Susan Dudley, PhD and Diana Zuckerman, PhD, Cancer Prevention & Treatment Fund
Thanks to heightened awareness of breast cancer screening, women are being diagnosed earlier than ever before. However, that has also resulted in what some experts consider an epidemic of women diagnosed with abnormal breast conditions that are not cancer or may never develop into invasive cancer. Some of these conditions are not at all dangerous, and the others have survival rates near 99%; nevertheless, these diagnoses often sound very frightening. In fact, research shows that these women are often just as worried about whether they will survive as women with the much more dangerous, invasive forms of breast cancer.
There is a wide range of treatment for women with these “stage zero” conditions. Although mastectomies are almost never necessary or recommended by experts, many women undergo mastectomies nevertheless. Research suggests that this is especially likely in the South, Midwest, and Southwest parts of the United States, in certain types of medical facilities, and with older doctors.
Knowing the Facts Will Reduce the Fear
It can be extremely upsetting for a woman to learn that she has any condition that increases her breast cancer risk. Too often, such news leaves women feeling that they must rush into surgery. They agree to – or even insist upon – undergoing mastectomies that they do not really need, in hopes that it will increase their chances of survival. In fact, their chances of survival are already very high, and having a mastectomy will not make it higher.
The good news is that most women with “pre-cancerous” conditions or other non-cancerous breast conditions will never get invasive breast cancer. For example, only 1 in 12 breast lumps is cancerous, and 1 in 5 cases of micro-calcification (white spots seen on mammograms that alert doctors that follow-up diagnosis is needed) are related to cancer, so most women get good news after a breast biopsy. For many women, however, anxiety levels soar when they learn that they might possibly be at risk for breast cancer because of abnormal changes in their breasts.
This issue brief will describe two conditions that are often referred to as “stage zero breast cancer” as well as other non-cancerous abnormal breast conditions.
Ductal Carcinoma In Situ (DCIS)
In recent years, ductal carcinoma in situ (DCIS) has become one of the most commonly diagnosed breast conditions. It is often referred to as “stage zero breast cancer” or a “pre-cancer.” It is a non-invasive breast condition that is usually diagnosed on a mammogram when it is so small that it has not formed a lump. In DCIS, some of the cells lining the ducts (the parts of the breast that secrete milk) have developed abnormally, but the abnormality has not spread to other breast cells. DCIS is not painful or dangerous, but it sometimes develops into breast cancer in the future if it is not treated, and that breast cancer can spread and is therefore dangerous. That is why surgical removal of the abnormal cells, followed by radiation, is usually recommended.
What makes most cancers dangerous is that they are invasive, which means they are not restricted to one spot, but have spread to other cells within the organ where they arose. Once that happens, cancer can metastasize, which means that it spreads to other organs in the body. Experts disagree on whether DCIS should be called “cancer” or “pre-cancer” but everyone agrees that it is not an invasive type of cancer and that DCIS cannot metastasize unless it first develops into invasive cancer.
The goal of treating invasive cancer while it is still confined to the breast is to prevent it from spreading to the lungs, bones, brain, or other parts of the body, where it can be fatal. Since DCIS is not an invasive cancer, it is even less of a threat than Stage 1 or Stage 2 breast cancer, which are the earliest types of invasive cancer.
Having DCIS means that a woman has an increased risk for developing invasive breast cancer in the future, unless she has treatment. Most women with DCIS will never develop invasive cancer whether they are treated or not, but it is impossible to predict which women with DCIS will develop cancer and which ones won’t. That’s why treatment is recommended. A woman with DCIS does not need all the same treatment as a woman diagnosed with invasive breast cancer, but she does need surgery to remove the DCIS, and radiation to ensure that any stray, abnormal cells are destroyed. This lowers the risk that the DCIS will recur or that invasive breast cancer will develop. Some women also try hormone therapy such as tamoxifen or aromatase inhibitors to reduce their risk even further.
DCIS does not need to be treated immediately. A woman can spend a few weeks after her diagnosis to talk with her doctors, learn the facts about her treatment choices, and think about what is important to her before she chooses which kind of treatment to have.
For more information about DCIS, see our booklet.
Treatment Choices for DCIS
DCIS patients have three surgery choices. They are 1) lumpectomy followed by radiation therapy 2) mastectomy or 3) mastectomy with breast reconstruction surgery. Most women with DCIS can choose lumpectomy.
Lumpectomy means that the surgeon removes only the cancer and some normal tissue around it. This kind of surgery keeps a woman’s breast intact – looking a lot like it did before surgery. Under most circumstances, mastectomy does not increase survival time for women with DCIS, and would only be considered under unusual circumstances, such as cases where the breast is very small or the area of DCIS is very large. For women who undergo mastectomy, reconstruction can replace the breast lost to cancer. However, there is some evidence that women with DCIS who undergo mastectomy do not live as long as those who undergo lumpectomy.
Radiation therapy is often recommended for almost all women with DCIS after lumpectomy. This type of treatment is very important because it could keep more DCIS or invasive cancer from developing in the same breast. However, DCIS patients who choose lumpectomy live just as long whether they undergo radiation or not. DCIS patients who undergo a single mastectomy or double mastectomy do not live any longer than DCIS patients who undergo lumpectomy.
Tamoxifen or another hormonal therapy is recommended for some women with DCIS to help prevent breast cancer. The benefit is that it can further decrease the risk of recurrence of DCIS or the development of invasive breast cancer. In the last few years, tamoxifen is sometimes recommended instead of surgery. However, these hormonal medicines can have potentially dangerous side effects, such as increased risk of endometrial cancer, severe circulatory problems, or stroke. In addition, hot flashes, vaginal dryness, abnormal vaginal bleeding, and a possibility of premature menopause are common for women who were not yet menopausal when they started treatment.
