I want my prostate back

BY LAURENCE ROY STAINS
PHOTOGRAPHS BY NIGEL COX

It’s June 20, 2008. I’m unconscious on an operating table and a robot is removing my prostate gland. In April, I learnt I had stage II prostate cancer and, after questioning experts and survivors, I’ve decided surgery is the way to go. Let’s get it done. My mother died of cancer, but not me. No way.

Now, two years later, I’m not going to say, “Thank god they caught it in time . . . I’m so blessed, each new morning is a miracle . . . blah, blah, blah, blah.”

No, what I’m thinking is more along the lines of: I want my prostate back.

Your prostate gland labours in obscurity. The size of a golf ball, it’s tucked away under your bladder, biding its time until you and your reproductive system decide to emit the sacred seed. Then the semen assembly line kicks in: the sperm swim up from your testicles to the seminal vesicles, and there they are mixed in a happy bath of fructose, vitamin C and prostaglandins. This brew then proceeds to your prostate, which tops it off with enzymes, citric acid and zinc before sending it on its way to its final destination.

Ah, glory days.

But around the time in your life when you start to think more about your retirement fund than your sex life, your prostate can start to misfire. It swells in size, and the swelling clamps your urethra in a vice grip.

If the cause of the swelling is benign, you’re lucky. But some of the same symptoms can also be caused by a prostate-cancer tumour.

Prostate cancer is the second most common cancer among men; only some skin cancers are more rampant. It causes long, slow, embattled deaths as the cancer spreads beyond men’s prostates to nearby bones, notably their spines. Once the cancer advances past your prostate, you have only a 30 per cent chance of surviving five years. But catch it early, before the cancer cells escape, and the five-year survival rate is 100 per cent.

Here’s the good news about prostate cancer: deaths are down because it is being diagnosed much earlier. In fact, 94 per cent of all diagnoses these days peg the malignancy at stage I or stage II, before it metastasises beyond the prostate. (Stage III cancers have begun to break out of the prostate; stage IV cancers have invaded nearby tissue and bone.) That has resulted in a steadily declining death rate. The declining mortality has generally been attributed to the widespread use – starting in the Nineties – of a simple test for the prostate-specific antigen, or PSA.

These days, the PSA test is so routine for middle-age men that your doctor might order one for you without even asking. Mine did in the middle of 2007, as part of a regular check-up.

Related: Get the facts on all the different types of cancer

Mostly he was worried about my cholesterol levels. The results showed mildly troubling cholesterol – but a very troubling PSA number. Standards in place at the time held that it should be less than four; some evidence has suggested that it should be less than 2.5 if you’re younger than 50. Mine was 12.6.

My doctor sent me to a urologist, who suspected that my high number was caused by a prostate infection. The only way to confirm those suspicions, unfortunately, was by collecting some prostatic fluid. The urologist sat there grinning apologetically as he held up one gloved and well-lubricated index finger and asked me to bend over a chair. Then he stuck his finger up my anus and pushed repeatedly on my prostate like it was a stubborn doorbell. About 10 minutes later, after I’d recovered, he gave me a prescription for an antibiotic and told me to come back in a couple of months so he could retest my PSA.

I really didn’t want to go back.

So I didn’t.

I put it off repeatedly until the night, months later, when I met the person I later called, only half jokingly, the Angel on the Train. I was sitting having dinner on an interstate train with my wife and son when suddenly a dishevelled old man tottered up the aisle carrying a little plastic bag full of pills. The steward swung him around and plopped him into the booth with us. Nobody said a word for 15 minutes. Awkward! Then I started talking to him, and before I knew it we were comparing prostates. My wife ratted me out: “He had a high PSA reading,” she said, waving her fork in my direction. “But he won’t go back to the doctor.”

The old guy turned to me. Establishing eye contact for the first time, he said, “You really need to have that checked out.”

When I returned home, I had another PSA test. It was 9.2. That’s better, right?

Well, as it turns out, nothing about the PSA test is accurate, starting with the name. The letters stand for a protein produced by the prostate. When PSA was first identified, the prostate appeared to be its only source, but since then it has even been detected, albeit in smaller amounts, in women. Clearly, there are non-prostate sources of PSA.

