Laura Esserman, MD, MBA, entered the exam room to find a new patient, a woman in her fifties dangling her feet from the exam bench.
The patient had recently been diagnosed with ductal carcinoma in situ (DCIS), the earliest stage of breast cancer. She was looking for a second opinion.
“They say I need surgery and that I need it next week,” she explained to Esserman, director of the UCSF Breast Care Center and professor of surgery and radiology at UCSF.
Esserman’s reply was assured: “Well, you don’t really.”
DCIS, also known as stage 0 breast cancer, is considered pre-invasive or noninvasive, where abnormal cells are confined to the milk ducts and have not spread to surrounding breast tissue.
Surgery followed by radiation is considered the standard of care for treating DCIS. But instead of surgery, Esserman ordered an MRI. When imaging showed nothing appropriate for surgical removal, Esserman started the patient on endocrine therapy. The cancer never progressed. Surgery never happened. That was 5 years ago.
Skipping or delaying surgery until necessary is the advice Esserman has given hundreds of other patients with this low-risk condition. In fact, Esserman would argue those with DCIS don’t really have cancer. “It has the word carcinoma in it, but it is not a cancer,” Esserman told Medscape Medical News…
The word cancer has become so loaded that it can drive undue panic and overtreatment in patients with low-grade disease. To patients, cancer often describes something that will “aggressively grow, spread, and kill,” said Joseph Crompton, MD, PhD, a surgical oncologist at UCLA. But, in reality, “there are lot of things that we call cancer that would not harm or kill you if left untreated.”
This fundamental perception issue has stirred debate among some oncologists about whether to avoid the C-word altogether for certain early-stage cancers. Some argue that dropping the word in favor of less alarming alternatives, such as neoplasm or abnormal cells, could help allay anxiety and dissuade patients from pursuing aggressive, potentially unnecessary treatments. Others argue that removing the cancer label is disingenuous and risks causing the opposite problem: Patients may underestimate their condition and forgo adequate follow-up or treatment.
“While we don’t want patients to be anxious, we do want them to follow-up,” said Allen Kibel, MD, chief of Urology at Brigham and Women’s Hospital in Boston.
The Power of the C-Word
The aggressive, often emotional response to cancer is hardly new…
In a recent analysis, Rett and colleagues at UCLA surveyed 1600 English-speaking adults to understand how they perceived the word cancer along with three related words: carcinoma, tumor, and abnormal cells.
The team found that the cancer label was significantly more likely to be associated with fear and death than carcinoma. When asked to give a single word association to cancer, more than 25% of individuals wrote “death,” “fatal,” or something similar. Respondents reacted less strongly to the word “tumor” or “carcinoma,” while the term “abnormal cells” consistently ranked lowest in familiarity, anxiety, pain, and severity.
“Our study suggests that nomenclature changes would be extremely beneficial to patients, and could potentially combat overtreatment,” Rett and colleagues concluded.
Esserman agrees. She sees renaming DCIS, which accounts for about 20% of newly diagnosed breast cancers, as a way to stop a larger problem: Unnecessary surgery.
DCIS are slow-growing, and if left untreated, some will never progress to invasive breast cancer. For those that do progress, patients can delay more aggressive treatment without impacting outcomes.
Recent findings from the COMET trial suggest that active monitoring is safe in the short-term for women with DCIS. The trial explored outcomes among women randomized to guideline-concordant care — surgery with or without radiation — or active surveillance — regular imaging and physical exams. Both groups had the option to receive endocrine therapy as well.
Overall, the 2-year cumulative rate of ipsilateral invasive cancer was similar in the two groups — 5.9% in the surgery group vs 4.2% in the surveillance group. Among patients who added endocrine therapy — 65.5% in the surgery group and 71.3% in the active surveillance group — the rate of ipsilateral invasive cancer at 2 years was 7.15% in the surgery group vs 3.21% for active monitoring.
“For women with a low risk of invasive progression, guideline-concordant care may offer little clinical benefit, resulting in potential for overtreatment,” the authors concluded.
These very early lesions “can be more risky or less risky, but a lot of them will absolutely never go anywhere,” Esserman added.
In an ongoing trial, Esserman and collaborators are trying to figure out which patients are the best candidates for active surveillance. The trial will follow women with DCIS to see who can remain on surveillance after 6 months of endocrine therapy.
“After 6 months, we have a good idea of who is a good candidate for active surveillance [vs surgery],” Esserman explained.
But, in either case, “DCIS is clearly not an emergency,” she said. “You have time to learn about what the best strategy is for you.”
