Post surgery #2, Full-body scan results

This morning I went to find results of my full-body scan to see if I’m cancer-free. Long story short, I’m not cancer-free. Things continue to get more interesting.

Difficult case

For a long time, no one lead me to believe my case was unique, but slowly it has become clear that it is. I learned last week my first surgeon said my case was the most involved he has ever seen, and my new surgeon at University of Illinois at Chicago mentioned in passing a couple times that they have “round table discussions” about my case. Still, no one had verbally told me my case was abnormal until today.

The form of cancer I have is typically one of the most easily targeted in regards to treatment. Most people have surgery, maybe one round of radiation and they’re done. I’ve had two total thyroidectomy and neck-dissection surgeries and radiation in less than a year and there is still remaining tissue.

I went in today to learn if my full-body scan came back clean or if I need another round of radiation. While the full-body scan came back clear, my thyroglobulin level (which is considered a “tumor marker”) was high. Without getting too technical, the full-body scan uses a small dose of radiation (radioactive iodine) to see if anything is left in the body.

Since the scan came back clear, but my thyroglobulin level was high, this means whatever is left, is not responding to the radioactive iodine, and thus radiation will likely not work. Some doctors believe if you give a very high dosage of radiation, the cells might end up responding, but it’s a shoot in the dark.

What does this mean?

Next week I will have a PET CT scan, which uses glucose, instead of radioactive iodine, to identify abnormal cells. We are hoping to identify where the remaining cells are located. However, the catch with this scan is that it only works with decent-sized masses, and will not detect microscopic diseased cells.

So, right now radiation is off of the table (small victory) because it won’t likely work, and if the scan comes back clear, and my thyroglobulin levels continue to be high, I will just be waiting it out until the cells become large enough to be detected and most likely removed surgically again.

New Tattoo

This week I got a new tattoo, and it’s even more fitting now. The bike represents my ride last summer from Washington DC to Cincinnati, OH which lead me to diagnosis, as well as the biggest lesson I’ve learned–life is about the journey, not the destination; the date on the card in the spokes was my first surgery (8-31); and the colors are the thyroid cancer colors.

I’m continuing this journey and writing the best story I can with my life. I’m blessed to be loved so fiercely by so many of you all. Thank you for stepping along side me and remaining near in spirit.

Photo Jul 01, 2 23 33 PM

5 thoughts on “Post surgery #2, Full-body scan results

  1. aimlessjohnston says:

    Praying as the Lord leads. So proud of your positive attitude and faith in the Lord’s sovereignty.

  2. Skye says:

    First of all, your tattoo is awesome! I’d like to get a tattoo related to my thyroid cancer journey someday, but I haven’t come up with one that’s meaningful to me yet.

    I’m sorry you have to wait it out. So frustrating. Hang in there and keep pedaling! (Sorry, I couldn’t help myself with the bike metaphor.)

  3. Jane says:

    Hi Lydia,
    I first found your blog when I was researching thyroid cancer information in and around Chicago. Since I just moved here last November, and by January my new doctor found thyroid nodules (found out there was cancer in both lobes post thyroidectomy), I was poking around the interwebs and found you. I haven’t blogged about my experience much, but since there doesn’t seem to be a large community of thyroid survivors online, I’ve been following your continued story. I have been praying for you, and I know how nerve wracking the waiting game can be. Anyway, thought I should say hello, and let you know you were in my thoughts and prayers, even if we’ve never met. Gook luck, and it seems like your positive energy will continue helping you along the way!

    Peace,

    Jane

  4. Annette Frawley says:

    Hang in there Lydia! You will make it through to the other side of all this as a much stronger woma than you could ever imagine. And you ARE loved by many!

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