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…
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.
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…
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.
Got Ovacomes newsletter but didn’t want to read the stories of women who hadn’t survived,…
Women diagnosed many years ago had noticed that more information is provided now and professionals seem more willing to share information with patients.