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Prostate and Urological Health

What It’s Like to Be Part of a Prostate Cancer Support Group

Stigma continues to surround men’s health in general, and prostate health in particular. Having a support network, however, can help to curb these threats. Terri Likowski and Ken Wilmarth from Us TOO’s support group open up about the ways an organization like theirs can give members a bedrock of information — and hope.

What role does a support group play in helping those diagnosed with prostate cancer? 

Support groups offer a unique camaraderie where experienced prostate cancer survivors, the newly diagnosed and caregivers gather to share information, concerns, tips, stories and personal perspectives on prostate cancer testing, treatment options, and management of side effects related to treatment.

Being diagnosed with prostate cancer is, for most, quite scary. Support groups empower men, their families and their spouses or partners with knowledge that provides a sense of hope. We hear quite often from men who enter the meetings filled with a range of emotions from depression to fear, and come out after the meetings with a sense of true empowerment and hope. Very importantly, regular attendees tend to form a strong bond with each other.  

Who attends support group meetings?

They can be made up of men and their loved ones who have been through prostate cancer or are currently going through it. Ideally, we’d like guys to come to a meeting immediately after diagnosis but before having treatment, to get an overview of all of their options. 

Some services are offered at no charge, and most of our support groups are led by compassionate, dedicated volunteers across the country who do it for no other reason than to help other men and their loved ones in their local communities. There is great value in speaking directly with those that have had, or are currently having, the same experiences as you. And when this happens at the local level, there is the opportunity to explore specific resources and options that can be beneficial. As baby boomers age, and more men are diagnosed with prostate cancer, it will become increasingly important to have such an established support system in place, providing the knowledge to make educated decisions.     

Is there anything that wives, significant others, partners, or loved ones should know?

Prostate cancer can be a couple’s disease due to the impact it can have on the relationship. Partners should recognize the importance of talking about the disease and its effects, but sometimes this can be difficult. It is extremely helpful for caregivers to talk with others who can understand what they are experiencing.

Caregivers play an important role, particularly when it comes how to address issues such as emotional and intimacy concerns after treatment. Some of our support group meetings focus specifically on the challenges confronting spouses or partners. Many men, unfortunately, need encouragement from a wife or significant other to go to the doctor. It is important to get regular check-ups and, if prostate cancer is detected, the family and loved ones can offer support in the decision-making process on treatment options.      

What recommendations do you have for men about testing for prostate cancer?

Prostate cancer generally has no symptoms until it is advanced. Therefore, to help detect it early, it is important that men undergo regular PSA (Prostate-Specific Antigen) testing and DRE (digital rectal exams). These should be discussed with the doctor, but should generally begin as a man reaches age 45. In instances where men are at a higher risk, such as those with a family history of prostate cancer, veterans exposed to Agent Orange or other chemicals, or African-American men, testing should begin earlier.   

Ken, can you tell us what you have been experiencing as a support group leader? 

Ken Willmarth: We in local chapters can connect with men who are newly diagnosed with prostate cancer, help them work through their emotional confusion, and introduce them to the new world they are entering, because we were once in their shoes, and still travel this same road. The knowledge that we offer — on the specifics of our disease, options for how to treat it, how to build our own individual and chapter support teams, and so much more — has built trust in our parent organization, and makes what we share credible and effective.

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