Call for expansion of lymphoedema services nationwide

Around one-quarter of breast cancer survivors in Ireland go on to develop secondary lymphoedema, a long-term and progressive condition which causes swelling in the body's tissues, especially the arms and legs.

Around 20,000 people in Ireland have the condition, but trials by the HSE have shown that many cases could be prevented through early intervention.

Since 2019, three proof-of-concept early detection services have been established in The Mater Hospital and St James's Hospital in Dublin and at University Hospital Limerick.

The HSE said these hospitals operate surveillance programmes that monitor patients for the very early signs of lymphoedema following cancer treatment and allow treatment to begin promptly when changes are detected.

Early results from these programmes have been encouraging.

In breast cancer patients, the incidence of lymphoedema has reduced from approximately 25% to 2% through early detection and intervention.

The HSE said funding is currently being sought to expand these services to all oncology centres nationwide.

There are also currently three proof-of-concept Specialist Lymphoedema Clinics in counties Meath, Donegal and Clare.

'Postcode lottery'

No such services were available to Melanie Hudson from Co Roscommon, who having survived breast cancer, is now living with lymphoedema.

The debilitating and chronic condition that has caused her right arm to swell - making daily tasks more difficult.

She had 14 lymph nodes removed in surgery, but while she said her cancer care was excellent, she was not aware of the heightened risk of developing lymphoedema afterwards.

"I had never heard of it until I was told I had it, basically," she said.

"It's like you fall off the cliff. In terms of the services available to survivors of all types of cancer, but I can only speak for breast cancer, I would find particularly poor."

Even though Ms Hudson lives just a few minutes' drive from Athlone in Co Westmeath, where there is a HSE primary care centre that deals with lymphoedema, her Roscommon postal address means she cannot be treated there.

"There's nobody in the Roscommon HSE area trained in the delivery of manual lymphatic drainage," she said.

"I've often heard the term the post code lottery ... the red tape and the bureaucracy of it is a little bit annoying because it’s forcing me to drive further than I should have to."

She currently has to travel all the way to the East Galway and Midlands Cancer Support centre in Ballinasloe in Co Galway to get help with her condition.

She said there is an overreliance on charitable organisations, when it comes to post-cancer care, and she said an earlier diagnosis would have helped too.

She added: "As we know with everything, intervention is key.

"On certain occasions I ended up in hospital because the swelling got so bad and it became quite inflamed, that I ended up in A&E and then referred to Galway and then referred to the symptomatic breast clinic in Galway, so if you actually add up the cost of that, would it not be logical to put the money into the services that would avoid having to do that?"

The HSE said intervention services have also resulted in an 87% decrease in hospitalisations due to complications from lymphoedema, including cellulitis which can be very costly to the health system.

The Irish Cancer Society is calling for funding to be made available through the Department of Health and the HSE to expand these early detection services to all oncology centres nationwide.

However, it said there is a significant gap in terms of how these services are provided nationally, with a lot of regional variation.

"It’s very much based on where you live in terms of accessing services to support someone who has lymphoedema," Survivorship Manager with the Irish Cancer Society said.

As part of Budget 2027, the Irish Cancer Society called for the Government to invest €8 million into lymphoedema services, aimed at prevention, early detection and the management of lymphoedema as a chronic condition.

Lymphoedema is a frequent complaint for people after cancer treatment, particularly after surgery and radiation treatments.

"It can damage the lymph area and therefore slow down its movement," Ms Loughney said. "It can result in people feeling pain or swelling or discomfort in their day to day lives and without treatment it can get worse and it can develop into cellulitis so early intervention is really important."

The Irish Cancer Society said hospital admissions associated to lymphoedema cellulitis equates to about €13.6 million annually.

"It's a huge financial burden on the system, not only on the person's quality of life and their long-term health," it said.

The society said those who survive cancer need to be more empowered to know which symptoms to look out for and where to get help.

"In general, we need to do more in terms of education and information sharing and making sure that health care workers provide that information from an early point, addressing those unmet needs early on," it said.

Purple Paddlers and the LymphActive App

The Purple Paddlers is a team of breast cancer survivors that race dragon boats on the River Slaney in C Wexford.

One of its members is Lorraine Smyth, Thompson, who as well as having survived breast cancer herself, works as a digital manager with the HSE.

When she discovered the risks around lymphoedema, she was determined to help others identify the early warning signs and know that there is help and preventative treatments out there.

Along with trials at University Hospital Limerick, members of her paddling team have also been helping to test a new LymphActice app which she helped to develop at the HSE.

It is free to download and aimed at reducing cases of lymphoedema.

The app has information on skin care, nutrition and exercise and a timer can be set to remind the user do their exercises three times a day.

"It has a symptom tracker to monitor changes and an email address for patients to contact a clinician if they see changes. The exercises are in video format made with patients and clinicians, so there is real collaboration with cancer survivors.

"Many patients get caught because they think you only need to do exercises for a few weeks after surgery or a few months. Unfortunately, it needs to be done indefinitely," she said.

"When we were doing the preventative app, we discovered a lot of patients who already had Lymphoedema. So, we now have a specific stream for those patients who already have it, which will be up before Christmas.

"When you sign into the app in the future it will say preventive or maintenance pathway to choose from. At present people with lymphoedema are using the exercises in the preventative one," she added.

Thelma Taylor from the Purple Paddlers said all of the team have benefitted from trialling the app.

"We've all used it and found it really, really helpful.

"It is great to be reminded to exercise, it’s great to be reminded of the exercises you need to do and that along with the paddling has really helped people," she said.