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Surveillance or surgery? A description of the factors that influence high risk premenopausal women's decisions about prophylactic oophorectomy

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Editor—Approximately 5% of cases of epithelial ovarian cancer result from an inherited susceptibility.1 Some of the genetic mutations responsible have recently been identified.2-5 It is estimated thatBRCA1 carriers have a 28% lifetime risk of developing ovarian cancer,6 whileBRCA2 carriers have a risk of 0.4% of developing ovarian cancer at the age of 50, which rises to 27% by the age of 70.7 The recommended management of high risk women is either annual ovarian screening (transvaginal ultrasound) with serum CA125 measurement or bilateral prophylactic oophorectomy from the age of 35 onwards, or once childbearing is completed.8-11 As there is no evidence that ovarian screening is effective in reducing mortality, it is currently assumed that prophylactic surgery is the best form of risk management,12-14 although data suggest that intra-abdominal carcinomas may still arise following this procedure.15-17

There is little published research on the uptake of preventative surgery in at risk women18 or mutation carriers.19 20 However, it is generally assumed that there will be an increase in demand for prophylactic surgery, as direct mutation testing becomes more widely available. Epidemiological studies suggest that prophylactic oophorectomy may play a role in the prevention of breast cancer in high risk populations.21 22 Therefore, there may be a case for informing women at risk of breast cancer about this option. If health professionals are to facilitate informed decision making about ovarian cancer risk management, then they need to be aware of the factors that influence women's decisions about prophylactic surgery.

There are few published data that describe the factors that influence women's decisions to undergo prophylactic surgery because of their inherited risk of developing cancer. Studies of high risk women who have undergone prophylactic mastectomy to manage their risk of breast cancer suggest that surgical decisions are influenced by subjective risk perception and cancer worry23 24 and the death of other family members from breast cancer.24 Similarly, research involving at risk women following attendance at genetic counselling for hereditary breast/ovarian cancer suggests that attitudes to prophylactic oophorectomy are influenced by subjective risk perception, cancer worry, attitudes about the menopause, and social obligations.25 26 While this research is informative, it can also be seen as problematical because (1) prophylactic surgery was a hypothetical option for some of the women in these studies, in the sense that there was no indication that they were seriously considering this form of risk management, and (2) the menopausal status of participants was not reported. With regard to the latter point, it can be speculated that, because oophorectomy results in menopause, surgical decisions may be influenced by current menopausal status. The present study of surgical decision making has tried to overcome the shortcomings of previous research on prophylactic oophorectomy, by interviewing high risk women who have previously undergone prophylactic surgery before the menopause, together with premenopausal women who have rejected this option for the present.

Methods

RECRUITMENT

The participants were recruited from the United Kingdom Cancer Coordinating Committee's Familial Ovarian Cancer Register, the Risk Advisory Clinic at St Bartholomew's Hospital, London, and the Cancer Family History Clinic at the Royal Marsden Hospital, following LREC approval for the study. Information about menopausal status before surgery or at the time of interview was available for women recruited from the UKCCCR register; for the remainder of the sample, whose menopausal status was unknown, 45 years of age was used as an arbitrary cut off point for recruitment. With the exception of one affected woman, only women who had at least two first or second degree relatives affected with ovarian (or breast) cancer were approached to participate. All women in the surgery group were recruited from the UKCCCR register, and therefore had two relatives with ovarian cancer. With the exception of two women who had no affected first degree relatives, one of whom had a paternal family history, all had a 50% chance of carrying a mutation. Sixteen women in the screening group were recruited from the register and the remaining women were recruited from the clinics mentioned above. In the case of women recruited from the clinics, only those with a family history consistent with HBOC were recruited, which meant that they had at least one relative with ovarian cancer and other relatives with breast cancer. Eight women in the screening group had no affected first degree relatives, although one of these had been treated for breast cancer. Thus, 19 women in the screening group had a 50% chance of carrying a mutation and seven were at 25% risk of carrying a mutation. Of these seven women, three had a paternal family history and four a maternal history. In three of the latter cases their mother had undergone therapeutic or prophylactic oophorectomy because of the family history of ovarian cancer.

DATA COLLECTION AND ANALYSIS

In depth interviews (one to three hours) were carried out in a location of the participant's choice (see box 1). All interviews were tape recorded with consent and transcribed. Consent to analyse the tapes was also obtained at the end of the interview. A thematic analysis of the interview transcripts was undertaken usingAtlas-ti 27 to manage the data. The data were initially indexed on a case by case basis, which allowed patterns and relationships between the codes to emerge within the data set.28 Between interview comparisons were also made and this enabled deviant cases to be taken into consideration.29 The resulting themes provided an all inclusive description of participants' accounts of surgical decision making. The frequencies with which some responses occurred are noted in the presentation of the results. While this should not be interpreted as indicating the relative importance of the different responses, it does provide an indication of their representativeness within this data set.

Box 1

At the start of the interview the participants were asked to provide a narrative account of their experiences of cancer in their family and to describe their risk management behaviour. Thus, the structure and content of the interviews was dictated by participants' initial responses. In addition, a series of questions was also used to guide the interviews. These explored: women's decision making, attitudes about the different risk management options, knowledge of ovarian function and menopause, their understanding and recall of the information they received pre- and post-surgery, the sources of this information, and what further information they wanted or needed.

Results

The surgery group, who were invited to participate, included 33 women from the Familial Ovarian Cancer Register who had undergone surgery and met the study criteria. Ten failed to reply and 23 (70%) women from 17 families were finally recruited. The screening group, who were contacted by letter, included 34 women who were currently undergoing screening and/or had attended genetic counselling. Three refused to take part and five did not respond; 26 (76%) women from 24 families were recruited. The demographic and cancer family history variables of the participants are summarised in table 1.

Table 1

Participants' characteristics

The analysis of the interviews with women in both the screening and surgery groups suggested that there are five main factors that influence surgical decisions. These can be summarised as: (1) risk perception and the risk of cancer, (2) witnessing a relative's experience of ovarian cancer, (3) family and social obligations, (4) fertility and menopause, and (5) fear of surgical procedures in general. Where appropriate, the following discussion will compare the responses of those who had undergone or rejected surgery (for the present) to highlight points of continuity and difference between the two groups.

(1) RISK PERCEPTION AND THE RISK OF CANCER

Others have observed that risk perception and cancer worry may influence the decision to undergo surgery.23-26 Similar observations were made in the present study, for with one exception, all of the women in the surgery group reported experiencing a great deal of anxiety about their ovarian cancer risk before the removal of their ovaries. Eight women said they had previously viewed their risk in absolute terms and had undergone oophorectomy because they had believed that they would definitely develop ovarian cancer in the future. (To maintain the participants' confidentiality all the names used in this paper are self-chosen pseudonyms.)

Julie: “My own personal reason was, I had the operation because I didn't want to die. That's how I looked at it. And I was really, really concerned that because of the history that we've got, that I would get ovarian cancer, even though I was being screened regularly . . . And I would honestly say that I was so concerned that I would get the cancer. . . .. I thought, no, I've got to have it done. I don't want to die. That's how I ended up. I don't want to die. I thought, I'm not going to die, I'm going to have this operation no matter what.”

Ten women claimed to have viewed their risk probabilistically, and said they used to think of themselves as having a higher risk of developing cancer than other women because of their family history. Seventeen women reported that their fear of developing cancer had been an influential factor in the decision to undergo surgery, and all the women in the surgery group reported feeling an overwhelming sense of relief following oophorectomy. They said they no longer perceived themselves to be at risk and no longer felt afraid or worried about developing ovarian cancer.

