Neuroendocrine Cancer – surveillance and follow up


surveillance

If I had a pound for every time I’ve said “make sure you get good surveillance and follow up”, 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.  There’s others including in USA, the NCCN also have a set (and no surprises that the different organisation guidelines can often differ due to the healthcare systems in place). For more detailed or the latest guidelines content, you may need a login or in one instance (ENETS) a membership subscription.

The type and frequency of surveillance will depend on a number of factors, including but not limited to; NET type, primary location, stage and grade.  Worth also noting that these are guidelines and physicians will often take many factors into account in deciding on the frequency and content of follow up surveillance.

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 3 months, 6 months, 12 months, 3 years and I’ve even read something which said “no specific follow-up strategy has been recommended” (e.g. ENETS “curative resection of an Appendiceal NET less than 1cm by simple appendectomy“).  Often a patient will need to advocate to get the right attention.  Knowing what the guidelines are for your situation is a good start.

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 she 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.  The Ga68 PET scan is becoming more available – click 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, especially if you have one or more of the NET Syndromes producing one or more of the offending hormones.  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 – they had removed that earlier this year from my surveillance but it’s now back as a precaution due to the discovery of some fibrosis growth in my retroperitoneal area.   You may also be monitored for ‘at risk’ or comorbidity checks such as the thyroid.

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 – this cancer can be SNEAKY.

Thanks for reading

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

Thanks for reading

Always thank your Nurse – sometimes they’re the only one between you and a hearse!

international nurses

I had minimal exposure to nurses throughout the first 55 years of my life.  I did spend a night in hospital when I was 16 having been knocked unconscious in the boxing ring (you should’ve seen the other guy). Bar the odd mandatory injection, I avoided both boxing and nurses for many years after that.

You may remember I discussed how my cancer was diagnosed following a fairly innocuous conversation at my GP’s Surgery in May 2010, see blog post Diagnosis – I’m no longer in control’.  That nurse was professional, thorough and she clearly went the extra mile for her patients.  She has my eternal thanks for sending me down a different path in the game of chance that is life.  I often wonder where I would be now had she not ordered the ‘just to be sure’ blood test that ended up being the trigger for my eventual diagnosis of metastatic Neuroendocrine Cancer.  Perhaps she was the thing between me and a hearse?

Following that episode, I have since met many Nurses (male and female) and my respect for them knows no bounds.  I spent around 35 nights in hospital over the period Jul 10 – Feb 12 and most of my memories involve something a nurse has done to help me.

It was a nurse that:

  • held my hand when I was in real pain and discomfort during a liver biopsy

  • met me on each hospital stay and put my mind at rest with their caring nature and big smiles

  • brought me my medicine when it was due 24 hours per day

  • carried out observations on me when they were due 24 hours per day

  • washed me when I was in no position to do anything for myself

  • got me out of bed when I was not able to do it myself

  • washed my feet and changed my hospital socks when it was still too sore to bend down after surgery

  • did a hundred other things I could list, some of them not very nice jobs

I still depend on them today!  Every 28 days, I rely on them to give me my anti-tumour treatment and my specialist Nurse is always on the end of a phone if I need to speak.  And I just love it when I see a specialist or a consultant and there is a Nurse also present.  It makes me feel safer, more comfortable and I’m likely to ask more questions. 

So – to all nurses out there, a big thanks from the bottom of my heart ♥  Not a hearse in sight!

 

Thanks for reading

Ronny

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