Eyes downcast, kicking the grass with his soccer cleats, the player would quietly mumble an agreement that it was not fair. The chagrined and chastened player would wander off to join his teammates who would cheer him up, “Don’t ever say that to Coach. He knows life is not fair, taking care of cancer patients.”
The dust would settle, I’d give the player a pat on the back and a smile, and I would gather my team. We would have a rousing talk about tactics and some fun ideas for the second half of the game. It was a great time. My teams were always in terrific shape, and it kept me in good condition running and practicing with them. The kids played hard, clean, fair soccer, and I expected great sportsmanship from them. We won a lot more games than we lost. Those years coaching youth soccer allowed me to maintain a semblance of sanity when insanity swirled in the world around me.
I never displayed diplomas or professional awards on my office wall. Instead, every year I hung a framed poster of my team. Kids don’t prefer to stand in straight lines, hands clasped behind their backs as in official team photographs. So instead, we posed wearing uniforms and sunglasses, while copping an attitude with a Harley-Davidson motorcycle or two in the background. Have some fun with it!
My football teams learned a lot of important life lessons and new vocabulary words (a daily ritual), and they realized soccer was a fun game. Win or lose, what counts is your character and how you conduct yourself through life. I learned from them, too. When my players graduated from high school, they and their parents showed up at my door one summer afternoon and presented me with a soccer ball signed by the entire team. They thanked me for teaching them perspective and an understanding of what really matters in life. For a rare moment, I was speechless. This is the only trophy or award of the dozens my soccer teams have won that I have ever displayed. Every time I look at that ball I am reminded what really matters.
Taking care of cancer patients is a daily reminder that life is not fair. Children are diagnosed with cancer. That’s one the furthest things from fair I can imagine. Some patients diagnosed with malignant cancer have no identifiable risk factors. They don’t have a genetic predisposition or family history of cancer, they exercise regularly, they do not smoke cigarettes, and they eat a healthy diet. Nonetheless, they develop some type of malignant disease. At some point during our conversations these patients understandably ask, “Why did this happen to me?”
I don’t have an answer. Sure, medical genetics has advanced in its ability to perform somatic- and tumor-mutational analysis, which may detect key driver mutations leading to cancer. However, in most patients we don’t know why DNA alterations arise. About eight years ago a woman in her early forties was referred to me with colorectal-cancer liver metastases. If you read the oncology textbooks, you learn colorectal cancer is diagnosed most commonly in the sixth and seventh decades of life. Thus, the current standard recommendation is to start screening with colonoscopy examinations at age fifty. This woman had no family history of colorectal cancer, or any other type of cancer for that matter. She developed rectal bleeding with bowel movements that persisted for more than a month, so she saw her primary-care physician. Subsequently, a gastroenterologist performed a colonoscopy and confirmed the presence of a circumferential colonic adenocarcinoma in the sigmoid colon, the last portion of the colon attaching to the rectum.
A complete evaluation including CT scans and blood tests revealed no other obvious site of cancer, so she underwent a routine sigmoid colectomy. Pathological evaluation of the specimen showed a cancer that had grown through the wall of the colon and had spread to three lymph nodes near the primary tumor. Colon cancer metastasizing to regional lymph nodes is classified as stage III. Several prospective, randomized clinical trials have indicated that six months of chemotherapy reduces a patient’s risk of developing recurrent disease. While it lessens the risk however, cytotoxic systemic chemotherapy does not eliminate the chance that cancer will return. There are no guarantees. Instead, we play the odds to improve the likelihood of long-term overall and disease-free survival. After recuperating from her operation, this lady completed six months of intravenous chemotherapy, which caused significant side effects and made her lose time from work.
