Oncotype DX questions!

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LindseyLadd
LindseyLadd Member Posts: 10
Oncotype DX questions!

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  • LindseyLadd
    LindseyLadd Member Posts: 10
    edited December 2013

    Anyone have Oncotype DX testing to help with deciding on chemo? I am waiting on my results, but my oncologist is guessing it will come back as intermediate risk. I know I'll have to do 6 weeks of radiation and what seems like my lifetime of tamoxifen, but the chemo question remains and I'm very torn about it. Anyone in the same boat? 

  • bevin
    bevin Member Posts: 1,902
    edited December 2013

    I had the Onco type. Was young for BC so they recommeneded chemo until the test came back with an 11. The I went for 3 opines, had one say do it as I was young, another say they felt I'd be okay without it, and a 3rd say not needed.

    I ended up not doing it.

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited December 2013

    Mine was intermediate at 21. I am post-menopausal. There is also another genomic test called the mammaprint. I did not take that one. I'm not sure how they compare to one another. I decided on chemo bc I am otherwise healthy and wanted to give myself the best chance possible. Good luck on your decision and results!

  • 1ToughCookie
    1ToughCookie Member Posts: 6
    edited January 2014

    Lindsey, I'm in a similar boat though I just received my oncotype score. I'm a 19, which is very low on the intermediate scale. Nothing like a gray area. My oncologist says she could go either way with chemo. Estimated risk of recurrence with my score is 12%. With chemo, my dr. thinks she could lower my risk by 2-4%. I am seeking a second opinion, but I doubt that doctor will give me much more clarity or peace of mind. I was diagnosed in November and had surgery in December. I presumed I would do rads and tamoxifen - until I received my score. I'm 39. Dr. was surprised I didn't score low, but attributes the score jump primarily to LVI. I'm leaning toward chemo given the LVI and my age. I hate the thought though and change my mind hourly.

  • Gully
    Gully Member Posts: 268
    edited January 2014

    Hi ToughCookie,

    It sucks getting a 19! I had that score as well, and had LVI too. My onc would have supported me either way. He left it up to me. I went to Dana Farber in Boston for a second opinion. I ended up doing chemo because of the LVI, I was 45 at dx. the TC is doable. If my cancer comes back, I cant say it was because I skipped the chemo. If I would have been neg for LVI, I probably would have gone with surgery and Tami. Good luck, its a hard decision. (((hugs)))

  • 1ToughCookie
    1ToughCookie Member Posts: 6
    edited January 2014

    Gully, thanks for that. IF I lived in Beantown, Dana Farber would be my home. They have a really strong Young Cancer program. I'm in DC area, which is also good. What prompted you to do a mastectomy?

  • Gully
    Gully Member Posts: 268
    edited January 2014

    Toughcookie: I chose to do BMX for a couple of reasons. First I had a lumpectomy back in my twenties on the right side that was benign so I had many mammos over then next 10 years to check on that area because I was so young. Mammos have always been really painful for me. I would get bruises down my side and on my sternum. This go round my cancer was dectected on the left.My BS ordered a MRI just in case because of my history. It came back neg on the right but I just had a gut feeling to have it removed as well and my BS agreed. Low and behold they found a second IDC in the right breast as well. So actually I had two oncotypes done. Left was 19 and right was a 5. Treatment is based on the worst tumor stats so I chose to do the chemo. I did not have to do rads though due to the BMX.

  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited January 2014

    Mine was 17 with small positive node and extensive LVI. I got my second opinion at Dana Farber as we'll. ... Great place. They said no chemo. I had a 2/2 split at Mass General. I was 58 so different. It is the worst decision but whatever one you make ...it is the right one for you. 

  • LindseyLadd
    LindseyLadd Member Posts: 10
    edited January 2014

    hi ladies,

    Thanks for your input. I have an update. I just heard that my oncotype result was 17. The doctor says this translates in to an 11% recurrence rate as long as I take tamoxifen for 5 years. Adding chemo could decrease my chances of recurrence further by 3-5%. I meet with my oncologist tomorrow to discuss my treatment options. I'm so unsure about chemo being worth it, any advice or info regarding your experience is welcome. 