When your prostate is healthy, PSA is mostly contained within it, but if there is trouble in the tissue, more PSA can leak into the blood. By the time cancer has ransacked and spread beyond the gland, PSA levels can soar into the thousands. But the PSA test is so exquisitely fine-tuned that it picks up leaking PSA at the very lowest levels, measuring it in nanograms per millilitre of blood. That’s right: nanogram, as in one-billionth of a gram.

In practise, the common threshold of four nanograms per millilitre is rather arbitrary. You can have cancer even if your PSA reading is below four. That was definitively shown by a 2004 study of 2950 men who were followed for seven years as part of the Prostate Cancer Prevention Trial. These men never had a PSA level above four, or an abnormal digital rectal exam, for the entire length of the study. They all underwent a prostate biopsy – and cancer was found in 449 of them, or 15.2 per cent.

On the other hand, you can have a PSA reading above four and it could be caused by two common maladies: prostatitis, which is an inflammation usually caused by an infection, and benign prostatic hyperplasia, which is the fancy name for the benign swelling that plagues ageing glands.

ONCE THE CANCER ADVANCES PAST YOUR PROSTATE, YOU ONLY HAVE A 30 PER CENT CHANCE OF SURVIVING FIVE YEARS

Both can cause PSA leakage. In fact, most high PSA readings are due to these non-cancerous causes. Only one man in four with a PSA level between four and 10 will be found to have cancer after a subsequent biopsy.

So what good is this PSA test, anyway? Even its defenders admit, sheepishly, that it’s no pregnancy test. And its detractors say it’s useless. In 2004, a team of urologists at Stanford University in the US looked at pathology results of more than 1300 surgically removed prostates and found that the PSA number predicted nothing more than the gland’s size. The lead author, Dr Thomas Stamey, now retired, declared at the time, “The PSA era is probably over.” Which is noteworthy: Stamey is one of the inventors of the method used to prepare PSA for testing, and in 1987 he published the first study linking increased PSA levels to prostate cancer.

But nobody listened, and a lot of men continue to get biopsies they don’t really need.

April 11, 2008. I’m lying on my left side on an examination table in my urologist’s office. I’m here for a biopsy, but first comes the ultrasound. My doctor lubricates the ultrasound wand, which is about the size of my son’s Spider-Man toothbrush, and slides it into my rectum. All is well until he starts to muscle it into various positions to improve the camera angles; then it feels less like a medical device and more like a broom handle.

Can a biopsy be any worse? Yes, it can. He inserts a syringe into my rectum to inject lidocaine into my prostate – six shots, in six separate locations, and all I can say is, never have a prostate biopsy without serious sedation. But by the time my doctor goes back up there to grab his 12 tissue samples, I don’t feel a thing. I just hear the spring-loaded biopsy gun go off, bang, each time.

Five days later, the report comes back. Two of the 12 tissue cores are positive for cancer. I talk to people, even though the last thing I want to do is talk to people. Why are women so much better at this? They have “races for the cure” and that pink ribbon. A freakin’ logo for their cancer!

As for me, I just quietly call some strangers whose names have been passed along to me – by women, of course. One guy, John, had a biopsy that came back with only one per cent cancer in one core. But his father had died of prostate cancer, so after two years of “watchful waiting”, he finally went under the knife. I could opt for watchful waiting, but . . . waiting for what? For cancer to colonise my spine?

I have three treatment options: 1) surgery to remove my prostate; 2) external beams of radiation; or 3) brachytherapy, which involves implanting radioactive pellets in my prostate. Radiation treatments and their side effects can stretch out over months. I just want this to end. I’m in my fifties, so I’ll recover from surgery, no problem. I choose surgery.

The surgeon sits across the room at a console that looks like a video-game booth, manipulating a set of robotic arms over the patient. Unlike traditional surgery, there’s no 20-centimetre incision and not as much blood loss; instead, the procedure is done through six 2cm cuts in and below the navel. The best part, of course, is that the surgeon can be incredibly accurate, because he’s seeing the tissues magnified 10 times and controlling the arms to make microsized movements.

It’s June 18, 2008, two nights before surgery. I’m in bed with my wife and I miss my prostate already. I tell her that if and when we have sex again, there will be no ejaculation. Henceforth, I shall be seedless. You can see where I was going with this, can’t you? I was hoping I’d receive a happy send-off.

