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Lower grade higher stage NETs – slow motion, chronic and indolent?

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Context

I write many blogs but one thing I always emphasise is the heterogenous nature of something called Neuroendocrine Neoplasms.  That is a catch all for both well differentiated Neuroendocrine Tumours (NET) and poorly differeniated Neuroendocrine Carcinomas (NEC).  The latter is almost always an aggressive cancer and less common than its less aggresive NET relative (when Small Cell Lung Cancer is not incuded in the math).  That said, the higher grades of NET can also be quite aggresive but very often still with a better outlook than NEC. 

Well differentiated NETs, particularly at the lower end of the scale tend have a good outlook, even at the higher stages incuding Stage IV.  Some at the lower end of stage and grade can even be removed with curative intent and patients can then be discharged (words from NET specialists and their guidelines).  Clearly there are always outliers in any scenario (at each end of the spectrum) but not many people would disgree with either of these statements.

Slow motion, chronic and indolent?

Some descriptions of the outlooks of lower grade well differentiated NETs have regularly been ampflified by use of terms in the context of those with the more advanced well differentiated NETs, such as “cancer in slow motion“, “chronic disease” and “indolent“. I quite like the quote from one of my older blogs “with low grade NETs, stage IV is not the red flag it is with more aggresive cancers” and this ties into the second article which I will go on to quote below.

I was half prompted to write this blog after seeing a story from Australia where the patient used the words “cancer in slow motion” and “chronic disease” and it was nice to hear this patient get on with their life. In fact she was diagnosed in the same year as myself (2010) with the same stage, same end of the grade spectrum and the same primary location. Read her story clicking here

The Australian experience above came days after I intercepted another article talking about cancer in general.  That one was entitled “Top cancer specialist explains why it’s time to rethink what stage 4 means” so it follows the gist of what I was hinting at above.  This article is about a cancer specialist who uses similar language as above including the statement “There was a time, says Evans, when being diagnosed with stage 4 cancer was something of a death sentence. “Yet people are now living longer and more comfortably than ever before, possibly for decades, with a chronic condition of cancer.”  Clearly Sir Chris Evans is talking much wider than just lower grade NETs because believe it or not, many other cancers are also slow growing and indolent!  He was also referring to major advances in research, increasing amounts of earlier diagnoses and treatment based on scientific advances and what we now know about cancer.  You can read this article by clicking here.

So it’s not just about how slow or indolent a cancer is, it’s also about how better it can be treated and managed. I have been conservative with my boundaries in this blog but I guess Sir Chris has most likely extended it to potentially more aggresive cancers. 

Thanks for reading. 

Disclaimer

I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. 

Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.   

Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.

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A cup of tea


I would also mention those who contributed to my “Tea Fund” which resides on PayPal.  You don’t need a PayPal account as you can select a card but don’t forget to select the number of units first (i.e. 1 = £4, 2 = £8, 3 = £12, and so on), plus further on, tick a button to NOT create a PayPal account if you don’t need one.  Clearly, if you have a PayPal account, the process is much simpler 

Through your generosity, I am able to keep my sites running and provide various services for you.  I have some ideas for 2023 but they are not detailed enough to make announcements yet. 

This screenshot is from every single post on my website and depending on which machine you are using, it will either be top right of the post or at the bottom (my posts are often long, so scroll down!)


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Lower grade higher stage NETs – slow motion, chronic and indolent?
By Ronny Allan

Ronny Allan is an award-winning international patient leader advocating for Neuroendocrine Cancer and cancer patients generally. Check out his Facebook pages and twitter accounts.

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