Pathology redone issues

mattscot
mattscot Member Posts: 69
edited June 2014 in ILC (Invasive Lobular Carcinoma)

After I got my initial pathology back from NYU medical center  -- which showed both pleomorphic ilc and pleomorphic and classic lcis -- I sent slides to Sloan Kettering NJ for the pathology to be redone I also met with a doctor there.  Well almost one month later I finally get their  pathology report back.  The report consisted of one sentence confirming invasive lobular due to negative cardiem staining. 

Sheesh... nothing about grading, pleomorphic... I am frustrated...

I have already made my treatment decisions  but I really expected more ... I will follow up

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  • nash
    nash Member Posts: 2,600
    edited November 2008

    How frustrating!

    Now, I know not all labs grade lobular (there's debate in the patholgy community whether the SBR scale can be used for ILC in the same manner that it's used for IDC), and in the back of my mind I seem to remember something about Sloan being one of the labs that doesn't grade ILC. So that might be why you're not getting a grade on the path report. I'll try to look that up. 

    But I would have expected more, too, especially with you having such an unusual pathology. Good luck with the followup--I'll be interested in what comes of it.

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  • Gitane
    Gitane Member Posts: 1,885
    edited November 2008

    Wow, that is not what I would have expected from Sloan Kettering.  Obviously you are asking for a second opinion pathology to get information due to an unusual cell type.  They did not really help you.  They didn't even confirm what you thought you knew.  Don't you wonder why they felt they couldn't say more?  E-cadherin staining confirms lobular histology, I guess that's something.  Good that you didn't let the wait for this information influence going forward with treatment decisions.  Let us know what comes of your "follow up".  I'm interested, too.

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  • mattscot
    mattscot Member Posts: 69
    edited December 2008

    As a follow up-- I sent the Sloan pathology report to my doctor-- he confirmed that Sloan is an institution that does not grade Lobular.

    He once again confirmed to me (and I think Nash has referred to this before..) that with respect to treatment most oncologists would not tailor their recommendations on whether it is pleomorphic lobular cancer or not 
    they would use size, nodal status, oncotype, HER2, etc.  he recommended that I not pursue it at this point.  He also confirmed that Sloan tends to be rigid... (he trained there) I can also confirm this based on the recommendations for chemo an my borderline /questionable Her status. (they also did not provide reasons for their conclusions... (that may have just been the doctor's style)

      He also confirmed to me that he thought the hormonal therapy will be doing the heavy lifting in my treatment (and referred to the recent studies on lobular being resistant to chemo.)

    so here we are in our small little pleomorphic club... published articles including several recent articles refer to this subtype as being aggressive... (at least more aggressive that classic lobular) but told by our oncologists there is no difference in treatment.and them shrugging their shoulders as to aggressiveness..   and my "lowish
    " oncotype score...  As usual extreme shades of gray....

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  • nash
    nash Member Posts: 2,600
    edited December 2008

    Thanks for the update on this, mattscot. I'm glad at least they've gotten your HER straightened around. But like you said, as usual, extreme shades of gray. It's like we all just sort of end up going around in a circle with PILC.

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  • Gitane
    Gitane Member Posts: 1,885
    edited December 2008

    I also read some recent reports that were absolutely worthless in their generalities.  I sometimes wonder why they bother to include the pitiful number of random "other types" in these studies with no specifics what so ever as to patient/tumor characteristics, treatments, and with very short follow-ups.  Our little pleomorphic club at least helps us know that our oncologists are not hiding the facts, they literally don't know.  Looks like we know we may have aggressive cell types, possibly poor prognosis.  I haven't learned anything else. Shades of gray....exactly.  At least the Oncotype DX test gives us some genetic information and more informative ER PR levels.  It looks like people are getting HER2 levels with their Oncotype DX reports is that right? 

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  • mattscot
    mattscot Member Posts: 69
    edited December 2008

    Gitane,

    I am thinking that lumping all pleomorphic subcategory into an aggresive category is not accurate -- in the move to individualize what matters more are the ER PR levels , size, nodes...Her2+

    The issue with HER2 and the oncotype is pretty new-- if someone has a high score on the ICH -- the surgeon or oncologist might not even want to do the Oncotype test -- because the probability that the score will come back high (meaning that chemo is indicated)... My view is everyone should still get... the more info the better.  What happened in my case ... was my Her2 score has always been closer to the ecquovcal side --  and the Oncotype result came back clearly negative... (if my HER2 result had been positive .. I believe my score would have dramatically gone up) 

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