Episode Transcript
[00:00:10] Speaker A: Welcome to ingest, the podcast series designed for primary care and brought to you by the Primary Care Society for Gastroenterology. My name is Charlie Andrews, a GP with an extended role in gastroenterology based near Bath. Ingest is an educational podcast, digital, designed for clinicians who are working on the front line in primary care or any other clinicians who are interested in expanding their knowledge in gastroenterology.
In this episode, I'm going to be speaking to David Bartlett about neuroendocrine cancer. We have a previous episode regarding neuroendocrine cancer recorded earlier in 2023 with Professor Pritchard, where we discuss Neuroendocrine 2 tumors and cancers and look at some of the management and diagnostic options. This episode is slightly different and David is someone who has experienced neuroendocrine cancer. He is also a gp, so he has a really unique perspective on his diagnosis and management and I'm really looking forward to hearing his story in just a moment. Before we head into the episode, can I just say, it's fantastic to have you listening. This is coming up to our 30th episode. So we've been running this podcast for the best part of three years now. It's been a really exciting journey. I've really enjoyed speaking to so many interesting people.
If you're enjoying the podcast, have a little listen to some of our previous episodes. We've got lots of really interesting speakers and interesting episodes on the back catalogue and do click subscribe so that whenever we bring out a new episode, you'll be notified. And please do think about getting in touch with us, letting us know about episodes that you think would be helpful. I always find it really helpful to hear from you and I can then help to shape some of the episodes so that we hit the information and the knowledge that you need in primary care or wherever you're working to try and enhance your learning and enjoyment of this topic. Thanks very much. So I'm joined by David Bartlett today. Delighted to have you on the podcast. David, would you like to introduce yourself?
[00:02:13] Speaker B: Yeah, thanks, Charlie. Yes, I'm David Bartlett. I'm a recently retired GP. I spent about 35 years in practice, retiring from practice in 2017, and then done a little bit of locum work since then and a fair bit of dermatology, which was one of my sub interests. So, yeah, that's. That's me. I'm now predominantly helping out with grandchildren and whatnot.
[00:02:39] Speaker A: Brilliant. And we're going to be talking about neuroendocrine cancer today.
We have in episode 22 of Ingest we, we have an episode with Mark Pritchard, who's talking about the detection management of neuroendocrine cancers. But this is a really unique opportunity because I think it's so important to hear the patient's voice and understand some of the challenges around making a diagnosis like this, but also around supporting people with this form of cancer. And David, I'm really interested to hear about your story because obviously you have had neuroendocrine cancer. You're also previously been working as a gp, recently retired. So I think you've got a really unique insight and I'm really looking forward to exploring that with you. Do you want to take us back to the beginning and talk about your story and where it began?
[00:03:30] Speaker B: Sure. Well, I hesitate in a way. I think my beginning goes way back to the year 2001, and I can specify that because we'd gone to New York, we'd taken my parents for their 60th wedding anniversary and I recall walking through Central park and my dad was unimpressed. He said it was no different from Bedford park, our local park, the town where I live. And we had a meal in an Italian restaurant and within half an hour I was in absolute agony with abdominal pain. First time I'd ever experienced anything like it. So how old would I have been there? I would have been 54.
So severe abdominal pain, which took several hours to settle, and being a gp, schooled in the common things occur commonly, I assumed whatever it was, maybe an unusual intolerance that I hadn't experienced before, maybe a, you know, a gastroenteritis that was imminent, goodness knows. Anyway, eventually it settled.
I can't exactly remember the timescale, but suffice to say, over. Over a number of years. And I have to refresh my memory by looking at notes that I've made. Literally, over five or six years, I would have these intermittent bouts of severe abdominal pain. So it was beyond discomfort, it was severe. I'd often get an inkling of it with a sort of increase in bowel sounds.
