Diagnosing Esophageal Cancer

Getting older means, inevitably, that you see much more of doctors than you ever wanted.

Terry has been seeing what he regards as his fair share for many years. Before we met, he had been significantly overweight, and was diagnosed with Type II diabetes. The list of side effects scared him enough to make him lose 100 pounds, and he has kept it off. Oh, his weight would go up and down a little, but he never had to be on any medications. Completely diet-and exercise controlled for 25 years, baby!

He has been a participant in the CRIC Chronic Renal Insufficiency Cohort study at the University of Michigan for 5 years - this is a study of kidney function in Type II diabetic men. These longitudinal studies are so valuable.

Shortly after I finished treatment, Terry started having some trouble with swallowing food. We thought that he wasn't chewing his food enough - every once in a while, he would choke. The choking got worse, especially when he was eating something dry. Like, running around eating toast and peanut butter while trying to get the kid out the door for her senior year in high school. Suddenly, the food would get stuck, and if he tried to wash it down, he would be coughing up phlegm for an hour or more. The third time this happened, he passed out and fell on the tile kitchen floor. We spent a whole morning in the ER, before they referred him back to his Primary Care Physician (PCP). Of course, being a guy, he didn't go.

A few months later, we took a short vacation up in Frankenmuth, and the same thing happened. Well, he didn't pass out, but he was sick for several hours.

Sure sounded like an esophageal stricture to me - so I started, like any good wife, to nag.

Finally, in June, 2009, a year after our daughter graduated high school, he changed doctors, as his PCP was in Ann Arbor, and he just didn't want to drive that far. He reluctantly mentioned the swallowing problem to the doc, who recommended an endoscopy and dilation. This was scheduled for July 17.

Since I was working a new job, and Krista had just gotten her driver's license, we decided that she would go with him as the driver, as he was having anesthesia. Bad idea. They found suspicious cells, and Terry was almost totally out of it. And she didn't understand most of what the doctor said. I swear, God, I'll never miss another procedure.

The following week, they did an ultrasound under anesthesia, with a biopsy. We knew it wasn't good before the doctor came out, and it wasn't. They thought they saw at least one positive lymph node. Oh God. The recovery room nurse was a gem. Her father-in-law had had EC, and she talked to me for like 15 minutes about what we were facing - she talked about feeding tubes, and radiation, and how to help.

Next stop, at the gastroenterologist's hospital, is the surgeon and an oncologist. Guess who was on vacation. So, for 10 days, we worried and fussed.

The surgeon's office was supposed to order a PET scan, according to the gastroenterologist's office. But, since the doctor was on vacation, the scheduler asked the gastroenterologist's scheduler to order a CAT scan.

When we got the paper work, we were like - oh, someone's made a mistake. So we called. Neither the surgeon's nor the gastroenterologist's scheduler could do anything - basically, although they had ordered the tests, they were incapable of acting on patient's questions. I called the oncologist's office, although we hadn't seen him yet. We figured, since I saw another doctor in the same practice, that they would at least check the test. Oh, wrong. Couldn't be bothered. Asking questions was a violation of HIPPA, since husband wasn't officially a patient. Well, actually, I called MY oncologist, not his, but the nurse's job in this practice is to make sure that no patient phone calls get through to the doctor, and my doc's nurse Chris does a wonderful job.
I cried and yelled, I begged.

We finally called the oncall thoracic surgeon. Only 8 phone calls before we could get to somebody who would talk to us. He called the woman who wants to be our surgeon, and they changed the test to the proper PET.

Hard to believe that one of the first things they tell you when you enter cancer treatment is to avoid as much stress as possible. The doctors and their staffs are the primary cause of stress.