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#25263 - 06/19/02 01:19 PM Oral Surgeon appt 6/24
Anonymous
Unregistered


Hello Great List,
Thanks to the info here and some (gentle) prodding/suggestions from Brian H. especially, I have an appt. to have my "lump/bump thing" looked at by an Oral Surgeon on Monday. It took about 20 minutes on the phone with our (annoying) health insurance to find a "network provider" but we did. When I first called to make the appt. I think I was getting the brush-off, as the scheduling gal said she'd have to mail me a "packet" to complete, then the Dr. would "review it" and THEN (maybe) set my appt! Good lord! Fortunately when I asked "but what if I have a growth in my mouth", etc. she changed her tune and was very pleasant. I guess they must be swamped with TMJ patients or something! Anyway, I've got the consultation for Monday and I'm trying not to be too nervous. The "thing" will have been there at least a month, tomorrow, as that is when I noticed it - who knows how long it really was there (right tonsillar fossa.) Thanks again for the wonderful information here and for the guidance of "who" to see (ENT vs. Oral Surgeon vs Dentist) etc. I'll be sure to let you know how it goes.
Thanks,
Michelle (Happy Dog)

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#25264 - 06/19/02 01:40 PM Re: Oral Surgeon appt 6/24
youngerag Offline
Platinum Member (200+ posts)

Registered: 03/19/02
Posts: 234
Loc: Wilmington, Delaware
Good Luck Michelle. Keep us posted on the outcome of your appointment. Many good thoughts are with you.

Anne.
_________________________
Anne G.Younger
Life has never been better.

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#25265 - 06/26/02 03:36 PM Re: Oral Surgeon appt 6/24
Anonymous
Unregistered


Hello again!
I had my (first and only) Oral Surgeon visit on Monday 6/24. He saw the "thing" I've been describing here on the BB and he said it "did not look angry" and therefore to check back with him in 3 weeks. I know *full well* I should've opened my mouth (no pun intended) right then and DEMANDED a brush biopsy (or other Bx) but I just went along. Now I am furious with myself that I've got to wait for him to "check it" again. Something seemed to "possess me" in that damn chair and I didn't stand up for myself. Oh well. This O.S. did have another O.S. in his office come take a look, and he said it was "probably nothing"; when I said what do you MEAN "probably" and he said "well the only way to know for sure is to take a piece of it out and we don't need to do that right now"... this Dr. did get his digital camera at least and took a photo of it, so we'll have something to compare to in 3 weeks. The original O.S. DID comment that my uvula had a couple "red dots" on it but he didn't seem concerned about THOSE either! And I hadn't even noticed THOSE myself... am I just kidding myself by waiting the 3 weeks - i.e. should I go back to these guys and insist on a Bx NOW, or find another O.S. (or ENT?) and move on right away?
Thanks for listening- I feel like a big wuss.
Michelle and herd (Happy Dog)

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#25266 - 06/26/02 08:45 PM Re: Oral Surgeon appt 6/24
kimt30 Offline
Member

Registered: 06/19/02
Posts: 6
Loc: Michigan
Michelle this is your body. You dictate to the doctors what you want done. You need peace of mind to what the "thing" is. This is what we pay for. I was advised by my ENT that a brush biopsy doesnt get enough tissue/cells. It can give you a false negative. My dentist did a brush after a year of him watching it, which was negative. Im still waiting on the tissue results that my ENT did.If you still dont feel comfortable with the answers you get after the brush, if you do it. Go for a 2nd opinion. Dont be afraid to tell them how you feel. Good Luck!

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#25267 - 06/27/02 10:48 AM Re: Oral Surgeon appt 6/24
Mark Giles Offline
Member

Registered: 03/19/02
Posts: 12
Loc: Michigan (Southeast )
Michelle,

My advice would be to contact a good ENT as soon as possible. In my humble opinion, which Brian may well disagree with, when it comes to cancer, dentists, including oral surgeons, are simply not up to the task. The sign of a good dentist is that they actually recognize their limitations and refer you to an MD/DO.

My own dentist referred me to an oral surgeon last October, when a sore under my tongue did not heal. The oral surgeon then did an excisional (not brush) biopsy, which then proved to be positive. He was very prompt in giving me the bad news, and immediately referred me to an ENT. Since this oral surgeon was an experienced maxillofacial surgeon, who performs a wide variety of restorative procedures, I asked him why he was "passing me off" to an ENT. He said once oral cancer has been positively diagnosed, the ENT is the next appropriate stop. He said the work of an oral surgeon is primarily restorative, not curative, and something as serious as cancer is the proper domain of the medical community (MDs and DOs). Now that's a good dentist!

