Dec 05, 2010 - 7:01 pm
Hello everyone. I want to share my story and ask a few questions about my next steps. First of all I was diagnosed with Papillary Carcinoma of the Thyroid on November 10, 2010. The nodule was found on August 2, 2010 by a very thorough ER doctor who would not stop until he found the reason for my symptoms. The nodule was so close to my wind pipe that I was having difficulty breathing. My ENT removed my entire thyroid on November 18, 2010. The pathology reports showed that the cancer had not spread to the lymph nodes and that it was totally encapsulated in the nodule itself. He then referred me to a radiologist/oncologist and this is where the fun begins.
The rad/onc doctor told me that the next step is RAI 131 treatment, which I already knew because I have done a ton of research on it. He said the reason he feels it's necessary is because of the size of the nodule, which was 2 cm, and because the cancer had escaped the borders of the nodule and invaded the thyroid tissue...wait...what? My ENT said the pathology reports showed the cancer was encapsulated in the tumor? I was stunned...I was speechless.
The rad/onc dr. went on to tell me to stop taking my thyroid meds for 3 weeks and come back for blood work so we can start the I-131 treatment. My question here is why do we have to stop taking meds for RAI treatment? What is the benefit? Also, isn't 3 weeks a long time to be off meds? My father had this same type of cancer and when he went off his meds for 2 weeks, he almost went into a coma. Is this something I should be worried about?
Also, I decided not to stop taking my meds right now. I am putting off RAI until after Christmas because I do not want to be separated from my family during the holidays. I have 4 children who have been through enough right now. It can wait a few more weeks. Plus I want to know more about it before I take the plunge!
Thank you all for reading this. This has been a whirlwind for me and it doesn't seem like it's going to stop anytime soon. I want to take control of this situation instead of letting it control me. Any ideas on how I can do that?