Re: New and Kind of Worried

[Guest guest]

Hi ,

16 years old is young to have to go through an ordeal

such as this - and even though you are 4 years older

now, I commend you on getting yourself this far - and

it seems on your own.

My first question to you is what other supports do you

have in your life that can lend a helping hand or

supportive ear, or just even assist with all this

wacky medical stuff that we deal with - family?

friends?

I am 24, and there is absolutely no way I could have

made it through this on my own. Even though my family

lives 5 hours away - my parents helped me with the

tough stuff, like helping select a surgeon, etc.

Since you have had your surgery 4 years ago, follow up

is critical, as it is for most thycans. It seems you

have not been satisfied with your follow up care.

My reccommendation to you is to first, find yourself a

good endocrinologist. You did not mention having one

so I am not sure if you do. The endo is a specialist

with this stuff and we need this kind of knowledge and

care. You can be referred to one by your doctor or

tyr to find one in your area. Since you live near a

big city, it shouldn't be a problem.

Once you get the quality care you need, things will

become a lot easier and a lot more reassuring. I

speak from experience because I did not see an endo

when I was first diagnosed with hypothyroidism and

nodules. The PCP didn't even biopsy my nodules. Then

my cousin, who also has hypothyroidism, told me that I

HAD to see an endocrinologist - even just to follow up

with my hypo condition. When I saw him, he biopsied

me immeadiately and diagnosed me with papillary cancer

- which was becoming quite the little aggressive kind.

If it weren't for him and for me being so proactive

and aggressive with my care, my cancer might not have

been found.

It sounds like you too are proactive and recognize

that something's not right. And if you don't feel

confident or feel something's off - then it's time to

make a change. Stay with it - because you are on the

right track. Sometimes you have to be your own

doctor, but hopefully you can find a great one too.

Best Wishes,

Pattie

=====

Dx Familial Pap Thyca, Hashimoto's Thyroiditis - 11/01

TT - 12/20/01

RAI 150 mCi - 2/12/02

__________________________________________________

[Guest guest]

Hi Pattie,

Thanks for taking the time to talk a bit to me. Yes, its been a kind

of rough past 4 years. I know I complained a bit of having to live a

different life than my friends, but it has also helped me learn a lot

about life, so I guess I can't complain about everything. Something

really can make you stronger. Just why its got to be the tough

things, I don't know.

As for support, well, there isn't much. My parents of course are

always willing to help. They know what is going on medically as do

most people. I am willing to talk openly about the medical side of

this. When it comes to sharing how I personally feel about it, I keep

very much to myself. I've been through some very low times in the

last 4 years, but keep it all inside, because so many expect me to be

strong. I know that really sounds stupid, but its nothing but the

truth. I do have a very supportive boyfriend that I talk to about

most of this, but I am trying not to go too in depth most the time,

because he wasn't around during everything and I don't want to scare

him.

As for my Doctors. An Endo dx'd me and did my surgery. I followed up

with her for two years or so and then was released to a regular

Internal MD. This is when the " unsatisfactory " care began. No hard

feelings, I really liked the Doctor, I just feel she was not well

experienced in following up ThyCa.

I do want to be sure to find one that will work with me to make sure

that I am always at my healthiest. I am working on finding a new

regular doctor and an Endo also. My first goal is to get a Tg test

done, just to finally feel like I am being properly monitored. I

have one more bloodwork at the end of this month with the old Doc. I

will try giving her one more chance and asking for a Tg test just to

see. Perhaps I can get somewhere with her.

Thanks again and nice to meet you!

~

[Guest guest]

Hi ,

I just wanted to say hi and welcome. I am fairly new also. I was

just diagnosed May 14th. I will begin the trip to Hypo today and

will have the RAI on June 26th.

I am sorry you aren't feeling well. I am sorry you have to

worry. It is a worrisome thing. I tend to worry more on the days

that I am not feeling so good. It seems like when we feel physically

good the cancer thing goes to the back of my mind. I want so

desperately not to let this get to me. Soo I keep talking to myself.

I hope you can get your meds adjusted so you can feel beter then

maybe the worry will lessen.

We just recently found out that our family carries a gene for

medullary cancer.We were all tested. I was positive, had the TT. Had

Medullary and papillary cancer. I have three children they all came

back positive. They are going to see the surgeon on the 18th to

schedule their TT's. My daughter will turn 22 in Sept. so u and she

are the same age. I think I can relate to how you are feeling now.

Email if you would like to talk, I am here for you.

Donna in Ky.

TT-5/8/02

confirmed meduallary-papillary-5/14/02

RAI-6/26/02

S

> Hello Everyone!

>

> I'd just like to say hi and introduce myself. I'm new to this

board

> but not exactly new to ThyCa.

