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The first time I had RAI no one told me to do LID either, it seems that some

doctors prefer it and others don't. My radiation oncologist did have me do

strict LID prior to scan in Sept.'01.

Lynn in New York

PT 1/00, TT 3/00, RAI 149 mCi 5/00, Clean Scan 9/27/01!!!

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,

The diet everyone speaks about is the low iodine diet. It is ONLY done

in the last two weeks prior to RAI treatment and scanning. When your

daughter is ready for RAI treatment and goes off her medication we will

all be here to help you understand.

Gail

>

> I post questions etc. for my daughter who is a busy college student.

> We were wondering why so many of you folks are on a special diet? Are we

missing something because she has not been advised to change her diet.

> We haven't seen an endo. Her surgeon took her on as his special project (he

calls her " his baby " ) because she was his youngest ThyCa patient ever, and she

ended up with damaged parathyroids, so he has been treating her hypocalcemia and

monitoring her Synthroid levels. He has been SO GOOD to us--we hate to " leave "

him, but if we are missing out on some important information, perhaps we should

see an endo now.

>

> We welcome your advice.

>

> himom56@y... for

>

> Tara, age 19, 2001 TT pap w/lymph mets, hypoparathyroidism

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She had her radiation in March with no recommendation of a low iodine diet from

the radiation oncologist. Hmmm.

Gail Gundling wrote: ,

The diet everyone speaks about is the low iodine diet. It is ONLY done

in the last two weeks prior to RAI treatment and scanning. When your

daughter is ready for RAI treatment and goes off her medication we will

all be here to help you understand.

Gail

>

> I post questions etc. for my daughter who is a busy college student.

> We were wondering why so many of you folks are on a special diet? Are we

missing something because she has not been advised to change her diet.

> We haven't seen an endo. Her surgeon took her on as his special project (he

calls her " his baby " ) because she was his youngest ThyCa patient ever, and she

ended up with damaged parathyroids, so he has been treating her hypocalcemia and

monitoring her Synthroid levels. He has been SO GOOD to us--we hate to " leave "

him, but if we are missing out on some important information, perhaps we should

see an endo now.

>

> We welcome your advice.

>

> himom56@y... for

>

> Tara, age 19, 2001 TT pap w/lymph mets, hypoparathyroidism

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Theresa,

I never saw an endo either. I was 26 when my surgeon took care of

me too. He is a great guy but his is not an endo. His specialty is

surgery. I advise that you should see an endo. I am seeing one for

the first time in 12 years. I am now 38 and Wednesday will be my

first appointment. I feel that you can see the endo in addition to

the surgeon. Maybe he will figure out why my levels, emotions,

stiffness, etc. are the way they are.

> >

> > I post questions etc. for my daughter who is a busy college

student.

> > We were wondering why so many of you folks are on a special

diet? Are we missing something because she has not been advised to

change her diet.

> > We haven't seen an endo. Her surgeon took her on as his special

project (he calls her " his baby " ) because she was his youngest ThyCa

patient ever, and she ended up with damaged parathyroids, so he has

been treating her hypocalcemia and monitoring her Synthroid levels.

He has been SO GOOD to us--we hate to " leave " him, but if we are

missing out on some important information, perhaps we should see an

endo now.

> >

> > We welcome your advice.

> >

> > himom56@y... for

> >

> > Tara, age 19, 2001 TT pap w/lymph mets, hypoparathyroidism

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,

Thanks for that info. I just got diagnosed with

papillary cancer on Thursday, and have only seen a

surgeon so far. All I know is that he's doing a

lobectomy and possibly removing the whole thyroid,

depending on what he sees, and I don't know what will

happen after that!

Does everyone have to get RAI after surgery?

Does everyone have to take synthroid?

Sorry to be so naive, and thanks for any advice...

Malclif

--- metoothyca@... wrote:

>

>

> Theresa,

>

> I never saw an endo either. I was 26 when my surgeon

> took care of

> me too. He is a great guy but his is not an endo.

> His specialty is

> surgery. I advise that you should see an endo. I am

> seeing one for

> the first time in 12 years. I am now 38 and

> Wednesday will be my

> first appointment. I feel that you can see the endo

> in addition to

> the surgeon. Maybe he will figure out why my

> levels, emotions,

> stiffness, etc. are the way they are.

>

>

>

>

> > >

> > > I post questions etc. for my daughter who is a

> busy college

> student.

> > > We were wondering why so many of you folks are

> on a special

> diet? Are we missing something because she has not

> been advised to

> change her diet.

> > > We haven't seen an endo. Her surgeon took her

> on as his special

> project (he calls her " his baby " ) because she was

> his youngest ThyCa

> patient ever, and she ended up with damaged

> parathyroids, so he has

> been treating her hypocalcemia and monitoring her

> Synthroid levels.

> He has been SO GOOD to us--we hate to " leave " him,

> but if we are

> missing out on some important information, perhaps

> we should see an

> endo now.

> > >

> > > We welcome your advice.

> > >

> > > himom56@y... for

> > >

> > > Tara, age 19, 2001 TT pap w/lymph mets,

> hypoparathyroidism

>

>

__________________________________________________

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At 2:21 PM -0800 10/29/2001, wrote:

>,

>

>Thanks for that info. I just got diagnosed with

>papillary cancer on Thursday, and have only seen a

>surgeon so far. All I know is that he's doing a

>lobectomy and possibly removing the whole thyroid,

>depending on what he sees, and I don't know what will

>happen after that!

>

>Does everyone have to get RAI after surgery?

>Does everyone have to take synthroid?

>

>Sorry to be so naive, and thanks for any advice...

>Malclif

>

Hi Malclif,

If you have a lobectomy, you probably won't get RAI and you may not need

synthroid. The idea with a lobectomy is to leave a thyroid and hopefully

it will work and you won't need any hormone supplement. The RAI is used to

kill thyroid tissue and that would be the opposite of what you are trying

to accomplish with a lobectomy.

I would guess that you've been diagnosed with papillary cancer but there is

a slight chance that you don't actually have cancer. Most likely they're

going to do a " frozen section " (chop up a piece of your thyroid and see if

the slice is malignant or benign) to determine if they're sticking to a

lobectomy or a total thyroidectomy.

Good luck to you and hope it's benign!

Betty

mailto:bettyy@...

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