"My Voice"

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Psychological issues: depression, suicide, uncertainty, disfigurement, PTSD, sharing the diagnosis, and source of support in head and neck patients


Head and neck cancer survivors, including laryngectomees, face many psychological, social and personal challenges. This is mainly because head and neck cancer and its treatment affect some of the most basic human functions - breathing, eating, communication, and social interaction. Understanding and treating these issues are no less important than dealing with medical concerns. Post traumatic stress disorder (see below) is one of the psychological results of laryngectomy and is more common in females.

Individuals diagnosed with cancer experience numerous feelings and emotions which can change from day to day, hour to hour, or even minute to minute and can generate a heavy psychological burden.


Some of the feelings are:
  •         Denial
  •        Anger
  •        Mood swings
  •         Fear
  •         Stress
  •         Anxiety
  •         Depression
  •         Sadness
  •         Guilt
  •         Loneliness


Some of the psychological and social challenges faced by laryngectomees include:
  •         Depression
  •         Anxiety and fear of recurrence
  •         Social isolation
  •         Substance abuse
  •         Body image
  •         Sexuality
  •         Return to work
  •         Interaction with spouse, family, friends, co-workers
  •         Economic impact






Coping with depression

Many people with cancer feel sad or depressed. This is a normal response to any serious illness. Depression is one of the most difficult issues faced by a patient with cancer. Yet the social stigma associated with admitting depression makes it difficult to reach out and seek therapy.
A lecture about life challenges after laryngectomy including how to cope with depression can be viewed on YouTube.



Some of the signs of depression include:

  • A feeling of helplessness and hopelessness, or that life has no meaning
  • No interest in being with family or friends
  • Inability to communicate
  • Difficulty paying attention
  • No interest in the hobbies and activities one used to enjoy
  • A loss of appetite, or no interest in food
  • Crying for long periods of time, or many times each day
  • Sleep problems, either sleeping too much or too little
  • Changes in energy level and apathy
  • Wide mood swings raging from elation to despair
  • Feeling isolated
  • Changes in sexual desire
  • Thoughts of suicide, including making plans or taking action to kill oneself, as well as frequently thinking about death and dying.


The challenges of life as a laryngectomee in the shadow of cancer means that it is even more difficult to deal with depression. Being unable to speak, or even having difficulties with speaking, make it harder to express emotions and can lead to isolation. Surgical and medical care is often not sufficient to address such issues; more emphasis should be given to mental well-being after laryngectomy. 

Coping with and overcoming depression is very important, not only for the well-being of the patient, but also may facilitate recovery, and increase one's chance for longer survival and ultimate cure. There is growing scientific evidence of a connection between mind and body. Although many of these connections are not yet understood, it is well recognized that individuals who are motivated to get better and exhibit a positive attitude recover faster from serious illnesses, live longer and sometimes survive immense odds. Indeed, it has been shown that this effect may be mediated by alterations in the cellular immune responses and a decrease in natural killer cell activity.

There are, of course many reasons to feel depressed after learning one's cancer diagnosis and, then,living with it. It is a devastating illness for patients and their families, even more so because medicine has not yet found a cure for most types of cancer. By the time the disease has been discovered, it is too late for prevention and, if the cancer has been discovered at an advanced stage, the risk of dissemination is high and the chance of ultimate cure significantly decreased.

Many emotions run through the patient’s mind after learning the bad news. “Why me?” and “Can it be true?” Depression is part of the normal mechanism of coping with adversity. Most people go through several stages in coping with a difficult new situation such as becoming a laryngectomee. At first one undergoes denial and isolation, than anger, followed by depression, and finally acceptance.

Some people get “stuck” at a certain stage, such as depression or anger. It is important to move on and get to the final stage of acceptance and eventually hope. This is why professional help as well as understanding and help, by family and friends are important.

Patients have to face their ultimate mortality, sometimes for the first time in their lives. They are forced to deal with the illness and its immediate and long term consequences. Paradoxically, feeling depressed after learning about the diagnosis allows the patient to accept the new reality. Not caring any more makes it easier to live with an uncertain future. Yet, while thinking that “I do not care anymore “ may make it temporary easier, for a while such a coping mechanism may interfere with seeking appropriate care and can lead to a rapid decline in one's quality of life.





