Hi All, Sparky here!
Please note that thanks to extensive research regarding Papillary Thyroid Cancer, radioactive iodine (RODI) is not always necessary unless your doctor clearly states otherwise/it looks like the cancer spread to the surrounding lymph nodes. Studies have shown that Papillary Thyroid Cancer is less likely to spread.
Here are some articles to review, and PLEASE discuss this with your doctor. I have been getting a few stories lately where people are prepping for RODI, and I realized I had not brought this up although my doctor mentioned it two years ago. My endrocrinologist is a UCLA professor and is very in touch with the latest research. I’m always hesitant to mention any type of medical “guidance” but there have been enough studies to conclude that radioactive treatment is not always necessary after a thyroidectomy for Papillary Thyroid Cancer.
- 2015 American Thyroid Association Management Guidelines for Adult Patients with Thyroid Nodules and Differentiated Thyroid Cancer: The American Thyroid Association Guidelines Task Force on Thyroid Nodules and Differentiated Thyroid Cancer.
Link to PDF of entire study: ATA 2015 Guidelines for Adult Patients with Thyroid Nodules and Differentiated Thyroid Cancer
- Recurrence of papillary thyroid cancer after optimized surgery
- Radioactive Iodine Overused in Papillary Thyroid Cancer
- Radioactive Iodine Treatment Should Be Used in Some but Not All Cases of Papillary Thyroid Cancer
- Papillary Thyroid Cancer: Active Surveillance May Be the Best Choice
After my surgery 7 years ago, I chose to NOT do RODI (before all this research came out). I wanted proof that the cancer had spread before I went and did anything that serious. Again, with my doctor’s approval, we chose to wait and see. Then research came out that papillary thyroid cancer is unlikely to metastasize (spread) (and I had a pretty large tumor, too). I’ve been cleared of any cancer (got my blood tested every year for five years, and it is a very slow growing cancer so I wasn’t worried about any alarming growth) and am confident in my decision.
Again, this was my choice and there is a lot of research out there to consider and talk about with your doctors.
Thank you for reading and thank you for being here. <3 On a side note, I'm 7 years thyroid free and doing damn good. If only I could quit the carbs haha
8 Responses to Radioactive Iodine NOT always necessary for Papillary Thyroid Cancer
Thanks so much for creating this blog. Its been a great source for me to gain positive information in such a weird and confusing time in my life right now.
I am scheduled for RAI next Tuesday and have stopped a taken note with the postings about second guessing this treatment. They are very interesting. My ENT never discussed any options or really anything at all about the RAI treatment after surgery. I just thought that it was just part of the normal procedure after surgery. I was curious why you had not had these treatments after your surgery. The Ultrasound of my cancerous nodule, before surgery, did not show any other surrounding nodules or Lymph Nodes that had been in question. The doc said, after surgery, my 1.5 ml nodule that was on my Thyroid was pretty clean and simple. Bottom line is one and done I’m thinking.
What has really gotten me worried from the articles you posted is me reading about possible damage to my taste buds and also my salivary glands.
That would be disastrous for me! Beings I live to eat and also have had a ton of dental work already in my life. Are you kidding me, going on a cruise and not being able to taste any food! Have you heard any feedback from anyone who has undergone the RAI and have had complications with these issues? I am probably going to at least have the full body scan next week to see if any cancer has spread to any other parts of my body. At that point, from the results we get, I can decide if I continue to get the full brown radiation the next day. Uhg. If the scan does not show any other signs of cancer in my bod, I probably will just pull the plug, no matter what his recommendation might me. Even if its just a 5 or 10% better chance of going long term with any other signs of cancer. Whew. I’ll take that extra 5 or 10, just so my quality of life doesn’t go down the tubes. Give me your thoughts on this whole deal if you can. And once again, thanks a ton. for your effort and time for keeping this site going.
I don’t hear a lot about the side effects of RAI, honestly. I love food, so uh that is a pretty big side effect concern.
I say, get a second opinion, show this info to your doctor, get some more feedback. No harm in delaying the treatment for a few weeks or months; it’s a super slow growing cancer so putting of RAI to do more research is pretty safe (again, check with your doctors for guidance).
Just confirming, you had papillary thyroid cancer?If you had any other type of thyroid cancer, please note that these studies are not applicable.
I’m not familiar with nodules being sized as milliliters; mine was several centimeters large. They said I must have had it for years, since my tumor was so big. LOL
Have you had your blood tested for cancer? That is also another way to detect cancer. Maybe do both a blood test and full body scan to be extra sure. Sounds like you are taking some good next steps.
