New & obviously clueless

[Guest guest]

My husband finally went to the Dr. on Oct. 30th about a growth in his neck,

it became noticeable to me when he went on a diet to loose weight. On Nov.

15th he was in surgery having his thyroid removed. Three lobes were

enlarged, 1 was walnut sized, 1 was lemon sized and the last was the size of

a coke can, the last had invaded veins in his neck. Dr. said he was lucky

he had not suffocated. Lab results came back that the large tumor was

cancerous. He is now on calcium and synthroid 125 mg a day. They have done

a total body bone scan and a chest x-ray that came out clear of masses.

They did a brain MRI that we get the results of on Wed. Jan 2nd. The Dr.

has mentioned him having to go on a LID and doing RAI treatment starting in

Jan. Can anyone help? We don't have a clue what we are in for. He is

already snapping my head off every time I turn around because I didn't turn

the right way. We are scared out of our minds and need some info as to what

is happening. My husband is 60 years old and we have had a wonderful

relationship for 27 years. He is retired form the Navy and continues to

work for an marine architect firm. He plays golf as often as he can, at

least once a week. Are there any questions that I need to ask the Dr. on

Wed. that I may not think of not knowing what he is talking about? Any help

would be appreciated. Thank you.

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

Hi ;

Welcome, you've come to a good place for answers and experience.

The LID is the low iodine diet, its followed for 2 weeks before an

RAI (Radioactive iodine). Details of the diet are available at

www.thyca.org under the radiation link, and there is a cookbook of

low iodine recipies as well. Basically the idea is to avoid fish,

dairy, soy, red dye #3, and other high iodine foods in an effort to

deplete the body of iodine so any remaining thyroid cells are avid

for iodine and take up as much of the RAI as possible.

A patient might have an RAI scan ,small dose, first to see where the

uptake is. Then a larger dose of RAI to ablate (kill off) any

remaining thryoid tissue. Sometimes after surgery, a patient will

have the ablative dose without a scan, and a scan after to see where

the uptake is. Then it takes up to 6 months for the RAI to kill off

the thyoid cells so your husband will most likely be scheduled for a

scanning dose in 6 - 12 months.

The other part of preparation for an RAI scan or treatment is going

off the synthetic thyroid hormone. One has to become hypo, with a

TSH of usually greater than 30 to have the treatment. So your

husband will become hypo as a result, be more tired, lethargic,

crabby, and a host of other difficulties. The only good part is once

the treatment is done, he can go back on his synthroid and start to

feel more normal. Typically one has to be off synthroid for 6 weeks

before an RAI.

Ask his doctor for a copy of the LID he has in mind (there are

several versions out there), compare it with the one on

www.thyca.org. Ask him how big a dose of RAI, what are the plans for

isolation during treatment - will your husband be in a hospital

setting or at home right after the dose? Cytomel is often given for

the first 4 weeks off synthroid to help feel a bit more normal as one

slides into " hypo hell " it helps take the edge off the slide, not

everyone uses it, it gives some folks headaches... but ask about it.

Good luck, ask lots of questions, both to his docs and here on the

list and we'll help you to know what to expect.

barb

TT 8/99 RAI 4/00 Clean Scan 12/00

hailing from southern NH

>

> My husband finally went to the Dr. on Oct. 30th about a growth in

his neck,

> it became noticeable to me when he went on a diet to loose weight.

On Nov.

> 15th he was in surgery having his thyroid removed. Three lobes

were

> enlarged, 1 was walnut sized, 1 was lemon sized and the last was

the size of

> a coke can, the last had invaded veins in his neck. Dr. said he

was lucky

> he had not suffocated. Lab results came back that the large tumor

was

> cancerous. He is now on calcium and synthroid 125 mg a day. They

have done

> a total body bone scan and a chest x-ray that came out clear of

masses.

> They did a brain MRI that we get the results of on Wed. Jan 2nd.

The Dr.

> has mentioned him having to go on a LID and doing RAI treatment

starting in

> Jan. Can anyone help? We don't have a clue what we are in for.

He is

> already snapping my head off every time I turn around because I

didn't turn

> the right way. We are scared out of our minds and need some info as

to what

> is happening. My husband is 60 years old and we have had a

wonderful

> relationship for 27 years. He is retired form the Navy and

continues to

> work for an marine architect firm. He plays golf as often as he

can, at

> least once a week. Are there any questions that I need to ask the

Dr. on

> Wed. that I may not think of not knowing what he is talking about?

Any help

> would be appreciated. Thank you.

>

>

> _________________________________________________________________

> Chat with friends online, try MSN Messenger:

http://messenger.msn.com

[Guest guest]

Hi ,

Welcome to Thyca!

Your worries and fears are quite normal when first diagnosed. Cancer

is a scary diagnosis. The good news is that this disease is very

controllable. Many of us have been patients for 30 plus years.

Your information was a bit confusing as you spoke of 3 lobes. The

thyroid only has 2 lobes. Did you mean nodules on the thyroid? Have you

found out what type of thyroid cancer your husband has? That will be

in the pathology report and you need to find that out. It is always

best to ask for a copy of the pathology report for your own files.

Part of your husbands response to you could be based on nerves but it

can also be based on the hormonal changes that are taking place with

the removal of the thyroid. Our emotions are often out of control

until we are regulated. So hang in there and don't take it too

personally. Give him a big hug and tell him it's his thyroid hormone

acting up. I suggest that you buy the Thyroid Source Book by Sara

Rosenthal. It will be a big help in understanding what is happening.

Read the newbie section at http://www.thyca.org where you can find all

the questions to ask the doctor. There is plenty of information there

on the low iodine diet and radioiodine treatment. However, I will post

the LID our thyca doctors have recommended as well. It is only followed

in the last two weeks before scanning.

Ask all the questions you want here....there is always someone online

who can help out and.......take a deep breath!!

Best wishes,

Gail

dx: 1968, TT, pap. & foll. well differentiated, RAI,

rad.neck dissection,lung surgery, hashimoto, high antibody

count, iodine resistant,existing thyca nodules in lungs.

Last surgery 1972

> Three lobes were enlarged, 1 was walnut sized, 1 was lemon sized and the last

was the size of a coke can, the last had invaded veins in his neck. He is

now on calcium and synthroid 125 mg a day. They have done a total body bone

scan and a chest x-ray that came out clear of masses. They did a brain MRI that

we get the results of on Wed. Jan 2nd. The Dr. has mentioned him having to go

on a LID and doing RAI treatment starting in Jan. Can anyone help? We don't

have a clue what we are in for. He is already snapping my head off every time

I turn around because I didn't turn the right way. Are there any questions that

I need to ask the Dr. on Wed. that I may not think of not knowing what he is

talking about? Any help would be appreciated. Thank you.