Empowerment and Focus - Navigating a Terminal Prostate Cancer Diagnosis - Cameron Upton
September 8, 2021
Cameron Upton, Father of three young boys, business owner, and prostate cancer battler. Diagnosed in January of 2017 at age 43 with a Gleason 9 (4+5) Grade 5.
Alicia Morgans, MD, MPH Genitourinary Medical Oncologist, Medical Director of Survivorship Program at Dana-Farber Cancer Institute, Boston, Massachusetts.
Alicia Morgans: Hi. My name is Alicia Morgans and I'm a GU medical oncologist at the Dana-Farber Cancer Institute in Boston, in the United States. I am so excited to talk today with a wonderfully inspirational individual, Mr. Cam Upton, who was diagnosed with prostate cancer at 43 years old, is a business owner and with a very young family. He's a resident of Melbourne, Australia sees some of our friends and colleagues there for his care. And really, I think has quite an inspirational story to share and some wisdom to also lend to those who are going through something similar. Thank you so much for being here with us today, Cam.
Cameron Upton: Hi, Alicia.
Alicia Morgans: Wonderful. Cam, like I said, you were 43 when you were diagnosed with prostate cancer, which can feel incredibly lonely. And I wonder if you can share with us a little bit about how you felt when you had that diagnosis and how you took your steps forward and how you used your strength to move on to the next steps to really do what was necessary for you as you were really dealing with this new diagnosis?
Cameron Upton: Well, I think it took me obviously completely by surprise. And I was relatively successful, young family, everything going well for me. And then bang, I got told I've got terminal prostate cancer. And at that stage it didn't look good in terms of number of years, I had my kids were three, five and nine and I suppose one of the hardest things was I had no one really to talk to other than medical people. The first step I took was to kind of get over the grief of potentially dying and that took a while but then I started to actually take the approach of, I wanted to throw the kitchen sink at it. I learned a lot about prostate cancer, probably too much because I was doing my head in. But I learned enough to be dangerous and learned enough to connect well and take control of my own path. And I think that was a really key approach for me mentally to not just be told to do the standard of care but to actually question the standard of care and just go hard all the time.
Alicia Morgans:Tell me a little bit about that. And how long ago was it that you were diagnosed? And what exactly did you do when you really went hard against this cancer?
Cameron Upton: Well, so I was diagnosed in January 2017 and rushed in six days after the diagnosis to have a radical prostatectomy and then obviously didn't work and get rid of all the cancer, had already metastasized. That was a real whack to the head. But then I started to connect with people like AnCan group in the US and look for other people to question it. Even all the UroToday stuff. I started reading about what's going on on a global perspective, rather than at the start I had a medical oncologist here that was very conservative. She didn't even want me to do upfront docetaxel. And I said, well, I was talking to the AnCan guys and you guys were all doing this upfront docetaxel pretty early. There was even the talk of abiraterone back then. And I thought, well, I want to do this because what's the point of leaving anything on the table and let's just hit it hard.
Because I'm quite a fit person. I was a fit person back then but I'm even probably fitter now. I changed oncologists and I said, "I'm going to do the docetaxel." By the end of September of 2017, I started the six rounds of docetaxel and that got my PSA right down, cleared up a few of the mets that were around. And that kind of gave me the thought at the end of that process where I felt actually I made this happen, that changed my perspective of just being a patient. And I think that's the real key to getting through this mentally is to not just sit there and wallow in your own misery, that you can actually take charge and at least to some extent, control your own destiny.
Alicia Morgans: I really couldn't agree with you more. I think that when patients are able to really engage in that decision making, for most people, it gives them a sense of empowerment and helps them own the outcome and own their buy in and really have some control over things that are otherwise a little bit outside of our control, even when we try sometimes they're outside of our control. But I think it's a very positive thing when patients are able to really engage, make decisions and try to help guide the process. And I just wonder, I think for some men it can be hard to say, I don't think you and I are the best match as an oncologist and a patient and then I want to go and try different things. How did you navigate that? And do you have advice for folks who either need to have a heart to heart with their oncologist or their urologist or their radiation oncologist about switching paths or even switching doctors? What is your advice about how to make that happen smoothly?
