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03-28-2007, 06:43 AM
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#1
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Member
Join Date: Mar 2007
Posts: 5
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oncotype scores ?
I wonder what oncotype dx scores others on this site were given? I had a 17. it was my understanding that HER/2 scores are typically higher. I called and talked to one of the doctors there and he told me that the week before someone who had a score of 5 was also HER/2+.
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03-28-2007, 08:23 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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according to my report...my oncotype scores were: Recurrence Score=29, then it says..."Patients with a Recurrence Score of 29 in the clinical validation study had an Average Rate of Distant Recurrence at 10 years of 19% (95% Cl:15%-23%). My oncologist translated this as High Intermediate Risk. I have since learned that almost all Her2 cancers score high on this test.
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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03-28-2007, 10:01 AM
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#3
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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I think this is very interesting, because I thought Her2+ oncotype scores were always high. Obviously it's not so.
I had a tiny tumor (.5 centimeter) with no lymph nodes. My oncotype score was 32, which gave me a 22.5% chance of reccurrence. I had expected a lower score. My tumor was grade 3 -- cells were changing fast. Maybe that had something to do with it.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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03-28-2007, 12:02 PM
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#4
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Interesting thread. Here is my pathology:
IDC 1.3 cm, 9mm invasive, 10% DCIS, ER+ 80%, PR+ 50%, Her2+++ by IHC, Ki-67 11% (borderline normal), grade 2, Bloom-Richardson score 7, 1 positive margin; rexcision for positive margin (no additional cancer found) and sentinel node biopsy, SNB negative, stage 1, dx at age 52, postmenopausal
My oncotype score was 44, which translates into a 30% risk of distant recurrence at 10 years (95% CI: 22%-37%). However, the report also states:
"Test results should be interpreted using the information in the Clinical Experience section below, which applies only to patients consistent with this clinical experience." (emphasis added)
The Clinical Experience section reads:
"The following study results are from a clinical validation study with prospectively-defined endpoints involving 668 patients. The patients enrolled in the study were female, stage I or II, node negative, ER-positive and treated with tamoxifen." (emphasis added)
So, basically, the score is only directly applicable if you are taking only tamoxifen. Seeing as tamoxifen monotherapy has been shown to be a potential agonist for post-menopausal Her2+ bc, I question whether this result is reflective partially of that property or something else. Bottom line, there is no way to tell, and I regret having the test in light of this plus the fact that my insurer did not contract to pay for the testing until one month after my test was done and is still contesting payment for it.
The TailorX Trial that is currently under way to test the effects of chemo vs. chemo + hormonal therapy in the intermediate score group is limited to Her2- patients, which I also consider significant. I think the jury is out on how well this test works in Her2+ patients.
Sorry for the thread drift - hope this wasn't "TMI" !
Hopeful
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03-28-2007, 12:30 PM
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#5
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Guest
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Hopeful (great name),
I had originally decided to pay for the Oncogene test myself until I read on a number of sites, including John Hopkins, that the test was not done for women who are ER/PR negative and HER2 positive. It was stated somewhere (don't remember where but probably on this site) that all women with HER2 positive cancers are considered high risk. However, that seems to be contradicted by "mjz's" experience.
Nowadays I have shorter vision. After my experience with tumor marker elevations, and the stress it puts on me, I take the coward's way out and prefer not to know. My rationale is if I do everything I'm supposed to (treatment, scans, visits to doctor) it won't help me to know that I'm likely to recur in one year, two years, or ten years, or never. I hold on rather tightly to my stage 1a diagnosis, knowing that it's false courage but preferring it all the same.
I'm prograstinating big time today, writing anything but what I should be writing. I wonder if I can blame this on chemo brain!
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03-28-2007, 12:59 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Los Angeles
Posts: 430
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On my last doc visit ( last week 3/07), I requested the onctype dx test. The doctor said that is given only to women that show high risk of recurrence and are ER+ and it's a dicision test to give cerain treatments.
So reason why I did not get it and unless I insisted, would not be given.
I knwow, I feel empty handed sometimes as to what other test besides all the other stuff we do, that I can do to prevent.
MCS ( maria)
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03-28-2007, 02:08 PM
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#7
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Senior Member
Join Date: Dec 2006
Location: WHITESTOWN IN
Posts: 148
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My onc had me do the test so he would know just how hard to hit me. I'm glad I did. My score is a 42. So he is kicking it's butt hard. Still working with insurance though.
