Paget's Disease of the Breast
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Hill: I hope you can get a biopsy done. I am proof that mammogram, MRI and ultrasound showed NOTHING. Only the biopsy did. They just do not understand Paget's. I've been on this board for over 4 years now, and most of us Paget's patients had negative imaging,,, only the biopsy showed the truth. Do keep us posted.
And what Lou said!!
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Glennie - Glad your surgery went great and you're feeling good! I did end up getting direct silicone implants with only 2 drains (one on each side) and while I'm sore and exhausted I thought I'd be feeling much worse. Spent one night in the hospital, glad I did. Getting up to go to the bathroom for the first time was quite the affair! Dizzy, nervous and took me about 20 min from start to finish with my puke bucket. Thankfully I didn't get sick, I can't imagine what that would feel like after surgery. Yesterday was my first day home and I overdid it in the early afternoon and spent the rest of the day in bed. I am still on Norco although trying to space it out with Motrin in between. It's amazing what our bodies and go through, they are so resilient. 50's in Chicago this weekend so may attempt a walk down to the corner to get some fresh air. Nodes were clear so just waiting on Pathology. Surgeon hopes to have that by Mon or Tues. Follow up appts on Friday of next week. Happy to be on the other side of the diagnosis!
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This is perhaps the shortest actual "cancer" journey ever. My wife isnt really a "forum" type person, but I personally have found not only hope, but also knowledge in all of your amazing stories thru this wonderful network of forums.
My beautiful 50yo wife was Diagnosed 2 weeks ago with Paget's Disease of the nipple (positive HER-2, GATA-3, CK7....negative ER, s100). Her nipple has been "odd" for over 6 months (perhaps 9 or 10), and finally listened to me and talked to our GP about it. For all of this time, she tried creams, and potions for Eczema and skin conditions. Our GP said "we need to get that checked". Initial Mammogram, including a biopsy of an odd Cyst near her nipple all came back as inconclusive (she has lumpy breasts), with further inspection needed.
So we (she) were referred to a Breast Surgeon who Biopsied the Nipple and said it didn't look like Paget's. Biopsy came back as positive to his surprise. At minimum she needed to have her Nipple removed. Next she went and had extensive MRIs that also reported uncertainty whether lesions' found were DCIS or invasive Carcinoma. Targeted Ultra Sound that showed 3 or more lessions that were still inconclusive in nature. From 3 oclock to 5 Oclock on her left Breast was showing focal lessions, abnormal vascularity and evidence of abnormal ductal disease.
He said we (she) had little choice than to have a Mastectomy, as essentially the nipple had to go anyway. She also had sentinel node Biopsy. After learning about false negatives overnight, I need to also get my head around that, and ask the Dr how many he took etc. There are just so many components to this, and hard to get all the correct and important information in one hit.
That all occurred Wednesday, and today we got the results back that the Biopsy was negative. So now hopefully its onto recovery from the Mastectomy and reconstruction plus drugs. "Gratitude"!
I wish you all the best with your journeys, and pray that they are positive and as short as possible.
Paul.
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Glennie, MBPooch - surgery twins - I'm SO happy that both of your surgeries went off without a hitch. Wishing you both a speedy, uneventful recovery. MBPooch, despite how good you feel, do take it easy. A walk on a nice day sounds perfect (it's chilly here in Boston)! Let us know how the results and follow ups go.
Paul, thanks for sharing your wife's story. Glad that she is on the mend and wish her, too, a speedy recovery. We are here for you/her should you have any questions. I'm not familiar with false negatives on node biopsies so I can't provide any guidance there. Don't be afraid to ask lots of questions - her doctors are there to support you. Keep in touch!
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hello
I am a student and i am doing case presentation on Pagets Disease, and came across this page.Looking for information on the following:
What were sign and symptoms?
Describe the pain if there were any?
Did the pain or symptoms interfere with activities of daily living?
What made symtpoms better? Worse?
Were there any other associated symtpoms? (Nausea, vomiting, fever, fatigue, pain in different areas
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My symptoms were,
Extremely itchy, tender to touch at first but eventually extremely painful, bleeding slightly then crust over seemed to be getting better then all start over again, thickerning of the skin in part of the nipple that was affected.discharge that was creamy.
