Naman Julka-Anderson (00:00)
Hello everyone and welcome to Rad Chat, founded by me, Naman Julka- Anderson.

Jo McNamara Rad Chat Host (00:04)
and me, Jo McNamara. So Rad Chat is a forward thinking global knowledge hub where healthcare professionals can advance their expertise in radiotherapy and oncology. Unlike traditional academic resources, we blend real world experience, expert insights, best practice, and of course, most importantly, patient perspectives.

Naman Julka-Anderson (00:23)
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Jo McNamara Rad Chat Host (00:39)
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Naman Julka-Anderson (00:47)
So this is episode four of our anal cancer series. So this series has been supported by an unrestricted grant from Incyte Biosciences. Incyte had no involvement in the development, content or editorial review of the activities associated with this initiative. So today we'll be hearing from our guest, Professor David Sebag-Montefiore about anal cancer treatment, clinical trials and International Multidisciplinary Anal Cancer Conference or IMACC. Hi David, how are you?

David Sebag-Montefiore (01:13)
Hi Naman, I'm very well thank you and thank you very much for the opportunity to do this podcast.

Naman Julka-Anderson (01:18)
Great to be here, you're such a legend in the game. I think we're both very privileged to have you on for your first ever podcast in history, so that's nice.

David Sebag-Montefiore (01:25)
Making my debut.

Naman Julka-Anderson (01:26)
Thank you. For anyone who doesn't know you, please could you just give us a bit of an overview of who you are and what you've been up to.

David Sebag-Montefiore (01:31)
So yes, my name is David Sebag-Montefiore, I'm a professor of clinical oncology. I'm based at the University of Leeds. I've worked in Leeds for just around 30 years now. I qualified at St. Bartholomew's Hospital in London. I did my training in London before moving to Yorkshire. My main interests are really a combination of clinical trials research, radiotherapy

and particularly when it's applied to anal and rectal cancer. So for today, it's really about some of the exciting developments that have taken place in anal cancer, which is a disease that radiotherapy has used a great deal in its treatment.

Jo McNamara (02:09)
David, can I ask why specifically anal cancer and rectal cancer? What was it that kind of drew you to that site specific area?

David Sebag-Montefiore (02:16)
That's a really good question. So when I was training, I think the most influential time of my training when I was a more senior registrar and I worked with a consultant, Sydney Arnot, and he was particularly interested in anal and rectal cancer. And he'd been involved in the development of the first ever randomised clinical trial in anal cancer. And whilst working for him.

I saw some of the really amazing things that were taking place and the changes that were taking place. And so I particularly was, I suppose guided by mentors and also my own clinical experience of thinking this is an interesting area. And actually it was one that not many people were working in. So I think that sort of made me think, well, maybe there's opportunities to do things here that

and it's not too competitive a space, so that might allow me to actually develop my own research.

Naman Julka-Anderson (03:08)
How different is this treatment space compared to then, like to now?

David Sebag-Montefiore (03:12)
It's completely different. There has been a real transformation in the management of anal cancer from the time I've just been talking about through to today. So historically, at the time I was sort of getting into this area of my research, the standard treatment was a major operation to remove the cancer. And that required a permanent

stoma or colostomy bag. So it was a very, very big undertaking, sometimes for really quite small tumours. So patients had to undergo major surgery and live the rest of their lives with a stoma. So the clinical trial that I saw and I was involved in recruiting to when I started was actually comparing the use of radiotherapy with a combination of radiotherapy with chemotherapy being given

during the time of the radiotherapy treatment. So it didn't go on for very long, but the question the trial was testing was whether adding chemotherapy during radiation treatment could get a better outcome than using radiotherapy alone. And to cut a long story short, it did exactly that. And it really showed really quite good outcomes in terms of eradicating the cancer. And in parallel with that, there were two other randomised trials.

