Re: New to the group - scared

[Guest guest]

Hi, -

Welcome to the group.

I agree with you that it's scary to have cancer diagnosed almost

accidentally, but I think many of us had similarly serendipitous

discoveries. Mine was discovered in a CT scan for an unrelated pain in

the side of my neck.

You don't say where you live, but in fact, thyroid cancer is pretty rare

(~1% of all cancers), and a lot of doctors, even excellent

endocrinologists, just don't have much experience with it. For this

reason, it's particularly important for us to educate ourselves on our

cancer and its protocols, to stay on top of everything, and to be

vigilantly monitored for recurrence for the rest of our lives.

Your comments about percentages address that famous and dreaded line we all

hear sooner or later, about having The Good Cancer. You're right that

such talk is supposed to be comforting, and I suppose it is when compared

to " the bad cancer " or survival rates of 10%. Unfortunately, the fact

that there are worse diseases doesn't make hearing about ours become good

news ( " Congratulations! You have the GOOD cancer! " ).

It's certainly fine to vent your fears; that's one reason why we're all

here. But in exchange, you have to promise to read OUR vents :-)

Being hypothyroid before a scan and treatment is, for most people, the

worst part of the entire experience. For many of us during that time,

naps are a new hobby, and brain fog a new companion. Try to remember that

it WILL get better. It'll just take some time. Also, with your hormones

so unbalanced, emotional turmoil (read: depression) is not uncommon.

I've attached below links to some letters from the archives, that may give

you some idea of what you're headed toward. Also, check out the LID (low

iodine diet) links.

good luck, and feel free to keep venting & /or asking questions -

NYC

http://groups.yahoo.com/group/Thyca/message/21242 ... index to LID recipes

http://groups.yahoo.com/group/Thyca/message/19732 ... thyca record keeping

To access these letters, go to ..........

http://groups.yahoo.com/group/Thyca/messages

and enter the message number into the small box marked " msg # "

(or enter ìhttp://groups.yahoo.com/group/Thyca/message/xxxxî

in the URL, substituting the message number for the xxís).

21248 .. thyca abbreviations commonly used on this listserv

21097 .. asking for help

HYPO:

5349 ..... what to expect while going hypo for RAI scan

(member poses the question; follow the long chain of responses)

7654 ..... cautionary letters about driving while hypo from Dr. Ain

4621 ..... Nick's personal experiences in the dangers of hypo driving

16284 ..... My LID/Hypo/RAi experiences ()

18322 ..... hypo triggers (Marti's detailed diary of what aggravated

or alleviated hypo symptoms)

11671 ..... hypo symptoms (brief list of members' complaints,

and links to other sites)

12569 ..... help for hypo hair (collection of members' complaints,

solutions and suggestions)

18386 ..... hypo insomnia - some solutions from list members

Merrill wrote:

> I'm new to this message group (if that's what you call this), so I'll

> give you a history of my illness up front ? this message is probably

> going to be way too long, but if I don't tell my story my concerns

> wont make much sense. [... snip ...]

>

> So, I guess I'm writing all this because I'm scared. My faith in

> doctors isn't at an all time high right now. Doctors like to talk a

> lot about percentages, but in reality percentages have more to do

> with how often the doctor has to deal with something than how

> applicable it is to a particular patient. Even after they found the

> large mass in my thyroid, I was told that there was a very low

> percentage chance I had cancer. Well, that percentage chance doesn't

> mean anything to me, because I do have cancer, so for me it was

> 100%. They tell me there's a high percentage rate of cure and a low

> mortality rate for this type of cancer, which I guess is supposed to

> be comforting, but again, that's how often the doctor has to deal

> with it, not necessarily how applicable it is to me as an individual.

>

> I also have to keep wondering, what else could be going on inside my

> body that I don't know about? Do I have some other kind of cancer

> somewhere else, and I just haven't been lucky enough to find it.

> Does having one kind of cancer make me predisposed to having another

> kind of cancer? I mention this kind of thing to doctors and they

> talk about percentages and treat me like I'm a hypochondriac, but

> then again, I'm sure that's what the endocrinologist thought of me

> when he sent me to the surgeon.

