Holding out for a miracle

DO alternative therapies have a part to play in treating cancer - or do they simply give false hope to desperate people?

holding out for a miracle

JESSICA Ainscough was 22 when small bumps began appearing up and down her left arm. The budding young journalist and online editor for Dolly magazine consulted a specialist who biopsied the lumps and delivered devastating news: her arm was riddled with epithelioid sarcoma, a rare cancer that is difficult to treat.

Ainscough agreed to let an oncologist pump the arm full of chemotherapy drugs; it swelled horribly and subsided, and the multitude of tumours inside it seemed to die off. But within a year they were back, and Ainscough was told that her best hope of beating the disease was to have the arm amputated. By then, however, she already knew about the Gerson Institute, a California-based holistic health centre which claims to have healed thousands of incurable cancer patients at its clinics in Hungary and Mexico.

Ainscough told her doctors she was declining all further conventional medical treatment to follow the Gerson therapy of radical detoxification. "They were unimpressed," she recalls today. "They said I would die, basically. They used the phrase 'nail in your coffin'."

More than two years later, she looks a picture of health and exudes seemingly irrepressible optimism. Since that final exchange with her doctors in early 2010 she has followed the Gerson regimen of up to 10 raw juices and five coffee-enemas a day, along with mineral supplements and a strict vegan diet. In April 2010 she spent $15,000 on a three-week stay at the Gerson clinic in Tijuana, Mexico, and she has also launched a website, The Wellness Warrior, where she posts advice and updates on her condition. It was on the website that Ainscough revealed last year that her mother Sharyn, 55, is suffering from breast cancer and has also renounced all conventional treatment in favour of Gerson therapy.

In the home they share on Queensland's Sunshine Coast, the two women are now taking the "Gerson journey" together and sharing it with the world via the website. Sharyn Ainscough still consults a GP, but has declined any scans or biopsies which would help pinpoint exactly what type of breast cancer she has. "I was very adamant I was not going down the medical road at all," she says. "I feel the body, mind and spirit is what needs to be healed."

It's an attitude many people share, judging by the messages of congratulation that flood The Wellness Warrior and other websites launched by like-minded cancer sufferers. Last year Perth mother-of-four Gemma Bond staged her own public renunciation of conventional medicine after being diagnosed with ovarian and uterine cancer. After agreeing to a hysterectomy on her doctor's recommendation, Bond declined all further treatment in favour of a regime of coffee enemas, ozone therapy, intravenous vitamins and supplements - a path her daughter Laura is now chronicling in the blog Mum's Not Having Chemo. In Victoria, naturopath Cheryl Reid runs a website inspired by the experience of her husband Paul, who believes he was healed from lymphoma through natural therapies.

The theme in all these cases is that natural remedies are superior to the toxic and traumatising effects of chemotherapy and radiation, and that healing is in large part a matter of belief. "When I was deciding between conventional and Gerson therapy," recalls Jessica Ainscough, "I went from a system that told me I was inevitably going to die to a system that said as long as I do everything to bring my body back into balance, as long as I take responsibility for my healing, there was no reason I couldn't heal."

Grace Gawler is familiar with that thinking; for most of her adult life she devoted herself to spreading the message that diet and the mind are the keys to defeating cancer. In 1976 her then-boyfriend Ian Gawler was given only weeks to live after cancers were found in his lungs, pelvis and lymphatic system. With bony masses sprouting from his chest, Ian embarked on a healing odyssey: he underwent chemotherapy and radiotherapy, consulted gurus in India and psychic healers in the Philippines, began intensive meditation and adopted the Gerson regimen. In 1978, to the amazement of his doctors, he was declared cancer-free and has remained so ever since. The Gawlers established a foundation and healing program in Victoria that has since attracted thousands of sufferers to its precepts of recovery through meditation and diet.

Since the couple separated in 1997, however, their beliefs have taken radically different trajectories. Ian Gawler continues to argue that he is living proof that meditation is "the single most powerful tool" for recovery. But Grace Gawler, who now practices as a naturopath in Queensland, has come to doubt her ex-husband's account of his recovery, and is alarmed at the numbers of cancer sufferers who are now shunning proper medical care in favour of miracle cures. "There is a huge belief out there that cancer can be cured naturally, but after 38 years in this field and seeing more than 14,000 patients, I don't buy it," she says. "I do see that people can get increased levels of wellbeing from alternative treatments, but that can also be a problem - because people can feel well and think their cancer is getting better, when in fact their cancer is rocketing along in ways that medical science would have expected. And by the time they have secondary tumours in their liver or their lymphatic system, it's too late."

