Has anyone had Paget's disease of the vulva?

Such a practical and helpful post, @ima1survivor, not only for @chaka67 and @ameliae, but for all members current and future. Welcome!

Thanks. Yes - once diagnosed it was surgery on. Surgery off. It 'snot a big deal a few said.
It's because it's so rare, so many medical professionals don't know a lot about it. Ummm... yes it is big. Huge. Then a couple of really great women surgeons. Offered also horrendous radiation therapy - where it still comes back. So... as awful as the accident has been, it's helped me breathe into te future and not have to make such huge decisions yet. Yes - tested for other signs - colonoscopy, etc. Sigh. Take care. There should be some kind of study going on. and we should be part of it.

I was rushed to surgery. My Dr acted like she knew what was going on with Pagets but now I am shoved off to the PA that just doest know I would hold off on the surgery if given the choice again. There is the cream used for vaginal warts that has worked for some. That is what I would like to try next. You might ask about it.
Drs also have me tested for every other cancer. I know it can get in the lymph nodes but so far not for me yet.
Keep me updated. Take care

Thank you!
I found your reply.
I am processing all the information. I read a study where they thought that there might be a correlation with menopause. I was a couple of years into menopause when I noticed the first itch. Disregarded it as sweat etc.
I wondered about hormone therapy which I havent done.
Im going for a 2nd opinion in Washington Im not opposed to more opinions bc I dont want ti keep doing surgery.
Yes pray I am and will ask others.
The pagets seemed to stay put until I had the biopsy and surgery now it seems to be traveling.
I am seeing a naturopathic Dr that offers great support
Did you ever use the cream?
I so appreciate your thoughts thank you 🙏🏽

I was hit by a car backing up on October 12, breaking my humerus/shoulder. Gradually getting back .... put off seeing oncology/gyn because I couldn't move much... also had mammogram to do and had had other tests. Burning in one place continues --- was prescribed CBD oil at night (and now morning. Help with pain and relaxing for sleep. THC to use as much as needed (after urinating every time for sure). I haven't opted for surgery. Yet. I'm not sure I will. I'm 77. It is bearable. There are a couple of things I want to do before I head off this mortal coil. I wonder if they don't push for surgery too quickly sometimes. I've had it for at least 8 years without being diagnosed until last April. The expectation is it will come back, right? I don't think doctors here know a lot about it. A plastic surgeon to whom I was referred was very nice and in the end said perhaps I could have just the most painful (small) area excised.

@lrcg This is great news. I'm hoping you will get your appointment earlier. It's lovely that the scheduler you spoke with kind and helpful to you. Will you let me know when you are scheduled?

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

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

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.

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!