ILC: Double Mastectomy positive margins complete breast tissue removed

[ba5083]

My wife was diagnosed with Invasive Lobular Carcinoma in April. HR/PR positive (95%) Ki67-12%, HER2 1+ Negative. Oncotype test indicated or confirmed IV chemo would not be effect based of her ILC composition. Due to the size of the tumors she was put on Ibrance and Letrozole to help shrink the tumors prior to surgery. All other scans (full body, brain and bone) came back good. It also appeared after comparing a breast MRI in June and a 2nd MRI in September that the treatments helped shrink the tumors . We met with the surgeon yesterday and went over the pathology report. On 1 side she had 8 lymph nodes removed...4 Macrometastases to other 4 were good. What concerns me the most she did not get clean margins in the upper outer quadrant and less than 1mm margin in lower inner quadrant. Any one have experience with getting positive margins after a double mastectomy having ILC? If so can you please share your experience and what we might expect? How your treatment continued...etc. We are setting a meet with the ONC within the next business day or two. Thanks so much for your comment in advance

[Bettybuckets]

it was a long time ago but in my double mastectomy I had pos lymph nodes with I think extra encapsulation… and with ILC in right breast and hyperpalsia in the other. All that meant high risk so I had 10+ years of anti estrogen tx with Tam then letrozole. I tried to get my ovaries out since estrogen was driving this bus but the surgeons I picked had a weird idea that would lead to higher risk of i Parkinson’s later in life. Fast forward and like a lot of people with ILC, I had a slow growing cancer and found MBC in 2020. And even though I am 62, I have a surgical consult to consider taking ovaries out. Chemo all those years ago pushed me into menopause at 44… and years later after a long rest they came back to life. If everything remains stable in my next scan, they may take out my ovaries. If scan shows progression, I don’t think they will bother. The point of my story is to remain vigilant in the years post mastectomy and do all trh years of tam/ AI to keep this thing at bay. Hope that was helpful.

[ba5083 in reply to Bettybuckets]

Thanks so much for sharing your experiences. Onc seemed a bit worried about the 4 nodes and the fact that pathology report was markedly different that the ultrasounds and breast MRIs. Scans were ordered again with the last being done in April. Seems ILC is very difficult to get accurate test results. My wife is 57.

[Bettybuckets in reply to ba5083]

that must be so worrying. I was only 44 when I had my big sugery… and it returned 16 years later. I hope your wife never sees it return but I know that is the elephant in the room. The best thing you can both do is to try to forget about it after treatment and get on with living the happiest life you can making memories with those you love.

[Hazelgreen]

Assuming that your wife does not have metastatic breast cancer, you may find useful responses to your post from the other Health Unlocked sites for breast cancer: My Breast Cancer Community,and one other whose name I've forgotten.

It has been years since most of us on this site had to be concerned with margins.

Best wishes, Cindy

P.S. The other site is called Breast Cancer Support

[ba5083 in reply to Hazelgreen]

Thanks… due to the pathology results being so different from breast MRIs and positive margins scans were ordered for the second time since April to find out

[Eliactida1955]

I have stage 4 breast cancer with met to bone. I never had surgery radiation or chemo. My therapy was I brance and letrozole for over three years and all I can say is that it shrank the tumors initially where the scans said they weren’t visible. Of course now it’s a different story and the med stopped working . It’s a good treatment to accomplish what you want to do-so I wish that it works the best for you.🙏

[PJBinMI]

I was diagnosed with lobular bc E+, her2neu -, the month of my 58th birthday, in 2004, over 18 years ago. I never had clear margins from two, about five years apart, partial mastectomies of the right breast. I wasn't diagnosed until stage IV, already extensive bone mets. If your wife's cancer is considered less than stage IV, she has alot going for her! Her age is a plus. She's probably post menopause, which suggests the cancer isn't particularly aggressive. One suggestion I have is that she get a second opinion at a medical school affiliated cancer center, from a bc specialist onc. If you are in the US, the top tier cancer centers are those that have been designated "Comprehensive Cancer Centers" by the National Cancer Institute and listed on their website.

[ba5083 in reply to PJBinMI]

PJ,

Thanks so much for sharing your experience. She was originally diagnosed as a Stage 2 but that was based off biopsies, MRIs and CT scans. From the pathology results from the double mastectomy we have gotten markedly different results particularly on the left side. Last Breast MRI in September showed significant decrease enhancement indicating Ibrance/Letrozol combination was working with 1 possibly 2 positive lymph nodes on her left side. Pathology report from surgery showed 4 lymph nodes with no evidence the Ibrance/letrozol combo was working. I can only assume this along with positive margins is the reason for the additional scan (although last scans were done 3 months ago). However the right side showed in both the MRI and Pathology report that the meds had been working. ONC is retesting surgical tissue to see if we are dealing with a different ILC structure (ER/PR, HER2, Ki-67) on the left side than what was found/tested/reported during the initial biopsy of the left breast and 1 left lymph node in April. Surgical pathology report shows LCIS was present but initial pathology reports did not. Initially he wanted to treat with Verzenio/letrozol butinsurance denied the Verzenio due to low Ki-67 findings.

[Goldenday4]

Hi. I started on this journey on July 1, 2022. I had a double mastectomy on 8/17/22 and the tumor was so large, 4.5 cm, attached to the chest wall. After they removed it, there were still positive margins on the chest wall with 4 out of 5 lymph nodes positive for cancer. They then wanted to remove 22 lymph nodes, but before that happened they did a PET scan and found that it had already spread to a lymph node behind my heart. Removing the lymph nodes that that stage would do no good since it was now metastatic breast cancer. They want to do hormone therapy instead. I haven't started yet, since I just received the diagnoses only 3 days ago. I have heard positive and negative remarks about the letrozole/Ibrance combo.

[ba5083 in reply to Goldenday4]

Thanks so much for sharing your experience. Wow 4.5 cm, from my accounts that is large. Based off pathology reports it indicates we got some benefit from letrozole/ibrance combo but only on 1 side (right side). The pathology report states no benefit from that combo on the left. Our ONC indicated - depending on the results of the scan after Thanksgiving - my wife will be moved to Tamoxifen/Verzenio combination. Do you know if the make up on your tumor was Invasive Lobular Cancer?