Oncologist said OncotypeDX unnecessary - really???

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DTR808
DTR808 Member Posts: 34

Hi! I’m brand new to this board and am so thankful for all of you here as you all have been a great resource and a huge source of comfort to me during this crazy and scary time!

1 1/2 weeks out from Surgery (sentinel node biopsy and double mastectomy) and spoke briefly to my Oncologist yesterday regarding my full post-surgery path report. Will have more details in a couple days at my appt to discuss treatment options with him.

Before my surgery, I pushed the issue of possibility of OncoDX and/or MammaPrint and said we’d have to wait until after surgery to see if that was even necessary or if it makes sense to have the testing done. Well, yesterday on our phone conversation he said that the testing was not necessary and this is what I’m assuming why, is because a had 1 positive lymph node out of 7. He advised that chemo is necessary and radiation also a possibility.

I am going to get a second opinion, but I know that OncoDX is used highly for those with DCIS, but in reading other boards here, I see that a lot of you with IDC and lymph node involvement got the OncoDX so am a little worried that my Oncologist dismissed this. Again, I need to preface this in that I had a quick conversation with him yesterday because my appt with him to discuss my full path report was set for Monday, but I did not want to wait until then to get my initial results and his initial, overall feedback so he may have other reasons for backing up his statement that having this testing was not worthwhile and would not change the treatment plan.

Should I be concerned that he is not recommending this important genetic test? Really freaked out and scared with the thought of chemo and/or radiation. Thank you in advance




Comments

  • Runrcrb
    Runrcrb Member Posts: 577
    edited May 2018

    The oncotype test is an analysis of your specific tumor (different from genetic testing for known genetic markers). My surgeon submitted the tissue for mine, not my oncologist. I would get a second opinion if it were me. My test came back with low likelihood of recurrence and if not for the # of lymph nodes with cancer, I would have been a candidate to skip chemo. But my numbers did lead my oncologist to order less chemo than if my scores had indicated a higher likelihood of recurrence.


  • Moderators
    Moderators Member Posts: 25,912
    edited May 2018

    Hi DTR and welcome to Breastcancer.org,

    In addition to the helpful advice Runrcrb provided, you may be interested in checking out the main Breastcancer.org site's page on Oncotype DX testing.

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

    --The Mods

  • Jackster51
    Jackster51 Member Posts: 357
    edited May 2018

    I would certainly get the test done. Knowledge is power, the more the better.

  • letsgogolf
    letsgogolf Member Posts: 263
    edited May 2018

    If you are ER and PR positive and Her2- you should definitely have one of those tests. Otherwise, how could he possibly know for certain that chemo would help? What was the grade and type of tumor?


  • gb2115
    gb2115 Member Posts: 1,894
    edited May 2018

    Some oncologist are really aggressive when you have that positive lymph node. Is there any chance your cells are grade 3?

  • DTR808
    DTR808 Member Posts: 34
    edited May 2018

    Thank you all for your responses so far! Grade 2 (I had 2 tumors) and am ER/PR+, HER 2-.

  • Polly413
    Polly413 Member Posts: 124
    edited May 2018

    I was stage IIA and grade 2 with one lymph node positive. My oncologist ordered a Mammoprint and said the chemo decision would be based on that. It came back "high risk" and I did have chemo. The point is that if lymph node involvement alone were the deciding factor, she would not have ordered the Mammoprint which showed if my particular tumor would respond to chemo. I read an article recently that said underarm lymph node involvement is an indication of risk but that the possibility of distant mets is not determined by underarm lymph node involvement. He described it as having a speeding car and removing the speedometer: removal won't slow the car down. I believe it used to be that the Oncotype test was not used if even one lymph node was positive but that has changed and the test is used even if a lymph node is positive but I do know that Mammoprint test is used with lymph involvement. If on the other hand you are grade 3, that alone might warrant chemo without further testing. So I agree with the advice above to get a second option from an oncologist.

  • DTR808
    DTR808 Member Posts: 34
    edited May 2018

    Polly413 -Very much appreciate your response/feedback! Hope you are doing well now

  • PatsyKB
    PatsyKB Member Posts: 272
    edited May 2018

    Thank you, DTR808, for starting this topic. I am just about a week out of my lumpectomy and sentinel node biopsy (clean margins, clean nodes). I have IDC, ER+, PR-, HER2-. And I too want to have the oncotype testing done. My surgeon had indicate that it would be the medical oncologist who would order the test. (I meet with surgeon, med onco, and radiation onco in a couple of days.) I REALLY want to have this additional piece of information about recurrence.

    But I'm not sure how hard I can push for the testing or if I can insist on it. I'm the customer, right?

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited May 2018

    Hi all. Just chiming in to say that if you meet the criteria, definitely push for the Oncotype DX test, both with your MO and with your insurance company. It's a pain for doctors to order, since it requires the surgery, oncology, pathology and finance offices of the hospital to work together (smile), but it is a solid test that provides good data.

