Hi Everyone,

I am having issues like everyone else. I went to my dentist who found leukoplakia - sent me to the oral surgeon who did a biopsy and found I had two places with it - and one place was ok, but the other place had mild dysplasia. The oral surgeon "was" going to remove these two areas upon my request, but when he saw how nervous I was about cancer and my big list of questions, he decided it was better that I go on straight to the ENT (where he was sending me next to be observed anyway).

So onto the ENT and two appointments with him. He is NOT going to remove this mild dysplasia - much to my dismay. He tells me it is procedure to do no harm (the area is very small about half the size of a pencil eraser) and he is going to watch it. I am to come in every 3 months to be watched. He will only remove if it gets to severe dysplasia. He says removing it will be a difficult surgery for me and expose bone for weeks (I did not think why he could not do a skin graft).

Anyway, I am not happy about it. I wanted this removed and part of my past and just be watched with a mouth empty of this stuff! Does this all sound correct to you guys? I am looking for another ENT to go and get a second opinion to (and not happy about wasting more time and worry and stress on this!).

Any of your knowledge or advice would be greatly appreciated! Thank you in advance!
Laurie

Welcome to OCF, Laurie! Im sorry you are going thru this! Im sure it must be frustrating for you to have gone to so many specialists and still have your problem.

Upfront I want to make sure you understand, our group is made up of oral cancer patients/survivors and caregivers, not medical profrssionals. We dont have the depth of medical knowledge, years of schooling and patient care your physicians do. Our advice to you comes from what we have learned from fellow patients and caregivers. That said, we will always do our best to help every person who comes to us for assistance as much as we are able to.

I have seen members join us who have had leukoplakia or dysplasia. Most have their "spot" removed out of concern it will turn cancerous. Dysplasia more often does not turn into cancer. Quite often the "spot" grows back so it is removed again. This becomes a cycle of watching their "spot" every day for changes and when it returns to have it removed again over and over. Ive seen several who have been thru this 4+ times. In my opinion after seeing what these other members with dysplasia have been thru, your ENTs method of checking you every 3 months doesnt sound like such a bad plan. A second opinion is always a wise decision. Please keep us posted as to what the 2nd ENT suggests. Heres more info from the main OCF pages...

Best wishes!!!


OCF Main Site... Premalignant lesions

Thank you for letting me be a part of this group!

Thank you very much Christine. There is nothing like the advice from those with experience - this I know from having lots of cancer in family but of another type (ovarian).

I am trying to find another ENT. So hard to find/pick a good doctor. How do you know who is good. And esp with ENT since they cover such a vast amount of things!

This is just scary - which I know I don't have to tell all of you. My thoughts were to remove it and if it grows back it would have to start all over, etc. But, we shall see what the second opinion says.

Thanks again!

Welcome to OCF!
Good idea to get a second opinion. Ask how much experience they have with oral cancer. Wait and watch is fairly common - further changes can be carefully monitored and noted. Any surgery has risks so that is always a variable in decisions regarding procedures. Good luck.

Welcome,

If you haven't already, it's a good idea to obtain written copies of the final pathology report for your records, and future reference. In some cases, 2nd opinions will require the original biopsy slides.

In the near future, like on Friday, the worlds first oral cancer screening test will debut. The OraMark oral rinse test is capable of detecting cells responsible for oral cancer at their earliest stages. I've seen others that use oral screening light with fluorescence to identify cancer, pre-cancer, and other abnormal lesions by dentists, , but not sure if it's used by many ENT's, other than some similar types used during surgery, so all this may be helpful in the future, including liquid biopsies being developed instead of the watch and wait.

http://oralcancernews.org/wp/south-florida-biotech-company-launches-oral-cancer-screening-test/

Good luck

Hi Laurie,

Welcome to OCF! I saw from another post that you are from Central PA and have family in Pittsburgh. UMPC is a vey good hospital and has treated many OC patients (don't recall who or any doctors' names).

I'm from the Lehigh Valley and was originally treated locally. I went for 2nd and 3rd opinions after my first surgery (Philly area). When I had a recurrence, I went back to one of the hospitals in Philly and then to Johns Hopkins in Baltimore. I ended up being treated at Hopkins and that was the best decision I made - I wish I had gone there from the beginning. Hopkins is one of the best hospitals in the USA for head and neck cancer, it is a teaching hospital and have some of the best ENTs in the country working there.

Where in your mouth is the dysplasia? I'm assuming the gum because of your comment about exposed bone (that does make it a little more difficult). My cancer was located on my lateral tongue each time, and I had 4 surgeries in that area. The 4th time was for mild dysplasia. I looked into a clinical trial (chemo) at the time, but opted to have it surgically removed.

I would definitely go for a 2nd opinion and the recommendation may be to watch the area. Wishing you the best!

Thank you so much Susan and Paul! You have been so helpful!

I have actually been busy trying to find another ENT for my second opinion and finally I did. Susan - I am actually going RIGHT where you said! To a Dr.Duvvuri who is an Assistant Professor/ENT there. I am going on June 27th.

I just happened to be able to come in contact with another oral cancer patient/survivor (tonsil area) from a friend of a friend who lives in the area and she recommended this doctor and said he is wonderful and saved her life. I think the whole group there must be very good - or at least the best around in this side of the state of PA. I will be relieved to go and will likely keep them as my doctor. My first doctor studied at Harvard and did his residency and internship at Yale, but hey, who knows and you can get an available appointment with him in a few days.

Paul, maybe they have this new test there! If it was available anywhere around here, it would be there at the University! Thanks for that info. I will ask about it! That is exciting and much needed!

Susan, my mild epithelial dysplasia with keratosis is located on my top right side of my gum right behind my last tooth. I also have epithelial hyperplasma with keratosis (per biopsy) located on the back left gum way in the back where your wisdom teeth would be. That is a bigger area.

Thanks for the advice and good wishes Don!

I will give you all and update when I go and see what they say!