Paget's Disease of the Breast

momtopiglet Member Posts: 7

Hi all-

During the summer of 2011 I began to experience flaking on my right nipple.  I showed it to my gyn at my yearly check-up, and she recommended using some hydrocortisone cream on it, and getting a mammogram.  The flaking continued off and on, and I finally got a mammogram about six months later.  The mammogram showed some calcifications in the nipple, so I was sent back for a diagnostic mammogram and U/S.  Both showed unusual changes, however, the radiologist was not concerned and recommended returning in six months.  However, at that point it had started to weep clear fluid occasionally, so he suggested seeing a breast surgeon.  

Two months later I went to see the surgeon, who recommended a biopsy.  It was the summer of 2012, and we were preparing to go on vacation.  I decided to put it off until I returned from vacation.  I came home and saw the surgeon again in September and had the biopsy. I was diagnosed with  Paget's Disease of the breast as my primary cancer.  No secondary cancers were found.  The entire nipple/ areola complex was removed two weeks later, followed by seven weeks of radiation.  

At this point (December 2012) I don't know if I'm going to do any reconstruction, but I might.  Paget's comprises only 2% of all breast cancers, but I would be interested to chat with anyone else with the same diagnoses.  Laughing



  • wirdgirl118
    wirdgirl118 Member Posts: 139

    Hi, momtopiglet, on Dec 6 2012, a left nipple biopsy was done on me, finally, I had been watching the nipple start acting weird in 2011. My former onco did not think it was Pagets. I changed doctors in Feb 2012 and it is my new breast surgeon who diagnosed and biopsied the left nipple. I also have a return of DCIS in the left.... The left breast had had a lumpectomy, benign, way back in 1977, then DCIS with partial mastectomy in 2005. Sounds like your Pagets is/was limited to the nipple but I would be happy to chat with you. This site is great, isn't it?!

  • kathleen1966
    kathleen1966 Member Posts: 67

    I also had Paget's, but also an underlying invasive cancer.  I believe the Paget's was related to my DCIS spreading and becoming invasive on the dermis of the nipple.  My sore was very, very small but would not go away with any cream I put on it. I actually don't know how long it was there but noticed it, then some other changes in my breast and went in for a diagnostic mammogram. You are on of the fortunate few who's Paget's was only on the nipple! 

  • momtopiglet
    momtopiglet Member Posts: 7

    Oh wow! Two responses! Cool! There was like, nothing for so long, I thought maybe I was the only one. Wink 

    I just finished up radiation last week.  They checked for underlying cancer, (MRI) and didn't find anything. However, there seems to be some confusion on the percentages of associated cancer. This site says 97% of Paget's patients have another invasive cancer somewhere else in the breast, and the Susan Love book says about 50% of patients have cancer somewhere else.  Naturally I am occassionally plagued with self-doubt about whether I made the right choice choosing lumpectomy over mastectomy, blah blah blah, but mostly I think I made a good decision.

    Just thought it would awesome to start a thread for people with Pagets.  When I was dx'd, I couldn't seem to find any threads about this, specifically, and I agonized over it endlessly before finally getting it biopsied, etc.  Of course in retrospect it doesn't seem like that big of a deal, but at the time, it was mind-numbing......

  • wirdgirl118
    wirdgirl118 Member Posts: 139

    Hi momtopiglet, you are def not the only Pagets-gal! Laughing It is hard to know what the right decision is about lumpectomy versus some other approach. Since this is my second time with cancer in the L breast where the Paget's is plus DCIS with microinvasions is back in the Left, I wondered if I should have had the Left removed back in 2005. But with every day that passes, there are medical breakthroughs and stuff gets figured out so I'm glad that in 2005 I decided to "take off an inch" (partial mast) instead of a mile (total mast), because even though DCIS came back and brought a friend (Paget's), medicine for breast cancer has advanced during that time - so has the online support like this site. And, bonus: knowing I survived it once makes me feel AMAZINGLY strong this time. I feel that leaving some of the breast in place made sure that when the cancer came back, it was only in the breast tissue, not in my body. However, now I'm ready to have a Double. "Flat is the new Black."

