Cancer isn’t always a one-time event. It can be a chronic (ongoing) illness, much like diabetes or heart disease. Cancer can be closely watched and treated, but sometimes it never completely goes away. The cancer may be ‘controlled‘ with treatment, meaning it might seem to go away or stay the same, and it doesn’t grow or spread as long as you are getting appropriate treatment. Sometimes the treatment shrinks the cancer, but the cancer is still there – it doesn’t go away and stay away – it’s not cured. More people are living with cancer than ever before and the ratio is on the increase thanks to better treatments.
For the first 18 months following my diagnosis, I underwent a significant number of treatments and tests. As I continue living with my cancer, that tempo doesn’t seem to have gone away. Every 6 months (and sometimes in between too) I undergo a plethora of tests and appointments. Some tests are annual. I feel I’m stuck in this perpetual surveillance world – sometimes I’m not sure what to expect or what’s going to happen next! I suspect this is the case for many Neuroendocrine Cancer patients.
I saw a post on one of the forums last week – the question was “what does stable actually mean”. The answer may seem obvious but one reputable website defines it as follows “A doctor may use the term controlled if tests or scans show that the cancer is not changing over time. Another way of defining control would be calling the disease stable“. Worth noting that “not changing” can also mean ‘not decreasing’.
It’s 2 months until my next Multidisciplinary Team (MDT) and if I was a betting man, I would guess they will say “stable” having confirmed no remnant tumour growth and my blood and urine tests will be “unremarkable” (don’t you just love those medical terms!).
So is this normal? I guess it could be for me but I like to tie quality of life into my ‘normal’ definition. I also think that living with an incurable cancer is not so much about “getting back to normal” but rather what’s normal for me now (i.e. I can’t put back bits of my small intestine back in!). As I’m tying this into quality of life which is something I’m constantly trying to improve, I must therefore be constantly trying to improve my ‘normal’. I guess for me, normal isn’t really a static thing.
Being stable and finding a new normal doesn’t mean you don’t need support. The surveillance scans and tests are a given but the support isn’t always there in the quantity and quality you might like. I may be stable but I still need support and often this can only be acquired by being a proactive patient. I have a number of ongoing issue which might present bumps on the road ahead (at least the ones I can see) and these present a challenge to my normality.
- Thyroid lesion (ongoing). Although it has not grown since discovered. Watch and wait. Check out my Thyroid blog for the full story.
- I’m on long-term blood thinners (Clexane) due to the discovery of blood clots in one of my lungs following major surgery in 2010. To keep an eye on the risk of developing osteoporosis arising from long-term use of this drug, I have an annual DEXA scan which measures bone density. My last scan indicated a slight reduction (nothing drastic). I’m not getting any younger, so my bones are starting to ‘moan’ a little.
- I’m not syndromic but I do have some post surgical side effects. Anyone who’s had classic NET gastrointestinal or pancreatic surgery will know the issues. It’s a constant battle but I’ve made some improvements by understanding why these side effects occur and taking action to reduce their impact. For example, since my ‘turning point’ in 2014, I’ve managed to reduce bathroom visits by 300%, so things are pretty normal frequency wise. I continue to work on this. Small intestinal bacterial overgrowth (SIBO) is something I’d like to explore with my MDT, particularly as a big increase in my probiotics dose made a difference. Check out my Nutrition series of blogs.
- My fatigue levels are vastly improved since my 2014 turnaround and I put this down to my turnaround changes in the last two years including keeping active and reducing stress levels. I continue to work on this too.
A new normal can be found. They can be improved. However, they need to be guarded by being proactive and positive. And …. it’s not the same for everyone.
Thanks for listening.
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Earlier this week, I met some fellow cancer fighters and the conversation turned to what inspired us to ‘do what we do’. When it came to my turn, I was already prepared to regurgitate my usual ‘spiel’. As sometimes happens, a listener queried me with the words “Neuroendocrine – what’s that?“. Another focussed on ‘Neuro‘ enquiring whether my nervous system or my brain had somehow become cancerous. Deja vu – here we go again!
Two days later, I was speaking to one of my on-line friends who was having similar problems explaining this cancer to family and friends. Again ‘Neuro‘ was proving difficult with the assumption that it’s somehow related to the brain. Technically not far from the truth but context is really important given that most people look at cancer in anatomical terms.
