Head & Neck Cancer Alliance, in collaboration with the American Head & Neck Society, hosted a free webinar, Oral Health for Head and Neck Cancer Survivors, on November 10, 2020 from 4-5 PM EST. The webinar featured Alliance board member, Joel Epstein, DMD, MSD as the medical speaker and Ms. Carolyn Dee as the survivor speaker and was moderated by Alliance President of the board, Michael Moore, MD, FACS.
Presented by:
Table of Contents
Webinar recording
Medical Moderator: Michael Moore, MD, FACS
Head and Neck Cancer Alliance President of the Board
Dr. Moore is an Associate Professor of Otolaryngology-Head and Neck Surgery and Chief of Head and Neck Surgery at Indiana University School of Medicine in Indianapolis, Indiana. His clinical practice focuses on head and neck cancer and reconstructive surgery, as well as skull base surgery. Dr. Moore has been working with other members of the Alliance and physicians around the United States to promote early detection and prevention of head and neck cancer. He also is involved in National awareness initiatives regarding the link between HPV and throat cancer and the importance of HPV vaccination.
Medical Presenter: Joel B. Epstein, DMD, MSD, FRCD(C), FDS RCS(EDIN)
Diplomate, American Board of Oral Medicine
Consulting Staff, Division of Otolaryngology and Head and Neck Surgery
City of Hope in Duarte, California
Dr. Epstein graduated from Dentistry in 1976 from the University of Saskatchewan in Saskatoon, Saskatchewan, Canada. He received a certificate in Oral Medicine and Masters’ of Science Degree in Dentistry from the University of Washington in Seattle, Washington, USA, in 1979. He is a Fellow of the College of Dental Surgeons of Canada in Oral Medicine/Oral Pathology and a Fellow of the Royal College of Surgeons of Edinburgh. He is a Diplomate of the American Board of Oral Medicine and was an examiner and President of the Board of Oral Medicine.
He was Professor in the Department of Oral Medicine and Diagnostic Sciences, and Director of the Interdisciplinary Program in Oral Cancer Biology, Prevention and Treatment at the Chicago Cancer Center, College of Medicine, Adjunct Professor in the Department of Otolaryngology and Head and Surgery of the University of Illinois at Chicago and on staff at Rush Medical Center and Advocate Illinois Masonic Hospital in Chicago.
Prior to that, he was Professor of Oral Medicine and Director of the Graduate Program in Oral Medicine, and the DECOD (Dental Care for the Disabled) Program, at the University of Washington, Seattle, WA. He was on the medical/dental staff of the British Columbia Cancer Agency; and Head of the Department of Dentistry at Vancouver Hospital and Health Sciences Centre; as well as on staff at other teaching hospitals in Vancouver, British Columbia, and a Clinical Professor in the Faculty of Dentistry at the University of British Columbia. He is a Lecturer in the Department of Oral Medicine, Eastman Dental Institute for Oral Health Care Sciences, University of London, London, U.K.. He conducts a private referral practice in Oral Medicine. Dr. Epstein has published in the area of oncology, infectious disease, facial pain and general areas of Oral Medicine, with more than seven hundred and fifty contributions to the literature in the form of papers, abstracts, textbooks, and book chapters.
Survivor Presenter: Carolyn Dee
Carolyn Dee, the former Mayor of Truckee, California, was diagnosed in early 2018 with squamous cell carcinoma of the tongue. She underwent surgery to remove ½ of her tongue. Tissue, to rebuild her tongue, was taken from her left wrist tissue, and then tissue from her thigh was removed to rebuild her wrist area. All procedures were done at The University of California Medical Center in Sacramento under the care of Dr. Michael Moore.
From mid-April through June, Carolyn received seven weeks of radiation treatment at Tahoe Forest Hospital. She was unable to undergo chemotherapy as a result of damage done to her heart while undergoing treatment for advanced breast cancer in 1997.
Subsequent to radiation, Jacqueline DDS of Sierra Crest Dentistry noted that Carolyn’s teeth were deteriorating rapidly and a decision was made to grind down and cap all teeth. She is now on an accelerated cleaning schedule of every two months indefinitely. Carolyn will continue to use saliva stimulators for the rest of my life.
As of this date the cancer is in remission and her remaining teeth are healthy.
Carolyn continues to dedicate her life to public service as the Commissioner of the Nevada County Transportation Commission
Poll Results
Questions & Answers During Live Webinar
1. (33:00) How are side effects different for different people?
