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Wednesday, January 04, 2006

The Patient From Hell

I promise that this is the last medical book I will read for at least three months. It'll be pretty hard to top this one anyway. The full title is The Patient From Hell: How I Worked With My Doctors To Get the Best of Modern Medicine and How You Can Too by Stephen H. Schneider, Ph.D with Janica Lane (DaCapo Press, 2005). As a climate scientist, Schneider is concerned with the effects of global warming and all those other nasty things that are happening to the planet as we continue to despoil it. He's also concerned with something particularly nasty that's affected him a little more personally -- mantle cell lymphoma which is right up there near the top of the list of the things you don't want to experience. As a scientist Schneider has a great advantage over the typically afflicted patient but none of that really helps him in his battle with the medical establishment. Starting with the premise that "no doctor has all the answers" (there are often no answers, only odds), Schneider sets out to obtain the best possible treatment for his cancer.

With the exception of one rather slow chapter in which Schneider discusses his work as a climate scientist (he can be forgiven for this), this book is pretty hard to put aside. All the gruesome details of his struggle with a bone marrow transplant are here and they provide a valuable resource for anyone who finds themself in his situation. Even though Schneider as a scientist has a definite advantage in his knowledge and his affinity with doctors, his struggle to get the best treatment is by no means an easy one. Scientist or not, doctors view any patient who expects individualized treatment to truly be "the patient from hell." If you follow his trailblazing efforts, you can learn the following:

  • how to obtain and interpret odds
  • how to seek better treatments that may not fit the usual "standard of care"
  • how to get treated as a unique individual and not the mythical average patient
  • how to recognize the decisions that you, rather than the doctor, must make
  • how, most important of all, to build a partnership with sometimes reluctant doctors

The most fascinating part of the book is the information about cancer and remission. I have never read anything that lays out the situation so clearly or so compellingly. Before he began his treatment, Schneider had 800,000 cancer cells per microgram of DNA in his tumor and 200,000 cells per microgram in his bone marrow fluid. As incredible as that sounds, later in the book Schneider contrasts two possible treatment options. The starting point for the patient is 100 billion cancer cells. Now that's a lot of cancer!

One course of treatment reduces the amount to 100,000 cancer cells, the second treatment reduces it to 1,000 cancer cells. It's pretty obvious in looking at those numbers that no course of treatment is going to completely kill all those cancer cells. Remission is a relative thing. You can only hope that your treatment gets the remaining cancer cells to a level low enough for your immune system to keep them in check. And here Schneider throws out an interesting idea -- "it is possible that everybody has a very low number of cancer cells all the time; the key is to make sure your body's natural defenses continue fighting them."

Knowing that by the time a CT scan can detect a return of your cancer, when it may already be too late to beat the recurrence, Schneider relies on PCR (polymerase chain reaction) -- a test on the blood using PCR can detect very low cancer cell counts and by monitoring your PCR level you can see how the cancer is progressing or being held in check. PCR is obviously the best way to monitor this but my impression is that its use is not as widespread as it deserves to be. This bears a lot of further research.

A highly recommended book that I simply cannot praise enough.


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