When we at PCF and Us TOO first started collaborating on this article, it was business-as-usual: once a man, his partner, or loved one was ready to join a support group, they could call around or look online to find a nearby group, confirm the details, and meet a roomful of welcoming survivors!
Now, it’s a little more difficult. We’re all encouraged to practice social distancing to protect ourselves and others from the coronavirus. This may be particularly important for prostate cancer patients and survivors, who may be older and have other medical conditions in addition to cancer.
The thing is – now, more than ever, men and their families need support. Whatever stage you are in your prostate cancer journey, or if someone you love is battling the disease, you are not alone! Support groups are everywhere, and Us TOO International is leading this effort.
Us TOO International has been at the forefront of providing hope, support and advocacy for those affected by prostate cancer. PCF spoke with two determined leaders of Us TOO, Terri Likowski, Program Director of Support Group Services, and Cliff Whall, survivor and support group leader, about what to expect when joining a support group.
Q: Who should join a support group?
TL: Men (and their loved ones) at different stages in their prostate cancer journey can benefit from a support group. Newly diagnosed men benefit from guidance, information, and emotional support as they make decisions about treatment. Men who have already been treated for prostate cancer can discuss and learn more about quality-of-life issues they may be facing after treatment such as erectile dysfunction (ED), incontinence, anxiety & depression, and diet & exercise.
CW: Even after what may appear to be a successful treatment, it is important for men to remain active support group participants. If they do have a recurrence, they will already have a current knowledge base of the latest treatments for their particular situation and of the experts for whatever treatment they choose. It is also important to give back by helping to provide new members with the information they need to make an informed treatment decision.
Click here to find an Us TOO support group (currently, meeting virtually) in your area.
Who attends the meetings?
TL: Primarily men who have been diagnosed with, or who have had a recurrence of, prostate cancer. Some partners and family members attend, and many groups have a facilitator (social worker or nurse navigator).
What happens during the meeting?
CW: Under normal circumstances, support groups meet in the evening once a month. Each participant introduces themselves and what they’re looking to get out of it. New members may be asked to describe their situation in detail so that the group understands their needs and can offer specific information and suggestions. There is no requirement to share, however. Those who are uncomfortable speaking or sharing can also benefit from hearing from the others.
There may be announcements about developments in the diagnosis or treatment of prostate cancer, and finally, a presentation on a specific topic followed by Q&A. This may be live or online. Meetings conclude with an open discussion.
Note: Meetings continue virtually!
TL: Several of the groups have tried out meeting virtually over the last weeks. This is allowing them a way to connect from a safe space, and that seems to be providing some comfort.
What if I’m on the fence about joining?
CW: You are not alone. Some men attend before they are quite ready to share their story. That’s totally OK.
TL: No one should force you to talk or share if you are not ready….Just let them know you are there to listen and learn from others.
CW: What do you have to lose? Come once, and if you don’t like it, don’t come again….But you may, like so many other men in your situation, find that a support group fills an empty void.
Whall and Likowski both emphasize how hearing from people who have “been there – done that,” and opening up with those involved in the same fight has been the best benefit. Likowski observed that men often come out feeling hopeful and empowered, with a better understanding of how treatments could change their quality of life.
What if there is no Us TOO Support Group in my location?
TL: No problem – in-person gatherings are limited for most of us right now. Us TOO holds regular conference calls for men affected and their partners. We also have A Forum for Her and a Gay Men’s Forum, which are monthly calls. And we partner with AnCan who holds regular virtual meetings. Visit https://www.ustoo.org/Join-a-Phone-Conversation for information about these opportunities. You can also join our online prostate cancer support community on Inspire which has 24,000 members at www.inspire.com.
CW: A diagnosis of cancer shatters your world. Support groups understand that, because every one of the members have gone through it. We all become prostate cancer warriors, and warriors support each other.
To learn more about Us TOO, visit their webpage at www.ustoo.org.
PCF.org also has resources at https://www.pcf.org/patient-resources/patient-navigation/support-groups/ for support groups on Facebook for different interests: newly diagnosed, African American, veterans, caregivers, gay/bisexual/transgender, under age 50, those with metastatic disease, and survivors. You can join these in addition to a phone-based support group.