More 'miracle cure' cancer survivors make disturbing claims.

When Kristine Matheson was told, back in 2005, that she had stage IV melanoma cancer with an inoperable tumour dangerously close to her aorta, her first thought was to ask her doctor for a refund and a referral.

But it was this unwillingness to accept defeat, when told her only option was to get her “affairs in order”, that led the self-described health and “wellness blogger” and “cancer to wellness coach” to device her own set of protocols for fighting her disease.

Fast-forward ten years and Matheson claims she is cancer free (Debrief Daily has not viewed the medical records of anyone interviewed for this story), something she attributes to her own diet and lifestyle based program.
“I believe that there is a cure for cancer and it is in nutrition,” Matheson, 64, explains.

“My true healing process started when I put my own program together so I was walking in my wellness not in my sickness. Every time I went to the doctor’s office I was sick, so I decided to keep all the doctors away from me and I just did my program and that is why I am here today,” the Gold Coast resident insists.

In 2009 Matheson wrote a book about her experience replete with a 28-day, detailed guide on how to replicate her success. Self-published in Australia and available on her website for $49.95 and published in the US by Balboa Press (from whom she receives $1-1.50 per book sold), Matheson estimates that From Cancer To Wellness: The Forgotten Secrets has sold in excess of 20,000 copies in Australia alone. If these figures are in fact true, that means Matheson has earned revenue of more than $100,000 from her book.

Matheson says she has coached thousands of cancer sufferers in the past ten years initially through one-on-one appointments in her home and now simply over the phone or on email. Together with her husband Wayne, a personal trainer and student of naturopathy and musculoskeletal therapy, she also runs seminars and retreats. Matheson claims the retreats merely cover costs and she does not charge her mentees for appointments or calls.

Worringly, she insists that although she isn’t qualified she nonetheless feels totally comfortable giving people medical advise about their cancers.

Watch Matheson talking about her treatment here:

“Of course I do, because I know it works. If I thought I was hurting anybody I would never do it. I don’t do this for profit. If I did it for profit you could look sideways at me,” she says.

Even more disturbingly, Matheson does not conduct any form of structured follow-up with her mentees. She only keeps abreast of their condition if they contact her. She says of the thousands she has coached she knows personally, of hundreds that have beaten their cancer. She is unable to offer any form of proof to substantiate these astonishing claims.

Matheson does not have the kind of social media following that the likes of Belle Gibson (The Whole Pantry blogger, author and business woman who is thought to have completely fabricated her cancer claims and has since been dropped by her publisher and business associates) and Jess Ainscough (The Wellness Worrier whose influential blog, books and seminars about 'curing' her cancer with alternate treatments including the nutrition-based Gerson therapy died from her cancer earlier this year) commanded.  She has been told by US publisher Hay House, who she says are interested in publishing her book, that she needs to increase her social media presence to raise her profile on Google if she is to find success in the US market. So Matheson has become more prolific online, recently sharing blog posts such as “fifteen reasons some holistic cancer therapies fail” and “personal changes to treat cancer” on Twitter.

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In this she is not alone. The Internet and social media have given rise to a new phenomenon, that of the wellness instablogger celebrity and pseudo expert. From cancer to autoimmune diseases, infertility to exercise and diet they offer advice to their followers, which can number in the 100s of thousands. They have influence.

Laura Bond is another example. Her mother Gemma was diagnosed with ovarian and uterine cancer in 2011 and rejected medical treatment following a hysterectomy. In her blog Mum’s Not Having Chemo, Laura chronicled her mum’s alternative treatment path, which included coffee enemas, ozone therapy and vitamin supplements. [note: Debrief Daily has not viewed any medical records to substantiate these claims].

The popular blog has since been published into a book. Since completing a year-long, online course with the Institute of Integrative Nutrition (IIN) in New York, the go-to course for many of the online wellness experts, Laura now works as a health coach, charging her London based clients AU$120 an hour per session and runs a series of wellness events and seminars in London and around Europe.

While a cancer patient’s right to choose their own treatment path remains undisputed, all of this begs the question, is it appropriate for non-medical professionals to draw from personal and anecdotal evidence when publishing about and proselytising in a public forum on alternative treatments for life threatening diseases?

The dangers of DIY, alternative therapies, 'celebrity' experts and 'miracle' cures

An integrative medicine practitioner, Professor Kerryn Phelps says most patients diagnosed with cancer look to complementary therapies to help them cope with their treatment and recovery to the extent that her book about cancer recovery and how to “safely integrate” therapies, is being published in May.

A medical director at Sydney Integrative Medicine and Cooper Street Clinic and a former president of the federal Australian Medical Association (AMA), Professor Phelps cautions patients to tread carefully when researching treatment options on the Internet and social media.

