Re: Trying to decide on 2nd Surgery

[Guest guest]

I hope both you and Cath/ both get some responses from someone

who has been there. For both this message and the preceeding one

('s), it is difficult for most of us to give unbiased opinions,

because nearly everyone on this listserv has undergone a complete

thyroidectomy, followed by RAI and suppressed doses of Levothyroxine

drugs. In general, I think you have to go with what your Drs. suggest

to be on the safe side.

Marilyn

P.S. The preparations for the radioactive iodine treatment are not

necessarily " horrible " . I tolerate it quite well as do others. It

varies from one patient to another.

> Hello.

>

> I am trying to decide on a second thyroidectomy and would appreciate

> feedback from people in the know. Here's the story:

>

> In January I had a partial thyroidectomy to remove a goiter that was

> about the size of a grapefruit. I am a singer and posponed this

> surgery for many years because of the potential risk to my vocal

> chord nerves. But finally felt the time was right and went ahead

> with the surgery. Because I am a singer, when my surgeon got inside

> and saw the situation, he decided to remove only the right side

> because the left looked absolutely perfect. Initially we were all

> thrilled that I'd gotten away with a partial thyroidectomy. Except

> that when the pathology report came back later, it turned out there

> had been a 1.2 cm papillary carcinoma buried deep inside the goiter.

>

> Because of my singing career, my surgeon consulted with 2

> endocrinologists and his mentor who all agreed that I should be

> monitored carefully, but that the odds of a recurrence did not merit

> removing the rest of the gland. So that has been the situation.

>

> Fast forward to now, 9 months later. I just saw the endocrinologist

> who is now adamant that I go back in for a complete thyroidectomy and

> also radioactive iodine treatment.

>

> When I saw the surgeon a few days later, he concurrred.

>

> When I ask why no one said this back in February, no one really has a

> good answer.

>

> I am willing to undergo this protocol if there really is a risk of

> recurrence. But I don't want to get caught up in a fear-based

> medical model if I really am okay.

>

> My current endo says the 1.2 cm was over the cutoff for safety. The

> endo who initially referred me for surgery called it clinically

> insignificant and basically blew it off.

>

> I don't want to be stupid. But I don't want to be run around either.

>

> From what I've read about the preparations for the radioactive iodine

> treatment, it sounds horrible and I'd rather not put myself through

> going hypothyroid if I don't have to.

>

> I don't do well off Synthroid. The current endo dropped my dose from

> 1 mg to .5 and I felt horrible. Now I'm on .88 mg and the verdict is

> not yet in. The thought of going off altogether makes me really

> uncomfortable.

>

> Thanks for reading this. Again, feedback greatly appreciated.

>

> SuzinG

[Guest guest]

I hope both you and Cath/ both get some responses from someone

who has been there. For both this message and the preceeding one

('s), it is difficult for most of us to give unbiased opinions,

because nearly everyone on this listserv has undergone a complete

thyroidectomy, followed by RAI and suppressed doses of Levothyroxine

drugs. In general, I think you have to go with what your Drs. suggest

to be on the safe side.

Marilyn

P.S. The preparations for the radioactive iodine treatment are not

necessarily " horrible " . I tolerate it quite well as do others. It

varies from one patient to another.

> Hello.

>

> I am trying to decide on a second thyroidectomy and would appreciate

> feedback from people in the know. Here's the story:

>

> In January I had a partial thyroidectomy to remove a goiter that was

> about the size of a grapefruit. I am a singer and posponed this

> surgery for many years because of the potential risk to my vocal

> chord nerves. But finally felt the time was right and went ahead

> with the surgery. Because I am a singer, when my surgeon got inside

> and saw the situation, he decided to remove only the right side

> because the left looked absolutely perfect. Initially we were all

> thrilled that I'd gotten away with a partial thyroidectomy. Except

> that when the pathology report came back later, it turned out there

> had been a 1.2 cm papillary carcinoma buried deep inside the goiter.