Sue: “Certainly the worry taken away is worth everything else because ... it was a big worry especially since my sister died. I mean when it was just my mum it was one of them things, then it was my aunties . . .and then when it starts on your sister you think... that worry taken away just made such a difference.”

Five women in the screening group perceived their risk in absolute terms and were convinced they would develop ovarian cancer in the future (three of these planned to undergo prophylactic surgery), while 16 women said they perceived themselves as at increased risk compared with the general population. Fourteen women said they needed more information about their risk of developing ovarian cancer before they would seriously consider prophylactic surgery. More specifically, they suggested that confirmation of their mutation status would help them to make a decision about surgery, as Nicola said: “If I knew that I had the defective gene I would have surgery without a doubt.” This contrasts with women in the surgery group, who, with one exception, had undergone surgery without verification of their mutation status. However, it must be noted that in many cases this option was not available at that time.

Other women in the screening group indicated that, even if they were confirmed as mutation carriers, they would not proceed with surgery on the basis of increased cancer risk alone.

Carol: “It's like sort of - I don't know, cutting your arm off for a scratch on your finger . . . even if they identify me as having the gene, they say you may or may not get cancer from it. You may still not get cancer from it all your life. I just think it just seems - to cut out healthy organs as a preventative measure seems drastic, unless you've got one hell of a case for doing that.”

Susan: “On - on the whole - you know? I mean you can have the test, you can have the gene, but you still might not get the cancer. You might not have the gene, and you could still get cancer. Um... you know? So the - I mean I don't know. Obviously they're not going to know how many people who've got the gene go on to develop the cancer, are they?”

Some women in the screening group also expressed scepticism about the efficacy of prophylactic surgery in containing/lessening the risk of ovarian cancer. They reported receiving confusing messages either from their doctors or the media about whether surgery would prevent cancer occurring.

Katrina: “Well, nobody seems to know really if it [surgery] is beneficial or not. I get sort of not conclusive answers, really. It's almost as if, um, well, give it a try. We think it may be beneficial. And some consultants do it, some don't. And it's this conflict of opinion that - it confuses you really . . .. I think if I conclusively knew that there was a big reduction in the risk, I would probably opt for it. But as it's still up in the air at the moment, I'm just going to stick with screening for the moment.”

Moreover, 10 women said they did not perceive surgery as a viable option because of the residual risk of developing peritoneal cancers.

Carol: “If they could say, you've inherited the gene - but they can't tell me that either. It's a gamble, I know. And my sister was told at X by the consultant there, even having your ovaries removed wouldn't really make the risk - because there's still ovarian cells in the rest of your body from um when you're in the embryo stage. Apparently there's ovarian cells still in your body that could turn cancerous. Just a very, very remote chance, but there is a chance.”

Some of these women were uncertain about where these cancers might develop and worried that they might be potentially “less detectable” with screening.

Sarah: “Oh, one of the things I would worry about is the risk of this little bit of ovary being left behind, and if that did happen - she said, oh, it was very, very minimal, but if that did happen, and some cancer started growing there, where would it start growing next? What sort of direction? Like I say, they may not know, but where would it go? So what - if it started growing on another organ, what would the consequences of that be?”

As far as some women in the screening group were concerned, it was important to keep their ovaries because they constituted a target organ for cancer to develop in/on. Indeed, because these women believed in the efficacy of ovarian screening, they felt their risk of cancer would be better managed, at least for the present, by keeping their ovaries and having them monitored.

In contrast, only one woman in the surgery group reported that she was aware of the risk of peritoneal carcinomas following surgery, while another recalled being told that her risk of breast cancer was increased because she had undergone ovarian surgery. With these exceptions, there was no evidence that women in the surgery group had taken the residual risk of developing peritoneal cancer into account when making their decisions. This line of questioning was not pursued during the interview for ethical reasons.

Finally, two women in the screening group said that they would like more information about the symptoms of ovarian cancer and the efficacy of screening, particularly the prognosis of cancers detected during screening.

