Taking control, sort of

My husband and I lunched with a friend today who had Stage III colon cancer in 1991. After I described my various chemo-related dilemmas, my husband asked the friend how he weighed the options in his own case.

“I didn’t,” the friend said, because no options presented. The doctors said what they were going to do. The friend did it. That was that.

It wasn’t that my friend was an unusually passive patient. In fact, he’s a very bright guy — and a medical journalist, to boot. But that was a time when doctors ran the show and patients had minimal input.

Times have changed.

Certainly, I’m seeing now how medical care has become more patient-driven. Patient records, for instance, were once treated like state secrets as far as the patient was concerned. By contrast, my surgeon handed me Xeroxed copies of my pathology reports and I was given my CT scan on a disc, if I care to look at it. Compared to my friend, I’ve also been given a menu (albeit somewhat limited) on treatment options.

On one hand, there’s no question that I feel like I’m in over my hand in making these decisions — how do I know any better than a doctor? On the other hand, it underscores that medicine is as much art as science, and there’s often not a definitive “right” answer.

Here’s an example. I recovered from my colon resection surgery much quicker than expected, and my sister Marcia has speculated that one reason was the surgeon’s very aggressive stance on post-surgery pain control. For several days, I was hooked up to an epidural that pretty much left me pain free — and because I wasn’t experiencing pain, I was much more willing to leave the bed and walk around, things that contribute to a quick recovery.

But the post-surgical epidural is not standard treatment. It’s a choice left to the surgeon, and many don’t go that route because in some cases it can complicate recovery.  (For instance, it can make the legs so numb that sitting up or walking becomes impossible.) So I got  lucky: I happen to get a surgeon who prescribed the epidural, and I happened to be one of those patients where it works like a charm.

On my chemo, I’m sure there would be broad consensus among oncologists that I should have it done, that the benefits outweight the risks. And the protocol seems to be pretty standard — six months involving certain drugs. But there are variations on a theme within those broad strokes, and different doctors have different preferences. My challenge now is to make sure the chemo works out as smoothly as the surgery — that my doctor’s preferences line up with my own needs, and so I’m spending a lot of time on the Internet, reading everything I can find on the colon cancer chemotherapy.

For the surgery, I got lucky.  For chemo,  I’m not just leaving it up to luck.

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One Response to “Taking control, sort of”

  1. Bill K. Says:

    Julie: You might mention that while I didn’t have any options re the chemo in 1991, I did stop after four months instead of going the full year. Thanks.

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