Sometime ago the first patient of the day pulled up a chair and declared, “well, you are the final stop, doctor. No one else can find what’s wrong with me.”
Since he threw down the gauntlet like that, we regarded each other with some curiosity. To me, he looked well but then, many cancer patients do while harbouring insidious disease. He, meanwhile, had also sized me up. Eyeing the pile of chemotherapy orders on my desk, he says, “but I will tell you this much, I don’t have cancer.”
His resolute demeanour rather than the more typical trepidation caught my attention enough to enquire ”how do you know you don’t have cancer?”
“I just do.”
The 78 year-old retired teacher had a distant history of an early prostate cancer, successfully removed 11 years ago. He had been reasonably well until developing diarrhoea six months ago, initially managed by his family doctor. But when the symptom seemed to worsen he was sent to a surgeon and a gastroenterologist, who between them ordered a bewildering array of tests without each other’s knowledge. Leafing through the mound of paperwork now forwarded to me I counted the tests under my breath. Two CT scans and two ultrasound scans, a gastroscopy and colonoscopy, two 24-hour stool and urine collections, and nearly 50 blood tests, from the pedestrian to the quirky, many duplicated; the diagnoses entertained ranged from HIV to irritable bowel but the patient seemed none the wiser and certainly no better.
Finally, with no leads left, he was sent to oncology with the suggestion to obtain a PET scan, which has a higher resolution for detecting silent cancer although it seemed a long arc to draw between distant cancer and present diarrhoea.
So far, the patient was correct. There really was no evidence of cancer and reviewing the results, I did not think that another scan would change that. With literally no investigation left wanting, I went back to the time-tested rule of obtaining a history. That, and the fact that I couldn’t send him out after less than 10 minutes telling him he was the most thoroughly investigated patient I had ever met and he didn’t really need to see me.
No, he didn’t smoke or drink alcohol. He had begun experiencing episodic chest pain on exertion and lately, he had been dragging his knee due to arthritis but when he had mentioned these things to the doctors they had all advised him to sort out the diarrhoea first. “Once people think you have cancer no one wants to know about your other problems.”
“Tell me about your diet”, I mused.
“I eat really well”, he answered, somewhat defensively.
“I don’t doubt it but tell me what you eat.”
“I have a watermelon every morning and then…”
I am certain that I would have missed this vital clue had I not been paying full attention to his words, admittedly as there was little else to distract me.
“Did you say a watermelon?”
“Yes, I eat a fresh watermelon every morning. Then I try to get through some other fruits.”
“But that’s a lot of watermelon”, I exclaimed.
“Tell me about it. It takes ages to get through!”
“But why do you each so much watermelon?”
It was his turn to look at me quizzically. “Because fruit is healthy for you.”
After that, it didn’t long to establish that his diarrhoea was caused by fructose malabsorption from consuming an extraordinary amount of watermelon in addition to other fruit. When I told him my hunch his face lightened with relief and gladness. He stopped his watermelon habit and the diarrhoea disappeared. On his final visit, he rued, “I wish someone had figured this out earlier to save the hassle and the cost of the last six months, but they all wanted to find the cancer.”
I thought of that patient recently when I read a provocative essay in the Health Affairs blog. The authors, an oncologist and a researcher, state that the National Cancer Institute was allocated nearly 5bn dollars in 2014 to fight the disease that Americans feared most. The last few years have seen conventional treatment options replaced by very expensive, and with notable exceptions, marginally beneficial drugs and interventions that can nonetheless cause significant toxicity, pain and suffering to the patient.
Whilst waging the “war” against cancer, we have lost sight of the broader view of health, which includes such things as quality of life, the sociological and psychological context of disease, and the interplay of other important illnesses with cancer.
Using findings from a revealing new study, The National Social Life, Health and Aging Project (NSHAP), the authors describe how the emphasis on a disease rather than the whole patient is misplaced. Modern technology has made a cancer diagnosis more commonplace. Successful treatment of early cancers is creating a generation of survivors whose remaining lives are branded by the physical consequences and emotional fallout from a cancer diagnosis. And in the case of breast and prostate cancer, two of the commonest, there is growing debate about the wisdom of aggressively diagnosing and treating variants of the disease that many patients die with, not of.
Hapless patients discover that their more pressing concerns are casually relegated to the bottom of the healthcare hierarchy. An elderly man is told that the dizziness that prevents him from walking safely is not as important as his cancer although he says he wouldn’t even know that he had cancer. A woman observes that every health complaint is regarded through the prism of her cancer history even though the low-grade cancer was incidentally discovered and never considered a threat. “I am more than the sum of my cancer history”, she protests.
With all the attention focused on cancer and its manifold complications, patients are exasperated by the inattention to their other health problems, often more concerning and relevant to quality of life. The NSHAP compellingly found that even in cancer survivors, a fracture after age 45, disordered sleep, diabetes and frailty were much more important predictors of health status than their cancer. Lack of exercise, poor mobility and mental illness confidently herald overall health decline yet they are largely ignored by prevailing models of research and clinical care. Funding to combat cancer is never far from the news and no amount ever seems sufficient. With this in mind, the authors suggest a rather elegant but startling solution to the cancer “crisis”: stop paying so much attention to it.
There is a visceral fear associated with the very name of cancer but not all cancers are the same and should not be treated thus. While aggressive cancers merit aggressive management, other patients benefit far more from a holistic consideration of their health needs. The authors suggest we reconceptualise healthcare to consider a more appropriate paradigm that swings away from the diagnosis in favour of the whole person. This means genuinely exploring individual healthcare needs, goals of care, and patient preferences, not only espousing them on paper as we have long tended to do. Then we may have greater hope of moving towards the sensible World Health Organisation (WHO) definition of health as being not merely the absence of illness but the presence of a life imbued with quality.
As a practicing oncologist in a country with an aging population, I have never been more convinced of the practical value of this vision to patients.
I recently met a wonderful patient in his 80s, flanked by his two sons. He clutched my hand and pleaded with me to stop the incessant march of doctors and interventions to pin down suspected cancer in the twilight of his life. What dismayed me most was the fear in his eyes of being a victim of the excesses of medicine. “I dread that no one will listen to me, yet there will be no winners.”
Relief flooded his face when I pledged to honour his wishes. For him, and others like him, the real crisis in cancer involves the failure to regard the diagnosis in the context of a larger life. There is no better time for change.
Dr Colin Holloway 