  • wirdgirl118
    wirdgirl118 Member Posts: 139

    Hi Kathleen1966, what was the Herceptin like? I haven't gotten to the oncologist point yet, but when my markers came back showing mine is her2neu positive, herceptin was mentioned as a possibility, an infusion they said every 3-4 weeks for a year.

  • momtopiglet
    momtopiglet Member Posts: 7

    Wirdgirl- I did decide that *if* I ever do get a second cancer (which, according to the BS, chances are increased due to my age- not sure what the latest statistics are on that, but whatever), I'm definitely going for the double mx next time around.  Not to be a pessimist or anything, but you know.....

  • wirdgirl118
    wirdgirl118 Member Posts: 139

    Momtopiglet, I applaud your realism about the *if* ... We gals are the pioneers of making having breast cancer be no big deal for those who look up to us. I didn't think I thought ahead to what I would do *if* the breast cancer came back, but I am so comfortable with my decision to divorce my breasts that I must have picked up on how matter-of-fact other gals were about their mastectomies.

  • eightblueeyes
    eightblueeyes Member Posts: 1


    I had paget's with dcis.  I had a bmx and am doing prett good right now.

  • wirdgirl118
    wirdgirl118 Member Posts: 139

    Hi to all the January girls, I was discharged from hospital about three hours ago. Both breasts were removed yesterday,

    and bs said the nodes taken from left side and from right side are ... drum roll.... negative. No cancer in the nodes!!!! She did abeautiful job sewing me up. Pain has been minimal, I am taking percoset. I have two drains on the left and one on the right, I named them Manny, Moe and Jack.

  • Nashgirl
    Nashgirl Member Posts: 2

    Hi Everyone, I am so glad that this thread has been started!  I was diagnosed (had a biopsy) 11/12/12 and didn't find anyone else at the time that could share their experience.  As you all know, there isn't very much information out there about Paget's.  

    My trouble started early last summer when my left breast and areola developed an ulcerated rash with serous drainage from the nipple.  I work outside and thought it was from the heat and my sportsbra.  (Never stopped to wonder why the other nipple wasn't affected!)  The other thing was that my breast HURT, not just the nipple, it became uncomfortable and I found that I had to wear a bra all the time.  The nipple was kind of clearing up when I went for my mammogram in October, but the tech told me that I should see my GYN as soon as possible to figure out what was going on.  My GYN took one look at it and sent me to the surgeon for a biopsy.  When I saw the surgeon, he said that it looked pretty suspect and so I was scheduled for a biopsy.  The options presented to me were lumpectomy and radiation, or mastectomy.  

    I opted for mastectomy so I would not have to worry about whatever other cancer might be lurking.  Plus, the lumpectomy was going to take a big hunk out of the center of my breast.  I knew I wanted to start reconstruction at the time of the mastectomy, so I had to identify a plastic surgeon.  Fortunately, for me anyway, I have a good friend who had BMX about a year ago.  She has been incredible about providing information and support.  She encouraged me to talk to a couple plastic surgeons to learn more about the process and my options, and to make sure I found someone I liked since I'd be seeing alot of them.

    I interviewed three plastic surgeons.  During the first interview I asked what would have to be done to the "healthy" breast to match the new one.  Turns out, quite a bit, and there would probably be multiple times that it would have to be tweaked.  Changes in my weight, age, tissue, etc over time would change it.  I'm pretty OCD about things being symmetrical, so I quickly changed my mind to have both breasts removed.  I also learned from another friend who had had one breast removed in her late 20's, that in the past 17 years she has had 8 proceedures on the healthy breast.  

    I had my BMX and TE expansion on 12/07/12.  It turns out that my left breast also had DCIS.  Two nodes were removed, and they were both negative.  I developed seromas over Christmas, they were drained but the right breast continued to have problems so I went back to surgery on 01/02 to have the right side re-done.  

    I have not had a single regret about having both breasts removed, although it has been weird to look at my new shape.  Of course, during the tissue expansion process the shape has continued to change...  

    I will see a medical oncologist at the end of the month.  I do not expect that she will have anything else for me to do.  Hormone therapy is contra-indicated for me due to a genetic thrombophilia, plus the pathology report said everything was ER- and PR -.  I do not know the Her2 result yet.  

    There is no history of breast cancer in my family, and I never had a lump or mass.  Nothing on mammogram, ultrasound and no lump on MRI.  I have been conducting my own little public service annoucements about breast cancer not always being a lump!

