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NEW Oncotype Dx Roll Call Thread

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  • Seabee
    Seabee Member Posts: 38
    edited April 2009
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    Hi, Sarahfromuk--Is your tumor IDC or ILC? Your Oncotype score may or may not make your decision about chemo easier, but at least you'll have more evidence to consider.

  • cw89134
    cw89134 Member Posts: 62
    edited April 2009
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    Seabee,

    The physician who is uncomfortable with my having chemo is my breast surgeon. He runs a kind of "one stop shopping center" for all things breast. One of his "quirks" that I alluded to is that he doesn't think I need to see an oncologist because, he says, he is a "surgical oncologist". I'll take his word for it but I do plan on consulting a medical oncologist to get a second opinion.

    It's a long story. I did actually see a medical oncologist back when I was first diagnosed. There was a "personality issue" (for lack of a better term) between the MO and the BS and, since I decided to stick with the BS, I haven't seen the MO since. However, once the BS removes this darn Contura balloon after the 10 treatments are over (hopefully on Thursday 4/23), I will email the MO, explain what has occurred since my first visit (at which time he hardly had any of my records) and set up another appointment with him primarily to discuss the Oncotype DX results as well as followup.

    Thanks for the reply.

  • samiam40
    samiam40 Member Posts: 93
    edited April 2009
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    cw89134 and encoremom -- thank you for sharing your scores and treatment decisions.  You have been added to the rollcall.

    Seabee, not all chemo is debilatating.  Some of us find it to be managable.  I am on the CMF regimen which is particularly doable, has no long term side effects and minimal short term SEs.  I would in no respect describe it as debilitating.  My only concern is that people who do contemplate doing chemo not be unnecessarily scared.

    I have no idea why my text is insisting on being in italics.  I tried to de-italicize and it won't do it. Sorry!!!

  • florbo
    florbo Member Posts: 32
    edited April 2009
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    Hi Everyone,

    My oncotype score is 19 (12%).  I had a LM, R (DIEP reconstruction ) and T/C for 4-6 which started on 4/3/09.

  • samiam40
    samiam40 Member Posts: 93
    edited April 2009
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    Welcome florbo.  Hope your T/C treatments are going well.  I have added you to the rollcall.

  • sarahfromuk
    sarahfromuk Member Posts: 4
    edited April 2009
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    Hello again.  Have got my Onco DX score today.  It was 17 which places me at the top end of the low-risk category.  My oncologist is reported to be comfortable to leave chemo out of the mix although I have a horrible feeling he is going to try and scare me with statistics and leave the decisions to me.  Ah well.  Any thoughts?

  • samiam40
    samiam40 Member Posts: 93
    edited April 2009
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    Sarah, you could go either way and it would be a good decision.  A score of 17 puts your risk of distant recurrence at about 11%.  Conventional wisdom is that you would drop that risk 1-2% by doing chemo before you start hormonal treatment (tamoxifen). 

    Here in the US they are doing a clinical study called TAILORx that randomizes people with mid-range scores (11-25) into either a chemo group or a non-chemo group.  Hence they are trying to determine what the real benefit is to people with mid-range scores. 

    It is a decision that can really only be made between you and your oncologist, and hopefully won't be influenced too much by what others on internet message boards have decided to do.  You said you really, really don't want to do chemo.  If your onco supports that, then that's probably the right decision for you.  Good luck to you, please post a follow-up if you have any specific questions, and let us know what you decide to do.

  • Luvmaui
    Luvmaui Member Posts: 57
    edited April 2009
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    Please add my name to the Roll Call.  I'm sooo excited!  My med. oncologist called yesterday with the news that my OncoDX came back and it's a beautiful 12........NO CHEMO!! Laughing 

    The past two months have been very scary and I was very afraid to have this test done, but I'm so happy I did, and I'm beginning to see the light at the end of the tunnel.  I begin radiation next Monday then Arimidex for 5 years.

