Evading the invaders
On Dec. 4, 2010, a urologist in Chicago diagnosed me with me a single core of low-grade Gleason 6 prostate “cancer.” He urged me to undergo a “cure,” a radical prostatectomy the next week. He had a vacancy in his OR and was raring to go to town.
Like most urologists at that time, Dr. RP (his actual initials) didn’t support active surveillance. I caught him off guard when I broached the topic. “I don’t support that modality,” he told me with all the authority he could muster.
The same day, I wrote an email to my cousin Maxim Schrogin in Berkeley, California, who had low-risk prostate cancer and was on AS. In 2010, AS was largely ignored and primarily recommended by urologists in academic practices.
Maxim seemingly was taking a risk: His dad, my father’s first cousin, had died from advanced prostate cancer.
On December 5, 2010, Maxim emailed me: “I have lots of advice.
“First, be sure to buy the book: ‘The Invasion of the Prostate Snatchers’ before you undertake any ‘procedure.’ It turns out that my cancer is slow-growing so there’s no rush. You should ask your doctor, but get lots of opinions.”
Right on, Maxim. I was on it. Within minutes, I bought and received a copy of the book on Kindle.
I had already done my homework and arranged to see on Dec. 15 Scott Eggener, MD, an up-and-coming urologist at the University of Chicago and one of the leading AS advocates in the world.
Meanwhile, I devoured the “The Invasion of the Prostate Snatchers,” by Ralph Blum, a professional writer and a prostate cancer patient, and LA-based Mark Scholz, MD, a rare medical oncologist who took an interest in prostate cancer and has remained a very public proponent for active surveillance. [Medical oncologists typically see patients with more advanced prostate cancer.]
The book, first published in August 2010, was a bible for the few patients like me at the time who wanted to avoid surgery and radiation and their side effects, including impotence and incontinence.
Things have changed in the ensuing years, as research has supported AS and there has unfolded a slow process of acceptance of the counterintuitive approach of AS—living with cancer— by patients and doctors alike.
Fortunately, a new edition of the “Prostate Snatchers” came out in Kindle and print editions on August 31, 2021 covering new developments in the field.
The co-authors offer a patient’s firsthand experience intermixed with the insights of a medical expert in alternating chapters. “The information Ralph and I assembled amounts to a road map for safe passage through this treacherous medical terrain,” Scholz said in describing the book.
In the early days of my diagnosis, my wife Judi, cousin Maxim and authors Ralph and Mark served as my AS support group when there wasn’t any other support. I wouldn’t meet another patient on AS for seven years.
Blum and Scholz helped me find and maintain courage as I followed the unbeaten path–active surveillance. Many people I knew considered me crazy and downright foolhardy to opt for AS when prostatectomy and radiation ruled.
Typical response: What? You have cancer, and you’re not treating it? You’re killing yourself.
A surgeon told Blum at one point: “Without surgery, you’ll be dead in two years.” I had a similar response from a world-famous urologist. (He subsequently apologized to me and said he had made a mistake in my case.)
(Blum did die. But not as the frantic urologist had forecasted. The author lived with his cancer for 20 years. He eventually left AS. In 2013, three years after the book came out, he underwent IMRT (intensity-modulated radiation therapy). He never was treated for prostate cancer again. He died at age 84 in 2016 from causes unrelated to prostate cancer.)
Scholz and Blum recommended going slow. After all, prostate cancer is slow-growing, especially in patients with low-risk Gleason 6 lesions that many doctors don’t even consider to be cancer.
The book is chock full of pointers we need to learn and follow as we meander down the AS road.
PSA? That’s the prostate-specific antigen blood test for levels of a molecule produced in the prostate, the first sign that something may be amiss.
Scholz weighed in: “A PSA is considered a ‘cancer test.’ One savvy patient’s advice is to think of PSA as a nonspecific indicator, like the ‘check engine’ light on your dashboard. An elevated PSA may be due to harmless inflammation, recent sexual activity or even a laboratory error. The first step toward investigating the cause of a high PSA is to repeat the test. If the PSA remains high, the next item to consider is that the prostate may be enlarged (BPH).”
What next if the high PSA persists? These days, think MRI and targeted biopsy.
Back in 2010, the recommendation generally was to undergo a biopsy. But the rules are changing with greater acceptance of multiparametric MRI as a next step followed by a targeted biopsy if suspicious lesions are found.
Scholz, long a critic of the blind biopsy, wrote: “When your PSA is elevated, rather than seeing a urologist to undergo a 12-core random biopsy, the industry standard, ask your family doctor about doing a prostate scan with a 3-Tesla multiparametric MRI. Although I am absolutely in favor of doing a targeted biopsy when it is appropriate, one of the reasons I agreed to write this book with Ralph was my concern about the vast number of random biopsies performed—not to mention the number of unnecessary surgeries that follow.”
