San Pedro, CA – Aug. 10, 2007 – Susan MacDonald is a 62 year-old general manager of a senior citizen condominium association. Susan loved her work, and in addition to her full-time job she enjoyed tennis, golf, and scenic drives along the California coast with her husband, Geri. Geri is a retired Navy machinist and now works as an assistant director of mechanical trades and operations for a large manufacturing plant.
Susan always knew that good health was the foundation for a good life, and she enjoyed long walks for relaxation and in order to stay fit. In early May, 2001, trim and health-conscious Susan noticed that walking had become difficult, and her breathing was labored. These were startling symptoms for a tennis player, avid walker, golfer, and active full-time manager. Her normally robust health seemed to be affected on other fronts as well, as she began to experience chronic headaches.
Susan knew something was wrong, and she consulted with her primary care physician in Downey, California. He thought she might be suffering from a minor bronchial infection and suggested an antibiotics regimen. He took a chest film, but Susan never heard back regarding the results. Like so many other mesothelioma patients, Susan was learning that the medical profession could be the worst place to turn for timely help and effective treatment.
Susan’s shortness of breath and fatigue continued. On September 13, at the urging of her daughter Laurie, she underwent an imaging diagnostic test. The results showed a problem in the right thoracic cavity. The imaging test was burned onto a CD, and given to her with instructions to consult with her physician immediately.
From bad to worse
Susan gave the CD to her primary care physician the next day. He listened to her complaints, as well as her concern that he had never given her the results of the previous x-ray. The doctor reviewed the images and then found the x-ray, which he later admitted to having misplaced. That initial film clearly showed the beginning of fluid accumulation at the base of Susan’s right lung. The doctor suggested an urgent CT scan, promising to schedule the scan immediately, and assuring Susan that he would direct his nurse to secure an appointment by the end of the week. The MacDonalds never heard back, and only after repeated calls did the doctor finally schedule the test in Los Angeles.
On September 15, Susan’s breathing problems drastically worsened. Laurie insisted on emergency treatment, and the family rushed her to the emergency room at the University of California Irvine Medical Center. An ER physician immediately ordered chest films, a CT scan, an EKG, blood tests, and other diagnostic workups. He attempted a thoracentesis, but could not withdraw any fluid as a thick accretion of tissue impeded the insertion of the needle. Susan was under observation for nine hours.
A pro tries to replace a hack
The ER physician understood the gravity of the situation, and took full charge of Susan’s situation. He informed her and her family that he wanted to admit her to the hospital immediately. However, Susan’s HMO inexplicably would not authorize the hospitalization, and the MacDonalds reluctantly decided to seek treatment within their HMO’s plan and authorized hospital. The ER doctor reluctantly agreed to release Susan only if she first agreed to seek hospitalization elsewhere immediately. At the same time they were fighting against a possibly serious illness, the MacDonalds were also marshalling their resources to persuade their own insurance company to perform its contractual and moral obligations.
On September 17, Susan presented again to Downey Hospital. Laurie had called Susan’s physician to inform him that they were proceeding to Downey, and she gave him the option of meeting them there or authorizing Susan’s admittance. He agreed to neither and asserted that she and her family were overreacting. After more than six hours of testing and waiting at the emergency room, the physician informed them that Susan’s physician had refused to admit her and insisted that she go to his office the next morning.
The next day, Susan again consulted with her physician. He advised that he was still trying to schedule a CT scan. Laurie, who had been compelled to leave her job to look after her mother and assist her in finding treatment, called the physician’s office every day to ensure that the CT scan took place, that the results went to the right place, and that her mother received a referral to a pulmonologist.
Susan underwent the CT scan on September 19. With a good deal of self-assertive effort, Susan was seen on September 23 by a Lakewood, California, pulmonologist to whom her insurance group had referred her. The pulmonologist reviewed the CT scan and additional chest films, including the original taken in May. He determined that there was a pleural effusion covering half of Susan’s right lung and that it had grown substantially since May.
The pulmonologist scheduled and performed a bronchoscopy on September 25. He was unable to biopsy any tissue. He also performed a thoracentesis, withdrawing approximately 200 ccs of yellowish, mucous-colored fluid. Cytological tests upon the fluid were negative for malignancy.
Not convinced by the cytological tests that Susan was healthy, the pulmonologist recommended a thoracotomy with biopsy. As he did so, he also advised the MacDonalds he would have to refer them, with additional delay, and asked that they wait another two weeks for the results of another chest film.
Frustrated to the breaking point by the constraints of their HMO, the MacDonalds switched treatment groups. They would have to begin with a fresh consultation with a new primary physician with a new group of doctors and hospitals. They would also have to wait for two weeks, but they hoped the temporary setback would push them further ahead than if they did nothing. On November 1, Susan met with her new physician who understood the gravity of her situation and referred her to a new pulmonologist.
A fresh start
Susan met with the new pulmonologist on Nov 7. He ordered a new CT scan, and the results of the scan showed that her effusion as expected was growing, and her right lung’s breathing capacity was steadily diminishing. Susan’s pulmonologist advised surgery, but since Susan’s HMO would not permit such a procedure for several weeks, he advised her to present to the Emergency Room of Hoag Hospital in Newport Beach that same day.
