Transcription:
One Patients Journey with Colorectal Cancer

Prakash Chandran (Host):  Each year, more than 150,000 Americans are diagnosed with colorectal cancer, making it the third most common cancer in both men and women in the United States. So, today we will be having a unique conversation about one patient's journey with colorectal cancer, including diagnosis, treatment, and life afterwards. Joining us today, is Dr. Lorenc Malellari, a Colorectal Surgeon for Dignity Health, along with his patient, Gary Zuber and Gary's wife, Karen Zuber. This is Hello Healthy, a Dignity Health podcast. My name is Prakash Chandran. So, first of all, it is great to have all three of you here today. Gary, I'd love to have you start by telling us a little bit about you and your life before colorectal cancer.

Gary Zuber (Guest): Sure. Yeah. Well, I had already been struggling with a neurological disease, an auto-immune disease similar to MS, I guess you would say. So, I was sort of adjusting to that still in my life and things weren't great, but I was getting along and making the best of it. And then it was like a sucker punch. I had been having symptoms probably for five years. But because I wasn't aware of what was going on. I thought it was one thing and several years down the road, it turned out to be cancer. But overall, life was good. And then this came up and it like I said, it was a sucker punch and that changed pretty much life forever.

Host: So, Gary, just to expand on that a little bit, you mentioned some of the symptoms you were experiencing. Can you talk a little bit more about those symptoms and maybe tell us how old you were at the time?

Gary: Sure, I was about, gosh, 54 probably 53. And I had been for a while, losing weight. Didn't understand why, and getting sick, you know, flu bugs and stuff like that, where I had never really done that before. And I, I mean, it was severe. When I'd catch a cold, it would knock me down and I didn't understand why. You know, I was a healthy guy, I was still somewhat in shape, ate good. But boy, it would just take the rug out from under me. And then I started bleeding rectally. And I would inform my doctor of this, but it was like, well, you just have hemorrhoids. And I kept saying, well, you know, it's bad. And again, I didn't understand, or I don't know how hemorrhoids work.

Okay. I just figured, that's a normal thing for people to have and that's what I'm stuck with. But then it got to the point where I was hemorrhaging. So, I went in to get a colonoscopy and they just came back with the diagnosis that I had very bad hemorrhoids. So, I thought, okay, well this is life, got to deal with it and live with it. And then it got even worse. And they had told me after the colonoscopy that well you can go in to have them surgically removed. And so, it was really interfering in my life and embarrassing and so forth. And I had to wear protection and whatnot anyway. So, it got to the point where surgery was an option for me.

And that's when I went to see Dr. Malellari, and we proceeded with that. And while he was in there performing that surgery, he found a tumor and then things really changed in life.

Karen Zuber (Guest): Yeah, I have, I'd like to add a little bit to that if I can. Gary had been having the bleeding and the weight loss for some time. And as a wife, you notice those kinds of things. And I began to be really afraid that he did have cancer. And I can remember, going on a walk with my daughter-in-law and just telling her that I was really afraid that Gary had cancer with all the symptoms and everything that was going on.

So, when we went to see Dr. Malellari just to begin to discuss the possibility of a hemorrhoidectomy, he did mention right away that he thought it was going to be something more than just the hemorrhoids, just based on the symptoms that Gary was describing. And so when we went in, for the surgery, when he went in for the surgery, you know, and it's always we when you're a partner, but when he went in for the surgery, when he came out and doctor explained that he had seen a large tumor in there. And as much as your heart and mind wants to prepare for something like that, as soon as he mentioned that he was sending it for a biopsy, I mean, your heart just really goes numb. There's not really any way to prepare for something like that. And while the doctor was really kind and really patient, you really - you're just heart just goes completely numb.

You don't have any questions that you want to ask and doctor did a great job explaining everything to us. I think Gary was probably a little bit more sedated and didn't understand what was going on when he began talking about biopsy and things like that. But in my heart, I knew right away that it was cancer, but it's not something that you can process right away.

Host: Yes, I can completely understand that. And it is especially frustrating because you have been experiencing these symptoms for so long and it took going kind of the surgical route to discover what was going on. So, Dr. Malellari, I want to move on to you. Tell us just a little bit about yourself and how you initially came to meet, Gary and Karen.

Lorenc Malellari, MD, FACS, FASCRS (Guest): Yes. Prakash, and thank you for having us here today. As Gary and Karen mentioned, his story is a little complicated because he was suffering from the symptoms for many years, actually and the key point on when I evaluated Gary in the office was the fact that his bleeding was profuse, was constant and he was losing weight.

And as you mentioned earlier, he has some other medical issues that may contribute to some of the symptoms that just didn't quite fit with hemorrhoidal disease source of all these problems. And Karen probably remembers when I first saw them in the office that I doubted that the hemorrhoidectomy would be the solution to this problem because the symptoms didn't quite fit with that diagnosis.

