The THYROID Thread

[mrsklamc]

Update on the "thyroid cancer? sign me up" lady. Looks like she did end up having cancer, and maybe that silly post was written out of denial.

http://www.huffingtonpost.com/michelle-baker/yoga-benefits_b_2849811.html

 

[Christine]

luvmarypoppins--I think the protocol is all over the place. My endo told me that the "new" thinking was Thyrogen and blood testing. But you are a unique case and I think based on the extensive and aggressive thyroid cancer you have, I am not surprised on the "5 Year Scan" thing. I also think that there are general recommendations that go out and your doctor has the ultimate choice to decide what they believe is the safest protocol.

I know you don't want more radiation but you can try to comfort yourself with the fact that the scan dose is not too high.

 

[mrsklamc]

It's only been two years since my 'clean' scan and she wants to do it again. Hope she starts reading up on some of this new literature.

 

[bhagaman]

Will be 3 years in October since my complete thyroidectomy and the removal of 2 parathyroids and 24 lymph nodes (7 were cancerous, parathyroids were benign) when I was 19. I have had two ultrasounds on my neck in the past year which have shown a few lymph nodes enlarged. My endo says they have not grown any bigger, which must be a good sign I suppose. This last Monday and Tuesday I had two Thyrogen shots, followed by a blood test Wednesday. I had an I 131 scan yesterday and the result came in today. My scan came up negative, which is good news. But my thyroglobulin level has bumped up a bit. Doc says not a lot but there is definitely thyroid tissue somewhere. She is scheduling me a CT Scan and potentially a biopsy on those lymph nodes in my neck. Anyone else go through this? Did you scan come up negative but there was something somewhere that the scan couldn't pick up? I'm a little nervous. Any advice or insight would help, thank you!

 

[Christine]

Will be 3 years in October since my complete thyroidectomy and the removal of 2 parathyroids and 24 lymph nodes (7 were cancerous, parathyroids were benign) when I was 19. I have had two ultrasounds on my neck in the past year which have shown a few lymph nodes enlarged. My endo says they have not grown any bigger, which must be a good sign I suppose. This last Monday and Tuesday I had two Thyrogen shots, followed by a blood test Wednesday. I had an I 131 scan yesterday and the result came in today. My scan came up negative, which is good news. But my thyroglobulin level has bumped up a bit. Doc says not a lot but there is definitely thyroid tissue somewhere. She is scheduling me a CT Scan and potentially a biopsy on those lymph nodes in my neck. Anyone else go through this? Did you scan come up negative but there was something somewhere that the scan couldn't pick up? I'm a little nervous. Any advice or insight would help, thank you!

I haven't had this happen personally; however, I do know that you can have a negative scan and a positive Tg. Tg is *supposed* to be THE gold standard for thyroid cancer. Alternatively, you can have a positive scan and a negative Tg which is supposed to be less of a concern. Remnant thyroid tissue produces Tg and so does very small cells of thyroid cancer. Normal thyroid tissue would show up clearly on a scan. Thyroid cancer cells--if not well-differentiated--will often now "glow" as much because they are not behaving as normal thyroid cells.

I actually haven't heard of people following up with a CT for thyroid cancer unless they were trying to get a better look at large masses to see what the size is like. I'm not thinking that's your case as an ultrasound would have picked that up. So that part, I'm not sure of. More than likely, it is the nodes in your neck. My coworker has had thyroid cancer for over 20 years. She always gets a clean scan, but her Tg is persistently elevated. They suspect it's in her nodes but they've removed many and still it persists. She's had alcohol ablation of the nodes. Still has an elevated Tg. It does not seem to really impact her except that she spends a LOT of time being monitored.

Did they, by chance, tell you what your Tg level is?

 

[bhagaman]

I haven't had this happen personally; however, I do know that you can have a negative scan and a positive Tg. Tg is *supposed* to be THE gold standard for thyroid cancer. Alternatively, you can have a positive scan and a negative Tg which is supposed to be less of a concern. Remnant thyroid tissue produces Tg and so does very small cells of thyroid cancer. Normal thyroid tissue would show up clearly on a scan. Thyroid cancer cells--if not well-differentiated--will often now "glow" as much because they are not behaving as normal thyroid cells.

I actually haven't heard of people following up with a CT for thyroid cancer unless they were trying to get a better look at large masses to see what the size is like. I'm not thinking that's your case as an ultrasound would have picked that up. So that part, I'm not sure of. More than likely, it is the nodes in your neck. My coworker has had thyroid cancer for over 20 years. She always gets a clean scan, but her Tg is persistently elevated. They suspect it's in her nodes but they've removed many and still it persists. She's had alcohol ablation of the nodes. Still has an elevated Tg. It does not seem to really impact her except that she spends a LOT of time being monitored.

Did they, by chance, tell you what your Tg level is?

