Episode 65: Growing up as a childhood cancer survivor

The Patient from Hell (00:01.379)
Hi, everyone. This is Samira Daswani, the host of the podcast, The Patient from Hell. I have a very special guest with me today. I have Cecilia here with me, who is here to tell you her story. I met her dad and then learned about what he and the family went through, and that's what prompted us to connect. So maybe we stop there. Tell us what brought you here today.

Cecilia Lang-Ree (00:06.158)
Hi.

Cecilia Lang-Ree (00:17.07)
Yes.

Cecilia Lang-Ree (00:26.19)
Yeah, absolutely. Yeah, like you said, you know, we were actually connected through my dad. He is a proud caregiver, a patient as a parent of a survivor, which is me. And we got connected through an event at our alma mater, which is Stanford. You were giving a talk about your work with Manta Cares on the panel, the Stanford Product Design Lab. And that's where you met my dad.

Like I said, he's a proud caregiver, parent of a survivor, and he immediately knew that we should get connected. So I was so excited to get connected and hear about everything you were doing.

The Patient from Hell (01:01.173)
Likewise. Cecilia, can you tell me more about your diagnosis?

Cecilia Lang-Ree (01:05.326)
Yeah, absolutely. So I was diagnosed with acute lymphoblastic leukemia, ALL, back in 1999 when I was four years old. I was an inpatient from the ages of about four to six, so kind of going into the early 2000s. I was treated at Lucille Packard Children's Hospital at Stanford. And then I was declared in full remission at about the age of 10. So between six and 10, I was an outpatient, receiving lots of different treatments,

but ultimately was able to call myself a survivor when I was about 10 years old. And now I'm almost 30, so it's been about 20 years since my survivorship journey has really started.

The Patient from Hell (01:47.588)
Can you tell me if you're open to it, any memories you have of being in patient?

Cecilia Lang-Ree (01:52.27)
Yeah. my gosh, I have a lot of memories. And, you know, I think that credit really goes to my parents, my caregivers, and my care team for actually making it kind of as positive of an experience as it could be to be a young inpatient in a hospital. I remember I had an IV pole that was on wheels that I would stand on and skateboard around the hospital, using it as my little skateboard.

We would decorate the windows of my room with removable paint or all kinds of different arts and crafts, lots of movie marathons in the room. And the story that I think illustrates this the most is the day that I was discharged when I was six years old. My parents are celebrating, they're so happy. They're like, thank goodness we're getting out of here. And apparently the story goes, I walked out of the door of Lucille Packard and kind of turned around and said wistfully,

"Man, I'm gonna miss this place." Which my parents were like, what the heck? How could you possibly miss this place, you know, where you were going through such intensive treatment? But, you know, it really speaks to the fact that as much as possible, they did their best to make it, you know, a normal childhood.

The Patient from Hell (03:09.795)
How did it change your friendships?

Cecilia Lang-Ree (03:09.806)
Yeah.

Cecilia Lang-Ree (03:13.518)
Yeah, it's a great question. And again, you know, I was so little that memories are a little bit fuzzy, but I remember having to be really just open with kids. So, you know, I was discharged at around six, but, you know, right around that kindergarten age, like five, six, I started to be able to attend some school in person. And we had to really notify the whole school and all the other kindergartners and their parents of protocols for, you know, if you're sick, you need to stay home or tell Cecilia and

kind of what's going on. And, you know, I just remember wanting to fit in as much as possible, but having this very obvious difference between me and other kids. And then as I kind of got older and, you know, moved away from it, grew away from it, I didn't really talk about it for a very, very long time. But, you know, I do wonder looking back if there were impacts of being taken out of that system at such a young age. Again, I was lucky I was

relatively a low risk patient. I didn't have any recurrences or anything like that, but I was still missing school and not on the same page as other kids. So I'm sure it did affect it to some extent, but again, I was kind of out right around that edge when kids really pick up into kindergarten. So luckily I wasn't like delayed in school or anything like that.

The Patient from Hell (04:33.091)
And how has it changed your, I shouldn't say life, that seems too big a question, but maybe career choices, maybe kind of how does it affect you as a 30 year old?

Cecilia Lang-Ree (04:37.934)
Hahaha!

Cecilia Lang-Ree (04:42.094)
Yeah.

