Tuesday, May 27, 2008

A four-time cancer patient's notes

Carter aide Hamilton Jordan beat cancer three times over 24 years, finally succumbing recently to mesothelioma. In a memoir, he published his "top 10 tips for cancer patients," which the New York Times Well blog helpfully summarized, along with some more information about Jordan. I found these tips particularly resonant with my ES experience (follow the link for all of them):

No. 2: Seek and know the truth about your illness, and prognosis.

If you don’t have the facts, and don’t know the truth, you won’t make good decisions. It takes courage to ask questions about statistics and your prognosis.

No. 3: Get a second opinion.

We wouldn’t buy the first computer or cellphone we looked at. Shop around when your life is at stake….I got second opinions on all of my cancers.

No. 4: Determine upfront how broad or narrow your physicians’ experience is.

If you have something that your doctor says, “I’ve never seen this before,” get another doctor. You want your doctor to be very familiar with your disease.

No. 5: If you have a poor prognosis, or a rare form of cancer, try to get to a center of excellence.

If your doctor doesn’t believe he or she can cure you, you won’t believe you’ll be cured.

No. 6: Do not allow your caregivers to project their values, goals and expectations onto you.

In my book I tell the story of a 68-year-old man who was diagnosed with PCa (prostate cancer). And this man is in very good health other than the PCa. His 35-year-old doctor reasoned that since his life expectancy was only five or six years, that he recommended that the man do nothing for his PCa and told him it would take the PCa four or five years to kill him. This man wanted to live to be 80 or 85. He didn’t accept that. He had his prostate removed, and many years later he’s in good health, and probably will live to be 80 or 85. Don’t let your doctor project his or her expectations in life out on you.

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