By Annie Ellis
Last month I attended the 2018 annual meeting of the Society of Gynecologic Oncology (SGO). I was a bit sentimental because it was the 10th anniversary of attending for the first time as part of SHARE's 2008 Survivorship Presentation.
What a difference 10 years makes! In 2008 I walked in practically bald and wearing teal from head to toe. I had butterflies in my stomach and was overwhelmed at how much information was being discussed and debated—and how much more was unknown.
This year I walked in confidently and was able to discuss issues with clinicians and researchers who have become colleagues. I was also able to attend Cure Magazine’s inaugural Ovarian Cancer Heroes Awards. Four outstanding leaders in the ovarian cancer community were honored at this event which was hosted by Patrick Dempsey, founder of the Dempsey Center in Maine, whose mother died from ovarian cancer.
After the meeting, I coauthored a report for OCRFA with Research Advocate Highlights of the meeting. This report includes early clinical trial results and mentions ongoing research in rare tumors and the area of survivorship.
Although there has been much progress and more therapies have been approved in the last 3 years than recent decades, I was struck at how much of the survivor experience is exactly the same now as it was in 2008. We could have given the exact same presentation today and it would be just as relevant and powerful, specifically in the areas of:
- Early detection: We still do not have a reliable screening tool or test for early detection;
- Side effects: Too many survivors still struggle with neuropathy and other long-term side effects;
- High rate of recurrence: Although most women respond to initial treatment, too many will still experience recurrence and therapy resistance; and
- End of life: Sadly, too many women with ovarian cancer still die.
Research is ongoing in all these areas, but progress takes time and that is frustrating for survivors as well as the medical community.
Ovarian Cancer Registry
One project that may be able to shed light in these areas is the Ovarian Cancer Registry. Dr. Don Dizon tweeted about the Registry while at the SGO meeting. Although there is a tremendous amount of patient data in multiple sources, the information is not necessarily collected and analyzed to follow patients beyond treatment, through multiple treatments or in a way that patients can directly participate.
The Ovarian Cancer Registry’s mission is include diverse ovarian, peritoneal or tubal cancer patients in research to make rapid advancements in the following areas.
- Learning why ovarian cancers are so life-threatening and vary so much in the aggressiveness and response to treatment.
- Developing more effective ways to treat and prevent ovarian cancer.
- Enhancing survivorship and quality of life.
- Figuring out how to lessen the negative impacts of cancer and cancer treatment on patients and their family.
- Incorporating patient preferences into the decision-making process for treatment and care.
- Eliminating barriers to care and improve access to affordable and effective treatments.
- Raising awareness and engaging a community to join the movement and make a difference.
These are exciting times in cancer research. Patient advocates are involved in helping to form the research questions that are important to us as well as having a say about what happens with our data. Registries are just one way to be involved.