Any Her2+ With Low Onco Type DX Score?

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Dejaboo
Dejaboo Member Posts: 2,916
Any Her2+ With Low Onco Type DX Score?

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited May 2008

    Just what the Subject is asking.

    Im hoping to find some Her2+  with a Low Score Oncotype DX ...Since I didnt have enough tissue to test.

    I am wondering if it every happens.

    If you did get a low #.  What was your stage & grade also.

    Thanks,

    Pam

  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited May 2008
  • magentagirl
    magentagirl Member Posts: 101
    edited May 2008

    I am new to all this and I don't know what you mean by low onco type score. please advise

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2008

    Pam,

    I dont know if this will help but my info is:

    IDC, 2.4 cm, node negative, Stage 2, Grade 1....her2 negative.....onco score 12...

    I had lumpectomy w/snb and 37 rads...now on tamoxifen.

    And doing wonderfully. I had my 6 month followups last week and was told I am NED :)

    Jule

  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited May 2008

    Hi Magentagirl-  Oncotype DX is a Test that can be done in CA.  for Node Negative ER+.  It will give you a # that will help assess your Recurance of BC & Help one decide to do Chemo or not.

    Some Insurances wont pay for it.   But alot will. 

    Someone else can Probably explain it better then Me- Like Otter.

    Jule,

      Thanks. Glad you had a Good Score.  Great to hear your 6 mo was NED!

     Im really looking for People with Her2 Positive that had a Low Onco score.   Im wondering if there even is any People with that. 

  • magentagirl
    magentagirl Member Posts: 101
    edited May 2008

    Thanks Dejaboo. i guess i don't qualify for an onco score now that my node turned out to be positive (the pathologist screwed up!) Is that a chocolate lab in your picture?

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited May 2008

    Hi - sorry I didn't see this thread earlier. I'm Her2+ - yet my oncologist originally told me my Oncotype DX score was "low" (he didn't give me the number). A week later, after he got the results of my Fish test showing that I was Her2+, he told me my Oncotype DX score was "intermediate". When I asked for the number, the nurse-practitioner told me 22 (or maybe it was 23). Then the oncologist said it was higher because we finally got my Fish test results which showed that I was Her2+.

    I started a thread somewhere else about how my onc himself could change the score from "low" to "intermediate" just because of the Her2+ results......and now I'm anxious to get my hands on the Oncotype DX report to see what it actually says. My onc admitted to being very aggressive treating cancer (which is what I wanted to hear) - but it does cause confusion in my mind when trying to understand how the Oncotype DX score is calculated. I need absolute honesty at all times with this disease!

    My question is the same as yours then - is it possible to be Her2+ and have a low Oncotype DX score? And must one have a Fish test done BEFORE getting the Oncotype DX results? Or does the company that conducts the Oncotype DX perform their own pathology testing on the tumor, including the FISH??

    I hope someone else can answer this question - it IS very confusing! Frown

  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited May 2008

    Hi Magentagirl- I may be wrong...But I almost think they are just starting to do an Oncotest for Node Positive....Or will be.  I think I read that somewhere.  Didnt pay alot of attention.  You could search or post the question.    Sorry to hear your Node came back Positive.

     My Avatar is  a Flat Coated Retriever.

    Swimangel-I wonder if your Onco said it was low because he felt it was low.  But then when the Her2 came back he decided with that added the # now felt Higher to him  ?  So he interepreted it different after he had all the info in.

  • Christianne
    Christianne Member Posts: 76
    edited May 2008

    Tomorrow I will find out my Onca score.  I am dreading the appointment.  I am Her positive, so expect chemo will be in my future.  I will post when I find out.  I am Stage 1, Grade 2.

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited May 2008

    My thoughts exactly Dejaboo.....but I don't really like that kind of "subjective" interpretation. I would have preferred if my onc told me the real numbers from the Oncotype DX and then explained to me about the "gray" area - instead of just saying my score was "low". This is why I really want to see the report - his office said they'll mail it to me today. It won't change my mind about my treatment.....but at least I'll know what the official report said.

    What is your onc recommending Dejaboo? If you are pre-menopausal, will you go on any anti-estrogen hormone drugs?

    Good luck tomorrow Christianne - I know that dreaded feeling.....here's hoping you get a low score!

  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited May 2008

    Yes swimangel he certainly should have told you the #.    One Onco says Tamox- even though he knows that is not safe with my heart thing.

    My Other Onco says to take Nothing... orIf I want to try something she said Zoladex (the Monthly Shot to put me into Menapause for 2 years)

    I am considering that.

    Good Luck tomorrow Christianne- I am hoping for a Low score for you!

  • Christianne
    Christianne Member Posts: 76
    edited May 2008

    Thanks for the good luck wishes.

