Don’t Give Up on Testicular Cancer
Don’t Give Up on Testicular Cancer
A Testicular Cancer Survivor Talks about Choriocarcinoma
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The Max Mallory Foundation podcast, hosted by Joyce Lofstrom, features testicular cancer survivor Jay Erickson, who was diagnosed in 2013 after persistent back pain and an abdominal lump. His widely metastasized disease was initially suspected to be sarcoma with a grim prognosis before blood markers confirmed testicular cancer, specifically rare, fast-growing choriocarcinoma with very high HCG and lung involvement.
He describes a year of treatment including three months of intense chemotherapy, four major surgeries, and complications. He explains how Memorial Sloan Kettering facilitated immediate sperm banking, enabling him and his wife to have a daughter via IVF during treatment.
Now, some 13 years later, Jay participates in three clinical trials. He explains how cancer reshaped his priorities, as well as his efforts to give back through Sloan Kettering’s Cycle for Survival fundraising, where he and his team have raised about $750,000. After writing a poetry book, Bloom, during his treatment, Jay now focuses on improving the patient experience and oncology care through his work in digital healthcare communications and marketing.
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Welcome to Don't Give Up on Testicular Cancer, a podcast where testicular cancer survivors, caregivers, and others who have navigated the cancer journey share their stories. The podcast comes to you from the Max Mallory Foundation. A nonprofit family foundation focused on educating about testicular cancer in honor and in memory of Max Mallory, who died in 2016 at the young age of 22 from testicular cancer. How do you survive? Max wanted to help young adults with cancer. This podcast helps meet that goal. Here now is your host, Joyce Lostrom, Max's mom and a young adult, Cancer Survive.
SPEAKER_02In 2013, Jay Erickson and Katie Rose decided to have a baby during Jay's chemotherapy, his treatment for testicular cancer. He had bank sperm before the chemo process began. I learned this story when I read about Jay during his treatment at Memorial Sloan Kettering Cancer Center in New York. Now here's a quote from that article. Unlike many men with testicular cancer, Jay Erickson never found a lump in his testicle. But in 2013, he experienced back pain that wouldn't relent despite multiple trips to a local clinic. He also felt a lump in his abdomen, which gave him pause. When the pain got to be overwhelming, Jay, then 38, insisted on an ultrasound. That's the end of the quote. Now Jay will tell us the rest of his story. So, Jay, thanks so much for being here with me today. I really appreciate it.
SPEAKER_01Thanks for having me. I'm happy to be here.
SPEAKER_02Let's talk about your story, your testicular cancer story, and what happened and anything you'd like to start with.
SPEAKER_01Sure. Yeah. When I was originally diagnosed, it was a very scary moment. They found some masses in my body and it had metastasized and was all over my lungs. And in the beginning, they didn't know this particular cancer. They thought it was a sarcoma. And the doc at the local hospital, who was a younger doc, was probably hadn't had a lot of these conversations, especially someone who was my age at the time I was my late 30s. It was basically like they maybe have a couple months and there's like nothing we can do. Was we were that's that was the outlook for the first couple days. And that was obviously absolutely terrifying. Any cancer diagnosis, because the word cancer has so much psychological and emotional weight, is terrifying. And I just was like, okay, I've got two more months on this planet. And then a couple days later, I got a call of oh, we found this blood marker. We actually, it's certain that it's not sarcoma, it's testicular cancer. We can fight it. There's things we can do, and you have a fighting chance. And that was the moment where everything started to shift. And it was a year of treatment, three months of pretty intense chemo, four major surgeries and complications. And it was a really hard experience. And but but it I made it, and and I'm here and healthy and have a family, and so it's yeah, I can go more into the detail of any of any of that, but that's the high level.
SPEAKER_02I guess the one thing was just you had a baby during your chemo, and that worked out. Let's just talk a minute about fertility and what you had to do, and then we can move on.
