# Please help!



## toofdoc (Jun 29, 2011)

Hello all. This is my first post and i appreciate in advance any help i can get. Here is my story, ill try not to make it long and boring, so here it is in bullet form...

-30 yo male otherwise healthy
-diagnosed with papillary 4 months ago
-3.5 cm (not mm) Tumor in left lobe
-total thyroidectomy on 4/28/11 no complications 
-RAI ablation 100 mCi on 6/8/11
-Thyroid scan on 6/15/11
-Results of scan showed metastasis in cervical and supraclavicular nodes

My endo wants to wait about 3 months for a CAT scan and then in 6 months a follow up thyroid scan. Does this sound right. Its killing me knowing that i have metastasis and just waiting. I know the first round of ablation needs time to work ,but does this time frame seem right? The doctor mentioned that depending on the scan in 6 months i may need more surgery (radical dissection) or more RAI, or both.

Thanks again for any help.

J


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## Andros (Aug 26, 2009)

toofdoc said:


> Hello all. This is my first post and i appreciate in advance any help i can get. Here is my story, ill try not to make it long and boring, so here it is in bullet form...
> 
> -30 yo male otherwise healthy
> -diagnosed with papillary 4 months ago
> ...


I am sorry for the reason you are here but very glad you have found us.

You probably already know that none of us are medical doctors here. We can only give opinions, albeit a lot of that is based on experience. Which helps....................some!

From everything I have read, this seems like a reasonable approach but that would be subject to change depending on the CAT scan in 3 months should they see anything untoward which I sincerely hope they do not.

It just has to be a step by step program and I know you are suffering from a lot of angst right now about all of this. I know I would be and I am sure the others here will agree.

We have had a few with papillary cancer so I hope they come along and offer solace as well as experiences.

On a personal level, I would be curious to know what brought you to the doctor in the first place and how the cancer was firstly suspected or confirmed.

How are you feeling right now? And I presume you are on thyroxine replacement and the TSH is being kept suppressed which is the accepted and strongly advised protocul?


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## toofdoc (Jun 29, 2011)

Thanks for the reply. I appreciate your insight. Here is how it came about...

-never been symptomatic
-family history of hashimoto's (Mother)
-Family history of cancer, mother, hodgkin's
-saw ENT regarding lymph node in cervical area that visibly inflamed and easily palpable (always worried about nodes due to mom's history)
-ENT found that node was soft and movable, most likely non-cancerous (ended up with terrible flu 2 days later)
-Astute ENT also palpated thyroid although not my chief complaint, very thankful for this
-1 week later had ultrasound
-2 weeks later had FNA which showed papillary
-3 weeks later total thyroidectomy. Final path report showed left node 3.5 cm tumor, right node evidence of hashimoto's.

Right now i feel terrible. On synthroid 137 for past 6 weeks. Just had blood work, TSH is 15. Definitely feeling effects of hypo, extreme irritability, hot and cold flashes, head aches 24 hours a day, can't get out of bed in morning. My doc just switched me to synthroid 150. Now i'm just playing the waiting game. Waiting to feel better and waiting to know if and when i need more treatment. Thanks for listening...

J


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## katbid23 (Oct 20, 2010)

Hi there and welcome. This can all be so overwhelming and stressfull. I also have papillary and papillary varient. I had RAI (150 mCi) in Feb of 2011. I go back for another scan in Aug. My oncologist told me that is normal procedures because the RAI can actually continue working anywhere between 6 and 12 months. Hopefully the RAI will kill off any remnants of the cancer. Unfortunatly, the treatment for this is very slow and nerve wrecking. I try to forget everything about it during my 10 weeks between labs. I know that is hard if your feeling bad. It does appear that your synthroid dosage was really too low. I am on 150 and my TSH is .01. Have you had your TG level checked? I wish you the best. Stay strong and keep the faith.


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## toofdoc (Jun 29, 2011)

Thank you very much for the reply. It nice to know that my condition is being handled properly, although yes it is quite nerve wrecking due to the prolonged course of treatment. Knowing that my cancer is not contained and that i have metastasis weighs on me heavily. I guess i just have to put it in the back of my mind for now because there is nothing i can do. This will be much easier to do once my TSH is controlled and i start feeling better. As for my TG, i'll be back with that tomorrow. My doc did not tell me my TG, only my TSH. Thanks for all the help again.

J


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## BettyV4 (Nov 30, 2010)

Hi Thyroid Family,

I'm the mom of a 24 yr old daughter who had pappilary thyroid cancer - diagnosed back in September, 2010. TT in Dec. and RAI in end of Feb. beginning of March. It was a tiny nodule - spread to one lymph node. Considered stage one due to age and size of nodule. Kristina had her bloods done around a month and a half ago and all was normal. My understanding is that if the protein which I believe is the thyroglobin is normal; which it was - all of her bloods came back normal, she is to come back in 2 and a half months for further follow up bloods. When I spoke to her endo this morning she said if the protein comes back normal they don't do another scan unless there are abnormalities in the bloodwork. So she is being watched carefully. By the way my daughter is doing really well after the ordeal she has encountered; we all encountered. Hi Andros:hugs:


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## Andros (Aug 26, 2009)

BettyV4 said:


> Hi Thyroid Family,
> 
> I'm the mom of a 24 yr old daughter who had pappilary thyroid cancer - diagnosed back in September, 2010. TT in Dec. and RAI in end of Feb. beginning of March. It was a tiny nodule - spread to one lymph node. Considered stage one due to age and size of nodule. Kristina had her bloods done around a month and a half ago and all was normal. My understanding is that if the protein which I believe is the thyroglobin is normal; which it was - all of her bloods came back normal, she is to come back in 2 and a half months for further follow up bloods. When I spoke to her endo this morning she said if the protein comes back normal they don't do another scan unless there are abnormalities in the bloodwork. So she is being watched carefully. By the way my daughter is doing really well after the ordeal she has encountered; we all encountered. Hi Andros:hugs:


It is so good to hear from you and I am glad to hear Kristina is doing so well. Much to be grateful for.

This is my info that I keep handy on that and please read words such as frequently, sometimes and so on carefully. There are some "iffy" areas. In other words, the implication is nothing is really a sure shot. Just "suggestive."

Hey, sometimes that is the best we can do.
http://www.labtestsonline.org/understanding/analytes/thyroglobulin/test.html

From your description, it does sound like your daughter is in very competent hands with the follow-up and I presume they are keeping her TSH suppressed?


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