Learning that I had hypopharyngeal cancer shook me to my core. I had to accept for the first time that I am not invincible and that life has an end. Suddenly, I was faced with the potential beginning of the end. Even though the small cancer (T1N0M0) in the retropharynx was surgically removed and I received local radiation, I was uncertain about my future. I slowly recovered from the radiation adverse effects and gradually believed that I was actually cured. However, after 20 months I had a local recurrence (T2N0M0) at a different location (right pyriform sinus). Unfortunately, my surgeons were unable to completely remove the tumor by laser after 3 attempts. At that point, I became frustrated and exhausted (emotionally and physically) and elected to undergo complete pharyngolaryngectomy with flap reconstruction at a different medical center with greater experience with this type of cancer. The tumor was completely removed, and no local or systemic spread was noted.
During my postsurgical hospital stays I was able to give my medical caretakers useful input about my symptoms that helped address issues early on. However, this became very difficult once I lost my ability to speak and could communicate only in writing. I prepared a written list of questions, but because some of my surgeons were impatient and always in a hurry, there was rarely a chance for follow-up inquiry. They rarely examined any part of my body except the surgical sites. Nonetheless, I am most grateful to all who cared for me and attempted to help me to the best of their abilities.
Although the medical care I received at all institutions was overall very good, I realized that many mistakes were being made at all levels, some minor but some potentially serious. Fortunately, I was able to abort many of them, but not all. I had to be constantly on guard, which was exhausting. Patients without a medical background are most probably unable to recognize and prevent many of these errors.
Even though my surgeons explained the procedures and their aftermath, I was unable to digest and internalize the information because I was very anxious at that time. I wanted the cancer removed; all other issues seemed insignificant.
I faced numerous and frustrating new realities that included fluid reflux into my mouth; difficulty in swallowing solid food; inability to speak while eating; limited motion and loss of sensation in my neck and left arm; the presence of a “hole” in my neck and a severely swollen neck that looked different without the Adam's apple; repeated coughing to clear my secretions; continuous maintenance of the stoma and the tracheo-esophageal prosthesis (TEP); ordering equipment and always carrying airway supplies; the fragility of my speaking ability; learning how to speak again using the TEP and all the challenges relating to its repeated failures; difficulties being understood because of a weak voice; and often overt or discreet discrimination from others.
I had to learn and adjust to new realities and limitations and battle depression and despair. I continuously reminded myself that all of these difficulties and handicaps were worth the chance to survive a cancer diagnosis. What helped me overcome the difficult times was my wish to set an example to my children that one should not give in to adversity and do everything within one's power to fight back.
I coped with depression by gradually getting reinvolved in activities I enjoy, which include teaching, writing, and lecturing. I had the support of my family and colleagues who accepted me as I was. I was also fortunate to have a supportive local laryngectomee club, a dedicated and caring surgeon, and a supportive social worker.
I was slowly able to return to my previous routines. I started with simple challenges such as learning to take a shower without aspirating water, taking walks, and reading medical literature again, and I gradually became able to ride a bicycle and hike. One of my greatest comebacks was fulfilling my commitment to lecture at the Annual Meeting of the American Academy of Otolaryngology–Head and Neck Surgery.
Experiencing firsthand the difficulties and tribulations of a postlaryngectomy experience showed me how dependent and helpless one can be. Being unable to speak, eat, and breathe normally while dealing with a potentially fatal illness make the patient extremely vulnerable, both physically and emotionally. In this difficult and challenging time, a proficient, competent, compassionate, and caring approach that appreciates what the patient is experiencing should be practiced.
I am sharing my personal experiences in an attempt to convey to health care providers the difficulties and challenges a patient faces after being diagnosed with cancer and undergoing extensive surgical procedures. Hopefully, my experiences will encourage these professionals to better understand and to diligently and compassionately deal with their patients.
Brook I. Neck CancerA Physician's Personal Experience. Arch Otolaryngol Head Neck Surg. 2009;135(2):118. doi:10.1001/archoto.2008.529