Giving and Receiving Care

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LACNETS has a virtual support group and links to other resources for caregivers.

The National Cancer Institute has a resource for caregivers, When Someone You Love is Being Treated for Cancer.

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

CancerCare has a resource for coping with cancer on your own

Help for Cancer Caregivers has resources for caregivers helpforcancercaregivers.org

100 Acts of Love shares ways to help someone living with cancer facebook.com/100ActsofLove/

American Cancer Society provides caregiver resources, including a downloadable guide

Adolescent and Young Adult Resources

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For information about AYA cancer--Adolescent and Young Adults (15-39)--see https://stupidcancer.org/adolescent-and-young-adult-cancer/

Podcast produced by the Neuroendocrine Tumor Research Foundation on AYA cancer. Hear from NET experts about the diagnosis of NETs and prognosis in young people. Hear first hand stories and young people's emotional response to living with cancer.
https://netrf.org/podcast/netwise-episode-34/

Association for Multiple Endocrine Neoplasia (MEN)Disorders has a page of AYA resources on a variety of topics plus videos of patient stories and What's App Youth Groups to join. https://www.amend.org.uk/patients/young-adults/

Stupid Cancer helps to empower everyone affected by adolescent and young adult (AYA) cancer by ending isolation and building community. https://stupidcancer.org/

Our mission to help adolescent and young adult (AYA) patients, survivors and caregivers know they are not alone in their fight with cancer. The Elephant in the room is cancer. Tea is the relief conversation provides. We are the only magazine written for and by the AYA cancer community telling their story in their own words. https://elephantsandtea.com/

The Dear Jack Foundation provides quality of life programming that directly benefits young adult cancer patients, survivors and their families. The programs facilitated by Dear Jack offer hope and guidance to young adults and their support system who are facing or who have faced a life-threatening cancer diagnosis. https://www.dearjackfoundation.org/

Imerman Angels’ mission is to provide comfort and understanding for all cancer fighters, survivors, previvors and caregivers through a personalized, one-on-one connection with someone who has been there. https://imermanangels.org/

General Cancer Organizations

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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: cancersupportcommunity.org

National Coalition for Cancer Survivorship offers resources for taking care of yourself as well as advocating for yourself: canceradvocacy.org

Livestrong Foundation provides tools and resources to support you as a cancer survivor or caregiver: livestrong.org

American Society of Clinical Oncology cancer.net

Man Up to Cancer manuptocancer.org

Imerman Angels finds mentors for cancer fighters, survivors, previvors and caregivers. imermanangels.org

NETS 101: Resources for the Newly Diagnosed

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Carcinoid Cancer Foundation provides Newly Diagnosed the Basics, which leads also to Newly Diagnosed 2: carcinoid.org/for-patients/diagnosis/newly-diagnosed-the-basics/

NET Research Foundation netrf.org/for-patients/newly-diagnosed/

National Institutes of Health (NIH) rarediseases.info.nih.gov/diseases/13445/neuroendocrine-tumor

Learn Advocate Connect: A Neuroendocrine Tumor Society (LACNETS) lacnets.org/newlydiagnosed

NorCal Carcinet norcalcarcinet.org/newly-diagnosed

Neuroendocrince Cancer Awareness Network will send an information packet to patients and families upon request netcancerawareness.org

International Neuroendocrine Cancer Alliance (INCA) has downloadable PDFs, including by primary tumor site incalliance.org/net-info-packs/

Neuroendocrine Cancer Organizations

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The Healing Net Foundation thehealingnet.org

Neuroendocrine Cancer Awareness Network (NCAN) netcancerawareness.org/

Neuroendocrine Tumor Research Foundation (NETRF) NETRF.org

Carcinoid Cancer Foundation carcinoid.org

North American Neuroendocrine Tumor Society (NANETS) nanets.net/resources/patient-resources

NCCN Guidelines for Patients, Neuroendocrine Tumors Select Neuroendocrine Tumors to reach guidelines for patients: nccn.org/guidelines/patients

Learn Advocate Connect: A Neuroendocrine Tumor Society (LACNETS) lacnets.org

Northern California CarciNET Community norcalcarcinet.org

The Pheo Para Alliance pheopara.org

AMEN American Multiple Endocrine Neoplasia Support amensupport.org/

Neuroendocrine Cancer UK neuroendocrinecancer.org.uk

Canadian Neuroendocrine Tumor Society cnets.ca/

International Neuroendocrine Cancer Alliance (INCA) incalliance.org

Ronny Allan–Living with Neuroendocrine Cancer is an informational patient blog that is searchable by topic ronnyallan.net

Inter Science Institute offers a free PDF download of Neuroendocrine Tumors: A Comprehensive Guide to Diagnosis and Management, which has detailed information on biomarkers.

