Re: In tears.... literally

[Guest guest]

Katrina,

I am so sorry to hear that you are having such a rough time with your doctors

and nuclear medicine! A few comments:

My doctor's nurse also told me that it could takeup to a week to schedule the

scan, but I was in within 2 days. Sometimes they might have to say that, but

from what it sounds like, the nurse who you were talking to doesn't actually

work in the nuclear dept of the hospital to where you are going.

Ten days to read it??? Huh? I am not an expert or anything on scans, but

that seems a bit long. When you are there, you may want to ask why it takes

that long. I mean, I could understand it, if this is a hospital where

millions and millions of people are going, to have scans done. But more than

likely - no. Can anyone who knows different jump in, here?

I am guessing they could schedule the radiation for within the next 1-3 days

after the scan is read, if its needed.

I agree wholeheartedly that your doctor should have discussed with you that

the time frame of all this would have you in isolation for the holidays -

that was not fair to you, and I would tell him or her! (Although I know that

won't make the situation any better - but it may make you feel a little

better).

I am sorry to say I don't have any witty comments for what you are feeling.

But, at some point or another, almost everyone here has been where you are.

The " hypo " ness, anger, sadness, etc. I will say that my heart goes to you and

that all of this is resolved very quickly and without any further frustration

or hassle for you. And I do hope that you will keep giving us updates, and

telling us what is going on.

You will be in my thoughts that all of this starts to work out, and settle

down.

Hugs to you,

- Northeast Ohio

5-02 FNA 6-02 Core Biopsy Dx papillary cancer 7-10-02 TT with lymph nodes

removed 7-29-02 RAI 156 mCi (current .175 Synthroid) - next TSH check

this Tues.

[Guest guest]

Dear Katrina--

I'm so glad you wrote--everyone in this group can empathize with

your frustration--and your resentment of having your life disrupted.

We have all felt that way at times.

First thing to do is have a good cry--no, have a great cry. It's really

important to get all of the emotion out of the way so you can deal

with the issues.

Then, when you are relatively calm, you need to get back to the

medical folks and explain what your situation is and ask the tough

questions.

Your situation is not too clear from what you wrote--so I'll make a lot

of guesses. You've only been off meds for two weeks--most of us

go off meds for 6 weeks before we have the RAI, and we observe

LID for the last two weeks only. So, unless you are just having a

follow-up scan, your timing is out of the norm. You need to ask

some questions. But before you do, go on the thyca website and

get a notion of the " usual " way our cancer is treated, so you can get

better explanation of the reasons why your treatment differs.

In my case, once I was diagnosed and had the tt, I was placed into a

protocol that was pretty much cut-and-dried. In fact, my physician

(nuc med) laid out a timeline for me on my first visit. And he did

back off from the holidays (I started going hypo four weeks before

Christmas, but did not start LID until the day after.) It was all

scheduled up front, so I knew exactly when I was going hypo, LID,

blood work, WBS, and RAI, even the followup scan was scheduled.

Ask to sit down with the Dr. and map out exactly what will happen

and when. It may be that you are dealing with an endo who is

dependent upon the radiologist. If that's the case, then you want to

get with the radiologist. Who makes the decisions? That's the MD

you want to talk with.

And BTW, my scan was read immediately and the dose of RAI was

determined from the scan.

As for ruining the holidays--a little perspective might be in order,

here. Remember, you are going to have a long (and hopefully

happy) life, thanks to the treatment that you are engaging in. If it's

possible to flex the schedule without jeopardizing your health--then

go for it. But if not, remember all of the upcoming holidays in which

you WILL be able to eat, drink, and be merry.

And boy, do I understand passing up goodies, I'm currently on LID

and I can't tell you how many special dinners I've attended in which

I've carried my own food and passed up the chocolate decadence!

It's tough.

Hang in there, Kiddo. Here on this list, we're all in this together.

Just don't do anything rash. And write anytime.

Blessings,

Colly

pt: 1981 (Pap Ca, 6 nodes involved),

pt:2001, tt:2001 (Recurrent Pap ca)

RAI 159 mci 1/02

Synthroid 200 mcg

[Guest guest]

Dear Katrina--

I'm so glad you wrote--everyone in this group can empathize with

your frustration--and your resentment of having your life disrupted.

We have all felt that way at times.

First thing to do is have a good cry--no, have a great cry. It's really

important to get all of the emotion out of the way so you can deal

with the issues.

Then, when you are relatively calm, you need to get back to the

medical folks and explain what your situation is and ask the tough

questions.

