I’ve lost count of the number of diet related questions I receive online or are posted in my private Facebook support group. The question is normally worded along these lines: “What should I be eating if I have Neuroendocrine Cancer”. The answer is almost impossible. Here are a few of the reasons why these things get muddled:
1. Not everyone has access to a NET specialist, let alone a Dietitian who specialises in NET. So, they come to patient groups to ask about a very ‘heterogeneous’ group of patient diagnoses and experiences. Consequently, the responses are usually multiple and widely different. The person who asked is often left confused with bewildering opinions and options.
2. The heterogeneity of Neuroendocrine Neoplasms extends to dietary issues too. No single diet suits everyone with a Neuroendocrine Neoplasm. Moreover, many people won’t have any dietary issues at all and could be panicked by changing things that don’t need to be changed.
3. Quite a lot of diet and nutrition information seems to focus on “carcinoid syndrome” which only represents those with predominately serotonin secreting tumours that are functional i.e. around 10% of the total patient population. What about the other 90%? So many advocacy organisations, healthcare professionals, and even dietitians talk as if every single NEN patient had carcinoid syndrome associated with dietary problems – WRONG! This is partly caused by the fact that many organisations and many people still call our disease the antiquated and epidemiologically incorrect title of “carcinoid” and they think everyone gets carcinoid syndrome and needs testing for 5HIAA – WRONG! The whole issue is then exacerbated as patients spread these misleading statements. Many types of Neuroendocrine Cancer and many different associated syndromes will have different diet and nutrition issues. Add in pre-existing comorbidities and it becomes a real conundrum with conflicting requirements. Something which can only be decoded by a diet and nutrition expert who is well versed in Neuroendocrine Cancer including the associated syndromes and treatment side effects. And as I said above, some patients may not need dietary changes at all, and some might just need to tweak using their own simple trial and error.
4. All of that said, when I say “the best diet is the one that works for you” – clearly, I do not mean all the ‘claptrap’ and rubbish you find on the internet. Many of these things are cancer myths. Some of it is innocently shared in patient groups without realising all of the above. Also, there is information lacking context shared in patient groups, also due to the misunderstandings above. People mean well but they really don’t know anything about the person asking the very generic question in most cases.
I can’t stop people asking questions and I can’t stop people trying to help as best they can (except where this breaches my site rules). My advice to anyone asking the question to seek the knowledge from specialist dietitians with experience in Oncology issues and have knowledge of Neuroendocrine Cancer and the effects of two things: the treatment side effects and the syndromic side effects. Sure, also ask questions in patient groups but learn enough to know that your particular type of NEN has known issues and the solution may not be the same as someone answering who has a totally different experience.
It’s also worth noting that many patients will have regular issues (perhaps pre-existing) which are unrelated to Neuroendocrine Cancer and so regular diet and nutrition issues are something available from most dietitians. Patients should not expect to be told precise details of what to eat. Moreover, they should not expect to be told what will work for them – even an experienced dietitian might struggle to answer that. General guidance is what to expect. Tailored guidance from a professional is the optimum strategy. Trial and error are very often the best approaches. Don’t be afraid to accept and take some risks but manage them and continually re-assess.
Internet savvy patients will be able to find the best stuff online but it’s still always useful to run it past a NET-aware dietitian, failing that at least a NET specialist doctor or nurse, some of whom have become quite knowledgeable about these issues out of sheer demand and necessity. But be careful of the internet, there are a lot of food and cancer myths out there. And be careful about ‘celebrity’ or ‘fad’ diets out there, many are not designed for cancer patients and can cause harm. My own research is attached below, some contain links to professional input, mainly from world-renowned NET Specialist Dietitian Tara Whyand.
Article 1 – Vitamin and Mineral Challenges. This was co-authored by Tara Whyand, UK’s most experienced NET Specialist Dietitian. This blog provides a list of vitamins and minerals that NET patients are at risk for deficiencies, together with some of the symptoms which might be displayed in a deficiency scenario.
Article 3 – ‘Gut Health’. This followed on from the first two blogs looking specifically at the issues caused by small intestine bacterial overgrowth (SIBO) as a consequence of cancer treatment. Also discusses probiotics. Input from Tara Whyand.
Article 4 – ‘Food for thought ‘ The issue of amines and syndromes
Tara has operational dietitian experience plus has also been heavily involved in research in support of the nutritional needs of Neuroendocrine Cancer patients. She attends and speaks at many conferences and patient meetings. I am thankful to have her permission to publish her 2020 video webcasts containing the latest thinking on Diet and Nutrition for Neuroendocrine Cancer patients. The first video is a general introduction to the series plus the following linked episodes
- Episode 1 – Pancreatic Exocrine Insufficiency
- Episode 2 – Protein and Cancer
- Episode 3 – The Ileum and Ileum Surgery
- Episode 4 – Sugar, Cancer, and the Ketogenic Diet
- Episode 5 – How to Gain Weight
- Episode 6 – Hair Loss and Nutrition
- Episode 7 – Zinc
- Episode 8 – Chemotherapy and Supplements
- Episode 9 – Surgery and the Pancreas
- Episode 10 – Niacin
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional as they are not members of the private group or followers of my sites in any official capacity. Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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