PSA screening has undoubtedly contributed to a dramatic decrease in age-adjusted prostate cancer mortality,¹ but has also ushered in a dual pandemic: (1) millions of men who have been unnecessarily diagnosed and treated for a “cancer” never destined to cause symptoms or shorten their lifespan, and (2) not enough men undergoing screening. We can do better; we must do better.

Active surveillance (AS) is an important step in the right direction. Although data supporting AS have been available for more than 15 years, 40% of US men still undergo immediate treatment for low-risk prostate cancer.² In some countries it’s < 10%, while in others it’s > 90%. Despite all international guidelines recommending AS as the preferred management for low-risk disease—all with Grade Group (GG) 1—there remains an extraordinarily large group of men undergoing unnecessary treatment.

Cancer is a loaded term and frequently alters self-image and mental health. Even among men with GG1 on AS, there are increased levels of anxiety,³ suicide,⁴ financial toxicity,⁵ difficulties obtaining life insurance,⁶ and the semiregular testing including biopsies. I frequently tell men I wish I could undiagnose their GG1.

Nearly every prostate cancer specialist acknowledges the goal of screening is to identify those with GG2 or higher. There has been notable progress through biomarkers and MRI, all proven and appropriately marketed to diagnose fewer men with GG1, despite 30% to 50% of all men over the age of 50 having it.⁷ GG1 is a natural part of aging. It is natural but inappropriate to continue calling it a cancer. There is a rich body of literature in the social sciences evaluating the human behavioral tendency to stick to preexisting beliefs and reject fresh ideas that contradict them, despite adequate evidence (eg, the Semmelweis reflex, a form of cognitive bias).⁸

Until someone shows me otherwise, I am not aware of anyone with a metastasis or death from GG1 (using ISUP [International Society of Urological Pathology] 2014 standards) without higher-grade cancers simultaneously present. Among 14,000 men undergoing prostatectomy, none had GG1 with lymph node metastases,⁹ and among 12,000 men with only GG1 at prostatectomy, there were basically no deaths from prostate cancer,^10,11 despite all 26,000 of these men having GG1 for many years or even decades prior to surgery. In the Merriam-Webster Dictionary, cancer is defined as “a malignant tumor of potentially unlimited growth that expands locally by invasion and systemically by metastasis.” Pure GG1 literally cannot metastasize. So why are we calling it cancer?

We call it cancer due to the long-standing, entrenched, and understandable reliance on microscopy. Cancer was defined 2500 years ago by Hippocrates based on palpable, symptomatic, or metastatic disease. The microscope was invented 400 years ago, and localized prostate cancer diagnosis relies on it. With near certainty, future generations will scoff at our current definition, a microscopic lack of basal cells being the sine qua non. For example, Gleason 2 through 5 were cancers for decades until a stain for basal cells was developed and then—poof—no longer considered cancer. Patients only care about microscopic findings if it might eventually impact their quality or quantity of life.

A nomenclature downgrading, eliminating the term carcinoma or cancer, has been successfully accomplished many times before: in prostate, bladder (PUNLMP [papillary urothelial neoplasm of low malignant potential]), kidney (clear cell papillary), thyroid (NIFTP [noninvasive follicular thyroid neoplasm with papillary-like nuclear feature]), and cervical (SIL [squamous intraepithelial lesion]) cancers. For the exact same reason, it should be done for GG1: improvement of public health.

In prostate, it has been discussed by many highly experienced groups,¹² has corollaries in other cancers,¹³ and has been long-standing (since at least 2006),^14-17 although is now gathering far more traction and conversation.¹⁸ In a recent survey of 1300 physicians involved in prostate cancer care, 39% responded a name change was a “good idea,” 30% “uncertain,” and 31% “disagree.” Rates of agreement were even higher among clinicians (vs pathologists) and those who are younger, fellowship-trained in oncology, and with busier prostate cancer practices.¹⁹ Anecdotally, I’ve had countless physicians share their strong support for a name change though are “not ready yet to say it publicly.” Similarly, discrete choice experiments among prostate cancer patients, their partners, and healthy men all showed a strong preference for a name change.²⁰ Notably, 4 prominent genitourinary pathologists recently advocated for a name change: “driven by the primary goal of reducing harm for patients.”^21,22

The counterarguments are predictable and easily contested. The most common is the concern for unsampled higher-grade cancers. I’m not aware of another solid organ cancer where it is routine to treat based on what might’ve been missed on biopsy (or isn’t present at all). Additionally, all notable long-term AS series (containing many patients with unsampled higher-grade cancers) accrued for long periods of time with sextant biopsies, no MRI, or early restaging biopsies, and were prior to ISUP 2014 grading changes restricting the definition of GG1 (therefore, included many men which by modern standards had GG2).^23-25 Yet they uniformly have superb results for GG1, as low as 0.1% risk of 15-year cancer-specific mortality. Whether it be screening or AS: PSA, PSA density, biomarkers, and MRI findings should be used to risk-stratify likelihood of GG2 or higher and, if needed, consider another biopsy. If a name change ultimately occurs, this strategy would continue.

A second point is the molecular or genetic overlap between some GG1 and higher-grade cancers. This is true, though unmentioned is a similar overlap between noncancerous lesions (high-grade prostatic intraepithelial neoplasia) and higher-grade cancers (copy number alterations and ERG fusions), and I don’t hear anyone calling for them to be upgraded to a cancer.^23-25

A third concern is compliance, which I share. However, clinics are filled with millions of men with high PSAs and negative biopsies or high-grade prostatic intraepithelial neoplasia/atypical small acinar proliferation. A considerable number have unsampled high-grade prostate cancer, and I’ve never heard a urologist express concern about their compliance. For those undergoing screening or AS, we recommend follow-up, explain why, and they ultimately decide whether to. Is that any different if GG1 underwent a name change? Is it different than those with a precancerous colon polyp or a lung nodule requiring follow-up?

The rationale for a name change is robust, evidence based, has strong and growing multidisciplinary support, and most importantly would have a major net benefit on public health. Ironically, some of the loudest voices opposed to a name change also predicted AS would lead to widespread unnecessary deaths. A symposium earlier this year, with representation from all relevant specialties, patients, the CDC, the National Cancer Institute, and breast and thyroid cancer experts, purposely included a variety of perspectives and brainstormed a path forward. There are ongoing efforts in education, modeling, policy, basic science, and trial development to further the discussion for what I believe will ultimately happen and be a momentous advance in the quality of prostate cancer care.