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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.

 

She asked her doctors questions about the side effects of treatments.

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Age at interview: 53
Sex: Female
Age at diagnosis: 51
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As I say I think they were pretty good at explaining things, the doctor, the senior registrar was very good when he explained all the different things that could go wrong and I said "Do you always tell people this," and he said "No people don't normally ask." I thought that was interesting because I can see why they wouldn't want to give people horror stories but at the same time I think people do generally like to be aware of things and with many people I think that if they explained or if they said there are potential risks with this operation. Obviously the biggest risk is if you don't have the operation you're going to die but if you talk about the potential risk I think most people that I know anyway, certainly women, and most of the people that I know would rather know. I wanted to know what the probability was of anything happening, I just felt I needed to be aware of that.
 

Comments that patients should be given more information by their doctors.

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Age at interview: 46
Sex: Female
Age at diagnosis: 46
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You know they should give me information and also like I said to you before that day they diagnosed me, they they must know they diagnosed me, I mean they must know that cancer is cancer, it does scare a lot of people, they must know that from their experience, they must. So they should at least ring you or follow it up, not the same day but the day [after] someone should follow it up to say 'Look you know, we heard you've been diagnosed with cervical cancer and we would like to help you, just give you a bit more information about that, you know, this and that and we will be on the other line if you need something'' Just that little thing instead of being left in the cold really and you have to fend for yourself and look for information yourself.

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.

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Age at interview: 53
Sex: Female
Age at diagnosis: 51
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On one of the appointments, when I went up to have the bowel and bladder investigation a nurse came to see me and asked if I had an other queries or problems. I explained that I was worried about the lymphoedema thing. I also had begun then to worry about our sex life and whether we would be able to continue to have a sex life and in what way it might affect things. She did explain that to an extent. I feel now 13, 15 months down the line that I would've liked perhaps more discussion of that, for somebody to really explain more to me about the fact that they shorten the vagina quite considerably and that in the early stages sex might be very difficult but that it does get a lot better and that everything does go back to normal, almost to normal as it were. So I feel now with hindsight that that could've been done better. But I suppose it is a delicate area and I suppose one would have to initiate it oneself possibly because a nurse might not know how open you might be about talking about your sex life and about sex and so on. It did worry me because we have a good relationship, we've been together for a very long time, but sex is till something that's quite important to both of us, and I felt that I wanted to know what was going to happen. So that, yeah with hindsight I think that could've been done a bit better.

 

Describes her feelings when she was not given information that her radiotherapy would cause a...

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Age at interview: 53
Sex: Female
Age at diagnosis: 42
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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 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. 

 
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She found Jo's Cervical Cancer Trust helpful to get advice about her ongoing post-operative pain.

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Age at interview: 49
Sex: Female
Age at diagnosis: 41
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I did actually use it in relation to my pain problems, just out of interest really, but obviously the main thing was it's so long now that there's really nothing else they can advise that I haven't already looked in to but they gave me a very reasoned thought out carefully considered answer. I think it was just one of them replied, she sent it to two experts. I think the first one probably did such a good job. He'd obviously put a lot of thought into replying to me. I'm sure, especially I would've used it if I had just been diagnosed if it had been available then, definitely and they've got a bulletin board thing that people can put up questions and correspond with each other if we want to. There some very sort of moving ones I've seen on there, very young people who are very worried about just having had an abnormal smear or something like that, hopefully getting some reassurance from it. And of course it's world wide being the internet, everybody's got access to it.

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.

 

She found the Internet useful to find information about her planned hysterectomy.

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Age at interview: 23
Sex: Female
Age at diagnosis: 23
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I think I wanted to read about this catheter, the fact that, because she kept, when I went and I was told I was booked in for this radical hysterectomy which I hated the word, the radical bit but then read in the internet that it's just the fact that they have to go to the outer limits, as far as they can go with regards to the hysterectomy. Radical, it's just such a horrible word isn't it, it just sounds so absolutely dreadful and kind of drastic. And I got a little, she gave me a leaflet about cervical cancer and she said you know "You know that you're going to have a catheter and you'll probably go home with the catheter," and at that point I didn't really know what that was or you know whether that was something in my stomach or how, but it's not, through your urethra and into your bladder that way. But I didn't know that at the time so I wanted to go looking on the internet, find out about hysterectomy, radical hysterectomy, how the incisions are done, how big the incisions are done and this catheter. So that was quite, is that going to hurt, is that going to hurt when it comes out, how will that work and that kind of thing yeah. And the tube that was in my stomach as well because that sounds horrible as well. But that kind of thing really just reading about the surgery. And also the stages, the stages of the cancer, the fact that I was Stage 1B and I was like oh what does that mean and you know what does 2 mean and just reading about the different stages of the cancer it's quite interesting. I think knowledge does definitely help the situation like that, to know where you're standing and the options.
 

She read about cryo-ovarian preservation on the Internet and was able to talk to her doctors...

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Age at interview: 28
Sex: Female
Age at diagnosis: 27
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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. 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).

 
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Explains how she looked for extra information before making a decision to have a radical...

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Age at interview: 38
Sex: Female
Age at diagnosis: 34
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I just knew, I was very single minded that I wanted the trachelectomy; I'd got all the information. What I did was just get information from people and from professionals and I got their point of view and I as always, I was very thankful for the few people who gave me their honest opinion. And some people, a few people did say 'Well I wouldn't have this, this is new, you're taking a big risk.' And I always appreciated that. I didn't necessarily take their advice but I sort of looked at all the information and then decided myself what was best for me. And I am still glad today that I had the trachelectomy and that I took that option, because for me it was right and I'm glad that I didn't listen to other people. And I knew as well that my consultant, he had said to me 'Well if we do this, and I find more cancer then you'll have to have a hysterectomy.' And I had great confidence in that he would put my safety first. So that's how I dealt with that.

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.

 

Explains how she relied on her consultant to help her decide whether to have her ovaries removed...

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Age at interview: 41
Sex: Female
Age at diagnosis: 39
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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. 

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Last reviewed July 2017.

Last updated July 2017.

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