Dr. Francis Collins, former director of NIH shares the prostate cancer journey.

Dr. Francis Collins revealed he has prostate cancer, and that it has recently transformed into a larger, more aggressive cancer. Why did he share this personal news? Because he wants to share life-saving information about it prostate cancerthe most common form of cancer and the second leading cause of cancer death among men in the United States.

Dr. Collins served as director of the National Institutes of Health from 2009 to 2021. But genetics nerds like me remember him as director of the National Human Genome Research Institute from 1993 to 2008, during which time the the human genome was sequenced. This achievement 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 from genomic technologies.

There is an opportunity for some men who discover their prostate cancer at an early stage to consider ‘active surveillance’ rather than more radical, traditional approaches. In some men with a hereditary form of prostate cancer, such as men 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 and the risk of prostate cancer?

· Prostate cancer is common: 1 in 8 men will develop the disease during 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, anyone with a prostate gland should discuss the risk of prostate cancer and the pros and cons of prostate screening with their doctor, as well as the recommended age to consider screening.

· Men with a family history of the disease, and African American men, should consider screening at age 45. If you have a family history of prostate cancer, with a close relative diagnosed before age 55, consider screening 10 years earlier than the first diagnosis of prostate cancer in your family. If you BRCA2 mutation, screening should begin at age 40.

· Everyone should investigate and document family history of cancer. Share this information with your family members and keep a copy of this information with your other vital records.

· Your family history of cancer should include this both sides of your family, the age at which each cancer is diagnosed, and not just prostate cancer, but any type of cancer.

In addition to having family members with prostate cancer, other things in your family history can increase your risk for prostate cancer, including:

o A family history of breast, ovarian, fallopian tube and/or pancreatic cancer in close relatives;

§ Cancer diagnosed at a young age increases the risk of an underlying hereditary condition

cause.

o Jewish and/or African descent;

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 cancer (or other cancer), please contact: certified genetic counselor. If there is no genetic counselor in your area, you can speak to one by phone or via telehealth. That genetic counselor can help you assess your risk and determine whether you are eligible for genetic testing.

Dr. Collins has helped us gain the core knowledge of genetics that will advance precision medicine and advance medical care. He has now shared his personal story to help others get the same level of medical treatment he did. There is indeed 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 with a certified geneticist about whether you and/or family members are candidates for genetic testing.