Cecilia Lang-Ree (04:45.774)
Yeah, yeah, I mean, it's a major part of who I am and it has never really left me. And again, right, it's hard to say 100% because I was four, right? I was a kid and these aren't really necessarily conscious decisions you're making. So, you know, thinking about how it shaped me and looking back, I was always fascinated as a little kid by science and particularly biology. So whether that was marine biology, human biology, I was always had like a little bit of a knack

for science and yet somewhere deep down, I also always knew that I didn't want to be a physician. I knew, you know, I'd seen what a physician did. I'd been so deeply in that environment and it was fascinating to me, but I knew that that was not the space where I wanted to kind of go back and make an impact. That was just part of it. And I was particularly lucky because I had access to some really good mental health care post-treatment. You know, as a little kid, I was dealing with

certainly trauma, right, and anger issues coming out of why me, why did this happen, and reintegrating into society. And so originally kind of throughout high school, I thought of myself maybe going down the path of becoming a clinical psychologist and providing that mental health care. But once I got into college, I went to college in the Bay Area like you, right, I sort of discovered this world of digital health that was really emerging. And I realized I had this,

opportunity to work on these problems and questions that I cared so much about, but doing so at a really, really big and impactful scale kind of through technology. And in particular, I became super passionate about how digital health could increase access to health information and empowerment and data for millions and millions of people, right? So looking back at my experience in the hospital, I was very privileged. I was very lucky that I had

parents who could read scientific journal articles. They could read my clinical protocol and understand the potential side effects and take action to prevent them. They could be my advocate with doctors and nurses and others. But I saw firsthand that most of the other kids in the hospital did not have that. Many were children of undocumented immigrants or folks just did not have access to that kind of information. And so for me, that has really sparked,

Cecilia Lang-Ree (07:09.166)
in my career, this passion for prevention, early detection, and really knowing that health data and health knowledge is power.

The Patient from Hell (07:19.811)
It's what's striking me in this conversation is as a four year old, you're seeing this happen as a four four year old in a hospital in an incredibly privileged part of the country. You're seeing such massive differences and experiences.

Cecilia Lang-Ree (07:30.19)
Yes.

Cecilia Lang-Ree (07:33.934)
Massive. I mean, you know, for those familiar with the Bay Area, if you kind of go down south just a little bit past the main peninsula, you come into the communities like Salinas, for example, which are agricultural communities, farming communities, lots of immigrants, undocumented folks, and their kids who are working in fields where they're spraying pesticides and they're spraying chemicals that unfortunately we now know to be carcinogenic. And so unfortunately you saw large populations there.

And so, you know, I've I've transformed that to this career in digital health, where again, how can I make this kind of information accessible to as many people as possible? I started my career after grad school at 23andMe. I was building prevention and early detection products for them, you know, not only for cancers, but also early detection of chronic diseases like type two diabetes.

And now I'm doing similar work actually more in the metabolic health space, working at a glucose sensing startup called Biolinq really trying to bring that metabolic health information and empowerment to as many people as possible. Because again, I think that ultimately you can't take the steps to create the survivorship life or just the healthy life that you want without it.

The Patient from Hell (08:49.987)
I'd love to talk a bit more about AYA, right? Because the term AYA, I fall into it, you fall into it, and our experiences are similar and very, very different at the same time. I got diagnosed at 34, and yet we're kind of in the same cohort, right? So I'd love for you to talk about what it's been like to be in that community, and then maybe a little bit more about how you grapple on the personal side

Cecilia Lang-Ree (08:54.67)
Mm -hmm.

Cecilia Lang-Ree (09:06.606)
Mm -hmm.

The Patient from Hell (09:20.227)
with uncertainty.

Cecilia Lang-Ree (09:22.062)
Yeah, yeah. So AYA stands for adolescent and young adult, right? And it can mean folks who were either like yourself diagnosed as a young adult or adolescent, or people like me who were diagnosed younger but are still dealing with cancer. Cancer is still part of my life as an adolescent and young adult. And really thinking about what are those issues during that period of life that can be affected by your cancer treatment?

