BREAKING News: Top doc Francis Collins, former NIH director, shares his advanced PCa journey
Rockin' the Free World with a message of hope. But ...
(Francis Collins, MD, from AS to radical prostatectomy.)
By Howard Wolinsky
Prostate cancer doesn’t have any favorites. Rich man, poor man, top scientist, villain, everyman—all of us are at risk for prostate cancer.
Here we come to the story of noted cancer and genetics researcher, Francis Collins, MD, PhD, former National Institutes of Health director from 2009 to 2021 and National Human Genome Research Institute at NIH from 1993 to 2008.
He has come forward with his advanced prostate cancer story in an essay in the Washington Post headlined: “Why I’m going public with my prostate cancer diagnosis/I served medical research. Now it’s serving me. And I don’t want to waste time.”
Collins is doing what other high-profile figures—scientists, celebs, generals, athletes, and business leaders—should do to inform the public about a disease to reduce stigma, increase awareness and education, and, where possible, encourage screening of diseases like PCa that can be detected and treated early.
I believe his story will encourage more men to undergo prostate cancer screening and save lives.
But frankly, I wish he had gone public back when he was first diagnosed with low-grade prostate cancer five years ago and embarked on Active Surveillance. That, too, would have had a major impact. I don’t know why high-profile men don’t often share their AS journeys, whatever the long-term outcome.
Still, Collins is coming out now with a message of hope for prostate cancer. Better late than never.
“Over my 40 years as a physician-scientist, I’ve had the privilege of advising many patients facing serious medical diagnoses. I’ve seen them go through the excruciating experience of waiting for the results of a critical blood test, biopsy or scan that could dramatically affect their future hopes and dreams,” wrote Collins, who is well-known for his Christian faith and his guitar licks in a rock band including other scientists known as ARRA (Affordable Rock ‘n’ Roll Act),” said Collins, who turns 74 on Sunday.
(Collins, right, and his band, ARRA. NIH.)
“But this time, I was the one lying in the PET scanner as it searched for possible evidence of spread of my aggressive prostate cancer. I spent those 30 minutes in quiet prayer. If that cancer had already spread to my lymph nodes, bones, lungs, or brain, it could still be treated — but it would no longer be curable.”
He said he now wants to help men feel comfortable speaking about prostate cancer.
(Note to Dr. Collins: You might benefit from joining one of the support groups at AnCan to comfort and educate others and seek comfort from them in dealing with this disease.)
“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, said Collins.
Five years ago, Collins saw that his prostate-cancer antigen (PSA) was rising and volunteered for a clinical trial at the National Institutes of Health, where he had been the director.
Initially, he went on Active Surveillance to monitor his slow-growing cancer with targeted biopsies. He, like many of the readers of TheActiveSurvellor.com, was among the 40% of men diagnosed with prostate cancer with low-grade prostate cancer.
At first, there wasn’t much to worry about — targeted biopsies identified a slow-growing grade of prostate cancer that doesn’t require treatment and can be tracked via regular checkups with AS.
He said 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 age 65 have low-grade prostate cancer, he said.
“Many of them never know it, and very few of them develop advanced disease,” noted Collins.
Many on AS may start worrying that their cancer will follow Collins’ path. So let’s emphasize what he said: Very few of those of us with low-grade prostate cancer will develop advanced disease.
Collins said about a month ago his PSA rose steeply to 22 ng/mL. Normal PSA for his age is about 5. He left AS.
An MRI scan showed his tumor had grown significantly and may have penetrated the prostate capsule. He scored 9 on the 10-point Gleason scale.
He doesn’t say what his previous Gleason scores were, whether they were Gleason 7 or Gleason 6. In any case, it seems like a huge jump in a short time.
A PET scan was ordered to determine if the cancer had spread beyond the prostate, carried high significance. “Would a cure still be possible, or would it be time to get my affairs in order? A few hours later, when my doctors showed me the scan results, I felt a rush of profound relief and gratitude. There was no detectable evidence of cancer outside of the primary tumor,” he wrote.
He plans a radical prostatectomy later in April, which he feels will cure his cancer.
Collins’ story is a cautionary tale supporting continued monitoring.
“My situation is far better than my father’s when he was diagnosed with prostate cancer four decades ago. He was about the same age that I am now, but it wasn’t possible back then to assess how advanced the cancer might be. He was treated with a hormonal therapy that might not have been necessary and had a significant negative impact on his quality of life,” said Collins, who leads a White House initiative to eliminate hepatitis C in the United States, while also continuing to pursue his research interests as a distinguished NIH investigator.
“If my cancer recurs, the DNA analysis that has been carried out on my tumor will guide the precise choice of therapies. As a researcher who had the privilege of leading the Human Genome Project, it is truly gratifying to see how these advances in genomics have transformed the diagnosis and treatment of cancer.”
Meanwhile, a couple of readers made some other interesting points:
--Could the Collins case undermine AS acceptance. A nationally known urologist wrote me: "Wow, Howard, Does this raise a lot of questions.The AS community will need to be ready for the concern re the top doc in the top hospital progressing from Gleason grade group one to five. — don’t want that happening to me!
Wonder about PSA schedule/follow up schedule etc-at any rate a black Swan event with regard to rapidity of prostate cancer progression.
We will know more soon enough."
-- Collins case "is hardly an endorsement of AS. Makes it sound that one can wind up with a PSA of 22 on Active Surveillance." But I'm told by a leading urologist: PSA can increase very quickly if an aggressive tumor/ rapidly dividing or high tumor volume/burden."
Developing.
A sharp-eyed reader caught an error which I corrected. Collins a PET scan showed NO detectable evidence of cancer outside of the primary tumor. I cprrected the story.