Vicky: “I mean I think, you know, the implications of if you do get it, how quickly it - and how deadly it is, actually. It's pretty horrible, isn't it?”

(2) WITNESSING A RELATIVE'S EXPERIENCE OF OVARIAN CANCER

Cancer risk management decisions were frequently described as influenced by people's former experiences of ovarian cancer, particularly nursing a dying relative. Many women talked at great length and very emotionally about their mother's or sister's illness. Indeed, many of those in the surgery group said that the death of their mother or sister or a relative in their generation (for example, a cousin) had been the one of the most influential factors in their decision to have their ovaries removed.

Linda: “I suppose I might have been luckier than some, with actually having seen a lot of what goes on, with my mother, as well. I'm - you know? - I'm aware of what happened. Some people don't ever see that. They don't ever see that side, you see. So um when I saw that, then that's another fact that made me you know, that helped towards me making my mind up.”

Pam: “No, I think knowing that - how my mum looked, and what she suffered, or what she must have suffered, I thought, there's no way I'm going to do that. I mean the poor lady, I mean they drained 19 litres of fluid off of her, and it still came back. She was like a beached whale. And I thought, how can anybody suffer like that? And how long had this been going on? And they say it's one of the fast-growing ones, because it's hormonal. And I thought, well, there's no way. Because I wouldn't want my children to see me go through that agony.”

Similarly, some women in the screening group acknowledged that their past experiences with ovarian cancer were an important influence on both their risk perception and attitudes about future cancer risk management.

Mary: “I think the biggest influence for me is seeing personally at first hand people dying of it. There's no doubt that that brings it home to you, and I'd prefer not to go down that route . . . I mean I don't want to end up in the pitiful state that my mother was in. I've seen that, and I remember her suffering. I can see her crawling across the floor on her hands and knees, because she was in so much pain. And after seeing something like that, if hysterectomy is the answer, then I'll go for it. . . . I think it might be a harder decision for somebody to make who hasn't seen anybody with the illness, who's never come into contact with cancer of any form, because it's the nasty word, people don't - well, they talk about it more than they used to, but a lot of people don't come into contact with it. And having seen people with it, and just what it does to them, and the family round them, I don't want to go - I've no intention of going through that, if I can help it. So if they said, you've got to have your right arm off at the same time, I'd do it. I'd do it.”

While others were aware that their lack of first hand experiences of others' suffering had influenced their risk perception and attitudes about prophylactic surgery, they felt at less risk and were less inclined to opt for this risk management option.

Susan: “I think they've [cousins] got a very negative - I mean obviously it's hard for them, because they - I don't know, I think their mother died possibly, or, um - whereas, you know, my mum's still alive. I suppose if she had died, I would perhaps feel differently. But I do think they put across a negative attitude, that if you've got this gene, you're going to get it and you're going to die unless you - you know, unless you take this drastic - have this drastic surgery . . . Unless I had a cancer, I don't think I would take it as a preventative medicine, because you have to keep cutting bits out, you know. That's how I feel. But um, you know, obviously I haven't had - I haven't seen somebody die from it.”

The importance of witnessing a relative's experience of ovarian cancer may account for the fact that 87% of the women who had undergone surgery had first degree relatives who had died from ovarian cancer, compared with only 41% of women in the screening group. Indeed, the women in the surgery group, and those currently considering surgery in the screening group, also reported experiencing high levels of anxiety about developing ovarian cancer before surgery, which many acknowledged had been explicitly influenced by their experiences of cancer in the family. This observation suggests that those who have not witnessed ovarian cancer in a close relative, for example, women with a paternal family history, may be less inclined to opt for surgical risk management. There was some evidence of this in the present study, as the screening group contained a larger proportion (19%) of women with a paternal history than the surgery group (4%).

