Paget's Disease of the Breast
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ilaam: please be aware, that my cancer did NOT show up at all on mammogram or ultrasound or MRI. Yet, I had Paget's and underlying DCIS. After you have the mammogram and ultrasound done, please confirm with the doctor exactly what will happen. I am NOT trying to scare you,,, I just do not want you to get the brush-off because "you are young". Paget's is rare. Period. Even more rare at your age, but there could still be something else underlying, even at your age. I just want you to get the standard treatment,, and it is very clear,,,, either lumpectomy (with clear margins) with radiation,,,, OR mastectomy.
I hope it is all you have too. Please check back and keep us posted.
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Ok I'll let you know.. You're absolutely right but the tissue that will be removed from the nipple and areola isn't enough to see if there's something else ? I mean this can be discovered only with mastectomy ?
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If there is something else,,, hopefully the mammogram and ultrasound will show it,,, but it might not. You do not necessarily need a mastectomy. But if you have only the nipple and areola removed,, the standard of care is to have radiation,,, just in case there are stray cancer cells hanging out,,,,
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ok thank you.. I'll keep you updated
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Glennie is spot-on with her advice. I just recently was diagnosed, and I had high grade DCIS underlying. I believe the stats are 97% of the time with Paget's there is either DCIS or IDC. Luckily, mine was DCIS which is not invasive. I still chose Bilateral Mastectomies...cause I didn't wanna mess around with radiation or recurrence or new BC on the other side. Best of luck to you ilaam!
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Thank you lesssharp for sharing your experience. I believe those stats are true. I find them every where. I just don't know why my doctor told me that, for young women, the opposite is true and that it is rare to find an underlying cancer. He said those stats are true for older women. Although I trust him, I searched a lot on internet to find that info but found nothing. Maybe he speaks about only cases he had treated.
Anyway, I'm still waiting and hope you recover very soon!
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I just finished my doctors appointment and my gyno is scheduling me an ultrasound and then if it's clear wants me to schedule an appointment with a dermatologist. She said it's not adding up and she really doesn't know since the cortisone didn't do much at all. Still peeling, still lighter in color and looks different than the othe
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Hope you get some answers soon, Jess.
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Hi, Im glad I have found this site, I was feeling very alone, so worried and scared.
My family have a high breast cancer rate and to be honest a high cancer rate in general. I go to the genetics clinic every 3 years and in between that the over 50s check up. Im nearly 55.
About 3 weeks ago I noticed my nipple looked odd on my right breast, the top has gone white with a brown spot in the middle, and on the outside of the nipple it has gone a funny grey colour, initially I thought I was imagining it and because it was coming up tp Christmas and I was really busy I decided to put E45 on it and to make and appointment after Christmas. But of course I started looking symptoms up on the internet and pagets came up!
By now I was getting really worried so I made an appointment for Christmas eve. The doctor said I had to use the fungal cream she prescribed me for two weeks, and to see her again in January. If it has not had any effect then she will refer me to the breast clinic. It feels like long wait and of course as the Christmas rush is now over I have a lot of thinking time.
Im convinced it's Pagets, it does not itch and it is not painful, but looks like it should be! Over a year ago now I went for my usual mammogram check up, I had been worrying about a small painful hard lump in my right armpit right next to the breast. I had a ultra scan which showed nothing, and the lady that scanned it seemed almost cross that I was there as she said to me who found this 'lump' was it you or the breast nurse, when I said I found it she told me crossly that it was part of the muscle wall and did a big sigh! Anyway Im now wondering if it is actually something, it is still there and it is still painful.
I know there is no answer for me at the moment, but by writing this and knowing there are others out there who know and understand what this feels like makes me feel less by myself. My longterm boyfriend is petrified and I feel l cant tell him how I am feeling, not yet any way. And as it is supposed to be a happy time of year and I dont even know yet if I have anything to be bothered about I can't tell my family either. :-(
Julia0 -
ju 18. Sorry you have this worry. Fingers crossed for you its not pagets. Most people it is only diagnosed with a biopsy, it rarely shows up any other way, good luck and let us know how you get on.
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Julia: sorry that you find yourself here and have a wait until you get answers. That is the hard part. We are here to talk to!! When is your next appt? Please keep us posted.
glennie
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Hi Lou23 and Glennie, my next appointment is the 5th January and then it's a referral to the breast clinic which will take a minimum of 2 weeks, I'm hoping I will be seen by at least the end of January. I'm intending on asking for a biopsy, although I'm hoping that will just happen, the last thing we need in these situations is to have a battle with the doctor.
I really appreciate your support, thank you so much. Will hopefully sleep better tonight.
Julia
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Hang it there!! It's hard to wait. Have you had a mammogram or any imaging at all?
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Not yet, I'm still waiting to be referred to the hospital. Still using the fungal cream as told to by the doctor, but it isn't making any difference. I agree, it is the not knowing that is hard.
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Julia,
I'm so sorry you have this to worry about. Is there any way to sneak in to see a dermatologist? That was what I did in order to skip all the waiting. I knew he would do a biopsy if I asked him...and he did. It took over a week for it to come back...by that time I had had the mammogram and had seen the breast specialist. When I got the call that it was positive for Paget's, my breast specialist skipped a guided biopsy and we went straight to surgery.
Best of luck to you....
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Hi, yes that's a possibility having an appointment with a dermatologist. With everything being upside down here in the UK with holidays, services closed or reduced there is not much I can do at the moment. When you are referred to the breast clinic with suspicions it's supposed to be quicker. Unfortunately I don't have any private insurance any more, so it means waiting in the queue.
