Would you refuse lifesaving cancer therapy if meant losing your hair?

Would you refuse lifesaving cancer therapy if it meant losing your hair? Remarkably, because of the trauma, thousands are doing just that. As TV’s Cold Feet highlights the problem, we examine what more can be done to help those affected

One in 12 refuse or delay treatment due to psychological distress of losing hair
About 300,000 patients receive chemotherapy for cancer in England each year
5 to 10 per cent of patients suffer psychological trauma as a result of hair loss

Given the choice between life and death — treating a serious disease versus doing nothing — the answer is obvious, surely.

Yet quality of life is a key concern, and some patients are not willing to undergo perhaps gruelling treatment for the chance of extra time.

For those with cancer, the chemotherapy that can save their lives can also lead to extensive hair loss — and research suggests 8 per cent, one in 12, refuse or delay potentially life-saving treatment due to the psychological distress of losing their hair.

‘Hair loss is a source of massive contention and anxiety as it is a constant and public reminder that people are seriously sick,’ says Professor Justin Stebbing, a consultant oncologist at Imperial College Healthcare NHS Trust.

People often avoid talking about it, which is one reason a recent episode of Cold Feet, which featured the character played by actress Fay Ripley removing her wig to reveal the thinning hair caused by chemotherapy, won plaudits from fans and cancer charities alike

‘I have had patients refuse therapy because of this fear — with devastating consequences. But for some people having quantity of life is no good without quality, and hair loss is central to that.’

‘Certainly when I explain side-effects of chemotherapy, it is when I mention hair loss that patients break down,’ adds Professor Robert Thomas, a consultant oncologist at Bedford and Addenbrooke’s Hospitals. ‘Patients I’ve seen recently who’ve declined the extra benefits of chemo include a teacher and a policewoman because they couldn’t face going to work if they’d lost their hair. It can devastate lives.’

Such is the impact of hair loss that 5 to 10 per cent of patients suffer serious psychological trauma as a result, adds Professor Karol Sikora, a consultant oncologist in London.

He, too, has had patients decline life-saving cancer treatment for this reason: ‘I have a patient at the moment who I cannot persuade and yet her chances of surviving are much poorer without it,’ he says.

Around 300,000 patients receive chemotherapy for cancer in England alone each year.

According to research by Professor Diana Harcourt, director of the Centre for Appearance Research at the University of the West of England, the ‘vast majority’ had concerns over losing their hair.

‘It is another way that diagnosis and treatment are out of their control,’ she says. ‘It can make people feel so self-conscious that they stop socialising and their quality of life declines. Some patients told us that they slept in their wigs or got up early so their partners don’t see their bald heads.’

ARE DOCTORS DOING ENOUGH?

Yet there can be discord between doctors who focus on killing the cancer and patients ‘thinking more about what they’ll feel or look like’, says Prof Thomas.

Prof Sikora agrees: ‘Hair loss can be one of the most depressing features of cancer, but doctors are still learning about the true impact it can have — and adapting their approaches.

‘There may be other drugs we can offer that don’t cause hair loss, or we can tweak the regimen with lower doses, but these tend to be weaker against the cancer. If I had my way, I would convince patients every time that the benefits of treatment far outweigh the risks; but it is more challenging than that and I’m learning to be better at counselling.’

There can be discord between doctors who focus on killing the cancer and patients ‘thinking more about what they’ll feel or look like’ (file image)

In some cases the side-effect of hair loss may have been downplayed: in the U.S. patients have filed claims against pharmaceutical company Sanofi over the lack of warning of the risk of permanent hair loss with the drug Taxotere (docetaxel).

‘This is a common drug we prescribe for breast cancer,’ says Prof Sikora. ‘The concern here is that around 5 per cent of women experience permanent hair loss after using it, which is disastrous. There has been some question over whether Sanofi knew this was the case and didn’t warn patients or doctors.’

NEW WAYS TO STOP HAIR LOSS

Not all types of chemotherapy cause hair loss, although the types commonly used for breast and prostate cancers do. Researchers are trying to understand why hair loss occurs, and how to prevent it.

