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MAY 11: PROSTABLOG NZ:  Anyone doubting the significance of the two long-term prostate cancer testing studies just published in the US need only read a NZ Medical Journal paper published late last year by leading Kiwi urologist Robin Smart.

He accurately predicted the studies “may or may not” resolve debates about national screening and making more information available to GPs and patients.

The studies have had mixed reviews, but, as Smart says, they add to a vast body of knowledge that overwhelmingly supports the value of PSA, digital examination and biopsy testing.

He laments a lack of technology and promotion of information about testing in NZ that could save up to half the 600 men who currently die of proistate cancer here each year, a figure that is static, compared to big improvements in Western Europe, the US and Australia.

He says our government’s antagonistic attitude to prostate cancer information dissemination puts us with the backward practices of Eastern Europe, where adoption of modern methods and testing (including PSA), has resulted in increasing death rates.

He points out that statistics quoted to rebuff calls for national screening are well below those accepted for NZ breast and cervical cancer screening programmes.

His conclusions (full paper available to NZ Medical Journal subscribers only):

“An overwhelming body of evidence shows that PSA/digital rectal examination testing leading on to TRUS (ultrasound) biopsy and curative treatments (where indicated) has been a major advance for men’s health.

Indeed, those with significant experience of dealing with men with this cancer in pre-PSA times appreciate the difference only too well.

Then, 70% had metastases at diagnosis and the mortality ratio was 41%.

Studying the fate of control group men in the various trials outlined above, especially those in Bill-Axelson and Holmberg’s trial, provides a chilling reminder of the potential for this cancer to ruin or end a man’s life in his later years.

It is true that these improvements in morbidity and mortality have come at a price of more investigation and treatment. Numbers of men diagnosed with prostate cancer have approximately doubled.

But this is the inevitable price for better results. The first-line investigations of PSA, DRE, and TRUS biopsy have been shown to be well tolerated and safe in an office setting.

It is important that men with insignificant cancer, or major comorbidity, or limited projected lifespan, get appropriate management, including surveillance only or other minimal approaches. It is also important that men with threatening cancers get these recognised in time for curative treatment.

A special group are those with a family history of prostate cancer. The usual lifetime risk of 12% doubles if one first-degree relative has prostate cancer and increases by 5 to 7 times if more than one has it.  Therefore, potential benefit of PSA testing includes not just the individual but also his family, and there is evidence that the outlook for family members is improved by PSA/DRE testing.

Before PSA testing, the outlook was worse for those with a family history compared to the general population but now it is better. This is considered to be due to a greater awareness and earlier testing by relatives of those with prostate cancer.

The dramatic improvements in morbidity and mortality from prostate cancer in Western Europe, North America, and Australia outlined above have occurred because a very large proportion of the middle aged and older men in those countries have undergone PSA and DRE testing.

The drive for this remarkable change has occurred at community level amongst men, their families, and family doctors on learning about this technology as a way to avoid advancing prostate cancer.

Governments generally have been neutral or antagonistic about PSA testing.

For example, the British National Health Service states: “Opportunistic screening (with PSA) should be discouraged” and the New Zealand Guidelines Group (NZGG) in 2004 stated several times in its information for practitioners that PSA “Not recommended as a screening test in asymptomatic men.”

New Zealand has not shared the improvements in prostate cancer mortality experienced by other advanced Western nations including Australia detailed above. Rather, our annual mortality has been static at about 600, similar to eastern European countries.

Large numbers (more than 2000) of men are now diagnosed with prostate cancer in New Zealand each year. But there have been powerful discouragements to men contemplating PSA testing and their family doctors resulting in uncertainty and confusion.

This includes not just the efforts of the NZGG, but also studies originating in the New Zealand Ministry of Health critical of general practitioners screening with PSA and DRE.

