In this first episode of Innovations in Cancer, we spoke with Bryce Olson, who was diagnosed with advanced prostate cancer at 44 years old. His Google searches showed a grim prognosis of one year. Five years later, Bryce is active and continuing his passion for surfing.
Bryce discusses his journey with prostate cancer and how a conversation with a pathologist led him to seek resources beyond the standard of care. He encourages others to be proactive in managing their treatment and shares important resources that helped him.
Interviewer: Welcome Bryce. Really looking forward to hearing from your perspective as a patient on the journey you've lived long, but maybe to start off with, you know you're this technology business person who also got thrust in the world of cancer.
Interviewer: What was that like?
Bryce: It was crazy. It was weird because first off, I was one to be super athletic, high energy, healthy guys who never got sick and cancer was the least, the furthest thing from my mind. For me to get diagnosed with something like this was just incredibly shocking. The problem was I was really symptomatic and I didn't know what those symptoms meant. But I was having all this urination frequency and urgency problems.
I got diagnosed in March and it just totally shook my entire world.
Interviewer: As you go from this healthy, active person to now being diagnosed with aggressive cancer, how did your view on life and your purpose in life, how did that change?
Bryce: I was just utterly shocked. I couldn't believe this was happening. I remember getting diagnosed. I was on the phone. My doctor at the time, he was really blunt about it, he said, “I got the results back on your biopsy and um you have a very aggressive prostate cancer and you need to take action on it. It could be life threatening.” And that was about it. I quickly rolled into this one size fits all everybody gets the same standard of care treatment paradigm, um, that everybody falls into.
I didn't feel empowered or engaged in my care at all and was told that here are my options. Uh, this is not curable and we can try to give you treatments that can keep you alive for as long as possible but we have few options and these are what they are…and everybody gets the same thing and that's what it is.
Interviewer: So then, at what point did you decide to start looking outside the box? When did that transition in your life occur?
Bryce: It definitely wasn't something that happened to me overnight. I followed my doctors orders and went through most of the standard of care stuff, you know I had surgery, that didn't work and I rolled into chemo and first line hormonalablation ADT and deprivation therapy and that got me some mileage but the chemo part was pretty toxic for me and it was just you know, while, blistering mouths, sores, and epic fatigue and neuropathy in my feet. I still don't feel all of my feet to this day. Sure enough that brought me into early 2015, and the cancer started growing again.
In the standard of care you kinda look at stats, your doctor, Google, you know I saw median survival for somebody who had progressed off of chemo, progressed meaning the cancer is still growing again off chemo is like,21 months. And, I didn't really have a lot of hope, I kinda started to lose hope. I came to terms with my own mortality. I didn't think I'd see my kid get out of elementary school and I went back to work. I came off of leave and went back to work cause I didn't really have much options for drugs at that point. I wanted my last days to matter.
Bryce: I knew that Intel at where I work there's this group that worked on health and taking our technology and helping the health of life sciences industry do cool transformations with it. I didn't know what they were doing but I just wanted to use my background and skill set to get in that group. I thought that would be interesting and that’s when I learned about genomics and precision medicine and the companies we were working with. And, then my whole life changed.
Interviewer: It sounds like it was difficult to get access to good information as a patient, maybe if you could speak to that it sounds like a good funnel.
Bryce: There’s two completely different tracks. I think when you’re on the standard of care journey or path, you get plenty of information related to the standard of care treatment and how they work, and how the toxicities and what you can expect. But there’s not a lot of those out there. And, they don’t really get into..it’s like a one size fits all paradigm, everybody goes through them and they have a certain order or sequencing of when you take those things, but um, even though everybody is unique and different everybody’s going to respond to these treatments in a different way. It’s kinda just a one size fits all and that’s your path.
