Expert Patient PJ Hamel takes you through the basics of Inflammatory Breast Cancer and Paget’s disease.
Q. I’ve been diagnosed with inflammatory breast cancer. What can you tell me about it, and what my treatment might be like?
A. Inflammatory breast cancer (IBC) accounts for fewer than 5% of new breast cancers. Unlike most breast cancer, it doesn’t start with a lump. Instead, it’s characterized by your breast skin turning red and feeling warm, much as it would with mastitis or another infection. Unfortunately, IBC is often mistaken for an infection, and thus valuable time is lost while the woman takes antibiotics in an attempt to cure the “infection.” A key sign: a true breast infection changes over time, either responding to the antibiotics and going away, or not responding, and getting worse. IBC is more likely to look the same, often for many months, although you also might develop swelling as it progresses.
IBC is caused by cancer cells that have gotten into the lymph vessels in your skin, and are blocking fluid drainage; thus the redness and possible swelling. Since cancer is in the lymph system, a mastectomy isn’t the first course of treatment, as it might be for a woman with IDC. Instead, chemotherapy is used to try to kill the cancer cells, wherever they may be. This is usually followed by a mastectomy, then more chemotherapy, and finally radiation to the chest, often followed by long-term drug therapy.
IBC usually occurs in younger women, and it’s tougher to deal with than other cancers; the survival rate for IBC is about half that of the majority of breast cancers. However, that survival rate for IBC is increasing more quickly than for other cancers, so progress is being made. Good luck as you go through treatment.
Q. I have Paget’s disease. It’s rare, so I haven’t been able to find out much about it…
A. Like IBC, Paget’s disease (its full name is Paget’s disease of the nipple) accounts for fewer than 5% of all breast cancers. It usually occurs in older women; the average age for a woman with Paget’s is 62. But thankfully, unlike IBC, its treatment success rate is comparable to that of the majority of breast cancers. (By the way, Paget is Sir James Paget, a 19th-century British physician who was the first to notice the association between changes in the nipple and underlying breast cancer.)
Paget’s disease is characterized by itching, scaliness, redness, or oozing of the nipple. This can be very mild at first; in fact, many women with Paget’s are initially treated for eczema. 97% of women with Paget’s disease are found to have underlying invasive breast cancer or DCIS, so it’s presumed that it’s an offshoot of those cancers. (In the 3% of women without DCIS, it’s theorized that cells in the nipple just spontaneously become Paget cells.)
Q. So, what’s the treatment?
A. That depends on what kind of cancer is discovered in your breast (assuming you’re in the 97% of women whose Paget’s disease stems from an underlying breast cancer). Your treatment will be for the breast cancer you have aside from Paget’s: typically, DCIS, LCIS, IDC, or ILC. In addition, no matter what other type of breast cancer you have, your nipple and areola (the darker area around the actual nipple) will be removed. This gets rid of the Paget cells; you’re basically having a tiny little “nipple mastectomy.” If you’re having a lumpectomy-i.e., you’ll be keeping your breast-ask your doctor about reconstructive nipple surgery. Hey, if insurance covers it, why not, right?
PJ Hamel is senior digital content editor and food writer at King Arthur Flour, and a James Beard award-winning author. A 16-year breast cancer survivor, her passion is helping women through this devastating disease. She manages a large and active online survivor support network based at her local hospital and shares her wisdom and experience with the greater community via HealthCentral.com.