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Thyroid Cancer Resources | Diagnostic Tests | Treatments/Studies | Thyrogen | Related Issues | Pharmacology | Radiation Exposure | Support and Financial Assistance | International Resources | Bibliography | About the Review Process | En Español


THYROID CANCER RESOURCES

American Thyroid Association.  The American Thyroid Association (ATA) is an organization of medical professionals dedicated to promoting scientific and public understanding of the thyroid gland and its disorders, to improve prevention, diagnosis, and management. ATA supports excellence in research, patient care, and education of patients, the public, and the medical and scientific communities. 

Hormone Health Network:  The Hormone Health Network is the public education affiliate of the professional association The Endocrine Society. The Hormone Health Network provides hormone-related health information for the public, physicians, allied health professionals and the media. The website includes a geographic list of thyroid and thyroid cancer specialist physicians.

International Thyroid Oncology Group: The mission of the International Thyroid Oncology Group (ITOG) is to accelerate a cure for the most challenging thyroid cancers through the collaborative efforts of our unique multidisciplinary team of leading physicians, scientists, and advocates to design, coordinate, and prioritize state-of-the-art clinical trials and correlative science.

Thyroid Cancer: Resource Center.  Sponsored by the American Cancer Society. Basic overview information. The American Cancer Society provides information about services for patients and caregivers.

Welcome to PubMed. Search all the medical research literature through PubMed, a service of the U.S. National Library of Medicine at the National Institutes of Health. 

NCI's CancerNet Cancer Information (National Cancer Institute) is part of the U.S. National Institutes of Health. The NCI website covers all types of cancers and offers information for both patients and caregivers, including: Statistics, Treating Thyroid Cancer, Clinical Trials, Genetics, Causes, Risk Factors, Prevention of Thyroid Cancer, Complementary and Alternative Medicine, Testing for Thyroid Cancer, Coping with Thyroid Cancer, Support and Resources, Cancer Literature, Related Information, Emotional Concerns, and many studies.

NCCN: National Comprehensive Cancer Network.  National Comprehensive Cancer Network. The National Comprehensive Cancer Network (NCCN) is a not-for-profit alliance of 20 of the world’s leading cancer centers. They produce the NCCN Clinical Guidelines for Thyroid Cancer (2022). If you haven't already created a free NCCN account you will be able to register for one. Once you complete this, you will be able to open the guidelines. They also produce the NCCN Guidelines for Patients - Thyroid Cancer (2022).

MD Anderson Thyroid Cancer Info.

Dana Farber Cancer Institute Thyroid Cancer Info. includes list of clinical trials

Southern California Thyroid Cancer Consortium is a network of thyroid cancer centers in Southern California.

Medscape. Medscape.com is an information resource that is part of WebMD. Medscape offers information for medical specialists, primary care physicians, and other health care professionals.

Endocrineweb. Provides information about each type of thyroid cancer and thyroid diseases and their treatment.

fnational pLight of Life Foundation. Light of Life Foundation provides education for thyroid cancer patients.

Thyroid Disease Resource Text - Thyroid Cancer. This chapter is from THYROID DISEASE MANAGER©, which is intended to provide physicians, researchers, and trainees around the world with information about all aspects of human thyroid physiology and thyroid disease.

People Living With Cancer (PLWC). Patient information website of the American Society of Clinical Oncology (ASCO). Educational information plus free physician-led online discussions on topics related to cancer.

Find a Thyroid Specialist

En Español

ThyCa website pages in Spanish

National Cancer Institute: thyroid cancer information in Spanish

National Cancer Institute -All cancer documents in Spanish

 

DIAGNOSTIC TESTS  

Interpretation of Thyroid Tests Thyroid Tests Explained. Interpretation - description - sponsored by endocrineweb.com

FNA Biopsy Explained: sponsored by endocrineweb.com

Afirma Thyroid FNA Analysis – Veracyte  . The Afirma Thyroid FNA Analysis from Veracyte combines cytopathology and the Afirma Gene Expression Classifier, for determining whether a thyroid nodule is benign or cancerous. Medicare covers this test.

Discover MI. Sponsored by the Society of Nuclear Medicine and Molecular Imaging to educate patients about nuclear and molecular imaging and procedures used to diagnose, monitor, and treat a variety of diseases, including thyroid cancer.

 

TREATMENT and STUDIES

Papillary, Follicular and their Variants

Dental Issues and Radioactive Iodine. Summary of presentation by Mark Chambers, M.S., D.M.D., at ThyCa's 2003 Conference.