And then I'd think, oh, crikey, I'm going to have a day or two of severe pain. Didn't really have much else really associated with it and still persisted in thinking, well, I was training, doing marathons every year pretty well, and myself, no weight loss, no other systemic symptoms, and I just assumed that it would remain one of the many.
I know there are different expressions now for medically unexplained symptoms or persisting physical symptoms. I happily Put myself in one of those categories.
[00:05:32] Speaker A: Can I ask, David, just before you go on, did you seek any help around that time? Did you see anyone about this pain?
[00:05:38] Speaker B: I didn't for about five or six years. And after that time I thought I'd given it enough time to settle. It sounds ridiculous, really. I sort of blame my. I blame my parents in a way, Charlie, because my dad was a sort of stoic, you know, D Day veteran, you know, took everything in his stride. My mother was a. Doesn't want to trouble anybody. And I'm a sort of lethal combination of the two of them, really. A sort of little bit of stoicism, little bit of not wanting to bother anybody and a little bit of medical knowledge of common things occur commonly. And I'm basically well. And if, you know, whatever's happening to me doesn't appear to be deteriorating, it's just not going away.
But, yes, I did at that point then get an opinion eventually with a gastroenterologist. And I think at that time I had ultrasound scans and I was told that I was a typical patient with irritable bowel syndrome.
I didn't think I was, actually, but I accepted the diagnosis and so things went on. And I'm just assuming, yes, I've got irritable bowel syndrome, although virtually no effect on my bowels at all. I had one episode, literally one episode where just out of the blue I had really profound diarrhea, but that was just one episode.
So a couple years later, I was kneeling by the bed in agony when my youngest daughter got home, who was also a recently qualified doctor, and said, dad, whatever's going on with you, this isn't irritable bowel. So she carted me along to the local district general hospital.
They kindly gave me some intravenous opiates. I settled down overnight and I was told, yeah, that was a nasty bout of ibs, wasn't it? And maybe we'll do a CT scan at some point now that at some point never happened. They forgot to do the scan.
And so things went on for another year and I decided to ask for a second opinion with another gastroenterologist, so was referred to tertiary centre, saw a very experienced gastroenterologist, very kindly saw me one Saturday morning out of his sort of normal clinic hours, who happily pronounced me fundamentally well and with irritable bowel syndrome with no further investigations.
Another year went past, another severe bout of abdominal pain. Again, went to my local district general hospital, saw a recently qualified doctor who obviously thought I was a doctor on the lookout for strong painkillers and kindly gave me some intravenous paracetamol, which sort of helped a little bit.
And if I have to say, I just discharged myself. I thought, this is crazy. And it really wasn't for another three years, so by which time we're talking of 15 years.
Fifteen years after my first bout that I. Oh, I should say, I do beg your pardon, I had, in the interim, had a CT scan and that had been reported as normal. I can't exactly remember which year it was, but suffice to say, by 2016, I thought, I'm going to have to get a third opinion. And as a gp, I was never particularly keen on arranging third opinions for patients. I thought, if we're not careful, we're going to have fourth and fifth and sixth and seventh opinions.
But I thought I would. And I went to see a completely different, different tertiary center and he said, well, let me re. Look at. Or let me get my colleagues to look at your scans again.
And two weeks later he got back to me, said, yep, you've got a small bowel, you've got a mass in the mesentery. It was there in the scan that you had three or four years ago, and the local radiologists hadn't seen it, So I was diagnosed at the end of 2016. In fact, I was formally diagnosed the very last day in practice, February 28, 2017, when I retired from my practice after I'd had other scans and blood tests and whatnot. So, yeah, so I was diagnosed then. And. Do you want me to pause there, Charlie?
[00:10:16] Speaker A: Well, it's. It's. It's really, you know, listening to it, it's so difficult to listen to. And so 15 years. So you were 54 when you first noticed the symptoms? Yes, multiple opinions, diagnosed with ibs.
And it sounds like you were quite tenacious, actually, really, about sort of getting.
