Thyroid Cancer Awareness Month Spotlights Need for Early Detection and More Research

While the most common thyroid cancers are usually treatable if found early, some types and variants are often aggressive and difficult to treat. And, unlike many other cancers, the mortality rate for thyroid cancer has increased in recent years. 

People of all ages, from infants through seniors, can be diagnosed with thyroid cancer. In addition, patients need lifelong daily medication and periodic testing following treatment. The expenses can be high, and treatments may have side effects that impact the patient’s quality of life.  

ThyCa: Thyroid Cancer Survivors’ Association, Inc. created Thyroid Cancer Awareness Week nearly 20 years ago, and expanded it to a full month, to create greater awareness about thyroid cancer.   

Throughout Thyroid Cancer Awareness Month, people worldwide communicate several key points: 

  • “Find It Early” messages to encourage medical professionals perform a quick neck checks through palpation using their fingers, together with expert follow-up if a nodule is found. 
  • The urgent need for more research for new treatments and cures for all thyroid cancer. 
  • Connections to thyroid cancer education with experts, the annual International Conference, support groups both in-person and online, and awareness and research fundraising events. 

The nonprofit ThyCa: Thyroid Cancer Survivors’ Association, Inc. is marking its 23rd year of providing a wide array of free services and resources to thyroid cancer survivors, families, medical professionals, and the public around the world.For information and free resources, visit our website.

July 9, 2018—ThyCa: Thyroid Cancer Survivors’ Association, Inc. is proud to announce five new research grants for thyroid cancer research into complex aspects of all types of thyroid cancer. ThyCa has also awarded two continuation grants. 

This is the sixteenth consecutive year of ThyCa research grants. The grants are funded through donations to ThyCa from thyroid cancer patients, family members, and friends. 

ThyCa grants are open to researchers and institutions worldwide. An independent expert panel of the American Thyroid Association (ATA) reviewed applications and selected the recipients of three new grants plus two continuation grants. The recipient of a fourth new grant was selected by an independent expert panel of the American Association of Endocrine Surgeons (AAES). The fifth grant was awarded by the Team Taylor fundraiser to a researcher at Duke University.

“We’re extremely honored by our donors’ support, which makes it possible for ThyCa to fund this urgently needed thyroid cancer research,” said Gary Bloom, ThyCa Executive Director, who is a thyroid cancer survivor. “There is a great need for more thyroid cancer research, because this cancer is one of the few in which mortality has increased in recent years.” 

The New ThyCa Grant Recipients and Projects: 

Grants in cooperation with the American Thyroid Association: 

  • Wayne Miles, Ph.D., Assistant Professor, Ohio State University School of Medicine, Columbus, Ohio. His project is titled “Proteomic-led Discovery of Essential Genes in Medullary Thyroid Cancer (MTC).” It focuses on how cancer cells adapt to the loss of the Retinoblastoma 1 (RB) tumor suppressor gene and which of these changes contribute to the survival and growth of MTC cells. This grant is a collaborative grant from ThyCa: Thyroid Cancer Survivors’ Association, Inc., and Bite Me Cancer.
  • Miles Miller, Ph.D., Investigator, Massachusetts General Hospital, and Assistant Professor, Harvard Medical School, Boston, Massachusetts. His project is titled “Co-opting Tumor-associated Macrophages in Anaplastic Thyroid Cancer (ATC) To Enhance Immune Checkpoint Blockade Response.” It will use advanced microscopy approaches to understand how macrophage subsets influence drug response in ATC, with the goal of aiding strategies for combination therapy, antibody engineering, and patient selection.This grant is this year’s Ric Blake Memorial Thyroid Cancer Research Grant, named for ThyCa Co-Founder Ric Blake.
  • Brendan Frett, Ph.D., Assistant Professor, University of Arkansas for Medical Sciences, Little Rock, Arkansas. His project is titled “Dual Inhibition of RET and Aurora B To Study the Simultaneous Regulation of Multiple Oncogene Pathways in Medullary Thyroid Cancer.” It will involve generating single-agent inhibitors of both RET and Aurora B to better target thyroid cancers expressing a RET oncogene.  

