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What's Paget's Disease of the Breast?

My sister has been diagnosed with Paget's disease of the breast. Her doctor mentioned it was hereditary and suggested that family members get tested. What information can you give me about this condition?

Paget's disease of the breast* makes up only 3 percent of all breast cancers, so it is relatively uncommon. However, because this form of cancer starts in the milk ducts and spreads to the surface of the nipple, some women mistake it for a rash. Usually, it burns or gets scaly and itchy, and looks very much like eczema or a sore that won't heal. (If both nipples are affected, you probably do have eczema -- Paget's disease of the breast rarely occurs in both breasts.)

The outlook for this disease is quite good -- better than most forms of breast cancer. In most cases, if it hasn't spread, surgeons can remove the nipple and leave the rest of the breast. The nipple can be reconstructed later with plastic surgery. If you're diagnosed with this disease, your lymph nodes will probably be tested to see if the cancer has spread. Sometimes, if the condition is left untreated, the tumor will gradually spread into the breast or into the lymph nodes. In these instances, the disease is much more serious. The outlook then depends on the size of the tumor and the degree of spread to the lymph nodes.

Because your sister has had breast cancer, the women in your family should be vigilant about self-exams and begin having annual mammograms at age 40. But all women should seek medical attention if they notice any skin changes, especially around the breasts. If your sister were one of a long line of women in your family who had breast cancer, you might want to consult a genetic counselor to discuss the benefits and risks of testing. But if she is the only one with the disease, I'm afraid you'll have to chalk her case up to bad luck and do everything you can to speed her recovery. Most people don't realize that 70 percent of all breast cancer occurs among women who have NO family history of the disease. Paget's disease of the breast is no more hereditary than any other type of cancer.

* Paget's disease of the breast should not be confused with Paget's disease, which is a bone disorder.

 

 
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