April is Oral Cancer Awareness Month, and dentistrytoday.com will be celebrating the event with blogs, news stories, and other features all spotlighting the disease. #OralCancerAwareness
April is Oral Cancer Awareness Month, and one of the most important things to know is that oral cancer rates are on the rise. These cancers can occur entirely without symptoms, and without a diagnosis they can spread aggressively to other parts of the body.
As a registered dental hygienist, I know that I play a vital role in helping to identify these types of malignancies. Yet sometimes among the presence of other dental issues, lack of client value in complete oral exams, and even time limitations, the oral cancer screening is overlooked.
We need to create a sense of urgency in screening, diagnosing, and treating oral lesions that are found. Today I’d like to share my personal struggle with oral cancer from diagnosis to recovery.
The First Signs
My story begins 3 months postpartum, after an incredibly difficult pregnancy.
As many of us know, residual pregnancy hormones can run amok on the oral cavity, so when I first noticed symptoms I chalked it up to my body simply reacting to post-delivery hormones. I noticed that my 47 retromolar pad was feeling tender and spongy, and the tissue appeared purplish in color.
|Figure 2. The post-op radiograph shows that the surgeons removed the malignant section of jaw as well as the first and second mandibular right molars.||Figure 3. Recovery is still underway, 9 months after surgery, but the worst is over. Regular preventive care, coupled with periodic complete oral exams, is the most effective way to help patients lives healthy and happy lives.|
I could retract the tissues with my tongue, which was super weird and gross, but my curious tongue kept investigating the exciting new “thing” happening in my mouth. And my jaw was feeling achy too.
After a couple of weeks of playing with the flaccid tissues, I decided it might be calculus so I had a prophylaxis with a coworker. Her clinical examination indicated that there may have been a ledge of calculus present, which was shocking to hear, as I have exceptional oral hygiene.
Thankfully after some scaling and root planing, my coworker declared the ledge was simply dental anatomy. Upon completion of the prophylaxis, a post-op periapical radiograph of the mandibular first and second molar area was taken to check if there was evidence of bone loss. The radiograph wasn’t distal enough to catch the tumor, but bone level was good and no calculus was evident so I was on my way.
I waited 2 weeks for healing but the tissues didn’t improve, and my tongue kept dancing around that squishy retromolar pad. The aching in my jaw became more pronounced. At that point, I decided I needed a comprehensive oral exam. I requested a panorex from my dentist, who also was my employer at that time.
After the clinical exam, I reviewed my panoramic radiograph and was specifically shocked by my finding in the image. There lay a lobulated lesion, half borders well-circumscribed/half borders erratic and jagged. Not enough emphasis was ever placed on oral cancer screening in school, in my opinion, but I did remember some core principles: irregular borders, pain, sudden change in tissues.
The words immediately out of my mouth to my boss were “It’s malignant. That’s cancer.” She disagreed, saying it was likely a residual/traumatic cyst from an extraction and that we should monitor it. All my third molars were extracted 16 years ago, so I felt it was an incorrect diagnosis, especially since a panoramic radiograph from 4 years prior was clear in the same location.
Some Second Opinions
I was shaken and my inner belly told me “No, Mags. Push. This isn’t right.” I posted the image on Facebook to consult with my dental community, meanwhile putting pressure on my office to get me to see an oral surgeon immediately. They pulled some strings and got me in 2 days later, thankfully!
My dental community, composed of many RDHs and DAs, all presented the radiograph to their employers. Save for one RDH who said her boss was concerned, everyone else said that their boss believed it to be a cyst and that it was nothing to worry about.
Though none of the dentists could agree on the type of cyst, they all did agree that the lesion was in fact a cyst, and not of concern. Yet 9 dentists and 2 oral surgeons all told me the same thing, that it was just a cyst, including the oral surgeon whom I saw for the initial biopsy. My inner belly still said, “No, it’s not. They are wrong.”
