Transcript of Episode 3 of Why Nutrition is So Important for Bladder Cancer Patients with Dr. Jill Hamilton-Reeves

Click here to listen to the podcast. Voice Over: This is Bladder Cancer Matters, the podcast for bladder cancer patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network, otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit bcan.org. Rick Bangs: We’re back with the third of three episodes of how diet and nutrition help bladder cancer patients before, during and after bladder cancer treatment with Dr. Jill Hamilton-Reeves. Dr. Jill Hamilton-Reeves: What that allowed for a person like me that’s a nutritionist, is there were people on that team that said, we need to prioritize feeding people as soon as possible. And the way to do that is to follow the shortlist of things, as far as how you manage pain, how you prepare the gut for surgery, and then even some medications that can help preserve the gut function even when you’re on pain medication. And that just started reaching urologists across the nation. It was one of those the universe aligned and the stars aligned things, right at the time that my co-PI and chair, Dr. Holzbeierlein, had told me about this problem. And I’m like, “Hey, have you ever thought about feeding the patients?” And he was like, “You know, we actually have this new pathway where I think they could probably eat after surgery and right up to surgery.” And I thought, okay then. Dr. Jill Hamilton-Reeves: In all my wisdom, I thought if you just feed these people, they’re going to do better. But that wasn’t a very exciting question. So instead, I looked at some other literature, especially in gut surgeries, and found that there was a formulation that had some extra nutrients in it to support the immune system. And I thought, well, that sounds cool, let’s see if that works any better than like a standard oral nutrition supplement and compare the two, and feed them both before surgery and also after surgery. And right in the middle of that pilot study, a study came out by [inaudible 00:35:07], that they had kind of come up with the same idea, but they didn’t run a randomized trial like we did. They actually gave some of the patients this immuno-nutrition and others they didn’t. And so, they just went back retrospectively and then compared it how they did. And they found that the people that had those extra nutrients were doing better. They had fewer complications and fewer infections. And that came out literally like a year or two before our study ended. Dr. Jill Hamilton-Reeves: And I thought, oh, I wonder if we’re going to find something. We have some patients that are doing great and some patients that aren’t, but I don’t know who’s who because it’s randomized and it’s blinded. And then we got our data and we found that the people that had the drink with the extra nutrients for immune function, they had lower infections, lower rates of infections, and then they tended to have lower complication rates. And then the part that was really, as a scientist, that’s a little bit nerdy. The really cool thing was we looked at how the immune system evolved around the time of surgery, and then compare that with nutrients, nutrient levels in the blood. And essentially, what we found was that the people that had the drinks with the extra nutrients in it had a less extreme immune response to surgery. Dr. Jill Hamilton-Reeves: You want an immune response. But it was the people that didn’t have these extra nutrients, they almost overreacted, their immune system overreacted. And then it took a while for the inflammation to go away. And because of that, then it ate away at their muscle a little bit more. And then the people that had the extra nutrients, even though they have the same calories and protein that we gave them, those people they had the immune response but it wasn’t as dramatic of a response. Their inflammation resolved a little bit quicker and their muscle held on a little bit better. But this was a super small study, and it was enough to get us excited, and enough for me to talk with you and talk with people that run multi-site national trials. We have that trial open now. So, if people are listening and they’re going in for this surgery, ask them if their center is participating in the swab trial. They might know it as S1600, if you ask if it’s there’s a nutrition trial for cystectomy, that might also get you there. Dr. Jill Hamilton-Reeves: I think that’s one thing that stay posted. If you can participate in the trial, that’d be awesome, we’d love to have you involved. But I also think that coming back to the sarcopenia piece, you said that they talked about making sure you have enough muscle. I had given a stat before for 50% of people that came to chemotherapy that were sarcopenic, well, after this surgery, the data that we have suggests that 81% of patients are sarcopenic. And so, the problem with that is that when you look down the line, it’s not just that descriptor of ooh, they lost some muscle and some function. Five years later, those people had lower overall survival and lower cancer specific survival. So we really want to keep muscle mass on and muscle function. Dr. Jill Hamilton-Reeves: So your person