Cancer: Head & Neck
“My granular cell tumor was located behind my ear where the jaw, carotid artery, esophagus, brain stem, oral cavity—anything that’s important to me and to living a healthy life—are located. Proton beam radiation would target the tumor and not surrounding tissue, and to me was the clear choice. Unfortunately, my insurance company didn’t agree with me or my team of medical experts and denied coverage.”
At 56, I was living an active life as a freelance writer when I was diagnosed with cancer. My three children were in high school and college, and I was getting ready to celebrate the publication of my first book. The book release date, however, was overshadowed by a cancer diagnosis. A month or two earlier, I had noticed a small growth behind my left ear. It was suspected to be a harmless sebaceous cyst, so I didn’t think twice when it was removed. Weeks later, I was shocked when the pathology report indicated a malignant granular cell tumor, a very rare and intensely aggressive form of cancer.
In search of the best treatment available, I travelled from my home in Lafayette, Indiana to seek evaluation by experts at the MD Anderson Cancer Center in Houston, Texas. Due to my tumor’s location in the complicated head and neck region, and the potential side effects of conventional radiation treatment, my medical team suggested proton therapy, which would minimize damage to sensitive areas surrounding the tumor.
Proton beam therapy is very targeted and the right treatment for my head and neck cancer. My granular cell tumor was located behind my ear where the jaw, carotid artery, esophagus, brain stem, oral cavity—anything that’s important to me and to living a healthy life—are located. Proton beam radiation would target the tumor and not surrounding tissue, and to me was the clear choice. Unfortunately, my insurance company didn’t agree with me or my team of medical experts and denied coverage.
My insurer deemed proton therapy “investigational,” even though proton therapy is FDA-cleared, covered by Medicare, and recognized in the National Comprehensive Cancer Network guidelines for head and neck cancers. The insurer also declared proton therapy not medically necessary for my cancer.
Despite the insurance denial, I recognized the importance of treating my aggressive cancer quickly. To begin treatment when it needed to happen—and not wait the months it would take to get a final opinion from my insurer – my husband and I paid out-of-pocket for proton therapy while going through the appeals process with the insurer. I fought the insurance company on nearly a daily basis, the entire length of my treatment. The denial was ultimately overturned in external review the day before treatment ended. The external reviewer considered the medical details (which I’m convinced the insurer never did), deemed the treatment medically necessary, and the insurer was forced to cover my proton treatment.
While the denial did not really come as a surprise to me, because I had heard of poor insurance coverage for proton therapy, what did shock me was my insurer’s seemingly careless and evasive decision process, its complete disregard for federal regulation, and the numerous inexcusable factual errors made in communication during the appeals process. My insurer termed proton therapy a type of X-ray radiation (they are two completely different forms of radiation). The insurer completely misidentified the requested treatment (citing an MRI instead of proton beam radiation) and wrong part of my body (citing the spine instead of the head and neck). The denial letters were also riddled with grammatical errors that completely discredit the professionalism of the company.
The insurer also violated federal regulation, failing to comply with the mandated deadlines of an expedited review process. It delivered responses several weeks after the required 72-hour response window had passed. I was astounded to learn that there are no penalties for this conduct. Insurance companies have no reason to change their behavior, which is something legislators must address.
With proton treatment now behind me, I am grateful that I had the strength to fight for and win coverage of the necessary radiation, despite an insurer that argued otherwise. My own fight for coverage may be over, but I vow to continue to advocate for fair insurance treatment of other cancer patients, none of whom should be fighting anything other than their disease.
Submitted by: Megan Niese
“I strongly believe it should be the insurer’s duty to help facilitate optimal cancer treatment. The most troubling aspect of Brent’s insurance denial experience is that the additional cost of proton therapy treatment was not much more than the traditional radiotherapy the insurance company had approved. The additional cost would have been a drop in the bucket for a large insurance company. That seems like a worthwhile investment considering Brent is a 23-year-old man in the prime of his life.”