Your situation is not too clear from what you wrote--so I'll make a lot

of guesses. You've only been off meds for two weeks--most of us

go off meds for 6 weeks before we have the RAI, and we observe

LID for the last two weeks only. So, unless you are just having a

follow-up scan, your timing is out of the norm. You need to ask

some questions. But before you do, go on the thyca website and

get a notion of the " usual " way our cancer is treated, so you can get

better explanation of the reasons why your treatment differs.

In my case, once I was diagnosed and had the tt, I was placed into a

protocol that was pretty much cut-and-dried. In fact, my physician

(nuc med) laid out a timeline for me on my first visit. And he did

back off from the holidays (I started going hypo four weeks before

Christmas, but did not start LID until the day after.) It was all

scheduled up front, so I knew exactly when I was going hypo, LID,

blood work, WBS, and RAI, even the followup scan was scheduled.

Ask to sit down with the Dr. and map out exactly what will happen

and when. It may be that you are dealing with an endo who is

dependent upon the radiologist. If that's the case, then you want to

get with the radiologist. Who makes the decisions? That's the MD

you want to talk with.

And BTW, my scan was read immediately and the dose of RAI was

determined from the scan.

As for ruining the holidays--a little perspective might be in order,

here. Remember, you are going to have a long (and hopefully

happy) life, thanks to the treatment that you are engaging in. If it's

possible to flex the schedule without jeopardizing your health--then

go for it. But if not, remember all of the upcoming holidays in which

you WILL be able to eat, drink, and be merry.

And boy, do I understand passing up goodies, I'm currently on LID

and I can't tell you how many special dinners I've attended in which

I've carried my own food and passed up the chocolate decadence!

It's tough.

Hang in there, Kiddo. Here on this list, we're all in this together.

Just don't do anything rash. And write anytime.

Blessings,

Colly

pt: 1981 (Pap Ca, 6 nodes involved),

pt:2001, tt:2001 (Recurrent Pap ca)

RAI 159 mci 1/02

Synthroid 200 mcg

[Guest guest]

Dear Katrina--

I'm so glad you wrote--everyone in this group can empathize with

your frustration--and your resentment of having your life disrupted.

We have all felt that way at times.

First thing to do is have a good cry--no, have a great cry. It's really

important to get all of the emotion out of the way so you can deal

with the issues.

Then, when you are relatively calm, you need to get back to the

medical folks and explain what your situation is and ask the tough

questions.

Your situation is not too clear from what you wrote--so I'll make a lot

of guesses. You've only been off meds for two weeks--most of us

go off meds for 6 weeks before we have the RAI, and we observe

LID for the last two weeks only. So, unless you are just having a

follow-up scan, your timing is out of the norm. You need to ask

some questions. But before you do, go on the thyca website and

get a notion of the " usual " way our cancer is treated, so you can get

better explanation of the reasons why your treatment differs.

In my case, once I was diagnosed and had the tt, I was placed into a

protocol that was pretty much cut-and-dried. In fact, my physician

(nuc med) laid out a timeline for me on my first visit. And he did

back off from the holidays (I started going hypo four weeks before

Christmas, but did not start LID until the day after.) It was all

scheduled up front, so I knew exactly when I was going hypo, LID,

blood work, WBS, and RAI, even the followup scan was scheduled.

Ask to sit down with the Dr. and map out exactly what will happen

and when. It may be that you are dealing with an endo who is

dependent upon the radiologist. If that's the case, then you want to

get with the radiologist. Who makes the decisions? That's the MD

you want to talk with.

And BTW, my scan was read immediately and the dose of RAI was

determined from the scan.

As for ruining the holidays--a little perspective might be in order,

here. Remember, you are going to have a long (and hopefully

happy) life, thanks to the treatment that you are engaging in. If it's

possible to flex the schedule without jeopardizing your health--then

go for it. But if not, remember all of the upcoming holidays in which

you WILL be able to eat, drink, and be merry.

And boy, do I understand passing up goodies, I'm currently on LID

and I can't tell you how many special dinners I've attended in which

I've carried my own food and passed up the chocolate decadence!

It's tough.

Hang in there, Kiddo. Here on this list, we're all in this together.

Just don't do anything rash. And write anytime.

