elective double mastectomy?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

Before you go saying what you would NEVER EVER do, maybe you should actually know something about what you're talking about. This is a very real thing and many women struggle with a very tough choice. My friend was given an 80% chance of developing breast cancer and a 50% chance of developing ovarian cancer, which is even more likely to be deadly. Those are not good odds, and yes the tests are accurate. My friend is not a mom yet but I can't fathom thinking my boobs or even ovaries are more important than seeing my kids graduate high school or get married. I don't think you can ever say what you would do in this situation unless you are in it.

My health insurance doesn't cover it because of my age.

You don't even know me to tell me what I would do or not do.

I've lost almost all the immediate women around me to cancer (aunts, grandmas, nieces) and I will tell you: Unless I develop the disease there's no way on Earth I'd do a full mastectomy or salpingo-oophorectomy (or any sort of hysterectomy) based on tests.

Doctors have messed up with me before and I'll wait until I feel or see it to believe.

I'm sorry that you have lost so many relatives, but it was clear from the tone of your initial post that you have no clue what you are talking about on this topic. (Clearly you've now done some googling, which is a great place to start.) But I don't care who you are, you can't say for sure what you would do if given an 80-90% chance of developing a condition that may not be found until it is already killing you. It's good to be skeptical of the medical community, but if the gene really is a possibility for you I'd recommend doing your own research to weight the risks and benefits of getting tested rather than relying on your emotional response to some bad experience you had in the past with doctors. I respect your right not to find out your own status, but I can't respect your ignorance about the whole process while you belittle those who are struggling with a very difficult decision.

In any case, I hope at the very very least you get regular mammograms. Yes that's a medical test but if you're waiting to "feel or see" cancer, you've got little chance of catching it early enough to save your life.

[Anonymous]

Yes, skeptical PP, I wish you had been less abrasive, but you really ought to understand that by the time you "see or feel" evidence of either a breast or ovarian malignancy, you're in for devastating treatment at the very least (in addition to disfiguring surgery that's coming anyway) if not a miserable death. No one will make you have prophylactic surgery, but it is unwise to lump (ha!) radiologists in with the doctors you don't trust.

I agree with another PP who pointed out that fully reconstructed boobs offer a better aesthetic result than lumpectomies. It also sounds to me like radiation treatments take an aesthetic toll, not to mention the protracted hell of chemotherapy. If mutilation is coming, it is best for it to come under the most controlled circumstances possible.

[Anonymous]

Anonymous wrote:Yes, skeptical PP, I wish you had been less abrasive, but you really ought to understand that by the time you "see or feel" evidence of either a breast or ovarian malignancy, you're in for devastating treatment at the very least (in addition to disfiguring surgery that's coming anyway) if not a miserable death. No one will make you have prophylactic surgery, but it is unwise to lump (ha!) radiologists in with the doctors you don't trust.

I agree with another PP who pointed out that fully reconstructed boobs offer a better aesthetic result than lumpectomies. It also sounds to me like radiation treatments take an aesthetic toll, not to mention the protracted hell of chemotherapy. If mutilation is coming, it is best for it to come under the most controlled circumstances possible.

The think is that you'll never know for sure.

BTW, my cousin just found out after 4 years of pain that the source of his unbearable pain (getting morphine shots once a week from his mom who's a nurse) was a bunch of stones in his gall bladder that doctors and radiologists have been missing since 2006.

There's no way I'll let them cut me open if I don't need to.

[Anonymous]

Anonymous wrote:I am BRCA2+ and have had a prophylactic double mastectomy and oopherectomy (ovaries removed) and it is one of the best decisions I have ever made. My mother passed away from breast cancer when she was 44 and I was 18. I am 42 right now and my children are only 9. I still feel like I have missed a ton losing my mom at 18. I couldn't imagine what my children would go through if they lost me at 10. When the BRCA test first came out, I didn't have kids yet. My ob-gyn told me to wait to take the test until I was (i) close to the age of my mother's diagnosis, (ii) through having children and (iii) ready to actually take action if the test came back positive. When I was 39 I took the test with a geneticist in another state (where I lived at the time). The genetic counselor told me my odds of testing positive were low (based on the family history I gave her). But I had a feeling I was going to test positive. When the results came back positive for BRCA2, I have to admit that I was actually relieved. I hated going for my yearly mammograms (I had been going since 30) and didn't want to have to keep going until I got the bad results that I always felt were going to come one day. I was happy that I could do something proactive about this -- I guess maybe have some control over it in the way I never did when my mom was sick. As other posters have said, people with BRCA1 and BRCA2 are also at risk for ovarian cancer, and, after getting the positive results, the geneticist and genetic counselor more or less told me to leave their office and go get my ovaries removed. They didn't want me to wait a long time for that surgery. At the end, my timing was: April - BRCA2+ result, May - Breast MRI - normal (bought me a little time on the mastectomies), August - prophylactic oopherectomy, November -- prophylactic double mastectomies with start of reconstruction, Jan - final reconstructive surgery. No one should judge what anyone else does. This is a very personal decision and OP, you have to do what is right for you. All I can tell you is that before my surgery I used to worry every day about breast cancer. Now I feel that I could still get hit by a bus and die at 44. But I am not going to die of breast cancer. Best of luck to you.

Thanks for sharing your story, PP. Congrats to you. One of my dearest friends will have a prophylactic double mastectomy and immediate reconstruction next week at Georgetown. She has a similar story to yours - mother and aunt had breast cancer, one sister had breast cancer, another sister tested BRCA2+ and had a mastectomy/reconstruction, and my friend tested positive as well. I've gone with her to some of her appointments at Georgetown and was told that her risk of developing breast cancer will drop from 80% to 5% (because she is keeping the outer part of her breasts). Her friends, sisters and I are all gearing up to take care of her during her recovery (she is single). One doctor told her there was no need to rush to have her ovaries out because she doesn't have a family history of ovarian cancer. But another doctor said she needs to get that done as soon as possible. It's impossible for her to think about that until the mastectomy/reconstruction is over.

