Paget's Disease of the Breast
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please see the thread I just started and tell me if the picture I posted looks similar. I just noticed it in the past hr in flipping out with anxiety thank you in advance and good luck with your treatment and journey
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ilaam, That all sounds like good news. I hope you are indeed the 3% with no underlying cancer/DCIS. I have to say, I'm questioning the doctor that is treating you. I hate to say that....but him saying it isn't dangerous or no big deal, etc. I'm not saying Paget's is a death sentence..it is very treatable provided caught early/noninvasive component...but I would sure be getting a second opinion.... he seems a bit dismissive. Praying for you to have good results!
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GRENYEDREDBONE8699, Photos cannot diagnose Paget's. Best course of action is Dermatologist to biopsy it. That is the only way to determine if it is Paget's. There are lots of skin conditions that can cause flaking and itching. Best of luck to you!
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Thank you lessharp, I don't think I have enough time to see a second opinion before the surgery. Maybe I should do it later. Can you plz explain what do you mean with invasive component? You mean invasive underlying cancer or paget cells themselves? To the best of my understanding from google/forums/Dr, the severity of Pagets comes from the cancer it hides (dcis/idc).
And what could another doctor tell me or which extra exams could he prescribe to me? I am in France now in the most known institute here and my surgeon have a very long experience and is very known as well, I was somehow privileged to be followed by him.
Let me know plz what else could be done for now so I can judge and maybe ask my dr. I asked if any lumph nodes will be biopsied and he said there's no need for that before the post surgical results.
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oh, no no no,,, they need to do a sentinel node biopsy before they remove your nipple. The dye is injected into your nipple area and then flows down to the first (sentinel) node and that node should be removed for analysis.
Yes, he can and will get a clean margin with removing the nipple/areola area, but unfortunately there could still be DCIS or IDC in the rest of your breast. It is not easy to see DCIS before surgery,,, mine was missed until they did the pathology with my mastectomy.
lessharp is right,,, Paget's is very curable,, but there could still be an underlying component,,, and I think that you should have a sentinel node biopsy to be safe. Many doctors are dismissive about Paget's cuz Paget's itself is VERY local,, so they think,,, not a big deal,,, but it is what COULD be underneath that is the worry.
Even my surgeon,, who was very surprised at the DCIS,,and a very dismissive surgeon,,,, did a sentinel node biopsy. He took 6, "just to be safe".
I too hope that you are among the 3% who have nothing underneath. (((hugs)))
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Oh my God I'm freaking out! I have no more time to see him before the surgery (Monday 8am). Is it a simple procedure? Could it make it if I tell right before the surgery?
And by the way, have you any idea if I can go back to work three days after the surgery? (I'm having total anesthesia)
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What kind of work do you do? Is it a desk job? Can you not take more time off and rest and heal up first? Honestly, I would suggest taking longer,, but you may feel fine and up to returning. Everyone is very individual when it comes to recovery.
Please don't freak out. I am just surprised that he is not doing a sentinel node biopsy as that is standard practice here in the US. Can you call and ask the office staff or the hospital staff if that is the plan,,, or if not,, can it be added on?
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I'm a computer science researcher so it is a desk job, I can take more but I asked bz I don't want to take a week if three days are enough.
Thank you, I'll call the hospital tomorrow and see if a sentinel node biopsy could be added and I'll try to talk to my doctor maybe he's got an explanation.
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Ilaam: my advice is, take more time than you think you need,,, you could always go back earlier if you feel up to it. For instance, I had a mastectomy and I took 4 weeks off,, and I have a desk job. Now that is a bigger surgery than you are having, but anest make you feel tired. You are much younger than me and you will probably bounce back MUCH faster than I did. But I am recommending a week,, and then you could tell work,,, if I feel better,, I can come back sooner.
It is also emotionally draining. You are waiting for the biopsy results, etc. And emotional distress can be tiring too. Maybe work is a good distraction for you, to keep your mind off of that stuff. So it is really variable with the individual. I'm sorry I can't be more specific.
I've seen women on here who went back to work in 3 days,, and then, like I said, I took a month. Huge difference of time.
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Yes I think so too. A week seems a reasonable period of time.
