Radiation oncologists form a plan for a patient’s treatment. For reasons that surpasseth the understanding of this book’s author, proton beam may more ideally fit one patient’s anatomy than IMRT, just as the reverse might be true. Penn’s Dr. John Christodouleas offers this comparison: “Proton beam is a hammer and IMRT is a screwdriver, so what’s left to decide is whether a patient’s body is more nail or screw.”
One person who contacted me about my newspaper columns is a strong advocate for the hammer. “I truly believe that proton beam radiation saved my life,” says Larry Christoff, a 60-year-old retired teacher. That is entirely understandable. If you have a successful intervention, that will be your belief. I would not tell anyone that “robotic surgery saved my life” because I don’t believe my life was in danger. But I would sure as hell defend it.
As Dr. C. sees it, however, the differences between the two radiological modalities aren’t that great. Radiation oncologists, not to mention patients, would of course prefer that insurance plans cover both options, but in most cases, either has a chance of being successful in treating prostate cancer.
Paul Rosen
AGE AT DIAGNOSIS: 67
PSA LEVEL: 7
GLEASON SCORE AND BIOPSY REPORT: 3 + 4; involvement in two cores
DECISION: Radiation
OUTCOME: Complicated by ongoing Ferris wheel of PSA readings
Eight years ago, just before he was to be married, Paul was diagnosed with prostate cancer (via the usual route, an elevated PSA level and a subsequent biopsy). He knew about all the options and made a preliminary decision to go with active surveillance.
Uh, not so fast. Here is Paul’s story.
“Active surveillance is not an option,” he was told in no uncertain terms by his fiancée, Andra.
“She’s a little more fact based than I am,” says Paul. “I tend to be a little . . . airy. She did the research and determined that radiation would be best. So that’s what I did.”
Andra believed that radiation would do a better job than surgery of sparing the nerves involved with sexual activity. That might not be statistically proven, but Paul’s age made him a good candidate for radiation. Indeed, both his potency and his continence returned to almost normal.
“Everything held up for about four years, which was perfect for newlyweds, until my PSA readings started going up. One time the reading went all the way up to 53. Then it came back down to 20. Then it went up again. Crazy. All over the place. Yet whenever I would have a CT scan there would be no sign of any more cancer. Nobody seems to have any idea why my PSAs are so scattered.”
Because of the scary readings, Paul was given a prescription for leuprorelin (Lupron), which temporarily shuts down testosterone production. Shut down the testosterone and you shut down the growth of cancer cells, just as castration did when it was used to halt metastatic prostate cancer decades ago. Paul also takes ketoconazole, a synthetic antifungal medication that also has been found to suppress testosterone production.
But Lupron is the one that has really changed his life because it comes with its own carnival of potential side effects—just about anything you can think of, including painful or difficult urination, loss of bowel or bladder control, testicular pain, impotence, and loss of libido. Paul has avoided most of those except for the last one, the one that he had felt so good about maintaining after the initial radiation.
“I still feel I’m in a pretty good place,” says Paul. “I work five days a week, still go to the gym. The medication leaves me a little tired, but I’m okay.
“However, there is no way you get an erection with Lupron. You ask me to choose between ice cream and sex these days, and I’m going with ice cream. Trust me, it wasn’t that way before.”
TAKEAWAY: Lupron can produce “PSA bounce” or “PSA flare.” Numbers can also fluctuate because of BPH or prostatitis (inflammation of the gland). But with PSA readings that skyrocket to the levels Paul’s have, there is also a possibility that the cancer was not eradicated by the initial radiation. “The most accurate way of determining whether or not cancer remains in the prostate is a biopsy,” says Dr. C., the Penn radiation oncologist.
There are many possible causes for wildly varying PSA readings. And let me repeat the mantra of this book: I am not a doctor. Paul’s doctors know more than I do. I hope it gets worked out.
