HRR Mutation Testing in mPC
Transcript: Patient views on genetic testing in mPC
Tony Collier and Alicia Morgans, MD, MPH
Interview recorded October 2025. All transcripts are created from interview footage and directly reflect the content of the interview at the time. The content is that of the speaker and is not adjusted by Medthority.
- [Alicia] Hi, and welcome to another episode in "Expert Exchanges" looking at HRR in metastatic prostate cancer. I'm so excited today to talk with Mr. Tony Collier, who's going to be sharing the patient perspective on the impact of genetic testing in prostate cancer. Thank you so much for being here with me today, Tony.
- [Tony] It's a great pleasure.
- [Alicia] Wonderful. You know, Tony, we have talked many times before, and I think it's important as we lay the stage for our conversation that you are one patient, but you really have experience from speaking to many patients, many men who have talked with you about their experience. And so I think this is helpful context as we talk through things. And I wonder from your own personal experience and certainly from that experience in talking with others, if you can share how genetic testing has shaped your journey with prostate cancer, especially as you think about the way that prostate cancer is diagnosed and the way that people can sometimes even agonise over treatment decisions and their overall wellbeing, the emotional impact of going through that with or without genetic testing. Can you share some of that please?
- [Tony] Yes, I think genetic testing is an important part of the process, and I think all cancer patients should be offered genetic testing prior to commencing treatment. I think unfortunately it could be a double-edged sword because it always concerns me a little bit that some men will panic about finding out they've got a genetic mutation because of the impacts on their families. But I think from my own viewpoint, because prostate cancer carries a high familial risk, as well as a genetic risk, it would be good to know the extent that my son and grandson's risk is increased by my metastatic prostate cancer diagnosis. So I think it's a really important part of shaping treatment options, and I think it's a really important part of putting people's mind at ease. Certainly in my own case, to discover I didn't have a genetic mutation was positive in some respect and negative in others.
- [Alicia] Yeah, thank you for that because as you said, there are benefits in knowing, actually, I think either direction, whether you have the mutation, whether you don't have the mutation, for decision-making around treatment, for decision-making around informing family members and steps they may take. And this can be really important certainly for the patient, but also for the family in many cases. And I wonder, this podcast is going to be listened to by people from different parts of the world who have access in different ways to genetic testing. How do you think about the timing of genetic testing? Do you think that this is something that's important to do early? Is it something that can wait? Does it depend on the stage of cancer when it's diagnosed? How do you think about that from a patient's view?
- [Tony] Yeah, I think when you are diagnosed with prostate cancer or any cancer, I'm sure you feel a little bit like a rabbit in the headlights and very little actually sinks in. It's very hard to take in all the information that you are being given. So I don't think that genetic testing is something that would be right at the start immediately after diagnosis. But I think it's something that would be really important before treatment options are discussed and finalised and agreed upon, because I think it would certainly influence treatment choices. And I think it's a conversation that has to be clinician-led rather than patient-driven, but almost certainly not immediately after diagnosis, but before agreeing on treatment options, certainly.
- [Alicia] Yeah, that makes sense. And I know you mentioned that you had testing, you did not have a positive result, but as I mentioned earlier too, you've spoken with many men in your role as a patient advocate about this. Can you share what you think would be helpful to know? For those individuals who have had a positive test result, how can clinicians best deliver that information and what can they share to help people process what is probably really stressful share?
- [Tony] Yeah, I think it's a very difficult one. I think the important thing from a patient is to hear and understand all the different options available to you. And I know that in my own case, I was very concerned about going down the genetic testing route, but because my sister had breast cancer and ultimately unfortunately passed away because of it, we both thought it was an important part of the process that we were tested because we wanted to make sure about the familial risk to our children and grandchildren. And I think it's really important to have that conversation with the clinician. And as I said before, I think it should be clinician-led and reasonably early in the process when we've still got choices available to us.
- [Alicia] Yeah, thank you. You know, thank you again for saying that it's important for clinicians to lead these things. And I agree and I have been fortunate to work in a place where this is a priority and also a place that I think listens to what I have to say. We have the capacity to do that, to take the requests from physicians to add on services if they don't already exist. But some clinicians work in a situation where access is more limited. Do you have suggestions for them or suggestions for patients who are trying to advocate for themselves, knowing of course that clinicians should bring this to them, but perhaps who see a doctor who has not?
