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Choosing the right treatment option for prostate cancer can be overwhelming, and sometimes a lack of information or second opinion can lead to a wrong decision.
The treatment options for men with prostate cancer are constantly evolving, adding further stress to an already challenging decision. Before receiving treatment, men should receive a second opinion and fully understand their options, according to Jim Schraidt, a prostate cancer survivor from Chicago who leads a support group for Us TOO International, a nonprofit that provides educational resources and support services for the prostate cancer community at no charge.
“One of the most important things that I've found that we do is to help men make treatment decisions,” says Schraidt, referring to the services provided by Us TOO. “We provide men with the information they need to make the best possible decisions, and then we provide the support to help them achieve the best possible outcome from their treatment.”
Schraidt was treated for prostate cancer in 2010, at the age of 58. He received a radical prostatectomy, a decision that he later regretted. Shortly following treatment, Schraidt discovered the Us TOO Gilda's Club Chicago support group.
“I did not have a support group available to me when I made my treatment decision, I didn't know about it, and I didn't find it,” says Schraidt. “I am in the category of people who are very disappointed with the outcome and really unhappy with the information that the medical community makes available to patients who are facing treatment.”
Following his surgery, Schraidt frequently read blogs on the Us TOO website focused on radical prostatectomy and intimacy issues. Through this interaction, he received answers to his questions and much-needed support.
“I met people on those blogs who helped me a lot. For some of them, we moved to the point where we talked on the phone,” Schraidt recalled. “There are wonderful people out there who are incredibly generous with their time who are willing to help patients. That was a very important thing to me, personally.”
The power of information comes in many shapes. Outside of treatment selection and follow-up care, Schraidt emphasized the importance of seeking a second opinion for all newly diagnosed men with prostate cancer.
In an example, a man sought advice from the Chicago Us TOO support group following a prostate cancer diagnosis and a recommendation to pursue immediate surgery. Us TOO recommended a second opinion, and the man's slides were sent to Johns Hopkins in Baltimore.
He didn't have prostate cancer.
While this example may be rare, when treatment is needed, Us TOO continues to offer a variety of services to help expedite the healing process. The nonprofit has approximately 300 local support groups and a toll-free help line for questions. Through this service, men can speak directly with volunteers who have a first-hand experience with prostate cancer.
“Whether you're dealing with sexual issues or incontinence, it is good to know what is out there and how other people coped with these issues,” says Schraidt. “For me, it helped me recognize that I had a depression issue, and I got help and treatment for that.”
The best outcomes can be achieved for men who discover support services before receiving treatment. However, discovery of groups like Us TOO remains an ongoing challenge.
“We're trying to integrate the support structure into the standard of care. That has been a goal of mine, because we've seen the good that we can do for individual patients who are entering this process,” Schraidt says. “I like to think that we provide a place, through the physical support groups or through the online resources, where these men can go to get some help.”
For men with an unusual screening test or who have yet to undergo a biopsy, Schraidt recommends a multiparametric MRI. Additionally, through conversations at the support group, it is easy to receive advice on which physician to visit, placing further importance on face-to-face meetings.
“I am a board member for Us TOO, because I want to expand what we do and develop best practices. It comes from wanting to give back, because they've helped me tremendously,” concluded Schraidt. “Helping people, I have found, is really instrumental in my own healing, and I think that is true for other patients.”