Notes on radioactive iodine treatment for papillary thyroid cancer

(These are some notes that I originally wrote in May, 2014.)

The next step in the process of treating my papillary thyroid cancer is a radioactive iodine treatment. I’ll be going through this treatment process in a few weeks, and this is what I know about the process today.

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The radioactive iodine treatment process

From what I’ve learned from my endocrinologist, the process goes like this:

  1. The treatment starts about four weeks after the surgery.
  2. Two weeks before the treatment -- now, basically -- I need to start a low iodine diet.
  3. On Monday the week of the surgery I take a blood test and get a TSH booster.
  4. On Tuesday of that week I get a second TSH booster shot.
  5. On Thursday of that week I report to the hospital, where they’ll give me a dose of radioactive iodine. My understanding is that this is just a pill I swallow.
  6. For the next 3-4 days I’ll be radioactive enough to set off the radiation detectors at an airport (and even those on the interstates), so I need to avoid other living things, including humans and pets.
  7. Somewhere around 8-10 days after that, I’ll go back to the hospital for a full body scan, where they’ll look to see if the cancer has metastasized anywhere else.

Assuming that the full body scan comes back clear, somewhere around 4-6 months later they’ll test my Tg (thyroblobulin) levels to see if there is any indication that I still have cancer in me. If so, we’ll do the entire radioactive iodine treatment process over again. If not, I’ll be considered clear of cancer, and will probably just have to come back for tests every 6-12 months. (I’m guessing on that time frame.)

Note: An alternative to the TSH booster shots is to quit taking my synthroid thyroid supplements for several weeks before the surgery. Since I have been getting light-headed and passing out from time to time since mid-February, I told my doctor I didn’t think that would be a good idea for me. Also, I refer to the TSH shots as a “TSH booster”, but it goes by a different name that I don’t remember at the moment. I do remember that the purpose of the shots is to raise the TSH level in my body.

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About the radioactive iodine

Radioactive iodine is used because the thyroid processes iodine in the body, so what happens is this:

  1. We starve the body of iodine for two weeks.
  2. We jack up the TSH levels in the body with the shots on Monday and Tuesday.
  3. Once the radioactive iodine is in the body, any remaining thyroid cells should be hungry for iodine. They’ll attempt to process the radioactive iodine, and will be killed by the radiation. (Honestly, I don’t know why the radiation doesn’t kill everything else in the body.)

The endocrinologist told me that thyroid cells may still be attached to my parathyroid glands because surgeons don’t want to nick the parathyroids. Damaging them can cause the human body to quit producing calcium, and that’s also bad. She also said that cancer cells may have come free during the surgical process, and this radioactive iodine process will somehow kill them as well. (If the cancer cells are free from the thyroid cells, I don’t know how this works.)

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On being radioactive

As the cancer.org website states, “Your body will give off radiation for some time after you get RAI therapy.”

WebMD offers some interesting notes on being radioactive during this time, including these recommendations:

  1. Flush the toilet twice each time you use it.
  2. Wash your hands well with soap and lots of water each time you use the toilet.
  3. Use separate towels, washcloths, and sheets. Wash these and your personal clothing by themselves and not with other people’s laundry.
  4. You may want to use a special plastic trash bag for all your trash, such as bandages, paper or plastic dishes, menstrual pads, tissues, or paper towels. Talk to your treatment facility to see if they will handle the disposal. Or after 80 days, this bag can be thrown out with your other trash.
  5. Don’t cook for other people. If cooking is necessary, use plastic gloves and throw them away in the special plastic trash bag.
  6. Wash your dishes in a dishwasher or by hand. If you use disposable dishes, they must be thrown away in the special plastic trash bag.

My doctor further suggested drinking a lot of water during this time, and also suggested having some lemons or lemon juice available to keep my salivary glands going. Apparently you can end up with dry-mouth as a result of this treatment, and I’m told that is not a pleasant thing.

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Radioactivity warnings

Regarding being radioactive, WebMD states:

  1. People who have had radioactive iodine treatment can set off the radiation detection machines in airports for a week to 10 days.
  2. If you plan to travel by airplane within 3 or 4 days after your treatment, check with local authorities about any steps or permission you may need to travel.
  3. If you plan to travel on the interstate, you may set off radiation detectors. Most police and transportation workers are aware of medical radiation, but it may be a good idea to carry some paperwork from your doctor.
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Cancer spreading

There is a chance that the papillary thyroid cancer may have spread to other bodily organs. The most common organs for this type of cancer are the lymph nodes, lungs, and possibly the liver. If cancer has spread anywhere, the full body scan will hopefully show this.

In regards to how well this process works, the WebMD page states, “If you have thyroid cancer and you are treated with radioactive iodine, it may take from several weeks to many months for your body to get rid of any remaining cancer cells.”

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The future

For now that’s all I know. I’ll be going through the radioactive iodine treatment in about two weeks, and I’ll either update this article, or write a new article, after that time.

Also, I always feel the need to add that the survival rate for this type of cancer is very high, something like 95% over ten years. So while I’d certainly rather not have it, and despite them ominous sound of “radiation treatment” and being radioactive, this won’t be killing me any time soon.

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Comments

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I really enjoyed reading about your experience with having a thyroidectomy. I had a TT on Friday (5 days ago). I would love to hear how things turned out for you.

It’s a bit of a long read, but here’s a link to a diary I kept after my thyroid-removal surgery.

The short summary is that I’m fine now, which as a little over three years after the surgery and radiation treatment. Probably the biggest issue I had in the months after the surgery was getting the synthroid dose correct.

I also had some problems getting my insurance company to pay for the shots they normally give you before the radiation treatment, so my doctor had me stop taking the synthroid until my TSH levels went extremely high, which is what you need for the radiation treatment.

One thing I’m going through now is a “mast cell activation disease,” but I have no way if that’s related to the thyroid cancer and treatment. I mention that because it may have caused my calcium levels to become high, and when that happens the doctors will suspect a parathyroid problem.

Good luck and best wishes to you on your recovery!

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