Life, Cancer, Etc.
Life, Cancer, Etc.
Discussing Lynch Syndrome and Good Medical Care with Dr. Phil Spiess, MD, MS
Dr. Phil Spiess is a great guy and so easy to talk with. He's a genitourinary oncologist and assistant chief of surgical services at Moffitt Cancer Center and a full professor of oncology and urology at the University of South Florida Morsani College of Medicine. He's also researching Lynch Syndrome, which I have, and helping doctors around the world develop protocols for people with rare cancers. Our conversation ranges from travel goals to why second opinions are important. Take a listen.
To find out more about Dr. Spiess and his work, visit https://moffitt.org/providers/philippe-spiess/
NOTE: I am not a medical professional. Everyone on the "Life, Cancer, Etc." podcast is sharing their own experiences, not giving medical advice.
Keywords: Lynch Syndrome, genitourinary cancer, urothelial carcinoma, Moffitt Cancer Center
PC: moffitt.org
You can also find some episodes on our YouTube channel: https://www.youtube.com/c/LifeCancerEtc
I'm Heidi Bragg and this is Life, Cancer, Etc. My goal with this podcast is to connect you with stories and resources that help you feel happier, more resilient, and less stressed, especially when you're going through hard times. All right. Today, my guest is Dr. Phil Spies. Dr. Spies is a genitourinary oncologist and the assistant chief of surgical services at Moffitt Cancer Center, where I was treated. And he's one of my doctors, full disclosure. He's also a full professor of oncology and urology at the University of South Florida's Morsani College of Medicine. And he's just an all-around good guy. So we like him. That's why I want to talk to him today. And the neat thing, the funny thing To me, last time I was in for a procedure, what, three weeks ago, four weeks ago, something like that, he told me he was doing research into Lynch syndrome, which is the genetic abnormality, chromosomal aberration, or whatever you want to call it, that I have. So first, I'm going to ask Dr. Spies to just kind of introduce himself, tell a story a little bit, and then we'll talk about why he chose medicine, oncology, and Lynch specifically to study. So, hey.
UNKNOWN:Hi.
SPEAKER_01:Hey Heidi, great to be here. Thanks for the invite. Congratulations for putting this together and yeah, very, very excited to speak to you today. About myself, well, I'm privileged to take care of awesome patients like someone I know, number one, but born and raised in Montreal, Canada. So I'm a Canuck at heart and moved to Tampa, Florida after doing my urology training in Canada and and then went to MD Anderson, Texas, did three years of fellowship there, two years in the lab, one year surgical training, and then I've been here now for 14 years. Really? Yeah, so I'm officially an American citizen, a Tampanian, I guess is what they call us, and love it here. Moffitt's a wonderful place, and my wife is here with my two children, who are also little Americans, and just an awesome place to live and work.
SPEAKER_00:That's awesome. And you guys will now, cause I work with friends who are Canadian too, and they're trying to get back to Toronto. And so it's neat because now they're opening things up so you guys can see family and stuff.
SPEAKER_01:Yeah. I just found out, as you know, last night. So we've been planning hopefully to go see mom and dad. My parents, uh, unfortunately I haven't seen them like 16, 17 months, a year and a half. So we are planning to going home and taking the kids with us and, uh, A lot of lost time there. So looking excited to go back and see the folks and the family. And yeah, it's great.
SPEAKER_00:Yeah. And they want to see the grandkids. Let's be honest.
SPEAKER_01:I'll be honest. Yeah, they probably want to see me for about 10 minutes and the rest of time will be grandkids. And if I give them the grandkids, I think me and my wife probably have some chill time coming our way.
SPEAKER_00:That's probably true. Okay. So growing up or how did you decide to go into medicine first of all, and then why did you choose oncology specifically?
SPEAKER_01:So medicine, interesting. I always loved sciences, so I knew I wanted to go in a scientific-related field. English and arts was never my thing. Okay,
SPEAKER_00:pause. This said by somebody that when he has to mark me for surgery, it's always this elaborate-looking tattoo on my abdomen. I find that really funny because you do more than just sign. It's always looking kind of like a Maori tattoo. tattoo or moco or something.