>

> I don't know, I guess I'm not really asking any questions of anybody,

> but this is supposed to be a support group, so I'm venting my fears

> and frustrations. Hope that's ok. I'm also dreading the next

> month. My body hasn't been responding too well to the thyroid being

> gone, even with the Cytomel, so I'm pretty sure I'm going to be

> completely exhausted for the next month. I'm already trying not to

> go nuts being cooped up just recovering from the two surgeriesÖ

>

>

[Guest guest]

Hi, -

Welcome to the group.

I agree with you that it's scary to have cancer diagnosed almost

accidentally, but I think many of us had similarly serendipitous

discoveries. Mine was discovered in a CT scan for an unrelated pain in

the side of my neck.

You don't say where you live, but in fact, thyroid cancer is pretty rare

(~1% of all cancers), and a lot of doctors, even excellent

endocrinologists, just don't have much experience with it. For this

reason, it's particularly important for us to educate ourselves on our

cancer and its protocols, to stay on top of everything, and to be

vigilantly monitored for recurrence for the rest of our lives.

Your comments about percentages address that famous and dreaded line we all

hear sooner or later, about having The Good Cancer. You're right that

such talk is supposed to be comforting, and I suppose it is when compared

to " the bad cancer " or survival rates of 10%. Unfortunately, the fact

that there are worse diseases doesn't make hearing about ours become good

news ( " Congratulations! You have the GOOD cancer! " ).

It's certainly fine to vent your fears; that's one reason why we're all

here. But in exchange, you have to promise to read OUR vents :-)

Being hypothyroid before a scan and treatment is, for most people, the

worst part of the entire experience. For many of us during that time,

naps are a new hobby, and brain fog a new companion. Try to remember that

it WILL get better. It'll just take some time. Also, with your hormones

so unbalanced, emotional turmoil (read: depression) is not uncommon.

I've attached below links to some letters from the archives, that may give

you some idea of what you're headed toward. Also, check out the LID (low

iodine diet) links.

good luck, and feel free to keep venting & /or asking questions -

NYC

http://groups.yahoo.com/group/Thyca/message/21242 ... index to LID recipes

http://groups.yahoo.com/group/Thyca/message/19732 ... thyca record keeping

To access these letters, go to ..........

http://groups.yahoo.com/group/Thyca/messages

and enter the message number into the small box marked " msg # "

(or enter ìhttp://groups.yahoo.com/group/Thyca/message/xxxxî

in the URL, substituting the message number for the xxís).

21248 .. thyca abbreviations commonly used on this listserv

21097 .. asking for help

HYPO:

5349 ..... what to expect while going hypo for RAI scan

(member poses the question; follow the long chain of responses)

7654 ..... cautionary letters about driving while hypo from Dr. Ain

4621 ..... Nick's personal experiences in the dangers of hypo driving

16284 ..... My LID/Hypo/RAi experiences ()

18322 ..... hypo triggers (Marti's detailed diary of what aggravated

or alleviated hypo symptoms)

11671 ..... hypo symptoms (brief list of members' complaints,

and links to other sites)

12569 ..... help for hypo hair (collection of members' complaints,

solutions and suggestions)

18386 ..... hypo insomnia - some solutions from list members

Merrill wrote:

> I'm new to this message group (if that's what you call this), so I'll

> give you a history of my illness up front ? this message is probably

> going to be way too long, but if I don't tell my story my concerns

> wont make much sense. [... snip ...]

>

> So, I guess I'm writing all this because I'm scared. My faith in

> doctors isn't at an all time high right now. Doctors like to talk a

> lot about percentages, but in reality percentages have more to do

> with how often the doctor has to deal with something than how

> applicable it is to a particular patient. Even after they found the

> large mass in my thyroid, I was told that there was a very low

> percentage chance I had cancer. Well, that percentage chance doesn't

> mean anything to me, because I do have cancer, so for me it was

> 100%. They tell me there's a high percentage rate of cure and a low

> mortality rate for this type of cancer, which I guess is supposed to

> be comforting, but again, that's how often the doctor has to deal

> with it, not necessarily how applicable it is to me as an individual.

>

> I also have to keep wondering, what else could be going on inside my

> body that I don't know about? Do I have some other kind of cancer

> somewhere else, and I just haven't been lucky enough to find it.

