RAI Treatment

Updated on June 27, 2010
A.G. asks from Ogden, UT
8 answers

I am 37 and was recently diagnosed with thyroid cancer and had a total thyroidectomy a few weeks ago. I now have to make a decision about doing radioactive iodine. My tumor was just above 1 cm, so I'm in the gray zone (less than 1 cm they don't even recommend it). Love to hear about anyones experience with this, as I am nervous about doing it.

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S.V.

answers from Dallas on

I have a friend (27) went through the same thing. She had the iodine treatment. Made her very tired for a couple of weeks, but she is doing well now. I have heard that so many people benefit well from this treatment and go on to lead long, healthy lives.

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L.D.

answers from Las Vegas on

I had actually gone through RAI treatment last year for my thyroid cancer. As you are probably already aware, you have to be in seclusion for 5 days which, I actually looked forward to, to tell you the truth; I'm someone who craves alone time but rarely gets it. Anyway, I had just finished reading the book Eat Pray Love and it inspired me to use this time as my own personal yoga/meditation sanctuary time. Since I couldn't go away anywhere and neither could my husband or children, I basically took over our master bedroom and bath (my husband slept with the kids in their room) and we put a doggy gate up at the master bedroom door so that the kids couldn't just walk in. I stocked piled the bedroom with everything that I need from yoga DVDs, my ipod, art supplies, my guitar (I finally got around to learning how to play it!), books and magazines.

Anyway, the treatment itself was not a problem. The only physical effect that it had on me was that my tastebuds were off for about 3 to 4 weeks. And the low iodine diet before hand, although very hard to get used to, actually made me feel a whole lot better than I had in years. It must have been all of those fresh veggies that I was eating.

Anyway, I'm glad that you are in a gray zone and have a choice on whether you wish to pursue this type of treatment. The only thing that you may want to consider, if you are thinking about going the RAI route, is that you are not supposed to become pregnant for something like 2 to 3 years afterward and the doctor actually makes you sign something stating that fact.

Will be sending a healing prayer your way. Blessings.

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M.B.

answers from Boise on

My niece had the iodine and didn't have any problems. You do have to isolate yourself for 2 or 3 days because you are radioactive.

If it was me, I would do it.

M. B in Boise

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P.L.

answers from Salt Lake City on

What about the PTU pills? Ask about that (Poly thiouracil). While I didn't have thyroid cancer, they found nodules after by 2nd child was born and snice I was nursing it was the only way. That was 10 years ago and all clear My mom did the RAI at age 18,though and she is now a healthy 78!!!!

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S.B.

answers from Los Angeles on

My MIL just completed RAI treatment. It was not pleasant (the dietary restrictions prior to treatment are frustrating, and the treatment made her nauseous for a few days). However, there was no question in her mind about doing it. A couple of weeks of inconvenience v. cancer made the decision easy for her. It was not painful (certainly better than the surgery to remove the thyroid), and after about a week she was feeling 100% again.

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D.W.

answers from Indianapolis on

As a cancer survivor to a fighter, the one thing I heard repeatedly with my diagnosis was that thyroid is leaps and bounds the BEST cancer to get because it's so slow growing and tops the charts of curability. So, I wish you the best in successfully completing your treatment.

Right around the same time I was diagnosed with Hodgkins, the best friend of my college roommate was diagnosed with Thyroid cancer and underwent treatment that included Radioactive Iodine. She'd just had a baby (born at 28 weeks), and had a 3 year-old at home as well.

Today, she's doing great - she's past 2 years and clean as a whistle.
Likewise, the wife of a colleague was diagnosed with thyroid cancer a few years ago and received the same treatment. Also doing very well with no signs of recurrence.

Radioactive iodine is much different from radiation therapy (which I opted not to receive despite the recommendation of my oncologist).

My BEST advice if you're not sure, get a few other opinions. Ask your Oncologist who they respect and get their opinions. It was hard for me to do because I see THE lymphoma guy in Indiana. He referred me to two colleagues out of state who are also lymphoma experts and suggested NOT receiving radiation because of where my cancer was located.

LIVESTRONG!

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S.S.

answers from Salt Lake City on

My husband just had it a year ago. His tumor was slightly larger and being a young male, a higher risk zone than a female. He saw Dr. Abraham up near the Uof U who recommended NOT doing the FULL dose but doing a small dose. After a lot of study and consideration, we felt that was the option to take. He works with the neck surgeon we used up at Huntsman. The diet for the couple of weeks before are the most difficult part of it. The actual RAI is just drinking a little glass of water and then being secluded from people. He went to his moms house and stayed 5 ft. away from them but they took care of him with food etc. and I took the kids to my parents house so we had something different to do. It comes out of your body through sweat, urine or saliva so eat with plastic utinsils and plates and take them right out to the garbage. Also, our baby was crawling and we didn't want to risk him contaminating ANYTHING with sweat from feet or clothes etc. in our house. It will decay after about 10-14 days but I didn't feel I could keep everything clean perfectly so it worked best to have him go elsewhere. The day after he took the iodine, he could start on his real thyroid medicine and that is what helped him feel the best since his surgery 2 months before. One risk with doing the full dose of RAI is burning out your saliva glands so they don't produce anymore. That is why we were happy with the low dosage. If you have any other questions, email me and we can even talk on the phone. I don't think contamination is a certain cause... it could be genetic or even just a random thing. You will make it through and be grateful when the year is over. Sending blessings and prayers your way. Let me know how to help more if you want.

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G.J.

answers from Colorado Springs on

A.,

I just did a really quick Google on the subject of contamination where you live. If you have a thyroid tumor IT CAME FROM CONTAMINATION.

Perchlorate (an oxidizing compound in rocket fuel) has some nasty effects on the thyroid, and very often is found with fluoride.

It appears that you have a Defense Depot in Odgen...? Well, I can tell you that a similiar Depot in Colorado caused perchlorate contamination that has affected and continues to affect families there.

http://www.uswaternews.com/archives/arcquality/3utahas1.html

Here is a link re: perchlorate in the water in your area.

Have you had any dental issues, weight loss or gain, loss of hair or other tumors? I know your question was about the iodine treatment, but there's a bigger problem here than you may know.

Check out earthclinic.com for information regarding natural iodine treatments, and feel free to contact me.

Best wishes and blessings

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