Background
Methods
Participant recruitment
Data collection and analysis
Sample characteristics
Sample Characteristics N = 22 | Frequency (%) |
---|---|
Age at diagnosis | |
18–44 years | – |
45–60 years | 11 (50) |
60–79 years | 11 (50) |
Lymph Node Status | |
Positive | 10 (45) |
Negative | 12 (55) |
Hormone Status | |
ER+ | 22 (100) |
PR+ | 16 (73) |
Her2+ | 2 (9) |
Treatment History | |
Surgery | 22 (100) |
Chemotherapy | 9 (41) |
Radiation | 18 (82) |
AET Use | |
Tamoxifen only | 7 (32) |
AI only | 5 (23) |
Both tamoxifen and AI | 9 (41) |
Did not initiate | 1 (5) |
Persistence | |
Non-persistent | 6 (27) |
Did not initiate | 1 (5) |
Persistent | 15 (68) |
Average Perceived Risk of Breast Cancer Recurrence (0–100%) | |
Non-persistent/did not initiate | 33% |
Persistent | 29% |
Results
Personal factors
Side effects
I think the problem with breast cancer is that you’re not sick, but it [AET] makes you feel worse than you ever felt. The side effects are potentially worse than the disease. It’s like, ‘Why am I doing this?’ It’s bizarre. (AET non-persistent)
My joints and the cramping were sometimes unbearable. I would cry. When it would hit me at night, I would be sound asleep and it would jolt me out of my deep sleep. In the beginning I did not know how to deal with it. It affected me in my working environment and it affected me in my free time, and my family. (AET persistent)
A couple of women took AET medication breaks to lessen their symptom severity and allow them to attend important social events, such as vacations and weddings.I started to withdraw from social situations. I didn’t trust my body to co-operate. I missed out on quite a few things, because I was too afraid that [due to the diarrhea] I would have to run or, change my clothes or have a shower. And make a mess in public. Emotionally, it was devastating. (AET persistent after switching AETs)
Personal beliefs about recurrence and medications
For non-persistent women, their perception of risk related to breast cancer recurrence decreased in the later stages of therapy. After the third year of AET, four (18%) women in our sample discontinued therapy. The perceived risk-benefit ratio appeared to shift for these women; they wanted their lives and bodies back, and to feel normal again.Being on these pills you start to forget what it's for. It's just like taking another pill, but when you get some of the symptoms, when they start to flare up, then it reminds you of actually what you're doing. And then you kind of have to go back into the fight mode again and say, ‘Okay, this isn't going to kill me.’ (AET persistent)
For women who were AET persistent, they described holding positive beliefs about the medication, viewing it as essential to their health. AET was seen as a “security blanket”, an extra layer of protection in their fight against breast cancer and provided a sense of control over their disease: “It was a way to fight the disease and to make sure I didn’t get it back. I read about the side effects, but to me, it was all about winning the battle. I felt I was in control by doing everything in my power to fight this” (AET persistent).I have to say that my very first reaction on discovering I had the sort of breast cancer that needed more than surgery was, ‘I don’t want to take Tamoxifen’. I was prepared for everything else. But, I really, really was upset about the thought of taking Tamoxifen. I was devastated. I didn’t want to take something that was such a long-term thing. I knew I didn’t want to take it, but I knew I had to take it. (AET non-persistent)
For some non-persistent women, these beliefs contributed to their decision to forgo or discontinue treatment early. In contrast, for those women who persisted with AET despite holding negative beliefs about medications, a heightened perception of risk of recurrence outweighed their concerns about taking a long-term medication: “It’s a drug in my body, doing things to me. There’s nothing good about doing it, but do I want to get cancer again? No. I’m more scared to get cancer than I am to go on the pill” (AET persistent).You want the good stuff that is helping your body, but if you don’t know for sure that it’s [AET] really helping your body, then why am I taking it? Do I really know that it’s benefiting me? And that’s probably why I wouldn’t take it again. Or, I wouldn’t do another five years. Because I haven’t seen the benefits yet. (AET persistent)
Social factors
Social support
In contrast, some women found the support from friends or family helped them persist with AET when side effects were bothersome and their commitment to AET waned, as did connections with fellow breast cancer survivors whose stories of overcoming difficulties and persisting with AET encouraged them to persevere with treatment. As well, anecdotal stories of survivors who took AET and survived had a powerful influence on women’s beliefs about the importance of AET, and consequently, their persistence.I want my life to be about other things. So, if people ask me how are you doing, I’m not shutting them out, but I don’t want to bring them into the full depth of it. I’ve been awake since three o’clock this morning ‘cause I woke up soaking wet and I’m grumpy and I don’t want to bring that to my friends and family all the time. So, I don’t talk about it as much with them. My husband knows. But I also don’t want our marriage to be just about that. (AET non-persistent)
HCP relationship
I wouldn’t go to the GP [family physician] because I don’t feel that they’re up on it [AET]. Well, I don’t feel mine is up on all that. They don’t have that knowledge. I think someone dealing with cancer, in the cancer setting, has more details on symptoms from one of those drugs. (AET persistent)
He [oncologist] said you wouldn’t complain if you were on chemotherapy, given intravenously. You wouldn’t complain about the side effects. And I said, ‘No.’ And he said, ‘Well, look at it this way. You are taking a little bit of a chemo every day, and so you just have to learn to deal with it. (AET persistent)
Structural factors
Conversely, women who continued to see an oncologist reported greater satisfaction with the provision of follow-up care as well as a sense of safety and confidence. The specific focus on breast cancer during follow-up visits with an oncologist meant that the importance of AET use and related symptom management issues were more frequently discussed than in follow-up visits with a family physician, when other health concerns took precedence.It [transition to primary care] was annoying because you know that means you’re really getting nothing. No follow up. Because you don’t get any follow up from a GP [family physician]. They say they don’t know anything about cancer, it’s too complicated. (AET non-persistent)
Access to other HCPs, such as nurses and pharmacists with specialized knowledge of cancer and AET, provided a trusted, and often more accessible, resource for women. Inequities existed, however, in access to these supports. For instance, women participating in clinical trials had access to an interdisciplinary team who they relied heavily on to answer AET questions and provide help with managing side effects. Other women were not offered the same access to supportive resources. A lack of access to timely follow-up care meant some women felt abandoned during the survivorship period and were uncertain of how their breast cancer care would be provided, which in turn, influenced their decisions to stop AET early:The medical system is so overloaded and to deal with your GP [family physician] is difficult. They don’t give you much time. You wait two hours to see him [GP], and you get to talk to him for about two minutes. You have to talk kind of fast, and you never get what you wanted to say all out, because you have about two or three minutes. It’s not that conducive to getting a whole lot of help. (AET non-persistent)
I wanted to be followed up. If they’re going to start fiddling with your hormone levels, they should be checking you every three months. There’s no checks and balances. If I had felt I was being followed and people knew what was happening to me, I would have felt much better. I felt totally alone. (AET non-persistent)
Balancing quality and quantity of life
While some persistent women were steadfast in their initial decision, others wavered throughout the course of AET. Several women reassessed their beliefs about the necessity of AET and their overall commitment when side effects intensified, concerns arose about potentially severe or late adverse effects of AET, perceived risk of recurrence decreased, a breakdown in the patient-HCP relationship occurred, and when they were dissatisfied with follow-up care.You’re counting the days and it becomes like you can’t wait for the end [of AET]. I don’t know what’s going to happen. It may come back and I’m going to die anyway. So, I’d rather have a good quality of life while I’m alive and not have side effects. (AET non-persistent)