On the other hand, patients, family members, and my patient-care team have told me that I am quite solemn when I walk in a clinic room to deliver bad news. No “light-hearted” chatter or discussion of recent family events or outings. The nervous, hopeful smiles on the faces of the patient and the family or friends in the room quickly fade as I describe what I am seeing on the blood tests and scans. Friedrich Nietzsche, the pejorative poster boy of pessimism, is credited with the aphorism, “Hope is the worst of evils, for it prolongs the torments of man.” Thankfully, he was not involved in the care of people with cancer or other chronic illnesses. A particular woman comes to mind when I remember the importance of dealing with both the highs and the lows of delivering news to cancer patients.
The patient was the wife of an emeritus professor of engineering at a prestigious American university. Mrs. Professor had a grapefruit-sized, malignant, vascular tumor called an epithelioid hemangioendothelioma, or EHE, in the center of her liver. It’s a mouthful of a name for a rare, malignant tumor of the liver. She had seen surgeons at several other hospitals in the United States and was told that the tumor was inoperable and untreatable and that if she was lucky she might live a year.
The professor contacted me, and I examined Mrs. Professor and evaluated her prior scans. Not only was her tumor in an unfortunate location but it was wrapped around two—and abutting a portion of the third—of the three veins that drain all of the blood out of the liver into a large blood vessel called the inferior vena cava. As a hepatobiliary surgical oncologist, I knew I must preserve at least one of these veins to allow blood that flows into the liver to flow back out properly. I ordered some additional high-resolution images to better understand the appearance of her tumor, and I realized it had a very thick fibrous capsule surrounding it.
I explained to Mrs. Professor and her husband that it might be possible to remove the tumor, but it would be challenging. Suddenly this lady who had been sullen, withdrawn, and tearful every time I had met her previously looked up and said, “If there’s any chance, I’m willing to take it! I am determined to fight this cancer!” The next week I proceeded to surgically remove the entire left lobe and a portion of the right lobe of her liver. And I was able to gently dissect the tumor capsule from the third hepatic vein. The operation was successful and Mrs. Professor recovered well over the next several weeks.
The professor knew a thing or two about scientific investigation, statistics, and assessments of probability, and, having lots of time on his hands, sent an acerbic letter to the physicians at the other hospitals. In it, he explained in detail his mathematical analysis of the fallacy of their prognosis when considering an individual patient in terms of a statistical mean. He pointedly informed them that it was impossible to predict if any given individual would fall near the mean or several standard errors away from the mean. In plain language, predicting the length of survival of cancer patients is usually based on data from the life-span of a large number of people diagnosed with the same disease. Some people live for a shorter—possibly much shorter—time than the average, while others live significantly longer than the average survival time. The professor concluded, prognostication regarding cancer survival was imperfect at best—particularly since I had successfully removed the tumor (yes, he added that final detail in his letters). Unfortunately, for the next year, when I would encounter these various surgeons at national or international surgery or cancer meetings, I would get some frosty stares and very little conversation.
For the following three years, I saw Mrs. Professor every four months, and with each visit I would enter the room smiling and pleased to report that all looked good on her blood tests and scans. But three and a half years after her operation, the nature of the clinic visit, unfortunately, changed. The moment I entered the room the professor said, “Uh-oh!” Mrs. Professor immediately looked crestfallen and asked, “What is wrong?” I sat down and explained that there were new, small tumors in her liver and lungs. She asked how this could be possible since she felt so well, and I countered by informing her that small tumors frequently do not cause symptoms or problems that make a patient aware of their presence. I spent almost an hour answering an array of questions from Mr. and Mrs. Professor, many of which were different ways of asking me to predict the future and her probable longevity. I repeatedly explained that the tumors were a bad prognostic finding, and that her particular type of tumor was generally quite resistant to chemotherapy. She stated openly that she had no interest in taking chemotherapy or other treatments that would adversely impact the quality of her life.
