Paget's Disease of the Breast
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Hello, wantmymommy,,,,glad you found us,, sorry you are here.I am guessing that they want the mammo and ultrasound to see if there is anything else showing up in the breast. Then they will have a better idea about doing the biopsy. If nothing shows up, then they can biopsy only the nipple,, if something else shows up, they may want to biopsy that area too. Do it all at once. Paget's is pretty rare, so try not to get too anxious. Easy to say, hard to do. Please keep us posted, and ask any questions that you have.
And yeah, I would say, hubby is probably in denial.
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Just Diagnosed with Pagets
About 3 months ago, I notice a change in my left nipple. It was red and irritated, started to discharge. The discharge would leak into by bra and make the nipple stick to it further irritating it. The breast itself was a little itchy but the nipple never was...just painful. I went to the doctor where they put me on an antibiotic and the symptoms seemed to get better. This happened several times until they decided to do a mammogram. I am 38 so this was my first time having a mammogram. Nothing was found but my doctor still referred me to a specialist because the nipple issues kept returning. Again, nothing was found on the additional mamorgrams and ultrasounds. The specialist did a punch biopsy of the nipple and just heard back today it's Pagets. I am scheduled for an MRI to see if anything additional is present and meeting with a surgeon to see my options. They will likely take the nipple and not sure about the whole breast. I am looking to connect with other women who have gone through this in the past or currently going through. Thanks!
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Hi Melkirk. Welcome to BC.org. We're sorry that you have to be here for this reason, but really glad you've found this wonderful community for great information, personal experiences and support.
We're sure that other members in this thread will soon welcome you with open arms. Until then, you may want to read through the pages of the section Paget's Disease of the Nipple, from our main site, to learn more on symptoms and diagnosis, surgery and additional treatments for this rare form of breast cancer.
Please let us know how MRI goes. We're here for you!
The Mods
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Hi Melkirk,
I just had clear mammo and ultrasound and having biopsy at breast cancer center in Thursday morning. Good luck with MRI. I'll post back after my biopsy.
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Dear Melkirk, Let us know how your MRI goes and wantmymommy let us know about your biopsy. The Mods
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Hi Melkirk: sorry to hear that you have joined our club. I had Paget's, so feel free to ask me any questions that you might have. I chose to have a mastectomy because I didn't want to do rads. After surgery, DCIS was discovered which did not show up on my mammogram, or ultrasound or MRI. Basically your choices are lumpectomy (removal of the nipple and clean margins) with radiation or mastectomy. Radiation is recommended after lumpectomy due to the fact that the majority of patients with Paget's have something underlying in the breast, the way that I had DCIS. Your surgeon will give you all the options.wantmymommy: hoping for a negative biopsy for you.
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no biopsy at this time. Decided watchful waiting until something more definitive shows clinically. I had no symptoms when I was there and she believes probably papilloma but wants to see how it presents. I will call her when symptoms return so she can examine me then and go from there. Whatever it is seems early stages so I'm okay with this plan but will be persistent until I know something for certain.
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Thanks everyone! So glad to know I'm not alone in this. Since Pagets is so rare, I feel a little like an island. So the MRI found two masses they believe are DCIS. Hard to believe they wouldn't show up on the mammogram but it seems to be common with this type. They are also doing genetic testing since I am under 40. I think that will be very interesting and will weigh into my decision of how to proceed. Please share your thoughts about the lumpectomy and radiation as opposed to mastectomy. Not sure what to do0 -
https://community.breastcancer.org/forum/68/topic/790992?page=7#top
melkirk: you are not an island here. Let me extend a bridge from me to you! The link above goes to a thread aboud DCIS by Beesie. It is VERY informative! Lots and lots of information to help you make a decision. One thing that confuses me about your post is that "Two masses that they believe are DCIS". From my limited knowledge, DCIS shows up as microcalcifications,,, not as a mass,, so I'm confused there. Please consider reading that post linked above and ask your doctor and surgeon why they think it is DCIS and not something else. Are the masses in an area where they can do a needle biopsy? Something to think about.