Between Grace Gawler's scepticism and Jessica Ainscough's faith lies the gulf that separates Western medicine and the ideas of "holistic" healing, a gulf the internet often seems to be widening. Cancer patients today can learn far more about the treatments doctors offer than any previous generation, and much of it is sobering. The side-effects of chemotherapy and radiation can be punishing, and their effectiveness is often a matter of debate even among medical experts.

The internet also swirls with stories of recovery for which medicine can offer no explanation. NSW grandmother Kathleen Evans recovered from untreatable brain and lung tumours after praying to Mary MacKillop; Petrea King, who founded the holistic organisation Quest For Life 23 years ago, achieved remission from leukemia after meditating 18 hours a day in an Italian monastery. King is today working closely with doctors and hospitals to integrate medical and holistic ideas, but says she has seen cases of people achieving remission from cancer without medical intervention. "I'm a great believer in people being free to choose their own path," she says.

But the world of alternative health has also become a repository for dark conspiracy theories about cancer - the notion that doctors and drug companies deliberately suppress information about natural cures in order to make money from costly but useless "cut, poison and burn" treatments. It's a view promoted by any number of "healers" peddling cures in the open marketplace of the internet. And a measure of the enormous suffering it can cause can be found in a report posted online two months ago by the government of Western Australia.

The title is blandly bureaucratic, but Record Of Investigation Of Death - Ref No: 36/10 is 281 pages of horrific reading. In it, deputy coroner Evelyn Vicker details how roughly 20 terminal cancer patients paid as much as $40,000 each to be subjected to an experimental treatment advertised on the internet and administered in Darwin and Perth in 2004-05. All of them were told to abandon conventional medical treatment, including painkillers; all were seduced by a claimed 95 per cent success rate; all of them died, many in agony.

It began in April 2004, when Darwin couple Kathleen and Keith Preston flew into Thailand seeking the help of Dr Abdul-Haqq Sartori, who made miraculous claims online for his "high pH therapy" for cancer patients. Kathleen had been suffering breast and secondary cancers for seven years; Keith, a mechanic, was appalled by the effects of her chemotherapy and wanted to find an alternative cure. Sartori advocated the intravenous administration of caesium chloride and the industrial solvent DMSO, along with doses of mineral supplements and ozone, and coffee enemas for detoxification.

Sartori was a medical doctor, but one with an appalling history. Born Hellfried Sartori, in Austria, he had changed his name after arriving in Thailand in 2003 from the US, where he had been deregistered in two states, jailed in New York for practising without a licence, and jailed again in Virginia after two patients suffered life-threatening reactions to his treatment. Over 11 days in a hotel room in Chiang Mai, Sartori administered his treatment to Kathleen Preston for a payment of $16,000. On the final day she was rushed to hospital with heart arrhythmia and died when her jugular vein was punctured during surgery.

Despite this tragedy, Keith Preston returned to Darwin convinced that Sartori's methods had shrunk his wife's tumour, and set up a clinic in his wife's name on his property. He recruited a nurse he knew, Simone Phasey, and Sartori flew into Darwin to oversee the clinic. From September 2004 to March 2005, 11 people paid up to $30,000 each for Sartori's intravenous formulations. According to medical records later presented to the WA coronial inquest, many of them suffered fainting spells and collapsed, several were hospitalised and all subsequently died.

By the time it was over, Sartori had returned to Thailand and Northern Territory police were investigating. But Keith Preston remained convinced that the treatment was beneficial, and so did one patient, Genevieve Bond, who'd come to Darwin from Perth suffering breast cancer. Bond's tumour had broken through the skin on her breast, and she was amazed during her treatment when the tumour appeared to fall off after DMSO solvent was applied. After returning to Perth she told her GP, Dr Alexandra Boyd, who had a longstanding interest in complementary therapies. Tests would soon show that Bond's tumour was in fact still present, and she died of cancer less than three years later. But in May 2005, Boyd agreed to let Keith Preston set up a second Kathleen Preston Memorial Health Centre at her home in Perth, and to provide medical assistance. Within days, seven terminal cancer patients were undergoing Sartori's treatment in her home. Deborah Gruber was a 42-year-old New Yorker with breast cancer who had found out about the clinic online; Pia Bosso was a 68-year-old from Glenorie, NSW, suffering cancer of the lungs and thyroid; Sandra McCarty, 53, from country Victoria, had breast cancer; Sandra Kokalis was a Perth mother with metastasising cancer throughout her body; Tony Ranieri had Stage 5 lymphoma; Carmelo Vinciullo, 29, had a cancerous mass in his pelvic bone and lungs that was so large it was splaying his ribs; Daryl Green was a South Australian who had prostate cancer.

