Teri Smieja

It may seem weird for a woman who has never had breast or ovarian cancer to think about it as much as I do. In fact, I thought about it so much I chose to have a prophylactic (refers to the removal of healthy tissue & fat) hysterectomy and bilateral salpingo oopherectomy (BSO) in October 2009, just a few days before my 39th birthday. I also had both of my breasts removed during a prophylactic bilateral mastectomy in February 2010.

While I don’t have breast or ovarian cancer, I do have a genetic mutation of my BRCA1 gene which makes my risk of getting breast cancer up to 87% and makes my ovarian cancer risk up to 44% over my lifetime. The average woman has an 8% chance. While science has come a long way, at this point in time, the best option for a woman with this mutation to avoid getting breast or ovarian cancer is to have her breasts and ovaries removed before the cancer strikes. In other words, the best way to fight cancer for us, to not get it in the first place, by removing our healthy breasts and ovaries.

When I first found out about my mutation I was thrown into a world of confusion and fear. Not only was my risk of cancer high but I learned that diligent surveillance would likely not be a good enough option for me. The type of cancer associated with BRCA mutations is very aggressive and reoccurrences of breast cancer are high. I could battle and beat breast cancer, only to have it come after me again and again. The reason the cancer acts so aggressively on those of us with mutated genes is because we are missing our tumor suppressors. Our bodies are missing (in our DNA) the natural ability to protect itself against these types of cancer.

I have a lovely family; a husband and two sons. Of course the idea of going through with these surgeries scared me senseless, but my fear of getting and dying of breast and/or ovarian cancer scared me even more. I value my life more than my body parts. My older son, Steven, is a freshman in college. My younger son, Brady is two years old. What message would it convey to my sons if I decided that I couldn’t go through with the surgeries, if I just couldn’t make myself part with my breasts and reproductive organs, and ended up with breast cancer? Wouldn’t that teach them to value our outside appearance more than our life? What of my baby, who has no understanding of what is going on? How would my husband explain to our young son that his Mommy died because she was too afraid to take the best preventative steps that are available at this time?

As fearful as I was of having my breasts cut off, and my reproductive organs scooped out, I was so much more fearful of the alternative. I began to see the knowledge of my BRCA1 mutation as a gift rather than a curse. There is no denying the choices previvors like myself have to make are incredibly hard, but at least, if we take action soon enough, we do have a choice – something many of our relatives and friends didn’t have. We have the ability to be pro-active in our battle rather than to sit around waiting for cancer to strike. I feel empowered, blessed and brave. Yes, brave, because while at times my insides may shake with fear, I was selfless enough to do what I needed to do, to be around for my family.

For me, worrying only about myself and my struggles through the land of living with a deleted area on my DNA wasn’t enough. I found myself with so much empathy for other BRCA positive women forced to make these choices. Men can and do get this mutation as well, but the implications for women are more obvious, and come with a solution. A difficult solution, but a solution nevertheless. Initially I started blogging as a way for me to help myself make sense of all the fear and decisions that were suddenly placed before me. It didn’t take long for me to see that by sharing openly of myself that it was helpful to other women going through the same thing. My blog, Teri’s Blip in the Universe is something I’ve created that I’m incredibly proud of. To find a way to take an absolutely terrifying situation and turn it into something good and positive has been life changing for me. Later, when I co-created the BRCA Sisterhood group on Facebook with my good friend, Karen Malkin-Lazavoritz, my pride grew by leaps and bounds. To find bring so many people together in a social environment that many of us used daily has been amazing.

Since I found out about my BRCA1 positive status I’ve had a chance to hear a lot of stories from others with the BRCA mutation, along with those with unknown mutations, or simply a family history laced with breast cancer, who decide to be proactive – who decide to be Previvors. I’ve been lucky enough to meet and become friends with Dr. Jonathan Herman, an ob/gyn in New York, and BRCA advocate extraordinaire, and we decided to write a book together. This book is written based on his experiences as a doctor, and mine as a patient and advocate, along with many other stories of mutation carriers. Our target audience is for those in the medical industry – the doctors who are taking care of us. There are so many misconceptions out there as far as the world of BRCA goes, so many things that could be done better. We feel with our combined talents we have a chance of reaching these doctors and guiding them to be a helpful and positive influence for those who find themselves dealing with BRCA concerns.

The point is, we can have a BRCA mutation, but it doesn’t have to own us, it doesn’t have to be an automatic death sentence. The cliché that knowledge is power may be overused (it’s a cliché for a reason, right?), but few others fit better –genetic testing gives us knowledge of a very probable cancer diagnosis and the ability to be proactive in our fight – which is truly the gift of life.