How Far Are You Willing to Go to Prevent Cancer?

In 2017, I had both of my fallopian tubes removed, in an effort to lessen my risk of getting ovarian cancer. Recent research has found that the cancer typically begins in the tubes, not the ovaries, and so removing them can lower your risk of getting it. As someone with a family history of ovarian and other reproductive cancers, I didn’t want to take any chances. But it wasn’t until this year, almost two years later, that I was finally able to undergo genetic testing to determine if I, personally, was at an increased risk.

My husband worked at Mayo Clinic, so I made an appointment to see a genetic counselor there. We went over my family health history as best we could (my mom is adopted), and then she sent me off to get my blood drawn. From there, I had nothing to do but wait. Thankfully, it wasn’t for too long; in less than two months, my genetic counselor called and asked me to come in to go over the results. That tipped me off right away — obviously, something had been found, because if the tests came up clean, then she would have just told me over the phone. But still, having to wait even longer to find out just what gene, exactly, I had was making me incredibly nervous. Was it BRCA? Or another cancer gene?

The day finally came, and it turns out, I have a cancer gene that researchers didn’t even know existed until a few years ago. I have a RAD51D mutation, which means that I am at an increased risk of developing, at the very least, ovarian cancer. Because the gene is so newly discovered, it’s not as certain if it increases the risk for other cancers, but as my genetic counselor explained, it seems likely that it will eventually be found to increase the risk for breast and other reproductive cancers as well. For men, there is a likely increase of prostate cancer risk. And there was a 50 percent chance I would have passed on this same gene to my children as well, the knowledge of which was the hardest for me to take. Even though it’s something I have absolutely no control over, I still feel guilty and horrible knowing that my kids might have this hanging over their heads also.

Ovarian cancer, honestly, scares me. It’s not as well known as breast cancer, but it’s far deadlier; the symptoms are so vague, that many women don’t even realize they’re sick, and by the time the cancer is detected, it’s typically already reached stage IV. It’s the deadliest of all female reproductive cancers — approximately 22,000 women are diagnosed each year, and of that number, about 14,000 of them will die from the disease. So knowing I’m at an increased risk of having this disease is scary as hell. I don’t want to die before my kids have grown up. I want to have the opportunity to grow old with my husband, to see our kids get married and have families of their own.

So off I went in the next step of my journey, visiting a gynecological oncologist to determine what my options were. And unfortunately, it wasn’t easy to decide what to do. There are several choices I could make, and as my doctor explained, they were all good ones, with pros and cons for each. I could do nothing, and come back every six months to have an ultrasound and a blood test to see if there are any changes on my ovaries… but this wouldn’t necessarily be indicative of any cancer, and it could be missed. I could go on the birth control pill, which actually does decrease the risk of ovarian cancer. The downside there, though, is that it increases the risk of breast cancer, and I’m already at increased risk there. And then, I could have my ovaries removed. This is the recommended course of action for women who have tested positive for this gene, are over the age of 40, and no longer want any more children. The downside is that it will mean going into early menopause. I could have hormone replacement therapy, but it isn’t perfect, and it could increase the risk of heart problems.

This was all a lot of information to take in, and it’s a big decision to make. I felt like my life was literally hanging in the balance. My doctor assured me that I could take a few months to think about it, though, and so that’s what I’ve done. And now, a few months later, I’ve decided to have my ovaries removed. I’m not thrilled about going into menopause, or about the increased risks of heart disease. But there is hormone replacement, which I’ll probably take advantage of, and with a healthy lifestyle, my doctor assured me the heart disease risk can be drastically lowered. I’ll be 40 in five years as it is, so why wait until then? I might as well just get it done.

It’s nerve-wracking knowing I’ll be going through menopause in my 30s. And it’s frustrating, waiting for more information about this gene to emerge. But I’ll do all I can to make sure I’m here for my family, as long as I can be.