Dr Itzhak Brook
This manuscript presents my personal experiences undergoing several surgical procedures including radical neck surgery for removal of pyriform sinus squamous cell carcinoma. This is an in depth expansion of the issues I previously presented [1]. As an Infectious Diseases physician with a special interest in head and neck infections, I had extensive experience in otolaryngological illnesses. 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 e not as a physician. I am telling my personal story in hopes that health care providers will realize the difficult challenges that a patient diagnosed with cancer and undergoes extensive surgeries must face.
Facing the diagnosis of cancer
I was shaken to my core, when I learned that I had hypopharyngeal cancer. I insisted on seeing the pathological specimens myself. I had to accept for the first time that I am not invincible, and that life has an end. Even though I knew it before, I always trusted my body to stay healthy and avoid serious illnesses. As I grew older, I slowly accepted the inevitability of illness and my ultimate mortality, although I had always hoped that it would occur in the distant future. Suddenly, I was faced with the potential beginning of the end. Despite the fact that the small cancer (T1, N0, M0) was surgically removed and I received local radiation, I was left with uncertainty about my prognosis, because of the possible risks of the cancer spreading or recurring. I slowly recovered from the side effects of radiation (altered taste, inflammation of the mucosa, reduced saliva production, hypothyroidism), and gradually began to believe that I was actually cured. However, after 20 months, a local recurrence was suspected. I was hoping it was not true, but the biopsy was positive.
In facing the diagnosis I encountered two types of physicians: the optimists who saw the cup half full and the pessimists who saw it half empty. I preferred those who told me the truth about the risks, and my prognosis, even when it was not rosy.
Initially, I kept my diagnosis private sharing it only with family and colleagues, because I did not want to show my vulnerability. I was also afraid of being stigmatized and discriminated against. However, once the recurrence occurred and extensive surgery was needed, I broke my silence. I realized that by sharing the truth with others; I would actually be receiving support and sympathy.
Decision about the optimal treatment
Once recurrence was diagnosed my surgeons initially wanted to perform either a partial or total laryngectomy. However, they also considered removing the cancer by laser. I consulted several colleagues about the pros and cons of each approach for my kind of malignancy (T2, N0, M0). Hoping to get rid of the tumor with minimal sequelae, I elected to accept the option of laser surgery. I was very grateful to these otolaryngologists, some of whom I had never met who gave me useful information assisting me in making the right choices.
Even though there were centers with greater experience with trans-oral laser microsurgery than the local hospital, I elected to have it done there. I chose this option because the waiting time was short, and I was in no mood to travel. Unfortunately, my surgeons were unable to completely remove the cancer by laser, on three separate occasions within three weeks. After each surgery, the initial message was optimistic that the margins were determined to be clear of cancer by frozen section. However, a few days later I received the bad news that there was still residual cancer. It was a physically and emotionally draining roller coaster experience from the initial feeling of relief; and then downhill to one of disappointment.
At that point, I became exhausted emotionally and physically and frustrated at my unending saga. I began to doubt the competence of my surgeons. By that time, they wanted to perform partial or total laryngectomy. However, I elected to have any subsequent surgery at a different medical center with greater experience with this type of cancer. At that point I agreed to undergo radical surgery because I wanted the most effective procedure that had the highest chance of cure. It took an additional four weeks for the surgery and post-operative recovery. The tumor was completely removed, and no local or systemic spread was noted.
Hospitalization after surgeries
I had not imagined how I would feel after the surgeries. Experiencing pain, weakness, a medicated feeling and inability to eat or drink, I repeatedly dreamt about eating forbidden food. I was rendered completely dependent, staying connected to an intravenous line, needing humidified, oxygenated air and constant suctioning to relieve sudden airway obstruction. I had blood drawn almost daily, and was unable to talk. All of this was extraordinarily difficult to become used to. I understood for the first time why some patients elect to avoid heroic measures to prolong their lives, when their prognosis is poor. This was a new realization as I have always believed in prolonging life as much as possible. I have always tried to practice this principle as a physician. However, I now understand why at a certain point this may not be best for some.
Even though I was appreciative of my family for staying and visiting with me, it was taxing and tiring at times. I was improving and needed time to rest and be on my own. It was especially difficult to deal with those who were anxious themselves and in need of reassurance and calming. Even though they meant well, soon it became a burden.
As a physician it was easier for me to access medical care and create a dialogue with most of my colleagues. I was also more understanding of their shortcomings and appreciated their honesty when they admitted their errors. However, some might have assumed that I understood and knew more about my medical condition than I actually did. I needed to remind them about this on several occasions. I generally received greater personal attention and care from those whom I had worked with before than from those I had not known before.
As a physician, I not only wanted to be informed about my treatment, but needed detailed explanations and differential diagnoses. I also wanted to express my opinion and give my input in areas I was experienced. I was able to provide useful input about my symptoms that helped them to address issues early on. However, this became difficult, once I lost my ability to speak and depend on writing to communicate. Some surgeons were impatient, rushing, and always in a hurry to finish rounds, especially when they had surgeries scheduled. I received the attention of the senior surgeons for only a few minutes each day. They rarely examined any part of my body except the surgical sites and listened to my lungs and heart only when I asked them to. The nurses were also inconsistent about examinations.