>

> Because of my singing career, my surgeon consulted with 2

> endocrinologists and his mentor who all agreed that I should be

> monitored carefully, but that the odds of a recurrence did not merit

> removing the rest of the gland. So that has been the situation.

>

> Fast forward to now, 9 months later. I just saw the endocrinologist

> who is now adamant that I go back in for a complete thyroidectomy and

> also radioactive iodine treatment.

>

> When I saw the surgeon a few days later, he concurrred.

>

> When I ask why no one said this back in February, no one really has a

> good answer.

>

> I am willing to undergo this protocol if there really is a risk of

> recurrence. But I don't want to get caught up in a fear-based

> medical model if I really am okay.

>

> My current endo says the 1.2 cm was over the cutoff for safety. The

> endo who initially referred me for surgery called it clinically

> insignificant and basically blew it off.

>

> I don't want to be stupid. But I don't want to be run around either.

>

> From what I've read about the preparations for the radioactive iodine

> treatment, it sounds horrible and I'd rather not put myself through

> going hypothyroid if I don't have to.

>

> I don't do well off Synthroid. The current endo dropped my dose from

> 1 mg to .5 and I felt horrible. Now I'm on .88 mg and the verdict is

> not yet in. The thought of going off altogether makes me really

> uncomfortable.

>

> Thanks for reading this. Again, feedback greatly appreciated.

>

> SuzinG

[Guest guest]

I hope both you and Cath/ both get some responses from someone

who has been there. For both this message and the preceeding one

('s), it is difficult for most of us to give unbiased opinions,

because nearly everyone on this listserv has undergone a complete

thyroidectomy, followed by RAI and suppressed doses of Levothyroxine

drugs. In general, I think you have to go with what your Drs. suggest

to be on the safe side.

Marilyn

P.S. The preparations for the radioactive iodine treatment are not

necessarily " horrible " . I tolerate it quite well as do others. It

varies from one patient to another.

> Hello.

>

> I am trying to decide on a second thyroidectomy and would appreciate

> feedback from people in the know. Here's the story:

>

> In January I had a partial thyroidectomy to remove a goiter that was

> about the size of a grapefruit. I am a singer and posponed this

> surgery for many years because of the potential risk to my vocal

> chord nerves. But finally felt the time was right and went ahead

> with the surgery. Because I am a singer, when my surgeon got inside

> and saw the situation, he decided to remove only the right side

> because the left looked absolutely perfect. Initially we were all

> thrilled that I'd gotten away with a partial thyroidectomy. Except

> that when the pathology report came back later, it turned out there

> had been a 1.2 cm papillary carcinoma buried deep inside the goiter.

>

> Because of my singing career, my surgeon consulted with 2

> endocrinologists and his mentor who all agreed that I should be

> monitored carefully, but that the odds of a recurrence did not merit

> removing the rest of the gland. So that has been the situation.

>

> Fast forward to now, 9 months later. I just saw the endocrinologist

> who is now adamant that I go back in for a complete thyroidectomy and

> also radioactive iodine treatment.

>

> When I saw the surgeon a few days later, he concurrred.

>

> When I ask why no one said this back in February, no one really has a

> good answer.

>

> I am willing to undergo this protocol if there really is a risk of

> recurrence. But I don't want to get caught up in a fear-based

> medical model if I really am okay.

>

> My current endo says the 1.2 cm was over the cutoff for safety. The

> endo who initially referred me for surgery called it clinically

> insignificant and basically blew it off.

>

> I don't want to be stupid. But I don't want to be run around either.

>

> From what I've read about the preparations for the radioactive iodine

> treatment, it sounds horrible and I'd rather not put myself through

> going hypothyroid if I don't have to.

>

> I don't do well off Synthroid. The current endo dropped my dose from

> 1 mg to .5 and I felt horrible. Now I'm on .88 mg and the verdict is

> not yet in. The thought of going off altogether makes me really

> uncomfortable.

