DENVER - Treatment decisions for localized prostate cancer tend to be driven more by patients' fears and misconceptions rather than by understanding of the evidence, according to accounts of newly diagnosed patients.
DENVER, June 27 - Treatment decisions for localized prostate cancer tend to be driven more by patients' fears and misconceptions rather than by understanding of the evidence, according to accounts of newly diagnosed patients.
A deliberate and thorough decision-making process is uncommon, suggest structured interviews with 20 men (age 54 to 80) diagnosed with localized prostate cancer, said Thomas Denberg, M.D., Ph.D., of the University of Colorado here.
Instead, fearful that the cancer might quickly spread, more than half of the men expressed the desire to have it treated as quickly as possible, even though most knew prostate cancer is slow-growing, Dr. Denberg and colleagues, all internists, reported online in the journal Cancer.
"In fact, a majority of patients were uninterested in obtaining a second opinion, typically because of concerns that this would delay treatment and increase uncertainty," they wrote. "Also, several patients erroneously declared that the only purpose of a second opinion is to confirm a diagnosis. Second, most patients had influential misconceptions about treatment, especially prostatectomy.
"Their beliefs were highly polarized: one group of patients avowed that prostatectomy is the best way of guaranteeing cure while another group asserted that it is very drastic or dangerous. Finally, almost all patients relied on anecdotes-stories about other people's cancer experiences-to make sense of their own diagnosis and treatment choices. For the most part, these stories did not accurately match patients' own clinical circumstances."
The men fell into two broad groups: those who wanted to have surgery, and those who wanted to avoid surgery. Even though the men had discussed a range of treatment options with a doctor, most had misconceptions about the risks and benefits of surgery.
One common misconception, the authors wrote, was that a prostatectomy is the best way to guarantee a cure. However, they added,, radiotherapy has similar, and occasionally slightly better, five-year progression free probabilities.
Another common misconception, they said, is that rapid surgery is most advisable to avoid the possibility that the tumor will spread locally or suddenly metastasize. However, they added, the likelihood of transformation to rapidly progressive disease is remote and does not justify immediate prostatectomy.
Men are often informed that surgery abolishes uncertainty if the postsurgical evaluation shows that the cancer is confined to the prostate. Yet, the authors added, possible micrometastases and local recurrence necessitate prolonged post-prostatectomy PSA surveillance.
They had misconceptions about the risks of surgery and anesthesia and the pain and recovery periods.
None of the patients compared treatment options in terms of their side effects. In fact, nine of the 20 men did not consider side effects at all. One man said that side effects "are not important compared with dying."
Although a urologist had reviewed the major side effects of each form of treatment, the men's recall of this information was poor and inaccurate, the investigators said. "Several patients confused radiotherapy with chemotherapy, erroneously suggesting that the most common side effect of conformal beam radiotherapy is hair loss," the researchers said.
Nineteen of the 20 men based their treatment decision in part on anecdotes about cancer experiences from friends and family, even when the anecdotes were not relevant to their own situation. "For example, one patient with localized, potentially curable disease compared his circumstances with that of a cousin whose disease was regionally advanced and hormone refractory," the investigators said.
The majority of men (16 of 20) did not get a second opinion, believing this would only delay therapy and add to their fear, anxiety, and uncertainty, the investigators said.
"In summary, although fear is to be expected and may be necessary for motivating serious deliberation and action, it overpowered reason in ways that were not rectified through the simple provision of accurate health information," the authors said.
"To address these challenges, clinicians should strive to meet patients closer to where they actually begin the decision-making process. Explicitly describing common misconceptions may allow patients to consciously recognize and correct them. Sources of patient fear can be elucidated and, where possible, reassurance can be offered," the authors said.
"Patients can be asked to recount stories about other people that influence their attitudes and perceptions about prostate cancer, or can be connected to other individuals who have faced similar decisions in the face of comparable risk. Then, they can be helped to understand key differences between these stories and their own circumstances," they said.
Dr. Denberg and colleagues concluded that "ideally, each patient would base his decision on accurate information, weighing all options in terms of the likelihood for tumor recurrence, personal preferences for avoiding specific treatment related side effects, and pragmatic considerations such as cost, convenience, and requirements for follow-up care," said.
The authors noted several limitations of the study: