If you have cancer your chances of survival are dramatically better

Patients visiting the website of MD Anderson Cancer Center in Texas are immediately informed that the hospital is ranked number one in the US. The world-renowned centre of excellence vies with Memorial Sloan-Kettering Cancer Centre in New York every year for the top place in the American league tables of cancer treatment.

Last year around 100 new British cancer patients registered with the two leading US hospitals to give themselves the best chance of survival. But with a course of treatment costing around (pounds) 40,000, only the wealthy can afford the trip.

Closer to home, a leading cancer doctor at the European Institute of Oncology in Milan, regarded as one of the best cancer centres in Europe, was sought out by two British women suffering from breast cancer. They flew to Italy by Ryanair for a second opinion. They had heard of the reputation of Dr Alberto Costa, a breast cancer surgeon at the institute, and director of the European School of Oncology, also in Milan, and wanted to be seen by him. They booked their flights for around (pounds) 28, paid (pounds) 128 for the consultation, and stayed overnight in a Milan hotel.

Costa believes the combination of cheaper flights, information on the internet about leading doctors and hospitals, and mounting evidence that patients have a better chance of survival if they are treated at specialist centres, will result in a boom in cancer tourism.

"What struck me was that these British women came by Ryanair," he says. "There is growing evidence that the number of cases a centre treats is important for survival, so patients will be increasingly keen to be treated at a major centre. I think this, combined with low- fare flights, and the internet, will have an impact."

But British cancer experts insist that world-class cancer care is available in the UK - just not to all patients. They point out that "pockets of excellence" exist in Britain but that the patient has got to know how to seek it out.

A new study shows that a Scottish cancer patient's chance of surviving surgery to remove a tumour varies dramatically depending on who treats them. The research, to be presented to the Association of Upper Gastrointestinal Surgeons of Great Britain and Ireland next month, shows that Scottish patients are 59% more likely to die of their cancer within three years if they are treated by a surgeon who is not a specialist in the type of cancer they suffer from.

Cancer experts from across the NHS describe a system which allows motivated and informed patients to battle to increase their chance of survival by insisting on being treated by the best. Professor Gordon McVie, director of Cancer Intelligence, a cancer consultancy, and former director general of the Cancer Research Campaign, says: "There is world-class care in the UK but patients have got to know how to get it. My commonest calls are from patients wanting to know short cuts through the system. But this is only available to those who are willing to question the system.

"This information needs to be simple for people who don't have the confidence to do it themselves."

Professor Les Blumgart is regarded as one of the world's best liver specialists and is chief of hepatobiliary services at Memorial Sloan-Kettering Cancer Centre. He treats the British patients who can afford to travel the globe for the best care.

"I see a steady flow of patients from the UK. Patients feel the system in the UK has let them down and I think it has. Patients are told they are inoperable when they might not be. There are people who should be treated who are not. I see patients who are here because short cuts have been taken in the UK."

Satvinder Mudan, a cancer surgeon at St George's Hospital in south London, also sees patients who have been told by other doctors that there is nothing that can be done for them.

"The best treatment is available in the UK but it is in tiny pockets and patients have got to find it," he says.

"I see patients who have been told by other doctors that nothing can be done for them. They then go digging around and end up with me or one of my colleagues. That is not easy for the majority of people who may not be able to access this information for a variety of reasons."

He says it would be easier for patients if British hospitals were ranked in the same way as in America.

"One of the things that we do not have in our culture is rankings like the US centres. As a patient you want to go to someone who cannot only get you through the procedure that is required, but can give you the best shot possible of being cured.

"What is of value to the patient is increase in probability of survival. We do have to recognise that there are groups of centres that are better than others. That kind of information doesn't exist across the country. We don't think it is culturally acceptable to ask these questions," he says.

Mudan says some doctors have greater expertise than others and that we should be more open about this.

"It is unfashionable to talk about superiority but we need to recognise that there are centres which are better than others and that we should promote and support these centres to become even better," says Mudan.

Doctors point out that as new research dispels the myth that patients will get the very best of care wherever they are treated in the NHS, patients will demand more details of individual doctors' and hospitals' results.

For the last two years, the Association of Upper Gastrointestinal Surgeons of Great Britain and Ireland has been trying to persuade the government to fund a database of survival statistics. Eventually, the surgical association decided to fund the league tables itself.

Professor James Garden, consultant surgeon at the Hepatobiliary and Pancreatic Unit at Edinburgh Royal Infirmary, is concerned at the degree of variability in NHS care between different hospitals. He says such databases should be set up to tell patients where they can get treatment that will give them the best chance of staying alive.

