NETs/Carcinoid Awareness Day! Just Some Facts…

Today November 10 is NETs/Carcinoid Awareness Day. My friend Jennifer started to post some facts about the disease on Facebook & I added a few. Then I decided to do a blog post. We live with on a daily basis. It’s not a pretty disease much of it still misunderstood by the medical community. Please take some time & read a little about this disease, so that it will be better understood. This is my part in raising awareness.

#1: This cancer can affect multiple organs in the body including the pancreas, heart, liver, intestines, lungs, & kidneys. It can cause people to gain weight, lose weight, cognitive impairment, memory loss, diabetes, heart disease, small bowel obstructions, and more. Everyday stress & many foods cause symptoms to act up.

#2: Most prevalent Carcinoid / NET symptoms are diarrhea, constipation, abdominal pain, nausea, vomiting, ulcers, wheezing, flushing, heart palpitations, sinus tachycardia, bradycardia, and blood pressure fluctuations & some cognitive difficulties.

#3: Over 90% of all Carcinoid/NETs are incorrectly diagnosed & treated for the wrong disease (IBS & Cohn’s Disease are the most common). From initial onset of symptoms the average time to proper diagnosis exceeds five years. 
Took doctors 5 years to diagnose me.

#4: With Carcinoid/NET cancer… This cancer often does not respond to traditional chemo treatments and does not go into remission. If caught early (usually accidently), it can be cured. If not caught until advanced stages, the patient will never be cancer-free. Tumors will continue to pop up.

#5: More than 11,000 new cases of Carcinoid/NETs are diagnosed each year, which now means that NETs cancers are twice as common as pancreatic cancer. 
Most physicians are often not aware of current diagnostic & treatment options.

#6: A neuroendocrine tumor (NET) begins in the hormone-producing cells of the body’s neuroendocrine system, which is made up of cells that are a cross between traditional endocrine cells (or hormone-producing cells) and nerve cells.

#7: 5 year survival rate for people with carcinoid syndrome is 50%. Mortality rate for those with carcinoid heart disease is 1 to 3 years.

#8: I cannot shop on Black Fridays. Shopping in large crowds quickly causes carcinoid symptoms. I get overheated very fast; feel faint, sick to my stomach, dizzy, and my heart races and pounds really hard in my chest. Followed by many hours of intestinal problems. It sounds similar to an anxiety attack, but it’s not.


2 responses to “NETs/Carcinoid Awareness Day! Just Some Facts…

  1. This is very detailed information. Thank you for sharing. I wish there was a cure. I pray for you to beat all the statistics and live a long, strong life. And I admire your attitude in the face of it all because, as I’ve read you for this time we’ve “known” each other, I can see nothing but humor, strength and love in your heart. You are a remarkable woman. I want us to sit on a porch someday in our rockers with our granny glasses and reminisce about the old days – 40 years from now – ok? 🙂 xoxo