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How Does Us TOO International Support Prostate Cancer Patients and Their Loved Ones?

How Does Us TOO International Support Prostate Cancer Patients and Their Loved Ones? from Patient Empowerment Network on Vimeo.

What are the ways that Us TOO International can help prostate cancer patients and their loved ones? Jim Schraidt, a prostate cancer survivor and chairman of Us TOO’s board of directors shares how his involvement with support groups evolved after his diagnosis and how Us TOO is working to improve support for both patients and care partners.

Jim Schraidt is a prostate cancer survivor and Chairman of the Board of Directors for Us TOO International. Learn more about Jim Schraidt here.

See more from The Pro-Active Prostate Cancer Patient Toolkit

Related Resources

How Could You Benefit from Joining a Prostate Cancer Support Group?

Newly Diagnosed with Prostate Cancer? Consider These Key Steps

How Can You Insist on Better Prostate Cancer Care?


Transcript:

Jim Schraidt:              

My name is Jim Schraidt. I am now a 10-year, almost 11-year prostate cancer survivor. I was diagnosed in January of 2010 and had surgery in March of that year. Since then I’ve been involved in various support groups and some of those activities.

I found my way to a support group probably about three or four months after I was treated. And I was very active in that support group for a number of years. They helped me with a number of issues I was having at the time. And eventually I went on to become the facilitator of that group, and I’ve been in that role now for about five years.

Us TOO helped me find my initial support group. And we currently sponsor a network, a nationwide network of about 200 support groups. I became very interested in the work that Us TOO was doing, and I ran for Board, their Board of Directors. And I was elected, and I’m now finishing my sixth year on the Board and my second year as Chairman of that Board.

So, we’ve been very active in looking at the entire prostate cancer community and trying to develop new and better ways to serve patients. One of the things that we’ve accomplished in the last couple years is a partnership with a prostate cancer foundation, with is the leading private-research funder of prostate cancer research. So, we’ve worked with them to help make education about clinical trials available, for example. And they are contributing to our monthly newsletter with research news that’s actually put in laymen’s language so that people can understand it.

We’ve collaborated with other prostate cancer organizations, and we believe that this is critically important, that by working together we can amplify the patient voice and develop the best possible educational materials. So, in addition to the support groups, we have that going on. We also have a website that has a great deal of information about prostate cancer, support groups, and that sort of thing.

We are the prostate cancer sponsor for the Inspire site, which is an online community where prostate cancer patients can type in a question and have that question answered by other prostate cancer patients, or people who are knowledgeable in the field.

We actually have some practitioners that occasionally check in on that. So, then I think the final thing is that we have a couple of dial-in support groups that are for subspecialty types of patients and caregivers.

The first is called A Forum for Her, and it’s exclusively for women partners and caregivers. It gives them a separate and safe place to go and talk about the disease from a woman’s perspective. And then the second, newer dial-in support group we have is for gay men. And this is a group of men that for various reasons are less comfortable than they need to be in a broader kind of support group.

So, we’re working on that as well. One of our key initiatives as we look to celebrating our 30th year next year is support group leader education. And the goal here is to teach support group leaders best practices and make resources available to them so that they can either direct patients where to find information, or they can go back and find information and give that to patients directly.

So, the goal, once again, is to bring some standardization to the support group experience, and make sure that men are getting the best possible support and information.

Ralph Wozniak: Don’t Get Depressed, Get Informed

Interview with Ralph Wozniak, Patient Advocate

Andrew Schorr, interviews Ralph Wozniak, who has been living with advanced prostate cancer for more than 10 years. He says he overcame his disease by concentrating on the next steps in his treatment plan, and not focusing on the cancer. He urges other patients, “Don’t get depressed, get informed.” Together they discuss strategies and tools currently available for advanced prostate cancer patients to stay positive and to get informed about their disease.

Ralph Wozniak: Don’t Get Depressed, Get Informed from Patient Empowerment Network on Vimeo.

 

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Andrew Schorr:

Hello and welcome to Patient Power. I’m Andrew Schorr. I’m sitting with Ralph Wozniak, who is from Inverness, Illinois, outside of Chicago, moving to Florida pretty soon. Let’s go back to 2006. You went to the doctor and eventually were told you had prostate cancer and that maybe it was advanced. Is that right?

Ralph Wozniak:

Well, they weren’t quite sure. It was sort of borderline, but it turned out to be advanced, yeah.  It was Gleason 6—excuse me, Gleason 7.

Andrew Schorr:

So they said let’s try robotic surgery. Let’s see if we can handle it.

Ralph Wozniak:

Well, you make that—as a patient, you make that choice yourself, so reading some books, talking to the doctors, talking to the urologists.  She thought I would be a good candidate for robotic surgery.

Andrew Schorr:

So they try it.  What happened in the OR?

Ralph Wozniak:

Well, I woke up feeling pretty good. But while I was being operated on, they checked several lymph nodes. And they found that they were involved, so they aborted the surgery.

Andrew Schorr:

Okay, because it had spread.

Ralph Wozniak:

Because it had spread, correct.

Andrew Schorr:

So you’re given, if you will, the bad news.

Ralph Wozniak:

Yes.

Andrew Schorr:

How did you take that? You’re a chemical engineer by training. You’re a man used to facts and figures, statistics.  This was not good.

Ralph Wozniak:

Correct, but I overcame it very quickly and said, well, what’s the next step?  Where do we go from here?

Andrew Schorr:

Now, you’ve been through a lot of steps.

Ralph Wozniak:

Yes.

Andrew Schorr:

This was 2016 as we do this. You were having that surgery in 2007, I believe.

