Wow... Okay I read this all the way back from the beginning, hopefully your biopsy went well. I've never heard of an ENT passing off a biopsy to an oral surgeon. Often they don't do them in the office - they prefer to do it in a surgical clinic or the like - but they prefer to do it as opposed to giving the job to someone else. Realistically speaking they send you to an oral surgeon, who will do it, but the follow up to this dx if you get a result of "cancer" is surgical removal, possible reconstruction and ideally some kind of neck dissection. This has to be done by an ENT (too far out of the oral surgeon's skill set) so sending you off for just the test seems stupid, IMHO. And believe me if it's cancerous based on location- it should include even a partial neck dissection.
That said I am going to parrot Christine. Over a long period of time not likely it's cancerous. However if you read my history - I had a problem for 4 years! Two years to my first negative biopsy another two years to my positive one. This cancer can be crazy aggressive, but it can also be slow moving in some forms. I think that may have something to do with your immune system and life style. Or just that it is in a dysplasia or precancerous state. Regardless it should be dealt with. And even if it's a negative dx - if it doesn't heal you should be checked regularly. Hugs

Cheryid - 4 year ENT's who mostly see lots of ear infections and strep throats in kids, don't' do much in the way of surgical work (even small biopsies). They, like general MD's, and general dentist,s refer out to either a 6 year surgical ENT or an oral surgeon.

So how do you find out if an ENT is a 4 year ENT vs. 6 year surgical ENT? That is besides getting a referral from a doctor, recommendation from someone, or calling their office and asking? Is there a website that lists the doctor's credentials?

Their office will tell you if you call. But 6 year ENT's are all head and neck surgeons. They do surgery all week and recalls on surgical patients they have seen. In general while they know more about oral cancers than most, they are a refferal doctor and get most of their patients from someone else�including 4 year ENT's, general MD's etc. But when you call the doctors office you don't need to ask about his years of school or his years of residency ( surgical residency on top of regular) you just have to ask if he/she is a head and neck surgeon. With that question you know it all. But you really don't need to seek one out, just have your regular ENT refer you to the person they prefer for the biopsy. Taking a small sample of something is no big deal for the doctor or the patient, the person that really makes the calls is the pathologist that reads the sample. You won't interact with them and they will be picked by the person taking the biopsy.

Brian,

Thank you for clarifying the different ENT types. I honestly did not know that all ENTs were not also head and neck surgeons.

In my case, I first went to my primary care physician, who referred me to an oral surgeon for the biopsy, and when the biopsy came back positive I went to a local ENT (referred by the oral surgeon). This ENT was a head and neck surgeon in private practice with other ENTs. The doctors in this group did surgery 1-2 days per week and saw patients in the office the rest of the week. The patients they treated included kids needing tubes, allergies and other H&N conditions. Over the years I�ve been to 3 other ENTs all of which were also head and neck surgeons, located in larger cities and affiliated with major hospitals. I called the local ENT�s office right after I received the OC diagnosis to make an appointment with him. I was told the first available appointment was about a month away. I wasn�t happy with waiting that long (I wanted to see him NOW), so I went back into the oral surgeon�s office and had them call the ENT�s office � I then got an appointment that same week.

On the OCF forum I and others have often suggested to newbies who are worried they have oral cancer to seek out an ENT who is familiar with oral cancer (or something to that effect). Based on what you said it is probably hard to get an appointment with an experienced ENT/H&N surgeon unless you already have an OC diagnosis. My guess is that a lot of ENTs located in smaller cities or towns who are in private practice primarily treat other head and neck conditions.

Based on the many discussion I�ve read on the forum from newbies worried about having oral cancer, their concerns are often dismissed by their doctors particularly if they don�t fit the antiquated �oral cancer profile�. So what is the best advice we can give to these newbies? Yes I know they need a biopsy to find out definitively but it can take months to find the right doctor to do this.

I think that regardless of what basic specialty you look at, there is a wide curve on who knows what. I was seen by a general ENT, who with really obvious oral cancer symptoms put me on antibiotics for two weeks to no avail, and when that didn't get my neck lump to go down, he just wanted to switch antibiotics. I didn't know much about the ENT world in those days, and had never even heard of oral cancer, and I went to a second one (also a generalist). However this was an older guy that had practiced for a couple of decades, and obviously had seen a lot more. He got what was going on right away and on my first visit the fine needle biopsy of the node was done. Both generalist ENT's, two very different levels of knowledge.

