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Francis Collins has prostate cancer — and he wants people to talk about it


Despite advances in treatment, prostate cancer still has the second-highest cancer mortality rate among men. Writing for the Washington Post, former NIH Director Francis Collins publicly shares his own prostate cancer diagnosis "to lift the veil and share lifesaving information" about the disease.

Collins' prostate cancer diagnosis

Prostate cancer is the most diagnosed cancer among men in the United States. Around 40% of men over the age of 65 have low-grade prostate cancer, but many of them are not aware of it, as few will develop advanced disease.

Five years ago, Collins' doctor noted that his levels of prostate-specific antigen (PSA) were slowly rising. Soon after, he enrolled in a clinical trial at NIH "to contribute to knowledge and receive expert care."

At first, targeted biopsies only found a slow-growing grade of prostate cancer, which did not require treatment and could be tracked by regular checkups. However, Collins' diagnosis changed around a month ago when his PSA levels sharply increased to 22. Collins is 73, and a normal PSA level for his age is less than five.  

An MRI scan showed that his tumor had grown significantly, and new biopsies showed that the tumor had transformed into a much more aggressive cancer. A PET scan was then ordered to determine if the cancer had spread beyond the prostate, which could significantly impact Collins' chances of survival.

According to Collins, he felt "a rush of profound relief and gratitude" after the PET scan showed no detectable evidence of cancer, aside from the original tumor. Later this month, Collins will undergo a radical prostatectomy, a procedure that will remove his entire prostate gland.

Although the procedure isn't a guaranteed success, Collins' doctors believe there's a high likelihood that it will cure his cancer.

Advancements have improved treatment — but obstacles remain

Over the last few decades, treatments for prostate cancer have advanced significantly. Thanks to research from both NIH and the private sector, the disease can now be treated "with individualized precision and improved outcomes," Collins writes.

"My situation is far better than my father's when he was diagnosed with prostate cancer four decades ago," Collins writes. "… He was treated with a hormonal therapy that might not have been necessary and had a significant negative impact on his quality of life."

Now, high-resolution MRI scans can precisely identify the location of a tumor, and sophisticated robots are used to assist surgeons, leading to less invasive surgical techniques. DNA analyses of tumors can also help patients find more precise and effective treatments.

"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," Collins says.

Although the five-year relative survival rate for prostate cancer is 97%, it is still the second-most common cancer killer among men. The survival rate also decreases to 34% if the cancer spreads to more distant areas of the body.

According to Collins, a "lack of information and confusion about the best approach to prostate cancer screening have impeded progress."

For example, the U.S. Preventive Services Task Force recommends that all men ages 55 to 69 discuss PSA screening with their primary care physician, but says PSA screenings should not be started after the age of 70. In comparison, the American Urological Association suggests that men who are at a higher risk of prostate cancer, including Black men and those with a family history, should have PSA screenings at earlier ages.

There are also health inequities when it comes to screenings, with Collins noting that "image-guided biopsies are not available everywhere and to everyone."

Overall, Collins says he wants "as much information as possible to be learned from my case, to help others in the future."

"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," Collins writes. "I hope it helps someone. I don't want to waste time." (Collins, Washington Post, 4/12)


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