> Does having one kind of cancer make me predisposed to having another

> kind of cancer? I mention this kind of thing to doctors and they

> talk about percentages and treat me like I'm a hypochondriac, but

> then again, I'm sure that's what the endocrinologist thought of me

> when he sent me to the surgeon.

>

> I don't know, I guess I'm not really asking any questions of anybody,

> but this is supposed to be a support group, so I'm venting my fears

> and frustrations. Hope that's ok. I'm also dreading the next

> month. My body hasn't been responding too well to the thyroid being

> gone, even with the Cytomel, so I'm pretty sure I'm going to be

> completely exhausted for the next month. I'm already trying not to

> go nuts being cooped up just recovering from the two surgeriesÖ

>

>

[Guest guest]

Hi, -

Welcome to the group.

I agree with you that it's scary to have cancer diagnosed almost

accidentally, but I think many of us had similarly serendipitous

discoveries. Mine was discovered in a CT scan for an unrelated pain in

the side of my neck.

You don't say where you live, but in fact, thyroid cancer is pretty rare

(~1% of all cancers), and a lot of doctors, even excellent

endocrinologists, just don't have much experience with it. For this

reason, it's particularly important for us to educate ourselves on our

cancer and its protocols, to stay on top of everything, and to be

vigilantly monitored for recurrence for the rest of our lives.

Your comments about percentages address that famous and dreaded line we all

hear sooner or later, about having The Good Cancer. You're right that

such talk is supposed to be comforting, and I suppose it is when compared

to " the bad cancer " or survival rates of 10%. Unfortunately, the fact

that there are worse diseases doesn't make hearing about ours become good

news ( " Congratulations! You have the GOOD cancer! " ).

It's certainly fine to vent your fears; that's one reason why we're all

here. But in exchange, you have to promise to read OUR vents :-)

Being hypothyroid before a scan and treatment is, for most people, the

worst part of the entire experience. For many of us during that time,

naps are a new hobby, and brain fog a new companion. Try to remember that

it WILL get better. It'll just take some time. Also, with your hormones

so unbalanced, emotional turmoil (read: depression) is not uncommon.

I've attached below links to some letters from the archives, that may give

you some idea of what you're headed toward. Also, check out the LID (low

iodine diet) links.

good luck, and feel free to keep venting & /or asking questions -

NYC

http://groups.yahoo.com/group/Thyca/message/21242 ... index to LID recipes

http://groups.yahoo.com/group/Thyca/message/19732 ... thyca record keeping

To access these letters, go to ..........

http://groups.yahoo.com/group/Thyca/messages

and enter the message number into the small box marked " msg # "

(or enter ìhttp://groups.yahoo.com/group/Thyca/message/xxxxî

in the URL, substituting the message number for the xxís).

21248 .. thyca abbreviations commonly used on this listserv

21097 .. asking for help

HYPO:

5349 ..... what to expect while going hypo for RAI scan

(member poses the question; follow the long chain of responses)

7654 ..... cautionary letters about driving while hypo from Dr. Ain

4621 ..... Nick's personal experiences in the dangers of hypo driving

16284 ..... My LID/Hypo/RAi experiences ()

18322 ..... hypo triggers (Marti's detailed diary of what aggravated

or alleviated hypo symptoms)

11671 ..... hypo symptoms (brief list of members' complaints,

and links to other sites)

12569 ..... help for hypo hair (collection of members' complaints,

solutions and suggestions)

18386 ..... hypo insomnia - some solutions from list members

Merrill wrote:

> I'm new to this message group (if that's what you call this), so I'll

> give you a history of my illness up front ? this message is probably

> going to be way too long, but if I don't tell my story my concerns

> wont make much sense. [... snip ...]

>

> So, I guess I'm writing all this because I'm scared. My faith in

> doctors isn't at an all time high right now. Doctors like to talk a

> lot about percentages, but in reality percentages have more to do

> with how often the doctor has to deal with something than how

> applicable it is to a particular patient. Even after they found the

> large mass in my thyroid, I was told that there was a very low

> percentage chance I had cancer. Well, that percentage chance doesn't

> mean anything to me, because I do have cancer, so for me it was

> 100%. They tell me there's a high percentage rate of cure and a low

> mortality rate for this type of cancer, which I guess is supposed to

> be comforting, but again, that's how often the doctor has to deal

> with it, not necessarily how applicable it is to me as an individual.

