Reoccurence of thryoid cancer

nevergiveup51

emma54 said:

Also a swimmer
WOW! My dental hygenist briefly mentioned the flouride and said she was going to look into it, but we both forgot. I am an avid swimmer and have been having trouble since my thyroidectomy. My throat gets really dry when I swim and I am coughing a lot more than usual (i always cough)!!! I am going to an ENT on Friday, so I will run this by him. I certainly hope it is not the chlorine or my dog because i will not stop swimming and my dog stays!

Emma, let me know what the
Emma, let me know what the doctor says and your right, how can you ever give up your dog. As far as swimming goes there is always the ocean in the summer of course. Debby

sandykr

nevergiveup51 said:

Swimming
Hi Sandy,

How have you been doing? I have been exercising everyday and doing yoga trying to keep from getting too nervous. I have a doctors appt. on Feb 9th, ENT to check my voice box, wish me luck. Have you done your iodine treatment yet? One of your postings you mentioned that you swam. I just wanted to mentioned that during my researching one article mentioned that individuals with either thyroid problems or thyroid cancer should not drink fluoride and chlorinated water. I don't know if that would include swimming only because it has great amounts of chlorine in the water. I am going to look into it further but I just wanted to mention this to you just in case your weren't aware of it. I'll talk to you later.

Debby

never give up swimming!!
That is interesting what you say about floride, I will also ask my dentist.
I am now almost 4 weeks post RAI, they gave me 2 weeks off of work, one for isolation and the second week was for me..........rehab week. I was in the gym every day just getting back in the swing of things. I didn't over do it, but it felt great to be moving and exercising. I am doing a 10K run on Feb 20! my daughter is doing a half marathon, but 10K is enough for me.

I will try not to drink any water next time I swim!

Write after your Drs. appt.

sandy

Swimmers Unite!!

p.s. I am convinced that all of my sports did help my body readjust post TT and RAI.

emma54

nevergiveup51 said:

Emma, let me know what the
Emma, let me know what the doctor says and your right, how can you ever give up your dog. As far as swimming goes there is always the ocean in the summer of course. Debby

You're right and I happen to
You're right and I happen to live in a state with lots of Ocean. But we never go down there. I have changed my appt. from an ENT to a Pulminary Specialist. I think I might have asthma. But I will ask him. Thanks for your response.

emma54

sandykr said:

never give up swimming!!
That is interesting what you say about floride, I will also ask my dentist.
I am now almost 4 weeks post RAI, they gave me 2 weeks off of work, one for isolation and the second week was for me..........rehab week. I was in the gym every day just getting back in the swing of things. I didn't over do it, but it felt great to be moving and exercising. I am doing a 10K run on Feb 20! my daughter is doing a half marathon, but 10K is enough for me.

I will try not to drink any water next time I swim!

Write after your Drs. appt.

sandy

Swimmers Unite!!

p.s. I am convinced that all of my sports did help my body readjust post TT and RAI.

Hi Sandy,
I'll let you know
Hi Sandy,

I'll let you know what the doctor says. If he doesn't know, I will ask my Endo. He is great! Yes, Swimmers Unite! Good luck on your run. I'm impressed!

emma54

sandykr said:

never give up swimming!!
That is interesting what you say about floride, I will also ask my dentist.
I am now almost 4 weeks post RAI, they gave me 2 weeks off of work, one for isolation and the second week was for me..........rehab week. I was in the gym every day just getting back in the swing of things. I didn't over do it, but it felt great to be moving and exercising. I am doing a 10K run on Feb 20! my daughter is doing a half marathon, but 10K is enough for me.

I will try not to drink any water next time I swim!

Write after your Drs. appt.

sandy

Swimmers Unite!!

p.s. I am convinced that all of my sports did help my body readjust post TT and RAI.

Hi Sandy,
I'll let you know
Hi Sandy,

I'll let you know what the doctor says. If he doesn't know, I will ask my Endo. He is great! Yes, Swimmers Unite! Good luck on your run. I'm impressed!

emma54

sandykr said:

never give up swimming!!
That is interesting what you say about floride, I will also ask my dentist.
I am now almost 4 weeks post RAI, they gave me 2 weeks off of work, one for isolation and the second week was for me..........rehab week. I was in the gym every day just getting back in the swing of things. I didn't over do it, but it felt great to be moving and exercising. I am doing a 10K run on Feb 20! my daughter is doing a half marathon, but 10K is enough for me.

