In the run-up to the holidays 11 years ago, a doctor gave me a gift that keeps on giving.
Just one day after being diagnosed with prostate cancer at age 63 and being told by a private-practice urologist that I needed a “cure” — surgery to have my prostate removed (which, by the way, carried the very real possibility of a permanent end to my sex life and urinary incontinence) — a doctor at the University of Chicago gave me an encouraging second opinion: while I could fare well with surgery, an emerging approach known as active surveillance (AS) could be a good option for me. He even called me the “poster boy” for it.
I hadn’t experienced a single symptom of prostate cancer. My only warning was a rise in the amount of prostate-specific antigen (PSA) in my blood — which was still below the cancer cutoff of 4.0, meaning my cancer was at a very early stage.
The second urologist shared with me the results of research by Laurence Klotz, a pioneering Canadian urologist, showing that virtually all men like me with low-risk prostate cancer were alive 10 years after undergoing radical prostate removal surgery, after undergoing radiation treatment to kill cancer cells, or after following active surveillance, a strategy in which the cancer is closely monitored and treatment begun only if the cancer became aggressive. The second doctor assured me there would be plenty of time to intervene with surgery or radiation should that happen.
Surgery to remove the prostate, a sexual gland, is a long and bloody operation that carries high risks of erectile dysfunction and incontinence. Radiation therapy, an alternative approach, can come with side effects such as frequent urination and burning, diarrhea, and rectal bleeding.
Active surveillance, I was told, would let me avoid the side effects of surgery and radiation while maintaining normal sexual and urinary function without jeopardizing my survival — Klotz’s research and studies that followed showed that men who chose active surveillance had the same 10-year survival rate as those who had surgery or radiation.
This management strategy for prostate cancer basically entails one or two PSA blood tests per year, an MRI every few years, a prostate biopsy every two to five years and, in some men, especially those with intermediate prostate cancer who are on the fence between active surveillance and surgery, tests of genetic markers that can predict how aggressive a cancer may be, which can tip the scales on choosing active surveillance or surgery or radiation therapy.
Even though the first urologist pushed the panic button, choosing active surveillance was a no-brainer for me because the research showed it was a safe approach that avoided the sexual and urinary side effects and had the same 10-year survival as surgery or radiation. Why bother, I figured, with aggressive treatment when it added nothing to longevity?
Although active surveillance has been around for almost 30 years, acceptance has been slow. That’s due in large part because most people think that cancer needs to be removed or blasted out of existence ASAP. That’s certainly true for some types of cancer, including rapidly growing or spreading prostate cancer. But low-risk prostate cancer like mine, confined to the gland and low in volume, is different.
My current urologist once described my cancer as lazy. Others call these cancers indolent, meaning slow growing. In fact, the growth is so slow that most men like me almost always die from something other than prostate cancer.
In fact, doctors don’t agree whether tumors like mine should be considered cancer. In fact, some urologists want to reclassify them as noncancerous to reduce anxiety levels in patients and doctors alike.
So far, there isn’t a single protocol for active surveillance. The approach varies from country to country, doctor to doctor, and patient to patient, depending on such data as a pathologist’s exam of the cancerous tissue, age, family history, testing for worrisome genes like BRCA, genomic testing of the cancer, life expectancy, and other factors.
Active surveillance has been a hard sell for some men with low-risk prostate cancer, as well for their spouses or partners, and even for their doctors. The idea of living with cancer can be a difficult concept to accept, especially for individuals already coping with anxiety or depression, who wake up each day worried that the dark passenger lurking in their prostates may be growing. A study of members of prostate cancer support and education groups I helped start found that more than 30% of men on active surveillance have a hard time when they are about to have doctor visits, PSA tests, MRIs, and biopsies. It can be bad enough to drive some men to choose treatment.
A decade ago, when I chose active surveillance, few other men were making the same decision — only about 6% to 10% of American men who were considered candidates for active surveillance, my doctor told me then. Today, about 55% of men who are candidates for active surveillance opt for it, according to Memorial Sloan Kettering Cancer Center and other sources. At major medical centers like Memorial Sloan Kettering and the University of Chicago, the acceptance rate is now closer to 90%.
The growth of active surveillance has come as word of success spread and urologists grew more comfortable with the strategy of monitoring slow-growing prostate cancer and intervening only if there are signs the cancer is becoming aggressive. Other work confirming Klotz’s research, including the Canary Prostate Active Surveillance Study led by the University of Washington in Seattle, has also offered patients and doctors alike peace of mind concerning living with prostate cancer.
But as good as a 55% acceptance of active surveillance may sound, 94% of men with low-risk prostate cancer in Sweden choose this approach, Ola Bratt, a leading Swedish urologist, reported in a webinar that I moderated in late October. This can be explained at least in part by the differences in the two countries’ national health care programs.
In Sweden’s heavily tax-supported system, urologists (who are surgeons) are paid the same whether they perform surgery on a man with prostate cancer or follow him as he wends his way through active surveillance. In the U.S., with its mixture of private commercial insurance and government-run Medicare, urologists have strong incentives to perform procedures. The more prostatectomies they perform, the more income they generate.
Urologists affiliated with the U.S. Department of Veterans Affairs and with academic medical centers, however, don’t have incentives to operate or perform radiation therapy. The proportion of candidates who go on active surveillance in these centers is above national averages and can approach the rates in Sweden, researchers have told me.
But differences in health care financing alone may not explain the gap in acceptance rates for active surveillance. Klotz told me he believes “surgical cultures” — where surgeons practice and where they train — influence whether they favor treatment over active surveillance.
Differences in the two countries’ medicolegal systems may also help explain the different rates of active surveillance. U.S. surgeons face the risk of million-dollar lawsuits if they don’t closely adhere to guidelines for prostate cancer care from such organizations as the American Urological Association and the National Comprehensive Cancer Network. In Sweden? At worst, surgeons might get a slap on the wrist for not operating on a patient whose cancer became aggressive, Bratt, who heads Sweden’s prostate cancer guideline committee, told me.
I am now 74, and the small tumor that set me on this journey has not grown. In fact, I have been through six biopsies and two MRIs, and the cancer was only seen once. I have learned to coexist with my cancer, and may never need “definitive” treatment for it, though this may not be the case for all men who choose active surveillance.
As a medical journalist, I have often written about prostate cancer, the second most common cancer killer in men. But I never expected I’d confront that diagnosis personally. Being informed I had prostate cancer was an unsettling experience, especially coming out of the blue.
I am glad I sought a second opinion and grateful I was told about an option other than immediate treatment that might have reduced my quality of life. It has been a “journey” of education as I have met thousands of other men going through the same experience and learned more about this disease that affects one man in eight in this country. And I continue to celebrate active surveillance, the gift that keeps on giving.
Howard Wolinsky, a Chicago-based medical freelance writer, was the medical reporter for the Chicago Sun-Times for 25 years. He is the co-founder of Active Surveillance Patients International, a support and advocacy group for men on active surveillance, and co-founder of the weekly AnCan active surveillance virtual support group., and curator of The Active Surveillor newsletter.
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