Let’s talk about living with NETs

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Graphic courtesy of Ellie McDowell

There’s a frequently asked question on certain forums along the lines of how will I die of my Neuroendocrine Cancer?. Personally, I find it slightly unsettling, although I can understand why certain people might ask. I accept it as a question but I believe there are times and places for it and that a public forum is not the place to have it. The vast majority of people do not go to a forum to find out how they might die.  I can see a list of search terms for hits on my blog site (I don’t know who searched just what was searched). Would you believe this also appears from time to time?  I just hope they found this post!

I don’t tend to dabble in death – it’s just quite difficult to talk about it in a blog which is part designed to be positive and offer hope. So why am I talking about death inside this positive blog? Well, apart from thinking the thread mentioned above might scare readers who are already frightened by their diagnosis, perhaps quite recent, and do not want the answer to this question, I also think it might be perceived as a bit ‘glass half empty’. Both of these things are not good, thus why I believe the question should be between the person wanting to know and a specialist.

I also believe the “how will I die of Neuroendocrine Cancer” question is a really big assumption about the cause of death. Why? There’s an increasing chance a person with cancer today will die of something else. For example, in UK today, more than one in three (35%) of those people who die having had a cancer diagnosis will now die from other causes. This is up from one in five (21%) 20 years ago. By 2020 this will improve further to almost four in 10 people (38%). This means the number of people who get cancer but die from another cause has doubled over the past 20 years. The cancer story is changing and a quick bit of research confirms it’s changing on a worldwide basis.

On a similar subject, for those looking online for NETs prognostic data, I offer the following advice:

  1. Be careful surfing the internet, some sites have NETs prognostic data from the ark.
  2. Even if you find the very latest data, interpretation is difficult due to the heterogeneity of NETs, different stages and grades, comorbidities, age and no doubt many other factors. Please also note the ‘very latest’ data is probably a few years old.
  3. It’s a difficult question even for a specialist.
  4. I’ve lost count of the number of people who have told their story about being told a period of time from their specialist (including use of the word ‘terminal’) and they are still here a significant period after, in some cases 10 x what their specialist said.
  5. AND DEFINITELY Check out the comments on this Facebook post – here (over 400 people like this post so far – so press that button!)
  6. Learn how to conquer your fear – click here

Here’s a much better question people should be asking ……How do I live with NETs?”

Fear won’t stop you dying but it might just stop you living

Thanks for reading

Ronny – diagnosed 2010 and still a newbie

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Surgery – the gift that keeps on giving

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As we approach NET Cancer Day, my thoughts return to 9 Nov 2010. I had been diagnosed with metastatic Neuroendocrine Cancer a few months before and told it was incurable. However, with ‘debulking’ surgery, my Oncologist said my prognosis could be significantly improved. I now know from my own research that Neuroendocrine Tumours are one of a small number of cancers for which surgical debulking confers some survival advantage.  Another term used at the time was ‘cytoreductive’ surgery which means ‘to control symptoms and improve survival by removing or destroying disseminated tumour metastases’.  Less neuroendocrine tumours should result in lower secretions of specific hormones which in turn should decrease the effects of Carcinoid Syndrome from which I was suffering at presentation.  I’m still alive and kicking and don’t feel too bad at all!

The 9 hour operation was planned to debulk what was described as “extensive intra-abdominal neuroendocrine disease” and was first of a number of visits to an operating theatre.  The surgeon removed 3 feet of small intestine at the terminal ilium plus a right hemicolectomy, a mesenteric root dissection taking out the nodes on the superior mesenteric artery and a mesenteric vein reconstruction.  With the assistance of a vascular surgeon, my NET surgeon also dissected out a dense fibrotic retro-peritoneal reaction which had encircled my aorta and cava (almost occluding the latter).  This was a risky procedure but 270º clearance was achieved. Although it was known I also had liver metastases and some distant ‘hotspots’, those were to be tackled at a later stage.

I left the hospital some 19 days later and was delicate for some weeks after that.  I don’t recall what the plans were for Christmas Day that year but everything was changed so that it could be hosted at home organised by my ‘right-hand’ woman – Chris.  It was a good plan, as I just wouldn’t have been able to go elsewhere and it was the best gift I could hope for that year. My 3 grandsons  (I have 4 now !) were under strict orders not to jump on me – I had a 12 inch north to south wound still healing! However, I suspect the youngest who was not yet 2 years old at the time, didn’t really understand 🙂  I do have priceless grandchildren!

Not long after the present exchanging and the meal, I was so exhausted that I laid down and fell asleep immediately as a hint that I should be left alone for a bit!   I thoroughly enjoyed the day and it functioned as a medicine along with the many others I was taking at the time. The whole day reminded me that I have a lot to live for, so I’m thankful for the surgery.  

 

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

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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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