Can RAI be delayed?

Hi Brighton Rose welcome to the forum and I am sorry that you have not had a response as yet.

Your particular circumstances seem very unigue and I wondered if you might like to give the Macmillan Line a call and maybe have  a chat with one of the Nurses there as they may be able to advise better. 08088080000.

Hopefully you wont need the RAI but f you do then getting as much information as you can will help you to make any choices that you have to make.

Thanks Gail.

Im lucky as my local Macmillan nurses have been really helpful

I guess I just have to be patient and wait for my results! 

Hi, I won't be technical but I was told they only do RAI if nodules are over 4cm so you might be fine not to have it. Obviously totally depends on your diagnosis on the whole.

Regarding IVF, I really feel for you. I would love another baby but have to wait 6 months after RAI and hope that I will be all clear by then.  I thought about delaying treatment but then I thought it would be so much worse to leave a tiny baby for up to 3 weeks to have the treatment. Sooo, probably best to have the treatment as quickly as you can force them to give it to you, but there does seem to be a backlog. I am hopefully having mine next week but have been waiting since November! 

Thanks for your reply

I found out I have been recommended to have low dose RAI due to having Hürthle cell type, which can be more aggressive. I’m lucky and they offered it within 2 weeks.

I’ve decided to freeze my eggs before RAI, as egg extraction is done as part of IVF anyway, so I may as we’ll protect them and do it before RAI. I’m hoping I’ll get NHS funding for egg freezing but we’ll see! Ive been told if I freeze my eggs I may only have to wait 3 months to get pregnant (as the eggs won’t have been affected and the radiation should have left my body).

I hope you get your RAI soon...and your next baby!

Rules have changed on RAI since I had mine (7 cm follicular Hurthle Cell variant) 10 years ago. All I can say is that if you tell your doctors about your IVF circumstances, they can take an informed decision on whether it's better to put off any RAI until later, or potentially to use a lower dose (doses have also been changing in the past decade - generally in a downwards direction), in which case you might not need to wait so long for IVF.

Just make sure everybody knows what you want and what you're planning. If they can work around it, I'm sure they will.

Thanks

They have recommended low dose RAI due to Hürthle cell. I’m going to freeze my eggs ASAP and then have the RAI.

My team involved in my care have been amazing - I’ve been listened to and treated holistically as a person :) 

I’m glad to hear someone who also had Hürthle cell is doing so well! 

Yes, I'm 10.5 years post surgery now, no issues at all. Another past member who also had HCC went on to do all her doctor training and has been practicing for years now. So both of us are clear examples that nobody should panic about the HCC 'label'. 

Also, in the many years I've been on Mac, we've had people go through successful IVF treatments as well and many more get pregnant after treatment. Try - if you can - to view this as a pothole in life's path but one you won't fall into and drown in. It may mess up your suspension for a while, but it shouldn't stop you going where you want to. 

It's great to read that your team are treating you well. That makes a massive difference. 

 I’ve just heard my funding application for egg freezing has been approved so I’m feeling like the luckiest woman alive today! 

Thanks for sharing and I hope this post brings hope to others with hurtle cell and who would like children after thyroid cancer. I read every post I could find - some years old and I found them informative and helpful, so I’m hoping this post will be the same for others ️