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NEW Oncotype Dx Roll Call Thread

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Comments

  • aug242007
    aug242007 Member Posts: 186
    edited September 2009
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    To Everyone,

    I just saw a research oncologist at Vanderbilt Medical in Nashville (one of the top research facilities for cancer).  She agrees with my treatment plan for a 2.2 cm IDC Grade 1, Oncotype 11 that no chemo was a good decision in that it would only have given me a 1% better chance of no recurrence or mets. 

  • magob
    magob Member Posts: 242
    edited September 2009
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    Samiam - Many thanks to you for getting this thread going.  I kow it sure did help me when I had to decide.  Hopefully, someone will carry the torch from here. (You don't want me doing it - I am the WORST organizer right now. Foggy head x10.)

    ANY TAKERS? 

  • Luna5
    Luna5 Member Posts: 532
    edited September 2009
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    Aug....Did she recommend any other treatment like Tamox or AIs?  I'm still struggling with that decision with an Oncotype score of 0.  Anything else she said that would help shed light would also be greatly appreciated.  I know the research keeps changing the recommendations.

  • KorynH
    KorynH Member Posts: 84
    edited September 2009
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    I noticed that someone commented stating that Oncotype testing was not recommeded for Her2+ cancers? That would make sense to me since I was triple overexpressed Her2Neu+++ and also er+/pr+ , and they never even offered it, but does that also mean that I am a no brainer off the charts cancdidate for recurrence? I guess I should ask my doctor this but I just changed oncologists and haven't had the chance yet.  Then again, sometimes it seems they don't want to over alarm you either so they won't commit to how high a risk for recurrence you are. Am I over thinking all of this?

    Thanks

  • samiam40
    samiam40 Member Posts: 93
    edited September 2009
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    Dawnm has graciously agreed to take over this thread from me.  A BIG thank you to Dawnm.  Please post on the new thread entitled " *New* ~OncoDX~ Roll Call~*New*" as this thread is now considered closed.  Thanks everyone for your patience.
  • Rachelb274
    Rachelb274 Member Posts: 14
    edited September 2009
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    Toni, I am with you on this.  I feel like the odd one out, but I would prefer to do chemo just in case I am that "1".  My onco test comes back on 9/22 and I am dreading the appointment because I feel like I have my mind made up.  I guess after 3 health care pro's couldnt even feel my lump when I put their finger on it, I am going with my gut too.  Thank you for your post!

    Rachel

  • cabmom
    cabmom Member Posts: 291
    edited September 2009
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    aug....do you happen to know the website that you saw that article.  I'd love to read whatever she had to say about the oncotype dx testing.  Some doctors really believe in it and some just do not.....this is such a hugh decision.  I have been looking at anything and everything related to this topic.   Thanks!

  • aug242007
    aug242007 Member Posts: 186
    edited September 2009
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    I am also on AIs. Now on Femara after taking Arimidex for almost 2 yrs.  The Oncotype research can be googled easily and  www.lbbc.org has some great newsletters on the 2009 and 2008 San Antonio meetings and the Annual Meetings of the American Society of Clinical Oncology meetings which give great info on the Oncotype.
  • cabmom
    cabmom Member Posts: 291
    edited September 2009
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    Aug242007, thanks so much for the website and additional information.  Just hoping to make the right decisions........hard to really know sometimes what the right decisions are.

  • MaryNY
    MaryNY Member Posts: 486
    edited September 2009
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    Just in case anyone missed them, there are two very useful posts on the parent thread, posted as stickies, which have some very useful tips for those undergoing chemo:

    Tips for getting through chemotherapy 

    More Tips (and a Shopping List) for Getting Through Chemo 

  • judimac
    judimac Member Posts: 1
    edited September 2009
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    you for doing this. 

    My score, etc: 12, All nodes removed, RM, AMDX 

  • KarenVW
    KarenVW Member Posts: 39
    edited September 2009
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    Hello Ladies!

    For those of you doing both radiation and hormone therapy during the Tailor X trial, are they recommending you start hormone therapy while doing radiation?  Or are they recommending you wait after radiation to start hormone therapy?

    I understand their is difference in opinion amongst the medical community on this topic and am curious what they are doing in this trial.

    Thanks!

  • samiam40
    samiam40 Member Posts: 93
    edited September 2009
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    A BIG thank you to Dawnm for taking over this thread.  Please post on the new thread entitled " *New* ~OncoDX~ Roll Call~*New*" as this thread is now considered CLOSED.  Thanks everyone.
  • Helen-Jackie
    Helen-Jackie Member Posts: 4
    edited September 2009
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    hi pix stix

    I had an onco score of 16 -10% rate of recurrance.. However my onc is miffed what to do.. i resent this as i am losing time waiting for him to know. I am in a grey zone because I had lvi. lymphatic vascular invasion and that isnt part of the onco testing. do u know if you had it? it would be indicated on your pathology as either absent or present.

