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Rad Chat is a forward-thinking global knowledge hub where healthcare professionals can advance their knowledge and expertise in radiotherapy and oncology by utilising the award winning, first therapeutic radiographer led oncology podcast and social media channels.
We're empowering healthcare professionals worldwide by providing free, CPD-accredited radiotherapy and oncology education, by sharing real-world experience, expert insights, best practice and patient perspectives, we're helping healthcare professionals’ advance cancer care and improve patient outcomes.
Jo McNamara Rad Chat Host (00:00.962)
So welcome Debra to Rad Chat, we're really happy to welcome you. Can you start by telling us a little bit about yourself please?
Debra Montague (00:09.581)
Thank you very much, Jo. And I'm delighted to be here first. So, yeah, I'm Debra Montague and I'm the founder and chair of Out Positive UK. So I'm also a patient. I was diagnosed just over nine years ago now. Actually, nine years and one month ago. So, yeah, that's who I am now.
Naman Julka-Anderson (00:36.406)
If we take you back, Debra, would you mind just telling us how you were diagnosed?
Debra Montague (00:41.131)
Yeah, so I actually was working in the pharmaceutical industry at the time and I was in an open plan office and I developed an annoying cough. It was more annoying to my colleagues than it was to me and I eventually went to the GP because they were leaving cough sweets on my desk whenever I left my desk to go to a meeting and come back.
took off sweet and I thought, I need to do something. So went to my GP, I never smoked, was relatively fit. So her and I both agreed. I couldn't have lung cancer. So it was obviously reassuring. I assumed it was adult onset asthma. Being in the pharmaceutical industry, you do tend to self-diagnose yourself. And I'm sure a lot of medics do as well.
She said, Oh, I'm not sure. It doesn't sound like it. So let's send you off for a chest X-ray and blood test. So went off and did that. That came back unremarkable. Was the summary by my GP. I had private health cover at the time, so I was very lucky. So we said, well, let's go straight to, you know,
respiratory consultant and see what they say. So they ordered another x-ray and blood test and that came back exactly the same. And then he said, well, my cough had got slightly worse at that stage, but not really that I wasn't able to work or anything. So he said, I'll order a CT scan and see if we can find out anything else. I said, okay. And I went back on the evening of...
of the 6th of October in 2016. yeah, so he, he said, well, I've got your CT scan results. I said, oh, great. And he said, yeah, he said, you, you've either got an autoimmune disease or it's looks like it might be a secondary lung cancer. So of course I, word cancer and no one wants that. So thought, oh, let's go for the autoimmune disease. That sounds far less serious. So,
Debra Montague (03:06.239)
not knowing that actually autoimmune diseases can be incredibly serious in themselves. There's ignorance for you. And so I said, well, what type of autoimmune disease, you know, could it be? And he said, well, I wouldn't want to give you false hope. So I thought, well, that is not, is it? So I said, well, let's look. So we're looking at secondary lung cancer. So he said, we need to do another CT scan of your whole body to see where we if we can find the primary. So I went.
home that night and googled secondary lung cancers trying to work out which one I wanted to be my primary, you know, which had the best outcomes. Not that I was going to get to choose, but you do those sorts of things when strange things happen to you. So that was kind of how I got diagnosed and then further another PET scan and then the announcement that I actually had stage four.
lung cancer and they were waiting for some test results in order to tell me exactly what cancer it was. So I wasn't going to start treatment. They were going to leave me for and it took three weeks to get the results through and I have to say the longest three weeks of my life. Yeah, and there are some learns for the healthcare professionals.
because people are still waiting for that ultimate diagnosis of a mutation-driven lung cancer and you feel as if you've dropped through the cracks. So I was making the right nuisance of myself. I was ringing up all the time saying, are the results in? Are the results in? Because I just didn't know that...
they hadn't got lost or the paperwork was sitting somewhere. You hear these stories and you never know. And at that point I'm thinking, being diagnosed stage four, I thought my life depended on it. So yeah, think a lot more hospitals need a checking system so that the nurse rings and says, we haven't forgotten you, we are still waiting because some of these results are still taking many weeks to come through.
Jo McNamara Rad Chat Host (05:27.744)
Thank for sharing your experience Debra and that sounds just mind blowing just what you had to contend with during those three weeks having already kind of been around the houses in terms of trying to find a diagnosis. What treatment did you end up having when that diagnosis has actually been confirmed?
Debra Montague (05:50.219)
very lucky because one of the first targeted treatments had been given nice approval just six weeks before my diagnosis and in fact while we were waiting for the results I was told if I didn't have the right, the description to me was if you either have the good gene or the bad gene and to this day I still don't understand what he was trying to say and what that means with all my understanding I still...
I'd love to go back and say, what exactly did you mean by that? Anyway, so I thought, well, okay, maybe I'm going to go on chemo, in which case I bought a diary and I mapped it out every three weeks as to which third week I would be socializing and the like. But whereas the first week I'd be kind of on the setty, good for nothing sort of thing.
But yeah, so when the results came through and they said, we're going to put you on a targeted therapy, which will be a tablet. Yeah, it was incredible, really, the relief being told that you can kind of get on with normal life.
Naman Julka-Anderson (07:05.152)
It's very different to the normal conception or whatever of what a cancer patient has, isn't it? So chemotherapy, being bald, surgery or radiotherapy, etc.
Naman Julka-Anderson (07:19.958)
And just thinking about obviously how much has changed since your diagnosis, what have you seen with other people, maybe in the community and things like that?
Debra Montague (07:31.001)
The landscape has changed massively in the nine years I've been diagnosed. I I was put on one of the first targeted therapies and it's not prescribed anymore because it's been superseded by three others and in fact, no four now. So it's incredible. So for me, of the consequences of that is we need to stop telling patients prognosis because actually we don't know.
We never knew anyway. Nobody knows how long someone's going to live, plus any of us on the planet. But it can be quite frustrating because people come away when they're first diagnosed, they're in a bad place and then someone says, oh, if you're lucky, you might have this. And then everybody works to this timeframe. And actually, at the moment, all bets are off. We don't know.
you know, some of the newer treatments, people are on them for eight years. Well, I mean, I was given a diagnosis if you're lucky, and this was with the targeted therapy, I might make three years. Well, they got that one wrong. Now, not everybody is the same. And we don't know why some people react well to the targeted treatments and some people don't. So there is.
still an average life expectancy in the UK of maybe five, six years, but that's improving all the time with the new treatments. And now you've got add-ons to the targeted therapies with the ADCs and the, you know, the bi-specific antigens. you know, when we've got this, there's so much going on in the world of research.
We just don't know what it's going to look like in three years or even five years time. So for me, I think there's a lot more hope. I still get slightly frustrated when people say, yes, we need to treat it like diabetes. It's a chronic condition. isn't. Too many people still die from stage four lung cancer. However, we're making great strides and we've
Debra Montague (09:54.137)
within the, within Out Positive UK, you know, we've got members who are 11, 12, 13 years plus. So, yeah, I just think anything's possible. And we just need to live as well as we can and still avoid those number 72 buses that everyone needs to avoid. So.
Jo McNamara Rad Chat Host (10:18.766)
That's amazing that is. So Debra in terms of the charity what prompted you to set ALK up? You know where did it all come from?
Debra Montague (10:27.854)
Hmm.
Debra Montague (10:34.443)
It's all by accident. If I knew then, well, I knew now. What happened was I joined an American group and online, Facebook group. there were a couple of UK people there. But I was seeing and hearing that a lot of the Americans were meeting up on a regular basis. They were going to different congresses and things like that. And I thought, it'd be nice to meet another Alc person. So.
I put a call out and this is where my pharmaceutical training and background came into the fore really. So I put a call out and said, look, to any of the UK people on here, and I think there were 54 in total, anyone fancy meeting up? We're going to have to pay for our own lunches, but you know, if you want. And one other person on the page came piped up and said, my husband's the patient, but doesn't engage, but I do.
I work for a hotel at the airport. I might be able to get a discounted rate. And I thought, well, fantastic. So yeah, so we arranged to meet and then I was under the care of Professor Poppat that time. And I said, oh, you know, is there any way you could come and just give us a bit of a chat? You know, just only a couple of words of encouragement.
Nothing more than that. Because I thought, I know he's London based, so therefore it shouldn't be too far to travel because his hotel was just outside, I think it was Heathrow. And he said, oh, I can't. He said, I'm busy. He said, I've got a family engagement. I said, OK, that's fine. I appreciate that. And he gave me the contact details of somebody else. And I did email that person three times, and they never got back to me. So I thought,
Okay, I can't do four times because that's really stalking you by now. So and you clearly don't want to reply to me. So I'll leave you alone now. And I happened to pass Professor Popper in the corridor one day when I was at the hospital, were in blends or something. And he said, did you speak to that person? I said, no, unfortunately, they, you know, I didn't get an answer. He said, go on, I'll come along for a couple of minutes. I said, that'd be fantastic. Can't thank you enough.
Debra Montague (12:58.475)
And I'd also arranged for Macmillan to come along. So at the time, one of my very, very good friends, her sister was the chief exec at Macmillan. So I pulled a few favours and said, look, is there any way someone could come along and just talk us through, you know, how Macmillan can help us sort of thing. we had two speakers, if you like, lined up for our meeting.
as well as lunch. So Professor Poppock turned up and he was only going to do five minutes because as he said, he had this family engagement and I had to kick him off after an hour and half. I'm like, you've got a family thing to go to. Go! And this poor lady from Macmillan is stood at the back of the room with the patience of a saint.
So I couldn't apologize enough to this poor woman. She'd given up a Saturday for the, you know, for not just volunteered it and the poor woman sat there. So she eventually got the chance to share with us. And, one of the things he said was he said, oh, we need more patient advocates in, you know, in the UK and whatever. And so I said to the group, I said, oh, should we have our own Facebook group? Because a lot of the things that were being said in America didn't apply to the UK.
quite different and I found myself very often going on say you know when someone asked a question from the UK someone from somewhere else in the world would answer and I'd end up coming on said no computer says no we can't do that in the UK we've got nice we've got this and whatever you know and so they all said yeah that'd be great so we set the Facebook group up and that's what it was going to be a Facebook group and we then
decided to go and try and find some more people. So my father lent us a thousand pounds to go and get some leaflets printed. And again, I pulled in a favor from someone I'd worked with when I was in pharma. So from a lady called Sally from Creative Planet. I'm going to put a shout out there to her because she'd worked for Out Positive UK for three years for nothing. She did all the...
Debra Montague (15:14.137)
the creative stuff and produce stuff for us. Print, but we only, needed to pay for printing. yeah, so we, each of us had a bundle of leaflets and when we went to our hospital, we would leave them there and encourage the nurses to give them out. And slowly the group built up, you know, and then a couple of nurses, you know, would say, would tell people that this group, you know, were in existence.
And we decided to do the nurse conference, the LCN UK conference. And it was fantastic opportunity for us. We met so many nurses, but we by the end of the... So we set up the Facebook group in the June and by December, we registered as a charity. Cause I, with my pharma background, I knew we'd have more opportunity to be able to engage with pharma in a meaningful way.
to support the organisation and what we needed. And then we did some surveys and we were hearing stories of how different people were being managed across the UK and it became evident that there are vast discrepancies between how patients are managed. And so we started developing resources and the numbers grew and yeah, so that's so.
We did that. Then we had meetings on a regular basis around the country, North and South, where we'd get a speaker in, two speakers, and have lunch, get together. By then we were calling ourselves Alkes. And we were doing that on a regular basis. Then we got COVID.
So we were in lockdown, so we decided to do it online. So we had a number of Ask the Expert sessions, Professor Popout was one, we had Dr. Bajal was another. He's been a phenomenal support to the organization really. And we came out of lockdown and I just had this silly idea that we should have a patient conference instead of just these by
Debra Montague (17:38.265)
these events up and down the country. So, so we actually went to Pharma for funding because we couldn't have done it otherwise. And we had our first conference there. We had 85 delegates turn up. We had volunteer speakers from all the ALC experts across the UK, which was phenomenal. They all gave up their time and traveled. The first one was in Birmingham.
and then we took it to London the following year and next year will be our fifth year and we had nearly 200 people in the room this year on the Saturday but it's all down to the speakers, know, Professor Popak still supports us on a Friday evening.
Dr. Bajal, he's phenomenal. He does an open mic Q &A on the Sunday and was the only one that was prepared to volunteer for that session where he isn't primed with the questions. The audience can ask him anything and he's brilliant and he does that and it goes down really well. But we have all the other experts from across the country. Professor Greystoke from Newcastle flies down and as I said, he does a brilliant
debate with Dr Tom Nusant Davis. They're very, very funny as well as being incredibly informative at the same time. so yes, our members love it. So we got to keep going. So that it never, there was never a plan. No, did I sit down and plan out what was going to happen with, with, with without Positive UK? Absolutely not. No, no, it was going to be a Facebook group.
