IMAGINE saying no to something that could save your life.
It seems inconceivable, but that is exactly what some cancer patients are choosing to do in a shift that has doctors worried.
A small but growing number of patients are opting to shun conventional treatment in favour of unproven alternative therapies with sometimes tragic consequences.
Health professionals are so concerned they have begun to discuss ways to better support patients in making decisions based on scientific evidence rather than the promises of unproven “cancer cure-alls”.
Respected breast cancer surgeon Christobel Saunders said anecdotal evidence pointed to more women refusing treatment entirely or insisting on a combination of conventional and alternative therapy.
“There’s a number of sad stories around that of women … either presenting very late with disease, or what was once a curable disease becoming incurable,” she said.
These women suffered not just from the effects of ongoing cancer but also from side effects of the alternative treatments they were taking. They were often also financially worse off after paying for expensive and useless “therapies”.
Melissa Ledger, Cancer Council cancer prevention and research director, said health professionals across the cancer specialties had shared stories of patients refusing their treatment plans. But there was as yet no published data on how big the problem was.
“Specialists are saying we are noticing people are refusing treatment and then they are coming back at a stage when there are not as as many options available, their disease is more advanced,” she said.
“They are concerned about their patients who may otherwise have survived their cancer and so they have turned to us to see what the Cancer Council can do to try and talk about the issue.”
Driving the trend, according to Professor Saunders, is an unhealthy belief in “miracle cures” that turn up in Google searches and unregulated alternative practitioners pushing unproven treatments.
In her experience patients who chose alternative treatments were often young, fit and well educated, but with a sceptical attitude towards conventional medicine.
“I’ve had patients where there has definitely been coercion from other family members, husband or whatever and occasionally mental health issues, but very rarely,” she said.
Professor Saunders said a cancer diagnosis was frightening and it was understandable that people would question their treatment plan and she admits medical professionals are not always good at “marketing” conventional strategies.
The list of cancer cure-alls promoted on the internet is endless: from mistletoe injections to spider venom, to coffee enemas. The problem is that few have scientific evidence to back their usefulness and some are even harmful.
WA is not immune from dodgy practitioners pushing potentially harmful treatments.
In 2014, former Perth doctor Alexandra Boyd was fined for deceptive conduct for false claims around an alternative breast screening device said to use electrical currents or thermal imaging.
She was also associated with a company that administered a “manifestly unsafe” so-called cancer cure that hastened the deaths of four women.
Black salve, a corrosive solvent used as an alternative cancer treatment, has also come under scrutiny from WA health authorities.
It is illegal to sell the balm, which can cause horrific burns and is also known as red salve and cansema, but specialists suspect some patients are still being encouraged to use it.
Paula Watt, a clinical psychologist specialising in psycho-oncology, said fear was a significant driver for patients to refuse treatment.
This was particularly the case for those emotionally scarred after their own experiences or from watching family members or friends go through cancer treatment, especially chemotherapy and radiotherapy which could have serious side effects.
“The other factor is needing to have some sort of autonomy or control over their treatment. Uncertainty is huge in everyone’s life when they are diagnosed with cancer so it is trying to get some sort of control back.”
“Sometimes people have gone through life without good secure attachments and they can be very avoidant in their approach, that means they can procrastinate or sweep things under the carpet or not think about things.
“And then there are other people who say ‘OK Doc, I’ll just do anything you tell me to do’.”
Good communication between the medical team and the patient was crucial, according to Ms Watt.
“The patient might say ‘I don’t want to do that now, doctor’ but the team can they leave the door open to come back and communicate or to try again later if they decide to have treatment.”
Some patients chose to accept surgery only and nothing else. Magical thinking also had a part to play, where patients preferred to believe there was an easier path to a cure.
Professor Saunders said patients often had the support of their partners to try alternative therapies in the early stages of their cancer but that could change when the consequences of that decision was realised.
“The sad thing is they may support each other for a while because early cancer is not usually painful, it usually has relatively minor effects. It is not until it gets really late and nasty that things start to get bad and awful,” she said.
“When you see your partner suffering with a horrible fungating tumour of their chest wall, that might be when you start to really think, ‘Gosh what did we do?’.”
Professor Saunders said medicos had to try to ensure patients who wanted something other than conventional treatment did not become completely alienated from traditional medicine.