    Here's some info from the main part of this website - it reflects the thinking that the test is not necessary if there is lymph node involvement, which is what makes insurance coverage hard and doctors hesitant:

    Who is eligible for the Oncotype DX test?

    You may be a candidate for the Oncotype DX test if:

    • you've recently been diagnosed with stage I or II invasive breast cancer
    • the cancer is estrogen-receptor-positive
    • there is no cancer in your lymph nodes (lymph-node-negative breast cancer)
    • you and your doctor are making decisions about chemotherapy.

    Most early-stage (stage I or II), estrogen-receptor-positive breast cancers that haven't spread to the lymph nodes are considered to be at low risk for recurrence. After surgery, hormonal therapies such as an aromatase inhibitor or tamoxifen are prescribed to reduce the risk that the cancer will come back in the future. Whether or not chemotherapy is also necessary has been an area of uncertainty for patients and their doctors.

    If you've been diagnosed with early-stage, estrogen-receptor-positive breast cancer, the Oncotype DX test can help you and your doctor make a more informed decision about whether or not you need chemotherapy. (Some research also suggests the test may help postmenopausal women with estrogen-receptor-positive breast cancer that has spread to the lymph nodes make chemotherapy decisions. Talk to your doctor if you are in this group.)

    You also may be a candidate for the Oncotype DX test if:

    • you've recently been diagnosed with DCIS
    • you're having lumpectomy to remove the DCIS
  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited May 2018

    Dtr808- My onc also did not run the Oncotype for me, she said because I was young with a positive node, chemo was a given. I got a second opinion at Dana Farber and they were the ones who sent it out for testing. It came back low, so I chose to skip chemo, but I did have to do rads because of the positive node. You don’t mention your age, but that may also play a role. There are some docs who don’t put a lot of faith in the Oncotype either, so it could be that

  • windingshores
    windingshores Member Posts: 704
    edited May 2018

    Just want to mention that a pretty large percentage of grade 3's= around 30%=  have low Oncotype scores.  I had grade 3 with LVI and my score was 8- no chemo.  (It has been more than 3 years and sometimes I am still worried about such strong reliance on one test.)

    The company that puts out the Oncotype Dx, Genomic Health, has folks on the phone to answer questions, if that helps.


  • DTR808
    DTR808 Member Posts: 34
    edited May 2018

    cpeachymom- I'm 44, so l guess that's considered a young age to be diagnosed with BC.

    Windingshores- thank you! Great idea! I will call!

    PatsyKB - yes! We need to make sure we're our own best advocate!

    Thank you all for the replies! First day on the forum and already feeling extremely uplifted by the support. I find myself in waves of sadness and depression - it helps to talk to others who understand exactly what I'm going through. :

  • DebAL
    DebAL Member Posts: 877
    edited May 2018

    Good morning, oncotype threads always catch my attention. Winding shores, I agree about the strong reliance on one test. I look at is as another piece of the puzzle. My oncotype was ordered by my surgeon and was sent 3 days later , after final path was done at the hospital. Like you said, Grade 3s with LVI can have a low oncotype. I had stage 1, grade 1 ( mitoitc, nuclei -1, ki 67- 24% ...which is confusing given my stage 1), clear margins and nodes neg but oncotype score of 27. PR 3% is what raised my score I believe. It all boils down to choice once you consider ALL of your information. Sometimes there is enough information where oncotype may not be needed, just ask. 27 was too close to high risk for me so chose to bust out the 4 rounds of chemo. Another member on our forum had a score of 31 opted out of chemo, took AIs for awhile and is many years out!!!. Never be afraid about being your own advocate. I remember what my surgeon said. "This is YOUR cancer and you have the right to understand it" as much as we can anyway.

  • bluepearl
    bluepearl Member Posts: 961
    edited May 2018

    I asked for an oncotypeDX for my second b.c....7mm and grade 3 but my oncologist said my treatment recommendation would be the same....no chemo, no rads, and I had a mastectomy....no nodes, no LVI. I always worry about the grade 3 bit myself. But it is done and over. So I worry not so much so it doesn't ruin my life that has been saved. I agree that you should always be your own advocate, as much as many doctors dislike this. As long as you are using reliable sources for information, it should be a welcome addition to a doctor's recommendations.

  • pupmom
    pupmom Member Posts: 5,068
    edited May 2018

    Oncotype DX criteria includes that it can be used for patients with 0 to 3 positive nodes.

    Saying that it is only available for node negative patients is incorrect. I had 2 positive nodes, got the test, (insurance paid 100%), and avoided chemo because of a low score.

  • Polly413
    Polly413 Member Posts: 124
    edited May 2018

    I am not sure why my MO ordered a Mammaprint instead of Oncotype. I have read that some doctors consider Oncotype unreliable but I was satisfied with the Mammaprint recommendation and didn't ask my doctor why she chose that. Sometimes doctors may not recommend something because they know your insurance won't cover it so I sometimes ask if that is a factor in whatever decision is being made for me but didn't about this test. ( I am on Medicare and AARP United Healthcare Ins.) Mammaprint gives you a high risk or a low risk rating -- no in-betweens. I understand that one reason some doctors do not order Oncotype is that there is a range in the middle of the numbers where the effect of chemo is unclear and Mammaprint was developed to remove that issue. I don't know. My risk although "'high", was 14 on a scale of 1 to 100 so consider it "low" high risk if you see what I mean. But if I had been "low risk" with a score of 99 on a scale of 1 to 100 low risk (with 1 being the lowest) and was thus "high" low risk, I might have worried about skipping chemo. It is confusing for sure.

