My name is Barbara Boland and one year ago I was diagnosed with stage 1 SCC of the tongue. I underwent a partial glossectomy and a modified neck dissection on 7/1/03. I was 41 at the time, never smoked and drank only socially. I am also a dental hygienist. I noticed the unusual tissue on my tongue and showed to a family member who is an ENT/head and neck surgeon. He said "it's nothing". A couple of dentists also said it was nothing. Finally after four months, a dentist performed a brush biopsy, which showed atypical cells. That was followed with a scalpel biopsy that confirmed the diagnosis. I can't help but feel that if I were not a hygienist I would not have been diagnosed until much later.

I have made it a goal of mine to eduate dental and medical professionals about the importance of early diagnosis of this horrible disease. I am going to be speaking to a group of about 100 dental professionals next month and I know that our stories can be powerful motivators for people who do not have experience with this disease.

What I am looking for are people who are willing to share the story of how your original diagnosis was made. Did you find the lesion yourself? Did a dentist or hygienist make the initial call? was your diagnosis and treatment delayed due to non-diagnosis or mis-diagnosis?

If you are willing to tell your story and will allow me to share it with dental professionals, please let me know.

Thanks in advance for your help.

Barb Boland

Hey Barb,
My husband, Dan, was diagnosed last July with SCC mobile left side tongue. He had a sore for approx. 2 months that wouldn't go away. We get cancer sores and just thought that was what it was this time, too. Unfortunately, he wasn't due for a dental checkup during that time. I don't know what they would have said. He finally went to a regular family doctor who said it was some kind of bacterial infection and put him on 2 weeks of antibiotics, then another 2 weeks of antibotics. Finally, after about 5 weeks he referred him to an ENT who looked and said it definitely was not cancer, wasn't sure what it was but decided to do a biopsy. Two weeks later he apologized and said it did come back cancer. We were referred to an oral surgeon who two weeks later scheduled Dan for partial glossectomy. We learned a big lesson by not going to any doctor sooner, but also was drug along for way too long before biopsy. Had it all happened sooner, he probably would have been Stage 1 and maybe, just maybe could have avoided the aggressive neck tumor that appeared just 4 months later. Also, oral surgeon never even suggested radiation for Dan as prevention since the FEW nodes he took were negative. Had I been on this board sooner, I would have known how important radiation would have been for his stage of tongue cancer even if there might not have been node involvement.

Hope this helps...feel free to ask anything else you might need to know from us.

Thanks,
Debbie

Barb:
I'm a caregiver, too. My guy was diagnosed in July 21, 2003. Though his cancer would/should not necessarily have been diagnosed by a dentist (I am the office manager for a dentist) it should have been diagnosed WAY sooner than it was.

Ed, over the course of about 7/8 months complained of swollen lymph nodes, sore throat, and persistent dry cough. We went to the family doctor a bunch of times, the allergist a bunch of times (everyone prescribed antibiotics), finally our accupuncturist looked him square in the eye and said - GET THIS BIOPSIED! He was the most serious of all professionals he went to see...

Ed went in for day surgery thinking that he'd get it removed and life would be good. When the doctor came out of surgery, he told me it was "the strangest thing" (we went to a plastic surgeon because of the location of the lump)... He was pretty graphic in his description, assured me he flushed the area with a "copious amount of saline" and took what he felt comfortable taking because of the "depth" of the mass.

This was a Thursday. On Monday, Ed came to work to pick me up and the doctor had already told him. Come to find out it was there so long and had done its cancer thing - what was biopsied was metastatic carcinoma with the primary site unknown...

Long and short of it. We got our butt in gear, stirred the pot to get all the doctors ready to roll and within 1 week we had MRI/PET scans and knew where the primary site was and 2 weeks after that he started treatment (chemo/radiation simultaneously).

Any and all doctors should be prepared to think beyond the mere shot and a couple of pills or a mere peek in your mouth. I appreciate your willingness to stand up and make them take notice. Our lives depend on their expertise!

Thanks for speaking out!

Susan

Here's the long and short of my story.

Last July-August, I noticed I had a lingering dull sore throat/ear ache. I figured my ear problems were just wax build-up or some sort of an infection. After they persisted, I went to my regular doctor. He poked around, saw nothing abnormal and then ordered me to have my thyroid checked. When that came back normal, he simply threw up his hands and said "I have no idea what's wrong with you!"

I'm not sure if the sore on my tongue was there at that point or not. But soon thereafter I noticed a nasty dime sized sore on the underside of my tongue on the left side. It hurt, and I figured a jagged tooth was rubbing the area raw. So I went to a dentist to get his opinion.