(3) FAMILY OBLIGATIONS

As has been noted elsewhere, high risk women frequently describe themselves as having an obligation to their family to manage their cancer risks.30 Similarly, in this study, none of the women in the surgery group described their decision to undergo surgery as a decision they made just for themselves; indeed, nearly all the women said that they had a responsibility to their family to prevent ovarian cancer occurring. They described themselves as having had a responsibility to undergo surgery to ensure they remained healthy so that they could raise their family.

I: “What was the most important reason for you having the operation?”

Linda: “My son, my husband, I think deep down, my son more than anything... I wanted to be around for him you know I didn't want like my mum lost her mum at age 10 and my sister was 19 no 20 something... but I wanted my son to have me here as long as possible, and to be around for him and my husband... having said that if I'd been on my own I would still have probably gone ahead with the operation because I want to live.”

As noted above, they also saw themselves as under an obligation to prevent their family from seeing them suffer or having to care for them as they had cared for their relatives.

Victoria: “I mean I knew I had to. Once the [mutation] test was positive, I knew I had to have it [surgery], because of the chances. But I never felt that I would actually get it. I couldn't take that chance, and my husband didn't want me to. And if it did happen, I didn't want my children to suffer how I suffered with my mum and even more so with my sister . . . If I'd been on, a single person on my own, I might not have. I don't know. I just didn't want my children to go through what I'd been through with my sister and with my mother.”

Familial obligations also influenced decisions about the timing of surgery. All the women acknowledged that social support during convalescence was important. Some in the surgery group had postponed surgery until the summer holidays so their children could help out, others timed their admission to hospital so that their in laws or partners could look after the children. For one woman with very young children, the option of surgery only became a possibility once she found out that she was entitled to a home help supplied by social services.

However, familial obligations not only influenced decisions to accept surgery, but also to reject it. Seven women in the screening group said their decision to continue screening, rather than undergo surgery, was affected by the long period of convalescence needed following surgery, and the effect that it would have on their ability to provide practical and economic support for their family.

Katrina: “I'd want to know the recovery time, and the time out I'd have to take from work, which is very important for me because I'm a single parent now, so I haven't got a husband ready to take over. Which also is a personal reason for me not opting for it. . . .I mean it's social reasons are one of the reasons why not, as far as I'm concerned. If I was married and had a husband at home earning a wage, I could quite possibly consider it. But as I'm the only - you know? - wage earner and stuff like that, I have to consider that as well. I suppose we could live on [unclear] for six months [unclear, laughter].”

Others rejected the idea of prophylactic surgery on the grounds that their admission to hospital would potentially cause emotional upset within the family. In particular, the women who had previously undergone therapeutic surgery for breast cancer talked about the effect of their cancer treatment upon family dynamics, and were very keen to avoid causing their family any further anxiety by seeing them hospitalised again.

I: “Are there any other reasons that put you off having surgery?”

Barbara: “No, nothing else. It's just that I just don't want to go through all that again. Really don't want to go through it again. It was just traumatic last time. Not the actual surgery as such, but the trauma thing of leaving here to go and have it done. You can imagine, leaving your children and thinking, oh, I've got to go back in there again. Oh, I can't go through that. And I keep thinking, you know, I keep thinking I'd be really unlucky to get breast cancer and ovarian cancer. You know? But I'm prepared to take the chance.”

(2) OVARIAN FUNCTION: FERTILITY AND MENOPAUSE

All the women knew that ovaries have a reproductive function and infertility following oophorectomy was seen as a major influence on risk management decisions. All those in the surgery group said they had taken this into account when making the decision. In most cases when their doctor first mentioned surgery, they had already completed their families. However, two women said they had postponed the operation for a few years because they were not sure about having more children.

Nine women in the screening group also described their decision to continue screening as specifically influenced by the need to maintain their fertility for the present, although one woman said that if surgery were necessary she would consider adoption.

I: “What do you think would happen to women who had their ovaries out at 26?”

