I've had a sore on the lateral portion of my tongue for the past 4 months. It is on the opposite side from where the cancer was. I've been attributing the sore to rubbing my tongue against my teeth in the night when my mouth is excruciatingly dry. I've been doing constant saline rinses (every time I pass the bathroom) and started using one of those products you can buy over the counter - Soothe and Seal - to try to get this thing to heal up. My dentist and surgeon both saw this sore about two weeks after it first developed (I wasn't taking any chances and got right in when it wasn't healing). The dentist said at that visit that if it didn't heal in a month he wanted a biopsy. I went to the surgeon a few hours later, and he was remarkably uninterested and said that it didn't look like anything. I had CT scan about a month later, and got an all clear - and the surgeon again looked at the sore and was unexcited about it. Since then, the radiation oncologist has seen it, the speech therapist has seen it. They both noted that I had a "big ulceration," but gave no further comments.

I went back for my routine dental visit earlier this week, and the dentist immediately checked on the sore. He used the Velscope and spent a lot of time examining my mouth. He said that it "wasn't glowing red" and that it looked "white" and said again that if it hadn't healed in a month it "needed to come off." I asked if it could wait that long or if something should be done now, and he said that he "wasn't that excited by it" and thought it could wait for one more month to see if I could get it to heal before removing it.

I called my surgeon's office after knowing full well that he would be incredibly displeased if someone else did a biopsy and he wasn't involved. I mentioned that the sore had been seen many times over the past months, but we were now at 4 months since it appeared, it bleeds when I brush my teeth, it is getting more painful, and looks bigger to me. They made an appointment for me to have it looked at again, but unfortunately he is out of town on vacation all next week - so the 22nd is the earliest appointment. That's a long time to sit and wonder.

Needless to say - I'm a tad concerned. I'm encouraged that the dentist didn't seem to see any blaring signs of obvious cancer with the Velscope, but I don't know much about that technology - so I'm not sure how accurate a visual exam using it is. I'm also a bit concerned that if the surgeon decides to do a biopsy, and the reason we're doing the biopsy is because my mouth refuses to heal thanks to radiation damage, then how in the world will the biopsy site heal?

Any thoughts?! Anyone else out there have non healing sores that aren't cancer?!

It may be many things. But you know the drill here. If it has persisted this long I would want a piece of it under a microscope and a board certified pathologist to tell me EXACTLY what was going on with those cells.

If it is chronic irritation that will be revealed If it is a non healing would for some other reason then methodologies to induce healing should be instituted. I don't even want to use the recurrence word, but if it is something bad, of course you want to know as early as possible.

An eyeball exam is only as good as the experience of the person doing it, and even then it is certainly no absolute. The VELscope is a good device, but it is not specific for oral cancer. That it showed up white seems odd to me. Green is normal, dark is abnormal according to the lecturers and literature that I have read and images that I have seen. No one has said anything about white. The device is new to the market, and I have talked to tons of doctors that do not know how to interpret what it is showing them. It finds; trauma, cancer, fungal infections, bacterial and viral infections, and other oddities like Lichen Planus, heavily vascularized areas, heavily keritanized areas and more. It is a discovery device not a diagnostic device. It finds stuff and the clinician has to then determine what it has found.

In your shoes I would get a small biopsy, and I would really like you to see an oral medicine specialist if it turns out not to be cancer. They are usually found at dental schools, (there are only a few in private practice in the whole country) and they know the oddities of the zillion different things that go funny in your mouth better than most others.

Hi Brian,
Thanks for the reply - I'm anxious to find out what is up with these cells - I wish I wasn't having to wait nearly 2 weeks to do so.

I'm certainly not wanting to "borrow trouble" and know that "it isn't anything until the pathology report says it is something," but this whole non healing ulceration seems very familiar. Way too familiar.

Thanks for your input on the VELscope and the suggestion to see an oral medicine specialist if it isn't cancer. I would like to have some definitive answers and get this thing healed up one way or another! It is starting to get pretty painful...

Brian, having you available is like having an encyclopedia available at all times. You sure have studied this OC and know more about it than some prefessionals I have talked to. Keep up the good work and live forever for those that will follow us thru this Journey.