Thank you so much glennie19
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Hi Paget's people.....My Pagets' was finally properly diagnosed in the fall of 2014 after about a year of mammograms, ultrasounds and misdiagnoses. I knew there was something wrong but wasn't experiencing any symptoms other than a thickening of the tissue around the nipple and some breast pain that came and went. At some point during that year of wondering what was amiss, a radiologist mentioned Paget's Disease but discounted it because the test results showed no evidence of cancer. So I believed the professional but still had no satisfying answers...so I went online to see if there was any information about my symptoms that could give me a clue as to what was going on in my body that no medical professional seemed to be able to figure out.... until another radiologist, during another ultrasound, asked if she could do a biopsy. I agreed readily and the results came back positive for Paget's Disease with underlying invasive cancer. Funnily enough, I wasn't surprised. The year of begging for an MRI had gone unrewarded and although may have given me a diagnosis earlier, here, finally, the biopsy told the truth. My family doctor (who agreed to the MRI but the local hospital radiology department refused it) said if I hadn't been so pro-active in getting multiple tests done, things could have turned out much differently.
As it was, I had my lumpectomy surgery done by a wonderful surgeon at Princess Margaret Hospital in Toronto who used me as an example to several interns and medical professionals, showing what Paget's Disease looks like and insisting never to ignore the physical symptoms that can trick one into believing it's something else and something benign.
My first surgery went well with no evidence of cancer cells in the lymph nodes. I needed a second surgery the following month to increase the margins but that was a breeze and there was no pain following either operation. Next came the radiation therapy that was daily for four weeks. Once again, there was no pain or side effects. I was thankful I didn't need chemotherapy and now take Anastrozol/Arimidex until 2020, see my oncologist every six months and have a yearly mammogram followed by a chat with my surgeon. And that's it. Easy peasy.
Unfortunately I was destined to suffer more from an infected seroma under my right arm where the lymph nodes had been removed and that lasted about three months, ultimately requiring a surgically implanted drain and intravenous antibiotics that curtailed pretty much all activity until spring of 2015. Ouch!
I'm not sure what the future will bring as far as cancer resurgence, but I don't think about it often. My best friend apologizes regularly for forgetting I went through this procedure. And that's the way I want it. I don't want to be defined by the cancer that caused me to have lopsided breasts for now. Perhaps reconstructive surgery is in the offing. Or maybe not.
If any of you out there have unanswered questions about any changes or pains you have in your breast, don't give up until you get the correct diagnosis. Don't believe everything you hear or read. Your situation is unique to you. Demand the biopsy (to determine if you have Paget's Disease) or an MRI, the best way to diagnose breast cancer. I know. I've been there.
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PollyPaget,,, thank you for posting your story. I'm sure it will be helpful for others! I just want to say,,, I had an MRI and it was clean,, only the biopsy showed that I had Paget's. Just wanted to mention that for our sisters who might have nipple/areola changes,, and a clean mammogram/MRI/ultrasound,,,, like I did. Insist on a biopsy, if you still feel uncertain.
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Hello again glennie and everyone. Five months on from my dmx and- apart from lumpy and bumpy scars - no further problems. However....does anyone have any idea if paget's disease breast cancer can spread to other parts of the body in the same way as more common types of bc can? I'd always assumed not, but for the past four months have had a very dull painful ache the bone of my lower leg. I'm almost always aware of it regardless of whether I'm walking, in bed etc. My gp sent me for an xray which came back clear but I'm not convinced. Atfer all, 3 mammogram s and an ultrasound missed the pagets and dcis. What do you think? Kindest regards. ..
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Hi Anne,,, I am not sure. Often Paget's has another underlying cancer, like DCIS or IDC. Was that the case for you? You had a clear xray,,, I would think if something was in the bone, it would show on the xray, but I'm NOT an expert! Do you have a medical oncologist? If so, I would go there and tell them of the issue and see what he/she says. It is very common to worry about every ache and pain after a cancer diagnosis. I sure do it. but there could be another reason for the pain. could you have shin splints from running? What did your GP say about clear xray and the pain? did he/she give a reason why you have the pain?
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Glennie19..you are so right. A biopsy seems to be the only way to properly diagnose Paget's. An MRI, however, appears to the best test to locate breast cancers.
On another note, Paget's disease of the bone is not related to Paget's of the breast. The same guy discovered both.
