An anonymous woman discusses her experiences

Ann's NOTE: My sister sent me this through email. She knows that I too had Paget's disease

"Paget's disease is a rare form of breast cancer, and is on the outside of the breast, on the nipple and areola. It appeared as a rash which later became a lesion with a crusty outer edge. I would not have ever suspected it to be breast cancer but it was. My nipple never seemed any different to me, but the rash bothered me so went to my doctor's office for that.

Sometimes it itched and was sore, but other than that it didn't really bother me. It was just ugly and a nuisance, and I could not clear it up with all the creams I had been given by doctor and dermatologist for the dermatitis on my eyes I had just prior to this outbreak.***

Therefore, I went to the doctor's office for assistance. They seemed a little concerned but did not warn me it could be cancerous. Now, I suspect there are not many women out there who know a lesion or rash on the nipple or areola can be breast cancer.

What are the symptoms? Mine started out as a single red pimple on the areola. 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.

The symptoms include 1. A persistent redness, oozing, and crusting of your nipple causing it to itch and burn. (As I stated, mine did not itch much or burn, and no oozing I was aware of, but it did have a crust along outer edge on one side.) 2. A sore on your nipple that will not heal. (Mine was on the areola area with a whitish, thick-looking area in center of nipple.) 3. Usually only one nipple is affected.

How is it diagnosed? Your doctor will do a physical exam, and should suggest having a mammogram of both breasts done immediately. Even though the redness, oozing and crusting closely resemble dermatitis (inflammation of the skin), your doctor should suspect cancer if the sore is only on one breast. Your doctor should order a biopsy of your sore to confirm what is going on. They will take a sample of your breast tissue in that area to test for cancer. If the cancer is only in the nipple and not in the breast, your doctor may recommend just removing the nipple and surrounding tissue or suggest radiation treatments. Had my doctor caught mine right away, instead of flaking it off as dermatitis, perhaps they could have saved my breast, and it wouldn't have gone to my lymph nodes.

My breast cancer has spread and metastasized to my bones; this after receiving mega doses of chemotherapy, 28 treatments of radiation and taking Tamoxofen.

If this had been diagnosed in the beginning as breast cancer and treated right away perhaps it would not have spread."

***Ann's NOTE: An interesting aspect of her testimony for me is that she mentioned she had creams for treating her eyes. I had a similar rash to the look of the Paget's over my right eye and eyebrow, encouraging me to believe the breast/nipple rash was NOT dangerous or important.

I had Paget's Disease in my right breast. I was diagnosed the year after a left mastectomy(invasive lobular carcinoma, Stage 1). After the right mastectomy, it was found to be Stage 0 -no tumors at all, no spread.

Breast Conserving Therapy Approved in Study

Cancer Online, February 2001

Lumpectomy w/RTX Alternative to Mastectomy
Lumpectomy /Mastectomy Same Survival:Paget's Disease
Management of Paget's Disease
Paget Easily Overlooked

J Surgical Oncology, 4/01

Molecular Markers

J Surgical Oncology, 7/01

Analysis of 41 Patients

Am J Clinical Oncology 7/01

Paget's & Radiotherapy

Int J Radiat Oncol Biol Phys

Role of HER-2/neu & Paget' Disease

The Breast J, 11/03

Intraepidermal Paget's Differs From Underlying Ca

J Human Pathology, 12/03

Paget's Disease of the Nipple

LINK to Irish Med Journal, 1998 article-14 Years Experience

Tulane Univ Slides

LINK to actual photos of Paget's Disease

Usefulness of MRI for Paget's Disease of the Nipple

British J Radiology, 12/04

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