>

> I also have to keep wondering, what else could be going on inside my

> body that I don't know about? Do I have some other kind of cancer

> somewhere else, and I just haven't been lucky enough to find it.

> Does having one kind of cancer make me predisposed to having another

> kind of cancer? I mention this kind of thing to doctors and they

> talk about percentages and treat me like I'm a hypochondriac, but

> then again, I'm sure that's what the endocrinologist thought of me

> when he sent me to the surgeon.

>

> I don't know, I guess I'm not really asking any questions of anybody,

> but this is supposed to be a support group, so I'm venting my fears

> and frustrations. Hope that's ok. I'm also dreading the next

> month. My body hasn't been responding too well to the thyroid being

> gone, even with the Cytomel, so I'm pretty sure I'm going to be

> completely exhausted for the next month. I'm already trying not to

> go nuts being cooped up just recovering from the two surgeriesÖ

>

>

[Guest guest]

Hi, -

Welcome to the group that no one wants to be part of :-).

> The bottom line is, if I hadn't gotten pleurisy, if I hadn't had

> such a large neck, if I hadn't asked the ultrasound technicians

> about the size of the nodes, if I hadn't decided to not just take

> the advice of the endocrinologist, and if I hadn't gone to a surgeon

> with a different opinion, I would still have this cancer growing

> inside of me, and I wouldn't even know it was there.

As said, many of us had a " chance " finding of thyca. I had a

horrendous sore throat, and swelling probably caused the nodule that

had likely been there for years (along with the thyca) to get in an

uncomfortable position, so it felt like food was getting stuck when I

was swallowing. If it hadn't been for that illness, I'd probably be

sitting here with my thyroid right now, NOT writing this note.

> They tell me there's a high percentage rate of cure and a low

> mortality rate for this type of cancer, which I guess is supposed to

> be comforting, but again, that's how often the doctor has to deal

> with it, not necessarily how applicable it is to me as an

> individual.

The doctors are indeed correct that thyca is generally treatable, and

most of us will die of something else (hopefully many many years from

now). But, unfortunately, NO one can predict what will happen to any

of us.

Expect the best (that you will not have any recurrance) and do what

needs to be done for the rest of your life: getting the RAI, being

dilligent in followup - getting scans and blood tests as needed.

Gaining knowledge about your situation - what all the tests mean, what

the treatment and followup SHOULD be - helps give you some feeling of

control with this cancer that is totally out of our control. There is

a wealth of information out there, and this group is one of the best

sources of info I've found. 's pointed you to a few of the

archives she's put together, which are great resources. We are

fortunate to have experts in thyca and radiation who monitor and post

to this group, as well as the combined experiences of all the members.

>

> I also have to keep wondering, what else could be going on inside my

> body that I don't know about? Do I have some other kind of cancer

> somewhere else, and I just haven't been lucky enough to find it.

> Does having one kind of cancer make me predisposed to having another

> kind of cancer?

We all understand your fears. Once you have had cancer, it is

perfectly normal to feel that if your body has betrayed you before, it

can again. The percentage thing doesn't help this, cause you feel..If

95% of thyroid nodules are benign, and MINE isn't, where else am I in

that lousy 5%?

> but this is supposed to be a support group, so I'm venting my fears

> and frustrations. Hope that's ok.

Yep, it's ok :-)

> I'm also dreading the next

> month. My body hasn't been responding too well to the thyroid being

> gone, even with the Cytomel, so I'm pretty sure I'm going to be

> completely exhausted for the next month. I'm already trying not to

> go nuts being cooped up just recovering from the two surgeries…

>

>

I had a hysterectomy and a TT within 5 weeks of one another, so I

understand the frustration and cooped up feeling, and maybe the

wondering if you'll ever feel normal again.

Take it one step at a time, and go easy on yourself. You probably

WILL be tired, but you may just level out and stay feeling as you are

now. Try to do some exercise - even just walking a bit - each day,

take naps, and realize that " this too shall pass " . Ask for help from

friends or relatives if you need it. And we'll be here for you.