- [Tony] Yeah, I think it's really important that men newly diagnosed have options to speak to other men who have been along the same pathway that they're about to go on. And I think certainly in the UK we have a number of charities that offer peer-to-peer support. And I'm a trustee of a charity that offers 150 support groups across the UK. So we very much advocate for men who come to us and say, "I have no idea what's going on. What do I do?" So I think, you know, my first port of call for a man newly diagnosed would be to try to talk to another man because you don't know what you need to ask. You don't know what you need to know. And so I would never have known when I was first diagnosed that prostate cancer was potentially caused or made worse by a genetic mutation. So I would never have known to ask. But I think now that I'm in the situation where I advocate for other men, if a man asked me about it, I would say, "You need to talk to your clinician about genetic testing." Because the slight problem with that is historically the cost of genetic testing has been quite high. And in the UK, the National Health Service I think struggles to finance that cost. But I think cost is coming down, it's becoming much more the norm. And in my area of the UK we now have a situation where cancer patients newly diagnosed are genetic tested for a small panel of genetic mutations relevant to their cancer. So things are improving in that respect. So my first guidance point to a another patient would be to try to talk to another patient. There's lots of really good information out there. There's at least two charities in the UK offering peer-to-peer support. I'm sure it's the same around Europe and the USA. So try and find a patient to talk to, so you know what questions to ask your clinician. And I think it's really important. Unfortunately, some men are not very good at self-advocating. So I think it's really important that if you are not that good at speaking up for yourself, that you do find someone else to speak up for you.
- [Alicia] That's great advice too. I love that. And I think in our clinic or in my clinic, I often reach to the family support, whether it's a partner, whether it's an adult child, a friend, whoever it might be, to learn more about what's needed, what those conversations are when the patient's not in clinic. And that can be incredibly valuable. And to shift gears in that direction a little bit maybe, to focus on the family, we know that genetic test results do affect family members. What information can be helpful for patients as they're trying to understand not only the implications for themselves, and we'll get to treatment in just a moment, but the implications for their family and the need for potential testing if there is a mutation present?
- [Tony] I think it's the biggest fears when I went through the testing process was anxiety about hereditary risk and in particular whether it might increase my family's risk of cancer. So I wanted to know all about the potential risk to my children and grandchildren. But I think it's an absolute must for me that we think very clearly about what the man needs to know, how he needs to understand it, how he needs to relay that to his family. And I know that we've spoken about this before, but I think it's an absolute must for counselling prior to genetic testing. I'm sure you agree with me, but you know, my family have had so much to cope with already because of my diagnosis, and I really wouldn't want to burden them with more unless it was absolutely necessary. And I would personally, and I did need clear guidance, what to ask, what to say, and then if I did in fact have a genetic mutation, how I would relay that to my children. And I also think that for me it was very important that my wife was part of that process. She's been involved at every stage of my cancer journey so far. But I would've liked her to have been very much involved if I had in fact a positive mutation. But I do think actually if I went down that route of having counselling, I'm not sure how I would deal with relaying that information to my family. So what would your advice be to a man in that situation who's just found out he's got a genetic mutation? How would you advise that man to deal with that in a family discussion?
- [Host] Well, thank you for putting that back on me, Tony. I know these hard questions importantly should involve the clinician, and so thank you. I think that your advice about involving your wife or someone's partner in that from the get-go is a really good way and strategy to then think about disseminating that information, because the person himself who has that mutation may carry all kinds of feelings around that, including things like guilt and perhaps fear for himself and for his family. And importantly, there are treatment options. And so I think the clinician can really allay some of those fears in terms of sharing that these treatment options can really shift the trajectory of the cancer, can provide a targeted and personalised approach and hopefully return those outcomes back to something that's more similar to the way that we expect cancers without these mutations to behave. And then leveraging the partner or that spouse or support person to have those conversations with a patient, with the family. And also working with a genetic counsellor can be really helpful too, thinking about the language that one can use to both share what can be stressful information, but reassure that once we know there are things we can do in terms of differential screening for family members, for cancers like breast cancer, ovarian cancer, and thinking about early detection, even with things like pancreatic cancer, which we are increasingly hopeful we'll have good screening methods for. So yes, the news can be challenging and certainly stressful, but especially when you're giving stressful information with an idea about what you can do next to make things better. That to me is one way to try to mitigate that and always leveraging those loved ones like a partner or a spouse, really, really important. And to shift gears a little bit towards treatment, do you have any thoughts, do you know anyone who's been on some of these targeted medicines? We're really talking about PARP inhibitors for the most part. Pembrolizumab in some parts of the world can be used to target alterations that lead to defective mismatch repair. But most of the mutations that we think about with genetic testing really are directing us to PARP inhibitors. Do you have thoughts, you know, how do you advise people to make decisions when it comes to considering a PARP inhibitor or a targeted treatment? And how do you think through that, especially as it comes to considering support around side effects that may come with those treatments?
