I have LCIS, anyone else?

@lc1sp123, have you heard the term "scanxiety". It's a real thing. You are not alone and may appreciated the tips members offer in these related discussions:
- Scanxiety: How did you get through scanxiety?
https://connect.mayoclinic.org/discussion/scanxiety/
- How can I defeat my anxiety about medical tests and surgery? https://connect.mayoclinic.org/discussion/how-can-i-defeat-my-anxiety-about-medical-tests-and-surgery/

Hello. In September last year, I was diagnosed with lobular invasive carcinoma in my left breast, not as common as the ductal cancers of the breast. Is that the diagnosis you received? I had a mastectomy and found 29 lymph nodes had been invaded, a tremendous number! Such a slow and sneaky cancer! Hard to detect early. I’ve done oral chemo, radiation, an anaromatase inhibitor (letrozole) and am getting infusions for bone protection every 6 months. Scan found no more cancer but doctors are wary. Me too. I feel well now and also understand the importance of exercise more than ever. Keep moving! Let us know how your treatment goes. Many hugs to you!

Last week (4/17/24) I had my second lumpectomy to remove PLCIS (pleomorphic lobular carcinoma in situ). A small tumor (2 mm) of invasive lobular carcinoma was removed during the first lumpectomy (2/7/24), but the margins were not clear of PLCIS, indicating a second lumpectomy. Unfortunately the PLCIS is less than 1 mm from the new true margin. I will see what my surgeon recommends, but I am worried that this means another lumpectomy or mastectomy. Has anyone had a similar experience with PLCIS?

I just got diagnosed with LCIS this March of 2024, in my right breast. The breast surgeon is recommending lumpectomy followed by a visit to the oncologist to start preventive cancer medicine followed by mammograms/sonograms and mri’s testing every 6 months to a year. My boyfriend feels like I should get a mastectomy to just be done with the whole situation. I’m not quite sure what to do. I’m not crazy about taking medicine that might create side effects down the road or constantly running to the doctor every 6 months or so. Especially when other things can still pop up later. But I’m not sure what a mastectomy would look like (and feel like) for me. It doesn’t seem like the most popular thing to do, why not? Is this too dramatic thing to do?

@carolyn224, sometimes having choices can be so hard. Asking questions is your best plan forward. Luckily others before you have debated the same question about lumpectomy vs mastectomy. See all the discussions related to this decision.
https://connect.mayoclinic.org/group/breast-cancer/?search=mastectomy%20or%20lumpectomy&index=discussions

Note that not all of these discussions refer to a diagnosis of LCIS. So, you'll want to ask your oncologist questions. For example:
- What are the pros and cons of lumpectomy vs mastectomy?
- If I get a mastectomy, will I still have to have preventive cancer medicine?
- What will follow up be like for either decision?
- What are my choices for reconstruction?

Keep in mind that follow up is likely still required with a mastectomy to make sure that cancer does not return. You will continue to have imaging studies of the other breast as well.

Also, make sure you do what is comfortable for you. I know it's overwhelming. How are you doing with all this?

It is extraordinarily overwhelming to have to make this type of decision. I wish doctors would just tell me what to do and I will do it. However, I also had this decision to make. I talked to four different doctors, a social worker, two genetic counselors (fortunately I do not have a genetic tendency that would increase my risk of breast cancer, but I still needed to find out). I also talked to two people who had mastectomies, to find out what their experience had been, as well as two friends who had had lumpectomies plus radiation therapy. I felt totally inadequate to make a decision of this nature, and it made me mad. Doctors have years of training. Why can't they just tell us what we need to do? Since three out of four of the doctors I talked to told me that getting a lumpectomy plus radiation wasn't a bad decision, and that a mastectomy was probably overkill in my situation (stage 1 lobular breast cancer in association with pleomorphic LCIS), I decided on the lumpectomy. I needed two lumpectomies to get a clear margin. So far I am happy with my choice. I can always go back and get a mastectomy if that should become necessary. It's true that each person has to decide for herself if the outcomes are "equal" - that is, the risk of recurrence is statistically the same, but boy is it difficult! I am rooting for you.

This website seems to be an excellent source of information on how to make this decision. I wish I had seen it before I had to choose between lumpectomy and mastectomy. https://www.melbournebreastcancersurgery.com.au/lumpectomy-vs-mastectomy-how-to-choose.html#:~:text=Mastectomy%20takes%20longer%20and%20is,you%20have%20a%20breast%20reconstruction.

The resource I just mentioned concludes with this statement: "The diagnosis of cancer is a stressful experience for most patients. They and their families must make many treatment decisions with limited knowledge and major consequences over a short period of time.
Most of these decisions are made with clinicians they have met for the first time under difficult circumstances." This is absolutely true. One person I talked to told me that making the decision between lumpectomy plus radiation vs. mastectomy was worse than actually being diagnosed with breast cancer! I am not sure I would go that far, but almost. What helped me the most was getting a second opinion from a second surgeon who took an entire hour with me to explain everything in detail, all the options and their implications, what all my pathology and imaging results meant. She thoroughly answered all my questions and provided helpful information I had not been aware of, even though I had been reading everything I could find about my type of cancer. The second most helpful thing was seeing the radiation oncologist to ask him all my questions about radiation therapy. He put my mind at ease to the point that I felt comfortable getting radiation therapy. I was worried about it before I talked to him. My heart goes out to anyone making this decision. I felt angry that I, a person with no medical background, suddenly had to inform myself about all kinds of difficult to understand things, with lots of unknowns, impossible to forecast possibilities of future consequences, with major implications for my quality of life. Anyway, thanks for letting me vent. Anything Mayo can do to help people make these decisions would be great.

I've had LCIS w/ some recurrences since 2012. Do not know what pleomorphic is.
As another Lobular BC patient states along with my more recent surgeon (2022)Lobular is the "sneaky" cancer. I thought I was done w/ it in 2019 (different surgeon & dif hospital cancer ctr.), but it cropped up again in a VERY similar place. (left arm pit both times dodged bullet that it was not in a lymph node) BUT the 2019 surgeon sttated to me that she chose not to be too aggressive with the margins, I didn't really think much of her saying that, just that I trusted her
decision and assumed she had good reason for that....Well I WISH she had surgically left wider margins around the tumor in 2019. My subsequent surgeon who is so incredible and experienced at Duke intimated concern about the previous surgery having conservative margins (I had double mastectomy in 2012) and was more aggressive since the new tumor while small had attached to my arm pit muscle area. There was a suspicious thing on a vertebrae at the time of that MRI/Cat Scan, but radiologists said that it was a bone island and not to worry. Well , this late Fall '23 my PA wanted to have another MRI on my back due to my straining my back (happens a lot in my work) and that "bone island" was biopsied this time around and it was Metastic LBC not actually a Bone Island...so my journey continues , but I think maybe a Mastectomy should be considered since there's not getting around that it is "The sneaky BC" Hoping for your full recovery at this time!