Someone please help!

galinbakersfield

I am 5 years post TT, papillary cancer, blood tests early in the year showed a rise in TG and thyroglobulin levels and an ultrasound showed tissue where there wasn't supposed to be any and enlarged lymph nodes. In April of 2013 I went through RAI teatment. I had all the side affects possible. I am currently 6 weeks post RAI treatment and my thyroglobulin levels have gone up since treatment, and he can still feel all my swollen lymph nodes. The Dr wants to wait until I am 3 months out, which is end of July. He has already ordered a repeat blood test and ultrasound. This whole time I have been the 1% of evreything, so I'm sure something is going to come back how I don't want it to. This time I just want to be prepared. Anyone help?

Williamryan

I would be concerned if your

I would be concerned if your levels have risen.  I was in the same situation after 4 years out from removing my thyroid (papillary cancer).  When the cancer returns, it's usually not picked up by the RI 131 test dose / body scan because most times the cancer has evolved to RI 131 resistant.  I would strongly urge your doc to biopsy the new lymph nodes to make sure it hasn't turned into something more than papillary cancer.  If so, there is no protocol treatment, only clnical trial chemo drugs.  You should also get a PET scan and CT scan with contrast to identify location and sizes.  Good luck.  Let me know what happens.

Bill

galinbakersfield

Williamryan said:

I would be concerned if your

I would be concerned if your levels have risen.  I was in the same situation after 4 years out from removing my thyroid (papillary cancer).  When the cancer returns, it's usually not picked up by the RI 131 test dose / body scan because most times the cancer has evolved to RI 131 resistant.  I would strongly urge your doc to biopsy the new lymph nodes to make sure it hasn't turned into something more than papillary cancer.  If so, there is no protocol treatment, only clnical trial chemo drugs.  You should also get a PET scan and CT scan with contrast to identify location and sizes.  Good luck.  Let me know what happens.

Bill

More Results

Thank you very much for the info. I had another ultra sound of lymph nodes on the neck, it states that it is still "unusually large" however there is no "significant change" since the last ultrasound. My problem here is they are big, and they are tender. They do not see any more tissue on the thryoid bed as they did last time but I am still waiting on blood test results to see where thyroglobulin levels are. If they are still elevated then I am going to request more tests, but if not then my Dr wants to play the wait and see game. After 5 yrs of this, I'm over the wait and see game. If he choses to do this  then I will be getting a referal to an ENT. Other than that, I have no idea what my options are. 

Baldy

galinbakersfield said:

More Results

Thank you very much for the info. I had another ultra sound of lymph nodes on the neck, it states that it is still "unusually large" however there is no "significant change" since the last ultrasound. My problem here is they are big, and they are tender. They do not see any more tissue on the thryoid bed as they did last time but I am still waiting on blood test results to see where thyroglobulin levels are. If they are still elevated then I am going to request more tests, but if not then my Dr wants to play the wait and see game. After 5 yrs of this, I'm over the wait and see game. If he choses to do this  then I will be getting a referal to an ENT. Other than that, I have no idea what my options are. 

Lymph Nodes

Hi Gal,

I'm in sort of the same boat as you.  My last two ultrasounds have found suspicious nodes {less than 5mm} in my neck.  Both my surgeon and my endocrinologist have recommended a wait and see approach.  I asked both if we shouldn't excise one or more of the nodes or at least do a fine needle biopsy, but both recommend against it with their main point being, even if they were found to be cancerous, I wouldn't do anything differently than I am now, it would still be "wait and see". 

So, before you submit to surgery or a CT or PET {you want to limit your radiation as much as possible}, ask your doctor what they will do differently if the results are positive than they would do if the results are negative.

Alan

galinbakersfield

Baldy said:

Lymph Nodes

Hi Gal,

I'm in sort of the same boat as you.  My last two ultrasounds have found suspicious nodes {less than 5mm} in my neck.  Both my surgeon and my endocrinologist have recommended a wait and see approach.  I asked both if we shouldn't excise one or more of the nodes or at least do a fine needle biopsy, but both recommend against it with their main point being, even if they were found to be cancerous, I wouldn't do anything differently than I am now, it would still be "wait and see". 

