Has anyone been told they don't qualify for onco test?

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Beanpole
Beanpole Member Posts: 32

I am having a lumpectomy on Monday and when I met with my onc and asked about doing a oncotype test she said she doubted she would even order it because in her words " I don't qualify". I have a low grade and 90% Er positive. She said the oncotype score wouldn't be anything but low.

She said it wouldn't change her treatment plan. Radiation and hormone therapy. She said Chemo would not even likely benefit me even if it is in a few lymph nodes.

 I am going to Vanderbilt's very progressive Breast Care Center. Has anyone else been told this?

Linda 

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Comments

  • Denise2730
    Denise2730 Member Posts: 648
    edited September 2011

    Will your insurance pay for it? Does she have to okay it before they will pay for this test? Nobody mentioned this test to me at my oncologists. I found out about it through my own research. When I called my Onc he said it "was probably a good idea" since I was refusing chemo. I only had 1 positive node.

    It would seem to me it's your body and you should demand any test you want to keep your mind at peace.

  • Beanpole
    Beanpole Member Posts: 32
    edited September 2011

    I don't think it is an insurance issue. Just her opinion on weather I need it or not. I know I would have more peace of mind.

  • LtotheK
    LtotheK Member Posts: 2,095
    edited September 2011

    I'm no doctor, but that doesn't sound right.  Women can and do get high Oncotype scores with a low grade--I happen to be close to one who did. She had chemo as a result.  Grade is only part of the equation.  I was grade 3, and came back with a low score.  They talk in aggregates, but there are two live people right here who didn't fit the mold.

    I don't get it.  More information is more information.  I would demand the test.

  • prayrv
    prayrv Member Posts: 941
    edited September 2011

    My stats are almost the same as yours, I had the test and came back at 12.

    But there are others out there with the same stats and came back higher, I would push for the test for your peace of mind.

  • LtotheK
    LtotheK Member Posts: 2,095
    edited September 2011

    Also, I strongly recommend a second opinion.

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited September 2011

    Beanpole,

    Upon reading your post and the responses, I would probably take a step back and ask your doctor why she did not recommend chemo in your case. Because if she gives you an answer you are satisfied with and you decide against chemo, then the oncotype test becomes a moot point. If her answer still leaves you uncertain, then at that point you can tell her that getting that test might give you extra information for your own peace of mind before making your own decision. I think any reasonable oncologist should agree to that. The oncotype test has its vulnerabilities (mostly because it's new and there is no long term data on its predictive power yet), but so does everything, and it might be the extra variable you need.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited September 2011

    The oncodx test can be run long after the surgery. I'd wait for your final biopsy results & see if your stats change. If you think you might benefit from chemo, push for it then. My MO didn't want to order it for me either. I was going to turn down chemo, with 2 nodes involved, unless I had a intermediate or high score. My  score was low.

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited September 2011

    Yes, I was told this. Because, in my case, the dangers of chemo outweighed the benefits (chemo can kill, you know)

    And so far, no problems.

  • Leah_S
    Leah_S Member Posts: 8,458
    edited September 2011

    Linda, I would recommend getting a second opinion. It's not so much that she's not recommending the oncotest, it's that she says chemo wouldn't benefit you even if it were in a few lymph nodes. Since that's not what SOC has been for a long time, I would want to talk to someone else about it.

    There's no need to change the date of your surgery. Just speak to your BS or onc and say that, despite the recommendation, you want it done.

    Best of luck.

    Leah

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2011

    I second 1Athena1's recommendation of asking your doctor "why" she is saying no chemo.

    It is my understanding that the slow growing (grade 1) tumors (in general) do not respond well to chemo and since you are highly ER+, it is most likely that hormonal therapy would be much more effective.  Maybe you have a low Ki67 as well (how quickly your tumor cells are dividing).

