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Women’s Philanthropy program lead me to life-saving testing
This past spring I attended the Herbert and Maxine Block Memorial Lectureship Community Panel Discussion hosted by The Ohio State University James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC – James) in partnership with the Jewish Federation of Columbus’s Women’s Health Series. The event featured a panel discussion on cancer genetics and included Dr. Mary-Claire King, the researcher who discovered the BRCA gene. I went for a few reasons: One of my good friends was the chairperson, I’m very involved with Women’s Philanthropy at the Jewish Federation of Columbus, and a lot of my friends were going, including a friend with the BRCA-2 gene.
Honestly, I didn’t go thinking I would pursue the genetic testing afterward. My mother, a breast cancer survivor, had tested negative for the BRCA-1 and BRCA-2 genes, so I smugly thought I was not at risk. However, during her lecture, Dr. King talked about how BRCA genes can be passed paternally. Hmm, I thought. My father’s mother and grandmother both had breast cancer. Maybe I should get tested. Days later I had my annual gynecological check-up and asked if I should pursue the test. My doctor suggested I do so, given my risk factors. She added it into my file, and within a week I had gotten a call from the genetic counseling program at the OSUCCC – James.
The first step was to complete an online survey, and then they would call me to schedule a consultation. The summer went by, as summers do, and I didn’t complete the survey. One day in late August I was searching my email for something else and found the survey link. I clicked through and before long I had completed the family history and hit “submit”.
The next day the genetic counseling program at the OSUCCC – James called to schedule an appointment. It was brief, they confirmed I had some risk factors, and they recommended the testing. They took some blood, and I headed on my way.
“I don’t remember everything that was said immediately after, but I do remember I kept asking the same questions over and over. How much risk? What should I do next? Do I have cancer?”
I didn’t think about it again until late on a Friday a couple of weeks later, when the genetic counselor called with my results. She started reading the report to me: no risk for BRCA-1. In that brief moment, I had checked this off my list, thinking the test confirmed what I knew, that I was not a carrier of the gene. And then…she said I did test positive for BRCA-2 and was at significantly increased risk for breast and ovarian cancers. It was a stunning moment, and I don’t remember everything that was said immediately after, but I do remember I kept asking the same questions over and over. How much risk? What should I do next? Do I have cancer?
The good and bad of the timing of the call was that I had what seemed like an endless weekend to think about things before I could reach a doctor on Monday. Of course I did an Internet search and read the statistics. I tried to stay on factual sites so I could avoid going into the rabbit hole of Web searches. I also took a long walk with my friend who has BRCA-2 and got some wonderful advice, and more importantly, reassurance that I was not alone. The weekend was filled with highs and lows, and I anxiously started calling doctors on Monday.
I’ve since had a few appointments, with more to come, as I hone in on decisions that lie ahead. I feel lucky for so many reasons: to be the age I am, post-childbearing, so the decisions I have to make do not involve my reproductive choices; that I have friends and family who will support me through whatever decisions I make; and mostly I feel lucky to have this information. I now have control and power over what happens next, and I’m not waiting for cancer to choose me. I can take action now that will potentially add years to my life. I’ve told some friends about my test results, and several have already made appointments for their own testing. I hope their tests come back negative for the BRCA gene, but if they find out they carry the gene, I will be there for them.
If you want to learn more, see the websites below and consider joining us at these upcoming events:
- Thursday, Oct. 26 at 7 p.m. at Temple Beth Shalom, the JCC Jewish Book Fair will feature Stacy Middleman, author of Dear Cancer, Love Stacy. Stacy will talk about her personal experience with breast cancer. Learn more here:
- The Claudia Rinkov Lectureship in Ovarian Cancer
“Moving the Bar in Ovarian Cancer: Advances in Treatment, Diagnosis and Prevention”
Wednesday, Nov. 1 from 6-8 p.m. at The Blackwell Inn and Pfhal Conference Center on The Ohio State University campus.
The Claudia Rinkov Lectureship in Ovarian Cancer was established in 2011 at the OSUCCC – James by her family to continue Claudia’s legacy and advance ovarian cancer awareness in the community. To learn more or RSVP to The James: 614-366-9931 or email@example.com
- OSUCCC-James genetic counseling: go.osu.edu/geneticcounseling
- The Herbert and Maxine Block Memorial Lectureship for Distinguished Achievement in Cancer is hosted by the OSUCCC – James and the Block family. The lectureship supports an international competitive process which annually identifies an individual whose contributions to cancer research, patient care and/or education have received international recognition. The Block Memorial Lectureship Award one of the largest prizes awarded by an academic institution in the field of cancer. The proceeds from the Block families’ annual golf tournament, the Herbert J. Block Memorial Tournament, go to support the lectureship and bring distinguished professionals in the field of cancer to The James and Columbus, Ohio. go.osu.edu/blocklectureship