- (Dr. Moore): Depends on dose of therapy that’s given, where it’s given. For example, cancer in the mouth, if you need a higher dose there, it may impact some of those things more than cancer in other parts of the throat
- (Dr. Epstein): Also depends upon whether radiation is combined with chemotherapy, general medical condition (underlying medical conditions), oral condition (local oral irritation, oral hygiene), and individual variation
2. (33:30) Saliva production and the impact on quality of life: what would you tell people after therapy on how to optimize their day-to-day saliva production for people with mild-to-moderate issues?
- (Dr. Epstein): Saliva is better than any artificial “replacement’ that can be given for several reasons, such as, health, protection and convenience. So, if there is residual saliva function, which is easy to measure, and people can usually tell you if there is some production as opposed to none, then systemic medications that stimulate gland output comparable to normal saliva production. Some may not have adequate saliva gland tissue that is functional and can be stimulated but most of the therapies, unless the tumor itself is in a central location will favor less dosing to one side of the face, which then leaves residual function. Newer radiation therapy (intensity modulated radiation therapy or IMRT), results in a treatment dose to the tumor and lower dose of radiation over a broader area but usually, there’s a residual function. Stimulation of residual function is the best choice. If saliva cannot be stimulated, we use the palliative rinses and agents that might coat, protect, hydrate and improve lubrication, as well as the epithelial hydration. For the teeth provide fluoride and calcium supplements. Oral hygiene, and diet instruction should be reviewed.
3. (35:30) Are there any new alternatives out there? Any ongoing clinical trial for stem cells, gene therapy within the glands.
- (Dr. Epstein): There is an active trial at NIH looking at gene therapy in salivary gland dysfunction following radiation therapy. They’re looking for people more than three years following radiation therapy. It is a NIH funded study.
- (Dr. Epstein): Other therapies, including photobiomodulation (low-level laser) may stimulate function. Photobiomodulationhas been primarily studied in cancer care in management of mouth sores (oral mucositis) and accelerating healing. In these studied there has been increased saliva production seen in some patients. Small studies of acupuncture suggest some will improve with treatment.
- (Dr. Epstein): The other newest therapy is the gene therapy that is headquartered at the NIH and more information about that study can be found at cancer.gov.
4. (37:30) Does it make a difference if you work with a certain dentist?
- (Dr. Moore): Absolutely, it is very important to have a dentist and an oral medicine professional who has a lot of experience with patients who have head and neck cancer, radiation side effects and surgical side effects. And not only to address things that come up but to really be preventative in many means to try and prevent some potential catastrophic complications from happening. I cannot emphasize enough, that for almost all our new head and neck cancer patients are assessed by our dental team. If they have a local dentist that they’re comfortable with who is comfortable with this sort of thing, then we’ll get them involved with them as well.
- (Dr. Epstein): Many cancer centers have a dental care team or can recommend informed/experienced dental providers. If not, dentists who have hospital background (eg: dental residency) and who have hospital appointments may be more experienced in the care needs of cancer patients.
5. (50:00) What is your daily regime during and after treatment? Can you do too much? Any dangers? (ie. Putting fluoride toothpaste on a night guard and leaving it on overnight)
- (Carolyn): A lot of brushing and cleansing. I did learn that chlorhexidine can discolor your teeth. So instead of putting it on straight and scattering the days that I did it, I cut it and put it in my water cup. So, it was probably four-parts water to one-part chlorhexidine and sprayed it on that way so I never had any discoloration but kept down the bacterial infections and help it out. I’ve also been using biotin gels, lozenges, most are sugar-free> There’s a great variety of stuff I do out there, you kind of need to experiment with it and see what is the most comfortable for you. I mean, some burns, yesterday’s changes a great deal. Some of it burns some of it works, some of it doesn’t work for me, but works for somebody else. Somebody told me to try olive oil, but I wasn’t sure about that. But there are a lot of options, so find those but be sure that you’re keeping your mouth clean so that the bacteria can’t grow and do damage. Being close with your dentist is going to be an important part of your life for the rest of your life [since] this isn’t going to go away. So, keep that up and if you’ll like me, I always have a cup of water or a cup of tea, or a cup of something that I can grab when it gets really bad. I’ve done liquid medication where I needed to and it’s just an everyday progress.
6. (52:30) (Dr. Moore): Xylitol was mentioned [in the chat box] which has been recommended by many, chlorhexidine is typically a prescription that you would write but a lot of times it’s diluted because of the version that you get and again, can be fairly strong and can have a tendency to cause some discoloration as well.
- (Dr. Epstein): Chlorhexidine is available in an alcohol base and a water base; the latter will be less irritating for use. Risk of stain is low at the strength available in the US and needed for an adequate antimicrobial effect.
