Re: Hello Group

October 24, 2002

--

Welcome to the group.....

You have good instincts--follow them.

In the olden days--when I was first diagnosed (20 years ago) the

procedure was to remove the tumor, suppress the remaining thyroid

with medication, and watch. That is not now the standard of care.

Unfortunately, some of the physicians who are not up on the latest

treatment for our unusual form of cancer still treat that way.

Definitely, you should have a second opinion, preferably from a

thyroid cancer specialist--either an endocrinologist or a nuclear

medicine MD who specializes in thyroid ca.

The good news is that your form of cancer is highly treatable.

Please avail yourself of all of the information on the thyca.org

website and keep " listening in " and asking questions on this list.

This group is a wealth of information and support. You are not

alone--and frankly, some of the folks on this website are more

knowledgeable than some of the physicians that we come in contact

with.

Write anytime.

Colly

pt: 1981 (Pap Ca, 6 nodes involved),

pt:2001, tt:2001 (Recurrent Pap ca)

RAI 159 mci 1/02

Synthroid 200 mcg

October 24, 2002

Hi ,

I hope that more people write in and share their experiences of having had a PT

(partial thyroidectomy) and very soon after, ended up having to have a TT (total

thyroidectomy) because of thyca being found in the pathology sample after the

first operation.

When I first joined this listserv, that was one of the things that " blew me

away " because there were so many people who had had two surgeries. I'm fortunate

in that my cancer was found on frozen section while I was in surgery, so only

one surgery for me. :-)

As and Colly have said, I too, encourage your instinct to get a second

opinion and think about completion thyroidectomy (TT). Thyca in the US is most

commonly followed by an endocrinologist who works with a radiation oncologist.

It is an unfamiliar cancer to most oncologists. We are special. :-)

Go with you gut, especially since the lump under your chin is of concern to you.

I recently went with my gut and cancelled lithotripsy. By the time I finally

went for it, I had bilateral surgeries. Had I not gone with my gut instinct that

something just wasn't quite right, I would have ended up having two surgeries

instead of one.

While no one wants another surgery, as there are always risks of other things,

i.e., hypoparathyroidism, it increases your chances for a long and successful

thyca journey. I have found that hypoparathyrioidism has been a small price to

pay for having survived thyroid cancer for 37 years.

Keep asking questions and someone here will help. This is the most amazing group

of giving, caring individuals I've ever found and I'm on several listservs. ;-)

in Canton, OH

1965 TT P/F thyca &

Hypoparathyroidism

> My name is I was diagnosed with a follicullar varient if papillary

carcinoma on Sept 23 after having surgery to have my left lobe removed because i

had a 9-17 mm mass. Thay did a frozen section during surgery and i was told

that the mass was not cancer which i was very glad. Upon returning to the doc to

get my stitches removed he tols me that they had found cancer on the rest of the

lobe that was sent for a biopsy. As of right now my doctor doesn't want to do

any kind of treatment he just want to monitor my levels and if they change he

want to go back in and take out the other lobe. I do not feel good about that at

all cause i have a lump under my chin that no one has addressed that is the

reason i went to the doc in the first place. I am going to see the oncologint on

Nov. first. I am kinda scared but i want a second opinion and i want the lump

examanied. Has any one else been told by there doc that he didn't think they

need treatment right now? I don't think that it is right. thanks for listening

October 24, 2002