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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.
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)
We make advanced knowledge engaging and accessible, supporting continuous learning and professional development without compromising patient care or personal time. By providing insights into both technical skills and career development, helping you progress confidently in your field and shape your professional future.
Jo McNamara Rad Chat Host (00:39)
Just to let you know, our episodes may contain sensitive and difficult topics that you may find distressing or triggering.
Naman Julka-Anderson (00:46)
This is episode number three as part of our anal cancer series. 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. Today we'll be hearing from our guest, Ms. Tamzin Cumming, about anal cancer diagnosis, anal intraepithelial neoplasia, and her incredible role as a consultant colorectal surgeon. Hi Tamzin, how are you?
Tamzin Cuming (01:12)
Hi, how are you?
Naman Julka-Anderson (01:13)
Thank you, nice to have you here on the podcast. Would you mind just starting in telling our listeners a bit about yourself, please?
Tamzin Cuming (01:19)
Oh so thank you and thank you for inviting me onto the podcast. I am a colorectal surgeon so I started in my training, had a patient with anal neoplasia which is or intraepithelial neoplasia which is the pre-cancerous stage of anal cancer which is relatively rare. I'd never seen it before. I was about sort of three, four years into my
resident training and I happened to be at the Homerton hospital and I was talking to one of my ex junior doctors who was by then a sexual health consultant because surgeons take forever to train and she told me that there was an expert in this at the Homerton in the sexual health department so when I was there I went to visit Mayura Nathan and saw that he was doing something called high resolution anoscopy which is looking at the pre-cancer with a microscope.
And I got very excited about this because it seemed to be the obvious answer. But I was told by my surgical of seniors that they didn't do that kind of thing. And so I made a sort of promise to myself to come back when I was a consultant and to learn high resolution anoscopy. So I did.
Jo McNamara (02:25)
That's amazing. We often ask people how did they get into their field and that perfectly illustrates how a patient has kind of forged your career almost into making a change in practice.
Tamzin Cuming (02:37)
Absolutely, I I think in her case she had suffered so much and no one seemed to have an answer and yet the answer was sitting there, round the corner and it also showed how we all end up in little silos in our specialties and the HPV virus that as you know causes anal cancer, it doesn't care about whether you've trained in general surgery or trained in sexual health, it'll go where it wants.
And the fact that doctors aren't able to talk to each other, or clinicians in general, is one of the barriers that leads to good care for this.
Naman Julka-Anderson (03:07)
If you think back to your training, was there much around anal cancer awareness in general for people?
Tamzin Cuming (03:14)
No, no. What happened with anal cancer is it used to be a surgical problem and then in the 70s radiotherapy came out and radiotherapy obviously worked better than, I mean not obviously, it had to go through a number of trials but it became clear to surgeons that radiotherapy was the first line option
significant anal cancer. And that meant, I think, that over those decades after that, that anal cancer almost got dismissed by surgeons. You found you're like, then it's a radiotherapy. We don't need to bother about it. And it's only very occasional cases where the radiotherapy doesn't work or whether the cancer comes back. Then you need to come back to surgery and have what we refer to as the big op,
you know, surgeons are really there just to biopsy, make the diagnosis and then oncologists do the rest. So I think that's why it became just a little footnote in surgical training, apart from the fact that it is a rare cancer in the general population, certainly when I started training, it was down at about one per hundred thousand per year, which is the definition of a rare cancer, something that occurs that rarely.
That's one in 100,000 people per year. Since that time, in the general population, the rate has gone up. So it's now 1.8 per 100,000 per year. When you look at women, it's actually gone up mainly in women. So it's doubled the rate of anal cancer in women. And it continues to rise. And given that we now have HPV vaccination, which is
kicking in quite early for cervical cancer and there's going to be a delay to when that HPV vaccination helps with anal cancer, about a 20 year delay. We are now seeing that in certain populations of women, anal cancer is now more common than cervical cancer. So the situation has changed since my training and there needs to be a higher awareness of anal cancer for patients and for the doctors who are likely to see this present.
