“Your entire practice, cancer has been associated with an aging population, and then you have a young, beautiful, healthy-looking woman like Alisa Secaida come into your office, it’s not a surprise that the doctor, their knee-jerk reaction would be like, ‘Maybe just slow down,’” said The Cancer Letter’s Claire Marie Porter.
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In this episode of In the Headlines, Paul Goldberg, editor and publisher of The Cancer Letter, and Claire, reporter, talk about the increasing incidence rates of early-onset cancer, particularly in young women. Claire’s story centered on a 35 year old fit and otherwise healthy mother of two who was diagnosed with stage 4 lung cancer.
Secaida’s story is not unique, Claire said. ACS data shows that, this just came out recently, earlier this year, that women are now being diagnosed almost twice as much with cancer as men, and that’s a reversal of prior trends.
This rise in early-onset cancers is a paradigm shift that oncology isn’t quite prepared for, Claire said.
“There’s not really a bad guy here. It’s just that things are happening. And not only our guidelines and screenings practices, standards of care is not caught up, but I think biases are not caught up either,” Claire said. “I don’t think that there’s nothing malicious happening here, which is what makes it even more nuanced in such a difficult gray area for young people who are told to advocate for themselves, because sometimes that falls flat.”
Stories mentioned in this podcast include:
- Young women are now diagnosed with cancer at twice the rate of young men. The face of cancer is changing at a time when research is plagued by existential threats
- Reimagining cancer care for a new generation of patients
- Loss of Y chromosome “cripples” immune cells, University of Arizona researcher finds. Cells with LOY may induce LOY in otherwise healthy cells—a finding that could explain variability in CAR T-cell therapy response
- Bridging the gaps in cancer care for Hispanics: Striving for equity and fairness in scientific advancements
- Harmon Eyre, former ACS chief medical and scientific officer, dies at 84
- George Sigounas named the first-ever chief science advisor at NCI
- Success rates for RPGs at NCI would plummet from 13.4% to 8.3% if Trump’s FY2026 budget is enacted
- FDA booth stood empty at 2025 ASCO annual meeting
- ALT GOV: The HHS “resistance” on social media
This episode was transcribed using transcription services. It has been reviewed by our editorial staff, but the transcript may be imperfect.
The following is a transcript of this week’s In the Headlines, a weekly series on The Cancer Letter podcast:
Jacquelyn Cobb: This week on The Cancer Letter Podcast…
Claire Marie Porter: The patient that I spoke with is receiving treatment at City of Hope for stage four lung cancer. Alisa Secaida, she’s a mother of two from Southern California, and she fits into the profile of this shifting demographic of young, fit patient that you would never suspect to be sick.
She said repeatedly during her story, as she was seeking help and trying to find a doctor to take her symptoms seriously, that she just didn’t fit the profile. She just didn’t look sick enough to be taken seriously. And she doesn’t fit the profile for screening guidelines for lung cancer. She’s a never-smoker, and she’s young.
Paul Goldberg: You’re listening to The Cancer Letter podcast. The Cancer Letter is a weekly independent magazine covering oncology since 1973. I’m your host, Paul Goldberg, editor and publisher of The Cancer Letter.
Jacquelyn Cobb: And I’m your host, Jacquelyn Cobb, associate editor of The Cancer Letter. We’ll be bringing you the latest stories, groundbreaking research, and critical conversations shaping oncology.
Paul Goldberg: So let’s get going.
Claire Marie Porter: Hi, Paul.
Paul Goldberg: Hi, Claire, how are you?
Claire Marie Porter: I’m good, I feel like it’s been a while since I’ve been on the podcast. Try not to take that personally.
Paul Goldberg: Oh, please don’t.
Claire Marie Porter: Just kidding.
Paul Goldberg: Please don’t. You can take my spot any week.
Claire Marie Porter: No, it’s fine. It doesn’t come as naturally to me as it does you and Jacquelyn, so it’s fine.
Paul Goldberg: Wow, please. It’s not a competition.
Claire Marie Porter: No, I know, it’s not. How was your weekend?