Grant in cooperation with the American Association of Endocrine Surgeons:

  • Lawrence Andrew “Drew” Shirley, M.D., M.S., Ohio State University Wexner Medical Center, Columbus, Ohio. His project is titled “Integrin-Linked Kinase Facilitates Communication Between Cancer-Associated Fibroblasts and Immune Cells in Papillary Thyroid Cancer.” The project will examine the role of cancer-associated fibroblasts (CAFs) in thyroid cancer, because the critical role of CAFs in other cancers is well understood, but their role in thyroid cancer is largely unknown. Dr. Shirley’s research aims to assess their role in thyroid cancer in order to uncover new markers and targets for new treatments for patients with papillary thyroid cancer who fail traditional treatments and lack alternative therapies. 

Grant in cooperation with Team Taylor of North Carolina:

  • Heather Stapleton, Ph.D., Associate Professor, Duke University, Durham, North Carolina. Her project is titled “Investigating Environmental Exposures and Papillary Thyroid Cancer.” This multidisciplinary project will focus on Iredell County, North Carolina, because this county is indicated in the North Carolina cancer registry to have a higher thyroid cancer incidence than other counties in the state. The research effort will focus on chronic indoor exposure through dust or the water system, to chemicals associated with coal ash and to flame retardant chemicals that have previously been associated with papillary thyroid cancer. 

The continuation grants were awarded to these researchers:

  • Glenn J. Hanna, M.D. Harvard Medical School, Boston, Massachusetts, for the project titled “Correlating the Circulating Immune Profile with Response to Dual Immune Checkpoint Inhibition in Advanced Thyroid Cancer.” This grant is the 2017 Ric Blake Memorial Thyroid Cancer Research Grant, named for ThyCa Co-Founder Ric Blake.
  • Jens Lohr, M.D., Ph.D., Dana-Farber Cancer Institute, Boston, Massachusetts for the project “Characterization of Treatment Response in Thyroid Cancer by cfDNA.”  

“We’re proud to award these new grants, which support research in areas important for all thyroid cancer,” said Bloom 

ThyCa’s research fund funds welcome donations of any size. Information about how to support ThyCa’s Rally for Research can be found on the ThyCa Rally for Research page.

About ThyCa: Thyroid Cancer Survivors’ Association, Inc.ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a nonprofit organization of thyroid cancer survivors, caregivers, and health care professionals, dedicated to support, education, communication, awareness, and thyroid cancer research funding.

This year ThyCa marks its 23rd year of providing a wide array of free services and resources to thyroid cancer survivors, families, medical professionals, and the public. These include thyroid cancer support groups; one-to-one support; educational events including the annual International Thyroid Cancer Survivors’ Conference plus seminars and workshops; free handbooks on thyroid nodules and all types of thyroid cancer, weekly newsletter, downloadable low-iodine cookbook, patient information packets, and thyroid cancer awareness materials; and pediatric backpacks with information kits for children and teens with thyroid cancer and their families. ThyCa’s comprehensive educational web site has information in 10 languages: English, Chinese, French, Greek, Hebrew, Italian, Japanese, Portuguese, Russian, and Spanish. 

ThyCa receives guidance from its Medical Advisory Council of more than 50 world-recognized experts in the field of thyroid cancer. ThyCa sponsors Thyroid Cancer Awareness Month in September, a worldwide observance, plus year-round awareness campaigns. ThyCa also raises funds for thyroid cancer research and has awarded research grants each year since 2003. 

Details are available on ThyCa’s website or by calling 1-877-588-7904 or e-mailing thyca@thyca.org.

Updated:  October 3, 2018

The Conference Hotel is completely sold out at the special rate. You can ask the hotel whether a room is available at their regular rate. 

Hilton Chicago / Oak Lawn Hotel
9333 South Cicero Avenue
Oak Lawn, IL  60453
708-425-7800

Free parking. See Driving Directions at the end of this page. 

The Overflow Hotel is completely sold out at the special rate. 

DoubleTree by Hilton Chicago-Alsip
5000 West 127th Street
Alsip, IL 60803
708-371-7300 

Nearby Hotels

Below is a list of other hotels within 4 miles of the conference hotel, as well as close to Midway Airport so they may offer free shuttle service to/from Midway Airport. All these hotels will be offering their regular market rate at this point. These hotel may offer you a better rate (especially online), but here’s what they offered us by phone as of October 3, 2018.

Hampton Inn, 708-496-1900
King or 2 double beds $171/night, parking $17/day

Hilton Garden Inn, 708-496-2400
King bed $186/night, parking $17/day

Hyatt Place, 708-594-1400
King bed $179/night, parking free

Residence Inn, 708-458-7790
King bed $179/night, parking free

Sleep Inn, 708-594-0001
King bed $134/night, 2 double beds $144/night, parking $17/day

Hope to see you there! 

Driving Directions to the Conference Hotel
Plus other Transportation Directions

Hilton Chicago / Oak Lawn
708-425-7800

The Hilton Chicago/Oak Lawn Hotel offers ample parking and is convenient to Tri-State Tollway I-294, Interstates 55 and 57, and Metro Chicago CTA Orange Line, which travels to downtown Chicago. 

Transportation Directions webpage, with a link for you to get directions

Driving from Downtown Chicago

Take I-55 South. Exit onto Cicero Avenue South. Continue South on Cicero Avenue approximately 3 miles to 94th Street and turn left at Hilton Chicago/Oak Lawn hotel entrance.

From Chicago Midway Airport

Exit airport and drive 3 miles south on Cicero Ave. to the hotel. 

HOTEL SHUTTLE: Complimentary from 5:30 a.m. – 10:30 p.m. 

BY TAXI: Charge from Airport to Hotel would be $15.00.

Distance from Hotel: 4 mi.
Drive Time: 15 min.

From Chicago-OHare International Airport

Directions

Take 294 south and exit at 95th Street east (Oak Lawn), go three miles east to Cicero Avenue and make a left. CAB FARE: approximately $60

Distance from Hotel: 18 mi.
Drive Time: 30 min.

From Gary, Indiana Regional Airport

Distance from Hotel: 22 mi.
Drive Time: 30 min.

Dear ThyCa Friend, 

This message comes to you in cooperation with ThyCa: Thyroid Cancer Survivors’ Association, Inc. 

We are thyroid cancer researchers who are planning a research study to compare surgery to active surveillance (just monitoring, no surgery) as an initial management strategy for Low Risk Thyroid Lesions (LRTLs). 

LRTLs include small papillary thyroid cancers confined to the thyroid gland, and nodules with certain characteristics that make them likely to be cancerous. 

Today, most people with LRTLs have surgery. Active surveillance is a relatively new approach, without very much research on it. We want your perspective to help us refine this study. 

Regardless of what type of thyroid cancer or nodule you have experienced, or if you are a caregiver for someone with thyroid cancer or a nodule, we want to hear from you. 

Who is doing this survey? We are a group of researchers representing nearly 20 hospitals around the country, partnering with ThyCa: Thyroid Cancer Survivors’ Association and Light of Life Foundation. The group is led by doctors at The Dartmouth Institute for Health Policy & Clinical Practice in New Hampshire and Memorial Sloan Kettering Cancer Center in New York. 

How will my answers be used? This is an anonymous survey. No information about you will be collected or kept. We will use you answers to refine our research study comparing surgery to active surveillance for LRTLs. 

Your perspectives tell us if we are asking appropriate questions in the research– questions that are relevant to you.