[00:10:38] Speaker B: Well, it's. Yes, in some ways I think I was. In some ways I think I was. I mean, there'd be intervals of two or three years, but I think.
I think one of the things. The pain varied in intensity, although it was always high, but it also varied in the length of time that it lasted for. And clearly, in retrospect, I was getting subacute small bowel obstruction, so sometimes it would last 12 hours, sometimes it would last seven days, and it would disappear for anything from seven days to 28 days to. You know, it was so variable. And of course, endlessly, my wife and I, we would say, well, I wonder if it was that particular Food.
I can remember trying all sorts of exclusion diets and it was just completely random. And when it occurred, I mean, the proverbial stress always crops up in any conversation about undiagnosed physical illness. And as far as I can tell myself, I'm not a particularly anxious person.
It was obviously stressful, being in pain, and I think in retrospect, again, it was the actual severity of the pain that should have alerted me. And not least, having actually listened to your recent podcast on ibs, the fact that it was a solitary symptom, it wasn't associated with alteration of bowel habit, it was a solitary symptom.
So, yeah.
[00:12:09] Speaker A: So was there any vomiting? Because sometimes a small bowel obstruction we get vomiting. Or were there any other red flags? It sounds like there weren't any other red flags.
[00:12:18] Speaker B: Yeah, no, that. And again, to be fair to everybody that saw me, and indeed to myself, thinking about it, there was no nausea, no vomiting, minimal change in bowel habit. A year before I was diagnosed, one of my other daughter said, dad, your. Your hands are going red and your face is going red. And I, you know, physiologically we do have these flares, you know, that's not, not unusual. You see them in the clinic quite often, the dermatology clinic, where in conversation with somebody they will go red because of their, you know, heightened autonomic response, if you like. But yeah, in retrospect, there were these carcinoid syndrome type symptoms occurring, which I have to say I, although I like to think of myself as a fairly well informed gp, I've always been a keen advocate of lifelong learning and in retrospect, didn't help the fact that I studied medically unexplained symptoms and I was very interested in it, so I sort of put myself in that, in that category. And yet I hadn't really heard of neuroendocrine tumor. I was aware of carcinoid, carcinoid as a word from medical school days, but sort of left it in, in a little pocket somewhere, really.
[00:13:40] Speaker A: So I, yeah, it's very unusual, isn't it? And I mean, could you just tell us a bit more about carcinoid, because it sounds. You sort of describe some flushing there, I'm assuming, and in retrospect wondering if that could have been related. Could you tell us a bit more about carcinoid for those who might not be fully aware?
[00:13:56] Speaker B: Yes, carcinoid is even within neuroendocrine tumors. Carcinoid syndrome is relatively rare. I think Martin Kaplan from the Royal Free would say in about 10% of patients with small bowel neuroendocrine tumors. So, you know, active peptides, hormones that are being secreted that will produce these often vasal symptoms. So flushing, some people would get sudden profuse diarrhea. And maybe that did explain that one episode. I had sometimes breathing difficulties, occasionally skin rashes. So a sort of mix of systemic symptoms which isn't common even with enduroendocrine tumour. But certainly you would hope again, in retrospect, some. And I could argue that I should have realized myself, you know, abdominal pain and what turned out to be carcinoid syndrome. But it wasn't on my radar. And if you know the old adage, either if you don't know about something or if you don't look for it. And I suffered from both of those. And my story about not looking for something is doing the six week baby check once on a baby, pronouncing this baby beautiful and perfectly formed, as one does whenever you do a six week check.
After which the mother said, is he meant to have six fingers? And I hadn't noticed the six fingers in my haste for normality.
And I guess in general practice that's one of the great temptations. We see a lot of patients who are fundamentally well with symptoms and one wants to say, you're fundamentally well or whatever language we want to use. Unfortunately, the patient will often go away and say, the doctor told me there's nothing wrong with me. Of course, that's a completely different way of looking at it. There is something wrong with you. You've got symptoms, but I didn't know about it and I wasn't looking for it even if I had known about it.