Having said all that, I think that what people would prefer here (and me too), is that general MD's are not people's sole source of information when they have a problem, and they get the most first look opportunities. They seem to be the group most behind the curve, and take the longest to refer and get it right. Dental people are really getting pushed to get this right, but there is still a huge number of them disengaged from the oral cancer issue. I won't go on a rant here as to why I believe this is, but it is a fact. They know the basics, and certainly see a ton of oral lesions of all types. However peer reviewed published data shows that most oral cancers are found/diagnosed outside the world of dentistry. That just means that they are not looking to me, since referring suspicious tissue out to someone further up the food chain is so easy to do. I think that non surgically oriented ENT's are still a good call, but no more so than an oral surgeon. (Who is asked to biopsy lots of things by his referring generalists).

We have a problem in the US with enough people being up to speed about the OC problem, HPV, what oral lesions are dangerous, and not enough people referring suspicious things out instead of watching and waiting for the obvious to heal when it isn't going to. I lay blame across all specialties, because here on these forums we have been hearing it for more than a decade - people come and they have the same issues, misdiagnosis, lack of diagnosis, failure to refer when something does not resolve, and every doctor type except oral medicine specialists in dentistry, and head and neck surgeons, make these mistakes with too great a frequency and have dropped the ball.

So I guess you would call me an equal opportunity layer of blame, and ENT's are just one of many that could get this better.

Brian,

Great description of the landscape of the small pads of expertise amongst the quagmire of the mass of informed and unqualified.

Your post struck a cord in that it was random dumb luck that I found a highly qualified specialist who both my wife and I have unflinching and unwavering trust in all things oral cancer.

He is a head and neck surgeon and was selected to the fellowship program at MSKCC. So very fortunate to have someone so qualified and received specialist training in a world class institution.

We changed insurance recently and had to go around a few times to ensure our access to his network. No plans to switch, EVER.

Don

This discussion reminds me of a question - Professionals along the way have asked if our general dentist found my husband's lesion (BOT). He did not.

My husband had typical sudden appearance of enlarged, non-painful, cervical lymph node. Examined by Primary Care Physician and needle biopsy was performed the same week, after general surgeon in same office, was brought in to examine the node. Fortunately, the general surgeon was immediately suspicious of SCC based on presentation alone.

After positive results and CT, referred to oncologist & ENT. When scoped in office by ENT, lesion was not visualized. Another scope under anesthesia, still not visualized. Random biopsies obtained based on CT which picked up the tumor location.

My question - is it possible that the tumor was that deep that even under anesthesia it was not found? I ask in part because because we later found out that this ENT was not experienced in cancer (per above discussion) and we changed to one trained at MD Anderson.

It would be very common, especially in HPV+ oropharyngeal cancers, for the primary to be non visible or occult on physical visual exam with a scope. These things can be buried deep in the tonsillar tissue, the tonsillar crypt, or in the lymph tissue on the base of the tongue for quite some time before producing a surface lesion.

7-8 years ago doctors were calling these an "unknown primary" when you had a cervical node (which is never the primary) positive for SCC and an occult oral environment. We subsequently learned how these HPV+ cancers seldom present with surface lesions, and because they metastasis to the neck through the normal lymph drainage passageways very rapidly, the primary can be even too small to see in a scan. Everyone was shocked when OCF sponsored at study at Johns Hopkins and we determined that the primaries could be a small as 2-3 mm in size, and be spinning off mets to the cervical nodes. That was unheard of at the time, as usually a primary has to be much larger before it metastasizes. But the unique location of these cancers directly within the lymph chain allowed it.

Remember that all new cells, and cancer cells included, begin in the basal layers of the epithelium which is relatively deep in the architectural structure of tissue, and migrate towards the upper epithelium that you can see.

Note that a subsurface 2-3mm primary can be easily missed even by a CT scan that looks at slices of your body about 3-5 mm apart. And unfortunately these "unknown primary" patients got radiated in much larger fields unnecessarily since a specific target was not found. The most likely areas were nuked. Wild ideas were postulated at the time like, a person's immune system had finally kicked in and taken care of the primary leaving the node in the neck untouched. Really? A systemic defensive mechanism goes after one little thing and the other cancer locations it leaves alone? Nonsense. But we had posters here that were told that.

For a much informative but not hard science read, I found "The Emperor of all Maladies" a great book which in a very readable and entertaining way chronicles cancer treatment in the US from the 1940's to present day. It is scary to read about the things we were doing into the 1950's and 60's to people with no idea if it would work or not, no controls or even the idea of a proper clinical trial, including massive radiation dosages to the chest (and heart) of women that had breast cancer. Of course in the 1940's no one survived treatment. But it is all there to read and the formation of the American Cancer Society is well covered too, which had a few interesting twists in it. We have come a long way, but it just reinforces in my mind how far we have yet to go.

Thanks, Brian for a very clear explanation. My husband's tumour is endophytic and I have always wondered how that is significant. Now it is much clearer to me.