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NEW Oncotype Dx Roll Call Thread

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  • Sukiann
    Sukiann Member Posts: 88
    edited May 2009
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    I just want to say that I am really bummed out that my score is so high.  The whole time I was waiting for it I was sure I was going to be in the "gray" area and not know whether or not to do chemo.  Then came the micromet which said "yes" and now a 32 score.  I think I read that the recurrance rate means a certain percentage chance that the cancer will recurr in a "distant" site?  So this mean chance of metastisizing???  Am I reading this right?

  • cw89134
    cw89134 Member Posts: 62
    edited May 2009
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    Sukiann,

    Do you have a copy of the report?

    The first page shows a graph that gives the patient's rate of a distant recurrence at 10 years after five years of Tamoxifen treatment. A score of 32 gives an approximate rate of 22-23%. There are other graphs that show chemotherapy benefits for both node negative and node positive patients. Those graphs are on the second and third pages. For node positive patients, the graph on page 3 shows different statistics for different groups of positive nodes -- (a) 1-3 nodes w/ tamoxifen alone and also with tamoxifen followed by CAF chemo and (b) 4 positive nodes or more with tamoxifen alone and also with tamoxifen followed by CAF chemo.

    It's very difficult to visualize without the report in front of you. Here is a link from Genomic Health's website:

    http://www.oncotypedx.com/HealthcareProfessional/ReadingReports.aspx?Sid=17

    Click on the sample report. Unfortunately, it's not totally up-to-date. It only shows statistics for node negative patients. However, the current reports (Mine was generated on 4/9) do show statistics for both node negative and node positive patients. It would probably be worthwhile to get a copy of your report if you don't already have it.

    I hope this is of some help to you.

  • jeanbean
    jeanbean Member Posts: 4
    edited May 2009
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    Sukiann,

    I'm so sorry your score was high; I'm sure that's very discouraging and scary. The recurrence rate is for the risk of developing a metastasis within 10 years. The good news is you can significantly reduce that risk with chemo (I know that's of little comfort; not something any of us wish for). Have you met with your oncologist yet to discuss the results?

  • NST40
    NST40 Member Posts: 6
    edited May 2009
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    I have a few questions.  I am newly diagnosed with multifocal IDC, grade 1, stage I.  My largest tumor 1.1cm in size.  I just got my onoctype score and it is a 15, 10%.  I had a BLM two weeks ago with no lymph node involvement.  I will see my onco next Friday.  I would like any opinions on need for Chemo. or Radiation.  First my Dr. said no Radiation and now she wants me to see a radiation oncologist to help make that decision and she mentioned TC x 4 if my oncotype came back above 11?  I am not against Chemo but would prefer none due to possible long term side effects.  Also what determines if you need Radiation?  Please Help.

    NST40

  • lynninpa
    lynninpa Member Posts: 5
    edited May 2009
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    Hi, I got my oncotype score yesterday so to whoever is maintaining the statistics, feel free to add mine.  Also to all the people on this thread, especially those who started/maintain this thread, THANK YOU.  I do not post much but rely on this site heavily.  You are all my heroes!

    Oncotype = 18.  Lumpectomy right breast, sentinel node biopsy,  will go in for radiation (not sure how many courses), will have lupron and tamoxifen.  No chemo.  

  • samiam40
    samiam40 Member Posts: 93
    edited May 2009
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    NST40, when you meet with your onco on Friday, you should certainly express your preference not to do chemo.  With a oncotype score of 15, it would be an extremely rational decision to elect not to do it, since statistically chemo is thought to reduce your recurrence risk by approximately 2%.  When your score falls into the gray area like that, you could go either way (chemo or not) and both would be a good decision--it is whatever makes you comfortable and able to sleep at nights.  I had an oncotype lower than yours and elected to do chemo--however that was my preference.  My doctor didn't pressure me either way.