[00:15:53] Speaker A: And I think that's one of the reasons why I think it's really helpful doing episodes like this, actually, because it does fall off our radar, but it still needs to be there. And, you know, abdominal pain is extremely common and we need to be thinking about it and keeping it on our radar. So bringing us up to seven years ago. So I think we'd got to about 26, 2017. You've been laboring with symptoms for 15 years and multiple opinions. So what happened seven years ago after you were told that you had a small bowel tumor?
[00:16:26] Speaker B: Yes. A fairly standard treatment would be to go on monthly somatostatin analog injections, lanreotide, which I did. I then had the conversation with the experts that I was under on the value or otherwise of surgery.
And the consensus was that it wasn't absolutely necessary from a prognostic or even symptom point of view, but that there's a likelihood that symptomatically there would be some improvement. Now, again, I don't know whether to raise this, Charlie, but one aspect of having neuroendocrine tumor is that major surgery is potentially complicated by the risk of carcinoid crisis, you know, with associated hyper or hypotension and so on and so forth. And it does require a certain expertise during, before, during and after anesthetic.
And suffice to say I was put down for surgery in one of local teaching hospitals and had my pre anesthetic check and the anaesthetist that checked me, I have to say I found a little bit blase and as my mother would say, I'm not one to make a fuss, but I wanted to just gently say to him, I realized that there are potential complications having neuroendocrine tumour and anesthesia. And there was no engagement with my concerns. In fact, he was more concerned talking to the nurse about the fact that he hadn't been paid for doing some extra work recently. And that conversation was going on. And I realize this is a slight rabbit hole I'm going down here, Charlie, but in a way it is relevant because, okay, I had the pre op check and just the week before the surgery I thought, I just don't have confidence in this guy that's going to anesthetize me. And I called off the surgery, much to the annoyance of the whole surgery team. They had a bed in ITU booked for me and so on and so forth.
Fast forward another year, different teaching hospital, completely different experience, taken very seriously in a very wonderful understanding way. And so I had surgery a year, 18 months after I was diagnosed. I had a small bowel resection which has been wonderfully successful in terms of relieving my pain. Hardly any pain at all now. Just put it at the level of discomfort now, occasional discomfort.
A year on from that, so I should say when I was first diagnosed, metastatic disease. So liver metastases, small liver metastases, couple of small bone metastases in the lumbar spine, regular scans every three to six months. And there was progression in the liver metastases. And it was decided a year after, so 2019, 2020, for me to have this other treatment called PRRT, peptide receptor radioactive nucleotide therapy, so labeled lutetium, given as an infusion once every two months to lock onto the somatostatin receptors that are in the neuroendocrine cells. So that's four lots of treatment every Couple of months, every eight weeks.
Tolerated very well. Most people do tolerate it very well. And by and large that's kept things pretty stable for me. So I'm very grateful that I'm now seven years on. I physically feel well. There's some debate about my liver metastases. Some of them seem to be getting a little bit bigger, some get a little bit smaller. But the consensus is that it's reasonable to go on monitoring the situation. There are other options of therapy and I know we're not particularly going down the route of the detail of therapy for neuroendocrine, so that's where I'm at now. I'm basically well, thank God. I'm very grateful.
[00:20:43] Speaker A: That's great to hear, David. And there's so much that you've just said that I want to unpack, if that's okay. So I'm going to pull us back and just explore some of these in more detail. So when you were diagnosed somatostatin analogues, so what was your experience of them? Were there any issues with using them? Did they sort of work really quickly? How do they work? Do you know?
[00:21:06] Speaker B: Oh, well, all I know is that somatostatin receptors are expressed in neuroendocrine cells and somatostatin agonists will effectively block the secretion of serotonin and other vasoactive amines and so on. But yeah, I'm afraid I'm not the expert on that. Can I, can I just put in a plug, Charlie, for the course that I've been involved with that's been recorded by Inka, which is the International Neuroendocrine Cancer Alliance.
