Pleomorphic invasive lobular carcinoma

Hv2Cutedimples
Hv2Cutedimples Member Posts: 7
edited July 2019 in ILC (Invasive Lobular Carcinoma)

I was given a diagnosis yesterday. I am 43 with three children. I had a right breast lump that was biopsies in 2018 and told benign. Excisional biopsy was performed and I was nervous but eventually forgot I had the lump. Until a year and a half later when it returned and much larger, and in the same spot. This time biopsy revealed ILC with Pleomorphic features. I’m not sure if this means i have this subtype but I’m thinking so. I am still waiting on the full path report. Meeting the surgeon next week. Worried about the possible spread of this particular subtype of ILC. Anyone out there with this subtype? will they likely do node testing before mastectomy? I had no findings on MRI that suggested the nodes were affected, however I am tender and sore on the chest and up into the armpit on the same side so I’m worried.


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  • nash
    nash Member Posts: 2,600
    edited June 2019

    I have PILC. Nodes are usually tested during the mx surgery. The surgeon will manually exam the nodes when you see her/him next week.

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  • Hv2Cutedimples
    Hv2Cutedimples Member Posts: 7
    edited June 2019

    thank you!

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  • OnTarget
    OnTarget Member Posts: 447
    edited June 2019

    My original diagnosis from my biopsy on the left side was mammary cancer, with features of IDC and ILC. My surgical diagnosis was ILC with pleomorphic features. I'm not sure if "pleomorphic features" is the same as PILC or not. I'm 42. My oncologist said that it wouldn't change my treatment, but I suppose it does factor into the grading. My tumor was grade 2 (and my pleomorphic score was 2 of 3).

    They did an ultrasound to get a look at my nodes, and a breast MRI too. My nodes looked clear, so I had 2 sentinel nodes on each side removed during surgery. Both sides had cancer, thus both sides had SLNB's done.

    Some hospitals do pathology of the sentinel nodes during surgery, but mine doesn't. A week after my surgery, I got all of my pathology results.

    ILC often happens in both breasts, and I was so lucky that they caught my tiny ILC in the right side during my breast MRI that they were doing for the left side. Otherwise I may have only gotten the left side removed and then had to go through it all again on the other side.

    For me, the mastectomy wasn't nearly as bad as I expected. Hopefully your experiences are similar!

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  • Hv2Cutedimples
    Hv2Cutedimples Member Posts: 7
    edited June 2019

    thank you! We have a lot of similarities. My surgeon is giving me the option of lumpectomy or mastectomy. He doesn’t think I need to do radical surgery but I’m leaning towards the double. He’s ordered bone scans and CT of chest, abdomen, and pelvis. My brain has been very cloudy since dx. Appreciate your support

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  • Atl1967
    Atl1967 Member Posts: 7
    edited July 2019

    Hey! I was diagnosed with pleomorphic ILC. I spent a lot of time trying to figure out how important the "pleomorphic" designation was, and did a fair bit of research. My conclusion after talking to my doctor (I am NOT one!) is that your treatment plan will be driven more by the other features - hormone receptivity, the HER2 test, the presence in the nodes, the results of the Oncotype if you get that. For example, ILC can be smaller than ductal, and having a breast MRI was critical for me to find a second, much smaller spot. I was given the option of lumpectomy or mastectomy and chose lumpectomy. All decisions are good if they are what's right for you. Good luck in your journey and if there's anything this forum can do to clear up any confusion, post again - I've found it to be very helpful.

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  • cathmg45
    cathmg45 Member Posts: 12
    edited July 2019

    Hi Cute dimples,

    Tomorrow is my 12th year since diagnosis at age 43 with PILC. I'm feeling reflective today, so usually I sometimes will go on this site to check in. I had a bilateral mastectomy, and chemo back in 2008. I took tamoxifen for a couple of years til I couldn't stand the side effects. A lot of living has gone on in the past twelve years-I feel great and expect to be around for a good long time. I wish the same for you.

    Catherine

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