Please feel free to skip any questions you do not want to answer. This survey should take less than 10 minutes to complete. 

Thank you in advance for taking part in this survey.

Louise Davies, M.D., Dartmouth Institute for Health Policy & Clinical Practice, New Hampshire
Benjamin Roman, M.D., Memorial Sloan Kettering Cancer Center, New York
Michael Tuttle, M.D., Memorial Sloan Kettering Cancer Center, New York

May 4, 2018 — The U.S. Food and Drug Administration has approved Tafinlar® (dabrafenib) and Mekinist® (trametinib), administered together, for the treatment of anaplastic thyroid cancer (ATC) that cannot be removed by surgery or has spread to other parts of the body (metastatic), and has a type of abnormal gene, BRAF V600E (BRAF V600E mutation-positive).

“This is the first FDA-approved treatment for patients with this aggressive form of thyroid cancer, and the third cancer with this specific gene mutation that this drug combination has been approved to treat,” said Richard Pazdur, M.D., director of the FDA’s Oncology Center of Excellence and acting director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research. 

Anaplastic thyroid cancer accounts for about 1 to 2 percent of all thyroid cancers. 

The efficacy of Tafinlar and Mekinist in treating ATC was shown in an open-label clinical trial of patients with rare cancers with the BRAF V600E mutation. 

Read more about this FDA decision.

Five physicians specializing in endocrinology, nuclear medicine, and surgery, plus more features will headline the upcoming New York Thyroid Cancer Survivors’ Workshop, on Saturday, June 9, 2018, from 8:30 a.m. to 5 p.m. at North Shore University Hospital, 300 Community Drive, Manhasset, New York.

This FREE event is sponsored by the nonprofit ThyCa: Thyroid Cancer Survivors’ Association, Inc. Sessions will meet in Tower Conference Rooms 1-3 on the First Floor of the Tower Pavilion.

“This educational and supportive event is open to the public,” says Abby Melendez, Workshop Coordinator and Facilitator of the ThyCa Long Island Support Group, the host group. “Everyone interested in thyroid cancer invited to learn from experts and take part in discussion roundtables with other thyroid cancer survivors and families. We welcome patients, caregivers, their friends, and health care professionals.”

Attendees are invited to come for all or part of the day. Walk-in attendees are welcome, or register online in advance on the ThyCa Conferences/Workshops page.

Speakers include:

  • Deborah DeBetta, Teacher of Mindfulness-Based Stress Reduction and Creator/Founder of Mind Body Education
  • Craig Bickford, Thyroid Cancer Care Collaborative Database Manager and IT Specialist
  • Donald Margouleff, M.D., Nuclear Medicine Physician Emeritus
  • Carolyn Maxwell, MD., Endocrinologist
  • David J. Myssiorek, M.D., F.A.C.S., Head & Neck Oncologist-Otolaryngologist/ENT
  • Gene Tronco, M.D., Nuclear Medicine Physician
  • Justin Yozawitz, MD., Endocrine Surgeon

Discussion roundtables will be led by thyroid cancer survivors and caregivers.

Hosting this free event is the ThyCa Long Island Support Group, facilitated by Abby Melendez for more than 16 years. Visit ThyCa’s Conferences page for more details, including the workshop flyer and free online registration. For more information, e-mail longisland-ny@thyca.org or thyca@thyca.org or phone 516-608-5113.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is an international nonprofit 501 (c)(3) organization of thyroid cancer survivors, family members, and health care professionals, serving people worldwide since 1995 and advised by more than 50 internationally recognized thyroid cancer specialists. For information and free materials, e-mail to thyca@thyca.org; write to PO Box 1102, Olney, MD 20830-1102; call toll-free 1-877-588-7904; or visit our website.

Physicians specializing in endocrinology, nuclear medicine, and surgery headline the upcoming 17th Annual Thyroid Cancer Workshop in the DC area, sponsored by ThyCa: Thyroid Cancer Survivors’ Association, Inc., on Saturday, May 12, from 8 a.m. to 4:30 p.m. at Holy Cross Hospital, 1500 Forest Glen Road, Silver Spring, Maryland.

