Sangeeta Chattoo sc543s@york.ac.uk

1. The long term impact of cancer: negotiating threats to fertility and identity Sangeeta Chattoo sc543s@york.ac.uk

2. Background • Sociological literature – cancer is the metaphoric terrain of biography and social history (Susan Sontag, 1991). According to Arthur Frank (1995),we all living in a ‘remission society’. • Cancer Reform Strategy and the DH/ Macmillan National survivorship Initiative – focus on long term impact of cacer and provision of individualised care • Policy and academic discourse - little focus on the impact of treatment on fertility, negotiation of fertility ‘preservation’ and/or use of reproductive technologies (Jenny Meriel’s Editorial, BMJ, 2010: 3-4 )

3. little knowledge about how treatment related to cancer might impact on education, employment and intimate relationships for younger cancer survivors • little knowledge about how negotiations of treatment and threats to fertility might relate to ethnicity, religionor socio-economic background • wider recognition of changing needs of an increasingly diverse society, and a move away from essentialised accounts of minority ethnic communities • tensions between goals of individualised care and bureaucratised approaches to training in ethnicity and diversity within health services

4. Aims and methods of our research • understand how younger adults (18-40 yrs) of white and South Asian origins experience and negotiate uncertainty and threats to fertility posed by treatment/s for cancer • understand how decisions related to treatment, fertility preservation/analysis or alternate routes to parenting are negotiated within the context of surviving cancer • look at the similarities and differences across ethnic groups – focusing on gender and socio-economic factors • identify gaps in services and provide some recommendations

5. Theoretical approach Theoretical underpinnings Three intersecting sets of literature literature on cancer – social sciences and healthcare/ psychosocial oncology ethnicity and health ethnicity and infertility Analysis a biographical, case-study approach operationalising the notion of ethnicity by breaking it down and focusing on the context

6. Funding and collaborators at 3 geographical sites • - Analysis of two inter-related datasets • set A – (17) interviews and three focus group discussions with (16) professionals • set B – in-depth interviews with 18-40 year old men and women affected by cancer (N - 47) • - Site 1 – 11; Site 2 – 12; Site 3 – 24 • - 24 had lymphoma; 17 had testicular cancer; 5 had sarcoma and 1 had breast cancer • - longest time since diagnosis – 22 years (34 years at the time of interview)

7. Table: sample break-up of patients

8. Five students, 21 participants were either not married, divorced, or not with a partner; only four South Asian couples lived in some form of an extended family • a majority of the SA participants were born or brought up here, and only one opted to be interviewed in Hindi • of the 12 participants who did not have children, 3 women and 2 men knew with some certainty that they were not fertile - engaging differently with the prospect of childlessness • only 1 man had used donor insemination (unknown),1 woman had stored embryos and one had harvested eggs, both had children ‘naturally’ (Interestingly, all three were recruited from the same site, as were two other women who were offered preservation)

9. Professional assumptions about South Asian families: tyranny of family and culture • South Asian (Muslim) men have greater difficulty in banking a sample - religious proscription against masturbation- consult a mullah (religious preacher), often accompanied by their wives (MPR2; FGD 3). • ‘Asian’ parents are over-protective, sit in on consultations and moderate discussions and decisions related to treatment and preservation • breakdown of marital relationships in the face of infertility - given a pro-natalist culture. Examples of white couples breaking up in a similar situation reflect ‘choice’ rather than culture • ‘Asian’ patients are ‘secretive’ about going through fertility treatment (FGD3; MPR2; FP9) and donor conception- isolated examples constitute ‘culture’

10. Men and sperm banking as a medical encounter • the significance of uncertainty and how professionals explain the probable impact of treatment on fertility – leaning on different scripts to interpret the information • Only one of the men (ethnicity??) in our sample, diagnosed at 16, said that his parents and professionals prevented any discussion around impact of treatment on fertility. A majority had been offered the opportunity to bank a sample before starting treatment • none of the 5 SA men who were not able to bank sperm provided a religious explanation (2 knew that they were not fertile; 3 were too ill at the time to contemplate the process) • a majority knew about a ‘fertility test’ but avoided the prospect of knowing until they were in a stable relationship/ contemplating having children. Only two men (ethnicity??) who had already been tested wanted to go back – seeking confirmation

11. NICE guidelines: the dilemmas posed by the process of ‘preservation’ and consent • And what’s interesting, I think, the partner, the person who hasn’t got cancer, is in a real predicament actually because, you know, they may not be wanting to have children, they may not, you know, be thinking this is a long term relationship and now they’re forced to think about something, this hugely mature thing (FPR13) • Ethical issues • contemplating ones own deathand commitment to having children prematurely • professional judgements about rights of people with cancer to have children, notions of appropriate parenthood and arguments about ‘best interests of the child’

12. Diagnosis for women, moving on with treatment and ‘choices’ for fertility preservation • all the women (except 1) recalled an initial discussion around the time of diagnosis on potential impact of treatment on fertility • however, a majority felt the need to rush with the treatment, given the pragmatics of harvesting eggs or embryos (i.e. having a partner). The woman who was able to store embryos was married and did not need chemotherapy at the time • two women had been offered the option of freezing /embryos but lost time in being transferred from one hospital to another – leading to long term distress at a lost opportunity • a majority felt that the issue was not discussed in detail, or revisited during follow up visits

13. Interpreting signs of ‘premature ovarian failure’: the dialectics of uncertainty and hope … I think, from sitting in some medical consultations, I can see where confusion does occur. You know, things like, ‘You have ovarian failure’ …. ‘Your ovaries are likely not to function’…. But they don’t mention the word ‘baby’ or ‘conception’ or any of those things. But then I see my role as a CNS as, kind of, demystifying that bit and put it into context for the patient…. (clinical nurse specialist, oncology, FG3)

14. Coming to terms with ovarian failure A…. was a 22 year old university student, who was diagnosed with lymphoma at 19. Initially, she was told that the risk to her fertility was small and though she was offered the choice of freezing eggs, she was also told about poor success rate (as compared to embryos). Eventually, she had to undergo a stem cell transplant – and there was no time to think about harvesting eggs. She was provided enough information on the potential impact on fertility. However, there was no further discussion following treatment. She was worried about her periods not resuming and was referred to an endocrinologist

15. I brought it up at every appointment I had. ‘Oh, I’ve not had a period, I’ve not had a period yet’. And the doctor I saw every time just said, ‘We hope it will come back. We’ll wait and see’…. So it ended up being a year basically. I turned round to the doctor and I said, ‘Look, I’ve not had a period for a year and I’m worried about it’! and this was the first doctor that had sort of sat up and (did something about it). So then I had blood tests and that’s when I got referred to the endocrinology unit and that’s when it finally all started to be a little bit addressed…. So I went to see an endocrinologist and that was a horrible experience, because they were just very matter of fact and very blunt about it (A….).

16. she was upset at his lack of empathy at what this meant to her and not offering any support: • … I do understand that my fertility wasn’t the priority of a single doctor in the hospital. Their priority obviously is getting me better, is fair enough. But I just always felt that as a young woman, someone maybe should have recognised that and been able to talk me through at least over a longer period of day, rather than being dropped on me like a bombshell.

17. The second example is of N…. Her periods stopped following the first cycle of chemotherapy and she intuitively felt that her periods would not resume. N..... was told by the gynaecologist about ovarian failure who had a discussion with the couple about whether they wanted to have children and alternate routes to parenting/ conception: Right, the options that she gave me were (finding) egg donor, which could have been from anyone from my background that, you know, similar background as me or my, you know, a family member, like a sibling…, if they wished to. That was one route. The other route she talked about was adoption, which I already knew being a …. So … they were the two main options that were, you know, discussed. However, at that point, I didn’t want to (laughs) raise a family and I still don’t, so….

18. … because I think my generation, there’s a lot of my friends who have not got children and they enjoy their life as it is (laughs) like me and (partner) do, and I’m quite happy that I can actually go out and not have any responsibilities (laughs). And I’ve got a really close relationship with my niece, so, you know, that’s all I need (laughs) in terms of that. So I don’t think (not) having children really has impacted on my life at all, and it’s not something I know that we’re gonna want in the future. Yeah, I mean (partner’s) side of the family, his older sister, she’s in her forties they decided not to (have children), same as us. My brother hasn’t (got kids). So yeah, I think we’re all kind of (different).

19. Conclusion Q1: what do our findings tell us about the links across cancer, ethnicity? Q2: How far have we moved away frm Sontag’s plea in setting up the Survivorship initiative? The link between treatment and infertility can add to the stigma faced by younger people, especially since the risk is uncertain. Hence, while we need to incorporate the risks to fertility and sexuality posed by treatment related to cancer within public debate on ‘survivorship’, we must be careful about reinforcing dominant discourses on infertility,

20. As cautioned by one of the participants: I’m glad it doesn’t seem to be on adverts or things like that, to try and raise money towards – donate to the charity, ‘Oh, once you’ve been through that treatment there’s a risk that people can’t have children’. There’s only stories every now and again, and I don’t think … no one ever asks me or makes the connection about the chemotherapy and being able to have children. That it would then put people off starting a relationship and things like that (Mike)

21. References Frank, A. (1995) The Wounded Storyteller: body, illness and ethics, Chicago/ London: Chicago Press Sontag, S. (1991) Illness as metaphor: Aids and its metaphors London/New York: Penguin