But initial examination did note hemorrhoids on his exam and nine times out of 10 bleeding per rectum, it is hemorrhoids in most people. So, we proceeded with an examination under anesthesia and immediately looking deep in Gary's rectum over there then I found a mass which visually was consistent with cancer, but obviously we had to confirm it with a biopsy. The story then made sense. Once that piece of information came about that every symptom that Gary was experiencing and was having kind of fit with what I was seeing in the OR.

Host: Karen, you were just talking about that heart sinking moment when you knew the tumor had to be sent in for a biopsy. I'd love to learn a little bit more about what happened next and really the journey that you went through prior to treatment, just knowing that it could be cancer and you were going to find out pretty soon.

Karen: You know, when we waited for the diagnosis, I don't even remember how long it took to get it, but knowing that I had suspected cancer all along, that waiting, it was terribly long too wait for that diagnosis. When we went in for the diagnosis, we had brought our son with us because I knew that in my heart, I knew what it was. And that waiting process was extremely hard. While we were waiting for the treatment, I began to research it. So, after we met with Dr. Malellari, he gave us the diagnosis. He gave us the treatment plan. I began researching right away what life was going to be like for Gary. I have a family member that has an ostomy. And so to me, understanding what he was going to go through was critically important to be able to help him go through the journey.

You know, really the waiting for the treatment was probably the hardest part for me. You're very apprehensive. You're very nervous. You're very edgy waiting for that. And the waiting for treatment to me was terrible. And I have to be honest, I was terrible. Dr. Malellari can probably tell you that I was on edge every time we met and it was that I got to get him treated. I want to get him treated. And just knowing that he'd had it in there for so long, I wanted to get it out of there as fast as I could. I was just terrified.

Host: So, Gary it's, obviously interesting hearing Karen's perspective. You had people that were there and that were supporting you. But going through it yourself, talk to us a little bit about how you were feeling, prior to treatment and what it was like for you when Dr. Malellari said that they needed to send the tumor in for biopsy.

Gary: Well, if anybody else who is going through this or is going to get results or whatever through their doctor, I would strongly suggest bringing somebody with you, because you just can't absorb everything that's being told to you and it's almost like you put up a wall because you don't want to accept this information. So, bring somebody with you that can listen and understand. Because in my case, anyway, like I said, I put up a wall. I didn't want to hear anything. I instantly got mad, not at Dr. Malellari, of course, but just at the situation. I was mad because that only happens to other people, not me, you know? And I guess that's my defense throughout life. You learn that's your coping mechanism, let's say. But in a sense, it helped me get through the whole process. Again, bring somebody in there with you to digest what's being told to you.

Host: Dr. Malellari, I'd like to move to you now. Can you tell us a little bit just around how colorectal cancer is typically treated and then I'd love to hear a little bit more about Gary's treatment plan specifically?

Dr. Malellari: Yes, absolutely. So, as you mentioned at the beginning, colorectal cancer is a very common cancer, unfortunately. It's the third most diagnosed cancer in United States, but it's the second leading cause of cancer related deaths in the United States, which is an eyeopening number when you hear it. But it's a cancer that we know exactly where it occurs, how it occurs and how to find it. There's numerous tests that are currently available to test and identify colorectal cancer. The one that most people are at least have heard about is colonoscopy, which is basically placement of a camera inside of the rectum and colon and a visual evaluation of that area.

There's other tests that include stool tests where you send a sample to the lab for testing and there's also radiological tests or what are called virtual colonoscopies, where we use images from a CAT scan machine to look for abnormalities in the colon and the rectum area. The difference between some of these tests vary between ability to diagnose the problem and also treat them or manage the problem. Colonoscopy is basically the gold standard for it is because it doesn't just identify the abnormality, but can also either biopsy or remove the lesion or the tumor. The other tests will be basically diagnostic only.

As far as Gary is concerned, his pathway was a bit difficult because he had an actually had a screening test done. I think it was about a year or so before I met him which had been negative and it's a little unusual to have that happen and then develop cancer a year later. The other aspect of this is that Gary was fairly young for getting this diagnosis. But the majority of patients that we diagnose with colorectal cancers are in their late fifties, early sixties, at least in the United States. It kind of ended up being a little on the younger side, but the fact that the initial screening test was negative, kind of threw us off a little bit as far as making the diagnosis.

As far as the treatment plan that proceeded, once we identified the tumor, Gary's cancer was located in the rectum. So, this was basically a rectal cancer and treatment plan included evaluating the extent of a cancer, what's called staging the cancer at that point. And because of the results of that staging workup, Gary required treatment for the cancer, namely chemotherapy and radiation treatment prior to proceeding with surgical resection of the rectum where the cancer was located. And this is not a treatment that happens immediately. It doesn't take a couple of days or a week or even a month to complete. It's a bit of a long road to go through all the steps of the treatment and patience is obviously needed. But as you heard, Karen and Gary mention, it's difficult to do that when you're dealing with a family member or with your own body especially. So it's always important to have that support mechanism and support system around you to help you go through this.