Fortunately for me, he took one look at the sore and said "get that thing checked out!" That was the first time I heard the C-word and of course I freaked. The oral surgeon specialist didn't biopsy it at first -- something we regret not pushing for now -- but put me on antibiotics because I didn't have any of the classic risk factors (smoking, drinking, chewing, etc.) When that didn't work, then he did the biopsy 10 days later, and of course a week after that the results came back as SCC. Fortunately, no lymph node involvement (though I'm currently going through tests and scans to see if this thing has come back in my nodes)...

I'm very thankful overall with the vigilence my doctors and dentists have had with me. Except for not giving my a biopsy right off the bat, they have been aggressive and very proactive in my case. Even now, as soon as something suspicious shows up, there are all over it.

The one thing I don't understand through all of this -- why do they have to make us wait so long to get biopsy results back? My most recent biopsy came back the next day thanks to a very bullheaded doctor (praise him), but my initial one took more than a week and most folks on these boards talk of the agony of waiting 7-10 days. Maybe they are overloaded with cases, but possible cancer diagnosis should move to the front of the line in my opinion. If nothing else, so we don't end up in the hospital with heart trouble as well... Just my .02 worth...

Eric

Barb,

There are several similarities between my case and yours (and some of the others above). Here goes:

1) Diagnosed in 1989 at age 39; nonsmoker, social drinker.
2) Found lesion myself (couldn't possibly miss it -- it was on the side of my tongue and getting larger and more painful).
3) Had various appointments with dentist, internist, and oral pathologist over MANY months, all of whom kept saying it couldn't be anything serious because I didn't have the typical risk factors.
4) Was referred to an oral surgeon, after previous doctors concluded it was "probably" a benign tumor; oral surgeon intended to remove it, but quickly determined it looked suspicious and performed a biopsy instead.
5) Oral surgeon referred case to oncologist, who engaged a tumor team based at Dana Farber Cancer Center in Boston; team concluded that partial glossectomy and neck dissection were necessary, followed by approximately 40 doses of radiation.

Thank God I've made it 15 years (and counting). I have regular checkups with my oncologist and oral surgeon, who continue to be vigilant about monitoring symptoms.

Cathy

Hi Barb, I will try to make this short. Early in December 2001, I felt my tongue cutting into a tooth in the back left side, went to my dentist who filed the tooth down, no improvement, put me on antibiotics in Feb. 2002, no change, sent me to oral surgeon in April 2002, did biopsy, came back negative for cancer, the sore got angrier and uglier, my dentist then referred me to another oral surgeon at the University of Md. Hospital, that was May 10th, he took one look at it and told me it was squamous cell carcinoma and had to come out. He operated May 28 2002, took about 1/2 of my tongue, replaced with arm flap, also did neck dissection, two lymph nodes positive for c, had 35 radiation treatments. I was 44 at time of diagnosis, non smoker, altho I had smoked for several years in my early 20's. Anything I can do to help, just let me know. Thanks, Carol

Oh you bet I am here if my story will help. This is my third time with cancer. The first time I alerted the dentist, which did not know what it was. The secomd time the dentist did find it, Thank you doc. I have not been to the dentist in some time, for I was told not to until we got this cancer some kind of control.. always vicki

My case is very similar to the survivors that have previously posted. I had been battling leukoplakia since I was 25. I noticed a white spot on the left lateral part of my tongue that wouldn't go away. I had it biopsied and it was severe epithilial dysplasia. Every 2-3 years I would have another spot in the same area until December 2002 when I had an ulcer that wouldn't heal. After trying some prescription mouth wash and after 4 weeks. I had it excised and it was SCC. It was very small and they did not believe radiation was necessary. Four months later I had a tumor in my tongue that was over 2 cm. The reoccurance was harder to detect because of all the surgeries. I thought it might be scar tissue because my tongue was stiff and less mobile than before. The CT of the head and neck showed a mass and then the needle biopsy was done and confirmed what the CT and PET showed.

That's my story. Early detection and persistance with physicians seems to pay off for most patients.

Lynn

Barb,
Here's my husband's story. Noticed lump on neck November 2002. Dentist thought it could be due to infected tooth and put him on antibiotics. No change so he went to our GP who thought it could be "cat scratch infection" (husband had no risk factors for oral cancer) and put him on different antibiotics. In December, he went to surgeon who biopsied lump and did CT scan. Biopsy came back negative and scan showed nothing but lump. Surgeon decided it was a branchial cyst - nothing to worry about but should be removed "within a month or two." Then I got on the internet to research branchial cysts and found, among other things, info that in people over 40, 80% of neck masses are cancer. I insisted he have lump removed immediately. Before surgery, that surgeon said he was sure it was nothing. An hour later he was telling me it was metastatic SCC. Neck dissection and tonsils out in January (primary was found in tonsil during surgery pathology). Radiation with chemo February and March.