    My understanding of radiation, although I have not had it myself, is that it is usually only recommended in the case of a BLM when the margins following surgery are not clear (cancer too close to the outside edge where tissue was removed), when there is lymph node involvement, or for extremely large tumors.  Typically, if you have a BLM, good margins and no lymph node involvement, rads are not recommended.

    Good luck to you and to lynninpa.  You are both added to the rollcall.  Thank you for sharing your info.

    Sukiann, please try not to worry yourself too much.  I know that's easier said than done.  I was never much of a pill popper (usually didn't even take tylenol for headaches), but I've found that anti-anxiety meds really help me get through the rough times.  If you don't have a scrip for one yet (Xanax is my drug of choice), you might want to consider it.  Also, I'm sure you know this, but doing chemo will reduce your risk way down to the level of someone with a much lower oncotype score.  Pursue all the treatments available to you, and you will do well.

    Dx 1/12/09, IDC 2.6 cm, Stage 2a, Grade 1, 0/10 nodes, ER+/PR+/HER2-, MIB-1 15%, Onco 14, BRCA neg. Bilat mx w/TEs 2/3/09. CMFx6 3/2/09. Then tamox & bisphospenates. www.caringbridge.org/visit/stacybrownbraeske

  • NST40
    NST40 Member Posts: 6
    edited May 2009
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    samiam40, thank you for your reply.  My margins were all neg. however I had an excisional biopsy prior to my BLM right in front of my posterior wall so my posterior margin was only 2mm.  In my report it does not say were the posterior tumor was in the biopsy.  However, 2mm seems close to the chest wall.  I have found so much helpful info on this site.  I will let you know what I find out on Fri.

  • Seabee
    Seabee Member Posts: 38
    edited May 2009
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    Sukiann--I would say the micrimet is less significant than the oncotype score, and the fact that it's just a micro is good news as well.

    All of us here would be happier if we hadn't been diagnosed in the first place, but small blessings are better than none. Now that chemo seems to be necessary, you can concentrate on getting informed about the various regimens.

  • Sukiann
    Sukiann Member Posts: 88
    edited May 2009
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    Thanks ladies, I feel better about it today.  I think it was just the shock of getting the news. You know when you have something in your head and it's not what you expected (yeah, like I'd never get cancer and here we all are!).  There's nothing I can do about it but carry on with the treatment and keep a positive outlook.  It just sucks when you have "bad" genes and I do.  It's also weird when you have so many medical problems like I do and people say "but, you look so good"!  ha, ha, ha!

     CW89134 - thanks for the explanation.  I gave the report to my husband to figure out. I have chemo brain and I can't think straight!

  • Merilee
    Merilee Member Posts: 734
    edited May 2009
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    My ONCO score was 18, I opted not to do chemo.

  • MBCR
    MBCR Member Posts: 51
    edited May 2009
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    KEW   Did you participate in the Tailorx study?

  • cw89134
    cw89134 Member Posts: 62
    edited May 2009
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    I finally got in to see my onc yesterday. It's a long story as to why I haven't seen him since I was first diagnosed in February but that's a whole other conversationSmile.

    Bottom line, the onc agreed with my breast surgeon about "no chemo" for me -- Oncotype score = 24. I'm very fortunate in that my receptors are strongly ER + and moderately PR+. Her2 is negative. I will be on Arimidex for five years (maybe more as studies are concluded and data is refined). He said we could have gone either way about chemo but that, in my case, he would recommend me not having chemo. I have a permanent neurological disability so that may have been factored into his decision although he didn't specifically talk about that at all. This was the second doc who said "no chemo" so I'm satisfied. Had the onc recommended chemo at my visit yesterday, I probably would have seen another onc to get a third opinion.

    One other thing I was thinking about was the age factor. I'm 62. I suspect that if I were 10-15 years younger, we would have had a "Let's think about chemo" conversation yesterday. Samiam40, I was wondering if it would be appropriate for posters on this thread to include their age (should they want to) and to include that data in the summary. I personally do think it's relevant and including it in members' summaries might help those who are still trying to make a decision.