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

[Guest guest]

Hi, -

Welcome to the group that no one wants to be part of :-).

> The bottom line is, if I hadn't gotten pleurisy, if I hadn't had

> such a large neck, if I hadn't asked the ultrasound technicians

> about the size of the nodes, if I hadn't decided to not just take

> the advice of the endocrinologist, and if I hadn't gone to a surgeon

> with a different opinion, I would still have this cancer growing

> inside of me, and I wouldn't even know it was there.

As said, many of us had a " chance " finding of thyca. I had a

horrendous sore throat, and swelling probably caused the nodule that

had likely been there for years (along with the thyca) to get in an

uncomfortable position, so it felt like food was getting stuck when I

was swallowing. If it hadn't been for that illness, I'd probably be

sitting here with my thyroid right now, NOT writing this note.

> They tell me there's a high percentage rate of cure and a low

> mortality rate for this type of cancer, which I guess is supposed to

> be comforting, but again, that's how often the doctor has to deal

> with it, not necessarily how applicable it is to me as an

> individual.

The doctors are indeed correct that thyca is generally treatable, and

most of us will die of something else (hopefully many many years from

now). But, unfortunately, NO one can predict what will happen to any

of us.

Expect the best (that you will not have any recurrance) and do what

needs to be done for the rest of your life: getting the RAI, being

dilligent in followup - getting scans and blood tests as needed.

Gaining knowledge about your situation - what all the tests mean, what

the treatment and followup SHOULD be - helps give you some feeling of

control with this cancer that is totally out of our control. There is

a wealth of information out there, and this group is one of the best

sources of info I've found. 's pointed you to a few of the

archives she's put together, which are great resources. We are

fortunate to have experts in thyca and radiation who monitor and post

to this group, as well as the combined experiences of all the members.

>

> I also have to keep wondering, what else could be going on inside my

> body that I don't know about? Do I have some other kind of cancer

> somewhere else, and I just haven't been lucky enough to find it.

> Does having one kind of cancer make me predisposed to having another

> kind of cancer?

We all understand your fears. Once you have had cancer, it is

perfectly normal to feel that if your body has betrayed you before, it

can again. The percentage thing doesn't help this, cause you feel..If

95% of thyroid nodules are benign, and MINE isn't, where else am I in

that lousy 5%?

> but this is supposed to be a support group, so I'm venting my fears

> and frustrations. Hope that's ok.

Yep, it's ok :-)

> I'm also dreading the next

> month. My body hasn't been responding too well to the thyroid being

> gone, even with the Cytomel, so I'm pretty sure I'm going to be

> completely exhausted for the next month. I'm already trying not to

> go nuts being cooped up just recovering from the two surgeries…

>

>

I had a hysterectomy and a TT within 5 weeks of one another, so I

understand the frustration and cooped up feeling, and maybe the

wondering if you'll ever feel normal again.

Take it one step at a time, and go easy on yourself. You probably

WILL be tired, but you may just level out and stay feeling as you are

now. Try to do some exercise - even just walking a bit - each day,

take naps, and realize that " this too shall pass " . Ask for help from

friends or relatives if you need it. And we'll be here for you.

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

[Guest guest]

Hi, -

Welcome to the group that no one wants to be part of :-).

> The bottom line is, if I hadn't gotten pleurisy, if I hadn't had

> such a large neck, if I hadn't asked the ultrasound technicians

> about the size of the nodes, if I hadn't decided to not just take

> the advice of the endocrinologist, and if I hadn't gone to a surgeon

> with a different opinion, I would still have this cancer growing

> inside of me, and I wouldn't even know it was there.

As said, many of us had a " chance " finding of thyca. I had a

horrendous sore throat, and swelling probably caused the nodule that

had likely been there for years (along with the thyca) to get in an

uncomfortable position, so it felt like food was getting stuck when I

was swallowing. If it hadn't been for that illness, I'd probably be

sitting here with my thyroid right now, NOT writing this note.

> They tell me there's a high percentage rate of cure and a low

> mortality rate for this type of cancer, which I guess is supposed to

> be comforting, but again, that's how often the doctor has to deal

> with it, not necessarily how applicable it is to me as an

> individual.