Many general practitioners are ambivalent about it as a result. Some have adapted by only referring on men with higher PSAs, for example 8 or more. This author’s experience has been that the most recent 300 TRUS Biopsies have a mean referral PSA of 11.1, and the last 100 radical prostatectomies—a mean referral PSA of 8.4.

Others actively discourage PSA testing and disseminate that view.

A common argument used is that 450 men must be screened to save 1 from dying of prostate cancer (a figure which is disputed)—and that this is too large to make screening worthwhile.

But the equivalent figure for breast cancer screening is 1700, and that for cervical cancer screening 8000. It seems likely that New Zealand men have not been tested as much, and perhaps sometimes been referred later (compared to men in Australia, North America, and Western Europe), to explain the difference.

Access to investigations and treatments may be poorer in New Zealand than the other countries, especially for the two-thirds of the population without health insurance.

Of course, most New Zealand general practitioners exercise great care in dealing with this issue.

The NZGG this year (2008) formed an ‘advisory group’ comprising representatives of the Prostate Cancer Foundation, radiation oncologists, urologists (including this author), the Cancer Society, the College of Pathologists, general practitioner, and Maori to formulate more information material.

The “non-Ministry” members of this group strongly favoured the NZGG providing men contemplating PSA/DRE testing with information about the advances discussed above, including changes internationally in prostate cancer mortality and trials. It was considered that men making such a decision at this time were entitled to this information.

The institution of a national screening programme was not advised, but provision of this information to men was.

But the draft containing this advice was rejected, the NZGG citing its contract with the Ministry and opting for neutrality. An opportunity [was] lost to improve prostate cancer results in New Zealand as has occurred in other countries.

To be fair to the NZGG, other government authorities internationally have adopted a similar neutral or opposing stance. And, as with any field of human endeavour, papers continue to be published expressing scepticism about PSA/DRE screening.

The long-awaited analysis of the ERSPC and PLCO trials, already put off from 2008 for a few years, and which have cancer mortality as end points, may resolve the debates. Or may not. There are many potential problems with these huge multicentre trials, not least of which is occult cross over from control to PSA groups. Initial results, as discussed above, support PSA/DRE testing.

The weight of evidence in favour of PSA/DRE testing is now overwhelming after almost two decades of international experience. To go back to the time before PSA testing would now be unthinkable.

Of course we hope for the perfect tests, perfect treatment, and continue to look for improvements. But New Zealand men today need the benefit of current technology which the evidence shows could save between 200 and 300 of the 600 who currently die of prostate cancer each year.

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PART 18 of My (Our) PC Adventure:  see the full story HERE>

lin01By LIN TUCKER

A few of weeks before Christmas, 2008, a very worried Jim told me that our GP had found some roughness when performing a digital examination of his prostate.

He’s the family worrier, so I went into reassurance mode with comforting words such as “found something early”, “stats in your favour”.

I must internalise worry, because no alarm bells rang: maybe it’s the two years of nursing training I did, so I understand the odds are usually in the patient’s favour.

Besides, Jim has had regular checks and his PSA reading was never high. Well, that’s what we thought then.

Fast forward to Christmas Eve: my niece from Canada has arrived to spend Christmas with us. Jim says he still hasn’t heard about his biopsy test results. I say “no news is probably good news. However, if you’re concerned, why don’t you call the surgery.”

He calls, and the nurse says yes, the results are back, but you will need the doctor to interpret them. A small tingle replaces the former insouciance I have been feeling.

Some time later, the doctor hasn’t called back, so Jim phones him and is told that the tests show cancer cells present, but the situation is not considered so urgent that it couldn’t have waited until after Xmas. An appointment will be made for him to see a urologist.

The cancer word is a bit scary, although Christmas and a vacation with an old nursing friend are enough to keep my mind from dwelling too long on any worst-case scenarios.

Jim doesn’t follow the accepted male ideology that you ignore symptoms; he is not shy about getting medical advice and for this I’m grateful. It means that as a partner I’m fully informed about the options, as – being a journalist – he will have done exhaustive research.

