Amazing Woman Recovering From Her Second Mesothelioma Surgery
In contrast to this quiet peace, the facts are as startling as they are disturbing: Jeanette has been diagnosed with mesothelioma twice , the first time in 1975, 26 years ago.
Jeanette, now going on 57 years old, was raised on a farm in Southington, Connecticut. According to Lynn, the house was loaded with asbestos, which was no different from any other house in those days. The furnace, walls, floors, drapes, etc. were all made with asbestos. Through the years, some remodeling was done on the house and, as was common, no precautions were used. Lynn spoke with Jeanette's brother who told her that as the years wore on, the asbestos was always flaking off the walls, etc.
In 1975, Jeanette was diagnosed with mesothelioma of the right pleura. The doctors from Yale University's Medical School performed surgery and removed two tumors. They told her that mesothelioma cancer was "mean and ugly," that typically patients live no longer than six months to a year, and that she should plan for that time period. They followed up the surgery with chemotherapy (Adriomiacin and Cytoxen) and radiation (3,000 rads).
The six months the doctors had suggested Jeanette plan for passed. So did the year. And then six years passed. Jeanette had regular follow ups, for the first several years at Yale, and then closer to her home, with Dr. Peter Byeff of New Britain General Hospital, beginning in the early 80's. Mysteriously, despite the somber prediction, the tumor did not return. Jeanette lived what she felt to be a normal, basically unrestricted life. This continued for more than 20 years.
Beginning in the mid 90's Jeanette had a yearly bout of bronchitis, or so the doctors said. Every year it seemed to worsen and stay longer. In 1999, the bronchitis symptoms would not lessen, even with antibiotics. At that point the doctors tried to treat her for asthma and other ailments.
Lynn and Jeanette consulted a number of doctors. Despite her medical history, most of them, including the hospital's thoracic surgeon, were convinced that she could not have a reoccurrence of mesothelioma. Only two doctors seemed open to the possibility of a recurrence. Dr. Lahiri, a pulmonary specialist at Saint Francis Hospital in Hartford, was convinced it was a recurrence. Jeanette's treating physician, Dr. Byeff, agreed. According to Lynn, the reasons the other doctors gave for concluding that Jeanette could not be having a recurrence were:
- Recurrences of mesothelioma have historically been within a couple of years.
- They doubted the original diagnosis of mesothelioma, due to the survival rate (or lack thereof) back in the 70's. It is possible that the original diagnosis was for so -called "benign" mesothelioma, not "maligant."
- All Jeanette's chest x-rays showed no changes. Only the CT Scan showed a mass. This mass was believed to be scar tissue from the original surgery and radiation.
- A needle biopsy showed inconclusive results.
Furthermore, no one wanted to perform the surgery to biopsy the site further. The doctors feared significant bleeding, due to the excessive scarring from the prior tumor removal surgery. Reluctantly, because of the persistence of Jeannette and Lynn, the thoracic surgeon was finally convinced to conduct an open biopsy. This was in August of 1999. The pathology report confirmed the mesothelioma -- "malignant" mesothelioma.
Jeanette and Lynn began searching for a surgeon to remove the tumor. Jeanette was dying. The tumor exerted so much pressure on her chest that she could not breathe. Her heart was failing. She felt that every breath would be her last. Yet, all they found was the medical nihilism that says, "Mesothelioma is incurable. There is nothing that can be done." The thoracic surgeon who had done the open biopsy refused to operate, citing that she would bleed to death on the table due to the significant scar tissue. Jeannette and Lynn returned to Yale. The doctors there had the same opinion. Fortunately, one of them, Dr. Lahiri, a pulmonary specialist, suggested a consult with Dr. David Sugarbaker, at Brigham & Women's Hospital in Boston.
Lynn and Jeanette set the appointment with Dr. Sugarbaker and saw him on November 23rd. He immediately agreed to the surgery. He was going to perform a pneumectomy, but upon entering the chest cavity, he found that the tumor had intruded the pericardium. He proceeded with a pleurectomy and removed as much of the tumor as he could. Later, he told Lynn and Jeanette that the tumor had the consistency of wood, and may have been growing slowly for many years. By the time of the surgery, it had collapsed the lung down so that the lung was no bigger than Dr. Sugarbaker's fist. Amazingly, with the tumor removed, the lung recovered most of its normal size.
Having gone through the surgery before, Jeannette had an idea what to expect, but compared to her surgery in 1975, her healing process was more manageable, especially with regard to pain management. The scar tissue built up from the prior surgery made the second surgery more painful and recovery more difficult. Jeanette also lost a great deal of blood. he describes her recovery period as "uncomfortable, but well worth the end result." She was out of the hospital in 10-14 days.
Based on her mother's experience, Lynn strongly suggests that everyone dealing with mesothelioma get copies of all medical records. "Every time you visit the doctor or have a scan, get copies of the reports. Insist on this. Too often reports are lost. Also, it makes getting a second opinion easier. Also, get familiar with the notes. Read them and make sure you are being told everything. My mother requested her records in the early 80's and it was good she did so. By the time of her recurrence in the 90's, the records had been destroyed and there weren't any microfilms. If she hadn't previously obtained copies herself, we wouldn't have had any records for Dr. Sugarbaker to reference."
Jeanette is currently doing well, considering. She lives a normal, but limited life. She can not do what she used to--walking miles, visiting long, driving far, etc. She has moments of extreme fatigue, shortness of breath, chest pains (bilaterally), heart palpitations, nausea, etc. It is hard for her to tell what is the pain from the surgery and what is the pain from the mesothelioma. But her quality of life is wonderful compared to how she felt before and immediately after the surgery. Her appetite is back. Her weight has stabilized. She is sleeping well. For the most part, people look at her and can not tell that she is sick.
At present, the cancer is being monitored for growth. If the tumor's growth remains slow, chemotherapy will not help her. She cannot receive any more radiation. So at the moment, she is not receiving treatment. Lynn is exploring what other therapies might be available to stabilize or fight the tumor, and Jeanette is extremely grateful for all her daughter has done to help her.
Jeanette believes strongly that one's attitude can either help or hurt. She does not let fear or negative thoughts get to her. Instead, she draws strength from her faith. She does not know exactly what life will be like after her second battle with mesothelioma, but she says, "I will find my new me and enjoy who I am and what I can do." This amazing woman is at peace with herself and with her future.
*** POSTED MARCH 12, 2001 ***