     LIFE IS GOOD!!! 

  • brenda63
    brenda63 Member Posts: 7
    edited April 2009
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     My onc score was 21 and I am still leaning towards no chemo.  He told me he thinks I should do chemo to go after the cells that might have gotten loose,  So my ? is...  Why would someone in either groups in the scoring make any difference in doing chemo..... . If his reasoning is to go after the cells that got away.. to me, we all have that chance of that happening, so that is why I am confused on him wanting me to do chemo. I need to ask him that ?. I think the odds of the SE are not worth taken. Going crazy. Its bad enough that I am nerves about taken Tamoxifen let alone chemo too!!!!! Money mouth
  • luckyrabbit99
    luckyrabbit99 Member Posts: 1
    edited April 2009
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    Hi,

    I start 4 rounds of T/C chemo on the 29th of April.  My Onco DX score was 26 with 17%. 

  • sarahfromuk
    sarahfromuk Member Posts: 4
    edited April 2009
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    Samian40 - thanks so much for your feedback.  We are light years behind you here in the UK, I am one of the first to have the Onco DX test here and I had no idea what my 17 score really meant.  I am looking at a two week wait before I see my oncologist again - I think I am no longer a priority!  I find the waiting very difficult.  I have friends, one of whom has had everything thrown at her, and still her chance of long-term non-recurrence fails to reach 50%.  Another friend with a triple negative tumour has had her long-term non-recurrence stats boosted to about 85% by chemo and radio.  At risk of sounding dull beyond belief, I am just so grateful that I have been given the odds I have without doing chemo.

  • Seabee
    Seabee Member Posts: 38
    edited April 2009
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    Samiam--Please note that I didn't say chemo was always debilitating. I said it was often debilitating, and of course I should qualify that by saying in varying degrees.  It is certainly true that some chemos are more tolerable than others, but I've yet to see anyone claim that doing chemo was fun, and to me anything that weakens my immune system is in some measure debilitating. In that sense rads (which I've just finished) are also debilitating. Anything that impairs my ability to remember and think clearly is debilitating. Surgery (particularly the AND) is debilitating. Fortunately, all of these effects normally diminish with time, but it's a question of how much inconvenience and discomfort one finds acceptable for a 1-2% possible gain.

    If you have much more to gain, or are determined to try everything, of course you do it, and there's no reason to be any more afraid of it than of any other treatment, because most people tolerate it very well.

  • samiam40
    samiam40 Member Posts: 93
    edited April 2009
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    I have added ikat and luckyrabbit99.  If you want to add more information about the specific treatments that you have chosen to undergo, please let me know & I will add it.

    Sarah, I agree that those of us with low oncotype scores are very, very fortunate.  I am also grateful that such outstanding medicine is available so that most people with poorer prognoses can achieve a significant risk reduction with appropriate treatment.  It's not such a bad thing to have two weeks to research and think of questions before your onco appt.  I actually had my 2nd opinion with an oncologist way too early--before I even had received my oncotype dx score--so it was of limited utility.

  • aprilgirl1
    aprilgirl1 Member Posts: 773
    edited April 2009
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    Sarah and Brenda - my oncotype score was 23 - being in the gray intermediate zone is tough.  My oncologist wanted me to either do the Tailor X trial or CMF chemo - and preferred that I do the chemo.  Brenda - I was 44 when diagnosed (birthday in April) and age did factor into the oncologists reasoning.  I am happy with my decision and about 2/3 done with the chemo.  Have not really had any side effects besides being more tired and feeling funky the day after infusion.

    I know of women with my score who chose not to do chemo and head straight to the next step.  I think it is a very individual decision and a lot of things factor into it.  

    Thank GOODNESS for this oncotyping and this thread.  I am so happy I had additional information to make my decision.

    I also had two opinions, which both agreed for what that is worth.  I was happy to have a 2nd opinion.

