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

by Steven A. Curley

  I learned from an unusual and unforgettable personal experience that languages other than English also have recognizable, and potentially inflammatory, regional differences. For more than twenty-five years I have been engaged in research studies in southern Italy. I spend at least one or two weeks a year in Naples at the G. Pascale Istituto Nazionale di Tumori examining the interaction between chronic hepatitis C virus infection and the development of hepatocellular cancer. I have learned to speak Italian well enough to wander the streets of an Italian city or town and get by with anything I need in the way of directions, information, or conversation.

  Unintentionally but not surprisingly, I speak Italian using Neapolitan slang and inflections. Several years ago, I was with two of my friends from Naples walking through the Palazzo di Caserta, the grandiose summer palace of the Bourbon kings of southern Italy and Sicily. It is opulent and remarkable in its architecture, artwork, and furnishings. Interestingly, the palace became a temporary Allied command center during World War II, after American forces occupied the region.

  As my friends and I walked from room to room, we came upon a group of approximately thirty older Italians on a tour of the palace. These were people in their seventies and eighties, slowly shuffling along, some using canes or walkers, and listening to their tour guide. As we approached the group and started to pass them, an elderly Italian woman less than five feet tall spun around and poked me in the chest with her finger. “Sei Italiano?” (Are you Italian?) I replied, “No, io sono Americano” (No, I am an American). She spat on the floor at my feet and said in Italian, “You speak like a Neapolitan pig. Learn proper Italian!” I was incredulous and speechless. My two native Neapolitan friends were not. There ensued a chaotic and loud shouting match between the elderly tourists and my two physician colleagues from Naples. The tour group was from Bologna, and given the long history of enmity between various Italian city-states and regions, the memories run long and deep. The Bolognese were quite vociferous in their dislike of Neapolitans, who were not to be outdone and, despite being outnumbered, responded with a return barrage of obscene gestures and equally loud profanity. I shook my head and informed the entire crowd, in my best proper Italian, I was not involved in their centuries-old dispute. I bypassed the ongoing melee and proceeded onward through the palace. Mama mia!

  In academic medical and surgical practices, our reputation for expertise and excellence in caring for patients with common or rare diseases is based on our reported outcomes and results in peer-reviewed journals. In the mid-1990s, I wrote a paper for a particular journal about surgical treatment of a rare type of cancer, called sarcomas, in the liver. Physicians and patients find papers like this when they are seeking treatment for an unusual malignant condition. My liver-sarcoma paper attracted the attention of a particularly interesting and entertaining couple from New York.

  I returned from the clinic one afternoon, and my secretary handed me a note with the name and phone number of a man from New York City who had inquired about an appointment to see me. She said slyly, “Be prepared for an interesting conversation.” Okay, a little mystery and anticipation.

  I called the number and the patient’s wife answered the phone. When I identified myself she immediately began yelling loudly, directly into the phone and thus, into my left ear, “Honey, Honey, it’s Dr. Curley, get on the extension!” Within seconds, her husband, the potential patient, was on the line. For the next thirty seconds both of them, with thick, easily identified Brooklyn accents, a perfect verbal caricature of movies I had seen, spoke rapidly, loudly, and simultaneously, describing his medical problem. I couldn’t make much sense of anything they said because they were both gradually increasing their voices to a shout to be heard over each other. Suddenly, the man screamed, “Dear, Dear, shut the @%&# up. I am talkin’ to the doctuh!”

  You could have scraped me off the floor with a spatula. I was done. I know it was not appropriate or professional, but I was laughing so hard I couldn’t hide it. The couple on the other end of the line went quiet, and then the man started laughing, too. He apologized and admitted perhaps they were a little loud and excitable. A major understatement! His wife announced she would have more than a word for him once they were off the phone. Ignoring her remark, he promised they would take turns talking, which to their credit, they did for the next minute. Then, like flipping a switch, their conversation deteriorated to their baseline condition of two high volume exchanges going on at the same time.

