I am waiting for bad news. Or good news.
It’s not something I’m very good at – waiting. I can’t just put things I’m worried about out of my mind and get on with the day.
What I’m waiting for is a test result. In a week or so, my 29-year-old son will learn if he inherited the BRCA1 genetic mutation from me. The mutation is riskiest for women, but men are affected too: the risk of male breast cancer rises from a tenth of a percent to 8% and the chance of prostate cancer rises too. Both men and women have increased odds of pancreatic cancer and melanoma. Perhaps worst of all, he could pass it on to a daughter. The odds I’ve saddled him with this mutation are 50/50.
If the test is positive, I will feel sorrow about passing this difficult gift on to him, but not guilt. BRCA hadn’t been discovered when I had him. But he will have to decide whether or not to have children, knowing they also have a 50% chance of inheriting the gene.
With celebrities like Angelina Jolie going public with her BRCA status and the recent Supreme Court ruling against Myriad Labs’ patent on the gene, awareness is rising rapidly. One result is that more and more young women learn their status before starting families. Many women I know are still choosing to have children. After all, it’s not certain those children will be girls and it’s not certain they will inherit the gene. And it’s not certain that if they inherit the gene, they’ll get cancer. And it’s especially not certain that if they get cancer they’ll die from it.
But what if you could find out in advance whether an embryo has the mutation or not?
This BRCA2-positive Seattle woman had the opportunity to find out. She froze embryos prior to her own breast cancer treatments in the hopes of having children afterwards. Before implanting them, she was given the option to learn whether they carried they mutation. She chose to implant them without testing. At first, it seems like an insane choice. How could she burden a child with it if it could be avoided so easily?
But I have great empathy for her and support her decision for three main reasons:
First, if my mother had been able to eliminate the “bad” embryos. I would not have been born. I don’t know yet whether either of my two sons has the mutation, but the thought of not having had either of them in my life is devastating. I lost a child to miscarriage thirty years ago and to this day I still wonder what he or she would have been like.
Second, time and science do not stand still. A child born today won’t have to deal with BRCA issues for at least 30 years. Think of the advances of the last 30 years. New research on treating and preventing cancer are in the news daily. My heart broke when a friend told me her young daughter had asked her “When I grow up, will I get my breasts cut off like you, mommy?” I believe she will not. There will be far better options available to her. She won’t face the same wrenching decisions her mother or I did — or face the same fate my mother and grandmother did.
Lastly, we all have challenges to face in life. It’s natural to want to protect your child from harm whenever you can. But challenges and hardship connect us to each other, bring us out of ourselves and show us what we’re capable of. They help us see what is human and precious and what is trivial. BRCA is a difficult gift. Having a hysterectomy and double mastectomy was no picnic, but I’ve learned so much, gained new insights and made so many friends I never would have met otherwise. It’s led me down paths I never expected to walk, but in spite of it all, I love my life and I’m glad I was born.
Eva Moon wrote and performs a one-woman musical comedy about her BRCA experiences called “The Mutant Diaries: Unzipping My Genes“ soon to be released on DVD. Click here to find out how to order it for yourself or a loved one going through a life-changing challenge.
