Newbie

[Guest guest]

Hi Kim & welcome!

I was on Cytomel after surgery as well. Your doc will probably take you off

of it about 2 weeks before the scheduled date of the RAI. My RAI was 6

weeks after surgery.

Barb

TT 01/01, Pap Ca w/ nodal mets

RAI 100mCi 03/01

post-ablation scan 03/01 " clean " (neck uptake only)

Newbie

Hi. My name is Kim Dees. I am 30 years old and live in San , Tx. One

month ago I was diagnosed with Pappilary Thyroid Cancer. 2 weeks ago I

underwent a Thyroidectomy and was put on Cytomel. Before my surgery, my endo

had my on Synthyroid. He took me off of it after surgery. Not really sure

why. I am now waiting to go see him to prepare me for a Radioactive Iodine

Treatment. I am not sure what to expect with this.I would like to hear from

some members that can make me feel like I am not so alone. In February of 98

I was diagnosed with Stage 0 Cervical Cancer. I was operated on and so far

no

signs of it returning but I do have to go to the dr every 3 months for a

test. It was my gyno/cancer dr that found the lump on my thyroid and sent me

to an endocrinologist.

Well thank you and God bless,,

For more information regarding thyroid cancer visit www.thyca.org. If you

do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank

email to thyca-unsubscribe

[Guest guest]

Welcome Kim

I'm Jane and had my TT in November also Pap Cancer. Your post jumped at me as I

too had Cervical Cancer and it spread into Uterine Cancer once I was all done

with it. Needless to say I had a TH (Total Hystorectomy) when I was 26.. I'm

now 34 and no Thyroid. You've come to a great place for support and

information. I still consider my self a newbie too... There is so much to

learn!

Take care

Jane

11/21/01 TT, dx Papillary Carcinoma 3.0cm x 2.5cm Right lobe, and under a cm

left lobe, 1/18/01 RAI i131 75.2mCi, 4/16/01 still slightly hypo at 5.6

Synththroid .150 daily

New Scan and RAI at the end of July, Radiologists says I'll need a larger dosage

this time around due to large remnant left behind.

Newbie

Hi. My name is Kim Dees. I am 30 years old and live in San , Tx. One

month ago I was diagnosed with Pappilary Thyroid Cancer. 2 weeks ago I

underwent a Thyroidectomy and was put on Cytomel. Before my surgery, my endo

had my on Synthyroid. He took me off of it after surgery. Not really sure

why. I am now waiting to go see him to prepare me for a Radioactive Iodine

Treatment. I am not sure what to expect with this.I would like to hear from

some members that can make me feel like I am not so alone. In February of 98

I was diagnosed with Stage 0 Cervical Cancer. I was operated on and so far no

signs of it returning but I do have to go to the dr every 3 months for a

test. It was my gyno/cancer dr that found the lump on my thyroid and sent me

to an endocrinologist.

Well thank you and God bless,,

[Guest guest]

Hi Jane,

I was wondering ,, do you think that cervical cancer and thyroid cancer have

any connection? Also, did you have to have RAI treatments and if so, what

should I expect? Im very nervous and hope to find out some info before i have

to do it..

God Bless..

Kim

[Guest guest]

Dear Sharon:

I could give better advice if I had some more info. Who discovered the

nodule (your Ob/gyn, your primary care MD?) Who did the FNA biopsy? And who

sent you to this person? I am assuming that you already have some

physicians in place.

It seems pretty daunting if you have to find all of your physicians

yourself. I can only suggest you start networking. If you are in an HMO, I

suspect you need a primary care MD to recommend an endocrinologist. You

will want an endo with experience with thyca. Your endo should be able to

recommend a surgeon and he should also have experience doing

thyroidectomies. At this point you should not need an oncologist. Very

few of us need an oncologist at all. In finding these physicians it would

be in your best interest if you could talk to others who are treated by

these doctors.

If you tell us where you live, some of us may have names to pass on to you.

Good Luck,

Marilyn Loeb, Rochester, NY

Newbie

Hi:

I have just been diagnosed with Papillary Thyroid Cancer, via a Fine Needle

Aspiration Biopsy. My surgery is in June.

I have an HMO - It is falling to me to co-ordinate a Primary Care Dr;

Surgeon; Endocrinologist and Oncologist.

Can someone explain the role each of these plays in the scenario? Who does

what? Without burdening you with endless details I am getting very confused

and want to put this part to rest so I can get on with coping with the news

and prep for recovery.

Thank you for any light that can be shed on this " foreign world of

medicine " .

