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The repercussions of delays in diagnosing cancer, either through screening or the presence of early symptoms, and of required modifications in standard-of-care management paradigms in the COVID-19 era are only now beginning to be fully appreciated.
Maurie Markman, MD
The era of coronavirus disease 2019 has transformed health care in the United States and worldwide, including in the oncology arena. Concerns about the risks associated with spending time in a medical facility for a consultation, test, or procedure have had a substantially negative impact on visits for these services, including well-established cancer screening strategies. The repercussions of delays in diagnosing cancer, either through screening or the presence of early symptoms, and of required modifications in standard-of-care management paradigms are only now beginning to be fully appreciated.
It is not difficult, however, to understand the anxiety that a patient with cancer experiences upon being informed that their treatment will have to be delayed or changed because of the pandemic, as their trusted oncologist struggles to explain the rationale for new therapeutic recommendations and at the same time provide reassurance that the ultimate outcome will not be seriously jeopardized.
This stress will be added to the potentially serious psychological effects associated with a patient being informed that the diagnosis is cancer. Although overall outcomes for cancer treatment have unquestionably improved rather dramatically over the past several decades, the unnerving and frightening words of Susan Sontag in her landmark work “Illness as Metaphor” remain for many patients (and in a number of clinical settings) as relevant today as when they were written more than 40 years ago: “Someone who has had a coronary is at least as likely to die of another one within a few years as someone with cancer is likely to die soon from cancer. But no one thinks of concealing the truth from a cardiac patient: there is nothing shameful about a heart attack. Cancer patients are lied to, not just because the disease is (or is thought to be) a death sentence but because it is felt to be obscene—in the original meaning of that word: ill-omened, abominable, disgusting, offensive to the senses.”1
Much has been written over the past several decades about various approaches that patients, with the assistance of their families, can employ to cope successfully with their cancer journey. One approach that I’ve observed during my 40 years as an oncologist is for the individual to be realistic but remain truly optimistic about the future, regardless of published survival statistics or the often inaccurate focus by many, including the media, on the median in survival curves as the anticipated outcome for an individual patient.
We see reports in high-impact journals where patients with objectively incurable cancers are described as frequently saying that “cure” is their goal, with commentary suggesting that these individuals have either received completely inaccurate data from their oncologists or that they border on the delusional in their beliefs despite being provided with accurate information.2 We even see reports where self-declared experts claim that many patients who are offered entry into early-phase cancer clinical trials suffer from a form of psychological derangement (or, again, have been given inaccurate information) because they quite mistakenly believe they will benefit substantially from study participation; the phenomenon is called therapeutic misconception.3
Much can be said to refute the contention that the current generation of molecularly based early-stage cancer clinical trials lack therapeutic potential, but it is important to note that investigators are likely to miss a fundamental message in patients’ responses to surveys about participation in such studies. Although there will certainly be patients with advanced cancers who fail (or refuse) to understand the facts related to their disease, it is also very possible these individuals fully appreciate their status but still maintain a fervent hope for a favorable outcome, electing to be optimistic rather than pessimistic about their future.
And what is wrong with this? In fact, existing literature has revealed survival benefits associated with an optimistic perspective following the diagnosis of cancer in certain clinical settings.4 Further, there is evidence that when there is alignment between the treatment goals of patients and their oncologists, substantially less psychological distress is likely to occur.5
How patients with cancer perceive the potential clinical usefulness of their treatment may also influence specific therapeutic outcomes, as has been shown in studies examining both the placebo (“positive”) and nocebo (“negative”) effects associated with various medications.6
In summary, it is critical that the oncology community continue to examine the psychological impact of a diagnosis of cancer and its treatment, and learn to optimize approaches that may favorably influence the individual’s cancer journey, including issues of quality of life, emotional well-being, and survival.