Ralph Wozniak:

’06.

Andrew Schorr:

2006, so 10 years, right? Come a long way.

Ralph Wozniak:

Yes.

Andrew Schorr:

You’ve had radiation, you’ve had hormone therapy, you’ve had more advanced therapy, pills and shots, etc.

Ralph Wozniak:

Right.

Andrew Schorr:

How are you doing? Because when all this started you didn’t know if you’d live very long.

Ralph Wozniak:

Yes, I didn’t know if I was going to live very long, but I just, you know, tried to be the informed patient, study hard, get the best doctors, and if you didn’t like the doctor you have to change doctors and just continue on a path.  And I chose to work very closely with Dr. Daniel Chevron at Kellogg Cancer Clinic here at North Shore Hospital and also Dr. Charles, everybody calls him Snuffy Myers in Charlottesville, Virginia, and those have been the two guys, the two doctors I’ve worked with and they’ve been great. Plus the radiation doctors, who…

Andrew Schorr:

…you have had a lot of radiation.

Ralph Wozniak:

Yeah, probably almost a hundred days.

Andrew Schorr:

So how have you dealt with that, sort of the ups and downs of treatment, then no radiation, then you’re doing well, then other stuff?  How have you dealt with that and how has your family, your wife Janet, your kids—you have six grandkids, I think.

Ralph Wozniak:

Well, everybody has been very supportive. Sure, you go through ups and downs mainly driven by how you feel because, to tell you the truth, in the first set of radiation I did get a lot of side effects, but I went to work every day. I was actually retired but retained by the company as a consultant, and I was bound and determined not to get overly worried about this.  So I went in for radiation and got in the car and went to work.

And a second set of radiations with Dr. Dattoli in Sarasota, I was spending some time in Florida, and I drove every morning, hour-and-a-half to Sarasota and had my radiation treatment. And that’s when I had the lymph node involvement, which I explained to you, and which was successful—and went up and back.

It’s, you know, it’s painful. You don’t feel good, you’re not happy, and I got to say probably the first time in my life I ever took a nap was during some of these—the second set of radiation treatments.

Andrew Schorr:

How are you doing today? So now, we’re 11 years down the road, right, just about, and we’re looking at a time when there [have] been new treatments, targeted radiation, pills, improved shots.  Lots of things have changed.  Where are we now?  Where are you in your head, and what would you say to other men who are diagnosed now?

Ralph Wozniak:

Well, first thing, I think there [are] better tools now to determine how advanced the cancer is, and I think that’s the most important thing, that you start out with the right therapy at the right time or the right set of doctors.  And so I mean there’s the 3 Tesla MRI, there [are] other scans. As I mentioned, I took the C?11 acetate PET scan, and that’s the first time with all the scans I’ve had that they’ve been able to locate some cancer in the bone.

So number one—well, number one, don’t get depressed.  Get informed. Join a support group, which I didn’t do for quite some time, because I didn’t think it was my style. But I thought it was quite good once I got into one of the Us TOO support groups. And, you know, then you have to just pick your best strategy to go forward, so that’s what I would recommend. And as far as where I stand now, I’m happy because abiraterone acetate (Zytiga) works, and I’ve been very lucky..

Andrew Schorr:

It’s worked for you.

Ralph Wozniak:

…and I’m not independent of hormone therapy yet, and got great doctors, and we’ll just keep going and see how long the Zytiga works. And if that doesn’t, maybe something else will come around.

Andrew Schorr:

How do you feel about the future?

Ralph Wozniak:

Oh, positive.  I’ve never really been too depressed about this, you know. Maybe—maybe it’s God’s will or whatever you want to say, and I just, you know, went straight in. What are you going to do? I have to say, and it’s really important, and I never give my wife enough credit.  She’s put up with some of my tantrums and my, you know, not being quite happy.  And most of it it’s driven by not feeling well, by the medicine or by the radiation, or I did have some serious side effects from the first set of radiations. And I had to go in for some ablation, laser ablation and stop the bleeding and that kind of thing. So, but all in all, I’m positive, and I feel good.

Andrew Schorr:

Good for you.  One last thing, and that is many men have trouble talking about it. They get inside themselves, the cancer’s there, it’s spread.  Maybe there will be technology or science, they hope, they hope, they hope. But still it’s all in here, too. You joined a support group. You talk about it. What would you say to men about considering that?

Ralph Wozniak:

Well, I have to be honest. I didn’t tell anybody at work except the president of the company.  I only told my family, and this is my coming out of the closet, you know. Close friends, I’ve been very open. To me, you know, having a scientific background, it’s just science, it’s chemistry, you know, it’s physics. So it happens to everybody sooner or later.

It never really bothered me to talk about it, but I didn’t want to have a situation where people were talking about me and saying I couldn’t do this, or I wouldn’t do that or trying to prejudge. So that’s why I kept it very narrowly focused, but now I’m fully retired after 11 years as a consultant, and I don’t care as much.

Andrew Schorr:

Well, I know you’re moving to Florida. I wish you a great retirement there and many years.  You know, prostate cancer may be there, but I hope you keep going and that science stays with you

Ralph Wozniak:

Thanks very much.

Andrew Schorr:

Thank you so much for sharing. All the best.  Andrew Schorr with Ralph Wozniak, a man who has been living many years with advanced prostate cancer, and his doctors and the treatments have helped him live a full life. And we hope that continues for a long time.

Remember, knowledge can be the best medicine of all.

Please remember the opinions expressed on Patient Empowerment Network are not necessarily the views of our sponsors, contributors, partners or PEN. 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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