Breast Cancer in women

Finding information about breast cancer

Many women knew little or nothing about breast cancer before their own diagnosis, though women who worked in the health field or had a family history of breast cancer, had varying amounts of knowledge. Most women said that they received enough information from doctors, a few women saying that information about treatment was written down or recorded for them.

Breast care nurses were the most important sources of medical information for many women, as well as for reassurance about the emotional impacts. Some women said that they trusted the health care professionals, who cared for them and did not want or seek out more information.

Others, however, explained that they were not given enough information, or wanted specific information, e.g. on lymphoedema.

Some women explained that, when first diagnosed, there was only a certain amount of information they wanted or could manage. Some were wary or afraid of reading the information they were given, and one woman explained how she found more information after the initial shock of the diagnosis.

Some women described how they initially looked up as much information as possible but later read only what they needed. Many discussed reading leaflets and booklets produced by cancer charities and self-help groups.

A few women said they had found books helpful, while others used the internet to find more information. Many of them praised the information available on the internet, and one woman described setting up her own website on inflammatory breast cancer. Another explained making treatment decisions after using the internet. Internet forums were also important, especially for women who wanted to read or hear more about the experiences of others.

Describes how she learned about an investigation which could affect the treatment she was given.

Some of the women we interviewed questioned the accuracy of the information available on the internet. Several women felt that, while there is a lot of information on breast cancer, much of it deals with the medical rather than the emotional side of the disease. Some of these women wanted to know more about the emotional impacts, and the personal experiences of others.

Some women praised the support and information they had received from patients or friends who had experienced breast cancer (see 'Support groups'). Others had received information from family members. One of these women explained that her only language was Punjabi and she relied completely on her children for information and translation.

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One women explained how reading leaflets had taken away some of the fears she had had about treatments, and some women recommended finding out as much information as possible in order to gain knowledge and reduce fear.

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Last reviewed August 2018.
Last updated August 2018.

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