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.

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.

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, hed 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.

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.

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 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.

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;

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 well 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.