Kathy LaTour is a breast cancer survivor, author of The Breast Cancer Companion and co-founder of CURE magazine. While cancer did not take her life, she has given it willingly to educate, empower and enlighten the newly diagnosed and those who care for them.
Certain cancer treatments can affect the mouth, so dental health should be a lifelong commitment.
Regina Parker always maintained her dental hygiene with regular cleanings and daily care. Until age 53, she had had only a filling or two, but that was before two bouts with cancer.
In 2010, Parker received a diagnosis of stage 2A breast cancer and began chemotherapy. Her oncologist then recommended a prophylactic oophorectomy, the removal of the ovaries to help lower the risk of ovarian cancer. “I had (the oophorectomy) in February 2011,” she says. “Surprise! Cancer in both ovaries.”
Parker’s disease was stage 3C. She had debulking surgery and another six rounds of chemotherapy with Taxol (paclitaxel) and carboplatin, which ended in August 2011. She was put on an aromatase inhibitor, a type of hormonal therapy with known side effects such as heart problems, bone loss and broken bones, from September 2011 through August 2016 to help prevent the cancer from returning. Since 2011, Parker has been cancer-free.
Her mouth, however, has not fared as well as the rest of her. From 2011 to 2018, Parker estimates, she has paid $10,000 out of pocket to cover nine crowns, numerous fillings and a root canal because of dry mouth and the resulting decay.
But Parker says neither her oncologist nor her dentist recommended any change in her routine of cleanings every six months, and the only side effect discussed was related to Prolia (denosumab). She received shots of the medication twice a year for three years to build back bone density. Parker had bone loss in her mouth and femur from the aromatase inhibitor.
“The jaw necrosis was the only dental issue I was ever warned of besides the increased risk of infection while I was on chemo,” Parker says.
Osteonecrosis, or the death of bone tissue, is one of the rare but serious side effects of Prolia. The condition can be triggered by a tooth removal, according to the American Cancer Society.
In one instance, Parker’s dentist refused to remove a tooth after learning she was on Prolia, forcing Parker to find an oral surgeon to do the job.
Although Parker’s dental troubles continue, she now has insurance that covers part of her oral work. Parker has tried to determine whether these problems are connected to her treatments but has received little confirmation. “I’ve told (my doctors) the chemo messed up my teeth and that I have had lots of dental problems,” Parker says. “They just kind of shake their heads and say, ‘Yeah, it could be treatment-related.’”
Stories like Parker’s frustrate Dennis Abbott, D.D.S., an oncologic dentist in Dallas, Texas, and a member of the International Society of Oral Oncology (ISOO), who says the mouth is consistently forgotten when it comes to cancer treatment. There is no doubt that Parker’s crowns and tooth decay came from her treatment, he says.
A third of all people treated for cancer will have oral complications that may interfere with treatment or affect quality of life, according to the National Comprehensive Cancer Network (NCCN).
But aside from a few fellowship programs, dental schools have yet to offer degrees in oncologic dentistry. Abbott’s designation as an oncologic dentist comes from his own study of the topic and continuing education classes.
Cancer treatments, such as radiation to the head and neck, chemotherapy, and blood and marrow transplantation can cause oral complications, according to the NCCN. Side effects specifically related to oral health may include dry mouth, infections, tooth decay, mucositis (painful inflammation), difficulty swallowing, loss of sense of taste and osteonecrosis. “Dry mouth is the big instigator of tooth decay, and it travels like wildfire,” Abbott says.
Similar to patients at risk of osteonecrosis with Prolia use, those who have received intravenous and oral forms of bisphosphonate therapy — used to prevent the loss of bone density — are also at risk, Abbott notes.
“There is an 80 to 100 percent chance patients with head and neck cancer and stem cell transplant recipients will develop a side effect before, during or after their treatments,” says Deborah Saunders, D.M.D., B.Sc., presidentelect of ISOO and medical director of the dental oncology program at Health Sciences North/Horizon Santé-Nord in Ontario, Canada — a position she has held for 17 years.
The program brings dedicated dental faculty to patients to help meet their oral needs. However, Saunders says she also sees patients on active therapy for breast cancer and rectal cancer who need an assessment because either their physician has seen deterioration in their mouth or they’re having acute complications, such as mouth sores.
Many reasons may explain why these side effects are often overlooked. Some members of the health care team may not understand the immediate and long-term importance of oral health in these individuals, Abbott says. “For some, it is one more hoop they have to jump through, and they may not know who to turn to,” he adds. A lack of clinical trials needed to support a change in diagnosis and treatment is another barrier.
Cost also plays a role. In his practice, Abbott says, he often sees patients come up against financial toxicity. “How are people going to pay for it? How are people going to get the treatment that they need after I identify it?” he asks.
In 2016, about 74 million Americans did not have dental insurance, according to the National Association of Dental Plans. And many patients do not have the thousands of dollars to put out of pocket to get their teeth fixed. Parker worked out a payment plan with her dentist and cut back in other places to pay for her care.
The NCCN, which sets standards for cancer treatment, acted in June 2018 when it updated its section on head and neck cancer, adding recommendations to include extensive pre- and post-dental exams and treatment for patients with this disease.
“The growing acceptance among oncologists that oral issues can be critical to their patients with head and neck cancer is a positive step,” Abbott says. “But oncologists need to look at all patients who are getting an immunosuppressant drug of any kind.”
He says there is still no “bridge of understanding and realization that we are dealing with some pretty bad bugs here, some of which can make bacteria that are normally found in the flora of our bodies become pathogens.”
Until oncologists make that connection, they are not going to understand the importance of the oral medicine side of it, Abbott says.
Prevention is key, according to Saunders, who adds that keeping the mouth clean and moist is critical not only as a person moves through their treatments but also afterward, since some of the side effects can appear later. Dry mouth causes the most side effects in the teeth, Saunders says. Saliva contains many components for overall health, such as digestive enzymes and immunoglobulins. However, it is the mineral that is found in saliva that keeps teeth hard and mineralized, Saunders says. When saliva flows and the quality of saliva is altered, teeth can become demineralized quickly, which can lead to decay. Supplemental fluoride and re-mineralizing agents, such as calcium and phosphate, are essential to maintaining the integrity of tooth enamel.
Using a bland mouth rinse of baking soda and salt, caring for the skin, swallowing exercises and understanding that oral care will be crucial for the rest of a patient’s life can also reduce oral side effects, according to recommendations from ISOO.
No patient loses their teeth from the side effects of head and neck radiation therapy if they are compliant with mouth care, Saunders says. “If the radiation beam is high enough that it destroys the ligament around the tooth that stays in the jawbone, yes, you can lose a tooth that way,” she says. “But most patients will lose their teeth after the radiation treatments are over simply because they’re not caring for them. They’re not applying fluoride. They’re not brushing them twice a day.”
In working with patients post treatment, Saunders talks with them about moving forward as a survivor and not a victim. She says that she often uses the quote “a lifelong commitment to oral care.”
Saunders lets patients know that the game has changed and that this care will be the new norm. “It reassures them that they are not alone, that the side effects that they’re experiencing are common to many and this is normal, even though it doesn’t feel comfortable,” Saunders says.