Re: Need to vent!

[Guest guest]

Hi Jane,

I can sympathize with your frustration in not getting any answers to your

questions. First I would make a list of questions for your endo, do not and

I repeat do not ask anyone who answers the phone at the doctors office any

questions regarding your husbands treatment. First of all it is none of

their business what your call is regarding, (except to say you would like a

return call from your doctor). Next I would make an appointment to meet with

the doctor and go over all your concerns. This way you will get first hand

information from your doctor. I would not rely on your PCP to interpret any

results from your endo, simply because your endo is the expert in this cancer

field, and your PCP may interpret results incorrectly thus adding to any

preexisting fears you are both experiencing. I hope this helps. Good Luck.

Toni

pap thyca lymph node involv.

TT 10/00 150 RAI 11/00

Tg positive, scan negative Nov. 01

200 RAI Dec 4, 01

3 hour body scan Dec. 11. more junk in chest area

MRI Dec. 17 showed spots on liver, enlarged lymph nodes in chest area

Ultra Sound January 7, 02 inconclusive results except polyp in gall bladder

Ct Scan to be scheduled for liver spots lymph nodes

[Guest guest]

Dear Jane and Vern,

I'm so sorry that you have to fight to get answers. I will add my belief

to yours that the RAI worked this time. If Vern got the whole 300 mCi,

perhaps it got what is in the spine. We can hope anyway. Could you call

the rad onc doc to see about the discrepancy in the dose? Maybe that could

offer some relief until you can get more concrete answers. I hope you can

get the results from the hospital and have a frame of reference for your

PCP. You are in my thoughts.

in OH

=====

Mail to: grammyDx2@...

1965 TT P/F thyca w/lymph mets,

Hypoparathyroidism

1982 RAI for neck & chest mets

09/10/01 Cean scan PTL~!

__________________________________________________

[Guest guest]

>Hi All,

Thanks for the responses. The first time I called the endo I just

tried to be diplomatic, asking when he would be letting us know the

results. When I called back, I did ask for him to call us. We'll

see if we get a call from him by Monday afternoon. If not, I'll get

more demanding. I'm walking a thin line here, Vern does not want to

alienate him, so I'm being more patient than if I were the thyca pt.

Vern has great respect for the title 'MD', even tho his experience

should have made him very sceptical.

Jane

Jane,

> Sorry to hear about the communication problems with the endo. It

can be so frustrating to go through nurses all the time who in many

cases may not be informed about your particular situation. Just a

thought-Can you specifically request that the endo return your call?

This would seem to be appropriate in view of the nature of your

questions and the fact that the nurse didn't have any answers.

Waiting is so tough. Best of Luck.

>

> Debbi E.

[Guest guest]

Though I can't offer any words of advice, I can commiserate with you

to some extent. For the most part, our HMO has been great regarding

my treatment, giving me the info in a timely manner, etc. Radiology

got a new radiologist, though and that changed briefly. I was on the

LID for a month before my body scan. I expected the results in few

days, it turned into almost 3 weeks! I couldn't go off the diet until

we knew what we were facing. I called and called my dr., to no avail.

Finally, I called radiology and was told the new radiologist didn't

talk to patients! After nearly 3 weeks, I finally blew up at both my

dr. and the radiology dept. Turned out I needed another treatment. It

kicked my butt, though because my body was so depleted.

anyway, thats my sad tale and thought I would share it.

hang in there and remember: the squeaky wheel gets the oil!

> Dear Thyca Friends,

> Yesterday I left a message for Vern's endo, asking when we will

have

> a report of the results of the WBS done 1/17. (Vern's RAI was 1/9.)

> Today we did not hear anything so I called the endo's office

again.

> Asked his secretary about getting the results. She said she'd

check

> with him. A minute later she came back to the phone to say that he

> said " the results were about as he expected, and he's waiting for

the

> lab results " . I said that did not tell us anything because we did

> not know what he expected. I also said the only lab last week was

> the lithium level. She said the lab was just late, they don't know

> if the tests were run yet and that was all she could tell me.

>

> After Vern & I digested that for a few moments I called back and

said

> we were not satisfied with the information, that we could not

> understand what bearing the lithium level had on the body scan

> results, and that we were concerned also because we think the RAI

> dose was different than we had been told would be given. Miss Just-

> Too-Sprightly-For-Words said that she would make a note of it and

> pass it on to the doctor. End of conversation.

>

> So now we wait to see if he will call on Monday. Maybe he wasn't

> even there and she just made up something she thought sounded good.