Jo McNamara (05:09)
Tamzin, for anyone out there listening thinking, well, actually, I don't know the signs and symptoms for anal cancer and kind of the diagnostic pathway. Can you just explain for us kind of what a patient can expect to experience going through that?
Tamzin Cuming (05:22)
So the problem with anal cancer, I mean it should be quite easy to find, it's right there on the outside. It's so near the outside you'd think that quite early on you would get symptoms. But people can end up presenting two years after their symptoms started. When I say presenting I mean coming to see someone who will make a diagnosis. And that is because the symptoms are almost identical to piles. Or what people think of as piles. So a bit of bleeding
when you go to the toilet, a lump, and it's sore, it's painful. But the other problem, which we don't talk about a lot, is that anus is quite a taboo area. Even for gay men, for whom anal cancer is more common, and particularly in immune-suppressed gay men living with HIV, anal cancer is about 45 times more common than it is in the general population.
But for everyone, talking about your butt, getting a doctor to look at your butt, and actually even for doctors, they're kind of reluctant to look at people's bums as well. So they think, oh, you know, imagine that as a GP, you see 100 people with rectal bleeding and a lump. And so you just assume everyone's got piles, but one in 100 is going to be an anal cancer. And I've had, you know, recently a fantastic GP looked at a lady and said, oh, I don't like that, and sent her in as a query cancer. She got diagnosed within two weeks
of her symptoms and has had a really good outcome. And other people unfortunately get put off, told to take some piles creams and they know the pain's getting worse, the bleeding's getting worse, the lump's getting worse. all I would say to someone with those symptoms is keep going back, make sure someone looks at it and if the initial treatment is not working then within a couple of months get yourself sent for a second opinion.
The other thing I think the population in general doesn't know is that we do have a faster diagnosis pathway. So there is a slow pathway of, you know, this patient has got piles, can you do something about it? Which takes about six months to see a consultant surgeon or their team. And obviously lots of trusts are now looking at different pathways and trying to get that first opinion more quickly or how they might change outpatients. But we do, when a cancer is suspected,
you are supposed to be seen faster. And so to be sent in on that pathway when you have these symptoms, that can make a huge difference.
Naman Julka-Anderson (07:35)
You know how, obviously breast cancer, there are self-checking campaigns and stuff. Do you think there is a possibility for something for anal cancer, ever?
Tamzin Cuming (07:42)
Such a good point because we don't have that at the moment. So when we have patients who are high risk, that's certainly patients of mine who've been through the pre-cancer stage. So I try to prevent anal cancer by treating the pre-cancer essentially, but also I educate patients, particularly those who are at high risk of anal cancer despite our treatment, and they often
will do self-examination. So we say to them, if you feel any lump, if you get any bleeding, phone our nursing helpline, we'll get you straight back in. And obviously those are this sort of subset of patients who are at particularly high risk because they've already had precancer in that area. But in general, I think it's quite hard for people to know what they're feeling. It's hard for doctors to know what they're feeling as well. And so...
We should have an education campaign that allows people who are particularly at high risk to be able to feel that area. But I think people, again, because of the taboo nature of the area, are often reluctant to examine themselves down there. Saying that with breast cancer, think a few decades ago, that was also taboo. And women were also reluctant to examine themselves. So maybe it's something we need to work on.
Jo McNamara (08:55)
Need to get little handheld mirrors don't we Tamzin with check your butt on it.
Tamzin Cuming (09:01)
Yes, absolutely. And
there are people who doing that, who are checking themselves down there. And I think when you're fully informed, it's an area of your body you can get to relatively easier. It isn't an internal organ. So it is sad that people end up coming with a cancer that's been there, they've known about for two and a half years, and it's spread to the lymph nodes. they been aware, they could have pushed
Jo McNamara (09:06)
Yeah.
Tamzin Cuming (09:26)
and advocated for themselves or had their doctors been aware, someone could have the diagnosis quicker.
