They also describe pain—from sex and defecation—and grief, as they express feelings of loss, impact on relationships, regret and anger. "Rage is justified when doctors lie or withhold the real truth, the in-depth of what really happens to you," says one man who had his prostate surgically removed three years ago.
Prostate cancer is the male equivalent of breast cancer—except not many people hear about the Blue Ribbon Campaign.
Yet, a lot of people must know someone who's had prostate cancer. Every year, more than 46,000 men are diagnosed with the disease in Britain alone and more than 11,000 die of it. The American Cancer Society estimates that more than 161,000 new cases will be identified this year in the US and about 27,000 men will subsequently die, making it the second biggest cancer killer among men, behind skin cancers.
Weighing only an ounce and frequently compared in size to a walnut, the gland nestles under the bladder. It may be small and obscure, but the prostate is an important contributor to male sexuality. It's most busy during intercourse, when sperm are sent from the testicles to the seminal vesicles, mixed with fluid and then sent to the prostate, which releases its own enzymes, citrate, magnesium, calcium and zinc, bathing the sperm in a milky alkaline fluid to protect them from the acidity of their destination.
As a man ages, the gland may swell, so restricting the urethra like a clamp on a hose—which can send him on repeat visits to the men's room or racing to find a toilet.
Various conditions—benign and infectious—can produce these symptoms, but they may also be caused by cancer. But, as prostate cancer grows very slowly, there may be no symptoms at all. A man may die of other causes never knowing it was even there. And this is the heart of the controversy about screening and treating prostate cancer: how many lives does it really save? And how many men are harmed for each one saved?
In the early 1980s, prostate cancer screening was done by digital rectal exam to feel the gland for lumps and bumps, and men with symptoms underwent further testing. But, from 1987 onwards, doctors began to rely on a diagnostic blood test.
The gland makes 'prostate-specific antigen' (PSA) which, the theory goes, generally stays put in the prostate—unless there's cancer, in which case, PSA oozes out into the bloodstream. The higher the PSA score, the greater the chances that cancer is hiding in the prostate.
Except that it's not specific to the prostate after all. PSA is found in women's breast milk and other bodily fluids. Pregnant women's blood levels of PSA are high, and it's even found in amniotic fluid.1
In men, PSA test results don't necessarily mean cancer growth either. It may be raised because of gland enlargement or infection, or just from riding a bicycle.2
Doctors chose a reading of 4 ng/mL millileter, rather arbitrarily, as the dividing line between a 'normal' and 'abnormal' read PSA levels. Yet, prostate tissue biopsies compared with PSA blood results reveal that men with levels under 4 ng/mL could have the cancer, while those with scores over 4 ng/mL could be cancer-free.
One study that followed 2,950 men for seven years found that 15 per cent of them, who never had an abnormal PSA test or rectal exam, had prostate cancer,3 According to one small study only one man in four with a high PSA reading (4-10 ng/mL) actually had cancer on biopsy.4
For decades, many urologists believed that prostate biopsy was painless, but up to 96 per cent of patients disagree. In a 2001 study, one in five men said they would refuse to undergo the procedure again without anaesthesia.5 In the past decade doctors say it's been much improved, pain-wise, now that they do use anaesthesia routinely.
Normally, biopsy consists of having a dozen 18 gauge needles, about a millimetre thick each, sample from the gland. So many samples are taken to try to increase the odds of finding a cancer-ridden cell if cancer is present—in a kind of cancer lotto. It's like plucking 12 marbles out of a thousand to find a red one.
Different stages of cancer may exist in different samples in the same man, and these findings are added together in a sort of cancer sum called the Gleason score, which is supposed to give an idea of the overall picture of what the tumour will behave like.
It's close to a flip of the coin for accuracy, however. A study of around 1,000 biopsies compared with pathology reports of prostates later removed by surgery found a match just 58 per cent of the time.6 And here is still much debate about the accuracy of Gleason scores and how they impact men's treatment choices.7
Newer template-guided biopsy techniques are now available that take more samples—40 to 60 on average—and are more accurate but require both general anaesthesia and the use of alpha-blockers to relax the prostate and a temporary catheter.