One going on in mainland Europe under the auspices of the European Organisation for the Treatment of Cancer or EORTC for short, and a third trial going on in the United States. And they all came to the same conclusion. So one of the things we're very proud of in this area of research is despite its rarity and the difficulty that is perceived about doing randomised trials, we have been able to do it.

And those three trials produced results that actually changed practice globally. So patients started to be treated using a combination of radiotherapy and chemotherapy. And that meant that if that treatment was successful, patients avoided the need for a major operation and they avoided a need for a permanent colostomy. So that was a very major step change, but that was over 35 years ago.

And then since that time, we've had mixed success, if I'm honest. Some of the trials that then took place, and there were three randomised trials that followed, and they wanted to improve anal cancer outcomes by adding chemotherapy either before or after the chemo radiotherapy treatment. Now those trials were successfully conducted.

And during those trials, and within them, I should say, we were able to improve the radiotherapy technique to a degree to reduce some of the side effects. But unfortunately, those trials, which took around seven years to recruit, ultimately did not improve anal cancer outcomes. However, the introduction of improved radiotherapy did reduce side effects for patients. So the standard of care didn't change

although some of the improvements in radiotherapy did.

And then following that, there has been a revolution in the technology and the hardware, software and engineering components of radiotherapy treatment, which means that we can be giving much more sophisticated radiotherapy than we were able to do in those trials.

So by that I mean, we developed an approach where the radiotherapy beam could be much more precisely shaped and we could deliver it with much greater accuracy by changing the intensity of the beam. So if you think of a spotlight, but rather than having one spotlight, you have multiple beams all actually on at the same time and some might be brighter and some might be less brighter

whilst you are actually giving the treatment. And we were doing that for multiple directions when we were treating a patient each day with treatment. And that approach is known as intensity modulated radiotherapy, IMRT for short. And that was a step change in avoiding a lot of the normal tissue irradiation, which meant that we could significantly reduce the side effects.

So that was a very major step forward. But despite that, we still have a remaining problem at this stage where actually a significant number of patients will have both short-term and long-term side effects of treatment. So at the end of that period of time, we had improved radiotherapy techniques, we had replaced the need for surgery, we reduced side effects

but we still had some way to go.

Jo McNamara (07:36)
David, for anyone listening, what side effects do patients experience from radiotherapy or chemo radiotherapy?

David Sebag-Montefiore (07:43)
Yeah, thanks Jo. think ⁓ it's important to try and give a picture of that. So these treatments by standard treatment are given over five and a half weeks. So patients travel daily as an outpatient. The treatment is short, it's only a few minutes. But during those five and a half weeks, the side effects will build up usually around the fourth week reaching a peak around the fifth week or the first couple of weeks after treatment

and then take at least four or five weeks to subside. And those side effects will include general side effects like tiredness and fatigue, which build up during the treatment. It will include side effects relating to the bowel. So it can include diarrhoea. And because the actual tumour is very close to the lower end of the bowel and it gets irritated by the radiotherapy,

then actually it can interfere with bowel function with a feeling as if patients need to go to the toilet to open their bowels when they don't. So that feeling can be quite unpleasant. And in addition to that, there can be an increase in the frequency of passing urine. But perhaps the most severe side effect is actually the skin around the anus itself gets very sore

but this because despite our targeting approach, the tumor is very close to the skin surface. So one of the more severe side effects is actually the skin around the anus gets very sore and therefore walking, sitting can actually be affected. So it can have a really significant impact on patients. Having said that, fortunately these side effects tend to really settle within a few weeks of completion of treatment.

In the longer term, however, there are side effects and those bowel function side effects can remain in some patients. And radiotherapy can also have an impact on sexual function for both men and women. And that can be obviously a very significant issue.

Naman Julka-Anderson (09:34)
Are those sex and intimacy side effects discussed enough, do you think, for our patients?