I will try not to drink any water next time I swim!

Write after your Drs. appt.

sandy

Swimmers Unite!!

p.s. I am convinced that all of my sports did help my body readjust post TT and RAI.

Hi Sandy,
I'll let you know
Hi Sandy,

I'll let you know what the doctor says. If he doesn't know, I will ask my Endo. He is great! Yes, Swimmers Unite! Good luck on your run. I'm impressed!

nevergiveup51

sandykr said:

never give up swimming!!
That is interesting what you say about floride, I will also ask my dentist.
I am now almost 4 weeks post RAI, they gave me 2 weeks off of work, one for isolation and the second week was for me..........rehab week. I was in the gym every day just getting back in the swing of things. I didn't over do it, but it felt great to be moving and exercising. I am doing a 10K run on Feb 20! my daughter is doing a half marathon, but 10K is enough for me.

I will try not to drink any water next time I swim!

Write after your Drs. appt.

sandy

Swimmers Unite!!

p.s. I am convinced that all of my sports did help my body readjust post TT and RAI.

I laughed when I read "I
I laughed when I read "I will try not to drink the water" I felt like I was talking to my children. That's great though that you and Emma are so committed. I myself never learned to swimm but I do love the water too. I float, its very relaxing. I better get going now, I have a doctors appointment at 10:30. I'll talk to you guys later.

Debby

sandykr

nevergiveup51 said:

I laughed when I read "I
I laughed when I read "I will try not to drink the water" I felt like I was talking to my children. That's great though that you and Emma are so committed. I myself never learned to swimm but I do love the water too. I float, its very relaxing. I better get going now, I have a doctors appointment at 10:30. I'll talk to you guys later.

Debby

Glad you laughed! When I
Glad you laughed! When I went swimming yesterday...........I thought about it the whole time! It seems to me that you hardly swallow any water, alot of it just goes in and out of your mouth, but you don't really "drink"" it! My thought of the day!

Even if you don't swim, walking in the water is great!

Hope all goes well

sandy

tonesgurl

Blair84 said:

Lovely advice
Hi, thank you for the advice, I've been diagnosed with papillary carcinoma last week and it's been hard.. I will have my surgery soon. Great advice

Bair84,
I just wanted to say
Bair84,

I just wanted to say Good luck with the surgery and that everything u r feeing is normal! We have either been there too or are going through it now (which is the boat I am in).

Here is my story..... My name is Adrian,I am 37 and was dx with papillary thyroid cancer in July 09. I had 3 tumors in left and 1 on the right side largest was almost 4cm so I had TT July 31. I was told that the cancer would be removed once the thyroid was taken out, NOT SO. After sugery I was placed on 75mg of Levothyroxin. August 5th I went for the follow up with the ENT (who performed the surgery) and was told the surgery went well and was passed on to an Endocrinologist. I had alot of questions for the ENT he said "My part is done, anything else you want help with you need to ask the Endo." Needless to say I was in shock and pissed off, they damn near had to have me escorted out of the building!
Sometime in October I went to see the Endo and was told the cancer was still there so I would need to have RAI, my levo was increased to 100mg. I have done alot of blood work as you all have too I'm sure. Then my levo was upped to 137mg. I have been having really bad hypo sypmtoms and I hate it!!!! Extremely tired, forgetful, everything hurts, I can go on but I won't. I had to go off the meds for 6 weeks before the RAI and the lovely LID was just great That was the worst 6 weeks I have ever experienced, anyone that has had to go completely hypo knows the feeling....LOL. I had RAI 160 millicuries on Nov 3 and the body scan Nov 12. When I went for the follow up to that my endo said there was no spread of the cancer but there was alot of residual tissue left over and the scan showed alot of spots???????????? OK and that means what????? I need help from u guys! If my cancer is resistant to the iodine what is next? My doc was hesitant to give me any real info, only telling me the cancer is STILL there and increased my levo to 150mg. So after being told that I have 'the best cancer to have' because it's the easiest to cure why am I not cured. I was told the surgery would remove it, then that the RAI would kill it, do we just live with this cancer or trully get cured from it? I don't have anyone that can relate to what I am goin thru right now and I need some advice. Thanks for letting me vent.

butterfly123

tonesgurl said:

Bair84,
I just wanted to say
Bair84,

I just wanted to say Good luck with the surgery and that everything u r feeing is normal! We have either been there too or are going through it now (which is the boat I am in).

