When it comes to medullary thyroid cancer (MTC) treatments and how to apply them, I believe there are many different approaches and viewpoints, including those of the doctors, their knowledge and experience with the disease, as well as the patient and their disease progression.
At the beginning of my MTC journey, I had no idea these guidelines even existed. Once I joined a Facebook support group, I found out about them. I read through them several times. Every new physician I met got the same questions. “Have you heard about the American Thyroid Association Guidelines? Are you following them in your practice with MTC patients?”
I have come across a few of the physicians treating me, who had never heard of them. Some of the ones who had didn’t feel like it would be the right course of action to follow those guidelines.
The Effects of Doctors Not Knowing
After everything I had learned about MTC, following those guidelines just made sense to me, especially when I learned about amazing success stories of patients having lived with this disease for decades – not just surviving, but thriving in most aspects of their lives.
I understand that there is always new research that is published, which can change these guidelines quickly. My goal in questioning my doctors is not to present myself as all-knowing, but I want to make sure I receive the most recent and best care possible.
A large majority of American Thyroid Association Guidelines revolve around patients not just affected by MTC but also by MEN2. In this regard, I am lucky. I have the sporadic form of MTC.
American Thyroid Association Guidelines vs “Dr. Google”
Another reason I am so grateful I found them, was the fact that it contains the most accurate information out there at this time. When I was first diagnosed, I googled to find answers to questions such as life expectancy, disease progression, etc.
At that time, I was finding research from the 1990s, which was the most recent information I could find by simply googling. Life expectancy in that research was less than 10 years. Disease progression was presented as very quick and ruthless. I was convinced that I would pass away within the next 5–10 years. I was convinced I would have a very rough road ahead, one that would end in a very unpleasant death.
Finding the patient-run Facebook support group, where I was introduced to the American Thyroid Association Guidelines, was the biggest blessing for me. Coming from a medical background for my career, having a piece of research that was also peer-reviewed, meant so much to me. It was what I understand, what I was taught in nursing school to look for.
It started to put the pieces together. It gave me hope in a time when I thought there was very little left for me. It seemed like it gave me control again over my life. It gave me something to study. The guidelines gave me back my autonomy.
In many ways, I felt like my knowledge about this cancer that had so rudely interrupted my life had increased exponentially. I finally felt like I had the tools to fight back. Like this wasn’t just simply happening to me.
Importance of the Guidelines to Patients
Now to the reason I wanted to share this with you. Your patients may come into your office knowing about the guidelines. They may come in knowing absolutely nothing about this disease. They may only know what I knew at the beginning, based on google searches.
If your patient does not have access to the guidelines, ask them if they would like them. Some may feel very overwhelmed by the medical jargon, or the research aspect of it. Some might be like me and would love to read them. They may want to have all of the possible information out there to feel like they have a fighting chance.
What I am asking you is to give your patient that option. Connect them with the knowledge they may not have. Connect them with other patients if you have any under your care. It means so much to us to find people going through similar experiences.