Cancer sufferers gamble long odds
Leslie Papp
Susan Mitchell says she has succeeded where the world's most brilliant scientists have failed - she has beaten breast cancer without surgery, chemotherapy or radiation.

"I don't have cancer in me any more," smiles the slender 56-year-old, crisply enunciating every word. For decades she's been the voice behind announcements on TVOntario, so almost everyone in the province has heard her rich timbre.

"I know the malignancy is gone."

Mitchell credits that to alternative medicine - everything from $300 magnets to Chinese herbs - and to a religious conversion to Falun Dafa that completed her cure.

As she speaks she passes a hand over her flowing, white blouse. Through the cotton shirt she finds a tennis-ball-sized tumour and frames it with a thumb and forefinger.

"I still have a lump but, eventually, it will go," she says. "As far as the medical profession is concerned, I still have cancer. But - within my being - I know I don't."

Unlike most Canadians who use alternative therapies and also rely on modern medicine, Mitchell is among a minority shunning standard cancer care. Doctors worry more will be seduced into abandoning scientifically proven life-savers as society's faith in alternative cures grows.

"An increasing number of parents are refusing to immunize their children because of information from an herbalist or chiropractor," says Dr. Lloyd Oppel, an emergency medicine specialist at University of British Columbia Hospital in Vancouver.

"That's an unncessary risk," he says, adding it triggered a measles epidemic in B.C.'s Lower Mainland a few years ago. "The vast majority (of people stricken) hadn't been immunized."

Others arrive in emergency wards with bad reactions to herbal medicine. But people with cancer refusing mainstream care remain the most tragic, Oppel says.

"I come across them at the end - when things have really gone downhill."

And then it's too late, Oppel sighs.

He describes one case gouged into his memory - a woman with breast cancer who went to a Mexican clinic rather than face standard therapy. It failed. Cancer spread. She fell into a coma on the emergency room's threshold, dying a short while later.

Tyrell Dueck made headlines when he refused amputation of his leg (and probable survival) in favour of cyanide-producing Laetrile and fruit juice at a Tijuana clinic. The 13-year-old died of bone cancer last June. But many more cases never make the news.

A few months before Tyrell died, Calgary doctors described the death of a 9-year-old girl with a brain tumour. She had surgery, and specialists urged follow-up radiation and chemotherapy, known to produce a survival rate of over 50 per cent. Her parents refused and treated their daughter with shark cartilage. She died within months.

Coroners track suicide and "death by misadventure" but no one tallies lives lost due to blind trust in alternative cures. "We don't have a code for that in our present computer system," says Ontario deputy chief coroner Dr. James Cairns.

While many people with cancer dabble in unorthodox therapies, it's estimated that perhaps 5 per cent - or about 6,000 of last year's new cases in Canada - rely mainly on unconventional care.

For most, their decision is a life-or-death gamble - staking all on long-shot treatments with no proven value but which still inspire more faith than hard words from scientists and cancer specialists.

"They basically think I'm crazy," says Mitchell, adding that she never once considered surgery, chemotherapy or radiation when breast cancer was diagnosed in 1997.

"It wasn't a hard decision. I don't care what the doctors say."

She embarked on a personal quest for a cure, sampling almost every alternative approach imaginable.

A macrobiotic diet of miso, sauerkraut, and brown rice dropped her weight to 93 pounds. (She quit that and is now back to a healthier 120.) She fasted, swallowing only chlorophyll and distilled water; she tried cleansing her liver by drinking only olive oil and grapefruit juice (resulting in epic diarrhea), and she used a "parasite zapper" that she built herself with a five-volt battery, some wire, two short lengths of copper pipe, and an olive-green Bruno Magli shoebox.

"Cancer produces so many different viruses and bacteria, I was using it pretty well every day for quite a few weeks," Mitchell says.

She borrowed $300 from her mother to buy a pad, studded with hundreds of tiny magnets, for her mattress. She had been assured this produced "tremendous success in eliminating breast tumours in one or two weeks."

Scattered throughout her downtown Toronto apartment are a mug with a magnetic bottom, a hairbrush with a built-in magnet ("It stimulates your scalp"), magnets on her shower-head, on the kitchen tap, and even a magnet dangling from the spout of a watering can for her houseplants ("They energize your water.")

Mitchell was spending $200 a month on vitamin supplements alone and taking more than 50 pills a day, including Chinese herbal remedies. In one month she spent more than $1,000. "I was taking megadoses." And there were up to three coffee enemas a week.

No one therapy resulted in a cure, but each had something to add, she says. "If your goal is a dollar, each therapy is like a few cents. Even a magnet on your hairbrush can contribute a penny."

Last January, she read a book by Li Hongzhi, founder of the spiritual movement Falun Dafa, and was energized. A revelation dawned: The lump in her breast was no longer cancerous. It had become benign.

"I take nothing now," Mitchell says. "No vitamins, no minerals, no Chinese herbal pills. And I feel better than I did in the past 30 years."

