Is Oncotype test always ordered? Are there are genetic tests I could request in addition?

janehicks
janehicks Member Posts: 50

Had a lumpectomy 10 days ago and SBN. Stage 1, grade 1, no lymph no involvement 90/98 EST/PR.

My surgeon has made no mention of the Oncotype score and when I called the lab for my biopsy results, they said I would need to ask my surgeon to submit for genetic tests. Is this normally how it's done?

Also, are there any additional genetic tests I could request that would show my odds of reoccurance? (Breast Cancer Index test?) I have degenerative disc disease and dread AI.

I'm assuming 90/98 EST/PR means my occurance could be high without AI?

Thank you kindly for taking the time to respond! Such a helpful group.

Comments

  • maggie15
    maggie15 Member Posts: 1,438
    edited May 2023

    janehicks, Tumors have to have certain characteristics before insurance will pay for genomic tests including the Oncotype dx which guides decisions about chemotherapy as well as providing a nine year recurrence probability. My insurance required that the tumor be .6 cm to 1 cm grade 2/3 or greater than 1 cm - 5 cm any grade as well as ER+, Her2- and limited if any node involvement. Since your tumor was grade 1 it would have to be larger than 1 cm to qualify under these criteria. If tumors with clear nodes don't fit this profile chemo is never recommended so these tests are not needed. You can contact your doctor if you have questions about your eligibility.

    High ER/PR alone does not predict recurrence risk. It means that AIs will probably be quite effective. There is an online tool called "Predict" that can give you a statistical estimation of recurrence rather than one that is based on your tumor biology.

    https://breast.predict.nhs.uk/tool

    The decision whether or not to take AIs is one that you need to make with the help of your doctors. Sometimes the possible effects on your other medical conditions may not be worth the benefit if it is small. My advice is to consult the physicians who treat the other conditions as well as your oncologist so that you have as much information as possible to guide you. Good luck with your decision.

  • salamandra
    salamandra Member Posts: 751

    When I went for my first follow-up appointment after surgery was when my doctor discussed oncotype with me and officially sent my tumor for testing.

    Your doctor may be planning to do that, or they may have good reasons to not want to order oncotype testing. Or they may theoretically have not good reasons. Either way, you should absolutely feel free and empowered to ask about it.

    Oncotype technically predicts the helpfulness of chemo. There isn't currently a test that predicts the helpfulness of hormonal treatment for a particular tumor. All we know is that it seems to overall cut metastatic recurrence rates by about 30%. But that might mean that a minority of women are getting a huge benefit while many women are getting little to none.

    The breast cancer index test is validated for use after I believe 5 years of hormonal treatment to give a prediction of how helpful additional treatment would be.

    Your oncologist can collaborate with your neurologist and/or someone in their own network with some speciality understanding to give you the best possible recommendations on hormonal treatment. AI is the most common first line of treatment for post menopausal women but it is not the only one.

    Not knowing whether hormonal treatment will be personally helpful for me made things much trickier when I have having pretty bad side effects with the first med I tried (tamoxifen). How do you calculate a known reduction in quality of life versus a possible improvement in life expectancy? Thank goodness, the second one I tried has been so much better. Now I think it's worth it for me to stay on it if there's even a chance it's doing any good.

  • janehicks
    janehicks Member Posts: 50

    Thank you both for taking the time to answer and provide clarity.

    I wasn't aware of the criteria for insurance to cover so that helps a lot.

    Will definitely bring this up at my first post surgery appt to see if there is any reason to pursue the test. I think my concern is the high end Pro/Est numbers so will ask if that's even relevant to the Oncotype score.