Pandora’s Box

So since this is ovarian cancer awareness month, and since I’ve been telling you people to watch out for the signs (have I mentioned that time I skyped with Kelly Ripa?), I thought I’d go a step further in my quest to set a good example and tell you about the time I had my genes tested.

You see, there are these things called BRCA genes, and sometimes they’re screwed up. Mutated, I believe, is the technical term. So having these mutated genes is not cool. According to cancer.gov (now that sounds like a fun website if I’ve ever heard of one), having these mutated genes makes a woman five times more likely than the average woman to develop breast cancer, and 15 to 40 times more likely to develop ovarian cancer. And if that wasn’t exciting enough, the gene mutations are also linked to cervical, uterine, pancreatic and colon cancer.

Awesome.

Years ago my OB/GYN told me that since my mom had ovarian cancer at such a young age, I should have a special ultrasound on my ovaries every year starting when I was 30. (As an aside, I want to mention that this ultrasound is only done on people with family history of ovarian cancer. It is not a routine test – there is no standard, accurate test for ovarian cancer, which is why it’s absolutely critical for women to be familiar with the signs and symptoms.) So, when I hit the big 3-0 this spring, off I went to have my ovaries checked.

While I was there, my doctor suggested doing a test for the BRCA gene mutation as well. You know, since I was already there and everything. I had heard about the BRCA test, read brochures about it in the doctor’s office before, and had done a little internet research (shocking, I know). I even figured it would be prudent to be tested for it at some point. However, I wasn’t planning to do it that day… just someday, after I had gotten around to all the other things on my to-do list like climb Mt. Everest or sky-dive. (Who am I kidding? We all know there’s no way on earth I’d do either of those things.) But I was already there and I was at the advanced age of 30, so I figured I might as well do it. I signed a few forms, filled a few vials of blood, set an appointment to get the results in six weeks, and I was off.

I was not, however, prepared for the complex emotions having that test brought out in me. As I left the parking lot, I called Jenny to tell her about my appointment, and I remember saying to her, “I feel like I just opened Pandora’s box.”

I didn’t really think I had the gene mutation. We don’t have any other instances of breast or ovarian cancer in our family, so while we can’t say for certain that my mom didn’t have it, my highly-qualified (I got my MD on Google, thank you) guess is that she didn’t… that her disease was a fluke, and she was in the lucky 1.4 percent of women without the gene who wind up with ovarian cancer. But like I said, we don’t know.

The thing about the BRCA gene mutation is that once it’s identified, women who have it suddenly have to make a lot of very difficult decisions. Because the likelihood of cancer is so high, some women choose to take preventive measures like having a mastectomy or an oophorectomy (which is a fun way of saying having their ovaries removed). The idea of making decisions like that freaked me out.

My initial reaction to the “what if” was to say “yank those puppies out,” but really, not having ovaries anymore is a pretty serious situation for someone 30 years old, and I’ve read enough blogs written by women fighting breast cancer to know that a mastectomy is not a walk in the park. And if I did have it, what did that mean for my sister? For my daughter? It was a lot to digest.

Fortunately, six weeks later, I went back to the doc and she announced that I was perfect. I don’t have the gene mutation. And while this doesn’t mean that I’m not at increased risk (I still have to have that ultrasound every year), it does mean that my ovaries can remain right where they are for the time being.

And I am so glad.

So there you have it, more than you ever wanted to know about my reproductive system. But I wanted to bring up the subject again (I hope you’re not tired of hearing about ovaries, because seriously I am going to keep preachin’!) before the end of ovarian cancer awareness month. Once again, I encourage all of you to visit the Ovarian Cancer Research Fund website and familiarize yourself with the signs and symptoms. It’s so important that you know your body and listen to it.

Thanks for indulging me and my soapbox once again. And now back to our regularly scheduled programming.

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16 Replies to “Pandora’s Box”

  1. The right thing to do regardless of the outcome. Now, you can rest more easily. Pandora, and Kathy would be proud – and glad.
    UP

  2. So glad you get to keep your ovaries and more importantly that you don’t have the gene!

    Now about this “advanced age”…seriously…30 is advanced age! I really don’t like the sound of that 🙁 But realize that we are getting old and do need to think about these risks!

    Erin

  3. I am happy for your outcome and your taking care of yourself!! Too many times we need things and put off for the million other things we have to do. I myself am having to have a mammogram because they see something they don’t like every 6 months for the past year so far. I am only 34. Hopefully all is well and continues being well for you!!!

  4. Glad you don’t have the gene. I’m also glad you are getting the ultrasounds. I have had a few myself (family history also). Which reminds me….I’m due.

  5. Obviously I am QUITE happy you don’t have the gene! When we talked about it, I remember asking you if you would get your ovaries removed if u tested positive, and I was all “cause I’d get those puppies ripped out in a heartbeat” and you were like, “Yeah, I would pretty much do anything to avoid ovarian cancer.” or something like that. I think it’s important that we all understand that you are looking at it as someone who has already lost once to this disease, and who knows how much there is for your loved ones to lose. And that we all take your exhortations (love that word) of knowing the signs to heart!!

  6. I’m proud of you for having the test done. Like you, I would have my ovaries, boobs, foot, right arm, ect removed in a heartbeat if need be. UP is right, Mom would be proud and glad… Not just of having the test done but of telling others about the signs… and pretty much everything you’ve ever done in your whole life, too.

  7. That is exciting news! My mother is a 7 year survivor of stage 3 ovarian cancer. She had the test done and just told me that she does not have the gene. That was such exciting news! I know how relieved you also must be. Keep spreading the word about Ovarian Cancer, you’re doing a great job!!!

  8. Thanks for talking about this — I wish there had been gene tests and ultrasounds in 1979 when my grandmother died of this awful disease at the age of 49. And I wish there had been someone talking to her about recognizing the signs and symptoms, which she didn’t. It’s cool that you can do such a great service for your readers and honor your mom at the same time. And I’m glad your genes aren’t mutated!

  9. wow- I would have been freaking out too. What a big decision to have to make if it had come back positive. I’m so glad it didn’t though. whew!

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