Living with Pancreatic Cancer

What is it like to live with pancreatic cancer?.

Randi Ervin was diagnosed with a pancreatic neuroendocrine tumor (PNET) in her 30s. Even after a total pancreatectomy she remains in treatment to keep the tumor in check.  

In the years since her diagnosis she has become an insulin-dependent diabetic, lost her mother to pancreatic cancer, and built a full life as a health equity advocate and volunteer with PanCAN's Survivor Council and Health Equity Committee.

In this episode, host Alisyn Camerota talks with Randi about what survivorship actually looks like a decade out — the monthly octreotide injections, the annual DOTATATE scans, the diabetes management, and the emotional weight of being both a patient and a caregiver. They also discuss why sharing your diagnosis with a wider circle can matter, how health equity shapes who gets to access good care, and why the five-year mark is not, in fact, the finish line.

For more survivor stories, visit letswinpc.org. 

For patient services and support, visit pancan.org.

PancChat is produced in collaboration with Let's Win Pancreatic Cancer and PanCAN.

PancChat sponsored by Revolution Medicines. 

What is PancChat Podcast with Alisyn Camerota?

The PancChat Podcast is a collaborative effort from Let’s Win Pancreatic Cancer and the Pancreatic Cancer Action Network (PanCAN), inspired by the long-running #PancChat Twitter/X chat.

Hosted by award-winning journalist Alisyn Camerota, each episode features conversations with leading researchers, clinicians, patients, and advocates who are shaping the future of pancreatic cancer care and research. Together, we deliver expert insights, personal journeys, and the latest breakthroughs—bridging the gap between science and lived experience.

Whether you’re a patient, caregiver, healthcare professional, or simply want to learn more, join us to connect, be inspired, and learn how you can help to accelerate progress in the fight against pancreatic cancer.

Cindy Gavin: Hi, everybody. I'm Cindy Gavin, CEO and co-founder of Let's Win Pancreatic Cancer. On today's episode, we will be taking a closer look at what it means to survive pancreatic cancer. Now over to you, Alisyn.

Alisyn Camerota: Hi, everyone. I'm your host, Alisyn Camerota. We also want to thank our sponsor, Revolution Medicines. So today our guest is Randi Ervin. Randi was diagnosed with a pancreatic neuroendocrine tumor, also known as PNET, in her 30s.

Since then, Randi has become a health equity advocate for others facing medical challenges. She also volunteers with PanCAN, serving on their Survivor Council and Health Equity Committee.

Randi, thanks so much for being here.

Randi Ervin: Thanks for having me. I hope everyone's doing well today.

Alisyn Camerota: I've been looking forward to talking to you. So let's talk about your story. You were diagnosed, as I understand it, in 2016, which means that you've been living with this pancreatic neuroendocrine tumor for about ten years. So, can you start by telling us how you were diagnosed and what, if any, symptoms you were having back then?

Randi Ervin: Yeah. So yeah, I'm going to hit my Whipple surgery anniversary in September. I had this — terrifies people — I had pretty benign symptoms. I was like itchy skin.

I had a lot of GI issues, but I always say I eat horribly, right? Like, I love junk food. I drink like a fish. I'm not necessarily the healthiest person.

So it was nothing that I thought was unusual.

Alisyn Camerota: I like the full disclosure of this, Randi. Thank you for sharing that with us. So many people couch their bad eating habits, but you just own it, which I appreciate.

Randi Ervin: I do. If I see tacos, I'll eat tacos all day. And then I said something, so I assumed I was — actually, I mean, pre-diabetic. Like, I was pre-diabetic. I assumed I was on a type 2 diabetes path.

I actually switched to a new primary care doctor, and she actually specialized in type 2 diabetes. And I, like, met with her, and I have a kind of unusual story. She was like, I don't think that's quite right. So she told me to get some blood work, and I did. And then after the blood work, I was recommended for an ultrasound, so I got it.

I remember my lab technician being like, "Are you sure you're just here for nothing?” And I was like, “Yeah. Like, I'm just here following directions. Like, what am I doing?

