Since 2010 I’ve had a lot of surveillance and testing. More than ordinary 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 I do and some get less. It’s not true to say we all get the same, there are many factors including stage, grade, type of Neuroendocrine Neoplasm, healthcare system, miscellaneous problems, therapy, even age.
I have metastatic small intestine NET. In the first year or two after diagnosis, I seemed to be in an almost 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 first two years, I moved to 6 months but due to issues in 2013/2014, I reverted back to 3 months for a year. But from then for 6 years, I was on 6 monthly meetings with my specialist, after a plethora of blood tests, a CT scan (normally). In 2019 after some years of stability (despite a scare in 2018), I agreed to move to 12 monthly scanning (blood testing would continue at 6 month). I see this as a positive, a solid sign of stability with an added bonus of halving 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. And since 2019, I have had the bonus of an available and local NET Specialist Dietitian, an important subject for many NET Patients.
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 have a set, 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 (something to remember when commenting on private group threads). 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 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 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. You can see a section below (Quality of Life checks).
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…..
Imaging (including endoscopy etc)
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 it“ – click here. The Ga68 PET/CT scan is becoming more available – click here.
Some might get regular endoscopy, (Gastric NETs, Rectal NETs, other GI tract areas including esophagus, pancreas, duodenum. Looking on a camera can be a really good way to assess growth or spread in certain localised scenarios. Read more here.
Scans and endoscopies can be used individually if they are known to support your particular case but often there needs to be a combination, for example, over the years a CT is not really seeing my liver tumours too well and I often need a Ga68 PET, this is a fairly new thing and I will update in July when I’ve been to London for this special scan. I wrote about these issues in a post entitled “Now you see them now you don’t“
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.
NET Type Specific 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. 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.
Quality of Life checks
Some of the miscellaneous surveillance checks I mentioned above are now being met. Due to my specific surgery and malabsorption issues, I insisted on regular vitamin checks, in particular B12 and D. Read here to see why this is important. In 2018, my NET Nurse instigated a mid-term check (in between specialist appointments) via a telephone conversation plus an ad hoc set of blood tests to monitor things such as the side effects of therapy. This could be different from patient to patient but in my case, it’s blood glucose/HbA1c, Vitamins ADEK, Vitamin B12, and lipids (cholesterol and triglycerides). All of that is fine to date, although triglycerides are elevated which is under investigation.
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.
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.
You may also enjoy my article “10 Questions to ask your Doctor” – click here.
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Thanks for reading.