Here’s a great blog post from Niecee Schonberger, MS, CGC, Coordinator of the Genetics for Life program at Sharsheret. Thanks Niecee!

I met Dina at the annual conference of the National Society of Genetic Counselors last month in San Diego. She gave an inspirational presentation about some of the issues surrounding genetic testing and genetic counseling, specifically as they relate to previvors. As a Genetic Counselor, she invited me to share what I know about cancer risk, testing and genetics with all of you.

That’s a big assignment! But I’ll start with a non-genetic fact, which is that most breast cancers and ovarian cancers (90-95%) are NOT inherited. They are what is called sporadic. I know this surprises many people. Only about 5-10% of these cancers are due to a pre-disposition mutation (change) in one of the BRCA genes. Because genetic testing involves limitations as well as benefits, it is important to meet with a Genetic Counselor before embarking on genetic testing. Your family history is the single most important element in trying to determine if your cancer has an inherited basis (in other words, is not sporadic) and the first thing a Genetic Counselor will do is draw up a family pedigree based on the information you provide. So find out as much as you can about your family (both maternal and paternal sides) before you have that meeting: who had what cancers and at what ages. Very often, there’s someone in the family who is the family historian and knows not only the family secrets but also their medical histories. Since men as well as women can carry a genetic mutation, be sure to learn about your father’s side as well as your mother’s.

Having a mutation is not a diagnosis of cancer but an indication that the risk for developing cancer is increased. And, of course, the mutation can then be passed on to one’s children, which is of utmost concern to carriers of a mutation. Our understanding of these genes and mutations is increasing as we speak, but we’re not at the stage where we can say with certainty that a negative result is definitive, except in families where a mutation has already been identified. But in those with a mutation, especially someone who has not been diagnosed with cancer, the issues are complex and often frightening. I am the Coordinator of the Genetics for Life program at Sharsheret, a national organization offering 11 national support and education programs for young Jewish women and their families facing breast cancer and ovarian cancer. If you are Jewish, there’s a 1/40 chance of carrying a mutation, as opposed to approximately 1/385 in the non-Jewish population. We provide many free resources, one of which is linking women with others who have faced the same or similar situations. Our web site, www.sharsheret.org, provides information about our support and educational programs and how to become involved. And you can call me at 866-474-2774. I’ll be happy to speak with you directly.

Niecee Schonberger, MS, CGC