Re: Question about Metastases

[Guest guest]

Alisa,

I had a scan done the week after my RAI in January of last year. As

to what it said... I don't really know?? The endo never really said anything

about the scan. I guess it was my own stupidity for not asking more

questions in his office. To be perfectly honest, until I subscribed to the

list, I didn't really even know that I had a right to have copies of all the

reports. I requested them when I went for my appointment last Monday. I

have not received them yet, but I figured that it was because of the

holidays. I'm going to call tomorrow since I will be in town for the biopsy

on my knee, and see if they have sent them yet and if not I'm hoping that I

can just pick them up. I'm anxious to read what they say. As well as the

bloodwork results, I asked for a copy of the surgeon's report, as well as the

RAI treatment report. Is there anything else I should be asking for?

I am cold all the time and very tired, but I have to keep pushing

myself to go. I have my job and college classes to keep up with. I guess

one of my main fear and worry is that I'm afraid I will have to be off work

and out of classes again. I can't miss another semester of classes. If I

do, I will loose all my financial aid and scholarships that I have been

awarded. It took a great deal of fighting to get them back after being off

during last spring and summer semesters. At this point, I'm not even sure

how I got them back, I guess I had someone on my side. The people that I

talked with for my state scholarship said that they couldn't help that I got

sick and that they had to stick by the guidelines of the scholarship and if

you miss a semester then it is gone and it's not given back. My job on the

other hand is very supportive and willing to do whatever they can to help me

out. They are like my adopted family. They are great!!

Sorry, got off on my little tangent there. Anyway, there are some

concerns that I have that have been making me wonder if the cancer has

metastasized. For example the lump that has developed in my knee, difficulty

swallowing and breathing, and for some reason the left side of my neck seems

a bit swollen or something. I think sometimes I'm just overeacting because

I'm so worried and scared.

I have only had the one scan right after my RAI, and I'm not sure what

it said. Honestly, I'm not sure why the endo is doing the thyrogen for my

scan. I thought for sure that he would do a hypo scan. He said that he

doesn't rarely do those anymore.

Take care,

land

Thyroid Ultrasound (June 01) 6 nodules found; 3 on right and 3 on left

Uptake Scan (end June 01) nodules found to be solid

FNB (October 01) suspicious for cancer

TT (Dec 01) papillary cancer, spreading to lymph nodes neck and muscle

RAI (Jan 02)

Levoxyl-175mcg (Mon.-Friday); 200 mcg (Sat. & Sun.)

[Guest guest]

Hi ,

Questions are always welcome on this list and apologies are not

necessary for wanting to understand the disease.

There is no specific time for metastases to occur, they can occur at

any time in the next 40 years. But keep in mind, most people have only

one occurance of the disease. One of the stops in metastatic

progression is the thyroglobulin (tg )test which your doctor should be

doing when your blood is checked. The thyroglobulin can find activity

long before it ever becomes obvious. The best thing you can do as

patient is be vigilant about testing and proper dosing. Thyca is a

lifelong journey that in time will not seem so worrisome.

Now, if you are worried that you have metastases that is not an

uncommon concern in the beginning. Remember you are being tested,

this is a very slow growing disease, and if it does recur you have

radioiodine to turn to to ablate it.

Just make sure your TSH is adequately suppressed to <0.10 or lower,

that your tg is done routinely, and then try very hard to think about

all the wonderful things you are going to do with the rest of your

life...and go out and do them.

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

> Hello,

>

> First, I feel that I must apologize for all my questions here

lately.

> Right now, I have so many questions inside and I'm not sure where

they are

> all coming from. I feel like I know nothing about this cancer and I

was

> diagnosed a year ago. I even find myself feeling very depressed and

crying

> because I feel so confused at times. My question is if you have

metastases,

> is that found in the beginning with your first scan after RAI

treatment or is

> it or can it be found during a later body scan, for instance the

first year

> WBS? I hope that makes sense. I thank each and everyone of you for

all your

> help and information. Take care.

>

>

[Guest guest]

- As Gail said, don't apologize for asking questions - that's

part of what this group is all about!

Think of what you are learning now about thyca, rather than what you

didn't know before. It is kind of confusing, but by asking questions,

and learning, you'll feel more in control, and that can help

depression and fear.

I have a few questions for you:

Did you have a post-RAI scan? What did they see in that scan? I'm

guessing from what you say below that you did, and that they didn't

see any mets.

Do you know your current blood levels for:

TSH

TG

TgAb (thyroglobulin Antibodies)

I'm asking because I'm not clear if your worry about mets is just a

generalized fear (which we've all had) or if there's a specific reason

that is causing this concern. Also, in an earlier letter you mention

being cold all the time, which can indicate being hypo.

You also mention that you're using thyrogen for this scan. Have you

had any clean scans yet? If this is your first post RAI scan, and if

there is a medical reason for the concern about mets, you may want to

consider the possibility of doing a hypo scan, since it is a bit more

reliable than the thyrogen ones.

Cheers,

Alisa

Currently - 140mcg Levoxyl and a cytomel a day for good measure

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: WBS (2 mCi) and 100 mCi RAI --- 6/6/2002: WBS - No mets

12/16/02: WBS (5 mCi): clean scan - no thyroid tissue in body!!!

