Paget's Disease of the Breast

It feels funny to "welcome" someone based on something like cancer, but welcome to this thread! I'm new myself.

It's good that you caught it, since that's all it was. My story is nearly completely opposite - mine was in NO WAY normal looking, but I still tried to convince myself it wasn't cancer up until I received the diagnosis. My tumor, though large, did not show up on mammograms, ultrasound, or MRI, so in a sense I'm glad the abnormalities alerted me, so at least I could get it taken care of.

Hope everything goes great for you, and it's nice to "meet" you.

Thanks for the welcome, it's comforting to be able to talk to people who KNOW.

I'm actually considering having both nipples removed next week. Both as a preventative and for symmetry reasons. I have E cup breasts and large nipples, so am concerned about the difference in size after the removal. I'd rather have no nipples and fairly similar breasts than one nipple and also be lopsided.... I've emailed the Nurse but the Dr can't get back to me until Tuesday so I don't even know if he'd do it. Thoughts?

If it were me, and with my procedure, I'd ask the doctor about shape after surgery. I was told mine would not change much, but the breast with the surgery has a very different shape. I'm glad to have one "normal" breast, and wouldn't want them to look both like the "bad" side. Round, with or without nipple, in any size, would be preferable to me over what I've been left with.

As far as being prophylactic, I would want to know the likelihood of ever having the Paget's on the other side in the first place in order to decide. And of course, mine WAS the indicator of cancer. Without it, I'd still have a 4mm tumor growing inside that no one knew about. I can understand why you'd feel the opposite. In fact, all the worrying over any tiny nipple change might be more stressful for you than it's worth.

No answers, I know, but that would be my thought process. I hope it goes well, whatever you decide!

It's all such a big decision to make! I could also have a mastectomy, my Dr would prefer to do it one at a time, but with two small kids on my own I'm not sure how I'd handle the recovery. And would I choose to go back after knowing what recovery is like? I have decent family support, but I just don't know! I wish someone else could just make the decision for me lol.

Hello Suz, I agree with Lou, it is a big decision. I went for the mastectomy of my left breast despite not having any underlying tumor. I'm a single mother and was not interested in looking over my shoulder 2, 3, 4 years from now wondering if it would come back. Additionally, electing the mastectomy spared me from chemo and/or radiation. Fortunately for me, the lymph nodes were clear although there was underlying DCIS in the pathology. My doctor said I overtreated but that she would've done the same thing. I'm in the middle of reconstruction now with my next surgery scheduled in December 2016. The initial surgery for me was uncomplicated and relatively uneventful. The recovery was not nearly as bad as I thought it would be but, to be fair, I was distracted by my mother (who lives with me) being diagnosed with brain cancer 2 weeks after I was diagnosed. I think my focusing on her could have been oddly helpful in me not acknowledging my own discomfort. For whatever the reason, I was fortunate to have such a smooth recovery. In the end, you need to do what's best for you. My advice is to talk to your doctor, your nurse, your family, close friends - hash out all your concerns and fears. Don't hesitate to ask questions and advocate for yourself.

I was diagnosed with Paget's disease on 14th September, had been to breast care centre dr said looked like ezcema did a biopsy and 2 weeks later I went back he told me it looked like Paget's was suspicious but he couldn't be sure of this I was alone and devastated he did another biopsy with a larger piece next morning I had a mammogram and ultra sound all clear. I am devastatedbut I'm really not dealing well with this, I have loving husband 3 kids family friends but I'm really not coping does it get easier does it just take time??I'm having next diagnosis this Wednesday dreading it, but I've kind of decided on mastectomy reconstruction as I'm terrified of having treatment

I could use some advice. In late March of this year I begin having redness and scaling on my right areola (right below the nipple). My derm recommended a steroid cream. This will often help and stop the flaking/scaling but it usually remains somewhat red. The nipple is not involved and the other breast is fine. The flaking and scaling then returns about a week later after I stop using the steroid cream. This has been going on for about 7 months. I had a punch biopsy completed and that came back as dermatitis. My concern is that it keeps returning and that the punch biopsy was somewhat away from where this keeps happening. Has anyone ever had a negative biopsy but it did turn out to be Paget's? Of course, my doctors all keep blowing me off because of the negative biopsy, I am just concerned that it hasn't gone away and that it missed something. Also, how long did everyone have symptoms before a diagnosis? Any advice would be greatly appreciated. Thank you all!

