Dr. Francis Collins revealed that he has prostate cancer, and that it recently transformed into a larger, more aggressive cancer. Why did he share this personal news? Because he wants to share lifesaving information about prostate cancer, the most common cancer and the #2 cause of cancer death among men in the United States.
Dr. Collins served as the director of the National Institutes of Health from 2009 to 2021. But genetics geeks, like myself, remember him as the director of the National Human Genome Research Institute from 1993 to 2008, during which time the human genome was sequenced. This accomplishment was one of the greatest medical breakthroughs of our generation. And its promise is still unfolding twenty years later, with new tests, discoveries, and precision medicines being developed based on genomic technologies.
There is an opportunity for some men who discover their prostate cancer at an early stage to consider ‘active surveillance’ instead of more radical, traditional approaches. For some men with an inherited form of prostate cancer, such as those with a BRCA2 mutation, the cancer may be more aggressive. For these men, ‘active surveillance’ may not be the recommended course of action.
What can the average person take away from Dr. Collins’ story and the risk of prostate cancer?
· Prostate cancer is common, with 1 in 8 men developing the disease over their lifetime.
· Prostate cancer does not have to be a death sentence. Many men with prostate cancer will live with the disease and die of something else.
· By age 45, everyone with a prostate gland should discuss their risk of prostate cancer and the pros and cons of prostate screening with their clinician, as well as the recommended age to consider screening.
· Men with a family history of the disease, and African American men, should consider screening by age 45. If you have a family history of prostate cancer that includes a close relative diagnosed before age 55, consider screening 10 years earlier than the first prostate cancer diagnosis in your family. If you carry a BRCA2 mutation, screening should begin by age 40.
· Every person should research and document their family history of cancer. Share this information with your family members and keep a copy of this information with your other vital records.
· Your cancer family history should include both sides of your family, the age of diagnosis of each cancer, and not only prostate cancer, but every type of cancer.
· In addition to having relatives with prostate cancer, other things in your family history can increase your risk of prostate cancer, including:
o A family history of breast, ovary, fallopian tube, and/or pancreas cancer in close relatives;
§ Cancers diagnosed at an early age increase the risk of an underlying hereditary
cause.
o Jewish and/or African ancestry;
o A history of a known BRCA1 or BRCA2 mutation;
o A BRCA1 or BRCA2 mutation found in tumor tissue (prostate or other).
· If you are concerned about your personal risk of prostate (or other) cancer, speak to a certified genetic counselor. If there is not a genetic counselor near you, you can speak to one by phone or telehealth. That genetic counselor can help assess your risk and determine if you are a candidate for genetic testing.
Dr. Collins helped bring us the core genetics knowledge that is driving precision medicine forward, to advance medical care. He has now shared his personal story to help others receive the same level of medical treatment he has accessed. Indeed, there is great hope for people diagnosed with prostate cancer today. Thank Dr. Collins by taking full advantage of this knowledge, researching your family history, and speaking to a certified genetic counselor about whether you and/or family members qualify for genetic testing.