>

> I was diagnosed with Papillary variant of ThyCA in 1998 when I was

> 16. I underwent a TT with two tumors (one benign-5cm; one

malignant-

> 8mm). My endo decided at the time that the cancerous tumor was

not

> large enough for RAI, so to this time I have received no RAI.

>

> Two years later I was released to see just an Internal MD and I

just

> blindly trusted that I was being followed up correctly. As it

turns

> out, half the time, my TSH was not properly suppressed- it was at

4

> or above! I have not had any Tg tests in over two years! And no

neck

> physical exams. I obviously knew about the neck exams, but didn't

> find out about the blood tests until I started taking a stand in

my

> treatment when she wanted to lower my meds again. I told her no

and

> asked what my results were. They were suppressed right where they

> were supposed to be.

>

> Now that I realize my Doctor knows nothing about TSH suppression

or

> follow up of ThyCa, I want to find a new doctor, but have no clue

> where to look or what to look for. I'm slightly worried as I have

> had a persistant sore throat for about three weeks now, but don't

> know if I am over reacting or not.

>

> I'm half way just frustrated because I'm only 20 and spent the

last 4

> years of my life not feeling up to par because of my meds not

being

> right ever and always wondering about my cancer because i never

had

> the RAI and now even more because the only blood work hasn't been

> done. None of my friends have to worry about this. I waste half

my

> life away worrying and I just kinda am sick of it. This was NOT

the

> cancer to have as so many of us have heard. UGH.

>

> OK I am sorry this has gotten so long. This intro was supposed to

be

> short. That is the basis of my med history with ThyCa though.

Any

> advice is more than welcomed on the Doctor situation. Otherwise

it

> is just great to be with people who have been there too. Oh yeah,

> I'm in the St. Louis, MO area. Thanks for your time!

>

> ~

> chevil38@h...

[Guest guest]

Hi

It's nice to hear from more people my age here on the list. I'm 20 as well,

was just diagnosed in February.

I would definitely be seeking out a new endo... maybe someone on here, or in

the support group near you, would be able to tell you of a good one to go

to! It doesn't sound like your treatment has ever been up to where it should

have been :/

The first thing I would do is, like you plan, insist on a tg test... and

talk to any new doctor you get about doing a scan. Even thought your tumor

was " small " , it seems to me you should still have gotten some dose of RAI.

You never know if there are microscopic bits of cancer lurking in their that

the doctors can't see.

I admire the way you are standing up for yourself and your health Best of

luck to you in finding a new doctor!

New and Kind of Worried

> Hello Everyone!

>

> I'd just like to say hi and introduce myself. I'm new to this board

> but not exactly new to ThyCa.

>

> I was diagnosed with Papillary variant of ThyCA in 1998 when I was

> 16. I underwent a TT with two tumors (one benign-5cm; one malignant-

> 8mm). My endo decided at the time that the cancerous tumor was not

> large enough for RAI, so to this time I have received no RAI.

>

> Two years later I was released to see just an Internal MD and I just

> blindly trusted that I was being followed up correctly. As it turns

> out, half the time, my TSH was not properly suppressed- it was at 4

> or above! I have not had any Tg tests in over two years! And no neck

> physical exams. I obviously knew about the neck exams, but didn't

> find out about the blood tests until I started taking a stand in my

> treatment when she wanted to lower my meds again. I told her no and

> asked what my results were. They were suppressed right where they

> were supposed to be.

>

> Now that I realize my Doctor knows nothing about TSH suppression or

> follow up of ThyCa, I want to find a new doctor, but have no clue

> where to look or what to look for. I'm slightly worried as I have

> had a persistant sore throat for about three weeks now, but don't

> know if I am over reacting or not.

>

> I'm half way just frustrated because I'm only 20 and spent the last 4

> years of my life not feeling up to par because of my meds not being

> right ever and always wondering about my cancer because i never had

> the RAI and now even more because the only blood work hasn't been

> done. None of my friends have to worry about this. I waste half my

> life away worrying and I just kinda am sick of it. This was NOT the

> cancer to have as so many of us have heard. UGH.

>

> OK I am sorry this has gotten so long. This intro was supposed to be

> short. That is the basis of my med history with ThyCa though. Any

> advice is more than welcomed on the Doctor situation. Otherwise it

> is just great to be with people who have been there too. Oh yeah,

> I'm in the St. Louis, MO area. Thanks for your time!

>

> ~

> chevil38@...

>

>

> 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]

Hi !

Welcome to the group!! You've been through a lot for someone your age -

I thought it was tough having a TT in my early 20's, I couldn't imagine

how difficult it must have been at 16. No one should have to deal with

cancer, but I think its particularly hard at a young age. During your

teens and early 20's you're supposed to feel invincible and having a

cancer diagnosis really throws you.

