You’ve had breast cancer, completed your treatment, and you’re getting on with your life. Then one day, months or years later, the arm on the side where you had surgery feels achy and heavy and seems swollen. It doesn’t go away, so you see a doctor and discover you’ve got lymphoedema. It won’t kill you, but neither is there a cure. It’s with you for life.
People can be born with lymphoedema, or it can be caused by breast cancer treatment and other surgery. To put it in context, within 15 years of having lymph nodes removed during surgery, 25 per cent of breast cancer patients will have lymphoedema; within 15 years of having surgery and radiotherapy, 45 per cent will have the condition.
If caught early, it can be treated with specialised physiotherapy, exercise and wearing a compression sleeve. Left untreated, it can cause unsightly and debilitating swelling of the limb and hardening of the skin. The problem is that very few people know of this common result of breast cancer treatment.
The lymphatic system is a network of tiny vessels that lies just below the skin and keeps the immune system functioning, flushing away toxins and infections. When the network gets damaged, it needs help to keep pumping, or oedema, or swelling, occurs.
“Most people don’t know they have a lymphatic system,” says Nathan Bridgeman, a lymphoedema physiotherapist whose clinic is in Wan Chai. “In Hong Kong, awareness of the condition is low, and there are only a handful of private practitioners here.”
Nathan estimates about 15,000 people are living with lymphoedema in Hong Kong. Some of them turn to the CancerLink Support Centre in Central, where classes, talks and other services are provided free of charge by the Hong Kong Cancer Fund.
Registered oncology nurse at the centre Aster Lo says: “Our focus is on how to prevent lymphoedema. We fill the gap between surgery and getting lymphoedema. There aren’t enough resources in the community, and this is a major concern among breast cancer patients. Also, if a patient needs intensive treatment, it can be very expensive. A referral system is important, in public and private hospitals, so patients go to the best person available for advice.”
Helen Chan Tak-sau, 61, is a volunteer at the centre. She has lymphoedema in her right arm, and was diagnosed 10 months after her breast cancer surgery in 2008. It prevented her from taking up a job offer several years ago because she cannot write or type for long. Chan, whose cancer has now spread to her bones, has devised her own exercise programme and sleeps with her arm bandaged rather than wearing a compression sleeve.
She says: “I try not to think about lymphoedema because my treatment has been ineffective. Six visits to a physiotherapist made no difference. I think physios could be more focused on this issue, I was offered exercise but no real problem-solving.”
Programme manager at the centre Polly Lim adds: “I wish there was more awareness of this issue. The standard of care is rising, however Hong Kong needs more physiotherapists trained in lymphoedema treatments. Everyone diagnosed with breast cancer should be given up-to-date information about the condition.”
Such information right now would include the possibility of microlymphatic surgery, long viewed with caution but gaining a reputation as success rates rise. Carried out by plastic surgeons, either lymphatic vessels in the affected area are connected to nearby veins, or working lymph nodes are transplanted.
Dr Lawrence Liu Hin-lun is honorary clinical assistant professor in the department of surgery at Hong Kong University’s Li Ka Shing Faculty of Medicine, whichi is pioneering this microsurgery in Hong Kong.
Liu says: “In Tung Wah Hospital and Queen Mary Hospital, about 50 per cent of the patients seen in the lymphoedema clinic chose surgery. The 50 per cent who don’t receive surgery are usually early stage patients, where physiotherapy will be offered, patients who are at high risk of surgery because they are old and frail, or patients who simply don’t want surgery.”
The operations have a 70 to 80 per cent success rate, with the swelling reduced. Although surgery cannot cure the condition, Liu says it won’t worsen it, either. “In the years to come, there will be more supporting evidence for microlymphatic surgery, so more refined operation techniques are expected to evolve,” he says.
“Researchers have also found that certain factors can stimulate the growth of new lymphatic vessels in animals. Ongoing research is required to study the use of such therapy in humans.”
If the “poor cousin” of the breast cancer world is moving to centre stage at last, what other improvements could we see for treatment? Surgeons are already removing fewer lymph nodes during surgery, which is resulting in a drop in lymphoedema cases.
In Hong Kong, Bridgeman would like to see the public and private health care systems working together more closely so all patients are offered a comprehensive system of treatment. He also wants traditional Chinese medicine to offer up its lymphoedema treatments, which include acupuncture and herbal mixtures, for scientific examination. “Hong Kong would be the best place in the world to do this,” he says.
Bridgeman and Liu agree the commonplace “lymphatic massages” offered as a weight-loss aid in Hong Kong’s beauty salons should not be mistaken for the physiotherapy that lymphoedema patients need.
“Such massages devalue the expertise that practitioners offer in the eyes of doctors who are not well informed and don’t know where to refer their lymphoedema patients,” Bridgeman says.
Liu adds: “Awareness of the condition is much lower in Asia than elsewhere. For example, the patients I encounter tend to withdraw from public life because of their big limb. They are afraid to be asked about it and stared at. This reflects that our society is not aware of this condition.”
It’s an experience that upset Wings Ko Wing-see, 57, one day when she was wearing her compression sleeve and a passer-by shouted at her: “What’s wrong with you?”
Ko, who does tai chi, yoga and stretch classes to help her condition, had treatment for breast cancer in 2010 and was diagnosed with lymphoedema in her left arm in 2015.
She sums up very well how people who live with lymphoedema feel: “Sometimes I get very annoyed that I have to wear a compression sleeve. I really thought I was OK, I did all the right things to prevent lymphoedema, but five years on, I got it and it’s irreversible. The idea of a cure is a hope, but it seems very far away.”
For support or more information about lymphoedema, contact Hong Kong Cancer Fund’s CancerLink Support Centre at The Centre, 99 Queen’s Road Central, tel: 3667 3030; physiotherapist Nathan Bridgeman, tel: 2210 7118; email email@example.com.