At just 23 years old and while enjoying his final year as a mechanical engineer major at The Ohio State University, battling brain cancer was the farthest thing from my brother’s mind. Neither of us could have imaged a cancer diagnosis and a fight with our insurance carrier for life-saving care.
However, on a seemingly normal day of coffee, classes and studying, Brent suffered a seizure in his house near campus. His roommates acted quickly to get him to the emergency room where a series of scans revealed the reason for his seizure – a brain tumor.
As a healthy, active college student, the diagnosis took Brent and our family by complete surprise. But shock quickly turned into action. Brent and his medical team immediately scheduled surgery to remove as much of the tumor as possible.
To say the surgery was a success would be an understatement. Brent had complete tumor resection and no neurological deficits. He was home after two days and back in class the next week. He never missed a beat.
But elation quickly turned to worry when we learned that instead of being a grade one or two tumor as previously predicted, his cancer was rated a grade three tumor, meaning further treatment would be necessary.
Our family immediately began to seek out second opinions and research treatment options, which led us to the Proton Therapy Center at MD Anderson Cancer Center. Upon his initial consultation with a radiation oncologist, Brent learned that he was an excellent candidate for proton therapy due to his age, previous complete resection and general prognosis.
However, a massive barrier presented itself – our health insurer did not agree with his physician’s expert medical opinion. The insurance company flat out refused to cover proton therapy, because they decided traditional radiation would suffice.
This was the insurer’s immediate and unwavering decision, even though a team of doctors agreed Brent would respond well to proton therapy and research demonstrates a lower rate of immediate and long-term side effects associated with proton therapy. This is an extremely important consideration given the anatomical location of Brent’s cancer, as well as his young age.
While we were fighting the insurance company, the small window of time Brent had to begin his next phase of treatment was closing. We had to quickly decide how to proceed based on the insurance denial.
Having appealed and petitioned the insurance denial to no avail, and with no time to waste, we decided proton therapy was the best course of care to ensure an optimal clinical outcome while also protecting Brent’s quality of life for years to come. Thankfully, as my parents were struggling to determine how they would pay for Brent’s proton therapy, the proton center offered an arranged payment plan so that he could immediately start treatment.
I strongly believe it should be the insurer’s duty to help facilitate optimal treatment. The most troubling aspect of Brent’s insurance denial experience is that the additional cost of proton therapy treatment is estimated at merely $10,000 more than the traditional radiotherapy the insurance company approved. While $10,000 is a lot of money to most, it is a very small investment for a large insurer to make in the treatment of a 23-year-old man in the prime of his life.
Brent, my family and I have no plans to give up. Brent has been handed a diagnosis no one his age should have to face. It is inspirational to watch the way he has carried himself as a resilient and determined young man. We will continue fighting the insurance company to cover the cost of proton therapy while Brent continues to fight cancer. This fight is not only for Brent, but for others who are faced with the same barriers, who ultimately may not be able to proceed with proton therapy – a superior form of radiation therapy.
“My family will recover from the financial hardships of paying out of pocket for the therapy, however there are many more patients without the financial means to fund their own care, and who are dependent on their insurer. That is way too much power outside the hands of patients and their medical professionals. No health insurance company should be able to summarily decide a patient’s fate.”
At 60 years old, I was living a very active life. My husband and I had recently become “empty nesters” and I filled my time by running my own business and visiting the gym daily.
However, that all changed when I went to my primary care doctor with some back pain last winter. An MRI revealed something I never expected – stage three lung cancer that had already spread to my sternum. My doctor scheduled me for surgery that same week.
After the surgery, my husband and I decided to meet with multiple oncologists in the area to explore treatment options. When a doctor at Moffitt Cancer Center explained that I only had a 50/50 chance at survival with chemotherapy, I couldn’t accept those odds. I knew there had to be a better option available – I plan on being around for a while! My search for the best possible outcome led me to the MD Anderson Proton Therapy Center in Houston, Texas.
After meeting with MD Anderson Cancer Center, it was clear that proton therapy was my best chance not only for my survival, but also to preserve the best quality of life after cancer. My insurer, however, deemed the treatment “experimental” and refused to cover it. I was shocked.
