When I was a medical student, it was recommended we read “On Death and Dying” by Elizabeth Kubler-Ross. This book is considered foundational and established five stages people facing death go through: denial, anger, bargaining, depression, and acceptance. I don’t recall specifically which one of my professors recommended this book, but I did read it and found it useful in understanding how people respond to the grim news they have a disease that may or will lead to their demise.
Dr. Kubler-Ross’s book was instructional, but years of performing major surgical procedures attempting to prevent patients’ deaths from malignant disease have taught me that not everyone goes through all five stages. I have one notable and memorable patient who started in the first stage, and has remained in the second stage (with occasional visits back to the first stage) for over 25 years now. And she hasn’t died despite having stage 4 cancer, so it’s working well for her.
The patient I am thinking of was a lady in her mid-50’s when she was referred to me by a gastroenterologist. She had seen the gastroenterologist because she was having bleeding with bowel movements over a three-month period. The gastroenterologist performed a colonoscopy and visualized and biopsied a tumor in her sigmoid colon. The biopsy demonstrated a malignant colon cancer, so he sent her to me for surgical care. He did not provide any warning about her mindset.
At her initial consultation visit with me, I walked into the room and introduced myself to her and her husband. The look on her face and the energy in the room was pure anger. Her husband sat three or four feet away from her, not making eye contact with her at any time. My first inquiry was to ask how it was she came to be diagnosed with colon cancer.
I was startled by the vehemence of her response. “I DO NOT HAVE CANCER!” Confused, I looked at the sheet of color pictures taken during her colonoscopy demonstrating a tumor in her sigmoid colon. I glanced again at the pathology report indicating a colon adenocarcinoma. I confirmed her name and date of birth was on both of these pieces of information. I looked up and my gaze met hers, and I asked her to explain.
The patient informed me she had no family history of cancer, she lived a healthy lifestyle, she did not smoke cigarettes, she did not drink alcohol, she was not overweight, she exercised regularly, and she had no other medical problems. Therefore, it was impossible for her to have cancer. I was mildly abashed. I had not previously encountered denial of this vigor and intensity. I mentioned that the reports from her referring physician suggested she did have a malignant tumor in her colon. She vigorously shook her head from side to side and said, “No! The doctor is wrong.”
I excused myself from the room and went out to look at the CT images we had obtained. They showed a definite mass in the sigmoid colon, but no evidence of any enlarged or abnormal lymph nodes or metastatic tumors in the liver or lungs. I returned to the room, feeling stymied about how best to approach this patient. At this point, for the first time, her husband looked up at his wife and made a simple statement, “You know dear, you may not believe it, but you do have colon cancer. “
The patient shot him a withering look and he sat frozen in position, with the immediate development of a grey pallor to his skin. I instantly thought of the story from Greek mythology of Medusa; a single look at her face and hair made of wriggling snakes would turn any mortal into stone. The look from the patient was so fierce that I involuntary pushed my wheeled stool two feet back away from her. I glanced over at the patient’s husband, and after seeing he was quietly respiring and occasionally blinking his eyes, I turned back to his furious wife. The conversation that ensued was unique in my experience. She was undeterred in her belief the cancer diagnosis was incorrect. She went on to explain to me over the next twenty minutes that she would prove to me she did not have colon cancer. She stated she had been doing “quite a bit of research” and had found some special high fiber natural diets that would cleanse her system of any malignant cells. I informed her that my recommendation was that she allow me to perform a sigmoid colon resection to remove her biopsy-proven colon cancer. This pronouncement was met with a sneer and a denigrating remark, “You doctors think you know everything and just want to cut people up.”
Okey dokey. I had made a standard of care recommendation for surgical treatment but this lady denied the presence of any malignant disease. She was so certain her physician was incorrect in his diagnosis that she promised to return in three months after eating her special diet to allow me to repeat her endoscopy. I had no choice but to agree. I can recommend a surgical procedure or a multidisciplinary treatment regimen, but I cannot and will not force anyone to comply.
Three months later, as agreed, the patient and her docile husband appeared in my clinic. My nurse instructed her how to administer two enemas to cleanse her lower colon. She completed this task, and I then inserted a flexible sigmoidoscope into her rectum and directed it upstream into her colon. There, 25 cm up into her colon was a slightly larger, but still non-obstructing colonic tumor. I took photographs through the scope and biopsied the tumor. I informed the patient that I still saw the tumor, and even had her and her husband look through the scope. After withdrawing the scope, I temporarily departed and the patient got dressed. I returned to the room to find the patient and her husband, the latter speechless throughout the entire interaction, seated in two chairs. Rather than being contrite, she smugly said, “Let’s just see what those biopsies show, shall we?” I politely agreed and made an arrangement to call her the following week when the biopsy results returned.
The biopsy confirmed colonic adenocarcinoma. I dutifully called the patient and informed her that she had a sigmoid colon cancer, now proven by two sets of biopsies. The phone line was silent for almost ten seconds, and then she cut loose with a string of curses. She explained to me (unnecessarily) that she was very angry and she just did not understand how this was possible. I allowed her to vent for several minutes and once she had calmed down, I asked if she would permit me to schedule an operation to remove her colon cancer. With an exasperated tone, she agreed to allow me to proceed.
