By Anthony Effinger
Aug. 8 (Bloomberg) — One day in Chicago, Dave Bigg is about to drink a few beers with his buddies and divvy up Cubs baseball tickets when his cell phone rings. It’s the doctor, and he doesn’t like what he sees. Bigg’s biopsy looks bad. The cells from his prostate are warped and buckled. It’s cancer.
Bigg can’t believe what he’s hearing. He’s 46 years old. He doesn’t look sick. He doesn’t feel sick. Hell, he feels great — he’s training for a triathlon. “It was like a punch in the stomach,” Bigg recalls.
Bigg phones his wife, Melissa. She’s about to have lunch with friends at the Cherry Pit Café, near their home in Deerfield, Illinois. She sits in her car and screams. Cancer? How can my husband have cancer?
“You can’t wrap your mind around it,” she says. “You look at this healthy, energetic guy, and you can’t believe it.”
This year, more than 230,000 men in the U.S. will get bad news like Bigg’s, according to the American Cancer Society. And, like him, these men will face difficult choices about what to do next. Out of the blue, a diagnosis of prostate cancer will throw them into the middle of a raging medical debate over how to treat this disease — or whether to treat it at all.
For some, the decisions they make will determine whether they live or die. For others, their choices will mean the difference between an active sex life and impotence.
One man in six in the U.S. will be diagnosed with prostate cancer during his lifetime, the ACS says. After age 40, the danger grows with each passing year. If you live long enough, the question becomes when, not if, you’re likely to get this cancer. Autopsies show that 30 percent of U.S. men over 50 have at least some malignant cells in the gland. For men older than 80, that figure climbs to 80 percent, according to the ACS.
Hard to Treat
Prostate cancer kills one in 34 men in the U.S. Virulent tumors often spread to the bone. More than 27,000 U.S. men are likely to die from prostate cancer this year, the ACS says. This form of cancer is more common in men than any other cancer aside from that of the skin. It’s more prevalent than cancer of the lung, which strikes one man in 13; of the colon, which hits one in 17; or of the bladder, which besets one in 28, according to the National Cancer Institute.
Prostate cancer is difficult to treat without life-changing side effects. The gland, which helps produce semen, is lodged deep in the abdomen, just below the bladder. It surrounds the urethra, through which urine and semen flow, and borders the rectum. The nerves that control erections lie along the prostate like delicate wires glued to a golf ball. Cut them, and a man becomes impotent. Sometimes, drugs like Viagra can help, provided at least one of the nerves remains intact.
Most prostate tumors are slow growing and, as cancers go, relatively benign. Some are fast moving and deadly. Doctors can’t always determine which are which.
“We have a difficult time telling which cancers are aggressive and which are not,” says Dr. Tomasz Beer, director of prostate cancer research at the Oregon Health & Science University Cancer Institute in Portland.
Statistically, prostate cancer is less lethal than many other forms of cancer. It accounts for 9 percent of U.S. cancer deaths, whereas lung cancer accounts for 31 percent, according to the ACS.
If the doctor says you have lung cancer, you usually have one course: surgery, fast. If he says you have prostate cancer, your choice may not be so apparent. Many men who learn they have prostate cancer are left wondering how to treat it. Surgery, radiation therapy, high-intensity ultrasound — those are some of the options. Another is to wait, watch and hope the cancer never spreads, a strategy known as active surveillance.
Choose surgery or radiation, and there’s a chance you’ll end up impotent. Wait and watch, and there’s a chance you’ll die.
Undergoing a prostatectomy, the surgical removal of the gland, meant impotence for about three in four men as reported in a study published in the Journal of the National Cancer Institute in September 2004. One man in seven was incontinent five years after the operation.
With radiation, the odds of impotence were about the same: 73 percent, according to this study. The incontinence rate was lower, at 4.9 percent. Top surgeons report outcomes that are much better.
Men who undergo treatment get no guarantee their cancer won’t return. As many as 40 percent of men relapse, says Dr. Bruce Montgomery, an oncologist at the Seattle Cancer Care Alliance.
Given all this, some doctors advise patients to do something radical in modern cancer care: Wait and see. Dr. Laurence Klotz, a professor of surgery at the University of Toronto, has been monitoring 231 men for about seven years. If their cancer gets worse, he treats them. About two-thirds of these patients are still waiting. Three have died of their disease.
Worth the Wait
Over time, about 1.5 percent of men who could have been saved with surgery or radiation but chose active surveillance instead will succumb, Klotz says.
“I have no doubt that we will lose the occasional patient who is curable,” Klotz, 53, says in an e-mail.
For most men, the chance of dying from prostate cancer is so small — and the odds of impotence and incontinence after surgery or radiation are so great — that active surveillance is worth the risk, he says.
How do you crunch all these numbers? Many men wind up plugging them into computer programs called nomograms — this many billionths of grams, that degree of cell deformity — to try to predict how lethal their cancer is and find the best treatment. They must ask themselves hard questions. Am I willing to risk dying to preserve my sex life? Can I afford to wait?
Bigg, who makes his living trading corn options on the Chicago Board of Trade, says he’s one of the fortunate ones. A blood test during a routine physical provided the first, vital clue that something was wrong. His blood showed elevated levels of prostate-specific antigen, a marker for cancer.
That first PSA test led to a second, which led to a biopsy, which uncovered a dangerous tumor. Bigg underwent a prostatectomy. In the months following his surgery, he had a little trouble controlling his bladder. He says he’s fine now.
Bigg says his erections aren’t what they used to be but that his sex life is good. Now, at 49, he is cancer free. “I was lucky,” Bigg says. “I didn’t have a choice.”
Men such as Will Weinstein, whose cancer wasn’t as severe as Bigg’s, must weigh conflicting medical advice and balance the risks and benefits of various treatments. Weinstein, diagnosed at 56, spent seven months interviewing 44 doctors before deciding on brachytherapy, which involves implanting radioactive pellets in the prostate. Ten years on, Weinstein, a former hedge fund manager who now teaches ethics at the University of Hawaii in Honolulu, says he can get an erection and control his bladder.
He says that if he got the same diagnosis today, he might try active surveillance, provided he could stomach living with cancer.
Jim Hurley, 53, has seen more than his share of this disease. Prostate cancer killed his father at the age of 72 and struck two of his five brothers. Both brothers have had prostatectomies, and both have survived. When his time came, Hurley, a plasterer from New Jersey, turned to the Internet and discovered high-intensity focused ultrasound. HIFU hasn’t been approved by the U.S. Food and Drug Administration, and some surgeons scoff at it.
Hoping to avoid impotence, Hurley flew to Canada for HIFU. He says he made the right choice: He can have sex and hold his urine.
Watching and Waiting
And then there’s Bill Lewis, 64. A former partner at McKinsey & Co., Lewis took what some surgeons call the most radical route of all: He monitors his condition with twice- yearly PSA tests and annual biopsies. That’s it. No surgery. No radiation. No HIFU. His cancer seems to have disappeared.
On the following pages, these four men share their private battles and intimate fears. They’re speaking out because other men will face what they have.
A fifth man, one who’s well known to Wall Street, shares his thoughts on cancer, too. His name is Michael Milken. The onetime junk bond king of Drexel Burnham Lambert Inc., Milken has raised more than $300 million for prostate cancer research. His Santa Monica, California-based Prostate Cancer Foundation is financing the search for new, more-accurate tests for deadly tumors. Until researchers find one, Milken, 60, urges men to get a PSA test.
These five stories tell a larger one. Within the U.S. medical community, sometimes within the same hospital, a debate is taking shape that may upend prostate cancer care. Doctors no longer agree on how to diagnose this disease or what to do about it.
In medical terms, the PSA test — which doesn’t test for cancer but rather for a substance associated with it — is sensitive and nonspecific. Translation: The test often lies. An infection or having sex before a PSA test can artificially inflate your result. The U.S. Preventive Services Task Force, a division of the U.S. Department of Health & Human Services, says PSA screening often leads to anxiety-provoking false positives and unnecessary biopsies. Neither the agency nor the ACS recommends that doctors require routine PSA screening. Some doctors do; others don’t.
Head in Sand
Dr. Patrick Walsh of Johns Hopkins University School of Medicine in Baltimore, who invented modern prostate surgery, says the PSA test saves lives. The U.S. death rate from prostate cancer fell 27 percent from 1991 to 2001 because more men are getting tested, says Walsh, author of “Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer” (Warner Books, 2001).