The day of my excisional biopsy with the oral surgeon, I was expecting a very simple procedure as was described to me at the consultation. The procedure was outlined to me as “having a deflated balloon peeled out of the jawbone.” It was to be quick, simple, and only a few minutes.
The day I sat in the procedure chair, high 10 ways from Sunday via oral and IV sedation, I said, “I need to see the cyst lining once you remove it.” The surgeon came in and the procedure was unpleasant—digging, heavy pressure, heavy scraping, noisy. It was not the deflated balloon removal I was told it would be.
That moment confirmed, in my mind, that it was cancer. The procedure took longer than expected, and they showed me what they removed inside of a vial. Two distinct “balls” floating in the solution. No cyst lining. Just these ominous orbs.
My husband booked a follow-up appointment on my behalf for 2 weeks post-op.
I enjoyed the rest of my sedation euphoria that day. My husband happily recorded me scolding some construction workers for slacking off in my neighborhood. Facebook thought it was pretty funny too.
After the Biopsy
My face swelled incredibly. The next 10 days were painful, and no painkillers were touching the pain. One week post-op, the oral surgeon’s office called me and said, “The doctor needs you to come in today.” I immediately knew the news wasn’t good. Why would they bring me in a week sooner than my 2-week post-op? I thought that if the biopsy results were negative, they would have waited until then to tell me.
My husband left work and took me to the office. We held hands in the consult room, hearts pounding. The doctor came in and very coldly announced, “It’s cancer. You’ll have to go to the Juravinsky Cancer Centre.” I had a thousand questions, to which the oral surgeon kept responding, “You'll have to talk to the oncologist” over and over.
He was lacking empathy, lacking compassion, lacking any information. He said I would need another surgery, that I would lose at least one tooth in that quadrant. I was shocked, but losing a tooth was better than losing my life.
We left and we cried so hard in the car. I still remember the sky that moment. The sun was shining but a dark gray storm was rolling in and the pathetic fallacy in the moment shook me pretty hard. By the time we got home, the whole sky was dark and it was raining as hard as our eyes.
Would my babies grow up without a mom? Would my husband be left alone? Would my parents lose their daughter?
Announcing the news to my family and friends was the most heart-wrenching thing I’ve ever done. Over and over, I sat in front of people I loved, and one by one, I crushed them. I watched their faces sink and their bodies slump. I watched their hearts shatter. It was horrific.
The next month was a slew of consultations and tests. Blood work, an arteriogram under sedation, an EKG, a CT scan with dye injection. I met with so many doctors during this whirlwind, each of which was able to disclose more and more information about my cancer and the upcoming surgery.
The oncologist and plastic surgeon explained my procedure. They would remove the malignant section of jaw, along with my first and second mandibular right molars, by cutting my face open and flapping it back for access. A 10-inch section of my fibula would be removed to reconstruct my face. All the blood vessels would be microscopically reattached.
I would have a percutaneous endoscopic gastrostomy (PEG) tube (a “feeding tube”) placed directly into my stomach from which I would absorb nutrients out of an external bag with formula. I would have a tracheotomy and would breathe through the hole in my throat instead of my mouth. Lymph nodes would be sent for biopsy along with the jaw segment to evaluate whether I would require additional radiation or chemotherapy treatment. A complex 8-hour surgery was inching its way closer and closer.
Finally, the surgery day arrived. Three nurses attempted to start an IV unsuccessfully. There was so much bruising and swelling in my hand and anticubital fossa from previous jabs that it was nearly impossible to direct a new IV into my veins. The medical team was not permitted to use the left side of my body for any blood-drawing or IV, in case of surgical complications that required bone harvesting from that side of my body.
Dr. James Young, my surgical oncologist, came in and marked his initials on my face with a sharpie, so no mistakes were made. He and my cosmetic surgeon, Dr. Carolyn Levis, were ready to undertake my extensive surgery. I kissed my husband goodbye and knew that would be the last time I’d feel the sensation of his fingers on my cheek.
