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THE late morning train was packed. Andrew Scarborough had been feeling odd recently 鈥� headaches would come and go, leaving him slurring his words. He blamed the stress of his master鈥檚 degree. The flu, perhaps.

Pain unfurled in his head as the train pulled south from London. Spasm gripped his face and his throat seized up. He started to yelp uncontrollably. 鈥淚 felt like I was going to die,鈥� he says. Then he slithered off his seat onto the floor of the carriage, unconscious.

It wasn鈥檛 flu. Scarborough collapsed because vessels in an undiagnosed tumour had burst, spreading blood and cancerous cells through his brain. Once he had recovered from the aneurysm, he started down the usual path: surgery, followed by chemotherapy and radiotherapy.

This is the 鈥済old standard鈥� treatment for aggressive brain cancer. There鈥檚 only one problem, says Matt Williams, a clinical oncologist at Charing Cross Hospital in London: 鈥淚t doesn鈥檛 work.鈥� Williams means that brain cancer patients still die: they just gain, on average, an extra 15 months. 鈥淲e鈥檝e made very little progress. The last significant advance was the addition of chemotherapy to radiotherapy 鈥� in 2005,鈥� says Williams. Candidate drugs have failed in clinical trials, and there鈥檚 little hope that any will be found in the near future.

Like others in his position, Scarborough quickly realised that his prognosis was bleak and turned to the internet for alternatives. He read peer-reviewed scientific papers that seemed relevant to his condition, albeit about studies done on mice or on cells in Petri dishes, not humans, and he came up with a plan. Having studied nutrition at university, his starting point was a food plan known as the ketogenic diet, which involves cutting back on carbohydrates and increasing fat intake (see 鈥�Cake out, insects in鈥�).

鈥淭he last big advance in treating brain tumours was the addition of chemo to radiotherapy 鈥� in 2005鈥�

The medical establishment tends to disapprove of self-imposed diets to control cancer, and for good reason. Apricot kernals and coffee enemas, pills made of kelp and clover: the web is awash with alternative cancer therapies, most of them with no scientific basis whatsoever. Many could be dangerous for people already debilitated by cancer.

What makes Scarborough鈥檚 approach noteworthy is that some oncologists think the basic idea is worth exploring. Adrienne Scheck is running a study at the Barrow Neurological Institute in Phoenix, Arizona, in which people who have been newly diagnosed with brain cancer are put on a ketogenic diet that contains four parts fat to one part of protein or carbohydrate, and stay on it through their radiation and chemotherapy.

Our cells usually get their energy from glucose, which comes from the carbohydrates we eat. But when these aren鈥檛 available, the liver breaks down fat into fatty acids and chemicals called ketones, which our cells can burn for energy instead. Cancerous cells are particularly glucose-hungry and, unlike other cells, don鈥檛 have the ability to switch fuel sources. Scarborough knew that a ketogenic diet is , because one of the breakdown products of fat binds to brain cells, calming the electrical activity that triggers seizures. He hoped his version would deprive the tumour of the glucose it needed, starving it into submission.

You bet your life

Three years later, the remnants of Scarborough鈥檚 tumour that survived the standard therapy have all but disappeared. That striking outcome has surprised his doctors but it is impossible for anyone to know what his experience tells us. He might have responded unusually well to the conventional treatment, with the ketogenic diet having been irrelevant or actually harmful to his overall health. Scarborough would occasionally have seizures, an after-effect of the aneurysm, if he miscalculated his nutrient balance: it took trial and error to find what seemed a stable approach.

If the diet did have any effect, that would have to be pinned down, along with the risks, before doctors could suggest it (or more likely a less extreme version) to other people with similar conditions. And because no one knows if it made any difference, Scarborough has no greater assurance that the cancer won鈥檛 return than anyone else in remission.

But if the ketogenic approach is promising, why has it been left to people like Scarborough to cobble together a diet without any real idea of whether it will work? Part of the problem is that there is no commercial incentive to pursue it: drug companies can鈥檛 afford to conduct trials that cost hundreds of millions of pounds to prove the efficacy of a treatment that anyone can get for themselves at the local supermarket. And there is no accepted way for showing efficacy of a treatment other than trials.

The nature of the intervention also stands in the way of doing a traditional clinical trial. For example, the status quo is a randomised double blind trial, in which people are put into groups at random and neither they nor researchers know who is having the treatment and who is having a placebo. The ketogenic trials could never be double blinded because the change to the participants鈥� diet would be impossible to hide. Nor can it be randomised because people need to agree to make drastic lifestyle changes.

Some, like Scheck, are investigating its potential anyway. Williams, inspired by the same body of literature of case reports as Scarborough, is designing a trial to offer the ketogenic diet to between 40 and 80 people with brain cancer over the next two years and track their progress.

Neither study will be able to confirm whether adhering to the ketogenic diet for the long term will extend life by more than 15 months, but they may offer useful insights. For example, Williams鈥檚 study will be tracking how chemicals and metabolites in participants鈥� blood respond to the diet, perhaps eventually offering a way to get any benefits more directly. And both are deploying 鈥渒eto鈥� alongside the current gold-standard combination of surgery, chemotherapy and radiotherapy. 鈥淚 think the most bang for the buck is using it to make those therapies better,鈥� says Scheck.

鈥淪carborough would occasionally have seizures if he miscalculated his nutrient balance鈥�

If the initial results are promising, Scheck and Williams are planning larger follow-ups. Scheck says her study is about looking at what people are already doing to themselves, in an attempt to validate methods that seem to work. 鈥淭here is a wide variety of things people are doing: some work and some do not. A trial must have enough people doing the same thing to allow a conclusion to be made, otherwise it is just another collection of anecdotal studies,鈥� she says.

Halima Khan of the , a charity that supports innovation, says the way medical interventions are validated will need to change. It鈥檚 becoming more widely recognised that traditional clinical trial methods will need to be adapted to enable patient-generated data to be gathered and analysed for clinical research.

Whether or not this happens, those who feel they have little to lose by trying alternative approaches are increasingly likelyto find or devise their own treatments, even if the benefits are unknowable and the potential dangers enormous. 鈥淚 was willing to take a lot of risks at that time, even risking my life,鈥� says Scarborough, who plans to continue with his diet.

Unless we can find a way to test approaches that don鈥檛 fit into the traditional mould, people like Scarborough will be left needing to gamble with their lives to see if a treatment works.

This article appeared in print under the headline 鈥淎 diet to starve brain cancer鈥