From June 30 to July 5, we are republishing one of our most popular series of articles. Chicago-based journalist Howard Wolinsky shares his journey and decision-making since he was diagnosed with prostate cancer and decided to pursue active surveillance. This is the first article in that series.
When I was in my '30s, I worked as a medical writer at the Chicago Sun-Times. I occasionally wrote articles about the troublesome prostate gland.
Here's what I knew about the prostate:
- A normal healthy gland is about the size of a walnut.
- Older men often have enlarged prostates that cause them to wake up frequently at night to urinate. (I once overheard my father and father-in-law quietly discussing how their prostates kept them up at night.)
- Advanced prostate cancer could spread into the bones and cause unbearable pain.
- In most cases the disease grows slowly, which means men typically died with, but not from prostate cancer.
What did I know about my own prostate? Again, not much.
It's Not About Size
I thought prostate cancer was the concern of older men, not me.
When I was in my '50s, my family physician -- a woman -- performed a digital prostate exam. She informed me: "Your prostate is small, but just wait."
It's still small, but it turns out that size didn't matter for me.
I started taking PSA tests after than digital exam, and the results were in a safe range averaging 3.3. But 5 years ago, when I was 63, my PSA test set off alarms for my internist.
In February 2010, my PSA "accelerated" up to 3.95, uncomfortably close to a PSA of 4, an arbitrary line where patients are referred to the urologist. By June, the PSA had gone up to 4.3 and onto 4.7.
Not good.
But PSA is a mystery. Infections, sexual activity, benign prostatic hyperplasia and, of course, cancer can make it spike.
PSA is prostate specific; but it's not prostate cancer specific.
In 2008 I had taken a buyout from the Chicago Sun-Times. I became a freelance writer and and an adjunct professor at the Medill School of Journalism at Northwestern University in Chicago. I wasn't following medical news closely and didn't follow developments in prostate cancer.
Accelerating and Worrying
I had, however, read the 2010 novel The Terrorist by Peter Steiner in which the protagonist, a former CIA operative, lying low in a sleepy French village, was called back into service to track down Taliban and Al Qaeda sleeper cells. One problem: he had accelerating PSAs and was undergoing chemotherapy. He had to balance chemotherapy and doctor visits with going after the bad guys,
As I received my own PSA results, I fixated on the word "accelerating" and rising PSA levels seemed scarier than chasing down terrorists.
My internist, Marwan Baghdan, MD, referred me to Raj Patel, MD, a community urologist in the southern suburbs of Chicago, near my house.
I checked out the doctor. He trained at the University of Chicago with a urologist I knew well, Gerald Chodak, MD, a former professor of surgery at the University of Chicago, who I often had interviewed for prostate stories.
I contacted Chodak, who had retired from urology and but he was still involved as an educator. He created the first video prostate education website that contains over 100 free videos for the public on every aspect of prostate health and prostate disease, including cancer.
Chodak vouched for his former student. I made an appointment with Patel with the expectation that the accelerated PSA would be found to be a quirk and I'd walk out and pick up on my life and never think about my prostate again.
I couldn't have been more wrong. I didn't know it, but I was about to cross the Rubicon, entering the assembly line of prostate cancer care that will last the rest of my life.
Patel did a needle biopsy in his office.
During the procedure, I heard a sound like rubber bands being snapped in an intimate space. It actually was the sound of a biopsy gun being shot point blank into the gland to extract thin slices of tissue. The cores were sent to a pathologist who would hunt for abnormalities, including cancer.
After the procedure, Chodak asked me if Patel had used an anesthetic. He had indeed. "Good student," said Chodak in an email.
Overall, it wasn't a horrible experience. The real horror would come with the biopsy results.
The pathology lab reported my results showed some irregularities, but they were ambiguous. Patel sought a second opinion. He sent my slides to Johns Hopkins University prostate biopsy guru, Jonathan Epstein, MD, who reads 12,000 slides a year.
On June 21, 2010, Epstein delivered his verdict: one core was "highly atypical and suspicious for adenocarcinoma. There is insufficient cytologic and/or architectural atypic to establish a definitive diagnosis. A repeat biopsy is recommended."
