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Rare Cancer: Gynecologic Extramammary Paget's Disease
Gynecologic Cancers | Last Active: Oct 24 10:43am | Replies (76)Comment receiving replies
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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I'm just reading your post from May 6. I assume that is 2024? I'm wondering how your surgery went or did you opt for something else? What can you tell me about Aldara that you mentioned in your post.
Hope whatever method of treatment you chose that you are doing well.
To @nomikins
I'm also in the Bay Area and just saw someone at Stanford. I'm glad we have good doctors - and seem to be in good hands!
So I hoping you're doing well for your daughter. I'm 34 years old and it's almost the opposite for me since I was diagnosed with EMPD about 3 weeks ago and my mom also was recently diagnosed with breast cancer early this year and let's say it was pretty tough for my mom who's in her late 60s to know her daughter also has cancer. And it's been pretty rough since I still want kids and hope to doesn't affect that. But my mom is super tough which I'm sure you are too!
Have you started on Aldara / imiquimod cream? Any thoughts on how well it works / treatment/side effects?
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@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?