I think my age and apparent good health contributed to a delay in my diagnosis of glioblastoma multiforme. The first symptom I had of the cancer appeared on December 26, 2014, when I was 32 years old. My family and I had just gotten home from celebrating the Christmas holiday with our relatives when I suddenly became dizzy and felt a weakness and a sensation of pins and needles in my left leg, which became so pronounced that I lost my balance and fell to the floor.
Adam Hayden
I never passed out, and the incident was over in about 10 minutes. At the time, I was working on my master’s degree in philosophy of science; I thought I was just stressed and tired from the end-of-semester workload and all the holiday festivities and dismissed the episode.
Three months later, as I was walking across my college campus to get to my next class, I had the same dizzy sensation and weakness on my left side. This time, I felt scared and knew something was wrong. I stumbled to a bench and called my wife, Whitney, who is an occupational therapist, and made an appointment with my primary care physician for a physical exam. The doctor thought the problem could be benign paroxysmal positional vertigo and prescribed a series of tests to induce dizziness to determine a cause, but they failed to bring on the symptoms I had been experiencing. Although episodes of dizziness and left-sided weakness continued to plague me throughout that year, my doctor did not seem overly concerned, so I decided to just ride them out.
Learning the Truth
Over the Thanksgiving holiday, I had an allergic reaction to something I ate and was taken to the emergency room, where I was given prednisone and antihistamines to reduce the swelling in my face and mouth. I was instructed to have a follow-up visit with my primary care physician. When I met with the physician-on-call, I told him about the symptoms of dizziness and left-sided weakness I had been experiencing. I’ll never forget his next words. “If there was something seriously wrong with you, you’d be in much worse shape.” Because I was young and in seemingly good health, my symptoms were dismissed.
The incidents of dizziness and weakness on my left side continued into the spring of 2016. They were increasing in frequency and ferocity to the point that I became nearly paralyzed on my left side during these episodes. Finally, my primary care physician ordered a magnetic resonance imaging scan of my brain, which revealed a 7-cm mass in my right parietal lobe. Even before the tumor could be surgically removed and evaluated for disease, the neurosurgeon warned me that it looked aggressive, even calling the tumor “mean looking.” Those words have stayed with me to this day.
Coping With Terminal Cancer
During surgery to remove the mass, I was awake to preserve as much of my neurologic function as possible. The surgeon was able to remove 96% of the tumor. The final diagnosis did not come until several days later, and it was grim: isocitrate dehydrogenase (IDH)-mutated glioblastoma multiforme. Although the news that I had a serious cancer was, of course, distressing, even terrifying, it was not totally unexpected; in fact, in some ways, it was reaffirming. Despite reassurances from the doctors I had seen over the previous year and a half that my health was good, in my gut I knew that what I was experiencing was not normal. Now, I had to deal with the aftermath.
The surgery left me with limited use of the left side of my body. I was admitted to a rehabilitation facility to help me regain some function in my left arm, hand, and leg.
Remaining Hopeful
Before my diagnosis, Whitney and I had never heard of glioblastoma multiforme. Now, we were facing an aggressive cancer, one that most patients do not survive longer than 12 to 18 months. With three young children to raise, we’ve had to learn how to continue living in the present while preparing for whatever the future holds.
The one piece of information that has kept me hopeful during this time is hearing my oncologist say that my type of glioblastoma has many positive prognostic indicators that improve survival outcome, and I’m holding onto that hope.
A 6-week daily regimen of temozolomide and radiation therapy followed by 11 months of maintenance temozolomide were successful in reducing the size of the remaining tumor and in keeping it stable for 4 years. Although I still suffer from weakness on my left side and persistent focal seizures and have had to contend with several radiation-induced brain microhemorrhages, my health remains relatively good, and I was able to complete my degree and continue my academic career.
Trading Length of Life for Quality of Life
The experience of outliving the dismal prognosis of this cancer has left me with survivor’s guilt and propelled me into patient advocacy to help others living with a life-threatening cancer. I’m a member of the American Association for Cancer Research Scientist Survivor Program (www.aacr.org/patients-caregivers/patient-advocacy/scientist-survivor-program/), and the experience has been humbling and rewarding.
I am grateful that my oncologist and the members of my medical team have always been honest with me about my prognosis and have never tried to sugarcoat my situation. Cancer takes away your sense of control. Having a clear understanding of what to expect in the future gives you back some of that control.
Length of life is not always a top priority for people with a terminal illness. I would gladly trade more time for better quality of life. Despite the seriousness of my illness, I remain optimistic about the future. I know through my patient advocacy that research in more effective treatments for glioblastoma is happening at a quickening pace. Those advances may not happen fast enough to change the trajectory of my cancer, but it is comforting to know they will be there for future patients.
Mr. Hayden is a research assistant in the Department of Philosophy at Indiana University-Purdue University, Indianapolis. He lives with his wife, Whitney, and their three children in Indianapolis.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.
