I have LCIS, anyone else?

4/23/24 First lumpectomy to remove PLCIS, they found a grade 1 invasive lobular carcinoma in the center and it was all removed but the surgery couldn't get clear margins. 3 things that I could do. 1) 20 min surgery to get a lymph node. 2) Lymph node and clear margins. 3. Mastectomy. Then 5/10/24 I ended up with Hematoma surgery from a popped stitch. (Don't sneeze) They got a lymph node (and it was neg.) Still no clear margins of PLCIS. 7/18/24 Surgery is scheduled for Mastectomy. ** And that's almost the end of my story. augmentation both breast. The Oncotype test came back insufficient amount to complete test. So in month I have surgery.

I'd like to extend a warm welcome to the group and express my deep empathy regarding your recent diagnosis of LCIS. I personally was diagnosed with LCIS in February 2023 and subsequently underwent a stereotactic biopsy of my right breast. I had a nurse present in the room to help ease my anxiety, and the doctor showed great compassion throughout the procedure. Following the biopsy results, the doctor informed me that I needed to proceed to phase 2 of the process, which involved a lumpectomy with wiring. I understand that this can be an intimidating process. I received the results of the lumpectomy on July 31, and thankfully, the condition did not progress to DCIS. While Tamoxifen was recommended, the doctor decided to monitor me first before prescribing it.

I was diagnosed with invasive lobular carcinoma in Dec. 2023. I also have PLCIS (Pleomorphic LCIS). I had a lumpectomy, but the margins were not clear. I understand that with classic LCIS this would not be a big concern, but with PLCIS, the margins must be clear. So now I am trying to decide between another lumpectomy plus radiation OR a mastectomy. (I am not considering a double mastectomy for now, although I am waiting for results of gene testing.)
I would LOVE to hear from anyone with PLCIS. It accounts for about 5% of lobular cancers, and lobular are only 10 - 15% of breast cancers, so it's rare. Thanks!

@dlst, I had a needle biopsy due to my mammogram showing an architectural distortion. The pathology report found LCIS with micocalcifications. I am having an excisional biopsy on Wednesday. The fact that the LCIS is associated with a sclerosing lesion and microcalcifications makes me wonder if it is PLCIS or FLCIS. Can I ask you if you were diagnosed with PLCIS after the needle biopsy or after an excisional biopsy? I read that classic LCIS is not typically associated with microcalcifications or a lesion. Thanks!

Did you decide what to do? Did you go go with another lumpectomy w/radiation or a mastectomy?

When I was 49 I had LCIS and was prescribed tamoxifen for 5 years. I did end up having a hysterectomy due to large polyps growing on my uterus after having been on it for four years but I did not really notice any other side effects.

That's wonderful to hear that you've had no further issues!
May I ask for how long you did the watchful waiting scans? How many years, and still no further issues?
Alternating mammos with MRI's? Or something else?
Did you have any biopsies in all that time (if so, that I assume were clear)?

I'm personally worried about all the scans, every six months. And more biopsies. Much too anxiety producing for me.

How are both of you ladies now? Well I hope. I have just been diagnosed with LCIS and a few other benign issues in my right breast. I have gotten 2 opinions. 1 Dr. said he highly recommended bilateral mastectomy and the other hormone reducing medication and mammo and MRI rotating every 6 months. Part of me wants to do the meds and part of me wants to do the surgery and get rid of the stress. All of my grandparents and mother have had multiple kinds of cancers each. So far only a great aunt with cancer of breast.

How are both of you ladies now? Well I hope. I have just been diagnosed with LCIS and a few other benign issues in my right breast. I have gotten 2 opinions. 1 Dr. said he highly recommended bilateral mastectomy and the other hormone reducing medication and mammo and MRI rotating every 6 months. Part of me wants to do the meds and part of me wants to do the surgery and get rid of the stress. All of my grandparents and mother have had multiple kinds of cancers each. So far only a great aunt with cancer of breast.

I was diagnosed with invasive lobular carcinoma in Dec. 2023. I also have PLCIS (Pleomorphic LCIS). I had a lumpectomy, but the margins were not clear. I understand that with classic LCIS this would not be a big concern, but with PLCIS, the margins must be clear. So now I am trying to decide between another lumpectomy plus radiation OR a mastectomy. (I am not considering a double mastectomy for now, although I am waiting for results of gene testing.)
I would LOVE to hear from anyone with PLCIS. It accounts for about 5% of lobular cancers, and lobular are only 10 - 15% of breast cancers, so it's rare. Thanks!

I was diagnosed in Feb 2024 with PLCIS. Had lumpectomy. Clear margins - no DCIS or invasive cancer found. They know virtually nothing about PLCIS itself. As a pathologist said in a recent video on YouTube (from Dana Farber) "we are in a data free zone" when it comes to PLCIS. Mine was ER/PR negative. I wouldn't take Tamoxifen -- not at all convinced of its efficacy in my case for PLCIS, and two physicians said for ER/PR negative, there is no prophylactic benefit, anyway. And, as said, I wouldn't have taken it anyway. No data on it at all for patients like myself and there are real risks in taking it. I'm way past menopause. For now, I am doing monitoring, but no MRI with contrast (or, for now) due to false positives and gadolinium contrast concerns. Just the annual mammo/sono combo, with a physical exam by nurse practitioner 1-2 x per year. I had my first post lumpectomy imaging a couple of months ago - one year out from surgery. All clear thus far. "Pure PLCIS" is rare and they still haven't come to a clear consensus how to treat. For now, excisional biopsy (surgery) is necessary, with clear margins, as it has a higher upgrade rate compared to classic LCIS. They just do not know if it's a direct precursor to cancer and do not understand its behavior.
I also have zero BC in my family and tested negative across 77+ cancer mutations genes which includes about 25 or so related to BC.
There is a study--a meta study--in process. Two physicans in Italy are asking institutions around the world who have patients with "pure pleomorphic LCIS" and "pure Florid LCIS", how they were treated, and how they did overtime. If they had a recurrence, what were the circumstances, etc.
Now, this is wild. My breast surgeon at Columbia in NYC said that her team has not seen a recurrence in patients like myself. At least some patients going back as far as 2009.
Of course some do.
I just need more info--A LOT--more info before doing anything more radical.