Oncotype Dx Test Anyone?

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  • Lojo
    Lojo Member Posts: 303
    edited February 2014

    Casper, it's a tough call. Before I got my results I'd decided anything over 18 and I'd do chemo. I'm young(ish) and have young kids and lost my mom to BC, so the marginal gain seemed worth it. My calculations might have been different if I were 60. For full disclosure, I didn't have to make the decision as my score was low, so my post might ring hollow, but I'm pretty sure I would have had chemo in that mid range. Get a second opinion from another oncologist.

  • BigDBeatingBigC
    BigDBeatingBigC Member Posts: 292
    edited February 2014

    I am sure it was very tough, Red.  I am still waiting for the results of my onco.  I will have them on Feb. 18, along with results of the Bracha and bone scan.  It has been a very very long couple of months from when I was first diagnosed.  But finally, on the 18th I will know exactly what I am facing.  Not sure what my choice will be if I am in the grey area, just have to wait and face that decision when I come to it.  Always a day at a time with a prayer to my God.

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited February 2014

    It is not just the Oncotype score that needs to be considered but many factors as has been mentioned.  It is especially important to look at the graph on page 2 that shows the difference in outcomes with and without chemo.  It's where the lines begin to split that chemo should be considered.  I lowered my bar and decided that anything over 12 should be considered for chemo.  When my score came back 24, I received several opinions and all were a resounding YES.  

    I'm another one with scores all over the place and it certainly drives me crazy as I'd prefer things to be clear.  Everything about my tumor points to Luminal A except my ki67 at 40%.  My ER went from 90% for pathology report to ER - with the Oncotype.  However, the research on hormone treatments uses the same method of testing as my pathology lab used.  In other words, I will have benefit from hormone treatment.  My ki67 makes me crazy.  My mitotic scores are a consistent 1.  Everyone I've spoken to has dismissed it and yet it appears everywhere in the literature.  

  • juneping
    juneping Member Posts: 1,594
    edited February 2014

    casper - 

    Ki67 is the proliferation rate, how fast the cells grow or divided.

  • Daylekbraca2
    Daylekbraca2 Member Posts: 22
    edited February 2014

    Hi ladies

    I just got my oncotype score  (19)

    I would get a 3 percent reduction from chemo plus hormone therapy vs hormone therapy alone 

    I am right on the borderline of intermediate risk. 

    Anyone out there with a score of 18 or 17 who can tell me your percent benefit. 

    Is is my second time at the rodeo l and really hope to avoid the cumulative effects of a second round of chemo (last in 2005) but I am not ruling it out yet

    Thanks

  • BigDBeatingBigC
    BigDBeatingBigC Member Posts: 292
    edited February 2014

    Wish I could advise you, Daylek.  I am still waiting for my results, I get them on the 18th.  Landing in the middle is hard, but you are right on that border.  I would be doing what you are doing.  Did your MO give you any advice or did he or she just say it is up to you?  Which of course, it is up to you, I am just curious as to if advice was offered from your doctor.

  • CaliKiwi
    CaliKiwi Member Posts: 98
    edited February 2014

    Waiting for the oncotype is driving me insane.  My Oncologist ordered the test on January 21st but the hospital didn't send through my slides till February 6th, 2 days after I was scheduled to meet with my onc to get the results!  I called them today and they gave an ETA of Feb 20th.  So a whole month waiting for these. I really just want to get  a move on with either the chemo or go straight to rads.

  • BigDBeatingBigC
    BigDBeatingBigC Member Posts: 292
    edited February 2014

    I am right there with you, Kiwi!  I don't think I will ever forget how terribly long these last couple of months have been.  No matter how horrible the news could be, at least I would know!  Never realized how difficult this would be.  Thank God there is this place.  If I were going through this 20 years ago, with no internet, well, let's just say happy we have each other in here.  I am praying you get good results, Kiwi. 

  • edwards750
    edwards750 Member Posts: 3,761
    edited February 2014

    Boy can I relate to the waiting game for the Oncotype score. That was pure torture. Mine came back in 10 days. I am blessed my score was 11 and my tumor was determined to be non-aggressive. With 33RADS and currently on Tamoxifen I have an 8% chance of a recurrence. Praying you guys get your results soon. As for an intermediate score - if I realized a 2% benefit from chemo I wouldn't do it. If it got into double digits - another story. Diane

  • Daylekbraca2
    Daylekbraca2 Member Posts: 22
    edited February 2014

    My surgeon from NOLA said probably not chemo. My oncologist in Vermont is meeting with me on Friday. 

  • CaliKiwi
    CaliKiwi Member Posts: 98
    edited February 2014

    Thanks BigDBeatingBigC - we have the same diagnosis and surgery date. What a coincidence!

  • StrongerThanAll
    StrongerThanAll Member Posts: 2
    edited February 2014

    I wanted to share my Oncotype results with you b/c our cancer was very similar.  In my right breast I had 2 small tumors that were 6mm and 7mm (just under 1cm), node negative, stage 1b, grade 2 and 3 and DCIS in the lower half of my breast, ER/PR positive HER2 neg.   My scores came back as 14 for the 6mm and 15 for the 7mm one.  I will be on Tamoxifen for 5+ years and am investigating ovary removal after children.  I am 37.  I would venture to guess that your Oncotype may come back similar.  I had a double nipple sparing  mastectomy with recon, so little to no worry about local recurrence.  I didn't want to worry forever about recurrence, monitoring, biopsies, etc.  I am young and 2 months before me my 32 year old sister had a mastectomy for DCIS in both breasts, so mastectomy was a no brainer for me.  Peace of mind was a big thing for me and I never want to hear that news again or have to put my family through it.  Also my family has no history of it and gene testing was negative.  Just for your info, insurance has to cover the mastectomy AND the reconstruction.  Best of luck to you!! Happy

  • Daylekbraca2
    Daylekbraca2 Member Posts: 22
    edited February 2014

    I met with my oncologist today who advised against chemo. He looked at my oncotype score as well as another calculation from adjuvant online. In my case both rates of reoccurance were close.  He said I would get 20% rate reduction of distant mets with chemo plus arimidex vs arimidex alone. This would be less than 3% by both calculations. Now onto stage 2 DIEP scheduling in NOLA.

    Thanks for the support. DK

  • LaVieEnRose
    LaVieEnRose Member Posts: 17
    edited February 2014

    Hi everyone, I'm new here, and I'll need to look back through this thread to catch up.  I'm waiting for my Oncotype DX results... I should have had them already, and when I started calling the oncologist's office for results 14 days after my bilateral mastectomy, I found out that she forgot to order it  :(  So now the pathology sample has to be sent to another state, and then results will come after that.  

    In the meantime, I've had 2 doctors tell me that even though my lymph nodes were clear, I'm firmly a stage I, and they feel no need to do any scans because they feel very confident that there's been no spread of the cancer, that they'd probably still recommend chemo regardless of my Oncotype score.  Their words were "everyone is going to want to give you the adriamycin because you're only 30 and your heart can handle the damage that the adriamycin causes."  My mom had adriamycin and I saw the heart damage that it caused on her and how it affected her, so I find my doctors' sentiment extremely frustrating.  Giving me chemo because I'm young and can handle it seems like they're treating me like an experiment rather than evidence-based practice.  

    Sorry, I think I just needed a place to vent where others know what I'm talking about.  

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited February 2014

    Hello LaVie, 

    It is awful waiting, but you are smart to wait for the oncotype results before you make your chemo decision.   I had to wait extra long too because the lab didn't send enough cancer with the first tissue sample. 

    If you need chemo, there are others that are less risk for the heart.  Perhaps a second opinion will help you when the time comes. 

    Good luck, MsP

  • Lojo
    Lojo Member Posts: 303
    edited February 2014

    LaVie,

    Waiting stinks. My surgeon said the MO would order the test, then something got held up in pathology, and long story short, it was 8 weeks after surgery that the results came back. Fortunately mine was low, but while waiting I was also panicked about adriamycin because my mom died of congestive heart failure during treatment for BC. I think your docs are saying probably chemo because 1) the pathology is grade 3, and 2) your age. My MO listened to my concern and said that if I did need chemo he would do TC only. If you do need chemo, ask about alternatives to A, and get a second opinion if your doc doesn't hear your concerns. Good luck :)

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited February 2014

    LaVie - You've told your MO about your mother?  I would think that is very important to consider when making decisions.  BTW - My score took a month to get back too.

  • LaVieEnRose
    LaVieEnRose Member Posts: 17
    edited February 2014

    Thank you all for weighing in with your perspectives.  It really helps to have calmer minds give input when I'm feeling frazzled.  I definitely think I'll seek more opinions when the official number comes in, and I'm glad to hear they're allowing more options with chemo, so maybe with some research I can discuss something other than adriamycin (if it comes to that).

    The thing is, I see a lot of people on here (and obviously my oncologist feels the same) feel that the younger you are, the more benefit there is to doing chemo early as I have many years ahead of me to live.  After my mother's experience, it has me coming from the opposite end of the spectrum.  She had her lifetime maximum of adriamycin and taxol when she received it back in 1999.  Thankfully she's still alive and has had no more cancer scares yet, but that was her 3rd time fighting breast cancer.  She maxed out on her lifetime maximum of radiation with her first 2 bouts of breast cancer so she couldn't receive it the 3rd time.  I really want those options to be there for me if I have to fight cancer again later in life and I worry about maxing out early on.  My mother is still fairly young - she has plenty of years left in her, but if God forbid she got cancer again, her options would be much more limited.  

