Seven men and their seven decisions:
More Options, and Decisions, for Men With Prostate Cancer
By DAVID KIRBY
October 3, 2000
Mayor Rudolph W. Giuliani of New York decided on a treatment for his prostate cancer, which was diagnosed in April, after months of private deliberation and public speculation.
In mid-September, the mayor, along with his doctors
at Mount Sinai Medical Center, announced he had received radioactive seed implants during an out-patient procedure earlier that day.
But in deciding on a treatment, Mr. Giuliani said he had great difficulty weighing his choices. Doctors refer to the process as constructing a "decision tree" or "clinical pathway," as patients weigh each pro and con.
Prostate cancer is the most common cancer, after skin cancer, among American men. Some 180,000 new cases were diagnosed last year, and about 37,000 men died of the disease, according to the American Cancer Society. African-Americans and those with relatives who had prostate cancer are at increased risk.
But the disease progresses at a relatively slow pace, so men in the early stages can take some time to explore the expanding treatment options available to them.
Prostate cancer is usually detected and assessed with a combination of tests. These include a blood test for prostate specific antigen (P.S.A.), recommended annually for men 50 and over (earlier for those at higher risk). Results under 4 nanograms per milliliter are usually considered normal. Results over 10 are high, and between 4 and 10 are considered borderline.
Next comes the digital-rectal exam, in which the doctor palpates the prostate gland with a finger to detect abnormalities.
A transrectal ultrasound may also be used. If cancer is suspected, a needle biopsy is done of the gland, and sometimes of nearby lymph nodes. If a tumor is detected, pathologists will "grade" two pieces of tissue and rate them from 1 to 5 on the Gleason scale, which determines the cancer's aggressiveness.
The two scores are added together. Sums of 2 through 4 are considered low (slower growing), 5 and 6 are called intermediate, and 7 to 10 high, with the worst prognosis. Finally, doctors may do other tests to see if the cancer has spread, . These include radionuclide bone scans, CAT scans (coaxial tomography) and M.R.I.'s (magnetic resonance imaging).
Deciding on treatment can be daunting, partly because the options today are far better than 10 years ago.
They include: improved surgery, with "nerve sparing" to help reduce incontinence and impotence; external-beam radiation, in which standard X-ray beams are directed at the prostate area; highly targeted proton radiation, in which where protons are "shaped" into beams to match the shape of the tumor and to eliminate damage of surrounding tissue; radioactive seed implants, in which rice-size pellets are injected into the prostate to kill cancer cells; new hormone treatments to block production of testosterone, which feeds cancer cells; combination therapies using two or more treatments at once; and "watchful waiting," in which patients seek no treatment, but simply monitor themselves for problems (a common practice in older patients).
And, new treatments continue to be developed in clinical trials around the country.
Here are the stories of seven men and the options they selected.
Damon O. Harris, 50
Chose hormones, for spreading cancer
Damon O. Harris spent much of the 1970's as a singer with the Temptations, the Motown group. But now Mr. Harris, 50, spends time educating African-American men about their higher-than-average risk of prostate cancer.
Mr. Harris had never been screened for prostate cancer. But in early 1998, he noticed a lingering pain for several days after playing with a friend's newborn. He had a digital examination and his P.S.A. test came back at over 13. Within days, he was facing a cancer diagnosis.
Mr. Harris began what he called "my crash course in Cancer 101."
"I had little time to do research," he said. As it turned out, in his case, the decision was simple. "My cancer was metastatic," he said. "I opted for the best and only treatment available, which is hormone therapy."
Mr. Harris, who lives in Reno, Nev., immediately began an oral medication, Casodex, to neutralize testosterone and other male hormones in his system, followed by weekly injections of Lupron, which shuts down new production of male hormones, like testosterone, needed for prostate growth. "I will be on it for the rest of my life," Mr. Harris said.
But he remains philosophical. "This was God's designation, and I had to accept it to overcome it," Mr. Harris said. "I was sad but not bitter. I had just met someone, and I cared for her very much. I was concerned how this would affect the relationship."
The most severe side effects of hormone therapy are hot flashes, weight gain and reduced sexual desire. Mr. Harris experienced all three.
"I no longer have the hot flashes, for which I'm glad," he said. "But I was concerned because I thought possibly my treatment wasn't working anymore. But they only last until your system adjusts."