And being part of the AYA community has been interesting for me because again, since I was so young, I do have a different experience than someone who was a fully functional adult and then lost that full functionality and that freedom, right? I was still very young, but there's an interesting comparison. One of my dearest friends from college, my roommate actually, freshman year, ended up also being diagnosed with leukemia, AML. That's right, yeah, our sophomore year of college.

and had a really, really hard time of it. She's doing fantastic now. She's actually at medical school and UCSF. She decided to go that path with it. But, you know, seeing her going through treatment at a teenager at this time when you're just stepping into your identity and stepping into, you know, feeling like you might flirt with boys sometimes and wanting to go out and be social and all of a sudden you're just completely locked in. So.

We have very different experiences, but one thing we have in common is the fact that this does follow us and survivorship follow us, whether survivorship started when you were 10 or when you were in your 30s like you. And you asked about uncertainty, right? You asked kind of what are these different phases that we've sort of moved through? Yeah, yeah, you know, it's again, it's been interesting just reflecting back on the last 20 years, because I do think that my attitudes towards it have changed over time.

I kind of mentioned like when I was really little, just out of the hospital, just coming back into school, not college school, I pushed it away. I didn't want the attention. I wanted so badly just to fit in and be normal. I didn't want anybody to know, push it away, push it away, push it away. Don't put this intention on me. I never wanted anybody to mention the C word, cancer, because when the C word got dropped in the classroom or anywhere else,

Cecilia Lang-Ree (11:42.318)
it just changed the energy in the room. It just sucked all the energy out and people look at you differently. They really do. And I did not like that at all. I wanted to be normal and I wanted to do everything for myself, 100%. And that went down to, I was offered extra time to take my tests in school. I rejected it. I never wanted special treatment. I never wanted that extra time. And that really lasted through my sort of early adolescence till I was about 16.

the junior year of high school, I'm taking the SATs. I'm preparing to apply to, you know, competitive colleges, really thinking about my future. Who am I going to become? and just randomly, my mom and I happened to go to a local vintage fair, antique fair that was popping up in our neighborhood. And one of the booths was staffed by a woman and her daughter who had been my roommate, at Packard when we were both sick. So we were.

Yeah, we were roommates. We had the same condition, ALL. We were on the same clinical protocol. We were the same age, race, from the Bay Area, very, very, very similar, me and her. And here I was ready to go off to Stanford and worry about the SATs and all this silly stuff. And this girl had had such significant side effects from our shared clinical protocol that she was illiterate

and she was gonna be illiterate for the rest of her life. She had experienced such significant cognitive retardation and cognitive delays from that protocol that she was gonna be dependent on her family for the rest of her life. And that was a big moment for me. That was a big shakeup for me. And of course, immediately I asked my parents, did you know about this? Like.

why hadn't I been told about this? And I discovered that when I was very young and discharged, my parents had actually been told by my oncologist and care team that I would never do math or science, that I would be academically delayed, I would never perform at grade level, I would never be able to run a mile, I'd be athletically stunted as well. All of these side effects that they were seeing coming through from this protocol.

Cecilia Lang-Ree (14:05.038)
And they told my parents, they said, this is just her destiny, this is what's gonna happen. But my parents never told me that that was what was supposed to happen to me. And that allowed me to step into what I was actually capable of, which was really, you know, actually pursuing a career in STEM, pursuing a career, you know, in math and science, being an athlete.

And so that really sparked kind of a next phase of uncertainty for me, which was asking these questions. Okay, what does this actually mean for me? You guys have been told either not to worry or to worry about something, but what is the reality? What's actually going around in my body? So that's when I started to ask these questions around my future fertility, right? Is this gonna be something I have to worry about? Are there any other side effects that I need to be worried about? And generally the response that I got at that time was,

If we think you're fine, we've been told, you know, based on what you got that you're fine and there's not really anything to worry about. So that sparked off kind of a next phase, which is like my teens, college, like into my early twenties, I started to kind of own it a little bit more. Like I sort of owned the narrative of being a survivor. I leaned into this like badass narrative, right? Of like, I'm kick butt, I beat cancer. I...

The Patient from Hell (15:23.267)
Yeah.

Cecilia Lang-Ree (15:23.534)
got really, really involved in things like Relay for Life, did more speaking engagements, and just became more comfortable owning that narrative and talking about it, right? When as a little kid, I was like, no, I don't want that associated with me at all. But, big caveat here, I was still very attached to this image of myself as being as normal and healthy as possible, right? I hated, like as a teenager and young adult, I hated going to the doctor.

