Stories of survivors: 5 must-read reasons why oral cancer detection is critical

When will we get it right? When will dentistry be more proactive in the screening and diagnosis of oral cancer? When will we remember that dysplastic tissues quite often become cancerous? When will we see oral cancer walks in all 50 states to raise awareness? If not now, when?

When will we get it right? When will dentistry be more proactive in the screening and diagnosis of oral cancer? When will we remember that dysplastic tissues quite often become cancerous? When will we see oral cancer walks in all 50 states to raise awareness? If not now, when?

We live in a world with amazing technology at our fingertips, yet most oral cancer is not diagnosed until it is at least stage III. As dental professionals, we are well-educated oral healthcare providers who should be doing head and neck exams on every patient and thorough intraoral exams as well. If you are not doing them, what is keeping you from it? Time? How much time does it take to save a life? Does your office use fluorescent technology to help find abnormal oral tissues? If not, again, why not? It is not new technology.

Related reading: The importance of oral cancer screening in the dental practice

I have reached out to patients all across the country. Many are not comfortable sharing their story, because it is horrific and they do not want to think about it ever again. Those who have shared are very brave and my heart goes out to each one of them. I have spent several months gathering information and talking with oral cancer survivors. Their experiences have made me angry and sad. They have made me cry and think. The journey these folks have been on is not one I would every wish on anyone, yet it is one I want us, as oral healthcare providers, to see, so we understand and can be more proactive in early diagnosis.

Some of the survivors who shared their journey with me had not been regular dental patients, while others had. Granted, we can’t find it if they are not in our offices, but we should be reaching out and not only participating in oral cancer run/walks, but also be involved in community health fairs. Public education is going to make a huge difference in saving lives. We encourage our patients to get screened for many other types of cancer, yet we fail to be proactive in diagnosing oral cancer. Why is that? We can – and must – encourage screenings at every dental appointment.

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It is your job to be thorough and provide education about oral cancer. Buy a device that uses fluorescent technology to look for abnormal tissue. Fluorescent technology is not new; it has been in dentistry for more than 10 years. I am aware of three devices on the market today: Velscope, Identifi and OralID. I have used all three and have a personal preference due to ease of use and cost. One of the three does not have any disposables and the patient does not have to rinse with anything, making it the most cost-effective and easiest one to use. Just remember these are screening devices. They do not diagnose. A biopsy must be done. You might also need to be forceful with your oral surgeon about the biopsy. I have received several accounts of oral surgeons telling the patient it is nothing when it really was something.

Grab some tissues and read the following accounts from the oral cancer survivors I have been in contact with. When you are done reading, take a vow to make a difference in your practice and in your community.



Patient #1

Patient #1 was a male who had regular six-month hygiene appointments. He had never had a cavity prior to his oral cancer diagnosis and treatment. It began as a lesion on the lateral border of the tongue, one of the most common places. He had recently started wearing a night guard and thought it was just rubbing his tongue. He was diagnosed at stage II but the cancer progressed to stage III before treatment started. He was referred to a specialist at the University of Washington Medical Center in the otolaryngology department.

Related reading: The top 5 reasons to really think about oral cancer

A tumor board at the university outlined two courses of treatment and gave the patient his choice. The first option was surgery with small amount of radiation; the second was chemo and radiation. He opted for the non-surgical route. Remember this patient had never had a cavity in his life up to this point. He was never told it was important to get back to his general dental office for care. He had more than 30 cavities during the first two years after treatment. This patient also had a reoccurrence six months after completing radiation therapy.

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To date, he has had four surgeries, including a mandibulectomy with fibula free flap. When asked how his life has changed, he responded that, after surgery, he used to dream about eating a hamburger or a sandwich. He can only eat moist, soft foods, which makes dining out very difficult. He also can’t enjoy spicy foods, because of the side effects of radiation. He also can’t kiss his wife the way he once did. If he could go back and change anything, he stated he would have had surgery the first time and less radiation, and he would have gone to see his dentist right after his treatment was completed. He now brushes with high fluoride toothpaste and uses several oral hygiene aids.



Patient #2

Patient #2 is a female who, in 2008, was asked by her dentist how long she’d had a sore on the side of her tongue. She replied, “About four years.” The oral surgeon took a small biopsy and sent if off to the pathology lab. When she returned to his office, she was told it was nothing and not to worry about it. She received a copy of the pathology report but could not understand the results, so she took the surgeon at his word and did not worry about it.