He exercises regularly to keep the weight off, and though his libido has changed, "I am still a man," he said. "More importantly, I've learned things about myself that I didn't know when it was complete."
Mr. Harris is in "tentative remission," though frequent tests and scans "sadly remind me of my situation." He plans to begin intermittent treatment soon to fight osteoporosis. For now, promoting early detection and treatment through the Damon Harris Cancer Foundation has become his life's work, he said.
"It's important to me that other men not go through what I've experienced, particularly African-Americans."
Eugene Waterman, 71
Chose proton beam radiation
As a doctor, Eugene Waterman, 71, was especially aware of the risks of prostate cancer and the means of detecting it. In 1998, Dr. Waterman, a semiretired psychiatrist, learned that his P.S.A. had suddenly risen to 11, very high.
A biopsy diagnosed cancer with an aggressive Gleason score of 8. Fearful of the risks of surgery, Dr. Waterman, of Hot Springs, Ark., began researching proton- beam radiation therapy (P.B.R.T.).
Unlike X-rays, the standard forms of external radiation, P.B.R.T. is highly specific and individualized. Protons can be "shaped" into a beam to match the exact shape of the tumor, whereas with standard treatment - photons and electrons, which are harder to direct - reach surrounding healthy tissue.
Dr. Waterman received this sophisticated form of therapy at the Loma Linda University Medical Center in California. But he also agreed to have standard radiation treatment to the pelvic area, he said, because of signs the cancer might have spread.
"The side effects of radiation were mild," he said. "There was some fatigue at the end of the week and some diarrhea." He had some mild anal soreness, too, which was treated with a cortisone salve.
But the treatment also involved hormone therapy, a Zoladex injection every three months for a year. The resulting testosterone depletion was difficult, Dr. Waterman said. Because the condition can lead to bone loss, he asked for a bone scan, and some borderline osteoporosis was found. Now he takes Fosomax twice a week.
But he also experienced hot flashes, 10 to 15 times a day. He suffered a complete loss of libido and sore, enlarged breasts. "But I have been off Zoladex for over a year," he said. "Testosterone levels are back to normal levels and side effects have gone away."
His sexual ability has returned with help from Viagra, Dr. Waterman said. "But desire is not as strong as it was."
Today, his health is good, and his P.S.A. has remained at 0.26 for the last year, though he realizes there is still a "50-50 chance" of eventual relapse.
Thomas Sellers, 50
Had His Prostate Removed
Thomas Sellers, a 50-year-old resident of Brookline, Mass., is not only a prostate cancer survivor, he is also chief financial officer of the New England division of the American Cancer Society.
As a cancer professional and an African- American, Mr. Sellers
knew about the need to begin annual P.S.A. tests at 45. A test in late 1998 showed that his P.S.A. had leaped to 8.5. A biopsy confirmed cancer.
"I was not surprised, but I sure was scared and angry," Mr. Sellers said. He and his wife searched the Internet, and met with others who had had cancer and a "full range" of surgeons and oncologists. "The most important thing was, we took our time, had the pathology reports read by different doctors, got an M.R.I. to ensure that the cancer was still in the prostate," he said. Mr. Sellers and his wife took four months to reach a decision.
Mr. Sellers's doctor, like many urologists, immediately recommended surgery. "I dropped him quickly," said Mr. Sellers, aware of the options and not ready for surgery.
But Mr. Sellers's cancer, a 7 on the Gleason score, was fairly aggressive, so watchful waiting was not an option, and radioactive seeds were less practical, "though that would've been my preference based on my own research," he said.
Ultimately, Mr. Sellers chose surgery, a nerve-sparing radical prostatectomy. Impotence, he said, worried him greatly, adding, "The likelihood of a cure because of early detection and the fact the cancer was still within the prostate outweighed fear of side effects."
After surgery, Mr. Sellers wore a catheter for two weeks to drain urine. He took an eight-week medical leave and did not recover his full strength for six months, he said.
He endured short-term incontinence, which he called disconcerting. "It took six months or more before I was completely dry, and nine months before I stopped wearing a pad," hes said.
As for sexual activity, Mr. Sellers has some problems, despite the nerve-sparing, and he is "experimenting with Viagra, with intermittent success."
But his cancer is cured and his P.S.A. is back to zero.
Edward Kuenzi, 64
Enrolled in clinical trial
Edward Kuenzi, a 64-year-old former farmer, truck driver and schoolteacher, said he received a prostate cancer diagnosis "by coincidence only."
