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Old 02-09-2006, 07:55 AM   #1
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Unhappy Benign pathology but I still may have thyroid cancer???Nastyhashi,help?

I'm in shock. I just went to my surgeon's for my three week follow-up after my TT. I thought he would be just checking my incision, but he dropped a bomb on me. Although the final pathology report said it was benign, my thyroglobulin levels which were checked as a pre-admission testing 10 days before surgery were at 204 and the normal range is 2 to 35. Thyroglobulin is used as a cancer marker and so he had me get more blood drawn this morning to check what the levels are now. If it is 35 or below he says I'm fine, if it is higher I will need to go hypoT for a full body scan and then RAI.

Has this ever happened to anybody? I now feel as if all the rejoicing was for nothing. It took a week to get the results for my TSH, T3 and T4 last time. I have to wait that long again thinking I may have cancer. I feel devastated here. The only thing I take comfort in is that at least I did give him the go ahead to get the TT or else I might be facing surgery again.

Any input? I've tried to reseach this on the Web and I am finding very little info on a benign path report with high thyroglobulin levels.

Lyse

Last edited by MatthewsMom; 02-09-2006 at 12:45 PM.

 
Old 02-09-2006, 08:01 AM   #2
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Re: Benign pathology but I still may have thyroid cancer???

That really sucks Lyse, I don't have any info. I will keep you in my prayers.

Chrystal

 
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Old 02-09-2006, 08:05 AM   #3
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Re: Benign pathology but I still may have thyroid cancer???

Oh Lyse-

I am so sorry. I have very little knowledge with whole thyroid picture so I can't give advice but I can be a sympathtic ear.

Nikki
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Old 02-09-2006, 08:08 AM   #4
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Re: Benign pathology but I still may have thyroid cancer???

Lyse,
Now hang on here..............I too had high thyroglobulin levels...............does he mean the anti-thyroglobulin antibodies, did they test those???????? Thyroglobulin is produced by the thyroid...........it is a protein from it. It is high for several reasons, not just cancer. Hashi's is one that elevates it............having the anti-thyroglobulin antibodies also makes the thyroglobulin elevate..............I think he is jumping to a huge conclusion. I had high anti-thyroglobulin antibodies...........there were 191 right before surgery and now they are 1.......range same as yours, are you sure he isn't talking about the antibodies which are rare but present in some with hashi's?

Post to nastyhashi...........he is good with the thyroglobulin stuff, he explained it to me eons ago and it was easy as pie to understand.

My dr never remarked on it other than to say that the antibodies and the severe destruction of my gland caused the protein elevation.....................calm down though I think he is making a HUGE jump here. IF a person is found to have a cancerous nodule................they measure thyroglobulin to check if there is remaining thyroid tissue in the body....................as it is a protein...............they measure it "IF" you had cancer.........not diagnosis cancer because of it when you had a benign nodule..........

NASTY are you out there???????????????????

Karen

 
Old 02-09-2006, 08:28 AM   #5
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Re: Benign pathology but I still may have thyroid cancer???

Karen,

How soon after surgery can a thyroglobulin level be rechecked? I don't know if they are supposed to drop down right after surgery or what. I would hate to go through a hypo phase and scanning for nothing. I was so taken aback that I asked him what his gut feeling was because 204 seems so out of range that I right away started questioning a mix up in my path report. He didn't directly answer me (I mean, I know he's not psychic), just repeated that it is used as a cancer marker and that mine was way out of range presurgery.

I am sure it is thyroglobulin level and not antithyroglobulin. It was printed out on the lab paper. When I first saw him before surgery I asked about antibody testing because the pathologist had mentionned the need to test for that when he did my FNA. The surgeon said it was not necessary because we were taking the thing out, I just feel now like more testing should have been done while I still had my thyroid. I can't back track at this point and check things the thyroid was doing when it is gone! What I'm surprised at is that the endo didn't mention anything yesterday, unless the surgeon's office had not faxed that piece of information to him. They said they were going to fax it to him today.

I don't know what to think.

 
Old 02-09-2006, 08:37 AM   #6
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Re: Benign pathology but I still may have thyroid cancer???

OK guys- I'm getting a little nervous here. I asked to have my thyroglobin checked and doc said they will have the thyroid after surgery to check it. Don't know if they did or not - yet.

Should I call and ask or is it too late?

Have an appt with GP 2/17 and I don't know how much she knows about thyroid except she did do the t3/t4 and TSH tests when she found the lump in my neck.

I am sure glad you jumped in Karen. Too bad you are not getting paid for this

Hang in there Lyse, I am sure there is nothing to worry about. We're all pulling for you!!
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Old 02-09-2006, 08:39 AM   #7
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Re: Benign pathology but I still may have thyroid cancer???

I don't want to make anyone panic about their own path reports here. We don't even know if this a valid concern....

 
Old 02-09-2006, 08:50 AM   #8
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Re: Benign pathology but I still may have thyroid cancer???

Don't sweat it Lyse, Actually I knew that this was a possibility after reading a lot on this site. That is why I ASKED for the test beforehand, in case, so they would have something to measure by- at least that's what I read on some site..........somewhere.

Anyway, never worry about posting a concern - they are ALL valid!! And the people here seem to know a lot more than some of the docs!!
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Old 02-09-2006, 12:38 PM   #9
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Re: Benign pathology but I still may have thyroid cancer???

Lyse keeping everything crossed for you x Good luck girl

 
Old 02-09-2006, 01:28 PM   #10
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Re: Benign pathology but I still may have thyroid cancer???