She finally looked at me with tears in her eyes and asked, “Does this mean I won’t see you again?” I immediately replied that I would continue to see her on a regular basis throughout her life and that, in my opinion, part of the job for all of us in oncology was to support and care for our patients through all phases of the disease, even when our treatments failed to eradicate the malignancy. I also confirmed that I respected her decision to decline chemotherapy treatment, and I would be available to assist her at any time. Mrs. Professor smiled wanly, and said she was relieved to know my colleagues and I would treat any symptoms and help her, should she develop any discomfort or other problems. I arranged for consultation visits with physicians from our palliative care service, and I continued to see my patient and the professor every three months for another year.
Approximately fourteen months after her cancer recurred, the professor called me and said that his wife was fading rapidly and they would not likely see me again. A month later I received a poignant and personal letter. In it, the professor included his wife’s obituary from the local newspaper. It chronicled her impressive array of accomplishments and interests enjoyed over the course of a life lived fully. There was also a small hand-painted watercolor card from Mrs. Professor with a note to me. In it, she thanked me for giving her hope at that initial visit when I told her that it was possible to operate on her. She then wrote something I will never forget, “When I saw the other doctors, I felt rejected, trashed, and discarded. I felt they were dismissing me because they could not remove my cancer. All my hope was killed.” The note went on to thank me for giving her several additional years of life to enjoy traveling with her husband, spending time with friends, and other activities that were important to her. I make no apology to Friedrich Nietzsche or his acolytes, for I know that the death of hope is a much greater torment for patients than the presence of hope.
Delivering and receiving bad news is difficult for everyone involved in cancer care (and any other area of medicine, for that matter): the patient, family members, friends, and physicians and members of the medical and nursing teams. There is an emotional toll on all of us. We can, however, deliver bad news with compassion and care, and that should be the goal. Patients have the right to know if they are facing a battle with cancer that they will ultimately lose, but they also need to hear a confirmation their physicians and other medical professionals will fight alongside them and support them and their family members.
One thing I learned early in my career is that patients may fear they will be abandoned when the medical community can no longer alter the progression of their cancer. Recall the words written by my patient, “I felt rejected, trashed, and discarded. I felt they were dismissing me because they could not remove my cancer.” Regardless of the outcome, I believe we doctors must fight the battle side by side with our patients to the end, providing hope tempered with realistic expectations, compassion, and reassurance that we will be there to help throughout the process.
4
You Can’t Make This Stuff Up
“Once we believe in ourselves, we can risk curiosity, wonder, spontaneous delight, or any experience that reveals the human spirit.”
e. e. cummings
Wonder: A feeling of amazement and admiration, caused by something beautiful, remarkable, or unfamiliar
I was looking forward to seeing a septuagenarian patient of mine whom I expected to be m
y first true five-year survivor after resection of a Klatskin tumor. A Klatskin tumor is not some type of weird cancer, it actually defines a cancer in a specific location. Dr. Klatskin was the first physician to describe a cancer at the junction of the right and left bile ducts at the base of the liver where they join into a single trunk to drain bile into the intestine. (Bile is important as it helps the intestine absorb many types of the foods we eat, particularly proteins and fats.) The technical name for this type of cancer is cholangiocarcinoma. Most patients go to their doctor when their eyes and skin turn bright yellow from this small tumor that blocks the bile ducts, causing bile to back up into their liver like a clogged sink. If bile does not drain normally from the liver into the intestine, levels of serum bilirubin rise; it is the elevated bilirubin that imparts a yellow color to the skin and eyes.
The gentleman in question had presented with this yellow condition, called jaundice, and had undergone testing that revealed a small tumor blocking both bile ducts of his liver. The tumor was growing slightly up into the left bile duct so I performed an operation that removed the entire left lobe of the liver and a portion of the right lower liver. I also resected the external bile duct below the tumor and the back portion of the liver, which is called the caudate lobe, to assure that all cancer had been excised. The operation was complete when a loop of small intestine was brought up to the base of the liver and the remaining right bile duct was sewn directly to the intestine. This allowed normal drainage of bile into the intestine.
