Neuroendocrine Cancer: 10 questions your dietitian will ask

Translate

Background to Diet and Nutrition 

This is clearly an important topic for many patients.  In my group, it is the 12th most common topic out of 100 topics available. For some, it is their most pressing concern.  However, Neuroendocrine Neoplasms (NENs) are a heterogeneous group of cancers and so are people’s diet and nutrition issues and needs. Some people may not have any issues and for others, there is a dependency on knowing information about the patient’s type of NEN along with other information including comorbidities which might also be playing a part in driving the need. 

Access to Dietitians

I’m certain this is an unmet need across the world, even in rich and well-developed countries.  Without any disrespect for accredited dietitians, specialist knowledge of NENs is really important given the heterogeneity mentioned above.  Those with issues need individualised attention and advice. The average dietitian will be well versed in supporting patients with weight gain or loss and general nutritional advice…. but NENs have some vagaries which make them stand out and that average advice may not be applicable to many. Ideally, each NEN Multi-disciplinary Team (MDT) should have a “NEN aware” dietitian on board.  For example, the ENETS Centre of Excellence scheme is a useful indicator of the likelihood of having that “NEN aware” service available.  In UK and other counties, dietitians at large centres can even be made available for consultations/catchups with patient attending their MDT surveillance appointments as a convenience, but separate appointments are of course also possible. 

What do I tell a Dietitian? 

I turned that around by asking a “NEN aware” dietitian what questions they would ask a patient and I will post that below.  Some things are fairly obvious such as your diagnosis and general health background. It should not be assumed that your dietitian will have access to your medical file.  I’m fortunate that mine does and is therefore able to see my latest blood tests and MDT notes.  So, in my own case that might reduce the number of questions.

10 questions that your NET dietitian will ask you

  1. If your dietitian does not have access to your medical file, you will need to know your diagnosis information, e.g. Stage, Grade, Primary location, and any functional syndrome. 
  2. If your dietitian does not have access to your medical file, what treatment you have had or currently undergoing plus any other medical conditions you are currently being treated for? 
  3. What is your current weight and how has your weight changed over the last 6 months?
  4. What medications do you take? – particularly any for your stomach or bowels
  5. What are your bowels/stools like? (frequency, consistency, and colour)?
  6. What other symptoms do you have? (e.g. flushing, nausea, abdominal pain, bloating/wind)
  7. How is your appetite at the moment?
  8. What are you eating and drinking on a day-to-day basis?
  9. Do you take any nutritional supplements? Drinks or tablets
  10. Are there any foods or drinks you find that make your bowel or symptoms worse?

Preparing for your meeting

In addition to preparing to answer the above questions, it may be worth keeping a diary for a few days prior to your meeting of all the food and drink you have eaten or drunk, your bowel movements and any other symptoms as this will help you and the dietitian identify possible dietary causes of your symptoms.  

Ruth Lee, NHS Neuroendocrine Oncology Dietitian for the Wessex NET Group

I’m grateful to Ruth for providing the questions incorporated into this post.  Ruth is actually my own dietitian although I am not too demanding of her time.  However, I know her input is valuable for all patients in my local ENETS Centre of Excellence.  

Thanks Ruth

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 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.

Subscribe to my newsletter

Thanks for reading.

Ronny

I’m also active on Facebook. Like my page for even more news. Help me build up my new site here – click here and ‘Like’

Sign up for my newsletters – Click Here

Disclaimer

My Diagnosis and Treatment History

Follow me on twitter

Check out my online presentations

Check out my WEGO Health Awards

Like my new awareness page – click here or on the photo.  (Like rather than follow please!)

Check out my Glossary of Terms – click here

patients included

Please Share this post for Neuroendocrine Cancer awareness and to help another patient

 
 
 
Facebook
Twitter
Pinterest
WhatsApp
Email

Lanreotide: 12 more years

I once wrote a blog entitled “Four more years“.  I was watching the US elections back in 2014/15 and that phrase come up after it

Read More »

RonnyAllan.NET – Summary of November 2022

In November 2022, I was very active on my blog site as it was World Neuroendocrine Cancer Day on 10th Nov (although every day is

Read More »

In the news – new Neuroendocrine Tumour PET Fluorine-18 based ‘tracer’

This should be of interest, particularly to Canadians. (Not to be confused with 18F-FDG which is a different scan). For people waiting for imaging tests

Read More »

Incurable isn’t terminal

Opinion Words are important I was diagnosed with stage IV cancer in 2010.  OK, it wasn’t a really aggressive type but it had caused a

Read More »

The Inspirational Wilko Johnson: 12 July 1947 – 21 November 2022

Wilko playing at his last show. Oct 2022 in London. Aged 75. RIP Wilko Johnson – Neuroendocrine Cancer I have been following Wilko’s cancer story

Read More »

Neuroendocrine Neoplasms (NEN) – genetic related syndromes

Definitions – the differences between Hereditary vs Familial vs Genetic Disorders I wanted to start with these definitions because people may unintentionally use these three

Read More »

Neuroendocrine Cancer: Those who know, know!

Over the years of my advocating, I’ve tried to explain Neuroendocrine Cancer to many people outside the community.  Some ‘get it’ but many don’t.  Most

Read More »

Ask More, Assume Less

This is a great catchphrase from Neuroendocrine Cancer UK. It is partly based on the realisation that Neuroendocrine Cancer is no longer rare.  OK, that

Read More »

Piss off Cancer, it’s been 12 years since my “big surgery”

I’m still here I was 54 years and 9 months old at diagnosis on 26th July 2010.  For the first few months, I had no

Read More »

I love comments - feel free!

%d bloggers like this: