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Ovarian Cancer

Learning the diagnosis of ovarian cancer

Women with ovarian cancer are usually told their diagnosis by a consultant. It is based on the results of blood tests and scans or laboratory analysis of lumps or cysts removed during an operation (see 'Tests and investigations'). Many women we talked to had known little about ovarian cancer and some were taken completely by surprise; some were convinced that they were being investigated for something else. Some women had been reassured by their doctors that there was nothing to worry about, but others had been warned before their tests or surgery that their condition might be serious, possibly cancer, or had come to realise the likely diagnosis themselves.

 

Did not expect her diagnosis, which she was told after a scan.

Did not expect her diagnosis, which she was told after a scan.

Age at interview: 65
Sex: Female
Age at diagnosis: 59
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Towards the end of 1996 I was feeling a little unwell and I had noticed that I had a lump towards the bottom of my abdomen. Didn't do much about it until January when I went to the doctor's and he diagnosed it as being fibroids. So fine, okay, I had to wait to see the consultant. Towards the end of March, in fact it was the Tuesday before Easter in March 1997 that I woke up in what I can only describe as horrific pain. I rang the doctor; he came straight away and bundled me off to hospital to the Accident and Emergency.  

Whilst I was there I had to go down and have x-rays and a scan, and then they asked me if they could send for my husband. By then it was after lunchtime, my husband was away, away from where he worked at the time in [town] and they had to send for him and it was about 4 o'clock when he arrived at the hospital. I was left in Casualty, still thinking it was fibroids. When my husband arrived the A&E consultant sat him down, sat on the edge of my trolley and said that I had cancer.  

 

Was warned that she might have cancer, which the operation confirmed.

Was warned that she might have cancer, which the operation confirmed.

Age at interview: 51
Sex: Female
Age at diagnosis: 48
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I went to see the gynaecologist the following week, he did an internal examination and poked my tummy about, and said that, it could be fibroids but he thought it was more serious, and that he wanted me in' that was on the Tuesday' he wanted me in on the Thursday for a hysterectomy, which was all a bit sudden. But I was in quite a lot of pain so in a way I was quite glad. He did mention the word 'cancer' at the time, but I had already sort of thought in my mind that that was probably the worst outcome it could be.

So I went in on the Thursday, had my hysterectomy, was really ill afterwards because I don't take anaesthetics very well, and about three days after I had the operation, they came and told me that it was ovarian cancer. Very matter-of-factly just stood at the end of the bed and told me, which was a bit of a shock. 

One woman realised that her diagnosis was serious because six people visited her to talk to her after her surgery. Another overheard her partner telling someone on the phone about her diagnosis while she was semi-conscious after her operation.

 

Thought her diagnosis was serious because so many health professionals came to her bedside after...

Thought her diagnosis was serious because so many health professionals came to her bedside after...

Age at interview: 57
Sex: Female
Age at diagnosis: 56
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I was, I hadn't really considered that I'd have anything else wrong with me apart from the fibroids because of the, he'd said to me that there wasn't any evidence of anything else. He hadn't sort of even suggested there might be. And so the, the morning after I had my hysterectomy I was horrified to have these 6 people come into my room and stand at the end of the bed and actually tell me that I'd got stage 3 ovarian cancer.  

There was a, a doctor and, you know, a couple of nurses and, and somebody who'd helped with the operation, and various sort of others, 6 of them altogether. So I mean, I knew when they all trooped in that there was something wrong because you don't get 6 people visit you the day after your operation.  

 

Overheard her partner telling someone else the diagnosis while she was still semi-conscious after...

Overheard her partner telling someone else the diagnosis while she was still semi-conscious after...

Age at interview: 38
Sex: Female
Age at diagnosis: 32
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And in fact when I, the way in which I found out was, I was back in my hospital room and my partner was on the phone and I think he probably thought I was still absolutely out for the count but, you know, I was conscious, and he told somebody else on the phone but I didn't really mind because I think the morphine was, was very effective. And so when he came to tell me I already knew what had happened. Much to his horror. 

So he knew before you did?

Yeah. Yeah.

At what stage did the doctors come round to tell you?

They came that day but I don't really, I mean that day was kind of, it was a bit of a blur.  

Some women were sent home from hospital before being told their diagnosis. One such woman received a phone message asking her to ring the consultant at the hospital, and realised that she was likely to get bad news. Another discovered her diagnosis accidentally while visiting her GP about another problem.

 

Was asked to phone the hospital to receive her results and realised then that there was a problem.

Was asked to phone the hospital to receive her results and realised then that there was a problem.

Age at interview: 47
Sex: Female
Age at diagnosis: 35
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Oh well, what happened was they said 'we will write to you, we'll write to your doctor and let him know. There shouldn't be any problem with it, you should know within the next 2 or 3 weeks. Everything will be fine, we're convinced'. 'We're convinced'. And then on a Friday evening in late February there was a message on my answer-phone which was 'can you please call the doctor as soon as you get in'. As it was Friday evening, I couldn't, it was too late. And I knew then, because they don't leave you messages to call doctors unless there's a problem, and there was. I phoned and yes it was malignant, it was cancerous. That's how I knew. I mean I knew over the weekend. I knew before I was even told.

 

Found out her diagnosis accidentally when visiting her GP for another problem.

Found out her diagnosis accidentally when visiting her GP for another problem.

Age at interview: 50
Sex: Female
Age at diagnosis: 47
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So they booked me for a hysterectomy. So I went in in October, had a full hysterectomy, came home, getting over that, had to see the specialist in about 6 weeks after the operation. I mean hysterectomies are not very pleasant and they do do a lot to your emotions and everything.  

So I had a little bladder problem, went down to the doctor's and went in to see him. I said, 'He said. 'How are you feeling?' I said, 'Well, you know, pretty rough but I'm getting over it'. And he said, 'Have you seen your specialist yet?' I said, 'Well I'm going next week'. He said, 'Oh is he going to discuss your treatment with you?' I said, 'What my HRT?' He said, 'No, your chemotherapy'. I said, 'Pardon?' He said, 'Hasn't he told you?' I said, 'What?' He said, 'They found a tumour in your ovaries, he'll be discussing chemotherapy with you'.  

Oh well, that was like somebody hitting me, you know, I'd just nipped down to the doctor's about a bladder problem, you know.  

Some women worked out the diagnosis for themselves, or that it was serious, before being told. For instance, the urgency with which tests or operations were arranged suggested to some women that the condition must be serious. Similarly, other women guessed they had cancer by what doctors or health professionals said or didn't say, or from the way they behaved towards them. Some who were given a report of their test results to take to their consultant or GP learnt the diagnosis simply by reading the report.

 

Guessed the diagnosis was serious from the speed at which things happened at the hospital.

Guessed the diagnosis was serious from the speed at which things happened at the hospital.

Age at interview: 44
Sex: Female
Age at diagnosis: 41
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And I had the scan appointment and by the time I got home from the hospital, which is only about forty minutes away, the doctors had rung, my GP had rung and said I needed to go and see him urgently. And at this stage I think the alarm bells were ringing because, never having had much to do with doctors and hospitals, I knew that things didn't work that quickly unless there was a problem.  

I went to the doctor's and he had received the scan report via a fax from the hospital, and that I needed to see a gynaecologist urgently. No details were given to me as, you know, what was found on the scan, other than that there was a large mass.  Even though I asked the doctor, you know, 'could it be something to worry about?' he wasn't going to tell me anything.

The day after, I received a phone call from the hospital, and ten days later I saw a gynaecologist, in fact I saw two gynaecologists, and they scheduled a hysterectomy for two weeks after. Again, nobody was telling me, you know, if there was anything to worry about, but common sense would tell you that, again, things don't work that quickly unless there was a problem.

 

Guessed her diagnosis was serious from what the ultrasonographer said, and her urgency to give...

Guessed her diagnosis was serious from what the ultrasonographer said, and her urgency to give...

Age at interview: 41
Sex: Female
Age at diagnosis: 40
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A week after having seen the female GP I had an ultrasound scan. My appointment time was 5 o'clock in the evening. Both my husband and my mum had offered to come with me and I'd said "Oh no I'll be fine because I have to go back to the GP for the results." And I'd already made that appointment to see the GP the following Tuesday, which was six days later.  

Had the ultrasound and as she was doing it I just got this impression that things weren't going quite as well. She kept sort of going back over areas and things. Anyway she finished her examination and said, asked me when I was going to see my GP. I said "Oh six days time," she said "Well I think it would be a good idea if you see him before the weekend." So I said "Fine." And then she said "Well actually can I have his number because I'm going to speak to him now," this was quarter to 6 in the evening. So I said "So it's not a fibroid then?" and she said "No all I can tell you is that we've found a mass about the size of a grapefruit," and words to the effect of "even if it's something nasty we're very good at keeping people alive these days," which sort of sent alarm bells ringing.  

The GP said he would see us the following morning after morning surgery, and I must say it felt quite a long night that night, didn't sleep very much. I think partly it was because the ultrasonographer couldn't legally tell us what was wrong so, you know, it has to be done by a doctor. And obviously at the back of our minds was 'well is he going to tell us in the morning that I've got cancer?' But it was the not knowing that was worse.  

 

Guessed her diagnosis from what the gynaecologist said.

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Guessed her diagnosis from what the gynaecologist said.

Age at interview: 62
Sex: Female
Age at diagnosis: 60
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But when I went to the gyno he said 'Well I'm going to remove this cyst, of course I may need to do a full hysterectomy'. And I said, 'Why should you? I don't want you to do that.' And he said 'Supposing I find that there are other problems? I can't wake you up to sign the consent form, you'd better do it now'. So I said 'yes but why do you need to, why do you think there'll be a problem?' He said 'there could problems, and then of course you'll need treatment afterwards', and I thought 'Oh my God, it's cancer'. I was in a state of complete shock.