SPEAKER_01Yeah. So it's interesting. So my to tick care cancer, as I understand it, this is lay person understanding. I'm not a healthcare professional or scientist. My Chinese doctor would say it's like a pregnancy gone wrong in a way. You have these cells that are usually involved in making babies, and then they do something that is related but out of control. The tissue type is usually a mix of what they call teratoma, which is like differentiated tissue, which would be like the actual baby part, embryonal tissue, and then choriocarcinoma, which is more or less placenta. And so mine was choriocarcinoma, which is a subtype of tissued cancer that it's dangerous because it's super fast growing. And like placenta, it's very good at parasitizing and connecting to other blood vessels and growing really fast. So I had placenta all over my body, which as a man you should never have. Yeah. And so it was interesting that we were trying to get pregnant at the time. And my wife would say, Jay's thinks he can do everything by himself, which obviously was not a good idea. My tumor marker was a hormone called HCG, which is when you pee on a pea stick for a pregnancy, that's what it's testing. And a pregnant woman is maybe 50,000, 70,000 HC. Mine was 350,000. So it was like a lot. And when I started treatment, it got into my lungs and I was starting to cough up blood because it was parasitizing my lung tissue. When I started actually my chemo treatment in the ICU at Sloan Kettering, but all that to share the idea of pregnancy was somehow intertwined in my disease. And my wife and I decided the fertility program at Sloan Kettering is incredible. Most hospitals and cancer centers, they're there for the disease and they have a protocol and they're very focused on the disease. And some are better at looking at the entire picture. And it was not necessarily in a standard of care, but they had someone there very early on with a vial to collect sperm. Like I think that my first console at slow and cuttering, and had a courier waiting to bring it to Manhattan Cryobank. And they had this whole program set up, which is a little above and beyond and was amazing. And so we were able to bank some sperm because the chemotherapy can degrade your sperm. And during treatment, there was this big debate of should we try and get pregnant or not. And there was a bunch of people who were like, You have enough on your plate, you shouldn't do that. And there was this other school of thought that we ended up being in of we want to say yes to life. We want to just lean into the positive. And in retrospect, I realized also it was trying to find a right pregnancy as an answer in a way to the wrong pregnancy. And so we went through a couple rounds, and it's an intense, it's an intense process for the mother to go through egg retrieval, which is generally an seized and surgery. So we were both in our own medical pathways. And we actually used up all the sperm, and then we had this one viable blastocyst. It's an embryo that's about 500 to 700 cells, and they actually start it outside the body and test it, and then they implant it. And so we had one left, and that ended up being my daughter, Juniper. And so it was really amazing. And watching my wife's HCG go in this direction and my HCG go in that direction, there was a point where they crossed. That was a very powerful part. And then, yeah, to be out of treatment and be with my young baby daughter was an amazing experience.
SPEAKER_02Thanks for sharing that because I think that's an unusual part of your story, but with a great ending. I like what you said about the treatment at Memorial Slum Kettering in terms of maybe going outside of a standard of care with making sure that you bag sperm and it was saved the way it should be saved right away. I think that's just important for our listeners to know too, to ask for that wherever they are. The other thing I find really interesting about, and you're really good at explaining choriocarcinoma, because that's what my son Max had was 100% choriocarcinoma. And I never really thought of it or knew that it was considered placenta cells. And I think then you start to, you being me like, oh, what happened back then in that pregnancy? That's an aggressive cancer. I know that from just in general. But was there anything specific you wanted to share or could share about choriocarcinoma, whether it's your experience or just any details? And if not, that's fine too.
SPEAKER_01Yeah, I think I've shared most of what I know about. I think Lance Armstrong also had pure chorio. So that that's another thing I know about it. And particular cancer is rare. Pure chorio is even more rare. It's a very rare and unique thing. It can be, obviously, it's not doesn't always work, but it can be more responsive. There's a general rule, as I understand it, in oncology, is the faster growing the cell, in other words, the faster dividing cell, the more responsive it can be to chemotherapy. So very slow growing cancers, kidney and some others can are very harder to treat because they from with from chemo traditional chemotherapy, because they're very slow dividing. It's also why you lose your hair, you lose your stomach lining, because those are also fast dividing cells. So I do know that obviously it doesn't work all of the time, but it can be responsive. And in my case, it was very quickly responsive too. That the curve of that HCG count came down very fast. So I think if there's someone who is experiencing that, there could be like relief that can happen quickly as opposed to other cancers, it can be like a very long and protracted experience.
