MBC participants (n = 16) were mostly Caucasian (86.7%) and non-Hispanic (93.3%), see Table 1. The mean age was 55.62 years. Most women were on their third or greater line of treatment (68.5%). The analysis revealed five major themes: 1) shock and devastation of the initial diagnosis; 2) feeling as if the sharks are circling; 3) cancer is a rollercoaster with never-ending treatments; 4) individual definitions of quality of life; and 5) you are not the person you once were.
Theme 1: The Shock and Devastation of the Initial Diagnosis
Participants expressed reactions to being told of their MBC diagnosis for the first time. Several suggested they were overwhelmed and in shock, making it challenging to comprehend the information and the next steps. A participant described the incident by stating, “ I think people are a little bit distraught at the beginning, and you can’t really absorb a lot of what they are trying to educate you about or tell you about, so especially if the doctor is trying to tell you something and it is just going in one ear and out the other because you are in shock.” Participant 10 (age 58, 10 years since initial diagnosis). Similarly, participant 15 (age 47, 3 years since initial diagnosis) noted, “at first it was a little bit on the shocking side, getting everything together, I think there were a lot of moments of why me.”
Furthermore, some women focused on the words they were told at the initial diagnosis, such as ‘metastatic’ or ‘stage four.’ To them, these words were correlated with death or having a poor prognosis which made them feel devastated or scared about their future. One participant verbalized that “the metastatic word is pretty terrifying, and you hear the news in the movies, you know that metastatic is just a pretty ugly diagnosis.” Participant 14 (age 45, 10 years since initial diagnosis). Participant 16 (age 47, 11 years since initial diagnosis) shared a similar sentiment stating, “at first when I was diagnosed, it was just devastating because I thought stage four cancer, that’s it I’m going to die, you know.”
Theme 2: Feeling as if the Sharks are Circling.
Participants verbalized a sense of impending doom due to the lack of treatment response and symptoms that came along with the disease or the treatment itself. One participant described her experience dealing with the effects of chemotherapy, stating, “I went through four cycles of chemo every three weeks and that was a lot…it was after the chemo I wanted to die I thought I would die.” Participant 7 (age 66, 6 years since initial diagnosis). While another discussed the feeling relating to the symptoms expressing, “I was very ill and I didn’t feel well for months and I said I was dying, I told my husband I was dying before I even knew what I had and I was willing to die if that’s what I had to do because it was like I can’t live like this.” Participant 8 (age 52, 1.5 years since initial diagnosis).
Additionally, some participants perceived the MBC journey as endless, with death always a looming presence. They also described various emotions that arose as they dealt with the idea of MBC and the treatments they had to undergo, including despair, heartbreak, fear, entrapment, anger, and hopelessness. One participant conveyed how she felt after being told the chemotherapy was not working, stating, “we did all the harsh chemotherapies, and nothing seemed to work, and the cancer kept growing so then my oncologist said, “well let’s just try and maintain instead of curing and that was another heartbreak.” Participant 16 (age 47, 11 years since initial diagnosis). Similarly, participant 1 (age 59, 9 years since initial diagnosis) expressed MBC as a never-ending journey and a multitude of feelings recounting, “so it is just…you know I write on this site that I find so comforting, it is [name of site], and I have been writing this series of how I am just swimming in the water and the sharks are circling because I feel a lot of despair then we say, alright, what are our options, what are the side effects, how long are we on it, a lot of the times [my doctor] says it doesn’t really matter what you chose because you will be on everything for the rest of your life…I feel like I am trapped…I am a victim.”
Theme 3: Cancer is a Rollercoaster with Never-Ending Treatments
Concerns about physical and emotional well-being from undergoing extensive treatments and testing were issues conveyed by study participants. Furthermore, participants expressed how going through multiple highs and lows affected several aspects of their life. One participant described her MBC experience as a rollercoaster, stating, “It sucks. It is a physical and emotional roller coaster, and so it makes you want to scream, like when you are on a roller coaster. I would say there are two distinct effects, and one is you are dealing with the physical side, and one is you are dealing with the social, emotional side of it.” Participant 3 (age 49, 5.5 years since initial diagnosis). Another participant expressed a similar feeling indicating, “it’s like a rollercoaster, it’s been a roller coaster ride for me because I will be okay, and then something else will happen, and I’ll get worse, and then I’ll get better, and then I’ll get worse.” Participant 13 (age 60, 3 years, and 11 months since initial diagnosis).