SPEAKER_01:I'm still practicing my artistic skills. As you can tell, there were a lot of remedial work required. Jeez. Um, so yes, so science was what I liked and, uh, you know, the more I did biology and I found out about human physiology, I found it really fascinating. And then I volunteer in hospitals, did that for several years and did research through that. And I found out more and more that that was really what I was interested in. And, um, Really, when I sort of decided on specialties, I love surgery. I love the ability to help people directly through direct actions. And oncology was just, when I was training, I found that oncologists were able to really have the greatest impact on patients and families. And although it can be challenging, not with the hours, but what you're dealing with on a day-in and day-out basis, I found that it was very rewarding. And that's when I decided I wanted to go do a fellowship. And And really train and get that expertise and really dedicate my life to helping others.
SPEAKER_00:No, and he's like, and the thing is with particularly, you're not just blowing smoke. Like I've seen you do that. And you're always very personable. You're very straightforward. Like when I first got diagnosed with the urethelial cancer. So that's been about a year and a half ago. Like, this is probably what we have to do. This is what it means. This is a slow, slow growing. I remember you used the term lazy cancer, which was very reassuring after the other ones I'd had, you know, and, and it was just like, okay, here's what the deal is. Here's how we handle the situation. Here's our plan. Let's go. And we have, and you know, things have actually turned out great.
SPEAKER_01:Yeah, no, I agree. I, you know, I appreciate it. I like to have a very honest and direct relationship and, truthfully, taking care of patients like you are easy. You're just so, you know, personable, easy to speak to. And snarky. And it's, yeah, not sugarcoating, but it makes it that much more enjoyable. You establish a relationship over years. Yes. It's one of the greatest, honestly, things is that is really feeling like you're able to sort of have that relationship with your patients. And I tell people all the time, you know, I personally think there is no role for anyone to do the medical field, if you don't want to work with people. There's many other things you can do in your life. And if you don't enjoy that part of it, or you don't feel fulfillment with that, then it really isn't. And, you know, just having gone to the hospital, just going for a physical checkup, you know, in a blue moon, as a typical doctor, I rarely do that. But I would say that you see the difference a good physician can have on your care and how positive outlook it can, it can ultimately do.
SPEAKER_00:Well, and I feel like with you, with Dr. Brohl, Dr. Ngoi, with my people, I call them my people, with my people, we talk as people. Like I, I come to you for your expertise, but I never feel treated like, um, a body without a brain type of thing. It's, it's, it's a very collaborative relationship. And I love that.
SPEAKER_01:Yeah. You know, you nailed it really to me. I, I, I don't ever think that doctors should have a role in telling patients what they should have done. You discuss the options, discuss the pros and cons. It's a personal choice. No one could ever decide for you. This is your body. This is the most sacred thing that you own and that you have privileges over. So I agree. I think that really, to me, is the critical role of a physician, of a surgeon, of any doctor or any healthcare person is to really work and really be very respectful of the beliefs and really what people are seeking out of their care.
SPEAKER_00:Yeah. And I think it makes a difference. Personally, I think it makes a huge difference in outcomes too, because you're like, you're, you know, you're an agent acting, not an object being acted upon.
SPEAKER_01:It's really true.
SPEAKER_00:Okay. So tell me about, can you describe what Lynch is and then why you've now, why you're putting more focus on studying that?
SPEAKER_01:So thanks. Thanks for asking that. Cause it's definitely something where we're doing more and more research. And so, so I've been involved in a society dedicated to rare genital cancers over the last year and a half. And really what we really felt was that Across the world, there's a lot of great doctors, a lot of great clinicians, but there are certain conditions which unfortunately they're not seen with high frequency. And what happens because of that is patients are not necessarily getting the best quality or evidence-based type care. And one of the areas we've been focused on are genetic related cancers, meaning cancers that could be passed on or have some sort of genetic predisposition to them. And Lynch is a perfect example where we know patients, for example, can get colon cancer, can get various types of cancer.
SPEAKER_00:Ding, yeah.