I hated getting sick, even if it was just a cold. I did not want any contact there. I wanted to be as normal and strong and perfect as possible. And then something happened that was a total coincidence, but actually cracked open really kind of the next level of not even uncertainty, but actually empowerment in my journey as a survivor, which was a total coincidence that happened when I was working a 23andMe.

The Patient from Hell (16:22.819)
I'm ready, tell me more.

Cecilia Lang-Ree (16:24.238)
Yeah, so, you know, I was working at 23andMe, which if folks don't know, provides at-home genetic tests to learn more about your ancestry or your health risk. And as part of my job, I was asked to audit or try out other types of at-home tests. So there's lots of at-home tests that look for different risk factors across many different conditions. And one test that I just so happened to try out as part of my job was a test called modern fertility,

which is a blood test that tests for common hormonal markers of fertility. And again, I went into it thinking probably nothing's gonna come up of this. I'd been told repeatedly that I had nothing to worry about. And I was really just doing this for work, essentially. And I took the test and I got the results back

and actually ended up finding out from that test that I had really, really low AMH, which stands for anti-müllerian hormone. AMH is a hormone, it's a biomarker essentially for ovarian reserve or how many eggs are left in your body. And all women, right, are born with all of the eggs that they're ever gonna have and as we age and go through our menstrual cycle, we lose, you know, eggs per month.

However, what I had not learned at that time is that the effects of my chemotherapy essentially meant that despite being only 23 years old, I had the AMH basically of a 30 or 32 year old, which is not bad, right? I was still fertile, thankfully, still capable of having kids, but my window for when that was gonna be possible for me was much shorter than I anticipated because I was basically almost 10 years biologically

advanced of where I should have actually been. And it was really, really, really scary, to be honest with you, to get those results. It was incredibly intimidating. I was seriously dating my now husband. I was terrified to tell him about this, whether that meant that I was defective or there was something wrong with me. I didn't know what to do about it. I didn't know what it meant, but it kind of cracked that door open of, okay, we can't...

Cecilia Lang-Ree (18:43.15)
pretend that there's nothing happening anymore. We can't keep pushing this away. We need to move beyond that uncertainty and sort of almost willful uncertainty that I was putting myself through of, I don't want to talk about this. I don't want to mention this into, all right, we've got to deal with this. We have the data. What are we going to do next?

The Patient from Hell (19:05.507)
There are a couple of - there's so many thoughts I have.

The Patient from Hell (19:11.587)
And actually, before I go into the specifics of the fertility piece, it is so clear that you are a designer. And I'm also the daughter of a designer, by the way. Just in the way you tell your story, I have been sketching, and I kid you not. Just in the way you're telling your story, I'm like, all right, here's my user journey map. Here are my milestones. Here are the moments of inflection.

Cecilia Lang-Ree (19:18.486)
Yes.

Cecilia Lang-Ree (19:28.75)
There you go.

Cecilia Lang-Ree (19:33.102)
the post-its going up on the board as I'm talking. Yeah, you know, and the reality is, is like it was these different phases. It has been a journey over the last 20 years. And I still have that part of me that so desperately wants to be normal and wants to not be that sick little girl. And I've been lucky enough to get, you know, a lot of therapy and help, you know, working through that. But it's something that I struggle with every day of this balance of

you know, knowing that I have these risk factors and I can talk more about, you know, taking action to, to prevent them or to mitigate those risk factors, but also still being like, okay, I have my life here. I am healthy. I've been given this gift of my mind and my brain and my health now. And what do I do do it? that.

The Patient from Hell (20:26.627)
How did you know you wanted to have biological kids?

Cecilia Lang-Ree (20:30.382)
You know, I don't know how I knew. I think the better answer is I always knew I wanted it to be an option. I always knew I wanted it to be an option. I think a lot of it comes from hearing my mom talk about the experience of feeling kind of connected to us, you know, throughout pregnancy and birth. And not that that's something that can't happen, let's say with an egg donor or an adopted child, of course. But, you know, for me, it was just...

