Related topics: •  Book Review: Hit Below the Belt •  Book Review: Prostate Cancer Guides

Adam's Burden: An Explorer's Personal Odyssey Through Prostate Cancer
By Charles Neider
Madison Books
292 pp $26.95

This is not an easy book to read. Not that it isn't well written and informative. But for a guy, especially one pushing 40, reading about bad things that happen "down there" is about as much fun as a kick in the cojones . We may take it like men, but please, spare us the gory details.

Such squeamishness may explain why prostate cancer is one of the leading killers of older men, even though it is a curable disease -- if detected early enough and treated aggressively. Therein lies the rub. A thorough test for prostate cancer involves dropping your trousers and hearing the sound of your doctor snapping on a latex glove as he prepares to perform a digital rectal exam. Loads of fun. And then there's the cure, which may leave you partially incontinent and impotent.

Simply put, a lot of men apparently would rather die than have a doctor perform a DRE (digital rectal exam) or be caught shopping for adult diapers at their local Safeway. And so they do. Compare the situation to the well-organized movement to educate women about breast cancer and pressure politicians and drug companies to pursue new treatments for the disease. There may be a few groups like former junk bond king Michael Milken's Association for the Cure of Cancer of the Prostate. But there's no comparable campaign for prostate cancer; we're not barraged with big public service announcements urging men to get a prostate-specific antigen test.

So it's largely up to you to educate yourself about prostate cancer. That's where Charlie Neider comes in. An author, photographer, noted Mark Twain scholar, and Antarctic explorer, Neider was 78 years old when he was diagnosed with prostate cancer in 1993. He began keeping a diary and the result is Adam's Burden. "My hope is to offer readers the benefit not only of my experience but of the experience of others; to lead them step by step through what they are likely to encounter; and to help them understand and to cope," Neider writes.

That he does, in great and often excruciating detail. When he learned of his condition, Neider focused his formidable intellectual curiosity on what would become his last major exploration -- that of his own body. Neider ultimately lost his fight against cancer and died on July 4, 2001 at the age of 86. That he survived eight years after being diagnosed at an already advanced age may well owe something to the educated choices he made. Just as important was his quest to know anything and everything about his prostate cancer, its treatment, what it was doing to his body, and the disease's effects on the fellow patients to whom he turned for group support.

Neider was not one to blindly follow doctor's orders -- though he was fortunate to receive apparently excellent care -- and the most important lesson of his book is this: Ask questions. Perhaps the saddest stories in Adam's Burden are about people like Neider's cousin Murray, a prostate cancer sufferer who preferred to remain in the dark about his disease. Murray's doctor, for instance, never told him his Gleason score, a statistical indicator of a patient's chances of surviving prostate cancer and thus a critical factor to consider when choosing among treatment options.

Another of Neider's cousins, 71-year-old Erik, did not know his Gleason score and took his doctor's advice to have a radical prostatectomy -- full removal of the prostate gland. The surgery left him initially incontinent and later impotent. Only after his surgery did Erik discover, at Neider's urging, that he had the same middle-range Gleason's number as Neider, who was informed about the range of possibilities and chose to have radiation therapy, which has a lower risk of causing those twin maladies.

"Murray had told me he wasn't interested in such details; that the less he knew about the details of his condition (including the details of radiation therapy), the happier he was," Neider writes. "I wanted to know as much as possible, for intellectual reasons; but also, and primarily, because I want to participate in making decisions that can affect my health and possibly my survival. I resent being kept in the dark by doctors. I dislike playing the trusting, blind child with them, because I know from experience that, like all humans, they're fallible."

Willful ignorance can come at a high price. Depending on the prostate patient's age and the severity of his disease, different treatments have different consequences for long-term survival and quality of life.

For example, a man in his 50s who elects to have radiation therapy instead of having his prostate gland removed may run a higher risk that the cancer will return later in life -- though the American Academy of Family Physicians says the overall cure rate is about the same. On the other hand, an older patient might prefer the less invasive option of radiation therapy, given that his natural life span is drawing to a close. "Being 78, I realized my time was short in any event. (You can argue with statistics just so far.)," Neider writes. And men of advanced age and low Gleason numbers may chose to just monitor their cancer, as they are likely to die of other causes first.

These days, of course, voluminous information on prostate cancer is just a mouse click away at reputable health Web sites. What Neider does is to put a human face on the disease, making sense of the jumble of medical jargon and confusing array of treatment options for prostate cancer.

He does that by sharing his day-to-day diary, from diagnosis through treatment and post-radiation recovery. The general reader may occasionally find a bit tedious the author's tendency to go off on tangents -- such as when he devotes page after page to describing the goings-on at a general cancer support group he attends while visiting California. And Neider's accounting of the minutiae of his bowel movements, urinations, and associated complications may not be everyone's idea of riveting reading.

But I suspect that those readers with reason to pick up this book will be glued to the page. Not just for the medical information that Neider skillfully weaves into his dialogues with his doctors, nurses and fellow patients, but for the insight into the author's psyche as he comes to terms with prostate cancer and his changed life.

There are more than a few moments of despair as the enfeebling side effects of radiation treatment cramp Neider's previously active lifestyle. Invariably, though, his determination to engage his disease head-on carries him through. That and the occasional shot of vodka before heading off to the oncology center for a dose of radiation.

Neider's last entry is January 9, 1995, 19 months after he completed the radiation therapy that sent his prostate cancer into remission. "I've wondered, from time to time, how to end this story, and have concluded that it has no formal ending, for who knows what the next several years may bring if I survive them? And so I've decided that this, a high note, is as good a place to end as any. I'm one of the lucky ones. My prostate was watched early, and the cancer was diagnosed while it was still 'curable,' and at a relatively late stage of my long life. Time to say, 'So far, so good.' "

Indeed. Prolific as ever, Neider published two books in the months before his death. I'd bet he was asking questions right up to the end.

-- Todd Woody is a former senior editor at The Industry Standard, where he also covered the Internet health care business. His work has appeared in The New York Times, the San Francisco Chronicle, Columbia Journalism Review, and other publications.

First published March 7, 2002
Last updated February 14, 2008
Copyright © 2002 Consumer Health Interactive