Southampton, PA

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 or 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; 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 or 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:; write to:  PO Box 1102, Olney, MD 20830-1102; call toll-free:  1-877-588-7904; or visit our website.

An Anaplastic Thyroid Cancer article on our web site offers a unique perspective from a doctor’s point of view for those affected by this kind of thyroid cancer and their loved ones and friends. The author, Maria E. Cabanillas, M.D., F.A.C.E., Associate Professor and Faculty Director of Clinical Research at the University of Texas M.D. Anderson Cancer Center in Houston, Texas has just updated this article.

The article provides an overview of Anaplastic Thyroid Cancer and then delves into some common questions and answers. You can review the entire article or find a question that speaks to you and go from there. We hope you find this helpful!

Washington, DC, (January 26, 2017) – The Patient Access Network (PAN) Foundation and ThyCa: Thyroid Cancer Survivors’ Association, Inc. (ThyCa) today announced they are launching a new alliance to offer a broad range of support for people living with thyroid cancer. Working together, the PAN Foundation and ThyCa will ensure that people living with thyroid cancer have access to both financial and patient support services, providing them with the holistic support needed to best manage their disease.

“Here at PAN, our goal is to help ease some of the financial stress for patients and families facing diseases like thyroid cancer,” said PAN President and CEO Dan Klein. “But we know that financial concerns are just one part of the challenge. In partnering with ThyCa, we can connect patients to additional services and resources, including handbooks and publications, support groups, clinical trial information, and more.”

Thyroid cancer, a cancerous tumor or growth located within the thyroid gland, is the most common endocrine cancer, according to ThyCa. Thyroid cancer is one of the few cancers that has increased in incidence rates over recent years. It occurs in all age groups from children through seniors

“We are thrilled to work with PAN, and to provide extended support to our patients and families,” said ThyCa Executive Director Gary Bloom. “This alliance will connect us to even more patients in need, expanding the number we are able to help, and hopefully alleviating some of the financial pressures that come with the diagnosis, treatment and management of thyroid cancer.”

Patients who qualify for the PAN Foundation’s thyroid cancer program are eligible to receive up to $12,000 per year in financial assistance. Eligible patients must be getting treatment for thyroid cancer; must reside and receive treatment in the United States; must have Medicare health insurance; and the medication for which they seek assistance must be covered by Medicare and must treat the disease directly. In addition, patients must fall at or below 500 percent of the Federal Poverty Level.

Patients, or advocates and caregivers applying on their behalf, can apply for assistance using the PAN Foundation’s online patient portal (, or by calling 1-866-316-7263, 9 a.m. to 5 p.m. Eastern Time, Monday through Friday. To learn more about PAN’s more than 50 disease-specific programs, visit

For ThyCa’s free support groups, materials, events, Thyroid Cancer Awareness Month and year-round awareness campaigns, and thyroid cancer research funds and research grants, visit our website.

A number of news articles have recently emerged characterizing the epidemic of thyroid cancer as “overdiagnosis,” typically in reference to papillary microcarcinomas, which are small cancers. ThyCa: Thyroid Cancer Survivors’ Association, Inc. (, and many of the thousands of survivors we work with, are troubled by this characterization.

The point of these articles should be about the question of treatment, and potentially over-treatment. It is erroneous to classify the situation as one of overdiagnosis, and, more importantly, it is inappropriate to downplay the diagnosis of cancer to the public and those in the health care field. Knowledge is power, and even people with smaller cancers deserve to know what is going on with their bodies.

Furthermore, there is a pervasive generalization that thyroid cancers are not life threatening. This ignores the fact that there are four different types of thyroid cancer: papillary, follicular, medullary and anaplastic. The first two types have aggressive variants that can be difficult to treat, and the last two types are not curable by any current medical definition, with anaplastic requiring prompt and active treatment as the only way to extend the patient’s life.

Finally, these articles often trigger unnecessary upset among people who are currently being treated or have been treated in the past for thyroid cancer. Thyroid cancer survivors are fortunate to have more treatment options today for papillary and follicular thyroid cancer than just a few years ago, with an evolution towards a less aggressive treatment approach for most. This is an encouraging step, and means that the standard of care is advancing.

Nevertheless, making blanket statements about “overdiagnosis” may cause people to believe that they were over-treated in the past under different treatment standards, when the emphasis could instead easily be on the positive advances that have been made for those receiving a diagnosis today.

It is our hope that further studies will help advance the dialogue toward greater awareness of this disease, approaches to avoiding delays in diagnosis, and continued exploration of treatment options for all who are living with thyroid cancer.

ThyCa: Thyroid Cancer Survivors’ Association, Inc. is a non-profit 501(c)(3) organization of thyroid cancer survivors, family members, and health care professionals. We are dedicated to support, education, and communication for thyroid cancer survivors, their families and friends. We also sponsor Thyroid Cancer Awareness Month, year-round awareness activities, and thyroid cancer research fundraising and research grants. 

A 29-member international research panel has concluded that some thyroid tumors are not cancer if they are a variant called “encapsulated follicular variant of papillary thyroid cancer” (EFVPTC) and if they do not have any capsular or vascular invasion. The panel proposed that these tumors be renamed “noninvasive follicular thyroid neoplasm with papillary-like nuclear features (NIFTP).”

Their study is presented in the Journal of the American Medical Association (JAMA) Oncology, and described in the April 14, 2015, New York Times. Yuri Nikiforov, M.D., the lead author, is vice chairman of pathology at the University of Pittsburgh Medical Center. Dr. Nikiforov is a ThyCa Medical Advisor.

