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Rare Cancer: Gynecologic Extramammary Paget's Disease
Extra Mammary Paget’s Disease - invasive cancer.
No know treatment or clinical trials.
Very rare and rarely studied.
Anyone else have it?
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Thank you. This is helpful. Although scary. Does it look like you are able to keep things in check with the cream? No one is pushing for surgery?
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?
Yes. I took photos a while back with my cell phone. But it doesn't mean anything to me. How to know what is Paget's and what isn't.
Thanks. RM
Hello Bijou,
Can you please tell me what “surveillance” refers to? Does one have to go through repeated biopsies once one has had surgery or other remedies (Aldara)? Any advice you can give would be much appreciated. What does your “visual” refer to? Oy! So many new terms!
Thanks,
Naomi
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1 ReactionI meant: Not sure if you have viewed my comments.
Not sure if I have viewed my comments. I also stated a few things about my EMPD of the vulva on my profile page. Invasive word is scaring me.... Best regards...
@nomikins This is all sounds very promising. When did you have the Mohs surgery? How are you feeling today?
Just by way of an update, on my visit to the Mohs surgeon, things went well, I guess. What went well is that she answered my questions and those she didn’t know how to answer (I asked about some non surgical treatments), she vowed to research. What also happened is that she decided to do more scouting biopsies, which is never fun. But at least this time we were able to minimize the pain from the anesthesia shots.
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2 ReactionsAw thank you@naturegirl. I appreciate your advice and your concern. Yes, I already have let my daughter know about my worries. I can’t really hide these things very well anyway. I will let you know how things go on Friday. Many thanks again! For your interest and concern!
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