    It's a lot to take in and I think my mind is still overwhelmed by it all.  I appreciate all perspectives and information, though, and am definitely trying to sift through it.  This experience certainly makes you feel like you have to obtain the knowledge of an oncologist overnight!

  • LaVieEnRose
    LaVieEnRose Member Posts: 17
    edited February 2014

    And what in the world is with all of the delayed results on things?!  I'm so sorry to hear that so many of you have dealt with delays and miscommunications, as well.  That's the last thing any of us need when going through such a stressful time.

  • CaliKiwi
    CaliKiwi Member Posts: 98
    edited February 2014

    Tomorrow will be one month since the oncotype test was ordered for me. Hold ups with the pathology lab not sending my slides, then when I called yesterday they said that it was still in the lab as it had to be retested. The hope is that the result will be through on Friday, but that is not guaranteed.  This waiting really does stink! :)  

  • Worriedmommyof2
    Worriedmommyof2 Member Posts: 3
    edited February 2014

    LaVie,

    I felt like I needed to respond to your post because our stats and ages are similar. I'm 32, diagnosed at 31, and my oncologist feels very strongly about the oncotype test.  My score came back Iow, and she said no chemo.  I think knowing your score will be helpful in making your decisions. However, I'm still having a difficult time accepting the fact that this even happened to me. 

  • LaVieEnRose
    LaVieEnRose Member Posts: 17
    edited February 2014

    Oh my gosh, worried mom, so sorry to hear you're going through this  :(  Yes, it almost feels surreal.  I suppose it would feel that way at any age, but, well, I don't know how to describe it.  I know what you mean about coming to terms with acceptance.  Since I'm still very, very early in my reconstruction, I walk around with scarves layered upon my chest and I still tend to walk hunched over to cover up my lack of breasts.  It's like I can feel all of the glances in my direction, and whenever I meet up with someone who knows what's going on with me, every time they look me over I get a weird feeling.  

    Kiwilady, that's ridiculous!  I can only imagine how awful all this waiting has been.  I can only hope that you'll get good results to compensate for this agony.

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited February 2014

    There is another test called the mamma-print should you come back in the intermediate range of the onco test. I didn't take that one bc I didn't want to wait any longer. My onco was 21 and I chose to do chemo.

    As someone else said, your age, overall health, grade, stage, etc will be considered. Ultimately it is up to you.  And, you can always opt for a second opinion if you are unsure. Hard decisions. Good luck! Waiting is hard. I think my onco was in, in about 2-3 wks.

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited February 2014

    For anyone who is on the fence about chemo, I'll share my experience.  I was petrified of chemo and freaking out when I started this thread.  However, now that I'm half way through the chemo and finding that it is not as terrible, horrible, awful as I feared, I am very glad I'm doing it.  It will be over in a month and I will have reduced my recurrence risk.  Had I chosen not to do chemo, I expect I'd be filled with anxiety over my decision.  

    Wishing everyone the best outcomes possible!

  • LaVieEnRose
    LaVieEnRose Member Posts: 17
    edited February 2014

    Warrior woman, that's the most important thing, that you can rest easy at night.  We can't allow cancer or it's tests to take away our quality of life because that gives it too much power that it doesn't deserve.  I'm glad to hear that you're happy with your decision and I'm really thankful you started this thread; the perspectives, knowledge and information on here are amazing and it's great to hear what's on the minds of so many others going through this same experience.  I know I'll continue to refer back to this thread as I wait for my results and once they do come in, because a lot of things can change when I finally hear what that magic number is.  I just want to thank everyone who has given input on here and wish everyone the best on their journeys!

  • CaliKiwi
    CaliKiwi Member Posts: 98
    edited February 2014

    Call from the Oncologists today, I have an appointment Monday morning to go and get my results. Yippee. Who'd have imagined I'd be so excited about that!

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited February 2014

    Hoping for a really low number for you, Kiwi!

  • BigDBeatingBigC
    BigDBeatingBigC Member Posts: 292
    edited February 2014

    Low, low, low!  Will be thinking of you on Monday, Kiwi.

  • CaliKiwi
    CaliKiwi Member Posts: 98
    edited February 2014

    Oncotype score came back at 22. So in that lovely grey area :) But! To chemo I will go!

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited February 2014

    KiwiLady,

        I was also in the gray zone so I know how it feels to have to make such a difficult decision.  I also did chemo and weirdly, once I got my test back and made my decision I felt better.  I made my decision on a Thursday, had chemo class on Friday, visited the dentist for a cleaning on Monday and had my first chemo treatment on Tuesday.  It helped that everything moved along quickly from that point.  Take good care, hon.  We are all rooting for you.

    Love, MsP

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