Editor’s Note: In this Q&A, Patient Perspectives columnist Christine Pudel, RN, answers questions from her editor. A 30-year-old wife, mother to a son, and a registered nurse, Christine was diagnosed with medullary thyroid cancer (MTC) in 2016 and has undergone 2 surgeries, as well as radiation therapy. Her columns uniquely capture a life with MTC from both patient and caregiver perspectives.

Q: How difficult was it for you to finally get your diagnosis?

It took at least 5 years to get a definitive answer to what was ailing me. Five years and many different medical professionals. I was sent from doctors to therapists, to different specialists, all with minimal success. I ended up switching physicians,  who finally ordered the right tests to find the right answers. 

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Q: Did you have any knowledge of your disease, or even heard of it, before your diagnosis?

A: I am a healthcare professional myself but had never heard about MTC until a
nodule was found on my thyroid. After that, I started researching thyroid cancers. This was the first time I came across MTC. However, given how rare it is, I didn’t spend much time researching it in detail. All I knew when I got the diagnosis was that it was a rare cancer, with very few positive outcomes.

When the doctor told us which cancer it was, I mouthed ‘It’s the worst one’ to my husband. I have since learned much more about it, but at first, it seemed like a death sentence.

Q: Once diagnosed, how easy or difficult was it to learn about the disease, your prognosis, and the treatment options available to you?

A: There was some information available on the internet when doing a Google search. Most of that information made my prognosis look very bleak. What I didn’t understand at that point, was that most of the research available was very outdated. It was at least 5 years old, if not older. 

I am located in Canada, which means we don’t really have a center of excellence here. Being able to get to one, in say the United States, is almost impossible without a lot of money, which was not an option for me. Therefore, getting information from a health care professional who was very knowledgeable about MTC, was also not really an option. The place I ended up finding the most information, was on Facebook in an MTC support group. 

Q: What regular sources of information did you come to rely on?

A: As I just mentioned, after my diagnosis I found most of my information on a Facebook support group, with few other options. Over the years, this group has been where I have found the latest research. The other patients and caregivers on the site are very well informed and closely connected with trials and research, hence why they are able to share the newest results in record time. 

Some of the doctors I have been referred to have been quite knowledgeable as well. They have been able to explain to me more in detail which treatments are available in Canada or specifically for my case. Some have been able to explain details to me that I hadn’t yet encountered, which has been very helpful as well. 

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One thing I would like to mention, though, it took me seeking out these doctors and traveling extensively within Canada to find them. I was referred to another doctor, due to interdepartmental changes, who has been by far the most knowledgeable doctor in my hometown. 

However, this was just recently, after being at this particular hospital since my diagnosis 5 years ago. 

Q: How important is social media as a source of information and inspiration to support you?

A: Social media has honestly been a game-changer for me. I spend the first 6 months after my diagnosis believing I would not outlive 5 to 10 years. This was all the information I could find at the time.  After finding the Facebook support group, I was able to find the American Thyroid Association Guidelines, which were so helpful. I was able to connect with other patients, some of whom have been living with MTC for decades. The longest survivor with MTC that I have encountered on the page was close to 43 years since diagnosis. 

These kinds of stories have been what has given me hope to look forward and try to live life to the fullest. No one can tell me exactly when my time will come, so I believe in making the most of the time I do have. 

Q: Any other insights or information you would like to share?

A: Please feel free to share any other questions you might have about MTC and the experiences a patient goes through. The goal and hope of this column and this site are to educate health care professionals more. We hope that by raising awareness, others might have to jump through fewer hoops to find the information they need or get the proper diagnosis.