For some reason I want to say a 19. I don't know if it was .19, or what. And that may be completely wrong. My doc doesn't seemed too concerned at this point, because she said the Tg only elevated slightly. She also said she was going back and forth with herself to even biopsy the nodes, so to me that is also assuring that she isn't very concerned. Her exact words were, "I want to get a baseline on you." All of my other blood levels have came back negative, besides this. I've done a little research and I've seen that in my case, with the negative scan/positive Tg, it's very rare. And the only outcomes from there are 1. It's completely unrelated to my original thyroid cancer or 2. it's too small to pick up on a camera, but it is there, somewhere. Hopefully more explanation helps....

 

[mrsklamc]

I also had a negative scan and a positive Tg. They zapped me again and a year later it was not detected.

 

[bhagaman]

I also had a negative scan and a positive Tg. They zapped me again and a year later it was not detected.

Did they do a CT scan or PET to look for the thyroid cells after you had a negative scan positive tg? Or did they just go straight to treatment?

 

[AmazingGrace]

I'm having a thyroid biopsy done on the 29th of May. I'll keep y'all posted!

 

[mrsklamc]

Did they do a CT scan or PET to look for the thyroid cells after you had a negative scan positive tg? Or did they just go straight to treatment?

They did a PET because one radiologist thought maybe he saw something on a lung. My endo didn't think so, but she did the PET scan anyway and sent it to another radiologist who has a lot of experience with metastasized thyca. They didn't see anything but they proceeded with the second dose of RAI based on my Tg.

 

[luvmarypoppins]

bhagaman - I know once I did ask my rad. onc. what would happen with the neg scan and the elevated tg. She said, well that means its somewhere and I have to go and find it. I did ask, well then how will you find it and what will you do.. She said, oh just let me worry about that etc. So I dont know what her plan of action would be.

Its good to know your dr. is on top of it. Sometimes watching and waiting and seeing is a good idea too. If she has your baseline number to start with she will compare it with the next sets of tests. When are they wanting to do another blood test?

Just curious - what was your initial rai dose? and how many positive lymph nodes did you have?

LoriAnn - I hope you will get some answers from the biopsy. I am sure that date cant come fast enough. You sure have been though a lot lately.

And for anyone who is interested...here is a proud mom brag..ds3 got to be student nurse of the day today because his instructor said he wrote the best care plan she has ever seen for a psych rotation! Yeah!

Last time today I am talking to my dh for a week since he cant get calls out in China where he is going.

I am thinking of braving the Be Our Guest lunch line. I am reading the best chance is to get there before 11 am etc.

Anyone see Angie Everhart announcing she has thy ca. I wish some of these celeb cancer people would be good spokespersons etc.

We are having Ethan Zohn from Survivor at my hosp. here for the cancer survivors day. I never go to it but maybe one day the ds will talk me into it. I think its more geared to the people who go to the cancer center which I dont go to. They have dunk the doctor. Hmm, if mine was ever there I would like to drown the dr. and you all know why

 

[bhagaman]

bhagaman - I know once I did ask my rad. onc. what would happen with the neg scan and the elevated tg. She said, well that means its somewhere and I have to go and find it. I did ask, well then how will you find it and what will you do.. She said, oh just let me worry about that etc. So I dont know what her plan of action would be.

Its good to know your dr. is on top of it. Sometimes watching and waiting and seeing is a good idea too. If she has your baseline number to start with she will compare it with the next sets of tests. When are they wanting to do another blood test?

Just curious - what was your initial rai dose? and how many positive lymph nodes did you have?

LoriAnn - I hope you will get some answers from the biopsy. I am sure that date cant come fast enough. You sure have been though a lot lately.

And for anyone who is interested...here is a proud mom brag..ds3 got to be student nurse of the day today because his instructor said he wrote the best care plan she has ever seen for a psych rotation! Yeah!

Last time today I am talking to my dh for a week since he cant get calls out in China where he is going.

I am thinking of braving the Be Our Guest lunch line. I am reading the best chance is to get there before 11 am etc.

Anyone see Angie Everhart announcing she has thy ca. I wish some of these celeb cancer people would be good spokespersons etc.

We are having Ethan Zohn from Survivor at my hosp. here for the cancer survivors day. I never go to it but maybe one day the ds will talk me into it. I think its more geared to the people who go to the cancer center which I dont go to. They have dunk the doctor. Hmm, if mine was ever there I would like to drown the dr. and you all know why

I don't remember what my dose was, this was years ago. I know it wasn't a lot because I did outpatient RAI and was sent home after my pill. Everyone did have to stay away from me though for a few days.

I had my CAT scan today, hopefully results will be in tomorrow. I spoke with my doc this morning and she says that the Tg bump doesn't necessarily mean it's malignant, it just means they may have missed some thyroid tissue when we did my original surgery and treatment.

She also said that my level went up to a 19. I don't know what that means.

 

[luvmarypoppins]

bhagaman - I guess years ago aka 3 is probably an eternity when you are 22.