Abby: “I just think they'd be extremely depressed. Definitely. The thought of you not being able to choose to have any more children yourself - I don't - I didn't then, I didn't want that decision taken away from me. That was my decision, nobody else's, and I didn't want that taken away from me.”

Sandra: “But all the time I'm 37 and under forty especially and I've only got the one child, that is the reason, because it would take all my options away, and er you just don't know. That is the main reason. It would completely take my options away.”

Six women in the screening group and five in the surgery group were not aware of the hormonal functions of the ovaries at the time of the interview or before their operation, respectively. These women said they did not know, or had not known, that the removal of their ovaries would result in immediate menopause or that they would need hormone replacement therapy (HRT) after surgery. The remaining women in the surgery group said they had been aware they would be menopausal following the operation, and some said they had been worried about the effects of menopause before surgery.

Julie: “And I had visions of me having hairy legs and beard and broken bones and - you know, like an old person.”

On the other-hand, 14 of these women said they had been unaware of the specific menopausal symptoms that they could, or did, experience postoperatively.

Fifteen women in the screening group said their attitudes to prophylactic surgery were influenced by their concerns about the physical and psychological sequelae of surgical menopause.

Emma: “I suppose I think in a way, er, the effects, hormonal effects, on your body.”

I: “I mean what sort of - apart from the bones [laughter] what other effects do you think there would be? What side effects?”

Emma: “I suppose being less feminine. I don't know if that's a mental thing as well.”

I: “Yes. And what do you sort of mean? In what sort of a way?”

Emma: “Um... I don't know. I suppose you think of like growing facial hair, and - I don't know, perhaps does it alter your figure or - you know? Do you start losing your hair? You know? It's that kind of a thing, I suppose.”

Four women in the screening group, who were aware of other potential health risks associated with a surgical menopause (for example, the increased risks of osteoporosis and cardiovascular disease) said they would like more information about the most appropriate age to undergo ovarian surgery.

Jenny: “But it's being in the limbo and not knowing when's the appropriate age to have it done.”

Although 17 women in the surgery group recalled being told that they would have to take HRT following surgery, many said this was the only information they received. Most reported that they had felt less anxious about the menopausal side effects of oophorectomy when they were told, before their operation, that they could take HRT, although one women described how she had worried that the HRT might make her more emotionally labile.

Eve: “I know one of the things I did say to him [gynaecologist] about HRT was I didn't want it to make me a Jeckyll and Hyde character, because even with my periods before hand I was very very even, I didn't peak and trough through the month um .. and I didn't want that.”

The data suggest that women want and need much more information about HRT both before and after surgery. Seven women in the screening group expressed concerns about the history of breast cancer in their family and had interpreted press coverage of breast cancer and HRT as meaning they would be unable to take HRT following an operation. Women in the surgery group voiced similar concerns. They said that they worried about HRT increasing their risk of breast cancer and had received conflicting information from their doctors and/or the media. The most frequent types of questions about HRT asked by women in both groups were summarised by Jenny as follows.

“I'm going to need HRT. Can I get away without HRT? How am I going to increase my personal risk of CA breast if I go on HRT, given the family history? There's a new hormone-free HRT. Is that going to be banned before I can get my hands on it? Er, and what's the minimum-maximum period that I would stay on the HRT?”

(5) FEAR OF SURGICAL PROCEDURES

Seven women in the surgery group said that the decision to undergo surgery had been influenced by their fear of surgical procedures in general. In every case their anxiety about surgical procedures had meant that they had postponed making the decision for a few months.

Sue: “It never - it - apart from the surgery itself, which I was terrified of, actually having your ovaries taken away never, never bothered me . . .I'm so frightened of hospitals...I wanted one [oophorectomy], out of fear, but I didn't want one out of fear of hospitals! [laughs]”

Fear of surgery similarly influenced the risk management choices of some of the women in the screening group. Eight women said their decision to continue ovarian screening was influenced by their fear of surgical procedures in general, for example, anaesthesia, pain, and postoperative complications.

