54 women consented to participate and completed the online survey whilst 36 eligible women participated in interviews. Reasons for non-participation in the interview included no longer wanting to participate (n = 1), not being contactable (n = 13) or not meeting eligibility criteria (n = 3). Table 1 summarises all participants’ socio-demographic and clinical information. Mean age was 57 and many were university educated (n = 34, 64.15%). 54% (n = 29) were diagnosed with early stage breast cancer (stage 0–2). Overall participants were psychologically well; although anxiety was higher than in the general population [33] and fear of cancer recurrence was high (M = 17.61, SD = 6.14) with 32% of participants meeting the consensus FCR clinical cut off (> 22) [34].
Table 1
Participant Characteristics
Age: mean (SD) range
|
|
57 (9.96) 35–77 years old
|
|
|
Number of participants (%)
|
Education
|
None or Primary
|
2 (3.77)
|
|
Intermediate Certificate/Year 10
|
1 (1.89)
|
|
Higher School Certificate/Year 12
|
3 (5.66)
|
|
Technical Certificate
|
13 (24.53)
|
|
Tertiary
|
34 (64.15)
|
Employment Status
|
Full Time
|
17 (32.10)
|
|
Part Time
|
16 (30.12)
|
|
Retired
|
14 (26.42)
|
|
Unemployed
|
3 (5.66)
|
|
Home Duties
|
3 (5.66)
|
|
Student
|
0 (0)
|
Language Spoken at Home
|
English
|
53 (100)
|
|
Other
|
0 (0)
|
Stage Diagnosed
|
0
|
1 (1.89)
|
|
1
|
15 (28.30)
|
|
2
|
14 (26.42)
|
|
3
|
19 (35.85)
|
|
4
|
0 (0)
|
|
Unsure
|
4 (7.55)
|
Treatments Received
|
Surgery alone
|
2 (3.77)
|
|
Surgery + Chemo
|
9 (16.98)
|
|
Surgery + Radio
|
8 (15.10)
|
|
Surgery + Chemo + Radio
|
32 (60.38)
|
|
Radio alone
|
2 (3.77)
|
|
Hormone Therapy
|
41 (77.36)
|
DASS-21 Depression Subscale
|
|
|
|
0–4
|
35 (66.04)
|
|
5–6
|
11 (20.74)
|
|
7–10
|
3 (5.66)
|
|
11–13
|
3 (5.66)
|
|
14+
|
1 (1.89)
|
DASS-21 Anxiety Subscale
|
|
|
|
0–3
|
31 (58.49)
|
|
4–5
|
10 (18.87)
|
|
6–7
|
4 (7.55)
|
|
8–9
|
3 (5.66)
|
|
10+
|
5 (9.43)
|
DASS-21 Stress Subscale
|
|
|
|
0–7
|
37 (69.81)
|
|
8–9
|
6 (11.32)
|
|
10–12
|
4 (7.55)
|
|
13–16
|
4 (7.55)
|
|
17+
|
2 (3.78)
|
FCRI-SF
|
0–12
|
10 (18.87)
|
|
13–21
|
27 50.94)
|
|
22+
|
16 (30.19)
|
Participants reported on average 3.06 effects from treatment, the most prevalent being joint pain (n = 22), neuropathy (n = 14), fatigue (n = 13) and cognitive impairment (n = 12). Most participants did not distinguish between long-term side effects and late effects.
Based on the framework analysis, four distinct themes emerged from the interviews: (1) late effects awareness, (2) framing and coping, (3) uncertainty and (4) management. Supplementary quotes are provided in Online Resource 2. Figure 1 depicts the thematic map of relationships between themes that influence emotional responses to late effects in breast cancer survivors.
1. Late Effects Awareness
Participants’ awareness of late effects influenced the meaning they assigned to them. Some women who were well informed about late effects experienced worry and concern about the perceived severity of the effects. Yet others reported that being informed provided them agency and reduced the uncertainty associated with their potential onset and management. Of those who reported being unaware of late effects, some reported high anxiety upon developing late effects as they assumed symptoms signified a cancer recurrence. Interestingly, despite learning about late effects years after completing treatment, most women stated they would have made the same treatment decisions.