After recovering adequately from the toxic effects of chemotherapy, the patient resumed her normal life, and her medical oncologist saw her back in his office every three months. Nine months after finishing chemotherapy, a blood test indicated a possible recurrence of cancer, and a CT scan confirmed the presence of two tumor masses in the right lobe of her liver. At that point she was referred to me. At the same time, the patient’s husband decided he could not deal with the stress of caring for a wife diagnosed with stage IV colorectal cancer, so he left her. That’s not fair. I was presented with a patient bereft of comfort, frightened, and confused. After confirming with imaging studies that there was no evident metastatic disease at sites other than the right lobe of the patient’s liver, I performed an operation that removed the tumor-bearing area.
One of the items I always discuss with patients before surgery is recurrence of cancer. This is a shadowy possibility we must consider and reveal. All patients go into a cancer operation hoping their tumor or tumors will be removed completely. Spoken or not, their wish is for a cure and the potential that their cancer will be nothing more than an unpleasant memory. But we surgeons know all too well that cancer may recur despite a sound, well-performed oncological operation and additional treatments with chemotherapy, radiation therapy, or other multidisciplinary approaches. Cancer is a consummate model of evolution. Malignant cells can adapt and mutate. Subpopulations of cancer cells with an advantageous phenotype can survive the hostile conditions instigated by toxic drugs, ionizing radiation, and other targeted therapies. These cells cannot only survive but thrive, grow, metastasize further, and wreak havoc in our patients.
After recovering from the operation, my patient and I discussed whether additional chemotherapy would be helpful. Unlike the results with node-positive stage III colorectal cancer, there is no definitive proof (meaning prospective, randomized large-scale clinical trials producing level 1 evidence) that additional chemotherapy after resection of stage IV colorectal-cancer metastases reduces the risk of recurrence. Nonetheless, this young woman was very concerned, and after weighing her options, she decided to undergo another six months of chemotherapy with a different regimen from the previous one.
This second combination of cytotoxic drugs hit her harder than the first round of chemotherapy she had received. She was hospitalized twice because of severe dehydration and infection related to immune suppression caused by the chemotherapy. She lost her hair, she missed significant periods of work, and her employer laid her off from her job. That’s not fair. After completing her second six-month course of chemotherapy, we resumed the process of following her to watch for any recurrence of cancer. One year after completing chemotherapy, a CT scan revealed a new tumor in the left lobe of her liver. In this woman’s case, subclinical nests of cancer cells were present in the liver when I performed her operation. We oncologists hope that chemotherapy will eradicate these microscopic areas of cancer, but the toxic drugs are not perfect and cancer can recur despite treatment. In fact, the drugs may actually lead to malignant cells that are more resistant to chemotherapy. That’s not fair.
As my patient had already undergone two major abdominal operations and a year of chemotherapy, I discussed treatment options with her. I told her the single tumor could be surgically removed, and I believed this was her best choice. She considered it for about a week and then agreed to proceed. The third operation was difficult due to scar tissue throughout her belly cavity, but it was possible to perform a wedge resection of the single liver tumor. During the ultrasound examination, I found a second small tumor deep in the left lobe of her liver, which I destroyed with a radiofrequency needle. Once again, by the best tests and procedures available, she was rendered grossly disease-free. But because her cancer had recurred despite two different chemotherapy recipes, we
agreed it was preferable to follow her closely and hold off on any chemotherapy or other treatments.
One year ago my patient passed the mythical five-year mark with no evidence of recurrent or metastatic colorectal cancer. She was elated. She had moved to a new city and had moved on with her life. Losing her job caused her to reevaluate her career options and she had found new, exciting, and rewarding employment opportunities. She enjoyed her work, co-workers, and friends and had time to spend with her family, including a new grandchild.
Life isn’t fair. Six months ago I received a call from this sobbing patient. She informed me she had just been diagnosed with inflammatory breast cancer. She had noticed that her left breast seemed swollen and then rapidly it became hard and had areas of redness across the skin. She made an appointment with a medical oncologist in her new hometown and, upon examining her he immediately recognized the signs of an aggressive breast cancer. Radiographic studies and biopsies confirmed a second type of malignancy, unrelated to her previous colorectal cancer. The complete clinical staging evaluation revealed enlarged lymph nodes under her left arm, and a fine needle aspiration biopsy confirmed the presence of metastatic breast-cancer cells.