Jo McNamara (09:31)
Think as well sometimes it's about being brave enough to have conversations with your partner so you know if you discover something on your partner or you see something it's about kind of going actually I'm not sure about that is that normal and I know this is it can be an awkward conversation to have maybe not in the moment but I definitely think it's a way as well that
we can help support each other, know campaigns looking at testicular cancer does the same, it? If you feel a lump on your partner's testicles, tell them about it, do something active so that they can go and get it checked out. So lots of things that hopefully people can take away and start thinking about how they kind of have these conversations with each other.
Tamzin Cuming (10:11)
at night.
Jo McNamara (10:21)
Tamzin, in terms of kind of your
role in research and studies, I know you're heavily involved. What are you working on at the moment or most recently been involved in?
Tamzin Cuming (10:30)
So, yeah, I'm really interested in trying to sort of get this field to catch up with other fields. It feels like it's been a bit of a Cinderella subject because it falls between these various specialties. And so I think for a while nobody has really owned it. So there's a lot of work being done on cervical cancer and cervical cancer prevention. And obviously, cervical cancer is so much more common.
But the anal cancer is not really thought about by gynaecologists. So what we've tried to do is take some of the work that's been done on HPV-related cancers from that and look at how that can be applied to the anus. there is, we've had a big, in the US they did a big randomised control trial, so the highest quality evidence, which showed that treating the precancer in people living with HIV can reduce the risk of anal cancer.
And that sounds obvious, but you actually needed to show it because there were certainly people saying that anal precancer could be just left alone and it didn't cause cancer. So that has kind of answered that question. But we don't have any data on women, most of whom do not have HIV when they get anal cancer. And in my group at the Homerton, so we have one of the biggest units in the country, indeed in Europe.
About 50% of our patients are women, because we take patients who've had high grade pre-cancer, so high grade AIN, we don't do screening. So one of the things I've looked at, or we are in the process of looking at, is whether a further test on the AIN can predict which ones need treating to try and prevent cancer. Because in that big study in the US,
they had to treat 400 cases of precancer to prevent one cancer, which is a lot of people going through potentially unnecessary treatment and also the worry associated with that. And there are side effects to having the AI and treated. And so some work's been done both in the cervical world and also in a unit in Amsterdam, who I'm collaborating with at the moment, as well as other areas of the world for looking at DNA methylation
⁓ to see whether patterns of how the DNA has been affected epigenetically and I'll explain that, will help tell you which are the bad high grades. So that's one area we're working at and we particularly want to do that work in our female population because the data is so sparse for women, which is not the only field where women are lacking in research and the evidence.
but we're doing our best to turn that around in this field.
Naman Julka-Anderson (12:59)
When you said to treat the pre-cancer, what is the treatment?
Tamzin Cuming (13:03)
So anal pre-cancer is, or AIN, it's also known as high-grade squamous intrapathelial lesion. So the fact that it's got at least three names, if not four names, shows, how many different specialties have come for it, because it's also Bowen's disease under the dermatologist. Everyone's got a different name. And there also are multiple treatments, which also shows that not one of them works brilliantly. So any time in...
medicine where you find there's 20 potential solutions to something. know that there is not 20 solutions to an appendectomy. You either take it out or you give them antibiotics. There aren't really any other treatments. we have, essentially we're trying to fight a virally caused disease. So you can try and attack the virus. So there are creams and things you can put on that are anti-HPV.
And they sound nice, cream sounds nice, but actually they lead to quite nasty side effects sometimes. It's almost like having sunburn on your bum. So that is something like imikrimod. There's a nicer version based on green tea called sinecatechins. So that has got a trade name in this country, cataphen, and in other countries it's called verigen. There isn't a lot of evidence for that around precancer.
And then there's a cream version of the chemotherapy agent 5-FU, 5-floroylacil, which is called efudix used by dermatologists. are not, creams in general are not generally used by surgeons. So again, different specialties will go for certain options first. Surgeons tend to like to cut things out, but if you cut out large swathes of the anus, you can end up with a narrowed anus, a stenosis, or affecting the continence of someone.
