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Paget's' Disease

9 REPLIES 9
JanetM25
Member

Re: Paget's' Disease

Mine was discovered the same way as a red irritated area around the nipple with scaling of skin and it wouldn't go away. I am 57 and I had a lift and breast implants in 2019. I didn't go big and just wanted them to be firm and balanced. So now I am trying to decide if I should have the other breast nipple removed now. The right side had surgery and radiation. Now am I crazy for wanting breasts to be the same? My husband doesn't care about the nipples. Has anyone else made this choice?

JanetM25
Member

Re: Paget's' Disease

I found out about Padgets disease of the breast when I was diagnosed in Oct 2021. No family history of breast cancer so I was completely shocked. Based on being in-situ and stage 0, I followed the doctors advice and had the surgery on the right to remove the nipple, margins and 2 lymph nodes in November. In December I had 20 sessions of radiation. Now I am recovering as my breast is very red and my incision is irritated. I thought it would heal faster but after the radiation was completed it got worse and I wish they would have told me this. Anyone else have this experience? Apparently it takes another 2 weeks so I still have to be careful with my bras and apply aloe gel alot.

Gotthard
Member

Re: Paget's' Disease

I have my sister facing the same issue, and it's great to see how most of you managed to deal with the condition. I'm actually feeling grateful that she was able to consult with the doctor online thanks to a cloud based medical service that we found available through a Google search. She was always feeling very nervous to visit any doctor for that kind of condition. So for me, as her only sister and only sibling on this planet meant a lot to see her progress as well. I think you could also benefit from an online consultation, if you have a person that is not willing to take that step off visiting a practitioner in the office.

MaddyW52
Member

Re: Paget's' Disease

I've only recently rejoined this support group - and discovered that your description of Paget's symptoms is exactly how I would have described mine. I'm currently 66 so your story has struck a nerve. I do hope that you're now totally recovered from your surgery and would love to hear updates on your condition. Xxxx I'm  considering a double mastectomy (only one breast affected..same one as had DCIS 11 years ago) and my husband and I are extremely relaxed about the decision..Looking forward to my new wardrobe post surgery. 😋

Collywobbled
Member

Re: Paget's' Disease

Hi everyone. I am an Aussie who had a mammogram that showed DCIS. When I visited the surgeon, she asked if I had any other symptoms. I told her about changes to my nipple that 2 doctors told me was dermatitis and nothing to worry about. The nipple was kind of dimpled, and starting to slowly invert. When showering of a morning I would dry myself and put,bra on. Of a night I would take bra off and it pulled the top off this dry patch making a scab. Other than that there was no discharge itchiness or anything. Surgeon had a look and thought maybe dermatitis, but as I hadn't suffered from that condition before, that she would do a biopsy. This turned out to be Pagets. One month on, I have had a mastectomy with no reconstruction (I'm 66). I sailed through the op, and 2 weeks later can honestly say that I have had no pain. My scar is very neat. When getting results 2 days ago, I was informed that there was a mass approx the size of areola under nipple that, as it did not contain calcium did not show on mammogram.
The good news for me was that the cancer had not spread to lymph nodes and no further treatment was needed. I am forever grateful to my wonderful surgeon who recommended and performed the mastectomy.
I don't have a problem with loss of breast ........it saved my life. I also don't have body image problems....if anyone has a problem, it is their problem, not mine, and I don't need these "friends" around me because I had 2 breasts!
Fuffs123
Member

Re: Paget's' Disease

Hi Rebecca

Sorry for the delay in replying, Xmas got in the way! It was only the actual nipple that was affected. It was a scaly type thing which kept sloughing off and then the nipple would bleed. It would then crust over again and then fall off and bleed again. As it was the same breast that I had had 3 previous lumpectomies on and 25 rads, onc and I agreed that we would go straight to mastectomy rather than nipple removal. The nodes were biopsied again and no spread, relief. Are you worried about a similar thing on your nipple?
Rj7777
Member

Re: Paget's' Disease

Hi fuffs123

I know this thread is from a while ago now but I just wanted to ask what did you Paget’s rash look like? How like eczema was it and did it cover the nipple? Hope your surgery and any subsequent treatment went well. Thanks Rebecca
Fuffs123
Member

Re: Paget's' Disease

Hi Ann

Thank you for your reply. Didn't think I'd be back on this forum again! I have another appt with surgeon next Friday so will ask some of the questions I forgot to last time. Same old, your mind goes blank when you get your diagnosis.
ann-m
Community Champion

Re: Paget's' Disease

Hi fuffs123,
I dont have your diagnosis, but sorry to hear you're back in treatment again.
From what you say, there is no reason why this should not be sorted out by the treatment proposed, but it's still a shock & something else for you & your family to get your heads around.
ann x
Fuffs123
Member

Paget's' Disease

I've just been diagnosed with a recurrence of BC and biopsy has shown it to be Paget's disease this time. Has anyone had this diagnosis? I had 3 lumpectomies and 25 sessions of rads in 2015 but no chemo, as it hadn't spread to my nodes. They've said I need a mastectomy now which I expected. Feeling very down and scared, waiting to see the result of another mammogram. Dreading telling my daughter who lives in London and my OH is in bits, although very supportive.