# RAI or no RAI



## Laura

Hello, I'm 1 week post thyroidectomy for a 1.4 cm papillary carcinoma nodule. I'm hearing from everyone that RAI is the next step in my treatment but I'm not sure I want to do this. Has anyone opted not to have RAI after surgery? My tumor was non-invasive, I am a 51 year old female.


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## Andros

Laura said:


> Hello, I'm 1 week post thyroidectomy for a 1.4 cm papillary carcinoma nodule. I'm hearing from everyone that RAI is the next step in my treatment but I'm not sure I want to do this. Has anyone opted not to have RAI after surgery? My tumor was non-invasive, I am a 51 year old female.


Hi! I am sure those that have had to make this decision will be along w/some input!

Hate to hear what you have been through but thank goodness they found out what was wrong and could do something about it.

The thing about thyroid tissue is if even a tiny bit is left behind, it can and will grow back. Therefore, you could be at risk. I would give this some very serious thought and of course talk it over in-depth with your surgeon or other doc who is handling your care.


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## Octavia

My oncologist told me that thyroid cancer is not one of those cancers that they can declare you "free" from after x number of years with no recurrence. It can come back 10, 20, 40 years down the road. RAI is your first line of defense against recurrence, and like Andros said, that tissue will grow if it's not killed off.

I did not get the impression that RAI was optional for me...it was a given, part of the standard course of treatment for papillary carcinoma. If it was optional, I still would have done it. My cancer had not spread...at least not visibly...but there were still "leftover" thyroid cells in my neck because it's not a perfectly clean surgery. Even just a few rogue cells that are left can turn into another tumor. (This was all earlier this year, so I don't have any long-term info to share.)

Because thyroid cancer is so curable, I wasn't feeling too threatened by my diagnosis. I told both my ENT (surgeon) and my oncologist that I was looking at this more as "cancer with a little c," looking for agreement from them that I didn't need to take it too seriously. Neither of the doctors would agree with my nonchalant attitude about it, which really surprised me. The surgeon said that cancer is cancer because it's aggressive, and it can always come back, and we need to take it seriously and treat it as such.


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## Laura

Octavia thanks so much for your input. Yes I also am not feeling so threatened by my diagnosis because the tumor was so small and was completely removed ... the reason why I'm debating the RAI. Well everything you say makes sense so I do think I'll proceed. Also I called into a radio health show in NYC to speak about this with a well respected alternative med physician who thought the benefit outweighs the risks and recommended a couple supplements to take during the RAI those being N acetyl cystein and melatonin.


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## joplin1975

Octavia said:


> My oncologist told me that thyroid cancer is not one of those cancers that they can declare you "free" from after x number of years with no recurrence. It can come back 10, 20, 40 years down the road. RAI is your first line of defense against recurrence, and like Andros said, that tissue will grow if it's not killed off.
> 
> I did not get the impression that RAI was optional for me...it was a given, part of the standard course of treatment for papillary carcinoma. If it was optional, I still would have done it. My cancer had not spread...at least not visibly...but there were still "leftover" thyroid cells in my neck because it's not a perfectly clean surgery. Even just a few rogue cells that are left can turn into another tumor. (This was all earlier this year, so I don't have any long-term info to share.)


This, 100%. I'm going in for surgery in about 10 days and, honestly, I would have considered a different provider if he didn't insist on RAI post-surgery, because of everything listed above.


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## Andros

joplin1975 said:


> This, 100%. I'm going in for surgery in about 10 days and, honestly, I would have considered a different provider if he didn't insist on RAI post-surgery, because of everything listed above.


You are going on the 29th.??


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## joplin1975

Andros said:


> You are going on the 29th.??


Yup. Getting more and more nervous everyday, but its gotta get done, so the sooner the better.


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## Andros

joplin1975 said:


> Yup. Getting more and more nervous everyday, but its gotta get done, so the sooner the better.


You will just be so glad to have this behind you. If you are like me, it nags you every day and I would just as soon "do it to it" and move on.

You are in my thoughts and prayers.


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## webster2

joplin1975 said:


> Yup. Getting more and more nervous everyday, but its gotta get done, so the sooner the better.


Best wishes. Nerves are normal, focus on getting your recuperating comfies together...it'll help. We'll be thinking of you!


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## pj880

Here's a different viewpoint. I had a total thyroidectomy in November for a 1 cm papillary cancer on one side of my thyroid and a microscope spot on the other side. I did not have lymph node involvement.

My endocrinologist told me that my odds for recurrence are very low and that a new study had shown no difference in recurrence rates for people with a tumor this size who had RAI or did not have RAI.

She told me that in the unlikely event the cancer did return I could have RAI then. She also said it can affect you in other ways a few months afterwards. Given these factors I did not choose to have RAI.


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## Laura

Thank you for your input. I was hoping to hear from someone that opted not to have the RAI. I'm still deciding.


