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Why former NIH Director Francis Collins went public with his cancer diagnosis

SCOTT DETROW, HOST:

Throughout the coronavirus pandemic, we heard from a lot of people on this show, people who helped us try to understand what was going on and how to keep ourselves safe and how to get through a really challenging time. One of those people was Dr. Francis Collins. At the time, he was the director of the National Institutes of Health. Well, we learned on Friday that Dr. Collins is going through his own health crisis right now. He's been diagnosed with an aggressive form of prostate cancer, and he wrote all about it in an article published at The Washington Post. Dr. Collins, welcome back to ALL THINGS CONSIDERED.

FRANCIS COLLINS: Thanks, Scott. Nice to be with you.

DETROW: I just want to start off - I was really sorry to hear about this diagnosis. How are you doing?

COLLINS: I'm doing OK. Not exactly what I would have hoped to be experiencing right now, but I'm feeling pretty fortunate that, thanks to a lot of surveillance and early detection, I'm in a good position with the surgery that's now coming up soon to expect that this cancer can be cured. And that is a lot different than if I hadn't had all of this attention to make sure that we were watching this closely.

DETROW: What was your first response to the news that not only did you have cancer, but a pretty serious form of it?

COLLINS: It's one of those moments that I guess we all have once in a while, where the words come at you and you realize my life is now different than it was five seconds ago.

DETROW: Yeah.

COLLINS: When they said that this cancer - having been previously a very slow-growing, not-much-to-see-here kind of version - now in the latest biopsies had switched into high gear, something called a Gleason 9 - and it only goes to 10 on that scale - I knew that it was going to be time for action - serious action, and everything that I had maybe planned for the coming weeks, months and years was going to be affected.

DETROW: You mentioned a surgery. Can you tell us about how you're treating this?

COLLINS: So because the cancer does seem to be completely still contained within the prostate, after much searching to be sure of that, then the best way to avoid a downstream outcome, which I really would like to avoid - where the cancer spreads elsewhere, like to bones or to lymph nodes or to liver, lungs or brain - is to actually get the prostate removed. If you want to use an analogy, if the horse is the cancer and the barn is the prostate, we're not just going to get rid of the horse, we're going to get rid of the barn, too, because...

DETROW: Yeah.

COLLINS: ...We're just not quite sure how big that horse is. So the surgery is what's called a radical prostatectomy. It's done using a robot as well as a surgeon to try to limit the amount of recovery time, but also to be very precise in terms of how one does this, trying not to injure the other structures nearby, like the nerves and the vessels that can be kind of important.

DETROW: Are you worried about the treatment at all? I mean, this is to be blunt, surgery in a pretty intimate part of your body. And I think more broadly with cancer, a lot of people worry about the treatment. How - my dad's around your age. He's battling cancer right now. The treatment's working, but I see how much it takes out of him.

COLLINS: No, Scott, you're quite right, and I am worried about that. The surgery has gotten a lot better, but there's still plenty of opportunities for some men, and maybe that will be me, to end up with incontinence or with impotence because this is, as you say, a rather sensitive part of the male anatomy. And as hard as the surgeons try to try to take out the prostate and the cancer, there's a lot of other things nearby that can be temporarily or sometimes even permanently affected. And one has to have a realistic expectation walking into this that that could happen.

DETROW: Yeah. What are you hoping to gain by being so public about your diagnosis?

COLLINS: You know, maybe it feels like it would be a good thing to have more of a discussion about two things. One is doing this kind of regular early detection for cancers of all sorts - not just prostate cancer, but breast cancer, colon cancer. We fell way behind on a lot of those screens during COVID, for obvious reasons. People just weren't able to necessarily go in and have them done. We need to kick back in there because this is how you detect cancer early and save lives from lots of different areas of the body. So that was one reason.

The other is prostate cancer is particularly one of those that makes men uncomfortable, and I get that. And talking about it openly has not always been easy. And we need to get over that. And particularly men who have reached the point of age 50 or so, really need to think about what they can do to take care of themselves with the kind of screening that I had. I honestly think if I hadn't been in this circumstance of detecting something five years ago that said, ooh, there's something happening, following it closely with what we call active surveillance, and then discovering rather quickly the cancer had taken a bad turn, I probably wouldn't have known about this for several more years, at which point it might have presented by metastatic disease, which could not then be cured. So there's a message here. This kind of surveillance - even though a lot of people put it off, this can be lifesaving. And if there's some little part of my story that gets somebody interested in doing that for themselves, then it's worth being out there in the public.

DETROW: I imagine you've had health problems before over the course of your life, but probably nothing this serious. I'm wondering, being in this position, being on the other side of the conversation with a medical professional, have you learned something about medicine that maybe you didn't realize when you were the expert, when you were the person walking somebody through their options, as opposed to being the person listening to what your options are?

COLLINS: Oh yeah. It's one thing to be imagining what somebody is experiencing as you're giving them news that might be really serious and maybe even life-threatening. It's another to be the person in that spot. As many times as I have thought about what that feels like to be given a diagnosis of cancer, it's just a little different when it is coming at you. And I realize I had some of those same difficulties at first about being able to absorb this and listen carefully and get my head around exactly what was being said and what the consequences would be. So yeah, I think I will - when I next have the chance to be involved in this kind of circumstance as a physician, I'll have a different perspective.

DETROW: You know, you mentioned a couple times in the article where you talked about this news - you mentioned gratitude. Can you tell me what exactly you're grateful for?

COLLINS: I'm grateful that I had the opportunity to take part in this kind of early detection, which should be now available to everybody but hasn't broadly been accomplished in a lot of instances. And we have health inequities in our country that contribute to that. Without that access, I would not be in the place of being able to anticipate that this disease can be cured. I'm grateful to have the expertise of people at the NIH. I'm part of a clinical trial there, and therefore I'm hoping that whatever is learned about me can be widely shared and can teach people about other ways to deal with this disease.

I'm grateful with all the people that are around me who have been so supportive. Scott, I can't tell you that when this came out publicly, I just had this deluge of information and outreach from people, some of whom I haven't been around for a while, people who I have had wonderful, friendly relationships with. But just in the last day or so, all of these people that I considered friends have somehow crossed a line in being very comfortable saying, Francis, I love you. The word love has just come forward in a dramatically positive way. Maybe that's what it takes - is for something like this to get people to say the word. That's pretty touching. That's pretty amazing. I have...

DETROW: Well...

COLLINS: (Laughter) My heart is full of gratitude for that.

DETROW: That's a nice feeling. But let me actually - let me ask about that because, at the same time, I know that it's also a widespread feeling of when you hear that somebody, you know, has gotten a really serious diagnosis or something has really taken a bad turn with their health, sometimes people feel like, gosh, I don't even know what to say. I want to reach out, but I don't know what to say. You're being reached out to right now. What would you tell people who kind of wrestle with that?

COLLINS: Oh, I think what some of the people are reaching out to me with is a great example - to say, you know, I'm really supportive of you. I know you're going through a tough time. I just want you to know I love you. That was just astounding. That's a whole lot better than my thoughts and prayers are with you, which was sort of the old way of saying it. These are very genuine statements of affection that I have very much cherished.

DETROW: Speaking of praying, though, I did want to ask about how you ended your essay. I'm going to read a quote from the end of it. You write...

(Reading) A little over a year ago, when I was praying for a dying friend, I had the experience of receiving a clear and unmistakable message. This has almost never happened to me. It was just this - don't waste your time. You may not have much left.

You are getting treated. You are moving forward. You feel like you have a clear path to beat this cancer, to keep going. But tell me how you're thinking about that sentiment now, what you want to do with the time you've got left.

COLLINS: Well, getting a cancer diagnosis does focus your mind on that a bit, doesn't it?

DETROW: Yeah.

COLLINS: I am a person of faith, and even before this diagnosis, I had that particular revelation that you just read about that I don't know - quite know how to interpret. And in fact, of course, that's true of all of us. We don't know how much time we have left, and we shouldn't be wasting that time. But it feels more acutely true right now that if there are things I am doing that are not necessarily contributing much to bettering the people around me or the world, maybe those things ought to be deprioritized. And I had to really think about, how do I want to focus my time on giving the most I can to my family, to my friends, to my profession, to my faith, so that I won't look back and say, oh, I really kind of wasted that? That feels like a moment to pay attention to, especially when you have a significant cancer that's just landed in the middle of your life course.

DETROW: Yeah. That's Dr. Francis Collins. He was the director of the National Institutes of Health from 2009 to 2021. Thanks for talking to us, and we'll be thinking about you as you go through with this.

COLLINS: Well, thanks a lot, Scott. It's a pleasure to talk with you today. Transcript provided by NPR, Copyright NPR.

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