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08-06-2008, 04:23 AM
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#1
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Senior Member
Join Date: Nov 2006
Location: South Carolina
Posts: 183
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Scan question
When you ladies and gentlemen have scans do you actually get to see the results? I have never been shown any results. My Onc just always says everything looks fine and your blood work is good.
I would think I have a right to physically see the results, is that true?
Thanks
__________________
Anita
er, pr-, Her2+++
Stage 2b, grade 3
negative nodes
4 rounds AC
3 months of weekly taxol
1 yr of Herceptin
Finish Herceptin May 2007
35 rounds of Radiation
Reconstruction completed Dec 2007
Implant replaced due to infection Mar 2008
4 Years NED!!!
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08-06-2008, 04:51 AM
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#2
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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I sit and read my chart from front to back every time I have chemo...it is your right to do that...if the nurses give you static, take it up a notch and talk to the Dr. or someone higher up.....I also get copies of all scans, bloodwork etc....
__________________
"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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08-06-2008, 06:27 AM
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#3
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Senior Member
Join Date: Oct 2005
Posts: 823
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I always look at my scans, I as well have copies of all my reports, blood work and any thing else.
__________________
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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08-06-2008, 07:12 AM
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#4
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Senior Member
Join Date: May 2007
Posts: 29
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wow, i consider you all brave that can read scans and dr's notes. I wish I had enough courage to it, but I just can't even though my onc says I'm ned I still feel like I'll read something with my untrained eye and go to far with it. Blanche
__________________
dx Nov. 2006
bilateral masc. Jan.07
8 positive nodes
Her 2 positive pr & est. positive
stage 3a
large tumor unseen by mammogram
tissue expanders
4 ac 4 taxetere with herceptin
28 rads
completed herceptin in march
silicone exchange end of march
staph infection on left inplant
removed left inplant
maybe Diep reconstruction when all is healed
Arimidex
oopheractomy Nov. 2008
negative on brac 1 & 2
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08-06-2008, 07:20 AM
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#5
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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Anita,
I always see my scans, blood tests etc. I asked after the first ones where done and now my Dr. just hands me a copy each time. Don't hesitate to ask for them, they are yours. I think some Dr's assume patients don't want to know. But there are many of us who want all the info.
With the scans in my hand I can then ask my onc. questions, like the many words and phrases in the report I don't understand.
Do what is comfortable for you. Give Boone a pat for me.
Donna
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
Last edited by DonnaD; 08-06-2008 at 08:34 AM..
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08-06-2008, 07:22 AM
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#6
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Senior Member
Join Date: May 2007
Posts: 29
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anita, I like the idea of holding the file and then asking the dr to explain there rather then when I home. Thank you Blanche
__________________
dx Nov. 2006
bilateral masc. Jan.07
8 positive nodes
Her 2 positive pr & est. positive
stage 3a
large tumor unseen by mammogram
tissue expanders
4 ac 4 taxetere with herceptin
28 rads
completed herceptin in march
silicone exchange end of march
staph infection on left inplant
removed left inplant
maybe Diep reconstruction when all is healed
Arimidex
oopheractomy Nov. 2008
negative on brac 1 & 2
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08-06-2008, 08:05 AM
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#7
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Last week I had an MRI of my shoulder and requested a printed report. In addition to the paperwork they gave me a CD of the test. I had no idea they were putting these on CDs now!! It was great to be able to bring the disc to the consult with the orthopedic doctor for him to look at it and explain things to me. It moved the process along.
I think it makes consultations so much more efficient when I know I have the information with me rather than counting on someone else "sending it over" from another doctor's office.
But I would add a caution that it is important to be able to review the results with someone who can interpret them so we don't misunderstand what we are reading. That is probably one reason doctors try to "protect" us from ourselves. And sometimes they are reluctant to release the results until the doctor has seen them first. Which I understand.
But in the end, we have a right to see all of these if we want. Times have changed!
