Hi All,
This is my first post on any forum so please let me know if I get out of line! I found the OCF site this past Friday when I found a suspicious oral growth. This morning a VELscope created lots of excitement in my dentist's office...I ended up providing the education for the day as all staff members came in to check out what the dark spots looked like and to take pictures from many angles.
My dentist referred me to an Oral Surgeon, that receptionist questioned why I wasn't referred to an ENT...said the OS don't usually do biopsies, but scheduled a consultation and told me what it would cost.
My question: should I make an appt with an ENT and skip the OS?
Thanks in advance for any help!

Hi and welcome

i am not sure about in the US,but in the UK ent dont deal with oral cancer.Its either a head and neck specialist or max fax (maxillo facial).So i may be right or i may be wrong lol but i would go for the oral surgeon.I bet a hundred people will come along and tell you to go to a specialist cancer centre which you have in the states so maybe thats a third option.

liz

Thanks, Liz. I'm searching for a specialty center right now;)

I am not so sure that the receptionist gave you good advice. I believe that most OS would give you a biopsy if it's warranted. Remember that some of the screening tests will light up a pizza burn so it's too early to freak out. How come they didn't give you a brush biopsy at the dentists office? Having a positive Velscope is not conclusive of anything except that you need a more expert look see.

If it's anything alarming you will end up at an ENT anyway so why not just skip the OS (and save a little cash) and get a referal to an ENT, preferably one with OC experience. It'll probably be close to the same price. If there is a cancer center or CCC in your area that would be the preferred approach. OC is relatively rare in the scheme of things and an expert opinion is necessary. Many of us were misdaignosed in the early phases. My dentist, who missed my Dx, told me that in 25 years they have only seen 3 OC cases.

I commend your dentist in investing in the equipment!

I was in a study and the 1st thing they did every visit was the brush biopsy.

This was at ohio State James Comp. Cancer Center.

My ENT did my biopsy (a FNA) the first time I saw him but I'm sure a lot depends on where the growth is.

My husband's initial biopsy of a very small piece of a leukoplakia on his tongue was done by an oral surgeon. The pathology report indicated moderate dysplasia (not cancer, but not normal), but strongly warned of a "skip effect," meaning that there could be cancer cells in areas that were not part of that biopsy. (The lab that read the slides did only oral pathology, and my guess is that the pathologist saw something suspicious but not definitive.)

He was referred to a local ENT for an excisional biopsy, which removed the whole leukoplakia, and that's when the biopsy report came back with SCC in situ. Once we knew for sure there was cancer, he began being seen by an ENT cancer specialist at Hopkins, about an hour away. No further treatment so far, knock on wood.

His dentist does VELscope him every six months.

Welcome to OCF. Ive had my oral surgeon do two of my biopsies and the thrid one was done by me ENT. The ENT referred me to the oral surgeon.

Hi and welcome with sadness.

I went to my dentist for cleaning and showed him the small spot under my tongue. He made an appointment for that afternoon with an OS who did an excisional biopsy of the tumor. I then looked for a nearby CCC (the closest-40 miles away) and it took three weeks to get an appointment with an ENT. It seems that at this CCC they have one doctor that handles OC cases.

After waiting for the appointment, that ENT said "watchful waiting" was my choice. He did not want to do surgery for clear margins after I had already had a biopsy done with the OS (I felt like he considered that janitorial work; cleaning up after someone else). I wish I had shopped around at other CCCs further away and gotten a quicker appointment, and I wish I had skipped the OS.

I finally made an appointment with an ENT at Johns Hopkins (130 miles away) for a second opinion. He has clinic hours on Wed. and Thurs. and I saw him the first clinic day after I had called him. Unfortunately, that was three months after I saw the OS, so he agreed with the first ENT that "watchful waiting" was appropriate at this point due to the delay.

I asked the Hopkins ENT what he would have done if it were he who had done the original biopsy, or had seen me soon after the biopsy. He said he would have immediately scheduled a surgery that would include frozen sections being taken during the surgery and tissue removal in the area of the original tumor until clear (1cm diameter at least) margins were obtained. He would have also made permanent slides to be examined later to make sure they did not miss anything.

If I had know then what I know now about recurrence (often a result of cells missed from the first primary, not an unrelated new second primary), I would have contacted the Hopkins ENT immediately after Dx in 09/2008 and made an appointment which would have occurred within days. Once you are a patient of this ENT, your care is his responsibility and things move quickly.

My first ENT did say at my last appointment (June 8) that my tumor was very close to an SCC in situ. I think he feels safe to say that now that it has been 9 months since the excisional biopsy.

I am now in a "treatment" situation similar to Leslie's husband.

My advice (with my limited knowledge) would be to investigate CCCs in your area and get an appointment with an ENT ASAP. I agree with Gary, skip the OS. I asked my Hopkins ENT about the Velscope, and he said he had little faith in it and did not recommend it as a part of my surveillance (readings depend on the skill of the operator, and he felt there are too many false positives).

I wish you the best and hope your "suspicious oral growth" is not cancer! Please let everyone know what you find out.

P.S. I want to "justb" too!