Paget's Disease Query

  • 3 replies
  • 2 subscribers


I'm looking for some advice regarding the symptoms of Paget's Disease. 

Just to the set the scene - last year age 35  I was diagnosed with stage 3 bowel cancer, had bowel resection and 6 months chemo and am currently in remission. 

I currently have the classic issues on one nipple/areola for Paget's, however, I also have very severe itching all over my body. I've caused a pimply rash through itching and it's on my back, legs, scalp. We've noticed that my hair has been thinning over the last month or so. 

I'm currently on holiday over 100 miles away from home, so unable to be seen by my GP (they sent an urgent breast clinic referral last week and prescribed antihistamines). The antihistamines have had no effect whatsoever and its been getting worse, so today I attended the Urgent Admissions Unit near to where we are staying. They were brilliant, however they did mention Paget's Disease as a possibility.

I just wondered if anyone had experienced anything similar, etc.

Any advice, thoughts, etc would be greatly appreciated.

Huge thanks in advance xx

  • Morning 

    Sorry to see you joining us here with your Pagets worries :-/

    Antihistamines for the rash, eczema cream and maybe antibiotics are the usual meds that are handed out at first when querying pagets and when they don't seem to work you usually get referred to a breast clinic - so things are moving in the right direction.

    There are few ladies who have had Pagets but you will probably need to join the Main Breast Group here to get in contact with them as Inflammatory breast cancer is a different type.  Pagets can have links with DCIS an early form of breast cancer and unfortunately some ladies with pagets are also found to have dcis.

    You can check out the extensive Macmillan Paget Information area clicking the link.

    Do you know when your breast clinic appt is for ? Fingers crossed you won't have to wait too long and get good results.

    Enjoy the rest of your holiday, fretting about the 'what if's' won't change anything.

    Take care, G n' J

  • FormerMember
    FormerMember in reply to Dreamthief

    Hi Dreamthief, many thanks for your reply and the info.

    I'm at the breast clinic on Tuesday afternoon so will hopefully get some answers.

    Thank you again for the info - I shall pop over to the main breast page now. 

    Take care

    Kate xx

  • Morning Kate  / 

    We will keep our fingers crossed for Tuesday - Do let us know how you get on either here or in the Main Breast group.

    If you need some emotional support while you wait any results the lovely ladies in the breast group will help you more than you could imagine as they have all been where you are now.

    Hugs, G n' J