Papillary thyroid cancer

Hi @MC Ire welcome to the group.  I think we are quite similar in our diagnosis, I had TT end July 22 also with bilaterial dissection and RAI is booked for 7 Dec.  I had 60 lymph nodes removed 14 of which were cancerous and also have 2 tiny nodules in my lung, which I found confusing as my Encologist said they were not on my notes, but she would follow it up and find out.  I have been told by 2 separate Consultants, one was my surgeon that I do have them but as they are tiny they can not doing anything about them, and hopefully the RAI will blast them.  Then my Encologist said RAI would not destroy them, so I don't know what to think at the moment.  Can't be easy on you having small children, mine are grown up and left home, and it is still stressful worrying about what will happen in the future.  At the first appointment you are led to believe that this is the easy cancer and has a high percentage of success, then you read about other people's experiences, and get more information about your own diagnosis ( for instance I was told I have a 60% chance of having Hurthle Tall Cell variation at my last appointment).  So I can understand how you are feeling.  Good luck with your ultrasound next week, and sorry I don't have any suggestions to make as I am learning myself a little behind you in terms of time/treatment. 

Hi Petal66,

Thanks so much for your kind reply. From reading through previous discussion threads, it seems that thyroid cancer really is a slow burner that requires good levels of patience. It's the ambiguity at the moment that is really getting to me. 

Best of luck with the RAI over the next few weeks. I found the RAI itself okay, although looking back I think I was quite fatigued for a number of months. my youngest was 8 months at the time which meant I had to be away from home for 3 weeks, I found that part of it very tough. 

I will be thinking of you over the next few weeks. And thank you again so much for your reply.

Hope your US goes well this week @MC Ire, let me know how it goes.  My RAI was cancelled yesterday due to shortage of the RAI pill, I was 7 days into my LID, but it can't be helped.  Got another phone call today saying they could do it on the 21st Dec, I had said yesterday that I would prefer to get it out of the way rather than having to wait until Jan. So fingers crossed for the supply of pills for that date or it will be cancelled again.

That's a shame Petal66. Shortage of the RAI pill is something I wouldn't have thought about. At least you can resume normal eating. I've got my oncology appointment Monday to follow up on the effect of my RAI and the subsequent scans. Will keep you posted.

It does mean I can enjoy a few days off the LID diet before I start again on the 7 Dec, so have a delivery tonight which is bringing me ice cream, chocolate, mince pies, mayonnaise, battered fish, all the stuff I missed.  Plus my tea and coffee with proper milk and coffee whitener have been lovely.  It's amazing how appreciative it makes you lol  Good luck for your appointment on Monday, keep me informed and I hope it is great news for you x

Hi Petal

Had excellent news from the oncologist yesterday. The scans after the RAI detected no iodine take up anywhere in my body. So the conclusion is that all my cancer cells were contained in the removed thyroid. My thyrogen anti-body levels are still being tested as they are very hard to detect but should tail off to zero over months or years. So I've got another appointment in oncology in 6 months after blood tests and scans in perhaps 5 months.

So the message was very positive and I can go and enjoy things with less concerns.

I'll be 60 on Christmas Eve so can now look forward to this.

That's brilliant news @CanaryN, you must be really pleased and can enjoy your Christmas without having to worry and Happy Birthday too for your 60th. x