Lymphoedema sufferer Maxine Goldie: 'My own doctor didn't know what was wrong'

A disfiguring and distressing condition that can be a result of cancer therapy requires costly treatment that many cannot afford, writes Russell Blackstock.

When Maxine Goldie was stung on the right arm by a wasp while gardening she didn't think it was too serious - until she noticed the rapid and alarming swelling.

The Auckland restaurant owner and keen sportswoman was stung when she stuck her hand into a bush to pull out some weeds.

Within minutes her arm seemed to be inflating like a balloon.

"I went inside and told my partner Barry that I had a fat arm and asked him what he thought I should do," she says.

Goldie had six months previously had a mastectomy after a breast cancer diagnosis.

"When the swelling became a real concern I immediately phoned my oncologist," she says.

"He told me to go straight to A&E as I was at risk of developing something called lymphoedema."

The swelling has since persisted. Goldie attends a therapist once a week to have litres of fluid drained from her arm, at a cost of up to $150 a time.

The 46-year-old has secondary lymphoedema - a condition where the lymphatic system has been damaged through infection, radiotherapy or surgery.

She is one of an estimated 5000 New Zealanders who develop the condition after cancer treatment.

It is different from primary lymphoedema, which is caused by an abnormality of the lymphatic system - a condition that affects an unknown number of New Zealanders.

If left untreated, lymphoedema can result in disfiguring and disabling swelling of the limb and sometimes spread to other parts of the body.

Its most extreme form - and probably most commonly known - is elephantiasis.

Early diagnosis and treatment assures the best outcome. But there is so little known about the condition and funding for treatment is limited, forcing most sufferers to go private.

Maxine Goldie with her arm strapped to help with Lymphoedema, which is a result from her cancer treatment. Photo / Greg Bowker

Goldie was aware she was at risk because she had 24 lymph nodes removed from under her arm during cancer treatment four years ago.

But she was shocked how quickly the swelling set in when she was stung six months later and she is resigned to managing her lymphoedema for the rest of her life.

"At first I wasn't sure what to do as there is a limited number of specialist therapists who deal with this in New Zealand," she says.

"I saw a number of practitioners but no one really knew what it was or how to treat it."

Goldie eventually began seeing veteran lymphoedema therapist Michele Urlich at her private clinic in Auckland.

It is a debilitating condition. Every week Goldie has her arm taped in a way that helps drain the fluid away. Regular exercise also helps.

"Some days my arm is better than others," Goldie, from Greenhithe, says.

"I like to kitesurf, which seems to do my arm the world of good but I also like to play squash and that is not so easy.

"But I persevere with it.

"I am one of the lucky ones in that the swelling isn't too severe.

"But I own a restaurant and when I'm out on the floor working lots of customers notice it and ask me how it happened, which can be embarrassing.

"I also have to be very careful I don't get bitten or stung by anything otherwise the arm will just blow up again."

After almost two decades in the field, 70-year-old Michele Urlich is regarded by many patients as the guru of lymphoedema treatment.

The therapist is chairwoman of the Lymphoedema Support Network and runs a clinic from her house in the Auckland suburb of Mt Albert.

She says lymphoedema can erupt for a number of reasons. And the primary version appears to be genetic.

"Children can be born with a big hand or a big foot," she says.

"Other times girls can develop it when they reach puberty, or women can get it after having a baby.

"No matter how little they eat or how much they exercise, they just keep gaining weight and can't seem to lose it."

Urlich, who trained in Adelaide, sees up to five people a day.

Part of her treatment involves stretching medical tape along patient's limbs, which helps drain fluid from the body.

She says there is a real shortage of trained therapists in New Zealand - and there is not enough funding for treatment in the public health system.

"This can be a very distressing condition, especially for women, many of whom won't wear certain clothes in case it is noticeable.

"Or they try to cover it up."

All the DHBs in New Zealand have lymphoedema services but they are extremely overworked and there are big waiting lists, Urlich says.

"There are also a number of private practices but not everyone can afford it," she says

"And not all insurance companies will pay for lymphoedema treatment, even if it is the result of having treatment for cancer.

"There is not enough awareness in the medical world and elsewhere about just how widespread this condition is."

Sufferers held an awareness day in early March - part of a global movement to draw attention to the little-known and incurable condition.

They want more funding. Some patients are paying up to $5000 a year from their own pockets for weekly treatment sessions and special compression garments.

Dr Andrew Simpson, chief medical officer at the Ministry of Health, says individual District Health Boards are responsible for providing or funding health services in their district.

"People who are concerned they may have or require treatment for lymphoedema should discuss this with their local DHB, treating clinician, or GP."

The ministry is regularly contacted about special interest topics by groups such as the Lymphoedema Support Network, and was happy to receive input from them.

"Data on the incidence of lymphoedema is not currently collected by the Ministry of Health," Simpson said.

Therapist Michele Ulrich works with Cancer survivor Maxine Goldie. Photo / Greg Bowker

Another of Urlich's patients , a 52-year-old business woman who asked to be known only by first name Carmen, has primary lymphoedema. She first noticed something was wrong when her limbs started swelling after she had been doing sport.

"For a long time I couldn't figure out why my arms and legs would blow up even after I had run a marathon or done a 100km cycle race," she says.

"The fluid kept building up and just would not go anywhere."

Two years ago she was diagnosed with lymphoedema by a specialist overseas.

"My own doctor didn't know what was wrong and I started doing my own research," she says.

"I ended up going to see someone in Singapore who confirmed it was lymphoedema."

Carmen says she has changed her wardrobe in order to disguise the swelling.

"I'm a size 8-10 in the waist but can't get trousers to fit because of the size of my legs," she says.

"I'd love to be able to pull a T-shirt and jeans on to walk to the shops, but that is just not my gig.

"I also wear compression garments in the winter, which are very effective, but the medical taping works better in summer and I am lucky I can afford the kind of clothes that cover things up.

"I am also fortunate to be able to pay for treatment from Michele. But not everyone can afford this and I believe funding should be there for everybody as this can be a very distressing condition.

There is not enough awareness in the medical world and elsewhere about just how widespread this condition is.

Michele Urlich

"I spoke to someone recently who has had to give up her job because she simply can't stand up any more."

Claire Doole, a Kiwi lymphoedema educator and therapist, agrees.

She believes more funding should be in place not just for treatment but for further education of medical professionals such as doctors, nurses, physiotherapists, occupational therapists and caregivers in rest homes.

"Funding is a big issue for many people with long-term conditions," she says.

"And for people who have already had cancer treatment, the lymphoedema can be particularly upsetting.

"It can remind them of the cancer and they wonder what the hell is going on, or if it has come back, which all just adds to their distress."

When the lymphatic system slows

Lymphoedema is a condition where the lymphatic system - a filter network of tiny vessels that runs alongside the circulation and drains waste products from the blood - isn't working properly.

Normally, fluid drains from the lymph channels into the lymph nodes. These nodes act like filter stations that process the waste - the fluid itself goes back through the body into the circulation.

However, if the lymphatic system is faulty, the fluid it would normally drain away accumulates in the tissue and the area swells up. The skin becomes like a soggy mattress, because there's too much fluid in the tissue.

There are two types of lymphoedema. Primary lymphoedema is when there is an abnormality in the development of the lymphatic system.

Secondary lymphoedema is when the lymphatic system has been damaged in some way, often through infection, radiotherapy or surgery.

Up to one in four women who have undergone a mastectomy develop the problem.

Patients can have swelling anywhere on the body or face, although the majority have it in their legs and sometimes in their arms.

• For more about the condition, go to lymphoedemanz.org.nz