Bigg’s surgeon, Dr. William Catalona of Northwestern University Feinberg School of Medicine in Chicago, has performed more than 4,500 prostatectomies and is a vociferous proponent of early screening. In 1991, he showed that PSA could be used to screen for prostate cancer.
Catalona and Walsh say men should get their first PSA test at 40. “It’s such an easy thing to do,” Catalona, 63, says. “Otherwise, you’re sticking your head in the sand.”
Dr. James Talcott disagrees. A professor at Harvard Medical School in Boston, Talcott, 54, says PSA tests are so unreliable that men should avoid them completely. Talcott, an oncologist who studies medical outcomes, says he doesn’t get PSA tests and probably never will. (He says he does get regular rectal exams.)
PSA tests often prompt men to undergo surgery or other treatments that leave them impotent or incontinent, even when there’s little chance that prostate cancer will kill them, Talcott says. Talcott knows this view goes against the grain. “Early detection is like apple pie and motherhood,” he says.
Doctors are forever telling us to get checked for hypertension and high cholesterol. It’s hard to imagine a woman refusing a mammogram because she’d prefer not to know she has breast cancer. And Katie Couric underwent a colonoscopy on NBC’s Today in 2000 to raise awareness about colon cancer screening after her husband, Jay Monahan, died of that disease at 42.
Lewis’s doctor, H. Ballentine Carter of Johns Hopkins, says many prostate tumors are best left untreated. Often, cancers never leave the prostate, where they pose little threat, Carter, 53, says. “Fifty percent of the cancers we identify are low risk,” says Carter, who monitors 350 patients, including Lewis.
Active surveillance isn’t about ignoring prostate cancer, Carter says. He calls his program “expectant management with curative intent” to reflect his aim for a cure.
To Know or Not to Know
Many men would live just as long — and be happier — if they never found out they had prostate cancer, OHSU’s Beer, 41, says. Too many men are risking impotence and incontinence to treat tumors that may never kill them, he says.
“If you had a cancer that was never going to kill you, you’d be better off not knowing about it,” Beer says.
Prostate cancer doesn’t care if you’re rich or famous. The disease has struck Andy Grove, former chief executive officer of Intel Corp.; John Kerry, the U.S. senator and 2004 Democratic presidential candidate; and Rupert Murdoch, CEO of News Corp. Prostate cancer has killed Wayne Calloway, chairman of PepsiCo Inc.; jazz flutist Herbie Mann; Steve Ross, chairman of Warner Communications Inc.; and rock musician Frank Zappa. It claimed Earl Woods, golfer Tiger Woods’s father, in May.
No one knows what causes prostate cancer. Dr. Bill Isaacs, a professor of urology and oncology at Johns Hopkins, says men who are stricken relatively young probably inherited rogue genes from their parents. The faulty code predisposes them to the disease. If a man’s father or brother has had the disease, the odds that he’ll get it narrow to one in three, according to the ACS.
A high-fat diet may foster the disease, Carter says. Fats seem to prompt tumor cells to divide faster.
In almost all men, the prostate tends to swell with age. Sometimes the growth reflects what’s called benign prostatic hyperplasia, a non-cancerous enlargement of the gland.
Dr. Peter Scardino, chairman of surgery at Memorial Sloan- Kettering Cancer Center in New York and co-author, with Judith Kelman, of “Dr. Peter Scardino’s Prostate Book: The Complete Guide to Overcoming Prostate Cancer, Prostatitis and BPH” (Avery, 2005), says testosterone is the likely culprit.
Prostate cancer feeds on the male sex hormone. Until the 1980s, doctors castrated men to starve their cancers of testosterone. Today, they use drugs in severe cases to achieve the same results.
Bigg says he thought he was too young and healthy to get prostate cancer. Until he got that call from his doctor, in April 2004, Bigg says he never dreamed he’d be among those afflicted, even after his PSA readings came back high.
Bigg is quiet for a guy who makes his living shouting “buy” and “sell” on the floor of the CBOT. He’s 5 feet 11 inches (1.8 meters) tall, weighs 200 pounds and is barrel- chested from a lifetime of swimming. Bigg is bald, with a fringe of close-cropped hair. In profile, he looks a little like Bruce Willis. On the CBOT floor, he wears a lightweight blue trading jacket and carries a stack of folded papers with calculations for options prices — his “shopping list,” he calls it.
Bigg’s story begins in 2003. Melissa Bigg, now 52, had taken a part-time job at a local Starbucks, which offered better health insurance than the coverage Bigg was buying for the family. He went in for a physical, grudgingly. He’d seen a doctor once in the previous 20 years, for strep throat.
During the exam, the doctor drew blood for a PSA test. PSA normally leaves the prostate through ducts leading to the urethra. Cancerous prostate cells leak above-average amounts of PSA into the bloodstream. PSA is measured in nanograms, or billionths of a gram, per milliliter. For a man of 45, a PSA reading of more than 2.5 ng/ml is cause for concern, Walsh says.
Bigg’s PSA reading came back at 3.6. He says he wasn’t alarmed. He’d been biking hard to train for a triathlon, which he’d heard could inflate PSA numbers. “I was ready to blow it off,” he says.
Then, four months later, Dave’s younger brother Steve got wind of his PSA results. Steve happens to be a urologist. He told Dave to get tested again.
This time, Bigg’s results were even worse — around 4 ng/ml. Bigg’s doctor told him to get a biopsy, and he agreed. Working on the CBOT has taught him a few things. “I’m a believer in the trend,” he says.
In a biopsy, a doctor harvests cells by inserting an ultrasound probe into the rectum, along with a gun that shoots a hollow needle through the rectal wall and into the prostate. The needle returns a core sample of tissue about a half inch (15 millimeters) long. Most doctors take a dozen cores.
A biopsy hurts. “They stick a staple gun in your ass,” says Charles “Chip” Baird, managing director of North Castle Partners LLC, a Greenwich, Connecticut-based private equity firm. Baird, 53, had his prostate removed in 2004.
Bigg’s doctor sent the sample to a pathologist, who examined the cells under a microscope. Pathologists look for cells that are misshapen. The more deformed those cells are, the worse the cancer is. Pathologists assess the patterns and assign what’s called a Gleason grade, from 1 to 5. The score is named for Dr. Donald Gleason, the pathologist who devised this system in 1966.
A Gleason grade of 1 indicates the malignant cells are close to normal. A score of 5 means the cells are almost unrecognizable as prostate cells — a sign of severe cancer.
Most men have cells that fall into at least two categories, so pathologists add the grade for the most-prevalent type to the grade for the second-most-prevalent type for a combined Gleason score, or sum. Hence, a 2 is the best Gleason score (1 + 1), and 10 is the worst (5 + 5).
Because the first number in the Gleason score indicates the more prevalent cell type, you’re better off if the first number is the lower of the two. A Gleason 4 + 3 is worse than a Gleason 3 + 4, for example. In the latter, most of the cells are Gleason 3, not 4. As a rule, a Gleason sum of 6 or less means that the cancer is treatable. A sum of 8 or more suggests cancer cells have escaped the prostate.
Bigg’s Gleason grades were bad: 4 + 3, for a combined score of 7. When Bigg and his wife got home that day, they held each other. Dave called his brother and asked his advice.
“I told my brother, `If you don’t have surgery, you’re crazy,”’ Steve says. “Dying of prostate cancer is one of the worst deaths you can possibly have.”
Steve recommended Dave see Catalona at Northwestern, who removed the prostate of New York Yankees Manager Joe Torre in 1999. Steve Bigg had a connection, too. He’d trained under Catalona. “He’s the man,” he says.
Prostate surgery takes practice. Results vary from surgeon to surgeon, and it’s not always easy to get in to see a top doctor. No U.S. government agency or organization tracks how many of the patients a doctor treats end up impotent and incontinent. Patients have to trust what their doctors tell them.
Catalona says about 85 percent of his prostate surgery patients in their 50s can get erections afterward. Walsh at Johns Hopkins says men who come to him in their 40s and 50s have a 90 percent chance. “It can take a little Viagra,” says Walsh, 68.
Get It Out
Bigg told Catalona that he wanted the cancer out, whatever the cost. He says he cared more about surviving than he did about sex. He and his wife have two grown children, ages 22 and 18, and didn’t want any more, so Bigg didn’t bank his sperm. Men still produce sperm after a prostatectomy, but the sperm no longer reach the urethra, the canal that runs through the penis.
Bigg had to wait for the biopsy holes in his prostate to heal before Catalona could operate. “That’s the longest two months of anyone’s life,” Melissa Bigg says.
