"Low" Intermediate Oncotype Score

Euryale
Euryale Member Posts: 4
edited October 2017 in Stage I Breast Cancer

Hi everyone! I'm 48 years old and had a lumpectomy for a 2cm IDC on 9/12/17. Surgery went well. Clean margins, clinically node negative.

Met with my MO and RO, both from MSK, this week for the first time. My Oncotype score was a 19, so the "low" intermediate range. The MO said the benefit of chemo would lower my distant reoccurence percentage by less than 2% (10.5% as opposed to 12% w/just tamoxifen.) The MO was very informative, but basically left it up to me how to proceed in regards to chemo. I brought up a concern I had re: the "extensive" LVI noted on my pathology, but both the MO and the RO did not seem overly concerned by it.

My initial thought was why go through chemo for such little benefit? However, now with my radiation simulation scheduled for this upcoming week, I'm stressing out that I'm making a mistake. Any guidance would be appreciated! Thank you!

Comments

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited October 2017

    Euryale, Do you have a family history? Did you get a BRCA test done? Any other health issues? You could always get a second opinion. There are a couple of websites that give you a percentage risk based on the tumor pathology and treatment. Cancer-math and Predict come to mind. Maybe someone else will post about them also. You may also want to ask about getting the Mamma-print test done. Similar to the onco-test, but tests more genes and will give you a high or low recurrence risk. I didn't have one and had a 21 onco-score. We are all different, but chemo wasn't too bad for me. It wasn't a walk in the park, but very manageable with few SE's. There is a "window" of time, that is best to do chemo, if you are going to. I believe it is within 12 weeks of surgery...? Could be wrong. A question for your MO. Best wishes.

  • Euryale
    Euryale Member Posts: 4
    edited October 2017

    Thank you keepthefaith! I appreciate your guidance. I will check out the tools you mentioned and give my MO a call on Monday about having the Mammaprint test done. I'm in very good health; just have a mild mitral valve prolapse. I did have the BRCA test done and it was negative. Also, my maternal grandmother did have BC, but she was diagnosed at 84 years old, so they said that doesn't factor in. I know there are no guarantees, no matter what treatment we choose. I was really hoping the Oncotype DX would provide clarity and it's only made me more confused! Thank you again :)

  • pretzelwoman
    pretzelwoman Member Posts: 3
    edited October 2017

    I had an Oncotype score of 19....I do understand your concerns....after meeting with my medical team (SO,MO,RO plus my Internist) and reading the materials presented to me at that time 9/2013.....my decision was not to have chemo...no one on my medical team recommended chemo but would support my decision if I decided to undergo treatment. I do not have any regrets and celebrated being a " Four year Cancer Conqueror" on 9/26/2017....I believe I had the best Medical team in Michigan and I thank God everyday for their guidance. Everyone is different and it is a very difficult decision and I wish you the best.....

  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited October 2017

    Hi Euryale! It's good to have a "systemic" treatment along with surgery and radiation. Chemo is a systemic treatment. But so is endocrine therapy - SERMs like Tamoxifen and Aromatase Inhibitors like Femara. They're very good at starving out stray cells, and from what I've read they give even better odds than chemo.

  • Euryale
    Euryale Member Posts: 4
    edited October 2017

    Thank you pretzelwoman. It's great to hear from a fellow 19 Oncotype, but most of all to hear you are four years out and doing well! Congrats! I look forward to that day!

    Also, thank you Lucknumber47 for your response. You actually jogged my memory a bit. I believe my MO said that her plan was to put me on Tamoxifen for two years, chemically induce menopause and then I would go on an AI from there.

    There was so much info given during the appointment and the 19 score made my head spin. I will call my doctor on Monday just to review everything. Thank you all again; you have all been wonderfully supportive!


  • Belinda977
    Belinda977 Member Posts: 381
    edited October 2017

    I was the same score, 19. I was a little freaked out by that. I am 99% ER/PR positive so it was explained that tamoxifen was more important than chemo. My cancer was slow growing (not good for chemo). I had a partial mastectomy, radiation and tamoxifen. My oncologist was not willing to give me chemo because of the side affects. I am 5 years out.

  • windingshores
    windingshores Member Posts: 704
    edited October 2017

    I have read that LVI is equal to having one positive node. It didn't specify focal or extensive. I understand your concerns and had the same experience with MD's being dismissive of concerns about LVI- until I found the right doctor who listened!

    I got three opinions, until I felt really good about my decision. I did not have chemo despite grade 3 and LVI but my Oncotype was low. The discordance bothered me. I also had some uncertainty about Her2 with contradictory results. The third doctor who listened, retested my Oncotype and my Her2.  I did not do radiation, had BMX and doing Femara.

    I honestly forget the window of time for deciding on chemo, once surgery is done....but don't want to add stress if you don't have much left. Still, talking to a second doctor who is more forthcoming about the LVI might be very reassuring. Genomic Health customer service can be really informative and they welcome calls too. You could ask them how LVI might affect interpretation of risk.


  • Euryale
    Euryale Member Posts: 4
    edited October 2017

    Thank you Belinda977! I am happy to hear you are five years out and doing well! I spoke with my MO further and she advised me to proceed with radiation and said we can revisit the possibility of chemotherapy after. I didn't even realize chemo after radiation was a possibility. I'm 95% ER/PR+ and she also said radiation and tamoxifen would be more effective in my case.

    Thank you also, windingshores! I am taking advantage of these few extra weeks I have to make a final decision on chemo. I've just contacted another MO and he is looking over my pathology. I'm curious to hear what he thinks. Thanks also for the tip regarding Genomic Health, I will certainly give them a call to find out what role, if any, LVI plays in my recurrence risk.

    I truly appreciate the guidance!

  • KBeee
    KBeee Member Posts: 5,109
    edited October 2017

    you could also ask for the mammaprint which has no intermediate score. None Of these tests consider LVI.


  • Belinda977
    Belinda977 Member Posts: 381
    edited October 2017

    What a coincidence. I just received a call from my breast surgeon's office to see if I wanted to participate in a research project. There is a company developing a tool to help make better/more informed treatment decisions for those of us in the intermediate range. Of course I agreed to donate a sample of the tissue they saved and my medical records. I am trying to find out the company or study name so I can keep tabs on this!

  • Blair2
    Blair2 Member Posts: 495
    edited October 2017

    Euryale - I have the exact DX as you, but I had 5 nodes checked in my surgery. I'm presently waiting for my Oncotype DX results and quite nervous about it. Should know something in a week or or so. I decided that if it scores in that 19-30 intermediate area, that I would have the MammaPrint test done. I read that about 50% of those in the gray area, end up low risk with the Mammoprint test. One big reason I'm afraid of chemo is that I have heart disease and had a bypass 3 years ago. It's bad enough having to face radiation treatments. My surgery was recent, so still healing. That 19 is so borderline, but since you are much younger, you might want to consider the Mammoprint just to have peace of mind. If you do decide on chemo and I end up with a Oncotype score like yours, I'm going to follow you along. Best of luck to you

  • edwards750
    edwards750 Member Posts: 3,761
    edited October 2017

    I had a low Oncotype score too - 11. I had a micromet in my SN. My BS said it would get me chemo. Wasn’t his call. My MO ordered the Oncotype test thankfully. I dodged chemo because of my score. I have an 8% chance of a recurrence. I’m 6 years out last August. Had 33 Radation treatments and 5 years on Tamoxifen.

    We have to consider quality of life and percentages. I promise you I would not have done chemo for a 2% reduction.

    We have to be our own advocates. We do our homework and decide what’s best for us. After all it’s our lives.

    Diane

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