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What were your Pagets symptoms?

Sunflower182 Member Posts: 4

Hi everyone,

Just searching for advice- I’ve been worrying about Pagets for a few months but primary care doctor and OB does not seem to believe anything is wrong. It started last August when my left nipple was scabbing- it was yellow/whitish tinge and wouldn’t actively discharge but when I looked at my nipple it just looked like a little scab. I showed my PCP and she felt around my breasts and sent me to an US. I asked her about Pagets and she replied, “oh no it’s not that, you’d have noticeable skin changes” which I didn’t, just the peeling. I had checked my bras daily and never saw discharge-just the scab.

So I went to the us, results came back for no further testing and that was it. Followed up with my OB in October due to getting pregnant, and she did not seem concerned either. She said hormones can cause these changes and only to worry if it started bleeding or getting worse. Here to February and the scab is still there (after peeling it off in August) and it’s yellow. No noticeable skin changes other than itching from time to time but that’s in both breasts and I’m going to assume it’s from being pregnant. I’m worried sick because a) doctors might not take me seriously being I’m 27 yrs old and b) I have twins due in June and seriously hope there’s no underlying issues :(

So what were your symptoms? Should I be this worried


  • MBPooch
    MBPooch Member Posts: 40

    Sunflower182 - Your symptoms are very similar to mine. I had ongoing issues for about 6 months before my diagnosis in October of 2017, I was 45. There was never any itching, no bleeding, just a continuous cycle of peeling. The only other symptom I noticed was that my left nipple always seemed harder or more erect than the right. my Gyn referred me to a dermatologist just to be sure.

    If you haven't already try an over the counter cortisone cream and see if that helps. I tried that as well as a two week prescription both to no avail. Dermatologist finally did a punch biopsy that confirmed Pagets (Punch biopsy is the only way to confirm Pagets). In those next few days all the Doctors we visited with could not believe my diagnosis. My nipple looked completely fine to the naked eye. I had an ultra sound as well which did not detect anything but an MRI did find the Pagets as well as 17mm of DCIS underneath.

    Pagets is extremely rare, especially coupled with your young age. Trust your gut and make an appt with a dermatologist to ease your mind.

    Keep us posted!

  • alto
    alto Member Posts: 82

    Paget's can only be diagnosed with a biopsy. Clear mammos and ultrasounds don't mean anything.

    An MRI was the only diagnostic that showed it - it lighted up in that area. They'll usually start you with a biopsy - it's cheaper, easier to do, and more conclusive.

    My Paget's started with some light crusting at the center of the nip - almost like dry skin cells. I'd scrape them away. Then I noticed a little injury to the side with oozing (I thought I must have scraped it on my watch or something). That healed, and I thought it must have been nothing. Then I thought I noticed the nip receeding, but couldn't be sure. Then there was a red itchy spot. All this happened over the course of a few years. Then it sped up - the red spot grew, over the course of several months, to double the size (about the size of a dime). The skin was pink-to-reddish, had a distinctive edge. I went to the dermatologist and was visually diagnosed with eczema and given creams. Over the course of the next year, the spot doubled in size again, now covering almost the entire areola. Seemed like nip was receeding even more. I went back to the dermatologist who did a punch biopsy. Paget's. Even the cancer doctors that looked at it said it "didn't look bad" - it was just a pinkish-to-red itchy patch, slightly shinier than my normal skin; but the pathology said there was extensive Paget's disease. So there was no bleeding or pus, as you see in some cases, just an eczema-like rash. It wasn't peeling or scaly (as my dermatologist said she usually sees these cases), it was more shiny pink with a defined edge, and occasionally looked reddish at times. In my case, all the symptoms appeared only on one side. Cortisone did not make it feel better - any creams or lotions just made it more itchy. Itchiness, pin-prick sensations, pink/red skin with defined borders, and nip receeding more were my main clues.