There's a free module available to all primary care doctors. Three lots of 20 minute videos where I and two other primary care colleagues interview experts on the presentation, diagnosis, management of neuroendocrine tumor. It's entirely free. We can, I presume you can put links on your podcast. I don't know we can put a link to it, but they're really quite excellent. And the third one of the three modules, only lasting 20 minutes, has got great detail on the specific treatment and the potential side effects and so on and so forth. So I want to put in a big plug for that. But suffice to say, often it will cause rather confusingly abdominal pain and bloating and diarrhea. So it can be a little bit difficult to know what's going on, certainly the first week or so because you tend to have it every four weeks. That's the recommendation. It's a Deep subcutaneous injection. My wife happens to be a nurse, so she administers it for me. Some people go to the local hospital, some would go to their local GP practice to have it done.
It's a whopping great needle, but it's not too bad.
And, yeah, by and large, it's tolerated very well. Symptoms like the bloating and diarrhea will often settle after the second, third or fourth month. But you can also get. And one thing I do get intermittently would be stools that are difficult to flush, and that's tricky because you've got to arrange your life around that kind of thing and that can be a little bit embarrassing. And for some people, for the week or so after, you can get a fair amount of urgency of the bowels. And just a practical note that my colleagues might not be aware of, and I only learned about this from a patient that had Crohn's disease who used to carry around with him a credit card that said, I've got a condition that requires me to use the toilet urgently and it's great to carry one of those. It just takes away that little bit of stress to think I'm going to be somewhere where I'm going to have difficulty. And those are the sort of things that mean a lot to patients. They really are. So, yeah, that's the somatostatin analog, Charlie.
[00:23:56] Speaker A: And that's something you continue to have.
[00:23:58] Speaker B: You pretty much continue to have. Surprise. I know that's an indefinite.
Yeah. As far as an indefinite, unless and until you're reaching a terminal stage, I suppose, at which point it's not proving of any benefit to you.
Yeah.
[00:24:16] Speaker A: And then the sort of. The infusions that you're having that we were talking about.
So they started later. And that was treating the more distant disease, is that right?
[00:24:27] Speaker B: Yes, that was largely for the metastatic disease.
Well, completely, as I understand it, for the metastatic disease, and is a sort of a slower of the progression. And thankfully, that seems to have been the case for me. Obviously, there are different speeds of progression for different patients and there's a measurement of mitotic index that you may be familiar with. The Ki67, I believe it's called, that will give some indication of how fast cells are replicating, which is a test that's done early on in the diagnosis and that will have some bearing on how fast your lesions will be occurring and growing. The infusion lasts about. I think it's about six hours.
You have to be in a sort of nuclear bunker while you're having it and use your own toilets. And for the next week or so, you pretty much should keep yourself to yourself and certainly not go near to, you know, pregnant friends and so on and so forth. You're very much in the hands of a multidisciplinary team, and that's one thing I'd want to encourage all patients to be under a multidisciplinary, preferably one of the specialist net cancer centres dotted throughout the uk.
[00:25:43] Speaker A: That's a really good point, because I think when I was talking to Mark Pritchard, we were talking about who should be involved in the care.
So who do you actually have? Who's supporting and coordinating your care?
[00:25:54] Speaker B: Yes, I'm under King's College Hospital, who provide excellent care for me. That's one of the centres of excellence. I think there's about five or six in England and one each in the devolved nations. There are other centres that wouldn't be classified as centres of excellence, although there would be centres of expertise, if you like, hesitate to say a slightly lower, not lower grade. It's not quite the right language, but I do think you were, you know, in these rare conditions, you want to have people that are seeing this condition pretty frequently and you want to have folk where there is the multidisciplinary team. I felt a situation about a year ago where my gastroenterologist advocated one treatment and the subsequent consultation with the oncologist suggested holding fire. And the conversation went through the multidisciplinary team and I didn't go on to the subsequent treatment. And I'm reassured to know that there's a conversation going on about me that's not just relying on one person. And I think these are the conditions where you don't want one doctor holding on to you, advising on every aspect of the treatment.
