Re: to Audra-RE: What are the odds of metastases elsewhere?

[Guest guest]

Hi! Your letters made me laugh. I went to radiology once for an ultrasound

of a node up under my jaw. The tech put the camera thing right where my

thyroid should be and was quite disturbed because things didn't look right.

I reassured the guy that I didn't have a thyroid, hence the big red scar (it

was less than a year after my TT) right by his hand. Needless to say, they

found nothing on the US. Then 2 weeks ago when I had another US of my neck

the tech asked me if I was sure that I had a TT. I said after a partial

thyroidectomy, then a 4 1/2 hour completion thyroidectomy, I was pretty sure

nothing was there except scar tissue. The doctor acted like he didn't want

to perform the procedure and asked me why I was getting an FNA when I needed

an iodine scan. I had to explain EVERYTHING again. He finally agreed to do

the FNA on one node, and proceded to reassure me by saying how close it was

to my jugular and carotid and that he didn't know if he could hit it. He

explained that if he accidently hit one of the major vessels that since they

were using " a very fine needle the blood wouldn't spray " . After all this the

results were inconclusive! I can't believe I pay for this stuff!

Peace, Love and all that Hippie Stuff!

to Audra-RE: What are the odds of metastases elsewhere?

>

> Audra-

>

> I had to laugh at your post. I had an FNA of a small lymph node in my

neck

> yesterday and the US tech appeared clueless! I asked her how my neck

looked

> and she said " Well, once the thyroid is gone, it just kind of looks like

> lots of tissue " . When she finally found the node in question (which is

> palpable), she said " it looks normal " and said she thought the radiologist

> wouldn't even want to FNA it. Then she started questioning why I was sent

> for the FNA in the first place. I stayed as polite as I could and told

her

> that this node is new since my TT in Jan and RAI in Mar and gently

reminded

> her that I had positive nodes at the time of surgery. The radiologist

> thought my node looked normal on ultrasound as well, but decided to FNA it

> only because of the thyca history. I'll have my results next Friday (the

> 27th) when I meet w/ my endo (maybe sooner if he just calls me w/ them).

> I'm so curious. Of course, am hoping it's negative, but will laugh if

it's

> positive as I was treated as if I shouldn't have entered the radiology

dept

> at all yesterday!

>

> Wishing good health to all of us.

>

> Barb

> TT Jan 01

> ~3 cm pap thyca

> RAI 100mCi Mar 01

> working up a neck node now...unsure if thyca

>

> Every

> > time I have had an ultrasound, the technicians are completely

> > clueless as to

> > what they are looking for in my neck. They always have to repeat

> > the test

> > several times and even have the doctors come in to look.

> >

>

>

> For more information regarding thyroid cancer visit www.thyca.org. If you

do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank

email to thyca-unsubscribe

>

>

>

[Guest guest]

Hi! Your letters made me laugh. I went to radiology once for an ultrasound

of a node up under my jaw. The tech put the camera thing right where my

thyroid should be and was quite disturbed because things didn't look right.

I reassured the guy that I didn't have a thyroid, hence the big red scar (it

was less than a year after my TT) right by his hand. Needless to say, they

found nothing on the US. Then 2 weeks ago when I had another US of my neck

the tech asked me if I was sure that I had a TT. I said after a partial

thyroidectomy, then a 4 1/2 hour completion thyroidectomy, I was pretty sure

nothing was there except scar tissue. The doctor acted like he didn't want

to perform the procedure and asked me why I was getting an FNA when I needed

an iodine scan. I had to explain EVERYTHING again. He finally agreed to do

the FNA on one node, and proceded to reassure me by saying how close it was

to my jugular and carotid and that he didn't know if he could hit it. He

explained that if he accidently hit one of the major vessels that since they

were using " a very fine needle the blood wouldn't spray " . After all this the

results were inconclusive! I can't believe I pay for this stuff!

Peace, Love and all that Hippie Stuff!

to Audra-RE: What are the odds of metastases elsewhere?

>

> Audra-

>

> I had to laugh at your post. I had an FNA of a small lymph node in my

neck

> yesterday and the US tech appeared clueless! I asked her how my neck

looked

> and she said " Well, once the thyroid is gone, it just kind of looks like

> lots of tissue " . When she finally found the node in question (which is

> palpable), she said " it looks normal " and said she thought the radiologist

> wouldn't even want to FNA it. Then she started questioning why I was sent

> for the FNA in the first place. I stayed as polite as I could and told

her

> that this node is new since my TT in Jan and RAI in Mar and gently

reminded

> her that I had positive nodes at the time of surgery. The radiologist

> thought my node looked normal on ultrasound as well, but decided to FNA it

> only because of the thyca history. I'll have my results next Friday (the

> 27th) when I meet w/ my endo (maybe sooner if he just calls me w/ them).

