Paget's Disease of the Breast
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I had a patch of reddish skin on my areola, and they did the biopsy at the edge (half on the areola, half on skin). If you are concerned they didn't get the right thing, you can go back for another biopsy. Keep a close eye on it and go right back if it keeps causing you trouble, or there are changes or if it gets worse.
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So glad there is this site. I had the first signs of Paget's 3 years ago. Itchy nipple once after shower and then it turned red. That was about it. . I went to a breast Dr. and had mammogram, ultrasound or sonogram, and a breast MRI. Nothing showed up. She mentioned Paget's but was not too concerned. Her explanation of the biopsy was that they could miss the cancer. So I chose to do nothing. About a year later the nipple inverted. This past year the nipple came out and it looked different. I was referred to a breast surgeon. She heard my history, gave me a breast exam, mentioned Paget's and set me up for removal of nipple. That being done the path report verified Paget and DCIS. The margins were not as clear as she wanted. My choice was a mastectomy or removal of the areola. She felt mastectomy was radical in my case and that the results were the same. So the areola was removed. I had clear margins and did 16 days of radiation with 5 added boosters. I am now on Letrozole(generic for Femara). Just started on Oct. 23. Concerned about side effects ......but keeping a journal. Anyone out there taking Als? I am thinking positive and living life to its fullest.
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Hi, sorry you have been diagnosed but happy you are having treatment.
I had a mastectomy but had no further treatment so sorry I can't help you about side effects but hoping someone on here can.
Regards Lou.
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hi! Sorry for the long read!
I'm in need of some serious support! 2 months ago my son and I got thrush, both treated and completely cleared up but my right nipple just kept getting worse. My doctor prescribed more meds and creams but nothing cleared it up. It became cracked very bad, lots of white thick flakey patches, inverted nipple, yellowish discharge, pain and a heck of alot of blood. I did some research and found paget's. My nipple looks exactly like all the references and the symptoms all fit. My doctor refuses to do anything as I'm only 23, even though they found a tumor in the same breast 2 years ago. My nipple and breast became so bad I went to an ER. They did an US, was told they couldn't discuss the results that I'd have to see a specialist. Well they sent the US results to my doctor who refused to do anything. Her response was "it looked like your milk ducts are changing along with some other tissue, I think it's just mastitis." I had mastitis 8 months ago. And it was nothing like my symptoms now. The doctor decided to cancel my specialist appointment. I'm extremely worried. With her saying the milk ducts are changing(only on the affect side) and my tumor has grown that it really might be paget's.
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Mamax2 - If you haven't done so already I would suggest going to a dermatologist. I had DCIS behind the nipple that was not picked up on a mammogram or ultrasound, only an MRI after getting the pagets diagnosis. It was a dermatologist who did the punch biopsy of the nipple, pagets can only be diagnosed by having that done. Hopefully you can get some answers going that route.
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Hi, sorry to hear you are having these problems, I agree with mamax the only way to diagnose is a punch biopsy.
I hope you can find someone to do this for you.
Good luck and let us know how you get on.
All the best Lou.
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- I’m wondering what all your peeling looked like? I’ve had symptoms for three months- itching, sensitivity to any touch, stabbing pains, and a tiny almost imperceptible amount of peeling. When I go to the docs they say they don’t see any peeling. But occasionally I’ll see tiny little white specks of skin. I have seen it on the good nipple too, but not as much. I can also get the good nipple to have little specks if I scratch it. They are so tiny I have to look pretty close to see them. Is this different from your peeling? Everyone that I’ve had look at it say it’s not Paget’s, but it doesn’t feel right. I also have a dent in that breast that has been there for a long time and lots of lumps. I am 32. Ultrasound and mammogram were negative. Insurance won’t cover an mri and docs won’t do a biopsy. I’m just not sure if this is normal or if it’s the type of peeling that comes with Paget’s. They keep telling me it’s hormones, but why all these feelings in one nipple? Seriously boobs are the worst body part. I feel like They’re a ticking time bomb.
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Hi, mine was a red patch more like a sore and bled occasionally. Quite painful and itchy.
Hope this helps.
Regards Lou.
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Thanks for your response lou23. That’s what it seems most people have. I do not have a patch. It’s just generalized. I hope you had a wonderful holiday!
