to have or not to have RAI Treatment- I need advice :)

to have or not to have RAI Treatment- I need advice :)

Postby j9gl » Wed Aug 12, 2009 8:23 pm

Hi there. I am a 41 year old female that was initally diagnosed with papillary carcinoma 13 years ago for which I had a left lobectomy. After all of the tests done the dr's did not think (even with the suspicious cells from the needle aspiration) it was cancer and still into the surgery the pathologists findings came back inconclusive. It wasn't for a few days did my dr call to tell me it came back papillary carcinoma and recommended total thyroidectomy. I did not want to go through that again at that point so I received a 2nd opinion from MSK and they told me that they didn't feel it necessary.That the cancer nodule at the time of surgery was so small and that there was no evidence of spreading from the removal of 13 lymphnodes. So this past year I realized I was getting a little to relaxed with my cancer remission all these and felt that I should have an US and when we did do one my new endo saw a small nodule (very small) on my right side. After retrieving my surgery papers from my files he saw that this nodule was present when I had my surgery 13 years ago and it had not really grown all that much in that time. He didn't seem too alarmed and told me that it was probably a biologically non agressive tumor - meaning it has stayed put all these years and might not ever spread or it might. He asked me the type of person I am - could I sit with that and just be monitored more or do I want to schedule a needle aspiration and then we will have to move from there to surgery if it is cancer. I said to him I am the mom of 3 boys 6, 3 & 1 yr old and I already before this conversation with him worry for my well being to care for my children in a healthy state that I def should get the na done. So needless to say it was papillary carcinoma again and we moved forward with total removal on St Pat's Day at MSK. The surgeon there at the follow up told me it was considered micropapillary carcinoma because it was so small.

So my question for all of you is this - that surgeon that day told me in his opinion that he would not go through with the RAI treatment from what he saw. He said that we just keep doing US once a year to look for new growth. That sounded good to me but, when I went recently to see my endo here in NJ he said that we should do it. Since I am 41 and have many years left to live it made sense. I'm a bit confused on what to do. He also told me that there are findings of possible bladder cancer in connection with the RAI and that he had to tell me that ?? Anyhow..from what I am reading it seems like even if I have the RAI treatment there is still recurrences happening to people. So even with that treatment there is no guarantee. On one hand the surgeon shrugged the RAI off as no biggie and not needed and then my endo is saying we should move forward with it. They are very confusing. Just the worry of what the RAI can cause, having to go off my meds with 3 small children and then no guarantee of recurrence I'm not sure what to do. Anyone with any advice or a clearer explanation of the benefits I would appreciate it so much! thks...
j9gl
 
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Re: to have or not to have RAI Treatment- I need advice :)

Postby Ruthie » Mon Oct 05, 2009 1:56 am

I too am confused and concerned about the RAI treatment. I had my total thyroid removed in March 09 stage 1 1 centimeter Papillary tumour on the left side and two tiny tiny nodules starting on the right side.

My Drs said it was my decision but they saw no danger in the RAI treatment and because of the two tiny ones that I should probably have it. I have read that 1 centimeter or less may not require radiation. I really don't want this treatment if I don't have to have it. Some times the cure is worse than the disease. Any thoughts or info out there?[/color]
Ruthie
 
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Re: to have or not to have RAI Treatment- I need advice :)

Postby Pleidies » Sun Oct 25, 2009 9:51 pm

Ruthie wrote:My Drs said it was my decision but they saw no danger in the RAI treatment and because of the two tiny ones that I should probably have it. I have read that 1 centimeter or less may not require radiation. I really don't want this treatment if I don't have to have it. Some times the cure is worse than the disease. Any thoughts or info out there?


Yeah, I'm dealing with that decision right now. Actually, more to the point, I decided to go thru with it. My cancer was 2cm, which is still rather small, and my doctor more or less left it up to me. He made the choice harder by saying that if I didn't have the RAI I might still be fine, but I'm glad he isn't pushing me into anything. He does recommend doing it, as "insurance against the future." (He loves that phrase.) If you ablate all thyroid tissue, it's like starting from a zero point: if future blood tests show any occurrence of thyroid cells, it can then be safely assumed it's cancer. If you don't have the treatment, they don't know if it's normal tissue regrowth, or cancer, and so you're in for more tough choices at that point. I feel like getting it over with now, even if my risk for reoccurrence isn't high.

My doctor is recommending the lowest dose of radiation (30 "units"?) due to the small size of the cancer - you could consider requesting the same.
Pleidies
 
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