"I ran to the hospital and said `What's wrong?'," Mrs Reuben recalls. "They told me I had lymphoedema, which was incurable and quite common in breast cancer patients. I screamed, `Why didn't you tell me this could happen?' They replied, `We think you ladies have enough to cope with, without being told about this as well."
Lymphoedema is an overflow of tissue fluids resulting from a failure of the lymph system. It can occur anywhere in the body, can cause limbs to swell frighteningly and is particularly common in cancer patients who have had lymph nodes removed from the armpit. The condition eventually causes arm swelling in 25 to 30 per cent of women who have been treated for breast cancer.
Mrs Reuben's swelling disappeared, only to return with a vengeance several years later, in 1993. A freelance hairdresser who had battled through her cancers and raised two children, she considers herself a fighter but nothing prepared her for lymphoedema.
"At one stage my left arm was 60 per cent larger than my right," she recalls. "I had to buy casual shirts with big arms and cut open the sleeve of my nightdress. The arm was an incredible weight and I was constantly aware of this terrible aching.
"There is a pulling and tightening as the skin extends like a blown-up balloon. It can be so bad that you can't even bend your fingers or dress yourself. At the hospital I was told there was nothing they could do for me."
Mrs Reuben eventually found relief in a new treatment just beginning to take off in Britain. Manual Lymphatic Drainage, or MLD, is a type of massage which doctors now believe can help reactivate the ailing lymph drainage system. It has dramatically altered her quality of life.
"MLD isn't a cure - my swollen arm will never look like my other arm again - but the therapy helps keep it under control. It has made a tremendous difference to me mentally."
The lymph system is perhaps the least understood system in the body, according to Dr Peter Mortimer, consultant skin physician at St George's and the Royal Marsden hospitals, London, and a specialist in lymphoedema. "Molecular biologists can investigate DNA but I can't measure lymph flow in your arm or leg," he says.
The lymph is part of the body's waste-disposal system, a clear fluid that removes proteins and other substances via 600 or more lymph nodes. Unlike the bloodstream, which is pumped by the heart, the lymph has no pump of its own, relying on gentle external pressures such as body movement, muscle contraction, breathing and the pulsation of nearby arteries to keep its fluid moving. Gradually the lymph drains into bigger vessels, finally emptying into the bloodstream in the neck.
Disruption of this complex system is common following cancer treatment, but the exact mechanism is still unclear.
"You can get gross enlargement of the limb, which becomes misshapen with deep crevices and folds," says Dr Mortimer. "Such is the pressure that builds up, the skin can blister and weep. Talk to a patient who has had it to any degree and they will tell you it's thoroughly miserable."
In the medical journal Cancer a year ago, Dr Mortimer and his team reported on the psychological states of 100 breast cancer patients, one half of whom suffered with swollen limbs. They found a significant problem in self-esteem for those with lymphoedema, including problems at work and in relationships.
Yet for years the risk of lymphoedema was barely mentioned to cancer patients. "Patients are told this is a small price to pay for the success of their breast cancer treatment," says Dr Mortimer, "but this is not an acceptable statement in this day and age. Of course, the primary concern must always be the cancer.
"However, there is now a hot debate among medical oncologists. Removal of lymph nodes is normally done to find out how far the cancer has spread and to plan treatment; but some say we should leave the lymph nodes alone and give everyone chemotherapy. The less intervention there is to the armpit, the less likely it is that lymphoedema will occur."
Sally Harrison, a sufferer who founded the Lymphoedema Support Network, is critical of the way many cancer patients are treated. "Because they can't write a prescription for lymphoedema and it isn't usually life-threatening, doctors tend to bury their heads and pretend it isn't there," she says.
After suffering lymphoedema for more than a year, Susan Reuben finally went to Richard Rundle, a practitioner of Manual Lymphatic Drainage at the Natural Therapy Centre in Marlow, Buckinghamshire. First developed in the Thirties by Emile Vodder, an Austrian doctor, for the treatment of persistent colds and other illnesses, MLD is popular in the US and on the Continent.
Mr Rundle describes MLD as a "skin movement technique" rather than a massage. He applies 30 "torres" (a measurement of manual pressure), to help reactivate the lymph drainage system. This is the equivalent of placing one hand on top of another and pressing very gently.
Clients like Mrs Reuben who have suffered structural lymph damage may be offered intensive therapy to begin with - an hour every day. As the lymphoedema is reduced, fewer sessions are needed.
"There are only about eight movements to learn, but how you apply them is crucial," says Mr Rundle. "MLD helps normalise the body in many ways: I also use it to treat skin and lung-related problems. In America, people go for MLD as a preventative treatment."
The Lymphoedema clinic at the Royal Marsden is also offering MLD to some patients. "I believe MLD is effective," says Dr Mortimer. "But even though patients say MLD is wonderful, it is difficult to measure objectively to what extent it improves the lymphoedema." He is hoping to conduct a trial of the technique soon.
Susan Reuben is in no doubt that after two months of treatment MLD has made a measurable difference. "At the time of my 50th birthday I was in a terrible state but for the first time in nearly a year I feel I have my arm back again," she says. "Starting treatment turned everything around. The results are amazing."
For further details contact the Lymphoedema Support Network, 0171-352 4686; the Natural Therapy Centre, 94 High St, Marlow, Bucks, 01628 481253. MLD costs about £40 an hour.Reuse content