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Mary Orloff and Brandi Forbes are FORCE Cincinnati/Northern Kentucky Outreach Coordinators. For years, we have worked together to spread awareness, to share vital HBOC information, and to be there for our local members. We hold local support meetings, community fundraisers and exhibit on behalf of FORCE at health fairs and conferences. We, also, present informational and personal speeches where we share our own stories to universities, large companies and with genetic counseling students. It is our joint goal of providing awareness and support that keeps us volunteering for FORCE. Our belief, in line with FORCE's mission, is to make sure to the best of our abilities that no one is alone on their journey, that no one is left without support of self and of information, and that we constantly work toward improving HBOC awareness. Below are our stories of how we found FORCE.
"LUVN LFE". My husband and I were on the way to the hospital when we saw the words on the license plate of the car in front of us. Those words became my spiritual motto on the morning of June 20, 2007. That was the day of my prophylactic bilateral mastectomies. The words seemed preordained and calmed my fears. After all, that was the reason for my surgery. I love my life and will do what it takes to preserve it. I'm a previvor (Time Magazine's #3 buzzword of 2007)!
I've been married to my husband, Darren, for twenty-eight years and we have four sons ranging in age from sixteen to twenty-four years old. My hope is that I will see my children grow up. My mother was not able to do that. She was diagnosed with ovarian cancer at the age of thirty-eight and passed away within 5 months. I was sixteen with four younger siblings; my youngest sister was only ten months old. In addition to my mom, my grandmother, aunt, sister, and cousin have all been affected by either ovarian or breast cancer. With such a strong family history of these cancers, I know that I'll always have to be vigilant and take charge of my health care.
Genetic testing revealed that I have the BRCA1 mutation. I had a prophylactic hysterectomy and salpingo-oophorectomy in 1999. After many years of increased breast surveillance (mammograms, MRIs, ultrasounds, research studies), I decided to have prophylactic mastectomies followed by reconstruction. Information I received at the May, 2007 FORCE conference reinforced my decision to have prophylactic surgery a month later. I met so many wonderful women who were willing to talk and share their stories. I realized that I wasn't alone in this journey.
I thought that when I was finished with my surgeries I would want to forget about all of this, and go on with my life. However, I've become passionate about FORCE and the many ways the organization can help women and their families with issues surrounding hereditary breast and ovarian cancer. I've been an Outreach Coordinator for Cincinnati, Ohio and Northern Kentucky since 2008, and I'm loving life!!!
I love to read, so I volunteered and was co-chair for the Scholastic Book Fair at my sons' grade school. I love to be creative, so I volunteered and decorated bricks for the Breast Cancer Brick Auction. I love to be involved with my sons' education, so I volunteered and was on the PTO Board for their school. I love to exercise, so I walked and ran in various community events like the Emerald Miles for the Epilepsy Foundation. I love my parish family, so I volunteer for my church. And finally, I love to help other women who are facing the same tough health care decisions that I've had to make, so I volunteer as one of the Cincinnati/ Northern Kentucky Outreach Coordinators for FORCE!
I love, so, I volunteer!
I have always known cancer and, as much as it was in my life, I feel like I have grown up with it. Breast cancer was first introduced to me when I was 6 and my mom was diagnosed at age 32. Memories are still there of visiting her in the hospital, not being able to be around her or to live at home for months. Thankfully, after chemotherapy and surgeries, my mom was 'better', but cancer changes people and it changed my mom forever. Just a few years later my Great Grandmother passed away; she, herself, had breast cancer, too. When I was 11, I lost one of the most important people in my world, my Grandpa, who had always been more of a father. Very quickly, but with much suffering, pancreatic cancer took him from me. This time, I was forever changed too. Within a few years, breast cancer struck again and my Aunt, in her 30s, was diagnosed. She, like my Mom, received treatment and had surgeries and is also 'better'. Again, cancer and treatments change people and, this time, I was at an age where I could understand and see it much more. Soon after BRCA testing became available a local hospital requested that my family be included in a study. My Mom and Aunt were both positive for the BRCA2 mutation and my Grandma was negative, so we know that the gene was passed down from my Grandpa, who had already passed. Oddly enough, my Aunt who had cancer tested negative for the gene as well despite having Breast Cancer in her 30s. I was still under 18 and unable to test, but they didn't hide or keep secret any of the information or what their mutation meant.
Convinced I would be positive, I finally turned 18 and went in to be tested and included in the same study. As I had expected, I also tested positive for the BRCA2 mutation. At that time, it felt like a confirmation that I would have cancer and that it would be what I would die of, just like my family. I began surveillance at 22, as suggested by my Genetic Counselor, and, within my first round of breast surveillance a suspicious spot was found. There were more rounds of tests and waiting — so much waiting that I felt suffocated with worry and fear. Though the spot was benign, I had already decided that I could not go through that process again. I began searching for breast and plastic surgeons and discussing preventative surgical options immediately. I knew that I didn't want to go through what my family had and, even more, I didn't want them to have to have to deal with cancer again. I was afraid and I felt completely alone. Before I made my final decisions, I was lucky enough to receive a scholarship to attend FORCE's Conference in 2009. I was given so much information and saw different outcomes from various surgeries, and, more importantly, I met other women my age who were planning surgery or had already had their surgery. I was given the opportunity, through FORCE, to see that they were okay and they were content with their decisions. It was a gift to know that, after having surgeries, women were still happy, still productive, and their lives weren't halted. I returned home and had my own prophylactic mastectomy less than 5 months later.
Now that I knew FORCE and I knew what a benefit it was, I felt that I had to become involved - that I needed to pass on to others that knowledge and support. I joined FORCE Cincinnati/NKY in 2010 as an Outreach Coordinator. I didn't want anyone to feel alone or isolated or afraid like I had. That was my goal when I chose to volunteer; I wanted to, if nothing else, just be there with women and families as they went through the process. People with a strong family history often feel like cancer is their fate, as I did, and to share, with them, the empowerment and choice that they DO have. Being there for people, in whatever stage they're in or however they are feeling at the time, whether it is angry or sad, was what I felt called to do. It felt right to follow with them and to help them carry some of their heavy loads of fear, doubt, and confusion. I am forever honored that I have been allowed to join so many women on their HBOC journeys. In so many ways, volunteering with FORCE and being with people have helped to heal me as well. I learn from others just as much, if not more, than they learn from me. The gift of volunteering is never one-sided; both parties are constantly affected by the other, growing with each other, and intertwining lives. I am grateful to be involved with an organization that provides us with these opportunities.