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I'm really concerned after having a crust on my left nipple for about 3 years. My nurse was concerned after an exam in her office. I had a 3D mammogram with small calcification. Now I am scheduled for punch biopsy. I looked at a pic of pagets and it could be an exact replica of my nipple. I'm almost 60 with no family history of breast cancer. Wondering how common?
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Hi Mwindsong, We understand how scary it is waiting for tests and results. We're here for you, in any case. You may want to read this information about Paget's Disease of the Nipple.
Taken from that page is the following:
Paget's disease of the nipple is a rare form of breast cancer in which cancer cells collect in or around the nipple. The cancer usually affects the ducts of the nipple first (small milk-carrying tubes), then spreads to the nipple surface and the areola (the dark circle of skin around the nipple). The nipple and areola often become scaly, red, itchy, and irritated.
According to the National Cancer Institute, Paget's disease of the nipple accounts for less than 5% of all breast cancer cases in the United States. Being aware of the symptoms is important, given that more than 97% of people with Paget's disease also have cancer, either DCIS or invasive cancer, somewhere else in the breast. The unusual changes in the nipple and areola are often the first indication that breast cancer is present.
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hello Mwindsong,,, as the moderators said,, Paget's is not very common. Hopefully you will get your results soon. Please come back and let us know how you are doing. Wishing you all the best.
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Hello everyone. A couple months ago I had an isolated incidence of a discharge from my left breast. I was busy with a work project and because it didn't repeat itself I thought nothing more about it. 6 weeks ago I went to my GYN for my yearly physical and nothing was noticed. I had forgotten to tell her about the drainage and what I thought was a completely separate issue- a strange little conglomeration of skin on the tip of my nipple. No redness. Itchy sometimes. No big deal. She didn't notice it during the exam.
I left the office with the usual reminder to get my mammogram. I finally got around to it yesterday. When the tech asked me if I had any changes I remembered and said yes and told her about the skin changes. They proceeded to do a dx mammogram (during the really squeezy parts i had a lot of discharge onto the plates) and after many views and discussions with the radiologist the topic of Pagets was brought up.
I'm waiting for the radiology report to hit my Docs office tomorrow or Thursday. She said that she was going to recommend a surgical consult for a biopsy. Barring any changes by the second radiologist that's probably where I'm headed.
Thanks for all the information and hopeful posts. I'll let you know what we find out. Thanks again and peace to you all in your journeys.
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Hi PugetPaget, welcome to Breastcancer.org. We're sorry for the worry that's brought you here, but glad you've found us!
Although this forum is for those diagnosed with Paget's or other less common forms of breast cancer, we wanted to let you know that we're thinking of you, and wishing you the best for benign results! There is a forum for members not diagnosed with breast cancer, but waiting for test results that you may find helpful also. We know that waiting is very difficult, so we encourage you to read/post there and meet others going through similar diagnostic procedures, such as mammograms, ultrasounds, biopsies, etc.
Hope this helps. Good luck!
The Mods
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Hi PugetPaget, sorry you have found yourself here. By any chance, did they collect any of the discharge for analysis? When I first went to the breast surgeon, he squeezed trying for some,, saying it would get checked out,, but none came out then.
A biopsy is your best bet for diagnosis. Mine could not be seen on any imaging,, mammogram, MRI or ultrasound. Hoping for the best for you. Please come back here and let us know. I check this thread often and can (hopefully) answer any questions you have.
glennie
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Hello,
I am in the process of hopefully ruling out Pagets. I have been dealing with a white crusty rash, enlarged, flattened and deformed nipple for a year now. I had a screening mammogram back in September and that came back benign. My PCP at the time thought it was Pagets but when the screening mammogram came back she told me it couldn't be Pagets because there were no tumors and refered me to dermatology. The problem has not gone away and after a severe bleeding episode with my nipple I went back to a new PCP who then refered me back to dermatology and ordered a diagnostic mammogram. This time the dermatologist ordered a biopsy, which hopefully gets scheduled this week, to rule out Pagets. I have my diagnostic mammogram on Tuesday. I'm 38 years old and told that I am too young to have Pagets. I am scared now. The information that I am getting from the health professionals differ from what I am reading online which is confusing.
Thanks
Jacque
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Hi WA, sorry that you find yourself here. Sadly, many doctors are not very knowledgeable about Paget's as it is a rare form of BC. You don't have a "tumor" that is seen on mammogram. My Mammo, MRI and Ultrasound were all clean,, the only way it was found was from a biopsy. I'm glad that you are getting one scheduled soon. Best of luck to you, and please come back here and keep us posted.
