Cervical Cancer
Finding information about cervical cancer and decision making
Finding sufficient information about their illness and treatments can be bewildering for people 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 while others said they could 'only cope with basic information'. A few wanted to have information given 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 about recovery after a hysterectomy.
She asked her doctors questions about the side effects of treatments.
She asked her doctors questions about the side effects of treatments.
Comments that patients should be given more information by their doctors.
Comments that patients should be given more information by their doctors.
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.
She would have liked more information about how her hysterectomy would affect her sex life.
She would have liked more information about how her hysterectomy would affect her sex life.
Describes her feelings when she was not given information that her radiotherapy would cause a premature menopause.
Describes her feelings when she was not given information that her radiotherapy would cause a premature menopause.
It's the only thing that I really regret in the whole therapy, all what happened to me. That not the complete information was given to me. Okay I was asked "Do you want more children, would you want children?" to which I said no. And the thought in my mind it implied that I would be sterile after the therapy, it never occurred to me that I would be menopausal. And I felt, suddenly at 43 I felt an old woman, like that was again my idea, a chicken that had been, a dead chicken had been emptied from all its guts, so there was nothing inside me, left inside me which is completely the wrong idea because everything is inside me, even if it's not working. It's not the fact I can't have children it's not the fact that I was in menopause it's just it was exactly the fact I hadn't been told. All through the problem from the first letter saying that there is abnormal cells to the end of the, last week when they told me you were off, you are discharged from the clinic, you don't need us any more I always accepted, whatever was done to me I always accepted that because I don't know anything about medicine but I have, I trusted the people that they were taking care of me. And only that thing that they did without telling me.
Many found it helpful to take a list of questions to their appointments. Suggestions of the questions people can ask their doctors are available on 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 (see 'Resources and Information' for more information about these resources).
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 (see also ‘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 (now closed) to get a second opinion about her ongoing post-operative pain from a team of medical experts.
Another found it helpful to contact Jo's Cervical Cancer Trust (now closed) 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, hormone replacement therapy (HRT), and menopause. One wanted to know the medical facts about her illness and had read medical textbooks to learn about her cancer and treatment options.
Some had found the internet a good source of information. One woman explained that the information she found on the internet about her planned hysterectomy had reassured her.
Another young woman had learned about cryo-ovarian preservation and was then able to talk to her doctors about it (see ‘Fertility and cervical cancer’ for more information).
A few said they had felt 'bombarded' with information which they could not understand or had found difficult to read.
She found the Internet useful to find information about her planned hysterectomy.
She found the Internet useful to find information about her planned hysterectomy.
She read about cryo-ovarian preservation on the Internet and was able to talk to her doctors about it having it done before her treatment started.
She read about cryo-ovarian preservation on the Internet and was able to talk to her doctors about it having it done before her treatment started.
I forgot to tell you about my ovarian operation as well actually. I forgot to tell you about that. Basically my Mum because she's great and looking at all these internet sites she read about having ovarian tissue, basically cryo ovarian preservation, it's quite new. And so I had read about it, since my Mum had found this information and when I went to the hospital I discussed it with them. And actually they were a bit dismissive about it to be honest and it certainly wasn't something they would have offered me had I not brought it up. And they said "Well you can't have it done here but you can have it done at another hospital." So I phoned up the other hospital myself, made an appointment and went into go and see this woman and she said to me "Yes you can have it done," and she said "There is, no children have been born as a result of this." But what they do is they take out a portion of either one ovary or both ovaries and this ovarian tissue is then frozen over a period of 6 hours by an embryologist and obviously stored in special little tanks. And the hope is that they will shortly be able to either defrost this ovarian tissue and implant it back in to the person it's been taken out of and thereby either kick start it with hormones so that it will start producing hormones all by itself and then start producing eggs which can then be removed from the ovary and fertilised and be implanted into a surrogate mother. Because if you've had this radiotherapy treatment you're told that your womb will never be able to carry a child so you'd have to use a surrogate. Or else to be able to defrost the tissue and in a sort of petri dish, or a test tube or whatever and then stimulate it to produce eggs which can then be fertilised and implanted in a surrogate mother. So that's what I was told the hope was going to be for.
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 while 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 explained 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 described how she decided to have her ovaries removed during her hysterectomy. A third woman, 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.
Explains how she relied on her consultant to help her decide whether to have her ovaries removed during her hysterectomy.
Explains how she relied on her consultant to help her decide whether to have her ovaries removed during her hysterectomy.
That was one of the other things he sort of left in my court, he said 'Now,' I was 40 at the time and he said 'Now if you were a couple of years younger I would recommend you kept your ovaries because there's not a direct threat because the blood line to the ovaries isn't the same as it is to the cervix, so there isn't that connection there.' He said 'And if you were a couple of years older I'd say definitely take them out because you're not gonna have many more years worth of your own hormones.' But he said 'You're sort of a funny age where you're in the middle so I must leave it up to you, you know, to whether you want me to take them out or not.' I didn't have a clue you know, I didn't know. I said 'I know you was leaving it with me but what would you do?' He said 'Well,' I said 'Well, if I was your wife what would you say?' you know, he said 'Well I would take them out,' he said 'if it was if that was the case.' So I went again, I went along with what he said and had them taken out.
For more resources and information for cervical cancer see ‘Resources and Information’.
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