Intro: Welcome to Conversations on Cancer, brought to you by the Riverside Cancer Institute, providing answers, debunking myths, and sharing patient stories.

Host: Welcome. We're back today with our intermittent series called the "C" Word, Community Not Cancer, a delve into people's experience as they undertake their diagnosis and treatment of cancer and the experiences they've had and how that can help others. So, today, we have Jason. Welcome, Jason.

Jason W: Nice to meet you.

Host: Jason is a patient of one of my partners, Dr. Hamdan, and had been undergoing care with us for almost three and a half years back in 2022. Jason, can you tell me what started things?

Jason W: I had gone out and went to a Super Bowl party, and I was drinking some bourbon and having a good time. And the next morning, I woke up and I noticed a bloody stool more than enough to scare me. And I went to see a doctor, and then I went and saw Dr. Shaw and got a colonoscopy and he notified me that I did have colon cancer.

So then, after we did the screening for the colon cancer and looked into that, then we also found spots on the liver, which also came to have they said four spots possibly, but then there wound up only being two. The others were like scar tissue. So, we took care of the colon cancer first and resected about six centimeters, I think it was, of the colon. I got that taken care of first, recovered, went on a cancer treatment program. And then, a year later, we wound up doing the liver surgery where we resected part of the liver. And then, the other part, we did an ablation and took care of that part.

Host: Yeah. So for the purpose of everybody else listening to us, what I'll explain is when Jason first presented, the lesions in the liver were in a spot that were unable to be accessed easily for biopsy. And there were some characteristics on the liver, which suggested that this may be benign, but it was hard to tell.

So, a discussion between Dr. Hamdan and your surgeon, Dr. Williams, at that point decided, "Let's take care of the main colon cancer first and deal with that and we'll watch the liver carefully." And, as Jason mentioned, he had the surgery. Things looked overall very good from the results of the surgery. It was quite a very early stage. And Dr. Hamdan did recommend some treatment afterwards to monitor, and then monitored it.

And then, over time, they noticed on serial scans that this lesion in the liver was starting to grow a little bit. So eventually, about a year later, led to biopsy where they were able to get to the biopsy a little bit and determined that, yes, this was part of the original colon cancer at this time. So, made that diagnosis. So, that's a summary of what happened.

So, let me take a step back again, if you don't mind. So, how old were you when this happened?

Jason W: Forty-eight.

Host: Forty-eight. So, how did that hit a 48-year-old when they go to Dr. Shaw and Dr. Shaw comes to you and says you have colon cancer?

Jason W: It was a shock. But seeing what I've seen, I knew something was wrong. I just didn't expect something that drastic already at 48 years old. I knew I didn't have the greatest lifestyle with my work and working all night long, not sleeping and not having the greatest diet. But still at 48, you feel young and feel full of life, and then you get that message that says, "Hey, you need to come see me. We need to talk about the cancer you have."

And then, I came to terms with it pretty fast. It was hard for my wife, but then I came to terms with God and I told him, I was like, "You already have my life predetermined. You know what's going to happen to me." I was like, "But I'm going to fight this all the way until the end." And I say, "I'd much rather have you walk side by side with this fight until the end." I was like, "I will not give up." And from that day, it's been a blessing. I've had no stress, I've had no anxiety. It's just been a walk through life, meeting new people. And God has brought me all these new doctors and nurses and people into my life, and it's been wonderful.

Host: Just wonderful to hear. And so, I'm guessing it didn't come as much of a shock a year later when they talked about the cancer in the liver, or did it?

Jason W: No. When they did the scans, first did the colon, then they did a whole abdomen scan, they found a lot of spots on the liver and they said, "We want to take care of the colon first, and then go onto the liver." But then, the next one was after we took care of the liver and went back and did more scans to see how that was healing, they found another spot on the liver that really wasn't very accessible except for the Y90 radiation treatment. And then, that one had me worried. I was a little nervous because that one's not as easy to treat.

Host: So, what Jason mentioned was he underwent a kind of very, I would say, modern technique of treating cancers in the liver. It's called Y90. What it is, it's a treatment where a special radiologist will navigate the blood vessels, kind of like when a person does a heart catheterization. But instead of going all the way to the heart, they stop in the liver. They find the blood vessels which feed that particular spot where the cancer is . And then, they essentially inject these radioactive beads to kill the cancer from inside. That's the Y90 treatment.

Jason W: It's very interesting when Dr. Hamdan and I first started talking about the treatment. I went to Northwestern, I went to Rush Hospital. Talked to different doctors up there and the procedures they would do. I just wanted to be more informed of other doctor's opinions and different techniques that could be done and what I thought I'd be most comfortable with.

