32 – NHS-Galleri Trial: One Participant’s Journey Through Early Detection

Rayshawnda Madison:
Welcome to the Cancer Signal, a podcast by GRAIL, where we share the stories, science, and the people behind multi cancer early detection.

I’m excited to be joining as a host of this podcast this year, as I wanted to take a moment to introduce myself to our listeners. My name is Rayshawnda Madison and I lead culture community, and employee engagement at GRAIL, where I focus on building meaningful employee experiences, strengthening culture, and helping connect people to the mission that drives our work every day;
detect cancer early, when it can be cured.

What I love most about this podcast is that it gives us the opportunity to go beyond the headlines and hear the very human stories behind innovation. From patients and advocates, to scientists, leaders, and change makers, we’ll explore the conversation shaping the future of cancer detection, and what it means to create impact through purpose driven work. Thank you for listening, and I’m excited to learn alongside all of you in the episodes ahead.

Today, I’m honored to be speaking with someone with first hand experience with one of the largest cancer screening trials in the world—the NHS-Galleri trial.

Before we jump into our interview, I want to give some background information on this trial.

The NHS-Galleri trial is a large, randomized controlled study in England evaluating whether a blood-based multi-cancer early detection test can identify cancers earlier when used alongside existing cancer screening. With more than 142,000 participants enrolled, the study is designed to assess the test’s impact on cancer stage at diagnosis and its potential role in population-scale screening.

This trial had two arms – a control arm, whose members’ blood was not tested, and the screening arm, whose blood was tested. Participants did not know which arm they were randomly assigned to – unless their blood draw resulted in a cancer signal detected. One of those people is my guest, Rob, who is going to talk to us about his participation in the NHS-Galleri trial. Welcome to the Cancer Signal Rob. Can you tell me a little bit about yourself, where you live and what you do?

Robert (01:03)
Thank you.

Yeah sure, I’m a carpenter by trade so I do a lot of work outside. I live in the Midlands in England. So I’m 60 years old yeah married couple of grown-up kids so yeah yeah life’s good.

Rayshawnda Madison (01:26)
Nice. Could you tell me how did you find out about joining the NHS-Galleri trial and what motivated you to sign up to participate?

Robert (01:39)
Well, I mean, originally it was just a letter through the door, through the mail, and just, would you be interested in taking part? ⁓ I lost both parents to cancer, so obviously anything cancer related, it’s got to, I’m more than happy to help out and try and find the way forward. So when I was offered a place on the trial, didn’t take much sort of thinking about it, I was on it straight away, so more than happy to take part.

Rayshawnda Madison (01:48)
Yeah. I love that you, one, already have this closeness to cancer and instead of it making you feel like it’s this thing just like that has happened in the past, you’re proactive wanting to learn more. What is the path forward? What does the future kind of have for this? So I really love that about your story. You know, the trial takes three blood draws over two years, about 12 months apart. Can you tell us what happened with your first blood draw?

Robert (02:42)
Well the first time, it’s sort of a, I went to my local swimming pool and it’s set up on the car park, you know, like a mobile blood. So I gave blood the first time round, couple of weeks later had a phone call to say thanks for turning up, thanks for donating, and we’ll see you in 12 months time. So nothing really, it was just, you know, was very simple, very quick, very easy, and a phone call just to say no problems, thank you, and that was it. So off I went.

Rayshawnda Madison (03:10)
Nice. What were your feelings like before you took it and after? Were you wondering what the results were? Was it something that kind of lingered? Yeah, go ahead.

Robert Higgs (03:20)
Yeah, I think, mean, whenever you’re tested for something, you’re always sort of thinking in the back of your mind, perhaps they’re going to find something, because that’s the idea of the test, isn’t it? But I didn’t know whether I was in the control group or the test group. You don’t know that. So you don’t even know whether your blood’s been tested or not. Could be in the control group. So I wasn’t too concerned. I mean, I had no symptoms of anything. I was perfectly fit and healthy. I had no symptoms at all.

So it didn’t really cross my mind that there was going to be a problem. Didn’t even think about it. Just thought, you know, I’m okay. And so when they rang me to say thank you, there’s nothing more to say I wasn’t surprised really. So I was just like, great, that’s it. Thank you.

Rayshawnda Madison (04:04)
So then in year two, what happened with your second blood draw?

Robert Higgs (04:10)
Well that’s when obviously things changed, the same again, I gave my blood, but this time phone call to say there’s a cancer signal, it’s flagged up a cancer signal. Obviously with the Galleri test, I mean, they can pretty much tell you where they think it is as well. Well the chap on the phone sort of said, it’s in your head. So I mean, that’s a bit sort of confusing for me initially because when I think of head, you think, is it brain or do you know, it could be anywhere, but obviously that’s sort of cranial, I know a bit more about it now. So when they say your head, tends to be ear, nose and throat. So I was a bit shocked because it had flagged something up that obviously I wasn’t expecting. But I said, what happens now? And basically, straight away, there was an appointment made to go and see a consultant at the local hospital to talk me through it and tell me what exactly the next sort of steps were. So I went to the local hospital, saw the consultant who was great.

Rayshawnda Madison (05:07)
Mm-hmm.

Robert Higgs (05:09)
I explained about the trial. I explained what had happened. And, you know, he was like, okay, so we’ll follow it up. So I had various tests, MRI scans, I had a CT scan. I had, because I thought it was obviously base of tongue area. I mean, you know.

It was showing a bit of cell activity on the MRI scan so they thought it was this area but I mean when he had a panendoscopy where they looked down your throat with a camera and had biopsies and they couldn’t find anything nothing just kept coming back there’s nothing there we can’t find anything. … nothing there as far as I was concerned. So they pretty much sent me away and said it could be a false positive. It could be the test has picked something up that isn’t there. So again, away I went, sort of reassured that there was nothing there, thinking all was good. So then obviously.

Rayshawnda Madison (06:20)
And then you were tested again after that, is that correct?

Robert Higgs (06:25)
Well, onto the third lot of blood. So I give the blood the third time. And then obviously it flags up exactly the same thing. So basically they said, so this is like another 12 months later. So go back to the consultant again. So I went back to the hospital again, same consultant and he’s like, what are you doing here? Like, know, why have you come back? There’s nothing wrong with you. We’ve looked for everything, can’t find it. So, but obviously.

Robert Higgs (06:52)
He’s got to scan me again, he’s got to check me over again just in case they’ve missed something first time around, which is exactly what they did. So more scans, more MRI scans, you know, I had all sorts of different tests, blood tests and this. And they still couldn’t really find anything. So he said, one last thing we’re to do again is another panendoscopy. So they’re going to go down the throat again with the camera, take some biopsies. And he said, and then if that comes back, he says that, you know, there’s nothing there, we can’t. But that’s the time they did find it.

Rayshawnda Madison (06:57)
Wow.

Robert Higgs (07:21)
So they biopsied the base of my tongue and they found it then, but I mean, it was that small. When I was shown the pictures of the base of my throat on the screen, left-hand side, right-hand side, they looked identical to me. I couldn’t spot it, but there was a tiny little raised area and they must have biopsied it perfectly. Just managed to biopsy the area where the little raised area was and that was where the cancer cells were. So quite amazing. It had been there probably all the time.

Robert Higgs (07:50)
Second time they biopsied it, got it, tested the biopsy and there it was. So HPV virus, yeah.

Rayshawnda Madison (08:41)
I wanna just take a step back and just talk about more about how did you feel during what feels like a little bit like a roller coaster. So one, hearing that it’s a false and then hearing, this is true. How did you go through that?

Robert Higgs (09:33)
Well, I mean, obviously when all the way through I kept thinking and I was being told that there’s nothing there, we can’t find anything. So it’s sort of, my mindset was there’s nothing there. It’s a false positive, you know what mean? The test has thrown up a false positive. So all the way through, wasn’t until I was called into the consultant final time after the second panendoscopy and when I was called into his room, I knew something then because there was six people in there.

Rayshawnda Madison (09:48)
Yeah.

Robert Higgs (10:00)
So there was some student doctors, there was the consultant, there was a nurse. So these people are there obviously because they’re going to tell me you’ve got cancer, which is totally different to the last time I spoke to him. The panendoscopy before, they were telling me there’s nothing there, we can’t find anything. So just met the consultant, shook my hand, he said, go away basically, nothing wrong with you. The second time obviously it was totally different because I was told we found it, we found this cancer, it’s flagged up, the signal’s there.

Rayshawnda Madison (10:00)
Yeah.

Robert Higgs (10:29)
18 months ago and we couldn’t find it but now we found it. Obviously when you’re told you’ve got cancer then it’s a bit of a shock straight away especially when you’ve got it in your head that there’s nothing there because that’s the way you sort of know got over the last 18 months thinking there’s nothing there, keep getting told there’s nothing there then all of sudden to be told there is something there. But then straight away I mean they put you on the cancer pathway as they call it so straight away. They know what the next step is now they told me where it was, what it was.

Rayshawnda Madison (10:46)
Right.

Robert Higgs (10:58)
That it was very treatable because it was very early, very early stages, which was fantastic. So very small, you know, it hadn’t, they didn’t think it had spread anywhere. So they said, you know, basically radiation will sort it out. But I mean, when they did, they scanned me again and the oncologist was just a bit concerned because one of my lymph nodes down sort of, they thought, looked slightly enlarged. So he basically said it could have traveled to there, I’m not sure, but we’re not going to risk it. So while you’re having radiotherapy, we’ll give you some chemotherapy as well and we’ll blast the lymph node just to be on the safe side. So I had chemo radiation to sort it out. So, but like I say, the treatment was fantastic and because it was so early and I was fit, I had no symptoms, I was eating well, everything was good. So I was going into it, feeling good, feeling healthy.

Rayshawnda Madison (12:03)
How long did you have to go through the treatment?

Robert Higgs (12:07)
I had 30 sessions of radiotherapy and then six sessions of chemotherapy. So over the space of like a month. I had radiotherapy five days a week, Monday to Friday, and then chemo one day a week for the month of February. So for the whole of the month. And then basically I had a couple of weeks after that where it’s probably the worst time because the radiotherapy builds and builds and builds. So even when the treatment finishes for a couple of weeks after that, it’s probably the worst.

Then obviously you start getting better, you start recovering. A month after that I was back at work. So I was sort of well enough to go back. So didn’t take long really. But again, it’s all because it was caught in such an early stage. It was very treatable, very early. So very lucky, very lucky.

Rayshawnda Madison (12:44)
Yeah, beautiful.

So tell me who or what held you up or gave you strength during this time.

Robert Higgs (13:05)
Well, it’s one of those, I just kept thinking like, I just kept thinking how lucky I was, I say, this hadn’t been picked up, this hadn’t been picked up at the trial, I mean, what’s the chances of me going on the trial, then me being in the test group, and then it flagging it up once and there’s nothing there, then it flags up again and there is something there over the period of these two years or whatever it is, and then finding it and being able to treat it.

When, I mean, I could be sat here now and still not know anything about it. I could have throat cancer now and it could be getting bigger, it could be getting worse. I might have symptoms and what not. But just because I was sorted so early on, just made me positive all the way through it. It makes you feel like it’s meant to be. I was meant to be. I thought that somebody up there thinks the world’s a better place for me in it because they’ve sorted me out. So that’s what kept me going.

Rayshawnda Madison (13:56)
I’m so happy that you kept going, Robert. And that’s true, a thousand percent. You know, what helped you feel grounded when everything really felt uncertain? I love what you said around one, feeling incredibly lucky that you’ve been able to like one, know about it before you have symptoms, before you show any signs, you know, before you even have any inkling to it, which a lot times once you get to that stage, it’s a lot of times too late, right?

Robert Higgs (14:25)
Absolutely.

Rayshawnda Madison (14:25)
And so being grounded in those ways was, you know, was it your family? Was it your kids, your wife, anything like that that also just helped you stay grounded?

Robert Higgs (14:37)
Well, my wife was great all through to me because obviously the treatment’s not nice. Radio therapy is tough and I say if you you have it in your in your throat I mean, you know, you lose your taste buds you lose your saliva glands, you can’t eat. So yeah, I was feeding through a tube, you know a peg into my stomach. So not nice, but I mean, but you know the support of me wife and my two kids. They looked after me and you know, I had good days. I had bad days as you do, you know peaks and drops, ups and downs.

But the majority of the time, you just get very tired as well because of the fatigue. So the treatment knocks you about a little bit. So I sat around, I rested, ⁓ I tried to have a walk, just tried to keep as fit as I could, as fit as it would allow me to be, just a bit of exercise. I tried to eat and I did almost right up until the very end, a couple of weeks I couldn’t because I couldn’t swallow. But up until then I was forcing myself to eat just to try and keep me strength up.

I lost quite a bit of weight and stuff, you do because obviously your body changes. But yeah, my wife was fantastic all the way through it and she looked after me. The kids, I didn’t want to ever come across as being too down, because I didn’t want them to see me down, or too ill. So if I had a bad day, I perhaps wouldn’t see the kids, but if I was feeling good and had a better day, they’d pop round and they’d see me in a better light if you like.

Rayshawnda Madison (15:40)
Yeah.

Robert Higgs (16:04)
But yeah, the family kept, yeah. Family and friends, I got lots of friends, I had lots of nice, you know, texts, phone calls from people asking how I was and that sort of thing. So again, you know, it scares everybody. You tell somebody, say to somebody you’ve got cancer, I think they think the worst as well. They think, you know, oh God, it’s a death sentence, but it isn’t necessarily a death sentence. I mean, like I say, for me, you know, it was found early, no symptoms, treated, and then I’m back to where I was almost. So, you know, it’s good to for people to see that as well and realise that there is hope at the end of it, you know what mean? And again, the earlier you can catch it, the better they can treat it.

Rayshawnda Madison (16:43)
Absolutely. And I think that’s a great mindset too. I want to go back to what I said before around you having this kind of mindset to be proactive, especially about your health, especially knowing your history, knowing your parents’ history. And so being on this proactive approach really helps you, one, just build a defense, right? And be able to tackle it while it still can be cured, which is not always everyone’s mindset, right? I think a lot of times when you bring up the word cancer, people can feel like it’s very final.

But I love your story because it’s really about empowering this proactive piece around your health and your care, and also getting curious about your health, right? Sometimes people can feel very final in their health journey. And like I’ve been doing X as many years as I’ve been doing. No need to change, no need to look at anything further. And so I really love your story around being curious, right? Like, yeah, let me try this. Like, what’s the downside to finding out? I really love that because when I joined Grail, you know, so many years ago, in the beginning, I felt like, you know, cancer is one of those things, and sometimes in your culture that can feel very final when you say it.

Robert Higgs (18:01)
Yeah.

Rayshawnda Madison (18:03)
Sometimes people want to know because of that. And I remember our CEO at the time telling me, you know, it’s either good news or it’s good news. It’s either good news that you’re finding out about it early, right, or it’s good news that you have nothing come up. And hearing him say that really changed the way that I thought about it, the way that I talk about it as well.

And so I love to hear that you’ve been doing that as well. I want to take a step back and go back to your care team and your doctors who you had seen for a couple of years now, right? You know, what did they, what did your doctors or your care team say when they finally found the cancer? Had they ever seen it at such an early stage before?

Robert Higgs (18:53)
Well, I think it was very early obviously because it’s the HPV virus. It’s one of the cancers. I’ve learned all about this obviously since I knew nothing about it. I mean, HPV to me was something that when the kids get vaccinated at school for HPV virus, I’ve never been vaccinated for it. But obviously, lots of people have it and their body can deal with it. With me, obviously, I caught HPV at some stage and my body hasn’t dealt with it so it’s sat. But it can be dormant in your body for 30 years, so they tell me.

It’s just amazing,the timing. And that was what surprised all the, I think the nurses, the consultant and stuff, because they were convinced there was nothing there. Just couldn’t, know, I had ultrasounds, they were measuring neck nodes and all sorts. Everybody has little bumps and neck nodes and stuff like this. There was nothing there. They just kept saying, we can’t see it. But there was always a little bit of cell activity on the MRI scans. And that’s the only thing I think.

That’s the only thing that sort of kept the consultant thinking, well there might be something there. We can’t find it, we can’t see it. It’s that small, but there’s this cell activity going on. So if there’s cell activity, it’s cells dividing, if you know what I mean. So they tell me. So they were quite surprised, I think, all the way through it, because I don’t think they’ve seen it where somebody’s sort of got a cancer signal from a test and they can’t find anything so they’re thinking well you know the test is wrong but then the test was right all along really from, yeah do you know what mean, so when they did find it at the end it was like wow this is quite amazing. Like I said earlier because it’s been there all the way through it we just haven’t been able to see it and it you know and the tests we’ve had haven’t been able to find it or flag it up but it was still there. We know it was there because in the end they did find it.

Rayshawnda Madison (21:05)
They did find it.

Robert Higgs (21:26)
So yeah, they were equally as amazed about the whole situation as me.

Rayshawnda Madison (21:31)
I love that. Is there anything you would say to people who may be scared or reluctant to take a screening test like this?

Robert Higgs (21:36)
Well, to me it’s a no-brainer. If you get offered this test, I wouldn’t hesitate to say to anybody, do it. You’ve just made a very good comment there. You can’t lose, because like your boss said to you, do you know what I mean? It’s good news or it’s good news. It’s either flag something up, and they treat it, or it doesn’t flag anything up. It’s one or the other, but both of those are good scenarios.

Robert Higgs (22:11)
What you don’t want is for it to be there and not picked up and then before you know it, it’s not stage one anymore, and it’s possibly spread to somewhere else, it’s possibly traveled around. That’s when you start having problems. So I’d say to anybody, if you get a chance to have the test, why wouldn’t you have it? It can only be good news really. So, definitely.

Rayshawnda Madison (22:25)
Yeah, I that. I love that. And I really admire your courage to do that like we said, people can certainly feel like it’s final. And you did not. You took that as your sign to say, you know what? I’m going to do what I got to do. I’m going to fight this thing back. It’s not going to beat me.

