Table 3.
Exemplar Narratives from Participants on the Value of PFS Associated with Good QoL for mBC Patients and their Families.
| Topic | Exemplar Narrative |
|---|---|
| Importance of progression-free periods for patients with mBC | “That time is extremely important for patients. The mind and the body are connected. So when you're feeling good about your body, your body feels good. You'll have higher motivation, and you want to do more. And the progression-free time period, there are people who create lists of things that they want to do … And that progression-free time period is extremely important for them. It's a very concentrated time, the time period they want to utilize to the maximum.” - Japan Interview Participant |
| “Me, as a patient, I'm not thinking in terms of is the tumor shrinking from this size to another or is it stable and not growing? As long as it doesn't impact my daily life, my family life, I would prefer to have it stable instead of shrinking.” – ECPC Participant | |
| Maintain some sense of normalcy, including working |
“The grief people experience from losing their jobs and careers is immense. People with metastatic breast cancer want to contribute to the world and they can contribute to the world, but most people do not understand this because they don't understand metastatic cancer.” – MBCN/SHARE “Prior to me being a cancer patient, I always saw on the news and read that, ‘Oh, 1 in 12 cancer patients is filin’ for bankruptcy. There's a lot of financial toxicity.’ Insurance is everything. My insurance is through my employer and also covers my husband's care, who is two-time cancer survivor and my kids. I just thought that it was really important for me to try to stay working as long as possible.” - MBCN/SHARE Participant “I think one of the things in the Black community is that we don't always talk about our diseases with our families. We often hide it. A lot of moms will hide it from their families because they're the breadwinner. I think [NAME] mentioned the fact earlier, 77.3[%] of Black moms are single moms. If you add any disease to that, it's a very difficult situation. I think that caregiving is a whole ‘nother conversation, I think, in the Black household where the mom is the sole breadwinner and has young kids and has to take care of them ‘cause she really has no one.” – MBCN/SHARE Participant |
| Impact of disease and treatment on caregivers | “I think that's an enormous area where people need support, particularly the case for parents with young children where they need to be in hospital all the time. I think carers, particularly at work, have an issue. I'll say the second point is about their own physical and mental health, very often, is something that is put to one's side. If carers don't look after themselves, they can't look after the person they're supposed to be caring for properly.” – ECPC Participant |
| “I don't know if it's Japanese culture, but many people feel very resistant to let the others know what's going on inside the house, inside the family. So, for that reason, they do not want to bring in outsiders into their home environment. Therefore, there are quite a few people who do not want to have professional caregivers to come in and help in the home setting. That means that the family members, the limited number of family members, will have to carry more burden.” – Japan Interview Participant |