I got wheeled down to the operatory. I could not see much, as I was not permitted to wear my glasses beyond triage. I squinted to see if the faces were familiar. I squinted to see if their instruments were wrapped. I squinted to see if everyone was gloved and using universal precautions. The room was incredibly cold and after some last minute confirmations and conversation, my body became heavy and I was gone.
I was woken with a shake by Dr. Young. “Wake up, Mags,” he said. “Everything went perfectly. But I had to sever the lingual nerve, so you won’t feel your tongue.”
That. Was. A. Shock.
I was disoriented, breathing through a hole in my trachea. I couldn’t move my head. Tubes hung out of my body from my head to my abdomen. And now my tongue was numb too.
The next thing I remember is hearing my husband’s voice and his hand petting my long, bloody hair. My parents and sister came next, and I still remember my mom’s heavy Polish accent whispering “My God” when she laid eyes on me. They cried. My eyes wouldn’t open. I just listened. My tracheotomy prevented me from speaking. I could only breathe, poorly, through a narrow tube.
I had an excessive amount of mucus. I violently coughed, non-stop, drowning in my own sputum. The nurses would come every 20 minutes and inject saline into my trach site, which caused painful and uncontrollable coughing, so I would expel the sputum. Then they’d insert a suction catheter, through the trach, deep into my lungs, swirling as they pulled it out.
During these treatments I was unable to breathe until the catheter was removed, followed by another 2 passes, and finally some relief for 15 minutes until the procedure needed to be done again. The suction catheter scratched my lungs each time, an incredibly painful experience. I was seated at a 90° angle, and anything lower would put me into violent coughing fits. I could not sleep. I did not sleep for 4 straight days except when my brain would shut off involuntarily for seconds at a time and my head would drop to the side. I developed bed sores.
I asked for no visitors. No parents, no sister, no husband, certainly not my children. Nobody needed to see me this way. I was on round-the-clock morphine injections. I had a saliva ejector in my hand, running 24/7 to suck up the ooze that gurgled out of my trach and any oral excretions that escaped my lips. Twenty-four seven. Non-stop suction noise.
I had intense visual and auditory hallucinations. I saw incredibly terrifying things. I heard the hospital breathing. My brain invented a song, which I heard playing in the distant halls, over and over and over. Each day was perpetually never ending, an indistinguishable nightmare between what was real and what wasn’t. My brain felt zapped. I couldn’t see properly; flashes of “ants” like on the TV when the cable goes out. I was inhuman.
I had fever spikes and heart palpitations. They wheeled me from test to test to figure out why I was experiencing these things. No medications helped, and none of the tests had any answers. They were shocked at the amount of sputum I was creating so I had a chest x-ray, which didn’t show anything. Just suffering upon suffering. I begged for death.
I used a whiteboard to communicate. I remember the day after the surgery I unexpectedly got my period. I was told this was a common side effect for young women after extensive surgery. The nurses cared for me the best they could.
The third day I felt a bit stronger, and an angel of a nurse got me out of bed and washed my hair, which at this point was a dreadlock of blood and iodine. She bathed me in a chair. She dressed me in fresh pajamas and underwear. I felt like I might survive after this miracle of a human being came to help me. She was incredible. I asked to see my husband and parents and sister.
They came and I smiled. A limp, numb smile. And they smiled too because I was starting to come back. I wasn’t just a blob of a person. My mom is a smoker. So is my sister. I remember taking the white board and writing “Please quit smoking. This is hell.” They said they would, but haven’t to this day.
The Road to Recovery
The physiotherapist forced me out of bed and got me shuffling about on day 4 and every day. She taught me how to move my Frankenstein leg, how to stretch, how to use stairs. The nurses taught me how to use my PEG tube at home, which I was expected to continue to use for months after surgery. The dietician prescribed specific formula to tube feed myself.
