Sunday, September 30, 2007

Oral Cancer

I thought it was about time I wrote about this subject – since I am an oral cancer survivor. Two and a half years ago, I was diagnosed with, of all things, tongue cancer. I didn’t even really know there was such a thing until it happened to me.

As a hypochondriac, I feel I have always done a really good job of making sure to worry about all of the diseases and conditions with which I was likely – or not so likely - to be diagnosed.

I worried about breast cancer, cervical cancer, AIDS, Chronic Fatigue Syndrome (bingo, had that), brain tumors, aneurysms, and more. But never had I even remotely worried about tongue cancer.

And wouldn’t you know it, that was what I got? It just goes to show, you must constantly search for new, more obscure diseases to worry about, or else one will pop up that you hadn’t thought of. (I like to call it “preventive worrying.” If you worry about it, it won’t happen.)

So, here is my story.

In late January of 2005, I noticed a sore spot on the side of my tongue that was annoying me. At first glance I didn’t see anything, so I didn’t worry much. But it kept bothering me. Finally one day I carefully examined the side of my tongue with my glasses off (being highly nearsighted, this is as good as using a magnifying glass), and saw a tiny little indentation, like a canker sore when it first starts. Relieved, I started rinsing with Amosan, thinking it would be gone in a few days.

I had recently been under a lot of stress - my father had just died - and I figured that it wasn’t unusual to get a canker sore after that.

But about a week later it was still there, and it looked about the same, maybe a little whiter. I had a dentist appointment for a checkup and while I was there I asked him about it. He didn’t seem too worried, but said if it didn’t go away he’d send me to an oral surgeon.

I was back the next week for a filling and when I told him the tiny spot was still there, he gave me the name and phone number of a nearby oral surgeon.

The doctor was able to see me on March 4. When I went, the lesion was so tiny he couldn’t even see it until I pointed it out to him. A shot of Novocain, a quick cut, a few stitches, and it was gone.

In the meantime, I had done all kinds of Internet research on tongue cancer, and had discovered to my dismay that tongue cancer was not a laughing matter. It only had an overall survival rate of around 80% even in early stages, and did not respond all that well to chemotherapy. So I was glad to have gotten rid of this thing. I assumed I was being my usual hypochondriacal self and that it would turn out to be nothing.

Four days later I was supposed to go back to the surgeon to make sure the tongue was healing properly. It was snowing that afternoon, the tongue felt fine, and I figured maybe it wasn’t so important to go back. I called up and asked if I really had to go, given the weather. I was somewhat surprised when the nurse told me the doctor still wanted to see me.

When I arrived, the doctor invited me into his office rather than the examining room, and that’s when I realized something was amiss. He informed me the biopsy had come back as cancer.

To make a long story shorter, I didn’t mess around – I went to a surgeon at Memorial Sloan-Kettering who was recommended by my husband’s dentist, and on April 1 (no fooling), he took an additional chunk off the side of my tongue to make sure all of the cancer was gone.

By this time I had also consulted an oncologist at Hackensack University Medical Center’s Cancer Center, who had sent me for an MRI and a CT scan, and done blood work, to ensure that the cancer hadn’t spread anywhere. (The surgeon at Sloan-Kettering had not sent me to an oncologist for additional screening, but I figured better safe than sorry - I always hedge my bets. So I found my own).

I had also had the original biopsy sent to Sloan-Kettering at their request, where they did a more thorough examination that determined the depth of invasion by the lesion was less than a millimeter – barely a cancer at all. So by this time I was feeling better about my prognosis.

The results of the surgery showed that the original biopsy had actually gotten all of the cancer, and the surgeon told me I needed no further treatment; just needed follow-up examinations with him every 3 months.

Now it’s been 2-1/2 years and thankfully, no new cancers have popped up, nor have I had any spread of the original one. I am very lucky that I am a hypochondriac and didn’t wait too long to get the lesion taken off.