Assuming you want real peace of mind, Michelle, I would find a good ENT as quickly as possible and have him or her do a thorough workup. It may very well end up being a completely benign condition, but, regardless of outcome, you want to make sure you receive the diagnosis from the person most qualified in the area of head and neck cancers. Simply revisiting the oral surgeon while he "tries" different approaches is a waste of precious time.

Remember too, that the ENT is not the be-all and end-all when it comes to oral cancer. As Brian has pointed out many times, oral cancer requires a multidisciplinary approach, tapping into the expertise of dentists, oral surgeons, ENTs, head and neck surgeons (many, but not all ENTs are), medical oncologists, radiation oncologists, and speech therapists. But in terms of initial diagnosis, and possible surgical treatment, the ENT is really the expert in this area.

I would also like to mention that my own ENT echoes the comments of kimt30's ENT (see previous post): a brush biopsy does not provide adequate tissue sampling to render a definitive diagnosis, especially with certain types of oral cancer such as tongue cancer (my type). This is not to say that it's not a valuable screening tool. In other words, if the test is positive, it has obviously proved its worth by providing an early diagnosis and possibly saving one's life. But if it's negative, the result may be inconclusive. Cancer cells may still be present in the deeper tissue layers, that the brush will never reach. Here again, this is a judgement call for a qualified ENT, who will assess the location of the lesion, your overall health history, etc., so don't kick yourself for not demanding one at the oral surgeon's office. (Frankly, I think the brush biopsy is designed primarily for dentists, whom we don't want wielding scalpels too close to vital structures such as one's tongue! My own dentist would probably agree.)

Best of luck to you, Michelle, and please remain optimistic. Remember, as of this moment, you have absolutely no reason to be otherwise.

Mark
_________________________
Mark Giles
Stage II Tongue Cancer Survivor

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#25268 - 06/27/02 09:07 PM Re: Oral Surgeon appt 6/24
gnelson Offline
Senior Member (100+ posts)

Registered: 06/26/02
Posts: 194
Loc: Pennsylvania
Michelle, I went through exactly what Mark Giles did. I haed loose teeth pulled by my dentist who didn't like the looks of "things", he sent me to an oral surgeon who did one biopsy that showed Verracua. He didn't like that and called me and demanded I come in for a second biopsy, somewhat deeper.

I really did not want to but he insisted. After this one my mouth went crazy growth was unbelieveable, sent me to ENT doctor. Things moved real fast then, tumor panel, tests, removal of more teeth, Then surgery to remove tissue and part of bone. That was two years ago, but I still need more reconstruction. After all this I'd say don"t fool around with anything wrong with your mouth. Take action. gnelson
_________________________
gnelson, StageIV, cancer free since Nov.9,2000

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#25269 - 06/28/02 12:09 AM Re: Oral Surgeon appt 6/24
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4646
Loc: Laguna Niguel, CA
Mark is consistently one of the most informed posters on this board, but he is right, I disagree with a little bit of his last posting. For sure anyone involved in general dentistry is the guy that I think should be finding suspicious tissue first, after all, they are in a lot of mouths every day. And I would have to say that I don't believe that it is a general dentists position to be making a cancer diagnosis, but they should refer the patients out to someone more qualified. That person should be doing a biopsy of the suspect area since that is the only definitive way to diagnose cancer. This biopsy and diagnosis procedure is well within the realm of the oral and maxillofacial surgeon. In their defense I would have to say that these guys do some pretty sophisticated surgery. In one procedure in particular, a Le Forte, they take your face apart in about 12 pieces and resize the components and put it back together. A general ENT isn
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#25270 - 07/01/02 02:38 PM Re: Oral Surgeon appt 6/24
Mark Giles Offline
Member

Registered: 03/19/02
Posts: 12
Loc: Michigan (Southeast )
First of all, when it comes to the field of dentistry, I will always defer to Brian. He's worked most of his life in the dental implant industry, has lectured throughout the world on the subject, and has, no doubt, rubbed shoulders with the "creme de la creme" of the dental community, so his credentials on the subject are not open to question.