And then, later, they confirmed that I did have a growth inside me. And I had, like, you know, of your, like, your, you know, your PET scans, your CT scans, I was scheduled for a biopsy. I moved it down because I had a girls' weekend coming, and the growth was confirmed and it had to be removed. And then I went in for a Whipple procedure in September, and the cancer spread. So I ultimately ended up losing my pancreas, part of my intestines, my spleen, and my gallbladder.

So I am now actually type A. Like, I am a diabetic for another reason, though. But the symptoms were very benign. And I will say my mom also had pancreatic cancer after I was actually diagnosed; her symptoms, too, were a lot of GI. She was throwing up.

She couldn't hold down food. She had more organ failure than I did. So this is something where I say you have to connect dots. It's very good to have a care team that's more of a partnership because you have to tell them everything and let them figure it out. Right?

It's more art than science. So this is not like, you can't really fill your pancreas. I didn't really know what it did. I don't know the movement of it. And I look at I'm gonna say the story of my mom, because she just passed away.

But she was good at telling that story. She's like, look. Like, this is like, I'm having a hard time swallowing. I'm having like, when I eat, this is how long it takes for me to, like, throw up my food. Like, it — so you have to have a care team that is listening to everything you're saying and is taking it in an observational thing.

I know that's hard to come by. So it's one of those things where if you have a doctor and they're not listening to you, you need a new doctor. Like, you need your care team because they got to connect the dots. They went to medical school; they're the experts on that.

Alisyn Camerota: Excellent, that's excellent advice. Yes, you need to feel heard by your doctor. You need to feel like your doctor has their arms around whatever treatment you're getting and whatever is causing your symptoms. So when you say you had the Whipple surgery, was a piece of your pancreas removed or your entire pancreas?

Randi Ervin: My entire pancreas was removed. So in like, yeah, so what happened was while I was in surgery — and that's not, so it's not a true Whipple. Like, Whipple, you usually get, and the surgeon I have, Dr. Spencer, he's like known to actually draw things like on a whiteboard. And he drew on the whiteboard what to expect from — they remove part of your stomach, part of your pancreas, like, we organize things.

It's very weird. I remember my dad and I just being like, " Oh, that's weird.” We know those organs when they got removed. And when I was actually in the surgery, I was knocked out cold. My family tells me this, that they are going into pathology to check various parts of my organ because they realized it had spread.

And so it wasn't the intent when I walked in. They said that I could possibly be diabetic, but they just, I mean, no shade. They just didn't know that it had spread as much as it did.

Alisyn Camerota: And so when you say it spread, their intention was to go in and just take out your pancreas because there was a tumor in it, or maybe the Whipple, but then they ended up — while you were in surgery — having to take out other organs. Is that what happened?

Randi Ervin: Yeah, and there was no intent to take out my pancreas at all. So the intent was just to do a standard Whipple, which is a scary surgery, but it was a standard Whipple. So just to remove the actual growth and then, like, you know, rearrange where the intestines come in. And then why I wasn't — surgery there's like, actually, your whole pancreas has to go.

So that was not the intent, nor was — and they usually take out the gallbladder, I think, so that's pretty common for them to take out the gallbladder. But they weren't planning on taking out the spleen or as much as the intestine.

Alisyn Camerota: After you had that surgery, then what was your treatment, and what has your treatment been like over the past ten years?

Randi Ervin: Oh yeah, that's okay. I did the surgery, like, so I am a full-blown diabetic. Like, I've got my Omnipod and my insulin-taking devices and my CGM (continuous glucose monitor), I have all that stuff. I didn't necessarily start with that. Started with pins and just like, you know, the glucometer.

Also, I am not — no evidence of disease, so I still have lesions within my liver, which is pretty common. So I get an Octreotide injection every single month. I've been getting that since I think like what February 2017.

Alisyn Camerota: And just let me stop you. That you get — is that a chemo injection?

Randi Ervin: No. It's an infusion. It is in the chemo department. I realized that through billing, but I think it's more of, like — it's a Sandostatin, so it's not — yeah. So I, like, I go into an infusion clinic.

It is just an injection, and that's been going and it goes well. My, like, like, I'm stable. Like, I'm down to, like, one scan a year. There was a little bit of, like, a flare-up or, like, more lightning when it had to pause during COVID, for three months. So, but my body's responding well to it and still is.