(I agree with the advice overall. I am not a doctor, of course, but I would challenge the part about a 3-Tesla being the only choice. Researchers at the National Cancer Institute recently told me that some 1.5-Tesla machines do fine, and they use both types at NCI. This discussion is beyond the scope of this review. But ask your urologist and even your radiologist, if he or she will talk to you, about the effectiveness of the machine you’ll be scanned in.)
I was disappointed that “Snatchers” does not get into the debate over the pros and cons of transperineal biopsies vs. transrectal biopsies in preventing sepsis and other infections. Many doctors still are confident that they can use transrectal biopsies to reach anywhere in the prostate that cancer may be hiding and also that they can avoid sepsis.
Scholz and Blum’s book delivers a wake-up call to patients like me with low-risk prostate cancer–that the invading urologists were snatching our prostates for an indolent cancer that most of us could live with and would never die from.
A lot has changed since the book was first published in 2010. Only 6% of us with low-risk prostate cancer opted for AS in 2010. Twelve years later, we make up the majority of U.S. patients with low-risk disease (60% and growing of eligible low-risk candidates). 90%+ of candidates go on AS in some parts of the world and even some places in the U.S.
And the AS approach these days offers new tools, including multiparametric MRIs, targeted biopsies, and genetic and genomic testing. Scholz discusses the new PSMA (Prostate-Specific Membrane Antigen) PET scan to find even the tiniest sliver of prostate cancer though it is not recommended for patients on AS.
Blum and Scholz urge patients not to freak out when first confronted with the diagnosis: “Now factor in your personal shock and horror, the disorienting realization that you’ve just been told you have cancer. You have just received what is possibly the worst news of your life. The psychological impact of a cancer diagnosis is overwhelming. As an uninformed layperson, you reckon demise is imminent. All of a sudden, you’re on death row.”
The title “Invasion of the Prostate Snatchers” is a take-off on the 1950s sci-fi novel and subsequent sci-fi/horror film treatments, “The Invasion of the Body Snatchers.”
The premise of the Body Snatchers is that aliens invade Earth and take over human bodies while they sleep.
It is the same sort of story for patients with low-risk to favorable intermediate-risk prostate cancer. Urologists surgically remove their prostates while their patients are asleep—from general anesthesia. This scenario, from my point of view, was not sci-fi–but does fit the horror genre, with so many patients experiencing incontinence and erectile disorders. Blum and Scholtz cover this well.
Blum described the urologists’ modus operandi: “Here’s how it usually goes: When your family doctor tells you that your PSA is above normal, or finds something ‘suspicious’ while doing a DRE [Digital Rectal Exam], he will refer you to a urologist, who will—nineteen times out of twenty—perform a 12-core biopsy to determine whether the suspicious something is cancer. If cancer is confirmed, provided it is still contained within the prostate gland, and provided there is no medical reason surgery is contraindicated, the urologist will almost certainly recommend it. What the average guy—myself included—doesn’t realize until that moment is that, since the urologist is actually a surgeon, it’s hardly surprising that his treatment of choice would be surgery.”
This has changed. Many, maybe most, urologists, favor AS these days.
I had to bring up the idea of AS to my first urologist, who shot it down. I got a second opinion from Eggener, who declared me “the poster child of AS” and handed me copies of studies by Laurence Klotz, MD, who named and pioneered AS. I was sold by Klotz’s evidence that men on AS lived as long as those who underwent surgery or radiation.
My conclusion: Why undergo active treatment?
As his PSA rose, Blum traveled to Amsterdam to take advantage of a technology to rule out cancer spread. The authors urge patients to travel to get the best care. This can be to other countries or elsewhere in the United States, for example, to find an expert at reading prostate MRIs. Not everyone can afford this.
Scholz, co-founder of the Prostate Cancer Research Institute, a patient-oriented group to educate men on prostate cancer, wrote that these days doctors must present all options to prostate cancer patients: “The law states that you have to present all viable treatment options. So I quote the stats on radiation, cryosurgery, and even explain about treatments like proton beam therapy. I also maintain a list of experts in the field to whom I can refer patients for second and third opinions. I spend a lot of time giving information and advice.
“Do [patients] follow your advice? That’s the problem. Once they hear the word ‘cancer,’ most of what I tell them after that won’t even be absorbed. A lot of men will ask, ‘What do you think, Doc? What would you do?’ The average guy wants me to make the decision for him.”
The authors advise newly diagnosed patients to slow down, take a breath and embark on further research–and don’t just go to see another urologist but also a radiation oncologist and, if possible, a medical oncologist. Get a second or third opinion. I’ll add that in most cases, you ought to see doctors in other practice groups to avoid any pressure and bias.
