Re: update and other things --> .

[Guest guest]

update and other things..............

> The surgeon also said he spoke w/the endo. and the endo. said that with

this small amount of cancer found, no RAI is necessary. That is fine for me

for the most part, but I Just need to get these meds fixed.

>

> But, he said that my primary might feel comfortable enough in adjusting

my meds, which I hope he does, but if not, that's fine. I at least want to

see him so he knows about what I've been going thru these past few weeks.

>

> --

> PT 1/30/03 (98% removed!!),

> 7 mm. papillary cancer found in right lobe,

> right lobe 10x larger than normal and left lobe 4x larger,

> 100 mcg. levoxyl and thinking I might need some more soon!

>

,

I think many of us here would urge you to find a good endo who has

experience with thyca. S/He does not have to be in your neighborhood -- you

don't see the endo all that often! Some people travel quite a distance for

these consultations. (You don't mention if the jerk has thyca experience

anyway, aside from his " bedside manner " .)

You should have a thyca-experienced endo explain the pros & cons of (not)

having RAI ablation with your particular situation. Treatment is not

something that we " have " or " get " to have or not have, it is something we

" decide " to have/not have based on our particular medical situation and risk

tolerance.

You may also benefit from a second opinion on whether or not treatment would

be a good idea for you. You say not having it is " fine " with you but only

" for the most part " , and don't sound overly confident in the endo's opinion

(even a jerk can have a valid expert opinion, but I don't know about this

doctor's experience or outlook or results with other patients). I don't know

what the prevailing wisdom is on small tumors.

I think others have already mentioned that it takes 4-6 weeks for the T4

meds (e.g. Levoxyl) to stabilize in your blood. Testing too soon would give

a false picture. After my treatment I started on 125mcg, and a couple of

months later the dose was changed. Meanwhile, even though I was starting to

feel better over those weeks, I wasn't feeling " normal " until a few weeks

after the increase to 150. It can be a slow and frustrating process.

Don't forget, either, that you are barely post-op, and your body is still

recovering from the shock of surgery. You do still have some thyroid

remnants, which may be going to contribute some hormone when they settle

down a bit!

You may want to be sure that your primary gets copies of your treatment, lab

tests, pathology, etc. from the other doctors involved -- just ask them to

send him the copies directly, this is a common practice. In fact, my primary

called me when she got a copy of my TT pathology report, to be sure I

understood what it said and that there were plans to follow up on the cancer

diagnosis. And if you are going to have your primary deal with the meds

issues, be sure he knows what the goals are -- it's not just " how you feel "

as it would be for a non-cancer hypo patient! (How much does your primary

know about thyca, for that matter?)

and in another message you mention ....

>The concerns I have right now is the remaining thyroid tissue that is left

and I'm wondering how common it would be for cancer to be there too?

>

I think this is one reason for having the ablation -- to be sure to zap

whatever may be lurking around, as well as kill off any thyroid cells that

might decide to " misbehave " ! Plus, there are followup methods that are only

useful if you have had ablation.

There is, unfortunately, more to post-thyca-TT followup than getting meds

adjusted. There's that pesky lifelong monitoring!

bj