Neuroendocrine Cancer – surveillance and follow up

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Since 2010 I’ve had a lot of surveillance and testing. More than people can imagine. I can see from various comments on my public pages and posts within my private group, that some people get a lot more than me and I get more than others. It’s not true to say we all get the same, there are many factors including stage, grade, type of Neuroendocrine Neoplasm, healthcare system/guidelines, miscellaneous problems, therapy, and even age.

In the first year or two after diagnosis, I seemed to be in a continuous testing phase but that was mainly due to seeing so many different doctors for so many different issues. In reality, I was seeing and being assessed by my Oncologist around 3-month intervals, eventually moving to four. After that, I moved to 6 months but due to issues in 2013/2014, I reverted back to 3 months for a year. But for years after that dip, I’ve been on 6 monthly meetings with my specialist, after a plethora of blood tests, and a CT scan (normally). In 2019 after some years of stability (despite a scare in 2018), I agreed to move to 12 monthly scans (blood testing would continue at 6 months). I see this as a positive, a solid sign of stability with an added bonus of reducing my annual CT radiation exposure.

But I’m not being left alone

I have the luxury of having a NET Specialist Nurse on call and he is not only proactive in screening me for quality-of-life issues, but he is also very accessible. This year, I have the added bonus of an available and local NET Specialist Dietitian, an important subject for many NET Patients.  The Nurse who comes to my house every 28 days checks my vital signs. All of this is “surveillance” because all of these things can trigger further investigations if abnormal. 

NET Patients need surveillance and follow-up, but the intervals will be variable

If I had a £ for every time I’ve said to someone in a message or in a post “make sure you get good surveillance and follow up”, I’d have a lot of £s! 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 and appropriate 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 are others including in Europe, ESMO has a set, including in USA, the NCCN also has a really accessible and thorough set.  And no surprise that the 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 ones you find online will be older versions).

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 are 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 on localised and solitary tumours removed by surgery with curative intent which said “no specific follow-up strategy has been recommended/required” (e.g. ENETS and NCCN both state “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.

Turn Surveillance into a positive

Some people find surveillance stressful, and I get that.  But it is really a positive thing because not knowing what is going on inside you must be infinitely more stressful.  Read more here or click on the picture below:

Click on the picture to read more

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 its 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 opportunity. 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 to 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 this 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 Hedinger Syndrome (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.

Disclaimer

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 as they are not members of the private group or followers of my sites in any official capacity.  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.

Click on the picture to read my article "I may be stable but I still need surveillance and support"

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Ronny

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5 thoughts on “Neuroendocrine Cancer – surveillance and follow up

  • Dale Davidson

    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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  • 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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    • 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

      • 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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