My patient lived on a ranch and had been a hardworking ranch foreman his entire life. He was lean and fit and came through the surgery and the postoperative recovery remarkably well. Few patients survive many years after this operation because this cancer has a tendency to come back in other areas of the body. However, this gentleman had been doing well on all of his checkups. I noticed he was on an upcoming clinic schedule so I was excited to congratulate him on five years of cancer-free survival.
Two weeks before his appointment his daughter called and said, “I’m sorry to tell you, but Daddy died.” I was stunned; he had looked great when I had seen him six months earlier. He’d been vibrant and active, with no other medical problems. I was concerned the cancer had recurred and we had not seen it on the previous scans. Still, I reasoned to myself, perhaps he’d had an unrelated problem, such as a heart attack or a stroke, that had felled him unexpectedly.
I stammered out my condolences to the patient’s daughter, and then asked, “How did he die?” To my amazement, his daughter told me that two days earlier her father had been out working on the ranch as usual. He noticed a solitary bull in the field and for reasons clear only to him, he decided it would be a good idea to play matador. With several ranch hands watching, he climbed over a fence, took off his jacket, and used it as a cape enticing the bull to charge him. The bull obliged and promptly gored him in the leg, severing his femoral artery and vein. My patient had bled to death from a bull goring. How do you score that in your cancer-survival statistics?
I always provide my patients with a standard set of instructions when they leave the hospital after an abdominal (liver or pancreas) surgery. Walk two to three times daily; eat a healthy, high-protein diet (especially after liver resection when the liver is regenerating and using extra protein); drink plenty of water to prevent dehydration; and avoid pushing, pulling, moving, or lifting anything heavier than twenty pounds. This last limitation is to allow the sutured closure of the abdominal wall muscles adequate time to heal and become strong enough to avoid an incisional hernia. (A hernia develops when there is an opening within an area of the muscle wall somewhere in the body and the intestine or some other structure pushes out. Many people know about a groin hernia, which is also called an inguinal hernia.) I ask my patients to adhere to these recommendations for at least six weeks after the operation.
One afternoon, I was in my office and my secretary informed me I had a call from a patient’s wife. Four weeks earlier, the patient had undergone removal of the right lobe of his liver for a colon-cancer metastasis. I picked up the phone, greeted her, and asked if all was well. With a thick Texas drawl she reported that all was not well and that my “fool patient” had injured himself. Before I could say a word, I heard her cover the phone and shout, “Come in here and tell Dr. Curley what you did!”
After a few moments’ pause, my patient came on the line and said self-consciously, “Hi, Doc.” In the background, I could hear his wife yelling at him to tell me what he had done to injure himself. “Well, Doc, you know how you told me not to do any heavy or strenuous lifting?”
“Yes, that’s right,” I replied.
“Well, I didn’t,” he said with a hint of defiance.
Once again, hollering from the background, “No, you didn’t lift anything, but you just tell him what you did!”
After a longer pause, he astonished me by telling me I had failed to mention he could not use his riding lawn mower. Furthermore, since he had about three acres of yard and “grass don’t cut itself,” he decided getting on the lawn mower would not break my strenuous activity rule. As he was telling the story, it sounded more and more ominous.
“Okay, so you mowed your lawn on a riding lawn mower. What happened?” I inquired.
Thankfully, this conversation was taking place on the phone so my patient and his wife could not see the look of complete incredulity on my face when he told me, “I was feeling pretty good so all of a sudden, I decided to pop a wheelie on the lawn mower.”
Now that was a phrase I had not heard before. I had popped wheelies on my bicycle as a boy, and I had seen trained riders do it on motorcycles, but never had I witnessed or heard of a riding–lawn mower wheelie. Flabbergasted by the unfolding saga, I waited. “So anyway, Doc, long story short, I fell off the back of the mower and when I landed I felt a ripping in my belly incision, and now there’s a bulge there. I think I have a hernia,” he finished matter-of-factly.
