Thyroid cancer - undifferentiated/poorly differentiated

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Hi,

 I had a full thyroidectomy in Dec 10th and saw the surgeon on 10th January. I had FNA biopsy in Oct and diagnosed with thyroid cancer but without type due to not enough cells end of Oct  I caught COVID before first initial date of surgery which was 21st November but postponed till 10th Dec provided I was well enough. Actually this is the 3rd type of cancer I am fighting. I was treated for Nasopharyngeal cancer in 2011 chemo and chemo radiotherapy, kidney cancer with removal of left kidney in 2015 and just as I am nearing the end of ten year review for kidney cancer, I am now battling my third one. 

  I saw the surgeon on Friday and she said the tests show indifferentiated or poorly differentiated malignant cells. So I am panicking and very scared. I am waiting to see oncologist, they said within a week or two and then Radioactive iodine treatment.  Obviously internet can send you to a rabbit hole with information. So looking for support and maybe some idea what to expect. They are waiting for further tests to cone back and surgeon said oncologist should know more then. My surgeon found my right Vocal chords stuck to thyroid which she managed to untangle, I lost my voice after COVID and 5 lymph nodes were stuck to thyroid too which they couldn't remove from thyroid. But the lymph nodes were healthy or no signs. Surgeon said they haven't seen any signs of spread but tests did indicate there are some cancer cells in capillaries of thyroid.

   Prognosis doesn't look good for this but am trying to find some strength to  cling on. I was 32 when diagnosed with first cancer and I am now 48. Tbh , I don't know what I am aiming for feel like I am in the dark. Is RAI treatment ok? I am to stay 2 nights at hosp when I do it then 2 weeks isolation at home. Looking for some support and reassurance.

  Thank you and sorry for lengthy post.

  • Hi Starju, I'm so sorry to read your post and that this is the third type of cancer you are dealing with! I can only imagine how exhausting mentally and physically that must be, I find it hard enough dealing with one type! I have a different thyroid cancer variant (medullary) which doesn't respond to RAI but I see you have had a reply in another post, so hopefully you'll get some help and support there. I did want to tag   if he doesn't mind. If I remember right I think he has poorly differentiated tc aswell so might be able to help but I don't know how active he is on the forum. I wish you all the best dealing with this going forward x

    Medullary Thyroid cancer dx May 2023

  • Thank you so much for replying. Did you have to go for RAi still after surgery?

    How are you now? Xx

  • My variant medullary doesn't respond to RAI unfortunately as it's formed by different cells, so it has to be tackled surgically in the first instance. The surgery has to be very extensive as they have to try and get it all out as there's no option to mop up anything remaining with RAI afterwards, like with papillary or follicular.

    Many people have posted about their RAI procedures on the forum, so a quick search on here might give you some reassurance. X

    Medullary Thyroid cancer dx May 2023

  • Hey Starju,

    RIA isn't too bad, they put you in an isolation room, so just take things to keep you occupied, I did have a TV in mine so was ok, they bring meals etc and someone pops in from time to time to measure your levels if they drop faster then you can go home earlier.

    Honestly it's just swallow the tablet and wait, showering etc if levels dropping slower, I didn't have any I'll side effects from it but I had the low dose. 

  • Hi! Thanks so much for replying. It's been clarified that the diagnosis is poorly differentiated thyroid cancer. I hope mine will be plain sailing too. Did you just need to do one RAI?