My wife says: “You should talk to your doctor about that.”

Gosh, thanks.

Here’s what patients think their doctors say: if you undergo the relatively new “nerve-sparing” prostate surgery, you will eventually return to the level of erectile function you enjoyed before you had the surgery. It may take weeks, months or a couple of years, depending on age and prostate size – but that mojo will return. That’s what patients want to hear, too, so maybe they miss the doctors’ qualifiers about “most men” and “in certain cases . . . ”

Unfortunately, that’s just not the truth, according to Dr John Gore, an assistant professor of urology at the University of Washington. “Even with a perfect surgery there’s going to be some shutdown.”

Gore is qualified to say this. He conducted one of the most recent studies of prostate-cancer patients and how surgery affects them. He and his UCLA colleague, Dr Mark Litwin, followed 475 prostate-cancer patients for four years. These patients received more scrutiny than the typical so-how’s-your-erection questions from their doctors. They filled out a 20-minute questionnaire in the privacy of their homes before surgery and at one, two, four, eight, 12, 18, 24, 30, 36, 42 and 48 months afterwards. And, no, things were not as they had been before.

“We’re not saying sexual function is terrible after surgery,” says Gore. “We’re saying the likelihood of that function being exactly what it was before surgery is essentially zero.” And, he adds, you’ll recover what you’re going to recover within two years. “Beyond that, it is what it is.”

Okay, so just how messed up are prostate patients? That question was answered by a nine-hospital study of 1201 men, led by Dr Martin Sanda, director of the prostate-cancer centre at Beth Israel Deaconess Medical Centre in Boston. Two years after treatment, radiation and brachytherapy patients complained most about urinary and bowel troubles; the 603 prostatectomy patients (93 per cent of whom had nerve-sparing surgery) complained more about sexual function.

To be blunt, 64 per cent of them said their erections were not firm enough for penetration (compared with 17 per cent who had erection trouble before surgery) and just under half did not recover erections suitable for sex. This is, remember, two years after their surgery.

“One problem is that doctors often don’t spend enough time with their patients to fully explain that sexual recovery typically takes years, not months, and often does not occur,” says Sanda. “Men might assume that as long as they can have a nerve-sparing procedure, their sexuality will be fine. In reality, nerve sparing provides a reasonable chance for erection recovery, but it by no means guarantees it.”

I’m not trying to pick a fight with urologic or cancer surgeons, or make them look bad, but rather to help prostate-cancer patients have expectations that are more realistic. “Patients live a long time after treatment and many die with, rather than from, prostate cancer,” explains Gore. “It’s critical that they participate in shared decision-making with their physicians, so they don’t come out of the process with regret.”

I had no regrets. At first. I spent one night in the hospital, and five days later I taught a three-hour class. Soon, I’d quit inserting pink panty liners into my boxers. And urination became a reclaimed pleasure: I could pee like a racehorse, just like in my teens.

As for what’s clinically called “restoration of sexual function”, here’s my official report: I dunno. My marriage was a mess, so you can imagine the amount of sexual healing that didn’t happen. But plenty of guys’ marriages are, you know, just okay. So I wonder: do a lot of wives think this is a great time to close up shop? How many other wives make it a habit to come to bed long after their husband is asleep?

I also wonder how much of the sexual wreckage is more than just nerve damage. Without any ejaculate, I feel like a broken toy. If love ever comes my way again, I’ll sort of dread it. I’ll be a spectator at my own sexual rehab, and we all know what that does for an erection.

While wondering whether I’d ever again gain a truly satisfying erection, I read everything I could about prostate cancer. Within weeks I was filled with remorse. In early August 2008 – less than two months after my operation — the US Preventive Services Task Force, the country’s leading independent panel of experts in prevention and primary care, said doctors should no longer screen for prostate cancer in men age 75 and older. At that age, the panel reasoned, the harms from treating the cancer outweigh the benefits.

This was a big deal: as recently as 2002, the panel was neutral on the topic. But the evidence of the last several years led it to conclude that the benefits of screening in the 75-and-older age group are “small to none” while the harms from treatment are “moderate to substantial”.

