Paget's Disease of the Breast
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Hi, sorry to hear your story you must be very worried. It does sound like the symptoms that I had but only in my left breast., I was also told it would be very rare to have Pagets in both breasts especially at the same time. Mine didn't show up with a mamagram nor a MRI. The biopsy came back positive and I think you will find most people with pagets it was diagnosed this way.Wishing you good luck next week let's hope it's nothing serious. Try not to worry , I know this is easier said than done.
Lou.
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xxbunksxx, I'm sorry to hear this, I'm only recently diagnoised having surgery next week, I've Paget's in left breast only I didnt have any discharge slight itching not bothering me really small redness on side of aerola not whole thing or on nipple only but very red and angry looking but the area is spreading now I can see and it didn't get better noticed round Christmas,I was diagnoised from biopsy actually I'd 2 to be sure mammogram and ultra sound clear, have you had a biopsy to confirm it I believe that's the only way to confirm it.
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Thank you for taking the time to read and respond. No biopsy yet. Originally, my surgery was scheduled for tomorrow but has been put on hold with both sides being effected. It's just odd to me that the left side has been effected for 6 months prior to right side showing a single thing. I know the biopsy is only way to diagnose Pagets and am hopeful that my drs will still end up doing on both sides. I think it'll be the only way I can be at ease. This is very scary being nearly 32 with small children. I just want answers and quickly. If only the medical world worked that way:)
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Hi xxbunkxx, this is such a frustrating time before you get answers. The tests are the most stressful part of this whole thing. It sounds like you're getting really good medical care. MRIs are more sensitive than ultrasound and mammos, so that will be useful, and it sounds like your surgeon will still do a biopsy if the MRI shows no tumors.
It's really good news that your tests so far have been negative. If there was an invasive underlying cancer, it probably would show on the ultrasound. This means even if you did turn out to have Pagets, by itself it is stage 0 and can't spread outside of the area where it is.
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well the time has almost come I'm having a wle tomorrow morning nipple removal I really wish it didn't have to happen but it does I'm feeling ok I really want this out now. I was having pre op in hospital bloods done and all those things today there is cancer counselling there so I called in there before I left they were very helpful my dr also called me this evening she is my age more or less and had breast cancer I am still dreading that they might not get clear margin and what else they might find my dr told me I'll need 6-12 months off as well as psychologically I'll need it I was thinking I'd be going back in January 🙁Is that the norm
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6-12 months off? Off work? Wow, things are different in Ireland. I was back at work 4 weeks after my mastectomy, but I have a desk job. Do you have a physically active job?
Will be thinking of you tomorrow. Please let us know how you are doing when you can.
glennie
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yes I think things might be different over here that's why the country's in such a state, tbh I think that's a bit excessive for me to need 6-12 months off work, my dr herself had breast cancer and I know she came back and had to leave again, Maybe that's why she said that to me i won't take that much time, I also have a desk job.
My operation went well it was a full on day left at 630 hospitals an hour away had operation I was very upset in the room where they put you to sleep the nurse said to focus on reason I was having the operation.dr said it went well removed nipple did a cone biopsy please God it's all removed go back to him in 2 weeks waiting again I got home at 730 had tea and toast went to bed see bit sore today bit tired but ok
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Glad the operation went well, and that you are home. Hope the time flies by for your postop checkup and you have clean margins.
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Yes glad you have had the operation, fingers crossed you on having clean margin. I had a week off work after nipple removed but a month after masectomy, but to be honest I should have took longer. Let us know how you go on.
All the best
Lou.
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Hi everyone. Well I had my Lumpectomy and nipple removed and SNB. Results came IDC 1.3cm with clear margins. No node involvement. BUT I have 10+cm of dcis that was connected to the Pagets still humming away in there. I opted for a DMX booked this Friday, but I'm having doubts. It was suggested I might be able to delay the mastectomy and do chemo first. I would have time to consider my options more.
But today I'm concerned the Pagets is popping up on my skin. I have a sore right near the incision where my nipple was. There was a hair there which has disappeared but it's not just ingrown, it feels like my pagets symptoms.
I'm waiting to talk to the oncologists but I probably can't get onto him before surgery.
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You should have someone look at the incission, just to make sure it's not infection causing the symptoms.
Pagets ist more often Her2+ than not. If that is the case you will most likely be offered chemo and antibodies. And if you do chemo it makes sense to do it before further surgery because then you can see if it works.
They just removed sentinels before my chemo. My affected nipple stopped weeping and the surrounding skin healed right after the first cycle.