  After more verbal volley I finally learned that the man had an unusual malignancy called angiosarcoma of the liver. He had been told by several physicians in Queens and Manhattan that this was a poor-prognosis situation and that there was really no good therapy. After finally getting in a few words I asked if he could send his CT scans and biopsy results. The couple eagerly agreed, and I promised to call them back as soon as I reviewed the material.

  These days CT or MRI scans come on a CD-ROM disk, but in the 1990s they were images printed on radiographic film. Back then, large packages with these sheets were routinely delivered to my office. This man’s films and records arrived several days later. When I viewed the scans on a backlit radiographic film panel, I noted that he had a large hypervascular tumor involving the outside portion of the right lobe of his liver. I detected no evidence of any additional tumors in the liver or elsewhere. As promised, I called the patient and his wife, and told them I believed he was a candidate for surgical removal of this disease.

  I can’t describe adequately the shouts of happiness that ensued. After gathering themselves, the couple agreed to an appointment the following week. My New York patient and his wife appeared on schedule and they were everything I had hoped for. They were loud, boisterous, opinionated, and eager to give me a big hug and a kiss on the cheek. I am a tactile person; a hug from a patient or a family member always makes for a good day.

  A surgical oncology fellow and I examined the patient and reviewed his options. We all agreed surgery was indicated. My patient and his wife flew back to New York to arrange for employees to manage their family-owned business in their absence. When he returned to my hospital two weeks later, I removed the malignant tumor in his liver. CT and MRI scans are good, but still not as good as a surgeon’s eyes and hands when he or she explores a patient’s abdominal cavity. The only malignant disease evident on my patient’s CT scans was the solitary liver lesion. However, during surgery I found two subcentimeter tumors in his upper abdomen attached to some fatty tissue. I removed both of these and he recovered from the operation without problems or complaints. The surgical unit staff loved him and his family. Every day when I went to check on him, the nurses regaled me with the latest witnessed indecorous behaviors and sarcastic remarks between my patient and his family. They were, however, invariably gracious and thoughtful to the nurses.

  Fuggedaboutit!

  The pathology evaluation of the liver tumor and the two additional peritoneal lesions showed identical vascular sarcoma cells. I discussed the findings in detail with my patient and his wife, and I presented his case at our multidisciplinary sarcoma tumor board. All of his gross malignant disease had been removed, and there was no standard chemotherapy proven to reduce the risk of recurrence of sarcoma. Therefore, the board recommendation and decision was to follow him every three to four months with follow-up examinations and CT scans.

  Bada bing, bada boom. The patient and his wife, sometimes accompanied by one or more of their grown children, would come for an appointment every three months. The entire clinic team and I always looked forward to their visits because we were guaranteed a vicarious moment of life in New York City with loud and unyielding opinions, arguments, sardonic comments, and a liberal infusion of four-letter words.

  “You talkin’ to me?”

  Every time I saw this man, he would inquire if there was anything he could do for me. He assured me anytime I came to New York, he would be available to provide transportation around the city, restaurant reservations, or any gener
al assistance I might need. He had a genuine, generous, giving soul.

  For almost three years my Brooklyn patient did well, working at his business full-time and enjoying his family and life. He and his wife thanked me effusively at every visit because they had been told by his physicians at home that it was unlikely he would survive more than one or two years. Therapeutic nihilism—our lives are finite, but all patients deserve our best shot at living as long as possible.

  Unfortunately, cancer is cancer, and one month shy of my patient’s three-year surgery anniversary, a single new liver tumor and another tumor in the belly cavity were detected on his CT scan. Once again, we discussed options including chemotherapy or surgical removal. He understood very well the side effects of chemotherapy, having had several family members treated for other malignant diseases, so he opted for a second operation. This was performed and both tumors were removed. Thankfully, the intraoperative ultrasound of his liver showed no additional tumors and I found no other sites of malignant disease in the peritoneal cavity.

