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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 left to live” (I watch too many movies!). On the day of diagnosis and period beyond, people tend to feel emotions of shock, denial, anger, and sadness, before going on to accept their situation. Yes, I ‘googled‘ but not a great deal really – although some things I found did frighten me. I wish I had found this article way back then.
As things progressed in the weeks after ‘D-Day’, I started to work out the sort of things to ask but even then, it was limited. I had been referred to an experienced NET team so I felt confident they would do whatever needed doing. In hindsight, I can now think of quite a few questions I should have asked. That said, I suspect my team probably gave me the answers without having been asked the questions!
My blogging efforts have turned into a ‘Community’ of sorts. Consequently, I’m contacted daily from people finding me on the web. Many of these people are at the pre-diagnosis or initial phase. Many are undiagnosed. Most are looking for information and some sound like they are already at the ‘acceptance stage’; some are frightened about the future; some are angry because they think they are not being told important information and some also feel they have been messed about or ‘fobbed off’ by their doctors. Of course, I’m happy to help but only after reminding them that I’m just a wee Scottish guy with the same disease!
I have to say that some people arrive on my site without a diagnosis but often seem to be very well prepared – the power of the internet I suspect. The questions I mostly get involve finding experts and then what questions to ask them.
Many people ask me what sort of questions to ask and because Neuroendocrine Neoplasms (NEN) (the technical term for both Neuroendocrine Tumours (NET) and Neuroendocrine Carcinomas (NEC)), are such a diverse bunch of diseases, which leads to me ask them a series of questions to ascertain some context – normally the 10 questions below. I’m not surprised to find some are unable to answer my questions and thus why the real need for the questions below!
Also, questions don’t end at the diagnosis phase, they continue and in fact, some of the answers to the questions below, may bring up new questions in your mind. Some of these questions can be asked time and time again in the event of issues downstream.
If you’re currently confused about the essential facts of your condition, you’re not alone. In a recent study, almost half of cancer patients did not know basic stuff such as grade and stage of cancer, and after their initial treatment, whether they were free of disease or in remission.
Pre-question Check
For those entering or are recently just beyond the diagnostic phase, you may find certain questions cannot yet be answered without further test results etc. However, if the answer is not yet known for whatever reason, at least you have it on your list for follow up appointments. Consequently, I’ve constructed this list of questions that should function as a generic set. There may also be ‘specific to country’ questions such as insurance cover in addition to this suggested list. Of course, some of you may not want the answer to certain questions, that’s perfectly understandable, so don’t ask!
1. Where is my primary tumour and how is that further defined?
This is a fundamental question and it’s likely many will already have some inkling about location.
The difference between NENs and other types of cancer is the primary can be found wherever there are Neuroendocrine cells rather than a specific part of the anatomy in terms of naming the type of cancer, e.g. a NEN of the pancreas is not Pancreatic Cancer.
The type of NEN is key as it may drive a lot of other stuff including treatment. Location and type of NEN are not always aligned and there’s also the factor of whether a tumour is functional or non-functional (see Q4 below).
For some the primary will not yet be found (i.e. cancer of unknown primary or CUP). There may also be multiple primaries. Specialists in Neuroendocrine Cancer are best placed to find unknown primaries – they know stuff.
Some NENs have additional classification to the primary location
e.g. Gastric NETs (stomach), needs a ‘type’
e.g. Lung/Thymic NETs, are either ‘typical’ or ‘atypical’
e.g. For Neuroendocrine Carcinomas (NEC), ask if large or small cell. (see Q2 below). e.g. If Grade 3 (see Q2 below), ask about differentiation (well or poorly)
See my Spotlight series on the different types of NEN (under construction but many are available and I am adding more, it’s a big job!) Click the picture to find your NEN.
2. What is the grade and differentiation of my tumour(s)?
Another fundamental question as this defines the aggressiveness of the disease and is absolutely key in determining overall treatment plans. Treatment plans for poorly differentiated can be very different from well differentiated. The differentiation if Grade 3 (High Grade) is a very important question. Read more here – Grading. If you have a poorly differentiated (Neuroendocrine Carcinoma) ask if large or small cell
Click on the picture to read more about why this is important to know.
3. What is the stage of my disease?
Fundamental to understanding the nature of your disease. Stage confirms the extent of your disease, i.e. how far has it spread. Again, this will drive treatment plans and long-term outlooks. Scans and biopsies/tissue sample are really important in determining the Stage of your cancer – check out my scans post here.
Click Staging or on the picture below to read more
4. Do I have an associated Hormonal Syndrome?
Many NET patients will have been experiencing symptoms prior to diagnosis, perhaps for some time. It’s possible these symptoms form part of what is known as a ‘Syndrome’ and there are several associated with NETs (very rarely with NEC). Syndromes are mostly caused by the effects of over-secretion of hormones from the tumours, a hallmark of Neuroendocrine disease. Carcinoid Syndrome is the most common but there are many more depending on the primary location, particularly pancreatic NET. NECs are not normally hormonal in behaviour. Please note that most NETs are non-functional.
