MSKCC's lab

[Guest guest]

and Dr. ,

Thank you for your replies to my post. It does make me wonder how much the

medical profession appreciates patient knowledge or empowerment. I feel

uncomfortable asking knowledgeable questions because I'm " not supposed " to have

all this information learned through the listserve groups. I must remember to

be stronger and even if I have to make a nuisance of myself, to get all the

paperwork that I want copies of. I get tired of playing phone-tag when

asking for copies, then being ignored after being told they'll be mailed asap.

I

like to have my copies in hand before my next appointment, so I can formulate

questions. Their procedure is to give you copies when you are there in

person, right before you leave. Well, then you can't ask any questions based

on

the results. Nobody is refusing the copies, but they " forget " to include the

qpcr unless it's specifically asked for by name. What part of " I would

like copies of ALL my tests from my last appointment " do they not understand?

I didn't realize it was still pretty standard to do bma's the first 18 mos.

I'll follow the recommendation that I continue on the three month schedule

and hope to be still doing well enough after 18 mos. to lengthen the time in

between them. At lease the procedure is tolerable with little discomfort at

Sloan. I do like my dr. very much and want to continue to be treated at

MSKCC. My former local oncologist (who dumped me because he won't be second

fiddle to a specialist) had few cml patients. I'm more comfortable being seen

by

a dr. who sees many other cml patients. If I become a stronger advocate for

myself, I'm sure we can reach a compromise between my expectations and the

hospital's procedures.

Sometimes I think they may be so busy handling patients that are in much

worse shape than I am that I don't get the attention I'd like. If that's the

case, I'll be glad I'm doing well and hope if I ever need more of their time

that I'd be treated more carefully.

Thanks again, I appreciate the discussion on this topic.

in NY

dx. Jan. 04

Zero Club #756