As a recent cancer patient, I was totally confused. Wait a minute, I’m thinking, this is cancer we’re talking about. If you don’t kill it, it kills you. Right?

Wrong. As it turns out, prostate cancer is “heterogeneous”, as the panel’s report puts it. That is, one man’s prostate cancer differs from another’s. Some prostate cancer is aggressive, spreads rapidly and will kill you. But screening tends to pick up the more slow-growing cancers. They can stop growing. You can live with them for years, symptom-free.

Some may even regress on their own, says one theory, without nuclear bullets or robot intervention. I’m not 75, but I still had reason to wonder: was my cancer the dangerous kind, or the benign kind?

Here’s the real problem with screening based on the PSA test: it can’t tell the difference! So why operate on a 76-year-old man who is more likely to die of something else? By age 80, most men have some cancer in their prostate. And the question is even harder to answer for younger men.

PSA screening is too good. The panel concluded that in the 75-and-up crowd, screening finds cancer that “will never cause symptoms during the patient’s lifetime”. Here’s a jarring thought: in 1980 in the US, a caucasian male’s lifetime risk of a prostate-cancer diagnosis was one in 11; today it’s one in six. Yet his chance of dying of cancer is lower, not higher. So we’re finding more cancer, with fewer fatalities. Just how much cancer is not worth finding? The panel wasn’t sure, but noted this: “Incidence data suggest overdiagnosis rates ranging from 29 to 44 per cent of all prostate-cancer cases detected by PSA screening.”

Almost eight months later, with my toy still broken and my heart breaking, I read the results of two huge trials that assessed regular screening – similar to what I received.

They were published in the New England Journal of Medicine (NEJM), accompanied by an editorial by Dr Michael Barry, a prostate-disease outcomes researcher and the chief of general medicine at Massachusetts General Hospital. His conclusion: “Serial PSA screening has at best a modest effect on prostate-cancer mortality during the first decade of follow-up. This benefit comes at the cost of substantial overdiagnosis and overtreatment.”
Overdetection. Overdiagnosis. Overtreatment. These are the new buzzwords of 21st-century cancer research – not just on prostate cancer, but on breast cancer, too.

Here are the particulars. In one of the NEJM studies, nearly 77,000 men from 10 US study centres were divided into two groups. Either they received an annual PSA test and a digital rectal exam, or they received “usual care”, which may or may not have included screening. After 10 years, there was no reduction in the death rate for the screened group.

The other study followed 182,000 men in seven European countries. The 73,000 men who were screened an average of every four years for prostate cancer underwent 17,000 biopsies and had a 70 per cent higher rate of disease. They also, not surprisingly, received much more treatment. According to estimates, 277 per 10,000 of those men underwent radical prostatectomy (versus 100 per 10,000 in the control group) and another 220 per 10,000 had radiation therapy (versus 123 per 10,000 in the control group). That’s a lot of treatment – with few lives saved. The study’s conclusion: if you aggressively screened 1410 men, and cut or irradiated 48 of them, you’d save exactly one man’s life.

PSA Testing in Australia

More than 16,000 Australian men, most aged over 50, are diagnosed with prostate cancer each year, and an estimated 3000 will die from the disease, according to the latest figures.

There is no mass routine screening program for the disease in Australia. The Prostate Cancer Institute and the Prostate Cancer Foundation of Australia recommend men aged 50 with no family history of the disease and younger men with a family history be tested annually using the PSA test and digital rectal examination (DRE).

The Foundation “disputes absolutely” the view that, because prostate cancer develops slowly and the side effects of surgery can be serious, it would be better for men not to know whether they have the disease and therefore should not be tested and treated. It believes early detection is the key to better outcomes and survival rates, and actively promotes awareness of prostate cancer and the widespread availability of PSA and DRE testing.

The Cancer Council Australia takes a different approach. The Council doesn’t support population-based screening of asymptomatic men, but instead backs a patient-centred approach, where the decision whether or not to be tested is taken by an individual after discussing benefits, risks, treatment options and side effects with their doctor, taking into account age and other risk factors.

A similar approach is taken by the Urological Society of Australia. It says that a PSA test in conjunction with a physical examination is the best available “flag” for the possibility of prostate cancer. “The PSA test does not diagnose prostate cancer,” says the Society’s president, Dr David Malouf. “It raises a red flag and identifies those men who need to have prostate cancer excluded through further investigation.