But when I got away from that and I learned that you know what there’s diagnostic tests out there that can actually help you as an individual that can identify what’s uniquely driving your disease, and that can lead to a more educated, data driven treatment path. Once I learned that, thenI got way more engaged in my care, I felt way more empowered and I felt educated to where I could demand those types of diagnostics because I want to understand what’s driving my unique disease and then I want to take what’s on the other end to that and get on the right kind of treatment so I felt that I went away from that like I hate to say but kinda sheep that’s on its way to slaughter to being an educated sheep, I guess. Like, somebody who now knows what’s driving his disease who is very curious about identifying everything I can at a molecular level and then using that to guide my treatment path, I just felt like Ok, now I’m way more empowered and I can own my own health care and now I can move out of this paternalistic relationship where the doctor’s way up here and I’m down here to getting it more on a level playing field. So that for me was critical. And, then those are the days when I started getting my tumor sequenced and identifying what was driving it, and then using that information to get onto more targeted and less toxic stuff, and that’s when I also learned about ARV-7 and there’s a splice variant out there and you should understand hat status too b/c that can help you determine whether that should go secondary hormonal treatments or not. ARV-7 was on my curiosity.
Interviewer: For our audience, the ARV-7 test is a test to determine which patient with advanced staged prostate cancer will benefit from chemotherapy or hormonal treatment therapy. A negative result indicates the patient will be receptive to hormonal treatments. Bryce underwent testing and will describe his journey.
Interviewer: I’d love to take those two separate stories and just kinda dive into it. Maybe could you tell us about you know what the tissue sequencing and that process where you went on the trial.
Bryce: So I had my tumor sequenced at OHSU’s Knight Cancers Institute and I got to know the head of pathology there, he was awesome. He helped me understand what this was all about and then when I had my tumor sequenced and the results came back, he called me up and he said you know you have some mutations that could be clinically significant and you need to learn about this and I was like, great!Tell me more, you’ve got my attention now. He basically said like, look, you’ve got this hyper active PI3K Pathway and your cancer is binding to testosterone or wherever it can to keep that process going and when it folds in the nucleus its picking this specific pathway and it’s not just mutant, it’s hyperactive cause you have a tumor suppressor gene that stops crazy activity on that pathway and he’s out to lunch, too.
If you can find a drug that can inhibit this pathway you might be able to get a durable response out of it. And, I was like,outstanding, that’s great information. And, so sure enough, there were drugs in early development that were called PI3K inhibitors and the one I found was aPan-PI3k Inhibitor that inhibited pIMK and all the isoforms which without getting too geeky, really kinda shut that pathway down hard, and uh, having that data made me empowered like I just called up the principal investigator of the drug and said I want into your trial and they said sorry there’s no spots available, and I said yeah but I got sequencing data…and she said you got what?I said I got genomic sequencing data and I know I’m a perfect molecular match to the drug you’re trying to test and she was like, wow, no one’s ever called us before…that’s outstanding because I would love to create a cohort of people who are PI3K mutant and cause you’re right, that’s the drug we are testing. It’d be outstanding to see how people respond who are actually perfect matches. They made a spot for me and I got in.
Bryce: I became a huge believer in precision medicine and I just tried to rinse and repeat. Like when a new lesion shows up again, just try to profile it and you know what? I want to do DNA sequencing, I want to do RNA sequencing, I want to do tumor microenvironment… I want to do anything that I can to understand it better. I just feel that gives me more data to try to engineer an exceptional response versus just randomly falling into one.
Interviewer: Right, so after this response, the cancer starts coming back as it almost always does and now you’re looking at ARV-7 and all the decisions that you were thinking about at that point.