A study by Garden of 2794 Scottish patients first diagnosed with cancer between 1993 and 1997 showed that patients were 59% more likely to die within three years if they were not operated on by a specialist.

A specialist surgeon is a surgeon who has received specific training in an area, for example, the lungs, colon or pancreas. The specialist will be part of a multidisciplinary team treating patients with a problem in that area and will work in a unit treating a significant number of cases.

Garden says: "The risk of death three years after diagnosis was 59% higher among patients undergoing surgical intervention by a non- specialist.

"This is one of the reasons why we want to establish and publish results. We should be encouraging surgeons to look very carefully at their own results and, if their results are poor, to ask themselves if they should continue to undertake this surgery or whether they should consider referring to a specialist centre."

The Hepatobiliary and Pancreatic Unit at Edinburgh Royal Infirmary has five specialist surgeons and is closely linked to the Scottish Liver Transplant Unit. It is proud of its low surgical death rate and plans to publish the figures and make them available to patients.

"Our problem in the UK is that there is no data available to tell us who is doing what and what the results are. There is very limited information available to the public or, indeed, to referring GPs or physicians, about what the results are at any one given centre, or for any given medical practitioner," says Garden.

"In North America it is not unusual for an institution to publish its results and to have them available for anyone who wants them. But there really has been limited information in this country. If someone was looking for the results of a particular centre for liver surgery, the only way they would be able to obtain that would be by searching through the internet, hoping that a centre had published results in a medical journal.

"A number of surgical groups are trying very hard to get funding to publish just this kind of database.

"The Association of Upper Gastrointestinal Surgeons, for the last two or three years, has been banging on the doors of the powers that be for funding to establish a database. Centres and surgeons would know where they stand. The database would identify if their results are out of line with the average mortality for a particular operation.

"This is being done on an anonymous basis but we recognise that pressure will be on us, in time, to make this available to the public. It will be up to individual consultants whether they want to publish. We would certainly encourage them to do so. It is important to demonstrate that we are doing the right thing for the patient."

Garden admits that if one of his relatives was ill, he would draw on all the knowledge he has to ensure that they got seen by the most appropriate specialist. He says the information should be available so that members of the public can do the same.

"If a member of my family was ill I would glean whatever information I could about who the best person was to look after them. I do not see why the general public should be any different.

"I think all patients should have access to that sort of information and should be able to go to the centre of their choice."

The day after Louise Maisonpierre's 43rd birthday, she was diagnosed with a rare form of cancer called soft tissue sarcoma. Maisonpierre, who was living in New Zealand at the time, was told by her doctor that there was nothing that could be done for her and advised that she go home and "enjoy the few months she had left".

Four years later, after acting as her own advocate to ensure that she got the best treatment for her rare disease, Maisonpierre, from Devizes, Wiltshire, is still "cautiously optimistic" about the future. She has been told by more than one doctor that her tumours have been inoperable but, so far, has managed to seek out surgeons capable of carrying out the complex and risky operations which have kept her cancer at bay.

"When I was first diagnosed, I was told by the doctor I had at that time that the outlook was dismal and that it was not worthwhile trying any treatment. If I had accepted what that particular doctor had said I would have gone home, been referred to a hospice, and died in a few months."

But Maisonpierre, formerly a journalist, insisted on a second opinion from a cancer expert.

"I decided not to accept that. My attitude has always been 'that is just one doctor's opinion'," says Maisonpierre.

"He generally believed that that was the best thing for me. It is hard to go through a lot of chemotherapy but I have a positive attitude. That choice should be with the patient.

"Doctors vary in their level of expertise and the doctor you are being treated by may not have the skills necessary for the operation you need.

"I was told by more than one surgeon that my cancer was inoperable. I would not want to imply that these surgeons were wrong, but what is inoperable to one surgeon is not inoperable to another. My disease is incurable but there are innovations all the time. It is about knowing where innovative work is being carried out. This has resulted in me extending both the time and the quality of time I have had."

Maisonpierre regularly surfs the internet to find out about the latest treatment for her rare and incurable cancer. She discovered that a trial was being carried out of a new chemotherapy treatment at the Royal Marsden cancer hospital in London and asked her GP to refer her there. For 14 months Louise responded very well to the new drug but eventually the cancer started to grow again. She then found out about a pioneering cancer vaccine at St George's Hospital in south London and asked to be referred there.

"I have been very lucky and managed to get the treatment and the skills and expertise that I needed, but part of that was because I was my own advocate."

Copyright 2003 SMG Sunday Newspapers Ltd.
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