After my initial surgery medullary thyroid carcinoma (MTC), the next treatment I received was radiation. Before I started this course of action, I met with a radiation oncologist.
This meeting was interesting. I was still reeling from having been diagnosed in the first place. Still healing from my surgery, which was more invasive than anticipated. I still couldn’t turn my neck from side to side. And there were still a million questions on my mind that no one was able to answer yet.
Because my diagnosis and surgery happened right before summer vacations, I fell through the cracks. It took over 2 months to finally get an appointment at our local cancer institute.
Once finally there, I was told I needed radiation. It wasn’t presented as an option and it wasn’t fully explained. Other options were not presented; it was simply told to me that this was what was going to happen.
Let me make something clear. If I had known then, what I know now about radiation and MTC, I would never have agreed to this treatment.
Leaving that initial appointment, I felt overwhelmed. I felt unheard. I felt the doctor didn’t care about my concerns. He wanted me to stop asking questions and go along with what he had planned. But I was filled with so many questions. Many of them were focused on life after treatment.
I remember asking a specific question concerning what the radiation might do to my scar and its appearance. I understand the visual look is not that important. However, I was 25 years old. I had a massive scar from ear to ear; was it really that hard to believe that I would want to prepare for what my neck may look like?
The answers I got from the doctor were either no answers at all as if to brush me off, or along the lines of “that’s not my concern right now. My focus is your disease and fighting it.” While I appreciate the fact that he focused on my disease, my decision to go along with radiation may have been different if I had fully understood all of what radiation meant. Not simply because of the scar but the many other side effects that weren’t explained to me.
This wasn’t the only time that I felt my doctors weren’t listening to me. Multiple times during the 5 years since my diagnosis, I had conversations with doctors who tried pushing me to other treatments. Often I had to bring up the American Thyroid Association’s Guidelines, as well as my previous experiences, to get my point across.
In the MTC patient community, we call this “driving your own bus.” I am glad this was advice I received as soon as I joined the Facebook group, shortly after finishing radiation treatment.
One doctor around 4.5 years after my diagnosis said to me, he was glad I didn’t agree to systemic therapy when they offered it to me. In his words, it probably extended my life expectancy by quite a bit of time. This would be due to the fact that my tumors are currently growing slowly and now I have more options down the road when things change.
Doctors need to understand that when patients walk into their office, they are scared. To be more specific, they are most likely scared for their life. Sometimes terrified is a better way to explain the feeling. Some questions might sound absolutely ridiculous or completely irrelevant. For your patients, however, those questions could mean peace of mind.