Bigg hit the pool, hard. Just before surgery, he placed second in his age group in the 100-yard butterfly in the Illinois Masters Swimming Association championships. He swam faster than he had in high school. “What’s scary is that you can feel so good and have this,” Bigg says.
Bigg went in for surgery on a Monday in May.
Men who opt for surgery have Walsh to thank. The first documented prostatectomy was performed at Johns Hopkins in 1904. For the next 78 years, the surgery virtually guaranteed that a man would never have intercourse again. Many became incontinent, and 2 percent died within 30 days from loss of blood. Surgeons didn’t know where the erectile nerves were. Nor had anyone completely mapped the veins around the prostate.
Then Walsh came along and traced the erectile nerves in stillborn fetuses, in which the nerves are easier to see. He also figured out how to tie off veins that lie along the prostate, limiting blood loss. In March 1982, he removed the bladder and prostate from a 67-year-old man with bladder cancer. Walsh had never seen a patient remain potent after the procedure. This man got an erection 10 days later.
Since then, Walsh has done 4,000 nerve-sparing prostatectomies. He says he’s never been bored. “There is much more variability to the male anatomy than there is to every golf course in the world,” Walsh says. A prostatectomy is major surgery and often runs five hours or more.
Halfway through Bigg’s operation, Catalona called Melissa Bigg and told her things looked good. Bigg’s cancer hadn’t spread. For the first time in months, she felt relieved.
Not Like 16
Bigg was discharged from the hospital that Wednesday. He wore a catheter for a week while his urethra, which has to be cut, healed. He took a month off from work to recuperate. For the first three months after his surgery, Bigg leaked urine when he screamed on the trading floor. Since then, he’s had no problems, he says.
Bigg and his wife say the surgery hasn’t diminished their sex life. “Erections aren’t what they were like when I was 16, but they weren’t anyway,” Bigg says.
“I have no complaints,” Melissa Bigg says.
Men whose cancer is less dangerous than Bigg’s must grapple with conflicting opinions and weigh the potential risks and benefits of various treatments.
When Weinstein, the former hedge fund manager, was diagnosed 10 years ago, his Gleason score was a moderate 6: 3 + 3. He concluded that his cancer didn’t pose an immediate threat to his life. Divorced and interested in a new relationship, he didn’t want to risk impotence.
Weinstein set out to learn as much as he could. He had the resources: After working as a managing partner at Montgomery Securities, the San Francisco brokerage that’s now part of Bank of America Corp., he became a financial adviser to the billionaire Pritzker family, which controls the Hyatt hotel chain. These days, Weinstein splits his time between San Francisco and Honolulu.
“I drove people crazy,” Weinstein says. “I spent seven months on the phone and on planes.” He still has the rainbow of colored ID cards from all the hospitals he visited.
Weinstein says some of the surgeons he talked to didn’t impress him. In a 79-page account of his experience that he shares with men who call for advice, he says one doctor talked to him on the phone for all of 15 minutes before recommending surgery.
Weinstein spoke to Intel’s Grove, who chose to treat his cancer by having radioactive seeds injected temporarily in his prostate. Weinstein says Grove told him that the survival statistics were skewed in favor of surgery because men whose cancer had breached the prostate — harder cases, in general — often ended up being treated with radiation.
Weinstein’s conclusion, after visiting 30 doctors in the U.S. and corresponding with 14 abroad: “There are 8,500 urologists in the U.S., and 8,200 don’t have the faintest idea what they’re talking about.”
Weinstein opted for permanent radioactive seeds. The seeds are actually titanium capsules the size of rice grains, with bits of radioactive iodine, palladium or cesium inside.
Radiologists image the prostate with ultrasound and then use a computer to figure out how many seeds they need to radiate the gland. As many as 150 are implanted, says Dr. Peter Grimm, co- founder of the Seattle Prostate Institute. They’re placed through a needle inserted near the scrotum.
The advantage of seeds, Grimm says, is that patients are on their feet the next day. Continence isn’t a problem because the internal urinary sphincter — one of two sphincters that control urination — isn’t removed, as it is in surgery. Urination can be frequent or urgent for a few months, but then it returns to normal.
No Magic Bullet
What’s more, 80 percent to 90 percent of patients who choose seeds are usually able to have sex afterward, Grimm says. Their erections are unlikely to be as good as they had been before. “There’s nothing perfect,” Grimm, 54, says.
Grimm and his partners were among the first to use seeds, in 1986. One of their early patients was Grimm’s father, Huber, in 1988. He had a Gleason grade of 6 and a palpable tumor. Almost 20 years later, Grimm’s dad is still cancer free.
One of Grimm’s partners, Dr. John Blasko, treated Weinstein. Everything went smoothly, Weinstein says. When a friend — the funniest person he knows — showed up afterward and started cracking jokes, Weinstein laughed so hard that one of the seeds dislodged and passed out in his urine. He found it in a screen used to catch such errant seeds and put it in a special radiation-proof capsule that Dr. Blasko had given him.
Weinstein says urination was painful and urgent for about six months. During that time, he traveled by private jet, rather than on commercial airlines, on business trips because he was afraid he’d get stuck waiting to use the toilet. He’d tell his limo driver to take back roads so he could stop to relieve himself.
One time, in Sonoma County, California, he asked to use the bathroom in a convenience store. When the owner refused, Weinstein walked out and urinated on the side of the building. Today, Weinstein says he’s cancer free, potent and continent.
Hurley had seen prostate cancer kill his father and ravage two brothers, and he knew he didn’t want to go through surgery. When his time came, Hurley, 53, says an operation seemed extreme. Hurley is 6 feet, wiry and, he says with a laugh, happily divorced. He says he wasn’t ready to risk surgery and not being able to have sex.
“Ripping it out of my stomach seemed like a radical thing to do,” he says. “It’s like blowing up a mosquito with a stick of dynamite.”
Trip to Canada
Hurley had to educate himself. “Before the diagnosis, I didn’t even know what the prostate was,” he says. He turned to the Internet and ran across HIFU. These machines use ultrasound powerful enough to destroy prostate tissue. It works like a magnifying glass focusing sunlight and is accurate to the millimeter. HIFU is popular in Europe and is currently undergoing clinical trials in the U.S.
When Hurley told friends he was considering a trip to Canada, where HIFU is approved, they said he was crazy. “You’d be astounded by the resistance,” he says.
Some U.S. urologists dismiss HIFU. “I think it’s a hammer looking for a nail,” Walsh says.
“It’s never been tested in a thoughtful clinical trial,” Scardino says. “They don’t have any good data. There’s a lot of marketing and hype.”
Dr. John Warner, medical director at Maple Leaf HIFU Co., a Canadian company that operates an HIFU machine in Toronto, says HIFU is the future. A urologist, Warner is no stranger to surgery. He’s removed 800 cancerous glands.
“It’s only a matter of time before this becomes state of the art in North America,” Warner, 48, says.
Not Much Data
Because it’s so new, fans like Warner have little data with which to promote HIFU’s effectiveness. A study by doctors in Germany, reported in the journal Urology, showed that 93 percent of men with tumors confined to the prostate had negative biopsies up to five years after HIFU treatment. Five years is a short time when dealing with prostate cancer.
Hurley’s urologist recommended surgery or radiation treatment. Hurley wanted more opinions. A health-care consultant in Seattle, a woman who had survived breast cancer, reviewed his Gleason scores and recommended HIFU, the treatment he’d seen on the Internet. “It sounded so humane,” Hurley says.
Hurley flew to Toronto on March 29, a Wednesday. He had a preoperative appointment shortly after he landed. Maple Leaf HIFU arranged for a room at the Westin. The next afternoon, Hurley went in. The doctors gave him an epidural to keep him still and a sedative to make him sleep. The procedure took just under 2 hours.
The following day, he had an exam and flew home to New Jersey. By Tuesday, he was back on the scaffolding applying plaster.
There was one complication. Hurley had to wear a catheter to keep his urethra clear of dead prostate tissue that might migrate there. Two weeks after that catheter was removed, a piece of tissue got lodged. He rushed to Overlook Hospital in Summit, New Jersey; tossed his truck keys to the parking valet; and waited for three hours in the emergency room, in agony from being unable to urinate.
Finally, a doctor inserted a new catheter. When Hurley left the next day, he found the valet had lost his truck. “It was craziness,” Hurley says “But it’s a small price to pay.”
Like Hurley and Weinstein, Lewis wasn’t about to let the doctors make up his mind for him.
