Patient Resources: Neuroendocrine Tumors

About RMCC

There are many resources available for patients to learn about NETs from trusted sources, which we identify here. We have also included information about cancer in general and support that is available. Some resources are grouped by specific topics referenced in the text.

NET 101: Resources for the Newly Diagnosed

Carcinoid Cancer Foundation
LACNETS
Living with NETs for a helpful glossary of terms
National Institutes of Health (NIH)
NET Research Foundation
Neuroendocrine Cancer Awareness Network will send an information packet to patients
and families upon request
NorCal CarciNET

Organizations and Groups That Provide Information and/or Support

Note: Many of these sites also post videos of experts explaining various topics. Some NET organizations hold patient conferences, and usually those presentations can be found online. Knowledge of this disease is evolving quickly so you may want to focus on the most recent material.

Neuroendocrine Cancer Organizations

AMEN American Multiple Endocrine Neoplasia Support
Canadian Neuroendocrine Tumor Society
Carcinoid Cancer Foundation
The Healing Net Foundation
International Neuroendocrine Cancer Alliance (INCA)
Inter Science Institute offers a free PDF download of Neuroendocrine Tumors: A Comprehensive Guide to Diagnosis and Management, which has detailed information on biomarkers.
Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS)
NCCN Guidelines for Patients, Neuroendocrine Tumors select Neuroendocrine Tumors to reach guidelines for patients
Neuroendocrine Cancer Awareness Network (NCAN) 
Neuroendocrine Cancer UK
Northern California CarciNET Community
North American Neuroendocrine Tumor Society (NANETS)
The Pheo Para Alliance
Ronny Allan–Living with Neuroendocrine Cancer an informational patient blog that is searchable by topic 
Tumor Research Foundation (NETRF)

Local Support Groups

Because of the rarity of this cancer, local support groups can be hard to find. Try these sites to look for a group near you. You can also find guidance to start your own group.

Carcinoid Cancer Foundation (CCF) has a directory
Neuroendocrine Cancer Awareness Network (NCAN) lists their chapters
Neuroendocrine Tumor Research Foundation (NETRF) allows you to search the category “patient group” in their database

General Cancer Organizations

American Cancer Society
American Society of Clinical Oncology
Cancer Support Community (merger of Gilda’s Club Worldwide and The Wellness Community) offers wellness programs, groups, and free individual counseling for cancer patients and immediate family members
Livestrong Foundation provides tools and resources to support you as a cancer survivor or caregiver
National Coalition for Cancer Survivorship offers resources for taking care of yourself as well as advocating for yourself

Specific Resources by Topic

Communication and Organizational Tools

Abridgean an app to record the conversation at medical appointments
Carcinoid NETs Health Storylines an app by Carcinoid Cancer Foundation, allows you to track symptoms, nutrition, moods, medication and more
CaringBridge a communication tool for connecting with the people who care about you and want to help
Lauren’s Hope has decorative styles to be engraved with your emergency information
LivingWith an app for storing information from doctor’s visits and for communicating with loved ones
Lotsa Helping Hands a tool to coordinate meals and organize other help
NET Vitals a patient-physician communication tool created by LACNETS to help you track essential NET information
The Road-ID contains an access code to current medical records you have uploaded to the cloud. Emergency personnel can quickly access your medical records and respond appropriately

Advance Care Planning

LACNETS “What Matters Most” webinar with palliative care clinician, author, poet, educator Redwing Keyssar, RN
National Comprehensive Cancer Network (NCCN) provides an explanation of Advance Directives with links to other helpful resources.
NETRF Advance Care Planning
PREPARE for Your Care offers advice on completing advance health care directives

Carcinoid Syndrome and Other Symptom Management

Carcinoid Cancer Foundation has a website specifically about carcinoid syndrome
National Center for Biotechnology Information Carcinoid Syndrome article
National Organization for Rare Disorders (NORD) has information about carcinoid syndrome in their Rare Disease Database
The pharmaceutical companies with medications for NETs (Sandostatin, Somatuline, Xermelo, Bynfezia) often provide excellent information about carcinoid syndrome on the medication websites.

Giving and Receiving Care

100 Acts of Love shares many ways to help someone living with cancer 
American Cancer Society provides caregiver resources, including a downloadable guide
CancerCare has a resource for coping with cancer on your own
Help for Cancer Caregivers has a description of respite care

LACNETS has a NET Caregiver Support Group and resources for caregivers
Ring Theory “How not to say the wrong thing” by Susan Silk and Barry Goldman
Share The Care™ is an approach for caregivers to build a powerful caregiving team