Once the initial shock of a malignant diagnosis is absorbed, patients and families need to practice due diligence to ensure the best possible and most appropriate care.
Malignant. This is perhaps the scariest word one can hear. It can cloud sound judgment and rational thinking. On hearing the diagnosis, the patient and family members may cry, deny reality, become depressed or experience different—and sometimes conflicting-- reactions. Respecting each other’s responses and working together to ensure the best course of treatment means overcoming the initial fear and moving toward informed decision making.
My mother was diagnosed with maxillofacial cancer in 1963, a time when the very words “cancer” and “malignant” stigmatized a patient, almost as if they described an incurable contagious disease. Frequently, patients lost their jobs because employers refused to reinstate them. The cost of care could be devastating, as medical insurance did not pay for all treatments nor for all kinds of prosthetic devices—and the devices themselves were unwieldy. As a result, people were often secretive about the disease and financially strapped.
Cancer care in the 1960’s occurred in a different environment. Doctors were rarely questioned, and independent resources for patient information were not generally available. Research and consumer education were in their infancy. Note that the federal government did not mandate warnings from the surgeon general on cigarette packages until 1966. And if you see pictures of the group of doctors who made this decision, the conference table is covered with ashtrays full of cigarette butts.
My memories are affected not just by time, but by the fact that I was kept out of the information loop. As with many in their generation, my parents saw it as protective. In reality, such a lack of knowledge feeds fears. So I really do not know how much information doctors provided about the surgery, including its outcome and its alternative options, and how much the adults in my family failed to absorb or understand the discussions.
Clearly, my father was taken aback when told that the results of the surgery were so extensive and permanent for my mother. The doctors said she would survive and function, but those terms mean different things to different people. For doctors back then, it meant successful excision of the tumor without recurrence; quality of life issues—the ability to eat, to sleep, to face other people—were marginalized, but those are the realities of the patient’s postoperative life. My mother never felt that the doctors’ preoperative descriptions of the outcome truly described the devastating impact of her extensive surgery. She was convinced that had she understood, she would have made different choices.
Fortunately, much has changed, particularly with advances in diagnostic tools, new research on causes and treatments, improved reconstructive surgery techniques and prosthetic devices, extensive public awareness campaigns and patient information programs, expanded physician training and the enactment of protective legislation. But, patients and their families must still do due diligence in selecting a medical team and making decisions about treatment. Although the fear that accompanies the diagnosis can never be entirely overcome, the first priority is to research and understand options.
Patients and their families should take advantage of public education campaigns that direct them to resources for checking doctor and hospital credentials and ratings. They should also consider clearly written and accurate reading materials, and support groups and patients who speak openly about their experiences. They should meet with surgeons, oncologists, radiologists, therapists, nutritionists and a host of healthcare professionals who can explain the options and help create a treatment plan. It is important to be comfortable with both the skill and approach of their team.
Before choosing a health care team, there are some questions that should be asked and answered. How do existing and previous patients rate the members of the medical team? Do they return calls and take the time to answer questions? Provide information resources? Explain follow-up care? Offer pre- and postoperative family support services? Will they discuss, if appropriate, end-of-life preparations? The Internet makes such research much more accessible, but care needs to be taken in choosing reliable sites.
Patients and their families should not let fear intimidate them. Ask questions! Do your research! Select a medical team that inspires confidence and comfort. A difficult journey is about to begin. At least feel comfortable with fellow travelers.
Knowledge is the most powerful weapon in overcoming fear, and “due diligence” leads to informed decision making. Not everyone survives cancer, but the patient and family should have confidence that every option was explored and the best ones selected.