A Rhodes scholar with a Ph.D. in theoretical physics, Lewis worked for U.S. Defense Secretary Robert McNamara in the 1960s, trying to figure out how the U.S. should spend money to win the Cold War. He later became associate provost at Princeton University. He joined McKinsey in 1982 and became head of the McKinsey Global Institute, the firm’s economic think tank, in 1990.
Up in the Air
When Lewis was diagnosed with cancer, he’d just retired from McKinsey and was writing a book about why some countries are wealthy and others aren’t. He and his wife, Jutta, had purchased land near Carmel, California, where they planned to build a house.
“All these plans were up in the air all of a sudden,” Lewis says. “It was quite a jolt.”
Lewis is the epitome of a man aging well. He has a head of gray hair, and he retains a lanky build that helps on the squash court. One of his biggest worries was that prostate cancer would change his sex life.
“Sexuality is very much a part of personality, and until that dies, I didn’t want to change my personality,” he says.
Lewis’s biopsy suggested his cancer was relatively benign. His urologist took 14 cores from his prostate, and only one hit cancer. His Gleason score was a moderate 6. The diagnosis, though better than many, left Lewis to choose among treatments, all of which had disadvantages. His doctor recommended a prostatectomy.
Lewis set out to learn all he could. He got out his kids’ old microscope and looked at slides of his biopsy tissue, comparing it with samples put on the Internet by Stanford University to see if he agreed with the pathologist.
He spoke with men who’d had surgery. He talked to doctors at the University of California, San Francisco, about new radiation techniques. Doctors in Florida told him about cryotherapy, in which the prostate is turned into an ice ball to kill the cancer inside it.
Lewis concluded that for him, the risk of incontinence after surgery was one out of three, and that the risk of impotence was about the same.
“The chances are two out of three that you’ll get at least one of them,” Lewis says. “That didn’t sound attractive.”
Then, in June 2003, almost a year after his first abnormal PSA test, his squash partner gave him a booklet by Carter at John Hopkins that had a section on active surveillance.
Lewis had heard about Carter’s program. He was impressed that a doctor at Hopkins, an institution known for its prostate surgeons, would be so interested in active surveillance. “He had the answer I was looking for,” Lewis says.
Jutta Lewis says she tried not to think about her husband’s cancer. She says she believed he would tease out the critical information and present it to her to discuss. “I trust him to do the best job anyone can do,” she says.
After three years of active surveillance, Lewis’s cancer seems to have vanished. “It hasn’t shown up in any of three subsequent biopsies,” he says.
Carter says as many as 30 percent of the men who are diagnosed with prostate cancer would be eligible for his active surveillance program because their cancers aren’t that severe. Today, just 2 percent of the men who come to Johns Hopkins with the disease enroll with Carter.
Of those who have signed up, 55 percent are still monitoring their tumors. A third of the men have exhibited changes that prompted Carter to treat them. About 7 percent became so uncomfortable knowing they had cancer in their bodies that they chose treatment even though their tumors appeared stable. No one in Carter’s program has died of prostate cancer.
Klotz at University of Toronto says he plans to recruit 2,100 patients to study active surveillance.
Looking back, Lewis suspects he had an infection in his prostate. His biopsy just happened to hit the trace of cancer that so many men carry around later in life, he says. “Our bodies have cancers coming and going all the time,” Lewis says.
Milken, the onetime junk bond king, has made fighting prostate cancer his life’s work. In 1993, when Milken was 46, he went for an overdue physical. He had just finished a 22-month prison term for securities fraud. He asked his doctor for a PSA test. Prostate cancer had just killed Warner’s Ross, a friend, and he wanted a test himself. The doctor told Milken he was too young to worry.
“Humor me,” Milken said. He has lost 10 close relatives to cancer, including his father (melanoma) and his mother-in-law (breast cancer).
The results were terrible. Milken’s PSA was 24 ng/ml, six times the level that usually prompts concern. Milken had a biopsy, and his Gleason score came back at a 9 out of 10. The bad news cascaded. The cancer had traveled to his lymph nodes. The doctors told Milken to get his affairs in order.
Instead, Milken did what many educated, wealthy people do: He networked. A friend recommended he see Dr. Stuart “Skip” Holden, a urological oncologist at Cedars-Sinai Medical Center in Los Angeles. Another friend, Dr. Neal Kassell, a neurosurgeon at the University of Virginia, suggested talking to Dr. Andrew von Eschenbach, then director of prostate cancer research at the University of Texas M.D. Anderson Cancer Center in Houston. Dr. Eschenbach was studying men who had cancer in their lymph nodes but not in their bones — Milken’s situation exactly.
Soon, Holden put Milken on hormone-deprivation therapy to starve his cancer of testosterone. Then he had Milken’s prostate and pelvic lymph nodes radiated over the course of eight weeks. Milken adopted a strict diet. He avoided saturated fats found in meat and began eating more soy. His PSA dropped to zero. Today, he’s still in remission.
“I wouldn’t be here today if it wasn’t for PSA,” Milken says, sipping a purple smoothie containing — among other things — pomegranate juice, soy protein, lemon zest, selenium, blueberries, vitamin E and green tea, all reputed cancer fighters.
His Prostate Cancer Foundation has given money to more than 1,200 researchers, many of them working on ideas that are too far out for other charities to support.
This year, the foundation reassessed its priorities and decided to focus on two things: finding a blood test or other biomarker that gives more clues about prostate cancer’s progression than PSA does and getting more drugs into human trials, especially for cancers that return.
“Where we have been really stuck is in effective treatment for men with recurrent disease,” says Leslie Michelson, the head of the Prostate Cancer Foundation.
All of the men in this story remain cancer free. Weinstein, like Milken, is trying to avoid a recurrence by watching what he eats. Weinstein has adopted a mostly vegan diet. He avoids fats, except for olive oil, and takes green tea extract, milk thistle, saw palmetto and selenium, all reputed cancer fighters.
Lewis takes selenium and lycopene, a substance found in tomatoes. He and Jutta built their house in Carmel, and Lewis finished his book, “The Power of Productivity: Wealth, Poverty, and the Threat to Global Stability” (University of Chicago Press, 370 pages, $28). They split their time between Washington, D.C., and California. The new house abuts wilderness, which Bill plans to explore. He still gets annual biopsies and twice-yearly PSA tests with Carter at Johns Hopkins.
Hurley got his first post-HIFU PSA test recently and it was a scant 0.2. His reading indicates that the cancer is gone. Prostate cancer can return years later, usually in the lymph nodes or bones, even after a prostatectomy. Nerve-sparing HIFU can leave some prostate tissue behind. The upside is that Hurley is continent and potent, no Viagra needed.
Ruby and Diamonds
Bigg is back in the pool. He was set to compete in the Masters World Championships at Stanford University in August.
Around her neck, Melissa Bigg wears a ruby encircled by diamonds. Ruby is Dave Bigg’s birthstone; diamond is hers. The necklace was a 23rd anniversary present from Bigg. He says the charm symbolizes how he felt during his battle with cancer: surrounded by her love.
Five men, five stories. No two are alike. Every man who confronts prostate cancer — and there will be many — faces decisions no one else can make.
“The medical community didn’t have a clear-cut recommendation for me,” Lewis says. “You have to take the management of your disease into your own hands.”
These men did, and so far, it’s paid off.
To contact the reporter on this story: Anthony Effinger in Portland, Oregon firstname.lastname@example.org
9 Replies to “Five men-Five stories-Five deicisions about what to do about one’s prostate cancer”
This was helpful and the stories have made it possible for me to make decisions in my case.
This is an inspiring document to read when faced with the same decisions as these guys. Thanks so much for posting.
Already had decided on surgery (robotic). I had many of the same feelings these guys had. It’s good to read and validate I’m not nuts but just as normal as most guys. Could use an update on success of robotic surgery.
Being an 71-year-old retired mechanical engineer and fraud expert and with recently discovered prostate cancer, my opinion is that the entire prostate treatment system is more of a money-making scam industry than a science. Every doctor I talk to has a different “solution” to my condition. HMMMM.
Get back to the disease. What was the rectal finding, the specifics of the path report-particularly the Gleason score and then the PSA. Plug that into Johns Hopkins Partin table. Once you have a feel for the aggressive nature of your cancer then you can begin to decide whether to pursue surveillance or a treatment. The money making concerns is just noise. JM
Having surgery with Dr William Catalona. He is now 73 years old and I’m wondering I’f I’d be better off with robotic surgery and a younger experienced robotic surgeon.
