Article from Active Surveillance Patients International: Questioning (Medical) Authority: Our path to embracing active surveillance

Questioning (Medical) Authority: Our path to embracing active surveillance

By Howard Wolinsky and Mark Lichty

Our Baby Boom generation was raised to believe in science. We lived in the new age of nuclear science and genetics. The polio vaccine, heart transplantation, effective treatment of AIDS, and the seemingly overnight creation of the vaccine for COVID-19 are part of these days of miracles and wonders.

We believed in the potential of science for health and good. At the same time, we from a generation of protestors and resisters. We did more than wear T-shirts or buttons that said “Question Authority.” We lived and breathed this creed, even as we matured.

As a draft resister and opponent of the Vietnam war, Howard spent two years on bond for draft evasion. He has spent his 50-year career as a journalist exposing questionable practices and wrongdoing in the medical world. Mark has dedicated the last 50 years of his life to social justice, including producing films like Groundswell Rising about the anti-fracking movement.

Question authority

Three years ago, never having abandoned the creed of questioning authority, we joined forces to explore a problem that impacts hundreds of thousands of men in our age bracket worldwide — low-risk prostate cancer. We both were diagnosed with low-risk prostate cancer: Mark, 16 years ago at age 55, and Howard,10 years ago at age 63. Urologists advised us both to undergo radical prostatectomies, which we found would put us at risk of life-altering side effects.

We both said no to radical prostatectomies.

We both questioned medical authority, having done our own research, and having sought second opinions.

Some people think the choice is obvious, that men in our situation had a choice between saving their lives by undergoing radical surgery vs. the seemingly frivolous choice of preserving the quality of life by avoiding sexual impotence and urinary incontinence,

But it’s not that easy.

Survival rates for low-risk PCa

Research shows that the survival rate for men with low-risk prostate cancer is the same whether they choose surgery, radiation therapy, or active surveillance (AS).

AS is a protocol in which the patient is closely monitored with blood tests for the level of prostate-specific antigen tests, biopsies, digital rectal exams, and mpMRI scans. It is recommended for virtually all men with low-risk Gleason 3+3=6 diagnoses and some men with “favorable” intermediate-risk Gleason 4+3=7 diagnoses.

In 10 years, 99 out of 100 men with low-risk prostate cancer will be alive. And it doesn’t matter which path the men choose, according to the Institute for Quality and Efficiency in Health Care. (https://bit.ly/2XqHeG2)

Active surveillance arrives

Even though survival rates with surgery or radiation are virtually the same for low-risk prostate cancer, AS has been a hard sell to men and their worried partners/spouses. Many men have considered radical — and we do mean radical — treatment as a no-brainer even for cancer that most doctors now think will never threaten the men’s lives.

In fact, some leading physicians, including Dr. Laurence Klotz, one of the pioneering urologists who developed AS in the mid-to-late 1990s, want low- and very low-risk prostate cancer reclassified as noncancerous.

As with any new approach in medicine, Drs. Klotz, of the University of Toronto, Peter Carroll, of UCSF, and H. Ballentine Carter, of Johns Hopkins, faced an uphill battle to win acceptance of a radical new idea that went up against their colleagues’ accepted knowledge and practice in urology. The idea of coexisting with cancer seemed crazy to most urologists and patients 25 years ago — yet the research showed most men with low-risk prostate cancer could live with their cancers safely and defer treatment for a few years or the rest of their lives.

True believers amongst urologists held that radical prostatectomies were the gold standard for all men diagnosed with prostate cancer. Most men sheepishly went along with that thinking.

The urology establishment felt that radical prostatectomies were the right thing to do to save men’s lives despite the small risks of death and infection, including sepsis, from surgery. And there was the money thing. The radical prostatectomy was a bread-and-butter procedure for many urologists and their incomes. Urologists clearly had incentives to perform surgery. Forward thinking doctors like Mark Scholz early on saw the epidemic of over treatment, and led the way encouraging AS where appropriate. (see www.pcri.org)

Money aside, there is the law of the hammer. Psychologist Abraham Maslow said in 1966: “I suppose it is tempting, if the only tool you have is a hammer, to treat everything as if it were a nail.” Thus, if urologists were trained to perform radical prostatectomies, that is the hammer they were likely to use.

Many Patients were reluctant to follow the AS path as well. Men and their partners thought that the RP was a safe bet. The idea of coexisting with cancer seemed foreign and dangerous. Why risk it?

Resisting the knife

Only a handful of men chose AS when Mark was diagnosed in 2005. When Howard was diagnosed in 2010, perhaps 6%-10% of men with low-risk prostate cancer opted for AS.

Many of our friends and relatives thought we were crazy to follow the then road not taken. That’s a typical reaction to new ideas. In Mark’s case, five medical professionals, including his wife Wendy, a nurse practitioner, felt he should have a radical prostatectomy. In navigating one’s own path, one may find many obstacles and voices of opposition.

Howard was lucky. His wife Judi backed the idea of AS.