- (53:30) (Dr. Epstein): Fluoride issues, some of that depends on how dry the mouth is as well. So, in a number of cases with some residual function, we can reduce the frequency the fluoride applications. There are some studies that have shown that reducing fluoride in the mouth guards, which has evidence of most effectiveness of fluoride. Following treatment, you may be able to do it once, or twice a week, rather than daily depending on cavity risk. Intense use of fluoride may provide excess fluoride and tooth enamel may become brittle and less flexible that can lead to loss of enamel due to fractures. So, you can use too much fluoride. But in cases where people that have no saliva function remaining and if there’s this demineralization or tooth damage ongoing, it remains daily with the most effective means of application using custom-made mouth guards.
- (Dr. Epstein): The next approach can be just brushing with the higher strength fluoride products which are prescription and replacing abrasive toothpaste, with a less abrasive product e.
- (Dr. Epstein): There’s mention of xylitol, which is an interesting substituted sugar that can kills cavity producing bacteria. So, you can look for artificial sweeteners and foods, for example, mints, candies, or products that might stimulate function based upon taste and presence in the mouth. Some people have upper GI irritation or sensitivity but that’s pretty uncommon.
- (Dr. Epstein): Chlorhexidine is an interesting product, it is prescription. There’re two main forms of it and available commercially, one has alcohol in it and tastes like regular mouthwash and can stain teeth in a percentage of people. The other is water-based and there is actually was some manufacturing issues just in the last few months that will managed, because there isn’t any alcohol in it, it’s less irritating to the mouth lining. So, if there’s buildup of plaque bacteria that are causing gum and tooth damage, that’s an appropriate product.
7. (56:30) Insurance coverage of the pre-treatment evaluation and again the more frequent assessment afterwards because a lot of times, plans may cover twice a year but don’t cover some of the extra. Any tricks of the trade that you’ve used to allow for that to be covered?
- (Dr. Epstein): Insurance coverage depends on the insurance. As the government looks at health discussion is ongoing.
- (Dr. Epstein): Depending on the environment and insurance, pre-treatment dental assessment prior to head and neck cancer treatment may be billed or reimbursed to a patient through medical coverage, as a “medically necessary service”. The insurer may respond that it is “dental”, but in Medicare billing and reimbursement may be possible for the visit. Pretreatment dental surgery may be billed medical in some cases. Specific dental procedures are not.
- (Dr. Epstein): When I see people in hospitals, following cancer therapy, we bill as a medical visit, but we are unable to bill specific dental procedures. In other words, if you need a filling post-treatment there is no potential to bill using medical codes. This is a result of the separation of oral/dental from medical.
- (Dr. Epstein): Unfortunately, that’s the hole in oncology care, in particularly and specifically in head and neck cancer care, because many of the treatments may lead to dental/oral complications that need to be managed. Rationally, this should be more medically oriented than it is, but done in a private setting by a dentist, the first response by most insurers is insurance denial.
- (Dr. Epstein): The other problem is that most people, especially if over 65 and retired, do not have dental insurance. The issues become relative cost benefits of prevention, which should be continued
- 1:00:00 (Carolyn): I agree, there needs to be some sweeping reform. In my case, the biopsy was considered medical, so my oral surgeon was about to submit that. The post-work, was covered up to the maximum of my benefits and the cleaning, I have insurance in my company, and I get twice a year and all the others I have to pay for even though they admit that this is due to a medical condition not just every day, dental care. I talked to Medicare about it and they said that they understand that it’s a surgical visit, it’s very seriously medical but we do not cover any dental at this point. It’s an expensive proposition to have all your teeth taken care of. So, yes, I agree, that needs to be on everybody’s agenda. So, start looking at how we can implement some reform in that field. It becomes critical in these cases because people are already dealing with challenges, physical, emotional, financial and then putting this on top of it. If we can get some of them to recognize these as medical conditions rather than dental conditions, it would be a huge help to people.
8. (1:01:30) When do you we start to worry about things? Whether it’s in the context of like and plainness or just as you’re after treatment.
- (Dr. Moore): I think when things are progressively getting worse and not better. Whether it’s the implants you’ve had some white patches that have been followed, and they start getting more sensitive, more painful, certainly if they start bleeding or you start noticing any depth or texture to them, those are things you want to have evaluated. Err on the side of caution, certainly if it’s progressing over a couple of weeks, you would want to have it seen, in worst case, if it ends up, hopefully being nothing, you can go and be seen and if they said it’s nothing to worry about err on the side of caution because the longer you wait if it is turning into something more significant, you’d rather get it addressed sooner rather than later.