    Good luck with which ever path you chose!  One thing is for sure, there are great resources here for all of the remaining steps whether it is chemo, radiation, or hormone therapy.

    Susan

  • sarahfromuk
    sarahfromuk Member Posts: 4
    edited April 2009
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    April girl - I agree and seem to have a number of similarities in situation to you.  I was 44 at point of diagnosis and my tumour was ER+/PR+, HER2- .  The initial idea from my oncologist  with me was to throw chemoa at it as I am a single mother of four young children.  I am going to elect to not do chemo - oncotyping may put me at the top end of the low risk category but I am in it and it feels right to me.  Having said that those I have spoken to who have been through chemo have said it is nothing like as bad as they feared.  Good luck to you too - it sounds like you are doing a great job of coping with the chemo.

  • sherrilynne
    sherrilynne Member Posts: 5
    edited April 2009
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    I just received my score of 12 today from test.  I'm glad that it's low.   My Oncologist is still recommending 4 rounds of chemo because I'm 47.   I am to start on May 1.  

  • PatMe
    PatMe Member Posts: 30
    edited April 2009
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    My oncologist office called today with my score- it was a 23. The nurse said she is sure that my Dr will want to do chemo. This has really thrown me for a loop. I was just sure it was going to come back with low numbers. I have an appt Monday morning. So I guess I'll find out then what kind of chemo.  I think that means I have a 15% chance of distant reoccurence. Can some one tell me what that really means? 

  • cw89134
    cw89134 Member Posts: 62
    edited April 2009
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    PatMe,

    A score of 23 is in the intermediate range. My score is 24, very close to yours.

    The report (which you should request a copy of) says that with a score in our range, the rate of distant recurrence at 10 years for patients taking Tamoxifen only is 15%. So, instead of putting me on Tamoxifen, my breast surgeon has put me on an aromatase inhibitor (Arimidex) which, he says, cuts that risk in half - that is to 7.5 %. Chemo would cut my risk to 6%. Therefore, for me, chemo would buy me (maybe) 1.5% better odds of not having a distant recurrence in 10 years.

    There are a lot of factors that go into the decision of whether to do chemo or not when a score is in our range. Age is one factor. How old are you? I'm 62. Other factors are tumor characteristics and size. I see yours is a grade 2. Mine is too. I'm also ER+/PR+ and HER2- as you are. My tumor was under 2 cm. I see that yours is 3 cm.

    I have an additional complicating factor in that I have a neurological disability which could become potentially worse with chemo; so says my breast surgeon anyway. I will be seeking a second opinion, from a medical oncologist, on my case because I'm not entirely comfortable with one physician telling me that chemo isn't necessary.

  • PatMe
    PatMe Member Posts: 30
    edited April 2009
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    Thanks CW.  I do have a copy of the test results. But I'm 58 so I'm pretty sure I won't be on Tamoxiifen. So I wasn't sure what it mean for me. Your surgeon is advising you on chemo?  Mine won't even discuss it with me. He says that's my onco's little red wagon. I'm not real fond of my breast surgeon. I asked him on my last visit if my incision would smooth out and he told me maybe and maybe not. That was it. Then I asked him about a masectomy bra and he said NO.and walked out the door.I think this man needs to retire.

    Sorry I  know this thread is not about surgeons. But I am just so frustrated with him. He has never told me anything. If it wasn't for this forum I wouldn't have know there were exercises that I needed to be doing or that I needed to milk my drains. He asked me if I was putting on the antibiotic ointment and he had never given me any. Oh well, I'm almost through with him anyway. .

  • cw89134
    cw89134 Member Posts: 62
    edited April 2009
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    PatMe,

    I actually have an excellent relationship with my breast surgeon. Having said that, he is somewhat unusual. That's a polite way of putting itWink. He says he is a surgical oncologist and that he can follow me as well as a medical oncologist. I trust what he says but I would be more comfortable having both physicians on my team, especially because the surgeon is a sole practitioner (not in a group) and is not a young man. Also, two heads are almost always better than one!

