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Cancer patient told she wasn't 'positive enough' when turmeric didn't work – ABC News


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BERITA BAHASA INDONESIA
TOK PISIN
Topic:Alternative Medicine
A composite image of people who have engaged with complementary medicine. (By Magie Khameneh )
Ula Brown has never taken a contraceptive pill, used a "chemical deodorant" or owned a microwave.
"I think it stems from my family. My nana and my mum were both quite alternative," she says.
"Things were treated a lot at home before we would see a doctor."
Some of these beliefs live on through Ula's own children.
"My daughter has had a home birth. She had a qualified midwife, but she was quite happy to have a birth without intervention," she says.
Ula believes conventional or modern medicine is overused and misused.
It is a "band-aid solution" for covering up symptoms without addressing the cause, the 48-year-old says.
So when she received a breast cancer diagnosis three years ago, it wasn't just her body under attack — her whole belief system was "about to get destroyed".
"I had always used alternative health, and I didn't feel like I wanted to go down the route of just chemotherapy without seeing what alternative medicine could be there for me," she says.
Have you used complementary or alternative medicine? Has anyone you know? Or are you providing it? We want to hear from you.
Desperate for a second, third, and fourth opinion, the Queenslander travelled to integrative doctors who had a holistic approach to health, and consulted a naturopath.
They all told Ula that chemotherapy would be her best chance at beating it — and to get with the program fast.
"I had lost a friend to breast cancer about 15 years prior, and I know that it took a little while to make that decision," she says.
"And then by the time she made that decision, it was too late.
"For about six months, she did decide that she would treat it just alternatively — with yoga and through natural medicines.
"But then it did progress unfortunately, and it metastasised to her brain.
"And so I just thought, I have to give this everything that I can give."
In preparation for chemotherapy, she let go of her hair.
Never more than a text or a video call away, it was the naturopath that Ula turned to with queries — and doubts — about her treatment.
"She was just assuring me that what I was doing was the right thing to be doing," she says.
But Ula had also started another protocol — one she kept secret from her doctors.
"I just didn't feel that I was strong enough to put up a fight with them," she says.
Cancer Council says patients should consult their GP and medical team before trying any new therapy.
All up, Ula estimates she spent at least $10,000 on the side treatments.
It included taking supplements, undergoing $400 vitamin C infusions, and having a $5,000 blood test that promised to determine "the most suitable and successful" cancer treatments.
Cancer Council says the type of blood test Ula took is being studied for accuracy, therefore it is not recommended without consulting a doctor.
Ula believes it is the "other treatments" that fast-tracked her return to the gym.
"I definitely believe that I've bounced back because of the additional therapies," she says.
"But be extremely cautious of people who are making claims that they can cure cancer."
Tell us about your experience with complementary and alternative medicine here.
There is no hard data for how many Australians use complementary treatments, although the industry peak body estimates it could be as high as 75 per cent of households.
Complementary Medicines Australia says the "significant growth" in recent years is driven by an aging population, a rise in chronic conditions and a focus on disease prevention.
Complementary therapies exist alongside conventional medicine, whereas alternative treatments are used instead of it.
Dr Emilia Dauway is a breast cancer surgeon by day.
And a yoga instructor by night.
She believes there is merit to some complementary therapies, but is dubious about the extravagant claims spun by the alternative medicine camp.
"When we start looking at an alternative to things that have been proven, where's the evidence or the rigorous research done to validate those treatments?" she asks.
Cancer Council says while complementary therapies like meditation and acupuncture can help a patient cope with the impacts of cancer such as nausea, fatigue and pain, there is no evidence they can treat or cure cancer on their own.
Many alternative therapies, however, have not been scientifically tested while others have shown to be harmful or not work, it says.
Dr Dauway — who is on the leadership team of the Australian Medical Association — has observed a growing interest in unconventional therapies in her own patients.
Sometimes, to the detriment of medical intervention.
"I think it's important for us to respect a patient's decision. It is their life," she says.
"We can't do anything that they don't want us to do, so being able to support them in those decisions, even if the outcome isn't the optimal outcome that is desired.
"Sometimes it is too late and we can't cure the patient. We might be able to intervene and extend some of their life."
She implores patients to push their practitioner for proof.
"If they're not providing evidence, and they're not providing what the survival rates are — or the recurrence rates are — with a particular intervention, then to me that's not getting informed consent," she says.
"I think to some extent [that] would be considered unethical."
The medicines watchdog received more than 800 adverse event reports about complementary remedies last financial year.
Over 600 requests were made by the Therapeutic Goods Administration to remove unlawful advertising, including for traditional and alternative treatments, from digital platforms.
But on social media, unvetted medical advice and wonder cures from around the world continue to run rife.
Dietitians Australia says the carnivore diet, which consists of only animal products, is "extremely restrictive" — and that scientific evidence shows diets high in saturated fat will raise cholesterol levels.
The Australian Dental Association says there have been no clinical trials for oregano that show benefits for tooth decay prevention or repair.
