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Embracing life while living with advanced medullary thyroid cancer

(BPT) – The American Cancer Society estimates that about 62,450 new thyroid cancer cases will be diagnosed in the US in 2015. Medullary thyroid cancer represents only about 3 to 4 percent of these cases, and just one-third of those will be locally advanced or metastatic disease.

Lucy Faith belongs to the small advanced medullary thyroid cancer (aMTC) community, and has found ways to manage her condition while living her life to the fullest and celebrating every day she spends with her family.

“I had no idea what medullary thyroid cancer was and it felt like there was very little research being done for the disease when I was diagnosed,” says Faith. “This made it difficult to understand what was going on in my body. I learned very quickly that it was up to me to figure it out and take control of my own care.”

Because there were so few resources available, Faith took control of the situation and turned to her physicians to understand how the cancer was affecting her body and what treatment options were available. Starting with her primary care physician, she was quickly referred to an ear, nose and throat doctor, and then referred to an endocrinologist who diagnosed her with aMTC. 

“As a healthy 38-year-old woman, it was hard for me to believe that I was diagnosed at such an advanced stage of cancer without any indication that something was wrong. The only sign was a weird feeling when I stretched my neck, which led me to feel for the lump in my neck and it was then that I knew something just wasn’t right,” says Faith. “Even though it was scary, I needed to stay positive because I had young children that depended on me. I put that aside and concentrated on my children, and that helped get me through the toughest times.”

At the time of her diagnosis, Faith’s family was already in turmoil; her husband was recovering from spinal surgery and her mother had recently passed away. Compounding the stress, Faith was the only person she knew with a cancer diagnosis, so she lacked a support system who understood what she was truly going through. Because she didn’t look ill, she kept her diagnosis private for a very long time.

Faith found comfort in the small group of family and friends who were aware of her diagnosis. They helped keep her calm and centered by staying positive and telling her that everything would be alright. Rather than focusing on her disease, she set goals focused on seeing her children reach certain milestones, like graduations. Faith concentrated on helping her children achieve those goals, allowing her to remain positive and enjoy each day to the fullest. Today, Faith hopes to provide the same comfort to others going through a cancer diagnosis, which is why she shares her story and experiences living with aMTC.

“Over the years, I have learned to live each day with my disease. While it was difficult at first, I am thankful to be able to help others by telling my story of living with aMTC and being positive, living one day at a time,” says Faith. “Becoming involved in my community and my children’s schools helped to keep me positive and focused on what’s truly important.”

People living with aMTC, particularly the advanced form, often express feelings of isolation and frustration about the lack of information, resources and support. To support families coping with aMTC, AstraZeneca has developed aMTCSupport.com, an educational site with resources for the aMTC community, which features patient stories through first-person and caregiver videos, as well as tools to help navigate the aMTC journey such as questions to ask your treatment team and a guidebook to understanding aMTC. The site is updated and expanded on an ongoing basis to meet the needs of those living with aMTC and their caregivers.

“If you’ve just been diagnosed with aMTC, the best advice I can give you is to stay positive, ask questions and get as much information as you can to make the best decisions about your care,” says Faith. “This helps make your disease more manageable so you can focus on living your life.”

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