And you have to bear in mind that when someone has a lot of anal precancer, they are quite likely to have an anal cancer there. And if they end up with an anal cancer and all your precancer treatment, they can end up with the worst of both worlds. Because for well-done chemo radiation for anal cancer, the outcome can be fantastic. So they can be continent. They don't need a stoma. Chemo radiation works
very well for anal cancer. It's one of those cancers where this is why surgeons have heard less about it. You send patients to oncology. Quite often they don't come back because they're cured by the chemo radiation. And so we always have to balance both, A, do we need to treat it at all? Because one study showed that AIN2 and 3, which is the subdivisions of the pre-cancer, about 25 to 30% can go away on their own over six months. So it's quite a nuanced discussion.
Do we treat it at all? Do we wait to see if it goes away and then only treat the persistent ones? And then when we treat it, in between cutting it out and using creams is ablation. So most of what I do is ablation, partly because people have often had the creams before they get to us and it hasn't worked. And so we can ablate using laser, using electrocautery which is essentially a sort of burning stick.
And we can ablate using a topical liquid that has to be put on in the right place called trichloroacetic acid. So those are the main three. But there are other ablative techniques that have come out and are being trialed. They've all got their pluses and minuses.
Jo McNamara (16:11)
So many variables that you have to take into consideration and I'd imagine as well presenting those to the patient to kind of talk through what they feel would be optimum for them as well being really important. In terms of kind of the maybe the later stage diseases and your interventions, what can patients expect from a kind of surgical intervention if potentially they did have to have quite a lot of surgery in the anal?
region?
Tamzin Cuming (16:38)
So someone who presents with an advanced cancer will get a first thing they need is a diagnosis of that. So we need a histological diagnosis. If they're in my clinic, I can do that with local anesthetic in the clinic. But sometimes it looks like a cancer, but the biopsy just comes back as a pre-cancer. So quite often they need to go to theater and you need to do a bigger biopsy. They will then get staged.
The basic staging is an MRI scan. That will tell us the size of the tumor, so that tells you the staging. So it's quite simple in anal cancer. If it's two centimeters or less, then it's a T1. If it's between two and five, it's a T2. And if it's five centimeters or more, it's a T3. And then it spreads to the lymph nodes first, and they are either the lymph nodes outside the bowel
mesorectal lymph nodes or the lymph nodes in the groin when it's nearer the outside, nearer the skin draining region. And those are the inguinal lymph nodes. So those will affect the sort of likelihood of recurrence, that sort of basic staging based on the tumor size and whether the lymph nodes are there. And then we always get a PET CT and that will look for spread. So anal cancers normally
will spread first to the liver if they're going to spread. But they can be unpredictable. They can be odd. we've had one that has spread to the thyroid. We've had one that's spread to the mediastinal lymph nodes. Sort of kind of slightly wacky. Really, it can be a slow process, pre-cancer stage. And then once it becomes an invasive cancer, certainly a large invasive cancer, it can be a really aggressive and unpleasant cancer.
Saying that, chemo radiation can be very successful and a lot of the time these days we're trying to avoid a stoma bag. That's the first thing people think about is, I going to need a If there is a concern either that the tumour is so big it's blocking you so you won't be able to go to the loo, then you might have to have a bag temporarily. If it looks like in a woman it's starting to spread
into the vagina and therefore once the radiotherapy has got rid of it, it almost leaves a kind of scar but it can leave a join between the bowel, the front and the back. So if there's a concern there's going to be that join, that fistula, then that's the other time we would recommend a stoma bag. But other than that we try and get the person to chemo radiation as soon as possible because it just works like magic. Shrinks the thing away and leaves this scar behind.
