Last month I produced a blog post "Stable is my new normal". It's important to emphasise that 'Stable' for me (and many others) does not mean cured - nor does it mean any kind of remission. It simply means the disease is "under control" with tests and scans showing the cancer hasn't changed over time.
With incurable cancers such as metastatic Neuroendocrine Tumours, 'Stable' is normally not the end of the matter, there is still a long road ahead and that road will not be straight or flat. The long road may be considered an advantage by some given that with certain cancers, incurable can mean terminal (in the conventional sense of the word). The disadvantage is that Quality of Life (QoL) can in many cases be compromised. However, with the right surveillance, treatment and professional support in place, things can be adjusted (importantly including the patient's expectations) to a new and tolerable "normal".
If you read the newspapers, listen to the news and look at patient forums, you can always find horror stories about how people with cancer have not had the correct support, with care disappearing almost completely after the initial treatment, leaving the patient feeling left out on a limb. Not nice to read, but I'd like to think these cases are in the minority. When I consider my own situation, I appear to have been fortunate with excellent care from diagnosis all the way through to my main procedures and operations. I do distinctly remember feeling isolated and out on a limb after leaving hospital in the winter of 2010 following my first major surgery. I had such fantastic care which made me feel safe and yet here I was in my own house without the fantastic doctors and nurses I had on tap for 19 days and nights. Even though I was glad to be home, I suspect this was a perfectly natural reaction for any patient who had gone through this sort of trauma. Fortunately family and friends were there for me at this important and transitional time.
Today, my ongoing monthly treatments are well organised, I'm in touch with my specialists and undergo several surveillance checks beforehand every 3-6 months. Irregularities of concern to my stability are checked, referred to other specialists if necessary and treated. In between consultations, I can call in for urgent help if need be.
All well and good. However, sometimes this still isn't enough to maximise long-term QoL levels. I still need more support!
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 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 still required for many NET Cancer problems or any problem where there is potentially an overlap or risk of a connection.
Patient forums can help for some but personally speaking, I'm put off by the range of (sometimes widely differing) opinions that are invariably offered. Don't get me wrong, I suspect many people value the advice they receive on forums. I tend to do my own research (some of which may be on forums) and come to my own conclusions before deciding whether to act on them.
I think the UK is very well serviced with district NET Centres across the country each with specialists in Neuroendocrine Cancer and most include a dedicated NET Nurse - some areas are better served than others. In my opinion, NET Nurses can prove invaluable in ongoing care scenarios. In fact, I was very pleased to see a NET Nurse attending my most recent MDT meeting. You can see the level of support available in the UK on the NET Patient Foundation's website. I'm fairly certain other countries have similar setups - I can also see this on forums etc. 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. NET Nurses are an extremely valuable commodity - they do brilliant work and we probably need more!
However............judging by the content of forums and questions asked at bi-annual NET Patient conferences, one of the most troublesome QoL issues for patients is diet and the digestive system generally (i.e. the gut). This is where I feel there is a gap, even in the UK. For example and to the best of my knowledge, there is only one Neuroendocrine specialist dietician in the whole of the UK (I'm willing to be corrected here). I suspect local NET Nurses are being fielded many questions on this subject and, I would predict, referring much of it to the NET dietician on a regular basis. Some of you might be thinking that any dietician should be able to help? Although you would be correct to a certain extent, I do not believe this is anywhere near 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. NET Cancer patients need specialist dietary advice covering the whole spectrum from diet itself to the use of supplements, post surgery advice, side effects of treatment, combatting and treating malabsorption and nutrient deficiencies caused by the complexities of their cancer or their treatment. Some research in this area would also be useful.
I intend to cover these issues in future blogs - there is far too much detail for a single post. However, please note I'm not a doctor, nurse or dietician but I do understand the issues from a patient perspective. Moreover, I want to write it as a patient. Therefore I will be seeking 'technical assurance' on my content before publishing. In the meantime I hope you will be a 'patient patient' whilst I construct the posts :-) If you know anyone who would benefit from this blog or my forthcoming blogs in this series, please invite them to like my Facebook page so they don't miss out (see below).
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Thanks for listening
Ronny
p.s. I suspect some of you will be asking why I didn't include emotional support here? That is another blog for another day. However, I have given it some thought - I touched on it in blog Living with Incurable Cancer.
