Monday, October 26, 2009

What you don't know might kill you

Newsweek magazine has sagely reported in its current issue that the right doctors can make all the difference when it comes to treating cancer. What’s aggravating—and possibly even life-threatening—is that it’s next to impossible to know who the best doctors and hospitals are for the particular form of cancer you have.

The Newsweek article has done us a great service journalistically, which I hope adds to public indignation over how secretive most cancer centers are with their outcomes data.

The problem is that there are wide disparities in cancer diagnosis and treatment. Americans may have access to some of the best cancer care in the world, but there is no guarantee that any particular patient will receive it. My advice: the more complex or dangerous your cancer, the better off you are avoiding community practices and heading straight to an academic medical center. Their care is almost always better.

As I wrote in my previous post, knowledge is power and the healthcare system is woeful at providing information that would allow patients to make informed decisions. In cancer care, the stakes could hardly be higher. You have to play the odds on this stuff in the absence of objective data.

I struggled to make good decisions during my two misadventures with melanoma. It’s hard to think rationally when overwhelmed by the emotion of a cancer diagnosis. It was obvious to me from the start, however, that the local surgeon who removed my cancerous mole for lab analysis was not the guy to do a wide area excision, much less the lymphectomy that came later. He was simply too young, too cocky and too inexperienced.

So for surgery, I went to OHSU to be carved up. My oncologic surgeon was seriously deficient in people skills, but I can say now that he was very good where it counted most—in the surgical suite. Because I had two lymph nodes that were extracapsular, the very act of extracting them without actually spreading cancer cells required someone with first-rate hands. I’ll never know if his skill made a difference in my survival, but it’s definitely a factor I've considered.

The radiation treatments and immunotherapy that followed were done locally. Those protocols were fairly standardized, so there was less risk to having them done by oncologists in Corvallis. It was upon the advice of my radiation oncologist that I opted for lower radiation doses of longer duration (as opposed to higher doses but fewer of them) in order to minimize tissue fibrosis in my upper leg. I probably wouldn’t be running again if my leg was much stiffer than it is. I’m grateful for his care.

I have had several medical oncologists, however, and am hoping the local guy I’ll be seeing again in January is better than the other docs I’ve had. If I were to need further treatment, I’d be back to see a melanoma specialist at the Providence Cancer Center in Portland, with whom I had two consultations last year. Melanoma is not a rare cancer, but the center here only sees three or four patients a year. Providence treats many dozen.

The best places for cancer care are at major medical centers in big cities a long ways from Corvallis. I chose OHSU and Providence in my search for good doctors because they appeared to be much better than what was available here, and I wasn’t prepared to travel any further from home. I wish I had empirical evidence of their clinical superiority, but it’s not available. Some day it will be, and when outcomes data becomes widely available in general, the quality of cancer care is likely to take a quantum leap forward for all cancer patients.

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