                                        




Overcoming depression

Hopefully a patient can find the strength within to fight depression. Immediately after a laryngectomy individuals may be overwhelmed by new daily tasks and realities. They often experience a mourning period for their many losses, which include their voice and their prim state of health.  They also have to accept many permanent deficits including not being able to speak "normally". Some may feel that they have a choice between succumbing to a creeping depression or becoming proactive and returning to life. A desire to get better and overcome a handicap can be the driving force to reversing the downhill trend. Depression may recur, requiring a continuous struggle to overcome it.  


Some of the ways laryngectomee and head and neck cancer patients can overcome depression include:


  •         Avoid substance abuse
  •        Seek help from your doctor, nurse, or a member of your health care team with whom you feel comfortable      
  •         Exclude medical causes (e.g., hypothyroidism, side effect of medication)
  •         Determine to become proactive
  •        Minimize stress
  •         Set an example for others
  •         Return to previous activities
  •         Talk to a psychologist or social worker
  •      Consider antidepressant medication
  •         Seek support from family, friends, professional, colleagues, fellow laryngectomees, and support groups


These are some of the ways of renewing one's spirit:


  • Develop leisure activities
  • Build personal relationships
  • Keep physically fit and active
  • Social reintegration with family and friends
  • Volunteer
  • Find purposeful projects
  • Rest


Support by family members and friends is very important. Continuous involvement and contribution to others lives can be invigorating. One can draw strength from enjoying, interacting and impacting the lives of their children and grandchildren. Setting an example to one’s children and grandchildren not to give up in the face of adversity can be the driving force to be proactive and resist depression.

Getting involved in activities one liked before the surgery can provider a continuous purpose for life. Participating in the activities of a local laryngectomee club can be a new source of support, advice and friendship. A list of local laryngectomee clubs in North America and throughout the world is available at the International Association of Laryngectomee website.

Seeking the help of a mental health professional such as a social worker, psychologist or psychiatrist can also be very helpful. There are many treatment options available to treat the depression. These include psychotherapy, medications, and transcranial magnetic stimulation. Having a caring and competent physician and a speech and language pathologist who can provide continuous follow-up is very important. Their involvement can help patients deal with emerging medical and speech problems and can contribute to their sense of well-being. 

I found ways by which I can use the set back in my life in a positive way. I realized that I have much to contribute to others. By lecturing and writing about my experiences and sharing them with other laryngectomees and health care providers, others can learn and benefit from my experience.









Suicide among head and neck patients

The suicide rate in cancer patients is twice of that of the general population according to recent studies. These studies clearly point to the urgent need to recognize and treat psychiatric problems such as depression and suicidal ideation in patients.

Most studies have found high incidence of depressive mood disorders associated with suicide among cancer patients. In addition to major and minor depressive disorders, there is also a high rate of less severe depression in elderly cancer patients which is sometimes not recognized and often undertreated.  Many studies have shown that in about half of all suicides among people with cancer, major depression was present, there are other important contributory factors. These include anxiety, lack of social support systems, and demoralization. 

The relative increase in suicide risk was highest in the first 5 years after cancer diagnosis and declined gradually after that. However, the risk remained elevated for 15 years after a cancer diagnosis. 
Higher suicide rates among patients with cancer were associated with being male, white, or unmarried. Among men, higher suicide rates were noted with increasing age at diagnosis. Suicide rates were also higher among patients with advanced disease at diagnosis.

Suicide rates varied by type of cancer: The highest rates are among patients with cancers of the lung and bronchus, stomach, and head and neck, including the oral cavity, pharynx, and larynx. A high prevalence of depression or distress was found among patients with these types of cancers. The high rate of depression in head and neck cancer may be explained by the devastating influence of the illness on one's quality of life. This is because its affects on appearance and essential functions such as speaking, swallowing, and breathing.

