I was diagnosed with Stage 4C Medullary Thyroid Cancer in September 2020. There is no stage past 4C.
2020 was a bad enough year already, but I had to ask: "What else could possibly happen???"
I had a physical in September 2020 at the urging of my partner Gretchen because she was concerned I hadn't had one for many years. The doctor found a lump on my thyroid and sent me for an ultrasound. The endocrinologist performing the Fine Needle Aspiration (FNA) biopsy said "Oh it's solid, that's not good" and it confirmed in my mind at that moment that I had cancer.
I had a PET scan and the technician told me she saw activity in my spine, meaning metastasis. I still hoped for the best and that it was something else. How could thyroid cancer jump to my spine?
Gretchen asked a doctor she knew for a referral to a good Oncologist for thyroid cancer and we met with a Medical Oncologist at Methodist Hospitals Frauenshuh Cancer Center. Neither Gretchen or I recall who was the first person to tell me that I had cancer and we met with this Oncologist to figure out what I needed to do. Unfortunately I wasn't happy with this Oncologist but she did recommend that we see another Medical Oncologist at Mayo Clinic in Rochester that was more familiar with MTC.
We went to Mayo, not knowing there would be a days worth of tests the Oncologist would want to run. I had a biopsy done on my T8 vertebrae (they drilled into it to pull out a sample) without any sedation, only Lidocaine because I had eaten that morning.
When they ask you "What is your pain right now, on a scale of 1-10?" I now know what 10 feels like!
I had a different type of PET scan, an MRI and lots of blood tests. I still didn't know how bad or good things were, we had to wait till after several of the tests to meet with the Oncologist again. Before we met with him again, I got a notification on my Mayo App that test results were ready. I could scroll through the PET scan on my phone, and I broke down crying when I got to my T8 vertebrae and there was a huge glowing ball of color. I knew what that meant.
The Oncologist told me that I was Stage 4C, incurable. We would treat symptoms and when I was end-stage maybe I would go on Chemotherapy if I wanted to live another month or two, but no Chemo would actually help me.
I then received radiation on my T8 vertebrae and decided to change my Medical Oncologist to one near my home at Minnesota Oncology. He hadn't treated MTC before but knew the Oncologist I saw at Mayo and would consult with him.
We then went to MD Anderson in Houston to make sure what we were doing was right. They were more thorough and found suspicious nodules in my lungs, we aren't sure if they are MTC or not. The Oncologist there said that I need to stop taking the Sandostatin and Zometa that the Oncologist at Mayo prescribed for me: they would have no effect.
I stopped taking them, but not soon enough. Sandostatin causes gallstones, I spent two different days in the ER and finally had my gallbladder removed. I'm currently on no medication, we are watching and waiting until my cancer starts to grow.
Thyroid cancer is often detected late because the person can have few symptoms or symptoms that don't seem like something bad is going on; like my symptoms were.
Medullary is a very rare type of thyroid cancer and I have a rare mutation that doesn't respond to any current chemotherapy, so there is no treatment that will cure me. It has currently metastasized to 5 of my vertebrae, both sides of my hips and small nodules in my lungs. A PET scan revealed "innumerable" smaller metastasis throughout my skeleton.
I have seen 4 separate Medical Oncologists and different institutions and they have all said the same thing: "Nothing we can do will extend your life."
The two MTC markers that are tracked are Calcitonin and CEA. My Calcitonin pre-op was 6,300 if your Calcitonin is over 100, you have MTC. My CEA was only 1, which is normal. After surgery and radiation, my Calcitonin has dropped to 4,100 and is slowly trending down which is great! My CEA is very slowly trending up and was last at 3.7 where 0-3 is normal.
I've read several papers on MTC and the 10 year life expectancy when diagnosed at stage 4 is not good. Most papers or sites say about a 20% survival rate for 10 years in my case. Thankfully for me though, my calcitonin is trending down which indicates new metastasis are not growing and my CEA is extremely low since it's expected to be over 200 in a case like mine. Since my CEA is so low, that is a very good indicator that my disease is not extremely aggressive.
It's been 1 year since diagnosis, we won't know how long I have until my Calcitonin and CEA start to increase rapidly and so far my metastasis have all appeared to remain stable (not grow any larger). My next Calcitonin and CEA check is in one month, I'm expecting my Calcitonin to trend slightly down and my CEA will probably be slightly up. A dramatic increase of either would be of major concern!
I'm planning on making the best of however much life I have left and I'd like to help others that are in the same situation as I am if I am able. If I can save one persons life by having them get diagnosed at Stage 1 instead of 4, I'd be incredibly happy.
I love cycling either on my mountain bike or road bike and there are no ride events to raise money for cancer research/awareness in Minnesota that I can find (I tried contacting The American Cancer Society and others) so I made one! The 2021 ride event had it's ups and downs alright... but it was a learning experience and I'm hoping I reached a lot of people.
Starting in 2022, I'm going to start to ride across every State in the country from West to East. My inspiration for this is Terry Fox https://terryfox.org/ and if I have 10 years, that means 5 States per year which is a tall order for an average cyclist like me!
I'm working on getting sponsors to help with my ride and to help spread the word. I'd like to leave a positive legacy behind, if I am able.
Thomas Drayton - President, No Thyroid No Problem, Inc.