09Nov 2022 by Ronny Allan No Comments

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Ronny Allan

Award winning Neuroendocrine Cancer Patient Advocate. Diagnosed with Metastatic Neuroendocrine Cancer in 2010.

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

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.
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?
What is your current weight and how has your weight changed over the last 6 months?
What medications do you take? – particularly any for your stomach or bowels
What are your bowels/stools like? (frequency, consistency, and colour)?
What other symptoms do you have? (e.g. flushing, nausea, abdominal pain, bloating/wind)
How is your appetite at the moment?
What are you eating and drinking on a day-to-day basis?
Do you take any nutritional supplements? Drinks or tablets
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.