POSTED: February 22, 2020

Starting and Leading a Support Group

Ms. Terri Likowski is the Program Director of Support Group Services for Us TOO International Prostate Cancer Education and Support Network, a nonprofit dedicated to providing comprehensive educational materials and support group services to men with prostate cancer.
Prostatepedia spoke with her about starting and running a prostate cancer support group.

What is it about prostate cancer advocacy that has been meaningful to you?

Ms. Terri Likowski: The people I have met through the Us TOO organization are just so inspiring. To get a cancer diagnosis is frightening, and it can be especially difficult for men with prostate cancer. With so many treatment options available, it can be an overwhelming experience. There is also a strong possibility that these men could be facing some major quality of life  issues after treatment, such as erectile dysfunction (ED) and incontinence. I meet a lot of men and families who handle their situations with dignity and grace. They are not ashamed or embarrassed to talk about some of their fears and concerns about what the future could hold. They open up to me about possible side effects they could be facing, or express concern on whether or not their treatments would work. I started  to build strong relationships by being there to listen and learn from their personal stories and experiences.  They are my mentors and I am close to these men and their family members. I admire them so much for the way they turned a cancer diagnosis into something meaningful in their lives. It is just something really special, and I feel lucky to be a part of it. I have to thank all of our support group leaders; past, present and future. We could not provide our support services without you.  

What is your role now?

Ms. Likowski: I started out in 2005 as the Executive Assistant to the CEO.  I then quickly became a Program Manager for the Minority and Underserved Populations Program.  We had a five-year grant through the Centers for Disease Control (CDC), so I was engaged immediately  in the nonprofit cancer world. I did  a lot of traveling, attended many conferences and met amazing, brilliant people—doctors and advocates. Because the African American community is at increased risk for prostate cancer, I especially loved getting out into these communities
and educating men and their families about the disease. I learned that you
 had to build up a lot of trust before Us TOO could really start to make a difference in these underserved areas. We were able to provide some excellent educational materials and  created a “train the trainer” program so that we could empower men and women, and provide them with the  tools to be able to go out and educate others in their local areas and spread awareness about prostate cancer. After a few years in that role, I was respected and greeted with open arms because I think they knew that I really did care. I made a lot of connections that helped to strengthen our network, once that trust was established. I was promoted to Program Director in 2016 and serve as the point person to establish, maintain and expand the Us TOO network of volunteerled prostate cancer support groups throughout the U.S. and abroad. 

How many support groups does Us TOO have? Where are they located?

Ms. Likowski: Right now we have 210 Us TOO support groups throughout the country and in most  states. We have four support groups in the Bahamas who are doing an amazing job educating men and their families and spreading
awareness about prostate cancer. We also have groups in Spain, Australia, and Canada.

How large are these groups?

Ms. Likowski: The groups can be anywhere from 5 people to 85 people. I would say the average support group is between 20 and 25 people, but attendance tends to ebb and flow.  Newly diagnosed men sometimes come in and might only attend a few  meetings. Then they’ll make their  treatment decision and they won’t  come back. I’ve had a lot of discussion with my support group leaders about  this. Sometimes the leaders feel that  if a man comes to the group and then doesn’t come back that they’ve  failed him somehow. But I say that  it’s exactly the opposite. They haven’t failed the men. The attendees found what they needed and now want to move on with life and put their prostate cancer behind them. Typically, a handful of people are the  stronghold of the group. These are  the ones who always come back, and some have been going to the  group for years. They find it rewarding to be able to mentor newly diagnosed men, to help them through those beginning stages, and to help them to make informed decisions on what treatment options are best for them. 

Do you have groups for caregivers?

Ms. Likowski: Our groups are open to patients and caregivers. However,
two years ago, we started a platform called “A Forum for Her”. This is a call-in support group specifically for women with a partner who has prostate cancer. That group is going extremely well. We have two to three calls per month, every month, which are led by volunteers. We try to keep those calls to six or seven ladies on each call. This creates an intimate setting, where they are more open to share
things with each other. We have  had very positive feedback about these calls from a large number of participants, and our group list continues to grow. I’m also thrilled to announce that we just launched  a forum specifically for gay men and
their partners. It’s already branching out into the LGBT community.  “A Prostate Cancer Forum for Gay  Men and Their Partners” is a new, ongoing conference call series, which provides gay men and their partners with important peer-to-peer
support. Usually, both the man living with prostate cancer and his husband  or partner are deeply impacted,  and each is subject to his own physical and emotional concerns. It can be helpful to address these concerns by speaking with others  in a similar situation.

This is a phone-call based group?

Ms. Likowski: Yes. This group and “A Forum for Her” are phonecall-based.

I wonder if that’s easier for people to join than an in-person group. It must feel a bit more anonymous.

Ms. Likowski: It is. Most participants just share their first name. We don’t
record the calls and we want to be  very respectful of everyone’s privacy.
I would always recommend, whenever possible, face-to-face groups because I think that you can really bond and open up more in person. But if there is no support group in the area, or if there are issues with transportation, I think  a call-in group is a really great option. Some people just do not like to meet  in person and feel more comfortable on a phone conversation. The forums are bringing people from the cities together, and often they will meet for coffee or dinner once that relationship is formed. It’s really fulfilling to see these relationships grow. They are supporting each other and making a difference for each other in very meaningful ways! 

Do you help these support groups develop programming? Do you offer guidance as to how to run a support group?

