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Old 03-20-2006, 01:13 PM   #1
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Papillary Carcinoma...post Thyroidectomy...what should I expect now?

Hi All,

This is my first visit to this messageboard, and lemme tell ya, I'm impressed that there is such an extensive community and willingness to share all the information amongst one another!!! I hope that any of you who have gone/are going through Papillary Carcinoma will be able to shed some light on some questions I have...

I just had a complete thyroidectomy on 3/6. The Surgeon indicated that my pathology report came back good, meaning that the cancer was isolated to my thyroid and my lymph nodes weren't effected. - from your experiences, what does this mean? is the cancer "gone" or could it be somewhere else?

He indicated the size of the nodule and I believe he said 0.21" and he said it wasn't abnormal that I didn't feel a thing (my OB found it a few years ago, I had no idea it was there) - is this normal?

I'm meeting with my Endocrinologist again on Wed 3/22. I'm not sure what to expect. I'm assuming we'll be discussing the possibility of RAI treatment. - do I need this if the cancer is isolated?

I haven't been on any meds since my surgery, meaning, no thyroid supplement. I'm beginning to be irritable and get aggitated very easily - is this normal?

Ok, I've asked a million questions...if anyone can shed some light on this it would be wonderful. Thanks so much, and I look forward to reading your responses.

~RomyD

 
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Old 03-20-2006, 07:06 PM   #2
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Re: Papillary Carcinoma...post Thyroidectomy...what should I expect now?

Hello RomyD,

Sorry about your diagnosis. The good news is that pappillary thyroid cancer is curable. I had it last year.

Do you know how big your nodule was in cm? I know that for over a certain size most doctors recommend RAI. If you do have RAI, they destroy all thyroid tissue, and this way, they can monitor your blood for a recurrence---if any thyroglobulin circulates in your blood, they consider it a recurrence, since you should have no thyroid tissue. They can also use iodine body scans to search out recurrences and spreads, if you have ablated all thyroid tissue. My surgeon recommended it for any size.

Alot of pp. find a nodule almost by mistake---they suddenly notice a lump on the neck. It's good you found yours early.

I wasn't on meds either until after RAI. I got the typical "hypo" symptoms you see posted about on this board. But once you get your medication regulated, they start to go away. So being irritable sounds normal to me.

You will do great---no matter what your next step is. It seems like you have an excellent attitude, and that will give you strength........

Best of luck to you.

 
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Old 03-20-2006, 07:19 PM   #3
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emmymm HB User
Re: Papillary Carcinoma...post Thyroidectomy...what should I expect now?

Romy,
Sorry for your diagnosis. The good news is that pap cancer is the most treatable of human cancers. I just had a TT one month ago. It was a 1cm papillary cancer tumor. I will have RAI next week. If you aren't on synthroid yet, the doc must be planning RAI otherwise you'd be on replacement hormone by now. I don't have an endo, so I can't shed light there. My specialists so far are the ENT surgeon and the nuclear medicine doc. Apparently the nuclear med doc will monitor my hormone levels / scans over the next year. Beyond that, I don't know who will monitor me...probably my primary care doc. There is a lot of good info on some "Thyroid cancer survivors" type web sites. Search google. ( you probably already have!) (not allowed to post websites here) I found lots of good info...of course it is how I found this board!
Good luck,
Emmy

 
Old 03-20-2006, 09:28 PM   #4
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Re: Papillary Carcinoma...post Thyroidectomy...what should I expect now?

I'm sorry to hear you're going through this, but you sound like you're handling it very well. I was dx'd with follicular thyroid cancer in 03. I've had 2 surgeries and also 2 RAI treatments to destroy residual thyroid tissue. Your nodule was very tiny, but like someone else said...I think most Dr.'s like to do a follow up RAI treatment to destroy all of the residual thyroid tissue they couldn't get during surgery. Most Dr.'s like every bit of thyroid tissue to be gone in patients who have had thyroid cancer. The actual malignant cells are almost definitely gone, but there is probably still a tiny bit of residual "normal" thyroid tissue left. The RAI will "kill" any remaining tissue...which helps prevent recurrence.

I know those "hypo" symptoms are hard to deal with. Try to hang in there. Things will get back to normal again...I promise!

If your Endo does suggest RAI...make sure to ask him about the Low Iodine Diet. I think most Dr.'s have their patients follow this for a couple weeks before treatment, but mine didn't even mention it to me. I believe this is the reason I ended up needing 2 treatments. There's a lot of info on this diet at thy ca.org...there's even a recipe book you can print out. This diet helps deplete the body of iodine before treatment...which helps any remaining thyroid tissue soak up the RAI. The treatment itself isn't bad at all. The only side effects I had were mild nausea and swollen salivary glands.

Best of luck to you!! Let me know if you end up needing the treatment...I have a few tips that I learned to really helped ease my symptoms the 2nd time.

Take care!
Hilery

Last edited by hilery79; 03-20-2006 at 09:31 PM.

 
Old 03-22-2006, 12:09 PM   #5
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Re: Papillary Carcinoma...post Thyroidectomy...what should I expect now?

Hello everyone!

Thanks so much for your responses...I really love this board. You guys are really helping to educate me with the appropriate "artilery" to meet with my doctors!

I had my first appointment with my regular endocrin, post surgery, today...found out that my mass was 2.1cm, so she's recommending the RAI. I'm to meet with the Radiation Oncology dr next week Tuesday for consultation. In the meantime, she's prescribed Cytomel tablet 25 mcg, 2x a day. This will be taken until the radiologist tells me to stop before the RAI. She also told me that I'd be living "hypo" for about 2 weeks before the procedure...as well as living the low-iodine diet for the same amount of time. I'm about to do my research on low-iodine eating now...gotta love the net!!

My endocrin indicated that she thinks the dosage will be about 100 for the ablation, but the radiologist will tell me for sure. I asked the question of increased breast cancer risk and she said she's heard no such thing, but that leukemia can be a side effect for high dosage (500+). Any one have any light on other side effects other than possible nausea and salivary gland swell?

Again, thanks sooo much for your responses, and I hope to get to know all of you guys!!

~Romy

 
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