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General Info | Tests & Levels | Treatments/Studies | Thyrogen | Related Issues | Pharmacology | Radiation Exposure | Support and Financial Assistance | More Resources | Bibliography | About the Review Process | En Español


GENERAL INFO

American Thyroid Association.  The American Thyroid Association (ATA) is dedicated to promoting scientific and public understanding of the biology of the thyroid gland and its disorders, so as to improve methods for prevention, diagnosis, and management. The ATA supports excellence in research, patient care, and education of patients, the public, and the medical and scientific communities. The ATA is committed to guiding public policy as it relates to the prevention and management of thyroid diseases. The web site includes ATA statements on topics such as thyroxine products, generic levothyroxine, and the role of potassium iodide; research updates from ATA journals and meetings; and patient education materials. The web site also includes a geographic list of thyroid and thyroid cancer specialist physicians. ThyCa is an active member of the ATA Alliance for Patient Education.

American Association of Clinical Endocrinologists: American Association of Clinical Endocrinologists (AACE). Information about endocrine topics, including thyroid disorders. The web site has a geographic listing of endocrinologists, including those who specialize in the treatment of thyroid diseases. In addition, AACE publishes Clinical Practice Guidelines
(https://www.aace.com/publications/guidelines/). These include Clinical Guidelines for Thyroid Carcinoma (2001) and Clinical Guidelines for Thyroid Nodules (2006).

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 web site 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  - American Cancer Society. Basic overview information. The American Cancer Society also provides information about all cancers, and services for patients and caregivers.

Welcome to PubMed National Library of Medicine. Search all the medical research literature through PubMed, a service of the U.S. National Library of Medicine at the National Institutes of Health. PubMed includes over 16 million citations from MEDLINE and other life science journals for biomedical articles back to the 1950s. PubMed includes links to full text articles and other related resources.

NCI's CancerNet Cancer Information (National Cancer Institute) is part of the U.S. National Institutes of Health. The NCI web site covers all types of cancers and offers information for both patients and caregivers. NCI Thyroid Cancer Info, 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), a not-for-profit alliance of 20 of the world’s leading cancer centers, is dedicated to improving the quality and effectiveness of care provided to patients with cancer. This is the web site address for the NCCN Clinical Guidelines for Thyroid Cancer (2006): 
http://www.nccn.org/professionals/physician_gls/PDF/thyroid.pdf. If this link doesn't work for you, go to the NCCN Home Page, then to the link titled "NCCN Clinical Practice Guidelines in Oncology." Then click on the link titled "NCCN Complete Library of Clinical Practice Guidelines Online." Then review the license agreement, scroll to end and then click on “I Agree.” Then click on "Guidelines for Treatment of Cancer by Site." Then click on "Thyroid Carcinoma." Your computer will then automatically download the PDF document for you to read, with the guidelines. (Note: PDF Documents can be read by Adobe Reader. This free software is available for downloading from the Adobe web site, connected through the button at the lower left of ThyCa's home page.)

Johns Hopkins Medical Institutions Site Thyroid Cancer Pro

MD Anderson Thyroid Cancer Info.

Yale Cancer Center: Thyroid Cancer Information

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

Southern California Thyroid Cancer Consortium is a network of thyroid cancer centers serving the large, ethnically and socially diverse thyroid cancer population 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. There is no charge for registration.

Endocrineweb. Thyroid Cancer Information. Provides information about each type of thyroid cancer and its treatment. Endocrineweb also has information about all thyroid diseases.

Light of Life Foundation. Light of Life Foundation provides education for thyroid cancer patients, their families and the lay public.

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.

Thyroid Today.Educational website, particularly for clinicians. Thyroid cancer specialist physicians and other thyroidologists are writers and editors for this site. Includes patient fact sheets, physician articles, and clinical case studies that include decisionmaking steps and explanations.

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. ASCO is major professional organization representing physicians who treat people with cancer.

Find a Thyroid Specialist

En Español

ThyCa web site pages in Spanish

National Cancer Institute: thyroid cancer information in Spanish

National Cancer Institute -All cancer documents in Spanish

 

TESTS and LEVELS    

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

FNA Biopsy Explained: sponsored by endocrineweb.com

A single recombinant human thyrotropin-stimulated serum thyroglobulin measurement predicts differentiated thyroid carcinoma metastases three to five years later. Kloos RT, Mazzaferri EL. J Clin Endocrinol Metab. 2005 Sep;90(9):5047-57. Epub 2005 Jun 21. PMID: 15972576 [PubMed - indexed for MEDLINE]

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.

