Support Groups: How Can They Help Men With Prostate Cancer?

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Topics include: Living Well and Patient Stories

Living with prostate cancer and its side effects can be personal and feel isolating.  Is there a benefit to participating in a support group?  Andrew Schorr leads a discussion on the power of support groups with Us TOO International CEO, Chuck Strand, and prostate cancer survivor and patient advocate, Jim Schraidt.  Listen as they explore depression, coping methods and empowerment.

This virtual town meeting was sponsored by the Patient Empowerment Network through educational grants from Astellas, Medivation, Inc. and Sanofi. 

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Andrew Schorr:

Hello and welcome to Patient Power. I'm Andrew Schorr. So when you're diagnosed with prostate cancer, it is a devastating diagnosis.  You don't know what's next for you.  Perhaps they can get it with surgery or radiation, or maybe it will be advanced. But it's terrifying nonetheless for you and perhaps your family as well, maybe certainly your family as well.  

Support is important. Well, I'm with two gentlemen here who are devoted to that and helping people wherever they may feel supported and connected.  So with me is Chuck Strand.  Chuck is the CEO of Us TOO, which is a wonderful organization.  You have support groups around the U.S. certainly, more than 300, right, Chuck?  

Chuck Strand:

We do have support groups around the country, also some abroad.

Andrew Schorr:

Terrific.  And then here's someone who is in one and now leads one—and, of course, living with prostate cancer for a number of years, an attorney from Chicago, Jim Schraidt. Thank you so much for being with us. Jim, tell us, you chose to join a support group.  How come? Many men don't want to talk about it.

Jim Schraidt:

Well, I had a successful surgery, but I had a lot of issues with the side effects. And it kind of spiraled for me into a clinical depression, and I found my way to the support group. It actually took me a lot longer than it should have, probably six, eight months, and I found people there, men who had gone through the same thing. And we exchanged methods of coping, and I got a lot of support.  

I was very angry at the time, and there was a place for that anger to go as opposed to, you know, being angry at home with my spouse and, you know, I had two kids at home at the time.

Andrew Schorr:

So how much of a difference has it made for you over the years? 

Jim Schraidt:

It's made a huge difference and continues to do so. 

Andrew Schorr:

Now, Chuck, what's the mission of Us TOO? Is it exactly what we heard here?

Chuck Strand:

It really is. 

Andrew Schorr:

Help diffuse anger, lack of knowledge. Maybe you can describe it. 

Chuck Strand:

We're a nonprofit that's focused on providing educational resources and support services to the prostate cancer community. So the support groups really are an important piece of the services that we provide, and it's so important to have that peer?to?peer support, because unlike some diseases, like you know, there's not a well?worn path from diagnosis to treatment and side effect management. So we try to provide the information on a variety of platforms, realizing that while support groups are so valuable for many people with that peer?to?peer face?to?face interaction, some folks aren't able or in a vicinity for support groups, so we have online support services also. 

Andrew Schorr:

And you're our partner in the educational programs we do with Patient Power…

Chuck Strand:

Yes.

Andrew Schorr:

…and the Patient Empowerment Network and all to help people digitally… 

Chuck Strand:

Yes.

Andrew Schorr:

…as well, whether they choose to go to a support group or not.  But, Jim, you not only are part of a support group, you lead one.  What is the transformation, if you will, that you see that happens with men when they start talking? 

Jim Schraidt:

Well, part of it is just empowerment. You alluded a moment ago to the difficulties that occur when you're diagnosed with prostate cancer. I would add to that that the treatment options are bewildering. And so if you come to a support group when you're newly diagnosed, you can learn about the effects of those treatments, you can learn about new things that are out there and go back to your doctor as an empowered patient.  

And I think the other thing is that when you do make a treatment decision if you've talked with men who have had that treatment, been through it, lived with the side effects, you're much better prepared for what comes after treatment. And you don't have, you know, the kind of disappointment and frustration that I did, or hopefully you don't.

Andrew Schorr:

And, of course, while there have been a lot of improvements in the treatment of prostate cancer, even when it advances you used the words side effects. And that sort of goes with these powerful but sometimes aggressive treatments, so living—how to go forward with it and manage those is important. And speaking up. I'm sure you encourage people to speak up with their doctors, with their nurses. 

Jim Schraidt:

Well, or even speak up in support group. I mean, these issues, these side effects are some of the most personal and isolating that there are. It's not unique to prostate cancer. It's true of many cancers. But nonetheless to have a place to go where you can talk openly about these things is, I found, very valuable. And I find that it helps me, it brings me healing to try to help others. 

Andrew Schorr:

Chuck, what are some of the testimonials you get?  I'm sure you've had men call initially, they're diagnosed, they're terrified, and yet you know some of these men over many years.  What's the change you see in them as they make this connection? 

Chuck Strand:

I think that understandably when someone is diagnosed with cancer at all it's just overwhelming. And to couple that with having to learn so much in order to make smart choices with prostate cancer it goes from—a lot of time, even the calls we get on our 800 number line at the office, we'll field the calls. And it will go from someone that's very, very understandably upset and fearful to at the end of the conversation have a better handle on where they can go for the next step.

Because in addition to our team that's in the office to answer the phones, we have another level of about 90 volunteers that are all categorized by the treatment they had and the side effects they're managing, so we can connect the caller to someone that can really relate to them for almost like an on?the?phone type of support interaction. So it really—it's gratifying to be playing a small part of a greater good and just helping people get their information they need. 

Andrew Schorr:

I'm sure it is.  Well, thank you for your leadership now with the organization and what Us TOO does.  And, Jim, I guess the message for men is while they may get a diagnosis and feel angry and out of control and maybe even a victim of cancer, this is part of the step of taking back control, isn't it? 

Jim Schraidt:

Andrew Schorr:

Well, you can be in control. Us TOO is there to help you. We're delighted to be in partnership with them to help you connect with the right information and the right people, and they're in many, many communities.  

Chuck Strand:

Yes.

Andrew Schorr:

Online and in?person you are not alone. And also information to help you with your family relationships, of course.  Thank you so much, Chuck and Jim…

Jim Schraidt:

Thank you.  

Andrew Schorr:

…for what you do.  I'm Andrew Schorr.  Remember, knowledge can be the best medicine of all. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on June 10, 2016
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