Home » Living with Neuroendocrine Cancer » Neuroendocrine Cancer – the surveillance merry-go-round

Neuroendocrine Cancer – the surveillance merry-go-round

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surveillance

If I had a pound for every time I’ve said “make sure you get good surveillance”, I’d have a lot of pounds! Most Neuroendocrine Tumours are slow-growing and they can be difficult to diagnose due to their sneaky nature. Some can be just as sneaky beyond diagnosis though. The best way to combat that is through regular surveillance or ‘follow-up’. There are actually guidelines and recommendations for follow-up on the main NET specialist societies such as ENETS, NANETS and UKINETS, and the type and frequency of surveillance will depend on a number of factors, including but not limited to; stage, grade, primary location.

Let me also tell you that there isn’t really total common ground on exactly what that should be, although to be fair there’s much more agreement than disagreement. There’s even occasional mentions of “not enough data” to be able to say what the surveillance should be in certain scenarios. It’s not an exact science. So surveillance can be anything from monthly to recommended intervals such as 6 months, 12 months, 3 years and I’ve even read something which said “no specific follow-up strategy has been recommended” (as in “curative resection of an Appendiceal NET less than 1cm by simple appendectomy“).  Don’t forget these are guidelines, NETs can be a very individual diseases and your doctors will be considering a wide number of factors and variables.

So what sort of surveillance might be needed?

I think the definition of surveillance is actually wider than the guidelines infer. In addition to the planned follow-up surveillance, I also think there are checks that might be described as ‘opportunistic’. A simple example … if a nurse visits you at home, he or he might ask how things are. Similarly if you visit a GP/PCP, this could be an opportunity to assess the issue you are having against your medical history. Again, if you call your NET specialist or NET Specialist Nurse, this could be another opportunity to assess a problem, albeit over the phone. The other surveillance I would like to see more ‘formalised’ would be the surveillance of the consequences of cancer and it’s treatment – this is a huge unmet need in many cancers.  Examples include (but are not limited to) the issues of vitamin & mineral deficiencies and gastrointestinal malabsorption.

However, the documented and objective surveillance methods are really important and can be very similar to those which were used to diagnose you. These are…..

Scanning

Scanning is very important because the locations of tumours should already be documented and can therefore be tracked, or in the case of an unknown primary, continue to look.  Scans are looking for tumours or suspicious objects and any progression of known tumour sites. There are different scans for different purposes and even for different parts of the body and NET type.  Check out my article If you can see it – you can detect itclick here.

scans for nets

Tumour Markers and Hormone Levels

You will have baseline test results which will be compared at each planned surveillance opportunities. Whilst there are common tests available, some types of NETs may need particular tests.  These tests may even be required on an ad hoc basis if symptoms worsen. I have a fairly comprehensive article on this subject – click here.  It’s also possible that a new biopsy might be necessary (perhaps following a scan) and this may even lead to a new grading on the basis that the score might turn out be higher than the baseline grade.

markers

Misc Tests

NETs are a heterogeneous group of malignancies so I guess some people have additional tests alongside their main tumour markers and hormone levels.   I have the routine blood levels alongside my markers, that’s pretty standard I think.  I also get my thyroid levels checked due to a lesion currently under watch and wait.  Read about his here.  Due to surgery and malabsorption issues, I also get regular vitamin checks, in particular B12 and D.  Read here to see why this is important.  As someone who was initially diagnosed with ‘Carcinoid Syndrome’ alongside my NET, I normally get an annual Echocardiogram to check for Carcinoid Heart Disease.

Listen to your body

I also have a personal theory that patients are doing surveillance on a daily basis. For example, I actually maintain a diary briefly listing things such as sleeping patterns, what I’ve eaten, bathroom activity, weight, and some other stuff including particular comorbidities that might or might not be related (if not, then it’s also useful for any resulting GP/PCP appointment). That sounds like a lot of work but actually only takes me one minute each day. I’m really looking for patterns.  If I think there is a pattern or a connection, I take this data to any appointment or contact the NET Nurse for advice or even just a sounding board. I can’t beat up my medical team for not spotting something where my input would have been important.  I already learned that lesson prior to diagnosis.

Summary

A lot of people don’t like living in a surveillance society.  Me?  I’m perfectly happy about it – it will keep me alive longer.  And if ‘Big Brother’ is a NET specialist, even better!

Always ask what your follow-up regime will be.

Thanks for reading

You may also enjoy my article “10 Questions to ask your Doctor” – click here.

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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5 Comments

  1. Dale Davidson says:

    Hi, have been following your blog for about 2 years and find each one very informative and interesting. Thank you for widening my knowledge about Carcinoid/Net as until I was diagnosed I had not even heard of it!!! I have been told that I am “cured” after a MRL tumor of low grade well defined outcome – do you still reccommend a close watch for ever or is the 5 year watch list that I am on is enough? Thank you again.


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  2. edebock says:

    I have a post treatment scan after each Lutetium treatment which I presently have every 6 months. Half way between each of those, I have a CT scan. Knowing that my tumours will be looked at every 3 months really helps with my peace of mind. I like your daily self surveillance suggestion, though I’m concerned that I might become overly obsessed with my well being if I did that. Perhaps I should try it for awhile and see.


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    • Ronny Allan says:

      Good point about the obsessing. I guess some people might unintentionally do that. I don’t obsess about it – I think if it as a useful way of self advocating. Hope you’re doing OK

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      • edebock says:

        I’m doing very well, thank you! After 9 Lutetium treatments, one of my five tumours seems to have disappeared completely and the others are shrinking. Except for the first week or so after each treatment when I’m really tired, I feel fine and I’m able to lead a pretty normal life. Have a very Merry Christmas, Ronny! I appreciate all you do to increase NET cancer awareness.

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