Since you’re wondering, no, the score has nothing to do with the larger-than-life star of The Honeymooners. The Gleason is named for Donald Gleason, MD, PhD, the former chief pathologist at the Minneapolis Veterans Affairs Medical Center, where he developed the scoring system with other researchers in the 1960s and continued to refine it through the 1980s. When I visited Dr. Chu at Roswell Park, he showed me a slide from an original drawing that Dr. Gleason had made of cancers 1 through 5. It was riveting. The American Urological Association should make a T-shirt showing it. It looked like something that M. C. Escher would’ve produced after spending a couple of weeks as a Grateful Dead roadie. I studied my Gleason 3 for a long time; it was just starting to break out into a psychedelic pattern.
My biopsy also revealed cancer in 2 of 12 cores, one with 20 percent cancer, one with 5 percent. Not a large amount of cancer, but not negligible either.
The MRI and bone scan both showed no evidence that the cancer had spread. That was expected, but good news nevertheless.
All in all, if you’re going to have cancer, I didn’t have much to complain about. I had low-grade, localized prostate cancer.
Up to that point, my wife and I had not researched the subject all that deeply. Or, to clarify: I hadn’t. Donna had done some homework, finding out the basics on prostatectomy (removal of the prostate and, thus, the cancer); radiation (from both internal and external sources, including brachytherapy, which means implanting cancer-fighting radioactive seeds in the prostate); and “watchful waiting,” or, under its contemporary name, active surveillance. We were both intrigued by the latter. Maybe I wouldn’t need an operation or radiation.
Then again, lurking in the back of my mind was the death from prostate cancer of my friend George Yasso. Cold logic demands that medical decisions be made on a personal basis, not on what happened to someone else. But it’s human nature to consider what happened to someone else, especially someone close to you.
We also knew, in a general sense, the possible consequences of surgery. There could be impotence, temporary or permanent, as well as urinary-control issues, temporary or permanent. The former was more likely than the latter, but the research seemed to say there is no precise pre-intervention way to predict how either is going to come out. The surgeon can make an educated guess afterward based on how many nerves had to be cut during surgery, but he or she can’t be absolutely sure how that will affect future sexual performance or urinary function.
There is in the prostate-discussion ether the idea that patients are not given enough information about these repercussions, i.e., that many men choose to have surgery or radiation and only later find out that they may never again have an erection. I’ve heard this from prostate cancer sufferers and read it on chat forums, and certainly the USPSTF believes that urologists are not always forthcoming about what surgery or radiation might do.
Frankly, I struggle to wrap my mind around that. There are good and bad urologists and good and bad communicators, no doubt about that, but does anyone these days go to a hospital for surgery or submit to more than a month of radiation therapy without glancing at the Internet? Most people check Yelp before shopping for applesauce.
Twenty years ago, even 10 years ago, information was harder to come by, and doctors dealt with mostly undereducated patients. But if you spend 30 seconds researching prostate cancer you will find “erectile dysfunction” and “incontinence” are the major connectives to intervention. In essence, they are the whole ball game. In pondering whether to have surgical or radiological intervention, a major part of the decision involves choosing whether you want to open Door Number 1 (ED), Door Number 2 (incontinence), or, perhaps, have both of them slam you in the face.
KEITH HAD LET US KNOW in his initial phone call that a treatment decision would not have to be made exigently or under duress. He had said that I should decide by early the next year. It was now October 6, about a month after my biopsy.
We brought up active surveillance with the resident and he seemed receptive to it. But he wasn’t the boss.
Then Keith came in. One of life’s adjustments—and maybe this is just for males—is reconciling an early friendship with an adult one. To an extent, you tend to eternally see the doctor who stands before you with a cancer report as the kid you got hammered with in college. It’s easy to assess maturation and professional competence in yourself—or at least to imagine it—but it’s sometimes difficult to do the same for old friends.