Inside Boyd's home they sat in armchairs as Simone Phasey and another nurse, Merrilee Baker, supervised drips, feeding tubes and coffee enemas, following Sartori's directions via phone and Skype from Thailand. All seven patients had been instructed to stop taking pain medication. The treatment was meant to last 11 days, but things soon went awry. Sandra Kokalis suffered a seizure and was briefly hospitalised; Carmelo Vinciullo endured five days of agony before abandoning the treatment. Pia Bosso's niece, Sandra Hoffman, was horrified when she turned up at Boyd's home. "The smells, the sounds, the conditions - just horrible," Hoffman told the inquest. "People were in pain, they were throwing up, they were sick, and probably scared too. Very, very scared in what was going on with their bodies." Sandra McCarty's daughter, Natallie Squire, was equally distraught as she watched her mother groaning with pain, her legs and abdomen ballooning from retained fluid. But Squire, as she later admitted to the inquest, had by then been convinced that her mother's agonies were part of the healing and detoxifying process.

On the 11th day of her treatment, Sandra McCarty suffered massive bleeding and was taken to Fremantle Hospital, where nurses were perplexed when her daughter tried to prevent them from administering morphine. "I know it's crazy," Squire later testified, "but I said while she was laying there, 'You can't give her morphine'. I said that to the nurses and I've got to live with that." Sandra McCarty died the next morning, and over the next three days Pia Bosso, Deborah Gruber and Sandra Kokalis were all rushed to hospital in acute distress. By May 28 all three had died, too. The three male patients survived the treatment, but not their illnesses.

In November 2010, Sartori flew into Australia to testify in the inquest. In his rambling and contradictory evidence, the then 72-year-old insisted that the deaths of the four women had been caused by inappropriate hospital care, not his treatment. Medical doctors, he claimed, had deliberately sabotaged his patients' conditions in order to blacken his reputation; in a later interview with 60 Minutes, he admitted he could not produce a single successful case history but insisted that his techniques had been proven in the medical "underground".

WA's deputy coroner Evelyn Vicker expressed bafflement in her report that trained personnel such as Boyd and the two nurses could have participated in the treatment, which she likened to a medical experiment. Her report concluded that it hastened the deaths of the four women, and she recommended that the Director of Public Prosecutions consider criminal charges. But charges may never eventuate, given the difficulties of proving that these terminally ill people were killed by their treatment rather than their disease. And even though Sartori still lists himself on LinkedIn as a "professor of alternative medicine", his whereabouts is unknown.

In the online world of alternative healing, Paul Reid's story pops up often. The 70-year-old retired Melbourne architect was diagnosed with non-Hodgkin lymphoma in 1997 and told that the average survival rate is four to seven years. But Reid, who has never had any medical treatment, is still alive after adopting a strict vegetarian diet and eating ground apricot kernels every day. His wife Cheryl, who researched and helped devise his health regimen, gave up her job as a primary school teacher to write a book and launch a website outlining their beliefs about natural healing. Reid has become known in the media as "the man who cured his cancer with apricot kernels".

Yet as the Reids themselves acknowledge, it's not that simple. Devout Christians, they have little truck with New Age "mumbo-jumbo". Paul Reid believes his diet and the apricot kernels - which contain a substance called amygdalin - have prolonged his life; he believes his faith in a protective God has shielded him from stress; beyond that, he is not sure he can explain his survival. "I wish I could tease it out," he says. "I've been open to everything that makes sense to me. As a Christian, I believe in the supernatural, I believe in guidance, and I'm bowled over by this journey I am on." He says he would refuse chemotherapy even if he were facing imminent death; he thinks drug companies have a pernicious influence in promoting lucrative treatments which have little value.