Paul Goldberg: It was great. Actually, I did nothing for mankind, nothing.
Claire Marie Porter: Nice.
Paul Goldberg: I didn’t even go biking, just aggressively nothing. It’s a stare into space weekend.
Claire Marie Porter: Yeah, I feel like you need those weekends once in a while, just a, I don’t know, no expectation, nowhere to be. I could have used one of those.
Paul Goldberg: Yeah, I had expectations, I had places to be, but I just to had to space.
Claire Marie Porter: Got it.
Paul Goldberg: It’s great.
Claire Marie Porter: Got it. Well, my kids are officially off school, so our house is completely trashed, and just adjusting to that new reality for the next couple of months, which is harrowing, but it’ll be fun. It’ll be fun.
Paul Goldberg: Well, it’s going to be an interesting week. You get to come to Washington for an awards thing at Society for Professional Journalists.
Claire Marie Porter: Yes. It’s my first, I think, award ceremony, so I’m excited. It’ll be fun.
Paul Goldberg: Yeah. We’ll be at the National Press Club.
Claire Marie Porter: Yes, indeed.
Paul Goldberg: And that’s just a question of having enough cash to buy drinks for everybody who wants them. So I’ll take care of that.
Claire Marie Porter: Very nice.
Paul Goldberg: So I’ll come in with a wad of cash.
Claire Marie Porter: Okay, sounds good.
Paul Goldberg: It’s going to be great.
Claire Marie Porter: I’ll be so excited. I have a nice bottle of wine to bring you and Susan as well.
Paul Goldberg: Oh, that’ll be fabulous.
Claire Marie Porter: Well, I’m going to play Jacquelyn this week and walk us through the headlines. I will just briefly mention story one since that’s what we plan to talk about in the body of the podcast, if you will. Story one was on new data that shows that the face of cancer is changing. It reflects on a young woman’s diagnosis with a cancer that she literally wasn’t eligible to be screened for due to her age and health. So we’ll talk more about that.
Story two was written by City of Hope’s Hope Rugo on this same topic. She’s also quoted in story one on the shifting cancer burden. “Cancer rates in women under 50 are now 82% higher than in men of the same age, which is a statistic that should fundamentally reshape how we approach oncological care,” she says.
Jacquelyn Cobb, you all know, our associate editor, wrote a science piece about University of Arizona researcher Dan Theodorescu’s findings that the loss of Y chromosome cripples immune cells.
We had a guest editorial by Mecker G. Möller from University of Chicago Medicine Comprehensive Cancer Center on equity and fairness in cancer care and advancement for the Hispanic population.
And lastly, we had an obituary written by Dr. Otis Brawley commemorating the life of Harmon Eyre, a former American Cancer Society chief medical and scientific officer who died at the end of May at age 84.
I don’t know if Jacquelyn usually introduces the headlines in cancer policy, but we had a juicy week, so I thought I would just run through those really quickly. George Sigounas was named the first ever chief science advisor at NCI that you wrote, Paul. You also wrote about how success rates for RPGs at NCI would plummet if Trump’s FY26 budget is enacted. Jacquelyn wrote about the empty FDA booth at ASCO this year. There’s an eerie photo of that included in the story.
I wrote a piece about the social media resistance presence on BlueSky. CDC, NIH, NCI and others have started these alt government accounts to promote truth and combat propaganda. Jacquelyn wrote about how nearly 11 million people will become insured if the reconciliation bill passes as is. And lastly, Jacquelyn reported on FDA Commissioner Marty Makary’s roundtable discussion on cell and gene therapy, where he questioned the construct of levels of evidence as artificial and dogmatic, saying that n-of-1 stories can drive regulatory decisions. So you’ll want to check that out.
There’s like six stories in our cancer policy this week. So it’s a big one.
Anything to add? That was a lot.
Paul Goldberg: No.
Claire Marie Porter: Okay.
Paul Goldberg: No, this was a comprehensive list.
Claire Marie Porter: Yes, it was.
