elective double mastectomy?

[Anonymous]

I have posted on this thread sporadically. I have just had a prophylactic bilateral mastectomy with nipple sparing procedure at Georgetown (I met with Dr. Teal, though and thought she was AMAZING), I am just more comfortable at GUH. My surgery was 4/17/13, so I am very recently out. It has been quite emotional, and I am still in the throes of recovery. I am confident in my decision, and would be happy to answer questions about it. I am BRCA negative, BTW, but have an incredibly remarkable history, including mom dx at 39 (died at 48), aunt dx at 37 with recurrence in mid 40s, and paternal aunt with dx at 41 with recurrence in late 40s.

[Anonymous]

PP glad to hear you are through the surgery. I don't know much about this, so pardon my ignorant question. Is a prophylactic mastectomy still indicated if you are negative for the gene? Do some docs recommend doing it anyway because of the strong family history?

[Anonymous]

Wow. I have two aunts who have had double mastectomies, plus a bunch of extended relatives who have gotten breast cancer as well. My aunt who had the procedure is a doctor but she never mentioned doing this procedure before a cancer diagnosis. Wow. So much to think about. It is so sad so many of us have this hanging over us. *Hugs to everybody*

[Anonymous]

OP here.
If one is BRCA negative, as in my case, it was an individual choice highly supported by my oncologist, breast surgeon, and plastic surgeon. Though I tested negative for the gene, clearly something is going on in my family, and the specter of cancer hanging over my head was too much to bear.

I thought about it, did my research, and am forever grateful to the physicians and genetic counselors at GW and GUH (especially the Fisher Center at Georgetown for genetic testing). There is also an organization called FORCE that deals with familial cancers. Lots to think about, and important legislation to make sure things don't become a barrier to this procedure.

[Anonymous]

Anonymous wrote: is this serious?

you'll take your boobs out even though you're completely healthy?

how accurate are those tests?

i have several cases of BC in my family but i would never EVER do it.

You have no idea what the hell you are talking about. Testing positive for the BRCA gene is VERY serious. OP I've had two friends test positive and did elective double mastectomies. They are very happy with their decision. Had I myself tested positive I would have done the same thing.

[Anonymous]

OP here...thanks for the boost. It has been more grueling emotionally than I was prepared for, but I feel so amazing about my decision, and the ridiculous above poster doesn't even phase me, as I know 4 other women who did exactly as I did...
Thanks again for the support...

[Anonymous]

Anonymous wrote: is this serious?

you'll take your boobs out even though you're completely healthy?

how accurate are those tests?

i have several cases of BC in my family but i would never EVER do it.

I would definitely do it with a strong family history and a positive for the gene. Why wait with 80% odds??

[Anonymous]

I did the same thing you did 7 years ago. I am not BRAC positive but do have plenty of cancer in my immediate and extended families. Still thrilled that I never have to sit through the fear if mammograms! I have been there. Good Luck!

[Anonymous]

Op how was the operation and how is recovery going? Did you have a reconstruction too?

[Anonymous]

OP here...I'm 10 days post op, and the hardest thing has been the emotional part. Since I had the nipple sparing technique (the nipple as well as the breast tissue is biopsied and all is clear) there is always a chance of decreased vasculature to the nipple which results in necrosis. So, I have had to do 4 hour sessions in a hyperbaric chamber to bombard the tissue with oxygen. It's doing MUCH better, but this wasn't explained to me beforehand, and it has been very, very hard emotionally. Pain wise, I've been carefully controlled with narcotics for the first few days, then valium to help with the muscles since the expanders are in. I go in to the plastic surgeon on Monday to see how the one breast that was "struggling" is faring. Thanks for the support!

[Anonymous]

OP- Did your insurance cover your procedure? I'm just curious. I only have one aunt who died of breast cancer and am planning on being tested for the BRCA gene. Even with only a moderate family history, I'd happily undergo an elective double mastectomy to avoid spending my life worrying about breast cancer. With your family history, it definitely seems like you did the right thing. Good luck with your recovery.

[Anonymous]

OP here...insurance is covering most everything. I have federal BCBS. The hospital does a precert to make sure the insurance company will pay--not--as my husband reminded me--because they are nice, but because they want to get paid....

[Anonymous]

OP - are you a federal employee? I'm a fed and I have long been considering genetic testing and potential double mastectomy, but prior to the recent health legislation, I was concerned about getting a positive result to the genetic testing and then having insurance companies limit my treatment because of "preexisting" conditions.

It seems like that is no longer a threat, so I've been getting ready to start this journey. My mother was diagnosed with breast cancer at 50, my grandmother in her 60s, and my grandmother's sister died of it in her 30s.

Can you share a little bit more about how difficult it was to get your insurance to cover the elective procedure? Were they willing to do it just based on the doctor recommendation, or did it take some time to build the case?

[Anonymous]

Not OP. When I had my bilateral prophylactic mastectomy in 2006, my Federal BCBS covered the surgery but not the reconstruction. We had to appeal and they still wouldn't cover it ..all because I had not been diagnosed with breast cancer!

I don't know if things are still the same. I would be interested in hearing whether or not the reconstruction IS covered by insurance now. Mine was done by a plastic surgeon, who had done a fellowship in breast reconstruction.

I didn't really suffer emotionally at all from losing my natural breasts. I was relieved the moment I woke up and I am relieved whenever I hear the women around me at work talk about going for mammograms. Yuck. Glad that I don't have to do that anymore.

[Anonymous]

Np here (although I think I may have also posted earlier -- this time I just read the last page). Just sending my very best wishes to the OP and the PP who also recently had surgery. The first weeks are difficult but it does get better. And I had such a feeling of relief after I woke up from surgery. It really made all of the pain and inconvenience (oh, those drains) worthwhile. I am BRCA2+ and also had an oopherectomy. Both surgeries were 6 years ago when I was 39. My mom was diagnosed with breast cancer at 41 and died at 44. I turned 45 earlier this year -- a big "motherless daughter" milestone for me. To OP and PP, I am thinking of you and wish you both an easy recovery.