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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08-06-2008, 08:33 AM
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#8
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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Bonnie, you are right. I forgot to mention I get a CD of my CT every time I go in. At first they were a dollar now they are free. This is extremely helpful if you are going for a second opinion.
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
Last edited by DonnaD; 08-06-2008 at 09:08 AM..
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08-06-2008, 08:38 AM
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#9
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Nope, not me. I just listen to them tell me all is well and that's good enough for me....at least at this point. IF, this disease ever decides to rear it's ugly head again and scans showed it, I would most definitely want to see it for myself. At the beginning when there was visable cancer in my body (right breast) I did look at the actual PET/CT but that was the only time. Since then I've had another PET/CT, abdominal CT and a bone scan and only listened to my doc tell me all was well.
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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08-06-2008, 12:03 PM
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#10
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Senior Member
Join Date: Jul 2008
Location: Murfreesboro, Tennessee
Posts: 48
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From a lawyer's perspective - HIPAA gives you the absolute right to see and have a copy of anything in your record. As somepne who represents medical facilities, just mention the dreaded HIPAA and you will get what you want (although they may ask you to sign a form). I can email you the HIPAA request form if you would like and/or need this. I have gotten copies of everythin so far and will continue to do so.
__________________
Dx June 2008, Age 44
Mother Dx age 54, deceased
1.2 cm tumor right breast, grade 3, ER 4+; PR 3+
HER2 +, invasive ductal carcinoma
Quadrantectomy right on 7/30/08
Path report, all 3 nodes taken were clear!!!!!!
Lymphatic/vascular invasion and sent out BRCA testing
Port in on 9/2/08. Chemo began 9/3/08. TCH (MUGA wrong - echocardiogram says 65% cardiac MRI 59% 9/10/98 elevated liver enzymes, PET scan 9/16/08 all clear.
TC ended 12/17/08
Port blood clot and hosp. 1/2/09
radiation begins 1/8/09
BRCA testing done - results NEGATIVE!
cardiologist said go back to coreg as it helps counteract heart effects of herceptin and slowly increase dosage - now 40mg daily.
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08-06-2008, 12:18 PM
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#11
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Senior Member
Join Date: Aug 2006
Location: Franklin, MA
Posts: 131
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Like DonnaD, I asked my oncologist for a copy of the report after my first scan and now she automatically gives me a printed copy of the report after every scan. I recently (June) went to Dana-Farber in Boston for another opinion and went through the process of rounding up all of my scans on CD so that I could bring them to my consultation (I set everything up in a binder with the CD's in a sleeve with the report that went along with the pictures). My hospital provides the CD for free, so going forward, I will ask for the CD so I can keep my binder up to date for the next time I go elsewhere for another opinion.
As for bloodwork, my oncologist shows us the report every time I go for chemo (which my husband then logs in our notebook) and if tumor markers are done, we always get those results as well (actual numbers).
You do have a right to see everything...but, as BonnieR said, it is important to have someone (like your doctor or one of the nurses) help you interpret things so you don't get worried for nothing over something you may not understand.
Good Luck!
__________________
Diagnosed 10-03-2005 (34 wks pregnant, 38 yrs old)
Lumpectomy Nov-2005. 10/18 Lymph Nodes impacted
Mets to liver, spine & femurs (thus being stage IV right from the get-go)
ER-, PR-, HER2+
Taxol/Herceptin/Zometa started Dec-2005. 11 cycles of Taxol.
Sept-2006: PET/CT scan of mets to liver, spine and femurs - Stable. Activity in R breast & mediastinum (not seen in prior scans).
Navelbine (3 wks on/1 wk off) as of Oct--2006 & continued Herceptin (every 3 wks) & Zometa (every 6 wks)
Jan-2007: PET/CT Scan - Stable. Continued Nav. through March-2007, then Herc./Zom. only after that.
June-2007: PET/CT Scan - activity in mediastinum. Back on Navelbine as of July-2007.
