The women who took part in the study had a mean age of 50, had an average of two children, the majority were married (n = 8/13), university-educated (n = 8/13), and had a family history of breast cancer (n = 7/13). Among the 13 women, seven were found with a malignant tumour and six with a benign tumour.
At the pre-diagnostic period, 9 out of 13 women scored above the clinical cut-off for anxiety and all scored above normative values for uncertainty (normative values = 33.7) with an average score of 60 (SD 12.9) on a range of 23–115 (see Table 1). A two-tailed Pearson correlation coefficient test between anxiety and uncertainty revealed a strong association of 0.757 (p = 0.003).
The triangulated results from the quantitative and qualitative data are separated by categories: high versus low anxiety and uncertainty; prior to and after testing to reveal themes that could help explain their emotional experience.
Pre-diagnosis I: Accounts of women whose scores were below the cut-off for anxiety
Two themes best describe the experiences of the women with high uncertainty but low anxiety (4/13): use of positive reinterpretation and support received by clinical staff.
Use of Positive Reinterpretation: The four women in this category, although experiencing high levels of uncertainty, maintained their anxiety level below the cut-off by viewing their situation in a more favourable light, as an opportunity. That is, whenever they worried about their upcoming test results, the women described using repetitive positive thoughts and holding on to the belief that their suspicious breast abnormality would probably be benign. They viewed their situation as positive: “it is just the healthcare team erring on the side of caution (Participant #2).” The four women also described the use of calming self-talk to help reinterpret negative anxiety-provoking thoughts into positive thoughts “I am able to get through it. I can deal with this…I’m strong (Participant #1).” Another woman described how she practiced letting go of a situation she had no control over and how that process left her feeling less anxious “so I said to myself until I have more information I am just going to leave it and not try to think about what it could be (Participant #2).”
Support by clinical staff: All the four women in this category mentioned how the support and reassurance that they received from the clinical team helped them to remain calm: “it’s most likely not cancer (Participant #9).” The clinical nurses’ explanations as to why further tests were needed were also mentioned as helpful in reducing the four women’s uncertainty and anxiety.
Pre-diagnosis II: Accounts of women whose scores were above the cut-off for both anxiety and uncertainty
For the larger group of women whose scores were above clinical cut-offs for both the anxiety and uncertainty scales (9/13), two themes best describe their experiences: 1) additional testing generating uncertainty, and 2) the ability to maintain responsibilities.
Additional testing generating uncertainty: These women described their lack of understanding of the additional testing which was being carried out, and how the situation of additional testing led to much uncertainty. They also talked about feeling anxious while waiting for the test results from their additional testing. Notwithstanding the small sample of 13, this finding is aligned with the association found with the quantitative measures of anxiety and uncertainty before receiving their diagnostic results (p = 0.003). One participant described her anxiety arising from a statement made by her health professional that the participant could not decipher the true meaning of “they want to do a biopsy to check on some cells... What exactly did she mean? I consider this a statement with no ending (Participant #8).” To another woman, the feeling of uncertainty occurred because the necessity of additional tests made it hard for her to view the situation in any other way than “catastrophic” (Participant #9).
Concerns over maintaining responsibilities: Women who feared the “worst-case scenario
Women who expressed fears and increased perception of being found with cancer described how they were affected by intrusive thoughts of cancer and had difficulty carrying out their daily responsibilities such as childcare. They described their pre-emptive worrying about the potential cancer diagnosis and recounted their thoughts about how it would negatively and significantly affect their obligations, responsibilities and lifestyle, citing examples such as their ability to be a good mother. For instance, a mother with a young child at home described the situation in this way:
... I was worried; I have a seven-year-old boy and when you don’t know...what’s happening, you think about the worst-case scenario...cancer and then the treatment and how this is going to affect your lifestyle and the fact that you have a...very young child. I worry about the future, as a mother… Participant #5.
These women, expecting the worst-case scenario, explained their experience prior to testing as being frozen by their fear and having difficulty functioning in their daily tasks.
Finally, one contextual similarity was found among the women of this category (above clinical cut-offs in both anxiety and uncertainty): their shared family history with cancer. They experienced the highest levels of distress, with scores up to 73 with a possible maximum score of 80.
Three days Post-diagnosis – Receiving a cancer diagnosis
Among the group who received a cancer diagnosis (7/13), five had anxiety scores above the cut-off, and two for uncertainty. Three major themes were described by those receiving a cancer diagnosis: 1) as “life-changing”; 2) as having to face many uncertainties and stressors, and 3) for two women, as a “relief”.
Cancer is life-changing: A cancer diagnosis was described by these participants as life-changing with many uncertainties. One of the participants captured this feeling when she explained how she felt after hearing she has breast cancer, “I mean how can you not be upset, your whole life is completely discombobulated at that point because you have so many things to think about and your whole life is going to completely change Participant #3.” The women described feeling anxious about how they would be able to maintain their daily routines, for themselves and others, such as their weekly physical activity routine. Half (4/7) of the women described how overwhelmed they felt and how upset they were at their bodies for having let them down. They portrayed the situation as one of the most stressful events of their lives. Yet some women said that they felt thankful for the way the healthcare team attempted to reassure them, providing them with immediate details of treatment plans and that they felt supported as they moved into the next phase of being a cancer patient. In the days following the diagnosis, the women described how they reached out for support from family, with one specifying how she sought refuge in her religious faith.
