I have been back to the head and neck clinic, after a referral by my dentist. Now what he said is this.
I have an area of leukoplakia along the scar of my graft and and my tongue. The Docs suggestion is watchful waiting with monthly hospital checks. His opinion at the moment is that the area is not large enough to biopsy yet.
Now after a search I find that leukoplakia is a precancerous condition, (all be it at the low end of the scale) Taking in to account my previous diagnosis, and several surgeries for high grade dysplasia SHOULD I WORRY :rolleyes:
Or can I just call it a nuisance and try to forget it.
Thanks for any advice
Sunshine.. love and hugs
Helen
What you should do Helen is what is right for you and your peace of mind.If that means insisting on more investigations then do it.Do it for you and the natural concerns that every one in your position has.Dont let it develop into an elephant under your bed.
love liz
Helen, in no way would I "forget it". I would in this case put it in the "nuisance" column. I know you have heard this nearly a million times since you first arrived here but, it isn't until they say it is.
For about three years before being told that it was, I listened to my ENT doc use the leukoplakia term in every dictation he did for every single visit I made to his office. At that time I had no idea what the hell leukoplakia was, thus I did not worry about it. Now though as I said above, I would put it in the "nuisance" column and make damn sure that it was followed on a regular basis.
You will be in my thoughts and prayers. Continue being the strong lady we all know you are.
H&K
Bill
Helen,
I am a very agressive advocate for myself and my patient's after being pacified by three surgeons for three years. The fourth did the biopsy and wow, an elephant. I would have been overjoyed had the biopsy came back negative and deemed unnecessary, even after the pain and discomfort and inconvenience of the procedure.
I have stated in other posts that, "...I would much rather see unnecessary biopsies of innocent lesions than no biopsy of a potentially cancerous lesion."
Biopsies are far less expensive than the treatment costs for cancer. If professionals were more prone to biopsy, many mature aggresive cancers would be picked up in the early stages and treated more successfully at a lower cost. Not to mention the netter outcomes for the individual patients.
I say, go with your gut. If your current doc won't biopsy the lesion find one that will. I agree with you 100% especially with your recent medical history.
That's my two cents.
Take care of you!!
Cheers,
Mike
Helen,
I have to echo what Mike is saying. My biopsy was so small that it actually removed the whole tumor. Despite that, I still had an addtional 2cm of tongue removed around the site of the biopsy. Anything you can see is not too small to biopsy.
Jerry
Hi All
The head and neck clinic I attend is part of a large Maxillofacial unit
Dr Mike Our Health system is very different to yours, and just switching Docs is not really an option, HOWEVER none of the Docs are above fetching in a colleague for a second opinion.
I was also advised that if I had any worries to phone in and I would be seen immediately.
So I go back three weeks on Monday, so till then I will keep a close eye on the area, and report back to you all
Thanks for you input.
Sunshine.. love and hugs
Helen
My dentist told me exactly the same same thing last month and it turned out to be thrush. Your ENT or Head & Neck surgeon should have the last word.
Talked to a new Chemo guy today. Anyone know much about "adding" Bevacizumab (Avastin) and Tarreva to the mix. This is in addition to the std. cisplatin.
Thanks.
Bill in NC
Gary,
Not all dentists are created equal. I pesonally view dentists, ENT's, surgeons and oncologists as a team. If everyone knows the play book scenarios like yours should not happen.
There is a simple way to diagnose thrush.
Swab the area, wipe it on a microscope slide, stain the sample (various stains are available), wash the slide and have a look. Fungal hyphae appear stained. If we see this it's a positive diagnosis and then we treat it. I use Nystatin suspension for small localized areas, diflucan for larger areas, and for the stubborn cases ( this may disgust some people) both of the above plus antifungal vaginal suppositories.
Unfortunately most dentists don't have a microscope in their offices, and forget their microbiology, so they refer an otherwise simple procedure and cause a lot of anxiety for patients.
ENT's, great guys!! I personally feel that if I can perform this simple procedure and confirm a diagnosis in less than 20 minutes I should not contribute to their already bogged down schedules. If it's not thrush then I refer the patient.
I'm not trying to step on toes and I know it's not an ideal world. The mouths I treat are brought in by people who deserve the same care that I would expect regardless of my knowledge.
Cheers all,
Mike
BILL'S POST: Talked to a new Chemo guy today. Anyone know much about "adding" Bevacizumab (Avastin) and Tarreva to the mix. This is in addition to the std. cisplatin.
Thanks.
Bill in NC
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BILL: I'M AFRAID YOUR QUESTION WILL BE LOST IN THIS THREAD. POST IT AGAIN UNDER 'POST NEW TOPIC' AND I'M SURE YOU'LL GET SOME ANSWERS FROM OUR FRIENDS HERE! PM ME IF YOU'RE UNSURE HOW TO REPOST!
