In My Hands: Compelling Stories From a Surgeon and His Patients Fighting Cancer

by Steven A. Curley

  We have had success doing nonsurgical treatments, including transarterial embolization or chemoembolization. For this procedure, a catheter is placed into the femoral artery in the groin and snaked all the way up to the hepatic-artery branches feeding the tumors. A material is injected through the catheter into the tumor blood vessels that blocks, or embolizes, these vessels and starves the tumor of oxygen and nutrients needed to survive. While this can be an effective treatment to kill large areas of liver metastases, the tumors are rarely completely killed by this approach. Chemoembolization includes chemotherapy drugs in the embolic mixture injected into the tumor. Clinical trials have shown embolization alone is as effective as chemoembolization for carcinoid metastases and had fewer side effects. This transarterial treatment can be repeated several times in most patients until they develop problems with the effects of repeated catheter placements in the groin. There are some new drugs that slow down the growth rate of carcinoid metastases, and even radioactive particles that attach to the cancer cells and zap them with a high dose of radiation. Like surgery, none of these treatments totally eliminates all the malignant cells, but they can relieve some symptoms.

  Let’s get back to Mr. Lobster Guy. I wasn’t sure if his bloating and occasional abdominal distention were related to the carcinoid syndrome or to partial blockage of the small intestine by the primary tumor. I recommended surgery to remove the tumor in the small intestine along with all of the adjacent lymph nodes. And because he had four lemon-sized tumors in the right lobe of his liver and one smaller tumor in the left lobe causing his carcinoid syndrome, I also recommended a right hepatectomy and radiofrequency ablation of the left lobe tumor. He agreed and I successfully completed an operation that removed approximately twenty centimeters of his distal small intestine with an anastomosis (hooking the two ends of the bowel back together) and performed the right hepatectomy and radiofrequency ablation of the solitary left lobe lesion. On the surface of his remaining left lobe I could clearly see dozens of additional carcinoid metastases smaller than a grain of rice. I knew I had not removed or destroyed all of the malignant cells but I had resected the vast majority of active cancer cells. After the operation, his flushing and diarrhea completely disappeared.

  After a six-week recovery period and regeneration of his liver, he returned to teaching. I saw him three times a year with repeat blood tests including serum serotonin and chromogranin A levels (another blood test used as a marker for carcinoid and other neuroendocrine tumors). For more than two years he was asymptomatic and pleased with the results. He told me his students were mildly disappointed that he no longer entertained them with spontaneous and unpredictable flushes, but they were happy he was feeling better. Regardless, the nickname stuck.

  I suppose I could have subtitled this story “The Many Returns of Mr. Lobster Guy.” Two and a half years after his initial operation, he called to say that his flushing episodes had returned. He was now having two or three a day and had gone from having one or two bowel movements a day to five or six. A CT scan revealed that he had two three-centimeter tumors in his hypertrophied left liver. When we treated him with long-acting octreotide acetate injections and his symptoms did not resolve, we performed a hepatic-artery embolization treatment on him. This reduced his symptoms for only two months, after which he rapidly developed more frequent and severe diarrhea and episodes of flushing. A repeat CT scan showed that he still had only two tumors in the liver, but they were now almost four centimeters in size with some areas of necrosis (dead tissue) in the center of the tumors, probably related to the embolization treatment.

  Mr. Lobster Guy made it clear he wanted to be done with the carcinoid-tumor symptoms and he requested a surgical approach. It had worked the first time. I operated on him the following week and removed one of the tumors near the surface of the liver and performed a radiofrequency ablation on the other. He had complete resolution of his symptoms within a week of the operation and was content with the choice.

  Patients who have primary or metastatic liver tumors know after talking to me that a healthy liver will regenerate after a portion is removed. Often patients will ask whether it is possible to perform additional operations if new hepatic tumors appear in the regenerated liver. I inform them it is possible in select instances, and I have a few long-term survivors who have undergone two or even three liver operations for malignant disease. I also tell them the story of Mr. Lobster Guy. He is my personal record holder (not expected to appear in the Guinness Book of World Records) for the most operations on one person’s liver. I have operated on his liver seven times. Just before one of my patients was to undergo his second liver operation I told him about Mr. Lobster Guy. My patient replied, “Nothing personal, but that’s one record I don’t want to break, Doc.”

  I provided care for Mr. Lobster Guy for almost fifteen years. Every eighteen months or so, he would develop between two and four enlarging tumors in his liver responsible for recurrent carcinoid syndrome. He steadfastly refused anything other than surgical options. On his sixth liver operation, it took me almost three hours to separate his liver from all the scar tissue in his peritoneal cavity. After a meticulous, tedious dissection to avoid injury to the liver and the organs and diaphragm stuck to it, I completed radiofrequency ablation of three liver tumors. As with all of his previous liver operations, Mr. Lobster Guy’s carcinoid-syndrome symptoms disappeared. Inevitably, two years later he developed two new tumors high in his liver, just under the right diaphragm. I explained to him and his family I believed it would be very difficult to get to these tumors through another abdominal operation given the dense and daunting scar tissue I had encountered during the sixth procedure. I proposed a somewhat unusual transthoracic approach to reach these tumors. He was all-in and ready to proceed.

