Barbara A. Chernow, PhD (Columbia University), is the founder of Chernow Editorial Services, Inc., a company that produces medical and professional books for publishers worldwide. She has also edited many reference projects, including the Columbia Encyclopedia, is the author of Beyond the Internet, and has taught at NYU and the New School. She published an article, The Other Side of Grief, in the Brooklyn Quarterly 

Barbara Chernow

What is the appropriate reaction when a friend is diagnosed with cancer? Should you be sympathetic, optimistic, questioning? How do you handle your own fears—those you feel for your friend and, particularly as you grow older, those that evoke the possibility of personal loss and even the reality of your own vulnerability?

Of course, your response will depend on many factors, including the depth of your friendship, the stage of the illness, the nature of the proposed treatment, the prognosis and the emotional/psychological makeup of the patient. But evidence shows that the support of friends improves a patient’s outlook, ability to manage treatment, and long-term adjustment to changes in functionality.

Take your initial cues from the patient, but recognize that the patient’s attitude and needs may change over time. Some patients need to talk; others are withdrawn. Some are positive, others fatalistic. Some try to continue normal activities; others isolate themselves. Adjust your responses and activities to the patient’s needs and emotional state.

Above all, stay in touch and show that you care and are there to help. If you are nearby, arrange to visit. Bring favorite and nutritious snacks to encourage eating. Engage in conversation about treatment and progress, but also about other subjects of mutual interest—hobbies, world events, family members. Engage in positive activities that engage and distract, such as taking a walk, perhaps going to a local diner for a quick bite, playing cards or board games or seeing a movie. If appropriate and needed, offer to accompany your friend to treatment and, if your friend is strong enough, do something positive afterward. Perhaps you can shop or go to the pharmacy, run other errands or help with household chores.

If your friend is far away, stay in touch by phone, email or the occasional note or card. Send small gifts that can help pass the time, such as a book, a game, a movie or even a gift certificate to a local eatery that delivers.

Recognize that your friend may not always be receptive or hospitable.  At times, depression may set in—or just exhaustion. Your friend may fall asleep or become withdrawn or cry. Be prepared to sit or listen quietly. Sometimes, that is in itself comforting.

Remember that a patient can still hear, so even if you think they are sleeping or distracted, you can continue reading to them or just keep up a positive conversation. If others are present, avoid discussing the patient’s condition or prognosis.

If your friend or a family member or caregiver asks you to leave, comply without resentment. Remember, family members and other friends are coping with their own emotions in adjusting to the impact of the disease. Stay strong and offer each other understanding and support.

If the patient is terminal, you may have difficulty visiting. Watching the disease progress is devastating and you may be tempted to avoid contact. But the last favor you can give a friend, the one favor they cannot be expected to reciprocate, is to be present at the end. To be there, to be supportive, to be loving, to show that their lives had value and their memory will endure. Anyone I know who avoided such end-of-life contact regretted it, as you can never go back and act differently. It is the ultimate act of friendship.

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Friendships and Cancer: A Delicate Balance

In 1965, two years after my mother underwent surgery for a maxillofacial tumor, I woke to find her softly weeping. She had been through a difficult week at the prosthodontist. By now it was clear that excision of the tumor had required such a large removal of bone that the weight of the prosthetic device was too much for her remaining gum and teeth to support. The present was difficult; the future offered little hope of further improvement. Reality had set in.  

That morning she shared a story. Prior to her surgery, one doctor — a psychiatrist &mdash; asked if she truly understood what was going to happen and if she understood the extent of the removal and the postsurgical issues. He gently suggested that she consider accepting palliative care and then letting go. She had never weighed such an option. It ran counter to her maternal instincts, to her love of family, to her desire to be there for us and to share with us. It was an alien concept in our world in the 1960s; no one chose to die. Although scared, she was a fighter and believed, as surgeons had told her, she would be able to function again and that her physical appearance would be acceptable.   

But “function again” and “acceptable physical appearance” are subject to interpretation. Her doctors’ definitions were not hers. Quality of life is relative; every patient has to define it personally. She had trouble eating, sleeping, breathing and talking. She looked different—and it never healed. Both she and my father thought her doctors meant she would come back to herself; they were both overwhelmed when they discovered she never could.   

She regretted her decision to undergo surgery. The psychiatrist had been right, she concluded. She should have taken palliative care. It had all been too much. The strain on her, the strain on the family and the never-ending discomfort. Although she experienced many joyous moments, her suffering continued for 33 years, only to culminate in a second bout of an even more devastating oral cancer that took her life.   

Today, patients have more options for learning about their illnesses and a wider range of successful treatment options. They consult with a variety of medical specialists and can discuss outcomes with survivors, who can share experiences and who understand that meaningful outcomes include acceptable quality-of-life functioning. Accepting palliative care is no longer seen as a decision to die. It has become a medical specialty, a recognized option for relieving pain, treating symptoms and side effects, and providing emotional, spiritual and educational support to patients facing quality-of-life illnesses. Such care is given in addition to cancer treatment. Not all palliative care means terminal care, but hospice is the next step if a patient reaches the point where treatment can no longer destroy the cancer. Palliative care can help the patient transition to end-of-life care.   