Naman Julka-Anderson (19:18.136)
Yeah, it sounds amazing.
Naman Julka-Anderson (19:32.792)
Definitely much more than a Facebook group now. We did see that on your kind of your strategic choices around direction that it's more about support, empowerment, advocacy rather than fundraising for research. Do you mind just talking us through that decision?
Debra Montague (19:35.565)
Yeah.
Debra Montague (19:45.131)
Yeah, so we felt that there were organisations that were fundraising for cancer research and you you need so much money to do research. I mean, you know, you are talking a lot of money and the US group of ALC, they call themselves ALC Inc now, I think.
I mean, they have done a phenomenal job of raising funds. mean, millions and had lit tens of millions. And so, but the psyche of the British population is different to the psyche of Americans. And we felt that there was a gap in support for patients. What you've got to remember is this, know, what we're talking about is a population who are generally younger.
The vast majority never smoked. They're healthy, they work, young families, two thirds of female, under 50. That means you've got young children, you know. And to get a stage four lung cancer diagnosis, it's devastating. mean, to some people it takes them years to get their head round. And I just felt there was a lack of support for that.
targeted population if you like and there's nothing there's no substitute for talking to somebody who's in your shoes they get it you know you can have a bad day even though there aren't any triggers you can you just do the side effects affect people in different you know in different ways and when you first start that
Debra Montague (21:41.539)
targeted treatments. I I know I make lighter than say we just take some tablets, but they do come with significant side effects and for some people quite debilitating. And but being able to come on to the Facebook group and say, you know, I've just turned purple. God, you know, should I have turned purple? And, know, when everybody piling, yes, it's Thursday. Yeah, it's perfectly normal to turn purple on a Thursday. Now, if you turn purple on a
Wednesday or Friday, no, ring your oncology nurse immediately. know, so it's reassuring that it's normal that something's happened to you. We always encourage patients, even if it's an expected and a well-recognised side effect, we always say to people, you still need to report that the next time you go to your oncology appointment. What it saves
is the unnecessary phone calls when actually it is a recognised side effect and you know it's it would be okay to wait a week or so and to report it when you're at the next normal hospital appointment. but yeah it's very it can be very reassuring for people to to and to know that they're not the only one because in their hospital sat in you know an outpatient department.
Jo McNamara Rad Chat Host (00:01.026)
Definitely Debra that element of peer support I can imagine is just so important. So as we move towards the end of the podcast recording, although I think for any of our listeners, we just want to talk to you all day really. Your story is really inspiring and just makes us want to chat more. for any listeners out there, what top tips would you want to give them to any patients, any healthcare professionals? What lasting message do you want to leave them?
Debra Montague (00:31.666)
Even if you're not ALK positive, whatever diagnosis you've got, I would encourage you to sign up with a bonafide support organization. Even if you've been given a state four diagnosis and you imagine the whole conversation is around death and whatever, it's absolutely not. And for healthcare professionals,
My plea would be for you to understand the value of patients getting that emotional support. You provide the clinical expertise and keep patients alive. Nurses do a similar job and provide a level of support. But there's nothing like being amongst people with your condition.
that we can all work together. We would never dream of giving any advice to patients. We always send them back to their oncology teams. But we can be there to hold their hand. And when they're having a rubbish day, I encourage them to get on the duvet with a large bar of chocolate, a big tub of ice cream, and watch Netflix with a large box of tissues because...
and feel sorry for themselves because why not? They haven't done anything to deserve this. Life can be unfair and it can be hard trying to stay positive for your family and friends at times. And so being able to come on into the group and have a moan and no one will think badly of you, they get it.
and there's always someone there to lift you up. Yeah, I think that's how you get through this with the support of your family and friends, yes, but also though that may be more hidden element of your, people call it the second family, the one that they can moan to. So, and that is incredibly valuable.
Jo McNamara Rad Chat Host (02:50.378)
Debra, thank you so much for coming on Rad Chat. You've been absolutely amazing and we wish the charity all of the success and we'll share in the show notes all of the links to the work that you do. So thank you very much for coming on Rad Chat.
Debra Montague (03:02.378)
No, thank you very much indeed for the invitation. Thank you.
Naman Julka-Anderson (03:07.556)
Thanks, Debra.