Re: No Big Deal -- My Story

[Guest guest]

Hi Jan,

Hang in there! When I was going through treatment, I swore that they were

making things up as they went along. No one would give me information until

it was time to proceed. For example, no mention of RAI until I woke up from

surgery " By the way, you will be getting RAI. " From the experience, I have

learned to be a good consumer of medicine. I interview docs, and if I am

unhappy with the way that I am treated, I move on to another one. I tell docs

up front what I expect, and if they don't think they can provide this

service, I move one. Anyway, my point is that it's important to be in charge

of your treatment. The medical community is there to work FOR YOU!

Wishing you the best,

Jim

[Guest guest]

Oh, Jan, I'm so sorry. Your story could be mine. I went in for a

bunch of sore throats in 94 and an ultrasound diagnosis

of 'multinodual goiter' satisfied me until '00 when I turned 30 and

decided to have another look. I forced my way around my endo to

engage the TOP surgeon and luckily so, as the cancer had wrapped all

over my vocal cords. My endo was an excellent Dr. but lousy partner.

Last week I found a younger guy without as much experience but at

least I won't be walking out of the office in tears with frustration

as my questions get avoided or ridiculed by the 'expert'. I'm going

to be counting on this list and the research I can gather here more,

but I think the more I take control of my treatment, the better I'm

going to heal. I know how awful it feels to not trust your Dr.

to 'care'. I was holding out to switch until I finished this cycle

with my 6-9 month scan (more like 11months in real life)but realized

that I don't need the energy drain of doubting my doctor all the time.

Wishing you luck, however you decide to deal with it. Force those

questions through. It's your body. Feel free to write me privately

if you need a sympathetic ear. Jen

Papillary Diagnosed 5-01

TT-7-01

200 RAI-9-01

Next scan 8/02

> Hi everyone, this is my first post though I have been

> reading yours for the past week or so (since

> discovering this site). I wish I had found the Thyca

> association/website a few months back. Here's my

> story: Last September I went to my doctor because of

> a sore throat. She discovered a nodule and sent me to

> an ENT who eventually (after many other tests) sent me

> for an ultrasound guided needle biopsy. After doing

> the ultrasound, the doctor refused to do the biopsy

> because he said I had a multi-nodule goiter and it was

> " no big deal. " I practically begged him to at least

> biopsy the large nodule that I could feel and was

> beginning to cause me great discomfort. He refused –

> said it wasn't necessary. I went back to the ENT

> very upset and he reiterated that it was " no big

> deal. " Go home, you're fine, don't worry about it.

> No follow up required.

>

> As my mother had a total thyroidectomy 20 years ago, I

> decided I needed to see an endo to at the very least

> follow my " multi-nodules " to see if they grew, etc.

> After all the weeks of waiting for the various tests,

> appointments, etc., by the time I get to an endo it's

> late February. After relating my experience with the

> other doctors, he said that even if it was just a

> multi-nodule goiter it was very important to do a

> needle biopsy to make sure that it is benign – though

> because of the " dominant " nodule, he suspected cancer.

> But " thyroid cancer is the 'best kind of cancer'so

> don't worry about it -- " no big deal. "

>

> Sure enough, biopsy revealed papillary, and by this

> time, because of the delay, I was more or less rushed

> to surgery (3/5/02-total thyroidectomy). Final path

> revealed " infiltrating thyroid carcinoma with mixed

> follicular and papillary features. " My surgeon

> reported to me that he had to sacrifice muscle and

> nerves because of how much the cancer had spread and

> that he took special care to " scrap " the cancer from

> my vocal cords. I then had 181 mci Iodine 131 on

> April 15th.

>

> My endo, even though I think he is great, doesn't seem

> to want to explain anything to me. He says he will

> tell me what I need to know on a need to know basis.

> He never told him what to expect in a hypo condition

> in preparation for the Iodine, and because of that I

> returned to work much too early, and suffered greatly

> with all the effects (long story). And even though my

> TSH level is .018 (as of 6/7), I still feel hypo – I

> am tired all the time, no energy, hair falling out by

> the handful, depressed, various aches and pains, etc.

> At my last visit to my endo, I reported all this to

> him and he just dismissed it seemingly as " no big

> deal " with no explanation or comment – said at this

> point all I needed from him was my prescription and no

> need to return for six months – which will be December

> and at the time of my treatments in April I was told I

> would need another scan in six months which would be

> October. I don't understand. I guess endo doesn't

> think another scan necessary in October.

>

> After all I have been through, I don't have any

> confidence in any doctor any more. Therefore, I am

> thankful for having found this site and this

> organization so that I can understand a little about

> what is happening to me. I plan to attend the support

> group in my area (Atlanta) next week, and hope to go

> to the national meeting in October.