Reducing the incidence of 131I-induced sialadenitis: the role of pilocarpine.Silberstein EB. Department of Nuclear Medicine, University of Cincinnati Medical Center, , Cincinnati, OH : J Nucl Med. 2008 Apr;49(4):546-9. Epub 2008 Mar 14.

Managing Side effects of Sunitinib, used for some thyroid cancer patients with metastatic disease. Sunitinib therapy for metastatic renal cell carcinoma: recommendations for management of side

Thyroid Cancer: Emerging Role for Targeted Therapies by Jennifer A. Sipos, M.D., and Manisha H. Shah, M.D. Ther Adv Med Oncol. 2011;2(1):3-16.

Nexavar® (sorafenib) - Bayer HealthCare.  Approved by the U.S. Food and Drug Administration to treat advanced differentiated thyroid cancer that does not respond to radioactive iodine.

LenvimaTM (lenvatinib) - Eisai.  Approved by the U.S. Food and Drug Administration and in Europe, United Kingdom, and Japan to treat advanced differentiated thyroid cancer that does not respond to radioactive iodine.

Thyrogen® (recombinant TSH) - Papillary and Follicular and their variants

Genzyme's Thyrogen® website:  This website has information for patients and physicians. Patients can read about how to obtain reimbursement and about the potential role that Thyrogen® can play in thyroid cancer management. 

Booklet from Genzyme: Understanding Thyrogen® 

Thyrogen® Added to Medicare’s Competitive Acquisition Program (CAP) (September 2006)

Recombinant human TSH-assisted radioactive iodine remnant ablation achieves short-term clinical recurrence rates similar to those of traditional thyroid hormone withdrawal. Tuttle RM, Brokhin M, Omry G, Martorella AJ, Larson SM, Grewal RK, Fleisher M, Robbins RJ. Journal of Nuclear Medicine. 2008 May;49(5):764-70. Epub 2008 Apr 15. PMID: 18413378 [PubMed - indexed for MEDLINE]

 

Medullary Thyroid Cancer

Medullary Thyroid Cancer Overview: sponsored by endocrineweb.com

Medullary Thyroid Cancer Email Support Group. ThyCa's email support group for people and families coping with medullary thyroid cancer.

FDA Approves Vandetanib on April 6, 2011

CAPRELSA® (vandetanib) REMS Program (Risk Evaluation and Mitigation Strategy) — Astrazeneca - 2011
AstraZeneca has developed the “CAPRELSA Patient Access Services”, or CPAS to assess patients’ insurance coverage and direct patients to appropriate sources for financial assistance for which they may be eligible. The CPAS phone number is 800-367-4999.


Anaplastic Thyroid Cancer

Anaplastic Thyroid Cancer Email Support Group. ThyCa's email support group for people and families coping with anaplastic thyroid Cancer.

Enhanced survival in locoregionally confined anaplastic thyroid carcinoma: a single-institution experience using aggressive multimodal therapy. Foote RL, Molina JR, Kasperbauer JL, Lloyd RV, McIver B, Morris JC, Grant CS, Thompson GB, Richards ML, Hay ID, Smallridge RC, Bible KC. Thyroid. 2011 Jan;21(1):25-30. Epub 2010 Dec 16.

Phase Ib Clinical Trial Recruiting Patients with Anaplastic Thyroid Cancer

RELATED HEALTH ISSUES

Hypoparathyroidism

The HypoPARAthyroidism Association, Inc. The HypoPARAthyroidism Association, Inc. is a voluntary, non-profit organization that provides education and support for with all forms of Hypoparathyroidism, which can result from the removal of or damage to the parathyroid glands during thyroid surgery.

Hypopara Answers is a website on hypoparathyroidism sponsored by Takeda. 

Graves Disease

Graves' Disease and Thyroid Foundation (GDATF) is a non-profit organization that helps patients better understand the symptoms and treatments for Graves'  disease.  GDATF provides patient services, including support groups,, as well as pubic education, professional education, and support for research to find the cause and cure for Graves' disease.  Some people with Graves' disease also develop thyroid cancer.  Phone: 877.643.3123.

PHARMACOLOGY  

COMETRIQ® (cabozantinib) - EXELIXIS.  COMETRIQ® is a  a prescription medicine used to treat people with medullary thyroid cancer that has spread to other parts of the body. For more information about Cometriq® call: 1-855-253-EASE (3273). 