Hang in there...I found this on the web..."Although thyroglobulin levels may be elevated in patients with thyroid cancer, a large number of benign thyroid conditions may also be associated with elevated levels of thyroglobulin, hence an increased thyroglobulin alone in a patient not known to have thyroid cancer is not a sensitive or specific test for the diagnosis of thyroid cancer". hope this helps alittle...Take Care...Bernie

 
Old 02-09-2006, 03:26 PM   #11
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Re: Benign pathology but I still may have thyroid cancer???

I never understood much about thyroglobulin, but my endo. did a test after RAI just for a baseline, but said what really mattered, is the thyroglobulin number when you are very HYPO---when you're off meds, without a thyroid.

An RAI scan will show where there is thyroid tissue, but it doesn't necessarily show if it's cancerous or not. Only the pathology does. You might want a second opinion on your pathology to feel more secure.

 
Old 02-09-2006, 07:40 PM   #12
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Re: Benign pathology but I still may have thyroid cancer???

Lyse........

I have done quite a bit of research today on this and it is VERY common for people with mass destruction of the thyroid gland due to hashi's or nodules to show a high titer of thyroglobulin in their blood and it can occur for a variety of reasons. I could not find ONE case where a person was made to go hypo...........given a body scan based on elevated thyroglobulin levels. It is NOT a determination of cancer by ANY means. It is a protein marker to show a dr that thyroid tissue remains in a person who HAS had thyroid cancer. Girl, before you let this dr send you into hypo land I would get a second opinion. Like I said I too had the elevated thyroglobulin before surgery and they did retest it afterwards...........because I had my anti-tg;s rechecked.......they develop against the thyroglobulin when it is high in the blood due to massive destruction..................I think he is mistaken here and I sure hate to see you get into a hypo mess that is not something that is necessary.

karen

 
Old 02-09-2006, 08:43 PM   #13
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Re: Benign pathology but I still may have thyroid cancer???

Thanks for all your words of encouragement and ideas. I've been an emotional wreck all day, that's not like me but I think the hypo that has been settling in too much has made me somewhat depressed and emotional. I feel like my life has been on hold since October when I found my nodule and it's been too much of an emotional roller-coaster since then. Feels like I've been glued to the phone waiting for the next test result, the next appointment for too long. First I'm told I have cancer, then I research the path terms and find out I may not, then I get a final path report that says I don't and then this today. My husband was floored also because he was there when the surgeon said it was all benign and he doesn't understand why the about face all of a sudden. I had expected to maybe get a cancer diagnosis back then and I think I was much better prepared for it back then, I was so taken by surprise by this possible new development this morning...I didn't even know what questions to ask. I actually had to kick myself to go to my appointment because I though it was kind if unnecessary. I have my endo, my incision is healing fine, I was thinking, I'm done with the surgery part of this.

Reece,
Getting a second opinion on the path report is not a bad idea, but I don't know, do they keep the thyroid tissue around for a while?

Karen,
I did look up a lot of info on all this too and I did find that there are other reasons for high thyroglobulin like FNA, examination and manipulation of the thyroid, post-partum thyroiditis, adenoma...all possible and applicable to me. The only "normal" range I was able to find are these:

At the Toronto General Hospital, normal values are:

0 - 34 ug/L for patients who still have their thyroid gland and

0 - 3 ug/L for patients following surgical removal and thyroid ablation

So, I don't know, is it that 204 is so out there that the surgeon thinks it's just impossible for me not too have cancer? He said he wanted to see me under 35, but I don't have a thyroid, and the values of 0-3 are for people without a thyroid who HAD thyroid ablation. I was discussing this with my husband before, what if it does come back elevated, I will definetly get in touch with the endo and get his opinion, I'm not going to rush into any treatment. I've also read that a single thyroglobulin test is not enough, you need an upward trend over time to talk about recurrence, but then again all the info out there is if you did have cancer and did have RAI. So, I don't know. I also went back to my surgeon's office when I realized something (everything is in the same building), my first test was done at the hospital and sent to an outside lab in Virginia, Quest Diagnostics who did it today, sends it out to Horsham, PA. I've read not all labs use the same assays and that some techniques have the thyroglobulin antibodies effect the results while some other don't. But the surgeon said my worries were for nothing and that the ranges were the same so it was not comparing apple and oranges, which I still think it might.



I have to try and put this on the back burner until I get the results sometime next week and I am having the hardest time doing that.
Lyse

 
Old 02-10-2006, 05:08 AM   #14
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Re: Benign pathology but I still may have thyroid cancer???

I believe they are required to keep tissue around for years. I'm also sure you are fine.

 
Old 02-10-2006, 06:32 AM   #15
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Re: Benign pathology but I still may have thyroid cancer???

Well Lyse.........as I said I had a thyroglobulin level of 191 before sugery and 1 4 months after surgery. Why doesn't he just run the test now. In fact, I asked my surgeon about the elevated level on a previous test and he blew it off giving me a long, technical explanation of the massive destruction that occurs in hashi's and nodule and the thyroglobulin protein is released in abundant amounts. Also, and this is VERY important..........did they test you for anti-thyro antibodies at that time? High levels of THOSE PARTICULAR antibodies cause it to elevate in our blood serum. I would NOT worry. I know this is easier said then done, but really he is kind of putting the horse behind the cart so to speak.................I am sorry you have had so much misinformation and so many "c" scares. It is plain silly what you have been through.........nobody did that to me and it sure made my ordeal much less worrisome.

Let me know how you are today.................

Karen

 
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