Sunday, August 03, 2008

the lottery

I am not going to bother to go in to where I have been and why I have taken such a long blogging hiatus. I'll save that for a rainy day or never, but something is coming up that I felt like writing about. Who knows if anyone is still reading, but if you are, feel free to give your two cents worth.

Next week I am scheduled to take part in a massive study. If I consent, they will take a DNA sample to find out if I have 'the breast cancer genes'.

If you have the genes, you basically have a 70% chance of having breast cancer and also a much higher than normal chance (I forget the percentage) of ovarian cancer.

If you are positive you basically have three options. You can:

(1) Prophylactically have your breasts removed, and/or your ovaries removed;

(2) Take medications to reduce your risk (i.e., tamoxifen); or

(3) Watch and wait (with frequent and intensive screening).

None of these options sound particularly appealing.

The chance that I have this gene is extremely small, but that being said I can't help but think how my life would be altered if I do.

I think I already know what I would do. I would get pregnant right away and as soon as I had the baby and maybe finished breastfeeding, I would have my ovaries and breasts removed (and then breasts reconstructed).

Who knows what I would really do if faced with the decision, but that was my initial instinct.

But it is even more complicated than that. Even life insurance or health insurance policies become a problem once you have this kind of information, not to mention the change in how you see and live your life. How about going through surgical menopause at 33? Not the most appealing idea.

So what's better? Not knowing?

My doctor was the one who said this was a good idea, and at the time I completely agreed, but now I am getting cold feet.

It reminds me of the way I feel about the lottery. I have never dreamed of winning a 100 million dollars like most people seem to. I have never longed for an irreversible transformation. I want my life, as hard and lonely as it sometimes. It can also be great.

And it's mine.

I am at a loss.


Transcience said...

I'm going to try to avoid weighing in with a lot of numbers, but the most important thing you wrote is "The chance that I have this gene is extremely small". This means the chance that you actually get the associated type of breast cancer is even smaller. So go ahead and get the test -- there's a high chance it will give you some peace of mind.

Take a look at this series that ran in Slate years ago:

Rachel said...

Great article.

L said...

Just stumbled on your blog and my jaw dropped as I read your post. I am a high-risk breast cancer patient as a result of a pre-malignant tumor found in my left breast about two years ago when I was 28.

Can I ask why you're having this test done? I think it's important, despite it being scary. I currently undergo your option #3--frequent screenings (have already had 4 mammograms and I just turned 30) and an oncologist who watches me like a hawk.

It's important to remember, though, that most women who get breast cancer do NOT have the gene (or family history). It's so important to remember that, even if it seems to make things scarier. Just because you don't carry the gene (if that's the case) doesn't mean there's no risk. That's why it's so important to be vigilant, no matter how old you are or what your family history is.

A good website to browse: This site has a great community forum, especially for high risk women. I highly recommend it. Great info, amazing women, and peace of mind.

I'll be keeping you in my prayers. And I'd love to know more about your situation, if you're comfortable sharing. Feel free to email me at

You can read about my breast lump experience at

Hang in there.

with love and prayers from Pittsburgh...

just me said...

I hate this sickness shit.

I want to have the "always healthy" gene.

Rachel said...

I wish there was such a thing as the always healthy gene.

I don't know that I am having the test done. I don't want to spend the last few weeks of the summer waiting on results of a test, which sounds simultaneously reasonable and completely irresponsible and petty.

That is what non-choices masquerading as choices will do to you.

Like l said, even if I do the test and it is negative, it's not like I can breath easy. I can still get breast cancer or bowel cancer or cardiomyopathy or hit by a bus!