When Karen Brennan was treated for cervical cancer eleven years ago, she had no idea it would lead to a different but no less debilitating condition affecting her legs, groin and abdomen.
The Barna woman who is a senior manager in Boston Scientific was diagnosed with cancer in September 2004. A year later she underwent surgery and was discharged three weeks later. However after six months she was referred back to her surgeon, complaining of abdominal pain and discomfort with slight swelling in the groin.
She was told the problem was down to scar tissue healing.
By 2009 the problem had quite literally ballooned – her leg had swollen to such an extent she had difficulty removing jeans. She was taken into University Hospital Galway where she underwent a series of tests. She was finally diagnosed two months later with Lymphoedema.
The condition occurs when the lymphatic system fails to function causing persistent swelling and it can affect any part of the body. People can be born with lymphoedema or develop it because the lymphatic system has been damaged. Approximately 15,000 people in Ireland are estimated to have Lymphoedema, with over 1,200 developing it each year following cancer treatment.
Karen was given physiotherapy for the condition in Galway which involves manually draining the build-up of fluid. But she came down with serious leg infections and was referred to the Földi Clinic in Germany, a specialist clinic for lymphology.
She is currently on daily antibiotics to manage the condition. Her husband was trained by the German clinic to carry out the manual lymphatic drainage.
“He does twenty minutes and I do the rest, it can take up to two hours. I apply nine bandages every night and put my right leg on eight pieces of foam to drain it for the next day.
“If I do that every day I can manage it. If not I can develop cellulitis where the limb swells up, get very hard and is extremely painful,” Karen explains.
“It’s a nightmare. It’s called cancer’s aftershock. I keep myself very physically active. I do everything in my power to manage the condition.”
The bandages alone cost €2,500 per year while maintenance Földi treatments cost a further €3,000, which she must bear herself. She has health insurance through work which covers one third of the costs.
The support group Lymphoedema Ireland has designated March Lymphoedema Awareness month.
“A lot of people out there don’t know they have Lymphoedema, they are isolated, get little or no support, they may only get to see a physio once every six weeks which doesn’t help when they need treatment every day,” explains a spokesperson.
“There are no definitive pathways to treatment, it can take ages to get diagnosed, some people get referred to a cancer specialist, others a physio, some patients are sent to a vascular person. There aren’t enough people trained in Ireland to diagnose or treat this really debilitating condition.
“More and more cases are presenting because cancer outcomes are so good. You think it’s fantastic the cancer didn’t get you but it leaves you with this debilitating condition for life.”
A HSE review last year of Lymphoedema services throughout Ireland has yet to be published.
There is no cure for Lymphoedema. However, if diagnosed and treated early by an experienced specialist, the extreme swelling can be controlled and reduced, infection prevented and the range of movement of the affected area can be improved to limit the extent of the disorder and its impact on everyday life.
Professor of Vascular Disease Mary Paula Colgan said a delay in diagnosis and treatment leads to an increase in the incidence of complications including recurrent cellulitis, immobility and ulceration.
“We have excellent Lymphoedema therapists in Ireland in both the public and private sectors. As a clinician my greatest difficulty is accessing these services for patients as several areas of the country provide no services at all, while in other areas many of these services are unavailable for non-cancer patients.”
For more information see www.lymphireland.com or email email@example.com