Age: 49 -- Location: near Seattle WA --- 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

LID thoughts, tips, ideas -

http://groups.yahoo.com/group/Thyca/message/25430

> Hello,

>

> First, I feel that I must apologize for all my questions here

> lately. Right now, I have so many questions inside and I'm not sure

> where they are all coming from. I feel like I know nothing about

> this cancer and I was diagnosed a year ago. I even find myself

> feeling very depressed and crying because I feel so confused at

>times. My question is if you have metastases, is that found in the

> beginning with your first scan after RAI treatment or is

> it or can it be found during a later body scan, for instance the

> first year WBS? I hope that makes sense. I thank each and everyone

> of you for all your help and information. Take care.

>

>

>

>

[Guest guest]

> Alisa,

>

> I had a scan done the week after my RAI in January of last

> year. As to what it said... I don't really know?? The endo never

> really said anything about the scan. I guess it was my own

> stupidity for not asking more questions in his office.

You're not stupid. We have to take the responsibility for asking

questions, because otherwise we often don't get the answers we need,

but that doesn't make you stupid for not asking! The doctors should

be telling you what is happening. And it's an awful lot to deal with

all this. Sometimes it's hard to know what questions to even ask.

Don't kick yourself.

> To be perfectly honest, until I subscribed to the list, I didn't

> really even know that I had a right to have copies of all the

> reports. I requested them when I went for my appointment last

> Monday. I have not received them yet, but I figured that it was

> because of the holidays. I'm going to call tomorrow since I will be

> in town for the biopsy on my knee, and see if they have sent them

> yet and if not I'm hoping that I can just pick them up.

Good - so you've now learned something that will keep you better

informed. I really find this helps the fear - I think the unknown is

worse than knowing, even knowing something not so good. You're

getting on a good path here!

> I'm anxious to read what they say. As well as the

> bloodwork results, I asked for a copy of the surgeon's report, as

> well as the RAI treatment report. Is there anything else I should

> be asking for?

This sounds good to my somewhat still hypo brain. I just tell them I

want copies of everything they have. Let us know what all these

reports say.

>snip about college and job<

It's great that your co-workers are supportive! There are folks here

who've gone through college and jobs while getting scans, and I'm sure

they'll chime in with their thoughts and suggestions for getting

through it.

> Anyway, there are some concerns that I have that have been making me

> wonder if the cancer has metastasized. For example the lump that

> has developed in my knee, difficulty swallowing and breathing, and

> for some reason the left side of my neck seems a bit swollen or

> something. I think sometimes I'm just overeacting because I'm so >

worried and scared.

I wish I could help here - I don't know which it is, but it's good to

check out anything that's a concern to you. And I think it's common

to be more concerned about things after you've already had a cancer

diagnosis.

> I have only had the one scan right after my RAI, and I'm not

> sure what it said. Honestly, I'm not sure why the endo is doing the

> thyrogen for my scan. I thought for sure that he would do a hypo

> scan. He said that he doesn't rarely do those anymore.

A lot of docs are doing them, though many want one or two clean scans

before they do thyrogen. It's your body, and a decision you should

make with your Endo. Reading the reports may give you a better sense

of what the best move will be for you. You'll be able to discuss it

intelligently with your Endo.

Hang in there!

Cheers,

Alisa

Currently - 140mcg Levoxyl and a cytomel a day for good measure

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: WBS (2 mCi) and 100 mCi RAI --- 6/6/2002: WBS - No mets

12/16/02: WBS (5 mCi): clean scan - no thyroid tissue in body!!!

Age: 49 -- Location: near Seattle WA --- 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

LID thoughts, tips, ideas -

http://groups.yahoo.com/group/Thyca/message/25430

[Guest guest]

>

> >snip about college and job<

>

> It's great that your co-workers are supportive! There are folks

> here who've gone through college and jobs while getting scans, and I'm

> sure they'll chime in with their thoughts and suggestions for getting

> through it.

I don't know how many of us are college age and have to hold down a job

and stay up late doing homework while hypo etc... I had a TT 05/30/02,

iodine treatment in July and started my " supposedly " last semester in

civil engineering at the University of New Mexico (while interning at a

local engineering firm in Albuquerque). When school started in August

my TSH was 17.5 and I had been on levothroid for 2 and a half weeks.

To say the least I had some major problems; I thought I was going

crazy. Sometimes I would drive to work and wonder how I got there...

I'm surprised I haven't been fired yet. My semester turned out alright

but I dropped my senior design to decrease my stress and I will take

that next semester and graduate in May. Right now my TSH is 0.2 and I

still feel stupid and mentally slow at times (I have no idea how I

passed my classes). My worst complaint is that I don't feel like

myself. I feel " off " or kind of weird all the time. I can obviously

function well, but I don't want to feel weird for the rest of my life.

Am I the only one who feels strange when I am supposedly balanced and

stable on T4? I'm curious about the combined T4/T3 treatment. Am I

just paranoid and feeling weird is just in my head? I know I am prone

to over-reacting now that I've had cancer, but I'm positive that I

don't feel right.

Margaret

New Mexico

TT 05/30/02

RAI 07/19/02

Ultrasound 12/06/02 clear but thyroglobulin still high