Paget's disease - anyone have any experience of this?

Just got diagnosed with Paget's disease of the nipple after having an ultrasound and biopsy done a few weeks ago.  Has anyone else had this?  No sign of any secondary tumours on the ultrasound though I will be going for a mammogram and ultrasound of the lymph nodes next week to investigate further.

  • Welcome to the Cancer Chat community Noodlequeen although I'm sorry to hear you've been diagnosed with paget's disease of the nipple.

    Hopefully some of our members who have contended with this diagnosis will share their stories and advice with you soon, but if you have any questions or concerns you'd like to discuss with one of our cancer nurses, they're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They're very knowledgeable and will do all they can to give you any further information you are seeking at this time.

    We're thinking of you Noodlequeen and wishing you all the best with your upcoming ultrasound and mammogram.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Hi there just wanted to make contact, I am newly diagnosed with Paget's disease...I  had my results of second opinion last Friday when it was confirmed. I'm now waiting for a MRI which is scheduled for 25th June can't be done before as I'm recovering from my last operation. I had my milk ducts removed and a punch biopsy, it came as a big shock because I wasn't presenting many symptoms! Just itchy, slightly red and discharge...but my consultant was as shocked as we were!  My next operation is booked in for 17th July... how much will be removed will depend on finding of MRI...It's all so scary. 

    Take care  

  • Hi Eddie - sorry to hear you're in the same boat!  Since my first post my lymph biopsies have thankfully come back clear, and no sign of anything else on the mammogram or ultrasound.  Earlier this week I had a wide local excision of the nipple so now have to wait a couple of weeks until I can hear whether they've found further cancer underneath the nipple.  This whole process seems to be nothing but waiting for test results which is understandable but also frustrating!  Trying to focus on healing and resting up for now.  

    I hardly had any symptoms either, just a raw patch of skin on the nipple, so I'm lucky my GP took it seriously and sent me straight off to the breast clinic.  From diagnosis to surgery was just 5 weeks so at least they're moving fast.  It would have been even quicker but I'm pregnant and they had to wait until I hit the second trimester to operate!  I hope you get the results you're hoping for from your MRI.

  • That is great news for you and it will all come back clear ...thank you for replying, what is amazing on our NHS and their quick response..I took was about the same timescale for my 1st operation. I wish you all the best on your recovery and the birth of your baby, that is so exciting and a positive focus for you. Take cake and keep InTouch, I will too. Xx

  • Hello,

    I've recently been diagnosed with Pagets disease of the nipple and I'm also pregnant. I've been looking for anyone that's going through/gone through the same. Hopefully all of your results came back OK? Can i ask how you found the surgery? 

    I've opted to go straight in for surgery as I can't have an MRI due to pregnancy, I also don't want to want until end of first trimester.

  • HI, I'm so sorry to hear that you've been diagnosed too. I didn't have an MRI either, just an ultrasound and biopsy to confirm the diagnosis. I had the surgery at 16 weeks pregnant just to be on the safe side. Is there a reason you don't want to wait until the end of the first trimester, has the surgeon actually agreed to that? Mine wouldn't do any earlier because of the risks to the baby from a general anaesthetic. The surgery itself was absolutely fine, in and out in a day and it didn't even hurt much afterwards (because it's mostly fat in the breast rather than muscle tissue etc). I had a full removal of the nipple. It healed up quite quickly, just had to wear a bra 24/7 for a few weeks (Bravissimo were v helpful with finding a post-surgery bra and you get the VAT refunded if it's for that purpose too). After surgery they said the margins were clear so I didn't need any further treatment, my baby is now one and I've breastfed off just the one side with no problems. Mammogram came back clear and although I haven't had an MRI check-up yet (because I'm still breastfeeding) it's scheduled for next year. Hopefully it'll come back clear.

    I hope everything goes OK for you, if you have any other questions about anything do message me.