Alisyn Camerota: That's great. I'm really happy to hear that. So has that been happening for ten years, or has your treatment changed?

Randi Ervin: You know, my treatment's actually been since 2017, the same with injections. A thing that has changed, I get a DOTATATE scan once a year, so it's a very specific radiopharmacologist, like, PET scan that actually, like, literally is for the tumor — the type of tumor I have — and literally lights up to see if there's growth or where it is in my body. And then I also used to get just, like, an MRI or another type of scan twice, like, another time of the year. So I used to be — I used to have two scans a year. Now I'm just down to one scan, and I just got it in January.

I got a DOTATATE scan in January, and that's it.

Alisyn Camerota: For you. That's better.

Randi Ervin: And then I'm gonna put a plug in for all of the, like, advances in diabetes care. So my diabetes care has actually changed a little bit. Right? Because now there is — I do have an Omnipod 5, like, you know, no tubing, which is a big deal, like, if you don't have a pancreas. I didn't wanna be on an insulin pump before, so I didn't want the tubing.

So that's a big deal. Like, the CGMs (continuous glucose monitors) are getting smaller and smaller, so I use the Dexcom CGM. It's getting smaller and smaller, so it's easier to manage. And then Zenpep (pancrelipase) — it's actually just something I figured out at PurpleStride. I've been on Zenpep, things your pancreas does.

There's pancreatic enzymes that, like, break down food to make it easier to process food. And the pancreatic enzyme I'm on, the Zenpep doses, it's like, I'm not going to say this right, so like bear with me, doctors. But like the dosage amount I'm on is actually like a smaller dosage and I take a couple of pills sometimes when I eat, depending on, you know, if I want to have pizza or something that's probably not that great. But now, actually even Zenpep offers like higher dosages in one pill. And that's like something they just came out — I think like last year or something.

So there is like handover fist. And then there is like PRRT treatments. That's not something I have to do, but probably my body has a habit of growing tumors. So, we'll probably grow a tumor again. And there are a lot of advancements, PRRT treatments, and just in general, like around treatments in cancer — Revolution Medicines, not necessarily my cancer, but huge advancement to just have like a pill for people with pancreatic cancer duct, so pancreatic adenocarcinoma.

So there's great things happening, so I'm actually optimistic.

Alisyn Camerota: That's really nice. Yes, the medical advances are really heartening in such a deadly, stubborn disease. Things are definitely in the pipeline, and that's been wonderful to witness. You touched on this before about how important it is to have your doctor listen to you, but if there's one piece of guidance that you can give to people who are at the beginning of this very daunting process and have been diagnosed with a tumor, a pancreatic tumor of some kind. I'm sure people call you. What do you say?

Randi Ervin: Yeah. So now, like you don't have to be an expert overnight. Like it's a lot of information. Things change. And actually, you don't need to be the expert.

You need to surround yourself with experts and people who listen to you. You need to find a care team who will take the pause and explain what's happening. And I send crazy email messages to my oncologist all the time because I like, I'm a part of like, an advocacy group, Pancreatic Cancer Action Network, and I'm like, hey. I heard about this thing. What is it?

And, like, you know, like, they'll explain it to me. That's huge. I mean, people will say not to Google because, yeah, it's not positive. Even, like, it's, like, either any of the pancreatic cancers are not positive. So, you might go down a rabbit hole.

I'm one of those info people who feels like you need to be an expert or you can't pronounce the drug properly or you don't know all the information. The idea is you wanna have a conversation with your care team and your family members. Something I wish I did a little bit sooner is I didn't tell, like, I told my immediate family, but I didn't tell my friends in my larger network as soon as I should have. And there was a wealth of information within that network, and just people that have experience that you might not know. So as soon as you open up your mouth or if you wore purple or if you've mentioned something that you're going, people might also kind of offer just an ear or a different perspective.

Alisyn Camerota: That's really interesting, Randi, because I, too, my husband was diagnosed with pancreatic cancer four years ago, and I, too, kept it very close to the vest. I just didn't want to tell a lot of people because I knew we'd be off to the races, and it's hard to manage everybody else's fears and grief and questions, and I just didn't want to do that. And so it's interesting to hear you say that you wished you had opened the circle a little bit wider, because when you did, you learned what? That people had had experience with pancreatic cancer or just other kinds of cancer? I mean what's the benefit of telling people?