Sharon

For more information regarding thyroid cancer visit www.thyca.org. If you

do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank

email to thyca-unsubscribe

[Guest guest]

Dear Sharon-

Re: " The Surgeon has me booked at the hospital for only 1 day - which I just

found out. That concerns me, I have a very low tolerance for any meds,

especially anesthetic and will not even be awake the 2nd day - is this the

norm for this complete surgery + cancer? "

I can tell you that I, too expected to be nauseated, etc. after having

anesthesia and all and was pleasantly surprised that I didn't have any

problems. I felt lots of throat pain and was very sleepy for about 6 hours

after getting to my room after surgery (surgery took about 1 1/2 hours). By

then, I was taking my pain meds by mouth and was able to eat supper fairly

comfortably. I was up and about to the bathroom independently (dragging the

IV along of course).

By the next morning...I was up, out walking in the hall and was able to

shower after the dressing came off. It was FABULOUS! Still had the sore

throat, but was very manageable with pain pills. (sore throat was the

worst...incision pain not so noticeable) Was ready to go home by lunchtime.

Stopped off on the way home to get the kids from preschool (husband drove,

of course) and then went home for a nap. I would say I was back to full

strength (not needing a nap during the day) by day 4. I hope your surgical

course is similarly good.

As far as which MD should take care of which problem...I guess I would stick

w/ the oncologist if you really like her, provided she has dealt with this

disease before and can follow your labs appropriately and is able to read

body scans and the like. Just ask her what her level of experience w/ this

cancer is. If it's not something she generally deals with, I'd go to an

endo who sees it all the time. You really want your TSH managed

appropriately, trust me!

Sorry if this is too long! Good luck to you!

Barb

TT 01/01, Pap Ca w/ nodal mets

RAI 100mCi 03/01

post-ablation scan 03/01 " clean " (neck uptake only)

[Guest guest]

Sharon,

I'm sensitive to medications, too. A drug called Zofran was

recommended for nausea by friends who had surgery for other reasons.

I asked my anesthesiologist about this and he used it - I never had a

problem. You may want to ask your Dr./anesthesiologist about that. I

didn't take any prescription pain medication because of my

sensitivity to meds and because I didn't need anything more than a

nuprin or two for pain relief.

Also, one day stay seems typical for thyca surgery, but you may want

to ask if your Calcium levels are OK before you are discharged.

Sometimes this can be a problem after neck surgery, in rare cases it

can be a serious problem. Ask about it if you experience

tingling/numbness around your mouth, hands after surgery (even after

you go home).

I know how you feel!!

Sandy

> > Hi:

> > I have just been diagnosed with Papillary Thyroid

> > Cancer, via a Fine Needle

> > Aspiration Biopsy. My surgery is

> > in June.

> >

> > I have an HMO - It is falling to me to co-ordinate a

> > Primary Care Dr;

> > Surgeon; Endocrinologist and Oncologist.

> >

> > Can someone explain the role each of these plays in

> > the scenario?

>

> =====

> ________________________________________________

> Barb Burri

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

.175

> synthroid

> barburri@y... // bburri@m... // www.burri.com

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

>

> __________________________________________________

>

[Guest guest]

sharonk@... wrote:

> The Surgeon has me booked at the hospital for only 1 day - which I

> just

> found out. That concerns me, I have a very low tolerance for any

> meds,

> especially anesthetic and will not even be awake the 2nd day - is this

> the

> norm for this complete surgery + cancer?

Like many thyca patients, I had to have it done as a partial, followed

by a completion thyroidectomy. For my first surgery, I was in the

hospital overnight (which I thought was miserable!) and home the next

afternoon. Because I had tolerated the surgery so well, we convinced my

Drs. to let me have the completion surgery done at the out-patient

surgery center (using the same surgeon). It was a piece of care...just

like going to the dry cleaners....in by 10AM , out by 4PM! I felt great

that evening and much better than I did when I stayed in the hospital

overnight.

Seriously, most of us tolerate TT's pretty well. There is not a lot of

pain involved afterwards either and you can resume normal activities

very quickly. You'll do fine.

>>My problem, as I have become more and more informed, is confusion on

what

role they all play and just when do I leave one specialist and begin

with

another. If I don't need all of them, who is needed? CAN the

Oncologist

take care of what the Endo does? I have additional appointments with

the

Surgeon and the Endo - I am loath to let go of the Oncologist - she is a

rare find.<<

The Endo is most likely the Dr. you REALLY need to keep as he will

monitor you forever. If the Oncologist is very experienced in thyca

(unlikely....they never are) then you would want to see her in place of

the Endo. Find out how many thyca patients both the Endo and the Onc

see before deciding which one you really need.

Marilyn Sherman

Carlsbad, CA

[Guest guest]

Thanks Barb. Your experience is very encouraging. One can only hope for half

that tolerance!

Sharon

Sharon Connole-Key

Director of Office Ministries

First Presbyterian Church

138 North Main, Liberty MO. 64068

Office:

Fax:

Email: sharonk@...

