prophylactic mastectomy's

[AuntDEE]

Hi- I am currently considering having a bilateral prophylactic mastetomy. I have a very strong family history and have had 3 lumpectomy's within the last 15 months. I am 41 years old and was wondering if anyone has went this route with recontructive surgery. I had D.C.I.S. in March 2004 and recent biopseys show A.D.H. I would appreciate any information or direction you could share. Thank you again for your time.

[CCF-RN,MSN-rf]

Dear Aunt Dee:  The decision to do bilateral prophylactic mastectomy is a very personal one.  There is no absolute set of circumstances in which this is the only option.  You might benefit from a conversation with a breast specialist who can discuss pros and cons as they relate specifically to you and help you to arrive at the best possible decision. You may also benefit from talking with her doctor about genetic testing for BRCA1 and BRCA2 abnormalities.  If you are BRCA positive, then prophylactic mastectomies would be a means to significantly reduce her risk for breast cancer occurrence, and may be useful for determining your risk for ovarian cancer.

[carme]

I have strong family history too, my younger sister at 47, was diagnosed and had bilateral mastectomies. One year later, I got tested for a BRCA mutation, have a BRCA2 mutation, so I elected to have bilateral mast. I was 50. I had lobular intraepithelial neoplasia.  Our mother died 2001 at 80, of ovarian cancer after fighting breast cancers since 1976. I had elective total hysterectomy Oct. 2004, on recommendation by the genetic DRs. at the City of Hope. I feel so far, that I've done the right thing by having these surgeries while still well. Good Luck.

[rkmsim]

I had bc twice and tested BRCA1+ in January 2004.  I had a bilateral mastectomy last August (lumpectomies when I had the cancer treatment) with immediate DIEP reconstruction.  You can get a wealth of knowledge from others who have gone down this route at www.facingourrisk.org on their message board. Carefully consider all of your options for reconstruction and don't let a doctor talk you into something you don't want simply because they don't do the type of recon you want.  I traveled out of state to get the DIEP reconstruction because I didn't want my abdominal muscles compromised with a TRAM.  It was worth the extra effort.  Best of luck to you.  You will be really happy with the information you will gain at the FORCE website I mentioned above.

[AuntDEE]

Thank you so much for your information. I did see a surgeon in Philly who recomended the flap type. They would take the skin, muscle, and fat from my back. I am a bit nervous about the whole thing.I was just tested for the BRCA1 AND 2 and am waiting for results. What is the DIEP type? I am trying to educate myself about the various options and don't know where to start. Thank you for the web=site. I will check it out tonight. Thanks again.

[SnowWoman]

Check at this site for info on the DIEP surgery:

http://www.diepflap.com/

[rkmsim]

DIEP reconstruction uses abdominal fat to reconstruct the breasts without taking any of the muscle.  As a result, there is no loss of muscle strength in the abdomen.  It is referred to by many people as the "gold standard" of reconstruction.  There are not a lot of surgeons in the country who do the DIEP yet since it requires extra training.  But, it is worth the effort to find one in my opinion anyway.  Check out the website I mentioned in my other message and you can gather a great deal of information about DIEP reconstruction as many of the women there have gone that route.

[Drocilla]

Hi There,  I am currently pending insurance approval for brac testing.  The surgeon feels I'd be a good candidate for prophylactic mastectomy regardless of brac testing/outcome as risk factors are still very high.  After all the biopsies, fear, and pain, I think this would be a huge relief.  I'm very interested in diep reconstruction.  I hear there are mixed beliefs in our medical community but I suspect it's because no one here does them.  Are you happy with the results so far?  Where can I read more about it being the "gold standard"  Thanks so much for your input

[carme]

If you're going to be tested for BRCA mutation, DON'T let your insurance company know nor pay for it. We are still not protected by law from insurance companies discriminating against us for having a genetic  flaw.

[rkmsim]

You can get a wealth of information on the message board on the website I mentioned previously on this thread.  It is the FORCE website - facing our risk of cancer empowered.  I had BRCA testing done and my insurance paid for it.  Once I was found to be BRCA1+, the insurance paid for the bilateral mastectomies and reconstruction.  My daughter is 32 and plans to be tested as well.  Her insurance has already approved the testing.  The initial cost is about $3000 for the first test with a family member who has already been diagnosed with bc.  If a mutation is identified, then only that mutation is checked for other family members and the cost is about $300.  My brother plans to be tested as well since he has a daughter.  If you have a solid family history of bc, especially with a positive BRCA test, then most insurance companies will pay for the test.  There is a fear that insurance companies may discriminate against those who have tested positive, but so far there have not been any indications that is happening according to the information I have been given from several sources.

[AuntDEE]

Hi All- My insurance company did pay for the testing. I will receive my results on the 30th of September. The results are in but they won't tell me over the phone and can't see me till the 30th. The waiting game. I hope and pray my insurance will pay for the prophylactic mastectomy. It has been a long road that I would like to be over. After MUCH thought and prayer I have decided to go that route regardless of the results. I would hate to have to fight the insurance company over such a major decision. What type of reconstruction did you have? Did they do it all at once? How was the recovery. Thank you all for your time and insight. It has been a great help and comfort to me.