was right. Even though not everything was perfect for you, I mean, look how great you’re doing. Rick Bangs: Yes, but I still remember the jello before and after surgery. Not with fondness, although I will say jello tasted a lot better when I hadn’t had any food. I love the fact that we’ve kind of learned from other contexts, not just bladder cancer, but from other contexts where they’re doing similar surgeries, and kind of brought this over, I think that’s really exciting and amazing. Rick Bangs: So let’s talk about somebody who’s had surgery and any nutritional guidance that you can give them for right after the surgery while they’re in the hospital or going home. We know that the body is adjusting, the body’s adjusting to losing and relocating that bowel. There may be weight loss we already talked about, I’d lost 18 pounds. And this bowel that’s been removed is now being used to either hold and or transfer urine. So what kind of nutritional guidance do you have for those patients? Dr. Jill Hamilton-Reeves: I think first of all, realize what your body has been through, and the poor bowel has been rearranged, and it’s usually kind of angry. One of the things that we face a lot is what we call ileus. And what ileus is when we are cut open, the body sees that as trauma as it should. We elect to do that in getting care, and yet the body is like, oh my gosh, what just happened? And so, a natural response, if you think about days where people were fighting with daggers and what have you, if you get stabbed in the abdomen, you don’t want to spread those microorganisms all over the body. And so, the natural response is that the gut just shuts down. It just stops contracting and moving contents through, it’s like stunned. Dr. Jill Hamilton-Reeves: And essentially, that’s what happens to people after they’ve been cut open and their intestines have been rearranged, is the gut is just like, I’m not moving. I won’t do it. And so, the thought that we had way back in the day was we just have to wait until the gut starts moving again. Well, that was actually, it was well-intentioned but ill-informed, because it turns out that feeding the gut within 24 hours of surgery, very gently, things that are easy to digest, we use our nutrition drinks that are higher protein, kind of condensed calories, not overly sweet, and gently getting the gut working again, very slowly, very gently, sips at a time, and waking up the gut. Thinking of as gentle as you wake up, a toddler that you don’t want to have a temper tantrum on you, is just super slow and gentle re-feeding of the gut. And it’s amazing how much better people do if they can get that food in right away. Dr. Jill Hamilton-Reeves: I would say most high volume practices are feeding people right away. However, if they’re not using the ERAS pathways or if they were trained a long time ago and they haven’t really been keeping up at conferences, they may not know that. But if you know it and you’re the patient, you can have your family members bring in some nutrition supplements, drinks, and you can slowly sip on them afterwards. So I think that’s one thing. Dr. Jill Hamilton-Reeves: Now the other part that a lot of our patients have problems with and maybe you can share a little bit is that the gut gets a little confused about whether it’s going to have diarrhea or constipation, and people are swaying back and forth. And it’s so frustrating to them. And so, I think that is a good time to let your physician know because you’re already going through so much in getting used to the new normal. But if you have a dietician involved that can kind of help you manage those swings of constipation to diarrhea using foods, and maybe a little bit of supplements with a physician involved, the problem is sometimes people go right to supplements and it makes people go from one extreme to the other extreme and back. Dr. Jill Hamilton-Reeves: And so, if you’re also using foods and hydration along with some cautious and prudent use of those supplements and really understanding how they work, the kind of diarrhea you’re having, and then using a supplement that’s best for that kind, what kind of constipation you’re having, and choosing foods and supplements for that kind, then people do a lot better. So, I guess what I’m trying to say is don’t suffer in silence and there’s lots of experts out there to help you and it’s okay to ask for a dietitian to be involved with your gut care. Dr. Jill Hamilton-Reeves: I think I’ve definitely driven home the point that you need to stay on top of eating, a lot of our guys, even if they haven’t had chemotherapy, you mentioned how the intestine is then used to route urine out the body. I’ve been told by our surgeons that it varies, the length of time varies. But for a very short period of time, that intestinal tissue is still absorptive. And so, that can really mess with a person’s pH balance and then also just the trauma I think somehow it affects people’s taste, because I’ve had people that never had chemotherapy tell me about taste changes that sounds so much like chemotherapy, like metallic and things just tasting weird and that type of thing. And so, I just want to normalize that, and again, advocate