These biopsies are also not free of side-effects. Blood in the urine and semen afterwards is common, and the reported risk of infection is 3.5 per cent and rising, with two times the risk of needing hospitalization, according to a recent US study.8 Biopsy patients are usually put on antibiotics to prevent this.
To treat or not to treat
Even so, men might take their chances and choose to undergo biopsy if there is any true chance of catching cancer early based on a PSA test. The trouble is, there is no evidence that finding and treating prostate cancer early actually saves lives, as it's usually so slow-growing and benign. Almost all men in their 90s have microscopic evidence of tumour—which clearly has not affected their longevity—and may be considered 'incidental'.
And an aggressive, fast-growing cancer, even if caught early by PSA, is not likely to be stopped by conventional treatments.
In 2009, a huge US study delivered a nuclear assault on the PSA test—or so it seemed. In a report of nearly 77,000 men after seven years of follow-up, there was no significant difference between screened and unscreened men in terms of deaths.9
On the other hand, a major study of 182,000 men (in seven European countries showed a 20 per cent reduction in death rates, but at the cost of over-diagnosis and over-treatment, which "are vastly more common than in screening for breast, colorectal, or cervical cancer".10
Yet another 2009 study found that, between 1986 and 2005, more than a million additional men were diagnosed with prostate cancer and needlessly treated by surgery or radiation11—and most likely lost their sexual function or bladder control as a result.
Put another way by Dr. Peter B. Bach, a physician and epidemiologist at Memorial Sloan-Kettering Cancer Center, men who undergo biopsy and treatment have about a one in 50 chance of being spared cancer that would otherwise have killed them within 10 years. And a 49 in 50 chance of being treated unnecessarily for a cancer that was never a threat.12
In fact, Richard J. Ablin, the professor of pathology at the University of Arizona College of Medicine who first discovered the PSA measured in the test, has himself declared the PSA test "The Great Prostate Mistake".
"So why is it still used?" he asked. "Because drug companies continue peddling the tests and advocacy groups push 'prostate cancer awareness' by encouraging men to get screened. Shamefully, the American Urological Association [AUA] still recommends screening, while the National Cancer Institute [NCI] is vague on the issue, stating that the evidence is unclear . . .
"I never dreamed that my discovery four decades ago would lead to such a profit-driven public-health disaster. The medical community must confront reality and stop the inappropriate use of PSA screening. Doing so would save billions of dollars and rescue millions of men from unnecessary, debilitating treatments."13 The AUA eventually did modify its stance in 2013 and now recommends "shared decision-making" for men aged 55 to 69 who are considering getting the test. And the NCI vaguely says that "a number of organizations have begun to caution against routine population screening" without offering its own position.
Prostate Cancer Canada recommends "baseline" screening for all men in their 40s. In the UK, the National Health Service (NHS) has adopted the "cautionary" approach of the AUA and tells men aged over 50 they can request a test if they wish.
While GPs are discouraged from ordering the test, the actual practice varies widely according to the doctor's belief in the test. A recent study found that 8 per cent of men attending inner -London GP clinics were tested, compared with 22 per cent in New Zealand, 35 per cent of Germany and 57 per cent in the US.14
The relationship between testing and treatment is reflected in prostate surgery rates: around 5,000 prostatectomies (operations to remove the prostate gland and seminal vesicles) are done in England each year compared with 138,000 in the US in 2010.
Prostatectomy, whether performed manually or, more commonly, remotely with robotic arms through a laparoscope and camera, is associated with high rates of sexual and urinary dysfunction: long-term erectile dysfunction affects 40-70 per cent of men post-surgery, while around 18 per cent of men report long-term pain on orgasm.15 Many men experience abdominal pain, diarrhoea or irritable bowel syndrome (IBS).16
Incontinence is also a regular feature in most men for at least six to 18 months post-surgery, but remains a permanent problem in just 2-4 per cent in patients. But that may be because doctors have invented new definitions of "continence".
"Now if you only leak drops and use one diaper a day, they call that 'continent'," one man comments in a post-prostatectomy chat room. The claim by medicine of a 98 per cent recovery from incontinence does conflict with a study that found that one in eight of 1,459 men who underwent prostatectomy experienced persistent bladder incontinence during intercourse, which doctors have given a new medical name: "climacturia".17
Untreated vs treated
Against all the known risks of prostate cancer treatment, there is a steady trickle of findings that men who avoid treatment fare just as well as those who get aggressive treatment.
