Paget's Disease of the Breast
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Leigh, I'm sorry to hear this. If it is only Paget's, you do not get chemo for it. It depends on if there is any underlying other type of BC. I had DCIS in that breast too, but again, no chemo for that. With Paget's, your treatment choices are mastectomy alone, or lumpectomy with rads. If you've already had rads on that side,, I am not sure you can get them again. I had opted for a mastectomy cuz I didn't want to do rads,, and since my breast are on the smaller side, once they took the nipple and a margin,, well, there wouldn't be much left anyway. So that's why I opted for the MX.
and it MIGHT NOT be Paget's,,, it is always possible that it is not. I'll be thinking good thoughts for you. Let us know when you get the results.
glennie
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So, I have finally gotten a date for my mastectomy, Oct 21st. Meeting with Breast Specialist and my Plastic Surgeon over the next two days. I am opting for both to be done (DMX) with immediate reconstruction. This has been a struggle for me...but I know my person and prefer to reduce risk of recurrence as much as possible by removing both breasts. I am a worrier....and would prefer to live the rest of my life without having to experience this again, or worry much about it coming back. My right breast is much larger and will require surgery to match, anyway. With the Flap gone, I would lose that opportunity to use this fat and have yet another scar and surgery should I have a sequel on the the other side.
Doing DIEP, but will be a small C rather than DD's. Trying to fatten myself up!
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Pizza! Milk shakes!
will be thinking of you on the 21st. Check in when you are feeling up to it and let us know how you are doing. If you have not been on the recon part of the forum,, you may want to read around over there. Know what to expect and all.
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tI found a dry spot on my nt breasipple last June and insisted to see a gyn & dermotologist - they both thought it was a rash - told me to go home and cream it for 2 weeks - if it does not go away come back. I fortunately, wanted a biopsy - it was Paget - which goes undetected by mammograms - they claim it is rare but UCFS in San Fran told me they see it once or twice a week - if it is not removed it will create further problems and spread into a tumor and lymph nodes - if it did not already- I caught it at 0 stage .I have talked and informed over 100 women about this disease - no one knows about it nor are we educated by our doctors - esp. since it is not detected by a mammogram - I keep asking why we are not told about this disease and continue to educate others - I do believe that breast feeding is healthy for the breasts and baby -Tricia
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I have kept up with all your stories and I am amazed how there are more women with this disease. I was diagnosed August 2010. I woke up one morning October 2009 and it looked like my nipple had been cut and it was red but did not hurt so I really did not think much about it. Time went by and it did began to discharge and crust. Then it got real red and inflamed and I remember a email going around back in 2001 where a women told her story of going to the doctor with this problem and he treated like a skin problem and time went by she had a mammogram which did not show anything. She went to another doctor and he did a biopsy and showed it to be Paget's and it had progressed so she had double mastectomy and had to go through treatments. She had also posted pictures of her nipple and I know they say you are not suppose to diagnose yourself over the internet but I had all the symtoms and my nipple looked just like hers. I went to my primary doctor and asked her if this was paget's and she sent me to a BS and I asked him the same question and he told me no and treated like a skin problem. I made a few more visits and then it got very painful and started throbbing so I went to my GYN and I asked him if it could be Page'ts and he asked me if i had anything else like this on my body and i said no so he said it was time for a biopsy and it came back as Paget's. Sept.14,2010 I had double mastectomy and no treatments. When I came on this site back in 2010 trying to get information there were only 2 other women on here with Paget's. This is a rare BC and is hard to diagnose so I have tried to get my story out there for other women who have these concerns. There is more information now and sites like this have really helped women that have to go through any kind of BC. Sometimes we have to be a little pushy to get anwers so don't be afraid to get a second opinion.
Ya'll are in my prayers.
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Hi Debbie. I too remember that email! That is how I self-diagnosed! I was lucky that my GYN took me seriously and sent me to surgeon for a biopsy right away. Although he was "sure it wasn't Paget's",, and was quite surprised that it was.