One doctor told me he wanted to take 60% of my liver out, and I thought that was excessive. I was like, "Can we just start with doing the resection and ablation? And then if I have to, go remove 60% of my liver from there, because it regenerates." And Dr. Hamdan said yes. And then, he directed me up to Dr. Bilimoria up at Northwest Hospital and he was great. He answered all our questions. He had screens and slides and pictures and everything. He was just very informative and we were very comfortable and went to him.

Host: Yeah. Dr. Bilimoria is a really good doctor. Side note, he was one of my close friends the first two years of college.

Jason W: Oh yeah? Nice.

Host: Yeah. Anyway, so that's great. I mean, so this is another piece of advice to patients, is make sure you're comfortable with how are you being taken care of. You know, just because you come to the first oncology doctor doesn't mean you have to do what they say. Get some advice, get opinions. As an oncologist myself, I think it's very valuable to get opinions. Because, one, you want to make sure the patient is comfortable with what you plan to do, and it's also learning experience for us as doctors too to find out, okay, what's happening in kind of the academic world. So, sometimes I can adjust how we manage things. So I'm glad you did that.

Jason W: Yes. And Dr. Hamdan also told me when I first got diagnosed with the cancer, and I'm reading all these websites and what do I got, what are treatments and this and that. And he told me, "Relax, don't worry." He goes, "A lot of that stuff you're reading is outdated." He goes, "So most of that stuff you can throw out the window. It's old. It's seven years old." There's new techniques and stuff's come out since then. And that's more reassuring to hear that from the doctors. Like it's all gloom and doom. It's not. It was just you got to be open-minded.

Host: Seven years is an eternity in cancer treatment lately. So, there are significant changes happening all the time. So, yes, Dr. Hamdan is right. Tell us since then, so you've been through management with the Y90, you've been through Dr. Bilimoria's management as well. But you've had some step backwards, I guess, in terms of the cancer progressing. And from what I see is you've been through several different treatments,

Jason W: Correct. Correct. I did two different pumps. The FOLFOX was the first one, and I'd had some side effects a little bit, the cramping and stuff. But then, just talking with the doctors and I was like, "Well, we can do this and this." And I wouldn't have known just taking tonic water gets rid of the cramps in your stomach. But I was like, if I would've known that off the bat, I would've been great. I was like, "Well, maybe this is just a little side effect." I mean, it really didn't hurt, but maybe one time. But always now if I have a little thing, I tell the doctor and, "Well, we can work on that." And then, we did the FOLFIRI

Host: .Well, actually, I think after you finished the FOLFOX, what I read is you went onto a maintenance course of capecitabine pill, is chemotherapy pill.

Jason W: And that gave hard side effects. Yeah, with real bad neuropathy in my hands and fingers, where my hands and feet would turn as red as Santa's suit. And they would burn and peel, and then he managed that. And then, we went to the FOLFIRI. And it's just nice to know there's options. It's just not this one option, that's it.

Host: And just to reassure our patients, the redness in the hands and the peeling, it is a side effect. But as he mentioned, Dr. Hamdan did adjust things to make it more manageable. And that's what we do. It's about treating the cancer, but treating the person. So, we make adjustments. It's not one-size-fits-all.

And then, as you mentioned, the cancer came back, so we switched to the FOLFIRI. And, even after that, that did not keep things under control. But now, you've been on Lonsurf with bevacizumab. And Lonsurf is another kind of chemotherapy pill along with an immunotherapy that works alongside it, okay? And you've been doing well on that

Jason W: .I have been. I've been doing really well.

Host: Tell me how long you've been on that.

Jason W: Ever since-- oh, I think it was right before the Y90. So, I've been on it for over a year. I just had the Y90 last October 3rd. And I'll get my scan-- october 19th will be my year scan.

Host: Coming up. Okay.

Jason W: So, I'm anxious to see that one. Then, things have gone well. And they've seen things disappear in the liver around that Y90 area that they treated and it looks like scar tissue now. And just things are going great and I can tolerate the medicine. And I've heard stories of people don't tolerate it. People do tolerate it. Just like the Y90, people tolerate it great, people don't. I did not tolerate it very well the first five to seven days. The first four days, I could not get comfortable anywhere, sitting, laying down, squatting, nothing. But I'll take the four or five days for a lifetime.

Host: And the last thing in terms of your treatment that I'll mention is that recently you had to have a non-cancer-related surgery. So, you had to be off your treatment for about a month and a half or so, correct?

Jason W: Correct, yes. So, I had the neck surgery, the herniated disc replacement, yes.

Host: Yeah. So, do you ever get anxious when you're off medicine?