A study by Miller et al examined the relative risk of suicide associated with a range of medical conditions among older Americans. The researchers found that cancer was the only disease associated with suicide. Psychological issues associated with suicide were affective disorder, anxiety disorder, treatment with antidepressants, and treatment with opioid analgesics.  

Sareen and colleagues studied the association between cancer diagnosis, mental disorders, and suicidal thoughts. They found that in patients aged 15–54 years, cancer was associated with increased odds of major depression, panic attacks, and mental disorder. However, no association between cancer and mental disorder was found in the patients >55 years, despite an increased risk of suicide. These researchers emphasize that depression remains a major risk factor for suicide in cancer patients and that screening for depression could be a useful way to identify patients at risk. They stressed that understanding of a patient's psychological state and asking about symptoms of depression, distress, coping, and suicidal ideation are crucial to identifying at-risk cases and initiating treatment.

They emphasized the need to pay close attention to patients with cancers with greater severity and pain. While the first step would be to rigorously screen for depression among patients diagnosed with cancer, especially soon after diagnosis and at critical junctures, interventions to address hopelessness might provide an opportunity to prevent suicide.

The investigators noted that interventions that focus on existential issues and on attenuating pessimistic thoughts, or even spirituality-centered interventions to address existential conflicts, may help decrease hopelessness. Counseling may be another important approach to prevent suicide in at-risk cancer patients. This approach involves speaking with patients at heightened risk for suicide (and their families) about reducing their access to the most common methods used to commit suicide.

In the US, the most common method is firearms. The goal of such counseling is to reduce the odds that a suicide attempt ends in death. Although approaches to preventing suicide vary, there seems to be little debate about the importance of the clinician's role. The results of these and other studies underscore the significant psychosocial impact of cancer. It is hopeful that health care providers will continue to be vigilant for signs of depression and suicidal thoughts and remain open to discussion of these topics. This will allow patients’ mental health needs to be addressed more readily, with referral to mental health specialists when appropriate.






Coping with uncertain future and waiting for tests results

Once one has been diagnosed with cancer and even after successful treatment, it is difficult and close to impossible to completely free oneself from the fear that it may return. Some people are better than others in living with this uncertainty; those who adjust well end up being happier and are more able to go on with their lives than those who do not.

One of the difficult challenges is waiting for the results of an important test or scan (i.e., PET or CT). Many individuals feel anxiety and are worried during the waiting period. Hopefully, the results of such tests are made available without a long delay.

What makes predicting the future difficult is that the scans used to detect cancer (positron emission tomography or PET, magnetic resonance imaging or MRIand computed tomography or CT ) only detect cancer that is larger than one centimeter; physicians may miss a small lesion located at a site that is difficult to visualize.

Patients have therefore to accept the reality that the cancer may return and that physical examination and vigilance are the best ways of monitoring their condition.

What often helps with coping with a new symptom (unless it is urgent) is to wait a few days before seeking medical assistance. In general the majority of new symptoms will go away within a short period. Over time, most people learn not to panic and to use past experience, common sense, and their knowledge to rationalize and understand their symptoms. 

Hopefully, over time, one gets better in coping with an uncertain future and learns to accept it, and live with it, striking a balance between fear and acceptance.

Some suggestions how to cope with the uncertain future include:


        Separating oneself from the illness
        Focusing on interests other than cancer
        Developing a life style that avoids stress and promotes inner peace
        Continuing with regular medical check-ups







Post-traumatic stress disorder (PTSD) after laryngectomy 

Post-traumatic stress disorder (PTSD) symptoms may start within three months of a traumatic event. This can occur in 24% of patients who survived intensive care unit (ICU) hospitalization, and up to 11% of those undergoing laryngectomy. It is characterized by intrusive thoughts, nightmares and flashbacks of past traumatic events, avoidance of reminders of trauma, hypervigilance, and sleep disturbance. These individuals compensate for such intense arousal by attempting to avoid experiences that may begin to elicit symptoms; this can result in emotional numbing, diminished interest in everyday activities and, in the extreme, may result in detachment from others.