The doctors are indeed correct that thyca is generally treatable, and

most of us will die of something else (hopefully many many years from

now). But, unfortunately, NO one can predict what will happen to any

of us.

Expect the best (that you will not have any recurrance) and do what

needs to be done for the rest of your life: getting the RAI, being

dilligent in followup - getting scans and blood tests as needed.

Gaining knowledge about your situation - what all the tests mean, what

the treatment and followup SHOULD be - helps give you some feeling of

control with this cancer that is totally out of our control. There is

a wealth of information out there, and this group is one of the best

sources of info I've found. 's pointed you to a few of the

archives she's put together, which are great resources. We are

fortunate to have experts in thyca and radiation who monitor and post

to this group, as well as the combined experiences of all the members.

>

> I also have to keep wondering, what else could be going on inside my

> body that I don't know about? Do I have some other kind of cancer

> somewhere else, and I just haven't been lucky enough to find it.

> Does having one kind of cancer make me predisposed to having another

> kind of cancer?

We all understand your fears. Once you have had cancer, it is

perfectly normal to feel that if your body has betrayed you before, it

can again. The percentage thing doesn't help this, cause you feel..If

95% of thyroid nodules are benign, and MINE isn't, where else am I in

that lousy 5%?

> but this is supposed to be a support group, so I'm venting my fears

> and frustrations. Hope that's ok.

Yep, it's ok :-)

> I'm also dreading the next

> month. My body hasn't been responding too well to the thyroid being

> gone, even with the Cytomel, so I'm pretty sure I'm going to be

> completely exhausted for the next month. I'm already trying not to

> go nuts being cooped up just recovering from the two surgeries…

>

>

I had a hysterectomy and a TT within 5 weeks of one another, so I

understand the frustration and cooped up feeling, and maybe the

wondering if you'll ever feel normal again.

Take it one step at a time, and go easy on yourself. You probably

WILL be tired, but you may just level out and stay feeling as you are

now. Try to do some exercise - even just walking a bit - each day,

take naps, and realize that " this too shall pass " . Ask for help from

friends or relatives if you need it. And we'll be here for you.

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

[Guest guest]

Hi ;

Welcome to a great group for support and information.. sure its a

group no one ever wants to have to join.. but you've come to a good

place.. i'll interweave my comments in your message....

> My doctor set up an ultrasound of the thyroid, and the ultrasound

> showed a large node in the right half of my thyroid and several

> smaller nodes in the left half. Because I'm a rather large guy

with

> a thick neck, I never even noticed it was there.

so sometimes pleurisy is a good thing.. at least you found this

> I had the right half of my thyroid removed, which turned out to be

> huge – 7 to 8 inches in diameter and 3+ inches thick. Even the

> surgeon was surprised at how large it was. A little over a week

> later I went in to see the surgeon for follow-up, and he informs me

> that the pathology found follicular papillary carcinoma, a 1.1 cm

> tumor on the edge of the large node that was originally deemed

> benign. On August 19th, I had the left half of my thyroid removed

> (which was also enlarged, but not nearly so large as the right half

> had been), which contained two more cancerous nodes, 0.7 cm and 0.4

> cm in size.

compared to the size of the thyroid.. you are fortunate to have such

small cancerous nodes!

> So, I guess I'm writing all this because I'm scared.

> I also have to keep wondering, what else could be going on inside

my

> body that I don't know about? Do I have some other kind of cancer

> somewhere else, and I just haven't been lucky enough to find it.

> Does having one kind of cancer make me predisposed to having

another

> kind of cancer? I mention this kind of thing to doctors and they

> talk about percentages and treat me like I'm a hypochondriac, but

> then again, I'm sure that's what the endocrinologist thought of me

> when he sent me to the surgeon.

there are potentially a lot of things that could be going on.. but

the likelyhood is that there aren't. I know how you must feel, I

come from a " cancer family " everyone related to me is dead of

cancer.. but that means that sure, i might be a little more prone to

it, but by careful healthcare I can insure that if I do have some

other cancer, I can catch it early (which none of my relatives did)

It isn't necessarily true that because you have thyroid cancer you

are more likely to have another kind.. Environment, health factors,

genetics are also likely to play a role in that..

