Paget's Disease of the Breast
Comments
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I opted for a mastectomy partly to avoid the radiation and partly because the MRI found some DCIS (Mammo and Ultrasound were clear) and I felt it was just the safer way to go (plus less chance of having to have more surgery done in case it wasn't all removed in the first try). I ended up having to do chemo & herceptin though because the post surgery pathology report found some IDC.
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For me, radiation could begin after the semester ends and continue into the summer when I'm not taking classes anyway. We'd planned to relocate, which involves selling my house and buying another, to be closer to school, but it sounds like even that might be doable also. I've lightened my course load for this semester, and next year is pretty light, so that gives me a year and a half before I start the graduate work :fingerscrossed:
In looking through the diagnosis stuff, I'm curious - is it appropriate to ask about grade and stage with Paget's? Is this something they may know prior to surgery?
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From what I've read, Paget's itself is considered a stage 0 cancer but if there is any other cancer associated with it, the staging is based on that other type instead.
Since mine turned out to involve some IDC (discovered in post-surgery pathology), my stage is supposedly a 3 because it's IDC with skin involvment even though my nodes were clear and the IDC was very small. I just don't feel like I have much in common with the other stage 3 ladies on the forums though.
I never thought to ask about the grade (or staging really) before the surgery but I would think it would be fine to ask. It's just that anything they tell you before the surgery could change once they have been able to fully examine the portions they have removed.
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So much for no masses. I just got the MRI results and there is a suspicious mass behind the Paget's and another mass. Right has a mass thought to be benign, so that's scheduled for a 6mo f/u. Scheduled a core biopsy on the left.
I know it is far more common to have a mass than not, but I still feel awfully let down since the mammo and ultrasound were pronounced clear.0 -
Yes, it is disappointing, but then again, if you didn't have the MRI and they didn't find the extra stuff until after the lumpectomy, you'd probably have to return for more surgery so they can make sure the margins are good. It's good to know as much as possible before the surgery.
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Dang it! They said the biopsy results would be back Friday or Monday. I was so hoping for yesterday.
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Hi Everyone,
I'm new here and I'm so glad that I've found this forum. I've been searching for information about Paget's disease via internet but I'm thankful to know people who share their experiences about the disease.
I'm really worried about my daughter coz she has these kind of symptoms. It started early April this year. Her aerola became dry, scaly and a bit darker than the other, yellowish fluid was also present. Our doctor prescribed creams and antibiotics. She has told us that it might have something to do with puberty. It got better but the yellow fluid comes and goes. I apply QV cream so it's not dry or scaling anymore but I'm still concerned about why it has yellowish fluid? It's not a lot since she had the antibiotic and creams but it still has a small amount present.
I'm so scared because she's just turning 12 yrs old this year. We have an appointment with a specialist but I really don't know what to expect. She's so young, and I've read that someone was diagnosed as early as 14 yrs old. They did not give any information what happened to the girl, so I am really worried what's going to happen?
I know, this is a different situation but just in case the test would turn positive, I really need advice to help her deal with this. I would appreciate any information you guys can share.
Thanks! I'll keep in touch.
All the best,
Happy Daisy
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Happy Daisy- You are doing the right thing to consult the docs for your daughter. Believe it or not, some of the best docs to see for dx'ing pagets are the skin docs. It IS highly unlikely, at your daughter's age that it is pagets but it definitely is a condition that warrants further inspection to prevent anything. "oozing" is a symptom that comes with many things and should be followed up on to treat. The docs are being prudent when they avoid a punch biopsy for your dd because of her young age and the pain and scarring that would occur. Again, she has statistics on her side suggesting no pagets but she should be getting treated for whatever is causing the last remaining symptom. Remember, pagets is rare, BC is usually found at a much greater age and even if it was pagets, it's easily treated in the early stages.
Good luck
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I'm now *almost* happy about the Paget's.
Surgery revealed DCIS and a 3mm instance of IDC, along with the Paget's. The underlying DCIS was not detected by mammo, ultrasound, or various checks by surgeons. It was seen with MRI. The IDC wasn't even seen with the MRI. So, the silver lining of the Paget's is that it got the IDC found much tinier and much earlier than would've otherwise been the case.0 -
Hi, I am curious if anyone here diagnosed with Pagets had suffered repeated sunburn on chest/nipple from either tanning topless, tanning in tanning salon throughout their lives before developing Pagets.