    My good news for today is that I had my last expansion session.  I plan to wait until this summer to have the expanders swapped out for implants.  I never, in my wildest dreams, ever thought I'd know so much about boob jobs Wink

  • flash
    flash Member Posts: 129

    Nashgirl- It sounds like you have things under control.  I hope the healing goes well.

    All-  There actually were a few threads on pagets but over the years they vanished into the archives.  Glad to see people finding each other.


  • LouieNJ
    LouieNJ Member Posts: 2

    Hi Momtopiglet and all of you ladies on this Topic of Paget's!  I am so glad to have found your posts. When I was diagnosed last year, I too did not seem to find many gals here with Paget's as their primary BC diagnosis.  I also had symptoms consisting of a 'redder' left nipple that was slightly 'flattened' compared to the right. It did not bleed or seem especially 'scaly' and was just slightly itchy. There was no lump or discharge.  I had 2 consecutive mammos and mentioned it to the Tech, but Reports did not show any obvious abnormality(which I found out later is often the case with Paget's).  I 'worried' a lot, but did not ask for a consult to a breast surgeon for almost 18 months from my first symptoms--my Primary doc did not feel that it looked like Paget's. Guess I was in major denial, too!Frown.  Anyway, when I did see the breast surgeon and had a punch biopsy, Paget's cells were confirmed on the path report. The surgeon recommended either a central lumpectomy plus radiation or a mastectomy and no rads.  After I met with my plastic surgeon about recon. options, I decided to have the left mastectomy with immediate reconstruction. Here's the timeline of my treatment--my husband added up the total time under anesthesia for all the surgeries--20 hours!(my plastic surgeon is a perfectionist and takes his time in the OR)

    11/17/11 Diagnosed with Paget's of the left nipple through a punch biopsy. No evidence of underlying tumor on MRI, diagnostic mammo or US.

    12/29/11--sentinel node bx--all four nodes negative! 

    1/19/2012--left simple mastectomy(are any of them really 'simple'?), and left breast reconstruction using SIEA flap(similar to a DIEP flap-no abdominal muscle sacrificed). Final path report showed Paget's disease limited to the nipple epidermis--no underlying in-situ or invasive carcinoma in the breast parenchyma or lymphatics. 

    1/31/12-second surgery to remove 'banked' abdominal tissue that had been 'buried' with my belly button just in case the SIEA flap had not taken, and then completion of the abdominoplasty.

    7/13/12--Stage 2a surgery to create a nipple/areola using a C-V flap technique, revision of the mastectomy defect(scar tissue), and a breast lift on the right side/natural breast for symmetry.  

    12/20/12--Stage 2b surgery to fix small "dog ear" on the edge of the abdominal scar; small amount of lipo of inner & outer thighs and flanks--the fat was transferred to the "foob" into a divot that was left from the sentinel node biopsy. Also had some of the fat grafted to the top of the natural breast for symmetry.  Will have tattoo of the nipple/areola at a future date.

    I also read that most Paget's(as you said, about 97%) will have an underlying invasive tumor or DCIS. My breast surgeon did not recommend that I have the other breast off prophylactically.  I am being very diligent and will ask her at my follow-up in May if I should have have an MRI of the remaining breast.   Wishing all of you the best.

    Lou Ann

  • momtopiglet
    momtopiglet Member Posts: 7

    So cool that there are now a bunch of us all on one thread!  Yay us! Wink

    Wird- sending lots of gentle hugs and best wishes for a totally uneventful and quick recovery!  

    Nash and Louie- you guys have been through a lot!  My surgeon never really mentioned the option of mastectomy, even though I knew I had that option.   I have to say, I have mixed feelings over the resulting asymetrical appearance, and I'm still trying to decide whether to do any reconstructive surgery or not.

    As far as follow-up goes, my BS is having me get a breast MRI every year for the next five years, and follow-up mammograms at the six-month mark. Is that basically the standard follow-up for everyone, or just Paget's girls, or does anyone know?

  • new2bc
    new2bc Member Posts: 252

    My pathology report showed some surprises consisting of paget's and a few other small cancers on the left breast. I was told that I may have only 2 different cancers before the surgery. But paget's on the nipple and another cancer was a surprise after the surgery. I will know the details after seeing my pathology report and meeting the oncologist for the first time.

