When my friend Sue met her future husband, she was eager—and nervous—to tell her parents she had fallen in love.
“There’s good news and bad news,” Sue began. “He’s Jewish.”
“Oh, Sue!” Her mother exclaimed. “But we’re Catholic! Nothing against him, it’s just that we’re so different. It will never work.”
“Oh, that was the good news,” Sue replied. “The bad news is that he’s a Democrat!”
I, too, have good news and bad news, though it is not so charming as Sue’s (whose family, by the way, grew to adore her husband).
First the good news: I have been published in Salon! Making it into a major publication is a dream come true.
The bad news is that the essay is about what some, but not many, people already know: I carry the BRCA mutation. This is the genetic defect that puts women at high risk for breast and ovarian cancer. It was made famous by Angelina Jolie, who wrote in the New York Times two years ago about her decision to surgically remove her healthy breasts to reduce her BRCA cancer risk. Just last week, the Times published another piece by Jolie about her recent decision to remove her ovaries and fallopian tubes to avert ovarian cancer.
Jolie’s first announcement came soon after I had finished nine months of treatment for a rare and aggressive form of uterine cancer, which was fortunately caught before the cancer had spread. My treatment included surgery (a complete hysterectomy, so the deadlier ovarian cancer threat no longer looms), radiation, and—just in case—six cycles of chemotherapy.
I had known well before my diagnosis that the BRCA mutation resided in a distant branch of my family tree and had mentioned it to my doctors, but did not pursue testing at that time. Two years later, my uterine cancer’s unusual cell type and the family history I had disavowed led the surgeon to suspect BRCA in me, not just in cousins I barely knew. So I met with the genetic counselor and went to the lab to have my blood drawn.
I got the results a week before my first chemo session in 2012. Sure enough, I tested positive for the BRCA2 mutation (a slightly less risky variant than Jolie’s BRCA1).
So I have something in common with Angelina Jolie! But there the similarities end, for I have chosen high-risk surveillance over prophylactic mastectomies. It’s actually the more common choice among BRCA-positive women, but you wouldn’t know it given all the attention to radical surgery to remove healthy breasts. Neither choice is easy or risk-free. I felt I could contribute to an important conversation by writing honestly about what it is like to know that one’s body houses a potential time bomb as well as what went into my decision to go with the less-heralded surveillance option. And I am grateful that Salon agrees.
My BRCA mutation has been there all along. I have known about it since Halloween 2012. And now you know it, too. It is perhaps not the best way to find out, but I trust you will understand.
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Please click here for the link to my Salon piece. I’ll be curious to hear what you think.
Your story shows that neither choice is easy, and that neither choice gives you relief from the unknown. I believe that deep down we always know the right or best thing to do, and that when we’re ready, we will do what needs to be done. Wishing you the best.
Thank you, Kate. I don’t know how you found me, but I’m glad you did, because I really like your blog. I’m also glad you grasped the complexities of my choice, and the importance of tuning in to one’s intuition.
It is very easy for people to offer opinions when they haven’t had to face making a decision like this for themselves. Each of us faces our life, our bodies and our mortality in a unique and individual way. Over the years I have received so many opinions on such personal life passages and when I have followed others ‘ advise, over my own counsel, it had most always left me ambivalent. But when I allow myself to hear my own true voice, and then trust that voice, I have felt better about my decisions. It sounds like you found your voice and most importantly listened to it! It doesn’t matter what others think, only you know what is right for you. Yes you may regret this decision, but you might have come to regret the other one as well.
Thank you for sharing your story. I tweeted out the Salon piece as well as your post on Shrinkrapped
“But when I allow myself to hear my own true voice, and then trust that voice, I have felt better about my decisions.” Heidi, you are so wise. I not only appreciate your always thoughtful and kind comments, but that you get it. Thanks for sharing.
Your post reminds me of the Zen story about not knowing if something is good luck or bad luck until you know what follows. Whatever the response, it seems like a highly personal decision. Best wishes on your surveillance. I have had squamous cell moles removed from my face and spend quite a bit of time monitoring my skin. Trying to do this for internal changes seems much more difficult.
Thanks, Jilanne. The Zen story is apt. I think of my piece as a meditation on uncertainty. There is something about what we can’t see that makes it particularly alarming, and I appreciate the position you’re in, too.
Thanks Lorrie for eloquently expressing what it is to be faced with a choice between two unwanted alternatives. And Kudos to you for your courage to find out about the gene. I’ve always believed it is better to know than not to know, nonetheless the phrase ignorance is bliss comes to mind in my weaker moments…
Thanks, Nancy. I didn’t find out about the gene till cancer forced the question! And yes: Knowledge is power, but ignorance is bliss!