Based on my case, my husband and I knew that we were in a grey area for needing RAI treatment. After some waiting for pathology findings, talking to my endocrinologist, and a lot of back and forth we decided to proceed.
**Disclaimer: I am not a doctor or specialist in cancer treatment, this is just MY own experience with radioactive iodine. Please, always consult your medical team about treatment and RAI safety standards (which vary per case and on what your dosage is).**
My Cancer Findings
A little bit of background on my case and the factors that led me to choose RAI treatment. Pre-surgery scans showed 3 nodes, one on the isthmus and a smaller node on each lobe. Based on the biopsy in July I have Papillary Thyroid Carcinoma on the isthmus. Confirmed by pathology a 2cm node on the isthmus. The other two lobes were not cancerous. Surgery found my tumor was almost completely encapsulated but had attached to the strap muscle. As a result, the surgery removed a tiny sliver that was being touched by the tumor. The pathology found 2 of the 3 sampled lymph nodes had microscopic cancer cells, and later results found the BRAF e600v mutation.
LID (Low Iodine Diet)
Ten days before RAI therapy, I had to start a low iodine diet. Since so many processed foods have salt and I can’t verify if a company uses salt with or without iodine, I had to make all my food from scratch. On this diet you cannot have: iodized salt, seafood, no more than 6 grams meat, milk & dairy, soy, and sadly no rhubarb.
If there’s enough interest I’ll do a post of a few of the recipes for what I made for LID. Knowing how to make my own bread was . Even if you don’t know how, this recipe from Bluebird Kisses is so easy. No bread making experience needed, 4 ingredients and 5ish minutes of prep, let sit overnight, then bake in the morning.
For breakfast I had bread with avocado and tomatoes with salt, pepper, olive oil, along with a grapefruit. I usually eat salads for lunch, I just couldn’t add cheese and had to make a vinaigrette. Dinner, I could have changed it up but mostly I had my tomato instant pot chicken. For snacks, I had unsalted corn chips or apples with unsalted peanut butter (but poured in some no iodine salt).
I missed cheese salad dressing, but other than that, I was able to alter how I prepared foods so it worked with the diet and how I normally eat. Halloween fell in the diet timeline so I was craving candy like crazy even though I usually don’t eat Halloween candy – your mind wanting what it can’t have!
On a Monday morning my brother drove me into Boston and I had pre-treatment injection of Thyrogen. Thyrogen makes your TSH (your cancer suppressant hormone) skyrocket, so it’s an anti-suppressant, which will help the radiation target cancer cells. Since I’m prone to nausea, it made me nauseous, but otherwise wasn’t too bad. Tuesday morning I had my second injection plus a tracer iodine pill (I-123) for my scans. Wednesday morning we spent a little over an hour doing scans then it was time to go nuclear.
It wasn’t as dramatic as I’ve read in other posts about it. My husband had to leave the room, then they took the pill out of a small lead hand held safe. The doctor put the pill in a small cup, I couldn’t touch the I-131 with my fingers so had to use the cup without spilling it on the floor to swallow it. It was a little sticky so it was kind of tricky to get it positioned in my mouth so it wouldn’t go down perpendicular. I swallowed the pill and we went home.
Based on my 30 mCi dosage was instructed 2 days of isolation, 3 days away from small children and pregnant women. We added an extra day to each as an added precaution. **PLEASE defer to your nuclear medical team, they know your dosage, state regulations, your case, etc., which will determine your isolation.** This was about half the time we were expecting, so it was a nice surprise.
After taking the I-131 pill, you are emitting radiation and have to take various precautions to not expose others to radiation. The majority of it will be eliminated within the first 48 hours, again depends on the dosage, for me it was the first 12 hours through your pee, sweat, saliva. Make sure to drink a lot of water and pee often so you are eliminating the radiation.
You must keep your distance from people. Aside from distance you must make sure to flush the toilet a few times after peeing to make sure radiation is washed down. Wipe down the shower afterwards, if you have a cold flush the tissues so you don’t have to bag them and hold onto them for months.
Clothes can go in the washer, but rinse it two or three times. Use normal plates and silverware and wash it, rinsing a few times, after each use. Anything you think may be contaminated that you can’t clean, triple bag and store somewhere remote in your home for 2 months before throwing away with regular garbage. This radiation does not travel through walls so you don’t have to worry about your family being in the next room and exposing them.
Luckily, we have pretty good setup in our house where the guest bedroom is next to a bathroom at the end of the hall. We planned on me staying at my fathers because we thought it might be too much for the kids, but realized I would like to eat during my isolation period and thought the diet and time would be too much.
I must add, DO NOT stay in a hotel. In many states it’s illegal to do so. Aside from that, you are putting the hotel cleaning staff in danger as they are not aware of the situation and could contaminate themselves by touching bedding, etc. It may seem like the easy way, but it’s not safe. I know it’s not easy, especially with small kids, but it’s dangerous. I’ll get off my soap box now.
We got out an old baby gate and realized it was an inch too short for the space so we just tipped a table on it’s side and that was our barricade. Talked to the kids A LOT the week before about safety and we only had one incident the first day when Kat tried to walk around the table. Reece is a rule follower, and Kat follows his lead.
The only side effect I had (probably because it was such a low dose) was overnight the first night, burning at my incision. I was woken up by Kat crying for me (for two hours, so sad!), but if she hadn’t woken me I probably would have slept through the pain. I was also tired during isolation, but it seemed to be more due to inactivity – no cooking, cleaning, taking the kids here and there – I’m not used to being inactive all day.
I mostly watched Netflix, binged on potato chips once I was allowed off the low iodine diet, and did some PT for my knee and hip (thank you college tennis and pregnancy). I also made sure to shower every day and rinse the shower afterwards to wash off any radiation I might have eliminated through sweat. Except for the one scare of Kat almost walking around the barrier it was pretty uneventful.
And Then My Isolation Was Over…
A week after glow day we drove a forth and hopefully, final time, to Boston for my scans and everything was where it was supposed to be and how it was supposed to look. Now I just have to maintain my T levels and continue to monitor. So, fingers crossed!
I’ve also written about my initial shock of a cancer diagnosis, life the two weeks before my thyroidectomy (total thyroid removal surgery), and the first four weeks after surgery if you want a little insight into someone’s cancer journey.
For more information about RAI treatment, the thyca.org site has amazing resources. If you have questions, comment below or email me. No question is too silly, weird, or awkward. I probably wondered or worried about the same thing.