Why am I going public about this cancer that so many men don't want to talk about? It's because I want to lift the veil and share life-saving information. I also want all men to benefit from the medical research to which I have dedicated my career and which now guides my care.
Five years before that fateful PET scan, my doctor noticed that my PSA (prostate-specific antigen blood test) was slowly rising. To contribute to knowledge and receive expert treatment, I enrolled in a National Institutes of Health clinical trial. This is the agency I led from 2009 until the end of 2021.
At first, there was no need to worry too much. Targeted biopsies identified indolent, aggressive prostate cancers that didn't require treatment and could be tracked with regular tests called “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 the age of 65 (I'm 73) have low-grade prostate cancer. Many of them are completely unaware of it, and few develop advanced disease.
Why am I going public about this cancer that so many men don't want to talk about? Because I want to lift the veil and share life-saving information.
But for me, about a month ago, my PSA spiked to 22 and things started to look up. Normal for my age he is less than 5. An MRI scan showed that the tumor had expanded significantly and may even have broken through the capsule surrounding it. It poses a serious risk that cancer cells can spread to other parts of the body.
A new biopsy taken from the mass showed more aggressive cancerous changes. When I heard the diagnosis that my cancer grade was 9 and up to 10, I knew everything had changed.
Therefore, the PET scan ordered to determine whether the cancer had spread beyond the prostate was of great importance. Is treatment still possible or is it time to get my affairs in order? A few hours later, when the doctor showed me the scan results, I felt a deep sense of relief and gratitude. There was no detectable evidence of cancer outside of the primary tumor.
Later this month, I am scheduled to undergo radical prostatectomy, which involves removing the entire prostate gland. This will be part of the same his NIH research protocol. I want you to learn as much information as possible from my case to help others in the future.
Although there are no guarantees, my doctor believes there is a good chance I will be cured with surgery.
My situation is much better than that of my father, who was diagnosed with prostate cancer 40 years ago. He was about the same age as I am now, but at that time it was impossible to assess how advanced the cancer was. He received hormone therapy, which may not have been necessary and had a significant negative impact on his quality of life.
Thanks to NIH-supported research and highly effective collaboration with the private sector, we can now individually and precisely treat prostate cancer and improve outcomes.
As in my case, high-resolution MRI scans can now be used to pinpoint the exact location of the tumor. When combined with real-time ultrasound, it becomes possible to pinpoint prostate biopsies. My surgeon will be assisted by a sophisticated robot named after Leonardo da Vinci, which uses a minimally invasive surgical approach. than previous techniques, Only a few small incisions are required.
Advances in clinical treatment are informed by large, rigorously designed trials that evaluate risks and benefits, and are made possible by the willingness of cancer patients to participate in such trials.
I feel like this story needs to be told openly. I hope it helps someone. I don't want to waste time.
If the cancer returns, DNA analysis performed on the tumor can help choose the correct treatment. As a researcher privileged to lead the Human Genome Project, it is truly gratifying to see how advances in genomics have changed cancer diagnosis and treatment.
I want all men to have the same opportunities as me. Prostate cancer remains the second leading killer of men. I hope that the goal of the cancer moonshot is achieved: eradicating cancer as we know it. Early detection is really important, and combined with active surveillance, we can identify dangerous cancers like mine and leave the rest alone. According to the American Cancer Society, his five-year relative survival rate for prostate cancer is 97%, but only 34% if the cancer has spread to distant areas of the body.
However, a lack of information and confusion about the best approach to prostate cancer screening is hindering progress. Currently, the U.S. Preventive Services Task Force recommends that all men between the ages of 55 and 69 discuss PSA screening with their physicians, but does not recommend starting PSA screening after age 70. Not yet.
Other groups, such as the American Urological Association, suggest testing should start earlier, especially for men with a family history like mine and African-American men who are at higher risk for prostate cancer. ing. However, these recommendations are not consistently followed.
Our healthcare system is plagued by health inequalities. For example, image-guided biopsies are not available everywhere and to everyone. Finally, many men fear surgical approaches to prostate cancer because of the risks of incontinence and impotence, but advances in surgical technology have made these outcomes much less onerous than they used to be. Similarly, great advances have been made in alternative treatments such as radiation therapy and hormone therapy.
A little more than a year ago, while praying for a friend who had passed away, I had the experience of receiving a clear and unmistakable message. Something like this has almost never happened to me. It was just this, “Don't waste your time, there may not be much left.” Gulp.
Now that I have been diagnosed with advanced prostate cancer and am grateful for all that I have benefited from advances in research, 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 Director of the National Human Genome Research Institute at NIH from 1993 to 2008. He is a physician geneticist and is leading the White House effort to eliminate hepatitis C. In the United States, he continues to pursue his research interests as a Distinguished Investigator at the NIH.