Regards Lou.
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Glennie and Lou, thanks for the responses a few days ago. I've been trying not to think too much about my mammogram and ultrasound tomorrow. I know I'm not "diagnosed", but I appreciate the feedback I've gotten here. Thank you. I'm paranoid that tomorrow they will tell me no biopsy is necessary and send me on my way. I'm just frustrated as to the cause of the low grade burning/itching in my breast and nipple peeling going on. If they don't biopsy, I will make plans with a dermatologist. Maybe they can at least figure out if there is something dermatological going on if nothing else.
Glennie, I hope you're still recovering well and healing up quickly. Lou, I thought about printing out some info, and I just might. Maybe that will help.
Thanks again for being supportive!
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Hill, it is entirely possible that it is something dermatological. there have been others here, certain that their symptoms were Paget's and the biopsy showed it wasn't. That could be you! We hope so! A biopsy will put the matter to rest and give you peace of mind, knowing what the problem is. If they will not biopsy, then definitely make a plan with a dermatologist! Do keep us posted.
I am doing ok! Still draining a lot,, such fun! But otherwise, I am doing OK. Just sore and uncomfortable, but not really any pain.
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So today I went for my mammogram and ultrasound. Nothing was seen on the mammogram other than some new cysts, which were nothing of concern on the follow up ultrasound. The right nipple is where I'm concerned about. The sonographer took multiple (23) pics of the area around my nipple...kept measuring and clicking. The radiologist then came in and also did a lot of measuring and clicking. My breast symptoms (recent itching, burning, peeling skin, eroded healing sore, etc) were discussed in detail. He told me that the cysts were fine, and the mammogram was "clear", but he said there was "something" (that's what he called it) just under my right nipple. He said "I'm sorry, I just don't know what it is. I would recommend you go to a breast surgeon and have them biopsy it". He spent about 10 full minutes trying to get a better picture of it on the ultrasound. He said, "I can't say it's cancer, but I can't say it's NOT cancer". UGH. So..I'm frustrated at this being inconclusive. I mentioned possibility of Pagets to the radiologist, who seemed to know what that was, but he said that Pagets wouldn't "come and go", as my symptoms have. He said they would just get worse and worse. My research shows that people have reported that the symptoms DO come and go. I'm not sure how much he knows about Pagets. Anyway, I AM happy that they are recommending the biopsy though, so the breast surgeon will do it now. I will get my referral tomorrow and hopefully be able to make the appointment on Friday for sometime next week.
Glennie, I'm glad you're not hurting too badly! That's good at least...
Thanks again for reading.
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Hi, that's good news that you are getting your biopsy, and yes your right about it coming and going, I was just about to make a doctor's appointment and it would improve and then start all over again. Hope they see you soon for peace of mind.
Take care Glennie,
Xx
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OH, I am SO glad they are recommending the biopsy. And YES, symptoms come and go. Obviously, they have never talked to a Paget's patient!
Best of luck, Hill,, and keep us posted.
A little sore today, but I probably did too much. Had two app'ts and drove myself. Silly me,,,, off to rest,,,,
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Well, thanks Glennie and Lou, for your comments. I'm feeling a bit nutty now. I went back to the imaging center and picked up my CD with images and the "final report", (which basically said "BI-RADS category 4, suspicious finding. Biopsy should be considered"), and drove it to my OBGYN's office, who then gave me a handwritten order for a "surgical consult/breast biopsy with post procedure mammogram" at a different imaging center than I got the mammo/ultrasound yesterday. I then drove across the parking lot to this other imaging center, who does biopsies. (The place I got mammo yesterday does not do biopsies). Long story short, they got me in today with their radiologist who gave me another ultrasound. This radiologist said "this does not look like Pagets. Pagets just keeps getting worse. It never gets better." (just like the radiologist from yesterday). He said "this is a fibroadenoma". I asked if fibroadenomas could cause the burning/itching/peeling, and he said yes. He said it's a "nipple adenoma". So when I look this up, I do see that these are similar symptoms to Pagets, although I don't know if nipple adenomas "come and go", like my symptoms have done. I don't know what to think. I guess ultimately it doesn't matter. Biopsy required regardless. I just want to know already so I can quit thinking about this!
