Angelina Jolie, cancer risk and clinical trials
Hello and welcome, I’m Dr Kat Arney, and with me to discuss the latest news is Henry Scowcroft. There’s really been one big story in the news this month – what’s that?
Henry: It’s the announcement by Angelina Jolie, actress and film producer, that she’s had a double mastectomy after learning that she’d inherited a faulty copy of a gene called BRCA1 from her mother, which – put together with various other factors about her life and genetics – led her doctors telling her she had an 87 per cent chance of developing breast cancer. To put that another way, it means that if there were a hundred women like her, with her background, 87 of them would go on to develop breast cancer, which is a much, much higher risk than in the general population, which is 12.5 per cent on average. Basically, if you take a hundred women on average, 12 to 13 of them will develop breast cancer, so Angelina Jolie’s risk of 87 per cent is a really, really substantial risk. As a result of that she decided to take action about this and decided that for her the right thing to do was to have a double mastectomy. It’s worth mentioning that she knew she was likely to have this gene because her mother died of ovarian cancer when she was just 56, and we recently learned that her aunt has died of breast cancer too.
Kat: Because that’s an important point to make – it’s not just that her mother had cancer and then she went with this very drastic activity. She clearly does have a family history, but she’s chosen not to make all of that public. Here in the UK, if you do have a strong family history, particularly of breast and ovarian cancer, you can go to the GP and ask for genetic testing and counselling, and it’s completely free.
Henry: That’s right. Anyone worried about having a strong family history of cancer can go and see their GP, talk things through with them, plot their family history out and why they’re concerned, and if this looks like there is something going on there the GP can refer you, free of charge, for genetic testing on the NHS. It will look for these cancer genes that we’ve found, through decades of research, to be associated with these really strong, high chances of developing cancer subsequently.
Kat: But it is only certain types of cancer. For example, there’s the BRCA genes – BRCA1 and 2 – that we know are linked to breast, ovarian and prostate cancer and a couple of other cancers. And then there’s things like p53, which is linked to a certain group of cancers, and some of the bowel cancer genes that we know about.
Henry: These things leave patterns in the family tree, if you see what I mean. You can spot by the way that different relatives get different types of cancers, and it is down one side of the family where a gene is passed on from parent to children and you see the tell-tale signs of these genes being passed on down the generations.
Kat: Obviously people will have seen this story in the media and it’s been covered in everything from broadsheets down to celebrity gossip magazines, and people have been very concerned. Our Cancer Information Nurse service received a lot of enquiries – I think they’ve had four times as many enquiries about genetics on this time last year, so I spoke to Julia Frater from our Information Nurse team about the impact of a big story like this, and what sort of things people were concerned about.
Julia: Mostly people with a family history of cancer, and not just breast cancer – all sorts of cancers actually - and wondering how that family history could impact on their future risk. Sometimes people had often wondered, but they hadn’t really done very much about it. So this was a bit of a kick-start for them to look into it in more depth.
Kat: And what sort of things can you tell people who are concerned about cancer in their family?
Julia: Well, we can talk over the many risk factors that come into play for people developing cancer – family history can come into it but it doesn’t necessarily play a big part. It depends, really, and looking at family trees, telling people the sorts of things they need to look out for, the sorts of things that would be useful to talk over with their GP, is quite useful. We haven’t had formal genetic training but we know the sorts of things that are going to be helpful to a GP to know whether they should be referring somebody on for a further, more detailed assessment.
Kat: You mentioned GPs – is that the first place people should go if they want to get genetic testing or counselling.
Julia: Yes, I think the GP is the first portal into the NHS, and the sorts of things we talk about are just knowing your family tree. It isn’t always who’s got cancer, it’s how many people are actually well and didn’t get cancer as well. And that can be quite difficult in families because sometimes things aren’t so well-remembered, there’s a lot of vagueness about who got what, so just trying to get a bit more detail and flesh out what you think is the family history, it may not actually turn out to be what you think it is.
Kat: So, overall do you think it’s a positive thing when a very high-profile story like Angelina Jolie’s hits the headlines.
Julia: I think it can be. I think it can make people alarmed as well, because most women with breast cancer won’t have a significant family history, and having a family history of breast cancer doesn’t necessarily increase people’s risk all that much – it very much depends on the details. So I think there’s always the problem that people could become unnecessarily alarmed. But most of the calls we certainly got and the emails we’ve had are from people asking pretty reasonable questions. And I think it can be useful if the media deal with it properly and get good quality information out there and people can read it, it can then prompt them to go and find out what they really need to know and how relevant it is for them. So I think it actually does have some value.
Kat: So that’s Julia Frater there from our Information Nurse team, and I think overall she paints a reasonably positive picture of people looking for information, trying to work out how it applies to them and thinking about the options they can take.
