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Getting the rug pulled out from under me

On Monday, day two of my non-leap year birthday, I posted the following on my facebook page:

Day 2 of my "un"/"fake" birthday and so many more b-day wishes...thanks everyone! And the great news of the day: I got the results today of my thyroid cancer scan, and it was clear! Lovin' the cancer survivor thing much better than the cancer patient gig. :)

I received lots of supportive comments and "likes" on this Facebook status. Man, I liked this status!

Apparently I "jumped the gun" a bit in the good news about my test results. The whole body scan was, in fact, clear. However, my blood work is elevated/abnormal/stinks.

I spoke with Dr. Pun on the phone mid-week regarding this strange thing: that the whole body scan is clear yet the blood work, thyroglobulin, has been and continues to be elevated. I found a medical journal article online that says the blood test is the more reliable of the two, and that it is possible that these two tests could have differing results for a very small percentage of patients. Dr. Pun agreed and confirmed this.

My concern: my recurrence in winter 2008 was first indicated by an elevated thyroglobulin level.

Next step: PET scan on Friday, March 19. I have had this test previously in April 2009. Based on those results, a few things could happen:
  • wait six months and do another blood test to see if it elevates more if there is no change on the left side from the April 2009 PET scan.
  • another radioactive iodine treatment similar to what I had done in September 2008 after the first surgery, whether it changes or not.
  • if it has grown, biopsy/possibly surgery and/or radioactive iodine treatment.
The PET scan is that fun test where I can't have any sugar, carbohydrates, or caffeine for 24 hours before. The tech said really only proteins, green vegetables, and water. Fun! They give me an IV with some sort of dye that morning then have the scan.

Cases of recurring thyroid cancer (more than one recurrence, multiple surgeries and treatments, could almost call it chronic) happen, although by far not the usual. Is this my new normal with thyroid cancer? I don't know. All I really know is that nothing about my thyroid cancer diagnosis has been normal, now has it?

I'm doing fine with this news, just more aggravated than anything. Luckily I've been so busy this week to distract me from really contemplating the "what ifs." Bottom line: I've done it all before, from the PET scan to the surgeries. No surprises there at least.

So just kidding....I'm not quite done with this thyroid cancer stuff yet. Hopefully soon.

Comments

  1. HDMarch 6, 2010 at 12:02 AM

    Dear Charlcie,

    I so understand what you're saying. My thyroglobulin was near zero, but my scan showed an uptage twice now. It is so confusing when one value is OK, yet the other is not. - My doc thinks it is a bit of saliva that shows during the scan (probably trapped in a bit of scar tissue from the surgery). Like you, I hope it is nothing to worry about, but I need to repeat the scan in a few months again.

    Hugs to you! Hang in there!
    HD in Oregon

    ReplyDelete
  2. MindyMarch 6, 2010 at 12:50 AM

    I'm so sorry to hear about the blood levels. I have really been praying for you to be all clear.

    My surgeon said something you might have heard before, "Consider this more of a chronic disease. You will die WITH it, not FROM it."

    My second "batch" was detected from high thyroid antibodies, but no uptake, then found by PET scan.

    Third time I had an increase in TSH, then found with sonogram and PET scan, by no uptake again.

    Those little cancerous nodes are sneaky and inconsistent. Hang in there!

    ReplyDelete
  3. UnknownMarch 9, 2010 at 9:10 PM

    HD, thanks so much for your support! It seems you had the opposite of me, the zero thyroglobulin and scan uptake. Isn't it all so confusing? I feel like I need a medical degree, and I'm not sure that would help.

    MommaMindy, interesting about your second batch of thyroid cancer. I wonder if mine will show up on the PET scan? It is scheduled for March 19th. Sneaky and inconsistent thyroid nodules...I agree!

    Now I'm going to your blog to see about your results!

    ReplyDelete
  4. PattiecakeMarch 10, 2010 at 12:08 PM

    Charlcie,
    Sorry to hear about your confusing results. It must be aggravating for you. I will be praying for a clear PET Scan for you next week. Best of luck!

    Pattie
    Colorado Springs

    ReplyDelete
  5. Tricia Creates!March 11, 2010 at 9:35 AM

    So does that mean steak dinner the night before? We could have fun with this..steak dinner before your pet scan ?

    ReplyDelete
  6. hollybfMarch 11, 2010 at 5:48 PM

    Hang in there cousin! Love you!

    ReplyDelete
  7. Dear ThyroidMarch 21, 2010 at 9:07 PM

    Hi Charlcie.
    I´m so sorry that you now have to go through all that again.
    Hopefully your blood levels are elevated for some other reason.
    You´ve fought this fight before and I am sure you can fight it again,but I sincerely hope you don´t have to.
    Hang in there!

    ReplyDelete
  8. AnonymousNovember 26, 2010 at 7:40 AM

    I can relate to Charlcie's situation. I also have elevated thyroglobulin after 8 months since I received a radioactive iodine treatment last March 5, 2010. My tg level is 30 per my doctor and now I have to do another ultrasound to detect if I have remaining metastasized lymph nodes in my neck since I don't have thyroid anymore. Then my doctor mentioned about if nodules are suspicious, I will have biopsies again, and possible surgery again. If nodules are benign, I will have the pet scan to find any remnants of cancer in my body as maybe indicated on the high thyroglobulin test result. I am so petrified and mad at the same time. I am an older lady of 59 y.o.

    ReplyDelete

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