RE: Newbie

Dear Sharon-

Re: " The Surgeon has me booked at the hospital for only 1 day - which I just

found out. That concerns me, I have a very low tolerance for any meds,

especially anesthetic and will not even be awake the 2nd day - is this the

norm for this complete surgery + cancer? "

I can tell you that I, too expected to be nauseated, etc. after having

anesthesia and all and was pleasantly surprised that I didn't have any

problems. I felt lots of throat pain and was very sleepy for about 6 hours

after getting to my room after surgery (surgery took about 1 1/2 hours). By

then, I was taking my pain meds by mouth and was able to eat supper fairly

comfortably. I was up and about to the bathroom independently (dragging the

IV along of course).

By the next morning...I was up, out walking in the hall and was able to

shower after the dressing came off. It was FABULOUS! Still had the sore

throat, but was very manageable with pain pills. (sore throat was the

worst...incision pain not so noticeable) Was ready to go home by lunchtime.

Stopped off on the way home to get the kids from preschool (husband drove,

of course) and then went home for a nap. I would say I was back to full

strength (not needing a nap during the day) by day 4. I hope your surgical

course is similarly good.

As far as which MD should take care of which problem...I guess I would stick

w/ the oncologist if you really like her, provided she has dealt with this

disease before and can follow your labs appropriately and is able to read

body scans and the like. Just ask her what her level of experience w/ this

cancer is. If it's not something she generally deals with, I'd go to an

endo who sees it all the time. You really want your TSH managed

appropriately, trust me!

Sorry if this is too long! Good luck to you!

Barb

TT 01/01, Pap Ca w/ nodal mets

RAI 100mCi 03/01

post-ablation scan 03/01 " clean " (neck uptake only)

For more information regarding thyroid cancer visit www.thyca.org. If you

do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank

email to thyca-unsubscribe

[Guest guest]

Dear Sandy:

Thank you for the info on this drug. I will ask about it.

It is a difficult thing, to be " in charge of " an area where one has no

expertise, the time frame is short and decisions can have serious

consequences.

Sharon

Re: Newbie

Sharon,

I'm sensitive to medications, too. A drug called Zofran was

recommended for nausea by friends who had surgery for other reasons.

I asked my anesthesiologist about this and he used it - I never had a

problem. You may want to ask your Dr./anesthesiologist about that. I

didn't take any prescription pain medication because of my

sensitivity to meds and because I didn't need anything more than a

nuprin or two for pain relief.

Also, one day stay seems typical for thyca surgery, but you may want

to ask if your Calcium levels are OK before you are discharged.

Sometimes this can be a problem after neck surgery, in rare cases it

can be a serious problem. Ask about it if you experience

tingling/numbness around your mouth, hands after surgery (even after

you go home).

I know how you feel!!

Sandy

> > Hi:

> > I have just been diagnosed with Papillary Thyroid

> > Cancer, via a Fine Needle

> > Aspiration Biopsy. My surgery is

> > in June.

> >

> > I have an HMO - It is falling to me to co-ordinate a

> > Primary Care Dr;

> > Surgeon; Endocrinologist and Oncologist.

> >

> > Can someone explain the role each of these plays in

> > the scenario?

>

> =====

> ________________________________________________

> Barb Burri

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

.175

> synthroid

> barburri@y... // bburri@m... // www.burri.com

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

>

> __________________________________________________

>

[Guest guest]

Dear Sharon, A word of caution----I was dx 12/96 when I developed a

tumor on my upper spine that turned out to be thyca mets. Because the

surgeon couldn't remove all the tumor I was sent for EBR (external beam

radiation) to try to get rid of the rest of the the tumor. Meantime, I

had other tests to determine the extent of the mets. My oncologist was

a wonderful man, very caring, never rushed me, etc. I liked him very

much. BUT His advise to me was to forego surgery, just have RAI to

ablate the thyroid gland and to try to " keep me comfortable " . He seemed

to feel, because of the extent of the mets(multiple bone sites) that I

didn't have long to go and no sense adding the risk and misery of

surgery. At that time I did not have a computer and therefore did not

have this body of knowledge available to me. Fortunately, I decided to

have the surgery anyway and it was quite definitely the right decision.

What I'm trying to say is, he was so so nice, but I'm sure didn't have

the exposure to thyca to make these important decisions for me. I think

he is probably very good in other areas, those more often seen, such as

breast and lung, etc. And frankly, I can't imagine the scenario where

an oncologist does have a lot of experience with thyca. For long term

follow-up, you really need to find an endo who has experience with the

thyca care.

Of course, my PCP wanted me to have my MRND done by a plastic

surgeon. :- ).

Best of luck to you.

lindalee@...

dx 12-96 follicular w/ bone mets

4 RAI= 840mCi 300mcg Synthroid

HPTH

Pgh., Pa

[Guest guest]

Sharon,

I have to totally agree with the Zofran recommendation. This was actually

the first word I hoarsely croaked out upon beginning to wake up! " ZOFRAN " I

already had it written in my chart and told everybody before hand to not

forget the ZOFRAN. I get very sick with anesthesia and codeine so both were

noted prominently on my chart. I was able to go home after 25 hours and

only had to take ibuprofen for 1 day -after that nothing. Try the ZOFRAN_it

works really well. Have your anethesiologist write it in your chart.

