By Jamie C.
My cancer story begins in 2007, when I was a healthy, traveling, living life, family planning 34 year old. I had never been seriously sick in my life. Stage IV ovarian cancer changed all the plans I had for myself.
I had just recently returned from an epic trip to Vietnam with my husband and friends. I was getting back into the daily routine, when I noticed two lumps in my groin. Not thinking too much of it, since they seemed so symmetrical, one on each side, I went about my days. A few days later another lump appeared on one side. I decided I better get myself to the doctor.
I was a pretty healthy and active person. I had lost quite a bit of weight, but couldn’t get rid of the dreaded “pooch” on my stomach. I had always had a bit of “stomach” trouble when I ate certain rich foods like red meat. Looking back, all these should have been signs that something wasn’t quite right.
My doctor was pretty proactive and we discussed that I would be going to my gynecologist the next month. We decided to wait and see what she thought. I wasn’t satisfied with her “diagnosis” that I was just ovulating and should wait and see if the lumps disappeared. I went for a biopsy of the lumps. CANCER! That May day in 2007 sent my life spinning.
I went for consults in my town, heard crazy scenarios about what would be done, where I should travel to, how I should start a will. It was all surreal. I luckily had my amazing husband, who took charge. He contacted the Seattle Cancer Care Alliance for a second opinion.
Everything I was reading online told me I should been seen by a Gynecological oncologist. I should have surgery performed by a gyn/onc. The doctors in my town were none of these things. They were general surgeons and oncologists who treated everyone. Why were they not telling me this information? Why wouldn’t I go see the doctors who could best treat me?
I was fortunate to get placed into the care of Dr. Barbara Goff. She was aggressive, yet kind. She wanted to enroll me into a phase 1 clinical trial, which meant I was fast tracked for surgery and started chemo two weeks after debulking surgery. I received six dose dense biweekly chemo cycles combined with six cycles of IP chemo after. Looking back, I feel so fortunate to have been able to participate in a clinical trial. I feel it gave me the best chance at progression free survival.
As the years have gone by, 13 to be exact, Dr. Goff has reached out to me to participate in a few projects, not just with her, but other doctors and researchers. She connected me with the UW’s Tumor Vaccine Group (now Cancer Vaccine Institute), where I received a vaccine for ovarian cancer. I’ve had the opportunity to speak and tell my story to other groups at fundraising events. One of the greatest opportunities I’ve had is to be an advocate on the Stand Up to Cancer-Ovarian Cancer Research Fund Alliance, National Ovarian Cancer Coalition Dream Team, with Dr. Elizabeth Swisher.
The role of an advocate has been the most enlightening and rewarding thus far. It has afforded me the opportunity of being more than just a patient. I’m able to share my experiences as a patient with the Team and help shape the clinical trials being put forward for new patients.
I’ve learned that: Advocates are patients and patient representatives. Advocates are essential team members. Advocates are outreach ambassadors who harness the power of advocacy groups and now social media to promote clinical trials and help translate and publicize findings to the ovarian cancer community in order to maximize the impact of study findings and clinical practices.
I’m no longer just a patient. I’m a survivor and now an advocate who can use my experiences to change the outcomes of women who are fighting and about to be fighting ovarian cancer. I can use my experiences to help doctors and researchers find novel ways of reaching patients for participation in trials. I can partner with doctors to help them find funding and donors for research projects. I’m excited to do just that as part of the CVI Patient Advisory Council!
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