My friend had a good experience with http://www.bebrightpink.org/ It's a support group for young women who are high risk for breast cancer. My friend was able to talk with another woman close to her age who has already had a prophylactic double mastectomy/reconstruction. That was a very good conversation. It helped my friend take the final steps emotionally to commit to doing this.

Best wishes to everyone dealing with this.

[Anonymous]

OP, I think you are being completely reasonable and responsible. My close friend tested positive for a BRCA mutation and had a double mastectomy at 30 years old. She watched a mother and aunt go through a horrible illness and she said there was no way she could sleep at night knowing that she was at at that high of a risk. She's holding off on her ovaries for a bit longer til she's done having children, but her doctor's have told her not to wait too long for that either. Also, your genetic counselor can also explain some of the insurance stuff to you. I believe that you can't be discriminated against for health insurance (new GINA law-genetic information nondiscrimination act ) but I think it can still affect life insurance.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Yes, skeptical PP, I wish you had been less abrasive, but you really ought to understand that by the time you "see or feel" evidence of either a breast or ovarian malignancy, you're in for devastating treatment at the very least (in addition to disfiguring surgery that's coming anyway) if not a miserable death. No one will make you have prophylactic surgery, but it is unwise to lump (ha!) radiologists in with the doctors you don't trust.

I agree with another PP who pointed out that fully reconstructed boobs offer a better aesthetic result than lumpectomies. It also sounds to me like radiation treatments take an aesthetic toll, not to mention the protracted hell of chemotherapy. If mutilation is coming, it is best for it to come under the most controlled circumstances possible.

The think is that you'll never know for sure.

BTW, my cousin just found out after 4 years of pain that the source of his unbearable pain (getting morphine shots once a week from his mom who's a nurse) was a bunch of stones in his gall bladder that doctors and radiologists have been missing since 2006.

There's no way I'll let them cut me open if I don't need to.

Right on, PP. Who needs research and science when you can base a critically important decision on some random (and frankly unrelated) anecdote about your cousin?

[Anonymous]

To the skeptical PP: IF I tested positive for the BC gene, I would probably take them off as well. I would rather live and thrive with my family and see my kids grow up, then die of BC early. If there was even a small chance of preventing getting BC, I would do it and it would mean taking the boobs off. My life is more important than my boobs. When you're 70, nobody is going to be interested in your boobs anymore anyways, but at least you still have a life to live.

[Anonymous]

A friend of mine had a double elective mastectomy when she was 28 and reconstructive surgery about a year(?) later. It was a rough year for her emotionally and she at times questioned if she had done the right thing but now a few years down the road she has no regrets.

[Anonymous]

Anyone with any type of breast issue (cancerious or non-cancerous) should go to the Center for Breast Health at Virginia Hospital Center. They have three great women surgeons, top notch. My Mom was a patient of Molly Sebastians and we were so impressed. We also received a second opinion from Gtown and it was night and day - Virginia Hospital Center is cream of the crop!

[Anonymous]

Double prophylactic mastectomy at the age of 43. strong family history of Breast Cancer. Mom and Sister. Best thing I've done. I love NOT having them. No bras, no mammograms, and 90% reduction in risk. Love it!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:
There's no way I'll let them cut me open if I don't need to.

So you would rather have your boobs intact and die later on because you were going to wait for the cancer to come? Very ignorant but if you want to get sick its your choice. Very sad.

[Anonymous]

Anonymous wrote:Anyone with any type of breast issue (cancerious or non-cancerous) should go to the Center for Breast Health at Virginia Hospital Center. They have three great women surgeons, top notch. My Mom was a patient of Molly Sebastians and we were so impressed. We also received a second opinion from Gtown and it was night and day - Virginia Hospital Center is cream of the crop!

I was a patient of Dr. Akbari's, who is also at The Center for Breast Health at Virginia Hospital Center. I did receive another opinion from Sibley and Gtown and felt that the program at Virginia Hospital Center was top notch. The physicians are wonderful and really cater to he patient.

If anyone has been diagnosed or is looking for a breast surgeon, atleast give them a chance and get your second opinion there - I think you will see the difference.

[Anonymous]

Make sure you get a good life insurance policy before any testing takes place.....

[Anonymous]

Just read the current Washingtonian magazine with the article about Dr. Teal--the head of breast surgery at GW who opted to have a prophylactic bilateral mastectomy at 44 even though her BRACA tests were negative. Her mom & best friend had breast cancer--her mom had a return with a virulent form of breast cancer after being cancer-free for a while & had been on Tamoxifen...She sees young women with breast cancer all the time in her practice...

it made me think more in favor of having such a procedure myself even though I am BRACA negative too (my mom & grandmother had breast cancer post menopausally, I had fertility treatments, had a baby late in life, cystic breasts that are not clear on mammograms, I'm an Ashkenazi Jew & have toddlers who I want to see grow up)....

Anyone read the article and/or have any thoughts on non-BRACA positive folks getting prophylactic mastectomies & oopherectomies?

[Anonymous]

OP here. One year later. I have been tested for the BRCA gene, and am negative. I am going forward with the elective double mastectomy (not oopherectomy, since no ovarian cancer in my family, and negative BRCA) with Dr. Teal. I have extensively researched and spoken with many women. Thank you to all that have responded, and I am scared out of my wits, but feel sooo confident in the team of Teal/Lennert. Good luck to others making this very personal decision.