Participants incorporated technoscientific identities into their sense of self to different degrees, some not at all. Being diagnosed with breast cancer was not enough to develop a TSI. The development involved four major processes. First, women sought knowledge and immersed themselves in biomedical information. Secondly, they used this information to locate themselves within a technoscientific framework. Thirdly, they had institutional support from within and beyond the medical system, which included reinforcement from medical authorities and/or rationalised biomedical discourse. Finally, they considered their biomedical classifications, rather than their suffering, to be determinant factors in knowledge synthesis and decision making. As women developed ways to manage their illness, the technoscientific classification sometimes became the frame of reference for some to develop an illness identity. Assimilating expert knowledge into lay understandings of the illness led these women to incorporate technoscientific classifications into their sense of self as a form of embodied self-awareness.
The process of developing a TSI begins with the search for knowledge, and all women were primed to develop TSIs as they became informed about breast cancer. Through a variety of channels, including books, medical journals, Internet sites, questions to medical staff, support groups, personal contacts, and educational meetings, women tried to discern who they were in relation to their medical classifications. Am I estrogen positive? Am I in remission? Am I at increased risk for a soon-to-be-discovered BRCA3 genetic mutation? Situating themselves within a technoscientific framework was an effort to understand diagnosis and risk, make decisions about treatment, and exert agency in doctor-patient interactions. During this process some women immersed themselves in information to such a degree that they developed a level of expertise that became a regular part of their lives, and sometimes their sense of self.
Information immersion and self location in the biomedical framework
Samantha is a secretary who explained that she ‘didn’t know anything about anything’ when she was diagnosed at age 45. Following a routine mammogram, the doctor asked Samantha to schedule a biopsy and an appointment to review the results:
I went into his office and in one full breath, without even any explanation, he just kept pointing to the report. He said, ‘This report reads that you have LCIS and DCIS which are lobular carcinomas in situ, and I am very concerned. I have taken this report to a board…of 15 members…we have agreed that what you need to do is have a bilateral mastectomy.’ I just sat there completely aghast, not understanding what he said to me. I understood bilateral mastectomy… It didn’t make sense why I needed to have one, but I knew that term…so I asked for additional explanation. He said, ‘I just told you what you have…with what you have, this is what you need to do. I want you to schedule an appointment to see an oncologist…I want that appointment to be done in two weeks. Within a three week time period I want you to schedule to have a mastectomy.’ I just sat there…dumbfounded. I left his office, went to the ladies room, broke into tears, pulled myself together, came back out, made the appointment via his nurse.
Although Samantha had a bachelor’s degree, she had no background in medicine or medical terminology. She did not know what the lab report meant, or that an oncologist was a cancer specialist. No one accompanied her to the doctor’s office that day, and she had no idea she was about to be diagnosed with breast cancer.
Poor doctor-patient communication can encourage people to seek medical expertise on their own. Likewise, Samantha urgently began the process of becoming a lay-expert:
I immediately called a Cancer Resource Center...they gave me…Dr. Susan Love’s Breast Book. I read through the entire book, went back…the next day and said, ‘There’s one chapter…that talks about what I’ve been diagnosed with. I can’t make a decision on one chapter. What else do you have?’ They said, ‘Nothing.’ I said, ‘I need more research. I need other books. I need research papers. I need to know what I’m going to be dealing with. I can’t make a decision without it...’
Medical knowledge felt compulsory for Samantha, and she immersed herself in medical terminology, research reports, and scientific journals. Through her research she developed a working knowledge about breast cancer and biomedicine that empowered her decision making:
I read 56 articles out of radiology, oncology, and surgery magazines, specifically ones that would target breast cancer surgery. You can learn a totally new language if you are forced to…over the period of three months I did the research. As I went through the research, I realised DCIS was stage zero…so I had the time to…completely understand what it was I was dealing with and make a good, logical decision about what was right for me…I am constantly online now…to stay up with the research...[emphasis added]
In the process of gathering and assessing information, Samantha situated herself and her diagnosis within a body of expert knowledge. Her goal to comprehend the science of breast cancer enabled her to think of herself as proactive, informed, and empowered.
During our interview, Samantha looked back at the journal she kept during this time. She said, ‘it amazes me that I was able to do what I did, knowing absolutely nothing about breast cancer…to truly understand it as well as I did and to stand up for myself against the doctors.’ Samantha thinks of herself as ‘DCIS Stage Zero’, monitors her status through techno-scientific means (semi-annual mammograms and blood tests), and interprets her embodied experiences through specialised language that requires ongoing self-education. She calls herself an advocate who teaches others how to do what she did. She carries two summaries on DCIS/LCIS:
I have two versions…the simple version and the version that has some more technical terms in it. I did that…to be able to give to people a…brief overview…so…they would understand what…I was talking about. I carry that with me all the time.
