Agnese Reforzo Arnold
Bethesda, MD

Anna Fiorentino Reforzo, 1940 – 2005

My thoughts on health have not always been so focused. I remember sitting opposite my mother’s gynecologist. All I could do was wonder where my parents were. Outside, several nurses hovered, as if on standby. Then, I heard the words, “your mother has ovarian cancer.” The moment I burst into tears, the doctor made the slightest movement to reach his hand out for mine. He held on until I had finished. “But what does this mean?” I insisted. “Is she going to die?” “How did she get it and how long has she had it?” My head flooded with questions. From that point forward, answers never seemed to replace questions.

Now at 30 years of age, I am committed to doing everything possible to prevent the same tragedy from befalling me. My mother passed away two months shy of 65 – and just 18 months after her diagnosis. My newfound genetic predisposition places me, all of a sudden, in a high-risk category. I knew there would be choices to make.

Having seen situations like mine before, I realize those nurses knew the pain my future would likely bear out. Ovarian cancer has not earned the dubious distinction of “silent killer” without cause. Originally from Italy, my mother lived religiously by a Mediterranean diet. She never smoked. She walked the neighborhood everyday. To my knowledge, no one in her family had cancer. I often think about how, in spite of her lifestyle, she never had the chance to watch me walk down the aisle on my wedding day.

Whether women have a predisposition or not, adopting a motto of “better safe than sorry” has proven easier than I thought. My mother was diagnosed with Stage III, Grade B ovarian cancer, which meant that although it was not caught in early stages, there were “some treatments we could explore.” Ovarian cancer is the silent killer because it often goes undetected – until it’s too late.

Here’s what I have learned. Constantly evaluating my body, I have become attune to the slightest signals that others might ignore. Now I always think about common symptoms of ovarian cancer, like abdominal swelling and bloating, but my mother hadn’t. At my age, precautions may be as important, if not more, than looking for symptoms. I take oral contraceptives because some research shows the regularity it gives to ovulation might help prevent ovarian cancer. Abnormal bleeding between menstrual cycles, once an afterthought, now elicits an appointment with my doctor for further investigation. When the random spotting did not stop after changing birth control pills, I asked my doctor about the next step. I knew of a blood test called the CA-125, and I also knew it often gave false results. Rather than the test, my doctor suggested I see a gynecologist for a transvaginal pelvic ultrasound. I did not hesitate to make an appointment. While a bit daunting, I was relieved when I watched the technician measure the size of my ovaries and report no abnormalities. I will be going back once a year for a comparative ultrasound. But it doesn’t stop there.

Another obvious measure would be eventual removal of my ovaries. I was shocked to find out that it’s possible for ovarian cancer to develop even in women who have had their ovaries removed. Yet every precaution may make the difference, so after my children are born, I plan to go through with the process.

Beyond basic precautions, more can also be done. Currently, I am seriously considering genetic testing. The decision has been difficult and emotional because I know that even if I subject myself to the testing, and a BRCA1 or BRCA2 mutation is found, it does not mean that I will necessarily develop ovarian cancer. The test would provide valuable information that can help reduce my risk for the disease, or even catch it early enough to allow for successful treatment. I am thankful that these scientific developments in genetic testing are an option, and only wish my mother had the same advantages. After my mother passed away, I started a memorial fund in her name for this reason. The fund helps support The Lynne Cohen Cancer Screening & Prevention Clinic at Bellevue Hospital Center, NYU Cancer Institute, a program for uninsured, underserved minority women from communities that have traditionally had fewer medical services available. I believe it is essential to get more women into clinics for screenings before any detected ovarian cancer metastasizes and develops into late stages, especially for those who cannot afford testing. As a research analyst by occupation, I am a strong supporter of obtaining volumes of data to analyze and support trends and patterns. The research collected through the hospital center provides scientists with better insight into the varied symptoms found in ovarian cancer patients, which can be studied to detect and prevent cancer in others, now and in the future.

Over the past several years, I have organized a few fundraisers with the generous help of my friends. Their support has been remarkable, but more important has been the bonding, which has made us all more aware of the symptoms of ovarian cancer. Our efforts in turn prompt them to inform their mothers, sisters, daughters and friends on the facts and risks. Knowledge networks can be the most powerful tool women can employ.

I often think back on the information I have now and how it might have changed the outcome then. I think of the life events my mother might have experienced if she had available to her the knowledge I now possess. Since her death, I have married. My sister’s two boys have started school, and they now have a sister on the way. Having spent the majority of her life in kitchens running our family restaurants, my mother still had much of the world to see. I have made a choice to stay abreast of the latest scientific research and advancements. Throughout the process of caring for my mother during her illness, I have learned – most importantly – that I should never be afraid to ask questions and question explanations. Being proactive has allowed me to take charge of my health. I plan to see each and every one of my children on their wedding day.


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