I have learned that many Americans with cancer are often denied coverage because insurers deem treatment “experimental.” In my case, United Healthcare, an insurer infamous in the cancer community for denying patients need, refused to cover my treatment.
The employer that my husband has been loyal to for decades, took no action to help us despite multiple conference calls with the treatment center and the employer’s global representative for insurance. The entire appeals process became one frustrating ordeal after the next. We appealed United’s decision three times and the first two were handled by a United physician and the third was handled by an oncologist with no experience in proton therapy, was also rejected.
In the end, I had no choice but to go forward with my proton therapy treatment without the financial support of my insurer. Between the expenses of traveling to Houston, renting an apartment for the 5 weeks of treatment, and the care itself, my husband and I spent over $100,000 to save my life.
My family will recover from the financial hardships of paying out of pocket for the therapy, however there are many more patients without the financial means to fund their own care, and who are dependent on their insurer. That is way too much power outside the hands of patients and their medical professionals. No health insurance company should be able to summarily decide a patient’s fate.
“If I had received proton therapy, I am confident I would not be suffering from these side effects and I would have maintained a much higher quality of life during and after treatment. Insured patients should not have to pay the price for insurers who care nothing about a patient’s health and care only about the bottom line.”
I was 58 years old and had retired from my career in law enforcement when I was diagnosed with human papillomavirus (HPV) related oropharyngeal cancer — cancer on my throat. I asked my local ENT doctor about my treatment options and sought out the opinion of cancer experts at MD Anderson Cancer Center in Houston.
After examining my case, doctors at MD Anderson decided I was a good candidate for proton therapy because of the location of my cancer – positioned near my esophagus, thyroid, brain stem and other vital, healthy tissues. Learning about proton therapy, I was optimistic about the clear benefits, including protecting healthy tissues from excessive radiation and maintaining my quality of life during treatment. When I heard from my insurer, my optimism faded.
Although I had two seemingly good health insurance policies – one for my retirement from the police force and one with my new employer, both underwritten by the same company – I was flat out denied proton therapy treatment. I started the process of appealing my insurer’s decision, even winning my first appeal after they denied payment because they defined proton therapy as “experimental.”
But my insurer fought back, this time claiming there was no evidence that proton therapy was a better treatment option than (less-expensive) traditional radiation therapy. I tried going directly to my primary insurer to plead my case – this resulted in a telephone conversation with a nurse representing the insurance company, which was a total waste of time. The nurse confirmed my suspicion: that the insurer wasn’t concerned at all about my health 10-15 years down the road, they only cared about their short-term costs. “Who knew if they would even be my insurer in 10 years?” she said. In other words, my medical needs might be someone else’s problem, not theirs.
I thought, well just maybe my secondary insurance will step up and assist me, but that was also a dead end as my secondary insurance was the underwriter of my primary policy.
Time is not a friend to cancer patients. I was exhausted by the insurance appeal process and felt I had no other choice, so I proceeded with traditional radiotherapy treatments.
Today, my thyroid is shot. I am on thyroid medications and will be for the rest of my life. As a result, my metabolism has declined, I have gained weight and I am tired all the time. And I missed eight weeks of work while undergoing treatment.
While I am nine months cancer free, I still have a huge level of frustration. If I had received proton therapy, I am confident I would not be suffering from these side effects and I would have maintained a much higher quality of life during and after treatment. Insured patients should not have to pay the price for insurers who care nothing about a patient’s health and care only about the bottom line.
“Upon my diagnosis, I had one mission: to fight this cancer with everything I had. Little did I know, not only would I be waging a war on cancer, I would be battling my insurance company in order to access proton therapy and save my own life.”
Melba Fujiura loves barbeque. Not only is she a member of the Pacific Northwest Barbecue Association, which sanctions competitions from Canada to California, she’s also taken classes to become a certified barbecue judge. Even while undergoing proton radiation treatments for lung cancer, she managed to squeeze in time to judge a competition, using her taste buds and expertise to find some of the best barbecue in the region.
