I'm 23 and my boobs need to go.
February 23, 2008 8:47 PM   Subscribe

I am 23 and I have the BRCA1 gene mutation. My mother had a double mastectomy in her 40s, because of precancerous cell growth, and both of my grandmothers have had breast cancer pre-menopause (both are fine.) I'm basically a ticking time bomb. I'm interested in hearing any stories from women under 30 -- or women that you know -- who have undergone a voluntary double mastectomy because of their family history and/or the gene mutation.

I don't give a damn about my breasts, aesthetically speaking, and I'd happily get rid of them for the peace of mind that will result. I'm just worried about the surgery and recovery and going through a procedure that's going to be strange dating-wise (I'm single) and because most people doing this are like 50. I have full health insurance, and it would be covered, but if anyone you know has gone through this, or you have, I'd really like to hear anything that will be helpful through this process....
posted by anonymous to Health & Fitness (15 answers total) 6 users marked this as a favorite
Not everyone who has a mutated BRCA gene will develop cancer - there are lots of other risk factors that may be as important. If you haven't already, you should talk to a genetic counselor and/or oncologist to get a better assessment of your risk before you do anything drastic.

Best of luck to you.
posted by chrisamiller at 9:09 PM on February 23, 2008

The founder of bebrightpink.com (Lindsay Avner) is pretty amazing. She had the surgery and there have been many articles testifying to her courage and experience. Google her. Good luck!
posted by rglass at 9:23 PM on February 23, 2008

This series in Slate is by a woman who discovers she has the mutation and eventually decides on mastectomy. Best of luck to you in a hard choice.
posted by ottereroticist at 9:23 PM on February 23, 2008

A friendly acquaintance of mine with the same gene had mastectomy with reconstructive surgery, had two children, and then had a hysterectomy. She is connected with at least a few networks/support groups of people with the gene and their family members. You will find other people in your situation if you reach out.
posted by ClaudiaCenter at 10:10 PM on February 23, 2008

Several women on the FORCE message board have had prophylactic mastectomies and would be happy to help you. It's a discussion group for women who are at increased risk for breast cancer. I remember some messages from young women in your situation, but I haven't been on the board in a couple of years.

I have a similar mutation and chose an oophorectomy (removal of my ovaries), which is outpatient surgery in the US. Research suggests it could cut the risk in half for women with a genetic predisposition. I was 44 and already close to menopause, and for me getting my BC risk below 50% was enough. I also have a healthy diet, exercise, etc. However, I understand that you and many other women want to go farther, and I sometimes wonder if I've gone far enough.

People who aren't familiar with BRCA mutations might read this estimate that women with one of the altered genes have a 36-85% risk of developing breast cancer, depending on family history and other factors.
posted by PatoPata at 10:26 PM on February 23, 2008

A friend's wife did this about 10 years ago after watching her mother, aunts, and sisters die of breast cancer. Her mastectomies were covered, as were her cosmetic reconstructions -- but: only one round of reconstructive surgery. Unfortunately, the surgeon did not do a good job of one of her breasts (besides being aesthetically bad -- like so uneven she couldn't wear a bra bad -- it was physically painful and, I believe, infected), but her insurance would not cover a second surgery to fix it. My friend's wife went ahead with it, but they had to pay quite a bit out-of-pocket. So if you do choose to go through with it, find out ahead of time if your insurance will cover you for a second round of reconstruction if you don't get a good result the first time.

