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 the latest publications on carcinoid tumors, please search in PubMed. Type in ” carcinoid neuroendocrine tumors” in the search window.

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 overview of carcinoid and related neuroendocrine tumor issues.

The American Surgeon, Volume 75, Number 10, October 2009, pp. 1025-1029(5)

Click here for the ABSTRACT

  • 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 here.

  • Checklist
    A guide for newly diagnosed patients to help them organize their medical information

Medical Opinions

  • Does your doctor know how to diagnose and treat carcinoid/NETs?

IF NOT, then share this information with your doctor

DID YOU KNOW flyer — click here to download the flyer

  • EDUCATE YOUR DOCTOR, ENCOURAGE HIM/HER TO JOIN NANETS

NANETS logo

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
    • Health insurance premiums
    • Other selected out-of-pocket health care costs

For full text, peer review, consensus statements regarding diagnosis, treatment and monitoring from five different countries CLICK HERE.

Gregg Mamikunian; Aaron I. Vinik, MD, PhD, FCP, MACP; Thomas M. O’Dorisio, MD; Eugene A. Woltering, MD, FACS; Vay Liang W. (Bill) Go, MD; Published by Inter Science Institute 2012.

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.

You can print the full text 288 page PDF file from here.

Or if you prefer you can order the book or a CD from Inter Science Institute.

For book/CD requests write to requests@interscienceinstitute.com, attention Mia Tepper.

  • 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)
The Association of Cancer Online Resources (ACOR) hosts a Listserv called Carcinoid-Dr.

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.organd 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

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

This site, intended for the newly diagnosed and those living with carcinoid syndrome and their loved ones, features “questions to ask your doctor” and a sign-up program to receive updated information from Novartis. Take a look at the Resources section to see the detailed scientific information in the form of flash animations.

Information for New Sandostatin LAR® Depot Patients

For additional information about carcinoid and related neuroendocrine tumors, please continue on to In-depth carcinoid/NET Information.

Websites sponsored by Ipsen

KnowYourNETS is all about empowering people living with gastrointestinal and pancreatic neuroendocrine tumors, sometimes referred to as GEP-NETs or NETs for short, and their loved ones with information and resources to encourage them to expect more from their doctors, expect more from their treatment and expect more from themselves.

Learn more about Somatuline Depot by clicking here and selecting Gastrointestinal and Pancreatic NETs.

Print Friendly