Thirty years ago, researchers from Sweden, Finland, and Iceland embarked on a landmark study of nearly 700 men with prostate cancer.
The men were randomized to two groups; one underwent radical prostatectomy and the other, “watchful waiting” (WW), with treatment only for symptoms. They were followed for an average of 23 years. 80% are now deceased.
The Scandinavian Prostate Cancer Group published another report last week on its Number 4 study (SPCG-4) in the New England Journal of Medicine. It showed men who underwent radical prostatectomy lived an average 2.9 years longer than those undergoing the original crude approach of watchful waiting.
This doesn’t mean all men with prostate cancer ought to run out and undergo radical surgery. The researchers found that it was possible to predict which patients were more likely to die from prostate cancer based on the presence of extracapsular extension in biopsies and high Gleason scores (8 or 9).
Scott Eggener, MD, co-director of the University of Chicago Prostate Cancer Program, who diagnosed me with very early stage prostate cancer (Gleason 3+3 in a single core) and put me on the path of active surveillance (AS) in December 2010, took a look at the study.
He said there has been a sea change in prostate cancer diagnosis and treatment since the study launched in 1989. Prostate-specific antigen (PSA) screening and testing to monitor the disease has been common, but rare back then in Scandinavia. AS has developed as a strategy distinct from WW with new tools to follow the disease, including multiparametric MRI and fusion biopsies.
I was stunned to read that 695 men were randomly assigned to undergo surgery or to go untreated. Personally, I would have wanted more say in my fate. But these brave men took a bold step into the unknown to help future generations. We men with prostate cancer owe them a debt of gratitude.
“It’s incredibly important to frame the study in the context of who these patients were. They’re very different than the typical patient we see today,” Eggener said. “Eighty-eight percent of the men had palpable disease, meaning their cancer was large enough that you could feel it on the prostate exam. These were more advanced patients than we typically see today. And so the findings aren’t exactly easy to extrapolate.”
Back in 1989, when the first patients were enrolled, PSAs were rare and had not been adopted as routine tools for screening or following prostate cancer in Scandinavia. Eggener noted average PSA at diagnosis was 13 ng/mL and very few men were diagnosed through a screening program.
About one-third of the men in the study died from prostate cancer. This included 71 in the surgical group and 110 with WW. Researchers calculated that 12% of prostatectomy patients avoided death from prostate cancer. Most died from causes other than prostate cancer.
Eggener said the Scandinavian study largely is a “historic piece,” with rich data on the natural history of prostate cancer.
He stressed that the WW followed in the late 1980s doesn’t resemble the modern concept of AS with PSA testing, multiparametric MRI, and fusion biopsies. Patients from countries where WW was followed years ago experienced high mortality rates for prostate cancer.
Eggener said, “Watchful waiting is not the same as active surveillance. Way too many men died because, number one, these patients probably weren’t the best candidates for surveillance, and number two, this was a nihilistic watchful-waiting approach compared with active surveillance and modern strategies.”
He said there is nothing in the study that pertains to AS patients like me. Still, it is interesting to see how much has changed since the Scandinavian study began and the subsequent emergence of AS.
When I was diagnosed almost 10 years ago, between 6% and 10% of patients with low-risk cancers (PSA <10 ng/mL, Gleason 6) went on AS. Eggener and I were outliers then. Now, we are the standard bearers.
Back in 2010, he told me then I was the “poster child for AS.” I now enter my ninth year on AS without ever needing any prostate cancer treatment. I really didn’t feel I was taking a leap of faith. I believed in the research findings of Laurence Klotz, MD, at the University of Toronto, that Eggener shared with me.
Now, more American urologists and early-stage prostate cancer patients are on the AS bandwagon. About 50% of American patients like me are on AS, a more than fivefold growth in eight years.
American prostate cancer care has a long way to go.
Eggener said he’d like to see America go the way of Sweden, where 90% of patients with early-stage disease are on AS. The Swedes still have a lot to teach us about treating prostate cancer and learning to live with it.
Howard Wolinsky is a medical journalist based in the Chicago area. He has been blogging for MedPage Today about his experiences with active surveillance since February 2016. Read more of his posts here.