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previvor day

September 28, 2016: Previvor Day for BRCA Carriers

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.

Having a genetic predisposition to breast and/or ovarian cancer means that a person's genes predispose them to having an even higher risk of suffering from one of these cancers compared with 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 Hereditary 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 but known...

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

brca breast cancer survivor and ovarian cancer previvor dr. cynthia baileyI learned that I was a BRCA1 gene mutation carrier when I was diagnosed with breast cancer.

After the breast cancer which invaded my life 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, probably due to her BRCA1 gene.

Had we known…

So, when it was my turn to previve ovarian cancer, my ovaries and fallopian tubes were removed by my competent medical team. I hope to avoid my grandmother's fate and to meet my grandchildren. There is no guarantee, but I have lowered my likelihood for this cancer.

Removing ovaries and Fallopian tubes does not remove all the cancer risk for BRCA patients

The reason there is still some risk is because it's not possible for all of the cells carrying the risk to be removed by the laparoscope and my well-trained surgeon. These same type of cells line the abdominal cavity (called the peritoneum).

Nevertheless, I can hope to have previved. I want to share my previvorship story. Perhaps it makes it less scary to take the surgical plunge and try to avert cancer. 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 someday 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.