Bridging Gaps in Care and Empowering Patients Facing Thyroid Cancer

Patient Empowerment Network (PEN) is dedicated to helping educate and empower patients and care partners in the thyroid cancer community. Thyroid cancer research and treatment options are ever-changing, and it’s vital for patients and families to educate themselves about clinical trials, treatment advancements, barriers to and disparities in care. With this goal in mind, PEN introduced the [ACT]IVATED Thyroid Cancer program, which aims to inform, empower, and engage patients to stay updated about the latest in thyroid cancer care.

Thyroid cancer awareness needs more visibility for multiple reasons. Thyroid cancer incidence is higher in women with 70 to 75 percent of cases occurring in women. And many patients may not be aware that thyroid cancer is the most common cancer in patients who are age 15 through age 33.

PEN is pleased to add information about thyroid cancer to educate more patients and their families. Cancer survivor Lisa Hatfield interviewed expert Dr. Megan Haymart from the University of Michigan as part of the [ACT]IVATED Thyroid Cancer program.

Thyroid Cancer Disparities and Challenges

Thyroid cancer patients may be impacted by a variety of disparities in incidence, diagnosis, and care. Raising awareness about these disparities can help patients and patient advocates work toward closing disparity gaps. Dr. Megan Haymart discussed the thyroid cancer gender disparity that impacts more women than men. “So about 70 to 75 percent of all thyroid cancer cases occur in women. And this is very similar to other endocrine diseases, especially other thyroid conditions. So hypothyroidism, hyperthyroidism, those are also more common in women. And so we think that the reason for this is probably multifactorial. So one, there’s probably something about thyroid conditions in a biologic level that differs between men and women.”

Thyroid cancer patients may be affected by socioeconomic barriers to care. Dr. Megan Haymart discussed potential barriers to optimal care. “And there’s strong data for thyroid cancer and other cancers as well, that sometimes what’s happening is individuals who are lower socioeconomic status or a minority race or ethnicity are sometimes clustering at low volume hospitals. And so they may not be getting the best care because of where they’re going.”

Socioeconomic impacts on thyroid cancer extend to other disparities too. Dr. Megan Haymart shared about a difference that often goes along with socioeconomic status. “And then related to socioeconomic status, we also know that there can be differences based on education level as well.”

Thyroid cancer may feel more overwhelming for young patients. Dr. Megan Haymart shared the different types of stress that young thyroid cancer patients may feel. “…it’s very stressful especially for younger patients who are at a transition point in their life, related to college, related to starting new jobs, related to starting a family, all their friends are healthy and they get a cancer diagnosis, it can be very stressful and overwhelming. And so if you’re worried, if you’re stressed, that’s normal. Patients shouldn’t feel bad about that. No one should make them feel bad about it.”

Thyroid Cancer Care Solutions and Successes

 Thyroid cancer care is changing and becoming more personalized to each patient and their preferences for treatment. Dr. Megan Haymart discussed how she’s encouraged about the future of  thyroid cancer treatment. “…one that I’m the most excited about with the guidelines is the guidelines are going to emphasize tailored care more and shared decision-making more. And so I think these are key. And so for a lot of thyroid cancer management, there is not one right or wrong treatment option. It depends a little bit on the patient and what their preferences are.

For thyroid cancer patients, it’s important to see care providers who diagnose and treat a high number of patients with thyroid cancer. Dr. Megan Haymart shared her  advice. “…if you feel that you’re not getting the answers that you want, don’t be afraid to get a second opinion…make sure that you’re seeing high volume physicians who see a lot of patients with thyroid cancer. This is for both the surgeons and the endocrinologists, because we know that outcomes are better when individuals see high volume physicians. 

It’s also important for thyroid cancer patients to be comfortable with the  care provider and that the provider is truly listening to them. Dr. Megan Haymart shared her expert advice.  “…if patients feel like they’re being dismissed, if they’re anxious, if they’re worried, if they’re stressed, if they feel like their questions aren’t being answered, you can always get a second opinion or see someone else.” 

Switching to a different thyroid cancer care provider isn’t necessarily as complicated as some patients might think. Dr. Megan Haymart discussed the importance of patients advocating for themselves. “And so I think it’s very important to advocate for yourself and don’t be afraid to look around. And if the center that’s closest to you isn’t the best center for thyroid cancer, and if there’s a better one that’s 30 minutes away, and you’re capable of getting there, I would encourage you to go.

Delving deeper into the patient experience, PEN’s Thyroid Cancer Empowerment Lead Carly Flumer was diagnosed at the age of 27. And though she experienced many challenges through her cancer journey and still does as a survivor, Carly has also discovered new passions as a result of her experience. “…there have many silver linings of having cancer. I found my passion in helping other cancer patients through different avenues, I’ve made friends and joined communities of people who “get it,” and I found new strength in who I am as a person. Learn more and connect with Carly here.

[ACT]IVATED Thyroid Cancer Program Resources 

The [ACT]IVATED Thyroid Cancer program series takes a three-part approach to inform, empower, and engage both the overall thyroid cancer community and thyroid cancer patient groups who experience health disparities. The series includes the following resources:

 Though there are thyroid cancer disparities, patients and care partners can be proactive in educating themselves to help work toward optimal care. We hope you can take advantage of these valuable resources to aid in your thyroid cancer care for yourself or for your loved one.

Thyroid Cancer Patient Profile: Beena Patel

As Beena Patel shares the story of her thyroid cancer journey and path to becoming an integrative medicine professional personified, it becomes clear that she’s making a positive impact to many patients and to those seeking wellness. In her professional life, she works as an oncology physician assistant, holistic life & health coach, yoga teacher, and energy healer. Beena shares the initial feeling that sparked her passion for patient empowerment, “I felt like I’m meant to do this. And I had even more of a fire in me, like I’m going to help people, and I’m going to help cancer patients feel empowered over their care.” 

