Thyroid cancer awaiting RAI

Hi, I had extracapsular spread, this means it has spread outside the lymph nodes and yes they will be concerned about it, my oncologist at the time said it gave hime cause for concern, but in saying that, I can say is it will be fine and I hope I am not causing you more stress.  I am 8 years post treatment now!!! I was 32 as well actually when I had my diagnosis, so the road ahead is good.  I had a normal dose of RAI at the time, after TT and neck dissection.  Honestly it will be fine, its all very scary of course now and the unknown.  I work full time and run my own wee business, so life is normal and very busy.  

If you have any more questions just fire away.  Its been that long since I have been on here, I couldn't even access anything there, had to set up a new name, I just pop by once in a while and saw your message.  

Take care

Lolabean :) 

Hi there

I'm so glad to hear you are doing well. What a scary journey is is for all of us. My oncologist was so behind the day i saw him....2 hours behind.

Then we had several interruptions during my appointment so just left feeling confused.

Im waiting for a call about my radio iodine as there is a waiting list of 6-7 weeks due to covid.

Im still working full time just to keep my mind busy and have four little ones so need to act normal lol.

I had 15 nodes out but only 2 were cancerous the one 35mm had extracapular spread and he just kept saying thats is very big and concerning.

Do you ever get sore throats or side effects from operation ? 

I think the best thing i can do is not over think. 

Lovely to hear from you 

Finally got my original name back, so now you can read my profile.  I haven't updated in about 7 years, should probably do that.  I had 12 nodes that were cancerous out of 37, a couple of nodes in each level of my neck.  

That is really not great to have had people coming into an appointment, no matter how mad things are.  At the time I waited 3 months before getting RAI, as there was such a waiting list and I would of waited longer, only I was chasing things (my first appointment was just at the bottom of the tray) and I was lucky that someone had to cancel their RAI, so it was perfect timing.  Do you have a nurse contact you can call and ask some questions to?  I was always able to call and ask anything after an appointment.  You can also ask for a copy of any letters to your GP, this way you can make a list of questions for next time and take time to read through what happened at the appointment.  

I didn't get any sore throats after surgery, but I have heard of others that do get that from time to time.  

Lolabean :)  

Hi

Had my first surgery to remove right side of thyroid last autumn and throat was initially sore but eased off after a couple of weeks. Had my completion surgery 10 days ago and this time my throat has been ok after first 48 hours. Sorry to hear you are struggling to get clarity and the pandemic seems to make communication more difficult. Keep pressing till you get as comfortable as you can be.

I am having RAI 7 weeks after surgery and I am trying to focus on the fact that this is a tried and tested therapy of 50 years standing and dosage is lower than in past years. Still looking for guidance on how to keep my family safe after I come home but sure that will be provided. 

I found good advice available from Butterfly Thyroid Trust so that might be worth a look. I hope you get the answers you need and I wish you well for the future.

I think i will try and call oncology today as i was supposed to be getting a call last week as TSH was 7.23 and calcium 2.1 but nothing.....Im only om 100mcg levo.

I have had to do the same tbh....just chase all the time for everything. Im expecting a call from RAI nurse today as she was too busy to talk to me in the clinic the other day but im really not holding my breath.

You really did have alot of nodes out! Mine were all right side but think one might he growing back as oncologist measured 8mm lump in my colar bone the other day and documented it.

Did you get the feeling no one took you seriously , my oncologist was having a laugh and a joke with staff around me and then said sorry we are only joking as we know you are going to be ok! 

At the start for me it was very much like that, I was treated like I was making a fuss or asking too much.  It was a real struggle for me, as knowledge is what gets me through, knowing and understanding.  Thankfully my old oncologist retired, plus another lady I saw at times.  The new oncologist is brilliant, but that was at least 6 years of dealing with people who just didn't want to work with me on it, in terms of listening to me about my worries and what I needed to understand.    

A while ago I had a 7mm node, but nothing came of it, I think if it was anything to worry about the RAI should sap that, I would hope.   

Just do what you have to and keep on at them for things, don't let them make you feel like your asking too much or making a fuss, easier said than done.  I just ask now and that's that.  They still take a step back when I ask for copy of the appointment letter, but I always get it.  

Lolabean :) 

Im like that too...always asking and pushing for my results. 

My TSH is 7.23 and I've called everyday as should now be on a higher dose and they just keep saying we are waiting for the oncologist. 

Good news though I got a call to say Radio iodine is 9th September so im on low idonine diet now....not sure what I can eat tbh as paper work has not come through yet. 

Where about in the uk have you had your treatment? Im based at Wolverhampton hospital. 

Gosh yes 7.23 is way too high.  Hope you get sorted with them on that soon.  My treatment was in Belfast.  Funny my RAI was 7th September all those years ago now.  Very glad to hear you have a date.  So weird, your dates of things are nearly along the same lines as mine.  As it was about this time I got my date too, as it was just in time to do two weeks LID and come off tablets (as back in the day, most people were put on T3 and you had to come off meds).  

Lolabean :)