The reason I chose to not do RAI 7 years ago was twofold. First, RAI pills were on severe backlog and it was a six month wait. Second, I did a ton of research and felt that because I had papillary thyroid cancer, the tumor was contained, and I would have to undergo blood tests for the next five years to detect cancer, I didn’t want to be bothered with the inconveniences and concerns that come with RAI.
I figured if any of my tests detected cancer in the future, THEN I would do RAI.
Again, my personal choice. Then on the fifth year, and my final blood test for cancer, my endo told me that these studies came out about papillary thyroid cancer being reduced down to ‘malignant tumor’.
It’s crazy that with fine needle aspiration, they can detect even the tiniest of ‘tumors’ , that may never even grow, and people don’t even need to get thyroidectomies anymore! They can just have it monitored annually. Sadly, mine was pretty large.
Lots of options out there!! PLEASE keep us updated!!
Just had a total thyroidectomy 3 days ago. I too am sure some changes are going to take place, although I’m hoping they will be subtle. Anyway….surgery went well and it’s not as bad as what we always make it out to be. Stop reading whatever your reading before your procedure. As soon as I arrived home from my overnight stay in the hospital, I started asking God for healing. To take away any swelling/discomfort. The next morning, swelling was way down, no discomfort. I know some do not believe in the power of prayer, but, it works. I almost feel as though I never even had the surgery. I pray everyday for his healing. Not sure what the pathology will reveal, but I’m hopeful.
Hi Charlotte, hope you are feeling good after your surgery on May 2018, I wonder if you can give us an update about how you feel now. Do you stiil feel good after 6 month? Many thanks, Jean
Before my surgery, my surgeon said he recommended a TT and not to mess with any radiation because later down the road it could lead to problems with other organs in my body and he didn’t want me to go through that. This was before we knew it was cancer. After the TT, they tested it and it was Papillary carcinoma stage 3. He said my options are RAI or just keep check on it every 3 months for the next year. He said if he had to decide for himself or a family member, he would just monitor it and stay away from the RAI. My surgeon is so against the radiation. So I’m not doing the RAI.
I’m glad, too, because I wouldn’t want to go through it. It’s been a month now since the surgery and I feel good. I’m back to exercising again and my scar is so small, considering he said it was the size of a tennis ball! He had to cut it into 3 pieces to get it out. He didn’t damage my parathyroids, so I don’t have to worry about taking calcium pills. The very next day after surgery, my voice was clear and sounded perfect just like before the surgery. He did a great job! My surgeon is in his mid sixties and has been removing thyroids for over 30 years. He does hundreds a year. My best advice is to look around for best surgeon possible. He also held my hand and prayed with me right before the surgery. When it was over I thanked him and he wouldn’t receive the glory, he said God gave him his hands and talent and he gave the glory to God.
I think if you’re going through this, be 100% sure you need radiation, that it’s a must and not something they’re doing just in case. A good surgeon will understand and have your best interest in mind.
Hi. I am wondering if this thread is still active? I love what I am reading here and everything else I google scares the @##$ out of me. I am 6 days post TT. Papillary large removed. They tested lymph nodes and they were negative. Surely don’t want RAI and still have to wait on endo weighing in. Surgeon was super positive and said this is the ‘best outcome’. I am 65 and this was brewing for a long time and dismissed by other doctors so I am upset about that…..but still the surgeon said I don’t know that you would have had a better outcome 3 years ago. I am recovering quickly and feel pretty good today. Would love to hear from someone about how to manage these early days! Thank you!!
Yup, still active and there is a lot of new research out there about thyroid cancers, especially papillary thyroid cancer. 🙂
Thanks Sparky! Had meeting with Endo today. No spread, no effusion, very large though but it was totally contained and removed. 3 nodes sampled all negative, bad parts were all far away from blood sources. Stage 2 (would be stage one except for my age, 65). Regarding RAI, he said the ATA guidelines suggest it be ‘considered’ but I am am at low risk for recurrence. Probably going to choose just to just to be followed and checked regularly. He said the studies show that RAI may not really be effective and surely can cause secondary cancers that can be more dangerous as well as the other side effects. I am now 3 weeks out from TT and have to wait 3 more weeks for my first blood test. Any advice on hormone replacement meds? What have you learned over the years? I am currently on 150mcg of Levo, he said he would want me to be on the hyper end so we will work toward that end. Thanks again, your info has been so helpful to me!