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Whats your ILC story?



  • robinblessed54
    robinblessed54 Member Posts: 485
    edited September 2018

    Yes, ILC is covered for BMX and all reconstruction/revisions as long as you live with this. I chose the BMX because my PS said there is a greater risk of recurrence with ILC. I didn't have BC in the right breast, but had pre-cancerous cells which sealed my decision was right. I didn't want to be waiting for the other shoe to drop. Do what you feel is right.


  • meow13
    meow13 Member Posts: 1,363
    edited September 2018

    The only statistic I have seen is one that says at diagnosis those with ILC 33% have cancer in both breasts. Anyone care to post a link to any other statistics I may have missed?

  • lillyishere
    lillyishere Member Posts: 757
    edited July 2020


  • jessie123
    jessie123 Member Posts: 134
    edited August 2020

    It seems to me if that is true most surgeons would recommend BMX for ILC. However, I was given the choice and I don't remember many people on this forum saying their surgeons recommended a BMX because they had lobular. The decision was a very difficult one for me and I did tons of reading before making my decision --- I really didn't find any medical literature recommending one or the other for lobular.

  • momof2winsplus
    momof2winsplus Member Posts: 18
    edited August 2020

    I was 43 and having my second mammogram. The first one said I had dense breasts and to come back in a year. I had no symptoms, no lump. My mammogram showed some calcifications. When radiologist zoomed i, there was a slight shadow. After ultrasound and biopsy, ILC was confirmed. They thought it was only 1.4 cm and that my nodes were clear. MRI showed 5 small masses. But after DMX, they found 3.4 cm mass with lymphovascular invasion and 2 lymph nodes positive with extracapsular extension. None of my doctors could feel anything on exams even when they knew where the mass was. It was just luck that they found it instead of waiting another year. My treatment plan was based on Oncotype number which has not been validated for ILC or for premenopausal node-positive women. We need more research to find proper treatments for ILC instead of just assuming it will respond as IDC.

  • InfusionConfusion
    InfusionConfusion Member Posts: 5
    edited August 2020

    I was diagnosed May last year after I had symptoms of a 'thickening' on my left breast and some pain. At first it was missed in every test - mammogram, ultrasound and physical examination. The doctor was a bit inexperienced and just thought I had lumpy breasts as I had no family history, etc. I was advised to get an MRI but convinced myself I was just over worrying. 10 months later, it seemed to grow and the pain got worse. I just wanted to know what it was because I could feel it was something. I got the MRI and it turned out to be lobular carcinoma, around 10cm and in a few lymph nodes! The sneaky lobular cancer had hidden in my dense breasts and everyone missed it. Once it was confirmed by biopsy and as I was 43, I got everything thrown at me - chemo, targeted therapy, radiation, double mastectomy and hormone therapy. I've just finished the bulk of it but will be on tamoxifen for a while. I wish I could let more women know that they need to get MRI if they feel symptoms (anything different) and are told they have dense breasts. If I hadn't gone back, I dread to think of the outcome.

  • mavericksmom
    mavericksmom Member Posts: 997
    edited August 2020

    I had IDC , lumpectomy, re-excision, chemo and radiation (24 nodes removed due to failed SNB, all neg) in 2003.

    I refused Tamoxifen or AI

    I thought I would never get breast cancer again, largely because I was told so many times that it comes back in the first five years, rarely after that. NOW, I know that is completely wrong, but I was told that by doctors!

    Then after a long fall of seeing specialists for multiple other health issues, I ended the year with a diagnostic mammogram due to pain in left breast. (I might add, I was ALWAYS told pain is NOT a symptom of breast cancer. Also, WRONG! ) Nothing showed up on the mammogram but they did an US and it showed up on that. A new ILC in the same breast.

    Biopsy in 11/2018, left mastectomy 01/2019 with DIEP reconstruction. I tried AI for 6 months and it raised my cholesterol significantly. I wasn't in agreement that lessening estrogen is a good thing for all post-menopausal women with breast cancer, so I quit and my only regret is that I ever took it in the first place.

    As for BMX, I wanted that but was refused. I was told the cancer hospital I went to has a policy of not removing a healthy breast unless the patient is BRCA + ! At first I was angry. Now I see it as "water over the dam," and I put it behind me.

    Then the other "Big C" aka Covid 19, came and for me, breast cancer is no longer what I worry about.

  • springdaisy
    springdaisy Member Posts: 68
    edited October 2020