Pagets breast cancer right nipple..anyone have it?

I had Pagets Disease in my right breast 17 years ago. There also was DISC stage 0. They recommended mastectomy, which I had. I recently had 2invasive carcinomas in left breast. They did what was called partial mastectomy since they took both tumors at once and did some reconstruction. If you can have nipple removed since no other cancer, especially since you are active, I would make that choice. I was 62 when I had mastectomy and reconstruction. When they did procedure to "make" nipple, it left large scar tissue that made breast misshapen. Of course, a lot has improved in procedures since then. Just sharing what I would do.

Yes I have been diagnosed with pagets last year. I did have a lumpectomy to remove another cancer in the breast at same time I was also in stage 1. Everything is going well. I had chemo as well as radiation. It is a rare one. Heard it could be connected to hormone therapy. Wish you the best. L

@caredwards33 thank you so very much, this IS helpful information about what to expect, and thank you for advice, wishing you the lots of joy and peace ahead

@betty009 thank you for reply, glad all is well with you...btw did you know if it makes a difference regarding the having a breast surgeon with a lot of experience with paget's ? or does the surgery itself not matter if the surgeon has a lot of experience doing surgery for paget's? same question about treatment?

Since Paget's is rare and aggressive, my recommendation would be to see at least 3 of the best surgeons who specialize in this type of breast cancer regardless of the location. Do lots of research on the surgeons as well as the medical centers specializing in cancer.

Thank you will do!

@tinamaria1
Once I had a diagnose I was fortunate to have an oncology surgeon. I did not get a second opinion. I felt it was better to remove the nipple as quickly as possible, to prevent spreading. Time will tell if that was a good decision.

What did you end up doing? I’m recently diagnosed and saw a whole cancer team that discussed my diagnoses and made a plan. Had an MRI and surgery soon to remove my nipple.

So it’s mim09 again my email wasn’t cooperating a minute ago … If you need help finding additional resources in Baltimore like where to stay, church, a friend, private message me and I would be more than honored to help out. I was recently old to “pay it forward.” Perhaps YOU are MY “forward.”

I was born/raised in Baltimore. Johns Hopkins is the gold standard along with Mayo. I lived in SC when my 1st BG was diagnosed in 2002, in Philly when I was re-diagnosed in 2024.
My suggestion is to read (nothing before 5-10 yrs ago though) and google everything you can get your hands on. Get a 2nd, 5th, 10th opinion if necessary to have every concern of yours answered.
As a single woman who’s gotten this far on your own 2 feet, you are incredibly strong and can do anything necessary to advance your health. But also lean on a good friend or two to emote to when you need it. Pray if that is your bent or meditate. I have a spiritual advisor, a priest who I’ve known since 1994; we talk weekly…well to be truthful he mostly listens!
All of us in this BC sisterhood are with you in spirit!!!! And I think Hopkins’ social workers can help you find a reasonably priced (?) place to stay if needed.