Re: Newbie seeking answers

[Guest guest]

Welcome to the group !

I'm fairly new here myself.. but have learned a lot from the kind folks

on this list. I recently discovered these guidelines put out by the

American Association of Clinical Endocronologists. I found them easier

to understand than other guidelines I've run across. Hopefully it can

answer a lot of your questions and maybe bring up some questions to ask

your doctors.

Good luck to you...

http://www.aace.com/ and click on the thyroid carcenoma

guidelines...

Anne

.........

diagnosed in 95, follicular cancer

partial thyroidectomy in 95

waiting to find out more about my prognosis, possible TT soon followed

by 100mCi's of RAI

> Greetings All!

> I am 2 weeks post TT. I left the hospital with a prescription for

> Snytroid 125 mg. & an appt with my endo for next week. Unfortunately

> neither the surgeon nor the hospital provided me with any info

> concerning what to expect.

>

> Three days after discharge, we received a phone call from the surgeon

> reporting that papillary ca was found that was " incidental " to the

> multi nodule goiter. What in the world does " incidental " cancer

> mean?? And what does that mean to me??

>

> I've been browsing the web for any and all info concerning papillary

> cancer. Is RAI " routine " in all cases of papillary cancer? Needless

> to say, the " cancer " word has kind of frightened me and also the lack

> of advice on what I can expect next. The surgeon seemed unconcerned

> with the finding of cancer and said " papillary " cancer was the " good

> kind " of cancer. Will my TSH be suppressed? What will that feel like?

>

> I hate feeling sooooooo stupid! Any help will be appreciated.

> Thanks,

>

[Guest guest]

Hi ...

Boy, this stuff can get confusing, can't it?? I had a

similiar diagnosis. The original nodule (diagnosed as

a 2.5 cm follicular carcinoma) was identified in the

final pathology (frozen section was originally read as

benign). They also identified an " incidental " 9 mm

papillary carcinoma. My doctor explained to me it was

found " accidentally " when diagnosing the original

tumor (it was never identified prior to the surgery

via ultrasound, uptake scan, or physical exam).

Therefore, it was " incidental " , or not expected.

Hope that helps....

--- senecawaves@... wrote:

> Greetings All!

> I am 2 weeks post TT. I left the hospital with a

> prescription for

> Snytroid 125 mg. & an appt with my endo for next

> week. Unfortunately

> neither the surgeon nor the hospital provided me

> with any info

> concerning what to expect.

>

> Three days after discharge, we received a phone call

> from the surgeon

> reporting that papillary ca was found that was

> " incidental " to the

> multi nodule goiter. What in the world does

> " incidental " cancer

> mean?? And what does that mean to me??

>

> I've been browsing the web for any and all info

> concerning papillary

> cancer. Is RAI " routine " in all cases of papillary

> cancer? Needless

> to say, the " cancer " word has kind of frightened me

> and also the lack

> of advice on what I can expect next. The surgeon

> seemed unconcerned

> with the finding of cancer and said " papillary "

> cancer was the " good

> kind " of cancer. Will my TSH be suppressed? What

> will that feel like?

>

> I hate feeling sooooooo stupid! Any help will be

> appreciated.

> Thanks,

>

>

>

=====

Christy, 42

Las Vegas, NV

2/26/01 PT; 3/10/01 TT (2.5 cm follicular w/minimal invasion and .9 cm

incidental encapsulated papillary); 3/28/01 145 mCi RAI; .5 Rocaltrol + 1500 mg

calcium daily.

__________________________________________________

[Guest guest]

Hi ...

Boy, this stuff can get confusing, can't it?? I had a

similiar diagnosis. The original nodule (diagnosed as

a 2.5 cm follicular carcinoma) was identified in the

final pathology (frozen section was originally read as

benign). They also identified an " incidental " 9 mm

papillary carcinoma. My doctor explained to me it was

found " accidentally " when diagnosing the original

tumor (it was never identified prior to the surgery

via ultrasound, uptake scan, or physical exam).

Therefore, it was " incidental " , or not expected.

Hope that helps....

--- senecawaves@... wrote:

> Greetings All!

> I am 2 weeks post TT. I left the hospital with a

> prescription for

> Snytroid 125 mg. & an appt with my endo for next

> week. Unfortunately

> neither the surgeon nor the hospital provided me

> with any info

> concerning what to expect.

