Research has repeatedly shown that positive relationships improve the quality of life for breast cancer patients.
Having strong social support is known to decrease depression and anxiety in people with advanced cancer—but friends and family are often unprepared to provide this support.
Metastatic Breast Cancer
Once cancer has spread, or metastasized, to other areas of the body, it is no longer considered curable.
Treatments may be available that can slow the cancer and extend life, but in the case of metastatic breast cancer, fewer than 3% will live longer than five years after their diagnosis.
When a loved one is facing incurable cancer, it’s normal to feel overwhelmed and unsure of what to say or do. Should we put on a happy face and tell them to keep their chin up—or maybe avoid the topic altogether?
What Can I Do?
A team of British researchers led by Dame Lesley Fallowfield, professor of psycho-oncology at Brighton and Sussex Medical School, is working hard to find out how best to tackle this conundrum.
In July 2023, Sussex Health Outcomes Research and Education—Cancer published “Living with metastatic breast cancer (LIMBER): experiences, quality of life, gaps in information, care, and support of patients in the UK.” in the journal Supportive Care in Cancer.
They asked 143 women with metastatic breast cancer to weigh in on exactly what behaviors from loved ones they found most helpful, and what they found unhelpful.
Here is their practical advice:
Offer to Help with Household Chores
Many respondents had caring responsibilities for children, grandchildren, other adults, or pets. Over half (58%) indicated that their condition had very much affected their family’s well-being, and 20% reported it had greatly affected their responsibilities.
These women appreciated help with daily tasks such as:
- Help with childcare
- Rides to medical appointments. One patient shared her appreciation for a friend who “came to every appointment and wrote down what was said so that I had a record to read back.”
- Picking up groceries or other essentials
- Taking their dog for a walk or offering other pet care
- Putting meals in their freezer
- Help with household cleaning or hiring a maid service
Let Them Talk
The respondents overwhelmingly appreciated having someone who was simply willing to listen to them. One said, “My cancer is like an elephant in the room, people don’t know what to say.”
Patients offered these thoughts about what they found helpful:
“A nurse sat with me for over two hours when my first line (treatment) failed. She really listened; it meant the world to me.”
“My daughter listens and shows that she loves me. Listens to me talk about my cancer and doesn’t ignore it.”
“Let me talk about end of life.”
“Don’t ignore my cancer.”
“Listen to my fears, laugh and cry with me.”
Keep Them Involved in Life
Sixty-eight percent of the women in the study reported feeling the need to stay busy. They described wanting to get out of the house, doing things that made them feel normal, and trying to “live every day the best you can.”
Quality time with loved ones was especially cherished, such as:
- Coming over for a visit to cheer them up
- Planning a trip out to share a meal—or bringing them some home cooking to share
- Making memories. One patient in the study shared how much it meant to her that her loved ones raised money to take her on a family trip. Making memories doesn’t have to be expensive or involve a lengthy vacation. Offer to plan any activity you can do together such as a family BBQ, ladies’ night, movie night, or taking the kids to the zoo—whatever your loved one enjoys.
- Checking in with a quick call or text to ask how they are doing
Don’t Avoid Them
The subject of cancer raises uncomfortable topics, and it is normal to struggle with your own grief about a loved one’s diagnosis. This discomfort can lead to avoidance of the person with cancer at a time when they need support the most.
Women in the study reported feeling ignored and isolated, especially when they found out their cancer had returned or advanced.
Respondents shared heartbreakingly similar stories:
“I got attention at the beginning and cards, but then it fades away and people get lonely.“
“Some family members have just withdrawn. They don’t want to know because it’s too hard for them.”
“My sister and father do not ask how I am, don’t listen very often, and don’t remember when I have appointments, which hurts.”
“I was really sad seeing two friends cross the road so they didn’t have to speak to me. I know they saw me.”
Stay Away from Toxic Positivity
Friends and family struggling to show support may try to offer reassurance that everything will be fine.
While this may arise from good intentions, respondents found offering false hope or speaking in platitudes to be frustrating and minimized the seriousness of their condition:
“Saying things like you can beat this, you’re strong—no I can’t, it‘s terminal, it’s never going away.”
“It’s not at all helpful. It’s almost like they want to be hopeful and positive for themselves because they just can’t deal with the diagnosis.”
“Being told that I could be hit by a bus tomorrow, and none of us know how long we have got.”
“It isn’t kind to be told about people who have survived cancer. It means they don’t understand that stage 4 is incurable.”
Don’t Give Advice
Some people try to show support by offering medical advice or suggesting unconventional alternative treatments. Women in the study found such advice very unwelcome.
From one patient, “I hate it when they do that. While you want to stay hopeful as a patient, you need to be realistic as well. This disease cannot be cured.” Advice from the respondents included:
- Don’t suggest “miracle cures” or quick fixes
- Don’t give diet advice
- Don’t “Google” cancer treatments or share theories you may have read about online. Patients in the study preferred information from reliable websites suggested by their clinical team.
Don’t Be Overprotective
Sixty-four percent of respondents wanted to continue supporting themselves and their families. Those who could continue working also reported better quality of life than those who didn’t.
The ability to maintain as much independence as possible was considered important and women in the study reported frustration with behaviors they found patronizing such as:
- Being told to “take it easy”
- Being treated as fragile, or like a child
- Feeling pitied
The Need for More Resources
Close friends and families play a key role in providing emotional, social, and practical support to patients with metastatic cancer, yet many respondents felt that their loved ones were largely unsupported.
The LIMBER study reveals the need for better resources for informal caregivers.
Dame Lesley Fallowfield, who led the study, and her team are using the survey results to develop educational materials aimed at relatives and friends of patients with metastatic breast cancer.
The first of these is a short film entitled, “They Just Don’t Know What to Say or Do.” Intended as a practical guide for friends and family, the film features real quotes and anecdotes from patients in the study.
Further analysis of the research is ongoing, and the team intends to develop further educational material for patients, their families, and healthcare professionals. Said Dame Lesley, “many people worldwide are still living with breast cancer. The research we conduct can improve the quality of their lives through . . . the provision of good quality information, education, and support services.”
References
Fallowfield, L., Boyle, F., Travado, L., Kiely, B., Jewell, P., Aubel, D., and Cardoso, F. (2021). Gaps in care and support for patients with advanced breast cancer: a report from the advanced breast cancer global alliance. JCO Global Oncology 7, 976–984. doi:10.1200/GO.21.00045
Fallowfield, L., Starkings, R., Palmieri, C., et al. (2023). Living with metastatic breast cancer (LIMBER): experiences, quality of life, gaps in information, care, and support of patients in the UK. Support Care Cancer. 31(459). https://doi.org/10.1007/s00520-023-07928-8
Yang, Y., Lin, Y., Sikapokoo, G. O., Min, S. H., Caviness-Ashe, N., Zhang, J., Ledbetter, L. & Nolan, T. S. (2022). Social relationships and their associations with affective symptoms of women with breast cancer: A scoping review. PloS one, 17(8), e0272649. https://doi.org/10.1371/journal.pone.0272649