  • Seabee
    Seabee Member Posts: 38
    edited April 2009
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    PatMe--Let's face it, a lot of doctors are overbooked, which I ascribe mainly to greed, though most of them are poor office managers as well. My PCP is beginning to get overbooked, so he is having trouble keeping up with my dealings with specialists. Surgeons tend to be poor communicators in my experience, though my bs (a woman) is an exception; she is also very good, overbooked, and overextended. (She has an administrative job as well.) Still, she did venture the opinion that my decision not to do chemo was "rational."  My rad onc is the most talkative of the three specialists, and he told me flat out that he thought I had made the right decision. He said that before the Oncotype test they prescribed chemo knowing very well that many of the patients didn't need it, and that the research behind the Oncotype test was more extensive than the research behind any given chemotherapy regimen. The med onc is the most conservative of the three, and the least talkative, but he's a good listener and very meticulous, and he's tolerant of, if not entirely comfortable with, my ideas. And I did choose him over two other candidates.  It's important to have a med onc you can work with.

  • kt57
    kt57 Member Posts: 75
    edited April 2009
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    Hi Ladies:   Do you know what surgeons and sperm have in common???   They have a one in million chance of becoming human.   That's a nurse joke-----

    I am lucky - my breast surgeon was awesome.  She was very business like ..  not overly personal - but was very thorough in explaining everything, excellent reputation, awesome surgical technique -- two incisions, one I can't even see anymore.   I think most surgeons feel their role is technical - removing/repairing diseased tissue. She explained the roles of the medical and radiation onc -- I think so I didn't ask her questions that were better answered by those experts.  That was helpful. 

  • mellybell
    mellybell Member Posts: 3
    edited April 2009
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    Great info.  Thanks for collecting.  Below is my info to add:

     Oncotype score - 25

    LMP, SNB, T/C x 6, RAD x 35, TMXF

  • mellybell
    mellybell Member Posts: 3
    edited April 2009
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    Opps.  Forgot to include the recurrence rate.  Guess I don't want to think about it.  It is 17%.

  • moodyk13
    moodyk13 Member Posts: 8
    edited April 2009
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    Hi everybody!  It really stinks that our list is growing, but it is really cool how many of you wonderful people are participating with the info gathering!

    I am so grateful to samiam continuing this thread because it is so evident it is helping so many women find advice and support here.

    You guys stay cool, and keep up the excellent work here!

    Love to all!

    Karen

  • mellybell
    mellybell Member Posts: 3
    edited April 2009
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    Thanks for keeping the roll call going.  Would you please add oncotype score 25 to my listing.

    Thanks much.

  • Sukiann
    Sukiann Member Posts: 88
    edited April 2009
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    Just got the results of the test.  I was hoping it was going to be lower but it turned out to be 32.  I have to ask my oncologist if this test still applies to me since I have a micromet in my sentinel node - it was 0.5 enough to call me node positive.  So, add me to the list!!  Thanks!

  • samiam40
    samiam40 Member Posts: 93
    edited April 2009
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    I think I got everyone added.  Feel free to let me know if I've missed you, either by pm or posting, or if you want to update anything. 

     Thank you to everyone for sharing your scores and treatments, thereby becoming a helpful resource for the newly diagnosed.

  • puppers
    puppers Member Posts: 12
    edited May 2009
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    I got my score Tuesday - 18, 11%  (LMP, SNB, RAD, AMDX)

  • Seabee
    Seabee Member Posts: 38
    edited May 2009
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    Sukiann--the Oncotype test is now available to node positives with 1-3 nodes, and your score indicates that you would benefit from chemo  to about the same degree as if you were node negative. One of the benefits of the oncotype test is that it either confirms or challenges the idea that someone who is node posiive will benefit from chemo.