This event is free. Patients, caregivers, friends, and everyone interested are invited to come and learn from experts, get answers to questions about thyroid cancer care and research, and take part in discussion roundtables with other thyroid cancer survivors and families.

Everyone interested is welcome to attend for all or part of the day. Walk-in attendees are welcome, or register online in advance.

Physician speakers include:

  • Melanie Blank, M.D., Nephrologist and Yoga Teacher, Silver Spring, MD
  • Kenneth D. Burman, M.D., Endocrinologist, MedStar Washington Hospital Center, Washington, DC
  • Vaninder K. Dhillon, M.D., Otolaryngologist, Johns Hopkins Medicine, Bethesda, MD
  • Erin A. Felger, M.D., Surgeon, Medstar Washington Hospital Center, Washington, DC
  • Jacqueline Jonklaas, M.D., Endocrinologist, MedStar Georgetown University Medical Center, Washington, DC
  • Kanchan P. Kulkarni, M.D., Nuclear Medicine Physician, MedStar Washington Hospital Center, Washington, DC
  • Alissa Mendes, R.D., L.D.N., Registered Dietitian, Shady Grove Adventist Hospital, Rockville, MD

In addition to the physicians’ presentations and question-and-answer sessions on thyroid cancer care and research, the day will include discussion roundtables led by thyroid cancer survivors. Roundtable topics will include coping with thyroid cancer in the short and long term, vocal cord issues, stress and fears around testing and treatment, and complementary approaches for well-being.

Host groups for this free event are four ThyCa Support Groups: ThyCa Baltimore, ThyCa Northern Virginia, ThyCa Rockville, and ThyCa Washington, DC.

Visit our Conferences Page for details and online registration.

For more information, email Washington_DC@thyca.org or thyca@thyca.org or phone 301-493-8810.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is an international nonprofit 501 (c)(3) organization of thyroid cancer survivors, family members, and health care professionals, advised by internationally recognized thyroid cancer specialists and serving people worldwide since 1995. For more information e-mail to:  thyca@thyca.org; write to:  PO Box 1102, Olney, MD 20830-1102; call toll-free:  1-877-588-7904; or visit our website.

Information on ThyCa’s Free Spring Workshops is now available on our Conference/Workshops page, Workshops will be held in Missouri in April, Maryland in May, and New York in June. 

Save the Date. Plan to attend to learn from physician speakers and resource specialists. Learn and share with others coping with thyroid cancer, at all phases of testing, treatment, and follow-up. We also welcome caregivers, friends, and everyone interested.

  • St. Louis, Missouri
    Saturday, April 21, 2018, from 8 a.m. – 4:15 p.m. CT
    David Pratt Cancer Center – Mercy St. Louis
    607 South New Ballas Road
    St. Louis, MO 63141
    www.thyca.org/sg/mo_stlouis/

  • Silver Spring, Maryland
    Saturday, May 12, 2018, from 8 a.m. – 3:30 p.m. ET
    Holy Cross Hospital
    1500 Forest Glen Road
    Professional and Community Education Center, 1st Floor
    Silver Spring, MD 20910
    www.thyca.org/sg/dc/

  • Manhasset, New York
    Saturday, June 9, 2018, from 8:30 a.m. – 5 p.m. ET
    Northwell at North Shore University Hospital
    Tower Pavilion, 1st Floor, Tower Conference Rooms 1-3
    300 Community Drive
    Manhasset, Long Island, New York
    www.thyca.org/sg/ny_manhasset/


The Medullary Thyroid Carcinoma (MTC) Registry Consortium* is partnering with the American Thyroid Association (ATA) to create a registry (list) of all new cases of MTC diagnosed in the United States over the next 10-15 years (the MTC Registry). The purpose of the MTC Registry is to help better understand what risk factors are associated with the development of MTC. 