Sadly, that doesn’t always happen for everyone. There was recently a story in the Wall Street Journal about a young 33-year-old chef who was diagnosed with Stage IV tongue cancer. He had had a similar experience to mine, but his dentist just gave him a mouth guard to wear at night, saying he must be unconsciously biting on his tongue, and the young man ignored the continued pain until it got so bad a year or so later that he had lost 10 lbs. and could hardly eat. He is currently undergoing radiation and chemo in hopes of not losing his tongue – or his life.

So, with that introduction, I will now get into the details of what oral cancer is, what can cause it, what the treatments are, and whether you will get it.

What Is Oral Cancer?

Oral cancer is a group of cancers affecting the mouth. It is part of a larger group of cancers known as “Head and Neck Cancers.” This article will concentrate on cancers of the mouth, specifically, the palate, gums, tongue and lips. Locations where oral cancer is commonly found are:

- the lining inside the lips and cheeks (buccal mucosa)
- the floor of the mouth (under the tongue)
- the top of the mouth (hard palate)
- the small area behind the wisdom teeth

The most common type of oral cancer is the type I had – squamous cell carcinoma. Over 90% of oral cancers are of this type. It arises in the skin cells, and can also occur on other parts of the body.

According to the Merck Manual, about 40% of squamous cell carcinomas begin on the floor of the mouth or on the side or bottom of the tongue, like mine did, and another 40% occur on the lower lip. The rest of them start on the roof of the mouth or the tonsils.

Another type of cancer is called verrucous (warty) carcinoma, which appears as a white grooved surface on the lining of the mouth. This type of cancer rarely metastasizes (spreads to other parts of the body) and is considered to be of a low grade of malignancy. It makes up only about 5% of oral cancers.

Cancer can also arise in the salivary glands, but this is relatively rare. In addition, melanoma and Kaposi's sarcoma (an unusual cancer that is more common among AIDs patients) can also occur in the mouth.

What Are the Symptoms of Oral Cancer?

Oral cancer often starts as mine did, with a sore place or little ulcer that looks like a canker sore. However, not all of them cause pain, which explains why a lot of oral cancers may not be found until they have already progressed. An oral cancer can begin with any of the following symptoms:

Common symptoms or warnings of oral cancer can include:

- Patches inside your mouth or on your lips that are white, a mixture of red and white, or red
- White patches (leukoplakia) are the most common. White patches sometimes become malignant.
- Mixed red and white patches (erythroleukoplakia) are more likely than white patches to become malignant.
- Red patches (erythroplakia) are brightly colored, smooth areas that often become malignant.
- A sore on your lip or in your mouth that won't heal (which is what I had)
- Bleeding in your mouth
- Loose teeth
- Difficulty or pain when swallowing
- Difficulty wearing dentures
- A lump in your neck
- An earache

The earache is particularly of interest - it is called referred pain, when the pain that happens isn't where the problem lies. I had a pain like this toward the back of my jaw for ages before my cancer was diagnosed, and thought it was just a pain in my jaw from my mismatched bite. I also thought the very back of my tongue was rubbing on something. Turned out that it all came from the side of my tongue where the tiny ulcer eventually appeared, which was fairly close to the front of my tongue. Once it was removed, all pain left. So if you have some kind of pain in your mouth and can't put your finger on it - literally - explore different areas than you think it is; it may be referred pain.