Chemotherapy targets rapidly dividing cells — this includes tumour cells but also those in the hair follicle (from which a hair grows), nails, skin and gut (which is why chemo can cause nausea).

How cancer spurred celebrity crimper to help patients

Wigs have come a long way and many now look more natural than ever. Yet, because this is not a medical problem, what the NHS can offer is limited.

To help bridge this gap celebrity hairdresser Trevor Sorbie has been seeing clients with chemotherapy-induced hair loss for more than a decade, and offers to cut and style their wigs free of charge.

‘A penny dropped 12 years ago after my sister-in-law lost her hair to chemotherapy,’ he says.

‘She had a wig but was distressed that she didn’t look like herself, so I cut it to make her feel special.

‘Clients tell me that losing hair can be as devastating as being told you have cancer. I’ve met four women who refused chemo rather than lose their hair.’ Trevor was diagnosed with bowel cancer seven months ago and underwent surgery; then a family member was diagnosed with cancer too, which motivated him to help patients.

‘Each specialist — surgeons, nurses, oncologists — has a role, but there aren’t enough resources for hair loss on the NHS, so hairdressers are filling in,’ he says.

Trevor set up the charity My New Hair to train hairdressers to cut wigs for cancer patients, and has been involved in lobbying MPs to push for better wig services for the NHS.

To find a trained hairdresser visit mynewhair.org

For some years patients have been offered cooling caps — lightweight, silicone caps with liquid coolant passing through — to wear during chemotherapy. ‘Cold caps work in a combination of ways,’ says Dr Nikolaos Georgopoulos, a cancer cell biologist at the University of Huddersfield. ‘First, by making the scalp cooler, you are restricting blood flow, meaning less chemotherapy gets to the hair follicles.

‘Second, laboratory studies suggest cooling hair cells slows down their metabolism, and takes them out of their normal cell division cycle — so they are less targeted by chemotherapy drugs that work on fast-dividing cells.

‘Third, a study we aim to publish soon has demonstrated that cooling inhibits the transport of the drug inside hair follicle cells, where it would have toxic effects.’

Studies into cold caps show they have a 50 per cent success rate for hair retention. Research is now trying to explain why they don’t work for everyone — one reason, Dr Georgopoulos, has found is that some patients have ‘hot heads’, meaning their scalps do not cool sufficiently.

‘We monitored head temperature with infrared imaging and cooled heads with cold caps. We found some heads cooled enough to prevent toxicity — reaching 18c — but others wouldn’t lower beyond 26c. This could be a reason why cool caps don’t work for everyone.’

He is now developing better fitting caps and finding ways to cool the scalp more efficiently. ‘For example, we are testing a lotion that contains a natural compound that increases the protective effect of cooling — in five to ten years this could mean the chances of not wearing a wig are closer to 90 per cent; currently they are 50 per cent,’ he says.

Cool caps are also not recommended for all patients, says Dr Felicity Paterson, a consultant clinical oncologist at Royal Surrey NHS Foundation Trust. ‘Those with diseases of the scalp or brain aren’t suitable for cold caps because as it cools hair follicles, it can also make the cells in the area unresponsive to their treatment.

Also, there is a slightly higher risk of developing disease in the brain in some aggressive breast cancers.’ Research is ongoing into drug-type approaches to aid hair regrowth. Among the most promising is bimatoprost, originally developed as a glaucoma drug. Doctors noted eyelash growth as a side-effect — and it has been shown to help in eyelash alopecia in a trial of 130 patients, reported The British Journal of Derm- atology in 2015.

Meanwhile, calcitriol, a form of vitamin D, was found to protect rats from chemotherapy-induced alopecia. Research also shows that using the drug minoxidil after chemo can halve the time for hair to regrow. A trial in 22 women who had chemotherapy for breast cancer found that applying minoxidil daily shortened the time it took for hair to grow back, reported the Journal of the American Academy of Dermatology in 1994.