Lisa - a biopsy can be done by any oral surgeon on pretty short notice (this isn't really surgery of any extent) with the results sent to both the cutter and your existing doc by the pathologist. You have to look after you, not worry about his vacation or his feelings... after all, he is putting you second to his plans. He could have told you to call whomever is covering his patients while he is away and didn't.... what does that make you feel about his priorities? If for no other reason than to alleviate your concerns and fears he should have referred you to his associate. It shows his lack of concern for you. Take care of number one first, and let the hurt feelings sort themselves out later.

Jim. Thanks for the compliment, but you have to understand, I'm not the sharpest pencil in the cup for the most part. I am privileged to be asked to speak about the few things I do know at cancer conferences and university programs where, for the two days there, I lecture for an hour or two and LISTEN for all the other time. It is a 2-3 times a month free learning experience. Too cool - and they pay the foundation for my time to boot.

Hi Brian,
Just read your message and chuckled - I came to the same conclusion last night at around 9:30 pm when I was having to numb my tongue up with OTC benzocaine to get to sleep. I called my surgeon (who unfortunately doesn't have a partner and is crazy busy - he really needs to get one!). There is a world of difference when you speak to the doctor directly instead of letting the nursing staff relay messages back and forth. He told me to come first thing this morning and tell the staff that he said that I have to be fit in - even though they are already overbooked. He doesn't want this to wait for him to return and doesn't want anyone else but him to do a biopsy. I'm happier with that too - I like that MD Anderson's pathology department had my results last time in under 15 minutes.

So - I'm off to sit and wait in a waiting room all day - but at least this will be addressed!

Lisa,

The VELscope is used to find pre-cancerous lesions. Anything that is visible to the naked eye and doesn't heal in 2 weeks should be biopsied. I don't understnad why the biposy is being delayed and I suggest that you find someone that will do it and not worry about hurting anyone's feelings.

I am totally confused as to why your dentist would use the term "glowing red" as normal tissue looks green under the VELscope and abnormal tissue looks dark. In my experience, anything that appears red under the VELscope, is bacteria.

Jerry

Lisa,

It appears that you posted while I was typing mine.

I'm glad to hear that you are getting the biopsy done this morning.

You might want to consider having the dentist using the VELscope, read my post about color observations. I don't know how long he has been using it, but he might want to check with the literature about interpreting what he is seeing.

Good Luck

Jerry

I just received an image from a doctor that has a red spot on the VELscope image. It is indeed been identified as a bacterial infection, and right where you would suspect one to occur, right around the interdental papilla between two teeth. So I have learned something here about the device. Thank you Jerry for seconding this finding at NYU. By the by, the original posts says : "it was not glowing red, it was white" and that was what threw me off on the thinking about this. I can't count the calls I have gotten from doctors that have the device and are overwhelmed by all the things it finds, most of which are not cancer. This was a problem with the parent company LED, that sold the unit without a proper visual manual on what to look for with decent images of all the possibilities. I finally, in a call with them, told them that I wanted a consulting fee if I was going to take this many hours a week to talk to their accounts about things! These doctors couldn't even determine what a linia alba was..... Jeez was my confidence in general dentistry going down. Needless to say, they are hot on working on a manual that is comprehensive for users....

I'm back from the visit with the surgeon - thankfully they did manage to fit me in first thing this morning. I was the second patient of the day! Sure paid to be waiting on their steps when they opened. I did have to be pushy and insist that the doctor wanted to see me first thing - but that worked. I'm learning that I need to stop being so darned polite!

He was concerned about the ulceration and we got the biopsy done. The frozen section was negative and I'll now be waiting on the results from the fixed section. If it isn't cancer or dysplasia, he said it might be soft tissue necrosis. He told me not to get too excited about a negative result from the quick read - he said that he far prefers the results from the fixed pathology specimen and that the frozen reads are often inaccurate.

He didn't have much to say that was positive about the Velscope - doesn't sound like my dentist really knows what he is looking at with it. BUT - at least he conducted a thorough oral cancer screening exam and knew that something should be done about the ulceration in my mouth! I give him full credit for that.