The next week I performed a routine sigmoid colectomy that went well. The patient recovered from the operation uneventfully and was discharged on her fifth post-operative day. When she saw me the following week in clinic for her first post-operative visit, I explained the pathology showed a cancer that had invaded into only the superficial muscle layers of the colon and, fortunately, there was no spread of the cancer into any of the nineteen lymph nodes we had removed during the operation. She had what we designate as stage II disease, and at the time there were no clinical studies indicating any clear benefit for giving chemotherapy in this situation. She asked for a copy of her pathology report, which I provided. She read the description line by line, asking frequent questions about specific terminology and meaning. At the end of a ten minute interrogation about the pathology report, she looked at me suspiciously and asked, “So you’re sure this is cancer?”
Yes, I was sure. I informed the patient and her obsequious husband that I recommended a follow up visit in six months with a cancer blood test and a year following surgery we should perform a repeat colonoscopy. She begrudgingly agreed.
At her six-month visit, her blood tests was normal. At her one-year visit, the colon cancer blood test, called a serum CEA, was elevated to almost ten times normal. Her colonoscopy revealed no colon tumors or polyps. I explained to the patient and her husband the abnormal serum tumor marker was worrisome, and after a twenty-minute negotiation, she agreed to a CT scan of the chest, abdomen, and pelvis.
The CT scan was obtained, and a single liver metastasis near the surface of the right lobe of her liver was identified. I walked into the examination room armed with the CT images and showed them to the patient and her husband. Once again an aura of fury permeated the room. The patient repeatedly stated it was not possible for her to have recurrence of her cancer. She reiterated she was doing everything right and could not understand how cancer could have reappeared. At one point she looked at me and declared, “You took all of the cancer out of my colon. It is impossible for it to now be in my liver.”
I calmly explained how a malignant colon tumor can spread to lymph nodes or can invade into microscopic blood vessels in the wall of the colon and release cells that then implant in another organ. I indicated the liver is a common place for colon cancer to spread and eventually grow into a tumor we can detect. I also informed her it was possible to remove this solitary tumor nodule, and then consider a course of chemotherapy in an attempt to eradicate any other microscopic cancer cells possibly present in her body. Finally, I mentioned surgical removal of the liver tumor followed by chemotherapy was not guaranteed to prevent the cancer from recurring in the future.
She sat in her chair fuming. You think he would have learned, but her husband stepped in it again. “Dear, you need to let Dr. Curley take care of this for you.”
Medusa returned. A medical student and a surgical resident had accompanied me into the examination room for my conversation with the patient and her husband. When the patient whirled with a face of rage directed at her husband, a quiet gasp escaped from the medical student standing behind me. I interceded before the patient could say anything and spent the next twenty minutes explaining in detail how the operation could potentially help her control and beat this cancer. I based my opinion on published data and reiterated we could potentially provide an effective treatment by removing this tumor. After continuing to fire occasional sidelong warning glances at her husband, she finally agreed to an operation. When we walked out of the room, the medical student and resident looked at me and the student said, “Wow! That look could have melted metal.”
Yeah, it was that searing.
The diagnosis of recurrent cancer was crimping the patient’s style, so I waited three weeks to perform her liver resection while she took care of other business and matters at home. I was able to perform a segmental liver resection removing only ten percent of her liver. Once again, she recovered uneventfully. The intra-operative ultrasound failed to reveal any additional liver tumors and my survey of the entire abdominal cavity showed no evidence of spread of disease at any other site. I presented the patient’s case at a multidisciplinary tumor board the following week and a plan for six months of adjuvant chemotherapy was recommended. It required over two hours of conversation and question-answering from me and one of my medical oncology colleagues, but the patient grudgingly agreed to receive the treatments. But only after I reconfirmed numerous times the tumor in her liver was actually metastatic malignant colon cancer.
I never witnessed this patient enter the bargaining, depression, or acceptance stages following her diagnosis of her stage 4 cancer. She was rooted in denial and anger. Who knows if this had any impact on her outcome, but I saw her back recently for a 25-year cancer-free follow up visit. The patient and her husband are older and moving much more slowly compared to when I first met them. Before I walked into the exam room, the patient’s husband quietly pulled me aside and informed me his wife had recently been diagnosed with Alzheimer’s disease. He remarked they would not be returning to see me for follow up visits, and he expressed his heartfelt appreciation for my care over the years. When I walked into the examination room and greeted my patient, I was met with the usual steely stare and expression of grim determination I was expecting. When I informed her she had no evidence of recurrent or new cancer, she merely nodded and said, “Of course I don’t have cancer.” I have never seen this patient smile. But I’ve been seeing her for over 25 years. I’m a happy man who likes a good joke and a laugh, but it’s not for everyone. As cancer clinicians, we see patients go through all five stages of emotions after a diagnosis of cancer. It is incumbent on us to recognize the stage, respond to the patients’ and their family’s questions and concerns, and help them move on with their life or prepare for a looming death.
Because we don’t know exactly how much life we have left, we might as well live the hell out of it.