As someone who had a thyroidectomy and 2 rounds of RAI and still had a recurrence, I'm all about doing all you can to make sure there are no tiny little cancer cells hiding out there. The RAI treatments were extremely uneventful for me (I can't speak for other people) and if it were me, I'd go ahead and do it.
I was hoping for a clean pathology report! I'm so sorry. At least the little monster is out.
Okay, the following is just from my experience: Papillary carcinoma is infamous for having "micro cancers" in other areas of the thyroid tissue. My original papillary carcinoma was 5mm too. Three years after my surgery I had a cancer recurrence.
Had I known then I would have opted for RAI right after the surgery.
My sister's papillary carcinoma metastasized to her breasts even after a TT and two courses of RAI. It took a third round to kill it all off.
My family just has simple papillary carcinoma - none of us had to face the follicular variant. I'm more on the "kill it!" side of the debate now so, if it were up to me I'd have the RAI too. Sounds like your ENT is aggressive - which is *good* with cancer.
Sorry you are now part of the ThyCa club too. :-(
I followed back to catch myself up on your "thyroid story" and it sounds very similar to mine... nodules, Hashimoto's etc. I, too, opted for a total rather than one side. I just got home from hospital today- had TT on Monday. Had to stay because calcium kept dropping and dropping. Better, now. I feel like you are the closest one to knowing what I am feeling right this minute... very sore throat, tight neck, sore all over, but very glad it is over. Since you are a week out, how do you feel now? I will be following your posts regarding how you handle your pathology report. I certainly wish you all the best in making your decision on your care from here. I also hope you continue to get better and better real soon.
I'm with utahmamma on the RAI. I had one cancercous papillary (follicular variant) that was 9mm. I asked my surgeon if it was his thyroid or a family members with thyca would he recommend RAI. He told me definitely. The worst part about RAI is going thru hypohell....and the LID ain't too fun either, but a good way to lose a few lbs.
If I had a TT and was in your shoes I'd do the RAI ... mine was a partial and technically speaking bcz mine was multi-focal (more than one tumor) the protocol suggested having the other side out and RAI.
If Follicular Variant is protocol to have the RAI definitely do it ... regardless of size.
Mine too, were fully encapsulated with no lymph node involvement .. I had two tiny ones ..... reg. papillary .. mine were found during my partial thyroidectomy with orig. nodules being benign.
If I had a TT and they found what you have or what I have I'd f/u with RAI ... hindsight is 20/20 ... why take even the smallest chance?
I agree with the above answers- why take the chance.
I just read your post and I am so confused, my ENT says he feels I am cured,, I had papillary cancer the size of a grain of rice in my right lobe , so the left side was removed a week later and it was OK.,I am getting a copy of my pathology report when I go see him on Tuesday. I worry about this darned cough,,,,,had it since last June...been on all kinds of anitbiotics and it just won't go away.my chest has a funny feeling in it. My ent doesn't feel like he should do anything else for me, I would love the body scan especially since I met my yearly out of pocket expense with my insurance company in January. IF the papillary cancer was anywhere else would it show up with the body scan? I told the DR while I was in the hospital that cancer was cancer it was like being pregnant,,you either are pregnant or you aren't and you either have cancer or you don't no matter what size the lesion is....he doesn't feel that way, he said it was small and feels no need to go further than taking the whole thyroid. After surgery he told my husband he saw follicular cells then when it was sent to a patholigist up north it came back as papillary cancer. I want to see the report to see if it says anything about follicular. Its me with the cancer not him.....I want to be very sure it isn't hiding somewhere else. what do you think?
I have to agree that RAI would be the way to go since if was follicular variant and due to your age! You can do this GIRL! We are here to help you through this all the way! Just lean on us!
so sorry about the cancer but RAI Kill it dead so it cant comeback RAI i9snt nearly as bad as chemo or radiation ask for the thyrogen shot so you dont have to go to hypohell.As Joni said we are here for you. Keep us posted.
I believe a body scan shows where thyroid cells are living in your body, but I don't believe it shows whether they are cancerous or not. Someone please correct me if I'm wrong. I'm new to the whole body scan thing. I understand the scan is given to people before they have RAI so that the doctor knows the dose of rai to give a person.
When you receive your pathology report next Tuesday ask for a copy to take home with you. You can post the results here like I did and experienced people will be able to help you make some sense of it. I would probably push my ENT for the body scan for you own peace of mind. I know my ENT is being agressive and recommending to my Endo that I undergo the RAI.
Please keep us posted!
How are you doing today? I'm 10 days out from my TT and I'm feeling very good. My sore throat was gone by the third day after surgery. Hopefully yours is feeling better now! That was the worst part for me. My sore neck is finally starting to feel better. It was so sore I think from the way I was positioned during surgery. I was hit with bronchitis/cold/flu right after my surgery and it had my fever up for four days. This past Monday was my first fever free day and I've just felt better each day since then. I'd like to get back to my normal routine of running around and exercise, but the doctor told me to wait until next Tuesday (the 2 week mark) to start doing that. So, I'm basically still taking it easy and just doing light things around the house.
Did you have your thyroid removed because of cancer suspicion or for other reason?
Keep us posted!
Thanks for your advice guys. It pretty overwhelming that I should proceed with RAI. I have a few questions if you could help.
Regarding thyroid cells being in other parts of the body. Is that common? Do most people have thyroid cells circulating around in other parts of their body?
Is the concern that these thyroid cells could contain a "micro cancer" of papilliary cancer? Because I have the "follicular variant" is there more of a chance these thyroid cells floating around in my body may contain thyroid cancer cells?
Your help is so appreciated!
Any input on thyroid cells in the body and the chances of them having cancer would be appreciated. I asked a few questions in my above post. I could use some advice if you could share.