← Return to Rare Cancer: Gynecologic Extramammary Paget's Disease
DiscussionRare Cancer: Gynecologic Extramammary Paget's Disease
Gynecologic Cancers | Last Active: Oct 24 10:43am | Replies (76)Comment receiving replies
Replies to "Hello Bijou, Can you please tell me what “surveillance” refers to? Does one have to go..."
Good morning, Naomi: By surveillance I meant: once a year I go to my OB/GYN for her to look at the vulva area; I would go twice a year if I could, but I think that is what I am allowed on my Medicare plan. She has spotted manifestations of EMPD every time. This is what I meant by visuals. Of course she uses a very strong light to observe. Then either she does the biopsies or has my oncologist perform them. Every time I have a biopsy, it is positive. Then, I start Imiquimod like same day or day after for about 8 weeks. After the treatment I go see my oncologist. Imiquimod treatment was suggested by another gynecologist skin specialist who knows both my Ob/GYN and my oncologist. I am being told EMPD is slow at developing but then I read a comment on this site from a lady who said, her EMPD was very aggressive and now the cancer has spread. I was told Imiquimod was originally used for other skin related treatments. I would not have known I had EMPD of the vulva if I did not go to my last Pap Smear at 65. Both my OB/GYN and my oncologist encourage me to tell all my friends and others to keep going once a year for the visual. My OB/GYN thinks that Papilloma virus might be causing EMPD but there is no supporting evidence yet. However, my oncologist says that she does not think so. In any event: I had Papilloma virus about 20 or 22 years ago and went through burning of the tissues affected around the cervix. My OB/GYN is guessing that then the doctor may have not gotten every cell affected by Papilloma Virus. Now children (boys and girls) are getting the vaccination.
@nomikins I can answer your questions. "Surveillance" in cancer care means that you are being carefully monitored for any new signs of cancer. You are scheduled for appointments according to your Cancer Survivorship Plan (I had endometrial cancer and so I go for appointments every 6 months for the next 2 years, then after that I will go annually). The "visual" I think refers to a physical exam. I have a physical exam (a pelvic exam) by my nurse practitioner as part of my surveillance. If she sees something suspicious then she removes the tissue (if possible) for a biopsy and sends it to pathology for a diagnosis. That is how my recurrence was found in 2021.
Your surgeon sent your biopsies to the lab to be examined by pathology. Have you heard back yet from your surgeon or seen your pathology report?
When you see your surgeon again she will tell you often you should return for those "active surveillance" appointments so that either she can examine you (the visual) for any changes that she will biopsy and perhaps treat again. If she does not tell you how often you should return then please ask her.
Does this answer your questions?