David Sebag-Montefiore (09:40)
In a word, no. I think it's something that both patients and to some degree healthcare professionals are sometimes embarrassed to talk about and therefore may not routinely bring it up in consultation. I think also there is some progress in actually approaches or interventions that can help address these side effects, but perhaps not as well as we would ideally like.

So maybe healthcare professionals feel concerned that they can't do too much to help, but there are things that they can do and there's some really important things that should be done. But also I think in clinic, I think whether it's a nurse specialist or whether it's a medic or whether it's a radiographer, asking patients about side effects and particularly exploring whether they have any intimacy or sexual

function side effects needs to open up that conversation because it won't naturally open up on its own.

Jo McNamara (10:34)
David, when you talk about kind of things that potentially healthcare professionals can engage patients with around maybe prehabilitation, rehabilitation, what kinds of things specifically are you talking about?

David Sebag-Montefiore (10:47)
So if you focus particularly on sexual function, so in male patients, and this is not necessarily as widely appreciated as it might be, the dose of radiation that's received by the testicles, which is not within the actual target area, is still a sufficient dose that it can sometimes cause a drop in the level of testosterone. So measuring testosterone levels,

and if those are low, providing testosterone replacement therapy could make a big difference for an individual patient who say has become impotent or has partial impotence as a consequence of the radiotherapy. And in women, I think it's very important that discussions take place about the use of vaginal dilators and where appropriate, hormone replacement therapy.

So in premenopausal women, they will undergo a premature menopause as a consequence of radiotherapy. And therefore discussing the option of hormone replacement therapy, so actually to overcome those issues is a really important discussion. And then in terms of the physical impact, the radiotherapy can tend to cause a risk of vaginal narrowing or vaginal stenosis.

And that obviously will have significant impact on sex and intimacy. Also the ability to conduct cervical smears and screening approaches for other cancers where people with this type of cancer are at risk of it coming up in other areas relating to the HPV virus. So commonly, vaginal dilators should and are considered post-treatment.

And that's something that needs to be handled sensitively. And there is probably, it's fair to say, an under-provision of what we call late effects or long-term side effect clinics where actually we have healthcare professionals who are experienced in doing that. But we routinely do this in Leeds. This is something that's part of our routine practice and all patients, all female patients will have that discussion

around the time of the end of their treatment and during follow-up to actually support those patients in the best way that we can. But actually prevention of vaginal stenosis is far better than the management of vaginal stenosis that is much more problematic to treat.

Naman Julka-Anderson (13:00)
David, with that, people who enjoy anal sex or want to go back to have practising anal sex, is there anything around anal dilation or how they can manage that?

David Sebag-Montefiore (13:10)
So that's a really good question. And I think the answer is probably yes. But I think it's very under-researched and it's very rarely discussed. But I think my own natural view on that is yes, because there are many ⁓ anal conditions where a riscus stenosis or anal fissures are routinely managed by anal dilation. So I think the same principles apply.

Jo McNamara (13:40)
From your experience, how do patients come through a diagnostic pathway typically for anal cancer and have you yourself seen that stigma that sometimes is associated with anal cancer?

David Sebag-Montefiore (13:51)
So let me take the stigma bit first. I think there is a clear stigma. And I think one of the key messages for me is we need to talk about anal cancer and not be embarrassed by the position in the body that we're talking about. If it's a little bit higher up, it's in the rectum, it's bowel cancer, and people feel much more comfortable talking about bowel cancer. And sometimes bowel cancer is right down at the bottom end, not very different from where we have anal cancer.

I think there's a public message that we really want to get out there, which is people shouldn't feel embarrassed going to talk to a healthcare professional or a GP. They've got symptoms there that they're worried about. They should go to their doctor. This is a very treatable cancer. And if we diagnose it early, there's a very high chance of cure. So early diagnosis is really important and trying to overcome that stigma for us

as a group of healthcare professionals treating the disease and all people involved really want to try and get that message out. It's quite difficult because the media channels to do that are limited and that's why I'm delighted to do this podcast today. And I think we do need to find ways of actually getting wider coverage to spread that very important message.

