When I was first diagnosed with cancer, I felt like I needed to ask questions, but I had no idea what questions I should actually ask my doctor. I mean, you don’t know what you don’t know, right? Not knowing anyone around me with ovarian cancer, I did exactly what my doctor told me NOT to do: I went on the internet. I managed to skim over the dismal survival statistics and focused on finding a list of questions that an ovarian cancer patient should ask. In my search, I found an online support group and after reading many of the posts, I felt comfortable enough to jump into the conversation. I said that I had just been diagnosed but didn’t know what questions to ask to ensure that I could get the best treatment and get through the battle.
The women online were friendly, welcoming, and offered a lot of helpful advice. They spoke a whole different language, so it was a bit overwhelming at first. They told me that it was imperative that I have a gynecologic oncologist going forward because ovarian cancer requires specialized training to treat. (I had already done my research on the provider and was already seeing a great gynecologic oncologist so that was one less thing to worry about.) They also said that at the very least I should know:
- The stage of my cancer
- The cell type of my cancer
- The grade of my cancer
These were the very basics that I must know because, unbeknownst to me, not all ovarian cancers are the same. Knowing the stage, cell type, and grade would allow me to understand which therapies might be better suited to treat my cancer. Several women also suggested that I look into clinical trials. They informed me that clinical trials have cutting-edge treatments available and that patients are closely watched. More than anything, they repeatedly stated that we are much more than statistics and several of them had beaten the odds. They gave me so much hope.
I took their advice to learn about my specific diagnosis. After muddling through my pathology report and learning as much as I could, I wrote down my questions so that when I sat down to discuss options with my oncologist, I could write her answers down. I knew I wouldn’t remember my questions or the answers as soon as I walked out of the office, so having it all written down was important.
My oncologist was very forthcoming with information and options. I knew very little about my cancer, and she helped me fill in the blanks. She was also very supportive of clinical trials. Even before I could ask, she mentioned that her office had one that I would probably qualify for. She made me feel like I was a partner in the decision-making process, and although it was a scary position to be in, it was also comforting to know that she wanted to know my thoughts and feelings about the journey I was facing.
Doctors and nurses can only do so much. Patients need to get plugged in, learn as much as they can about their disease even if it’s uncomfortable, be honest with the provider about symptoms, side effects, feelings, etc., and ask questions. If they are not getting answers from their current provider, they should find another one. Oncologists do not have all the answers, but from my experience, they appreciate an informed patient who is actively participating in the conversation to help make decisions. It takes a team to treat cancer, and patients need to take an active role.