Yes go for robotic assisted laparoscopic radical prostectomy, with a surgeon who uses the Bocciardi method.
A prostate cancer patient survival guide by a patient and often a victim.
Men, avoid the over diagnosis and unnecessary treatment of prostate cancer.
Prostate cancer patient exploitation, testing and treatment dangers.
Revised February 16, 2017
In my opinion:
Read the hard facts about prostate cancer testing and treatment that no one will tell you about, even after it’s too late. This is information all men over 50 should have. Also, anyone concerned about cancer in general or privacy issues should read this text. Prostate cancer patients are often elderly, over treated, misinformed and sometimes exploited for profits. The testing, treatment and well documented excessive treatment of prostate cancer often results in devastating and unnecessary side effects and sometimes death. At times profit vs. QOL (quality of life).
Per some studies:
Studies have verified more deaths caused from prostate cancer testing and treatment then from prostate cancer itself.
Extensively documented unnecessary testing and treatment of prostate cancer because of profit or poor judgment by some doctors in the USA.
Medical mistakes are the third cause of deaths in the USA (over 251,000 deaths a year, over one million deaths in 4 years) more then suicide, firearms and motor vehicle accidents combined.
1 man in 6 will be diagnosed with prostate cancer in his life.
About 233,000 new cases per year of prostate cancer.
About 1 Million prostate blind biopsy’s performed per year in the USA.
6.9% hospitalization within 30 days from a biopsy complication.
About 1.3 to 3.5 deaths per 1,000 from prostate blind biopsies.
.2% deaths as a result of prostate cancer surgery.
60% had a prescription filled for an infection after a Biopsy.
Black men are at an increased risk of prostate cancer.
Prostate cancer patients are at an increased risk for fatigue, depression, suicide and heart attacks.
Excuse the generally accurate humor and sarcasm. Its intent is to entertain and educate while reading this possibly laborious text.
Prostate cancer patients are often elderly and exploited for profit, the treatments offered has horrible side effects, and newer treatment options are either unavailable or not offered to patients or available outside the USA. Prostate cancer is often slow growing and of low risk and can just be monitored. Often no treatment is the best treatment. Over testing and treatment has been verified by numerous experts, studies and investigations, documentation, etc.
If a surgeon is financially responsible for a building lease or a large staff or an oncologist is also responsible for a lease on 5 million dollars of radiation treatment equipment, do you think they would be more or less honest about the benefits and hazards of treatment? Do you think the profit margin would compromise some doctor’s ethics?
A 12, 18 or 24 core blind biopsies, holey prostate! Men with a high PSA tests result are often sent to an urologist for a blind biopsy. Men should be told about other options: Percent free PSA test, 4Kscore test, PCA3 urine test or a MRI test before receiving a blind biopsy. These tests can often eliminate the need for a more risky and invasive blind biopsy. Insertion of 12, 18 or 24 large holes (most of the time) through the rectum into a gland the size of a walnut, a blind Biopsy can result in (per studies) prostate infections, a risk of permanent or temporary Erectile Dysfunction, urinary problems, hospitalization and sometimes even death from sepsis (About 1.3 to 3.5 deaths per 1,000 from blind biopsies). There is also controversy that a biopsy may or may not spread cancer because of needle tracking. A blind biopsy can also increase PSA reading for several weeks or months, further frightening men into an unnecessary treatment. Blind biopsies are almost never performed on other organs. One very prestigious hospital biopsy information states: “Notice that your semen has a red or rust-colored tint caused by a small amount of blood in your semen”. Another large prestigious hospital states “Blood, either red or reddish brown, may also be in your ejaculate.” These statements are often an extreme exaggeration. Very often after a biopsy a man’s semen will turn into a jet black goo. This could be an unpleasant surprise for a man and especially for his unsuspecting partner. However if a biopsy is performed before Halloween or April Fools’ day this may be of some benefit to a few patients. If some very prestigious hospitals are not factual about the color of semen, what other information is not being disclosed or misrepresented?
Bone scan scam: Prostate cancer patients are often sent for a bone scan. A bone scan has about a 13% chance of having a false positive and only 3 men in 1,000 have bone cancer who have a bone scan. Bone scans may sometimes be unnecessary in lower risk prostate cancer patients.
Low risk cancer patients or patients with advanced age are often sent for aggressive treatment by some doctors when monitoring is usually a better option. An extreme example of overtreatment is one SBRT radiation clinical trial. Prostate cancer patients (victims) where intentionally treaded with a huge dose (50Gy total, 5 fractions) of radiation resulting in disastrous long term side effect for some of these men. A large percentage of prostate cancer patients in this clinical trial had low risk prostate cancer.
Clinical trials may or may not be hazardous to patients? The goal of a clinical trial is to gather information; the intent is not necessarily to help or cure patients. In a clinical trial, if someone is given a treatment that will harm them (as in the above example) or given a placebo in place of treatment or needed treatment is withheld, the patient may be deceived or harmed. Investigate before you participate in any clinical trial.
Privacy and confidentiality may be just an illusion: Prostate cancer patients are asked to fill out a series of EPIC questionnaires and other standard questioners. The EPIC questionnaire asks several intimate details about patient’s sex life, urinary and bowl function. By a prostate cancer patient completing an EPIC questionnaire may be able to assist his doctor, nurse or other office workers track his progress or decline. By refusing to fill out these questioners and supplying other unnecessary information one can help insure his privacy, dignity and insure he do not unknowingly become part of a study or clinical trial or other collective survey or have his information forwarded to multiple databases. He may be told these questioners and records are “strictly confidential” (as stated in most EPIC questionnaires); this statement is misleading. Most of the time a patient has no idea who has access to the records or why the records are being looked at. Who has access to medical records? Probably everyone that works in a medical office or building has access to the records. This may include/however not limited to non-medical employees, office workers, bookkeepers, janitors, insurance companies, temporary high school or college interns, etc. This may also include other medical facilities, programmers, hackers, researchers, etc. Often records are placed on a health information exchange (HIE), dozens, sometimes even hundreds or thousands of people may have access to the records. Some major databases like SEER are linked to Medicare records to determine “the final outcome” for researchers, studies, drug companies, etc. SEER is an appropriate name for this database! Your drug prescription history can also be tracked. Records may be packaged and offered for sale, this does happen. Your medical records can be downloaded to servers all over the world to countries that do not have any regulations for privacy. If a doctor, patient or insurance company is involved in a criminal or civil case, medical records may become public court or law enforcement records. If a patient has radiotherapy he may have a photo taken before treatment to verify identity. All patients should get a copy and read any confidentiality disclosures statements (HIPAA statements). Patients can also become the victims of financial or medical Identity theft. Under the HIPAA laws you are entailed to a copy of all your medical records, however if you try to obtain a copy of extensive records as in a hospital stay you may be met with resistance. Under the HIPAA law all other access to your records is a “Need to know” basis only. I recently went to a new optometrist for glasses and I was given a form that asked details about my heritage, including my mother’s maiden name and a form for my complete medical history. My family doctors office hires summer time high school interns with full access to all records. Would you like to have a high school or college student that possibly lives in your neighborhood or attends to school with your children read over your extensive family member’s medical records and personal information? How much curiosity or self control does a high school or college student have? I also went to a hearing aid center in a department store to get a free hearing test and was given forms inquiring about personal information and my complete medical history. This is information I do not want filed in a department store. All patients should avoid supplying unnecessary information whenever possible. Supply relevant information only. In the USA identity theft is very common, growing problem and is often financial devastating. Medical forms can be a good source of information for thieves. Recently my friend with arthritis in her hips received a letter offering a clinical trial for a new medication; coincidently looking for patients with hip and knee arthritis. How did this company determine she and not her husband was a prime candidate for this new drug study without violating any HIPAA privacy laws? Even without HIPAA privacy law violations, office records can be accessed by multiple people and appear in multiple databases. Your privacy and confidentiality is probably not that safe!
