Don't Be Afraid To Participate In Treatment Decisions

PJ Hamel Health Guide
  • If you’re a Prime Time Woman—which is how marketers refer to those of us between the ages of 50 and 70—you grew up thinking doctors Knew It All. There was never any thought of self-diagnosis, or back-and-forth dialogue about treatment. Your parents took you to the doctor when you had a sore throat, the doctor told you to gargle with salt water; or he (yes, he) gave you some medicine, and that was that. You were the patient, subservient. He was the doctor, in charge.

    Now, every medical issue that warrants a visit to the doctor is preceded by Internet research, which in turn engenders a list of questions to ask and possibilities to discuss. No longer do we allow ourselves the luxury of being simply patients. Now we feel obliged to be informed, to come to the table armed with knowledge, opinions, and a preferred course of action.

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    Which certainly makes healthcare more complicated—for us, and our doctors. The question is, does this increased level of medical knowledge also make us healthier, in the long run? Or simply more stressed, more helpless under a barrage of sometimes conflicting online factoids?

    Last Friday I met with the woman helping me manage my osteopenia. Beth is a nurse practitioner specializing in bone health for cancer survivors. I’d first met with her in June; we’d mapped out a plan of increased calcium and vitamin D, along with the strong exercise program I’d already been following, to try to slow my bone loss. I had a DEXA scan in late November; and Friday we looked at the results together.

    Unfortunately, the increased supplements haven’t helped me. That information, in conjunction with new data about the cancer drugs I’m on causing rapid and perhaps irreversible bone loss, made it clear that a change of course is necessary. Beth had discussed my case with several physicians, and they recommended a bisphosphonate.

    But which one? My oncologist says Fosamax. But the research I’ve done while posting on this site makes me leery of that drug. My gut says that it’s going to be another Vioxx; REALLY effective, millions of people taking it, then BOOM: withdrawn from the market due to long-term, adverse side effects.

    And why do I feel that way? Because the drug is still new enough that the long-term data isn’t there. Because the trickle of bad news concerning Fosamax hasn’t become a flood, but it’s definitely increased to a steady stream.

    Case in point: On December 31, it was learned that the FDA has received information that 23 patients on Fosamax having developed esophageal tumors, eight of whom died. In addition, 21 cases in Europe and Japan have been reported.

    And on January 1, the Journal of the American Dental Association featured an article describing the proportion of patients taking Fosamax who developed ONJ, a serious jaw disease, as much higher than previously thought.

    Reasons for concern? I asked Beth; she hadn’t yet read the articles. I’d earlier asked my oncologist about an upcoming court case involving 600 New Jersey women suing Fosamax manufacturer Merck for damages as a result of ONJ; he hadn’t heard of the suit. 

  • Am I currently better informed about the risks of Fosamax than my medical team? Or am I doing something that my medical team knows, from experience, NOT to do: taking tiny bits of information and building them into a case against Fosamax that simply doesn’t hold water?

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    Beth, rather than flat out tell me to take Fosamax, listened to my concerns, as well as my suggestion of Actonel as a possible alternative.  She said she’d research Actonel vs. Fosamax, and any possible interaction between Actonel and the cancer drug I’m taking—something I hadn’t considered. So I’ll wait to hear back from her.

    Thinking about my appointment afterwards, I realized it was probably a pretty good example of a balanced patient/doctor relationship. The medical pro isn’t 100% right all the time; with so much treatment information changing so quickly, no one can be completely informed. And the patient doesn’t have the knowledge, education, or experience to self-treat, based solely on information gleaned online.

    So we compromise: I put on the table what I’ve read; the doctor or nurse listens, perhaps learns, but mostly uses his or her superior knowledge and skills to correct, amend, or refute; and we plan my course of action—together.

    We, the patients, need to remember that we are NOT doctors, and don’t possess the breadth and depth of knowledge and experience that lead our physicians and nurses to make good, solid decisions. But the days of the silent patient are over. Reasonable and effective collaboration is the name of today's game.

Published On: January 22, 2009