Respect the right of a cancer patient to decide against any treatment or to reach a point where fighting the disease is no longer worth the suffering. Their reasons can include age, medical history and risks, religious beliefs, an understanding of postsurgical quality of life, or simply frustration with continued treatment that is resulting in no improvement. Realize that the patient, family and caregivers are all experiencing a range of emotions from anger to frustration to sadness. Focus not on the end, but on making the most of the remaining time you share together. It took me many years to admit that my mother was right. 

Respect the right of a patient with cancer to decide against treatment or to reach a point where fighting the disease is no longer worth the suffering.

Palliative Care in Cancer: A Quality-of-Life Choice

Any diagnosis of cancer is frightening, but the functional, psychological and cosmetic effects of oral cancer treatment create an additional layer of fear. Even patients who are treated successfully will require care throughout their lives. This disease exacts an unending physical and mental price.  

Fortunately, the medical community now takes an integrated approach to oral cancer treatment. A multidisciplinary team of otolaryngologists, surgeons, medical and radiation oncologists, prosthodontists, speech pathologists and therapists, audiologists, nurses, nutritionists, psychologists and social workers develops an individualized treatment plan for each patient. Such plans combine the primary goal of eliminating the cancer with preservation of surrounding organs and consideration of post-treatment quality of life. Medical teams and families also consider the patient’s overall health and lifestyle, as well as the potential side effects of treatment. Although coordinating such a medical team increases the treatment planning time, the decision to skip pre-surgical discussions will negatively impact post-surgical rehabilitation.    

Thus, this approach is best implemented at a teaching hospital or a dedicated cancer facility, where patients may also benefit from computer programs that simulate post-surgical appearance, meetings with survivors, before and after photographs of patients, and models of relevant prosthetic devices. Pre-surgical meetings with prosthodontists can result in preventative dental treatment and better preparation for the fitting of post-surgical prostheses.   

Surgery’s goal is to remove the tumor and sufficient surrounding tissue so that no tumor cells remain. Although the surgery may succeed in this goal, side effects are numerous and seriously impede quality of life. Patients face lifetime challenges with eating, breathing, sleeping, hearing, speech, vision, upper arm movement, appearance, dental health and mental well-being.   

Other treatment options are radiation therapy and chemotherapy. Radiation can be used in place of surgery, or as treatment after surgery if additional cancer cells are found. Before starting radiation therapy, however, the patient and family should meet with a prosthodontist, speech therapist and audiologist, as such treatment can damage teeth, as well as affect speaking and hearing. Chemotherapy, the use of drugs to destroy cancer cells, can be combined with radiation therapy, which may produce a better outcome, but also increases the side effects. In addition, new treatments have emerged, including more successful surgical techniques for flap and bone reconstruction.   

Whatever treatment plan is developed, the patient will need follow-up care for a lifetime. Complex reconstruction may occur during the surgical procedure or may require a subsequent surgery. A prosthodontist can fill the gap created by the removal of cancerous bone and tissue with artificial devices or soft-tissue flaps. The most common post-surgical treatment, known as prosthetic rehabilitation, can help maintain function, but is, at best, uncomfortable and requires routine adjustment. Removable prosthetic devices need to be maintained and replaced as wear takes its toll and the patient’s tissues and remaining bone structure change with age. Patients need to maintain these devices daily; they often loosen and detach during wear, and the use of bioadhesives has proved less than optimal. If the patient had poor dental health conditions prior to surgery, it can limit the options available to the prosthodontist. After surgery, consultations with cosmeticians, hair stylists and opticians may teach the patient how to camouflage some of the visible effects.   

Other newer treatment options include microvascular free flap tissue transfers, bone grafting, lighter prosthetic materials, improved adhesives, advances in implants, immunotherapy, targeted therapy and an hyperbaric oxygen technology. Major advances have been made in osseointegration, in which natural bone attaches itself to an implant, but patients need to be carefully selected and sometimes the necessary implant sites are not available.   

All of this can be overwhelming to the patient and family. Thus, the need for an integrated team approach is highlighted—an approach in which the family has a central contact person who coordinates appointments, explains options and discusses outcomes. In the end, no patient will look or function the same as before the surgery. Such an outcome is unrealistic. Expectations are also relative. What is OK to one person in terms of appearance may not be acceptable to another. People’s tolerance for pain and discomfort vary, as do their abilities to cope with the reactions, sometimes insensitive, sometimes uncontrollably surprised, of others to the changes.   

It is a challenge, one my mother met with grace and determination for 33 years, but always with regret about the course of treatment she chose. Be informed about surgery and rehabilitation options; be realistic about expectations and a lifetime of side effects.   