    Ok, I got my Onco results today.  My oncotype score was 20, which is in the bottom of the intermediate range.  My oncologist said my risk for recurrence in the next 10 years is 12% and that chemo would only reduce my risk to 9%.  He didn't think it was worth it.  Another way to say this is that 97 out of 100 women would do no better with chemo and only 3 would benefit.  And my doctor felt that the side effects and risks of chemo would outweigh that 3%.  So even with a high Her-2 score, which he said is factored into the oncotype test, I didn't get a high risk score back.  I was very, very relieved--I totally expected to be in the high risk range.  I will start Tamoxifen and be closely monitored.

  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited May 2008

    Hi Chistianne

    Thanks for posting your score.   That isnt much benefit that you would gain from the Chemo.   Good that you can take Tamox.

    Did he say how much benefit you will gain with that?

  • otter
    otter Member Posts: 6,099
    edited May 2008

    Swimangel (and Dejaboo, and others), I don't normally hang out on this thread since I'm not HER2+, but I saw your question about your HER2 report and your Oncotype score:

    "...is it possible to be Her2+ and have a low Oncotype DX score? And must one have a Fish test done BEFORE getting the Oncotype DX results? Or does the company that conducts the Oncotype DX perform their own pathology testing on the tumor, including the FISH?"

    Yes, it is mathematically possible to be HER2+ and have a low Oncotype score.  The formula for the Oncotype recurrence score contains weighted results of tests for the expression of genes in 7 different "gene groups".  Results from 4 of those gene groups add to the recurrence score; results from 3 other groups subtract from it.  HER2 is in one of the groups that increases the score, but so are other genes like Ki-67.  ER and PR are in a group that subtracts from the score.

    So, it's all very complicated; but theoretically, even if the HER2 result was positive, it could be counterbalanced by high numbers in the "subtractive" groups or low numbers in the other "additive" groups.

    And, no, it is not necessary to have a HER2 test result before the samples are sent for Oncotype testing.  It's my understanding that only the size of the tumor, a positive result for ER, and negative nodal status, are necessary.  Nodal status may be changing, but our insurance companies are not even keeping up with reimbursement for testing on node-negative tumors.

    Genomic Health does test the tissue for HER2 as a part of Oncotype testing, but they don't include those results with their report.  They only include the Oncotype recurrence score and the ER and PR results.  You should be able to get a copy of the actual test report--it's part of your medical record, and it includes an interpretation of the results.  There is also lots of stuff available on-line, including on the Genomic Health website, that explains the test and its interpretation.

    otter 

  • Christianne
    Christianne Member Posts: 76
    edited May 2008

    Dejaboo,

    You asked about how Tamoxifen would affect my risk recurrence.  The Onco results assume you will take Tamoxifen, so it is factored into the score.  In fact, it says right on the results sheet that the scores/risk recurrences were based on the study that produced these scores by women who were taking Tamoxifen.

  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited May 2008

    Thats right Christianne,  I forgot thats how it is done.  Ok- thanks!

    Your avatar is so relaxing.  I wish I was there

  • vam923
    vam923 Member Posts: 2
    edited May 2008

    I am ER+/PR- and HER2+, and my oncotype score was 39... pretty high.  My onc explained that because of the HER2+ and PR- status, it would return a fairly high number.  However, I did have 4 rounds of TC followed by a year of herceptin, which will be completed this September.  I had a very small cancer (0.5 cm), but I had signs of lymphovascular invasion.  Even though my pathology returned as low-grade, the oncologist felt it was important to treat the heck out of the cancer, since I was only 28.  I am currently on lupron, tamoxifen, and herceptin.  I think my chance of recurrence is somehwere between 5 and 7% after all these treatments.

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited May 2008
    Thanks Otter for the explanation of the Oncotype DX scoring.....as usual,  you were a big help! Smile
  • Northstar
    Northstar Member Posts: 89
    edited March 2009

    I was looking through this forum since I have a friend who is Her2+.   I went with her to a meeting with her medical oncologist, who said that they have stopped sending out tissue samples for Oncotype Dx testing if you're Her2+, since it adds about 12 points onto the score and almost invariably puts you into the intermediate range,  or higher, where she would suggest chemo. 

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited March 2009

    Northstar - after nearly a year of treatment with Herceptin and online research about Her2+ cancers, I found out that the latest studies are saying ALL Her2+ tumors, no matter how small, need to be treated with Herceptin because of the aggressiveness of this type of tumor. Tell your friend she can get a ton of information about Her2+ breast cancer at www.her2support.org.

  • Northstar
    Northstar Member Posts: 89
    edited March 2009

    Yeah, I guess the onc's point really was that all Her2+ people need chemo and Herceptin.    Herceptin sounds like an amazing drug. 

