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Ovarian Cancer

Symptoms of ovarian cancer

Ovarian cancer is the fifth most common cancer among women in the UK, with about 7300 new cases each year (Cancer Research UK 2016). The risk of developing ovarian cancer is very low in young women and increases as women get older. More than 8 out of 10 (80% of) ovarian cancers occur in women over the age of 50 (Macmillan Cancer Support May 2015).

Ian Jacobs, a professor of gynaecological oncology, explains that the symptoms tend to be vague and non-specific and are common to many other, less serious, conditions, and that most women with these symptoms turn out not to have cancer.

 

A Doctor explains that symptoms usually occur when ovarian cancer is already advanced and that...

A Doctor explains that symptoms usually occur when ovarian cancer is already advanced and that...

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One of the major problems with ovarian cancer is that there are very few symptoms of the cancer when it's in its early stages. The symptoms really reflect the fact that the cancer has spread outside the ovaries to the surfaces within the abdominal cavity and the pelvis, and are symptoms of advanced stage cancer. So the symptoms by and large are of abdominal swelling, and vague discomfort, of indigestion, sometimes of frequency passing urine, but they're not specific to ovarian cancer, they're common in all sorts of other conditions. Most of the women who develop ovarian cancer are over 50 years of age and have reached the menopause, and many of those women will have symptoms of abdominal swelling or distention or indigestion for all sorts of other reasons which have nothing at all to do with ovarian cancer. In fact the vast majority of women with the symptoms that occur in advanced stage ovarian cancer will have entirely benign conditions.

So is there nothing that's specific to ovarian cancer or even to a gynaecological condition?

There's a lot of work going on to see if its possible to identify what we might call a symptom complex which would be helpful in picking up ovarian cancer earlier than it's currently detected. There are all sorts of problems with that. Not least, the first problem, that if we pick out women on the basis of those symptoms, the vast majority almost certainly will not have ovarian cancer, although we may include rather more women with ovarian cancer than would otherwise be in a population picked for screening. The other problem is that even if we can identify symptoms that allow us to identify ovarian cancer earlier in some women, we still don't really have any evidence that we'll be picking up ovarian cancer early enough to save the lives of those women, so we may be picking it up a little bit earlier in the course of the disease, but perhaps not early enough to make a real difference.

The three most common symptoms of ovarian cancer are:
  • Bloating that is persistent and does not come and go
  • Difficulty eating and feeling full more quickly
  • Abdominal or pelvic pain that is experienced most days
These symptoms are frequently experienced by women, however when they are experienced frequently, persistently and severely the likelihood of ovarian cancer increases (Ovacome 2016).

Other symptoms include:
  • Needing to pass urine more often or more urgently (feeling like you can't hold on);
  • Loss of appetite;
  • Nausea;
  • Unexplained weight change;
  • Pain in the lower abdomen or back;
  • Abnormal vaginal bleeding;
  • Pain during sex;
  • Changes in bowel or bladder habit such as constipation or diarrhoea, and
  • Breathlessness.
Most women with ovarian cancer have only some of the symptoms, or may not notice any for some time.

 A lot of women we interviewed stressed that they did not think anything was seriously wrong because the symptoms are vague and tended to come and go or ease off after a while. Some women described a 'niggle' on one side, had a dull ache or tenderness or felt 'heavy in the pelvis' while others were alerted by definite lumps, sharp pains or a cramping feeling with bowel movements. One woman said she woke up feeling 'as if a balloon had popped in my tummy', another described a strange feeling that 'the usual muscles that (move your bowel or empty your bladder) aren't doing what you want them to do'. Some said that only when looking back did they realise that minor, vague symptoms were probably connected to their cancer.

Women usually attributed their symptoms to other causes such as mid-life changes. Many noticed that their waists had got bigger but blamed mid-life weight gain and just bought larger clothing or garments with elasticated waists. However, others were aware that this was not normal weight change - one said that she was the same weight but had just changed shape around her abdomen, and several said that they had looked pregnant. Others attributed their symptoms to stress, irritable bowel syndrome, ovarian cysts or fibroids. A few thought they might have bowel cancer.
 

