RAI Resistant

Hey there Kaz, 

Well now, that's a lot to take in. Do you know when you're due to see him again? Might be an idea to take a list of questions and a pen to note down the answers. 

I think I'd be asking the following.... 

• How do you know the lumps are thyroid cancer? 
• If they are thyroid cancer, can you be positive they were 'awake' and active when you had your RAI? If they weren't, they wouldn't have taken up the RAI.
• Could they have grown since the RAI? If they weren't there during the treatment, they'd not have glowed. Cause to go from 15 to 32 means that something has woken up or grown since RAI.
• At what point do we look at targeted therapy? 
• Radiotherapy or TKIs? 

That's my immediate questions I'd want answered I think. Then depending on the answers, I'd then decide on how to proceed and what more to ask.

It's def not a fun position to be in, and the future will look and feel very unsettled at the moment. But being proactive in understanding what's going on, and how things will proceed, will help you get your head around it all. 

And you've found us now too, so please do reach out at any point if you've any questions or want clarification on anything. We'll do what we can to help, however we can. 

Lass

Xx

What’s RAI please. I had a PET scan which showed deposits in the Thyroid, I than had a guided biopsy to be told by the oncologist that it has come back as cancer. I am waiting for an appointment with the Endocrine team to discuss treatment. This is on top of my recently diagnosed mucosal melanoma what I’ve had surgery for but waiting for repeat scans prior to oncologist appointment to discuss further treatment. I am very worried and anxious so any words of encouragement would be welcome.

Hey there

RAI is shorthand for Radioactive Iodine, and it's how they treat some thyroid cancers where other cancers might have chemotherapy. It's a targeted treatment, so in no way as damaging as chemo is.

They'll probably make sure the melanoma is all sorted before looking at the thyroid cancer, as thyroid cancer is usually very low risk and slow growing. But if you've any questions about either cancer, the forum will help you out as best we can. Just shout.

Lass

xx