I have thyroid cancer

Tuesday, April 17, 2012

I have thyroid cancer. Doctors call this the good cancer. If you're going to get cancer, it's the one to have. I don't agree with them though.

This blog entry is long, so I apologize in advance. I haven't wanted to talk about it much, but now seems like a good time as I am preparing for the next big step in my treatment.

Back in Sept I saw my primary dr for a high blood pressure & diabetes check up. She saw a large lump on my neck that I didn't even know I had. I use a puff in the shower, therefore don't rub my hands on my neck. In retrospect I should have seen it in the mirror, but it grew so slowly and I had gained a little weight so I thought I had gotten a fat neck. I had an ultrasound in October that showed the mass measured at 4.7 cm. I was sent for a fine needle biopsy right before Thanksgiving, which came back negative. The ENT/surgeon said it had to come out anyways due to its size.

My surgery was Jan 24 to remove the left half and the center isthmus. While under, the removed tissue was sent to the in-hospital lab and they froze & tested a sample of it (called a frozen slice). It was negative, so he closed me up. He said the lymph nodes and everything else in my neck looked great. If it had tested positive he would have removed the other half. A few days later he called me to tell me that the final pathology came back positive. I wasn't expecting that at all. He feels confident that he got the entire tumor in the first surgery but to proceed with treatment I needed to have the other side removed. My surgery was scheduled for 2 weeks later, but then was cancelled because I got sick. It was rescheduled for March 6. I did better with that surgery & recovery than I did with the first one. My oncologist told I am a stage 1. If I was 45+ years old, I would be a stage 3. I was told this right before my 44th birthday, so the age closeness does make me a bit nervous.

I had to wait a while to heal before doing the next step. I had been placed on long acting thyroid hormone while waiting for the second surgery. On March 15 I was switched to a short acting version while my body had to withdraw from the long acting (6 weeks). I've been off the short acting since Thursday and have to go hypothyroid. Last Monday I started a low iodine diet (LID) to also prepare. Thyroid tissue uses iodine, nothing else in the body so now I have to starve any remaining thyroid fragments of iodine for 2 weeks. When my thyroid stimulating hormone (TSH) is >30 I can begin the treatment phase. I go for a blood test on Thurs to see where I'm at. Most people aren't ready in one week, so I'll go back on Monday for another blood test and was told there would be a good possibility I'd be ready then. If I am, they order a radioactive iodine (RAI) pill and I go back a day or two later to take that, then go back a day or two later for a whole body scan. During that scan they are looking at how much thyroid tissue got left behind as well as any spread elsewhere in the body. There are so many important, fragile things in the neck that the surgeon can't remove all of the thyroid and fragments are left behind. Based on scan results, a large does of RAI is ordered and I go back a few days later to take that. Since I am starving the thyroid fragments from iodine, when I take the RAI the fragments will be hungry for iodine and soak it up better than if I hadn't done the diet. I'll be inpatient for 2 days because I'll be radioactive and it's not safe for the kids & pets. After I come home, I'll have to isolate myself in the master bedroom for another 5 days or so.

I'll feel bad while hypo with symptoms such as fatigue, brain fog, sluggishness, forgetfulness, slow reaction time, and I won't be allowed to drive. The RAI will most likely cause extreme nausea from days 2-4, or so. There can be other issues, but they seem to vary by person. A few days to a week later (still have to get exact timeframes) I'll go back for another scan to see how well areas absorbed the big dose. I'll be allowed back on my long acting thyroid hormones 24 hours after I take the RAI. It will take a week or so to come out of the hypo state but can take from 6 months to a year to get the right dose for me.

Unfortunately, this is pretty rare. 95% of thyroid masses are benign. Of the 5% only 3% of those get the kind of thyroid cancer I have. I don't have actual numbers but it is considered a rare disease. My oldest daughter has a rare syndrome, there are less than 500 people in the world with her syndrome. So with 2 rare diseases in this house, one would think I might have a shot at winning a lottery. Nope, not a penny in the Mega Millions, lol!
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Member Comments About This Blog Post
  • KANOE10
    I will keep you in my prayers.. My mother-in-law had the same thing and lived a long healthy life. I hope your treatment helps you. emoticon
    2224 days ago
    Thank you! I'm hopeful I get at least the TSH result today as I was told that if I was there before 8:30 they would have the result the same day. I guess I'll find out if that's true or not. I have Hurthle Cell cancer.
    2227 days ago
    Keep us posted on your results. I know it will be a few days, but we all want to hear.