Preoperative Diagnosis of Benign Thyroid Nodules with Indeterminate Cytology. Erik K. Alexander, M.D., Giulia C. Kennedy, Ph.D., Zubair W. Baloch, M.D., Ph.D., Edmund S. Cibas, M.D., Darya Chudova, Ph.D., James Diggans, Ph.D., Lyssa Friedman, R.N., M.P.A., Richard T. Kloos, M.D., Virginia A. LiVolsi, M.D., Susan J. Mandel, M.D., M.P.H., Stephen S. Raab, M.D., Juan Rosai, M.D., David L. Steward, M.D., P. Sean Walsh, M.P.H., Jonathan I. Wilde, Ph.D., Martha A. Zeiger, M.D., Richard B. Lanman, M.D., and Bryan R. Haugen, M.D. New England Journal of Medicine. June 25, 2012. This study focuses a test (Afirma Thyroid FNA Analysis from Veracyte), which analyzes gene expression when fine-needle aspiration (FNA) is inconclusive, to determine whether a nodule is cancerous. The study concludes that the test can spare some patients with suspicious thyroid nodules from diagnostic surgery.

Editorial in New England Journal of Medicine. June 25, 2012, on preoperative diagnosis of benign thyroid nodules with indeterminate cytology.

Discover MI. Molecular Imaging information web site sponsored by the Society of Nuclear Medicine and Molecular Imaging to educate patients and others 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

Effects of low-iodide diet on postsurgical radioiodide ablation therapy in patients with differentiated thyroid carcinoma. by Pluijmen MJ, Eustatia-Rutten C, Goslings BM, Stokkel MP, Arias AM, Diamant M, Romijn JA, Smit JW. Clin Endocrinol (Oxf). 2003 Apr;58(4):428-35. PMID: 12641625

Radioactive Iodine and the Salivary Glands. by Mandel SJ, Mandel L. Division of Endocrinology, Diabetes, and Metabolism, University of Pennsylvania Medical School, Philadelphia, Pennsylvania 19104, USA. Thyroid. 2003 Mar;13(3):265-71.

Dental Issues and Radioactive Iodine. Summary of presentation by Mark Chambers, M.S., D.M.D., at ThyCa's 2003 Conference in Houston, Texas. ThyCa Journeys Newsletter, Winter 2003-2004, page 5.

Airport radiation detectors and patients who have recently received radioactive iodine. Information and recommendations from ATA

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.

Review article on 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

Managing the Side Effects of Sorafenib and Sunitinib by Laura S. Wood, RN, MSN, OCN. Community Oncology, V 3, N 9, September 2006.

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.

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

Genzyme's Thyrogen website:  This web site has information for patients and physicians. Newly diagnosed patients and long-term survivors can read about how to obtain reimbursement and about the potential role that Thyrogen can play in thyroid cancer management. Physicians can read about thyroid cancer testing, how to obtain Thyrogen, Medicare reimbursement, and the way to use Thyrogen. Content is reviewed by experienced medical information, regulatory, legal, and marketing professionals to ensure that information is accurate and meets regulatory requirements imposed by the FDA.

Booklet from Genzyme: Understanding Thyroid Cancer 

Booklet from Genzyme: Understanding Thyrogen 

Patient Sample Letter to Insurance Company about Thyrogen

Using recombinant human TSH in the management of well-differentiated thyroid cancer: current strategies and future directions. Mazzaferri EL, Kloos RT. Thyroid 2000 Sep; 10(9): 767-78

A single recombinant human thyrotropin-stimulated serum thyroglobulin measurement predicts differentiated thyroid carcinoma metastases three to five years later. Kloos RT, Mazzaferri EL. J Clin Endocrinol Metab. 2005 Sep;90(9):5047-57. Epub 2005 Jun 21. PMID: 15972576 [PubMed - indexed for MEDLINE]

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

FDA Approves Thyrogen® for Use in Thyroid Cancer Ablation — December 2007

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]

Genzyme Announces Final Terms of FDA Consent Decree. May 24, 2010.