>

> Thanks for reading this. Again, feedback greatly appreciated.

>

> SuzinG

[Guest guest]

Hi, Suzin -

I can understand your frustration in having been told one thing and

then being told the opposite 9 months later with no change in your

condition.

There is ALWAYS a chance of recurrence, which is why, even with a TT

(total thyroidectomy), we need to be monitored for the rest of our

lives, and why they keep our TSH levels suppressed to <0.1.

That monitoring is made a bit easier when you have a TT and the RAI

treatment to ablate all remaining thyroid tissue. TG (thyroglobulin)

blood levels can then be used to monitor any possible recurrence,

because TG is only produced by thyroid tissue (normal or cancerous),

Being hypo and doing the RAI is certainly not fun, but in my mind, if

it gives me a better chance of being cancer-free, it's well worth it.

Again, I can sure relate to NOT wanting to have to go through it if

you don't need to.

This doesn't mean that a TT and RAI is the right option for you, and I

would not presume to tell you if it is or is not. That's a decision

you need to make with your doctors. It certainly wouldn't hurt to get

another opinion (ie from another endocrinologist).

And being informed is an excellent thing. I would encourage you to

get copies of all of your medical reports in connection with this.

Find out, if you don't know, exactly what they have been doing to

monitor things for you.

Good luck with your decision - I know it's not an easy one. Keep us

updated.

Cheers,

Alisa

2/15/2002: Nodule found 2/27/2002: FNA

3/4/2002: Hysterectomy/oopherectomy-possible ovarian cancer - BENIGN!!

4/9/2002: TT - Stage 2 pap 2.5 x 2 x 1.6 cm nodule, dx Hashimotos

5/28/2002: TBS and 100 mCi RAI 6/6/2002: TBS - No sign of mets

Currently - TSH 0.06, 140mcg Levoxyl

Age: 48 Location: near Seattle WA

Please feel free to email me privately anytime

Check out my posts:

Radioactive Girl - http://groups.yahoo.com/group/Thyca/message/19472

My LID - http://groups.yahoo.com/group/Thyca/message/15872

My RAI - http://groups.yahoo.com/group/Thyca/message/15873

> Hello.

>

> I am trying to decide on a second thyroidectomy and would appreciate

> feedback from people in the know. Here's the story:

>

> In January I had a partial thyroidectomy to remove a goiter that was

> about the size of a grapefruit. I am a singer and posponed this

> surgery for many years because of the potential risk to my vocal

> chord nerves. But finally felt the time was right and went ahead

> with the surgery. Because I am a singer, when my surgeon got inside

> and saw the situation, he decided to remove only the right side

> because the left looked absolutely perfect. Initially we were all

> thrilled that I'd gotten away with a partial thyroidectomy. Except

> that when the pathology report came back later, it turned out there

> had been a 1.2 cm papillary carcinoma buried deep inside the goiter.

>

> Because of my singing career, my surgeon consulted with 2

> endocrinologists and his mentor who all agreed that I should be

> monitored carefully, but that the odds of a recurrence did not merit

> removing the rest of the gland. So that has been the situation.

>

> Fast forward to now, 9 months later. I just saw the endocrinologist

> who is now adamant that I go back in for a complete thyroidectomy

and

> also radioactive iodine treatment.

>

> When I saw the surgeon a few days later, he concurrred.

>

> When I ask why no one said this back in February, no one really has

a

> good answer.

>

> I am willing to undergo this protocol if there really is a risk of

> recurrence. But I don't want to get caught up in a fear-based

> medical model if I really am okay.

>

> My current endo says the 1.2 cm was over the cutoff for safety. The

> endo who initially referred me for surgery called it clinically

> insignificant and basically blew it off.

>

> I don't want to be stupid. But I don't want to be run around

either.

