Managing genetic risk: the experiences of women with a family history of breast/ovarian cancer Nina Hallowell Institute of Cancer Research, London Funded.

Managing genetic risk: the experiences of women with a family

history of breast/ovarian cancer

Nina Hallowell Institute of Cancer Research, London

Funded by WellBeing (RCOG)

Managing Genetic Risk

• GENETIC RISKS = EMBODIED RISKS

• HEREDITARY BREAST OVARAIN CANCER

• FINDINGS

Background

• 5-10% of cases of epithelial ovarian cancer

• 30-60% risk of developing ovarian cancer

• Population risk 1-5%

Risk management options

• No medical intervention

• Annual ovarian screening (ultrasound and CA125 serum estimation)

• Prophylactic surgery (bilateral oophorectomy +/- hysterectomy)

Sample Characteristics:Sample Characteristics:Median AgeMedian Age

• Surgery– Age at interview 45y. (range 32-62)– Age at surgery 39y. (range 31-45)– Mean time since surgery 5y. (range 0.5 - 25)

• Screening – Age at interview 35.5y. (range 29-50)

Sample Characteristics: Sample Characteristics: Cancer Family HistoryCancer Family History

• Mean number of relatives with cancer

– Surgery 4.3 (range 2-8)

– Screening 4.0 (range 1-9)

Sample Characteristics: Sample Characteristics: Cancer Family HistoryCancer Family History

• Number of women with affected 1o relatives– Surgery 21 (91%)– Screening 18 (69%)

• Number of women with affected 2o relatives– Surgery 19 (83%)– Screening 23 (88%)

Risk Management: DNA-testingRisk Management: DNA-testing

• Mutation Carriers– Surgery

• 1 carrier• 1 non-carrier

– Screening• 1 carrier

Risk Management: Risk Management: Prophylactic SurgeryProphylactic Surgery

• 16 Total Abdominal Hysterectomy plus Bilateral Oophorectomy

• 7 Bilateral Oophorectomy – 4 had previous hysterectomy

Analysis

prophylactic surgery and control

regaining control vs losing control

Sue: I mean like people say to me, 'Oh well, I mean it can't get everybody in the family.' But I can't think like that. To me, it's not if, it's when. (surgery 37y)

Angela: … suddenly three of my immediate female members of the family had had cancer, I didn't really see that I could ignore it. You know, it just seemed almost natural to me that I was either going to be the next one, or I was going to spend the rest of my life worrying about being the next one. (surgery 44y)

Abby: I mean in some families it’s just like a little timebomb. It’s like you can do self-examination on your breast, you know if there’s a lump. You cannot with your ovaries. It’s out of your control. (screening 28y)

Heather: you know how they say sometimes, like where they do colour therapy, they say, 'Imagine your parts of your body in different colours'? Well, I see my ovaries as black, and I don't want to know them, because they're potentially a threat to me. (screening 36y)

Eve: I wanted somebody to guarantee that I wouldn't die of ovarian cancer, this (surgery) was the one guarantee. (surgery 34y)

Kim: …I just didn't - I didn't want my life to end as short as mum's, in my eyes, did. There was no alternative but to have the job done. (surgery 32 y)

Abby: The children aren’t really an issue any more. So to me they’re [ovaries] just like an appendix, they’re useless to me, or they’re not really because obviously, you know they do still serve a purpose. But I think I’ll be fine without them. My ovaries are just like my appendix. Yes, but they’re serving a lot of purpose, they’re keeping my hormones in check most of the time. But I don’t need to have them, nobody can see them. (screening

28y)

Linda: I think it - you know, to lose your breast would be a lot worse than losing your ovaries. …to me your breasts, every time you look in the mirror, every time you have a bath. At least with your ovaries you can't see them, can you? So – and it's (mastectomy) disfiguring, isn't it, as well? It's a disfigurement. Whereas with your ovaries, I don't think you've got that. You're not looking there every day, thinking, oh my cripes, I've lost my ovaries. (surgery 39y)

I: mean what makes the breasts and the ovaries different?

Liz: Probably because you can see your breasts, you can't see your ovaries. You know, you don't have sort of pin-ups of ovaries, do you, on office walls? Maybe I could start doing that. ... "Ovary Awareness Week" [laughs]. "Cor, you seen the ovaries on her?” (screening 45y)

Suzanne: I was on Cloud Nine. It was like, you know, it was I woke up and that - a cloud had lifted then, if you like, because being cocky or what I don't know, but I thought, well, I won't get ovarian cancer now! I might get bowel cancer now, or some other part that I have. … The most positive aspect is that um... I'm OK. I've removed that fear, or one of them, the biggest one that was hanging over my head. (surgery 39y)

Julie: I think it's to do with the issue of being a female. Females like to be attractive to the opposite sex. Females like to dress themselves up, they like to look nice. Um... females - we love attention. I mean I do, I adore attention. We enjoy - you know? - we enjoy sexual practices. We have a nice life. We're mothers. We are female, mother earth, you know, we are the women, we're brilliant. And it's like, I thought when I had the operation I'd be denied all that…You go through an identity crisis. And you think, well, if I've had the operation I'm not going to be female any more. How am I going to cope with it? Am I going to have problems sexually?….And it's like I'm a mother and, you know, I'm not going to be having periods, that's great, but maybe I want them. And it's - you're like having conversations with yourself all the time. It's like - the only way - it's like an identity crisis. You're going to have this operation and it's taking all your woman's bits away from you. You know? You're not going to be a woman. …- I felt as if I was going to be losing my femininity, or my role as a lady, as a woman. - I mean women are here to procreate, aren't they? That's sort of our role in life really.