    My onc had me take the oncotype test because I was "borderline" for chemo.  Although I had a high ER+, <2cm, no nodes ~  I was also high ki67, grade 2 (1st path said grade 3).  My onc wanted to use the oncotype test (as ONE part of the deciding factor) to help decide which side of the fence I would feel most comfortable. :) .... perhaps your onc feels you are firmy on the no-chemo side of the fence.  

  • LtotheK
    LtotheK Member Posts: 2,095
    edited September 2011

    I will simply add there is no way for the doctor to know firmly what side of the fence a patient is on based on grade.  The Oncotype may not be definitive, it may not be time tested.  But it has blown a hole in the theory that grade is entirely predictive.  There are subcategories in these grades, clearly.

  • Beanpole
    Beanpole Member Posts: 32
    edited September 2011

    I do think my onc is firmly on the side of no chemo because of the grade, the fact that many of my cells on tubular, size of tumor, highly ER +, and post menopausal. Don't get me wrong.. I'm thrilled with no chemo but I do not want to be stupid either. I think I will visit the subject with her one more time. I don't mind paying for it. I do think it would provide a certain level of peace of mind if it came back low. It just seems like reading on this board that there have been some suprises in the score.

  • lisa-e
    lisa-e Member Posts: 819
    edited September 2011
    I had oncotype tests run on both of my invasive tumors.  With the first tumor, my onc said he thruogh it was a waste of time, that the score would be low.  I told him I didn't care, I wanted the information it would provide and I was willing to pay for it if my insurance didn't cover it.  The score was 16, so my onc was correct about the low score.  With the second tumor (2 months later, dx after a MRI, at the request of the rad onc) , my onc recommended chemo.  I told him I wanted an oncotype test before I would make a decision.  He said he had never heard of an insurance company paying for two.  I told him I didn't care, so he ordered the test.  The score turned out to be even lower than the first (8) so I opted out of chemo.  

    I think it is worth getting the information. 
     
  • Chocolaterocks
    Chocolaterocks Member Posts: 364
    edited September 2011

    Because of the size of my tumor I was told It would be a waste of time and probably could not be done (3.8mm). I said send it anyway- if there is a problem they'll say so.

    It came back a "1" and I try to use this number to calm my fears.

    Good luck

    CR

  • lassie11
    lassie11 Member Posts: 1,500
    edited September 2011

    Beanpole -  I am in Canada and the onco test is rarely used here.  I think it is because it is crazy expensive and the other factors in the diagnosis pretty much say the same thing. As far as I know, we have similar outcomes.

  • RedheadPam
    RedheadPam Member Posts: 98
    edited September 2011

    I was Stage 1b, Grade 1, <1cm, ER+/PR+, HER2-.  No node involvement. My Dr. felt confident that I would have a low DX score, and was gobsmacked when it came back 30! He said that I was an example of why they do the test.

  • TinaT
    TinaT Member Posts: 2,300
    edited September 2011

    Hi, you can read my stats below.  My oncologist ran the Adjuvent! Online and told me that she didn't recommend chemo.  My cancers were found "very early".  However, she graciously agreed to order the Oncotype DX at my request to ease my mind.  My Oncotype score was 18, the low limit of the intermediate range.  It didn't change her recommendation at all, but it sort of threw me because I thought I'd certainly be in the low range.  But, I still decided on no chemo.

    Best of luck!!!

  • Beanpole
    Beanpole Member Posts: 32
    edited September 2011

    Redheadpam- wow that must have been a real shock! Did it change your treatment plan? I'm planning on showing my Doctor your post.

  • bcisnofun
    bcisnofun Member Posts: 488
    edited September 2011

    I personally wanted all of the information I could get.  I think your Dr is crazy to say even if it's in the lymph nodes they wouldn't recommend chemo.  There's a large study out there now trying to determine if chemo is beneficial in cases like yours with an oncotype between 11 and 18 I think the numbers are. 

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited September 2011

    ER+ tumours don't respond well to chemo. Especially slow growing ones. If they aren't in the 'growing' phase when chemo hits them, it does nothing. They have to be actively growing for the chemo to kill them as the chemo is looking for activity. Slow growing tumours won't benefit.

