When my second daughter was 4 months old, I found out that I carried the BRCA1 mutation. The diagnosis raised many questions: Were we done having kids? Could we afford another? Did this diagnosis change our decision or our timeline?
And, if we did pursue another child, what then?
Every woman who has been pregnant knows there is a level of anxiety and fear we learn to live with. The moment you realize you are pregnant, half of your brain is in your uterus, worrying and freaking out over every twinge, pain, piece of toilet paper you use.
And once you're part of the mommy world, you learn the stories of your fellow mothers, stories of miscarriages, of defects, of life threatening illnesses or late-term losses. For me, my first pregnancy started in ignorant bliss with each subsequent pregnancy harder both mentally and physically.
This pregnancy, knowing all I know plus being BRCA-positive, has been bittersweet.
My genetic counselor walked me through the idea of preimplantation genetic diagnosis, or PGD. In the most basic terms, couples who know that they carry a genetic predisposition for a disease can undergo fertility treatments and have their embryos screened to see which carry the mutation. Then, only those free of threat are implanted, allowing parents to know they are not perpetuating this disease.
While I appreciate that this is an option for my BRCA sisters and for my own sister if the time comes, I don't know what lies ahead for my daughters. We also had no difficulties conceiving a child, though recent studies suggest BRCA1 carriers may have lower ovarian reserve than our BRCA2 counterparts or non-mutants.
We made the choice to try for a baby before I had my prophylactic surgeries — mastectomy and oophorectomy — after my husband said to me: "You will regret not trying. You will never regret another child."
But, the reality is that I'm coming to the age when my grandmother was likely diagnosed with breast cancer, an age when I need to consider that the lack of screening for ovarian cancer killed my aunt. So, we came to an agreement: try for the 6 months between my screenings and if it didn't happen, I would schedule my surgeries.
So here we are. Excited, scared, and freaking out about not only every movement (or non-movement) in my uterus, but also every lump, bump and pain in my breasts.
I move from thinking about names and giggling about internal tickles to reading stories about other BRCA women finding their cancer during pregnancy or breastfeeding. Logically, I know research shows pregnancy is protective against ovarian cancer and breastfeeding is protective against breast cancer, but it still feels like a roll of the dice when your risk is as high as mine.
And then there’s the judgment. You only need to look at the comments section of any story mentioning Angelina Jolie’s choice of prophylactic surgery to feel the judgment of non-mutants and only need to be a part of a BRCA community to feel the judgment from some of your own when you knowingly choose to conceive without PGD.
Many will say they would never want to pass this mutation on to their children, suggesting PGD or adoption as better options. But they were not my choice for my own reasons — I already had two daughters, these are not early onset cancers that affect children, I did not need fertility treatments, etc.
This was my personal choice based on my personal risk tolerance. It was right for my family right now. My girls are excited; we are excited. We know three is our limit, so I am already planning preventive measures for the post-partum period.
So, I am choosing to look at this pregnancy as life after BRCA. I'm making choices based on my wants, desires and needs before ever knowing about my mutation. I will not let my genetic destiny control my every choice. I choose life, BRCA-positive or not. I choose this baby's and then I will choose mine.
I can only hope the options I have, options that my grandmother and aunt did not have, are the beginning of what my kids will have. I hope the future holds better surgical techniques, better understanding of hormones and maybe even a vaccine for BRCA. So I will hope and hold on to the excitement of one last baby.
Katrina Altersitz Wells had a healthy baby girl. Wells is an editor for medical news publications and blogs at Curiosity Saved the Kat.
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