Active surveillance for low-risk prostate cancer: Why can’t America be more like Sweden?
By Howard Wolinsky
What is Sweden best known for?
Well, for starters, there are ABBA, Volvo, IKEA, köttbullar and lingonberry, director Ingmar Bergman, “I’m Curious” Yellow and Blue, and Stockholm, the capital, the “Paris of the North ‘’ with an art gallery superimposed on its subway system.
And then there is active surveillance (AS).
Yes, AS. It’s a strategy for monitoring low-risk prostate cancer rather than rushing into radical surgery or radiation to destroy the prostate and the cancer contained within.
Prostate cancer is a worldwide plague for men. Prostate cancer is the second most frequent malignancy (after lung cancer) in men worldwide, with 1.3 million new cases causing 358,989 deaths. In the U.S. in 2021, there will have been 250,000 prostate cancer diagnoses and 34,000 deaths, according to the American Cancer Society.
Sweden leads the world in AS.
The incidence of prostate cancer per 100,000 population in Sweden and the United States is about the same, 103 vs. 104.
But the use of the kinder, gentler AS approach is world’s apart in Sweden and the United States, even though the concept was introduced in North America about 30 years ago about a decade earlier than in Sweden.
Nationally, the initial AS adoption rate of AS in men with low-risk prostate cancer is 85% in Sweden vs. about 50% in the United States.
(Sweden’s numbers are based on an excellent system of national statistics in Sweden. U.S. numbers are based on best estimates from experts.)
Sweden’s AS rate about double that in the U.S.
If you look at what’s called very low-risk prostate cancer with a single “core” of confirmed low-volume cancer, the results are even more striking. Ninety-five percent of Swedish men opt for AS. In fact, 100% of men in some Swedish counties are on board with AS, according to Ola Bratt, MD, a leading Swedish urological surgeon and professor of clinical cancer epidemiology at the University of Gothenburg.
(Note: Bratt gave a presentation in October to the ASPI group: “Active Surveillance: The Sweet Smell of Success in Sweden.” Go to: https://aspatients.org/meeting-videos/)
In the U.S., about 50% of these men opt for AS. Of course, that means that 50% undergo unnecessary surgery or radiation, with risks, especially with surgery, for impotence and incontinence.
AS acceptance has increased dramatically from a decade ago, when I was diagnosed with very low-risk prostate cancer. Then, only 6–10% of patients went on AS. So the numbers have increased in the U.S. but lagged well behind Sweden.
Viva la difference in Sweden
Why such a big difference between Sweden and the United States?
Sweden has a national public healthcare system for everyone funded by taxpayer dollars while in the United States men with prostate cancer typically diagnosed at age 66, are on commercial insurance or Medicare, the government-run medical system for seniors.
Lower incentives in Sweden
The incentives for treatment are lower in Sweden: Urologists in the public health system are paid the same whether they perform surgery or follow a man with AS.
Incentives are a key factor here. Urologists in practices within universities and many Department of Veterans Affairs hospitals report AS acceptance rates comparable to those in Sweden. (However, some VA hospitals report very low AS acceptance rates.)
A small number of Swedes (about 10%) have private health insurance with the aim of seeing doctors faster.
Stockholm has the lowest AS rates
Stockholm has the highest proportion of private urologists and also has Sweden’s private hospital with a robotic surgery system. Stockholm has the lowest adoption of AS, about 85%, still well above U.S. averages.
Bratt said, “There is no financial benefit for urologists in Sweden to operate on men with prostate cancer. It’s a fact that many urologists in the U.S. have become very wealthy indeed because of the boom of PSA testing (for prostate cancer) in the 1990s, which in turn produced a boom of radical prostatectomies, and of course — I’m not saying that U.S. urologists think more about money than the patient’s benefit, but of course, it does affect the national statistics.”
Medicolegal systems may drive surgical rates
He pointed to another major difference between Sweden and the United States: Our medicolegal systems. Americans are known as being among the most litigious people on the planet. We have the access and the will to bring suits.
Bratt observed: “Or medicolegal systems are different, which may be more important to be honest. If I had a man in front of me and I miss the window of curability and delay radical treatment a year too long, he would develop metastatic disease or quick recurrence after surgery.
“I guess that could potentially lead to a lawsuit in the US if you have not strictly followed the guidelines for active surveillance. It wouldn’t happen in Sweden. So, probably nothing at all would happen, and if anything, if the patient went to the authorities, it would be at most a kind of warning for the urologist. And there wouldn’t be a suit for a million dollars, which I think can happen in the U.S.
AS is a hard sell to couples
Admittedly, AS is a hard sell to patients and their spouses/partners — prostate cancer truly is a “couple’s disease.” AS is counterintuitive since the knee-jerk reaction upon getting the diagnosis is to eradicate even a tiny spot of cancer. Some spouses/partners worry that the man is playing Russian roulette, picking a dangerous approach simply to protect their sex lives or shunning curative surgery that potentially could end their sex lives forever.
This is true even as doctors have long touted “nerve-sparing surgery,” which may not deliver on the promise. And robotic surgery — magical as it sounds — is no panacea. So don’t be fooled. The surgeon you pick may be more important than the tools he/she picks to perform surgery.
Surgeons in Sweden apparently are more comfortable than their U.S. counterparts in recommending AS, a protocol that can raise anxiety levels in doctors and patients alike.
Dr. Laurence Klotz, of the University of Toronto, who pioneered AS and even coined the term “active surveillance,” noted that anxiety experienced by urologists themselves over not treating cancers can lead them to promote interventions. He thinks that data show that radiation oncologists are more inclined than urologists to push treatment.
