Niru Vishwanath holds up her left arm, heavily bandaged from fingers to shoulder. "It takes about 30 minutes to properly apply the bandages and compression sleeve," says Vishwanath, who changes them twice a day.
Vishwanath, 52, has lymphoedema, a chronic condition that causes swelling in the body's tissues caused by a compromised lymphatic system, the network of tissues and organs that help rid the body of toxins, waste and other unwanted materials.
It can affect any part of the body, but usually develops in the arms or legs. While there is no cure, it can be brought under control through proper treatment.
Vishwanath, who after a decade in the corporate world took up a position with a Hong Kong statutory body, had never heard of lymphoedema until midway through last year while recovering from breast cancer treatment that included a left breast mastectomy, chemotherapy and radiation therapy.
Lymphoedema is a potential side effect of breast cancer surgery and radiation therapy that can appear in the months, even years, after treatment ends.
"I had the chemotherapy cocktail, and got through it feeling OK, so I thought the radiation therapy was going to be OK too but it ended up being the toughest."
"I also had some lymph nodes taken out," she says, referring to the small bean-shaped structures found throughout the body – including the armpits, groin, abdomen, chest and neck – that filter substances to help the body fight infection and disease.
"I realise now that that – combined with the radiotherapy – was probably the most damaging," she says.
"But nobody told me about lymphoedema," she says. "The swelling, heaviness, stiffness, and pain – and restricted range of motion – was scary because I had no idea how to take care of the problem or whether it needed serious intervention."
Now she's on a mission to raise awareness about lymphoedema, not just for potential sufferers but among those in the city's medical field – doctors, surgeons, oncologists – who she says need to take it more seriously and direct patients to the right kind of care.
"Right now, it is left to patients to inquire, stumble and find their own way, which leads to delays in getting the right help," she says, adding early detection and the right treatment are key. "Sometimes people end up getting the wrong treatment which could aggravate the condition." The only advice she got was to visit a physiotherapist.
After much searching, Vishwanath found specialised care for lymphoedema at the Hong Kong Breast Cancer Foundation (HKBCF).
While she commends the work the HKBCF does – especially given its limited resources – she says the model is more oriented more towards support, education and self-care than treatment.
"These are important too, but in my experience, you need treatment from experts to see the best results," she says. "There is a serious dearth of qualified lymphoedema health professionals in Hong Kong and there's no qualification or certification courses available here."
HKBCF chief executive Connie Lau Yin Hing says more education and awareness about lymphoedema – and better communication between health-care professionals and patients – is urgently needed.
"Although there are no official statistics of lymphoedema cases in Hong Kong, the records of our foundation show that about 35 per cent of patients who have undergone breast cancer surgery and treatment, sought our lymphoedema care service," Lau says. Almost 10,300 people have sought support from HKBCF since it started in 2005, with a total of 230,000 attendances.
Breast cancer is the third leading cause of cancer deaths among females in Hong Kong, according to the government's Centre for Health Protection. In 2019, a total of 852 women died from this cancer, accounting for 13.7 per cent of all cancer deaths in females.
At the HKBCF branch in North Point, Doris Cheung – head of the foundation's breast cancer support centre – demonstrates a machine that measures the amount of fluid build-up in the affected area.
"This device provides a reading on the lymphoedema index so we know how severe the condition is," says Cheung.
"HKBCF hosts support meetings and offers advice on how to perform self-massage and other ways to manage the condition such as exercises and lifestyle changes. We also show patients and their family members how to apply bandages," Cheung says, adding it's a vital step that varies from person to person. Follow-up emotional and psychological counselling for patients is also provided.
Vishwanath, who discovered a lump in her left breast in December 2019, a few days after returning to Hong Kong from Taiwan, says she doesn't want others to struggle to find support like she did.
"Before my cancer diagnosis, I had a mammogram, and was given the all clear, but I didn't feel comfortable, so I had an ultrasound. I got the news on December 31, 2019 – the timing was terrible," says Vishwanath.
"There's no history of breast cancer in my family. My parents are in their mid 80s and still healthy and active and I was also active and had a healthy lifestyle and diet."
Like Lau, Vishwanath wants gaps in the Hong Kong health care system filled so breast cancer patients are automatically referred to lymphoedema experts post treatment.
"It is understandable that the priority of doctors and surgeons is to make sure the cancer is dealt with," says Vishwanath.
"But I want to see more women get treatment in the form of massages, bandaging, compression sleeves and so on at a nominal cost and in the early stages," she says.
"They should be made aware of the possibility of lymphoedema occurring once they have gone through breast cancer treatment. This should be standard protocol."
This article was first published in South China Morning Post .
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