Bill Lee
Professor and Associate Dean
Jesse H. Jones Graduate School of Management
Rice University
Houston, Texas
wblee@rice.edu
My Journey Through Esophageal Cancer - August 2006
I asked, "What are the chances for five-year survival?" He said, "15%". When I recovered my senses, I asked, "Did you say one-five percent?" "Yes, I said one-five percent," he replied.
This was in my first meeting with Dr. Jaffer Ajani at the University of Texas M. D. Anderson Cancer Center in Houston. I recently had been diagnosed with Stage II-III adenocarcinoma of the esophagus.
I felt as if I had been hit by an 18-wheeler even though the enormity of it did not sink in until later. I had no idea how grim the statistics were. My wife, a registered nurse, knew, but she did not tell me. At the time of this writing, 22 months after my surgery, I am beating the odds. I am alive, I feel good, I am working at a job I love, and I am happy with my life.
What follows is an account of my journey from early symptoms through diagnosis, treatment, and life after treatment. I am telling my story of this journey so you, too, will know that this dread disease can be beaten.
How We Got There
In late 2003, my wife, Jane, and I were on vacation in India. I started having what seemed to be heartburn, which I had not previously experienced. But I thought it was a reaction to the spicy Indian food, which I was enjoying and probably was eating too much. We had taken some Pepto Bismol along for just this occasion. The Pepto caused the problem to go away, but it would come back. It continued even after we got back home to a "regular" diet.
Shortly after returning to Houston I had a regular appointment with my Internal Medicine physician, Dr. Cliff Dacso. Jane urged me to tell him about the problem, so I did.
He was perceptive enough to pick up on the problem. I sensed urgency in his voice. Rather than giving me a prescription for one of the heavily advertised heartburn drugs, he ordered a barium swallow. The results were suspicious, so an endoscopy was performed. It showed BarrettÕs Esophagus, likely caused by acid reflux, which I never knew I had. Plus, it showed an area which appeared to be a cancerous tumor, later confirmed with a biopsy.
What I Learned
I have learned a lot, and I have not quit learning. I suggest strongly that you do the same. Since I cannot enumerate everything here, I would just like to point out a few learnings that may be useful.
Early diagnosis is important but not the norm. I now know that "new" heartburn and pain or difficulties in swallowing should be investigated thoroughly. Don't accept a prescription for acid reflux or take one of the highly advertised over-the-counter products and just wait and see. Get a diagnostic work-up.
After a CT scan, a second endoscopy for staging, and discussions about treatment options, I decided to go to a large cancer center for treatment: the University of Texas M. D. Anderson Cancer Center in Houston. I had learned that, although on the increase, esophageal cancer is still rare and there are few real experts in the field like Dr. Ajani.
Seek out an expert in the field, not a general oncologist. Because this is a rare cancer, if at all possible go to a major treatment center that has a track record in treating esophageal cancer. Mortality rates vary widely. I was fortunate in having M.D. Anderson close by, but itÕs worth the travel if you have to.
In that initial meeting with Dr. Ajani, I finally recovered enough to ask more about the survival statistics. I am a professor in a graduate business school, so I know statistics and am a reasonably good statistician. Nevertheless it does not take advanced education to know that a 15% survival probability is pretty grim. I vaguely remember saying something to the effect that the 15% likely is a nationwide average. He agreed.
So, I said to Dr. Ajani, "I am a statistic of one, what about me? I have never smoked and have always been a light social drinker. My diagnosis was made relatively early. Furthermore, I am here, at M.D. Anderson, one of the top cancer centers in the world; I live in Houston and easily can come here for treatment. I also am willing to do whatever I have to do to beat this thing. What about me? What about my chances?"
Dr. Ajani just smiled and explained that his trials were showing "very good" results with as good as 65% five-year survival rates for cancers like mine, especially for those who respond well to the treatment and are able to tolerate the surgery. But, Dr. Ajani said that I would have to agree to several months of chemotherapy, then chemotherapy and radiation combined, and then surgery to remove my esophagus. I remember being much relieved about the statistics but afraid of what the treatment likely would mean for me. Nevertheless, the difference between 15% and 65% survival is pretty great. I suggested that we get started "right now."
Know that others have made it through chemotherapy and radiation - and you can too. The side effects are no fun, and help from family, friends, and/or support groups is essential.
My first treatment was chemo. Someone was joking (but maybe not!!!) and told me that they mix up a lethal batch of chemicals, back off 10%, and give it to you. If you are still alive after one, they do it again...and again...and again.