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Thank you, and you x
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Hi All,
Haven't checked in in awhile. I was diagnosed with Paget's. Mine began with my nipple itching like crazy one night. Then it turned beet red and remained that color for 3 years. The nipple inverted. I had no other itching episodes, no scaling of skin, no drainage from nipple. Just had a weird looking nipple. Then about 2 or 2 and 1/2 years later the nipple came out and it just looked different. No other signs or anything. Saw a breast cancer surgeon who said it looked like Paget's and she would go in and remove the nipple. No biopsy or anything. Just remove it. Could be because signs had been present for 3 years. All mammograms were negative and an ultrasound was negative as was an MRI when done 3 years ago with first signs. Mamax2 I would definitely find someone else to look at it. With Paget's often there is a secondary cancer. With me it was DCIS. Did my radiation and am now on Letrozole. Doing well. Hope this helps. Not all symptoms are the same.
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twolitzjo,
That makes me feel better to see that people that have had it for a long time are ok and that it’s not incurable. It must be a slow growing cancer.
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Ataraneh24 my breast surgeon told me it is a slow growing cancer. At this time I am cancer-free but am taking letrozole, with minimal side effects so far. Feel like I am blessed. Hope all goes well for you.
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- Hello. I have not been diagnosed, but I am a little concerned. I have had breast "problems" since I grew them! :0/. Lumpectomy at 16 (benign), multiple cysts. Never a normal mammogram. They all so abnormalities they call calcifications. Two biopsies or two different areas. One was "inconclusive" and the other benign. Two markers injected...All this on the right breast only. For the last 4 months Ms. Right Breast nipple started itching, and tingling (like a nerve sensation). This happens all day long. Very, very scant drainage (nipple feels sticky, but not enough to say color). Saw a breast surgeon and she said she wasn't worried because no skin lesions. I do feel changes (thickening) to that nipple, but she didn't see any problem. I've had a gazillion mammograms, a few ultrasounds. I asked if I should have an MRI, and she said "nah. I'm not worried". What do you think? Am I paranoid? I am 56 BTW. Positive family hx of Breast CA. Thanks so much for listening. Donna
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Hi Donna,
Have you tried an over the counter anti-fungal yet? I never had any itchiness or lesions, just a subtle change in the thickness of my nipple and sometimes it would be a slightly red. One thing that was very obvious to me was was that it was harder and thicker than the other. Even after my diagnosis everyone that looked at my breast was surprised by how normal it looked.
I did have a mammogram first but after that came back normal my GYN referred me to a Dermatologist after topical creams weren't working. He put me on a steroid cream but that didn't work either. The ONLY way to test for Pagets is by doing a punch biopsy. I had that done through my dermatologist. If you haven't tried an over the counter cream, try that and see if you get any relief. If not try a dermatologist, it could just be eczema. Keep us posted!
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Hi Just a question for those who have been diagnosed with Paget's, have any of you been diagnosed with Osteopetrosis it is the opposite to Osteoporosis.?
I was told I had this about 8 years ago, they said my bones are brittle and prone to breaking easily , quite rare and sometimes called marble bone.
I was also told I was more prone to breast cancer and then a few years later was diagnosed with Paget's.
Just interested to see if any of you have the same problem.
Regards Lou.
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Hello ! New here. I also haven't been diagnosed but I am quite worried about recent changes and symptoms ! I'm currently waiting for an appt with a dermatologist to get looked at.
My changes were quite similar to you mbpombpooch! Although I do or did have some itching. It started when I was a few months pregnant I had a tiny patch of dry skin which cream helped. It wasn't until further along in my pregnancy when I started with the intense itching in both breasts which I thought was just changed due to my pregnancy. Well when my milk started to come in a few days after having my babyboy the intense itching started again. I figured I may have a yeast infection but the itch wouldn't go away. I tried a cream prescribed from my dr and the itching went away but came back when I stopped.
I'm now using regular cream and the itching has completely stopped however I do have a thickened skin on my nipple and areola. And they do both look off to me. But mbpooch I'm wondering if this happened to you also. But when my nipples are not erect they look quite normal. But when the nipples are erect is when the thickening of the skin to my areola are more prominent. You can noticed the changes. Hope this makes sense!
All I can do for now is wait for my dermatologist appt and go from there but just wondering if any similar experiences with the thickened skin as right now that is my only concern as the itching has gone and the patchy dry skin is gone as well with me using regular cream.
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Cdnv123 - Glad to hear you have an appt with a dermatologist. I didn't have any issues with itching at all and all my symptoms were only with the one breast. If you have/had issues with both chances are it's not pagets and something else is going on. I didn't have any thickening of the skin, my biggest issues were redness and that the one nipple nipple was always erect. Keep us posted on your appt!
