I did a talk on the Wisdom app explaining what Lynch syndrome is and my personal story. You can listen to it here, or read the transcript below.
Hi there, wisdomers!
I’ve just been a guest on someone podcast that we’ve just recorded, so I wanted to carry on talking really and spend a little bit of time explaining Lynch syndrome.
What is Lynch syndrome? Why am I here talking to you about it? Why do I spend a lot of time thinking about it and writing about it?
The podcast that I’ve just been on is called Alive and kicking with a guy lovely guy called Dave who invited me on his podcast to talk about my Lynch syndrome story, which is something that I spend quite a lot of time doing these days and I really like talking about Lynch syndrome, explaining what it is.
Lynch syndrome is a genetic condition that makes people more likely to get different types of cancer. So the types of cancer that makes you more susceptible for depends on which kind of type of Lynch syndrome it is.
So, you have these genes. I’m not going to explain it perfectly ’cause I’m not a doctor or a scientist and to be honest, I don’t spend a lot of time looking up an explanation of my illness because that’s just a black hole of doom, if you start Googling medical stuff. But basically you have these genes in your body, that sort of if cells start to go wrong then these genes can stop them developing into the cancer and and when you have Lynch syndrome, those genes are broken so they –
I see them as tiny bounces in our bodies.
I just have a picture of these little, a cartoon.
Little characters wearing black with their arms folded looking angry, guarding your body’s cells, and when things start to go wrong in the cells, these genes will jump in and sort it out and stop things from going bad and causing cancer to occur.
But when one of those genes is broken, then that doesn’t necessarily happen, so it makes you more likely to develop cancer that you otherwise might not have developed if you didn’t have Lynch syndrome.
So that’s the potted summary of what it is, so I’ll tell you my personal Lynch syndrome story.
In 2010 I was 22 years old. I’d finished university the previous summer, so I was working part time in a supermarket and looking for my first proper job.
But in 2010 I had to go to hospital – I’m stumbling a bit because I’m trying to spare you the completely gory details of how I found it – and I ended up in A&E.
Anyway, after some tests during that year, I found out that I had bowel cancer.
I think they found 18 polyps in my bowel during the colonoscopy. I met my consultant, who retired last year, unfortunately, but he’d been my consultant for 10 years and he was brilliant.
He said that I needed to have my bowel removed because there was so many polyps and a couple of them were cancerous so I had to have my bowel removed and I was going to have a colostomy bag at the age of 22.
I barely knew what a colostomy bag was. I’d certainly never heard of a stoma before, so the stoma is the little bit of intestine that sticks out of your belly and waste comes from that and goes into the colostomy bag.
And so they said I would have my bowel removed. I would have this colostomy bag. I had the bag for five months.
And then they did a reversal, which to me is one of the things that tells me how amazing modern medicine is.
It’s just incredible. So instead of having the colostomy bag, it was basically like plumbing me back up together again, so they took part of my small intestine and made that into a large intestine and eventually you don’t need to have a colostomy bag anymore. They plumb everything back up inside and this little part of your small intestine now acts as a large intestine and it’s called internal pouch or just about to a J pouch, ’cause sometimes it’s in the shape of a J. I think J pouch is more of a term used in the US. I’m not sure if it’s really used much here in the UK, but you know.
I’m part of the online cancer community, so I hear a lot of things that are used in the USA that aren’t necessarily the same terminology used in the UK, but I digress.
So yeah, so they kind of plumb you back together.
And you have the J pouch and it’s really clever because it learns to absorb liquid in the way that your large intestine is supposed to do so this small part of your small intestine that’s now your pouch is learning to absorb waste as a large intestine normally would.
So in January 2011 I had my reversal and then in September 2011 my parents and I went to a genetic counsellor because the medical team wanted to know why this happened, why had I, a 22 year old, gotten bowel cancer. At that age, you know, with all of these polyps. I should say, polyps are little sort of growths like warts, and sometimes they’re benign. And sometimes they’re cancerous.
The genetic counsellor is a person who looks at your your history and think could there be a genetic reason behind whatever happened to you. Then you can go for testing to find out if you have a genetic condition or why this thing has happened. They said it could be a couple of different things and one of the options that it could have been was Lynch syndrome. So they explained how the syndrome is a genetic condition that makes people more likely to get different types of cancer. So obviously, bowel cancer, because that’s what I had and also some gynaecological cancers and I guess also for some types of LS, brain cancer, which is what my brother died of when he was 16 years old. I was one year old, so I didn’t know him and we didn’t know about Lynch syndrome until I was diagnosed with it so back when my brother died, we wouldn’t have heard of Lynch syndrome at all, but it’s kind of the assumption now that that was the cause of his brain tumour. So yeah, LS causes a few different types of cancer, so we found out that I had it and we found out that both of my parents had it.