A small lump appeared on Reid's neck earlier this year and he went to see his oncologist, Associate Professor Ian Haines. A biopsy confirmed that the cancer was still present, but of the original low-grade type. Haines considers Reid a remarkable man, and in fact agrees with some of his views on drug companies. The oncologist has written articles arguing that companies fund research that exaggerates the effectiveness of drugs and leads to over-treatment. He freely admits that chemotherapy actually helps only a tiny minority of patients overall: a 2004 study by three Australian cancer specialists found that chemotherapy contributed only 2.3 per cent to the five-year survival of patients, with surgery and radiation making up the remaining 97.7 per cent.

That statistic is misleading, because chemotherapy is sometimes used for palliative care, and because some cancers simply don't respond well to drugs: the study found chemotherapy had no discernible impact on malignant melanoma or cancers of the prostate, uterus, bladder and kidney, whereas a third or more of people with testicular cancer and Hodgkin lymphoma did benefit. But Haines doesn't doubt that 2.3 per cent figure, and believes oncologists need to be honest with patients about the treatments they offer. "There is no doubt that in 20 years people will look back on this as a bizarre phase in medicine, where we had to treat so many people to benefit so few," he says.

Paul Reid's disease, he says, is a good example of a cancer that is over-treated. In its low-grade form it is an "indolent cancer" that can circulate in a person's system for 20 years or more without needing intervention. So Haines takes a sceptical view of all those apricot kernels Reid has been eating, while acknowledging that prayer and diet may well have contributed to his survival. "What Paul has done has not caused him any harm; it's helped him cope with his illness, it's given him hope and maybe it has helped," he says. "Humans need hope."

Last year Haines caused a furore in alternative health circles when he co-authored a scientific paper with Tasmanian oncologist Professor Ray Lowenthal which theorised that Ian Gawler, Australia's most famous cancer survivor, may not have experienced a miraculous remission in 1978. Haines and Lowenthal had become aware that Gawler was suffering tuberculosis as well as cancer - something Gawler did not mention in his best-selling book You Can Conquer Cancer - and that his secondary cancer diagnosis had never been confirmed by biopsy. They theorised that Gawler's "secondary cancers" were in fact calcifications caused by the tuberculosis, which was cured by antibiotics.

Gawler has rejected the paper as "sloppy and mischievous". He says there is "definitive evidence" that his tuberculosis developed after his secondary cancer, and points out that in 2004 his left lung was removed and found to contain a bony mass consistent with cancer after chemotherapy. But his ex-wife Grace Gawler has now embraced the Haines/Lowenthal hypothesis, saying it clarifies many doubts she had about his recovery. "The Ian Gawler story was at the vanguard of today's alternative medicine movement - he was the living 'proof' that many were searching for," she says. "People read these stories and they really want to believe in a miracle." These days, much of her naturopathic work involves urging cancer sufferers back to proper medical care and away from natural treatments which she believes are an escalating cause of death and suffering. "I've been trying to convince a lady for the last eight months to see a surgeon and have her breast removed," she says. "Her tumour is the size of a basketball and she's in dreadful pain. But the last exchange I had with her she said, 'I've come across A Course In Miracles'."

Professor Alex Crandon, director of the Queensland Centre for Gynaecological Cancer, also sees growing numbers of patients opting for dubious therapies - the day he spoke to The Weekend Australian Magazine he had just learned that a patient with treatable cancer was declining chemotherapy and consulting an Indian faith-healer. Crandon says that whatever the limitations of conventional treatment might be, the outcomes for his centre are at least carefully recorded and reviewed: he knows that five-year life expectancy for ovarian cancer patients has jumped from one-in-four women to more than one-in-three since the 1980s. Patients with one uncommon type of ovarian cancer now experience 90 per cent remission at five years; in the 1970s nearly all would have been dead within 18 months.

"The patients I have had who have gone to alternative practitioners and stayed with them, the one thing I can say is that they have a very, very consistent outcome," Crandon says. "They are all dead."

There is scant evidence in medical literature to support the use of caesium chloride, ozone, laetrile and many other popular alternative therapies. The US National Cancer Institute has consistently stated since 1947 that it can find no evidence for the effectiveness of Gerson therapy, which has never been subject to a controlled trial and is illegal in the US. Double-blind studies of alternative treatments have not been promising: shark cartilage was shown to be largely worthless, while megadoses of Vitamin C appear to be detrimental. Professor Ian Olver, head of Cancer Council Australia, says he is baffled by the popularity of coffee enemas: in his book You Can Conquer Cancer, Ian Gawler extolled them as both a painkiller and a way of stimulating bile flow in the liver, but Olver says he regards this as "pseudoscience".