I have tried to spread the word about these symptoms which no one ever talks about at "awareness", as Paget's is not seen on mammogram or ultrasound or MRI. I know,, cuz I had all 3,, and it showed nothing. Only the biopsy told the tale. Good for your GYN for sending you for the biopsy. And yes,, you gotta be pushy,, cuz it is our health.
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Got my last two tubes out today., one week from BMX with immediate DIEP. I am healing very well, but some additional numbness under my left arm I don't like.
My biggest hurdle is sleep and overcoming what I think are withdrawal symptoms from the surgery opiates, etc. Every day gets better.
Really wanting to be mindful of the lymphadema, but also not go crazy about the risks. There is so much conflicting information out there it makes my head spin. Move around, don't move. Don't get bloodpressure taken, blood drawn, sleep on that side, etc.. But my breast surgeon dismisses all that and says the only proven risk is sauna use. I'm erring on the side of caution. ..but don't want the fear to rule my life.
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There are no controlled studies on what exactly sets off LE,, and believe me, breast surgeons are NOT the most knowledgeable about it. (mine certainly isn't) It is possible that a needle stick, or a tight BP cuff could set it off. If you are able to use your good arm for those things, I would recommend it. And come over to the lymphedema forum,, ,tons of info over there. StepUpSpeakOut is another place with lots of info too. Almost everything that I learned about LE,,, I learned here. A few things from my LE therapist. But mostly here.
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thank you Glennie, WILCO.
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Hi,
I too was diagnosed with Paget's 9 months after self-diagnosing myself December 31, 2013. I told at least 6 different doctors that I suspected Paget's Disease, and all said "no, that it's too rare". All thought some type of skin problem since I worked out a lot, and also did a lot of running, OBGYN even thought I needed a better sports bra. Had a few unrelated biopsies after Diagnostic Mammo, as well as Exploratory Ductal Surgery/ductal excision with yet another biopsy by a general surgeon that looked me in the eye and said I did not have Paget's. PCP did the same. Took all my records to good Breast Surgeon, when it was time for another follow-up mammo. She suspected the same as me, and did a nipple biopsy right in her office, simple as that, and I found out the bad news the following day, August 27, 2014, that I was right....Paget's. I'm sure because of the length of time it took me to be diagnosed, I may have been spared what I've been through since that time. After 2 MRI's that followed, discovered 2 tumors and that I had Invasive Ductal Carcinoma...it had spread. Went through 6 chemo treatments before having a BMX March 25, 2015. Last Friday, October 30, had "exchange" surgery, tissue expanders to implants. I have 2 Herceptin treatments left since I was classified as HER2+. And, can't wait for my hair to be normal again, it has been growing in as "chemo curly". I truly feel there are more Paget cases out there that would increase the low percentage of a Paget diagnosis. I agree with Glennie that it is never discussed and should be. Women need to be more aware of Paget's and what to look for, and even more so, the medical field obviously needs to be more educated about it as wel,l and not take patient's suspicions so lightly, because it appears that it's not as rare as they say. The doctors need to get their Paget suspecting patients some answers before it's too late, just by simply doing a nipple biopsy in their office.
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ladyduffer,, sorry that you had such a hard time getting anyone to "believe" you. I had 2 doctors tell me that they were sure it wasn't Pagets,, and I think the BS did the biopsy to humor me. He seemed really surprised that it came back positive.
Not every breast cancer can be seen on mammogram, etc. I think that if certain organizations (Komen, are you listening?) are going to focus on "awareness" instead of research,, they need to spread the "awareness" of the signs and symptoms of these more unusual breast cancers. Not all present with a lump.
