This section provides more information for those who have been newly diagnosed with carcinoid cancer or related neuroendocrine tumors. All the new information about your disease, tests, treatment options, new medical terms and insurance issues may seem overwhelming. We hope that the information presented here will be useful and help you deal better with the new world that you are entering. Remember to use the medical glossary often when faced with all the new medical terms that you will encounter.
If you need latest publication on Carcinoid Tumors, please search in the PubMed. Type in " carcinoid neuroendocrine tumors" in search window.
Living With Carcinoid Notes from 3rd Annual Patient Meeting
in Birmingham, UK
March 20, 2005
Dr. Martyn Caplin gave an in depth presentation of all aspects of carcinoid/NET tumors; from diagnosis to treatment options. His presentation was followed by a Q&A session.
These notes may be very helpful for newly diagnosed patients who need a comprehensive easily understandable up to date overview of carcinoid and related neuroendocrine tumor issues.
Nissen, Nicholas N.; Kim, Amanda S.; Yu, Run; Wolin, Edward M.; Friedman, Marc L.; Lo, Simon K.; Wachsman, Ashley M.; Colquhoun, Steven D.
The American Surgeon, Volume 75, Number 10, October 2009, pp. 1025-1029(5)
ABSTRACT: Pancreatic neuroendocrine tumors (pNETs) are an uncommon pancreatic neoplasm. We reviewed the presentation, management, and outcome of patients with pNETs treated at a single center by a multidisciplinary approach between 2004 and 2008. Over this time period, 154 patients with carcinoid and neuroendocrine tumors were treated, which included 46 patients (30% of total) with pNETs. The most common presentations included abdominal pain (20 of 46 [43%]), systemic symptoms such as hypoglycemia (15 of 46 [33%]), and incidental mass (7 of 46 [15%]). Fourteen patients had functional tumors. At the time of diagnosis, 22 patients (48%) presented without metastases and 24 (52%) had metastatic disease. Median follow up for the entire group was 42 months. All patients with nonmetastatic pNET underwent pancreatic resection with 95 per cent postoperative survival. Overall survival in this group at 3 years was 86 per cent and disease-free survival was 81 per cent. In patients presenting with metastatic pNET, multiple treatment modalities were used, including liver resection or ablation (n = 15), hepatic chemoembolization (n = 17), pancreatic resection (n = 12), and systemic treatments (n = 7). Three-year survival was 70 per cent. Pancreatic resection results in greater than 80 per cent 3-year survival in nonmetastatic pNET. In patients presenting with metastatic pNET, excellent survival rates are also achievable using a multidisciplinary multimodal approach.
PMID: 19886158 [Pubmed – as supplied by publisher]
MEN 1 (Information by NIH)
The Endocrine and Metabolic Diseases Information Service is a service of the National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health.
Multiple endocrine neoplasia type 1 (MEN1) is an inherited disorder that affects the endocrine glands. It is sometimes called multiple endocrine adenomatosis or Wermer's syndrome, after one of the first doctors to recognize it. MEN1 is quite rare, occurring in about 3 to 20 persons out of 100,000. It affects both sexes equally and shows no geographical, racial, or ethnic preferences.
Comprehensive information can be found on the following website http://tinyurl.com/2yokt4
Checklist
A very useful guide for newly diagnosed patients to help them organize their medical information
Insurance Issues
Helpful guide to deal with insurance company issues
Does your doctor know how to diagnose and treat carcinoid/NETs?
IF NOT --then share this information with your doctor
EDUCATE YOUR DOCTOR
ENCOURAGE HIM/HER TO JOIN
NANETS ABOUT NANETS : NANETS (North American NeuroEndocrine Tumor Society) was established in September 2006. The purpose of this professional organization is to improve neuroendocrine tumor (NET) disease management through increased research and educational opportunities
The HealthWell Foundation®
is a 501(c)(3) non-profit, charitable organization that helps individuals afford prescription medications they are taking for specific illnesses. The Foundation provides financial assistance to eligible patients to cover certain out-of-pocket health care costs, including:
Prescription drug coinsurance, copayments, and deductibles
Neuroendocrine Tumors: A comprehensive Guide to Diagnosis and Management
For full text, peer review, consensus statements regarding diagnosis, treatment and monitoring from five different countries CLICK HERE Neuroendocrine Tumors: A comprehensive Guide to Diagnosis and Management (PDF file - Full text 265 pages)
Eugene A. Woltering, MD, FACS; Aaron I. Vinik, MD, PhD, FCP, MACP; Vay Liang W. (Bill) Go, MD; Thomas M. O’Dorisio, MD
Published by Inter Science Institute 2006.
The GI Council of Inter Science Institute presents this comprehensive guide to diagnosis and management of neuroendocrine tumors to provide information and inspiration to all levels of clinicians, from novices to those professionally engaged in the field of neuroendocrine research, treatment, and analyses. This guidebook adds the new dimension of patient monitoring, not only through powerfully discriminating assays but through the recognition of clinical presentations and syndromes. This expertise is made possible by more than 150 years of cumulative experience of the advisory council.
Carcinoid-Dr On-Line Listserv
Does your doctor know how to diagnose and treat carcinoid/NETs? Attention carcinoid/NET patients and caregivers: You are encouraged to tell the members of your medical team about the resource below. Feel free to share this information with other carcinoid and neuroendocrine tumor patients and their caregivers, as well as any healthcare professionals who
you believe may be interested in participating in the Carcinoid-Dr listserv.
Carcinoid-Dr Listserv (For healthcare professionals only)
We are pleased to announce that the Association of Cancer Online Resources (ACOR) is now hosting a Listserv called Carcinoid-Dr. This Listserv was activated in February 2006.
Members of this Listserv communicate with each other by sending e-mails to the Listserv, which then distributes the messages to all other members. Membership in this Listserv is limited to healthcare professionals.Any healthcare professional who wishes to subscribe should send an e-mail to: carcinoid-dr-request@listserv.acor.org and describe their professional credentials and their reasons for joining, and provide their office address and phone number.
Your Medical Record Rights
"From time to time, several of us have complained about incorrect medical records. A friend just sent me a site that offers state by state guides to your rights under HIPAA and how to obtain and to amend your medical records." Information provided by Deborah Kilmartin May 2007
Your Medical Record Rights A federal law called the HIPAA Privacy Rule gives you the right to see, get a copy of and amend (correct) your medical record by adding information to it. (HIPAA stands for the "Health Insurance Portability and Accountability Act.") Most states also have laws that give you rights in your medical record. These consumer guides are intended to help you understand your rights to your medical records under a combination of these laws. CLICK HERE for PDF file CLICK HERE for website
Websites sponsored by Novartis Pharmaceuticals
Information site for carcinoid patients by Novartis . The carcinoid syndrome website for patients and their caregivers is completed and now up! This site, intended for the newly diagnosed and those living with carcinoid syndrome, features "questions to ask your doctor" and a sign-up program to receive updated information from Novartis. Take a look at the Resources section (http://www.carcinoid.com/info/resources/downloads.jsp) to see the detailed scientific information in the form of flash animations.