I relate to what you said about being labeled " strong " because that

happened to me. My parents were there for me as best they could, but my

Mom is a real cancer-phobic - no matter what I or my then endo told her

she was convinced I was going to die - I swear I think she went coffin

shopping!!! I also remember just coming out of the recuperation room

after the surgery and trying to talk to my best friend about the " cancer "

diagnosis and she told me not to use that word. I realized they were all

having a really hard time dealing with this and ended up trying to

reassure everyone else so that all thought I was so " strong " . Meanwhile

inside I was TERRIFIED!!!! That " strong " label is really hard to shake,

so do what you can now to open yourself up to others.

Get yourself a new endo ASAP. If you can't get a personal referral

trying calling the best hospital in your area and see if they have a

reference list. Because I was improperly followed up, I ended up having

RAI this past March (when my Mom went coffin shopping again!!) - over ten

years after my TT!! At least now though I have an endo I trust, and I

know I'm in a better position to monitor for any possible recurrence.

Just keep learning as much as you can about thyca - unfortunately this is

a cancer where to some extent we have to be our own doctors. This group

is an awesome source of information and, just as importantly, emotional

support. You sound like a very intelligent young woman with a good head

on your shoulders who has been thrust into the world of thyca. At your

age you should be worrying about boyfriends and your future and going out

partying, not what your TSH and TG levels are, but unfortantely here you

are. Sometimes life sucks. I hope you can find some comfort here in the

knowledge that you are not alone on this journey anymore. Please ask any

questions you have at all, and please don't hesitate to post your own

thoughts, feelings, and advice - we need to learn from you too!!

Keep hanging in there!

- Gayle

North Salem, NY

TT 1990

RAI (125) 3/15/02

> Hi Pattie,

>

> Thanks for taking the time to talk a bit to me. Yes, its been a kind

> of rough past 4 years. I know I complained a bit of having to live a

> different life than my friends, but it has also helped me learn a lot

> about life, so I guess I can't complain about everything. Something

> really can make you stronger. Just why its got to be the tough

> things, I don't know.

>

> As for support, well, there isn't much. My parents of course are

> always willing to help. They know what is going on medically as do

> most people. I am willing to talk openly about the medical side of

> this. When it comes to sharing how I personally feel about it, I keep

> very much to myself. I've been through some very low times in the

> last 4 years, but keep it all inside, because so many expect me to be

> strong. I know that really sounds stupid, but its nothing but the

> truth. I do have a very supportive boyfriend that I talk to about

> most of this, but I am trying not to go too in depth most the time,

> because he wasn't around during everything and I don't want to scare

> him.

>

> As for my Doctors. An Endo dx'd me and did my surgery. I followed up

> with her for two years or so and then was released to a regular

> Internal MD. This is when the " unsatisfactory " care began. No hard

> feelings, I really liked the Doctor, I just feel she was not well

> experienced in following up ThyCa.

>

> I do want to be sure to find one that will work with me to make sure

> that I am always at my healthiest. I am working on finding a new

> regular doctor and an Endo also. My first goal is to get a Tg test

> done, just to finally feel like I am being properly monitored. I

> have one more bloodwork at the end of this month with the old Doc. I

> will try giving her one more chance and asking for a Tg test just to

> see. Perhaps I can get somewhere with her.

>

> Thanks again and nice to meet you!

> ~

>

>

>

> 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]

, I too am only 25 and realize how scary this cancer thing can be. I was

diagnosed in 2001 and knew nothing!! I did not even know what purpose your

thyroid served. Stay on this message board and you will learn endless

things. These people are a great bunch. Stay on top of everything and you

will do fine. Always go with your gut. You will know when you find the endo

or doctor that is right for you. Many of us did not get it right on the

first try. Best Wishes, from CT

[Guest guest]

Hi Donna,

Its nice to meet you and thanks for the welcome. I am very sorry to

hear of your recent diagnosis. This can be such a tough time, but you

can get through this. As tough as this is for the whole family right

now, use this to come together and be strong together. You all

understand how eachother is feeling and can comfort eachother that

much better that way.

You are right, on the days we feel better it is easier to forget. I

hope that you have an easy hypo period and a clean scan and get on

the way to feeling great soon. I'll be thinking of you.

You too can email me anytime, or pass it onto your daughter. It is

always great to have someone to talk to that understands.

~ chevil38@...

dx 4/98 Pap ThyCA/TT - No RAI yet

[Guest guest]

Hi =)

Nice to see a fellow 20 year old! Thanks for encouragement and

advice. In the back of my mind I've always felt that I should have

had some sort of scan or RAI, and would like to discuss that with a

Doctor also. Its just so much when for the last 4 years I've tried to

move on. I'm sure you understand having just been thrown into this

also.

Its nice to meet you and hope to talk more in the future!

~ =)

dx 4/98 Pap ThyCA/TT - No RAI yet