You want to be under a team.
[00:27:10] Speaker A: Yeah, sounds sensible. And in terms of surveillance, what sort of surveillance do you require now?
[00:27:18] Speaker B: Yeah, so it varies, but it's usually between three and six months and there's a sort of mix of CTs, PET CTs, gallium scans, MRIs, and I can't pretend to be an expert on the difference between these different scans, other than my understanding is some scans are more sensitive to actually pick up the lesions. That would tend to be the gallium scans. And some are more helpful in actually defining the size of the lesions and the more sensitive to different sizes. But that's where you're relying on absolute expertise. And indeed, in the light of my experience, radiologists that are used to seeing neuroendocrine tumours.
[00:28:03] Speaker A: So that's such an interesting story. You know, it's amazing to think that it took so long to get to that diagnosis, but it just shows how challenging it can be. Thank you so much for talking through all the different treatments and sort of clarifying carcinoid syndrome for us. It was really helpful. I'm hoping we could move now to think about your take homes from your experience, things that you've reflected on and thought, you know, this would be really useful for others to know and that might be around the diagnosis, but it might also be around what's been helpful for you as a patient.
What sort of things have actually been helpful for you to know about that our listeners can take home?
[00:28:44] Speaker B: Yeah, well, can I pick on something? Pick up on something I think Mark said, which I think is hugely important that. So I was, yeah, 50, whatever I said, I can't remember. 50 something.
And it was a new symptom for me. A new symptom, an isolated symptom. And I think by and large in primary care, new symptoms in patients in their 50s and 60s, whether it be abdominal pain, headache, unexplained weight loss, you pick whatever you like is more likely to prove to be something where there is a definite cause for it. Now, I think in a way that's one of my big take homes. I think I didn't help myself by being stoical.
I remember one of my partners actually seeing me in pain and actually giving me an injection for my pain. And I think that in itself should have been a trigger to think this has got to be pursued a little bit more.
I've had various thoughts about the practice of general practice and primary care. I wrote a little book about it when I retired about what's called the art of general practice, on how we can work well in general practice. And I think one of the challenges, particularly modern general practice, is the sheer speed of things.
The fact that we're now disseminating our patients to others that don't have the level of training that we have must have a less awareness of rare conditions. But I think it's so difficult. But somehow working in general practice we have to maintain a level of inquisitiveness and curiosity about our patients. And I think if we only ever think in terms of the common things occur commonly because so much of general practice now is managing long term conditions with guidelines and protocols, is that we're losing what I would call the art of general practice and the art of medicine. And of course taking a good history and again, just to pick up on your other podcast with Anton and irritable bowel syndrome, he emphasized. And I would want to re emphasize just stepping back as it was sitting back in your chair and thinking, I just need to ask a few more questions about this patient for a while in general practice, after about. I'd been a GP for five or 10 years, I became quite interested in homeopathy and did a fair bit of training in it actually.
And although I've lost contact with it and lost confidence in it over the years, one of the things it did teach me, if you know anything about homeopathy, is that there's an intense history taking that takes a very long time. Asking about the most apparently random things. You know, do you feel better at the weekend, do you feel better when there's a north wind or a south wind? You know, almost spooky questions. But it taught me the importance of a detailed history, listening to the patient. So I suppose picking up on your question, it's taken me back to the importance of taking a good history. And of course we live in a climate of lots of blood tests. And I think a lot of my colleagues now are saying, oh, so much of my time is spent looking at blood tests and so on. And I would want to say to them, think before you do the blood test, you need to do them for a start, have you taken a good history?
