Welcome to Power of Our Genes- A walk in my shoes. I am coming up on my 26 birthday and 3 years of the knowledge of my BRCA status and not only have I personally come a long way, but I feel like we as a population have come miles even from the time that I tested positive. When I first found out my status I didn’t really know anyone, other than my family of course, that were affected by the BRCA gene. Now I feel like I am constantly meeting people who are affected themselves, know someone, have heard of the testing, want to get tested themselves, know someone who was tested, or are interested in the BRCA subject. Who would have thought a BRCA article would have been published in Wired Magazine of all places?! There is a movement and I’m proud to be a part of it.
A Little History on Me:
I have always considered myself a very take-charge type of young women, even at the age of 26. If someone tells me I can’t do something my automatic response is to find a way to make it happen or to prove them wrong. As a sales person this has allowed me to be very successful and I don’t see how the treatment of my health and my body should be any different. Losing my mother at age 12 in 1996 (the BRCA test was only first commercially available in 1994 when she was diagnosed) from ovarian cancer, my older sister and I found ourselves making choices children did not usually need to make at those ages. We were raised by our single father who did remarry in 2003 so our family has significantly grown. Until just this summer, I was the only one of my generation to have been tested. My sister did decide to finally test just several weeks ago.
I do still consider myself a newlywed and I am truly lucky because I married the most supportive, adoring, wonderful man in October 2008.
We were engaged when I tested positive and I am thankful to say that it probably drew us closer. My poor husband, with all the craziness of our wedding, I threw in getting tested, a positive test result and when someone asked if he ever consider not marrying me is answer was (before he almost wanted to punch the guy) “I have high cholesterol. I could have a heart attack. We will deal with whatever comes our way. That’s what love is.” I have a good guy. =)
Why I Tested:
Before I get into why I tested I first have to thank the two women and one doctor that found the genes in my family in the first place because without them, I would not have known to get tested. As I mentioned previously, my mother died the year the test came out so she was actually never actually tested for the gene herself. My aunt Sarah and my aunt Martha, her only sisters, were tested the years following her death. A risk factor for hereditary cancer is a breast or ovarian cancer before the age of 50 and her oncologist had mentioned the testing to her sisters after her death suggesting that the cancers in my family were too much of a coincidence. While my mothers younger sister Martha tested negative, my aunt Sarah, who had had cancer at age 29 tested positive for BRCA1.
Deciding to actually get tested is a huge and very personal decision for a lot of people. I actually made the decision on a whim and didn’t really consult my husband (then fiancé), family or friends on what the results would really mean and just went to my OBGYN and asked to have the blood drawn. Note: This is not the recommended way as it is highly recommended to consult a genetic counselor first but I am stubborn and this is the way I wanted it. My mother had passed away of ovarian at 39 and my aunt, her sister, was a stage IV breast cancer survivor at age 29. The third sister had tested negative and brother had tested positive. With that history, my insurance had no problem running the test. My results were in within a week or so.
In later posts I will discuss the ranging emotions and things that happened post finding out that I was positive. What I will say for now is that I am in a better place now then I have ever been, I have met the most amazing people and I will continue to pursue options to make sure that my health and the health of others regarding BRCA and those that are “high-risk” remain optimistic. The knowledge and power that we gain from our genes is truly amazing but it is what we do with that information that is what makes it so useful!!!
When I share my BRCA status people always say “I am so sorry” like I have just told them I have a cancer diagnosis. I wish I could carry a BRCA dictionary with me and explain to them what exactly BRCA is and coin the term “previvor” for them but there just isn’t enough time in the day. What I do try and get across is that knowing my BRCA status has changed my life in such a positive way. It isn’t always that way for everyone but for me it has been enlightening. I know, I sound pathetic and maybe a little too much like a self help book but this is exactly what I told my older sister Lesley before she went for her Myriad test. Our mother didn’t have the luxury of knowing her BRCA status and I truly believe she would still be here is she did.
Thanks for joining me and please feel free to comment!