The Survivor Center
My new patient and his wife have entered the “cancer world,” a place where nothing is familiar. He clutches a self-help book but mostly sits in stunned silence. Share on Facebook
“We never even thought about cancer before!” his wife tells me. “Never! We knew nothing about it until last week when the doctor gave him the diagnosis!” She pauses and looks protectively at her husband. “We have been reading nonstop ever since then. It is all so overwhelming!”
She has a pile of internet downloads and a notepad crammed with carefully numbered questions. Why did this happen? Shouldn’t the cancer have been discovered sooner? Are the kids at risk? These two internet sites have completely opposite recommendations! What about lasers and robots? What clinical trials are available? What tests can be performed today? Can he have treatment closer to our home? Our daughter is getting married in three months! The side effects described on this site are terrifying! Can we start treatment tomorrow?
Initial office visits were very different when I first started caring for cancer patients in the 1980’s. In those days, people often arrived with no information and, sometimes, had not even been told they had cancer. Most people could, however, recall a family story about a distant relative who had suffered through treatment years before. “She developed a terrible burn and then died,” they would recall. “There is no way I will take any radiation!” Thanks to the internet, my task has shifted from providing very basic information to sorting out the competing information already encountered.
Cancer survivorship has also changed. Twenty years ago, survivors often felt completely alone, lamenting that they had no one with whom to share their concerns. Back in those days, a regular group of my patients met weekly just to talk. The group disbanded as survivors turned increasingly to the internet. Social media allow a 24/7 connection to survivorship sites, blogs, discussion boards, reflective writing and even survivor-created artwork.
What has not changed? The statement, “You have cancer,” still brings pain and fear. The reassurance, “You no longer have cancer,” can sometimes bring doubt and uncertainty. Patients are overwhelmed by the diagnosis, the well-meaning advice, the tests, the treatments, the appointments and the information overload.
Not long ago, I realized that I see about four times as many people for follow-up visits as I do for initial visits. In other words, I see many more people who have been cured of cancer than I see people who have cancer. For every patient who needs a plan of cancer care, four will need a recheck and encouragement. For every patient needing teaching about what is to happen next, four will need reassurance the things they are experiencing are common for other survivors as well. For every patient scheduled for surgery, I will try to help at least four leave behind their fears.
My new, anxious, overwhelmed patient will complete his cancer treatment in several weeks. He and his wife will struggle through the ordeal and, once the treatment is complete, they will enter the “survivor world,” full of its own mysteries and overwhelming experiences. Our “Cancer Center” will become, for them, a “Survivor Center.” It will be a good place for us to meet once again.
This post is reprinted from the Froedtert & Medical College of Wisconsin 2011 Clinical Cancer Center Special Report.
Posted 3:06 PM
Far From Home
When I hear somebody sigh, "Life is hard," I am always tempted to ask, "Compared to what?" Share on Facebook
- Sydney J. Harris
I recently was privileged to hear Dr. Claire Wendland describe two groups of medical trainees.
The first was a group of medical students from the United States spending time in the sub-Saharan African country of Malawi. Each day, the students learned from their American professors and African colleagues. The students were surrounded by patients with diseases that they had previously encountered only in textbooks and lectures — malaria, untreated HIV/AIDS, the late stages of tuberculosis. Many patients had very advanced disease or long-neglected illness. The students were immersed in a medical system that relied heavily on improvisation. The medical facilities had inconsistent electricity, limited imaging studies and bare-bones laboratory testing. The students also noted that the Malawi hospital had none of the American obsessions with billing and record keeping.
The second group she described was the Malawi interns working at the institution the American students were visiting. The interns were very bright and, compared with their African peers, most fortunate. Because of the lack of technology, they had very well-developed physical examination skills. Their hard work and long hours were rewarded with a salary of $11 per day.
The next phase in the lives of the American students would include residency interviews to prepare for their careers. Many hoped they would eventually be able to pay off their burgeoning educational debts, some of which approached $200,000.