A patient’s dignity: Prostate cancer treatment is often degrading and demoralizing. EPIC questionnaires can be counterproductive impact a patient’s dignity, privacy, confidentiality, and self image. EPIC questionnaires probably have an increased potential and greater impact on patients for privacy violations because of its format, nature and personal content (potential for HIPAA privacy law violations). Patients may mistakenly believe the EPIC questionnaire is a requirement to be filled out. Also the term “strictly confidential” can be misleading and ambiguous. One blogger patient posted he filled out and turned in his “strictly confidential” EPIC questioners only to have every female office staff member read it and ogle him. Resulting in him not filling out any more EPIC forms or any other forms and he stated that he became very uncomfortable and evasive with the entire office staff. The drawbacks of this form seem to outweigh any potential benefit for some patients. Medical testes and procedures can be degrading and embarrassing for both men and women. Many women prefer or will only see female doctors or gynecologists, about 50% to 70%. Over half of men prefer a male doctor. (Per some respected doctors: Men stay away from medical care in large numbers because of privacy and dignity. Many men still avoid medical care because of embarrassment. Honest answers will often not be given if asked by a female doctor or nurse.) What percent of old men will feel comfortable consulting a female doctor, nurse or office worker about his prostate problems, ED, etc or would want an invasive test or procedure performed by a female?
The most common treatment options for men with prostate cancer are radiation, Brachytherapy, surgery, cryotherapy and hormones (ADT). Sometimes chemotherapy, immunotherapy and castration (orchiectomy) are used. A combination of treatments is often used. Most or all of these treatments have long term or short term side effects. Often men are not told about all of the true risks and side effects or they are downplayed for both a blind biopsy and treatments.
LDR Brachytherapy is permanent radioactive seed implant. This treatment procedure implants about 50 to 100 radioactive seeds in the prostate, sometimes resulting in urinary problems. The patient will literally become radioactive for months and up to 2 years. The patient may set off radiation alarm and also possibly metal detectors at airports. He will also be required to use a condom, have no close contact with pregnant women, infants, children and young animals or pets for months or longer. Occasionally he may even eject radioactive seeds during sexual activity or urination. The patient will become like a walking Chernobyl, having radioactive scrap metal and emit radiation from his crotch. He will also be required to carry a card in his wallet stating he is radioactive. The videos of this procedure seem to be disturbing and bizarre. However LDR Brachytherapy seems to have less sexual side effects than some of the other treatments available.
Men are sometimes prescribed hormone therapy (ADT therapy), AKA chemical castration as an additional or only treatment. Hormone (ADT) therapy is sometimes over prescribed for profit, per some studies. Hormone therapy is often very expensive (may be profitable for doctors if provided at the doctors office and not a pharmacy) and can have horrible, strange and devastating side effects, feminization, fatigue, weight gain, depression, etc. His penis could shrink and his testicles can completely disappear, he may grow breasts. This treatment can have so many mind and body altering side effects that doctors will often not inform patients about all of them. Men are sometimes castrated (orchiectomy) as a cancer treatment to reduce testosterone. Studies (Medicare and financial) have documented doctors do over prescribe ADT therapy for profit (depending on Insurance payout rates/profit margin). When insurance payment reimbursement for ADT decreased so did the number of patients being prescribed ADT therapy! Per Wikipedia: “in patients with localized prostate cancer, confined to the prostate, ADT has demonstrated no survival advantage, and significant harm, such as impotence, diabetes and bone loss. Even so, 80% of American doctors provide ADT to patients with localized prostate cancer.” Overtreatment is extremely unfortunate and avoidable.
Nerve sparing Robotic-assisted DaVinci surgery is touted as being a better treatment and having fewer side effects, this is usually an exaggeration. The nerves can not always be spared. Robotic surgery can result in a faster initial recovery. Long term risk of incontinence, fatigue, etc is about the same as conventional surgery, ED rates my possibly be a little better. Patients undergoing surgery are at a small risk of developing post traumatic stress disorder (PTSD) and about a 25% chance of long term or permanent fatigue. Also .2% risk of deaths as a result of prostate cancer surgery or medical mistakes. Patients are sometimes not told about the high risk of a shorter penis after surgery due to the shortening of the urethra. Patients can have unrealistic expectations about the results and regret the surgery treatment option. The ED rates and depression are often understated to patients.
Patients should not be naive: Medical mistakes are the third cause of deaths in the USA. Medical mistakes cause more deaths then suicide, firearms and motor vehicle accidents combined. Countless other patients have been harmed by medical mistakes. If you are having surgery, brachytherapy, a biopsy or a procedure take precautions if possible. Have someone qualified or knowledgeable monitor you and your medications, etc. Doctors, nurses and technicians can be profit motivated, use obsolete procedures, be lazy, incompetent, make mistakes and be apathetic or rushed. Occasionally harm can be done or not prevented with intent. Doctor’s offices and clinics can see many patients in a relatively short amount of time. This may be a disadvantage to patients, empathy and quality of care can sometimes be compromised. Sometimes a nurse, medical assistant or an office staff member may be the person that overseeing much of a patient’s cares. What are the main reasons nurses get fired: 1. Prescription drug abuse, 2. Too Many mistakes. 3. Code of conduct and privacy violations. 3. Bad attitude. 4. No proper licenses 4. Abuse of patients. Patients should be aware that sometimes QOL (quality of life) may be secondary or an absent goal in treatment. Sometimes overtreatment for profit or to prevent an unlikely death or metastization from low risk cancer may be the primary or the only goals of cancer treatment.
A blind biopsy or treatments are often worse then the disease: Resulting in Chronic/permanent fatigue, incontinence, depression and sexual dysfunction. Hormone therapy may have an extensive list of side effects that can be devastating for men. Biopsies and treatment are degrading, stressful and often unnecessary. Many men may not be prepared or have unrealistic expectations about the outcome, physical and psychological impact of testing and treatment.
The risk of long term chronic and permanent fatigue (that can result in depression) is almost always understated if mentioned at all to many patients. Per some studies and depending on your treatment; the risk of long term or permanent fatigue is about 25% to 60%. Radiation with Hormone therapy has a high risk of fatigue. Long term fatigue also increases the risk of clinical depression and suicide.
In my opinion: Castration, ADT hormone therapy (chemical castration), LDR Brachytherapy (radiation seed implant), radiotherapy, surgery and blind biopsies are often psychically and emotionally brutal, traumatic and disturbing. These types of treatments are primitive and almost beyond belief in today’s world of advanced technology. Newer treatments like, HIFU, hyperthermia, Boron Neutron capture therapy, focal Ablation (only treating the cancer and not the entire prostate) and orphan drugs should be approved and used when appropriate. Biopsies should be limited to selective MRI guided samples only; blind biopsies should seldom be performed.
Approved advances in prostate cancer treatment mostly consisting of newer more accurate radiation treatments, robotic surgery and new drugs. These advances sound like greater strides have been made. However most of these approved advances are of limited benefit to prostate cancer patients and still have about the same amount of long term side effects. Compared to other technologies, computers, communications, electronics, aviation, etc, cancer treatment approved advances have been dismal. QOL (quality of life) issues have not been adequately addressed. Profit sometimes outweighs QOL.
Prostate Radiotherapy (EBRT-external beam radiation therapy) for cancer treatment. New technology consists of: IMRT, SBRT, IGRT, VMAT, TrueBeam, Cyberknife, etc. This newer, faster, more accurate and easer to setup radiation equipment is of much benefit for doctors, staff and a good selling point to patient’s. However as far as reducing long term side effects, only small gains have been made with the newer radiotherapy equipment. A patient should be skeptical if exaggerated claims are made about reduced long term side effects, especially fatigue and ED rates. About 25% of radiotherapy patients can expect an alarming temporary “bounce” (spike) in the PSA value after treatment. Patients should inquire as to the treatment plan: Gy dose and fractions, margins, testicular dose, constraints and age of radiotherapy equipment to insure excessive radiation exposure treatment is not given that can result in additional side effects. Patients should be aware that pelvic shaving, small permanent tattoo markers, fiducial marker (small seeds) are sometimes placed in the prostate, MRI, CT scan, photographs, catheters and other procedures may or may not a be required. Radiotherapy can also occasionally result in secondary cancers and damage to “organs at risk” (organs close to the prostate). Radiation has high probability of sexual dysfunction and fatigue. ED rates estimated at 35% to 75% or higher. Sometimes radiation can also cause bowel and urinary problems. A 5 day SBRT radiation treatment is now commonly available with about the same results and side effects as a 9 week radiation treatment.
Sometimes radiotherapy can result in a 5% to 30% temporary or permanent drop in testosterone levels. Excluding hormone therapy, this drop is determined by the testicular radiation dose (treatment equipment and planning). A below normal drop in testosterone can result in increased fatigue, depression, sexual dysfunction and other symptoms.
