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My Story | Sam C., Texas, USA

VIN III (vulvar intraepithelial neoplasia or carcinoma in situ), diagnosed 1996 at 31
Skinning vulvectomy

Hi. My name is Sam and I am 37 years old. I have been happily married for almost 16 years and have two wonderful children: Mike, 14 and Samantha, 10.

During my first pregnancy in 1987, my ob/gyn noticed a small lesion on my vulva and sent me to a specialist for biopsies (the first of many.) The results came back as Bowen's Disease. At the time, I was told this was very rare, caused by HPV (human papilloma virus), and very uncommon in a 22-year-old. After the delivery of my son, I was scheduled for surgical excision of the lesions. The pain of the laser surgery made labor and delivery seem like a cakewalk. If I had to describe it, I would say it felt like cigarettes had been extinquished directly onto my skin. I went in for my check ups and Pap smears every six months, and for nine years, I was symptom-free.

In 1996, my husband and I decided that I would go in for a tubal ligation. I went to my ob/gyn for a routine pre-operative exam and he discovered three small, grey lesions on my vulva. We decided to go ahead with the tubal ligation - he would surgically remove the lesions while I was under the anesthesia and send them to the lab for biopsies. Even before the results came back from the lab, I was back in his office showing him four new lesions. The lab results showed severe VIN III with margin involvement. When you hear that (as a patient) you think, "Okay. VIN III. What the heck is that?" Then, when you hear the word, "cancer," it's as if your world stops turning. I can remember agreeing to see an oncologist and leaving; I remember calling my husband and parents in total hysterics; I remember thinking, "I'm going to die. I have two children!"

Logic does return eventually and research begins. The oncologist confirmed the VIN III and I was given options of chemotherapy, radiation, or a surgical procedure called a "skinning vulvectomy". He presented these options in such a way so as to make the skinning vulvectomy seem like the only answer. So, of course, I immediately agreed to it.

I survived the surgery and have only had one small recurrence since which was treated with LEEP (Loop electrosurgical excision procedure.) The point I am trying to make, however, is this: Please, please, please, please do the research on your doctor and your treatment options. Get second opinions. I have a ton of scar tissue and deformation because my oncologist had only done a skinning vulvectomy once. I went through months of debridement sessions trying to get the surgical site to heal.

I have recently found out through my new doctor, after giving him my history and access to my biopsy reports, that this surgery was too extensive for treatment of my lesions. He would have never recommended a vulvectomy for someone my age unless it was the only option left. It could have been easily treated with a topical chemo and local surgical excision. It's a very tough thing to deal with a skinning vulvectomy, even if it's done well by someone who knows what he is doing.

I am cancer-free, however, so for that I'm grateful. God bless anyone else having to go through this.

May 2005

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