Stand by your instincts. It is your body.

The path to acceptance of new ideas in medicine is steep and littered with opposing voices and “accepted wisdom.” (https://www.embopress.org/doi/full/10.1038/embor.2008.65)

Ignaz Semmelweis, a Hungarian physician-scientist, in the mid-1800s, wondered why so many women died in a maternity ward in Vienna. He proved it was because surgeons did not wash their hands and instruments before operations. His ideas were ridiculed and were not accepted until long after his death.

Pioneers

We were pioneers, as were some doctors. Time has proven us correct — that AS is a safe and effective method for managing low-risk prostate cancer. Some men eventually may change their minds about remaining on AS because of overwhelming anxiety from living with cancer. Others may have been diagnosed with more aggressive cancer as the years go on.

But AS affords them time to defer surgery. Many of us will spend the rest of our lives without undergoing radical surgery.

We formed Active Surveillance Patients International in 2017, along with Thrainn Thorvaldsson and Gene Slattery, with the idea of promoting AS through education and advocacy. We also felt we had a common cause with men in other countries with low-risk prostate cancer and “favorable” intermediate prostate cancer.

We have questioned authority on various practices in the field, including the use of potentially risky gadolinium contrast agents. Some critics believe the agents are retained in the body and cause damage by crossing the blood-brain barrier. Some radiologists say no contrast actually is needed for mpMRIs on men with low-risk disease.

We plan to continue to question dubious, unproven, and potentially risky practices that affect our fellow prostate cancer patients on AS.

Active surveillance may have been considered radical 25 years, even five years ago. However, the idea has moved along the path of acceptance and now is in the quiver of the majority of urologists and their patients. At this time, about as many low-risk men, and maybe more, go on active surveillance as they choose aggressive interventions.

Today’s better-educated patients ask about AS and seek second opinions about their test results and treatment options. Meanwhile, a new generation of urologists has come along who have seen and accepted the merit of AS to serve their patients’ interests. Some older urologists have signed on to AS as well.

AS also has made gains one retirement and one death at a time of the older generation of urologists. Along these lines, German physicist Max Planck once observed, “[A] new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.”

The numbers game

Consider the numbers for prostate cancer: Nearly 200,000 American men a year are diagnosed with all levels of prostate cancer. About half have low-risk prostate cancer.

Ten years ago, of these 100,000 or so low-risk men, only 6,000 to 10,000 went on AS. The rest, as many as 90,000, mainly chose potentially life-altering surgery.

Today, overall, 50%-60% of American men with low-risk prostate cancer opt for active surveillance. As many as 60,000 men with low-risk prostate cancer per year opt for AS.

And in some urology practices, 95% of men with very-low risk prostate cancer, with a low volume of prostate cancer, and 75% with low-risk disease, go on AS, according to Scott Eggener, MD, of the University of Chicago, who is leading the effort to redefine Gleason 6 as noncancerous.

This is a huge change nationally, but still below the 80% acceptance of AS in Sweden.

The history of science is replete with theories that only became accepted by the scientific community after a long and protracted uphill battle.

AS has been a rapid evolution in medical practice. There has been a sea change of thought and practice in a traditionally hidebound, slow-changing field. AS has changed the lives of tens of thousands of men for the better.

But reaching the 50% mark in the U.S. means the glass is half full and half empty. There’s a way to go with acceptance.

Men with low-risk prostate cancer have benefited from active surveillance thanks to a handful of pioneering doctors and patients who questioned authority.

We know of prostate cancer patients who have just deferred to their doctors without questioning their authority. Many have painful regrets—some contemplated suicide.

We ought to choose empowerment and take charge of the decisions we make, and live without regret.

It is gratifying to see how the patients who may have been considered radical in the past, and physicians who also may walk outside of the mainstream, are uniting in their common efforts to serve men and do no harm. The urologists and patients navigating these new pathways push science, maybe even drag science along. But the result is patients benefit, and their quality of life is preserved.

You might also find this column on Gleason 6 of interest: https://www.medpagetoday.com/special-reports/apatientsjourney/90601

Howard Wolinsky (howard.wolinsky@gmail.com) is a Chicago-based author and medical journalist. He is a co-founder of ASPI and serves as a moderator for the active surveillance virtual support group for AnCan/UsToo (https://ancan.org/prostate-cancer/). Howard twice has been nominated for the Pulitzer Prize. Howard and his wife Judi and their two sons live outside Chicago. His new book is “Contain and Eliminate: The American Medical Association’s Conspiracy to Destroy Chiropractic.” More information available at Containandeliminate.com.

Mark Lichty (mlichty@aspatients.org), Chairman of the Board at ASPI. Due to the tragic overtreatment of his father’s prostate cancer, he was inspired to explore the uncertain terrain of what was then called watchful waiting. He hopes to inspire men to take charge of their AS journey. In his career, Mark has been an attorney, owned a metal fabricating firm, and most recently produced Groundswell Rising, a film on the anti-fracking movement. Please join us at www.aspatients.org