Bob's "I am Oneinforty" Story
My name is Bob Cooperstein and I am Oneinforty. I am 72 years old and do not have cancer. However, I do have the BRCA1 gene mutation. Lauren Corduck, the founder and executive director of Oneinforty, is my daughter and she inherited the mutation from me.
My mother died of breast cancer on March 1, 1971 at the age of 56. My only sister also had two bouts of breast cancer before the age of 60 and died of unrelated causes a few years later. Since neither my mother nor sister were ever tested for the BRCA mutations, I can only assume they were positive and that I inherited the gene from my mom.
So, what is the story I want to share with you today? It is actually twofold. Firstly, I want to impress upon you the importance of being tested. If not for your own peace of mind, then for your children and grandchildren. The one in forty risk exists if there is at least one Ashkenazi grandparent. A child can inherit the mutation from either parent. There does not have to be any family history of cancer to be carrying the mutation. If you and your spouse are tested and are both negative, your children will also be negative. If one of you tests positive for the mutation, you have the opportunity to share this information with your children and they can be tested at the appropriate time.
Bob’s mother, Frances, who died at 56 from breast cancer. (Sarah Bastille for MGH Cancer Center)
I know this sounds very concerning and is something human nature tells us to avoid. I want everyone to know the alternative is truly frightening. If the information to be tested for the mutations were readily available to me 25 years ago, Lauren would have had an excellent chance of avoiding Stage 4 ovarian cancer today. Yes, she would have had to make some difficult decisions, but likely could have avoided the cancer. An easy decision in hindsight.
What I would also like to share with you is what my wife, Betty, a Licensed Clinical Social Worker, calls legacy burdens. This refers to the feelings of guilt a person faces knowing that a child inherited this mutation. While I don’t have cancer, I carry the burden of seeing someone I love so dearly struggle with this disease. Also, there is the possibility of my grandchildren inheriting the BRCA gene mutation. This is not one of the legacies I expected to pass on.
So, how do we deal with this? We must put aside our fears and misconceptions and take charge. The very first step is to make sure we are tested. If you accept the challenge and are tested, you may never have to deal with the legacy burden. Now that we know what has to be done, we can have such a positive impact on future generations. I can tell you first hand that you will feel the peace of mind that knowing brings. I never had that opportunity and urge you to grasp it now.