Four years later, in 2011, she changed dental offices and was asked the same question about the lesion. He sent her for another biopsy. The look on the surgeon’s face when he took the biopsy clearly said this was indeed something to worry about. She was referred to another oral surgeon who took a more extensive biopsy, and confirmed the diagnosis of SCC (squamous cell carcinoma). At that time it was stage I, but she was told that the surgery would involve a skin graft from her thigh to be added to her tongue once the cancer was removed.

Related reading: Common misconceptions about oral cancer prevention

She had surgery at Swedish Cancer Institute, a partial resection of her tongue and 18 lymph nodes removed. No graft, but one lymph node came back positive for cancer. She had no idea what to expect during recovery, but feels very fortunate to have had family who blended her food and kept her pain under control. An oncologist called about a week after surgery to recommend radiation therapy since a lymph node came back positive. She was told the side effects were pretty minimal and she might just have some skin that would look older than she really is.

“Getting fit for the radiation mask was very painful. PET scans were fine, but lots of needles were stuck into my arm,” she said. Her first few treatments seemed fine, but then after a few more, her mouth was on fire and her neck was burned, bubbled and scabbed over. It was incredibly painful to eat or drink. Then her salivary glands went into overdrive and she could not stop spitting. She was forced to carry a spit cup with her everywhere for about a month.

She was often dehydrated and needed IVs. She was told to drink protein, but no specific type nutritional advice was given. Liquids were the only thing she could get down for a long time.

When asked how oral cancer has affected her life, she responded that every aspect of her life has been affected. She is a teacher, and it is often difficult for her to talk all day, and her speech slurs when she is tired. When she yawns, it feels like her throat is closing up. She has neck spasms with ear and jaw pain.This lady did not smoke and had three negative HPV tests. They do not know what caused her oral cancer.



Patient #3

 A male, Bill, who was not a regular dental patient, was first diagnosed in 1980 with a tumor the right side of his mandible. He had surgery and radiation from “cheek bone to breastbone.” During the same year, a tumor was found in a neck lymph node and radical neck surgery was performed.

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25 years later, while investigating why a thrush infection was resisting treatment, a lesion was detected in his right cheek. He had surgery in January 2014, but in July 2015, a lesion was discovered under the right side of his tongue. Due to a history of periodontal disease and bone loss, he was not a good candidate for maxillary implants, but does have some in the mandible. When asked if he felt he received good nutritional information, he said in hindsight, it was maybe 50/50.

Related reading: Oral cancer from a survivor's perspective [VIDEO]

Bill stated that he felt like he recovered quickly from the first surgery and radiation back in 1980, returning to work as a technical writer at Boeing until his retirement at age 64. After the 2014 surgery, eating became a challenge, as choking was a big issue. Rehab exercises to his atrophied muscles resulted in neck spasms that limited his ability to rehab and increase his opening abilities. Today, he chops or purees all his meals. He also relies on supplements to try and rebuild his body and gain weight, as he dropped from 128 to 114 pounds. At this writing, Bill is 86 years young and avoids social situations where meals are involved.



Patient #4

Patient #4 is a female who, at the time of diagnosis, was a regular dental-hygiene patient. Her dental healthcare professionals were doing routine oral cancer screenings. It all began with a sore on the left side of her tongue. She thought it was a strange place for a canker sore and sought out an oral surgeon when it did not go away after four weeks. It was removed and, unbeknownst to the patient, was sent for biopsy. She received a call that the biopsy had come back negative. What she did not know was that the pathology was read by a general pathologist, who missed the dysplastic cells. This is why an oral pathologist must be used.

Four weeks later, the site the biopsy had been taken from had not healed, so she went back to the oral surgeon.

“You are 32 years old, you’ve never smoked. The results of your biopsy show a hyperkeratotic lesion, a hardening of the skin similar to a callous. Nothing for you to be concerned about.”

Think about this … early stage oral cancer is often asymptomatic. Her response was, “But doctor, this sore hurts and it is not healing. It is uncomfortable to eat and talk.” She was told to rinse with warm salt water, use Orajel and return if it did not improve. After another four weeks, she once again returned to the oral surgeon with the same lesion, with no improvement. She was told that she must be irritating or biting it and she should return to her general dentist and have him “shave down” her molars, so they would not irritate her tongue.

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Her dentist shaved her molars, reminding her to return to the oral surgeon if the lesion did not improve. The white center of the lesion seemed a little smaller. However, she started to feel a gnawing pain in her tongue. With further investigation at home with a light and a mirror, she could see a red swollen area around the white center of the lesion. Once again, she went back to the oral surgeon. This time she was told she needed a night guard because she must be biting her tongue.

