Info about NET/Carcinoid Cancer

3 Posts | Page(s): 1 

Info about NET/Carcinoid Cancer

by Jenholm25 on Mon Jul 23, 2012 12:21 AM

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•Carcinoid tumors are NOT benign – patients ARE DYING because it’s not being taken seriously.

•Surgery does NOT mean "CURE" (regardless of where the primary is found!)!

•Symptoms show up prior to the tumors showing up on the scans, while still at the cellular level.

•Tumors spread once they are between 1-2 cm in size and spread like a buckshot.

•80% of patients with carcinoid syndrome will develop pancreatic insufficiency – leading to type 2 diabetes. 

•Many carcinoid cancer patients develop thyroid problems.

•Patients need to be followed up to 20 yrs for recurrences of carcinoid.

•Irritable Bowel Syndrome (IBS) and Crohn’s are the two most common misdiagnoses for patients with midgut Carcinoid.

•Over 11,000 new patients are diagnosed each year.

•As many as 125,000 Carcinoid/NET patients are living in the US today.

•The number of diagnoses is increasing by more than 5% annually.

•Over 90% of all Carcinoid/ NET patients are incorrectly diagnosed and treated for the wrong disease.

•Average time from initial onset of symptoms to proper diagnosis exceeds five years.

•Most prevalent Carcinoid / NET symptoms are diarrhea, constipation, abdominal pain, wheezing, flushing, heart palpitations, and blood pressure fluctuations.  This feels like living with the stomach flu 24/7.

•Carcinoid/NET cancer can often lead to thyroid and pancreatic problems.

•Carcinoid cancer can cause heart valve damage and electrical problems with the heart.

•There are strong correlations between autoimmune disorders and Carcinoid/NET.

•The patient’s entire endocrine system can be affected by Carcinoid/NET.

•Many Carcinoid Cancer patients have or get: vitamin D and B12 deficiencies, diabetes, thyroid problems, Multiple Myeloma,  hormone imbalances, electrolyte imbalances, migraines, insomnia

•Please recommend patients AGAINST having children.  Many Carcinoid Cancer patients who’ve had children with this cancer have mild to severe emotional, mental, and physical disabilities.  This usually includes severe digestive problems.

RE: Info about NET/Carcinoid Cancer

by CrystalRainbow on Sat Apr 26, 2014 02:12 PM

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Just read your post. Am a newbie here. Was Diagnosed with a well differentiated Carcinoin Tumor in my stomach about 2 years ago. They removed it using a Scope, and the pathologist said it was "benign". Could never figure that one out, if it is technically classified as a Cancer.

RE: Info about NET/Carcinoid Cancer

by SuzanneParker on Wed Aug 05, 2015 01:37 AM

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On Jul 23, 2012 12:21 AM Jenholm25 wrote:

•Carcinoid tumors are NOT benign – patients ARE DYING because it’s not being taken seriously.

•Surgery does NOT mean "CURE" (regardless of where the primary is found!)!

•Symptoms show up prior to the tumors showing up on the scans, while still at the cellular level.

•Tumors spread once they are between 1-2 cm in size and spread like a buckshot.

•80% of patients with carcinoid syndrome will develop pancreatic insufficiency – leading to type 2 diabetes. 

•Many carcinoid cancer patients develop thyroid problems.

•Patients need to be followed up to 20 yrs for recurrences of carcinoid.

•Irritable Bowel Syndrome (IBS) and Crohn’s are the two most common misdiagnoses for patients with midgut Carcinoid.

•Over 11,000 new patients are diagnosed each year.

•As many as 125,000 Carcinoid/NET patients are living in the US today.

•The number of diagnoses is increasing by more than 5% annually.

•Over 90% of all Carcinoid/ NET patients are incorrectly diagnosed and treated for the wrong disease.

•Average time from initial onset of symptoms to proper diagnosis exceeds five years.

•Most prevalent Carcinoid / NET symptoms are diarrhea, constipation, abdominal pain, wheezing, flushing, heart palpitations, and blood pressure fluctuations.  This feels like living with the stomach flu 24/7.

•Carcinoid/NET cancer can often lead to thyroid and pancreatic problems.

•Carcinoid cancer can cause heart valve damage and electrical problems with the heart.

•There are strong correlations between autoimmune disorders and Carcinoid/NET.

•The patient’s entire endocrine system can be affected by Carcinoid/NET.

•Many Carcinoid Cancer patients have or get: vitamin D and B12 deficiencies, diabetes, thyroid problems, Multiple Myeloma,  hormone imbalances, electrolyte imbalances, migraines, insomnia

•Please recommend patients AGAINST having children.  Many Carcinoid Cancer patients who’ve had children with this cancer have mild to severe emotional, mental, and physical disabilities.  This usually includes severe digestive problems.

The children have these issues if the parent (mom) has carcinoid cancer or syndrome?
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