So, you have a pair of these genes and my parents had a good gene each and a bad gene each, so me and also my sister and my brother, we could have inherited a good gene from Mum and a good gene from Dad and not had Lynch syndrome.
And that’s what happened with my sister. Or we could have inherited a good gene from Mum and a bad gene from Dad or a bad gene from Mum and a good deal from Dad, which is then, you know you have LS.
What I did is I inherited a bad gene from Mum and a bad Gene from Dad. So I have a different type of Lynch syndrome called CMMRD and I don’t know too much about this because the thought of it just terrify is me. You know, because if having one bad gene makes you more likely to get different types of cancer, what about when you have two bad genes?
What are the implications of that? Does it double your chances? And I don’t know. I don’t look these things up because I have enough anxiety without going and looking for more, so I can’t tell you.
All I know is that I have it, and I’ve had cancer three times.
So that’s what Lynch syndrome is, and it’s not actually that rare – talking not about my CMMRD, but talking about Lynch syndrome in general – it’s not actually that rare for people to have it. What is rare is for people to know that they have it.
So if there is a history of bowel cancer running through the family or other cancers, then that could be an indicator of having Lynch syndrome in the family.
And the problem as well with Lynch syndrome is, In the UK – again, I I don’t sort of look into this too much, so I don’t know on the current statistics – but we haven’t really had much standardised testing programmes so it’s a little bit of a postcode lottery as to when and why your medical team might decide to send you for testing to see if you have Lynch syndrome.
So the different reasons why people might be sent for Lynch syndrome testing why it might differ between hospitals.
So that is a problem. It’s a problem that people don’t know when they have it, because if you know you have it then you can reduce your risk and I know it’s really scary to be tested and find out if you have this this thing because of the implications of what it means.
If they say yes, you have it, then depending on your medical history and your family history and whatever else, it may be that you’re sent for regular colonoscopies or other screening and I know it’s a scary thing.
But I’m going to tell you the second part of my story now.
Which to me says that if I didn’t know that I had Lynch syndrome, these other two cancers wouldn’t have been discovered, or at least wouldn’t have been discovered as early as they were, and I might not be talking to you here today.
So after we found out that I had Lynch syndrome in September 2011, I was going for screening after having had cancer anyway, but Lynch Syndrome just guarantees that those tests are something that that’s here to stay.
So I’ve had a flexible sigmoidoscopy, which is like a colonoscopy except it’s for your pouch. It doesn’t go in as far as a colonoscopy does. Is really quick. It’s about 10 minutes, but it’s still somebody shoving a camera up your bum.
So there’s that, which I have every year or I think they’ve changed the guidance recently to every two years, but for a long time I had that every year and I also have a gastroscopy every year now.
And then after my operation I had CT scans as well, which I think is just related to the operation because I did go a few years after my first operation, where I I had a CT scan for a couple of years and then after that they kind of trailed off.
So yeah, so there’s this different screening that you can have, so I’ve been having a flexi sig and gastroscopy every year and some CT scans.
So in 2018 then I found out that I had duodenal cancer. The duodenum is part of the small intestine.
And I also found out that I had uterine or women cancer. I found out about these within two days of each other, which was absolutely horrific.
So I’d had my annual gastroscopy. And I had an MRI because of an abscess that kept coming back up.
Then I went off on holiday to Florida for two weeks and I came back to loads of missed calls from the hospital. On the Thursday I went to see my consultant, the surgeon who did my previous bowel operations, who said that I had duodenal cancer and he was going to refer me to another hospital, to a GI consultant. And then the next day I went to the gynaecologist to talk about what I thought was going to be talking about this abscess that I’d had the MRI for, but it turned out that the MRI picked up some abnormalities in the lining of the womb.
I can’t remember if they said it at this point or if they said it later after my hysteroscopy, but at some point they said it’s definitely precancerous, and it may be actual early stage cancer.
Talk about a lot to deal with. The duodenal cancer didn’t really come as much of a surprise because I’ve had bowel cancer before and I knew that it was going to be bad news because my consultant’s secretary called me on the Tuesday and said, can you meet with him on the Thursday, but he’s not in normal clinic hours, so you’ll have to go and find him on the ward.
