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How does a mother of two - who works as a legal secretary and loves baking, bike riding, books, and puzzles - become a research advocate? Who could have imagined that making decisions with my medical team about how to manage recurrent ovarian cancer would be the most challenging puzzle I would ever face?
Now it seems we haven't been playing with all the pieces.
In 2004, at the age of 40, I was diagnosed with ovarian cancer. Although I'd had no risk factors - I am Filipina and Puerto Rican, with an extremely low incidence of cancer in my very large extended family - I had experienced symptoms for 9 months. Having received the diagnosis, I began treatment. The first three-and-a-half years were rough - I underwent the initial debulking, a second cytoreduction surgery, a third cytoreduction/partial liver resection, five different chemotherapy regimens, and a remission vaccine clinical trial.
In my first remission I felt like Alice in Wonderland as I tried to make sense of this strange new world and learned to live with uncertainty and loss of control. Local support groups - Gilda's Club Westchester and SHARE: Self-Help for Women with Breast or Ovarian Cancer - provided amazing opportunities for me to connect with other survivors, some long-term without recurrence and some managing recurrent disease. This helped me see that there were many different ways to cope and live with ovarian cancer.
At my first recurrence, I felt as if I'd wandered into the setting of Goldilocks & the Three Bears. I was now involved in treatment selection and there were many choices on the table - like so many different kinds of porridge. Unfortunately, there didn't seem to be a porridge that was just right for everyone. How would I find the porridge that was just right for me? And what if the porridge just right for me was not ready yet but still cooking on the stove?
I turned to the group at SHARE. We talked through our treatment options and discussed cancer reports in the news and the latest buzz about novel therapies. Several "old-timers" shared their perspectives and inspired me to ask questions: How does each new piece of research fit into the big picture? Is it something new? Or is it validating previous studies? Has research produced mixed results through the years? Was the research conducted in cell lines, mice, or people? Was the study a randomized clinical trial or a retrospective analysis? My questions were becoming more complicated as I began to dig deeper to understand my treatment options, including clinical trials. I asked my doctors many questions and I learned more at Ovarian Cancer National Alliance (OCNA) annual conferences, FWC survivor courses and webinars.
Learning more and having discussions with other survivors improved communication with my medical team and gave me confidence to actively participate in the decision-making. I volunteered on SHARE's ovarian cancer helpline and became closely involved with OCNA. A few years ago, another survivor and I were discussing some controversial areas of ovarian cancer treatment, hoping to expand our understanding of the issues and to think about how each piece of the puzzle fits with the others. She asked if I had considered applying to the DoD Ovarian Cancer Research Program. I had heard about this program at OCNA conferences, but didn't think I was qualified because I have no medical or scientific training, or even a college degree - although I do read a lot and ask a lot of questions. She said, "That's what they need!" OCNA nominated me and the opportunities I have had to serve as a consumer peer reviewer have been amazing.
These are very exciting times in ovarian cancer research. In the past few years so much new information about ovarian cancer has been revealed-we've been in uncharted waters for so long! Where do we need to go now? And how do we get there? Where do we focus limited research funds to do the most good and benefit patients as quickly and safely as possible?
As the conversation about the direction of future research continues, it is important that consumers maintain a seat at the table. We bring a sense of urgency and contribute a perspective and first-hand experience that the scientists do not have. It is also important to have diversity to fully capture our community's broad experience. Not just ethnicity, but also early- and late-stage, recurrent or not, north/south/east/west, big cities and small towns, cancer centers, university hospitals and community hospitals, long-term survivors and newly diagnosed, and different cell types. We need "50 shades of teal" to be represented in the dialogue as science moves forward.
I feel lucky to be enjoying an unexpected, very long, third remission. The OCRP will bring us closer to the day when ovarian cancer survivors no longer have to rely on luck for a good outcome.
Last updated Wednesday, January 27, 2016