Bryce: I’m at a point now where I want to do sequencing again at some point but when you start targeting certain pathways and then you start shutting them down & the cancer figures out a way to get around it you build up a little more heterogeneity. Your cancer is more heterogeneiuss. It’s not so easy to shutdown multiple things so then I went back to the standard of care stuff around second line hormonal ablation and second line androgen therapy deprivation therapies and I said OK I’m willing to consider that now but I want to make sure I’m a good fit. I don’t want to waste any time if I can, if I’m gonna take this drug and find out that’s’ not going to even work. So can we do the AR-V7stuff you know. I want to do that now. And, um, I’m not even sure if it was me that said it or whether it was my new oncologist who I love and is awesome, she probably reached out to you guys or maybe some of the researchers at UCSD I was working with reached out to you guys, um but I was really excited to do that.And, I got the test back and I was negative which kinda surprised me a little becauseI figured with my aggressive cancer I might be positive. So once I found out that I was negative I was OK, lets do this. I’m confident now to take this drug and I’m happy to report I just had my PSA last Friday – I’m four months into this thing and I’ve had a negative PSA every month that keeps dropping(excellent). Yeah, every month. So, um, and not only that uh, so I’m on Zitiga,which is the second line of adt drug and with Zitiga you get a little prediszone and I kinda like prednazone? Cause it jacks me up a little bit and like, my muscle mass is coming back and I have so much stamina on the water when I’m surfing now and I don’t even feel like I’m on treatment. I have to say it’s the most tolerable drug I’ve ever been on. In the five years that I have been dealing with this…so I love the decision that I made.
Interviewer: Great, I’m so happy for you. Then as you start thinking about going forward and the decisions you kinda alluded to this in more sequencing. You know, what do you think the innovators out there need to provide you next? What is it that you really feel um, is going to be helpful for you to understand in the future.
Bryce: No, that’s a great question. Um, I’ll talk about what the innovators need to provide me next but I also want people that are connected to policy to like wake up because this test retails for like $5,000.00 or something like that. My drugs are more than $5,000.00 every month. So for them to reject diagnostics like this but at the same time being totally open and fine with covering the cost of a drug that every month costs more than the diagnostic does is asinine. It’s silly.
What if I was AR-V7 positive they would have been fine in covering the cost of this drug and then it wouldn’t have worked and I would have stayed on it for a few months, right, and then it still wouldn’t have worked. At some point we would have just thrown in the towel on it. But you could have just saved me a lot of time and money if we would have just covered the test found out the result and if I would have been positive, I wouldn’t have bothered. So you know, I get really frustrated with the fact that um, if we want to move away from a volume based health care system, a fee for service health care system, and move to true value based and outcome based then you need to do some additional diagnostics upfront so you can understand what’s driving a person’s disease.
Bryce: So we need the insurance companies to move away from being so short sighted and to look at the long term and the long game on this stuff, and like Medicare does. But why does Medicare do it because they know they’ve got you for life once you’re 65,they’re like, oh. We gotta really get on top of stuff for these people.
Bryce: What I am looking for I am very curious on um, so from a DNA perspective, if I want to move beyond just the 300/400 genes that we look at today, I think we need to continue to see these molecular diagnostic test explore much more…I mean, there’s 20-thousand genes in the genome that code for proteins, and I’d like it to see status on all of them. And, maybe that’s too much. But I think we know a lot about the 300/400 genes that code for proteins that are related to cancer but there’s a long tail..um, that people like me who have already done the low hanging fruit stuff. Like, I need to know the long tail. So I want to see that. I wanna see more RNA expression so even if I have a defect in a gene is it expressing and active and actually generating a protein that I need to… I want to look more into that. And then,for prostate cancer unfortunately it’s kind of a cold tumor from immunologic perspective and there are some really expensive uh, immunotherapy drugs that are out there and some of them can be really effective if you can light up the tumor and get the immune system to see it. And on the surface, you know prostate cancer again it’s kinda a cold tumor it doesn’t light up. Even if you use these drugs and put the breaks on the immune system. The immune system is looking around and saying ok I don’t see anything.
Bryce: You just took the leash off me and I want to go fight something and I don’t see it, so I think the answer to some of that might be in the tumor microbe environment. Looking at the surrounding cancer and are the T-cells penetrating the cancer if not,why not? What around the immune system is blocking it? And expose all that and then that might gives some clues on how to add other things to an immune therapy so I can you know, so w/o getting too geeky on this ok, could we give myself a virus first that might encode things that are commonly showing up on my cancer so that we can kinda present that to the immune system to say tada-your cancer Is being driven by this, this, this and that.
you see it now right? So then the immune system is kinda like oh yeah, there it is and then throws some other stuff on it to give it a little bit of a turbo boost – you know what I mean, like <yeah, absolutely)that stuff is what I’m really curious about.
