I learned early on (almost 9 yrs ago) that the only way to deal with the inefficient medical staffs these days is to never trust any clerk to check your reports, doesn't matter which test you have, GET A COPY OF IT RIGHT AWAY WHEN THE DOCTOR TELLS YOU ABOUT IT! Get loose leaf notebooks, file each type of report under it's own category. Pathology, blood, CT Scans, MRI's, and any other type of test. Keep these records safe, and be sure to keep an updated list of all your meds, and if you see a new doctor, give him/her a copy of them. If you are computer literate, and since you are on this website, my assumption is that you are. make yourself a file and keep it updated, that way, you will also know when you had what test. (I'm working on my 4th volume now).
I cannot begin to tell you how important it is to know when your tests were done. DON'T DEPEND UPON YOUR DOCTORS TO KEEP A SCHEDULE!
Be PROACTIVE, and yes, you may think this is a lot of work, but let me assure you, the LIFE YOU SAVE MAY BE YOUR OWN. I changed Oncologists because tests were not being done timely!
Found out my cancer markers were elevated, and if I had not been keeping track, I would have not been in a position to know and to get my treatment back on schedule. YOU CAN NEVER BE TOO CAREFUL TODAY. Doctors are rushed, clerks are careless, and files get misfiled. GET COPIES BEFORE YOU LEAVE THE OFFICE, and compile your own files.
After 9 years, I can compare bloodwork, cancer markers, and scans from 2000, to be sure that things haven't been missed! Remember -- Doctors can only do so much -- they PRACTICE MEDICINE --- that's because they haven't got it right yet!!!!!
If you have to be a total Bitch -- so be it. It's your LIFE you are dealing with.
Love to all of you, I know the struggles you are facing first hand, don't give up. FIGHT!!!!!
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Taking charge is the best way to SURVIVE
- By MarionBCDIY
- Posted April 26, 2009 at 10:57 pm · 9 replies
- In Taking charge: Being a proactive patient
- Shared with the public
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9 replies
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- By TwoGee
- Posted April 27, 2009 at 8:32 am
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You are absolutely right. I have what I call my "cliff" notes, just so we all (Dr's and me) can keep track of the BIG picture. I will be 9 years in November.
With experience comes wisdom.
Thanks.
- By chloemom
- Posted April 27, 2009 at 8:41 am
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And with this site comes shared wisdom!! Thanks to both of you for sharing these suggestions.
- By faithmena
- Posted April 27, 2009 at 10:00 am
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And for someone just starting out thanks so much !!
- By nutrachris
- Posted April 27, 2009 at 10:14 am
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Another important thing is to request some of your original tissue samples from the Pathology department that did your pathology report.
They may prove valuable as new targeted drugs are introduced. You cannot trust hospitals to safekeep them. In large cities they lose patients and state laws vary about the retention of tissue samples.
Hugs
Christine
- By MarionBCDIY
- Posted April 27, 2009 at 11:53 am
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Oh my gosh, what a wonderful suggestion, 9 years ago it was not even considered, don't know the logistics of it, or if pathology departments would be too easy to convince, but what a wonderful idea.
Thank you so much, maybe I can still get some of mine, who knows, but after so many years, I can only hope.
Love to you, and best wishes on your journey through BC and beyond.
- By w1pamela
- Posted May 17, 2009 at 5:58 pm
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Hi,
Mercy I just started this journey. DX 3/20/09. What a wealth of wisdom I am getting. Thanks for sharing all of this.
Now I will have to get the nerve up to ask for everything.
I am Stage IV and am on Arimidex as I was a prime candidate for it and Zometa for my bones. I have already learned so much just being on this inspire site.
Thanks again,
Pam
- By ious1Tjed6247
- Posted October 31, 2009 at 9:42 am
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THIS POST ..is worth every word it. Good record keeping is important. This info keeps it in front of anyone who is new or needs to have answers and insight.
- By R
- Posted October 31, 2009 at 11:40 am
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I can't agree more....I always ask for a copy of my scans and blood test results. The nurse knows now and has it available for me in my chart before I come in.
It is your life and you are paying for it all so you can get a copy of anything you want, just ask for it.
I keep all mine in a binder with all my notes, I take it with me to every appointment and can refer back to anything I need for questions. I also write down any questions I have for the doc and record the answer. My doc has requested I wait to 'bring out the book' until the end of the appointment, which makes sense as he may have answered them already or more may have come up. More efficient that way.
- By MarionBCDIY
- Posted November 1, 2009 at 6:43 pm
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Terrific -- I am on my 5th loose leaf notebook - I have them by year - so I can go back and check bloodwork, or scans etc.
A little while back - my liver enzymes went nuts - went from 22 to 182+ -- since I see so many doctors, and who remembers who asked for what tests -- it's wonderful to have your own file, to refer to. Instead of having to try to get the info from secretaries who will probably charge you $5.00 a page to look it up and print it. If you do it when you are there, they normally cooperate and give you a copy.
Keep up the good work -- Best wishes,
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