All of us at one time or another have life defining or life changing moments. What we do with those moments is up to us and us alone.
The moment you decide to have a child. The moment you accept or refuse a marriage proposal. The moment a person commits a crime. Cheats on their partner. Or, the moment when someone is diagnosed with cancer.
As fate has it I have had two of these moments of cancer diagnoses. July 16, 2003. June 21, 2013. Dates etched in my memory with indelible ink. Moments my life completely changed. This last moment led to one more. The first one did not. This moment was followed by the one in which I was told I was likely to carry the BRCA gene mutation. Then another when I was told I tested positive.
The BRCA gene may as well be referred to as the “Pandora’s Box of WTF”, or we can just call it the P-BOW. I’d never really heard about this gene before; nor did I know the risk factors. I thought, when it was referred to as hereditary that only meant that if I’d had first or second degree relatives that had ever had breast or ovarian cancer.
Of course that is an important factor yet other criteria is every bit, if not more important. Having my first breast cancer at 45. I had wondered how I had gotten it at that age which statistically speaking, was young. I also wondered about having a triple negative tumor and how that was so different. Right there, two important risk factors in becoming a candidate for the BRCA testing. And finally, being of what is called “Ashkenazi” (or Eastern European) Jewish descent.
Here were three huge red flags that were “highly suggestive” of carrying the mutation. Yet, it was never recommended that I take the genetic test. It was never recommended that I see a genetics counselor. Nothing in the ten years between my two diagnoses. I imagine I am not alone. It is only now that I have had this test that I realize it should not have been Angelina Jolie that has woken the world up, it should be the very doctors we seek for treatment.
The BRCA recommendation should be standard protocol for every single patient who fits any of the following criteria: click here. One main issue with this test is the ramifications for those that test positive, such as myself. Yes, that P-BOW. These ramifications include the recommendation for a bi-lateral mastectomy, removal of ovaries (after having children) and the idea that my daughters will test positive. Or my sister. Or my brother. Or their children. And on and on.
By knowing that I carry this mutation, I am able to be proactive in my future with cancer. My daughters will be able to begin mammograms at 25; they have more power now than I did before I knew. This knowledge may save their lives.
This is knowledge that every person that falls into the realm of testing should have. Many women had this test recommended to them years ago; some have never heard of it and it’s never been suggested.
This October for breast cancer awareness month, I am reaching out to all women who have or have been tested for the BRCA mutation. I am hoping to collect 31 stories (guest posts) written by yourselves about your experience. How you heard about the test; if you took it and what the results were. How that information has changed your life.
This will just be a start to increasing awareness to the importance of this testing. If you are willing to share your story or know anyone that may, please private message me on my Facebook Page “When You Put it That Way”. My one voice can’t do it alone. As Hilary Clinton once said, “It takes a village”.
Future generations depend on it.
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