“Consumers have a right to accurate information and I think where people are self proclaimed experts there is a great danger in that they don’t have the appropriate training, they don’t have the experience and the breadth of vision about what is going on for people with serious health issues,” she says.

Issues of accountability arise when alternative health practitioners who are not registered health professionals are not required to adhere to professional standards.

“When it comes to health care the stakes are high. That is why we have regulatory bodies and regulation of professions,” she explains.

Professor Phelps cautions consumers to “beware” and to discuss information they have researched or information they have gleaned from others with their doctor, preferably one with integrative medical experience.

“A lot of people are doing it themselves without professional guidance and I think there is a lot that can be gained, but there are also a lot of pitfalls,” she says.

“The main pitfalls are that people are making it up as they go along. People have access to the internet and a whole range of different types of information sources, not all of which are credible or accurate”.

So much so that Victoria’s state president of the AMA Dr Tony Bartone recently called for more stringent scrutiny of celebrities and health and wellness advocates spruiking alternative therapies following the death last month of 29-year-old Jess Ainscough, a cancer sufferer and advocate for the controversial alternative cancer treatment known as Gerson Therapy. The comments also followed a Federal Health Department investigation into recipes in Bubba Yum Yum: The Paleo Way, a cook book co-authored by celebrity chef Pete Evans that included a recipe for baby formula made from liver and bone broth. Publisher Pan Macmillan has since dropped the title.

Bartone said he feared these “celebrities” were going beyond their training in endorsing various treatments and diets.

Some argue that the media, in championing death-defying cancer survival stories, such as the case of Paul Reid who was diagnosed with non-Hodgkin lymphoma in 1997, has had no medical treatment and remains alive after adopting a strict vegan diet and eating 30 apricot kernels daily, has a part to play in shaping public perception.

Before her spectacular fall from grace Belle Gibson became a media darling making regular appearances on breakfast television and receiving awards for her work in social media from women’s magazines. In 2012 Jess Ainscough appeared with her mother on the front cover of one of our national weekend supplements, complete with a styled cover shot.

Katrina Matheson has been profiled in print media on radio and has appeared on many news-style television programs.

So, who are these people following non-medical advice?

In Professor Phelps’ clinical experience people who opt for alternative treatments are often those that have been told that in the realm of medical science all options have been exhausted.

However even in these situations she cautions people are still in danger of spending time and money on things that might not help them.

“They will also need professional guidance to steer them away from things that are likely to be ineffective or unsafe,” she says.

Head of the cancer research program at Monash University’s School of Public Health and Preventative Medicine Professor John Zalcberg explains that most medical oncologists or cancer specialists have seen patients that have come to harm because they have declined conventional, “evidence based approaches”.

“I have seen young people with diseases for which there are treatments that would cure them and for which they have not taken those treatments and they have died because of an unreal belief in some alternative approach,” he says.

Patty James* understands all too well the blind hope that pervades when one is faced with their mortality or the death of a loved one.

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Her mother Lisa* passed away in 2012 just four months after being diagnosed with pancreatic cancer. She was offered chemotherapy, but was told it might only prolong her life for a further six months.

Lisa declined chemotherapy and chose to spend two months in San Diego at PH Miracle center, an alternative cancer treatment centre operated by Doctor Robert Young. Last year Young was arrested for practicing medicine without a license. She then spent the remainder of her life in Tel Aviv, Israel, where she undertook some treatment at the New Hope Cancer Center, which is run by Doctor Joseph Brenner, a medical oncologist who combines conventional, complementary and alternative cancer treatments.
While Patty knew intellectually that her mother was merely receiving day-to-day physical relief from pain and discomfort she says she still had “hope”.

“I had hope all along … you always think there is a chance,” she says.

“The mind is a complicated organ that can know on the one hand how dire it all is, but also know there are miracles. So you believe two things simultaneously”.

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Shelli Whitehurst speaks to cancer patients every day and finds many of them have been bombarded with information, usually from well-meaning friends and relatives who don’t have cancer, about alternative treatments and their effectiveness.

Last May Whitehurst, 39, was diagnosed with bilateral breast cancer with metastases to the brain. Her condition is rare, comprising a mere 4 per cent of the world’s breast cancers and the prognosis is grim. Typically those with her condition live no more than five years. With breast masses too large for surgery Whitehurst is on a cocktail of drugs that have kept her condition stable for nearly a year.

Immediately after she was diagnosed she says at least 12 people directed her to Jess Ainscough’s blog about Gerson Therapy.
Since her diagnosis Whitehurst, CEO of a boutique advertising agency in Melbourne, has become a member of four private, online breast cancer support groups. She is in daily contact with some 1500 women some of who have advanced breast cancer, for which there is currently no cure.