Host: Gary now that you are on the other side of this treatment, which sounds like it was a little bit longer than a normal treatment might be, share a little bit about what your life is like now. And really just anything that you'd like the general public to know about your experience.

Gary: At the time, going through the treatment, there were times when you know, attitude plays a huge portion in going through this. For the most part, I tried to be upbeat, but there was times that it was like, just take me now. It was so miserable. But looking back, I have a life, I'm alive because of the treatment and so forth that I went through. I can see tomorrow. We have grandchildren and every day is precious. I mean, there are still bumps in the road. I won't lie. It's not just a walk in the park.

There's still obstacles, but I wouldn't trade it for the alternative that's for sure. I'm able to do things. I'm able to work out again. I'm able to go on little hikes. Just going out to dinner with my wife or whatever. I have life and that can't be replaced.

Karen: I'd like to, like to add just briefly to that. When you go through the process, it just seems like it's going to be something that's going to alter your life permanently, but it really does take about a year to get adjusted the changes in your body. And that doesn't mean that it's perfect after that, but really just be patient with yourself. Be patient with your spouse as they go through it. The adjustment to the surgery was major. It was a significant change for Gary's life. And just being patient. My advice would be get your checks, get your screens done. If your doctor recommends it, get your screens done. And if something doesn't seem right. Go back to your doctor. If you're still having trouble and you don't think that that maybe your body's not working the way it should just go back and see your doctor, get your, scans.

And this is something that it's avoidable. If you catch it early, you can avoid the whole surgery. But if you do have to have surgery, life does return to near normal. I think Gary and I are closer after this process. And some people are so afraid what it's going to do to their relationship. It hasn't impacted ours negatively.

So, Dr. Malellari given what you've learned from your many years of experience, as well as the experience you went through with Gary and Karen, what would you like the community to know about colorectal cancer?

Dr. Malellari: You know, Prakash, colorectal cancer is one of those diseases that it's preventable. It's one of those diseases that unfortunately it's much more common than people realize. But it's one of the diseases that we cannot just treat, but hopefully prevent. And Karen and Gary mentioned earlier, we gotta be able to make colorectal cancer a topic of conversation among our community.

Because that is what's going to make it normal to get a colonoscopy or to get screened for it. There's a lot of apprehensions that I see on my patients as well, but getting screened for colorectal cancer because, they think they're too young or then don't have any family history of the cancer. But the problem with this cancer is, it doesn't give you any symptoms until it is usually fairly advanced. And you don't have to have family history to get this cancer. So, screening is really the most important thing that I'd like to add to this is make talking about this particular cancer normal.

It's not a very pleasant conversation to have at a barbecue, at a dinner table, but bring it up with your family members, with your friends. The fact that getting screened for colorectal cancer is a normal part of staying healthy, not just becoming healthy after a problem occurs, but staying healthy and normalize getting screened for it.

It is really. And I'm sure Gary and Karen can chime in as far as how difficult and problematic their colonoscopies and their testings are, but they really are not as difficult or as problematic as most people think they are. Most of my patients who go through their screening tests, come back to me afterwards and saying, I wish I'd done this sooner because this was not as uncomfortable or difficult to do as what I've heard online or what friends have told me about. That would be my last word here is, get screened. That is what's going to make a difference.

Host: Gary, I'd actually like to give you the final word. After everything that you've been through, and I really appreciate you going into the detail that you have today and sharing what you have. What is one thing that you know now that maybe you wish you would've known back then or something you might've done differently back then?

Gary: Like Dr. Malellari and my wife Karen had been saying is getting screened. You know, I had been screened years and years and years ago, and I had a bad experience. I actually ended up in the ER, but don't let that stop you from continuing. Had I continued, I wouldn't be in the boat I'm in right now. And the other thing is I just took it for granted that okay, well, this is hemorrhoids. This is what a lot of people get, my dad had it. So, I guess it just runs in the family. And then I just accepted that and didn't pursue it until it was too late. But if there's an abnormality in your body, if something is just not normal, get it checked, get it checked sooner than later, because sometimes later isn't such a good idea. You know, later is sometimes too late. Had I pursued it, had I not had excuses for not pursuing it again like I said, I might not be in the boat I'm in right now.

Host: Well, Dr. Malellari, Gary, and Karen, this has been truly insightful. And I really appreciate your time today and just being so open about things. I think something to take away is obviously get screened, you know, especially if you're over 50 or late fifties and you're feeling that there's something off, it's okay to get screened early and often. Because you know, your body the best. So, thank you so much. I think so many people will take so much from this conversation. I truly appreciate it. That's Dr. Lorenc Malellari, a Colorectal Surgeon for Dignity Health, along with his patient, Gary Zuber and Gary's wife, Karen Zuber.

For more information, head to dignityhealth.org/bakersfield. If you found this podcast helpful, please share it on your social channels and be sure to check out the entire podcast library for topics of interest to you. Thanks for checking out this episode of Hello Healthy. My name is Prakash Chandran. And we'll talk next time.