Many things to consider on your surgical option. Are you planning recon or not? Some women do bilateral MX's so that the recon will match better. I knew that I didn't want recon, but since the entire nipple and areola area was going to need to be removed, I felt like my breast would be sliced in half, so I figured just take it all and I could avoid rads that way.
If you choose lumpectomy/radiation, will you be able to drive to the radiation center 5 days a week for 5-6 weeks? (find out how long it will be) For some people, who live far away from a center, that isn't easy.
Do not feel rushed into making a decision. Read up on Pagets and DCIS. There are articles on this site and if you Google, look for legitimate medical articles, like from the New England Journal of Medicine,,, medical sources like that. Get a 2nd opinion if you want.
My surgeon wanted me to do a lumpectomy and rads, and I told him NO way. He tried to talk me into it! I think many males feel like women want to preserve their breasts at all cost (i'm generalizing here, but that's been my experience) Finally after a long phone conversation, he admitted that his wife (also a doctor) would do the same thing I'm doing! And on a side note,,,, he left excess skin for future recon, that I didn't want. We never had a discussion about recon, cuz I knew I didn't want it, and he just assumed that I would have it down the road and left the skin. IF you decide that recon is not for you, be very specific about what you want. If you are thinking about recon, get recommendations for plastic surgeons who do it in your area and make an appt. Find out all your options.
It's information overload time,,, hang in there,, it's rough in the beginning while you figure out what you want to do. I check this thread a lot, so feel free to ask questions,, or PM me if you want.
glennie
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Glennie-lost the link to our discussion group. Would you please send it to me at my email address or pm me here?
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Hi Glennie19, thanks for the link! I will go there next and read up. I may have my terminology mixed up, this is all new to me. I was originally told nothing else was found except the nipple biopsy tested for pagets. They did the MRI and have two areas of concern. I referred to them as masses, but honestly don't know what they are. I think I was a bit in shock with the news and didn't catch it all. They are doing a needle biopsy on each before going further but I remember they mentioned DCIS because they said they were likely cancer but not invasive. Thanks!
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Hi ComeLordJesus, Any update on how you are doing? I was also recently diagnosed with Pagets and will have surgery next week. Wonder how you are doing
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Update for me: The two additional areas that were biopsied came back as negative!
I am scheduled for a lumpectomy next week followed by radiation. From everything I've read, I'd really like to avoid hormone therapy. My BCS even said she doesn't know how beneficial it would be because Pagets is rare. Please, anyone else out there have a lumpectomy of the nipple and areola? 0 -
Melkirk: glad to hear that the other areas were negative!! YAY!! Have you consulted with a medical oncologist about the need or not for hormone therapy? That doctor would give you the best answer on that, I believe. I had a mastectomy, so hopefully someone will chime in if they had a lumpectomy, but as you know, Paget's is pretty rare.0 -
Hi Glennie19, Thanks and I always appreciate your comments! I have not yet met with on oncologist yet...is that weird? Or does that happen after surgery?
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I did not meet with mine until after surgery,, in fact the surgeon said it was not necessary since with Paget's, there are really only 2 surgical options: LX with rads or MX. So it's not weird,, but I'm just throwing it out there in case you want to see one before you do have surgery.0 -
July11,2015 sassy125
Hi i am not sure if i have pagets or not. my both nipples are very itchy and also and around the nipple itches also. also the nipples are boths sticking out more and hurts alot to touch for about aweek. Two weeks ago in both breasts felt like burning sensation like something wanted to come out of the nipples, but nothing came out. I saw a doctor today and she gave me a cream and said if it dont get better in a week to come back. Also at my yearly mammogram the doctor so a 6mm lymph node in my right breast and they want to see if the lymph node grows or not in another mammogram in september. Also last night my left nipple itch more than the right and couldnt go asleep untill 2:30 in the morning. so any simmilarities here
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Sassy 125. I am having inflamed, itchy, sensation in my nipple no discharge, and reddness. I had a punch biopsy done just waiting on my results. Before the biopsy the dermatologist gave me a cream and antibiotics and it didn't work.
