Are My Boobs Going to Try to Kill Me?

Grab a cup of coffee and let’s talk about our Girls.

Last year, my sister (my only surviving sibling) was found to be harboring an alien in her chest – breast cancer. Her cancer was caught super early – it was about the size of an early green pea, you know, one of the little ones. Thankfully, mercifully (insert your own adverb of relief here), they were able to get it all with a lumpectomy and radiation.

Upon her diagnosis, Chele had a genetic panel run. She had tested negative for BRCA1 and 2 years previously and had thought herself safe from breast cancer. Turns out that BRCA1 and BRCA2 are not the only genetic mutations with demonstrated links to increased rates of breast cancer in women. There are actually 72 genetic mutations with links to increased risks of breast cancer, according to BreastCancer.org. Hurray, right? Chele’s test results showed that she had one of those mutations. At her urging, I also had a panel run. I have two of those mutations.

Filth.

As you might expect, I was unsettled by those results; but, I put it in the back of my mind until it was time to have my annual exams. So that I can remember what month I have those done, I do them in my mother’s birth month – May. Check your calendar. Guess what month it is.

Because it is now time for me to think about my mutations and their ramifications, I’ve been a little on edge this month, particularly this week when I was scheduled to consult with a geneticist to get a better idea of what my actual risk for breast cancer is.

According to the National Cancer Institute, some 12.9% of women born in the US today will develop breast cancer at some point in their lives. That is one woman in eight. Take a minute to let that soak in then look around at seven of your friends. Statistically, it’s going to be one of you. Having genetic mutations increases that risk. My sister’s mutation increased her risk by up to 20%. My mutations increase my risk by up to 20% EACH. So, obviously, my question for the geneticist was: what is my real risk for developing breast cancer? How likely is it that my boobs are going to try to kill me?

As it happens, geneticists are about as forthcoming with concrete answers as are Magic 8-Balls.

To be fair, they just don’t have the answers to give, though. It is believed that my mutations don’t have a cumulative effect, meaning: I don’t have a 12.9 + 20 + 20 percent chance of developing breast cancer. There is some overlap with the population groups and, honestly, there just isn’t enough data for scientists to really know. My risk is higher than 12.9%, but lower than 52.9%. That’s not a comforting range.

You should know this about me: I am Henny Penny. I prepare for the worst-case scenario, which makes those who love me a little crazy sometimes. However, for me, that means that I have planned for the worst and anything less than that horrific outcome is covered. It’s how I cope with things. Soooooo, in preparation for my visit with the geneticist, I had figured out that if my real risk factor was over a certain percentage, I was going to proceed with a prophylactic mastectomy.

Big leap, right? I know. However, in the event that there is a 60% chance that The Girls will try to murder me, they have to go and I’ll get new ones with squeaky toys or air bags in them. That’s all there is to it.

The thing is, breast cancer, while terrifying as hell, isn’t necessarily the death sentence it was when I was young. In talking with the geneticist, I learned that of the four kinds of breast cancer, the one I am most likely to develop as a result of these mutations is the same kind my sister developed – a non-aggressive, very treatable (I hate this word in cancer discussions) kind that is fed by hormones. In other words, it’s probably not time to evict The Girls just yet.

For now, we will proceed with mammograms alternating with MRIs every six months, keeping a close eye on everything and foregoing any hormone replacement therapy for menopause. When there is evidence of a murder plot afoot, then we’ll evict The Girls and go for the squeaky toy models.

The problem with all of this is that it really is just a best guess based on the data we have at this time and the data is not where it needs to be. Researchers just need more of it. To get that, more people with cancer-linked genetic mutations need to be involved with the Inherited Cancer Registry. However, because there are no national legal standards protecting against discrimination by insurance companies based on genetic test results, many people are reluctant to be tested regardless of their family history of cancers. Other people just don’t want the burden of knowing they are at increased risk. My family, for instance, is a train wreck of various cancers; but, my sister and I are the only two who have opted for testing. Trust and believe that I understand why others are reluctant.

Still. This Henny Penny believes that knowledge is power and that the freedom to plan for a potential disaster is a gift; so, I had the panel run and am participating in the registry in the hopes that whatever happens with me and The Girls will increase general knowledge around inherited cancers. Even if I don’t benefit, someone else may and I’m good with that.

The 8-Ball had no concrete knowledge to share, but I still got some reasonable advice. That’s about the best I can hope for at this point.