What to know about prostate cancer following Francis Collins’ diagnosis

When Francis S. Collins first learned that his prostate-specific antigen levels were rising, he wasn’t particularly worried. A slow rise in PSA levels, which can indicate the presence of prostate cancer, is common in men older than 65, and most never develop severe disease.

However, when the former director of the National Institutes of Health underwent an MRI about a month ago, the scan revealed an enlarged tumor. By then, his PSA levels had also spiked, and he knew his diagnosis had drastically changed.

Now, the 73-year-old scientist has announced that he will have to undergo a radical prostatectomy, a surgical procedure that removes the prostate gland.

In a personal essay for The Washington Post, Collins details his journey to a prostate cancer diagnosis and his decision to go public with the news. He emphasizes the importance of early detection and clinical trials, and he highlights the pervasive health inequities in screening and treatments, including among Black men, who have a higher risk of getting the disease and dying from it.

By sharing his story, Collins expressed his desire to “lift the veil and share lifesaving information.”

Here’s what you need to know about prostate cancer, from early symptoms to treatment options.

What is prostate cancer?

Prostate cancer is a type of cancer that occurs in the prostate gland, which is a small gland that produces the seminal fluid that nourishes and transports sperm. It is one of the most common types of cancer among men, especially older men. It usually grows slowly and initially remains confined to the prostate gland, where it may not cause serious harm.

However, some types of prostate cancer can be aggressive and spread quickly to other parts of the body, including the bones. PSA testing in combination with a physical exam are the best way to catch early aggressive prostate cancer. Symptoms can include pain or difficulty urinating, more frequent urination, and blood in urine or semen. But by the time symptoms show, the cancer has usually progressed to a more advanced stage that can be harder to treat.

How common is prostate cancer?

In 2020, prostate cancer was the second-most commonly diagnosed cancer and the fifth-leading cause of cancer-related deaths in the U.S., according to the National Cancer Institute. According to 2020 data published in the journal Frontiers in Public Health, there were approximately 1,414,000 new cases globally, and 375,304 deaths. It is the most frequently diagnosed cancer in 112 countries and the leading cause of cancer death in 48 of those countries.

Black men tend to be diagnosed at a more advanced stage of the disease and have a higher mortality rate. Men with BRCA1 and BRCA2 tumor suppressor genes also have an increased risk of developing more aggressive prostate cancer. A 2023 study published in the journal Nature found that carriers of BRCA2 mutations had a greater likelihood to be diagnosed with aggressive prostate cancer at a younger age compared with non-carriers.

How is prostate cancer treated?

Prostate cancer can be treated with a range of approaches including active surveillance, surgery that may involve removing the prostate, radiation therapy, hormone therapy, chemotherapy, immunotherapy and targeted therapies. Treatment selection is based on factors such as cancer stage, aggressiveness, patient health and preferences.

It is considered a treatable disease if caught early; 99% of men with the cancer will live for at least five years after their diagnosis if it has not spread beyond the prostate, according to the Cleveland Clinic.

What are some complications associated with prostate cancer?

Prostate cancer can lead to various complications that can affect a person’s quality of life, including erectile dysfunction, urinary incontinence, bowel problems, infertility, fatigue and bone health issues.

When should men be screened for prostate cancer?

The U.S. Preventive Services Task Force recommends screening between ages 55 to 69. Men with a family history of prostate cancer, especially if a father or brother had it, have an increased risk of developing the disease, and they may need to be screened at an earlier age, around 50 years old.

Screenings are usually stopped after 70 for many reasons, one being that the risks of diagnosing slow-growing cancer may cause undue mental stress when the disease may not pose a significant threat to the person’s health. Another reason is that PSA tests can sometimes lead to false positives, and patients may be overdiagnosed with indolent cancer.

However, the American Cancer Society said it is currently revising prostate cancer guidelines, which includes the age for stopping screenings.

Karen Knudsen, CEO of the American Cancer Society and a prostate cancer researcher, said the initiative was started two years ago. She added that the updated guidelines reflect the aging population, prompting a reevaluation of the current cancer guidelines to emphasize early detection since this cancer is readily treatable.

“As the population ages, the window of time that someone will develop prostate cancer expands,” Knudsen said.

Does prostate cancer affect sexual function?

Prostate cancer and its treatments can have significant effects on sexual function in men. Various issues can arise depending on the cancer stage and the type of treatment received. One common effect is erectile dysfunction because surgery, radiation therapy, hormone therapy and other treatments can damage nerves and blood vessels essential for achieving and maintaining an erection.

Additionally, some treatments may reduce libido or sexual desire. Changes in ejaculation and fertility issues can also be experienced due to prostate cancer treatments.

Rena Malik, a urologist based in Southern California, says that many men tend to have erectile dysfunction before they have prostate cancer surgery, and the procedure exacerbates the problem. But that doesn’t mean sexual function “is destroyed,” she said.

“There are lots of protocols for men to try to preserve erectile function, like putting them on medications or using vacuum erection devices very soon after surgery to try to preserve sexual function,” said Malik. “But ultimately, erectile dysfunction is something that is a risk of surgery.”