By: Jean Johnson for Fibroids1 Paget’s disease is a rare form of breast cancer characterized by dermatitis and eczema-like symptoms in the nipple area. A woman whose cancer did not benefit from early detection, penned her thoughts prior to her death. “One of the biggest problems with Paget’s disease of the nipple is that the symptoms appear to be harmless. It is frequently thought to be a skin inflammation or infection, leading to unfortunate delays in detection and care.”
Because Paget’s disease represents only approximately 2 to 4 percent of breast cancers, misdiagnosis does occur. In the case of the woman in question, her untreated Paget’s disease metastasized to her bones before physicians realized she had cancer. Thus even “mega doses of chemotherapy, 28 treatments of radiation, and taking Tamaxofin” could not save her.
“Mine started out as a single red pimple on the areola led to a rash and lesion with a crusty outer edge,” she wrote. “Sometimes it itched and was sore, but other than that it was just ugly and a nuisance and could not be cleared up with all the creams prescribed by my doctor and dermatologist.”
She went on to explain that even though burning and itching are considered symptoms, she did not experience either problem to a great extent. She did have some discharge from her nipple, though, another common occurrence with Paget’s disease. Those with Paget’s disease have tumor cells in skin of the nipple and often in the milk ducts within the breast, where the malignancy may be confined during early stages of the cancer. The disease usually affects a single nipple only.
According to former attorney, cancer survivor, and director of the Portland-based Native People’s Circle of Hope, Celeste Whitewolf, people must be their own advocates in the medical world.
“The key is people listening to their bodies – their nipple that says it’s itchy or draining, or whatever part of the body that is in distress,” Whitewolf said. “Yesterday I spoke to a lady who had bladder cancer. She had to go back three or four times to convince her doctors that she had a serious complaint that was not responding to treatment.”
Whitewolf concurs that early detection in breast cancer is critical. “I’ve come across a lot of women with various stages of breast cancer. One of my friends caught hers in stage 0 when it was the size of a seed because she’d gone regularly every year for her mammogram. Others like me who let their checkups slide tend not to find their cancers until they reach stage 3 or 4,” Whitewolf said. “Mine was the size of a walnut and consequently I had to go through the whole regime of a mastectomy, radiation and chemotherapy.”
Since Paget’s disease symptoms appear externally, even those who might be behind on their mammograms can still be proactive. The central issue, though, is a willingness on the part of patients and their families to insist the medical world be vigilant in testing and treatment until symptoms are either resolved or explained satisfactorily.
