Tuesday, October 19, 2010

Solitary Confinement or Radioactive Iodine Treatment!

Even the most careful surgeon is unable to remove all the thyroid tissue when doing a total thyroidectomy, consequently follow up treatment with Radioactive Iodine is extremely common for papillary thyroid cancer, basically killing any thyroid tissue left behind or which has spread to any other part of the body.

When I finally saw the head and neck oncologist he agreed with the endocrinologist that this should be undertaken as soon as possible. Ahah! Everyone was on the same page for once and this was put into motion, with me opting to stay at home rather than be hospitalized during the isolation period, which I will talk about later.

The thyroid gland accumulates iodine which it uses to produce the thyroid hormones required for normal body function. But the radioactive iodine or iodine-131, by virtue of its beta particles, causes mutation and death in any cells which it penetrates, and other cells up to several millimeters away. Naturally you want the thyroid tissue to take up as much of the Iodine-131 as possible so preparation for the procedure is very important. This involves being off the thyroid hormone replacement drug and on a low iodine diet for a period of time so that the tissue has little iodine already.

Being without the drug surely makes you feel like a washed out dish rag and since the surgery I had been seriously hypothyroid. But now I had the added complication of eliminating iodine from my diet and all this with three house guests and people coming and going for dinner as they came to visit with my daughter.

Thank heavens for the internet as I found so much information there about eliminating iodine from the diet, including a low iodine cookbook. Unfortunately you can't eat bread bought in a store and my bread machine had died some time before, so I chased down a new one and began making iodine free bread.

One of the most difficult things for me was not eating dairy products. I eat a lot of yogurt and I mean what do you put on your porridge, which you now have to consume for breakfast as eggs along with so many other things are forbidden. No milk. Nope, no soy products, so soy milk and yogurt are out but fortunately Kosher salt easily replaces iodized salt. No fish. Virtually no canned goods. For two very long weeks I watched everything I put into my mouth with this in mind. It wasn't easy but manageable thank goodness.

To add to my problems, two days before my first RAI appointment my car died. It needed a new transmission but since it was 16 years old and the transmission had already been replaced once I decided that I deserved a new car. Then was not a good time to look at cars, so we managed with only one for a few weeks.

The OS is perfectly capable of making breakfast and lunch but dinner seems to be beyond him. So before I started the RAI treatment I made three days' worth of dinners which he could reheat and serve while I was in isolation.

After ingestion of the Radioactive iodine which is dissolved in water, the patient becomes very radioactive and must not come into contact with anyone else for three days, except for very short periods of time and this was done in a hospital setting for many years. More recently, provided the patient has a separate room and bathroom, one can opt to do it at home and I did that since it would be more comfortable and I could have it done more quickly without waiting for a hospital bed.

The first part of the treatment is a small dose to see that the RAI is taken up by the thyroid and how much. After 24 hours the patient returns and the level is measured. If all is well, the larger dose is given and the isolation period begins. One week later the patient receives a whole body scan to see where the RAI is located in the body, if it is in places other than expected it would mean that thryoid tissue had spread to other parts of the body which would not be good.

Firstly I had an interview with the nuclear medicine doctor but since there is so much on the internet about it and I had read a lot of it, I didn't learn too much of interest from him. The nuclear medicine technologist was a very good practical resource though, since she had been doing it for more than 25 years. She gave me the first small dose and then I returned the next day to be checked. Everything was a go and I swallowed down the larger dose and hurried home to begin my three days of solitary confinement in my bedroom.

So began three very long days for me. RAI is excreted for the most part through urine and feces but also through your sweat, so everything you touch is potentially contaminated. So no computer! Ugh! Three days totally offline for me! I can't remember when that happened last. I watched old movies on TV using the remote but wearing vinyl medical gloves to touch it. I read five books in three days. I walked the 18 feet length of the bedroom up and down or lay on the bed. I counted down the hours. I drank lots of water. The OS delivered food to the door regularly but I had to wash my own plates. I had to suck almost continuously on sugar free hard candies to keep the saliva flowing, since the salivary glands also take up iodine and this can cause problems there.

Three days doesn't really sound so bad, does it? But that last day seemed never ending to me. Finally it was over and everything I had worn during those days and all the bedding had to be washed thoroughly and the bathroom cleaned thoroughly. I still kept a fair distance from everyone for another week but at least I got to range farther afield than my bedroom.

Seven days after the dose, I had the whole body scan which required laying still for 35 minutes while the machine ran both over and under my body. Sigh. Not only that, after the machine moves past your head you can watch the whole process on a screen. I asked the technologist if she minded answering a few questions. She said ask anything, but the results of the scan. But in the end, she put the whole thing up on the computer screen and showed me where you could see the darker areas of the iodine concentrated in the tissue and it seemed it was in the expected areas only.

When I left she handed me a letter to carry with me, in case I set off anything when going through security in the following three months. Yes I just might set those security things a-clicking even now.

As expected, the RAI was concentrated in the thyroid area and despite it being a very effective treatment to kill the leftover thyroid tissue, it was now suggested that I should have external beam radiation to that specific area. Just to make sure. Sigh.

Well that's another story.

Part one, Part two, Part three, Part four, Part five in the saga.


Rositta said...

I am so glad that it all went well for you. My DIL also chose to stay in isolation at home but she had the whole basement to herself. My son is also a good cook so she got fed. The only difficulty was their three year old couldn't quite understand why Mom was down there instead of upstairs with her. I on the other hand couldn't understand why she had to wait almost six months for that treatment...ciao

Sarabeth said...

You have been through so much. Here's a virtual hug for you.

CherryPie said...

You have been going through a lot. I can't imagine three days like that either.