Sunday ` brought to you by Mazda. Tonight on Sunday ` preventing disease by predicting exactly who will get it. Once you've got it, then every child has a 50/50 chance of carrying it. The new frontier of genetic testing. I think I was 20 when I got the results. Saving lives,... < Is he lucky to be alive? < Is he lucky to be alive? Yes, absolutely. ...but how far will they go? I was 14 years old at the time, and, uh, my sister was 12. And Billy Connolly on staying young... Cos I'm 71, and I don't hang about with guys who are 71. ...and being back down under. # I'm like a super trooper... # travelling in NZ. # Captions were made possible with funding from NZ On Air. Copyright Able 2014 Kia ora. I'm Miriama Kamo. Imagine if you could prevent disease by predicting exactly who will get it and when it will strike, and then taking action before it happens. It sounds a bit like science fiction, but it's rapidly becoming part of mainstream medicine ` extending lives by tracking down genetic mutations that make whole families vulnerable to diseases like cancer. Tonight ` the world of the gene detectives here in NZ and the people getting help often before they know they're sick. Here's John Hudson. HISSING Wayne and Phillip Smith ` We love being in the water ` around it, on it, in it. Yeah. father and son diving buddies. (BREATHES RAPIDLY) Scuba-diving is quite dangerous. And if you don't do it right, you die. At first glance, you might think the Smiths are just regular amateur divers. Until they strip down to the nitty-gritty. That's not a mini aqualung Wayne's wearing; it's a colostomy bag ` his body's rubbish bin. When you're in there, you don't even notice it. Hasn't stopped me from doing what I love ` not in the slightest bit. Wayne and Phillip live active lives, even though both of them no longer have the guts that most of us take for granted. It is genetic, and that. You know, we develop polyps and, yeah, if they're not checked, then they go cancerous. Wayne and Phillip have a mutant gene that causes bowel cancer. And they aren't alone. A quarter of a million of NZers alive today will get bowel cancer by the time they're 75. Most will be more than 50 when they're first diagnosed. But there's a smaller group who are much more likely to get bowel cancer at a younger age. And they're the people that these cancer detectives are trying to track down, people who carry genes with names like FAP. Once you've got it, then every child has a 50/50 chance... of` of` of carrying it. So that's why you wanna test all family members? To work out who's got it, so that we can look after them and keep them safe. And we've got young age in two people, haven't we? The cancer detectives know almost everyone with the gene will get bowel cancer by their late 40s. < So what do you do about it? < So what do you do about it? The standard management... to avoid cancer... with confidence is to remove the majority of the large bowel. Wayne considers himself to be lucky, even though he's had his large bowel removed. But how do you get this gene? And how many other members of his family have it? My childhood with my mum ` bad memories. When Wayne was a boy, his mother, Kathleen, was very sick. I was a teenager when my mum spent a lot... She was in hospital? > Yeah. Sorry. That's all right. > When Kathleen died, she'd been ill for decades. So your mum had bowel cancer? So your mum had bowel cancer? My mum had bowel cancer, yeah, FAP. Yeah. As a young mum, Kathleen wanted her children checked for bowel cancer. The only test back then, though, an internal examination ` a colonoscopy. There's a doctor looking up your bum, up your back passage ` you know, not the most interesting thing. So even as a teenager, you knew that there was a chance you could inherit this disease? Yeah, my mum made me go. The doctors were searching for pre-cancerous abnormalities, like these. At 16, Wayne didn't appear to have any. And nothing ever come back from that. So Wayne got on with life. At 20 he married Donna. they had three children. But a few years later, the bottom started falling out of Wayne's world. To be honest, I... knew things were wrong later on in my life, about 30. about 30. What sort of symptoms did you have? Going to the toilet more than normal people would go to the toilet. And bleeding. Yeah. Yeah. And sore. Yeah. And sore. How long did that go on for, Wayne? Oh, it would have been 10 years. Yeah, as you say, ignorance is bliss. But clearly it wasn't bliss. What was going on in your head that prevented you doing something about it? I'm the man of the house. I never had time to be sick. I said, 'Your mum's got bowel cancer. Everyone knows that. Why didn't you go for a test?' He said, 'I didn't want to find out.' (LAUGHS) Lorraine, Wayne's sister, had a new genetic blood test. It showed what she had long suspected ` she had the mutant FAP gene. < So you were being monitored. < So you were being monitored. Yes. < So you were being monitored. Yes. < But Wayne wasn't. No. The cancer detectives had an inkling as to why Wayne didn't want the blood test. Because it was only women in the family that had been affected, the guys just