The nutrition maelstrom for cancer patients - transcript

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Aileen: Hello and welcome to the safefood podcast. I'm Dr Aileen McGloin, Director of Marketing and Communications at safefood.

And this is a special edition of the Nutrition podcast series, where we're bringing you recordings from a symposium hosted by safefood at the 2019 Federation of European Nutrition Societies conference in Dublin.

The symposium asked, ‘What advice does the public believe?’, and outlined challenges for researchers, policymakers and practitioners. Each one of the four contributors is available to listen to individually.

This is Eileen O'Sullivan, who is a patient advocate for people with cancer.

Eileen: Good afternoon everyone, and thank you to safefood for inviting me here today to share my experience and thoughts as a cancer patient advocate on the topic of nutritional information, misleading advice, disinformation, and downright nutribabble that envelops every aspect of the cancer patient's journey.

Some of this misinformation is not intentionally given, but that doesn't negate the potential harm. However, there is a significant number of players that are commercially driven and are ruthlessly predatory, specifically targeting cancer patients as a lucrative customer base. My aim is to outline the reasons that cancer patients are particularly vulnerable, potentially endangered, and exploited in this respect.

I'm often asked, where does all the nutrition misinformation come from and how do patients access it? And I say, it is everywhere. It is pervasive and it's getting worse.

So Robert has touched on some of the points there, but why is nutrition of importance to cancer patients?

I have no nutritional expertise, so I will quote the data and research, and I want to thank oncology dietitian Veronica McSharry of the Mater Hospital, and Dr Aoife Ryan of UCC, for providing me with this. Many of you may be familiar with this data, but for those who are not, here's just a small snapshot.

Cachexia is responsible for 40% of cancer patient deaths. Several large-scale studies over the last 35 years have reported that involuntary weight loss affects 50 to 80% of cancer patients with the degree of weight loss dependent on tumour type, tumour site type and stage of disease. Involuntary weight loss, and particularly, loss of muscle, which can occur even with stable weight, increases the risks of chemo and radiotherapy side effects, increases admission rates, and length of hospital stay during cancer treatment and surgery.

Weight loss is also linked with reduced quality of life, and frailty in cancer patients. In surgery, weight loss has increased complications and length of hospital stay, and could delay return to adjuvant treatments such as chemotherapy.

As Robert said, in Ireland, there are, he said 33, I had 34, dietitians working in cancer care, ranging across the full patient journey: diagnosis, treatments, including surgery, chemotherapy, radiotherapy, survivorship and palliative care. As he said, this roughly equates to one dietitian for four and a half thousand patients. I mean let that sink in.

Recently there was an Irish Cancer Society conference, it's an annual conference, for patients, and there was many stories there of patients who just couldn't get access to nutritional support. Many said they would drive the country if they could actually get access to dietetic support.

So a bit of personal background, my cancer diagnosis was January 2013, I was diagnosed with triple negative breast cancer, and as there was an extensive history of breast cancer in my family, I was tested and confirmed to have inherited the mutative BRCA1 gene from my mother, who died of breast cancer in her early 40's.

My treatment plan was firstly focused on treating the disease, and secondly, further surgical measures to reduce breast and ovarian cancer risk going forward. I had chemotherapy, surgery, radiotherapy, further surgeries for risk reduction, and breast reconstruction.

One day, life was ticking along grand, and then there was this diagnosis, and a long path of treatment and procedures ahead, with no certainty of the outcome. It was daunting. A cancer diagnosis brings along with it a raft of strong and uncomfortable emotions. All very heightened and difficult to unbundle from each other. Shock, denial, fear, anger, guilt, anxiety, huge uncertainty, lack of control and powerlessness, financial fears, body image anxieties, sexual concerns, and many more.

The most dominant emotions that I had were lack of certainty, will this treatment work? And lack of control, handing over my power. It is only in hindsight that I can recognise how vulnerable I was at that time, and also my loved ones.

