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Joined: Jun 2021
Posts: 1
Cwcase Offline OP
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Joined: Jun 2021
Posts: 1
Hi

I’m worried about my scenario and was wondering if anyone else is familiar with or been through something like this.

In January 2020 I had a 2x4 mm lesion removed from my upper right gums and biopsy. It came back with hyperkeratotic squamous epithelium exhibiting areas of verrucous hyperplasia, negative for epithelial dysplasia. The dr told me he wasn’t concerned at all because it was negative for dysplasia so nothing to worry about. The lesion had been there for six months prior to removal.

In April of 2021 I noticed another similar lesion but it was smaller and on the upper left side of my gums instead of the right side like before. I had a new oral surgeon this time due to moves and he reviewed my records and said he was not concerned but would remove it anyway to double check.

This time it was a 1.5mm diameter lesion so much smaller. It came back with the exact same pathological report. Hyperkertotic squamous epithelium exhibiting areas of verrucous hyperplasia and negative for epithelial dysplasia. Again the Dr is not concerned.

So I’m scared since this is a duplicate of the same legion but in a totally separate place! I’m most concerned about this being early stages of proliferative verrucous leukoplakia. I know it’s rare but it seems to fit some of the criteria based upon some medical journals.

I’m not overly worried about verrucous carcinoma because both of these lesions were biopsied.

I would love to hear any input from anyone who has been through something similar or input if I should be worried or not.

Thank you

Joined: May 2021
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Hi! I can absolutely commiserate. I have leukoplakia lesions on the roof of my mouth, and on my upper and lower gingiva. I have been watching it progressively spread for the last two-three years, but so far since my biopsies have been negative for squamous cell carcinoma or dysplasia, my doctor just wants to stay in "wait and see" mode. Based on my research, my lesions are definitely PVL and I would prefer to take a more aggressive route, but have yet to find a doctor who agrees. I think doctors see PVL so rarely that they aren't as familiar with it as they are with lichen planus, lichenoid reactions, etc. Good luck and continue to advocate for yourself!

Last edited by ChristineB; 06-17-2021 05:14 AM. Reason: removed link to outside unmonitored/unregulated site

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