Randi Ervin: Yeah, and I'm sorry to hear about your husband. How's he doing?

Alisyn Camerota: He passed away almost two years ago, so — almost two years ago, basically twenty-two and a half months ago — and he was the beneficiary. We both were aware of some of these new treatments, and that really helped with his quality of life. It didn't — well, I'm sure it extended his life too. It wasn't long enough, but he did get a good quality of life after his diagnosis because of some of these wonderful new advancements.

Randi Ervin: Yeah, yeah, no, it's not positive. And I will say two things. I had a friend who's an anesthesiologist, and I was going in through the Whipple procedure. He offered really good advice on like how to prep things, and I literally shared the pain management and the pre-prep stuff with him. And he was like, " Oh, this is what you can expect.”

He had good recommendations on how to, like, help with scarring afterward. Then with —

Alisyn Camerota: Wait, what are you supposed to do about scarring afterward?

Randi Ervin: You have a cream you can take to, like, reduce the scarring. And then you can also say, especially with Black patients, that, like, you're worried about — like, I'm blanking on the name exactly, but you can say it's a worry, and then your care team can give you more opportunities and options, and just like, I'm worried about scarring from going in. Yeah.

Alisyn Camerota: That's great. I didn't know that you could manage that. There you go. That's a great example.

Randi Ervin: And then I had a friend who was like a radiologist, is in that space, and so there was good information there. Like, just like I've had — actually, I went to a nerd night, and they actually talked about like radiopharmacology there. It's like nerd night. It's like a bar night where like people give like presentations on very specific topics. And one of those topics was radiopharmacology.

I went over later on, like, no, I actually get a DOTATATE scan. It was just interesting to be connected with people that have that. I'm actually still connected with some people who push that through. And I was like, that's fantastic. My mom, interestingly enough, was — they had a hard time diagnosing what she had.

So they thought it was something for her esophagus. They thought it was a digestive issue. They're in rural California, so she started at like the local hospital there, was transferred to VA Mather, like at the VA hospital in Sacramento, they still couldn't figure out quite what it was. When she's actually transferred to VA San Francisco, she's like, you know, my daughter has pancreatic neuroendocrine cancer. And they're like, let's look for that.

And it was actually an all-woman care team that was able to be like, wait, you have something in your pancreas too. So there's this conversation of just saying everything very openly. And like granted, yes, and my sister's terrified, but like yeah, now you get like drug testing, you get it, like, on people's radar in our family to be like, we weren't a cancer family, but apparently now we have two people who've experienced cancer, and this — they have pancreatic cancer. We've had some other cancers, but —

Alisyn Camerota: And your sister, I don't want her to be terrified, but obviously, she does need to be on notice. I mean, she needs to be monitored.

Randi Ervin: Yeah, I mean, yeah. She's on it. She knows more than me and she'll actually send me stuff like — and so do my friends. It's actually really funny. They'll be like, " Oh, I heard about this thing.”

And sometimes, you know, you've gotta take it with a bit of a grain of salt. You've gotta, like, take it in context, but you're also like, it's good that everybody's aware of this. Right? Or, like, you know, like, have, like, weird spots in my hair. Like, I'm going perimenopause now that I'm, like, elderly.

It's like, is it perimenopause or is it, like, the cancer? Like, it's — is it diabetes? Like, you know, but it's all like, just people wanna help and look out for you. And it's kinda nice to be in a situation where people are like, hey. Noticed this.

Or like, I heard about this. You know, and luckily I'm good now, but you know, eventually, you know, it's going to come back.

Alisyn Camerota: Yeah, that's great. I think that that's a great perspective for everybody to just, you know, cast a wider net and you get the benefits of — you're crowdsourcing basically the knowledge. Okay, so tell us about your advocacy work.

