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09-01-2006, 07:59 PM
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#1
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Senior Member
Join Date: Apr 2006
Location: FLORIDA
Posts: 148
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Do Any Of You Get Copies Of Your Medical File Or Just Results From Tests
WHEN I FIRST STARTED ALL OF THIS, I WOULD USUALLY GETS COPIES OF TEST RESULTS BUT HAD NOT THOUGHT ABOUT GETTING A COPY OF MY MEDICAL FILE. IN THE BEGINNING I JUST TOOK ONE THING AT A TIME. THATS ALL MY BRAIN COULD COPE WITH, SOMETIMES I DIDN'T WANT TO KNOW THINGS AND DIDN'T ASK TOO MANY QUESTIONS. FRANKLY, I DIDN'T KNOW WHAT TO ASK AND DIDN'T UNDERSTAND TOO MUCH IN THE BEGINNING. THIS SITE HAS REALLY HELP ME UNDERSTAND SO MUCH ABOUT MY DIAGNOSIS AND TREATMENT. AFTER SEVERAL MONTHS I ASK FOR A COPY OF MY FILE. I'M GLAD I DIDN'T DO IT IN THE BEGINNING---IT WOULD HAVE SCARED ME TO DEATH. I'VE BEEN SO BLESSED AND HAVE NOT HAD ANY COMPLICATIONS WITH MY TREATMENTS. IT WAS SO INTERESTING TOO READ MY FILE AND FOLLOW THE PROGRESS I'VE MADE THRU OUT THIS YEAR. I WAS JUST WONDERING HOW MANY OF YOU GET COPIES OF YOUR MEDICAL RECORDS
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SHEILA (45)
09/2005--BREAST CANCER/8 POS NODES --A/C, MASTECTOMY,TAXOTERE, RADS, TAMOXIFEN,HERCEPTIN
02/2007--B/C METS TO OVARIES--HYSTERECTOMY, FASLODEX
12/2007--ENLARGING LYMPH NODES IN ABDOMEN--IXEMPRA, THEN TYKERB
08/2008--COLON TUMOR--A/C AGAIN,
12/2008--ABDOMEN TUMOR--AVASTIN/NAVELBINE FEMARA
05/2009--MET TO SPINE (L2) RADS
CURRENT TREATMENT
07/2009- START ZOMETA MONTHLY, XELODA & ABRAXANE......SURVIVING THE BEST I CAN
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09-01-2006, 09:51 PM
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#2
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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I don't have a copy of my complete medical file. I do, however, have copies of all my labs, MRIs, PET/CT scans, bone scan, surgical report, pathology report, etc. The only thing I do not have are copies of my oncologist's written notes on each of my visits.
I was fortunate to find this site when I was initially diagnosed and before any treatments or surgery. This site gave me so much information - information at first which frightened me - and then enlightened me. Thanks to this site I am a well informed patient who knows what questions to ask the doctor. I feel that I am an active participant in my treatment.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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09-01-2006, 11:22 PM
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#3
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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At first I was just getting copies of my CBC's. Then after I had a few problems I switched to a new oncologist and asked for all my records. Which it seemed like I got them all...but after some time I realized there are many things missing? In fact, I JUST called the social worker today to tell her my records are incomplete and I need ALL my records. She said no problem.
I too found it interesting to read my file. (The parts I have of it anway.)  But I have all my PET/CT scans, MRI's of brain, x-rays, surgeons report...everything related to my chemo treatments. I have learned alot reading these. In fact many things they never told me about. But I can't wait to get the missing pieces. I think its important that we have our medical records. In fact mine has come in handy when I go to another doctors appts. Like my pulmonary doc the other day. He said he sure wished he had my last CT scan. I opened my folder and said "Here, I have it right here." He was shocked and said I come prepared. lol I always have my ECHO's, PET/CT scans, CBC's and any other report I feel might come in handy.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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09-02-2006, 05:26 AM
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#4
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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I have copies of all my surguries, all my CT scans, bone scans, bloodwork etc...surgical reports...I sit and read my chart every time I get a treatment....they leave it on the table by the chair I sit in, so I just help myself...I know some nurses don't like when you do this, but its about me...its my file and you do have a right as a patient to read your file!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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09-02-2006, 06:41 AM
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#5
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Shelia is correct, Not only do you have a right to view your files, you also have a right for copies of all of your files.
Hospitals and to some extent doctors are notorious for losing records and files.
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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09-02-2006, 06:46 AM
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#6
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Senior Member
Join Date: Oct 2005
Posts: 823
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I have copies of everything thas has been done to me. Sometimes I have had to ask twice for it, but I do have them. I have made a binder with index's to put the paperwork in. After my 5 day hospital stay at the beginning of August for a staph infection, I called hospital records and asked for copies as well.
I also so do this my dog's records as well.
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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09-02-2006, 07:18 AM
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#7
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Thanks Joe and you are correct...sometimes Dr's and Hospitals are reluctant to give you your reports or file....but it IS your right as a patient to read any and all files the Dr. or Hospital has on you and get copies of anything you want....they (the Nurses and Dr's will try to fight you on this sometimes...like it is private, but you as the patient can demand it!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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09-02-2006, 11:10 AM
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#8
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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I have copies of all the record and can you imagine almost 6 years worth! It comes in very handy to refer back to seems I am still in treatment. No one has ever given me a hard time about asking for them. Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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