kind of what I was drawn towards, right? There's aspects of yourself that you want to pass on or carry on. Now, if it turns out that the efforts that I went through are not successful, and those are my other options, then we go back to the table and we think about it. And maybe there's a world where we use an egg donor from within the family, right? Or something like that. But yeah, I think it's very emotional. It's not a logical decision. It's sort of this, I guess, deep,

caveman calling, if you will. But the one thing I did know is I wanted options. I wanted that to be an option that was on the table for as long as possible. And I also knew I was not ready to have kids when I was 23 years old. So I wanted to make sure that that journey fit within my timeline and my plans. And like I was just talking about, I really care deeply about my career and the things that I work on day to day. And,

I had wonderful managers at the time. I remember my manager when I told her in a very vulnerable moment, she said, well, you could just go get pregnant right now if you want, we'll support you. And I was like, Courtney, I've been dating this guy for a year and I'm 23 years old. I'm not gonna go get pregnant right now. But yeah, I think at the end of the day, it just came down to not wanting to let cancer take options off the table for me that I could still have.

The Patient from Hell (22:24.035)
How did you tell your then boyfriend about this and how did you get yourself over the emotion of feeling defective?

Cecilia Lang-Ree (22:34.03)
Gosh, well, I sort of willed up the courage. Well, I had actually held off on telling him. So, you know, the first thing that I did when I got the results is a ton of Googling and maybe some downward spirals in Google of reading all these scientific papers of what does an AMH level of this actually mean? And, you know, down that nerdy girl rabbit hole.

But luckily was able to find an amazing, amazing resource in specifically that the Stanford AYA Survivorship Clinic, which is a program. It's a program run by Lucille Packard, Stanford Health, and specifically again focused on the AYA population navigating survivorship and navigating all of these effects that take place, you know, both during and then following treatment that are particularly salient for young adults.

The Patient from Hell (23:28.099)
Thanks.

Cecilia Lang-Ree (23:28.206)
fertility being a big one of them. And I got connected with the Stanford AYA. And basically I remember getting on like a two hour long phone call with their director, Pam, who is this fantastic nurse and walking her bullet point by bullet point through my results. What does this mean? Is this good? Is this bad? What do I do? And she was just an incredible, incredible resource to help me understand what it meant. Cause I didn't want to go to him

without a clear understanding of the what does this mean, the next steps, right? I didn't wanna come with just fear. And through her, right, I learned that for many women, for some cancer treatment can eliminate their fertility altogether, depending on the types of chemo you get. And then for others like me, it can limit your window, it can shorten your window of fertility. And so that was really the narrative that I came out of that conversation with and also the narrative that,

I had options. There were things that I could do right away to preserve my fertility at the age that I was at and have options. So once I learned about all of that, I remember I went over to his apartment and I was probably so nervous. And I said, honey, like there's something that I have to tell you. Like, can we please sit down? He's like, okay. We sit down on his little couch and I'm just sort of prepping myself up for this conversation. And I think I said something like,

I took a fertility test and the cancer affected my fertility and I don't know if I'm gonna be able to have kids but I need to go and freeze my eggs right away so will you support me? And just word vomited it out. And God bless him, his immediate reaction was just to give me a huge hug and a kiss and go, thank God honey, I thought you were gonna tell me you had cancer again.

Yeah.

Cecilia Lang-Ree (25:21.198)
and just say like, I'm here for you. Like, I'm so proud of you. I'll support you through this, whatever you need. You know, and again, at that point we hadn't been dating that long, but I think he saw, you know, what I was willing to go through to keep that option on the table for me and, you know, for potentially for us. And he was a really, really incredible support system during that first round of egg freezing. I was really grateful. And...

The Patient from Hell (25:38.531)
Yeah.

Cecilia Lang-Ree (25:51.534)
And he never made me feel like I was defective. I think that was a big part of it, is he made me feel like this was actually a powerful thing to do, was to take control in this way. And that it showed, you know, my devotion to my goals and to a future family. But it's been a lot of work to not feel that way. You know, I think that in a lot of survivors that's probably buried kind of deep inside of us.

there was something wrong, it feels almost your body is trying to kill you, your body did something wrong. And it's a work in progress, I would say. I'm feeling a lot stronger and better about that in recent years, but it's been lots of years of therapy and support and kind of working through that trauma of that sick little girl who just wants to be normal.

The Patient from Hell (26:46.083)
That is, that's profound on so many levels, Cecilia. Thank you for sharing.

