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NEW Oncotype Dx Roll Call Thread

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Comments

  • kk69Z
    kk69Z Member Posts: 38
    edited August 2009

    mbcr: I am doing very well on the tamoxifen. Had hot flashes first couple months, but that was it. As far as the periods, I had a hysterectomy about 8 years ago. So sorry I can't help you with that.

  • jburke1
    jburke1 Member Posts: 258
    edited August 2009

    I am so glad I found this thread! I am currently waiting for my Oncotype test to be completed. I go back to my onc next Friday to get my score (which I will report to you :) ). I am very anxious about this appointment. Can anyone let me know of any questions I should be asking at this next visit?

    Thank You

    Jen

  • magob
    magob Member Posts: 242
    edited August 2009
    Hi All:  Age 46.  IDC, Stage 1 grade 1.  Micro mets in one of 7 nodes.  ER+ PR+ HER2-.  1.2 cm.  Oncotype score 20, 13% chance of recurrence. BRCA negative, although family history with cancer suggests some kind of mutation.  Lumpectomy and removal of lymph nodes.  T/C x 4.  Radiation and Tamoxifen to follow.  Will do zometa some time after that.  Fight HARD and God bless all of you!  XO, Mary
  • MaryNY
    MaryNY Member Posts: 486
    edited August 2009

    Hi MAGOB: you are node-positive and still had the oncotype test. Was this because you are post-menopausal or because of family history of cancer?

  • magob
    magob Member Posts: 242
    edited August 2009

    Hi Mary - Technically, "on paper," I was node negative.  I had microscopic traces in the first node.  The way they decide is by size - under a certain measurement they still consider it negative.  HOWEVER - new data suggsts that recurrence is still higher in women even with microscopic traces like mine.  We may see protocol change in the future to consider all micro mets as node positive.  That being said, go to the genomic health web site - the official site for the oncotype test.  I believe they do testing for some post-menopausal and/or node positive women. 

  • Pines
    Pines Member Posts: 38
    edited August 2009

    Sam, here is my info for inclusion: 

    39 years old, premenopausal, 1.7 cm, Onco DX Score 8 (6%), BLM, node negative, but lymphovascular invasion (LVI), TX x 4, will be taking tmxf after chemo, radiation yet to be decided as tumor was .1 cm from chest wall. 

  • weesa
    weesa Member Posts: 78
    edited August 2009

    Sam, even tho I had had chemo six years before, I have been so curious about my oncotype dx score that I recently had it tested with archived tissue. My onc warned me it would be high--but I just wanted to know. I am postmenopausal with extensive node mets (my sb had a large tumor wrapped around it) and a large primary tumor-- 5cm. I am er pr positive, her negative, grade 2,  stage 3a ductal. (Yes, they have recently started doing node-positive cases) and guess what? My score was an 18, and it is worth the expense--it has made me feel so much better. I did everything, mast, dd chemo, 6 years of AI's, radiation. Maybe it wasn't all necessary afterall. I think there is no way we can second guess OncoDx results--this is a unique test that goes beyond the parameters we have always had.

  • aug242007
    aug242007 Member Posts: 186
    edited August 2009

    weesa, I am so amazed that your doctor did the Oncotype for you.  YOU HAVE A FANTASTIC DOCTOR! Just think if the TAILORX study was completed on the past 10 years of breast cancer tumors instead of the next ten years of breast cancer tumors.  So many women could be spared chemo.  It just seems that we are so far behind on research.  GO WEESA!

    Melissa

  • carolehalston
    carolehalston Member Posts: 8,240
    edited August 2009

    I should be getting my oncotype test results this week.  I'm SO nervous.  I keep telling myself that lots of women survive chemo.  Please, please, please let it be a low number......

  • carolehalston
    carolehalston Member Posts: 8,240
    edited August 2009

    I just got the phone call from my dr.'s office.  My oncotype number is 9!  No chemo.  I'm 66 years old.  IDC.  Tumor 1.2 centimeters.  Grade 3.  ER+/PR+, HER2 neg.  BMX.  SNB. 

    That grade 3 really had me worried.

  • weesa
    weesa Member Posts: 78
    edited August 2009

    Melissa, Yes I do have a pretty great onc. He really believes in teaming up with his patients. When I first broached the subject of getting tested for OnctotypeDx he was taken aback and tried to tell me it was of no use now. I convinced him otherwise. (I was trying to make a decision about quitting AI's as well as always having the nagging feeling I just wanted to know.) I told him I was willing to pay for it, etc. He said, "Well, I can see you are really determined, let's do it." My onc totally skipped the Arrogance 101 course in medical school (Yale) and instead took that great elective, "Building Consensus with Your Patients." I have been very lucky with him--but of course I had to kiss some frogs along the way before I found him. Your idea about the Taylorx study is really intriguing.Do you suppose we have enough political clout to make better use of archived tissue?

  • DenverDiva
    DenverDiva Member Posts: 77
    edited August 2009

    carolehalston, that is great news for you!!!!!!!  Celebrate!  I am new to posting on this thread, but have been following it for awhile.  I am waiting for my oncotype score, and will post when I get the results.  I signed up for the TAILORx trail, and hope all works out well.  You are all amazing women, and I thank you for your wisdom.