“It was a Saturday; I had a proton treatment in the morning, then ran off to judge a competition in Stanwood that afternoon.”
Like good barbecue is a combination of heat, sweet, tang and smoke, Melba’s patient journey has been a combination of hope, fear, determination and support.
The Sunnyside, Washington, resident was first diagnosed with stage one lung cancer in 2015. She was quickly wheeled into surgery at UW Medicine, where they cut out a lobe and hoped they got it all. But a year later, during one of her quarterly checkups, more cancer was found. Again, she was scheduled for surgery, but further tests showed she was not a good candidate for that treatment. Despair set in; was it hopeless?
Her UW Medicine thoracic surgeon, Dr. Michael Mulligan, moved into action. He reviewed her chart, and recommended a consultation with SCCA Proton Therapy Center’s Dr. Ramesh Rengan to see if proton therapy would be a good option.
“He didn’t mess around—he called Dr. Rengan and got us in that very afternoon, and he gave us a lot of hope. It was a blessing he saw us so fast so we didn’t have to spend time worrying unnecessarily.”
For the six weeks of daily proton therapy treatments, Melba bunked at UW Medicine’s low cost patient housing, and took UW’s free bus to her concurrent chemo treatments. A parade of supporters took turns driving her to the proton therapy center in north Seattle for her quick daily radiation treatments.
How is she doing today? “I feel great now. They are thinking the cancer is all gone, and so far, it looks good. And I had few side effects; the chemo caused neuralgia and hair loss, but the only side effect from the proton therapy was some fatigue.“
Regarding her experience at the proton center, Melba has only positive things to say: “I couldn’t have asked for better treatment, you could tell they really cared. If you go to a doctor, it’s really disheartening if they don’t care, or if they act like you’re just another number. But at the proton therapy center, they were kind, got to know my whole family, and made the treatments a breeze. It took longer to change my clothes than to get the treatments!”
Unfortunately, Melba’s insurance outright denied paying for her physician recommended proton therapy. Luckily, her care team was able to make arrangements so she could receive treatment as her survival, health and well-being were the most important factors in choosing proton therapy. So while her cancer battle is over, Melba and her proton center are still wrestling with her insurance company over payment.
However, Melba has zero regrets about choosing proton therapy. “I had a friend who was diagnosed with cancer about the same time, and he went with traditional radiation. He had many more side effects than I did. I feel very lucky that Dr. Mulligan recommended proton therapy to me.”
She’s back to barbecue judging, looking for that perfect combination of tastes that spell satisfaction, and is glad she found the combination of treatments that spell health.
Age: 44 (at diagnosis)
Cancer: Adenoid Cystic Carcinoma (ACC)
“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.
“Proton therapy was the only curative course of treatment in my cancer journey that would not put me at risk for losing an additional 30 percent of my vision. Proton therapy took my vision loss risk from 30 percent to just three percent. For me, it was my only chance of ensuring I could watch my children grow up.”
As an endurance athlete, Brad spends many hours a week training for marathons and Ironman events. When he’s not running, he enjoys spending time with his wife and young children. So it’s no surprise, that cancer was the furthest thing from his mind four years ago.
However, a host of odd symptoms including an intense sense of déjà vu and a strange taste in his mouth even when he hadn’t eaten, led Brad to consult a neurologist. As an athlete acutely in tune with his body, he knew something was not right physically.
Initially, his neurologist pegged his symptoms to a form of epilepsy, but an MRI revealed a baseball sized tumor located on the right side of his brain.
At 31 years old, with a wife and new baby, and in peak athletic shape, the news came as a complete shock to Brad and his family.
Brad’s neurologist laid out three options to treat the tumor:
- Wait and watch
- Perform a biopsy on the tumor
- Remove as much of the tumor as possible
As the tumor was diffused across his brain, chemotherapy and traditional radiation were not viable options. Brad and his care team opted for option 3 and immediately scheduled surgery.
