Swollen tummy? Can’t eat? Always feeling full? Tummy pain? If you’ve experienced any of these symptoms – frequently and persistently – it’s important to see your GP and rule out ovarian cancer as a possible cause.

Every year 6,800 women in Britain are diagnosed with ovarian cancer and, unfortunately, UK survival rates are among the lowest in Europe. The good news is that with early diagnosis, 90% of women survive.

The big problem is that symptoms are similar to those of common gastric complaints, like Irritable Bowel Syndrome, so GPs can find it hard to diagnose. The risk increases with age and ovarian cancer can run in families so it’s worth speaking to your GP if there are two or more cases of ovarian and/or breast cancer on one side of your close family.

Target Ovarian Cancer, a new national charity, is keen to alert women and their GPs to the symptoms of ovarian cancer especially as March is Ovarian Cancer Awareness Month.

Log on online to hear from the BBCs ‘Street Doctor’ – Dr Ayan Panja and Frances Reid,Director of Public Affairs at Target Ovarian Cancer who will be in the studio to answer your questions about this little known disease; including how to recognise the symptoms, common risk factors and how to cope with a positive diagnosis. It is essential advice that no woman can afford to be without.

Dr Ayan Panja and Frances Reid, Director of Public Affairs at Target Ovarian Cancer join us live online to discuss ovarian cancer.

For more information visit www.targetovarian.org.uk

H: Lis Speight, host
A: Dr Ayan Panja
F: Frances Reid, Director Public Affairs, Target Ovarian Cancer

H: Hello and welcome to the Healthcare Show, I’m Lis Speight. Now then were you aware that 6,800 women are diagnosed with ovarian cancer every year. the symptoms often go undetected, and the UK has one of the lowest survival rates in Europe. Shocking stuff. Well joining me in the studio to talk through this very challenging subject is Dr Ayan Panja, welcome along, really nice to see you today. And also Frances Reid from Target Ovarian Cancer, welcome along Frances it’s great to see you both.

F: Hello, thank you

H: Now before we ask our experts a little bit more about ovarian cancer, remember that we are live today and we’d love you to get involved, so if you want to ask any questions from our two experts then please do get them into us, all you have to do is to type your name and where you’re from, and your question in the box that’s on the screen, press submit, it’ll come through to us here in the studio and we’ll try to get through as many as we can during the course of the show. Now let’s start off by asking Frances a little bit about the ovarian cancer situation in the UK – it sounds pretty grim actually Frances. Tell us some of the stats –

F: Yes as you said 6800 women diagnosed each year. after breast, lung, bowel and endometrial, it’s the fifth most common cancer in women. So it is a significant issue. Survival rates have remained at around 30% for decades in fact

H: That’s bad, isn’t it, in fact really?

F: That is bad, and in that same time period with say breast cancer for example, you’ve seen a rise from 50% up to 80% which is fantastic news

H: Yes

F: So we’re really hoping that you know with effort and commitment we can begin to see those changes happening in ovarian cancer

H: Ok, so Ayan tell us a little bit more about this cancer then – why is it known as the silent killer?

A: It’s known as the silent killer because historically it’s not something that we thought presented with any symptoms, and if it did, women didn’t pick up on them or report them to their doctor, and actually interesting the time from being diagnosed with ovarian cancer from the onset of symptoms, which I’ll come to in a moment, is about 12 months, so that’s a very long time, and so often by the time the diagnosis is made it’s too late, and unfortunately you know the disease has set in and it’s not possible to sort of do anything too active

H: Is it quite a rapidly spreading cancer then once it takes hold?

A: Well it depends at the point of diagnosis really and that’s the trouble – previously it’s been diagnosed at a stage where it probably has spread, and once it sort of spreads out of the pelvis it starts to affect other organs. It can spread to the liver or to the lung, and at that point things are really pretty grim

H: Yes you’re fighting a losing battle really a lot of the time. So what are the symptoms Ayan? What should we be looking out for as women?

A: Well new research and new studies have shown that actually up to 90% of women do have some symptoms at some point, and they include a collection of things; the main one is a feeling of bloating or a feeling of fullness. Now a lot of people out there are thinking well I get that sometimes, but the key thing is it’s bloating, fullness, difficulty in eating, but it’s usually in women over the age of 40 and it’s the persistence of those symptoms. If you get them every day, you’re getting them every other day and it’s not going away, that really does warrant a trip to the doctor.

