Paget's and DCIS

MTM

Hi... I have a question for whomever might have more info re: Paget's and treatment. I had been diagnosed with Paget's and DCIS. I have since had surgery and did bilateral mastectomy. My patho came back ER and PR negative and I didn't even see HER test. My doc said no chemo radiation since everything was clear... Margins, sentinel and lymph bit he took out 15 to be safe. When I asked my oncology doc what he knew about Paget's he said I see once case every five years or so (which means not much) so now I am afraid something might be overlooked. what have you learned about Pagets that maybe I am not seeing online? I am afraid because it is rare that we might overlook a needed treatment. I much prefer no chem/rad but would hate to go thru all this and find out I should have done it.

cinnamonsmiles

Here is what the American Cancer Society says about Paget's:Paget's Disease: A New form of Breast Cancer?
Email:

This email warns women about a rare form of breast cancer called Paget's Disease, and tells them to be alert for a rash that appears around the nipple which can be misdiagnosed as a dermatological condition.

Fact:

This email is actually a very plausible description of a case of this rare condition. Paget's disease of the nipple starts in the breast ducts and spreads to the skin of the nipple and then to the areola, the dark circle around the nipple. It is rare, accounting for only 1 percent of all cases of breast cancer. The skin of the nipple and areola often appears crusted, scaly, and red, with areas of bleeding or oozing. The woman may notice burning or itching. If no lump can be felt in the breast tissue, and the biopsy shows no invasive cancer, the prognosis is excellent. It's cases like this that prompt the American Cancer Society to urge women to know how their breasts normally feel to more readily detect any change. If any change occurs, such as development of a lump or swelling in the breast or underarm area, skin irritation or dimpling, nipple pain or retraction (turning inward), redness or scaliness of the nipple or breast skin, or a discharge other than breast milk, you should see your health care provider as soon as possible for evaluation. However, remember that most of the time, these breast changes are not cancer. American Cancer Society Medical Editor Ted Gansler says, "I do not doubt that some cases of Paget's disease might be initially overlooked and attributed to a benign skin condition. Although this is a chain e-mail and "areola" is consistently misspelled as "aureola", most of the medical information is accurate, and I wouldn't call this a rumor.

It sounds to me that like DCIS, if you have bilateral mastectomies and your nodes are clear, chemo is not needed. Pure DCIS is found only in the milk ducts, so if you have clear margins, you would not need chemo for sure, and no radiation.It sounds like your Paget's didn't spread anywhere to become a higher grade cancer, so it sounds like your onocologist is doing the right things. This is just my opinion though, I am not a doctor. 

MTM

Yes, I agreed this is not a rumor... It is a clear depiction of Paget's. I have since found my patho from both--

---DCIS stage 0, margins, sentinel nodes and lymph clear. ER and PR neg. I learned they don't test the tumor for HERneu2 test. (however you word it)

I didn't just have DCIS but Paget's as well hence questioning...

---Paget's Tumor high grade and positive for her neu 2



So is total BMX appropriate enough for both? Without chemo radiation as I have read in Paget's women have utilized herceptin... Not sure if that was just after lumpectomy?



I am sure I'll find out soon enough once I get my specialist appt... Thanks for everyone's input.