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Old 07-14-2008, 12:23 AM   #1
madubois63
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The cost of your own medical records

It is VERY important that you get copies of your medical records every inch of the way!! I was denied long term disability (on a technicality) 4 years ago and didn't fight the case. Last year, someone else sued and won her case Now the insurance company has to re-evaluate and notify everyone they denied. What that means is that I had to get ALL my medical records for the last 4 years. I've been collecting scan reports and blood work, but I didn't think to get discharge notes and doctors correspondence/notes. Of course, I have a bc onc, a leukemia onc, a bone marrow doc, a pulmonary doc, a thoracic surgeon, a gyno, a bc surgeon, a radiology onc and three hospitals....Some of the hospitals/docs charged me for the copies and they were real expensive (.25 a page). One hospital wanted $1,400 for all my records. Instead I paid $25 for an hour to sit with the stack and pull just the papers I needed, then it cost $40.00 for the copies. All in all, I've paid over $200.00 for copies. This does not include any of my films (which I do have too). After collating a friend let me use her office copier - which saved me me nearly $60.00 in copies. I now have a complete record of everything, but if you do it as you go along it won't cost you like it cost me....Please pray I get a favorable decision. It will be retroactive nearly 4 years and I'll get interest!!!

It was a costly lesson, but you never know why you might need the records. My friend's doctor's medical record room had a convenient fire and some records were lost. Just another reason to have your won copies....
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Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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Old 07-14-2008, 06:03 AM   #2
lilyecuadorian
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Maryann I wishing the best LUCK !! I got the felling that you are going to win this one too!!!
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Lily
Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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Old 07-14-2008, 06:35 AM   #3
Hopeful
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Excellent advice. Thanks for posting. Best of luck with the review.

Hopeful
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Old 07-14-2008, 10:10 AM   #4
StephN
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Dear Maryann.
MY! You have been a busy bee, as if you had nothing else to do. Hassle those years of records out of hiding.
I can't see how they would turn you down after your history! They had BETTER not!

I had a friend tell me when I was just starting (she was 7 years into her fight) that she had an entire two drawers of a file cabinet with her records. So, that gave me the idea that I needed to get another file cabinet and make room for my records as I collected them.

That was a nice idea for a while, but I am quite behind on the filing and sorting out of what I need to keep and bills paid, etc.

P.S. Found the filing cabinet at a local garage sale for $15.00. It is heavy steel, 4 drawers and came from an insurance office where they had been very nice to it!
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 07-14-2008, 10:27 AM   #5
hutchibk
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this is a good question for my doc when I see him today. I have about 1/8th of my records, but I stopped trying about 2 years ago... I am going to ask him what he recommends as far as what I should have in my files and how he will assist me in accessing his file should I ever need it. I WILL make him help me come up with a plan. We are pretty tight and he won't duck it.
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 07-14-2008, 10:44 AM   #6
AlaskaAngel
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Suggestion

Hi,

I want to make a suggestion that I think will work out better for both doctors and patients.

Maybe the problems I've had are partly the result of my personality (for better or worse), but throughout all of it, there were just 2 major difficulties I ran into and both were due to the same root problem -- not being given the chance to see my medical test results PLUS not simply asking to see them at the time. I don't mean just making sure to get copies as you go. I mean at the time when you are there to discuss them with the doctor. If he is discussing the results with you, he has a copy and has seen them, whereas you, the patient, are at a disadvantage because you don't have a copy in front of you and haven't had the time he has had to review it and think about it.

So my advice is, when the discussion begins, simply ask him to give YOU a copy right then and there.

The best docs I've had were those who gave me a copy before I even asked, when I sat down to begin the discussion about the test results. And those docs were the ones I've had the fewest resulting misunderstandings with.

It seems like such a simple, obvious thing to do. But most of us don't do it because we don't think of it at the time, or we are politely waiting for help from the doctor.

AlaskaAngel
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Old 07-14-2008, 11:30 AM   #7
DanaRT
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Mary Ann,

I admire your hard work and perseverance. Thanks for the advice.
Good luck, you deserve to win.

I kept many of my mammograms and path reports under my bed. My radiation oncology office requested them. These were my personal records even though the hard copies were orginal. When they were done with them records manager sent all of the contents in the oversized file back to each imaging center! I am so frustrated by this. Now I have to round them up again....

Dana
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-Dana-

]
Diagnosed - Nov. 2, 2007 at 45
Lumpectomy - Nov. 13, 2007
Tumor 1.2 cm
Stage 1 Grade 3
ER/PR - Her2 +++ (3.8)
Taxotere/Carboplatin/Herceptin- 6 rounds
Neulasta
Radiation 33 treatments - will be done 6/6/08
Herceptin through 12/08
12/07 MUGA 61%, 4/08 MUGA 60%, 7/08 MUGA 64%
three wonderful daughters, a terrific husband,
Life is Good
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Old 07-14-2008, 12:21 PM   #8
Lani
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from what I have heard many doctors and hospitals in California

at least where there is a law on what can be charged for medical records
there are two prices for copying, one for the records to be sent to another doctor and the other for records to be copied for lawyers and court cases.

If you told a friendly doctor (or his/her nurse) about your dilemma perhaps he/she would let the
copies be sent to them and then release them to you. It could be your family doctor perhaps even.

Worth a try?
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Old 07-14-2008, 01:07 PM   #9
Chelee
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Without getting into everything I needed all my medical records. I had most of them but they did not include all the doctors progress notes, hospital records which include surgical reports, nurses charts & notes, discharge papers, etc. This was a big job for me since I have seven doctors.

What Lani said is correct. They usually asked me what doctor I wanted these sent to so that I would't have to pay for them. But in my case what I found out is when you fill out the medical records release form it has a bunch of boxes to check as to why you want your records? It says something like for Self, doctor, Attorney, continued care, etc. I can't remember them all right now. But whatever you do...DON'T check just the box that says "self". If you do they WILL charge you because you want them for yourself.

Later while picking up more of my records I was talking to a women in the records Dept and the topic of charging me came up. She explained that if you check the box that says "continued care" you will not be charged. They know you want the records to take to other doctors that you will be seeing. So the two ways to make sure you won't get charged is to have them sent to one of your doctors if you have a close enough relationship with him/her. Or check continued care and they will not charge you. I always checked BOTH boxes that said "self & continued care". I can't stress enough how many records I've collected this way...not only my records but all of my Mother's records. I seriously haven't paid a dime for any of them due to checking the right boxes. Hope this helps someone.

Chelee
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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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Old 07-14-2008, 02:19 PM   #10
ElaineM
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The cost of your own medical records

Getting copies of records it very useful not only for insurance and disability issues, but for other reasons as well. It is a federal law that we are entitled to them.
I have always gotten copies of all my test results. I have learned alot. I can go back and check on things myself anytime I need to do that. I can share them with doctors and medical professionals who may not be in the "loop". I have learned that sometimes the medical professionals we requested to be sent copies don't get them. I have also learned that doctors who order various tests don't always tell the patients all the results. We can read them for ourselves if we get copies. I look up things I don't understand in a medical dictionary or on the internet. Since my doc can't remember when I am supposed to get regular tests I can remind him if I have a copy of the last test.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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