H: And is it easily misdiagnosed then, ovarian cancer? Because that sounds a little bit like you might have stomach problems or something else that your symptoms of ovarian cancer could be masked by you thinking you’ve got something wrong with your stomach

A: That’s right, I mean that’s absolutely right, it is misdiagnosed unfortunately or you know sometimes you know women are told they might have irritable bowel syndrome or another condition that presents like that, and the reality is that you know if it starts suddenly, if those symptoms suddenly appear out of the blue it’s very unlikely to be something like irritable bowel syndrome, so alarm bells should start to ring and no one, no doctor is going to think that you’re wasting their time because this is a serious thing, and I think the best thing to do is to actually go to the doctor and say look I am worried about this, I’ve got this symptom, I’ve got that symptom, I’ve got bloating, I’m not feeling well, I just want to make sure –

H: Double check

A: You know make sure that this isn’t anything serious

H: Any other symptoms that present themselves then, sort of bloating, it’s a little bit vague that isn’t it? Anything else that –

A: It is. There can be a lot of things, I mean as I said abdominal pain is also another one, particularly in the lower area. Back pain occasionally and you know recurrent urine infections for no reason in a woman who’s otherwise been absolutely fine. Those are things that we would look at

H: Ok so Frances it doesn’t sound like the UK is doing very well on this – why? What’s going wrong in the UK? Why are we not picking it up? Why are so many women dying of it?

F: Ok it’s a really interesting question and it’s one that we at Target Ovarian Cancer are trying to work on to try and find out some of the answers to that. Certainly one of the issues is the rates of late detection. Currently ¾ of all women who are diagnosed with the disease are diagnosed when the disease has already spread as Ayan explained into the pelvis, which makes treatment challenging for sure. The aim would be to reduce the rates of late diagnosis and to reduce delays in being diagnosed. Often women do have significant delays. We’re doing a very large study at Target Ovarian Cancer, a pathfinder study, and as part of the initial findings of that, yes, women most definitely do experience significant delays, are often told they’re suffering irritable bowel syndrome, diverticulitis –

H: Right. That’s frightening isn’t it? So they’ve been to their GP and still hasn’t come up?

F: Yes but I think the thing is if things persist then they should go back and they shouldn’t be afraid to go back, and I think you would agree with that?

A: Absolutely and I think, you know, also people feel that there’s a sense of awkwardness, particularly with male doctors or that you’re bothering the doctor again even though you’ve been – that’s absolutely irrelevant here, you know this is something that is potentially so serious that if that is how you feel you should go and see another doctor at the same practice, or go back to the same doctor and say look, I’m sorry to bother you but I really am worried about this, please can you sort of investigate this further, and most of the time there won’t be anything to worry about

H: Yes. But if there is it’s better that you go and get it sorted out, because –

A: Absolutely

H: If you leave it – the longer you leave it, the less likely you are to survive it –#

A: Exactly. Hence the “silent killer”

H: Yes. So let’s move on to some of your questions now because we’ve had quite a few coming in. We’ve had one from Mrs Wardall and a long question this, but I’ll read it out – she said “my mother aged 53 died of ovarian cancer shortly after finding out. My auntie, who is my mum’s sister, had ovarian cancer at 50 years old and survived but has since had breast cancer, and she also survived some nearly 18 months ago, she had her breast cancer,” so she’s saying “what are my chances of developing ovarian cancer like my mum and auntie?” She’s 49 years old. What are her chances? Big question isn’t it?

A: It is and I think on first hearing of that I’m sure she’s very worried already you know with that kind of history, and there are ways and links actually between breast and ovarian cancer, and there’s ways of testing for those through genetic counselling – there are these genes called BRCA1 and BRCA2 or BRACCA 1 and BRACCA 2, that in 10% of women there is an overlap between the link between breast and ovarian cancer which runs in families, and I would actually suggest that she goes to her doctor and discusses that and gets referred for that genetic counselling, because otherwise she’s going to be worrying about something and –

H: That doesn’t do you any good either

A: And waiting for it to develop –

H: Does it?

A: No not at all and you’re just waiting for a disease to happen, whereas this will give you the heads up on that

H: So it is a hereditary thing is it Frances?

F: It can be a hereditary thing. One in ten cases will be due to some inherited malfunction in these genes BRACCA 1 and BRACCA 2 genes

H: Right

F: Obviously if you have one relative who has ovarian cancer you are likely to be concerned about your own risk, but the studies show that your risk is only very slightly elevated. If you have two cases of ovarian cancer on the same side of your family in particular, so your mum and your grandma, or your mum and your aunt, your mum and your sister, then it’s definitely worth going and talking to your doctor about your own risk, and it’s equally important to be as aware as you can about the symptoms of ovarian cancer

H: And is there any sort of screening that you can have done? I mean we’re talking a lot about cervical cancer at the moment with Jade Goody being in the headlines etc, and we all know about cervical cancer screening – is there anything you can do for ovarian cancer screening?