FDA CDER Statement to Healthcare Professionals: Restricted Availability of Thyrogen. May 24, 2010

Latest News about Thyrogen Global Supply (March 16, 2011)

Genzyme Update on Supply of Thyrogen® (thyrotropin alfa for injection)  (July 13, 2011)

Thyrogen Supply Update, September 11, 2011

Thyrogen Supply News, May 23, 2012

Genzyme update on supply of Thyrogen (12/22/11

Thyrogen Supply Fully Restored Globally, November 2012

Medullary Thyroid Cancer

When should thyroidectomy be performed in familial medullary thyroid carcinoma gene carriers with non-cysteine RET mutations? by Niccoli-Sire P, Murat A, Rohmer V, Gibelin H, Chabrier G, Conte-Devolx B, Visset J, Ronceray J, Jaeck D, Henry JF, Proye C, Carnaille B, Kraimps JL; Groupe D'etude Des Tumeurs Endocrines. Surgery. 2003 Dec;134(6):1029-36; discussion 1036-7. PMID: 14668737

Surgical management of patients with persistent or recurrent medullary thyroid cancer. by Moley JF, Debenedetti MK, Dilley WG, Tisell LE, Wells SA. J Intern Med. 1998 Jun;243(6):521-6. PMID: 9681853. (Note: scroll down to read the artricle)

Medullary Thyroid Cancer Overview: sponsored by endocrineweb.com

Medullary Thyroid Cancer E-Mail Support Group. ThyCa's e-mail support group for people and families coping with medullary thyroid cancer.

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.

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.

Caprelsa® Patient Access Support (CPAS) Program: Call: 800-367-4999. AstraZeneca, 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® Access Services (EAS): Call: 1-855-253-EASE (3273), available 8:00am to 11:00pm ET, Monday through Friday. Exelixis® Access Services (EAS) offers a full range of services to meet the needs of MTC patients. Their trained professionals can help you with insurance coverage questions, financial assistance, and coordinating delivery of Cometriq®.

Anaplastic Thyroid Cancer

Anaplastic thyroid cancer evolved from papillary carcinoma: demonstration of anaplastic transformation by means of the inter-simple sequence repeat polymerase chain reaction. by Wiseman SM, Loree TR, Hicks WL Jr, Rigual NR, Winston JS, Tan D, Anderson GR, Stoler DL. Arch Otolaryngol Head Neck Surg. 2003 Jan;129(1):96-100. PMID: 12525202

A phase I pharmacokinetic and translational study of the novel vascular targeting agent combretastatin a-4 phosphate on a single-dose intravenous schedule in patients with advanced cancer. by Dowlati A, Robertson K, Cooney M, Petros WP, Stratford M, Jesberger J, Rafie N, Overmoyer B, Makkar V, Stambler B, Taylor A, Waas J, Lewin JS, McCrae KR, Remick SC. Cancer Res. 2002 Jun 15;62(12):3408-16. PMID: 12067983

Anaplastic thyroid cancer: cytogenetic patterns by comparative genomic hybridization. by Miura D, Wada N, Chin K, Magrane GG, Wong M, Duh QY, Clark OH. Thyroid. 2003 Mar;13(3):283-90. PMID: 12729478

Anaplastic thyroid cancer. by Pasieka JL. Curr Opin Oncol. 2003 Jan;15(1):78-83. PMID: 12490766

Anaplastic carcinoma of the thyroid: a 24-year experience. by Tan RK, Finley RK 3rd, Driscoll D, Bakamjian V, Hicks WL Jr, Shedd DP. Head Neck. 1995 Jan-Feb;17(1):41-7; discussion 47-8. PMID: 7883548

Anaplastic Thyroid Cancer E-Mail Support Group. ThyCa's e-mail 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.

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.

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.

Hypoparathyroidism Answers is a web site on hypoparathyroidism sponsored by NPS Pharmaceuticals. 

Thyroid Cancer and Pregnancy

Reproductive and menstrual history and papillary thyroid cancer risk: the san francisco bay area thyroid cancer study. Cancer Epidemiol Biomarkers Prev 2002 Jan;11(1):51-7. Sakoda LC, Horn-Ross PL.
Northern California Cancer Center, Union City, California 94587.

Prognosis for fertility and ovarian function after treatment with radioiodine for thyroid cancer. Postgrad Med J 2002 Feb;78(916):92-3. Vini L, Hyer S, Al-Saadi A, Pratt B, Harmer C.Thyroid Unit, Royal Marsden NHS Trust, Sutton, Surrey, UK.

