The scope of the 'cancer' label debate

In the last year, several cancers have been the subject of debate regarding whether the label of "cancer" should be applied to them.

In 2024, low-risk prostate cancer entered the spotlight as a disease that might be better called benign. This month, a similar argument was made for ductal carcinoma in situ, a common breast cancer diagnosis that describes cancer cells that are confined to the lining of the milk ducts. A few others, including early stage cancers in the lung, thyroid, esophagus, bladder, cervix and skin, have also been debated.

At the core of the issue is the stigma that surrounds the word cancer and the fear it instills in patients. 

The case against 'cancer' labels

When a patient hears the word "cancer," they often associate that with a disease that is trying to kill them. 

"The word 'cancer' engenders so much anxiety and fear," Laura Esserman, MD, a professor of surgery and radiology at the University of California San Francisco and director of its breast care center, told The Wall Street Journal. "Patients think if I don't do something tomorrow, this is going to kill me. In fact, that's not true." 

For many early stage cancers, the best practice can be active surveillance. Studies have found surgery and radiation are unnecessary and overused in patients with DCIS. Aggressive treatments can also be unnecessary in prostate cancers, yet physicians say they have some patients who choose aggressive treatment. 

Changing the label on some of these early cancers could help patients be more open to active surveillance and prevent unnecessary treatment. 

Suggestions for alternative labels include abnormal cells, premalignant lesions, precancer, benign and stage 0 cancer.

The case for 'cancer' labels

For most patients, DCIS will not spread or cause problems, but for 25%, it can develop into an invasive breast cancer. A similar situation can materialize  with prostate cancer, which is why active surveillance is necessary. Some experts worry that removing the cancer label may cause patients to not keep up with surveillance.

In low-risk prostate cancer, more than 40% of men who choose active surveillance already have poor follow-up. Some experts worry that calling it something other than cancer would push that rate higher. 

"Like, we're going to call it this code word for cancer, but the patients won't be scared because they won't know what that means," Shelley Hwang, MD, a surgical oncologist at Durham, N.C.-based Duke University and lead author of the recent DCIS trial, told The New York Times. "It's a little disingenuous."

Physicians in favor of keeping the cancel label propose an alternative solution to reducing patient anxiety: better education about low-grade cancers and the efficacy of active surveillance.

"Our challenge is to help them navigate next steps and understand that in some circumstances, aggressive treatment is not necessary," Neema Navai, MD, professor and deputy chair in the department of urology at The University of Texas MD Anderson Cancer Center in Houston, said in an op-ed published by Becker's. "These conversations are often the longest and most nuanced we have at our clinic."

Educating patients on the process of active surveillance and the steps that come to ensure meaningful treatment can reduce anxiety while also helping patients understand the potential risks.

"While we may not be able to reduce the stigma of receiving a diagnosis in the near future, we can commit to taking the time to actively partner with our patients from day one," Dr. Navai said. "We can commit to educating them about options and identifying a plan for active surveillance, tailoring our strategies to their needs."

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