    DTR808: to answer your question about how I am doing, just had my one year post diagnosis mammogram and there was a questionable "spot" but likely just a benign bit of scar tissue. Will have a 6 month recheck. So doing okay at this point. Thanks for asking. Polly

  • gb2115
    gb2115 Member Posts: 1,894
    edited May 2018

    My oncologist said the research is better with mammaprint compared to the other tests. She said eventually standard of care will catch up (and since then it was added to the official guidelines as an option) but that many docs are still ordering certain tests because it is what they are comfortable with.

  • DebAL
    DebAL Member Posts: 877
    edited May 2018

    Polly, i understand what you are saying about the high low thing, it is confusing! There is a gray area in the oncotype. The tailor x study results come out very soon. In that study, I believe, but not certain that 26 is considered high. It did make my decision (27..so "high" intermediate range ) to be a little easier than had I fallen in the lower 20 range. Confusing for sure!

  • DTR808
    DTR808 Member Posts: 34
    edited June 2018

    I posted the following on another topic but since so many of you kindly replied with your feedback, I thought I’d update those who were curious about what ultimately cameof my situation here.

    After my original post above, I pushed my MO to order both the OncoDX and Mammaprint tests (which both cane back low). I also went and got a second opinion. Coincidentally, my original MO advised that I could forego chemo (go figure), but my second opinion MO advised that I could benefit a little from it (ultimately that was her suggestion) but could also choose to forego it (which she was ok with but if she had to choose, she told me she’d prefer I do it).

    I had a connection through a coworker to get access to Laura Van’t Veer (inventor of Mammaprint), so thought I’d be crazy to not call in this favor to connect with her and get he feedback. Here goes...

    ———-

    Thanks again to all who've provide their feedback regarding my original post here.

    I have finally gotten my "3rd and final opinion" from Laura Van't Veer (inventor of Mammaprint) and I'm excited to say, nooooooo chemo!!!!!

    The main takeaway from her feedback to me was that while from reading my path, the characteristics of my tumor were intermediate (grade 2, stage 2) so while one could interpret this to be a grey are or mid-range wanting to err on the side of caution and advise that chemo should be the course of treatment, looking at the biology of the tumor itself ismore important and more, in her words, "meaningful".

    I didn't want to copy and paste her entire email to me as it's quite lengthy, but wanted to at least on some of the more important parts that others might be able to learn from or takeaway here. Keep in mind, her life's work has been and continues to be BC research through the lens of a molecular biologist therefore, she is always on the cutting edge of data research:

    1 node positive, is not negative of course, but one is recognizing more and more that up to 3 positive nodes is leaning for risk of recurrence more towards negative, certainly if only 1 is positive.

    Oncotype is 16, which is at the border of low to intermediate. The Tailor X trial just showed that this score, 16, patients did not benefit from chemotherapy. Though there is some debate about whether that is true for women under 50. However, there might be a little benefit, but that is not very much.

    MammaPrint is +0.339, which is clearly low risk. The Mindact trial has shown that even for women who have 'high clinical risk features', but their tumor biology is MammaPrint low risk can forego chemotherapy. Their benefit is clinical not meaningful, and not more than 1-2% (meaning that of 100 such patients treated by chemotherapy, up to 2 will benefit, but according to preset criteria in the trial, that would be outweighed by the (short and long term) negative side effect of chemo.

    My conclusion based on level 1 evidence data:

    The patient is considered clinical high risk (for recurrence), but both Tailor X (Oncotype Low/lower end of Intermediate), and Mindact (MammaPrint low risk), have shown that chemotherapy does not give any clinical meaningful benefit. For this exact situation the ASCO organization recommends that patients can consider to forego chemotherapy.

    ———-

    Lastly, she confirmed that my proposed chemo of TCx4, while on the lighter side of chemo, was still too much in her opinion. The proposed hormonal therapy for 5-10 years she thought was justified at five years but should revisit thereafter whether or not the additional 5 years would be necessary.

    I am hoping this helps at least one person or gives someone the peace of mind knowing they made a good decision for themselves to forego chemo based on the unique biological characteristics of their tumor. My hope is that soon, more and more doctors will acknowledge this and wrap their arms around this not-so cookie cutter approach and that BC is not a "one size fits all" deal. If I had just accepted what was advised during my first, surgical path follow up meeting with my first MO (that I would def need chemo and that the OncoDX and Mammaprint tests "weren't necessary because I was young and LN positive"), then I would be one TC infusion down out of 4, by now.

    Another reminder that YOU are your best advocate! Cheers ladies!!!

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