Tapes, Transcripts, might help Cancer Patients
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URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=1421
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Topic: Tapes, Transcripts, might help Cancer Patients
Posted By: trip2
Subject: Tapes, Transcripts, might help Cancer Patients
Date Posted: Aug 03 2008 at 5:14am
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http://www.medicalnewstoday.com/articles/116877.php - http://www.medicalnewstoday.com/articles/116877.php
"Patients can find it hard to absorb what their doctors tell them during stressful moments"
------------- Stage 2 2003
Stage 1 2007
BRCA 1+
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Replies:
Posted By: Jessie
Date Posted: Aug 05 2008 at 7:26am
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What a fantastic idea ! Wouldn't you, even now like to listen to tapes of your visits ?
I can see why this might be fought by alot of drs. I doubt if the dr who did my mastectomy would be too crazy about my having a tape of his comments in the hospital when one of my incisions was pouring white stuff like Niagra Falls ! The comment I remember most was "Mrs. Barnett, no reason to worry, this will be only a bump in the road for you". HE should have worried ! Three weeks later I was back in the hospital with MRSA, fighting for my life. Maybe this comment should be played for him every morning --- to keep his ego in check ! 
Seriously, recordings would be so helpful. Great for keeping one's husband informed on those visits when he can't go.
Hugs,
Jessie
------------- IDC,Stage I,Grade 3,dx 4/06
dbl mast 5/06,
systemic MRSA post surgery
septic shock, heart attack
triple bypass 1/07
no chemo due to infections and heart issues
so far NED!
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Posted By: sibu
Date Posted: Aug 05 2008 at 12:12pm
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My sister bought be a new iPod with a recorder attachment when I was diagnosed. Recorded all my therapy sessions, energy healing sessions, everything...fantastic!
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Posted By: kymmie
Date Posted: Aug 05 2008 at 1:54pm
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This is a good one.
When my oncologist's nurse was insisting that I need to get the port, I started asking her questions since I had not done any research on the port at that point and she was very short with me answering me with one word answers and acting as if I were taking up her precious time, so I asked her sarcastically, "What should I do, "google" the port to find answers to my questions?" She said, "Yes, that would be helpful."
I immediately called patient advocate and told them what she told me.
They were very apologetic and since then she has had a different attitude with me.
Off to the airport. Getting my port on Thursday.
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Posted By: Nancy
Date Posted: Aug 05 2008 at 2:41pm
Kymmie,
Nothing like a "TNBC Girfriend", who has done her research on the TNBC Foundation site at this point!! Way to go Kymmie.  Wait until she finds out what other information you have acquired. You can WOW her now!!
Hugs,
Nancy
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Posted By: kirby
Date Posted: Aug 05 2008 at 6:21pm
Way to go Kymmie. I like that you called patient advocates.
------------- kirby
dx Feb. 2001. Age 44 Lumpectomy
2cm. no nodes stage 1 grade 3
4 rnds AC, 35 rads
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Posted By: trip2
Date Posted: Aug 06 2008 at 4:43am
Good going Kymmie!
------------- Stage 2 2003
Stage 1 2007
BRCA 1+
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Posted By: Jessie
Date Posted: Aug 06 2008 at 5:08am
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Kymmie,
Wouldn't it be great if the tape had been rolling when the impatient nurse was being so rude to you !! 
Hey, maybe it would be a good idea to have continuous recording in each and all treatment rooms so that reviewers could catch patient mistreatment like this. What do you think?
Hugs,
Jessie
------------- IDC,Stage I,Grade 3,dx 4/06
dbl mast 5/06,
systemic MRSA post surgery
septic shock, heart attack
triple bypass 1/07
no chemo due to infections and heart issues
so far NED!
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Posted By: trip2
Date Posted: Aug 06 2008 at 5:18am
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Jessie, some of them may run for the hills!
In the past I have not taken more than a note or half sheet of paper w/questions to any appointment. Years ago I was seeing a doc for something, I pulled out a small piece of paper w/a couple of questions for him and he immediately headed for the door and left me sitting there. I knew exactly what he was doing and no I don't see him anymore.
------------- Stage 2 2003
Stage 1 2007
BRCA 1+
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Posted By: sibu
Date Posted: Aug 06 2008 at 5:30am
I'm with you, Pam!
You'd be amazed (or not) at how thorough , respectful and careful they are when they know they're being recorded!
I got up and walked out of my first surgeon's office when, after asking if she minded if I took some notes, she got extremely impatient and told me, "You're focusing on all the wrong questions. Just listen to what I'm telling you, and you'll be fine." This same woman actually called my friend who had recommended her that night, and told her "Please make sure your friend gets help somewhere else quickly, because I think her cancer may have already spread to the blood." Can you say doctor-patient privilege? Like I was going to go home and just forget the whole thing because she wouldn't let me take notes...My friend called me the next morning as I was on a field trip with my son's class to the zoo, and I completely broke down crying right there and then!
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Posted By: Jessie
Date Posted: Aug 06 2008 at 5:44am
Sibu and Pam,
You guys have had some real losers for drs --- I guess we ALL have. 
There really ought to be an easy rating system, like a patient rating system, that is available for all to reference ----- maybe there IS, and I just don't know about it ! Pam, have you run across anything like this in your research?