Questions & Answers
1. Can you please discuss lichen planus on the tongue and in particular what to look for that would indicate it may be turning cancerous?
(Dr. Epstein) Lichen planus is the most common oral autoimmune condition, it has a small risk of progression to cancer, estimated at approximately 1% of chronic cases. In people with oral cancer and chronic lichen planus increased focus on control of the condition and increased follow-up is warranted. Changes in oral findings may be subtle, such as a change in the surface to a more granular texture, and thickening of tissue. In the setting of prior cancer, increased and expert evaluation and management is indicated.
2. How much time per day should the dental trays with fluoride be in place?
(Dr. Epstein) The standard recommendation is 5 minutes per day (see above discussion regarding fluoride).
3. My dentist wants to straighten my teeth via Invisalign. Am I correct that post-radiation the chance of success is low?
(Dr. Epstein) Invisalign produces gentle forces and should be possible, but high dose radiation does affect bone viability suggesting the process may be slow. The nature of the forces is unlikely to lead to bone necrosis.
4. Are these symptoms irrespective of stage? Or is there a further breakdown based on stage of diagnosis?
(Dr. Epstein) Oral and head and neck symptoms depend upon site of the cancer, stage of the cancer, the treatment provided, individual susceptibility, underlying medical and oral conditions.
5. About a month ago, tubarial salivary glands were "discovered" as disclosed at the Netherlands Cancer Institute. Can these glands (that were not radiated) be stimulated for salivary function.
(Dr. Epstein) Any residual salivary gland tissue can be stimulated by use of salivary stimulating medications.
6. Can you cause harm by overusing toothpaste with prescription fluoride? Can I put some of the toothpaste in my night guard and keep it in all night?
(Dr. Epstein) Toothbrushing with fluoride toothpaste does not reach the concentration or contact time that fluoride in mouthguards can. The fluoride medication tray (guard) covers the entire tooth to the gum line. Night guards do not cover the high-risk site of gum lines and will not aid in topical application
7. What is TMJ?
(Dr. Epstein) The common use of the term “TMJ” is jaw joint, jaw muscle dysfunction that can result in limited movement and facial pain. In medical terminology TMJ is the jaw joint. The better term is “TMD” which is used to describe the broader condition of jaw joint and jaw muscles and related symptoms.
8. Brush teeth before you eat? Please explain again.
(Dr. Epstein) Brushing teeth before eating displaces and affects dental plaque, the bacteria that use dietary sugar that damages the teeth. Removing bacteria prior to eating reduces the potential of bacterial activity to damage oral tissue.
9. I had both bone exposure and necrosis which was treated with 40 dives in the chamber which worked. Would you discuss this in your discussion?
(Dr. Epstein) HBO has been an common recommendation for years as an adjunct in treatment of bone necrosis, but controlled studies show controversial results. Other treatment approaches include medication management (Trental, Vitamin E) and surgery.
10. Can you talk about hyperbaric oxygen treatment? my dentist wants to pull my remaining two molars in the left lower part of my mouth and I've been resisting this since I can't have any bridges/implants etc. He says I should have HBO treatment prior to pulling the remaining teeth, would like to know your thoughts.
(Dr. Epstein) Surgery should be avoided whenever possible in high dose radiated tissue. Your dentist should coordinate planning with radiation oncology and an experienced dental provider with experience in head and neck cancer. Retaining the tooth, with root canal if possible and avoiding surgery is a better choice in the high dose radiation volume than extraction. Pre-radiation dental treatment to manage teeth at risk of future surgery is the goal to reduce future need for surgical care. Following cancer therapy prevention is the key to reduce the need for surgery.
11. Is teeth alignment a possibility? Will radiated bone respond to realignment techniques? Or will it loosen teeth?
(Dr. Epstein) Tooth movement is possible following cancer therapy, but depends on oral health, radiation therapy provided, but must be done slowly with low forces if considered.
12. Can you further explain the 9.0 fold recurrence number? Recurrence is 9 fold for 2nd cancer. Does that increase with each cancer or is it 9 fold for each cancer diagnosis?
(Dr. Epstein) Those with prior cancer have a much higher risk of cancer-sometimes called a “field effect” of carcinogen or viral exposure and those with prior radiation therapy. The risk of recurrence or new second primary is up to 9x, indicating the need for careful head and neck, oral and ENT follow-up.
13. Did I hear you say something about saliva therapies beyond things like the xylitol tabs I take at night?
(Dr. Epstein) this needs to be discussed with experienced providers: a number of prescription salivary stimulating medications are available, prescription fluoride, antimicrobials (eg: chlorhexidine) must be prescribed. Various topical agents are available for wetting, lubrication and hydration of oral tissues. Lip protection must be remembered. Red and infrared light therapy may be considered (above).
