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Saturday, 20 June 2009

to keep or not to keep

Well, thankfully not a relevant question.

In this weekend's newspaper, following a documentary which will air on TV later this week, there is a story of this young woman (30) who had a mastectomy. She didn't do it because she had breast cancer, but because she had a higher chance of getting it (I think 50%). Her father took part in a research about breast cancer, something about having or not having the gene. Once he was found to be a carrier, she was also tested and found to be a carrier too. Of course it wasn't an easy decision for her to let go of her perfect breasts, of her femininity and mummyhoodness (but how will I nurse a future baby, she asked the dr, whose reply was - what's better, baby not nursing or baby being an orphan), but she did in the end (and had her breasts reconstructed).

Happens to be that my father also participated in such a research, and was also found to be a carrier of the gene (BRC2) and thus we, his daughters, were called to be tested.
First question is do you test? Do you want to know even if it might mean you have this gene and therefore your life won't be the same? Maybe you prefer not chancing being stressed out about it and just not test? Out of five girls, three of us were tested and found to be in the clear (me included), one was tested and found to have the gene and one refused to be tested, doesn't want to know (and sadly I would have to say that statistically she probably has a higher chance of having this gene). Personally I couldn't live with not knowing, because that would make me think that I definitely have it, but I have to accept her prefering not to freak out if she does have this gene.
Then of course (assuming you are unfortunate and do have the gene) there's the question of what do you do. Do you carry on living your life as you did the day before and the day before that, or do you take some life changing precautions. Do you remove your breasts? What about your ovaries? Does it matter whether you have already had a child and/or breast fed one? And what about body image which might change dramatically after having your breasts removed (even if they are reconstructed)?
The sister of mine who was found to have this gene, had (after a long and hard year battling it) her ovaries removed, but couldn't do that to her breasts. She won't even though she is highly recommended to do so.

I too don't think I would have been able to have a mastectomy. I know that as long as I didn't actually have cancer, that I couldn't/wouldn't do anything about it [somewhat similar to my sister who won't be tested]. No doubt that it would always be in the back of my mind, but to remove my breasts??? Not that I love that body part with all my might, but it is still part of me, part of making me a woman, not to mention that I would really love to nurse my kid. I do take into account many stories I've heard about how it is not always easy, how you don't always have enough milk, how the baby doesn't always "know" how to suck from the breasts and how for some mother's this is a painful ordeal that they are just glad when baby is weened. But I would still love to give it a go, and having a mastectomy, well I would have to kiss that dream goodbye.
Neither could I have, at this time in my life, my ovaries removed, for obvious reasons...

And this woman from the paper - wow, what a decision to make!


battynurse said...

That would be a hard decision to make. I'm glad you tested negative for it. It's hard to say what one would do in this situation unless you were actually in that situation. I can sit here and say that of course I'd have the mastectomy (I'd never have to wear a bra again!) but who knows how I'd feel if that was the reality.

Genkicat said...

Wow! That must have been scary for you, to learn that you might be a carrier - and how devastating for your sister who was found to have the gene. I have no idea what I would do, except to say that I'm pretty sure I would want to know if I had the gene. Do you think your other sister will change her mind?

Dora said...

Sorry I've been a bad commenter lately.

First of all, so glad you tested negative.

Personally, I don't think it would be a hard decision for me. A painful decision, and a hard thing to go through, but I don't think I would waiver. Having seen people die of different kinds of cancer, I would be aggressively proactive. Those numbers are too high to mess with. I would definitely test. If I tested positive, I would have my breasts removed. At this point in my life, I would also have my ovaries removed. If I were younger and hadn't had children, I would attempt egg retrieval and cryo, then have my ovaries removed.

And, yes, I hope to breastfeed, but I agree with that woman's dr. Better to forego breastfeeding that to have your child watch you go through cancer treatments and possibly die.

We are all so much more than our parts.