Saturday, December 31, 2011

Public Service Announcement: RAI

Ok, call me the RAI Nazi, or whatever you will, but I feel very strongly about this and am deeply saddened (and mad many times) to read that people often don't take the necessary RAI precautions. When I say people, I mean both doctors and patients.

Before I come off as doctor bashing, it is important to note that both of my parents are MD's.
Okay if you don't know my "story", here's the quick version. (Bear with me, it's hard for me to not be long winded, but i'll try). Thyroid cancer, two tumors (both over 4cm), one Papillary, one Follicular variant. Had a TT, and large dose of RAI (154mci). Accidental pregnancy and sweet baby girl delayed my second scan. So, instead of doing the scan 6 months after my first one, it was instead 13 months later (time to have baby and breastfeed for about 2 1/2 months). This is where I am now. I had my RAI tracer dose (less than 5mci) on Wednesday. Today is Saturday and I am STILL in isolation.

Which leads me to my frustration about precautions.
Okay so with my first large dose, I was in isolation for a FULL two weeks and when I did go home I had another couple of days of limited contact. I tried to maintain 2'-3' away from my kids, slept by myself, and didn't hold them for more than 15 minutes at a time. Now, to some that may sound craaaazy, but nope. It wasn't. I know this because I went to the Nuclear Medicine department several times and had them geiger me. My levels were not safe until I went home (and the limited contact was necessary still per their recommendations). You can't dispute the numbers. I personally don't feel that it is "safe" until my body is emitting background numbers (about .02) up close. These numbers confuse me b/c they change (the decimal) depending on how sensitive they set the geiger. I'll give you my example of this later in this post.

Now, could some people who had the same dose as I did go home sooner and be fine? Absolutely! As you know (or will find out), our bodies get rid of the radiaiton in a variety of ways. It comes out in your pores, your sweat, your pee, tears, and yes, even your poo. It sloughs off on your skin as well as being disappated into the air. The half-life of radioactive Iodine is 8 days. So, if you didn't get rid of it at all in the aforementioned ways, and you had a dose of 100mci, you would be down to 50mci in 8 days, 25mci in 16 days, and so on. Luckily though, we DO get rid of it in other ways though! lol! You can help this process along by drinking lots of water and getting that through your system and showering frequently, etc.
Also, some people just naturally seem to hold on to it longer than others. I drank like a horse and my body still held on to it. It seems to be happening the same way this time. So, here is my example of my numbers this time around. My dose was 4.5mci, I believe. I took it on a Wednesday. My scan was 48 hours later. After the scan, I had her geiger me.
  • At about 4' i was at background (0.02)
  • one foot closer it doubled (.04)
  • then at about 6" or so, I was 10x background (.2)
  • and right up next to me was even more (.3ish)
What does that mean to me? That at 48 hours, it was NOT safe for me to be closer than 3' to adults for an extended amount of time, much less my children. It would not be ok for me to go home and hold my baby (4 months old) to feed her a bottle, to give my son (not yet 2 years old) his daily breathing treatment, or snuggle up to my 3 1/2 year old in bed at night (she still sleeps with us).

What really chaps my hide is that the doctor's office said I would be FINE to return home 24 hours after my dose, "because it is so small". Really? How am I fine to return home when I can't get my scan until 48  hours later and in order for this scan to "work" your body has to be emitting enough radiation for the machine to pick it up. In my book, if my body is emitting enough radiation from that, then I sure as heck don't want to be  holding my babies!! When I told my doctor's office that I have very young children, they said "oh, 48 hours would be better then.". Ok, thanks. However, if I told them that I am on day 4 of not being with them they would think I've lost my marbles and am being excessive. Call me what you will, but to me I am being safe. When it comes to my family and my children, I prefer for them to not be exposed to any unncessary radiation. It's just not something I care to do. The wonderful lady in the Nuclear Medicine department was very helpful and agreed with the precations I've taken this time (and last). I tend to go with her recommendations over my doctor's anyways since this is HER job, day in and day out.

Originally, I had planned on going home this evening (Saturday, after 72 hours), but after having my levels tested yesterday and watching the needle jump up and knowing my numbers, it just isn't safe yet. I could go home late this evening probably, but still would need to maintain the 2' rule and sleep alone. Well, I'm not good at keeping my kids at bay and let's face it, they miss their mommy and all three of them are snugglers. So are my dogs. Keeping 3 babies and 2 dogs off of me just wouldn't happen. I'm sure I could easily keep the husband away though, lol. He has been a rock star and has been caring for the kids solely since his mom left after taking care of them for the first day and a half. He's pooped and is ready for me to come home. I think he struggles with this b/c he doesn't fully understand it. I actually think most people don't truly "get it" unless they experience it first hand- as in being the patient.

I wish our bodies emitted a green light or something when the levels were too high and that when it went away, it meant we were safe again. It's very hard not being able to see this radiation.
It terrifies me to think about how many people are out there and haven't taken proper precautions either because they were given bad advice, or ignored good advice. Is it inconvenient to make the arrangements? Yes! Is it a hardship on yourself? Yep! Is it hard on others in your family? You betcha! Is it the end of the world? Absolutely not!

YOU are the one in control of what you chose to do. Again, call me crazy if you want to for being so passionate about this, but I just feel compelled to educate others as best I can- by relating my personal experience.

I'm sure I've forgotten something, but this definitely goes over the main points I wanted to express. Please feel free to comment if you have any questions or comments. You can call me crazy and it won't ruffle my feathers. I've been called much worse!


  1. Love this PSA! You ARE your own advocate and that is how it should be....and this is a nurse talkin' aren't crazy!!

    Thinking of you!!!

  2. I think this is awesome that your are willing to speak out and most importantly take part in your care. My spouse has had 2 heart transplants and I volunteer at the hospital helping establish patient family centered care. We were 26 when he had his first surgery and 8 years later he received his second I spent many hours during both and inbetween the surgeries finding out as much as I could about transplants. I think with the internet being so accessible many need to spend some time researching their concerns to discuss with their doctors. I understand the frustration with doctors who give conflicting statements from another doctor, or not listening to you. I can only say is your family is lucky to have someone who is willing to appreciate their lives and researched the dangers.

  3. I totally agree with this. I have thyroid cancer too, and had the same large dose as you, twice. Both times I was told I was safe to return home to my family(husband, three teenage kids, 3 dogs) and that I would just need to not have direct contact for a few days. I had read up on it though, and knew that wasnt right, and did much as you did, isolating myself for nearly two weeks.

    I also wish people took this treatment more seriously and knew how much safer it would be if to isolate themselves, even though it is a total pain.

  4. I am linking this to my blog so that when they do finally insist on RAI I can take the proper precautions. They wanted me to have RAI after my TT when my son was 9 months old and EBF. No thanks.

    Now.. how about your thyroid growing back?! Mine is, but I didnt have the RAI and my thyroglobulen is completely untraceable. I am NOT a good candidate for RAI. IMHO.


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