So that obviously sounded urgent and you know, not normal, so I I knew then that that was going to be bad news. But to then go to the appointment with the gynaecologist expecting to talk about an abscess and to actually be told you might have womb cancer, the next day.
Long story short, there was these two teams dealing with these two different cancers and thinking, oh gosh, what on earth are we going to do with this person and how to solve both of these things that we found at the same time. So the plan was for me to have a hysterectomy, which I had in September 2018.
I was referred to a fertility specialist, but we decided not to freeze any eggs because to stimulate the ovaries could also stimulate the lining of the womb, which could cause the cancer to grow.
And my partner and I just decided we don’t want to take any chances and just wanted to keep me as safe as possible.
Which means that we’re now unable to have biological children because we didn’t have any before.
But that’s a whole other trauma to talk about. And then for the duodenal cancer they were going to do a whipple surgery and whipple surgery is where they remove the duodenum, the head of the pancreas, the bile duct, the gallbladder.
I think that’s it.
Yeah, that was a massive operation. I think it’s about 10 hours and the first two hours was just them dealing with adhesions. You know when organs get stuck together?
I was in the High Dependency Unit for a couple of days and then moved on to the ward for about a week.
So yeah, that was a that was a really big operation in November 2018. It’s normally an operation that people have when they have pancreatic cancer, because of course it’s removing part of the pancreas. So it’s quite common for pancreatic cancer.
I was then offered chemo, but I declined because they didn’t have any – this is for the duodenal cancer – they didn’t have any evidence that chemo would particularly work.
And I didn’t want to spend the next, you know, however, many months being feeling sick because you know it was already such a massive recovery from the Whipple, it was just horrendous I. I think for the hysterectomy and the Whipple surgery I had five months off work in total.
Luckily my employer is amazing and they paid me in full for the whole time, so that was just one thing less to worry about. They’re fantastic.
But the thing is that when I went for the MRI and they found the abnormalities in the womb, they referred me to a gynaecologist who gave me an exam and he said, oh it’s probably fine, not really anything that he thought was to worry about. And then he wrote to me afterwards and said “actually, I’ve just researched Lynch syndrome”, because I guess that he didn’t know much about it before – a lot of medical practitioners don’t know a lot about Lynch syndrome. But he said, “oh, I’ve looked up Lynch syndrome and I can see that Lynch syndrome makes you more likely to get gynaecological cancer. So I’m going to send you for a hysteroscopy.”
It’s the best thing that he could have done, and I’m obviously glad now that he did it. But when you’ve spent so much time in the medical world, the last thing that I wanted was more exams, more anxiety, more, oh maybe this is, you know, something really bad. It’s so anxiety inducing.
But if he hadn’t have done that and I’d have just gone away…
And this was my fault, because I knew that there was a risk with gynaecological cancer with Lynch syndrome.
But I guess I was too scared to want to think about it.
But for that guy to come back and say oh actually looking at, you know, this thing that you have, we’re going to have a further investigation and then they found that it was early stage cancer. If he hadn’t have done that…
Would it now be much later cancer? Or would I not be here? And the same with the duodenal cancer, because that was picked up during a routine gastroscopy that I had because we knew that I had Lynch syndrome.
And that’s why it’s just so important, to know whether or not you have it.
Obviously if you’re perfectly healthy and there’s no history of those types of cancer in your family, and you don’t have any symptoms or any medical worries or anything, then there’s no reason to think that you would have it. But if somebody has a history of bowel cancer in the family or has had bowel cancer or these other cancers themselves, the medical your medical team should be sending you to check if you have Lynch syndrome because it’s far better to know that you have it than to be unaware, and to have it. And I don’t say that lightly because I know it’s really scary to have to deal with medical stuff.
But knowledge is absolutely life saving and I hope my story has demonstrated that ’cause who knows where I would be if it wasn’t for those diligent doctors doing their extra checks and making sure that I’m being seen to. Just thinking about the pandemic, my scans were pushed back a few months and in a way, it was really nice during the pandemic to not have to worry, to not have to go for my capsule endoscopy. That’s where you swallow a tiny camera and it takes pictures of all of your insides, and then you poop it out down the toilet and you wear a recording device and you take it back to the hospital and the hospital looks all the pictures that the camera you swallowed has taken.
Which is really amazing technology.
But because of my Whipple surgery, my plumbing is a bit different, so they have to place the camera by gastroscopy. So I still have to have a camera down my throat to place the capsule camera that people should be able to swallow because one year I swallowed the camera and it just spun around in one place for like 4 hours.
And that was really scary. Just sort of worrying about, you know, has it come out yet? Is it out or I’m gonna have to go to the hospital to get an X ray to see if it had come out, which I I did and it had come. And if it gets stuck, I think it’s quite rare but there’s a risk of it getting stuck and then they have to do an operation to get it out.
But yeah, it’s like worst case stuff. I’m sorry I’m just being sort of, hopefully not scary now or anything. Most of the time, things go really smoothly, but when you have to deal with scans and things so much, which you do with Lynch syndrome, it’s just that added anxiety, you know – what if this goes wrong? Oh, it’s not likely. Yeah, but what if?
The main thing is, knowledge really is power and who knows where I would be if we didn’t know what Lynch syndrome is? Because so I think that everybody should know what Lynch syndrome is.
Just to reiterate again, for people who have joined recently, it’s a genetic condition that makes people more likely to get certain types of cancers, bowel cancer being the main one, but also gynaecological cancers. Also sometimes brain cancers, and you might have heard of something else called BRCA. And that’s a similar thing. It’s a genetic condition that makes people more predisposed to getting breast cancer so, so that’s quite a similar thing as well that people might have heard of. But yeah, a lot of people don’t know that they have Lynch syndrome and there’s the problem of people not knowing and testing not being consistent around the country, so some people may or may not get tested for it, depending on where they are and then also medical practitioners not knowing enough about it.
And then the whole other thing to think about is what I’ve kind of touched on a couple of minutes ago, which is the emotional impact of Lynch syndrome and any cancer survivorship.
I think particularly when you have these genes that make you more predisposed to getting cancer, then you know that you’re going to be having these scans every year. Whatever form that may take for your situation, and I’m trying to speak generally because everybody experience is so different.
But yeah, it’s really something that’s not really talked about, the emotional impact of cancer survivorship and I wrote a little piece a while ago as part of my PhD work, which basically said that cancer survivors don’t exist.
And I’m thinking there, especially in the world of TV. I’m thinking about soap operas. I’m thinking about things like Coronation Street, which I watch religiously. Say somebody in a soap gets cancer, they either get it sorted and they’re fine, and it’s never really mentioned again for the rest of that character’s existence on the soap. Or they get it, they have some treatment, and either it gets better for a bit or it just doesn’t work and they die. So characters either die in soaps of their cancer or they live long enough for themselves and everybody to completely forget about it. So cancer survivors don’t exist for this particular type of TV especially.
Because characters aren’t portrayed as cancer survivors. And I know that there is more to a person than being a cancer survivor. Of course you don’t just want to portray somebody as the person who had cancer and nothing else. But by the same point, I think that TV does a disservice to people if it never lifts the lid on the experiences of people with cancer. Or who have had cancer afterwards. Whether that’s anxiety, fear of recurrence, or PTSD symptoms, nightmares. You know, feeling just just sad and wallowing about what’s happened before, and that’s not you know, necessarily something that happens immediately. That can take a while to kick in and then a couple of years down the line it might hit you or you might still be dealing with it and so many people say that a lot of the emotional effects of cancer survivorship don’t come when you’re going through treatment or waiting for your surgery or recovering from surgery, but it’s afterwards. You know, when it’s all over. And when you feel like everybody around you has forgotten and that’s when it can really hit people and PTSD after cancer is absolutely a thing.
So this is just something that you know people don’t really talk about that much and especially on television and I think I would just like to see a character where you can tell by the lens that they look through life that their experience has been different to the people around them.
You know where some people around their birthdays may lament having another birthday. Getting old. Oh gosh, I’m 34 now, I just recently had my 34th birthday. You wouldn’t catch me saying that because I’d see birthdays as a privilege. Getting old is a privilege. I would be delighted if I could get to old age with my partner if I could avoid Lynch syndrome induced cancer for that long.
‘Cause who knows if I might get another one, but you know, if if I can avoid it and get to that age, then that that would be such a privilege, absolutely, to get older and it is those kinds of frames of minds and perspectives that differ with everybody and not just cancer survivors, but we all have different life experiences.
It’s just representing cancer survivors in that way and remembering “this character might not look at this in a particular way because…”
So that’s my little tangent about how cancer survivors don’t exist in the world of TV because either they get cancer and they die, or they get cancer, it goes away, everybody forgets it ever happened, and then they just end up just being like any other character.
