Up to 80% of adolescents and young adults with cancer are affected by reduced fertility after treatment—but only 50% received oncofertility counseling and preservation options prior to beginning treatment.
This episode is available on Spotify and Apple Podcasts.
In this episode of In the Headlines, Jacquelyn Cobb, associate editor of The Cancer Letter, and Claire Marie Porter, reporter, talk about how oncofertility, now a standard of care, is often overlooked. Claire’s story highlights the experiences of two young adult survivors with the same diagnosis—one who received oncofertility counseling and one who did not.
“Getting a cancer diagnosis when you’re a young person is very shocking. There’s so much to talk about. And when it comes to osteosarcoma, usually the treatment has to begin right away,” Claire said. “So, if that conversation doesn’t happen within a couple of days, there’s not much you can do”
In the U.S., cancer affects 89,500 adolescents and young adult patients, often called AYA patients, annually.
An estimated 70–75% of AYA cancer survivors are interested in parenthood, but only half of them report getting oncofertility counseling and preservation options prior to their cancer treatments, according to results of a cross-sectional study: Patient-Reported Discussions on Fertility Preservation Before Early-Onset Cancer Treatment, published in JAMA Network Open.
Other stories mentioned in this podcast include:
- Banished from the institute he founded, separated from his lab materials, Tom Curran sues Children’s Mercy—Whistleblower lawsuit alleges wrongful firing
- Tom Sellers steps down as director of OHSU Knight, replaced by Lisa Coussens. Shivaani Kummar recently named interim CEO
- Guest editorial by InformedDNA’s Ashely Cannon: Genetic counseling can improve genetic screening and accelerate clinical trial success
- Thomas B. Tomasi Jr., Roswell Park president and CEO from 1986 to 1996, dies at 97
- Obituary by Jerome Yates: Tomasi revived basic and clinical research at Roswell Park
This episode was transcribed using AI 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: Getting a cancer diagnosis when you’re a young person is very shocking. There’s so much to talk about. And when it comes to osteosarcoma, usually the treatment has to begin right away. So, if that conversation doesn’t happen within a couple of days, there’s not much you can do. So she didn’t really talk about it, didn’t do anything to retrieve her eggs or preserve her fertility, and now is in complete remission at age 22. She just recently started exploring the idea of building a family, and found out, sadly, that it doesn’t seem likely.
Paul Goldberg: You are 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, Jacqueline 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.
Jacquelyn Cobb: Hi, Claire. How’s it going?
Claire Marie Porter: Hi. How was your weekend?
Jacquelyn Cobb: Oh my gosh. Very exciting. I have a niece, which is so exciting.
Claire Marie Porter: Oh, great!
Jacquelyn Cobb: The little baby girl was born. You can hear in my voice, I think, that I am gushing over this.
Claire Marie Porter: Sweet baby. Congratulations. It’s so thrilling and exciting. Yay!
Jacquelyn Cobb: Thank you. Yeah, I was telling you earlier this morning, I’ve never really interacted with a newborn or even a young baby before, so, wow. It is gonna be a wild journey and a lot of trips up to Portland and in my near future, so…
Claire Marie Porter: That’s so crazy to me. You don’t have any younger siblings?
Jacquelyn Cobb: I’m actually an only child, so my only way to be an aunt is through my boyfriend right now, so hopefully things can go in that direction. Yeah, I’m very excited.
Claire Marie Porter: That’s so great.
Jacquelyn Cobb: Yeah. Thank you. Okay, so I will take us through the headlines this week.
This week we had a story about Tom Curran suing Children’s Mercy Hospital for “wrongful termination.” And if Paul were here, that would probably be the one that we focused on for the podcast. It has all of the features of his favorite kind of story. It has a juicy lawsuit, it talks about funding, and most importantly, it has beautiful architecture as a key feature of the story. So he would definitely wanna talk about that. But as he is not here, me and Claire are gonna be talking about a different story.
I think it was our story three last week—Paul wrote a story about Tom Sellers stepping down as director of OHSU Knight Cancer Center, and Lisa Coussens stepping up as interim director.
We had a guest editorial by Ashley Cannon, clinical program manager at InformedDNA, about how genetic counseling can improve the clinical trial process. We also had two obituaries for Thomas B. Tomasi Jr., who was the president and CEO of Roswell Park for a decade. One obituary was written by Roswell Park, and the other was written by Tom’s mentee, Jerome Yates. Tomasi died at 97 years old.
Also, as a heads up to readers of The Cancer Letter, we have transformed our sort of standard weekly policy roundup story that has been, usually, the second story in our issue to an independent section. So, you can find that under our Cancer Policy section for anything Washington health policy, Trump, anything like that will be found there, as long as it’s sort of in brief.
But of course, we’ll be doing deeper dives and there’ll be more of a typical story as usual. But definitely be looking toward the back of the issue for your fix of Trump stuff, mostly.
We had a really incredible story on the cover this week, and that’s what we’re gonna dive into today, by Claire. It was a massive undertaking, so many things that were covered. I can’t wait to dive into sort of the “how” of how you got this done, Claire. But if you could first just walk us through generally what the story was for anybody who didn’t get a chance to read it.