I would suggest keeping a folder with all your important cancer info like rai dose, maybe a journal, biopsy reports, pathology etc.

Just wondering why your dr. chose the ct scan over the pet scan? What area did you have the ct scan on? Did you have contrast? Because if you need more rai you will have a waiting period for the contrast to clear your body.

I am just thinking I would rather have a pet scan because it would show any cancer not just thyroid that is in your body. I was told it can find something the size of a pin head.

Hope your get good results tomm. and keep us informed. Hang in there.

 

[DisneyNurse19]

Hi everyone,
I was diagnosed with Thyroid Cancer at the age of 5, this month i will be 52. I had 5 operations, no chemo or radiotherapy. I have ugly scars on my neck as they had to operate in 4 places to remove all the cancer but i can live with that. I visit the Royal Marsden every year to have bloods tested and to see the Dr, after all these years they now want to reduce my Levothyroxine which i expect means weight gain although so far so good
Good luck to everyone

 

[Christine]

I don't remember what my dose was, this was years ago. I know it wasn't a lot because I did outpatient RAI and was sent home after my pill. Everyone did have to stay away from me though for a few days.

I had my CAT scan today, hopefully results will be in tomorrow. I spoke with my doc this morning and she says that the Tg bump doesn't necessarily mean it's malignant, it just means they may have missed some thyroid tissue when we did my original surgery and treatment.

She also said that my level went up to a 19. I don't know what that means.

After my thyroid surgery, I definitely had remnant. It was small but visible on a scan. Oddly enough, my Tg was not detectable. Of course, back then, they couldn't measure under "5" so I could have had a detectable Tg of, say, 3 or so.

A Tg of 19 is not horrific but it is higher than would be tolerable for a wait and see attitude. I would also think that you might be able to see a remnant that was producing. Of course, everyone behaves differently. If you had low-dose RAI (which I did--I had 30 mci only), it could be as simple as needing a big dose. That's how I got mine cleaned up.

 

[Christine]

Hi everyone,
I was diagnosed with Thyroid Cancer at the age of 5, this month i will be 52. I had 5 operations, no chemo or radiotherapy. I have ugly scars on my neck as they had to operate in 4 places to remove all the cancer but i can live with that. I visit the Royal Marsden every year to have bloods tested and to see the Dr, after all these years they now want to reduce my Levothyroxine which i expect means weight gain although so far so good
Good luck to everyone

Wow, I think you must be the youngest patient I've ever heard of having thyroid cancer.

Did they attribute your cancer to any sort of radiation exposure?

 

[DisneyNurse19]

Wow, I think you must be the youngest patient I've ever heard of having thyroid cancer.

Did they attribute your cancer to any sort of radiation exposure?

I was told that i was the youngest in the World to have had it and we were given no reason, just one of those things

 

[AmazingGrace]

Okay, so endo called today about my upcoming biopsy. It's a fine needle biopsy with no numbing. NO NUMBING! I was all like whaaaaa? Seriously? How bad does this hurt? Biopsy guy said that a blood draw hurts worse? Really?

 

[Christine]

Okay, so endo called today about my upcoming biopsy. It's a fine needle biopsy with no numbing. NO NUMBING! I was all like whaaaaa? Seriously? How bad does this hurt? Biopsy guy said that a blood draw hurts worse? Really?

I didn't have a fine-needle biopsy of the thyroid but I've had them other places. Nope, no numbing and I have not found them to be painful. I have heard from others who've had the thyroid done that it's really not that bad. Sometimes you can have some bruising after word but that is due to bleeding under the skin.

 

[choppee]

wow- i am so shocked, amazed and thrilled to find this thread! i am dealing with hyperthyroid issues that started in the fall of 2011. the way my thyroid issues were found out was because i was having such terrible headaches and heart palpitations...let's just say that my symptoms were through the roof with all the weight loss, shaking, insomnia, and muscle weakness. it was such a terrible time, and i couldn't get anyone to really understand how awful i felt. compounded upon that, i was in a terrible work situation so my illness had me severely depressed and struggling to stay afloat as a wife, mother and daughter. you guys understand how it is. fast forward to now--i have been on methimazole for a while now, and my dosages are slowly coming down. i started on 40 mg a day (!!!!) and am now taking 5 mg every other day. this is even feeling a bit more than i need as well. my endo is taking more tests to see if we can stop the methimazole altogether. that would be great for me, because i have lost and gained weight so much as of late! when i first started, the methimazole was too strong and put me into hypo mode--i gained almost 25 lbs! now, i would like to go back to my pre-hyper weight which would have me lose about 20 lbs. regardless, i am so glad to be in a healthier place and to meet/speak with other people who know exactly what this thyroid situation is like. thanks to whomever started this thread, and know that i am very grateful for this. though my head knows that there are more out there like me, it is so comforting to see that i am not alone.