Access to information.

Information pertaining to cancer and its treatment. Many of the women in this study

acknowledged the demand put on patients to engage in their medical care, including treatment- related decision making. However, few felt they had the necessary information to make

appropriate treatment decisions and care arrangements that were consistent with their lives and preferences. When information was provided, women explained that it was usually written and packaged for mainstream audiences and was not always easily translatable to their specific circumstances. Short medical appointments and rushed care providers further limited women’s opportunities to communicate these challenges. This often truncated discussions of the broader

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everyday contexts in which women’s illnesses unfolded and through which care decisions were made. For instance P11, who was 32 years of age at time of diagnosis explained that much of the breast cancer information she received from the hospital was written for women much older than her and thus tended not to include information about family planning and fertility. This left her with a significant knowledge gap that rendered it difficult to make treatment related decisions:

P11: We wanted someone to talk to us about, you know, what are the experiences like for someone who has had fertility preservation and is trying to figure out, okay, should they use a surrogate or should they, you know, try it for themselves, and what are the impacts of that for my health; because I would need to get off Tamoxifen earlier than the standard five years. They

[oncologists] wouldn’t even entertain the conversation. ‘We can’t advise you against best medical evidence’ is a response I heard a lot. I didn’t need a green light, I just wanted to have a conversation. I needed that information, the pros and cons, to make an informed decision and if you don’t have that information you need to refer me to someone who can help.

From the information she garnered, P11 understood that a five-year post-treatment Tamoxifen regiment was standard, but explained the conflict of this information with a desire to have children and wondered if there were safe exceptions to the standard. Translating dominant medical and treatment recommendations to her familial circumstances proved challenging and she felt that few doctors were able (or willing) to comment on health-related issues that did not relate directly to her cancer and that none provided referrals to specialists who could help fill this information/knowledge gap.

Countering the strict temporal constraints they experienced in traditional medical encounters, women described ELLICSR as a place that permitted time in and for care. In a broader

discussion of her experiences with a psychologist at ELLICSR, P11 continues the discussion of fertility addressed above, but offers a far different care experience:

P11: I’m at a different life stage than most women with breast cancer, and of course my priority is my health but it is also important for me to carry on with my life and part of that means having kids. Having someone you can trust to talk to about making decisions or dealing with situations... And also for me dealing with my own fears and, you know, concerns about if I do this [stop Tamoxifen treatments], what are the pros and cons type thing. Like I said, there was this resistance [from the oncologist] to talk to me about my fertility. You wouldn’t believe how hard it was to get this information, it took me probably a year of consistently trying to find someone who would talk to me seriously about it. Dr. X [psychologist at ELLICSR] was so helpful. She listened to my situation and she connected me with a fertility specialist who works with young adults with cancer so that I could make the most informed decision that made the most sense for me and where I’m at.

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P11 described the benefit of being able to participate in a more holistic conversation that took both her physical health and psychosocial wellbeing into consideration. Being connected to, and having the opportunity to consult with, a fertility specialist in advance of treatment decision- making provided P11 with important technical and professional knowledge that she needed to make an informed decision about the treatment path that was best for her.

Information pertaining to the side-effects of diagnosis and treatment. Many women in

the study explained that they lacked sufficient information about side-effects they might

experience and about how to cope with such things as fatigue, pain, neuropathy, extreme weight loss/gain, and cognitive struggles. For instance, P12 describes the onset of side-effects as a shock and explains that this provoked additional, and avoidable, distress:

P12: Of all the different doctors and fellows that I saw, none prepared me for what to expect in terms of changes. I mean, I knew that I was going to probably be nauseous and that my hair was going to fall out because of the chemo, and ok, well that’s more common knowledge stuff, but I had no clue that I would lose feeling in my fingertips and that I would struggle to remember where I put my keys or that I wouldn’t be able to concentrate to read a book. No one

prepared me for that, so when it happens you think something is going wrong, that the cancer is getting worse or that it’s spreading. Your mind races in a million directions, none of them pleasant.

Many women in this study suggested that if they were going to effectively manage side-effects, they needed to know what to expect and be provided information on how to cope. Few felt that there were adequate opportunities to garner this information in hospital.

