People diagnosed with advanced-stage cancer who have hope and positivity, as well as family support, are able to live well during the end stages of the disease, according to a Canadian study.
The research was published online on Dec. 12, 2018, by the journal Qualitative Health Research. Read “People With Advanced Cancer: The Process of Living Well With Awareness of Dying.”
"While there is a growing body of research focused on select aspects of people's experiences with advanced cancer, there is little research examining the process of living with advanced cancer across the trajectory towards death," said Carole Robinson, professor emeritus of nursing at the University of British Columbia Okanagan Campus. "Even patients whose prognosis is limited are living longer and want to live well, making this issue a global concern."
Advanced-stage breast cancer is breast cancer that has spread beyond the breast to nearby tissues, such as the skin or the chest wall, or that has spread to parts of the body away from the breast, such as the bones or liver. When breast cancer spreads to parts of the body away from the breast, it is called metastatic breast cancer. Metastatic breast cancer is advanced-stage breast cancer.
According to the researchers, more than 32 million people are living with cancer around the globe. In the past, studies have looked at the concept of living well with a chronic illness, but not specifically cancer. While those studies suggest that it is possible to live well with advanced cancer, little is known about how people do this or how they can be supported in living well.
How the study was done
For this study, the researchers analyzed transcripts of interviews with 22 people who were living with advanced-stage cancer for at least 3 months:
- 12 people in the study were men
- 10 people in the study were women
Other characteristics of the people in the study:
- their ages ranged from 45 to 83 years
- 9 were married
- 6 were single
- 5 were widowed
- 2 were divorced
- 15 lived in an urban area
- 7 lived in a rural area
- 18 lived with family members
- 4 lived alone
During the interviews, the people were asked open-ended questions, such as, “How would you describe your life with this disease?”
The people in the study helped the researchers understand that living with advanced-stage cancer is a process made up of five interconnected phases, with some of the phases repeating:
- living with advanced cancer
- sharing the illness experience
- reconstructing life
Each phase was part of a larger process, which the researchers called “living well with awareness of dying.” The researchers found that the phases were revisited over time as the cancer, side effects, or other circumstances changed and new challenges came up.
The people in the study explained how they developed strategies for living with advanced-stage cancer, including making life adjustments, maintaining a positive attitude, remaining hopeful, and accepting their “new normal.”
All the people said they began their experience with advanced-stage cancer in the struggling phase. While many of the people made the decision to stop struggling for a period of time, they found themselves back in the struggling phase as new challenges came up, such as when a treatment stopped being effective.
Over time, the people said they realized struggling against the disease created even more difficulties for them. Ultimately, they realized this was counterproductive so they made a conscious choice to let go of struggling. Some people said it was the only choice they could make while living with the uncertainty of advanced-stage cancer. They said letting go of struggling allowed them to accept their life circumstances at some level and learn to live alongside the disease.
“I understand that this disease is very present in our society and I happened to get it,” one person in the study said. “And I accept it in the sense of normalizing it, trying to live with the disease, not denying it or not to be angry all day because it has touched me, but try to cope and become a little friend of what I carry with me … I mean to accept, to normalize it, to cope with it.”
“The importance of family love and support cannot be underestimated,” Robinson said. “For all the participants, awareness of dying led them to focus on living well. Sharing the experience with loved ones softened suffering remarkably. They were aware they did not have time to lose.
“Although it might happen in moments, participants were able to put advanced cancer behind them and live life rather than living their illness,” she added. “Living in the moment enabled deep appreciation of everyday things such as the beauty of a flower garden.”
What this means for you
If you’re living with advanced-stage breast cancer, you may feel angry, scared, stressed, and/or depressed. Or you may feel more matter-of-fact about it. There is no right or wrong way to feel. You need to do and feel what is best for you and your situation.
This study is one of the first to look at how people come to terms with a diagnosis of advanced-stage cancer, and you may find some of the ideas helpful.
For the people in this study, living well involved a balance between dependence and independence, being able to see the positive and maintaining hope, even toward the end of life.
"The participants in this study worked hard to live a life rather than live an illness," Robinson said. "The implication here is to support the positive. It has been found in previous research that hoping for a cure when cancer is advanced is not lack of awareness — it can be a choice in focusing simply on positive possibilities."
For more information on living with advanced-stage breast cancer, visit the Breastcancer.org Metastatic Breast Cancer pages.
You also can visit the Breastcancer.org Discussion Board forum Stage IV and Metastatic Breast Cancer to connect with others who’ve been diagnosed with advanced-stage disease.
Written by: Jamie DePolo, senior editor