Just went from LCIS to ILC this morning

Wicked
Wicked Member Posts: 141
edited August 2016 in ILC (Invasive Lobular Carcinoma)

Had two excisional biopsies for LCIS and a small (1.5mm) area of ILC was found, along with "extensive" LCIS. Surgeon is considered about my "busy" breast tissue. Will have MRI on Friday and then meet with her next week for next steps. Anybody else with ILC and "extensive" LCIS? Surgeon is talking bilateral mastectomy.

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  • nash
    nash Member Posts: 2,600
    edited August 2016

    Yes, I had extensive pleomorphic LCIS left over in my breast after a lumpectomy for a 2.7 cm pleomorphic ILC tumor. I did chemo/rads then had a local recurrence in the lumpectomy scar 8 years later while on Tamoxifen.

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  • leftduetostupidmods
    leftduetostupidmods Member Posts: 620
    edited August 2016

    Yes, the LCIS in my tumor was the most extensive area - but as you can see in my signature my tumor was even more complicated than yours. Initially I was diagnosed with a large (10 cm) area of DCIS (that is what the stereotactic biopsy and breast MRI showed) and I chose bilateral mastectomy, to find after that in the pathology report the whole extent of my BC and the fact that the left breast was getting ready to turn bad too. I never regretted going bilateral. At the time I didn't want to have to deal with this again later down the road.

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  • Lisa123456
    Lisa123456 Member Posts: 56
    edited August 2016

    I'm so sorry to hear this, wicked.

    Do you mind sharing some details: was your LCIS multicentric? If so, was ILC found in one lobule only?

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  • Wicked
    Wicked Member Posts: 141
    edited August 2016

    Hi Lisa! I have bilateral LCIS. They only found the one small area of ILC within it, and only on the left. They also found ADH on the left. The right side is not as bad but still the LCIS is considered extensive.

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  • Lisa123456
    Lisa123456 Member Posts: 56
    edited August 2016

    Have you decided what you are going to do?

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  • leftduetostupidmods
    leftduetostupidmods Member Posts: 620
    edited August 2016

    Ladies, Wicked has enough pressure on her mind as it is, let' s not add to it.

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  • Leslie13
    Leslie13 Member Posts: 202
    edited August 2016

    Hi Wicked,

    I had a large amount of LCIS with smaller ILC likely for years before diagnosis. LCIS is questioned as to whether it's even true cancer. And it's usually slow growing so you should have time to research options. In fact, I'd encourage taking your time to do research and your own soul searching.

    If you have smaller breasts, you may want a BMX to remove all tissue. My observation is that ILC is often larger than imaged, and when you need repeatedly lumpectomies to get clear margins that's when infections happen, and possibilities for good cosmetic results diminish. A BMX leaves you with less worries about recurrence.

    Can't say I love my implants. Deconstruction or fat grafting are things I'm considering on one Foob. I had a very successful nipple sparing BMX, but the pain from my Lymph node disection along with pec muscle animation and scaring are making me question whether having my pec muscle function back will be better.

    You're in the right place for learning about your rarer breast cancer. Make sure your Oncologist knows the difference between Ductal and Lobular breast cancer, or go shopping for one who does. Keep the questions coming and we'll do our best to answer

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  • Wicked
    Wicked Member Posts: 141
    edited August 2016

    Hi Lisa, actually I love your question. So many people are asking me, "Have THEY decided what THEY are going to do yet?" "They" don't get to decide anything! I do. Had the breast MRI on Friday. It was not bad except at different points I wanted to laugh. I always want to laugh during medical procedures. You're always in such ridiculous positions! The surgeon wants to see what my breast landscape looks like. She told me that what she saw of my breast tissue was "ugly," "terrifying," and "gristly." I meet with her again on Friday to talk about what to do. She was concerned about trying to radiate my breast because of how radiation changes breast tissue and mine is already not in great shape. I appreciate people on these boards so much. The knowledge here is unbelievable. I did a lot of research here as soon as I failed the mammogram and I have been able to understand everything the docs are saying to me. Without this place, I would have been so lost.

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  • Damster
    Damster Member Posts: 2
    edited August 2016

    hi all, just went from LCIC TO ILC in a matter of three weeks, mammo, byopsy, needle byopsy, partial mascestomy, and sentinel lymph node (2) removed in 3 weeks. It has been a whirlwind. My question is my doctor is scheduling Rad and HT the margins were clear and the lymph nodes were clear, am I still considered to have cancer

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2016

    Hi Damster and welcome to our community! Sounds like the surgeons were able to get out the cancerous areas, and are taking measures to make sure with radiation and HT to reduce any risks. The question of cancer free would be one for your treatment team, but all sounds very positive from what you say!!

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  • Damster
    Damster Member Posts: 2
    edited August 2016

    thank you it's all so confusing to me. I see my surgeon tomorrow and j want to ask the right questions. Is HT chemo? This is my second go at this I had head and neck oral cancer as well six years ago

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  • Wicked
    Wicked Member Posts: 141
    edited August 2016

    HT is hormone therapy. Stick with this forum and you can get a crash course on all the lingo. It's like speaking another language!


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