__________________
DX IDC AT 42 12/7/06
2.2CM STAGE I GRADE 2
NODE NEG
PARTIAL 12/18/06
HER2+ /ER+(75%) PR+(5%)
4 DD AC CHEMO STARTING 1/10/07
4 DD Taxol Starting 3/5/07
1year weekly Herceptin starting 3/5/07
finished 2/18/08
changed to every 3 weeks 4/23/07
completed 33 radiation treatments 7/6/07
TAH and BSO 9/24/07
start Femarra 10/8/07
Started Neritinib trial 12/14/09
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03-28-2007, 09:07 PM
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#8
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Senior Member
Join Date: Jan 2007
Location: Media (Wawa to be exact), PA
Posts: 104
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Onco score
I had the test too. At first my IHC came back 2+ or when first told to me... borderline. When FISH came back positive, I wanted some kind of "definintion" or quantative number. How positive is positive I asked? Just my luck... the score came back as a 23. My ONC.... so eloquently put it as "you are sitting on the fence. If you were 20 years older... I would suggest foregoing the chemo.... if you were 20 years younger I would be adamant about chemo" ( I am 54) So now he put the ball back in my court and I knew I had to fight this with really big guns.... no cannons. I did not ask about the probablitiy of reoccurence and really I dont think I want to know. Who needs a dark cloud over their head thinking of what might be in the future. I am living and fighting for today. Who knows, I may be run over by a bus tomorrow but at least I will not be sidetracked thinking about reoccurence when I step off the curb and did not see the bus! I plan on following the chemo and doing everything possible to not have a reoccurence. Not even half way ther tho I am curious as to what "tests" I should be having to make sure there are none???? As you can see from my signature... my pathology is clean except for the damn HER2+. What should I be expecting in the way of any tests that should be done in the future?
Keep the faith
MElinda
__________________
DX BC 12/06
tumor .9
Lumpectomy 1/8
Mammosite radiation completed 2/10
Stage1/Grade 1
clear Margins /Nodes Neg
ER+
IHC +2 Fish +
ONCO 23
Started TCH on 3/2 for 6 rounds of TC once every three weels and a year of Herceptin every 3 weeks -
Finished everything and now on Aromasin
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03-29-2007, 08:32 AM
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#9
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Member
Join Date: Mar 2007
Posts: 5
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partly why I asked... No right answers. I had a lumpectomy and axillary disection ( askek for a sentinal node biopsy but got both- even tho tumor was 7 mm IDC with no evidence of lymphovascular invasion- but that's a separate issue) So...ER+ 90% PR+ 75% HER-2 + IHC3+ ..... with an oncotypedx of 17. I read somewhere 18 gets chemo- as a rule of thumb...unofficially. I had just turned 60. My onc did not feel it necessary to do the FISH.. and I did mumble once at my first visit that I didn't want chemo...Had rads Herceptin every 3 wks for a yr. (finish Sept), Arimidex. I can only hope... All of us can only hope..
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03-29-2007, 10:13 AM
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#10
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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mjz,
FWIW, I had the same treatment as you - lumpectomy, sentinel node biopsy, no chemo, rads w/Herceptin, 5 yrs Arimidex after rads, Herceptin every three weeks continued for a full year, to end in August. Hoping is what I do best . . .
Hopeful
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03-29-2007, 04:38 PM
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#11
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Oncotype Dx
The recurrance score of the Oncotype DX, from my understanding, does not incorporate the HER2 elevation. Correct my if I am wrong. My Oncotype recurrance score was 20. (low intermediate)
Harrie
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
Last edited by harrie; 03-29-2007 at 04:39 PM..
Reason: add info
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03-29-2007, 06:08 PM
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#12
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Harrie,
The Oncotype test does incorporate Her2; there is some debate about whether it weights it correctly (the debate being it is weighted too heavily rather than too lightly). I read one interview with Dr. Paik (the inventor of the test) where someone asked him about it directly, and he said he would have to look into it. Unfortunately, I didn't print out the page and have been searching for it again ever since. I know the trial that is designed around the use of the test to determine hormone therapy vs. chemo + hormone therapy is limited to Her2 negatives.
Hopeful
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03-29-2007, 07:09 PM
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#13
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Member
Join Date: Mar 2007
Posts: 5
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According to National Comprehensive Cancer Network guidelines limited data supports that a 21-gene assay (oncotypeDx)may provide both prognostic information and prediction of benefit, or lack therof, from chemo in node negative, hormone receptor-positive bc treated with tamoxifen. ---- this statement footnotes a flow chart for systemic adjuvant treatment-hormone responsive disease-HER-2/NEU overexpressed bc. My path along this flowchart (tumor 0.6-1.0 cm, moderately/poorly diffreentiated or unfavorable features) ends with"adjuvant hormonal therapy; WITH OR WITHOUT chemo. This is why I wonder and again hope that my score of 17 -the highest number still called "low risk" supports my decision to get herceptin without chemo... and wonder has anyone else used oncotype to help decide.
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