for yourself to get some help from a dietitian to stay on top of that and try to keep eating. Dr. Jill Hamilton-Reeves: And then the last thing is kind of looking down the line, renal impairment can sometimes be an issue after the surgery because chemotherapy is kind of hard on the kidneys. It’s just something that people have kind of a predisposition to having weaker kidneys, it’s something to kind of keep an eye on. Electrolyte abnormalities from diarrhea in particular can be an issue. And so, really kind of staying on top of those things. Speaking up when you don’t feel right, staying hydrated. And then I think we’ll talk about long term stuff later. Do you have any questions or comments kind of based on your own experience, Rick? Rick Bangs: I would just say that my digestive system was definitely confused as you pointed out. And the guardrail thing was something I experienced. My mother has a little bit of nutrition background so I knew enough to kind of work toward foods that fell into the, if you’ve got diarrhea, eat this, if you’re constipated, eat that. And I remember going guardrail to guardrail on what I was eating for, it was actually for a few weeks. So, fortunately, I could get some guidance from my mother. But what if I had wanted a nutrition consult? How do I access a dietician? Dr. Jill Hamilton-Reeves: If you’re at a hospital or health facility that is a cancer center and accredited, they’re required to have a dietician on staff. And so, it might be as simple as just asking to meet with that person. If you’re in more of a community setting and you’ve asked and kind of, and that hasn’t worked out the way you wanted there, you can search for CSOs, which is the credential that I have that’s for a board certified in oncology nutrition. And you could Google that. There’s a website that you can go to and put what state you live in and that will tell you where the CSOs are. And those are people that have some advanced practice in nutrition and cancer, and they would know how to manage surgical complications and how to manage chemotherapy complications, and that type of thing. Rick Bangs: Great, great. Al right, so now, after we get through the kind of post surgery recovery period, now I’m in kind of this long term, I’ve had my radical cystectomy, but I’m in more of a long term situation, what kind of guidance do you have for those patients? Dr. Jill Hamilton-Reeves: Because a portion of the ilium is used to either route urine out of the body or a larger portion is used to create a neobladder, there is a risk of B12 deficiency. I think that more surgeons are aware of this when you come in for an annual checkup and monitoring. But again, I don’t think it hurts to just come armed with knowledge and say, hey, are we going to be supplementing me with B12 or monitoring B12 because I’ve heard that that’s more of a risk? You’re totally within bounds to ask for those things. Dr. Jill Hamilton-Reeves: There’s data that would suggest that sometimes bone health is compromised after the surgery. And whether that’s due to metabolic changes from the surgery or the big swing of energy needs from the surgery, but then it starts borrowing from the bone. I don’t think we know exactly what the root cause is, but the potential way to stave off those problems is to make sure that your vitamin D levels are normal range, and you’re getting adequate calcium through the diet and probably some supplementation as well, just to make sure that frame is nice and sturdy. The bones are good, you want the bones to be good. Dr. Jill Hamilton-Reeves: And then I keep talking about preserving muscle, I’m sure I’m sounding like a broken record right now. You’ll likely lose some muscle after this surgery, just kind of want to normalize that. And so kind of having a plan as you’re starting to feel better to incorporate movement into your day. Movement that’s good for you, that’s fun, that’s like recess, that’s out in nature. Just to kind of get your muscles functioning and communicating. And then making sure that you have adequate protein in your diet. There’s some really interesting data in older adults that consuming protein in boluses, bolus is like a fancy nutrition word for kind of a bigger dose. So like a 20 gram to 40 gram dose a few times a day can help people preserve their muscle mass, even if they aren’t doing a weightlifting program. It’s just a matter of making sure that you’re not diving into your muscle to make up for what you need for the day by making sure it’s usually just available. Dr. Jill Hamilton-Reeves: So I think that’s kind of interesting data. Some people are looking at to even using creatine or things like that afterwards. Thinking about, sometimes people become hypogonadal from the huge stress of this. So, I think it’s legitimate to ask like, hey, now that I’m on the other side of the surgery, can we look and see if my testosterone levels are in normal range? That might be something that you can kind of help correct. Again, get your physiology working together for healing and for preserving muscle mass. There’s always a bunch of information. Was that solid enough with take home messages or all over the place? Rick Bangs: I think you’ve raised the