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IDC turned out to be ILC after surgery - confused

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cheftoast
cheftoast Member Posts: 24

I'm new here, two weeks post-surgery, 47 years old, and confused about a change in diagnosis after surgery

My original DX in December was 2.1cm stage 2 IDC + DCIS in the left breast. I had a tumor biopsy and a lymph node biopsy on the left, an MRI on both sides, and an MRI-guided biopsy for a lump on the right (that turned out to be a benign papilloma).

Two weeks ago I had oncoplastic surgery, and I'm pleased with the results. I had a reduction + lift, and the option allowed my surgeon to remove generous tissue. The path came back great, with clean margins all around -- the DCIS and the tumor are gone. My sentinel nodes were also clear. However, at my follow-up earlier this week, I learned that the IDC was actually ILC. And both breasts have LCIS. I did also have DCIS, but that's gone. The surgeon said ILC and LCIS put me at higher risk than IDC/DCIS, and now I am kind of freaking out.

All my research suggests that ILC is a wily bastard and very hard to see on imaging. I had a 2cm tumor that got biopsied. How did it come back as IDC and not ILC? Is this just how it is sometimes? Did someone miss something? Like so many of us, I've had to become a junior scientist since DX and am really grateful for any insight.

The surgeon's plan is radiation, then the endocrine therapy will be "really important" for the LCIS. I feel like I'm walking around with ticking time bombs on my still-healing chest. Thank you!

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  • alicebastable
    alicebastable Member Posts: 1,945
    edited March 2022
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    My biopsy showed IDC and ILC mixed. Surgical pathology showed just ILC. All I can figure is that my IDC was really tiny and got completely removed with the biopsy tissue, leaving work nly ILC.

  • lillyishere
    lillyishere Member Posts: 773
    edited March 2022
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    Alicebastable, do you take any Aromatase inhibitor as daily medication?

  • alicebastable
    alicebastable Member Posts: 1,945
    edited March 2022
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    lillyishere, I'm not taking anything. My MO agreed I shouldn't do an AI due to ongoing dental work and bone issues. I took Tamoxifen for several months but developed a fatty liver - don't know if it was cause/effect or coincidence, but I found research papers saying Tamoxifen and a fatty liver is a bad combination.

  • cheftoast
    cheftoast Member Posts: 24
    edited March 2022
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    Thanks, alicebastable. I feel a bit blindsided that the original biopsy didn't catch this. Maybe I will call my surgeon on Monday and see if she can clarify how this works. It's confusing how all these things can go together.

  • lillyishere
    lillyishere Member Posts: 773
    edited March 2022
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    cheftoast, hormone therapy (more exact anti-hormone therapy) will help with ILC, LCIS at the same time. Were they able to remove all ILC and LCIS with surgery?

  • cheftoast
    cheftoast Member Posts: 24
    edited March 2022
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    That is great to hear, lillyishere. They got out all the ILC (and the DCIS). The LCIS is still hanging out in both breasts. The surgeon said, see, we don't know if the cancer she removed was "the cancer" that goes with the LCIS, or if more could be on the way someday. Did you have LCIS too? She said it's not actual cancer and won't turn into anything. It just indicates something might happen (if this wasn't "it").

    I tend to get side effects from most meds so I am worried about the hormonal therapy. Were you premenopausal when you went on the letrozole? It seems like it's more effective than tamoxifen for ILC, but my periods tick along like clockwork so I'll have to wait.

  • beach2beach
    beach2beach Member Posts: 245
    edited March 2022
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    When I was diagnosed after biopsy I was told IDC. After surgery my pathology came back DCIS, LCIS and ILC. It was a 9mm tumor. I guess if there was IDC then that happened to be what they sampled at the biopsy time and it was gone. I had chosen from the start for a mastectomy and since I'm still peri-menopausal at 55!!!!...I;m taking Tamoxifen.

  • lillyishere
    lillyishere Member Posts: 773
    edited March 2022
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    cheftoast, most of the time if there is ILC doctors find LCIS as well. LCIS is called Stage 0 that can turn invasive or not. In my case, as in most cases, other than small ILC, LCIS was found in both breasts. A small 3mm ILC had spread to lymph nodes. It is sneaky cancer. I was recommended lumpectomy but I decided on BMX when the pathology report found plenty of LCIS in both breasts.

    I was premenopausal that I couldn't take tamoxifen because of my Mom's predisposition of blood clots. I removed the ovaries and started letrozole. After two years, I took a month's break from letrozole and tomorrow, I will start Aromasin. If you can handle letrozole, it is the best AI for ILC.

  • cheftoast
    cheftoast Member Posts: 24
    edited March 2022
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    Thank you, lillyishere. My BS said that LCIS would probably just hang out doing nothing, there was a very small chance it would invade. She made it sound really different from DCIS -- like LCIS just hangs out in cancer-friendly breasts without being cancer itself. Now that I know I still have it in both breasts, and hearing all your stories, I am panicking some.

    How did you decide to have your ovaries removed? I know it's probably old news to you now, but you sound so casual about it! I am still in the "I thought my situation was clear-cut and now it seems really messy" crying/PTSD mess. I can't picture trusting future imaging. And I'm still healing from surgery. I have a message in to my BS but she usually takes a day or so to call back.

  • lillyishere
    lillyishere Member Posts: 773
    edited March 2022
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    cheftoas, I was recommended to have letrozole and in order to take this medication, you need to be menopausal. Since I wasn't menopausal, I was getting Lupron injections every month to shut down the ovaries. After 4 months of Lupron injections, I asked to have my ovaries removed in order to continue with letrozole alone. I had to think what is the best way to deal with this. For me, removing the organs I didn't need was a better solution than taking medications that had severe side effects. I don't regret asking to have both breasts removed, they were cancer factories, and to have ovaries removed since I was done having kids. I don't need follow-up mammograms anymore or have monthly Lupron injections that were a nightmare for me. It was my choice and worked for me but everybody is different.