    My mamogram only showed some calcifications in a circular pattern. There was no lump. The biopsy showed ILC. The MRI pointed another suspicious area. I decided to do double mastectomy since ILC is bilateral. There were 2 lymph removed from the left underarm which are clear. The sentinel biopsy was clear.  Now I am waiting to meet with the oncologist to see what he recommonds. 

    I just want to let you know that I am an example of a person having paget's combined with other cancers in the same breast.  I had dense breasts which may have hidden some of my cancers or the cancers were too small (mm) to show up in the mamogram. Do not trust that mamogram will show everything and follow up with an MRI.


  • Jinkala
    Jinkala Member Posts: 133

    I had a sore nipple that just wouldn't heal up for almost a year before I went to the doctor and I didn't even go because of that but went because I had a painful cyst right below my breast that was making wearing a bra difficult.  The nurse took care of the cyst (drained it) but was really concerned about the nipple lesion and set me up with a breast specialist.  The specialist did a biopsy and that came back positive.  I had read about Paget's but it was so rare and almost always occured in much older women that I just figured my issue was a skin condition.

    Anyways, since the diagnosis was Paget's, I then got sent to a breast surgeon who was not convinced by the mammograms and ultrasound coming back negative and she sent me for an MRI.  Up until that point, I was looking at a lumpectomy but when the MRI found DCIS, I was bothered by the fact that the mammogram and ultrasound didn't pick it up so I decided to play it safer (and hopefully avoid having to go through  radiation) and opted for a mastectomy on that side.

    After the surgery, the pathology came back with an added finding of a small area of IDC right below the nipple.  Because of that and the fact that it was high grade and HER2+, I ended up having to do 6 doses of chemo and a full year of herceptin.

    I sometimes wish I had seen someone about the nipple sooner but there's no guarantee that the other issues weren't already present even then.  The cancer was still caught 'early' and there has been no evidence of it spreading outside of the breast so it's hard to say whether finding it six months or a year earlier would have made any difference.

  • tovahsmom
    tovahsmom Member Posts: 8

    I haven't been on here in a while.

    I had DCIS 4 years ago, had two lumpectomies and radiation and all subsequent 3 and 6 month checkups have gone well.

    I just discovered a flakiness and discoloration to the same breast this morning after taking a shower. I don't know how long its been there since I haven't been paying much attention to my breasts. I have my annual with my breast surgeon in July along with my yearly mammo. I am wondering if I ought to call him and go in sooner.

    Thanks if you have any suggestions for me.

  • tovahsmom
    tovahsmom Member Posts: 8

    In response to momtopiglet:

    After my breast cancer surgery, I was followed every 3 months for a year. Then they moved it to every 6 months for 2 years. Now I am back to annually.

    I don't know about Paget's, but shorter intervals between checkups seems to be the norm.

  • tovahsmom
    tovahsmom Member Posts: 8

    In response to LouieNJ above:

    You mentioned a punch biopsy. Do the biopsies of the nipple area hurt? The biopsies for my DCIS were very painful. My calcifications were very close to the chest wall and therefore hard to get to - maybe that's why it hurt so much. So I am just wondering about the biopsies of the nipple area. My mom had a biopsy for her ILC and she told me they went straight through the nipple. I'm wondering if that's what they do with Paget's. These biopsies make me want to get rid of my breasts altogether.

  • LouieNJ
    LouieNJ Member Posts: 2

    Hi tovahsmom!  When I had the punch biopsy, it was done in the breast surgeon's office at my first consult, and she happened to have 2 or 3 students or Residents rotating with her that day too. So everybody watched! I don't recall much pain and the procedure was quick, but I do remember keeping my eyes on her wonderful nurse while she held my hand during it.  I think I was just happy that the surgeon was taking care of the biopsy right then instead of having me come back at a later date and prolonging the anxiety!  As I had said in my post above, I waited too many months before making the appt. with the breast surgeon.  Maybe you could put a call in to your surgeon's office and describe your symptoms, and see whether he feels you should let them take a look before July--for your peace of mind. Blessings to you!  Lou Ann