Attributed her symptoms to mid-life changes.

Attributed her symptoms to mid-life changes.

Age at interview: 53
Sex: Female
Age at diagnosis: 52
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Sometimes it's interesting to examine the causal links, like for example there was no ovarian cancer in my family and ovarian cancer is called the 'silent killer' for a reason because, you know, I think women always have pains and because I was reaching menopausal age I really kind of thought these pains were related to my ovaries drying up or, you know, your body going through the change because you expect that. You think 'well of course, you're 52 your body's going to go through change' so you tend to incorporate those pains and not necessarily think that they're linked so something that's, you know, worrying.

 

Attributed her symptoms to stress.

Attributed her symptoms to stress.

Age at interview: 58
Sex: Female
Age at diagnosis: 44
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And I really hadn't felt ill, I'd lost a lot of weight prior to that, but I'd had a year of ' the year before my sister's youngest son had been killed tragically on a school trip, he'd been, he was 14, and I'm very close to my family, especially my sister and her two boys, and losing my nephew was one hell of a shock. And I had to be one of the people that had to be, I felt I had to be very strong and help my sister. And you can't help actually, but you, you make things tick. You, you keep the house running.  You, you feed them, and you do things for them.  

And also that year, I did a course at, I had half-day release from work, to do a course in London, for my job. And also my husband was going through the chair as a Mason. And I was cope, we were coming up to the ladies' night in the summer and I'd assumed that all this weight lost was' (a) the shock of my nephew, (b) I was taking the exam on the Wednesday, and the ladies night was on the Friday, and it was all sort of traumatic and having to make a speech and, so I'd put all my weight loss down to that. And that was the only real indication that I had that anything was wrong with me.  

 

Attributed her symptoms to irritable bowel syndrome.

Attributed her symptoms to irritable bowel syndrome.

Age at interview: 64
Sex: Female
Age at diagnosis: 59
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I had lost a lot of weight rather quickly and also my tummy had started to swell up because I'd got fluid in there, but of course I thought it was bowels and I'd had other bowel problems before and I thought it was kind of inflammatory stuff in the bowel. And so that losing weight and, and swelling tummy also, stupidly, didn't ring any bells with me or make me start to think that I had cancer.

 

Attributed her symptoms to bowel cancer.

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Attributed her symptoms to bowel cancer.

Age at interview: 65
Sex: Female
Age at diagnosis: 59
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Sometime in 1997, maybe even a bit in the year before, I had bowels symptoms, which I had had lots of times before, so I really didn't take much notice of them. But I did lose a lot of weight, and I didn't do anything about it, mainly I think because you're frightened. And I did think I had bowel cancer. So eventually, in about late June I went to see a - he's not a bowel consultant but I went to see him because he's a friend of mine - and he said, told me that it was, a gynaecological problem.
 

GPs sometimes suspected these causes, or appendicitis, inflammation or infection of the gut, gall bladder problems or weakened pelvic floor muscles, and treated the symptoms accordingly, sometimes for long periods before investigating them. GPs can find it difficult to judge when to arrange tests as they may see only a handful of cases of ovarian cancer during their career. As many of the symptoms of ovarian cancer involve the gut neither women nor GPs may consider a gynaecological cause.

 

Experienced prolonged treatment of symptoms before referral.

Experienced prolonged treatment of symptoms before referral.

Age at interview: 62
Sex: Female
Age at diagnosis: 61
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Yes, I started to feel unwell about four years ago, I had what I used to jokingly call terminal constipation. Very persistent constipation which I didn't seem to be able to do anything about, and in the end I consulted the GP about it and was given a long list of things like psyllium husk and linseed, to take away and use them as dietary additives, which I did. The constipation persisted but I persisted too, to manage it at home.  

