The day a patient receives the diagnosis of medullary thyroid cancer (MTC), his/her entire world changes. Most will never have even heard about MTC. They will have no idea what to even make of the diagnosis. Some will leave the doctor’s office and start googling for answers right away.

The Google Rabbit Hole

This can often lead down a deep rabbit hole, leaving the patient with more questions and fears than ever. At least that is what happened to me. I had skipped over MTC in the research I did before receiving my diagnosis. Now I tried to find ‘quick’ answers after leaving the doctor’s office. Some of which was so I could answer questions I know my family and friends would ask, which is what happened as soon as I shared the news with them.

Mostly, I was looking for things like what MTC was, as well as life expectancy, the treatments I would have to go through and looking into who I would have to see in the future. The information I found was very discouraging.

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Looking back, I now realize this was due to much of the research I came across being quite old. The newest articles I could find on the fly were from the early 1990s.

Having to Tell Friends and Family

I convinced myself my life expectancy would not be longer than 5-10 years based on the information I had, which was my state of mind when we made the first phone calls to talk to family and friends. From the surgeon I already knew that I would have to have surgery, and soon. He mentioned that we would have to do a right neck dissection as well. This was due to a suspicion nodule visible on the ultrasound on the right side of my neck.

That was the extent of what I knew though. I didn’t even know what kind of questions to even ask in that first appointment. My brain wasn’t functioning well enough to come up with questions.

The next few days, the questions were just flooding through my mind. Not just questions like ‘why me?’ and statements like ‘I am too young for this,’ but also questions about what was next and what to expect as I started on this journey.

I tried to do more research to learn more about a disease I didn’t even have an inkling about. I searched for a support group for patients like me, without success at the time. At one point, I just resigned myself to the fact that I would only know what I learned in my first couple of days. At least, that was, until I would  be referred to an oncologist who might be able to answer questions for me.

Going Along

Between getting my diagnosis and actually seeing an oncologist, 2 months went by. It was 2 months of sitting on pins and needles, wanting to finally talk to someone who knows this demon of a disease… someone who could at long last answer all the burning questions plaguing me and keeping me up at night.

When I did get to our local cancer center, I didn’t see just any oncologist. I was directly referred to a radiation oncologist. If I had known then what I know now, I would have asked to see a medical oncologist first. I felt at this moment, I didn’t have enough knowledge to advocate for myself properly. I was just going along with what doctors told me, believing that they knew best.

Years of Research

After years of research, I found a Facebook support group. There I found the MTC guidelines. This gave me a better understanding of the disease. Now, I have a better understanding of which treatments are recommended and in which order. I understand finding a center of excellence or at least someone who is very well versed in MTC is one of the most important things a patient can know.

Looking back at those first 6 months after my diagnosis, I believe some of my treatment choices would have been different from both a medical perspective, as well as from my own perspective. 

As a patient, I would have wanted to have more information. Being given all of the options available to me would have been beneficial. I wish I would have been referred to a physician who knew about MTC. I wish the physician who cared for me had been more knowledgeable.

Maybe there is a way that patients can find this information easier. Perhaps there is something physicians who are tasked with sharing this life-altering news, could give to patients. For me, that was finding a support group on Facebook. Although it is not medically regulated, it is where I found the most accurate information.

It took me 6 months to find it, however, even though I searched for it shortly after leaving the doctor’s office. It is where I was given the American Thyroid Association Medullary Thyroid Cancer Guidelines. They have been the most helpful to me in understanding my disease. It has helped me to become an advocate for myself. It has helped me challenge the physicians I work with. Since many of them had never heard about these guidelines.