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Ovarian Cancer

Knowledge & Information

Most women had known nothing about ovarian cancer before having it themselves, and even those who were trained nurses were surprised how little they knew about it. Many women were dismayed by the lack of information publicly available about ovarian cancer symptoms compared to those of breast cancer, which all women were urged to look out for. Few had known of anyone else who had had ovarian cancer. Some women believed (wrongly) that cervical screening could also detect ovarian cancer (see 'Symptoms').

 

Anger that women weren't better informed about ovarian cancer symptoms made her try to raise...

Anger that women weren't better informed about ovarian cancer symptoms made her try to raise...

Age at interview: 44
Sex: Female
Age at diagnosis: 41
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Apart from being angry, I think I was quite angry, I wasn't angry at anybody in particular, apart from myself, but I was angry at the lack of information of the symptoms of ovarian cancer, the lack of knowledge that I had, as a female, I thought I should have known about these things. I knew that if you had a lump in your breast you went to your doctor's, but I didn't know if you had these symptoms, you know, that you should perhaps persevere, and if I'd had a scan earlier maybe things could have been caught earlier. However, I think you know, the anger, since has inspired me to do many things.

And here I am, nearly two years later, praise God I'm still well and I'm, you know, trying to make an effort to raise awareness of ovarian cancer to deal with this anger that I still have to a certain extent and I, you know, tell, I'm probably quite boring actually, I talk to a lot of, you know, women obviously, and men to a certain extent, but of my age and younger, and try and educate people. Because I think I did, well I do believe I'm quite a well informed person, and I, you know, I'm not surprised when I talk to people that they're quite as ignorant, and I think that helps me overcome my anger with myself, but it still doesn't stop me being angry at the lack of information available, you know, generally about ovarian cancer.  

Doctors and nurses are often uncertain how much information to give people about their illness - some want more than others. Some women said their doctors had explained things well, but others had got information only if they asked direct questions (see 'Communication with health professionals'). Several women recommended taking a list of questions for their doctors and nurses. However, early on when everything is strange and alarming, it can be hard to know what to ask and women often rely on doctors and nurses to point them in the right direction. Partners or friends accompanying women to hospital appointments could sometimes ask questions that women didn't think of, or feel able, to ask themselves. A woman who didn't fully understand what she was being told asked her oncologist to repeat it to a relative who was a dentist who then explained it to her again.

Some women were given leaflets about their illness and its treatment or could get them from hospital cancer information centres or cancer support charities. Information centres and helplines were particularly appreciated because the staff had the time to answer questions. However, others were given no written information to take home, where they could concentrate better, re-read it as many times as they needed to, and give it to their carers to read. 

 

Found it easier to take in information when at home and asked her husband to read information too.

Found it easier to take in information when at home and asked her husband to read information too.

Age at interview: 52
Sex: Female
Age at diagnosis: 50
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You seem to have been relatively well provided with information.

Yes.

Do you feel you had enough information?

I think I did. What I would say is, I had the information, quite a lot of information, more so than my mum did, I feel, and as I say, she was diagnosed in [town], but in my particular part of the world, I feel I was catered for. All I would say is that it didn't automatically mean a lot, because I would read it and not take it in, because of the state of mind at the time, you know, so it was good when I was calmer, you know, when someone else' I got my husband to read everything, so that he could point out things to me that, perhaps, had gone completely over my head, or, you know, I wasn't taking in for whatever reason, because I was so' well' I don't know quite what the word is, but' not coping that day, sort of thing. So, yes, the information was there, but it seems, as well, like you can never have too much.  

Women needed information at different times - one suggested that people should be given a comprehensive information pack after the diagnosis. Others don't want to know much during treatment but later find they need to understand what has happened to them. A woman in remission arranged to meet her oncologist to read through her hospital notes to understand more about the medical facts of her case. Women who were treated privately were sometimes given copies of their pathology reports and other paperwork, but one who was treated in a non-specialist private facility had missed out on cancer information.

Being told she had cancer so frightened one woman that she refused any written information. Some were satisfied with the amount of information they were given, others wanted more and sought it out themselves or with the help of family or friends. Women wanted both facts about their illness and to find out how other women coped emotionally. 

Women who searched for information obtained it from hospital information centres, libraries, books, newspapers, magazines, other patients, the internet, and cancer support charities such as Macmillan Cancer Support and Ovacome (see 'Resources' section). Some became very knowledgeable about ovarian cancer. They found information about the nature of the illness, its diagnosis and treatment, research, complementary therapies and sources of practical and emotional support. Some were wary of the reliability and sheer volume of information on the internet. Stories about research on new treatments could also give people unrealistic expectations of what might be possible.

