Paget's breast cancer

I just found out I might have Paget's breast cancer, still waiting for the biopsy.  I feel like it is going to come out positive and I am trying to remain calm, but feel this huge tsunami coming from deep within.  It seems most people decided on a mascectomy and then reconstruction.  I cannot imagine having my breast removed, I just don't know what to do or how to feel right now, I think I am in shock and still numb...mammogram came out clean but there is obviously something wrong and the doc said she feels it is Paget's but we won't know more until after a biopsy.  It is on my left nipple and very painful for about a month now...I am not sure what to do, I feel frozen but know I must keep moving...I am only 49 years old...

Dear Hannahbannana thank you for you support, I feel like I was lead to this forum as I am pretty sure I am going to need the support.  I have read a lot on Paget's breast cancer and realize there is more to it than meets the eye.  Almost 95% of all Paget's breast cancers have an underlying cancer, so the fear is already there and I am trying to figure out what I have.  I have contacted the Huntsman Cancer Institute here in Utah where I live and am waiting to hear back from them.  I want my biopsy, MRI and all testing and treatment to be done by someone who knows what they are doing.  Unfortunately and fortunately I work in the medical field as a medical office administrator for neurosurgeons so I think I know too much and yet am glad for the connections.  Again thank you for your support and for you quick response.  How are you dealing with the mascectomy without me prying too much?  JoiHappy

Hi,

How are you doing now?   I am noticing that, although statistics state that this is more common in older women, it's become more common in younger women as well.  Are you on any medication?  How big was your wound? Sorry for prying.  I am just feeling very helpless at this point and any encouragement will help.  Thank you for sharing.

Hi everyone...I am new to the site, and very nervous that I am in the wrong place (not very computer savy about these things), so please forgive me if I do this incorrectly....I need some advice about Paget's or Paget-type symptoms...I don't know if I should be concerned or not. A while ago I developed that itchy scaly symptom that makes you insane - scratching makes it worse - the creams don't help....it went on for months and I wasn't concerned until I started to have the discharge from the small areas and occasionally the nipple. I went to the doctor, he prescribed a cortisone cream and diagnostic mammo. The cream didn't work and the mammo was inconclusive. After 2 more rounds of stronger creams, oral steroids, an ultrasound, MRI and finally a punch biopsy we still had no answers. The final straw was that my breast was shrinking. No one that I saw could explain to me anything that was happening and I think I became a source of aggravation for my docs. I just wanted to know why, and they couldn't explain it - this seems to make them very angry! The last visit I had with my doc he told me he didn't know what or why and maybe I could go see a plastic surgeon to let them fix it. I haven't been back to the doctor since. Eventually the itchy scaly symptoms subsided - the size is still smaller though, and I thought maybe it was some crazy something...well a week ago I noticed the itchy tenderness coming back, and the skin is starting to scale around the nipple....I know where this is going, I just don't know what to do. Am I crazy?

Did you go through chemo or radiation?

What about HER?  Are you + or -?

Thank you.

Hi Hannahbanana

I have your read replies, I hope that you are still reading this site, I cannot tell how this has helped.

I have recently been diagnosed with Pagets disease, I had an operation to remove a lump in my duct because my breasts was leaking last year October 2008, (my right breast), the nipple would not heal, I went back several times and was told that it takes time to heal, my nipple was extremely painful and yellow pus and blood was coming it from it, I was given different courses of anti biotic and told to use nipple cream.

It would heal for a short time and then start crusting and bleeding again. Through being sent an E-mail on Paget Disease, I requested to see my consultant again, he then decided to conduct an ultra scan just to pacify me, and they found a lump, it was extremely small but it register some cell changes, whilst the surgeon was performing  a lumpectomy the nipple started oozing and he decided to conduct a biopsy of the nipple and that is how my Paget's was diagnosed. I have to have a mastectomy with reconstruction  LD with implant in November 2009, what is the healing time for an operation like this. How long from being diagnosed to operation?

Hi Hannahbanana

I am having reconstruction and reduction at the same time as I am on Warfarin because I have an artifical heart valve they are afraid that because I have major surgery before and they do not want to keep on opening up.

The waiting is killing me. I don't know what questions to ask, I cannot even remember the plastic surgeon name.

Paget's of the nipple IS cancer.  The difference is :

Yes it's rare,  it can be found by itself but more commonly is only one breast and with an underlying secondary cancer. When it is the only cancer it has an incredibly good success rate for treatment. When it is with a secondary (transformation is the correct term.) the secondary is the focus of the treatment and drives the decision tree. There are some theories as to why but nothing definitive yet.

Hi guys, I am having symptoms of Paget's, you can read my previous posts for a full explanation.  The only symptom I have is the flaking/peeling/crustiness of one nipple.  The symptoms come and go.  I had a punch biopsy performed however there was not much flakiness the day of the biopsy.  The results came back as a benign fibroepitheleal polyp...

 I am questioning this result because it is a skin tag and I do not have any sking tags or any sort of growth on my nipple.. my follow up with the breast surgeon is on monday....

what do you ya'll think?  what would ya'll do if you were me?

 I plan on waiting to see what the breast surgeon says to see if it makes sense...or explains what is happening to my nipple...

 What type of biopsy is best? What kidn did you have and was it accurate?

Whatever is going on, I would like to catch it early and make a 100% certain it is nothing serious.  

I have been complaining of right nipple crust for 3 years till now, I am only 34 and have no family history of BC. I am familiar to fibroadenomas in both breasts.

The worry is eating inside me and I am unable to enjoy my life, which is causing lots of issues and fights with my husband. I am unable to take a decision. I did two FNAB 10 month after the issue started. It all came clean. I have an underlying movable math right underneath my areolar. It is like a disc or something. I have crust in my nipple. No other complains such as lymph nodes, or skin changes in the breast or shape. My nipple is a bit pinkish in color and looks puffy. No bleeding or oozing.

I visit my surgeon every month not because of complaint but because of worry. I was told by 7 doctors that this is fibrosis or papilloma which mimics paget's. I was told if it was paget's or BC you could have no lived this long without developing further symptoms. I was advised not to remove it since treatment means that they will do a nipple excision and areolar which will cause me a psychological pain and discomfort.

I lost lots of my years in panic and worry, I am unable to live a normal life and afraid to take a further step. The doctor says its my call if I want to remove it, but his recommendation not too.

What if he was wrong, or had miss-diagnosed me! Do I go for excision of the nipple and areolar complex!



I ma really afraid, and would like others who experienced paget’s to help me with the symptoms and share their experiences. What else could be similar to paget’s and is a benign disease, anyone knows.

My sister had Pagets.  She had a kind of raw, irritated area on her nipple that would drain a little causing her bra to stick.  It was sore to touch and her nipple became flat.  Her mammogram showed thickening of the nipple and calcifications beneath.  Have you had any biopsy of the nipple yet?  The biopsy for Pagets' is usually a simple punch biopsy that can be done in the office.  I would think that it would have worsened over the past five years if it were malignant. Hope you have a definitive answer soon.

Alli