Inflammatory breast cancer is a particularly aggressive form of cancer, and her medical oncologist initiated a round of chemotherapy for this new problem. She recently passed, but did not celebrate, her fiftieth birthday. Understandably, she was not in a celebratory mood. None of this is fair. But it is the reality cancer patients face. The fear, the uncertainty, the painful and toxic treatments, the disruption of normal patterns of life, and the effects on family members and personal relationships are all too real.
I am not an expert on breast cancer, but I saw my patient back in my office a few weeks ago. It was a visit she requested more for reassurance than for recommendations about her current care. We talked for more than thirty minutes and at the end of the conversation, I confirmed I would continue to follow her closely and provide any treatment I could to help her. She shook her head and said sadly, “I don’t understand why this is happening to me. It’s not fair.”
She did not get The Lecture. I gave her a hug and I agreed with her, saying, “You’re right, it’s not fair.”
A few years ago a thirty-eight-year-old mother of four was referred to me to treat colorectal-cancer liver metastases. Four months previously she had presented with onset of severe abdominal pain and worsening constipation. Her physician ordered a colonoscopy that identified a nearly obstructing lower colonic tumor. An urgent operation was performed to remove the section of tumor-bearing colon along with the adjacent lymph nodes. The surgeon successfully connected the two ends of the colon together; happily, the patient did not require a colostomy. The surgeon palpated and then biopsied tumors near the surface of the liver, and the pathology evaluation confirmed a poorly differentiated, or aggressive-appearing, adenocarcinoma of the sigmoid colon with microscopic invasion by cancer cells into blood and lymphatic vessels. Several lymph nodes contained metastatic colon cancer, and the biopsied liver tumors proved to be metastatic colorectal cancer. She had just recovered from the colon operation and three months of intravenous chemotherapy when we met.
She seemed in excellent health, lean, robust-appearing, taking no medications, busy raising four small children, and she and her husband were avid cyclists. From a physical and medical point of view, she was a great candidate for surgery. Repeat imaging of her abdomen after six cycles of chemotherapy showed that of the five tumors in her right liver lobe, two had disappeared, and the remaining three metastases along with a solitary left-lobe tumor were greatly reduced in size. As usual, I discussed the indications, alternatives, risks, and potential outcomes associated with a major liver operation with the patient and her husband. After I finished she asked, “I know the cancer may come back, but it’s not common is it? That wouldn’t be fair.” Ouch, the fairness thing again. We had a fifteen-minute discussion about the probabilities of cancer recurrence, and I told her the chemotherapy had produced significant shrinkage of her liver tumors, but I could not predict the future and could not assure her the cancer would not come back. She stated optimistically, “Well I’ve had all kinds of scans, CT, MRI, and PET, and the only thing that shows up is these tumors in the liver, so I think I will be fine.” Combined wishful and hopeful thinking. I get it, but I reiterated several times that the cancer could return at any time despite aggressive surgical and medical treatment.
We proceeded and I completed an uneventful extended right hepatectomy eliminating all tumors in her liver except one small lesion remaining near the edge of the left liver lobe, which I removed with a wedge resection. All detectable malignant tumors were taken out with good, tumor-free surgical margins, and intraoperative ultrasound did not detect any additional liver cancers. The patient, her family, and I were all happy. A successful operation. While in the hospital she had the usual expected profound fatigue for the first few days of liver regeneration, but bounced back rapidly and was discharged on postoperative day five. I saw her in the office a week later, and she looked like she had just been out for a stroll. Her cheeks were pink and rosy, she had a big smile on her face, and she exuded hope and confidence. Her blood tests were normal, and I arranged for her to return to see both her medical oncologist and me six weeks later to discuss additional chemotherapy. The final pathology report on her liver showed only scar tissue where the two right liver tumors had vanished on her CT scans, and the remaining four tumors contained mostly scar tissue and inflammatory cells with a few isolated islands of cancer cells. Her medical oncologist was very pleased with the dramatic response to chemotherapy.
