Recently, I produced a blog post Stable is my new normal. In that post, I emphasised that it’s important to understand that ‘Stable‘ for many Neuroendocrine Cancer patients does not mean cured – nor does it mean any kind of remission, particularly in metastatic cases. It simply means the disease is “under control” with tests and scans showing the cancer hasn’t changed over time.
However, with incurable but treatable cancers such as metastatic Neuroendocrine Tumours (NETs), ‘Stable‘ is normally not the end of the matter, 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 tumour surveillance must continue in case of a recurrence.
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 ‘NET centred’ treatment, surveillance and professional support are all in place, things can gradually be adjusted to a new and hopefully tolerable ‘normal’. I also believe expectations need to be managed but improvements are still possible. In my own experience, however, this does not happen overnight. Patient must be willing to accept a new normal or status quo.
What is stable for me?
Looking at my medical documents, I was not really considered ‘stable’ until 2 years after diagnosis. The measure of that is in scans and markers. Nothing has grown since 2012 although I have a thyroid lesion being tracked on watch and wait. My key NET markers have been solidly in range since 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 currently. 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. Irregularities of concern to my ‘stability’ are checked, referred to other specialists if necessary and treated. I feel well, I look well, I think I’m on top of things.
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 – I can see this on one or two ‘corporate’ Facebook and Twitter sites. Specialist NET Nurses are an extremely valuable commodity – they do brilliant work and we probably need more!
OK … I may be stable but I still need support!
However ……. my 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. Whilst my GP is positioned to deal with most of my ‘irritants’, I still believe specialist assistance is required for many NET Cancer problems or any problem where there is potentially an overlap or risk of a connection. 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.
Although I still need constant surveillance, being stable allows me to focus on QoL and in particular trying to improve on my ‘normal’. Although I read a lot on forums, I don’t necessarily rely on them a lot for my own issues. On sporadic one-off forum questions (…..and not forgetting that hundreds of symptom questions are related to ‘the gut’), the discussions can end up with many different and confusing answers. Plus there are so many patients who are at varying stages of their disease, use different types of healthcare systems, have had different treatments and have different types of NET, it can end up as a tangled mess as people try to compare apples with pears.
I like to do my own research as I want to be in control of my own QoL. One of the most troublesome QoL issues for patients is diet and the digestive system generally (i.e. managing the gut). For many NET patients, particularly those who have had surgery and/or persisting syndrome, diet and nutrition is a huge challenge as it can very often mimic other problems which can present with a wide range of ‘syndrome like’ symptoms such as fatigue, weight issues and even anxiety. More somatostatin analogues and other drugs might just be the wrong response in certain scenarios. I feel there is a huge gap in the follow-up treatment for people who suffer this as a consequence of their cancer. For example, and to the best of my knowledge, there is only one dedicated and practicing Neuroendocrine specialist dietician in the whole of the UK (…..I’m willing to be corrected here). Some of you might be thinking that any dietician should be able to help? Although you would be correct to a certain extent, I personally do not believe this is the best or optimum solution. There are very specific issues with NET Cancer patients that are bespoke and complex to the point that conventional cancer diet practices may not fully apply. It’s not just about what you eat………..
NET Cancer patients need specialist dietary advice covering the whole spectrum from diet itself to the use of supplements where required, post-surgical advice, managing the long-term side effects of treatment, combatting and treating malabsorption and nutrient deficiencies caused by the complexities of their cancer or the consequences of their treatment. Personally, I think more resources and research in this area would be useful.
This gap is one of the reasons why I asked Tara Whyand (a dietician with specialist Neuroendocrine Cancer knowledge) to help me co-author a series of blogs to focus in on a few key areas. I didn’t want to say what someone should or should not do, I wanted to say why this is an area to watch. The ‘why‘ is important as it helps you in your efforts to distinguish the effects of a syndrome or a co-morbidity from the effects of your treatment (if applicable). I find this knowledge helps me to think ‘outside the box’ rather than just accepting ‘it’s the syndrome‘. I personally feel I’ve been able to harness this knowledge to improve my QoL.
Blog 1 – Vitamin and Mineral Challenges
Blog 2 – Malabsorption
Blog 3 – Gut Health
Blog 4 – Food for Thought
The following blogs may complement this nutrition series:
thanks for listening
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