I also complained of tiredness and I was given a battery of blood tests and was found to be lacking in thyroxine, which was also given to me to take regularly, and I started to have problems with my bladder, and having to go to the loo three or four times in a night and having to rush off during the day and go to the loo. And again I went back to the surgery with this and I was given some very helpful 'Help the Aged' leaflets, one called 'Incontinence' and the other one was called 'Laughter Without Tears', and they told me how to exercise my pelvic floor, which I went away and did.

So I went away and managed these symptoms, although they were very unpleasant and the tiredness was getting worse. I resigned from my part-time job because I just couldn't be active for a whole day any longer, but I didn't think that there was anything seriously wrong with me until summer last year, when the constipation suddenly changed to uncontrollable diarrhoea and I became very bloated. I had an umbilical hernia, problems with breathing. I was just so tired that after the first few hours in the morning I could really do very little at all. And I went to my GP and I think she suspected irritable bowel syndrome so she gave me a medication called mebeverine which I was to take before meals which would slow down the diarrhoea.

It didn't get any better and I was really feeling extremely unwell, I was absolutely enormous, I looked about seven months pregnant. I couldn't lay down in bed at night, and I went back to the GP again and she decided to refer me to the gastrointestinal unit, but she said I would have to wait some time because she didn't consider it was an urgent need, she thought it was just IBS.

 

A Doctor explains that it's difficult for GPs to recognise which women with symptoms have ovarian...

A Doctor explains that it's difficult for GPs to recognise which women with symptoms have ovarian...

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A large number of women who have ovarian cancer will have been to their GP several times over the previous months complaining of vague symptoms which could be irritable bowel syndrome, could be constipation, could be related to weight gain, could be related to all sorts of different things. Is there any way in which we can separate out those very small number of women from the much larger number of women with those other conditions? There is no way that has yet been devised. It is still extremely difficult for GPs to diagnose ovarian cancer, and the more we increase the GPs' awareness of ovarian cancer the more we run the risk of causing a great deal of anxiety amongst the large number of women who don't have the disease, and of making them have unnecessary investigations. It's very hard to decide where the balance lies.

I think the GPs are in a very, very difficult situation with ovarian cancer because it is a relatively uncommon cancer. The average General Practitioner will see just one, two or three women who have ovarian cancer during their entire career. So to expect them to be able to pick out ovarian cancer from the probably hundreds of other conditions which might cause similar symptoms is asking a great deal in general practice. 

I think we should do all we can to make GPs more aware of ovarian cancer as a cause of symptoms but we will probably never get away from the situation in which there are some delays in diagnosis. It really reflects the disease rather than any shortcomings of general practitioners.

 

Did not attribute her symptoms to anything serious or gynaecological.

Did not attribute her symptoms to anything serious or gynaecological.

Age at interview: 57
Sex: Female
Age at diagnosis: 56
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And I do feel, I mean the thing that worries me I suppose most about all of this is the fact that, you know, the business about not, the not even thinking about ovarian cancer. When I went to the doctor's, I can't understand why, but they say, I mean having read about it, I can understand now because having read about it, they say that it's, 'the silent killer' and they, and the symptoms mimic so many other things and all, you don't have hardly any symptoms at all and then it's too late, like it was with me, and whatever.

Because I mean, I really didn't have anything that you could, you know, call a symptom that you would be really worried about. I mean I did just have sort of the ordinary things that you expect to have at my age, you know, nothing to worry about, at all. And I do worry, and I worry about, obviously, I think about other people that, you know, you must go through, or will have to go through what I've gone through before, and there ought to be a way to find out before'  

Many women said that they went to see their GP because they were about to go on holiday, or because their partners, colleagues or family told them they should. Some women were angry that their GPs assumed that their symptoms were hormonal and had not investigated further. However, as one reflected, the symptoms were very vague and 'You don't go running to the doctor at the first sign of something'.

