Bowel Research UK’s Patient and Public Involvement Manager Sam Alexandra Rose is joined by Sharon Applin and Charles West to discuss pelvic exenteration surgery and its impact on quality of life. Sharon had this surgery due to squamous cell cancer and Charles “Charlie” West is conducting research into the effects of this surgery known as empty pelvis syndrome.
Transcript
Sam
Welcome to Can I Butt In, the Bowel Research UK podcast where we welcome bowel cancer and bowel disease, patients, researchers, healthcare professionals and carers to butt in and share their experiences. We’re picking a topic every episode and getting to the bottom of it.
I’m your host, Sam Alexandra Rose. I’m the patient and public involvement manager at Bowel Research UK. And as a patient myself, I’m excited to bring more patient and researcher voices into the spotlight.
This time we’re taking a look at a surgery that you might not have heard about before called pelvic exenteration, and we’re going to be looking at how this can affect a person’s quality of life and also what research is being done around this type of surgery. So I’m joined by Sharon Applin, who has had this surgery herself, and also Charlie West, who is a colorectal research fellow at the University of Southampton. Welcome both of you to the podcast.
Sharon
Good morning.
Charlie
Good morning. Thanks very much.
Sam
Thanks both for coming on. So should we start with you, Sharon, could you please tell us a bit about your story, how you’re what you were diagnosed with and how that sort of came about?
Sharon
Yeah, absolutely. In 2020, I was diagnosed with a skin cancer, which is called squamous cell cancer. It was on the left side of my anus, but at the very beginning I was informed that they thought it was a fissure tear. So I was being treated for this and also maybe piles because they didn’t quite know what was happening within that region. So I actually went to see a specialist at Poole Hospital who took one look at me and basically said that it’s not a tear, there is something more going on there and they hadn’t seen, he hadn’t seen anything like this before, so he was really a little bit concerned. And then I was promptly booked in to have a biopsy taken and the biopsy then showed that obviously this was cancer, that I had. So after the biopsy and being told it was cancer… I had no symptoms of bleeding, diarrhea and, you know, being uncomfortable to sit or anything like that, which again, threw them off the scent that this probably was cancer until the biopsy. So the plan then going forward, actually then meant that I had to look at treatment and how they were going to treat this problem. After organizing a plan which they were going to give me, the plan was then that I would have five weeks of intensive therapy. The therapy was chemotherapy at home by tablet form and then radiotherapy, which was done at Poole Hospital every day of the week for five weeks. This was carried on right up until December 2020. Then, in January 2021 I was given the all clear. And I was given the possibility that it could come back. It might not come back, but they would keep checking on me. I was clear for one year and then the skin cancer came back on the other side of my bottom. So not in the same place. But it had found another place to come to and that was the other side of my bottom. So in 2022, in January, I went back to my doctor, who has been looking after me at Poole Hospital. The cancer was quite advanced at this point and she informed me that the surgery couldn’t be done there, so I would have to go and see another consultant. I then went to Salisbury Hospital and saw a consultant there and unfortunately again after taking biopsies and looking at what from scans, what was there, I was sent to Southampton Hospital where I had my surgery. The surgery was carried out there, which took some time to get the surgeons all together. I had a 15 hour surgery. And once coming round from that surgery, obviously I had two stoma the bags. So living the life with two stoma bags and waking up knowing I was going to have them, but to actually then get your head around where you are, how your life’s going to be, the changes you’re going to have to make, was quite difficult. Very difficult, very emotional, very hard to get your head round and it still is now because it’s only September since I came out of hospital last year. So it’s still young and it’s still raw really. In the sense that everyday life is quite a challenge. It has changed my life completely. I can’t just walk out the front door anymore and think about just going to the shop like normal people do. I have to think are my bags done? Am I safe to go out today? How long it’s going to take me. Take my kit with me just in case I have a hiccup. Take extra clothing with me in case there’s a hiccup. So yeah, it’s very difficult from day-to-day.
Sam
Gosh, I can. I can’t even imagine. And that’s such a big operation, isn’t it? 15 hours, I mean, is that like the one of the longest operations a person can have, I wonder. And it sounds very difficult to recover from. Must have been very painful.
Sharon
Yeah, the team are very good regarding your threshold of pain, you know they’re there every day. How are you controlling your pain today? You know, is what we’ve given you working. So you know when you’re in hospital, that’s fine because you can, you can get that pain sorted out quite quickly. When you come home, you’ve got to learn all over again. You know, having two bags when you’re in hospital, you push a button and a nurse comes and changes your bag for you when you get home. It’s like ohh husbands at work. I’ve got no help. I’m gonna have to wait for him to come home to help me with my bag. And you know, so you have to think. You have to think outside your normal zone that you would be in every day of the week. You know you can’t just think let’s go shopping. Because you’ve got to think ahead, where am I going to park? Because I can’t walk the distance that you normally probably would walk if you’re going shopping and I have to think about exactly where I’m going to be. I can’t just go mentally because once I get there, I go into panic mode and think where, you know, should I have looked at where I’m parking first and should I have done my sort of like survey of where I’m going for the day. Which I do have to, yeah. It is. It is. And where you say Sam about it being one of the longest operations, that operation was actually cut down. Initially I was told it could be over 2. Days.
Sam
Oh wow.
Sharon
But luckily enough, because of the team that was put together, which was a team of five, we started at half seven on the Friday morning. And from that, the operation was able to then continue and go through the night and they obviously operated on me right the way through taking it in turns, I suppose with the surgeons who could then have a rest and come in but yeah. I know from my notes having my plastic surgeon was four hours of actually sewing me back up and putting the sleeve that I had to have removed from the skin from my stomach to form the new sleeve to where my bottom used to be and where my vagina used to be. That was four hours, four and a half hours actually of sewing me back up. And taking the muscle from my tummy to put in the empty pelvis, where everything was removed from. So yeah, as you say, it’s one of those operations I would imagine is probably one of the longest but not being medical, I don’t know. Charlie might know better than me, but yeah, I would imagine it could be one of the longest ops there is.
Sam
And what is actually removed, for people who aren’t familiar with pelvic exenteration, what is it that they take out?
Sharon
OK, I can imagine it might be different for some people to others. I’m not quite sure on that one, but my personal experience that I had taken out was I had my bowel, my vagina, my clitoris, my uterus, everything that’s in the pelvis was actually physically removed, including part of my pelvic bone and also my pubic bone. Part of that was removed because the cancer was millimetres away from that area, and to make sure the disease hadn’t started feeding into there, part of that was also taken. Nerve ends were removed as well, so that’s why I have the difficulty now with walking and numbness in the tops of my legs. So a lot, completely empty. Everything completely gone. So I don’t even have a belly button anymore because the skin they use to sew you back up is taken from that area.
Sam
Oh, so it’s just flat?
Sharon
Yes, so I have a flat tummy. There is no belly button. So there is, there is. You have to have a lighter side of this surgery. I learned to laugh a lot and make funny comments about, you know, how I was now. I used to say I’m not a female anymore, but I’m a Barbie doll because I don’t have any of the bits a lady has anymore but I do have a Barbie.
Sam
Yeah, I think having a sense of humour around cancer is really important. It certainly helps me to get through my experiences as well. So shall I bring Charlie and at this point then, because you’re doing some research into pelvic exenteration, could you give us an overview of what you’re researching?
Charlie
Yeah. So I think that Sharon’s already said these really long operations, 15 hours is a really, really long operation and they can take longer than that sometimes. And sometimes shorter. And as Sharon has said, there’s a huge amount of, to control a, you know, really difficult cancer, you might need to remove a lot of organs in the pelvis and bits of the pelvic bone and the skin. And I think what’s really important is that reconstruction aspect. So how you put the body back together again after the surgery and to get people back to as good a quality of life as they can get, cause it’s huge. I mean, it’s life changing surgery. I don’t think anyone really comes through this operation exactly the same as they were, you know, before it. It takes a long time to get used to and then I’m interested in looking at the reconstruction aspects and how that can reduce complications and try and get the best quality of life for patients after their surgery.
Sam
I suppose it must be something quite difficult to research if people are having the operation for various different reasons and different types and locations of cancer and then being reconstructed in different ways. Yeah, it sounds like there’s a lot of variables to contend with.