Here is my story..... My name is Adrian,I am 37 and was dx with papillary thyroid cancer in July 09. I had 3 tumors in left and 1 on the right side largest was almost 4cm so I had TT July 31. I was told that the cancer would be removed once the thyroid was taken out, NOT SO. After sugery I was placed on 75mg of Levothyroxin. August 5th I went for the follow up with the ENT (who performed the surgery) and was told the surgery went well and was passed on to an Endocrinologist. I had alot of questions for the ENT he said "My part is done, anything else you want help with you need to ask the Endo." Needless to say I was in shock and pissed off, they damn near had to have me escorted out of the building!
Sometime in October I went to see the Endo and was told the cancer was still there so I would need to have RAI, my levo was increased to 100mg. I have done alot of blood work as you all have too I'm sure. Then my levo was upped to 137mg. I have been having really bad hypo sypmtoms and I hate it!!!! Extremely tired, forgetful, everything hurts, I can go on but I won't. I had to go off the meds for 6 weeks before the RAI and the lovely LID was just great That was the worst 6 weeks I have ever experienced, anyone that has had to go completely hypo knows the feeling....LOL. I had RAI 160 millicuries on Nov 3 and the body scan Nov 12. When I went for the follow up to that my endo said there was no spread of the cancer but there was alot of residual tissue left over and the scan showed alot of spots???????????? OK and that means what????? I need help from u guys! If my cancer is resistant to the iodine what is next? My doc was hesitant to give me any real info, only telling me the cancer is STILL there and increased my levo to 150mg. So after being told that I have 'the best cancer to have' because it's the easiest to cure why am I not cured. I was told the surgery would remove it, then that the RAI would kill it, do we just live with this cancer or trully get cured from it? I don't have anyone that can relate to what I am goin thru right now and I need some advice. Thanks for letting me vent.

venting...
Hi Tonesgurl,
Sorry to hear that you had to go thru all of this. I think one of the important things to find out from your endo is your thyroglobulin level, especially when you were hypo. The level should be very low, almost undetectable. The fact that your post RAI scan lit up in spots is probably good news - it means that the residual cancer and/or thyroid tissue/cells will be treated. Thyroid tissue that does not light up is RAI resistent. I've been told that it takes up to a year for the full affect of the RAI treatment. You know if its been effective by your thyroglobulin level. I would expect in a year your endo will test your thyroglobulin level by either having you go hypo again (and it stinks) or by giving you thyrogen shots. I know it's difficult not to worry....But remember that both healthy thyroid cells and cancer cells make thyroglobulin. Is it possible that the ENT did not get all the thyroid out during the surgery.

The reason for so much levo is to keep your TSH suppressed. An elevated TSH can make the thyroid cells left in your body become active. So if your endo suspects thyroid cancer then you want to keep yout TSH suppressed as you can tolerate.

The reason I may seem to know way too much then I ever thought I would know is that I have recurrent papillary thyroid cancer.

I hope this helps at least a little. Thinking of you and wishing you the best.

tonesgurl

butterfly123 said:

venting...
Hi Tonesgurl,
Sorry to hear that you had to go thru all of this. I think one of the important things to find out from your endo is your thyroglobulin level, especially when you were hypo. The level should be very low, almost undetectable. The fact that your post RAI scan lit up in spots is probably good news - it means that the residual cancer and/or thyroid tissue/cells will be treated. Thyroid tissue that does not light up is RAI resistent. I've been told that it takes up to a year for the full affect of the RAI treatment. You know if its been effective by your thyroglobulin level. I would expect in a year your endo will test your thyroglobulin level by either having you go hypo again (and it stinks) or by giving you thyrogen shots. I know it's difficult not to worry....But remember that both healthy thyroid cells and cancer cells make thyroglobulin. Is it possible that the ENT did not get all the thyroid out during the surgery.

