Re: Getting Results from MDACC

[Guest guest]

Hi Kathy,

I am not presently a patient at MDACC but I have consulted there in

the past. I would say that they are notoriously bad about paperwork!

Getting results in writing, etc. Some people only get a phone call with

results from the PA.....some just a simple e-mail........but often not the ]

real interpretation from the pathologist, etc.

I expect that others will share their experience and you will not be alone

on this. But he is what I wanted to comment on.........a consult is usually

a one time visit, to see if they agree with your present treatment, which is

what I did in seeing Dr. Talpaz in Feb. 2003. If you are seen their on a

regular basis, whether it is every 3 months or 6 months.......you are seeing

them as a cml specialist and you are their patient! Especially if they are

running all the tests on you.....doing the bma, the FISH and/or PCR and

your local onc is not doing this..........they are the DOCTOR! and your local

needs a report of all of your visits and your test results, coming from them,

not from you.

Personally, I sometimes think that MDACC has too many patients to stay

on top of everything......too many trials running, etc........and the way

that you

get what you need and should be getting is to have high expectations and

make demands, or it falls through the cracks.

I hope I have not offended anyone....this is not to say that you don't get

good

care there........but they are weak with the paperwork end, and I have

heard this

before.

Good luck getting your situation straightened out.

PS. I never heard such a thing.....that you are not a patient if you are

not in a

trial.....that is a pretty ridiculous comment. If they are following you on

a regular

basis, you are a patient.......do they think this is part of your Houston

vacation!

C.

[Guest guest]

This happens often at the busy, chaotic, big

academic medical centers. Try to speak to someone, a

nurse or your doctor, face to face, or at least on the

phone, when making the request. Call again to remind

them. Try not to get too frustrated.

ho