Francis Collins :The Reason Behind My Decision to Publicly Disclose My Prostate Cancer Diagnosis

Over the course of my 40-year career as a physician-scientist, I have had the privilege of counseling numerous patients who are grappling with serious medical diagnoses. During this time, I have witnessed firsthand the agonizing ordeal of awaiting the results of crucial blood tests, biopsies, or scans that could profoundly impact their future aspirations.

Nevertheless, my recent experience was profoundly different. I found myself reclined in the PET scanner, awaiting any indication that my aggressive prostate cancer had metastasized. For those harrowing 30 minutes, I turned to silent prayer. If the cancer had indeed migrated to my lymph nodes, bones, lungs, or brain, there was still a chance of treatment, but it would no longer be curative.

So why do I choose to share this deeply personal encounter with cancer, a subject that many men find difficult to discuss? My objective is to bring illumination to the situation and disseminate life-saving information. I yearn for all men to benefit from the medical research that has been the focal point of my career and is now informing my own treatment.

Five years before the PET scan, my physician had observed a gradual elevation in my prostate-specific antigen (PSA) levels – a blood test used to identify prostate cancer. In an effort to contribute to research and receive expert care, I made the decision to partake in a clinical trial at the National Institutes of Health, the organization I presided over from 2009 until late 2021.

Initially, there was minimal cause for alarm. Targeted biopsies unveiled a slow-growing grade of prostate cancer that did not necessitate immediate intervention. Instead, it could be vigilantly monitored through regular check-ups – a process commonly referred to as “active surveillance.” This initial diagnosis did not come as a shock. Prostate cancer is the most commonly diagnosed cancer in American men, and roughly 40 percent of men above the age of 65, myself included at the age of 73, have low-grade prostate cancer. Many of these cases go unnoticed, with only a small percentage progressing to advanced stages.

However, a month ago, my PSA levels experienced an abrupt surge, reaching a striking 22 – significantly surpassing the normal range for my age, which is less than 5. An MRI scan unveiled substantial enlargement of the tumor, with the potential breach of the capsule enveloping the prostate. This posed a substantial risk of cancer cell dissemination to other regions of my body.

Sequential biopsies confirmed that the cancer had mutated into a significantly more aggressive form. Upon learning that the cancer was now rated 9 on a scale that only reaches 10, I knew that everything had irrevocably shifted.As a result, the PET scan has become a critical tool in determining the presence of metastasis in prostate cancer. This pivotal information serves to ascertain the viability of a potential cure or the need for preparing for the future. Hours later, as my doctors disclosed the scan results, a profound sense of relief and gratitude washed over me. There was no discernible evidence of cancer beyond the primary tumor.

Later this month, I will undergo a radical prostatectomy, in which the entire prostate gland will be surgically removed. This procedure is part of the distinguished NIH research protocol, and I am hopeful that my case will yield valuable insights to benefit others in the future.

While no guarantees can be made, my doctors hold a high level of confidence in the curative potential of the upcoming surgery.

The disparity between my current situation and that of my father, who was diagnosed with prostate cancer four decades ago, is stark. At that time, accurately determining the cancer’s advancement was impossible. Consequently, he received hormonal therapy that may have been unnecessary and had a significant detrimental impact on his quality of life.

Thanks to NIH research and fruitful collaborations with the private sector, the landscape of prostate cancer treatment has undergone remarkable improvements. Precision medicine allows for customized treatment plans, while advanced imaging techniques such as high-resolution MRI scans facilitate precise identification of tumor location. Real-time ultrasound technology aids in precise targeting during biopsies. The surgical procedure itself is a minimally invasive process carried out with the assistance of Leonardo da Vinci, a sophisticated robotic system, necessitating only a few minor incisions.

The commendable progress achieved in clinical treatments owes its existence to large-scale, meticulously executed trials that thoroughly evaluate risks and benefits. These trials are made possible by the invaluable participation of cancer patients.

Should my cancer reoccur, an in-depth DNA analysis conducted on my tumor will skillfully guide the selection of suitable therapeutic interventions. As someone who spearheaded the groundbreaking Human Genome Project, I take great pleasure in witnessing the transformative impact of genomics on cancer diagnosis and treatment.I firmly believe that it is essential for all men to have equal access to the same opportunities that I have been fortunate enough to experience. Prostate cancer continues to be the second leading cause of death among men, underscoring the urgent need to achieve the objectives of the Cancer Moonshot initiative and strive towards the eradication of this disease as we presently know it. Early detection plays a pivotal role in this endeavor, as it can effectively identify aggressive forms of cancer like the one I myself have been diagnosed with, while sparing others from unnecessary treatment. According to the American Cancer Society, the five-year relative survival rate for prostate cancer stands at an encouraging 97 percent. However, this rate drastically declines to a mere 34 percent when cancer has metastasized to distant parts of the body.

Regrettably, progress in addressing prostate cancer has been impeded by a lack of information and confusion surrounding optimal screening methodologies. Presently, the U.S. Preventive Services Task Force recommends that all men between the ages of 55 and 69 engage in a discussion about prostate-specific antigen (PSA) screening with their primary care physician, while cautioning against commencing such screenings after the age of 70. Conversely, other organizations, such as the American Urological Association, propose that screening should commence earlier, particularly for individuals with a family history of the disease or African American men who face an elevated risk. Nevertheless, adherence to these recommendations remains inconsistent.

Our healthcare system is burdened by disparities in access to care. For instance, image-guided biopsies are not universally available, further exacerbating inequities in prostate cancer diagnosis. Additionally, many men harbor reservations about surgical intervention due to concerns about potential side effects like incontinence and impotence. However, advancements in surgical techniques have substantially mitigated these apprehensions compared to the past. Similarly, radiation and hormonal therapies have made significant progress as viable alternative treatment options.

A little over a year ago, while praying for a dying friend, I experienced a profound and unmistakable message. As someone who seldom encounters such occurrences, it took me by surprise. The message simply stated, “Do not squander your remaining time, for it may be limited.” I was deeply affected by this revelation.

Now, having received a diagnosis of aggressive prostate cancer and recognizing the benefits I have personally derived from advancements in research, I feel a strong obligation to share my story openly. My sincere hope is that it may prove beneficial to others. I am resolved not to waste the precious time I have left.

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