Scanned Quarterly since Oct-2007 - a few small scares, but otherwise stable due to continuing weekly Navelbine, Herceptin and Quarterly Zometa.
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08-06-2008, 03:53 PM
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#12
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Senior Member
Join Date: Nov 2006
Location: South Carolina
Posts: 183
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Thanks for the wonderful info everyone
I have in the past asked for copies of my bloodwork, but was not sure if scans fit in the same catagory. CT on CD, how cool is that!! Do you know if the PET are treated the same way?
Rebecca, I would love a copy of the HIPPA. Can I pm you my e-mail address?
DonnaD - Boone says "thanks so much for the pat". He and his older, but smaller sister Jinx (the cat), just can't seem to get enough of those!
__________________
Anita
er, pr-, Her2+++
Stage 2b, grade 3
negative nodes
4 rounds AC
3 months of weekly taxol
1 yr of Herceptin
Finish Herceptin May 2007
35 rounds of Radiation
Reconstruction completed Dec 2007
Implant replaced due to infection Mar 2008
4 Years NED!!!
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08-06-2008, 05:36 PM
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#13
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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The Doctor always explains everything and then
I say can I have a copy and they say yes and I keep
them all in case I should need a second opinion or
whatever, I have all the results. A few times they
have said everythings fine but then the results were
a little questionable and I question it and they say
its not worth worrying about?
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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08-06-2008, 07:23 PM
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#14
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Anita, There's probably not much use in seeing the scans unless your interested. However, it's always a good idea to get copies of your reports and to read the doctor's impression. And if you are curious about anything in the report than you can ask your onc about it. Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2023 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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08-06-2008, 07:49 PM
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#15
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Anita, we always got copies of scan results and X-rays. You are entitled to those. We would read over them in the docs office, ask questions, and then carry them home, and reread them, and write down more questions for the docs next time we saw them. Often we would call them the next day with our new questions.
__________________
For Nicola
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08-10-2008, 06:16 PM
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#16
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Senior Member
Join Date: May 2006
Posts: 3,142
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Scan question
Aloha,
Yes. You can get copies of all your tests, including blood work, reports from every test or scan and you can even ask to see the actual films. It is a federal law in the U. S.
All you have to do is ask.
I learned alot by getting copies of everything. I look things up or ask about whatever I don't understand or need more information about. Sometimes docs don't think we are interested in looking at those things.
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08-11-2008, 09:08 AM
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#17
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Senior Member
Join Date: Jan 2008
Posts: 305
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I used to just hear the results but now my doctors have lap top computers and they can bring up the scans and actually show them to me.
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08-11-2008, 01:55 PM
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#18
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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Hey Girl....
We always look, we always get a call from our nurse advocate before the appointment, we always get copies. Start a book for yourself and include all bloodwork; we have been graphing bloodwork and tumor markers for 2 years now, sounds like a lot of work but we can SEE better what is going on. We have every disc, every result in writing. Even if it is bad news we get to start working on it right away, good or bad. Best of luck my friend>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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08-12-2008, 06:54 AM
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#19
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Again, based upon the consistently good advice of my sisters on this site, I recently started to back track with Drs. to obtain copies of all notes and scans.
I began with my radiologist and was VERY surprised at the level of detail that were in his notes. I actually found it reassuring that I had a Dr. who took notes on everything from my diagnosis to my religious beliefs.
I also feel more in "control", knowing that I will have everything neatly compiled in case I need them in the future. I owe a huge debt of thanks to a sister that wrote in and said it was a nightmare gathering information to support a disability lawsuit.
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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08-12-2008, 12:01 PM
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#20
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Senior Member
Join Date: Jan 2007
Posts: 368
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I always get a copy of whatever scan I'm having, before I leave the facility. I get copies of all scan reports, but I don't usually bother with my blood work, since they have always been low for CA 27-29.
I have never got copies of my medical records from my GP, but may soon do that.
__________________
12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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