Second, I agree with him that I used the word "restorative" inappropriately in the above post. I meant something akin to "cosmetic" or "elective". The oral surgeon was simply saying he did not wish to deal with a pathological process, like cancer.

I am certainly not here to disparage the dental profession in any way. My experience with both my dentist and the oral surgeon who biopsied my tongue has been a positive one. I was never the victim of "benign neglect" on the part of my dentist. Rather, I was the victim of my own ignorance and inaction, as I allowed 4 months to pass before seeing my dentist about the sore
on my tongue.

I don't view this as an argument about the relative worth of dentists vs. doctors. Both are (or should be) allies in the prevention and treatment of disease. And both have an important role to play in managing our personal health care. The question is: What is that role?

The fact is that doctors, by virtue of their extensive and intensive training, view the human body as an integrated whole. Although most will eventually specialize (e.g. surgery, dermatology, psychiatry), they will all endure several grueling years of medical school that will expose them to the intricacies of all the major organ systems. Even during their residency, when they begin to branch off in different directions, they are still required to perform 6-month rotations in specialties other than their own.

Dentists, however, are specialists from Day One. The focus of dentistry is the human oral cavity and its surrounding structures. And while they also take courses in anatomy, physiology, etc., the bulk of their training centers around a relatively small piece of the body's real estate. There's nothing wrong with that, but it's not the best training for dealing with systemic disease.

And I happen to believe that cancer is a systemic disease. No matter how localized the primary lesion may be, the body, mind and soul is under attack, and remains vulnerable to further attack. I have no doubt that an oral surgeon may have the technical prowess to disassemble my face and piece it back to together. But I want a doctor who can see beyond my oral cavity, who
can order up diagnostic tests, interpret those tests, and make sound clinical judgements about the disease's effect on me as a whole.

Obviously, many patients have been successfully diganosed and treated for oral cancer by dentists and oral surgeons. And just because ENTs have an MD degree doesn't make them gods, or any less fallible than the rest of us. As Brian indicated above, he was misdiagnosed by an ENT. On the other hand, there are 2 replies in the "Introduce Yourself" section, under "See a doctor, not a dentist" which express doubts about dentists' ability to detect cancer. (The oral surgeon who biopsied my tongue remained certain I did not have cancer, even after excising the tissue.)

So, in Michelle's case, she is already seeing an oral surgeon, and is having some concerns about his treatment plan (or lack thereof). Rather than spending too much time at this level of expertise, or hopping from one oral surgeon to another, I think she'd be wise to consult an ENT, who not only specializes in diseases of the throat, but has the broader perspective that comes with a medical school background and many years (we hope) of clinical experience.
_________________________
Mark Giles
Stage II Tongue Cancer Survivor

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#25271 - 07/01/02 03:59 PM Re: Oral Surgeon appt 6/24
SandraW Offline
Contributing Member (25+ posts)

Registered: 06/19/02
Posts: 37
Loc: North Carolina
Sandra here (Helen's daughter). I posted the "See a doctor not a dentist" message. To clarify, I certainly don't expect a dentist (or a primary care physician for that matter) to be able to *diagnose* oral cancer. But I do expect them to know a lot more than I do and I expect them to recognize when a lesion is serious (though out of their purview) and needs followup.

An "It's not anything serious" or "It's only a fever blister" from a respected dental professional can cost a patient weeks if not months of precious time in following up on a lesion that could be cancer.

My mother's surgery is tomorrow, July 2nd. Say a prayer for her. Thanks.
_________________________
Sandra
My mother's caregiver
Diagnosed 6/02 (at 84) with Stage 2 tongue cancer; surgery 7/02
Diagnosed June 03 with recurrence of tongue cancer and cancer of soft tissue under ear

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#25272 - 07/01/02 07:57 PM Re: Oral Surgeon appt 6/24
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4646
Loc: Laguna Niguel, CA
I agree with you both. I want a dentist to recognize that something is amiss. I see him every 6 months, and he's looking around in the right spot. I want an oral surgeon, a periodontist, or and ENT to biopsy the area and tell me if it is cancer or not. Then I want a team of oncologists of various disciplines, surgery, radiation, chemo etc. to hopefully cure me. After it all that, if there is any reconstructive work to be done, I want a prosthodontist to replace that missing chewing power. That is my idea situation. In this world it doesn't happen that way often, and that is the problem.
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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