This essay presents my personal experiences dealing with the aftermath of being diagnosed and treated for throat cancer. As an infectious diseases physician for 40 years I had extensive experience in treating patients with malignancies. However, when I was exposed to new, different, and challenging experiences as a neck cancer patient, I had to deal with these as a patient; not as a physician.
I realized that once one had been diagnosed with cancer and even when it had been successfully treated, it was difficult and close to impossible to completely free oneself from the fear that it may come back. Some people are better than others at living with this uncertainty, and those who adjust well to this reality end up being happier and are more able to go on with their lives than those who do not.
I experienced the fear of recurrence since I was diagnosed with throat cancer that was diagnosed and treated with local excision and radiation. My fear actually materialized when I had a local recurrence 20 months later that required laryngectomy. Even though I religiously followed my surgeon's recommendations and was examined once a month and had diagnostic PET and CT scans, all of these failed to detect the recurrence until the tumor was large enough. I learned the hard way that all these scans and even the examiners' eyes have their limitations. PET and CT can only detect cancer that is larger than one centimeter and physicians can miss a small lesion that is located at a difficult to visualize site.
Even though my surgeons assured me that the laryngectomy removed all cancerous tissues and that my chances for recurrence and spread were small, my anxiety and fear was not gone and the worry that I was not cured was hanging over me. I was afraid to make long-term plans such as out of town trips or repairing my house. When confronted with a simple task such as responding to my mail, writing a manuscript, or fulfilling a promise, I tried to do it promptly in case I got sick again.
Once a month I visited the Otolaryngology Clinic for an examination of my throat using an endoscope and had PET and CT scans every 3 months for the first year and less often later. As the date of the scheduled scans approached, I always became nervous. After the scan was complete, I anxiously waited for the results. On several occasions, these tests showed worrisome findings that necessitated further studies; and in other instances, they manifested inconclusive results that had to be monitored until the next scans, planting a seed of uncertainty in my mind. Whenever the scans did not show any new abnormality, I felt great relief and that I had been granted a temporary lease on life until the next tests were done. My life became a series of 3-month intervals of relative calm until the next set of scans.
I was eventually told by my otolaryngologist 16 months after my last surgery that there was no need to repeat the scans so often because they were stable and did not show any ominous signs of cancerous spread. He explained to me that there is no scientific evidence that repeating the scans at 3-month interval improves survival and it is just a waste of medical resources. What he was also attempting to tell me without actually saying it was that if the cancer did spread to other locations in my body there was little that could be done to combat it, and knowing about it earlier would not change the outcome.
I was hesitant to accept this message. I had become so used to the 3-month cycle of scans, which had been actually recommended by my physicians because of suspicious findings that eventually disappeared. I had to accept the reality that I would always have to live with the threat of cancer's return and that physical examination and vigilance would be the best way of monitoring my condition. Accepting this was difficult, but eventually it partially freed me from the endless cycle of scans that was accompanied by anxiety prior to the tests and temporary relief after the results came back negative.
Whenever I experienced new medical problems or symptoms, I was afraid of the worst-case scenario. For each ailment, regardless of its severity, my mind jumped to the conclusion that the problems were the result of the cancer spreading locally or systemically. This snowballing of anxiety and worry was only relieved after I underwent thorough medical evaluation, including radiological and other studies. After so many close calls, I refused to let down my guard and trust that the cancer was gone.
When I shared my anxiety with my otolaryngologist, he told me that my attiude is common to many other patients with cancer who keep living through these stressful events for the rest of their lives. They suspect cancer to be the culprit of every new physical, radiological, or laboratory finding. “You will have to learn to live and better cope with this reality,” the otolaryngologist said.
I have not yet reached the stage where my fear and worry are gone. I guess I will never be completely free of them, but perhaps living with the uncertainty will get easier over time. Being vigilant and getting to the bottom of each problem is actually a positive thing and should be encouraged. It can lead to better treatment and early detection of recurrence and spread. However, a healthy compromise between the anxiety and the reality is important so that one can go on with life.
What helps me cope with my worries is that I try to first wait a few days before I seek medical help unless it is an urgent problem. I am happy to say that the majority of my problems and symptoms seem to go away within this time. I also learned not to panic but to use my past experience and the knowledge that I had gained about my illness and try to rationalize and understand what I feel and experience. When I do that I can generally calm myself down by understanding that what I have is expected and is not serious and wait patiently for my next appointment with my doctors.
I hope that I will get better at coping with the uncertain future over time, and will learn to accept it and live with it and strike a balance between fear and acceptance.
