Age 40, ER+/PR+/HER2-. OncoType 20. Chemo???

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ailuj9
ailuj9 Member Posts: 11
edited March 2021 in Young With Breast Cancer

I was diagnosed with invasive ductal carcinoma in January at age 40 (I turned 40 four days after diagnosis). Receptors: ER+/Progesterone+/HER2 negative. I underwent lumpectomy (tumor size 2cm) with sentinel lymph node biopsy, which was negative for cancer. I will have to do radiation. I tested negative for the BRCA1/2 gene and for other breast cancer genes. I do not have a strong family history of breast cancer. At this point, my Oncotype Dx score came back at 20. This puts me in a gray area for determining if I should proceed with chemo or not. According to the literature, if my score is 21 or higher, based on age, one should proceed with chemo. Since my score is 20, my oncologist is leaving it up to me and now I am tasked with making a very challenging decision. Chemo would be taxotere and cyclophosphamide once every 3 weeks for 4 rounds. Followed by the hormone blocker, Tamoxifen, regardless of whether I do chemo or not. Thus, I am reaching out to you for your knowledge and to those of you who have possibly had to make similar decisions. Thanks in advance

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  • moth
    moth Member Posts: 4,800
    edited March 2021

    Hi & welcome to the boards. I'm sorry you find yourself dealing with this diagnosis and such a difficult decision.

    I didn't have to make your decision as chemo was a given for me right from the start but I wanted to give you some things to mull over:

    As I understand the TailorX study results, for <50 year olds, if recurrence score was 0-15 there was no benefit to chemo; recurrence score 16-20 has ~1.6% benefit; 21-25 has ~6.5% benefit. (this is from the TailorX study which studies intermediate results. Reported out in 2019. You can see the under 50 yo subset analysis here https://www.oncotypeiq.com/en-US/announcements/TAI... towards the bottom hit a grey bar near right side which says "...may differ for younger patients =<50"


    soooooo. all this to say, at 20, there is some benefit, though whether it's 'worth' it is a good question.

    Several things I'd consider:

    -your race. Oncotype may be less accurate for black patients https://www.cancer.gov/news-events/cancer-currents...

    -how strongly ER+/PR+ was your tumor? If it's very strong, that's a better predictor of tamoxifen being an effective therapy

    -what Grade? Grade is a proxy for the speed of the tumor growth & to an extent, its aggressiveness. High grade tends to be more dangerous but also tends to respond better to chemo

    -how likely are you to put up with the possibly very unpleasant side effects of Tamoxifen? Only you know your tolerance for suddenly feeling like a creaky old lady, or loss of libido, or vaginal atrophy or mental fog etc etc etc. Which is not to scare you off hormone therapy but to be honest about the fact that while for many, it's a tolerable treatment with minor side effects, the reality is also that many women do NOT stay on these meds for the length of time recommended (5-10 years)

    -otoh - if you have some issues like neuropathy or just feeling aged by a decade after chemo which might not have been necessary, will you regret that or will you think it was worth it for the extra guarantee?

    -your personal risk personality & feelings of regret. Do you want to be able to say 'I did everything' or are you ok with saying 'I did what I thought was right & reasonable & I'm ok with how things play out'

    Whatever you decide, you want to get to a place of having no regrets, kwim?

    best wishes

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited March 2021

    I wanted to throw everything at it because if I hadn't, and I recurred, I was afraid of really regretting my decision. As it turned out, I really didn't have a choice because I'm triple positive. Good luck finding the right decision for you.

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2021
    Dear ailuj9 - We're so sorry for the circumstances that have brought you here, but you've come to the right place for support and information. Welcome!We know it's not easy, but hope we can help you make the most informed decision along with other members advice and your medical team. Here are some links to more information on Oncotype from our website:
      Research Confirms Women With Oncotype DX Recurrence Score of 11 or Lower Can Skip Chemotherapy
    Oncotype DX Recurrence Score Helps Predict Breast Cancer Survival

    We hope this helps, and we look forward to hearing more from you soon!

    The Mods

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  • kathabus
    kathabus Member Posts: 205
    edited March 2021

    I had a low oncotype....10. BUT...I was 43 with a Macrometastases in the sentinel lymph node. Usually that's automatic chemo.

    Ultimately our decision wound up being no chemo.....but ovary suppression (I opted for oopherectomy) and an aromatase inhibitor (versus the tamoxifen). I feel like with highly positive ER/PR......sometimes that's a good middle road between no chemo and chemo for young premenopausal patients. Might be a good conversation to have with your oncologist. Good luck to you!

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  • ailuj9
    ailuj9 Member Posts: 11
    edited March 2021

    Thank you for all the things to consider. Very helpful!

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  • ailuj9
    ailuj9 Member Posts: 11
    edited March 2021

    Thank you Moth, Cowgirl13 and Kathbus for all the things to consider and sharing your stories with me! Definately helps to get others opinions and lists of things to consider that I didn't know or hadn't thought of! Really apprecite it! Also, thank you all for the website info for my research!

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