Supporting prostate cancer support groups

Sep 28, 2018
Supporting prostate cancer support groups

Support groups can be an important part of managing many diseases – but they can be particularly important in effectively managing prostate cancer.

Speaking to Change Together for Prostate Cancer Awareness Month, Chuck Strand, CEO of Us TOO International, highlighted the complicated treatment landscape and potential psychosocial impact of the cancer on quality of life.

“With other cancers, there may be a well-worn path between a diagnosis and one or two best treatments. But with prostate cancer, the patient needs to become really educated on all the options, so he can make an informed choice on how to best move forward,” he said.

“There is a lot of value in having the opportunity to talk to people who have successfully navigated treatment options or managed side effects. An initial diagnosis or recurrence can be devastating; so being able to talk to others who have been effectively managing their disease for years provides real hope.”

A network of support

Us TOO International has a network of more than 200 prostate cancer support groups across the country and abroad. While the nonprofit doesn’t manage the groups, it provides the educational resources and framework to help volunteer group leaders create and sustain monthly support group meetings. Terri Likowski serves as the Director of Support Services and is the point person for the Us TOO support group network.

Terri leads a monthly conference call to provide support for the support group leaders. It’s an opportunity to discuss challenges, share best practices, and build camaraderie among leaders across the country. The minutes and learning points are posted as resources on an Us TOO web page accessible only to support group leaders.

“Recognizing the important role of these leaders in helping to educate and support their local communities, we do what we can to help them be as effective as possible,” explained Chuck.

Many leaders attend health fairs and community gatherings to generate awareness. They also talk to physicians about getting educational materials and support group meeting information in their offices. It’s a team effort.”

Ideally, men would visit a support group before they make any choices on treatment, but that’s not typical.

“Usually people who attend a support group meeting have already been treated. Others in the group can provide perspective and advice to help them with the ongoing management of the disease,” said Chuck.

“Even if they have decided on active surveillance rather than a medical treatment, it’s important to monitor PSA for potential disease progression, and to be fully informed on the various treatment options and the probability of related side effects.”

Of course, not everyone is able to – or wants to – attend a face-to-face meeting, so Us TOO International hosts an online education and support community called Inspire.

Other support services include women-only conference calls for the wives and female partners of men living with prostate cancer; and development of a similar service for husbands and male partners.

Chuck said: “People are dealing with a lot. These calls are private and confidential and give partners a chance to talk openly about psychosocial issues. It might be that the patient isn’t taking ownership of the condition and the partner has to lead the charge. Other times, the couple may be dealing with the fallout from a loss of intimacy. Erectile dysfunction and incontinence are common side effects of treatment. Being able to talk to someone who can relate to a situation from personal experience can be a huge source of support and information.”

Moving the needle this Prostate Cancer Awareness Month

Asked about Prostate Cancer Awareness Month, which takes place each September, Chuck said it was a great opportunity to share the group’s work.

The 14th Annual SEA – support, educate, advocate – Blue Chicago Prostate Cancer Walk and Run took place on September 9. Alongside the main event, there was a Talk to the Experts session and even free refreshments and entertainment.

On September 29, a Prostate Cancer Pathways for Patients and Caregivers event was held in Englewood, New Jersey. The session, which included physicians offering advice on sexual health and intimacy, was streamed live so everyone could take part.

Chuck explained that the core value provided by Us TOO International can be summed up by the organization’s new mission statement, which is:

“To provide educational resources and support services to those affected by prostate cancer to help them to learn to fight this disease. The power of Us TOO is helping men and those who love them by transforming resignation into determination and fear into hope.”

Chuck will take part in a special Change Together Prostate Cancer Awareness Month webinar on October 11. For more information, please click here.

Supporting prostate cancer support groups

Author

As CEO of Us TOO International, Chuck leads initiatives to provide educational resources, support services and personal connections to the prostate cancer community at no charge. In response to unmet or underserved needs of patients, caregivers, and support group leaders, recent content developed includes Us TOO educational events, webcasts, topic-specific web pages, and expanded support services. He leverages his marketing agency experience in rare disease/disorder therapies and pro bono nonprofit work to repurpose FDA-approved drugs as off-label treatments. He also brings experience in consumer relationship marketing through agency account management with Edelman Worldwide and Frankel/Publicis for clients including Apple, Kraft Foods, General Motors and Bayer Healthcare. Chuck began his work with Us TOO International as a volunteer in 2010.

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