A couple of women found internet chat rooms where they could talk to other women with ovarian cancer. Some women used the internet to find out what their symptoms might mean before they were diagnosed (see 'Learning the diagnosis'). One woman we spoke to was suspected as having a rare cancer called primary peritoneal cancer, which shares the same symptoms, treatment and prognosis as ovarian cancer. When she searched for information about it she found only internet sites about another cancer with a similar name and a much worse prognosis.

 

Sought information and visited internet chat rooms where she could contact other women with...

Sought information and visited internet chat rooms where she could contact other women with...

Age at interview: 57
Sex: Female
Age at diagnosis: 52
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So did you seek out lots of information after your diagnosis, did you seek out lots of information for yourself?

Did I seek it out? Yes I did, in fact we hadn't got a computer, my husband went and bought a computer so that I could find out as much as possible. And in the middle of the night when you haven't had cancer for a long time, night time can be very dark, and it was a time when I also went in the chat rooms, I looked up information and I also went in the cancer chat rooms and talked to other people and found only one or two people with ovarian cancer but we did build up relationships and I was going to see one of them in New York and she died the month before I went, unfortunately, but, you know, we had a lot of quality time even in the chat room together.

Some women lapped up as much information about ovarian cancer as they could, but didn't understand all the medical information they found. Others were more selective because they did not want to be depressed by gloomy survival statistics or stories of women who had died. Some women whose disease was diagnosed early said that little of the information they found applied to them. Several noted that survival rates are probably much better now, with new treatments.

Women were sometimes given unwelcome information or inappropriate lifestyle advice by friends, colleagues or even strangers.

 

Wanted to find out everything possible about ovarian cancer and used many sources.

Wanted to find out everything possible about ovarian cancer and used many sources.

Age at interview: 33
Sex: Female
Age at diagnosis: 30
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Going through the kind of cancer journey early on and things, I spoke about the cancer nurses being very very supportive, but I was a fiend for information. I needed to know everything. I was on the Internet, borrowing, buying, whatever, books, reading things that people passed on to me, and I was introduced to a cancer support group in my local town which I started going to, and I still go to.

But what I also started doing was going to this place called CLAN which is Cancer Link Aberdeen North, and basically CLAN had a fantastic library, it had a librarian that would help you with internet sites. It had every kind of bit of information, booklet on cancer of any description. All books about different kinds of complementary therapies, it had all the information about, you know, foods to eat etc.,

 

Got Ovacome's newsletter but didn't want to read the stories of women who hadn't survived,...

Got Ovacome's newsletter but didn't want to read the stories of women who hadn't survived,...

Age at interview: 65
Sex: Female
Age at diagnosis: 62
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You mentioned to me earlier that you had the Ovacome newsletter. How did you find out about them?

That was in the hospital, the cancer section, there's a little section in there for people to wander in and you ask, you know, you say what your problem is and they point you into 'well perhaps you'd like to read this'. And I didn't subscribe to it I didn't, I don't have it every month or anything, I just collected it at the hospital and they would say 'well if you bring it back next time you come'. So I just read about various, people's various way they'd been diagnosed, how they'd been treated, but I didn't feel I needed to have it every week. Every month rather. So I just read it when I was at the hospital.  

Did you find that helpful?  

Bit frightening really because I was reading of people, that was talking of people that had died and, you know, had had it two or three years, and so I found it, you know, I didn't really want to go down that road, I wanted the positive things, which I found that I could do that myself. I didn't really want to know about people that hadn't survived, so yeah I was a bit cowardly that way.

Women diagnosed many years ago had noticed that more information is provided now and professionals seem more willing to share information with patients.

 

Since she was diagnosed has noticed there is more information and health professionals seem more...

Since she was diagnosed has noticed there is more information and health professionals seem more...

Age at interview: 58
Sex: Female
Age at diagnosis: 49
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When I first had, you know, the ten years previously, you didn't ask questions because it wasn't the thing to do, you know, and you were told. My oncologist was a charming man, a lovely lovely man but he explained it all to me but I really wasn't, I didn't know enough about it and you didn't really ask about it, you know, you asked one or two questions but you really didn't go any further, so I didn't learn enough about it I must admit.

Now I must say now, they sent me to see the oncology nurses and there is a whole, it was like a whole new life opening up because there I've got these wonderful nurses who knew so much about it, which I had nothing like this ten years ago, I was so in the dark I really didn't know what it was all about, I didn't know what oncology was, I didn't know what the drugs were, there was no internet, nothing to look up, you couldn't find out very little and you were in awe of the oncol, you know, these doctors, you just didn't ask them, you asked the nurses and it was, they really didn't know enough to tell you, you just had to know how your reaction was, you may get this, you may get that.

Here suddenly there was leaflets galore, booklets galore with Cancerbackup, you've got a phone call you can phone anytime you're not sure, they were superb.  


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Last reviewed June 2016.

Last updated December 2009.

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