Randi Ervin: Oh yeah, this is actually like — so this is how did I get involved in it? So I mean initially, like, literally, Pancreatic Cancer Action Network had a table at a cancer fair at Kaiser. I remember, like, bum rushing the table with my family and talking to — because why — I say the — and, like, and then they're like, you can volunteer. Was like, oh, cool. Because I did get resources from PanCAN when I was going through my treatment, my initial treatment.

I got, like, a little book about diet nutrition. I got, like, a little book about, like, Whipple because that's how I go — it was. Was a book. And then, and then I just got involved with like the affiliate group. I was the outreach chair.

Then I moved on to the Survivor Council because that was the group recommended. I think I represented a demographic that at the time might not have been entirely, still isn't entirely reflected. And then actually through the Survivor Council, like I did not realize that there was, I guess, patients talking to the scientists and the clinicians isn't always something that happens, right? And then I was able to do speaking engagements, sit on patient advisory councils, which I secretly love doing. I did not realize I would love that so much.

Because it's just sometimes when you're so deep in a topic, I think people miss like the thing that's super obvious, right? And then it's good to just be able to be that voice for patients. And then with my mom passing away, I saw a different kind of side, right? She's in a different healthcare system than I am. Caregiving is the hardest thing on the planet.

I realized, like, I think it's harder than being a patient because in patient, you've come to peace with it. As a caregiver, you might not be getting all the information. Like, we had a whole village around her, right? And you can't, you know, it's — it's not you. Right?

So it's harder — you're seeing somebody go through something. You always like, I have a massive amount of guilt. I thought I should have been able to navigate better. Like, I should have had better information. Like, there's a lot there.

And then there is — I've been speaking of friend networks. Like, we had something where my mother was in hospice, and they're gonna release her from hospice because it was during COVID. And I was able to talk to my friend who literally works in this space in Washington, D.C. on how to navigate something. And it's like, I'm a non — I come from a nonprofit background. I was a tech worker with Oakland, right?

So I didn't think my network was as vast and as amazing as it is. And like, I think all of my friends are amazing and super smart, but like, just being able to say something, people like, no, I can help you with this. Like, it's the release, or just maybe they themselves have gone through it. It's just like words we just didn't know.

Alisyn Camerota: And I know that you are part of the Health Equity Committee and so how does health equity factor into pancreatic cancer, if it does?

Randi Ervin: People tend to use very like academic and big words and framings, but it shows up in very practical and real ways, right? And something they worry about health equity is like, what am I bringing to the table? Like, how have people who look like me or people in my family been treated? And so and how do they trust the system and interact with the system? How am I able to physically get to the location?

That's a transportation issue. Right? Like, what does my care structure look like? I don't have kids myself, but, like, do I have to worry about caregiving? I've been lucky enough to have jobs where I have flexibility, but it's a locked time.

Like, for like you're talking about diagnosis and treatment, like, like before you even know something, you have to get blood work, take time off of work, you need — and that's usually, you know, a nine-to-five during the workday situation. You have to be able to travel to a location. I'm lucky to live in a densely populated area. I myself do not drive, but I can walk to Kaiser. But, you know, so there's all these, like, things in terms of equity.

Like, you know, if you're in rural America, like, you might be driving, like, 500 miles or something. Right? So it's the idea of just knowing how people show up and knowing that a lot of that is very structural and how things are based. Right? So it's like — so the decisions you're making about the school board or about BART or about having roads or about having, like, Wi-Fi access or building, like, actual, like, you know, like infrastructure within your city impact how people can actually interact with healthcare.

And then, of course, just being aware of that, like, in when you're talking to a patient as a clinician or a researcher or as a friend, like listening a little bit, like listening a lot more, right? Because they'll probably tell you that like, hey, like things aren't in a vacuum, right? Like you can have, you can have cancer and also have like depression, anxiety independent of that cancer. And that changes the way in which your scope will be, like how you'll navigate treatment and what resources you need immediately, right? Like you need to get your therapist on board, you need to have a plan, like that was my situation.

And then like, you know, you can have, like I said, like I'm a single woman who does enjoy, like, you know, I like going to get wine and I enjoy hanging out. And something where it's like, can I be honest with you about that? And then how is my —

Alisyn Camerota: access — did you find, to doctors, can you be honest?