The reason for so much levo is to keep your TSH suppressed. An elevated TSH can make the thyroid cells left in your body become active. So if your endo suspects thyroid cancer then you want to keep yout TSH suppressed as you can tolerate.

The reason I may seem to know way too much then I ever thought I would know is that I have recurrent papillary thyroid cancer.

I hope this helps at least a little. Thinking of you and wishing you the best.

Buterfly123,
I have been
Buterfly123,

I have been hypo (off the meds) for 6 weeks before the RAI treatment. I hated every minute of it!!!! I had 160 millicuries of the RAI. I have had my Levo changed from 75, 137,150 and currently on 200. My thyroglobulin was 6.9 and the Endo says we may have to do another round of the RAI.
I have had to learn to be patient, with all the waiting we have to do! I go bavk to the Endo in March, my new ailment is degenerative disc/joint disease in my back with a protrusion at L5.................Just gets better and better. LOL
I am keeping as positive as possible though I am in alot of pain.

Thank you for ur response it helped me alot.

Adrian

nevergiveup51

sandykr said:

Glad you laughed! When I
Glad you laughed! When I went swimming yesterday...........I thought about it the whole time! It seems to me that you hardly swallow any water, alot of it just goes in and out of your mouth, but you don't really "drink"" it! My thought of the day!

Even if you don't swim, walking in the water is great!

Hope all goes well

sandy

Hi Sandy, I replied
Hi Sandy,

I replied yesterday but I guess it didn't go through. How are you feeling? My sister is doing good after her iodine treatment. She is a strong girl. Good news, I went to the ENT and he said everything looks normal so that's a positive. I called the surgeons office a while ago to see if they can push me up for the surgery but no one has gotten back to me yet. I'll try calling tomorrow. This waiting is not good. Talk to you soon. Debby

sandykr

nevergiveup51 said:

Hi Sandy, I replied
Hi Sandy,

I replied yesterday but I guess it didn't go through. How are you feeling? My sister is doing good after her iodine treatment. She is a strong girl. Good news, I went to the ENT and he said everything looks normal so that's a positive. I called the surgeons office a while ago to see if they can push me up for the surgery but no one has gotten back to me yet. I'll try calling tomorrow. This waiting is not good. Talk to you soon. Debby

Debby
Glad to hear that your sister is doing well! You too will be fine, just a few more weeks, right? I'm doing good, I'll post a picture when I finish my 10K!!

keep me posted

sandy

LMedlin

butterfly123 said:

venting...
Hi Tonesgurl,
Sorry to hear that you had to go thru all of this. I think one of the important things to find out from your endo is your thyroglobulin level, especially when you were hypo. The level should be very low, almost undetectable. The fact that your post RAI scan lit up in spots is probably good news - it means that the residual cancer and/or thyroid tissue/cells will be treated. Thyroid tissue that does not light up is RAI resistent. I've been told that it takes up to a year for the full affect of the RAI treatment. You know if its been effective by your thyroglobulin level. I would expect in a year your endo will test your thyroglobulin level by either having you go hypo again (and it stinks) or by giving you thyrogen shots. I know it's difficult not to worry....But remember that both healthy thyroid cells and cancer cells make thyroglobulin. Is it possible that the ENT did not get all the thyroid out during the surgery.

The reason for so much levo is to keep your TSH suppressed. An elevated TSH can make the thyroid cells left in your body become active. So if your endo suspects thyroid cancer then you want to keep yout TSH suppressed as you can tolerate.

The reason I may seem to know way too much then I ever thought I would know is that I have recurrent papillary thyroid cancer.

I hope this helps at least a little. Thinking of you and wishing you the best.