Blessings,

Colly

pt: 1981 (Pap Ca, 6 nodes involved),

pt:2001, tt:2001 (Recurrent Pap ca)

RAI 159 mci 1/02

Synthroid 200 mcg

[Guest guest]

Katrina, I can understand how badly you must be feeling right now. If

it is any consolation, I was in hospital recovering from my second

surgery over Easter; my first diagnostic scan was on my son's first

birthday and only after that was I told - no hugging or kissing for a

day; and my first LID was during the Kermis, an annual autumn fair

when we have lots of parties and eat Dutch " oliebollen " which were

definitely on the forbidden list. But I now have special memories of

those dark days, and whenever the Kermis comes round again I buy an

oliebol and eat it as we walk around the Fair. Nothing has ever

tasted as good as my first post-LID oliebol a year later!

Mind you, I'd probably want to do something unmentionable to the

hospital team that didn't discuss the dates with you beforehand and

give you a (preferably written) schedule...

My one practical thought would be to nail down the date, and if it has

to be during the holidays count back two weeks from that date and only

then start the LID, remembering that it is the second week that

counts.

Wishing you lots of strength

Judith (British living in Holland)

dx 1965 pap thyca T4-N1-M0

pt 1965 tt+rai 1982

>

> Out of sheer frustration, I am sitting here crying and blowing my

> nose. I have been off meds for 2 weeks today. I go Mon for my blood

> work. I spoke with the nurse today and what she said has sent me

> into a tail spin. After I get the blood test, it can take a week to

> get the scan sceduled, then 10 days for them to read it and then a

> few more to schedule the radiation if I need it. That puts me in

> isolation for thanksgiving and chanukkah. If I had known this, I

> would have postponed this until after the holidays. (snip)

[Guest guest]

Katrina, I can understand how badly you must be feeling right now. If

it is any consolation, I was in hospital recovering from my second

surgery over Easter; my first diagnostic scan was on my son's first

birthday and only after that was I told - no hugging or kissing for a

day; and my first LID was during the Kermis, an annual autumn fair

when we have lots of parties and eat Dutch " oliebollen " which were

definitely on the forbidden list. But I now have special memories of

those dark days, and whenever the Kermis comes round again I buy an

oliebol and eat it as we walk around the Fair. Nothing has ever

tasted as good as my first post-LID oliebol a year later!

Mind you, I'd probably want to do something unmentionable to the

hospital team that didn't discuss the dates with you beforehand and

give you a (preferably written) schedule...

My one practical thought would be to nail down the date, and if it has

to be during the holidays count back two weeks from that date and only

then start the LID, remembering that it is the second week that

counts.

Wishing you lots of strength

Judith (British living in Holland)

dx 1965 pap thyca T4-N1-M0

pt 1965 tt+rai 1982

>

> Out of sheer frustration, I am sitting here crying and blowing my

> nose. I have been off meds for 2 weeks today. I go Mon for my blood

> work. I spoke with the nurse today and what she said has sent me

> into a tail spin. After I get the blood test, it can take a week to

> get the scan sceduled, then 10 days for them to read it and then a

> few more to schedule the radiation if I need it. That puts me in

> isolation for thanksgiving and chanukkah. If I had known this, I

> would have postponed this until after the holidays. (snip)

[Guest guest]

Katrina, I can understand how badly you must be feeling right now. If

it is any consolation, I was in hospital recovering from my second

surgery over Easter; my first diagnostic scan was on my son's first

birthday and only after that was I told - no hugging or kissing for a

day; and my first LID was during the Kermis, an annual autumn fair

when we have lots of parties and eat Dutch " oliebollen " which were

definitely on the forbidden list. But I now have special memories of

those dark days, and whenever the Kermis comes round again I buy an

oliebol and eat it as we walk around the Fair. Nothing has ever

tasted as good as my first post-LID oliebol a year later!

Mind you, I'd probably want to do something unmentionable to the

hospital team that didn't discuss the dates with you beforehand and

give you a (preferably written) schedule...

My one practical thought would be to nail down the date, and if it has

to be during the holidays count back two weeks from that date and only

then start the LID, remembering that it is the second week that

counts.

Wishing you lots of strength

Judith (British living in Holland)

dx 1965 pap thyca T4-N1-M0

pt 1965 tt+rai 1982

>

> Out of sheer frustration, I am sitting here crying and blowing my

> nose. I have been off meds for 2 weeks today. I go Mon for my blood

> work. I spoke with the nurse today and what she said has sent me

> into a tail spin. After I get the blood test, it can take a week to

> get the scan sceduled, then 10 days for them to read it and then a

> few more to schedule the radiation if I need it. That puts me in

> isolation for thanksgiving and chanukkah. If I had known this, I

> would have postponed this until after the holidays. (snip)

[Guest guest]

>

> Out of sheer frustration, I am sitting here crying and blowing

> my nose. I have been off meds for 2 weeks today. I go Mon for

> my blood work. I spoke with the nurse today and what she said

> has sent me into a tail spin. After I get the blood test, it can

> take a week to get the scan sceduled, then 10 days for them to

> read it and then a few more to schedule the radiation if I need it.

