I was officially diagnosed with cancer three years ago today. I had undergone four scans and the results were solid. I had a 13cm tumor growing on my left kidney. I was scared. I was more scared than I ever had been. I didn't have any idea what to do and I felt as if my life was spiraling out of control.
I really wanted to gain control over the situation. Even if the results were going to be lousy, they wouldn't be lousy because I sat back and did nothing.
I started sharing. It was simple at first. I simply said, "I have cancer."
I immediately started connecting on a different level. I was a cancer patient. I needed help. I needed information. I needed a cure. There was a sense of urgency. I had only three weeks until my first scheduled surgery. What would happen after that? Where would I go and what should I do?
Along the course of my treatment and growth as a patient, I turned the tables. I didn't even realize it was happening. I started hearing more people say, "I have cancer. I don't know what to do." and I tried to help whenever I could. I needed less guidance and could provide assistance instead.
Today I am here to share something that is very important to me. I have a potential treatment in front of me that is the only statistically proven treatment to cure kidney cancer. The challenge is that it works less than 10% of the time, much less. I asked my Dr what makes a successful patient? What are the qualities that would allow us to reasonably deduce I might have an 80% chance of success. (On a side note, this treatment is incredibly toxic and death is a common side effect. I really want to know it has a good chance of success before I get on to that table!)
With a sense of defeat, he replied, "We don't know."
What?!? This treatment has been around for over 30 years! We don't know what criteria makes a successful patient? That's utterly insane.
We need to share more medical data. There is no excuse for me having to guess or play pin-the-tail on the donkey with medical choices.
I am a member of PatientsLikeMe (www.patientslikeme.com) and I am committed to leaving a medical legacy for the next patient. I want to help the next person diagnosed with kidney cancer.
PatientsLikeMe is kicking off "24 Days of Giving" on December 2, Giving Tuesday. We're encouraging you to donate your time, talent, or treasure to your favorite charity. If you are a patient with a chronic condition, you should also donate your medical data.
If patients and doctors had donated data over the last 30 years, I might be able to make a better medical choice.
I use PatientsLikeMe to share my data in the hope that others living with cancer can learn from my experience and help fight their own battles better. When I donate my data to an organization that can aggregate it and see a pattern or meaning, I’m not just helping myself, I’m helping all of the other people who are living with cancer, and their doctors.
Save the next patient.
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