Thanks again for letting me vent here!
Glennie-take it easy!
I know it's hard to not do too much when you feel like you're up to it. It catches up with you quick! I would be guilty of the same thing, I'm sure! I can't sit still 0 -
As long as you are getting the biopsy!! It would be great if it was a fibroadenoma!!
and yes,, in the long run,, Paget's will get worse,, my symptoms got a little worse, each time it came back. But it did come and go.
Trying to take it easy,,,,
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Hi ladies,
I got my punch biopsy on Wednesday when I was at my appt with a bs. I've already been diagnosed with DCIS and IDC right behind my R nipple...and that's the one that has been having the Pagets symptoms for the past 2.5 years. I have a second opinion with a different bs on Tuesday, and am hoping to have my results by then. I'm trying to get a better understanding of treatment options with, versus without, Pagets. Did any of you wind up needing additional testing like MRIs or PET scans before your surgeries? Did anyone get a recommendation of chemo because of your Pagets (rather than an underlying bc)?
Thanks for your advice.
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Hi Dagny, I had a MRI before surgery, and I think most of us on here did not have chemotherapy, the option usually is lumpectomy followed by radiotherapy, or a mastectomy, I had lumpectomy first but they couldn't get a clear margin so then I had a mastectomy I had no reconstruction and no treatment to follow. I wish you luck with your results.
Regards Lou.
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Hi, Dagny,,, Paget's doesn't require chemo. As Lou said, the options are lumpectomy with rads, or mastectomy. If you also have IDC, I don't know the treatment plan for that, and if it requires chemo or not.
I also had an MRI, but it didn't show anything,, and I had underlying DCIS.
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I got my appointment for biopsy this coming Wednesday. I'm just not sure what type of biopsy they will do, and from what I understand, the breast surgeon will not decide until she meets with me. I have the weird peelingi sore/lesion on the left side of my nipple that has been resolving over the last week, but the ultrasound showed a "8 mm hypoechoic lesion" just under the nipple. I'm wondering if they will biopsy both of those things? Or just the "lesion" under the nipple? I was thinking it would be a punch biopsy of the external sore, but maybe it will be both.. Can anyone here comment as to what type of biopsy they had?
Thanks if this is repeat information.
Glennie, I hope each day you are getting more back to your normal
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Seems like they should biopsy both. I had a "punch" biopsy. If they are not going to biopsy both, I would ask them why???
Thanks Hill,, I don't feel too bad, but looking forward to getting the drain out.
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HillD11 I would definitely want a biopsy of both. I had a punch biopsy of the external sore first which is how I got my Pagets diagnosis. Had an MRI after which showed the mass under the pagets so had a core biopsy of that area which was the DCIS diagnosis. I felt better knowing exactly what was going on. My MRI also picked up two other masses, one in each breast. Had those biopsied as well and they were thankfully both benign.
glennie19 I still have one drain in too…uggghhhhh! Think I'm also developing a seroma where they did the lymph node dissection on the other side. Have an appt on Friday to reassess. Other than that my recovery has been pretty great. Pathology was clean and no other treatment needed, phew! Feel fortunate and thankful, those were some dark months when you're dealing with the unknown. Hope you're feeling good!
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MBPooch and Glennie-I hope you both get your drains out soon! Sounds like no fun. Also, MB, glad your pathology report was good news!
Also wanted to say thanks for the input. I will ask them about biopsy-ing both. There's definitely something under the nipple. My nipple has started peeling again, which it wasn't doing the day I went in.
Wanted to ask either of you (and sorry if this has been posted somewhere else on this board) but did both you have "clean"/negative mammograms and ultrasounds before your biopsy? My radiologist said an MRI would not be helpful in diagnosis, but clearly it was for you MB. Am I correct that DCIS usually does not show up on Mammogram or ultrasound?
Trying not to obsess too much before Wednesday, but I just had those few more questions.
Thanks..
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MB, Glennie - I hear you on the drains! That's probably the worst of the recovery in my opinion.
