It’s time. It’s time to find out if my cancer treatment that I underwent in December and January paid off.
For you long-time readers, I hate to put you through this…but there are many new readers so…here’s my cancer story. In December of 2015, I went to a regular annual physical. My doctor was feeling around in my neck she suspected to be nodules (growths) on my thyroid. I went for an ultrasound and yes, my thyroid didn’t look right. I went on and had a needle biopsy. That came back inconclusive. I ended up opting to have my thyroid removed anyway. The nodules were large and I didn’t want to keep going through needle biopsies as that is what I would have had to have done.
The pathology on my thyroid came back as follicular thyroid cancer. WHEW. I was so glad I had it removed. After that, they set me up to take the Radioactive Iodine dose which is the only way thyroid cancer is treated besides surgery. I got a 150 dose.
I went through the protocol, took the pill and we thought everything was fine. NOT. My thyroglobulin tumor marker (blood test) continued to go higher and higher indicating returned cancer. My doctor refused to treat me until the cancer showed up on a scan.
My case was moved on to Mayo Clinic in Rochester MN. I had a doctor I didn’t like and requested a new doctor…I like her MUCH better. Her name is Mable Ryder.
Doctor Ryder explained to me that my cancer was Radioactive Iodine resistant…meaning the 150 dose that I had likely did nothing for me. My cancer didn’t uptake the meds. That left us wondering how or if there would be a way to treat it.
The cancer finally showed up on a scan in the Fall of 2021. I went through treatment. It is a new treatment so there is some risk with it and the results aren’t well known. There was a small chance my cancer could mutate into a worse thyroid cancer. I decided to go through with the treatment anyway. I was the 27th patient at Mayo Clinic in Rochester to have the treatment. They put me on oral chemo (Mekinist) for a month to destabilize my cancer and then gave me radioactive iodine. This time a 250 dose.
The treatment itself was a breeze. The aftermath…not so fun. I had MANY of the side effects making the two months after treatment pretty miserable…but doable. The treatment process is called re-differentiating.
There is no way to really know if the treatment worked until I waited six months and then did some testing.
Monday was my testing day. I was up early and left the house at 6:15 am and headed out for my two-hour drive. The tests were uneventful. I waited for a long time to get my blood drawn. They were half an hour behind but CT made up for it and I was out in a flash.
As I was driving home, I got a notification that some of my test results were in. I pulled over and tried to look for them on my phone but I couldn’t remember my password. I got home and hurried to the computer to try to check the results.
Darn…The only tests that were back were things that really didn’t give me the big picture. Was there cancer still hanging around in me?? My calcium level can’t tell me that. So…I hung out by the computer and wrote blog posts while I waited for the results.
I had a doctor’s appointment Tuesday morning to explain everything to me…but, if I could see my thyroglobulin tumor marker number, I’d know a lot. If I could see the findings of the CT scan, I’d know even more.
Obviously, I’m hoping for the best but honestly, just knowing would be awesome.
The goal is always to have a thyroglobulin tumor maker below 2. If it can’t be below 2, it’s good to have a stable number. Over the course of 6 years, my climbed from below 2 to just under 3000.
I came up with a little scale for myself. First, it was going to be a relief just to know if it worked. But…I decided I would be happy with anything around 3000…showing no new growth. I’d be thrilled if it was less than 3000 meaning we took some life out of the cancer. I would be over the moon happy if I could get it below 2 again….and in the worst-case scenario, if it got worse, I’d be sad but I would listen to the doctor’s explanation. I’d be thankful for the extra time I’ve had because of the steps I’ve gone through so far and learn what comes next so I can make plans for the future.
Whatever the results, I’d have a plan.
At about 5 pm, the computer dinged. I had a message and it said new test results were in. I hurriedly clicked through and found the page with the results and my thyroglobulin tumor marker number was… 11.
I was super hopeful. I called the kids and we were all happy!! But then I started thinking too much trying to decide what it really meant. 11 is awesome…I think.
So…Tuesday morning I picked up Kalissa and we headed to Rochester. We hoped nine would be a lucky number for us.
We did a lot of waiting. My doctor is notoriously very late.
She came in VERY happy. She told us that I had the best results and she was very please with the work the treatment did. The images of my chest CT were promising. All of the tumors had significantly shrunk or were completely undetectable.
At this point, my treatment is considered very successful at this point.
As I said earlier this is a fairly new treatment. It’s passed clinical studies but there is really no long-term data for it. So…she doesn’t know exactly what to expect. She said the real results will be more evident two years from now.
What I know now is that the Radioactive Iodine I took in January will still do some work in my body for up to two years. We are at the 6 month line so possibly my tumor marker could go down.
I will go back in six months. I will again have CT scans and blood work to check my tumor marker…and we will make a new plan then.
We are all super hopeful that this bought me a few more years…there is still a chance this could morph into the “bad” thyroid cancer but, there is more hope that I added on a few more years to my life. We’ll see in time but for now, we are very pleased!! Can you tell by the picture??
Kalissa is truly my best buddy to go to these appointments with. She’s helpful, asks great questions, and helps me retain the information. I couldn’t ask for a better patient advocate. I am so thankful for her.
Many thanks to all of you who have kept me in your prayers or sent good wishes my way. I am thrilled…I have a six-month ticket to live life before I have to put any worries into this. That’s a GREAT feeling!!