>

> I don't know, I guess I'm not really asking any questions of

anybody,

> but this is supposed to be a support group, so I'm venting my fears

> and frustrations. Hope that's ok.

Of course its ok!!! it is a scary diagnosis to be told you have

cancer, and then get told this is easy, a good kind to have. Hey,

its still cancer and for most folks it scares the daylights out of

us. The facts and statistics support that even with thyroid cancer,

its incredibly curable.. very survivable.. its not the wasting away,

losing all your hair, turning into skin and bones kind of cancer..

but its still very real, very scary and worthy of support.. and

you've come to a great place for such support.

I'm also dreading the next

> month. My body hasn't been responding too well to the thyroid

being

> gone, even with the Cytomel, so I'm pretty sure I'm going to be

> completely exhausted for the next month. I'm already trying not to

> go nuts being cooped up just recovering from the two surgeries…

No one really responds great to the thyroid meds being gone.. Cytomel

wears off quickly.. and you will be exhausted for the next month.

But know that will happen, and remember ITS TEMPORARY.. once you get

RAI behind you, and onto some long term thyroid meds, it does get

better, it really does (and i can see you saying " but I've read this

list and all i read are problems) remember there are about 10,000

people in the US who get thyroid cancer every year, there are 700 of

us on this list, and about 100 that post actively.. The people who

have no problems, get on with their lives and dont hang around this

list.. so don't add to your worries by what you read here...

You will also find a lot of hope and encouragement from the folks on

this list. Hang in there, it does get better. Soon you will be

feeling much more normal, and I found, at least for me, as time

passes it gets easier and easier to deal with this..

good luck

barb

tt 8/99 RAI 4/00 Clean Scans 12/00, 5/02

[Guest guest]

Hi ;

Welcome to a great group for support and information.. sure its a

group no one ever wants to have to join.. but you've come to a good

place.. i'll interweave my comments in your message....

> My doctor set up an ultrasound of the thyroid, and the ultrasound

> showed a large node in the right half of my thyroid and several

> smaller nodes in the left half. Because I'm a rather large guy

with

> a thick neck, I never even noticed it was there.

so sometimes pleurisy is a good thing.. at least you found this

> I had the right half of my thyroid removed, which turned out to be

> huge – 7 to 8 inches in diameter and 3+ inches thick. Even the

> surgeon was surprised at how large it was. A little over a week

> later I went in to see the surgeon for follow-up, and he informs me

> that the pathology found follicular papillary carcinoma, a 1.1 cm

> tumor on the edge of the large node that was originally deemed

> benign. On August 19th, I had the left half of my thyroid removed

> (which was also enlarged, but not nearly so large as the right half

> had been), which contained two more cancerous nodes, 0.7 cm and 0.4

> cm in size.

compared to the size of the thyroid.. you are fortunate to have such

small cancerous nodes!

> So, I guess I'm writing all this because I'm scared.

> I also have to keep wondering, what else could be going on inside

my

> body that I don't know about? Do I have some other kind of cancer

> somewhere else, and I just haven't been lucky enough to find it.

> Does having one kind of cancer make me predisposed to having

another

> kind of cancer? I mention this kind of thing to doctors and they

> talk about percentages and treat me like I'm a hypochondriac, but

> then again, I'm sure that's what the endocrinologist thought of me

> when he sent me to the surgeon.

there are potentially a lot of things that could be going on.. but

the likelyhood is that there aren't. I know how you must feel, I

come from a " cancer family " everyone related to me is dead of

cancer.. but that means that sure, i might be a little more prone to

it, but by careful healthcare I can insure that if I do have some

other cancer, I can catch it early (which none of my relatives did)

It isn't necessarily true that because you have thyroid cancer you

are more likely to have another kind.. Environment, health factors,

genetics are also likely to play a role in that..

>

> I don't know, I guess I'm not really asking any questions of

anybody,

> but this is supposed to be a support group, so I'm venting my fears

> and frustrations. Hope that's ok.