SYNTHROID Prescribing Information SYNTHROID Info. A brand of T4, levothyroxine, thyroid hormone replacement

Pfizer: Levoxyl and Cytomel Pages

Levothroid website: A brand of T4, levothyroxine, thyroid hormone replacement

Tirosint: A brand of T4 thyroid hormone replacement available in a gel cap.


Unithroid Update

CAPRELSA® (vandetanib) REMS Program (Risk Evaluation and Mitigation Strategy) — Sanofi Genzyme has developed the “CAPRELSA Patient Access Services”, or CPAS to assess patients’ insurance coverage and direct patients to appropriate sources for financial assistance for which they may be eligible. This drug is used for treating medullary thyroid cancer that has spread to other parts of the body.

COMETRIQ® (cabozantinib) — is a prescription medicine used to treat people with medullary thyroid cancer that has spread to other parts of the body. For more information about Cometriq® call: 1-855-253-EASE (3273). 

Natpara® for Hypoparathyroidism

FDA Approves Lenvima® (lenvatinib) for RAI-refractory progressive differentiated thyroid cancer.

Nexavar® (sorafenib) - Bayer HealthCare.  Approved by the U.S. Food and Drug Administration to treat advanced differentiated thyroid cancer that does not respond to radioactive iodine.

LenvimaTM (lenvatinib) - Eisai.  Approved by the U.S. Food and Drug Administration and in Europe, United Kingdom, and Japan to treat advanced differentiated thyroid cancer that does not respond to radioactive iodine.

RADIATION EXPOSURE

Exposure to I-131 through fallout from above-ground nuclear testing in the 1950s and early 60s. The National Cancer Institute's information for health care professionals and the public.

Exposure to I-131 from Hanford Nuclear Reservation: Hanford Community Health Project (HCHP)

Potassium Iodide information, news, and recommendations from the American Thyroid Association

Potassium Iodide and the Thyroid Gland. Interview with Kenneth D. Burman, M.D., Endocrinologist and ThyCa Medical Advisor, 2002. 

Hospitalization vs. Going Home: the Ins and Outs of I-131 Treatment

Thyroid Cancer: The Facts, by Glenn D. Braunstein, M.D., March 28, 2011

ATA Recommendations on Radiation Safety After RAI

DiscoverMI — Patient-Focused Website sponsored by the Society of Nuclear Medicine (SNM) to provide patients with information about nuclear medicine and molecular imaging and how it can play a critical role in the detection, treatment and management of cancer and other diseases.

FINANCIAL ASSISTANCE

The purpose of the National Patient Travel Center is "to ensure that no financially-needy patient is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of a means of long-distance medical air transportation." Housing too.  Phone: 1-800-296-1217 

Fact Sheet: Financial Help for People With Cancer. CancerCare's checklist, tip sheets, and resource lists.


Medication Purchase Assistance Programs

  • Caprelsa® Patient Access Support (CPAS) Program
    Sanofi Genzyme, the maker of Caprelsa, is committed to helping patients with advanced medullary thyroid cancer (MTC). Once your health care team has prescribed Caprelsa for you, CPAS can provide the following: (1) Insurance Verification, including benefit verification, and help with facilitating prior authorization process, and (2) Patient access programs, including Caprelsa Patient Savings Program for eligible insured patients, and identification of possible alternate coverage options for qualified underinsured and uninsured patients. Safety information.

  • Cometriq® Assistance through Exelixis COMETRIQ® (cabozanitinib) -- Exelixis COMETRIQ® is a prescription medicine used to treat people with medullary thyroid cancer that has spread to other parts 

  • Nexavar® - REACH (Resource for Expert Assistance and Care Helpline) Call: 866-639-2827. REACH (Resource for Expert Assistance and Care Helpline) is a valuable resource for Bayer Oncology patients.  Once patients have been prescribed one of the oncology drugs from Bayer (Nexavar®), REACH reimbursement counselors are able to provide access to financial support for eligible patients, including co-pay assistance, patient education, and guidance from a team of nurses, along with specialty pharmacy provider (SPP) assistance. Enrollment forms are available online. Call: 800-367-4999

Cancer Support Community (some centers are named The Wellness Community or Gilda’s Club). Nonprofit organization with centers providing free emotional support and education for people with any type of cancer, as well as caregivers.