>

> Three days after discharge, we received a phone call

> from the surgeon

> reporting that papillary ca was found that was

> " incidental " to the

> multi nodule goiter. What in the world does

> " incidental " cancer

> mean?? And what does that mean to me??

>

> I've been browsing the web for any and all info

> concerning papillary

> cancer. Is RAI " routine " in all cases of papillary

> cancer? Needless

> to say, the " cancer " word has kind of frightened me

> and also the lack

> of advice on what I can expect next. The surgeon

> seemed unconcerned

> with the finding of cancer and said " papillary "

> cancer was the " good

> kind " of cancer. Will my TSH be suppressed? What

> will that feel like?

>

> I hate feeling sooooooo stupid! Any help will be

> appreciated.

> Thanks,

>

>

>

=====

Christy, 42

Las Vegas, NV

2/26/01 PT; 3/10/01 TT (2.5 cm follicular w/minimal invasion and .9 cm

incidental encapsulated papillary); 3/28/01 145 mCi RAI; .5 Rocaltrol + 1500 mg

calcium daily.

__________________________________________________

[Guest guest]

Hi ...

Boy, this stuff can get confusing, can't it?? I had a

similiar diagnosis. The original nodule (diagnosed as

a 2.5 cm follicular carcinoma) was identified in the

final pathology (frozen section was originally read as

benign). They also identified an " incidental " 9 mm

papillary carcinoma. My doctor explained to me it was

found " accidentally " when diagnosing the original

tumor (it was never identified prior to the surgery

via ultrasound, uptake scan, or physical exam).

Therefore, it was " incidental " , or not expected.

Hope that helps....

--- senecawaves@... wrote:

> Greetings All!

> I am 2 weeks post TT. I left the hospital with a

> prescription for

> Snytroid 125 mg. & an appt with my endo for next

> week. Unfortunately

> neither the surgeon nor the hospital provided me

> with any info

> concerning what to expect.

>

> Three days after discharge, we received a phone call

> from the surgeon

> reporting that papillary ca was found that was

> " incidental " to the

> multi nodule goiter. What in the world does

> " incidental " cancer

> mean?? And what does that mean to me??

>

> I've been browsing the web for any and all info

> concerning papillary

> cancer. Is RAI " routine " in all cases of papillary

> cancer? Needless

> to say, the " cancer " word has kind of frightened me

> and also the lack

> of advice on what I can expect next. The surgeon

> seemed unconcerned

> with the finding of cancer and said " papillary "

> cancer was the " good

> kind " of cancer. Will my TSH be suppressed? What

> will that feel like?

>

> I hate feeling sooooooo stupid! Any help will be

> appreciated.

> Thanks,

>

>

>

=====

Christy, 42

Las Vegas, NV

2/26/01 PT; 3/10/01 TT (2.5 cm follicular w/minimal invasion and .9 cm

incidental encapsulated papillary); 3/28/01 145 mCi RAI; .5 Rocaltrol + 1500 mg

calcium daily.

__________________________________________________

[Guest guest]

Hi and welcome;

don't feel stupid, its just new territory, and we're all here to help

you along the way of that marvelous (ha) journey called thyca!!!

you've already met our greatest pitfall, the old " best cancer to

have " story - we get used to it, its just the insensitive way that

medical personnel try to let you know that compared to some other

cancers, this is quite survivable and while the treatment is no

picnic, it sure beats some kinds of chemo and such.

Your endo will probably call the shots in the remainder of your

treatment. The need for RAI is dictated by the size of your tumor,

whether it was encapsulated, or if its spread at all, etc. My

surgeon was sure i didn't need RAI, my radiation oncologist wasn't

sure either way, and when i met with my endo, he was convinced it was

a good idea to get rid of any thyroid remanants left behind after

surgery, thereby making sure i was clear of all thyroid tissue,

rendering TG as a useful tool for future monitoring for recurrence.

Getting your TSH suppressed is often an exercise in frustration, it

takes about 6 weeks for any change in synthetic thyroid medication to

level out in your system, in my case it was 4 dose changes till i got

supressed, from aug 99 to jan 00 - almost 6 months - but now i feel

the same as i ever did.. same energy levels , same everything, but

you'll find that its always a case of YMMV, your mileage may vary,

for me, i'm the same, for others, its not quite the same.

barb

Barb Burri

dx pap 7/1/99 TT 8/13/99, RAI 63mci 4/26/00 - CLEAN SCAN 12/15/00 -

.175 synthroid

barburri@... // bburri@... // www.burri.com

hailing from Plaistow NH (42 miles Due North of Boston)

> Greetings All!

