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RAM7007's Message Board Messages

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new here - RAI

by RAM7007 - March 08 at 7:19 PM

Hi,

I ran across this site in search of Radioactive Iodine information. Brief story - female 41, I noticed a small tiny bump on my neck with my head tilted back while washing last September 2018. The bump grew signiificantly during 2 months from finding it to surgery. Ultrasound showed a large nodule on the Isthmus. I elected to forgo a needle biposy. By the time my surgery occurred in late November the bump was now to the point of interferring with swallowing and very visible externally. My doctor was fully expecting a cyst given how quickly it grew. During surgery the preliminary report findings stated there was a more than 80% chance the tissue removed was cancer along with the small nodules that were on each lobe. The whole thyroid was removed. Pathology came back as papillary thyroid cancer in every nodule along with a lymph node that was stuck to the thyroid as well that was cancer positive upon testing.

My thyroglobulin was at 0.2 at my last bloodwork check late January. I have been told that due to the lymph nodes already being involved RAI is still recommended. I have many mixed feelings about RAI.

What are long term consequences, ramifications, side effects? I.E. how likely is it to end up with another cancer from having taken RAI years down the road?

As my family put it, "if we cannot be around you or share anything with you, what is the RAI going to do to you?"

I have been to 2 doctors in regards to treatment (plus my ENT who removed the thyroid). 1 endocrinologist significantly downplayed all the negatives & risks of RAI even stating I only needed to avoid my family for "just a few days" while the other stated facts expressing a great need to do RAI quickly with the standard "quarantine" guidelines.

I currently have the Thyrogen shots scheduled starting the 18th with RAI on the 20th. Trying to schedule the PET scan currently. I started the LID diet yesterday. I generally live on dairy, carbs and have chocolate daily with an occasional salad. This whole LID of 4 servings of grains and only 6 ounces of meat with veggies, fruit and unsalted nuts might be worse than the cancer...I am kidding but I am on day 2 of LID and struggling.

Any wisdom, thoughts, advice, input, is appreciated.

Thanks, Rachael

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