14. You mentioned brushing teeth before meals, will rinsing mouth with water also be helpful?
(Dr. Epstein) rinsing with water prior to eating will not affect oral bacterial and other then short-term wetting be of no advantage.
15. Is there a list of dentists that have experience with H & N patients/survivors? Hard to find a dentist that has this knowledge and experience. I am in MN.
(Dr. Epstein) A nearby cancer center may be able to provide suggestions of providers, nearby university may also assist.
16. Are there therapies that will provide sufficient saliva while sleeping?
(Dr. Epstein) Salivary stimulation with medication of light therapy may be possible. Various rinses/sprays are available and one product “Xylimelt” was developed for extended effect and may be used at night.
17. Obturator in or obturator out at night? I have heard both from dental providers so no standard?
(Dr. Epstein) Likely depends on the design of the obturator and comfort at night; in general, it is suggested prostheses be left out at night, but in the setting of obturators this may be variable.
18. What medications work best to stimulate saliva?
(Dr. Epstein) These are prescription medications: Salagen, Evoxac, Bethanechol.
19. Do you have a preference for prescribing Pilocarpine vs. Cevimeline? Or alternative Rx?
(Dr. Epstein) Response is variable, and the medications have different side effect profiles. In general, Salagen has the highest side effect profile. The more important question is related to assessment function, as if there is no residual gland function, medications for stimulation are not effective.
20. I've heard of acupuncture helping increase saliva in patients. Your thoughts and/or experience on this.
(Dr. Epstein) Limited studies show potential stimulation of function with acupuncture, and photobiomodulation (low level laser therapy).
21. Fluoride treatments are obviously indicated for good dental health. Does fluoride also cause drying of the mouth?
(Dr. Epstein) Fluoride and oral symptoms depend more on the vehicle than fluoride content.
22. What is the BEST course of action that I should take regarding trismus? Mine is pretty severe and very painful.
(Dr. Epstein) Discuss with your oncologist, referral may be indicated to experienced physiotherapist, prescription medication that may affect fibrosis (eg: Trental) and photobiomodulation or low-level laser).
23. For trismus, regular and frequent mouth stretching exercises and PT is important. The earlier you start, the better as it is tougher to regain movement than it is to keep it. Therabite can be helpful but is often not covered by insurance.
(Response from attendee) OraStretch press is covered by Medicare part a and b for hnc patients. We also check all insurance eligibility and benefits, not just Medicare at Cranio Rehab.
24. Thank you for this Webinar. We need it. My question is concerning Stomatitis. I have mouth sores that do not heal. Any suggestions?
(Dr. Epstein) Chronic mucositis can occur, but there may be multiple causes including nerve sensitivity that results in oral sensitivity, also superficial infections can occur. Diagnosis is needed and a cause is seen treatment is directed at a specific condition. If management is not successful, treatment of symptoms is indicated. I suggest contact with oncology and possible referral to experience oral care provider.
25. I rinse frequently with baking soda and water is there another product that's better?
(Dr. Epstein) Baking soda and water may be soothing and reduces acidity; the rinse chosen depends upon the condition and symptoms being treated.
26. Has anyone ever had success with dry needling? I have patients with mixed reviews and can’t find much in literature.
(Dr. Epstein) This will fall into the acupuncture discussion, where there is limited evidence for dry mouth and pain.
27. Any suggestions for mouth rinse or tooth paste for the dry mouth and bad breath?
(Dr. Epstein) Best is to treat the dry mouth; symptom management for bad breath is a fall back/ palliative treatment. Multiple mouth wetting products available and depend upon individual preferences.
28. Who/where can you get chlorhexidine?
(Dr. Epstein) This is prescription but easily available.
29. Most chlorhexidine rinses include alcohol, which I've understood is not something we should have because of increased risk for recurrence. Is this true?
(Dr. Epstein) Yes, most do contain alcohol (“Peridex®”, a commercial product “Paroex®” is available, and chlorhexidine rinse can be compounded.
30. Allergy to fluoride!
(Dr. Epstein) Allergy to fluoride is most likely due to the vehicle.
31. Can you use prevident 3 times a day and fluoride trays before bed? Is that safe?
(Dr. Epstein) Intense use of fluoride over an extended period may not be needed, much depends on dental health, dental damage/cavity risk, and saliva production. Advice should be sought from the dental provider. Most people can reduce use of fluoride trays to weekly after resolution of treatment complications during the active treatment of the cancer.
