In 2001, at age 47, Sandra Boody was diagnosed
with stage four, squamous cell carcinoma
of a left neck lymph node and the base of her
tongue. At stage four, it was inoperable. This was
considered an "out-of-the-box" diagnosis, since Sandy
had no risk factors. She didn't smoke or drink alcohol
and was not HPV positive, the usual risk factors. She also
wasn't a middle-aged male. Leading up to this diagnosis,
Sandy suffered repeatedly from severe upper respiratory infections,
sinus infections and a horrible case of the flu. At the
time, multiple lymph nodes were swollen on both sides of her
neck and some ulceration of the tissue at the base of the
tongue was noted by the ear, nose and throat (ENT) specialist.
Actually, she saw several ENTs as her health never returned to
normal. Sandy's request for a needle biopsy of the swollen
lymph node on the left side of her neck, which had not
returned to normal, was denied by more than one ENT. She
didn't fit the usual profile for cancer, so why bother doing
the biopsy. Eighteen months later, after multiple rounds of
antibiotic therapy, sinus radiographs that showed nothing,
and constant, extreme fatigue, Sandy proactively referred herself
to the Head and Neck Cancer Center at the University of
Pittsburgh. The department head at the Head and Neck
Cancer Center performed a surgical biopsy and delivered the
Treatment included daily external beam radiation therapy
with concurrent weekly chemotherapy for a treatment time of
eight weeks. She
also underwent brachytherapy, an
internal, sealed source radiotherapy plus surgically
inserted catheters into the tumor and lymph nodes. The combination
of these treatments all contributed to severe xerostomia.
The treatment protocol was an extreme attempt to save her life.
As terrible as the treatment was, Sandy is thankful that it worked
and that she has been cancer free for 11 years.
Xerostomia is the most common, interruptive side effect of
cancer treatment. Because normal as well as cancerous cells are
destroyed, the side effects range from acute to long lasting. In some
cases the xerostomia is so severe, patients have to stop cancer therapy
due to this painful side effect. Sandy has suffered with severe
xerostomia since undergoing therapy. Her daily oral hygiene routine
has changed over the years, as new products are brought to
market. Her personal experience provides dental team members
with insights to help them care for patients before, during and after
cancer treatment. We interviewed Sandy to determine the differences
between oral hygiene care then and now.
Sandy, thank you for taking time today to answer
questions about your personal experience with oral
cancer. Being a dental hygiene educator, when you
were diagnosed did you think you already knew what
oral care protocol would work for you?
Sandy: When I was diagnosed, the most common recommendation
was custom fluoride trays. Back then, most dental
professionals were just making fluoride trays and giving out
samples of dry-mouth products. This is what I was teaching
because it was the standard of care back then. When diagnosed,
I made the trays for myself immediately and fully expected to
use them for fluoride applications. I was surprised to find that
the fluoride gel application was difficult to tolerate. The
taste was unbearable and the viscosity of the
gel caused gagging. Fluoride gel is very
uncomfortable on inflamed,
Now, I teach the
making of custom oncology
trays to deliver oral moisturizing gels and
remineralizing products, not fluoride gels.
Fluoride varnishes have replaced tray delivery of fluoride.
One of the new uses for the trays when worn overnight is to protect
sensitive mucosa. I was surprised to learn that my own teeth
became weapons of mass destruction against my dry, sensitive
mucosa. Sharp edges and cusp tips can easily tear and cut
mucosa inside the cheeks and lips; especially sharp are the cuspids
and premolars. The oncology trays provide mucosal protection
from dangerously sharp tooth surfaces.
What was your oral care routine when you began
Sandy: A decade ago, I used the fluoride trays and used
over-the-counter dry-mouth toothpaste, dry-mouth oral rinse
and dry-mouth gels. I also rinsed with sodium bicarbonate and
used various moisturizing lip balms. Nothing was really helpful
back then. Things have changed a lot in just the past few years.
What is your oral care protocol today?
Sandy: Today, my oral care protocol focuses on elevating
my oral pH and protecting both my soft tissues and teeth. I
use a small-headed, soft-bristle toothbrush. Several brands advertise them as "sensitive" toothbrushes. I do prefer a
power sonic toothbrush on a low setting. I use an SLS-free
toothpaste and extra fine dental floss. For a rinse, I use a prescription
brand called NeutraSal Rinse, a super saturated calcium
phosphate rinse. I use this rinse morning, evening and
During the day I chew xylitol-sweetened gum. At the
moment, MightyFlow Green Tea moisturizing gum is my
favorite. Prior to lecturing and throughout the day I use
MedActive Oral Relief Spray.
In the evening I brush with a prescription-level fluoride
paste, rinse with NeutraSal and wear the oncology trays filled
with MI Paste Plus. I also use Spry Nasal Spray and MedActive
Oral Relief Spray on my tongue.
For daily comfort, I have to carry products with me wherever
I go. I really thought I'd find one line of products to take
care of all the dry-mouth and demineralizing problems, but
instead it's a lifetime of using multiple products to get through
the day. And my personal protocol changes as new products are
What are your recommendations for dental teams
faced with patients undergoing cancer treatment?
Sandy: Here are my top ten general recommendations for
treating patients prior to, during and after cancer treatment:
You lecture to dental professionals all
over the country. What do your audiences
take immediately back to their practices?
- Conduct a comprehensive dental exam using a CAMBRA
- Evaluate the dentition and remove rough surfaces and
sharp cusps to reduce potential tissue trauma.
- Advise patients wearing full and partial dentures that
they are at risk of tissue trauma and candida albicans
- Provide detailed self-care instructions using specific,
simple aids, including the use of over-the-counter
products, (e.g., explain how to apply gel to the teeth,
tissues and tongue).
- Replace and restore faulty restorations before cancer
treatment and place sealants to prevent caries and enamel
washout, also any needed periodontal therapy.
- Create printed instructions including websites providing
information on oral health care and in-depth oral
hygiene instructions. Include instruction for a daily selfcheck
for soft-tissue lesions, sore spots and inflammation
that should be reported to the oncologists.
- Minimize enamel and dentin breakdown with monthly
fluoride varnish applications and sealant applications.
- Tell them to strive for five xylitol exposures each day,
using xylitol-sweetened gums, lozenges, pastes, rinses and
sprays in their daily routines. Also have them check the
pH of oral care products they use, including rinses.
- Address the fact that altered taste sensations make it
hard to chew and swallow food by recommending neutralizing
rinses, sprays and gels that coat and moisturize
the oral tissues.
- Advise patients to avoid foods that are spicy, crunchy
and sugar-laden, and consult an oncology nutritionist
for a list of foods to avoid.
Sandy: My full-day courses are packed with
information, but the two changes most likely to
be implemented when attendees return to their
offices are using a written protocol and fluoride
varnish applications. I hear back from those who
attend my lectures that they actually write up a
protocol, print it out and give it to patients. They
also schedule their patients undergoing cancer
treatment for monthly fluoride varnish applications.
These applications begin before treatment,
and continue through and after cancer treatment.
Any last advice for clinicians?
Sandy: We are entering a new era in dentistry and oncology
with new products supported by research. The medical community
is beginning to embrace the oral-systemic connection. They are now
looking to us to help them navigate the difficult course of treatment
for patients with teeth, implants and restorations. The educated
consumer is proactive and interested in preserving their dentition
and their dental investment. A very exciting future is ahead!