NIH Funded Study will Build a Tool to Help Patients Make Informed Thyroid Cancer Treatment Decisions

NIH Funded Study Will Build a Tool to Help Patients Make Informed Thyroid Cancer Treatment Decisions.

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A young woman undergoing treatment for cancer sits on her sofa and looks out the window.

Research underway at MedStar Health Research Institute will empower patients with a new tool to help them decide whether to have radioactive iodine therapy after thyroid cancer surgery.


Thyroid cancer is highly treatable when detected early.  Nearly all new cases are papillary or follicular thyroid cancers, which are known as well-differentiated thyroid cancers (DTCs). DTCs grow slowly, are less mutated, and are typically less severe.

The first treatment for a DTC is surgery to remove all or part of the thyroid gland.  After surgery, the cancer cells are analyzed, and patients are classified into risk groups based on how likely the cancer is to return.  About 50-55% of patients fall into a low-risk group, with clinical follow-up and no need for further treatment. 

About 10 to 15% of patients have more aggressive, high-risk thyroid cancers that can clearly benefit from radioactive iodine therapy. These patients get radioactive iodine (RAI) therapy after surgery—an oral dose of radioactive iodine absorbed mostly by the thyroid gland that destroys any remaining thyroid tissue and cancer that was not removed during surgery.  RAI is effective in treating cancer, but it can carry risks and side effects such as:

  • Changes in taste
  • Dry mouth
  • Fertility changes
  • Nausea and vomiting
  • Hospitalization or isolation because the patient's body may give off radiation following therapy
  • Reduced tear formation and dry eyes
  • Tenderness and swelling in the neck and salivary glands
  • Increased dental problems
  • Salivary gland infections and stones

But the remaining 30-40% of patients have intermediate risk disease, and these patients have a big decision: Choose RAI, with the risk of side effects?  Or choose active monitoring, potentially with an increased risk for a cancer recurrence?

Unfortunately, not all patients have access to the information they need about RAI.  MedStar Health performs more thyroid surgeries than anywhere else in the country, with a very low incidence of complications.  However, hospitals that don't see much thyroid cancer may not have the latest data, and education on DTC treatment and RAI side effects may vary among specialists.

Patients in all clinical settings need a consistent, accessible way to get information about their care.  The goal of our study,  funded by a National Institutes of Health through a grant from the National Institute of Dental and Craniofacial Research, is to develop a robust, free online tool to help guide patients’ decision to weigh the risks and benefits of RAI for intermediate-risk thyroid cancer.

Patient education tool to make decisions about Radioactive Iodine Therapy (RAI).

Our decision tool is a guide that will help patients understand the risks and benefits of RAI so they can make an informed decision about their treatment.

The tool will be developed in the next six months, after which our teams will test it for effectiveness and conduct a pilot study before launching a randomized controlled trial.  Jacqueline Jonklaas, MD and Kristi Graves, PhD at MedStar Georgetown University Hospital and Georgetown Lombardi Comprehensive Cancer Center lead the study.

Once finalized, this tool will be accessible online.  It will include educational modules for patients  and a component to help them understand how their decision might impact their lives.  For example, the guide will cover long-term considerations, such as:

  • Treatment of RAI side effects. Most patients with intermediate-risk thyroid cancer are expected to live long, otherwise everyday lives.  Living 30 or more years with a dry mouth, salivary glands that do not work normally, or dry eyes can be disruptive and lower anyone's quality of life.  Patients should understand what they're signing up for before agreeing to RAI treatment.  The long-term impact of RAI  on fertility has not been well-studied, especially in women.  Men who receive large doses of RAI may develop lower sperm counts or, in some cases, infertility.  Doctors usually recommend that women undergoing RAI therapy avoid getting pregnant for 12 months after treatment. However, this recommendation is not based on long-term follow up data. RAI has not been shown to cause adverse effects in children born to parents who had the treatment in the past.
  • Other associated cancers. Rarely, patients who undergo RAI may have an increased risk of developing leukemia or stomach or salivary gland cancer.  Most studies have indicated that these complications are rare, but patients younger than 45 may be at an increased risk of developing these cancers following RAI treatment.

Improving patient outcomes with expertise.

Research has demonstrated that engaging patients in making decisions about their healthcare is critical in improving health outcomes, reducing costs, and improving patient satisfaction.

For some patients, social factors like finances, transportation, and childcare can negatively impact the ability to attend lengthy or multiple clinic visits.  A free online tool can  educate these patients about their health and provide information that they might not otherwise be able to access, supporting efforts to bring health equity to all patients. 

Our providers are international experts in the treatment of thyroid cancer, and we bring together multidisciplinary teams to consult on cases so we can give our patients the best care.  We're constantly improving our services through research, including several leading-edge projects in collaboration with national and international partners that will make us even more vital as a team.

Well-educated doctors are better equipped to ensure their patients are well-informed.  Our goal is for all patients in all practices to be exposed to this same high-quality care.

Want more information about this study?

Learn more about eligibility criteria and how to enroll.

Call 833-998-0900 or Contact

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