The social status attributed to medical science transfers to those who understand and know how to use it. Samantha believes that using the language of medical science in medical encounters increases the likelihood that people will feel empowered, ask questions, and make their interests count. Samantha’s effort to remind herself of her LCIS/DCIS status is evident in her desire to discuss the technical details in brief with almost anyone she encounters. Samantha’s biomedical classification has become part of her illness identity.
When individuals immerse themselves fully in technoscientific information that is supported by doctors, biomedical discourse, or elsewhere in the medical system, they develop the potential for developing a TSI. Most participants discussed the pressure to use information to become active in managing their illness. But for some, information immersion and self-location in the biomedical framework was overwhelming. These women never reached the point of integrating biomedical classifications into their sense of self. Clarissa was diagnosed six years prior to our interview, at age 46. At that time, ‘there was no place to go for information about the science and the research…None of the support groups in the area had that, and the doctors tell you what they want you to know and never seem to offer much more.’ Unlike those who do extensive research to learn the language of technoscience, Clarissa ‘didn’t even know where to look’. When asked how she made treatment decisions, she said:
I just did what the surgeon recommended…I just couldn’t seem to do the research on my own…I got completely overwhelmed and confused…I didn’t know what to believe and what not to believe, what applied to my diagnosis, or what else I could do besides medical treatment to improve my health and chances of recovery…I was at the mercy of the system.
Clarissa’s statement illustrates feelings of disempowerment and a belief that understanding biomedical information is necessary for empowered decision making. Following medical recommendations without doing research is a substandard choice.
Two years after Clarissa’s diagnosis, ecologist Sandra Steingraber gave a lecture about her book, Living Downstream, which traces connections between cancer and the environment. Steingraber had been diagnosed with cancer in her twenties, so she had a unique perspective that combined extensive scientific training with research and personal experience. Clarissa said, ‘I was transformed...’ After the lecture, two dozen women lingered for several hours. Clarissa met women with ‘lots of information and understanding.’ One woman was a biology professor at a local college.
We were…amazed by how much research she had done on her own…She understood …medical reports, clinical trials, all this stuff. One woman suggested that we…meet with the professor periodically…There were about 15 women who wanted to come. The professor agreed, and we ended up forming a group and meeting monthly at the college where [the professor] taught. [emphasis added]
Clarissa was not confident in her ability to synthesise scientific information, so she valued the professor’s ability to do this ‘on her own’, revealing the importance of independent learning.
With the right guidance, Clarissa could access biomedical information. The professor helped her assess information and understand what applied to her. Three years later, Clarissa took a course through the National Breast Cancer Coalition (NBCC) called Project LEAD.
I attended four days of highly structured learning on the science of breast cancer…Most of the participants were breast cancer survivors and some ran agencies concerned with breast cancer issues. They were highly motivated and we learned much from each other in our small task groups. It was exhausting, yet fascinating to learn how each group utilised their different strengths and skills.
Over time Clarissa developed a greater understanding of biomedical information. The more she learned, the more at ease she felt about her decisions. In turn, she began to share what she learned. Clarissa’s example shows that TSIs are an identification for those who have the privilege to access biomedical information, the ability to educate themselves, and the intention to immerse themselves on an individual level. Whereas the professor researched information in isolation and then shared it with others, Clarissa learned in relation to others so her knowledge remained external to her sense of self. She did not use her biomedical classification as a framework for developing an illness identity.
Correspondence with the Medical Authority
Information immersion, biomedical classification, information and support from the scientific and medical community are necessary for the development of a TSI. Patricia, previously a registered nurse, places herself at the biomedical level and interprets her embodied experiences in biomedical terms. Diagnosed at age 51, Patricia had worked with terminal cancer patients prior to moving to the US from Europe. She understood medical terminology, cancer progression, treatment protocols, and outcomes. With this background Patricia easily applied biomedical information to her illness experience:
With my knowledge…if I have a headache for a few days, I think, ‘Oh God, have I got a brain secondary?’ My friend who has no knowledge would say, ‘Oh, I had an awful headache the other day…’ Nothing…that used to be a headache is [just a headache].
Patricia gives herself three days to get over any perceived bodily malfunction before going to a doctor for laboratory confirmation. She monitors herself regularly and sometimes sees a doctor on a monthly basis. She has completely immersed herself in biomedical information and does not easily think of herself in other terms.
