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Has anyone had Paget's disease of the vulva?

Gynecologic Cancers | Last Active: Sep 27 8:18am | Replies (142)

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@ima1survivor

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.

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Replies to "Hormones: My lesions reappeared during each of my 3 pregnancies. 1st pregnancy: immediately after delivery, and..."

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.