Participants also discussed the multiple time points in their cancer journey, with several having more than one period of disease-free state and incidence of recurrence before receiving their diagnosis of metastatic disease. Participant 5 (age 41, 5 years since initial diagnosis) provided an insight into the different parts of her cancer journey, sharing, “I had a reoccurrence in [year] and that was the lymph nodes…and then I went through chemo and radiation at that point and then I was disease free and then metastatic last year” and described it as overwhelming. Furthermore, the alterations in treatment modalities and medications some had to undergo either because they received a new diagnosis, or because the drug was not working caused feelings of frustration and disappointment. One of the participants verbalized this, stating, “it’s a little frustrating for sure because I wanted to just get to a place where we are able to find something that works.” Participant 2 (age 29, 1 year and 2 months since initial diagnosis).
Theme 4: Impact on Quality of Life
Quality of life has multiple meanings and depends on numerous factors unique to each individual. Participants in the study had varying views on what quality of life meant to them; however, the most common factors described as having the most influence were physical, functional, spiritual, and emotional health. One component of physical health that negatively influenced the quality of life of several participants was the symptoms they experienced from cancer and its treatment. Participant 1 (age 59, 9 years since initial diagnosis) noted, “I can’t just get up and go, I can’t exercise, can’t have the same life, can’t have this crazy hair like I used to. I always feel tired, run down. Quality of life for me is just one night being able to go to bed without worrying whether you’re going to wake up four times in the night screaming because you have cramps in your legs, jumping into the shower to put heat on them.”
Some participants described the loss of their identity and how that impacted their quality of life. One participant stated, “you are forever no longer who you were before, everything is revolving around staying alive and functioning, and it’s all related to the cancer. For me, the other stuff went to the back and my relationships have deteriorated.” Participant 3 (age 49, 5.5 years since initial diagnosis). While others described how the actual diagnosis of MBC affected their quality of life. A participant echoed this by sharing, “to be honest, not having to worry about metastatic breast cancer, that would increase my quality of life quite a bit. It’s a rather large dark cloud, and it’s always there.” Participant 6 (age 62, 3 years since initial diagnosis). However, some participants indicated they felt their quality of life was good. They described relying on their support system and focusing on living in the moment. Participant 17 (age 66, 6 years since initial diagnosis) stated, “[quality of life] means that I get up every morning and I look forward to living, I know my days are probably numbered, so today I make the most of every day, and I enjoy every day.”
Theme 5: Not the Person You Once Were
A reverberating consensus among participants was that their MBC changed multiple aspects of their lives. For many, MBC created a positive shift in their spirituality and outlook on life as they emphasized enjoying the time they had left and making certain things a priority. One participant shared, “I’ve learned a lot about myself, and I’ve learned how to slow down and appreciate, you know, life for what it is… it’s given me an opportunity to kind of focus more on spending time with my children.” Participant 2 (age 29, 1 year and 2 months since initial diagnosis). Similarly, participant 8 (age 52, 1.5 years since initial diagnosis) stated, “I am very type A, and I was a very anxious worried person, and now I don’t worry about the small stuff anymore, so I’ve put things in perspective, and my daughter said that I’m actually a happier person now.”
Nevertheless, MBC is a difficult diagnosis, and for several participants, it negatively affected certain parts of their life and their perception of themselves. Participant 7 (age 66, 6 years since initial diagnosis) expressed her experience stating, “I think there is a feeling of value and purpose that just gets ripped out from you because you have to spend your energy and your time going through treatments, getting those things scheduled, facing the recoup time.” Other women discussed how it affected their psychosocial well-being. One participant stated, “if you are doing well and you look okay… it is easy for people to forget about it. But you don’t ever forget about it, you think about it all the time. It’s kind of a background noise in everything you do, and so it is an isolating thing.” Participant 3 (age 49, 5.5 years since initial diagnosis).