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September 16, 2007

Comments

grannyp

I find this deeply depressing - maybe for too personal reasons, because most of my BRAC1 family takes entirely the different line. (Namely, take care, get regularly checked, but otherwise put it out of your mind. Yes, you can do that, believe me, give or take the odd scare, you really can.) It sounds like willing self-mutilation to me. As for prophylactic removal of your ovaries... If any of them knew what losing your ovaries early means: they wouldn't. There's not just staying alive to be looked at: there's also quality of life.

Breast cancer is awful, don't we know it. But such terror is as bad: no kind of life at all. This poor - brave - woman sounds like she needed counselling quite as much as she needed surgery.

Meantime we can only hope they come up with real prevention soon, for all of our - our daughters', our granddaughters' -sakes.

If this sounds emotional it is. Sorry, Dina.

Maxine

Yikes, it doesn't half go on, doesn't it? US journalism, never use one word when 20 will do.
But it does hit the nail (as does grannyp's different take) -- what a curse to be hanging over one's and one's families' lives.

Dina rabinovitch

Don't apologise granny p, it is emotional...hope it isn't too upsetting, thought about whether to post it or not, but I think it's interesting, although on the whole I also believe it's preferable to take one's chance checking each month to such drastic surgery.

Deborah

Dear grannyp,
I am saddened by your comments. Prophylactic mastectomy was a rational, well thought out decision for me, after weighing the risks, benefits and alternatives of screening vs prevention. I am an Ob/Gyn physician and did a masters degree program in genetics, so I feel of all BRCA mutation carriers I was in a unique position to be FULLY informed before making my decision. I even consulted with psychologists prior to making my decision to be sure my mental health was in good order. I was concerned that my decision be balanced and rational and not driven by misplaced worry. I actually sought out 2 psychologists prior to my surgery and both affirmed my decision as rational and well thought out and not in any way a pathologic response. I think it is very important to distinguish between pathologic fear and rational fear. Pathologic fear occurs when someone at low risk for a disease cannot be reassured with the knowledge that they are at low risk. Rational fear is knowing you are at high risk and taking action to minimize your risk. People speak alot about fear as a bad thing. But isn't fear actually a rational response to a known threat? If you knew there was an 85% chance that the engine would fail on your airplane, would you really get on it? If there's an 85% chance of a tornado hitting your house tonght, wouldn't you sleep in the basement? Isn't "fear" of being thrown through the window in a car accident the reason we wear seatbelts? And if you somehow thought you were impervious to that potential, and decided against wearing your seatbelt, wouldn't you be the one acting impulsively? Fear about breast cancer never kept me up at night. But the knowledge that I had an incredibly high risk of breast and ovarian cancer definately made me want to act, not wait for a deadly disease for which we do not yet have a cure. And by the way, not a day goes by that I'm not thankful I had surgery. I love my reconstructed breasts. They look and feel better than the natural ones did, and I often wonder why the decision was so difficult, knowing how little I lost and how much I gained. I'm not sure why this point didn't get across to you in the article, but I in no way think my decision is right for everyone. I do think it was right for me, and because of that, I think you are out of line to criticize it. I am offended by the fact that people who know nothing about me apart from that article feel the need to criticize my decision or say it was inappropriate. You are not a health professional, nor are you in a position to say what I did was wrong for me or for anyone else. Only whether it is right or wrong for you. I believe people benefit from hearing other people's points of view, and I am happy for you to share your story just as I shared mine. Just be careful that you don't try to justify your decision by belittling mine.
Sincerely,
Deborah

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