Cecilia Lang-Ree (26:50.958)
Yeah, it was intense. Yeah, and he was a big part of helping me through that. I mean, you know, holding my hand while I did my own, you know, injections and going to all the appointments and taking notes and it really, you know, it brought us together through hardship. Yeah.

The Patient from Hell (27:17.219)
At some point I need to meet him. Just saying.

Cecilia Lang-Ree (27:19.342)
Yes, yeah you do. Well, his mom is also a survivor too. So that's another kind of connection. Yeah, his mom is a breast cancer survivor. And that actually, she was diagnosed literally when we were a month into dating. We were just a month into dating and his mom is diagnosed with breast cancer. And, you know, he said, looking back on it, he freaked out for a minute, because he's like, I'm gonna have to be there for my mom. Do I have time to juggle that and this new relationship?

The Patient from Hell (27:23.971)
WHA -

Cecilia Lang-Ree (27:47.918)
But actually, I was able to, in some ways, kind of be that caregiver role for him and supportive role for him while his mom was going through treatment because I just knew a lot about how it all works, right? So it was paid forward and then really paid back. Yeah.

The Patient from Hell (28:05.955)
Wow.

The Patient from Hell (28:10.979)
So we're going to do an experiment. You're the first one putting this experiment on. We're going to do the rapid fire round. The reason it's an experiment is usually, as you know, our format for the podcast is conversation, right? We have conversations and we're going to go. What we're learning from our listeners is that, not surprisingly, in the world of TikTok and Instagram, people want short reels and short videos in addition to the form.

Cecilia Lang-Ree (28:12.846)
Okay.

Cecilia Lang-Ree (28:16.526)
Alright.

Cecilia Lang-Ree (28:25.582)
Mm -hmm.

Cecilia Lang-Ree (28:36.526)
There you go.

The Patient from Hell (28:38.819)
So unfortunately, you're a guinea pig for me, I'm sorry. But I figured you'd be open to the experiment.

Cecilia Lang-Ree (28:42.606)
It's okay.

Cecilia Lang-Ree (28:46.638)
and studied. I am literally currently being studied on this fitness tracker. They're doing a sleep study for me and the long-term follow-up. So yeah, go for it. I'll be your guinea pig.

The Patient from Hell (29:01.571)
All right, thank you, thank you. Okay, so what we're gonna do is I'm gonna ask you a question. And I'm looking for a one minute, two minute answers, pretty short, pretty snappy. We can do it really if you want, but pretty quick. And the goal of it is actually one of your mission and my mission is to get information out there in a way that people can understand in a format and channel they're used to.

Cecilia Lang-Ree (29:07.342)
Okay.

Cecilia Lang-Ree (29:13.902)
Thank you.

Cecilia Lang-Ree (29:24.078)
Yeah.

Cecilia Lang-Ree (29:28.238)
Yeah.

The Patient from Hell (29:30.627)
and in a way that is accurate.

Okay, so we're not docs, of course, we're survivors sharing stories. So with that, God bless.

Cecilia Lang-Ree (29:37.326)
No. That's right. Caveat here. I may have a master's from the Stanford Medical School, but I am not a doctor. I didn't put that on my car for a reason, because I cannot save your life in a car accident. But I can design you an intervention.

The Patient from Hell (29:54.723)
There we go. All right. So with that caveat done, we're going to go through maybe eight to 10 questions. Okay. Ready? Okay. Question number one. What does AYA stand for?

Cecilia Lang-Ree (30:02.414)
Sure.

Cecilia Lang-Ree (30:06.606)
AYA stands for adolescent and young adult. It's typically used to refer to folks who go through cancer diagnosis or treatment during adolescence or young adulthood, but it can also be used to refer to adolescents or young adults dealing with cancer survivorship and the long-term impacts of childhood cancer treatment, like me.

The Patient from Hell (30:28.131)
Love that, you're so good at this. Okay, next question. When should a cancer patient and their family ask about fertility?

Cecilia Lang-Ree (30:36.238)
Right away, at the point of diagnosis or as soon as you can possibly have that conversation. So depending on your age and your prognosis, there might be a chance actually to preserve fertility right away before you even go into chemotherapy or radiation. There might be an opportunity to do a round of fertility preservation or get connected with resources after treatment that can help you plan for the future and make sure that you're thinking about it as early as possible.

The Patient from Hell (31:07.043)
What is egg freezing?

