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How a kidney cancer survivor became a partner in his care

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from cancer survivor and advocate Michael Lawing.

My life changed forever on a cold rainy November afternoon in 1997 as I sat in a crowded emergency room. A surgical urologist knelt beside my chair and uttered five words, “You have cancer; it’s bad.”

A week later, the day after Thanksgiving, a huge tumor that had completely enveloped my right kidney was removed.

Prior to that diagnosis I had never heard of kidney cancer and had little experience with the medical community. I had not been to a doctor in years and viewed that profession as one filled with persons who had a good education, commanded a lot of respect, had a luxurious lifestyle, and enjoyed a life of relative ease. As it turned out, I was not only ignorant about kidney cancer, I had a lot of misconceptions about doctors and the entire medical profession.

I now view medical appointments in much the same way that a salesperson would view appointments with prospective clients.

In 2000, I was referred to a specialist in a medical center some 90 miles from my home. This oncologist was knowledgeable about the only treatment that had any degree of success in kidney cancer, a very rigorous infusion therapy with many side effects that required hospitalization.

A year later, cancer was found in lymph nodes in my abdomen, and I entered the hospital to begin treatments with interleukin-2 (IL-2). Although I had been impressed by the patience and skill of this doctor, it was during the IL-2 treatments that I began to really see his commitment and dedication to his patients.

His daily schedule was impressive. The doctor would arrive each morning at 6 a.m. to review the treatment notes of the two or three patients receiving IL-2, pay each of us a visit and then would be off to see patients in the clinic or to perform surgeries. He would usually stop by during the day and he would always come by in the afternoon or evening before going home. That visit would often be after 6 or 7 p.m.

In addition to those visits, he had to be called by the nurse prior to giving an infusion to a patient. Since the patient could receive an infusion as often as every eight hours if everything was okay, this meant a call to his home in the night; sometimes he would receive several calls if patients were on different schedules.

In the ensuing years since those treatments, I've come to realize that the vast majority of doctors, nurses and other healthcare professionals have a very similar commitment and passion for their work. It is therefore only reasonable that I should honor that commitment and passion when I'm seeing them for an appointment.

I try to be on time and to be prepared to get the most out of our meeting. I now view medical appointments in much the same way that a salesperson would view appointments with prospective clients.

I prepare a list that details any information I need to tell my care provider as well as questions that I need to ask. It includes the medications I'm on, as well as prescriptions that I need to have refilled. I take notes, even to the point of recording them so that I can review them later. If there are any words or phrases that I may have difficulty in understanding or in spelling, I ask for additional explanations as necessary.

If I have diagnostic imaging that is being reviewed, I tactfully request not only a printed copy of the imaging results but I also ask to look at the images themselves in order to gain a better understanding of the areas we are discussing.

The first couple of times I tried this more interactive approach, it was awkward and slightly difficult, but it conveyed to the medical team that I was serious about the care I was receiving.

That process has allowed me to learn a lot about my condition, to be a participant in deciding my course of treatment, and to develop a great relationship with my healthcare providers.

Michael B. Lawing is a director of the Kidney Cancer Association and is involved in many cancer advocacy activities.

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