Should I have RAI

[Karen8888]

I had a total thyroidectomy on July 23 with 3 parathyroid and lymph nodes removed. I am scheduled to have the radiation pill, but I have had several problems: My throat still feels like there is a lump there, my arthritis has kicked up bigtime,I still am constipated and extremely tired. I am bipolar and my psychiatrist has lowered my lithium from 3 to 2 times a day. I am extremely depressed. I just put my mother in a nursing home and I have to be out of her house(I took care of her for 10 Yrs. with alzheimers)by October 1. Since there was no lymph node involvement-do I have to have "the pill"? And do you think my circumstances should change the timing of it? Also-I am disabled and have no one to help or take care of me.  Thank you. Needless to say, I am stressed up to my eyeballs.

[Karen8888]

That is great news-I believe I will follow in your footsteps. I, loke you, just can't deal with this now and the side effects worry me too.  Thank you so much.

[TriciaS]

I should also mention that I have had an ultrasound of my thyroid bed and a baseline TG level to monitor to see whether the cancer has come back.  Also, I had papillary cancer, the least dangerous and most common of the types of cancer you can get in your thyroid.

[TriciaS]

Hi Karen,

I had my thyroid out in May.  I went to see an endocrinologist at Mass General recently, and together we decided to NOT have RAI.  The recurrence is about 3% for most folks, but since my cancer was multifocal, the recurrence rate goes up to 5% according to this doctor.  Also, he told me that there have been no good studies to prove that RAI prevents recurrence.  There was no cancer in the lymph nodes that were removed, so I'm going with taking the 5% chance that the cancer will recur.  If it does come back, he told me surgery is the only option, and that they would remove the lymph nodes (this is where the cancer would likely return).

The RAI would have been very difficult for me to do - I have two small children.  I wouldn't want to expose them, and I live in a small house, so I would have to move out for a period of time.  I don't really have a place to go, so I'm not sure what I would have done.  RAI can harm your salivary glands and teeth from what I've read, and it seemed to me that the side effects and inconvenience outweigh the benefits to getting RAI.

This is my experience and opinion.

Tricia

[Karen8888]

Thanks, Guys. I had 4 small areas of cancer-the nodules were clear. I am on 150Lev.
It's so hard to get help from the doctors.  They never told me what my levels were.  I called 2 days ago and still haven't heard.

[ChitChatNine]

Same ? .. what is your TSH .. did they draw it?

Was anything cancer?  The parathyroid cancerous?  Any other nodules cancer?  

It is hard enough to cope with what is on your plate right now, coupled with RAI and hypo and bipolar.

We are here for you ... post anytime,

WELCOME!

C~

[nissah46]

I guess it depends on the size of the nodules. Are you on thyroid meds yet? I did not get RAI until 5 months after TT, and I had metas. to the lymph nodes, lung and rib.  You may be able to contact a social worker at the hospital to discuss having help through this, especially if you are hypo, and not able to prepare LID food. I don't think putting it off for a couple of more months would hurt, but that is if you are taking thyroid meds already. Some doctors don't prescribe meds after TT and take you directly to RAI.  My surgeon did not do it that way.  Good luck.
Trish