I've heard from other patients that the dentist tells people that he was the one that discovered the cancer. Selective memory, I guess.

Anita

Barbara, I think what happened to me may be the kind of story you are asking for. At a regular dental checkup, the hygienist pointed out to the dentist a red spot in the back of my mouth where the wisdom tooth had been. He dismissed it as being from misaligned teeth. FOUR months later, I chanced to read a very small item in a magazine about oral cancer, something about which I had absolutely no knowledge. I took a flashlight to examine my mouth and surprise, surprise, the small red spot had become an ugly tumor, stage IV, but so far back that I never saw it when brushing and flossing. That was a little more than two years ago, and after surgery, rad and chemo, I am doing just fine, living life in the fast lane again. I can guess that if the dentist had recognize the red spot, I would have had far less treatment, but that is definitely water under the bridge now. I am glad that you are doing well. I applaud you for educating others!

Thanks to everyone for responding. My goal is to help these dental professionals realize that they have an obligation to be more aggressive when it comes to abnormal tissue. We are lucky that there are some non-invasive ways (brush biopsy, Vizilite) to at least find out if the cells are abnormal. I want something good to come from my experience with cancer and if one person gets diagnosed early rather than late, that is a good thing.

Thanks again, Barb

Barb,
I have been to dentists who feel the neck for nodes at regular checkups, but that did not happen in my case. Mine was base of tongue, so it was not visible, but it grew to Stage IV before anyone got concerned. I had a dry, scratchy throat for many months, and began having pain in my gum. I started at the dentist, who sent me to the endodontist who sent me to the periodontist. The periodontist did a gum procedure that did not work and thus sent me back to the endodontist to redo an old root canal. When he opened up the tooth, it was fine.

Due to the persistent dry throat, I did ask the periodontist to attempt to look down my throat with his mirror, but my gag reflex did not allow him to see anything. I even went to my radiologist buddy who also tried unsuccessfully to look there. When you are relatively young and healthy, everyone just assumes that you have an allergy.

My tumor was not found until food that I swallowed began coming back up and I went to an ENT who had me do a barium swallow with the radiologist, which revealed something, and followed it up by scoping me, revealing a big tumor.

I cannot really blame the dental professionals since it was not visible in my mouth, but, had they been better trained in feeling around the neck, they might have been able to detect the nodes.

So my thoughts are that it should be emphasized to the dentists to feel around the neck as well as to look in the mouth.

Danny G.

My stage IV cancer was found after the dentist removed two teeth on the lower left side of my mouth in Dec. of 2002. The two teeth that were the farthest back in my mouth. Nothing was noticed during the exam nor during the extraction. I do remember it being horribly painful after the extractions but after a few days that went away. The area where the teeth were removed never really healed, it stayed very red and "angry" looking. I was so very busy at this time of my life, we had just opened our second gym and was managing two businesses and taking care of the four kids we still have living at home........throw in a husband and a house and not much time left to take care of me. I would look at it off and on but just didn't think about it to much. The middle of March 2003 I called the dentist for something not related to me and ended up telling the office girl about my problem. She had me come in that next day. I will never forget the look on the dentists face when he looked in my mouth. He asked me if I had been putting aspirin on it, that the area looked burned. He took an X-ray and sent me to an oral surgeon. The oral surgeon, that I saw that same day, told me I had an infection and put me on antibiotics. I asked him if he thought this was cancer and he said no. The two teeth next to where I had the extractions in Dec. had become sore and loose so he scheduled me to come in and have them taken out four days later. During those extractions he did a biopsy. The extraction for those two teeth was so damn painful, the novacaine just didn't numb it enough. I remember being shaky and very distraught after that appointment. The biopsy was on a Tuesday and that Friday we left for Myrtle Beach with the kids. When we got to the motel room that night I looked at the area and saw that, after 3 days, the white stuff had grown back. That is when I started to fear that I had cancer. I went straight to bed after that, and the movie "Step-mother" was on which of course upset me even more. We returned home on Monday night and that next morning, when I was coming down the stairs, my daughter hollered, "mom, your dentist called yesterday." I knew right then that I had cancer, as I had an appointment for Thursday for the biopsy results and I knew they would only call early if there was a problem.
I went in that afternoon and my world as I knew it was over. Thanks be to God that he allows us to create new worlds!
Once we get past grieving our pre-cancer selfs, life can be good once again!!

My husband's oral cancers were both spotted first by his hygienist during routine cleaning. The first time it was after two medical doctors had said the soreness in the back of his mouth was nothing. The second time he had just had a going over by his surgeon to look for a recurrence 5 days before. It is just so important for the dental professionals to look at more than the teeth. Anything out of the ordinary deserves a biopsy.
Lowanne