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Awe, thanks Glennie. Sorry about the rant, but just reading what everyone wrote here (because it's still the first page that comes up when I sign in since it all began), it gets me upset at the medical field that won't listen to their patients. I keep saying when I'm hopefully done with journey soon, that I need to contact those that didn't believe me so that they don't overlook someone else. I see you mentioned that your BS is a man, and I have nothing against male doctors, BUT, I think the women doctors are not as closed minded about their patients as the men tend to be.
You are so right that Komen and all organizations need to focus on "awareness", and spreading the word of the unusal types; because we all know that the sooner it's diagnosed, the better the outcome. I believe what saved me was the fact that I told a good friend about my suspicious nipple, and she insisted I get to a doctor ASAP because her mother had Paget's. And, that's the first time I ever heard of Paget's.
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I had my annual mammogram scheduled 3 weeks ago and due to prior biopsy (2013), they did a diagnostic mammogram. They found "suspect" mass and did ultrasound. I was immediately schedul d for a stereotactic biopsy. The next day I was told I had Stage 0 non invasive and was given the name of a breast surgeon. I had not called to make the appointment and received a call from same Dr. The next morning advising they ran my biopsy through pathology a 2nd time and have decided to wait and look at it again in 6 months. The anxiety and fear took over so I opted for a 2nd opinion from an oncologist and requested a lumpectomy to remove these (2) "suspect" masses. He told me it was overkill at this point but set me up with a breast surgeon for consult. She too protested but scheduled it as it was ultimately my decision. I am scheduled for 12/1. The surgeon called me that same day, 3 hours after my appointment. She explained she was reviewing my films and pathology report and found signs of Pagents and this had to be removed. My anxiety is over the top, would anyone have even looked had I not persisted?
Scared and waiting...
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TracyMay, we welcome you here, and are sorry for what you are going through with a trying to find an explanation of your symptoms. It sounds as though you may need to follow up with the surgeon who actually reached out to you. Indeed, sometimes we are forced to advocate for ourselves )-: Pleased know you are not alone, and let us know what she says.
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TracyMay: so sorry for what you are going thru. Sadly, you must be your own best advocate for your health. We are here for you. Ask questions, rant and rave. We've all been there.
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thank you Glennie, I am learning more and more each day that I have to push them. I felt when I told them I wanted a lumpectomy to remove suspect spots, they were dismissive and made me feel paranoid and hypochondriac. Only to find out hours later they had not even reviewed the films and reports "they" required I brought in. I don't have the classic symptoms I see on here for Paget's, only constant itching on left side I believed to be dry skin. I just want to know that whatever choice I make in my treatment is my choice. Is it
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TracyMay: I hope you find some doctors to listen to you. How awful that they were so dismissive and HAD NOT even looked at your films and reports. That makes me so mad.
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Hi Glennie, Sorry slow to reply. It is sad that we do have to take matters into our own hands. I think we are very lucky to have the internet which I think has valuable information on the right sites. I have had some doctors tell me to not go on the internet and try to diagnose yourself but I am proof that it helped save my life. I also try to tell my story to other women for awareness and they may know someone else that is having these same concerns.
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hey everyone, I'm new to this site, and posting in forums in general. For the past month and a half my right nipple has been peeling, itchy, lighter in colorand dry. (I don't tan, haven't changed any soaps, no known allergies) At first I ignored it about a week, then I put Vaseline on it, then tried lotion, nothing worked, just made it burn some. Every few days the skin flakes off. My whole nipple she'd like I'm a snake or something. About a week or two later I was having a pain in the same breast on the left side, that lasted a few days and stopped, but the peeling continued. For the past few weeks itching has started. I called and made an appointment with a nurse practitioner at the gyno office. She said since it wasn't red she didn't think it was fungal or anything and just told me to buy cortisone 10 and use that for two weeks and see. It's been a few days and so far that hasn't helped at all. I took a bath tonight and all of the skin on my right nipple peeled off again. I'm only 20 and I know pagets is really rare, I just thought it was strange that it's only on one nipple. Just wondering what y'all think! Thanks
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Jess, I'd go to a dermatologist. They biopsy if they see anything concerning, and will help with the skin problem if it isn't
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Agree with that,,, I would see a dermatologist.
