Paget's breast cancer

When the dr. talked with me about the possibility of Paget's disease, I went to the Internet to google it.  I found that Paget's disease can often be an indicator of breast cancer under the nipple.  I was having nipple discharge and when my dr. examined me, he asked if I had noticed any change in the color of my nipple.  I had not because I had no idea I should even be looking at the coloring.  He said that sometimes that is a sign of Paget's disease, but not always. I had never heard of Paget's disease nor anything about cancer in the nipple.  I eventually had a surigcal biopsy with about half my nipple removed and a section under and to the side of my nipple.  I was diagnosed with grade 3 DCIS.  I chose to have a complete mastectomy so that I would not have to go through chemo, radiation, or other treatments.  I wanted to be as sure as possible that the cancer would be gone and I would live a long life.  I was 50 at the time and still have lots of living to do.  I had a very supportive husband and family. 

I hope everything goes well for you. 

Jan

Hi

I had blood from a little sore on my nipple and was told it could be pagets. yes its rare and even more so is that i am male. i had two biopsies and both showed no pagets but intermediate grade dcis. i had a mast and the final path report showed 7mm of dcis just in nipple nowhere else. thats why they first thought pagets.

i hope it turns out well for you. waiting is the worst part. our stories sound similar hence my post.

god bless

mark

I too was diagnosed with Paget's in Oct. 2007. It's been difficult finding others with this until now, I guess because it's so rare! I'm glad to have found this website and chat room to talk with others who have this. I had never heard of Paget's either. I knew something was'nt right when my nipple turned bright red and cracked opened and there was intense itching. The doctor did a punch biopsy which confirmed his suspicion of Paget's. My world turned upside down in an instant. It has been 2 months since my surgery and I am still healing, physically and emotionally. After much discussion and prayer I decided to have a mastectomy with reconstructive surgery. The cancer was non-invasive. I have had wonderful support from my family and friends but want to talk to others who have gone through this whether their journey be a new one, like mine, or a seasoned one. I look forward to talking to you.   

Hi Hannah,  I had my reconstructive surgery immediatey following the mastectomy. At first I was given the option by my surgeon I could either have a lumpectomy followed by radiation or a masectomy and not have chemo or radiation. I knew the masectomy was the right choice for me (and figured since I was going to lose my nipple and areola anyway....). It is shocking!! I know how you feel. My mammo came out clear, also in September! I had an MRI that came out clear, no tumors just that ugly Paget's. I'm only 2 months out from the surgery but would be glad to answer any more questions. You are in my prayers. It is such a blessing to have support!

Hi. I was dx w/DCIS 12/21/04 after finding a pea-sized lump myself and the initial path f/the biopsy showed non-invasion. I opted for mast and immed tram so I wouldn't need any further tx. However, my path following mast showed invasion and Paget's. My only symptom of Paget's was itching, which I'd had for some time but didn't know it was a "symptom" of anything, so I ignored it (!)... I don't know if one caused the other or not, but both were in need of treatment in my mind and I still feel I made the right decision for a mast. Hopefully you will get enough information and help from your doctors to make a decision that you are happy with. Good luck to you.

Received an Email today from a friend about Paget's Disease of the breast.  Never heard of the disease before but after reading the Email I almost fainted.  About two months ago, one of my breasts started to itch.  An itch that kept itching even after scratching.  It later became red and scaly.  Thought it was just eczema, like what I get on my eyelids, so blew it off.  But after reading the email, I again examined my breast and I still have the scaliness but it no longer is red and itchy.  I have an appointment with my Gynocologist today. Have this terrible gut feeling that that email was sent to me for a reason.  I had a normal mammogram back in November, so hopefully it's just eczema.

I agree with Hannah. Have it checked. I had Pagets on the left breast. My nipple would crack open and the itching was awful but then it would seem to heal which is typical of Pagets. Again, not to scare you, but definately have it looked at.

Hannah! So glad you're back on here so soon after your surgery. how are you?

Take it easy Hannah. Lap tops are good to have, would like one for myself.

Cathy, let us know how it goes. We're all here for each other.

Hi ladies,

I've been trying to find people who have (or had) Paget's because it's so hard to find information about very early signs of Paget's.  One of my areolas is slightly discolored in several areas (tannish instead of pink) and has dry skin with sometimes a little scaling. I've been to 3 doctors so far who have dismissed it; but unfortunately, I keep reading about the same thing happening to women who have Paget's.

Also, I'm finding that a lot of doctors don't know a lot about it since it's relatively rare or else they see it in advanced stages.

The nipple is not involved in my case, just the areola; but I've read in rare cases this could happen.

Thank you for any info you can give me.

Wishing you all the very best,

Mindy

Hi Hannahbanana!

Love your name!

Yes, I have gone to a dermatologist; however, he said he hadn't seen a case of Paget's in the 40 yrs. he's been in practice.  I had a mammogram last month, but my breasts are dense which causes me not to rely on mammograms that much. 

I have a 4th appointment Monday with a surgeon so we'll see what he says!

You mentioned that you also had psoriosis which is what you thought it was at first.  Did you also have any kind of skin irritation on your areola?  That's where mine is.

Glad to hear you're doing fine now!  Thanks so much for writing!

Mindy 

Hi all,

I too had Paget's and if not for that nipple problem would have not found 2mm IDC which though very tiny had shown up in micro-mets in the sentinal lymph node.  Radiologist told me (months later) that they see tons of little 'blips' like I had on my m'gram and usually just 'wait & watch' but because of the Paget's, they needled it.  I had a lumpectomy, ACT + Herceptin and rads.

 The thing that gets me is that STOOPID EMAIL that seems to keep circulating around.  It is absolutely full of outright lies, half-truths and the like.  Think about it--the email says there's this awful terrible NEWLY DISCOVERED breast cancer out there.  Then you do one quick Google and find out that Dr. Paget DIED in the late 1800's!  Particularly bad from my perspective is that the person who forwarded me this email works for a Big 10 Univeristy Medical Center in a large metro area where the employees seem to overwhelmingly have an attitude that they are the best, the brightest, the smartest and their fecal output smelleth not.  I told my best friend I'd do surgery myself on my kitchen table with a grapefruit spoon before I would allow anyone at that instituion to touch me.  BC is difficult enough; we don't need bad info continually passed around, especially by "the medical community."

Beth

Hi Hannah!  Good to hear from you, glad you're doing so well. I've been back at work & feeling some energy finally return. I had another little surgery in May ( some tissue had "died" in the recon breast) and will find out on the 16th when the "finishing touches" can happen.

Wondering about Mindy too.

Happy 4th everyone!

thank you ladies for all of your responses.  i am a nervous wreck. i have had so many things going on at once and then this hit. I am trying to get everything in order prior to surgery.  The bills need paid, work schedules need worked out, children need meals prepared in advance, groceries need bought, animals taken care of. and the list goes on.......

oh yeah and there is the shear exhaustion from trying to pull of this together that there is a part of me that is looking forward to being at the hospital tied down for a while just to rest.

help me ....please

heather