>

> From what I've read about the preparations for the radioactive

iodine

> treatment, it sounds horrible and I'd rather not put myself through

> going hypothyroid if I don't have to.

>

> I don't do well off Synthroid. The current endo dropped my dose

from

> 1 mg to .5 and I felt horrible. Now I'm on .88 mg and the verdict

is

> not yet in. The thought of going off altogether makes me really

> uncomfortable.

>

> Thanks for reading this. Again, feedback greatly appreciated.

>

> SuzinG

[Guest guest]

Hi, Suzin -

I can understand your frustration in having been told one thing and

then being told the opposite 9 months later with no change in your

condition.

There is ALWAYS a chance of recurrence, which is why, even with a TT

(total thyroidectomy), we need to be monitored for the rest of our

lives, and why they keep our TSH levels suppressed to <0.1.

That monitoring is made a bit easier when you have a TT and the RAI

treatment to ablate all remaining thyroid tissue. TG (thyroglobulin)

blood levels can then be used to monitor any possible recurrence,

because TG is only produced by thyroid tissue (normal or cancerous),

Being hypo and doing the RAI is certainly not fun, but in my mind, if

it gives me a better chance of being cancer-free, it's well worth it.

Again, I can sure relate to NOT wanting to have to go through it if

you don't need to.

This doesn't mean that a TT and RAI is the right option for you, and I

would not presume to tell you if it is or is not. That's a decision

you need to make with your doctors. It certainly wouldn't hurt to get

another opinion (ie from another endocrinologist).

And being informed is an excellent thing. I would encourage you to

get copies of all of your medical reports in connection with this.

Find out, if you don't know, exactly what they have been doing to

monitor things for you.

Good luck with your decision - I know it's not an easy one. Keep us

updated.

Cheers,

Alisa

2/15/2002: Nodule found 2/27/2002: FNA

3/4/2002: Hysterectomy/oopherectomy-possible ovarian cancer - BENIGN!!

4/9/2002: TT - Stage 2 pap 2.5 x 2 x 1.6 cm nodule, dx Hashimotos

5/28/2002: TBS and 100 mCi RAI 6/6/2002: TBS - No sign of mets

Currently - TSH 0.06, 140mcg Levoxyl

Age: 48 Location: near Seattle WA

Please feel free to email me privately anytime

Check out my posts:

Radioactive Girl - http://groups.yahoo.com/group/Thyca/message/19472

My LID - http://groups.yahoo.com/group/Thyca/message/15872

My RAI - http://groups.yahoo.com/group/Thyca/message/15873

> Hello.

>

> I am trying to decide on a second thyroidectomy and would appreciate

> feedback from people in the know. Here's the story:

>

> In January I had a partial thyroidectomy to remove a goiter that was

> about the size of a grapefruit. I am a singer and posponed this

> surgery for many years because of the potential risk to my vocal

> chord nerves. But finally felt the time was right and went ahead

> with the surgery. Because I am a singer, when my surgeon got inside

> and saw the situation, he decided to remove only the right side

> because the left looked absolutely perfect. Initially we were all

> thrilled that I'd gotten away with a partial thyroidectomy. Except

> that when the pathology report came back later, it turned out there

> had been a 1.2 cm papillary carcinoma buried deep inside the goiter.

>

> Because of my singing career, my surgeon consulted with 2

> endocrinologists and his mentor who all agreed that I should be

> monitored carefully, but that the odds of a recurrence did not merit

> removing the rest of the gland. So that has been the situation.

>

> Fast forward to now, 9 months later. I just saw the endocrinologist

> who is now adamant that I go back in for a complete thyroidectomy

and

> also radioactive iodine treatment.

>

> When I saw the surgeon a few days later, he concurrred.

>

> When I ask why no one said this back in February, no one really has

a

> good answer.

>

> I am willing to undergo this protocol if there really is a risk of

> recurrence. But I don't want to get caught up in a fear-based

> medical model if I really am okay.

