Wednesday, May 15, 2013

Why I also thought about life without my breasts

Angelina Jolie write about her choice to have a preventative double mastectomy yesterday in the NYT. After losing her mum to ovarian cancer and having discovered (through genetic testing) that she, too, carries a "faulty" BRCA gene that greatly increases her risk of developing ovarian or breast cancer, she chose to have her breasts surgically removed. It reduced her breast cancer risk from 87% to under 5%. 

Angelina (I'll choose to believe we're on first name basis) has six children. She made the decision, her decision, to reduce the threat of dying young and missing out on her children's lives. I think we can all understand that. Nevertheless she's received some criticism (shocking, I know) on account of her sharing her medical decision so publicly. Everyone makes their own choices, but I'm a little surprised that some people are shocked that she'd share her decision with the world.

Angelina (again, we're close) is public figure who, through sharing her experiences, might help another few people out (both women and men can develop breast cancer). We've learned how she grieves the loss of her mother, how she worries about missing out on the lives of her own children, and how on account of her mum's cancer stemming from a genetic defect that she herself inherited, she made a personal medical choice to take preventative action. She explains the procedure, trying, I think, to normalize a surgery that sounds so terrifying, and assures us that it was the right decision for her.

I had the same genetic test done five years ago.

My grandmother, my namesake, passed away from breast cancer a few months before I was born. When my lovely aunt, now cancer-free, developed breast cancer seven years ago, she discovered that the recurring breast cancer in our family stemmed from a genetic defect on one of the two BRCA genes. Most cancer doesn't develop as a result of genetics, but it did in our family. My aunt wrote a letter to me (and I think to other members of our family) suggesting that I get tested myself. This was an uncomfortable letter to receive.

Some people just don't want to know, and that is their choice. But in case you are wondering, in case you are ever faced with the same kind of letter (though I hope you are not), here are my reasons to have the genetic testing done:

I was 31 with a baby just learning to walk. We had just celebrated Alyce's first birthday and we knew we wanted more babies. Lots of babies! Having met with a genetic counselor to learn more about the test, especially about what steps could be taken if it was discovered that I did carry the "faulty" gene, I learned that most women, upon discovering they tested positive for the genetic defect, choose the double mastectomy. It seemed like a very radical step, but I gave it a lot of thought. 

I briefly considered not going through with the test, but in the end I needed to know. I needed to know because if I tested positive I was going to drag Matt to nearest empty hospital room and get pregnant that day.  And then again the next year. I was going to keep breastfeeding Alyce, and then breastfeed our next babies with all that my body could give. I was going to join forces with my body, my potentially genetic-defect-carrying body, and celebrate these breasts the best way I knew how. And then maybe I'd say good-bye to them, farewell to these glorious breasts. 

Basically, I wanted to know if I needed to get knocked up that afternoon.

Matt and I talked about what it might mean to test positive. I might choose extensive monitoring of my breasts and ovaries. I might choose the double mastectomy. We just didn't know.  It was a terrifying decision to go through with the test because it opened up so many possibilities. Would I live my life differently? Was I going to die young like my grandmother? Would my children grow up without a mother? Would I lose my breasts? Would I still love my body? 

I tested negative. 

I still got pregnant pretty quickly after those results (no sense in taking any chances).

For those wondering why Angelina (ahem) chose to share her experience with the world, think about it for a few minutes. Think about how life-changing it is to make life and death decisions about your body. Consider what it would be like to lose your mum as a child, to know that she won't meet her grandchildren, or what it would be like not to have the children you dream of. Spend a moment wondering about how difficult a decision it would be to remove an entire part of your body. This isn't a publicity stunt, this is one woman telling another woman that it's ok to do whatever you need to do to live your life to the absolute fullest. It's not the choice for everyone, but it was hers. Let's let her share that.


There are a lot of things I could have brought up in this post surrounding a women's decision to have her breasts removed. Women's breasts and bodies are politicized and fetishized constantly and this certainly plays a role in the decisions women make. I'm also sure that there are many good reasons not to endure a preventative double mastectomy. This post is simply about why someone might choose to undergo testing, and why he or she might choose to act in the face of a positive test. This is all so very complicated, but I'm offering you just a piece of my own experience. 

Be Well!

1 comment:

  1. wow thank you so much for sharing <3
    i just talked to our aunt about this recently...she told me about the testing as i was unaware....i am considering getting the test done-but am terrified to know the results...for years the fear of getting the family cancer and dying young has haunted me...and that im a mom the thought of not living to see my son grow, and grandchildren grow is heartbreaking...
    i'll keep you posted
    your cuz lis