Interviewer: Yeah,I think with Jim Allison winning the Nobel prize this year immunotherapy is incredible for many patients but we still have a lot of tumors like prostate and breast which is just not hot tumors which you just described, how do we turn a cold tumor hot I think is an incredible challenge for us going forward.
I’m also you know I love all the research that you guys are starting to do too. You know cause it’s like you look at that CTC and moving beyond AR-V7 and I’m sure there’s a lot of things you guys are looking at and that excites me. I want to see more and more of this move from research to clinical. Whatever we can as patients and patient advocates like, whatever we can do to help. I mean, put us to work.
Interviewer: Maybe it’s just a big question I have for you which is first of all you’re much more younger than most prostate cancer patients, and your motivations are different– you’re highly motivated into this and you know, you’re well educated in terms of the disease and the biology, how do we work to get that level of education and engagement with your prostate cancer peers and I know you’re, you talk to many different patients uh, who are fighting the same fight. What do you think?How do we engage you?
Bryce: I think, so a couple of things. You’re right. I think the average age for guys that get diagnosed is like 67 or so and but there is…there are a lot of younger guys that are getting diagnosed with it that younger guys like me who have 10 year old daughters – you know, who are desperate to see them, get into high school and go to college and get married and you know that is a huge motivator. I don’t know if I’d feel the same way if I’d already lived my life and I got grandchildren and maybe I’ve already seen everything I need to see and maybe I’m not as motivated, no I’m motivated. I’m super motivated. And, I know a lot of my friends who are my age when I clue them in to what I’ve done then they are equally as curious and they’re pushing the envelope and there’s…I’m not that smart. I am not. I’m a business major. I didn’t go into science or engineering. I have friends that did and when I clue them in on what I’ve done they take it way further than I have. They get way into the weeds. And then they push their medical teams and their researchers to do much more than I have done. So I think that um, first and foremost maybe it’s as simple as educating people and patients that um, that you are unique as an individual and that there are things that are inside of your biology that you need to understand. And, you don’t have to get into the weeds, you just need to understand that there are unique things that are driving your disease. The answer is in the DNA, a DNA-related things and there are technologies – there’s technologies in science that have come together to make a bunch of these diagnostic tests that can surface that up for you. And, I think it’s as simple as that. And, you won’t get it unless you demand it. If you just go into your doctor’s office,they’re going to put you on the standard of care and they don’t have time to talk about these molecular diagnostic tests and they don’t have time to talk about trials but you need to take it as a patient you need to take ownership to demand to be treated uniquely and to individualize both the diagnostics and treatment plans for you. And there are, again, there are so many solutions out there, you just have to demand, and it’s as simple as that really. Getting the word out that doesn’t have to be a one size fits all.
Bryce: Demand like, sequencing demand like molecular tests, demand ARV-7 test things like that. And you demand it and it’ll happen
Interviewer: That’s well said…and how do we in the industry working on these technologies better help you? And your peers whether it’s in prostate cancer or other cancers, how do we…b/c I agree with you, I think this is--- you know we have to move very stagnant group towards adopting technologies and tests that can make a difference?
Bryce: One thing could be more of a grass roots level to try to get on the agenda of prostate cancer soul pork groups? At big academic cancer centers across the country and go in and speak a little bit about this.It could be engaging with some of the big prostate cancer research organizations or just prostate cancer advocacy groups like uh, I mean PCF or Zerocancer.org or us too, or just places like that and try to get engaged there. There’s… people who are out searching for ARV-7 is In the considerate, people talk about this you know but they don’t really understand what it means sometimes and they don’t understand if you’re positive or negative what would that really tell you? But it is an important test these second line drugs like Zytiga and Xtandy are going to be something you have to consider if you have metastatic disease and before you pick it wouldn’t it be nice to know whether you’d be a good fit for it or not?