>

> Of course, Vern thinks the RAI probably failed again. I don't

> believe that. The 48 hour scan after the 2 mCi showed some uptake

in

> the spine and diffuse uptake in the lungs. The endo showed us that

> one before they sent Vern upstairs for the big dose.

>

> If it is really in the spine I want to know what possible

treatments

> are available and when they can be done.

>

> I think Monday I'll send to the hospital for the lab reports and

the

> radiology reports. Maybe our PCP can help us understand what they

> say.

>

> Thanks for listening. It really helps to know you're out there.

> Jane

>

> Husband Vern dx papca 11/91 pt & tt 12/91, RAI 92, 93, 94, annual

> recurrences in rt neck since '92, surgically removed. Mets to left

> neck 12/00, mets to lungs and liver dx 3/01, RAI 1/01

[Guest guest]

Jane,

Sorry to hear about the communication problems with the endo. It can be so

frustrating to go through nurses all the time who in many cases may not be

informed about your particular situation. Just a thought-Can you specifically

request that the endo return your call? This would seem to be appropriate in

view of the nature of your questions and the fact that the nurse didn't have any

answers. Waiting is so tough. Best of Luck.

Debbi E.

TT 3/7, RAI 102.7 mci's, 175 mg synthroid

Need to vent!

Dear Thyca Friends,

Yesterday I left a message for Vern's endo, asking when we will have

a report of the results of the WBS done 1/17. (Vern's RAI was 1/9.)

Today we did not hear anything so I called the endo's office again.

Asked his secretary about getting the results. She said she'd check

with him. A minute later she came back to the phone to say that he

said " the results were about as he expected, and he's waiting for the

lab results " . I said that did not tell us anything because we did

not know what he expected. I also said the only lab last week was

the lithium level. She said the lab was just late, they don't know

if the tests were run yet and that was all she could tell me.

After Vern & I digested that for a few moments I called back and said

we were not satisfied with the information, that we could not

understand what bearing the lithium level had on the body scan

results, and that we were concerned also because we think the RAI

dose was different than we had been told would be given. Miss Just-

Too-Sprightly-For-Words said that she would make a note of it and

pass it on to the doctor. End of conversation.

So now we wait to see if he will call on Monday. Maybe he wasn't

even there and she just made up something she thought sounded good.

Of course, Vern thinks the RAI probably failed again. I don't

believe that. The 48 hour scan after the 2 mCi showed some uptake in

the spine and diffuse uptake in the lungs. The endo showed us that

one before they sent Vern upstairs for the big dose.

If it is really in the spine I want to know what possible treatments

are available and when they can be done.

I think Monday I'll send to the hospital for the lab reports and the

radiology reports. Maybe our PCP can help us understand what they

say.

Thanks for listening. It really helps to know you're out there.

Jane

Husband Vern dx papca 11/91 pt & tt 12/91, RAI 92, 93, 94, annual

recurrences in rt neck since '92, surgically removed. Mets to left

neck 12/00, mets to lungs and liver dx 3/01, RAI 1/01

[Guest guest]

Ill say change the doctor! You are a nice lady and you deserve better!

Love,

Jolie.ca

[Guest guest]

Wow, it sounds like your doc doesn't have a very good bedside manner.

As you well know, we can **never** know **for sure** that our cancer

will not come back. And a suport group is a great thing, even for a

" good " (ahem!) cancer, because it is still cancer, and we have a lot to

deal with! But you knew that! : )

About the potassium though, it is true that a low potassium level can

cause difficulties similar to being hypo, so if the doc prescribes a

potassium supplement, it might be helpful if your level is low. We had

to take my dad to the hospital once because he was weak and had

symptoms similar to being hypo, and it ended up to be a potassium

deficiency. So I would definitely take those potassium tests

seriously.

Hope you feel better soon,

Bonnie

__________________________________________________

[Guest guest]

How interesting!! The MD recognizes the hypo symptoms, has the pt.

in front of her describing all of these things, but chooses to accept

the lab results instead. Then, instead of trying a bit of fine-

tuning, she chooses to do extensive lab testing to find other causes

for these symptoms. Maybe you need to find another MD, but maybe it

would be possible to try educating this MD instead.

How about calling the MD and asking to take a slightly higher dose of

medication before looking for other causes? Then have a TSH test

again in a few weeks. You have nothing to lose. Promise you will

also eat bananas and drink orange juice to get the potassium level up.

Then, if TSH change doesn't do the trick, you can still pursue the

other avenues.

Jane

Husband Vern is the thycan, since 11/91. Still needing tx due to

mets.