Most people have perceptions of cancer in their heads, fairly fixed perceptions too. They think about all the stuff they see daily on TV, in the main press, and people they know. The big cancers set the scene.
Most doctors know about the big cancers. They also know how to treat them, many of them have a fairly fixed regime of surgery/chemotherapy/radiotherapy. Many survivors will have side effects of their treatments, e.g.perhaps temporarily losing their hair. More people are now surviving these cancers and many will be declared disease-free or placed into some sort of remission status (no evidence of disease is a common term I see).
Most NETs are not like that! Whilst it has a reputation for being a generally slow-growing type of tumour at the lower grades (but very sneaky though!), offers a good outlook/prognosis for many, has many different types of treatment modalities, it can frequently present at an advanced stage and become incurable; and/or offer some quality of life challenges. For example:
- Not many doctors know a lot about it.
- Many patients will have gone through extended diagnostic periods, perhaps months, years in extreme cases. In many cases it can be ‘silent‘.
- Only doctors who know a lot about it, really know how to quickly diagnose it. Only they know how to properly treat it. It’s a very individual disease, there are many factors involved.
- Another key difference with NET Cancer is that many people will have an associated ‘syndrome‘ and this might have been with them for some time before diagnosis. The symptoms of these syndromes can sometimes be rather debilitating, even after treatment.
- Many people will never be disease free nor will be they given a status of full remission. Their surveillance (scans etc) could continue indefinitely.
- Many people could be given treatment indefinitely, in particular, Somatostatin Analogues.
- Many people will live with the consequences of this cancer for a long time and this plays on their mind as well as the effect on their body.
There’s a lot of talk about something called ‘unmet needs’ and quite right too. However, there’s not appear to be enough action to deliver those unmet needs in our community. This is a highly prevalent cancer and many people live a long time with the consequences of the cancer.
Before you receive treatment, always ask what the side effects might be, how long they might last and what support you will get to treat or lessen them. Don’t be afraid to ask, you deserve to be told.
p.s. I look well but you should see my insides!
Neuroendocrine is not your average cancer but it can be pretty mean. That might explain why there are so many hardened NET patients out there!
Thanks for reading
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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!
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— Ronny Allan (@RonnyAllan1) March 3, 2016
I concur with grantsview message as your blogs are so very helpful and whilst in another blog you said we could get knocked over or die from something other than NETS some of us would like to know if NETS gets us in the end, is it a slow process, do our organs just shutdown?. Sorry to be perhaps negative but I am one of those who needs to plan Ronny
I don’t know Gaynor, I’m not a Doctor. I think the best thing is to have a private conversation with your NET specialist. I’m not a big fan of publicising these things as certain people don’t really want to think about it!
I prefer this https://ronnyallan.com/2016/06/09/im-too-busy-living/
thanks, that comment means a lot
Another well written, factual, educational summary ! I appreciate all your articles soooooo much ! You manage to bring to these pages what living with NEC and NETS is really about. I especially liked the notation of “plays on your mind “.
In my case, I strive even harder to find happiness and share happiness whenever and wherever I can. A good laugh can go a very long way towards mind management and those smiley little endorphin’s running around fighting the constant “unknown”.
And then there is the financial challenges that generally force you into a different current and future lifestyle than you most likely thought you were heading for. Its doable, now say out loud with me…. its doable. Now your wearing the armor necessary to steer your ship and head into the challenges with POSITIVE thinking 🙂
Keep it coming Ronny, we all ( every nec/net warrior ) love you for your unselfish time given to share with all of us !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!