Of course its ok!!! it is a scary diagnosis to be told you have

cancer, and then get told this is easy, a good kind to have. Hey,

its still cancer and for most folks it scares the daylights out of

us. The facts and statistics support that even with thyroid cancer,

its incredibly curable.. very survivable.. its not the wasting away,

losing all your hair, turning into skin and bones kind of cancer..

but its still very real, very scary and worthy of support.. and

you've come to a great place for such support.

I'm also dreading the next

> month. My body hasn't been responding too well to the thyroid

being

> gone, even with the Cytomel, so I'm pretty sure I'm going to be

> completely exhausted for the next month. I'm already trying not to

> go nuts being cooped up just recovering from the two surgeries…

No one really responds great to the thyroid meds being gone.. Cytomel

wears off quickly.. and you will be exhausted for the next month.

But know that will happen, and remember ITS TEMPORARY.. once you get

RAI behind you, and onto some long term thyroid meds, it does get

better, it really does (and i can see you saying " but I've read this

list and all i read are problems) remember there are about 10,000

people in the US who get thyroid cancer every year, there are 700 of

us on this list, and about 100 that post actively.. The people who

have no problems, get on with their lives and dont hang around this

list.. so don't add to your worries by what you read here...

You will also find a lot of hope and encouragement from the folks on

this list. Hang in there, it does get better. Soon you will be

feeling much more normal, and I found, at least for me, as time

passes it gets easier and easier to deal with this..

good luck

barb

tt 8/99 RAI 4/00 Clean Scans 12/00, 5/02

[Guest guest]

,

I am glad that you persisted and got that second opinion. We all have to be

our own advocates with our health. When I had my fine needle biopsies they

were suspicious enough that the endocrinologist wanted to get the whole

thyroid out. It wasn't until I had the TT that we got the definitive cancer

diagnosis. Unfortunately, needle biopsies can lead to false negatives I was

told. Better to just get the darn thing out.

Good luck with the ablation treatment in a few weeks. Be sure to check out

the great L.I.D. recipes on this list. Hang in there and keep in touch. The

next few weeks will be some of your hardest, but you can make it! Check out

some of the hypo humor in the archives-that will make you smile : - )

Abrams

40 yr.old female, Warrenton, VA

dx pap/fol thyca 12/92, 1.7 cm nodule

cap. invas. into skel. muscle

TT 1/93, 2 ablations, RAI- over 300 mCi

PET,US, X-ray, MRI, RAI & Thyrog. scans-neg.

Current med-Synthroid 125 mcg, Tg 5.9

[Guest guest]

((()))

I can definitely relate to your story. Mine is much the same. I

woke up one morning in May looking as if I had swallowed a golf

ball. Later during that day, I went to the Dr as it had started

affecting my breathing. The next day an FNA was performed and the

fluid sent to pathology. Since there was such a low % that is was

cancer & no family history of cancer, I was really not concerned

about it. When the ENT surgeon called me with the path results, he

said it was cancer and the world as I knew it has not been the same

since. I found this site almost immediately. The support I

received here has supported me and even carried me a time or two. 3

weeks after the surgery I had an appt with the oncologist for a

BENIGN tumor they removed along with my appendix 2 1/2 yrs ago.

(I've been getting annual CT scans just to make sure there was no

recurrence or anything else.) I wanted to ask her about chances for

other cancers showing up elsewhere, what I should look for, etc...

She walked into the room and stated " I don't know what to do with

you - you've had 2 of the rarest cancers there are. " I did not know

what or who to believe. I knew (mainly from this site) that the

thyca treatment I was receiving was as it should be, but lost all

faith in my medical providers. Rather than getting a 2nd opinion at

the same facility, I opted to pay out of pocket for one at the

cancer center here. The Dr (ENT) looked through my records and said

that the oncologist had mis-spoke - the appendix tumor was not

cancer. (I also had a problem with my GP last year when he told me

that my reactions to the med he put me on for MVP was impossible &

gave me prozac - I stopped taking the med and had not had a

palpatation instance until last night.) I am changing medical plans

in January as a result of all of this. The only way I have found to

deal with this is to empower myself with knowledge. Doctors are not

omnipotent beings. No one knows my body better than me. It's my

job to make sure that the doctors do their job right. Being

persistant has not been my strong suit - until now that is...

Deb

TT 6/20/02

RAI 9/30/02