I can vouch for Klotz’s views on urologists anyway. In 2010, a urologist in private practice outside Chicago, summoned me and my wife Judi to come to his office following a transrectal biopsy. He told us: “I have bad news and good news. The bad news is you have cancer. The good news is I have an opening next Tuesday in my operating room.”
He was promising a “cure” while downplaying the potential damage to quality of life and also seemingly ignoring the fact that I had a low-risk, single core of a slow-growing cancer, one I likely could live with and not die from.
I asked him about AS. “I don’t support that modality,” he said.
Being confronted with a diagnosis of cancer is a watershed moment in a life. I was lucky. I was an experienced medical writer who could easily research health issues and reach top experts in the field.
I found Dr. Scott Egenner at the University of Chicago, an early proponent of AS, scheduled a second opinion from him the day after I saw the first urologist.
Eggener told me I could fare well with surgery, but actually I didn’t need it. He showed me research by Klotz and others showing that 10-year survival rates were identical in men who underwent surgery or radiation or who opted for AS. These numbers have been replicated in several studies.
I concluded if it all were the same, why not go on AS and avoid the risk of damaging quality of life.
‘Poster boy for AS’
Eggener told me I was the “poster boy for AS” and predicted that 10 years from that December day in 2010 that my cancer likely wouldn’t grow. In fact, my “lame cancer,” as another urologist called it, was never seen again in four follow-up biopsies and one MRI scan done as part of the AS protocol.My PSA stabilized at around 5.
Of course, some men, about one-third to one-half leave AS within five years largely because their cancer advanced or because they are finding it difficult psychologically to live with even a lame cancer
Men with low-risk prostate cancer have a pattern under the microscope identified by pathologists as Gleason 3+3=6. Gleason scores indicate how aggressive a cancer is based on visual patterns. Scores below Gleason 5 are no longer considered cancer.
Gleason 7 and above to Gleason 10 are considered more aggressive. But even men with a Gleason 3+4 score can go on AS, though fewer than 20% of them do so.
Another difference between Sweden (and Canada) vs. the U.S. is that we have different surgical cultures. Surgeons are trained to do surgery, just as the carpenter is trained to use a hammer and saw. I call this the “rule of the tool.”
Klotz said different surgical cultures are based on where the surgeon practices and was trained. I assume my first urologist wanted to operate on me ASAP based on a genuine intent to prevent the worst consequences of prostate cancer — not because he wanted to buy a new sports car. (I hear U.S. surgeons only get a fee of about $1,500 to perform this two-hour-long, bloody operation to remove the prostate. I think biopsies may pay better if they do enough of them.)
Bratt said it was not known in the early days of this century that low-risk prostate cancer simply does not metastasize or spread. Now doctors like Klotz, Bratt, and Eggener stress that true Gleason 6 “cancers” will never kill you. (Yes, some doctors still debate this, and others like Eggener want doctors to reclassify indolent tumors designated Gleason 6 as something other than cancer.)
Bratt said: “We now know that what is called Gleason pattern 3+3 prostate cancer — in other words, low-grade prostate cancer — does not metastasize. We didn’t know that when we started using active surveillance around 2005, 2010. Studies emerged in the 2010s, so. I’d say in the past five to 10 years, that we can confidently say to a man with a Gleason pattern 6 prostate cancer that your cancer, the cancer that we found in your prostate, will not metastasize. It will not spread to other organs. It will not kill you.”
One of the problems with AS is that up to one-half of men leave the protocol within five years. Most leave because testing — PSAs, MRIs, biopsies — shows that the cancer has advanced to 4+3 or above, and the time has come for aggressive treatment. Other men leave AS leave of family pressure, anxiety or depression.
The ‘dark passenger’
Co-existing with prostate cancer and this dark passenger’s potentially very scary extreme outcomes may be too much for these men to accept, About 30% of men on active surveillance become anxious when it’s time for a PSA test, MRI, biopsy, or a visit the urologist, according to a survey conducted of members of AnCan and Active Surveillance Patients International, advocacy, support, and education groups. (About half of these men were anxious before they were diagnosed with prostate cancer and went on “anxious surveillance.”)
Researchers in the Netherlands and Italy are trying to find ways to keep men who qualify on an AS journey. More research is needed to keep those who can remain on AS and avoid undergoing unnecessary surgery.
Bedside manner matters
Bedside manner is also an important factor in persuading men like me taking a leap of faith and reason into AS, or plunging into surgery. Klotz said the urologist’s expression may be enough to sway a patient to undergo surgery or not.
Bratt has found he can help men with low-risk prostate cancer avoid anxiety by telling them they have “a cancer you will never need to treat.”
Klotz said he can talk men with low-risk disease off the ledge by informing them that they have a “pseudo-cancer,” simply a part of the aging process that has never been shown to kill anyone
On December 15, 2010, a private-practice urologist strongly recommended I undergo surgical removal of my prostate. The next day, an academic urologist told me I’d fare just as well on AS.
It disappoints me that this issue hasn’t yet been resolved in the past decade. I urge all men diagnosed with prostate cancer to get a second opinion. What a difference a decade, even a day can make.
AS has been the gift that keeps on giving. Patients like me may never need “definitive” treatment as we learn to live with our cancers.
We, American patients and doctors, need to learn the lessons about AS taught by our Swedish counterparts.
Viva la Sweden! Viva AS!
Howard Wolinsky is a Chicago-based medical freelance writer and was the medical reporter for the Chicago Sun-Times for 25 years. He has been on active surveillance for very low-risk prostate cancer since 2011 and is co-founder of Active Surveillance Patients International (aspatients.org), a support and advocacy group for men on AS, and the weekly AS Virtual Support Group on the AnCan platform (AnCan.org).