thought this is a women's disease. And... So it was a case of they approached me, um, and I, sort of, 'No, not interested.' You know, 'Too busy, can't stop, working.' It was actually my wife that insisted that they do the check. > And she pointed out to me that to look after the kids, I needed to do this test. He had his blood test, and, um, they told us straight away, 'Wayne, you have this mutated gene.' Wayne's wife, Donna, had been right. It's a gene where it sits in your bowel, um, and it turns cancerous. I broke down cos I know... the condition. I knew I had... I had it. I had it. Yeah, you'd seen your mother? I'd seen my mother. And it doesn't matter what they tell you, you've got FAP, you've got cancer ` that's the condition. It's a death sentence. Wayne had ignored the symptoms for too long. He could hardly stand up, let alone climb on the bed. And they wheeled him away, and then it must have been less than 10 minutes and, um, Susan came back to me, tears running down her face. And she said, 'Donna, I cannot believe he's lived this long.' Um, 'Wayne is full of cancer.' Where would you be now if the cancer detectives hadn't tracked you down? I'd be dead. I'd be dead. And that's honest ` I'd be dead. After the break ` who else in the family has this mutant gene? I was 14 years old at the time, and, um, my sister was 12. And the really tough questions. How do you tell teenagers they need to have their bowels removed? 1 The Smiths are off on a family holiday, to the Gold Coast ` Wayne and Donna; their sons, Phillip and Jonathon. And soon they'll meet up with their sister Kathleena, who now lives in Melbourne. It's wonderful that we're actually gonna do a holiday with the kids and their partners, so we get to learn about their partners as well. Life might look like a party for the Smiths now, but just a few years ago they were faced with some really tough decisions about testing for the gene FAP. Wayne was a father and a husband, children were still dependent on him, and if that cancer was advanced, then his wife and his children would've been, um, deprived of a father and a husband. They knew Kathleen had passed the gene to Wayne, but has Wayne passed FAP on to any of his children? And what treatment should they have if they do have it? Once I'd been dealt with, then it was time for the kids to get checked out, so they all had their blood test. The DNA was split out of their blood cells to see if any of Wayne's children have the same genetic mutation their father has. It is tricky, and no one family's... the same and no family dynamics are the same, so you have to tread quite carefully. And when Phillip, Jonathon and Kathleena were tested, they were still teenagers. I think I was 20 when I got... when I got the results, so... Not what you wanna hear as a 20-year-old? > Not what you wanna hear as a 20-year-old? > (CHUCKLES) Uh, not really, no. No. Phillip had the FAP gene. His brother and sister didn't. Wayne's sister Lorraine discovered her son Jamie also had the FAP gene. I was 14 years old at the time. How do you tell a teenager, 'Look, you're not sick now, but you need to have your bowel removed'? By the time they actually have had the test result, they've had a couple of conversations. And we've talked about how they might feel if they find out that they've got a positive test. They're already aware of what's going to happen. Over the next couple of years, they spoke more and more about the... the possibility of an earlier, um, removal of a section of bowel, um, because the gene was quite strong in our family. I remember going, 'OK, well, let's... let's get this surgery over and done with, you know, 'so I can, you know, prevent what happened to Dad happening to me.' When it came time I didn't have any problems, because I was so well looked after, and at 18, I was ready because I knew, you know, what my family had been through. I had an elective colectomy, I believe. And I've got the last 10cm of the large bowel. It's radical surgery for a teenager, but it means they can continue to live a normal life. Has it cramped your style, having that surgery? Has it cramped your style, having that surgery? Um, no, I don't think so. I don't think so. Yeah, we still dive. And he's just got on with his life. How much of a difference does this preventative surgery make for people with this FAP gene? Oh, a huge difference. You're taking your co-rectal cancer risk from 100% in the 40s to... a very very small chance of... of getting it ` that's huge difference. Being afraid is probably not having it done, because I know what can happen. It means that I don't have that risk. Neither Jamie nor Phillip regret having the preventative surgery to counter the FAP gene. Do you worry about passing the gene on to children that you might have? > Yeah, it's always in the... in the back of my mind, you know. Science has come so far that it's now possible to detect the mutant gene before a baby is born, but that's not a test Phillip would contemplate if he becomes a father. Yeah, I did think of that, you know, but at that stage, I wouldn't do anything about it anyway. You know, just, um, add an extra 40 