Susan Genicoff Raised in Chicago, Susan Genicoff received her Bachelors and Masters Degree in Business at Washington University in St. Louis, Mo. where she was one of the first of three women in the Masters program. Asked to become the first woman on the teaching staff upon graduation, she chose instead to break the gender barrier in Commercial Lending, working on the East Coast. She raised four children in Long Island, New York, where she joined the staff of the Port Washington School District as the Assistant to the Superintendent. She is presently the Director of the School and Business Partnership with the Half Hollow Hills Central School District in Dix Hills, New York, where she is responsible for keeping local businesses involved with the school district. She designs and coordinates programs for grades K-12 that promote awareness of the working world and student readiness. She is a member of FORCE (Facing Our Risk of Cancer Empowered) and has recently become involved in a local initiative for Hereditary Ovarian and Breast Cancer awareness. She is married to a very caring husband who supports her in this effort.

John Wayne once said “Courage is being scared to death and saddling up again.” Little did I know that my sister’s diagnosis of breast cancer in March 2008 would give me the ride of my life. Thanks to a routine mammogram, my sister, almost 50, was diagnosed with invasive ductal carcinoma in situ of the right breast, Her 2 nu and estrogen positive. That’s a complicated way to say she had an aggressive form of breast cancer that was isolated to her right breast, which, thankfully, had not spread to the lymph nodes.

After the initial shock of the diagnosis rocked our family, I asked my sister to get a BRCA test to see if she carried the breast cancer gene. I had learned about this gene from a friend of mine whose family is riddled with cancer and had just had her children tested at Long Island Jewish Medical Center. Educated by my friend, I knew that siblings had a 50% chance of inheriting the gene from generations of family members on both sides of the family, mother and father. Each sibling could be independently negative or positive. While I knew that if my sister carried the gene, I still might not have it, I felt my chances were better if she was negative.

My sister met my request with hesitation; she just didn’t want to know. But my insistence prevailed and she met with a geneticist in Ohio, her state of residence. They mapped out our genetic family tree, which included our paternal grandmother’s breast cancer. The fact that our mother’s sibling had breast cancer was discarded; she had had lymphoma and the breast cancer was deemed a secondary site. Also discarded were our father’s chronic lymphocytic leukemia and prostate cancer, and his sister’s bladder cancer. However, I am an Ashkenazi Jew, which increased the risk substantially. Given this history, we had a 21% chance of having the BRCA 1 or BRCA 2 gene. When it came time for the blood draw, my sister postponed it. Faced with breast surgery and chemotherapy, she just didn’t have the emotional strength to discover a genetic trait that could possibly mean more surgery and impact the lives of her three daughters.

Possessed with the fear that I could be BRCA positive, I picked up the reins and made an appointment with Dr. , a geneticist at North Shore LIJ’s Center for Advanced Medicine. This was the same doctor used by my friend. I waited two weeks for my appointment, and on August 26th, 2008. I had my initial interview with Dr. D’Olimpio. As with my sister, my genetic family tree was drawn. The gene analysis would be performed on the three common Ashkenazi Jewish mutations. After hearing the limitations of genetic testing and its risks and benefits, I proceeded with the blood draw. I galloped out of the office, thinking that for once in my life, I had a 79% chance of being negative, and would therefore, put it out of my mind.

During the next two weeks, I sporadically thought about the BRCA test results but reassured myself that it would be negative. However, on September 22nd, Dr. D’Olimpio called to say that I had a positive BRCA 1 mutation on the 187delAG sequence, one of the three mutations found more commonly in people of Ashkenazi descent. He gently apologized for the results for he, like me, believed that I would be negative. He then explained that this result put me at up to an 85% lifetime risk of developing breast cancer and about a 40% to 60% lifetime risk of developing ovarian cancer.