    Just a thought. Thanks so much for maintaining this thread.

  • Jeanne44
    Jeanne44 Member Posts: 1
    edited May 2009
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    I just got my score today - it's 12.  I don't see my oncologist until Monday so don't know yet what she is going to recommend.  My preference would be no chemo.

  • samiam40
    samiam40 Member Posts: 93
    edited May 2009
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    Sorry for the delay in responding. I'm going through chemo right now and had a rough week of side effects. 

    cw89134, I agree that age is extremely relevent in determining treatment decisions.  If people want to include their ages going forward, I'd be happy to include that information in the rollcall. 

    New posters have been added.  Take care all.

  • Sukiann
    Sukiann Member Posts: 88
    edited May 2009
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    Sorry to hear about the rough week samiam40. I hope next week is better for you.  Kiss

     Sukiann

  • lynninpa
    lynninpa Member Posts: 5
    edited May 2009
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    I like the idea of posting ages.  I am 50 and my doctors classified my health as "excellent" - oh, except for this cancer thing!  I had two doctors agree with no chemo with my score of 18 (11% recurrence) with a 100 ER+ (6% PR+, HER2-) tumor.  I looked at is as having 89% chance of no recurrence.  While research shows that chemo would improve my chances by 1-3%, there are no guarantees, and I was unwilling to risk potentially serious side effects for what I considered such a small statistical improvement.  Especially since, as everyone here knows, there are no guarantees and I could do chemo and STILL end up having a recurrence.  So I was very pleased that my doctors independently concluded that I need no chemo.

    p.s. to samiam40 - sending healing thoughts your way and hoping you feel better soon!  Kiss

  • Merilee
    Merilee Member Posts: 734
    edited May 2009
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    I am 49 had an Onco score of 19 and said no to chemo. I also focus on the % of not having a recurrence. Which is actually better than the 1 in 7 chance that is the norm for getting cancer in the first place
  • juliejfsrj
    juliejfsrj Member Posts: 9
    edited May 2009
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    I am 44 years old, and had an oncotype score of 32.  i did radiation, tamoxifen, and one year of herceptin.  I refused chemo.  Yesterday, my oncologist told me (after a ct scan) that his biggest concern is not my diet, exercise level, what treatments i did or did not do.  He said my age is the biggest risk factor, and none of the other things can truly change that.  I sometimes have fear because I didn't follow protocol, but I followed my instinct.  

    As a previous methotrexate taker for my arthritis, I said NO to having my immune system suppressed again. 

  • cw89134
    cw89134 Member Posts: 62
    edited May 2009
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    Samiam40,

    Hope you're feeling better.

    If you ever need some help maintaining this thread, I'd be more than happy to help. I'm a retired computer programmer (hence a bit of time on my hands) and a fairly savvy computer user. Just let me know.

  • NST40
    NST40 Member Posts: 6
    edited May 2009
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    Just thought I would let you know that my Oncologist said no chemo.  What a relief.  She does not think radiation will be necessary however that is not her specialty so I will see a radiation onco next week.  If no radiation I will go straight to Tamoxifen.  Did any of you have the Tamoxifen metabolism test.  I am an intermediate metabolizer which means I do metabolise Tamoxifen but not as well as some others.  If anyone has had this test I was wondering if it affects how bad your se are.  Thanks

  • jeanbean
    jeanbean Member Posts: 4
    edited May 2009
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    NST40--Congrats on NO CHEMO!! Good luck when you see the rad onc!