Paul Goldberg: But maybe we should, just before we get to story one, which you masterfully reported and wrote, let’s just spend five seconds on the lead to the section about cancer policy, which is chief science advisor to the NCI director. I am hearing good things about this guy, but the thing that is difficult to get through my thick skull is why that position is necessary, and what’s the game here? So I don’t get it. Doesn’t mean it’s wrong, I just don’t get it.
There’s never been one. There’s been a board of scientific advisors. Why do you need a chief science advisor to the NCI director, who by the way, is no chopped liver? This is a scientist who co-developed the HPV vaccine, so what he needs with that, and it’s also politically appointed position. Maybe, and I wouldn’t put this in writing, but we might as well discuss it here because it’s a looser standard, I think, what do you think is happening here? I don’t get it.
Claire Marie Porter: Are you asking me?
Paul Goldberg: Yeah, why not? Just take a swipe by that.
Claire Marie Porter: Oh, I, honestly, was so deep in my story last week, I wasn’t really paying close attention. I know we talked a bit about this guy, but in terms of my own personal suspicions, I wouldn’t begin to try to make any claims. But I think you had an anonymous quote in the story, that kind of summed it up.
Paul Goldberg: Yeah, it did. Yeah, it did. Basically, the National Cancer Act requires the NCI director to be named by the president. This is not what’s happening here. So Doug Lowy, as great as he is as acting and does not have the same political clout as a politically appointed NCI director would, but this way, they basically keep the NCI under this level of management, but insert the political appointee to advise.
Claire Marie Porter: I see. So are there implications that you can draw from that, or that we’re supposed to draw?
Paul Goldberg: Well, NCI right now is without an advisory board that’s used for thirty-some years. NCI right now is under control of NIH. NCI right now is without political clout. And I don’t know what’s going to be happening with NCAB, I can’t wait. They can’t get rid of NCAB because it’s in the National Cancer Act, they need an appointment with Congress for that. So the president is proposing a 40% cut, almost, for NIH. And that’s quite a bit. The success rates for R01’s are going to go down to about eight point something. 8.2, I believe. There is also a question of what’s going to happen with the money that wasn’t spent this year? Are they going to just forgo it, get rid of it? I don’t know. And of course, there’s uncertainty about the big beautiful bill, and then there’s also uncertainty about the one that’s coming up right after it, which is the FY26. So doing this without a permanent NCI director is actually probably easier now if that’s your goal. I don’t know why anybody would have this goal, but they have this goal, it seems.
Claire Marie Porter: Yeah. Yeah. I feel like everything that’s hanging in the balance adds weight to story one, which is about one patient who represents many patients. And we don’t really know what the future holds right now in terms of funding cancer research, and at a time when there’s these alarming research statistics coming out showing that we have this shifting cancer burden.
Paul Goldberg: That’s a very appropriate segue to the point—
Claire Marie Porter: Yeah, not to segue my story…
Paul Goldberg: Well, it’s a seamless segue to your story, and I’m mixing metaphors.
Claire Marie Porter: Please, mix away.
Paul Goldberg: Oh, no, but really, patients have not been heard from yet. And our story, i.e., your story, which is on page one, puts a patient on the cover. And we should talk about it, go ahead.
Claire Marie Porter: Yeah, yeah. Yeah, it’s a really weighty story, and I was really honored and privileged. I always am when a patient—they don’t have to talk to us, don’t have to talk to journalists. And when they do and they share their story and they’re honest and transparent, it just means a lot to me. And it’s very moving. Anyway, this is a demographic, 35 year old women, young women who are being diagnosed with cancer at much, much higher rates than they were previously.
So it feels very personal as a mother as well. So the patient that I spoke with is receiving treatment at City of Hope for stage four lung cancer. Alisa Secaida, she’s a mother of two from Southern California. And she fits into the profile of this shifting demographic of young, fit patient that you would never suspect to be sick. She said repeatedly during her story, as she was seeking help and trying to find a doctor to take her symptoms seriously, that she just didn’t fit the profile. She just didn’t look sick enough to be taken seriously, and she doesn’t fit the profile for screening guidelines for lung cancer. She’s a never-smoker, and she’s young.
