Learn More About Rare Disease Day – February 28

Did you know that there’s a special day in February to bring awareness to Rare Diseases?  For February 28, 2017, make a choice to learn more about rare diseases. Rare Disease Day is sponsored by Eurordis, Rare Diseases Europe and its sponsor in the United States is the National Organization for Rare Disorders

Medullary and anaplastic thyroid cancers are considered rare. Additionally, several papillary and follicular variants are considered rare. 

ThyCa is proud to be an official Friend of Rare Disease Day and would like your help spreading awareness and becoming as informed as possible about rare diseases.

Spread the word about Rare Disease Day. Share this information with your family and friends. Send them to https://www.rarediseaseday.org to learn more! 

Also, visit ThyCa’s web site to watch videos and read about the rare types of thyroid cancer, and get our free handbooks about all thyroid cancer types. In addition, come to the 20th International Thyroid Cancer Survivors’ Conference, October 6 – 8, 2017 in Baltimore, Maryland, to meet and learn from specialists in all types of thyroid cancer.EndFragment

2016 marks the 20th anniversary of the world’s first local thyroid cancer support group, started by ThyCa co-founder Ric Blake. 

When you attend a local support group meeting, you meet others who are coping with the many unique challenges of thyroid cancer. These meetings are wonderful ways to get to know others in person and share experiences and coping tips. 

Thyroid cancer support groups are free and open to patients at any phase of testing, treatment, and follow-up, as well as caregivers, and friends. Many local groups also host guest speakers who speak on any number of topics including the surgical or follow-up aspect of our care, dental issues, dietary concerns, and complementary care topics. 

Among the many benefits of attending support group meetings: 

  • Improved coping skills
  • Clearer understanding of what to expect with your situation
  • An opportunity to talk openly and honestly about your feelings
  • Opportunities to compare notes about resources
  • More

The Boston group that Ric founded meets every month, at Massachusetts General Hospital. Read more about Ric and his many volunteer contributions.

Find all the local thyroid cancer support groups.

Thank you very much to the wonderful volunteer facilitators who lead these helpful groups. If you’re interested in starting a group in your community, ThyCa will help you with materials, training, and tips. Kathryn Wall, co-facilitator of the ThyCa Raleigh, North Carolina, Support Group, and Theresa Wickerham, facilitator of the ThyCa St. Louis, Missouri, Support Group coordinate our Support Groups Program. 

Visit ThyCa’s Local Support Groups page or send an e-mail to support-coord@thyca.org to learn more.

“Anaplastic thyroid cancer (ATC) affects about 500-800 patients per year in the United States….The extreme rarity of ATC means that few doctors have treated patients with this cancer and there is very little good information available to patients,” writes Maria Cabanillas, M.D., of the University of Texas M.D. Anderson Cancer Center.

She notes that “ATC not only grows rapidly, it also metastasizes (spreads to other organs) in most patients. This type of thyroid cancer is always classified as stage IV because of the high mortality (high rate of death) associated with it.”

“However, ATC patients and their loved ones should know that some progress has been made recently,” Dr. Cabanillas adds,“and there are new treatments that may be of benefit and may offer some options for a disease that has historically had relatively few.”

Dr. Cabanillas is a ThyCa Medical Advisor. Her article, “Anaplastic Thyroid Cancer: A Doctor’s Perspective for Patients and Families Living with the Disease,” explains diagnosis, treatment options, and research.

We thank her for sharing this helpful article for ThyCa’s web site. 

The Handbook. Get the free Anaplastic Thyroid Cancer handbook, written and edited by patients, caregivers, and numerous physician specialists. Its 40 pages are packed with medical information and helpful tips from ATC physicians, patients, and caregivers. Topics include ATC critical decisions for patients and caregivers, assessment, treatments, clinical trials, coping recommendations on dealing with ATC’s emotional and practical impacts, and more.