(surgery 32y)

Helen : you know as a woman I feel very strongly that I want to have children, … I suppose that maybe I’d liken it to having a breast removed you know it’s part of you that makes you a woman really isn’t it. … because I am at the age where I am thinking of having children…. But I don’t know I am just surmising really that possibly there might be some emotional thinking, you know that’s part of you being taken away really that’s part of your role on earth being removed. (screening 32y)

Janet I’ve got a thing about my ovaries. I’ve got this thing about them Yes, I do. I think they’re a womanly thing, you know and I think I’ve had the - because of my inability to give my husband children. I’ve still been having my periods and I’ve been saying to myself oh why have I ever needed these? I have this every month. And I’ve had all this for nothing, so I’ve had all this all of my life or all my adult life and you know it’s a blessed nuisance every month, and not being able to have children… and I felt it made me feel less of a women because I couldn’t have children, And it was the one thing we’d always, from day one of getting married, we were going to have a family. It was a big thing in our lives. And I just feel that I haven’t done that…. I think while I’ve got them (ovaries) there’s hope there. So you just think if some miracle did happen and something could be done that the chances are there and would I want to give that up. …. So you see I think I have got a psychological thing about my ovaries (screening 42y)

Nicola: Yes, I do think they [ovaries] are quite special… well they are unique to women they must surely affect your hormones a lot,.. I mean maybe they give you women’s intuition.. I’d probably feel I wasn’t a complete woman anymore and much as a nuisance menstrual cycles are, I think I would feel peculiar if I did not have one in some ways… I don’t know why because they’re not very nice, but it’s a woman’s thing isn’t it. (screening 32y)

Sarah: So I wouldn't want my body to start turning into more of that, where it gets all fat and flabby, and that type of thing. …and all of a sudden, because I've had my ovaries removed, I'd just sort of go to seed. (laughter) Do you know what I mean? You've got no control over what's happening to your body, because of having your ovaries removed. (screening 33y)

Sandy: It was also a fear of me changing as a person… because I knew somebody who had been through the menopause, and she changed totally as a person. She went from being a very soft, loving, gentle person to being somebody who was quite hard and brittle and cryptic, and everything else. …So I had this worry …that I would change. And I've always been very outgoing, sort of happy-go-lucky type of person, and I was worried that it would change me…. So I think that's probably, on reflection, another reason why I kept putting it off. Because it's quite a psychological thing as well. …And if you had the menopause, God, you became miserable and you didn't, you know, have any friends and go out any more. (surgery 40y)

I: Did your gynaecologist tell you that you would maybe have hot flushes?

Sally: No, not with the HRT. I thought they prevented them. And for the first two years after my hysterectomy I didn't have them. That was why I couldn't understand it. But then someone said, you know, you get like an early menopause. And I don't really like to ask too many questions, because I feel a bit stupid. It's my body, and I don't really completely understand all the ins and outs of it…I thought by having it all removed it stops any kind of menopause. (surgery 36y)

Sally: In the summer I felt awful. It was awful. But I mean it was very hot weather. And if we go anywhere that's hot, then - then I get really hot and it's very uncomfortable. But I mean that's just - it's just embarrassing really because I really sweat! (laughs) And it's so unfeminine. Like it just looks so disgusting. I feel terrible. But I mean you can't help it. That's it… and I hate it so much. So it's embarrassing, that's all. (surgery 36y)

Angela: And for a short time I did feel as if I was incomplete... Would I be considered a freak because I wasn't really a woman any more... I mean I don't think that now. I don't feel as if there's anything any different. But I have got a boyfriend at the moment, and I do feel quite awkward about saying “I've had a hysterectomy and I've had my ovaries removed”. I thought he might think “is she a woman?”… I suppose it's a bit like thinking about people that have a sex change or something. You haven't got all your bits, i.e. something that's a bit freakish. (surgery 44y)

“A major obstacle to coming to terms with the full reality of bodily life is the widespread myth that the body can be controlled… The essence of the myth of control is the belief that it is possible, by means of human actions, to have the bodies we want and to prevent illness, disability and death." (Wendell, 1996:93)

Conclusions

• risks associated with being at-risk and managing that risk

• risk management decisions not straightforward