I am very happy that you have taken this step. Now you will get a black and white answer, which will allow you to follow an appropriate course of resolution. Pushy is not always a bad thing. It's not their life that is in question here...... and too often people behave with that perspective.

Lisa,

One step at a time. I hope I come home from my vacation to read that it was nothing.

Brian is right. There is a lack of understanding about what the VELscope shows. There is a big learning curve. We have been using it since 2/2007. The first time I saw the bright red bacterial areas, I freaked out. Took some time to figure it out.

It's good that he is doing a thorough oral cancer screening. I wish more dentists and hygienists were doing them.

Good luck.

Jerry

Hi all,
I would have to say, Brian may think he's not the sharpest pencil in the cup, that said I would brand him more of a mechanical pencil with umlimited refills. You can always count on him and he never lets us down here.
I agree with the previous statements and have confirmed with LED dental that "red" is usually bacteria on the VELScope.
The VELScope, as I have stated many times, is just another tool in the tool box. It also comes with a big learning curve for the clinicians that use it. I, for one, will welcome a manual with pictures of VELScope findings even though I have been using it for almost a year and am quite comfortable with understanding what I see with it.
Brian, as far as I know, a Linea alba, should be easily recognizable. It saddens me to hear how some of my colleagues can't determine when they see one. All the tools in the world won't help these practitioners.

All the best,

Mike

The waiting for results is almost worse than the waiting to get in to have the biopsy! You'd think the pain from the biopsy would take away the worry and what ifs that keep flying through my head!

The biopsy site is healing very well - so I guess my hypothesis that maybe the non healing ulceration was due to radiation damage causing my tongue to be slow to heal might not have been a sound one. Sounded good at the time!

The doctor's office called yesterday and tried to schedule me for 8/5 to follow up on the biopsy results and check on healing of the biopsy site. Apparently they decided to unilaterally cancel my previously scheduled appointment for the 29th because "the doctor said he wanted to see you in two weeks." I pointed out that the doctor wanted to see me the first day he was back from vacation and that the 29th was actually 12 days out and the 5th was 19 days out. Clearly my appointment on the 29th was closer to the two weeks he had written in the chart. Geeze! I got ugly and impatient and told the clerical person that it was absolutely inappropriate to decide to cancel the appointment that I had scheduled without consulting me, and that I was not going to wait until August 5th to come in. She snottily told me that she'd have to "check" and call me back. After another call where she again tried to railroad me, I told her to go back and "check" again and call me back with my appointment on the 29th rescheduled. She called back about 5 minutes later and sheepishly told me that the appointment had been put back into the system.

I really love my doctor, but really hate dealing with the office. At least I was able to hold firm and insist that things be done the right way - I worry about all of the patients out there who aren't able to advocate for themselves or who don't know that they can or should.

Man do I love people that aren't afraid to speak their mind. LOL Good job at saying what you want and not what they want to hear. It isn't their life but yours so go for it and no holds barred.

You go, girl! You know what's right, and I'm proud of you for fighting for it!

XOX

I got the results back! It was NOT a return of the cancer! I had an infected abscess that was determined not to heal because of radiation damage. The surgeon removed all of the infected/necrotic tissue when he did the biopsy and the biopsy site is healing - a bit too slowly for my taste, but I'm now at day 15 post procedure and the site has mostly filled in. I'm being sent back to the prosthodontist to be fitted for a mouth guard to wear at night to try to help protect my tongue from further injury. Needless to say, I'm quite relieved!

Lisa
Congrats on the good news. Glad its not a recurrance.

Lisa,

I got my wish and came back to your good news.

Congratulations and I like the way you handled that SOB at your doctor's office. If any of my employees treated my patients that way, they would be out the door before they could even say "sorry".

Jerry

Lisa,
It's always nice to hear good news even though the treatment is so pleasant. Also thumbs up on how you handled the appointments.

Thanks guys! Life is to short to be polite anymore! My husband sure is enjoying the new, liberated, assertive version of me! (NOT!)