> I'm so curious. Of course, am hoping it's negative, but will laugh if

it's

> positive as I was treated as if I shouldn't have entered the radiology

dept

> at all yesterday!

>

> Wishing good health to all of us.

>

> Barb

> TT Jan 01

> ~3 cm pap thyca

> RAI 100mCi Mar 01

> working up a neck node now...unsure if thyca

>

> Every

> > time I have had an ultrasound, the technicians are completely

> > clueless as to

> > what they are looking for in my neck. They always have to repeat

> > the test

> > several times and even have the doctors come in to look.

> >

>

>

> For more information regarding thyroid cancer visit www.thyca.org. If you

do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank

email to thyca-unsubscribe

>

>

>

[Guest guest]

Hi! Your letters made me laugh. I went to radiology once for an ultrasound

of a node up under my jaw. The tech put the camera thing right where my

thyroid should be and was quite disturbed because things didn't look right.

I reassured the guy that I didn't have a thyroid, hence the big red scar (it

was less than a year after my TT) right by his hand. Needless to say, they

found nothing on the US. Then 2 weeks ago when I had another US of my neck

the tech asked me if I was sure that I had a TT. I said after a partial

thyroidectomy, then a 4 1/2 hour completion thyroidectomy, I was pretty sure

nothing was there except scar tissue. The doctor acted like he didn't want

to perform the procedure and asked me why I was getting an FNA when I needed

an iodine scan. I had to explain EVERYTHING again. He finally agreed to do

the FNA on one node, and proceded to reassure me by saying how close it was

to my jugular and carotid and that he didn't know if he could hit it. He

explained that if he accidently hit one of the major vessels that since they

were using " a very fine needle the blood wouldn't spray " . After all this the

results were inconclusive! I can't believe I pay for this stuff!

Peace, Love and all that Hippie Stuff!

to Audra-RE: What are the odds of metastases elsewhere?

>

> Audra-

>

> I had to laugh at your post. I had an FNA of a small lymph node in my

neck

> yesterday and the US tech appeared clueless! I asked her how my neck

looked

> and she said " Well, once the thyroid is gone, it just kind of looks like

> lots of tissue " . When she finally found the node in question (which is

> palpable), she said " it looks normal " and said she thought the radiologist

> wouldn't even want to FNA it. Then she started questioning why I was sent

> for the FNA in the first place. I stayed as polite as I could and told

her

> that this node is new since my TT in Jan and RAI in Mar and gently

reminded

> her that I had positive nodes at the time of surgery. The radiologist

> thought my node looked normal on ultrasound as well, but decided to FNA it

> only because of the thyca history. I'll have my results next Friday (the

> 27th) when I meet w/ my endo (maybe sooner if he just calls me w/ them).

> I'm so curious. Of course, am hoping it's negative, but will laugh if

it's

> positive as I was treated as if I shouldn't have entered the radiology

dept

> at all yesterday!

>

> Wishing good health to all of us.

>

> Barb

> TT Jan 01

> ~3 cm pap thyca

> RAI 100mCi Mar 01

> working up a neck node now...unsure if thyca

>

> Every

> > time I have had an ultrasound, the technicians are completely

> > clueless as to

> > what they are looking for in my neck. They always have to repeat

> > the test

> > several times and even have the doctors come in to look.

> >

>

>

> For more information regarding thyroid cancer visit www.thyca.org. If you

do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank

email to thyca-unsubscribe

>

>

>

[Guest guest]

,

I think we should all wear " been there, done that " T-shirts for our exams.

Or, perhaps we should type up a history of our diagnosis and treatment. Make

a zillion copies. Then, when we go in for testing and are asked for the 103

time WHY we are having these tests, we can just hand out our well prepared

histories! heheh I know that can be very frustrating. On a serious note

though, I worry that we aren't getting the very best diagnostic evaluations

and treatment since no one seems to have a clue!

Best Regards,

Audra

[Guest guest]

Audra:

While I can appreciate your frustration with some of the treatment you have

received (and the inexperience and possible incompetence of those treating

you), I would encourage you to refrain from making a blanket statement as

the one below.

There are many folks on this list (I happen to be one of them) who are very

grateful to have the kind of medical treatment we're getting. (In my case,

it helps that I'm so close to Boston's hospitals and medical centers.) For

every person that has some questions about their diagnostic evaluations and

treatments, I'd bet there are maybe ten people (or more) who don't.

It is true that since thyca is relatively rare, it presents unique issues

for our doctors and nuclear tech specialists. But I wouldn't go as far as to

say that " no one seems to have a clue. "

Just my two cents' worth.

Peace,

Doug

north of Boston

dx pap. thyca 2/98; TT 3/98, RAI (150 mCi) 4/98, 29 EBR to trachea

8/98; right neck dissection 7/99; left neck dissection 1/01

> Re: to Audra-RE: What are the odds of metastases

> elsewhere?