Well, actually, the lived experience can be very different, especially when you’re going to scans every year and all that kind of thing.
So I see I have 26 listeners now which is really cool. So sorry to be repetitive, but I’m just going to reiterate one more time what Lynch syndrome is, so it’s a genetic condition that makes people more predisposed to having different types of cancer. Especially bowel cancer, but also gynaecological cancers, brain cancers and probably some others that I’m not quite aware of because there’s a few different types of genes involved in Lynch syndrome. It’s inherited, so your parents have two genes, and then if one of them has Lynch syndrome, then you have a risk of having it yourself. Lots of people don’t know that they have it.
It’s really important to have this knowledge.
If anybody does have Lynch syndrome or has cancer, have a look online at the cancer community and the Lynch syndrome community. I started this talk by saying that I’ve just finished recording podcast with Dave over at Alive and Kicking. He does a podcast on Lynch syndrome and I was saying to him after we’ve finished recording, thank you for your contribution to this community because it helps so much to know that there are other people out there in similar situations.
The podcast, I think is going to be out in a few weeks. I will put it on my social media when it does come out.
My Twitter is @writersamr. And also if you’ve if you’ve been interested in hearing about my Lynch syndrome story – so from my diagnosis at the age of 22 of bowel cancer and then Lynch syndrome and then also my diagnosis of duodenal cancer and womb cancer in 2018 and also the fertility issues that brought up as well – I did write my memoir.
I released it earlier this year, so nearly a year ago now I released my memoir, which is called Gut Feelings: Coping With Cancer and Living With Lynch Syndrome. And it’s on Amazon. So really, when I wrote this book, I just wanted to be able to reach people who have or have had cancer or caregivers, or who knows anybody who has had cancer and just wants to understand the experience better.
So the first part of the book is talking about my own experiences and then the second part is more of a commentary on the emotional effects of cancer survivorship. What I just really wanted to do was firstly, write a book that people with Lynch syndrome could relate to, because there isn’t much out there about Lynch syndrome at all apart from books that have been written for medical practitioners.
But also, I really wanted to highlight the emotional effects of cancer survivorship because it’s so much more than “okay you’ve had surgery, we’ve got it out, and now you’re done”. Or you’ve had chemo, you’ve rung the bell, treatment’s over, go back to your life.
Because as well, it doesn’t particularly affect me, but I know people have long lasting physical effects, from chemo as well, and things like chemo brain, you know, brain fog and trouble with memory and all sorts of things which I don’t really cover in the book because I didn’t have chemo so I haven’t experienced it.
But yeah, just to draw attention to the fact that if you do have a friend or family member who has had cancer, they may still feel some sort of way about that. So it’s really good to check in with people and on a personal note, I’m just so grateful if anybody comes to me and says “how are you doing?” You know, in the context of previously emotional problems or feelings I’ve had around cancer, or if I’ve got a scan that’s coming up or if I’m waiting for results, which I currently am.
You know, it’s just really. It just feels really good when people approach me with that context in in mind and when they know, I think it’s really mainly only my best friends that do it.
But you know, if they when they check in with me they always do it through the lens of Oh yeah, you’re a cancer survivor, I know that that’s a huge thing that has shaped your life and I want to make sure that you know you’re still okay.
If anybody wants to be a guest, I’ll wrap up soon, but if anybody wants to come on and ask any questions about Lynch syndrome or cancer or the book or anything.
So just once again, main points of this talk. Lynch syndrome is a genetic condition that makes people more likely to get different types of cancer including bowel or colon cancer, gynaecological cancers, brain cancer and some others, depending on what type you have. It’s inherited. Lots of people don’t know that they have it, but when you do have it, I personally think it’s really positive to know that you have it because then you get the screening that you need to make sure that you stay okay, and if they find anything, it’s more likely that they’ve you know found it early and you can deal with it, and I’ve been so lucky that all three of my cancers have been detected early and also if my medical teams hadn’t known that I had Lynch syndrome, two of those cancers wouldn’t have been caught at all, or you know, certainly not as as early as they did. Or maybe I would have started developing symptoms, but by then it could be later stage, who knows.
Knowledge really is power in terms of of Lynch syndrome. So if you are concerned about anything at all, talk to your medical team about genetic testing to rule it out or to have the knowledge and to be able to deal with it. So thanks for letting me witter on.
I’ll be back on the air at some point talking about cancer, it’s emotional effects, my PhD research around the subject and writing and all things literary magazines, so I’ll see you again soon. Bye for now.