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Rare Cancer: Gynecologic Extramammary Paget's Disease

Gynecologic Cancers | Last Active: 1 day ago | Replies (49)
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@nomikins

Sorry, Colleen, just seeing this now. Still learning how to navigate this platform. Thank you for your welcome and questions. Yes, that’s the trial I was referring to, but coming out to the Mayo Clinic right now is not an option.
Right now I am looking at doing Mohs surgery where I live. I am in the Bay Area and the team consists of Stanford doctors. I’m seeing a GYN and a Derm. The Derm is a specialist in Mohs surgery and the GYN appears to be very familiar with EMPD. So I feel I’m in good hands. But, I am hoping to find info. on less invasive treatments, like Aldara. They will review my options with me this Fri but I already know they believe the Mohs surgery is the best option for me. I’ve haven’t had surgery since I was much younger, so this is a big deal for me and I’m pretty freaked out. But keeping it together for the sake of my daughter.

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Helen, Volunteer Mentor | @naturegirl5 | May 7 8:00am

@nomikins Since you are in the San Francisco Bay Area you do have many options for treatment. You write with confidence about your Stanford team. Since the dermatologist specializes in MOHS surgery and your gynecologist is familiar with your diagnosis then I'm thinking you can have confidence in the plans. In my experience having that confidence in my team, as I did when I had surgery in 2019 at Mayo Clinic for endometrial cancer helped me to cope so much better. I kept telling myself how grateful I was that I was going to a Comprehensive Cancer Center with an excellent reputation for my treatment. As are you.

Staying calm in front of your daughter is good but I expect your daughter knows how you feel. If she already knows about the EMPD diagnosis why not let her know you are stressed about possible surgery? I'm suggesting this only because I grew up a long time ago (I'm 72 years old) in a loving home but learned from them to try and hide my emotions. I learned over time that if I can say how I feel out loud and it lets the stress out and then I can cope better. Or maybe you are already doing that?

Will you please come back and let me know what happens at your appointment on Friday?

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