Lois
Tarreva
..correct spelling is Tarceva
(sorry about hijacking this thread!)
Dr. Mike,
My dentist is (and has been, overly cautious) since he couldn't diagnose a 6 cm tonsil tumor that was a huge big tan rubbery blob displacing my uvula. He means well and I have been with him a long time. My H&N cultured it and it was positive for candidiasis. Already been through the Tx and moved on.
I have used Nystatin in the past - yuck! Give me Diflucan or Clotrimizole troches anyday The troches were actually quite tolerable and not bad tasting at all.
It was just a little strange to have thrush after all of this time (almost 5 years post Tx). I had IMRT and my salivary function is practically normal. My blood chemistry is all within normal limits (excpet my liver enzymes but I have had HCV for over 50 years so nothing new there). My general health is better than ever except for some minor collateral damage from the RT.
Gary,
I'm glad to hear that you are in good health..afterall that is most important to your well being. I too can say the same regarding my health and I feel blessed, as I'm sure you do, that we can say this..we Gary, know we are healthy due to all the attention, care and diagnostic tests we have been through.
Here's a little spin on the treatment that we have been through and most don't realize(albeit, different cancers, different areas and different treatments)in our current situations we know we are healthy that's better than the average Joe walking down the street...to me, that's a wonderful feeling.
It's an ever changing dynamic beast, the human body, then add the rigors that cancer therapy adds.
All it takes is something to upset the balance of the normal flora of the oral/nasal cavity and viola...thrush. I have had similar troubles and get equally as disgruntled as you. My cancer was in my leg and the surgical margins are past the jewels...so I'm sure I do not have to tell you where I have some recurring "yeast".
Could open a bakery or a brewery, diflucan is marvelous, my "smarties" minus the chocolate. Topical antifungals help but are greasy and uncomfortable...(ladies, I'm probably one of the only males with sympathetic ears regarding yeast infections...hehe).
Any how Gary, as for your dentist, if you are still comfortable with him you should talk to him about your concerns. Too often I loose a patient to another office, (it happens all the time), because they feel embarassed, or don't want to waste my time, or don't want to tell me how to do my job, or don't want to step on my toes. One thing cancer has taught me is I will state my opinion when it's warranted and accept all praise and criticism...cancer removed my filter, it didn't change my opinions but, now those I come in contact with hear what I have to say whether they agree or disagree. Cancer also taught me that I am human and no better than any other person, so...I have Dr. in front of my name, big deal...I respect, and appreciate and am no better than anyone else.
We tend only to hear the negative things after people leave and rarely get compliments. I tell all my patients, "If you like how we look after you tell your friends, call me or come talk to me about any concerns anytime...and I will do my best to rectify any problems or make modifications to my "routine" if it is percieved to be lacking, If you are ever uncertain, or unhappy, or feel like you were not treated appropriately in any way regarding any part of our realtionship with you call me and I will do my best to rectify the problem." I then give them my home phone number and home e-mail address.
We, (dentists), get trapped by our "routine" because it is preached to us from day one in school. It's hard to add and welcome new additions to that routine. I never do the same examination sequence twice...I know I cover everything because my assistant has a checklist. This allows me to stay fresh and when available add new ideas, techniques and equipment.
Jerry and I are both advocates for the VELScope and are both registered users of the technology. We believe it is in the best interest of the people we treat to offer them this technology, it's expensive, but my patients deserve the same as I do. I'm sure I have and/or will err in my diagnosis or treatment of someone. I would like to have that "someone" fill me in on it so I can learn from it and not have it happen to anyone else.
To your continued health and happiness,
Mike
Mike,
I have talked to him, he has seen exactly 3 oral patients in his entire career (me being one of them)- I started with him as patient number 12 in 1971. He's a great dentist and I still have all of my teeth today. But one thing he is not, is an ENT or head & neck surgeon which is highly specialized. Most tumors aren't even in the normal field of view for where most dentists and hygenists go.
I think its a great thing that dentists are getting access to more screening tools. I would like to see some hard data in the future that this really is resulting in a difference in early detection and not giving patients a false sense of security. I had (and still am) getting regular oral cancer exams by my hygenist -they still "missed" a 6 cm highly visible tumor. Even went so far as to tell me that they didn't think "I had anything to worry about". This is not just my story here but many others as well. Brian has worked long and hard on working with the ADA and educational programs for dentists. IMHO I think that this a worthwhile endeavour - but knowing what I know now, I would be getting regular screenings from an ENT annually after 40 or so anyway and earlier if tobacco and/or alcohol were a regular part of my lifestyle.
Gary,
Sure ENT's are specialized, as are dentists. Belive it or not dentistry used to be a specialty that one went into after medicine.
You should be a little more thorough before you belittle my passion.