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Hello. I'm new to this group. I'm english second language person and I live in Canada. I'm very worried that I might have Paget's. When my first baby was born (7 years ago) I had an issues with breastfeeding. My nipples were very sensetive and I couldn't breastfeed well. They were very sore with bleeding. I had to use a nipple shield to breastfeed my son. Antibiotics helped me with sore nipples, but since when I have always had a cracked inverted left nipple. I didn't pay much attention to it at all. Since it was always cracked I saw some white/yellow staff in there. I can remove it with my finger and it will get back again. It always was like that and not getting worse or better. Just recently I read an article about Paget's desease and became anxious. Tomorrow is my first appointment with my family doc. and I will first time bring this problem to doctor's attention. I'm so stupid that I didn't show it to him before. I'm 37. No lumps found in breasts. I'm not eating well and not sleeping well😢The only one "positive" thing comes to my mind that it was always the same condition and shape and was not getting worse. I just feel awful!!!
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Hi there, Hakamada8-
We're sorry you find yourself here with this worry! We know it's hard not to jump to the worst case scenario, but there are many other possibilities that would explain some of the symptoms you've described. Paget's is very rare, and symptoms tend to worsen over time. It definitely sounds like there's something going on, possibly an infection or skin issue of some kind, and it's good you're getting it checked out to be proactive! Please keep us posted on what you learn.
The Mods
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Just want to know what is the average age of individuals in this Topic. How old you were when you got your diagnosis of Paget.
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I think the average age for Paget's is 50s, but I had symptoms as early as 36, possibly earlier. I got diagnosed at 42. Mine got progressively worse in the last year until it became very obvious what it was.
My advice would be to try to stay as calm as you can. You will get through this. You will have help.
Just know that the best way to diagnose Paget's is by a biopsy (where they take cells and look at them), which can be done by a dermatologist (skin punch biopsy) or a breast clinic surgeon. A mammogram is not a good diagnostic tool for Paget's (although it provides good supplemental information in addition to the biopsy). You may have to sign a consent form, and it seems scary, but it's not. They put in some numbing medication, take a small bit of skin, put in one stitch and you're done. A week later or so later, the skin is healed back up and you're good. If you want to be sure, and not rely on a "guess" by the doctor, a biopsy will help with the diagnosis.
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I was diagnosed with Paget's at age 74. I had symptoms 3 years ago and I had it checked out and felt fine with my decision to not do a biopsy. I wish my oncologist had said "you really need a biopsy" but she didn't. And so it went. I have no regrets because with Paget's there is a strong possibility of a secondary cancer which for me was DCIS. Maybe 3 years ago that would not have shown up yet. Who knows. My lumpectomy went well and I am now on Letrozole for the next 5 years. Am feeling good and being positive. My breast surgeon did tell me that Paget's is a slow growing cancer......and she did not feel the 3 years was a big deal. Of course she could have been saying that to make me feel better. If creams don't help I would do the biopsy.
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Anyone else waiting for diagnosis find themselves spontaneously whipping out their breast to check for nipple change throughout the day? haha just trying to find some humor in all of this. More people have seen my breast in the last 4 weeks than probably my whole life lol.
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Yes, me. I constantly (every hour) checking my nipple and I think It's changing😢 I'm paranoid. I have done mammogramm and nipple ultrasound - all came back clear. Nothing found. I'm still waiting my appointment with breast surgeon and don't know how long it will take😨
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Yes! I remember that well. Take good care! xo Danielle
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Hi - new to this site. Had a single mastectomy in Sept. 2018 for mucinous cancer. Had lift/reduction on 'good' side, with subsequent mammos good. Recovery uneventful. Now, for the past 5 weeks or so have had off and on (mostly on!) intense crazy itching directly on the nipple of my 'good' side. No rash, no redness, no thickening, no discharge - just the itching. I have a routine onc appointment in 10 days. Wondering if anyone has had that intense itchiness. Thanks!
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Glad you're getting it checked out! I didn't have any itching really. It was more that my nipple stayed erect and was always more red than the other. It hurt more than it itched. Keep us posted on what you hear!
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Hi All,
New here, just diagnosed with Pagets, DCIS last week. I'm 31, had some bloody discharge for 1 week in February 2020. That cleared and a slight redness for 2 more months. All invasive testings, mammogram, guided ultrasound and biopsy on a mass they found were benign. I knew something wasn't right, so I pushed for the nipple biopsy, even though my doctor said, most likely not Pagets. Please advocate for yourself. Doctors are wonderful and do their best, but in the end they are human. They are sending me for genetic testing as I'm shaping up to be candidate for BRCA genes. At this point lumpectomy or matescomy are my options. Does anyone have any advice or which way to go? They laid out the information in terms of local recurrence or overall survival. Im leaning towards the lumpectomy, but scared to make the wrong decision. Any advice is helpful!
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