Paget's Disease of the Breast

hi. I have been reading this with great interest. I can't remember when I first noticed my itchy left nipple, maybe last spring. It's wasn't much at first, thought maybe it was my bra. It would come and go. Then this winter I got worried and did an internet search. I got scared, but then it got better again. In February it started itching and burning so bad I wanted to rip it off. I live in the northern climate and I'd put it up to the cold window for relief. I then started putting some lotion on a makeup cotton pad and putting it in my bra. The cooling relieved it some. I loved when I could get home and take off my clothes, the restriction on the bra seemed to make it worse. I would do anything to try to itch it without people noticing. There is no crusting or nipple flattening or a lump but there is a little spot at 1:00 that is more red then the rest. When I compare my nipple to the other it looks the same except it doesn't have the "ring" around the center since it has that rash like small spot. So I made a Dr appt. and went on Wed. She referred me to the breast center and I had an appointment for this coming Monday. But I had to postpone it a week since I can't get off work. Ironic since I'm a surgical nurse and work in the hospital. I have to take care of others but I can't get off work to take care of myself. *sigh*. My Dr. said I can't let it go another month. My maternal aunt had breast cancer and also my paternal great grandmother. I don't know about my paternal grandmother as she died of MS at age 39. I've had regular mammograms, with my last one being this past summer, but I got a letter stating I have dense breasts so MRI's would be better. I just turned 47. I've had one child who is 20, pregnant 4 times, losing the others to miscarriage and ectopic pregnancy.

I wish I would not have to wait another week to see the Dr. Did any of you experience the on and off itching? Right now it's not bothering me, in fact I though about canceling my appt last week. But I'm sure it will come back as it has in the past.

Any thoughts or sharing of early symptoms would be appreciated.

Thanks, Stasia

Thanks Lou: I too have let it go far to long.......breast cancer runs no where in either side of my family, which we are all finding very curious.....fingers crossed for you...Monday, right? Plz let me know, I go Tues at 2:30pm....Have a blessed day

Hi, good news for me, MRI showed no other cancer so having a wide local excision next Wednesday and go from there. Catherine I hope you get good results tomorrow, and Glennie I hope your tests went well and results are good.

well, the itchy nipple came back again with a vengeance. So glad I did not cancel my appt with the dr last week! I'm almost positive I have Paget's in the early stages. So weird it comes back and it's always in the left nipple. I will have such relief when I meet with the dr next week. I hope they can do the consult and testing all in one day.

oh no, Lou!  So sorry to hear this. Hope this clears up quickly.

I saw a surgeon today and she felt it was dermatitis as the rash wasn't very noticable to her and she said Pagets would have my nipple more decomposed. She prescribed me some 2.5% cortisone cream and sent me to ultrasound and 3D mammogram. The radiologist looked at them, did his own ultrasound and told me it's clear. So I'm to use the cream for 2 weeks to see if it clears up. If it doesn't then she will consider a biopsy. I'm relieved, but i know from the above posts that sometimes the ultrasounds and mammograms can miss Pagets.

Glennie: I was so excited to know I was clear, but then I also know that Pagets can be missed. Some of the photos on the internet of early Pagets look like mine. I also hope the radiologist was good. I'm still really uneasy, but I need to relax, I have freaked myself out over this for weeks. Tonight I spent all evening reading this whole forum again! We have a very busy April so I'll keep on the cream for 2 weeks, then off and see what happens. If it comes back ill schedule a biopsy. I just need to breathe. Hugs to all on here and thanks so much for the information!

Stasia

Hi all I am out of hospital and hoping they will do my surgery on Thursday as planned , but I am still on antibiotics so its debatable.Stasiam good news but like Glennie says the only way to test for Paget's is biopsy. My mammogram ultrasound and MRI were ok, and I also had not got a decomposed nipple. If the cream doesn't work you must go back, better to be safe than sorry. Hope all goes well for you.

Lou. Hoping all goes well for you.take time for yourself. Will be thinking of you.

Hi. I just joined today, March 25, 2015. Tomorrow it will be a year that I was diagnosed with Paget's. All of you are right--it is a rare cancer and a very sneaky one, at that.

I also had an adenoma on my left breast which had to be excised as well.

My journey through all of this has been convoluted...I was diagnosed with Paget's on my right breast and then had a biopsy of my left for the adenoma. I was sent to a surgeon who proceeded to tell me it was basically skin cancer and she would take care of it. I asked her if I needed an oncologist and she said not now. She did send me for an ultrasound guided biopsy on the left breast. I left her office rather confused and worried. .I had my lumpectomies on both breasts on April 28 and two days later, the surgeon called with the news that they did not get to clear margins for the adenoma and by the way, path showed I had DCIS in my right breast where the Paget's was. We were stunned...no mammo or ultra had found the DCIS...not until they cut on me did they find it. So--now I went to the oncologist and had a flurry of tests...the surgeon had told me it would be another lumpectomy and then more excision on the the left. But, thanks to the onco...I had an MRI which found multi-focal DCIS, and then a stereo-tactic mammogram--my DCIS was high grade and multi-focal, and necrotic and grade 3. I had to have a mastectomy...

I am still dealing with the emotional piece of all this...and now I am thinking how will I know if I have DCIS in the other breast? Since neither a mammogram, biopsy, or ultra-sound found the DCIS in my right breast...how will I know?

Modbod:  calcifications can be a sign of DCIS and they show up on mammogram.  Now that you have had DCIS in one breast,, they should be very careful to look for calcifications in the other one.   And I vote for trying to get yearly MRI's too. I get my mammo once a year and 6 months later I get the MRI,, so every 6 months I get one or the other. I am less than 2 years out,, so not sure how long this will continue.

Fingers crossed for you, Lou,, but geeeez, that's a long time to wait.  Can't they see you next week?

ahhhhh, got you.. I've heard that from others in the UK too.  Hang in there!!

My BS dismissed my concerns about LE too. I got my MO to send me for LE therapy.  Dang, you have had a rough go.  I hope you can find some more supportive medical people.

((((Mommyduck))))   Wow, you have had a rough road, losing hubby and brother.  I am hoping for your sake that it is not Pagets or any other cancer. But I can see you are the type of person who wants to plan for the unexpected. Can't blame you there. I am the same way.  

This is not the time to be shy.  Reach out to friends, neighbors, your church,, your hubby's former co-workers, your children's friends' parents.  Is there a local BC support group? Try to make a list of who could help with what.  Who could baby-sit?  Who could bring food?  Who could drive you to appt's?  etc, etc.  People want to help,, give them a task!  Will your insurance cover a nursing assistant to come for a few visits to help with things?  Can you hire a housekeeper (even if temporary) to do the house cleaning while you are out of commission?  Lots to think about,,,

I think there is a thread under the surgery section about making preparations,,,, you may want to look over there for more ideas.  Hang it there,, and please keep us posted.

glennie         found one thread:   https://community.breastcancer.org/forum/91/topic/699896?page=26#idx_751