So, say you get some weird symptom in your mouth. Before panicking, you may ask yourself "Could it be anything else besides a life-threatening cancer?" because otherwise you may go into a full-scale hypochondriacal panic attack. The answer is, yes, there are a lot of other types of growths that can occur in the mouth that are totally benign, such as:

Fibroma: a benign tumor consisting of fibrous connective tissues:

Keratoacanthoma : a flesh-colored, fast-growing bump on the skin with a keratin plug in the center (keratin, the main component of the external layer of skin, hair, and nails, is a tough substance);

Leiomyoma: a tumor of the smooth muscle, often found in the esophagus, small intestine, uterus, or stomach;

Lipoma : a tumor made up of mature fat cells;

Neurofibroma: a fibrous tumor consisting of nerve tissue;

Papilloma: a tumor that resembles a wart, growing on the epithelium (the cells that form the skin and mucous membranes);

Pyogenic granuloma: a small, round bump that often has an ulcerated surface;

Rhabdomyoma: a striated-muscle tumor that may appear on the tongue, pharynx, uterus, vagina, or heart;

Schwannoma: a single tumor that grows in the neurilemma (Schwann's sheath) of nerves; or

Verruca form xanthoma: wart-shaped tumors

If you see any kind of unusual symptom in your mouth that doesn't go away after a week or so, go to your dentist for an exam. If the symptom does not resolve within another week or so, even if your dentist does not seem concerned, don't ignore it. Make sure to get a biopsy or other definitive test to rule out cancer.

What Causes Oral Cancer?

Oral cancer has a number of risk factors. It is highly associated with smoking and is more common in older people – hence, when I told my regular doctor that I had tongue cancer, she said in surprise, “But you’re not an older man who smokes!”

Tobacco use (either smoking or chewing tobacco) is by far the biggest risk factor for oral cancer. However, alcohol use is another independent factor that can lead to oral cancer; naturally, more use is more risk. Combining alcohol with tobacco is even more risky.

Constant irritation from dentures or a sharp tooth can also be a factor, as can overexposure to sun (for lip cancer). In some cases poor oral hygiene can be a cause, although this isn't that common in our modern society.

Although as a precaution I stopped drinking alcohol after my diagnosis, I had also had a sharp tooth that may have been rubbing on my tongue. I've since had the dentist file it down. I will never know if that was the cause, or the alcohol consumption - or perhaps a combination of both.

I miss my wine - I had my last drink on St. Patrick’s Day 2005. A nice glass of Chardonnay. Kendall Jackson. I can still taste it. It’s ironic, too, because red wine was usually my wine of choice. And I loved Guinness, so I don’t really know why I had that Chardonnay on St. Patrick’s Day. But that was what it was. And I don't dare take it up again, given that people who have had one oral cancer are at high risk for another. There's no sense in doing something that is known to increase that risk.

Although oral cancer tends to be more common in men, in recent years women and younger people have been showing up with this cancer more frequently. Viruses such as the human papilloma virus (the same one that causes cervical cancer) may be a cause as well, which may account for more cases in younger non-smokers, according to the Oral Cancer Foundation.

At any rate, just because you may not fit into the typical oral cancer profile, don't assume you don't have it and make sure to get checked regularly for any abnormalities when you go to the dentist.

How Is Oral Cancer Diagnosed?

To diagnosis oral cancer, in addition to a complete medical history and physical examination, your dentist may send you for a biopsy, wherein tissue samples are removed (with a needle or during surgery) for examination under a microscope; this is the most definitive method, and the one that diagnosed my cancer.

There are some new methods of highlighting abnormal areas in the mouth that some dentists are now using as an overall screening method, wherein the patient rinses with a solution that causes unusual areas to show up under a special light.

Sometimes a brush can be used on a suspicious patch of tissue to obtain cells for further examination.

If cancer is diagnosed, the following methods may be used to ascertain whether it has spread, or how deep it may be:

Computed tomography (CT or CAT scan) - uses radiation to obtain a very detailed view of tissues that do not show up on an ordinary X-ray;

Ultrasonography - a diagnostic imaging technique which uses high-frequency sound waves to create an image;

Magnetic resonance imaging (MRI) - another non-invasive procedure that produces views of an internal organ or structure, and is especially useful to observe the brain and spinal cord.

Your doctor or dentist may also recommend fiberoptic examination of the throat and palate to ensure you don't have other lesions that are not visible through a regular oral exam.

