Nope, I had never heard of it either. But that didn’t stop me from getting it. The pathology report yesterday showed that the cancer in my left breast was a very small occurence of Paget’s disease, a rare form of breast cancer. It is, however, associated with a larger tumor of in situ, invasive, or infiltrating breast cancers (the more popular kinds) in the same breast 95% of the time. So it’s an important cancer, nonetheless, as it can lead to discovery of a much larger tumor. Here’s the definition of Paget’s, from breastcancer.org:
Paget’s disease of the nipple: This is a type of breast cancer that involves the nipple. The cancer cells start in the milk-pipes or ducts at the surface of the nipple. As the cancer grows on top of the nipple, it forms a dry, crusty, bumpy rash. It can cause itching and burning around the nipple. Sometimes it can also cause oozing or bleeding. Some doctors might think it is just eczema or dry skin. But if you have these changes, and they don’t go away, be sure to see a breast specialist.
I had none of these symptoms. It was either caught before the cancer spread to the surface, or the chemotherapy that I was taking to treat the IBC in the right breast shrank this tumor as well (quite possible, as chemotherapy affects the whole body, not just one tumor). We’ll never know.
What I do know is I’m even luckier than I thought. In June, I learned that 1 in 8 women will get breast cancer. Approximately 5% of those are inflammatory breast cancer. Another 1% of those are Paget’s disease of the nipple. Only 5% of those are independent of another tumor in the breast. That makes the odds of me getting both IBC and Paget’s, but not “regular” breast cancer:
1/8 * 5/100 * 1/100 * 5/100 = 25/8,000,000
or about 3 in a million. Long odds, to be sure, but that’s the math. Who would have thought it?
(Edited to add: There is another woman I know with IBC who I have found out also has Paget’s in the opposite breast. WOW. I don’t even know how to calculate the odds of that happening. But all this makes my survival odds — 40% of IBC patients survive 5 years — look very, very good.)
The margins on both cancers were clean. There was a 2 cm border around the IBC and IBC-affected skin on all sides. So at last we can let out a breath of relief.
The cancer is — definitely, scientifically, and completely — gone.