Debbi Re: Newbie

> Sharon,

>

> I'm sensitive to medications, too. A drug called Zofran was

> recommended for nausea by friends who had surgery for other reasons.

> I asked my anesthesiologist about this and he used it - I never had a

> problem. You may want to ask your Dr./anesthesiologist about that. I

> didn't take any prescription pain medication because of my

> sensitivity to meds and because I didn't need anything more than a

> nuprin or two for pain relief.

>

> Also, one day stay seems typical for thyca surgery, but you may want

> to ask if your Calcium levels are OK before you are discharged.

> Sometimes this can be a problem after neck surgery, in rare cases it

> can be a serious problem. Ask about it if you experience

> tingling/numbness around your mouth, hands after surgery (even after

> you go home).

>

> I know how you feel!!

>

> Sandy

>

>

> > > Hi:

> > > I have just been diagnosed with Papillary Thyroid

> > > Cancer, via a Fine Needle

> > > Aspiration Biopsy. My surgery is

> > > in June.

> > >

> > > I have an HMO - It is falling to me to co-ordinate a

> > > Primary Care Dr;

> > > Surgeon; Endocrinologist and Oncologist.

> > >

> > > Can someone explain the role each of these plays in

> > > the scenario?

> >

> > =====

> > ________________________________________________

> > Barb Burri

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

> .175

> > synthroid

> > barburri@y... // bburri@m... // www.burri.com

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

> >

> > __________________________________________________

> >

[Guest guest]

Dear :

Thank you for your insights into this dilemma. The interesting thing is that

the Oncologist is the one who offered to do the monitoring, follow-up tests

etc. after my surgery, and my Primary Care is the one who said I had to have

an Onc do the Radio Active Treatment.

Your description of your Dr. tells me you understand having to give up

someone who is easy to talk to, understands your emotional needs and will

listen to your questions. This Onc is my only light in this dark nightmare.

I have much to think about and a short time to make decisions.

Hope you are now well.

Sharon

Re: Newbie

Dear Sharon, A word of caution----I was dx 12/96 when I developed a

tumor on my upper spine that turned out to be thyca mets. Because the

surgeon couldn't remove all the tumor I was sent for EBR (external beam

radiation) to try to get rid of the rest of the the tumor. Meantime, I

had other tests to determine the extent of the mets. My oncologist was

a wonderful man, very caring, never rushed me, etc. I liked him very

much. BUT His advise to me was to forego surgery, just have RAI to

ablate the thyroid gland and to try to " keep me comfortable " . He seemed

to feel, because of the extent of the mets(multiple bone sites) that I

didn't have long to go and no sense adding the risk and misery of

surgery. At that time I did not have a computer and therefore did not

have this body of knowledge available to me. Fortunately, I decided to

have the surgery anyway and it was quite definitely the right decision.

What I'm trying to say is, he was so so nice, but I'm sure didn't have

the exposure to thyca to make these important decisions for me. I think

he is probably very good in other areas, those more often seen, such as

breast and lung, etc. And frankly, I can't imagine the scenario where

an oncologist does have a lot of experience with thyca. For long term

follow-up, you really need to find an endo who has experience with the

thyca care.

Of course, my PCP wanted me to have my MRND done by a plastic

surgeon. :- ).

Best of luck to you.

lindalee@...

dx 12-96 follicular w/ bone mets

4 RAI= 840mCi 300mcg Synthroid

HPTH

Pgh., Pa

For more information regarding thyroid cancer visit www.thyca.org. If you

do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank

email to thyca-unsubscribe

[Guest guest]

Dear Debbie:

Thank you too! This is one I will have on my written list for the hospital.

I too get very ill from codeine, among other things. Sharon

Re: Newbie

Sharon,

I have to totally agree with the Zofran recommendation. This was actually

the first word I hoarsely croaked out upon beginning to wake up! " ZOFRAN " I

already had it written in my chart and told everybody before hand to not

forget the ZOFRAN. I get very sick with anesthesia and codeine so both were

noted prominently on my chart. I was able to go home after 25 hours and

only had to take ibuprofen for 1 day -after that nothing. Try the ZOFRAN_it

works really well. Have your anethesiologist write it in your chart.

Debbi Re: Newbie

> Sharon,

>

> I'm sensitive to medications, too. A drug called Zofran was

> recommended for nausea by friends who had surgery for other reasons.

> I asked my anesthesiologist about this and he used it - I never had a

> problem. You may want to ask your Dr./anesthesiologist about that. I

> didn't take any prescription pain medication because of my

> sensitivity to meds and because I didn't need anything more than a

> nuprin or two for pain relief.

>

> Also, one day stay seems typical for thyca surgery, but you may want

> to ask if your Calcium levels are OK before you are discharged.

