Abstract
I have written this article to share my personal experience of enduring the late effects of radiation treatment as a cancer survivor and a clinician. It is my hope that both patients and health care providers will benefit from reading it. My perspective may assist individuals who undergo similar radiation treatments cope better with them and their side effects. It is also my hope that health care professionals who care for these patients will gain insight into what their patients experience and feel so that they will be able to better assist them.
The side effects that emerged during my radiation treatment include fatigue, mental cloudiness, pain and dryness in my throat, food aversion and inability to taste food, skin burning around the neck, and edema and disfigurement below my chin. I was well prepared by my doctors to expect most of these side effects and to cope with them. Happily, as time progressed most of these early-onset radiation side effects diminished in intensity or resolved completely. However, with the passage of time new and lifelong sequelae of radiation emerged.
Following my radiation treatment it was good to experience the gradual return of my sense of well-being and lessening of physical exhaustion. As my energy returned slowly I was able to resume greater amounts of physical activity. My general feeling of malaise and the inability to think and plan ahead slowly dissipated. These improvements correlated and were probably augmented by the subsiding of inflammation and the disappearance of the throbbing pain in my mouth and throat. The process was gradual with ups and downs, and different improvements took from 2 to 6 months to occur.
The lengthy recovery period from irradiation was accompanied by the emergence of a series of newer side effects, many of which will be lifelong. I was forewarned by the radiation oncologist to expect some of them, but I was unprepared and surprised by others I was never told about. When some of the late side effects of radiation started to appear, I became unsettled and unsure what new adverse effect would come next. My physicians avoided responding to my question, “What else can happen to me?” They told me about the major side effects (such as low thyroid gland function and neck stiffness), but I wish they would have been more open and honest with me about all the potential repercussions of the radiation treatment. If they would have provided me with more information, I would have been less concerned and apprehensive when these side effects actually emerged. I had the feeling that they avoided talking to me about all of the potential side effects because they were unable to predict with any certainty which ones I would likely experience and perhaps hoped that I would not have many.
The first new adverse effect that manifested itself about 3 months after the end of the radiation treatment was a sensation of electrical impulses that ran from my lower spine down into my legs whenever I bent my head down. I was very scared and concerned when I first noticed it. I was out of town when I suddenly felt these electrical shocks and, being unaware what they were, I was afraid that they represented a cancer invasion in my spinal cord. I felt them late at night and became terrified when I sensed them. Fortunately, they occurred on the last night of my 3-day trip.
My radiation oncologist diagnosed my symptoms as L'hermitte's syndrome, a complication that can occur in about 10% of patients who receive radiation to the neck or spine area. It is due to damage caused by the radiation therapy to the spinal nervous system. The condition is believed to be due to temporary demyelization of the posterior columns of the spinal cord. These nerves were not functioning well and misfired when stimulated by stretching. My radiation oncologist assured me that no intervention was required, and that the syndrome usually resolves spontaneously over a period of months to one year. I felt a great sense of relief after I heard this explanation.
Although the condition worsened in the ensuing months, it did dissipate over time, but never disappeared completely. A neurologist that I consulted advised me that although the damage to the nerves is permanent, my brain learns to ignore the electrical shocks over time, and they become less noticeable.
The other permanent side effect was the emergence of hypothyroidism. The symptoms of low thyroid gland function were insidious in the beginning, and I attributed them initially to the lingering general tiredness after radiation, but they worsened with time. I became depressed, developed extreme fatigue and weakness, constipation, loss of breath on exertion, and cold intolerance. My thought process was very slow and restricted, I was forgetful, and I lacked interest in anything.
My radiation oncologist advised me not to worry about hypothyroidism until 4 months after the end of radiation, but in my case the condition came sooner—about 10 weeks later. I re-learned what I had already known: that there really are no set rules in medicine, and every individual is unique. After I brought the presence of these symptoms to the attention of my doctors the deficiency in my thyroid activity was immediately diagnosed, and hormone replacement treatment was started. Unfortunately, it took a few months for the symptoms to disappear. This was partially due to the slow nature by which clinical improvement of hypothyroidism occurs and also because the exact dose of the hormone needed for replacement is individual and cannot be predicted.
My treatment was started with a low hormone dose, and a stable equilibrium had to be achieved, which took about 6 to 8 weeks. My blood levels were determined, and the dose was adjusted accordingly when needed. This was a tedious process that took several months before the correct replacement dose was achieved. What complicates the situation even more after radiation is that the process of deterioration in the activity of the thyroid gland may take a few months, during which the required replacement dose increases. It took almost 5 months in my case for the correct daily dose to be determined.
It was hard for me to feel the positive effects of the lifting the veil of symptoms of hypothyroidism that were so disruptive to my life. However, after a few months of patience and perseverance in taking the replacement thyroid hormone and having the dose adjusted to my needs, I began slowly to feel better, and I began returning gradually to my old self.
Neck stiffness was a constant and an annoying result of the exposure of my neck muscles to irradiation. It limited my range of neck motion, and I felt frozen in my position. I tried to break the freeze and regain more motion by exercising and was slowly able to achieve greater flexibility. However, I was warned by my doctors that this was going to be a constant challenge throughout my lifetime as the postradiation muscle stiffness was never going to fully disappear.
I noticed that my vision was also affected. I needed two adjustments of my reading glasses and noticed cloudiness in my field of vision (a sign of cataract development) in the months that followed the radiation. I suspected that the exposure of my lens to radiation generated these changes.
Sixteen months following radiation, I developed high blood pressure that required medication. Although this might have been age-related, there was a strong possibility that this was the result of scarring of the blood pressure sensors that regulate the blood pressure in the carotid artery that runs through the neck, which was exposed to radiation. Another explanation was that the stiff and fibrotic neck muscles exert pressure on the carotid artery sensors.
Indirect support of the last possibility was the fact that my blood pressure returned to almost normal levels 2 years later after I received a newly developed laser treatment that reduced my neck muscle rigidity.
My physical therapist started a series of treatments with a laser beam that was aimed at my stiff and rigid neck muscles. The treatment was very successful and reduced the muscle rigidity, and I was finally able to move my head from side to side almost to the degree that I was able to do before getting the radiation.
The big surprise was that my blood pressure dropped down significantly after this treatment. This was a new and unexpected result for everyone involved. As a result of this treatment, I was able to gradually discontinue most of the blood pressure medications. The likely explanation for the reversal of the high blood pressure was that the reduction in the muscle stiffness decreased the constant pressure these muscles produced on the carotid artery.
Even though I have and will continue to experience late side effects of radiation treatment, I learned to accept them as an unfortunate result of eradication of my cancer. I hope that my perspective will assist individuals who had radiation treatment to cope better with their long-term effects. It is also my hope that health care professionals who care for these patients will gain insight into what their patients experience and feel so that they will be able to better assist them.
