Rare Cancer: Gynecologic Extramammary Paget's Disease

I'm so sorry 💔 I have prepared for my death, saw "the light" ow fo

I can’t tell you how sorry I am to read this. Your whole journey with EMPD just takes my breath away, and now to read that it’s a fast moving train. I hope the radiation treatments on your spine help. Please know I’m rooting for you.

How are you doing?

@moffitt, I echo @pugpeople's simple yet complex question: How are you doing?

Yes!!! However, so far not invasive. About to have surgery #6. Very debilitating & frustrating. Good luck to you & good to hear from you.

I am just now reading these entries & I can't tell you how much I appreciate hearing from real people about this disease. At the same time I am truly sorry to hear about the difficult journey you both have been on.
I know I was lucky to have had an astute OB/GYN who saw a small "rough patch" which really didn't bother me & decided to do a biopsy. I believe he was as surprised as I to learn about Paget's. It was clearly early in the game, which I believe has helped my progress. I am a retired librarian, so I research everything, & I quickly learned what I would be facing. I searched far for an oncologist with some experience with Paget's, and I refused a radical vulvectomy because it is not a guarantee that Paget's will not return. After a first surgery with one male doctor, who did a "simple" vulvectomy, I found a wonderful woman at Emory in Atlanta who sees me about every three months, & so far with 4 more surgeries, my life has remained "normal" after each recovery. Fingers crossed that my good luck (if having Paget's is good luck?!), continues. Thank you for sharing your stories.

Are we into private messages here? Or have I still not figured it out? If not, chaka67, could you pm me?

I was diagnosed with EMPD Dec.. 18, and I was immediately sent to a gynecologist/oncologist. I met him, and prepared for a partial vulvectomy. I had NEVER heard of this disease before. Fortunately for me, I found myempd.com. I learned so much! The week before my surgery was scheduled, I contacted a dermatologist (The director of Moh’s surgery) at VCU Health in Richmond, VA. He emailed me back, and I cancelled the vulvectomy. I went to see him,and the first thing he did was scouting biopsies to see where and if the EMPD was going. All the biopsies were negative except for the original. Since I had had my preventive maintenance tests (pap, colonoscopy mammography), he sent me for a CT with contrast dye on my chest, abdomen, & pelvis to make sure there were no underlying malignancies. Everything was negative which meant my EMPD was primary. I went through 4 rounds of Moh’s surgery and had all clear margins. My Dr told me with all that, I had a 5% chance that it would come back. I say that means 95% chance it won’t! He declared me cancer free Feb. 13. If I had not found the myEmpd.com site, I would have had the partial vulvectomy with guesses at the margins (and where mine was heading, the vulvectomy would not have gotten it). This means I would have been right back for another surgery. Visit the myempd.com site and join the secret facebook group if you can. The 400+ members share their experiences with this scourge that is so much more helpful than any other place.
God bless you all in this journey!

Thanks for the reference to myEmpd.com. I've read everything I found on googlescholar. I was diagnosed in Sept 23, had surgery Oct (one lymph node involved), did radiation with chemo (cisplatin) Dec-Jan 24. Having PET/CT tomorrow. One oncologist is suggesting additional chemo and one is suggesting immunotherapy. Surgeon said no to more chemo. First radiologist said yes to chemo. Second radiologist says no evidence more chemo will help and if i do anything, it should be immunotherapy. Docs are from excellent hospitals - Cedars Sinai and UCLA - just too little research. Anyone doing immunotherapy?

Hi @worried123, that is so confusing when you get differing opinions from experts. I'm tagging @victoria15 @ameliae @chaka67 @pugpeople @catlazz @blueeyedkygirl50 @moffitt to make sure they saw your post and can share the treatments they had.

Worried123, have you decided to go ahead with chemo or immunotherapy? If yes, what regimen are you getting? How are you doing?