She “unofficially” mentors others who are newly diagnosed with breast cancer who she meets in the chat rooms of these private support groups.

Whitehurst estimates that at least 3 or 4 new people are added to these online support groups every day. New members must be verified before gaining entry. Discussions in the advanced breast cancer chat rooms are “raw” and “awful” and those with earlier stages of cancers are protected from the content on these sites.

“I started to see a lot of people online, especially early stage cancer patients, being so lost and confused. They go to Dr Google and they read that chemo can kill you and they read that this is good for you and they read that this is bad for you,” she says.
She likens these sick, scared, vulnerable people taking advice from those that aren’t qualified to dispense it to a “cult”.

“If people believe in something enough they think it could work … It comes out of a desperation to try to fix something that is completely devastating,” she says.

“When someone says they have cancer and then healed it from something, I want that too. I want it”.

The advanced breast cancer chat rooms are the darkest. Whitehurst has lost five of these chat room friends in the past month.

“All those girls would kill for a goji berry to cure their cancer. Or a protein smoothie,” she says.

Complimentary vs alternative treatment: what's the difference?

For Sally Harper* it all began with a few unusual looking bruises on her arms. The 72-year-old Melbournian, who runs a business in the CBD, mentioned the bruises and the fact that she was feeling lethargic, to her business partner’s husband, a notable neurologist and within days she was diagnosed with aplastic anaemia, a blood condition that falls within the cancer family. Within a month she was undergoing chemotherapy and was prescribed the immunosuppressive drug cyclosporine to help reduce her risk of brain haemorrhage.

That was 11 years ago. Harper has been living with cancer for more than a decade, during which time she has explored the gamut of complementary therapies from mind-body psychology to homeopathy, acupuncture, network chiropractic, kinesiology and naturopathy.

“I never rejected western traditional medicine,” she explains, “I have the utmost respect for the medical care I have received”.

Patients with aplastic anaemia are at great risk if exposed to infections such as colds and flus. Harper has managed to stay infection free and in good health - she works, does Pilates, travels and enjoys a healthy diet - something she attributes to the great many complementary therapies she has experimented with.

“A lot of people want the magic wand to be waved, but you’ve got to put the work in,” she says.

Professor Zalcberg is quick to point out the difference between complementary therapies, which complement scientific or conventional medicine and alternative therapies that by their definition are an alternative to conventional based medicine. He advises patients to seek “evidence based” treatments.

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Professor Zalcberg, who was head of cancer medicine at the Peter MacCallum Cancer Centre for 17 years and still consults as a medical oncologist, says that cancer centres globally are recognising the value of complementary therapies such as acupuncture, massage, music and diversion therapy and counselling to work alongside anti tumour therapies such as radiation, surgery, chemotherapy, immune and interventional therapies.

“We realise that treating a tumour is not treating a patient and treating a whole patient, whether you call that a holistic approach or however you describe it is all about treating the whole patient and their family,” he says.

“The difference between the complementary and alternative approaches are that people who promulgate a so called alternative approach see it as an alternative to these medicines and treatments … which we know shrink tumours”.

Professor Zalcberg says that because there are no known causes for many cancers in our community it is very common for patients driven by a desire to help themselves to discuss the role of complementary therapies.

“The implication is that something we are doing to ourselves is leading these cancers to occur whether it is dietary or some other factor in the environment,” he says.

He cautions patients to consult with their clinician before starting a complementary therapy because of the potential for that treatment to interact with the standard medical one and to exercise common sense when seeking expert advice. “The people giving advice around the management of pain should be pain experts and the people giving advice around the management of cancer should be cancer experts. If I go and see an accountant I expect the person to be an expert in the area of accountancy. I don’t go and see the plumber and say what do you think I should do with my tax”.

Taking an active role in her treatment has not been an easy process for Harper, both within the traditional medical and unconventional therapy settings.

Despite his amazement at her good health, Harper’s oncologist has remained “blinkered” when she raises the subject of complementary therapies claiming it to be “a lot of quackery”.

“He doesn’t concede that part of it is the drug and part of it is the complementary medicine, not for a minute,” she says.
By the same token Harper has seen an alternative therapist who, while racing from patient to patient ordering expensive tests and charging an outlandish fee for his service, raised alarm bells. “It is a terrible exploitation,” she says of therapists who charge hundreds of dollars for one appointment.