Knowledge is powerful as a tool for my peace of mind. If I can rationalise, I can cope.

I took him to the hospital for the biopsy prior to Xmas. Although the procedure is not entirely pleasant, Jim didn’t find it too much of an ordeal. But after the effects of the biopsy, which was quite invasive, he needed a bit of looking after.

Jim made another visit to the urologist just after New Year and returned with material to read and view, and a request to discuss it with me and make a decision about treatment.

At the end of January, I go with him for the treatment consultation. The urologist is young enough to be up-to-date, but old enough to have some gravitas, which is very comforting.
 
We’re informed that three of the 12 samples have shown cancer. On the positive side the cancer is not of an aggressive nature. 

The urologist mentions “margins”, where the cancer cells might have migrated to the surface of the prostate and affected other tissue. Not quite so straight-forward after all.

On balance, though, things are more favourable than not; I tend to concentrate on the positive.

Right from the beginning, Jim is keen on having a radical prostatectomy rather than brachytherapy. I’m a little worried that he’s making the decision on a cost basis, but the literature seems to lean that way. The urologist says he is a good candidate for surgery.

Jim can have the operation done at the public hospital by the same urologist, so we wait for a date. Hospital surgery waiting lists vary and Jim is hoping it will work out during his between journalism courses, a break when he can have plenty of recovery time.

His wish is granted – March 25, the day before his students graduate – oh well. 

By now we’re in early March and I’m given the “realignment” news at work. I’m numb: another team has also been disestablished. Work is a flurry of shock, questions, and a couple of weeks’ consultation period.

The following weekend, we’re off to New Plymouth to enjoy the wedding of Jim’s niece, Jaclyn. It should be a wonderful weekend catching up with his nephew’s newish son, family and friends and getting our minds off the pending surgery and redundancy.

The operation itself doesn’t worry me unduly. However, the risks of anaesthetic are very real and I’m feeling some disquiet, while trying not to show it.

The wedding day is wonderful, perfect even. The weather shines, the venue is fabulous, the bride’s mother and father behave well (their rift is still somewhat raw). Tensions are non-existent. Jacs is marrying an Australian and he has plenty of family and friends for support. The speeches are hilarious and heartfelt. The bride’s sister, Philly, makes a very warm and loving speech to her big sister. We leave at 11pm and they’re all dancing up a storm.

Next morning, we’re sleeping in when we’re woken with a message that Rob is trying to get hold of us: some accident…Philly’s seriously ill in hospital. We get to the hospital and find she is in an induced coma and they have called a helicopter to take her to Wellington, but they need to carry out emergency intervention!

We try to console each other, joined now in a wave of horror equal to the joy of the day before. It is all surreal. We take Rob’s wife home and keep busy with household chores, when we’re called to say the outcome is not good. We rush back to the hospital.

I stay outside minding the young ones, who are moving quickly into shock, recalling the morning’s events of hearing screams, Philly on the floor of the unit, having apparently fallen from the balcony above.

About 2pm, she is pronounced dead and we go back to Rob’s to prepare for the coming funeral in four days. The Aussies and guests silently file back to what was going to be a post-wedding friendly international cricket match. Instead, the wake starts.

The family tensions buried for the wedding quickly resurface under the stress. The estranged fiancé and his family are also in the mix; it’s not pretty. Eventually, we farewell the yellow coffin.

Due to the funeral, Jim has to change his pre-op check date, hoping he will not lose his place in the operation queue. I am hoping for this, too, as I don’t think I can stand any more waiting to get his situation resolved.

Away from the funeral-wedding, we start to prepare mentally and physically for the operation. When we go to town he walks home to Hataitai over Mt Victoria to get fit. I’m unable to concentrate much at work. 

Jim and I head for Wellington Hospital at 6.45am on Wednesday, March 25. He has a bag packed with PJs, clothes and toilet gear. We spend an hour or so in a small room with no windows where he changes into the sexy nightgown, socks and hat. No need for the contents of the bag – I take it home. Nobody gives clear instructions that you will spend the small time in hospital in their gear and won’t need clothes until you are discharged. 

