2 diagnoses of LCIS in 2 years

LCIS is commonly multifocal (meaning it occurs in many spots in one breast) and is commonly bilateral (meaning it occurs in both breasts.) Almost all issues concerning LCIS are controversial, including the name.

Strictly speaking, it is not known to be a premalignant lesion, but rather a marker that identifies women at an increased risk for subsequent development of invasive breast cancer. This risk remains elevated even beyond 2 decades, and most of the subsequent cancers are ductal rather than lobular. LCIS is usually multicentric and is frequently bilateral. http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6

The associated risk for developing invasive breast cancer after a diagnosis of lobular neoplasia is multicentric, bilateral, and equal in both breasts. http://www.ncbi.nlm.nih.gov/pubmed/16687097

They know this because before about 1990, they commonly did unilateral or bilateral mastectomies routinely on classic LCIS patients.  In this 1991 paper, Sampling of a single breast revealed multifocal disease in 70% (96/138). When both breasts were sampled, bilateral foci were found in 50% (41/82) http://www.ncbi.nlm.nih.gov/pubmed/1853802.  Of course these exact numbers vary from study to study. 

Since LCIS is usually an incidental finding on biopsy (not usually seen on mammogram, ultrasound, or reliably on MRI), we usually can't reliably know where or if a person has classic LCIS without a biopsy or mastectomy.  Mammographic-pathologic correlation showed that the focus of LCIS in these 19 women was not associated with the mammographic abnormality.http://www.ncbi.nlm.nih.gov/pubmed/7834439

However, if you do have bilateral, multifocal disease, as most of us would,  it is of little clinical importance.  In this 2001 paper To our knowledge, with the exception of a small group of studies that found an increased risk with increasing amounts of LCIS, no association between the features of LCIS and the risk of developing a subsequent carcinoma or its laterality has been identified to date.[4-19]http://www3.interscience.wiley.com/cgi-bin/fulltext/85010798/HTMLSTART

In this 2005 paper, In conclusion, LCIS may be considered a predisposing determinantof risk for subsequent invasive disease in either breast. Riskreduction with unilateral mastectomy is only modest, and completeexcision after lumpectomy is unlikely to result in significantrisk reduction. http://jco.ascopubs.org/cgi/content/full/23/24/5534

Mary-----LCIS is thought to be multifocal, multicentric and bilateral in nature; basically, if you have it, you probably have it scattered throughout both breasts. But the risk is not thought to change whether you have it in one spot or in many spots.

I was diagnosed with LCIS about 6.5 years ago and I also have family history of bc (mom had ILC). I do high risk surveillance with alternating mammos and MRIs every 6 months, breast exams on the opposite 6 months, took tamoxifen for 5 years, and now take Evista for further preventative measures. (tamoxifen is also known to be good for your bones). I don't take any meds for the hot flashes, I just have learned to live with them (I do sleep with a fan even in the winter and I wear layers so I can add or remove as needed)---deep breathing gets me thru most of them pretty well.

I have been very fortunate, I haven't had to have any more biopsies since my diagnosis---but if I do, then I  would probably revisit and reconsider the BPM option.  Everyone is different in the amount of risk that they can live with and the amount of testing/meds/procedures that can handle. We all have to make that decision for ourselves; when enough is enough. I haven't gotten to that point yet, but someday I may be facing that as well. For now, I'm fine with the close monitoring and the Evista. Please PM me if you'd like to talk.

Anne

I just wanted to put my 2 cents in to tell you of my experience with LCIS. I had it 3x in one breast and it indicated that I would be at risk the rest of my life. And yes, it would affect both breasts. This happened in 1988, 1989, 1992 bilaterally and then had  fat necrosis after that on the chest wall. My breast surgeon would not do a bilateral mastectomy and put me on the newly found drug Tamoxifen. I was on it for 5 years. In the meantime in 1992, I had a recurrence of a rare uterine sarcoma that I was diagnosed in 1981 and have had 3 recurrences. Since both of these cancers are hormonally driven, I was on Femara for 7 years and now it is no longer working for my uterine sarcoma. The cancer never came back in my breasts probably because of all these drugs. I just started taking faslodex injections. My surgeon would not do a bilateral mastectomy at that time. He felt that I could get away with taking Tamoxifen. It worked out for me and I never had to have it done. In those years, we had no testing of genes. I took the gamble because I was battling a rarre cancer that kept recurring and I felt like I could not go through yet another surgery. I have had 10 surgeries to date from both cancers. I think you have to think about this and go with your gut feeling.