Marc's Esophageal Cancer Story

diagnosis | surgery | chemo & rad | afterward | resources

diagnosis - february 1995

The technical name is Adenocarcinoma of the Esophagus.

Most of us simply call it The Beast.

I was diagnosed with esophageal cancer (EC) in February of 1995, a few weeks before my wife Tammy and I were going to Cancun for a much needed vacation.

Prior to my diagnosis, my only knowledge of EC was that it had killed a close friend of mine several years earlier. John Kasper was 39 years old, a master of trivia, keeper of the "Lava Brats" (Bratwurst simmered in a variety of almost toxic peppers, kraut and onions), and someone I miss dearly. All of his friends and family still have a party in his memory on his birthday on July 4!

I had been fairly involved with a lot of hot projects as a software engineer. In that profession the deadlines are critical and the tasks are always greater than anticipated. When I started having an occasional problem swallowing in September of 1994, I dismissed it to being rushed, eating too quickly, a hiatal hernia, or whatever sounded like it wasn't serious. Gradually, the symptoms got worse, so in late January of 1995 I made an appointment with my GP.

After reviewing my lifestyle (5-6 hours of sleep a night), my diet (20+ cups of coffee a day) and my vices (2 packs of Benson & Hedges a day) he wondered why I hadn't crashed and burned earlier. He initially didn't suspect EC, just poor maintenance on my part. I ended up having an x-ray that day, and a barium swallow (yummy) a day later. The results showed this funny kink (called a dysplasia) in my lower esophagus just above my stomach. Now things were starting to look scary. An EGD was scheduled to check things out further. (an EGD is a procedure where they go down the esophagus with a small camera to see what's going on and perform a tissue biopsy). The EGD pictures looked worse than the swallow x-rays, and the biopsy revealed The Beast... Adenocarcinoma of the Esophagus.

My diagnosis introduced us to the twilight zone world that all cancer patients encounter. The immediate panic of a death sentence, mixed with the ultimate confusion of what to do next. While dreadfully worried, Tammy and I both believed that "God isn't through with me yet" since there had been plenty of opportunities for him to snatch me if that was in the game plan. For a time Tammy started hating all healthy men.

Being the computer nerd that I am, I started digging for information on EC. I also had a good friend in Milwaukee, Dave Neumann, fax me just about every EC study that he could lay his hands on (he took out two FAX machines in the process, and tied my company's machine up on and off for the better part of a week). Generally this served only to fuel my "I've got to go with it again, Emily. You die." perspective, because 5 year survival was being rated slightly less than one in ten. Oh joy!

On the "net," I met a radiation oncologist, Dr. Mark Brenner, in Maryland who calmed me down, explained that I wasn't going to die in the next 24-48 hours, and gave me a "corrected" perspective on selecting a treatment plan and location...

I initially went to a regional cancer center armed with knowledge of the current "state of the art" treatments for EC (thanks to Dr. Brenner and Dave). While I really liked the medical oncologist there, I discovered that the only treatment option there was surgery followed by a randomized study (flip a coin) of follow-up chemotherapy. I wasn't thrilled by these options, since chemotherapy hadn't been shown to be all that effective against adenocarcinoma (hence the poor odds of beating The Beast). Current aggressive treatment adds a radiation arm to the surgery and chemotherapy, making it a three modality protocol involving surgery, chemo and radiation. From what I had read, a person doesn't get much more than one shot at this game, and I wanted my treatment to be the best shot possible. Now I was depressed, because it seemed that I was being excluded from that option because of the limitations at my cancer center.

I spoke again to Dr. Brenner, who agreed that I should get a second opinion. Since I'm in the center of Wisconsin, he recommended the Mayo Clinic in Rochester, Minnesota, the University Hospital, in Madison, or the Medical College of Wisconsin in Milwaukee. I had this strange perspective that only the "Rich and Famous" go to the Mayo Clinic. Maybe that's the aura of the place, but after the owners of my company (1) started nudging me in that direction, that's where I went for my second opinion. Dr. Brenner spoke highly of a radiation oncologist at Mayo, a Dr. Len Gunderson, who had administered Dr. Brenner's board exam, and is one of the top rad-oncs in the world. I called Mayo and asked to speak with him... "Sorry, he's not available now, can I have your number?" It was, more or less, what I expected. He called me back within the hour (2) and I was scheduled to meet with him on March 2, 1995, my middle daughter, Gwen's, 10th Birthday.

Once we got to Rochester, it was obvious to us that we were in the right place. If you've never been to Rochester, you don't know what you're missing. It's a beautiful city of about 70,000 friendly people, stuck in the middle of nowhere in Southeastern Minnesota. It's also a two company town... IBM and Mayo. The clinic encompasses two hospitals and about a dozen or so buildings in the downtown section. I'm not originally from a small town, so when I say I was in awe of the facilities it says a lot.

I met with Dr. Gunderson and he examined me and reviewed the package of x-rays and CT scans that I brought along. The scans were of a fairly poor quality, so I had another series done. The results clearly showed a 6 cm tumor just above the stomach junction. We discussed treatment options, which boiled down to a recommendation of combined chemo and radiation, either before or after surgery. I reasoned that my recovery from surgery would be better if I had it first, and he concurred. I met with Dr. Trastek, the Chair of Thoracic Surgery at Mayo later that day, and we scheduled my surgery for March 6th.

diagnosis | surgery | chemo & rad | afterward | resources

Photo - Marc in Yellowstone National Park, August 2000 - Tammy's version of National Lampoon's Family Vacation, complete with rented 29' RV.

1 - The owners of my company were Judy and Terri Paul. At the time of my diagnosis, the company had less than 100 employees, and I was one of five people in our software engineering group. When I was trying to figure out how to best pool my vacation and personal time, Judy told the payroll department that I was to be kept on full salary during my treatment. I can't express how wonderful this was, as it removed the significant worry about finances due to an extended absence from work.

All told, I missed about 9 weeks through the surgery and subsequent treatments. The company provided me with a Macintosh PowerBook during my chemo and rad, more so I could feel useful rather than expecting anything productive. I made the best use of my "free" time and actually contributed software components during this period... some of which are still in use today.

2 - Dr. Gunderson initially asked me what the morbidity and mortality numbers were for the cancer center I went to first. I had no clue!

I later determined that he was letting me know that the most important part of the process was taking charge of your own medical care and finding the best medial options. Many people don't understand this.