This sounds bogus to me and I'm not sure I'd put a lot of stock into

what the nurse said. Many of us are fortunate enough to have Nuclear

Med Drs. who are quick to report....they know we have been off meds

and need the scan results to either be allowed back on meds or to have

RAI. Mine discusses my scan with me while the Tech is doing it,

usually gives me all his initial impressions before I leave his

office, telling me that he will compare it with my previous scans and

call my Endo with the results by the end of the day. I have never

had to wait more than 24 hours to know exactly what is planned for me

based on my scan. I hope you are as fortunate as I am. It would

absurb for you to have to wait 10 days to get the results of the scan

and if I were you, I'd already have a plan to discuss this with the

Dr. prior to scanning.

> That puts me in isolation for thanksgiving and chanukkah.

> If I had known this, I would have postponed this until after

> the holidays.

I was diagnosed at the end of Oct. 1994 and planned to have RAI by mid

Dec. But my TSH was s-l-o-w to rise (still is) and all this got

pushed farther out. As it turns out, I had my scan on Dec. 22 and

they found I had lung metastases. Plunked me in the hospital on Dec.

23, gave me 217mCi's of RAI and isolated me. My levels were low

enough to be released in the afternoon on Christmas Eve. Since all of

this had been rushed, we already had out-of-town Christmas company

done and everyone was at my house when I got home on Christmas Eve.

Of course, this was before the thyca listserv (practically prior to

the internet itself!) and I had no idea I need to be away from

everyone until I was released from the hospital with a long list of

instructions. As soon as we got home, I had to send our friends and

family home. I can laugh about it now, but I felt terrible at the

time. That year, RAI was the Grinch who stole Christmas!

Marilyn

Dx in 1994, papillary w/follicular variant and lung metastases.

Positive scans in '94,'95,'96,'97,'98. 435mCi's RAI. Clean scans

'99,'00,'02...the last one using Thyrogen.

[Guest guest]

>

> Out of sheer frustration, I am sitting here crying and blowing

> my nose. I have been off meds for 2 weeks today. I go Mon for

> my blood work. I spoke with the nurse today and what she said

> has sent me into a tail spin. After I get the blood test, it can

> take a week to get the scan sceduled, then 10 days for them to

> read it and then a few more to schedule the radiation if I need it.

This sounds bogus to me and I'm not sure I'd put a lot of stock into

what the nurse said. Many of us are fortunate enough to have Nuclear

Med Drs. who are quick to report....they know we have been off meds

and need the scan results to either be allowed back on meds or to have

RAI. Mine discusses my scan with me while the Tech is doing it,

usually gives me all his initial impressions before I leave his

office, telling me that he will compare it with my previous scans and

call my Endo with the results by the end of the day. I have never

had to wait more than 24 hours to know exactly what is planned for me

based on my scan. I hope you are as fortunate as I am. It would

absurb for you to have to wait 10 days to get the results of the scan

and if I were you, I'd already have a plan to discuss this with the

Dr. prior to scanning.

> That puts me in isolation for thanksgiving and chanukkah.

> If I had known this, I would have postponed this until after

> the holidays.

I was diagnosed at the end of Oct. 1994 and planned to have RAI by mid

Dec. But my TSH was s-l-o-w to rise (still is) and all this got

pushed farther out. As it turns out, I had my scan on Dec. 22 and

they found I had lung metastases. Plunked me in the hospital on Dec.

23, gave me 217mCi's of RAI and isolated me. My levels were low

enough to be released in the afternoon on Christmas Eve. Since all of

this had been rushed, we already had out-of-town Christmas company

done and everyone was at my house when I got home on Christmas Eve.

Of course, this was before the thyca listserv (practically prior to

the internet itself!) and I had no idea I need to be away from

everyone until I was released from the hospital with a long list of

instructions. As soon as we got home, I had to send our friends and

family home. I can laugh about it now, but I felt terrible at the

time. That year, RAI was the Grinch who stole Christmas!

Marilyn

Dx in 1994, papillary w/follicular variant and lung metastases.

Positive scans in '94,'95,'96,'97,'98. 435mCi's RAI. Clean scans

'99,'00,'02...the last one using Thyrogen.