“This is done with a biopsy, and we know that the earlier we detect and treat prostate cancer, the better the outcome. The vast majority of men who undergo PSA testing will have a normal PSA and can be reassured by the result.”

The Prostate Cancer Foundation of Australia produces a booklet, Treat ED, which discusses the impact of prostate cancer treatment on erectile function. It is available to download from its website.

Were those my odds? I didn’t like those odds.

Did I need surgery or not? Because if I didn’t, I want my prostate back.

I’m in the hospital’s pathology lab to visit my prostate, or what remains of it. After my surgery it was sent here, where it was sliced up like prosciutto. Then 24 tissue slices, each just three millimetres thick, were stained bubblegum pink and made into microscope-friendly slides. We look at slide F4 because I want to see what cancer – my cancer, specifically – looks like. It doesn’t look like anything. It looks like the Blob.

“It’s actually not very interesting,” the pathologist is telling me. It’s just a ho-hum, garden-variety cancer. If I had left it in my body, she thinks it would have begun to bother me in another four or five years.

“Probably,” she says. She thinks for a moment, then tells me, “You made the right choice.”

The surgical pathology report on my operation notes that a 57-year-old white male received a robotic prostatectomy. Several specimens were examined, including surrounding fat tissue, vas deferens and seminal vesicles. All were cancer-free. Finally, the prostate itself arrived: 40 grams. With plenty of cancer to go around. There is tumour present on the left and right sides of the gland, in nine of the 24 sections and, most worrisome of all, it’s present at the margin of the prostate on the lower left side.

It’s given a Gleason score (the 10-point scale used to grade prostate cancer) of seven, which means it’s moderately abnormal. It’s staged at T2c (the T stands for tumour), the last stage before cancer begins to spread beyond the prostate gland.

I call someone who will know what it all means: Dr Eric Klein, chairman of the Glickman Urological and Kidney Institute in the US. He thinks I might have gone another decade without symptoms. But based on the grade and volume of the tumour, “I would say, yes, you definitely needed to have that tumour removed.”

In another decade, I’ll still be in my sixties. My father is 92.

I wonder what my urologist thinks; he knows my prostate better than anyone. After all, he’s the man who removed it. So I make my one-year follow-up appointment. Maybe he’s completely changed his position on prostate cancer. Maybe he’s prescribing herbal teas these days. Who knows?

My urologist sits down with me and patiently looks over my pathology report. Yes, there was a lot of tumour volume. Furthermore, it was on both sides of the gland. And it was at the margin of the gland in one spot. Then he notes a detail I’d neglected to tell Klein: the cancer was located at the bottom of the gland, a site where, according to a study at Vanderbilt University in the US, small margins of cancerous prostate cells commonly remain after surgery.

“By age 70, you would probably have had metastatic disease,” he concludes. “Or earlier.”

“Well, when would I have begun to feel pain?”

He’s silent.

“What are you thinking?”

He’s slow to answer. “I’m thinking, dying of prostate cancer is horrible,” he finally says. The cancer, once it spreads, causes immense pain. It can obstruct the bladder and everything else down below, so the patient needs to have tubes inserted. Multiple tubes. Requiring multiple hospital stays. And there’s the hormone therapy, which is so often in vain.

“If we could know whose cancer is going to progress and whose won’t,” he says, “that would be great.”

Great for him, I have the feeling, as much as for his patients.
He tries to be helpful. We talk about the odds of recurrence, and PSA doubling time, and various treatments, and what works best. But again, there’s nothing you can hang your hat on.
I tilt my head back and scream at his ceiling: “There’s nothing about prostate cancer you can hang your hat on!”

Except for this fact: nobody wants to die of it. So I guess it was a good thing my prostate was taken out.

My friend John is not so sure. Here it is, 18 months later, and he still has erectile problems, leaky bladder problems. Does he regret it? “A lot of times, yes,” he says.

As for you? I hope you or your brother or father, or one of your friends will not be among the unlucky many to receive a diagnosis of prostate cancer. And this year worldwide, enough men to fill seven 100,000-seat stadiums will get exactly that. Picture it: row upon row of silent men with full agendas and empty stares. And no place to hang a hat.