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Multicentric ILC



I am new to this site but hope to find support with others who have my condition. When I was first diagnosed with BC, I was optimistic based on the initial results, namely very early stage because of the tumor size. However, as I proceeded with additional testing - biopsy and MRI - the diagnosis just kept getting worse. I now was faced with a rarer ILC cancer and on top of that, multicentric.

I wonder if there are others out there who could give me some insight or an inspirational boost because as of now, I'm a 53 yr old female feeling scared. A few months ago, I thought I was healthy and now everything has and will change. I was accepting that I could have cancer but now knowing I face higher risks because of the type and multiply locations, I just feel hopeless.

Are there others out there who have faced this double whammy?


  • mandy23
    mandy23 Member Posts: 113

    Hi @feelingscared11

    Welcome to the boards! Sorry you have to be here, but so glad that you have found us.

    Take a deep breath. I don't know your exact situation, but my guess is that you still have a very treatable bc. It would be helpful if you can put the information about your dx in your profile, so you can get more directed responses.

    I know the feeling about how things start out and then get worse…. 😮

    My 1st dx in 2003 started as DCIS. It started as a lumpectomy and then was determined it was too widespread, so I needed a mastectomy. After the surgery they found it was invasive and 2 very small ILC tumors. I was 47 at the time, so also had an oophorectomy to put me into menopause. I was fortunate to not have to have chemo and went on Letrozole (Femara) . I am still here today, doing fine…..even though I got a bonus adventure when bc (IDC this time) showed up in the other breast in 2022. Did my treatments for that (including chemo this time) and I am fine, as far as I know.

    It's scary for sure, but take things one step at a time and you will very likely do fine!

    I've always considered myself healthy also and still do—you probably are too….it's just this darn cancer thing!

    Take care and keep posting here for support!

  • lillyishere
    lillyishere Member Posts: 776
    edited June 25

    @feelingscared11, I'm sorry to hear that you’re joining us under these circumstances. On the other hand, please know that we are here to help you with any questions or concerns you may have, and to share our own experiences if you find them helpful.

    The good news is that Invasive Lobular Carcinoma (ILC) is typically very slow-growing and is often hormone-positive, which means there are effective treatments available. The bad news is that it can be sneaky and is often difficult to detect through scans.

    I was diagnosed almost five years ago, and like you, I was very fit and on the younger side. There was no history of breast cancer in my family, so it was quite a shock to me. I opted to pay for genetic testing, covering all 84 genes, which came back negative. Despite this, I felt it was important to have the test done, especially since I have two daughters, one of whom was only 11 years old when I was diagnosed.

    Initial scans showed a small cancer with negative nodes, but I was terrified and chose to have both breasts removed. During surgery, additional ILC was found in areas that scans hadn’t detected, and I had two positive nodes. I’m sharing this in case it might help you understand what to expect with ILC.

    I've been on anti-hormonal treatments for 4.5 years now. Since I had positive nodes, I’m not sure how long I’ll continue with the medication. However, this journey has taught me to see life from a different perspective, to enjoy time with loved ones more, to travel whenever possible, and to avoid letting myself dwell in dark places.

    I know this is a difficult time for you, but once you have a treatment plan, things will start to feel more manageable. Please don’t hesitate to reach out if you have any questions.

    Sending you hugs! Breast cancer is treatable nowadays, and we're here to support you.