23%

Before going in to a genetic counselor, I had pegged my own risk at ~25% for reasons I couldn’t fully explain. It just seemed right as a lifetime chance for developing breast cancer, based upon my family history. I didn’t know there were actually risk assessment models designed to do this very thing.

My genetic counselor took down my family cancer history and plugged other details into models designed to calculate my risk of cancer. One model, the GAIL model, can only be used with women 35 years and older. It feels odd to be too young to use all the models possible, but what ones I could use were informative and illuminating.

A few days later, my genetic counselor sent me and my doctor a long letter in the second person:

“You are currently a 24-year-old female, gravida 0, para 0, with your first menses at age 12 and no birth history. You are currently premenopausal and have no history of hormone replacement therapy. You have a history of roughly 5 years of oral contraceptive use (oral contraceptives may decrease a woman’s risk of ovarian cancer by as much as 50%). Your ovaries are intact. [...]“

The main issue is my mother’s young age (35) and her cancer’s advanced stage (4) when she was diagnosed. The general recommendation is to begin mammograms at either age 25 or 10 years prior to the earliest diagnosis in your family. For me, both of those numbers are 25. Next year should be interesting.

“You do meet NCCN guidelines for genetic testing of the BRCA1/BRCA2 genes due to having a first degree relative diagnosed with breast cancer under the age of 45.”

Of course, it doesn’t matter what NCCN says; it’s all about how much Myriad Genetics wants to charge my insurance company (which will bill whatever amount leftover to me). I wasn’t able to do preauthorization so I have no idea how much money I’d be on the hook for until too late. It could be zero or it could be thousands. I have no way of knowing. Right now, it doesn’t matter much to me whether I have a mutation or not. While I probably can’t afford the test, it wouldn’t change a thing for me either way in the immediate future: I’m already classified as “high-risk” and set to undergo annual mammograms and breast MRIs. The only thing a mutation would reveal would be a higher chance of ovarian cancer, which would ultimately lead to needing the ovaries removed before the 45.

“Using the PENN II risk assessment model, the estimated likelihood of finding a [BRCA] mutation is about 8%. This risk would increase to 16% if an affected [with breast cancer] relative were tested.”

90% of breast cancer occurrences are sporadic, happening entirely in people without a family history. You may be more screwed than me! The remaining 10% is thought to have a hereditary component (AKA hereditary breast and ovarian cancers—HBOC). But only half of those are presently identified, and those cannot be tested for like the BRCA mutations can.

Overall, assuming I don’t have any of the BRCA mutations, my lifetime risk is pegged at 23% using the IBIS model. “Lifetime” = 90 years. Typed out, 23% you might think that doesn’t sound “so bad.” However, it is over 2x the normal risk and puts me into the high-risk category. It’s a good thing that I’m actually excited to get mammograms and breast MRIs (which look way cooler than mammograms, by the way)—I don’t think it’s often that someone gets to have their breasts imaged without it being pornographic in the slightest.

Anyway, I’m not really worried or whatever. Which might seem weird to some people, but trust me—I’ve had more traumatic shit happen than this, and I’ve got more important things to worry about. And don’t worry about the BRCA1/2 tests, I don’t need to know the definitive outcome for several years. (Although if you want to give me money, go ahead! I’ll probably just buy socks, though. Sorry.)