← Return to Path to Vulvar Cancer (high grade squamous intraepithelial lesion)

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My experience was less than ideal. Had a "sore" spot on vulva. Was told I had lychen sclerosis and given a cream to use. 6 weeks later, sore was still there and a "mole" popped up. Went back and was told that it would need to be biopsied but no time available til next month. 30 days later biopsy done and was told I had squamous cell carcinoma. Was scheduled with a local gynecological oncologist. Again a wait. Her advice was that I needed to have a total radical vulvectomy with everything removed. She also advised I would no longer be able to work or care for myself and could expect to be in adult diapers and have lymphedema for the rest of my life and would need to keep my legs elevated. I was not happy with this diagnosis and then went to Moffit. What the gynecological oncologist there told me was even more horrifying. I walked out hysterical. A friend suggested I go to Mayo. Thank goodness for that. My doctor at Mayo was mystified. He told me he was not seeing what the other two physicians saw. He scheduled me for excision of the area and that was performed in March, 9 months later. Yes, that's how long it took to get pathology and records transmitted and be scheduled for surgery. It was a small amount of VIN3 tissue. The bulk was removed with the original biopsy. The "mole" was a malignant pigmented lesion. Ironically the prior two doctors said it was a mole and nothing to worry about.... The surgery was quick and not nearly the experience I was expecting. It was uncomfortable for a few weeks. Ice is definitely your friend. The best advice I can give anyone with a similar situation is to seek as many opinions as it takes to make you feel comfortable with your decision. A year later I now have an abnormal pap (my first). We will see where this takes me.

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Replies to "My experience was less than ideal. Had a "sore" spot on vulva. Was told I had..."

@komiskey10 reading this I just shook my head, after being diagnosed with squamous and meeting my oncologist for the first time he stated he has never seen this in a woman only homosexual men….good grief I should have run out the door!