SPEAKER_01:Sometimes physicians forget to ask or to sort of screen and think, well, is this part of a bigger thing where someone is predisposed to certain types of cancers? And you can have various types of genetic abnormalities that can pop up. And, you know, there are some things called splice variants or other, which basically means that the genetics material is just abnormal in a certain kind of way. And because of that, it's like, I look at it like paper mills is if the paper mills has a problem with it and you start producing a lot of paper, then the paper is going to have that, that go through and through and through. And then you're going to ultimately have abnormal looking paper or abnormal genetic material. And that predisposes you to getting cancers. And Lynch is a, is a good example where as a urologist, as a special, we haven't done a really good job thinking of, Hey, is this part of Someone has a certain type of cancer of the lining of the kidney and ureter or potentially of the bladder as well. Is this part of a bigger thing where they're predisposed to getting cancers in other areas? And the critical nature is if you don't think about it and you say, well, I'm just going to do surgery and remove the kidney and the ureter and someone has cancers on the other side, well, you've just burned some bridges. That patient may, unfortunately, at some point require the other kidney removed and dialysis. And you may not necessarily be thinking about of other areas or other organs that could be impacted with that. And so through the society, I've been working with some really great international other people who are dedicated to this. And we've started developing really some review papers. We've been writing on this and advocating that there needs to be a greater role for screening for hereditary conditions like Lynch. And we're trying to develop some standardization on how patients are being evaluated, screened and monitored. One of the most important thing I think I've seen is that, all right, we know the genetic mutations that are associated with it. We know some of them have a higher risk of association with certain types of cancers. But the screening and the surveillance of these is not really very different based on which genetic mutation you have, for example. So I think we need to sort of be a little bit more tactical about and how we screen patients and also that we don't put every patient in the same category in terms of the tests we put them through. If we don't need to put people through invasive testing because their risk is low, let's not do that. But if you're at risk, at a higher risk, let's sort of make sure we're following you very carefully and monitoring you. And also I think the opportunities that I see with this is that With research and science today, we're able to sort of know and target these genetic mutations. So this is a perfect area where I think new medical treatments are really, have a great promising opportunity to improve the care of patients and essentially cure a lot of patients.
SPEAKER_00:Are you thinking like gene therapy and stuff?
SPEAKER_01:Exactly.
SPEAKER_00:Are all of them, so is all Lynch, I think mine's an MSH2 and MSH6 abnormality. Are all Lynch, both of those, What qualifies it as Lynch?
SPEAKER_01:It's one of the mutations. So you mentioned MSH2, MLH1. And so you can have one of the mutations. You can have both of the mutations. And so it's important to know that you need to screen for all those three of those mutations that are present. And Based on that, we're understanding that the penetration in terms of which cancers you may develop are very different. And if you have a relative that has one type of mutation, potentially you may have the same type of mutation as well. So it's really important to really look at this. And the way we do it now in most clinics is that if I see a young patient with a certain type of cancer, like of the lining, I automatically send them for genetic screening. The big thing with genetic screening is I always tell them, you know, it's definitely beneficial to get screened for cancer, but there's a lot of implications of being screened for cancer. Meaning if you have this, you just need to be ready of accepting there's additional testing you may have. And a lot of the psychosocial effect that, oh, then you may have to think, are my, you know, are my siblings at risk and that type of thing. And I really think it's important to know it's not, it's more than just a simple test. Sometimes it's the right thing to do, but you just need to know that it may bring on a bunch of other things you may have not thought about.
SPEAKER_00:Yeah. Like my kids, the first two are old enough and they've been tested and they're Lynch negative, which is great. And as the others get older, they'll be tested as well. But it's, it's just, it's something you have to think about. And we're pretty sure it came through my dad's family line. Cause if you look at the cancers that occur in my dad's siblings, his cousin, et cetera, you know, you've got uterine cancer. ovarian cancer, some cervical cancer, you've got, you know, like mine, my colon cancer and all that stuff. So it's interesting to see how it how it falls in families and gratefully that so far we don't have it the next generation and ours. But it's a consideration because it's, I always tell people because this is what I was told. It's not Lynch is not necessarily a death sentence or that you're going to get cancer, but it means you need to be screening on a much more regular basis than the general population.
SPEAKER_01:Exactly, exactly. And I think what I think we could do better as an institution, and I'm not just saying my institution, but I think as institutions, is making it a little easier for patients to be screened, meaning you shouldn't have to sort of ask around or shop around where to go and sort of, we should bring that type of care and service to the patient. Like
SPEAKER_00:once you qualify, here's a protocol.