years, maybe technology's even better, they can just rid of it completely. And he might be right ` genetic testing is changing medicine, making it easier to track down and perhaps in the future, prevent mutations that in the past have put thousands in an early grave. It really is evolving quite rapidly. There's about 20% to 25% of people will have a family history of bowel cancer ` we know that we can identify genes that account for just under 5% of those people. But a lot of the work is trying to figure out what genetic, uh, components are contributing to that other 15%. As it turns out, only two of Kathleen Smith's 10 grandchildren have the FAP gene. And her children? Well, a generation ago, people like Wayne Smith would have died of bowel cancer in their 40s. How was it? How was it? Oh, beautiful. How was it? Oh, beautiful. Yeah? But at 52, Wayne is still very much alive, thanks to his insistent wife, Donna; thanks to the cancer detectives, like Susan Parry. < Is he lucky to be alive? < Is he lucky to be alive? Yes. Absolutely. They saved your life. > They saved your life. > They saved my life. Very much so. Well, if you have any thoughts on that story or your own experience of gene technology, then we're interested in hearing from you on Facebook or by email. Well, up next ` Billy Connolly. Seven years since his last visit, he's back. Go! < You didn't have second thoughts? < You didn't have second thoughts? I had second thoughts about being naked once I'd stopped bouncing. My God, this is lovely! I felt like a dirty old man when I was coming up. Where's my thing? Oh, there it is. Hello again. Billy Connolly ` he knows us well. The Scots comedian has been splitting sides here since the '70s. And now he's back for another tour, but this time there's something different about Billy. Tonight he opens up to Ian Sinclair about old age, conquering cancer and the unexpected upside of his latest challenge ` Parkinson's disease. Thanks for coming on. Great to meet you. Come and take a seat. Billy Connolly ` never a man to second-guess. Old age, for example ` he's got an unusual take on that. Well, the` the best thing is don't have friends your own age, you know. Cos I'm 71, and I don't hang about with guys who are 71. They're playing dominoes somewhere. I like to hang about with just the younger... just people who do the same thing, rather than who are the same age. He says, 'I'll give you some advice on turning 60 ` never turn down a chance to have a pee.' I said, 'Right. Fine.' 'Second ` never trust a fart.' LAUGHTER Whatever the age, Billy hasn't lost the will to shock. And last time he was here, his documentary series proved just that. And you are known for a little craziness. The naked bungee jumping, for example. Oh, yeah. You ready? You ready? Yep. I'll tell you the weirdest thing ` when you're out on that wee two-by-two ledge, you're going, 'Oh, gee, I better watch I don't fall.' I mean, you're about to plummet into this valley. Go! Oh! You didn't have second thoughts? You didn't have second thoughts? I had second thoughts about being naked once I'd stopped bouncing. My God, this is lovely! I felt like a dirty old man when I was coming up. Oh, where's my thing? Oh, there it is. On the way down I was just dandy with it all. But on the way back up I thought, 'Oh, God, what have I done?' (LAUGHS) It was lovely. It's 10 years since his last NZ tour. First floor, ladies' lingerie. And this time there's a different, more vulnerable Billy on show. And of course there's been all the stories about your health now. How's that going? Oh, yeah, it's going great. Well, I have Parkinson's disease and it won't go away. It's, uh... It's here to stay unless they find some miracle cure. And I had cancer earlier ` you know, the prostate cancer ` but that's cleared up as well. You've conquered that, haven't you? Yeah. Yeah. How did you find out that you had Parkinson's disease? It was beyond belief. I` I was doing the Conan O'Brien show in California, and they put me up in this hotel called the Sportsmen's Lodge in Los Angeles. And I was coming through the lobby one day, and there was a dancing troupe of schoolkids, and three or four adults were in charge. And one of them came over and said, 'Billy I'm a big fan,' and all that, 'Oh, yeah, I'm from Tasmania. I'm a doctor.' He said, 'And I've been watching you walking in and out of here, and I can tell by your gait,' he said, 'that you have early onset Parkinson's disease.' He said, 'I could be wrong, but check it out with your doctor.' And so I did the following day, and he was right. So is there any treatment for it? So is there any treatment for it? No. As a matter of fact, they had me on drugs, and then Dustin Hoffman put me on to this specialist in New York, and, uh, I went to see her and she took me off the drugs completely. And I've been feeling much, much better. (LAUGHS) And I've been feeling much, much better. (LAUGHS) The side effects, what were they? The traditional side effects with this drug is, uh, feeling oversexed and a` and a desire to gamble. Oversexed? Well, I've been oversexed all my life, but the desire to gamble just didn't exist. I am