 

PHARMACOLOGY  

THE MERCK MANUAL - TABLE OF CONTENTS Merck Manual (Full Reference Text) (Look it up !)

RxList - An Internet Drug Index

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

Pfizer (King Pharmaceuticals is now part of Pfizer): Levoxyl and Cytomel Pages

Levothroid web site: A brand of T4, levothyroxine, thyroid hormone replacement

Unithroid Update

Partnership for Prescription Assistance: The Partnership for Prescription Assistance brings together US pharmaceutical companies, doctors, other health care providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that's right for them. Many will get them free or nearly free. The Partnership for Prescription Assistance offers a single point of access to more than 475 public and private patient assistance programs, including more than 150 programs offered by pharmaceutical companies. The information is also available in Spanish. By phone,call toll-free, 1-888-4PPA-NOW (1-888-477-2669).

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. This drug is used for treating medullary thyroid cancer that has spread to other parts of the body.

RADIATION EXPOSURE

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.

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

Chernobyl 20th Anniversary Marks 20 Years of Learning and Reflecting

Radiation Risks to Health: Joint Statement of American Association of Clincal Endocrinologists, American Thyroid Association, The Endocrine Society, and Society of Nuclear Medicine, March 18, 2011

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

ATA Recommendations on Radiation Safety After RAI

DiscoverMI — Patient-Focused Web Site 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. ThyCa: Thyroid Cancer Survivors' Association, Inc. is part of SNM's Patient Advocacy Advisory Board (PAAB).

 

SUPPORT AND FINANCIAL ASSISTANCE

Support Groups - Online Groups and Local Support Groups

See ThyCa's Support page for the Support Groups sponsored by ThyCa: Thyroid Cancer Survivors' Association, Inc.

THYROID-ONC: Thyroid Cancer Online Support Group Summary: You can join this group by sending the message "sub THYROID-ONC your name" to listserv@listserv.acor.org

More Support Services and Financial Assistance

Free Service: Lotsa Helping Hands. Free online caregiving coordination service

  The purpose of the Angel Flight America Network and the National Patient  Travel Centeris "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

Corporate Angel Network 1-866-328-1313

National Organizations that Offer Cancer-Related Services

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
    call 800-367-4999
    AstraZeneca, 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® Access Services (EAS)
    Call: 1-855-253-EASE (3273), available 8:00am to 11:00pm ET, Monday through Friday
    Exelixis® Access Services (EAS) offers a full range of services to meet the needs of MTC patients. Their trained professionals can help you with insurance coverage questions, financial assistance, and coordinating delivery of Cometriq®.

  • 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

Partnership for Prescription Assistance: The Partnership for Prescription Assistance brings together US pharmaceutical companies, doctors, other health care providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that's right for them. Many will get them free or nearly free. The Partnership for Prescription Assistance offers a single point of access to more than 475 public and private patient assistance programs, including more than 150 programs offered by pharmaceutical companies. The information is also available in Spanish. By phone, call toll-free, 1-888-4PPA-NOW (1-888-477-2669).

The Patient Access Network (PAN) Foundation was founded in October 2004 as a solution to help the underinsured access the health care they so desperately need to continue living a relatively normal and productive lifestyle. PAN is an independent, national 501 (c) (3) organization dedicated to providing underinsured patients with co-payment assistance through 21 disease-specific funds that give them access to the treatments they need.

Patient Advocate Foundation: a non-profit organization "that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys.".

The Cancer Legal Resource Center (CLRC) provides free information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer. CLRC is a joint program of the Disability Rights Legal Center and Loyola Law School Los Angeles, California.

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. The CAPRELSA REMS program is at http://www.caprelsarems.com/.

Youth Survivor College Scholarships of American Cancer Society. The college scholarships are for students who were diagnosed with cancer before age 21. Scholarships are by region or state in the United States. To learn about scholarships in a particular region, visit www.cancer.org and put College Scholarship in the Search box.

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.

Financial Resources List from Family Caregiving 101

Expanded listing of drug and patient assistance programs from Cure Today Magazine.

Cancer and Careers educates people with cancer to thrive in their workplace by providing advice from experts, interactive tools, and eduational events. 

 

MORE RESOURCES

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.

