Medical and scientific issues basal cell carcinoma of the tongue.
As we talked, it was clear that Paul's interest in the Dampfer Mitt (my device for holding mutes) was unique. He wanted the device primarily to keep water more accessible during performances, but not because of nervousness and the dreaded "dry mouth" that some horn players experience with anxiety. For Paul, having hydration close at hand is imperative because of a medical condition that has caused him to lose most of his salivary gland function; a bout with basal cell carcinoma at the base of his tongue.
Paul's story is informative and compelling for us in at least two ways. First, it shows the importance of being an informed patient seeking multiple opinions regarding both diagnosis and treatment; and second, it illustrates how such resourcefulness has allowed him to develop strategies for effectively dealing with potentially career-threatening adversity.
When asked about the initial signs and symptoms of his disorder, Paul was quick to point out that he was completely unaware of any trouble. He had no symptoms or pain, but did have an enlarged lymph node on his neck that his daughter noticed one day and pointed out. Lymph nodes are a part of the human body's lymphatic system, which is intimately involved in our immune function, protecting us from disease. This amazing defense system deploys scavenger cells that constantly travel throughout the body, identifying, and often digesting foreign substances that pose a threat to us. Among these are viruses, some of which are carcinogenic. The remnants of these substances are ultimately brought by the scavenger cells from all parts of the body via the lymphatic system to the lymph nodes where other specialized cells can identify them and activate varied defense strategies to disarm them wherever they are found. Swollen lymph nodes are not uncommon, often occurring even when we are modestly ill, but unknown to Paul, this particular swollen lymph node was physical evidence of serious underlying trouble. More out of curiosity than concern, Paul decided to seek medical attention.
Initial testing involved a biopsy of the swollen lymph node to determine the types of cells that had accumulated there. Normally, all cells have marker molecules, often on the cell surface, that allow them to be identified as to whether they are familiar or foreign to the body as well as where they are coming from. In Paul's case, these markers were not initially identifiable, and the diagnosis was that the cells gathered in his lymph node were immature, unidentifiable, and essentially harmless cells. The presence of the swollen node continued to concern Paul, however, and he ultimately sought reference to the Mayo Clinic in Rochester, Minnesota. There, more sophisticated testing was conducted, and it was determined that Paul had a form of basal cell carcinoma; i.e., cancer. Specifically, it affected the base of his tongue.
The type of basal cell carcinoma that Paul had is caused by the human papilloma virus (HPV), a virus that only recently has been implicated in various forms of head and neck cancer. Most of us who are of reproductive age are carriers of HPV but don't know it. HPV has least 120 different strains, some of which cause no problems, some that cause minor problems such as warts on the hands or fingers, and then some that cause cancer. The particular strain that is most closely related to cancer of the mouth and neck (oropharyngeal cancer) is HPV 16, and it was this variety that Paul had. Interestingly, Paul learned of a few prominent individuals who had been diagnosed with the same form of cancer, including former Orioles baseball pitcher Mike Boddicker and Gary Bovyer, principal clarinetist of the Long Beach Symphony, the Hollywood Bowl Orchestra, and the Santa Monica Symphony.
Doctors presented several options to Paul, none of which were particularly desirable, particularly from the perspective of a horn player wanting to continue his career. Paul points out that musicians must serve as their own advocates, thoroughly questioning and understanding the consequences of any course of treatment on their ability to continue performing. He relates that in his case " ... the medical community was less concerned about sustaining my career than getting the cancer," and thus, some of the options were simply unacceptable to Paul. Accordingly, the first procedure that was recommended was surgery; a procedure that would have been career-ending, involving the removal of part of his tongue. Such surgery would obviously have had profound effects on his playing, so despite its favorable prognosis with respect to eliminating the cancer, Paul staunchly rejected the surgery.
Two other normally prescribed categories of treatment involve chemotherapy and radiation therapy. The medical staff wanted to be very aggressive in this regard, and they first recommended powerful heavy metal chemotherapy involving platinum-containing drugs such as cisplatin. These drugs essentially make it impossible for the targeted cancer cells to duplicate their DNA and replicate themselves. This eventually leads to cell death. These drugs essentially make it impossible for the targeted cancer cells to duplicate their DNA, and this eventually leads to cell death. Unfortunately, the side effects of many of these drugs include such things as severe ringing in the ears (tinnitus), permanent loss of hearing, and nerve damage that causes a loss of sensation and effective movement control. With respect to radiation therapy, modern techniques allow for effective killing of targeted cancer cells by destroying their DNA. Unfortunately, one of the side effects of using radiation therapy when the head and neck are involved is that salivary function can be severely impaired. Because the cancer was localized on the base of Paul's tongue and in one particular lymph node, Paul and his doctors opted for a combination of radiation therapy targeting the affected tissues and chemotherapy using a drug thought to minimize side effects. Though this course of treatment was not as aggressive as some others, Paul was determined to give it a try in the hope that he might be able to retain his ability to perform on horn.