During her ten year association with breast cancer, Patricia’s knowledge sometimes interfered with the doctor-patient relationship. She recounts a conversation with her oncologist:
I said, ‘It could be widespread. We don’t know…I haven’t had my bone scan, so I haven’t had my tumor markers down.’ He said, ‘You have far too much knowledge.’ I said ‘But, I can’t not have the knowledge. You can’t suddenly pretend you don’t know what you know.’ He said [that] I was adopting an entirely negative attitude…It was really that they [wanted to] take over, and it would…be better if I would just shut up.
If a patient’s use of technoscientific information does not correspond with prevailing biomedical discourse, it can threaten medical authority and undermine the TSI. Despite negative interactions with this doctor, Patricia’s TSI was firmly incorporated and she was willing to suppress her feelings and prioritise expert knowledge. She just found a different expert, an oncologist who was more sympathetic to her situation. This oncologist agreed to tumor markers and a bone scan, but the results did not warrant less aggressive treatment. Patricia believed in the technoscientific enterprise and was willing to adopt a treatment protocol that intuitively she did not want.
Patricia’s knowledge enabled her to voice her opinion and seek reinforcement for her TSI even when some doctors objected. Patricia was critical of Tamoxifen, a drug which has been a standard therapy for some kinds of breast cancer to reduce recurrence. The side effects include hot flashes, vaginal dryness and bleeding, blood clots, and endometrial cancer (Love 2005). Until recently, these and other side effects were not well documented. Patricia said, ‘I think it’s criminal that they’re giving people this stuff without real…knowledge of what it does…they…do not talk about side effects.’ According to Patricia, a doctor at a breast cancer conference in 2000 told the audience that there were no side effects to Tamoxifen. Following his presentation, Patricia approached the doctor and said, ‘Well, I didn’t want to disagree [with you] in front of all of these people, but I’m on this drug and there are huge side effects’. He replied that it was ‘so rare, it’s not worth mentioning’. For Patricia, it was not only worth mentioning, it should have been studied, documented, and openly discussed with patients. Following this interaction, Patricia joined a community-based organisation committed to evidence-based medicine. There, she found a receptive audience for questioning Tamoxifen, and reinforcement for her TSI.
Classification versus suffering
When one develops a TSI, the classification (rather than the suffering) urges people to maintain the beliefs and practices to sustain it. In pursuit of a cause, several participants considered genetic testing. While only 2.5–5 per cent of all breast cancer cases involve an inherited BRCA1 or BRCA2 gene that has mutated, women from Ashkenazi Jewish families are more likely than other women to carry them. Studies of Ashkenazi Jewish women with breast cancer have shown that women with a mutation have a 55–85 per cent risk of developing breast cancer during their lifetime (King et al. 2003). The difference in these estimates is substantial, contributing to uncertainty about what to do if one has such a mutation. Risk anxiety may influence decisions to undergo genetic testing or surgeries thought to reduce risk (Hallowell et al. 2004). A participant of Jewish descent was convinced that genetic mutation was the cause of her breast cancer and decided to have DNA testing. Joyce, a college professor, was diagnosed at age 57.
We [the oncologist and I] just got the results of the genetic testing which is negative, but that doesn’t tell the whole story because we have not identified all possible mutations…If you look at family, my mother had two sisters who died of cancer, one of breast and one of ovarian. I have four first cousins with breast cancer. And we’re Ashkenazi Jews. Apparently the incidence is 30 per cent greater among Ashkenazi Jews...By the way, I don’t know if you’ve heard this, but…I’ve heard that BRCA3 is just about to be announced.
As a person with a TSI Joyce assesses, regulates, and controls her body with the desire to transform it with medical knowledge. Even though the results from genetic testing revealed that she did not have a mutation on either breast cancer gene, she is convinced that there are mutated genes scientists are searching for and will eventually find. Her belief corresponds with prevailing medical discourse and cultural messages about the inevitable progress of medical science.
By sharing this new and privileged information with me about BRCA3, Joyce engages her TSI as a person at risk. Joyce had completed treatment and had no signs of disease at the time of our interview. Yet, she believed that her genetic material increased her risk of recurrence, and that she passed an increased breast cancer risk to her daughter. Joyce continues to discuss the possibility of a BRCA3 discovery and its implications:
I will then have to decide if I want to be retested for BRCA3. This is very expensive stuff, of course, and I would not have done it if I didn’t have a daughter, because it doesn’t do anything for me…What it would do for my daughter is the following…
Before Joyce tells me what the discovery of BRCA3 would do for her daughter, she digresses:
What we’ve already done is put her on birth control pills [to] try to reduce the number of ovulations. I was still — at the age of 56 when I started chemo — menstruating regularly and had already been having hot flashes for twelve years…The estrogen was…pouring through the system...I’m now on the estrogen suppressant …Femara …they just stopped a study at the two-year mark, [where] the women were getting Femara after Tamoxifen. I’ve been on [it] for 14 months. They don’t know what it does without having had the Tamoxifen beforehand. Am I not a walking encyclopedia here?