The free ATC handbook is available in these three ways:

  1. as a downloadable PDF (http://www.thyca.org
  2. as an ePub on iTunes and GooglePlay from ThyCa’s home page, and
  3. in its print edition signing up on ThyCa’s Guestbook or by requesting a copy by e-mailing to thyca@thyca.org

Videos with Experts. Six informative videos on the Anaplastic playlist on ThyCa’s YouTube channel focus on Anaplastic Thyroid Cancer. The speakers include Marcia Brose, M.D., Ph.D., Bryan Haugen, M.D., Steven Sherman, M.D., Julie Sosa, M.D., and R. Michael Tuttle, M.D., who are all ThyCa Medical Advisors, as well as Robert Smallridge, M.D., past president of the American Thyroid Association.

These free services available from ThyCa are all linked at ThyCa’s home page.

Learn more in the Pediatric section of our site, and in the resources linked from it. 

Pediatric means age 18 or younger, notes the American Thyroid Association Guidelines on Pediatric Thyroid Cancer. 

  • Thyroid cancer is much more common in adolescents than in younger children.
  • 1.8% of thyroid cancers occur in young people under age 20.
  • Pediatric thyroid cancer cases have increased in recent years.
  • Papillary thyroid cancer accounts for 90% or more of pediatric thyroid cancer. • Follicular thyroid cancer is uncommon in this age group.
  • Medullary thyroid cancer, poorly differentiated thyroid cancer, and undifferentiated (anaplastic) thyroid cancer are all rare in young people.

People of all ages, from young children to seniors, can get thyroid cancer. While the number of children and adolescents diagnosed with pediatric thyroid cancer is very small compared to the numbers among adults, the impacts are substantial for the young person as well as the families involved.

“We are all grateful that most children and adolescents with thyroid cancer have positive outcomes,” writes Lauri Huber, parent and ThyCa volunteer. “However, it is unnerving and frightening to have a child with cancer.” Lauri and Pam Mendenhall, who is also a parent and ThyCa volunteer, moderate ThyCa’s Pediatric Thyroid Cancer E-Mail Support Group.

A wide array of free services are available from ThyCa.


by Bill McClain, as told to Jo Cavallo

In The ASCO Post, the online newsletter of the American Society of Clinical Oncology 

Because medullary thyroid carcinoma is so rare, many physicians are not familiar with this sometimes-fatal subtype and misdiagnose it or lump it together with more curable types of thyroid cancer. 

I’m used to having bumps and cysts pop up on my body, so when I felt a lump on the front of my throat, just below my Adam’s apple, I brushed it off.

More … 

Because medullary thyroid carcinoma is so rare, many physicians are not familiar with this sometimes-fatal subtype and misdiagnose it or lump it together with more curable types of thyroid cancer. 

Raising the age cutoff in the current staging system for well-differentiated thyroid cancer from 45 to 55 years would help avoid overtreatment in 12% of these patients, concluded, a large multicenter study published in the March 2016 issue of ‘Thyroid.’ Jatin P. Shah, M.D., of Memorial Sloan-Kettering Cancer Center is the study’s senior author.

Differentiated thyroid cancer includes papillary, follicular, and their variants. Currently, patients under the age of 45 years are considered to be stage I, unless there is evidence of distant metastases, which then changes the staging status to stage II. In contrast, patients 45 years old or over can be staged as I, II, III, or IV, with stage IV involving distant metastases 

The staging system is from the American Joint Committee on Cancer/Union for International Cancer Controls (AJCC/UICC) and is used in the physician guidelines from the American Thyroid Association (ATA). 

Commenting on the study, Keith C. Bible, M.D., Ph.D., a medical oncologist at the Mayo Clinic, and ThyCa Medical Advisor, said that the question of most importance to patients and doctors is whether to use radioactive iodine (RAI) after a thyroidectomy. 

Dr. Bible noted that the latest ATA guidelines do not have a specific age cutoff or AJCC/UICC stage for defining whether to recommend RAI. He also noted that, as a patient, “it will be preferable to learn that you have stage II, rather than stage IV disease, so there is also the aspect of patient psychology to be considered.” 

Medscape news article

Study abstract