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ILC (Lobular) “Unusual” Mets Sites

ShetlandPony Member Posts: 3,063

I have compiled a list of BCO threads, journal articles, and other resources that I hope may help those with "weird ILC mets" to find information.

BCO members, please add any resources you have found about weird ILC mets.

ILC sometimes spreads to "the gastrointestinal tract, genitourinary tract, peritoneum, retroperitoneum, and leptomeninges in addition to common visceral sites such as the liver, bone, and lung. Knowledge of these unusual metastatic manifestations and disease patterns may aid in differentiating distant metastatic disease from secondary primary cancers and help plan appropriate therapy." (From the second journal article linked below.)


Possibly relevant stage iv threads from the past two years (searches done June 2020):

Bile duct

Small Intestine




HIPEC procedure

Lobular Sucks!

Leptomeningeal metastasis


Lobular Breast Cancer Alliance

(Thanks to Bestbird for the next two.)

The Insider's Guide to Metastatic Breast Cancer


Thanks to the BCO member who sent me these. I am unsure whether she would like to be credited. (Thank you so much. You know who you are. Please PM me if I may credit you.)

Distant Metastatic Disease Manifestations in Infiltrating Lobular Carcinoma of the Breast

Imaging of metastases from breast cancer to uncommon sites

Lobular Breast Cancer Metastasis to the Colon,

the Appendix and the Gallbladder

Metastatic colonic and gastric polyps from breast cancer resembling hyperplastic polyps

(Thank you to Bestbird for this one):

Leptomeningeal metastases in breast cancer


  • vlnrph
    vlnrph Member Posts: 487

    Nice job Shetland. I did not click thru every link but can tell that you took the time to compile a fairly comprehensive list!

    While my mets seemed to be derived from the ductal lesion (non-papable and too high up in the armpit to show on mammogram: it was found by MRI during work up for my original breast tumor which was lobular) I like to keep my ear to the ground regarding that unique pathology...

  • jodyj
    jodyj Member Posts: 55

    ShetlandPony, thank you so much for putting this new thread together! It's very helpful the way you've categorized topics. I don't know the cause of my recent episodes of upper GI blockage, but I've decided to let go of some of the anxiety for now. I'll check out these resources in the meantime.

  • Rosiesmum
    Rosiesmum Member Posts: 3

    Thank you so much for the resources! I just sent them to my oncologist. ILC was my second malignant breast cancer and I’m having Some blood with the frequent diarrhea today. Will share with GI doc, too, for an appointment later this month.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    Rosiesmum, you're welcome, and I hope there is a non-cancer explanation for you.

  • ninaca
    ninaca Member Posts: 228

    JodyJ- I just read that you have some sort of intestinal blockage- I had resection surgery 19 months ago when a lobular tumor wrapped itself around the outside of my ileal (small intestine) and was causing a blockage. The only way they found it was with exploratory surgery because my CT showed a thickening in the area. GI upsets had been going on for a year before I finally found a diagnosis and relief- amazing I was able to eat everything again.

  • ninaca
    ninaca Member Posts: 228

    To add to your list Sheltland Pony- for rectal, colon, and intestinal ILC Mets I compiled after looking at sites that referenced these.

    8. López Deogracias M, Flores Jaime L, Arias-Camisón I, et al. Rectal metastasis from lobular breast carcinoma 15 years after primary diagnosis. Clin Transl Oncol. 2010;12:150–153. [PubMed] []

    9. Bustamante-Balen M, Navarro-Hervas M, Cuevas JM, Garcia-Diez JV. [Colon metastasis of a lobular breast carcinoma] Rev Esp Enferm Dig. 2008;100:249–250. [PubMed] [

    2. Bamias A, Baltayiannis G, Kamina S. Rectal metastases from lobular carcinoma of the breast: Report of a case and literature review. Ann Oncol. 2001;12:715–718. [PubMed] []

    Intestinal metastasis from breast cancer: Presentation, treatment and survival from a systematic literature review

    Elena Bolzacchini 1 , Olga Nigro 2 , Davide Inversini 3 , Monica Giordano 4 , Giovanni Maconi 5

  • maryland
    maryland Member Posts: 1,047

    Hi all, I was dx with ILC back in 2014, stage 3C, spent a couple of years on and then moved on and away from my computer and on with my life. In early 2020 I was dx with extensive bone mets, pretty much everywhere but skull. I've been doing well with Ibrance, faslodex and Xgeva. In the past 4 months I've lost about 35 pounds, I was/am thrilled about it and mostly attributed it to working all day in my backyard with a big project I've been doing by myself. Now I'm at my goal weight and finding I still don't really find food to be very appealing and have to work to remind myself to eat so as not to lose any more weight. I mentioned all this to my MO and she ordered a PET/CT. Long story short results show.

    "development of a cluster of hypermetabolic mesenteric nodes within the right lower abdomen, adjacent to the right ureter, concerning for metastatic disease."

    My MO is scheduling a laparoscopic biopsy to see what we're dealing with. Also My CA 27.29 and CEA have been slowly creeping up over the last year from normal range to 94.1 and 7.9. which is the highest they've ever been. I haven't had a chance to go back and read everything on this thread but I intend to. I came here because I can find almost no info on BC mets to mesentery, and very little about mets to GI except that on the rare occasional it's just about exclusively ILC. Anyway just getting started, figuring they'll set the biopsy for next week and I'll let you know the results. I got so much help back in 2014 I decided it's time to come back and this looked like a good thread for it. Any input or knowledge is greatly appreciated, I like to understand what I'm dealing with.

  • nkb
    nkb Member Posts: 1,561

    Hi Maryland! I don't have odd mets yet- although I have friends who have had them. try the website peritoneal carcinomatosis- it is somewhat active.

    there are also many listed above by Shetland pony who is no longer with us- but, had many interesting posts you could research - lots of good info there

  • maryland
    maryland Member Posts: 1,047

    Thanks nkb, I will check out that thread. I’m sorry to hear about Shetland Pony, I remember her from my time here the first 2 years.

  • ninaca
    ninaca Member Posts: 228

    Hi Maryland, How did the exploratory surgery go? I wrote above about my exploratory surgery in Dec. 2019 where they took out a piece of my ilium, part of small intestine, because ILC tumors were wrapped around it and was squeezing it closed. After surgery I was ecstatic that I could eat again and enjoy food. Did not show up on scans or markers for a long time, finally "thickening of the walls" on a CT, second time, got their attention. It has since been found in my peritoneal area 10 months ago but has not been active for several months per last 3 PET scans. Taxol stopped it, for the moment. Hope you are doing well with new diagnosis and treatment.