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I learned about FORCE after being diagnosed with breast cancer in 2011 and then testing positive for a BRCA2 mutation. I was going in for a routine mammogram that year. Because of my strong family history (that included my mother being diagnosed with breast cancer in her 50s, my mother’s sister having uterine/ovarian cancer at 50, a male cousin on my mother’s side who had breast cancer twice, his sister and their mother both having had breast cancer), the breast imaging physician told me that I was eligible to have a diagnostic MRI added to my routine screening that year. No one in the family knew about their genetic disposition.
Being 42, having had two lumps in one breast, undergoing a mastectomy, and my strong family history, my oncologist gave me a packet for genetic testing at my initial consultation. I was in the last semester of my nursing undergraduate program to go from LVN to BSN (4 year RN degree) and I made it very clear to my oncologist that I was not going to take chemotherapy, because it was going to interfere with school and the related commute between Texas and Oklahoma. Plus, it would make me not feel good and that I was “married to feeling good all day, every day.” He very kindly told me that while he couldn’t promise that I would feel good, he could promise that I would be able to finish school. With that, I agreed to it under protest.
After I completed chemotherapy and reconstruction, I was the first in my family to be genetically tested. I scheduled the prophylactic surgery to have my ovaries and other breast removed simultaneously, with reconstruction to follow a few months later. I have been blessed that all of my surgeries surrounding this diagnosis have gone well and I have had no complications.
FORCE was a wonderful discovery during the time of my preventative surgery. Since completing my surgeries and attending the 2012 Joining FORCEs conference in Orlando via a FORCE scholarship, I decided to become active in FORCE. I completed FORCE Research Advocate Training (FRAT) and was asked to be a Peer Support Group Leader Volunteer in Dallas, which I am to this day. I am also on the ABOUT Network steering committee, which is partnered with FORCE in conducting research surveys on and about the HBOC community, as well as others with a strong family history of cancer, but no genetic mutation detected.
What I love about FORCE is that all of the information is carefully vetted and expertly reviewed so you know that what you are reading is reliable. Being a healthcare professional, I appreciate and understand the importance of evidence-based and empirically tested information. While FORCE never makes recommendations for any specific treatment, it does give you the tools and information to make educated decisions about your health as it relates to HBOC.
I have an unmarried 26 y/o daughter who has recently tested positive for the same mutation. Because of FORCE and its carefully reviewed information, my daughter has access to those tools and information so that she can make educated decisions on the best course of action for her.
Being the only African-American in my group, I hope to continue to partner with FORCE in the efforts of patient advocacy, education, and research to disseminate information about genetic counseling and the options available to the African-American community and beyond.