A collateral issue that occurs with radiation therapy of the facial area concerns the teeth. Paul was told that there can be no concurrent dental issues when irradiation occurs because of complications that can result. Any suspected issues with the roots of the teeth must be resolved prior to treatment, and in Paul's case, this involved the pulling of one of his teeth, the first bicuspid (third tooth back from the upper front tooth). This was not without consequence. Paul says that he noticed problems right away. His airflow was adversely affected, primarily impairing his slurs between certain notes and his ability to play in the upper register above g". To remedy this, an implant was prescribed, but because of delays in getting the surgery done, he had to struggle through several performances. Once done, the implant remedied the trouble.
Obviously, the cancer treatments took time, and Stevens was required to obtain leaves of absence from his varied professional playing obligations. The time frame that was suggested involved seven weeks of treatment, with chemotherapy being administered weekly and radiation treatment occurring five days per week. In total, 7 chemotherapy treatments and 35 radiation treatments were followed by a full six weeks of recovery during which Paul could not play at all. When he did resume playing, it was very slow going, but he eventually recovered, and thankfully, the treatments were successful in defeating the cancer. However, the successful treatment has not been without some difficult consequences.
Initially, Paul lost his sense of taste altogether. This common side effect lasted about six months, but has since resolved. More important to his horn playing, however, Paul has had significant issues with the loss of salivary function. Although he is unaware of the specific salivary glands that were affected (we have several), he estimates that he has lost about 70% of his ability to produce saliva, and that on one side of his face, he has no function at all. The consequences are significant. Stevens says that they are most noticeable during long passages. Normally, when we exhale during playing, our expired air is 100% saturated with water, largely due to the moistness of the respiratory passages and of the mouth which contribute a significant amount of water to the air column. If the amount of available moisture from the lining of the mouth is limited, then whatever moisture that may be there is simply wicked away by the moving air, resulting in an even drier mouth: the horn player's nemesis!
Of course, the longest phrases create the largest problem. Consequently, Paul says that he must drink water as often as possible while playing in order to forestall the problem. In many orchestral works, adequate time is usually available for rehydration, but in symphonies like those of Tchaikovsky or Schumann where rests are few and far between, it is difficult. Further, playing in ensembles like brass quintets, Steven says, also poses problems for the same reason.
One irony Paul related concerns our usual use of rests in music. For horn players, getting rid of water is a constant problem, requiring awkward moments of panic as we twirl, swirl, and dump during tight spots in the music. But for Paul, he has to not only worry about getting rid of water from his horn during those moments of rest, but as he watches those precious droplets hit the floor from his slides, he has to be concerned with getting more water in to his body within the same time constraints. This requires that rehydration be done quickly and efficiently, and this has served as Paul's primary approach to dealing with his difficulty. It has obviously been successful, as he maintains an active performance schedule on top of his teaching responsibilities at the University of Kansas.
But drinking water as often as possible is not the only approach to dealing with the loss of salivary function; other options are available. Among these are those that attempt to stimulate salivation or moisten the mouth. Paul has tried several himself with limited success because of the severity of his difficulty, but I will mention several approaches that may be of interest to readers. Of course, we are all aware of foods and gums that require chewing in order to stimulate salivation, but these are obviously unsuitable for horn players. Products that are chemical solutions containing citric acid (the substance that makes our mouth water when we bite into a lemon or grapefruit) are commercially available such as Mouth-Kote (Parnell Pharmaceuticals), and Optimoist (Colgate-Palmolive). In a less sophisticated but practical approach, some players "spike" their water with a little lemon or lime juice as well. Spray solutions also serve as oral moisturizers or salivary substitutes and may help. Among these are Biotine, Salivart, Oralube, Xero-Lube, Orazyme, and Plax. Finally, prescription drugs such as pilocarpine hydrochloride (Salagen: MGI Pharma) and cevimaline hydrochloride (Evoxac: Daichii Pharmaceutical) actually stimulate the salivary glands to increase production and may be effective.
In summary, I would like to thank Paul Stevens for sharing his story with us. His willingness to study, question, and learn as much as possible about his cancer in order to preserve his ability to play horn serves as a wonderful example for all of us.
Peter Iltis holds a PhD in Exercise Physiology from the University of Kansas and teaches in the Department of Kinesiology at Gordon College
by Peter Iltis, Column Editor
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|Publication:||The Horn Call|
|Date:||Oct 1, 2012|
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