Follow-Up

Heya Raven, 

What have we said about Googling..... Lol

Mine is in my bones. Bone spread is really uncommon and rare, and if that RAI had been absorbed by a bone met, you'd have known about it from the pain. At least in my experience. After each RAI my oncologist asks where I felt pain, and everywhere I've felt pain, is where I've been glowing. No extras, no missed ones. 

Mine is still taking up RAI, or it was the last time I had it at least, and I've had it 4 times so far. We've got rid of a lot of the mets, but there are still some hanging on. However I was RIDDLED with it. It wasn't just in one spot when they found it. It was just about everywhere. 

You can see my story on my profile too if you're bored and have an hour or two to spare. Lol. Just remember, I'm bloomin weird and in no way a regular medical case at all. Lol

Lass

Xx

Hi Lass,

Thanks so much for responding, especially since you have so much going on yourself at the moment. I hope things get easier for you soon!

I know googling is the devil, I've done a good job of getting on with my life and forgetting about it but as the appointment creeps up I start to worry again.

The only pains I had after the RAI were in my neck and my legs but it felt more like restless legs than actual pain. Since I have been having trouble with a pain down the back of my leg but it feels like a nerve like sciatica. The RAI showed a slight uptake on my right hip but when they done a CT there were no abnormalities and my tg was undetectable. 

That's good to hear that the bone mets do absorb it as I had read some articles which said they didn't take it up well. Only another month and I will know the situation.

Do you know the reason why they wait so long to check? They said something about waiting to the current treatment leaves the system but surely leaving you 8 months to re-scan a lot can happen in between times. 

xx

Heya, 

The RAI stays in your system for a minimum of 6 months. So before they give you a scanning dose, they need to make sure that all the previous radiation has left your body, and anything it was working on dies off and is absorbed or destroyed. 

So 8 months sounds a perfect length of time to wait from one to the next tbh. And when it comes to thyroid cancer, not much will usually happen in 8 months, especially not when you've got radiation in your system.

So def nothing to worry about there. 

Lass

Xx

Hey,

So, it’s the week of my scan and I’m just wondering if this follows a normal pattern for a follow up RAI scan. It’s been 8 months since RAI treatment as stated before.

Mon/Tues this week I had thyrogen injections. Today I had an injection directly in to the vain of a small amount of RAI. Tomorrow I go back for the scan and the next day I get bloods done.

Just wondered is it normal to inject you one day and have the scan the next? Thought it seemed strange. Also, I know it’s such a small dose but I was wondering if you can normally feel a bit of pain in the areas the iodine would go to.

R xx

Hi

I had a scan pre RAI which was Monday and Tuesday thyrogen injections, them a small dose radioactive iodine tablet on Wednesday and scan on Friday. I had to restrictions after the tablet and had to sleep separately from my husband for a week.  I felt burning round my scar the following week. 

I start my RAI therapy on Monday and get admitted on Wednesday. 

Good luck with your scan

x

Hi Runner25,

Thanks! Good luck on Monday too!!

Mines was intravenous and they didn’t mention any restrictions. Felt pain in my chest and legs last night.

Had full body scan today and they ended up wanting to CT my lower body(again) and upper body this time(new). So I’m assuming somethings taken up on my scan in more than one area this time.

Don’t get the results till the 20th but already got myself in a panic!! 

Xx

Hi Ravenclaw1991 

Fingers crossed that they are just being extra cautious. I finding one of the worst parts of this disease is all the waiting! I need to keep reminding myself that people only post the worst cases on the internet and nobody posts good outcomes. I also find people don’t understand as it’s a rare cancer and they haven’t heard of RAI. Although until 4 months ago I didn’t know that there was a nuclear medicine department.

I am in Scotland where restrictions are much stricter. 

Runner x

Hi Runner,

Yeah I agree the waiting is the worst part! Find myself getting impatient when people don't understand but it's not their fault I suppose.

I'm also in Scotland(Glasgow)

xx

Hey folks, 

Sounds like you had a small dose of the treatment RAI Runner, just to make sure it was going to work when you got the big dose with the isolation. While Ravenclaw, your scan was done with the scanning type of RAI which doesn't emanate from your body so isn't a danger to other people. If memory serves, it's Iodine-131 that's used for treatment and Iodine-123 that's used for scanning.

So Ravenclaw, any pain you felt wasn't from the scanning iodine because while it is absorbed by any thyroid tissue, it doesn't kill it or break it down at all, and is also gone from your system just over 12 hours after it is put in. 

Also, you can't read into the scans they've done. It could just be that you moved, or the machine hiccupped, or the tech pushed a wrong button, or a million other things. And your consultant gives a list of everything they want scanned, it's not the techs who decide what to scan. So the upper body will have been requested by your consultant long before any scans were done, or results seen. So as I say, you def can't read into how long it takes, how many they do, or which bits of you they do.

So, time to work on distracting yourself before the 20th to take your mind off it all. Then fingers crossed its the all clear that most folks get at this stage and you can get back to life before this 'blip'.

BTW, I'm a Scot living in England! Lol

Lass

Xx

Hey Lass,

Thanks for clearing up the scanning iodine, that makes sense! The technician told me at the start that she would do the full body then she would show it to the doctor and they’d decide any further scans. She said they normally want more detailed one of the head and neck which is standard. So after my full body she left the room and came back to tell me the doctor wanted the further 2 CT scans one of the upper body and one a bit further down.

Regardless, I know worrying doesn’t help so I’m just keeping myself busy. They should put some music in the room or something, make it a bit more pleasant haha lay there for 2 hour flat on your back with your own thoughts is dangerous! 

Ah no way, I did think you had too good a sense of humour to not be Scottish where are you originally from? I lived in England for 3 years after uni, Manchester then Leeds. Still spend a bit of time in Leeds as one of my depots are down there for work

xx