> Sometimes this can be a problem after neck surgery, in rare cases it

> can be a serious problem. Ask about it if you experience

> tingling/numbness around your mouth, hands after surgery (even after

> you go home).

>

> I know how you feel!!

>

> Sandy

>

>

> > > Hi:

> > > I have just been diagnosed with Papillary Thyroid

> > > Cancer, via a Fine Needle

> > > Aspiration Biopsy. My surgery is

> > > in June.

> > >

> > > I have an HMO - It is falling to me to co-ordinate a

> > > Primary Care Dr;

> > > Surgeon; Endocrinologist and Oncologist.

> > >

> > > Can someone explain the role each of these plays in

> > > the scenario?

> >

> > =====

> > ________________________________________________

> > Barb Burri

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

> .175

> > synthroid

> > barburri@y... // bburri@m... // www.burri.com

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

> >

> > __________________________________________________

> >

[Guest guest]

Hi Sharon;

well it is scarey stuff.. but try your best to relax

and get a grip on it.. before surgery typically they

have you meet with the anesthesiologist.. at least

around here they do, and for me that was quite

reassuring.. i had never had anesthesia and was

terrified, and knowing that up front, they were able

to reassure me, and give me a little sedative before

hand so i wouldn't be so freaked out....

the synthroid you had to help shrink it might have

made you feel so ill because you still have a thyroid

and it may have been too much for your system.. there

are a few types of synthetic thyroid hormone,

synthroid being just one brand name, and it comes in

lots of dosage sizes so it should work out to find one

that is right for you..

good luck.. keep asking questions... and hang in there

barb

--- sharonk@... wrote:

> Hi Barb:

>

> Thank you. What you have passed on is helpful. I

> have done much of this and

> will continue. You are right, I too AM scared to

> death!

> All of these treatments, side effects, etc are

> daunting. My body has a low

> tolerance for meds of any kind.

> I got violently ill from Synthroid - I was on a low

> dose to try and shrink

> the growth. I wasn't back to normal for 4 days.

> This is what I am told I

> will be on the rest of my life so that is a major

> concern for me. Once the

> thyroid is removed, if I can't tolerate the meds,

> the thyroid certainly

> can't be given back.

>

> As I read all the info back and forth from all of

> you, my heart aches for

> each of you and your struggles and at the same time

> feel grateful for the

> support and the information.

> Sharon

>

> Re: Newbie

>

> Hi Sharon;

> welcome, you've found a good spot for information.

>

> I'm in an HMO and the role of my primary care is to

> give me referrals to the other docs... and he had

> great recommendations for me for my other doctors.

>

> You'll need a surgeon - possibly and ENT surgeon

> because they are quite experienced in the structures

> of the throat and thyroid area to do the

> thyroidectomy. Ask lots of questions - how many has

> this individual done? how many do they do a year?

> Check out the " For Newbies " section on www.thyca.org

> it has other questions to ask about the surgery.

>

> You'll need an endrocrinologist, one who is familiar

> with thyroid cancer, ideally one who makes this a

> big

> part of the practice. This is the doc who generally

> coordinates all the thyroid care, the RAI, the

> scannings, the followup and bloodtests, the dosing

> with synthroid etc.

>

> And you might need a radiation oncologist who is the

> doctor who will run the protocol for the RAI

> ablation

> and sometimes the RAI scanning.

>

> Initially my Primary care " ran the show " - helped me

> find a surgeon and once i had the surgery, the ENT

> (ear nose throat) doc was the one who set me up for

> my

> initial scan to see how much tissue was left and

> passed me back to my primary care - there was very

> little tissue left and i wasn't sure about having

> RAI,

> and the ENT didn't think it was necessary so my

> primary care found me and endocrinologist that he

> thought would be good (and he was right)and my endo

> convinced me of the advantages of RAI and scheduled

> an

> ablation, and is now the one who runs the show for

> my

> thyroid care.

>

> you'll find that one of the rules is YMMV - your

> milage may vary, each person's experience with this

> disease is somewhat different although there is a

> pretty standard theme of the sequence of what takes

> place.

>

> learn a lot, ask lots and lots of questions of the

> doctors, ask lots of questions on the list, there

> are

> vast resources available here and overall as a group

> we can point you at many answers and resources.

>

> and relax and prepare for surgery.. i found the

> tapes

> by belleruth naparsek to be very valuable for me to

> help me get over being scared about the surgery and

> they did much to lower my anxiety level and assisted

> me to get through the days before surgery without

> making myself too crazy about the whole thing

>

>

> good luck

>

> barb

>

>

> --- sharonk@... wrote:

> > Hi:

> > I have just been diagnosed with Papillary Thyroid

> > Cancer, via a Fine Needle

> > Aspiration Biopsy. My surgery

> is

> > in June.

> >

> > I have an HMO - It is falling to me to co-ordinate

> a

> > Primary Care Dr;

> > Surgeon; Endocrinologist and Oncologist.