  • jeanbean
    jeanbean Member Posts: 61
    edited April 2009

    Hi,

    My oncologist told me that HER2+ "trumps" the oncotype score because they are generally more aggressive cancers. They would generally recommend chemo if you are Her2+ so the oncotype score is not that helpful. I guess a lot of the genes they assay for the oncotype are Her genes so my guess is it would be high if you are Her2+. My Her2 was "equivocal" and I'm waiting for a "FISH" test. If positive, then chemo. If negative, then Oncotype will be done.

  • mattscot
    mattscot Member Posts: 69
    edited April 2009
    After testing on the FISH borderline Her2 postitive my oncotype cam back at 16   a pretty low score and  a Her2 negative result.     It is suggested by Genomic health  that the oncotype test should be used in the equivocal situtation---  I ended up going forward with Herceptin even tho I am probably Her2-
  • Omamori
    Omamori Member Posts: 1
    edited June 2009

    Oncotype DX is definitely doing node positive. They are a great company.  I had double mastectomy on May 8th.2009. Left had two tumors 2.2 and 2.7 cm with microscopic bridge so they added them together to make 5.5 cm (count space between). Right breast had odd things but no cancer found on tests but I decided to have both removed. Right simple mastectomy Left modified radical. No reconstuction. My age 62. Negative sentinel node but surgeon felt odd node so removed 13 lymph nodes..1-6 clean 7th had cancer cells, 8-13 clean. it was tan. so that made me 1//13..thus node positive. Insurance company refused payment because of the 1 positive node. Contacted  Onco company..they will do appeals to insurance company but said if I met financial guidelines they would not charge for part insurance wouldn't pay and if appeals failed...pro bono.

    They are a great group of people truly trying to help women with breast cancer. So test was done. Because of the size of my tumor and the node..doctors were talking radiation, hormone and chemo. My Oncotype DX came back 16. Please note my oncologist told me she was certain it was going to come back high, surgeon thought it would come back low. But I am a 16 and with a 16 I definitely do not feel the damage chemo would do to possible cancer is worth the damage it would do to my body and immune system. If you are node positive and don't make over 40-50,000 a year...you should contact them or have your oncologist contact them.  They truly will try to help you get the test.  The test company is Genomic Health in California

  • Mona-Me
    Mona-Me Member Posts: 15
    edited June 2009

    I too was subjected to the Onco/DX test that was sent off to California; they contacted my oncologist and said they did not receive enough specimen; so another was sent.  Well, my Onco/DX test came back low risk.  I was already considering chemo/Herceptin, but when I went back for appointment for the results, she told me I could start taking radiation/Tamoxifen.  Then the following week she calls and tells me that the other doctors still would recommend doing Chemo/Herceptin.  Needless to say, I was very upset about these circumstances; having a trust issue with that doctor now.  I finally made the decision to go with the less aggressive recommendations, which were for radiation treatments (33), and then go on Tamoxifen for five years.  I am very comfortable with my decision.  Has anyone else gone through this type of situation?

  • amyob
    amyob Member Posts: 99
    edited October 2009

    My surgeon has suggested the oncotype test, but my "1st opinion onc." will not recommend the test, with good reason I suppose.  Since my IDC was only 1 mm and I am struggling with treatment decision, I was hoping the score would help me decide.  He is recommending Tamox only and I'm sure the test results would probably suggest otherwise.  I'll see what my "2nd opinion onc." suggests, but since there don't seem to be many women out there who are Her2+++ and pT1mic, maybe I should insist on the test.  If only as an experiment...Any opinions?   

  • KorynH
    KorynH Member Posts: 301
    edited October 2009

    I was told that Herceptin is most effective when given with chemo therapy (as shown in the studies done) and for triple expressed Her2+++ (that is different than triple positive BC) , I wasn't going to take any chances. He told me the onco type test is to see if you are a candidate for chemo therapy and that given the fact that I was  Herceptin candidate, it would not serve me any purpose. Does this make sense?

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited October 2009

    Yes KorynH.........since you are Her2+++ you know already that you'll need chemo and Herceptin so there's really no need for the Oncotype DX test. My onc sent my tumor out for Oncotype DX BEFORE he received the results of my FISH test - somehow the FISH test got lost in the shuffle while my breast surgeon was moving his office. Even though my score was a 22, my onc said I didn't need chemo - however, once the FISH came back with Her2++++, he said I had no choice not but to get Herceptin with chemo for a year, even though my tumor was smaller than 1cm. I'm happy now I listened to him - I'd hate to think that sneaky Her2+ BC was trying to stage a come-back somewhere else in my body!

  • amyob
    amyob Member Posts: 99
    edited November 2009

    I am sorry to veer from the question about Oncotype score, but swimangel, are you absolutely sure that chemo and Herceptin are needed if you are Her2+++?  Even the MD Anderson study doesn't include pT1mic.   

    2008 ASCO Annual Meeting
    http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=55&abstractID=31920
    Tmic is considered a separate pathologic entity with good prognosis, but its clinical significance and management remain controversial. 

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