By Virginia Ironside
'I have improved, but I'm not 100 per cent,' said Sir Michael Holroyd
The news for cancer sufferers is good.
Life expectancy has zoomed up with better treatments generally.
Since the early Nineties, there has been a year-on-year 3 per cent increase in the number of people who survive the disease.
But what hasn’t caught up are treatments for the long-term medical side-effects of the cancer therapies, particularly any cancer involving the pelvic area, such as cancers of the rectum, cervix, prostate, bladder or uterus, and especially when radiotherapy is used as part of the treatment.
The problem is that while radiation therapy burns the cancer, it can also burn tissue around it, and the resultant scarring can cause unpleasant complications, resulting in ongoing diarrhoea or constipation, and bladder and sexual problems.
In addition, as a result of the scarring mechanism, some people can get swelling of their legs (lymphoedema), problems with their skin and even nerve damage.
To make matters worse, the symptoms can appear many years after treatment, because in some people the radiotherapy continues to damage tissue long after it has finished.
So patients have no means of relating the symptoms to the radiation.
In those who’ve had pelvic radiation, 90 per cent of patients report a permanent change in bowel habits afterwards, and 30 per cent have problems with the bladder, often causing urine to leak.
Some problems are so severe patients are housebound.
While the cancer disappears, the effects of the treatment can be life-changing — as Sir Michael Holroyd, 77, award-winning biographer of George Bernard Shaw, among others, found after treatment for bowel and rectal cancer in 2005.
Symptoms can appear many years after treatment, because in some people the radiotherapy continues to damage tissue long after it has finished
Before having surgery, he underwent six weeks of radiotherapy and chemotherapy.
‘I didn’t like the chemo, but I seemed to get on with the radiotherapy,’ says Sir Michael, who is married to novelist Dame Margaret Drabble.
‘But though it may have saved my life, it’s the source of my difficulties today.’
He adds: ‘After a few months, I told the hospital I was having problems with diarrhoea, and was told it would improve. It did, slightly, but I was still going to the loo about 12 times a day.
‘I never knew whether I was going to have a good day or a bad day. I became imprisoned in my own home.’
Most people will have some problems during radiotherapy, explains Dr Jervoise Andreyev, a consultant gastroenterologist at the Royal Marsden Hospital, London, and one of the few doctors researching and treating pelvic radiation disease (PRD).
‘Then, over the next few months, there is some sort of return to normality, but it generally never goes back to where it was before.’
He says one in ten patients will develop chronic pain, with one in five suffering faecal incontinence.
‘Some will have to go to the loo up to 30 times a day, and it carries on getting worse, affecting their quality of life, their sex life, everything.’
Up to one-third of patients will have long-term problems with urination.
The problem is that so few people in the medical profession are aware of it. If a patient goes back to his oncologist, he’ll simply say that he’s clear of cancer, so what’s the problem? He’s done his job.
And when patients go to their GP, they are most often told that it’s irritable bowel syndrome, about which very little can be done.
They’re usually told to avoid tomatoes and all fibrous foods, and to take a diarrhoea remedy.
But the truth is that a lot can be done for these patients. It’s just a matter of getting doctors to refer patients to someone who understands the problems.
In the whole of Europe and the U.S., there is only one clinic to help people affected with PRD. It’s run by Dr Andreyev, who works with a team of specialist nurses and dieticians.
‘The alarming truth is that every hospital has a specialist for other bowel disease, such as ulcerative colitis or Crohn’s,’ he says.
‘But although the number of people suffering from problematic PRD is the same as for Crohn’s or ulcerative colitis, we run the only comprehensive clinic specialising in how to treat them.’
At the Royal Marsden clinic, patients are put through a series of tests, obsessively investigating the cause for every symptom they report.
‘For example, there are at least 13 causes for diarrhoea after pelvic radiotherapy,’ says Dr Andreyev.
‘Each needs a different approach.’
Sir Michael was treated at the clinic.
‘Dr Andreyev was incredibly helpful. He gave me antibiotics to see if it was a bacteriological problem, but it seems it was the scarring. He suggested that I go on a low-fat diet.
‘I have improved, but I’m not 100 per cent. I still cannot tell what each day will bring.
‘I would have liked to have been told earlier by people who understood what it was, and knew who I could see.’
This is a common complaint. When Richard Surman, chairman of the Pelvic Radiation Disease Association and himself a sufferer, sought help, he got the runaround.
‘The chemotherapy people said it was the radiotherapy to blame, and the radiotherapy people told me it was the chemotherapy.
‘When you talk to the surgeons and say you’re suffering, they look bewildered.
'To them, you haven’t got cancer so it’s the end of the story. But it often isn’t.
‘The first time I was aware of a problem was a year after I’d been cleared of cancer and had long finished my treatment. Completely out of the blue, I had an “accident” when I was out.
‘I didn’t leave the house for a month. I’d be fine for a while, and then it would hit me.’
Mr Surman also saw Dr Andreyev. As well as antibiotic treatment, pelvic-floor exercises and dietary changes, he was given the anti-depressant amitriptyline, which has useful side-effects in stabilising the bowel.
A recent study from the Royal Marsden has also suggested that statins and ACE inhibitors — used to treat high blood pressure — might help protect against scar tissue formation.
‘We are becoming increasingly good at knowing how to cure cancer,’ says Dr Andreyev.
‘Mechanisms exist to address the psychological struggles of patients with cancer, and the hospice movement has revolutionised the care of those dying from cancer.
‘But what we have failed to address systematically is how best to care for the patient who is cured of cancer but is living with the physical consequences of the treatment.’
The Pelvic Radiation Disease Society. prda.org.uk, PO Box 602, Epsom KT17 9JB, or tel. 0845 434 5134.