Naman Julka-Anderson (15:03)
The thing that's difficult

though isn't it is the word anal. It gets censored. And obviously we're not censoring it and we're saying anal quite a lot and it's probably going to make some people feel uncomfortable because it's not something you talk about. But even when we've posted about anal cancer or even about IMACC which we'll talk about a bit later, you can see the metrics on social media. It's so much lower than any of the other posts because it gets censored.

David Sebag-Montefiore (15:06)
It is. Yes.

Yes,

yes indeed, indeed. And the other part of your question, Jo, was around, you know, how do people present? It varies. I mean, if there is a lump, if there's a sensation of a lump at the lowest end of the bowel, patients should get advice from their GP. Now that lump could be a haemorrhoid and not a cancer, but it needs to be assessed to actually provide reassurance to people where it is a haemorrhoid

and to actually get investigated if there's a question of it's something that might turn out to be either a pre-invasive cancer, something that's not quite become cancer, or an early cancer. But in addition to that, alteration in the actual shape and consistency of the bowel motion can be a factor. Bleeding can be a factor.

And that can cause anaemia. So one of the patients that took part in one of our trials, she went to the doctor because she's short of breath because she was anaemic. But the reason she was anaemic was because she had anal bleeding and she thought the bleeding was due to a haemorrhoid. But she knew she had a haemorrhoid. So I think the simple answer is there isn't one symptom, but it's a sort of symptoms you might imagine that could take place around the very low end of the bowel.

And I think given the early diagnosis angle being extremely important, people should not feel worried about seeking medical advice to actually, you know, get a steer as to whether it needs to be looked into or not. And a lot of the time it doesn't. Hemorrhoids are very common problem. Rectal and anal bleeding is a very common problem. But we can't expect people to actually work that out on their own. And we want to encourage them to seek help to actually

decide on that.

Jo McNamara (17:00)
I'd imagine that's one of the challenges for our primary care practitioners, isn't it? Where essentially, you you fill out your online form saying I'm having some anal bleeding, it could be a haemorrhoid and that's kind of their first thought, ⁓ go to your chemist, go and get some topical products. So ⁓ I can absolutely see how it can be really challenging, both for a patient, but also for GPs trying to manage the sheer number. And I would also imagine with people's diets changing over

David Sebag-Montefiore (17:16)
Yes. Yeah. Yeah.

Jo McNamara (17:29)
the years as well. there is an increase in, I haven't got any statistics, but increase in the number of people that experience hemorrhoids with bleeding that then contribute to that problem as well.

David Sebag-Montefiore (17:38)
Yes,

it's a very common condition, yeah.

Naman Julka-Anderson (17:41)
I'm just trying to think of maybe some, you know, men who have sex with men that if they are partaking in anything vigorous as well that's something that I've heard Stuart from Outpatients charity ⁓ talk about that some of the stigma around anal cancer is, yeah, men who have sex with men when they speak to their GP that's often some of them have been fobbed off because of that, that it's because you're having sex it's not because of anything else.

David Sebag-Montefiore (18:01)
Indeed.

Yes, I mean, I think that is likely to be a significant issue. I think what we shouldn't lose sight of is actually

people deserve to actually have their symptoms assessed on the basis of what they have. I think the presence or sensation of a lump rather than bleeding is one of the messages that actually that's something that needs to be taken a bit more seriously. Not that rectal bleeding shouldn't, but actually a lot of anorectal bleeding that is not a concern does tend to go away, tends to get better. And if there's a cancer present

that's likely to continue.

Jo McNamara (18:43)
So what can we anticipate in the next kind of iteration of future development around anal cancer treatment? David, have you got any sexy trials going on that we can anticipate hitting the scene soon?

