Two weeks had passed since I'd seen my doctor. The waiting sucked. When he finally called, I was at home in Needham reading. “There's a small problem,” he told me in a calm voice. The small problem was that I had cancer.
I had prepared myself for this. I'd read up on my options should the biopsy on my prostate come back positive. My most difficult decision, I assumed, would be whether to have surgery Â— the “gold standard” for treating the growing number of men like me, in their 40s and 50s, diagnosed with prostate cancer Â— or to choose a less invasive option that calls for monitoring the slow-growing cancer's status rather than immediately treating it.
In the end, I decided to have surgery. Once I did, I never imagined having it anywhere but Boston. We live, after all, in the medical capital of the world.
But then I did my research.
Ultimately, I had the surgery not in Boston, but in Baltimore. I ran from Boston's vaunted medical establishment instead of toward it. Why? Because one of the potential outcomes of prostate surgery men seek most to avoid is impotence. And my research found an alarming truth, a little-noticed crack in Boston's cast-iron reputation as a medical mecca: Among men who undergo prostate surgery, studies show that those who have the procedure performed in Boston are more likely to end up impotent.
Being diagnosed with prostate cancer wasn't an enormous shock to me. The disease afflicts nearly 200,000 men each year in this country. One in six men will be diagnosed with prostate cancer, compared with one in eight women who develop breast cancer. Prostate cancer kills more than 30,000 men every year.
In the few weeks after my diagnosis in September 2001, I read a ton. Aside from the names of the celebrities who shared my problem Â— Bob Dole, Rudy Giuliani, Charlton Heston, Norman Schwarzkopf Â— the words that jumped out from the treatment descriptions were “impotence” and “incontinence.” I was scared of dying from the cancer, but just as terrified of living without the ability to have sex or control my bladder.
The first clue I had that there might be a problem in Boston came in a book, The Prostate Cancer Protection Plan, by TV doctor Bob Arnot. In one chapter, Arnot recalled a friend “who had had surgery at a top Harvard hospital but still remained incontinent and impotent a year later.”
I dismissed this observation as a fluke and was encouraged by a more upbeat assessment about surgical treatment from a Johns Hopkins University urologist. From Dr. Patrick Walsh's Guide to Surviving Prostate Cancer I learned that Walsh in 1982 devised the delicate and now widely used radical “nerve-sparing” prostatectomy surgery, for removing cancerous prostates, whereby the nerves that control sexual function are more likely to be left intact. Among one group of 64 Johns Hopkins patients who were sampled, only 10 percent of men in their 50s turned out impotent a full 18 months after surgery. Cure rates approached 95 percent. Encouraging odds.
I expected to hear similar statistics when my wife and I sat down with my Boston urologist (who has requested that I not use his name). He performs 75 to 100 prostate-cancer surgeries a year. Treatment options like radiation seed implants, beam radiation, or surgery gave me an 85 percent or better chance of a cure, he told me. As for that nerve-sparing surgery I'd read about, my doctor said it carried a high risk of impotence Â— about 50 percent.
“There may be people who say they do better,” he said, “but it's hard to guarantee anything better than a 50 percent chance.”
I was baffled. How could Walsh promise a 90 percent success rate but my doctor only 50 percent from the same procedure? The best doctors get the best results, he essentially told me. And it seemed to me that those doctors were not in Boston.
As grateful as I was for such an honest answer, I left feeling numb.
The next day I called Walsh at Johns Hopkins. I didn't expect to get an appointment, but I hoped he could refer me to someone in Boston who could match his results. Sure enough, he wasn't taking on new patients, though he did have urologists he recommended. The closest, however, were in New York City. I made an appointment with one at New York University Medical Center who had worked with Walsh.
Meantime, I dug deeper into the debate. I read about a 1997 study of Boston prostate-cancer-surgery patients reported in the Journal of the National Cancer Institute. The study followed 49 men who had prostate-cancer surgery here. The results: Depending on the type of surgery, 14 to 50 percent were left incontinent and 60 to 80 percent impotent one year after surgery. A 1998 study in the Journal of Clinical Oncology looked at 106 nerve-sparing surgery patients in Boston-area hospitals and reported minor incontinence in 35 percent and “incomplete erections” in an astounding 93 percent at that one-year benchmark.
I shuddered, but kept reading and finally hit better results Â— outside Boston.
A 2001 article in the journal Urology assessed 50 nerve-sparing surgery patients at Johns Hopkins Hospital, the Mayo Clinic, New York University Medical Center, and other places. Nearly three-quarters had recovered sexual function at 12 months. Equally interesting, the article noted, “A number of centers have met with far less success, reporting potency rates of only 10 to 30 percent.” The footnote led straight back to that 1997 Boston study I had read.
