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Pagets breast cancer right nipple..anyone have it?

Posted by marybasaldella @tinamaria1, Mar 13 8:18am

In Dec 2025 I saw a bit of bleeding redness discharge in right nipple.

January 2026 ultra sound and mammogram negative for cancer.

A breast surgeon did a biopsy last week since it never heals, and pathology report says Paget's disease, BUT my nipple is NOT inverted, in fact it is completely erect larger, the opposite...weird.

I'm newly 60, an avid tennis instructor, runner, tennis player, fitness person, etc..now my life has stopped. Physical fitness and sports are all I know, all that really give me great joy to live.

I haven't met with my Breast Surgeon yet who 2 days ago told me on phone she would do a lumpectomy remove my nipple, with radiation, after looking at an MRI, which I had yesterday.

I haven't had my consult with her yet, she is not an oncologist. I heard Mayo Clinic was a leader in Paget's breast cancer treatment, as it is very rare, I am told. The other really good centers for rare brest cancers are in CA, TX, FL..too far for me since I live in MD.

My cancer according to the pathology report, is very aggressive, but supposedly Stage 0, growing fast.

I am getting a second opinion with another Breast Surgeon at John Hopkins, since I live in Maryland, about an hour from Baltimore.

I would welcome any questions I should ask my breast surgeons about surgery, ie. lumpectomy vs mastectomy, and treatment when I meet with them in next few weeks.

I don't have any family in Maryland and I am single, so feeling afraid and alone, and hope to join a support group here.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

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caredwards33 | @caredwards33 | Mar 13 9:49am

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.

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betty009 | @betty009 | Mar 13 10:45am

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

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marybasaldella | @tinamaria1 | Mar 13 11:05am
In reply to @caredwards33 "I had Pagets Disease in my right breast 17 years ago. There also was DISC stage..." + (show)
Profile picture for caredwards33 @caredwards33

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.

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@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

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marybasaldella | @tinamaria1 | Mar 13 11:08am
In reply to @betty009 "Yes I have been diagnosed with pagets last year. I did have a lumpectomy to remove..." + (show)
Profile picture for betty009 @betty009

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

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@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?

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tillymack | @tillymack | Mar 13 3:53pm

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.

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marybasaldella | @tinamaria1 | Mar 13 4:42pm

Thank you will do!

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betty009 | @betty009 | Mar 13 4:44pm
In reply to @tinamaria1 "@betty009 thank you for reply, glad all is well with you...btw did you know if it..." + (show)
Profile picture for marybasaldella @tinamaria1

@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?

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@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.

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