Has anyone had Paget's disease of the vulva?

Is it possible for you to see a gynecologic oncologist? Get a referral from your current gynecologist? My regular gynecologist did the initial biopsy. When it came back as Paget’s, he referred me.
There is no harm in seeking a second opinion.

Welcome, @lrcg. If getting a second opinion at Mayo Clinic is an option for you, here is the link to get started: http://mayocl.in/1mtmR63

How was your checkup? What did you learn?

Thank you I will follow up. My appointment went okay. No new Pagets yet.... But my questions were unanswerable because the UW doesn't seem to know anything. I asked about treatments or hospitals or such that are studying Pagets and the PA just looked at the ceiling I told her I feel so alone. She lost it and said "do you want a second option"? I said yes so now I am going to head to Swedish Hospital. Next will be Mayo.
I am also seeing an ND that is helping with general cancer treatments with supplement's and dietary things. It has been helpful and hopefully is why I haven't had a reoccurrence. It is better than waiting for it to come back.

It’s good you are getting that second opinion. I am glad you didn’t let someone intimidate you into believing their opinion is the only one.
Take care.

@lrcg I wish I had the PA you saw right in front of me so I could say - "Just tell me you what you know and don't know. And if you don't know the answers to my questions, who can you ask?". I can understand why you felt so alone in that appointment. It's great that you will get another opinion at Swedish Hospital.

We have to advocate for ourselves and that's just what you did. Medical appointments and some medical providers are so intimidating. You are seeking speciality care and I hope you find compassion and better communication at Swedish Hospital.

Do you know when your appointment at Swedish Hospital will be?

Thank you so much for the kind and encouraging words. Yes, so with Swedish Hospital when the scheduler called I let her know what had happened at UW and asked if any of her Docs knew more about Pagets than another. I also told her I wasnt in a huge hurry. That February or March would be great. Her reply was wonderful. She said that she would send out a message to the whole team to see who felt the most confident in seeing me. I was grateful to get such a nice person at the scheduling step of the process.

Hang in there. It gets better. Squamous Cell Carcinoma of vulva and labia DX in 1984 (after my 2nd pregnancy) was disregarded due to rarity. 3rd pregnancy had undeniable DX with new Dr Raymond Kaufman (Dean of Baylor Medical Center, Houston, TX) 1987 Partial vulvectomy with lymph node dissections on both sides..I came home in staples and stitches to care for newborn and 2 other small children with no support. I studied and learned on my own..it would take a book to document my journey to healing.
1: skirts and no underwear
2: multiple warm sitz baths with anti-bacterial soaps
3: keep dry with cool hair dryer
4: recline and elevate legs and pelvis as high as possible (legs over back of sofa, or lay on floor and put your feet up on sofa.
5: hot moist compress
6: massage and keep lymphatic fluids moving.
7: gentle stretching to avoid scar tissue adhesions.
8: topical lanocain and pure vitamin E oil for pain and healing
9: turn your bedroom into your office, and recline and sleep every chance you get. I had to work, so between naps, I did laundry, prepared nutritious lunches, and made lists of things I had to do.
10: demand help from family/friends unless they are streefull
11: avoid stress.:no noise, drama, extreme temps or exhaustion..
Happy thoughts, comedy shows, Kenny G
12: change diet to change body chemistry from acidic (sugar) to basic (grains..look it up)
13: iron: lots of oxygen to your brain.
14: Immune therapy, give a portion of your cancer biopsy to a lab that can grow it, kill it, re-inject it into your closest remaining lymph node..and teach your immune system to fight your specific cancer. Root for your immune system to win. Pray for yourself. Ask others to pray that they don’t have to raise your wild, independent children.
15: Interluken-2 injections directly into the lesions.
16: find a brave gynecologist close by who can biopsy at the first burn/itch/electrical feeling in the surgical area. They might see a recurrence, but the margins could be clear at earliest stage.
17: if you have irregular periods, get a hysterectomy so that you have enough blood to carry oxygen for healing and fighting. Take deep breaths to assist all of the above.
There was a theory that my husband was a carrier of a mutant Papilloma/Herpes virus which was causing the recurrence. I divorced him and never had another episode..could have been the stress. Years later I have tested positive for both viruses, and my Drs are shocked because they looked for those early on and all negative.
I was a lab rat, and survived to enjoy the results. Bless you, and good luck!

Please look for my reply to you..it may have appeared as a response to one of someone else’s reply to you..It’s further down. First time on here, but your situation is very familiar to me.

Attempted to reply directly to you, but please see my reply under @ameliae

@chaka67 please see my reply which mistakenly posted to either myself or @ameliae