Olver refutes the argument that chemotherapy is largely ineffective: newer drugs are improving outcomes, he says, and chemotherapy in conjunction with surgery or radiotherapy has been highly successful against breast and bowel cancers. But like a growing number of cancer specialists he acknowledges that patients need to feel a sense of control over their own fate, and that meditation and other natural therapies may improve outcomes. Olver recently edited a book-length review of complementary medicine in which, among other things, he conducted a randomised double-blind study on the power of prayer (it appears to work). The late brain surgeon Chris O'Brien, who embraced meditation and herbal remedies after he was diagnosed with a brain tumour, has left as his legacy a holistic cancer centre, The Chris O'Brien Lifehouse, at Royal Prince Alfred Hospital in Sydney.

Petrea King, whose own story of remission after meditation defies medical explanation, is optimistic that a middle ground is emerging between the quack healers of the internet and the rigid attitudes of old-school oncology; she is on The Chris O'Brien Lifehouse steering committee, and is advising another hospital in Melbourne on complementary healing. She notes sardonically that cancer specialists who get cancer have proved to be keen adopters of alternative healing. "There is a huge movement to integrate these ideas into treatment - a lot of hospitals are moving to a holistic oncology model," she says. "When I started out the idea that meditation and diet played a crucial role in recovery was considered very fringe; cancer was some sort of mystery that descended on you and you didn't have any part to play in how it was dealt with. For me what's exciting is that hospitals are now embracing these ideas in the medical system."

Jessica Ainscough's website features a video of her interviewing Ian Gawler, who she credits as a major inspiration. She's aware that Gawler's story is now being questioned, but says it has not shaken her belief in him for a second. "His message is getting out there and I think it's threatening the medical community," she says. "I think they are trying to discredit him."

Two years since she abandoned conventional medicine, Ainscough says she feels healthy and remains positive. She suffered nerve damage to her arm from the chemotherapy, and gets swelling from the removal of lymph nodes, but doctors at the Gerson clinic in Mexico tell her that the blood samples she has been sending them indicate no change to her cancer condition. An oncologist would point out that her particular cancer is slow-growing, with studies suggesting that nearly half of patients are still alive after 10 years - a point some internet commentators have made stridently ("Jessica Ainscough will die," runs the headline on one website). Ainscough remains adamant, however, that she will stick to her path. "This is not a quick fix," she says, "it's a complete lifetime commitment. You have to believe in it 100 per cent."

THE DEATH OF ATHENA STARWOMAN
In the New Age firmament, few shone more brightly than Athena Starwoman, the Australian spiritualist who built a global business as an astrologer and author. When she died of breast cancer in 2004, at 59, her fans were shocked, for she had given no hint of her illness. Earlier this year her closest friend, Deborah Gray, revealed that Starwoman in fact died after rejecting medical treatment in favour of "mind-body" healing, a decision she profoundly regretted at the end of her life.

Gray says she tried and failed to dissuade her friend from taking the non-medical path. After seven months of using herbal remedies, meditation and other alternative techniques, Starwoman was suffering such unbearable pain that she had to admit herself to hospital, and her condition was by then untreatable.

"Athena was very logical, she was very practical, she was not a hippy-dippy dropout," Gray tells The Weekend Australian Magazine. "But I think what happened to her is what happens to a lot of people who get diagnosed with cancer: she went into shock. And rather than face up to what can be a very long and arduous treatment which can make you feel very sick and is very frightening, she lost her sense of what to do. She didn't regret her beliefs, because she used her metaphysical training to face the end in an amazing way. The regret she had was that she didn't try everything, including standard medicine. She knew that was a mistake."

Gray believes a creeping fundamentalism has taken over New Age precepts. She is particularly critical of the "law of attraction" philosophy which says illness and healing are purely manifestations of the mind. Starwoman's husband, US self-help guru John Demartini, is a leading proponent of this philosophy, arguing that cancer is often triggered by negative thoughts and that "the internal healing powers of the body" are the most significant factor in healing. Demartini has likened his wife's death to voluntary "euthanasia", suggesting she had always wanted to die while she was still beautiful and was "ready to move on". Asked about this, Gray replies: "I disagree 100 per cent. I was there. He wasn't."