Henry: I think that’s absolutely right. This just shows how, with research taking us through new understanding of what cancer is, things are really changing down the generations for women. We published a story on our blog of a woman who talked about her own story about this. First of all she said she found it very empowering to know that Angelina Jolie had talked about this, because it made her more comfortable talking through what happened to her. But she also made the wonderful point about how, for her mother there really weren’t very many options. For herself, she was able to have a genetic test and, like Angelina Jolie, take the action of taking control of things and having a double mastectomy herself. But also for her daughters, the promise of continued research over the decades – and, of course, Cancer Research UK was instrumental in helping discover genes like bRCA1 and BRCA2 – through this ongoing research we can really start to make great progress so that future generations can have even more control over what’s going on and face even better outcomes and options.
Kat: And another story that’s been in the news this month about progress over the years has been about a completely different type of cancer – non-Hodgkin lymphoma (NHL). On average, since the 70s, we’ve seen survival rates doubling for this type of cancer. And now, although it’s the sixth most common cancer in the UK and about 12,000 cases every year, more than half of people will survive for at least 5 years. But it’s not just one disease – it’s very complicated and there’s about twenty subtypes, with huge variations in survival by subtype. There’s a type called Mantle Cell Lymphoma that about a quarter of people will survive, but more than nine out of ten people with Follicular Lymphoma will survive. But overall, the success that we’ve seen in treating this disease is really a testament to advances in molecular biology and cancer research. What do you think?
Henry: Absolutely. One of the things that struck me about this was that there wasn’t a single game-changing discovery that transformed things for people with NHL, it’s been this slow improvement in tailoring of treatment, understanding the different subtypes – and that’s something we’re starting to see across all types of cancer now, that once you start tweaking he treatment based on individual people’s type of cancer, you start to see collectively really large improvements. Key in all of this has been a drug called rituximab – I said there wasn’t one breakthrough, but the advent of this drug meant that doctors had a new tool that they could use to treat patients differently.
Kat: I think it’s fair to call it a game-changer for some of the types of lymphoma.
Henry: Absolutely, but it’s clearly something that’s been used alongside traditional chemotherapy, and knowing when to use it, what time to use it, has been one of the drivers of this improvement. So, for example, many of the trials carried out in Southampton, funded by Cancer Research UK and led by Professor Peter Johnson down there, have been trials looking at which types of lymphoma could benefit from rituximab treatment. And these trials were some of the first to prove that for things like Mantle Cell Lymphoma and a type called Diffuse B cell Lymphoma, rituximab definitely had some benefits here. But also, going back to the 70s and 80s, there was also work – again in Southampton and again funded by Cancer Research UK – that really helped usher rituximab out of the door, if you like. We discovered that targeting certain types of immune cell, called B cells, would be a good way to treat lymphomas, and we showed that targeting the specific types of molecules on their surface with antibodies would be a good way to treat that. And that really laid the groundwork for others to go on and develop drugs like rituximab.
Kat: So it’s a long-term story of how work over decades, understanding the faulty genes and molecules in cancer cells, has led to new drugs and led to really quite significant progress in survival. A good news story all round!
Kat: May 20th was international clinical trials day, commemorating the day back in the 18th Century when a doctor called James Lind ran the very first trial to try and find out what caused scurvy in sailors – the answer turning out to be a lack of vitamin C, and the solution being providing citrus juice for their voyages. Finding more effective treatments for cancer is somewhat harder, as there are more than 200 forms of the disease, and different patients respond in varying ways to treatment.
Proving that she’s no lemon, our reporter Flora Malein spoke to Kate Law, Director of Clinical and Population Research at Cancer Research UK to find out more about trials and how they help cancer patients.
Kate: A clinical trial is a very important way of bringing a new treatment along and making sure that it is in fact as effective, and or less toxic, than the standard of care. So it is about a true comparison of the current best practice: is the new agent, is the new treatment better.
Flora: What is the advantage for patients taking part in clinical trials?
Kate: Well the advantage for a patient is whether they draw the new agent or the standard of care, they will be an extremely well informed patient, they will get a lot of support from research nurses and from their clinician. They will be able to ask more easily questions as they go along through their treatment. They are very thoroughly informed about everything that will happen to them and they still do have the option to drop out if they want to. So I think they are probably the best informed and best supported patients.
Flora: So how does the UK do compared to the rest of the world in getting patients on to clinical trials?
Kate: The UK has a fantastic record of getting patients onto trials of which we can be truly proud. The average across the globe is around two to three per cent of patients going onto trials. In the UK it’s 20 per cent. And that’s due to a partnership between Cancer Research UK and the Department of Health that has achieved that in the last 10 years.
Flora: Is there actually a difference between children, adults and older adults in getting onto trials?
