Ideas have changed in the 20 years since I was diagnosed with lobular carcinoma in situ (LCIS). My doctor advised me to have check-ups every three months and a yearly mammogram. She added that I would hear about another possibility for women with LCIS, but left no doubt that her recommendation was careful follow-up. She was firm enough that when I learned the alternative was double mastectomy, I gave it less consideration than I might otherwise have.
At the time, the medical community was evenly divided on whether to recommend careful follow-up for women with LCIS or a bilateral prophylactic mastectomy. (A single mastectomy is not an option because LCIS indicates a risk for breast cancer in both breasts.) These days it would be unusual for doctors to recommend a double mastectomy for a woman with LCIS and no other risk factors, but other options might be suggested. Tamoxifen is sometimes used for prevention in women who are high risk for breast cancer, and MRI’s may be used in addition to mammograms for screening. And, of course, a woman can reduce her risk for breast cancer with certain lifestyle changes.
So why, then, are there women with LCIS on message boards at several web sites agonizing over whether they should have bilateral prophylactic mastectomies?
The majority of women diagnosed with LCIS never get breast cancer. I have not — so far — and I did not have prophylactic mastectomy. I suspect women are told there are options without being told as clearly as I was that one of the choices is by far the most reasonable. When we hear there are various ways to treat a disease, we might assume the most drastic is the best. In this case it is not.
LCIS is not cancer, and it is not even considered a true precancer because if invasive cancer develops, it does not necessarily arise from the LCIS cells. LCIS is a warning sign that a woman is at risk for breast cancer. It sounds scarier than it is because it is called a carcinoma, or cancer. It got that label when it was first identified under a microscope years ago because the LCIS cells looked like cancer cells. The fact that there were important differences in their biological activity was learned later on.
The danger with invasive cancer is that it can spread outside the breast to other organs. LCIS does not have that capacity and remains in the breast. The phrase “in situ” is Latin for in place – and that is where LCIS stays.
There are some exceptions to favoring careful surveillance for women diagnosed with LCIS. Those who have a strong family history of breast cancer, those who have a defective form of the breast cancer gene, and those who have a type of LCIS called pleomorphic LCIS might take this warning more seriously and be advised to act more aggressively.
When the choice is not clear, however, it is wise to go for a second opinion. The best place would be one of the National Cancer Institute approved cancer centers. If there is not one nearby, look for a breast specialist by checking with a large hospital in your area. Friends, family, or your internist or gynecologist may be able to recommend a breast surgeon.
It might also be advisable to get a second opinion for the pathology report on tissue removed during biopsy. My doctor does this because there are sometimes difficulties identifying LCIS on pathology slides.
Tags: breast cancer, cancer centers, carcinoma in situ, health, high risk, LCIS, lobular carcinoma in situ, mastectomy, prophylactic mastectomy, second opinion
