Myths and Truths About Thyroid Cancer Educational Initiative Honors Thyroid Cancer Awareness Month with Launch of New #TruthAboutTC Social Media Challenge
ThyCa: Thyroid Cancer Survivors’ Association, Light of Life Foundation, and Eisai Team Up to Increase Awareness by Urging People with Thyroid Cancer to Share their Experiences
A thyroid cancer diagnosis can lead to significant distress as patients and caregivers cope with various medical, emotional and economic challenges, as survivors, patients and caregivers have attested. Yet because the majority of thyroid cancers can be successfully treated with surgery and radioactive iodine, the notion exists that thyroid cancer is a “good cancer.” For many patients this misconception can minimize their diagnosis and lead to confusion about the overall impact of the disease and uncertainty about the journey ahead.
As part of the Myths and Truths About Thyroid Cancer (“MyTh“) educational campaign, which encourages this community to discuss the realities of living with their diagnosis, and in honor of the more than 62,000 individuals who will be diagnosed with thyroid cancer this year in the United States and many thousands in other countries, ThyCa: Thyroid Cancer Survivors’ Association, Inc., Light of Life Foundation, Inc., and Eisai Inc. have launched the new #TruthAboutTC social media challenge.
Sharing the #TruthAboutTC
This year, people who want to spread awareness of thyroid cancer and its long-term effects can join in the #TruthAboutTC Challenge by taking a photo depicting a “butterfly hug,” uploading it to Facebook, Twitter, or Instagram using #TruthAboutTC, and tagging their friends to participate. Patients with thyroid cancer, and their friends and loved ones who care for them, can help increase public understanding of the thyroid cancer experience by also sharing a “truth” about their thyroid cancer journey in their #TruthAboutTC posts. For each social media action, which includes posting a “butterfly hug” photo, using #TruthAboutTC, liking, sharing, retweeting, favoriting or commenting, Eisai will donate $1 each to Light of Life and ThyCa, up to a total of $20,000, to help the organizations continue providing resources and support to the thyroid cancer community.
Last year during Thyroid Cancer Awareness Month, survivors and their loved ones took to social media to share their thyroid cancer “truths,” shining a spotlight on the realities of receiving a thyroid cancer diagnosis. Patients opened up about the emotional impact of the disease, especially feelings of anxiety and fear when receiving news that they or a loved one have been diagnosed with cancer. They also shed light on the treatment process, which can be life disturbing and stressful, with follow-up care that can continue for a lifetime.
“As we learned last year, many patients are told that if they are going to get cancer, thyroid cancer is the one to have. But as a thyroid cancer survivor who lives with the long-term emotional and physical effects of the disease, I know firsthand that there is no such thing as a good cancer,” said Joan Shey, Founder of the Light of Life Foundation. “By elevating public awareness and acceptance, we can help change the thyroid cancer dialogue. That’s why we are asking people to join the #TruthAboutTC Challenge to show their support for those coping with thyroid cancer.”
“There are four main types of thyroid cancer, all with different outcomes. And each instance of the disease is as unique as the individual affected. This can leave patients feeling isolated and confused as they search for answers about their diagnosis,” said Gary Bloom, thyroid cancer survivor and Co-Founder and Executive Director of ThyCa: Thyroid Cancer Survivors’ Association. “With diagnoses of thyroid cancer on the rise across the nation and worldwide, patients with all types and stages of thyroid cancer need to have access to information about their specific disease and feel supported by their friends, family and healthcare providers.”
The lack of widespread awareness of the long-term complications and potential severity of thyroid cancer may mean that some patients, particularly those with advanced forms, never find the support they seek. To help educate the public about the unique circumstances of living with this disease and ensure that thyroid cancer patients across the spectrum have greater access to useful information, Light of Life, ThyCa and Eisai will be launching a new Myths and Truths About Thyroid Cancer portal later this fall that will include valuable resources such as:
- Information on the different types of thyroid cancer, including advanced disease
- Guide for navigating the patient journey
- Personal stories from patients with thyroid cancer
- Details about lifelong management and the importance of active surveillance
“This initiative, which emphasizes the need for continued education and access to resources, underscores Eisai’s steadfast commitment to helping address the unmet health care needs of patients and their families,” said Timothy Clark, Senior Director of Government Affairs, Policy, and Corporate Advocacy, Eisai Inc.
“As a company focused on human health care (hhc), we are proud to partner with the Light of Life Foundation and ThyCa: Thyroid Cancer Survivors’ Association on this campaign to build greater networks of support within the thyroid cancer community and illuminate the life-changing realities of this disease.”
About Thyroid Cancer: The Long-Term Physical and Emotional Impact
- The thyroid is a butterfly-shaped endocrine gland in the neck, which makes hormones that help regulate the body’s metabolism and affect numerous other functions in the body, including brain development and the heart and nervous systems.
- There are various types of thyroid cancer including differentiated, medullary, and anaplastic thyroid cancers. Differentiated thyroid cancer, consisting of papillary and follicular types, is the most common, accounting for about 94% of all cases of thyroid cancer.
