Last week I had the privilege of attending the 10th annual FORCE conference in Orlando. FORCE (Facing Our Risk of Cancer Empowered) is an organization dedicated to helping individuals and families affected by hereditary breast, ovarian, and other cancers. Such as those who have a BRCA or other genetic mutation which greatly increases their risk of these cancers. FORCE provides incredible support and information to those facing difficult decisions with having a BRCA or other mutation. FORCE is also on the leading edge of research into causes, treatments, and preventative measures for hereditary cancers.
When I learned of my BRCA1 mutation, FORCE was one of the first places I found with helpful and accurate information. Their website and Facebook page are very easy to understand and guides you directly to the information you are seeking. They provide sources for what your options are as a BRCA positive patient, connections to peer navigators for support, opportunities for participation in research, and specific guidelines for survivors with BRCA mutations as well as being the first to use the term Previvor. One of my favorite components to FORCE is a program they launched recently called XRAYS-Making Sense of Cancer Headlines. This program, funded by the CDC, is a reliable resource for young breast cancer survivors and high-risk (previvor) women. The expert panel reviews and rates articles on breast cancer research related news or studies and release their own report on the findings. It is a valuable tool to be sure you are reading accurate information as it relates to you. At the conference, I had the opportunity to attend a focus group about the effectiveness of the XRAYS program. It was a very insightful conversation and I was happy to learn the XRAYS program will continue and will hopefully soon be expanded to include ovarian cancer articles as well.
Being at the conference as a Previvor was such a unique experience. Having a BRCA1 mutation is rare and it can often feel very isolating to have surgeries and experiences that a cancer survivor would have, but not having cancer a diagnosis. To be in a ballroom or exhibit hall surrounded by so many other women who understand that feeling was very empowering and not having to explain your decisions or have anyone question it was such a relief. I met some amazing people and heard incredible stories. Women who were told they didn’t need to worry about having a BRCA mutation because they couldn’t get it from their fathers or they didn’t need to worry about breast cancer because they were “too young.” It is so unbelievable to me that these myths still exist in the medical community. We have come so far in the world of hereditary cancers, but there is still so far to go. I learned of a new program FORCE will be launching soon as part of an initiative to reach rural communities and spread correct information to help dispel some of these dangerous myths. I do hope this will reach some of the communities in my own home state of Kentucky!
The most memorable experience of my time at the conference was participating in the show and tell event. I didn’t have the chance to attend the conference prior to my own mastectomy and reconstruction surgeries, but I know it would have been invaluable to see the results of the different options for reconstruction, up close and personal. I am also incredibly blessed to have had the most amazing surgeons who gave me incredible results I am proud to say my surgeons brought me through the whole experience as a stronger and more confident woman than ever before. Having DIEP flap reconstruction, I also wanted to show others that it isn’t the big scary monster of surgery that it seems when all is said and done, most importantly, with highly qualified and skilled surgeons. Anyone who knows me knows that I am generally quite modest and shy, but my desire to help other women see the hope and reduce their fears far outweighed my nerves. It was a chance to pay it forward in a very big way and I am so thankful I did. To stand in a big open room and see the strength of the women who have been through the process standing proud and beautiful and then also see those facing surgery with a palpable sense of relief was the most liberating thing I have ever been a part of.
I am so grateful to Dr. Pankaj Tiwari and Dr. Ergun Kocak for sending me to the conference and their great commitment to their patients with hereditary cancer risk. One of the biggest fears as a woman facing mastectomy is how our breasts will look reconstructed. Having the ability to get amazing results takes away so much of the fear and anxiety.