Claire Marie Porter: Sure. Yeah. So, I mean, speaking of babies, this story’s been on my radar for a while. I’ve been wanting to write it. It’s about adolescent and young adult, or AYA, patients with cancer, who we recently found out, according to a JAMA study, that only half of them are having a conversation about fertility preservation, right? There’s no secret that most cancer treatments can negatively affect future fertility. So this fertility consultation is a really important and necessary part of cancer care before undergoing cancer treatment, but only one out of two patients are receiving it. So, that was the impetus for the story. That study came out a few months ago. But then just this past month, ASCO also updated their guideline on the standard of care for including this fertility conversation after cancer treatment as well, so during survivorship.
I love these kinds of stories. I got into journalism because of my reproductive health reporting essentially. My master’s thesis was on a pregnancy-related condition, so this area of health care is really fascinating to me. And there tend to be a lot of these kind of standards of care that are maybe really nuanced or require a really multidisciplinary approach. And so sometimes things fall through the cracks. And these types of stories are really intriguing to me because often there’s a very strong patient perspective, there’s a provider perspective, and then, no one’s a bad guy. It’s just something is being overlooked, and why is it being overlooked? And for a story like this, there are multiple reasons why that is happening. So it was really, really interesting to report and just really personal as well.
Jacquelyn Cobb: Yeah. Yeah. I’m torn between what I wanna ask you next, ’cause I want to go in two different directions, you know?
Claire Marie Porter: We can always circle back.
Jacquelyn Cobb: I think I’ll first ask, who are the characters in your story?
Because I think when you were sort of planning this story and telling us what you had and or who you had to talk to I was so excited by the narrative journalism you were committing by who you were speaking to. So, let’s start with the characters. And then I would love to hear, you know, what is actually happening with this standard of care?
Claire Marie Porter: Sure. So I found my two main characters, who are real-life friends, through this advocacy group, this nonprofit called MIB Agents, which was founded by Anne Graham. It is specifically for AYA patients with osteosarcoma, raising awareness about that which is a rare and aggressive bone cancer. So she connected me and Graham connected me with two different women who were willing to speak to me: one anonymously, and one on the record. So my main character is Sammy Ulloa, who’s a Southern Californian native. She was diagnosed with osteosarcoma five days before her 20th birthday after experiencing some pain in her right upper proximal tibia for about a year. She was a competitive runner and had been experiencing pain. And then the MRI confirmed that, and she learned that she was going to need to get her port placed within a couple of days and start chemotherapy within a week.
I believe she started chemotherapy right [around] or on her birthday. So, really, kind of a high-pressure situation. She does recall having a very brief conversation about her future fertility with her provider, but she describes it as being “kind of brushed over.” So, she was really overwhelmed. Her family was really overwhelmed. And this is kind of a story I have heard over and over. Getting a cancer diagnosis when you’re a young person is very shocking. There’s so much to talk about. And when it comes to osteosarcoma, usually the treatment has to begin right away. Yeah. So if that conversation doesn’t happen within a couple of days, it’s… you know, there’s not much you can do. So she didn’t really talk about it; didn’t do anything to retrieve her eggs or preserve her fertility, and is now in complete remission at age 22. And [she] just recently started exploring the idea of building a family, and found out sadly, that it doesn’t seem likely that she will be able to bear children in the future.
On the flip side, a friend of hers that I was connected with, who we call Sadie anonymously in the story, had a very different experience. Kind of a similar trajectory for the treatment but was given upfront with everything else this very comprehensive understanding of how this treatment could affect her future fertility. The options were laid out, she was supported. Her providers kind of facilitated the appointments that were necessary with the fertility clinic. And long story short, she ended up retrieving her eggs, and is so glad that she did. So kind of two competing stories, same diagnosis. One’s on the East Coast and one’s on the West Coast.
So, that’s how I found both of them, and I felt like using osteosarcoma was kind of the perfect representative for a narrative lead because it’s very symbolic in the sense that this conversation has to happen quickly. And so for providers to be able to have that conversation, they have to be equipped, and they also have to be able to guide it because a family that just received the news that their child, has this aggressive bone cancer is not going to be thinking about fertility, or they’re thinking about the now and survival. Yeah. So, that’s kind of the overview. That’s how I found these two women. What was your other question?
Jacquelyn Cobb: Yeah. My other question was what you sort of were leading up to: Why is this happening? hy are people falling through the cracks on this standard of care? Because it is standard of care, right?
Claire Marie Porter: Right. Right. Yeah. So, ASCO outlines the standard of care as being oncofertility counseling before, during, and after cancer treatment. I think what I learned was—and I talked mostly to Dr. Andy Livingston at MD Anderson about this piece—but AYA populations have been kind of systemically overlooked. NCI over the past 10 years designated them as an at-risk population. And Livingston’s perspective on that is that a lot of young adults, a lot of adolescents, are in a transitory period. So, maybe they’re applying for college, maybe they’re leaving home for the first time, maybe they’re in between insurance because of that.