Jane: “Surgery is a bit sort of frightening.”

I: “What sort of things frighten you about surgery?”

Jane: “Well it is just the thought of them cutting you up, and if anything went wrong, and you didn't wake up again . . ..”

Janet: “And I'm also concerned with keyhole surgery...I've had laparoscopies, and I know it moves things around, because they blow your stomach up and things don't go back in the right place.”

The women who had previously undergone surgery for breast cancer also talked about their fear of surgical procedures. They were less likely to want to undergo further surgery for prophylactic reasons, even if DNA testing showed they carried a mutation.

Barbara: “He [consultant gynaecologist] said, ‘I strongly suggest you have them out’. And I thought about it and I thought, I just don't want another operation. So I opted for the screening as opposed to the operation. And he did explain that the screening isn't one hundred per cent. But that's a chance I'll take. . . . quite honestly I don't want another operation. I am so scared of going under, and thinking, will I wake up again? You know? I just - being in hospital again, with all that business of the having the things aspirated, . . . Oh, no thanks. No, I'll take the chance.”

Discussion

The present study used qualitative methods to determine the factors that influence high risk premenopausal women's decisions about prophylactic ovarian surgery. As others have noted, surgical decision making involves the weighing up of both positive and negative expectancies concerning the outcome of surgery.31 In the present study, this involved women balancing the gains of risk reduction, the relief of anxiety, and fulfilling one's familial obligations to remain healthy against the potential costs of surgery, such as infertility and the onset of menopause, the continuing risk of developing what is perceived as a “less detectable” peritoneal carcinoma, and one's inability to care for the family during convalescence. While it is difficult to draw firm conclusions from this study, because of the small number of women involved, the data raise some interesting questions for further research.

The interviews showed that decision making about cancer risk management is a complex process, involving the consideration of both individual and social factors, individual perceptions of cancer risk and the recognition of the effects of undergoing surgery upon the family. Furthermore, surgical decision making emerged as a dynamic process, as shown by the fact that none of the women in the screening group had absolutely ruled out the possibility of prophylactic surgery at some future date. All the women who were currently undergoing ovarian screening acknowledged that they could change their minds about surgery, if their circumstances changed. This observation suggests that to divide these women into two distinct groups is to make a somewhat artificial distinction. However, as has been shown above, subtle differences were also apparent between the responses of the two groups.

As a recent study of decision making about prophylactic mastectomy has shown, risk perception and attitudes to breast cancer risk management appear to be affected by previous experiences of cancer in the family.24 The present study similarly found that the experience of witnessing ovarian cancer in a close relative was a very influential factor in surgical decision making. Many women in the surgery group reported experiencing high levels of anxiety about developing ovarian cancer before surgery, which most acknowledged had been influenced by their experiences of cancer in the family; similarly, some in the screening group hypothesised that they were less anxious because they had not had this experience. This observation may explain the recent finding that the consideration of prophylactic oophorectomy is positively associated with subjective risk perception and cancer worry rather than objective risk estimates.26Indeed, the fact that a larger proportion of women in the surgery group had witnessed the death of a close relative from ovarian cancer may explain the fact that more women in the surgery group expressed the view that their risk of cancer was absolute than those in the screening group.

It was suggested that women who have a paternal family history of these cancers, and are therefore less likely to have witnessed ovarian cancer in a close relative, may be less inclined to opt for surgical risk management. However, research suggests that women with a paternal family history may opt for screening rather than surgery for other reasons. A recent study of at risk women and breast cancer patients indicates that they regard men as less likely to pass on the genetic mutation for breast cancer susceptibility than women.32Thus, it is possible that women with a paternal history consider themselves to be at less risk of carrying a mutation and developing ovarian cancer than those with a maternal history, which indeed they are if they do not have an affected first degree relative. While there were not enough women in this sample with a paternal family history to substantiate these claims, what must be noted is that of the four women in the screening group with a paternal history, who had a 25% risk of inheriting a mutation, only one had attended genetic counselling and received this information. These observations suggest that there is a need for research that specifically focuses upon the attitudes and risk management practices of women who have a paternal family history of breast/ovarian cancer.