>

> My current endo says the 1.2 cm was over the cutoff for safety. The

> endo who initially referred me for surgery called it clinically

> insignificant and basically blew it off.

>

> I don't want to be stupid. But I don't want to be run around

either.

>

> From what I've read about the preparations for the radioactive

iodine

> treatment, it sounds horrible and I'd rather not put myself through

> going hypothyroid if I don't have to.

>

> I don't do well off Synthroid. The current endo dropped my dose

from

> 1 mg to .5 and I felt horrible. Now I'm on .88 mg and the verdict

is

> not yet in. The thought of going off altogether makes me really

> uncomfortable.

>

> Thanks for reading this. Again, feedback greatly appreciated.

>

> SuzinG

[Guest guest]

Hi, Suzin -

I can understand your frustration in having been told one thing and

then being told the opposite 9 months later with no change in your

condition.

There is ALWAYS a chance of recurrence, which is why, even with a TT

(total thyroidectomy), we need to be monitored for the rest of our

lives, and why they keep our TSH levels suppressed to <0.1.

That monitoring is made a bit easier when you have a TT and the RAI

treatment to ablate all remaining thyroid tissue. TG (thyroglobulin)

blood levels can then be used to monitor any possible recurrence,

because TG is only produced by thyroid tissue (normal or cancerous),

Being hypo and doing the RAI is certainly not fun, but in my mind, if

it gives me a better chance of being cancer-free, it's well worth it.

Again, I can sure relate to NOT wanting to have to go through it if

you don't need to.

This doesn't mean that a TT and RAI is the right option for you, and I

would not presume to tell you if it is or is not. That's a decision

you need to make with your doctors. It certainly wouldn't hurt to get

another opinion (ie from another endocrinologist).

And being informed is an excellent thing. I would encourage you to

get copies of all of your medical reports in connection with this.

Find out, if you don't know, exactly what they have been doing to

monitor things for you.

Good luck with your decision - I know it's not an easy one. Keep us

updated.

Cheers,

Alisa

2/15/2002: Nodule found 2/27/2002: FNA

3/4/2002: Hysterectomy/oopherectomy-possible ovarian cancer - BENIGN!!

4/9/2002: TT - Stage 2 pap 2.5 x 2 x 1.6 cm nodule, dx Hashimotos

5/28/2002: TBS and 100 mCi RAI 6/6/2002: TBS - No sign of mets

Currently - TSH 0.06, 140mcg Levoxyl

Age: 48 Location: near Seattle WA

Please feel free to email me privately anytime

Check out my posts:

Radioactive Girl - http://groups.yahoo.com/group/Thyca/message/19472

My LID - http://groups.yahoo.com/group/Thyca/message/15872

My RAI - http://groups.yahoo.com/group/Thyca/message/15873

> Hello.

>

> I am trying to decide on a second thyroidectomy and would appreciate

> feedback from people in the know. Here's the story:

>

> In January I had a partial thyroidectomy to remove a goiter that was

> about the size of a grapefruit. I am a singer and posponed this

> surgery for many years because of the potential risk to my vocal

> chord nerves. But finally felt the time was right and went ahead

> with the surgery. Because I am a singer, when my surgeon got inside

> and saw the situation, he decided to remove only the right side

> because the left looked absolutely perfect. Initially we were all

> thrilled that I'd gotten away with a partial thyroidectomy. Except

> that when the pathology report came back later, it turned out there

> had been a 1.2 cm papillary carcinoma buried deep inside the goiter.

>

> Because of my singing career, my surgeon consulted with 2

> endocrinologists and his mentor who all agreed that I should be

> monitored carefully, but that the odds of a recurrence did not merit

> removing the rest of the gland. So that has been the situation.

>

> Fast forward to now, 9 months later. I just saw the endocrinologist

> who is now adamant that I go back in for a complete thyroidectomy

and

> also radioactive iodine treatment.