Now officially alarmed, I sat in with a prostate-cancer support group at Beth Israel Deaconess Medical Center. On a cold and drizzly evening in a fluorescent-lit hospital basement conference room, I joined 20 ordinary-looking guys in their 40s, 50s, 60s, and 70s, most of whom had had surgery within the last two years.
One athletic-looking man in his 40s said he was six months out of surgery. “I still haven't been able to have sex. I've tried Viagra and suppositories. I have the needle injections, which should work, but I haven't been able to get myself to inject my penis.”
A man in his 50s went next. “Nothing has worked for me, either,” he said sadly.
Then it was my turn. “I've recently been diagnosed,” I started. “I'm leaning toward surgery, but one of my big concerns is the impotency issue.” I went on to tell them what I'd read about Walsh and his claim of a 90 percent impotence-free cure rate.
“It's lies,” one man interrupted.
“Ask him for the names of patients who don't have a problem,” said another. “He won't give you the names. He'll cite 'confidentiality.'”
Some support group.
“Has anyone told you that after surgery your penis will be shorter?” one man asked.
I assumed he was joking, trying to break the tension with some prostate humor, until another guy piped in, “Mine definitely looks different.”
When I spoke later with Stan Klein, an organizer of the group and himself a prostate-cancer-surgery survivor, I realized the meeting was no aberration. The discouraging estimates of impotence from my urologist and the Boston research studies were actually optimistic compared to what he had heard. “I've met with a thousand men who've had surgery,” he said, “and 95 percent are impotent.”
Why did he think things were so much worse than the literature suggests? “If the doctors told men how bad it is,” he said, “no one would have the surgery.”
By mid-November of 2002, I couldn't wait to leave Boston for my visit with the NYU urologist. The doctor, Herbert Lepor, showed me a scrapbook full of cheerful photos of his patients Â— playing tennis, tending their gardens, climbing mountains, all within a few weeks after surgery. That's fine and good, I said, but what about the surgical outcomes? “There's a 5 percent chance you'll be incontinent and a 25 percent chance you'll be impotent,” he said.
Big improvement. Still, I was skeptical. I gave Walsh another try, pleading with an assistant for an appointment. If I wanted, she finally said, I could write him a detailed letter. So I did, summarizing my clinical data and adding a sentence of concern about having the surgery in Boston.
One week later Walsh's office called, and two weeks after that I was bent over in an examination room at Johns Hopkins Hospital in Baltimore. Walsh, a slight man in his 60s, was straight-talking and witty, which was nice, considering my compromised position. He said he personally would do my surgery. He repeated the figures from his book: The chance of a cure was 95 percent. And the chance of full sexual function after surgery for a man my age was 90 percent.
I was sold. The chances of beating the cancer seemed equal everywhere. The postsurgery side effects did not.
One year ago this month Â— February 19, 2002 Â— I was wheeled into a cold, bright operating room at Johns Hopkins Hospital. I hopped onto an operating table and felt needles jabbing my spine. That's the last thing I remember until I was wheeled out two hours later.
My recovery was quick. I flew back to Boston four days after surgery. My urinary function returned to normal in a month, and two months after that, my sexual function had begun to return. Best of all, my penis hasn't shrunk Â— that's what my wife tells me, anyway.
I can't explain why Boston doctors can't match the results of Walsh, and he collegially declines to speculate. For their part, Boston doctors are quick to defend themselves against the inference that this is a second-class center for prostate-cancer surgery. There's also a taint of rivalry. Dr. Ricardo Munarriz, assistant professor of urology at Boston University School of Medicine's Institute for Sexual Medicine and an expert in treating sexual dysfunction, joked to a group of about 50 men attending a prostate-cancer symposium last year that “no one is impotent from Hopkins” postsurgery. “We see so many patients who are impotent after surgery,” he said. “It is very difficult for surgeons to admit they are wrong.”
Dr. Jerome Richie, chief of urology at Brigham and Women's Hospital and one of the authors of the 1997 and 1998 Boston studies, attributes the high percentage of side effects from surgery in those studies to the fact that the patients were treated in “more community-based than academic-based” hospitals. He says the 175 patients he personally operates on each year have incontinency rates of only 5 percent and impotency rates of 20 to 30 percent one year after surgery.
The numbers can be dizzying, especially with so many things to weigh: stage of cancer, physical condition, age, insurance. I'll never know if the outcome in my case would have been the same in Boston as in Baltimore.
In the end, I had to go to the surgeons getting the best results.
They weren't in Boston.