Barbie Perkins-Cooper, Author

Dearest Readers:

Although the month of October is Breast Cancer Awareness month, I wanted to share a story about my father’s battle with esophageal cancer. The month of April is the scheduled month for Esophageal Cancer Awareness.

When my father was diagnosed, medical professionals assumed he was a smoker. He never smoked – EVER!

DIAGNOSIS – ESOPHAGEAL CANCER

The diagnosis rings in your ears. Esophageal cancer. A thousand thoughts and questions race inside your mind and you find it difficult to cope, think or relax. You want a second opinion. You want to live and you want things to be the way they were, before your quality of life was questionable due to cancer.

Tuesday, December 9, 1997 was the day I became an advocate for esophageal cancer. The endoscopy revealed a tumor, located in the esophagus. A malignant tumor…Cancer…the dreaded word echoed inside my brain. No! I screamed! It cannot be cancer! There must be some mistake! My father took such good care of himself, but like lots of men from his generation, he refused yearly exams and only went to the doctor when he was ill.

Symptoms of Esophageal Cancer

Esophageal cancer is a difficult cancer to detect. Many of the symptoms, such as coughing, difficulty swallowing {dysphagia), and indigestion are thought to be acid reflux. Esophageal cancer may start as tightness in the throat or pain in the chest. Recurring hiccups, hoarseness, difficulty swallowing, or regurgitating food and weight loss, could be symptoms of cancer of the esophagus. Until my father’s diagnosis, I was clueless of the disease. Now, I serve as an advocate, to educate others, and to prepare families about this debilitating disease that attacks profusely, steals dignity and quality of life and can kill. I describe esophageal cancer as the silent cancer.

SYMPTOMS 

The symptoms of esophageal cancer rarely appear until the advanced stages of the disease. Unlike early detection of breast cancer and other forms of the disease, cancer of the esophagus is not able to detect by early screening. While it is recommended by the American Cancer Society to get regular physicals, eat a proper and healthy diet, quit smoking, if you are a smoker, and to maintain a healthy weight, esophageal cancer is a silent cancer that creeps up only after it advances. The major complaint from someone diagnosed with the disease is the inability to swallow or retain food. Social activities with friends and quality of life become a major issue.

Treatments for Esophageal Cancer

Cancer of the esophagus is a treatable disease in many cases, including surgery, chemotherapy and radiation and clinical trials. If surgery is an option, the procedure could relieve the excruciating symptoms and improve the quality of life for the patient. If surgery is not an option and quality of life is threatened, due to the inability to swallow or retain nutrition, the doctor may prescribe a PEG tube.

The Percutaneous Endoscopic Gastrostomy (PEG tube) is a form of life support for patients who are having difficulty with swallowing, or eating. Insertion of the PEG into the stomach is performed by an endoscopic procedure. With the PEG tube in place, liquid nutrition, along with medications, may be administered directly through the feeding tube, into the stomach. Introduced in 1979, the PEG tube has been used for an estimated 200,000 patients, serving as a form of nutritional support.

At the age of 84, Walter W. Perkins fought the battle of his life. His prognosis was not a good one. On two occasions, I prayed for a miracle to happen when he was near death, and on those two occasions, the miracle was granted. The doctors said he might live six months, if chemo and radiation therapy were successful. He beat their odds, battling this disease for nineteen months with stiff determination, faith, and positive thoughts guiding his way. Due to the location of his tumor, surgery was not an option for us. A few days after his diagnosis, he permitted the doctors to connect the PEG tube to his frail body. Furious that he could not swallow without regurgitating his food, he called his feeding tube an umbilical cord. His quality of life decreased at a rapid rate after his diagnosis of esophageal cancer. Fortunately, the PEG tube provided him the ability to regain some of his weight, extending his life until he became despondent and demanded to eat food again. His doctor consulted with me, letting me know that if he insisted on eating, he would aspirate his food and choke to death. For us, it was a quality of life issue. I did not fight the battle to override his decision to enjoy food again, even though I knew eating food would lead to his death. On July 6, 1999, while I was entering the nursing home for my daily visit, my father aspirated his food and was gone.

Before his diagnosis, I was naïve to the prognosis of esophageal cancer. This disease was not marketed or publicized whenever I read stories about cancer, and I called it the silent cancer, because it silently develops without many warning signs. When I expressed my guilt to the oncologist, I was told that esophageal cancer is increasing and is quickly becoming one of the fastest growing cancers in the world.

