Cervical Cancer

Finding information about cervical cancer and decision making

Finding sufficient information about their illness and treatments can be bewildering for patients if they do not know what questions to ask, where to find information or they don't understand the medical language used. We found that some women wanted to find out as much information as possible, others found they could only cope with basic information. A few wanted to have information in stages.

Many mentioned that the information given to them by their doctors and nurses had been very helpful. However, some said they had to ask questions because this information wasn't always freely given. One woman felt she wasn't given enough information from her doctors. A few would have liked more specific information for cancer patients about recovery after a hysterectomy.

Some who were not given enough information about potential side effects of their treatments said they would have liked to have known more. In contrast, another who felt she was given sufficient information about bowel and bladder problems after a hysterectomy said it had helped her to know what to expect.

Many found it helpful to take a list of questions to their appointments. Suggestions of the questions patients can ask their doctors are available on the Cancer Research UK's website. One woman had found it helpful to talk to Cancerbackup nurses (now merged with Macmillan Cancer Support) about her questions before her appointment with her consultant.

National organisations and books specifically about cervical cancer have increased in recent years but there are less than for other types of cancers. Some women contacted national cancer organisations, such as Macmillan Cancer Support, and said they got very good information about cervical cancer, treatments and talking to children. A few felt the information leaflets did not tell them all they would have liked to have known about possible side effects of lymphoedema after surgery.

One woman found it useful contacting Jo's Cervical Cancer Trust to get a second opinion from a team of medical experts about her ongoing post-operative pain. Another had found it helpful to contact Jo's Cervical Cancer Trust for information shortly after she was told her diagnosis. A few had contacted other organisations such as the Lymphoedema Support Network and the Hysterectomy Association. 

Several had found it helpful to read books or newspaper articles about cancer, women's health, hysterectomy, HRT and the menopause. One wanted to know the medical facts about her illness and had read medical text books to learn about her cancer and treatment options.

Some had found the Internet a good source of information. One woman explains that the information she found on the Internet about her planned hysterectomy had reassured her. Another young woman had learned about cryo-ovarian preservation from the Internet and was then able to talk to her doctors about it. A few had felt bombarded with information which they could not understand or had found difficult to read.

Many said they had found it reassuring talking to other women who had cancer about their experiences.

Several women were involved in their treatment decisions. Others preferred to rely on the judgement of their doctors. After being offered a radical trachelectomy by her consultant, one woman who wanted to have children explains how she made a decision to have a trachelectomy (where the womb (uterus) is left in place so it’s still possible to have a baby).

Another describes how she decided to have her ovaries removed during her hysterectomy. A third who was diagnosed with advanced cancer and given a poor chance of survival sought a second opinion with another consultant to ask about her treatment options.

Last reviewed July 2017.

Last updated July 2017.

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