importance of kind of asking about some of these things, particularly if you’re getting local care, you’ve gone to the major city to get your treatment, and now you’re back in local care and make sure you’re working with primary care. And there’s a specific one that I was really glad to hear you talk about was the bone health because bladder cancer is three to one male female. And so there’s so many men, and bone health is not something I think that’s, based on what I’ve heard, it’s not well studied in men. So just asking the question as to whether or not that should be, a look should be taken there is I think an important thing to bring up. Dr. Jill Hamilton-Reeves: Yeah, absolutely. And I do think that both genders here are at risk for their bones becoming more fragile. And you’re right, I think just the lifetime story of thinking about building your bones as a woman, it’s something that I heard all the time, but I work with men that have prostate cancer too, and when they go to androgen deprivation therapy and they’re told their bones are going to suffer, like what, what do you mean? I’m glad that you raised that. Rick Bangs: Any guidance on preventing recurrence of bladder cancer or even preventing bladder cancer from starting if that were possible? Dr. Jill Hamilton-Reeves: Yeah. The whole like, could we just keep cancer from even happening would just be awesome. I think it’s also important to know, as people are listening that, there’s a genetic aspect to cancer, and sometimes we’re just given kind of a crummy hand. And even if you did everything right, you still find yourself there. And that’s nothing to ever blame yourself for your choices. And even people that may be engaged in a riskier type of occupation or health behavior and you find yourself with cancer, I think just focusing on the messages of today and on what are the things that I can control. So I just kind of wanted to start off with that piece of advice or guidance. Dr. Jill Hamilton-Reeves: As far as data, the strongest association is really smoking. So smoking definitely increases the risk of bladder cancer like six times higher than people who’ve never smoked. And so, people are out there and they have a loved one with bladder cancer and they’re smoking now, that’s one thing you could do to take some ownership. Or if you’ve gone through treatment and it was so stressful that it wasn’t the time to also stop smoking, I mean, that could be a good goal to see if that’s something that you could take on, again, with the help of medical team, because there’s so many cool treatment programs out there that are really helpful for breaking that habit that is super, super hard to break. Yeah, so I have some other things but do you have questions or comments first, Rick? Rick Bangs: I guess the only comment, which is probably, people probably understand this, but the whole smoking cessation piece in addition to preventing also, smoking cessation for somebody who’s already diagnosed also improves their odds, right? Dr. Jill Hamilton-Reeves: Yes, yeah. Yeah. And especially before undergoing surgery, if you’re at that place, quitting smoking even before then is going to help your body fight a little bit better. It’s never a bad time to quit. Dr. Jill Hamilton-Reeves: There’s some other interesting things out there. So, there’s some data suggesting that physical activity may protect against bladder cancer. We’ve talked about the importance of muscle all along. If you’re thinking about taking up some movement activities in your life, I definitely encourage that. Another kind of risky thing that I’m not sure how much time is spent talking about is contaminated water with arsenic. I think a lot of times we think, oh, in the US, we are fine, because we do have levels that are considered, what we try to keep levels below a specific level. But there are pockets in the US, and this really speaks to the problem of health disparities in our country. Dr. Jill Hamilton-Reeves: So, due to some different socio-demographic subgroups, there’s some Hispanic communities, the southwestern US, that’s higher in American Indian communities, Pacific Northwest, even the central Midwest where I am, well water and groundwater are so commonly used. And there can be arsenic in that water supply. And so, if people are activists and kind of thinking about their communities, really, if you happen to know a ton of people in your community with bladder cancer, that might be worth asking, like, hey, should we look at our water supply? Again, just advocating for yourself, I’m not saying that’s definitely the case, but I think it’s something to consider. And do we have international listeners, Rick? Rick Bangs: We may. Dr. Jill Hamilton-Reeves: Okay. So I think India, Argentina, Chile, Mexico, those are countries that are known to have higher arsenic levels. So if that’s helpful to anybody that’s listening. Take a look, see what you can find out. We always talk about fruits and vegetables being so healthy. We talk about that from a cancer prevention standpoint when we’re looking globally at all cancers. There’s some pretty good data about that. And for overall health. If you look at the literature, fruits and vegetables globally