Paget's Disease of the Breast
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I received a call today that I did not have Paget's and that I am being referred to a dermatologist! What a relief that I do not have Paget's! However, I am still concerned about my health as there are things going on around and inside of my breast that are unexplained like sharp shooting pains, throbbing, itching on the inside and outside, a slight fever, pain in the shoulder area and under my armpit. I am very thankful Paget's was ruled out, but I am not convienced that something else isn't going on. It coul be an infection of some sort, but whatever it is, I do not like it and I want it to go away quickly. Bless all of you angels that are going through this. I can't imagine what you are going through. I wish all of you ladies who read this thread and are waiting, to stay positive. I was convienced that I had cancer, and thankfully I don't at this time! Be your own advocate though and always seek attention! Doctors are humans and make mistakes.
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So happy for you!
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Great news, so pleased for you.
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Great news, Lindsey!!
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My mammogram and ultrasound were normal today, and I know that's often the case. My nipple symptoms have cleared up and are barely noticeable, but not gone altogether. My plan is to watch it for another couple weeks and unless it's completely resolved (and why would it after all these months?) I'm seeing my dermatologist and asking for a biopsy. I'd just him to see it when it looks bad, but I have taken pictures I could show him. This way if it is Pagets, I wont be locked into a certain b/s surgeon and will have more flexibility to research and decide where I want to have surgery, if it comes to that. best. m
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That sounds a good plan Molly, they can't biopsy when nothing to see. Good news tests came back ok. Keep in touch.
Regards Lou.
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Great news, Lindsey!! Glad to hear it!
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Thank you all for the encouragment and congratulations!
Today I seen the dermatologist. It wasn't as comforting as I had hoped. She looked at my nipple for about 2 seconds and said she was giving me a stronger steroid cream to try. One week on 2xdaily one week off. Come back to see her in a month if not gone away. She said that she could do another biopsy because sometimes the pathologist misses the cells or the punch wasn't in the right area. I said I did not want to have another biopsy done just yet. She said that was fine and to follow up, but if it doesn't clear up, she was going to do another biopsy and test it two different ways.
I have to follow up with my PCP to get a referral to a new GYN. I do not like the one I am currently seeing. He always brushes me off and I don't like that. She said to check off boxes and see what they say about the pains as well and keep and eye on everything! I know something is going on in my body due to the pains I am having in the area, but not sure what yet. Hopefully I will get some answers about that soon and I hope the creams help heal this area! Especially since it is only on the right side!
Good to hear Mollyrose!
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At this point there's not much for my dermatologist to see as it's cleared up from my last flare...not 100% but I think he would think I'm being neurotic. I'd like to wait until it acts up again, I worry the biopsy might miss it. Ladies, when yours would come and go, do you remember how long it would stay inactive? Does it really clear up almost entirely and then come back? thanks
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Yes Molly, mine would look almost normal, panic over only to start again a few weeks later !!
Regards Lou.
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Hi there ladies, Looking for some advice. So after my dermatologist confirmed Pagets, she referred me to a general surgeon for testing. Long story short, this office is horrible at returning calls, timely information etc. Has anyone had to do this backwards in regards to mammogram, ultrasound, etc and just moved to an oncologist? I'm really frustrated with the lack of follow up from my diagnostics with the surgeon, and think I need better care to get this taken care of. I'm a month out from the initial diagnosis, and playing phone tag with the surgeon over ultrasound results ( during the ultrasound they told me nothing showed up)
Any advice is appreciated and sorry for the rant.. so frustrating.
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Oh, who frustrating. Can you call your derm back and tell them of the issue? Maybe they could recommend someone else? Or you may want to start off with an ONC, you'll need to see one anyway, and have them help you out with the surgery process. Things generally happen faster when one doctor talks to another,,,,
Best of luck.
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Hi I'm looking for advise on nipple reconstruction please, I got a letter today I'm having nipple reconstruction on Thursday I'm really looking forward to it lots of advise on here about nipple reconstruction but mostly its reconstruction from mastectomy. I had niple removed 3 cams of DCIS and 20 sessions of radiation, my breast Is said smaller than the other and looks square the dr is sorting the shape and doing the nipple then sorting the other side at a later date I'm looking for advise if it looks ok how long off work and does it look like a horror show I can't wait but I'm a bit worried now tbh any advise good or bad is welcome thanks
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Hi everyone, I've been meaning to update you. I've been so busy and distracted lately, I just haven't got around to it. I got no answers from the biopsy, my letter just said "this confirms an inflammation of the skin and no confirming abnormality as to causes for this inflammation." So I've been referred to Dermatology to get their advice, my appointment is 14th February. I'm just so disappointed that the biopsy showed nothing, I just feel like I'm still in the dark about what it is. If the biopsy has showed something, I would at least know, and not be worrying about what it could be. Hopefully the visit to Dermatology gives me some answers, although I have a feeling they'll just give me more steroid cream. My symptoms are clearing up again, similar to what mollyrose and lou said. The skin doesn't look as inflamed but it still feels strange. I don't know how to describe it, it sort of feels thicker than the skin around it and I still have a lot of pain and itching, did that happen with any of you ladies?