What I do is I then see the patient six months afterwards once their scans have shown that it's all gone. So there's about a 15% chance on average that it will either persist or come back. And that decision is made at six months. So you repeat those scans, the MRI and the PET, and you have a clinical examination. So we have a look with high resolution anoscopy because we feel we can see very, very early persistent disease, certainly on the mucosal surface or on the outside
before it can be seen on those scans. If there's going to be persistent disease, so if you're in that unfortunate sort of 10 % where the radiotherapy has worked very well but it hasn't completely got rid of it, or it's worked completely but then the thing comes back within a year or so, then the next stage is an abdominal perineal excision. So that is the big op, that's when you have the anus cut out. Usually there's plastic surgery to...
patch the gap, which involves using a flap either from the backside, the buttock, or the leg. Sometimes the abdominal wall to swing around, put that into the space that's left. And at that point, you do end up with a bag, which is a permanent bag on the belly.
Naman Julka-Anderson (20:17)
Tamzin, just for my Grey's Anatomy mind, can you talk us through those different surgical options if you had to explain it to a child? I'm just quite interested to know what you actually do and then also how you reconnect after a temporary stoma back to a fully functioning bowel and anus.
Tamzin Cuming (20:32)
So in terms of what is done, usually for the abdominal perineal excision, we go into the belly to free up the bowel. So that is often these days done keyhole or robotically. So you have to free the bowel up from all the areas around it and dissect it. So that's done inside, so it's kind of free to come out. You also want to make sure that you've got the whole package. So the bowel is sitting there
with fat around it and in that fat is lymph nodes. So when you do this procedure, you're almost always doing it after radiotherapy, which makes everything bit more stuck inside. But you have to get that package out entire so that all the lymph nodes that are in there are brought out with the specimen. Sometimes, unfortunately, it can be a bigger operation
if the remaining cancer or if the original cancer was quite big, it may have become stuck to nearby organs such as the uterus, the ovaries. And that's why we do all those imaging to decide which bits are affected. And all of that has to come out in one go. You can't go back and get other bits afterwards because cancer, those cells will spread. need to take it out as a block. So that decision is made before the operation. If it's just the abdominal perineal excision, then the...
the bowel is freed up, the middle of the bowel, so usually the descending colon, is freed up or the sigmoid colon and brought up to the left side of the belly as a stoma. So we have to make sure that that hole for the stoma is made big enough so that the stoma has enough blood supply but not so big that you end up with a hernia. And unfortunately having a hernia with a stoma is extremely common. These days they...
you might actually have a mesh put there at the time to try and prevent a hernia because this is going to be your stoma for life. Then the bowel is, the rest of the operation is then completed from below. And what we now do is we take quite a wide area around the anus. So the anus is closed off. Quite a wide area is excised of skin around that
and make sure that we haven't left any cancer behind. And then that is carried up so that you also take some of those muscles. So this is called extra levator abdominal abdominal perineal excision, the this really sort of in the early 2000s it was found that there was a kind of natural waste. You follow the bowel down there's a bit where the pelvic floor the muscles are that obviously hold everything in.
⁓ The surgeons were following that natural curve and that is actually that exactly that point where you were getting positive leaving cancer behind which you really have that one chance to get it If you leave some cancer behind then you're much higher chance of cancer coming back If you can get it all out you haven't left any cancer behind and you've got all the lymph nodes Then there is a good chance that this will be curative It's a big operation, but it can lead to long-term cure.
Naman Julka-Anderson (23:23)
How long does take time wise?
Tamzin Cuming (23:24)
It depends. I think it will take at least four hours, but sometimes longer, depending on the robotic side, which can...
take longer to add in the robots, but it means that you can be quite precise. Operating down in the pelvis is sort of down and fact round a bit. It can be sort of a deep dark hole and the robots have shown that operating both on prostate and rectum, it is a lot easier to see and to manipulate the instruments using the robot. So when I say using the robot, it's basically...
they call a master slave robot so the surgeon is sitting at the console making movements and the robot is then doing those rope is directly responding to the movements of the hand of the surgeon so the robot isn't doing it on their own not yet
Jo McNamara (24:12)
Not
yet. Tamzin, as a therapeutic radiographer, one of the things I'm really intrigued about is the impact of radiation on tissues. And you mentioned it around kind of the impact of fibrosis. But as a surgeon, what does it look like? What are we doing to those tissues that you can visibly see when you open up a patient?
