New here. New diagnosis

Racheal, may I ask what part of the country you are in? I'm curious because some of the info that is being relayed to you is contrary to the experience so many of the rest of us have had with an LCIS diagnosis. What MelissaDallas and others have conveyed here is much more representative of what most pathologists and doctors say about LCIS and is consistent with what is documented in the peer reviewed medical literature. For years pathologist have been trying to get docs to drop the term LCIS in favor of Lobular Neoplasia (abnormal cells). In my opinion the nurses have been unnecessarily alarmist in how they have communicated to you. That's so unfortunate given the stress this puts on the patient. Yes, you have to address this, but as my surgeon has put it, "the house is not on fire". By the way, unlike with other conditions, the need for clean margins is not something that is a factor when doing an excision for LCIS. LCIS is a diffuse and multi-focal disease. Believe me, I've had my share of procedures over the last 8 years because of this. Every once in a while someone will post on here that their surgeon is going for "clean margins" on a LCIS excision but that's not the prevailing treatment as can be confirmed by the medical literature and that's the answer most surgeons would give. Clean margins are a consideration when excision is performed for many other types of breast disease. Take time to read up on this condition and get your questions composed. You owe it to yourself.

And FYI.....most people do not end up with a dimple in their breast due to a lumpectomy for LCIS. It's definitely worth asking the surgeon for his/her opinion on what you can expect but it is by no means a foregone conclusion.

A major city with top medical facilities or a rural area? Is your surgeon specifically a breast surgeon or a general surgeon?

What state do you live in? I wish you could go to a University Medical Center, or better, an NCI Cancer Center's high risk breast clinic. As MVeryDenseBreasts said, you are getting told a lot of very wrong stuff. READ on the referenced NCI link, or Mayo Clinic's website, or Memorial Sloan Kettering's website to learn what is correct. I'd like to slap some of the uninformed people who have talked to you. LCIS is unusual & poorly understood by most medical people who don't specialize in breasts and some of the medical people you've talked to frankly don't know what the hell they are talking about

One of the big reasons why they can't 'remove all the LCIS' (very UNLIKE DCIS) is because LCIS is normally multifocal (which means it occurs in multiple spots in a breast). LCIS is often also bilateral (meaning it occurs in both breasts). They know this because prior to about 1990, the routine treatment for LCIS was bilateral mastectomies, and they could look at the mastectomy specimens. Because LCIS is often an incidental finding when they are doing a biopsy for another reason. This means that LCIS is not reliably detectable by mammograms or clinical exams. Its true incidence is unknown, because the absence of any clinical or radiographic manifestations makes its detection completely arbitrary and random. http://www.ncbi.nlm.nih.gov/pubmed/11348305

As far as I know, you can't reliably diagnose LCIS from ultrasounds or breast MRI either. But this doesn't matter very much, because they normally do not routinely do ultrasounds or breast MRIs on women who are of average breast cancer risk unless they have a suspicious lesion.

So even if they wanted to remove all LCIS lesions, they couldn't (unless they did a mastectomy, and even then they can't remove 100% of breast cells.) The only way they can reliably detect the LCIS spots is to remove tissue samples and look at it under the microscope. So if you do this throughout the breast, then you have a mastectomy.

This means that the virtually all women with LCIS have other spots of LCIS that haven't been removed (unless perhaps they have had mastectomies.) Since probably the majority of women with LCIS who do not get bilateral mastectomies never go on to get breast cancer, that means that probably the majority of LCIS lesions do not progress to become breast cancer.

However, we do not understand how the presence of LCIS puts you at higher risk for breast cancer. Sometimes, the LCIS lesion probably does progress and become breast cancer. But sometimes women who have LCIS get invasive breast cancer in a place that looked totally normal in previous imaging. If a person has both LCIS and invasive breast cancer, sometimes the gene mutations in the LCIS spot are very different than the gene mutations in the invasive cancer spot. In other cases, the LCIS spot has similar gene mutations as the invasive breast cancer. That's why they call LCIS is a 'marker' for an increased risk of breast cancer.

Good luck