Questions for those that had/have paget's disease of the
 

The day after Annette's second surgery she noticed her nipple was
quite red, she mentioned it to the surgeon on the next visit and
he stated his surgery was right under the nipple area and that it
was just probably part of the healing process. She also mentioned
it to the oncologist after a few weeks because it had not improved
and he said talk to the surgeon. In the meantime she started her
radiation treatments and on the 6th day of radiation she noticed
there was a small "crusty" area on the areola so today after her
9th treatment she saw the radiologist/onclogist and pointed it out
to him who said patients taking radiation can get this but it
ususally doesn't happen until later in the treatment but he didn't
seem concerned.

My question is .... should she be concerned ? Does this sound
familiar to any of you ladies that had paget's disease ?

Hi Lin
 

I had Paget's disease of the nipple and it was exactly as you describe, a brown 'crusty' spot, looked like a scab to me, but mine was right on the nipple. When I saw my doctor about it she said it was a fungal infection and prescribed some antibiotic ointment(!). Six months later I was diagnosed with invasive breast cancer and Paget's disease of the nipple. I believe Paget's disease is a separate kind of cancer, so in my case I had two kinds of breast cancer. Obviously, for Annette, the whole area has suffered a lot of trauma which could indeed be the cause, but if a little voice is talking to you, you should listen to it and do not hesitate to get a second opinion. Don't take chances - there's no downside to being diligent when it comes to this stuff.
Good luck to Annette, please let us know how it goes.
All the best,
Jade

It's me again....
 

Me too - I had Paget's of the nipple. I was led to believe at DX time that it was probably a progression of my primary BC, that my primary ductal tumor had sent cancer cells through the milk duct to the nipple. (I never really researched it much beyond that, so I am interested in the theory that it might be a separate cancer altogther). Because of the Paget's, I was unable to have lumpectomy - I had to opt for full mastectomy with recon so that the entire affected milk duct and nipple and skin area was removed.

My Paget's started on the lower right side of the nipple/areola as red/scaly/itchy. It would improve a little with neosporin, and cortizone cream would make it stop itching for short periods of time. It eventually spread a little to more of the nipple and areola area, and as it slowly worsened itch wise, it also started to sting. I thought it was exzema or skin irritation/allergy to laundry detergent. At my annual exam when my gyn also discovered a small lump, she didn't want to take any chances, so she sent me straight away to digital mammo, ultrasound and biopsy. It was my surgeon who confirmed it was Paget's the day that I was in his office for the needle biopsy.

Hope this helps.

Re: Questions for those that had/have paget's disease of the
 

Hutchibk did the surgeon confirm it was pagets based on the way it looked? Or she had the needle biopsy results right then? Surely they can't do that sort of thing in office, right? I'm having a biopsy Monday for possible Pagets so curious. Thank you!

Re: Questions for those that had/have paget's disease of the
 

Akb, I had Paget's (see my signature). It started out with a nippe discharge like green nose snot. EVERYONE misdiagnosed it as an infection ... my surgeon, who thought it was Paget's from the beginning, insisted I come back for a followup after my diagnostic mammo and ultrasound, etc etc yada yada said I was fine. By the time of the followup, 8 weeks later, it was bleeding.

It was actually a blessing in disguise for me because without the nipple/Paget's ... I would never have had any surgery, I had just had a clean diagnostic mammo and ultrasound. The Paget's is what started everything and why I had the initial surgery.

Good luck on Monday, keep us posted, and any other questions please let me know!

Carol Ann

Re: Questions for those that had/have paget's disease of the
 

Well, I'm in total shock honestly.
Biopsy was yesterday. It went fine and I asked to go ahead with MRI so I could just know everything
MRI was this morning and I have three masses in my right breast. One very deep almost to the vest wall, one just under my nipple, and one that looks like an intramammary lymph node.

Surgeon told me it's linear appearance looks consistent with DCIS. She said could be fibrous tissue blah blah but need biopsy to be sure. I said with my nipple changes I would think it's most likely the DCIS, she said the appearance is worrisome for that.

Of course I'm sure she didn't want to commit without biopsy. I understand that.
She ordered MRI and US guided biopsy and said radiology should call me in the AM to schedule.

I knew it was a big possibility but I'm really in shock. And scared.

Re: Questions for those that had/have paget's disease of the
 

I am so sorry. :(

Carol Ann

Re: Questions for those that had/have paget's disease of the
 

I'm sorry. It is frightening. Keep us posted and we will support you however we can.