David Sebag-Montefiore (18:55)
So now you're hitting something that's very close to my heart, which is around a set of clinical trials that we've been doing to try and improve outcomes for anal cancer patients about nearly 10 years ago now, I set out with a group of colleagues to design a series of clinical trials that would actually try and determine what the best dose of radiotherapy would be for patients who had localised anal cancer.

So the vast majority of people when they present do not have evidence of spread. So this is the vast majority of people that we see in the clinic. But in that situation, we've got people who will have the really smallest tumor just very close to the anus, which could be removed surgically without a major operation and without a stoma. And we felt in that group of patients, we didn't want to give over treatment because some of those patients were getting a local excision

and then having chemotherapy and radiotherapy afterwards. And we felt that the majority could probably avoid the need for any radiotherapy if they had a good local excision. So that's one group that we were interested in improving the situation by actually avoiding radiotherapy where possible. Then we had another group of patients where the tumours were up to four centimeters in size, mainly inside the lower part of the bowel. And we

had good reason scientifically to believe that giving a lower dose of radiotherapy might be as effective as giving the standard dose of radiotherapy.

And then we had a group of patients who have more advanced tumours where we give a standard dose of five and a half weeks. But with the new technology, we could still give a higher dose directly to the tumour beyond the standard dose. So we wanted to test two or higher doses of radiation to see if we could increase the chances of the more advanced tumours that don't respond as well to treatment currently to see if higher doses could eradicate more anal cancers.

So those were three scientific questions we wanted to address. So we came up with three trials and we called them imaginatively because anal cancer treat, kind, in the cancer, start again. And imaginatively that meant we needed three clinical trials and we called them anal cancer trial three or act three, act four and act five. And one of the things that we designed, which I think is

a very positive development and this has been used in other disease areas as well. It's not unique to anal cancer. But we we called the whole program PLATO, which was personalizing the dose of radiotherapy for anal cancer patients. And within PLATO, we had three clinical trials. And because we had those three trials all wanting to be done at the same time, we actually had a single protocol

a single ethics committee approval. And it meant that anyone presenting with an anal cancer could be considered for Act 3, Act 4 or Act 5, according to the size of their tumour. So we avoided some of the common problems with clinical trials, where when patients come to see a doctor with a diagnosis, there is a trial, but they're not eligible for it because their tumour is too small or their tumour is too big. So we set out that plan.

And all three of those trials have been successfully conducted and that's across the UK. So over 40 sites within the UK participated in these trials. It was led by myself and a team across the country. We had six leaders, a pair of leaders for each of those three trials.

And I'd like to say that trial platform has recruited 709 patients. So we hit all of our targets and we're now in a position where we're starting to see the results. So the two sets of results to share today that we have presented around May of last year and in September of last year, which is the Act 4 trial. And that Act 4 trial was designed to lower the dose of radiation

and the aim was to maintain the high cure rate and reduce the side effects and improve quality of life. So we randomised 163 patients into the trial and I'm delighted to say those trial results demonstrate that a lower shorter course of radiotherapy results in the same high cure rate, a 10% absolute reduction in the acute side effects of treatment

and an improvement in quality of life, which includes sexual function. So we're very pleased that these results will allow us to change practice across the globe. This will be the new standard of care for patients with early stage anal cancer. And it means that they could have this successful treatment in four and a half weeks rather than five and a half weeks. So in technical terms, the radiation dose is measured in gray

we're reducing it from 50.4 gray to 41.4 gray. So I think that's a huge benefit for patients. It's a big benefit for their family and their carers, but it's also a benefit to healthcare systems because we don't need to treat patients for the same length of time. We can reduce that significantly. So I think that's a really exciting finding. Finally, the Act V trial.

We've just presented the early results at ASCOGI, the Gastrointestinal Cancer Symposium in January. And those results are important and interesting because they show that about two thirds of the patients we treat obtain a complete response and disappearance of their cancer. However, at this point, the higher doses, we tested two higher doses of radiation, are not demonstrating a higher complete response rate

than the standard treatment. So I think that's indicating there is still some work for us to do to work out how we can improve the actual ability to eradicate the much more advanced local cancers.