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Hi this sassy thank you for replying. I went again to the doctors and she gave me a stronger cream and antbiotics for a boil on my upper stomach and the boil is getting better, but yesterday some clear liquid came out my left breast. Also the nipples hurt less , but still hurts and itching is less but still itchy. Also still inflamed. Since yesterday I am keeping a journal and seeing my doctor on wednesday and I'll give it to him so he Wil now what's happening.
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Ji Melkirk, sorry to hear your diagnosis, I also had pagets diagnosed in my left breast this March. I had a lumpectomy, and had my nipple and areola removed, it ws a neat job and I was very pleased although my breast was slightly smaller I still had a cleavage.Unfortunately they didn't get a clean margin so in the end I had a masectomy. I decided not to have implants so asked my surgeon for the flattest neatest scar he could do. He did blanket stitch and a fish tail and all looks good now. Good luck I hope all goes well for you
Regards Lou.
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Hi Lou23, Sorry to hear about your DX as well. I am eagerly awaiting the path results to see if I have clean margins. I'm so sorry you did not. The central lumpectomy left my breast looking a little square but I still have cleavage so I want to stay positive. Turns out I am also a BRCR1 variant so this could also change how I proceed. BS is giving me the option of BMX with removal of ovaries or Rads. I've heard it's more difficult to do recon after rads because I am not interested in a flap recon.
Sassy125: what did you find out today?
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Hello everyone. I have been having a deep itching feeling in my left nipple along with a burning sensation and some pain. About 1 month ago I had a sore come up on my areola that was just a red sore but it also bleed for a couple of days. The sore stopped bleeding and went down some but it is still there and feels like a little lump. My nipple on this breast also looks darker than the one on my right. I go see a BS on July 28th. I am very nervous and don't know what to make of everything. I am trying not to panic but it's hard.
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Hi grlhappy76 and welcome to Breastcancer.org,
Thankfully you've not be diagnosed yet, so we'd suggest that you post on the Not Diagnosed but Worried forum to reach others who can support you. This thread is for members who have already been diagnosed with Paget's disease.
Thanks for understanding and please keep us posted on what happens at your appointment on the 28th!
--The Mods
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grlhappy76: good luck at your appt! Hang in there. Waiting is hard ! Keep us posted.0 -
My lumpectomy went well and healed much quicker than expected. Unfortunately, I didn't get clean margins and high grade DCIS was also found. I've decided to go ahead with a DMX with tissue expanders next month. Good news is I get to skip Rads and hormone therapy so there is a silver lining. It still amazes me that nothing was found with any screening method.
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Hi Melkirk,,,, sorry that you didn't get clean margins. Booooo on that and the DCIS. It is amazing that nothing was found on screening,,, same with me. When will you have the next surgery?
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Sorry to hear that Melkirk, hope all goes well for you.
Glennie I noticed you have trunk lymphadema, it's suspect that I may also have this now, seems like I am following in your shadow unfortunately, do you think you could message me with any info that may help please.
Regards Lou.
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Sorry to hear that Melkirk, hope all goes well for you.
Glennie I noticed you have trunk lymphadema, it's suspect that I may also have this now, seems like I am following in your shadow unfortunately, do you think you could message me with any info that may help please.
Regards Lou.
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I sent you a PM , Lou.0 -
Hi everyone; I'm new to this, having been diagnosed with Paget's in July. I'd had the typical symptoms for more than a year but nobody put two and two together at the breast clinic. Two mammograms and and u/s showed nothing so I insisted on seeing a skin specialist who did a biopsy then and there. I had an mri last week so will get those results in a couple of days. I've pretty much decided on a mastectomy whatever, as I haven't been impressed by their abilty to detect anything. I live in England so maybe things are different here and I hope you don't mind me gatecrashing your forum!
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