A deadly unfashionable disease

Stan Clark lost his wife Evelyn to bowel cancer at the age of 67. He now worries for his two sons. Photo / Kenny Rodger

If they detect it early, your chance of surviving bowel cancer is good. Ninety per cent in fact. Detected late, the picture's bleak - just 10 per cent of survive beyond five years.

This clear contrast is what Stan Clark struggles with over the loss of his wife Evelyn, a woman whose life could conceivably have been saved if New Zealand had a bowel cancer screening programme.

"In 2003, she had a chance of a cure if the disease had been found. Three years later, she had none at all."

Evelyn Clark, 67, of Pukekohe, died in February from a large tumour on her liver, which had spread from her bowel. They found a large cancer in her bowel in December 2006.

She had had some abdominal symptoms for a long time, but it was major changes in her bowel habit - often one of the first symptoms people notice - which prompted medical investigations.

She had surgery to remove the bowel tumour, chemotherapy and a second operation to remove several tumours that had, by then, been detected in her liver.

But it was too late. More tumours showed up in her liver and in her lungs. Another round of chemotherapy followed. It didn't help.

Stan Clark, a 69-year-old commercial celery grower, believes Middlemore Hospital should have checked for bowel cancer when his wife was a patient there in 2003 for a vague condition - she had felt unwell - ultimately attributed to fluid around the heart, possibly caused by a viral infection.

The hospital says there was no reason to check for bowel disease because she had no symptoms.

But if the national screening programme now being devised had been in place, Evelyn Clark's disease could have been picked up in its early stages, when it is most effectively treated, putting her in the 90 per cent camp.

New Zealand has one of the world's highest rates of bowel cancer incidence and death.

It is the country's second most common cancer for men (after prostate cancer) and women (after breast cancer). About 2700 new cases and 1200 deaths are reported each year.

Researchers writing in the latest edition of the New Zealand Medical Journal have confirmed what specialists know: a relatively low number of New Zealand bowel cancers are detected when the disease is localised. This is when the disease is surgically curable because it has not yet spread outside the bowel.

In a six-country comparison, New Zealand, on 28 per cent, was ahead of only Saudi Arabia. Britain (the best, at 42 per cent), the United States, Hong Kong and Australia all performed better.

A bowel cancer screening programme for well people has been on the radar since 1998, but only in 2006 did New Zealand begin to nudge closer to the concept. Last May, with an election approaching, the Labour-led Government committed to fast-tracking the scheme, which now appears a certainty under National.

The Ministry of Health and a taskforce are advising Health Minister Tony Ryall on the "phased introduction" of screening in several district health boards or possibly in one of the country's four health regions.

These pilot schemes, expected in 2011/2012, would lead to a full, national programme. It would be the first organised cancer screening programme for men and would function akin to the National Cervical Screening Programme and BreastScreen Aotearoa.

Based on large overseas studies, it is expected the programme, if well run and well subscribed, will eventually reduce the disease's death rate by "a modest" 16 per cent. On latest statistics, that's 190 lives a year.

Many aspects of the scheme are still being worked out, but it is likely that screening will, in time, be offered every two years to those aged between about 50 and 75.

But though screening has been shown to reduce the death rate, there are - as was shown by the problems in the first decade of the cervical scheme - many ifs.

Australia is learning this now. Like Britain, it introduced a national bowel screening programme in 2006. This week it was revealed that nearly half a million people were sent faulty screening kits. A solution in the Japanese kits was unsuitable for Australia's warmer weather and was returning too many negative results.

More than 100,000 people cleared of cancer have to take the test again.

Aside from this debacle, only 40 per cent of those invited into the scheme participated by sending in a sample.

Dr Susan Parry, an Auckland gastro-enterologist and government adviser on bowel screening, says Britain's programme matched the 60 per cent participation in the studies on which the expected 16 per cent mortality reduction is based. The low participation rate in Australia's A$43 million ($54.4 million) scheme might be because the country already performs a high number of colonoscopies, but the programme does have problems that needed to be addressed.

"I think there is some concern expressed by colleagues in Australia that there hasn't been sufficient funding," Parry says.

The cost of New Zealand's scheme is not yet known. The cervical and breast screening programmes cost $27.2 million and $42 million a year respectively.

A major risk for a bowel screening programme and a reason why advisers for so long opposed establishing one is that it will lead to a huge increase in demand for colonoscopies. District health boards can't cope with the current demand - Evelyn Clark went private for this on the advice of her doctors.