I don't know I'm the opposite I was diagnosed with Paget's 2 weeks ago, well not conclusive of Paget's suspicious of being Paget's I'd another biopsy and I'm getting the results wednesday I'm praying mine was wrong but I know it won't be wrong he did it to confirm it, (has anyone had biopsy that's been wrong)I noticed my rash on aerola only at Christmas I thought it was bubble bath I received for Christmas but didn't clear even after stopping it went dr as my aunt got sick in her 70s went to hospital died of liver cancer 6weeks later never drank or smoked so I went dr said fungus and sent to breast clinical said ezcema but 2 weeks later diagnosed with being suspicious of Paget's I'm devastated

momto2girls, I would seek a second test. Better safe than sorry, follow your heart, they kept saying how unlikely mine would be. I was not surprised when it came back posotive.

Good luck

Lou.

Lorri, it did get better for me. The waiting for me wasn't really that bad, because I had convinced myself (with the help of the nurses at the imaging center) that it wasn't Paget's, and also I have a skin condition which confuses things AND I had had identical symptoms on the other breast some years before, lasting about 7 months, which cleared up and never came back. But the diagnosis was devastating. I felt like I was in shock, went out to my car and just sat and cried for a while. Starting to read and learn about it helped a little, but that can be overwhelming too. "Getting ready" for treatment, cooking foods in advance, finding clothes to wear after, and all that gave me more a feeling of control and like I was actually doing something - that helped a lot. Talking to a couple of people helped. And finally starting treatment helped. Now I'm healed from surgery, undergoing radiation, impatient with my limitations, and just want to get on with my life. Focusing on positive things helps a lot. Paget's is so slow-progressing, and mine had not metastasized, so this might sound not-right, but compared to some other kinds of cancer - well, I've watched family members and close friends go through horrible cancers, and Paget's alone is not as bad as what I've seen, so I'm thankful for that.

I'm not sure if that helps, and I'm sure everyone is different, but it can certainly get better - much better.

so I'm still in limbo went to dr today he said haven't bad news, then siaid had no news and will take 3 days maybe a week maybe send to higher pathologist in another hospital said all other tests are ok asked if I'd used Steroid cream I said not really suggested doing that and going to a dermatologist my husband wasn't happy so he said ok we'll leave that asked would I like a pwrscription as I was very anxious said he'd give me Xanex I was shocked prescription for steroid cream also and off I went they will call me when results are in

so I've been diagnosed with Paget's the dr rang me just as I was leaving work, he said positive for Paget's n something else can't remember what he said I asked was it dcis he said yes I was shocked to say the least, I've. To go see him again tomorrow afternoon, I assume to arrange surgery I'm devastated, this has been dragging on for weeks I assume I'll have radiation from what I've. Read, but at the end of the day it's cancer

thanks I know I'm worried that in few years time I'll get cancer again you know the way that that happens, that I'll have cancer on going forever I am 46 in 2 weeks and it's stupid I'm worrying what I'm gonna look after surgery no nipple n my breast way smaller than the other one I think mastectomy would be better is it like a big gaping hole?

Glennie,thanks for that article about dcis ,it's very interesting I'm seeing dr today @3 I will update later and I'll have the questions for the dr I'm not in the US I'm in Ireland so hopefully our technology is as good as yours thank you.

Hi Lorri, that's good not having to wait too long. Hope all goes well for you, I think some have a tattoo done to replace the nipple.

Keep it touch.

Lou.