One month after diagnosis, Brad emerged from a successful surgery that strategically removed 95 percent of the tumor and returned home after a short hospital stay. Despite changes to his vision, Brad returned to his normal activity level just six months after his surgery, thanks to the support of an excellent care team.
Just a year following surgery, Brad could race again and competed for the first time in over a year at a local 10K, for which proceeds raised went directly to cancer research.
Shortly thereafter, however, a quarterly scan revealed that the remaining five percent of the tumor left in his brain during surgery had begun to grow. Brad’s case was sent to a panel of experts at Barnes-Jewish hospital, known as the “Tumor Board,” who decided proton therapy was the best course of action to defeat his cancer once and for all.
Proton therapy was the only curative course of treatment at this point in Brad’s cancer journey that would not put him at risk for losing an additional 30 percent of his vision or adversely affecting his quality of life, which he and his care team had worked so hard to rebuild. In fact, proton therapy took the risk of vision loss from 30 percent to just three percent.
Brad’s proton therapy was complemented with oral chemotherapy and traditional radiation. The care plan allowed him to keep working, running, and enjoying time with his young family while undergoing treatment.
His proton therapy radiation treatment proved successful and removed the five percent of the tumor left behind by surgery and, so far, there is nothing to indicate his cancer’s return. Other than the initial vision loss he experienced as a result of his surgery, Brad lives with no side effects following proton therapy and continues to enjoy his life as a competitive athlete, accomplished professional, and loving family man.
After having weathered the storm, Brad’s goal is to be the first person to live to 100 years having been diagnosed with brain cancer at 31. After four years of living cancer free and with a healthy lifestyle and continued optimism, Brad is surely on the right track.
Age: 30 (at original diagnosis bladder ca), 37 (diagnosis of lung ca)
“The location of my cancerous lymph node made me an ideal candidate for proton therapy because it limited excessive amounts of radiation to my heart and esophagus – which can lead to damaging side effects that have significant physical and financial consequences over time. During my seven-week treatment course of proton therapy, I experienced little discomfort, limited to a sore throat when swallowing. Today, I am living cancer free with absolutely zero side effects.”
You’ve heard the old saying when referring to any kind of journey, “Remember this is a marathon, not a sprint.” And this saying couldn’t be more true for Chuck Martinez, a two-time cancer survivor and running enthusiast, thanks to access to proton beam radiation therapy.
First diagnosed with aggressive bladder cancer at the young age of 30, Chuck underwent immunotherapy and had his bladder reconstructed. The treatment worked and Chuck was declared cancer free.
However, the good news didn’t last long. Just a few short years later, his urologist found a mass on the lower portion of his right lung. Immediately, Chuck underwent surgery to remove the entire middle portion of his lung and thankfully, the surgeons were successful in removing all of the physical tumor, but to be sure the cancer was gone, they recommended he undergo an aggressive round of chemotherapy.
Chuck and his wife decided to seek a second opinion at MD Anderson Cancer Center as his wife’s employer had an excellent insurance plan that allowed for complete cancer care coverage. His oncologist ordered a battery of tests, which revealed a lymph node that tested positive for the same form of cancer in his lung.
Chuck’s disappointment quickly turned to hope when his oncologist informed him he was an excellent candidate for proton beam therapy- a treatment he had never heard of before. The location of the lymph node is his chest made him an ideal candidate for proton therapy as traditional radiation therapy exposes the heart and esophagus to excessive amounts of radiation- which can lead to damaging side effects that have significant physical and financial consequences over time.
The oncologist and multidisciplinary medical team quickly devised a treatment plan.
Within weeks of his first appointment, Chuck began his proton therapy. During his seven-week treatment course, he experienced little discomfort, limited to a sore throat when swallowing. To bolster the effectiveness of the proton treatment, Chuck also received a course of chemotherapy and, as result, experienced mild fatigue and queasiness.
However, for the most part, life during his seven-week treatment went about as usual and Chuck felt back to normal within two weeks of his treatment ending.
Chuck has now been cancer free since 2007.