Tamzin Cuming (24:33)
I don't open up a patient these days. My work is all the pre-cancerous stuff. What I do, what we haven't mentioned actually, is very early cancers, which is the sort of ones I find, I can try and stop them coming to you by cutting them out. So as long as I've got a one millimetre margin all the way round them, really as long as they're usually on the outside skin and they are one centimetre or smaller, so they're often...
in our program of pre-cancer treatment, can find a cancer and excise that. The guidelines say that you don't have to have chemo radiation for those small early cancers. And we have had cancers that are as as 0.2 millimetres. And it's felt that chemo radiation is sort of a sledgehammer to crack a nut for those very tiny ones. But I do see people after chemo radiation. And what seems to me is it seems to be, A, it's improved.
So people who had radiation, say, 20 years ago, often it still looks like a blasted heath. It's very fibrotic. What you have, I don't know how often you look at an anus, but when you look at an anus, it's got lots of little folds. They're normal. And what those folds do is give you a perfect continence. It's so well designed, the anus, it gives you perfect continence to liquid and gas.
And the anal canal itself produces a little bit of liquid, produces mucus. And when you've got an area, particularly ⁓ an area, maybe an anal cancer that's taking up, say, a third of the anus, when it's responded to the chemo radiation, you get left with this of smooth ski slope. And so you've got those little folds that are around about 3 quarters or 2 thirds of the anus. And then you've got a kind of smooth area
that allows mucus to sneak out. And it can be quite irritating for a patient afterwards. After they've got over the severe side effects of radiation, I don't want to sort of do down how hard it is to get through those six weeks of chemo radiation. And those at least six weeks afterwards while it's still working. And essentially, you've got a kind of severe case of sunburn on the bottom
when everything settles down,
it looks like is like someone who's had a too tight facelift. So it pulls the skin too tight and then that allows the bowel motion to slip out. The other thing that patients have is an urgency so because the upper bowel, so you're meaning to treat the anus, but a bit of those rays goes to the rectum and that's because the oncologist has to make sure that the lymph nodes in the rectum are treated as well.
But the rectum goes fibrotic. Normally it's a soft organ that allows poo to accumulate in it. And then it will kind of send a signal, I'm full now. You need to go to the loo. But what happens is a tiny bit comes in. It's like a rigid box. And that shoots straight out. So it gives patients an urgency, which can be quite long lasting afterwards. And I've seen people who've worked all the way through radiation therapy
haven't even told work, have just gone in late every morning, and in other people whose lives have been devastated by it. And I would say though that latter group are in the minority, but I still don't know why some people get a very severe fibrotic reaction. I have asked oncologists about this. Other people seem, you cannot tell, like it looks beautiful. All it is is just cancer-free. And I don't know
what difference that is, but I've asked oncologists and it may be something individual about patients that we can't predict at the moment.
Naman Julka-Anderson (28:01)
Tamzin, we could probably talk to you for the rest of the day, but we are coming to the end of the episode. We always like to end with top tips for our listeners. Do you have anything for people to take away?
Tamzin Cuming (28:09)
I would say mostly anal cancer occurs in, apart from the subspecialist groups where anal cancer occurs in immune suppressed people. So if you are immune suppressed, for example you've had a kidney transplant or you're living with HIV, then you are at higher risk of anal cancer. And just to be aware of that, and that any bleeding, pain or lump down below
make sure you get seen by somebody and you don't get dismissed. But for the general population, and particularly women, any pile when you're 50 or over is a cancer until proved otherwise.
Naman Julka-Anderson (28:45)
Thank you very much. Thank you so much for coming on and chatting with us. It's been very, very, very insightful. I've learned a lot.
Tamzin Cuming (28:51)
Thank you so much for inviting me.
Naman Julka-Anderson (28:52)
Thanks everyone for listening to Rad Chat with me, Naman Julka-Anderson and Jo McNamara. Our next guest to feature in this series is Prof David Sebag-Montefiore about anal cancer treatment, clinical trials and IMACC. Thanks all for listening and take care.
Naman Julka-Anderson (29:06)
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