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?
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!
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
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
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.
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 ! ill check out the EMPD website now ....so glad your paget's is under control !
Thank you for your information. I had surgery for Paget’s in September and it has already reoccurred. Any additional information or suggestions would be appreciated. I am trying to get an appointment with Dr Grinfelder. Again, thank you.