Uncertainty and anxiety with the treatments and potential side effects: The uncertainty of their treatment plan and the unfamiliarity with potential side-effects left women feeling anxious, “...I have heard that you’re really sick in chemo, but are you sick the whole time or are you just sick on certain days and then the whole idea of losing your hair (Participant #3).” Another woman described how her treatment plan, which consisted of chemotherapy, was going to affect her ability to enjoy the seasons and holidays, “...I knew it was a year, a year by the time you go through all this (chemotherapy). So then in your mind, you’re thinking, okay well I’m going to miss...the fall and Christmas. This isn’t going to be great” (Participant #8). To obtain their diagnosis, women went through additional testing such as biopsy. One woman described this experience as a funeral moment.
A sense of relief: The sense of relief expressed by two women in the cancer group was described by three certainties “know[ing] what the [diagnosis] was Participant #3”, “knowing cancer had not metastasized (Participant #8)”, and “being recommended treatment that did not include mastectomy (Participant #11)”. Knowing their breast abnormality was actually cancer provided a sense of certainty to some of the women. They now knew what they were dealing with (cancer) and were able to formulate treatment plans in line with their wishes. This, in turn, gave them a feeling of control over the situation. As described by one of the women, “When they recommended a lumpectomy...tsunami of relief rush[ed] through me because I was so afraid of losing my breast that when they said lumpectomy, I was like, fine...where do I sign? (Participant #11)”.
Three days post-diagnosis testing results – Receiving a benign diagnosis
Among the group who received a benign diagnosis (6/13), all had anxiety scores below cut-off with uncertainty remaining high for two. Two themes describe their experience at post-diagnosis for this subgroup: a) absolute relief and b) adjusting to the diagnosis.
Absolute relief: The six women described a sense of relief upon hearing that their suspicious breast lump was benign. The women described the event as a huge weight taken off their shoulders allowing them to return to their daily routine and habits, as well as validating their initial instincts that the lump would be found to be benign or their suspicions unfounded. One participant (Participant #10), who had advocated for a referral to the RDC to receive additional testing to confirm a previous diagnosis of benign fibroadenoma, explained that she felt relief from having it “confirmed” by a biopsy.
Adjusting to the diagnosis: For two women with a benign diagnosis, uncertainty levels remained above normative values at T2 and for three women at T3. Despite their diagnosis, two of these women were scheduled to receive a lumpectomy and further pathological testing to remove abnormal tissue formation. They described the need for further investigation using language that was suggestive of residual uncertainty such as how tumour growth is unpredictable, and no diagnosis is ever 100% certain, thus warranting the removal of abnormal growth, as depicted in the following statements: “...we cannot predict every single detail of what’s going to happen next, so...when I got the diagnosis that it’s a great possibility that it’s 100% benign but there is still a chance…(Participant #4)” and “there is a possibility that it could be a type of benign tumour...that could get larger, so the recommendation is to have it removed (Participant #7).”
Another participant who continued to present with residual uncertainty three days post-diagnosis despite receiving a benign diagnosis reported that she understood her diagnosis as having both a malignant and benign form of cancer that could later develop into full cancer.
Three weeks post-diagnosis – results for all
At three weeks of post-testing results, anxiety and uncertainty levels did not reveal many changes quantitatively except for an increase in those from the benign group with two now experiencing anxiety above the clinical cut-off. These two participants both described that they expect to eventually receive a cancer diagnosis. One woman describing her belief as “the negative now is that I am waiting for it...I missed this one...but I figure it’s going to hit me at 60, 65...so you know other women would say, oh my God it’s a blessing, it’s fantastic, I’m saved! No, I’m waiting. I’m waiting for the shoe to drop (Participant #5)”.
The Need for Support During the Diagnostic Period
The women expressed a need to receive details of the day’s unfolding and especially what medical procedures were going to be done, how, and why, in advance of the day of testing. They wanted to know if they needed to take pain medication prior to coming to the clinic and if it was it best to be accompanied. On the day of receiving their results, half of the women would have wanted more information on their diagnosis such as a written report on the stage of their diagnosis. One woman suggested that a lecture on breast cancer diagnosis and the possible stages that might be found during the testing would help “as a way to brace [themselves]” (Participant #8) for all diagnostic possibilities. The women recommended that they be asked if they would prefer to receive such a lecture while waiting to obtain further testing or while waiting for their results. Some of the women viewed the option of knowing in advance the possible implications of being diagnosed with cancer as a means by which to lower their uncertainties and distress.
In addition to their information needs, most of the women described a need for supportive care. The women described a need for some type of preparatory emotional support or counselling to help acquire and build adequate coping skills prior to attending the RDC. The women suggested having a one-time telephone call from a nurse before and after attending RDC to assess their support needs and coping skills. They also suggested having educational sessions on the upcoming procedures to reduce the uncertainties of the testing day’s event.