September 28, 2016: Previvor Day for BRCA Carriers

Cynthia Bailey, MD|September 28, 2016

Previvor Day is appropriately sandwiched in between 2 big Cancer Advocacy months: September is Ovarian/Prostate Cancer and October is Breast Cancer Awareness Month.

These are common cancers, big Western World killers, and some people have a genetic predisposition to them. A genetic predisposition means they hold in their genes an even higher risk of suffering from one of these cancers over every other human adult in the Western World. When those who are genetically predisposed take definitive steps to lower that cancer risk it is called Previving. 

The term was coined in 2000 by the cancer advocacy group FORCE, which stands for Facing Our Risk of Cancer Empowered. FORCE represents the Heridtary Breast and Ovarian (and Prostate) Cancer Group, of which I am an honored genetic mutation carrying member. In 2007, Time Magazine rated the word 'Previvor" as #3 in terms of the top 10 buzzwords of the year. I still had never heard the term until I got my pre-destined breast cancer diagnosis. Had I known...

In 2013 I was diagnosed with breast cancer, in both breasts. This is when my genetic destiny was fortold, thanks to professional genetic counseling and a great cancer team here in Northern California where I live. I learned that I was a BRCA1 gene mutation carrier.

After my Breast Cancer was treated to the satisfaction of my oncology team, I went on to take a ‘definitive’ step to previve ovarian cancer. Ovarian cancer is probably what killed my maternal grandmother in the prime of her life. She was a working nurse anesthetist, and served in France during World War 1. I never met her. She was undoubtedly smart and is the closest family medical mentor that I have, and yet she died before I was born due to her BRCA1 gene. Had we known…

So when it was my turn to previve ocarian cancer my ovaries and fallopian tubes were removed by my competent medical team. I hope to avoid her fate and to meet my grandchildren. There is no guarantee, but I have lowered my likelihood for this cancer. The reason there is still some risk is because it's not possible for all of the cells carying the risk to be removed by the laparoscope and my well trained surgeon.  Nevertheless, I can hope to have previved. 

I want to share other stories of previvorship. This concept is growing. It is destined to become a common dilemma as the genetic frontier is blazed. More genetic predispositions will be uncovered, more previvor options will be 'on the table'. It is a brave new world. We HBOC canaries are simply the first in the mine of genetic predispositions to deadly diseases. Perhaps some day previving will be the one question we need to face, rather than surviving. 

This is what Previvor’s Day is about - the human experience of skirting predisposition to deadly disease in our modern time. 

My maternal grandmother and probably my mother, too, died of ovarian cancer.  When I was 40 endometriosis caused me to have a hysterectomy.  I said I wanted my ovaries gone, too.  But, the doctor said “no”.  He couldn’t remove them unless there was a medical need. 
Fortunately, my ovaries were entwined with endometrial “strings”, and they were removed.  I know I still have a chance of getting ovarian cancer, but I’m so glad my ovaries are long gone and my chances are slimmer.
Thank you for your courage in sharing your experiences.

By carol woessner on 2016 09 30

Hello Carol,
It is such a difficult subject. Even with my ovaries and tubes gone there is now the taunting risk that they are adding the uterus to the list of organs that might blow up into cancer with the BRCA mutation. Also, the peritoneum (lining of the entire abdomen) comes from the same cell line as the tubes and is at risk. The pancreas is also a little time bomb. Those last two structures can’t be previvingly removed. All one can do is be grateful for this one moment and not fret the next. Thanks for sharing your story too and glad those little ovaries got the yank.

By Cynthia Bailey, MD on 2016 10 06

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