A cancer diagnosis is scary. Some doctors say it’s time to rename low-grade prostate cancer to eliminate the alarming C-word.
Cancer cells develop in nearly all prostates as men age, and most prostate cancers are harmless despite being a form of cancer. About 34,000 Americans a year die from prostate cancer, but treating the disease even when it’s a low-risk form could lead needlessly to sexual dysfunction and incontinence.
Changing the name could prompt more of these low-risk patients to skip unnecessary surgery and radiation, says Dr. Scott Eggener of the University of Chicago, who is reviving a debate about how to explain the threat to worried patients.
“This is the least aggressive, wimpiest form of prostate cancer that is literally incapable of causing symptoms or spreading to other parts of the body,” says Eggener, who with colleagues wrote in the latest Journal of Clinical Oncology that fear of the disease can cause some patients to overreact and opt for surgery or radiation they don’t need.
The words “You have cancer” have a profound effect on people, Eggener wrote in making that argument.
Others agree.
“If you reduce anxiety, you’ll reduce over-treatment,” says Dr. David Penson of Vanderbilt University. “The word ‘cancer,’ it puts an idea in their head: ‘I have to have this treated.’ ”
Diagnosis sometimes starts with a PSA — prostate-specific antigen — blood test, which looks for high levels of a protein that could mean cancer but also could be caused by less serious prostate problems or even vigorous exercise.
When a patient has a suspicious test result, a doctor might recommend a biopsy, which involves taking samples of tissue from the prostate gland. Next, a pathologist looks under a microscope and scores the samples for how abnormal the cells look.
Often, doctors offer patients with the lowest score — Gleason 6 — a way to avoid surgery and radiation: active surveillance, which involves close monitoring but no immediate treatment.
In the United States, about 60% of low-risk patients choose active surveillance. But they might still worry.
“I would be over the moon if people came up with a new name for Gleason 6 disease,” Penson said. “It will allow a lot of men to sleep better at night.”
But Dr. Joel Nelson of the University of Pittsburgh School of Medicine said dropping the word “cancer” would “misinform patients by telling them there’s nothing wrong. There’s nothing wrong today — but that doesn’t mean we don’t have to keep track of what we’ve discovered.”
Name changes have happened previously in low-risk cancers of the bladder, cervix and thyroid. With breast cancer, there’s an ongoing debate about dropping the word “carcinoma” from one form known as DCIS or ductal carcinoma in situ.
In prostate cancer, the 1960s-era Gleason ranking system has evolved, which is how 6 became the lowest score. Patients might assume it’s a medium score on a scale of 1 to 10, but it’s actually the lowest on a scale of 6 to 10.
What to call it instead of cancer? Proposals include IDLE for indolent lesion of epithelial origin or INERRT for indolent neoplasm rarely requiring treatment.
“I don’t really give a hoot what it’s called as long as it’s not called cancer,” Eggener said.
Steve Rienks, 72, a civil engineer from Naperville, was diagnosed with Gleason 6 prostate cancer in 2014. He chose active surveillance, and follow-up biopsies in 2017 and 2021 found no evidence of cancer.
It isn’t just about what doctors could tell others with the same diagnosis he was given, Rienks says, though he thinks that would help them to be able to make informed choices.
It’s also up to them, he says, to keep asking questions until they feel confident about what treatment to go ahead with.
“It’s about understanding risk,” Rienks says. “I would encourage my fellow males to educate themselves and get additional medical opinions.”
