Radioactive Iodine NOT always necessary for Papillary Thyroid Cancer

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.

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

3 Comments

Filed under Papillary, Thyroid Cancer

3 Responses to Radioactive Iodine NOT always necessary for Papillary Thyroid Cancer

  1. Chris Bondurant

    Sparky,
    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.

    Blessings
    Chris

    • Hey Chris!
      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!!
      Love,
      Sparky

  2. Charlotte

    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.

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