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 a 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.
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 a plethora of 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 and my ‘internet footprint’ is now enormous compared to my actual shoe size. Consequently, I’m contacted daily from people finding me on google. Many of these people are at the pre-diagnosis or initial stages of diagnosis phase. 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. As an extra bonus to this post, I offer you a starting point for the best places I know for finding experts:
For Europe – here at ENETS: European NET Centres
For UK – here at UKINETS: UK NET Centres
For USA and others – here at Carcinoid Cancer Foundation: Find a Doctor
Neuroendocrine Cancer – 10 questions to ask your specialist
Many people ask me what sort of questions to ask and because NETs are such a diverse bunch of diseases, that leads to me ask them a series of questions to ascertain what they might consider asking. I’m not surprised to find some are unable to answer my questions and that those become some of their questions to ask! However, for those entering the diagnostic phase, you may find these questions cannot yet be answered without further test results etc. Consequently, I’ve constructed this list of 10 questions that should function as a generic set. There may be ‘specific to country’ questions to be added such as insurance cover.
1. Where is my primary tumour and what type of NET is it?
This is a fundamental question and it’s likely many will already have some inkling about location and perhaps a type. The difference between NETs 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, i.e. a NET of the pancreas is not Pancreatic Cancer.
The type of NET is key as it will drive a lot of other stuff including treatment. Location and type of NET are not always aligned, for example, you may have a NET in your Pancreas but there are several types of Pancreatic NET (or pNET) and these may depend on identification of a particular hormone (see syndrome below). For some the primary will not yet be found (i.e. cancer of unknown primary or CUP). There may also be multiple primaries.
2. What is the grade of my tumour(s)?
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. Read more here – Staging
4. Do I have a NET Syndrome?
Many NET patients will have 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. Syndromes are mostly caused by the effects of over-secretion of hormones from the tumours, a hallmark of Neuroendocrine disease. Read more here – NET Syndromes.
5. When will I start treatment?
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 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.
6. What is my treatment plan and what are the factors that will influence my eventual treatment?
This is a very complex area and will depend on many factors. Thus why your specialist may not have the answers to hand. See the starting treatment question above. Decisions on treatment are normally made some in some form of Multi-disciplinary Team (MDT) (in certain countries this may be known as a ‘Tumor Board’). They will only make those decisions once they have all the necessary test results in place. Some treatment might be one-off (surgery) but some may be for a much longer term, particularly hormone control.
7. What Surveillance will I be placed under
Again, this is very individual in NETs and is mainly dependent on type of NET, grade and stage and how the patients reacts to treatment. For example, surveillance scans can be any period from 3 months to 3 years. Marker testing is normally 6 monthly for many but could be more or less for others.
8. How will treatment affect my daily life?
This is a question that many people miss but it’s becoming more important. Again, this may not be possible to answer immediately but perhaps this question should be reserved once you know which treatment(s) you will be receiving. All treatment comes with side effects and some can last for some time and 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
9. Will I receive support and specialist advice after my treatment?
As an example, many people with NETs, 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 NETs might not offer the optimum advice. Read more – My Nutrition Series
10. Can you cure me?
This is a really difficult question for any specialist, even a Neuroendocrine expert. All published articles on NETs 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. So I guess in particular scenarios with certain NETs, and if the disease is caught early enough, that possibility exists. However, for many, the disease could be incurable, particularly when it has metastasized. But, the disease has many treatment options for most types and for many it is possible to live as if it were a chronic condition. I call it ‘incurable but treatable’. Read more here – Incurable vs Terminal
I suspect others will have suggestions for this list so feel free to submit these to me as I quite often refresh my posts over time.
Thanks for reading
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