Interviewer: Yeah, absolutely what we’re hearing a lot of is the decision if that doesn’t work the decision to go on chemo therapy again is not something that you want to repeat unless you really need to and so we are really focused on specificity the test to say that if you’re positive we know this is a decision you have to make.
Bryce: I think that but that’s reality and that’s, you’re presenting people with data and information that whether they like it or not it’s data driven and it’s real.Like, if I were to be AR-V7 and positive, I wouldn’t have wasted my time with the second line drugs and I would have looked at that probably. Or at least I would have looked at other things that could deal with the fact that maybe I’ve got more DNA damage repair mechanisms going on or homolgous recombination deficiency in you know, what I went away from the hormone driven stuff into other things.You know I think that this is really information that we need to take and we need to work with our doctors say OK well, then now what? If I’m this, then this doesn’t make sense so what do I do?
Interviewer: What have you seen in terms of just the standard practice of being a patient? So I hear stories of you know, endlessly getting scammed and image and blood draws left and right and then potentially additional biopsies what is that like on a day to day basis?
Bryce: I may be look at it a little bit differently um, for me I feel extremely fortunate that I have a cancer that has a blood marker that gives me an early warning um signal that you know for guys with metastatic disease who do not have a prostate anymore and who’s cancer is kinda say PSA driven that’s a great thing to have because that’s’ my early warning signal if I see the PSA start to move and then I go, I test monthly BTW, um, and if I see a bump up I don’t freak out with just one month I go back and see if it’s going to bump again and if I see a trend then that gives me three months to four months before I start seeing it imaging.
Bryce: So that gives me time to get a plan in place and maybe go on to some systemic drug um,and then that also tells me that I need to start imaging again and then I’ll get new imaging and we’ll find something and you know I’m what’s considered oligo metastatic which is a term that a lot of prostate cancer patients may not even understand but um, some people feel that oligo metastatic disease which is maybe three or four lesions you’re not lit up like a Christmas tree you only have 3 or 4 you can treat that slightly differently. You can kinda go after that in a targeted way um through maybe high dose like stereotactic high beam radiation treatments and things like that. So I think it’s really important to stay on top of your disease through PSA tests through imaging keep the tumor burden as the lowest possible if you can stay in that oligo metastatic state you’re going to live a lot longer. You know. Um, so I don’t mind. I don’t mind the frequent scans. I don’t mind the blood tests. Am I more likely because of all the imaging that I’ve had to potentially get a secondary cancer ten 15years from now? Maybe but I don’t care…if I get 10 or 15 years I’ll be ecstatic..
Interviewer: any last words that you have to the community of physicians and scientists and policy makers and technologist that you would like to share with us
Bryce: You know the demographic of America is changing. We millennials- millennial generation is never going to accept this one size fits all standard of care treatment paradigm. So if you as an oncologist think that because the baby boomers and gen x’s kinda just accepted it that you can just keep practicing the way that you have you got another thing coming b/c this is the generation that expects everything to be personalized and customized to them, right? They’re going to be shocked that there’s no app for this. You know where’s the app that can just cure my cancer? You know why do we not have that? So, I think that if you’re not getting on the train to work on understanding the molecular drivers of the disease and how to treat people based on that and to really embrace these technologies that can surface up new drivers molecular drivers in things like your guys’ test – if you’re not caught up and up to speed on this, you need to get up to speed on this because your patients are going to bounce. They are not going to accept this SOC everybody gets this same treatment paradigm and they will find doctors who will appreciate the uniqueness of individuality of people um, so, you know get on board is my message I guess.
Interviewer: Well said and thank you so much for joining us today and I’m super excited to work with you continue to work with you and other patients like you so that we can enable these changes for the next generation.
Bryce: Absolutely,likewise, thank you very much for the opportunity.