I was initially diagnosed with stage 2b high-grade ovarian cancer. Statistics say that this stage means a 70 percent chance of being alive and cancer free for at least five years — which many (including myself) consider cured.
So when, at 16 months after finishing chemotherapy, I was told my cancer was back, I was in complete shock. I don’t think my initial diagnosis hit me as hard as my recurrence. I went from feeling healthy, like “I beat this,” to hearing I had a long road ahead — to hearing my cancer was treatable but not curable.
I spent a lot of the first few weeks after that crying — thinking the worst, worried about my kids growing up without a mother, and completely paralyzed by indecisiveness. I didn’t know what treatment I should do next, since there are many treatment options for recurrent ovarian cancer, without a clear winner that will help you live longer. Which standard treatment should I do? Should I enter a clinical trial if eligible, as my oncologist suggested? The stakes seemed high: Pick the wrong treatment and my cancer (or the side effects of treatment) would kill me quicker. Pick the right treatment and I may have a chance at a long remission.
Thoughts of clinical trials gave me something productive to do — research! I felt like I had a choice in my treatment. I took a deep breath, told myself it was important to take the time to choose the right treatment for me (despite my internal feeling that I had to start treatment RIGHT NOW!), and began the next phase: planning my next treatment. I started the way my oncologist suggested: going to ClinicalTrials.gov and entering the term “platinum-sensitive ovarian cancer.” (For those not familiar with this term, I was considered platinum sensitive because it had been more than six months since I finished a platinum-based treatment.) I clicked “Recruiting and not yet recruiting studies” and then hit “Search.”
I think about 50 trials came up in my search, so I narrowed it down to those within the United States. That brought it down to about 30, which was still a lot to review and process. Next, I looked for cancer centers that treated a lot of patients. (I would consider traveling if needed.) I also preferred trials that were drivable or had sites near family and friends in case I needed to move for part of the trial. I ended up with about six trials that seemed like a good fit for me. This means I didn’t have other medical diagnoses that would exclude me, hadn’t already had certain cancer treatments that were being paired with the trial drug, and didn’t have certain mutations in my tumor that would make me ineligible. I also chose trials that gave medication in either pill or intravenous form. I would estimate this research took me about 20 hours, but I didn’t do it all at once. It was heavy stuff with lots of unfamiliar medical terminology, even for someone in health care. I would look for a few hours and then take a break for a day or two.
I also sought a second opinion at a nearby cancer center, where I had gone for a second opinion after my initial diagnosis. I talked through these trials with that oncologist, who gave me his opinion on them and recommended a trial I had not given much consideration to, although it was one I came across in my search. I took the informed consent form home and made an appointment with my local oncologist.
The next visit with my oncologist was long. I went through the six trials, plus the new one from the second opinion. She listened to my thoughts and gave me her honest opinion about the trials and whether she thought a trial would be a reasonable choice — whether it may help me. She, like me, had reservations about the new trial. This brings up an important point: A trusting, therapeutic relationship with your oncologist is so important. My oncologist will not sugarcoat a result or paint a picture of gloom and doom. She is humble and shares what she knows, what she thinks, and what she hopes, identifying each statement as such.
In the end, I decided that none of the trials were exactly right for me and chose to go with a more standard regimen. I don’t regret this decision at all, even though it did not stop my cancer from progressing. I made the best decision with the information I had at the time, and I partnered with my team. I did not blindly accept a recommendation to do a treatment. I had months of treatment locally, had manageable side effects, and was able to work with minor accommodations.
In the end, it is my body, which I know better than anyone. I am the person who experiences the side effects, the hard days. I believe it will always pay off to honor my body and trust my instincts. I remind myself that I am doing the best that I can, that I am still here and fighting, and that is good enough.
To conclude, when I discovered the standard regimen wasn’t working, I went through a similar (but shorter) research process and also got a third opinion. This time, the three opinions were unanimous about recommending a specific trial that I qualified for (over standard treatment).
And, more important, it seemed like a good trial for me, combining one of the treatments that I had the first time around (leading to my remission) with a brand-new class of medications that has shown promise — a treatment regimen I’m still on with stable disease.
MyOvarianCancerTeam members discuss ovarian cancer from a specific point of view. Members’ articles don’t reflect the opinions of MyOvarianCancerTeam staff, medical experts, partners, advertisers, or sponsors. MyOvarianCancerTeam content isn’t intended as a substitute for professional medical advice, diagnosis, or treatment.