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Learn to be your own best health care advocate, particularly if you have an ongoing chronic disease or a disability.

Monday, March 8, 2010

Winning Against Cancer

We are a nation of cancer phobes. For some of us, the fear of that dreaded disease rests somewhere in the back of our minds. For others, the fantasies never go away and people are jumpy enough to discover a new symptom every day. I had colon cancer twice and never had given the big C. a thought. When the diagnosis comes, instinct takes over. There is no time to ruminate. You have to move quickly.

Some crawl under the bed and assume fetal position. My friend Jon Alter went the other way a few years ago when he was diagnosed with a form of cancer he knew little about. Non-Hodgkin’s lymphoma is more dangerous than plain old, run of the mill lymphoma. Both used to be automatic killers but have morphed into chronic illness status.

These cancers cannot be cured, but there is at least a fifty percent, five year survival rate. Not great, but better than it used to be. Jonathan Alter was diagnosed with non-Hodgkin’s lymphoma in 2004 and lived to write about it in Newsweek, where he is a columnist.

Jonathan is a journalist and it showed when cancer came calling. The man knows how to ask questions and learn what he feels he has to know. All of us need to do that. Too many hang back and do what they are told. Not everybody is as self-assured or a quick study like him.

Jonathan more or less co-directed his care. He made final decisions on the therapies of choice and where in the U.S. he would go for treatment. In short, he took responsibility for charting his course.

The Newsweek editor and columnist did so in consultation with the best specialists around, but he knew he had to be part of the solution. The more patients participate in decision making, the better the outcomes.

Not everyone has the skill or temperament to be so aggressive. Patient passivity is common and very disconcerting. We show more care and do more checking when we purchase consumer items than in choosing our doctors. Apparently cars and TVs are more important to us than our health.

We just throw ourselves into a doctor’s hands and instruct him or her to cure us. No questions asked. Frequently it is a referral, which means we probably do not know the person. Do we shop around? No. One doc tells us to go to another doc, and we obediently do it.

A doctor tells us to jump, and we do not ask why but rather how high? I do not get it. I know a cancer patient in the Midwest who was frustrated because he was offered too many options. He was angry his doctor did not simply tell him what to do.

What is wrong with this picture?

You learn a lot about yourself with a cancer diagnosis. Are you going to dissolve and be mopped off the floor like spilt milk? Rising up and locking horns with the enemy is less a critical tactic for survival.

A patient cannot be dissatisfied with the doctor but sit back and just follow orders.

Perhaps patients hang back passively for a reason. There is a straight-forward question that needs to be answered. Are patients intimidated, even afraid of their doctors?

Patients often don’t know when to speak or not be heard.

Doctors are not necessarily the most approachable people on the planet. Do you think your doctor wants to hear your opinion about what should be done? Add your comments to this discussion in the Chronic Disease & Disability Exchange.

Posted by: Richard M. Cohen at 4:03 pm