SPEAKER_02Yeah. Max, we got rid of all of it with chemo except in his brain, and that was the kind of ending is so to speak, because those spots never did go away. But I digress.
SPEAKER_01So it doesn't crop the the chemotherapy, BEP, and PIP doesn't cross the blood-brain barrier, and that's and then you have to look at other things and the other.
SPEAKER_02Yeah, and we did, but yeah, anyway, I just a side note. But you know, too, in your story, uh, your doctor recommended a clinical trial. You want to talk about did you go in a clinical trial?
SPEAKER_01Yeah, I'm actually in three clinical trials. Oh, oh wow. So the first one I signed up for was they were testing a new cocktail of chemotherapy as a first-line defense. So BEP was a control and as the standard, then TIP or TIP was the does this work better question and for this particular type of cancer. And I ended up in the control groups. And then I'm in a study called impact essay, which is a larger, big broad footprint study, its own cuttering of just gathering genomic data. So I have that as part of the BEP chemo. There's a substance called cisplatin, which can mess with your hearing. So I'm in a long-term study to look at the effects of cisplatin on hearing over time. Actually, just a couple months ago, I was getting my hearing tested. So I was in three studies. And there is studies and statistics around studies that people who are in studies tend to do better. And the theory is it's because there's more people paying attention. Obviously, you you need to weigh the risks of being in a test group, and you don't want to be a guinea pig, but as long as those risks are tolerable or even they might even be a benefit, especially at Sloan Kettering, that's one of the great places about a research institution like that, is access to the cutting-edge care. And by the time it's in a human trial, it's already been through a bunch of efficacy and safety stuff. So it's not like they're just throwing spaghetti at the wall. It's it's pretty rigorous by the time they put stuff into human beings. And and the other thing I think, like for me, it was very important to make meaning and to make trying to have goodness, whatever goodness was possible to harvest out of this very dark and negative experience, or in in lots of different ways. And that's shown up in lots of different ways. And it's a twist. And I feel like that's also what being a study participant can offer of no matter what happens, I'm some data that will help other people survive or have a better experience.
SPEAKER_02That's a great way to summarize it. You're right, because that data is what makes a big difference for research in so many cancer patients. So you said in the article and probably in our conversations that having this cancer changed your perspective on life. Can you expand on that?
SPEAKER_01The first thing it did, which it did immediately, and I've talked to other people who've had similar experiences and they have a similar thing, is it just puts you in direct contact with the ephemeral nature and impermanence of life. And it then also immediately sharpens what matters. And and it's interesting because it's we're all gonna die. Right. As far as you know, no one the only thing that's a hundred percent terminal is life. But as a culture, and just people death is often pushed to the side and people don't think about it, and they just run around and do the stuff, and when you just get caught up in these things, and then when death is knocking at your door, a lot of sort of BS goes away, and what you're left with is what really counts. And for me, it was so clear of like all I wanted to do. I'm starting to get a little emotional because I just remember I had two months. That's how I felt for two what I was my rally for two days. I have two months left, and all I wanted to do was to be with the people I love.
SPEAKER_02Yeah.
SPEAKER_01So it's like what else should we ever wanting to be doing? Obviously, you have to survive and be in the world and do capitalism and stuff, but you know, I think that's it just that was the most immediate and deeply powerful thing. And of course, it fades a little bit, and I like it's been 10 plus years, and I don't have that, but there is a deep part of this with me all the time. And actually, the there's an image of the medieval monks with skulls on their desks or looking at skulls and stuff, and those are called memento mori. And there's this whole, and in and Buddhism and Hinduism has a whole practice, and you see a lot of skulls in that imagery. Memento mori just means remember death. Just don't forget how fleeting this all is. And so I think it's a powerful practice that I was initiated into. And then I'd say the other thing that it really helped me with was just on my personal development was like slowing down. I always moved very quickly through life and just doing lots of different things. And I it was like the brakes got pumped and just being able to slow down a bit and just to uh access a different pace of life. That was a different shift in perspective. And then I the other thing I would say was asking for help. I've always been very independent, I can do it myself, but I it was a moment where I that kind of went away and I and I and I had to and learned how to ask for help. And I think there are times in our lives where hard things happen and we need to ask each other for help. And the people who are truly part of your community and love you and care about you are wanting in those moments to help you. So you're you're helping them put their energy somewhere also in those times.
