so… as a final step on my thyroid cancer agenda, i begin radioactive iodine therapy tomorrow morning.
did you know that your thyroid glands absorb nearly all of the iodine in your body? so, when radioactive iodine (RAI), also known as I-131, is taken into the body in liquid or capsule form, it concentrates on thyroid cells. the radiation can destroy the thyroid gland and any other thyroid cells (including cancer cells) that take up iodine, with little effect on the rest of your body. most of my thyroid was removed in the two surgeries i had, but we know from recent blood work that some cancerous thyroid cells remain – the RAI will destroy them.
for RAI therapy to be most effective, patients must have high levels of thyroid-stimulating hormone (TSH or thyrotropin) in the blood. this substance stimulates thyroid tissue (and cancer cells) to take up radioactive iodine. since my thyroid has been removed, one way to raise TSH levels is to not take thyroid hormone pills for several weeks. this causes very low thyroid hormone levels (a condition known as hypothyroidism), which in turn causes the pituitary gland to release more TSH. this intentional hypothyroidism is temporary, but it often causes symptoms like tiredness, depression, weight gain, muscle aches, and reduced concentration. sounds lovely, right?
my body will give off radiation for some time after i receive RAI therapy. so, from May 31st – June 3rd i will be locked in my bedroom “isolation room” to prevent others from being exposed to the radiation. thank goodness i have so many episodes of this to watch! ::winks:: and of course – my computer + a stack of books will be with me. i’m telling myself this is great – three days to relax, and rest… what mom doesn’t want that?!? only, if you know me — i am going to go CRAZY! i LOVE being non-stop busy. i will be dying to go to hot yoga, dying to go to the gym, dying to get outside. i am attempting to get most of our packing for the upcoming move done so i won’t be impatient to be busy preparing us to leave. and, it’s the most beautiful time of year — i’m going to miss an entire weekend/three days with friends and family out and about in boston!!! ugh.
of course – the sacrifice of being isolated is totally worth it. i should be cancer-free after RAI therapy.
thyroid cancer patients with papillary or follicular thyroid cancer {what i have} usually receive a dose of radioactive iodine (RAI) about two months after their surgery in an attempt to destroy any remaining thyroid cells in their bodies.
following RAI therapy, i will undergo a whole-body radioiodine scan in early june. if my scan is not “clean,” i will then receive treatment with a larger dose of RAI in an attempt to eliminate remaining thyroid cells. but it seems one treatment of RAI therapy should work for me.
in preparation for the RAI scan and RAI treatment, i will begin a low-iodine diet (LID) tomorrow morning at the same time that i stop taking my hormone medication. the purpose of a low-iodine diet is to deplete the body of its stores of iodine, to help increase the effectiveness of the radioactive iodine scan/treatment. the premise is that when the radioactive iodine is administered, the thyroid cells will “suck” up the iodine, because the body has been so depleted.
so, wish me luck. husband is currently traveling for work, i am planning to mentally ignore the symptoms i am supposed to experience. i plan on going about life like none of this is happening. ::smiles::
if any of you have recommendations for quick & easy low-iodine meals, i’d love to hear. i did three days of the blue print cleanse this past week to prep my body for this, and i plan on doing it again during the time i’m on the diet, because it’s low-iodine it will be an easy way to follow the diet for three of the ten days.
i am so close to being cancer-free!
remember: my thyroid nodule was discovered during an annual physical two years ago. take care of your body. go to the doctor.
xoxo.
Good luck with the isolation days. Thank you for the education about iodine therapy; I read up on low-iodine diets, and it sounds like quite a bit of salad is in your future. 🙂 I’ve been buying some really nice cauliflower at the store lately. It is delicious roasted in the oven or grilled – just add some olive oil, pepper, sea salt, red pepper flakes, and finish with some lemon zest.
Oh – NOT sea salt. Non-iodized is OK. Is it marked in the store?
Good luck with everything!
Good luck Jane! You have an amazing attitude and I am so glad you are almost cancer free!
Before I was diagnosed with hypothyroidism, I was sick for months. Dizzy ALL THE TIME. Like, basically whenever I was awake. Queasy. Tired, achy, etc. I get the same way now if I miss even one day of my pills. Looking back, the doctors should have tested my thyroid first thing. And the TSH didn’t really show anything- I always insist on getting the T3, free t4, etc. tested as well because they give a bigger picture.
Hang in there! I hope the treatment goes well and you are soon cancer-free! 🙂
Hey, sweet friend.
First, I just need to say again how very sorry I am that you are going through all of this. I wish I were closer to help ease some of the burden. But
I just want you to know how very proud I am of you for the way you have gracefully handled this whole situation. I have always (and continue to) admire so very many things about you… One being the way you tackle things, head on, jumping in with both feet while still maintaining a pleasant smile, even through the “not-so-pleasant” parts. And always with such poise. I am so grateful for your example.
Please know I am thinking of you and will be sending positive thoughts your way! I hope this isolation is somehow tolerable (and dare I even hope moderately enjoyable?!) and know it will be worth it! I just can’t wait for you to BE and FEEL well! You deserve it! You have kicked cancer upside down and backwards! Way to go, girl!