    I would be curious what the second opinion said. I am going for one on wednesday.

    my tumour was 1.2 cm though

  • valiossifova
    valiossifova Member Posts: 2
    edited October 2009
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    Hi Helen, how are you doing? What did the second opinion tell you?

  • Helen-Jackie
    Helen-Jackie Member Posts: 4
    edited October 2009
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    hi

    well i went for two second opinions. in the end it seems they were all saying the tamoxifin and rads were enough..they said the benifit from chemo was not worth the risks.. they were really close at 3% so nogo .. i feel odd without it but just started tamox today.. how are u

  • valiossifova
    valiossifova Member Posts: 2
    edited October 2009
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    Hi Helen,

    I just started radiation therapy but I still feel that there was something more I could have done. I feel like doctors are afraid to give their opinion because of the chance of being sued. Some are more thorough and want everything for their patients, and others are more laid-back. All I want to know is from their clinical experience, what do they think?

  • aprilgirl1
    aprilgirl1 Member Posts: 782
    edited November 2009
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    What happened to the newer new oncotype dx roll call? I have a friend waiting for her score, and she couldn't find the rollcall.....

    I think someone started a newer one?  Anyone know where it is?

  • don23
    don23 Member Posts: 213
    edited November 2009
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    I think this is the newer one.

  • Lindissima
    Lindissima Member Posts: 37
    edited November 2009
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    April and Don,

    This is the original thread.  "The NEW Oncotype Dx Roll Call NEW" which Dawnbelle took over from Samianm seems to have disappeared. I tried clicking on my saved links and doing  a search-- but nothing, nada.

    Perhaps the newer link was deleted in error.  Samian 40 is no longer manging this thread.  I will PM the moderators. 

  • Lindissima
    Lindissima Member Posts: 37
    edited November 2009
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    I'm still looking for "the NEW Oncotype Dx Roll Call NEW" thread which Dawnbelle took over from Samiam40.

    Has anyone seen it? 

    Thanks. 

  • moderators
    moderators Posts: 8,272
    edited November 2009
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    I'm seeing what I can do to re-find. Dawnbelle asked to be deleted from the site, so all her posts went with her as well. 

    I'll need a few hours time, but will try and dig.

    Sorry!

    Melissa 

  • aprilgirl1
    aprilgirl1 Member Posts: 782
    edited November 2009
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    thanks Melissa!

    I didn't realize that Dawnbelle asked to be deleted.  In my opinion, the oncotype dx roll calls are extrememely helpful to the women that have the oncotype test.  I think it is a great cross section of women, scores and decisions.

  • cookiegal
    cookiegal Member Posts: 527
    edited November 2009
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    Just got score yesterday of 22. I was really hopeful it would be lower since KI67 was low. I also have a positive node and am 42.

    This is a tough call for me. From the beginning I have been very apprehensive about chemo. Never worried about dying, just chemo. I had a small tumor and a clean pet scan so I expected to be node negative, but was not.

    Then onc said he did not think I would need chemo, thought score would be low. With 22 he is recommending CMF, but says I still have some discretion.

    I also have some complicating factors that might make hormonals not work for me, so that tips the hat a bit more towards chemo.

    Will meet with onc on Tuesday, I always thought if I had a no chemo choice I would pick it, but now I am leaning towards doing it.

  • aprilgirl1
    aprilgirl1 Member Posts: 782
    edited November 2009
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    cookiegal - my score was 23 and I did CMF.  In case you don't know, there is a CMF thread in the Forum "Help me get thru treatment".  CMF was very doable for me although my onc. does it weekly - so I had 24 weeks of infusions (short infusion time and no port).  Most women on the thread had 8 ot 12 infusions.  Lucky me!  Feel free to PM me if you have any questions!

  • cookiegal
    cookiegal Member Posts: 527
    edited November 2009
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    April gal, that is very interesting. I will put on ask the doctor list. Does it cut down on SE's?

  • MezNY
    MezNY Member Posts: 3
    edited December 2009
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    I was dx in Aug. Had a lumpectomy. Deciding what to do next. Onco Test 11, 2cm and grade 3. Onc suggest chemo 4 treatments. I am confused on what to do...Chemo or rad and tomoxifin

  • cabmom
    cabmom Member Posts: 291
    edited December 2009
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    cookiegal, I was a 19 Oncotype and was 43 when diagnosed.  I am doing CMF.....I didn't want to take any chances :) but it was a really tough decision for me!  Good luck and I'm here if you have any questions.....

  • marlenet
    marlenet Member Posts: 114
    edited December 2009
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    MezNY

    It is a tough decision.  I decided too have chemo for a couple of reasons.  I wanted to do whatever I could to prevent this from coming back and my age. and  I was 44 when dx.  One week before my 45th b-day.  Now as I set one year out I am still pleased with my decision!  Good luck to you.

  • PatMom
    PatMom Member Posts: 322
    edited February 2010
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    Bumping for Val5

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