perspectives on the importance of raising awareness about NETs as well as the challenges a patient faces, and how the World NET Awareness Day campaign may benefit patients

1. It Takes Guts to be a Neuroendocrine Patient perspectives on the importance of raising awareness about NETs as well as the challenges a patient faces, and how the World NET Awareness Day campaign may benefit patients

3. neuroendocrine tumors (NETs) the physiology

9. NET Patient Advocacy the community

14. patient journey the patients

15. Years of Misdiagnosis “ I had about every conceivable ultrasound, scope and lab test for a period of almost 5 years after I started to have intermittent, extemely painful abdominal spasms.The pains mimicked gall bladder pain,except that my gall bladdder had already been removed. I even had an ERCP with no improvement. In retrospect, the episodes were probably bowel obstruction or kinking caused by the many carcinoids and affected lymph nodes found in my terminal ileum during exploratory surgery.” - Richard in Minnesota “ I was misdiagnosed with menopause for about seven years ...I was flushing during that time. Towards the end of that time, I started to have vague abdominal pain. I thought it was my gallbladder, as did my gastroenterolgist. A sono showed what they thought was 30-40 hemangiomas in my liver..the mri showed them also to be hemangiomas, except for two which were questionalbe...the ct and 5hiaa showed that it was, indeed, carcinoid.” – Janet in Long Island

16. Years of Misdiagnosis “ For almost five years , I was diagnosed with IBS, gall bladder problems and everything else. I went into the emergency room hurting in my upper stomach area and they were looking at the gall bladder, which at that time was ok, but on the x-ray in the upper part, they saw something in my lower lungs, they then took an x-ray of the lungs and saw what they thought was carcinoid in my lungs. I had a biopsy the next day and it was confirmed that it was carcinoid cancer in my lungs. That was in 2003.” – Gloria in San Marcos (Texas) “ I was misdiagnosed, gastric acid, in stomach, flushing said to be panic attacks. diahrea said to be from lack of gall bladder. Liver mets id as hemangeomas in 2000, 2005 after bowel resection id as carcinoid mets [ 5 years ].” – Jackie in Northern Ontario “ I am mid gut carcinoid. For years it was assumed I was having diverticuites.” – Phil in Michigan

19. Journeys - Medical Tourism “ I travelled to Mayo Clinic, embolizations done in Manila, chemo in Singapore all in 2005. Tumors stable for the past 4+ years - under Sandostatin maintenance.” - Clarence in Singapore “ I went to Rotterdam for LU 177 and all my tumors disappeared. I visited 3 doctors Dr Kelsen in NY, Vinik Norfok VA and Dr Donhower in Baltimore. For surgery Dr Cameron and Choti in Baltimore, MD. Got Gallium PET in Chile and I discovered my bone cancer. Now my cancer is in remission.” – Gaston in Maryland “ I travel to California every 4 months to see Dr Wolin. Have recently been asked to join a clinical trail there and am in process of trying to make a decision. There is a lot of "what if's". Would pretty much go anywhere I needed to go to get the care I need but am fortunate Dr Wolin is so close.” – Nancy in Arizona

20. How Far Will You Go? “ Left Michigan for Mayo for surgery, went to Norfolk conference in Virginia, went to Iowa to get referral to Basil, made 3 trips to Basil for Lu 177, now going to Iowa every 6 months and local oncologist gives Sando every 3 weeks.” - Sally in Michigan “ I have consulted on a regular basis with Dr. Warner in New York and now I consult with Dr. O'Dorisio in Iowa at least four times a year (Iowa is an easier trip from Michigan, I still love Dr. Warner). My local oncologist and Dr. O'Dorisio are part of what I call my carcinoid team. I have also done treatments with Dr. Riad Salem at Northwestern in Chicago and traveled to Basel Switzerland for two Y-90 DOTATOC Treatments. I have done other treatments and surgery, I have left town for most of them.” – Nancy in Portage (Michigan)

22. concerns patients have the issues

29. World NET Awareness Day the campaign

34. [email_address] Write me for further information about NET patient advocacy.