a very limited kind of fellow when it comes to the old sexology. I, uh... Well, I'm not all that bad at it. You know, for a man my age, I'm not too terrible. LAUGHTER And what about your memory? And what about your memory? It's not bad, but it was never good anyway. I was quite famous for just losing it and changing the subject and flying off and coming back later and all that. and coming back later and all that. And, of course, you never work from memory, anyway, do you? You just have a conversation, it's spontaneous? Well, part of it's memory because you can't rely on the spontaneous, cos some nights it just doesn't show up, you know? It might be raining and you're not feeling so good and you've had a long day's travel and it doesn't work so well. and it doesn't work so well. Cos that's one of the big challenges for comedians, isn't it, to... You're only as good as your last joke ` to come up with a new joke? Absolutely. That's why we get very jealous of singers ` you can sing the same song for years and years and people actually like it more as the years go by. As a matter of fact, you show up and do new stuff, they get all pissed off. 'Oh, never mind the new stuff; give us the old favourites.' When I was here before, you couldn't get a curry; you couldn't get bugger all. You couldn't get a salad without a lump of ham and a boiled egg in it. You couldn't get dinner after 8 o'clock. I said, 'I go on at 8!' It seems with you that the comedy's incredibly natural. Oh, that's a trick. Oh, that's a trick. Really? Yeah, there's nothing natural about standing in front of thousands of people, claiming to be the funniest man in the room. You know, it... it makes you shaky. It's a serious business, then? It's a serious business, then? Yeah, even shakier than Parkinson's. # I'm like a super trouper... # travelling in NZ... Still, Billy remains hooked on the stand-up. For him, one thing is still the best medicine. # I'll find myself a nice big ewe. # # I'll find myself a nice big ewe. # LAUGHTER And there's always been that, um, lip you've got. Has it ever got you into trouble? Oh, all my life. Oh, all my life. Can you tell us your worst case? Yeah, I've been punched on stage, yeah, in Brisbane. Yeah, I've been punched on stage, yeah, in Brisbane. How did that happen? I don't know. I can't remember what I actually said, but the guy took offence. He was a Scottish Australian prison officer, and he come up and belted me one. He said ` and I'll never forget his line ` he said, 'My wife's ears are not garbage cans', and he had a swing at me. But he thought` he obviously thought my beard... my chin came to the end of my beard, and he went... And I said, 'Is that the best you can do?' And he said no and headbutted me. You treat the single lane like a pit stop. LAUGHTER (IMITATES ENGINE REVVING) If I overtake you,... it's nothing personal. LAUGHTER In his search for humour, Billy has turned to an unexpected subject ` his latest doco is on death. How do you make that funny? Well, death isn't funny at all, but the... the stuff surrounding it can be funny, you know. I` I got the idea years ago, long before I got sick. But all of a sudden when it came up, I had been sick, and so everybody thought that it was connected with the cancer thing, but it wasn't. What did you learn about death? That the people concerned with it, the people who work in it, are rather nice and funny. And, uh, there's no need to go down a traditional route ` there's lots of alternatives. There's some staggering ones, like some of them... My favourite was one where they... you send your ashes up with a balloon and they sprinkle clouds with it and you come back as rain. (LAUGHS) You can rain on your friends. (LAUGHS) You can rain on your friends. So what would your choice be? I like the feel of... The one that appealed to me most was the green one. Just... Just bury you in a sheet in a... Just dig a wee hole and put you in ` there's no coffin or anything. So you become part of the world again. You'd have to have the last word, though, wouldn't you? What would` What would your line be? Jesus Christ, is that the time already? Jesus Christ, is that the time already? LAUGHTER Uh, Billy's here for another month, and true to form, his tour covers the country from Auckland to Invercargill. Now, remember Analise, the engaging Christchurch girl who struggles with Tourette's? Cellulite. This is Tourette's as you and I know it. All hail Lucifer. Penis. But Tourette's is misunderstood. It's not a condition about cursing,... Mother... CONTEMPLATIVE MUSIC ...but rather it's where involuntary actions known as tics take over. MUSIC CONTINUES And this is what's happening to 9-year-old Analise. It can get hard when she's making the massive tics which put her to the ground. Yeah. Well, since that story, many other NZ families dealing with Tourette's have found each other. Analise's mother is now helping to organise Camp Twitch so these children and their parents can meet and celebrate what makes these kids tic. So please see this website to know more or to donate ` tourette's.org.nz Well, that's it for tonight. Do check us out on Facebook ` Sunday TVNZ