There are more than a hundred types of cancer that creep into our bodies. I’m no expert on any of them. I can only talk about my personal experience, which is purely subjective and crudely limited in understanding. Still, shouldn’t a patient’s viewpoint merit consideration?
In my case, resecting the tumors required six hours of surgery, followed by six days of recovery in the hospital. But that was only the beginning. Keeping the cancer at bay—especially invasive, high-grade cancer cells like mine—is a long ordeal. Five years to remission, if I’m lucky.
Each post-operation treatment is unique. Would I be a candidate for immunotherapy? Chemotherapy? Radiation? Clinical trials? And when should the therapy begin? How long would it last? How many treatments would be needed in the first year? The third year? The fifth year? And to counteract the possibility of clotting, how long should I take an anticoagulant medication?
The questions and options were mind boggling.
And here’s the rub. Unless you’re a billionaire, there is no health agent to guide you through the maze—to learn what to do and when and where to do it. I’m not a billionaire; my financial status is more like chinaware: brittle and easy to break. I don’t have a chef, a chauffeur, or a personal trainer. And I certainly don’t have a private secretary. I’m just an average guy trying to stay alive. Consequently, I’m not only the patient; I’m also my own wellness advocate.
***
Let me offer a case. A month after my operation, I had to determine when, if at all, it was wise to terminate my use of my anticoagulant, Eliquis.
“To answer that question,” my surgeon said, “it would be good to consult with a cancer specialist. But the oncologist will want to study new CT and PET scans. I’ll place the order.”
But what did “placing the order” mean? And to whom? And would the imaging department contact me with a date and time to be scanned?
I reasoned my surgeon would contact my urologist who in turn would order the scans.
To test my theory, I called my urologist. After thirty minutes of wading through a phone menu and listening to an annoying music loop, a human being picked up.
I explained my dilemma.
“I understand,” a physician assistant said. “The hospital imaging department needs to be contacted to arrange an appointment. They probably have the electronic order from your surgeon.”
“Great,” I said. “Will you confirm the order was sent so an appointment can be scheduled?”
“Oh, we don’t do that. You need to call them.”
“Of course I do,” I said with no pretense to veil my sarcasm.
Next, I called the imaging department. A half hour later, a real-live woman answered.
“Oh, it’s so nice to hear your voice,” I said. “If you’re not in a serious relationship, would you have dinner with me?”
Not one for tomfoolery, the scheduler cut to the chase, her vocal folds sounding like they were made of brass knuckles. “How can I help you?”
“Right. I understand you have an order for a CT and PET scan for me.”
She checked her computer. “No order has been received.”
“What do I do now?”
“Have your surgeon fax us the order.”
“Can you make the request?”
“No.”
“Okay,” I said. “Once you have the order, could you call me to arrange an appointment for the scans?”
“No,” she said again.It seemed to be her favorite word. “It would be much faster if you called us,” she added.
“Right.”
I spent the next half hour trying to get my surgeon’s office. When I finally reached an assistant, I gave her the fax number to place the imaging order.
“Yes, we’ll take care of that.”
Wow! Action for the patient’s sake. What a concept.
An hour later, I called the imaging department. Again, it took me thirty minutes to reach someone with a pulse.
“Yes, I received the order,” the receptionist said. “But there’s a problem.”
My voice sagged. “A problem?”
“Yes. The surgeon used the wrong CPT code for the PET scan. Your Medicare insurance will not pay for the procedure.”
After a long withering sigh, I asked, “What’s a CPT?”
“Current Procedural Terminology.”
Yeah. Heaven knows you’ve got to get the words right.
Even though I knew the answer to my next question, I asked. “Would you contact my surgeon to solve the issue?”
“Oh, we don’t do that.”
Of course not. That would require effort.
So, I contacted my surgeon’s office. Another thirty minutes ticked off.
To shorten the agony, let’s just say the surgeon called the oncologist and reasoned they could live with going with the CT scan first. If the images proved problematic, they would then order a PET scan with the correct Medicare-approved CPT code.
The following day, I called the imaging department, explained the plan of attack, and, hosanna,an appointment was made.
It only required two glorious, fun-filled days to arrive at the finish line. (Oh, I’m sorry, was that scorn? Yes, it was. And it stands as said.)
Any human being with cancer is not just the patient but also his or her own wellness coordinator.
Wouldn’t it be nice if each doctor’s office had patient advocates—people trained to cut through all the medical mumbo jumbo?
Wouldn’t it be nice if each member of a medical team had a servant-leadership mindset, one whose mission would be “to serve the patient—happily, efficiently, effectively—thereby allowing the patient to concentrate on one thing: getting well?”
Wouldn’t it be nice?
***
There is an epilog to this chapter. I realize receptionists, nurses, and, in most cases, doctors are not responsible for these shortcomings. Often, they are simply cogs caught in the wheels of profit and bureaucracy.
Although I’m purely on the patient side of the issue, I suspect hospital consortiums and mega insurance companies contribute to the plight. Mercenary lawyers, a prolonged pandemic, and staff shortages are also triggering factors. Finally, private-equity firms intent on gobbling up specialty practices may be another piece of the perplexing problem.
Obviously, poor medical service is a complicated, multi-layered conundrum. Still, wouldn’t it be nice if the industry were characterized by sensitivity, compassion, courtesy, and dedication to a patient-centered credo. Otherwise, the world of medicine would be more honest to rewrite their mission to read “We Do It for the Money.”