  Remarkably, this man’s sarcoma never recurred. He went for another seven years with scans showing no evidence of new sarcoma lesions anywhere in his body. Sarcomas are known to have a high rate of local recurrence (that is, in the area of a prior surgical removal) and metastasis to the liver and lungs. Cytotoxic drugs to treat most sarcomas do not produce great results, so surgical removal of recurrent and metastatic sarcomas provides the best opportunity to control the disease and extend the patient’s lifespan. In academic surgical oncology centers, we commonly recognize that sarcoma patients will educate a decade or more of our trainees about the management of these unusual cancers because many patients will undergo multiple operations to treat their disease.

  Sadly, six months after one of his annual visits, my toast-of-Texas New Yorker’s frightened wife called and told me something was wrong with his liver. She reported he had been feeling weak and tired for about a month, and was experiencing nightly fevers and profuse sweating. His physician in New York had ordered blood work, which showed markedly abnormal liver function. These same studies had been normal when I had seen my patient six months earlier. A CT scan performed in New York revealed odd-appearing nodules in his liver. The next day the couple was on a flight to Texas and I saw him in the clinic. I inspected his blood-test results and the CT images. The new liver abnormalities did not look anything like his previous sarcoma tumors, and there were enlarged lymph nodes around the great vessels in his abdomen. On physical examination, I discovered large, abnormal lymph nodes in his neck and armpit regions.

  I arranged to remove a few of these palpable lymph nodes in the operating room two days later. After examining the nodes the pathologist diagnosed non-Hodgkin’s lymphoma. It was a particularly aggressive subtype. I immediately referred this man to our lymphoma team, and they initiated treatment with aggressive chemotherapy. This worked well for six months and his enlarged lymph nodes and liver abnormalities disappeared. But he paid a heavy price for these results: his skin hung in loose folds from his face and body, he was gaunt and sallow, and his speech and movements were deliberate and pained. But he was defiant, “We fight on, Doctuh, we fight on!” His tenacity was inspiring.

  Unlike his sarcoma, the respite from the lymphoma was short lived. Enlarged lymph nodes reappeared on CT scans, and he developed severe headaches only six months after completing therapy. Further testing confirmed his lymphoma had spread to his central nervous system. The next several months were painful for him, his family, and all of us treating him. He received intrathecal chemotherapy, drugs administered directly into the cerebrospinal fluid flowing around the brain, spinal cord, and into the brain’s ventricles. He had seizures. He was hospitalized numerous times because of severe side effects, immunosuppression, and infections related to the potent, toxic chemotherapy. He suffered headaches that were essentially untreatable by even the most powerful narcotic agents. On one of his admissions to our hospital, I visited him on the lymphoma floor. When I entered his room I found him literally hitting his head against the wall. I grabbed him and pulled him into a chair. Tears in his eyes he explained, “I am trying to knock myself out. I can’t stand the pain.”

  Inconceivable. One of our tasks and goals as physicians is to provide our patients comfort and treatment for their symptoms. Everything the medical and pain-service physicians tried to alleviate his maddening headaches was unsuccessful—unless they administered quantities so high he was essentially anesthetized. The problem with narcotic dosages that high is that people stop breathing; it is how someone dies from an opiate overdose. I have only respect for my colleagues who dedicate their professional careers to assist and treat patients struggling with difficult, occasionally intractable symptoms from chronic disease and associated therapies. They walk a fine line between controlling symptoms, and overdosage.

  My New York kind of guy’s lymphoma was progressing despite treatment, and predictably, and perhaps blessedly, a few weeks later he succumbed to his second malignant disease. Watching almost helplessly as he suffered was impossible and traumatic for his family and physicians. I develop close and lasting relationships with many of my patients, and this man and his family are among the most memorable. He was a large, jocular man who was effusive, demonstrative, profane, insightful, loving, and full of life. His glass was never half full but always overflowing. That overflow was a gift given to everyone he encountered, the overflow brought nothing but smiles, laughter, and joy.