A large-scale US National Institutes of Health study comparing annual screening with either no screening or only occasional check-ups found that men who are never screened are living just as long as those who get checked every year. Even men who are diagnosed with prostate cancer are as likely to be alive 15 years later as men who don't have the cancer. If they did die, it was more likely due to something other than the cancer, said the researchers.
In this study, 244 unscreened men died of prostate cancer—but so too did 255 men with annual check-ups—and more men (1,933) in the screened group died of other cancers than in the unscreened group (1,882).18
Researchers in Sweden found similar results: men who opted for 'active monitoring' were living just as long as those who chose aggressive treatment—but enjoyed a better quality of life.19
Similarly, a University of California at Los Angeles (UCLA) review of studies concluded that up to 40 per cent of prostate cancers are over-treated.20
And there's the rarely discussed fact that all this aggressive treatment fails in about a quarter of cases: recurrence rates are 20-30 per cent over five years, according to the Prostate Cancer Foundation.21
Watching it 'actively'
'Watchful waiting' is a "laissez-faire" option currently reserved only for those too old or frail to endure biopsies and treatment.
Increasingly men in Britain are encouraged to enter 'active surveillance'—a halfway house between watchful waiting and surgery—with magnetic resonance imaging (MRI), blood tests and biopsies to monitor the cancer, and treatment always an option.
Multiparametric (mp) MRI—functional scans beyond the usual anatomical ones, dubbed the 'manogram'—has been hailed as a game-changer for prostate diagnosis. Prostate Cancer UK compares it to mammograms because it can more accurately detect potential tumours. The National Institute for Health and Clinical Excellence (NICE) recommends it for routine use before biopsy to curb side-effects and fallout of panic treatment that results.
Yet, if manograms become routine, that may not necessarily be a good thing. Like mammograms, they may pick up benign tumours and push patients under the knife— even if it turns out they never needed it.
In general, more tests lead to more diagnoses, which lead to more treatment. The prostate cancer industry may be in for yet another boost—and men may have even more tales of painful regret.
Biopsy's ugly secret
According to a study by the University of Kansas, most men who undergo prostate biopsy have a significant decrease in erectile function, regardless of age, diagnosis or number of biopsies. Moderate or severe erectile dysfunction persisted in 24 per cent per cent of men who'd had no problems previously.1
Consent forms and information leaflets at NHS hospitals make no mention of erectile dysfunction as a potential side-effect.
The American Cancer Society and others claim there are few adverse events associated with radiotherapy. But a review of studies found "late toxicity" associated with repeated high-dose exposures, which presented as moderate-to-severe gastrointestinal effects in 17 per cent and the same kind of moderate to severe genitourinary effects in 20 per cent.1
Such effects, including incontinence, rectal bleeding and chronic diarrhoea, may take months or years to
According to the Prostate Cancer Foundation, radiotherapy leads to loss of erectile function in half the cases. What's more, it says, "few men will see much of an improvement and occasionally these numbers worsen over time."3
And because of cell mutations, radiotherapy also increases the risk of secondary cancers: by 68 per cent for bowel cancer, 62 per cent for rectal cancer and 39 per cent for bladder cancer.4
These risks tend to increase over time, with even more cases showing up a decade after the original exposures.5
Androgen deprivation therapy (ADT) lowers testosterone, believed to play a critical role in sustaining cancer growth by "starving" the cancer of this hormone.
But depriving men of this vital hormone is potentially lethal and increases the risk of cardiovascular events: men given ADT are 38 per cent more likely to have a non-fatal cardiovascular event, while those who have a heart attack are 57 per cent more likely to die of it, as are 51 per cent of those with a stroke.1
ADT can also decrease bone density and muscle mass increase weight gain and insulin resistance, slash libido and erectile function and shrink testicles, plus induce hot flashes, breast growth, anaemia and fatigue.2
On top of this gruesome catalogue, men given ADT are almost twice as likely to develop Alzheimer's as those not given it.3
One man's victory
A year ago, Ivan Misner's urologist told him he needed urgent radiotherapy to shrink his prostate cancer. The 60-year-old business entrepreneur had been diagnosed with prostate cancer four years earlier and his urologist also was pressing him towards surgery.
