Thyroid Cancer Reoccurrences

To be honest, I think all we can do is follow the advice of our expert medical team.  
I had a TT and neck dissection in February 22, RAI in May 22. 
Then a scan in November 22 revealed more cancer so I had another, larger, dose of RAI in January 23.  I didn’t want more surgery.
I have/had a rare aggressive version of papillary thyroid cancer known as Tall Cell.  My recent thyroglobulin is good and I’ve an ultrasound on Wednesday.  If my team said I needed more RAI I wouldn’t hesitate. 

My husband died of a rare bowel cancer a few months ago.  He had a tough 5 year journey and his medical team were brilliant.  I learned how expert they are and trusted them.   

I think it's totally understandable that you're concerned about the RAI, I felt the same when I was told that I needed it too after my completion thyroidectomy for thyroid cancer in August 2023. I had my RAI in the autumn.

I felt very apprehensive about the treatment itself and its after effects. I know from my own research and from thoroughly quizzing my cancer team that it is a well established and researched treatment.

Your health's in your hands of course but my advice would be to listen to your team and get as much reassurance as you can from them about side effects etc, you can also ask us on here as well of course. Good luck. 

Thanks for your reply, that's helpful.

Thank you, appreciate that. I am really apprehensive. My RAI is in a couple of weeks.

You're most welcome. If you have any questions please feel free to ask. Also, there have been a fair few threads on the subject  just in the 2 years I've been a member so if you do a search  you might find old threads about RAI on here reassuring and helpful.

I remember feeling pretty apprehensive myself but honesty in the end the whole experience was all rather matter of fact. The key is to take plenty of things to help you pass the time. 

Hi there,

I completely understand where you're coming from—it's such a tough decision, especially when you're trying to balance risk with peace of mind.

I had a hemithyroidectomy in February for papillary thyroid cancer, and because they found spread to my lymph nodes, I’ll be having a second surgery to remove the rest of my thyroid followed by RAI. I’ve also had concerns about RAI and the potential long-term effects, especially things like secondary cancers or salivary gland damage. It can feel overwhelming when you’re already trying to recover from surgery and get your life back on track.

From everything I’ve read and discussed with my doctors, the decision to go ahead with RAI really depends on your individual risk level—things like tumour size, lymph node involvement, whether there’s any residual tissue left, and if there are signs of distant spread. For lower-risk cases, some doctors are now leaning away from RAI unless there's a clear benefit. But for intermediate- or high-risk patients, RAI is often recommended because it can reduce the chance of recurrence and help with future monitoring through thyroglobulin levels and scans.

That said, your concerns are totally valid. If you're unsure, it might be worth asking for a second opinion or requesting more detail from your care team about why RAI is being recommended in your specific case. You deserve to feel confident in the treatment path you choose.

You're not alone in questioning this—we’re all trying to make the best decisions with the information we have. Whatever you choose, it’s okay to take the time to ask all the questions and explore all the options.

Warm wishes,
Butterfly Resilience 

Thank you for the detailed reply. I found it really helpful. I have my radiotherapy planned in a few days now. Appreciate the support.