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Across cancer services in Greater Manchester, amazing work is happening every day. Frontline staff, managers, clinical leaders and people affected by cancer work together with the simple focus of making sure that every person throughout Greater Manchester is able to access a world class cancer service.
This podcast is all about sharing some of the work going on with the wider Greater Manchester Cancer workforce – that’s thousands of people across all areas of Greater Manchester, working in many different roles - and giving some of the fantastic people who do that work the opportunity to share their experiences with everyone.
In each episode, presenter Steve Bland (from the BBC podcast You, Me and the Big C) will focus on a different topic and talk to some amazing guests so if there's anyone you'd like to hear from or a topic you want to see covered, please get in touch.
For more information about GM Cancer visit www.gmcancer.org.uk.
Ep5GENOMICSfinalwav
Fri, Jul 19, 2024 9:45AM • 28:25
SUMMARY KEYWORDS
patients, cancer, tests, genomics, treatment, genomic tests, genomic testing, people, cancer patients, targeted treatments, alteration, lung cancer, event, work, years, genes, types, tumour, cancers, somatic
SPEAKERS
Steph Gooder, Steve Bland, Matt Krebs
Steve Bland 00:09
Hello, and welcome back to the GM Cancer Podcast. I'm Steve Bland and in this podcast we take you inside cancer services right here in Greater Manchester. Now this is another episode in our series looking at innovations in personalised care that are making a real difference to patients here in Greater Manchester and this one is all about genomics.
Matt Krebs 00:35
Thanks very much for joining me this afternoon to talk about genomics in the North West and in Manchester. Let's just have a couple of introductions so people know who we are. Do you want to go first Steph?
Steph Gooder 00:48
Absolutely, so I'm Steph Gooder and I am the Macmillan Lead Cancer Nurse at Tameside General Hospital.
Matt Krebs 00:56
Great, thank you and I'm Matt Krebs. I'm a Medical Oncologist at the Christie. My role here very much around being the genomics clinical lead for the North West Genomic Laboratory Hub, which sounds like a mouthful. But the Genomic Laboratory Hub or the JLH is where the genomic tests are done in the North West region for cancer patients. So I have input into how that happens. And who for and the processes around that which we can talk about.
Steph Gooder 01:22
So that makes me my first question then makes me think, are you a doctor, then who as a medical oncologist, who sees the patients? Or are you a scientist? Because it sounds quite sciency?
Matt Krebs 01:35
Yeah. So a bit of each. So my clinical practice is around clinical trials actually developing new medicines for cancer patients, particularly in lung cancer, but actually across many cancer types. And we build into that a lot of genomic testing. So it sort of goes hand in hand, because we're trying to look at the genomics of a patient's cancer. So we can look at them as an individual. And if there's something in the genomic tests that tell us if they might respond to a certain drug more than another, and then we can pick from our experimental treatments, and try and match them up with something that's relevant for the genomic alterations if they have any. So my clinical work is very much focused around drug development, cancer patients, building in that genomic testing, but because of my interest in I have taken on these additional roles of trying to embed genomics more broadly. So it's not just patients who are coming for trials, but making sure that all cancer patients have got the right access to genomic tests in the region. So it opens up the right treatment options for people.
Steph Gooder 02:45
Okay, because for me, I'm really new to genomics, because as the lead cancer nurse, I oversee, the CNSs at Tameside. But historically, I'm a HPV nurse specialist. So I did hyperthermal pancreaticobiliary, looking after patients with liver and pancreatic cancers, and genomics hadn't quite made it to that tumor group when I was still working clinically. So my first experience of learning about genomics was attending GM Cancer's event last year, the educational event around genomics. And I know we've spoken about this before, but I attended that really with some trepidation. Because I thought this is not something that I'm going to understand. It's something that will undoubtedly go over my head. Because I'm not particularly science minded. But of all the events I attended last year, I went to a lot of education, events, and a lot of cancer conferences. GM Cancer's genomics event was by far my favourite, because I just felt that it was pitched at exactly the right level. And I came away, I went in knowing nothing, and came away knowing something. And so I really enjoyed it. But it does make me wonder, when you try and have conversations about something like genomics with a patient, is that quite challenging? Because even as a healthcare professional found that quite, you know, a bit scary, how do the patients receive this?
Matt Krebs 04:16
I think you raised some really good points. And first of all, I'm glad you enjoyed the events and sounds like we pitched it right around the education and you know, the education is really, really important, both for the workforce, which perhaps we can come back to and for patients. I'll try and address your question. So certainly my practice for research patients. We have a conversation around they're quite relatively top level around we want to understand more about their cancer. And we can do that by looking at the DNA and looking for any faulty genes, and then using that information to try and match them to a relevant treatment. So we keep it relatively top level. And I think patients do get the general concept of what we're trying to do. I think the detail will be a bit bespoke, depending on the patient. So there are some who are very savvy about it and will want to know lots of detail, and others who really, it goes totally over their head, as you know, as perhaps you've described as that, that sense of what does all this mean. And I think that's important to us as clinicians and the healthcare workforce that we both arm ourselves with enough knowledge to understand about what the genomic tests mean, and be able to explain it in a way to a patient that is clear and relevant to them around possible treatment options, without necessarily bringing in all the complexity of what the tests are, and the multiple results that can come up a lot of which may not be relevant for the patient. So there's a lot I think, to do to educate workforce patients, and really make those conversations bespoke, depending on the individual. You I guess now you will have more experience yourself and interacting with patients around genomics, what's your experience been speaking with patients and how much they want to know?
Steph Gooder 06:15
So in my role now because I don't work clinically and I oversee the other CNSs is you work across all the different tumor sites, I think what was interesting for me was that on the day that we, that I attended that education event, two of my lung cancer nurses, two of my very young, dynamic lung cancer nurses came with me to that event. And they came at it from a very different angle, because they're already doing genomic testing within their service. And so they already had an understanding of it, which I didn't, and they had more of an understanding of how it worked in practice, and how it applied to their patients. And so they approached the day, they enjoyed the day just as equally as I did. But I felt like they came at it from a completely different angle and took something different away from it. And certainly from talking to them. And some of my other teams, for example, my colorectal team who were doing genomic testing, I don't, there isn't an overwhelming amount of feedback that the patients are struggling to understand. But I suppose if you look at it, in a broader sense, none of the treatments options that are explained to our patients are particularly straightforward, whether you're talking about chemo or radiotherapy or surgery, it's all quite complex information. So I suppose this isn't any different.
Matt Krebs 07:39
Yeah, I think you're raising a good point that when patients are going through the diagnostic process, and it's all very new information, there's such an overwhelming amount of information isn't there about everything, adding in complex discussions around genomics might seem a bit scary, and that's why I think it doesn't need to be ignored. I think it's part of the diagnostic process and should be considered that way. But it can be just given in a simplistic way of this is part of the test we need to do. It will help us make the right decisions about the right treatment for you. And we'll feed back relevant information. And I think that in itself is sufficient. But you know, this, perhaps this leads on to another point around how do we better embed genomics routinely for all cancer patients who are eligible? And just to explain what I mean by that. The NHS introduced a new genomic medicine service around 2018. And with that, they have like a menu of tests that are available for cancer patients, we call it the Genomic Test Directory, which you can look up online, you can just Google it. And for each cancer type, it tells you the different mutations or different genomic mutations that should be tested for each cancer. So for lung cancer, or hepatobiliary, or breast cancer, there's a list of genes that should be done. And we've been trying really hard to do nationally, but for us, of course, locally in the North West and in Manchester is around how do we work with the different disease groups, the relevant people to make sure that genomics is on the radar. So just as you have your CT scan and your biopsy and various other tests that you need, genomics has to be part of that.
Steph Gooder 09:33
So my understanding was that currently, we're only using genomic testing in lung, colorectal and gynae, am I wrong? Is it being used more widely than that?
Matt Krebs 09:49
It is. It is much wider than that. Yeah. So if people are interested, you can go to this test directory and pretty much almost almost all cancers I'd say, there is something on the test directory that should be tested for those patients. So it is much broader than just those three cancer types mentioned. And what's interesting is, it expanding as well. So as new treatments become available on the NHS, so called targeted treatments that are focused against particular faulty genes, the test directory expands once a year or so for new things to come on board that might include new cancer types as well. So, yes, it's much broader than just a few disease types.
Steph Gooder 10:32
So in terms of the targeted treatments then, if we can test for quite a lot of cancers, are we already offering targeted treatments for a lot of different tumour groups? Or is that still only been rolled out in certain areas?
Matt Krebs 10:49
So yeah, good question. The test directory genes are linked to reimbursed treatments on the NHS. So there are certain cancer types like lung cancer where type two therapies are very well established. And there's other cancer types like hepato-biliary, where a few years ago, it wasn't. But actually now, there are some type two treatments available, excuse me, excuse me. So now it's become, for example, routine to test for FGFR mutations in hepatobiliary cancers, because there's a treatment available specifically for that patient group. And I could give you other examples, for example, in breast cancer and prostate cancer. There are there are a number of type two treatments across various different cancer types, where we should absolutely be testing for these genes for all patients to give them those options. And that's where what we've tried to do is go out to the different disease teams into the sort of oversight committees for each disease team, and just talk to them about what's available for their cancer type. And, and really give the onus on them to think were best in the pathway, does it fit to make sure we get these tests done for all our patients? And I would say the earlier the better, to make sure you're opening up all those possible treatment options. Does that make sense?
Steph Gooder 12:17
Yeah, yeah, it does. And that's something that that I wasn't aware of even even having attended the education day, I still thought it was still not so much with the testing. But certainly from the targeted treatments. I didn't perhaps think we were as far forward as we possibly are.
Matt Krebs 12:34
Don't get me wrong, its certainly not all cancer types. But there are certainly a lot of emerging type two treatments in many cancer types, I would say the other benefit of genomics is sometimes it isn't just about the test, saying whether somebody will respond to a certain targeted treatment, it could actually be the opposite. There could be if you've got a certain gene, you will not benefit from a treatment. Examples in colorectal cancer, if patients have a K RAS mutation, they will not benefit from a certain type of treatment. And that's really important information to know upfront, as well. So it can actually be either way. So I guess that brings us to other applications of genomic tests that you're going to ask me?
Steph Gooder 13:23
Well, I think on the on the day, when we were first met at the event, one of the conversations we had was about workforce and how we engage the workforce in this and I think that is going to be really key because as you can see, I feel like I was invited on this podcast, because I'm the person who knew the least in GM about genomics. And they wanted to illustrate that if even I could, you know, pick it up then any body could. And you know, I've been working in cancer now for 12 years. I've been a nurse for 25 years. But I didn't know that much about this, despite that. And so I do think there is quite a way to go to engage the workforce. And I think if we are going to take the patients along with us, and ensure that they get the best information and the best, you know, support and guidance with this. It's important that we all know, you know what it's about. And I think that is a challenge. So certainly in my role as a lead cancer nurse. So across Greater Manchester we have we have a network of lead cancer nurses who meet and we kind of oversee things. So I think there's something there for us to do as leaders of the CNS workforce and the clinical nurse specialist workforce to kind of ensure that our teams are knowledgeable about this. And I certainly think for you guys accessing the pathway boards, the individual pathway boards, that's a good way to ensure people you know, because oftentimes people I think are so busy during the day to day that people don't always, you know, keep up to date with the new things in the way that they should.
Matt Krebs 15:06
Yeah, I think that's right. And yet through through GM Cancer we can't do them all at the same time, but we're trying to get to as many of the pathway boards we can to try and help and, you know, again, for cancer types like lung cancer, it's been so it's been embedded for so long, it's much easier. Yeah, it's really for some of those newer indications like prostate, like hepatobiliary, like some of those where people have been less familiar and perhaps a little bit frightened about it. It's how on earth do we approach that and we want to take some of that fear away, and really take it back to simple concepts of what we're trying to achieve, making sure we're allowing patients the opportunity to have the test so they can access the right treatments. And also to say, there's plenty of support as well. So through the Genomic Laboratory Hub, we can always take queries around tests, for example, if people are uncertain about it, we run a genomics tumour advisory board or a GTAB, where people can bring genomic tests to that meeting a bit like an MDT, but for genomics, so you can bring the test along as they're not quite sure what this means. And we can help interpret whether something is relevant. And there's also just to throw more acronyms and more bodies. The GMSA, the Genomics Medicine Service Alliance sits very much alongside the JLH is a lab where the tests are done. But the GMSA is also responsible for helping with education, and then embedding tests into the pathways as well. So the GMSA do a lot of work around education. They've got various podcasts like this. They've got links to various training websites. So there's plenty of things out there to help educate people. It's just about trying to bring people on board and signpost and reaching the right people. I think that's the biggest challenge actually.
Steph Gooder 17:11
Yeah. Do you think that GM Cancer to will do that event annually? Or that they'll do it again?
Matt Krebs 17:18
Well I think that was a lot of work for the organisers involved. Yeah, but I think every two years, hopefully, don't hold me to that. I think that's what we're looking at. Plus, you know, additional educational events that we can do. But again, even things like that, we can only reach people who are engaged and want to come to that it's as also how do we how do we reach the people who are perhaps less engaged or don't have the time to come to an you know, a full day education event or another day education event? And making sure we've got opportunities for them as well? Yeah. And I think all we can do is just keep the conversations open, try. And we try and keep engaging people and educating people as we can. I think, you know, patients, having knowledge about genomics as well is really critical. Because if we can get to a point where our patients are asking the clinical teams are having this test, then that will drive a lot as well.
Steph Gooder 18:23
Absolutely, and I think the other thing that is really engaging for the clinical staff is, for me, hearing the patients on the day speak about the impact that genomic testing, and then the subsequent targeted treatment that they'd had, had on their outcome. So there were two patients, speaking about the impact on their small cell lung cancer, which without genomic testing, and targeted treatment, would have had a very poor prognosis. And they potentially would have lived six to 12 months. And I think both of their patients who spoke where were eight years post treatment, that's really powerful, because that's massive. And I think as as a clinician, and as someone working with cancer patients, absolutely. That's what you want, for your patients for them to, you know, have such better outcomes and better experience. So I think that's a really good way to engage is hearing those stories for patients and for staff to hear about the impact that it can have.
Matt Krebs 19:26
Yeah, totally, totally agree. And actually, you know, we've spoken a lot about standard of care, testing and making sure patients have access to those standard treatments, like those examples, you mentioned, but also there's research opportunities. So if people have exhausted sort of standard treatment options, and we find something in the genomics, that there may not be a standard treatment for but there could be a trial option available. And again, I think people are very engaged and keen to take part in trials if they're eligible and if they can, so, again, though, can open more doors. I was gonna say, did you have a particular example you wanted to share yourself or I can share examples from some of our patients how they benefited?
Steph Gooder 20:15
Yeah, go on, because I obviously heard the small cell lung cancer examples at the education event, there were two separate patients, both of whom had great experience. So I'd be interested to hear any others.
Matt Krebs 20:28
I think that they're very similar, really, I think there's several examples I can think of, but perhaps I'll make it slightly more generic because it follows a similar pattern of we do the genomic tests, we find something that we call actionable. So there's a - I'll use a clinical trial example, because I do clinical trials. And I can think of a particular patient who was in her 30s, actually, with lung cancer, so really young to have lung cancer, patient had some chemotherapy, but progressed straight through that. And here was a 30 year old patient with two young children who progressed through standard treatment and thinking, you know, my goodness, is this the end what, you know, surely there's more? And for her, we did some genomic testing, we found something called HER2 alteration that typically you can see in breast cancer, but this actually happened in a lung cancer patients. And we could access a HER2 directed treatment in a clinical trial for her. And she had an amazing response. And that lasted for at least 18 - 24 months, she was on that trial, the disease had shrunk down and been really nicely controlled. And actually, by that point, after a couple of years, she did progress well, the cancer got worse after a couple of years. By that point, there was another trial with a new HER2 directed therapy, so she was able to go onto that. And, again, I think that just exemplifies the benefit of doing these tests and all the time new treatments being developed by the drug companies as well.
Steph Gooder 22:20
In terms of percentage wise, how many people end up having had the testing ended up being eligible for targetd treatment?