You have data on your statement Gary, because if you do I'd like to see it; "Most tumors aren't even in the normal field of view for where most dentists and hygenists go." How would you know?
By nature of her allowable duties , a dental hygienist, RDH, is not able to make a diagnosis, interpret a radiograph or perform an exam. A literal interpretation of this is, she cannot tell you you have a cavity, or gingivitis because they are medical terms that are diagnosis. She can say, you have a brown spot on your tooth, or you have red bloddy gums.
This is a difficult subject for a lot of dentists to swallow (pardon the pun) especially with the dental HMO's that are out their.
The law in the U.S. and Canada is clear on this.
If anyone has been charged the fee for an examination in a dental office the Dentist had to conduct the exam. If you did not have a dentist, DDS or DMD actually look in your mouth it is fraud.
You are confusing the roles of a Dentist with that of a Hygienist.
Well this has gotten plenty out of hand.
In my own case I had my dentist and hygienist miss a good-sized visible lesion right next to a crown that was being done. Several months later when a node jumped out in my neck, I went to an ENT (with a neck presentation and my level of knowledge at the time dentistry didn
"There is NO EVIDENCE of what Gary states related to locations for oral cancer to occur and to whom it is visible." And where did I make that statement in this thread?
If visualization is that obvious then why bother with scopes or mirrors?!?!
I know from personal experience that the visual exam I get from my hygenist consists of looking under my tongue. The tongue would have to be moved to the side with a tongue depressor to visualize the tonsils since they are jammed in by the side of the tongue and how do you visualize the base of the tongue in the dentists office? My H&N guy uses specialized heated mirrors for that purpose (and another un-named dentist here has expressed the same concerns to me - and he uses a VELscope too). I'm always willing to learn something new.
Sorry to hijack your thread Helen!
Gary - with respect as always for your significant knowledge. I stated clearly the issue is not the types of equipment used, or even heating mirrors over an alcohol lamp (to prevent fogging as people breath through their mouth
Brian, as a cancer survivor I fully understand where you're coming from. We want all the 'advance notice' we can get. However, I think it's optimistic to expect most dentists to be 'cancer aware', as it were. Dentists are concerned primarily with teeth and the underlying bone structure. That is the way they are trained. And, you must admit, oral and H&N cancer are not all that common.
As you point out, symptoms may include some ulceration or lesion in the mouth (or in my case, a swollen lymph node under the jaw). In most cases however, it is a damnable disease that progresses without symptoms until it is well underway.
In my own case, my GP (not even a GP, really, but the nurse practitioner) picked up on the swollen lymph node as an indication of cancer. The ENT blew it off as a 'plugged saliva gland', costing me 4 additional months before diagnosis.
Should dentists be 'cancer aware'? Sure, but a comprehensive screening won't be happening anytime soon.
An interesting discussion.Can i just throw in my two cents worth by asking how ANY dentist can see a man with a huge ulcer on his tongue clearly visible to the naked eye four times over six months,and still not advise him to see a doctor?
Cookey - This is a complete failure on the doctors part. This is what malpractice laws were intendend to address. Were I the patient in that case, I would be in court with the individual who failed to refer me to someone for evealutaion... (had he not aready killed me and then my heirs would be asked to continue in my behalf) and the doctor would lose. In the cases I have testified at, the very situation that you describe HAS occured, and those dentists are not just out money (via their insurance companies settlements, since they know these are not winnable), the insurance companies have twice - in cases that I have been invovled in - cancelled the docs insurance. In the US you cannot practice without it. They are essentially out of the dental business. In the UK things are different because of the nature of socialized medicine, and they have some protections from prosecution as a result.
Riley - dentists are trained in school about oral cancer and how to screen for it. That they do not, is not an issue of training, it is an issue of choice. Faliure to do a through screening is a failure to meet accepted standards of care. That the public has been ignorant of this, and that the dental community has let us down for decades, does not make the facts any different. This will change, even if dentists have to be litigated into making the change.
Brian, Riley, Cookey,
I would like to reiterate what Brian stated. Dentists are all trained extensively in H&N examination and H&N, OC cancer. We all had to pass standardized board exams sometimes more than one set depending on which state/province or county you practice in and these exams have a large section devoted to Oral diagnosis. We all know what to look for and what the signs and symptoms are and what normal and abnormal feel and look like. If individuals Dentists, MD's or whomever for that matter, as Brian has stated many times, choose not to look for it, it will not be found or referred.
It does not take long to do the full OC exam of the H&N and intra oral, and if you look at the description of a comprehensive/new patient oral exam it includes (I am not sure of the wording in the U.S. but I know it's there)a full head and neck as well as oral visual and palpation examination with documentation of abnormal findings.
It amazes and saddens me when something so simple as a tongue ulcer is overlooked or put off. If it is not normal looking and is present for longer than 14 days and doesn't go away, regardless if it is painful or not, it needs to be investigated.
