Alice, 58 years old, had worked as a librarian for 30 years. Always vigilant about her health care, she was diagnosed with small-cell lung cancer after a chest x-ray performed to help diagnose asthma. The x-ray and follow-up CT scan revealed a 4-cm tumor, with enlarged lymph nodes, in her left lung. This was a shock as neither Alice nor her husband had ever smoked. However, Alice's entire family, including her husband's parents, were or are chain smokers.
Almost immediately upon diagnosis, Alice began treatment, receiving cisplatin plus etoposide every 3 weeks for three cycles. When a CT scan showed that this combination of drugs was having no effect on her tumor, her oncologist decided to switch to weekly treatment with carboplatin and paclitaxel with concurrent chest radiation. These treatments continued for 7 straight weeks.
Alice experienced extreme fatigue and nausea from the chemotherapy and radiation. Since her tumor was located near her bronchial tube, the radiation damaged her esophagus, making swallowing difficult for months and ultimately causing long-term acid reflux disease. Ironically, her radiation therapy led to asthma for which she now takes a daily inhaler medication. Other late term effects from treatment included some slight residual neuropathy in her feet and problems with pericarditis.
Because of her myriad health concerns, Alice found it next to impossible to accomplish much of anything and decided she could not return to work. She eventually pursued Social Security Administration (SSA) disability benefits. Her initial application was denied on the grounds that she did not meet SSA's "guidelines" for disability. Incredulous, Alice immediately called the local SSA office seeking guidance. The local SSA officials told her that there was nothing they could do, but they encouraged her to file an appeal.
Alice had the good fortune of being related to one of the MCOP crew; naturally, she contacted MCOP for assistance in figuring out how to appeal the SSA denial. MCOP recommended that Alice secure letters from her treating pulmonologist regarding the short- and long-term effects of her cancer treatment. MCOP assembled a panel of experts in lung cancer to help explore which physicians were doing late-effects research on lung cancer and to help determine if Alice was indeed disabled within the SSA definition of disability.
The review panel found little organized information on late effects from the treatment of small-cell lung cancer. Her pulmonologist felt that she was lucky to be alive and really wasn't willing to get involved in the disability issue. Her oncologist concurred, noting that "there aren't many of you [long-term survivors] around." While the panel was happy to provide opinions based on personal clinical experience, they could not provide anything substantive to help with her appeal. Clearly, a different angle was needed to tackle this problem. MCOP suggested that Alice find an attorney who was an expert in Social Security disability (SSD) appeals. The SSD attorney indicated that claims such as hers are often denied the first time around. After reviewing her medical records, the attorney basically resubmitted those records and requested an appeal hearing. Much to Alice's surprise, her appeal was granted without a hearing, and her benefits were made retroactive to her first application.
Alice decided to become an unofficial advocate. She joined a small-cell lung cancer online support group and relayed her success story involving SSD. As a result of this information sharing, some of her support group also had the same success with and without attorneys. The group has become a helpful ally to other patients in similar situations.