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What You Need To Know About NET/Carcinoid Cancer

on July 23, 2012

• 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
•  This is a very controversial opinion between doctors and patients…  Whether or not a cancer patient should have children.  This is something that should be discussed between you and your doctor.

3 responses to “What You Need To Know About NET/Carcinoid Cancer

  1. Thanks for your extensive discussion of neuroendricine cancer. I was diagnosed last spring with no symptoms and was okay until this past weekend when everything presented–thought I was having a heart fribulation which I have had. But now am pretty sure its the cancer which is intensifying. Have presurgery appointment at Mayo and hope the surgery follows soon after. Thanks to all for this website and your sharing.

    Kerry McGrath

    • I hope everything is going well for you! Stay on top of it. I can’t tell you how many people I hear from 5 yrs post surgery who now all of the sudden have it spread all over their bodies. Surgery is not a cure. Make sure you are followed for 10-20 yrs. Please feel free to contact me any time!

  2. Isaias Liptow says:

    abdominal pain specially severe ones can be caused by other severe diseases like cancers..

    Our blog site

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