Jason W: No. No. It's a nice little break. But I notice when I go back on it, it can be a little more difficult. It reacts to the body a little different until the body gets used to it again. And then, I feel better. But I noticed when I got the cancer, I changed my lifestyle, my eating, I gave up drinking and started doing more exercises and it all helps. It all makes you feel better. Mostly the diet. The diet is the big thing. Trying to stay away from the sugar. And just eating healthier. And I'm not run down. I feel more energy. As long as I eat better, the medication seems to not affect me. It helps.

Host: That's interesting. So, you know, you don't want to make light of it. But once you got cancer, you actually got healthier and you feel better.

Jason W: I got better looking, because everybody kept telling me, "Oh, you look good, you look great." I was like, "Nobody told me that before I had cancer." I was like, "Too I had to have cancer for people to tell me that."

Host: So, tell me, overall, what's life like now for you in terms of imagining your cancer. You're continuing with life. What is life for you?

Jason W: Before I had cancer, it was all about taking care of my family and my kids, watching them grow up. And then, I get the cancer word, and then my next thing is how long am I going to be here?

That's the first thing I asked Dr. Hamdan, I was like, "Do I have six weeks? Do I have six months? Six years?" I was like, "What's the prognosis?" I was like, "Where are we going to go from here?" I want to see my kids graduate high school. Then, I want to see them graduate college. I want to watch both of them, get married, have kids. I want to walk my daughter down the aisle. I want to do all those special things. And he says, "Don't worry." He goes, "You're going to be around for many milestones." And just to have that reassurance, it makes you fight harder. And the belief in God and having trust in his plan, it's even that much better. But I've got my kids through high school. We got them through college. I'm not going to say it was easy, but I've been blessed, and I've had a pretty easy go at it since I've been diagnosed. I've come across great doctors, great nurses, great people in my life. The friends I've gotten throughout my life have always been there and they've been there even more. And the family's there. You can't ask for better support.

Host: So, that's your community?

Jason W: Yep. And this became one of my biggest communities just coming here every two weeks. And I have no fears.

Host: You've been coming here every two weeks now for almost four years. What other advice do you have for people in terms of we talked about changing lifestyle and doing all that , but in approaching your community for supporting things? Do you approach them or do they kind of--

Jason W: in this past year, I've had five friends, people that I've known pass away from cancer, three from work. And two of them were younger men than me. And I've been blessed that my kids are old enough that they could take care of themselves if something does happen to me. But them gentlemen that passed away have toddlers and a kid that's 10. And we talked weekly, and we're each other's support group. Because you can talk to people that don't have cancer. They want to understand, but they don't. They don't understand the struggles and the fight. But then, when you talk with somebody who does have cancer, it means a little more. And just being in touch with them and helping them get through tough times, or if they have questions, "Hey, what is your doctor recommending because I'm doing this and doing that." And the one gentleman, he was 36-year-old, he's got two young kids and he had lung cancer fill a hundred percent of his lungs. And it went away, and he was better, but he was still doing the pump every two weeks. And he was going to do that for the rest of his life. And we'd see each other up in Chicago. I mean, our job, we'd cross and we'd talk, or i'd see him down in Decatur. We would talk, and it's just nice to know there's somebody there. And I was like, "You can call me anytime of day." It's just nice to have a support system with people who understand. And then, they pass away and you'll do anything for that family. It doesn't matter if you've known them two weeks, you'll do anything for that family who is dealing with the cancer.

Host: And it's wonderful that you have community behind you from the start. It's wonderful that you created more community. And like I said, that helps people get through this a little bit easier.

Jason W: Yep. The one that I worked with, he has a son that was 10 years old and we'd talk all the time and we'd talk going to doctor's appointments. His mom would be on the line, on speaker phone and we'd talk. We've gotten a bond and talking to her all the time. And we set up a fundraiser and raise money for his kid just to go to college. It's like, "Save this money. Put in a college account. Nothing but college." So, he's taken care of. He's 10 years old. By the time he goes to college, it's going to be a nice little gift for him to have. And just being able to help him do that. And the community at UPS come out and his friends from his area where he grew up come out, and I couldn't be there for that fundraiser. I was with my boy at his birthday party away at school. And everybody would send me pictures and just to see the gymnasium that they filled and the money that they raised. It's just nice to know that there's people that care that much for people that are going through hard times.

Host: Yes. Heartwarming is kind of a cliche word, but it is.

Jason W: Yeah. So, I mean, there's no easy days with cancer. Some days are easier than others. I was like, "Don't get discouraged, you'll have better days." And that's the way I look at it. And every day is a blessing. Every sunrise, every sunset is beautiful.

Host: Thank you for that, Jason.

Jason W: I'm just glad that we can have a forum like this where maybe we can help somebody that's not having a good day and maybe give them hope or brighten their day somehow.

Host: Well, thank you so much Jason. It was wonderful to have you. Wonderful to learn about you . And to our community, this was the "C" Word, Community Not Cancer. And we hope you join us for future episodes too.