>

> Thanks to you all! (Any and all comments/suggestions

> appreciated.)

>

> Jan

> Friendjan@Y...

>

>

> __________________________________________________

>

[Guest guest]

Jan,

It is not acceptable to allow an endo to placate you. You are entitled

to answers about your disease and must demand them. Included here is a

recent statement by Ric Blake which are words we should all live by:

>As an advocate for my own healthcare, I've learned to: get

>everything in writing, keep copies of everything I get in writing, ask

>for a treatment plan, get a second opinion, research options.

Your tsh at 0.18, though in suppressive range, is not fully suppressed

for a thyca patient. We need to be at 0.10. What is your thyroid

replacement dose? The symtoms you are having with your hair is a

common hypo symptom due to when you were off medication. The hair will

all come back. The aches, pains, tiredness,depression should also

abate when you get to suppression. But keep in mind, most on this list

say it takes about a year for the body to fully adjust to all that has

happened and to feel like yourself again.

Do you know your Tg? Do you have an internist you can talk to about

your Tsh if the endo is not assessable?

The time frame for your next scan is six months to a year. So if it

happens in 7,8,9, months it should not make a difference in your well

being. the RAi dose you had is still doing it's job up to a year after

dosing.Some doctors wait a year.

Here on Thyca you will learn what you need to know so that the next

time you see your doctor you will be empowered. He won't be able to

brush you off then.

Ask lots of questions.....we all are eager to help!

Gail

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

w/hurthle cell, RAI, rad.neck dissection,lung surgery,

hashimoto, tg antibody 575, iodine resistant,existing

thyca nodules in lungs. Last surgery 1972

>

> Sure enough, biopsy revealed papillary, and by this

> time, because of the delay, I was more or less rushed

> to surgery (3/5/02-total thyroidectomy). Final path

> revealed " infiltrating thyroid carcinoma with mixed

> follicular and papillary features. " My surgeon

> reported to me that he had to sacrifice muscle and

> nerves because of how much the cancer had spread and

> that he took special care to " scrap " the cancer from

> my vocal cords. I then had 181 mci Iodine 131 on

> April 15th.

>

> My endo, even though I think he is great, doesn't seem

> to want to explain anything to me. He says he will

> tell me what I need to know on a need to know basis.

> He never told him what to expect in a hypo condition

> in preparation for the Iodine, and because of that I

> returned to work much too early, and suffered greatly

> with all the effects (long story). And even though my

> TSH level is .018 (as of 6/7), I still feel hypo – I

> am tired all the time, no energy, hair falling out by

> the handful, depressed, various aches and pains, etc.

> At my last visit to my endo, I reported all this to

> him and he just dismissed it seemingly as " no big

> deal " with no explanation or comment – said at this

> point all I needed from him was my prescription and no

> need to return for six months – which will be December

> and at the time of my treatments in April I was told I

> would need another scan in six months which would be

> October. I don't understand. I guess endo doesn't

> think another scan necessary in October.

>

> After all I have been through, I don't have any

> confidence in any doctor any more. Therefore, I am

> thankful for having found this site and this

> organization so that I can understand a little about

> what is happening to me. I plan to attend the support

> group in my area (Atlanta) next week, and hope to go

> to the national meeting in October.

>

> Thanks to you all! (Any and all comments/suggestions

> appreciated.)

>

> Jan

> Friendjan@Y...

[Guest guest]

Thanks for your reply. I think what needs to happen

is for the medical world to educate ENT's that

multi-nodule goiters should ALWAYS be biopsied and

that the " more nodules the less likely to be cancer "

rule is NOT always true and it's better to be safe

than sorry. Unfortunately it's the patients who end

up being sorry.

Jan

(P.S. My blood tests were also always " normal " prior

to surgery.)

--- Beaux12@... wrote:

> All right I have to jump in on this. In 1992, my

> GYN walked in the door,

> grabbed my throat and asked, " What is this??? You

> need to go to a endo and

> get this checked. " So I did....I had a US and was dx

> with a multi-nodular

> goiter. Every year, I went in and the endo checked

> my levels, which were in

> the normal range, and then he would palpitate my

> neck. Finally in 2000, 8

> yrs. later, I asked him if he was SURE that there

> was nothing else wrong. I

> was having a hard time breathing and swallowing and

> my goiter was pretty

> large. He agreed to do a FNA and it came back

> positive. I have to say that

> the hardest part of my thyca dx was, trying to

> forgive him....... I had

> trusted him with my life. When I had my TT, I was

> told that my thyroid was

> severely inflamed with Hashimotos and nodules all

> through it. How could he

> have left that in me for so long like that???