Additional treatments are based upon the type of esophageal cancer, location of tumors, and how capable the patient is to respond to treatment. In my father’s case, his age, fragile condition and the location of his tumor dictated his treatment of chemo and radiation therapy. After his second dosage of chemo, his treatment with chemicals and radiation were cancelled. The drugs had left him so weak we almost lost him. The chemotherapy had drained every ounce of strength he had. From this point on, the only treatment would be for the quality of his life.

Photodynamic Therapy (PDT)

A new method of treatment for cancer of the esophagus is photodynamic therapy. PDT is helpful in some cases by injecting chemicals into the blood. Laser lights target the cancer by an endoscope procedure. A minor disadvantage of PDT is the light may only reach cells on the surface, and cancers that have spread are not treated.

Survival Rate

According to the American Cancer Society, the survival rate of esophageal cancer is low. New cases are increasing at a rapid rate. It is estimated that in 2008, approximately 16,470 patients will be diagnosed with cancer of the esophagus. Deaths are predicted to total 14,280. The Five-Year Survival Rate is estimated to be only 34%. These statistics are not encouraging; however, with developments of clinical trials, drug therapies and the willingness to fight the battle of cancer, I am hopeful the statistics will increase soon.

Quality of Life

All types of cancer create issues with the quality of life for the patient and family. Esophageal cancer certainly affects the quality of all. The American Cancer Society identifies four basic quality of life factors, including social, psychological, physical, and spiritual. Watching my father fighting esophageal cancer, I would like to add one more quality of life issue, the quality, and loss of independence. Before my father’s diagnosis, I watched an amazing independent man walking in his shoes. He lived alone in a retirement community and at the age of 83, he took daily strolls, cooked his meals, gardened occasionally and he enjoyed singing. After the diagnosis and the PEG tube insertion, he was observed by medical professionals to need skilled care – a term I became most familiar with as his advocate. Skilled care was a medical term that meant he needed the daily care of a registered nurse. His social life consisted of a roommate in the nursing home and the staff of medical professionals caring for him. He was too weak to go anywhere most of the time, and when he was able to go out with me, I had to be careful not to take him to restaurants or out for ice cream since he was receiving liquid feedings from the PEG tube and he could not swallow. His physical activity was non-existent because he was so frail. All that remained was the spiritual quality of life. Before his death, my father tapped into the spiritual side of his life, reading the Bible constantly, quoting verses, and singing religious songs, aloud. Before his death, the singing quieted. He coughed constantly and would lose his breath from the coughing attacks. In a whispering voice, he reminded me he was ready to go, if the good Lord decided it was his time. I noticed his voice was still hoarse and his eyes did not hold their usual sparkle.

Additional research for Esophageal Cancer is underway and I am hopeful that in time there will be a cure for all cancers. Cancer Aid Research, education, and advocacy serve as strong components to understand cancer. Esophageal cancer is usually diagnosed in the late stages of cancer, as was the case with my father. When I inquired about the stage, I was told he was in Stage Four. The outlook for this disease is not a good one. The survival rate is low. If you are a smoker, quit. If you have symptoms such as unexplained weight loss, pain or difficulty swallowing, hoarseness, non-stop coughing, heartburn, or hiccups, make an appointment with your doctor and ask about esophageal cancer. If you are at high risk, the doctor might suggest an endoscopy.

Serving as my father’s caregiver gave me a new perspective on life and the belief in miracles. Now I appreciate the beauty of a new morning sunrise and I can look towards the future while doing all that I can to educate others about esophageal cancer and care giving. The experience of watching my father suffer so much, still with a smile on his face, even when he was angry and in denial about his cancer taught me so much. He encouraged me to move forward with life. I have chosen my life’s direction, or perhaps it chose me, and I will do all that I can to become an advocate for those who battle this dreadful disease. My passion is one of hope so cancer will soon become a curable disease that is not silent. I still believe in miracles.

Sources:

• American Cancer Society http://www.cancer.org
• Margolis, Marc, The Annals of Thoracic Surgery http://ats.ctsnetjournals.org
• Esophageal Cancer Awareness Association http://www.ecaware.org

Barbie Perkins-Cooper is a freelance writer who loves the journey and exploration of travel and health. She works full-time as an editorial photojournalist and has published numerous articles and photographs for regional, health and beauty and travel publications including the Travel Channel. Barbie resides in Charleston, South Carolina with her husband. She is the author of Condition of Limbo and Career Diary of a Photographer. Visit her website www.barbieperkinscooper.com