Beyond DCIS
This nomenclature debate in oncology extends to other early-stage cancers, especially low-grade prostate cancer.
Urologic oncologist David Penson, MD, routinely has to talk to patients with low-grade prostate cancer out of aggressive treatment.
“I can’t tell you the number of patients coming with low-grade prostate cancer, saying they have heard of this drug or that on TV. And I tell them, ‘It is a great drug, but I hope I never have to give it to you,’” said Penson, professor and chair of the Department of Urology at Vanderbilt University Medical Center in Nashville, Tennessee.
Current guidelines recommend active surveillance as the preferred management option for most men with low-risk prostate cancer. While only about 60% of these patients opt for a watch and wait strategy, research shows that many with the lowest-risk form of prostate cancer, known as grade group 1, can remain treatment-free for many years. One study found that the treatment-free probability for men with grade group 1 disease was 76% at 5 years, 64% at 10 years, and 58% at 15 years.
Importantly, most patients who opt for active surveillance won’t die from prostate cancer. A 2020 analysis found that the risk for metastasis or death from prostate cancer was under 1% among more than 1800 men with grade group 1 disease undergoing active surveillance.
Recategorizing low-risk prostate cancer as a precancer or tumor could reduce patient overreaction and potential overtreatment, Penson said.
However, critics of dropping the C-word argue that such a change could do more harm than good and lead to inadequate monitoring or undertreatment.
For instance, about 10% of patients with prostate cancer on active surveillance don’t follow-up as recommended, and Kibel worries that, if the field stops calling these conditions cancer, patients may be more likely to misunderstand the need for follow-up care.
Even with a name change, patients will still be asked to come in for repeat testing, as if they do have cancer, Kibel said. “I think that’s gonna cause a lot more conflict in the patient and the patient will continue to be anxious.”
Chin-Yee is concerned that removing the word cancer will give it too much power. “When we shy away from naming something, it reinforces the idea that something is too bad to speak about,” he said.
Plus, avoiding the word “cancer” doesn’t necessarily mean a patient’s condition is benign or risk-free, explained Ming Zhou, chief of pathology at Mount Sinai in New York City.
A large analysis of more than 117,000 men with grade group 1 prostate cancer suggests that tumor pathology matters. Compared with patients with the lowest risk disease, those in higher risk grade group 1 categories had an increased risk for prostate cancer-specific mortality (adjusted hazard ratio [aHR], 1.6 for favorable intermediate-risk; aHR, 2.1 for unfavorable intermediate-risk; aHR, 3.58 for high-risk). At 10 years, that translated to prostate cancer-specific mortality rates of 1.3% for low-risk disease, 2.0% for favorable intermediate-risk, 2.4% for unfavorable intermediate-risk, and 4.7% for high-risk.
Among pathologists, there’s concern that dropping the C-word could cause cancers to be undertreated, explained Zhou.
Ultimately, the most full-proof way to de-escalate treatment is better molecular or artificial intelligence-based tools to identify which low-grade cancers will remain harmless and which few will become aggressive, Zhou said.
What to Tell Patients
Changing the name of the disease takes a concerted effort, and to do so, the field must be in agreement. The debate around grade group 1 prostate cancer and DCIS doesn’t carry that kind of consensus yet.
The good news, Rett explained, is there are more immediate ways for oncologists to help patients avoid anxiety and overtreatment. It starts in the exam room, with oncologists taking the time to help patients unpack their perceptions around cancer as a deadly, fast spreading disease, and put it into context of their diagnosis.
Using clarifying phrases like “not all cancer grows or spreads quickly,” “not all cancer needs treatment,” and “not all cancer kills” can help, Rett said.
Rett also recommends leading with prognosis instead of diagnosis. Rather than naming the cancer right off, try something like: “We found some atypical cells in your body. This particular type of atypical cell has a 0.1% chance of fatality.”
This explanation allows everyone to get on the same page about the level of danger, before the word cancer is ever mentioned, she said.
Penson advocates for getting loved ones in the room. He’s had many patients leave his office feeling okay about their diagnosis, only to come back in search of aggressive treatment because their wife, golf buddies, or church group said active surveillance is not enough. “The triad — patient, loved one, and doctor — needs to be on the same page.”
It also helps, he said, to show patients — not just tell them — that active surveillance is still doing something by connecting them to other men who have been on active surveillance, even those who eventually went on to need treatment. New patients need to hear someone say, “I lived three years or five years without treatment,” Penson said.
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