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[update] Hi all, hope you all doing well.
Two weeks ago I went through nipple/areola complex removal. Before leaving the hospital, I was asked to do an MRI to bring back with me two weeks later.
The radiologist detected a suspect zone in the MRI but thaught it was benign. Today, I had my appointment with my surgeon. Unfortunately, they found DCIS in the removed area. I will go through a second surgery in three weeks. He suggested two alternatives : lumpectomy+ 1 month of radiotherapy or mastectomy + sentinel node biopsy + immediate reconstruction with silicon implant. I chose the latter option and mu Dr approved that choice too because it is more safe. That's all.
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ilaam,,, glad to hear from you. Sorry to hear that they found DCIS too, but glad that you have a plan in place.
Speedy healing. glennie
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ilaam, thanks for updating us. I'm sorry about the DCIS in addition to the Pagets. We were praying you'd be the 3%. Wishing you a trouble free surgery and recovery! *Hugs*
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Thank you glennie and lessharp. That's very kind
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Hello everyone. I'm glad that I find this forum. My story started on december 2010 (in that time age 33) when the U/S showed BC in the left breast as well as Mammography. In January 2011 was done mastectomy with reconstruction (silicone implant)in the left breast. The analysis showed IDC (intraductale) 2.5cm, grade 2, pr +, er +, her2+, nodus 0/2. This was followed by 6 FAC chemotherapy, then followed by Herceptin + zoladex (3 years up to jun 2014) + Novladex (5 years).
During the summer of 2015 I began to experience flaky skin on my left nipple. I showed it to my gyn in september 2015 at my yearly check-up, and she recommended using some hydrocortisone cream on it. The flaking continued off and on, and I finally went to my onco-surgeon on december 2015, who recommended a biopsy. The specialist did a biopsy in january 2016 and results says-It's Paget (in situ).
On the mid of March scheduled surgery. The surgeon thing that there is no underlying tumor (U/S was clean) and he want to remove only the nipple.
At this point I am very upset because I thought that the probability of a new problem in the same breast is small (5%). The surgeon believes that Paget is a new problem and in my case is not a relapse but with good prognosis.
I am interested in your opinion regarding a specific therapy and other.
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Hi again,
Sorry I should have edited maybe my last post to add a question. I don't know the policy of the forum. Anyway, just a reminder, I am going to have a mastectomy with immediate reconstruction (silicon implant) in the right side in three weeks. I am 25 and I have an A cup. I always wanted to have a little bit larger breast but I never wanted to go through surgeries. Now that I will do it anyway, I think of telling the surgeon to put a B cup implant in the right side and to add a small implant in the left side. In other words, I want to take advantage from the mastectomy/reconstruction to go from an A cup to a B cup. If I will be obliged to change my implant every 10 years and go through surgeries different times, it is much better if at least I have the size I always dreamt of. I barely accepted my breasts because of their size and now with the scars and I don't know how the implant will look like but I don't think that I will like them anymore. Having more volume will add a good side to the whole procedure. There will be s.th that makes me glad. I'll look forward to see how my breasts changed and I'll consider the result as an improvement rather than a sacrifice and a loss. I also found that adding a little implant in the intact side will help make the breasts look more similar with aging. I will see my surgeon to discuss this before the surgery day and I'll try to convince him. I don't know yet if he will accept and what will be his recommendation but MY QUESTION IS : Do you know girls who have done this before, is it feasable I want to say? From a safety point of vue, do you think this could place me in some danger e.g. causes cancer in the healthy breast or distort my future MRI results in the healthy side? I thaught of double mastectomy but I don't really want it because of the sentinel node biopsy side effects and I assume that. Any advices/opinions/thaughts are welcome. And another request, what question should I ask before the surgery. I'm writing down any question that crosses my mind. During my appointment I haven't said a word, it's like I was unconscious. For example, I didn't ask if the mastectomy will be skin sparing or no, things like that you know. Thank you in advance.
Sorry also if I am posting in the wrong place. This thread is becoming the first place I go to when I have troubles.
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ilaam: I do not have answers for your questions, as I didn't have reconstruction. I would suggest starting another topic over on the Reconstruction forum, and asking your question there. Or maybe on the surgery forum.
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