F: Well actually the link, well not the link to cervical cancer, but you talking about cervical cancer is interesting – almost half of all women do actually confuse the two conditions

H: Oh goodness, yes

F: So most women can’t name a single symptom of ovarian cancer, but if they do they’re often confusing it with cervical cancer. And they’re not the same condition, and women obviously believe that the smear test will detect –

H: Both – so they’re sort of covered, they think that if they have the smear test then they’re covered, but that’s not the case?

F: Yes so they’re not really aware of their risk and what they need to be looking out for. So in terms of ovarian cancer screening, there are trials ongoing at the moment. They won’t report for a number of years yet, both in screening the general population but also into screening women who have a family history, strong family history of ovarian cancer. Now they won’t report for a number of years and in the meantime the evidence that is there suggests that they’re not accurate enough to warrant their use. We hope that you know in the timescale of these trials that new findings will be found that mean we do have a test, but that’s still some way off yet

H: Yes. And what about treatment, Ayan, what is the treatment if you find out you’ve got it, what happens?

A: Yes well just going back a step in terms of what you may do before actually, you know getting the diagnosis. You’ll probably have a vaginal scan and a blood test for, you know, this marker called CA125 which are the two things which are not accurate enough to form a screening program. Then diagnosis normally happens with something called a laparoscopy, it’s sort of an operation that has a direct look at the ovaries, and if you’re unlucky enough to be diagnosed with it, very quickly you would be referred to the local gynaecological cancer centre where you’ll meet an oncologist, and they will – the first thing they will do is stage the cancer, so is it confined just to the ovary? Has it spread beyond the pelvis, and that really governs the kind of treatment that you would get, so if it’s just on one ovary for example, occasionally surgery on it’s own is enough, and you may –

H: Just to catch it

A: That’s right, and you may have a bit of chemotherapy, but most other cases require surgery and chemotherapy and sometimes radiotherapy further down the line

H: Goodness. And you’re going to lose your ovaries are you?

A: Yes, I mean that is pretty – yes a certainty really, so that’s obviously a concern. And psychologically it’s a very difficult condition as well because it’s – you know it’s, there are so many links, you know it’s obviously in terms of fertility and all those other sort of things that it’s related to, so yes you would have something called a de-bulking procedure which is – which really removes the womb as well as the ovaries

H: Right, so it’s a big operation isn’t it? Is it largely menopausal women that get this cancer?

A: Yes I mean you can get it at almost any age, I mean you – I’ve certainly seen it in women in their 20s which is very rare, but most commonly it’s over the age of 40

H: Right

A: And the older you are the more likely you are to develop it

H: Right. And if you do find that you have it, is there actually a cure? Frances you’ve dealt a lot with people who are sort of living with ovarian cancer -

A: Some people can be you know successfully treated – we have one lady who’s working with us at the moment that was diagnosed five years ago with the stage 4 ovarian cancer

H: Goodness, yes

F: And she was given a sort of very poor outlook, and she’s doing fantastically well, so some people can do well. The later stage that it’s diagnosed at the more challenging sometimes that journey can be, and we hope as time goes forward and as treatments improve that you can almost turn this into a chronic condition rather than it being something that kills you, but that you can turn it into something that you can live with

A: That’s right

F: On an ongoing basis

H: So Ayan have you had much experience with people living with ovarian cancer?

A: It’s not very common, I mean in terms of – on a primary care level because as a GP you probably see one case every 5 years so I have had –

H: Which is very low isn’t it?

A: Which is rare – that’s why, that’s another reason why it’s so hard to pick up because you tend to see a lot of women with bloating. But yes I have, I mean I have you know a patient now whose going through that and the treatment and it is just difficult for the whole family because the treatment is often very long, and you’re so ill with it, it’s not like cervical cancer which if it’s picked up – which is generally picked up at a much earlier stage so it’s treatable, and sadly – and that’s why we’re talking about this really, because we want women to kind of report the symptoms earlier, so if we catch it earlier then the results will be a lot better

H: Yes, ok. Well we’ll move on to more of your questions and we’ve had one in from Patty, she says – it’s a bit complicated actually but you’ll probably understand it Ayan – I don’t think I do! “I understand that elevated AFP levels can be indicative of ovarian cancer. My level was 26 and I understand the normal range is 1-15. Should I be concerned or not?”

