Over the last several weeks, I have been contacted over social media by multiple newly diagnosed medullary thyroid carcinoma (MTC) patients. They reached out to me mostly via Instagram, because they had found a post in which I used a hashtag related to MTC.
A theme that came through in multiple conversations was the research the new patients were able to access online. Many of them voiced concerns to me especially when it came to life expectancy. This was also among the issues I ran into at the beginning of my cancer journey.
Before I received the official diagnosis, I had done some research into thyroid cancers. Most of my focus was spent on follicular and papillary thyroid cancers. I believe that since MTC and anaplastic thyroid cancer are so incredibly rare, it wouldn’t be one of the ones I would be diagnosed with if this was going to be cancer at all.
As you can imagine it was a huge shock to find out that it was MTC after all. I frantically started googling everything and anything I could find on MTC while driving away from the doctor’s office. I wanted and had to call family and friends and tell them what the doctor had said since they all knew we were going to this appointment.
Everything I read was very disheartening. All of the research I had access to at this point put the life expectancy at 5 to 10 years at the most. The remainder of the research explained some ideas around the surgery and recovery. There was very little information regarding other treatments besides surgery.
Fast forward 6 months and I was able to connect with a Facebook group with MTC patients. This support was the most helpful as well as enlightening. The group was able to lead me to websites and resources that were richer in information. They also provided research that was more recent than 10 years.
Once I found this group and went back to compare some of this information to what I was able to find on “Dr. Google,” I figured out the research I found was at a minimum 10 years old. Now I was finding things like the American Thyroid Association Guidelines, which were from 2015, meaning they were just over a year old by the time I found them.
Over the last 5 years, most of the new research I was exposed to, had been through the Facebook group and now through Rare Disease Advisor (rarediseaseadvisor.com).
This experience was one of the reasons I decided to share my story very openly and very publicly. It is one of the reasons I started a blog. I wanted to be there. I wanted to be found on Google and shine a little bit of light on all the depressing google results I was finding. I wanted to help people find my story and see that things don’t always have to be so incredibly bleak.
Most of the data I was exposed to after joining the Facebook group, was hard to find in a simple google search. A simple google search is what most people are going to do when they receive a diagnosis such as cancer.
I believe it is important that the research that is being conducted on rare diseases, in my case particularly, MTC, are readily available to patients. The best scenario would be these newer research results being at the beginning of google searches.
It is very quickly overwhelming once a patient makes a google search. You may be able to understand how many wouldn’t make it to the third or fourth or even fifth page of a google search which is more often than not where newer research is found.
I guess what I am trying to say is, keep introducing others to websites like Rare Disease Advisor. The more people use it, the easier it will be to find. Introduce your patients to resources they might be able to find the most helpful and up-to-date information.
Maybe it would be helpful to develop a pamphlet with websites that have the best and most accurate information currently available. Maybe you could share something similar with your patients when giving them a diagnosis. It can be overwhelming at the moment, but they are going to have so many questions once they leave your office.
I am so grateful I was able to find the support and the information I needed to find. I worry about the patients that aren’t necessarily tech-savvy and know where to look for more detailed information.
By the time I was calling my family to tell them about my diagnosis, I was convinced I wouldn’t live 10 years with this cancer. Today, I know differently and have more hope.
Please give this hope to your patients. It is devastating to think you will only have a few more years to live, especially when the newer research states that this is not necessarily the case more often than not.