Robert Higgs (23:49)
Absolutely.

Rayshawnda Madison (23:50)
And you did that. And I’m so proud to be here with you on the other side of that, Robert. Congratulations.

Robert Higgs (23:58)
Thank you.

Rayshawnda Madison (24:00)
I want to hear how your health is now. When you think about, when you hear the word health, what does it mean to you? How are you in health right now?

Robert Higgs (24:08)
Great, I’m back to doing everything I was doing before. I lost quite a bit of weight obviously when I was having the treatment because of the throat, but I was a bit overweight anyway. So I’ve lost my beer belly, that’s gone now, so I’ve lost a bit of the weight I didn’t need. So I’ve trimmed down, yeah. So I’m at a better weight anyway. I feel healthier.

Rayshawnda Madison (24:28)
Yeah. Yeah.

Robert Higgs (24:34)
So, mean, it just makes you think as well about the whole, you almost think I’m very lucky. So it makes me think I wanna stay healthy now, do you know what I mean? So I am eating a bit healthier. I am drinking a little bit less. I am doing a little bit more to look after myself because I think I’m lucky to be here, do you know what I mean? Because ultimately it’s given me a new lease of life really, because I say, not knowing I had cancer, then being told I’ve got cancer, then it’d be treated and it’s gone. I feel as good as new. So my health is good. And probably like I say healthier than I’ve been for a long time, even though that might sound mad after recovering from cancer. But yeah, I feel good. Yeah. So doing sports, […]. I went back to work as soon as I could just because I come, I was bored sitting around the house. Do you know what I mean? So I wanted to get up and do. So as soon as I went back to work, you know, I started putting a bit of weight back on, a bit of muscle back on.

Robert Higgs (25:31)
I’m doing sport again, I’m walking. So yeah, absolutely, really. I’ve got a dry ⁓ throat. That’s the downside of it all. But if that’s all I’ve got to worry about, I’m not worried. So other than that, yeah. Other than that, I’m good. so.

Rayshawnda Madison (25:44)
Incredible. Incredible. That’s great news. I feel so lucky that I got to have this time with you. Thank you so much for joining me today.

Robert Higgs (26:02)
Pleasure.

Rayshawnda Madison (26:03)
And you to all for listening to this episode of the Cancer Signal Podcast. You can always learn more at GRAIL.com and we hope you will join us again next time.

[Voice Over]
Based on a clinical study of people ages 50 to 79 around 1% are expected to receive a cancer signal detected result, which includes predicted cancer signal origins. After diagnostic evaluation, around 40% of people are expected to have a confirmed cancer diagnosis. The Galleri test is prescription only. The Galleri test is recommended for use in adults with an elevated risk for cancer, such as those age 50 or older. It is not recommended for individuals who are pregnant, 21 years or younger, or undergoing active cancer treatment. Galleri should be used in addition to routine cancer screening. Galleri does not detect a signal for all cancers. False positive and false negative results do occur. For more information, including important safety information, please visit galleri.com.

 

The overall sensitivity in study participants with head and neck cancer was 85.7% (63.2% for stage I, 82.4% stage II, 84.2% stage III, 96.0% stage IV).

Important Safety Information
The Galleri test is recommended for use in adults with an elevated risk for cancer, such as those age 50 or older. The test does not detect all cancers and should be used in addition to routine cancer screening tests recommended by a healthcare provider. The Galleri test is intended to detect cancer signals and predict where in the body the cancer signal is located. Use of the test is not recommended in individuals who are pregnant, 21 years old or younger, or undergoing active cancer treatment.

Results should be interpreted by a healthcare provider in the context of medical history, clinical signs, and symptoms. A test result of No Cancer Signal Detected does not rule out cancer. A test result of Cancer Signal Detected requires confirmatory diagnostic evaluation by medically established procedures (e.g., imaging) to confirm cancer.
If cancer is not confirmed with further testing, it could mean that cancer is not present or testing was insufficient to detect cancer, including due to the cancer being located in a different part of the body. False positive (a cancer signal detected when cancer is not present) and false negative (a cancer signal not detected when cancer is present) test results do occur. Rx only.

Laboratory/test information
The GRAIL clinical laboratory is certified under the Clinical Laboratory Improvement Amendments of 1988 (CLIA) and accredited by the College of American Pathologists. The Galleri test was developed — and its performance characteristics were determined — by GRAIL. The Galleri test has not been cleared or approved by the Food and Drug Administration. The GRAIL clinical laboratory is regulated under CLIA to perform high-complexity testing. The Galleri test is intended for clinical purposes.