Has anyone had Paget's disease of the vulva?

I have not commented lately because I felt that I had offered all that I could about my Paget's journey, but my heart goes out to you with your bravery with dealing with this horrible disease with young children.
My only new offering at this time is that my Dr. is Namita Khanna at Emory in Atlanta. Her only offering has been surgery, but my research suggests that is the best bet for Paget's at this time. I called Mayo & discussed my situation with the kind person who answered & she agreed that Mayo had nothing more to offer, but of course I was welcome to come. Early on I went to 2 other gynecological oncologists with no other ideas. Dr. Khanna is professional & empathetic & most importantly, a good listener. I have had 6 surgeries with no invasions into lymph nodes so far. I go every 3 months. I would NOT go to a PA for this disease.
Last note: Emory is a teaching hospital & I see, in addition to Dr. Khanna, nurses, medical students, residents, those seeking fellowships, etc with each visit. Dr. Khanna & I agree that over the last 10 years I have helped to educate at least 100 medical personnel about Paget's.

Hormones: My lesions reappeared during each of my 3 pregnancies. 1st pregnancy: immediately after delivery, and was clearing up at first follow up.
2nd pregnancy: lesions returned immediately after delivery, biopsies at first follow-up. Results dismissed as ‘too rare’ and ‘a mistake at the lab’. 3rd pregnancy: lesions appeared within first 3 months..differences were that I was working long hours, drinking a lot of milk at work, gained twice as much weight, and was wearing lycra pantyhose and sitting in a cigarette smoke-filled office. Incredible stress at work and home were probably contributing factors. My beloved gynecologist/obstetrician confessed that this was obviously out of his realm of expertise and got me into see Dr Raymond Kaufman, Dean of Baylor Medical School. He was old-school sharpened bamboo, shave off thin layers from his wheel-chair wonderful. He warned me that continuing the pregnancy was dangerous for me, but that the baby would be unaffected if I survived to full term. Worst lesions ever, excruciating pain. Deep biopsies performed on delivery table immediately after birth of my son. Spinal block lasted 2 days, returned home to recover and prepare to be gone to Houston for 2 to 3 weeks. An angel for our church cared for my family. Dr. Kaufman did the surgery at Texas Children’s Hospital..making it impossible for me to feel sorry for myself while babies were braving bigger battles. I was out in 11 days instead of 21. The aftercare at home was intense, and I busted a staple while lifting my baby, but it was all survivable. We lived 3 hours from Houston, so I had to just ‘figure it out’. At age 32, they gave me a topical testosterone oil to apply directly to the surgical area..just to try it. Their theory was that if this cancer was triggered by hormones, it might subside with a higher testosterone level. I developed anger issues, so I stopped using it. They told me that I was in early menopause, and were hoping that my cancer would be less aggressive and more manageable. Symptoms were in steady decline after 1987 birth of last baby and tubal ligation at age 31, and at age 39 I had a hysterectomy in 1995. At age 46, I had a final major surgery, but left Tulane hospital in New Orleans after 3 days. Prayers work. I’ve been OK since.

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

Thank you so very much for sharing. I know it isn’t easy to talk with complete strangers about this disease. I feel very blessed to be in an area with a top notch Cancer center and to have a doctor who is a specialist. My Pagets is invasive and I was onboard with the surgeon to remove all that was present, including sentinel lymph nodes in both sides of my groin. The surgery is not easy, but he was able to get clear margins with no skin grafts.
I have a post op appointment tomorrow (I might be able to have the drains removed!).
I do have someone to help me at home; preparing meals, cleaning, so that is a huge help to me. I commend you for being able to take care of yourself alone. I know that is tough.
Thank you again for your input! I hope you can find some relief from the pain soon.

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

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

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!

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

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.