After surgery and radiotherapy for breast cancer, Marie Jones was prescribed a daily pill to reduce the chances of the disease returning. But just three weeks into the planned five-year course of treatment, she ditched the tablets.
‘I know some people might think I’m mad for not doing everything possible to reduce my risk,’ says Marie, 54, a PR consultant, who lives in Belfast, Northern Ireland, with husband Paddy, 56, a decorator, and has three grown-up children.
‘But my menopause side-effects came back with a vengeance after I started taking the drug [letrozole].
‘I had terrible night sweats that soaked my pyjamas and bedsheets. My head was fuzzy with brain fog — I was exhausted at work and a bit of a mess.
‘Worst of all I had very painful aching joints all over my body. I couldn’t even type on my keyboard without being in agony. After nearly a month I’d had enough of the pain and hormonal symptoms and stopped taking it.’
Marie Jones, 54, was prescribed a daily pill to reduce the chances of her breast cancer returning but she ditched the tablets just three weeks into the five-year course of treatment
The decision to stop treatment and take her chances with breast cancer instead wasn’t one that Marie took lightly, or without fully assessing the risks.
‘I was diagnosed with stage 1 tubular breast cancer, a rare non-aggressive type, picked up on a routine scan two years ago.
‘I was lucky in that it was caught early and I only needed a lumpectomy and radiotherapy.
‘But it was low grade and hadn’t spread,’ says Marie.
She is one of many breast cancer patients unwilling to take what the doctor ordered.
Another breast cancer drug, tamoxifen, estimated to prevent 40,000 cases of breast cancer recurrence worldwide every year, also has a high dropout rate. One study by Trinity College Dublin, published in the journal Oncology in 2007, found almost one in four (22 per cent) women who’d been prescribed tamoxifen dropped out of their five-year treatment cycle after a year.
By the end of the second year this jumped to 28 per cent, and after three-and-a-half years more than a third had stopped taking it.
Intense menopause symptoms (the drugs put you in menopause overnight) such as hot flushes, vaginal dryness and sexual problems were the main reasons for dropping out.
Anecdotal evidence suggests between a fifth and a third of breast cancer patients abandon treatment due to side-effects, says Dr Liz O’Riordan, a former breast cancer surgeon, who has been treated for breast cancer and hosts the podcast So Now I’ve Got Breast Cancer.
‘I’d thought about stopping [the drugs] myself but carried on, and most of the time symptoms do settle down within a year,’ she says.
Yet she emphasises there are things that can be done to mitigate the risk of side-effects and allow women to stay on the medication.
‘A lot of breast cancer health care professionals are not aware of the treatments that can now be given to help with menopause symptoms as an alternative to HRT,’ says Dr O’Riordan.
This includes vaginal oestrogen, which is not thought to heighten cancer risk as it does not circulate anywhere near at-risk breast cancer tissue. She also says adopting a healthier lifestyle — with a good diet, regular exercise and plenty of sleep — can help offset the side-effects.
‘If you are struggling, it’s worth asking your doctor by how much the drugs will reduce your risk of recurrence — for me it was a 20 to 30 per cent reduction.’
She felt this was a significant reduction, so continued to take her drugs.
The risk reduction depends on your tumour size, grade, your age, and the number of involved lymph nodes (tiny nodules where breast cancer often spreads to first).
These were the kinds of calculations Marie made. Initially, when her consultant recommended taking the daily hormone treatment to reduce the chances of her hormone-sensitive cancer coming back, Marie agreed.
It is estimated that between a third and half of medication prescribed for long-term conditions – such as high blood pressure – are not taken as recommended
Letrozole works by lowering the levels of the female sex hormone oestrogen, which stimulates some breast cancers (such as the one Marie had) and is given to postmenopausal women who’ve had breast cancer to reduce their oestrogen as much as possible, or to women who are at high risk of it.
Yet within a few weeks, Marie was plagued with side-effects so unbearable she discontinued treatment — she’d been told that tubular breast cancer has a ten-year survival rate estimated at between 99 to 100 per cent and recurrence is rare.
As well as the cancer being caught early, she is a non-smoker who doesn’t drink alcohol, is not overweight and has no family history of the disease.
‘I’ve read up about the risks of not taking letrozole and I’ve decided to take my chances,’ she says. ‘I’m so grateful for all the treatment I’ve had, but I can’t stand years and years of side-effects when there is such a small chance of recurrence.’
Choosing not to take prescribed medication is not uncommon. The National Institute for Health and Care Excellence estimates that between a third and half of medication prescribed for long-term conditions — such as high blood pressure, high cholesterol and osteoporosis (thinning bones) — are not taken as recommended.
Many patients regularly miss doses, for example, due to poor recall and difficulties understanding instructions, but also due to their own beliefs about the treatment and their motivation to take it.
As Dr Frances Goodhart, a consultant clinical psychologist and author of The Cancer Survivor’s Companion, explains: ‘It can be really hard to take pills so that something won’t happen, particularly if you experience unpleasant side-effects, as there’s no short-term positive impact that you can easily identify.’
Good Health columnist GP Dr Martin Scurr says the highest rates of non-compliance are in patients taking medication where they don’t feel any immediate benefits from them — such as drugs for high blood pressure or raised cholesterol.
Studies show blood pressure pills can reduce the risk of a stroke by 30 per cent and a heart attack by 15 per cent — yet an estimated 50 to 80 per cent of patients don’t take them, according to Public Health England data.
