Luminal B Cancer Prognosis - Anyone

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WifeWBC
WifeWBC Member Posts: 53
edited June 2014 in IDC (Invasive Ductal Carcinoma)

My 40 year old wife is diagnosed with Luminal B subtype of ER positive BC.  It was something of a kick in the teeth as we originally expected a more positive outcome with her IHC score of 95% ER positive.  Our understanding now (some time after we received initial pathology) is that this form of BC might not be responsive to endocrine therapies, and that outcomes are distinctly poorer.

Does anyone have any experience with this form of cancer and care to share their story with everyone?

We're hoping to decide on a course of therapy, and have yet to see MO regarding this.  We're also concerned about the vailidity (worthiness) of an Oncotype DX RS score given that my wife's cancer might turn out to be unrespeonsive to endocrine therapies (like Tamoxifen - sp?).

Thanks

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  • doxie
    doxie Member Posts: 1,455
    edited February 2014

    I strongly suggest that the BC tissue be sent for Oncotype testing.  This gives you additional information to work from and acts as a second opinion.  Sometimes there is a discrepancy between the two tests, but usually they line up  

    My BC was Luminal B and my Onco score was 30 with my ER at 95%.  This indicated that chemo and anti-hormonals would be effective on my type of BC.  I believe AIs work better with Luminal B, so if your wife is not yet post menopausal, then the doctors can suggest treatment options to allow her to take these drugs.  Luminal B is not a death sentence.  It is very treatable with many ways to lower the risks of it returning.  

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    I belive Doxie is right in that Luminal B type responds better to hormonal therapies than Luminal A.  At least that is what I got from a couple of articles on the subject.  But if she is grade 3 on the grading scale, she will get the most aggressive therapy without a doubt.  --

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  • doxie
    doxie Member Posts: 1,455
    edited March 2014

    I guess I wasn't very clear.  AIs work better than Tamoxifen for Luminal B.  So if you are pre-menopausal, you might enquire about an oomph or a drug to shut down your ovaries.  I'm post-meno so didn't have to deal with those decisions.

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  • Srh242
    Srh242 Member Posts: 328
    edited March 2014

    WifeWBC : I am wondering if you got the oncotypa and results.

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  • jojo2373
    jojo2373 Member Posts: 662
    edited March 2014

    Wife - there are newer tests which more clearly identify luminal B, more so than Onco or Mammo.  However, it is assumed that ER+ grade 3's are almost always lum B.  I am luminal B and had the most agressive treatments.  I have my doubts on the effectiveness of hormonal therapy for us, but am taking just in case.  Yes lum B is aggressive, but remember chemo is most effective on this type!

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  • WifeWBC
    WifeWBC Member Posts: 53
    edited March 2014

    Srh: we decided against Onco test in the end.  Mainly because the cost was not covered, but also the fear of not treating a potentially aggressive cancer with what has worked to date.  That is chemo, rads and endocrine therapies.  

    An Onco DX low score does not guarantee no recurrence, and we theorized that perhaps it is the luminal B subtypes that account for recurrences, when not aggressively treated.  Well, that was our rationale.  That the luminal a types are getting better outcomes and predictions.

    Wife started chemo yesterday. 6 rounds of TAC and so far so good.  Very difficult waiting and wondering how she will respond the barrage of drugs now.  There is nothing I can do for her but sit by her side and hope she gets rest, and responds well.

    We will never be able to say we didn't do all we could.

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  • WifeWBC
    WifeWBC Member Posts: 53
    edited March 2014

    jojo: you have similar diagnoses as my wife.  Did you have an Onco test?  Just curious.  My wife was stage 2b also, but MO suggested low positive PR of 10 % suggested luminal b subtype.  We found it odd that she had no further pathology (Ki 67 or CK 5/6) to go by.  I understood these to be markers for luminal typing.  After reading what we could find on luminal b, and not finding very positive reviews, we decided the Onco test might be a waste, and simply opted for the aggressive approach.

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