> I am 2 weeks post TT. I left the hospital with a prescription for

> Snytroid 125 mg. & an appt with my endo for next week.

Unfortunately

> neither the surgeon nor the hospital provided me with any info

> concerning what to expect.

>

> Three days after discharge, we received a phone call from the

surgeon

> reporting that papillary ca was found that was " incidental " to the

> multi nodule goiter. What in the world does " incidental " cancer

> mean?? And what does that mean to me??

>

> I've been browsing the web for any and all info concerning

papillary

> cancer. Is RAI " routine " in all cases of papillary cancer?

Needless

> to say, the " cancer " word has kind of frightened me and also the

lack

> of advice on what I can expect next. The surgeon seemed

unconcerned

> with the finding of cancer and said " papillary " cancer was

the " good

> kind " of cancer. Will my TSH be suppressed? What will that feel

like?

>

> I hate feeling sooooooo stupid! Any help will be appreciated.

> Thanks,

>

[Guest guest]

Hi and welcome;

don't feel stupid, its just new territory, and we're all here to help

you along the way of that marvelous (ha) journey called thyca!!!

you've already met our greatest pitfall, the old " best cancer to

have " story - we get used to it, its just the insensitive way that

medical personnel try to let you know that compared to some other

cancers, this is quite survivable and while the treatment is no

picnic, it sure beats some kinds of chemo and such.

Your endo will probably call the shots in the remainder of your

treatment. The need for RAI is dictated by the size of your tumor,

whether it was encapsulated, or if its spread at all, etc. My

surgeon was sure i didn't need RAI, my radiation oncologist wasn't

sure either way, and when i met with my endo, he was convinced it was

a good idea to get rid of any thyroid remanants left behind after

surgery, thereby making sure i was clear of all thyroid tissue,

rendering TG as a useful tool for future monitoring for recurrence.

Getting your TSH suppressed is often an exercise in frustration, it

takes about 6 weeks for any change in synthetic thyroid medication to

level out in your system, in my case it was 4 dose changes till i got

supressed, from aug 99 to jan 00 - almost 6 months - but now i feel

the same as i ever did.. same energy levels , same everything, but

you'll find that its always a case of YMMV, your mileage may vary,

for me, i'm the same, for others, its not quite the same.

barb

Barb Burri

dx pap 7/1/99 TT 8/13/99, RAI 63mci 4/26/00 - CLEAN SCAN 12/15/00 -

.175 synthroid

barburri@... // bburri@... // www.burri.com

hailing from Plaistow NH (42 miles Due North of Boston)

> Greetings All!

> I am 2 weeks post TT. I left the hospital with a prescription for

> Snytroid 125 mg. & an appt with my endo for next week.

Unfortunately

> neither the surgeon nor the hospital provided me with any info

> concerning what to expect.

>

> Three days after discharge, we received a phone call from the

surgeon

> reporting that papillary ca was found that was " incidental " to the

> multi nodule goiter. What in the world does " incidental " cancer

> mean?? And what does that mean to me??

>

> I've been browsing the web for any and all info concerning

papillary

> cancer. Is RAI " routine " in all cases of papillary cancer?

Needless

> to say, the " cancer " word has kind of frightened me and also the

lack

> of advice on what I can expect next. The surgeon seemed

unconcerned

> with the finding of cancer and said " papillary " cancer was

the " good

> kind " of cancer. Will my TSH be suppressed? What will that feel

like?

>

> I hate feeling sooooooo stupid! Any help will be appreciated.

> Thanks,

>

[Guest guest]

Hi ,

Welcome to the group!

You have so many valid questions. Please, never feel stupid for

asking them. I have found out that I won't get an answer if I

don't ask. No cancer is 'good' cancer, especially when newly

diagnosed and trying to weigh all of your options. I thought it

was going to be the absolute end when I was first diagnosed.

Your surgeon's use of the word 'incidental' when giving you the

news wasn't in my opinion a wise choice of words. I doubt that

he would use those words if it was his thyroid that had just

been removed and found to have papillary cancer.

These days, it seems common practice to ablate with RAI post TT.

But in 1965, it was not given to me. My surgeon knew upon frozen

section that it was cancer, and had spread to lymph nodes, so

performed a radical TT. Hopefully you will have good

coordination between your surgeon, endo, and nuclear med doc if

that is something you & your endo decide is best for you at this

time.