But that wasn’t the case with Keith. He seemed adult and competent even when he was 18 (though, to be clear, I wouldn’t have wanted him to do a DRE on me back in 1969). So there would be no mistrust of what he had to say. He was clearly my doctor, not my friend.
We shook hands, he pecked Donna on the cheek, and he got down to business.
“You have three basic courses of treatment,” he began, pulling out a legal pad. “First, there is a way to treat this with what’s called ‘watchful waiting’ or ‘active surveillance.’ ”
My wife and I exchanged knowing glances. This seemed to be the way to go. No surgery, no radiation, no—
“So I would take that off the table,” said Keith. I still have a mental picture of him literally crossing out the words “active surveillance.”
Keith went on to discuss the other two possibilities—prostatectomy and radiation. He didn’t advocate one over the other but allowed that he was a urologist, not a radiologist, so his inclination was for surgical intervention. He had performed many of those operations himself. “But I would recommend setting up an appointment with our radiology department so they can discuss those options,” he said.
Keith also emphasized that, if I chose surgery, he would not do it. Unless a patient insisted otherwise, Keith and most other urologists in the University of Pennsylvania Health System refer cases like mine to Dr. David Lee, who performs prostatectomies with the da Vinci robot, a procedure that started to gain hold about 10 years ago. Keith has no experience with the robot; he trained using the original “open” method, which involves getting at the prostate via a “radical retropubic” incision down the lower abdomen or a “radical perineal” incision in the perineum, which is the area between the anus and the scrotum.
Before we left, I presented Keith with the question most commonly asked of urologists who are delivering cancer news.
“If I were your father instead of a friend, Keith,” I said, “what would you advise?”
It’s an unfair question, of course, but one that is asked all the time. John McHugh, MD, a prominent Georgia urologist, had an interesting response to this: “The irony of the question,” writes Dr. McHugh in The Decision, a book about the treatment of and his experience with his own prostate cancer, “is that I am not a big fan of my father.”
But I knew that Keith had a good relationship with his father.
“I’d tell him to get surgery,” said Keith immediately. “But you have to make your own decision.”
I tentatively offered that I had been thinking about active surveillance. Keith did not throw up his hands and collapse operatically on his desk. “It wouldn’t be my first choice for you,” he said. “But I don’t think that it’s a stupid decision. If I did, I would tell you.” To be clear, Keith wanted me to have surgery, firmly believed that I should have surgery. But had I argued vociferously for active surveillance, which I wasn’t prepared to do at the time, he wouldn’t have stood in my way. With the level of cancer I had, the decision-making process, more than with most cancers, is in the hands of the patient. That’s good, I suppose, but it’s also confounding.
And so we left the consult aware of one salient fact: Figuring out what to do about my low level of prostate cancer would involve as much art as science. There were no absolutely correct answers and no absolutely wrong answers.
So that made it easier.
And harder.
“There are no rules!”
After our conference, I saw in a letter that Keith had written to my family ph
ysician: “I had a discussion with Jack regarding the options for localized prostate cancer in older men,” it read.
Jesus, I not only had cancer but was also an “older man”? I had truly never considered that before.
A FEW WEEKS LATER I had a meeting with one of Penn’s radiation oncologists, John Christodouleas, MD. He was glad that Keith had sent me. “Many patients never see a radiation oncologist because they get their information from the urologist,” said Dr. C. “Keith did the right thing.”
I liked Dr. C. despite the fact that, unexpectedly, he performed a digital rectal exam on me. I figured radiology guys adjusted beams, turned dials, and stayed the hell away from the nasty stuff, but it was SOP, Dr. C. said—a DRE helps him “score” the cancer. A Johns Hopkins radiologist was visiting Dr. C. that day, and he also performed a DRE. “On the way out,” I said to Dr. C., “I’m going to ask the parking attendant if he wants to take a shot, make it a three-for-a-dollar day.”
