Lobular Carcinoma In Situ (LCIS)

Patient Expert

Expert Patient PJ Hamel takes you through the basics of Lobular Carcinoma In Situ, from what LCIS is to what treatment to expect.

Q. I've just been diagnosed with LCIS. The doctor said it's not really cancer; but if that's the case, why is it called cancer? I'm confused!

A. LCIS-lobular carcinoma in situ-is NOT cancer. But it's a sign that the woman who has it is 6 to 7 more times likely to develop cancer, over the course of her lifetime, than a woman who doesn't have LCIS: the same risk you'd be at if your mother and sister both had cancer. So the doctor's right, you don't have cancer; but you ARE more likely to get it than most women you know.

Q. So, exactly what is LCIS?

A. The milk your breasts produce is manufactured in tiny little sacs called lobules. These lobules are usually empty, but sometimes abnormal cells start to collect in them. If only a few cells collect, the condition is called hyperplasia: an excessive growth of benign cells. If the lobules are really stuffed with cells, you have LCIS, also called lobular neoplasia. Again, this isn't cancer; but, just as the barometric pressure falling means it might rain tomorrow, LCIS is a "general risk factor," a signal that you might get cancer. The same impaired immune defenses in your body that have allowed LCIS to occur could possibly let cancer get a foothold, as well.

Q. What's the treatment for this? Or do I just have to wait around for 30 years to see if I get cancer?

A. The treatment will depend on your comfort level. If you're not much of a worrier, don't have any other strong genetic risk factors, and feel able to handle the fact that you're pre-disposed to breast cancer, the course of action recommended most often is "watchful waiting." You'll be encouraged to get a breast exam every 4 to 6 months, and a yearly mammogram. That way, if cancer does develop, you'll catch it early.

If you have a family history of breast cancer, and/or a strong emotional reaction to LCIS, you may consider treating it, rather than just maintaining a watchful eye. The most drastic treatment, of course, is bilateral mastectomy: removing both breasts. With all your breast tissue gone, you have no chance of developing breast cancer. The other treatment choice is taking tamoxifen, a drug that prevents cancer cells from growing by starving them of the estrogen they need. Studies have shown that women with LCIS who take tamoxifen for less than 5 years cut their breast cancer risk by 56%. The jury's still out as to how long this protection lasts, though the most recent studies show it lasting quite a few years beyond when the woman stops taking it. As with any drug, tamoxifen carries its own possible side effects, so those need to be weighed against the risk of cancer.

Q. I've heard of a friend of a friend who had LCIS, and she had a lumpectomy, radiation, AND chemotherapy. Was that just to be on the safe side, or what?

A. Some doctors feel that this treatment is helpful, but the mainstream believes that LCIS is NOT cancer, and shouldn't be treated as cancer. Why put yourself through cancer treatment if you don't have cancer? If your doctor suggests this cancer-type treatment, it might be wise to get a second opinion. Perhaps, in the end, there's something about your particular LCIS that makes treatment desirable; but don't assume that it can be cut out or burned away or killed with chemotherapy because again, LCIS isn't cancer; it's a risk factor, and risk factors aren't something that can be physically eliminated.