Newly diagnosed - Paget's Disease

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I have just been diagnosed with Paget's disease via the biopsy of the nipple. My ultra sound and mammogram were clear. I'm really unsure what to expect now and have no real grasp as to how this will effect my life in both the short term and long term. In my head I think that I'll just have a quick surgery and all will return back to normal. Is this realistic??

I have pre op booked for Monday and surgery due 13th Nov.

I'm also due to fly to Greece on 24th Nov to visit my parents family. I know I'll have to cancel this trip but does anyone know when am I likely to be am to fly safely?

  • Hi  and a very warm welcome to the Macmillan Community but sorry to hear about your diagnoses.

    Navigating this journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' journey can help a lot.

    The Community is divided into dedicated Cancer Specific Support Groups (Discussion Rooms). I had a site search and found a number of references to your Paget's disease in our Breast Cancer group so can I recommend you join and post in our dedicated Breast cancer support group. This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

    To connect in with the group click on this link> Breast cancer then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)

    When you are ready you can introduce yourself by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.

    The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

    We also have our Ask an Expert section but do allow a few working days for a reply.

    Do get back to me if you need further help navigating the community.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi mjthyer,

    Sorry to hear your news. I think we're on same bus! All my tests were clear except for nipple biopsy but my doc didn't give it a name. Had my pre-op last Friday and have surgery on Nov 10th. 

    If my lymph nodes are clear I was told I'd probably have hormone therapy. The op will be as an outpatient and was told a couple of weeks to heal. I'm not sure about flying, your cancer nurse will know. 

    Good luck, I'll be thinking of you on the 13th. 


  • It all very fast and not real.... In my head I'm just going to have a little operation and then it'll all be back to normal!!

    Good luck on the 10th xx

  • I know, it's surreal.  If it helps, my doc thinks it is just a little op and all fine so we'll go with that. Xx

  • Hiya!

    Hope you're well?

    Had my op this morning. Back home, still sleepy! It was really straightforward and I'm not as sore as I thought I would be, just feel a little 'raw' but not so much that I will be taking any painkillers. I've already been booked in for follow up in 2 weeks or so with the consultant. Please don't worry about your op, if it's anything like mine you'll sail through. 

    I'll keep my fingers crossed for you on 13th,


  • Hi, I'm really glad it went well. Hopefully you'll be back on your feet in no time. I'm a bit apprehensive but I think I'll be fine. I just want it over and done with now. Thank you for messageing back. Let me know how you are getting on.

    Speedy recovery!

  • All done. Feel better than I thought I would

  • Brilliant! Hopefully that's the worst over.

    Remember to take it easy and help your body heal. Time to spoil yourself. I'll let you know how I get on. 

    Take care

  • Hi!


    Had my appointment with the clinical lead yesterday. Unfortunately, my biopsy results weren't available, so I have to wait a bit longer.


    My scar is nothing like I'd imagined and I don't think it will be very noticeable when it's fully healed. They've said they can tattoo me later if I want.


    Still no real pain, hopefully my good luck will continue. How are you doing?



  • Hi,

    Glad you are doing well. I am pleasantly surprised at how well I feel. No real pain either. I had a small seroma under my armpit which was uncomfortable until it decided to drain itself!

    Fingers cross for good biopsy results my results appointment is 28th Nov so should know soon what's next