There are a number of other methods to determine the stage of the cancer; see this link for more information:

There are four stages of oral cancer, as described on the Oral Cancer Foundation website:

Stage I

The cancer is less than 2 centimeters in size (about 1 inch), and has not spread to lymph nodes in the area (lymph nodes are small almond shaped structures that are found throughout the body which produce and store infection-fighting cells).

Stage II

The cancer is more than 2 centimeters in size, but less than 4 centimeters (less than 2 inches), and has not spread to lymph nodes in the area.

Stage III

Either of the following may be true: The cancer is more than 4 centimeters in size. The cancer is any size but has spread to only one lymph node on the same side of the neck as the cancer. The lymph node that contains cancer measures no more than 3 centimeters (just over one inch).

Stage IV

Any of the following may be true: The cancer has spread to tissues around the lip and oral cavity. The lymph nodes in the area may or may not contain cancer. The cancer is any size and has spread to more than one lymph node on the same side of the neck as the cancer, to lymph nodes on one or both sides of the neck, or to any lymph node that measures more than 6 centimeters (over 2 inches). The cancer has spread to other parts of the body.


Recurrent disease means that the cancer has come back (recurred) after it has been treated. It may come back in the lip and oral cavity or in another part of the body.

There are also different "grades" of cancer, which mean differences in how aggressive the cancer may be. See the Oral Cancer Foundation site for more information on this.

Depending on what stage and grade the cancer is, there are a number of available treatments.

How Is Oral Cancer Treated?

For very early cancers, surgery is the first best choice for a full cure. However, for more advanced cancers, or those in a spot where surgery would cause a decrease in quality of life (affecting speech or taste), radiation can be a viable alternative. Here is a basic listing of the various treatments available, according to this source:


Different surgery techniques are used to remove specific types of oral tumors, including:

-Primary tumor resection - removal of the entire tumor and surrounding area of tissue

-Mandible resection -removal of all or part of the jawbone
maxillectomy - removal of the tumor, including part or all of the hard palate (roof of the mouth), if bone is involved

-Mohs' micrographic surgery - removal of the tumor in "slices" to minimize amount of normal tissue removed (may be considered when the cancer involves the lip)

-Laryngectomy - removal of a large tumor of the tongue or oropharynx, which may involve removing the larynx (voice box)

-Neck dissection - if cancer has spread to the lymph nodes in the neck, these lymph nodes may need to be removed as well.

Radiation therapy

This is a treatment that uses high-energy rays that damage cancer cells and halts the spread of cancer. Radiation therapy is very localized, aimed at only the area where the cancer is present. Radiation therapy may be administered externally with a machine, or internally with radioactive materials.


Chemotherapy uses medications that kill cancer cells. Chemotherapy has the ability to interfere with the cancer cell's replication. Chemotherapy may be used in combination with surgery and radiation therapy.

The following more detailed listing of treatments is exerpted from this link:

Most centers advocate surgical excision for early-stage primary disease of the lip, floor of mouth, oral tongue, alveolar ridge, retromolar trigone, hard palate, or buccal mucosa. The CO laser may also be used as a cutting tool in removing oral cavity cancers. In addition, this laser may be useful in removing dysplastic lesions without scarring the area significantly. However, clinicians must still observe the patient closely after the lesions are removed, as there is a significant likelihood of recurrence.

Although radiotherapy [radiation] may work as well as surgery for early malignant lesions in several of these subsites, such as the floor of mouth, concern about complication rates has made surgery the choice for most of these lesions. However, more advanced primary tumors in any of these sites typically require a combination of surgery and radiotherapy. Advanced primary tumors adjacent to the mandible may require a rim mandibulectomy, and those tumors that frankly invade the mandible are treated with a segmental mandibulectomy. The plan for surgical resection must also include reconstructive options; reconstructive teams composed of head and neck surgeons, oral surgeons, and prosthodontists are most successful at achieving the best functional and cosmetic result.