She has given away her $300 magnetic pad. And she scorns cancer experts for offering nothing but "negativity, suspicion, and lack of training" in alternative care.

Cancer specialists are in a bind. Patients like Mitchell feel betrayed if a doctor denounces their unorthodox attempts at a cure. But if physicians fail to speak against unproven therapies, they risk silently accepting dubious methods.

"It's a frightful dilemma," says cancer specialist Dr. Malcolm Brigden. And it requires diplomacy that some specialists lack.

Brigden says he sometimes endorses taking vitamins B and C for cancer, even though there's little evidence these actually help. At least they're cheap and non-toxic. "That's often a good way to show people you're not narrow-minded. You have to listen."

In the tug-of-war between cancer specialists and alternative practitioners for the hearts, minds, and bodies of patients, unconventional therapies exert a powerful draw.

Despite billions spent on studying cancer, standard care still involves cutting patients, blasting them with radiation, or running toxic chemotherapy drugs into their veins. "We have to tell people that up front," says Brigden, in Penticton, B.C. "You're going to have all these side effects."

By contrast, most alternative cancer treatments claim non-toxic, "natural" methods, and make glowing promises of a cure. "That's very appealing to people." And unorthodox treatments come in an almost endless variety.

"There's always something more," says naturopath Jim Chan, sweeping his arm with theatrical flourish toward storage racks packed with medicine bottles, jars and boxes. (Naturopaths aren't MDs but rather alternative medicine general practitioners, offering a wide variety of treatments.)

Chan points out mushroom extracts, shark cartilage, homeopathic medicine, Laetrile, mistletoe and something processed from fish sperm. "All kinds of strange stuff," he says.

Boxes of Essiac, yet another herbal treatment, are stacked in a hallway. He rushes past them offering a whirlwind tour of his Vancouver facility, opening one locked door after another to showcase the clinic's high-tech gear: ultrasound equipment, an x-ray machine, two hyperbaric oxygen chambers (for cerebral palsy), an electrocardiogram machine, and a special camera imported from China, cooled to minus 40C to reveal heat patterns in the body. (Cancer cells are supposed to be hotter than normal.)

"It's not cheap, that's why we lock every door," Chan boasts.

His receptionist sits in front of a wall of patient files, stored on edge for easy reference. Those involving cancer carry a red tab, and the shelves are ribboned almost entirely in red.

His practice differs from Tijuana clinics in that "we don't use pesos," Chan quips.

"Our billing practices are a bit more ethical. We don't bill as much," he adds, noting that there are no block fees charged just to walk in the door. "And we don't give any promises."

Treatments vary, and so do costs, Chan says. "A really bad case can easily run up to $2,000 to $3,000 a month."

Unlike some practitioners, he strongly urges cancer patients to continue mainstream care. But, like most, he describes his results as "phenomenal."

He concedes there's no scientific evidence showing his approach works. A study would be difficult since each person's treatment is unique, even those with identical cancers. Who gets what therapy comes down to "an educated guess," Chan says. He crafts a personalized treatment plan after taking an extensive history of a patient.

That personal attention is a great strength of alternative practitioners. They'll often spend an hour or more with someone on a first visit. How many oncologists have that much time?

"Nobody I know," says Richard Doll, at the British Columbia Cancer Agency.

"In our society, we put a lot of weight on personal bonds," he declares, with a hand over his heart. "But if you have 15 minutes for a consultation, a lot of technical material to cover, and 20 patients to see, it's impossible to build a relationship."

That's not good enough for many of today's cancer patients. They demand more than abrupt directives from some authority figure, Doll says.

"Twenty years ago we were more complacent. But a different kind of patient is getting cancer now - the baby boomers. They're more affluent, more educated and have a strong belief in their own abilities."

Patients increasingly see their cancer specialist as just another player on a team that also includes a variety of alternative caregivers.

"Hey, it's my life," says a Unionville woman with breast cancer spreading in her bones. Her oncologist "is part of my panel of experts - just one among the people I trust who help me put together my plan.

"There's also my naturopath; my general practitioner; my zen therapist; my support group of wise women, who have been there and done it; and my family."

Finding a treatment for Jackie Scanes, 66, of Burlington, became a family affair when she was diagnosed with lymphatic cancer in 1995.

Her four daughters called clinics across the country, combed through the University of Toronto medical library, and worked the Internet. Other relatives also did research.

"In the end, nine of us sat around a table. We had all done our homework and we asked everyone to write down the form of therapy they thought was best," Scanes says.

Without exception, the entire clan wrote: Gerson therapy. "And that's the one I chose. It's an all-natural program."

Developed in the 1930s by Dr. Max Gerson, a German immigrant to the United States, this method involves coffee enemas, liver-boosting injections and eating raw food, especially juices.

Despite calls from her doctor warning of quackery, and cautioning that she could die in six months without chemo, Scanes went to a Mexican clinic for three weeks to receive Gerson treatment and learn how to administer it at home. That cost about $20,000.