Reliable patient information resources abound, including the websites of research hospitals, including the Mayo Clinic, Memorial Sloan Kettering Cancer Center, and the MD Anderson Cancer Center. For a detailed discussion of surgical options, go to 

http://www.cancer.net/cancer-types/oral-and-oropharyngeal-cancer/treatment-options

. For rehabilitation and trends in treatment, go to

Any diagnosis of cancer is frightening, but the functional, psychological and cosmetic effects of oral cancer treatment create an additional layer of fear. Even patients who are treated successfully will require care throughout their lives. This disease exacts an unending physical and mental price. 

Oral Cancer Surgery and Functional Rehabilitation: Be Positive, But Realistic

Because I was only 15 years old when my mother was first diagnosed with maxillofacial cancer in 1963, I did not participate in any of the conversations between doctors and adult family members about the extent of the cancer, the surgical approach and the subsequent prosthodontic treatment that would be required. As a result, my memories consist only of what others told me, much of it after the fact. And, those memories were colored by everyone’s shock and disappointment at the long-term effects of the surgery on my mother’s appearance and ability to function. But this was in 1963, a much different time and place. Doctors were less forthcoming, patients were more passive, and viable treatment options for functional rehabilitation were just emerging.

Fortunately, cancer awareness has increased and so have treatment options. One of my goals is to encourage patients and families to maximize their use of available resources to minimize post-treatment challenges and discomfort. This article discusses the diagnosis and information gathering; a subsequent blog will cover treatment options.

Early Detection Lessens Postoperative Deformities

As with all cancers, early detection is critical.  A routine physical or dental examination should include a check for oral cancer. See a physician if you experience persistent pain in the mouth and/or face, a mouth sore or lump that does not heal, white or red patches in the mouth, difficulty swallowing, bad breath or enlarged lymph nodes. In my mother’s case, she experienced facial pain and went to her dentist for a checkup. He sent her to an otolaryngologist, who diagnosed a sinus problem. It took months for a third doctor to correctly diagnose her disease as maxillofacial cancer, and several additional weeks for a team of doctors to determine the proper course of surgery. Those delays significantly increased the amount of bone and tissue that had to be removed.

A first step is always a head and neck examination in the doctor’s office that may include the use of mirrors and fiber optic scopes to examine hard-to-see areas. A more thorough procedure, performed in the operating room under an anesthetic, is a panendoscopy, which enables the doctor to examine the oral cavity and areas all the way down to the stomach. If a tumor is found, tissue may be removed for microscopic review. Such a review, known as a biopsy, is the only accurate way to diagnosis oral cancer.

Although imaging tests are not used to diagnose oral cancer, they may be recommended to determine if a tumor has metastasized (spread to other areas). After treatment, imaging studies can help determine if the tumor has been excised or is shrinking.

If cancer is diagnosed, a complete physical, including blood and cardiac testing, should also be performed to determine if you are healthy enough for surgery, radiation therapy and/or chemotherapy. You should also visit your dentist to take care of any routine problems and discuss postoperative options.

Gather Information and Ask Questions: Be Quick, But Not Hasty

Any diagnosis of cancer is frightening. Patients and family members may initially experience depression, anger, confusion and denial, but never have clear heads and rational thinking been more imperative. My mother’s generation was taught to trust a doctor and listen, but not to question. Educational resources were not readily available to the non-specialist. Now, however, accurate and understandable information is abundant.

If a diagnosis of cancer is a possibility, your doctor should refer you to a specialist at a major research hospital that has state-of-the-art equipment and resources, as well as extensive experience in treating the disease. Investigate the credentials of the recommended medical team by reading evaluations of the doctors and hospital online; checking state health department records for complaints; and consulting the National Library of Medicine to see if the doctor has published articles or even participated in clinical trials of possible new treatments. Seek a second opinion from a physician at another facility, even if it is just so that you do not question the diagnosis or approach after treatment begins.

Take the time to learn about treatment options by checking the websites of major research hospitals, such as the Mayo Clinic, Memorial Sloan Kettering Cancer Center or MD Anderson Cancer Center, or of professional organizations, such as the Oral Cancer Foundation and the American Society of Clinical Oncology (ASCO), that provide accurate information for the patient and family. In short, do your homework upfront; it helps avoid regrets and anger, neither of which are productive to recovery and rehabilitation. Your goal is to trust your medical team, be informed about the disease and clearly understand treatment options and their life-effects, so that you are as comfortable as possible with the approach selected and its outcome. 

Fortunately, cancer awareness has increased, and so have treatment options. One of my goals is to encourage patients and families to maximize their use of available resources to minimize post-treatment challenges and discomfort.

Barbara Chernow

Friendships and Cancer: A Delicate Balance

Palliative Care in Cancer: A Quality-of-Life Choice

Oral Cancer Surgery and Functional Rehabilitation: Be Positive, But Realistic

Facial Cancer: Symptoms, Diagnosis, Reactions and First Steps

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