Man to Man
Roberta Heiman, Courier & Press staff writer
The first impression on seeing this room full of men is that they all look healthy. They gather once a month to learn and share experiences and to bolster each other. And they never brag.
"I asked once how many here who've gone through treatment still think they have cancer," said Norman Wilkinson. "Almost every hand went up. Once you have it, you know it can come back. I think that's why we stay so close; it's like waiting for the other shoe to fall. So none of us brag, except to say how we feel. And we feel pretty good."
These are the members of the Man To Man Support Group. What they have in common is prostate cancer - and a goal to live with it.
Their disease is one of the most insidious for men. It is the most commonly occurring cancer in men today and No. 2 cause of cancer deaths in men, ahead of colon cancer and second only to lung cancer. Prostate cancer brings fear also because of the potential side effects of treatment.
"Men hear the two words - 'incontinence' and 'impotence' - and they run for the hills," said Al Spillman, psychologist at the Evansville Cancer Center. "They're afraid to get treatment. They think, 'I can't be the man I used to be.' We try to get beyond that."
Wilkinson didn't run when he was diagnosed at age 65. He launched a quest for information.
"My background was in systems consulting," he explained, "so I wanted to dig in and find out everything I could... You hate to turn yourself over to the system unless you know what's going on."
His search led him to become one of the first members of the Man To Man group, where the emphasis is on information.
The group meets the second Tuesday of every month. Every other month, there's a guest speaker and wives and significant others can attend. On alternate months, the men talk among themselves.
Usual attendance is about 15 to 20 men. Their ages range from the mid-50's to over 80, and they come from throughout the Evansville area; it's not just for patients of the Evansville Cancer Center.
"On the street, when you hear the word 'cancer,' you think 'death sentence.' In this group, cancer is something you can live with, " Spillman said. "The operative words are 'live with.'"
The group has a three-fold goal: to support each man in his illness and recovery, to give each an opportunity to be helpful and to provide up-to-date information on prostate cancer and treatment.
With this cancer, even more that with others, patients have to decide among a broad range of treatment options - with no clear-cut guidelines and with some potentially dire side effects.
Some, like Wilkinson, have had radical prostatetectomies - surgical removal of the prostate.
Others have chosen the "watchful waiting' approach. Since most prostate cancer is slow-growing and occurs in men after age 65, many older men who have the ideas may never need treatment or are too frail to withstand major surgery. Some decide that the possible side effects of more-aggressive treatment outweigh the benefits.
Some have had what's called external beam radiation. It's much like getting a diagnostic X-ray, except that the radiation treatments are given over seven or eight weeks, five days per week.
Increasing numbers are choosing the radioactive seed implants, an outpatient procedure in which tiny pellets are imbedded into the prostate and emit radiation to kill the cancer.
Some have undergone hormone therapy. The goal is to lower the level of testosterone and other male hormones that cause prostate-cancer cells to grow. It doesn't cure the cancer, but in some patients it makes the cancer shrink or stop growing.
The group also includes some men for whom none of those standard therapies have worked. They've chosen experimental treatments.
Spillman said they're being pro-active patients - becoming informed partners in their health-care team.
For the rest of his life, Wayne Douglass will be walking around with 122 seeds in his body.
The seeds now are emitting high-dose radiation to kill the cancer in his prostate gland, where they're embedded. Eventually, the radioactivity will expire but the tiny seeds will remain.
"It's an amazing thing," Douglas thinks.
The retired Evansville merchant was told last April that he had prostate cancer. Because of his age, then 72, his doctor recommended against removing the prostate gland, which requires a major surgery.
That left Douglas with three options: The "watchful waiting: approach, external beam radiation, or the radioactive seed implants.
Douglas said his wife, Joyce, became his main researcher. She contacted the National Cancer Institute and asked for all the information it had on prostate cancer and treatment options.
Then the couple consulted their trusted longtime friend, a retired physician.
Their decision to go with the seed implants made Douglas a patient at the new Tri-State Prostate Cancer Center, established about seven months ago as a joint effort by some urologists and radiation oncologists. They pooled resources to buy equipment for a new approach to an old procedure.
The seed implants, also known as brachytherapy, were first used about 50 years ago but didn't work well because of what they were made of and how they were placed in the prostate. In the 70's, the procedure was improved by using radioactive iodine. But determining where to place the seeds was still an inexact process. There was damage to surrounding tissue, and the five-year cure rate from brachytherapy was far less that the cure rate from radical prostatectomy. So it was abandoned by many urologists.
But computers and high-tech ultrasound have now vastly improved the process, said Dr. Phil Gilson, urologist and medical director of the prostate center.