Hope you're all well, nic x
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So my punch biopsy came back as benign, they used the word inflammation. Once I knew, I told my siblings. One is married to an internist who asked me if ALL of the inflammation was removed in the biopsy and if not, how could they deem it benign? This is messing with my sense of relief! Is it common for a punch to miss the Pagets cells? I went to a very good surgeon at a great hospital! She said that while they weren't able to say what it was, the fact that the report did say inflammation and not just normal tissue was good because that told her that she didn't miss the mark in the punch.
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Hi Lou - I would like to confirm what you are discussing. Did you have Paget's with symptoms that would come and go? My symptoms are extreme itching, with redness, and a portion of the areola has swelling and is rough and dry. But then it seems to clear up, then flare up again. I saw the dermatologist many months ago, have tried several creams, had a 3D mammo and ultrasound, which showed nothing. I went to a new dermatologist yesterday and even though things looked fairly normal yesterday, she recommended a biopsy given the length of time this has been going on (over a year), and given a strong family history of breast cancer. Sometimes I think I am crazy, but luckily, I have been taking pictures and showed them to my dermatologist so she could see the flares. Everything I read says that Paget's progresses, but did you go from symptoms to no symptoms and back to symptons again? I have days without itching, then it flares again. Thanks!
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Molly I don't know how accurate they are, keep your eye on it.
Tracy yes my symptoms would come and go, good job you took photos.
Good luck with your biopsy, let us know how you get on.
Lou x
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Last July (2017) I noticed a slight discharge from my left nipple. Went to doc, antibiotics, no change. We were then in Scotland, came back home to Jamaica mid-August, went to my GP, swab showed bacteria, cream didn't help, another course of antibiotics, no change. It came and went, once in a while bloody, no real pain. He sent me to a surgeon who sent me for mammogram, ultrasound and scans which showed zip. Surgeon thought skin condition so when he took the precautionary biopsy he took off the nipple and made a new one, thinking that might just do the trick. Off I went back to Scotland. He phoned December 19, Paget's. Malignant. Shock. 17 family in the house so didn't tell anyone, to spoil Christmas. Came home Jan 10 focused on early op, I wanted a double mastectomy, having seen what radiation can do and not wanting to think about the 10% chance of it developing in the other breast. A week's delay as concern about my heart meant more tests so I swam 50 laps every day and cut out fats, sugars, starches. I am 73 and overweight so they would not do reconstruction at the same time, I will have to decide if I really want another procedure. On Feb 6 both breasts removed. I am home, having physio, waiting for the biopsy results and trying not to think scary thoughts. My demeanour has been confident, composed, even funny but I get these moments still of shock and panic and loss. Great to see how many others have dealt with this and thanks for posting.
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My scans and ultrasound were totally normal, NOTHING showed up. The excema covered a tiny centre bit of my always inverted nipple and the discharge came and went. Seven months and a double mastectomy and sentinel node removal, later, I STILL don't know if it was DCIS, invasive, HER2 or WHAT. Dunno if I am home free or must gear up for a fight. One thing I am certain of, anyone with anything peculiar on the nipple that dies not respond fairly promptly, get a wedge biopsy.
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Hi, sorry to hear you have also had Paget's the waiting is the worst , I have only had my left breast removed and no reconstruction I didn't want any more surgery as have already had alot over the last few years and also felt more chance of seeing if anything was going on again.I hope your recovery goes well and you don't have to wait too long for the results. Be careful and vigilant it is quite common to suffer with lymphoedema after a mastectomy, I have it in my arm and trunk.
Regards Lou.
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Hi Everyone. I have posted several times, I am so nervous. Had a punch biopsy on my areola (they did the rough, itchiest part) last Tuesday, they said the results could take up to two weeks. Of course, the itching and redness have gone away for now, but the swelling is still there. I know there could be several reasons for it taking long, but I am just concerned that they are having to do additional work to either determine what it is, or they are asking for another opinion. Gyn,derm and radiologist all said they didn't think it was Paget's, but the other derm that did the biopsy, who also doesn't think it's anything "really bad" said that it is definitely something. Thanks for listening.
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Hi Tracy, my biopsy results took 3 weeks it is terrible waiting, I hope it comes back soon and all is good. Keep us posted.
Lou x
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Thanks so much Lou, appreciate it.
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So let's see the hard evidence I do not believe this for one minute and it's not right posting things like this here on a cancer website
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Left Mast for me this Tuesday.. fingers crossed everything goes well
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Hi Josie, wishing you all the best for Tuesday x
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Thanks Lou! xxx
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Fishy.. my symptoms were the same. Clear mammo, ultrasound etc. I had 7CMs show up on the MRI, and will be having a mast tuesday. My BS categorized it as DCIS, unless something changes on pathology. I will also have sentinel nodes removed (3) Hope this helps
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I had a nipple reconstruction 5 weeks ago but the nipple is really starting to flatten Now I'm so,disappointed does anyone have experience of this can anything be done I assume not, the DR used my own skin to make it .im going back to him on Wednesday any advise welcome
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Hi Lorri, so sorry to hear that, I hope it all goes well for you today.
Regards Lou.
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