As the founder of BNI, one of the largest business networking group, Misner is not one to take direction without doing his own research first. He started investigating, even attending a prostate cancer conference, and heard stories of post-treatment incontinence and impotence—"the most depressing experience of my entire life," he says.
The idea of a radical lifestyle reset had not been on the agenda for the Diet Coke-swilling meat-eater who was also overweight at the time, but then Misner has always been one to see opportunity and challenge in crises.
He ditched wheat and sugar, fruit, starchy vegetables and processed food, and started eating brown rice, organic white meats, salmon and organic vegetables, and taking a phytonutrient-rich supplement called GC-18000.
Four months into the plan, ultrasound showed no trace of the earlier prostate cancer growth. His PSA3 test levels eventually fell to 13—well below the so-called healthy, non-cancerous level of 25.
Thrilled, he launched The Misner Plan as an e-book (www.misnerplan.com).
But last year, when Misner's PSA3 scores started to climb againlast year—way above the "safe" level of 4 to 13 on this special PSA test, his urologist was frantic.
Misner didn't hesitate and headed off to the Clinica CIPAG in Tijuana, Mexico, for treatments banned in the US, including injections of bovine immune cells, DMSO (dimethyl-sulphoxide, to make cancer cells more susceptible to therapy), glutathione, laetrile (from apricot kernels, also known as vitamin B17), multivitamins, sodium bicarbonate and vitamin C—all given intravenously. He also took clopidogrel (a blood-thinner) and fosfestrol (a hormonal chemotherapy agent), breathed in 100 per cent oxygen in a hyperbaric chamber to boost natural healing, took a thymus extract and Hoxsey's herbal treatment, and supplemented with vitamins A and D.
Misner's PSA3 fell again—this time down to 0.3. His urologist has finally let him off the hook. "Last month, he said everything seemed fine and I could come back in six months," says Misner. "He considers it a fluke."
Do it yourself
Cut red meat and dairy. Men who regularly eat fatty meats and cheese are more likely to develop an aggressive, often fatal, form of prostate cancer,1 while going vegan (no animal protein) is linked to a 35 per cent lower risk of cancer.2
Eat broccoli and cauliflower. The more you eat, the less likely you'll get prostate cancer.3 Those who eat the most cruciferous vegetables have a 59 per cent lower risk of cancer progressing.4
Try cooked tomatoes, which contain the anticancer carotenoid lycopene. High circulating levels mean a lower risk of prostate cancer.5
Get your vitamin C. The more you eat or supplement, the lower your risk.6
Suggested daily dosage: at least 150 mg through diet; intravenous is preferred; for best bowel tolerance, use liposomal (coated) versions
Opt for iodine. In Japan, a country with a diet high in iodine-containing seaweed, the number of deaths due to prostate cancer is 10 times lower than in the US.7 Michigan-based Dr David Brownstein claims that iodine levels are at record lows, while iodine supplementation is key for preventing prostate cancer, as confirmed by lab studies.8 Patients taking Lugol's (aqueous) iodine halted their cancer progression.
Suggested daily dosage: start with 50 mg
Consider curcumin. Numerous studies have shown that this extract (from the Indian spice turmeric) with quercetin for added potency induces prostate cancer cell death or inhibits their growth.9
Suggested daily dosage: 3-12 g of 100 per cent organic, 95 per cent curcuminoids (no fillers or excipients)
Try saw palmetto (Serenoa repens). With a long history of easing prostate inflammation, an extract of this plant has selectively induced natural cancer cell death.10
Suggested daily dosage: 320 mg high-quality oil (without 'berry' in the ingredients, as it's not the same)
Go for neem. In just 12 weeks, this traditional Indian Ayurvedic medicine significantly reduced tumours by 70 per cent and halved their rate of growth—at least in animals—with no adverse effects.11
Suggested daily dosage: 10-20 mL (2-4 tsp) x 3 (fresh juice)