Tuesday, December 22, 2009

Why Now?

I'm young. I'm 29 years old, to be precise, though 30 is not too far off. Some of the cancer risk calculators don't even account for subjects this young. My ob/gyn advised me a couple of years ago not to bother getting tested until I was certain I was done having kids, because it's not like we were going to take any serious measures (prophylactic surgery, tamoxifen) when I was also trying to get pregnant/pregnant/nursing.

Let me tell you about my friend "Rowena."

Rowena is just a few years older than I am. When Rowena was about ten years old, her mother died of breast cancer. Many years later, Rowena decided she wanted a little more certainty in her life, and so about a year ago she set herself up for some genetic counseling and testing. Turns out she has a BRCA1 mutation. The cancer risk people recommended a double mastectomy to reduce the breast cancer risk, and oral contraceptives to lower the ovarian cancer risk. "We scanned you and your opvaries are completely clean. We don't take ovaries out of women your age - the drawbacks outweigh the benefits. Let's talk about it again when you're over 40."

So Rowena got her boobs chopped off fairly soon thereafter. Four months later, she developed some odd abdominal pain. Shrugged it off for a day or two, and then went to the ER to rule out appendicitis. Nobody discovered anything to be concerned about. I could kick myself for not making the connection that I should have seen. A few weeks later, she had more abdominal twinges, pretty low down. Maybe a UTI? Doctor ordered a pelvic ultrasound. And then a CT scan.

Guess who had cancer in both her ovaries?

It wasn't yet at the "go get your affairs in order" stage, but this was no Stage 1A, either. Through some combination of excellent doctors, effective treatments, and a good dose of luck, Rowena beat back the cancer enough to turn up with a dwindlingly low CA-125 count and clean CT scan six months later.

This is what scared me into making my appointment. As these things go, Rowena was incredibly lucky. And she did everything right, following the advice of some of the best medical experts out there. But that bit about not worryign about ovarian cancer when you're young? I don't care so much what the statistics say; I know what my friend's reality is.

I know what it means to have your ovaries out at age 30. Increased lifetime risk of heart disease and osteoporosis. Surgical menopause, which is even crappier than the natural route. Definitely no benefit to your sex life. Oh, and no guarantee that you won't get ovarian-type cancer, just as there's no guarantee that a double mastectomy will prevent breast cancer. But the risk drops a whole awful lot.

I could stay on birth control for another decade, give those natural hormones from my ovaries a chance to do whatever good they can do. But I don't think I could look myself in the mirror if cancer rears its head even one day before my 40th birthday, and I didn't do whatever I could to stop it. I'm pretty sure the counselor tomorrow, and the doctor I'll see after I get my test results (if I get test results), will advise against oopherectomy at my age. They will probably have good reasons, and many statistics to back them up. Maybe they'll even change my mind, but it's going to take a lot to talk me out of this.

The emotional mind, the rational mind. Which wins? Which should?

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At 1:22 AM, December 23, 2009, Blogger joshua said...

It is indeed a dilemma. It is a war between the emotional and the rational mind. I liked your post.

This is Joshua from Israeli Uncensored News

 
At 3:47 PM, December 23, 2009, Blogger Lut C. said...

It's a tough decision to make, and I wish you all the strength in going through with it.

 
At 3:35 PM, December 26, 2009, Blogger projgen said...

I can't even imagine. Breast cancer has devastated my husband's family. His mother lost two sisters and her mother to it, and another sister was, thank God, successfully treated. Before there was readily available genetic testing, my MIL and 3 of her nieces - daughters of the two sisters who had died - all went for radical double mastectomies. The nieces were very young, not yet married and the doctors strongly advised against it.

Did they do the right thing? No one will ever know, I guess, but they've all gone on to get married to amazing me and have wonderful children. I think what they did was incredibly brave, and I honestly don't know what I would have been able to do in their position.

I'm sorry you're having to deal with this; I can't even imagine the weight of not knowing/knowing/knowing but not knowing.

 
At 1:06 AM, December 29, 2009, Blogger Abby said...

yeah, rachmana was diagnosed at 31 (and would have been diagnosed at 30 if anyone had been paying attention). statistics mean nothing when you're the one in that third standard deviation.

 
At 12:38 AM, August 22, 2010, Anonymous Mark said...

It is indeed a dilemma

 

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