Patients with advanced cancer die, thinking remorsefully that if they had only held out, a cure for cancer may have appeared. In the face of current evidence, we owe them better
She was 49 years old, a mother of two. Our one and only conversation, on the first day we met, went something like this:
“Doctor, tell me honestly, will I make it to Christmas?”
It was early June. She had presented with spinal cord compression leading to complete paralysis below the waist, her organs and bones overwhelmed by the cancer that had begun in her lung. Now there were signs of a hospital-acquired pneumonia.
Patiently, I explored her request in detail with her husband by her side. I tried to find out what her original oncologist had said before she landed as an inpatient on my unfamiliar unit. Her oncologist was away, she revealed, and anyway, they hadn’t discussed these issues much as she had been so well, virtually cured. The last claim alone should have sounded the alarm for me but I was preoccupied with the task of telling a patient I had never met that she was dying.
Bracing myself I said, “I have never met you before and I confess I don’t know you well but you look seriously ill to me and Christmas is a long way away yet …”
Four amazed eyes stared back at me.
“So you think it could be sooner?”
“I am afraid so.”
A half hour later, the news sinking in, they said, “doctor, we really appreciate your honesty, thank you.”
Outside, I found my intern crying. “Why do we always do this at the last minute?” she asked. “What a horrible introductory conversation to have.”
As if in agreement, the patient subsequently banned me, and my entire medical team, from her bedside, for expressing a view that nobody else had ever done in the 14 months she had harboured the cancer. She relayed through a nurse that her original oncologist had given her an excellent prognosis; the sceptical nurse probed a little and gleaned this, “I always told my oncologist I was going to beat it. Three months ago when I said that a cure was around the corner, he simply nodded.” In other words, the patient was saying that the oncologist’s failure to refute her claim was tantamount to agreement that her metastatic lung cancer was curable. When I eventually spoke to him, the oncologist was incredulous. “She was incurable from the start. There is no way I’d imply differently, you know that.”
I knew that, and I believed him, but the patient never gained respite from her deep disappointment with the medical profession.
“We had no idea her cancer was so bad”, was her husband’s constant refrain, until the morning she died, a mere two weeks after our difficult conversation.
My patient died five years ago. To date, metastatic lung cancer, indeed, like many other cancers diagnosed at a disseminated stage, remains incurable, yet this message has proven as obdurate to convey, as cancer has been to eradicate.
I found myself thinking of this patient and others as I came across an interesting study in Nature Communications. German scientists and their colleagues have discovered that hydra, small polyps that resemble coral, and have been around for hundreds of millions of years, carry genes responsible for cancer. Similar genes have been implicated in human cancers and it now appears that our cells are intrinsically prone to default, setting off on a path of unregulated growth that is cancer. The sobering conclusion, not for the first time, is that cancer has “deep evolutionary roots” that defy a quick, elegant, or universal explanation. Simply put, many cancers, especially those detected at an advanced stage, cannot be eradicated.
Thanks to some ground-breaking insights into the ways our cells falter, modern cancer treatments can treat, shrink and coax cancers into prolonged remission, gratifying for doctors and patients alike. The heartening advances in supportive care means that we can relieve more patients of their oppressive symptoms better than ever – it is hard to imagine the quality of life before the advent of modern drugs for pain or nausea. But the undeniable, and frustrating, truth is apparent to every oncologist that it really does seem impossible to match the wily ways of cancer with our present armamentarium of tricks. This is not failed medicine, but adroit genetics.
Keen observers sometimes ask why patients with other grave diagnoses such as chronic renal failure, severe emphysema, or end-stage heart failure seem at least partially cognisant of their irreversible illness and poor prognosis whilst cancer patients don’t necessarily display the same awareness even when they are visibly deteriorating. The popular assumption follows that oncologists communicate inadequately with their patients, shield them from the truth in the guise of preserving hope, and essentially shoulder the major responsibility for the yawning gap between the doctor and the patient’s understanding of cancer.
But inadequate communication is only one part of the problem. Of what little teaching and mentoring there is in this area, today’s oncologists receive a modest but compulsory share of it in contrast to most other doctors. Oncologists have more opportunities to engage in and reflect on sensitive and difficult conversations. While I readily confess that my own career is replete with well-intentioned exchanges gone astray, it is possible to learn from past mistakes and continually recalibrate. I have also seen this of my colleagues, although I do think that we need to continually work on our human skills.
People form their opinion about cancer long before they become patients. What are the words one commonly associates with cancer? The typical images conjure notions of valour and war, also helplessness, vulnerability and sheer unfairness, all so evocative as to whet our collective appetite for the fight of our lives.
Ever since president Nixon declared war on cancer in 1971, we have spent many billions conducting the ongoing war. A dizzying number of charities have as their mission curing cancer, as if to aim for anything less smacks of insufficient purpose. The recent Australian budget flagged a GP co-payment, a fraction of which will contribute to a medical research fund. Key politicians have avowed the need for such a fund to discover a cure for cancer, something that makes for a far better sound bite than explaining the complexity of our genetic makeup and the artful ways in which cancer genes dodge our efforts at regulating them.
It is no wonder that the average individual believes that it’s merely a matter of time and money before cancer will be history. But to extend the war analogy, prominent scientists are telling us that we may have to be content with memorable victories in some battles without expecting to win the war because, in fact, it is not one war we are fighting against cancer but many different and smart wars that are continuously evolving.
Recent insights into the behaviour of breast, colon and prostate cancers, melanoma and several hematological cancers are fine examples of the power of research to inform genuine advances in treatment.
This doesn’t stop patients posing the poignant question everyday, “but when will they find a cure, doc?” Any number of them bring in carefully preserved tabloid cut outs of the latest breakthrough or miracle, often with the tantalizing postscript that it may or may not reach the market. Patients with advanced cancer die, thinking remorsefully that if they had only held out till the next month or next year, a cure for cancer may have appeared. In the face of current evidence, we owe them better.
A recent editorial in the prominent Journal of Clinical Oncology discusses the “undeniable associations” of lifestyle factors in cancer causation. It states that “as many avoidable malignancies are related to diet as tobacco (30 to 35%), again not accounting for the for the significant addition of obesity (14 to 20%).” Empowering people to mitigate avoidable risk factors is beginning to sound more important than ever, without detracting from the hunt for a cure.
Sometimes, time spent disentangling fact from myth can drain time from more relevant and practical discussions about managing the problems associated with cancer. Confronted with a long list of dispirited patients who regret not being good enough foot soldiers in the war against cancer, I can’t help thinking that the entire public discourse around cancer might do them a collective disservice.
The promise of ongoing cancer research should be hailed without placing a greatly unrealistic expectation on it to find a magic bullet. We need to promote the benefits of a healthy lifestyle as a means of preventing some cancers. And we need to be candid with patients about being partners in something that does not approximate a cure but is no less important in terms of a life well lived. These tasks can’t be exclusive to doctors; they belong to society at large.
When I first became an oncologist, an eminent colleague gave me a copy of Susan Sontag’s Illness as a Metaphor, written when the author was suffering from cancer. The oncologist told me that over the course of my career, I would find one passage particularly meaningful when grappling with the complexities of the job:
Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.
Lately, I have found myself returning to it as I grapple with the task of how to explain to patients that a cure for cancer remains elusive.