Re: I am scared and confused

March 15, 2002

I can't help you a whole lot because I am new also. But since you are so

new, I wanted to let you know that Yahoo groups will be offline this entire

weekend and not be alarmed if you do not get a lot of responses to your

post.

TT 12/13/01

Follicular variant of papillary

carcinoma 1.3 cm and a 2nd pap carcinoma

.5 cm.

Currently going hypo for 1st scan.

I am scared and confused

I have recently been diagnosed with Thyroid cancer (papillary), and

am totally confused and very very scared. I keep getting lot of

information, but my mind keeps going round in circles. Now every time

I cough or even sneeze I think something is terribly wrong.... I just

need to know what to expect and when. I am scheduled for surgery

sometime in April and quite honestly am terrified.

Please help.

March 15, 2002

I understand how you feel. I felt the same way when my Thyca was found by

accident in May, 2000. I can tell you from my experience that what was in

my mind was much worse than the actual experience. I had two thyroid

surgeries and they were not very bad at all. The recovery from the surgery

is not so bad, it is how you feel physically without a thyroid that is

horrible. After a while your thinking improves and you don't think you're

going to die any minute. Mine was almost two years ago and I had a clean

scan last year and am getting ready to be tested again in May. If this scan

is clean again, we may be able to skip a year and not do it again for two

years. Don't get me wrong, it is a life changing experience, but one that I

have come to be able to tolerate. I just take one day at a time, only do

what I have to do, and I don't waste time on things that don't matter. I

don't get upset when I have to tell people (family, coworkers) when I can't

make it to something I said I would attend (for example) because I don't

quite feel up to par. I figure they'll just have to get over it (even if it

is Easter Sunday as it was last year!) They survive and you survive.

It is certainly a scary experience, especially the first time you have to go

for RAI. But it's not as bad as you imagine it will be once you've gotten

through it.

Feel free to ask any questions you need to and hang in there. God bless.

I am scared and confused

I have recently been diagnosed with Thyroid cancer (papillary), and

am totally confused and very very scared. I keep getting lot of

information, but my mind keeps going round in circles. Now every time

I cough or even sneeze I think something is terribly wrong.... I just

need to know what to expect and when. I am scheduled for surgery

sometime in April and quite honestly am terrified.

Please help.

March 15, 2002

I was terrified when the doctor told me I had cancer. For me, everything

was OK after I realized that I was going to live. And so will you. You

will survive the surgery and the radioactive iodine treatment and taking a

pill a day for the rest of your life and the annual scans. Along the way,

you'll feel crappy and you'll be depressed. That's OK.

You've already taken care of the most useful step and that was joining this

group. You'll learn about all aspects of this disease. The surgery was

pretty easy for me. It was nerve wracking waiting for them to take me from

my room to the surgery. I remember waking up and wanting to throw up but I

didn't. The next time I woke up, I was in my room. They tried to get me

to use a bedpan but I just couldn't do that (I couldn't get over the

feeling that one doesn't pee in bed). So, within hours of my surgery, I

was up and going by myself to the bathroom. That turned out to be a real

good thing because they had a saline IV on me turned on high. I had to go

to the bathroom every hour. The nurses only came around every couple of

hours. When I woke, I had a drain in my neck. Thank goodness that they

talked about that on this list. I think that would have shocked me,

otherwise. My surgery was on a Friday and I was released on Sunday after

the doctor took out the drain and the bandages. I left with steri strips.

Other than feeling like my head was going to fall off (it didn't hurt

though), I felt really good.

Hope it turns out as good for you. Ask if you have any questions at all.

Betty

mailto:bettyy@...

At 8:14 PM +0000 3/15/2002, swati_d wrote:

>I have recently been diagnosed with Thyroid cancer (papillary), and

>am totally confused and very very scared. I keep getting lot of

>information, but my mind keeps going round in circles. Now every time

>I cough or even sneeze I think something is terribly wrong.... I just

>need to know what to expect and when. I am scheduled for surgery

>sometime in April and quite honestly am terrified.

>Please help.

>

March 15, 2002

> I have recently been diagnosed with Thyroid cancer (papillary), and

> am totally confused and very very scared. I keep getting lot of

> information, but my mind keeps going round in circles. Now every

time

> I cough or even sneeze I think something is terribly wrong....