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

On-line Medical Dictionary published at the Dept. of Medical Oncology, University of Newcastle upon Tyne, United Kingdom

Online Dictionaries connects to several online general dictionaries. One of these dictionaries is Welcome to Merriam-Webster Dictionary

General Health and Medical Information: Mayo Clinic

General Health and Medical Information: National Institutes of Health

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.

Healthfinder: Federal government Web site. healthfinder® is a Federal Web site for consumers, developed by the Office of Disease Prevention and Health Promotion of the U.S. Department of Health and Human Services together with other Federal agencies. Since 1997, healthfinder® has been recognized as an important resource for linking consumers and professionals to reliable government and nonprofit health and human services information, news, and health-related organizations on the Internet.

AMA - On-Line Doctor Finder: American Medical Association information on almost any doctor in the country.

American Society of Clinical Oncology's Patient Information Resources

Childhood Cancers. National Cancer Institute information and resources.

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

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

Cancer Fatigue and Other Symptoms: This site is sponsored by the Oncology Nursing Society. It provides tips and background information about coping with fatigue and many other symptoms associated with cancer and its treatment. Cancer patients and caregivers can also submit personal questions about cancer fatigue and receive answers, by e-mail, from oncology nurses.

Starbright Foundation:  This foundation creates projects to help seriously ill children and adolescents cope with the challenges they face. It produces materials such as interactive educational CD-ROMs and videos about medical conditions and procedures, gives advice on talking with a health professional, and covers other issues related to children and adolescents with serious medical conditions. All materials are available free of charge. Staff can respond to calls in Spanish.

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

CURE: Free Magazine. Cancer Updates‚ Research & Education is a quarterly magazine focusing on all cancers. It discusses treatment, research, and issues related to coping with cancer

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. Now in its fourth year, this resource helps these patients and their families map the cancer journey. Click here to read more or request your free copy.

  • Low-Iodine Diet: Options for meals and snacks.
  • One-page Low-Iodine Diet Guidelines and Tips
  • Over 340 recipes, plus snacks, and tips in ThyCa's Free downloadable Low-Iodine Cookbook.
  • You also can adapt recipes from your own cookbooks, and get family and friends to help with meal preparation.
  • Another resource is Medichef, from which to purchase prepared meals that are shipped frozen to the lower 48 states of the United States.

COMPLEMENTARY AND ALTERNATIVE APPROACHES TO CANCER

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


OTHER SOURCES OF INFORMATION ABOUT THYROID CANCER, HYPOPARATHYROIDISM, AND ALL THYROID DISEASES

American Thyroid Association: www.thyroid.org

ARGENTINA; Actira: Asociación de Pacientes con Cáncer de Tiroides de la República Argentina

ASIA AND OCEANIA: Asia and Oceania Thyroid Association: URL: http://www.aota.or.kr/

AUSTRALIA: Australian Thyroid Foundation, P.O. Box 186, Westmead, NSW 2145
Australia. E-mail: Thyroid@icpmr.wsahs.nsw.gov.au. URL: www.thyroidfoundation.com.au

Thyroid Australia, P.O. Box 2575, Fitzroy Delivery Centre, Melbourne, VIC 3065 Australia. E-mail: support@thyroid.org.au. 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. E-mail: medneto@uol.com.br

CANADA: Thyroid Foundation of Canada / La Fondation canadienne de la Thyroïde. URL: www.thyroid.ca. The Thyroid Foundation of Canada is a non-profit volunteer organization whose mission is to support thyroid patients across Canada through awareness, education, and research.

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

M.E. N. Type 1 Society (Multiple Endocrine Neoplasia Type 1), Box 100, Meota, Sask, SOM IXO, Canada; Phone: 306-892-2587 Fax: 306-892-2587; E-mail: hockey_freak99@hotmail.com

DENMARK: Thyreoidea Landsforeningen, Strandkrogen 4A, 3630 Jaegerspris, Denmark E-mail:lis_l@get2net.dk URL: www.thyreoidea.dk

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

FINLAND: Thyroid Foundation of Finland, Vettmossvagen 57, Narpes, Finland E-mail: ullslama@tawi.fi

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

Vivre sans Tiroide

GERMANY: Schilddrüsen-Liga Deutschland e.V., Ev. Krankenhaus Bad Godesberg, Waldstrasse 73, 53177 Bonn, Germany E-mail: info@schilddruesenliga.de URL: www.schilddruesenliga.de

Ohne Schilddruse leben e.V.

