Second operation

Hi

I'm afraid I can't answer your question but I noticed that your post had gone unanswered. This may be because the site was experiencing technical issues at the weekend which meant that some posts didn't appear in the group's activity. By replying to you it will bump your post back to the top of the page where someone with the experience you need will hopefully see it and be able to reply.

x

Hello Alys

I've not heard of thyroid cancers being so 'selectively' responsive to iodine but it's actually quite difficult to know whether the initial  RAI has been effective or not. You see after surgery there can still be remnant thyroid tissue in the neck and around the thyroid bed and there can be both healthy thyroid cells and cancer cells 'at play' when you have the initial RAI. You 'could' (and I'm not saying you do - just talking theoretically) get a good response on the gamma scan from the healthy cells picking up iodine without spotting that any remnant cancer cells weren't picking up. Hence, if there were a bit of cancer in the spot where you now have the lump and if it were not reacting to the iodine, you could still see pick up on the scan from the thyroid bed without seeing the node light up.

Alternatively, the new node may have grown quickly and not have been present when you had the scan.  So perhaps it will still pick up iodine. It's hard to say. 

I know of at least 3 people who have been put through the radiotherapy route after it was believed that the iodine wasn't working, and I have to be honest with you that it's not a pleasant experience but it can be effective. In your shoes, I think I'd want a small dose iodine scan repeated just to be sure it's really not picking up before going for full on external beam radiation. I would suggest to challenge your docs on why they think the iodine isn't working and keep asking until you're happy with the answer. 

Hi both,

thank you for your replies. Barbaral, I had a tester dose of RAI last week, my oncologist doesn’t seem positive that it will be reponsive as it sounds as though the beginnings of this cancer were visible on the last uptake scan but was not lit up. It is all very confusing! Keeping my fingers crossed that it is not the case and can repeat that treatment rather than radiotherapy. My operation is next week so hoping to get some more answers soon. Thanks again, Alys 

Hello again

Right, that's brilliant that you already had the scan - seems you doc was thinking the same way I was and doing their due diligence. 

Hi Alys R

i hope your surgery went well and you are recovered. Just wanted to know how you got on did your docs decide to do radiotherapy ? 

I have had a total thyroidectomy and two neck dissections followed by rai.   The second neck dissection showed all lymph nodes were clear even though the fna showed papillary carcinoma.   After my rai my scan showed no uptake  cns said that was a good sign   My TSH is 0.1 and tg is down from 59 after first surgery to 5.5  anti tg is 25.7

recently I have been getting muscle aches in my neck and I now have another enlarged lump on the right side   I am going for fna and ultrasound on Monday but my concerns are is it possible that radio iodine  did not work for me

Hi Rosegirl

the neck dissection went well thank you. I am nearly recovered now- apart from a sore shoulder, I also have a lip droop on the right side, did you get this after your surgeries? 

The lab results came back a few weeks ago and they had removed 69 lymph nodes, 7 were positive for papillary thyroid cancer and 3 of them had split (it is called extracapsular tear). I start radiotherapy next Thursday, my oncologist said if it wasn’t for the extracapsular spread he would have done a “watch and wait” method instead. He also tested my thyroglobulin which is still raised suggesting there is still something there. 

That is good news your lab results came back clear, and promising your TSH is undetectable.

Sorry to hear you have found another lump- such a horrible feeling. Fingers crossed it isn’t anything to worry about.

Alys x

Hey Rosegirl,

Did your scan after RAI show no uptake at all, or just no uptake anywhere other than your thyroid bed? Might be something to double check as it's an important distinction. Def worth a phone call tomorrow I think.

An FNA cannot diagnose cancer, it can only suggest that whatever it's taken cells from might be cancerous. Even a T5, the top score for an FNA isn't saying it's 100% cancerous. I think a T5 is 80 - 90% sure it's cancerous, but that still leaves a 10 - 20% chance that it's not.

When was the last time you had bloods done to check your T4, TSH, and TG? Also, has your Dr thought about doing the test that separates out the antibodies to give a more accurate TG read?

Lass

Xx

Hi Alys 

Good that docs are taking precautions to make sure they cover all areas   I had 69 lymph nodes removed in first op as well and even though 31 were positive for cancer and I had vascular invasion my prognosis is still good

i did not have problems with lip droop just difficulty moving my left arm but physio has helped to get it back to almost normal and is still ongoing. I also had problems with speech initially but with speech and language I was back to speaking fluently within weeks.   Treatment and support from other supporting healthcare departments have been amazing   I would definitely mention to docs if ilip droop does not improve

I go for my scan this afternoon and will update

Hi Lass

im sure it said no uptake but will check with CNS later. Thanks for the info on FNA it makes more sense now

last bloods were done 19th Feb which was the results shown above just checked TSH again and this was <0.01 

All sounds positive hoping swellings are nothing   I also was told I had sinus histiocytosis something which cause some lymph nodes to swell  not sure if there was any relation to my diagnosis but thyroid doc said it’s nothing to worry about  yes I was guilty of trying to research it but could not find anything on it just other serious conditions so I stopped worrying and gave up looking   

Hi 

just a quick update. FNA/ultrasound done Monday   Two suspicious nodes on the right side measuring 12 and 14 mm and a 6mm on collar bone.  Waiting for nurse to contact me once they have had a chance to review report