Hi my name is Judith, I too was diagnosed with papillary thyroid

cancer. I was only 15 years old - that was nearly 37 years ago. I

now have two children and a busy working life in publishing which

takes me all over the world. There are several others on the list who

were diagnosed more than 30 years ago and many many more not on this

list who've dealt with it and are just getting on with their lives. I

hope you can take courage from this.

You must be feeling very overwhelmed, but asking questions and arming

yourself with information is the first step to coping.

> I just

> need to know what to expect and when. I am scheduled for surgery

> sometime in April and quite honestly am terrified.

> Please help.

The listserv is closing down for the weekend and you might not get

much support initially, but you could try the following websites - and

then come back with questions next week. There are some very well

informed people on this list who can help you better.

See information for the newly diagnosed at:

http://www.thyca.org

The New York Thyroid Center has an explanation for patients about

what

thyroid surgery involves - See:

http://cpmcnet.columbia.edu/dept/thyroid/

Hope this helps,

Good luck and best wishes,

Judith (in Holland)

dx 1965 T4-N1-M0 pap thyca

March 15, 2002

Dear swati_d (could we please know your name?)

Being scared and confused is perfectly normal when first diagnosed.

Every one of us on this list has been there, done that! You have come

to the right place to get the facts, the true facts! I remember

writing my surgeon when first diagnosed that I thought even my hangnail

might be malignant! Please remember that this disease is very slow

growing and very controllable. The big " C " also stands for

controllable!

It is very difficult to try and incorporate all that comes at you in

the early weeks and try and make sense of it. It is totally frightening

to all of a sudden have to understand the new language of thyca and

what it means to your body. What you need to expect will be discussed

here on the list daily. If you read the web site at www.thyca.org you

will be able to read all the questions you need to ask in the newbie

section and what is ahead in your treatment. The surgery usually is a

rather quick recovery with very little pain associated with it. The

incision is made in the fold in your neck so it won't show after it

fades.

I have been a patient for 34 years. I had 3 children under the age of 5

when diagnosed. Today I have 5 grandchildren. The journey with thyca,

though not in my original plans, has been a good one!

We're all here for you....no one is going to let you face this alone!

Best wishes,

Gail

dx: 1968, TT, pap. & foll. well differentiated w/hurtle cell, RAI,

rad.neck dissection,lung surgery, hashimoto, recent tg antibody

575, iodine resistant,existing thyca nodules in lungs.

Last surgery 1972

> I have recently been diagnosed with Thyroid cancer (papillary), and

> am totally confused and very very scared. I keep getting lot of

> information, but my mind keeps going round in circles. Now every time

> I cough or even sneeze I think something is terribly wrong.... I just

> need to know what to expect and when. I am scheduled for surgery

> sometime in April and quite honestly am terrified.

> Please help.

March 15, 2002

I, like you, have been recently diagnosed with Thyroid Cancer (papillary). I

had a TT a week ago last Tuesday. My doctor discovered nodules last December

and I was given the option of surgery or waiting to see if nodules became

larger. (my ENT doesn't believe in FNA's) Needless to say, I'm glad I had the

surgery. Please feel free to email me and I will tell you about my TT. This is

all so new and scary for me, too and I will be starting RIA in May and have a

ton of questions for everyone. Hang in there and hope to hear from you.

PStobie@...

I am scared and confused

I have recently been diagnosed with Thyroid cancer (papillary), and

am totally confused and very very scared. I keep getting lot of

information, but my mind keeps going round in circles. Now every time

I cough or even sneeze I think something is terribly wrong.... I just

need to know what to expect and when. I am scheduled for surgery

sometime in April and quite honestly am terrified.

Please help.

March 15, 2002

Hi , my name is and I too have papillary cancer. I had my thyroid and 1

lymph node removed on Jan. 16th 2002 and was told when the results came back

that it was cancer what a shock for me since the needle biopsy was neg. prior to

this. I went without meds for 5 weeks in preparation for RAI ( radioactive

iodine treatment) and now have had that done last Monday. I know how

overwhelmed you must feel but know that we are here for you and will answer any

of your questions. I am 37yrs old with 2 children and believe me this WASN'T in

my plans. I still have some very emotionally bad days but am trying to stay

positive as this disease has a very high cure rate. Will that's my short story

if you need to talk just call. RENEE

I am scared and confused

I have recently been diagnosed with Thyroid cancer (papillary), and

am totally confused and very very scared. I keep getting lot of

information, but my mind keeps going round in circles. Now every time

I cough or even sneeze I think something is terribly wrong.... I just

need to know what to expect and when. I am scheduled for surgery

sometime in April and quite honestly am terrified.

