Moving on to Ovaries

Today I had my first appointment with a gynecologic oncologist. I liked her a lot – she went through my history and explained the standard procedures for ovarian cancer screening – yearly CA125 blood tests and vaginal ultrasounds every 6 months. Easy enough, though I can’t help but worry about this first CA125 test because… well… you all know what happened with my first MRI.

I’m hanging my hat on the fact that ovarian cancer generally strikes later in life

I'm coming for you next.

than breast cancer, but you can never be too sure so I’m not going to say anything until I get my results.

It was kind of surreal sitting in an office talking to a doctor about having my ovaries and fallopian tubes removed. That measure was so far from my mind 4 years ago when I found out my BRCA status. Because my mom had breast cancer and I never knew her mother, who passed away from ovarian cancer, I was much more cognizant and scared about my breast cancer risk than my ovarian cancer risk. But now that I’ve been there and done that with breast cancer, the reality is I have to think about ovarian cancer, and getting those parts removed is my next step. Ideally, I won’t develop ovarian cancer and I’ll have the surgeries when I’m 32 or 33, after having kids naturally.

Up Next: Fertility

Today was overwhelming.

On the suggestion of my oncologist and the fact that the medical world is unsure of the effects of chemotherapy on fertility, I visited a fertility specialist in Philadelphia. She gave me a lot (A LOT) of information to think about.

So, first off, no one is really sure what the chances are that chemotherapy will cause infertility. A good number (90%) of young women who undergo chemo get back their periods, but having a period doesn’t mean being fertile. Of course, there are several women who do have their own children naturally after chemotherapy, but of course you always have to worry about passing on the BRCA mutation to your child and what that means.

So what’s a woman to do? Freeze her embryos. Freeze her eggs. Use a surrogate egg. Adopt (though, apparently, having a cancer diagnosis in your past makes adopting more difficult, which I did not know before today). The whole process of freezing embryos is extremely involved. I would have to be on medication, inject myself with Lupron, visit a doctor almost daily, and then be put to sleep for a minimally-invasive harvesting session. It is all very expensive, too, costing upwards of $8,000 and even more on top of that to store the frozen embryos until I need or want to use them.

Phew.

Needless to say, this is a lot to think about. Not only am I just a week out from a double mastectomy and freaking out about getting necrosis on my boobs that could cause me to lose skin, now I have to think about paying a ton of money to harvest my own eggs and deal with the possibility that I may never be able to have children on my own. In the words of the brilliant (not) Rebecca Black, “Fun, fun, fun, FUN!” Oh and to add another dimension to this, I have to look to the near future when I’ll most likely have my ovaries removed, so there is a very small window in which I have to get pregnant and have my kids. No pressure, right?

This all needs to sink in for a couple of days before I make a decision, though, as with all decisions I’ve made in the past couple weeks, I feel totally rushed. If I want to do this I have to get on it now, to ensure everything can take place before I start any chemotherapy.

Gah. Throughout the past week I’ve been so happy and upbeat – surgery went well, nodes are negative, I’m comfortable at home with my parents – and all of a sudden I’m again having these feelings of “Why me? I’m way too young to have to deal with this.”

Will it ever end?

Up Next: Healthy Women Removing their Breasts?

BRCA has been a big story in the news in the past week. On our local Fox affiliate (Fox 5, DC, and no… I don’t regularly watch Fox but I do like to watch it in the morning because it’s the only local broadcast) they featured a story about women with BRCA removing their breasts, and I guess the same footage has been shown on several news stations because a recent study came out that says mastectomies and ovary removals reduce cancer risk. Well, duh.

Here’s an article from ABC that features a member of my local DC FORCE community: Mastectomy, Ovary Removal Reduce Some Cancer Risk and Mortality.

I guess it’s good that us mutants are getting media attention. We want to raise awareness and all… But I also hate how the news sensationalizes things like this. OMG! Healthy women are going to drastic measures to beat breast cancer! What has society come to?!?

Unless you have BRCA, you cannot fathom what it takes to make the decision to have surgery. I am afraid that people won’t understand our situation based on the media coverage, and that they’ll say negative things like, “These women are crazy. I would never do that.”

Anyone else have thoughts on this?