Commentary: How I’m still alive to talk about surviving cancer

The most astounding part of my cancer story might be that I’m still alive to tell it.

For nearly 10 years, doctors misdiagnosed my persistent jaw pain and trismus as temporomandibular joint dysfunction, or TMJ. Nerve damage to the side of my face was deemed a pinched nerve. Sadly, I believed the doctors and learned to live with the pain. That is, until I woke up one evening with such excruciating, stabbing pain in my face that I finally became my own advocate.

An immediate appointment with a neurologist led to an MRI and subsequent biopsy. The results came back quickly and were as severe as my physical discomfort: I had Stage IV adenoid cystic carcinoma, an extremely rare head and neck cancer that affects roughly 1,600 people in the U.S. each year.

With my shocking diagnosis, I received a rapid education in the realities of my cancer. The slow-growing, plum-sized tumor completely invaded my maxillary sinus and everything in its way. It was advanced. It was inoperable. Traditional radiation and chemotherapy had proven ineffective in similar cases. Surgery was not an option.

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Although my type of inoperable tumor was rare, my situation was not. Each year, countless Americans are diagnosed with cancer and given poor prognosis for survival. Traditional radiation therapy can destroy crucial, surrounding structures. Resulting side effects can be devastating. Blindness, deafness, inability to swallow and secondary cancers are a few. Not to mention the long term costs associated with these side effects which further burden both patients and insurers.

I am not the first patient to feel sheer terror upon learning that I have Stage IV cancer. But I hope that I am one of a growing number who – with access to the most appropriate and effective treatment for my diagnosis – will survive, thanks to a treatment option not routinely covered by major insurers.

My diagnosis, as grim as it was, came with a single ray of hope. My faith was strengthened and I was led to MD Anderson Cancer Center, where my medical team explained that proton therapy had offered limited success in treating my type of rare cancer. Though it might not cure me, it would hopefully shrink the tumor enough so I could survive and live a more comfortable life — God willing.

Though proton radiation can target and treat some inoperable tumors like mine, it has also been successful treating other head and neck cancers, prostate cancer, certain breast cancers and childhood cancers. It is noninvasive and completely painless. While conventional radiation functions like a bullet – delivering high-velocity energy that damages the tumor and anything in its path – protons release their energy when they reach the tumor itself and damage only DNA inside the tumor while sparing the surrounding healthy tissues.

Under the expert care of my physicians at MD Anderson — 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. A few residual-yet-bearable side effects are a small price to pay for survival.

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Though my experience was filled with hope, countless other patients’ stories are filled with insurance denials and barriers as a result of limited insurance coverage for proton therapy — because insurers don’t deem it a “medical necessity.” Semantics are being used at the patients’ expense.

My story could have ended much differently. I am alive today to tell my story and advocate for others thanks to the quality care I received and lots of prayers. Without insurance coverage for my treatment, there’s no telling the physical, emotional and financial burdens my family could have faced.

No one’s story should come to an end because a proven, FDA-approved treatment was denied by insurers. I hope my story will help inspire health insurance companies and lawmakers to expand proton therapy coverage when it’s the best treatment option for cancer patients who may have no other options for survival. Lives depend on it. Mine did.

McBurney is a cancer survivor from Lakeway and patient advocate for the Alliance for Proton Therapy Access.

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