Mike Ordille
AGE AT DIAGNOSIS: 62; no cancer
PSA LEVEL: Rose to 2.7, then fell back to 1.7
GLEASON SCORE AND BIOPSY REPORT: First biopsy inconclusive, second biopsy negative
DECISION: No intervention
OUTCOME: So far, so good
I included Mike’s experience even though he was not ultimately diagnosed with prostate cancer. Many other men have shared his confounding experience. Here is Mike’s story.
“I got yearly checkups and my PSA was always in the 1.7 range, but in 2010 it shot up to 2.7. I had always heard that was okay, but my family doctor strongly recommended that I see a urologist because of the elevation. The urologist advised me that, even though my PSA was low, there was still a chance that I had prostate cancer. So, I could either wait and see or have a biopsy.
“But the mere mention of ‘prostate cancer’ planted the seed in my brain, and I started thinking, ‘My God. I have prostate cancer.’
“The biopsy, which I had in August of 2010, was very painful and something that I wouldn’t want to go through again. But though it came out negative for prostate cancer, the urologist said that there were areas of my prostate that were ‘suspicious.’
“ ‘Suspicious’? What the heck does that mean? They told me that they could keep on monitoring the situation or give me another biopsy. Of course I didn’t want another biopsy, but remember that seed that was planted: I might have prostate cancer.
“So I agreed to another biopsy in September. Biopsy day arrived and I wasn’t feeling all that great, fever and chills, and, worst of all, burning during urination. What was going on? My wife wanted me to reschedule, but the doctor said, ‘Oh, he’ll be fine.’ I agreed to it because of that I-want-to-know-now mentality.
“The procedure wasn’t nearly as bad as the first biopsy, not even close. It was almost like they knew how bad the first one was and decided ‘There’s probably no cancer there, so let’s not be too rough with him and just take the money and run.’ Once again I got the news that no prostate cancer was detected, and, obviously, I thought it was behind me.
“But in November the burning with urination started again and didn’t stop. I ended up in the emergency room with a high fever, vomiting, and diarrhea. It took a long, long while to make a diagnosis, but finally they found that I had contracted E. coli from the first biopsy. So when I went for the second biopsy, rather than find out what was wrong with me, they exposed me to more infection. The infectious disease doctor put me on a strong antibiotic and soon afterward I was released.
“I eventually ended up seeing a urologist at Thomas Jefferson University Hospital in Philadelphia, and he couldn’t understand why my treatment was so aggressive. I haven’t had another biopsy, my PSA has stayed around 1.7, and things are just fine.”
TAKEAWAY: Mike’s story illustrates the ultimate biopsy nightmare: Undergo a procedure that is painful, fails to uncover cancer, and—worst of all—unleashes harmful bacteria in your body.
And then be asked to repeat the procedure the following month.
Men are given antibiotics prior to a prostate biopsy. Pre-biopsy, I was given ceftriaxone, and the biopsy needles themselves are treated with an antibiotic. But as Dr. Walsh says, “Today, many patients have antibiotic resistance to drugs like Cipro because of their widespread use, and some patients develop a serious infection despite antibiotic treatment.” Dr. Lee, while hopeful about the antibiotic-coated biopsy needle research going on in Israel, describes the situation thusly: “Very scary.”
Reasonable minds can disagree—and do—on the wisdom of getting a biopsy based on a PSA of 2.7. B
ut it seems obvious that Mike did not need it. The elevated reading could’ve come from a lot of things that were not cancer. His PSA has come back down to 1.7 and stayed there.
George Yasso
AGE AT DIAGNOSIS: 50
PSA LEVEL: 800
GLEASON SCORE AND BIOPSY REPORT: None; disease ruled terminal at detection
DECISION: Chemotherapy, radiation, and dietary and alternative treatments
OUTCOME: Fatal
Two decades ago, George and I coached youth basketball for different teams from the same club in Bethlehem, Pennsylvania. George was also president of the club and proved to be that rare person who cared about everybody. His own son, Hank, was a terrific athlete, but on many occasions George gave the practice time that could’ve gone to Hank’s team to other teams. Trust me: That almost never happens in the my-kid-is-all-that-matters world of youth sports.