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Hi, After my lumpectomy I knew that my pagets was still there. It was showing on my incision. I told the doctor before he told me they hadn't got a clean margin. Hope all goes well for you. I had mx but needed no chemo or radiotherapy.
Good luck
Lou
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oh no are you serious I assumed the Paget's goes as soon as the nipple is gone I can't believe it can be still there when the nipples been removed, I had my operation on Thursday I didn't know it could still remain I asked my dr was Paget's gone now nipple was removed he said yes I was worrying about the dcis not being all gone I've to wait 2 weeks
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No unfortunately it's rare but Pagets can still be there. Sorry. My specialist thought it couldn't happen also, fingers crossed you are ok, mine actually didn't show a clean margin.
Lou.
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I just feel like throwing in the towel, I can't believe you have nipple re,over and it may still be present. My dr told me he removed a large area all around my nipple so I hope he removed enough, I was thinking maybe the dcis would still be there suz1975 maybe it's an infection fingers crossed this really is a night mare it just gets worse
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lorri, if you had clean margins it should be fine, mine hadn't.See your doctor to see if its an infection asap.
Lou.
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I don't think he took enough... i need to read mu lab results to check, but I'm on antibiotics now to see if that helps. I'm getting really pissed off that I wasn't offered to see an oncologist before surgery. I know surgery first seems to be standard practice here, but from everything I've read it seems that chemo before surgery is a good option. I'm now left with a smaller breast and no nipple, and possibly still pagets eating at my skin. At the very least I'll end up removing the other nipple and a reduction on the other side, if not a double mastectomy.
We should be given choices and options beyond surgery right from the get go. I may choose mastectomy, but it should be my choice. I was given no time to reflect or talk to an oncologist, just told we need to cut. The psychological effect of removing parts of us that we can never regain is massive. If the tables were turned and men didn't have to cut off their balls they definitely wouldn't jump straight to surgery like we're hearded into doing.
I'm ranting now sorry.
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I haven't seen anyone else either except the breast DR,I've 2 more weeks to wait for results maybe longer as it's taken really long for diagnosis in the first place,my breast feels bit tingly as well but I think it's the healing process I hope so anyway, I'm still in shock to hear Paget's can still be present when your nipples gone,this is taking over everything it's my birthday today and I couldn't care less tbh,I too asked if I'd be better having a mastectomy for cosmetic reasons big slice gone my dr said no so I'm just going with that for the moment till results come back it's tough isn't it
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Lori I'd suggest you ask for an oncology referral before making any further decisions. A few weeks isn't going to change anything. Mastectomy is a big step. I wish I had gone to my gp and demanded it earlier. Listen to your gut instinct and good luck.
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Yes Suz1975,I'm not making any decisions, I've to wait for the tests to come back I think next week I'm praying for clear margins today I seem to be fine almost back to normal apart from tired had visitors all day. I'll be glad when I've had my results back hopefully just radiation no more surgery.
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MRI results came in and the nurse said left side shows inflammation of tissue mass on and surrounding nipple area. I'm set up next week with breast surgeon next week to discuss what the next course of action will be. Anyone else's MRI show this?
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just wanted to share I looked at my breast this evening it was what I was so dreading the first look,I'd mentally prepared myself I'd been looking at breasts with no nipples for weeks to prepare myself I was in bits about the first look but I'm very happy it wasn't bad actually I'm very happy the scar is whole way across but it's very neat it's a bit puckered on each end but I know that fixes itself after a few months cause 20 years ago I'd a lump removed was puckered at each end was small scar now it's not even visible.its only done a week no brusing my dr told me he'd do a neat job and that's exactly what he did just need clear margins now and I'll be absolutely delighted
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I met again with the breast surgeon to discuss the next step. I am scheduled to have a wedge biopsy on both sides next week. Has anyone had? I'll be under general anesthesia. How painful was the aftermath and what was your scarring like? How long until you were called with results? Thanks ladies
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Hi, mine was done with local anaesthetic and was very painful at the time. Uncomfortable after but no pain. Didn't look that bad after and took 3 weeks for the results. Hope all goes well for you.
Lou.
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I got my results today good and bad news Paget's gone butdidnt get clear margins tiny bit of dcis left he said 3 cm in there just tiny bit left having another operation in 2 weeks I'm happy nothing nasty was found and that I'm almost clear
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wishing you well for your next op.
Keep us posted
Xx
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Yes, best of luck Lorri!
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just wanted to update my DR called this Evening and we got clear margins I'm so so happy, I will be going down to see him on Wednesday to talk about radiation and the next step I am delighted everything's been on hold I can now start planning for Christmas
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Brilliant news, so pleased for you Lori.
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Good news Lorri!! YAY!!
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