And I think a sentiment that she continually reiterated was that her story is not unique, that this is a rising phenomenon. And when she found out about her cancer diagnosis, she turned to social media, as a lot of us often do, to find groups and a community or a sense of solidarity with people who fit the same profile as us. And she found a lot of them. And so yeah, it’s a scary moment. This ACS data shows that, this just came out recently, earlier this year, that women are now being diagnosed almost twice as much with cancer as men, and that’s a reversal of prior trends. So I’m just jumping into the story and rambling a bit.
Paul Goldberg: Let me actually interrupt you for a second, it’s not an aberration, it’s not some artifact that you’re seeing, there’s actually data to show that this is happening. And by this, I mean people under 50 getting diagnosed increasingly with cancers, and women are almost twice the risk of men in that age group. That’s what, as an editor, I saw in your story.
Claire Marie Porter: Yeah, yeah.
Paul Goldberg: That’s correct?
Claire Marie Porter: That is correct. That is correct, yeah.
Paul Goldberg: And ASCO had a session on this chaired by Kim Rathmell.
Claire Marie Porter: Yes.
Paul Goldberg: But anyway, go ahead. I’m sorry.
Claire Marie Porter: Yeah, no, no, that was a big feature of the ASCO panel was on the rising incidences of colorectal cancer, which have been in a lot of headlines recently. But 10 common cancers are on the rise, not just CRC. I believe that colorectal cancer is an exemplary cancer for studying this problem according to epidemiologists. So that’s why a lot of research has been focusing on CRC. But for someone like Alisa, lung cancer fits into this same category of cancers that used to disproportionately affect, and they were cancers of an aging population, and they were not associated with younger people. So there’s this paradigm shift happening where a young healthy looking person walks into a doctor’s office, and they’re told they have long COVID, or they’re working too hard, or maybe to get some support with child care, these types of things, these stories seem to be recurring.
So yeah, with Secaida, she couldn’t get the treatment that she desperately needed, and as a result, has now undergone the full gamut of cancer treatments, and is living now with an incurable disease, and will be on some type of treatment for the rest of her life. And one of, I think, the most powerful, but also disturbing quotes that she gave me was that it’s not lost on her, that had she been taken seriously earlier, I think her symptoms started showing up a year before she was diagnosed with lung cancer, that she might’ve been able to avoid a lot of those treatments.
Paul Goldberg: What would be the lesson you’re taking from this as an observer and not just a reporter?
Claire Marie Porter: Yeah. That’s a good question. The lesson? Not to make this about me, but I have a rare disease that affects me when I’m pregnant. So I’ve been on the side of having something weird that’s outside the standard of care, being a young woman that’s otherwise healthy, and needing to advocate for yourself when you know something’s wrong, which is way easier said than done, I think. There’s this moment in the story with Alisa where she had paid for her own CAT scan right out of pocket. She had found this place in Orange County, California that would give her a CAT scan because she had been complaining about her symptoms, not complaining, she had been processing her symptoms with her girlfriends. And one of them, who worked for the LA fire department, was like, “You know you just get a Groupon and go get your own CT scan, you don’t have to wait for a doctor’s referral?” And she didn’t know she could do that.
So she did, paid $ 450 in cash, brought the results, which showed a mass and enlarged lymph nodes to her provider at the time, and was told that everybody in California has nodules, and just dismissed again. So she really fully needed to take this into her own hands. So the point of that was that she took the proof of what she thought was going on to her doctor, came home, was dismissed, and her husband actually went back and advocated for her. And she got an email with a referral to a pulmonologist that day. So it’s this idea of self-advocacy and you know your body better than anyone else. It’s a tricky place to live, I think, when you are a patient, especially a woman. So I think that’s my takeaway. When I attended the City of Hope webinar that presented this ACS data, a big piece of that was advocacy and learning how to advocate for yourself, and teaching doctors and providers to advocate for their patients. But I think that’s maybe a paradigm shift that oncology isn’t quite prepared for, young people. I’m not sure. Go ahead.
