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ILC removed but "extensive" LCIS found

devoinaz Member Posts: 40

I'm new here, 50 y.o. Just recovering now from lumpectomy and SLNB (8 nodes!) for ILC (ER+, PR+, HER2-, grade 2). My pathology report had clean ILC margins and found only a few single isolated tumor cells in one of the nodes, so that was good news. But my tumor was much larger than the doctors expected from prior imaging (2.4cm in the largest dimension versus around 1cm) and they also reported "extensive" LCIS and ALH throughout the excised tissue (which was a large chunk - more than 4 cm on two sides). They did not take out all of the LCIS, nor did they try.

I'm on letrozole already and I was scheduled for radiation therapy next (and possible chemo, depending on Oncotype score, which is still pending), but I'm now considering going back to surgery for a full bilateral mastectomy.

It's highly likely that I have LCIS and ALH throughout both breasts, so it feels like it's only a matter of time until another LCIS area breaks out of its lobule and becomes ILC. And my breast tissue is "extremely dense", so the imaging doesn't work all that well. The only reason my ILC was found at all was that I had a contrast mammogram, based on some family history and a proactive radiologist who suggested it.

I've been binge-reading about LCIS and future cancer risk, and the data are not super-clear. I spoke briefly already with my surgeon, who agreed that I'm not crazy to be considering this, but also said that LCIS is viewed as a marker for elevated risk, and they don't necessarily recommend additional surgery for someone with my stats.

I'm going to be meeting with a lot of doctors over the next month or so to make this decision, but I'm leaning toward requesting the surgery. I would go flat - no reconstruction - and my surgeon said that it is less complicated and an easier recovery that way. I'd honestly rather not deal with bras, anyway, so that would be an added plus for me.

I'm curious to hear what folks in this community think, and whether anyone faced this decision and how they made it. Thanks in advance for sharing whatever experience/advice you can!


  • krose53
    krose53 Member Posts: 74

    I had ILC IDC LCIS and DCIS Originally they found the ILC by mammogramand I was planning on a lumpectomy Then I had and MRI where they found IDC in the opposite breast After my bilateral Mastectomy, they found another IDC and LCIS and DCIS . So for me I'd err on the side of caution I also had very dense breasts Wishing you the best of luck onthe journey no one really wants to be on

  • devoinaz
    devoinaz Member Posts: 40

    Thanks so much for sharing, krose53! I really appreciate it!

  • kaynotrealname
    kaynotrealname Member Posts: 366

    I didn't have ILC but I had IDC and what they thought was DCIS but ended up just being a much larger IDC than thought. At any rate I had decided initially to have a double mastectomy and it's not a decision I even remotely regret. Like you I had dense breasts and a family history of ovarian cancer and once my breast cancer was found I just didn't want anything to do with my natural breasts anymore. I thought it just a matter of time before they made something else nasty and didn't want to deal with additional stress of active monitoring afterwards. They found other things in my breasts with the double mastectomies that IMO suggested I was right to think they were just going to be ticking bombs for the rest of my life if I kept them but even they hadn't I still wouldn't have regretted my decision. I never have to get another mammogram nor anything else that comes along with it (further biopsies because of my "busy" breasts I'm sure). That was worth quite a bit to me. So it just depends on what risk and surveillance you are comfortable with. I wanted as little risk as possible with as little surveillance as possible and the double mastectomy was my best bet as a result.

    BTW I found the surgery quite easy. Healing has been a breeze. In a couple of weeks I'm going in for a DIEP and that probably will be much worse but truly the double mastectomy wasn't nearly as big a deal as I thought.

  • lillyishere
    lillyishere Member Posts: 770

    I was diagnosed with ILC. Luckily, a very skilled radiologist read my extremely dense mammogram and got suspicious about some tinny new calcifications. The biopsy showed ILC. MRI showed a very small ILC and negative nodes. I was recommended for lumpectomy and radiation but I asked for DMX. Well, the pathology showed, ILC where biopsy pointed, LCIS both breasts and 2 nodes positive. No family history and 84 genes are negative for BC. My suggestion is to remove both breasts and don't have any regrets because ILC is sneaky and most of the time doesn't show on scans. You will also avoid the future mamograms and anxeties that come with it.

  • sarahnh
    sarahnh Member Posts: 105

    devoinaz I had a similar experience - dense breasts, IDC/ILC/DCIS/LCIS, lumpectomy with SLNB (only 7 nodes haha). There was some possible DCIS near the surgical margin, and my post-surgery mammogram showed more suspicious calcifications. For those and other reasons I decided to have a bilateral mastectomy.

    It was a painful decision! But I am so happy I did it. It turns out both breasts were full of LCIS (and other stuff) which left me at higher risk for a second cancer, and would have required ongoing biopsies and other surveillance. I chose to go flat (technically "aesthetic flat closure"). It was an easy surgery and recovery, I am happy with the result, and yes it is great not worrying about bras!

    I think you are doing the right thing by meeting with multiple doctors. Best of luck with your decision!

  • devoinaz
    devoinaz Member Posts: 40

    Thanks so much to all of you for sharing your stories! I spoke with a friend who happens to also be a breast cancer doctor (she advises women who are at high risk), and she agreed that the surgery is a totally reasonable plan for me. My journey started out seeming like it was going to be small and straightforward, but there were a couple of weird things that happened even before my surgery that freaked me out (the biggest one was that they found an extra-dense spot on my femur bone when they did the bone density dexa scan, and I needed an xray and CT scan before they decided it was not cancer). So, I've already gone through some extra scans and stress, and it would be great to avoid more.

    I am now thinking that I'm going to do it, and I'm super happy to hear from both sarahnh and kaynotrealname that you found the surgery easy to recover from. I just hope I have the same experience! I'll still talk with all the doctors about it and listen to what they say, but I don't think they will change my mind.