Lost your employer sponsored health insurance? Quick Guide to Options When Losing Employer-Sponsored Health Insurance covers the various options for comprehensive health insurance coverage that someone with a preexisting condition, like cancer, might have.

Manage your finances and know how to best utilize adequate health insurance. For information on how to avoid the financial burden of cancer, having adequate health insurance, using health insurance effectively, and other personal and practical costs. Steps for Managing Finances and Insurance After a Cancer Diagnosis

COVID-19, as states begin to reopen and employees are asked to return to work, people with a cancer diagnosis, and their caregivers, are wondering what options they have. Triage Cancer’s recently published blog on employment rights for people with compromised immune systems offers answers.

 

MORE RESOURCES

National Disease Research and the Human Biological Database Interchange. The National Disease Research Interchange (NDRI) is a nonprofit organization that serves scientists with customized biomaterials for use in studies to understand human disease. The Human Biological Database Interchange is part of NDRI. This resource was developed because cells, tissues, and organs are required to investigate how human disease progresses and to develop new drugs and therapies for treatments and cures. These biomaterials are placed in a repository sponsored by NDRI and made available at cost to scientists worldwide. Researchers use these biomaterials in their genetic and other studies to understand and potentially prevent disease. Cancer is one of the diseases studied. Individuals and families of patients afflicted with a wide range of medical conditions are often interested in donating organs or tissues for research targeted at understanding the disease or developing new treatment options. Normal tissue is also needed by medical researchers for 'control' comparison studies, as well as general medical research. Depending on the nature of the donation, NDRI will coordinate tissue recovery with the patient's surgeon or hospital pathology department.

National Organization for Rare Disorders (NORD). NORD is a nonprofit federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. A rare or "orphan" disease affects fewer than 200,000 people in the United States. There are more than 6,000 rare disorders that, taken together, affect approximately 25 million Americans. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

QuackWatch Home Page: This site is sponsored by Quackwatch, Inc., a nonprofit corporation whose purpose is to combat health-related frauds, myths, fads, and fallacies.

American Society of Clinical Oncology's Patient Information Resources

Childhood Cancers. National Cancer Institute information and resources.

Coping with Cancer: For Caregivers, Family and Friends: Caregiver resource from the National Cancer Institute.

Hospice Info: Directory of hospice resources, prepared by the National Cancer Institute.

Starbright Foundation:  This foundation creates projects to help seriously ill children and adolescents cope with the challenges they face.

Cancer Care. Support services to people with all cancer and their loved ones.

CURE: Free Magazine. Cancer Updates‚ Research & Education.

The Patient Resource Cancer Guide is a free publication that was created to empower and prepare newly diagnosed and newly restaged cancer patients to become their own advocates.

American Cancer Society resources and information on complementary and alternative approaches

National Institutes of Health: National Cancer Institute’s National Center for Complementary and Alternative Medicine


INTERNATIONAL RESOURCES

American Thyroid Association: www.thyroid.org

ARGENTINA; Actira: Asociación de Pacientes con Cáncer de Tiroides de la República Argentina
URL: actiracancerdetiroides.blogspot.com/p/quienes-somos.html  

ASIA AND OCEANIA: Asia and Oceania Thyroid Association: URL: http://www.aothyroid.org

Thyroid Australia. URL: www.thyroid.org.au

BRAZIL: Instituto da Tiroide, Dr. Geraldo Medeiros-Neto, President, Rua Prof. Artur Ramos, 96-50,
01454-903 Sao Paulo, SP, Brazil. Email: medneto@uol.com.br

CANADA: Thyroid Foundation of Canada / La Fondation canadienne de la Thyroïde. URL: www.thyroid.ca

Thyroid Cancer Canada / Cancer de la Thyroide Canada. URL: www.thyroidcancercanada.org.

DENMARK: Thyreoidea Landsforeningen, URL: www.thyreoidea.dk

EUROPE: European Thyroid Association. URL: www.eurothyroid.com/

FRANCE; Association des malades de la thyroïde, B.P. 1,82700 Bourret, France. Email: asso.thyroide@worldonline.fr

Vivre sans Tiroide

GERMANY: Schilddrüsen-Liga Deutschland e.V., URL: www.schilddruesenliga.de

Ohne Schilddruse leben e.V.

