HARTFORD, Conn. – It may be the most important decision of their lives, yet most men base their choice of prostate cancer treatments on incomplete information.
The finding comes from a review of studies looking at how men decided what to do when they learned they had early stage prostate cancer.
One huge complicating factor underlies the decision how — and whether — to treat prostate cancer: There's no clear evidence that any one treatment is more effective, or has fewer side effects, than another has.
At least for some men, there's not even good evidence that treatment is better than watchful waiting, says Steven Zeliadt, MD, PhD, research scientist at the Fred Hutchinson Cancer Research Center in Seattle, who worked on the study.
"As a culture, we just don't like not knowing. So we tend to ignore that there is no information, and we find some way of being encouraging about treatment," Zeliadt tells WebMD. "Over and over and over again in these studies, men would bring up the issue of treatment side effects. But when it came down to it, among the factors that made them decide, side effects played a very small role. Ironically, that is the only area of treatment we have a lot of information about."
It's an important study, says Robert A. Smith, PhD, director of cancer screening for the American Cancer Society.
"What this particular article is addressing is very, very important," Smith tells WebMD. "People bring different preferences to bear in prostate cancer treatment decisions. But it is not clear these preferences are matched with the broad amount of information on what to do. It is hard."
The Zeliadt study appears in the May 1 issue of the journal Cancer.
How Men Pick a Prostate Cancer Treatment
Once a man hears the words, "you've got prostate cancer," he's faced with a choice. Because prostate cancer usually grows very slowly, he may choose watchful waiting. That means doing nothing more than having frequent checkups to make sure the cancer isn't spreading. Most men, after all, die with prostate cancer, not from it.
Men who want to do more — and most do — face very different prostate cancer treatment options. For most men, these choices boil down to surgery or radiation therapy.
Most men, Zeliadt and colleagues found, want to pick the treatment that is most effective at curing their cancer. And this is where the system breaks down.
Urologists who do surgery are most likely to say that surgery is the best treatment. Radiation oncologists are more likely to say that one or another radiation therapy is best. Yet there's no reliable proof that any of these relatively effective treatments is better than another, says prostate cancer researcher Timothy J. Wilt, MD, MPH, professor of medicine at the Minneapolis VA Center for Chronic Disease Outcomes Research.
"Making a prostate cancer treatment decision is quite difficult," Wilt tells WebMD. "It is made more difficult because it involves many different medical specialties with competing, well-intentioned beliefs of effectiveness, what doctors practice, and what they might get reimbursed for."
While the effectiveness of most treatments is roughly the same, the treatments do differ in important ways. These differences lie in their side effects.
"There just are a lot of side effects, period," Zeliadt says. "And that is downplayed in the discussion about prostate cancer treatment.”
"In general, doctors are more optimistic about treatment benefits and — at that minute they tell a man he has prostate cancer — they devote less attention to the risks and side effects," Smith says.
Zeliadt found that men worried a lot about side effects. But they tended to choose a treatment not because of how well they think they can tolerate the side effect but because of how well they think it would work. And the factor that sways their decision doesn't always come from a reliable, unbiased source.
"Men hear all this different information, and they tend to latch onto something," Zeliadt says. "It may be something the doctor said, the fact that their uncle died of prostate cancer, or something a neighbor said. It seems sort of random. In one study we reviewed, they came up with list of 93 questions men had about prostate cancer. And no two questions were on the top of any one guy's list. They just have so many different information needs. It is all over the place."
Choosing a Prostate Cancer Treatment
Every expert who spoke to WebMD said the same thing. Eventually, a man facing prostate cancer will ask his doctor, "Doc, what would you do?"
"It is my personal belief that a doctor should not say what he or she personally would do," Wilt says. "Unless they come back with a treatment choice that I think is out on the far end, I just would not know what I would do, or what I would tell my father to do — because my father and I are not you."
Wilt, Smith, and Zeliadt say it's essential for a man to consider each of the possible side effects of treating, or not treating, early prostate cancer. They also agree it's essential for every man to make his own choice.
"My job is to give you the information in the most balanced way and to understand what is most important to you," Wilt says. "That allows me to support you in that choice no matter what happens."
Zeliadt suggests that men focus on their own situation and on their particular needs.
"I would encourage men to forget all the information they have heard from other men. It probably does not apply to their scenario," Zeliadt says. "They should really think about how they would adjust to the different side effects of treatment and have that be an important consideration. There is probably not a wrong decision about survival you can make. All the different treatment options are pretty close to being excellent. And that includes watchful waiting."
When a man does make his decision on prostate cancer treatment, Smith says, he tends not to regret it — even if the outcome isn't as good as he'd hoped.
"The real issue for the doctor is how do you prepare and present authoritative information so that whatever decision the patient makes, he feels he made the right one at the time and knew what to expect afterwards," Smith says.
Unfortunately, there's still a long way to go before doctors can offer men more help with these questions.
"We may have been placing a lot of emphasis on questions about testing, and we need to place more emphasis on questions about treatment," Smith says. "Because men have to feel confident later that they had made the right decision."
By Daniel J. DeNoon, reviewed by Louise Chang, MD
SOURCES: Zeliadt, S.B. Cancer, May 1, 2006; vol 106: advance online edition. Steven Zeliadt, MD, PhD, research scientist, public health sciences division, Fred Hutchinson Cancer Research Center, Seattle. Timothy J. Wilt, MD, MPH, professor of medicine, Minneapolis VA Center for Chronic Disease Outcomes Research. Robert A. Smith, PhD, director of cancer screening, American Cancer Society.