My career in dentistry started in June of 1992, with a job that provided the opportunity to learn skills in dental assisting and administrative duties. Classes to pursue my degree in dental hygiene would begin within weeks. At this very moment, my family suffered the shocking news that my mother was diagnosed with breast cancer. Her diagnosis was followed by a whirlwind of doctor visits, a mastectomy, and seven grueling months of chemotherapy. She suffered horribly with many side effects from her treatments which included oral side effects; horribly painful mouth sores (beyond anything I had ever seen before) and an extremely dry mouth. This combination made eating, drinking, talking and even sleeping difficult to say the least. She voiced her concerns to her oncology team only to be told there was nothing that could be done to relieve her suffering. It was just part of treatments that she needed to deal with. And so, my passion and my mission began. I knew at that time that I needed to pursue information. I needed to learn more to hopefully, someday, help someone the way no one could help my mom.
I was surprised throughout the years how often these learning opportunities came about. I realized that if I pay attention to my patient’s medical histories, ask questions and really listen to their experiences, there were endless lessens to be learned. Unfortunately, there seemed to be a central theme in the stories I heard. People had suffered with oral side effects during treatments for cancer. They were provided little, if any, information of ways to prevent or manage these side effects. And far too many developed long-term damage to their oral health that they were struggling to get under control.
After losing my father to Hodgkin’s Disease in 2005, I found an enhanced motivation to take these bad experiences, these learning experiences, and make something good come from them. I began by creating a volunteer program at a local oncology department creating oral care kits that were dispensed to each patient prior to chemotherapy or radiation to the head and neck. Each kit included an informational sheet that I designed describing oral side effects that may occur, along with simple tips to help manage or prevent them. The kits also included donated product samples from various companies along with the generosity of the dentist who I worked for at the time. By 2010, the financial climate was changing and many companies were no longer willing or able to provide the free samples I needed to stock the kits. By 2012, I simply did not have enough products available to keep the program going. I needed to make the decision of discontinuing the program or thinking bigger to create a broader reach. The thought of ending the program broke my heart. I felt compelled to do more but the reality of starting a business was daunting. Where would I begin? Was I capable to making it a success? Were my husband and I willing to take a financial risk to pursue an uncertain future?
The weeks and months of reflecting and brainstorming on ways to develop a business based on helping those facing the challenges of cancer treatments seemed to bring a succession of meant to be moments. If I did not believe in the concept of receiving signs from above that are meant to lead us in the direction we need to go, it became quite hard to argue their existence.
A couple key moments really stand out and are my “go to” examples at every presentation that I provide to dental and medical professionals. The first being a long-time patient who was a 20+ year breast cancer survivor. The cancer returned, this time found within her bones. The type of treatment she was receiving allowed her to continue her regular recall dental visits. When she returned to our office, I asked if she was experiencing any side effects in her mouth from her treatments. Her reply was, “Yes! My mouth is so dry, but it’s okay because the nurses told me to suck on lemon drops and that really seems to be helping.” This is the time when I normally hear a collective gasp across the room from dental professionals. I was shocked. How could a healthcare provider recommend that an immunocompromised, xerostomic patient who is so susceptible to decay and infection have prolonged exposures to acidic sugary substances? It was a recipe for disaster. I later learned that this is not only a common recommendation but many oncology departments to this day will provide large bowls of hard candy, such as lemon drops or Jolly Ranchers, for their patient to suck on during chemotherapy infusions. I do not use this example to be insulting to oncology professionals, rather to demonstrate the lack of communication between our professions and the differences in how we are educated. In fact, when taking an Oncology Management course in 2012, the text book had these same recommendations of using hard candies to stimulate saliva to relieve dry mouth discomfort.
Another example, and the final sign showing me that this was the path I was destined to take was learning of a local young woman who was diagnosed with Multiple Myeloma (MM). MM is extremely rare in a 22-year-old, so it was the last thing on the physician’s radar when she sought help for back pain. Her diagnosis only came about after the osteolytic tumor on her vertebrae had grown large enough that it caused her spine to collapse when she stood up from bed one morning. She was rushed to the hospital, unable to move, unsure if she would ever walk again. The tumor was removed, a metal plate was inserted to repair her spine and she had a few weeks of healing before beginning the first stage of her treatments of radiation therapy. She would wait a full 6 months from diagnosis until beginning her second stage of treatments, including high dose chemotherapy, stem cell transplants and IV Bisphosphonates, which could put her at risk for severe infections, dry mouth, oral mucositis (mouth sores), and medication-related osteonecrosis of the jaw. Not once within that 6 months did any of her medical providers recommend that she seek a dental evaluation to ensure there was no decay, infection, or needed extractions that could compromise treatments and put her at risk for short-term and long-term complications. Something compelled me to reach out to her family. After hearing her story and knowing she had not yet begun the second phase of treatments, I urged a dental evaluation and explained the risks. The following day, I received a call that this beautiful young woman already knew she had decay and a periapical abscess. She was purposely avoiding dental treatment to not cause her family further financial hardship. And, of course, why would she ever think a dental problem could cause complications with her cancer treatments when no one informed her of that fact? She was thankfully able to complete her dental treatment and have all 4 third molars extracted prior to starting these therapies. She started using gentle OTC oral care products to deal with oral side effects before they started. Statistically, 75-80% of those receiving stem cell transplants experience significant Oral Mucositis. She amazingly completed her intense chemotherapy and two stem cell transplants without developing one mouth sore. The thought that this beautiful person could have been sent into treatments with active infection, the fact that she could have risked severe complications, sepsis or future disfigurement because of lack of information and basic preventive services was my wakeup call. Just imagine how many times a similar scenario occurs each day, putting people at unnecessary risk. I’m most happy to report that this young woman has now had the chance to experience a wonderful life, including getting married to an amazing young man and finding a career she loves while currently exhibiting no evidence of disease. She is not only surviving, she is thriving!
Soon after this experience, my husband and I began the process to develop and launch our business, Side Effect Support LLC (SES). Our mission is to improve the quality-of-life for those diagnosed with cancer by focusing on the oral side effects associated with treatments. SES provides free online support and information to survivors and caregivers, as well as medical and dental professionals. A products section provides a small selection of OTC products to not only help relieve short-term oral side effects but minimize the risks of long-term damage to oral health. Continuing Education presentations are available to help all members of the dental team to provide optimal patient care.
Looking back to 1992, I never imagined that the helpless feeling of watching my mother suffer would someday lead to a calling and a career in an area that didn’t even exist at the time. What is now known as Dental Oncology is a growing field recognized as a vital component of cancer care.
You never know where life will take you. Make sure you look for those signs.