Invasive Pleomorphic Lobular Carcinoma

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  • RobinJ3024
    RobinJ3024 Member Posts: 48
    edited June 2018

    Does anyone have any more current information about Invasive Pleomorphic Lobular Carcinoma?

    My path report from the lumpectomy was just released and showed the above. Most of the information that pops up on Dr. Google is somewhat older and therefore, I'm not sure it's reliable. My doctor is on vacation this week.

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  • Almer
    Almer Member Posts: 30
    edited July 2018

    Hi Robin!

    Ihave Stage 3C Grade 3 (pleomorphic) breast cancer and finished treatment a few months ago. I’m now on Arimidex for 7 years. I’m also an RN so have taken real interest in my pathology reports and what they meant.

    What questions do you have?

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  • RobinJ3024
    RobinJ3024 Member Posts: 48
    edited July 2018

    I don't want to be alarmed before I need to be -- but from reading old studies I found online, this appears to be rare and very aggressive cancer. Is that true? Or did I read more into the studies than I should have?

    Looking at my path report, there was no lymphovascular invasion, all the margins were clear, lymph nodes negative, lesion was .9 mm - so I'm thinking we caught it early enough that I shouldn't be overly alarmed. Just trying to keep it all in perspective.

    Almer - glad to hear you are doing well!


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  • gwydiana
    gwydiana Member Posts: 47
    edited July 2018

    Hiya!


    I also was just diagnosed with Pleomorphic Invasive Lobular Carcinoma. It's scarey! I found an amazing local doctor who specializes in it named John Link. He has several clinics named BreastLink.

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  • nash
    nash Member Posts: 2,600
    edited July 2018

    I have had PILC 3x since 2007, and now have just been diagnosed with brain mets. I was always told PILC behaves like a grade 3 IDC

    Gwydiana, I’m so glad I saw your post about Dr Link. I haven’t been able to find anyone in the San Diego area who specializes in PILC! I think my current onc has me on the right protocol, but now that I’m stage IV, it would be good to see a Dr with more in depth knowledge for a second opinion


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  • RobinJ3024
    RobinJ3024 Member Posts: 48
    edited July 2018

    So, where can I get some additional information about this? Everything I find online is older research. I looked up Dr. Link, but I don't see any information about him specializing in PILC. So, I couldn't confirm that on the internet.

    So, does anyone have any links they can post here, so I can educate myself better? I don't know if I should be more worried than I already am or not.


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  • nash
    nash Member Posts: 2,600
    edited July 2018

    http://www.pathologyoutlines.com/topic/breastmalignantlobularpleomorphic.html


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  • RobinJ3024
    RobinJ3024 Member Posts: 48
    edited July 2018

    NASH - THANK YOU! Precisely what I've been looking and could not find.

    My surgeon has seemed to think this is no big deal, but it's not his breast. I have an appt with the radiation oncologist next, and will share with him, and then of course, with my MO who I see for the first time in October.

    I just want to make sure we get this taken care of this first time around.

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  • nash
    nash Member Posts: 2,600
    edited July 2018

    You’re welcome! Best of luck.

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  • gwydiana
    gwydiana Member Posts: 47
    edited August 2018

    Robin,

    Dr. Link wrote an amazing book. https://smile.amazon.com/Breast-Cancer-Survival-Ma...=sr_1_1?ie=UTF8&qid=1533502097&sr=8-1&keywords=dr+john+link


    He has multiple offices in Riverside and Orange County. I'm so very grateful to have found him. His company, NantHealth, does a GPS test on tumors that helps us determine the perfect chemo/radiation therapy to use on our tumors for max effect.

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  • RobinJ3024
    RobinJ3024 Member Posts: 48
    edited September 2018

    Just placing a 2015 study here for reference.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4366360/

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  • Almer
    Almer Member Posts: 30
    edited October 2018

    somehow I totally missed coming back to this thread. It got lost in other notices!

    Though PILC is very aggressive (esp Grade 3), my oncologist said it’s also pretty responsive to treatment. I hold onto that hope

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