Anyone have radiation iodine (RAI) Therapy after Thyroid Lobectomy?

@mift24, good questions. I'm tagging fellow members @tessa0703 @lbrockme @kevinmk @hello2 and @cherylharder2001 to see if they have experiences to share.

Mift, have you considered getting a second opinion?

my wife had RAI after a complete thyroidectomy and about 7 months after RAI her tear duct drains stoped working and tears would run down her cheeks if she didn't dab them with a tissue. recently had surgery to install tubes for drains from corner of eye to the sinus cavity. this worked for the left eye which now drains normally . currently scheduling a second surgery to fix the drain in the right eye which is still not draining.

the RAI also affected taste buds, reducing their sensitivity. the RAI affected her saliva glands which swell and get sore once in a while. we understand now that these side effects from RAI are possible and vary a great deal from person to person,....but cancer free after two years.

I was diagnosed with Grave's Disease. I had side affects from the medication I was on. Since I already had 4 nodules on my thyroid, which had to be tested once they were big enough, I decided to have the thyroid and nodules removed. Well I made the right decision. They found cancer. It's been 2 1/2 years. As of this past spring I am cancer free. Yes I had the RAI treatment twice. No problems. Food doesn't taste as good to me though. But I can live with that. But during this time I hade Lupus and didn't know it until November 2023. The Lupus damaged my nerves.

I think you have great questions. You have done some research. Now it's time to take that research to the doctor and ask those questions. I would hear them out, take notes for future reference. I also woukd consider a second opinion as well from a experienced endocrinologist and ongologist. When you have questions it's worth hearing what different opinions are.
I hope you get answers to help you

Had RAI after total thyroidectomy and central neck disection. Surgery in December 2023 and RAI in February 2024. Everything looked good on scan. November 2024, markers went up and biopsy confirmed PTC in right lymph node. CT showed 10 x 10 x 15 mm right level IV lymph node with internal calcifications, likely involved. It also showed an
8 x 5 x 8 mm right level IV lymph node, indeterminant. I am having a right lateral neck disection tomorrow. All right side lymph nodes will be removed. I am not sure what treatment after. My doctor is meeting with the tumor panel. He is leaning against RAI this time. He is afraid it won't be effective. It depends upon type of metastasis, if it evolves into something different, etc. RAI is usually effective for missed margins. My doctors said they were very surprised my the spread. My PTC was on my left lobe and 2 center lymph nodes. Nobody wants to go through this let alone twice. Praying they get it all for you and treatment is successful, whichever type you do.

You have good questions. Some things are not clear.
Have you had a Petscan? The Pet scan would show remaining cancer. The post op report is not enough.
Do you know what type of cancer was found? Papillary has variants.
Do you trust that your medical team has sufficient experience with Thyroid cancer?

Hi
Oh dear...
RAI treatment post thyroidectomy as LOW RISK. I had total surgery with 12 lymph nodes (2 affected). Right side dissection done during op. PAPILLIARY CANCER.

I chose to trust my surgeon who removed a carcinoma in the milk duct of right breast. A cross section in there was done. That was 2005. No radiation thank you. No problems.

I follow Mr Gary Clayman Top USA Thyroid Surgeon. I read my op in the ATLAS HEAD & NECK
he wrote it.

In my 4th year last year the ultrasound showed 77mm radius of calcification. No other ultra-sound pictures have studied this area.

So CT Scan. Inconclusive.
PET scan showed no metatasis. Dot on right lung. Inflamation in my left hamstring, in bladder. None of the calcification areas showed any intake of glucose and iodine.
The Putuitary gland showed warmth. So MRI of the brain and nothing.
No cancer shown but calcification in these 3 areas/
2 lymph modes 8mm and 7mm. Plus another 'thing' 19mm x 9mm ? Surgeon now says it could be my thymus. But this has not been verified in the radiology department.
Another CT scan (with iodine and contrast )done in early November still says inconclusive so another with iodine and contrast will be done in May 2025.
There is a point when we should trust our surgeon. The anaesthetist has p. thyroid cancer returning even though he had 2 bouts of RAI treatment. The RAI treatment is different from RAI Scan. But both need stopping thyroxin (sythroid) for 3 weeks with no iodine in meals.

If cancer is left in the thymus and it is not removed it ill gavatate to lymphoma which my father died of.

We have 50 lymph nodes left and 50 lymph right. Surgically removing them is the most important step.
RAI treatment can do heaps damage to pra and surrouning throat, oesophagus and the actual treatment can cause leukaemia.

cherio JOY (Tucki). 76. (NZ)

Hi
So are the lymphs removed via your initial scar??? At the front lower position????

cherio JOY. (Tuckie)

My doctor was highly rated. Plus he is on the tumor board. We did an MRI and CT, but nobody saw anything. He did say it was deep in there. He said once he got in there this time there were 2 additional nodules. He took all the lymph node on the right.
I think it is differentiated PTC. They felt confident and he still wants to do RAI bot instead of 102, plans on 140. I go in Monday to get stitches and hopefully the dran removed.

No, full right. I have a 6-7 inch cut from behind my ear going down my neck. My thyroid and center neck disection was tiny. It is about 2 to 2.5 inches in the front.