So, before you submit to surgery or a CT or PET {you want to limit your radiation as much as possible}, ask your doctor what they will do differently if the results are positive than they would do if the results are negative.

Alan

My Dr said that if that if my

My Dr said that if that if my thyroglobulin levels did not go down (still waiting on blood tests results) and if they are up and the lymph nodes are still swollen (they are) then we are going to do PET scan, if that doesnt show anything then fine needle biopsy. If thyroglobulin levels are good then I am going to see a ENT because not only are they big, they are very tender. I don't really want to take the wait and see approach, as I've been doing this for a year and a half. Now just waiting for the ENT referal, blood tests to see where to go from here. 

Baldy

galinbakersfield said:

My Dr said that if that if my

My Dr said that if that if my thyroglobulin levels did not go down (still waiting on blood tests results) and if they are up and the lymph nodes are still swollen (they are) then we are going to do PET scan, if that doesnt show anything then fine needle biopsy. If thyroglobulin levels are good then I am going to see a ENT because not only are they big, they are very tender. I don't really want to take the wait and see approach, as I've been doing this for a year and a half. Now just waiting for the ENT referal, blood tests to see where to go from here. 

Wait and See

I agree, I don't like the "wait and see" approach either.  I didn't realize it until this thyca business started, but "wait and see" are the three ugliest words in the English language, I hate them with a passion.  Still, it's almost certainly the best thing to do considering the the state of my cancer.  If it were up to me, I would have the suspicious lymph nodes in my neck out NOW and every lymph node within six inches of their location.  But doctors who have far more knowledge and experience with this than I do say no and I will gladly take their advise even though I'd much rather be doing something, anything.

I'd also like to relate something that happened during my last office visit with my endo.  It's directly related, so this seems to be a good place.  When my endo was advising me not to have the suspicious lymph nodes in my neck removed, he said something like, "If you have them taken out and they're cancerous, you'll just worry more."  I didn't say anything to him, but I don't think I agree with that.  My first symptom that something was wrong was a swollen lymph node in my neck near my larynx.  My primary care doctor told me to "wait and see" and 9 times out of 10 it will go down by itself.  It didn't and I was a wreck for 4 months until it was biopsied and I found out I had thyroid cancer.  Since then I've had some down times, but not as long or as bad as those 4 months.  In short, I think not knowing is more worrisome than knowing and yet I'm still willing to "wait and see".

galinbakersfield

Baldy said:

Wait and See

I agree, I don't like the "wait and see" approach either.  I didn't realize it until this thyca business started, but "wait and see" are the three ugliest words in the English language, I hate them with a passion.  Still, it's almost certainly the best thing to do considering the the state of my cancer.  If it were up to me, I would have the suspicious lymph nodes in my neck out NOW and every lymph node within six inches of their location.  But doctors who have far more knowledge and experience with this than I do say no and I will gladly take their advise even though I'd much rather be doing something, anything.

I'd also like to relate something that happened during my last office visit with my endo.  It's directly related, so this seems to be a good place.  When my endo was advising me not to have the suspicious lymph nodes in my neck removed, he said something like, "If you have them taken out and they're cancerous, you'll just worry more."  I didn't say anything to him, but I don't think I agree with that.  My first symptom that something was wrong was a swollen lymph node in my neck near my larynx.  My primary care doctor told me to "wait and see" and 9 times out of 10 it will go down by itself.  It didn't and I was a wreck for 4 months until it was biopsied and I found out I had thyroid cancer.  Since then I've had some down times, but not as long or as bad as those 4 months.  In short, I think not knowing is more worrisome than knowing and yet I'm still willing to "wait and see".

Test results

I had my blood test results and the good news is that my thyrogloblulin level went way down. So, I did a FNA about two weeks ago on the lymph nodes that are still swollen. He says that the other cancers we were looking for were not there (so that's a positive)but he said that there is a trace amount of thyca in there but not enough to worry about. So now I am seeing an ENT tomorrow (gues shouldv'e updated tomorrow) and going to get a second opinion. Kind of tired of the wait and see game so I'm going to attemp to at least get a second opinion. After all I've been through in the last 5 years, I really am not happy that they are ok with a "tiny trace" of cancer in the nodes. We shall see.