The researchers note that this reclassification does not apply to all tumors of this variant. Some of the tumors are cancer, because they have capsular invasion, vascular invasion, or both.

Here are a few of the questions raised in the last few days in ThyCa local support groups, online groups, and e-mails, plus information based on the two articles linked above. If you have any questions about your diagnosis and/or care after reading this article, we encourage you to consult with your physician.

  1. Does this reclassification apply to every thyroid tumor that is encapsulated follicular variant of papillary thyroid cancer (EFVPTC)?

    No. This reclassification is specifically only for EFVPTC with no invasion. The researchers concluded that this reclassification does not include invasive EFVTPC.

  2. Does surgery need to be done?

    Yes, at least the part of the thyroid that contains the tumor needs to be removed so that the pathologist can examine the tissue to determine whether the tumor is completely surrounded by a capsule of fibrous tissue and whether there is capsular or vascular invasion. The results of the tissue analysis will determine whether there is invasion, and, therefore, whether the reclassification applies.

  3. Will a patient with a noninvasive tumor of this variant need further treatment after the surgery?

    The articles note that patients whose tumors will be classified as not cancer will not need further surgery such as a completion thyroidectomy, and will not require radioactive iodine (RAI). All the patients in the study who fit the criteria for reclassification were free of disease during the entire follow-up period of from 10 to 26 years after their initial surgery. None received RAI.

  4. What will be the follow-up over the long term?

    The articles focus on the reclassification rather than on overall long-term care. Individuals should consult with their own physician regarding their care.

    As noted in earlier articles in this Bulletin, during regular medical and dental appointments, ThyCa encourages neck checks to find thyroid nodules. According to the Academy of General Dentistry, brief head and neck evaluations are a standard of care for dental appointments.

  5. Do these findings apply to all papillary thyroid cancer?

    No. The reclassification does not apply to most papillary thyroid cancer. It applies only to encapsulated follicular variant of papillary thyroid cancer (EFVPTC), and only to noninvasive EFVPTC, not all EFVPTC. From the articles, the reclassification applies to about 10,000 of the 64,300 people expected to be diagnosed with thyroid cancer in the United States in 2016.

  6. Is this new classification official?

    The authors of the medical journal article proposed this reclassification and the new name. An editorial in the same issue of the journal also recommends renaming these tumors. The New York Times article says that “eight leading professional societies from around the world signed on to the declassification and to the new name.”

The eight societies are the American Academy of Otolaryngology Head and Neck Surgery, American Head and Neck Society, Brazilian Society of Endocrinology and Metabolism, Brazilian Society of Head and Neck Surgery, British Association of Endocrine and Thyroid Surgeons, International Neural Monitoring Study Group, Japanese Thyroid Association, Latin American Thyroid Association, and World Congress on Thyroid Cancer.

The researchers have also submitted an editorial about this research to Thyroid, the journal of the American Thyroid Association.

ThyCa’s web site and future issues of this newsletter will add more information about this topic.

Do you have questions? If so, please e-mail to

Sanofi Genzyme has introduced two financial assistance programs to support patient access to Thyrogen® (thyrotropin alfa for injection), used when preparing for radioactive iodine.

The Thyrogen® Co-Pay Assistance Program helps with out-of-pocket costs that exceed $100 for eligible patients with commercial insurance.

In addition to Co-Pay Assistance, financial assistance is available for eligible patients with no insurance or with insurance that does not cover Thyrogen®.

For patients who do not qualify for these financial assistance programs, case managers are available to help them connect with independent co-pay assistance foundations that can support out-of-pocket costs associated with Thyrogen®.

For more information, call ThyrogenONE® at 1-888-497-6436, Monday through Friday, 8 a.m. to 8 p.m. EST, or visit the Thyrogen® web site.

February 2016—ThyCa: Thyroid Cancer Survivors’ Association, Inc. ( has joined forces with 30 million Americans and health care advocates around the world for Rare Disease Day® on February 29.  Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face.

ThyCa, founded in 1995 and advised by numerous thyroid cancer experts, provides free support services and resources to patients, caregivers, and professionals worldwide; sponsors events including the annual International Thyroid Cancer Survivors’ Conference and Thyroid Cancer Awareness Month, and sponsors thyroid cancer research grants open to researchers around the world.

Rare thyroid cancers include anaplastic thyroid cancer, medullary thyroid cancer, and variants of papillary and follicular thyroid cancer such as Hurthle cell cancer, tall cell, insular, diffuse sclerosing, and others. In addition, thyroid cancer is rare in children and teens.

ThyCa’s web site has free handbooks on each type of thyroid cancer, as well as numerous videos with thyroid cancer experts, plus detailed information and more resources for all thyroid cancer types.

ThyCa is supporting Rare Disease Day through informative articles sent to 65,000 people in its weekly newsletter, plus information on its web site and in social media messages. 

According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 people. Nearly 1 in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children. There are more than 7,000 rare diseases and only approximately 450 FDA-approved medical treatments.

Rare Disease Day takes place every year on the last day of February. It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe, and is now observed in more than 80 nations. Rare Disease Day is sponsored in the U.S. by the National Organization for Rare Disorders (NORD)®.

For free materials, information, support services, and educational events about rare thyroid cancers, visit ThyCa’s website, For more information about Rare Disease Day in the U.S., go to For information about global activities, go to