Translate
Subscribe to Blog via Email
Ronny Allan
Opinion Post
Nothing in Neuroendocrine Cancer is ever black or white. One great example is diet and nutrition. 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 because everyone is different – even generalisations can be way off for many causing unnecessary changes and/or worries.
Here are a few of the reasons why these things can 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 (i.e. all different!). Consequently, the responses are usually multiple and widely different. The person who asked is often left confused with bewildering opinions and options. Moreover, those offering their tuppence worth often know nothing about the person asking and may be offering general advice which really needs tailoring for that person, and in some cases, may actually be detrimental in some ways.
2. The heterogeneity of Neuroendocrine Neoplasms also extends to dietary issues. 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 so called “carcinoid syndrome” which only represents those with predominately serotonin-secreting tumours i.e. around 10% of the total NET patient population. So many advocacy organisations, healthcare professionals, and even dietitians talk as if every single NEN patient has carcinoid syndrome associated with dietary problems – WRONG! This is partly caused by the fact that many organisations and many people still call our disease by the antiquated and incorrect title of “carcinoid” and they think everyone gets carcinoid syndrome and needs testing for 5HIAA – WRONG! What about the other 90%?
4. The whole issue is then exacerbated as patients spread these misleading statements. Many different 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. Sorting out the symptoms needs professional input. And as I said above, some patients may not need any dietary changes, and some might just need to tweak using their own simple trial and error.
But ….. the content of this post may be the most useful half a day of research you can find if the only question you have is “what should I be eating if I have Neuroendocrine Cancer”.
But ….. Spoiler alert – this post does not tell you what you should be eating (the intro above and the context of this post makes that clear) but for many it does cover much of the “why”. It is only then you can really take corrective action as an individual. Having a dietitian well versed in NETs helps too.
So …..be careful in patient groups
As no single diet works for every type of person let alone every single type of NET, asking what you should eat is potentially a dangerous activity in a room full of heterogeneous diagnoses.
If you are someone who wants to be told what to eat in enormous detail down to breakfast, lunch and dinner, then only listen to a dietitian who knows about (and understands) your diagnosis and subsequent treatments.
Here is my suggested prep for this meeting. Co-authored by a NET Dietitian. Click here or on the graphic below:
Be careful wording your diet and nutrition questions in groups
Be careful answering questions about diet and nutrition
I can’t stop people from asking questions and I can’t stop people from trying to help as best they can (except where this breaches my site rules). But:
1. The least they can do is to state their NET type, any syndrome issues, surgery details; and any comorbidities such as diabetes etc etc. Otherwise, it is impossible to even start to answer any questions on diet.
2. And those answering these questions need to not make assumptions about the person if they do not provide this level of information.
My advice to anyone asking the question is to seek 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 by keeping a diary.
Be careful online …….
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 2 – Malabsorption. Overlapping slightly into Part 1, this covers the main side effects of certain NET surgical procedures and other mainstream treatments. Input from Tara Whyand.
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. Note that \I get more hits on this subject from outside the NET community than from within, perhaps an indication this is a common issue in the general population.
Article 5 – ‘Pancreatic Enzyme Replacement Therapy’. The role of PERT (Creon etc) in helping NET Patients. Input from Tara Whyand.
Supplementary – The Diarrhea Jigsaw.
Supplementary – Low and High Residue Foods.
Supplementary – Lactose Intolerance the NET Effect.
Supplementary – Fructose Intolerance the NET Effect.
Supplementary – Low FODMAPS the NET Effect.
Supplementary – Bile Acid Malabsorption.
Tara Whyand – Friend of my social media sites. Article 6 – Featuring the 2020 video series by Tara Whyand RD (a lockdown project – the breakdown is below).
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
And be careful of ‘snake oil’ solutions online …..
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 plus lack of group moderation. People mean well but as I said above, they really don’t know anything about the person asking the very generic question in most cases. Join my group where this claptrap and rubbish is banned.
Disclaimer
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.
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.
Top 10 Posts & Pages in the last 48 hours (auto updates) (Click the titles to read them)
Thanks for reading.
Personal Facebook. Like this page please.
Blog Facebook. Like this page please.