Most radiotherapy for carcinoma of the oral cavity uses an interstitial implant either alone or combined with external beam. For carcinoma of the oral tongue and buccal mucosa, the results of an interstitial implant alone or combined with external beam radiotherapy are generally better than those achieved with external beam radiotherapy alone.

Recurrence rates vary by primary site and increase with increasing primary stage.

Because the effects of treatment may cause disfigurement and other difficult side effects, there is often a need for follow-up surgeries, prostheses to replace missing tissue, and other therapies. Support groups can be helpful for those trying to cope with these issues. When getting radiation treatment be sure to ask many questions ahead of time, as there are now drugs and other preventive measures that can be taken to minimize some of these effects (such as protecting the salivary glands from damage, which will help preserve the ability to produce saliva).

What Is The Prognosis?

(exerpted from above link, continued)

For lesions on the floor of the mouth, 5-year cause-specific survival rates by stage are as follows: I: 90%, II: 80%, III: 70%, favorable IV: 40-50%, and unfavorable IV: 20%.

Five-year cause-specific survival rates for oral tongue cancers by stage approximate the following: I and II: 70-80%, III: 40%, and IV: 15­-20%.

These rates vary depending on where the patient is treated and how early the cancer was. My surgeon at Sloan-Kettering told me my chances of survival were above 90%.

If you are diagnosed with an oral cancer, be sure to get at least two opinions before embarking on your treatment. Some doctors prefer surgery, some recommend radiation, and you will need to understand the pros and cons of both.

I would also recommend, no matter where you live or end up actually having your treatment, be sure to at least have a consultation at a major cancer center such as Memorial Sloan-Kettering or M.D. Anderson (Texas). As Sloan-Kettering's motto goes, "Where you are treated first can make all the difference."

Will You Get It?

The odds are against it. Mouth cancer in general struck a little over 10,000 people in the United States in 2004, which are odds of about 1 in 26,000. Tongue cancer was even rarer, 1 in 37,000, or just over 7,000 cases in the U.S. that year. Other sources cite slightly different statistics, but they all confirm that oral cancer, particularly tongue cancer, is a relatively rare cancer. (I was one of the "lucky" ones I guess - why can't I hit those odds when I'm playing the lottery?)

While there are some experiments being done to identify preventive measures for oral cancer, so far the most important thing you can do to prevent this condition is to eat lots and lots of fruits and vegetables. And a recent study found avocados in particular may be helpful.

In conclusion, remember, just because the odds are against you having oral cancer, don't be complacent about it if you notice anything amiss in your mouth. Go to your dentist, and don't take any chances if something isn't going away, no matter what reassurances you may get. You only have one life to live and when early diagnosis is so important, time is of the essence.

The following links were sources for this information and can provide many more details than were included above.

Monday, September 24, 2007

What If Your Doctor Is Wrong?

CNN had an interesting, albeit concerning, article regarding misdiagnoses – which apparently happen all too often.

As a hypochondriac, you are probably used to being told “Don’t worry, there’s nothing seriously wrong with you.” But if you are really worried about symptoms you are having, don’t take no for an answer. Your doctor could be missing something. If the doctor you are currently going to doesn’t listen to your symptoms or take them seriously, go somewhere else.

By the same token, you may be all too ready to believe it if a doctor tells you that you have a serious illness. But if something tells you that it’s not likely that you have whatever it is he or she has diagnosed, then again, seek another opinion.

You are the best judge of how you feel; if there is something about your health that is making you uneasy, don’t rest until you figure it out.

This article has some alarming case studies. How would you like being told you had a rare form of lymphoma, but it turned out to be a benign fatty tumor?

The article has some good advice for all of us to follow when it comes to diagnoses, including the following recommendations (my comments in blue):

Here, from from medical experts, are some red flags -- five reasons for suspecting your doctor might have made the wrong diagnosis.