- [Tony] I think one of the most important things for a patient in that situation is to understand the treatment profile, how it will impact them on their quality of life, how it will potentially improve their longevity, life expectancy. I think those are really important points. And I think men who have moved on to PARP inhibitors, I think typically are moving on them late in the pathway rather than early in the pathway. And I do wonder whether we might see them being much more effective if used earlier in the treatment pathways. So, and I know men who've been on PARP inhibitors, and some men do reasonably well and some don't, but I think that's the case with all prostate cancer treatments. And I'm sure you come across that as well in your practise.
- [Alicia] Yes, I have, and some of the side effects that I usually think about in terms of supporting people to have the best experience are things like strategies around anemias, low blood counts, making sure that we're monitoring closely to catch those early, provide supplementation if those anemias or low blood counts are related to other things beyond the treatment itself. And also ensuring that we talk about things like diet and exercise strategies to combat fatigue, which that's a side effect certainly of most of the treatments that we give, but certainly can be something that we experience or the patients experience when they're taking PARP inhibitors. So being upfront, being clear about some of these side effects so that people can be proactive about their interventions, I think is really helpful. And also having conversations around what's important to the patient and making sure that the investment in these kinds of treatments is something that is in their best interest, that aligns with their goals, that aligns with what we expect, what we all expect in terms of their life expectancy too can be really important. And I would say for most people, treatment with a PARP inhibitor is going to be tolerable. It's going to be something that they can adjust to and work through those side effects to find themselves actually living quite well with that treatment. But it isn't for everyone, and understanding that is also an important part of those conversations. When you talk to somebody who is thinking about this genetic testing or clinicians who are hoping to include this in their care, I wonder if you could share just, you know, one main message, one final insight that you'd like to leave everyone with when it comes to this, whether it's about genetic testing, whether it's about applying that to treatment or considering family members. What would your message be?
- [Tony] Yeah, I think there's lots of giveaways that I would give to men who are newly diagnosed with prostate cancer and just going through the start of that process. I'm very keen that we try to close the gaps in care that I've seen exist in the eight years since my own diagnosis. And the biggest gap in my cancer care has been holistic care and also recognising that our holistic needs change. And my message to clinicians is always to remember to treat the person, not just the cancer. And I think for a man newly diagnosed, I want them to take messages of hope from people like me, but I don't want that to be false hope. I've been in a situation where I've counselled men and said, "You're gonna be fine." And then they died two years later and I thought, "Actually I've given his family false hope." So I think it's important to be honest, and give hope, but not false hope. And I think then there's lots of myths around prostate cancer that I think we should try our best to dispel. And I'm sure you've probably heard this as well, Alicia. "It's the good cancer to get." Well, no cancer's a good cancer to get. "It's only a problem for older men," and I hear that all the time. And then the other one I get is, "You'll probably die with it rather than of it." And I think all those are messages that I think we need to dispel. But I think the most important point, the message for men and the message for clinicians is whether it be chemotherapy or a PARP inhibitor or immunotherapy, we just need to make sure we are managing that man's holistic needs properly and his family's holistic needs and recognising that those needs change as times go by. And I know that we've had conversations in the past about things like the importance of exercise, and I think, you know, 10 years ago, I'm not sure clinicians were very keen about suggesting exercise as a really good option. Thankfully, things have changed, and I know that you are very keen on the value of exercise for cancer patients.
- [Alicia] Yes, I would agree. Whether it is for better physical health and function, whether it's for better mental health, even if it's just a way to maintain some of that muscle strength that can be lost during these treatments, I think that physical activity is so important. And as we do care for a patient with a holistic approach, as you said, including things like exercise, genetic testing is absolutely a part of that. And it's so appreciated that you took the time to talk that through from a patient's perspective, helping clinicians and also helping patients raise their own awareness of the importance of this key aspect of prostate cancer care. So I appreciate your time today, Tony.
- [Tony] It's a pleasure. Thank you.
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