It seems all of the best treatments for prostate cancer have not been approved and most are only available outside the USA. Treatment options outside the country or under development are HIFU, Laser, Hyperthermia, Boron Neutron capture therapy and orphan drugs, just to name some. Focal Laser Ablation is a good option with fewer side effects however it is not widely available in the USA and sometimes not practical.
Any cancer patient (man or woman) who are being offered chemotherapy should be particularly cautious. Chemotherapy can be extremely toxic and sometimes deadly. Without genomic testing or proof of the effectiveness of the specific drug being used on the exact cancer type being treated, chemotherapy can often be more toxic to the patient then to the cancer. Chemotherapy may be extremely expensive, profitable for some doctors (if dispensed by the doctor and not by a third party) and can be misused or overused, sometimes for profit.
Do you think any regulatory agency will stop the exploitation of elderly men with a high PSA or prostate cancer or approve new treatments at the risk of financially bankrupting thousands of treatment facilities and jeopardizing thousands more jobs? Do you think any regulatory agency will set guidelines for treatment and monitoring at the risk of upsetting the doctors who are over treating?
Often few good choices exist for treatment. A prostate cancer patient treatment choice often ends up being the least worst choice or the choice with the side effects a patient thinks he can tolerate. Patients can be sometimes misled about the expected side effects and results of the treatment being offered. The risk of chronic fatigue and depression is often never disclosed.
Long term care consists of regular PSA testing for years. Long term care for side effects is often lacking or exploitive or ineffective. Often complaints of side effects are disregarded by nurses, doctors and sometimes referred out to other doctors. The patient is sometimes left to figure out what to do about his side effects with the resources available to him. Long term side effects often consist of fatigue, bowel or urinary problems, sexual dysfunction, depression and other symptoms. Patients with complaints of chronic fatigue are often told to exercise, get plenty of sleep, pace yours self and eat a healthy diet; this advice is of limited help for chronic fatigue. Often treatments for long term side effects are embarrassing, degrading, unavailable, nonexistent, costly, not effective, not offered or bothersome. Prostate cancer treatment often results in fatigue, depression, isolation and sometimes suicide. Billions of dollars are profited from ED drug and other ED products, catheters, pads and diapers, drugs for depression or pain or insomnia or incontinence, additional treatments and surgeries for side effects. Also treatments for the multiple and bizarre side effects from hormone ADT therapy (chemical castration) is sometimes required.
Men and ageing: If any man lives long enough it is very likely he will have a prostate problem, low testosterones or some form of sexual dysfunction. In my opinion modern medicine often has been exploitive, abusive and has provided substandard care for older men in general due to all of the explanation given in this text. I believe much of the attitudes toward older Americans need improvement and they are sometimes viewed as being subhuman and exploitable by various individuals. If documented cases of unnecessary surgery and radiotherapy or blind biopsies on children by doctors for profit were released, the vast majority of Americans would be outraged and it would quickly end. However for older men it dose not seems to be of great concern?
Depression in prostate cancer patients is common, about 27% at 5 years (per some studies) and for advanced prostate cancer patient’s depression is even higher. Prostate cancer patients are at an increased risk of suicide.
Almost all prostate cancer treatments usually result a high percentage of erectile dysfunction. Loss of libido estimated at about 45%. Lower libido is almost never disclosed as a treatment side effect. Biopsies can sometimes also cause temporary or permanent ED. Often claims of prompt effective treatment for ED if it occurs after treatment are sometimes misleading. Statistics for ED percentages from treatment are usually quoted after treatment with Viagra, Muse or other ED treatments, therefore most statistics are very misleading. ED rated at 5 years may be as high as 50% to 80% or higher for most treatments. ED rated at 15 years may be as high as 90% or higher for most treatments. For cryotherapy, ED rates are extremely high. The cost for ED drugs like Levitra, Cialis, Viagra and Muse are kept very expensive by drug companies, about $10 to $45 per 1 pill. At these prices Lilly could consider including the bathtubs featured in its advertisements for Cialis. The cost of a 30 day supply of Cialis is usually well over $300 and the cost of an inexpensive bathtub is about $200. Many insurance companies will not pay for ED drugs or treatment. The patent for Viagra should have already expired in the USA. Less expensive generic drugs are usually unavailable in the US. Viagra should have already become available in a generic (in the USA) form for about $1 to $2 a pill. This is further exploitation by the drug companies of men in general. Men are further exploited by counterfeit mail order ED drug sales. ED drugs are not always effective and may have side effects. ED treatments can also be embarrassing, not offered, not practical, painful, expensive/not covered by insurance.
The numbers game: A doctor (and literature) may state a patients chances of ED is about 35% with EBRT radiotherapy or some other treatment. A patient may think, 35% is not too bad and if I do get ED I can always take Viagra. What a doctor may not tell a patient is that the ED rate is 35% at 2 years for a patient under 65 years old and with an ED drug treatment option. For a patient at 3 years, over 65 and no ED drugs the ED rate may be about 75% or higher. Obviously, a man is more likely to refuse treatment at a 75% ED rate verses a 35% ED rate. Some side effects may not be disclosed at all. If side effects (low libido, chronic fatigue, depression, etc) are not disclosed, no percentages will need to be quoted. Results are often worse for a surgery option, the main difference in ED results between surgery and radiotherapy is; with surgery ED will start out bad and may or may not get better with time, however with radiotherapy ED will get worse over time. With both together or with ADT hormones you’re in real trouble with ED percentages. Cure rates are often quoted at the 5 years mark for most treatments. A cure rate for a treatment at 5 years may be quoted at 85%; however the cure rate at 7 to 10 years may be only 70% and 50%. Always ask what is the “biochemical recurrence” (AKA rising PSA or treatment failure) rate for well beyond 5 years with your computer software simulation. Studies and clinical trials results, side effects percentage claims, etc can be biased. Watch out for terms like “age adjusted” or ambiguous or excluded facts as given in the above examples. I have read and have been given some extremely exaggerated claims concerning cure rated, side effects, etc.
In conclusion: Prostate cancer patients are sometimes elderly and exploited for profit (per documented studies). A blind biopsy is unsafe and newer test methods should be used. The treatments offered have horrible side effects. Some doctors are treating patients with low risk cancer or advanced age when monitoring is often a better option. Patience with low risk cancer or advanced age should often be offered “watchful waiting” or “active surveillance” instead of treatment. Aftercare for long term side effects is frequently ineffective, expensive, not offered, degrading or nonexistent. Prostate cancer patients are seldom told about chronic fatigue and the true risk of side effects are usually understated. Modern medicine often fails and victimizes prostate cancer patients.
If a patient has intermediate or high risk prostate cancer and dose not have advanced age he may need treatment. He should look into other advanced treatments if available. Also he should try and avoid hormone therapy if possible because of the multiple side effects. If advanced treatments are not available a 5 day SBRT radiation treatment may be considered (In my opinion, it could be the best of the bad choices). SBRT seems to be fast, least invasive or traumatic. ED and fatigue is still a high long term risk. Radiation with Hormone therapy has a higher risk of ED and long term fatigue.