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Thanks for the replies! I'll have to make an appointment. Does it sound different then what y'all had or know from pagets? I'm just confused and ready for it to go away. The doctor didn't seem super concerned that I saw, just to try cortisone
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I think at twenty it is really unlikely to be anything but a skin issue. Nothing is impossible, but any kind of breast cancer at your age is about as close to zero as it can be without being zero
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Back in April 2015 my wife's nipple started to have a small amount of discharge, then redness, flaky skin on her nipple. When she would take her bra off for a shower at night her bra would stick to her nipple. Finally went to her OBGYN for a visit and brought up the nipple issue. At first he said it was nothing --- so we pushed. He thought maybe that she was producing milk for some reason and sent her for blood work to see if her pituitary gland acting up. Well that blood work came back as being fine. He did schedule her have a lump checked out in her right breast
Long story short -- wife ended up having breast cancer -- the nipple issue was pushed to the side so to speak during all of the biopsies and double mastectomy. Well during her double mastectomy they did not spare her nipples. After the surgery they do a full pathology on all tissue taken... my wife's nipple had cancer detected on it -- I can only assume it was paget's. Needless to say her nipple issue led to us finding out about the other cancer(s) in her breast.
As others have pointed out -- if you don't feel comfortable with the Dr's thought process or they do not seem concerned find one that will take your concerns seriously.. you have to be your own advocate. Good luck -- wish you the best
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Jess, mine was a rash on my areola that looked like a patch of dry skin. It would come and go. Didn't matter whether I put cream on it or not,,, it would be there for a few days and then disappear. But as time went on, I thought the skin was getting a little thicker there. I was going to bring it up at my next GYN appt, but over Memorial Day weekend, it cracked open and bled,, and that freaked me out. So I called on Tues, saw them on Weds,, mammogram, etc followed. Everyone thought it wasn't Paget's but I got a biopsy and it was.
Your chances of having Paget's is small as it is rare,, it is also rare to have BC at your age,, HOWEVER,, it can happen. So it is wise to check it out. A biopsy would not be out of order,, cuz why is the whole skin peeling off? I hope the derm. can give you some answers.
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Hi Melkirk. Sorry that you will have to go back in for the BMX-but in my experience, I felt a relief. My story is that I had calcifications on an annual mammogram (age 42)-follow up tests then biopsy. I had a baseline at 35 and then regular mammograms at 38 when my mom was diagnosed with er/pr + breast cancer, stage 3b. hey diagnosed me with DCIS, high grade, criboform. I was worried about the nipple because it was red, itchy, little oozing and looked cracked a little. NO ONE was worried about it. About a month earlier I had called my ob/gyn who told me to use a topical cream-it worked a little-I thought, but I just knew something more was going on. So when I was diagnosed with the DCIS, I asked if I could please have a punch biopsy when I was under for the lumpectomy for DCIS. Thankfully the surgeon agreed. (The breast health center here in Omaha said they only saw 4 cases prior to me and I just didn't fit the norm--I think because thankfully it was so early) The results came back clean, yet not the margin they wanted on the anterior, m for the DCIS, but I did, in fact, have Pagets. I knew in my mind and gut that it was Pagets, so it was not a shock to me. I had my bmx surgery February 2013-18 days after the lumpectomy and SNB (which thankfully was clear). Almost 3 years later, the scars are there--but have faded so much!!! They are battle scars, but thankfully I did not have to do chemo or radiation, hormone therapy or anything. I had reconstruction beginning with the expanders, followed by implants and then nipple reconstruction via skin grafting from surgical scarred area. I consider myself soooooooo lucky and I am glad that I was persistent and kept asking when I knew something was wrong. You will do great. If you want to ask me anything-feel free to pm me or use this board! Blessings and peace for a wonderful Holiday season!
