Round Four: Medullary Thyroid Cancer Spread

I long to be normal. Just normal. Oblivious. Like I was for 34 years (well, kinda). Some days it’s exhausting to be a mutant. Most days, I get to worry only about my lack of adrenal glands and making sure I take enough hydrocortisone to stay alive. Most days are good and I can feign normalcy fairly well. Every few weeks I have a very strange day or two, often inexplicable, where I feel off, exhausted or nauseated.  Most of the time I get sick a few days later, sometimes it’s PMS, and other times I never figure out what triggered it. I just deal with my adrenal insufficiency. And that’s enough in and of itself.

But. Every six months, there is The Blood Test and The Ultrasound. The doctors check my blood for calcitonin, an indicator of the growth of my cancer. One of the eight lymph nodes in my neck was positive for medullary thyroid cancer after my surgery in 2015, and my calcitonin has bounced around between 195 and 220 since then. Normal would be undetectable. Some people I read about on Facebook have calcitonin in the tens of thousands. Their cancer is in their liver and lungs.

Mine reared its ugly head again last week at my ultrasound. Four new lymph nodes that are suspicious. This combined with my calcitonin increase to 280 is enough to send me running to Houston, Texas. MD Anderson Cancer Center has an endocrine neoplasia clinic where they treat people “frequently” with my disease. I will have to wait until January 18 to be seen, but I’ve been reassured that it’s a slow growing cancer and my numbers are “low” for a medullary thyroid cancer patient. Whether or not it means another surgery remains to be seen, but bring it on. There is also a chance that a successful surgery could drop my numbers into the “wait and watch” zone and give me some respite for a few years (hopefully decades!). Round four (counting Owen’s surgery, which was harder on me than any of mine) will be mine to conquer!

4 thoughts on “Round Four: Medullary Thyroid Cancer Spread

  1. Kristen Foster

    I am glad you will get an appointment with an expert soon. My mom, aunt and uncle and cousins have all been dealing with their MC for years, high calcitonin tests, tumor shows up every few years, surgery. My aunt is being treated at Seattle Cancer Care Alliance for tumors that are not operable due to their location. It has helped shrink them. Thankfully, they were able to get all mine. I just have the joy of having parathyroid adenomas giving me grief.
    If your numbers are that low, chances are you won’t have too much of a problem with it but I am glad you are following up. Thinking of you and praying for you friend.

    1. Kari M. Dahl

      Thank you Kristen! I’m so glad you don’t have to deal with the MTC on top of everything else MEN2a has so generously given us. I hope MDA can be a true “center of excellence” for me, and that your PTH issues are being addressed properly. Let’s chat soon!

  2. Caitlin Nungesser

    I love you. Praying this is the last of it for you – just need to get rid of the last bit and you can spend the rest of your life not having to deal with MTC. So much love and positivity being sent your way.

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