Christine Gray has written a great article, Online cancer resources invaluable for empowering parents of sick children, on The Health Care Blog. Her story is a valuable lesson not only for parents of children diagnosed with cancer but for everyone that hears the unfortunate phrase ‘it was malignant’. We have outstanding treatment options for every type of cancer but it’s a mistake to think you’ll get it by just going to the oncologist you were referred to. You may, but it’s up to you the patient to make sure.
I quickly learned that even though I had a kind, well regarded doctor, he didn’t have the expertise to handle my case. What I needed was a team of physicians that see hundreds of cases a year of my type of cancer. A team, not a doctor. Treatment frequently covers a lot of disciplines, surgery, chemo and radiation. I eventually landed at Moffitt Cancer Center and met with a surgeon. He told me what he thought my treatment plan would be but quickly qualified “I can’t do anything until the full cancer board approves your plan.” I didn’t have to go to each type of doctor, records in hand, and hear what they thought their part of the treatment should be. I had a team, all meeting together and determining the best course of action.
Don’t be passive! Richard Bloch summed it up nicely:
Hamilton Jordan, White House Chief of Staff under President Jimmy Carter, upon being diagnosed with cancer at the age of 41, stated, “One of my closest friends is a doctor, and he came to see me one day and said, ‘You’re going to have to manage your own damn medical care.’ That shocked me. It put a sense of burden and responsibility on me that I wasn’t sure I could exercise properly. But as I saw things unfold, I saw he was right. Although it was tempting to stay at (the hospital) and be among all my friends, and the (hospital) doctors thought they could do as good a job as anybody, I realized there were many choices to be made, and I had to make them for myself.” Fighting Cancer by R. A. Bloch
You’re going to have to manage your own care but you do not need to do it alone. Use the resources Christine listed. Become a Google fiend. Find out what’s valid science and what’s quackery. Act.
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