One of George’s younger brothers, Bart, is a well-known running ambassador for Runner’s World magazine. Bart battled alcohol and drug use as a teenager, and it was his big brother who turned him around. “George gave me the tools,” says Bart. “He put me on the right path. He was like a father to me.”
This sounds like something you say about someone when he’s gone, but it happens to be true: George Yasso made everybody around him better.
Here is George’s story.
“George didn’t have any fear of doctors or anything like that, but he only went when he needed to,” says George’s brother Gerry, one of seven kids born to Rose Marie and George F. Yasso, a foreman at Bethlehem Steel. “He always played hurt [George was a football star at Hofstra University and played rugby until his late 30s], and that’s how he lived his life. But he took care of himself. He watched his diet and he worked out five days a week. It wasn’t like he let himself go.”
In the spring of 2001, George was feeling so bad and had lost so much weight that he went to the doctor. “Upper respiratory infection” was one diagnosis. He continued to slide, and finally his wife, Jean, practically dragged him back to the doctor. For the first time in his life he got a digital rectal exam and a PSA test. His level was 800. His cancer had metastasized and was already at stage IV.
“Even then, if you asked George how he felt his answer was always the same,” says Jean. “ ‘Fine,’ he would say, ‘I feel fine.’ ”
George kept the news quiet, not telling even his parents or his son and two daughters. “It was the way George did everything,” says Jean. “He picked his team, made his plan, and that was it.”
George’s battle to keep his diagnosis of terminal prostate cancer from becoming public knowledge wasn’t successful, however. He was an extremely popular and well-known guy around Bethlehem and word got out, though not always in the right way. Another brother, James (better known as Spud), learned that George had cancer when, in an egregious violation of George’s right to privacy, a doctor told him during a checkup. One of George’s daughters found out when a blabby technician came out after reading George’s scan and announced, “Oh, he has cancer.” And his treatment wasn’t without mishap, either: During one chemo treatment, an inattentive nurse inserted the IV incorrectly and George got severe burns all the way up his arm.
By the time I found out that George was sick, he had been through chemo and radiation and was deep into alternative treatments. I remember his describing to me a particularly involved series of enemas he was getting. He didn’t tell me in so many words that he thought he could beat prostate cancer, but I knew that’s what he believed.
“It was in George’s head from the moment he was born,” says Gerry, “that he could beat anything.”
From time to time his PSA went down because of the medication, once all the way to 3, but then it went back above 300. It was a constant series of ups and downs, but through it all George kept his good spirits. One July morning he reported for chemo wearing his golf cleats, got his treatment, and went directly to walk a round of golf.
“He told me to help him up a hill on the last hole,” remembers Gerry, “and when we got to the top he said, ‘Okay, let go of my arm.’ He didn’t want anyone to see him getting help.”
The course of George’s disease was inexorable and hard to watch. This once vital man who could talk the shell off a hard-boiled egg was sometimes rendered speechless by growing tumors. This line-busting fullback kept falling down because of tumors that threw off his balance. When it was obvious he was near the end, George still refused hospice treatment and refused to make a will. “If I do that,” George told his family, “I’ll be giving up.” A lawyer came to his bedside and he did it the day before he died—November 13, 2003.
After such ordeals, family members cling to little blessings. George had gotten one cancer-free year to watch his son Hank play linebacker for the University of New Hampshire. “At 6:00 p.m. on the night he died,” remembers Jean, “George was lying in bed watching game films with Hank. He could barely speak, but he was trying to make some point or another about defense. He died three hours later.”
With thousands of others, I stood in line for hours at the viewing. Five busloads of coaches, teammates, and parents came from New Hampshire. The Yasso family received visitors for 11 hours.
I ask Jean to look back and come up with one word to describe how she feels.