I had 12 weeks of once-a-week chemo treatments, skipping every third week. The chemo took all day with me lying in a bed hooked up to an IV for six hours. I could eat lunch but asked for anti-nausea drugs beforehand. Jane would have to be with me to drive me home. They sent me home with a fanny pack and another chemo drug, infusing with a portable pump around the clock for five days. I even slept and showered with it.
I generally would stay home for two or three days, go back to work for two or three partial days, and then do it all over again. I skipped the chemo every third week to recuperate. It made me very sick, so I needed the time off. I had vomiting and diarrhea Š sometimes simultaneously!!! There are wonderful drugs that really help. But there were no drugs to treat the fatigue, which was really beginning to get to me.
After 12 weeks of chemo, I was a really sick puppy! But then the bad stuff started.
Next was a combination of weekly chemo, the take-home fanny pack, and daily radiation.
The radiation took only a few minutes every day. M. D. Anderson tries to make it as easy and quick as possible with free valet parking and relatively short waiting times.
The combination chemo/radiation treatment took six weeks. For the last couple of weeks and the first couple of weeks after finishing it, I was really sick. I required IV fluids to keep me hydrated, and I lost a lot of weight. They told me to expect a cumulative effect from the treatment, and they were right.
For all practical purposes, I was out of work for about a month. I took my computer home and did some work there, but I was not very effective. But I gradually got better and began feeling almost normal.
I was looking forward with apprehension to surgery, scheduled for Wednesday after Labor Day in 2004. Dr. Garrett Walsh, a very experienced thoracic surgeon, wanted me to regain as much strength as possible. I was told that, "the worst is yet to come." Again, they were right.
To get as much enjoyment as possible out of my recuperation time prior to surgery, Jane and I spent several days at the Lake Austin Resort and Spa outside Austin, Texas. There was plenty for her to do, and I could do as much or as little as I wanted. I took a nap every day and read a couple of books. I got several massages and even had my first-ever pedicure! The food was delicious. It was so enjoyable that I almost forgot what was coming.
Seek out a surgeon with experience in this type of surgery and have the surgery in a hospital where there are nurses with experience caring for people with this type of surgery. There are vastly different mortality rates.
Know that others have made it through the radical surgery to remove the esophagus and, in my case, some of my stomach.
I was told that my surgery was more difficult and dangerous than heart surgery. My insides have been rearranged. My esophagus was removed except for a short nub at the top. The top part of my stomach was removed and the remainder was reattached to what was left of the esophagus. I was in ICU for five days and in the hospital for two weeks.
The great news was that the tissue biopsies showed that the chemo and radiation had eradicated all evidence of cancer. This put me in the group with the greatest chance of long-term survival.
Seek commitment from the doctors and hospital staff to controlling your pain immediately post-op. You will hurt, likely a lot. Do not hesitate to ask for pain medication. You get no extra credit for enduring pain!
Seek support, also, from experienced dieticians in learning to eat again. Initially, you will be fed through a tube - and that gets old pretty quickly. You will start eating frequently with soft foods in very small quantities. But gradually you will take more solid foods and get yourself off the feeding tube.
Live a normal life as much as possible after treatment. You will get stronger over time. I was back at work about two-three months after surgery. First, I went in only for a couple of hours and then more and more. About four months after surgery, I was back more-or-less full time.
It helps if you have supportive co-workers. I cannot say enough good things about then-Dean Gil Whitaker, then-Associate Dean Wil Uecker, and the faculty and staff of the Jones Graduate School of Management. They were all terrific.
But, I learned that I was not finished. Waiting for the next round of tests is stressful. But it's easier if you are busy with work, family, friends, hobbies, travel, or whatever makes you happy. You can go to a restaurant for a nice meal. Listen to your body; learn what works and what doesn't. Seek experts for post-op symptom control, including physical therapists and experts in pain control.
Life after Treatment
I did not know when this was diagnosed that the next few months were going to be the most agonizing in my life. But as this is written over two-and-one-half years after that initial meeting, I am still alive and generally feel good. I still have some pain, and I need some pain medications to get me through the day. I am working a full schedule as a professor and associate dean at Rice University. I lost about 50 pounds and have gained about 12-15 back. I have gotten my 22-months-after-surgery test results Š Dr. Ajani will not promise me that I have beaten it, but he says if I have any cancer cells in my body, he cannot find them.
If I can be helpful to anyone, please do not hesitate to e-mail me. Best wishes, good luck, and "never give up."