Neuroendocrine Cancer – normally slow but always sneaky

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There’s a lot of scary diseases in this world but some of them are particularly spooky.  One such spooky disease is the lesser known type of cancer that infiltrated my body – Neuroendocrine Cancer (aka Neuroendocrine Tumors or NET for short).  Not only is it scary and spooky, but it’s also cunning, devious, misleading, double-crossing, and it likes nothing better than to play tricks on you.

It will grow in your body without you knowing.  It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum and a host of other places. It can be fiendishly small to avoid being seen.  Once it’s established in the primary location (….or locations), it will try to break out via your blood and lymphatic systems.  It wants to establish other bases in your mesentery, your liver, your lymph nodes, your bones and any other place it can get to.

It can often be uncannily quiet, not showing any symptoms. However, sometimes it wants to have fun and  will often over-secrete certain hormones to add or introduce symptoms which mimic many other diseases such as IBS, asthma, abdominal upset, diarrhea, flushing. These are just more tricks up its sleeve.  You will go to your doctor, perhaps many times, to report what looks like routine/regular symptoms. Unfortunately, it’s also really good at tricking your doctors. After several visits and despite your concerns, your doctors could become so frustrated that nothing serious is obvious, they might even start to think it’s all in your head. This is exactly what Neuroendocrine Cancer wants, it’s just getting started.

One particular type of NET has a wicked trick up its sleeve.  This one will over-secrete a hormone called Serotonin which can often cause fibrosis in your abdominal area, potentially causing obstructions and damage to major organs and blood vessels.  It’s not finished though, it will also try to introduce fibrosis to the right side of your heart causing more life threatening issues. In addition to common symptoms of flushing, this type and others will also make you feel weak, fatigued, pain, agitated, anxious, dizzy, nauseous, jaundiced, acid reflux, skin irritation, anemic, lose weight and give you heart palpitations. Its main trick is to prevent you from being correctly diagnosed and it’s pretty good at it.

However, it has a ‘finale’ trick.  Neuroendocrine Cancer actually wants to kill you, and if it’s left to plough its relentless path throughout your body, that’s exactly what it will do, slowly but surely. 

It’s not just slow and scary, it can also be deadly. Spread the word and help save a life.

Fortunately, there’s a lot of awareness now and it’s helping. But we need so much more.

If you are suspicious you have Neuroendocrine Cancer but not yet formally diagnosed, you may appreciate this article.

Thanks for reading

Ronny

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Author: Ronny Allan

Facebook: https://m.facebook.com/NETCancerBlog and https://m.facebook.com/RonnyAllanBlog twitter: @ronnyallan1 twitter: @netcancerblog

16 thoughts on “Neuroendocrine Cancer – normally slow but always sneaky”

  1. Truth and well written. Pretty much explains it all without sounding morbid.You hit the nail on the head. I have NETS websites (treatment and organisations that I read down to three now and you are included. So much info out there and can be overwhelming but I really like reading your site/blogs (from Australia). David

    1. It is getting better, just taking a long time to show through. The latest and biggest batch of statistics confirms more people than ever are being diagnosed at an earlier stage.

  2. Insulinoma here. And even more rare, strictly reactive insulinoma. Usually benign. But my primary is actually found in a secondary location. Portacaval lymph nodes. Means possible Mets. Meaning malignancy. Meaning it could be deadly. 8 scans missed it. Finally a 9th saw it. A gallium 68 dotatate pet scan. But being located on an enlarged portal vein makes it very risky even to biopsy. And since I am managing my crazy hyperinsulinemia quite well, they aren’t in any rush to fix me.

  3. Last Weds, in Omaha, my husband received his first dose of Lutathera, LU 177, the radioactive isotope for treatment of PNET. It will not be available commercially until 2018,but he received a “ compassionate dose” from Italy. First time given in Nebraska!
    We feel blessed that his newly diagnosed tumor met all the criteria for treatment with this amazing drug.
    Expect him out on Halloween with an eerie green glow !

  4. I’m praying for a friendship of mine who fights this cancer. I am fighting multiple myeloma. Another lesser known cancer. Praying they find a cure for NET soon.

  5. It is also tricky in the fact that if found your surgeon will call it benign . . . And you go back to your life yelling “I don’t have cancer” . .. only years later to be found in more locations . . . My dad’s first tumor was found the year I was born . .. His doctor at the time thought it might have been because he’d had a burst appendix (and maybe that is true) . .. But it was a Chemodectoma, a tumor on his aortic . . . Called “benign” so when 10 years later he had mets in his bones, in his ribs, in his hips, in his spine . .. It was not treatable. He died when I was 16 years old. I have his gene mutation SDHB but I haven’t gotten NETs . .. yet . . Mine have disguised themselves as GIST tumors and I was also told “benign” . .. BUT I KNEW to not believe them. I could grow a NET any day .. . Or my body could stick it GISTs (I’ve six current mets) . . . My bottom line is I lost a dad to misdiagnosis . .. I saved myself from the same fate .. . Patients need to read their own PATH reports and doctor’s and surgeon’s notes and ask the researchers question after question. I was again told today by a researcher of SDHB that surgery is my best choice . . . My own oncologist thinks his “chemo” will work . .. And the “phase trial doctors” think their chemo will work . . . Frankly I’ll name my own poison after my next surgery.

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