Cameron Upton: Well, I don't think it's an easy thing to do because you've got to have a certain personality and I've always been a person that goes hard or goes home. Without that personality, you've just got to get in the mindset of these people and a medical oncologist my understanding is you're practicing, you don't always know everything that's going on around the world. And if you're a patient, you can learn a fair bit through the internet and you can just go in and question, well what about this trial that's going on? Or what about this? And I love knowing what's going on globally, like lutetiums and all these things that are happening. I questioned it from day one and really the biggest advice I'd give people is to always say, "Well, is this the best treatment that I can get? Is there anything else we can do? Can we double down on something? Can I go to Germany or the US to get some treatment?"
Because I ended up making that happen to go to the US to get Provenge when I don't know anyone in Australia that's gone to the US to get Provenge. But I just think it's all about controlling your own destiny. You don't want to be a patient and just let yourself be taken by this disease. It's bad enough as it is. If you can empower yourself, it feels good to actually do something proactive about it, rather than just sitting there. I spent 12 months pretty much crying in my bedroom every day that the kids weren't around me, but then I kind of snapped out of that and said, "Well, if I've got X number of years left to live, I'm certainly not going to die thinking I wish I'd done that."
Alicia Morgans: I think that's a great point. And I also would say that it's not everyone who can fly around the world to get different treatments but we can always ask questions and we can always make sure that we understand if what we're getting is the right treatment or the best treatment at the time in our own settings. And if we do have access to flying around the world and trying to get other things, then to learn about those things too and make sure that our primary oncologist or our primary team is able to help us get those other treatments and to then re-engage back in our care in our home country. Everything's going to be different for every person but I love your message of engaging and trying as an individual, as a man who can learn and who can participate and really lend his voice to his own care.
I think that is incredibly empowering. And as you say, I think gives you a sense of control and at least participation in saying, "I am not leaving anything on the table." I think that that is fantastic. And I wonder as you've moved through your journey, what have you done to really make sure that you could give it your all? I know you're incredibly fit, how have you stayed that way? Because it can be hard with the treatments that we use for prostate cancer to maintain fitness and energy when sometimes the treatments zap people of fatigue and make them gain weight or lose muscle mass in ways that can those kinds of endeavors really, really more challenging.
Cameron Upton: Once again, I think it is a good element of personality and being so stubborn like I am. I just kind of don't accept that I'm going to be beaten each time, however difficult. I've been told off by nurses doing pushups after an operation. I suppose I'm just very determined to stay fit because there's not many things you can do yourself to actually slow this disease down. But the one consistent thing I've found in all my readings is exercise. I've just done exercise every day, unless I'm totally bedridden or something like that. I think exercise is a real key. I'm not a total believer in diet and that because you can read 200 articles and they'll be 200 different descriptions of don't eat red meat, don't do this. I gave up on the diet side of things but the exercise for me invigorates me every day.
Because otherwise, I would wake up in those first couple of years and I'd wake up at 3:00 AM in the morning and think, oh my God, I'm not going to get to see my kids turn X. It was horrible and then once you to do your exercise and you get the adrenaline going through you and it kind of starts your day and you can get through the day and you can not wallow in the misery of prostate cancer but it's always in the back of my head, no matter what happens. And I hate leaving the month by month PSA test, I think that's the worst thing ever. That's the cruelest thing. It's like a roller coaster of nightmares. The PSA test is actually the thing I struggle with most mentally. I don't mind what treatments I get done, except for that, whatever it's called leukapheresis thing. That was just, oh my God, that was horrible.
I don't like needles. But I just think you've just got to fight way through and like up every day and say, "I'm going to do this." And if you don't do it, then you will gain the weight and you will feel miserable because I did at the end of the docetaxel, I put on 15 kilos and that was very hard for me and you don't feel good. And we already don't feel good with all, I've had so many things done to me that I've lost track of how many things I've had physically done to me. But if you can feel a little bit good after exercise and keep fit, it just takes your mental attitude focused.