Symptoms include:

Intrusive memories:
  • Recurrent, unwanted distressing memories of the traumatic event
  • Reliving the traumatic event as if it were happening again (flashbacks)
  • Upsetting dreams about the traumatic event
  • Severe emotional distress or physical reactions to thing that reminds one of the event



Avoidance:
  • Trying to avoid thinking or talking about the traumatic event
  • Avoiding places, activities or individuals that remind one of the traumatic event
  • Negative changes in thinking and mood


Negative changes in thinking and mood:
  • Negative feelings about oneself or other persons
  • Inability to have positive emotions
  • Feeling emotionally numbness
  • Lack of interest in activities one used to enjoy
  • Hopelessness about one’s future
  • Memory problems, including not remembering everything about the traumatic event
  • Difficulty maintaining close relationships


Changes in emotional reactions:
  • Irritability, angry outbursts or aggressive behavior
  • Always being on guard for danger
  • Overwhelming guilt or shame
  • Self-destructive behavior, such as overdrinking or risk taking
  • Trouble concentrating
  • Trouble sleeping
  • Being easily startled or frightened


PTSD treatment can help regaining a sense of control over one’s life. Psychotherapy is the main treatment, but often includes medication. Combining these treatments can help improve the symptoms, and teach skills to address the symptoms, help one feel better about themselves and learn ways to cope if any symptoms arise again.

Psychotherapy of PTSD treatment include:

Cognitive therapy helps recognizing the ways of thinking (cognitive patterns) that are keeping one stuck — for example, negative or inaccurate ways of perceiving normal situations.
Exposure therapy helps safely face what one finds frightening so that one can learn to cope with it effectively.

Group therapy can also offer a way to connect with others going through similar experiences.







Sharing the diagnosis with others


After being diagnosed with cancer one has to decide whether to share the information with others or keep it private. Individuals may choose to keep the information private out of fear of stigmatization, rejection or discrimination. Some do not want to show vulnerability and weakness or feel that they are pitied by others. Acknowledged or not, sick people – especially those with a potentially terminal illness - are less able to be competitive in society and are often intentionally or unintentionally discriminated against.  Some may fear that otherwise compassionate friends and acquaintances may distance themselves in order to be protected from a perceived inevitable loss - or simply because they do not know what to say or how to behave.

Keeping the diagnosis private can create emotional isolation and burdens as one faces the new reality without support. Some may share the diagnosis only with a limited number of people to spare others from the emotional trauma. Of course, asking people to keep this often devastating information private deprives them from receiving their own emotional support and assistance.

Sharing the information with family and friends may be difficult and is best presented in a way that suits the individual’s coping abilities. It is best to communicate one on one and to allow each person to ask questions and express their feelings, fears and concerns. Delivering the news in an optimistic fashion, highlights the potential for recovery, can make it easier. Telling young children can be challenging and is best done according to their abilities to digest the information.

Following surgery, and especially after a laryngectomy it is no longer possible to hide the diagnosis. Most people do not regret sharing their diagnosis with others. They generally discover that their friends do not abandon them and they receive support and encouragement which helps them through difficult times. By “getting out of the closet” and sharing their diagnosis, survivors are making a statement that they do not feel ashamed or weak because of their illness.

Laryngectomees are a small group among cancer survivors. Yet they are in a unique position because they bear their diagnoses on their neck and through their voice. They cannot hide the fact that they breathe through their stomas and speak with weak and sometimes mechanical voices. Yet their survivorship is a testament that a productive and meaningful life is possible even after being diagnosed with cancer.








Coping and adjusting to one’s disfigurement


Dealing with disfigurement of the face and neck as a result of surgery and radiation is one of the greatest challenges for laryngectomees. It may influence their self- image and self- identity.  Cancer and its treatment can cause significant changes to how one look, feel and function. For many whose appearance changed significantly after treatment, adjusting to their new looks and/or impaired ability to communicate and/or eat is very difficult.

