Does anyone have any experience of Hurthle Cell Carcinoma. I have recently been told by my Oncologist that I have a 60% change of having this. I am due to have RAI treatment soon and would like to hear of other peoples' experiences of this.
I had the treatment in May. It was fine. The pill was easy to swallow. I had no reaction to it, just sat and read. Lots of showers and lots to drink, sucked sugar free sweets and chewed sugar free gum. The hospital food was abysmal so I was pleased to have taken in supplies. Apparently I’ve got the tall cell version and they think it may have metastasised to my mediastinal lymph nodes (upper chest). So I’ve scans at the end of this month - and the low iodine diet starts next Tuesday in preparation. Oh joy! I hope the treatment goes well for you, keep in touch! x
Just had a phone call this morning from RAI team and my date is set for treatment on the 7th December. So do you have to do the LID diet each time you have a scan @Gold Finch. I guess this will be to see how effective your RAI treatment was. Let me know how you go on. x
I’m having an iodine 123 whole body scan. Actually it’s a 2 day protocol. You have the iodine then have to wait 3 or 4 hours til the 30 minute scan. Then go back the next day for a further 30 minutes, and possibly an additional SPECT/CT for 45 minutes. And of course there are the thyrogen injections on the 2 days prior to all this. (they were fine last time). Oh joy!
Thank you @Gold Finch, I found out yesterday that I need two procedures done in one operation to sort out my voice problems, so have to expect that in the New Year, I was told it will probably be 4/5 months.
It is hard, but I am not worrying any more than I was, it isn't definitely Hurthle Cell, but my main fear will be if the RAI doesn't work which I have read it doesn't always with this particular type. Then I might start worrying what happens next. One step at a time is more than enough to consider right now.
Just to say I found out from my online records that it's tall cell that I have too, or a 60% chance of having it is how it is worded @Gold Finch and it also says uncertain lymphatic and vascular invasion which I don't remember anyone telling me before, but again not 100% certain. I do wonder if they keep some things back on purpose but I would rather know than it coming in dribs and drabs and I wouldn't have known today had I not been look for blood test results which are very slow at being put online this last 2 times. There is no mention of the 2 tiny nodules I was told I had in my lung, and the oncologist said it wasn't on the records, but when I was diagnosed I was told about them and my surgeon also mentioned them, so I just don't understand, unless it was because they are too tiny to do anything with which is also what I was told.
I have 50% tall cell histology. My TT/neck dissection was in February and my RAI in May. I had an ultrasound on my neck on Monday which showed what apparently looked like a 4mm metastasis. The plan for iodine scans next week has been scrapped - I was over half way through the diet in preparation. Instead, an MRI on Monday and a chat with the oncologist on Wednesday. They have already mentioned further surgery and more RAI. Also thyrogen injections on Sunday and Monday and a blood test on Thursday to check my thyroglobulin. There has also been suggestion of possible mediastinal nodal metastasis (on the post RAI scan) and I hope the MRI will look at this too., All rather stressful but I am grateful that the hospital are being so organised even if the speed is a bit disconcerting. To be honest the thought of more surgery terrifies me.
