Former NIH director Francis Collins, MD, PhD, one of America's most prominent physicians and the leader of the ground-breaking Human Genome Project, has gone public with his "aggressive" prostate cancer diagnosis. As he revealed in an op-ed in the Washington Post on April 12, he has been on active surveillance (AS) for the last 5 years since his doctor noted his slow-growing grade of prostate cancer, and just recently became aware of a sudden progression in his cancer. He is planning to undergo a radical prostatectomy later this month.
He said he was going public to help other men -- he wants "to lift the veil and share lifesaving information."
But I have to ask, why did he choose to wait to share his story until his cancer became potentially deadly? My concern is that his experience could scare other men, newly diagnosed with lower-risk prostate cancer, into avoiding AS (close monitoring, which is considered the for low-risk prostate cancer). For others who are already on AS, it could lead to "anxious surveillance" -- deciding enough is enough and quitting the protocol to opt for more invasive treatment because they fear their cancer may pose a serious threat.
Only time will tell. But, without a doubt, such a diagnosis can become ever more shocking and frightening when it happens to one of the world's leading doctors.
So, in order to quell the fears of men currently on AS, I spoke with several leading experts to determine how common Collins's situation really is -- based on what he has shared publicly. Collins declined my interview request to address issues about his case.
What We Know About Collins's Diagnosis
that a test showed he had a 22 ng/mL PSA (prostate-specific antigen) blood level, which at his age -- 73 years old when he published the op-ed, now 74 -- should be less than 5 ng/mL PSA. But he didn't share the level of his previous PSA, one of many unanswered questions. He also didn't say what his Gleason score was from a previous biopsy. But this time around, Collins's Gleason reached a 9 -- on the 10-point scale.
From the point of view of a prostate cancer patient like me (with a very low-risk Gleason 6 cancer), it's alarming that something like this could develop seemingly overnight.
What exactly happened? And how common is this situation?
The Experts Weigh In
After Collins's commentary was published, I received many emails from patients on AS, as well as advocates, and also exchanged emails with some of the world's leading prostate experts.
Paul Schellhammer, MD, is a prostate cancer patient, a urologist, and a professor emeritus at East Virginia ľֱ School. He's also involved in urology research, and is a past president of the American Urological Association (but is not speaking for them).
Schellhammer wondered whether Collins's seemingly rapid PSA and Gleason score increases were "a black swan event," or, in other words, a rarity.
I also spoke with two of the "fathers" of AS -- Laurence Klotz, MD, and Peter Carroll, MD, MPH, who pioneered AS in the 1990s -- to find out what they thought. Both confirmed that cases like Collins's occur, but they are rare. They offered reassurance to AS patients.
Klotz, of the University of Toronto, said, "There is a saying in law, 'Bad cases make bad law.' A case like this doesn't change anything at all. Cases like this are well documented but are rare -- perhaps 0.1 to 0.5% of men on surveillance. Biology is dynamic, and perfection in anything is not attainable."
Carroll, of the University of California San Francisco, backed Klotz.
He said: "I agree completely [that] this is a rare event. I have seen them, but they are exceedingly uncommon. The data on AS is clear and refined and supports its widespread use in well-evaluated patients. It would be unfortunate, to say the least, that a very rare event leads us back to the era when too many men underwent treatment with its attendant costs [psychological, physical, and monetary] with no benefit."
Carroll emphasized what Collins has thus far not disclosed: "We do not know the details of his case [PI-RADS at diagnosis, PSA Density, tumor volume, frequency of testing, etc.]. Such knowledge refines risk."
Meanwhile, I continued to wonder: will patients be scared off of AS? This is more a matter of education and communication with the low-risk prostate cancer population. Collins cited statistics showing that around 40% of men over 65 have been diagnosed with low-grade prostate cancer: "Many of them never know it, and very few of them develop advanced disease," he wrote.
Schellhammer warned: "The AS community [patients and physicians] need to be concerned and aware about the emotional weight of risk in the risk/benefit equation of AS decision-making."
He worries that Collins's experience will scare some patients into unnecessary treatment, potentially resulting in impotence and incontinence, even though their low-grade cancer is unlikely to spread or kill them.
Mark Lichty, a 19-year patient on AS and chair of Active Surveillance Patients International, the first global support and education group for AS, conceded some patients may be scared off, but he believes the rarity of what happened to Collins should be reassuring.
Personally, I suspect most patients will understand and accept what happened to Collins and go on with their lives. But I also know some men are skittish, and hearing about Collins's case may be enough to push them into unnecessary treatment. Doctors and support groups need to reassure patients that the science is on the side of AS for low-risk patients, and they should continue follow-up discussions and education.
As for me, I still hope that Collins will share more about his case. It could help patients clarify their understanding and inform their decisions.
Howard Wolinsky is a Chicago-based medical writer. He has been on active surveillance for very low-risk prostate cancer for 13 years.