One of the main differences between the groups' responses was the importance they placed upon establishing their mutation status before prophylactic surgery. It was observed that many of those currently undergoing screening said they would consider surgery if they were confirmed as a mutation carrier, in contrast to the majority of women in the surgery group who had undergone surgery without previous confirmation of their mutation status. This difference may be explained by the fact that most women in the surgery group had not been offered mutation testing before surgery; indeed, in some cases this was not an available option as the gene had not been identified at the time they were making the decision to undergo surgery. Given these observations, it can be argued that the responses of women in the screening group may provide a more accurate picture of the influence of mutation testing on surgical decisions. Indeed, the responses of the screening group concur with the findings of recent research which suggest that many women undergo BRCA1/2testing to facilitate decisions about prophylactic surgery.33 34 Thus, it can be hypothesised that as the availability of mutation testing increases, we may see more women postponing prophylactic surgery until they have received information about their mutation status.19 Clearly, there is scope for a prospective study that looks at the impact of mutation testing on risk management decision making.

Similarly, between group differences were observed with regard to women's attitudes about the risks of peritoneal carcinomas. A large proportion of the screening group said that these risks had influenced their decision to reject surgery, whereas only one woman in the surgery group specifically mentioned these risks. As was noted above, it was thought unethical to pursue this topic with women who had already undergone surgery, on the grounds that if they were unaware of this risk, then providing them with this information could cause them anxiety. Therefore, as there is no evidence that the women in the surgery group had been told of this risk before surgery, it is impossible to say whether the risk of peritoneal cancer had any effect upon their decisions. However, the responses of the screening group suggest that providing women with this information does influence their risk management decisions. What was apparent from these women's responses was that the smaller risk of a less detectable cancer developing following surgery was seen as a negative outcome of oophorectomy and this, when combined with other perceived costs of surgery, was used as a justification for rejecting the surgical option for the present.

Finally, this study can be seen as having implications for clinical practice. It suggests that if medical professionals are to facilitate women's decisions about their cancer risk management, then they need to ensure that they receive clear information about the risk reducing benefits of prophylactic oophorectomy and the potential physical and emotional consequences of undergoing gynaecological surgery. Furthermore, medical professionals need to take into account the weight given to familial responsibilities in the decision making process. In addition to providing emotional care, women also provide practical care for their families and, particularly in families where they are the main or only wage earner, surgery may not be perceived as a practical risk management option. Medical professionals need to be aware of these practical and/or economic constraints on women's cancer risk management choices and, if appropriate, provide information about agencies that can provide support.

In conclusion, it must be noted that the information needs of high risk women who consider prophylactic mastectomy are well provided for; in many centres within the UK they have access to breast care nurses and/or high risk women who have undergone prophylactic surgery. At present, similar support does not appear to be available for those undergoing prophylactic gynaecological surgery. This study suggests that an information and support network should be put in place for premenopausal women who are considering prophylactic oophorectomy. This could either involve the establishment of self-help groups in regional centres, the provision of gynaecological nurses, pre- and post-surgery, or, at the very least, providing women with written information about prophylactic ovarian surgery and its potential after effects.35

Acknowledgments

We would like to thank all the women who took part in this research, the Steering Committee of the UKCCCR Familial Ovarian Cancer Register, Carole Pye, and Amy Storffer-Isser, the staff at St Bartholomew's and the Royal Marsden Hospitals particularly, Laura Hitchcock, Karen Cook, Karen Sibley, Audrey Ardern-Jones, Ros Eeles, and Chris Haracopus. Thanks are also due to Julia Lawton for her very helpful comments on an earlier draft of this paper. This research was supported by a grant from WellBeing (grant No HI/97) to the authors.

References

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