I’m sitting with my mom in my childhood living room on a chilly day in May, watching a movie. Her hair has started to grow back since the last time I saw her. I tell her she’s “giving Sinead O’Connor,” and she pretends not to hear me. This is a common move when she doesn’t want or doesn’t know how to respond. We talk about her mastectomy coming up in a few weeks: whether she’s getting implants (yes), if she likes her surgeon (must not have heard me), whether she’ll have to stay overnight (probably, since my parents live two hours from Cleveland). We talk about me, how I’ve been keeping up pretty well with working out lately. Mom says, “When this is all said and done, I’d like to start doing yoga or something.” 

I think we’ve all heard a version of that sentiment from a patient, or even said it ourselves. Five years after learning I was BRCA1 positive, I have theoretically made good headway in having my family tested and establishing my own preventive care. I have always felt fortunate to be positive for a gene with well-documented cancer risks and definitive management guidelines. I pride myself on being a good planner, as well as a rule follower. I know that generally, if I stay on top of my screenings, the odds are I will not die of cancer. And yet. After having the rug pulled out from under me by BRCA twice already, it’s getting harder to envision a time in the future when I am not on guard.

I’m pushing 30 now, and I’ve gone through some more of the classic hereditary cancer canon events: being called back for a biopsy, considering surgery options, worrying about insurance coverage. I found out the hard way that even if your state has a law requiring no out-of-pocket costs for high-risk screening, those protections don’t apply to a remote worker with out-of-state insurance. My most immediate hurdle is deciding whether to have children. BRCA isn’t the only reason to lean “no,” but I can’t say that not passing this on wouldn’t be a perk. I’m not in a place now where I can quite give up the idea of being a mom, though, so the indecision leaves me in a holding pattern of not being able to plan when to have a mastectomy.

That being said, I was still plugging along pretty well. Then my mom got breast cancer. Triple negative. ( Insert your favorite expletive here.) Even though I theoretically knew the risks, I had unconsciously assumed (naively) that if my mom got cancer, it would be found at a very early stage, removed easily, and then she could go ahead and get a mastectomy for good measure. And it was early stage, but the type meant six months/16 cycles of chemo. It meant Mom being sick and losing her hair; the whole nine yards. And the thing is, we did catch it early. My being born and becoming a genetic counselor and deciding to be tested probably saved my mom’s life. Even so, I’m still kicking myself: for not pushing her to have a mastectomy before this, for thinking “maybe our mutation’s penetrance isn’t actually that high.” Although I knew the worst-case scenario, I’d psychologically distanced from it. 

Understanding risk cognitively is not the same as emotionally integrating it. Professionally, I know this. Personally, I’m realizing I still have some blind spots.

I have always considered myself a “decisive” person. As a GC, I am just about as empowered as a patient could possibly be, but I’m still coming to terms with feeling stuck and maybe even with the fact that I can make what I think is the best decision possible, and still end up wishing I had done differently. GC competence hinges on being comfortable communicating uncertainty. As we move into the era of precision medicine, I think GCs need to be ready to talk about what comes after the diagnosis. We often know the answers to “should I have genetic testing” and  “what are management options,” but I think we far less often know how to address “what is the right option for me” and “how do I live with this?” 

When mom talks about what she wants to do “after,” she means her cancer treatment. I understand, but now it’s my turn to pretend not to hear her, because I don’t know how to respond. Her surgery will be done soon, but what’s next? I mentally push away the worst-case scenarios. For now, we finish the movie. I let her fuss over me. She doesn’t get as many chances to mother us now that we’re out of the house and with her being sick. I hope she can get back to what she enjoys, and maybe even try yoga, when this is all said and done.

 

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