Butterfly123
Since you have had a recurrent papillary thyroid cancer I am hoping you can help me.. When yours returned where was it located. I have been doing research and found that sometimes it returns in the lungs or breasts of women.. Also I found and article that state that I131-RAI in certain dosages may cause leukemia in patients later. Sorry to be so vague but I have recently been told that my TSH is 35.. Yes High.. I had Papillary thyroid cancer in 2003 and was treated with RAI six weeks after total thyroidectomy.. I am now worried.. My doctor was making comments about possible Pituitary gland problems, brain tumors and then in the same sentence he said I had him baffled.. I am sort of own my own until I go to the endo next week however the primary doctor is scaring the crap out of me.. Do you have any advice? I know I should not let this worry me too much however with how I have been feeling for the past few months I wouldn't.. I am on Levothyrozine 275... So my thyroid tsh should be suppressed.. Its just crazy.. Any advice would help.. I cant talk to my family about this. My mom is going through enough and my husband doesn't want to hear it. thanks for your time..

butterfly123

LMedlin said:

Butterfly123
Since you have had a recurrent papillary thyroid cancer I am hoping you can help me.. When yours returned where was it located. I have been doing research and found that sometimes it returns in the lungs or breasts of women.. Also I found and article that state that I131-RAI in certain dosages may cause leukemia in patients later. Sorry to be so vague but I have recently been told that my TSH is 35.. Yes High.. I had Papillary thyroid cancer in 2003 and was treated with RAI six weeks after total thyroidectomy.. I am now worried.. My doctor was making comments about possible Pituitary gland problems, brain tumors and then in the same sentence he said I had him baffled.. I am sort of own my own until I go to the endo next week however the primary doctor is scaring the crap out of me.. Do you have any advice? I know I should not let this worry me too much however with how I have been feeling for the past few months I wouldn't.. I am on Levothyrozine 275... So my thyroid tsh should be suppressed.. Its just crazy.. Any advice would help.. I cant talk to my family about this. My mom is going through enough and my husband doesn't want to hear it. thanks for your time..

Hello Lmedlin
Hi Lmedlin-
My recurrent papillary thyroid cancer (follicular variant) was discovered by a routine thyroglobulin (Tg) blood test. TSH is the amount of stuff your pituitary gland makes which tells your thyroid cells to make more stuff....I think I have that correct . Your thyroid meds (Levothyrozine) after TT for thyroid cancer needs to be suppressed so your body does not "activate" any left over thyroid cells/cancer. Thyroglobulin is the stuff that is normally made from thyroid cells (or thyroid cancer). So the docs use Tg as a cancer marker after TT because the Tg level should be undetectable after RAI treatment.

Is it your TSH or Tg level that is off? That would be very helpful to know. I have heard that the pituitary gland can get a little off after TT and especially after being hypothyroid. I also know that using generic thryoid meds may not be as good as using brand name. If it is your TSH you may want to switch to a brand name version.

As far as my reoccurance, I am a rare case. I had my TT back in 2004 (stage 1, no lymph node involvment). I was the text book example of stage 1 thryoid cancer and supposed to be in the 98% cureable bracket. Well, then almost 4 years post TT, my throglobulin level was 6 while on thyroid meds. My tg level was always below 1 before this time. It went all the way up to 55 w/thyrogen injections and 150 while hypo.

It took about 6 months to locate where the thyroid cancer was....I had neck ultrasounds, MRI (to look at deep lymph nodes), CT Chest, CT brain, RAI tracer dose which were all negative. I finally had a PET/CT scan done that was positive. The 1CM tumor is in my upper cervical spine. So I was treated with RAI but the tumor did not take up RAI. Tumors can dedifferntiate (and one of the dedifferentiate marker is losing its (radio)iodine uptake). I am now looking at beam radiation. If it is your Tg, you need to have more tests done to find it. I am very, very fortunate that my doctor was determined. I also have microscopic mets to both lungs and I found this out only after having the RAI (because my lungs "lighted" up). If anyone has had either cervical spine tumors or the micro mets I would love to hear from you. I am exploring my treatment options but I am uncertain on what to do since I cannot seem to find anyone with a case like mine.

Please let me know if it is your TSH or Tg? Since your doc mentioned Pituitary and the brain, it could very well be your pituitary gland.

Look forward to your reply. Hope this helps and wishing you the best!

LMedlin

butterfly123 said:

Hello Lmedlin
Hi Lmedlin-
My recurrent papillary thyroid cancer (follicular variant) was discovered by a routine thyroglobulin (Tg) blood test. TSH is the amount of stuff your pituitary gland makes which tells your thyroid cells to make more stuff....I think I have that correct . Your thyroid meds (Levothyrozine) after TT for thyroid cancer needs to be suppressed so your body does not "activate" any left over thyroid cells/cancer. Thyroglobulin is the stuff that is normally made from thyroid cells (or thyroid cancer). So the docs use Tg as a cancer marker after TT because the Tg level should be undetectable after RAI treatment.

