Hello all. I am right at the beginning of this journey and am not even sure if I have cancer? But I cant seem to get a straight answer from Medicare or anyone in the medical profession. So here is my question? I have a small lesion growing on the tip of my tongue. I want to get it removed/ biopsied. My GP told me to see an ENT. I called the ENT and he said he doesnt deal with things involving the tongue and to go see an oral surgeon. So I went to the oral suergeon which cost me $185 just to be seen. He wants to biopsy but it will cost $1,000!! I cant afford it! Im on disability and only have medicare which doesnt cover oral surgery. Who do I see to remove this thing that is covered under Medicare?? There seem to be this giant grey area when it comes to the mouth and whom to see and what is covered. I feel like im in some kind of Kafkaesque nightmare! I cant be the only poor person who ever had an lesion on their tongue? Who do I see? Is it covered? Any help will be greatly appreciated. Thanks so much.

Hi Baron.
Sorry to hear of your frustration, and hopefully, this will not turn out to be cancer.
I don't know that much about how Medicare works, but I certainly know how much dental procedures can cost, I am retired and couldn't afford to keep my dental plan.
So I have two possible avenues that you may be able to take, within your Medicare insurance.
You might call Medicare to find a General Surgeon, and call them to see if they can do the tongue biopsy.
My other thought, even though you don't have confirmed cancer, is that you can possibly go to a ENT Oncologist? Once again, not knowing Medicare, I don't know what referrals you would need to go straight to an ENT Oncologist. But I certainly think that they could perform a tongue biopsy.
Possibly someone that knows Medicare, can comment on my suggestions, to try to avoid getting this done through dentists or oral surgeons, which I assume you have to pay out of pocket.

Welcome to OCF, Baron! Im so sorry to read you're having trouble and cant get the biopsy you need.

Cancer is medical, NOT dental. As you have discovered, not all ENTs are equal. Some specialize in treating oral cancer patients, other primarily put tubes in young childrens ears and some are just basic ear, nose and throat doctors without the extra schooling to specialize. You need to find an ENT who specializes in treating oral cancer patients. If you dont have one right around where you live, widen your area of searching and find the correct type of ENT. The same thing goes for oral surgeons too. Some treat TMJ and do implants while others specialize in pulling wisdom teeth, these are the kinds of oral surgeon you do NOT want. You want one who treats oral cancer patients. I still think an ENT who specializes in treating OC patients is your best bet.

You may be running into issues by how you are explaining things to the places you are going to for help. All you need to ask is if the doctor specializes in treating oral cancer (OC) patients. If the reply is yes, we have many OC patients. Then ask further clarifying questions to make certain you're in the right place. Ask if the ENT does any surgeries on their patients, if so what kinds, ask how many OC patients are seen every week, and then ask if they accept medicare.

Going to an ER wont get you a biopsy and I definitely do NOT recommend paying $1000 for a biopsy! Sounds to me like you're in the wrong place if they are charging $1000 out of pocket instead of submitting a bill to Medicare. If you have Medicare you should NOT be paying medical bills as if you were uninsured. Just in case... Medicare is NOT the same as Medicaid. Double check your insurance to make certain you arent confusing Medicaid for Medicare. Thats the only thing I can think of as to why you are running into trouble and being charged directly prior to being treated. The doc should be sending bills to Medicare and then weeks later sending you the co-pay bill. Of course like any insurance you need to meet your yearly deductible before insurance will kick in and cover things. Since you have been paying directly you may want to check with medicare if this is going towards your yearly deductible. I know insurance is a huge mess and difficult to navigate. Just remember oral cancer is NOT a dental issue, its a medical issue and should be covered by your insurance. Oral surgery is NOT always considered to be a dental procedure, often OC patients will have surgeries done on their mouths which is classified as a medical procedure which Medicare covers. Its all about the coding which only experienced professionals office staff will know how to handle correctly so you arent paying crazy out of pocket fees. Just what you have said about the oral surgeon and their fees tells me they are NOT the right place to go for your condition. You sure dont want an inexperienced doctor messing around and botching the biopsy.

Regardless of if you have to pay or not... the real problem is you have something wrong that must get checked. Cancer isnt something to play around with! Finances are important to all of us but your health does not have a price tag. The biopsy really needs to be preformed so you can take whatever steps come next in removing whatever it is on your tongue. Anything a person has in their mouth without it getting better in 2-3 weeks needs to be checked by a professional. By professional I mean an ENT who specializes in treating OC patients. With it being April, this is OC awareness month where theres all kinds of places who are doing free OC screenings. These dental offices will then send the patient to an ENT or oral surgeon. Ive added the link to our events page so you can search for a free screening event.

Its too early to start looking for oncologists. Until you have a confirmed cancer diagnosis oncologists probably will not even give you an appointment. You also definitely do NOT want a general surgeon doing the biopsy. You want to go to someone who is experienced with OC and biopsying it.

Please dont get discouraged, keep trying. We will help you get the medical attention you need and not get charged high fees for something that Medicare covers. Wishing you all the very best with this.

Main OCF Site... OCF Events, Free Screenings

Christine, Thanks so much. You have pointed me in the right direction. I will try and find an ENT who deals with OC patients. I couldnt believe that an oral surgeon was my only recourse? They dont take Medicare. The oral surgeon thinks whats on my tongue is either a Squamous Pappilloma or an elongated taste bud. Either way I want it out and properly diagnosed. I live in upstate NY. So worse comes to worse I can always go to NYC where I'm sure there are dozens of ENTs who treat OC. And take Medicare!! I just found it astounding how complicated it has been to find out what kind of Doctor to see? I have an appointment this Friday for a teeth cleaning and checkup. Hopefully my Dentists will know of a good ENT. Thanks again. I will keep you all updated.

BaronO,

I live and was treated in NYC, and in my opinion, it’s the best, besides having a number of options, all take Medicare, which I have.

I’ve been treated at four hospitals in Manhattan, that’s where to you go if you decide. You have such places such as Memorial Sloan Kettering, NY Presbyterian, Columbia University, Lenox Hill Hospital, NYU, Beth Israel Union Square which is part of Mt Sinai, but seperare places, and New York Eye and Ear Infirmary to name a few.

There is a ACS Hope Lodge on West 33rd Street, where I stayed for free for 6 weeks in 2013, and it’s the best!

I hope this helps, and good luck.

The Hope Lodge is for patients who live at least an hour away from the treatment facility. Im pretty sure the patient must be in active treatments for their cancer to stay there. Hope Lodge has places near almost all major cancer centers making it so much easier than commuting on patients at a time when they arent feeling the best from their treatments.

Im very glad to read you have a better idea about who to see and how to go about being seen and finding the best way to eliminate whatever is going on in your mouth. I really hope it is NOT cancer and is something thats easily treated. Just make certain anyone you go to that wants to remove the spot that they are very experienced and already have tested the tissue so they know what it is. I understand you want it gone but you also need to get the right type of doctor to help you so nothing gets botched or made worse due to being in a rush to get rid of it.

Keep us posted on how you are making out. Best wishes!!!!