One week before her scheduled visit, however, she called me and reported that during the previous forty-eight hours she had been developing increasingly severe pelvic pain. I instructed her to come to the emergency room immediately, and she and her husband were there within thirty minutes. She was clearly in severe discomfort. We gave her a dosage of intravenous pain medication and admitted her to the hospital. An MRI scan of her abdomen and pelvis was performed later that day.
When I met with her medical oncologist, we pulled up the images on the computer. We sat staring at the screen, astonished. The left lobe of her liver had regenerated beautifully, and the wedge defect where I had removed the left-sided tumor was readily evident. Also readily evident, however, were more than a dozen approximately one-centimeter-diameter, new liver metastases. The MRI scan of her pelvis revealed a previously undetected tumor invading the sacrum, eroding into the bone and pressing on the end of her spinal cord. Fast-growing early recurrences like these are not a frequent event, but when they happen it launches the entire medical team into a series of questions regarding what, if anything, we could have done differently to detect or prevent this situation. Often we have no discernible answers. It is a huge disappointment to patients, family, friends, and the treating physicians.
The medical oncologist and I entered her hospital room and had a long, emotionally painful conversation with the patient and her husband. We explained the findings and the need to engage our neurosurgical colleagues to first deal with the tumor in her sacrum, and then to initiate chemotherapy as quickly as possible. At one point, this woman looked up from her hospital bed at me and said, “You said cancer is not fair. You were right.”
I wish I hadn’t been.
One of our neurosurgical colleagues performed an operation the next day to remove the tumor invading the bone and compressing her spinal cord. While she had new surgical-incision pain to deal with, the severe pelvic pain had been treated effectively. After recovering from this surgery, she resumed chemotherapy.
She is still alive, but she has been on chemotherapy almost continuously for more than two years because her cancer stubbornly refuses to disappear and continues to pop up at new sites.
Cancer is not fair. Cancer does not care about fairness. But all of our patients deserve a fair shot at beating this dreaded disease. That’s the promise. That’s The
Lecture I give them.
21
New York State of Mind
“Gentleness, self-sacrifice, and generosity are the exclusive possession of no one race or religion.”
Mahatma Gandhi
Generosity: The quality of being kind and generous, sharing
Upon meeting new people and speaking with them for a while, it is not unusual for them to ask me, “Where are you from?” I know it may be impolite, but I answer their question with a question, “Why do you ask?” Invariably they respond, “You don’t have an accent.” I inform just-met folks that I was raised in New Mexico. This occasionally leads to a confused or startled expression depending on the individual’s knowledge of geography. To erase uncertainty, I explain that New Mexico is actually one of the fifty states in the United States, not the country Mexico. Apparently my upbringing left me accentless but possibly, in the minds of some people, a foreign national.
All languages have regional slang, inflections, and dialects. I have lived in Texas long enough to easily distinguish an east Texas drawl from a west Texas twang. Growing up, my impression and understanding of different American English accents came from television and movies. I was familiar with New Mexico Latino “Spanglish” and American Indian inflections, but prior to attending medical school I had not encountered people from the deep South or the Northeast, including places like Boston and New York.
Recognizing the location of an individual’s upbringing by his or her accent is not a phenomenon unique to America. Scottish English is drastically different from American idiomatic English—and frequently incomprehensible to Americans. Even within a relatively small country like Scotland there are identifiable regional intonations. The whole of England is a fraction of the size of the great state of Texas, yet there are more than a dozen geographically based variations in pronunciation in England, from the Midlands, northeast, northwest, east Anglia, Yorkshire, southwest, and southeast. London may be considered separately with accents ranging from well-heeled aristocrats to proper BBC broadcasters to the cockney tones of the working class. Jolly good.
In My Hands: Compelling Stories From a Surgeon and His Patients Fighting Cancer Page 15