SPEAKER_02That's great. Yeah, you've touched on many things about just asking for help and slowing down. That's one thing I'm not good at is I can slow down, but I don't live in the moment. It's always what's gonna happen down the road, what's gonna happen. When you just have to, you can't you have to plan, just kind of you miss so much when you worry. But anyway, that's thanks for sharing all that. So I know it's you said it's been what's been 20, what, 13 years since your diagnosis. I know you do a lot to give back. You do this fundraiser that goes on at Sloan Kettering. It's what is it? It's an indoor cycle for survival. You also wrote a book on a poetry book. So talk about some of the things you've done to give back and go through this experience.
SPEAKER_01Yeah, yeah. The first thing you mentioned, cycle for survival, that's been a big part. I had a a a friend I was put in touch with who is a mentor in a way, and we were both in treatment around the same time, and he was a little bit ahead, also an MD named Tom Berenberg. And him and I share the same oncologist, Darren Feldman, who's a leading um researcher and practitioner in testicular cancer and germ cell tumors. And so we have this team that we've been doing now for 13 years as part of Cycles for Survival, which is at Sloan Kettering, basically Sloan Kettering covers the operational costs of cycle, and then they have a partnership with Equinox, and then 100% of every dollar goes directly to research. And because we've raised a certain amount, we can direct that research. So we've raised, oh, okay, I think close to $750,000 over the last 13 years, and that has gone directly to Dr. Feldman's research, including studies that I and Tom are participants in. So, and there's been some amazing things that have come out of that. There was a immunotrial that happened that showed some success as a third-line treatment, and they're they're working on tuning it up. There's, but they actually went to trial. And the most exciting thing that's coming online, it's just approved by New York State. I think it's going to be rolled out. And this is again coming out of film's research, is basically using DNA fragment testing in the blood, which is way more accurate and precise and sensitive for testing. So you can catch it earlier, and if there's a recurrence, you can catch that way earlier. And that has a is incredibly valuable. So that's something that's come out of that. And then there's other you know, you know, obviously it's not just us, but it's still good to give back in that way. And it's a community every spring when we get together, we see people, and you know, it's really wonderful. And then yeah, I I wrote this book as writing poetry, it's always been a way for me to just process hard things and alchemize them and cathartically release them. And so that's how it had started, and also communicating to my community as I was going through the process. I I would write these blog posts, which would be mostly like these details and negative medical narrative and stuff that people wanted to know. And then there were I would also oftentimes share a poem, which was also like, here's what I'm feeling. A good way to communicate that. And so then at the end of the year, there's a program at Sohn Kettering called Visible Inc., which is about helping patients use writing. And they had I had all these poems, and they were like, You should talk to this woman who is do as a poet, and then we worked together and this idea to make this book, and she edited and put it out. And I've had a lot of feedback that it's been helpful for people who are going through it to feel left alone, and I think that's what art is supposed to do. So that felt good. And also, I in my work, my professional life, I work in digital strategy and user experience design and building digital products. And I have essentially focused pretty exclusively on healthcare since I I came back to work. And now I have the privilege of working with a pretty large scale to try and improve patient experiences and experiences for healthcare professionals with pharma companies and big healthcare providers. So that's another way that he's again trying to what are the veins of gold in this sort of dark mountain of experience that you can mine and offer to the world.
SPEAKER_02Several things you touched on, but first UA $750,000 in 13 years, your team for this. That's amazing, Jay. I just I I gosh, and for that research and all the things you described that have your money has helped, how big is your team? That's just outstanding.
SPEAKER_01I mean it's gone up and down, but usually we have, I don't know, between 10 to 20 riders per year. And yeah, I guess it adds up. Yeah. We've had some matching grants from some pharma companies. So yeah.
