The Importance of Full Education for Patients As Well As Family and Significant Others

by Laura Li
Why Active Surveillance is Not Yet Widely Adopted

Laura

Some experts have concluded that Active Surveillance has not yet gained “mainstream” prominence in the world of prostate cancer partly because newly-diagnosed patients and their families are often not receiving in-depth education about the option of active surveillance compared to treatment options and the complications from treatment.

As essay published in the Journal of Clinical Oncology states that many prostate cancers would never cause any impairment to quality or quantify of life if undetected and are thus said to be “overdiagnosed.” The essayists, led by Matthew R. Cooperberg, M.D., of the University of California at San Francisco, write that for every man saved by active treatment, “others have been exposed unnecessarily to the risks and adverse effects of treatment.” Even though doctors provide professional advice, it is also a patient and his family’s responsibility to make sure that they make a fully informed decision about treatment options.

Medical/Urologist Biases in Favor of Surgery over Active Surveillance

According to Cooperberg and his coauthors, “doctors’ financial concerns, together with perceived medicolegal risks and cultural biases in favor of aggressive treatment, may conspire to keep active surveillance a relatively uncommon management strategy.” Active Surveillance doesn’t compensate as well as active treatment does, and some clinicians may express a medicolegal concern that active surveillance may somehow cause a patient to miss a window of opportunity. However, the essayists state that “no report yet published has provided evidence of impaired likelihood of cure after a period of careful surveillance.” In addition, most litigation related to prostate cancer stems from complications during or after surgery.

Some urologists may not yet be comfortable with active surveillance. In an article from Medscape, Richard Lam, MD, from Prostate Oncology Specialists in Marina del Rey, California, said that urologists are taught to simply take out the cancer. “It takes a lot of time and empathy to communicate the concept that most prostate cancer is a slow growing disease that doesn’t kill people,” he said. “Urologists don’t do this.” Although urologists are, of course, deeply concerned about their patients, it’s impossible to ignore the aspect of self-interest and a bias towards surgery. Cooperberg and his colleagues go on to suggest that “modifying relative financial incentives may help increase uptake of active surveillance.”

It becomes clear that patients and their families need to be proactive in educating themselves on the best options for dealing with prostate cancer.

Patients Feel Internal Pressure to Fight Cancer

In an article for Our Voice magazine, Dr. Tom Pickles, a radiation oncologist at the British Columbia Cancer Agency, describes factors that inhibit patients from choosing active surveillance.

“People may feel internal pressure to ‘fight’ or ‘combat’ the cancer so as to maintain a sense of control,” he writes, and it’s easy to understand why a patient or his family would feel a need to immediately deal with the disease using aggressive treatment. Yet, “minimal-risk prostate cancer poses an extremely low danger to men’s lives,” Dr. Pickles writes.

Pressure can also come from experiences with other types of cancer. For example, those familiar with the typically rapid growth rate of breast cancer might be biased toward aggressive treatment regarding prostate cancer as well. If family members of prostate cancer patients have this kind of impression about all cancers, they might advocate for active treatment in hopes of lengthening the patient’s life, without knowing that a prostate patient’s chances of living longer due to treatment are not guaranteed. The only way to combat misinformation is a determined effort to obtain as much comprehensive information as possible.

Education of Family Can Help

Meredith Kazer

Meredith Wallace Kazer, Ph.D., APRN, A/GNP-BC, FAAN interviewed patients who switched from active surveillance to active treatment. An Associate Professor at the Fairfield University School of Nursing, Dr. Kazer said that a key factor in the decision-making process is the influence of family members or significant others, who undoubtedly want to extend the life of the patient as much as possible, Dr. Kazar said.

Dr. Kazer believes that it is often the family members and significant others who haven’t spent enough time to fully understand active surveillance as a viable option for men with low-grade prostate cancer. Improved education about the purpose and benefits of active surveillance as well as psychosocial support throughout the disease trajectory may enhance informed decision-making and play a part in reducing the dropout rate of patients undergoing active surveillance when there is no disease progression.

Two Highly Supportive Organizations

When participating in an active surveillance program, one of the time-consuming challenges for the patient,family members and significant others is to stay well-informed on the latest developments. Because medical centers and medical practices do not receive compensation for the education of their patients, the time spent educating patients is normally quite limited. However, an institute that offers the latest information about prostate cancer and active surveillance is the Prostate Cancer Research Institute (PCRI). In addition to providing the latest scientific findings on their website, PCRI offers a unique helpline, (800) 641-PCRI, where both patients and family members frequently call in and speak to a knowledgeable helpline staff member.

It can also be useful if a patient can find another patient who has been down a similar path. A prostate buddy or mentor can provide essential support and information. Many patients already consult with other active surveillance patients. Us-Too is an organization that has thousands of support group members throughout the U.S. that can be helpful. At its extensive website, Us-TOO lists phone numbers and email addresses to chapters throughout the U.S. By contacting a chapter, a patient and family members can often find a mentor or someone with more experience to help point the way.

Active Surveillance is indeed an active method of dealing with prostate cancer, but continuing education is needed to successfully sustain Active Surveillance.

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