The overwhelming need to bring back some element of control into my life was huge. I found it very difficult to pass over control to my clinical team, even though I was aware that I had one of the best teams in the country, and I knew that my treatment plan would give me the best chance.

Trust in clinical teams and realistic hope, is so important to cancer patients. And this is a very important point that quacks try to undermine this trust between patients and their clinical teams.

At times, I couldn't help but feel like a passive passenger in my own cancer treatment journey. What was my role? Did I have any input or did I just have to turn up for appointments?

However challenging and emotional impact this was for me, with a primary diagnosis, although still a serious diagnosis within that, I can only begin to imagine how magnified this must be for a person who's stage four at diagnosis, or as a person whose disease progresses and is living with metastatic disease, and all the complications that entails, and specifically nutritional ones.

So when I was diagnosed did I get any nutritional assessment or advice? In short, not really. The sum total of nutritional related advice that I got from the nursing coordinator was, your weight is fine, try to keep it stable, eat as you've been eating, don't drink around chemotherapy, if you have nausea, take your anti-sickness meds, if you've vomiting or diarrhoea for more than a couple of days, particularly with a temperature, get yourself to oncology daycare, or outside of hours A&E is faster if you can.

With this ominous warning, things can go very wrong very quickly. Thankfully, I didn't experience these negative side effects, but I have seen these crises many times with my fellow cancer patients.

This was very relevant information, but as you can judge, it wasn't very detailed nutritional advice, and in no way empowering. Neither was I pointed in a direction as to where I might find appropriate nutritional info. I had a fairly healthy diet before I was diagnosed with cancer, and I hoped that I would be able to continue to enjoy that diet while going through treatment with those potential side effects.

I relish food. I love cooking and I enjoy sharing meals with family and friends. However, I did want to ensure that I would be sustaining myself as best as possible with the extra demands the treatment was likely to bring.

I also, like many patients, had a strong need to regain a semblance of control, in relation to some aspect of my cancer journey. But without having the benefit of a nutritional status assessment or oncology dietetic support, where do patients like me go for information, or even without specifically searching for information, where does this information come at them?

Well, there's the reputable websites such as Irish Cancer Society, Macmillan Cancer Research UK, and World Cancer Research Fund, and the American Cancer Society. However, it's really worth noting that if a patient googles for cancer and nutrition, these are not the first websites that come up, they certainly weren't back in 2013. I believe this is improving as representations have been made to Google and other search engine organisations.

The information on these sites is evidenced based, but sometimes patients are looking for a more personalised and interactive approach.

Family and friends are another form of information, they really want to help and reassure their loved one, they can feel helpless. But they're vulnerable also and can be just as susceptible to woo and nutribabble, as the patient themselves.

In fact, loved ones can pressure the patient in this respect. I was reminded of an example of a dietitian in a hospital recently, who told me of a patient, when she asked him would there be anything that he'd like and he said, "I'd love a Mars bar" and she said, "I'll get you one." And he said, "No I can't, because I promised my family. It's feeding my cancer." This man had only a couple of days to live.

So I mean, that's how entrenched it can actually be, and how much pressure patients can be put under.

Personally, I had a lot of love and support around me, but I also received a raft of codswallop. Codswallop advice, from even you know, fairly well-informed people and fairly well-educated people. Books on nutrition and cancer, I could fill a library, supplements, anecdotes, and sent so many links.

For the patient, it can bring further pressure, am I doing enough? The online sources, and there just isn't enough time to go into all of this here, and social media, I could be here until tomorrow, going through it. But many or all cancer patients, or most cancer patients, go online or to social media for nutritional advice, where they will find an avalanche of diet, food, nutritional advice, and related offerings, specifically aimed at cancer patients.

Once they take this route, through cookies or whatever type of monitoring, their social media accounts and emails and timelines and emails will be full with offers of product, services, and advice, whether they want it or not.

Non-evidence-based sources, hugely outweigh evidence-based advice from reputable sources, and it can be very difficult, as Rob has outlined, for patients to discern between both.