The short version of my story: I was referred to an urologist by my family doctor after a high PSA test. I will refer to the urologist as Doctor “A”; he used old testing technology (18 core blind biopsies), his medical assistant seemed to have a mental defect exhibiting arrogant, rude and abusive behavior and was intent on inflicting psychological harm to me. Shortly after my Dr. “A” visits ended, his medical assistant was no longer employed at his office and no person in that office would refer to her employment or her existence. I was diagnosed with Prostate cancer by Dr. “A”. I refused his surgery and hormone therapy recommendation because of the eminent side effects and his unprofessional medical assistant behavior, so Dr. “A” referred me to Dr. “T”. Dr. “T” was outside of my insurance network; however his office manager stated she was willing to work with my insurance, offered me a doctor consultation and would accept any insurance payment as a full payment. When I arrived in his office the waiting room was empty. Dr. “T” used older conventional technology, offered me overtreatment, hormone therapy, unnecessary procedures and testes. One week after my consultation with Dr. “T” I received an $850 bill for the consultation, in conflict with what was agreed upon with his office manager. After a recommendation from a friend, I called Clinic “O” and met with the nurse. She offered me conventional treatments with a verbal guarantee of “no long term side effects”. However this nurse could not answer any of my basic questions, lacked any credibility and sounded like a used car salesmen. Most of these office visits caused me multiple problems with offices workers processing paperwork for tests, insurance forms and billing, etc. Two of these doctors offered me an unnecessary bone scan. Two of these doctors recommended hormone therapy (ADT Therapy). After I absolutely and utterly refused hormone therapy, both doctors admitted it probably would not help me in my final outcome because of the computer estimate run on me with my PSA, biopsy report, etc. Having no advance treatments (laser, etc) available to me at that time, I decided on treatment with Dr. “K”, he seemed honest and could answer my questions and had new equipment. Before my treatment could start I was referred to “W” lab for an MRI. “W” lab had a trainee assisting and it took over 2 hours to complete my MRI. 2 days later after receiving a copy of my MRI report, I examined the MRI report; it had my name and some other patient history information. I wasted 2 more days verifying it was the correct MRI of me and not some other prostate patient MRI before my treatment could start. Dr. “K” and his staff seemed competent and I did receive treatment from Dr. “K”. I did have a relatively fast and completely noninvasive treatment (SBRT), resulting in months of fatigue and some short term side effects. At this time I am doing well, however I’m not sure what the future will bring? I also no longer trust modern medicine, doctors, nurses, etc. Modern medicine seems to be more of a gamble then a science. I have wasted hundreds of hours and thousands of dollars. I feel modern medicine has abused and failed me due to the lack of guidelines and regulation, still approved obsolete technology, better unapproved treatments, exploitation, greed, apathy and incompetence. Hindsight is 20/20, I also believe I probably should have had no PSA testing or treatment. If I could do it over again, I would also consider no PSA testing and treatment or traveling for advanced treatments from a competent provider if practical and available. I believe if I did take the two doctors recommendations and received hormone therapy in addition to the radiotherapy my quality of life (QOL) would have been severely impacted for years or permanently and could possibly have resulting in my early death. I am not sure if my bad experiences are typical of today’s level of medical care or just bad luck in picking providers?
“Do no harm”, unless you can get away with it: I was harmed physically and verbally by Dr. “A” 18 core blind biopsy and verbally abused by his medical assistant. I was potentially exploited and financially harmed by Dr. “T” and offered unnecessary testing and overtreatment. Clinic “O” nurse attempted to misinform and deceive me about the treatment outcome of “no long term side effects”. I was harmed by “W” lab by mistakes and incompetence. I did also have numerous other billing and paperwork problems probably due to mistakes and apathy. At least 40% (probably substantially more) of the health care workers I came into contact with did or attempted to do some form of harm to me: attempted excessive testing and treatment, mistakes, billing overcharges, blind biopsy, false statements, deception, misinformation, apathy and abusive behavior¬¬¬-As explained in this text. I have also observed several medical facilities do not require workers to wear name tags; this may also be a factor in health care workers not acting in an ethical manner. It seems that this prostate cancer nightmare maze was intended for increased physical, psychological, financial harm and to be of questionable benefit.
My treatment choice: In my opinion, I feel LDR Brachytherapy and hormone therapy (AKA chemical castration) seemed to be completely degrading, disturbing and bizarre. Hormone therapy would not have been an effective treatment for me. Surgery and LDR Brachytherapy are to invasive. Surgery has an imminent danger of incontinence and ED. A 9 week EBRT radiotherapy was just to long and laborious. Because castration (orchiectomy), ADT hormone therapy (chemical castration), LDR Brachytherapy and blind biopsies are what I consider Frankenstein medicine (strange, bizarre, brutal, twisted or a perverted nightmare) I avoid all of them. Unfortunately I was deceived and misguided into having a blind biopsy. I do not believe other treatments like radiotherapy are good or greater choices either, just not as bad and acceptable at that time for me. The choice I made was a 5 day SBRT radiotherapy. A 5 day SBRT also has numerous drawbacks and side effects, about the same as a 9 week EBRT radiotherapy. I also had no advanced treatment options available to me. As I have stated above, If I could do it over again I would also consider no PSA testing and treatment or traveling for advanced treatments from a competent provider if practical and available. With prostate cancer, the testing and/or treatment is often worse then the disease. I am not implying anyone should make the same design as I did. I am only giving the motives for my decisions. I was also the victim of profit motivated and substandard providers.
Protect yourself: It should not be up to a patient to protect himself or herself from harm from doctors however the new standard in medical care now seems to be substandard. Do not let the sterile, friendly and professional environment of a doctor’s office detour you from protecting yourself from overtreatment or any unnecessary life changing tests and treatments. If you are concerned about misuse or privacy issues, refuse to fill out EPIC questioners and limit the information given to relevant information only. If you have a high PSA or prostate cancer, educate yourself. A patient should be extremely skeptical if exaggerated claims are made about minimal long term side effects from conventional treatments or blind biopsies. Bring someone educated or astute with you to your consultations and appointments. Avoid doctors that are mostly profit motivated. Do not submit to a blind biopsy if other options are available. Get a second or third opinion if you are being offered treatment with low risk cancer or have advanced age. Learn about all your treatment options, testing and side effects. Verify everything you are told. Under the HIPAA law you are entitle to a copy of all your medical records and bills. Always ask the name of the person assisting you. If they refuse the request for a name leave immediately (you may or may not be in extreme danger). Be very cautious if you are ever refused a copy of your records; demand a copy of your records and a reason for any denial and seek other advice. Get a copy and keep a file of your test results, biopsy report-Gleason score, PSA, MRI report, treatment plan, bills, insurance payouts, etc. Carefully monitor your PSA. Expect a temporary increase (for weeks or months) in PSA after some procedures. Verify the accuracy of paperwork. If treatment is necessary talk to your doctor in advance about side effect management, chronic fatigue, ED, Etc. Doctors that provide treatments often have computer software to predict the outcome using test results and different treatment options. Ask to see your computer predicted cure rate outcome with your treatment options if available. This may give you some insight to your options, cure rate and also to avoid overtreatment. Always ask what is the “biochemical recurrence” (AKA rising PSA or treatment failure) rate for well beyond 5 years. Contact a good prostate cancer support without a conflict of interest.
One more time: Multiple studies have verified more deaths caused from prostate cancer testing and treatment then from prostate cancer itself. Medical mistakes are the third cause of deaths in the USA (over 251,000 deaths a year, over one million deaths in 4 years) more then suicide, firearms and motor vehicle accidents combined.
Strict guidelines for prostate cancer testing and treatment need to be created and enforced because of the extensive and documented abuses of prostate cancer patients: 1. Blind biopsies should be banned. 2. Strict standards and gridlines for testing and treatment need to be created. 3. Full mandatory industry standard disclosure forms need to be created for tests and treatment to include realistic risk factor disclosure. 4. Newer testing and treatments need to be created and approved. 5. Dignity, privacy and confidentiality need to be standardized and enforced in addition to the HIPAA laws. 6. Aftercare needs to be available, standardized and regulated. 7. The cost for drugs needs to be regulated to end financial exploitation by drug companies. 8. Medical workers should be identifiable and be required to wear name tags with first and last names. 9. A new standard “Ethical Code of Conduct” needs to be created and enforced to end patient exploitation and abuse.
It is unlikely any of the above recommendations will be implemented unless prostate cancer affected a larger percent of the population or enough prominent people are affected. Prostate cancer patients must protect themselves, as the only alternative!
Clarification: The above text may probably anger and upset some people for various reasons. The intent of this document is not to imply all doctors are dishonest or to condemn all medical providers. The intent is to educate men and prostate cancer patients of the consequences and dangers that may await them so they can take appropriate action and to inform patients of real world, typical or worst case scenarios. I have also tried to include most scenarios a prostate cancer patient should be cautious of. Would some health care providers harm a patient for profit or by accident or some other reason? Yes, absolutely! We just don’t know who or what percent would. Shockingly for me it was will over 40% (probably 50% to 60%) that intended to do me some form of harm or provided substandard care as explained in my story. Are some other doctors and nurses exceptional? Yes! Differences in opinion, variations in semantics do not invalidate this document or its intent. The information in this document is a sum of my experience, other patient’s experiences and hundreds of videos, documents, books, conversations, clinical trial, blogs, studies, articles, etc.
Disclaimer: I have no conflict of interest. I have no affiliation with any support group or other organizations. I am not a doctor. I do not prevent, treat, diagnose, cure or advise on medical matters. The information above is for educational purposes only. If you need treatment or medical advice, consult a competent and trustworthy medical doctor.
Anyone may copy or distribute this document without changing or modifying it or its content.
“The thing about the truth is, not a lot of people can handle it” Conor McGregor.
I have been extensively criticized for creating this document. In order to insure my privacy and avoid any potential reprisals, further abuse or exploitation, I will remain Anonymous.
What would be your advice to the families of the 30,000 or so men who die of prostate cancer yearly?