In need for advice on pagets disease of the nipple.

DanaMay87

Hello,

I just joined this site and I'm in desperate need of advice or any information or opinion's on pagets disease. It took a lot for me to finally reach out about my concerns and I do have an appointment with a dr coming up but really just would like to here anyones expeirences on pagets disease. How it felt, what it looked like, or how the symtoms went on before being properly diagnosed. I have been dealing with my issue for going on 4 months. I am now going to most likely have a biopsy done but how accurate is that test in getting a proper diagnossis?

Moderators

DanaMay, welcome to Breastcancer.org.

Until other members post with their experiences around Paget's disease, you can read more about this rare form in the Paget's Disease of the Nipple at the main Breastcancer.org site.

Best wishes,

• The Mods

hoping42

Hi there!  I was diagnosed with pagets disease after my lumpectomy (2/5/2013)for dcis.  DCIS was found by routine mammogram, I wasn't too concerned about the nipple until that diagnosis.  The dcis was confirmed by a stereotactc biopsy.  After all that, I was adament that I wanted a punch biopsy done as I felt something was just not right witht he nipple of my left breast.   No one else seemed to concerned about it---glad I pushed the issue.  My surgeon (who I really trust and like) agreed to do a punch biopsy during the lumpectomy procedure.  As for my sympotoms, I noticed lots of itching of the left nipple only-this began October 2012-(I tried over the counter hydrocortisone creams) and some sticking to my bra leaving small spots of discharge there.  After Pagets was confirmed I got a bilateral mastectomy (2/21/13) which I just got the drains out today-one day shy of three weeks.  They serve a purpose, so I am glad I had them, but so glad they are gone!  I opted for immediate reconstruction and will see my oncologist for the first time tomorrow.  I don't know what other treatment I may have. My doctors say that anything further will be for prevention vs. treatment.  My dcis was er/pr -, her2+  (I am 42).  Thankfully no nodal involvement--my official diagnosis was Tis, N0, M0

Take care and sending you hugs! 

Danielle

DanaMay87

You are in my prayers for a continued healthy recovery. Thanks so much for responding to my concerns. Did u have any sores that didn't heal or go away and caused a burning tingly feeling? I have this white flaky sore that just won't go away. My mammogram is coming up also an ultrasound I'm just hoping that they could figure out whats going on after these tests.

hoping42

Thank you!  I need all the prayers I can get-and am sending them right back to you!  (:

I did have a sore that didn't heal-it would get better with cortisone creams-but never really healed.  I didn't have a lot of flaking, but did notice that the nipple was a little flatter than the other and felt "gritty". I noticed a lot of itching on the tip and a sore--but I actually thought I caused the sore because of scratching it.  That probably was not the case.  The discharge was like pinpricks on my bra--kind of strawish colored.

I do hope that you find answers after your mammogram and ultrasound.  I will say that my pagets was not found on either-or the mri for that matter.  It was found on the punch biopsy following the lumpectomy.  Again, I just knew in my gut something was not right.  You may consider asking them to do the skin test for peace of mind.  Remember that pagets is very, very rare.  I was so hoping that I was just being over cautious-but I also knew I would worry about it until I knew for sure what was going on there.  They think that mine was directly related to the dcis-I guess a rogue cell that entered the nipple via the duct.  They had a hard time finding it after the mastectomy as it is believed that 99% of it had been removed in the punch biopsy.  I am glad to know that.

Remember, too, that there are things that could be causing your symptoms that are harmless like a skin condition, allergy to laundry soap or clothing--numerous things.  I hope that everything is a okay!

Take care and if there is anything else I can do, please ask.

(:  Danielle

Elisa51

Hi, I've been positively diagnosed with Pagets of the breast. I first noticed a small red circle around my left nipple about 7 months ago and after much back and forth; mammogram which showed nothing, an ultra sound which indicated an extra layer of skin under the nipple and then a "wedge" biopsy which confirmed Paget's. I'm now scheduled for mastectomy on April 2nd. Had an MRI on March 12th get results today. Paget's is only 1% of all breast cancers out there and based on all the information I've gathered a mastectomy is still the safest way to go. This is not a death sentence. Urge your physician to get a wedge biopsy done as soon as possible so you can move on with your life. The prognosis is excellent at Stage 0. 

hoping42

Hi Elisa 51!  Sending you hugs!!!  I am new to this diagnosis too--my post above gives the details. 

Take care and sending lots of positive thoughts and prayers!

Danielle

NATSGSG

Hello ladies:

There are at least 4 threads here that asks about this disease. I've already posted the information at those threads, but decided to copy and re-pasting it at your thread to make it easier and convenient for everyone visiting your thread too. The link below contains 2269 scientific articles of Paget's disease of the breast that I hope you'`ll all find informative and useful

http://www.ncbi.nlm.nih.gov/pmc/?term=paget+disease+of+the+breast

In the interim, please consider visiting the Society for Immunotherapy of Cancer (SITC) site to see if there's anything in the works using immunotherapy (current hot cancer treatment topic) to treat this disease, or consider having them include you in their distribution list to get any latest development? Here's their link:

http://www.sitcancer.org/sitc-meetings/presentations?utm_source=Email&utm_medium=April%20IM&utm_campaign=IM%20PL%20edu%20Opps

P.S.

Below is VIDEO link that talks about the use of immunotherapy in cancer treatment. Fascinating to watch, good to know.

http://videocast.nih.gov/summary.asp?Live=15875&bhcp=1