⁓

So one of the great strengths of anal cancer research, which the UK, I think we can say quite confidently, the UK is world leading in its anal cancer research and we have delivered the largest anal cancer randomised trials, both from the original trials that I talked about through to now. And clinical trials for the United States have also made a big difference, but we have recruited the largest numbers.

And this finding about the lower dose is the first time. And it's the first time we've changed practice in anal cancer for 25 years. So it's taken us a bit longer than we would have wanted. Whilst we're very good at clinical trials, I think one of the things about them is they are testing clinical questions. And if that result is very positive, that can be fantastic. But as illustrated by Act 5,

it is actually telling us something quite important, which is actually just altering the radiotherapy dose is not going to be the key transforming factor for more locally advanced anal cancer. And one of the things that actually is an issue that we are addressing in Leeds and in other centers across the world, but not in nearly enough detail and with not nearly as enough funding as we would like.

By that I mean, ⁓ we need to do more research into understanding the biological behaviour of anal cancer as to what factors contribute to how well tumours respond to radiotherapy. So if I took two patients at random with the same tumour size and actually of the same gender and with the same degree of lymph node involvement and if we gave them exactly the same treatment,

from the start, I could not tell you which of those or whether both of them would have successful or treatment or not. So we're lacking the biological factors that would predict as to why some patients will really respond the best. And if we understand those mechanisms, that will allow us to develop new treatments. So the urgent priority is a greater expansion of

biological understanding of how tumours respond to radiotherapy, and also the influence the human papilloma virus plays in that mechanism of response and resistance. So I work very closely with a professor of tumor virology in Leeds called Andrew McDonald, and that's his particular area of research interest. And Andrew's working very much on that space, and we are planning to do future research where we combine

the very valuable pretreatment biopsies that we have from patients who've provided their consent in the PLATO trial to actually examine them in the lab as part of research that Andrew is planning to do to really unravel the wiring of actually explaining how tumours respond and how tumours don't respond. And that I think will be key to making a transformational step change in saying

If we're going to use immunotherapy, which patient should we actually test immunotherapy in? If we're going to alter the radiotherapy, what signals do we know about the radiotherapy responsiveness? If there's going to be an intervention due to the mechanisms of HPV, what are they and how they can be translated into the patient? So I think that's the next decade of transformational research on the horizon.

There's one other factor, which is very, very recent news, which I think is a very positive signal. And that was the announcement on World Cancer Day this week that we have a national cancer plan for England. And that's actually setting out a clear roadmap to actually achieve a cure rate for three out of four patients by 2035. But relevant specifically to our conversation today,

is that it set out a strategic priority for rare cancers. And that is incredibly welcome because research in rare cancers is under prioritised and underfunded. So to make progress in anal cancer and that research, I think the recommendations for the government on a 10 year long-term plan is really quite exciting and will allow us to expand the breadth and depth of research that we're doing in that space.

Jo McNamara (28:23)
It's so interesting and David, I think the whole community is so lucky to have you and the team doing this impressive research. One thing I would say is when I've heard you present in the past, the methodologies that you use in enabling a set of trials that complement each other has revolutionised how many patients you're able to recruit to these trials. And it's got to be something that other people in different site specific areas go, why don't we

that because there are so many areas of research and I've seen it firsthand where patients are scrabbling to find research trials to be involved in but eligibility criteria for obvious reasons are very strict but working complementary with other researchers in that field must be of benefit. It was just something that sparked sheer pleasure when I was hearing you talk going

David Sebag-Montefiore (28:53)
Absolutely

Jo McNamara (29:20)
Why don't we do this all the time for everything?

