Guest Post by Mark Vernon, whose daughter Sarah recently died of bowel cancer. It is published here because it makes some extremely important points about the state of cancer treatment in this country.
I wish I had the experience, knowledge and opportunity to write a book on the politics of cancer. All in all, it is the medical establishment that ought to be in the dock now. Not that I feel inclined to pursue any specific complaint. Sarah's GP was slow to refer her to a specialist. She was too young to have cancer: her problem was off the beaten track, confounding the inadequate diagnostic skills of the GP. I think of this as a problem with the GP system, by the way, tempting as it is to make accusations of negligence, but a more able GP might have taken the possibility of cancer more seriously, and sooner. Sarah then had to wait for the referral, though my wife Jane and I were in the dark at this point. Whether the wait was outside of government targets or normal practice, I don't know.
Then came the diagnosis, followed quite soon by surgery - a hemicolonectomy. There is a saying I have come across about surgery: the operation was a complete success; the patient died. In Sarah's case, this took nearly a year to happen. But the surgery must be judged to have failed, since the tumour rapidly recurred. And this happened in the middle of adjuvant chemotherapy, which therefore also completely failed, and was abandoned. Then came a revised chemo regime, incorporating the expensive monoclonal antibody cetuximab (trade name Erbitux). This had no effect whatsoever, and was abandoned. Treatment from this point on was strictly palliative, and the medical establishment officially gave up.
I cannot point to any negligence with regard to the failed chemo, but it is clear that the evidence-based, best available treatments were no use at all. Worse, they took up valuable time that could have been used trying out viable alternatives such as Coley's. Worse again, the failed treatment had the usual side effects, including the insidious, invisible one of damaging the immune system. The relentless advance of the disease, combined with the damage to her natural defences, sealed Sarah's fate. Therefore, the standard treatments, in this case, were no better than the alternatives so derided by the establishment, and in fact probably left the patient in a worse state than if no treatment at all (other than palliative) had been given. Experience shows that when chemo doesn't work, it tends to make things worse.
The palliative care Sarah received, especially in the hospices, was mostly of a high standard. But Sarah also had to spend time in hospital where terminal patients are not seen as important by hard-pressed nurses: with exceptions, of course. This time, also, would have been better spent pursuing other treatments.
Alongside the beaten-path syndrome permeating medical practice, and a general lack of imagination, there is a complete failure to evaluate and manage risk. It makes no sense to give up on a patient, as long as there is something else to try. As the case gets more desperate, so the appetite for risk is bound to increase. This not to sanction foolhardiness, but on the contrary, to recommend taking managed risks, with a heightened sense of responsibility.
Just as medical practice has somehow gone astray, at least with regard to cancer, so has its underpinning of medical research. Medical practice is permeated by problems of psychology, groupthink, and culture; and medical research is strongly influenced by forces of economics and politics. These issues are ignored by the conventional practitioners who insist that we, the public, must believe in their cherished treatments, and forsake all others. But it is not enough that the treatments offered are scientific and evidence-based, if basic research has been forced into a narrow scope and unfruitful direction. I hear proud claims that cancer survival has doubled over forty years, but this strikes me as seriously disappointing. Nixon declared war on cancer in 1971, and threw large amounts of money at the problem, but victory is not yet in sight.