In 1993, Mr. Kuenzi's trucking company sent him in for a routine exam to get a truck driver's license. The digital exam was abnormal and the P.S.A. was high, 14.5. Because his health was good and the cancer did not appear to have spread, Mr. Kuenzi chose surgery. His P.S.A. returned to normal.
But 18 months after the operation, his P.S.A. began to rise. "I realized I hadn't been cured," Mr. Kuenzi said. "My cancer had come back." Indeed, the cancer had spread beyond the prostate gland. A biopsy, a bone scan and an M.R.I. found some cancerous cells on a small spot just below the bladder. Mr. Kuenzi's doctor recommended external beam radiation, at a relatively low dose. He received 39 treatments, with few side effects, he said. The radiation lowered Mr. Kuenzi's P.S.A. again. Now, four years later, it has begun to rise again.
He took another battery of tests, though no cancer was found. His doctor recommended "watchful waiting" and continued P.S.A. monitoring, but that was not enough for Mr. Kuenzi. He felt he needed to do more, and he began seeking out clinical trials of experimental new drugs. Mr. Kuenzi, who lives in central Oregon, found a clinical trial that was enrolling patients at Oregon Health Sciences University in Portland involving a drug called Calcitrol, a form of vitamin D thought to slow the cancer growth.
He takes a medication orally four times a week, curtails his calcium intake and has monthly examinations at the trial center, which is about 60 miles north of his home.
"It's too soon to tell if it is helping me," Mr. Kuenzi said. "But there are no side effects and no problems." He expects to remain in the trial for a year or two.
Meanwhile, Mr. Kuenzi said, his health is "excellent." But he has suffered severe sexual dysfunction from the surgery. "The impotence just got worse with time," he said.
After his surgery, Viagra was not yet available. After trying injections, rather unsuccessfully, he had a penile implant, which he called "not as effective as it should be." But he says he and his wife "can still be very intimate, even without intercourse."
Melvin S. Katz, 56
Received radiation implants
"I denied for eight months that anything was wrong with me," said Melvin S. Katz,
a 56-year-old health care consultant from Forest Hills, N.Y. "I noticed symptoms in July 1993 and didn't do anything about it until the following March."
By then, Mr. Katz's P.S.A. had leapt to 91. A biopsy showed cancer with a Gleason score of 8. "I wasn't normal anymore," he said. "I had cancer. I would die! Soon!" Only 48 at the time, he said he felt too young to have this "old man's disease."
Mr. Katz immediately went on combination hormone therapy (Eulexin plus Lupron) to halt the production of testosterone, the hormone that feeds prostate cancer. Meanwhile, he said, he made "the most difficult and agonizing decision" of his life.
He received conflicting advice from doctors, survivors, family and friends, though most urged surgery. Mr. Katz chose high- dose external beam radiation five days a week for eight weeks at Columbia-Presbyterian Hospital. "It afforded me a quality of life," he explained, adding that side effects were mild.
Three months after radiation, Mr. Katz stopped the hormones.
"I wanted to see if I was cured," he said. He was not.
His P.S.A. went from 0 to 25 in just nine months, and he resumed hormone treatment. Then, in 1995, a prostate biopsy showed lingering cancer. "I couldn't take any more external radiation, and surgery was risky because the radiation increased the chance of bleeding," he said.
His doctor at Columbia-Presbyterian suggested Palladium radioactive seed implants, rather uncommon in 1995, and he agreed.
The procedure was done under local anesthetic and lasted about an hour, while doctors injected rice-size pellets into his prostate. "It was one night in the hospital," Mr. Katz said, followed by a few days of discomfort.
The radiation lasts for six to nine months, "and the only restriction is no little children or pregnant ladies on your lap," Mr. Katz said. Meanwhile, his P.S.A. dropped from 25 to 0.9. Two years ago, he stopped the hormone therapy, replacing it with an herbal formula called PC-Spes, which Mr. Katz credited with lowering his P.S.A. to 0.3, where it remains.
But the implants "definitely had an impact," he said. "They killed most of the cancer, allowing me to stabilize and keep it under control with hormones and PC-Spes."
