Thyroid cancer

A place for people affected by thyroid cancer to support one another, ask questions, and share their experiences.

Recurrence

Ces89
Posted by

Hi all,

Me again. I posted a little while back about having my third surgery to remove a recurrence that was picked up during my year on follow up. The recurrence came in my thyroid bed on the left side where the initial tumour was removed. My first tumour was contained and whilst I know that the cells can lie around the thyroid I’m still in shock that it came back and I’m facing RAI again - awaiting dates. I now have constant worry of it still being there and multiplying or it coming back again and again. I wondered if anyone on here had had a recurrence within a year of TT and how you are now? I’m just worried that this is the start of an even scarier journey and I’m going out of my mind with worry. 

Thank you in advance

lulu18
Posted by

Hello,

I had my thyroid remove completely in September last year. Unfortunately wasn’t able to have RAI due to being pregnant. I had to wait a year to have it. Whilst waiting my cancer came back and went to my lymph nodes and lungs. I’ve since had a neck dissection and RAI. I am doing all okay and treatment is working well. 

I try stay positive as much as possible, but I always check my neck once a month. 

Lucy 

Ces89
Posted by

Hi Lucy,

Thanks so much for your reply. I’m really pleased you’re doing alright. Yes, positive thinking helps definitely. 

This whole thyroid cancer business is complicated to understand! I’m so glad I found this forum.

Thanks again.

charlotte 

Waxwing
Posted by

Hi,       I was in a similar position to you a couple of years ago and posted on here to try and get some feedback from anyone who had gone through this experience. Like you I had a recurrence within a year. This was becausethe initial Thyroidectomy had not been totally successful and a small amount of of tumor remained despite rai and was spreading into lymph nodes. It was a difficult and scary time but things worked out and after more surgery and rai my thyroglobulin levels are undetectable for now.  Stay positive and hang in there. All the best.

Ces89
Posted by

Hi Waxwing,

Thank you so so much for your response here. It’s come at a fantastic time as I’ve had a couple of really down days. I had my pre RAI consultation yesterday and they confirmed I’d be having two high doses 6months apart. The first will be February. With the possibility of more if required. Your situation sounds the same as mine re: recurrence.All I want is someone to say by this point you’ll be ok which I know is an impossibility with thyroid cancer. What you’ve said above makes me feel so much better though, thank you. 

long may your levels stay undetectable! 
x

Lass
Posted by

Heya,

Just wanted to pop in and check how you were doing now? Feeling any better about things at all?

Lass

xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

Ces89
Posted by

Hey Lass,

Thanks so much for checking in! I have good days and bad (like all of us I’m sure) I was particularly bad over Christmas - it’s the constant fear that my body is doing something bad that I can’t see or feel. But I do try and put it to the back of my mind. I have my iodine treatment on 17th February and another one to be scheduled 6months later. I’m having the highest dose of RAI. I really hope that this sees it off for good but again another thing that I worry about is that it’s always a risk it’ll come back and with thyroid cancer they will never really say you’re cured. That’s quite a hard thing to process. But, onwards, just got to ride the wave and hopefully it’ll get easier in time.

If anyone has any advice for coping etc I’d be very grateful. Thanks so much again for checking in - this forum has helped me so much.

charlotte x

Lass
Posted by

Hey Charlotte,

I'm glad there are some good days in the mix, that's always positive to hear! Christmas, New Year, Family Celebrations - they're all tough dates when you've got health worries. There's always that 'what if this is the last' type of thought going on in your head, even when it very definitely isn't going to be your last! But hey, that's the human brain for you!

These days, they don't really tell anyone that they are cured of any cancer. I believe the phrase they use is 'No Evidence of Disease' or NED. Cancer is much too tricksy to ever be classed as fully gone gone, you just get to a point where the likelihood of it returning is slim to none. So with thyroid cancer, it gets down to an annual blood test and nothing more - though I've never got to that point! lol

If I were you, I'd just concentrate on the RAI on the 17th of Feb. Ignore the one that may or may not happen in 6 months time, because there's plenty of time between now and then, and plenty of things that might happen that mean the second one doesn't need to happen. Hopefully, this one on the 17th will be the zap it needs to get rid of it all, and then bloods show that all is good so they can save the second one for a later date.

Regarding coping, keeping yourself busy is a good one. So finding something to do with yourself whenever those thoughts start creeping into your head. So whether that's a craft, or a jigsaw, or redecorating the house, or cleaning out a cupboard, or who knows what else that might take your fancy. Just something you need to concentrate on that takes your mind off the worries creeping into your head. I don't know if you've read my story on my profile? But if you do, you'll see that I've got all sorts going on, so I can def empathise! So feel free to ask anything you like and we'll help where we can!

Lass

xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh