Tony Crispino isn’t a doctor. He doesn’t play one on TV. But he’s become so knowledgeable about the science underlying prostate cancer research that he’s at times mistaken for one. After a session reviewing proposed research or new treatment guidelines in prostate cancer, he says, "sometimes doctors come up to me and ask me where do I practice. I say, 'In my garage with my electric guitar.'"

Crispino is, of course, not an oncologist (or professional guitarist) but a prostate cancer patient advocate with SWOG’s GU Committee. His love of immersing himself in cancer science and his ability to follow its intricacies while always keeping the interest of the patients he represents first have made him an invaluable asset to the GU Committee during the development of numerous trials.

Those abilities have also led to a seat on the prostate cancer task force of the NCI’s GU Steering Committee and his being recruited by several professional organizations to serve on committees developing guidelines for treatment and for the use of molecular biomarkers. He has, for example, contributed to recent guidelines issued by the American Urological Association, the American Society for Radiation Oncology, and the Society of Urologic Oncology, as well as to prostate cancer testing guidelines published by ASCO. He also currently serves on three additional guideline panels.

Crispino says participating on such panels is in part an avenue for educating himself and maintaining connections with cancer researchers. His belief in the need for continual learning by advocates is a value also reflected in the advice he gives to patients in support groups such as UsTOO International, encouraging them to “learn and make educated decisions as opposed to making emotional decisions.” He has served for a decade as president of the Las Vegas chapter of UsTOO, an international prostate cancer education and support group.

As a patient himself, Crispino was diagnosed with advanced prostate cancer in 2006 and underwent surgery, radiation, and hormone therapy. His cancer has since been in remission, and although he knows well that remission can be fleeting, he has lived as a cancer survivor long enough to no longer get nervous when he goes in to have his PSA level tested.

Nonetheless, “I am the patient survivor,” he says, “and who I’m asked to represent in my role with SWOG is these patients.” 

Crispino’s past advocacy work included trips to Capitol Hill and other seats of power to lobby for increased funding for prostate cancer, an activity he now leaves to others better suited for it. He says his real niche as an advocate is being a member of SWOG research teams. “Today I’m more excited to meet the young and up-and-coming physicians that are going to lead the next 20 years of cancer research than I am about meeting members of Congress.”

As one of our longest-serving advocates, Crispino has gotten to follow a number of trials through their full lifecycle, such as S1216. At his first SWOG group meeting in the fall of 2012, he worked with the S1216 study team on the trial’s informed consent template and to identify and address sticking points that could dissuade potential participants from enrolling. 

He also noticed a discrepancy in the protocol and had to swallow his doubts and bring it up with the study team. “Here I was a first-timer going on in there to the PI and telling him ‘I think that you’ve got this wrong.’” The incident was a learning experience he remembers vividly. “Dr. Neeraj Agarwal, the PI, listened well, looked at the document, and came back to me and said ‘you’re right.’” He says the interaction gave him the confidence to be able to come forward and say “I think that you’re missing some things here.”

Almost nine years later, Crispino was a co-author on the abstract summarizing the results of S1216, which was presented at ASCO last month. “S1216 let us understand that, number one, patients are living longer – this trial proved it. And the second part of it was that we have a lot of new information to build future trials on.”

Crispino joined SWOG’s team of patient advocates in 2012, before that team had even been formally recognized as a committee (it was then the “patient advocate group”). As such, he says, he has been privileged to see the development and professionalization of our advocates into the largest and, to his mind, most impressive group in the NCTN. 

The length of his tenure, however, means he will soon run up against term limits and will pass the prostate cancer advocate torch to a successor. “There are going to be other patient advocates to come on in behind me, and I’m absolutely encouraged by seeing the group that we’ve been able to recruit.”

As someone who truly loves learning, Crispino identifies the discovery of new knowledge as what he has enjoyed most about working with SWOG. “There’s always something new,” he says. “We’re always looking at some other way to get ahead of cancer – and that’s exciting.”

I totally agree, it is exciting, and advocates like Tony help us enormously in keeping those exciting discoveries coming and in ensuring they’re discoveries that make a difference for our patients!

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