I realized that 1 year ago today, I was 2 days into my reconstruction recovery. Wow, time flies! Wishing you both continued good vibes in your recovery.HillD - I had a clear mammogram and ultrasound before I had my biopsy (where I tested positive for Paget's). I did an MRI prior to my mastectomy and that also showed clear. However following my mastectomy, my pathology came back positive for DCIS. I would recommend you ask them to biopsy both since they will already be in there. Wednesday will be here before you know it. Good luck! We're here for you!
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Kmrbailey-Thank you! I will ask for both to be biopsied.
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HillD11 - Yes, my mammogram was negative and when I had the ultrasound for the guided core biopsies the techs told me that without the MRI they would have not seen the DCIS or the other 2 masses. It's crazy to think the DCIS was only evident on the MRI with verification from the ultrasound guided biopsy. It took 3 tries for biopsy as they were having a hard time seeing it on ultrasound. You're doing all the right things!
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Wow..I can't believe we have to advocate so hard for ourselves with this stuff! MBpooch, that's just crazy. So glad they found it! It surprises me that MRIs aren't more of a standard with any suspicion of Pagets.
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My mammogram, ultrasound and MRI were all negative. The radiologist and breast surgeon were "sure" I didn't have Pagets',, and then I had underlying DCIS too,which was not found until the mastectomy.
My understanding is that DCIS doesn't really show up on MRI, but it is better seen on mammograms,,, as "Calcium deposits" that are in a straight line,, cuz they are along the duct, thus they are in a line. Random calcium deposits are not important,, but if they are in a line,, that apparently is a sign of possible DCIS. Don't quote me on this,, but that's what I remember hearing.
HillD: I would definitely get both biopsied, and get whatever imaging you can,,, cuz it doesn't hurt. If your insurance will pay for all 3, like I had, go for it.
We really do have to advocate for ourselves. My doctors were sure I didn't have anything. the problem is Paget's can look so benign, like a rash,,, until it gets really bad. If you google pics, (I dont recommend it) they are terrible open wounds. That's what they think of with Paget's , as opposed to early disease. By the time your wound looks like textbooks pics,, well,,, the possibility of spread is much greater.
Not trying to scare you! I just want you to be firm and insistent on getting all tests you need, and don't let them talk you out of it.
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https://community.breastcancer.org/forum/68/topics...
Hill: if you want to know more about DCIS,, Beesie is the guru here. I put a link to her thread on DCIS. It is VERY informative!!
all the best,,, do keep us posted.
glennie
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I agree with everything Glennie said! Definitely try to get all 3 types of imaging, my insurance paid for all 3 as well. My DCIS was slightly bigger than anticipated 1.7cm after surgery but they cross referenced my MRI with my mammogram and the only indicator was on the MRI. Without the positive skin biopsy of the area, Pagets would have never been diagnosed. I also agree with what Doctors think are "typical" Paget symptoms. My Pagets looked nothing like textbook photos. Never cracked, bled or oozed. I saw both my Derm and Oncologist 1 day after diagnosis and both said they couldn't even see it. I had gotten a steroid shot at the time of biopsy and the Pagets one week later had completely disappeared. SCARY stuff, continue to be diligent and keep us posted!
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Wow, thanks you guys, for all the information. I am frustrated that no one sees anything. I have what looks like another nipple growing off the side of my actual nipple, and it has roughened skin. There is also peeling every morning when I wake up, but then it goes away. Honestly, unless someone looks at my breast first thing in the morning, it doesn't look THAT bad. The "second" nipple has gotten a lot smaller than it was a few weeks ago, but still there. I can tell though, that both radiologists and the mammo tech and sono tech thought it wasn't much to look at. But when it's YOUR boob, you know that it doesn't look right! Especially the peeling thing..Plus my whole breast just burns intermittently throughout the day, up into my armpit. Anyway, thanks again. I'll know a little more Wednesday I guess. Whatever this is, I'm ready for it to be gone. Got a notice today saying I'm having a needle biopsy/FNA (the mass is right behind my nipple-ouch). I hope this gives me some answers! Being able to vent here and get feedback has been invaluable. Thanks again..Will take all your words of advice with me on Wednesday!
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Can you take a photo first thing in the AM when it is at its worst? Just a thought.
Best of luck tomorrow!!
glennie
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Glennie, good idea, I should've thought of that! lol
Thanks for the luck...
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