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Fancy

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Angel
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Reply with quote  #1 
As a patient who has a major illness, there is one person who is responsible for overseeing your medical treatment.  That person is YOU!

So as a part of your responsibility, you have to keep every one of your medical papers.  Request--DEMAND, even--a copy of every test.  Ask for copies of every consultation writeup.  Put all this in date order and keep it in a safe place.  Do not let it out of your hands.  If a doctor wants the data, require that s/he make a fresh copy.  Carry these records with you to every first visit with a new doctor. 

Your second responsibility is to read these damn things and ask questions until you understand them.  Trust your instincts.  If something seems wrong to you, question it.  Don't let the medical profession convince you of their godship--they aren't.  Don't let them tell you you don't have the right to thoughtful answers to your questions--you do.  Research EVERYthing on the internet and in libraries.  This website is a good start.  There are many others.

In my case, my original oncologist has retired and nobody has my records but me.  My copies saved me a round of VERY aggressive chemo.  And my refusal to take the first "opinion"--"you need dose-dense taxol starting tomorrow!" saved me from a wrong diagnoses and untold misery.  You can be just as protective for yourself.   Get mad.  Swing back.  Print out your findings and ask questions.  And if your doctor gets offended by your atttitude, keep the attitude and lose the doctor.

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the Frog's Princess
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4/1/08 Stage 4
and looking for NED
Odalys

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Reply with quote  #2 
Well said, Fancy. 
 
I just want to add...

Federal law (USA) and patient rights entitle you to a copy of your records and everything you sign.  So ask your doctors for a copy of your:

·        history and physical exams

·        consultation report

  • operative report
  • pathology report
  • tests results/interpretation of x-rays, CT scans, MRI
  • lab reports
  • Discharge Summary (for any hospitalization)

Paper copies are good but if you can, scan them and convert them to pdf files.  You can save them to a CD or flash drive and take them with you everywhere you go.  

 

Always ask questions and when in doubt get that second or third opinion.  You are your best advocate.  Remember it's your body and your life so you get to decide how aggressive your treatment will be. 



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Odalys
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Fancy

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Angel
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Reply with quote  #3 
Thanks, Odalys, I forgot to put that in.

And If somebody gives you a hard time about seeing your file, or getting copies (and they should be FREE, not $1 a page!) inquire if s/he would like to meet your lawyers, Smith & Wessoon (that's a well-known manufacturer of handguns, in case you don't know.)

This is serious business, folks.  You really DO need to have ALL of these records, and you really DO need to understand them.  Every cotton pickin' little word of them!


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the Frog's Princess
12/05 ILC 1C NX M0

4/1/08 Stage 4
and looking for NED
nosurrender

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Reply with quote  #4 
Fancy- they tried to pull that on my mother- charging a dollar a page and a $25 "handling charge"
I called them up and straighted THAT one out!


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Fancy

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Angel
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Reply with quote  #5 
How pathetic!  But if you hadn't been there.....

Uppity women unite!!!!!


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the Frog's Princess
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4/1/08 Stage 4
and looking for NED
csp

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Reply with quote  #6 
Fancy and Odalys
Excellent advise!! I DO have my path reports of all my
biopsies. But I have a dumb question .
The CD that they make when doing an MRI, can you
down load a copy of that on your computer and make
your own copy to keep in your files?  I really like the ideal
of scanning the path reports and down loading them on a
flash drive or CD . Also,Can you get copies of your recent films? Does it cost anything?
Thank you,
Carrie
 

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Fancy

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Angel
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Reply with quote  #7 
Dunno--good question.  They SHOULD make you a copy.  When I went to CTCA, my doctor and hospital made copies of EVERYTHING--mamos, cat scans, the works.  I hand carried them up there, and hand carried them back. 

Your medical records belong to YOU.  Your hospitala or doctor's office just keeps them in one place.  Of course, that means that if you take them with you and lose them.......


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the Frog's Princess
12/05 ILC 1C NX M0

4/1/08 Stage 4
and looking for NED
Karen1956

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Reply with quote  #8 
I have all my mammos and the MRI from I was Dx to take to the surgeon and onc.  I never brought them back to the place that I had my mammos as I had a bilat. they are sitting is the back of a closet. Also have copies of my biopsies reports.  recently I went to medical records to get copies of my reports.  They do charge, but it was not much.  I have copies of my labs from chemo but not from my follow up visits.  One day I will ask.
Karen
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Reply with quote  #9 
Whenever I get a test done and they ask on the form what docs do I want the results sent to, I always put down my own name and address. It works!

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Odalys

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Reply with quote  #10 
Carrie - you can copy your CD as long as you have CD burning software.  Software such as Nero will allow you to "clone" a CD.   It comes out identical to the original.

Fancy - the medical information contained in the medical record belongs to the patient but the paper (electronic) it's contained in belongs to the facility.  A patient will never be given the original because it belongs to the facility and there are laws requiring they keep it for a designated period of time.  However, patient is entitled to a copy or a duplicate.  Also, most states have laws regarding how much you can charge for copies of medical records. 

I am very passionate about patients obtaining their medical records and have been a Registered Health Information Administrator (RHIA)for over 20 years.  Feel free to PM me if you have any other questions. 

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Odalys
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Fancy

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Angel
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Reply with quote  #11 
Quote:
Fancy - the medical information contained in the medical record belongs to the patient but the paper (electronic) it's contained in belongs to the facility.  A patient will never be given the original because it belongs to the facility and there are laws requiring they keep it for a designated period of time.  However, patient is entitled to a copy or a duplicate.  Also, most states have laws regarding how much you can charge for copies of medical records.


Odalys, that's fine.  I don't need the originals.  I just need the copies.  My records from my first breast cancer have been archived at the doctor's office, he's retired, and so on.  If I hadn's had them, they would be unreachable.  I think they kept them for 10 years.

Interesting that the state governs copy costs.  My doctors just give me mine.  Maybe they add the cost to the bill and I don't know it.  Anyhow, it's not a lot.  Most of the records at my hospital are on the computer now.  They just print two copies.



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the Frog's Princess
12/05 ILC 1C NX M0

4/1/08 Stage 4
and looking for NED
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