The Royal Australian College of General Practitioners (RACGP) says it is risky to take advice from people who are not across your medical history, whereas providing such counsel may lead to the exploitation of vulnerable people.
"Oh, there's a lot of woo. You know, 'marijuana fixes cancer'. Yes, well, why is Bob Marley dead?"
Sally Catherall's blood cancer diagnosis sent her to the sites of medical journals, but also down the social media rabbit hole.
In Facebook groups curcumin — a compound found in turmeric — was touted as the silver bullet.
Cancer Council and the TGA say there is not enough evidence at this time to recommend curcumin as a cancer preventative or treatment.
Back in 2013, Sally still had smouldering myeloma, whereby treatment is delayed until the disease becomes active and starts affecting the organs.
Hoping to stop it from progressing, Sally says she obtained clearance from her haematologist to take curcumin.
For the next 10 months, she took six capsules a day, churning through $80 bottles.
"It didn't do a thing. And the reason why I know it didn't do a thing is because I've kept a chart, a spreadsheet, of all my bloods," she says.
"The only thing it did was help clear my bank account of money, it did nothing to clear the cancer."
Myeloma Australia says elevated protein level is one of the first signs someone may have the disease, although further testing is required.
Sally's tests show that while she was only on curcumin, the protein levels kept climbing, reaching 130 grams per litre.
She reported back to the Facebook group.
"Some people said, 'Thank you, we appreciate that'. Other people said, 'Oh, you're not being positive enough'," she recalls.
"But there was no-one else in the group saying, 'Yeah, it's really working for me'. It was all hope, hope, hope."
Two stem cell transplants, just as many cycles of chemotherapy, and side effects from myeloma medication have left Sally "fatigued".
Preparing for death gives her "a sense of control".
"I went to a coffin-making course and made my coffin.
"At the front I've got … a stone bench to put on my grave.
"I've already bought my burial site, so I know where I'm going."
That she is still here is thanks to modern medicine, Sally says.
"I don't believe in alternative medicine, especially at the expense of real medicine," she declares.
"If it worked, everybody would be on it."
Jess is a naturopath at a community clinic that offers free herbal medicine and consultation. 
For many of her clients, it is the only healthcare they can afford.
"They might need to go to a doctor, but they cannot access it," she says.
Tasmania, where Jess works, has only three GP clinics that bulk bill all patients — and one of them is shutting down next year.
It also has the highest average out-of-pocket GP fee of all states at $51, according to Medicare.
Across the country, 11 per cent of people in the lowest socioeconomic areas delayed buying — or went without — prescription medication last financial year due to cost, the Australian Bureau of Statistics reports.
"We often have people come through that, for example, have diets that are largely based on sandwiches, and they eat once a day," Jess says.
"So we're working with how we can incorporate herbal medicine to help support their body through this really trying period."
The Australian Medical Association's advice is to be careful when taking herbal supplements as it can be difficult to ascertain what they contain.
Today is "medicine-making day".
To stock the community clinics…
 …with tinctures, tea blends and salves.
Volunteers from Hobart Herbalists Without Borders gather around coordinator Monica Francia.
Monica says she draws on "a long tradition of use" and "scientific research" when choosing the ingredients.
"This is a rose tincture, which is really good for emotional support, anxiety, particularly indicated for trauma or PTSD," she says.
"So just dried rose petals blended up with water and alcohol."
The TGA says it has not approved any medicines containing rose for treatment of moderate and severe anxiety, depression or PTSD.
Running on an ethos that everyone should have access to free herbal medicine, the team at Hobart Herbalists Without Borders has been dipping into their own pockets and relying on grants to finance the initiative.
More recently, they've looked at becoming an NGO to attract funding and build on the three community clinics.
Monica says patients present with a range of conditions — from depression and chronic pain to diabetes and cardiovascular disease.
"We don't tell anyone to go off medications or anything, but there's herbs that we can safely use alongside that to better manage those conditions," she says.
When a patient says it works, could it be the placebo effect?
"For sure, and it's the same with any kind of therapy, whether it's herbal, pharmaceutical, lifestyle — people can get a placebo effect," she says.
"And, I mean, that's fine. If they're getting better, I'm happy.
"I'm not against pharmaceuticals or conventional medicine.
"I, as a naturopath, love herbal medicine and have seen it work very well for myself and for people around me and my patients."
The medical landscape is expanding, with the peak body for general practice (RACGP) including integrative medicine in its curriculum.
It is the blending of two approaches — conventional medicine and evidence-based complementary medicine.
Integrative medicine chair Dr Tamara Nation says many people from culturally diverse backgrounds use Indigenous, Ayurvedic or Chinese medicine.
"It's about providing individuals with options for treatment of medical concerns where appropriate," she says.
"Lifestyle, nutrition advice, exercise advice, psychological wellbeing advice, meditation advice … can sit beautifully alongside antidepressants or pharmacological advice."
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