My thyroid cancer diagnosis was a journey, not an event. In January and April 2014 I had fine needle aspiration (FNA) tests that were inconclusive and suspicious respectively. By the time I had my follow-up appointment with the second Ear Nose and Throat specialist (who I call ENT #2) I was realizing that my medical treatment was up to me. I was my own best advocate, and I could not rely upon the medical system and the doctors working in it to advocate for me. No doctor was going to place me in a higher priority than I would place myself. Therefore no doctor could 100% tell me what was best for me. I’d made up my mind that my treatment would be my decision. It would be based upon my own research, advice of doctors only whom I trusted, and a gut instinct of what was right for me.
I had been taught by ENT #1 that doctors could be profit-driven instead of patient-centered – he was selling me surgery when we had no idea whether or not I had cancer. ENT #2’s resume was impressive, and he was very pleasant and professional at my initial appointment. When I returned to discuss my “suspicious” FNA results (which gave me a 70% chance of cancer) his demeanor changed. I could easily have missed the change, because it primarily came in the form of concerned advice: Why wouldn’t I want my thyroid removed if there was a 70% chance I had cancer and a simple surgery could take care of it? He kindly gave me the rundown of his surgery availability – he could easily fit me in a few weeks from my appointment. How about Why would I want surgery if there was a 30% chance it was completely unnecessary?
When I turned the tables and began asking ENT#2 questions about his surgery experience he wasn’t so free with his answers. My first question regarding how many thyroid surgeries he had performed in the past year was dodged by him telling me how many overall surgeries he had done. I didn’t even get to my second question about whether there had been any complications from the thyroid surgeries he’d performed. I’d heard enough.
I knew from my research that if I was going to have a thyroidectomy it was going to be with a doctor who specialized in that surgery. ENTs commonly perform a wide variety of surgical procedures from tonsillectomies to nose surgery for allergies to ear drum perforation surgeries, and of course thyroid surgeries. I knew that a good thyroid surgeon would easily estimate the number of thyroid surgeries they’d performed to be in the hundreds or even thousands, and would have no problem directly answering my questions about risks and complications. I also knew that I wasn’t going to have my thyroid removed until I knew it was absolutely necessary.
Once I knew who I didn’t want to perform my surgery, it was easier to spot the doctor I wanted when I found him. Once I defined the circumstances under which I would have the surgery, it was easier to push back when doctors pushed towards surgery, and it was easier to submit to the surgery once those circumstances arose.
Realizing I had to advocate for myself was a huge shift in the way I viewed the medical profession, and it definitely changed the way I approached my thyroid cancer. So did defining my terms. I empowered myself to say “No” when something wasn’t right for me, to fire doctors when I didn’t trust them, and to relentlessly seek the solution that was best for me. The solution included doctors, hospitals or surgery centers, second opinions, testing facilities, and insurance coverage. I pursued them all until I found what was right for me.
Do you have experience advocating for yourself in your medical decisions, career, or relationship? I’d love to hear from you… please leave a comment.