Hello all,
it’s me again. I’ve recently come out of my second round of RAI for my first recurrence since my TT and third surgery. I am again feeling so anxious and worried. I have my follow up at the end of March and to wait 4 weeks to know what’s happening inside me feels unbearable. I had follicular carcinoma with vascular invasion and my recurrence came back in my thyroid bed (albeit it was very small) and positive in my lymphnodes which from what I’ve read is unusual for FTC. I don’t know what any of it means and I’m going crazy thinking about finding out in 4 weeks. My treatment plan is RAI until they see no cancer anymore which could be twice more up to five times - it seems never ending and I’m terrified it’s going to get worse.
Any advice or guidance would be really appreciated.
thanks.
charlotte x
Heya Charlotte,
Nice to see you again, though I'm sorry it's because you're worried and anxious!
Sounds like you're 'special' rather than 'unusual'. Sometimes, just the phrasing of things can help whatever's going on seem less daunting and scary. So trying to put things into a more positive light is really beneficial for our mental health, especially when something is ongoing and worrying.
As you'll know from everything else you've been through with thyroid cancer, nothing moves quickly! How's your TG looking between your first dose of RAI and your second? That alone should tell you a bit of what's going on inside you, and give an indication of if they'll see more or less uptake.
The thing to remember is you've been through this before. You've been here, done this, and got the T-shirt. This is just another go on the same ride, and you know how it all goes and how it all works. So you know that worrying about what's going on, isn't going to change the outcome at all - it's only going to make the wait a bit of a nightmare. So what did you do the last twice to distract yourself from waiting for results? How did you get through the last two times you did this and had this wait?
Lass
xx
I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.
Hey Lass,
Firstly, you are so wonderful and I for one am very grateful for your kind supportive words on this group!! So thank you! I have actually been dreadful at monitoring blood results to the point where I actually don’t often seek them out (don’t know if that’s through fear or through ignorance or both) However, I will do now as I now understand it all so much better, largely because of what I’ve read on this forum and because after two years I’m asking the right questions at my hospital appointments.
I’ve been better this week - work has kept me very distracted and it’s my birthday Saturday so I’m concentrating on that! It’s so bizarre how some days I can put it to the back of my mind and barely think about it or even worry and other days my worries and anxiety consumes me to the point where I can’t focus on anything else. I start counselling next week and I hope that this will help me control my anxiety and fear.
thanks so much again for always replying! I hope that you are doing well too!
charlotte x
Heya Charlotte,
I think the ability to shove things to the back of our minds one day and then being consumed by it the next just means we're human. lol. Our heads like to bring things back up, often at night when we're trying to sleep, to try and work through them and reconcile our thoughts, feelings, and experiences into manageable chunks. Unfortunately, some things are too big to be broken down that way in one go, and we end up anxious and unable to sleep.
I'm glad things are looking a bit more positive and manageable this week, keeping busy is good at keeping minds occupied and stopping thoughts from wandering. It's why I usually suggest clearing out an over full cupboard, doing a bit of gardening, going through your wardrobe and donating things you've not worn for a while or won't wear again, etc etc. Focusing on something else just helps you get through that waiting period.
Oooooo, so what's the plan for your birthday? Something exciting filled with treats I hope?
And yes, always good to keep an eye on your bloods. TG will let you know what the cells are doing, and you can keep an eye on if they're going up, going down, or staying stable. This is good, because you don't always see the same doctor every time. So if you're aware of what your bloods were, then you'll know if there's something they need to be aware of that they might have overlooked. Then your TSH is good to know, because you should hopefully know what it is they're trying to keep you supressed to. So should you have bloods done at your GP office, you'll know if they are right or wrong and will then know if you need to let your specialist know. GPs often don't know about TSH suppression and we sometimes get folks popping in saying their GP has altered their dose or thinks their dose is fine because they're within 'normal' levels, when usually we need to be outwith normal levels. Then making sure your T4 doesn't get too high whie you keep your TSH nice and low, means you'll hopefully avoid palpitations and heart issues. So it's def a good plan to track them and know roughly where you should be and what's going on if you can. So it's good that you're starting to get on that!
If I don't hear from you before, have an AWESOME birthday, and have a drink of whatever you're having and an extra piece of something tasty for me!
Lass
xx
I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.
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