ILC and now LCIS

Staceybee

I have an ILC diagnosis with lumpectomy scheduled - but just had another biopsy on a group of nearby calcifications that were being called benign based on the mammo but I just heard they are LCIS. The pathologist said it is not cancer but it sure sounds like cancer to me especially because it is so close to the ILC mass. Does not seem to be a coincidence.Taking this out too as part of the lumpectomy seems like a lot of tissue, wondering if still the right thing to do or just go full mastectomy and reduce the risk? Anyone have a similar situation? What did you decide? Thank you in advance for any advice!

Georgia1

Hi Stacybee. I was in the exact same situation. LCIS indeed is NOT cancer. Are you ER+? If so, once you get the lumpectomy and start taking Tamoxifen, or an AI, you are all set. The anti-estrogen will starve any future cancer cells that do pop up (on their own or "evolving" from the LCIS) of the estrogen they need to survive. Thus all the studies that show lumpectomy + radiation presents no higher risk than masectomy.

This is probably not the correct scientific terminology (smile), but it's essentially what I was told by two great breast cancer centers. Hope that helps.

SCLDO

Hello Staceybee,

My diagnosis was opposite of yours. I had LCIS about 6 years ago in my right breast, had the calcification removed and took tamoxifen for 5 years. This January I found a lump in my left breast, had a biopsy and it was ILC. The follow-on MRI found more suspicious areas so because of my previous involvement in my right breast and the MRI results I have chosen to have a double masectomy (next Friday) with reconstructive surgery. Unfortunately it seems the tamoxifen didn't do a good enough job as Georgia1 stated it should. Of course 6 years ago I had hoped I would not be in this situation...and I certainly don't want to make you nervous...but I believe these forums are here to get all the information you can even though all of our cases are different...but still related! Hope everything works out for you!

Georgia1

SCLDO, I'm so sorry you had a recurrence. I'm just posting to agree that anti-estrogen therapy is not 100 percent effective; I should have noted that in my previous post. In my case I am 95 percent ER+ and a genetic test showed I am a "normal metabolizer" of Tamoxifen. Unfortunately that is not true for all so asking a lot of questions is always smart.

Hope all goes well for you.

edwards750

I am sorry for the recurrence too. Unfortunately for all of us there are no guarantees no matter what the stage or grade. Early stage, less aggressive tumor, a low grade and low Oncotype score can provide some optimism at least that’s what I’m counting on. God willing I will be 7 years out this August.

My sister has ILC and her’s came back after 4 years near her MX scar. It’s confined to that area thank goodness. She took Arimidex. Not trying to scare anyone either because none of us need any help in that area. She had a MX but no treatment. Her Oncotype score was intermediate.

I have my annual mammogram scheduled for next Friday. Let the anxiety begin.

Dian

Staceybee

Thank you so much for the responses - so helpful to hear. My surgeon said she will likely take the LCIS out with the lumpectomy but it may require a second incision. I told her to PLEASE take everything out - I don’t care about extra incisions, I’ll take them. She said also said that if LCIS showed up in the margins around the cancer mass they would consider that clear margins and not go back in. That would make me very nervous. I am still at the beginning so not sure of how receptive I will be to hormone therapy - does this come post-surgery when you meet with the oncologist? I just looked at my biopsy report and it says ER+ 76-100 percentage staining and strong. I am also sorry to hear about the recurrence and hoping all goes smoothly with the surgery. Thank you again

Georgia1

Hi Stacybee. Yes, you would discuss anti-hormone therapy with your medical oncologist after surgery. As Edwards750 said you have really good odds plus it sounds like you also have a surgeon who you relate to - that's terrific. We are here to help when you need us.

rockymountaingirl

I had a somewhat similar situation involving IDC. After the lumpectomy for the IDC, pathology found several small spots of DCIS nearby. One of them was right on the edge of the "lump" that was removed, so the surgeon recommended further surgery to get a clean margin on that bit of DCIS, and that was done. I understand that DCIS and LCIS are regarded as "stage 0" cancer, and not life-threatening, but I was happy to get rid of the DCIS anyway. Who needs one more thing to worry about?

MelissaDallas

LCIS is not regarded as Stage 0 cancer like DCIS is and is not treated as such It is just considered an indicator that you may be at a greater risk of developing cancer in the future.