  I positioned the patient with his left side down on the operating room table, made an incision between the ribs on his right side, and then spread the ribs to expose the right chest cavity. The anesthesiologists deflated the patient’s right lung using a special dual-lumen endotracheal tube, a Y-shaped tube with one arm going into the right and the other into the left main-stem bronchus. This allowed the anesthesiologist to provide anesthesia and oxygen to my patient’s left lung only. I performed an ultrasound through the right diaphragm and “Voilà!”—there were two tumors just under the liver surface. From there it was a straightforward, short operation to remove the tumors and leave a temporary drain tube in his chest to remove any air or fluid. He was hospitalized only three days after lucky operation number seven and was again free from his diarrhea and flushing episodes.

  Mr. Lobster Guy was treated by an admittedly aggressive surgical approach over almost fourteen years. Other therapies didn’t work well for him and he lived most of those fourteen years free from carcinoid-syndrome flushing, diarrhea, or other problems. In the fifteenth year of his disease, I admitted him to the hospital with pain in his pelvis and back and a partial obstruction in his small intestine. Scans revealed tumors disseminated throughout the pelvis and peritoneal cavity. His right kidney was not functioning well because a tumor had encircled and constricted the ureter, the tube that drains urine from the kidney to the bladder. I had a twenty-minute chat with my now seventy-year-old patient and his wife, and I explained this was not a situation I could fix with an operation. He nodded in understanding and said, “We’ve had a good run, but it’s time to stop.” I described other treatment options including chemotherapy. He listened politely, shook his head no and said, “I retired from teaching and I want to travel a bit with my wife and family.”

  For the next six months he did exactly that. I received letters and postcards from him from various destinations in the United States and around the world. The last note I received was from his wife informing me of his death from kidney failure when the cancer obstructed the ureters from both of his kidneys. She reported he had died peacefully without significant pain or discomfort, and most importantly with no recurrent episodes of flushing or diarrhea. H
e had given her a final message to pass on to me. He had always been a direct man of few words who had no problem making decisions to proceed with aggressive surgical treatments for his disease, so his final words were characteristically taciturn, “Thanks, Doc. Your friend, Mr. Lobster Guy.”

  I don’t anticipate any patient of mine will break his record for most liver operations for malignant disease in a single individual. He was a unique, endearing, and unassuming guy. The unusual behavior of his tumors with only a few growing every couple of years is memorable. It was also interesting that medical treatments were not successful in him. One of the things I love most about surgical oncology, and cancer-patient care in general, is that we do not practice from a cookbook. Every individual is different, and the approach and sequence of therapies we use will vary from person to person.

  Mr. Lobster Guy graciously participated in the education of medical students, residents, and fellows over the fourteen years I knew him. Whenever he came to the clinic with recurrence of his carcinoid symptoms, he would greet me with a bear hug. Being an educator himself and ever considerate of the usefulness of a teaching opportunity for my students and surgical trainees, he would say, “Go get ’em, Doc. Let’s show these youngsters some blushing and flushing!”

  13

  What’s the Alternative?

  “As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them.”

  John F. Kennedy

  Gratitude: The quality of being thankful; readiness to show appreciation for and to return kindness

  “Hey, Doc, take a look at this.”

  As I walked into the clinic examination room, the gentleman sitting in the chair stood up, gave me a warm handshake and then embraced me. He stepped back, and took off his baseball cap.

  “Wow, your hair has grown back quickly! It’s all the way down to your collar.” I was impressed because only three months prior he had completed chemotherapy treatments that caused him to lose his hair.

  He explained his rapid hair regrowth had occurred because he was taking a special cocktail of natural herbs daily, which he combined with a “smudge” of sage smoke.

  “Smudging made your hair grow, huh?” I rolled my eyes, and we both laughed. Smudging is the burning of dried herbs and grasses to create smoke which is used to “cleanse or purify” people, ceremonial space, and ritual objects. This sacred practice is performed by many indigenous cultures to cleanse and protect the physical and spiritual body. I had never before heard it credited with hair growth, however.

  I asked him when he thought it would be long enough to braid. This may seem like an unusual question for a male patient, but this man is a Native American who had had a hair braid down to his waist when I first met him three years earlier. He informed me another two months of eating and smudging herbs should be sufficient for his hair to grow long enough to return to his traditional tribal hairstyle. He made sure to tell me, as he does every time he visits me in clinic, he was grateful to be alive and feeling hopeful about his future. His simple thank-you is an example of a great gift I receive from my patients; it is always a blessing.

  This patient first saw me with a diagnosis of a single colorectal-cancer liver metastasis in a difficult location. The tumor was almost three centimeters in diameter and was in the caudate lobe, also known as segment 1, of the liver. This is the portion of the liver immediately in front of, and draining through small vein branches directly into the inferior vena cava. Tumors in this location can be tricky to remove because of their proximity to the vena cava, hepatic veins, and portal vein, but in this gentleman it was possible to safely remove the caudate lobe and rid him of the cancer. He did very well for just over two years after the operation, when he developed three small lung tumors. He then received an intravenous chemotherapy regimen including a drug commonly associated with hair loss. Like many patients, as his hair started falling out, he chose to shave his head. Unlike most patients, he did so in a ceremonial fashion, in a sweat lodge with members of his tribe. He had a remarkable response to the chemotherapy treatments and when I saw him back with his regrown hair, his blood tests and CT scans showed no evidence of residual or new lung, liver, or other malignant tumors.