SPEAKER_01:Yeah, exactly. We say, boom, boom, boom, you need to be seen. We're going to coordinate. We can make a patient come on a given day and have the test, avoid repeating tests that are not needed. I think that's very beneficial, and we should sort of do that and offer it to our patients. And along with that is then we're able to integrate the research and the innovative new treatments in that approach.
SPEAKER_00:And are these protocols and things part of what the organization you helped found is doing, setting this up? Exactly.
SPEAKER_01:Yeah, that's exactly what we're working on right now. There's an initiative with an institution I work with in Italy that does a lot of research in this area. And we're trying to develop protocols across our institutions and develop really, although there are some really excellent patient advocacy groups dedicated to Lynch, work with them afterwards to try to encourage, advocate, and promote these types of initiatives.
SPEAKER_00:Yeah, so that people know what they're getting into kind of thing.
SPEAKER_01:Yeah, exactly.
SPEAKER_00:Okay, this is a total aside, but it's so cool because last time, okay, when I was there for surgery a few weeks ago, we just started talking. I asked him to be on the podcast, and he's like, yeah, and he started talking about Lynch, and I'm like, oh, my gosh, that would be great. And P.S., he's doing research with somebody in Italy in Milan, which is where Kevin and I want to be part of the year once our kids are all launched. So that was like perfect.
SPEAKER_01:I will definitely send you over to see my buddies, my colleagues over there. They're a wonderful group.
SPEAKER_00:Well, and Kev's fluent in Italian. I'm not as fluent, but he can get all the stuff I don't get. What are some things you wish patients knew? We talked a little bit about this, but knew ahead of time about Lynch or about genitourinary cancers, either of those things.
SPEAKER_01:Yeah, I think it's important to know that, you know, having a cancer diagnosis is associated obviously with a lot of fears, a lot of of apprehension, you know, cancer we associate with a death sentence. Lynch by itself is not necessarily that. It just means that if you have that predisposition, you're going to need to be monitored and followed for a significant period of time. And it's important, you know, if you have a diagnosis like this, you know, there's some wonderful doctors, but you probably want to be treated in a place where they've seen patients with your diagnosis. They have some level of standardization. They know to avoid doing radical treatment if they can avoid it, understanding you may have a risk of having other cancers in the future. And I also tell patients that you also need to be your advocate, meaning if you see blood in your urine, if something's not right, probably there may be something that's wrong. Reach out to your clinical research team or your clinician and be checked out. That's what we're here for, is to meet the needs of our patients. And so never feel like you're a burden or that you can't. I think that's ultimately what your healthcare team and your clinicians are there to do.
SPEAKER_00:For sure. And it's nice because no one ever makes me feel stupid when I ask a question.
SPEAKER_01:Usually if you ask a question, probably many people have asked that same question or should have asked that question.
SPEAKER_00:Yeah. No, it makes me feel a lot better. What is this line of work and study taught about taught you about yourself, about life, about medicine, about whatever. What have you learned? Mike, what have you learned? That's pretty all encompassing, but I mean, what are some of your top couple of takeaways?
SPEAKER_01:So this is a personal viewpoint is that my view about science research medicine has been that I think we've been given a lot of tools on how to follow and how to care for our patients, but it's important to continue to strive to do more. So I would tell you that that's sort of led why I do and others have done research in this area is we clearly know that the standards we've established for caring for our patients are good. They're not perfect and they could be better. And so I found myself that I've identified that I want to do more and that the status quo is not good enough.
SPEAKER_00:Yeah, I mean, thanks. Cause that's how people like me are gonna live longer, healthier lives. So thank you. Um, any other, we've talked about some of them already, but tips and tricks for patients. What about somebody, for example, a first timer, not somebody like me, somebody first timer comes in and gets diagnosed with a urothelial carcinoma like I did.