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## webster2

I am not having RAI, at this time. I had 3cm and 4mm papillary nodules removed in July. I am going to have a full body scan again in the late fall.


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## Weeble

I had two very small papillary cancer nodules - 6mm & 2mm.
Surgery removed thyroid and left lymph nodes. Pathology confirmed the size and type of disease in thyroid and showed no spread to lymph nodes.

My surgeon and my endo both said the latest guidelines indicate RAI is not necessarily the automatic response for nodules less than 1cm.....and both of mine combined are still <1cm, so I am not doing the RAI but will have a watchful eye on the thyroglobulin labs.

I'm ok with this approach.


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## Octavia

I did not indicate size in my earlier post... my nodule/tumor was 3.2 cm. Age 41. I did get RAI (it did not appear to be "optional" for me).


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## sunshinie

I was told by the first ENT I saw that 6 weeks after surgery I would get RAI, it was standard and there wasn't an option.

I got a second & third opinion. The second said it was up to me - if I felt more comfortable getting it, I could. It was up do me. He said the newest standards changed and it isn't just an automatic anymore. The third said no RAI, based on the current guidelines. He went on to say studies show little difference in long-term outcomes and that sometimes the benefits don't outweigh the risks - there's a higher chance of secondary cancers later in life. The Endo he works with told me I could get RAI anytime after surgery - so if something is off at my next check, they can opt to do it then.

Knowing I'm not pressured to get it "now or never", I opted to not get it. That was a total turn-around for me - in the beginning I thought I wouldn't feel confident the cancer was gone unless I got it.


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## Catnap

Did you decide whether to have RAI? Did any health professional provide you with good info to help in your decision? 
My tumor was 1.1cm. Not met with my endo yet but get the impression from my surgeon that RAI for me might be a choice. I think I'd feel comfortable being monitored for recurrence rather than jump straight into RAi but I'd like to understand the risks/benefits a bit better.


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## I DClaire

Catnap said:


> I think I'd feel comfortable being monitored for recurrence rather than jump straight into RAi but I'd like to understand the risks/benefits a bit better.


I have a question concerning the risks. I understand the radioactive iodine exits a patient's body through saliva, sweat and urine.

What, if any, effect is this going to have on a person's teeth? Trapped in constant contact with saliva for days, is there a danger?

I have to wonder in cases where the necessity for RAI seems to be borderline is there more danger to the patient (or their family members) from radioactive iodine exposure than possible benefit?

I can't help thinking the radioactive drugs I was given over the past 2 1/2 years for multiple nuclear scans may have caused my thyroid problems to escalate bigtime. Two and a half years ago I had such low numbers my doctor didn't do anything to treat me. A month ago I had a thyroid removed that was woefully diseased with multiple cysts and nodules. All I hear is how slow-moving thyroid disease is so I wonder if multiple doses of radioactive drugs for five nuclear scans and one nuclear stress test could have triggered things escalating so quickly?

I wonder if there are any statistics as to the relationship between RAI and other cancers developing later? One way or another - do people who have had RAI tend to have more cancer diagnosis in the future _or significantly less? _


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## joplin1975

I was curious too before my RAI and found this article to be helpful and easy yo understand: http://www.hkcr.org/publ/Journal/vol8no3/full/127-135 Side.pdf


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## I DClaire

Catnap said:


> Did you decide whether to have RAI? Did any health professional provide you with good info to help in your decision?
> My tumor was 1.1cm. Not met with my endo yet but get the impression from my surgeon that RAI for me might be a choice. I think I'd feel comfortable being monitored for recurrence rather than jump straight into RAi but I'd like to understand the risks/benefits a bit better.


I'm having my first real lab tests on Thursday of this week, including Thyroglobulin Panel Tumor Mrk., T4 Free, T3 Free, TSH and yet another Renal Function Panel. I'll see my endocrinologist for the first time since surgery on 11/17.

I am beside myself wondering what my numbers will be? I actually found a ruler and measured in cm. the size of a pencil eraser, (how my surgeon described my cancer) and I'm still hanging onto hope I won't have to do any further treatment immediately.

One thing that is bothering me is I'm back having the tingling in my lips...something I thought I'd gotten past a couple of weeks ago. I got to the point where I couldn't stand the smell of Tums and started taking Viactive Calcium but I'm wondering whether it's not working or something else is happening.

I know we're not supposed to wish our lives away but I would happily jump forward to November 17 for more information and a better idea of how to plan the month of December.


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## Catnap

I still get mild tingling occasionally on my lips but my calcium is normal. I'm seeing endo tomorrow have no idea what she is going to say. I'll mention the tingling. I also have sore and swollen lymph nodes in armpits and groin. We think I've had virus hope that's it and not to do with removal of ones in my neck! I was so relieved I just had papillary and not medullary I felt happy and lucky now I'm feeling rather fed up and sorry for myself :-(


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## shellebean

Weeble, did they determin that your 6mm and 2mm nodules were cancerous after having your surgery? What did they base having the surgery on?


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