A few of docs I have been to believe that this is possible to get that way. Although I have not been diagnosed with Pagets yet, my biopsy came back rare atypical and I will be gettin another biopsy soon to compare the two although no Pagets yet but some mild symptoms.
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Haven - that would be a definite 'no' in my case. I've had badly sunburned back and shoulders in the past but not on my breasts. I was never into tanning.
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Same here. I burn easily and so have always been careful about sun exposure.
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Hello Dear,
There is no need to worry. You mean you already done Mastectomy. May I know which one (Left side or Right side)..? Are you feeling yourself any complications..? If not it's ok. Just lead your normal life. You disscused about radiation therapy. How many radiations you took..?
Regards and Thanks,
Dr. Arun Kumar Jha
Medical Oncology (Tata Memorial Hospital, Mumbai, India)
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Um, yes, I sunbathed in the nude aged 18 and in my early 40's did the tanning bed and tanning booth. Sigh.
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I am also a Paget's Disease survivor, I have written a blog if you are interested, please read.
http://pagets.blogspot.com.au/2013/09/diagnosis.html?showComment=1379944483323#c1207056687983653577
Good luck with your journey
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I also have Paget's. I decided to have a mastectomy so that I could avoid radiation. I'm glad I did cuz the biopsy found DCIS which was not seen on mammogram, MRI or ultrasound. I'm glad to have found this post and find some others who have Paget's also. I had a sore on my nipple that came and went and a small amount of discharge one time. Those were my only symptoms.0 -
I'm 29 years old with a family history of breast cancer and dr is having me checked out to see if i have pagets , I'm so confused about everything... my nipple on the left side inverted and it was sudden 2 years ago w/ discharge. had a mammo and showed nothing So saw surgeon today So he said he does not want to do a biopsy he thinks its nothing because he didn't feel a lump and because i don't have changes in my skin he thinks its nothing... which i find that unsettling because when he pushed on my breast it was pain full n he thinks its fine so he is just going too so a ultrasound and refer me to a plastic surgeon ... Idk I'm confused0 -
You couldn't feel a lump on mine either. And mammogram/MRI/ultrasound all showed nothing. I just had an intermittent rash and some discharge once. None of my symptoms were present when I saw the doctor. The surgeon and the radiologist (who did the mammo and US) both told me: "I really doubt this is Paget's" Well, surprise on both of them. Only the biopsy showed that it was. I can understand why you are confused, but if you want a biopsy, insist on it. Tell MD better safe than sorry.0 -
I too was diagnosed only with a skin punch biopsy. I had some dry itchy skin around the areola. My mammo, ultrasound, and a biopsy of a mass on MRI were all negative. I couldn't feel anything. My surgeon couldn't feel anything. If it weren't for the Paget's, both my IDC and DCIS would have been undetected. They were found only in the path exams of the tissue resected to remove the Paget's.0 -
Same with me. My DCIS was found during the pathology after my mastectomy.0 -
Hello Paget's People
Glad to have found this site. I had very minor left nipple irritation, nothing gross, just flakes, no oozing. I swim alot, so let it go, but I am supposed to travel this winter so thought I'd better just get it looked at. I knew there was a rare cancer that presents as a skin disorder. I had a skin biopsy done on Friday Sept.27 (needed one stitch), was called by the Dermotologist a week later on Oct. 4th, to tell me I tested positive for Pagetoid Cells. My family doctor then sent an urgent consult to the local Women's Breast Health Centre. I will see the doctor on October 21st. In the meantime, my case fell through the cracks, because all I'd be showing up with at the appt on the 21st was a year old healthy mammogram. I then got to making phone calls and asking questions till I was finally told to have a mammogram on both breasts and an ultrasound on the affected left breast. I was told this on Friday October 11 ...on a long holiday weekend. This gave me 4 business days to try to book a mammo and an u/s and get results to the doctor for the appt on the 21st. Well, I grabbed the bull by the horns, and called just about every clinic in Ottawa and the area-NONE could book me sooner than the 23rd-too late. So once again, I paid to fly an hour to Toronto get an appt on October 16th, and my family doctor got the results the next day. (Had to fly to Toronto to see the dermotologist as well-otherwise, I'd still be waiting till Nov 19 to see a dermo in Ottawa!!!)
