‘Lymphoedema is worse than cancer. It is very complex and it doesn’t let go’

Audrey Tynan keeps a packed bag in her bedroom and always has someone on call to bring her to hospital in the event of an emergency.

The soft-spoken part-time office manager is coping with the life-changing impact of lymphoedema, a condition which has brought with it both the problem of recurring cellulitis, a bacterial infection in the skin, and the constant fear of sepsis – a life-threatening condition which occurs when the body’s response to infection causes injury to its own tissues and organs.

“Lymphoedema has had a huge impact on my life,” observes Tynan, mother of a 24-year-old son and now in her 50s.

Her condition can be traced back to necessary surgery she received to treat aggressive cervical cancer in 2001. The treatment included a radical hysterectomy and the removal of lymph nodes, followed by chemotherapy and radiation therapy.

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“I got on with my life after the treatment finished,” she recalls. “It was harsh but I got through it.”

Everything returned to normal until 2008, when Tynan began to experience pain and swelling in her right leg. “It started gradually. My leg became very swollen and very tender. It was easily twice its normal size and very hard to the touch.”

Tests revealed a tumour on a para-aortic lymph node, treatment for which involved major open surgery followed by more chemotherapy and radiation for six weeks.

Hugely debilitating

It was a hugely debilitating process, but Tynan’s problems weren’t over.

During the period in which she was receiving radiotherapy, the Blanchardstown resident noticed a change in the size of her right leg and that she was limping and in pain.

“My leg was continuing to swell because the removal of the node was throwing my lymphatic system out of sync and the lymph was not flowing properly through my system,” she explains. “This was the start of major lymphoedema, which involved fluid gathering in my right leg – up to four litres of extra fluid!”

Lymphoedema occurs when the lymph system is disrupted. The lymph system is a full-body circulation system, and, when there is an interruption to the flow of lymph in any part of the body, a swelling occurs below the obstruction. Although lymphoedema is associated with any condition that obstructs the flow of lymph through the body, cancer is the most frequent cause.

Gynaecological cancers are malignancies of the ovary, womb, cervix, vagina and vulva which account for one in every eight cancers in women. These cancers spread through the lymph channels of the pelvis and groin.

"The lymph nodes of the pelvis and groin drains the genitalia and legs. Lymphoedema of these parts is common after surgery and radiotherapy used in the treatment of gynaecological cancers," explains Dr Noreen Gleeson, gynaecological oncologist at St James's Hospital and associate professor in gynaecology at Trinity College. "At the earliest stage, lymphoedema is mild with soft swelling of the legs or genitalia that resolves when the woman rests and elevates her legs. It can progress to where the swelling is permanent.

“In the most severe cases, the lymph fluid leaks into the tissues and even weeps through the skin. The swollen skin becomes brawny hard and serious infections such as cellulitis or sepsis can result.”

Tynan’s right leg swelled to twice the size of her left, and the shoe size for her right foot increased from size four to six.

This was the start of chronic lymphoedema as well as repeated episodes of cellulitis, which have sometimes developed into sepsis, requiring regular admission to hospital for IV antibiotics.

Once sepsis kicks in, a patient’s condition deteriorates rapidly.

Tynan now carries a letter with her explaining her condition and how quickly it can progress, along with information on the combination of antibiotics that have worked for her in past admissions.

Treatment of lymphoedema is challenging, acknowledges Dr Gleeson. At the early stages, she says, compression stockings and body garments, massage and elevation of the legs can relieve symptoms and prevent progression.

However, for more severe and complicated swelling, manual lymph drainage and intensive bandaging by specialist therapists is recommended, she says.

This treatment is provided by specialised physiotherapists called lymphologists.

“There is a difficulty in accessing these experts in this country – there is a shortage in terms of numbers and the treatment is also expensive,” she says, adding that a session can cost up to €100. “The question is how often does a person need sessions – the more frequent the sessions the more successful the treatment. It involves physical compression of the leg to reduce the swelling and get the lymph flowing again.”

Too few specialists

There are too few such specialists in Ireland, believes Dr Gleeson – she says that some women who went abroad for intensive treatments found they were unable to access maintenance therapy in Ireland on their return.

The provision of compression stockings powered by pumps to help control the condition are currently under investigation, she says, adding, however, that prevention of the problem is best.

Currently says Dr Gleeson, gynaecological cancer surgeons are investigating whether they can remove fewer nodes without compromising cure rates. “The current standard surgery, removing all the lymph nodes inside the pelvis, interferes with the flow of fluid in the lymph circulation from the legs and genitalia,” explains Dr Gleeson. “As a result, some women, like Audrey, develop very debilitating health problems like swelling of their legs or genitalia (lymphoedema) or recurring infection (lymphangitis), and even sepsis as a result of the complete removal of the lymph nodes.”

However, she adds: “Removal of the first node draining the lymph from the cancer site – called the sentinel node – could replace the complete removal of lymph nodes in some cancers. This sentinel node technique is well established for other malignancies, such as breast cancer and melanoma.”

Removing only the sentinel node in cancer surgery protects the flow of lymph, explains Dr Gleeson. “Since its introduction for vulval cancer we have seen a big reduction in the incidence and severity of lymphoedema.”

However, identifying the sentinel node at pelvic surgery requires special imaging equipment, she explains, pointing out that, thanks to the Emer Casey Foundation and Trinity MedDay Fund, St James’s Hospital now has state-of-the-art €100,000 laparosocopic fluorescent imaging equipment that facilitates sentinel node mapping in women undergoing gynaecological cancer surgery.

“Gynaecological oncologists would hope that this state-of-the-art equipment would be made available to all pelvic surgeons looking after women with gynaecological cancers,” she adds.

For Tynan, an initial concern was about the difficulty she was experiencing in finding clothes to cloak her swollen leg. However, the physical impact of the condition quickly became obvious – she can’t walk far without getting extremely tired and experiencing swelling of the leg.

There is also the constant fear of infection and having to be rushed to hospital. “Last year I had four infections of cellulitis and to date this year I have had four to five attacks. I now carry a double antibiotic which can treat the cellulitis if I catch it in time, but this requires constant watching and monitoring of my leg.

‘Constant fear’

“Cellulitis can hit at any time – I watch for a little rash on my leg if I start to feel unwell, but cellulitis changes its presentation so you don’t always know it’s coming on. You can also get a very high temperature and vomiting. There is constant fear, because the rapidity of the onset of sepsis is incredible. Once it hits, you only have an hour or two to get to hospital for treatment – you could become unconscious within four to six hours.”

Tynan has found the lack of accessible specialised lymphoedema care very difficult to deal with. “This is a huge issue for anyone with lymphoedema – there seems to be no specialised services to deal with it and what is there is extremely limited. In an ideal world, I should have regular access to a lymphoedema physiotherapist, but it’s very difficult to get regular appointments because there are so very few of them and they are booked out months in advance – in order for it to be effective you need that treatment every day.”

She’s now using a special pair of lymphatic pump boots to help manage the condition – these were funded through the St James’s Hospital Foundation’s Lymphoedema Fund. “Lymphoedema is worse than cancer,” she says. “It is very complex and it doesn’t let go – it’s a constant threat to my health.”

What is lymphoedema?

There are two major circulation systems in the body. One is of blood. The other is of lymph. Lymph fluid circulates through channels and nodes that are also call lymph glands. Cancers spread through the lymph channels to these nodes and cancer can obstruct the flow. The removal of lymph nodes during surgery interrupts the flow of the lymph fluid. Radiotherapy can reduce lymph flow. The resultant stasis of flow causes swelling of the body part drained by the lymph channels. That swelling is called lymphoedema.