  • I would definitely suggest seeing a doctor.  I had no symptons except terrible itching and a tiny patch of flaky skin on my breast several years ago.  I recalled having seen an email regarding Paget's and just had a gut feeling about it.  It was in fact Paget's. Following a biopsy,  I considered all the options and decided on double mastectomies for the sake of peace of mind. Nodes were taken from both sides and all were blessedly clear. It was absolutely the right decision for me.  My cancer was accompanied by DCIS which was undiagnosed presurgery.  (I had totally clear mammogram.)   I opted for simultaneous reconstriction.  I had no chemo or radiation, but have consulted an oncologist to know what to be on the lookout for should this cancer pop up elsewhere.  I am now 3 1/2 years post surgery  and doing really well. Have annual checks with both plastic surgeon and cancer surgeon offset 6 months so someone is seeing me every 6 months to keep an eye on things.  I have never regretted my treatment choice for a single moment. My husband was supportive then and remains my biggest supporter.  When I was diagnosed information was really scarce and there was nothing on this site.  I am glad to see that there is more information now and more support available to gals who get a Paget's diagnosis.

  • debjj
    debjj Member Posts: 1


    I just found out that I have my mastectomy scar! 

    I had cancer in 2005 in my left breast and had been clear until I discovered a red mark on the scar that didn't heal about six months ago. My family doctor dismissed me and then finally I went to my old breast surgeon and he thought it was skin cancer and took it out in his office - did a biospy and it came back Pagets. Now I am going for radiation in April.  

    So happy I was able to find others with Pagets.

  • pananya
    pananya Member Posts: 1

    Hi everyone,

    I don't know yet if I have Paget's, but I am very scared that I might.

    I just recently turned 21, and I do have a background of eczema, so when only my right nipple started to peel, flake, ooze yellow-clear fluid, and have intense itching months ago, I treated it like eczema with mild steroid cream...but it always came back.

    Eventually it turned into a large ulcer surrounding my nipple; it was as if the skin had fallen off on its own. I thought it was just bad eczema, but the lesion wasn't healing, so I went to an Urgent Care center, thinking it was an infection. The doctor was very worried about it and he prescribed me TWO kinds of antibiotics (cephalexin and doxycycline).  I have been taking the antibiotics for a few days and the ulcers are scabbing over, but there is intermittent sharp pains and burning in my right breast (the one with the ulcer), and it is still occasionally oozing some clearish yellow fluid from the side of the scab.

    I just got back from a follow-up appointment with my primary doctor, and he told me to come back in two weeks since my ulcer looks like it's healing. I just felt like saying, "Well of course it is healing, I'm on TWO KINDS OF POWERFUL ANTIBIOTICS!"

    I'm just so frustrated because they won't let me do any tests right away... They won't refer me to a breast specialist or a dermatologist, schedule me a mammogram or anything! Instead, I have to wait 2 weeks and see my primary doctor again, and go from there.

    I'm so upset because I know I am really young and Paget's is very rare, but something just doesn't feel right, and I feel like the doctors aren't doing much for me.

    I can't eat, I can't sleep, I couldn't focus on my finals this past week, and now I'm on spring break for the next two weeks, but I don't think I can enjoy it at all because when I get back from break is when I see the doctor again.  The waiting is killing me, I just wish someone would test me or something becasue I can't live with this uncertainty. Cry

    I've been researching Paget's and I read that ulceration of the skin can indicate an already advanced form of Paget's.  The thought of waiting any longer to find out if it is Paget's or not scares the heck out of me!

    And if I do have it, I'm scared to lose my breast! Goodness gracious! I just graduated from high school 3 years ago...

    Someone please respond and please help! I am panicking here, and I don't know what to do. Advice? Anyone?

  • Jinkala
    Jinkala Member Posts: 133

    Ask them to just do a biopsy for peace of mind.  It's a simple procedure where they numb the area around the nipple and then take a small piece to send to the lab.  It doesn't hurt at all when they do it but they don't warn you that once the numbness wears off, it stings like crazy. 

    I know it's scary but it's extremely rare at your age.  I was 46 when I got mine and they told me I was really young to be getting that type.  Just focus on one thing at a time and try not to think about the 'what ifs'.

  • ValL
    ValL Member Posts: 11

    May I ask how the doctors find Pagets?  In the early stages can an U/S, Mamo and MRI miss it?