Matt Krebs 22:30
Yeah, that's also a good question. In terms of standard treatments its probably a relatively small amount. It depends on the cancer type and the indication. Let me let me give you a sense, let's go with lung cancer. Around about 15% of patients have something called an EGFR mutation, for which the standard treatments available, that's probably the most common one. And then there's a whole raft of others; ROS1, ALK, RET, NTRK, all of which are actually only 1% or 2% of patients. But even though that's relatively low frequency, if you happen to be one of those 1% or 2%, who has that genomic alteration, there are treatments available and you have dramatic benefit from them. The examples we've described are really, really critical. It's being done. And I say the option hopefully of opening up as a treatment options as well through clinical trials. If there wasn't something standard available. It's relatively small numbers.
Steph Gooder 23:33
But like you say it is the impact for those patients.
Matt Krebs 23:37
Totally. The other thing I think I wanted to get across as well was the difference between what we call somatic versus germline alterations. I just wanted to touch on that, perhaps just in the last couple of minutes.
Steph Gooder 23:55
Yes because that was part of my learning. Because, am I right in thinking that it is the somatic genes in cancer that we look at?
Matt Krebs 24:04
Predominantly. So it's mainly the somatic things we are interested in. So just to explain it somatic is when we're talking about the cancer itself, the DNA within the cancer and what's gone wrong and that actually is quite different from your normal DNA that you inherit from your parents that we call our germline DNA, which may be totally fine. We've not inherited any risk of cancer. But the cancer itself when it develops, you can get mutations in the cancer. And we're very much focused on that DNA within the cancer itself and what's gone wrong, to try and look for treatment options for those patients. And we call that somatic alterations. And that's mainly what we're looking for, for cancer patients. There are a much smaller percentage of patients where there can be something inherited from the family. And that's where we that's where we start thinking about the germline. So, that's the normal DNA you inherit from your mother and father, perhaps a good example is BRCA, that many people have heard about, for risk of breast cancer and ovarian cancer, that can be inherited through generations. So if you have a family member with a BRCA alteration, or very strong family history, for example of breast or ovarian cancer, then it's really important we are doing those germline tests for those families, to make sure we can think about preventative measures for cancer as well. So Angelina Jolie is a good example of someone famous with the BRCA alteration. And being armed with that knowledge then helps plan for your children. And obviously, for yourself in terms of future cancers, in terms of preventative measures, or screening, to make sure that if there was a cancer was picked up early, so the inherited or the so called germline testing is really important. But it's for a much smaller percentage of cancer patients, it's a really small percentage. For the vast majority, it's the somatic, that's really important. So that's what's going on in the cancer itself, that could open up treatment options for patients.
Steph Gooder 26:14
I think it'll be super exciting to see where we are in five years and see where we are in 10 years. And I think this will just change the landscape of the way we treat cancers and the outcomes that we have for people.
Matt Krebs 26:28
You are totally right. And actually, on that point, one of the big developments that's coming through that is really exciting is we typically have done, or historically have always done these genomic tests on a biopsy sample. So it requires a needle into the tumour and you do the tests on the DNA from that. There's now developments that you can do a lot of these tests from a simple blood sample. We call it circulating tumour DNA or CT DNA. And that is starting to be introduced through the NHS, they've currently got a pilot in lung cancer. And I can envision over the next five years, certainly 10 years, there will be liquid biopsy tests, blood tests available for these patients to do it in a much more simple way than even the biopsy. So that's also a really exciting development. I think that's coming through.
Steph Gooder 27:24
Yeah, absolutely. And so much less invasive for the patient which is great.
Matt Krebs 27:30
I think yeah, we probably ought to wrap up in terms of the time here. It's been a really, really interesting chat. Thank you, Steph.
Steph Gooder 27:40
Tnank you for making it so accessible, because as I say, I think you're very good at putting it across in a way that makes it easily understandable, which has been helpful. Thank you.
Matt Krebs 27:52
Thank you. Thanks for your time.
Steve Bland 27:57
If you enjoyed the episode, we've done loads and loads of other topics in this podcast, and you can find them all wherever you get your podcast from. If you want to find out more information about the Alliance, you can find the GM Cancer Alliance on social media. And we're back next week with another episode.