The Prostate Cancer Patient Voice: 2022


929 PATIENTS participated in a patient needs survey 772 PATIENTS participated in an erectile dysfunction (ED) survey

1,551 VETERANS participated in a Veterans and prostate cancer survey 80 SUPPORT GROUP LEADERS participated in a support group survey ZERO also received your feedback after the 2022 SUMMIT, all educational WEBINARS, and the 2022 in-person SUPPORT GROUP LEADER TRAINING HIGHLIGHTS BY TOPIC




53% of patients don’t understand poly-ADP ribose polymerase (PARP) inhibitors at all. 45% of patients don’t understand radioligand therapy (RLT) at all.

60% of patients surveyed have not had genetic testing. 65% of patients surveyed have not had genomic/biomarker testing. When asked what is most important in the health care services they receive, 53% of patients said the experience of their care team was the most important, followed by 26% of patients putting quality of life issues as the most important. 51% of patients reported they would have felt more prepared for their treatment plan if they would have known about possible side effects. 72% of patients made their treatment decisions with their doctor. Over half of Veterans diagnosed with prostate cancer reported some amount of depression, insomnia, or anxiety.

80% of patients with ED reported that it is difficult, somewhat difficult, or extremely difficult to live with. 81% of patients with ED have tried medication, devices, injections, suppositories, or implants. About half of patients with ED want to learn how to manage their symptoms, either through webinars, support groups, a health professional, or by talking with other patients.

94% of patients prefer to hear prostate cancer information verbally from their doctors.

Over half of patients wish there was more information on prostate cancer treatments and side effect management.

© 2023 ZERO ® Prostate Cancer 02/23


“ I wish I understood more about ED and the ability to achieve and maintain an erection. Sex is not everything but I sometimes feel like I am not the full man I used to be. But I am alive and can enjoy life and my family…so that makes up for it. I think an antidepressant should have been prescribed after surgery to remove my prostate, if nothing else just to cope better.” “ I believe there should be more openness on incontinence. Obviously, no erections… nerve sparing wasn’t possible. From conversations I’ve had with other PCa guys, I almost always get an admission of ‘me too.’” “ The mental side of having cancer is as important as the treatment side. Seek help for the former and become as knowledgeable as possible about the disease and treatment options.” “ Get involved with a support group, stay positive, have something to get up for everyday. Talk with your doctors, ask questions about your health, and take it one day at a time. ”

“I did a lot of research and had many 2nd and 3rd opinions and went to two support groups before making my treatment decision.” “All doctors with whom I engaged minimized and downplayed side effects. I wish they had been more forthcoming and transparent as the side effects are impacting my life post-prostatectomy. ” “ Find a doctor you trust. Listen and learn. Do research from credible sources. Get a second opinion. Make your decision and get it done. Go to all appointments. Be your own best advocate. ” “ Explore all your options and find a support group or friends who can help you through the difficulties that are likely to come with the prostate cancer diagnosis.” “ Don’t be hesitant to seek the services of a sex therapist. Your doctors will not think of suggesting it.”

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