Some women said that they 'just knew' something was seriously wrong and their doctors referred them quickly. One said she just swelled up overnight and her doctor arranged a scan straight away. Others described how quickly their GP, or in some cases a practice nurse, had acted.

Some women presented with an abdominal lump which their doctor suspected was a cyst or fibroid. Such lumps require further investigation and possibly biopsy and/or surgical removal to confirm whether they are benign or malignant. Some women went into hospital as an emergency because their GP had not recognised that their condition was serious, or while they were waiting for investigations.

 

While waiting for blood test results had to go into hospital as an emergency with a blocked bowel.

While waiting for blood test results had to go into hospital as an emergency with a blocked bowel.

Age at interview: 61
Sex: Female
Age at diagnosis: 54
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Well I started to feel under the weather in about December 1996 and to have pain in my lower abdomen, and because it was a sort of pain that you get, like period pain, even though I wasn't having a period, I didn't really do a lot about it until we came back to school after Christmas and I was going to bed with a hot water bottle every night and thought 'this is, I can't, there must be something wrong, you know, I ought to do something about it". 

So I went to the doctor and I went three times to the doctor in the space of about three weeks and didn't feel that I was really getting anywhere and, you know, it was 'oh well it's possibly a grumbling appendix' or 'well it's possibly pelvic inflammation'or... And eventually I have to say that my professional life was in [town] so I wasn't, although I lived here, my professional life was in [town] and eventually the doctor there sent me for a blood test and said 'go home to [county], and rest and we'll see what happens to the blood test, but just go and rest". 

So I came home on the Thursday, and I was by then in quite a lot of pain and that was about the 25th January, and I went to bed when I came home and I didn't get up, and in the end my husband had the doctor come here to see me and I was taken in as an emergency with a blocked bowel.

In a few women who reported no symptoms, the disease was discovered during other medical investigations such as for infertility, or (very unusually) through cervical screening. The cervix is the neck of the womb and not near the ovaries. Cervical screening tests are not designed to detect ovarian abnormalities, and a normal cervical screening result does not exclude ovarian cancer. Neither is a pelvic examination (sometimes done at the same time as cervical screening) a reliable test for ovarian cancer.

 

Her cancer was discovered during infertility investigations.

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Her cancer was discovered during infertility investigations.

Age at interview: 38
Sex: Female
Age at diagnosis: 33
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Yep. Well, back I guess it must be in 1996, my husband and I had been trying to have children for about a year, maybe over a year actually. So at that point we decided to go and check things out with the GP. And my husband was looked at and, you know, obviously had a sample taken and everything was fine with him. So it seemed quite inevitable I thought that (laughs) there was something possibly wrong with me. 

I was referred by the GP in London to a specialist gynaecologist and, basically went through the sort of process of having some blood tests taken and 21-day progesterone, which everything seemed fairly normal so I was obviously ovulating, but you know, obviously not getting pregnant. 

So they decided to call me in to have a laparoscopy, which was done, must be back end of October '97, and, well I just remember waking up from the laparoscopy with about half a dozen doctors and nurses sat around my bed, and then they told me that they'd more or less abandoned the, what they were going to do with flushing fluids through the, with the Fallopian tubes and various other things, because they'd discovered a lump on my left ovary which they described as suspicious.

Since we interviewed these women NICE (National Institute for Health and Care Excellence - 2015) has given guidelines to GPs suggesting they should arrange an urgent appointment (within two weeks) with a specialist in ovarian diseases (a gynaecologist) for any woman who comes with fluid (ascites) or a lump in the pelvis (unless your GP is sure that it is a lump called a fibroid in the womb; fibroids are not cancer and do not need an urgent referral).

The guidelines also recommend that GPs carry out tests if you are over 50 and have any of the following symptoms on a persistent basis: bloating or swelling of the abdomen, feeling full and/or loss of appetite, pelvic or abdominal pain, or increased urinary urgency and/or frequency.

These problems can have other causes apart from cancer, and your GP should discuss these with you.

Last reviewed June 2016.

Last updated June 2016.


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