Randi Ervin: I am, which is why I would probably never leave my healthcare system because I know I'm pretty lucky right now. It's actually built into the healthcare system that I'm a part of. And so I've been able to be very honest about that. And even when I was seeing a nutritionist, right, like, which I've seen multiple — I — this is actually a very, like, simple health equity thing as I really appreciate it. They ask, like, well, what kind of food do you eat now, and what is your comfort food, and what is your, like, staple food?

And they built from there. And that's very much like culture. Like, that is — that is racial and ethnic. Like, that is, like, we don't all eat the same. And building based on that rather than just being like, you know, you're gonna have, like, you know, tuna salad sandwiches and cottage cheese.

I'm like, I don't even eat that. You know? So, like — so it's like that kind of piece. And it is one of those, like, if you can't get that through your care system, like you want a referral out, you want, like, recommendations out. That's also how insurance comes up, reimbursement comes up, what, like, programs are in place to help you navigate the system and help you actually physically pay for things to find resources that are actually helpful and keep you alive.

Like, better outcomes essentially.

Alisyn Camerota: That's amazing. That's all really eye-opening stuff to think of it through those terms. Randi, what have we missed? What else would you like to say?

Randi Ervin: Oh, I mean, I guess, oh my gosh, thank you for taking the time to let me talk. Like, I mean, I got opinions for days, but I know that there's something I do, I like about, like, Let's Win Pancreatic Cancer, because it's — I like that the stories that they're telling show the people. And I think that's something, I think people tend to think of things in a vacuum or make things very transactional. And in reality, this is one part of you, and it's a part of you that is going to be a part of you forever. Like I think people forget, like survivorship isn't the finish line, right?

And all these advances we were talking about, about like in healthcare, like I'm still here for now and I hope that like ten years from now when whoever gets diagnosed with it will have an easier path than I did. But the idea is it's like you're a survivor as soon as you're diagnosed and your life after that is also impacted. So it's just like, acknowledge that I'm a person. Like, I still have to work because I still have to worry about health insurance. Like, you know, like I use Covered California if I'm like, you know, between jobs.

Like, it's like a very real thing for the rest of my life, and I can't not do it. Like, you also have to worry about your dental care. Right? There's all these other things you just have to start worrying about because of infection. And so and, like, I thought my five-year mark, I was done, and my surgeon and my oncologist was like, “No, girl.”

Like, it's just a random benchmark. And I was like, "Oh, this is my life.” And then but I appreciate groups, organizations like you that show that this is a part of life rather than — and something that will be with you for your entire life but it's not your full life and that you're a human with 800 different layers.

Alisyn Camerota: It's such a great reminder, and it's important to talk to people like you who — yes, it may be part of your life the whole time. That definitely takes a mental adjustment. However, there's still joy, there's still tacos, there's still wine night, there's still volunteering, there's still your beautiful smile. You know, I'm happy, very heartened to hear that it can be managed.

Randi Ervin: Yeah, like it can be managed. But take the break, right, it's a cognitive load. You know, like I'm not gonna lie. Like, actually, like, you know, if your husband — do it at some point, you just need to like step away and just kind of be like, like it's — my day is gone, right? Like all the processing and just like the navigation and just the logistics, man —

Alisyn Camerota: The bureaucracy. For sure, the logistics are really hard, and all the different medications and the bureaucracy and the insurance and all that stuff. But yes, there can still be pockets of joy. Randi Ervin, thank you so much for sharing your story. That was really eye-opening.

It's great to talk to you.

Randi Ervin: Nice to meet you, Alisyn. Thanks so much.

Alisyn Camerota: And thanks so much to our listeners. I'm Alisyn Camerota. I'll see you next time. We also want to thank Revolution Medicines, our sponsor.

Julie Fleshman: Hi, I'm Julie Fleshman, President and CEO of PanCAN. Navigating this journey can feel overwhelming, but you don't have to do it alone.

Be sure to explore the wealth of survivor stories available to you at any time on Let's Win and visit PanCAN's patient services if you need help with anything.

You can find PanCAN at pancan.org and Let's Win at letswinpc.org. Together, PanCAN and Let's Win are committed to guiding you through every step of the pancreatic cancer journey, offering support, information, and hope.

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