SPEAKER_01:I think it's important to know it's very overwhelming when you come in a hospital, particularly when you come in a cancer hospital. So obviously come, uh, record the conversations, uh, It's never insulting. Come with people that will be there with you that can help you understand. When we all go in a room and we're hit with a lot of information, we can't process everything. And so take the time to ask the questions that you feel are critical for you. Maybe write down what questions you may have ahead of your visits. It's never wrong to reach out to the clinical team to answer your questions after those visits. And if you don't feel comfortable with treatments, Whatever is being offered to you, ask. And it's never wrong to ask for a second opinion, to be honest with you. Back in the day, we used to, at clinic, when you're a young doctor, you get insulted if someone's going for a second opinion. I encourage my patients to go for a second opinion. I want you to feel comfortable with what I'm offering you as a treatment. It just allows me that you feel reassured that you're getting the best quality care. And so it really is important that you also read around your diagnosis or what you're being told. that you feel you can be your best advocate for your care and how you're being managed.
SPEAKER_00:Yeah. And I think it's part of that asking question is to understand, to be able to understand what's going on and not just kind of exist in that fog. Okay. Last two quick questions. What are a couple of personal bucket list items you've still got? And they don't even have to be related to medicine. They can be, but they don't have to.
SPEAKER_01:In a COVID world, my bucket list is to travel.
SPEAKER_00:That's everybody's bucket list.
SPEAKER_01:Oh, man. I tell people all the time, one of the great things about doing research and speaking internationally has been to visit some incredible places around the world. It just feels like that's not happening in recent years. I'm looking forward to traveling, hopefully with my family, and like we were talking, hopefully seeing my family, who's in Canada, still haven't seen in a long, long time.
SPEAKER_00:That's pretty cool. Yeah, I saw my mom for the first time in, I don't know, 18 months. Did you
SPEAKER_01:freeze?
SPEAKER_00:Probably. I can still hear you, though. I'm still here. I
SPEAKER_01:could probably answer the last question. Favorite place to be? Wow. So at this point, I'm home sick, so I definitely miss my family in Montreal, Canada, which I'm originally from. But like you, I am a very big fan. Big, big fan of Italy. I love Italy. It's probably my favorite country in the world. So I can't wait to go back to Italy. My favorite place over there. I've been to Florence. I love a lot, but I love the island of Capri and Santa Margarita.
SPEAKER_00:Oh, I haven't been yet. I haven't been yet.
SPEAKER_01:It's gorgeous. It's just so isolated. It's beautiful. Beautiful beaches. The food's amazing. That's
SPEAKER_00:just off Positano, right?
SPEAKER_01:Yeah, you have to go. I've been twice and both times I said to myself, this is it. You know, Mykonos is pretty. Athens is pretty and everything else. But I'm like, Capri, I think, is the ultimate place.
SPEAKER_00:OK, I'll put it on our list because I'm serious. Once our kids are launched a few months of the year, I already talked to work. We want to live over there. They're like, that's fine.
SPEAKER_01:I want a postcard.
SPEAKER_00:No, just come visit.
SPEAKER_01:Oh, perfect.
SPEAKER_00:Yeah, we'll probably be in Liguria. So between France and Milan.
SPEAKER_01:I love it.
SPEAKER_00:It's pretty.
SPEAKER_01:My cousin is in Lake Como right now.
SPEAKER_00:Shut
SPEAKER_01:up. And we went there. Yeah, he's French, but he's over there. He sent me some pictures from over there. I was like, oh, I went there. We did a cool road trip a couple of years ago, went from Switzerland into Lake Como. And Lake Como is beautiful, too. I enjoyed that.
SPEAKER_00:Yeah, Kev said it's lovely. I haven't been there yet, but he's been there before and loves it. Well, I know your time's short. So just thanks for doing this. I really appreciate it. It's my pleasure. It's just, and I think it also humanizes the medical community when people see that people are real people, you know?
SPEAKER_01:Yeah.
SPEAKER_00:Trying to help.
SPEAKER_01:I love doing this. It's fun.
SPEAKER_00:Thank you. See why I like Dr. Spies? I'm also really grateful for the work that he and his team are doing on Lynch syndrome and to hopefully make things better for people with Lynch as time goes on. When you hear people talk about the medical community and say things like they're only in it for the money, I just shake my head because my people, my doctors, like Dr. Spies, Dr. Broll, Dr. Nagavi, nurses like Lori Thompson, they are all working Wonderful people who work really, really hard to make life better for those of us going through something really difficult. This week, I would hope that you do the same. Do something nice for somebody else. Count your blessings. Look for the good and make it a great week. Thanks for listening.