Paul Goldberg: Yeah, no, it’s just so complicated, because on the one hand, reading this, with 2020 hindsight, you have to say, “Oh, that doctor wasn’t listening to the patient.” On the other hand, looking at it from the point of view of evidence-based medicine, those Groupon self-referrals where $450 buys you a CT is an abomination. It’s exactly where the US healthcare system is as screwed up as it is, and why we are getting the worst possible care at the highest possible price. So on the one hand, found myself sympathizing with the patient. On the other hand, I was also sympathizing with the physician who said, “What the hell is this?”
Claire Marie Porter: Yeah, yeah, yeah.
Paul Goldberg: So that was where I was finding myself.
Claire Marie Porter: No, I think the tricky part is that many doctors would’ve done the same thing. There’s not really a bad guy here. It’s just that things are happening. And not only our guidelines and screenings practices, standards of care is not caught up, but I think biases are not caught up either. Your entire practice, cancer has been associated with an aging population, and then you have a young, beautiful, healthy-looking woman like Alisa Secaida come into your office, it’s not a surprise that the doctor, their knee-jerk reaction would be like, “Maybe just slow down.” So I don’t think that there’s nothing malicious happening here, which is what makes it even more nuanced in such a difficult gray area for young people who are told to advocate for themselves, because sometimes that falls flat.
Paul Goldberg: I’m just thinking out loud, there is this effort right now underway to make it easier for patients to speak about what’s happening, because it affects them more than it affects cancer centers. Cancer centers are basically at the service of patients. Patients have the most at stake here. If they are losing insurance, losing access to clinical trials, losing access to care in every way, gosh, isn’t it time for them to be heard? This is a democracy. So there is an organization that’s starting, we haven’t done a story on it, but probably will very quickly, it’s called Patient Action for Cancer Research. And I can’t wait to tell everyone about it, what are your thoughts about what patients can do right now.
Claire Marie Porter: Yeah. Obviously we’re journalists, we know that storytelling has a lot of power. And my one thought would just be that the more stories that we hear that in this case for my reporting, Alisa Secaida is one of many, and she’s, in that way, the voice of people who have experienced a similar type of successive dismissals followed by an aggressive cancer diagnosis that possibly could have been avoided. And I do feel like there’s power in numbers when it comes to those types of stories. So I think hearing these things over and over, if these rising cancer incidences are trending in the way that this data suggests, and I should mention that the earliest data that we have is from 2021, that’s the ACS data, so who knows what’s happened in the past couple of years here. But if things are trending in this direction, we will hear about it.
And I think these young people need to have a platform, I think, to share those stories, whether it’s us, a magazine, or an advocacy network like the one that you’re describing. But yeah, I think it would be amazing to hear from more patients, and I hope to be a safe person for that to happen. I love talking to patients, but I know that can be intimidating for a lot of people, who they’re maybe feeling more vulnerable or afraid of backlash or something like that. It’s a weird time to be a journalist. It’s a good time, it’s a weird time. Media can be intimidating. So those are my thoughts.
Paul Goldberg: Yeah, that’s why it was so important to get the story on page one. And we are talking, I think, about not only younger people with cancer, but also pediatric patients, but then also just everybody. And I think they need to be heard in a systematic way. And to do that, it’s actually much simpler than it appears. It’s actually not a very difficult thing to do given the technology that’s available, and given the types of people who are now getting involved in this. And there will be more in The Cancer Letter, so we’ll continue with the story.
Claire Marie Porter: Yeah.
Paul Goldberg: Thank you.
Claire Marie Porter: Yeah, sounds good. Thanks, Paul.
Paul Goldberg: All right. Thank you, Claire. Talk to you soon.
Claire Marie Porter: Talk to you soon.
Jacquelyn Cobb: Thank you for joining us on The Cancer Letter Podcast, where we explore the stories shaping the future of oncology. For more in-depth reporting and analysis, visit us at cancerletter.com. With over 200 site license subscriptions, you may already have access through your workplace. If you found this episode valuable, don’t forget to subscribe, rate, and share. Together, we’ll keep the conversation going.
Paul Goldberg: Until next time, stay informed, stay engaged, and thank you for listening.