I hung up the phone, scared to death. I stumbled, realizing that my life as I had known it had just changed. I made my mandatory phone calls to family members, made a cup of tea, and literally told my body to move through the routine chores of the day. That night, I pulled out an article that my mother had sent me prior to my testing. Entitled “Spotlight on Cancer Genetics”, it was an article about cancer genetics which mentioned an online community of people with BRCA mutations called FORCE, Facing Our Risk of Cancer Empowered. (www.facingourrisk.org). I went on the website, clicked on “Helpline” and typed in: “Just diagnosed with BRCA 1 mutation. What do I do?” Two hours later, someone from New Jersey who was a FORCE member called me. With my pen in hand, we spoke for about an hour as she outlined what my next steps should be. Her advice picked me up and placed me on the right path for the next few days. My courageous ride began.

My first phone call the next day was to Dr. Karen Kostroff, my breast surgeon at Long Island Jewish Medical Center. Dr. Kostroff and I have had a long relationship over the years; she has performed breast hand exams, removed benign lumps, and provided advice. My husband and I were to make an appointment as soon as possible. Upon seeing her, Dr. Kostroff basically reiterated the statistics on BRCA mutation cancer risks, and outlined my options for the future: quarterly surveillance of my breasts and ovaries or prophylactic bilateral mastectomy with simultaneous reconstruction and salpingo oophorectomy, or removal of ovaries and fallopian tubes. Given my history with Dr. Kostroff, she strongly recommended prophylactic measures. Out of the corner of my eye, I glimpsed my husband slumping in the adjoining chair as I listened fearfully to Dr. Kostroff. As we left her office, we looked at each other and acknowledged that she basically had given us no choice: prophylactic surgery would get the cancer before I did. And that is what we wanted: to be in control of something that we had no control over, not wait for the cancer to get me, but for me to get it.

From that moment on, my resolve was great. I would stumble no more on my path towards prophylactic surgery, and called Dr. Kostroff to tell her of my decision. Thankfully, Dr. Kostroff took the lead on my case, sending me first for an MRI. Ironically, a lump was found, though its characteristics presented as benign. I received this piece of news with mixed emotion: on the one hand, I couldn’t believe they found another lump and on the other, I realized that with prophylactic surgery, I would never have to go through the stress of benign vs. malignant again. No more waits in the waiting room with 10 other women having mammograms, looking worried; no more silent suffering while I waited two weeks for the results of a biopsy. After the MRI, Dr. Kostroff sent me to two breast reconstruction doctors, one whom used implants and one whom used the stomach flap procedure. I visited both and after a discussion between all three doctors, we decided that the stomach flap procedure performed by Dr. Alex Keller would give me the best results. Surgery date was set for October 14th, 2008, just three weeks from my initial diagnosis. I then visited my gynecologist, Dr. Jonathan Herman, who, by luck, was a specialist in the BRCA gene. Due to scheduling problems, the oophorectomy could not be performed at the same time as the breast surgery, but he is at the ready and I will have them out as soon as is possible.

As October 14th approached, my courage grew. My mantra became “I’m going to get the cancer before the cancer gets me.” I prepared for surgery according to my doctors’ instructions. As I was wheeled into the operating room, I reminded myself that the doctors were not trying to kill me; they were trying to make me well. And I was trying to make me well by saving my life.

Sixteen hours of surgery later, I was wheeled into the recovery room with “perky” breasts and a 1% chance of breast cancer. While at the time, I didn’t feel anything but miserable, three days later in my own bed I again felt overwhelmingly empowered by what I had done. I was scared to death at the diagnosis of BRCA 1 positive. But I gathered courage in the knowledge that I could control and conquer my risk of breast and ovarian cancer. I never once waivered in my decision to do prophylactic surgery, nor am I sorry today. As Dr. Herman said, “those who find out they are BRCA positive yell to the world around them: ‘Get tested!’ And that is what I am now doing. I have helped to save my life, and as John Wayne said, I have “saddled up” for the rest of my ride as I spread my message and help other like me save their lives too.

Becoming spiritual, my sister now believes that the reason she got breast cancer was to save me. And as it turns out, she saved my daughter’s life as well, who, after testing, is BRCA 1 positive.

 Print This Page

coming soon