Awareness Facebook Like this page please.
Sign up for my newsletters – Click Here
My Diagnosis and Treatment History
Check out my online presentations
Check out my WEGO Health Awards
Check out my Glossary of Terms – click here
Please Share this post for Neuroendocrine Cancer awareness and to help another patient
No Fear or Know Fear?
Edit: This article was written in 2015. Since then, I have moved to 12-month surveillance periods. I also changed the title as we are all
NET Syndromes – chicken or egg?
We’ve all heard the age-old question about the chicken and the egg? Scientists claimed to have ‘cracked’ the riddle of whether the chicken or the
Neuroendocrine Cancer: Fibrosis – an unsolved mystery?
What happened to me? Since I was diagnosed in 2010, I’ve always known about a fibrosis issue in my retroperitoneal area. It was identified on
Neuroendocrine Cancer – a difficult jigsaw
A few years ago, I received a request from a reader asking if I could write an article listing all the symptoms experienced by a
Neuroendocrine Cancer? – 10 questions to ask your doctor
On the day I was diagnosed, I hadn’t really thought about questions, the only one I actually remember asking was “how long do I have
Neuroendocrine Cancer: Beware But Be Aware
An awareness post from Ronny Allan BEWAREThere are a lot of scary diseases in this world. Take the lesser-known type of cancer that infiltrated my
Do you suffer from NET Brain?
A satirical look at the acronym or abbreviation “NET”. I wrote this after I noticed many non-NET people reading my blogs. The acronym ‘NET‘ (NeuroEndocrine
“You must be doing OK, you’ve not had chemotherapy”
If there’s a word which is synonymous with cancer, it’s chemotherapy. It’s what most people have in their mind when they are talking to a
Neuroendocrine Cancer – don’t break my heart!
Neuroendocrine Cancer has certain unique features whereby tumours can produce one or more symptoms which are known collectively as a syndrome. Some doctors may refer
A cup of tea
I would also mention those who contributed to my “Tea Fund” which resides on PayPal. You don’t need a PayPal account as you can select a card but don’t forget to select the number of units first (i.e. 1 = £4, 2 = £8, 3 = £12, and so on), plus further on, tick a button to NOT create a PayPal account if you don’t need one. Clearly, if you have a PayPal account, the process is much simpler
Through your generosity, I am able to keep my sites running and provide various services for you. I have some ideas for 2023 but they are not detailed enough to make announcements yet.
This screenshot is from every single post on my website and depending on which machine you are using, it will either be top right of the post or at the bottom (my posts are often long, so scroll down!)
Please Share this post for Neuroendocrine Cancer awareness and to help another patient
Discover more from Ronny Allan - Living with Neuroendocrine Cancer
Subscribe to get the latest posts to your email.
Hi, I have Net in the small intestine with metastasis in the liver since 2018, my first G 68 pet scan was in 2019 since this test until the last one last month august 6 I have something that my doctors don’t pay attention in my head and neck report said brain: physiologic radiotracer uptake in the pituitary gland. Otherwise , no abnormal radiotracer in the brain. Maybe you can help me with this interpretation. Last week my doctor check my THS was high and my T4 normal. So I don’t know if this results are because I have hypothyroidism or because is something wrong in my pituitary gland.
Thank you
Dolores
1. Uptake in the pituitary is very common. It’s normally a false positive (physiologic uptake)..
2. Hypothyroidism is high TSH low T4 and it’s one of the most common conditions in the title for females particularly. Thyroxine is one of the most prescribed drugs in the world backing up that claim. Plus also be aware that Lanreotide and Octreotide can mess with those levels.
I Thank you for your time and response. I am in Lanreotide,for 3 years, my sugar is high but when I have a blood test my 1ac is 5.2 so probably is the same with my results for thyroid.
I have a 2 different treatments, Lutathera don’t work after I finish my treatments the symptoms came back 3 months later more severe, then I had already 3 chemoembolization and Creon for my pancreas, I feel ok but I start to worry about the pituitary because I have headaches almost every day. I just to had migraines when I young so the pain is similar.
Know I feel better after your comments, thank you very much for your help.
Dolores