Thyroid Cancer Support Group

RAI does have many risks that they don't even warn you about like cornea damage. Well I think in UK they warn them about possible blurred vision...
Papillary cancer is very slow growing and if they got it all out there is a good chance it will never bother you again.
I think you are probably fine with just monitoring your thyroglobulin for increases.

Great article BTW!

Thank you! I feel so relieved now I have made the decision- thank you also for all your past posts- you were one of the people who made me start asking more questions. I am now very happy and comfortable with my decision. thanks again!

I said this before and got into a sparring session someone but I’ll say it again. If you are not going to listen to your doctors why bother going to see them? My doctors are not gods but they know a lot more about this crap than I do. I don’t hang with them on the weekends but I think they are doing this for more than just the money.
I know people have side effects from RAI but for me 3 months after I had it I spent a great weeks vacation Mountain Biking in the woods of Maryland in 3 different state parks. I have had ZERO side effects from RAI and don’t regret doing it.
I hope that in the future I don’t find out it was a mistake but I am putting my health in the hands of my doctors and not a bunch of people who have never examined me and don’t have a medical background.
Maybe I’m the dumb one here but to not get treatment because some one on a blog with no medical training is against it makes no sense to me. I know you can find articles against RAI but you can also find articles pro RAI.
This all reminds me of the woman who fled Minnesota because she didn’t want chemo for her kid.
It’s your body and your life you have to do what you feel is best. Please don’t “flame” me with a bunch of nasty replies to this. I’m not “flaming” anyone here just giving my opinion.

Everyone is entitled to their opinions and putting articles out there for everyone to see gives them the same perspective and facts it gave me...and the right to make an informed decision. I have to disagree that ALL doctors are equally informed..junfortunately the proof against that is plentiful. I for one would rather make decisions with files of information I gather from REPUTABLE sources and Institutes based on the LATEST research, both pro and against.. as an educated balanced individual , and take an active interest in my treatment..after all, it is my body and my future, than blindly trust an overworked individual who may care, but dont have the time, interest and passion in my individual case that I do.The unfortunate fact is that treatment regimes are decided based on available data at the time, fed down from Institutes to doctors who do not have the time to research each condition, especially if it is not their speciality, and then becomes entrenched often for decades. Unless your doctor is a ThyCA cancer specialist who does just that, it is unlikely he has the time to stay up to date with the latest research. They are just bombarded with too much information on too many diverse conditions and medications and protocols. NEW approaches are seen as risky until there are enough doctors willing to spend the time to really look into it and then pressure the institutes to alter their guidelines... there are many examples of this, but I wont bore you with this. If you read the article I refer to, instead of just dismissing it.. you will see it was written by highly reputable doctors from top medical facilities who SPECIALISE in these matters... Stanford Mayo etc. They freely admit they also previously freely recommended the RAI,but based on RECENT research and findings they NO LONGER believe the benefits outweigh the risks. I am happy for you that the RAI worked for you, from what I have read.. not everyone is so lucky. For me personally, right now, I feel my decision is right. (I may be proven wrong :-( But there is just too much about RAI that is not logical and the stakes are high.It may change, because I am openminded and willing to listen and research and be swayed by FACTS. Not blindly follow just because it has been procedure for years. Luckily a lot of people think like this, otherwise we would still be subjected to many harmful outdated practises. I do wish you all the best, all of us were dealt a bad card with this disease and we must all cope the way we feel is best for us and our families , wishing you continued good health

Just an update.. I shared this article with my Oncologist today, and he confirmed since I expressed my reservations about doing the RAI to him he has looked into it extensively and has been stunned by the controversy around the treatment that he found. He confirmed that they (doctors, specialists) follow the procedures they were taught and do not always 'find' the new research etc. He is now quite happy for me, with my profile, to not do the RAI and will monitor me with regular Thyroglobulin tests and other imaging to check for recurrence. Phew... what a relief!

I tried to explain this to someone on the yahoo group and had people practically threaten me. The information made them mad at me!

I know, people get very aggressive, ... it is a defensive mechanism. This is a difficult disease to come to terms with and it is far less threatening to leave that decision to someone else, ie a doctor; and 'trust' that they will make the right choice for you. If you do start questioning them it does mean more anxiety and taking responsibility for your own choices.. so I do understand the reactions. I personally believe in knowing all the facts and sharing them with others in case they do make a difference for someone else! Good luck! :-)

Thanks for being here everyone. This is so new to me; I even accidentally joined the depression group!

I was just diagnosed on Tuesday with Papillary carcinoma, they wouldn't say what stage, and didn't know if it had spread. The cancerous nodule that they did detect through ultrasound guided FNA was 2-4 cm.

So my question is, where do I find information about RAI, possible side effects, "benefits" etc? The doctor I went to presented it as a given but I want to learn everything I can so I know what I'm getting into. I'm interested in reading about "negatives" or the con arguement and have read the article SunM posted. Any guidance one good resources is much appreciated.

I have used Thyca.org and a book called Thyroid Cancer a guide for patients to learn about RAI. also just searching on the net.