I learned to prepare a written list of questions prior to rounds, but there was rarely a chance to write down a follow-up question or request a clarification. This was very frustrating as I anxiously waited to see the surgeons and felt ignored and frustrated at being left with many unanswered questions.
Most senior surgeons and many of the residents were, however, very caring and attentive and some were very compassionate. However, the rushed and impatient attitude that was exhibited by many of the senior surgeons apparently served as a role model to those in training.
I also encountered abrasive and rude physicians. On one occasion, I asked a senior resident to clean my obstructed tracheotomy tube. He reluctantly flushed it using tap water rather than the sterile cleaning kit and water that were routinely used for this purpose. The tube he wanted to place back into my trachea was still dirty, and when I asked him to use the kit and brush the mucus out, he abrasively responded: ''We call the shots here,'' and left my room. I felt humiliated, helpless and angry being treated in this fashion. Even though I reported the incident to a senior surgeon he brushed it away.
Despite these misgivings, I am most grateful to all the nurses and physicians who cared for me and attempted to the best of their abilities. The removal of my larynx and flap reconstruction was flawless, even though I developed a fistula, post-operatively. Most of my caregivers were compassionate, and I could feel their genuine caring. Even though some made errors, I am deeply grateful to them.
Medical errors
Although the medical care I received at all institutions was good overall, mistakes were being made at all care levels. Fortunately, I was able to abort many, but not all. Even though I have practiced medicine for over 40 years in a hospital setting I have never had a chance to observe and suffer the consequences of such errors as a patient. I had great difficulty to correct many of these errors after my laryngectomy because I was unable to speak. However, I realized that I had to be my own advocate and prevent them and make sure they are not repeated.
The first error was when my surgeons, using laser, mistakenly removed scar tissue instead of the cancerous lesion. It took a week before the error was discovered by pathological studies. This error could have been avoided if frozen sections of the lesion, not just of the margins, had been analyzed. I had to undergo an additional laser surgery 10 days later to remove the tumor. I experienced hazardous situations because of nursing errors. One day after my major surgery, while I was still in the Surgical Intensive Care Unit, I experienced an obstruction of my airway and reached for the call button. It was not to be found as it had fallen to the floor. I tried to call the attention of the staff, and even though I was only a few feet away from the nursing station I was ignored, until my wife happened to arrive 10 minutes later. I was helpless in asking for assistance without a voice and was desperately in need of air, while medical personnel passed by. Other errors by nurses and other staff members included the following: not washing hands or using gloves when indicated; taking oral temperature without placing the thermometer in a plastic sheath; using an inappropriately sized blood pressure cuff (thus getting alarming readings); attempting to administer medications by mouth instead of nasogastric tube; delivering an incorrect medication dose; connecting a suction machine directly to the suction port without a bottle of water; and forgetting to rinse the hydrogen peroxide used for cleaning the tracheal tube (thus causing severe irritation), connecting the call button, or writing down verbal orders. The most serious error was prematurely feeding me by mouth a week too early. This continued for 16 hours. Only my persistent questioning brought this to the attention of a senior surgeon. This occurred because of miscommunication of verbal orders. All of these events made me wonder what happens to non-medically educated patients, who cannot recognize and prevent an error. Fortunately, despite these errors, I did not suffer any long-term consequences. However, I had to be constantly on guard and stay vigilant, which was exhausting.
Life after laryngectomy
Even though my surgeons explained the procedures I was to undergo, I was not prepared to face the new reality and the difficulties I encountered. I was unable to digest and internalize these discussions adequately because they were delivered at a time when I was very anxious. I wanted the cancer removed; so all other issues seemed insignificant. I was unable to imagine how it would feel to lose sensation to large portions of my neck, my ability to smell, and above all, to speak.
I had to accept and learn to live with new reality that include: fluid reflux into my mouth after bending forward (especially after drinking); difficulty swallowing solid food; inability to speak while eating; limited motion and loss of sensation in my neck and left arm (the donor flap site); the presence of a 'hole' in my neck (my tracheostomy stoma site); swelling in my neck that now looks different without the Adam's apple; constant need to cough and clear my tracheal secretions; the need to spend time, several times daily, maintaining the cleanliness and patency of the stoma and the tracheo-esophageal prosthesis (TEP, a small tube connecting the esophagus to the trachea); order equipment and always carry supplies to maintain my airway and stoma; difficulties in maintaining a seal that enables me to speak using the TEP; realizing the fragility of my speaking ability; learning to speak again using the prosthesis and the challenges and technical issues relating to its repeated failures; difficulties being understood while speaking with a weak voice, on the phone and in person; inability to laugh or vary my voice to express emotions; and discrimination I have to deal with because of my condition (such as avoiding inviting me to lecture or join a committee).
I have had to accept and adjust to life with new realities and limitations. I continuously reminded myself that all of these are worth the chance I have received to beat and survive cancer.