You asked what it would feel like to have a supressed TSH?

Optimally, it will feel as you did prior to surgery, when you

had your thyoid. A lot depends on how long it takes for you to

become supressed and on the correct dose of Synthroid. It is

good that you are seeing your endo next week.

Best wishes,

from NE Ohio

=====

Irradiation to thymus as infant

3/25/65 tt Pap thyca w/lymph node mets

Hypoparathyroidism 3 days post radical tt

3/25/82 Recurrence in neck & R chest

Tx w/ 176 mCi RAI 131

hx kidney stones

No scan- 5/22/01 after TSH 38.2 & Tg <0.9 & TgAb <2.0

__________________________________________________

[Guest guest]

Hi ,

Welcome to the group!

You have so many valid questions. Please, never feel stupid for

asking them. I have found out that I won't get an answer if I

don't ask. No cancer is 'good' cancer, especially when newly

diagnosed and trying to weigh all of your options. I thought it

was going to be the absolute end when I was first diagnosed.

Your surgeon's use of the word 'incidental' when giving you the

news wasn't in my opinion a wise choice of words. I doubt that

he would use those words if it was his thyroid that had just

been removed and found to have papillary cancer.

These days, it seems common practice to ablate with RAI post TT.

But in 1965, it was not given to me. My surgeon knew upon frozen

section that it was cancer, and had spread to lymph nodes, so

performed a radical TT. Hopefully you will have good

coordination between your surgeon, endo, and nuclear med doc if

that is something you & your endo decide is best for you at this

time.

You asked what it would feel like to have a supressed TSH?

Optimally, it will feel as you did prior to surgery, when you

had your thyoid. A lot depends on how long it takes for you to

become supressed and on the correct dose of Synthroid. It is

good that you are seeing your endo next week.

Best wishes,

from NE Ohio

=====

Irradiation to thymus as infant

3/25/65 tt Pap thyca w/lymph node mets

Hypoparathyroidism 3 days post radical tt

3/25/82 Recurrence in neck & R chest

Tx w/ 176 mCi RAI 131

hx kidney stones

No scan- 5/22/01 after TSH 38.2 & Tg <0.9 & TgAb <2.0

__________________________________________________

[Guest guest]

Hi ,

It seems that we have a lot in common. I had my surgery two weeks

ago (June 7) too - TT and they found papillary. I also left the

hospital with so many questions. Actually, your post prompted me to

write my own. Thanks (smile).

You kind of feel like you are thrown out in to the woods to find your

own way.

What area of the country are you in? I live in land. I'm 38 and

a single parent with two kids (10 - boy, 13 - girl).

You are right, cancer is a very frightening word, and then hearing

that it is the " good " kind of cancer makes it seem minimalized.

The replies you have received have helped me too. Thanks,

Theresa

> Needless

> to say, the " cancer " word has kind of frightened me and also the

> lack of advice on what I can expect next. The surgeon seemed

> unconcerned with the finding of cancer and said " papillary " cancer

> was the " good kind " of cancer. Will my TSH be suppressed? What

> will that feel like?

>

> I hate feeling sooooooo stupid! Any help will be appreciated.

> Thanks,

>

[Guest guest]

Hi ,

This support group is fantastic! I feel so very much better knowing that I'm

not alone!

I am a 54 year old retired grandma from upstate NY who was treated with

radiation therapy as a child for an enlarged thymus gland. I had a partial

thyroidectomy 16 years ago because the right side of the gland was enlarged and

had multiple nodules. It turned out to be benign. My GP at the time never

mentioned that there should be any follow-up or any need for hormone treatment.

Soooooooo for the past 16 years I've lived with lots of symptoms that I thought

were either menopause or just part of the " aging " process. I wonder now if

much of it was because I was an undiagnosed hypo.

I feel so much more knowledgeable thanks to this group. THANKS SO MUCH EVERYONE

! I'm looking forward to meeting with my endo next week. My incision looks

great but I continue to feel weak. Mornings are the absoulte worse. By mid

afternoon I'm feeling stronger. Is there a connection between caffeine and

synthroid?? I usually have 3 cups of coffee first thing in the morning followed

by the snythroid. Or is it more likely that the dosage of snythroid is not

correct for me? This will sound stranbsp..nbsp.but, I feel like I've lost " me " .

I miss the un diagnosedd want her back !!!

Theresa - did they prescribe medication? How do yonbspel?

---------------------------------