Making a decision about RAI ...

Hi everyone,

I was diagnosed with papillary carcinoma back in October. On 11/19 I had a complete thyroidectomy. I had 2 cancerous nodules on the right lobe - both <1cm. After the pathology was done, they didn't see anything else and the 12 lymph nodes they took out were all benign.

At that post-op appt, my surgeon felt like I could be monitored and come back in March for more scans. He didn't feel I needed RAI treatment at that point. But in meeting with my endocrinologist a few times, she is recommending it. She spoke with my surgeon and they both agree I am in a "light grey area" as to whether I should have the RAI. Even though the cancer was so small, because it was multi focal, she thinks I should have RAI. I am meeting with her next week to discuss further and I will call my surgeon beforehand to discuss with him again.

Here's where my question comes in ... I'm not sure what I should do or how I should make this decision. Is there anything I should be looking at specifically in my bloodwork yet that might help? I know my TSH is extremely low. I'm going to request a copy of my most recent workup on Monday. Has anyone else had to weigh this decision? What factors influenced what you ended up doing? I felt comfortable with my surgeon's opinion but my endo thinks the multi focality of my cancer means RAI would be the better course. Thanks in advance for any and all input!

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Your story sounds like mine. two papillary microcarcinomas (.6cm and .15cm). The multifocality makes for the "gray area" - my surgeon and endo said we could go either way. I chose not to have RAI. Time will tell if it was the right decision.

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I would look at your Tg level... your "cancer indicator". Of course, this number should ideally be zero. If you're already at zero, or very close, the need for RAI may be less. If you're higher on that scale, that would be an indication that the cancer may have been more significant or spread more, and RAI may be in your best interest. Aside from the diet and the quaratine period, the RAI wasn't that bad for me. I felt a little poorly and of course got terribly bored being isolated and alone for a few days, but overall it was well worth it to be reassured that there was a greater chance I wouldn't have to continue dealing with the Big C. Everyone is different though, and of course you have your own personal preferences and life factors that may weigh-in on your decision. Just keeping talking with you Doctors and make the decision that is best for you. Good luck to you :)

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I really appreciated your responses and I will look at my Tg levels on Monday. My endo is going to go over the numbers with me Friday but I know she thinks RAI. Its tough because I went to a really great surgeon in NYC and he said no RAI. I think my endo is being more cautiously aggressive while my surgeon feels effective monitoring will work for me. So do I go with the cautious, aggressive approach or do I closely monitor it all? Ugh. Thanks for listening to this debate I'm having with myself. :)

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Mine was also multi-focal papillary microcarcinoma, but mine was follicular variant (FVPTC). The 3 nodes taken were clear. The endo at that time said, "No RAI." 5 months later, the new endo found 2 foci in the thyroid bed that were positive on WBS and ultra-sound. So, I had RAI at the six-month point. Interestingly, a hospital U/S at 4 months found nothing. At 5 months the WBS lit up, and the in-office ultrasound confirmed. I still wonder, why was that hospital's 4 month U/S clear?

I have Hashimoto's, which was still raging at the time because there was residual tissue from the TT, so we could not rely on Tg for me.

Tg is of value when viewed over time - from this point going forward. Does it increase or does it remain stable? If it increases, you have an indication for having a WBS and U/S.

The question could be, "Were there nodes that were missed?" In my case, I feel there were.

It's a tough call, and it's difficult to get conflicting information. The thing is, if you are well monitored as I was, you have a good chance of detecting it early and in time to have RAI, like I did. I am 2 years post-RAI and I have no evidence of disease.

Good luck and let us know what you decide and how you are doing.

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Good luck with your decision. Just ask them as many times as you need, if they would or wouldn't have it done themselves and what their reasons are. Then try to find statistical data to confirm the rationale and what you believe is best for you given the presenting clinical circumstances.