Susan’s pulmonologist met with her at Hoag that day and brought in a thoracic surgeon to perform a thoracotomy, pleural stripping, and a biopsy procedure. The surgeon made two incisions beneath the right arm and harvested tissue for pathological testing. He then insufflated talc to adhere the lung to the chest wall and prevent the recurrence of pleural effusions. He inserted a tube for drainage, which would not be removed for several days. Intraoperative frozen section analysis confirmed that Susan had a malignancy of unknown type. Susan’s surgeon told the MacDonalds immediately after the surgery that Susan had lung cancer.
Susan was assigned an oncologist who visited with her in the hospital and advised her that the pathology department had pinpointed the diagnosis as malignant mesothelioma. He wanted to administer chemotherapy immediately, but Susan declined, feeling that she needed more information. Susan was discharged the night before Thanksgiving.
A united family fights back
With the support of Geri and the help of Laurie, Susan began investigating treatment options. Everywhere she turned, she found either a lack of information, a glut of misinformation, or so much information that it was impossible to decide what to do. Reluctant to endure the traditional and taxing rigors of chemotherapy with no guarantee of meaningful results, she researched the possibility of Alimta trials at the CTRC in San Antonio. The family researched new treatments, clinical trials, and any surgical options for treating mesothelioma. She researched and reviewed information about Dr. David Sugarbaker at Brigham and Women’s Hospital in Boston, Massachusetts, and his extra-pleural pneumonectomy with heated chemotherapy wash.
Despite the merits of this and other programs, it was the pleurectomy/decortication procedure performed by Dr. Robert Cameron of UCLA that caught her attention. Both the EPP and the P/D are radical procedures, but Susan preferred to keep both of her lungs and felt that she would be more physically suited to undergo and recover from the pleurectomy/decortication. For a more complete discussion of the issues faced by a patient deciding between the two surgeries, please click here.
Pushing on with a pleurectomy
At Susan’s request, her oncologist referred her to Dr. Cameron. She was immediately pleased with his patient-oriented attitude. She felt comfortable, and summarized her needs with great eloquence: “I don’t want a cheerleader with all the rah-rah stuff, I just want a capable and honest doctor who will help me fight for my life.”
After spending an hour and a half in consultation with Dr. Cameron, during which she learned about the statistics surrounding her disease, the P/D procedure, and her eligibility for it, Susan felt a mild sense of relief that her treatment was finally moving ahead.
Compassion and resilience
Despite having to steel herself for the rigors of major surgery, Susan evinced true concern for other patients facing the same predicament. She and Geri had been side-by-side since they were children, and have been married 43 years, with five healthy grown children and six grandchildren. They felt fortunate to have one another and to have their family. They supported each other and worked together to force a recalcitrant system work for them. They faced an HMO that refused potentially life-saving requests, a doctor who lost a crucial part of her file, and staffers irritated that a united family would dare to enter the doctor’s office together and bother to ask so many questions. Susan thinks about the people she knows in the association she runs and others like them — most of them elderly, many without families — trying to get medical care and the answers they need. With those considerations in mind, she says with righteous indignation: “God help them, they haven’t got a chance.”
Susan adds: “I was unfortunate enough to have been in the first medical group and very fortunate to have switched into the new group and to have had this new group of doctors respond so quickly and so effectively on my behalf. I was also fortunate enough to have a family member who could devote all her time to working on my medical issues daily and another daughter who could stay with me continuously for support and care.”
At the same time, she resents the asbestos-producing companies that put profit over people, and exposed her to asbestos through her husband’s clothing during his career as a machinist in the navy. She and Geri were planning to begin building a home in Maine this summer near one of their daughters, and to continue enjoying their retirement. With the onset of Susan’s illness, they had to put their retirement on hold. Susan is the rock of her family, a dedicated wife and mother who devoted her life and beautiful spirit to her husband and children. She is greatly respected and dearly loved.
“I’m only 62,” she says. “We had great plans, and I was so excited about the future. I am young, and young at heart.”
Beating the odds
Susan MacDonald planned to live. She is a resilient and strong woman who intended to fight back against the disease and win. She rallied in her own personal fight against mesothelioma, and did it with the resources and support of a fully committed family. Together, they sought treatment, trusted in prayer, and counted on the blessings of God to get them through.
Five years after her pleurectomy/decortication surgery with Cameron, and five and a half years after being diagnosed with mesothelioma, Sue MacDonald and her family recognize they have been blessed. She was originally given a fourteen month prognosis, provided she recovered well from the surgery and the follow-up radiation and interferon therapies. As of March 2007, she has made it 63 months past surgery, but more importantly, she is not just alive, she is living well.
While Susan’s health limits her ability to do some activities, she doesn’t hesitate to shop, go to the grocery store, or take walks on the beach with her family. Sue works out with a personal trainer twice a week for about an hour and a half, working with weights and limbering up her upper body. For a portion of that time she walks on a treadmill, as well and works on breathing exercises, too.
Every four months, Sue has a CT/PET scan to monitor the cancer, which has been completely clear for years now. She continues to see Cameron for follow ups. “Sue’s the one that holds everyone together. She didn’t go sit in the chair and say it was all over five years ago,” says Gerri, and “that’s why she is here today.”