>

> When I saw the surgeon a few days later, he concurrred.

>

> When I ask why no one said this back in February, no one really has

a

> good answer.

>

> I am willing to undergo this protocol if there really is a risk of

> recurrence. But I don't want to get caught up in a fear-based

> medical model if I really am okay.

>

> My current endo says the 1.2 cm was over the cutoff for safety. The

> endo who initially referred me for surgery called it clinically

> insignificant and basically blew it off.

>

> I don't want to be stupid. But I don't want to be run around

either.

>

> From what I've read about the preparations for the radioactive

iodine

> treatment, it sounds horrible and I'd rather not put myself through

> going hypothyroid if I don't have to.

>

> I don't do well off Synthroid. The current endo dropped my dose

from

> 1 mg to .5 and I felt horrible. Now I'm on .88 mg and the verdict

is

> not yet in. The thought of going off altogether makes me really

> uncomfortable.

>

> Thanks for reading this. Again, feedback greatly appreciated.

>

> SuzinG

[Guest guest]

Hi, Suzin -

I would go ahead with the completion surgery and RAI treatment.

I think you're lucky that your endo is so adamant about this.

I can tell you so many stories about members who opted against completion

surgery, or sometimes only

against the RAI, and came back with widespread cancer, sometimes soon

after, sometimes many years later

(see 2 examples below). I'm sure there are others who evaded the RAI and

didn't have a recurrence, but

they don't write to us :-)

The two best reasons to go ahead with the surgery and treatment are (1) to

prevent a recurrence, and (2) to

monitor for recurrence.

Thyca is microscopic, and doesn't show up until there are more than

a million cells clumped together; it's very possible that you already

have cancer cells in the other lobe.

Monitoring for recurrence is a lifetime proposition; we can be monitored

for recurrence via blood test only if

we have had a TT and RAI ablation sufficient to reach a thyroglobulin level

of zero (or <2 or undetectable, based

on the lab).

Below are links to some letters from the archives that may be of interest.

BTW - none of us enjoy the process of going off meds, or or ingesting RAI;

some of us have an easier time

than others, but we all make it through, often with less misery than

anticipated.

Also, just so you know, we have had several professional singers on this

list, all, of course, concerned about the

surgery, and they have all emerged just fine.

Good luck -

NYC

TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00; clean scan 3/02;

current TSH ~.06 on .225 levothyroxine

http://groups.yahoo.com/group/Thyca/message/13418 ... questioning RAI

(some reasons to do it)

http://groups.yahoo.com/group/Thyca/message/15542 ... papillary thyca

mutating to anaplastic (Dr. Ain)

http://groups.yahoo.com/group/Thyca/message/15971 ... Dr. on the

odds of no RAI

http://groups.yahoo.com/group/Thyca/message/8947 ... PT, no RAI -

recurrence after 20 years

http://groups.yahoo.com/group/Thyca/message/16484 ... TT, no RAI -

recurrence after 32 years

[Guest guest]

Hi, Suzin -

I would go ahead with the completion surgery and RAI treatment.

I think you're lucky that your endo is so adamant about this.

I can tell you so many stories about members who opted against completion

surgery, or sometimes only

against the RAI, and came back with widespread cancer, sometimes soon

after, sometimes many years later

(see 2 examples below). I'm sure there are others who evaded the RAI and

didn't have a recurrence, but

they don't write to us :-)

The two best reasons to go ahead with the surgery and treatment are (1) to

prevent a recurrence, and (2) to

monitor for recurrence.

Thyca is microscopic, and doesn't show up until there are more than

a million cells clumped together; it's very possible that you already

have cancer cells in the other lobe.

Monitoring for recurrence is a lifetime proposition; we can be monitored

for recurrence via blood test only if

we have had a TT and RAI ablation sufficient to reach a thyroglobulin level

of zero (or <2 or undetectable, based

on the lab).

Below are links to some letters from the archives that may be of interest.