  We should all be so lucky.

  22

  Feeling Lucky?

  “Have patience. All things are difficult before they become easy.”

  Saadi

  Patience: The capacity to accept or tolerate delay, problems, or suffering without becoming annoyed or anxious

  Most people are blindsided when they receive a cancer diagnosis. Folks are going about their business, living their usual lives, dealing with the joys, mundane tasks, and tribulations of modern life when “the big C” strikes. In some individuals, a new lump, bump, pain, cough, change in bowel habits, or other symptom develops unexpectedly and leads them to seek medical attention. Other people are asymptomatic and not diagnosed until they have a routine medical examination or after laboratory, radiographic, or diagnostic studies detect an abnormality. Examples of abnormalities in this latter group include a tumor seen on a chest X-ray or CT scan in a patient who doesn’t smoke and has no cough or breathing difficulties, a suspicious-appearing spiculated, calcified lesion discovered on a routine mammogram in a woman who has no palpable breast tumor, or a colorectal cancer found on a screening colonoscopy in a patient who has no problems with constipation, change in bowel habits, rectal bleeding, or abdominal discomfort.

  When I meet a new patient recently diagnosed with cancer for the first time, it is common for him or her to ask how or why they developed the malignant tumor. Not everyone asks. A person who has smoked two or three packs of cigarettes a day for forty years knows that smoking causes lung cancer. Patients with chronic hepatitis B or C understand that they are at risk of developing cirrhosis and liver cancer. And families or individuals with known mutations in specific genes are aware they have a higher risk of developing breast, ovarian, stomach, colorectal, or other hereditary cancers. For most cancer patients, however, the diagnosis is a nasty surprise. Seeing these shell-shocked patients, I have heard hundreds remark, “I can’t believe my bad luck.” It makes me think of a line from the song “Born under a Bad Sign” performed by the legendary bluesman Albert King: “If it wasn’t for bad luck, you know I wouldn’t have no luck at all.”

  One such unlucky individual was a man who was referred to me. Four years earlier, he had noticed some streaks of bright-red blood in his bowel movements. This had never occurred before so he went to his primary-care physician. A rectal exam showed no evidence of a palpable tumor, but the physician noted the patient had large hemorrhoids. He prescribed treatment for the hemorrhoids, but the patient’s bleeding persisted for another s
everal weeks. Recognizing this was unusual, his primary-care provider arranged for a colonoscopy. It revealed a circumferential, nonobstructing, bleeding tumor of the sigmoid colon. This gentleman was in his early thirties and had no other health problems. He was flabbergasted, as were his physicians. There was no family history of colorectal or other types of cancer, he had no history or endoscopic discovery of a predisposing inflammatory bowel condition or multiple colonic polyps, and he was much younger than most people who develop this cancer.

  The patient was referred to a surgeon, who performed a sigmoid colectomy. The final pathology analysis of the colon and surrounding tissue revealed a tumor that had grown through the wall of the colon and spread to four of the sixteen lymph nodes that were removed. He was therefore categorized as a stage III colon-cancer patient. He received six months of standard chemotherapy, and was then followed every three months by his medical oncologist.

  I entered the picture after this properly methodical and observant oncologist noted the patient’s serum CEA level was elevated on the routine blood tests. A CT scan revealed four tumors in the right lobe of the patient’s liver and one in the left lobe. The radiographic images showed no evidence of tumor at any other location in the body, so we discussed surgical treatment. Most patients are concerned at the prospect of any type of major surgical procedure, but this gentleman seemed particularly anxious. When I inquired about his concern, he reported he was having a run of “really bad luck.” He was afraid he wouldn’t reach the five-year cancer-free mark when he’d never have to worry about cancer again. That’s an unrealistic view of the five-year mark, but I understand.