> Anyway, this past Jan. I let my

> anger go, and I feel so much better. It was a very

> hard thing to do. I know

> that people get miss dx all the time. Guess we are

> very lucky that thyca is

> slow growing, huh....

>

> Patty lin

> TT 6-6-00

> pa ca 1.3cm extension to soft tissue

> thyroglossal-duct cysts

> 7-10-00 110 MCI's

> 5-01 clean scan

> 5-02 thyogen scan clean TG>1

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Thanks, Gail, after reading these posts, I asked my

doctor for a copy of all my reports. My last one

(6/7) says my Thyroglobulin (is that tg?) is 0.5; T4,

Free (direct) 2.16; there is no mention on the report

of T3. Does that mean the doc is not checking it? I

understand, I think, from these posts that the T3

level is important. Is that true? I am on 150 mg.

Yes, I have an internist and will see him this week.

However, he is in the same group as my Endo so I'm not

sure how willing he would be to step into the Endo's

territory.

Jan

TT (3/5/02)

RAI 4/15/02)

--- fotoladyx2 wrote:

> Jan,

> It is not acceptable to allow an endo to placate

> you. You are entitled

> to answers about your disease and must demand them.

> Included here is a

> recent statement by Ric Blake which are words we

> should all live by:

>

> >As an advocate for my own healthcare, I've learned

> to: get

> >everything in writing, keep copies of everything I

> get in writing, ask

> >for a treatment plan, get a second opinion,

> research options.

>

> Your tsh at 0.18, though in suppressive range, is

> not fully suppressed

> for a thyca patient. We need to be at 0.10. What is

> your thyroid

> replacement dose? The symtoms you are having with

> your hair is a

> common hypo symptom due to when you were off

> medication. The hair will

> all come back. The aches, pains,

> tiredness,depression should also

> abate when you get to suppression. But keep in

> mind, most on this list

> say it takes about a year for the body to fully

> adjust to all that has

> happened and to feel like yourself again.

>

> Do you know your Tg? Do you have an internist you

> can talk to about

> your Tsh if the endo is not assessable?

>

> The time frame for your next scan is six months to a

> year. So if it

> happens in 7,8,9, months it should not make a

> difference in your well

> being. the RAi dose you had is still doing it's job

> up to a year after

> dosing.Some doctors wait a year.

>

> Here on Thyca you will learn what you need to know

> so that the next

> time you see your doctor you will be empowered. He

> won't be able to

> brush you off then.

>

> Ask lots of questions.....we all are eager to help!

>

> Gail

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

> w/hurthle cell, RAI, rad.neck dissection,lung

> surgery,

> hashimoto, tg antibody 575, iodine

> resistant,existing

> thyca nodules in lungs. Last surgery 1972

>

>

__________________________________________________

[Guest guest]

Hi, Jan -

Your " need to know " basis is that you need to know everything!! I

would not feel confident in this doctor either - and I hope you can

find a good endo who will really give you the care you DESERVE! What

an awful ordeal to have gone through.

When my nodule was found, it was a few weeks before I was due for a

hysterectomy. I, too, was put off, told that even if it WAS cancer,

which it was REALLY unlikely that it was, it grows so slowly that I

shouldn't worry about it, and should just wait till after my other

surgery to even get it diagnosed. I had to really push and push to

get the ultrasound and the FNA done before I went in for my hyst. I

now refuse to see the ENT who was unwilling to try and get me in

earlier for those diagnostic tests. It was torture to have to wait

over 5 weeks after the FNA to have my TT.

Maybe if some of these docs got ThyCa they'd realize it IS a big deal

and it isn't a " good " anything when it's in your body.

Read back in the archives of this group - you'll learn all those

things the endo didn't tell you!

Cheers,

Alisa

2/15/2002: Nodule found during bad sore throat

2/27/2002: FNA - suspicious for pap thyca

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

4/9/2002: TT - Stage 2 pap thyca encapsuled in 2.5 x 2 x 1.6 cm

nodule, Hashimotos discovered

5/28/2002: TBS (2 mCi dose on 5/24) and 100 mCi RAI

6/6/2002: TBS - No sign of mets

Currently on .125mcg Levoxyl (and 25mcg Cytomel till today)

Age: 48 Location: near Seattle WA

Please feel free to email me privately anytime

> Hi everyone, this is my first post though I have been

> reading yours for the past week or so (since

> discovering this site). I wish I had found the Thyca

> association/website a few months back. Here's my

> story: Last September I went to my doctor because of

> a sore throat. She discovered a nodule and sent me to

> an ENT who eventually (after many other tests) sent me

> for an ultrasound guided needle biopsy. After doing

> the ultrasound, the doctor refused to do the biopsy

> because he said I had a multi-nodule goiter and it was

> " no big deal. " I practically begged him to at least

> biopsy the large nodule that I could feel and was

> beginning to cause me great discomfort. He refused –

> said it wasn't necessary. I went back to the ENT

> very upset and he reiterated that it was " no big

> deal. " Go home, you're fine, don't worry about it.