>

> On a serious note

> though, I worry that we aren't getting the very best diagnostic

> evaluations

> and treatment since no one seems to have a clue!

>

> Best Regards,

> Audra

>

[Guest guest]

Dear Doug & Whomever Else I may have offended,

Please accept my apology for making a " blanket " statement about the medical

profession. I certainly was NOT referring to EVERY person within the health

care industry (in which I happen to work myself). It does so happen that I

am in very capable hands (Endo and Surgeon). I was questioning the test

(ultrasound) itself along with some of the technicians at MY specific

hospital. Please don't take offense... As many of you, I just try to make

sense out of the hand I've been dealt. And, now with a 21 month old son, I'm

more determined than ever to be around for a long long long time. Therefore,

I have very little patience for incompetence...especially when life is so

short already... My best to all.

Audra

[Guest guest]

I agree, we should type up our history in little bullets and put it in an

outline format. We could even highlight the pertinent parts. It might

streamline the whole process! I'm thinking flashcards might work too...

Peace, Love and all that Hippie Stuff!

Re: to Audra-RE: What are the odds of metastases elsewhere?

> ,

>

> I think we should all wear " been there, done that " T-shirts for our exams.

> Or, perhaps we should type up a history of our diagnosis and treatment.

Make

> a zillion copies. Then, when we go in for testing and are asked for the

103

> time WHY we are having these tests, we can just hand out our well prepared

> histories! heheh I know that can be very frustrating. On a serious note

> though, I worry that we aren't getting the very best diagnostic

evaluations

> and treatment since no one seems to have a clue!

>

> Best Regards,

> Audra

>

> For more information regarding thyroid cancer visit www.thyca.org. If you

do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank

email to thyca-unsubscribe

>

>

>

[Guest guest]

I agree, we should type up our history in little bullets and put it in an

outline format. We could even highlight the pertinent parts. It might

streamline the whole process! I'm thinking flashcards might work too...

Peace, Love and all that Hippie Stuff!

Re: to Audra-RE: What are the odds of metastases elsewhere?

> ,

>

> I think we should all wear " been there, done that " T-shirts for our exams.

> Or, perhaps we should type up a history of our diagnosis and treatment.

Make

> a zillion copies. Then, when we go in for testing and are asked for the

103

> time WHY we are having these tests, we can just hand out our well prepared

> histories! heheh I know that can be very frustrating. On a serious note

> though, I worry that we aren't getting the very best diagnostic

evaluations

> and treatment since no one seems to have a clue!

>

> Best Regards,

> Audra

>

> For more information regarding thyroid cancer visit www.thyca.org. If you

do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank

email to thyca-unsubscribe

>

>

>

[Guest guest]

Dear Audra, you certainly did not offend me. I think there are times for each

of us when we wonder and hope that we are getting the correct, best, most

reliable treatment available, and are not

real sure that we are: ergo: this listserve. And I do think this chain of

thought happens when we do run into problems with the care givers that we depend

on and count on to maintain our very

lives. I don't think your attitude was that unusual. Fortunately, it's a

temporary condition, as we are still here to tell about it. Was it you or

someone else that said " been there, done

that " . This forum is sometimes our only chance to vent, so vent we sometimes

must. We'll get over it and be here to tell someone else " Yes, I know just what

you mean " Best Wishes

lindalee@...

dx 12-96 follicular w/ bone mets

4 RAI= 840mCi 300mcg Synthroid

HPTH

Pgh., Pa

nysMommy1@... wrote:

> Dear Doug & Whomever Else I may have offended,

>

> Please accept my apology for making a " blanket " statement about the medical

> profession. I certainly was NOT referring to EVERY person within the health

> care industry (in which I happen to work myself). It does so happen that I

> am in very capable hands (Endo and Surgeon). I was questioning the test

> (ultrasound) itself along with some of the technicians at MY specific

> hospital. Please don't take offense... As many of you, I just try to make

> sense out of the hand I've been dealt. And, now with a 21 month old son, I'm

> more determined than ever to be around for a long long long time. Therefore,

> I have very little patience for incompetence...especially when life is so

> short already... My best to all.

>

> Audra

>

> For more information regarding thyroid cancer visit www.thyca.org. If you do

not wish to belong to this group, you may UNSUBSCRIBE by sending a blank email

to thyca-unsubscribe

>

>

>

[Guest guest]

Hi Audra,

I think that someone else needs to apologize to you instead........

I have had some excellent experiences but mostly disappointing, too.

My Endo was wonderful and my surgeon the best (though he did not know what he

was doing when he prescribed 3 cytomel a day after the surgery).

Of the bad experience, if my general practitioner had persued my

suspicious 3 nodules 2 years ago, this cancer would not have progressed to

the lymph nodes and now possibly to the breast.

We have the right to ask as many questions and also to educate

ourselves on our disease. Sometimes, as most of us are aware, doctors do

make mistakes....

Thanks,

Renata