Beena’s cancer journey began when she was 21 and in Montreal celebrating post-college accomplishments with a group of friends. They were mainly driving to festivities and eating a lot of food. She felt like she must have gained 5 pounds, but found that she had actually lost 5 pounds after she was back home. She was in physician assistant school at the time and told her doctor about her weight loss, which prompted her to check her neck and thyroid. Her doctor said her thyroid felt palpable and decided to do further hormone testing, radiological testing, and an ultrasound. Something abnormal was found in the testing, which was followed up with a biopsy that confirmed diagnosis of thyroid cancer. Beena was shocked with her diagnosis at such a young age and felt unsettled with the timing for it to happen when she had just started physician assistant training.

Traveling back and forth between her doctor’s office and the hospital felt overwhelming for Beena. “It was a lot for a young woman and a woman of color, to see not only how painful it is to go through any type of diagnosis, let alone cancer, and having to feel so alone throughout the process. Also seeing how people do pass you off when you’re a young woman of color, and I would say a woman of any age, but I think women who are younger, trying to navigate life, and figuring out your path. And then you get a diagnosis and you’re like, ‘No one understands me,’ so it was a lot to handle.”

Beena’s thyroid cancer treatment included a total thyroidectomy to remove her entire thyroid gland. Her care team also tested some lymph nodes at that time, but didn’t find anything concerning. “I didn’t get radioactive iodine, but then three years later, I did have a mild recurrence, so they did do radioactive iodine at that time.” Beena is now doing well and takes thyroid replacement therapy to maintain her metabolism and other thyroid-related processes.

Empowering herself has been a vital piece of Beena’s patient journey. She felt like her first doctor on her cancer journey wasn’t really listening to her, so she found a different doctor. “You have to find the right fit. It’s like dating. Don’t settle until you feel like you not only have the scientific background, but the right doctor who has clinical expertise, who you feel has clinical knowledge and compassion, as well as the time to spend with you and to educate you as a patient. Your doctor should make you feel seen, heard, and understood. It’s a relationship that you’re creating with this provider, so it’s very important to find a good fit.” She also feels patient resources like NIH.gov, clinicaltrials.gov, and the Patient Empowerment Network (PEN) website are valuable in the process of patient education and empowerment.

Beena had to start physician assistant school a second time after her cancer became too disruptive, and she felt she became empowered at that time. She went through a difficult breakup about 6 months earlier and was feeling disconnected from her body. Yoga and meditation helped her cope with stress, but she was looking for something deeper. She found a Reiki practitioner in New York City and received a treatment for the first time. “I just felt like I transcended everything that I’d gone through in the last decade. I just felt good and calm and at peace. And so when I felt that, I knew I had to share that with patients, I knew there was something deeper.” After she was at Columbia University Irving Cancer Research Center for a few months, Beena had already started doing patient consultations with integrative medicine, and her patients were very responsive to the consultations.

 “Many patients aren’t aware of Reiki, or they don’t know that yoga is available to them, but I started doing consultations to educate them. They were willing to try something new, since we weren’t replacing the medication.” Beena realized that she had a gift with patients as she was able to bring peace when they were stressed or had a panicked look on their face. She also recalls during her cancer journey that a medical fellow actually lied to her about the diagnosis and seemed uncomfortable in telling Beena the actual diagnosis. “Some people don’t know how to be comfortable with emotions, because they weren’t taught emotional intelligence. And so I learned that when I would go into the room with a patient, I would hold it together even when I didn’t know what I was doing.”

Beena would request that someone else accompany her in the room, like another provider who was more experienced. She would maintain her calmness and return to her center, and she attributed that ability to her daily meditation practice. She would tell the patient to take a deep breath, and she could watch their heart rate decreasing in real time. The patients would become calmer. “So even if there was an emergency, I could hold it until the intensive care unit (ICU) or someone from another department came in to check on the patient, and it’s like we have that power to help people just by being emotionally and mentally balanced.” And when Beena went to Memorial Sloan Kettering Cancer Center, they were more supportive of integrative medicine. “Music therapists would come, and they had yoga nidra (yogic or psychic sleep) at nighttime and Reiki. They had a patient population that was more aware and educated about integrative medicine, so they would ask for it.”

Patients would request to do a technique like yoga or breath work before they went for radiation treatment in the hopes that it could eliminate the need for anxiety medication. “Sometimes it would work and other times it wouldn’t. Some would pass out at their radiation treatment. So we adjusted things to a combination of breath work and meditation and decreased the anxiety medication dosage. Patients loved having that ability to manage their care from an empowered standpoint.” Beena would also run the integrative medication combination by the care team to keep them informed about the patient.

Integrative medicine is at Beena’s core of medical values that use a mixture of Western and Eastern medicine techniques. She helps patients understand the energetic root of the issues that are happening in the body. “I do think in the future there could be more Eastern philosophies, I think we could get back to energy healing and understanding root causes, the ancient medicine that was passed on from our ancestors.”

Beena is grateful that she is feeling healthy and for the different ways that she’s able to help patients. As for her other advice for cancer patients, she recommends advocating for yourself for the sake of your health. “Be open to ask for support. It’s your body and your health. And be open to us for support, be open to ask when you don’t understand something, and let us know about any supplements that you take. If you feel like you don’t have a good relationship with your healthcare team, be willing to do empowered research and go to the person who you feel comfortable with and who you feel understands you.”