Prostate cancer is the second most common cancer in men worldwide.1 Approximately 165,000 men in the U.S.2 and 1.3 million men worldwide3 were diagnosed with prostate cancer in 2018. Currently, there are nearly 3 million men in the U.S. living with a prostate cancer diagnosis, and that number is expected to reach nearly 4 million by 2024 as men in the baby boomer generation age.4
That’s why it is important to provide prostate cancer education and support, according to Chuck Strand, CEO at prostate cancer non-profit Us TOO International, who spoke to Change Together for World Cancer Day.
Reflecting on the 2018 prostate cancer statistics from the World Cancer Research Fund, he says:
“Prostate cancer is one of the most difficult cancers to manage, because unlike other diseases where there may be a well-worn path from the diagnosis to one or two treatments, a man who has been diagnosed with, or is managing, prostate cancer requires educational resources and support services to make informed treatment decisions. There may not be a particular treatment that jumps out as being the obvious choice. Instead, it can be several options. After an initial diagnosis, options could include active surveillance, surgery or radiation. When considering alternatives, it’s so important to understand potential treatment side effects and impact on quality of life.”
Providing education and events
As a result, the charity provides educational resources and support services to the prostate cancer community at no charge through a network of more than 200 support groups across the country and abroad, and through various services and programs that include educational events.
“If you are living with prostate cancer, there are so many things you have to manage and to juggle.”
“We want to do whatever we can to help to provide connections to resources and materials, and to others in the prostate cancer community who can speak from their personal experience with the disease,” says Chuck.
A survey to Us TOO prostate cancer support group leaders identified topics requiring additional educational content. These included the impact of prostate cancer on sexual health and intimacy, erectile dysfunction, urinary incontinence and the psychosocial impact of managing the disease, which can include anxiety and depression.
“We have just wrapped up a series of three Prostate Cancer Pathways events that addressed these issues,” says Chuck, adding that the sessions had been filmed and were now available on the Us TOO website.
“These topics are all interconnected. Sexual health and intimacy can be affected by erectile dysfunction and urinary incontinence. If not addressed, the situation has the potential to devastate a relationship and potentially lead to anxiety and depression,” notes Chuck.
The elephant in the room
As Chuck highlights: “Sexual health is the elephant in the room, and many people may not be comfortable talking about it. We’re fortunate to provide professional presentations from medical experts who do an excellent job of making these intimate topics approachable, understandable and manageable.”
“Sexual health and intimacy is a topic that is consistently a top concern for patients and their partners,” adds Chuck. He points out that the charity also runs a monthly conference call for the female partners of men with prostate cancer to provide a confidential forum for women to talk with other women who understand exactly what they are going though.
Consequently, a new section in the monthly Us TOO Hot SHEET newsletter, called Between the Sheets, gives readers the opportunity to submit sexual health questions for an answer from a medical professional.
“We have two sexual health experts who have volunteered to respond to these questions. We are really pleased that we are able to address this topic and provide accurate information to the people who need it,” says Chuck.
Meeting people’s needs
The feedback on this year’s activities has been positive so far, but in order to inform its 2019 program of events, Chuck explains that the charity is distributing another survey to support group leaders to identify underserved needs and challenges along with best practices.
“We are always looking for ways we can more effectively address the needs of the prostate cancer community. But we can’t do that without the connection to men and their loved ones who are managing life with prostate cancer,” Chuck adds.
- World Cancer Research Fund/American Institute for Cancer Research (2018). Continuous Update Project Expert Report 2018. Diet, nutrition, physical activity and prostate cancer. Available from: https://www.wcrf.org/sites/default/files/Prostate-cancer-report.pdf (accessed February 2019).
- National Cancer Institute (2019). Cancer Stat Facts: Prostate Cancer. Available from: https://seer.cancer.gov/statfacts/html/prost.html (accessed February 2019).
- World Cancer Research Fund/American Institute for Cancer Research (2019). Prostate cancer statistics. Available from: https://www.wcrf.org/dietandcancer/cancer-trends/prostate-cancer-statistics (accessed February 2019).
- Us TOO International (2019). Facts & Stats. Available from: https://www.ustoo.org/Facts-And-Stats (accessed February 2019)