Kate: Yes - the 20 per cent is definitely an average overall. Children have a much higher rate of going on to clinical trials, which is great. Around 60 per cent of children go on to clinical trials and without doubt that co-ordination, which has been going on for decades, has been one of the reasons why the cure rate in children is actually better on the whole than it is in adults. So it was an aim to try and achieve what the children’s cancer people have achieved.
Flora: And what about older patients?
Kate: Older patients are challenging. Remember that by the time you get to 65-70 years old, you’re probably going to have other things wrong with you. You may be on drugs that will have damaged your kidneys, your liver or your heart in some way, for instance. So you have to be very careful. I think there’s a wrong reason for excluding the elderly from some trials but sometimes there’s a very good reason indeed.
Flora: Some people have criticised the amount of red tape surrounding setting up clinical trials. Can you explain why this might be the case?
Kate: We’re obliged to follow the rules of the European Union when it comes to clinical trials. They were brought in a few years ago with the best of intention, which is to protect patients. And of course we all want to do that. Unfortunately, what seems to have happened is rather than protecting patients, it has just delayed the setting up of trials, the running of them – it has made it extremely challenging, especially to do multicentre trials. Across the UK we might want to involve 100 hospitals and every one of them has to go through a virtually identical process of approval. It doesn’t make sense, it doesn’t actually improve patient safety or bring new and effective treatments sooner.
Flora: so what would you like to see done to improve the state of affairs?
Kate: They’re revising the guidelines at the moment and Cancer Research UK, along with many of the people we fund, are playing a key role in trying to influence those regulations so that, while they still maintain the benefit of protecting patients, they do take away some of the obstacles and enable us to set these trials up faster and get patients on to them
Flora: As cancer treatments become more tailored to the individual, talking about personalised medicine, what does this mean for trials?
Kate: Personalised medicine is on everybody’s lips at the moment as we try to profile patients in a more defined way than we have and break them in to sub-groups of a particular type of cancer and give them different treatment to the person sat next to them in the clinic with the same cancer. So it’s great and exciting but it does have challenges when it comes to trials because you’re dealing with smaller numbers inevitably for each group. We’re looking at ways of trying to ensure we get a quick answer with less patients that we’re confident about because you don’t want to miss a good drug because you didn’t continue for long enough. We also may have to go international. Even for something like breast cancer, if you start breaking it down into something that only five per cent of breast cancer patients have, you’ll probably have to look internationally to get the numbers. We’re quite well able to do that because of the rare cancer initiative we have and because children’s cancers have always had to be international. So I think we’ll have to build on that experience.
Flora: So how have clinical trials changed the outlook for cancer patients over the years?
Kate: Clinical trials have had an incredible impact on patients and survival. I would pick things like children’s cancer, where 30 years ago probably 80 or 90 per cent of them died and now 80 or 90 per cent of them are cured. You can’t think of anything much better than that. For testicular cancer in men, the figures were very similar. It’s almost a curable disease for everybody now, purely as a result of properly conducted clinical trials. In breast cancer there has been amazing progress as well. We still have a long way to go with others and also with defining these subgroups. But I would highlight some of the things that Cancer Research UK is going to be focusing on where the news isn’t so good – things like lung cancer, pancreas cancer, oesophageal and brain – and we’re really going to start focusing our efforts to start bringing them up to the same levels that we have in other cancers.
Kat: That was Kate Law talking to Flora Malein. And finally, it’s time for our heroes and zeros. We’ve already talked about Angelina Jolie’s brave decision to share the details of her cancer-preventive surgery. This month our heroes are all the other women who shared their own story of genetic testing and surgery in the media off the back of that coverage, proving that you don’t have to be a famous movie star to go through the kind of experience Angelina had. Telling personal stories is an important part of sharing the progress we’re making in beating cancer, and if you’ve got your own story to tell then please fill in the form on our website to get in touch. You’ll find it at cancerresearchuk.org/shareyourstory
And our zero of the month is the Queen’s speech. Amid the pomp and circumstance we were very disappointed to see that the speech didn’t include proposed new laws to bring in plain, standardised packaging of cigarettes, which would remove the glitzy packaging that attracts children. We think that if the Government is serious about improving the nation’s health and stopping so many people dying early – which it says it is - it must reconsider its decision and push for the early adoption of standardised packaging. Despite this setback, our fight isn’t over and with your support we we’ll continue to campaign tirelessly until the Government makes the right decision. Sign up to our campaign at http://bit.ly/StandardPacks.
That’s all for this month, we’ll see you again next month for a look at all the latest cancer news. We’d also like to answer your questions in our podcast, so please email them to firstname.lastname@example.org, post on our facebook page, or tweet us – that’s @CR_UK. And if you’re listening to this on Soundcloud, please leave us a comment with your feedback. Thanks very much and bye for now.