A pseudoscientific marketing can appear very credible. It is much more customer friendly than evidence-based science. Nutribabble peddled at cancer patients is an enormous business, and going online is like being in the nutritional Wild West. There is everything there from the likes of Jo Mercola, the multi-million dollar business, to bloggers, to bio-hackers, to celebrities, influencers, chefs, naturopaths, chiropractors, wellness gurus, and Goop and Gwyneth Paltrow come to mind on this, and even engineers who feel they can find the root cause of cancer. But there is always subscription, a book, a conference, a wellness event, affiliated links, products, service, or advertising to sell.

Patients promoting their nutritional philosophy is also rampant. There is really good information online, but a patient really needs to know where to look. It can be very difficult for a cancer patient to navigate all of this, and know what is credible and appropriate, and what is not. It is really overwhelming, I cannot tell you how overwhelming it is.

There are also diet movements, or as I will call them diet cults. And they act like cults, in every sense of the word, seeking to find converts. They are emotionally aligned with their nutritional beliefs, and can be very aggressive in promoting their ideology, and if that means harassing, or shaming a cancer patient online, or attacking them for not implementing their diet, they will do so. And they hunt in packs, and they attack in packs. Diet shaming of cancer patients is a nasty and growing tactic.

Often these diet movements have, what I, and although people who know better than I, will call renegade MD's, Rob has alluded to it there earlier, as their leaders. Let me give you an example, and this is not at all unusual, there's currently an MD from Tennessee, who is the darling of the ketogenic diet movement. He's been on probation from his medical licence board for two years, and has a further two years probation to go. His offences are many, including reusing syringes, storing unmarked, open patient samples, in a fridge where food was also being stored, carrying out vampire facials, prescribing substances for himself and family members against regulations, and many more.

That's the tip of the iceberg. He was described by the Tennessee medical licensing board as being unprofessional, unethical and dishonourable. Last week he posted a YouTube video to social media, Facebook, and Twitter, and Instagram. In the video, and associated tweet, he claimed cutting sugar, completely eliminating grains and seed oils, and implementing intermittent fasting can flip epigenetic switches to turn off your genetic risk of developing breast cancer. Tell that to a woman with a BRCA1 gene.

This was bad enough, but this tweet and the attached YouTube, was retweeted and liked thousands of times. He has tens of thousands of followers. When a patient reads this tweet, and doesn't know the back story, and most of them wouldn't, they just see an MD, who they will consider as giving evidence-based advice.

This is not an isolated incident, it's widespread. The result of all of this is that patients can be confused, attach themselves emotionally to a diet movement, which can have serious consequences.

Clinicians and dietitians report patient state as being impaired by implementing fad diets, and restrictive eating. And sadly, it often creates food fears, and/or obsessive feelings and behaviours around food, taking away the wonderful pleasures of eating delicious food.

Other sources of information are patients, and patient forums. I am a strong advocate of patient involvement in all areas of the cancer ecosystem and cancer care. I also believe that patients are a truly wonderful support to each other, in so many ways, along the cancer journey. But there can be downsides. As patients we're not experts, but it's quite common for patients to share information of non-evidence-based complementary and alternative therapies and fad diet protocols. In day oncology wards, WhatsApp groups, Facebook groups, and patient forums, many patients exchange their nutrition tips. Back in 2013, green juicing, the alkaline diet, detoxing and clean eating, were all the rage, as was dairy restriction. Now it's the low carb, ketogenic diet and intermittent fasting.

Sadly, I've witnessed the repercussions of patients implementing fad diets with nutritional crises, inpatient stays, reduced chemo dosages, or postponement cessation of treatment, and overall poor quality of life.

This is actually a very difficult subject for me, as I absolutely support the right of every patient to choose what treatment and nutrition protocol they consider is right for them. Patients are powerful influencers over each other, they are tremendous advocates for their fellow patients, but with patient advocacy, and I mean patient advocacy specifically here, comes a responsibility to other patients. Patients can be unwittingly pawns in a bigger game of quackery, and can, in a sense, be effectively recruited to endorse and disseminate misinformation and pseudoscience.