Is it your TSH or Tg level that is off? That would be very helpful to know. I have heard that the pituitary gland can get a little off after TT and especially after being hypothyroid. I also know that using generic thryoid meds may not be as good as using brand name. If it is your TSH you may want to switch to a brand name version.

As far as my reoccurance, I am a rare case. I had my TT back in 2004 (stage 1, no lymph node involvment). I was the text book example of stage 1 thryoid cancer and supposed to be in the 98% cureable bracket. Well, then almost 4 years post TT, my throglobulin level was 6 while on thyroid meds. My tg level was always below 1 before this time. It went all the way up to 55 w/thyrogen injections and 150 while hypo.

It took about 6 months to locate where the thyroid cancer was....I had neck ultrasounds, MRI (to look at deep lymph nodes), CT Chest, CT brain, RAI tracer dose which were all negative. I finally had a PET/CT scan done that was positive. The 1CM tumor is in my upper cervical spine. So I was treated with RAI but the tumor did not take up RAI. Tumors can dedifferntiate (and one of the dedifferentiate marker is losing its (radio)iodine uptake). I am now looking at beam radiation. If it is your Tg, you need to have more tests done to find it. I am very, very fortunate that my doctor was determined. I also have microscopic mets to both lungs and I found this out only after having the RAI (because my lungs "lighted" up). If anyone has had either cervical spine tumors or the micro mets I would love to hear from you. I am exploring my treatment options but I am uncertain on what to do since I cannot seem to find anyone with a case like mine.

Please let me know if it is your TSH or Tg? Since your doc mentioned Pituitary and the brain, it could very well be your pituitary gland.

Look forward to your reply. Hope this helps and wishing you the best!

Good Afternoon,
Good Afternoon, Butterfly123..

It is my TSH that is up.. I moved to Florida in 2007 and since then none of the Endocrinologists have done a Tg.. Why I don't know but they have not.. I am in the process of changing Endocrinologists again trying to find one that actually follows the guidelines so that I can get the testing that is needed. I appreciate your help.. My brain is not working well lately.. My memory is not what it use to be.. I am just trying to figure this out.. Before I was diagnosed with the cancer I went through 15 different doctors and was even told it was all in my head that I needed to see a shrink.. So I am just trying to push my doctors to run the appropriate tests.. I do go tomorrow for a UGI to see if my stomach is why I still have difficulty swallowing. they will also do a dilation of my esophagus at the time I am there.. I then go Thursday to have a sonogram of my abdomen because of pain I have been having.. The doctor has changed my medication to name brand again. which is what I was on til I moved here. I changed due to the cost difference when my husband lost his job.

I hope all goes well with you. I have looked into the cancer treatment centers of America. They have a lot of information on their website as well as a way for you to chat with someone there.

Yes you have been a great help and I really appreciate you listening to me. My husband doesn't want to hear anything so I just feel so alone. Its hard to do this on your own when you know what the chances are. Thank you.

Lisa

butterfly123

LMedlin said:

Good Afternoon,
Good Afternoon, Butterfly123..

It is my TSH that is up.. I moved to Florida in 2007 and since then none of the Endocrinologists have done a Tg.. Why I don't know but they have not.. I am in the process of changing Endocrinologists again trying to find one that actually follows the guidelines so that I can get the testing that is needed. I appreciate your help.. My brain is not working well lately.. My memory is not what it use to be.. I am just trying to figure this out.. Before I was diagnosed with the cancer I went through 15 different doctors and was even told it was all in my head that I needed to see a shrink.. So I am just trying to push my doctors to run the appropriate tests.. I do go tomorrow for a UGI to see if my stomach is why I still have difficulty swallowing. they will also do a dilation of my esophagus at the time I am there.. I then go Thursday to have a sonogram of my abdomen because of pain I have been having.. The doctor has changed my medication to name brand again. which is what I was on til I moved here. I changed due to the cost difference when my husband lost his job.

I hope all goes well with you. I have looked into the cancer treatment centers of America. They have a lot of information on their website as well as a way for you to chat with someone there.