> No follow up required.

>

> As my mother had a total thyroidectomy 20 years ago, I

> decided I needed to see an endo to at the very least

> follow my " multi-nodules " to see if they grew, etc.

> After all the weeks of waiting for the various tests,

> appointments, etc., by the time I get to an endo it's

> late February. After relating my experience with the

> other doctors, he said that even if it was just a

> multi-nodule goiter it was very important to do a

> needle biopsy to make sure that it is benign – though

> because of the " dominant " nodule, he suspected cancer.

> But " thyroid cancer is the 'best kind of cancer'so

> don't worry about it -- " no big deal. "

>

> Sure enough, biopsy revealed papillary, and by this

> time, because of the delay, I was more or less rushed

> to surgery (3/5/02-total thyroidectomy). Final path

> revealed " infiltrating thyroid carcinoma with mixed

> follicular and papillary features. " My surgeon

> reported to me that he had to sacrifice muscle and

> nerves because of how much the cancer had spread and

> that he took special care to " scrap " the cancer from

> my vocal cords. I then had 181 mci Iodine 131 on

> April 15th.

>

> My endo, even though I think he is great, doesn't seem

> to want to explain anything to me. He says he will

> tell me what I need to know on a need to know basis.

> He never told him what to expect in a hypo condition

> in preparation for the Iodine, and because of that I

> returned to work much too early, and suffered greatly

> with all the effects (long story). And even though my

> TSH level is .018 (as of 6/7), I still feel hypo – I

> am tired all the time, no energy, hair falling out by

> the handful, depressed, various aches and pains, etc.

> At my last visit to my endo, I reported all this to

> him and he just dismissed it seemingly as " no big

> deal " with no explanation or comment – said at this

> point all I needed from him was my prescription and no

> need to return for six months – which will be December

> and at the time of my treatments in April I was told I

> would need another scan in six months which would be

> October. I don't understand. I guess endo doesn't

> think another scan necessary in October.

>

> After all I have been through, I don't have any

> confidence in any doctor any more. Therefore, I am

> thankful for having found this site and this

> organization so that I can understand a little about

> what is happening to me. I plan to attend the support

> group in my area (Atlanta) next week, and hope to go

> to the national meeting in October.

>

> Thanks to you all! (Any and all comments/suggestions

> appreciated.)

>

> Jan

> Friendjan@Y...

>

>

> __________________________________________________

>

[Guest guest]

Hi!

This is my first post here. I also had a multinodular goiter. I

went hyperthyroid after the birth of my son. I too kept hearing

that it was no big deal and no needle biopsy was necessary.

To make a long story short- I took the unpopular route (against my

doctor's advice and a second opinion doctor's advice) of curing my

hyperthyroidism through surgery. Biopsy came back positive for

papillary thyroid cancer with spread to lymph nodes.

I had 100 millicurie rai last tues. I have my total body scan in a

few days to see where else the cancer may be. I am scared!

I will always wonder if someone had biopsied me, it could of been

found earlier...before it entered my lymph nodes.

-

[Guest guest]

,

I had a swollen lymph node that wouldnt go down in 2000.

my doc said it was nothing at all and forget about it.

but i had some scans done and then a biopsy which came back cancerous.

i had about 30 lymph nodes removed in addition to the thyroidectomy.

my doc said that i had the cancer for about 5 years and it had spread to my

lungs and maybe farther.

I'm on my 3rd RAI--both the others have been very effective.

if I hadnt pursued the one lymph node, i probably wouldnt have found the

cancer for a while longer.

Best,

>

>Reply-To: Thyca

>To: Thyca

>Subject: Re: " No Big Deal " -- My Story

>Date: Thu, 20 Jun 2002 04:34:40 -0000

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[Guest guest]

Hang in there .

I was told of my multinodular goiter in 88. I never thought anything about

it! All my bloodwork never showed any problems. March of 01 I found a

different family DR because I was always sooooooooooo tired and gaining

weight. That was the next time I had an ultrasound. That showed the goiter

and three months later they took another to compare and found that one of the

tumors was growing. They biopsy and found it suspect. I had my thyroid

removed Jan 3, 2002 and the RAI in March. I had .29 MCI and did not require

hospitalization since the tumor was a little less than a centimeter. I'm

waiting for the instructions for my 6 month scan and will again go thru

withdraw of synthroid and have the scan in August.

I hope all goes well for you and keep in mind that a good doctor will always

give you options and inform you of your situation to the best of their

ability. Ask all the questions you can.

I'll be thinking of you!

Dot