~Hugs from your soon-to-be home town!
Thanks for this post. I begin my RAI therapy in the morning. Best of luck to you.
sending lots of healing thoughts your way! 🙂
I admire your bravery and openness. I hope it brings positive energy, healing and grace to your process. I will send some your way.
Good luck! My mom did her treatment about 10-12 years ago and has been cancer-free since 🙂
i suggest jolly ranchers and lemon drops – one an hour the whole time you’re on isolation lockdown. it seems to keep the nausea at bay, as well as flushing out as much of the radiation from your jaw and salivary glands. good luck!
you are my hero. i hate that you have to go through all this! hugs your way!
Wow! I just stumbled onto your blog and I am too dealing with thyroid cancer right now! I’m 31 and have an 18 month old daughter. I was diagnosed with papillary thyroid cancer that had spread to lymph nodes. I had a lump on the side of my neck it acted like a swollen gland at first and when it didnt go away we asked the doctor about it back in February. I went for a cat scan a week later and they couldn’t determine what it was so it was biopsy time. I had the lump removed on March 6th and found out on March 11th that it was cancer in my thyroid that had already spread. Very uncommon way for this to appear and show its ugly head. I was quickly scheduled for a total thyroidectomy on March 20th.
I then finally actually met with an endocrinologist. We have no idea when or if I had any symptoms of being tired or weight gain or loss because before all of that I had been pregnant and then breast feeding and then was a working mom! We set up my RAI treatment and I was taken off my low dose of synthroid and started the lovely low iodine diet! I haven’t been in the best shape of my life but I was by no means in the worst either. I actually lost a little weight from the diet even because I was forced to watch what I ate. The hardest thing for me was not eating dairy. I LOVE cheese! I had my treatment last week. I went for my small dose of 131 on Monday 13th and had my scan (very cool to see how the iodine goes right to the thyroid tissue) and received a 125 mcg of 131. My daughter had to go away for this whole treatment which has made everything worse. My husband slept on the couch while I hid out in the bedroom! Tomorrow I go back for my follow up scan and I just weighed myself because I’ve been feeling very swollen and puffy. I gained 12 pounds in a week and a half! Worst feeling in the world feeling so out of control of your own body! I just wanted to wish you luck and tell you if you have any questions or need to vent or talk I’m here I’m looking forward to finally seeing my daughter after 10 days tomorrow! Best of luck and cancer and thyroid problems SUCK!
I’ve been a reader for a while, but this post brought me out of anonymity. I just want to wish you the best and speediest recovery… and to recommend a few of my fave feel-better movies: Fever Pitch (go sox!), 10 Things I Hate About You, 500 Days of Summer, The Princess Bride, & anything (and everything) by Nancy Meyer.
Best,
K
i wish you the very best! my little brother has just had some of his thyroid tissue taken to see if it’s cancerous or just not working…so he may be looking at this procedure in the future. thank you for sharing your journey, and for your optimism and cheerfulness! you rock, but sitting around doing nothing pretty much does not rock. 🙂 but like you said, totally worth it!
lots of happy thoughts heading your way sweet Jane! I wish i could help you with your kids or help you with your diet! Praying for you!!
Hello stranger! I had no idea what had been going on with this cancer business until I got your Christmas card (thank you, BTW!) as I had not been checking your blog frequently enough. You have always been a great example to me of self care. And thank goodness you do take care of yourself because it allowed you to catch things early. I’m sorry you have to go through this… the surgeries, the radiation, the synthroid roller coaster, which I know a bit about myself. You have such an amazing attitude. I will be thinking of you, during your isolation, your move, and everything else you are taking on this summer! I miss you!!
Praying for you!!!!!
Good luck! You are such a good example of positivity! And a little break will be so good for you! I am vey curious about the blue print cleanse?? Can you tell me a bit more about it?? Prayers headed your way!
Hi Jane
I’ve only been reading your blog for a few weeks but this recent post took me back a couple of years and i just wanted to say, “it’s going to be OK”. After 7 years of hyperthyroidism and Graves disease, a surgery to remove the thyroid, i got diagnosed with papillary cancer. i had not one but two rounds of the I131 and have been cancer free since December 2011. Even better i became a mum in October 2012. The treatment is gruesome, the isolation is tough and i don’t know about the US hospitals, but here in the UK, i felt like i had cholera or some sort of really contagious disease. meals were passed under the door, the nurses wouldn’t come anywhere near me and everything i had brought into the room got destroyed. my advice to go through it is watch lots and lots of stupid TV, do not allow your brain to think too much and drink PLENTY of water. the more you drink, the quicker the iodin will be evacuated from your body and the quicker you’ll be allowed near your husband and children afterwards. Also bring music for the scan, it takes absolutely ages!
wishing you all the very best! xx from across the pond
Hi, Had my RAI a week ago. I feel amaze balls!!! No side effects. Working out like a mad women. Hoping that when I do go hypo I will not gain much weight.. This journey is shared by so many… It’s trying at times, but we are women we are strong!!! Best wishes to everyone.
Pammy
My thoughts are with you Jane !