So she went back to her general dentist for a night guard, which she wore 24/7 except when eating and brushing. She thought things were improving until one night when she had an excruciatingly painful earache. Her physician said she had water on her eardrum. While in the medical office, she asked her physician to look at her tongue. She said she'd seen two oral surgeons, two dentists and a periodontist. He assured her that the dentists would know what to do with the lesion and put her on antibiotics for the earache. After 10 days, it became a challenge to eat and speak. She went back to the oral surgeon, demanding that something be done. The oral surgeon responded that the tongue is very small and, “We don’t want to cut it up unless we have to.” Another biopsy was scheduled.

At this point, the patient started to think she should look elsewhere for a definitive answer. She confided in a close friend who happened to be a professor of plastic surgery specializing in cleft palates. She was told to get herself to a major medical center, and was given the name of the chief of head and neck surgery at Mt. Sinai Hospital. It took three weeks to get an appointment.

Continue to the next page for more of Patient #4's story...


When the doctor saw her lesion, and felt her enlarged lymph nodes, he asked her how she was getting home, because he wanted to perform a minimally invasive procedure immediately.

When she woke up in recovery, her mother was by her side when the doctor said, “You have a squamous cell carcinoma on your lateral tongue.” Still woozy, she asked if it was benign or malignant. She was told she had an advanced stage of oral cancer.

OK, my reader, take a breath; I certainly needed to after hearing all that the patient had gone through up to this point. But hang on; the ride has only just begun.

For a woman who lived a healthy lifestyle with no family history or risk factors, a diagnosis of oral cancer was difficult to process. The patient returned home and began to prepare for her surgery two weeks later. She cleared her schedule, made arrangements for her children to be cared for and shared the news with friends and family. Her daughter was 5 years old at the time of her surgery.

After her surgery, her head hung to the left. A myofacial neuromuscular therapist gently worked to release the adhesions in her neck and taught her how to do an intraoral massage, which she still does daily. Every morning, she must push her head up when getting out of bed. Her hairdresser lifts her head for her from the washing bowl. She must support her head when the car stops short, and when leaning back.

Related reading: Make a commitment to finding oral cancer early

A tissue graft was placed on her tongue to replace what was removed during surgery. The tissue was very white and, before it adapted to the oral environment, it looked like a large wad of gum when she spoke.

She also suffers from dry mouth, common to oral cancer patient, and keeps a water bottle at her bedside. Over the years, her saliva has increased. She laughs about how her dry mouth is exacerbated when she indulges in a hot bath and a glass of wine.

It has been 17 years since her diagnosis and, during those years, she has had five negative biopsies, bi-lateral vocal cord polyps, periodontal issues and basal cell carcinoma in the radiated field on her upper chest, but no recurrence of oral cancer. She did experience an extremely bad split lip that took 28 dives of hyperbaric oxygen therapy to heal it. The dives also helped to maximize vascularity for future dental complications. The HBO treatments were two hours long, five days a week for six weeks. She had 10 more dives after a molar had to be extracted and she was in pain for more than a month. After the second dive, the pain was gone.

The battle of day-to-day life continues for all oral cancer survivors and their families. Think about the children who grow up with a parent who had has major and usually very disfiguring surgery. Think about the looks from people wondering just what happened.

What would life be like with early diagnosis? Had this patient’s cancer been diagnosed early, it would have been a two- or three-week recovery, plus or minus radiation. Compare that to late stage diagnosis, with six months of surgery, treatment and recovery, to be followed by a lifetime of dental complications, numerous doctor appointments and tests, health scares and compromised quality of life.



Patient #5

Patient #5 is a female who was a dental office consultant. Using fluorescent technology, a lesion was discovered on the lateral border of her tongue during a routine hygiene appointment. This lesion was monitored for six months, then removed with no complications or need for radiation.

Early detection and treatment saves lives and smiles.

Free e-Book: What you need to know about oral cancer detection

A dentist who owns one of the screening devices on the market said, “I have lost patients due to oral cancer. It was too late when I saw it with my naked eye.”

When will dentistry get it right? When will fluorescent technology be embraced and used daily to screen for abnormal tissues? When will all dentists, no matter the specialty, not hesitate to have the discussion with a patient about abnormal tissues? When will oral cancer no longer be the fastest-growing cancer in the country? When?