Alicia Morgans: Well, I think that's a great message. And I think especially for men to really recognize across the spectrum, whether you're 40 years old or 60 years old or 80 years old, there's probably some level of fitness that you can engage in. And those are questions to ask your doctor and really also engage with physical therapists if that's appropriate for you or a trainer, perhaps in your local gymnasium or even a personal trainer who could come to your house, given the situation with COVID. Really engaging in ways to help you stay active and stay fit that are right for you as an individual.
And I just would love to hear just to dig down a little bit more, Cam, you were diagnosed exceptionally young and I would say maybe that's a good thing that you were diagnosed at that time, rather than not knowing and finding yourself years later with a more challenging situation. But goodness knows no one wants to be in his early forties and told that he has metastatic prostate cancer. Please let us know, how did you draw strength? How did you find that that ability to support your family? You said, I think three young boys, very young. How did you do that? And how can you advise others to find the same strength regardless of their age, given the challenges that they might face?
Cameron Upton: Well, there is that period of time that you just have to cop it on the chin and cry and I don't know anyone that wouldn't do that. I did, plus I had the business to deal with, my boys at that stage with three, five and nine. And my world just came crumbling down around me. But I think as I mentioned before, I'm quite stubborn so once you do pick yourself up off the floor, you try and network. And I think I mentioned to you before the interview that one of my biggest issues, I didn't have a network of people my own age to be able to just talk to. And that was actually one of the hardest things that I have been through is that first year of really having no one I could talk to because a 70 year old with grandchildren and retired is very different person than a 43 year old right in prime with their business with a young family. We don't really have anything in common other than prostate cancer.
I think you need to be able to reach out and find somebody and I did eventually find someone. And because your family can't understand this normally this as best as they try. But if you can find somebody that has this cancer and can relate you and just to share the tears every now and again or share the positives or discuss the next course of treatment, it just makes a world of difference. I think you do need to expand your network and my network's, my best friend in prostate cancer land, he's in Arizona. You just have to reach out as far as you can go and get onto the forums and wherever you can because all the forums helped me. I probably wouldn't have taken as aggressive a path if I wasn't connected to these people who also questioned, do you want to do the standard of care? Or why not try this?
Alicia Morgans: Well, I love that. And thank you for being so candid and so willing to share. And I would also say to all the listeners that Cam's actually been so generous as to say that he'll provide some contact information. If you are a younger man with prostate cancer and you want to reach out to Cam, please, please do. And Cam you may find yourself starting your own support network and will have to merge with others. But just to give people that point of contact, I think no matter what it is that you're dealing with, if we don't feel alone, I think that's incredibly powerful. It gives us the energy to try to do the next thing and Cam you've been doing phenomenally. I think at least it's worked for you if not for others. As we wrap up now, what would your comments be or your recommendations to other young, middle-aged or older men who are dealing with prostate cancer? What is your guidance? What would you suggest to them?
Cameron Upton: Well, you can contact me and I'll help you a bit, but I still stick to what I said before. You've got to stay focused on the treatments that you're getting, questioning your treatments, making sure you're getting exercise and doing other things. My bucket list is so long now, I probably need to find a way to live another 10, 20 years because I've got to tick this bucket list off. You got to find things to distract you from dwelling on the cancer and irrespective of your age, I know 70 or 80 year olds that go on great big bike rides to stay fit. And you just got to find a way to remain as positive as you possibly can and just always question the path ahead.
Alicia Morgans: I love that. I think that hope is in those questions and that we can make our own destiny in so many ways. And so reaching out, engaging, educating ourselves and connecting with others around the world who might be able to share some of our fears and share some of our hopes and certainly our wins, it's going to be incredibly important. I sincerely appreciate the time that you took today, Cam, and we'll have to catch up soon and thank you for sharing your contact information so that others can really thrive on the energy that you have. We really appreciate you.
Cameron Upton: Thank you.