- The majority of patients with differentiated thyroid cancer are successfully treated with surgery to remove part or all of the thyroid gland, followed in many patients by radioactive iodine therapy, an oral form of radiation that targets and kills thyroid cancer cells.
- However, most thyroid cancers grow slowly, and up to 30% of patients, including those who were successfully treated, can experience recurrence even 10 to 20 years after initial treatment. As a result, follow-up care to check for cancer recurrence or metastasis, as well as for monitoring and management of potential side effects of certain treatments, can continue for a lifetime.
- Additionally, patients who have their thyroid removed must take daily hormone replacement medication for the rest of their lives.
- Some patients may also experience a challenging post-surgery complication called hypoparathyroidism, a lack of parathyroid hormone, which helps regulate calcium, phosphorus and vitamin D levels in the blood and bones. This can lead to muscle cramps and spasms, brittle nails, dry hair and skin, seizures, and cataracts, among other issues.
• Together, treatment-related effects and the emotional impact of the disease can cause some patients to experience ongoing challenges, including lack of energy, difficulty concentrating, fatigue, weight gain, memory loss, migraines and depression.
Less than 10% of patients diagnosed with differentiated thyroid cancer will experience metastatic disease, in which their cancer will spread to other places in the body. While many of these patients with metastatic differentiated thyroid cancer receive radioactive iodine (RAI), the disease will become refractory in 15% to 30%, meaning the cancer fails to respond to RAI. RAI-refractory cancers exhibit a more aggressive behavior and are more difficult to treat.
Medullary thyroid cancer, which accounts for about 4% of thyroid cancers, can sometimes spread to lymph nodes, the lungs, or liver even before a nodule is discovered on the thyroid, making it more difficult to find and treat.
Anaplastic carcinoma is a rare form of thyroid cancer that is diagnosed in about 2% of all patients. It is the most aggressive form of thyroid cancer with the most severe effects on patient health and overall survival.
Both medullary and anaplastic thyroid cancers can spread quickly to other parts of the body and often require different treatment options.
About ThyCa: Thyroid Cancer Survivors’ Association, Inc.
ThyCa: Thyroid Cancer Survivors’ Association, Inc., founded in 1995, is an international nonprofit organization of survivors, family members and health care professionals. Advised by 54 thyroid cancer specialists, ThyCa provides a comprehensive network of services and resources that educate and support patients and their families, share experiences, improve patient-physician communications, raise public awareness of thyroid cancer, and support research for a future free of thyroid cancer.
ThyCa’s extensive website provides free educational materials in eight languages, 12 online support groups for each type and situation with thyroid cancer, and more than 120 local support groups in nine countries, a free Low-Iodine Cookbook with over 420 recipes, a Thyroid Cancer Events Calendar, a free weekly newsletter reaching 65,000 people, and opportunities to meet and learn from thyroid cancer experts via videos, webinars, seminars, workshops, and the annual International Thyroid Cancer Survivors’ Conference. ThyCa sponsors Thyroid Cancer Awareness Month worldwide each September, as well as year-round awareness campaigns. In addition, ThyCa raises funds for thyroid cancer research and has awarded 60 thyroid cancer research grants to researchers in six countries. For more information on ThyCa, its services and resources, please visit www.thyca.org.
About the Light of Life Foundation, Inc.
The Light of Life Foundation, Inc., is a national and international non-profit 501(c)(3) organization dedicated to improving the quality of life of the thyroid cancer patient through continuing education of the lay public and the medical community and promoting research and development to thyroid cancer care.
Founded in 1997 by thyroid cancer survivor Joan Shey and a team of leading physicians at Memorial Sloan Kettering Cancer Center, the Light of Life Foundation has evolved from small patient support groups into a full-fledged national and international network of patients and physicians who are bringing attention to the importance of this disease: the fastest increasing cancer among women and men in the United States. The Light of Life Foundation contributes to the worldwide conversation on thyroid cancer through groundbreaking public awareness campaigns, The Light of Life Honorary Award, the multidisciplinary medical fellowship at Memorial Sloan Kettering Cancer Center, informational patient seminars, patient advocacy research and campaigns, and a robust social media support network. For more information, please visit www.checkyourneck.com.
About Eisai Inc.
At Eisai Inc., human health care (hhc) is our goal. We give our first thought to patients and their families, and helping to increase the benefits health care provides. As the U.S. pharmaceutical subsidiary of Tokyo-based Eisai Co., Ltd., we have a passionate commitment to patient care that is the driving force behind our efforts to discover and develop innovative therapies to help address unmet medical needs.
Eisai is a fully integrated pharmaceutical business that operates in two global business groups: oncology and neurology (dementia-related diseases and neurodegenerative diseases). Each group functions as an end-to-end global business with discovery, development, and marketing capabilities. Our U.S. headquarters, commercial and clinical development organizations are located in New Jersey; our discovery labs are in Massachusetts and Pennsylvania; and our global demand chain organization resides in Maryland and North Carolina. To learn more about Eisai Inc., please visit us at www.eisai.com/US and follow us on Twitter and LinkedIn.