Freddie Hamdy, MBChB, a leading prostate cancer researcher and head of urology at University of Oxford, blew my mind when I spoke with him the other day.
He told me we are on the cusp of a revolution in active surveillance (AS) for prostate cancer — one that will in effect “cure” my cancer with a swipe of a pen as cancer will be redefined.
A prostate cancer diagnosis with a low-risk Gleason 6 changed my life in December 2010. My first urologist offered to rush me to the OR. I declined and got a second opinion. Instead, I opted for AS and have been on it ever since.
Over the past seven and a half years, I have had five biopsies. Sixty cores were removed. Only once has a biopsy showed up a tiny 1-mm shred of Gleason 6 cancer.
A urologist friend told me: “When I get my prostate cancer, I want to have what you have.”
That was reassuring, but I have been treated as a cancer patient. I have been disqualified for life insurance. And I have been on a treadmill of PSA tests, biopsies andmultiparametric MRIs.
Hamdy said a “sea change” is coming in who is diagnosed with prostate cancer and who is considered a candidate for AS. (More on that in a minute.)
I met Hamdy in February 2017 at the American Society of Clinical Oncology’s Genitourinary Cancers Symposium in Orlando. Hamdy and I sat next to each other on the stage filled with other leading lights in prostate cancer research.
I was the first patient ever to be a panelist at the meeting. I was going to congratulate ASCO for its wisdom. But it turned out that I was the forgotten man on the dais. As the session was ending, with minutes to spare, I grabbed the microphone and criticized my hosts. I told the doctors this was an example of how they don’t listen to their patients.
I wrote about this snub earlier in my MedPage Today series, after which I heard from a lot of readers, many of them my fellow prostate cancer patients.
One new acquaintance is Thrainn Thorvaldsson, a veteran AS patient with a Gleason 7, who started what may be the first support group anywhere focused on AS patients. I joked that maybe we should organize an international meeting of the world’s experts on AS and gather the first international audience of patients on AS from North America and Europe and beyond. He had a similar suggestion from a group of AS patients from the Prostate Cancer Research Institute’s meeting in Los Angeles. Great minds and all that.
Thus was born Active Surveillance Patients International, or ASPI, a non-profit to educate patients about AS. We have a draft website at ASPIconference.com, where interested patients and potential partners can find out about the conference scheduled for October 2019.
I suggested Hamdy, head of the ProtecT study and other major studies, as a speaker.
Thrainn and I, along with Mark Lichty, another AS patient from the Poconos in Pennsylvania, called Hamdy to discuss our program. The urologist agreed to speak — we contacted him so far in advance, he couldn’t think of a reason to say no — and said our timing was good. But he suggested that we we ought to refocus our program because AS is about to change dramatically.
“Over the next few years, Gleason 6s are going to be diagnosed less and less probably, if people follow the paradigm shift,” he said.
He told us that increasing use of multiparametric MRIs will lead to fewer blind biopsies and more targeted biopsies in patients with visible lesions.
“Men who don’t have anything visible are probably going to be biopsied less and less. That is going to result into quite a dramatic reduction in the number of Gleason 6s,” he said.
I asked what this might mean to patients like me. Hamdy knew my medical history from the ASCO meeting.
Hamdy said: “If you don’t mind me saying, but people like you probably will not have that diagnosis label applied to them at all. And they won’t need to go through all the extensive biopsy regimes that you had.”
Hallelujah. Maybe my colleagues and I on the AS assembly line helped future patients.
I imagine this redefining moment will be an adjustment for doctors and patients alike. Hamdy maintains that research justifies this step.
He thinks the AS population will decline as the number of Gleason 6 patients shrinks and will include more patients with Gleason 7, a diagnosis that long has struck terror in the hearts of many doctors and patients. Thanks to research like Hamdy’s, doctors are starting to understand which Gleason 7 patients can go slow with AS and which need aggressive treatment.
He suggested that we broaden ASPI’s target market to include Gleason 7 patients with “intermediate risk.” “If you really want to benefit other men and bring that awareness, I think you should probably go along these lines,” he told us.
He said his data shows that, surprisingly, some Gleason 7 cases have not progressed at 10-year average follow-up from diagnosis. “When most physicians see Gleason 7, they freak out and they say, ‘Oh no, no, no, no. Let’s jump for treatment.’ I think the indications for active surveillance can be stretched, can be extended. But the more you extend them, the more risk you’re taking. And it’s a balance of risks at the end of the day,” he said.
“To be honest, if you’re going to have a conference which is only going to discuss what do you do with a low-volume, low-risk and very low-risk Gleason 6, you don’t need to have a conference because there is pretty much a consensus that these patients should be first on active surveillance. But I think if you’re going to expand into whether we can stretch the indication for active surveillance and can patients make informed choices, I think you really are going to do a lot of good to at least have people start to think that there are options beyond jumping straight into radical treatments.”
We are adjusting our program.