BTW - none of us enjoy the process of going off meds, or or ingesting RAI;

some of us have an easier time

than others, but we all make it through, often with less misery than

anticipated.

Also, just so you know, we have had several professional singers on this

list, all, of course, concerned about the

surgery, and they have all emerged just fine.

Good luck -

NYC

TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00; clean scan 3/02;

current TSH ~.06 on .225 levothyroxine

http://groups.yahoo.com/group/Thyca/message/13418 ... questioning RAI

(some reasons to do it)

http://groups.yahoo.com/group/Thyca/message/15542 ... papillary thyca

mutating to anaplastic (Dr. Ain)

http://groups.yahoo.com/group/Thyca/message/15971 ... Dr. on the

odds of no RAI

http://groups.yahoo.com/group/Thyca/message/8947 ... PT, no RAI -

recurrence after 20 years

http://groups.yahoo.com/group/Thyca/message/16484 ... TT, no RAI -

recurrence after 32 years

[Guest guest]

Hi, Suzin -

I would go ahead with the completion surgery and RAI treatment.

I think you're lucky that your endo is so adamant about this.

I can tell you so many stories about members who opted against completion

surgery, or sometimes only

against the RAI, and came back with widespread cancer, sometimes soon

after, sometimes many years later

(see 2 examples below). I'm sure there are others who evaded the RAI and

didn't have a recurrence, but

they don't write to us :-)

The two best reasons to go ahead with the surgery and treatment are (1) to

prevent a recurrence, and (2) to

monitor for recurrence.

Thyca is microscopic, and doesn't show up until there are more than

a million cells clumped together; it's very possible that you already

have cancer cells in the other lobe.

Monitoring for recurrence is a lifetime proposition; we can be monitored

for recurrence via blood test only if

we have had a TT and RAI ablation sufficient to reach a thyroglobulin level

of zero (or <2 or undetectable, based

on the lab).

Below are links to some letters from the archives that may be of interest.

BTW - none of us enjoy the process of going off meds, or or ingesting RAI;

some of us have an easier time

than others, but we all make it through, often with less misery than

anticipated.

Also, just so you know, we have had several professional singers on this

list, all, of course, concerned about the

surgery, and they have all emerged just fine.

Good luck -

NYC

TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00; clean scan 3/02;

current TSH ~.06 on .225 levothyroxine

http://groups.yahoo.com/group/Thyca/message/13418 ... questioning RAI

(some reasons to do it)

http://groups.yahoo.com/group/Thyca/message/15542 ... papillary thyca

mutating to anaplastic (Dr. Ain)

http://groups.yahoo.com/group/Thyca/message/15971 ... Dr. on the

odds of no RAI

http://groups.yahoo.com/group/Thyca/message/8947 ... PT, no RAI -

recurrence after 20 years

http://groups.yahoo.com/group/Thyca/message/16484 ... TT, no RAI -

recurrence after 32 years

[Guest guest]

Hi Suzin,

I am a singer too - not a professional, but I have sung in good

amateur and semi-professional choirs all my life and I met my husband

while we were both singing at a choir festival, so I can understand

how important singing is for you.

I had a TT 17 years after my initial PT. Opinions were different back

then - in 1965! - and although my tumor was larger than yours and had

already metastasised to the lymph nodes my doctors thought it was safe

to leave the remaining lobe and to " treat " me with suppressive

thyroxine. I am sure they acted in wisdom and in line with the

state of medical knowledge at the time, but they were wrong. At the

time of my total (completion) thyroidectomy 17 years later, although

there were no symptoms, there was a small tumor in the remaining lymph

node, as well as lymph mets. I went on to have ablative RAI and I was

very fortunate that it needed only a single dose, and I have been free

of disease since then...20 years on. Like you I was very concerned

about my voice, but I've also had further neck surgery for an

unrelated reason, putting my voice even more at risk, and after three

operations I can still sing!