INTERNATIONAL: Thyroid Federation International, URL: http://www.thyroid-fed.org/

ITALY: Associazione Italiana Basedowiani e Tiroidei - AIBAT, c/o Centro Minerva, Via Mazzini 6, 43100 Parma, Italy, Email: emma99@libero.it
ITALY:  Atta Lazio Onlus

JAPAN: Japan Thyroid Association

LATIN AMERICA: Latin American Thyroid Society. URL: http://www.lats.org/

THE NETHERLANDS: Schildklier Organisatie Nederland (SON), URL: 
www.schildklier.nl

NORWAY: Norsk Thyreoideaforbund, URL: www.stoffskifte.org

REPUBLIC OF GEORGIA: Georgian Union of Diabetes and Endocrine Associations (GUDEAS), Email: diabet@access.sanet.ge

RUSSIA: Thyroid Foundation of St. Petersburg, Prof. Elina G. Gasparyan, President, "Professor" Medical Centre, 42 Chaykovsky St., St Petersburg 191123, Russia Email: gasparyan@peterlink.ru

SPAIN: AECAT,  Asociación Española de Cáncer de Tiroides, www.aecat.net

SWEDEN: Sköldkörtelförening i Stockholm, URL: www.skoldkortelforeningen.se

Västsvenska Patientföreningen för Sköldkörtelsjuka, URL: https://skoldkortelforbundet.se/

 

UNITED KINGDOM: British Thyroid Association. Email: contact@british-thyroid-association.org URL:www.british-thyroid-association.org

Butterfly Thyroid Cancer Trust (United Kingdom). Supports patients with thyroid cancer.

Parathyroid UK (HPTH UK). National organization in United Kingdom working to benefit all people with Hypoparathyroidism & other rare parathyroid conditions.

Association for Multiple Endocrine Neoplasia Disorders ( AMEND)

 

BIBLIOGRAPHY -- FOR FURTHER READING AND REFERENCE

Thyroid Cancer: A Guide for Patients. Douglas Van Nostrand, M.D., Gary Bloom, and Leonard Wartofsky, M.D., editors. Expanded Third Edition. 461 pages, illustrated. Keystone Press, 2019. Available through ThyCa and also at amazon.com.

Low-Iodine Cookbook, Daria Jerauld, editor (9th edition, 2021). FREE. Published by ThyCa: Thyroid Cancer Survivors’ Association, Inc. Delicious recipes, plus guidelines and tips for the low-iodine diet. Downloadable from ThyCa website, also mailed for free.

Your Thyroid: A Home Reference by Lawrence Wood, M.D. David S. Cooper, M.D., and E. Chester Ridgway, M.D. 4th edition, Ballantine Books, 2005. Kindle Edition 2013. About all thyroid diseases.

Harvard Medical School Thyroid Disease: Understanding Hypothyroidism and Hyperthyroidism by Jeffrey R. Garber, M.D. 2012. 

Thyroid Cancer: A Comprehensive Guide to Clinical Management3rd edition, Leonard Wartofsky, M.D., and Douglas Van Nostrand, M.D., editors. Medical Textbook, Humana Press, 2012.

Cancer: Principles and Practice of Oncology, 9th edition, Vincent T. DeVita Jr. M.D., Theodore S. Lawrence, Steven A. Rosenberg M.D., Ph.D. and Ronald A. DePinho, editors. Medical Textbook, Lippincott Williams & Wilkins, 2011. (2,800 pages, general chapters on cancer research, causes, treatments, prevention. Includes a chapter on thyroid cancer.)

Surgery of the Thyroid and Parathyroid Glands, 2nd edition. Gregory W. Randolph, M.D., editor. Medical textbook with many chapters on thyroid cancer management. Saunders, an imprint of Elsevier Sciences, 2012.

Cancer Clinical Trials: A Commonsense Guide to Experimental Cancer Therapies and Clinical Trials. Tomaz M. Beer, M.D., and Larry W. Axmaker, Ed.D. DiaMedica Publishing, 2012.

American Thyroid Association Patient Education Web Brochures. Over 15 educational brochures on topics related to the thyroid gland and thyroid disorders. On the ATA website.

About the Review Process for the ThyCa Website and Resources List

Our website and free support services are for education and support. They are not for commercial use.

Our website is continually expanding and provides thyroid cancer information, free publications, survivors' and caregivers' stories, connections to support groups, and news and updates about coming events. In addition, our Resources list connects readers with thousands more pages of information and support resources.

If you would like to contribute or suggest material for our website or Resources list, please email or mail to ThyCa, Attention: Publications Committee, PO Box 1102, Olney, MD 20830-1102.


Last updated:  May 22, 2022