The fact that the doctors didn’t feel anything, combined with my Gleason score and the results of the biopsy, made me a T1—“tumor present but not detectable by clinical exam or imaging.” My cancer was more specifically a T1c, which meant that it was slightly worse than a T1a or a T1b but not as bad as a T2, which means that the tumor can be felt by clinical exam. A cancer graded a T3 means that it has escaped the prostate.
To explain the radiology option, Dr. C. sketched out a simple graph with “age” on one side, “intensity of side effects” on the other. In general—emphasis on “in general”—younger men do better with surgery and older men do better with radiation. “As patients get older,” he said, “they don’t tolerate surgery as well. They just don’t recover the same way as younger patients. By contrast, with radiation, the longer you’re alive the more at risk you are for secondary cancers caused by radiation. So we do not like to treat younger patients with radiation.”
On Dr. C.’s graph, impotence and incontinence (the “side effects”) crossed age somewhere around 65. Which means that theoretically, a person who is about 65 can expect similar outcomes from surgery and radiation. But that is a guess. An educated one, but a guess nevertheless. “What doctors don’t agree on,” said Dr. C., “is where these curves cross. Some people put it at 55, some people at 60, some people a little older. At 62, you’re somewhere near that sweet spot.”
Even men who have done sketchy research come to a radiology session with this stark bit of information: If you have radiation and the cancer returns, neither further radiation nor surgical intervention will help you.
But Dr. C. says that is not quite true. “There are lots of things that can be done, including surgery,” he said. “But it is true that many surgeons do not like to operate, and some will not operate, on men who have had radiation. The surgery is more complicated and the side effects are rougher on the patient.”
The reason for that is the scar tissue that forms around the irradiated area. “Surgeons work easily when there are planes of dissection, and tissue can naturally separate along these planes,” explained Dr. C. “After radiation, however, those planes of dissection fuse and it’s much harder surgically. So it’s not that you can’t. It’s that it’s more complicated.” And he added this: “The most important thing to remember is that meaningful reoccurrences of prostate cancer are extremely rare.”
Translation: Dr. C. did not rule out radiation as a treatment modality simply because of that worst-case scenario of the cancer returning.
(I later asked my surgeon, Dr. Lee, about operating after radiation. He agreed it was more difficult, but doable. “I think the major concern is rectal injury during that type of surgery,” said Dr. Lee. “Even if you sew it up correctly, guys can end up with really bad complications.”)
I asked Dr. C. if patients make a choice based simply on “feel”—that art-trumping-science thing. He understood the question perfectly.
“If you had a bad experience in your family with radiation, you will probably say, ‘I’m going to have surgery,’ ” he said. “Or surgery didn’t work out for someone so you choose radiation. That is a perfectly fine reason for choosing one treatment or the other. As long as one understands the toxicity profile [his term for side effects], feeling one way or the other about a procedure is perfectly legitimate.”
And halfway through Dr. C.’s discourse I knew how I felt. If I were going to get intervention, it would not be radiation. For these reasons:
1. I still didn’t like that scenario by which the cancer could return and future options would become more difficult after radiation. I saw his point about surgery being more difficult but possible as a distinction without a difference.
2. I didn’t feel like committing to the radiation routine, which involves 35 to 45 visits, usually on a 5-times-a-week schedule. If that’s a silly reason for disliking it, well, that’s okay, but it’s my reason.
3. I am not scared of surgery, probably because I’m a veteran of it. Orthopedically, I’ve been through procedures on my neck, back, Achilles tendon, and both knees (arthroscopic), and for good measure, I had several inches of my colon snipped off because of diverticulitis. I came through everything just fine. Get in, get it done, move on: That is my philosophy.
4. As soon as I heard that the radiation beam passes close to the rectum—and Dr. C. was candid enough to admit that “rectal involvement” is a potential side effect, occurring in probably in 1 to 2 percent of cases and some say more—I crossed it off. I didn’t want to make my rectum any part of this deal. Have I told you how much I hate digital rectal exams?