The ATA was asked to monitor the development of the registry by the U.S. Food and Drug Administration so that the MTC Registry Consortium would have an independent, professional medical society involved. Select ATA member experts have been asked to provide their experience and knowledge related to medullary thyroid cancer.  The ATA has no oversight or management over the registry or study.  The ATA’s involvement is to provide thyroid cancer expertise only.  Please be assured that the MTC Registry adheres to all Health Insurance Portability and Accountability Act (HIPAA) related regulations in protecting your medical information. 

Medullary thyroid cancer is a rare neuroendocrine tumor that arises from the parafollicular calcitonin producing C-cells in the thyroid gland. The cause of medullary thyroid cancer is known in about 25% of cases which develop as a result of a RET oncogene mutation in the setting of multiple endocrine neoplasia syndromes.  However, the cause of medullary thyroid cancer is unknown in the remaining 75% of patients.  

Risk factors being evaluated by the MTC registry include the patient’s family history of cancer, results of genetic testing, radiation exposure, lifestyle factors (such as smoking and alcohol use), and other medical conditions (such as diabetes, hypothyroidism, hyperthyroidism and obesity).  Since one of the primary goals of the MTC Registry is to determine if some of the medicines used to treat diabetes or weight management could possibly be associated with the development of MTC, a study is being conducted to help collect this data.  Patients who to participate in this study may be asked to provide information on certain medications that they have used prior being diagnosed with MTC. 

The patient’s participation in the study is completely voluntary.  The patient’s decision whether to participate will not affect his or her ability to receive medical care.  There are no medical tests or doctor visits needed to participate.  Participation in the study involves only completing surveys which usually take about 20-30 minutes by phone.  As noted above, the purpose of this project is simply to collect data to better understand risk factors associated with the development of MTC.  Potential study participants will be contacted by the MTC registry team directly, not by the ATA.  Potential study participants not wanting to participate can contact the UBC team at the number listed below to prevent additional contact attempts. 

While the ATA is providing expertise in thyroid cancer, the MTC Registry and patient survey is being funded by a group of pharmaceutical companies (MTC Registry Consortium) and is being managed by a private clinical research organization, United BioSource Corporation (UBC), on behalf of the participating pharmaceutical companies.

How to Join the Registry

If you have been asked to participate and are interested or have any questions about the study, please contact the MTC Registry team at UBC toll-free at 877-739-2576, Monday through Friday between 9:00 am and 5:00 pm Central time.   

* Disclaimer: Medullary Thyroid Carcinoma (MTC) Registry Consortium current member sponsors include Novo Nordisk, AstraZeneca, Eli Lilly and GlaxoSmithKline.

Thyroid cancer diagnoses are predicted to decline to 53,990 in 2018, compared to 56,870 in 2017 in the United States, according to information from the American Cancer Society and the U.S. Department of Health and Human Services. 

In spite of this decline, deaths from thyroid cancer are expected to increase by 2.5% to 2,060 in 2018 from 2,010 in 2017. The thyroid cancer death rate has been gradually increasing for the last several years. 

Thyroid cancer affects people of all ages, from young children to seniors. About half of people diagnosed are under age 50 and three-quarters are female. 

“We are deeply troubled by the continuing rise in deaths due to thyroid cancer, particularly as diagnoses of the disease are expected to decline,” said ThyCa Executive Director Gary Bloom, himself a 22-year thyroid cancer survivor. 

“This disturbing trend signals a need for additional research, continued exploration of treatment options, more patient and public education and support, and renewed urgency around awareness and early detection,” continued Bloom. “These are key areas of focus for ThyCa, and we will continue to lead these efforts.” 

ThyCa urges everyone to learn about thyroid cancer and ask for a neck check, which takes only a few seconds and does not require special equipment, at their routine medical appointments. 

For free materials and tips for raising awareness, visit our Awareness page.