Histiocytoid Lobular with IDC...anyone else have this?

Cynbest
Cynbest Member Posts: 47
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi,

 I was  just diagnosed with IDC and Histiocytoid lobular and DCIS. 1.4cm node neg/ER+PR+ HER2neg. I am FREAKED out by the histiocytoid..never heard of it. My BS (amazing woman) said it doesn't matter the type, but this scares me as it says more aggressive in anything I read on line.

Anyone have words of encouragement for me? I have been obsessing to the point I can't do anything else!!

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  • Cynbest
    Cynbest Member Posts: 47
    edited May 2011

    Anyone?!! I am really hoping there is another one out there...!!!

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  • kira1234
    kira1234 Member Posts: 3,091
    edited May 2011

    Cynbest, I have to say I had never heard of it till your post. You are node negative which is good. Wait till you get the full path report, that should give you more of a complete picture. I sure hope others will chime in who have more knowledge than I. Weekends can be very slow.

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  • Cynbest
    Cynbest Member Posts: 47
    edited May 2011

    What makes me nervous is that all the BS's I saw recommended lumpectomy only based on the tubulolobular diagnosis. Now I feel like I am back at square one! I am told the "type" doesn't matter as much as the size, nodes and HR status but this leaves me rattled. It also stated on my report that "suspicious focus lymphatic invasion identified" My BS says that is nothing and that I should not give it a 2nd thought. She said I had the best type of patholoby one could hope for. (I of course would have preferred "not present"' and stuck with the tubulolobur scenerio. I am not sure which one of these has me more FREAKED out. I called my radiologist, who first found it, and he concurred with her. Even though they say this it is still paralyzing me. It feels worse than receiving my initial diagnosis.

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  • Gitane
    Gitane Member Posts: 1,885
    edited May 2011

    Cynbest,  I wish I could help, but I know nothing about this.  Getting another opinion from a different source and specialty helps sometimes, especially if they are not at the same cancer center. (that is different pathologist and oncologist, etc.)  Also, asking that Oncotype be done on all the tumor types found may give you more information, too.  I know it is hard to be "different".  Lots of luck.  G.

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  • Cynbest
    Cynbest Member Posts: 47
    edited May 2011

    Thanks Gitane,

    My biopsy said tubololobular which was "good kind". Done at Mt Sinai, final path also at Mt Sinai. Meeting with an Onc there but also will meet with an Onc at Weil Cornell. They asked for the slides and I am assuming will do another path on it. Will definitely ask for the Onco type.

    When you say have the test done on all the tumor types, does that mean they don't usually do the whole tumor? mine was all mixed in one Do they average the score out? Ugh, one more thing to be overwhelmed about!! :)

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