Outdated Terminology in Oncology: Is It Finally Time to Reassess?

Maurie Markman, MD

It is appreciated that all areas of medicine employ a set of standard terminologies designed to serve as critical components of an effective communication strategy. For example, there is a template for documenting a medical history, physical findings, laboratory evaluations, and conclusions based on those observations as well as formats for follow-up of abnormalities. Specific specialties will modify and expand sections based on unique aspects of the care provided.

In the past this language was principally shared by members of the medical and scientific establishment or more exclusive specialty communities, but in recent years the public and individual patients have become increasingly involved in discussions related to the interpretation of terms employed in the clinical practice of medicine. For example, it is increasingly routine for patients to have almost immediate access through a private electronic portal to all data within their medical records, even at times before their own physicians have had the opportunity to review a new report.

Although it is perhaps reasonable to suggest that most of the terminologies employed by the clinical community, whether long-standing or relatively recently introduced, are as general concepts not overly difficult for the non-expert to understand, the absence of clearly articulated definitions as well as the lack of transparency related to how outcomes are interpreted and utilized within a particular category may raise legitimate concerns.

The concept of “quality of life” routinely discussed within the oncology arena serves as a good illustration of the issue being highlighted here. Surely there will be little if any debate among treating physicians, patients, their families, payers, or regulators regarding the relevance of the quality of life being experienced by a patient with cancer. A specific anxiety will be the potential impact of a proposed therapeutic on this critical factor for both the overall population who might be considered to receive such therapy as well as any individual patient.

However, this universal agreement may dissipate or even completely disappear when one begins to inquire about the details of the concept of quality of life. For example, who decides if a measured “negative” impact of a given therapeutic (eg, short- or longer-term fatigue or interference with activities of daily living) in a clinical trial is greater that the potential “positive” effects (eg, prolong time to symptomatic or measurable disease progression) such that regulatory approval for noninvestigative use will be denied or that third-party payment (eg, private or government insurer) will not be provided?

Stated more directly: What role should individual patients play in the interpretation of quality-of-life data as relates to their own care vs that of study investigators in reviewing quality-of-life data obtained in a clinical trial or (as noted above) regulators or payers?

A second, and in the opinion of this commentator, more problematic expression that continues to permeate the medical literature is that of “complementary and alternative medicine” (CAM). Space does not permit a detailed critique of the unfortunate continued misleading representation by some of the widespread use by patients with cancer of a large variety of strategies designed to favorably impact their quality of life following the diagnosis of cancer. Such approaches include spiritual endeavors, behavioral modifications, physical maneuvers (eg, acupuncture) and herbal medications, among many other tactics.¹

The field of integrative medicine is increasingly characterized by the conduct of clinical trials, including well-designed phase 3 randomized studies, from recognized academic institutions and published in highly regarded peer-reviewed medical journals.^2,3 Yet despite published data refuting such conclusions,⁴ we continue to see publications that somehow feel justified to lump together complementary/integrative care efforts with so-called alternative (or refusal of conventional care) approaches suggesting that the compilation of strategies negatively impacts clinical outcomes (including survival).^5,6

Is it not time to simply eliminate the term CAM from our clinical vocabulary, since there is absolutely nothing inherently “alternative” about ongoing approaches within the sphere of integrative oncology designed to improve the quality of life for patients during their cancer journey? Continuing to employ this completely outdated term is potentially terribly misleading if not actually harmful.

The final category of terminology requiring extensive thought and reorganization is the concept of cancer staging.⁷ To be clear, there should be no debate regarding the clinical utility of this fundamental process.

However, the management of solid tumors has evolved substantially over the past several decades from a rather straightforward approach (eg, surgery followed by local radiation, or possibly 1 course of moderately/minimally helpful systemic antineoplastic therapy in the presence of disease recurrence or metastatic disease at diagnosis) to the delivery of an intricate and wide array of beneficial therapeutics. This major change in management has resulted in an increasing number of cancers being appropriately considered as “chronic illnesses.”⁸

Simply stated, the current universally employed cancer staging system does not adequately capture the complexity of frequently multiyear management of many cancers. For example, what does it mean and what are the therapeutic and future survival implications associated with stating a patient is about to receive “first-line,” “second-line,” or “third-line” treatment of metastatic or recurrent disease, or is embarking on “maintenance therapy”? How does the oncology community evaluate the impact of intermittent systemic vs prolonged daily oral therapy on clinical outcomes (survival and quality of life)?

The current cancer staging system and standards for suggested or mandated data collection to help inform the future development of optimal approaches to disease management are (to be brutally blunt) woefully inadequate.

And as a last point to emphasize the constraints of the current approach to cancer staging, one must acknowledge the limitations of survival data related to stage. Again, at a time when the treatment of solid tumors was relatively simple, defining the opportunity for survival based on stage at diagnosis was objectively meaningful. But what is the anticipated survival of a population of individuals whose disease progresses at some point after initial treatment but who respond impressively well to a second-line approach vs individuals who achieve only a more minor (or no) response?

Or consider this question: If a newly diagnosed patient with a metastatic cancer projected to have a population-based 10% chance of 5-year survival remains disease-free after 3 years of observation (with or without ongoing treatment) and asks her/his physician what is the likelihood he/she will experience an additional 5 years of survival (conditional survival analysis), how should the physician respond?⁹ And this is a highly meaningful inquiry to which we should be able to provide an answer.

Is it time for the oncology community to begin to address these issues?

Maurie Markman, MD, is president of Medicine & Science at Cancer Treatment Centers of America, a part of City of Hope.

References

1. Cassileth BR, Deng G. Complementary and alternative therapies for cancer. Oncologist. 2004; 9(1):80- 89. doi:10.1634/theoncologist.9-1-80
2. Yang Y, Li X, Chen G, et al. Traditional Chinese medicine compound (Tongxinluo) and clinical outcomes of patients with acute myocardial infarction: the CTS-AMI randomized clinical trial. JAMA. 2023;330(16):1534-1545. doi:10.1001/jama.2023.19524
3. Epstein AS, Liou KT, Romero SAD, et al. Acupuncture vs massage for pain in patients living with advanced cancer: the IMPACT randomized clinical trial. JAMA Netw Open. 2023;6(11):e2342482. doi:10.1001/jamanetworkopen.2023.42482
4. Wells JC, Sidhu A, Ding K, et al. Complementary medicine use amongst patients with metastatic cancer enrolled in phase III clinical trials. Oncologist. 2022;27(3):e286-e293. doi.10.1093/oncolo/oyac020
5. Johnson SB, Park HS, Gross CP, Yu JB. Complementary medicine, refusal of conventional cancer therapy, and survival among patients with curable cancers. JAMA Oncol. 2018;4(10):1375-1381. doi:10.1001/ jamaoncol.2018.2487
6. Hutten RJ, Weil CR, King AJ, et al. Multi-institutional analysis of cancer patient exposure, perceptions and trust in information sources regarding complementary and alternative medicine. JCO Oncol Pract. 2023;19(11):1000-1008. doi:10.1200/OP.23.00179
7. Green FL, Sobin LH. The staging of cancer: a retrospective and prospective appraisal. CA Cancer J Clin. 2008;58(3):180-190. doi:10.3322/CA.2008.0001
8. Markman M. Viewing ovarian cancer as a “chronic disease”: what exactly does this mean? Gynecol Oncol. 2006;100(2):229-230. doi:10.1016/j.ygyno.2005.08.043
9. Jung SH, Lee HY, Chow SC. Statistical methods for conditional survival analysis. J Biopharm Stat. 2018;28(5):927-938. doi:10.1080/10543406.2017.1405012