Ms. Likowski: We help facilitate, provide educational materials,  and offer guidance. We don’t control the group, but we help them and support them the best we can.  In addition to our monthly newsletter, the Hot SHEET, our website is a great educational resource. We provide free educational materials for leaders to hand out at meetings. We have  a support group leader resource page on our website that is for support group leaders only; they can share some information offered there with anyone engaged with their group.  We’ve worked really hard to provide support for leaders in the beginning stages. For those starting a new group, we offer suggestions on possible venues to hold their groups and how to get the word out into their  communities about the new groups. We provide some basic templates for meeting flyers, business cards, and we now have a new brochure specifically for support groups that  they can hand out in their communities.
We provide input on topics and videos from our recent Prostate Cancer Pathways educational event series, which were recorded last year. In these videos, we offer links to short segments on very specific topics, including: all stages of disease, from newly diagnosed to advanced  stage; sex and intimacy; psychosocial issues such as anxiety and depression; and much more. These videos offer an excellent resource that support group leaders can show at their meetings if they don’t have  a speaker scheduled. 

I’m sure finding a speaker can be difficult for people in more remote areas.

Ms. Likowski: That can be a real struggle, so having these up-to-date educational resources can really be helpful in those situations. Another thing that we’ve been doing over the last couple of years that has been extremely successful is our monthly support group leader phone calls. I generally have anywhere between 18 and 35 support group leaders from all over the country on a call. Those calls have really helped build camaraderie. The leaders learn from each other about different cultures throughout the country. The beauty of the calls is that new leaders connect with peers and mentors in the group, some of whom have been leading groups for 20 to  25 years. They share their best practices with the new leaders, including how to grow the group  or how to get the word out to newly diagnosed patients. We’re also working with an advocate from  a pharmaceutical company who  is going to teach a series of five webinars, one per month, on things such as listening skills, presentation skills, and questioning skills in order to enable dialogues at meetings and help leaders understand behavioral styles. We’re really excited about that.

It sounds like you provide quite a lot of guidance and support as men start these groups. If a man reading this is in a community that doesn’t have a support group and thinks he might want to start one, what should he do?

Ms. Likowski: Contact me at terril@ustoo.org or 336-842-3578. I like to first have an initial talk. We like  to build communication with leaders right from the beginning and that initial conversation is great first step.  If you’re even just thinking about starting a group, start talking about it. Talk about it out loud. You’d be surprised at the number of people you might meet who are affected by prostate cancer. It might be your neighbor or somebody that attends your church group. Find others who can help you manage the support group in the beginning stages; let others take some ownership of that group. It will help you to build a much better group in the long run.
When you need to find a location  to meet, talk to your urologist, your oncologist,  or your own personal doctor. See if they’re interested in helping to promote the group. Maybe your hospital would be willing to host a meeting. Other options  are local cancer centers, community centers, libraries, or VFW halls. Those are all really great places to host monthly meetings where there won’t be any associated cost.

Do you give the men advice about how to get the word out about these groups?

Ms. Likowski: We’re putting the finishing touches on a brochure that specifically talks about our support groups. Each support group can put their own information on the front  of the brochure. That will make a really great handout. These can be left at urologist offices, community centers, and hospitals. We recommend  to always reach out to the partners of the men affected by prostate cancer. Generally, women tend to talk to each and open up more than men,  so it’s a good idea to get the women engaged right away. Sometimes they might help take the reins and get the group moving forward. We have several groups now that are led by couples.

I’m sure women will feel more comfortable joining the group if there’s a female leader involved.

Ms. Likowski: Yes. There are a lot of situations when the men might be in denial or they just don’t want to talk about their prostate cancer. Sometimes their partner will attend the support group on their own. Then eventually, they can hopefully convince him to come.

Often when people hear that they have cancer, they get really scared. And fear can paralyze you, if you let it.

Ms. Likowski: Absolutely. You hear that over and over again. Especially when they’re newly diagnosed. They hear those words “you have cancer” and that’s all they hear. After that, it’s just a big blank.  We suggest bringing somebody else
 with you when you go to talk to your doctor. That person can record the conversation or take notes for you.

Another pair of ears is always useful.

Ms. Likowski: Definitely!

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Do you have any advice for men  with prostate cancer?

Ms. Likowski: I think the most important thing is to educate yourself. Take an active role in making informed decisions regarding your treatment choices. Do your research. Knowledge is power and the more you know about your situation and your specific options, the better equipped you’re going to be  to make a decision. You’ve got  to ask about possible side effects. Quality of life issues sideswipe many men after treatment because they didn’t really talk about those side effects with their doctors before treatment. Make sure you’re doing your research and talking  to other people. It’s really helpful  to talk to somebody else who’s been in your shoes. Get involved  in a local support group. If you don’t want to go to a support group, we can connect you to a phone group. We can connect you with virtual support groups or one-on-one conversations with someone else. You don’t have to feel like you’re  on your own. Even though every man’s prostate cancer is different, talking to other people will really help. Also, make sure you have  a strong relationship with your doctor. Having a strong relationship with your doctor who helps you talk through treatment decisions can be really empowering. It helps you feel like you’ve made the right choice and then you can move forward. There is so much confusion with prostate cancer, because there  are so many options out there.  You really do have to do your homework and educate yourself. 

There is nothing like talking to somebody else who’s going through something similar to what you’re going through. It makes you feel less alone.

Ms. Likowski: It does. One of my favorite leaders, who passed away from his prostate cancer four years ago, used to share with me that there’s nothing better than when somebody walks into your group afraid and then, two hours later, leaves feeling hopeful. You have had a good day when you can really change somebody’s outlook like that, and you’ve made a difference in their life in a positive way.  That’s really a powerful feeling.  It makes you feel good about yourself and that you have found purpose in your own life. There is not a day that goes by in my role with Us TOO that I don’t hear those words in my head, and it makes  me smile. 

For prostate cancer support...
Visit www.ustoo.org  or email ustoo@ustoo.org,  or call 800-808-7866.

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