    Thank you so much for the support. 

  • Nan54
    Nan54 Member Posts: 93
    edited January 2014

    Hi Lindsey,

    I am 37 and had an oncotype dx score of 13. My tumor was 1.5cm, grade 1-2, node neg, no lvi, highly er and pr positive, her2 negative.  I got 3 different opinions at 3 top cancer centers - all advised against chemo. All thought that the benefit of chemo would be minimal compared to the potential risks. I am doing zoladex injections monthly to suppress my ovaries and taking tamoxifen for 10 years. There is an entire thread in the stage 1 forum dedicated to this type of treatment - called something like "stage 1, grade 1 and premenopausal." It might be worth checking out to see what options may be available for you for the discussion with your doc. I really struggled with the no chemo decision and do second guess and worry all the time, but also feel blessed to have had a choice (to some degree). Good luck to you with this decision and your treatment! Hugs.

  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited January 2014

    Lindsey,

    I struggled with the chemo decision as well. At a 17 oncotype I was getting a 1-2 percent benefit according to my MO, not the 3-5 percent that you are getting. For me, it was the strong conviction of the Dana Farber Dr. That I wouldn't benefit from chemo at all ,even with my positive node. Every one else's opinion was so wishy washy. I am super diligent with nutrition, exercise and see a naturopathic MD as well. So trying to give myself an edge. I am on month 8 of tamoxifen. No major problems.

    I still live knowing I had a somewhat aggressive cancer but am at peace with the no chemo decision.

    Everyone is different. Good luck with your decision. You will make the right one.

  • Sistercoyote2
    Sistercoyote2 Member Posts: 38
    edited January 2014

    I am basically in the same boat...score of 19 and can't decide whether to do chemo or not.  I am not excited about the chemo and really don't want to go that route.  I too change my mind hourly.  My surgery was December 17, no lymph node involvement and I want to get the process started, whatever route I am taking.  This decision is very difficult and emotional.  I cry at the drop of a hat. 

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

    Lindsey and Sister...I feel your pain wrestling with what to do. It is a tough decision. Some people will tell you throw everything at the BC no matter what and others will say the benefit vs the SEs of chemo is not worth it. Only you can decide which is best for you. There are no right or wrong answers because I am sure doctors could make an argument for going either way. I had the Oncotype test and my score was 11. I had Stage 2, Grade 1 IDC with a micromet in the SN. The grade level is low and I think that is a factor in deciding what to do as well. I have a friend who had BC that was non-invasive but the grade level of the tumor was 3 so doctors were very aggressive in treatment. What you don't want to do is make a decision and second guess yourself or look back and wish you had....It is a very difficult and emotional decision no question about it and its okay sister that you cry at the drop of a hat. We all have and still do. It is a very emotional time. Whatever decision you guys make make it your own after all it is your body and your life. Keep the faith and keep us posted. diane

  • LindseyLadd
    LindseyLadd Member Posts: 10
    edited January 2014

    Just an update... After speaking with my MO, I've decided to avoid chemo.  My tumor was ER+/PR+ and oncotype was fairly low, so she feels that chemo wouldn't benefit me all that much in comparison to tamoxifen and radiation. So, I start radiation February 24, the day after I return from my honeymoon. I'm just thankful the doctors are being flexible and letting me wait until after my wedding for treatment! 

  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited January 2014

    Lindsay,

    Good for you! You have made your decision. Go have a wonderful wedding and honeymoon. Try not to think about BC and enjoy your moment!!!

  • LindseyLadd
    LindseyLadd Member Posts: 10
    edited March 2014

    image

    Hi ladies, I just wanted to share one of my favorite pictures from our wedding. It was a magical day! 

    I'm 2 weeks in to rads and so far so good :) 

  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited March 2014

    BEAUTIFUL!!!!!!  Congratulations!

    Good luck with rads. I did 6 weeks and the another week of boosts. It wasn't that bad. Eat healthy, keep moving but rest when you need to.

  • bevin
    bevin Member Posts: 1,902
    edited March 2014

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