    Another thing to consider is that the oncotype testing is based on the fact that you WILL take Tamoxifen for 5 years. If you're not going to do it, there's no point of the test! The Tamoxifen is factored into the score.

    I know this post is going to upset ladies that were ER+ and had chemo, but I did a lot of research when diagnosed and knew I wasn't going to be given chemo and I was right! Even my doc said to 'save the big guns until next time'! That time may be nigh as I am waiting for the results of a supraclavicle nodes biopsy!!!

  • RedheadPam
    RedheadPam Member Posts: 98
    edited September 2011

    Linda,

    Yes, it did change my treatment plan.  Original was radiation+Tamoxifen or other AI. Instead, I did 4 rounds of Taxotere/Cytoxan chemo, followed by radiation. Chemo sucked, but was not horribleterrible.

    It was funny - apparently I became somewhat famous among the nurses and other doctors in the practice because there was much discussion about my results.

  • D4Hope
    D4Hope Member Posts: 352
    edited September 2011

    My score was 20 and tamoxifen was not factored into it. I did the chemo before I got the onco test because my first onc was an ass an did not order it, but that is another long drawn out story. Did the chemo because I had a tumor that was nearly three centimeters and a grade 3. My new onc said she would have suggested chemo with the score I got. The onco test determines the chance for recurrance. With chemo and tamox my recurruance rate is now 7% instead of 20%. So they say.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited September 2011

    D4Hope, the ocotype test always factors in Tamoxifen. That's the whole point of the test.

  • lisa-e
    lisa-e Member Posts: 819
    edited September 2011

    It is inaccurate to say that the whole point of the onctoype test is to factor in tamoxifen.  It is more accurate to say that the recurrence score assumes five years of tamoxifen and gives you the additional benefit (or lack of benefit) you would get from chemo.  The point of the oncotype test is to determine the benefit of chemo. 

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited September 2011

    There is no use doing the onc test unless you are going to take 5 years of Tamoxifen as that is what the resulting score is based on. So if you got 30, don't do chemo and no Tamox!!

    I probably worded is wrong as the whole point isn't to factor in Tamoxifen, but the whole point of the test INCLUDES 5 years of Tamoxifen. It would be false information if someone didn't realize that they HAD to take Tamoxifen with their score. So if someone doesn't want to take Tamoxifen, there's no point in taking the test.

  • lisa-e
    lisa-e Member Posts: 819
    edited September 2011
    While the oncotype test presumes five years of tamoxifen, I think there is a point obtaining the score even if you were to decide you didn't want to take tamoxifen.  The score gives you a recurrence rate with tamoxifen - knowing that tamoxifen reduces recurrence by about 50% (that is a relative figure) you can use the score to calculate your recurrence rate if you decided not to take tamoxifen.    

    Combining my two oncotype scores, I figure I had a recurrence rate of slightly under 16%.  Without tamoxifen, my chances of recurrence would by about 32%.   (32% - (32%x50%) = 16%.  So I think tamoxifen (actually an AI now) is worthwhile.  Someone who had a lower recurrence score, say 2%,  might make a different decision.  Without tamoxifen their chances of recurrence wouldn't change that much - it would go to 4%.   If I had a recurrence score that low and had significant side effects from tamoxifen, I would be less motivated to take it.
     
    The more data you have the better. 
      

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited September 2011

    But lisa, those people with low scores already have the Tamoxifen in the equation. If they take Tamox out of the equation, their recurrance risk number would go up!

  • lisa-e
    lisa-e Member Posts: 819
    edited September 2011

    Barb, I totally agree with you.  But it is a matter of degree...re-read my post.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited September 2011

    lisa, I don't know where the 32% came from or what it is supposed to mean!

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited September 2011

    Hmm. If that is 32% was your score, I don't see how you can get an onco type score WITHOUT the Tamox already factored in. But if that's the case, your risk goes up to 24%. Half of 16 is 8.

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