A number of staff come in with their various checklists and tick off all the boxes, some for a second or third time. Part of me is glad they are being so careful and another part is just screaming “get on with it”.

We are then escorted up to pre-op, where he is put in a bed. More checks and a visit from the surgeon. I’m relieved when he promises to call me after the op, which should take three to four hours.

I wave Jim through the doors and set off home. We live only about five minutes away, and there’s no point hanging around the corridors.

I had intended to go into work, but there’s no point: my mind is mush. I go home and wait. About noon, one of Jim’s work colleagues calls. I tell her no news yet.

At 12:25pm, the urologist calls…relief, all went well and looks good. I figure that is code for no obvious signs of marginal cancer cells…hope I’m right. I let out my breath.

I have Jim’s cellphone, so I text all and sundry, call close family, and head back to the hospital about 3pm. It’s going to cost a fortune in parking fees.

He’s sitting up in bed looking morphine-sleepy. I don’t stay long, leave money for a morning paper, his cellphone with all the incoming well-wishing messages. It was good to touch him and know he’s okay

Next day, I come back at about 10am when visiting starts. He’s had a reasonable night, aside from bringing up the jelly he tried for dinner. We visit until lunch, then I leave. I go back to tuck him in late afternoon.

That night wasn’t quite so good, bit of pain. Next day it’s up and showering, the drain having been removed. He may come home tomorrow.

Yes, after the night from hell (including him wrenching the catheter tube out and wetting the bed thoroughly), having been moved from the “must-be-watched-closely cubicle” across from the nurses station to one around the corner, he is happy to be coming home.

Eventually we’re allowed to take him, and his spares home. I drive carefully, but Newtown roads are not in good shape. You would think streets and roads around a major hospital would be smooth.

At home, Jim is doing well and the first night we attach the extra catheter bag for the night and all goes smoothly.

We are lulled into a sense of false security. The next night, the valve joining the bags doesn’t work, so I’m changing a wet bed at about 3am. The following night I get to change it twice. Finally we get it right.

He gets the catheter out after six days. This process is very interesting, as this is a teaching hospital and I learn a lot. I take JT home with his “pad”. I’ve purchased a “dry sheet” for any accidents: I’m too old to be changing beds in the early hours of the morning. I sleep patchily as it is.

At work on Friday I get a call from JT at 3pm. He sounds in severe pain: “Come home, please. I need to go to A & E.” I make the fastest trip home. On the way to the hospital, he tells me how he came to be in that state. Feeling chipper he found that he was getting some penile action, so he tested it to the point of orgasm, which caused muscle spasm of the acute variety.

Oh no, I thought. I hope this doesn’t put his recovery back at all.

ED do their thing with so much pain relief an elephant would be downed. Then he’s finally able to pee and the pain stops. He can go home.

But this is not to be the last of his tribulation. That night he has trouble peeing and at 3am I get the car out of the garage (why do all these things happen at this hour) for another trip to hospital. Sorry darling, but I’m just so tired.

But then he passes a massive clot. Much relief, more mess, but the pain is over, and recovery resumes. 

Eventually, the blood in the urine passes, and normality (whatever that is) returns. 

Each day I come home, JT looks and seems to feel better. I am so enjoying his recovery. So far, so good.

NEXT: Spreading the news.

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May 1, NEW PROSTATE CANCER INFO-LINK: Results of a 14-year US study of 453 men with low-risk prostate symtoms has shown “active surveillance” – with selective, delayed intervention based on well-defined criteria of risk reclassification – results in very few prostate cancer deaths. From 2000, the cohort was restricted to men with exclusively low risk disease, ie, screen-diagnosed patients with no symptoms, Gleason score  ≤ 6, and PSA ≤ 10 ng/ml). Patients were all closely followed with serial PSA tests and periodic biopsies. READ MORE> 

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PART 17 of My PC Adventure (see full story HERE> )

Am I cured of prostate cancer?