The move away from medicine and the rise of 'health coaches' and 'wellness bloggers'

Social researcher Dr Rebecca Huntley, one of Australia’s foremost commentators on social and consumer trends, explains that in the past ten years interest in alternative medicines and treatments – from particular diets to Chinese medicine - has been on the rise across all groups of Australians of all backgrounds.

“There are a couple of reasons why this is the case. One of them is a greater engagement with health and wellbeing, some frustration with conventional and traditional medicine, but also some of it is a search for … spirituality and meaning,” she explains.
Huntley’s research indicates that this spike in interest is a response to “modern complexity”.

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“We are enamoured with the natural, the spiritual, particularly if we feel like the alternative to that, all the machines and the medicines and the artificial stuff is actually not good for us”.

Couple our greater thirst for spirituality with the rise of new technology that has, on one hand empowered patients to ask questions of their doctors, but on the other hand enabled patients, in desperation and frustration, to grasp on to information that might not be credible, and we have an environment ripe for the emergence of charlatans.

One such astonishing case came to light last month with allegations that Melbourne’s Belle Gibson, 26, the creator of the bestselling app The Whole Pantry (TWP), is in fact, a fraud.

TWP is rooted in Gibson’s assertion that she has kept terminal brain cancer at bay for the past five years through the use of alternative therapies. It is now widely claimed that her cancer claim is false. The app, which was downloaded more than 300,000 times at a cost of $3.79 and was slated to be one of the only apps pre-loaded on the Apple Watch, has been pulled from the Australian and US App stores.

Despite this case and others like it around the globe, debate about individual freedoms and the need to protect people from self-harm persists.

Patty James believes in freedom of speech.

“It is a free society and we have social media and it is all up for grabs. You can espouse whatever you want to espouse. You can say that wearing red every day will make you feel fantastic and you can get a hundred million followers. I don’t think there is a problem with anyone saying try this it’s worked for me,” she says.

“Sure there are people who can be taken in and think that they might be cured in two weeks. There are all sorts of naiveties that people hold, but I don’t think there should be regulation against someone saying this worked for me this is how I did it.”
Shelli Whitehurst believes education is the answer.

“There needs to be stronger education in the process to make people truly understand what they are up against before they make their decisions,” she says.

Wellness: Finding the Yin and the Yang

It has become apparent that the optimal way forward is in achieving balance. Neale Svenson is a case in point. A Chinese medicine practitioner for the past 34 years, Svenson was rushed to hospital with an acute bowel blockage, the result of bowel cancer, in 2012 while living in Germany.

With the cancer also in his lymph glands, following emergency surgery Svenson, 56, was told he required chemotherapy. But, after decades of living by the principles he espoused to his clients he felt he was better placed to decide what his body could tolerate.

“I had lost 26 kilograms and I was in no state to accept anything else in my body that was going to challenge it,” he says.

Going against his oncologist’s advice Svenson sought treatment at the Clinic St George in Bad Aibling, an alternative therapy clinic run by Dr Dauwes. There he underwent hyperthermia, a cancer treatment that places the body under intense heat. This was combined with ozone and oxygen therapy, massage and reflexology and two low doses of chemotherapy administered over a 24-hour period.

Using Chinese medical terminology Svenson advocates finding a balance between yin and yang, east and west. He credits medical science with saving his life in the first instance, but believes the combination of conventional and complementary treatments cured him. He spent nearly three weeks at the clinic undergoing treatment, which he says was “very expensive”. He has been cancer free since his return to Melbourne last year.

“If it hadn’t been for the Western approach I wouldn’t still be sitting here. But not all of it because the Western approach is very black and white. It doesn’t have grey areas … we don’t have enough experience with people who can integrate other medicines,” he says.

Svenson is seeing more and more patients who are also battling cancer. They come with long lists of herbs, vitamins and minerals and confusion over what to take.

“A lot of the time they don’t need them in the way they have been given them,” he says.

The rise of health and wellness advocates, particularly those achieving notoriety on social media, concerns Svenson. He regularly researches new initiatives in Chinese medicine and acupuncture and often finds himself horrified by views other practitioners express in chat rooms.

“Anything stating that it is a cure for all things is going back to the dark ages,” he explains.

“I don’t make any claims of curing anything … as soon as you make a claim you are sticking your neck out for a chop”.

He believes our fast paced existence is preventing people from intuiting what their bodies need. Many of his clients come with wristbands that are attached to computer programs informing them of their sleep quality and when to have a drink of water.

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Svenson recommends making long term, sustainable changes around sleep quality, stress reduction and healthy diet.
His own experience taught him that he is not “bulletproof”.

“If it hadn’t been for the pipes and tubes and the drugs I wouldn’t be here. The message for me is you’ve got to find balance.”

*Names have been change to protect anonymity