‘People take them for a while, don’t feel any different and may get a side-effect, tell themselves they’re doing more exercise and are reducing stress with a meditation app and stop taking them,’ says Dr Scurr.
It’s a similar story with statins. Around eight million people in the UK are prescribed the cholesterol-lowering drugs yet a 2018 study by Leicester University, published in JAMA Network Open, found at a six-year follow-up that half had stopped taking their statins, which they should be on for life.
Previous research by Columbia University in 2013 found that after three months only 61 per cent of patients were taking statins regularly as prescribed (while some were not taking them at all, others took them intermittently), and this fell to 55 per cent after six months.
Janice Newby, a 64-year-old from West Yorkshire, has an inherited form of high cholesterol called familial hypercholesterolemia (FH) which puts her at a much greater risk of a heart attack.
The decision to stop treatment and take her chances with breast cancer wasn’t one that Marie took lightly, or without fully assessing the risks
It affects about 220,000 people in the UK and without treatment, roughly half of affected men will suffer a potentially fatal heart attack by the age of 50 (in women it’s about 30 per cent by the age of 60).
Yet Janice quit taking statins three years ago — ground down by her side-effects and unconvinced the drugs really did reduce her risk.
‘After seven years on and off them, I just couldn’t carry on — I had stabbing muscle pain in my legs and feet and stiffness in both shoulders, tendonitis in my wrist and a terrible brain fog. All of them went immediately after I stopped taking the pills,’ recalls Janice.
‘I keep being asked by doctors to take them and by the FH nurse at hospital — even the community pharmacist rang me, but I just don’t want to.
‘I have perfect blood pressure, a healthy body mass index and I walk 30,000 steps a day at work,’ says Janice, who is employed in a warehouse. ‘I think my lifestyle is more protective than any pills.’
She adds: ‘My cholesterol reading last time was 8.5 [anything over 5 is high].
‘It was 5 when I took statins. But I’ve read it’s inflammation that causes heart attacks, not cholesterol. If someone offered me £1million, I still wouldn’t take statins.’
It’s something that troubles many, as highlighted by the huge response to a recent column by Dr Scurr when he responded to a reader who didn’t want to take statins because as a slim, healthy woman she felt her risk of a heart attack in the next ten years (which had been calculated at 14 per cent with the online QRISK3 tool used by doctors) was low.
Many readers questioned if they really needed the drugs, others felt pressured into taking higher doses by their GP when they thought their cholesterol levels were not that high.
Dr Scurr stresses statins are proven to prevent heart attacks and strokes, and that the rosuvastatin (Crestor) JUPITER trial was stopped early in 2008 because the results were so good in terms of prevention.
‘Only 5 per cent of the trial participants dropped out because of side-effects — but the story is out there that they cause joint or muscle pain and that all the aches and pains of middle age are down to being on statins,’ says Dr Scurr.
‘The problem is people don’t feel immediate benefits for statins and don’t look to the long-term benefits. You need some sort of barometer to show patients that the drugs are doing them some good.’
He asks his patients to fill in the QRISK3 tool themselves — this asks for details such as age, cholesterol level, blood pressure, BMI and family history of heart attacks and the algorithm calculates the percentage likelihood of a heart attack or stroke in the next ten years.
‘It’s motivating because if you take statins or make lifestyle changes such as losing weight or giving up smoking you can see your percentage risk going down after a few weeks or months.’
But Dr Scurr acknowledges doctors can be to blame.
‘On occasion they don’t spend enough time, or take enough care, explaining the reasons for the treatments, the potential benefits and potential side-effects and the balance between the two.
‘Dare I say, some want to bang out a prescription and get the patients out the door.’
Dr Charlotte Hilton, a Derbyshire-based psychologist who works in NHS primary care, says research has shown being given a choice as to whether to take medication, plus advice on how to take it and the relatability of a medicine (such as knowing other people who take it, and having advice from peer support groups), may all make compliance more likely.
‘Primary care has a broad spectrum of health care professionals including practice nurses and pharmacists who can advise on how to take medication and the benefits and side-effects — not just GPs,’ says Dr Hilton.
Dr Scurr says that patients can be influenced more by what they see on social media, or what their friends and relatives think about a drug.
‘But the problem with educating yourself online is you may choose the research that fits with your preconceived notions — in other words your unconscious bias switches in,’ he says.
Misinterpreting statistics about side-effects on the drug information leaflets is another issue.
‘Anxious and diligent patients read the data sheet very carefully and they’ll hook on to anything that gives them an excuse not to take a chemical,’ says Dr Scurr.
‘Others read about drug company profits and think that taking medication is all about making money and that it’s being pushed in their direction by someone getting a backhander. Some people don’t even believe that GPs are not incentivised to prescribe chemicals.’
But often it’s down to that quality-of-life decision, as was the case for Marie. ‘I’m not saying it’s not worth it for everyone, far from it, if I could have tolerated it, I would have stuck with it and might have felt differently if my cancer was stage 3 or aggressive,’ she says.
Dr Goodhart adds: ‘The impact of side-effects can be under-played or not recognised by health professionals. Sometimes people make an active choice that they’d rather not take medicines and thereby potentially reduce their life expectancy because they want a better, more meaningful quality of life.
‘Not taking medication is not about someone being difficult or challenging — it is far more nuanced than that. People can be exhausted by their experience of illness and treatment and taking a pill can be a constant reminder of their illness.’