I don’t know. The signs are already good, but I’ll just have to wait. I’m officially in limbo for the next 17 weeks.

I have no further appointments with the medical profession until late August, when I need to get a PSA blood test and then a few days later have a followup visit with the surgeon. Then we’ll know more.

It seems the magic “c” word is elusive. My prognosis is good, excellent even, but saying I’m cured is simply not possible, because this is a very complicated business.

About 30% of men who have a radical prostatectomy like I did will have what the profession calls “biochemical recurrence”.

Here’s the US Cancer Institute’s explanation of what that means:

A rise in the blood level of PSA (prostate-specific antigen) in prostate cancer patients after treatment with surgery or radiation. Biochemical recurrence may occur in patients who do not have symptoms. It may mean that the cancer has come back. Also called biochemical relapse and PSA failure.

How likely am I to be among the 30%?

Highly unlikely, it would seem. The reason is the cancer in my prostate was caught early, before it had time to surface at any of the margins of the organ, which is the bad thing that can happen as the cancer grows.

Once there are “marginals”, there is the chance of the tumour spreading into lymph nodes and the nearby seminal vesicles.

Here’s how MedicineNet.com defines seminal vesicles:

Seminal vesicle: A structure in the male that is about 5 centimeters (2 inches) long and is located behind the bladder and above the prostate gland. The seminal vesicles contribute fluid to the ejaculate.

Wikipedia says this about lymph nodes:

A Lymph node…is an organ consisting of many types of cells, and is a part of the lymphatic system. Lymph nodes are found all through the body, and act as filters or traps for foreign particles. They contain white blood cells. Thus they are important in the proper functioning of the immune system.

So, if you get cancer into nearby parts of the body like the vesicles or into the lymph system – and thereby spread through the body – the chances of advanced cancer increase.

There are drug and radiotherapy treatments for such eventualities, but the chances of long-term cure are proportionately lower.

Why am I waiting 17 weeks for the PSA test, and why is it done after the cancerous prostate has been removed?

To rehearse some earlier facts from my case, my PSA levels have never been high. The test prior to diagnosis showed .77, when up to 4 or 5 would have been acceptable for my age.

I have a friend whose PSA has been rising and is now about 20, but three biopsies have failed to find any sign of cancer. In my case, low PSA did not mean I did not have cancer (I did).

The wait is to allow my system to settle down, since surgical intervention can release the antigens into the system and temporarily raise the PSA in a way that is not helpful to diagnosis.

After five months (the operation was on March 25), that all should have settled down and an accurate reading should be possible.

What are we hoping for? Well, a nil result. Zilch. That would mean no biochemical recurrence…and no cancer.

The other thing in my favour is the low Gleason grade given to my tumour: at 6/10 it is the lowest meaningful result used. That means the cancer was of a low aggression type. It would have taken years to migrate out of the prostate.

So. I’m hopeful of the nearest thing to a cure you can get.

No doubt I’ll need to continue with the PSA tests for a few years just to be sure. Biochemical recurrence can occur some time after surgery. But in my case, it seems unlikely.

Here’s hoping…

A recent web item said spouses and partners end up more worried about cancer recurrence than the patients. So it’s time to find out what Lin thinks of all this.

NEXT: Another side to the story

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NEW PROSTATE CANCER INFO-LINK: Men who have a series of biopsies and their Gleason score changes are not necessarily at greater risk of prostate cancer, says a study of 366 men over nine years. READ MORE>

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PROSTATE CANCER WEBSITE: Men who have a prostate cancer of small size, who have a low PSA, and who have a low Gleason score are more likely to have slow-growing prostate cancer than men who have a prostate cancer of large size (or that has spread outside the prostate), who have a high PSA, or who have a high Gleason score. READ MORE>

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PART 15 of My PC Adventure (read full story HERE> )

“It’s good news…” the surgeon begins.