Cecilia Lang-Ree (31:09.518)
So egg freezing is a method of fertility preservation, and it's the process of cultivating, harvesting, and then freezing a set of eggs from the female body that can then be defrosted potentially years down the line and artificially inseminated to create embryos and pregnancies. And a lot of people think of it kind of like a time capsule because it freezes your eggs in the condition they were in at that age. So I froze my eggs at 23.

they are essentially a 23 year old's eggs. So the younger you're able to do it, generally, likelier, the higher quality your eggs are gonna be. And for those of us with a shortened window, it extends that window potentially to have kids later.

The Patient from Hell (31:53.667)
What is an embryo?

Cecilia Lang-Ree (31:56.078)
An embryo is a early stage human fetus. Well, I suppose there could be embryos for other animal types too, but an embryo is a early stage human fetus that can be created either certainly naturally or artificially. Embryos eventually develop into babies.

The Patient from Hell (32:16.227)
What is embryo freezing?

Cecilia Lang-Ree (32:18.766)
Well, embryo freezing takes egg freezing one step further. So as opposed to just harvesting and freezing the eggs by themselves, the single cells, it actually fertilizes the single cells in the lab. So using either a sample from a sperm donor or a partner, they are artificially inseminated once the eggs are harvested and then grown in the lab, usually over about five days or so to see which of those fertilized eggs become good quality

embryos that can then be frozen. Then again, they're frozen similar to the eggs. If and when you choose to use them, they are implanted into the body, hopefully then becoming a healthy pregnancy. And typically we see better chances of successful pregnancies with frozen embryos versus frozen eggs because they tend to be more, shall we say shelf stable.

The Patient from Hell (33:11.235)
What is ovarian reserve?

Cecilia Lang-Ree (33:13.998)
So ovarian reserve basically just means the number of eggs left in your body and is sort of a window, a biomarker for the window into how long you have left to have kids. So over time, your ovarian, I'm gonna do that again. Over time, your ovarian reserve declines naturally in every woman, but for folks who have gone through cancer treatment, their ovarian reserve is typically a little bit less than your average healthy person.

The Patient from Hell (33:44.067)
What is AMH?

Cecilia Lang-Ree (33:46.222)
AMH stands for anti-müllerian hormone and is a biomarker essentially of how many eggs are left of the ovarian reserve.

The Patient from Hell (33:56.259)
What other fertility tests do you do?

Cecilia Lang-Ree (34:00.558)
I would have to go back to my modern fertility results. I believe modern fertility that I did in particular was AMH, FSH, and...

It might've been LH. Yeah, I think so. I'm gonna have to go back and look, but I took that test over the counter and my OB-GYN, my physician decided to repeat the results just to make sure that they were legit and pretty much everything was spot on with the lab blood draw results. Yeah. And essentially all of these give you a picture into different pieces of your fertility, right? So how long is the fertile window that you have?

How good quality are your current eggs? Are your hormone, your menstrual cycle operating properly such that you could get pregnant? Different aspects that impact fertility, some of which may be infected by cancer in different ways.

The Patient from Hell (34:56.259)
What is the best resource you found in navigating fertility?

Cecilia Lang-Ree (35:00.814)
Honestly, survivorship clinics. So there are survivorship clinics all over the United States that really help survivors navigate these follow-up effects and can actually connect you to resources that are specifically tailored to survivor fertility. So in my case, I went to the Stanford AYA Survivorship Clinic and was able to speak directly with a nurse who helped me walk through my results and understand what they meant for me, and then actually connect me to the Stanford Reproductive Medicine,

branch who actually offered a 50 % discount on all fertility preservation services to survivors. So because of that clinic, I was able to, you know, financially make this work.

The Patient from Hell (35:46.211)
What is the best thing a friend can do for another friend navigating fertility?

Cecilia Lang-Ree (35:53.774)
them what they need. You know, that might be a ride to or from the clinic when they are, you know, on all kinds of painkillers. That might be someone going to the appointments with you to take notes. That might be just someone bringing them takeout and chocolate, you know, after their retrieval procedure, which can be not very pleasant experience. So ask them, ask them what they need, and then let them guide you into what would be best at that moment.

The Patient from Hell (36:23.619)
What's a retrieval procedure?