So I would want to re emphasize a good history.
I'd want to re emphasize new symptoms in a middle aged person.
Isolated symptoms on the one hand, but also someone that's had an isolated symptom for a while that suddenly gets another symptom. For example, in my case, the flushing probably should have been putting two things together probably should have been a trigger for me, but it wasn't. So I'm not particularly critical of my college because I literally didn't think about it myself. And the course that Inka has arranged is called Think Nens. You know, think unless you think about it, you, you won't diagnose it. But also the challenge of slowing down. And this is, it's almost impossible for my colleagues that are working in general practice now. But you know, and I know that if you, if you drive somewhere, you only notice a certain amount. If you cycle somewhere, you see a little bit more. If you walk somewhere. I walked from one superstore to another in Bedford recently and I went past the Second World War bunker that's been there since 1944. And I've lived in Bedford most of my life. I'D never seen it before. I told a friend who's a complete World War II nerd, he'd never seen it before. He'd only ever driven past it. So unless you slow down with this particular patient in front of you.
I think one of the things I used to say to my younger daughter, who is in general practice, she spent a day with me before I retired to say, how do you get through your clinic on time?
And the way I did get through is that I spent time with the patients that needed the time, but with the patient that didn't and didn't expect the time, who had a relatively simple request. I didn't prolong the consultation just because it's there. So if I only spent three minutes with one person, I could spend 17 to 20 with another. And I don't know whether that that's helpful, but that. That for me would be. Would be something to think about with this person that either keeps coming back or there's just something that's niggling away at the back of your brain. Because I don't think we can forget about intuition in general practice. And I think you lose intuition if you're just focused on protocols and filling in templates. I think that's one of the dangers of a sort of digital nhs, to coin a Keir Starmer phrase. I think there's a lot to be said for analog.
[00:35:00] Speaker A: That's brilliant and that's such a really interesting discussion around general practice in general. So thank you for that. We should pop your book on, because I think that'd be really interesting to have on there as well. So we should pop it onto the show notes, because I think it is about slowing down. And there are lots of really helpful messages here about new symptoms in someone over the age of 50, particularly that IBS diagnosis. You've got to be wary of that in someone over the age of 50, really. And that's a really good message to pick up. Finally, was there anything that you found has been helpful for supporting people with neuroendocrine cancer?
[00:35:42] Speaker B: Yeah, I think one would have to say fairly to our colleagues that it's impossible to know a lot about rare conditions, but thankfully, just about all significant. All rare conditions have probably got their support groups. Neuroendocrine Cancer UK is an absolutely, unbelievably good patient support organization.
Well, run by Kathleen Bouvier and a team of trustees. I'm one of the trustees with another GP colleague, with a gastroenterology colleague. They provide a telephone helpline. They've got really excellent patient information material, excellent handbook, as I say, as will most other rare conditions. And I would always want to point patients in the direction of support. It pretty much helps most, but not everybody, because not everybody wants to. And I've had an interesting conversation with a couple of other GP colleagues who've also got the diagnosis of neuroendocrine tumor.
Two of them want to read most of the research and the data and so on. I've taken a sort of middle path, slightly putting myself in the hands of experts. So everybody's slightly different. Not everybody wants to know the minutiae of their prognosis.
Some do, some don't, but certainly, yeah, as a resource, Neuroendocrine Cancer UK is a truly magnificent resource and we can put a link to that, hopefully. Charlie?
[00:37:15] Speaker A: Yep. Yeah, we could do that. And is that free for patients to join?
[00:37:20] Speaker B: Absolutely, absolutely. And there are these sort of local, what they call natter groups, so they could be localized, smaller groups, but as I say, the telephone help line. One particular issue that was that I did use, it was on the question of health insurance and travel, because that then suddenly you've got a diagnosis that's going to impact your medical insurance. And again, they were able to advise two or three companies that take a special interest in conditions that might affect your policy and your premium, and that was very helpful for me.