> >

> > Can someone explain the role each of these plays

> in

> > the scenario?

>

> =====

> ________________________________________________

> 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)

>

> __________________________________________________

>

[Guest guest]

> I got violently ill from Synthroid - I was on a low dose to

>try and shrink the growth. I wasn't back to normal for 4 days.

>This is what I am told I will be on the rest of my life so that is

>a major concern for me. Once the thyroid is removed, if I

>can't tolerate the meds, the thyroid certainly can't be given back.

Sharon,

Just a note here: Synthroid is not the only game in town when it

comes to thyroid hormone pills. There are other brands: Levoxyl,

Levothyroid, Unithyroid, etc. Some people have an allergic

reaction to the fillers and preparations used in a particular brand

of thyroid hormone pill---which maybe is the case for you and

Synthroid---but they do fine on any one of the many other brands.

So that's one less thing for you to worry about!

--Carmen in nyc

[Guest guest]

Hi, I had a partial in 1975 and a total in 1998. I

think that your dosage has not been leveled out yet.

I have not had weight gain as you have experienced.

When was the last time your levels were checked? I

have found that through the years, they can change

within 6 months. As far as taking years off our life?

Perhaps it has added years to our lives. I'd much

rather look at it that way than to think it has taken

off years.

My doctor (endo) has said that I will have a scan

every year for the first 3 years, then possibly every

2 after that. Have you asked about thyrogen? It is

an injection that you have instead of going hypo for 6

weeks. I used the thyrogen last year and it was

wonderful. I was able to maintain my job without an

incident. I am scheduled for another scan in mid

June.

Just try to remember that we are living with, not

dying from. :}

your thyca friend

Theresa

--- steve tracy wrote:

> This is my first email to thyroid support group. I

> am 34 years old and

> was diagnosed with Papillary thyroid cancer in 1998.

> Had total

> Thyroidectomy and follow radio iodine blast. My

> prognosis is excellent.

> I have gained 25 pounds since the surgery 2 years

> ago, and am wondering

> if that is the norm?? I feel dead tired by 6:30. A

> tiredness that

> differs greatly from before my surgery. I am taking

> 125 mg. of levoxyl i

> a day plus an extra half on friday.

> I was not too concerned about having thyroid

> cancer, but it depends on

> who I speak to. Some people say having your thyroid

> removed is like

> having a bad tooth pulled.. I can live with that.

> Others say, having

> your thyroid removed takes 12 years off your life,

> right off the top[.

> That Ican't live with. How long do I have to keep

> having

> scans?????????????????

> I hate going off my thyroid med for 6 weeks. I get

> migrains . Arn't I

> out of the woods in 5 years?? I won't need to be

> scanned after 5

> years??????? Look forward to hearing some

> experiences. It will feel

> good to have some understanding and support.

> Kathi

> chsk@...

>

__________________________________________________

[Guest guest]

Hi, I had a partial in 1975 and a total in 1998. I

think that your dosage has not been leveled out yet.

I have not had weight gain as you have experienced.

When was the last time your levels were checked? I

have found that through the years, they can change

within 6 months. As far as taking years off our life?

Perhaps it has added years to our lives. I'd much

rather look at it that way than to think it has taken

off years.

My doctor (endo) has said that I will have a scan

every year for the first 3 years, then possibly every

2 after that. Have you asked about thyrogen? It is

an injection that you have instead of going hypo for 6

weeks. I used the thyrogen last year and it was

wonderful. I was able to maintain my job without an

incident. I am scheduled for another scan in mid

June.

Just try to remember that we are living with, not

dying from. :}

your thyca friend

Theresa

--- steve tracy wrote:

> This is my first email to thyroid support group. I

> am 34 years old and

> was diagnosed with Papillary thyroid cancer in 1998.

> Had total

> Thyroidectomy and follow radio iodine blast. My

> prognosis is excellent.

> I have gained 25 pounds since the surgery 2 years

> ago, and am wondering

> if that is the norm?? I feel dead tired by 6:30. A

> tiredness that

> differs greatly from before my surgery. I am taking

> 125 mg. of levoxyl i

> a day plus an extra half on friday.

> I was not too concerned about having thyroid

> cancer, but it depends on

> who I speak to. Some people say having your thyroid

> removed is like

> having a bad tooth pulled.. I can live with that.

> Others say, having

> your thyroid removed takes 12 years off your life,

> right off the top[.

> That Ican't live with. How long do I have to keep

> having

> scans?????????????????

> I hate going off my thyroid med for 6 weeks. I get

> migrains . Arn't I

> out of the woods in 5 years?? I won't need to be

> scanned after 5

> years??????? Look forward to hearing some

> experiences. It will feel

> good to have some understanding and support.

> Kathi

> chsk@...

>

__________________________________________________

[Guest guest]

Welcome to our group, Kathi.