Active surveillance is gaining attention as an option for women with DCIS. Active surveillance consists of regular mammography screening to make sure the DCIS does not develop into breast cancer.
Unlike women with invasive breast cancer, women with DCIS do not usually undergo chemotherapy and they usually do not need to have their lymph nodes tested or removed. Since most DCIS will never become cancer, you should consider getting a second opinion if a doctor recommends either chemotherapy or lymph node removal for DCIS.
Experts now believe that most women with DCIS will never develop invasive breast cancer even if they receive no treatment for DCIS. But, if a woman with DCIS is relatively young and healthy, she is likely to choose lumpectomy with or without radiation so that she can put fears of breast cancer behind her.
Lobular Carcinoma In Situ (LCIS)
Lobular carcinoma in situ (LCIS) is also sometimes referred to as stage zero breast cancer. But we shouldn’t let the words “carcinoma” or “cancer” scare women. LCIS got its name many years ago, before doctors realized that it is not breast cancer at all.
Unlike breast cancer, LCIS does not form a tumor. Unlike DCIS, it does not form abnormal cells that can develop into invasive cancer. That is why no surgery is needed to remove LCIS. Instead, LCIS is one of several conditions that may indicate an increased risk for a woman to develop breast cancer in the future. Even though most women who have LCIS never develop breast cancer, a woman with LCIS should talk to her physician to evaluate all her risk factors and to set up a plan to monitor her breast health, such as regular mammograms. This will ensure that any changes in her breast health can be detected and evaluated very early.
How Is LCIS Different from Breast Cancer?
In LCIS, some of the cells lining the lobules (the parts of the breast that can make milk) have developed abnormally. LCIS is not cancer. It does not cause pain or produce a lump. In fact, by itself, LCIS is not a dangerous condition.
How Does LCIS Affect Breast Cancer Risk?
There is no way for doctors to predict whether a woman with LCIS will develop breast cancer in the future. Most won’t, but if they do, it could be in either breast (not just the one where the LCIS was found) and in any part of the breast (not just in the area near where the LCIS was discovered).
What Is the Treatment for LCIS?
LCIS has no symptoms, and is first suspected because of an abnormal mammogram. A biopsy is needed to confirm the diagnosis. After a diagnosis is made, no more surgery or other treatment is needed, even if the affected area is large.
The abnormally developing cells that make up LCIS are often spread around in more than one location in the breast. It may even be in several areas and both breasts. If LCIS is diagnosed in one breast, it is not necessary to search for it or biopsy the second breast or to try to locate each area of affected lobules. That’s because no treatment is necessary regardless of the spread or location.
Women diagnosed with LCIS may question why no treatment is necessary, but experts agree that LCIS is a condition that should be managed rather than a disease to be treated. You can think of it like being overweight, which is a condition that puts a person at risk for heart disease but is not itself heart disease – and people who are overweight do not always develop heart disease.
Women with LCIS who are especially worried and want to “do something” can consider a low calorie or low-fat diet, as well as an increase in fresh fruits and vegetables to reduce their risk of future breast cancer. Although the research is not conclusive, those kinds of dietary changes may reduce the risk of breast cancer, and also have the potential to prevent other diseases. Hormonal therapy (with a drug such as tamoxifen) is also sometimes recommended to reduce the risk of future breast cancer, although it has the potentially dangerous side effects mentioned earlier, such as increasing the risk of stroke and endometrial cancer, and can cause unpleasant symptoms such as hot flashes and vaginal dryness. However, if a woman is very worried and does not feel comfortable without treatment, hormonal therapy is a less radical prevention method than bilateral mastectomies.
Other Non-Cancerous Breast Conditions
Many women who find lumps on their breasts do not have cancer, DCIS, or LCIS. Non-cancerous lumps can be cysts that are filled with fluid, or fibroadenomas, which are smooth, and hard, often feeling like a marble under the skin. Thickened but harmless areas called pseudo-lumps also fall into this category. Cysts are sometimes but not always drained, but otherwise, these conditions usually require no further treatment. Fibrocystic breasts (also called mammary dysplasia, benign breast disease, or diffuse cystic mastopathy) feel bumpy or lumpy and sometimes painful. This condition used to be considered a pre-cancerous disease, but experts now realize that it is not a disease and does not increase the risk of breast cancer.
What About Mastectomy to Prevent Future Breast Cancer?
More than 20 years ago, when breast conditions like these were diagnosed, they were often treated with mastectomy, surgery which completely removes the affected breast. Sometimes a healthy second breast was also removed (prophylactic mastectomy), even when there was no sign of cancer or other abnormalities in the other breast.
Today, thanks to advances in scientists’ understanding of breast cancer and of these other conditions, along with the development of better diagnostic, surgical, and treatment techniques, mastectomy is often unnecessary. In fact, we now know that a less radical treatment (lumpectomy followed by radiation therapy for most DCIS or Stage 1 or Stage 2 cancers) or no treatment (for cysts, fibroadenomas, fibrocystic breasts, and LCIS) is just as effective. The latest research indicates that women who undergo lumpectomy and radiation rather than mastectomy tend to live longer. Except in unusual circumstances, mastectomy does not increase survival time for these conditions, and the risks of mastectomy usually outweigh any benefits.
All articles are reviewed and approved by Dr. Diana Zuckerman and other senior staff.
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