Dealing With Lymphedema

Written by Charlotte Dovey

When Linda Parton defeated breast cancer – twice – she thought it was the end of her problems. In fact, it was just the beginning.

For, as a result of poor post-operative care, she developed lymphoedema, an incurable and hugely debilitating condition which causes painful swelling.

Linda Parton

Still in Pain: Linda Parton

Lymphoedema is caused by an impaired lymphatic system and affects 100,000 people in the UK, 25,000 of them after breast cancer surgery. The others are largely due to injury to, or infection of, the lymph vessels.

The lymphatic system clears unwanted protein and water from the tissues via the lymph vessels throughout the body. Lymphoedema occurs when the system is faulty in some way: fluid doesn’t drain from the tissue, but builds up, causing swelling or oedema.

While not all breast cancer patients develop the condition, their chances of developing it are greater because the lymph nodes are often removed during treatment, potentially damaging the lymphatic system.

The problem can be triggered by something as simple as having your blood pressure taken, which is what happened in Linda’s case. Other traumas that can set off the condition include lifting something heavy, a skin infection, a cut or insect bite.

In the early stages, the swelling – which usually affects either the arms or legs (the areas next to the armpit and groin, where glands are found) – may be slight, but over time, and if left untreated, the area may harden.

Cellulitis, a skin infection characterised by pain, redness, swelling and heat, can occur as a result of lymphoedema. If severe, it can be life-threatening.

Although lymphoedema is incurable, with the right post-operative care it is possible to help prevent it occurring in the first place.

Unfortunately, knowledge about the condition among some healthcare professionals is ‘fairly poor’, says Peter Mortimer, professor of dermatological medicine at St George’s Hospital, London, and an expert on the condition.

‘This means information on prevention isn’t always given to patients.

‘This is partly because it’s not fatal, which puts it low down on the healthcare agenda.’

In Linda’s case, the pain of lymphoedema was compounded by her belief that she could have avoided it.

After being diagnosed with cancer in her left breast in 2000, Linda, a retired chemist’s assistant from Tamworth, Staffordshire, had a lumpectomy to remove the cancerous tissue. She also had the lymph nodes removed from her left armpit, so doctors could check the cancer hadn’t spread.

In 2002, another lump was found, this time in her right breast, and she not only had the lymph nodes removed from her right armpit but also opted for a double mastectomy.

Having been given the all-clear following the surgery, Linda, 65, was looking forward to the future. However, within eight months, she became one of the 25 per cent of breast cancer survivors who develop lymphoedema.

‘After the lumpectomy and removal of my lymph nodes, the nurses stressed how careful you had to be to avoid infection and how important it was to look after yourself to prevent lymphoedema.’

Linda was absolutely fastidious. ‘I did gentle arm exercises to keep the fluid moving.

‘Beyond that I always wore gloves when out gardening, so as not to scratch myself, I was vigilant when abroad to avoid insect bites, taking antibiotics from my doctor to nip any infection in the bud.’

She went through the whole process again after the double mastectomy. After losing the lymph nodes on both sides, she was fitted with a Hickman line in her chest to allow blood samples to be taken and chemotherapy drugs to be administered without the worry of trauma to her arms and the risk of lymphoedema.

Everything was going well until she contracted an infection and was hospitalised for a week.

‘Despite being in the hospital where I’d had surgery, the staff at the assessment unit had no knowledge of lymphoedema. I recall them wanting to take blood from an arm.

‘I told them a Hickman line had been fitted because of the danger of developing the condition, but they said there was no one qualified to use it so my arm was the only option.

‘When it came to taking my blood pressure, they didn’t have a cuff long enough to do a reading from my leg so they used the arm.’

She asked for the left arm to be used, as those nodes had been removed first and had had the most time to recover.

But within weeks Linda noticed her left hand was swelling up and feeling hot. A few days later, when she couldn’t get her wedding ring on, her oncologist diagnosed lymphoedema in the hand and, to a lesser extent, the arm.

‘It set me right back,’ says Linda.

‘Having had a double mastectomy, then worked so hard at keeping things in check, to have it ruined by someone’s lack of awareness seemed unbelievable.’

The earlier the condition is treated the better, but the lack of dedicated lymphoedema clinics meant Linda had to wait three months for an appointment. Her hand and arm got more swollen.

‘My hand also became mottled, red and angry,’ Linda says.

‘Luckily, I was told I’d caught the condition early enough for it to be deemed manageable.

‘I was given exercises to maximise lymph drainage and was taught how to do manual lymphatic drainage – a form of massage that aims to redirect lymph fluid away from the swollen area. I was also told not to put strain on the affected areas, such as carrying something heavy.’

Skin care is also important – the advice is to use aqueous moisturising cream every day to prevent dry skin or flaking, which could lead to infection.

‘Finally, I was given compression garments – thick bandage tubes and gloves to wear on my left arm and hand every day,’ Linda says.

‘Even doing that, I experience a constant, 24-hour dull ache. Overworking the hand and arm can lead to painful pins and needles. At the end of the day my hand and arm can throb so much I have to take painkillers.’

Linda’s life started to get back on track. But then, on a visit to see her local GP about dizzy spells in April 2006, Linda found herself in a familiar situation.

‘My GP wanted to take a blood pressure reading, but she didn’t have a cuff long enough to take the reading from my leg.

‘I presented her with my Lymphoedema Support Network card, similar to a donor card, which said no procedures were to be carried out on affected areas.

‘But with heart problems in my family, my doctor insisted we had to check there was nothing seriously wrong, so she took a reading from my right arm.’

A week later the dreaded symptoms appeared. First Linda’s watch strap started to feel tight, then her knuckles felt swollen and she was unable to clench her fist.

‘I visited the lymphoedema clinic straightaway, and within minutes they diagnosed me as having it in the right arm and hand. A matching pair – all, I believe, due to poor treatment. Now, a year on, and I’m back to visiting the clinic every four months.

‘The condition hasn’t got any worse nor has it got any better. But it has certainly affected my life. I can’t lift up my two-year-old granddaughter for a cuddle, because it could worsen the condition. I wear the compression garments all the time, and I hate the summer when they are so visible.

Worst of all, I hate that I can no longer wear my wedding ring, despite having had it enlarged once already.

‘Developing a life-long condition due to bad lifestyle or hereditary factors is something you have to accept.

‘But developing one because of the lack of awareness of healthcare professionals is not easy to cope with.’

(This article was originally published under the title “Linda was saved from cancer – but bungling doctors left her suffering for life” in the Daily Mail and can be found online at

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