A: Well Alpha-Feta protein, which is what AFP is, is something, is a teamer marker that we use for testicular cancer

H: Right

A: I’m not aware of it being used widely for ovarian cancer, and I’d want to know why she had it done to be honest, because it’s quite, it’s very difficult to answer that –

H: Without seeing her –

A: Yes absolutely

H: That’s all we’ve got to go on

A: And even the teamer marker that is more specific for ovarian cancer, CA125, it’s often inaccurate, it can be raised but you may not have ovarian cancer, and that’s why it’s not part of the screening program because it can unnecessarily worry people, so an interesting one, but I can’t answer it without more information

H: No. So maybe if she goes back to her GP to talk –

A: Yes yes

H: About her test a little bit more

A: I think so, and why she had it done, yes

H: Ok. Another question that I’ve got actually – is there much support for sufferers out there? Because we hear a lot don’t we about breast cancer and prostate cancer but ovarian cancer, I don’t know anyone whose got it – is there much support Frances?

F: Ok, with the Target Ovarian Cancer Pathfinder study, one of the issues that we have looked at and asked women about in the initial phases are the level of support that they have, and they really vary quite widely. The best place to start is your local specialist nurse if you have one, and they can direct you. Sometimes there are local support groups in areas which are really helpful, otherwise there are national phone lines that you can call. Macmillan run one and Overcome run one, and our website has details of how you can make contact with those as well, but emotional support really is quite a big issue for women, as Ayan said it’s a complex and challenging disease, and it throws up an awful lot of issues for women. Particularly actually when they come off the first round of treatment, because they’ve been in hospital, they’ve had major surgery, they’ve undergone quite intense chemotherapy, you know they’ve been followed up very closely, everything’s very – you know it’s all happening and then all of a sudden it’s ok go now,

H: Yes and you’re left aren’t you?

F: And they’re left wondering, you know is every stomach pain that they have, is that the cancer coming back

H: Horrible

A: That’s right

F: They have issues to do with work, many of them have to give up work and that’s something else the pathfinder study is showing us, that you know financial issues and workplace issues are very important as well, so they have a lot to deal with and their local clinical nurse specialist actually is a really good port of call, but often they’re very tied up, they have lots of case load to deal with, but it is important that women do get support as they go through this

H: And do you think that enough is being done at a strategic level? Do you think enough money is going into this? Of course it isn’t, said Frances!

F: Of course it isn’t she says!

H: Explain a little bit about, you know -

F: Ok

H: How underfunded it is really

F: It is, it’s greatly underfunded in lots of areas, if you look at the breast cancer whereas as I say you have seen huge rises in survival, that has been attributed to a range of things – increase in levels of awareness amongst women about breast symptoms. Investment in research. Lots of women raising the money to go into research, lots of money going into research, and also the screening program, that’s helped deliver it

H: Yes

F: If you scale that down to match up the numbers that fit for ovarian cancer, you would expect something like £17 million going into this each year, and you’d expect, say in the charity sector about 70 people working there, it’s a lot, lot lot less. The last reported financial year there was £3 million going in

H: Goodness, yes – so

F: We’ve set up as a new charity, in order to try and address that, to try and bring in some new money into the area, through people who want to support this and put their backing to try and make progress happen, and to find out by working with the women who have ovarian cancer, with GPs, with health professionals in hospitals, opportunities to drive up those levels of survival, both in the UK, within the UK and in terms of comparing it to Europe

H: Right

F: And just finding simple ways that we can improve quality of life for women with ovarian cancer. So there’s an awful lot more to be done, an awful lot more

H: You’ve got a lot on your plate Frances haven’t you? Goodness me

F: It’s a challenge

H: We’re nearly out of time actually, but Ayan is there any way that women can actually protect themselves against ovarian cancer? Diet or anything like that?

F: It’s a good question, I mean specific to ovarian cancer, I mean obviously in terms of all cancers diet is very important and there are sort of, we were having a chat earlier about foods that can protect you from cancer, and garlic is known to have that kind of affect, and green vegetables, so that’s a general diet thing for all cancers. There are other factors that protect women from ovarian cancer. So one is if you’ve been on the contraceptive pill you’re less likely to develop it. The other is if you’ve had children, and if you’ve breastfed your children, then that’s also a protective thing, so – and beyond that, you know a lot of it with cancer, it is, some of it’s luck

H: It’s random isn’t it?

A: That’s what’s so difficult

H: Or bad luck

A: And of course there’s smoking which is probably the most important –

H: Ok well look Frances and Ayan thanks so much for coming in and talking to us about it, it’s such an important subject, this, isn’t it? And one that we just don’t know enough about – if you want any more information at all about ovarian cancer you can go to the website which is targetovarian.org.uk. And if you have any of the symptoms that we’ve been talking about, don’t just sit at home and worry about it, get yourself down to your GP, and if it is just irritable bowel, it’s a bit embarrassing isn’t it, but the doctor’s seen it and heard it all before, so don’t leave it too late. Make a phone call today. Thanks for watching the healthcare show, we’ll see you next time. Bye bye