    Hugs,

    Susan

  • Efflorescing
    Efflorescing Member Posts: 27
    edited August 2009

    Hi,

    Just received my score of 9. Age 48~IDC 1.5 cm ~ ER/PR+ ~ Her2Neg ~ LUMP~Meno after LUMP

    Alternative Therapy

    Carole 

  • carolehalston
    carolehalston Member Posts: 8,240
    edited August 2009

    Efflorescing, congratulations on the low score!  I'm happy for you.

  • magob
    magob Member Posts: 242
    edited August 2009
    HOORAY CAROLE!  I'm so happy for you!   This is THE BEST NEWS.  XO, Mary
  • Efflorescing
    Efflorescing Member Posts: 27
    edited August 2009

    I am very excited about the results! If it were not for the information posted on this site I would not have known about oncotype, had the guts to insist that my oncologist order it and I would be halfway through the chemo she said I absolutely needed to survive. According to her calculations I had a 25% chance of recurrence in 10 years. 

    Thank you!

    Carole

    Free Orkut and MySpace prayers Graphics Glitters

  • aug242007
    aug242007 Member Posts: 186
    edited August 2009

    Just a gentle reminder to everyone,

    Please sign up for the TAILORX study.  Be sure and ask your doctor.  There is no cost and we can help others in the future.  PM if you need information.

    Melissa

  • lmays
    lmays Member Posts: 23
    edited August 2009

    Efflorescing - sing is sista!  I had the same experience.  Ist oncologist wanted me in clinical trial for chemo (2 drugs vs. 3 drugs).  No mention of ONCOtype test.  If it weren't for this discussion board I might not have had the guts to walk out of there and get a second opion doc who offered ONCOtype to me without my asking.

    I thank God for what I have learned here and for having been led to this place.

  • hood1980
    hood1980 Member Posts: 168
    edited August 2009

    MBCR  Like you I was 49 when diagnosed and had regular periods, but the combination of chem + tamox sent me in to menopause.  My onc was hoping it would come back and had my hormone levels tested every 3 months for 9 months.  She wanted me to sign up for  a clinical trial on ovarian suppression but the chemo & tamox took care of all that.  I do have HOT flashes and a few more aches and pains than I used to, but overall I am back to "normal" after comleting chemo last Oct and starting tamox last Nov.  Feel free to PM if you have more questions.

    Take care ladies!

    Joyce

  • mawhinney
    mawhinney Member Posts: 14
    edited August 2009

    I would be interested in learning how many women chose not to do chemo based on a high OncotypeDx score. 

     My score was a surprising 31. Surprising because everything else had put me in the low group. My tumor was 8mm, Stage 1, no nodes involved, and I had a mastectomy. BS said I was very low risk. After much study & debate I decided not to do chemo. When we looked at the charts, chemo only gave me a 3% better change. The Onco charts group stage I and stage II folks together. I was Stage 1. Plus I was going to be taking Arimidex which I was told offered my case a slight improvement over Tamoxifen. Decided that in my situation the possible side effects of chemo overshadowed the benefits.  ONC said he was fine with my decision.

  • Seabee
    Seabee Member Posts: 38
    edited August 2009

    As others pointed out when I decided not to do chemo, the oncotype score is only one piece of evidence to consider. I agreed with them, because it was not the only evidence my decision was based on, and like any other assessment method it is not  (or should not be) relied on absolutely. In many cases it is the most precise way of assessing how a tumor is likely to behave, but that doesn't make it infallible. The oncotype website emphasizes that it should be considered with other indications when making treatment decisions.

  • DenverDiva
    DenverDiva Member Posts: 77
    edited August 2009

    I just recieved my oncotype score of 24.  I signed up for the TAILORx trial, and was randomized to Chemo and Tammox.  I feel okay about that since my score is close to the cut off any way, but a little sad that I have one more thing to face. Cry  I am 45 with Pleomorphic ILC,1.9cm,

     ER/PR+, HER2-.

  • magob
    magob Member Posts: 242
    edited August 2009

    OK Diva - We're right here with you.  And a tip of the hat to you for being in the trial - you are paving the way for our sisters in the future.  God bless you.  XO, Mary 

  • rdrake0
    rdrake0 Member Posts: 12
    edited August 2009

    17% = 25 score (rdrake0: Age=60, LMP x 2, SNB w/no pos nodes, RAD=33, A/I, Mets to liver, [Ixempra (new chemo) + Avastin] (clinical trial)

  • DenverDiva
    DenverDiva Member Posts: 77
    edited August 2009

    Thank you Mary, I am thankful for all of the women who have participated in trials in the past, so I feel good about doing my part too.

  • Luna5
    Luna5 Member Posts: 532
    edited August 2009

    OncotypeDX score 0.  It says 0% local recurrence and 3% distant recurrence.

    BLM, BL-SNB, HYSTY 

  • carolehalston
    carolehalston Member Posts: 8,240
    edited August 2009

    Wow, Luna5, a score 0!!  My 9 looks high in comparison.  Will you be taking an estrogen blocker?

  • HelenaJ
    HelenaJ Member Posts: 304
    edited August 2009

    Luna5 - how good is that - never heard of a 0 - must have felt like you won the lottery.  Fantastic.

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited August 2009

    Just PM'd my details (Onco 17 like the others listed same) Hey Luna that does rock!  So what was the TX decision at 0%?  Wonder if that means you now have LESS chance than a non-BC person to get BC!  Hope so :)

  • DenverDiva
    DenverDiva Member Posts: 77
    edited August 2009

    Good for you Luna5!  I hope you are able to relax and enjoy that awesome result!!!!

    Susan