The next phase in the lives of the Malawi interns would include assignments in rural health clinics and a slim possibility of obtaining a residency. Many would be willing to accept any opportunity to train and work in America or Europe.
The students from America envied the Malawi doctors their finely honed skills and their chance to practice medicine “closer to its roots,” free of bureaucracy and paperwork.
The doctors from Malawi envied the American students their unlimited opportunities and the chance to practice medicine with the latest in technology, devices about which the Malawi doctors had read but had never actually seen.
Both the American students and the Malawi doctors thought that the other group was very fortunate. You see, each group wished that they could spend their working lives in an environment where they would always be able to have the “real doctor experience.”
Posted 11:17 AM
The Doctors' Dining Room
What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others. (attributed) Share on Facebook
Before I went to medical school, I worked as an orderly in a private hospital. It was not glamorous work, but I loved the people. It was there that I had my first glimpses into the joys and sorrows of Medicine.
Like most hospitals in the early 1970’s, ours invested few resources on amenities, technology, or marketing. Patients stayed many days or even weeks for relatively minor illnesses. The X-Ray Department’s new, painfully slow CT scanner could only study the brain and was frequently out-of-order. The doctors, particularly the surgeons, were supremely confident in their skills, having been steeled by service in military hospitals in Europe and the South Pacific during World War II. The last remaining general practitioners finally gave up delivering babies, but they still set broken wrists, lanced boils, performed minor surgery, and made house calls.
In those days, each patient’s own personal physician managed his or her care whenever they were hospitalized; I remember seeing the internists and family doctors arriving early in the morning to make rounds before heading to the office. If they had six or seven people in the hospital, rounds would take a while. The physicians returned to the hospital before they went home in the evening, as well. On their days off, they made rounds only once unless someone was particularly ill.
The hospital’s cafeteria was nothing special. A single, long serving line ended as the cash register. The families and employees spilled from there into the large seating area with rows of Formica tables and plastic chairs. Long lines and crowds were normal at lunchtime.
A doorway off of the seating area led to the “Doctors' Dining Room.” Although I never actually entered, I often peeked in to see what was happening. Their dining room was less crowded than ours. Sometimes, there would be a lecture and, on those days, a table would hold free sandwiches, chips, and sodas. Other times, the doctors would be seated in small groups, talking and laughing. Some would have pushed their trays aside and, in those days, would be smoking cigarettes, using their dessert plates as ash trays.
I am a child of the 1960’s, and freely admit that the very idea of a “Doctors’ Dining Room” seemed elitist. Why did they get their own room? Why did they get a free lunch? It seemed wrong! We spent our lunchtimes plotting to crash their room and sit at their tables. We never did, of course.
Perhaps, in retrospect, the “Doctors' Dining Room” was elitist. However in those days before HIPAA, the room provided a safe place for doctors to discuss patients without risk of being overheard. Before the Internet, it was the only place besides the ancient hospital library where a physician could gather information or pick a colleague’s brain about a difficult case. Before the pharmaceutical companies allocated astronomical budgets for marketing to doctors and the public, the room was the only place where a busy, solo practitioner might learn about new medications.
I returned to the old hospital a few years ago to visit an old family friend. After the visit, I stopped by the cafeteria. The serving line had been broken up and rearranged a bit, and there was now a short-order grill, a Grab-and-Go counter, and a salad bar. After paying for my meal, I stepped into the dining area and was transported back in time. I immediately noticed, however, that the wall between the seating area and the “Doctors’ Dining Room” had been removed.
The cafeteria was not crowded and I intentionally found a table in the area that had once been off-limits. As I looked around, I reflected on my journey since my days working at that hospital. I gratefully remembered stories of many of the old physicians who had once gathered in that space. Thanks to them, I am still learning each day of Medicine’s joys and sorrows.
Posted 11:08 AM