  • Sunflower182
    Sunflower182 Member Posts: 4

    So I saw my PCP again, and she referred me to a breast surgeon. Scripps has a MD Anderson cancer center that they referred me to and after doing extensive research- I read that it was one of the best in the country. The breast surgeon I was referred to had years of experience, but was also young enough to understand my concerns. She did a thorough breast exam, peeled off the scab (and it didn't bleed, ooze, or anything) and explained it's definitely not Pagets. She also had a nurse shadow her the whole time, so I expected her to be on point in case she was teaching her or something. I told her I'd like a biopsy to prove this and she explained she only does this under clinical suspicion and does not suspect this at all. She wouldn't budge. I told her I'm pregnant with twins and need to be around for them and she said "you have nothing to worry aboyt- do you know how many women are walking around with this issue?" and I said- unilaterally though? and she said "yes, this happens all the time"

    So I walked out of there feeling confident, but the next day I started worrying all over again, in case this was just a misdiagnoses and I'm walking around with Pagets. Being I was seen at the top cancer clinic in the country, and saw a very experienced breast surgeon, AND my symptoms have not gotten worse at all in the past year or so- I reassured myself, but the little voice came back of- "you never know until a biopsy".

    Am I going crazy? Or should I just the breast professional that looks at breast issues all day long?!

  • Sunflower182
    Sunflower182 Member Posts: 4

    so I went to the breast surgeon today and demanded a biopsy. I need to be shown it’s something else besides the worst, especially with twins on the way. She peeled off the scab 2 weeks ago, and it never grew back. Breast looks totally normal. So before she biopsied she said, “are you sure you want to do this?” Agh. So now I feel like Ike I was just going crazy. Praying for benign results

  • MBPooch
    MBPooch Member Posts: 40

    It can't do you any harm to have the biopsy done. Better to just know for peace of mind. Keep us posted!

  • Sunflower182
    Sunflower182 Member Posts: 4

    Just wanted to update my results- benign :)

    Turns out it was a fungal infection on the nipple (gross but so grateful no cancerous cells were found). I’m still glad I got the biopsy, and am grateful for your advice. Thanks

  • melissadallas
    melissadallas Member Posts: 929

    Good. It’s not gross. Warm damp breasts commonly grow “athletes foot” type stuff. Perfect environment for fungal stuff

  • Shorty51
    Shorty51 Member Posts: 1

    hi sunflower182

    I am diagnosed with pagets cancer on my right breast in November 2017. I notice my nipple was red ,rash and scabbing few years back but I did nt take it serious . First i thought it is just the rash or ecxima due i am sun bath outside too much. But as the years pass by the rash is spreading and take over my nipple. I have no sign of pain or fluid come out from the nipple. So I decide to go to see my family Dr and ask for some special cream in Oct 2017. She then sent me to see dermalogist. The dermatologist gave me cream and did the biopsy at the same time. Two weeks later I got the news that I have pagets cancel on my right breast.

    I had the mastectomy the right breast and went for chemo and hercepten. In Feb 13 2018.

    I heard paget cancer is very easy to miss diagnost by the Dr. I think you should go for second opion

  • jenacass
    jenacass Member Posts: 4

    Reading everyone's posts, I realize how fortunate I am to have doctors who took no shortcuts. In February 2021, I noticed what looked like ringworm on my right nipple when I got out of the shower. It was red, not highly noticeable, and only sometimes flaky. I waited a several weeks before calling my OB/Gyn because I was convinced my new bras and new detergent were the problem. Also, that nipple had been misshapen for years, so who knows if that was an early indicator or just a coincidence.

    You know your body. When I showed pre-surgery photos to friends who are physicians, they even found it difficult to see the discoloration on my nipple. Since my areolas are faint, my redness looked normal to others.

    When I called the OB/Gyn, she immediately referred me for a diagnostic mammogram, which moves you to the top of the scheduling queue. When the 3D mammo (Texas requires insurance companies to pay for them) showed nothing and the subsequent ultrasound showed nothing, the imaging center referred me back to my doctor with only a flippant mention of Pagets. Since I have family history, I called my OB/Gyn on my way home. Fortunately she was familiar with Pagets, and referred me to a breast surgeon. My amazing surgeon scheduled me within 10 days for both a nipple biopsy (sedated) and genetic testing. We were hoping for dermatitis, but ended up with confirmed Pagets.

    Be your best advocate. If you see something, say something. Early stage Pagets does not show up on the mammogram or the ultrasound. If doctors tell you its nothing, push for the biopsy or find a new doctor. Do not delay, because early diagnosis for Pagets is highly curable.