tell me how this test is preformed (give blood etc,?). 

Mutd

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.

Holly1970

OK so how much $$$ are we talking about for this test?  Does Blue Cross Blue Sheild Cover?

Yes we have shared printed documentation to show her about the ACT and she still wants to wait and see how it effects others first.  Hopefully one day soon we can change her mind.  I also e-mailed her this site and asked her to check out all the information on here.

Mutd

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.

LISAMG

Hi Holly,

I have BCBS insurance and was the first family member to seek BRCA genetic testing done 3 yrs. ago. They paid the full amount [$3000.00] for my testing based on family history, using evidence based criteria. You should not have a problem since your family history is compelling. I was also approved for a PBM based on family history alone. Fast forward to now, still no decisions here with multiple bc's and ovca on both sides. Excruiatingly difficult decisions.

For prevention, nipple sparing is a fabulous option and one I am also contemplating. You must seek highly skilled surgeons for nipple sparing and a plastic surgeon that work together frequently and NOT sporadically. You also have the option of implants or perforator flaps from your own tissue. I strongly recommend you buy Kathy Stilego's book, The Breast Reconstruction Guide. It explains ALL options. Remember also, surgeons will often only recommend their specialty and NOT always what YOU want. Have you had a breast MRI? Do you have a personal history of biopsies? Atypia? Breast Density?  Seek opinions to make the best choice for YOU. Best wishes.

 Lisa

Daudine

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.

kreativek

Yes, I chose a preventive mastectomy due to my high risk.  My mother and both grandmothers had breast cancer and I had ADH.  I had nipple sparing/skin sparing and silicone implants.  I am very happy with my decision.  I feel very relieved and very free from breast cancer worry.  I had a 60-70 % chance of getting breast cancer.  It now about a 4% chance or less.....far less than the general population.

LISAMG

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.

middlesister2

LISAMG,

what are immediate implants?  My potential PS mentioned them, but I did not realize what they were.  Are you really happy with your results?

lucyleester

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 

LISAMG

Middlesister, I sent you a PM! Immediate implant reconstruction also known as the one step procedure. Implants are placed under the pectoral muscle instead of expanders, to avoid the expansion process AND a second [exchange] surgery!  Now, in order for a PS to place implants and avoid expansion, Alloderm is used to cover the breast implant pocket since the muscle alone can not cover the entire implant. This is done almost like a sling to hold the implant and give the breast a lift.

 Not many surgeons are doing this so, its important to find experienced docs for the best outcome. Hope this helps. You can learn more about Alloderm and see actual surgeons performing this procedure by viewing the link below. Click on Dr.Salzberg's procedure to view the NON-expansive Immediate Implant Breast Reconstruction Video.

http://www.lifecell.com/breast-reconstruction/302/

Minnesota11

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?

LISAMG

Minnesota, I just sent you a reply! Best wishes.

bhope23

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.

Tinkerbell99

i am due to have a bi-lateral mastectomy in Dec b/c i am high risk & have had many issues.  I do not know what nipple saving/sparing is, so please explain this to me.  I am having the 1 step implants w/ AlloDerm. I know there is a board on here that posts on that .  Can u explain abt  nipple thing.

LISAMG

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

unklezwifeonty

Dear Holly,

Please request your PCP to get your BRCA gene test and refer you to a certified genetic counselor. Your PCP may or may not be well trained to review family histories for BC. Also, it may be that the history is more extensive than what you have posted but it does not seem right to me for the PCP to suggest that you will get cancer in the next 5 years.

Once you have gotten the BRCA gene test results, then you will be able to deal with this more easily.

Also, yes women get prophylactic bilateral mastectomy and immediate reconstruction done all the time.

Good luck and keep us posted.