After total thyroidectomy RI treatment, good idea?

[Mendipexpress]

I’ve had all of my thyroid removed and some thyroid cancer around my windpipe. It has been recommended I have radio active iodine treatment. I am taking 125 levothyroxine at the moment but have only been on them for 4 weeks. I would be interested to hear what anyone has to say about this situation. Thanks

[jimh111]

People who have been in the same situation can comment from experience. I’ve seen comments that suggest radio iodine can cause problems for some patients who generally feel it is due to the loss of the thyroid. I don’t know but I suspect the dose of radio iodine is lower when it is used to clear out any remnants of thyroid tissue. A total thyroidectomy is rarely total, small fragments of thyroid tissue remain, not seen or be inaccessible and these can grow back. If it were me I’d go for radio iodine as it will reduce any chance of cancer in the future.

[Mendipexpress in reply to jimh111]

Thank you that’s helpful. That was what I thought really, better to have the treatment just to make sure it’s all gone. Fingers crossed.

[Batty1 in reply to jimh111]

I asked my endo if my little bit of residual thyroid tissue could grow back or produce enough hormones to cause my thyroid levels to tank ….. He said no without much explanation.

[jimh111 in reply to Batty1]

Thyroid tissue can grow back sometimes. I suspect it depends on how much stimulation from TSH. In the case of thyroid cancer it depends on the type of cancer bearing in mind that cancer cells grow more rapidly by definition.

So, my understanding is thyroid tissue does sometimes grow back a little and it is most important to take advice from the surgeon or endocrinologist in cancer cases as each case is different.

[jimh111]

There's a useful document here thyroidcancer.com/thyroid-c... . The important point is there is no urgency for RAI treatment so take your time and look at advice from people who have had thyroid cancer. There is a specific support group butterfly.org.uk/. Also, talk to your doctor and the surgeon, there are different types of cancer with various levels of agressiveness and the surgeon can tell you how easy it was to find thyroid fragments.

[Mendipexpress in reply to jimh111]

Thank you. I’ll have a look at the document. X

[Angel-fish]

Hi-

I have PTC and had RAI in November 2021.

The reason I went forward with RAI were:

1) My tumor was heavily vascularised. This greatly increases the chances of distant mets.

2) The number of positive lymph nodes I had 12/ 18, including both sentinel lymph nodes.

The percentage of positive lymph nodes has been shown to correlate to your risks of reoccurance, and mine was quite high.

Personally, I would not have gotten RAI if I didn't have lymph node involvement or if the percentage of positive lymph nodes was low- like less than 25%.

One thing that people don't consider is your individual appetite for risk around still having cancer. If you're one the people who really, really hate the thought that you have cancer, then RAI ablation will mean that Tg will become a reliable indicator of possible reoccurrences. On the other hand, if the risks of secondary cancers associated with RAI are more anxiety inducing for you, then RAI may not be the way to go. Of course, all of these considerations get modified by the extent and type of the disease that was discovered during your surgery.

Best of luck with your choice!

[littlecandle]

I had a total thyroidectomy 26 years ago. I was lucky, in the tumour was encapsulated and I, on advice from the Mayo clinic where a friend worked, didn't go for the iodine. I haven't regretted it.

However, I do know of a few people who did get it and a couple developed throat cancer, which was blamed on the iodine.

[Mendipexpress in reply to littlecandle]

Thank you very much x

[annnsandell]

I had radioactive iodine treatment in 2009 after a total thyroidectomy for cancer followed by suppression until the last year, I am still cancer-free. I am hoping this has been fully explained to you. The iodine is attracted to any thyroid cells that are left in your body and the radium kills them to stop them from spreading, one of the most successful cancer treatments. It is a bit weird because you have to go into isolation until the radium has reduced, plenty of reading and time for you. There are other things like not having any dairy before. A different experience, no pain or discomfort. Don't worry about stories of damage to thyroid or dose required as you don't have a thyroid to spread the cancer cells anymore. I see jimh111 is recommending the Butterfly Thyroid Cancer Trust website, they will be able to answer all your questions.

[Mendipexpress in reply to annnsandell]

Thank you so much that is reassuring. I’m glad you’re clear! X