A 2005 study found long delays which "may be affecting outcomes" for bowel cancer patients. More than 800 patients aged over 50 with symptoms suggestive of bowel cancer had been waiting more than six months for a colonoscopy. Eight weeks is the recommended maximum.

Parry's 2006 screening advisory group recommended an urgent increase in colonoscopy capacity. A 25 per cent boost was needed, but the group calculated a further increase of up to 65 per cent was needed for a screening programme.

She now says the number of colonoscopies being done at health boards has increased since 2005 with the use of elective surgery money and contracting-out to the private sector, but delays remain.

Christchurch colorectal surgeon Professor Frank Frizelle, a blunt critic of the speed of progress in setting up the programme, says this is costing lives.

"Progress on colorectal screening in New Zealand has been incredibly slow." And he is dismissive of the hold-ups being blamed on the shortage of colonoscopy capacity.

"In Auckland, most people have more capacity to do colonoscopies than they are utilising in the private sector. Like with breast screening, there weren't the resources there, and then when the screening was tendered, the resources became available. The resources will follow the market."

Colonoscopy is mainly - and in New Zealand exclusively - performed by doctors: either specialist gastroenterologists or surgeons. Ryall's taskforce is investigating whether specially trained nurse practitioners could do it; some do already in Britain.

Frizelle is in no doubt nurses could be trained to do the job as well as doctors, but with a historical eye on the ruckus from medical groups whenever nurses have expanded into what doctors have seen as their roles he notes: "It would be exceptionally political."

Another uncertainty over the New Zealand programme is the kind of screening test to be used. Neither is ideal. The so-called "guaiac" test used in the large trials only picks up half of cancers. The "immunochemical" test is more sensitive and testing can be automated, but some researchers fear the very high rate of positive results it would produce - including false-positives - "could overwhelm health services due to colonoscopy demand".

For Frizelle, the slow progress on bowel screening reflects a widespread malaise in New Zealand's cancer services which, he says, are failing patients and fall short of the "fine words" in the Government's cancer control strategy. More money and more health workers are needed and, crucially, leadership.

He points to lung cancer: a study published last week found unacceptably long delays before patients with early-stage disease started treatment at one hospital. For outpatients, the median time was 18 days from referral to first assessment by a chest physician.

The Cancer Society's medical director, Professor Chris Atkinson, says the cancer workforce has long been asked to do more in terms of numbers of patients, treatment complexity, and patient and family expectations, than is feasible for its size.

There are shortages of most kinds of cancer and palliative care practitioners, despite yearly increases of 3-4 per cent in patient numbers due mostly to the ageing of the population.

And not all kinds of cancer are treated the same. There is a hierarchy in public perceptions and resources, breast cancer commanding perhaps the most attention, with a variety of charities and research or support groups.

Frizelle draws the contrast between breast and bowel cancers: "You see lots of pink ribbons; you don't see too many brown ribbons do you?

"I'm not saying the patients don't suffer with breast or cervical cancer. I'm just saying bowel cancer doesn't attract the media hype, the emotive response you see with those other areas."

But better than late treatment is early detection and that's what Stan Clark now wants for his and Evelyn's three adult sons, and for the country.

He has taken the screening test, but what about his sons, given that bowel cancer can run in families?

"They have been told, because they have a first-degree relative who had bowel cancer, they should have themselves screened before they turn 50.

"[Health authorities] have talked long enough about screening. If other countries have taken it on, why are we taking so long?"

SCREENING FOR BOWEL CANCER

Bowel cancer kills around 1200 New Zealanders a year - one of the highest rates in the world.

The causes are uncertain, but strong family history of the disease is a risk factor. People with longstanding, extensive inflammatory bowel disease are also at increased risk.

Exercise, healthy diet and not smoking may be protective.

The usual treatments are surgery, radiotherapy and drugs, depending on how far the cancer has spread and its location.

It is predominantly a disease of those over 50, although it does affect some younger people and, when it does, it is often more aggressive.

Symptoms can include rectal bleeding and changed bowel habit.

Patients can ask their doctor for a screening test.

Mass screening of well people is expected to begin, progressively, from late 2011.

People, probably those aged 50 to 74, would send a small faecal sample to a lab in a special container to be tested for unseen blood.

Those who test positive would be referred for a diagnostic colonoscopy, an intestinal examination using a flexible tube mounted with a tiny video camera and surgical instruments that can remove polyps or biopsies of suspected cancers.