  • KEW
    KEW Member Posts: 450
    edited May 2009
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    MBCR--

    No I did not, it wasn't even offered to me, my onc is clearly comforatable that 15 is low score and doesn't place me in the gray zone.  TailorRX placed me in the gray zone.  I just had my hyster/ooph/exchange on Monday so I'm healing today.  I feel very good about the choices I've made, but it is so personal.  To me having my ovaries out was a better choice than chemo, it seemed wrong to me to attack my immune system, so I work to build it up. Since I was 100% ER/PR+ having my ovaries out seemed the right thing to do. With that said, had I had a higher score above 18 or 19, I would have chosen chemo in a heartbeat.  I also feel comfortable with my score of 15, sure I wish it were a 5, but I will live with a 15.

    Tumor Twin/Samiam--I hope you are feeling better.  Hang in there!

    Hugs,

    Karen

  • NST40
    NST40 Member Posts: 6
    edited May 2009
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    Just thought I would let you know that my radiologist said No Radiation is needed.  I am so thankful.  I will start my Tamoxifen in a few days and hope for minimal side effects. 

     Thanks for all your support

  • jeanbean
    jeanbean Member Posts: 4
    edited May 2009
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    My score is 13, 8% so NO CHEMO!!!!!!! I feel very lucky (I never thought 13 would be my lucky number!)  I'll start tamoxifen soon and like NST40, hope for minimal side effects. BTW, I'm 47.

  • aprilgirl1
    aprilgirl1 Member Posts: 773
    edited May 2009
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    Jeanbean and KEW - congrats on your low scores!!!!!  You will be all thru treatment before you know it! 

  • JanMarch
    JanMarch Member Posts: 18
    edited May 2009
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    My score is 8, 6%.  My treatment has been BLM, recon, SNB, TMXF.

    I'm 42, and my oncologist never mentioned anything about my age being a factor in whether or not I should do chemo - he said low score, no chemo!  Does anyone know if age is taken into account in the Oncotype score?  Am happy to NOT do chemo, but just curious.

  • fortunate1
    fortunate1 Member Posts: 467
    edited May 2009
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    Onco score 21, Rt mast, R, SNB, HYST (years earlier), FM

    I'm 61, my age definitely played into Onc's saying no need for chemo.  Also take Methotrexate for Rheumatoid arthritis, have had almost no side effects from FM so far. I'm worried about my bones though. Better start exercising more! 

  • aprilgirl1
    aprilgirl1 Member Posts: 773
    edited May 2009
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    Jan March - age can play a part in the Onc's overall chemo opinion.  For instance, I was 44 when diagnosed.  My oncotype score was 23 which put me in the mid to high intermediate group.  My onc.said if I were over 60 she would feel differently about chemo, but as I was 44 and premenopause, she recommended chemo.

    With a score of 8 at your age I would trust your onc.

  • moodyk13
    moodyk13 Member Posts: 8
    edited May 2009
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    Samiam, I just popped over again to see how things were going and boy is it disheartening to see this list continue to grow.  Cry  I pray for the day there is no newbies......ever again.......

    Until then, thanks for continuing in such a dedicated way!

    With all that said, I was 41 when dx'd. 

  • seagan
    seagan Member Posts: 32
    edited May 2009
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    Hi, all.  I'm 42, premenopausal, with an Oncotype score of 17.  Two well-regarded oncologists said they were comfortable with my not doing chemo at that score, despite my age and BC-heavy family history (though BRCA 1/2-neg). So I've opted not to do it.

    I'm in the midst of radiation now and will then do Tamoxifen + Zometa -- the latter was a big factor in the no-chemo route, too.  Zometa, at least based on the new, initial studies, appears to offer the same reduction in recurrence risk for me -- about 3% -- as the chemo, though both oncologists also noted that more data/studies are needed on the Zometa/bisphosphonates front.  Still, in my case, they both recommended it.  The trick now will be insurance coverage; we're hoping it's approved by the FDA for this type of use by the time I need it later this summer.

    Thanks to everyone, and esp. Samiam, for sharing all this great info and experience.  I can't tell you how helpful it's been to me, and continues to be!