    What type of Thyroid Cancer do you have? I would like to look it up and know more about it. I am lucky to have the least invasive.
    2227 days ago
    Thank you! I leave in a few minutes for my first blood test. Keep your fingers crossed that my TSH is rising as it should.
    2227 days ago
  • DAJ72705
    Thinking of you!! I am glad you are able to talk about it. You know I am a text away whenever you need to talk!
    2227 days ago
    You can beat this. You are so brave and strong and I am so proud of you. We are all here for you, fighting together. emoticon
    2227 days ago
    Thank you! It is very treatable, but I happen to have a variant that is a bit more aggressive and may or may not absorb the RAI. If it doesn't absorb it, then I may have to undergo a different protocol as it would be harder to get rid of any of these cancer cells.
    2227 days ago
  • SYZYGY922
    I'm so sorry you're going through this right now! Even though thyroid cancer is very treatable (from what I hear), it's so dismissive to call it "good" cancer! I wish you the best during your treatment and recovery.
    2228 days ago
  • ANGELA12372
    I am so sorry that you have to go through this. I will be keeping you in my thoughts and prayers!! I truly hope everything goes well for you. emoticon
    2228 days ago
    Sorry to hear about your diagnosis, but hoping all goes well with the treatment!

    2228 days ago
    Thank you everyone for your kind words & support, and thoughts & prayers!
    2228 days ago
  • DOCHAS79
    Good to hear you still have a since of humor left. Prayers are with you. Hang in there.
    2228 days ago
    As many have said before, we are all so sorry that you have had to join our little group of Thyroid Cancer Survivors. Note that I said SURVIVORS. You can beat this and deserve to be well and strong.

    I am holding you in my heart as you learn to cope with the body changes and challenges coming your way in such a surprising manner. A real shock to the system on so many levels. I know you have a battle ahead of you and you will be in my heart and prayers as you fight this monster.

    You are in my prayers right now. Some for comfort, others for strength, and still others for quiet moments.

    My Spark Friends have been my very precious support as I have walked down this difficult path for the last 2 years. Please be sure to reach out to us when you are down. We do understand better than anyone what it is like.

    Don't forget that there is no good cancer. That is not true and unkind to say. The Thyroid Cancer group here in SparkPeople saved my mind so many times. We understand and want to listen and support you.

    We will walk this path together. emoticon
    2228 days ago
    so sorry you are having to deal with all of this. I agree with you, NO cancer is a "good" cancer!! I hated it when docs told me this after my diagnosis. wishing you well! I'm 2.5 years out of surgery and RAI. my cancer took up my entire left lobe and spread to lymph nodes. you can beat this and look at it this way......you'll have lots of time for yourself during the isolation period.
    2228 days ago
    Thanks for sharing. I have had a benign growth on my thyroid for years and this is always in the back of my mind, especially since my sister has just been diagnosed with thyroid cancer less than a year after her breast cancer diagnosis.

    Best wishes for healing!
    2228 days ago
    You are one brave lady!

    Thank you for sharing your story with us.
    All the best to you on your journey...

    2228 days ago
    So sorry to hear about your health struggles. I hope and pray all will soon be well - sending hugs your way!
    2229 days ago
    Hugs and prayers. It's so hard to deal with the symptoms of hypo. I have Hashimotos hypothyroidism and know all the symptoms you're speaking of!

    Wishing you a healing journey.
    2229 days ago
    Thank you for sharing. I am sorry to hear about your diagnosis and troubles since then. Hopefully, the doctor is right in being optimistic. If you feel like it, keep us posted. I'm sure I speak for many when I say that we are here for you. Keep your head up, stay strong, and keep fighting!
    2229 days ago
    So sorry to hear about all the trouble you've had recently with your thyroid. sounds like you're dealing with it well and just the fact that you blogged about it today means you are starting to adjust to the situation better. I am also hypothryroid and know what you mean about feeling sluggish! Before I started taking medication I thought my body forgot that I was still alive! Stay strong and the worst will be over soon and then you can start feeling more energetic again.
    2229 days ago
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