Re: New member Elaine

[Guest guest]

There's a yahoo group called Thyca that is just for those of us who

have thyroid cancer, or had thyroid cancer. My thyroid was removed

in November 05 and after removal the papillary cancer was found.

Over on thyca you will get all the information you need and then

some, and the support of others who have gone through the same

thing. They have a seperate website at thyca.org. From there you

probably can find the yahoo email group.

First advice, you want a surgeon who does 5 or more removals a

week. Removing the thyroid is not a simple operation, there are

many nerves and veins to work around. If the vocal nerve gets

damaged, there can be loss of voice to damage to voice. If the

larynx nerve gets damaged, people with that have had to teach

themselves the Heimlich manuever cuz food easily goes down the wrong

pipe. If the parathyroids get damaged, they supply calcium to

bones, you will have to contend with taking replacement calcium and

the life threatening serious problems that go along with low

calcium. You have time to cancel the surgery if need be, to find a

surgeon that is experienced and you are comfortable with. Thyroid

cancer grows slow, so a couple weeks to a month won't make a

difference. If the surgeon proposes to take out only one lobe

first, or leaves a thyroid remnant, that's because they haven't had

enough experience and are concerned of damaging something. You want

it all to come out in one operation.

You will get a more balanced view of what life is like after thyroid

cancer, on the Thyca group. It varies from person to person. Some

people just jump back into life as normal. Some are still

struggling after a year of getting back to optimal speed.

After the removal (tt) you will have a radioactive iodine treatment

(rai)to kill any remaining thyroid tissue/cells (cancer loves them)

and any remaining cancer cells. You have to be isolated 4 days or

more when radioactive so not to contaminate other people or pets.

How long depends on the dose of rai given you. The dose depends on

how invasive the cancer was. To do rai, you have to go low thyroid

hormone, hypothyrod. That can be the hardest part. That can just

zap you of energy. Between tt and rai, it is good to go on Cytomel,

it is a T3. It will help you have energy as your T4 drops. 2 weeks

before rai, you go off Cytomel. Those who don't do Cytomel suffer

the most.

Have an endocrinologist on board now. Have appts with him for

immediate follow up after the operation. The surgeon should just

check the incision. Some surgeons do follow up, thinking they can

do it, but the patient ends up in more agony than needed. Shop for

an endo, find one you are comfortable with. It was important to me

that my endo tested the Free T's, and took into consideration how I

said I was feeling, not just the lab numbers. The endo should do

your follow up care - the rai, the whole body scan, the Cytomel,

eventually going on the synthetic T4 med.

It takes 6 to 8 weeks for you to start to feel the effect of the T4

med. It takes that long for the body to get the message that the

hormone is there to use. Then your dose most likely will be

changed, and it takes another 6 to 8 weeks for the same thing. I

currently am on week 7 on meds, first time for me. Personally, I

still am pretty much wiped out. Really wiped out. I expect my dose

will be increased. After rai and while going on T4 meds it still

helps to do Cytomel, the T3 med. You will have energy then.

Either before or after the rai you will have a whole body scan

(wbs). Some docs order them before the rai to determine dose of rai

to do. Some docs do it after rai. It mostly serves as a baseline

so future wbs's (done yearly) can show if anything has changed, for

the better or worse.

Eventually, if meds get optimal, fatigue should lift. But it also

takes time for the body to heal from all the trauma of whacked

thyroid and hypothyroid for rai. As I said, some people just bounce

back, some still struggle after a year.

This is my slant on things. It will really be helpful to be in the

thyca group and get many other people's takes on all things thyroid

cancer. You will learn soooo much. There is more than what I've

said here. Knowledge is power.

There also is a thyca group to deal with the emotional side of going

through all this.

jane

>

> Hi folks,

> I was diagnosed with Thyroid Cancer on Friday.

> What is life like after Thyroid cancer?

>

> I will have surgery on Feb. 16th. Any advice?

>

> I'm more concerned about what to expect after surgery? How I will

feel

> after having my thyroids removed, how will the synthetic

medications

> work?

>

> I've struggled with sore throats, chronic ear aches, infections,

> fatigue and more fatigue. I'm hoping that after the surgery and

the

> radiation treatment that I can be more energetic and stronger.

Has

> anyone have any success stories to share regarding Thyroid

cancer.

>

> Thanks,

> Elaine