RAI – I 131

Many of you know that I recently received RAI but might wonder what it is and what it was like. Now that I’m home and have access to the computer I thought I’d fill you in on my adventures the last few days.

RAI also known as radioactive iodine is the primary treatment for thyroid cancer. The success rate is amazingly high. Iodine ingested into our bodies is used by the thyroid in the production of thyroid hormones. The thyroid is in charge of metabolism. Prior to RAI, patients have a few weeks with a low iodine diet. This prepares any thyroid cells (regular or cancerous) to suck up any iodine that enters the body in its iodine deprived state. The iodine in this treatment is radioactive so the theory is that the thyroid cells that suck up this iodine are killed by the radioactivity. In my case, I had a total thyroidectomy (TT). Despite the TT there was the possibility of thyroid tissue/cancer cells that may have been left behind. The idea is that the RAI will kill any of those cells. In the future this will also be instrumental in checking for recurrence as any thyroid cells in my body will be a clear indicator that there is a problem.

What was RAI like? It was like no hospital stay I have ever had. I was admitted (after much confusion – who gets admitted without a surgery?) and taken to the top floor of the hospital. The door to my room was not exactly welcoming! 

The floor was draped in paper, 

the remote and phone were encased in plastic bags,

and the door handles had rubber gloves tied on them. There was a large trash can with a red, hazardous waste bag inside.

I met with the nurse who gave me a gown and some large plastic bags. All my belongings that I wanted to take home with me went in the plastic bag, into a metal drawer – no touching allowed. Anything I used would stay in the room – my toothbrush and books would be left behind. I met with nuclear medicine and radiology who discussed what my next few days would be like: no visitors, flush 3 times, all food served on disposable plates/trays to be thrown in the red lined trash bin, nurses would come in briefly but wouldn’t stay to chat and would be in full protective gowns. We also discussed my discharge rules: days 1-5 maintain about 6 feet from family, days 6-10 maintain about 3 feet from family, spouse in a guest bedroom, no sharing a bathroom with the rest of the family, disposable plates/silverware/cups for me.

This is a photo similar to what I took. My phone was safely
stored away so that it could come home with me!

Finally it was time for that lovely blue pill. My radiologist called it the “magic bullet” because it does such an amazing job at curing thyroid cancer. Everyone cleared out of my room except the nurse from nuclear medicine. She opened a lead box and removed a smaller lead box. That box was opened to reveal a closed vial with the pill inside. She handed me the vial with lead tongs and instructed me to swallow it. Done. I then had to drink more water to make sure it wasn’t stuck in my throat anywhere. She quickly left and the door was securely closed (no window on my door). So my isolation began. My nurse came in with meals and that’s about it. She would peek in the door and ask if I needed anything but there was not a lot of chit chat. Nuclear medicine came in with a Geiger Counter to find out where in my body the pill was – that was weird. After 2 hours I was encouraged to drink, a lot, to eliminate the radiation from my body. The faster my levels of radiation went down the faster I went home.

Wednesday arrived and my levels were dropping but unfortunately at the end of the day I had one reading that was close but not quite low enough. The right side of my neck (where the cancerous nodule had been located) was still too high. I was doomed to another night in the hospital. The good news was that by Thursday morning my levels were at an acceptable/legal limit for me to leave isolation and go home.

There are very few side effects of RAI – I suffered a few in very minor ways. I have had a little bit of nausea, a bit of stomach upset, some loss of taste (loss of taste is replaced with a metallic taste, which I notice when I drink water), and a little bit of neck soreness. All in all some minor inconveniences when you think about other cancer treatments.

What comes next? I’m eagerly counting down the days until I can hug my family (9 days). I’m looking forward to going back on Synthroid (2 days). Anticipating the end of the low iodine diet (2 days).  Ready for the full body scan that will show where any uptake of the RAI occurred- we are hoping for the neck only, where we expect it to be – lungs or other places in the body are bad as that would indicate that the cancer has spread. We have every reason to believe that it did NOT spread (5 days).

I’m sorry to report that I don't glow in the dark and I haven't developed any superpowers, but I have gained an appreciation for human touch (missing it), felt cared for by the hospital staff (thanks), and feel completely loved by my family and friends (I have amazing people in my life).