Experience of radioactive iodine

FormerMember over 5 years ago

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Hi everyone - I had a TT back in May (for papillary carcinoma) and have felt pretty good since then, bar jaw ache, right vocal cord paralysis which has sorted itself out thank goodness and needing a course of penicillin as the scar got swollen and possibly infected. However my follow up CT scan showed a larger than usual paratracheal node, which I obviously hoped was just reactive. However as it didn't go down by the time of my ultrasound they FNAd it, results came back indeterminate so I have an op next week to remove it. NOT keen to go under again but it seems sensible to take it out - although I am slightly bemused they are just taking 1 node (presumably others could not be enlarged but still have cancer?) I do not want to go under again to remove a load more at a later date!

My understanding is that if it does come back as cancerous they will want to RAI me. I am feeling quite nervous about this as have seen such mixed reports on the side effects of RAI and also whether or not it does stop a reoccurrence. I know different people have different reactions to it but I would still be really interested as to whether other people on the board have been in the same boat, what they decided and what their outcome was.

Any feedback or thoughts would be welcomed. Thank you!

barbaral over 5 years ago

It sounds like you didn't get RAI with your original treatment so it's completely logical that the docs would be thinking about doing it this time around.

Keep in mind that the vast majority of people don't go online to tell the world that they had absolutely no problems at all with RAI so what you find when googling is skewed greatly to the relatively small number of people who have had problems. I don't think it's an exaggeration to say most people sail through it without any issues at all - so much so that I remember wondering if they'd given me a dud capsule because NOTHING happened at all (but the geiger counter proved that wasn't the case).

RAI is the reason why success rates for thyroid cancer are so outstandingly good. We are incredibly lucky to have such a unique situation where something relatively simple and mostly benign can knock out our cancer cells. Compared to what other cancer patients go through with their type of radiotherapy, RAI really is very simple and effective. Perhaps if the docs had given you RAI first time around you might not be faced with this recurrence. Of course, there's no possible way of knowing.

Best wishes

Barbara

“Scars are tattoos with better stories.” – Anonymous

FormerMember over 5 years ago in reply to barbaral

Thanks Barbara - yes I must admit that chat groups to tend to be skewed to 'issues' that's why people go there - though having said that the leaflet the hospital handed me did raise a few questions in my mind. It's really useful to have other people's views so thanks for your feedback!

barbaral over 5 years ago in reply to FormerMember

The doctors have to tell you about EVERYTHING that could possibly happen - whether it's common or exceedingly rare. If they don't, they risk somebody trying to sue them afterwards if something happens that they hadn't been told about.

Best wishes

Barbara

“Scars are tattoos with better stories.” – Anonymous

FormerMember over 5 years ago

Hi SessieW

I had RAI treatment in June. Like you I was very apprehensive about it having read about some of the side effects. I really was not looking forward to be isolation for a few days either. But, apart from blocked salivary glands the day after I had the capsule I experienced no other side effects. To resolve the blocked salivary glands I sucked on lemon sweets and this worked a treat. I was in isolation for 4 days and it actually went by quite quickly. My restrictions on discharge were for a week so I was quite lucky that my level was low on being discharged. x

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Experience of radioactive iodine