Nutrition is one of the biggest areas in this respect. It really pains me to mention this reality of patients misinforming other patients, and in fact, it is one of the most difficult sources of quackery to challenge. Who wants to call out a cancer patient? When a cancer patient has a related commercial business, or is a celebrity in their own right, that can be a dubious mix. And we really only have to remember the story of Belle Gibson, now she might have been outed as a fraud, but we really have to remember the influence that she had, the notoriety, I suppose, the presence that she got, book deals, a Apple WhatsApp on the first Apple watch. There was not a lot of due diligence done on this, and she really gained an awful lot of momentum.

Social media firms have facilitated and permitted dangerous woo and misinformation to be disseminated on their platforms, without, seemingly, any accountability or penalties. Reporting of fake news and endangerment to these platforms has been fruitless for the most part, it's not deemed to be going against their community rules.

In a recent positive step, some of the social media platforms here in Ireland are working with the HSE to point users in the direction of evidence-based advice on vaccines. The cancer space needs to be addressed similarly, and it can't come too soon.

To mainstream print and media, this is a mixed bag, some are more responsible than others, but unfortunately click bait sensationalist stories sell, but this adds to the confusion of patients. Conflicting information, information tagged as breakthrough, that is either pre-clinical or mouse studies are common.

And don't even get me started patient crowdfunding stories. Here in Ireland we have had one of the papers of record giving a platform on a number of occasions to unqualified celebs and chefs to spout their views on nutrition, and nutrition as it relates to cancer, even when they were advised by experts that was irresponsible to do so. The response from the editor was this was to give readers a balance of opinion.

To be honest this is very disappointing, all opinions are not equal when it comes to expertise in nutrition and cancer. I would also like to acknowledge though, that it can be very difficult for media, sometimes, to run certain stories, or to challenge certain charlatans, as these people can be very litigious. Litigation threats have been a very successful silencing weapon. Litigation is also a significant risk for cancer professionals, dietitians, scientists, charity organisations, and professional bodies who speak out.

Vexatious complaints to medical boards, and to researchers or universities is another tactic. And as cancer patients we ask experts to speak out all the time. We ask them to be in the space where we're seeking information. But it's very hard to ask them when they're putting the career on the line, and they're risking their career and being sued.

What are the marketing strategies of those promoting nutribabble to patients? Like all good marketing, it targets the emotions of the buyer. In the case of cancer patients, some of the emotions targeted are fear, desperation, guilt, anger, doubt and hope. Marketing messages can be guilt and fear inducing, which can be very upsetting and hugely emotive and traumatic for cancer patients. It can imply we caused our cancer, are harming ourself, feeding our cancer, and so on.

The tactic of promoting conspiracy theories such as big pharma wants you to be sick, are also common. All of this can lead to phobias, rituals, and stress around food, contributing to nutritional status impairment, and taking away the pleasure of food. I remember one cancer patient telling me that she was getting very upset 'cause she'd eaten six cherry tomatoes on one day and a half of a mandarin orange, and she'd eaten too much sugar.

So it's this kind of phobias that are very very detrimental to cancer patients, both physically and psychologically. When blaming the patient is not the tactic, there's normally another villain created. It's the sugar, it's carbs, it's the nutritional guidelines, it's the dairy, et cetera. It's an incredibly powerful tactic, creating a villain in the piece. It taps into the emotions of blame, anger, feelings of unfairness, and gives an opening for the crank to offer solutions which may appear less daunting.

Targeted messages such as conventional treatment is just slash, poison, and burn, this is deeply upsetting, and it's a cruel message. For example, for patients facing mastectomy. But then they will offer you the X diet to try instead. Another one, the answer to cancer is in nature, magic foods, soursop, pawpaw. Cancer is a modern disease apparently, more people are being diagnosed with it, so therefore try eating like a caveman, and by the way, buy my caveman diet book.

The toxic food message, as Rob has said, is everywhere, even including water. So we're having alkaline water being targeted and being sold, and alkaline machines to alkaline your water, to cancer patients.