1. You don't get better with treatment

Sometimes doctors stick to a diagnosis even when multiple treatments aren't working.
As vice president for loss prevention and patient safety at Harvard's Risk Management Foundation, Bob Hanscom remembers one particular lawsuit against Harvard doctors.

A young woman complained of stomach and chest pain. Her doctor prescribed a medicine for gastric reflux. When it didn't work, a second doctor prescribed another drug for gastric reflux. It also didn't work. The woman ended up in the emergency room with acute pancreatitis, which eventually caused kidney failure.

She survived but will be on dialysis the rest of her life.

So, if your doctor has prescribed something for you that usually works on a condition within a certain amount of time, be sure to do some research on your symptoms and see if they could be caused by something else, and bring this to the doctor’s attention rather than blindly continuing to accept medications for the same condition as you continue farther down the wrong diagnostic path.

2. Your symptoms don't match your diagnosis

This is where the Internet comes in. You don't have to be a medical professional to Google your diagnosis.

For example, let's say a doctor diagnoses you with tendinitis. Looking it up, you can find out it usually lasts about six to 12 weeks, according to Dr. Saul Weingart, an internist and vice president for patient safety at Dana-Farber Cancer Institute in Boston, Massachusetts.

If you're still in pain beyond that time, the doctor may have made the wrong diagnosis.

By the same token, if you Google your symptoms and find they don’t really match what has been diagnosed, but are a closer match with something else, again, bring it to your doctor’s attention. If you have the right doctor, he or she will not be offended by your suggestions or your research. If they are, then find another doctor.

3. Your diagnosis is based purely on a lab test

The reality is that labs make mistakes. In Torrey's case, she says two labs made mistakes. When lab results are the sole criteria for a diagnosis, that can be a red flag, says Torrey, who works as a patient advocate. Another red flag is when a diagnosis of a rare disease comes from a lab that doesn't specialize in that disease, Weingart says.

Recently my husband and I had our annual blood tests, which required fasting beforehand. When we got our results back, we found that the lab had mislabeled our condition as being non-fasting, so all of the comparison ranges were for non-fasting values. This could have resulted in our cholesterol and blood sugar readings being incorrectly diagnosed as being normal when they may have been too high. (Luckily that was not the case when we checked into it).

Other tests can also be mixed up. I once had a misdiagnosis of severe heart failure based on a routine EKG that was run in my doctor’s office when I had complained of occasional palpitations. The doctor called me and told me he wanted me to take it easy over the weekend and not do anything strenuous, and that he’d want to put me in the hospital for tests on Monday. He later called back and apologized, saying my EKG had gotten mixed up with that of an elderly patient with an aortic aneurysm.

Again, this was an example of symptoms not matching the condition. Other than my minor palpitations (which turned out to be nothing to worry about), I had no symptoms of heart failure that would have matched the sobering diagnosis suggested by the EKG. Luckily my doctor was equally puzzled by this discrepancy, which made him double check the results – but not soon enough to avoid scaring the bejeesus out of me and my husband!

4. Your doctor attributes common complaints to an uncommon ailment

Torrey says her doctor said her night sweats and hot flashes were caused by the extremely rare lymphoma. Actually, they were signs of menopause.

Can you imagine? Quite a big mistake there!

Obviously this doctor did not remember the old adage that is told to medical students: “If you hear hoof beats, think horses, not zebras.”

5. Your diagnosis usually involves a test you never received

This is where the Internet comes in handy again. If you find out a specific test can determine the diagnosis you've been given, but you were never given that test, that's a reason to head back to the doctor's office armed with questions.

Another thing to be wary of is going by the results of just one test, if a disease or condition is more accurately diagnosed with more than one. Lyme disease is a good example; a simple antibody test might show up positive, but a more extensive type of test is needed to more definitively diagnose the disease. And even then there is potential for misdiagnosis.

So there you have it. While you shouldn't go by the motto of the old X-Files TV show, "Trust no one," at least follow the other old adage, "Trust, but verify."