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Neuroendocrine Cancer – no treats, just tricks


It’s not just scary, it’s deadly. Share and save a life

There’s a lot of scary diseases in this world and some of them are particularly spooky.  One such 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, but it’s also cunning, devious, misleading, double-crossing, and it likes nothing better than to play tricks on you.

It will sneak into your body without you even knowing anything about it.  It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas and a host of other places. It can be fiendishly small to avoid being seen.  Once it’s established in the primary location, it will try to break out via your blood and lymphatic system.  It wants to establish other bases in your mesentery, your liver, your lymph nodes, your bones and many other places. It can often be uncannily quiet, not showing any symptoms.

Sometimes it wants to have fun, so it 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.  You will go to your doctor, perhaps many times, to report what looks like routine/regular symptoms but it’s also really good at tricking your doctors. After several visits, 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 because it actually hasn’t finished its tricking yet.

One particular type of NET has a wicked trick up its sleeve.  This one will over-secrete a hormone called Serotonin which will cause fibrosis in your abdominal area, potentially causing obstructions and damage to major organs and blood vessels.  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 diagnosed.

It’s still not finished as 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. 

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

 

Thanks for reading

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

 

 

 


5 Comments

  1. 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 !

    Liked by 1 person

  2. Teresa Taylor says:

    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.

    Liked by 1 person

  3. 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.

    Liked by 1 person

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