Please help.

March 16, 2002

Hi there! I know how you are feeling.I know how overwhelming everything can

be. I was dx with papillary cancer.Here is a little information(well maybe a

lot) about myself and a detailed surgery letter I sent to the group. Sorry it

is so long. I hope it helps ease some of your anxiety.

> Hi I'm ! I live in West Virginia. I'm married and have two children (

> boy 5 1/2yrs and girl 2yrs).My Gynecologist found an enlarged thyroid and

a

> nodule on Nov.30,2001. Since then I had blooodwork(they said was fine),the

> scan(which revealed a cold nodule) ,a biopsy(which came back suspisious),

and

> surgery on Jan.21,2002(which resulted in total removal of my thyroid

because

> of Cancer). Before the

> surgery I was scared they would find Cancer and scared about losing my

> voice(which is perfectly fine).Now I'm waiting to go in the hospital for

the

> radioiodine and scared again. I'm not sure what to expect, and of course I

> forgot to take all my questions and couldn't remember a single one to ask.

> That's what led me to look on the internet for a support group. We had

a

> horrible January starting with my husbands grandmother passing away(the day

> before my surgery,but my husband didn't find out until he called his mom to

> tell her about my Cancer.He got a double whammy),my surgery/Cancer,car

> trouble to both vehicles (which means we can't get to our family,they live

in

> PA and FLA. No family here in WV) and my Aunt passing away,a week after my

> surgery.Needless to say we are alone in a sense.To top it all off my

husband

> thought the Dr. told him it was pre-cancer after my surgery and thats what

my

> husband told me when he saw me after surgery. When I went in to see the

> surgeon 4 days later,to get the staples removed,he told me it was Cancer.

It

> was like hearing it for the first time again. My husband was so out of it

he

> didn't hear it right.One good thing was that our pastor stayed with my

> husband during the surgery.I was so thankful when he told me that cause we

> had no family able to come, but we had lots of prayers and support sent

from

> family.We have some friends but I feel the need to have family closer.

> Yesturday and today I have been on an emotional roller coaster.My phone

bill

> will be outrageous.Yesturday was when I found out I need to go in the

> hospital again for the treatment because of not wanting to expose my kids.

My

> husband is having trouble coping with fact he can't be there with me.It's

> only 2 days but we weren't sure he could be there with me then come home to

> the kids.We guess not.Everything is taking a toll on us. All i want to do

is

> cry but I want to stay strong. When I found out I needed surgery I came

home

> to tell my husband(he had to watch the kids no babysitter available) I

> started to cry and my son said Mommy I thought you were brave? ( I told him

> to be brave about 2 to 3 weeks before when he was getting an IV for being

> dehydrated) My husband told him I was but I don't feel brave right now.

>

MY SURGERY

> >> ..I had my surgery on January 21 and other than my up and down moods I'm

>> doing fine. Right after I woke up from surgery I felt like I just woke up

>> from a very deep sleep but multiplied. I was a little disoriented at first

>> and the nurse asked if something hurts. When I said " My throat hurts "

>> those precious 3 words told me my voice was ok( I was worried about that

>> even though the surgeon reasured me it would be OK.) The nurse gave me

>> some morphine then some more before I left recovery (which was about an

>> hour I think)I felt a little nauseous and out of it.A weird feeling! I

>> couldn't tell if my throat hurt from the surgery or the tube that they put

>> down your throat during surgery(the nurse told me that they did that) I

>> didn't know that they were going to do that but I didn't feel or remember

>> anything from the time they wheeled me in the OR to when I woke up. I

>> didn't even remember closing my eyes to go to sleep for the surgery. That

>> was weird. It was like someone snapped their fingers and I was out like a

>> light. I had a drainage tube attatched to a small container to collect the

>> drainage (which they empty every now and then).I thought if I moved I

>> would pull the tube out but the nurse told me it was taped in place good

>> and it was taped to what I called my dog collar.LOL ( A loose wrap of

>> taped bandages around my neck)Then under my " dog collar " they had stapled

>> my neck together. I had no bandage on that .It was covered by the collar.