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Ugh! I have been going through the exact same thing. I had a tt 11/14/12. There were two malignant nodes, 2.1 cm and the other around 1cm. I also had two large non malignant nodes. I am under 40 and there doesn't appear to have been lymph involvement. I have been on the lid and am scheduled for thyrogen Mon and Tue and ablation on Wed. I'm not 100% sure I will go through with it. I feel that I am in the grey area but my nuclear med doctor is planning on giving me 75 mCu, which I'm not thrilled with. I've been reading a lot about second primary malignancies as a result of rai. The old thinking was that 600 mCu of cumulative radiation was the threshold but it's now believed to be much lower. I struggle with tackling a known versus what could be a very unpleasant side effect of treatment. My nuclear med doctor's goal is to wipe out the thyroid cancer. I'm not saying that he isn't concerned about another primary malignancy, but that's not his objective right now.

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If you trust your doctors then I would go along with the treatment.

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You need to be as sure as you can be before going ahead with the RAI. You will be ingesting a poison that may actually increase the chances that you will get other cancers in the future. Check the ATA guidelines to see what they recommend. Also, I would get a second opinion, not from a surgeon, but from an endocrinologist who deals with thyroid cancer exclusively (preferably at a major cancer center). Many endos have a knee jerk reaction to giving RAI; it has been the treatment of choice for so long that they don't even really give it a second thought. However, that is changing and if you are considered low risk, the trend is now to forego RAI because studies have shown that there is no better prognosis for those who get it versus those who do not. It is a difficult decision for all of us, but it is especially hard when you have differing opinions from your medical team. I was in your situation back in October. My docs all said RAI, but an endo at Sloan Kettering said no RAI necessary at this time. Turns out, the endo at Sloan Kettering was wrong because a WBS showed that I had a met at the sternal notch. Therefore, I did have to have the RAI. Had 100 mCi of RAI on 12/03/12 and doing just fine, but I worry every single day about what the poison has done/is doing to my body.

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You do not say your age. I had a 1 cm. papillary tumor but because of my age (I am 60 yrs) they felt that 150 mci would be a good way to prevent recurrence. They said if I was in my 20s or 30s, the cancer is less likely to reoccur and I wouldn't need the RAI. Hope this helps. (ps. I had no significant problem with the RAI treatment so you do not necessarily have to have problems or bad reactions although some people do)

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Part of the is sure is not whether they got the nodules or not but the residual cancer cells left from surgery. Your tg number is one indication. It is impossible to remove all thyroid cells during surgery and any left over cells are breeding ground for your cancer to grow back. That is one of the reasons they do the ablation. I had my RAI on Thursday and my tg level was only 1. Very few cells left but they did not want to leave them for the above reason. I ended up with a little higher dose of RAI due to lymph node involvement. My surgeon told me before surgery, however, that because my nodule was 1.5 cm, I probably should have RAI. This was even before she knew I had lymph node involvement.

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I asked 2 Endos and my surgeon if RAI was necessary in my case, indicating that I was worried about the increased risk of secondary cancers due to RAI. All 3 docs indicated that the risk of developing a recurrence of thyroid cancer was greater than the risk of getting a secondary cancer from the RAI. My surgeon doesn't recommend RAI to everyone. He said since my cancer was not contained and since I was BRAF positive he definitely unequivocally recommended it. I trust his expertise and character.

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My story is diagnosed with a 1 cm tumor at age 47. TT done and path report showed PTC with minimal local invasion and all lymph nodes clean. My Tg at rest and stimulated both were undetectable. The feeling was low dose or no RAI.

Just to be sure my endo ordered a WBS with a tracer dose of I 123. The scan showed a mediastinal lymph node (in my chest) that took up iodine very well. He went with 125 miC I131 and the follow up WBS showed a second suspicious node in my chest.

If you are in that grey area, a WBS can be your deciding factor.

My doctor set up my protocol with thyrogen injections and WBS so that I was able to get dosed with I 131 the same day my scan was done and read.

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