Pink & Blue Colors of Hereditary Cancer
I am not a BRCA gene carrier but tonight I will be hosting the premier of the movie, Pink & Blue Colors of Hereditary Cancer, in my city. What is my interest then, you might ask?
My Journey Through Genetic Testing
I was diagnosed with breast cancer for the second time in 2014. I had a double mastectomy because the cancer was in both breasts this time. I knew a double mastectomy was the best course of action for me after asking, educating myself, researching, and having that all important, shared decision making discussion with my health care team. I was diagnosed with breast cancer at an early age the first time. This was my second occurrence. Those two criteria alone were enough evidence for my breast surgeon and oncologist to recommend that I have genetic testing. From the National Cancer Institute:
Several screening tools are now available to help health care providers with this evaluation (17). These tools assess family history factors that are associated with an increased likelihood of having a harmful mutation in BRCA1 or BRCA2, including:
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Breast cancer diagnosed before age 50 years
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Cancer in both breasts in the same woman
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Both breast and ovarian cancers in either the same woman or the same family
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Multiple breast cancers
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Two or more primary types of BRCA1- or BRCA2-related cancers in a single-family member
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Cases of male breast cancer
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Ashkenazi Jewish ethnicity
I began my own process of genetic testing by speaking with a geneticist at the cancer facility I was being treated at. I had that counseling and overwhelming amount of information given to me at a time I was healing from the double mastectomy, waiting for further test results, and trying to plan my DIEP flap breast reconstruction. I was on emotional and information overload. I stopped short of signing the paperwork and giving my blood sample because I couldn’t bear to know the results. Why?
I had breast cancer twice. The burden of knowing that I might possibly be carrying a gene that could impact my loved ones was emotionally devastating to me at that time. If I was tested and found out I was positive, how could I tell my immediate family members the news that they, too, should be tested? It literally made me cry at times to place myself in that position. They had been through this diagnosis twice and now I was going to deliver the news to them that I carried a gene that could possibly influence their future health decisions?
Deep Breath, Time, and Clarity
I put my genetic testing on hold for a few months. I had my DIEP flap breast reconstruction done in December of 2014. I returned for my pre-op appointment at my plastic surgeon’s office in early April of 2015 to have the second phase of my reconstruction, the fat grafting portion. Through my second breast cancer journey I have made it a point to surround myself with people who are positive, compassionate, knowledgeable, and wise about all things breast cancer. My plastic surgeon was one of those people.
I told him my angst and emotional block about completing my suggested genetic testing. He asked me this question, “Have you actually asked your family members if they want to have the results of your genetic testing?” It was a light-bulb moment for me. I was too wrapped around the axel about telling them the results when I hadn’t even asked them that one question. Dr. Chrysopoulo advised me in a compassionate manner to “give them the choice”. They have a right to know or not to know but “have the conversation with them”.
I did and was pleasantly surprised that they wanted to know the results for their own future. I realized I was giving them the power to make imminent health decisions based on information I could give them. How powerful is that!
And so, this brings us back to the movie premier. My social media friend, Amy Byer Shainman, kindly reached out to me in partnership when she saw that I opened a Foundation to empower patients with education about breast reconstruction after mastectomy. I was honored that she called me to host this movie to raise funds for the Foundation. What many of you won’t know is the team effort Amy and I did behind the scenes and in the planning of this movie. It was simply born out of the passion we both share. That is the passion to educate, to inform, to place into the hands of the viewer the inspiration to know what genetic testing can do for you. It is your decision to have genetic testing done, just as it is your decision to have breast reconstruction after mastectomy. You can’t make that decision unless you have the tools, the information and education, to move forward.
I had my genetic testing done and not only do I not carry the BRCA gene, I had no VUS (Variant of unknown significance). But now I know. I have shared this education and information with my family. There are many people I will not know in the audience tonight but there are those I will know. A friend, Khevin Barnes, male breast cancer survivor, will be there. My own genetic counselor, Dr. Christina Laukaitis, will be there and has offered to be on the panel discussion after the movie. My breast surgeon, Dr. Michele Boyce Ley, who performed my mastectomy will also be on the panel. Lisa Rezende from FORCE who is BRCA and had her own prophylactic bilateral mastectomy will be on the panel. Lisa and I met just this week and the exchange of information was stimulating to say the least! What a team and how very honored I am feeling to know this group of individuals.
I’m excited for the audience to have Pink & Blue Colors of Hereditary Cancer movie premier come to our city. I have not seen it but know I will have an immediate connection and will learn so much not only from the movie but from those in attendance. It is about community, sharing information, and common goals that help each of us live fully informed lives with passion.