George Ripol, 58
Needed to try several treatments
George Ripol had a very experienced urologist, Dr. Jim Sehn, the surgeon for John Bobbitt. But even Dr. Sehn could not detect anything abnormal about Mr. Ripol's prostate, even though his P.S.A. had skyrocketed to 23. A digital examination, a 9- sample biopsy and then a 12-sample biopsy all revealed nothing. It was not until the Johns Hopkins Brady Urological Institute performed a 24-sample biopsy that cancer was found.
"It was in the transition zone, right next to the urethra, and hard to find," said Mr. Ripol, a 58-year-old resident of Manassas, Va.
"I was shocked, and panicked," Mr. Ripol said. "But in a way I was relieved. I felt it had to mean something. And it did." Surgery was recommended because he was relatively young and because of the apparent containment of the tumor. "Surgery seemed like the silver bullet," he said.
The prostatectomy, with nerve-sparing, was performed in December. But subsequent pathology reports showed the possibility that the cancer remained in the pelvic area. And his P.S.A., 4.5, was troubling. "So my doctors recommended a double dose," he said. The doctors administered external beam radiation with hormone therapy, which started a month before the radiation treatment and will continue for a year or two.
In May, Mr. Ripol began monthly injections of Lupron, and he took Casodex pills daily. In June, he began external beam radiation, five days a week, for a total of 33 sessions.
Side effects from the surgery were minimal, he said, as were those from radiation. "Maybe a little fatigue," he said, "a little irritation of the skin and bowel areas, but very little." Hormone therapy, on the other hand, hit like "male menopause," Mr. Ripol said. "The hot flashes are very disconcerting and continue to wake me up at night. I've just tried to get used to them."
One thing that has not returned, and may never, since the radiation may have killed some nerves, is his sex drive. "We'll see," Mr. Ripol said. "Frankly, at my age, it's not a big deal, compared to the alternatives." In August, after all the treatments, Mr. Ripol received his first clean bill of health: a P.S.A. under 0.1 "I'm still on the hormone therapy and expect that will last a year or two," he said. "But the mental relief is unbelievable."
John Sosdian, 79
Decided to watch and wait
John Sosdian, a 79-year-old retired Army electrician from Tinton Falls, N.J., began annual screenings for prostate cancer in 1992.
Though Mr. Sosdian's P.S.A. was slightly elevated, at 3.9, nothing abnormal was noted in a digital examination. For several years, his P.S.A. remained in the 5 to 7 range and all exams were normal. Doctors thought the higher P.S.A. numbers were explained by Mr. Sosdian's age.
Then, in September 1999, the P.S.A. jumped to 9.4, and a biopsy led to a cancer diagnosis. The tumor scored a 6 on the Gleason scale, showing a moderate growth rate, even though the digital examination still revealed nothing. Given Mr. Sosdian's age, surgery seemed risky. Mr. Sosdian's doctor recommended hormone therapy combined with radiation seed implants. But he also mentioned the idea of taking no action, something known as "watchful waiting."
Mr. Sosdian carefully researched the side effects of each treatment and was discouraged by what he found. He discussed the treatment extensively with his wife, Lorette. "We agreed that watchful waiting was the best selection," he said, "because of my age and strong desire to maintain the relationship and lifestyle I have, which I treasure."
Mr. Sosdian's doctor was not convinced he was doing the right thing, and he urged his patient to see a radiation oncologist before making a final decision. "He said I was putting my life on the line," Mr. Sosdian said.
But Mr. Sosdian had "complete comfort and peace" with his decision, adding that "the sole purpose" of speaking with another doctor "was to talk me into having aggressive treatment." And, he figured, he probably will die from something else.
Mr. Sosdian has an exam every three months (with nothing abnormal detected) and a P.S.A. test. Last April, the P.S.A. was down to 6.6, and it has never risen above the 9.4 at diagnosis. He believes that nutritional supplements and a better diet play a role.
"I feel so good about what I am doing," Mr. Sosdian said. "I rarely have the thought that I have cancer." He said he had "no concern if the cancer should metastasize, resulting in my death."
But, he added, "watchful waiting doesn't necessarily mean no treatment." Instead, he labeled it "delayed therapy."
Mr. Sosdian will have a P.S.A. test and an exam every three months and a ultrasound exam every 12 months for two years, followed by two P.S.A.'s and one ultrasound each year after that.
If he needs treatment, he said, he will opt for something called "Prost-R-cision," which uses irradiation to excise the prostate without cutting muscles and nerves and reducing incontinence and impotence risks.