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J9BND48
J9BND48 Member Posts: 5 Member
edited May 28 in Thyroid Cancer #1

Hi, folks!

I found out two weeks ago that I have papillary carcinoma. Of course I have been scouring the internet for information. I have an appointment with an ENT specialist a week from today and will hopefully have a surgery date set ip at that time. I would appreciate any suggestions, tips for preparing for whats ahead of me from those of you who have already been dealing with this. I hope to be a source of encouragement for you and receive the same. Thank you for any info you can offer.

Comments

  • big G
    big G Member Posts: 177 Member
    #2

    I would say to go to the best treatment center, teaching hospital, that is within your area and means. Probably have further testing for staging. You likely will have a total thyroidectomy. Any other test or treatment will depend on the staging. Trust in your faith, family, and friends. You will get through this. Take it one day, one week at a time. Come back if you have any further questions that I or others may be able to help with.

  • Miles' mom
    Miles' mom Member Posts: 45 Member
    #3

    DITTO and well said, big G.

    You may be in for the long haul or it may be removal and done. GOOD doctors that you trust explicitly. Family and support. Most importantly, Almighty Lord and Savior.

    FAITH over fear.

  • GolfKeith
    GolfKeith Member Posts: 7 Member
    #4

    Give yourself time to heal. I had the right lobe removed in February for PTC. It took a good 3 weeks to get back to "normal". It's not debilitating, but I would hit a point just about every day where I was just exhausted and needed a nap. The experts want to tell you back to normal in a matter of days, but it took me a lot longer. Just know this surgery is serious business and your body needs time to figure out what is going on.

  • J9BND48
    J9BND48 Member Posts: 5 Member
    #5
    https://csn.cancer.org/discussion/comment/1715460#Comment_1715460

    Thanks! Wise words.

  • good_alison
    good_alison Member Posts: 1 *
    #6
    https://csn.cancer.org/discussion/comment/1715460#Comment_1715460

    Yes! I drastically underestimated the time needed to heal. I also didn’t realize so many people have calcium problems after TT. I was expecting that to be a remote possibility, but temporarily low calcium levels are apparently not uncommon. I was diagnosed with papillary thyroid cancer 3/15/24 and had my thyroid and 13 lymph nodes removed 4/1/24. I spent two nights in the hospital due to low calcium, and then about a week later was able to return to light work as long as I didn’t need to do anything else. (No real housework, no cooking.) The initial fatigue is real and in those first few weeks after surgery, my hormones were crazy. My body temperature felt “off” a lot, my energy was non-existent, and I felt randomly very emotional. I’m feeling a lot less off all of that now after 6 weeks of being on thyroid hormone.

    I don’t need RAI so I’m done with treatment for now, but have needed continued blood work (weekly the first month or so, now monthly) to check calcium. I take pills 5 times a day between the thyroid hormone, calcium and calcitriol, and the stuff I was already on. Getting a pill container that holds four doses per day for a full week helped decrease my anxiety over my new routine. I will also be getting periodic ultrasounds on my neck and I hear that’s mentally stressful.

    My energy level is more consistent the past week or two, but I’m certainly not yet back to where I was before TT.

    There is a lot of good info online, but these were the things I didn’t quite expect from this experience. Hopefully everything goes smoothly with your ENT and you’re on the other side of surgery before you know it.

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