BERKELEY, CA USA (UroToday.com) - Almost 7-in-10 (68%) men with advanced prostate cancer do not report emerging symptoms that may be suggestive of advancing disease, according to a global survey intended to help drive men with advanced prostate cancer to speak up about their symptoms and get the care they need. Symptoms of advanced prostate cancer are the focus of a new educational initiative called Men Who Speak Up*, which was developed from survey results showing that, despite having significant impacts on daily life, symptoms may go unrecognized as being associated with cancer, or, even if they are recognized, patients may choose not to speak about them or take action, according to Brian Tomlinson, Chief Program Officer of CancerCare, the lead organization of the International Prostate Cancer Coalition (IPCC), the organization that commissioned the Prostate Cancer Symptoms Survey with the support of Bayer HealthCare.
The Prostate Cancer Symptoms Survey was conducted by the Harris Poll research organization and involved 505 advanced prostate cancer patients (n=410) and adults who care for someone with advanced prostate cancer (caregivers) (n=95). In the United States, the results showed that while 97 percent of patients say they feel comfortable discussing symptoms with their doctors, only 46 percent actually do at every visit.
“Conversations between men with prostate cancer and their doctors are not always easy – but they are vitally important, especially where symptoms are concerned,” said Shannon Campbell, Vice President and General Manager of Oncology at Bayer HealthCare.
Dr. Neal Shore, Medical Director at Carolina Urologic Research Center interpreted the goal of the survey. “What we were really trying to understand in the survey was how are patients perceiving changes in their symptoms—specifically pain—how are they assessing pain, how are their caregivers assessing pain; how are they communicating with nurses and with their physicians. How do their caregivers perceive this interaction?”
The survey was designed to capture views from a broad swath of individuals who touch the lives of cancer patients. “We were trying to embrace all of the stakeholders who were involved in the treatment of prostate cancer, focusing upon patients, caregivers, nurses, urologists and medical oncologists,” Dr. Shore said.
Survey questions included the likes of “When did you first notice any type of symptoms with treatment for your prostate cancer?” “Interestingly, Dr. Shore said, “…so many of the respondents reported lack of energy and fatigue,” The second most common reported symptom was pain, but, he said, there is a real disconnect between the time [patients] acknowledge their symptoms and when they went on to discuss them with their clinicians—whether a nurse or their physician.
*Through Men Who Speak Up (www.MenWhoSpeakUp.com), men with prostate cancer and their loved ones can download tools, including a symptoms tracker and a doctor discussion guide, to help make symptoms easier to identify and doctor’s appointments more productive.