My 2 cents,
Cheers,
Mike
Mike........NOWWWWWWWWWW we're back where we started......on the subject of professionals' role in the early detection and diagnosis process. There are far too many patients on this forum who can tell tales of having their cancers overlooked by both dentists and ENT's. Mine was not just overlooked......It was absolutely not recognized when it was there for all to see, ...classic text-book oral cancer. My dentist simply did not give me the care that I had a right to expect. There is a presumption of proficiency with our professionals. Mike has define what that is for a dentist, in the area of oral cancer detection. The facts are that some don't accept that responsibility evidently.
I am certain that some ENT's are just as guilty. But those who pay the price are you and me.
Now I am not sure if I should post this, considering what happened after my original post at the start of this thread :rolleyes:
But someone made a statement to me today, 'anything nasty in the mouth never hurts' Now I don't know enough to contradict this, BUT I feel that is a rash generalisation.
Sunshine.. love and hugs
Helen
Helen,
If you have a question you should post it, you want to know and on most issues someone has the answer.
I assume by "Nasty" this person was referring to OC. Unfortunatly, many people and even Dentists, MD's, ENT's etc. believe this and tell people this. Every body is different and every H&N and OC even though they may be similarly named, classified and have the same behavioural characteristics is different as well.
Remember, the terms "Never & Always", have little use in medicine and oncology.
Pain is not and has never been used, at least in any textbook, journal article or lecture I have attended, as a major indicator or clinically descriptive term to rule out any kind of H&N or OC. Pain is usually one of the last characteristics used in the long differential diagnostic lists to decide if something abnormal is "Nasty" and/or needs further investigation or biopsy. It usually appears last or next to last and goes something like this (I'm paraphrasing here),...Pain, not always but sometimes present in varying intensities in different patients. Pain may or may not be from the initial lesion and may or may not be present if the lesion has invaded other structures or tissues. Wow!! That's pretty vague.
I personally don't use the prescence or abscence of pain in my clinical decision making process regarding abnormalities in the head, neck, or oral cavity. I note it and query about it but that's about it.
I have personally been involved with SCC base of tongue in an elderly gentleman that was excruciatingly painful. He had complained of the problem for 18 months to his MD and dentist. His wife was my patient and asked me to have a look. I sparyed topical in the back of his throat and then examined him. When I pulled his tongue forward with my gauze I froze, there was a 2 cm round ulceration with indurated borders and tissue necrosis that crossed the midline. He had hard fixated submandibular nodes and cervical nodes. Similar lesions were present on both tonsillar pillars. I immediatly referred him on an emergency basis, he went right from my office, to a surgical ENT at our local Cancer Treatment Center. Unfortunately he passed away several week later from pneumonia brought on by the rigors of chemo and radiation.
Ok...Rambling...
Nasty things in the mouth can be painful.
I hope this answers your question.
Mike
Dr Mike
When I said I wasn't sure about posting the question it was a little tongue in cheek(excuse the pun) I have no wish to be the cause of more furore on this board.
I have a warped sense of humour, which sometimes does not come over in my posts.
Thank for you reply, that's what I thought, it was to much of a generalisation for me.
Sunshine.. love and hugs
Helen
Helen,
This is certainly not true as I can tell you that the lesion that I had on my tongue hurt. You are not the only one that has heard this and unfortunately it is a very misleading statement.
Jerry
My Dad's first symptoms were pain. He had his teeth cleaned and then the pain started. Initially he thought that the dentist had knocked some bacteria loose when he had his teeth cleaned and it had resulted in an infection. For three months he went to the dentist every two weeks, complaining of the increasing pain. The pain was also in the area where his partial plate touched. The dentist started cutting the plate down and even suggested that he not wear it until his mouth was better. Finally, a red, blistery rash appeared in his mouth. On that visit the dentist called an oral surgeon and dad left the dentists office and went straight way to the oral surgeons office and had a biopsy. The rest is history.
Dear P-girl....your dad's lesion began much as mine did, exc. when it presented itself as a lesion with, as you call it, "a red, blistery rash," my dentist did not recognize it. I realize that this is one, individual practitioner who was not properly educated and motivated to diagnose oral cancer, and that most are more alert than that. This was a young-ish dentist....not brand new, not elderly.....has young children, 6-10 yrs. old.....recently trained.....There is simply no excuse. It's a good thing I am not the suing type, because this is a clear case of "failure to diagnose," when a practioner does not perform within the reasonable expectation of his specialty. He allowed my clearly visible lesion to remain for over 8 months, not recognizing it even when it was classic, as you father's was. I had to insist on more attention, and then he reluctantly sent me to the periodontist....still not the right place to be......and that dr. sent me immediately to the oral surgeon for a biopsy.