Eat organic, this is another very strong one. And recently, the Guardian newspaper in the UK, had a very misty-eyed piece, and they texted out the piece saying, creamy and untreated in a glass bottle, Britain gets a taste back for old-fashioned milk. But this was raw milk. At least we had a microbiologist who came on and said, "I cannot say strongly enough, for the love of God, do not drink raw milk." And we had some oncologist coming on saying that they had cancer patients who had died as a direct cause of drinking the raw milk, and not from their cancer. So it is really, really serious.

Another one, if you've cancer, why wouldn't you throw everything at it? It's not always sensible to add something else in, like a restrictive diet. Chemo doesn't work, it spreads cancer, cancer is big business. Well, maybe, but so is quackery. 'Your oncologist or dietitian doesn't have your best interests at heart.' So it's all the time, trying to undermine evidence-based medicine and and trust in your clinical team. 'Treat the root cause not the disease', this is a very common one. Don't have chemotherapy, treat the root cause of your disease.

So what are a lot dieting claims? I'll run very quickly through them, the ketogenic diet is probably the big one, alkaline, the paleo, carnivore, green juicing diets, dairy free, super foods, devil foods, antioxidants, food detoxes, clean eating, fasting. Fasting is becoming a huge one, and intermittent fasting, and that is really really dangerous. Clean eating, raw foods, another problem, the Gerson protocol, the Budwig protocol, curative foods like apricot kernels, graviola fruit, turmeric, and functional foods.

And shame on you Bord Bia, from this cancer patient.

So is it a lost cause? Is it a steamroller that cannot be stopped? For the safety and public, this cannot be the case. There are steps that are being taken that have proved to be effective, but we need more, this is just a few examples.

The Irish Cancer Society, and other cancer charities, INDI, and a loose collective of clinicians, dietitians, particularly oncology dietitians, cancer researchers, GP and patient advocates, have worked together to better inform patients and the wider public, of risks of misleading nutritional advice, and point patients towards evidence-based resources. Irish Cancer Society has run a number of excellent events over the last year, headed by Rob. The decoding cancer events, and many of them were on nutritional information, and they were really excellent.

Breakthrough cancer research has produced some excellent nutritional information booklets that are evidence-based, and written by nutritionists and oncologists. They are free in the cancer hospitals, and can be downloaded free online. Working with media, cancer experts and dietitians have sought to inform patients and public, by writing articles, going on the radio and TV programmes.

In March 2018, RTE Primetime Special investigated, had a special program, on the amount of misleading advice to cancer patients. It's well worth looking back over that. This was a real eye-opener to the wider public, and had a very positive effect. And this was highlighted by the fact that certain global diet movements, who considered that it had damaged their image, aggressively attacked expert contributors to the programme and social media, in their droves afterwards. This went on for over two months.

Experts and patient advocates have taken to social media to counter misinformation when it arises, but we need more of this. This is something that many of us would rather not have to do, but it is obviously vital, as it's where most of this misinformation is rampant, and spreading, and where patients source their information.

PPI, patient and public involvement, the involvement of patient in advocacy research, and other sectors of the oncology ecosystem, is already bringing about very positive signs of change. But clinicians, dietitians, researchers, and patients, working collaboratively to influence policy in cancer care. Importantly, professionals, cancer charities, and patients have been working with public representatives and legislators to bring regulation to protect cancer patients.

The Treatment of Cancer Act has already passed certain stages in the legislative process, and hopefully that will be in place in the not too distant future.

We have witnessed the voices and the spin of some significant influential promoters of cancer woo and nutribabble here in Ireland reduced, but they have not gone away. It's not a once-off intervention. There needs to be effective communication with patients and wider public, on an ongoing basis.

So it's about appropriate nutritional support, information, communication, patient empowerment, regulation and accountability.

Aileen: That was Eileen O'Sullivan, who is a patient advocate for people with cancer.

This podcast was recorded at a FENS symposium in the Convention Center in Dublin.

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Until the next time, goodbye.