 

Realised what her diagnosis was after reading the ultrasound report.

Realised what her diagnosis was after reading the ultrasound report.

Age at interview: 53
Sex: Female
Age at diagnosis: 52
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So they whipped you into hospital and gave you a complete hysterectomy, and at what point did they give you the diagnosis?

Well I have to say that I knew, I knew as soon as I had had the ultrasound because I was in with the radiographer and he was doing the ultrasound and I could see this huge mass on the screen and he gave me the report to take it straight to the doctor and it said 'papillatory projections, pathology required'. And so when I took it into the doctor, realised the speed of everything.

That night at home I just had kind of like one of those 'aha' moments where I kind of woke up bolt upright in bed and said 'oh my God I've got ovarian cancer'. So it happened in such kind of a lightening-bolt thing. So I ran downstairs and grabbed all of my books that might have something relating to that and read everything I could and, you know, I knew then, and after that time of course the doctors say 'well we have to do the pathology reports before we know exactly' but even when I was in the hospital after I'd had the radical hysterectomy, you know, I pretty much knew that it was ovarian cancer and then they kind of just confirmed that.

Women also picked up clues from what health professionals said to them and used these clues to search for information about their illness on the internet, before their consultant confirmed it.

 

Worked out what her diagnosis was by searching the internet for words used by the health...

Worked out what her diagnosis was by searching the internet for words used by the health...

Age at interview: 62
Sex: Female
Age at diagnosis: 61
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The next day I had an ultrasound test and the radiographer said 'you've got a lot of fluid there' and I said 'yes I know, I've been saying this for some time', and she said 'it's called 'ascites''. This was the first I'd ever heard of this word and when I got home I went through Google and looked it up, and by a process of elimination I realised that whatever I had was malignant because none of the other things could possibly apply to me.

I spoke to my nephew on the phone, who is a surgeon, and he said 'if you have ascites then really you have some, a very serious complaint and they should be doing something about it now' and he suggested that I phone the consultant.  

Anyway I had a phone call back about two hours later from the senior registrar saying that she'd had a look at the scan results and that it was an ovary, she'd cancelled the other tests and she had made an appointment for me with a gynaecologist for a couple of days time.

I now had another word to put into Google, which was 'ovary', so when I got home I put in 'ascites' and 'ovary' and every website I came up with said 'ovarian cancer stage 3C'. And I went to see the gynaecologist and he confirmed this, he said 'it is ovarian cancer' and I said, 'what stage?' And he said '3C'.

Some women praised their doctors for the way in which they broke the bad news. One thought her consultant clever for having told her first when she was semi-conscious after her operation, so that when he told her again when she was conscious she had already absorbed the news. Another felt her consultant had presented her diagnosis to her in a very positive light. However, in other cases the diagnosis could have been delivered more sensitively or at a more appropriate time and place. Many stressed the importance of receiving the diagnosis in private, and having a partner or friend present. Friends and partners could give moral support, suggest questions and help the woman to recall the details of a discussion that was often remembered in a 'blur' (see 'Communication with health professionals').

 

Felt her diagnosis was delivered insensitively.

Felt her diagnosis was delivered insensitively.

Age at interview: 49
Sex: Female
Age at diagnosis: 48
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I went with my partner to see the doctor 2 days later and he told me that I did actually have ovarian cancer. Which I think by then we'd kind of worked out, that it was going to be something like that. And obviously we were both very upset at the time. We then went to see the consultant at the hospital. He was a consultant gynae - cology oncologist and whereas my GP had been very sympathetic and given us lots of time, he thought he was just going to deliver the diagnosis and leave the room.

And we had to work very hard to keep him in the room to answer our questions. He also answered the phone twice in the middle of telling me that I had advanced ovarian cancer. So I wasn't very happy with that.

 

Felt her diagnosis could have been delivered at a better time and place.

Felt her diagnosis could have been delivered at a better time and place.

Age at interview: 41
Sex: Female
Age at diagnosis: 35
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I think the only thing that I would, thought could have been handled maybe slightly more sensitively was the way I was told my diagnosis. I was told, obviously the curtains were drawn round my bed, I was told in the ward by the consultant. I mean, I know I had taken things all very matter of factly but, that was hard because obviously it's not a private place, there are other people round about. And I seem to recall the only time that I ever thought, 'Why me?' was when the lady in the next bed was being told that, 'It's all right dear, it was just fibroids' and I think that could have been handled a bit better. I think people could have been taken away out of the ward to be told the results and I found that upsetting. But I think all the professionals I've been involved with have been first rate, very busy people, first rate.

Were you alone when they gave you the diagnosis?

I was yes. My husband was working away from home. We didn't know when I was going to be told the diagnosis, it was just part of the ward round, so there was no forewarning that I needed somebody to be with me.  



Last reviewed June 2016.
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