Our children deserve better. Bryna’s YWSBC story.

The following post is from Bryna Siegel Finer, who writes for Blogging BRCA.  Bryna is a mom, writer, and advocate for women and men in the BRCA community.    

Everyone on my father’s side of our family has either died from, survived, or is attempting to surgically prevent breast and/or ovarian cancer – almost all of us are BRCA2 positive.  When I met my husband in 2004, I knew about my BRCA status.  In fact, on our first date, we talked about breast cancer rather openly: his sister and mother’s survivor stories, my plans for prophylactic surgeries.  Strange first date conversation, but I think it was one of the ways we knew we were meant for each other.

As I got to know Dave’s family and more of their cancer history, and as we planned to get married and began discussing the possibility of children, I asked Dave to get genetic testing.  We learned that he is positive for the BRCA1 gene.  We sought genetic counseling in order to determine whether children would be a wise decision for us.  Our counselor explained that it wouldn’t be wrong for us to have a child, but there would be a 75% chance that the child would have one of the two BRCA mutations, along with a chance that the child could have both.  Research about people with both mutations is rather slim, and this idea made me really nervous.  What sort of medical future would I be knowingly condemning my child to?  Up to this point, all of the women in my family who are BRCA positive had their children before they knew about their gene mutation.  But Dave and I were thinking about going into this knowing that we could be putting our child at risk.

Our genetic counselor told us we could do embryo selection – our embryos would be tested for the BRCA mutations, and then we could have one implanted that was not positive for the gene.  Now, I believe in a woman’s right to choose, but I could not imagine choosing an embryo and not knowing what happened to the others.  Not to mention, choosing a BRCA negative embryo does not guarantee a 100% healthy baby.  A zillion other things could be wrong.  So embryo selection was not for us.  We decided we wanted to have a baby without any medical interventions, and that we’d play the cards we were dealt if we learned later that our child has a BRCA mutation, or any other illness for that matter.

I’m so happy we didn’t choose an embryo.  We have a brilliant, charming, and loving two-year old boy, Theo.  He is the light of our lives.  And when I think about the possibility that we might not have chosen him – we might have chosen a different embryo – my eyes well up imagining not having him in our lives.

When I read of the YWSBC campaign to encourage Congress to fund research into preventing breast cancer, a chord in my heart was immediately struck.  For the last few years, I had been thinking about what we could do help our son when he’s older – to make sure he’s screened while we wait for the cancer to come, to get him treatment if he does develop cancer.  It never really occurred to me that our best recourse might be to help researchers find a way to prevent cancer from occurring in the first place.

So I took up the cause and wrote to my senator.  I chose to do so on stationary that I purchased before the bilateral mastectomy I had eight months ago after my diagnosis of DCIS.  The stationary is imprinted with small lettering that says, “Thank you for supporting our family. It means so much to us.” I sent them to anyone who donated to FORCE in my name, or who made us a meal or helped us in any way during my surgery recovery.

My note to Senator Bob Casey of Pennsylvania reads:

Dear Senator,

I purchased these thank you notes to send to people who donated to breast cancer research after I had my mastectomy in January.  I am sending one to you in advance for doing anything you can to support research into breast cancer prevention.  Most of my family is positive for the BRCA gene, which puts us all at high risk for breast and ovarian cancer.  So far, too many members of my family have died from this disease.  Because my husband and I are both positive for the gene, our two year old son is at risk too.  I’m asking you to support research into breast cancer prevention so that our little boy never has to worry about this disease affecting him.

I hope he reads the note and gets the message – for our son’s sake and for the sake of all children of BRCA carriers.  Cancer prevention might be too late for many of us, but it’s not too late for our children.

To participate in YWSBC, go here for details.