New Cancer Data Spark Outcry From Patient Advocates

Howard Wolinsky

January 26, 2023

Newly released figures showing a rise in the number of men with advanced prostate cancer have laid bare long-simmering resentment among patient advocates who feel the nation's leading cancer group has largely ignored their concerns for years.

The American Cancer Society this month revealed what it called "alarming" news about prostate cancer: After two decades of decline, the number of men diagnosed with the disease in the United States rose by 15% from 2014 to 2019.

"Most concerning," according to the group's CEO Karen Knudsen, PhD, MBA, is that the increase is being driven by diagnoses of advanced disease.

Dr Karen Knudsen

"Since 2011, the diagnosis of advanced-stage (regional- or distant-stage) prostate cancer has increased by 4%–5% annually and the proportion of men diagnosed with distant-stage disease has doubled," said Knudsen at a press conference this month concerning the figures. "These findings underscore the importance of understanding and reducing this trend."

The increase, which works out to be an additional 99,000 cases of prostate cancer, did not take the ACS by surprise; the group has been predicting a jump in diagnoses of the disease, which is the most common cancer in men after skin cancer, and the second most common cause of cancer death for that group.

The ACS announced a new action plan, "Improving Mortality from Prostate Cancer Together" — or IMPACT — to address the rise, especially in Black men, and to curb the increasing rate of advanced, difficult-to-treat cases.

Dr William Dahut

"We must address these shifts in prostate cancer, especially in the Black community, since the incidence of prostate cancer in Black men is 70% higher than in White men and prostate cancer mortality rates in Black men are approximately two to four times higher than those in every other racial and ethnic group," William Dahut, MD, PhD, chief scientific officer for the ACS, said at the press conference. (A study published this month challenged that claim, finding that, after controlling for socioeconomic factors, race does not appear to be a significant predictor of mortality for prostate cancer.)

Dahut told Medscape Medical News that IMPACT "is still [in the] early days for this initiative and more details will be coming out soon."

Charles Ryan, MD, chief executive officer of the Prostate Cancer Foundation, the world's largest prostate cancer research charity, called IMPACT "extremely important work. Highlighting the disparities can only serve to benefit all men with prostate cancer, especially Black men."

Bold Action…or Passivity?

Overall cancer mortality has dropped 33% since 1991, averting an estimated 3.8 million deaths, according to ACS. But the story for prostate cancer is different.

The society and advocates had warned as recently as 2 years ago that prostate cancer was poised to rise again, especially advanced cases that may be too late to treat.

Leaders in the prostate cancer advocacy community praised the ACS plan for IMPACT, but some expressed frustration over what they said was ACS' passivity in the face of long-anticipated increases in cases of the disease.

"I think prostate cancer was not high on their agenda," said Rick Davis, founder of AnCan, which offers several support groups for patients with prostate cancer.  "It's good to see ACS get back into the prostate cancer game."

Darryl Mitteldorf

Davis and patient advocate Darryl Mitteldorf, LCSW, founder of Malecare, another prostate support organization, said ACS dropped patient services for prostate cancer patients a decade ago and has not been a vocal supporter of screening for levels of prostate-specific antigen (PSA) to detect prostate cancer early.

"Early detection is supposed to be their goal," Davis said.

In 2012, the US Preventive Services Task Force (USPSTF) recommended against PSA screening, giving it a D-rating. The move prompted attacks on the task force from most advocates and many urologists.

Following this criticism, the task force recommended shared decision-making between patient and doctor, while giving PSA screening a C-rating. Now, the ACS recommends men in general at age 50 discuss prostate cancer screening with their doctor and that Black men do the same at age 45.

Mitteldorf said ACS "owes prostate cancer patients an explanation and analysis of its response to the USPTF's downgrade of PSA testing and how that response might be related to death and instance rates."

Mitteldorf added that male patients lost key support from ACS when the group dismantled its Man to Man group for prostate cancer patients and its Brother to Brother group for Blacks in particular.

Dahut said Man to Man "sunsetted" and was turned over to any local organization that chose to offer it.  He said longtime staff didn't have "a lot of information about [the demise of] Brother to Brother."

For Davis, those smaller cuts add up to a much larger insult.

Rick Davis

"Today, in 2023, ACS continues to poke a finger in the eyes of prostate cancer patients," he said. "Since 2010, they have not given us any respect. ACS dumped its support."

He pointed to the group's funding priorities, noting that outlays for prostate cancer have consistently lagged behind those for breast cancer.

The ACS spent $25.3 million on breast cancer research and $6.7 million for prostate cancer in 2018, and in 2023 will designate $126.5 for breast cancer research and $43.9 million for prostate cancer.

ACS has earmarked $62 million this year for lung cancer programs and $61 million for colorectal cancer.

"Parity between breast cancer and prostate cancer would be a good start in sizing the IMPACT program," Davis said. "After all, breast cancer and prostate cancer are hardly different in numbers today."

Dahut denied any gender bias in research funding. He said the group makes funding decisions "based on finding the most impactful science regardless of tumor type. Our mission includes funding every cancer, every day; thus, we generally do not go into our funding cycle with any set-asides for a particular cancer."

Davis also said the ACS data suggest the growing number of prostate cancer cases is even worse than the group has said. Although the society cites a 3% annual increase in prostate cancer diagnoses from 2014–2019, since 2019 the annual increase is a much more dramatic 16%. Meanwhile, the number of new cases of the disease is projected to rise from 175,000 per year in 2019 to 288,000 this year.

Dahut said the society used the 2014–2019 timeframe for technical reasons, separating confirmed cases in the earlier period from estimated cases in recent years.

"We discourage comparing projected cases over time because these cases are model-based and subject to fluctuations," Dahut said.

Howard Wolinsky is a Chicago-based journalist and editor of The Active Surveillor, a newsletter covering prostate cancer. He was diagnosed nearly 13 years ago with low-risk prostate cancer. He is co-founder of the AnCan Virtual Support Group on Active Surveillance.

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