This interview, “Mr. Tony Crispino: Patient + Research Advocacy,” is provided by Grand Rounds in Urology’s content partner, Prostatepedia.
Mr. Tony Crispino found out that he had prostate cancer at age 44. In the years since his treatment, he has become an outspoken prostate cancer advocate. Today, he runs a support group for other patients in Las Vegas, Nevada and is a Patient Advocate at Southwest Oncology Group (SWOG) where he works with leaders in prostate cancer research on cutting-edge clinical trials.
He spoke with Prostatepedia about his own journey as well as ways in which you can get involved in advocacy.
How did you find out that you had prostate cancer?
Mr. Crispino: Like most, I was asymptomatic. I was 44 years old and had no reason to believe that I had cancer. I wasn’t even aware that I had a PSA test taken, and I was unaware of what PSA was. It was by chance that I’d had a diagnostic PSA, which was at 20, and then I found out that I had stage IIIB disease.
Which treatment path did you take?
Mr. Crispino: Being diagnosed in 2006, I had fewer options than patients have today. We didn’t have Zytiga (abiraterone), Xtandi (enzalutamide), or Erleada (apalutamide) then. The path I chose was not considered standard-of-care yet, but eventually, it became that for guys with locally advanced disease. I read papers from Harvard, Stanford, UCSF, UCLA, and more, and I decided that a multimodal approach was reasonable. So radiotherapy, hormonal therapy, and participation in research trials were all reasonable. Today, I would likely be offered Zytiga (abiraterone) [per STAMPEDE], six cycles of Taxotere (docetaxel) [per CHAARTED], or both. But I am fortunate to have a good outcome with what I chose. I have not been treated since 2010, and I have a durable remission.
Has the prostate cancer journey changed you in any way?
Mr. Crispino: A cancer diagnosis is a life changing experience for most. Nearly all who are diagnosed and their families have a new reality. My well-known mantra to others diagnosed is to stay positive. I followed that rule, and once I came to understand my condition, it was time to take that lemon and make lemonade. My negatives are obvious, but my positives outweigh them. I have done well with advanced disease and that helps as there are many who are not as fortunate, and it becomes more difficult for them to stay positive.
I got involved as an advocate, which has been one of the blessings in my life. I have been actively involved in support, mentoring, research, serving on guidelines panels, and lobbying, and I have authored many physician-facing documents. I would have never had those opportunities without that diagnosis, and I would never have dreamed of being a part of them.
How did you first become involved with prostate cancer patient advocacy?
Mr. Crispino: Almost immediately, I was an online surfer like never before trying to regain control of my life. It was through this method that I became educated, a support group leader, and determined to be a part of cancer treatment as more than a patient. But first I had to experience the support I received from all those who paved the way ahead of me.
What do you do with Us TOO and SWOG?
Mr. Crispino: Us TOO is education and support. I am well equipped to help in these areas, and I have run the Las Vegas chapter for over 10 years.
SWOG is a fantastic experience. There are only four such networks in the National Cancer Institute (NCI) group called the National Clinical Trials Network (NCTN). Being included in clinical trial design and evaluation is a very unique experience that very few patient representatives in this area of research get to participate in. SWOG has led me to my membership in societies like ASCO, participation in guidelines panels for ASCO, AUA, SUO, ASTRO, and being elected to the Prostate Task Force for the NCI.
Why do you continue reaching out to other men with prostate cancer?
Mr. Crispino: I have a great deal of experience across the board. It is not only helpful to the diagnosed patient but rewarding to be able to help others. Reaching out to the patient community allows me to help the physician community and vice versa. It is very fulfilling.
Do you have any advice for other men with prostate cancer?
Mr. Crispino: Get educated. I tell all those I mentor that educated decisions are always better than emotional decisions or passing the decision on to your oncologist. Shared decision making requires that you have some knowledge before a decision.
Beware of bias, as there is plenty of it in the patient and physician communities. Beware of conflicts of interest, as there is plenty of it in the physician community. Even with good intentions, biases and conflicts of interests are common.
Do you have any advice for men with prostate cancer who’d like to get involved with advocacy but aren’t sure how to go about it?
Mr. Crispino: Just do it! Many of the positions I hold are elected and have term limits. This means that someone has to grab the baton and move the effort forward when I move on. Being a part of effective advocacy requires many things.
Become educated through peer groups and reading, and by that I mean, listen to all experiences and take notes.
Lose or limit your biases. This is easier said than done. We all think that our decisions are the best and can apply to everyone in the same way. Strong bias might help in the physician and patient communities, but it’s not a good trait in research and guidelines panels. It can be harmful in support and education communities.
Define the area in which you think you can be the best advocate. Being an advocate is a broad role. You can lobby and participate in the political side, which I did but I found it wasn’t my niche. You can be a research advocate, a support advocate, a patient-physician liaison, or even an online poster.
Partake in physician-patient group meetings. Whether it’s attending an ASCO, AUA, ASTRO, or coalition meeting, be there. You will see what it’s about and whether it’s for you. This is not always easy as these types of group meetings can require travel. If you cannot do that, you can still be an effective support advocate in various ways. For example, you could advocate online or by attending support groups meetings.