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.
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.
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.
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.
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
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