Survey shows most men with advanced prostate cancer ignore their symptoms as disease progresses

While men living with advanced prostate cancer experience a range of symptoms like severe or unexplained pain, difficulty walking or climbing stairs, difficulty sleeping and loss of bladder control, results of a Harris Poll survey show that nearly 7 in 10 men (68 percent) sometimes ignore the symptoms of prostate cancer, potentially risking their health and delaying further treatment for their advanced disease. The symptoms of advanced prostate cancer are the focus of a new educational initiative called Men Who Speak Up, which is shaped by the survey results.

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Prostate cancer is the second most common cancer and the second leading cause of cancer-related deaths among men in the U.S. The International Prostate Cancer Coalition (IPCC), with the support of Bayer HealthCare, commissioned Harris Poll to conduct the Prostate Cancer Symptoms Survey to understand how men living with prostate cancer interpret symptoms that could indicate advancing disease. The survey of 410 men with advanced prostate cancer and 95 caregivers reveals that 39 percent of men surveyed have waited to tell their healthcare team about symptoms they were experiencing, even though more than half (52 percent) associate symptoms like pain with their prostate cancer getting worse.

Brian Tomlinson, Chief Program Officer of CancerCare, the lead organization of the IPCC said:

Advanced prostate cancer symptoms have a very real impact on daily life, but many men don't always recognize them – and even if they do, they may not speak about them or take action, today we launch Men Who Speak Up as part of a national effort to drive men with advanced prostate cancer to speak up about their symptoms and get the care they need

While early stage prostate cancer can cause no symptoms, symptoms may emerge as the disease progresses.3 The most common advanced prostate cancer symptoms experienced by survey respondents with bone metastases (cancer that has spread to their bones) include fatigue (85 percent), pain or aches in specific areas (71 percent), general all-over-body pain or aches (55 percent), numbness or weakness (55 percent), difficulty sleeping as a result of pain (42 percent), anxiety or distress as a result of pain (40 percent) and difficulty doing normal activities (40 percent).

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.

Shannon Campbell, Vice President and General Manager of Oncology, Bayer HealthCare said:

Conversations between men with prostate cancer and their doctors are not always easy – but they are vitally important, especially where symptoms are concerned, physicians can serve a major role in assessing how men are feeling, if they are willing to voice their symptoms and concerns. The survey shows that while 97 percent of patients say they feel comfortable discussing symptoms with their doctors, only 46 percent actually do at every visit. More dialogue is needed

Jan Manarite from Patient Advocates for Advanced Cancer Treatments (PAACT), another member organization of the IPCC, knows firsthand how difficult it can sometimes be for men to speak up. When her husband, Dominic, was diagnosed with advanced prostate cancer in the year 2000, the cancer had already spread to his hips, ribs, spine and skull.

Manarite said:

Dominic was your typical man: he didn't talk about his pain and frequently attributed his symptoms to something else, like his work as a charter captain, when he finally saw the doctor, we learned he had been living with advanced prostate cancer with bone metastases for many years

Family members and caregivers can provide a different perspective than their loved ones on the impact of symptoms. The Prostate Cancer Symptoms Survey shed light on this difference, with nearly three-quarters (74 percent) of caregivers* surveyed reporting that pain often limits their loved one's activities, whereas fewer than half (44 percent) of the patients surveyed see an impact of pain on their activities.1

Manarite continued:

Looking back – if he had understood that talking to a doctor about his pain would have empowered him as a patient, he may have had a different perspective. Dominic is gone now after a 13-year fight against metastatic prostate cancer. Our hope is that through Men Who Speak Up, we can reach more men like Dominic and encourage them to speak up and help them take action against advanced prostate cancer

About the Global Prostate Cancer Symptoms Survey

The U.S. arm of the Global Prostate Cancer Symptoms Survey was conducted by Harris Poll, an independent research organization that was compensated for its services, between February 12 and April 13, 2015. A total of 505 advanced prostate cancer patients (n=410) and adults who care for someone with advanced prostate cancer (caregivers) (n=95) participated in the survey in the U.S. The global survey is ongoing worldwide. A global post-weight will be applied to ensure all countries receive an equal weight in the global and regional data; however, when looking at individual country differences, the post-weight will not be applied. Total sample data will not be weighted and therefore representative only of the individuals interviewed.

About the International Prostate Cancer Coalition (IPCC)

Led by U.S. advocacy organization CancerCare, the IPCC is comprised of eight groups including Patient Advocates for Advanced Cancer Treatments (PAACT), Prostate Cancer Research Institute (PCRI), Prostate Health Education Network (PHEN), Us TOO International, ZERO – The End of Prostate Cancer, Europa Uomo and GEPAC. The group's mission is to raise awareness of the symptoms of advancing prostate cancer so that men and their loved ones know how and when to speak up and take action.

About Men Who Speak Up

From the time they are young, men are guided to grit their teeth and play through any discomfort they experience. Yet for men with advancing prostate cancer, discomfort can be a sign that something needs to be done. Men Who Speak Up is a nationwide movement that brings the symptoms of advancing prostate cancer to life for the community, so that men know when to speak up and take action against their disease. The program raises the collective voices of prostate cancer – the doctors who treat it, the patients and caregivers who live it, and the advocacy groups who support them – and delivers informational tools and resources to those who need them most. For more information, visit www.MenWhoSpeakUp.com.

About Advanced Prostate Cancer

Prostate cancer is the most common cancer among men in the U.S. and the second leading cause of cancer death in men, as approximately one in 38 will die from the disease.3 It is estimated that approximately 220,800 men will be diagnosed with, and 27,540 men will die from, prostate cancer in the U.S. in 2015.3 The stage of prostate cancer is one of the most important factors in determining treatment options and the outlook for recovery.3  If prostate cancer spreads, or metastasizes, beyond the prostate gland, it often first grows into nearby tissues or lymph nodes before spreading to the bones.3  Approximately nine in 10 (90 percent) of patients with advanced prostate cancer develop bone metastases, impacting survival and quality of life.4,5,6,7  Therefore, diagnosing and treating bone-related symptoms at the earliest onset is critical for patients.

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