Take note that radiation is a main tool in cases where the cancer has escaped the prostate; there is no value in removing the prostate surgically if the cancer has spread. So I am not trashing radiation per se. Plus, I interviewed urologists who greatly respect radiological treatment. “Even for those of us who were trained as surgeons and believe that surgery is how you get rid of cancer,” says Pablo Torre, MD, a urologist at the Veterans Affairs Medical Center in New York City, “radiation therapy has come to the point where it’s almost equivalent.”
I will tell you negative things that other doctors had to say about radiation in Chapter 12, but they have more to do with philosophy and finances than they do with the procedure itself.
I can only tell you how I felt about it.
Then, too, at that time—early in the decision-making process—the fact that I put surgery ahead of radiation was academic.
“I feel pretty comfortable about active surveillance,” I told my wife.
She nodded her head. She did, too. Kind of. Sort of.
So I wrote an October 17, 2011, column for my local newspaper, the Morning Call in Allentown, Pennsylvania, talking mostly about how I now had the “It” disease, how the New York Times had weighed in on it, how urologists argued with task forces, how nobody was sure about what to do. And I informed the readers that I had chosen active surveillance.
Many of them called, e-mailed, or sent me a letter.
Some told me I was nuts.
THE MORNING CALL
OCTOBER 17, 2011
Weighing Pros, Cons of Cancer Treatment
While there’s never a good time to get the Big C, I have to tell you: My timing on this one is pretty good. Since I was handed a diagnosis of prostate cancer a few weeks ago, people like me are all the rage. It’s about time, too. None of my previous medical issues, most of an orthopedic nature, have [caught] fire with the public. And that diverticulitis thing? Trust me, nobody wants to talk about that, before, during or after lunch.
But once a few voices in the medical community suggested that prostate cancer is (a) overtested, (b) overdiagnosed, and (c) overtreated, we suddenly had a new It Disease. And I happen to be one of the new It Sufferers.
The slogan of The New York Times in recent weeks might as well have been: All the Prostate News That Fits, We Print. There have been segments on the nightly news, arguments in medical journals, spirited discussions on blogs. PC (does any dise
ase more deserve its own acronym, even one that’s already taken?) was even a topic in one of the 437 Republican presidential debates that have taken place recently. I don’t have this nailed down, but I think that Newt Gingrich believes a cancerous prostate is a Democratic plot to institute death panels, while Herman Cain is positive that 9 percent of the prostate-cancer population should have surgery.
Anyway, my diagnosis and the concomitant avalanche of news articles have forced me to do something against my nature—careful research. (My preferred method of subject analysis had always been to ask my wife, “Would you Google that?” and wait for her answer between “Law and Order” reruns.)
But since I find myself in the medical spotlight, I’d like to share with you my thoughts on PC, with the hope that I can straighten out some of the inevitable confusion that has arisen out of this controversial recommendation. I submit that I deserve the stage, incidentally, having heard in recent weeks one of the most unsettling sentences in the English language: “Relax now, while we insert the anal probe, inflate the balloon and slide you into the MRI.”
Just to give you the baseline information: I am a 62-year-old Caucasian male, in otherwise good health, aching knees notwithstanding. So here we go:
My family doctor suggested several months ago that I should see a urologist because my PSA level, while not alarmingly high, had risen.
Of course, the PSA test may not be reliable at all. But, lo and behold, this one did some good since a subsequent biopsy revealed cancer. But did I really need to know? Chances are, I’m going to die of something else since prostate cancer grows so slowly.
Still, I was glad to find out and also glad to hear that the amount of cancer is small and contained within the prostate. Good news. Then again, any cancer can spread and conceivably kill you. Bad news. But, remember . . . odds are, I’ll die of something else. Well, that might be true if I was, say, 70. But 62 is too young to be sure about any kind of cancer.
The Prostate Monologues Page 6