Former NIH director Collins on his prostate cancer, medical research

Why am I going public about this cancer that many men are uncomfortable talking about? Because I want to lift the veil and share lifesaving information, and I want all men to benefit from the medical research to which I’ve devoted my career and that is now guiding my care.

Five years before that fateful PET scan, my doctor had noted a slow rise in my PSA, the blood test for prostate-specific antigen. To contribute to knowledge and receive expert care, I enrolled in a clinical trial at the National Institutes of Health, the agency I led from 2009 through late 2021.

At first, there wasn’t much to worry about — targeted biopsies identified a slow-growing grade of prostate cancer that doesn’t require treatment and can be tracked via regular checkups, referred to as “active surveillance.” This initial diagnosis was not particularly surprising. Prostate cancer is the most commonly diagnosed cancer in men in the United States, and about 40 percent of men over age 65 — I’m 73 — have low-grade prostate cancer. Many of them never know it, and very few of them develop advanced disease.

Why am I going public about this cancer that many men are uncomfortable talking about? Because I want to lift the veil and share lifesaving information.

But in my case, things took a turn about a month ago when my PSA rose sharply to 22 — normal at my age is less than 5. An MRI scan showed that the tumor had significantly enlarged and might have even breached the capsule that surrounds the prostate, posing a significant risk that the cancer cells might have spread to other parts of the body.

New biopsies taken from the mass showed transformation into a much more aggressive cancer. When I heard the diagnosis was now a 9 on a cancer-grading scale that goes only to 10, I knew that everything had changed.

Thus, that PET scan, which was ordered to determine if the cancer had spread beyond the prostate, carried high significance. Would a cure still be possible, or would it be time to get my affairs in order? A few hours later, when my doctors showed me the scan results, I felt a rush of profound relief and gratitude. There was no detectable evidence of cancer outside of the primary tumor.

Later this month, I will undergo a radical prostatectomy — a procedure that will remove my entire prostate gland. This will be part of the same NIH research protocol — I want as much information as possible to be learned from my case, to help others in the future.

While there are no guarantees, my doctors believe I have a high likelihood of being cured by the surgery.

My situation is far better than my father’s when he was diagnosed with prostate cancer four decades ago. He was about the same age that I am now, but it wasn’t possible back then to assess how advanced the cancer might be. He was treated with a hormonal therapy that might not have been necessary and had a significant negative impact on his quality of life.

Because of research supported by NIH, along with highly effective collaborations with the private sector, prostate cancer can now be treated with individualized precision and improved outcomes.

As in my case, high-resolution MRI scans can now be used to delineate the precise location of a tumor. When combined with real-time ultrasound, this allows pinpoint targeting of the prostate biopsies. My surgeon will be assisted by a sophisticated robot named for Leonardo da Vinci that employs a less invasive surgical approach than previous techniques, requiring just a few small incisions.

Advances in clinical treatments have been informed by large-scale, rigorously designed trials that have assessed the risks and benefits and were possible because of the willingness of cancer patients to enroll in such trials.

I feel compelled to tell this story openly. I hope it helps someone. I don’t want to waste time.

If my cancer recurs, the DNA analysis that has been carried out on my tumor will guide the precise choice of therapies. As a researcher who had the privilege of leading the Human Genome Project, it is truly gratifying to see how these advances in genomics have transformed the diagnosis and treatment of cancer.

I want all men to have the same opportunity that I did. Prostate cancer is still the No. 2 killer of men. I want the goals of the Cancer Moonshot to be met — to end cancer as we know it. Early detection really matters, and when combined with active surveillance can identify the risky cancers like mine, and leave the rest alone. The five-year relative survival rate for prostate cancer is 97 percent, according to the American Cancer Society, but it’s only 34 percent if the cancer has spread to distant areas of the body.

But lack of information and confusion about the best approach to prostate cancer screening have impeded progress. Currently, the U.S. Preventive Services Task Force recommends that all men age 55 to 69 discuss PSA screening with their primary-care physician, but it recommends against starting PSA screening after age 70.

Other groups, like the American Urological Association, suggest that screening should start earlier, especially for men with a family history — like me — and for African American men, who have a higher risk of prostate cancer. But these recommendations are not consistently being followed.

Our health-care system is afflicted with health inequities. For example, the image-guided biopsies are not available everywhere and to everyone. Finally, many men are fearful of the surgical approach to prostate cancer because of the risk of incontinence and impotence, but advances in surgical techniques have made those outcomes considerably less troublesome than in the past. Similarly, the alternative therapeutic approaches of radiation and hormonal therapy have seen significant advances.

A little over a year ago, while I was praying for a dying friend, I had the experience of receiving a clear and unmistakable message. This has almost never happened to me. It was just this: “Don’t waste your time, you may not have much left.” Gulp.

Having now received a diagnosis of aggressive prostate cancer and feeling grateful for all the ways I have benefited from research advances, I feel compelled to tell this story openly. I hope it helps someone. I don’t want to waste time.

Francis S. Collins served as director of the National Institutes of Health from 2009 to 2021 and as director of the National Human Genome Research Institute at NIH from 1993 to 2008. He is a physician-geneticist and leads a White House initiative to eliminate hepatitis C in the United States, while also continuing to pursue his research interests as a distinguished NIH investigator.