Unlike many other types of cancer, the deformities and scars from head and neck cancer are often visible and cannot be hidden.  This may make one feel self-conscious and less confident than they were before, and may make one wonder if these visible disfigurements will influence their relationships. It may push some to social isolation and depression.  However, one can still enjoy a happy and productive life if one learns to accept these changes, and take advantage of the help available and find ways to adapt to their new reality.

Hopefully, over time one can adjust to their disfigurements. These adjustments require dealing with physical, emotional and social issues. Physical adjustments include dealing with difficulties in drinking, chewing, swallowing, breathing, speaking, hearing and head and neck movements. These issues may affect one’s social adjustment as they may limit one’s ability to eat out or enjoy other social interactions and can lead to isolation. The need to find new ways to communicate can be frustrating and difficult. Overcoming one’s functional challenges and fears about how others may react to them is an important step in adjustment. Maintaining an active social life can assist, prevent or reverse depression, anxiety and isolation.

Some individuals struggle more with changes in their appearance than how they function. Adjusting to changes in both appearance and function may be even more challenging. Because one’s face and neck are visible to others and it is there where one express their emotions many feel self-conscious or even afraid of social interactions because they may be uncertain about how people will react to them. Even though it is difficult to control how others will react, there are coping strategies that can help one interact more confidently and/or avoid negative encounters. Clinical research showed that individuals with facial disfigurements who approach others with confidence and the belief that they will accept their appearance are more likely to be successful socially and emotionally than those who are not confident or expect rejection. Most people will respond positively and adapt quickly to one's appearance and will react better to those who are confident and positive. A potentially positive and an uplifting consequence of openly displaying their deformities is that this reveals one’s medical history and the fact that one is a cancer survivor who goes on with their life despite their handicap.








Sources of social and emotional support

Learning that one has laryngeal or any head and neck cancer can change the individual’s life and the lives of those close to them. These changes can be difficult to handle. Seeking help to better cope with the psychological and social impact of the diagnosis is very important.

The emotional burden includes concerns about treatment and its side effects, hospital stays, and the economic impact of the illness including how to deal with medical bills. Additional worries are directed how to caring for one’s family, keeping one’s work, and continuing one's daily activities.

Reaching out to other laryngectomees and head and neck cancer support groups can be helpful.  Hospital and home visits by fellow survivors can provide support and advice and can facilitate recovery. Fellow laryngetomees and head and neck cancer survivors frequently provide guidance and set an example for successful recovery and the ability to return to a full and rewarding life.

Sources for support include:


  • Members of the health care team (physicians, nurses, and speech and language pathologists) can answer and clarify questions about treatment, work, or other activities.
  • Social workers, counselors, or members of the clergy can be helpful if one wishes to share one's feelings or concerns.  Social workers can suggest resources for financial aid, transportation, home care, and emotional support.
  • Support groups for laryngectomees and other individuals with head and neck cancer meet with patients and their family members and share what they have learned about coping with cancer. Groups may also offer support in person, over the telephone, or on the Internet. Member of the health care team may be able to help in finding support groups.


Enclosed are sites where support can be found:

The International Association of Laryngectomees Website provides a list of the local laryngectomee clubs in the USA and Internationally. http://www.theial.com/ial/

Oral cancer Foundation at: http://oralcancerfoundation.org/

Mouth Cancer Foundation at: http://www.mouthcancerfoundation.org/

Support for People with Oral and Head and Neck Cancer (SPOHNC) at: http://www.spohnc.org/

A site that contains useful links for laryngectomees and other head and neck cancer patients at: http://www.bestcancersites.com/laryngeal/

Head and Neck Cancer Alliance at: http://www.headandneck.org/

Head and Neck Cancer Alliance Support Community at: http://www.inspire.com/groups/head-and-neck-cancer-alliance/

American cancer society information on head and neck cancer at: http://www.cancer.gov/cancertopics/types/head-and-neck/

United Kingdom cancer support site on head and neck cancer at:  http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Larynx/Laryngealcancer.aspx#.UJGZu8V9Ixg

WebWhispers at:  http://www.webwhispers.org/






Some "Benefits" of being a laryngectomee


There are some "benefits" being a laryngectomee. 