I managed to keep a calm and respectful tone in my voice and restrain my laughter. I asked the patient and his wife to come to my office that afternoon. Sure enough, Mr. Pop-a-Wheelie had disrupted the entire length of his muscle closure. Only a thin layer of skin stood between his bulging intestine and the outside world. I looked at him, shook my head, and stated, “Unbelievable. You just invented a new postoperative complication.” His lawn mower adventure earned him a trip to the operating room that afternoon to reclose the abdominal wall muscles. I certainly never thought I would need to include “no popping wheelies on any vehicle, particularly a riding lawn mower,” as a part of my standard postoperative directions.
Along with giving my typical recovery instructions, I ask my patients to avoid alcohol for six to eight weeks after a liver resection to allow regeneration of healthy liver. For one of my patients, this request was particularly problematic. He informed me during our preoperative visit that he was a professional beer judge. He had a regular office job during the week, but on weekends he would travel all over the country and judge brews in regional or national competitions. I explained that I felt strongly about the alcohol-avoidance issue, and he reluctantly agreed to abstain. As humans like to do, he reopened the negotiation five weeks after his operation. He called and informed me he had been given a singular honor. He had been asked to travel, all expenses paid, to Munich, Germany, to judge in an important international beer festival. Well, even I know enough about beer to know that a Bavarian beer festival is something akin to the World Cup of beer tasting, so I granted him permission to attend. However, I asked him to limit his overall consumption. He stated, “Don’t worry, I promise I won’t drink any more than one glass a day.”
Three days later, I received an email with an attachment from the beer connoisseur. I opened it, and there was a photograph of my patient with his arm around a “glass” of beer that you could easily dunk your entire head and shoulders into. Technically, it was one glass of beer, and he had quite the grin on his face! It was a poignant reminder that we hu
mans can be a devious lot and it is very important to be highly specific with instructions both before and after surgical operations. Now, I very carefully define reasonable activities and food and beverage portions for my patients to adhere to during their recovery period.
My operations are not limited to the liver. I’m trained to treat a variety of cancers in the gastrointestinal organs, anywhere from the stomach to the opposite end of the system, the rectum and anus. One unforgettable patient of mine was a prominent attorney, previously healthy and active, who developed a rectal cancer. The cancer was diagnosed after he kept noticing blood in his bowel movements. His primary internist performed an appropriate digital rectal examination and palpated a tumor. A subsequent colonoscopy confirmed the presence of a nonobstructing, biopsy-proven adenocarcinoma five centimeters above the anus. The patient consulted a surgeon who recommended complete removal of the lower colon, rectum, and anus via an operation called an abdominoperineal resection, or APR. Removal of the rectum necessitates a permanent colostomy on the abdominal wall, something no patient wants. My lawyer patient simply couldn’t fathom the changes this would mean to his active lifestyle. He was in his early fifties and came to me for a second opinion.
We discussed a different approach; a course of intravenous, low-dose chemotherapy combined with radiation therapy every Monday through Friday for five consecutive weeks. After completing the chemoradiation treatment, his tumor was much smaller. With the tumor reduced, I then discussed surgical options with the patient and his wife. I believed there was an 80 percent chance I could perform an operation called a low anterior resection (LAR), in which I would remove most of the rectum, the sigmoid colon, and all of the lymph nodes in the area, but spare the sphincter muscles to allow control over the bowel movements. I would anastomose, or reattach, the left side of the colon to the small remnant of remaining rectum. Finally, because the irradiated rectum was at risk to leak and I wanted to give the anastomosis six to eight weeks to heal well, I would create a temporary ileostomy, a loop of small intestine that would protrude slightly outside the abdominal wall and drain into a bag. On the flip side of the option coin; if I found there was still tumor present in the short stump of rectum, I would remove the entire remaining rectum and my patient would be left with a permanent colostomy. I estimated there was a 20 percent chance this would be necessary.