Charlie
Yeah, it is difficult and it’s difficult to… It is very difficult and it means that there’s quite a lot of variation in what surgeons do in terms of reconstruction. And you’re absolutely right, these pelvic exenteration might be done for tumors arising from the skin, like Sharon’s head or from the rectum, the bowel or maybe the bladder or the reproductive organs, or even sometimes the connective tissues or the bone as well. And those are all different types of cancer. And it might be done for disease that’s already been treated with an operation but has come back again. Or it might be done for disease that is quite advanced when it’s first diagnosed and you’re absolutely right, there’s a… it’s a difficult group to research because each patient almost has an individual operation designed specifically for them it’s and it means that again, the reconstruction that needs to happen might again have to be specific for that for that individual patient.
Sam
Something that seems like it might be quite common between different patients is this empty pelvis syndrome that you’re looking at. Could you tell us a bit about that?
Charlie
Yeah, so, it’s not a very well defined problem, but we think that patients that are having this, this big surgery where they have lots of their pelvic organs removed and they’re left with a large space at the bottom of their body, where all these organs were in the pelvis. And often, as Sharon mentioned as well, patients have radiotherapy before their surgery or during their surgery and that can also damage the pelvis. And it can lead to problems with ongoing infections in that area or it can damage the intestine in that area. So if you want to look at reconstruction and improve, you know and try and get the best outcomes for patients, trying to address this problem, the empty pelvis syndrome is an important part of that and that’s the real focus of what I’m looking into.
Sam
How’s the research going so far?
Charlie
So it’s going, it’s going really well actually. So the first part of this is to try and agree a way to measure the impact that the empty pelvis syndrome has on patients. At the moment there’s not really an agreed way of saying this is how bad someone’s empty pelvis syndrome problem is, so that that’s been the real focus to begin with. So I’ve been using something called consensus methodology, which is where you get people to try and agree on a problem that is difficult to define and to research and if you can get people to agree, then you can start to produce better quality research and try and find the best techniques to help patients more quickly, whereas at the moment people are reporting research in this problem in different ways, and so when you try and put research together from different hospitals, it’s quite difficult to compare that research to find out exactly which technique is better. So the first part of my PhD has been trying to getting an agreement on the empty pelvis syndrome and we’ve been doing something called a delphi study, which we’ve just finished in the last couple of weeks actually.
Sam
So what are the next steps then, or what do you hope will come out of this research?
Charlie
So an important part of the methodology is going about it in a way where you get lots of people’s opinions, lots of people agree and we’ve been lucky in that I’ve managed to engage with a group called the PelvEx Collaborative and that’s an international group of hospitals that that do this kind of complex surgery from all around the world and we’ve had healthcare professionals contributing their opinions from many different countries, which has been really great. But we’re very conscious that all these world experts in surgery, they’re not experts in actually suffering the consequences of complications after the empty pelvis syndrome and people like Sharon that have had this surgery have been really important in getting involved with this because we’ve also, in terms of the study we’ve treated the patients’ opinions on this problem just as much as, we’ve given those the patient opinions just as much importance as we have to the healthcare professionals. So we’ve got patients to vote on statements and we’ve had meetings with them online. So what we hope we’ve produced is something that is meaningful for patients and surgeons together so I think that gives a more powerful and more meaningful research going forward.
Sam
Absolutely, it’s definitely really important to get patients involved in research, I think, especially when it is going to affect people in in lots of different ways, absolutely. And Sharon, you’ve been involved in this research, haven’t you, in helping with this.
Sharon
Yes, I have. It’s been quite interesting actually to see what people find more important than others. You know, one person might find one issue very important. I found they gave it a nine say and I gave it a seven and it was quite interesting to look at it overall. To see, you know it’s probably like in the morning you get up and say I like tea and toast and you say ohh I couldn’t eat tea and toast. It’s seeing what actual people think is most important in life. You know, which way round they look at different aspects of the surgery. So yeah, it’s been really interesting helping Charlie and hopefully we can carry on doing something like this together because mentally it helps me as well to talk about what’s happened, but it also helps to listen to other people’s inputs as well.
Charlie
Yeah, we had some meetings online, didn’t we with patients from across the UK, and it was really nice to, even though none of you had obviously met before, you’d all been through something very similar and had problems, and it was really nice to see the, well, just to see the support almost that you could, that you were getting in the meeting and realizing that you’re not alone in having these problems.