These are:
• No more snoring
• Excuse not to wear a tie
• Not smelling offensive or irritating odors
• Experiencing fewer colds
• Low risk of aspiration into the lungs
• Not a risk of laryngeal edema (i.e. due to anaphylaxis)
• Easier to intubate through the stoma in an emergency





The power of a hug 
(by Itzhak Brook MD, published in The Los Angeles Times, May 23, 2011)


I was deeply shaken to learn that I had hypopharyngeal cancer. As a physician, I had access to my hospital’s laboratory results, so I took a shortcut: Rather than wait for my surgeon to call me, I looked for my name in my hospital’s pathology laboratory log book.
After my name, the log book stated in no uncertain terms: “mildly differentiated squamous cell carcinoma.”
I could not believe my eyes. Was this possible? Could it be a mistake? In spite of the hopeful questions that permeated my mind, I knew it was not a mistake: Right here, in front of me , in black and white — my own death sentence. Still, to be convinced that the diagnosis was real, I had to view the biopsy specimens under the microscope myself — and there it was.
In that very instant, my whole world changed. I saw before me the inevitable end. I had always had a sense of invulnerability. Now I was left with uncertainty about my prognosis and future.
I was in a state of desperation and disbelief when I left the pathology laboratory and walked into my internist’s office to break the news to him. He slowly got out of his chair without uttering a word and gave me a big, supportive hug.
It felt so good to know that he deeply cared for me beyond our professional relationship. His embrace moved me —  made me feel that I was surrounded by those  who truly appreciated my pain and distress, and who shared my personal tragedy. It meant much more at that moment than a thousands words of support or elaborate explanations.  It was the power of a caring, human touch. I knew at that moment that I was not alone in my future struggles and that he would be beside me all the way.
I had never been hugged by a medical caregiver. Nor have I given a hug to a patient: I always believed in maintaining a professional distance between them and me. Yet at that moment I learned that there may be situations in medical practice where the power of a hug eclipses everything else one can offer.
In the realm of modern medicine, where machines and tests often substitute for close patient-physician contact, this fundamental art is often forgotten. A hug can take many forms. Even a simple pat on the shoulder or a warm handshake conveys genuine care and concern. In fact, there is actually scientific evidence that human touch can generate oxytocin and endorphins, which ameliorate pain and create a feeling of wellbeing.
Unfortunately, I had to undergo a total laryngectomy to have my cancer removed. The period after my surgery was very physically and emotionally trying, as I battled numerous medical problems and also struggled to regain my ability to speak. What eased those difficult months was the knowledge that my otolaryngologist’s door was always open to me and that he would act immediately to assist me in any way he could. His dedication, emotional support, sincere care and friendliness helped me overcome many of the difficulties and problems I encountered. They were indispensable in my road to recovery.
I sometimes came to his office several times a week — often just to talk with him and tell him how I was doing. I always felt welcomed. He greeted me with a big smile, and hugged me every time I left. This simple act created a bond of intimacy between us and made me feel that I had a friend.
My personal experiences changed my attitude toward my own patients. I am less concerned now about maintaining a “professional distance” or avoiding a caring touch or hug when appropriate. I had learned  that a caring gesture can significantly deepen the healing relationship between patient and physician. Since, as a laryngectomee, I have found that speaking is often difficult and challenging, I am fortunate to have discovered that the “power of a hug” can convey so much more than the spoken word.



An interview of Itzhak Brook MD about the power of a hug in patient care.




A laryngectomee dog who inspires others


Bean is a female Pitbull Terrier dog who is a laryngectomee. Bean was born in 2011 and underwent laryngectomy at UC Davis Veterinary Medical Teaching Hospital in 2012 because of muscular dystrophy.  She was unable to swallow because of her muscular dystrophy, and has problems with regurgitation. She suffered from aspiration pneumonia, had trouble sleeping and was choking before surgery. She had the first ever canine laryngectomy to treat these problems. She is a dog who loves people, has a great zest for life and an inspiration to everyone including human laryngectomees.




Bean with laryngectomee patients