With incurable but treatable cancers such as metastatic Neuroendocrine Cancer, ‘Stable‘ is normally not the end of the matter, for many there is still a long road ahead and that road may not be straight or flat. The long road may be considered an advantage by some given that with very aggressive cancers, incurable can frequently mean terminal. The surveillance must continue in case of a recurrence.

It’s important to understand that ‘Stable‘ simply means the disease is “under control” with tests and scans showing the cancer hasn’t changed over time. One of the disadvantages of ‘incurable but treatable‘ is that Quality of Life (QoL) can in many cases be compromised due to the consequences of cancer and /or treatment. However, if specialist treatment, surveillance and support are all in place, things can gradually be adjusted to a new and hopefully tolerable ‘normal’. I also believe patient expectations need to be managed although improvements are still possible. In my own experience, however, this does not happen overnight. Patients must be willing to accept a new normal or a status quo on the basis that things are never likely to be the same again. Many patients with chronic conditions will have minor irritants and Neuroendocrine Cancer patients are no exception in this regard.

HOWEVER …….. The specialist view of ‘stable’ will mainly be looking at scan output plus tumour and hormone markers. The patient is likely to have a much wider view of ‘stable’ and it will include ‘quality of life’ markers.

So ….what is stable for me?

Looking at my medical documents, I wasn’t really considered ‘stable’ by specialists until 2 years after diagnosis. The measure of that is in scans and markers. Nothing has significantly grown since 2012 except for a thyroid lesion being tracked (biopsy negative for NETs). My key NET markers have been solidly in range since mid 2012. Today, my on-going monthly treatments are well organised, I’m in touch with my specialists and undergo several surveillance checks beforehand every 6 months and just changed to 12 months in 2020. I get regular/normal illnesses and those are logged in my diary to look for any clues or associations with anything else. In between consultations, I can call in for urgent help if need be and I have a direct line to my specialist NET Nurse . Irregularities of concern to my ‘stability’ are checked, referred to other specialists if necessary and treated. I feel well, I look well (but you should see my insides ….).

I like to think I’m on top of things. But I did have a minor panic in 2018 when it was noticed that some of my remnant retroperitoneal fibrosis looked pretty close to my right ureter which could turn into a major issue. That problem has gone for now but it’s firmly on the watch list. That said, it was spotted because of good surveillance. It was analysed because of expert assessment and excellent support. And it will go on being watched through good surveillance. I even suspect I might even be more interested in hearing about this after my scans than anything else at the moment. 

I think the UK (for example) is very well serviced with district NET Centres across the country each with specialists in Neuroendocrine Cancer and most include a dedicated NET Specialist Nurse – some areas are better served than others. In my opinion, NET Nurses can prove invaluable in on-going care scenarios. In fact, I was very pleased to see a NET Nurse attending and taking a greater role in my most recent MDT meetings. I’m fairly certain other countries have similar setups. Some countries may not be so fortunate and are struggling to get the right resources. Specialist NET Nurses are an extremely valuable commodity – they do brilliant work and we probably need more! The same could be said for NET Specialist Dietitians who are key to providing quality of life improvements. In fact, I was delighted to see this recommendation at ENETS 2018 in Barcelona. I’m also fortunate to have direct access to a NET specialist dietitian.  

OK … I may be stable (ish) but I still need support!

However, ……. my perceived stability does NOT mean I’m complacent. For minor issues, it’s always useful to talk to a medical professional, even on the telephone. I think of my GP (PCP) as a ‘virtual’ member of my Multi-Disciplinary Team (MDT) and I copy them into any important correspondence between myself and my Oncologist. They are normally copied in coming the other way (if not I make sure they are). This is starting to return dividends. My GP is positioned to deal with most of my ‘irritants’ (even NET patients get regular illnesses).  Being your own advocate is useful in these scenarios. Patient-doctor communication is vital, and I find it best to drive this myself. I’m lucky to have direct ‘as and when’ contact a specialist NET Nurse. All NET patients should have the same.