  • Jinkala
    Jinkala Member Posts: 133

    Ultrasound, Mamo and MRI are used to find cancers inside the breast and Paget's is a cancer on the surface of the breast (nipple area).  Mine was found because it presented as a sore, chapped area that just wasn't getting any better and was confirmed to be Paget's by a punch biopsy of the affected area.   Even after they confirmed it was Paget's, the Mamo and Ultrasound didn't show anything suspicious.  An MRI found a small area of DCIS and the pathology post-surgery found a tiny spot of IDC. 

    I would think that if there was no visual clues that the cancer was there, it wouldn't be diagnosed as Paget's and would be instead classed as another type of breast cancer.

  • synteelife
    synteelife Member Posts: 1

    I am going to the surgeon at 9:30am on March 27th. I am terrified.  Not of losing a breast. That does not define me, I just want to continue to live long enough to be a grandma. I am 47 years old, just had breast exam 6 months ago.  Checked out great. But I have had this itch here and there for about two months and a small area around the nipple has hardened skin.  Saw the OB BYN this morning and she referred me to a surgeon, she said it was because it would take too long to get appointment with a dermatologist.  She asked me if I had heard about Paget's disease and I began to sob in her office.  I will find out hopefully in a few days if this is Paget's.  The waiting is unbearable. 

  • moderators
    moderators Posts: 6,946

    synteelife, we're sorry you're dealing with this worry! As well as all the supportive information you'll find here in the forums, you can learn more about Paget's at the main site in the section Paget's Disease of the Nipple, including information about symptoms and diagnosis, and treatment.

    Please come back and let us know how your appointment goes!

    • The Mods

  • momtopiglet
    momtopiglet Member Posts: 7

    I'm so sorry, synteelife!  like Jinkalas, mine was an odd, flaking area that very gradually grew in size and began to bleed.  (Though not a lot).  My surgeon didn't do a punch biopsy; he actually did an open biopsy, with the hope that it could be removed all at once with clean margins (hahaha, what an optimist!) Cool Nice thought, but no.  Other than a small calcification in the nipple appearing on mammography, nothing else showed on mammo or MRI.  I guess after doing as much research as possible on Paget's, and talking with both the surgeon, radiologist and MO,  I just wasn't too worried.  (Clearly I'm also an optimist, like my surgeon. Smile )  Hang in there!  Not knowing is the worst!

  • CassDugan
    CassDugan Member Posts: 24

    This is a club I hate to join but...  I was diagnosed with Paget's on my left areola last week.  I'd noticed a small irritated patch of skin in May 2012.  Long story short, I started with a new PCP in March.  We did a 3mm punch biopsy that came back positive for Paget's & HER2+ last week.  Since then, it's been a whirlwind of appointments with the facility to which my PCP referred me and to another where I'm seeking a second opinion.

    News is as good as could be so far - mammogram clear except for sclerosing adenosis, ultrasound of the affected area clear, fine needle aspiration biopsy of a lymph node negative for cancer cells.  I had an MRI done this morning and am awaiting those results.  From what I've read, I'll need to choose between a lumpectomy + radiation or a mastectomy; and whether to have reconstruction done.

    The lumpectomy doesn't feel like a big deal to me.  My nipples have always been inverted so that area has never been especially sensitive and is definitely not an erogenous zone for me.  My left side's always been a bit bigger, so this might even things up.  A mastectomy obviates the need for radiation, which is good.  I'm currently a full time student and would hate to derail school because of radiation fatigue.  On the other hand, I hate to remove more tissue than is absolutely necessary.

    Can anyone comment on their experiences with radiation for Paget's?

    Thanks to everyone for sharing their experiences!

  • momtopiglet
    momtopiglet Member Posts: 7

    I just finished radiation for Paget's during the fall of 2012.  While I was somewhat more tired than normal, and I did need to make some adjustments to my regular schedule (primarily cutting back on my exercise routine, and only taking the kids to activities that were absolutely required) it was entirely doable.  Everyone has a different experience with radiation, but I think it would be pretty reasonable to continue as a full-time student while receiving radiation.  If you post on the radiation boards, I'm sure they could give you some great insights.  I know most women continue working full-time while doing radiation on their lunch breaks, but of course everyone is different.