I think for a lot of people information is power and if you have that knowledge you can act on it and do something about it (P23)
The breast being you know enlarged... and sometimes a little bit of pain there with it and so you worry that you’ve got another cancer in that breast (P21)
Participants made recommendations about how to better manage patients’ expectations of late effects in order to mitigate negative emotional responses. Many women desired early knowledge about chronic or permanent side effects to set more realistic expectations for what life post-treatment would look like. Many expressed a desire for more information about when to expect late effects and how to manage them, so as to avoid mistaking late effects for cancer recurrence, and prevent onset or ameliorate their severity. Many participants recommended patients should receive this information in a dedicated late effects consultation after completing active treatment, separate from their final treatment consultation.
If you are like okay you don’t have a choice because you need this treatment but know on the other side you will have to deal with neuropathy you have already taken most of the anxiety away (P13)
Had I known more prior I possibly wouldn’t have ended up with as much lymphoedema as I do (P52)
2. Framing and Coping with Late Effects
Surviving cancer changed each woman’s attitude toward life. This influenced how they later framed and coped with late effects. Some participants reported they perceived their late effects as daily physical reminders of their cancer experience and this prevented them from moving on.
It does make me anxious ...any time my heart beats a little faster you think oh my god it was the radiation (P21)
For many, late effects acted as triggers for fear of cancer recurrence with women reporting they were fearful of planning for the future, had trouble sleeping, and in severe cases, had ‘panic attacks’. Many reported dismay or disappointment about the restrictions late effects placed on their life, precluding a return to normal. In contrast, one participant could positively frame her late effects as confirmation that her treatment was effective.
The reason that my body aches is because I have no oestrogen and having no oestrogen is a good thing so I’ve managed to convince myself that having my body ache is a good thing (P09)
Some women framed their late effects through the lens of social comparison. Upon hearing of other survivors’ lack of late effects (through online forums or personal relationships), many women reported concern and frustration with their own poor post-treatment recovery. In contrast, some participants reported experiencing gratitude upon observing others who were worse off but also worry that their own situation may worsen.
You will meet up with someone who is really struggling with their lymphoedema and it’s pretty horrifying to think that that could happen at anytime (P51)
Women who perceived their trust in their medical teams had been breached reported negative responses, as they perceived late effects to have been avoidable. However, women who trusted their medical teams perceived late effects as a necessary evil and a ‘small price to pay’.
If you want to be around [in ten years] you are going to do what they say and you are going to swallow those pills (P30)
Receiving validation for their experiences with late effects, either from medical teams or online forums, also influenced women’s emotional responses. Participants reported relief after learning that others experienced similar symptoms. However, others who perceived their experiences were dismissed reported frustration, worry and even anger.
The surgeon and the oncologist are like ‘nah it’s all in your head’ [breathing difficulties due to damaged lungs], ‘it’s not a problem’. And it’s like no I do notice a difference, you know. I am the one that is breathing here (P50)
3. Uncertainty about Late Effects
Emotional responses were also influenced by the uncertainty surrounding the duration, eventual severity and impact of late effects. Women were ultimately worried about losing control over their quality of life. Participants reported they were unable to plan ahead and were fearful of being unable to fulfill their work and social roles. This in turn resulted in women experiencing anxiety, bitterness and resentment towards their late effects, making coping more difficult.
I think to myself well yep that wasn’t something I signed up for (P30)
Despite the uncertainty, some participants reported acceptance. These participants perceived it was futile to worry about something out of their control, yet some remained sad about the limits late effects placed on their lives. Additionally, participants also used hope and avoidance to assert some control over the uncertainty. Some were optimistic that a “wonder pill” will be available by the time they develop late effects whilst others reported they will “cross that bridge” when it comes, thereby delaying any emotional response.
4. Management of Late Effects
Many participants reported being proactive in adapting to a “new normal”, modifying behaviour or engaging in preventative self-management to reduce the physical and emotional impact of late effects. This increased coping and reduced uncertainty, and in turn, negative responses to late effects. Some strategies were contingent on women’s knowledge about late effects such as risk minimisation behaviours (e.g. healthy diet, regular exercise) as well as various treatments (e.g. supplements for joint pain, lymphoedema therapists). Other reported strategies were based on behaviour change (e.g. changing shoes they wear, having smaller expectations for what can be achieved in one day).
The more I was able to start to make a change and see the differences and not be at the impact quite as much, the more I was kind of like now I’m okay (P34)
However, when management strategies were ineffective, many participants experienced greater worry, concern or frustration.
I think I’m good you know I am really on top of it and then out of the blue there could be problems and I feel like I am back at square one again in my resentment and pity and grief and frustration (P51)