>> I couldn't lift my head up because of being sore.I was in the hospital for

>> 2 days. The 2nd day I could lift my head up from an inclined position only

>> or pull my head up. It makes you feel like your head will fall off.LOL

>> During the 1st few hours after I couldn't get up to use the bathroom. I

>> hate bed pans. When I could get up I got dizzy and then nauseous before I

>> got back to the bed. Never threw up though. It was like that for about 3

>> times that 1st day and then I was OK except slightly dizzy, but no need

>> for help. I was on a liquid diet,Cream of potatoe was my first meal(not

>> the best when you are nauseous),next was cream of chicken and cream of

>> mushroom. They also came with pudding or ice cream and juice and coffee. I

>> was so tired.Sleeping every hour as much as the uncomfortable bed would

>> allow.(ask for an extra pillow to put between your legs/knees, it helped

>> me to finally get a better sleep. I also put it under my knees when I was

>> on my back).The 2nd day they gave me a water basin to wash up. I felt

>> better. Both days they gave me, I think it was a magnesium pill,I forgot

>> what the nurse told me it was for,no effects from it though. I could walk

>> around if I wanted to. Before I was discharged they took the tube out.It's

>> not a good feeling,but it's over kinda quick. I got light headed and just

>> layed down for a little bit. They take the collar off and put a bandage on

>> the incision and tape. Home I went!

>> The first week

>> I layed around and had no energy. Now I know it was the effects of the

>> sleep drug wearing off mostly.My throat was sore for about 1 1/2 weeks

>> because of the tube not the surgery. Eat soft foods, swallowing will be

>> hard that first week. My surgery was Monday and by Thursday I had some

>> energy, Friday had some in the morning not in the afternoon.It's a good

>> excuse to take a nap and do nothing ( at least for the first week). My

>> husband stayed home from work during the day and go in for about an hour

>> at night towards the end of the week(with his work he was able to do

>> that). Have family or friends help you that first week especially if you

>> have kids.My husband was a Godsend cause we have no family here. Our

>> neighbor made us dinner a couple nights too that we didn't expect. That

>> was nice.During this week I felt pressure on my throat but minimal pain so

>> I didn't take the pain medication the surgeon prescribed. DON'T do that it

>> helps with the swelling too. I found that out after I got my staples taken

>> out. It swelled up a little and felt like I swallowed a mable and couldn't

>> stand shirts up against my throat. After I took the pain/anti-inflammatory

>> medicine I felt better. I got the staples out on Friday(didn't hurt but a

>> pinch, I thought it would hurt a lot) The surgeon put tape strips on the

>> incision(by the way it is only about 3 inches and thin.) I thought it

>> would be a big scar. I took the tape off today,Feb.10th, and it is thin

>> and slightly red and completely healed. A friend of mine told me to use

>> the hightest SPF chapstick I could find when the scar heals and apply it

>> to the scar for a year when you go outside(she was told this by her

>> daughters plastic surgeon to stop the sun from bleaching the scar.) She

>> said so far her daughters scars on her chin look almost like her skin

>> color.I plan on trying it.As far as my incision is concerned I healed

>> great and it doesn't look as bad as I thought. The weird part now is that

>> when I swallow I can feel my chest muscles pull up. My thyroid Dr. said it

>> will for awhile,but was normal. Now I am just waiting to go in the

>> hospital for my Radioiodine treatment, in about 3 weeks. I've had a lot of

>> encouragement from this group! Thank you everyone! If you need anything

>> just email me. I hope this helps ease your fears and concerns, and anyone

>> else who reads this too.Sorry it was so long.Let me know how you made out!

>> in WV

>

March 16, 2002

Hi Betty,

Like you I too found it terrifying when the Doctor told me I had Papilliary

cancer, my mind went completely blank, until I heard him say that if you are

unlucky enough to get cancer then thyroid cancer was the best one to get and is

completely curable, but that still doesnt stop you worrying. The surgery sounds

daunting especially around the throat region, but honestly it really is no big

deal, I have had quite a bit of surgery and really don't mind at all, I took a

bolster in hospital with me to support my neck, it was better than pillows,

after the surgery you have drains in, and an iv saline drip, the drains come out

pretty quick as so to the iv, the scar heals very quickly and you are left with

a very pretty 'necklace' but I must say that I was very down a few months after

the op. due to a bit of depression, but I have got over it and am now feeling

fine, summer is on its way!!!.

Good luck and don't worry you will be fine.

UK