“I think we should acknowledge there are other forms of wisdom and then, within the bounds of safety, try to work with patients. I think if we do that you can eventually get patients on board,” she said.
Some complementary therapies such as massage, yoga and meditation helped patients cope with the side-effects of treatment or psychological issues that can arise during cancer treatment.
“I don’t ever refuse to see those people again or support those people through what they are doing, for me that is the wrong approach,” Professor Saunders said.
“I think you should continue to care for a person as long as they are of sound mind whatever they choose to do but explain the medical evidence.”
Professor Saunders said health professionals needed to be educated, along with patients, about what alternative therapies were out there and the evidence available.
The US-based Memorial Sloan Kettering Cancer Center has set out to help, its About Herbs website is a useful tool that has the latest scientific information about which herbs, vitamins and over-the counter dietary supplements may be helpful or harmful for cancer patients.
“Any alternative practitioner who starts to tell you that what they are doing will cure you and conventional treatment won’t I think should definitely be a red flag for the public,” Professor Saunders said.
Another red flag was anecdotal testimonials, which could be deceptive.
Along with better education, Professor Saunders wants authorities to be given “more teeth” to pursue shonky operators.
At the moment the onus is on those complaining to prove the guilt of practitioners doing the wrong thing.
For accurate information call Cancer Council WA on 13 11 20 or go to their website.
The Apple co-founder, who died of pancreatic cancer in 2011, reportedly came to regret a decision to reject surgery in favour of alternative treatments including acupuncture, dietary supplements and juices for nine months after his diagnosis.
Though he eventually had the surgery and went on to seek cutting-edge experimental methods, they were not enough to save him.
His biographer Walter Isaacson said that when he asked Jobs why he had resisted it, Jobs said “I didn’t want my body to be opened … I didn’t want to be violated in that way.”
“I think that he kind of felt that if you ignore something,” Isaacson said. “If you don’t want something to exist, you can have magical thinking. And it had worked for him in the past.”
A wellness blogger, Jess Ainscough declined conventional therapy for rare cancer epithelioid sarcoma which would have seen her arm amputated at the shoulder blade.
Ainscough spent several years after the diagnosis of her slow-growing cancer as “The Wellness Warrior” capturing the public’s imagination and selling out book tours around the nation, including events in Perth.
She promoted Gerson Therapy which involved eating only a plant-based diet, drinking fresh juice every hour for 13 hours and up to five coffee enemas every day.
And, when her mother was diagnosed with breast cancer, she too, decided to eschew conventional treatment and opt for Gerson therapy.
She died in 2013, followed by her daughter in 2015.
Perth girl Tamar was diagnosed with a rare cancer in 2009, but her parents Arely and Trevor ignored the advice of doctors choosing instead to use herbal remedies, including mud packs made of red clay.
Doctors made an urgent application to WA’s Supreme Court to ask a judge to order Tamar to receive chemotherapy, but Mrs Stitt and her daughter fled Australia for El Salvador where Tamar died two months later.
A coronial inquest found Tamar could have been been saved with chemotherapy and her parents did not act in her best interests.
Alastair Nuttall, a doctor who told Tamar’s parents that their red clay and herb treatments were producing “very encouraging results” hours before they fled the country with her, was reprimanded for his reprehensible conduct by the State Administrative Tribunal and suspended for one year.
Oshin Kiszko died after a year-long battle that played out in WA’s courts.
After he was diagnosed with a malignant brain tumour in 2015, his parents Adrian opposed doctors wanting to give Oshin radiation therapy.
Doctors estimated that Oshin had a 50 to 60 per cent chance of being alive in five years if he had chemotherapy and radiotherapy but as time passed, Oshin’s chances of survival diminished.
His parents fought for his right to die in peace and with dignity, believing the quality of their son’s life should be prioritised over its length.
They won their unprecedented legal battle with doctors to end the six-year-old’s treatment.
Diagnosed with rectal cancer in 2003 Penelope Dingle opted for alternative treatments, including homeopathy, instead of traditional cancer therapy.
A 2010 coronial inquest into her death found her husband Peter Dingle and homeopath Francine Scrayen had played important roles in the decision to ignore conventional treatment.
Perth GP William Henry Barnes was suspended for three months for treating Ms Dingle with alternative therapies costing $20,000 that were sold by a company of which he was a director.
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