“Under the expert care of my physicians— and thanks to our employers’ self-funded insurance policy — I began proton treatment without delay. Miraculously, today I am cancer free. Proton therapy killed a cancer that should have killed me.”
Survivor. That is how Cathleen McBurney describes herself. Thanks to access to proton beam radiation therapy for her cancer, Cathleen is a hard-working and passionate advocate for cancer patients.
Cathleen endured a 10-year misdiagnosis of severe temporomandibular disorder, commonly referred to as TMJ, and “a pinched nerve,” for pain and numbness she experienced in her jaw and the [right] side of her face. She was repeatedly brushed off by her primary care physicians, which led to increased frustration and no remedy for her pain. She resigned herself to living with the pain, accepting her new normal.
In April 2013, on her mom’s 70th birthday, she experienced severe pain that felt as if she were being stabbed in her face and jaw repeatedly. She knew at that moment that this wasn’t simply TMJ or a pinched nerve. At that moment she decided to be her own advocate and immediately sought the help of a neurologist. A simple test revealed obvious nerve damage, and it was through an MRI that Cathleen’s tumor was discovered. Her physician ordered a biopsy of the tumor, which revealed Cathleen had Stage IV Adenoid Cystic Carcinoma (ACC), an extremely rare Head and Neck cancer that affects approximately only 1,600 people in the US each year.
Cathleen had a slow growing tumor approximately the size of a large plum in her maxillary sinus cavity, which was the cause of the pain she had been experiencing for a decade. The tumor was blocking her jaw movement and had invaded her trigeminal nerve, the source of the nerve damage and numbness.
Due to her tumor’s size and internally invasive nature, Cathleen was told her tumor was inoperable. Surgery would have completely destroyed her entire facial and nerve structure. On top of that, she and her family learned that traditional chemotherapy and radiation had proven unsuccessful in treating advanced ACC, leaving Cathleen wondering if she had any hope of survival at all.
Her primary oncologist, Dr. Ehab Hanna [at MD Anderson Cancer Center] introduced Cathleen and her family to proton beam radiation therapy, a treatment option that had had some limited success with her type of ACC. The number of cases could be counted on two hands. Knowing this was her only option for beating cancer, Cathleen and her family immediately concurred and met with Dr. Steven Frank at the Proton Therapy Center that same day.
Cathleen’s treatment team was hopeful that proton therapy would offer her a treatment option that would decrease the tumor size, relieve her pain and improve her jaw mobility – essentially treating her ACC like a chronic condition, for as long as she might live. Based on other ACC cases, this would have been considered a success. However, Cathleen and her family, along with her impassioned radiation oncologist, still hoped for more, a cure.
During treatment, Cathleen did experience pain in her mouth and was unable to eat for several months during and after treatment. She was, however, able to tolerate water and nutritional drinks with a lidocaine swish, so she lost very little weight (approximately 10 lbs.). She never had to use a feeding tube, and about 75 percent of her taste buds are fully functional. While she did lose her sense of smell, she says it is of little consequence to what she gained – her life.
Overall, Cathleen has no visible evidence of cancer treatment at all. While doctors warned she may lose sight in her right eye – the tumor was sitting on the optic nerve – she maintains 20/20 vision today. When she lost her hearing, they said it wouldn’t come back. It did and she has no hearing issues today. The long term side effects of proton therapy for Cathleen have proven minimal in comparison to the lasting effects of traditional radiation.
Unlike patients who receive traditional radiotherapy, Cathleen did not experience many of the common side effects associated with other forms of radiation therapy in Head/Neck patients including problems swallowing, severe dry mouth, visible scarring and permanent hearing damage. Following treatment, Cathleen only requires a single medication for facial nerve pain that she experienced prior to her proton therapy treatment.
Cathleen is confident that her long term medical expenses will be small in comparison, because of the minimal side effects associated with the proton therapy treatment she received, which she points out is something insurers should recognize and consider when evaluating coverage.
Cathleen was very fortunate that her husband’s self-covered insurance plan carried the cost of her proton treatment, meaning she faced no barriers or delays in care, unlike so many cancer patients. Not all patients in need of proton therapy are as blessed. Cathleen believes that access to care and lack of awareness are some of the biggest burdens facing the proton community and cancer patients. She hopes her story can help change that.
Throughout her cancer journey, her family and her faith help her stay strong. Cathleen battled cancer once again, after a metastasis to her liver this past summer. However, she now shows no evidence of disease in either cancer site. Today, Cathleen is a proton advocate, a volunteer, a writer (cathleenmcburney.blogspot.com), a speaker, a wife, and most importantly a mother. And, thanks to her faith and proton therapy, she is a survivor.