“Cheated,” she says after thinking for a moment. “And not just me. My kids got cheated. Their children will get cheated because they’ll never know a man who would’ve been the greatest grandfather ever. The community got cheated for the things that George will never be able to do. And I got cheated because I’m missing the best person I ever knew.”
“One thing George told me before he died has stuck with me,” says Gerry. “He said, ‘There’s a lot of things I still wanted to do, and I regret that I won’t get them done. But one regret I don’t have? I spent enough time with my kids. I feel very connected to them.’”
That’s as fine a final thought as any I’ve ever heard.
TAKEAWAY: As with Jack Littley and so many others, both sides of the PSA debate could claim George Bartholomew Yasso as Exhibit A.
The USPSTF and its supporters would say that George’s cancer was so virulent from the outset that no screening test would’ve saved him.
Those in favor of PSA testing would say that if George had been screened when he was 40 or even 45, perhaps his PSA would’ve been elevated and he might’ve gotten treatment that would’ve saved his life.
Jean Yasso knows what side she’s on.
“I don’t want my son waiting until he’s 50 to be tested,” she says. “It was very frustrating back then because nobody talked about prostate cancer. It wasn’t like breast cancer, where there were fund-raisers and awareness months. There was a time—and I remember this—when a woman went to her doctor and whatever he said was what she did. ‘Oh, it’s nothing, just a little lump.’ Well, that changed. It has to change for prostate cancer, too.”
CHAPTER 16
... In which the author ponders the lessons of prostate cancer, offers tentative advice, and breaks bread with his prostatectomy pal
THE DAYS TURNED INTO WEEKS, the weeks turned into months, and this sentence turned into something out of a cheesy romance novel. But you get the point. Time marched on as it always does. From March through November 2012 I buried myself in prostate cancer research and interviews to the point where I almost forgot that I had had the disease myself.
All right, that’s a bit of a leap. Six days out of 7, maybe 13 out of 14, it’s easy to forget. Yes, intimate encounters are different, mainly because they now involve ED medication and are therefore arranged with the precision of Prussian parades. Spontaneity is a possibility, but not the watchword.
But I have no symptoms of disease. I have had two PSA reading since my surgery and both were near zero. My urinary function is normal. Pads are a distant memory. I can’t even get mileage out of my abdominal scars, which are all but invisible, save for the small one above my navel through which my
bagged and walnut-sized prostate was removed.
I have learned some things—a lot of things—about prostate cancer, which only made me realize how much I don’t know. All of those little snapshots that a man with prostate cancer must collect—the results of digital rectal exams, PSA tests, a biopsy, Gleason scoring, an MRI, a bone scan—are exactly that: snapshots. Only when viewed together do they form an intricate mosaic that requires interpretation by a medical professional.
But I sure as hell have formed some opinions, about both my own treatment and the prostate cancer world in general. I offer them here for men who have been diagnosed and don’t know what direction to turn in and men who have already had intervention that resulted in positive, negative, or in-between results.
Diet, nutrition, fitness, and lifestyle play a major part in the prostate cancer picture.
Rare is the cancer book—indeed, any health-related book—that these days fails to address the importance of general health in combating and recovering from illness. That doesn’t mean it wasn’t overdue. “I went through four years of medical school, six years of urology training, and had an oncology fellowship,” says Dr. Aaron Katz, “and during that whole time I heard maybe 30 minutes on the role of diet.” But it is an emerging field of study. For more information, I direct you to, among other publications, Dr. Katz’s Definitive Guide to Prostate Cancer. In it, he discusses what he considers to be health-enhancing and cancer-fighting foods for the prostate and even includes a section on how to eat a pomegranate. Another book, this one by Mark Moyad, MD, is called Promoting Wellness for Prostate Cancer Patients. Even Dr. Patrick Walsh, who was trained traditionally, details extensive diet and lifestyle information in his Guide to Surviving Prostate Cancer.
The Prostate Monologues Page 17