Finding Local Support Groups

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Try these sites to look for a support group that meets near you. You can also find guidance to start your own group.

Neuroendocrine Tumor Research Foundation (NETRF) allows you to search the category “patient group” in their database: netrf.org/for-patients/neuroendocrine-tumor-doctor-database/

Carcinoid Cancer Foundation (CCF) has a directory: carcinoid.org/resources/support-groups/

Neuroendocrine Cancer Awareness Network(NCAN) lists their chapters: netcancerawareness.org/ncan-support-groups/

Communication and Organization Tools

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NET Vitals is a patient-physician communication tool created by LACNETS to help you track essential NET information

Carcinoid NETs Health Storylines, an app by Carcinoid Cancer Foundation, allows you to track symptoms, nutrition, moods, medication and more.

LivingWith is an app for storing information from doctor’s visits and for communicating with loved ones

Abridge is an app to record the conversation at medical appointments

Emergency Bracelets

  • 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
  • Lauren’s Hope has decorative styles to be engraved with your emergency information

Lotsa Helping Hands is a tool to coordinate meals and organize other help

CaringBridge is a communication tool for connecting with the people who care about you and want to help

Carcinoid Syndrome and Other Symptom Management

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National Organization for Rare Disorders (NORD) has information about carcinoid syndrome in their Rare Disease Database.

Carcinoid Cancer Foundation has a website specifically about carcinoid syndrome.

Mayo Clinic mayoclinic.org/diseases-conditions/carcinoid-syndrome/symptoms-causes/syc-20370666

National Center for Biotechnology Information Carcinoid Syndrome article

The pharmaceutical companies with medications for NETs (Sandostatin, Somatuline, Xermelo, Bynfezia) often provide excellent information about carcinoid syndrome on the medication websites.

Legal, Insurance and Financial Challenges

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Triage Cancer provides education on practical and legal issues impacting cancer patients and their caregivers at triagecancer.org. See their Checklist to Minimize Financial Toxicity. See their listing of state by state regulations for the health insurance industry. Look up cancer resources by state

National Cancer Institute has a web page on Financial Toxicity (Financial Distress) and Cancer Treatment

Livestrong provides a summary of results from a 2015 survey Financial Impact of Cancer on Survivors

Laurie Todd is a cancer survivor who has made it her business to help those with cancer appeal denials of insurance coverage. Examples of appeal letters and links to her books can be found on her website theinsurancewarrior.com

Patient Advocate Foundation provides case management services and financial aid to Americans with chronic, life threatening and debilitating illnesses

Cancer Legal Resource Center, a program of the Disability Rights Legal Center, provides free cancer-related legal information and a Patient Legal Handbook

Medicare

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The Official U.S. Government Site for Medicare is a comprehensive site for the Medicare program and all things relating to coverage, plans and regulations. This page explains the supplemental insurance or Medigap coverage

The Medicare Rights Center is a national, non-profit consumer service organization that works to ensure access to affordable health care for older adults and people with disabilities

Medicare Interactive is a service of the Medicare Rights Center and is a free and independent online reference tool designed to help people and HCPs navigate the complex world of health insurance. Check out their page on programs to offset Medicare costs for low-income individuals

The State Health Insurance Assistance Program will help all medicare eligible individuals determine what coverage is best for you

The Center for Medicare Advocacy is a national nonprofit law organization that helps older people and people with disabilities obtain access to Medicare and quality health care:

The Centers for Medicare & Medicaid Services created this Government Glossary of Health Coverage and Medical Terms (OMB Control Numbers 1545-2229, 1210-0147, and 0938-1146)

Yale Insights “Choosing the Wrong Health Insurance Could Kill You” by Jason Abaluck:

Medication Costs

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NeedyMeds is a free online resource to help people afford their medications and health care costs

Goodrx is a pharmacy discount program that may reduce the costs of your medications lower than what your insurance would charge

The Lois Merrill Foundation provides patients in financial need with medical expense assistance

Patient Assistance programs offered by many pharmaceutical companies can help offset costs. RxAssist is a search tool for patient assistance programs. See if the drug you are taking is listed below. If not, try searching by entering the drug company name or drug name and “patient assistance program" in your browser.

  • Somatultine Depot (lanreotide) by Ipsen--Ipsencares.com
  • Sandostatin and Sandostatin LAR Depot (octreotide) by Novartis--Sandostatin.com
  • Xermelo (telotristat ethyl) by TerSera--Xermelo.com
  • Lutathera (utetium Lu 177 dotatate) by Advanced Accelerator Applications, a Novartis company--AAAPatientConnect.com