David Sebag-Montefiore (29:23)
Well, it's very kind of you say so. I think it's really important at this point that, you know, this is, I'm only playing a role in this. This is a real team science approach. This would never happen without all the people that I work with. And we have a really big team and all of those members of the team contribute to making this happen. So that includes clinicians who actually work in different hospitals across the country. It particularly involves our

our brilliant clinical trial unit in Leeds, where we have outstanding staff and we have also really strong methodological expertise. So actually developing the best clinical trial platform actually is, it's an effort of co-creation where we work with multiple stakeholders to do this. This is not just me. This is about a real team approach. It's a privilege to lead it

but actually it's something that just can't be done with all the other incredible people who have brilliant skills. that includes our physicists, it includes engineers, computing technology, methodologists, clinicians, imaging experts, and patients. And equally, we can't do these trials without the patients who are actually

happy to or willing to participate in the research and also vitally, where they're happy to do so, provide consent for access to their biopsies and their scans and their patient material. Because that's how we actually design the next set of trials. You know, we want to actually develop new questions. So the team science approach is absolutely key.

Naman Julka-Anderson (31:05)
So David, talked about the wider team. Do want to tell our listeners about IMACC

David Sebag-Montefiore (31:09)
Yes, that's an even bigger team. So IMACC is the brainchild of a close colleague who I've worked with for many years now, Karen-Lisa Spindler. She's a professor of clinical oncology at Aarhus University. And she also works in anal cancer. So Karen-Lisa's vision was that we needed to bring together a group of people under the umbrella of a consortium, which is the International

Multidisciplinary Anal Cancer Consortium or IMACC for short. And the vision for that is to connect all of those disciplines together by bringing them together. So we've now held three IMACC conferences over the last six or seven years now. But in addition to that, and during lockdown in particularly, we ran multiple webinars

around research topics and clinical topics in anal cancer. So we were delighted and privileged in Leeds to be able to host the third meeting and for both of you to come to that meeting, which brought together 135 researchers and clinicians from across 15 countries across Europe. And it was really brilliant to bring those people together. And we had a

we had a full two day meeting in Leeds that was very well attended. And I think those opportunities for in-person conversations and eat those coffee and tea and lunch and dinner sort of interactions are incredibly value for sharing of knowledge, sharing of ideas, building future collaborations. And so the next one is going to be held in Bordeaux.

⁓ And that's going to be around September, 2027, but the date's not fully finalised yet. But I think IMACC is a really important opportunity for people to come together. We also have some plans in place to try and secure funding to actually bring researchers together to develop a research network, but that's work in progress yet

but I think the most important thing is actually to provide opportunities for networking.

Naman Julka-Anderson (33:06)
And yeah, thank you for the opportunity for having us at IMACC. We did quite a few short episodes with lots of different, very intelligent people. were definitely bits of science that went well over my head and it made me read up a lot on the train home, but it was just a lovely day. And I think reading a lot of the posters and stuff, all the work that goes into this, as you said, it is a rare cancer, but it is very treatable if caught early.

And it was just really, yeah, really inspiring. And then the patient panel at the end, I think was always gonna be my favourite. It was an amazing day.

David Sebag-Montefiore (33:33)
Yeah, thank you very much. And we had the privilege of having both Rosie and Michael, were both patients who participated in Act IV. Rosie had the standard dose and Michael had the lower dose and their experiences were different. And Michael recently posted on LinkedIn in response to one of my recent posts about how

he felt that his treatment had really transformed his life and he was fortunate not to actually have as much of the long-term, short-term and long-term side effects he was led to expect he might actually experience. But I think patients are at the heart of our research in Leeds. across the board in the University of Leeds and at Leeds Teaching Hospitals Trust, we've always had a long-standing philosophy about

putting patients at the heart of what we do. And that not only involves their participation in clinical trials, it's about the design of the trials. And actually we're also very committed to involving the patients in the design of the more fundamental research and the biology research. So in developing our future research funding applications, we involve patients in that and actually

It usually involves the use of patient samples and therefore it's very, in our view, it's critically important that they're involved. And then finally, along the great way that you're trailblazing the communication about anal cancer, our patients are ideally placed to tell their stories. And I think that makes a really big difference to the public to hear from people who've, you know, undergone the treatment to actually hear from them.