So at this point, I have a skin biopsy indicating Paget's, and a clear mammogram, and a clear ultrasound which indicates that the cells have not travelled inductile. I guess that's the best news I can get to this point. I assume on Monday, I'll be sent for a MRI. My history-54years old, healthy but adopted, so no history. I did have a child (my first and only) at age 41, so I guess that's my risk factor.
I look forward to sharing my experience and looking to everyone for advice. Hang in their ladies!0 -
Wow, smiles,,,, how crazy that you had to fly for your appt's!! Please keep us posted.0 -
Hi all, I am reading the latest posts and it seems like you are all xperiencing what I did. Paget's disease is not very well known even by knowledgeable medical professionals. The doctor who read my final mammogram said it was not Paget's on my nipple. I raised my shirt to show him as we were sitting in the area in which he evaluates mammograms, and he said it's not Paget's ....this was before I went to my wonderful breast surgeon and thanks to her I had the nipple biopsy and bilateral MRI with contrast that showed Paget's disease in the nipple and DCIS in the left (a recurrence in the left) and DCIS in the right breast (the DCIS in the right did not show up on a post MRI ultrasound). I don't know why there is confusion about Pagets because it is not rare anymore, from what I'm reading.0 -
I guess it is rare enough that many doctors haven't seen it.0 -
Hi ladies. In my case, the doctors did not think that I had Paget's, but something in my gut just told me that there was more going on. So when I had a lumpectomy/SNB for DCIS, I begged for the punch biopsy. The good news, thankfully they only found DCIS--bad news, they found Paget's too. I had a mastectomy with immediate reconstruction. My general surgeon said that he has only seen it once, the breast health nurses only 3 other times, and the plastic surgeon had only seen it once too. Thankfully mine was caught early and just did not present itself the way they had seen it in the past. Just lots of itching, slightly cracked nipple, slightly flattened, burning a bit, pin pricks of discharge. It seemed to get better with cortisone cream as my ob/gyn recommended. So I was hopeful, but just "knew". It is so important to listen to our bodies, our minds, and our hearts!!!! Take care and deep breaths!!!
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hoping, you had a prophylactic mastectomy due to the DCIS?0 -
Hi there.
Glennie, I had the bmx due to the pagets. I was glad I took this route as there were LOTS of changes going in the other breast including focal microcalcifications-all found to be benign changes, but lots going on nonetheless. I am also 43 years old, 42 at the time of all this. A bmx was just the best decision for me. I am followed closely. Every 6 months by my general surgeon and oncologist, but did not have to do more. The markers I had were er/pr- and Her2+ which scares me, but it was explained that since all was insitu it really doesn't change treatment. The belief is that my pagets was, in fact, related to the dcis. So even though I had pagets my report remained TisN0M0. The attempt was lumpectomy followed by rads and then the pagets was found. (SO GRATEFUL I begged for the punch biopsy when under for the lumpectomy) I went in two weeks after the lumpectomy/SNB and had the bmx with another node removed because it was found to be swollen, but the thought was due to the first surgery. VERY thankful that was the case. No malignancy found.
Edited only to add that I needed the pbmx because I wasn't a good candidate for a umx and to be quite honest, I was one that just couldn't handle the anxiety with just one removed. Individual differences for sure. Each has to do what is right for them! I guess that is why there are so many different paths from the same road even in the very early stages of this monster.
Take good care!!!!!!!!0 -
I have to admit that I worry about the one I have left. I have VERY dense breasts so it is difficult to see anything on mammography and even the MRI didn't show either the DCIS or the Paget's. I have a follow-up MRI in March (6 month follow-up) and the oncologist apt, so I'll see then. My onc didn't see the need for any further treatment now that I had the mastectomy. I have just read about a lot of women having prop bmx with DCIS so that's why I asked. Cuz I keep wondering if I should do that. I'll be 55 in Jan and I still haven't reached menopause yet.0 -
Hi Cass,
Was the dry itchy skin on the areola all you had? This is what I am experiencing too, not on the nipple. I have a doctors appointment today. I also found a spot that looks like a cluster of blackheads, when pushed in I can feel a very small lump, this is not near my areola though. I went for a Mammogram last Thursday and still have not gotten the results back, but reading many posts along with yours, I am worried as a mammogram can not pick up paget's. I am going to insist on a biopsy today - he better listen! A question, did your symptom disappear only to come back? This is what happened to me. *Mental note to self - Stay Positive!*
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Danielle, my rash was on the areola too. And it would disappear and come back. I hope you got the biopsy. Keep us posted.0
