DCIS Oncotype score

Options
key46
key46 Member Posts: 6

How many of you have had the DCIS Oncotype done? I was diagnosed with a 7mm DCIS in late March by a vacuum assisted core biopsy after the lesion was found on a mammogram. It was classified stage 0, grade 1. The lumpectomy didn't have any abnormal DCIS cells, apparently the core biopsy got it all. The Van Nuys prognostic put me in the lowest group for recurrence, and the Memorial Sloan Kettering DCIS Nomogram also showed a very low score. Radiation did not seem beneficial, but I did decide to take Raloxofene (Evista) because I had taken it a while several years ago for osteoporosis, had no side effects. When I heard that there is now an oncotype test for DCIS, I decided to do it, basically to confirm that not doing radiation was the right decision. I liked the idea that it was looking at the actual genes of my abnormal cells (they used the samples from the biopsy) and relying less on general statistics.

When the results came back, I was shocked to have a score of 61--High chance for recurrence. The MO was also shocked--I don't think he had much experience with the DCIS oncotype. Does anyone have any experience with the oncotype test, especially having such a big divergence between its score and all other prediction models? Anyway, am doing rads now, but still a little concerned about what that high score means.

Best to you all, and thanks for sharing your experience and expertise.

Comments

  • april485
    april485 Member Posts: 3,257
    edited June 2015

    Hi key46, No, have not done the oncotype test but now wondering if I should have after your post. I had a grade 2 DCIS that was small in size and I did have rads and take an aromatase inhibitor since I am highly ER/PR+  Was the test covered by insurance?

  • key46
    key46 Member Posts: 6
    edited June 2015

    HI

    My insurance covered the test. The oncotype company contacts the insurance company to make sure before doing the test. It's quite expensive--over $4000 I think. Low scores help people decide not to do radiation which would cost an insurance company much more than $4000, so it's worth it to them.

  • savgigi
    savgigi Member Posts: 376
    edited June 2015

    My med onc ordered the test but there was not enough tumor left after pathology to do it. My tumor was 4 mm.

  • Moderators
    Moderators Member Posts: 25,912
    edited June 2015

    Hi Key-

    We want to welcome you to our community here at BCO. We're sorry for the circumstances that bring you here, but we're glad you've found us, and hope you find the support you need!

    We're glad to hear that you were tested, and were able to start rads when it came back so high. Thank goodness you decided to do the test! We have some information on our main site about the different types of tests, and what the scores can mean that you might find helpful. You can find that here.

    Good luck with your treatment, and again, welcome!

    The Mods

  • key46
    key46 Member Posts: 6
    edited June 2015

    Hello moderators

    Thank you for the information. There is a mistake regarding the DCIS oncotype score on the link you sent. That link makes it look as if the original oncotype score for early invasive cancer and the DCIS range are the same: (copied from site)

    "Oncotype DX test results assign a Recurrence Score — a number between 0 and 100 — to the early-stage breast cancer or DCIS. You and your doctor can use the following ranges to interpret your results:

    • Recurrence Score lower than 18: The cancer or DCIS has a low risk of recurrence. The benefit of chemotherapy for early-stage breast cancer or radiation therapy for DCIS is likely to be small and will not outweigh the risks of side effects.
    • Recurrence Score between 18 and 31: The cancer or DCIS has an intermediate risk of recurrence. It's unclear whether the benefits of chemotherapy for early-stage breast cancer or radiation therapy for DCIS outweigh the risks of side effects.
    • Recurrence Score greater than 31: The cancer or DCIS has a high risk of recurrence, and the benefits of chemotherapy for early-stage breast cancer or radiation therapy for DCIS are likely to be greater than the risks of side effects.

    However the DCIS range is different:

    Low is anything lower than 39; intermediate is 39-54; and high is greater than 54.

    Thanks for your good work. I've learned so much from this website!

  • Moderators
    Moderators Member Posts: 25,912
    edited June 2015

    Thanks Key! We'll take this information back to the editorial team and make adjustments as necessary.

    Thank you!

    --The Mods

  • Luttece
    Luttece Member Posts: 35
    edited July 2015

    I was diagnosed with stage1 breast cancer after a lumpectomy with no lymph node involvement and clear margins

    I had the oncotype DX testing done and it is 20. Anyone out here with with anything similar like this?

    My oncologist suggested chemotherapy to reduce the risk of recurrence. Confused.

  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2015

    I had the Oncotype test done as well. I have IDC, Stage II, Grade 1. My score came back@11. I had a lumpectomy and 33 RADS treatments. Currently on Tamoxifen. 4 years out from treatment. A lot of Oncologists are using this test because it gives their a better idea about what treatment to prescribe. In fact my ONC was ambivalent about whether I should have chemo or not because I had a micromet in my SN. She ordered the test and my insurance company paid for it too thankfully. It is pricey but they will work with you if you have to pay out of pocket usually at a reduced rate. I was so relieved when my score came back so low. Non-aggressive tumor as well. I am sure your doctor was surprised by the high score and while I know you are concerned about it at least now you know what you could be dealing with in the future. We are all afraid of recurrence and while there are no guarantees that test is a decent barometer of recurrence percentages.

    Good luck.

    Diane

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited July 2015

    if I am not mistaken, the Oncotype dx score has nothing whatever to do with deciding whether to do radiation.

    The test assumes the patient is already doing to take 5 years of hormone therapy- that benefit is already included in the recurrence score. The MO and patient then use that information to decide whether chemo will be beneficial. Not rads.


  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited July 2015

    lutt....since your score is in the dreaded intermediate Oncotype DX score, ask your doctor if you qualify for the mammaprint test....similar to OncotypeDx, it will give more info whether or not you can benefit from chemo. Also ask if your case can be reviewed by a tumor board. Good luck!

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited July 2015

    jackie...for those who have DCIS....NON invasive cancer, the OncotypeDX test is used to determine if radiation is warranted. The folks who created the test now have several types of Oncotype tests for several types of cancer....

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited July 2015

    I just looked it up since I was so surprised to see it. I stand corrected. It can also help to determine if rads are helpful after dcis surgery. Mea culpa. It seems so odd to me that it would therefore not be useful say, for a woman with IDC, who prefers not to chemo but might consider rads.

    I thought I was beginning to figure all this out. Nope!!

  • eellek
    eellek Member Posts: 25
    edited July 2015

    My Oncotype Dx test came back at 7, 6 %. I spoke with Surgeon & Radiation Dr. both said that meant No Chemo.! but I will do Radiation and Hormone therapy. I will be starting Radiation in August 2015, then I assume Hormone therapy after that.

  • Annette47
    Annette47 Member Posts: 957
    edited July 2015

    Just to make it clear for folks who may be reading - there are two different Oncotype tests. Once which is used for invasive which estimates the chances of distant recurrence (and thus the need for chemo) and assumes the use of anti-hormonals and a DIFFERENT test that is used for DCIS and calculates the risk of local (only kind you can have with DCIS) recurrence to make decisions about radiation.

    They are not the same test and the numbers are not necessarily interpreted in the same way. The original thread was started about the Oncotype for DCIS (which I didn't have by the way) but several people who have posted had IDC and most likely had the Oncotype for invasive cancer.

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited July 2015

    thank you for that clarification, Annette! Needed that!

Categories