  After I shared the good test results and we discussed hairstyles, my patient engaged me in a dialogue on alternative therapies, a common topic among cancer patients. I learned early in my career that it is very important to ask patients first for a list of prescription medications they are taking, and then look them in the eye and ask, “Okay, now tell me what else you take.”

  My Native American patient told me that during his chemotherapy treatments he and members of his tribe would hold a sweat-lodge ceremony on a weekly basis. This included burning various types of sage and herbs while in the lodge. He also admitted to eating or drinking several herbal remedies and teas concocted by a tribal medicine man. I had asked him to provide me a list of the substances in these herbal preparations, and he complied with a page and half of various plants, roots, and tree barks that he added to his food or brewed as tea.

  My patient was pleased but not surprised when I told him that there was a long history of identification and development of cancer medication from natural sources. Historically, Native Americans from the Pacific Northwest brewed a tea from the bark of the Pacific yew tree (Taxus brevifolia) and used it to treat a number of maladies, including skin and other types of cancer, arthritis, and even the common cold. In the 1960s, teams from the U.S. Department of Agriculture collected botanical specimens from many species of plants and trees and provided them to the National Cancer Institute. The National Cancer Institute was performing studies looking for any naturally occurring compounds with anticancer activity. The Pacific yew tree proved to be a source of the now widely used drug Paclitaxel. Thus, there was a chemical and pharmaceutical validation that teas made from the bark of the Pacific yew tree actually could have anticancer activity. I mentioned to my patient that finding Paclitaxel in the bark of the slow-growing yew tree had, however, produced a firestorm because conservationists feared overharvesting the tree would lead to its extinction. The original production process required more than twenty-four pounds of bark to manufacture only half a gram of the active chemotherapy drug. Harvesting the yew trees for this purpose would have led to the destruction of old-growth Pacific Northwest forests. Fortunately, the pharmaceutical industry discovered alternative techniques to produce the drug and spared the dwindling population of trees. My patient nodded as I recounted this story. He noted Native Americans respect the land and the world around them, and the destruction of many of our forests, grasslands, and natural resources is a source of great sadness for him.

  Native Americans are not the only group that commonly uses natural remedies. No doubt social anthropologists have found many cultures, historic or current, whose members apply natural substances as poultices or ingest medications to treat illness. The woman who lived next door to one of my aunts when I was a child was a Hispanic curandera. Curanderas and curanderos are healers who recommend, and often mix, a variety of natural animal- and plant-based remedies for just about any type of malady you can imagine. This includes preparations for headaches, sinus problems, influenza, cancer, and even depression when your girlfriend or boyfriend breaks up with you. I learned about this last potion when my then–high school–aged cousin was upset over a romance gone sour. However, he decided not to drink the brew prescribed by his neighborhood curandera and simply got on with his life.

  Probably a good decision.

  I get a variety of responses from patients when I ask them what nonprescription drugs or natural remedies they are taking. Some provide a list readily, while others are evasive, uncertain as to why I am asking the question. I always inform them it is important that I know all agents they take during their cancer care. Interestingly, some compounds may have some beneficial effects, including stimulation of immune function during standard chemotherapy. (Anticancer d
rugs can moderately to severely impair immune-system functions, increasing the risk of serious, even life-threatening, infections.) On the flip side of the coin, some herbal preparations and natural remedies can have an adverse impact and may cause dangerously high blood pressure during chemotherapy treatments or during the anesthesia used for cancer operations. Others act as anticoagulants and cause excessive bleeding, which is highly problematic and undesirable during a surgical procedure. I am not opposed to patients’ using alternative therapies, but I do want to be certain we are safe in our approach to their treatment. I do warn patients to be wary of spectacular claims of unsubstantiated cancer cures from rogues, charlatans, and predatory miscreants. People facing a frightening and potentially lethal cancer diagnosis can fall prey to unscrupulous quacks. When patients ask my opinion about using alternative therapies, whether it is a specific substance or just their use in general, I utter a common truism: if it sounds too good to be true, it probably is.

  In the cancer-treatment community, we really don’t know how many patients add so-called complementary and alternative therapies into their prescribed treatment programs. Though the question has been asked and studied, the results vary depending on the definition of alternative medications and the veracity of patients who may not be willing to admit they are taking nontraditional substances or treatments. I frequently receive email queries or am asked by patients, family members, and friends about agents or equipment someone recommended or they found during an internet search regarding better or less toxic treatments for cancer. I do not discourage this practice and I actually provide patients with a list of resources including reputable academic institutions and individuals who are performing active research on alternative therapies and drugs. Thankfully, the National Cancer Institute and other research bodies have recognized that naturally occurring substances can have biologic and medical activity.