The next 3 days were for weaning off the heavy medications—my decision as the pain wasn’t unbearable, but the hallucinations were. Dr. Young capped off my tracheotomy site, and after some practice I was able to speak! My voice! My raspy, phlegmy, weak voice. But my voice! And no more deep lung suctions! I was able to gulp the stale hospital air through my mouth and realized that even breathing is taken for granted.
Days 5 through 7, I pushed. I drank liquids orally. I didn’t want to rely on that tube feed, which took hours for one bag. I walked. I did the stairs. I bathed myself. I finally got the courage to look into a mirror. My smile was limp. I was swollen. I was horrified with what this cancer did to me. I wondered if I’d ever look the same, if people would stare at the monstrosity that the cancer created.
My family and friends came to visit me every day from the fourth day onward, bringing me small talismans, smiles, and hope. I needed to get home to my family, and these people helped me get out of that hospital sooner than anyone ever expected.
Day 7, Dr. Young came in and said he was so impressed with my recovery and that I could go home! He removed my trach tubes and stitches and taped it off. They removed the drainage tube. I called my husband with this enormous surprise and he immediately left work to pick me up. We ran out of that hospital—well, he did. I rolled in a wheelchair. I felt the sun! I breathed the fresh air! Life would never be the same.
The next 4 months were at home recovery. Nurses visited every 3 days to change my dressings and make sure I was progressing. It was hard. I couldn’t jump back into things, but I desperately wanted to.
Mentally I had a hard time with the fact that despite being home, I was still unable to care for my children or myself. But I pushed. I pushed until I fainted in the shower one day and found my husband dragging me out. I realized I needed to slow down. So I did. I let people take care of me. I rested. I processed what had happened to me. My maternity leave was used to heal.
Foods smelled so good! Better than I ever remembered. Probably because I couldn’t eat whatever I wanted anymore. But my husband and my mom made sure I got to eat the finest purees of homemade cabbage rolls, perogies, and soups.
I really did hate that feeding tube! The formula would regurgitate sometimes and it tasted like plastic. I preferred eating my pureed Polish feasts orally. I stopped using the PEG tube entirely about 10 days after the surgery.
I lost 20 pounds.
The second biopsy came back 2 months after the surgery. I was given the news that the cancer was fully removed, that my lymph nodes were clear, and that I wouldn’t need radiation or chemotherapy! What a blessing the universe gave me! They removed the feeding tube at that time and taped it off. It healed within hours!
Today, I’m still recovering, 9 months later. But now is the easy part. The worst is behind me.
Dr. Young sees me every 3 months. He says I’m annoying because my medical terminology is better than his and it confuses him.
They could not give me a prognosis because the cancer was so rare.
Besides developing a different perspective about being alive, I have learned that you have to advocate for yourself. Push, if your gut tells you to push! Don’t accept the answers that you get if your inner self tells you otherwise.
Every day I am grateful the universe led me to become a hygienist. Had I been a layman and accepted the initial diagnoses, I would’ve gone on my way and likely lost half my face. Or worse, I possibly would have been dead in a few years as the cancer metastasized to my lymph nodes and lungs.
I have learned patience. I have learned that bodies are incredible! I have learned to love harder. (I didn’t know that was possible.) I have learned that the universe has intent for everyone, and everyone has to work hard listen to it speak, because often it only whispers.
As dental professionals, we have to use the power we have to be more diligent in oral cancer screenings. We have to send for biopsies, even if our evaluations of oral lesions seem of little concern. We also must educate! Teaching our clients to be more aware of their own oral cavities, to be cognizant of changes, and to feel urgency when lesions are discovered.
As health advocates, we must be aware that high-risk clients aren’t the only ones at risk for oral cancer. With so many variable factors, including environment and host response, we cannot sit back and simply assume our low-risk clients are safe from this debilitating disease.
Each person entering our operatory should be palpated and clinically examined frequently. Regular preventative care, coupled with periodic complete oral exams, is the most effective way to help our clients live healthy, happy lives. I know because I’m living that life.