It is hard to avoid the fact that there is a risk of voice damage

after second surgeries. Ideally, second surgeries are performed by

surgeons with special experience in reoperative neck surgery, so one

of the first things I would check with your surgeon is what the risk

might be in his hands - can he give you some numbers as to the number

of thyroidectomies he performs each year and the percentage of cases

with permanent voice problems? What are the risks in your particular

case? Is it possible for the surgeon to operate in such a way as to

minimise the risk of voice damage? I have heard that some surgeons

leave a generous amount of thyroid tissue around the recurrent

laryngeal (voicebox) nerves and the parathyroids to reduce the risk

and let the RAI " mop up " the remaining tissue. Is this a possibility

in your case?

As I understand it, the present guidelines recommend a TT and RAI for

all tumors greater than 1 cm. So it is a close call in your case.

But I don't agree that this is a fear-based model. There is a growing

body of knowledge about the risk of long-term recurrence, in some

cases decades after the original occurance, and with an increased risk

if the initial surgery was incomplete. I had a very, very hard time

reaching a decision to go for the completion surgery. After weighing

up the issues, I went into the operating theatre believing that I had

taken the right decision, whatever the outcome, and even at risk of

losing my voice. I hope that you too can reach this stage of

believing in your own decision whatever that may be.

Best wishes and good luck, and please let us know what you decide and

how you get on,

Judith

(British - living in Holland)

dx 1965 pap thyca T4-N1-M0 in left lobe and lymph nodes

pt Sept 1965 London, England

dx2 1982 recurrence in right lobe and cervical lymph nodes

tt Mar 1982 The Netherlands

rai 75 mCi Apr 1982 The Netherlands

clean scan Sept 1982 The Netherlands

200 mcg Thyrax (levothyroxine)

followed on Tg / US (NED as of May 2002)

> Hello.

>

> I am trying to decide on a second thyroidectomy and would appreciate

> feedback from people in the know. Here's the story:

>

> In January I had a partial thyroidectomy to remove a goiter that was

> about the size of a grapefruit. I am a singer and posponed this

> surgery for many years because of the potential risk to my vocal

> chord nerves. But finally felt the time was right and went ahead

> with the surgery. Because I am a singer, when my surgeon got inside

> and saw the situation, he decided to remove only the right side

> because the left looked absolutely perfect. Initially we were all

> thrilled that I'd gotten away with a partial thyroidectomy. Except

> that when the pathology report came back later, it turned out there

> had been a 1.2 cm papillary carcinoma buried deep inside the goiter.

>

> Because of my singing career, my surgeon consulted with 2

> endocrinologists and his mentor who all agreed that I should be

> monitored carefully, but that the odds of a recurrence did not merit

> removing the rest of the gland. So that has been the situation.

>

> Fast forward to now, 9 months later. I just saw the endocrinologist

> who is now adamant that I go back in for a complete thyroidectomy

and

> also radioactive iodine treatment.

>

> When I saw the surgeon a few days later, he concurrred.

>

> When I ask why no one said this back in February, no one really has

a

> good answer.

>

> I am willing to undergo this protocol if there really is a risk of

> recurrence. But I don't want to get caught up in a fear-based

> medical model if I really am okay.

>

> My current endo says the 1.2 cm was over the cutoff for safety. The

> endo who initially referred me for surgery called it clinically

> insignificant and basically blew it off.

>

> I don't want to be stupid. But I don't want to be run around

either.

>

> From what I've read about the preparations for the radioactive

iodine

> treatment, it sounds horrible and I'd rather not put myself through

> going hypothyroid if I don't have to.

>

> I don't do well off Synthroid. The current endo dropped my dose

from

> 1 mg to .5 and I felt horrible. Now I'm on .88 mg and the verdict

is

> not yet in. The thought of going off altogether makes me really

> uncomfortable.

>

> Thanks for reading this. Again, feedback greatly appreciated.

>

> SuzinG