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Volunteer Spotlight - Susie Goldenberg

March 01, 2014

Volunteer Spotlight - Susie Goldenberg

Growing up, I heard many stories about my maternal grandmother’s struggles with breast cancer. She lost her battle at the age of 37 when my mother, an only child, was only 16. My mom taught me at an early age about performing self-exams. She was a worrier and constantly reminded me to take care of myself.

In 1994, when I was also 37, I found a lump in my left breast and immediately went to see my gynecologist who performed an immediate lumpectomy. I was fortunate to have found my cancer early and even though I believed that my cancer was genetic in nature, very little was known about BRCA mutations. I was treated with radiation and chemotherapy, and although I followed a very strict surveillance regimen, I still lived in fear of a recurrence.

Sometime later, my doctor asked me if I would like to have genetic testing to determine if I had a BRCA mutation. When I asked what we would do if I tested positive, he replied that we would continue what we were currently doing. So, I didn’t feel the need to be tested. I kept up with my exams, literally crying with relief every time my doctor told me that I was cancer-free and healthy.

In 2004, I attended a program at my synagogue in Tampa, Florida about hereditary breast and ovarian cancer in the Jewish population. There I listened to a panel of specialists, including a gynecological oncologist, a genetic counselor, and Sue Friedman, founder of FORCE, as they discussed BRCA mutations and risk reduction. I heard some frightening statistics about those who test positive for a BRCA mutation but I also learned about genetic counseling.

That afternoon I made an appointment for counseling, feeling a sudden urgency to take control. Believing that "knowledge is power,” I decided to go ahead with the BRCA test and was not surprised to learn that I am BRCA1 positive as my grandmother and I both had cancer at a young age and I am of eastern European Jewish descent.

With this new information I felt the need to entrust my care to a specialist and chose the gynecological oncologist who I had heard speaking at my synagogue, who happened to be one of the researchers on the team who discovered the BRCA gene. I was now in my mid-forties and at increased risk for ovarian cancer. I chose to have a bilateral salpingo oophorectomy.

In 2006, I learned about FORCE’s conference where they brought in specialists in all areas regarding hereditary cancer. While I wanted to attend, I wasn’t sure what to expect. What I found was surprisingly wonderful. Here was this amazing event dedicated to helping people just like me. There were experts presenting sessions on every aspect of living with hereditary mutations. I was so impressed with the quality of information available to me, and with the warmth and positive attitude of everyone around me. FORCE provided me with answers to many of my questions and helped me to make decisions about my health care. FORCE gave me the knowledge and confidence I needed to move forward with potentially life-saving prophylactic breast surgery, reducing my breast cancer risk and eliminating the sleepless nights that I had painfully endured, with that constant worry of recurrence.

Now, as a 20-year survivor with no recurrences, I have FORCE to thank, in part, for providing me with the knowledge and power to continue to live a long healthy life. This is why I volunteer for FORCE. I believe in FORCE’s ability to save lives. As one of Tampa Bay’s Outreach Coordinators, I lead quarterly meetings where people can attend to find comfort in talking with others who have faced the same obstacles and concerns. In addition, I have participated in fund-raising and awareness-raising events for FORCE, so that FORCE may continue to provide resources, programs, literature, and support for those affected by hereditary breast and ovarian cancer. 

I also have my family to thank. My husband, Lex’s love and understanding has helped me greatly through this journey. I, also, am thankful for the love and support of my son, Ryan, his wife, Rachel, and my grandson, Miles, who live in Calgary, Canada, my daughter, Rachel, her husband, Motti, my grandson, Nathan, and my daughter, Carey, who all reside in Chicago. I feel very fortunate!

Posted in: Volunteer Spotlight
Tags: FORCE , Volunteer

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