Hugs,
Jessie
------------- IDC,Stage I,Grade 3,dx 4/06
dbl mast 5/06,
systemic MRSA post surgery
septic shock, heart attack
triple bypass 1/07
no chemo due to infections and heart issues
so far NED!
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Posted By: billie
Date Posted: Aug 06 2008 at 7:24am
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Hi Miss Kymmie,
Way to go sister,I am so gld that you are on your toes and put them where they belong.
I have a response to your email and I am so proud of you.BUT,when I tried to send it ,it could not go through.Your box was full.You need to clean some out.That happened to me twice ,but now I try to remember.25 is not very many.
Anyway,clean it out and I will get back to you.Your sis. Lots of Hugggggsssss Billie
------------- Billie posting for sis Betty/67/caucasion female/diagnosed 2-27-08/gradeIII/7mm/invasive ductal carcinoma/T N /clear margins/node neg/4 X's taxotere-cytoxan/36 rads/7-08 PET/CT double image/no cancer
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Posted By: Nancy
Date Posted: Aug 06 2008 at 7:26am
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Donna,
She did what???? This post should go under "Another Crappy Doctor" topic!!! OK, one of the "questions" should be...."Do you plan to betray the doctor-patient privilege at any time, and if so are you prepared for a lawsuit"?
Hugs,
Nancy
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Posted By: Jessie
Date Posted: Aug 06 2008 at 8:55am
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Good idea, Nancy........ I wonder if patients have ever sued for that reason? Seems strange I haven't heard of any cases for that OBVIOUS violation, yet I've heard of many medical lawsuits for very frivolous situations.
Nothings worse than a bad doctor. 
------------- IDC,Stage I,Grade 3,dx 4/06
dbl mast 5/06,
systemic MRSA post surgery
septic shock, heart attack
triple bypass 1/07
no chemo due to infections and heart issues
so far NED!
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Posted By: Nancy
Date Posted: Aug 06 2008 at 9:02am
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Jessie,
Unless you have given them written permission to to release information, they may not! Not to any one who is not on the list.
Nancy
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Posted By: cg---
Date Posted: Aug 06 2008 at 9:36pm
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http://www.vitals.com -
http://www.ratemds.com - www.ratemds.com
http://www.drscore.com - www.drscore.com
http://www.vitals.com - www.vitals.com
Dear Jessie,
Those sites do exist. I have looked up physicians before and found the patient perspective rather interesting ..... and sometimes very, very true (for the doctors I knew).
Connie
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Posted By: cg---
Date Posted: Aug 06 2008 at 9:45pm
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Nancy,
A physician cannot even acknowledge that you are a patient. Anyone reading about UCLA and the violations of HIPAA can see how serious any breach of confidentiality is....and how expensive the fines could be.
Connie
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Posted By: Nancy
Date Posted: Aug 07 2008 at 7:18am
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Connie and all,
While I acknowledge that there are 100's of thousands of really superb people in the medical profession, there are still many who are arrogant self centered fools. They are the ones who can possibly cause your demise/and or cause permanent dissabilities.
In the age of technology, where information is just a click away, we can now question each and every statement these individuals make. However, there are still people who are intimidated, and those are the individuals that we here on this site can help. Your medical team should be viewed as your "employee(s)", and if you are not satisfied with their work, then you should fire them.
When I read posts from gals like Tai, I really want to just reach out and help all that I can. I have seen first hand the bungling of test results, (Lori), and know what an impact this can have on your life. I have posted as to the death of one dear gal who was on Medicaid, and they (medical profession), simply ignored her pleas for a mastectomy.
I know that individuals in the medical profession frequent this site. They are probably the really superb ones. It is the "other ones" who should be reading the posts from gals like Tai. Being the arrogant fools that they are, that will never happen.
Thank you for the links Connie. I have saved them to my favorites and will enter all the docs that I know. Perhaps everyone should!
Hugs,
Nancy
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Posted By: sibu
Date Posted: Aug 07 2008 at 2:57pm
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At the end of the day, I knew it would come to a she said-she said situation, since it was a phone call, and I had bigger worries at the time. Maybe I should go back and write a letter to that surgeon now, just to let her know how crappy that was...
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Posted By: Nancy
Date Posted: Aug 07 2008 at 3:19pm
Donna,
What are you talking about? Remember....we are in cyber space sweetie...not face to face 
Nancy
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Posted By: ReneeST
Date Posted: Aug 28 2008 at 10:15am
sibu wrote:
My sister bought be a new iPod with a recorder attachment when I was diagnosed. Recorded all my therapy sessions, energy healing sessions, everything...fantastic! |
We took our iPod with us to each visit with the surgeon, oncologist and radiology oncologist. I transcribed each session and I have referred to these documents frequently. Even now, when the stress level is down and my ears are open to hear, I still miss things.
I highly recommend taking a recorder of some type into each visit. And totally agree if the doctor doesn't like it, then it's time to find another doc.
------------- 56 yo Seattle, WA Stage 1, Grade 3, 1.3 cm IDC Lumpectomy Aug 2008
SNB neg;4 rds Taxotere & Cytox. BRCA-2 Variant. 16 Rads Jan 2009 "Canadian Study"
www.reneesbumpintheroad.blogspot.com
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