Atypia and Hyperplasia My biopsy came back as atypical lobular hyperplasia. What does this mean? What are my best treatment options? Atypical lobular hyperplasia (ALH) is a term that describes the type of cells that the pathologist saw and where these cells originated.
Hyperplasia is the first type of abnormality in appearance. If you receive a diagnosis of hyperplasia it means that there are more cells than you would expect to see in the walls of the ducts or lobules, but that all of these cells appear normal. A diagnosis of hyperplasia does not put you at any increased risk for developing breast cancer.
Atypia means that the cells look different from normal cells, but that they don't have all the features of cancer cells.
Lobular means that the cells that are acting unusual are in the lobules, the parts of the breast capable of making milk. The breast ducts are the passages that the milk travels through to get to the nipple. A woman can have atypical ductal hyperplasia or atypical lobular hyperplasia. (See Figure 12.1.)
You can have atypia with hyperplasia, which means that the cells look different from normal and that there are more cells than you would expect to see. You can also have atypia without having hyperplasia. ALH does not always progress to the precancer lobular carcinoma in situ (LCIS) or cancer. In fact, it is not uncommon for a repeat biopsy in the same area of the breast to show entirely normal-appearing cells.
If the ALH is diagnosed on a core biopsy, the best practice would be to have an excisional biopsy (sometimes this is a wire localization excision) to look at the surrounding tissue to make sure that the ALH is not the tip of the iceberg. If it was diagnosed on the basis of an excisional biopsy, you should get more details about the size and severity of what was seen.
The standard treatment for ALH is close follow-up. This is because the presence of ALH increases your risk for breast cancer in both breasts. But it is important to put this increased risk in perspective. A study by Dr. David Page looked at 252 women with ALH that had been diagnosed on a surgical biopsy. He found that 50 of them went on to develop invasive cancer. The cancers were on the same side of the ALH 75 percent of the time and took, on average, 15 years to show up. This means that ALH doesn't progress to cancer rapidly and often never even goes on to become cancer. So, yes, your risk is higher. But it is important to keep in mind that the vast majority of women diagnosed with ALH will never get breast cancer.
In many ways, a diagnosis of ALH is similar to getting an abnormal Pap smear that is not cancerous: Both need to be monitored. Monitoring is especially important if you have a strong family history of breast cancer. You may want to ask your doctor to recommend a program for high-risk women in the area in which you live. These programs provide close follow-up, which means clinical breast exams every six months and yearly mammograms.
Because you have been diagnosed with ALH your doctor may suggest that you consider taking tamoxifen for five years for breast cancer prevention. Tamoxifen began to be recommended for breast cancer prevention in 1998 after the Breast Cancer Prevention Trial found that it reduced the incidence of breast cancer in women with atypia by 86 percent. But it is important to know what "86 percent" really means.
The Breast Cancer Prevention Trial enrolled 13,388 high-risk women. Half of the women were given tamoxifen for three to five years, while the other half were given a placebo. After following the women the researchers found that 23 cases of invasive breast cancer developed in the women with atypia who had been given the placebo, while only 3 cases of invasive breast cancer developed in the women with atypia who were given tamoxifen. Thus, even though a risk reduction of 86 percent sounds large, what it actually represents is the comparison of 3 cases versus 23 cases, and the fact that there were 20 more cases in the placebo group.
What does a reduction of 86 percent mean? Let's say that your risk of developing breast cancer over the next five years was 20 percent. An 86 percent reduction would be 86 percent of 20 percent, or about 4 percent.
Tamoxifen is not a mandatory treatment. It is a choice. To decide whether it is right for you, you need to weigh the risks versus the benefits. And tamoxifen is not without side effects. Findings from the Breast Cancer Prevention Trial published in 2005 showed that women taking tamoxifen had three times the chance of developing endometrial cancer (cancer of the lining of the uterus or womb) compared with women who took a placebo. Specifically, the study found that 53 of the women taking tamoxifen and 17 of the women taking the placebo developed endometrial cancer. Of these 70 cases, 67 were Stage I (which means they were caught early). So, as you see, although it sounds like a large increase in the incidence of uterine cancer, the true numbers are small. Even so, it is a real risk that must be taken into consideration.
The study also found that women taking tamoxifen had twice the chance of developing a pulmonary embolism (blood clot in the lung) as women who took the placebo (28 women taking tamoxifen versus 13 on placebo). They were also more likely to develop a deep vein thrombosis (a blood clot in a major vein) than women on placebo (49 women on tamoxifen versus 34 on placebo). And they also appeared to have a slightly increased chance of stroke (71 women on tamoxifen versus 50 on placebo). Again, the numbers are small. But they are risks that must be taken into consideration.
If you have a family history of breast cancer in addition to atypical lobular hyperplasia and you want to understand more about whether your family history may contribute to your breast cancer risk, you should make an appointment with a geneticist. If you do decide to have genetic testing and if you are found to carry one of the BRCA gene mutations that put women at higher risk for breast and ovarian cancer, your doctor may suggest that you consider a bilateral prophylactic mastectomy (removal of both breasts). This will reduce the chance of getting breast cancer by about 95 percent. The surgery is only recommended if you have a strong family history of the disease. It is not recommended for women just because they have had a diagnosis of ALH.
