As silly as it sounds, I was destined to work in dentistry. As a small child, I loved to brush my teeth and even looked forward to my dental appointments. Papers from a kindergarten assignment attest that my favorite color was blue, my best friend was Barry, and I was going to be a dentist when I grew up!
My first job in a dental practice was with on-the-job training as an assistant with some administrative duties, starting in 1992. This time accompanied a great deal of personal stress as I was scheduled to begin classes for dental hygiene within a couple months and my mom announced that she received a breast cancer diagnosis that would be treated with a radical mastectomy and chemotherapy. As I witnessed her suffering with severe dry mouth and oral mucositis, I felt frustrated with the lack of information available about how to lessen her pain. I was confused at how her suffering was dismissed as “just part of treatments”. I felt compelled to increase my personal knowledge in this area and find a role with more autonomy with patient care. I wanted more.
I continued in this role while pursuing my degree in dental hygiene. The amount of hours that I worked in addition to classes and being a family caregiver was overwhelming but I was determined to succeed. After receiving my license, I found myself quickly disillusioned. I envisioned that being an RDH would provide more independence and increase my passion for dentistry, yet I felt my spirit being squashed. I had worked too hard to get this far but, inside, I still wanted more.
Through the years, I encountered a growing number of patients that were cancer survivors and felt compelled to question them if they had also experienced oral side effects during the treatment process. What I learned surprised me! While not everyone experienced problems in their mouth, many did. And for those who did, very few reported being informed of what side effects may occur. Even fewer reported being provided any information on ways to prevent or lessen these issues. The focus appeared to be mainly reactive rather than proactive and preventive. And sadly, some of the recommendations or solutions being provided to patients were detrimental to oral health and contributed to problems long after treatments are complete, such as sucking on lemon drops to ease dry mouth discomfort. Some patients were transferring a great deal of time, money, and stress previously invested in treating their cancer directly into a dental setting. I realized that the effects of cancer and cancer therapies do not necessarily end when treatments are over and we, as healthcare providers, should be mindful that it is not just about surviving but also about maintaining as much quality of life during the treatment process and throughout survivorship.
The quest began to take any and every class available to learn more. Unfortunately, because of a divide between medical and dental education, I was denied access to various oncology courses being an RDH. But I was persistent to find opportunities and discovered that oral side effects are not only quite painful for some but can increase risks for dangerous infections while the immune system is suppressed. I learned that because oral health was not considered part of the equation from the beginning, some patients were entering into treatments with active decay and/or infection being completely unaware of how this would cause dangerous complications with their care. There was rarely encouragement to see a dentist before treatments began to remove or repair any problems. There was little if any communication between oncology and dental teams to effectively coordinate care. Patients were not being provided with the information they needed to best help themselves. In my mind, they were being denied power to have more control over their own care, their own body, their own life. They deserved more.
My father also became ill in the late 90’s and required several years of care prior to receiving a diagnosis of Hodgkin’s Lymphoma in 2004. I clearly remember his first chemotherapy appointment and being provided with a large 3-ring binder filled with information about what to expect. One small paragraph on the bottom of page 26 addressed oral side effects. While he did not experience these specific issues, the other effects of chemo were too much for his body to take. Within just a few months, we were faced with the decision to continue chemotherapy and he would most likely not survive from the side effects, or discontinue treatments and let the cancer run its course. Treatments were discontinued and I was heartbroken. I no longer just wanted to do more, I NEEDED to do more!
I presented the idea to my dental teammates of creating a volunteer program at the oncology clinic where my dad received his treatments. With their help, each patient receiving chemo or radiation to the head and neck region would receive a “goody bag” that included easy to understand information about the most common oral side effects that they may experience along with simple tips to manage them. The kits also contained a sampling of products that were generously donated by various companies. The program was well received and it brought me extreme joy as the nursing staff and patients would periodically reach out to express how grateful they were. Eventually, the product donations became harder to come by and by 2012, it was time to make a decision; give up (again, insert broken heart here) or find a way to do more.
I desperately searched for resources and ways to become more involved in this area of care. It was hard to understand why there was such a lack of information and opportunities that were available. The need was evident to me and I asked myself, “Why isn’t someone doing something about this?” And a voice entered my head to ask, “Why don’t you do something about it?”
In 2013, Side Effect Support LLC (https://sideeffectsupport.com/) was launched as an online resource for cancer patients, family caregivers, and healthcare providers to reduce harmful oral side effects or treatments. The goal to improve the cancer care experience, not only during the treatment process, but throughout survivorship is achieved by providing:
- Free educational, easy to understand blog articles for patients and family caregivers
- Free educational blog article for healthcare providers with the goal to bridge the communication gap between medical/oncology and dental teams
- Printable “Cancer Treatments & Oral Health” patient brochures
- Affordable over-the-counter oral care products appropriate for their unique needs
- Virtual dental care within 10 minutes or less 24/7, 365 through a partnership with The TeleDentists (https://sideeffectsupport.com/pages/teledentists-saves-you-time-money)
- Presentations for support groups and for medical/oncology providers
- PACE-approved continuing education for dental professionals sponsored by Custom Dental Solutions (https://customdentalsolutions.com/)
- A new “Partner’s Marketplace” that will offer direct access and discounts for products and services with partner companies
It was very difficult to expand this resource to what I envisioned while continuing to work clinically full time. 2019 brought an amazing opportunity to hang up my scalers and join Custom Dental Solutions as their Community Relations Manager and allow me flexibility outside of the operatory to grow our reach.
While Side Effect Support is the epitome of a small business and what I often refer to as my “one man show”, it serves people world-wide who are facing incredibly difficult health challenges. It is nothing less than joy to continue to build this one-of-a-kind resource. While the primary goal is to help others, it also provides me with an indescribable fulfillment. It provides my heart more.
Jill Meyer-Lippert RDH is the founder of Side Effect Support LLC (https://sideeffectsupport.com/), an online resource for cancer patients and healthcare providers to reduce harmful oral side effects of treatments. Jill provides educational and community relations services with Custom Dental Solutions (https://customdentalsolutions.com/), is a 2014 Sunstar Americas/RDH Award of Distinction recipient, a member of the Oral Cancer Foundation’s RDH Advisory Board, and a member of TeethCloud’s Thought Leaders (https://teethcloud.org/).