Paget’s disease

hi,

Is there anyone with Paget’s disease and know of any support groups 

clare 

  • Hi ClareB43 I hear you and no you are not alone, there are a very select group of a few of us. When were you diagnosed and have you had any treatment yet?

  • FormerMember
    FormerMember

    Hi

    Diagnosed yesterday - biopsy was positive (after negative mammogram and ultrasound).  Surgeon has said a central excision is required - and they will check other tissue they take at the time.  After getting home and research, I am wondering why they don't do an MRI so they have more of a definitive on whether there is any underlying cancer, as mammogram and ultrasounds do not always show apparently.  Saves them finding more after the op and having top operate again. Ouch!

    What stage are you at?  Hope you are OK.

    This is all a bit of a fright. 

    Booked in for op in 3 weeks.

    Thanks for listening.

    Eliza

  • FormerMember
    FormerMember in reply to FormerMember

    oops, realised this is wrong section, I am breast Pagets, will redirect!

    Good luck with yours.

  • I would suggest that you push for an MRI really important. You are totally right to insist on this make sure that they listen you need to be thoroughly checked. Best wishes 

  • It's me with paget vulva disease. Please write me inbox.My English is not good.... 

  • Hi ClareB43.I have Paget s disease 

    Hi Clare !!! I was diagnosed whith Paget's disease from 2009 !!! I want to help you!!! Send me inbox !!! 
     
  • hello i was just diagnosed last week with cancer of the vulva : Pagets     Preety decimated by it - surgery scheduled for next thursday - partial excision of tumor on right labia - and a 1/2 inch around it.....has anyone else had this surgery ?  I got an early Stage 1 breast cancer diagnosis mid dec 2021 - just finished surgery and radiation for that. My research has shown me that pagets frequently presents with other cancer - specifically breast cancer  - so plz take precautions in that area. I have also seen a ? link in research about HPV and Pagets...finding support for this diagnosis is tough! Liz 

  • Hi Liz

    I have extra mammary Paget’s disease of the vulva - was diagnosed 18 months ago. You can see my story in my profile. I am clear of it at the moment having been treated with imiquimod/Aldara. Although I am very aware that it can recur. I am getting regular scans too to check for any other cancers. There are a couple of private Facebook groups which are very supportive and the EMPD website site is very helpful and informative for research. Hoping you are doing ok now. 

    Tricia x

  • Hello Tricia - thanks for reaching out. I read your very thorough profile with interest. I also am on immiquimod cream. I said no to the surgery (particularly with a 60% recurrence rate ..) and went for a second opinion to MD Anderson. Dr Michaela Onstad Grinsfelder is a Paget specialist in the oncology department there and is DIVINE! She sees 3-5 Paget's patients a week and is a firm believer in immiquimod based on observation and experience. She said that surgery is what physicians are taught when they deal with EMPD and many other cancers ...it is not necessarily wrong.. but in most women's cases unnecessary. I was diagnosed mid March and return to MD Anderson July 15 for a re-appraisal ...fingers crossed the "cream from hell" has worked it's magic ! my email is sibley1@me.com if you wouldn't mid sharing the private groups ? ill check out the EMPD website now ....so glad your paget's is under control !

    All the best  Liz