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Hello ladies,
I am 25 and I've been diagnosed with Paget disease last week. I had lately (for 4 months) a supersensitive nipple, it was flat sometimes and normal other times. Slowly, I started to feel discomfort when I don't put on my bra at night, even with the bra I feel better when I put a cotton disk just on my nipple. It burns sometimes and I noticed its color changed (it is clearer.) I was worried and saw two gyn. One told me it is nothing and one told me it was vitiligo which chocked me and so I went to see a dermatologist just a day after. The dermatologist told me it is not vitiligo and it is more likely to be eczema and there's nothing to be afraid of as I am young. She prescribed me cortisone creams and told me to return with an anesthetic product for a biopsy in case the cream dosn't heal me. I made researches on internet and read alot about Paget. Though, I was not scared at all. I thaught the biopsy was just for my mind peace. Two weeks later, the results have shown I have Paget. I was schocked and desesperate. At that time, this disease meant for me only one thing, the worst thing. I read many things and stats on internet and I was scared. I saw the breast cancer specialist this week and he asked me to make mammography and ultra sound on both sides. He also told me he saw many cases like me and that for young ladies, it is rare to find another tumor inside the breast. I read the opposite on internet. This doctor calmed me down and I went out of his office relatively released. He also told me he will remove a little triangle from my nipple+areola. Now, I am accepting what I have and I am really calm, not scared.
I don't have results or tips to give you, as I am in the very beginning of the journey, but I just wanted to thank you as reading your posts comforts me and the way you are dealing with the disease is quite encouraging
It caught me in the middle of my phd, I was making plans for my postdoc, my wedding which was planned for next year..I still have questions in my mind not about the treatment process as I am ready to make anything that makes me recover,it's all about recovering possibilities. I am only 25, would I overcome this and have a long normal life just like other people of my age? would I be able to give birth? would I live in peace again or would I spend my life afraid of having it again? Do people recover from this? Positive testimonies make me feel good but I am unable to find a 70 year old lady who had Paget in her twenties, mainly because I didn't find any, maybe there are many. This doesn't allow me to make conclusions as there are many breakthroughs in this field, but I feel that there is an obscur future, in the long term, that even science/statistics ignore and that we are going to discover by ourselves.
I was overthinking lately having all these questions in my mind with no answers found and with doctors telling me to wait and that this will be delt with step by step. Now I am mentally tired but peaceful, I give up thinking. Whatever will happend, let it be.
I hope we all recover with no pain. take care girls..
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ilaam: I'm sorry to hear that you are so young with joining this club. What is your treatment plan? Lumpectomy (removal of the nipple/areola and a clear margin) plus rads? That is standard for Paget's. Or mastectomy. Not to scare you, but everything I have read has told me that it is rare to have ONLY Paget's, that there is usually another underlying condition, like DCIS,, which I had.
Here's the article about Paget's found on BCO.
Paget's even with DCIS is a simple treatment.. Lumpectomy plus radiation, or mastectomy. No chemo. There are many women on here who have had BC treatment and had a baby afterwards. As you search around on this forum, you will find them.
Let me know if I can help in any way. glennie
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Thank you girls.. As I haven't done any mammo or ultra sound yet, the cancer specialist told me that, for now, he will remove a part of the nipple and areola, he didn't szy anything about removing clear area or rads, that depends on the results of the mammo/ultra sound. I will ask him next time (in three weeks). I read that generally there is something under Paget, the doctor told me that it is rare to have another thing when we are young. I will know soon but I keep praying that is all I have, hoping I won't be disappointed later..
I don't have questions but if you do know cases of women who completely recovered from Paget plz let me know.. Sometimes I feel that I have s'th very dangerous and very mortal and other times I feel very confident that I WILL recover and that this curable.. I don't know..
Thank you anyway for your replies. It feels good to talk to people who've been in the same experience.
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