> I have gained 25 pounds since the surgery 2 years ago, and am

> wondering

> if that is the norm??

No....I would not say that is the norm. Some people do gain weight

while others do not (I gain while off meds for scanning, but lose it

once I'm back on my Levoxyl).

> I was not too concerned about having thyroid cancer, but it depends

> on

> who I speak to. Some people say having your thyroid removed is like

> having a bad tooth pulled.. I can live with that. Others say, having

> your thyroid removed takes 12 years off your life, right off the top.

That is a silly thing to say. Everyone differs in how they handle

surgery and medication but for someone to say it takes 12 years off

one's life is just plain silly. I was 45 at time of diagnosis and feel

that my quality of life has not been compromised in any way.

> How long do I have to keep having

> scans?????????????????

Depends. Have you had a 'clean' scan yet? I am abnormal in that I was

a 'frequent scanner' due to lung metastases so I've had 7 scans since

1994. But I finally had a clean one in 1999, followed by a 2nd clean

one in 2000, so I am not scanning this year (I'll scan again in early

2002). My Endo's goal for thyca patients is that they have " two clean

scans, one year apart " before lengthening the time frame between scans.

Many others have only had one or two scans before switching to a much

longer time period between scans. Some of this is dependent on the type

of thyroid cancer, the size of original tumor, whether or not it was

encapsulated and if there was any spread. Tell us more about how

extensive your cancer was.

And don't forget....there is also Thyrogen (rTSH).... in which you do

not have to withdraw from your medication in order to scan. Two

injections boost your TSH so that you can scan without suffering from

hypo hell. It's less accurate than scanning the old fashion way, but it

is still useful for many.

> I hate going off my thyroid med for 6 weeks. I get migrains . Arn't

> I

> out of the woods in 5 years?? I won't need to be scanned after 5

> years???????

Well......not exactly 'out of the woods'. Thyroid cancer seems to be

different in that regard in that it may recur after many years. It is

necessary to stay vigilent....with routine bloodwork and keeping TSH

suppressed....plus the occasional scan.

Glad you've found our group. You'll get lots of straightforward &

helpful answers here!

Marilyn (dx '94-pap w/lung metastases - 5 pos scans/435mCi's - scans 6 &

7 clean)

[Guest guest]

Welcome to our group, Kathi.

> I have gained 25 pounds since the surgery 2 years ago, and am

> wondering

> if that is the norm??

No....I would not say that is the norm. Some people do gain weight

while others do not (I gain while off meds for scanning, but lose it

once I'm back on my Levoxyl).

> I was not too concerned about having thyroid cancer, but it depends

> on

> who I speak to. Some people say having your thyroid removed is like

> having a bad tooth pulled.. I can live with that. Others say, having

> your thyroid removed takes 12 years off your life, right off the top.

That is a silly thing to say. Everyone differs in how they handle

surgery and medication but for someone to say it takes 12 years off

one's life is just plain silly. I was 45 at time of diagnosis and feel

that my quality of life has not been compromised in any way.

> How long do I have to keep having

> scans?????????????????

Depends. Have you had a 'clean' scan yet? I am abnormal in that I was

a 'frequent scanner' due to lung metastases so I've had 7 scans since

1994. But I finally had a clean one in 1999, followed by a 2nd clean

one in 2000, so I am not scanning this year (I'll scan again in early

2002). My Endo's goal for thyca patients is that they have " two clean

scans, one year apart " before lengthening the time frame between scans.

Many others have only had one or two scans before switching to a much

longer time period between scans. Some of this is dependent on the type

of thyroid cancer, the size of original tumor, whether or not it was

encapsulated and if there was any spread. Tell us more about how

extensive your cancer was.

And don't forget....there is also Thyrogen (rTSH).... in which you do

not have to withdraw from your medication in order to scan. Two

injections boost your TSH so that you can scan without suffering from

hypo hell. It's less accurate than scanning the old fashion way, but it

is still useful for many.

> I hate going off my thyroid med for 6 weeks. I get migrains . Arn't

> I

> out of the woods in 5 years?? I won't need to be scanned after 5

> years???????

Well......not exactly 'out of the woods'. Thyroid cancer seems to be

different in that regard in that it may recur after many years. It is

necessary to stay vigilent....with routine bloodwork and keeping TSH

suppressed....plus the occasional scan.

Glad you've found our group. You'll get lots of straightforward &

helpful answers here!

Marilyn (dx '94-pap w/lung metastases - 5 pos scans/435mCi's - scans 6 &

7 clean)

[Guest guest]

Hi Kathi & welcome to our group,

As you can see by my closing I've been " living with " cancer for

many years. After 5 years, I considered myself 'cured' and went

along as If I hadn't had cancer. After 17 years, it returned; I

was given a large dose of RAI r/t chest mets and am now 19 years

out from that.

I have only had weight gain seven years ago and it was

attributed to the lowering of my calcium level, and not thyroid

dosage related.

