Has anyone had Paget's disease of the vulva?

@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?

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.

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 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

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.

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

Forgot: I also tried Accutane (Isotretinoin).. IT HELPED A LOT. It works from the inside out, and clinical trials showed that even moles and red (pre-cancerous) disappeared..with no explanation of how it worked. I spoke to the lab in 1994, and manufacturer sent discounted samples to my gynecologist to hand to me. I think the almost toxic levels of vitamin A disrupt defective cell reproduction, or the little biosphere it sets up for itself. There may be some similarities in female labia tissue and oral pallet tissue development from what I’ve deduced, but no studies yet. Squamous cell layer is suspected origin of my vulvar cancer, and Accutane may just dry that layer. I could only take it for a few months at a time. There was no chance of pregnancy, so no concern for the horrific birth defects it causes in the fetal pallet. It was gifted to me due to cost, no off label use at that time, and the curiosity of the clinicians who’d conducted the trials.

Could you please share my suggestions with whomever needs it? Mine was a 15 year journey with no direction. I did my own research and was a willing lab-rat to those researchers I could convince to give it a try. A lot of fearless people (who trusted me not to sue them) brought me back from the brink. The numerous surgeries caused forgetfulness, so I functioned by sticky-notes, calendars, and to-do lists. Only a few close friends knew my DX and how bad it was…I did not want my small children to worry. Since I functioned best in the state of denial, these tidbits of information are resurfacing in random order. I’d really appreciate your help to post my contributions to any/all support threads for gynecological cancer .

Would you be willing to share your Dr and Cancer Center with us? It seems a dream to find a specialist. Our journey continues. I am grateful for each day and for this group.

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.