After that, his words are a blur.

When you’re a cancer patient and you’re taking a phone call from the doctor about your test results, you’re not really going to hear much beyond that wonderful opening line.

It’s a Monday morning, 12 days after my radical prostatectomy, and surgeon Rodney Studd is relaying details of the lab analysis of the cancerous prostate he’s removed:

  • The cancerous cells weren’t near the margins of the organ (which meant they weren’t touching anything else and thereby spreading);
  • They were non-aggressive – a lowly 6/10 on the Gleason scale.

That’s two out of three, he says. Good news, indeed.

Erm…the third thing?

Ah yes, the PSA blood test I need to have a few months after the operation when there has been time for everything to settle down.

If that shows negative, I’m good to go (although I will need to be monitored in future to make sure nothing in there is changing).

It’s time to celebrate, even though his call follows a tense weekend as the after effects of my little accident the previous Friday begin to subside.

Blood and clots cleared quite quickly and my urine is clear again, but it’s hard to rid my head of the thought I’ve done some permanent damage.

Rod’s call certainly helps. I need to spread the news.

Lots of phone calls and text messages later, I’m exhausted and sleeping. When Lin gets in from work with a bottle of Bollinger, I can manage half a glass before dozing off. Some party.

The week plays out anxiously.

By Wednesday, blood drops have returned to the urine. However, it’s oldish looking blood and it’s watery, so perhaps my system is just clearing itself out. Lin consults Dr Google, who tells her this is a natural occurrence.

I want to call someone, but it’s Easter.

I try to get myself moving about more. My first proper walk is all of 100 metres down to the bus stop and back, and it goes okay, duck-shuffle though it is.

Next day I go up the street to the other bus stop, twice the distance away, and in my enthusiasm start to walk quite quickly, forgetting I’m supposedly an invalid.

Then I hang out the washing. I sit at the computer and hammer out a blog. The bleeding gets a bit worse.

Have I overdone it? Hell, I wish I knew.

blood3On Tuesday, I shoot an email off to Rod with a still picture attached showing the colour of my urine.

I leave a message for Wellington Hospital urology nurse Bob Hale.

Bob gets back first. No problem. It’ll happen for a while. Don’t worry.

Rod emails back and says the same thing, and compliments me on the strong urine flow in the picture, which he says I must have taken one-handed.

I relax a bit. As they predicted, the blood gradually disappears, and is gone altogether by the weekend.

scar-after-18-daysAfter 18 days, my scar has healed beautifully and the only sensitivity I have is from the gens, which are still slightly swollen.

I use a horseshoe pillow on the computer seat to give a bit of clearance.

Then another problem arises – the dreaded incontinence.

So far, this hadn’t been an issue. But, mysteriously, when the blood disappeared, I suddenly found I was having trouble holding it back whenever I climbed up from the sofa or a chair or out of bed.

Right – get back to the pelvic floor exercises, which I hadn’t been able to do for a while because of the raw feeling in my groin.

The feelings of leaking slightly last just a few days. Then, everything seems to be back under control.

I sleep six or seven hours without having to get up to pee. This is helped by taking my blood pressure pill – a diuretic (piss-inducing) – in the mornings.

I try my first can of Heineken. Nectar. But just one a night.

The walks get longer.

The autumn weather has been superb for Wellington, calm, sunny, warm, perfect for perambulations around the block. I shed the slippers for proper shoes. I’m even trying hills (small ones – Mt Vic will have to wait).

I wish we had a dog. I feel like an old perv on the prowl. I start carrying my camera on my shoulder, which at least makes me think I’m walking slowly with obvious purpose.

Here’s one of the results – a beautiful day down at nearby Evans Bay. It’s nice to have time to look at things properly.evans-bay-12

I’m on the mend. For sure.

NEXT: Sorting out the other thing.

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