From the Patient’s Perspective
Thyroid cancer care is often feels uncoordinated and confusing. There may be multiple care providers involved from first suspicion of something not right through the several diagnostic and treatment phases involved, and it may be several months before the patient meets the physician who will be providing life-long follow up care. Even when being seen at a comprehensive cancer center, the same kinds of support offered to other cancer patients is often not available.
Education is not always provided at the time of diagnosis leaving the patient to speculate and consider the worst possible outcome. As treatment progresses, options for treatment, thyroid hormone replacement and testing may not be offered. Quality of Life studies have shown that patients are often denied acknowledgement and validation of symptoms directly related to their thyroid cancer treatment. Well informed physicians and researchers are taking note of these issues but it can be a long process for changes to reach mainstream thyroid care.
Thyroid Cancer Advocates’ mission is to provide information and tools thyroid cancer patients can use to learn and advocate for themselves, improve their continuity of care and support best outcomes. We are a group of thyroid cancer patients from a variety of backgrounds and experience who are committed to helping others navigate the complex path of thyroid cancer treatment.
Together we can make this journey so much better.
As one patient shared — Thank You so much for getting back to me . I learned in this thyroid journey that nothing is etched in stone. What's good today may not be so the next day. At the very beginning of my thyroid saga I was very naive and knew nothing and I mean nothing about thyroid and what makes it work for a better outcome. I was told to take one pill a day (Synthroid) and I'm good to go . It took me a long time to realise how wrong and detrimental that was . I went through so many symptoms — some bearable but most symptoms made day to day life difficult. Palpitations , insomnia, jaundice, irritable ,moodiness etc. Nutrients that help our thyroid meds work well for us were never talked about even though they are a very large component of our well being. T3/NDT was *Never* discussed/mentioned. My one and only time my surgeon asked me after my TT if I was depressed? I was just the opposite . I was on a high . I guess from surviving the TT.