I’ve struggled since 2010 to explain this disease in layperson terms. It’s actually one of the reasons for my ‘study’ and my blog. It’s getting easier, particularly when answering questions. However, if Neuroendocrine Cancer knowledge was an iceberg, I’d still be at the tip! I did write a post entitled Horrible Hormones which supports an explanation. You might like to read it – perhaps helpful to aid your overall understanding of this post.
The other difficult aspect of explaining Neuroendocrine Cancer is the extent of the Anatomy and Physiology of the Neuroendocrine system which appears in numerous parts of the body. I’ve written about this before at a time when I was fed up with newspaper reports and on-line articles implying that Neuroendocrine Cancer didn’t exist – e.g. by frequently describing Neuroendocrine Tumours of the Pancreas as Pancreatic Cancer and Neuroendocrine Tumours of the Lung as Lung Cancer. During some of my own verbal discussions, mention of the small intestine was frequently met with “so you have Bowel Cancer“. NO! Good time to refresh yourself with my blog post The Human Anatomy of NET Cancer. This thinking needs to be challenged at every opportunity including while explaining to family and friends.
I’ve therefore decided to attempt a short, generic but still sufficiently detailed explanation of ‘Neuroendocrine‘ in relation to my Cancer. I suspect by the end of this blog, it will not be as short as I had wished. I do like a challenge 🙂 Here goes:
The neuroendocrine system is made up of a network of cells that are distributed throughout the body. The word neuroendocrine refers to 2 qualities of these cells: they have a similar structure to nerve cells (neurons) and produce hormones like endocrine cells. Neuroendocrine cells release hormones into the bloodstream in response to chemical signals from other cells or messages from the nervous system. Basically hormones travel in the bloodstream and makes things happen in another part of the body.
These neuroendocrine cells are scattered throughout the body performing different roles based on location, e.g.
- Neuroendocrine cells in the digestive system regulate intestinal movements and the release of digestive enzymes
- Neuroendocrine cells in the respiratory system are believed to play a role in the developmental stages of the respiratory organs. They also regulate respiratory function.
- There are many others including some which control or can affect blood pressure, heart rate, blood glucose sugar levels and many other substances.
When Neuroendocrine tumours develop in these cells, they can not only then spread to other locations but they can also secrete excess amounts of hormones and substances which can cause an adverse effect on the body’s natural rhythm. A collection of these symptoms is known as a syndrome. There are several different syndromes depending on the location and type of Neuroendocrine Tumour.
The presence of the syndrome nearly always indicates the disease has metastasized (spread) and that the tumours are functional. Sometimes tumours are non-functional (i.e. they do not secrete excess hormones) – can be even more difficult to diagnose than their functional counterparts often leading to presentation at very advanced stages.
Most Neuroendocrine Tumours are slow-growing and therefore offer good prognosis if identified as early as possible and treated. Even for metastatic patients, the outlook is relatively good with the right treatment and surveillance. However, one of the biggest challenges for Neuroendocrine Tumour patients is the maintenance of a decent quality of life which can sometimes be impacted by the effects of their syndrome and/or the treatment.
I found it very difficult to write a short and generic explanation of the word ‘Neuroendocrine‘ in relation to cancer – no wonder I seem to spend 10 minutes verbally explaining to people and…… no wonder they sometimes look at me with glazed eyes 🙂 However, this is my offer. This is as brief as I can make it to provide understanding. I’ve cut out more than I’ve left behind and feel like I’m short-changing you! However, it needs to be basic and it needs to be short.
Explanations which comprise lists of complex and unpronounceable words each with their own constraints and variable meanings leads to chaos. I could have just referred to one of the excellent publications on the web but this isn’t really practical when in an impromptu conversation with wide-eyed listeners. That said, I believe the combination of this post and (if you see light-bulbs) the other 2 linked posts within, is a good way to answer the question if someone is willing to listen (and read a short reference). You may therefore need to follow-up the ‘verbal’ with the ‘written’.
To summarise, I intentionally made this explanation as generic as possible. Trying to explain every single type of Neuroendocrine Cancer will confuse and tire the best listener. If I was using this today, I would add my own additional comment about where my tumours were found and what treatment I’ve had – this I can do without a script! However, if you think this explanation is of use when verbally explaining Neuroendocrine in relation to your cancer, please feel free to share my blog post to aid understanding.
Neuroendocrine – what’s that? I didn’t have a clue …… until I was diagnosed with it!
p.p.s. the anatomy of Neuroendocrine Cancer is a key awareness message – so Lets keep raising our ‘sites’ !
Thanks for reading