Yes you have been a great help and I really appreciate you listening to me. My husband doesn't want to hear anything so I just feel so alone. Its hard to do this on your own when you know what the chances are. Thank you.

Lisa

LMedlin
As you probably know, your pituitary gland is pretty important and I hope you find out what is going on with yours. It sounds like your symptoms could be related. Good luck and let me know how you make out with your appt.

BellsAngel69

butterfly123 said:

Hello Lmedlin
Hi Lmedlin-
My recurrent papillary thyroid cancer (follicular variant) was discovered by a routine thyroglobulin (Tg) blood test. TSH is the amount of stuff your pituitary gland makes which tells your thyroid cells to make more stuff....I think I have that correct . Your thyroid meds (Levothyrozine) after TT for thyroid cancer needs to be suppressed so your body does not "activate" any left over thyroid cells/cancer. Thyroglobulin is the stuff that is normally made from thyroid cells (or thyroid cancer). So the docs use Tg as a cancer marker after TT because the Tg level should be undetectable after RAI treatment.

Is it your TSH or Tg level that is off? That would be very helpful to know. I have heard that the pituitary gland can get a little off after TT and especially after being hypothyroid. I also know that using generic thryoid meds may not be as good as using brand name. If it is your TSH you may want to switch to a brand name version.

As far as my reoccurance, I am a rare case. I had my TT back in 2004 (stage 1, no lymph node involvment). I was the text book example of stage 1 thryoid cancer and supposed to be in the 98% cureable bracket. Well, then almost 4 years post TT, my throglobulin level was 6 while on thyroid meds. My tg level was always below 1 before this time. It went all the way up to 55 w/thyrogen injections and 150 while hypo.

It took about 6 months to locate where the thyroid cancer was....I had neck ultrasounds, MRI (to look at deep lymph nodes), CT Chest, CT brain, RAI tracer dose which were all negative. I finally had a PET/CT scan done that was positive. The 1CM tumor is in my upper cervical spine. So I was treated with RAI but the tumor did not take up RAI. Tumors can dedifferntiate (and one of the dedifferentiate marker is losing its (radio)iodine uptake). I am now looking at beam radiation. If it is your Tg, you need to have more tests done to find it. I am very, very fortunate that my doctor was determined. I also have microscopic mets to both lungs and I found this out only after having the RAI (because my lungs "lighted" up). If anyone has had either cervical spine tumors or the micro mets I would love to hear from you. I am exploring my treatment options but I am uncertain on what to do since I cannot seem to find anyone with a case like mine.

Please let me know if it is your TSH or Tg? Since your doc mentioned Pituitary and the brain, it could very well be your pituitary gland.

Look forward to your reply. Hope this helps and wishing you the best!

butterfly123
I had well-differentiated follicular cancer with hurthle cell variant. Had a TT Feb. 2004. Had RAI treatment and subsequent yearly follow ups were fine for two years so my endocinologist let me skip a year. The very next year, my TSH was rising. RAI scans showed a metastasis to my hip bone. I was given another I-131 treament, but my TSH never went back down. Six months later it was even higher so I had a PET and RAI scan and both showed the same spot on my hip bone. The bone/lesion didn't absorb the RAI, so I had surgery to remove it and was sent on my way. Six months later my TSH was even higher, but my PET was clean or so I was told. They actually saw something in the same area last year but made a judgment call that it was just passing through my body and nothing was there because they really couldn't see anything lighting up. Six months after that, my TSH had quadrupled. Antother PET and RAI scan showed a spot in what they thought was my stomach. Test results have now shown it's in my liver.

Hurthle Cell Cancer is vary rare, but is usually the type that presents the most metastasis, 34% of people diagnosed with HCC have a metastasis somewhere down the line. It is almost unheard of for it to go to the liver, less than 0.5% have a liver metastasis, so you can imagine how I feel. My initial diagnosis was also good, in the 98% I would do fine. There aren't any articles to research it's so rare. So now I find myself facing a liver resection. They want to take my entire left lobe out for one little lesion. This really sucks big time. I'm now going to go to Johns Hopkins to find alternative treatment to try to control my TSH so I don't have more reocurrences, or maybe give me a break and put it into remission for a while. Of course this is after I have half of my liver removed.

