Thyroid Cancer Care Collaborative Offers Patients Decision Support Tools for Treatment

Mark L. Urken, MD, FACS, FACE and R. Michael Tuttle, MD

The Thyroid Cancer Care Collaborative® (TCCC) is an internet-based program developed by the Thyroid Head and Neck Cancer Foundation, in conjunction with some of the nation’s foremost thyroid cancer specialists, to provide the most comprehensive and personalized treatment for those diagnosed with thyroid nodules and/or thyroid cancer.

So often, the care you might receive for these conditions can come from different clinicians in different locations, and gathering all medical records from everyone can be challenging. The TCCC provides an electronic medical record that can be accessed by you as well as your treating clinicians wherever they are located – even if they are working in different healthcare systems in different states or even different countries. In addition to providing a secure, easily accessible medical record data repository, the TCCC also has been designed to benefit you in a number of other ways.

One of these is through the development of decision support tools known as Clinical Decision Making Modules (CDMM), which are designed to help you and your treatment team understand and implement the latest recommendations based on the best available evidence and, often, very involved clinical decisions for thyroid-related care. The CDMMs, numbering 15 in total, are based largely on the American Thyroid Association (ATA) clinical practice guidelines, updated in 2015.

One of the initial decisions that might need to be determined is the extent of surgery to be performed when thyroid cancer has been diagnosed or when surgery is being considered for a nodule that is suspicious for thyroid cancer. A decision step that follows relates to whether or not radioactive iodine (RAI), commonly referred to as Remnant Ablation, should be considered after surgery for thyroid cancer. These two important determinations are outlined in the chart below using the TCCC decision tools. The review process using these tools allows for a discussion about options and the reasons for each option, empowering you, as the individual with thyroid cancer, to actively participate in decisions about your care.

The CDMMs first and foremost are intended to be a guide and not an absolute final decision that replaces your treatment team’s suggestions. Your team, after all, knows you and your specific circumstances the best. A variety of variables are used at the start of each CDMM to include as many of the important factors that should be considered to begin the discussion of treatment options between you and your treatment team or clinician.

Next, a series of questions are presented, and the answers will help you choose a clinical path. Finally, the recommendation is presented in a user-friendly format for you and your medical team/clinician.

It is important to note that there is no perfect tool, and so the “best” answer for treatment is not always the “absolute” final answer. We all wear shoes, but the best size must still be individualized for everyone. One size does not fit all!

Deciding the extent of surgery in thyroid cancer

Surgery is the mainstay of therapy in the majority of individuals diagnosed with either thyroid cancer or a thyroid nodule that is highly suspicious for thyroid cancer. The most common forms of thyroid cancer are known as Papillary Thyroid Cancer (PTC) and Follicular Thyroid Cancer (FTC). The type of surgical treatment has changed quite dramatically in the latest clinical practice guidelines published by the American Thyroid Association in 2015. Factors that should be considered to determine the best surgery plan for those with these cancers include: tumor size, type, number and location (one or both sides of the thyroid and whether or not the tumor has spread outside of the thyroid); possible lymph node involvement, i.e., glands in the neck that could contain cancer (either by known biopsy or suspicious from ultrasound test appearance); family history; history of radiation treatments to the neck; other illnesses that you have, your preferences and other factors such as age, sex, etc. These factors can be put into a checklist as shown below:

The supporting principle of this process is that if you have a single, small thyroid cancer that has not spread outside of your thyroid, you will only need limited surgery. In contrast, large thyroid cancers that have spread outside of your thyroid require more extensive surgery.

So, what if you are a “gray zone”? The decision regarding the extent of surgery can then be determined by what information is available considering known variables, combined with your preference, and certainly the recommendations from your experienced surgeon and endocrinologist.

The decision regarding the use of radioactive iodine

The recommendation to use radioactive iodine (RAI) treatment following thyroid surgery for documented thyroid cancer also can be a complex decision process. As with the extent of surgery, recommendations for iodine use have changed in the latest ATA guidelines. The following variables are among those used in this decision process: what type of cancer, the “staging” of the cancer, which involves size, extent of tissue involvement, extent of outside thyroid tissue involvement, the potential aggressiveness of the cancer, completeness of surgery treatment, and a number of other factors.

The internet tool presents questions to your clinician and/or to you as the patient to provide direction, thereby helping determine the most appropriate decision for iodine treatment.

A sample is provided: