Anyone with DCIS had the Oncotype test?

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

     lee7

    Because my DCIS is 100% hormone receptive and Tomoxifen blocks those hormones.  

    I am thankfull they are not putting me on those other meds with the awful side effects.   Tomoxifen will not hurt my bones like the others do.  I have no uterus so no cancer there.  All my doctors, surgeon, oncologists, primary care, all said Tomoxifen and I am happy to go with that.  Tomoxifen is often prescribed for women like me.

    It is surprising how much estrogen we produce with no ovaries.  Men do too.

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  • Neeners815
    Neeners815 Member Posts: 358
    edited June 2012

    Infobabe - I'm sort of wondering if your doctor isn't familiar with the Oncotype test for DCIS patients in determining if they should have rads or not.  It's pretty new, and even at my breast center they had only heard about it a few days before my post-op surgery, so I was the guinea pig on the test (and dang it, I failed!).

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

    Neeners815

    I think this is true.  I think they don't want to know until it becomes Standardof Care. 

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

    Can you answer this question?  I have found among my saved documents that the DCIS must be 2.5cm.  Mine is 1.0cm.  Does that mean I am disqualified?

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  • JamieB86
    JamieB86 Member Posts: 397
    edited June 2012

    Does it say it must be less than 2.5 cm?  I know I had too much DCIS to use my score.

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

      JamieB86

    This is what it says.  Looking at it again, is that smaller than 2.5?

    Note however that the test is for patients who have low or intermediate grade DCIS that is ≤2.5 cm in size, or high-grade DCIS that is ≤1 cm. 

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012
    JamieB86 This is what it says.  Looking at it again, is that smaller than 2.5?Note however that the test is for patients who have low or intermediate grade DCIS that is ≤2.5 cm in size, or high-grade DCIS that is ≤1 cm. 
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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

    Tomoxifen if often given to post menopausal.  My DCIS is about 100% ER/PR+.  Thank god I don't have to take those other poisons with the dreadful side effects.

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  • julz4
    julz4 Member Posts: 2,490
    edited June 2012

    I'm reading all this....but WHY? So where does that put me at 2.8cm DCIS-MI. I know the BS & MO were talking on the phone with me there about my path results. The MO who I don't see till the 18th suggested this test if my HER2 comes back neg...I think!?!

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

    Yes, the HER must be negative.  ER/PR+

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

     Neeners815

    You are so lucky.  They didn't even know about it and ordered it for youi anyway.  I am fighting headwinds. 

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

    I think I may have answerd some of these post twice.  Please forgive me.  This oncotype thing is making me crazy.

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  • JamieB86
    JamieB86 Member Posts: 397
    edited June 2012

    Infobabe - that symbol means equal to or less than so you should qualify

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  • JamieB86
    JamieB86 Member Posts: 397
    edited June 2012

    julz4 - if you had a micro invasion, I don't think the Oncotype for DCIS will be for you, but not 100 % sure on that.  Let us know what the good doctors tell you.

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  • Lee7
    Lee7 Member Posts: 657
    edited June 2012

    I don't know if there is a difference in the Oncotype test for DCIS or IDC but you can get an Oncotype done it even if you have invasive with 1-3 positive nodes.  It gives a score that gives more info about how aggressive the cancer is.  It can also help confirm ER, PR and HER2 status.

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  • JamieB86
    JamieB86 Member Posts: 397
    edited June 2012

    There is one for invasive cancers that helps to determine chemo treatments I believe.  The test for DCIS is different.

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  • julz4
    julz4 Member Posts: 2,490
    edited June 2012

    Jamie...I will let you know. New things up & coming for DCIS. I'm in the gray zone. They don't know what to do with me yet until HER2 results.

    Lee the nodes were clear.



    I guess it all boils down to needing to know! The waiting is long I started this journey march 8! I have part of the plan started, just wondering what's next?

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

     julz4

    That's what I would need too.  The HER + or- test.  They do not do that routienly fpr DCIS.  There is a whole lot of things they do not do. 

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  • julz4
    julz4 Member Posts: 2,490
    edited June 2012

    Info....your right. I think they did it because of the grade 3 & the micro invasiveness of mine. Also much larger than first seen on mammo & US.

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  • aanyclk
    aanyclk Member Posts: 1
    edited June 2012

    Yes. I had the Oncotype DX test in April to determine my recurrence score (which in turn would signal to me and my onco whether I was a good candidate for chemo prior to rads). I thankfully ended up with a low onco score and was able to forego chemo and start with radiation. Mine was 100% covered by my insurance, so I would suggest calling the Onctotype folks directly; it's a lab in California and they have a great group of customer service people who can maybe check, and check with your insurance company too. Good luck to you.

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

    aanyclk

    I did email there yesterday and was answered promptly.  I am hoping for some answers from them.  Being the weekend, will probably be tomorrow. 

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  • redsox
    redsox Member Posts: 523
    edited June 2012

    Infobabe wrote:

    Note however that the test is for patients who have low or intermediate grade DCIS that is ≤2.5 cm in size, or high-grade DCIS that is ≤1 cm.

    Those were criteria for the underlying study used for the analysis of Oncotype DCIS Score reported in December.  If you don't meet them it is reasonable to question whether the test applies to you.  Infobabe seems to meet the criteria.

    There can be other factors that put a particular patient at high risk but without those, it seems like a good idea to have the test.

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

    Exactly, and what harm can it do. I go for my simulation at 1 pm today.

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

    Well, I got a call from the U of Michigan and they do not do Oncotype for DCIS.  So I am off to the RO and try to convence him.  Since U of M doesn't do it, I doubt he will differ.  

    From everything I read, I should not be having rads. 

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  • JamieB86
    JamieB86 Member Posts: 397
    edited June 2012

    Infobabe - you need to be comfortable with your treatment.  The doctors will want you to have the rads, but the final choice is up to you.  If you had nice big margins after your lumpectomy, you may feel comfortable saying No Thanks.

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

    JamieB86

    I will never be comfortable, but the truth of the matter is that I am about 5 years ahead of the curve.  He said I could wait.  He is a joker.  That is part of the problem as he has quite a personality and it is hard to argue with him.

    My RO said he would order the DCIS but he wouldn't base any medical decisions on it.  I would have to pay the $4,000. 

    There is also another gene test that he knew all about and read the extract.  I guess larger double blind studies on these two are proceding.  He also knew about the second gene test and the radiology community is excited about it.  Again, tests done on only a few women.  Double blind is always tough because some are getting denied any treatment at all.

    Soooooo, i start rads June 18 and it goes on for 5 weeks.  Probably 5 weeks and a day since July 4 will be in the mix. 

    Thanks for this support. 

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  • JamieB86
    JamieB86 Member Posts: 397
    edited June 2012

    I know what you mean. Hard to be comfortable with any of this.

    So many of these docs are too charming!

    If you call the company in CA they will work with you on the cost.  They charged me what I would have had to pay if my insurance had covered it.

    Keep us posted!

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

    JamieB86 

    When I hear back from Oncotype, I will ask them about that.   I wonder if I would be obigated to follow up and do what the Oncotype score sugests.  If I do not, there is no point in it.

    Did you hear today that an NBC moring show woman has a pre-leukemia condition caused by rads for breast radiation?   She is getting a marrow transplant from her sister.  I think her name is Robin Roberts.

    Guess that is my problem:  I want to skip rads but am afraid to do so without the blessings of the medical community. 

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  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited June 2012

    It was chemotherapy that is thought to be the underlying cause of Robin Roberts MDS.  It is not clear she had radiation for her breast cancer.

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

    That's what I just found out.

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