SPEAKER_02So the other thing I just have this is a logistics question, but where do you ride indoors? I have not heard of an indoor rate.
SPEAKER_01It's like a spin class kind of style. So they have a partnership with Equinox, the big gym chain, and then they and they bring a truck of these spin bikes and they move the equipment inside and they put all these foot. It's a very powerful because it's and also the spin class has this nightclub atmosphere. So you have this music that's going, and then you have the the instructors are getting everybody pumped up, and it's it has the great energy, and everybody is there because they're in treatment, they were in treatment, they've lost someone. It's got this really powerful feeling in that way, or they work at slow catering, and it's just it's really powerful, it's hard to describe. And then in there's usually these four-hour rides, and they you ride for an hour, and then there's a talk. And usually it's a survivor or someone in treatment or a healthcare professional telling a story. And so they you get the why are we here into the room in a way that can be very powerful, and then you just get the energy going, and it's just a great program.
SPEAKER_02I was being way too literal. I'm thinking you had a big track inside, and everybody had a bicycle. And I was like, where are you gonna do that? But anyway, okay. All right. So, what's next for life in you? You've talked a little bit about it with your work with digital health products and working in healthcare. That's my background too, in public relations and healthcare. But what's next?
SPEAKER_01I think it's just it's doing more of that and trying to do it more scale and more focus. I think there's some stuff happening with AI now and the data finally being a little more accessible and integrated through with EHRs and things, where I think there's this wave coming now of intervention and communication experiences for patients. I have a few projects where I'm really focused in specifically on in oncology. How can we help cancer patients specifically? One of the things I'm looking at right now is neutropenia and how people can one, we can better get data around and predict it because it happens. And for those of you who don't know what neutropenia is, if a lot of chemotherapies, again, fastiding cells get affected. Your immune cells are fastifiding. So if you have an intense chemo, your immune system can go to zero for periods of time, which is incredibly dangerous because you can die from a cold, essentially. And it's called neutropenia. And you can't eat salad, you can't eat fresh food, you can't see your community. Everything you want to be doing when you're a cancer patient, you're not allowed to do when you're neutropenic, and they give you this big window. So, how can we use technology to better track it and better predict when it's going to be? So they're supposed to not see anybody for four days or two days at a time when you actually really want that support. But you're probably only in the afternoon, if that. So can we improve quality of life and get better data for so that that's one of those use cases where I'm really trying to dig into and is directly related to my experience?
SPEAKER_02That's wonderful. We really need that kind of work and healthcare, patient experience, patient communication. So kudos to you for doing that. Thank you. So my last question is what song when you hear it, do you have to sing along?
SPEAKER_01Oh yeah, I mean I love singing along to so many songs. That's a hard question. But I I think what's coming now is into the mystic, the Van Morrison song.
SPEAKER_02Okay, all right.
SPEAKER_01Yeah, I think it's like this song or it's like we're in this great you're going into the mystery on this fog, and there's like this sense of unknown, but there's also this like I'm gonna be fearless in the face of that, and this sense of energy and strength and movement. And I think that there's a lot there for yeah. That's probably why I thought of it for this context.
SPEAKER_02That's a good song, yeah. Thanks for taking the time to talk to me, and thanks for everything you're doing to help with testicular cancer and patient care and so forth. And I hope you come back sometime and tell us kind of what's going on with all your work and just the bike ride too. So that's when does that happen?
SPEAKER_01The bike ride, is it it usually happens in March.
SPEAKER_02Oh, in March, it's already happened. Yeah, okay.
SPEAKER_01All right, yeah. All right, thank you so much for what you do and having these conversations and yeah, for fighting a good fight.
SPEAKER_02Yep. Thank you.
SPEAKER_00Thank you for watching this episode of Don't Give Up on Testicular Cancer. If you enjoyed this podcast, please subscribe to our program on your favorite podcast directory. You can also visit the Max Mallory Foundation at www.maxmalloryfoundation.com slash podcast. To listen to previous podcast episodes or donate to the foundation. Join us again next time for another episode of Don't Give Up on Testicular Cancer.