Yeah, "Best kind of cancer to get." Did they tell you that too?

butterfly123

BellsAngel69 said:

butterfly123
I had well-differentiated follicular cancer with hurthle cell variant. Had a TT Feb. 2004. Had RAI treatment and subsequent yearly follow ups were fine for two years so my endocinologist let me skip a year. The very next year, my TSH was rising. RAI scans showed a metastasis to my hip bone. I was given another I-131 treament, but my TSH never went back down. Six months later it was even higher so I had a PET and RAI scan and both showed the same spot on my hip bone. The bone/lesion didn't absorb the RAI, so I had surgery to remove it and was sent on my way. Six months later my TSH was even higher, but my PET was clean or so I was told. They actually saw something in the same area last year but made a judgment call that it was just passing through my body and nothing was there because they really couldn't see anything lighting up. Six months after that, my TSH had quadrupled. Antother PET and RAI scan showed a spot in what they thought was my stomach. Test results have now shown it's in my liver.

Hurthle Cell Cancer is vary rare, but is usually the type that presents the most metastasis, 34% of people diagnosed with HCC have a metastasis somewhere down the line. It is almost unheard of for it to go to the liver, less than 0.5% have a liver metastasis, so you can imagine how I feel. My initial diagnosis was also good, in the 98% I would do fine. There aren't any articles to research it's so rare. So now I find myself facing a liver resection. They want to take my entire left lobe out for one little lesion. This really sucks big time. I'm now going to go to Johns Hopkins to find alternative treatment to try to control my TSH so I don't have more reocurrences, or maybe give me a break and put it into remission for a while. Of course this is after I have half of my liver removed.

Yeah, "Best kind of cancer to get." Did they tell you that too?

BellsAngel69
Wow. I am sorry you are going through all of this. It looks like we are both very special people. I wish you the best and you're right it does really suck big time. Yes I was told that I should be very happy that I have thyroid cancer. That statement makes me really angry!!! Looks like we proved all those docs wrong! I am sure you now get every doctors attention when you tell them you have liver mets from thyroid cancer. I hope that your treatments at John Hopkins are successful and give you some relief.

Quick question...it is your TSH or Tg that is rising?

butterfly123

BellsAngel69 said:

butterfly123
I had well-differentiated follicular cancer with hurthle cell variant. Had a TT Feb. 2004. Had RAI treatment and subsequent yearly follow ups were fine for two years so my endocinologist let me skip a year. The very next year, my TSH was rising. RAI scans showed a metastasis to my hip bone. I was given another I-131 treament, but my TSH never went back down. Six months later it was even higher so I had a PET and RAI scan and both showed the same spot on my hip bone. The bone/lesion didn't absorb the RAI, so I had surgery to remove it and was sent on my way. Six months later my TSH was even higher, but my PET was clean or so I was told. They actually saw something in the same area last year but made a judgment call that it was just passing through my body and nothing was there because they really couldn't see anything lighting up. Six months after that, my TSH had quadrupled. Antother PET and RAI scan showed a spot in what they thought was my stomach. Test results have now shown it's in my liver.

Hurthle Cell Cancer is vary rare, but is usually the type that presents the most metastasis, 34% of people diagnosed with HCC have a metastasis somewhere down the line. It is almost unheard of for it to go to the liver, less than 0.5% have a liver metastasis, so you can imagine how I feel. My initial diagnosis was also good, in the 98% I would do fine. There aren't any articles to research it's so rare. So now I find myself facing a liver resection. They want to take my entire left lobe out for one little lesion. This really sucks big time. I'm now going to go to Johns Hopkins to find alternative treatment to try to control my TSH so I don't have more reocurrences, or maybe give me a break and put it into remission for a while. Of course this is after I have half of my liver removed.

Yeah, "Best kind of cancer to get." Did they tell you that too?

BellsAngel69
Wow. I am sorry you are going through all of this. It looks like we are both very special people. I wish you the best and you're right it does really suck big time. Yes I was told that I should be very happy that I have thyroid cancer. That statement makes me really angry!!! Looks like we proved all those docs wrong! I am sure you now get every doctors attention when you tell them you have liver mets from thyroid cancer. I hope that your treatments at John Hopkins are successful and give you some relief.

Quick question...it is your TSH or Tg that is rising?