Sharon
Yeah, because one of the problems that Charlie’s just mentioned is infection, which I’ve had a couple of times now, which obviously comes from the fluid build up in the empty pelvic area. So after that happened back in March, my new skin has actually opened to a very tiny hole. And I now drain from that hole the fluid that builds up in that empty area. And that is continuing to drain all the time. It’s some days it’s more than others, but I’ve just had my CT scans, MRI and PET scan yesterday. So I’m hoping the results next week when they look at them at Southampton Hospital at their meeting will show hopefully the infection has either subsided or is not as bad as it was, but that’s only an infection caused by the fluid being in that empty area.
Sam
And so how did you come to get involved in being in this this research then, Sharon, just for people who might be listening and think oh, I’d quite like to be involved in research as well.
Sharon
Yeah, I was in bed one day and this nice young lad came and saw me and said “hello, I’m Charlie West”. He said “I would like to ask you a question” and he explained what he wanted to ask me and at the end of our chat, he asked if I would be interested in doing this and I said yes, I would and obviously, I signed a consent form to say that I would do these things for him. But also, the same thing happened when they came and asked me if I would donate my organs before surgery and my bone to cancer research, which also happened to me through Charlie’s side of the research. So yeah. So I signed two pieces of paper. One was to help Charlie with the empty syndrome. And the other one was for them to take my stuff away that they took from me to look into the research even more of what was going on.
Sam
Did you have any reservations about saying yes to any of that, or was it an easy decision for you?
Sharon
No, it was an easy decision because at that time you think your life is like changed completely and you can’t do anything anymore. You know, you’re not a person anymore. Do you know what I mean? And to be able to, for somebody to come and say would you like to help? You think oh, I am important. You know, somebody still wants, you know, to involve me in something. So yeah, I think that’s a really good, Yeah, it’s a mental thing, but it’s a good thing, yeah.
Sam
Yeah, it’s like not just being seen as a patient, but somebody who’s very active and that, yeah, helps with identity, I can imagine.
Charlie
Absolutely, yeah.
Sharon
Yeah, absolutely. It just makes you feel like you’re not at the end of a very horrible thing that’s happened to you. You’re actually seeing it and carrying it out the other side.
Charlie
Yeah, and I think you become, I think if you get involved in research a lot, you almost become a part of the, a part of the research team really. And I think that it’s really, I mean it must be, it’s nice to meet – I’ve met with you quite a few times now, haven’t I, either over the telephone or face to face or on meetings and it’s nice to… and I, you know, and we see you like one of the research team which is, and you are really and having that influence on the research both, you know, with the recovery aspect but also the more looking at the tumor under a microscope and trying to understand why these things develop and you know testing various treatments on it. You know, who knows where your actual tumor is now, it’s probably in some lab somewhere that someone I’m sure is trying to get as much information out of it to help future people. And you know, that wouldn’t be possible without your help.
Sharon
Yeah, I think that side of it is, is one that you don’t get to see, which would in one day maybe somebody will come back to me and say this is your paper from what we got from you. You know, you don’t –
Charlie
Yes, yes.
Sharon
– know what will happen and that would be quite interesting to actually say or somebody to say to me, you know, this is what we found. This is what we’ve seen. But yeah, Charlie’s right. We’ve all become really good friends, and even my team at Southampton are all in first name terms. I don’t call them doctor of this or professor this, you know, they are first name terms and even the nurses. When I go back now, if I don’t go to the ward and go and see them all, you know, dear oh dear, I haven’t heard the last of it. So yeah, it’s amazing, amazing people.
Sam
Well, that’s wonderful to hear and a great endorsement for patient and public involvement, I think and just goes to show as well that there’s multiple different ways that you can get involved in research. I think that sometimes when people hear the word research, they think about scientists in lab coats in the lab, looking at things under microscopes. And that might seem quite inaccessible to people, but actually there’s, as you’ve demonstrated, these different ways to get involved in research as well.