with bladder cancer, it’s not super solid data. However, there are some vegetables that seem to be a little bit more potent depending on the bladder cancer you have. Dr. Jill Hamilton-Reeves: I know Rick, for sure, you’ve been in meetings where we talk about how heterogenous bladder cancer can be, and there’s different types. So, some of those types tend to respond really well to broccoli sprouts. So there’s a compound within broccoli, it’s an isothiocyanate, and then the compound underneath that, if you zoom even further, it’s sulforaphane. And that particular compound seems to be helpful to some of the bladder cancer types, but it’s not a silver bullet. But if you’re thinking like well, what vegetable, I don’t know what vegetable. Oh, hey, broccoli sprouts or broccoli. Or any kind of like brassica family type of vegetable would be something to kind of think about. Rick Bangs: So cauliflower and Brussels sprouts and cabbage. Dr. Jill Hamilton-Reeves: Yeah, those kind of stinky ones. It’s funny, right? It’s the sulforaphane so it’s the sulfur. Rick Bangs: Right, right, right. Dr. Jill Hamilton-Reeves: When we met to prepare for today, you had asked about maybe sweeteners and coffee. Rick Bangs: Yeah, I think a lot of people are interested in that. Dr. Jill Hamilton-Reeves: So a long time ago, I remember this as a kid, when the pink packets became poison. It was like everybody used the pink packets, and then it was like, don’t touch those, they cause cancer in rodents. And I remember thinking, oh my God, that’s terrible. There were some studies in rats that showed that the cancer they were talking about was bladder cancer, that was the site with those pink packets. However, the dose and the mechanism, the dose was extraordinarily high and the mechanism that that made it carcinogenic to the bladder in rats would be different than what it would be in humans. They went back on their statement about it being unsafe, and now they say it’s generally recognized as safe. Dr. Jill Hamilton-Reeves: The audience can make their own decision about these things, but not all artificial sweeteners are created the same. Those pink packets are the ones that I think kind of get a little bit more narrowed out when it comes to bladder cancer, just so you’re aware why people even think that. Do you have any questions about that because that can get a little confusing? Rick Bangs: No, no. I think people have to make their own decisions and do their own research and make their own judgments. Dr. Jill Hamilton-Reeves: Yeah, yeah. And then the coffee conversation, where that comes from is, population studies looked at this, and what made the data really confusing is the pairing of different things. So with coffee comes cigarettes. And so, well-designed studies that control for smoking do not really find an association with coffee and bladder cancer risk. If you were to search through the literature, you would find some that say coffee increases the risk, but if you look closer at those studies and you knew about study design, they’re not properly controlling for smoking status. So it doesn’t appear that coffee is playing a role in bladder cancer, but smoking does. And it’s really hard to detangle smoking from coffee in some of these studies when you look at so many 1000s of people at a time. I don’t know, did I answer all your questions about things that you’d asked about? Rick Bangs: I think you did. I really, really appreciate all the insight you’ve provided today. I think our listeners are really going to appreciate the understanding that you’ve provided about the relationship between nutrition and bladder cancer and what they can do to get better results, and to bring up the theme of personalizing their care, I think this has been incredible. So, thank you very much. Dr. Jill Hamilton-Reeves: Yeah, Rick, thank you so much, again, for inviting me in. It’s always a pleasure to chat with you. Rick Bangs: My pleasure. So if you’d like more information about today’s podcast, here are some options. To learn about nutrition and bladder cancer, you can check out the Healthy Eating Conversation Webinar on the BCAN website, or contact BCAN. And in case people would like to get in touch with you, Dr. Hamilton-Reeves, could you share your email or Twitter handle or any other information you’d like people to have? Dr. Jill Hamilton-Reeves: I have a Twitter handle, I am hardly ever on Twitter, so I apologize. If you find me, you’ll see some stuff from years ago. My lab has a Facebook page. Because my name is so long, Hamilton-Reeves Laboratory just doesn’t really roll off the tongue. And so instead, we’re called the Edge Laboratory, so that’s E-D-G-E. So that’s open to the public if you want to go to our Facebook page. And then yeah, I’m at the University of Kansas Medical Center. So, I have a webpage and bio and email JHamilton-Reeves, again, that name is really a tricky thing, @kumc.edu. Rick Bangs: Okay, great. Just a reminder, if you’d like more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1-888-901-2226. That’s all the time we have today. Thank you for listening and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Dr. Hamilton-Reeves. Dr. Jill Hamilton-Reeves: Thank you.