The amount of detailed and specialised information Joyce conveys in the midst of answering a question about genetic testing for her daughter, reveals that she is trying to obtain enhanced knowledge about her risk status. In taking responsibility for her diagnosis and her daughter’s, should it develop, she gains a semblance of control (See Finkler 2000), and she actively (re)constructs her TSI. Joyce is conscientious and reflexive about having become a ‘walking encyclopedia,’ a category she later attributes to ‘mov[ing] through the [medical] system and get[ting] more and more treatment.’ Joyce deeply identifies with a potential genetic mutation. This identification further intensifies her development of lay and professional expertise, which grounds her solidly within the medical system at a biomedical level.
Unlike Joyce, Angela represents a partial adoption of a TSI. She seeks expert information, locates herself within the technoscientific framework, and uses expert information to make decisions and influence doctor-patient interactions. Angela never fully considers her biomedical classification to be the most important aspect of her illness experience. Angela’s diagnosis of inflammatory breast cancer occurred across a two-year period, following a ‘watch and wait’ protocol. She had mammograms every six months. Between visits she noticed a thickening in her breast, followed by swelling and redness. She had another mammogram and ultrasound, followed by a biopsy. Before the results were in, Angela searched the Internet:
Symptoms were a lot like mastitis…I also was reading about something called inflammatory breast cancer, which sounded an awful lot like it. In the end… there really was never able to be a definitive diagnosis…I guess it…isn’t always decisively diagnosed… it didn’t seem to matter…the treatment would be the same.
Despite the uncertainty of her diagnosis, Angela researched how to get a consultation from a comprehensive breast cancer centre. Before she received the biopsy results, she had an appointment with a specialist for a second opinion. Angela believed that becoming more knowledgeable would help her survive:
Angela: When we went to [the comprehensive breast cancer center] the doctor suggested a chemo regimen that was not standard. It wasn’t…experimental, but…wouldn’t be [what] the basic…oncologist might pull off the shelf. This doctor had reason to think it might be a good approach. We taped the session…(my husband and I), listened to all the reasons, and it sounded pretty good to us. When we came back [home], we needed to find an oncologist who would do what we wanted to do. With the information I had, I was sort of coming to them with things, saying ‘here is what I want to do.’
I: Were they open to that?
Angela: The oncologist was a little taken aback…I don’t think it is every day that patients come in with these sorts of cutting-edge recommendations. She talked with doctors [at the center] and found out more about it. When she found out it was being done on a protocol, that it wasn’t just something off the top of my head, she was more open…In these oncology practices, I think they have a cookbook approach: ‘this is how we usually do this standard of care’. When trying to get somebody to deviate from that, sometimes it can take a little persuasion. She went along with it.
Angela was confident in her knowledge from research and consultation with specialists. By thinking of her suggestions as ‘cutting edge,’ she felt secure in evaluating treatment options and pressing for the protocols she wanted. Angela used the voice of medicine to convince her local oncologist that her decisions were sound, and she was not concerned that the oncologist cross-checked her information.
Angela is immersed in breast cancer, identifies with it, and orients much of her energy towards it. When asked about the role of breast cancer in her life, Angela is adamant that ‘It is not something that is behind me. It is everyday, all day, every day…It is…totally in the fabric of my life.’ Angela is referring to the fact that her daily activities and frame of reference revolve around her diagnosis and treatment (Charmaz 1991). Her work in health policy has also started to focus on breast cancer issues. Angela calls herself ‘terminal’ and participates in regular medical surveillance and intervention to manage symptoms and side effects, and to slow progression. Because of a terminal prognosis and an unmistakable level of biomedical uncertainty, Angela is not able to look towards scientific progress for an eventual cure. The fallibility of medical science is palpable enough that she cannot privilege biomedicine over the social aspects of her illness. Thus, she does not fully develop a TSI. Instead, social aspects comprise the bulk of Angela’s illness identity, not her biomedical classification. Her illness identity focuses on transcendence, helping other diagnosed women, and dying well. Although she has not disclosed this to anyone but her interviewer, Angela has planned her funeral and written her eulogy. Suffering and a deep appreciation of her mortality enable Angela to look beyond the biomedical aspects of her illness.