Sharon
Yeah, absolutely. You know, there’s lots out there. You know, I’m now working to do some bits with Planets, which is one of the cancer research – not research, sorry – the cancer team that do charity work with Southampton Hospital, so you know that I’m now going to be doing some bits with them for their like their stoma people, that they have at meetings and maybe do a small talk on actually what I’m talking about with you today. So yeah, it’s there’s, you know, and I’ve met you, Sam now as well. Over the last 5-6 months. There’s Charlie, there’s you. And there’s Planets. So you know, even though you have this horrendous surgery, there’s just so much more out there after surgery.
Sam
Absolutely. Well, one of the other things I was going to ask you, Sharon, was if there is anything else that you think that people should be researching about pelvic exenteration. Is there, are there any other issues that you think aren’t being covered that you’d like somebody to look into?
Sharon
As a professional side, I can’t comment on that because obviously not being medically minded myself, but as a patient there is one thing that I am hopefully going to be working with Planets to do and maybe Charlie as well if he if we could do something like this. Is to write something for patients before the operation so that they know what to expect from a patient’s point of view and not hearing all of the words that a doctor gives you that I came away thinking what did he mean by that? Or put it in layman terms, I think, and also after surgery meeting other people that I did in March when I went back in with this leakage that I had, the girl in the bed next to me who’s become a dear friend to me now, Claire. She is so lovely. But she was so confused with what she could do, what she couldn’t do, what she could eat, what she couldn’t eat. And the two of us sat there and spoke for hours. And we still do now on WhatsApp and that’s another thing I’d like to do is perhaps do a small pamphlet for people to take away with having just, you know, not medically, just from a patient’s point of view of this is what you can expect. Don’t lose faith. And you know them sort of things. A bit of reassurance to make people feel a bit more confident about going home because when I got home, I thought I’ve got nothing to read. I’ve got nobody to talk to. I didn’t know anybody that I could ask questions about. And I think if they could issue that pamphlet for somebody to take home, I think that would be a really good thing that’s come out of what my experience would be, yeah.
Sam
Yeah, I think that would be brilliant. That sounds like something could be incredibly useful to people. I mean, I’m guessing that you hadn’t heard of pelvic exenteration before you’d had it.
Sharon
No, I don’t. I haven’t even heard of. Well, I had heard of my cancer before because unfortunately my brother-in-law had exactly the same cancer. He had it of the throat. So I had heard of that, but yeah, absolutely. To be told what I had got and where it was and what it was going to be called once it was done was like, well, I’ve never, never heard of this before. Yeah, it was all very, very new to me.
Sam
So I think I have just one final question for both of you, which would be what one take away would you like people to know about the experiences of people who’ve had pelvic concentration or for Charlie, thing that you’d like to know, you’d like people to know about the research?
Charlie
I think the main thing that I, before starting my PhD, I haven’t spent a huge amount of time doing clinical research and I was really interested in doing what I’m doing because I do get to spend more time with patients so that, I know the lab-based research is really critical as well, but that was the appeal for me and it’s been amazing to meet people like Sharon, you know who, and I’m in in awe of people like her. You know, she’s something on this huge operation. And she’s had some complications, and yet still she’s wanting to help us, you know, help patients locally through her work with Planets. But also. You know she’s engaged with this process that I’m involved in where we’re trying to get agreement with surgeons and patients across the world and yet she’s recovering from this massive operation at the same time. And you know it’s motivates me to continue doing what I’m doing really.
Sam
What about you, Sharon? What one take away would you want people to have?
Sharon
To not give up faith. Believe that you can get out at the end of the horrible times because as much as it’s easy for somebody to sit there and say, oh, you’ll be fine in a couple of weeks’ time, you’re not. But you will get there and just take every day as it comes and conquer that day and then conquer the next day. Don’t try and run before you can walk and just keep your team together. But look after you, because without them, I wouldn’t be where I am today. Amazing bunch of people, but don’t ever be frightened to ask. I was always frightened to ask at the beginning and I kept quiet. But I learned over time. Open your mouth and ask the question and somebody will be there to answer it or somebody be there to help you. And if they don’t know, they’ll find somebody that can help you.
Sam
Brilliant words of wisdom to end on there. Thank you both so much for taking the time to talk to me.
Sharon
Thank you, Sam for your time and thank you, Charlie.
Charlie
Thank you both, it’s been great. Thank you.
Sam
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