Another aspect of travel is, you know, the risk of carcinoid crisis. It's rare, but you'd want to know from your experts how likely that is and whether there's some way you can reduce the risk of that and so on. But, yeah, insurance is an issue. Again, I've had conversations with colleagues, some of whom take a chance and travel anyway.
Although I'm a moderate risk taker in life, I think that's pretty bold.
So, yeah, that's a practical issue that is important to raise with patients. And you've probably had patients, Charlie. I certainly have. I can remember vividly one chap ringing me from America to say that, you know, I've had an infarct and you will be getting a form to complete. And can you just ignore the fact that I had an impact, an infarct five years ago, you know, can you leave it off? And clearly you can't, you know, so it's always better just to be completely upfront about these things and declare your problem. And if you can afford it, you can afford it, and if you can't.
[00:39:07] Speaker A: Then, yeah, I think it's some of these things that are actually just practical advice that People with conditions just need. And actually it sounds like Neuroendocrine UK have support for that, which is really good. So we will put it on our blurb.
[00:39:23] Speaker B: Well, so that, yeah, please do find.
[00:39:25] Speaker A: Post people to that resource because it sounds great. Well, David, look, we're coming to the end now.
Thank you so much for telling us your story. It's really powerful and there's so many really important messages there that I'm going to take home and think about in my clinical practice. And it's great to hear that you're well at the moment. You know, the treatments are working well for you and just, just thank you so much for coming and talking to us. It really is. It's been great.
[00:39:53] Speaker B: That's okay, Charlie. And I should say that my story is a little bit unusual. The average delay is about six or seven years, even the average delay. So I'm, I'm at one end of the spectrum, but obviously, as with most other but not all medical conditions, the sooner you diagnose it, the better the prognosis is going to be. So there's a real incentive, I think, for us to do our best to facilitate that. And as Mark pointed out on his podcast, CT is the best diagnostic tool. Blood tests are not that useful at the primary care level.
[00:40:28] Speaker A: Really brilliant. And on that note, thank you very much, David. Thank you very much to our audience for listening.
[00:40:35] Speaker B: Thanks, Charlie.
[00:40:37] Speaker A: Wow. Well, thank you so much to David for sharing his story with us. It's so brave and insightful to share that information with us that it's just, there's just so much that we can take from that about the experience of being a patient, but also learning points around neuroendocrine cancer. David has such a unique perspective on his experience that I think it's a really important episode for any of us to listen to, really. It's so hard for me to pick out the key learning points that I've taken from this episode. There are learning points that span general practice, gastroenterology, oncology and all sorts. So there's lots of really helpful and fascinating things within this episode. You know, one of the things that we did, you know, focus on in the first half was really around that diagnosis. And, you know, as David had reflected persistent new isolated symptoms in Those in their 50s and 60s, there's more likely that there's going to be an organic cause. And so we should be more suspicious of these symptoms in this age bracket. And it should prompt a more in depth analysis and investigation of those symptoms.
It's also really helpful to refresh carcinoid syndrome, which again, I haven't come across or haven't really had much experience of since medical school. But you know, understanding that not that many patients will experience carcinoid symptoms, I.e. active circulating peptides causing things like flushing, etc. But some will so 1 in 10 with neuroendocrine cancer.
So we just need to keep it on the radar, but accept that it's not going to always be present and this unusual, rare diagnosis won't stare us in the face. We do need to think about it and explore and be inquisitive about patient symptoms, particularly in that slightly older age group with an isolated single symptom that just doesn't quite seem to fit classic pattern of functional disease.
On that note, thank you so much for listening. I hope you've enjoyed the episode. As I mentioned at the beginning, click subscribe and we'll update you whenever we bring out a new episode. Send us any feedback, click Review. All of it is really helpful for us to keep the podcast going and to make it as useful for you as we possibly can. Thank you very much.