A lot of things are up in the air. Maybe their healthcare is not at the top, the forefront of their mind. They’re not living at home anymore, something like that, and so as a result, their healthcare maybe falls through the cracks. And then this conversation, which is a very nuanced, tricky, awkward up until recently, kind of taboo conversation for both men and women, let alone the logistics of preserving fertility. Yeah. All of that ends up being too complicated. One of my sources, Laurie Mackenzie, who has joint appointments at MD Anderson and Baylor, said that as cancer care becomes more and more complex, we’re getting more and more subspecialized. So sometimes, we (meaning the provider) forget to have these multidisciplinary conversations. So yeah. Multiple reasons why they might be an overlooked population already, and then why this other little tricky piece might be missing for half of this population.
Jacquelyn Cobb: Yeah. Yeah. Absolutely. I mean, especially just the idea that these people—these kids, in a lot of cases—need to get treatment so quickly.
Claire Marie Porter: Yeah.
Jacquelyn Cobb: I don’t know. I can imagine how that can get overlooked just on a human level. Yeah. You know, you wanna get that as fast as possible.
Claire Marie Porter: Yeah, of course. Of course. I mean, I think a lot of something that was reiterated a lot, whether it was the patient side or the provider side, was that no one regrets having this conversation, even if it’s awkward. Even if it’s terrible in the moment, and both of my sources, Sadie and Sammy, said it was so uncomfortable. Your parents are there, the last thing you wanna do is talk about whether or not you wanna have kids. And they were older teens. So I think if you are prepubescent, going through puberty, it’s even harder. It’s an even more tricky and awkward conversation for for everyone, I think, which is why the emphasis is on the provider being able to kind of facilitate that conversation and navigate and guide a family through it, which Dr. McKenzie has been doing for over 20 years, I believe in the clinic. So it’s very possible. It’s just that you kinda have to get rid of that initial hump of it being awkward, but it’s definitely worth the time.
Jacquelyn Cobb: So how does this work with insurance, Claire?
Claire Marie Porter: Right. So, that’s another rub. A lot of times insurance, and this is state by state, but a lot of times insurance doesn’t recognize fertility preservation as medically necessary. So, we talk at The Cancer Letter a lot about financial toxicity and the burden of having to stop work and move, sometimes to get closer to your clinic, and then just the cost of the treatment. So, it is expensive. I have the numbers here so I don’t mess ’em up, but it’s an average of $10,000 to $15,000 for just the procedure to retrieve the eggs for a female. And there’s, on top of that, medications for ovarian stimulation medications to prevent ovulation, and those can cost an additional $2,000 to $4,000. And then embryo banking and IVF procedural costs are significantly higher. You know, as with any conversation about cancer and treatment, location matters a lot. And if you’re in a healthcare desert, if you are already a cancer patient living with other health disparities, all of that can affect your ability to make this happen. So, even if you get through these difficult conversations and you make a decision, oftentimes insurance will not cover it. So that’s another piece.
Jacquelyn Cobb: Yeah. That’s such a bummer. I feel like it seems counterintuitive that it is standard of care to have the conversations, but the follow-up isn’t necessarily standard of care or follow-through.
Claire Marie Porter: Yeah. Yeah.
Jacquelyn Cobb: That’s really a bummer.
Claire Marie Porter: And ASCO’s guideline does make mention of that pushing to make this more medically necessary.
Jacquelyn Cobb: Yeah. Absolutely. So, we talked about this a little bit off-camera as well, but can you put this in the context of the currency current policy changes happening in Washington right now?
Claire Marie Porter: Right. So, we just mentioned this kind of in brief in the story, but in a timely note, just this past week, or a week or two ago, the entire reproductive health team at the CDC has been RIF’d or DOGE’dor whatever you call it by the Trump administration. This department had, or these folks had, collected the congressionally mandated statistics on fertility clinics’ success rates. So without those workers, it’s unclear who at the department will help fertility clinics comply with the law. So another timely bit to it.
Jacquelyn Cobb: Yeah. Yeah. And that definitely won’t make the situation easier, that’s for sure. Yeah. So, to end on just a happier note, can you walk me through what the implications are if a provider does have this conversation with their patient?
Claire Marie Porter: Yeah, I think something that came up a couple of times when I was talking to different providers and patients is that as tough and tricky and nuanced and difficult as this conversation might be, it’s actually really indicative of a very, you know, optimistic prognosis. Dr. McKenzie said that if a patient is referred to me, that’s a hopeful thing. It means that we think you’re gonna make it through, and we think not only you’re gonna make it through, but you’re gonna be able to have a family someday. So what better news to be able to give a patient and their parents in the clinic on the same day as an aggressive cancer diagnosis, something like osteosarcoma. So, yeah, a really, kind of a beautiful piece to this difficult, tricky, messy conversation.
Jacquelyn Cobb: Yeah, absolutely. Well, it was lovely talking about that. I’m very happy we were able to find sort of the bright side of all of this. A nice way to end, because this could be just kind of a sad conversation. So I’m definitely happy to hear that. And thank you for being here, Claire. And I think next week we’ll have Paul back. He’s back up in Vermont, so he will be skiing as often as possible, but hopefully we can get him in the podcast. Well, thank you, Claire. Bye.
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.