INTERNATIONAL: Thyroid Federation International, e-mail:tfi@thyroid-fed.org URL: http://www.thyroid-fed.org/

ITALY: Associazione Italiana Basedowiani e Tiroidei, c/o Centro Minerva, Via Mazzini 6, 43100 Parma, Italy E-mail: emma99@libero.it

JAPAN: Japan Thyroid Association, CBON Queen Building 4th floor, Roppongi 7-18-12, Minato-ku, Tokyo 106-0032m Japan

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

THE NETHERLANDS: Schildklierstichting Nederland, Stationsplein 6, 3818 LE Amersfoort, The Netherlands Tel: +31 900 8998866 E-mail: info@schildklier.nlvoorzitter@schildklier.nl URL: www.schildklier.nl

NORWAY: Norsk Thyreoideaforbund, Fr. Nansens plass 9, N-0160, Oslo, Norway E-mail:post@stoffskifte.org URL: www.stoffskifte.org

REPUBLIC OF GEORGIA: Georgian Union of Diabetes and Endocrine Associations (GUDEAS), Prof. Ramaz B. Kurashvili, President, Georgian Medical Diagnostic Centre, 5, Ljubljana Str., Tbiliai, 380059, Republic of Georgia E-mail: 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 E-mail: gasparyan@peterlink.ru

SWEDEN: Sköldkörtelförening i Stockholm, Skidbacksvägen 11B, Se-141 46 Huddinge, Sweden Tel: +46 (0)8 608 22 52 E-mail: skoldkortel@telia.com URL: www.skoldkortelforeningen.se

Västsvenska Patientföreningen för Sköldkörtelsjuka, Mejerivagen 8, 439 36 Onsala, Sweden E-mail:info@vpfs.info URL: www.vpfs.info

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

British Thyroid Foundation, P.O. Box 97, Clifford, Wetherby, West Yorkshire LS23 6XD, U.K. URL: www.btf-thyroid.org

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

Hypoparathyroidism 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 Second Edition. 439 pages, illustrated. Keystone Press, 2010. Available through ThyCa and also at amazon.com.

Low-Iodine Cookbook, Leah Guljord, editor (7th edition, 2010). FREE. Published by ThyCa: Thyroid Cancer Survivors’ Association, Inc. More than 340 delicious recipes, plus guidelines and tips for the low-iodine diet. Downloadable from ThyCa web site, also mailed for small fee.

Thyroid Cancer's Magic Bullet: The Prep, The Pill, The Post. Video/DVD (2010), a 62-minute documentary by filmmaker Nick Isenberg. Physicians’ visits and discussions about thyroid cancer care and radioactive iodine, preparing to receive RAI, the Radioactive Iodine treatment, and procedures after receiving the dose.

Could It Be My Thyroid? by Sheldon Rubenfeld, M.D. 3rd Edition, M. Evans and Co., 2004

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. About all thyroid diseases.

The Harvard Medical School Guide to Overcoming Thyroid Problems by Jeffrey R. Garber, M.D. with Sandra Sardella White. McGraw-Hill, 2005. About all thyroid diseases.

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 web site.

About the Review Process for the ThyCa Web Site and Links List

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

Our web site is continually expanding and now provides more than 600 pages of thyroid cancer information, free publications, survivors' and caregivers' stories, connections to support groups, and news and updates about coming events. In addition, our Links list connects readers with thousands more pages of information and support resources, including all the thyroid cancer research literature in the National Library of Medicine.

Each month we receive many suggestions of materials to add to our web site's Links list. These include web sites, medical journal articles, commercially published books, and free pamphlets and booklets. We thank our readers for your suggestions.

Our Publications Committee and additional volunteers review suggested materials and, as needed, consult further with members of our Medical Advisory Council for further review of medical information. Our Publications Committee members are thyroid cancer survivors, caregivers, and friends with professional and volunteer backgrounds in human services, medicine, nursing, health education, social sciences, and many other fields.

The review process for these suggestions is the same as we use for our own publications. Among the factors considered are accuracy, balance, clarity, completeness, and whether the material extends or adds to material already available on or through our web site.

Our review process takes from one to four months and continues during our ongoing volunteer support and education activities for thyroid cancer survivors and caregivers. At the completion of the process, selected items are added to our web site or Links list.

If you would like to contribute or suggest material for our web site or Links list, please email or mail to ThyCa, Attention: Publications Committee, PO Box 1545, New York, NY 10159-1545.