Uncertainly boosts anxiety and leaves lingering questions.
Was it a fluke? Was infection causing my PSA to accelerate? Did I have cancer?
My PSA dropped to 3.5, but I proceeded with a follow-up biopsy in Patel's office in December 2010. I still thought I was getting a pass on cancer.
The "Call"
The phone call from Patel came on an evening when I was at home. My biopsy showed Gleason score 6 in just one of the 14 samples.
Oppenheimer Urologic Reference Laboratory found that a sample from the left apex had a "small focus of moderately differentiated adenocarcinoma." Prostate cancers are assigned Gleason scores from 2-10. Scores under 6 are less dangerous than scores of 7-10.
My wife Judi, and I went to see Patel to discuss options.
He first had us watch a video that explained treatment options: surgery, cryotherapy, and a couple of approaches using radiation.
I already done my homework and I had questions about the options he presented.
If you lunch with men of a certain age, it seems that conversations inevitably turn to prostate issues. I had heard from men who frankly shared with me that they had early prostate cancers and surgery caused severe side effects. They wore diapers to absorb the urine, sometimes for a year or more. Sexual function was a mess. A couple of these men described penile injections they gave themselves to enhance their erections.
The video did not mention an emerging option: active surveillance.
Active surveillance requires serial PSAs every 3 to 6 months combined with annual or biannual biopsies. If the cancer suddenly became aggressive, the intervals were such that the urologist could still intervene with surgery or radiation with very high cure rates.
I learned that active surveillance itself was in its early stages so there was not much research on its value. I would be a pioneer, but I was encouraged by what I read.
Laurence Klotz, MD, and colleagues in the Department of Urology, Sunnybrook Health Sciences Centre in Toronto, conducted a prospective, single-arm cohort study of 450 men undergoing active surveillance. The 10-year survival rate was 97.2%. Thirty percent of the group have been reclassified to a higher risk group and were eventually offered surgery or radiation. Of the 450 patients, 117 underwent radical treatments.
Chodak told me active surveillance was an option. He had warned in a telephone conversation we had before I saw Patel that medicine belatedly was realizing that patients like me with early cancer probably don't need surgery or other treatment.
"What people are finally recognizing is that a large fraction of men is getting a treatment that they probably don't need right away, maybe never," he said. "You are in that group. You have one out of fourteen biopsies showing a small fraction of cancer. At the age of 62, 35% of all men have that. And only 3% die of it. So the odds of you getting into trouble are maybe 1 out of 10 to 1 out of 15."
But "doing nothing" is a difficult concept for patients to accept. The Centers for Disease Control and Prevention notes that prostate cancer is the most common cancer in men, followed by lung and colorectal cancer. The American Cancer Society estimated there were 220,800 new cases of prostate cancer in 2015, with 27,540 deaths.
In 2010 only about 9% of men with confirmed early-stage prostate cancer opted for active surveillance.
Chodak said, "That percentage has been gradually increasing but is difficult for many men and their partners to accept."
Patel seemed to be steering me towards surgery. I asked him about active surveillance. He said the choice was mine.
It didn't sound as though my needs aligned with Patel's services.
Finding Another Option
No problem. I had heard there were at least two active surveillance programs in the Chicago area. I made an appointment with Scott Eggener, MD, who ran the active surveillance program at the University of Chicago Medical Center.
His was a reassuring voice at a time when I needed one. I heard that I had an early cancer, but I was feeling pressured to undergo surgery. Most men with the same "low" Gleason scores had undergone surgery for peace of mind.
The U of C pathologists looked at my slides and concluded that the diagnosis made by the lab was correct. Eggener said he had a group of 75 men in active surveillance. He said that about 5% of them a year decide to undergo more aggressive therapy.
I'm not a gambler. But my take-home message was that the odds were stacked in my favor, that chances were that my cancer would pose no more of threat at age 73 than it had at age 63.
My goal became to live with cancer so I opted for active surveillance program.
When I shared my decision with him, Chodak told me: "When it's my turn I hope I have what you have because it is as minimally life-threatening as you could possibly ask."
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Prostate Cancer: A Patient's Journey