Click on the picture below or here – NET Syndromes.
5. Can you comment on the potential for my type of NEN to be related to any familial or genetic aspects of cancer?
A small percentage of NETs (5-10%) are hereditary/genetic in nature, although some types will be more or less than this threshold range. This is mostly associated with those who have Multiple Endocrine Neoplasms (MEN) syndromes and a few other less common types of NET including Pheochomocytoma / Paraganglioma(Pheo/Para) and Medullary Thyroid Carcinoma (MTC) (the familial version of MTC is often referred to as FMTC). However, please note this does not mean that all those diagnosed with pancreatic, parathyroid, pituitary, Pheo/Para and MTC tumours, will have any hereditary or genetic conditions, many will simply be sporadic tumors.
Hereditary syndromes with NEC are very rare.Read more here or on the picture below.
6. What is my treatment plan, and what factors will influence the treatments you are considering? When will I start treatment
This is a very complex area and will depend on many factors. Thus why your specialist may not have the answers to hand if you are only just recently diagnosed. Decisions on treatment are normally made by some form of Multi-disciplinary Team (MDT).
Many people diagnosed with cancer expect to be whisked away to an operating theatre or chemotherapy treatment. However, for many this is not what actually happens. Depending on what testing has been done up to the actual diagnosis, it’s possible that even more testing needs to be done. Additionally, for those with an accompanying syndrome, this will most likely need to be brought until control before certain treatments can be administered; and even then, there may be checks to make sure the treatment will be suitable. Sometimes it’s a case of ‘Hurry up and wait‘. My first treatment was 6 weeks after diagnosis and that was designed to control my syndrome ready for surgery which was undertaken 14 weeks after diagnosis. Surgical decisions can be based on many factors – read more here. It’s also possible you will be placed on a ‘watch and wait’ regime, at least to begin with – this is particularly common with small asymptomatic pancreatic NETs. There may also be constraints on what guidelines your specialists are following (different regions may have different guidelines).
A general summary of NEN treatments can be found here or click on the picture below.
7. Will you be able to get rid of all my disease and what are the chances of recurrence or growth?
This is a really difficult question for any specialist, even a Neuroendocrine expert. All published articles on NENs will say they are a heterogeneous collection of diseases (i.e. consisting of dissimilar entities) which makes this question (and others) difficult. I have read articles written by the world’s foremost NET experts and they all have the word ‘curative’ mentioned in various places, normally associated with surgery. So I guess in particular scenarios with certain NETs, and if the disease is caught early enough, that possibility exists. Some low grade NETs at an early stage have a good chance of the tumour(s) being removed with curative intent or in some scenarios watch and wait with a very low risk of metastasising, particularly appendiceal less than 2cm, rectal less than 1cm, Typical Lung, Gastric Type 1, and small pancreatic less than 5mm. Surveillance regimes for these scenarios are based on guidelines in your area/region, some for up to 10 years.
However, for many, the disease could be incurable, i.e. where there are distant metastases. But the disease has many treatment options for most types and for many it’s possible to live as if it were a chronic condition. At the forefront of this approach is something called ‘debulking surgery’ which can very often extend life and improve quality of life and be managed by other treatments going forward. I call it ‘incurable but treatable’ and being metastatic doesn’t always mean terminal, stage IV in low grade metastatic NETs is not the ‘red flag’ it can be with more aggressive cancers – read more here – Incurable vs Terminal
8. What Surveillance will I be placed under and for how long?
Again, this is very individual in NENs and is mainly dependent on type of NEN, grade and stage and how the patients react to treatment. Further to question 7 above, this is also related to what guidelines your specialist is working with. This plan may not be known until you have undergone your initial treatment. For example, surveillance scans can be any period from 3 months to 3 years depending on tumour type(location) and stage/grade and time since diagnosis. It can also change if stability is achieved. Read more here – click here
9. How will treatment and/or surveillance affect my daily life?
This is a question that many people miss but it’s becoming more important as we all live longer with cancer. Again, this may not be possible to answer immediately but perhaps this question could be reserved once you know which treatment(s) you will be receiving. All treatment comes with side effects and can last for some time or even present with late effects after some years. The ‘consequences’ of cancer treatment need to be factored in earlier so that the necessary knowledge and support can be put in place. See also Unmet Needs for NET Patients
10. Will I receive support and specialist advice after my treatment?
Again, this depends on the NET type and other factors to a cerain extent. Let’s not be afraid of the word ‘Palliative‘, it does not always mean ‘end of life’ care. Another example is nutrition. Many people with NENs, the condition in combination with the side effects of treatment may necessitate an alteration of diet and this is a very individual area. I would also emphasise that dietitians not well versed in NENs might not offer the optimum advice. Read more – My Nutrition Series.
These questions, although detailed, are designed to be generic and apply in most countries. I suspect others will have suggestions for this list that may be country or region specific, but feel free to submit generic questions that you think are not covered above. I quite often refresh my posts over time.
Click here or on the picture below.
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. Some content may be generated by AI which can sometimes be misinterpreted. Please check any references attached.
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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