Scholz stressed that this is a slow-growing cancer. Don’t get rushed into a potentially life-altering treatment.
Blum heard alarm bells many times on his cancer journey. He put off a biopsy for nine years. He even made last-minute decisions to forgo treatment.
Scholz long has been a critic of the random biopsy, which urologists used to consider their “gold standard” and Scholz considered no better than a coin flip, a shot in the dark.
He added this: “Studies show that random biopsy misses High-Risk cancer 33% of the time. Third, there is a significant risk of impotence. The journal Urology reported a 41% incidence of ED in a study of ninety-seven men who filled out sexual questionnaires a month after biopsy. Six months later, 15% had persistent ED.”
The revised edition of the “Snatchers” advocates the MRI-first approach followed by a targeted biopsy should suspicious lesions be found.
The “C-word” surely focuses our attention when we are first diagnosed. But Scholz highlights in the book and in his educational programming at PCRI.org that heart disease is the far bigger threat for those of us with low-risk Gleason 6. “Low-Risk variants … are practically never fatal … The risk of a heart attack in the average man over age fifty is much greater than the risk of dying from early-stage prostate cancer,” he wrote.
Scholz tells patients who need to be treated that radiation therapy has improved over the years and is far more precise. If a man chooses to be treated, he recommends radiation over surgery: “Patients need to understand that modern radiation is both less toxic and more effective than surgery.”
However, he pointed out that radiation therapists have a strange conflict of interest: “..many radiation therapists won’t say anything negative about surgery for fear that such comments will get back to the referring urologist. Far too often, I see radiation therapists recommending surgery even though they know full well that radiation has comparable if not superior cure rates.”
The radiation oncologists keep their opinions to themselves. They don’t want to lose referrals from their urology colleagues. “Radiation therapists are willing to wait for the referral of an older patient who the surgeon deems to be a poor surgical candidate,” Scholz said.
Doctors who do this ignore their first allegiance is to their patients, not to their pocketbooks and golfing buddies.
Scholz said men on AS need to look at their diets and exercise programs.
He wrote: “Bottom line, an optimal diet for prostate cancer patients is low in animal protein and consists primarily of complex carbohydrates, that is, carbohydrates in their natural state, such as whole grains and vegetables.”
He also emphasized the importance of exercise. New research has shown that high-intensity interval training suppresses the growth of low-risk Gleason 6 cancer.
Scholz said: “Fitness is crucial to overall health, much more than people realize. First of all, exercise reduces heart attacks and cancer. Second, exercise slows the inexorable aging process. After age sixty, we start losing 1% of our muscle every year, and this leads to progressively worse fatigue. Forgoing exercise is a huge mistake. As my trainer Anton says, ‘Sitting is the new smoking.’”
My cousin Maxim pretty much doesn’t think about his cancer much these days. He’s on a different brand of AS–autopilot surveillance. I took the activist and advocate route myself.
When he and I were diagnosed in 2010, we were pretty much on our own. In 2017, I met Thrainn Thorvaldson, Mark Lichty, and Gene Slattery, and decided to start an international group, ASPI, to advocate for patients on AS. This led in 2019 to the first weekly virtual support group for men on AS on the AnCan platform founded by Rick Davis.
If you are in the twilight zone with a rising PSA and awaiting an MRI or biopsy, or if you are newly diagnosed with Gleason 6 or favorable Gleason 3+4=7 lesions, get the new edition of “Invasion of the Prostate Snatchers” by Scholz and Blum. The authors provide insights and data, which can help you navigate these strange waters and help you make some tough decisions that could impact the quality of your life.
Also, as the authors and I suggest, consider going to a support group, especially one focused on AS, where you can get information from others who have firsthand experience.
“Invasion of the Prostate Snatchers” also is a worthwhile read for those of us who have been on AS for a while to remind of us of why we went on AS to begin with and help us stay on this path if it still makes sense.
Scholz observed in the book: “I believe that when the final chapter of this disease is written, it will prove that never in the history of oncology will so many men have been so over-treated for one disease.” Amen.
Howard Wolinsky is the founder and editor of TheActiveSurveillor.com. He is a veteran medical journalist, twice nominated for the Pulitzer Prize for his exposes on the American Medical Association. The Association of Health Care Journalists, the National Press Club, Associated Press Managing Editors, the Chicago Newspaper Guild, the Greater Orlando Press Club, the American Public Health Association, the American Heart Association, the American Bar Association, and many others have honored his writing.
He recently completed a writing fellowship at the National Cancer Institute and also was Mike Wallace Fellow at the University of Michigan. (Go Blue.) He is attending, PATIENTS Professor Academy at the University of Maryland at Baltimore, learning about patient-centered outcomes research.
Low-risk prostate cancer is his beat these days.