Hang in there. There is hope that the weight may come off when

you reach your optimal replacement dose and your energy should

return, as well.

Since you said that your prognosis is excellent, I think you can

think more about living than dying.

<snip> Some people say having your thyroid removed is like

having a bad tooth pulled.. I can live with that. Others say,

having your thyroid removed takes 12 years off your life, right

off the top.

I don't think either of these statments is accurate. The tooth

person surely didn't have a thyroidectomy and the other probably

looks at much of life with a pessimistic attitude.

I had yearly scans for the first five, then bi-annually for

two clean scans, then every three years. Every endo is different

in that regard. My last scan was in 1996 (clean) and I will be

having one in the near future.

Your thyca friend,

=====

...

3/25/65 tt Papillary ThyCa w/lymph node mets

HPTH 3 days post radical tt

3/25/82 Recurrence in neck/ & R chest

Tx w/RAI 131 176 mCi

hx kidney stones

__________________________________________________

[Guest guest]

Thank you for ALL the replies> I was in need of some understanding only

fellow thyca patients could give. I think this will give me a much

needed support. I can tell about my RAI scan (blast) experience. The

room in the hospital was kind of scary to look at because everything is

covered up with plastic, and human contact is minimal, but the worst part

was the bordem and not being able to cuddle my kids. Any how it really

is over before you know it and think of all the good it is going to do

you. I had no nausea only some diarrhea. I took lemondrops to suck on

to keep the saliva going and I drank lots of water to clear out my

bladder. Can others do this, I don't know, so check with your DR. I

read magazines till I could hardly see. Good Luck to all and be strong,

Kathi at tracychsk@... papillary 1998, one lymphnode in neck

affected, 1 clear scan since getting ready for the next scan end of year

[Guest guest]

Hi Steve, Thanks for the information. I go for my

RAI in July. My first time. I don't know what to

expect but you surely said enough. I plan on taking a

lot of reading material. Hope I won't go blind! Do

you think I will be able to take a cassette player to

hear some tunes? Will wait for your reply. And

Again, thanks, Myrna tt 3/01 pap thyca with lymph

nodes involved waiting for RAI.

--- steve tracy wrote:

> Thank you for ALL the replies> I was in need of

> some understanding only

> fellow thyca patients could give. I think this

> will give me a much

> needed support. I can tell about my RAI scan

> (blast) experience. The

> room in the hospital was kind of scary to look at

> because everything is

> covered up with plastic, and human contact is

> minimal, but the worst part

> was the bordem and not being able to cuddle my kids.

> Any how it really

> is over before you know it and think of all the good

> it is going to do

> you. I had no nausea only some diarrhea. I took

> lemondrops to suck on

> to keep the saliva going and I drank lots of water

> to clear out my

> bladder. Can others do this, I don't know, so check

> with your DR. I

> read magazines till I could hardly see. Good Luck

> to all and be strong,

> Kathi at tracychsk@... papillary 1998, one

> lymphnode in neck

> affected, 1 clear scan since getting ready for the

> next scan end of year

>

__________________________________________________

[Guest guest]

Funny you should say, you were too hypo to read, I remember NOTHING of

what I read in the hospital, but I know at the time I enjoyed some of the

mags. Can't even remeber which ones I took in with me, and of course

they had to stay afterf I got out of the hospital.

Kathi

papillary

1998

total thyroidectomy

blast

1 clear scan

[Guest guest]

Hi Kathi,

Can't relate to the silicon implants. But, I do remember an article published

in the last...maybe 5 mths....on an increased risk of breast cancer for thycans.

I'll find it and pass it along. I remember thinking after reading it that there

wasn't that much substance to it (my opinion). I'll find it.

Sandy

Re: Newbie

Hi! I am still getting use to all this access to support. It is

wonderful. I have not recieved any responses to my question about

breast implants and iodine?? One of mine is known to be ruptured. No

surgery because it is encapsulated. Also, has anyone read about thyca

patients having 3 times the breast cancer risk????. Something to do with

the hormones we have to take. Waiting to hear from my new support

friends at Thyca.org

Kathi

papillary

dx 1998

lymph node positive

1 clear scan

[Guest guest]

Hi Kathi,

Can't relate to the silicon implants. But, I do remember an article published

in the last...maybe 5 mths....on an increased risk of breast cancer for thycans.

I'll find it and pass it along. I remember thinking after reading it that there

wasn't that much substance to it (my opinion). I'll find it.

Sandy

Re: Newbie

Hi! I am still getting use to all this access to support. It is

wonderful. I have not recieved any responses to my question about

breast implants and iodine?? One of mine is known to be ruptured. No

surgery because it is encapsulated. Also, has anyone read about thyca

patients having 3 times the breast cancer risk????. Something to do with

the hormones we have to take. Waiting to hear from my new support

friends at Thyca.org

Kathi

papillary

dx 1998

lymph node positive

1 clear scan