November 2020 my dentist saw something of concern on my cheek and said I should get it looked at.
I have no insurance and rely on the VA for medical needs.

Called VA and got an appointment with my primary care MD in January. She referred me to the ENT CLINIC where I had a cup biopsy in March. Covid happened and could not return until June because the hospital was basically closed down. Biopsy was inconclusive but rule out SCC and there was a reccomendation for an excisional biopsy . ENT ignored that even after i pointed it out to him and sent me to Dermatology closest appt was October.
I went back to my primary care md and told her the path lab recommendation and she too just said wait til Dermatology looked at it.

It was a team from Tulane University as the hospital did not have a MD on staff. They said was not a dermatology issue but recommended complete excision . Finally I was sent to a civilian DDS on Dec 23 who said it was too large for him to cut out but did a large biopsy.


The origional lesion was about 1 cm in diameter and thin. By this time it was 2cm by 3 cm and feels warty and about 1/8 inch thick.
The civilian md sent the tissue to the Tulane University path lab.
Result Jan 13 2021: was Verrucous carcinoma and noted the possibility of transition to invasive squamous cell carcinoma cannot be ruled out based on the sections examined. Complete excision of remaining lesional tissue is suggested.

I then found out the VA doesn't accept outside biopsy results. It took until Feb 7 to get the slides to the VA and they aggreed with diagnoses. Then I was told I would have to wait for a consult from the joint pathology center for oral pathology before any decision on treatment / surgery .

Still waiting.

Hi Russell, sorry to hear you have to jump through so many hoops. How frustrating. I don't have any advice for your situation, I just wanted to say we are here and cheering for you! Keep us updated and I hope you are able to get some answers/a treatment plan soon.

Take care, Martha

Found out that my treatment was held up because the original ENT did not think it was cancer and did not think the biopsy report was correct. He was probably saving professional face as his last note was a fungal infection and he was dropping me as a patient one month before biopsy showed Verrucous Carcinoma. I had to go around him to the head of pathology and finally have surgery sheduled March 22. By this time it covers 75% of my inner right cheek.. If I was not aggressive in getting treatment I would still be waiting as the national joint pathology lab is backed up and still has not sent a report.

I’m pretty new to this myself, but wanted to post once I read your experience, RussellSR. So very sorry to read about all of the shuffling around and delay in treatment. How hard!

I have insurance, but it seems like the ENT runs everything and has been wrong sometimes and gives me fast, sometimes conflicting info. My group won’t pay for a second opinion out of network.

It sometimes feels like all the calls and self-advocacy is more challenging than the cancer! I know that in the US, there’s lots of free services thru cancersupportcommunity.org. Hang in there. I hope you get in with the docs asap