In the 5 years since my medullar thyroid carcinoma (MTC) diagnosis, I have seen so many different physicians, in many different cities and even different countries. Somewhere along the line, I lost count of how many medical professionals there were working in this field. I also have lost count of how many times I have told and retold my story to doctors, their residents, clinical specialists, nurses, and physical therapists.
I live in Canada, and technically, we do not have a ‘center of excellence,’ a group of varied experts dedicated to the treatment of MTC, in my country. We have a few doctors spread across the country who may know more about MTC than other doctors, but they’re limited. There is no center that has true experts with more than a couple of MTC patients.
I have been to at least 3 different cities in Canada to see these doctors. I have even traveled to Germany. There I had more investigations done and spoke to the medical team. At one point, I looked into going to a center of excellence, such as MD Anderson in Houston, Texas. However, the price tag to get an appointment was something my family and I could not afford. Even with a GoFundMe set up by friends and family, it would never have been enough. We decided to search out other alternatives closer to home instead.
Finding Experts Where You Are
I have been transferred to multiple different physicians and their care teams, even within the cancer center in my city. About 6 months ago, my case was transferred again, due to the facility rearranging departments.
On one hand, this has been the biggest blessing, but on the other also a disappointment. This care team has been the most knowledgeable I have ever worked with in my hometown. The disappointing part is, it took almost 5 years to be transferred to this team and see the most experienced doctor in my own city. The main doctor on the team has been at the center the entire time I have been going there.
MTC Centers of Excellence?
One of the first things many MTC patients will recommend to a new patient is to find a “center of excellence.” As much as that is great advice, for many of us, that just isn’t even an option. Often that means the only other options may be a less experienced doctor, or, in the worst-case scenario, one with almost no knowledge of MTC.
A doctor that I encountered once said, “Oh yea, I think I heard about that sometime in med school,” when I told him I had MTC. Some patients, like me, are lucky to find someone who actually knows quite a bit about the disease without a center of excellence. Because they may not have many patients who are struggling with MTC, in my opinion, their expertise may be quite low. I know this was the case for me.
Be Your Own Advocate
I did a lot of research and interacted with other MTC patients who have felt the same. Often, it seemed like I knew more about the disease than the doctors who were treating me. On more than one occasion, I had to advocate heavily for myself. Since I disagreed with their proposed treatment plan, I felt like the American Thyroid Association (ATA) guidelines and everything I learned would suggest a different approach.
Again, I am lucky that many of my doctors have been receptive to my concerns. Since I started to inform myself more often, there hasn’t been a treatment that was forced on me. I truly appreciate the doctors listening to me.
I have rarely felt simply dismissed by my team. This may also have to do with the fact that I am also a health care provider. Other patients have mentioned to me that they have felt pressured into treatments before. Some have been very strong in advocating for themselves.
Patients often struggle with information overload, especially at the beginning of a diagnosis, and when adding to the mix having to search out your own physician or go outside of your own medical comfort zone. In the United States, it often means going out-of-network, which comes with its own headaches and challenges.
Seek Help to Help Your Patient
I am asking the medical community: if you know a colleague who knows more about MTC than you do, refer your patient to them. If you don’t know if anyone is more qualified, ask around. But please, ensure the provider who is most versed in this treacherous disease is consulting on the team. It will help both you and the patient tremendously.