He said three-dimensional data from the ultrasound is fed into a computer that then tells the doctor "exactly where to put the seeds" for maximum dose without damage to the adjacent bladder, rectum and surrounding healthy tissue.
"We can deliver 2 1/2 times the amount of radiation tot he cancer itself that with traditional radiation, where you're limited by the bladder and rectum being in the way," Gilson said. "So we can do about 2 1/2 times the radiation without much side effects."
The procedure is performed as an outpatient treatment and with just local anesthetics. The patient come in first for a planning ultrasound," then returns two weeks later for the implant.
Douglas said for him, the implant was "a very, very simple thing. I was there about 3 1/2 hours. The seeds were in place and there was no pain whatsoever."
He had the implant on Oct. 4 About three weeks later he experience problems with rectal bleeding, which his doctors told him was not an expected complication from the implant, he said. But it cleared up in about five days and Douglas said he's "doing fine" now.
"I feel good," he said, "very, very good."
His latest PSA blood test - which measures the level of prostate-specific antigens that indicate the presence of cancer - came back in the "normal" range. The count had dropped to 1.6, down from a high of 15 before the implants, he said.
Douglas also likes the fact that he does not have to take any medications.
The improved implant process hasn't existed long enough to establish long-term survival rates, Gilson said. "But 10-year follow-up shows patients who have seed implants do just as well as those who have radical prostatectomy.
Will they be cancer-free in 15 years? We just don't know.
Very Treatable Cancer
Gilson says he tells men with prostate cancer, "Don't be afraid. If you have to get a cancer, this is the one to get."
It's a very curable cancer if caught early - in the early stages the cure rate is up to 80 percent - and it's very treatable cancer, he emphasizes.
"The key is early detection," which has been made possible by the PSA test that became widely reliable about 15 years ago.
Screening and treatment guidelines have recently been developed by a panel of experts from 17 of the nation's leading cancer centers, which make up the National Comprehensive Cancer Network (NCCN).
They recommend annual PSA blood tests and digital rectal exams for all men beginning at age 50, and earlier at age 40 or 45 for men in high-risk groups, including African-Americans and men with a family history of prostate cancer.
Although most prostate cancer occurs in men over age 65, Gilson said screening is even more important for men younger than that, "because younger men tend to get the worst cancers... The most aggressive cancer tend to occur in men under 60."
"Unfortunately," he added, "younger men are the ones least likely to come in for screening."
He thinks that's largely because of the "fear factor" over impotence and incontinence. "But with improved treatment today, we can deal with those complications..."
Gilson said much of the old data on prostate cancer was generated when all patients were lumped together - the 70-year-old man and the 50-year-old man. "But those cancers are very different."
"I think in the future we'll find there are two types of prostate cancer, one that is slow-growing and does not cause problems, and one that is aggressive. Now, we can't distinguish. We can only make educated guesses."
He said the "watchful waiting" that is often recommended for older men has been a valid treatment approach.
"Prior to the seed implant, all the treatments were bothersome and difficult to go through for older men," he added. "The seed implant allows a simple, effective outpatient surgery that provides tumor control and is tolerated well."
However, radical prostatectomy is still the "gold standard" and treatment of choice in many cases.
Gilson said men in their 50s "do very well now with surgery." The radical prostatectomy has been improved. Younger men have little problem with incontinence.
"Impotence rates are higher, but with a nerve-sparing radical prostatectomy (a newer procedure where surgeons spare the bundle of nerves on either side of the prostate gland), there's about a 50 percent chance of maintaining normal erection," he added. "For others, with treatment they can get an erection. The impotence we can't fix."
One of the speakers lined up this fall for the Man To Man Support group is a member Harold Knauss, who will tell of his personal search for unproven treatments after all the conventional therapies failed.
Knauss, 72, is taking the drug thalidomide in hopes that it will kill the cancer that has spread to his liver.
The local Man To Man group was the first in Indiana when it organized about five years ago, and is one of few in the nation that have continued to exist as long as it has.
Spillman said he was at a recent national conference on prostate cancer and was bombarded with questions about the local group, because health-care professionals in other communities are trying to get men to do the same thing women with breast cancer have done so well - organize, educate themselves, support each other and lobby for more research.
"Men just typically aren't good at sharing feelings and networking," he lamented.
But spouses of the local Man To Man members are no longer being left out ever-other month. They've recently formed a new group, Side By Side, to meet among themselves when the men are having their stag sessions.
"Prostate cancer, like any other cancer, becomes a family illness," said Spillman. "And with this disease, most of the couples have been married for a long, long time. The wives are critical partners in the treatment and recovery."
See our Man To Man schedule.