Cecilia Lang-Ree (36:26.51)
Sure, so maybe I could talk a little bit about just generally the process of egg freezing and go into the retrieval itself. So, you know, in a typical menstrual cycle, your body matures and prepares one egg per month to be ready for potential fertilization and becoming a pregnancy. In egg freezing, you use hormones to actually stimulate your body to grow more than just one egg. So...

Generally in your body, you have multiple follicles that could become an egg any given month. And generally, like I said, one per month is sort of chosen to become that month's egg. With egg freezing, you stimulate all of those follicles to grow and mature into full eggs over the course of typically about two weeks of injections and stimulation.

And depending on how many eggs are left, this can be a bit of an uncomfortable process. You get pretty bloated and swollen. Your body's not really meant to carry that many maturing eggs at one time. But over the course of this sort of two-ish weeks of injections, you essentially try to grow as many of those eggs to maturity as possible. And then in the retrieval, once we have a good number of eggs that are mature and ready, you are generally sedated, you're put under,

and your reproductive endocrinologist or whatever specialist is doing the procedure will use sort of a large needle to go up the vaginal canal, I believe through the cervix and sort of aspirate those eggs, suck the eggs out into this needle. And then they are counted, they are sort of looked at for quality and then frozen right there on the spot if you're going through for egg freezing. So.

It is a pretty invasive procedure. It can require certainly some downtime. I definitely was very affected by some of the hormones that you have to take during that process. But at the end of the day, for me, it was really worth it, like I said, to keep that option open.

The Patient from Hell (38:33.315)
What piece of advice would you give to an AYA patient newly diagnosed with cancer?

Cecilia Lang-Ree (38:40.558)
I would say to think of yourself as a survivor right away. Like, think of yourself as a survivor as soon as your brain will allow you to do so. Because survivorship is not something that you wait around to be handed to you. Healthy, joyful survivorship starts during treatment. And, you know, our doctors are rightfully very focused on curing us and making sure we get well.

They want to get us to that point of making us a survivor, but after that, it's up to us to figure out what it is you need to be on the lookout for and advocate for the care that you need. So start thinking about that right away, ask questions around your potential side effects, and think about what can be done to mitigate them now, because there are many things that you can do to mitigate side effects before they even come on.

The Patient from Hell (39:30.819)
Thank you so much. That was all of my questions. I appreciate you going with the, I added a few more questions into our mix on the fly. So thank you. How did that feel for you? Good? How did that feel? Yeah.

Cecilia Lang-Ree (39:34.094)
Awesome! Great!

Cecilia Lang-Ree (39:40.558)
Yeah, no problem. Yeah. Sorry? Good. Yeah, I think so. Good. Pretty natural, I would say. Is there anything else that I can, like, talk more about or go more into?

The Patient from Hell (39:55.715)
From my perspective, no, but I'm gonna turn it back to you as I wrap up. Is there any question I should be asking you that you want to talk about?

Cecilia Lang-Ree (40:02.294)
You know, I would just say that again, this notion that survivorship begins now, that means getting actively engaged in your side effects, doing what you can now, and also not hesitating to seek out resources like a survivorship clinic. I would really encourage folks to look up those types of resources. And you know, for fertility specifically, there are many fertility clinics and survivorship clinics that offer

free or reduced cost fertility preservation services like egg freezing for cancer patients or survivors. So even if you think that this might be beyond your means or inaccessible, you know, this is actually an option for a lot of people and it was for me too. So ask your care team, be your biggest advocate if you can and you know, think of yourself as a survivor from day one and you'll be able to be on the right path towards the healthy life that you want after

cancer.

The Patient from Hell (41:02.851)
Thank you so much, Cecilia. I very much appreciate you for joining this episode. I suspect it's going to help a lot of people. And I appreciate you being my guinea pig for Rapid Fire.

Cecilia Lang-Ree (41:04.75)
Of course.

Cecilia Lang-Ree (41:09.39)
I hope so. No problem. Yeah. No, I hope so too. You know, at the end of the day, I just firmly believe knowledge is power. Data is power. It can be scary. I know it. Like I pushed that away for so, so, so long. I wanted to be normal, but this is the reality that we're dealing with and we are much better equipped to deal with it when we have that data and that information. So go out there and know your risks.

The Patient from Hell (41:36.611)
Thank you.

Cecilia Lang-Ree (41:37.998)
Thank you.