However, of you and I know that actually it's quite hard work to get some of those stories out into the mainstream media. I'm more hopeful that the National Cancer Plan will actually provide an impetus for a greater profile and recognition in ways that you and I can campaign together on to actually get higher profile.

Naman Julka-Anderson (35:24)
Absolutely and we've got you locked in as a keynote in Belfast as well on March 21st, Anal Cancer Awareness Day with the lovely Belfast team in collaboration with Radiotherapy UK, Bottom Line and OUTpatients Charity. So we're really looking forward to that as well because it's the first big event and yeah we're just really excited.

David Sebag-Montefiore (35:41)
I think that's.

I that's a fantastic line up and initiative. It's great to have that breadth of support and I'm really looking forward to it.

Naman Julka-Anderson (35:50)
Yeah, and actually I forgot to say we've also managed to secure one of the exact team from Macmillan to come and support as well. So they've got quite a few different projects on in Northern Ireland with some of the rural communities, so the fishing and the farming communities as well. It's quite nice that everything is coming together. So yeah, and a good social as planned in the evening as well, David.

David Sebag-Montefiore (36:08)
Well, that sounds exciting and I certainly wouldn't want to miss out on the social events either.

Naman Julka-Anderson (36:10)
Networking.

Thank you.

So David, we're coming to the end of the episode. We always like to end of top tips. What top tips would you give to patients, professionals or researchers who are listening?

David Sebag-Montefiore (36:28)
So I think my top tip to patients is if you have symptoms in this area that we don't talk about, don't be embarrassed by it. If you're worried, get some advice from your GP, particularly if you have a lump that's not going away, you have changes in your bowel habit with a lump or bleeding, it's good to get advice to get it checked.

So I think that is the fundamental key message for patients. I think one of my key messages is actually to say thank you to all the brilliant teams across the country who are treating patients with anal cancer. They really bought into the PLATO trials and supported that. And it's allowed us to make big progress and actually change practice.

So I think one of the aspects of the cancer plan is probably not a top tip, but it's an important area to watch is that there's a recommendation

that highly specialist teams actually to have some oversight to optimise care across the country. And I think that's welcome because I think sometimes all of us are challenged by certain situations where we're trying to decide what is the best way to treat this individual patient. And actually sharing expertise and knowledge can only produce the best outcome for that. So I think my main tip I've covered for the patient

and I think just say thank you to all the teams who've actually participated in the research because we couldn't have done it without you.

Naman Julka-Anderson (37:48)
Amazing, thank you so much and it's been a real pleasure to have you on chatting with us today.

David Sebag-Montefiore (37:52)
Thank you very much for inviting me. I've enjoyed it.

Naman Julka-Anderson (37:54)
Thank you everyone for listening to Rad Chat with me, Naman Julka-Anderson and Jo McNamara. So our next guest to feature in the final episode of this series will be Michael Anderson talking about his experience of anal cancer and the charity Bottom Line he founded. So thank you for listening and take care.

Naman Julka-Anderson (38:08)
You can use this episode as part of our free, continual professional development, accredited content, which offers flexible learning that fits your busy schedule. Just check out the show notes for the reflective questions, links to literature and resources, and a link to complete the form to receive your accredited certificate.

Jo McNamara Rad Chat Host (38:24)
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Naman Julka-Anderson (38:34)
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Jo McNamara Rad Chat Host (38:50)
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Naman Julka-Anderson (39:06)
If you like what we're doing, buy us a coffee, keep us caffeinated, go to our website to find out more. Thank you all for listening and take care.