Do We Realise That Patients May Not Understand Medical Terms Used for Cancer?

When it comes to cancer, one of the leading complaints of patients and their relatives is not having enough information about the illness. The main reason is receiving insufficient information from doctors, or doctors using medical language that people without healthcare training find difficult to understand.

A study published on 30 November 2022 in JAMA Network Open found that patients sometimes misunderstand the medical terms used by oncologists and other doctors.

Approximately 21% of surveyed patients did not realise that “the cancer is progressing” was bad news, and 34% did not understand that “positive lymph nodes” meant that the cancer had spread.

The study included 215 patients who had not worked in medicine or received healthcare training. They completed an oral or written survey to demonstrate their understanding of medical terms.

Patients' median age was 42, and 63% were women. Most were university graduates (32.3%) or had a master's degree or doctorate (32.3%); the remainder had some university education (16.1%), an associate degree (8.3%), a high-school diploma (9.2%) or some high-school education (1.4%).

Almost all participants (96.3%) understood that negative screening results meant no cancer had been detected. 

Most patients (79.1%) understood that “your tumour is progressing” was bad news, and 66.5% understood that “positive lymph nodes” meant the cancer had spread.  

Few patients understood “febrile” (having a fever) (9.3%) or “occult infection” (1.9%). However, 75.3% understood the term “nothing by mouth”, meaning that they should fast.

These examples could be multiplied, and they also vary across cultures and languages.

Examples of difficult-to-understand oncology terms:

• “Cancer” and “tumour” are often not well understood. A tumour is an abnormal mass of tissue that may be solid or fluid-filled. Not every tumour is malignant, but every cancer is malignant, meaning it is invasive.
• “Responded to treatment” can also be misunderstood. A treatment response is a positive development for the patient.
• “Genetic” and “hereditary” are also frequently confused in cancer. All cancers are genetic: cancer cannot develop without gene damage and the accumulation of such damage. However, only about 10-15% of cancers are hereditary, meaning that altered genes passed down by parents are responsible for inherited cancers. Therefore, genetic testing in cancer should first be understood as screening for gene changes that can trigger cancer development. Tests performed to establish whether a cancer is hereditary are different (see genetic testing in cancer).

These findings show that many medical terms commonly used in cancer are misunderstood, with the interpreted meaning often the opposite of what was intended. Medical expressions should therefore be avoided as far as possible, and explanations should be clear when talking with patients and relatives.