elective double mastectomy?

[Anonymous]

My mom died of breast cancer at age 48, maternal aunt has it, paternal aunt has it. I am considering getting tested for the BRAC1 and 2 genes, and if so, I am considering an elective mastectomy. Does anyone have experience with:

1. Genetic testing sites? I've been referred to the one at Gtown. Is it good?
2. Breast surgeons?

I am followed aggressively for preventative care/routine mammo/MRI at Georgetown already.

[Anonymous]

Who supervises your screenings? I go to a breast surgeon for this and highly recommend Dr. Alley.

I am also considering prophylactic mastectomy.

[Anonymous]

I don't have any recos, but I do have a friend who tested positive for the gene, which meant she had an 80% chance of breast cancer. She had an elective double mastectomy and hasn't looked back. Apparently she also has a 50% chance of ovarian cancer, which would likely not be caught in time to cure even with aggressive monitoring, so she recently had her ovaries removed as well. She is unmarried and has no kids, but she has frozen her eggs and still hopes to be a mom someday. It's such a tough thing, but I know she is ultimately glad she found out and could make an informed decision.

[Anonymous]

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.

[Anonymous]

OP here, this is EXTREMELY serious. Testing positive for the gene comes with a HUGE likelihood that one will develop cancer. I have not yet been to genetic testing, so I don't have the exact numbers, but a friend of a colleague did this too. I figure, I breast fed my two babies, and if I turn out positive, why keep 'em around?

[Anonymous]

OP again: I see Dr. Warren at GUH. He's great, head of the Betty Lou Ourisman Center. Thanks for your rec...

[Anonymous]

I would definitely get the BRAC test. I was tested--maternal incidents of ovarian (grandma) and breast (mom) cancer, and of Ashkenazi descent. I am relieved to be negative for the BRAC 1&2 genes but I still plan to have my ovaries removed once I hit menopause. I know people worry about insurance risk of genetic testing but I personally would rather know than not know. Plus if I were positive for the test, my current insurance would cover more screenings for me (e.g. ultrasounds, breast MRI, etc) because of my risk factors. Plus with GINA law, insurance companies cannot discriminate based on genetic testing.

Your current OB can give you the genetic test. I did meet with a genetic counselor-the same one I met with when I was pregnant and having a CVS and genetic blood work done.

[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.

It is often suggested for women with certain genetic mutations that predict an 80% chance of developing BC as young (my mom was 30) women. I think there's pretty high confidence in the genetic testing, the assumption is that such patients will almost certainly get it early, and of course, once you have an actual malignancy the treatment sucks more than the disease (initially) sucks. I believe that pre-menopausal women also have faster-spreading tumors, too.

[Anonymous]

PP again. Dr. Alley was my mom's breast surgeon. She was really great through my mom's ordeal--who thankfully is 2+ years away from her treatment (lumpectomy, chemo, radiation) and currently cancer free. I'm sorry you lost your mom. I remember the fear I felt when mine was diagnosed with stage one breast cancer but an aggressive form. If I were positive for the gene I have no doubt that I would explore and consider all of my options.

[Anonymous]

To one of the PPs in particular- a double mastectomy does sound fairly dramatic. But, I'd talk to some surgeons and research the results of what they are doing these days- some of the reconstructive surgery is fantastic. Truly, the results come out much better than a lumpectomy. You may not have "picked" getting a boob job in the first place, but to avert cancer and all the anxiety that could accompany a BRCA1/2 identification, it could WELL be worth it.. and you could get the boobs of your choice perhaps.

I speak from some experience, though not breast cancer experience. I had lymphoma, a blood cancer. Blood cancers are pretty random and can happen to absolutely anyone. I could have died very young from this disease. There isn't a big warning sign like with the BRCA gene. I can't say what choice I would have made if faced with the BRCA gene, or with the loss of my own breasts due to cancer or a prophylactic effort to avert cancer. But I can tell you, I'd certainly have a prophylactic mastectomy (with great reconstructive surgery) to live my life and see my children grow up.

I would recommend LOTS of research and thought... all the best to you in this difficult decision.

[Anonymous]

I saw this documentary by someone who tested positive for BRCA - you might find it useful (it may be available on netflix). http://www.pbs.org/pov/inthefamily/

Good luck with whatever you decide.

[Anonymous]

Try Dr. Marie Pennanen - a breast surgeon. She is the best! Dr. Pennanen used to be with Georgetown, but is now in Chevy Chase. She will test you for the gene and help you decide about elective surgery.

[Anonymous]

I recommend you meet with a geneticist for the testing rather than just going through your gynocolgist's office - Georgetown and Sibley have good ones. Also, you may want to check out the FORCE website - lots of good BRCA info on there. I also recommend the Joanna Rudnick PBS documentary In the Family that a PP recommended.

[Anonymous]

I also recommend Dr. Alley. She has been the top of the field for years.

[Anonymous]

Breast cancer survivor here. I used the Fisher Center at Georgetown for my genetic testing. I thought they were great, very sympathetic during the pre / post test counseling (I did my test as part of a study so I had periodic followup with a counselor for a year after test). The test itself was easy and I got the results very quickly.

I had my mastectomy at Georgetown, but with a surgeon that recently left for another hospital. I thought my care was good and was happy with the results (did have some communication problems with my breast surgeon initially, but those were resolved). Hope this helps.