Lifting a hairdryer again after more than a year of breast cancer treatment, hairdresser Victoria Lock began to feel a heavy, dragging ache in her left arm.
She had been diagnosed with cancer in April 2022, after finding a lump in her left breast when she turned over in bed.
It was a stage two (early) tumour that had spread to the lymph nodes in her left armpit.
‘Chemotherapy, surgery to remove my left breast and the affected lymph nodes, breast reconstruction and then radiotherapy – all in the space of a year – meant I had really been through the mill,’ says Victoria, 42, a single mum to Ethan, 16, who lives in Surbiton in Kingston upon Thames. ‘But at least I was clear of cancer.’
However, a few months after her radiotherapy finished in May 2023, Victoria noticed swelling in her reconstructed left breast.
‘I worried it meant the cancer was coming back – but my oncologist said it was lymphoedema [a chronic condition where fluid builds up due to damaged lymph nodes] and referred me to a lymphoedema clinic.’
Before her appointment, and while she was on holiday in September that year, Victoria’s left arm swelled dramatically – triggered, she thinks, by the hot weather.
Soon it was happening two or three times a week, usually after repetitive movements, such as drying her hair or vacuuming, but also even if she just got hot cooking.
‘I hated my fat arm,’ says Victoria Lock. ‘It was really debilitating and made me self-conscious’
‘My left arm would swell and was at least 50 per cent bigger than the right one at one point – it made my forearm look like Popeye’s,’ she recalls. ‘I hated my fat arm. It was really debilitating and made me self-conscious.’
The condition has also affected her ability to work, but she hopes this will change soon thanks to a pioneering surgical procedure for severe cases such as hers.
Lymphoedema, which affects an estimated 400,000 people in the UK, is where lymph fluid (part of the immune system) builds up in soft tissue causing swelling, most commonly in the arms and legs.
The lymphatic system is a network of thin tubes, nodes and glands throughout the body that filters out toxins and waste. If the nodes become blocked – or they’re removed due to cancer – it can cause a build-up of fluid. Lymphoedema is incurable but can be controlled.
‘When I heard that I started to worry about my future,’ says Victoria. ‘I’d been a hairdresser since I’d left school and didn’t have any other work experience.
‘And not only was it restricting movement in my arm, it was a constant reminder that I’d had breast cancer.’
Kelvin Ramsey, a consultant plastic and reconstructive surgeon at the Royal Marsden Hospital in London, says while lymphoedema can be caused by genes, it’s most commonly the result of cancer surgery, or radiotherapy, particularly for breast cancer that’s spread to the lymph nodes.
About one in five women who have had nodes removed due to breast cancer are affected.
Mr Ramsey explains: ‘The problem is that removing those lymph nodes blocks the drainage of fluid from that arm, so fluid builds up.’
Arms can double in size, he says, and patients are also prone to skin infections such as cellulitis – because the damaged lymphatic system is not draining infectious organisms.
Cellulitis makes the skin hot, swollen and painful, often causing even further damage to the lymphatic system.
Addie Mitchell, a clinical nurse specialist at the charity Breast Cancer Now, says: ‘Swelling can appear right after surgery, or later in recovery. It may also come and go, worsen at the end of the day, or increase after physical activity and in hot weather.’
Other symptoms include a feeling of tightness in the affected area (even without visible swelling), a dull ache, tingling or numbness, and dry, itchy or flaky skin (fluid build-up can stretch the skin and disrupt its natural oils).
The main treatment is compression sleeves that force lymphatic fluid out of the arm: these must be worn for life.
‘They do help but can be uncomfortable to wear and draw attention to the swollen arm,’ says Mr Ramsey.
Other treatments include manual lymphatic drainage, a skin-stretching massage that helps promote drainage of fluid out of the swollen limb into the bloodstream. It’s performed by lymphoedema nurse specialists.
Exercises to reduce arm swelling recommended by Macmillan Cancer Support include sitting down and supporting the affected arm at shoulder height with a cushion, making a fist and stretching out the fingers, repeating as many times as comfortable.
Swimming, walking, yoga and any form of exercise that encourages movement of lymphatic fluid through the lymph system may also reduce swelling.
Liposuction – extraction of fat and fluid via a vacuum pump – has been recommended by the National Institute for Health and Care Excellence (NICE) since 2022 in severe cases.
‘But even liposuction won’t cure lymphoedema and these women still have to wear compression garments for the rest of their lives,’ says Mr Ramsey.
Now, however, a surgical technique pioneered by surgeons at the Royal Marsden and other centres in the UK may help.
Called lymphovenous anastomosis (LVA), it involves redirecting excess fluid into nearby veins – so it can drain away from the area. Surgeons first make a few tiny incisions in the blocked lymph channels in the arm then use high-powered microscopes to help them surgically attach those vessels to surrounding veins.
This allows the fluid to bypass the blockage and it’s then either reabsorbed elsewhere in the body or excreted through urine. A pilot study in 2019, involving 27 patients, found it reduced swelling in 65 per cent of them, according to results published in the British Journal of Surgery.
But the procedure is not yet widely available on the NHS because of a lack of evidence to support it.
Now Mr Ramsey and his team have launched a major trial, called PRELUDE, to confirm findings from the pilot study suggesting the earlier LVA is performed after the onset of lymphoedema – ideally within six to 12 months – the better the results.
‘To be eligible [as well as needing a GP referral], your symptoms must have started within the last six months and result in a 10 per cent or more increase in arm swelling for at least a month,’ says Mr Ramsey.
‘Our hope is our research will change NICE guidance so the surgery can be offered to breast cancer patients more widely and at a much earlier stage,’ he adds.
The condition has also affected Victoria’s ability to work, but she hopes this will change soon thanks to an emerging surgical procedureÂ
The trial aims to recruit 64 women, who will be treated at the Royal Marsden and followed up for a year; half will have LVA and half will have standard treatment (exercise and compression therapy).
Mr Ramsey says existing surgical techniques, such as lymph node transfer – where undamaged lymph nodes from other parts of the body are used to replace the damaged ones in the armpit – can lead to side-effects such as lymphoedema at the site the lymph nodes are taken from.
Victoria was one of the first patients to undergo LVA last February.
‘The surgery was just a day case and very minor compared to my breast cancer surgery.’
Her left arm began to rapidly shrink down within a few weeks after the operation.
‘Before the surgery, it was 28 per cent bigger than the right arm but after three months it was only 5 per cent bigger. And after nine months, it was just 3 per cent bigger,’ she says.
‘I’m 95 per cent better – I can use a hairdryer again and hope to go back to hairdressing.’
Karen Friett, chief executive of the charity Lymphoedema Support Network, says they await the trial results with interest. ‘Once you have lymphoedema it’s for ever and it can impact every single aspect of your life – the clothes you wear or even whether you can wear your wedding ring,’ she says.
‘It’s not just a bit of arm swelling; the effects can be really underestimated.’
- For more information, go to cancerresearchuk.org
