Neuroendocrine Cancer – is normally slow growing BUT …..


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I have a lot to be thankful for

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Not intended to come over as a pity party

No thanks for growing inside me for years before making your vague announcement

Sorry too late, I’m metastatic and around 50% of patients will be at diagnosis (so I’m not alone!). It’s very SNEAKY!

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No thanks for making a right mess inside my body!

I mean, I look really good, I look really well, but you should see my INSIDES

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No thanks for generating fibrosis throughout my mesentery and retroperitoneum!

I really didn’t know what to make of this issue at diagnosis, although I did know the aorta was pretty important!  Fortunately, I had a surgeon who had operated on many NET patients and has seen this issue before.  After my first surgery, he described it as a “dense fibrotic retroperitoneal reaction encircling his aorta and cava (inferior vena cava (IVC))”. My surgeon was known for difficult and extreme surgery, so as part of the removal of my primary, he also spent 3 hours dissecting out the retroperitoneal fibrosis surrounding these important blood vessels and managed 270-degree clearance. The remnant still shows on CT scans. Some of the removed tissue was tested and found to be benign, showing only florid inflammation and fibrosis (thankfully).  That said, the abstract papers above have led me to believe that my retroperitoneal fibrosis is clinically significant.  In fact, in 2018, I spent 3 months worrying about some of it growing into the reach of important vessels (still monitored). 

fibrosis an unsolved mystery
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No thanks for screwing up some of my hormones

There are many hormones involved with Neuroendocrine Cancer which is unique in that different types can result in elevated levels of different hormones, often more than one is involved.  Serotonin has caused fibrosis in my retroperitoneal area and is currently threatening important vessels. I don’t really need that right now!

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No thanks for the ongoing symptoms and side effects

I was showing symptoms of a Neuroendocrine Cancer syndrome known as Carcinoid Syndrome (currently) such as flushing and diarrhea and fatigue was probably there too, but these were thought to be something else or ignored (by me).  I don’t suffer too much nowadays other than side effects of the disease or the treatment I’ve had or received.  However, I know from speaking to many patients that the effects of the various syndromes associated with Neuroendocrine Cancer can be pretty debilitating and oppressive to quality of life.

These syndromes can be so strange and so weird, they can be very difficult for patients, nurses, and doctors to treat. They can be a real ‘witch’s brew’.

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Surveillance and treatment for life SUCKS!

But I need constant surveillance, it’ll keep me alive.

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No thanks for the weight loss

As if I needed it.  That said, I learned to live with that and am now my perfect weight for my age and height. However, for some weight loss presents a risk. 

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No thanks for the hypothyroidism

Another pill for life. I have a left-sided thyroid lesion and my treatment also messes with my hormone levels.  All NET patients need to keep an eye on this issue

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No thanks for increasing my diabetes risk

No thanks for pushing me into pre-diabetes (once so far).  Most likely due to treatment.

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No thanks for making me retire early

I loved my job but not if it was going to kill me. I made my own decision based on how I could survive in a financial sense. Made easier as I was only 6/7 years from retirement, but I guess I’m one of the lucky ones despite the fact I took a big hit on the income going into my bank account.

The truth is that many people still need to work whilst struggling with paying bills in addition to the side effects of cancer and its treatment. Getting some form of financial assistance from the government is not a done deal.

Neuroendocrine Cancer is a very expensive disease to treat.

This is fast becoming a big issue regardless of country and regardless of the healthcare system in place. However, in privately funded healthcare, it can be exacerbated by the level of insurance coverage. Read more about financial toxicity for cancer patients which is a growing problem worldwide.

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……….. and no thanks to anyone who says it’s a “good cancer

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Sometimes it isn’t slow-growing, particularly for high-grade cases.  I will continue to advocate for those types too:

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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 as they are not members of the private group or followers of my sites in any official capacity.  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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Ronny

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10 thoughts on “Neuroendocrine Cancer – is normally slow growing BUT …..

  • Gayle Hughes

    How do you cope with the diarrhea? It is so life changing, and I don’t know from one day to the next if I can leave the house. C’mon, isn’t having this enough, without the diarrhea?

    • Michelle

      Hello Gayle
      I have the same problem. I do find milk and cheese are the main triggers. But it’s embarrassing and stops you having a normal life.
      If I know I’m going anywhere I don’t have dairy and take a clean set of clothes with me. I also have a card which says I have Carcinoid syndrome so shops know I have a problem and they will let you use their toilets.
      As for medications I use to take anti diarrhoea tablets but had to stop as I got addicted to them and ts caused very bad constipation.
      Take care

      Michelle

  • Not always slow growing.. my partners Pancreatic primary NET with mets to liver is now unusually fast growing- 90% proliferation rate… and this after very good results from PRRT in 2017 and less good results this year. He was diagnosed 2 years ago at 48 yers old. We always knew it was incureable but now it is late stage terminal. Stay vigilant!

  • Bethany

    Nice! And amen to the financial comments. Do I work hard like other people, or do I work less so I can qualify for assistance? And then I feel like I’m not reaching my full potential when I’m on assistance!! And feel like other people perceive me as a sloth or loath, not that their opions really matter. But ya know what I mean.
    Enjoyable read overall!

  • And to add to the list there are some NET cancers that are caused by a DNA mutation such as the SDHx’s which means fathers, mothers, daughters, sons, grandchildren can all be at risk . . . And in the SDHB Deficient case there are no meds/chemos/TKIs only surgery until one day your surgeon says to you, I can’t operate on you anymore (two weeks ago) and you have three new tumors! But I also know there are pieces of my cancer/tumors in my blood thus any nice field with the right about of blood supply they’ll take up and grow and multiply. And quality of life . . . diarrhea once a day and forget about eating at a restaurant .. . That could put me in bed for three days . .. Did I think this is what my 50s-60s would look like? No. But then my father died at 45 from metastic bone NETs so I’ve had 15 years he didn’t.

  • So true, Ronny! We may look good on the outside, but inside is a different story! Since my NET diagnosis, I’ve been diagnosed with high blood pressure, osteopenia, pre-diabetes, and most recently hypothyroidism. The number of daily pills for life keeps growing! Thankfully, I was already retired at diagnosis and I continue to feel well. I’m also blessed to live in Canada where the financial burden is minor compared to what it might be in many other places. I’m going for my 11th PRRT treatment on Monday followed by scans the following morning. Hopefully everything is still stable.

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