Sticking to the program was exhausting. For more than a year her life revolved around juicing, injections of a liver extract sent from Mexico, injections of vitamin B12, and four or five coffee enemas daily to cleanse the body.

"It's so intense you forget there's a life out there," Scanes says. "I was turning orange from all the carrots."

But it was worth it, she says. Four years after her diagnosis, she looks remarkably fit and has eased up on the Gerson program.

As she speaks, Scanes absent-mindedly presses the left side of her abdomen. That's where her tumour is, deep within. She can't feel it by pressing here. Never could. She gently presses the area anyway.

An oncologist has told her that, with this type of cancer, life expectancy can range "anywhere from no time to seven years," Scanes says, even with chemo. But, like Mitchell, she has concluded the malignancy is gone.

"In my heart of hearts, I don't believe my cancer is active," she says. "The mass stays, but I think the cancer itself dies."

Patients unable to stick to the strict Gerson diet can choose from megadoses of vitamin C; the Hoxsey herbal method; mistletoe extract sold as Iscador; Laetrile; rice-based enzyme therapy; psychic surgery; shark cartilage; and 100 others taken alone or in combination. They all claim to fight cancer, but there's no solid scientific evidence that any offer a real cure.

Luigi Di Bella's celebrated cocktail of vitamins, hormones and drugs is the latest unorthodox treatment to suffer discredit.

The 86-year-old physiology professor was mobbed at Pearson International Airport in June, 1998, by cancer patients and their families seeking a chance at life. His claim to have cured more than 10,000 people triggered near-hysteria in Italy, where thousands took to the streets to demand government-funded access to Di Bella's multi-therapy.

Those hopes now have gone limp. A series of published reports show that Di Bella's method doesn't work and is potentially harmful. Italian scientists report that, of 314 people receiving Di Bella's cocktail, fewer than 1 per cent showed even a partial response to the treatment. And those given this alleged cure lived only half as long as patients receiving mainstream care.

Di Bella insists that for the cocktail to work, he must tailor it to the precise needs of each patient, so scientists' efforts don't count.

People with cancer listen because they're desperate to believe, says Brigden, the Penticton oncologist who sometimes endorses vitamin therapy. For many, hope is all they have. And it doesn't take much to convince them a cure is at hand.

Some cancers take a long time to run their course, and slow-growing tumours often produce few symptoms, misleading patients into thinking an unorthodox therapy has cured them, Brigden says. "Some tumours even stop growing for periods of time, for reasons we don't understand. And there are rare spontaneous remissions."

Most cancer patients rely on standard care while trying alternative approaches. And if they do well, they tend to credit the unconventional methods they searched for themselves.

Others, assured by alternative gurus that they've been cured of cancer, never had the disease in the first place. (Some of Di Bella's success stories appear to be in this category.)

Rather than hard science, evidence marshalled by backers of unorthodox cures consists of testimonials from patients who see themselves as doing well. "The ones who had bad experiences aren't there to testify - they're dead," Brigden says.

Despite the evidence gap, some patients place so much faith in "natural" remedies, and so little trust in modern medicine, that even alternative practitioners are troubled about their welfare.

"I'm worried - I really am," said Paul Saunders, associate dean of medical affairs at The Canadian College of Naturopathic Medicine, in Toronto.

One of his patients is a young woman with Hodgkin's disease - a form of cancer that's readily cured with radiation and chemotherapy. "But she wants to go the natural route," Saunders said.

After four years on a regimen that included vitamins and juicing, the woman's lymph nodes began swelling. "That's what I don't like," he said, adding he'd like her to see a medical doctor. "You hate to see someone get very sick. But she's a determined person."

In response to her worsening condition, his patient is now on 714-X, an unproven camphor-based therapy developed in Quebec.

Deputy coroner Cairns recalls the case of another young woman with curable cancer who died about two years ago.

"She was of sound mind and decided, no, she didn't want her hair falling out (from chemotherapy), and so on. She was going to have herbal therapy instead. None of which worked."

The woman died emaciated, "down to nothing," with sores all over her body, Cairns says. "We're pretty tough people. I do autopsies every day. But that seemed especially sad - a young life gone because good therapy wasn't considered.

"But that was her decision."

The coroner's office investigates whenever someone dies of disease outside the care of a physician. And there are usually one or two such cases a year, Cairns says. But that's no indication of how many are killed by their trust in alternative care.

In the end, these patients are almost always brought to a hospital, so their death certificate is signed by a doctor and the coroner's office doesn't get involved, he says. "I'm sure there are many that we're not seeing."

Not much can be done as long as there's no obvious exploitation of patients. "It's buyer beware," Cairns says. "It comes down to choice - free will."

But a choice based on false assumptions isn't free at all, says Oppel, the B.C. emergency room doctor.

"Freedom of choice is only meaningful if you possess relevant information - if you know whether or not your therapy is effective," he says.

"People aren't empowered if all they're getting is promotional information. The tragedy is that people believe - until it's really too late."

Next weekend The Star looks at efforts to tame Canada's fast-growing alternative medicine industry, and its practitioners, with new regulations.

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