Learning to speak again
I was told prior to surgery that I will be able to speak using the TEP and met with a laryngectomee patient who used this method of speech. However, I was not told about the pitfalls and difficulties that I may face, and that this method of speaking is imperfect.
The task of talking again was most challenging and frustrating. I was unable to speak for over two months and later wished I had used an electrolarynx during that period. I was fortunate to be guided initially by a knowledgeable speech and language pathologist (SLP). However, when I returned home, I depended on a less experienced local SLP and realized that this field was not only a science, but an art. There were different approaches practiced by different SLPs, which made it difficult to know whose advice to follow.
I soon realized that this was going to be a long process of trial and error, repeated TEP failures due to leaks, and learning how to master the art of sealing the housing of the heatemoisture exchanging filter.
I was determined to overcome these problems, but my local SLP was not responding promptly to my inquiries. I communicated with several other local and out of town SLPs who were extremely forthcoming in attempting to assist me. However, their divergent opinions added to my confusion. To my frustration, I realized that most otolaryngologists were unfamiliar with the management of TEP and relied on their SLP to make most of the decisions. Fortunately, things improved significantly with the passage of time and the reduction of the neck edema.
Dealing with depression
I had to continuously deal with the feeling of depression and hopelessness.
Feeling depressed was strangely helpful and calming when I initially faced the gloomy prospect of pending surgeries and uncertain future. It helped me to accept the potentially poor outcome. Yet, I did not feel immediate depression after the surgeries, because I was focused and determined to get better. The depression, however, recurred and had to deal with my new reality and limitations. This was enhanced by the hypothyroidism and postsurgical anemia I developed.
I was determined to cope with my depression by gradually getting re-involved in activities that I enjoy that include teaching, writing and lecturing. These activities were instrumental in enabling me to feel better. 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 very dedicated and caring surgeon, a talented SLP and an excellent and very supportive social worker, who helped me cope. I discovered the immense potential of tapping into the experience of other laryngectomee patients through an Internet web site (Webwhispers.org). Individuals I had never met assistedmeby responding to myquestions and by sharing their knowledge and even supplies. A true camaraderie exists among people who have been through similar hardships and learned how to cope with them.
I am very aware of the potential of cancer recurrence and spread. I feel apprehensive prior to each of my routine follow-up computed tomography and positron emission tomography scans. I have somehow adjusted to the uncertainty of my future. I still feel confident that I did what was necessary to have the cancer removed, even at the cost of radical surgery and its consequences. I appreciate the future that has been granted to me by my surgeons. Their work has enabled me to experience the joys of life such as the recent birth of my granddaughter and my children's accomplishments. My wish to set an example for my children has helped me overcome the difficult times. I truly believe that one should not give in to adversity and should do everything within his or her power to fight back.
I was slowly able to return to my previous routines. I started with simple challenges such as reading medical literature again, learning to take a shower without aspirating water, and taking walks. I gradually became able to ride a bicycle and to climb a mountain. One of my greatest comebacks was to be able to teach and lecture again with the help of a microphone. I realize that the quality of my voice will never be the same as before.
My experiences as a patient greatly affected my approach to my patients and made me more sensitive and understanding to what they and their family are going through and feeling. I try to avoid the patterns of behaviors that were offending and distressing to me and be more compassionate and caring. I strive to model myself in the pattern of devotion, warmth and genuine care I felt from some of my caregivers. I know now better than before how critical they are. I also realize that by doing that I set an example to the physicians in training and students I teach.
I cannot perform in the same way as speakers with their vocal cords intact can. However, I have discovered that I can find a new meaning and goal to my life that helps me, as well as others. I hope that I can use the set back in my life in a positive way. By lecturing about my experiences and sharing them with other laryngectomee patients and health care providers, others can learn and benefit from my experience. In this arena, my present voice is an asset rather than a handicap.
Conclusions
Facing and living through the difficulties and tribulations of post-laryngectomy has illustrated to me how dependent and helpless one can be after this surgery. Being unable to speak, eat, and breathe normally, while dealing with a potential fatal illness, makes the patient extremely vulnerable, both physically and emotionally. During this difficult and challenging time, a proficient, competent, compassionate and caring approach that understands what the patient is experiencing should be practiced. I learned the hard way that a patient's post-surgical care can be improved by: thoroughly educating the patient and his/her family about the short and long term medical and social implications of the procedures; greater personal attention being given by the surgical team that includes spending more time with individual patients and providing patients who wish to be informed with explanations about their medical care and condition; implementing standard techniques of nursing care, and greater vigilance and better communication among staff to avoid medical errors; and educating surgeons in training about the proper medical and psychological post-surgical care and the special needs of patients after major surgery, such as a laryngectomy.
My hope is that my experiences will help patients, the general public and physicians to reach a deeper understanding of the hardship of being a cancer patient and survivor, and it will encourage medical professionals to deal diligently and compassionately with their patients.
Reference [1] Brook I. Neck cancerea physician's personal experience. Arch Otolaryngol Head Neck Surg 2009;135:118.