The good news is that most new cancer drugs don’t cause hair loss, says Professor Stebbing (file image)

COULD EVENING TREATMENT HELP?

The good news is that most new cancer drugs don’t cause hair loss, says Professor Stebbing.

‘For example, monoclonal antibody drugs — which work by targeting specific proteins on the surface of cancer cells — don’t cause hair loss. Neither does immunotherapy, which enables the immune system to recognise and target cancer cells.’

Prof Sikora adds: ‘It is feasible that within five to ten years most drugs won’t cause hair loss.’

Taxane drugs, such as Taxotere are thought to be linked with permanent hair loss as they damage the stem cells in the follicles that help form hair.

A laboratory study by the University of Manchester found it was possible to coat follicles with another type of cancer drug, making them ‘less susceptible’ to the effect of taxanes, reported the journal EMBO Molecular Medicine.

Other researchers have looked into the timing of chemotherapy. A 2013 study by the University of Southern California suggested having treatment in the evening could prevent hair loss.

They found mouse hair had a circadian clock — a 24-hour cycle of growth followed by repair — and that mice lost 85 per cent of their hair if they received cancer therapy in the morning, compared to a 17 per cent loss if treated in the evening, reported the journal Proceedings of the National Academy of Sciences.

‘While we don’t yet know if human hair follows that same clock, [we know] facial hair in men grows during the day, resulting in the proverbial 5 o’clock shadow,’ said Professor Satchidananda Panda, the lead researcher and an expert on circadian rhythm.

Cancer cells do not have circadian clocks, because they are dividing all the time, meaning cancer therapy does not have to be timed to be more effective — the timing is about minimising damage to healthy cells such as hair.

NHS WIGS THAT DON’T SHAPE UP

For patients with hair loss, the NHS offers an allowance towards a wig — but this is something of a postcode lottery, says Dr Matthew Harries, a consultant dermatologist at Salford Royal NHS Foundation Trust.

Many patients go private at a cost of anything from £70, to thousands. As most chemotherapy does not harm the stem cells in a hair follicles, growth normally resumes within weeks of chemotherapy ending.

However, this hair is often different from the original; many patients experience curling or straightening and the hair is softer, like baby hair. ‘I have had patients who had gone grey and after chemo their hair grew back black or red,’ says Dr Paterson.

It can take around six months to get a full head of hair to return, but patients often receive little advice about how to boost regrowth, suggests Dr Harries.

As well as drugs, including minoxidil, simple measures such as using baby shampoo and not using heat or dyes can protect regrowing hair.

WOMAN WHO WORKS WONDERS AT THE CUTTING EDGE

Jennifer Effie, a hairdresser in London, has made it her life’s work to help those with hair loss. Not through traditional wigs but using a ‘hair replacement system’.

The idea is to duplicate how someone’s hair looked before hair loss. Jennifer explains: ‘I take strands of patients’ hair before they lose it and send this to one of two manufacturers: for blonde hair, it is shipped to Russia; for darker hair it goes to the Philippines.

Natural look: Yulia Baynham

‘They analyse the density and colour to create a long style and send it back, hand-stitched to a lace cap that is made to measure. This is then attached to the client’s scalp with a special adhesive, and styled as they wish.’

Clients return every month to have the cap taken off, the scalp and hair washed — then reapplied. Around 70 per cent of her clients are going through cancer treatment.

One of those she’s helped is Yulia Baynham, 44, a director at a global consulting firm, from West Sussex with husband Mark, and their teenagers Natasha and Daniel. She was diagnosed with breast cancer in January 2019 and experienced mouth ulcers, sleep problems and hot and cold flushes after treatment.

‘But the hair loss was the worst,’ she says. ‘I had long, thick blonde hair and took pride in my appearance. Nothing can prepare you for the horror.’

A colleague recommended the hair replacement system and it gave me back the confidence that chemotherapy stole, says Yulia. ‘The incredible part was my mother didn’t notice it wasn’t my real hair. It was totally worth it.’ This system costs around £2,000 to buy and £85 a month for ‘refreshing’. To find out about the system visit: jehair.com

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