I am a survivor of a grade 3 anaplastic astrocytoma in my right cerebellum diagnosed in 2002. After resection of a small amount of brain tissue, I received 59 Gy of fractioned radiation over 33 days and then oral temozolomide taken on a 5-day cycle once per month for 12 months. Thirty-six MRIs later, all continues to be stable with Wallerian degeneration and shrinkage of my right cerebellum. I went back to work two weeks after surgery, worked throughout my treatment, and continue to work now.
Like many people with cancer, once diagnosed, I embarked on a crash course on what I was up against and what I could do to try to stay as healthy and as functional as possible. I read insatiably and was a proactive partner in my care. During the 6 years since my diagnosis, I continued to experience progressive problems with episodic fatigue, working memory, multitasking, attention, and processing speed. I was working all the time to maintain productivity, but it was taking me a long time to get things done right. I sought out the best care and, despite my incessant problem-solving approach, found myself coming to the realization that I might just need to accept my new normal. Acupuncture visits helped me greatly in terms of symptom management for persistent fatigue, but I thought searching for a cause in Western science and curing these problems was the preferred long-term approach.
My efforts to establish my dream team2
and continue to improve my health and life after treatment are described below. These providers, all the best in their respective fields, gave me the optimal standard of care. Despite their best efforts, I was not improving and nearly settled for the status quo. Here are the consultants I visited to address my post-treatment symptoms in my ongoing search to get back to normal, not just live with a new normal:
- For my cognitive complaints, the neuro-oncologist who directed my brain cancer care referred me to a speech pathologist who tested me and, despite the cognitive symptoms that I reported and experienced in everyday life, told me I was “normal” and “not to worry.”
- Subsequently, I consulted a neuropsychologist at a leading cancer center where in a 30-minute evaluation she was able to document problems in memory, processing speed, and executive function. I received a summary of helpful accommodations and advice to reduce some of my commitments, which would have been helpful if I were not a workaholic.
- Next, a psychiatrist with expertise in medication for adult cancer survivors with cognitive problems prescribed methylphenidate. This medication improved my attention, processing speed, and ability to multitask, enabling me to work longer and more efficiently.
- My personal internist observed that my blood pressure was significantly elevated after starting the methylphenidate. Concluding there was a possible link between the stimulant and elevated blood pressure, I immediately stopped taking the drug.
- At the suggestion of my internist, I consulted another psychiatrist who prescribed a subclinical dose of Paxil. This medication helped manage my distress, but over time contributed to weight gain and fatigue. I continued to take it because it did seem to help my mood and stress levels.
- Approximately 3 years after my initial treatment, I saw a neurologist who diagnosed me with cerebellar cognitive-affective syndrome. I was hopeful that the answer might be found in a medication used for narcolepsy (modafinil) reported to be promising for cognitive limitations and fatigue in cancer survivors. I reduced the prescribed dose by half because I was concerned that it would keep me awake, but the half-dose resulted in my wakefulness for 2 days.
- I saw an ophthalmologist for blurry vision that I thought might be related to my tumor or its treatment, but a careful examination revealed that my symptoms were simply related to dry eyes. The ophthalmologist recommended drops, which relieved dryness but had no effect on blurriness.
- I then consulted a neuro-ophthalmologist who, after a comprehensive evaluation, concluded the blurriness was not related to brain tumor or treatment.
- An audiology consultation for what I perceived to be a progressively worsening hearing loss was completed. There had been a few studies on sensory loss in brain tumor patients after treatment with radiation and chemotherapy, and I feared that because my radiation was aimed at my cerebellum and my right ear was in the treatment field, the cause could be treatment-related.
- Continuous surveillance of my brain tumor revealed a stable MRI. However, I continued to experience persistent symptoms.
I had many consultations, with no single provider coordinating care. Coordination was left to me. I was fortunate, however, as I sought out highly knowledgeable and clinically skilled experts in their fields. They were responsive and provided first-rate quality care in their specialties. However, my overall care was fragmented, which is illustrative of how the health care system currently responds to the needs of cancer survivors.