I do feel more positive today, although Im convinced I have pagets, I'm having an angry spell at the moment,thinking this isn't going to get me attitude! Lol! I have had cancer before, skin cancer, (malignant melanoma), in my twentys. I was far less scared then, not sure why that is.
Thank you for your advice, it's much appreciated. I'm crossing my fingers that I'm wrong and this is just a bad dream!
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The holidays really throw things off. Good advice about sneaking to a dermatologist if you can. Keep using the cream, so that when they ask,, you can say you followed directions and now let's move on!
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Hello, I don't have any news. But I am wondering if my doctor isn't taking things very easy and slowly. I've been diagnosed in dec 9th and haven't done anything yet! My appointment is for next week not for the surgery but to show him the mammo and echo results. Later there will be other appointments to see the anesthesia doctor and make thorax radio. I am worried that these delays could make things worse.
If you don't mind, how much time you had your surgery done after being diagnosed? Who thinks this delay is very long??
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I'm sure it feels very long to you. I was diagnosed on June 27th,, forgot what day I had the biopsy but it was around 10 days earlier,, and I didn't have surgery until Aug 8th. There were several different delays. When you have your appt next week, can you ask about getting a surgery date, so at least you KNOW when it is happening and you can get ready?
I'm sure having the holidays happen slowed things down for you too. Seems to be common with many medical procedures.
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Ilaam, so sorry you have to wait. I was very worried and rushed my surgery two weeks from diagnosis....However; my BS said waiting 3 months would not change my prognosis. Wasn't sure what my prognosis was at that time...but it is not unusual to have some time before treatment... I hope you get answers and treatment soon.
Les
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Thank you glennie19 and lessharp! So it seems usual to wait some time before the surgery.
My next week appointment is for Tuesday.
Today I had a mammography and an ultrasound for both sides and they were clean, I'll show them to the surgeon Tuesday. I can't stop myself from being a little bit happy with the mammo/ultrasound results even though that doesn't mean there is nothing under Paget's but I hope so
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ilaam: that is great that you had clean mammo and ultrasound! It is possible that you only have Paget's, but sometimes DCIS is hard to see,, mine was. We will be with you in spirit for your appointment,,, we call that being in your pocket or in your bag.
glennie
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Hello...first time here...i am 44 yo and suffer from eczema About a few months ago, my right nipple started itching and getting flakey skin around and on the areola. I try not to self diagnose myself, but came across Paget's disease...well the panic is starting. I just had my yearly mammogram on 12/12 and all came back normal. However, I am not sure what next step to take? I have an appt with a dermatologist on this Friday, but I am not sure whether that's the specialist to start with. Or should i see an Oncologist? Any suggestions?? It would be greatly appreciated. Thanks
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Hi, SoccerMom,,, I think the dermatologist is a good place to start. No need to see an oncologist until a diagnosis, if any. It could be eczema. Really the only way to know is a biopsy. Explain your concerns to the derm and see what he/she says. DO NOT PANIC. Stop reading Dr. Google. Derm may want you to try a cream for a couple of weeks and see if improvement. Do try. If no better, then go back. Derm can do a biopsy if it is needed.
We are here for you, so pop on here with questions,, and do come back and let us know about your appt. I keep an eye on this thread so I can answer questions. And you are welcome to private message (PM) me if you want.
glennie
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Thank you Glennie...I really appreciate it. The stress is making my eczema on my hands flare up and this is all driving me nuts. I will keep you posted.
thanks again
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glennie19 thank you very much for your support and for your answers. I really really appreciate that. I read your previous posts and I knew that even with clean MRI there could be DCIS. I think of it as it is better than if there was something suspicious in the mammogram/ultrasound but it is completely essential to be careful. I'll let you know about my appt.
SoccerMom10, as glennie19 mentionned the dermatologist is a good place to start. Mine, to whom I am grateful, prescribed me cortisone creams than performed the biopsy, because my nipple wasn't healed, without asking me any mammography or other tests despite my young age (25) and clean BC history in my family. It is good to see a dermatologist and it is primordial to not ignore things but do not panic. My dermatologist told me it could be many other things. Even if cortisone creams don't treat it, the biopsy is performed to be relieved and to eliminate the rare possibility of Paget's. She told me that a begnin inflammation of the milk ducts could cause the same symptoms. Stop searching on Google too. That's the first thing my Dr told me: "It is full of foolishness". He gave me many information that were the exact opposite of what I read on Google in many serious websites. I wish you the best of luck.
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SoccerMom, you already suffer from eczema. So it is a real possibility. Does your nipple rub against bra? Do you jog/run that could cause irritation? Just tossing a few ideas out there. Remember to breathe. I know it is stressful.
Sending hugs to you and ilaam.
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Thank you ilaam!! I appreciate the support and the advice. I already have cortisone/steroid creams that I use for the eczema on my hands and it has not worked on my breast. I am hopeful it's just plain ol' eczema.
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I don't run/jog but my breast oozes some clear fluid that causes it to stick to my bra/or t-shirt. Going braless is a relief but the itching and soreness and making me crazy
.We'll see what the MDs have to say this Friday.
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Thank you ilaam!! I appreciate the support and the advice. I already have cortisone/steroid creams that I use for the eczema on my hands and it has not worked on my breast. I am hopeful it's just plain ol' eczema.
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