Padget's of the nipple

kristen8594 · 06-06-2011, 10:54 AM

Hello....
I am wondering if anyone has any experience with padgets disease ?
I am eight years out and my and tumor was right on the edge of my nipple. I remember my rad onco saying my breast would change over the years and it definatley has. My last appt at oncol about three months ago thought my nipple looked funky and told me to watch it. She told me padgets is extremely rare but to watch and call her. I haven't called truthfully because I am afraid. Does anyone have any experience with padgets? I just had mamo and mri and everything checked out ok!
Any help would be greatly appreciated.
Kristen

hutchibk · 06-06-2011, 11:02 AM

I was diagnosed in 03 because I had paget's of the nipple. We originally thought it was a rash or skin reaction, but low and behold, it was breast cancer. I can't offer much advice because my surgeon and onc told me I had to have a mastectomy to remove the tissue and duct and nipple... since the tumor had sent the cancer cells through the duct to the nipple, it all had to be removed to be safe. They told me lumpectomy wasn't an option. So, that being the case, I have had no recurrence of paget's.

I know you are scared, but I wouldn't sit on this. I would call your onc and see a breast surgeon quickly.

Lien · 06-06-2011, 01:57 PM

If it is Paget's, you want to have it checked. I know you are scared and that you don't need more cancer issues, but it is treatable.

It usually looks like a rash that won't heal. It could well be a persistent rash, so go and call your doc. If you don't, you'll worry anyway, and perhaps unnecessarily. It's usually better to know and deal with it than to worry, don't you think?

Hugs

Jacqueline

schoolteacher · 06-08-2011, 06:01 AM

I had Paget's.

Amelia

kristen8594 · 06-08-2011, 03:51 PM

Thank you ladies for the info.....I know I need to call the doc. I dont have a "rash" more it looks a little red and some dryness....keeping in mind it is right near the lumpectomy site.

*Amelia could you please describe what yours looked like and what happened?
Can an MRI and mamo pick up padget's?
Kristen

BonnieR · 06-08-2011, 04:34 PM

Kristen, I know you are scared but, as others have said, you really will need to have this looked at by a doctor. Not by discriptions here. And as Lien pointed out, it's just better to KNOW. Especially if it turns out to be nothing and you have spent all this time in limbo. We are all here waiting with you. Keep the faith.
PS, I had Paget's which was discovered during pathology after my mastectomy

hutchibk · 06-08-2011, 08:08 PM

Just so you know, there is not one 'specific' way that Paget's looks... in my case, my GYN was pretty certain it wasn't Paget's at my annual appt, because it was fairly mild looking, around the areola, red, dry & itchy, and it stung a little bit from time to time. It was sometimes a little worse and then other weeks it seemed a little better. She really suspected a dermatitis because she said the couple of times she had seen Paget's in the past, it was really red, and broken skin, with mild bleeding, and scabby.

But she didn't want to overlook something so she sent me for digital mammo immediately. When that came back w/ calcifications and a lump, she sent me immediately to the breast surgeon for biopsy, and when he saw it he said it was definitely Paget's.

emily · 07-07-2011, 05:09 AM

Dear Kristen,

I just wanted to know how you got on with the rash on your nipple that you thought may be paget's disease. I have also had a red rash at the base of my nipple that stings when I put any cream on it. I first had it two months ago and didn't even think about it. When it reappeared a few weeks ago I was more concerned and showed my breast surgeon when I went for my appointment last week. He said he could't be sure and gave me a some cortisone cream. It has just about disappeared but if it comes back I'll be demanding a punch biopsy. Did yours go away or is it still there? I am seven years out but did not have herceptin so am always concerned about recurrence. Nothing showed up on mammogram or ultrasound this time but in early paget's this would be the case.
Wondering how you got on.
Regards,
Emily

'lizbeth · 07-07-2011, 08:07 AM

My Paget's started as flaking in the nipple. When it was advanced the skin started to turn a red smoothness when the cancer was growing.

See the doctor, it is much better than worrying! Plus if it is nothing you can put it behind you and focus on the joys of life!