By Annie Ellis
As I prepare to attend the 2018 annual meeting of the Society of Gynecologic Oncology (SGO), I’ve been thinking about the first time I attended in 2008 along with a group of survivors led by Linda Koteen, SHARE’s Ovarian Program Director at the time. We were excited and humbled to be the first survivors to speak during a plenary session. Our presentation on the collective patient perspective included a display of photographs of ovarian cancer survivors from all over the country, and a few outside the US--we wanted to bring everyone on stage with us. The presentation was extremely moving and well received by the doctors.
Back then, I was newly in third remission, participating in a phase I remission vaccine clinical trial and my hair was in the early stages of growing back for the second time. Attending scientific sessions was a little overwhelming as I searched for the best treatment options for my next recurrence. I barely understood anything, but the open dialogue and sharing of knowledge on the latest research from experts from all over the world inspired me to learn more about this complicated disease. Since then I have had many opportunities to serve the ovarian cancer community as a research advocate.
Recently I watched the video of the SHARE presentation and I can’t help but think about how much has changed.
- Sadly, Joan, Carmen, Linda and so many women in the photographs are no longer with us.
- Ovarian cancer was chosen for one of the first cancers for The Cancer Genome Atlas (TCGA). Molecular profiling of tumors has become more accessible and incorporated into many clinical trials.
- After a decade with no new drug approvals for ovarian cancer, several new drugs have been approved.
- There have been many advances in genetic testing, including discovery of new mutations and increased access to genetic tests.
- Stand Up To Cancer (SU2C) has an ovarian cancer dream team which includes patient advocates, including SHARE’s Debbie Polinsky who represents FORCE on the dream team. This team is also making genetic testing more accessible through their Magenta Study.
- There are two teams studying long-term ovarian cancer survival funded by CDMRP’s Ovarian Cancer Research Program and both consortia include patient advocates.
- I’ve seen more survivorship sessions included at SGO. The Foundation for Women’s Cancer has a wonderful booklet about living with ovarian cancer. And so much more!
Yet, too much remains the same and our survivorship presentation from 2008 is just as relevant today as it was 10 years ago.
- Early detection remains elusive and we do not have a reliable screening tool—that needs to change.
- Although many women managing recurrent or chronic ovarian cancer are living longer, most women diagnosed with ovarian cancer will experience a recurrence—that needs to change.
- Therapy resistance continues to be an issue—that needs to change.
- Too many women still struggle with neuropathy and other long-term side effects—that needs to change.
- And too many women with ovarian cancer die—that needs to change!
I look forward to attending this year’s SGO and learning about the latest research from the women and men who have worked hard to bring about advances in ovarian cancer treatment and survivorship these last 10 years. And to let them know that we are all counting on them to continue the efforts to bring about the changes so desperately needed.
SHARE’s current Ovarian Cancer Program Director, Stephanie Blaufarb, will be exhibiting at SGO this year. Please stop by SHARE’s booth if you will be at the conference. Annie and Stephanie will be covering the 2018 SGO conference on Facebook Live, so stay tuned to SHARE’s Facebook page March 22-March 27 for live updates.