Having a family history of breast cancer

It was apparent that a number of those I met had undertaken a good deal of investigative work to explore in more detail the history of cancer in their family. Deborah talked about how after her mother's two sisters had developed breast cancer they had then uncovered what she termed an 'extensive' family history.

We've done a bit more chipping away to see whether there has been more breast cancer back in other generations. We'd never looked into it until after her sisters [Deborah's mother] had breast cancer and then we were like hang on a minute oh yes auntie so and so died of cancer.

Sometimes it was what was unknown or 'mysterious' and therefore suspect which made a family history 'significant', from the point of view of those attending the clinic. For instance, Lucy suggested that it was the gaps in her knowledge of the history of her family which pointed to possible cases of cancer that might have been hidden, unbeknown to her and others in the family.

I don't know much about my mum's family, my mum doesn't really either. She says that there was an auntie who died fairly young, in her fifties. My mum comes from a quite a big family too, so potentially there could be a lot out there that I don't know about.

However, for most it was not just the fact that significant aspects of family history had been recently discovered or that there could potentially be hidden cases of cancer that they did not know about;it was more that the family history they were aware of pointed to an undeniable danger. This was exemplified in what Shona said:

It obviously is genetic to some extent... it's just there is breast cancer down the female line on my mother's family and it strikes me that it must be related unless it's just a coincidence that my grandmother and mother had breast cancer. But they had very different lives... it's an unlikely fluke because one lived in the country and did nothing for years and years and the other lived in the city and just worked. They had very different lives so it's more probable that it's genetic... [so] it just seemed obvious that I am at higher risk than probably a lot of my friends.

In general, when there were several cases of breast cancer in the family, those I talked to were inclined to think that it was unlikely to be just a 'coincidence'. Genes provided a comprehensible, plausible and rational explanation for the cases of cancer in the family. This was brought home during my meeting with Donna after she talked about and then, after prompting from me, drew her family history.

Donna: It's so weird my Nan's sister is still alive, she was ninety last year. She's got all my mum's cousins they're all fine. But if you look at the tree there are two sisters, like one sister has it and my mum, who's the daughter and then the other line nothing. It's weird, it puzzles my brain?

Sahra: I wonder would you mind drawing how you see your family history?

Donna: No I don't mind. Going on my dad's side, I don't think of my dad's side as related to cancer funnily enough, because my Nan [on her father's side] did have stomach cancer and my granddad did have like a brain cancer but because the daughters didn't... I just see like on my mum's side... do you see what I mean [pointing to the diagram] see cancer and cancer we're scared that it's going to come. See if there is a certain gene it could have missed my aunt but went to my Nan.

Donna's very visual description of her family history helped to give form to a suspicion that genes were responsible for cancer in her family, a rationale that was reflected (and to a certain extent, of course, reproduced) by the drawing I asked her to do, as illustrated below in Figure 1.1.

Donna divided this depiction of her family history into two halves, as her description had suggested. This started at the juncture between her grandmother and her grandmother's sister. The linear trajectory she describes and the danger she feels this poses to her is clearly visible in the way she indicates who has had illness or cancer in the family. After this encounter, I asked several other women to draw how they 'saw' their family history, copies of which also are reproduced in Figure 1.2.

Not precluding the possibility that those I met perceived me as a 'gatekeeper', in terms of access to the clinic, it is nonetheless striking that many of the resulting diagrams were dramatically pared down and somewhat pathologised representations of family history. In nearly all cases, very few affinal relations were included, and in some cases no other consanguineous or 'blood' relatives were drawn. This was particularly so in Jane's and Shona's illustrations where hardly any other relatives were depicted that might detract from the narrative trajectory of risk they had talked about. Jane drew only the two relatives affected by cancer (her mother and grandmother), herself and her two sisters. It was only much later in the interview that she mentioned in passing that she had four brothers. Even when the depiction of family history seemed to be more balanced, or at least encompass more people, as in Julie's case, 'clues' about possible risk were also visually represented. Lucy's depiction of her family history was less obviously a narrative about 'risk' in the way the others seemed to be. There was, for instance, no indication in her drawing of who had had cancer. Nonetheless, unlike others, she had also included her children and her sister's children in her depiction of family history, where there was a gendered ratio which, for her, was further evidence of risk (see p. 40).

These representations and discussions of family history must also be understood in relation to a practice that had to be undertaken by those attending the clinics. That is, before having an appointment confirmed, more than half of those I met were asked to fill in a 'family history

Figure 1.1 A depiction of family history
Jane's family history

Figure 1.2 Other 'patients' family trees

Shona's family history

Figure 1.2 Other 'patients' family trees

Julie's family history

Lucy's family history Figure 1.2 (Continued)

form' which involved them documenting the history of cancer and other significant diseases in the family. This would then be brought or sent to the clinic prior to their first visit.3 It is a procedure which illustrates how those attending the clinic had to be 'active' patients in the process of obtaining a referral or filling in the family history form, showing how recruitment is constructed in particular ways prior to appointments.

However, at the same time completing the form may have made perceived or suspected genetic risk more real, it also confirmed to many that their family history made them 'special' or 'interesting' cases.4 For one person, simply having to fill out the form implied that her family history conferred something of a unique status, otherwise, she said 'they could be seeing everyone'. In fact many of these women were also aware that, given the finite resources in this and many specialist areas of medical practice in the NHS, it was only on the basis of the information documented on the family history form that they would receive an appointment at the clinic. As such, there seemed to be an effort to represent family history in particular ways that might 'talk up' apparent or perceived danger in order that their family history would be seen as deserving attention. In fact, there was a sense among some of those I met that seeking and obtaining an appointment was something of an 'exchange' with particular health care or research institutions. This was illustrated in the way one woman in her early thirties, who was keen to be on some sort of screening programme, talked about her desire to be seen in the clinic in terms of 'giving something back' to the hospital where her mother was treated:

When my mother was here I raised some money for the hospital and I thought 'oh it would be good to give something back'. People aren't going to get anywhere with research unless people help out and also because, although I don't know my exact risk, I guess it's a lot higher than other peoples, which makes me think I'm a more interesting case.

These remarks highlight how for some persons a willingness to take part in medical research intersects with an awareness of increasingly 'rationed' health care. In other words many knew that being able to participate in acts of altruism, in 'giving something back', was dependent on being a 'case' of 'interest' in the first place. It is a set of entangled exchanges a number of women I met seemed willing and eager to be part of;an ethos of reciprocity which was reflected in already pathologised depictions and narrative accounts of family history which made real and manifest the evidence of hidden or latent past and future risk or danger.

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