ORLANDO -- I was scheduled to make a small bit of history. I was to be the first patient to ever speak at the meeting of the Genitourinary Cancers Symposium at the American Society of Clinical Oncology meeting at the Rosen Shingle Creek Hotel here.
Patient voices increasingly are being heard elsewhere in ASCO and at other clinical meetings.
But in this case, it almost didn't happen.
The View from the Dais
I sat on the dais with a distinguished panel of prostate cancer researchers who discussed the latest research on active surveillance. There were nearly 3,000 attendees -- medical oncologists, urologists, radiation oncologists, and geneticists. The usual suspects.
As a patient, 6 years into an AS program, I wasn't the usual suspect.
I was selected from a group of about five patients and patient advocates to join the panel. I think they wanted me because I am an AS patient. They knew me from the occasional first-person stories on prostate cancer I write for ľֱ. I was supposed to provide a patient's point-of-view during the session.
I attended a couple planning meetings on the phone. At the first meeting, co-chair , chief of urology and director of G-U Oncology at the University of Montreal, noted the session was going to have a longer-than-usual Q&A session. He suggested having case studies at the ready in case there were no questions.
I raised my hand and said I was a patient and I volunteered to be a case study. The committee went along with my suggestion.
I had several chats with panel co-chairman director of prostate brachytherapy at Dana-Farber/Brigham and Women's Cancer Center in Boston. He took my medical history and reviewed my records and used this material to introduce each speaker as they covered guidelines for care, genomics, and so on.
Carpe Diem!
The approximately 1 ½ hour session seemingly was tight and focused. Then, Nguyen handed over the moderator role to Saad. The urologist became very focused on case histories and an interactive system to have the audience vote on what care they'd recommend. He asked the panelists -- and me as a patient, as a seeming afterthought -- what we thought about a case. That wasn't why I flew down from Chicago.
The clock was running out. I was frustrated and getting increasingly angry. Would I be that missing patient voice? I was starting to think my chance to talk to 3,000 cancer docs was lost.
Saad then opened the floor to questions at one hour and 29 minutes into the session.
I decided it was now or never. The situation dripped with irony. A group that wanted to open up to patient input, forgot it had a patient on the dais.
I interrupted Saad: "Can I get a word in? I was invited to be a patient voice and I really haven't had a voice."
Saad told me to go ahead. I spoke for eight minutes.
"(Let me) point out that there's a lot of great statistics (presented) here. I'm sure that they're very important for the clinicians to treat the patients, but I haven't heard very much about the human side," I said. I reminded the doctors that they are dealing with human beings.
I praised co-panelist Freddie Hamdy, MD, University of Oxford urologist and principal investigator of the study of treatment effectiveness. He mentioned the issues of anxiety and depression in prostate cancer patients.
After the meeting, he told me patients like me may have been done a disservice by the system.
I was diagnosed in 2010 with a Gleason 6 based on a single core in a single biopsy out of six biopsies in 6 ½ years. Plus, I had contradictory MRI results.
On Any Given Day ...
If my tests had been given on a different day, I might never have been diagnosed. A single millimeter of cancer tagged me for life as "cancer patient." One surgeon -- the first one -- offered to rush me into a OR.
"The reason we are struggling with active surveillance is because we are diagnosing far too many patients who do not need to receive biopsies," Hamdy told me later. "Once you have a cancer diagnosed, you have somehow to manage it. It provokes over-treatment for many, and anxieties for those who select active surveillance. PSA has caused massive over-detection of prostate cancer globally, which is why screening is not advocated as a public health policy like it is for breast, colorectal, or cervical cancer."
Something else caught my attention that I had to tell the audience about. Saad and his fellow Canadian, MD, chief of urology at Sunnybrook Health Sciences Centre and professor of surgery at the University of Toronto, who has pioneered AS over the past quarter century, told me before the session that between 66% and 90% of Canadian men with early prostate cancer, depending on the jurisdiction, are in active surveillance programs. That was mind-blowing.
In the U.S., maybe 50% of Gleason 6 patients are in active surveillance. That's a huge increase from 2010, when I was diagnosed, when fewer than 10% of patients were in these programs. But it still lags behind the Canadian experience.
I asked why we still are far behind Canadian AS rates. Klotz told me it may in part have to do with differences in our legal systems and our medical systems. American urologists may push surgery for fear of being sued for not having operated. Also, these urologists have greater incentives to operate than if they just monitor.
I ran into Klotz later in the day. I have a warm spot for him. His research was a key factor in my decision to join an AS program.
He gave me a pat on the back for speaking up at the meeting. "You got an oar in the water," he said.
He conceded that doctors "like their data."
And he said it's true that doctors don't talk much about humanistic side of care at meetings like this. But he stressed, "It really is all about the patients."
I felt that my 8-minute spiel may have touched a nerve.
I hope so.