In describing efforts to manage treatment related side-effects, most women discussed the importance of being able to connect with and learn from those that they perceived to be “in the same boat” and explained that ELLICSR permitted them with opportunities to foster these

connections in ways that medical waiting rooms did not. They explained that the experiential and

embodied knowledge of “cancer friends” was highly valued, providing them with “trustworthy”

and reliable information about the course of cancer and treatment. In a broader discussion of an informal support group of cancer friends, P8 emphasizes the importance of embodied knowledge as a source of information and highlights the emotional benefit of being prepared for the side- effects of treatment:

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P8: It helped me to understand and to be less worried about symptoms or signs that I was going to be experiencing. For example, with the chemo, people told me that I was going to lose my hair, lose sensation in my mouth, my nails were going to get brittle and all those things were going to happen, so, now I know rather than panicking about them when they happen.

Many women also described the benefit of being able to share health information with others, including advice, personal experiences of medical events, and personal accounts of learning to cope with or adjust to the side-effects of treatment:

P3: It’s comforting to speak to people who have gone through it because they can relate to your experiences. So you’ll tell your doctor ‘I have tingling, numbness in my fingers’ and they brush it off, ‘Oh yeah, that’s normal’ kinda thing. But a cancer patient will say ‘Oh yeah, I had that, it was awful but I did this and it helped.’ They’ve found ways of managing it.

P3’s narrative is one of many that emphasized the value of embodied knowledge. The

information generated through lived experience was perceived to offer practical assistance in ways that others, including health care providers, could not.

Information pertaining to support services. Nearly all of the women in this study

stressed their need for information about insurance coverage and financial support, additional clinical supports (e.g., psychological, pain, and fertility), sources for obtaining wigs and prosthetics, and/or information on how to ‘break the news’ of their diagnosis to family and friends (particularly children). Most women felt that their medical team was unaware of available support services in the hospital and community. Instead, most explained “stumbling” upon this information too late and emphasized that standardized delivery of this information early on in the treatment process would have been beneficial:

P12: I don’t know how much attention is paid to the ways this diagnosis completely changes your life and so there doesn’t seem to be a big awareness around that. I know they’re [medical providers] busy, but I just needed some information, like a list of different support programs; and what would that take, 10 seconds? Instead, I ended up finding most of the information on my own, but didn’t always know what to trust or what programs were worth following-up on.

P12 explains that one’s life often becomes unhinged in the face of a cancer diagnosis and that there is a need for care and support that extends beyond the biomedical realm to address these life changes and challenges. While she took on the work of locating this information herself, she

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explained that she did not always know what information to trust and which programs were best suited to her particular needs.

Referred to by some women as “knowledge brokers,” ELLICSR staff were discussed frequently for their authority and expertise in the area of psychosocial oncology, care programs, and support services. Below, P11 highlights the difficulty she experienced with securing information on support services within the hospital and emphasizes the benefit of ELLICSR in filling this information gap:

P11: I got an appointment with a social worker here at ELLICSR and that was very helpful in thinking through some of the ways I could get additional supports. That’s probably where I got the bulk of my resources from. So that was very helpful because I found that it was very hard to come by, at least it was for me and it wasn’t until I came here that I started to get answers and really see things happening.

Staff assisted women in locating information suited to their specific support needs. In a photograph she titled “A Warm Environment Filled with Information,” P10 explains that she secured most of her information at the ELLICSR library and emphasizes the value of having expert staff on-hand to assist with locating appropriate materials:

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P10 emphasized the importance of sharing her diagnosis with her children and of doing so with care and sensitivity; access to reliable and expert-endorsed information permitted her the opportunity to do so with confidence. Similarly to P10, many women in the study experienced worry about ‘breaking the news’ to their children, with some situating this pressure in relation to their position in the home as a mother. For instance, P6 explains:

P6: As a woman, a mom, you are the pillars of your household; everyone depends on you for everything – the cooking, the cleaning, the help with school work – and so when you get sick I think it is more present in the home…I mean to say, in the routine of the home because the whole house is under threat. Because of this, you need to be very careful in how you approach these situations

[disclosure of diagnosis to the members of the household].

P6 alludes to the different anxieties women might experience when disclosing their diagnosis to their children and of how (and why) the receipt of this news might be taken-up differently by the children themselves.

2. Self-management support. Many of the women in this study described processes of