I'm new

September 17, 2002

Hi ,

> I registered on this site a few days ago and have been reading the

> tons of e-mails sent by all of you out there

> When I read your e-mails, I have such mixed emotions. Makes me

> anxious in some ways, consoled and relieved in other ways. ...(snip)

Welcome. I can understand how you're feeling. The diagnosis of

cancer - even a " highly treatable " one like pap thyca - is not

something to be taken lightly. You've taken an important step in

joining this group and starting to read up about it. It can be

disturbing at first, because you think that everything that has

happened to other people might happen in your case, too, but that old

saying " knowledge is power " is really true here. The more you know,

the better you will be able to communicate with your doctors and feel

" in charge " of your problem.

If it's any reassurance, I've been around for 37 years since my

thyroid cancer was first diagnosed, aged 15, and there are many others

around who have similar stories to tell - and that in spite of the

fact that there was far less know at that time about how to treat

thyroid cancer effectively. It may not feel like it right now, but

your doctors are probably right, and you most probably will grow old

and die of something unrelated to thyroid cancer.

> Everything takes at least two weeks. Every darn step in this process

> takes a lifetime. I can't believe how awful the waiting and not

> knowing is...(snip)

Even countless years on I still remember the waiting and not knowing

as the most awful part. And it is the same with other illnesses I've

experienced since - my own, and others in the family. It's one big

waiting game. It is a challenge to keep all those negative, brooding

thoughts I've learned to call the " mind gremlins " out of the way. I've

learned that keeping busy and active and learning to focus on other

things can help. Working out at the gym as you're doing can be a

great help in refocusing and beating the mind gremlins.

> Total thyroidectomy on April 19. RAI procedure early June, body scan

> showed nothing outside the thyroid. I don't yet understand all your

> terminology, but I go back on September 26 for a checkup. I know so

> much more now than I did then, and I am not too scared, although I

> get anxious sometimes because my body isn't the same as it was

> before the surgery. But the changes are minor.

>

> My scar has healed pretty well. I am pleased with the progress. I

> always say if that's all I have left of this journey, I will wear it

> proudly forever!

From the sound of it you've already made great progress! It is as you

say a journey. We are none of us sure exactly where it will take us.

But at a certain point we can look over our shoulders and say " gosh I

made it to here, from there... "

> I am taking 150 mcg. of Synthroid. My TSH was between

> 3 and 4 when I went to the doctor on July 20, and he increased my

> dosage from 125 to 150.

Sounds like the right move. As you've probably read here, most of us

are suppressed to TSH = <0.1. Some of us need more thyroxine to

achieve that, than others. My dose is 200 mcg.

> Since then, my hair has been thinning (no clumps are falling out)

> gradually. I am scared about losing my hair.

Hmmm...sounds to me as if this could be a residual effect from going

hypo for your RAI treatment, and with a TSH of 3.0-4.0 you are still

basically hypo. It should come back, once you're on the right dose, in

my own experience.

> Also, I am so hungry all the time, I find myself trying to keep

> something in my stomach, because I have this strange sensation that

> is unpleasant, but not painful when I have hunger pangs...(snip)...

> During the time between my surgery and the RAI, I had TERRIBLE

> stomach problems. Acid reflux, constipation, stomach pain, a

> gigantic lump-like sensation in my throat (the non-cancerous kind!).

> Ended up taking Prevacid which helped. Now it seems like my symptoms

> are mixed (only very minor stomach problems, but still occasional

> lump in the throat sensation).

I have to pass on this one. Constipation can be an effect of going

hypo, but I don't recognise the other symptomsas being thyca-related,

maybe someone else can jump in here.

> After having worked very, very hard

> for the past two years to lose nearly 100 pounds, I have recently

> gained about 10 pounds, and I am so frightened I won't be able to

> continue losing. I need to lose about 40 more pounds to reach my

> ideal weight.

It's not unusual to gain weight when one is hypo. Getting it off

again can take some persistence, but it sounds to me as if you have

that!

> When I was first diagnosed, one of my doctors told me that taking

> thyroid medication would make it EASIER to lose weight.

I don't think he should have said that. Thyroxine is NOT a slimming

pill. Some people even find that they feel more hungry and have a

tendency to GAIN weight if the dose is on the high side.

> Do you think my dosage is too high?

By the sound of it, no - if your last TSH was 3.0-4.0 then it sounds

as if your doc was definitely right to increase your thyroxine. This

is one of the frustrations of thyca - it takes time to get the dose

exactly right. It takes six weeks to kick in so you will need to get

your TSH measured around 6-8 weeks after the last adjustment. And then

it might need adjusting again. But you'll get there in the end!

> I also still have a little tickle in my throat

> when I yawn that makes me cough a little. Anybody else experience

> that?

Personally no, have you asked your surgeon?

(snip)

> I'm 44; papillary cancer - I'm scared to find out what stage it was

> so haven't asked, but my radiologist said my margins were clean, no

> evidence of spread anywhere beyond the thyroid. He said he was

> 99.9999 percent sure this wouldn't be what kills me. Do you all

> think it is OK to assume I'm going to be fine?

>

> Will my hair grow back? Will my appetite level off so I can continue

> to lose weight? Most of all, is there anybody out there willing to

> reassure me that they are pretty sure I will be healthy for a very

> long time? Please don't tell me if you think my cancer will recur. I

> just don't want to know. I have a seven-year-old little girl, and I

> absolutely have to see her grow up - period.

Don't be scared to ask next time about the staging. It will probably

be reassuring.

In answer to your three questions - yes probably; yes hopefully but

you may need to work on it; and yes-yes-yes.

In answer to the last part - it would be wrong for me to give you that

complete reassurance that it will never recur, ever. That is why

thycans are advised to have life-long check-ups. I wish I had known

that 37 years ago - I was discharged after 10 years, and I did have a

recurrence after 17 years , but that was because my initial treatment

was " incomplete " (no TT and no RAI), and in my case it has not come

back in the 20 years since RAI.

> Sorry to spill my guts. But I've been holding a lot of this in for a

> long time - seems like years even though it's only been a few

> months.

No need to apologise, spilling your guts is exactly the right thing to

do and especially here!

> Also, why is everyone talking about LID? What is it? I didn't have a

> special diet before my RAI. Should I have been eating only certain

> foods?

LID = low iodine diet. It is quite puzzling, as the LID has been

around for a long time, that some doctors in the States seem not to

know about the LID or for whatever reason don't recommend it to their

patients. It is standard to the protocols followed here in Holland

and my former doctor even published papers about it way back

in...1974. The idea of following the LID before RAI is to starve any

remaining thyroid cells of iodine so that the cells take up the RAI.

so, ideally, yes, and if you are going to be scanned regularly then I

and most others here would recommend it in the future. Check out the

ThyCa website at http://www.thyca.org and also look out especially for

posts about LID from (=katiekabob) and Ian Adam.

> I have a feeling I'm about to make a whole lot of new friends

Hope so too!

Good luck and best wishes,

Judith (in Holland)

dx 1965 pap thyca T4-N1-M0

pt London, England 1965

recurrence 1982

tt / rai The Netherlands

September 17, 2002