Breast cancer to the GI tract

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KBL
KBL Member Posts: 2,521
edited June 2020 in Stage IV/Metastatic Breast Cancer ONLY

I’ve been on the site since May of 2019. I am still trying to find anyone who’s had breast cancer spread to the GI tract. I just had another endoscopy after a year. It’s showing in my angularis, antrum, and gastric body. My cancer was de novo Stage IV with no known primary.

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  • BevJen
    BevJen Member Posts: 2,523
    edited June 2020

    KBL,

    I also have lobular, but to my knowledge, it hasn't yet gone to any of those places. However, Lobular does goes to very strange places. I'd try to find a doctor for a second opinion who specializes in lobular. Rachel Jankowitz at U Penn comes to mind. She has a special interest in lobular and may be able to help you with some additional information.

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  • KBL
    KBL Member Posts: 2,521
    edited June 2020

    Hi, BevJen! I’ve had a second opinion. I was just curious if I’m the only one in this forum who has it metastasized to my stomach. It’s very rare. I’ve had three biopsies in the last year. My second opinion was at Moffitt. I’ve been on Ibrance and Letrozole so far. Lobular is very weird, for sure. Thank you for responding. I’ll look up the doc at U Penn. It never hurts to get as much info as you can.

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  • BevJen
    BevJen Member Posts: 2,523
    edited June 2020

    KBL,

    There is a thread called Lobular Sucks, and one of the folks on there actually met with Dr. Jankowitz. That's a thread that you should look at -- it's pretty new, and not terribly long. I recently did a consult with Dr. Massimo Christofanilli, who is now at Northwestern but used to be at MDAnderson and also at Sloan. He also has some interest in lobular. Lovely man.

    I've got one for you -- my original metastases, in 2006, was on the top of a small polyp that was on my cervix -- found by my gynecologist during part of a routine gyn exam -- she commented at the time : well that's weird -- don't think I've ever seen that before; think I'll send it to biopsy. Then bam, came back same as my original cancer from 2003.

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  • KBL
    KBL Member Posts: 2,521
    edited June 2020

    Oh, my goodness. Thank goodness she questioned it and had it checked out.

    I have seen that Lobular Sucks thread. I’ll go back and read It from the beginning.

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  • JFL
    JFL Member Posts: 1,947
    edited June 2020

    KBL, GI mets is certainly uncommon but I have seen a few people on BCO who have had that over the years (all with ILC). You may want to try to do some searches on "GI" or "gastrointestinal" mets in the Stage 4 forum (if you haven't done that already).

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  • KBL
    KBL Member Posts: 2,521
    edited June 2020

    Hi, JFL. Yes, I’ve searched. It’s ILC for sure. I know of one person here who had the mets to the odd places, but she stopped writing in here. I know it was spreading for her and she wasn’t doing well. I have a feeling she passed away.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited June 2020

    KBL, your question prompted me to collect some resources and create a thread in the hope that it will make the information and discussions easy to find, add to, and link to. The thread is called 'ILC (Lobular) "Unusual" Mets Sites'.

    https://community.breastcancer.org/forum/8/topics/876844?page=1#idx_1

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  • KBL
    KBL Member Posts: 2,521
    edited June 2020

    Wow, Thank you, ShetlandPony. I will go there right now and add it to my favorites and look up the sites. I appreciate it.

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