Best of luck to you.
posted by scody at 10:30 PM on February 23, 2008

i am 25 and a year ago found a lump in my left breast. i was tested and also have the brca1 gene. it was decided to go for the double mastectomy instead of the single, especially since my mom had breast cancer at 27 and then at 42, and her mom had it twice as well.

so really, only the right side was voluntary, so i can't speak to the double voluntary. the only thing i have to suggest is just think about what is more important- most likely not having to worry about breast cancer now or wait to see if treatment gets better? when i was younger i thought about the voluntary double, but decided to just wait and see if i got cancer. i did and went for the double because i just wanted to get it over with, rather than wait for it to happen again. honestly? i sort of miss my boobs. i'm finally getting feeling back in my chest and the implants feel weird, but i know it'll become normal someday.

young survival coalition is for young (pre-40) women with breast cancer or the brca genetic mutations, and they have pretty good resources.

oh, and if you want to email me, my address is in my profile. i think i have some more stuff from when i had my genetic test.
posted by kendrak at 10:34 PM on February 23, 2008

I have a friend who was diagnosed with breast cancer, had a lumpectomy, and after subsequent testing found out that she had the BRCA1 gene mutation. She has been in remission for a couple of years and is under periodic monitoring by her doctors. She is in her mid-30s and doesn't want to have the double mastectomy or ovary removal that some doctors have recommended. However, she is willing to do so if any invasive cancers show up during her frequent checkups.

She totally understands why people go through those prophylactic operations, but she feels that constant monitoring is preferable to invasive surgery at this point. For you, it would probably be a good idea to talk to some counselors who have dealt with this. You may be a ticking time bomb, but that ticking might be reaaallly slow at this point, so why cut the wires unless you really need to?
posted by bedhead at 10:54 PM on February 23, 2008

My ex-girlfriend of many years ago told me that she had a strong family history of breast cancer (this was before the human genome project gave technical names for this stuff). I heard that she died before she was 30. What you have to ask yourself is are you disciplined enough do do constant monitoring, or which of the "easy ways out" do you want.
posted by singingfish at 11:10 PM on February 23, 2008

I don't have any personal experience to draw on, but you might be interested in Robert Aronowitz's book, Unnatural History: Breast Cancer and American Society. I've only read excerpts, but it deals with perceptions of risk and is chock full of case studies of women in your situation. It's primarily a history text, but his style is very narrative and approachable.
posted by CtrlAltDelete at 6:06 AM on February 24, 2008

Thanks for this post. Although I can't help you answer the question, I recently found out that my two-year-old daughter may have the gene from her father, and this is something that I am dreading. I want to be informed early so I can help her with the decisions she may need to make later.

I wish you the best of luck. My aunt-in-law had an ooverectomy (sp?) and double mastectomy at about your age (which must have been in the early-mid 70s), and she has no regrets that I'm aware of. She has a loving partner and three cats who are her babies. She dated off and on for years but never married, although I don't know if the two things are related, but obviously the mastectomy didn't hold her back.
posted by tracicle at 10:26 AM on February 24, 2008

Here's an excellent article about a 33 year old woman with the BRCA1 mutation who has a double mastectomy. She also had concerns about dating, and they are addressed in the article.

The other articles in that series (The DNA Age) are all really good and worth a read if you want to know more about human genetics and genetic testing.

Best of luck to you!
posted by jenne at 12:28 PM on February 24, 2008

Yikes! Before you spend even another second considering whether to disfigure yourself, proceed directly to your local bookstore or library and get a copy of The China Study (2006) by T. Colin Campbell. Be sure to read chapters 3 and 8 and carefully note the charts on pp. 84-86. You diet is an important determining factor in whether you will develop cancer, much more important than most people realize, and most Americans (and other Westerners) today eat a diet that is very conducive to the development of heart disease, obesity, diabetes, and cancer.
posted by brain at 8:21 PM on February 24, 2008

Brain -- I don't think that study has anything to do with people who carry the BRCA gene, who have up to an 85% greater chance of getting breast cancer because of their genetics, regardless of whether they consume McDonalds or leafy greens.
posted by melodykramer at 4:30 AM on February 25, 2008

brain, i went out of my way to eat a diet that would minimize my cancer risk- low soy, vegan- and i still got breast cancer because of the brca1 mutation. it's not to say that diet doesn't contribute to cancer in part, but for people with genetic predisposition, it's foolish to assume diet alone will be enough.
posted by kendrak at 8:46 AM on February 25, 2008

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