Breast Cancer Voices helped a PhD researcher from the University of the West of England understand the experiences and support needs of informal carers – wives, husbands, partners, family members or friends – of men with breast cancer.
Made up of people whose lives have been changed by breast cancer, Breast Cancer Voices use their diverse experiences of breast cancer to shape and improve our work and change the future of breast cancer. These Voices help us accelerate research and provide vital support, every way we can.
Caring for men with breast cancer
In the UK, around 370 men are diagnosed with breast cancer every year (compared to 55,000 women). But, to date, there has been no research to understand the experiences of informal carers of men with breast cancer in the UK.
Beth Herring, a PhD researcher, is looking to close this gap. Her study aimed to better understand the impact of the disease on people providing care for men and identify areas where carers may need support.
This research could help to find new ways we can support men with breast cancer and the many family members and friends who are impacted by their diagnosis. Breast Cancer Voices played an important part in making it happen by sharing their views and experience through research interviews. 12 participants took part in the study.
The impact of being a carer
Carers taking part in the research felt that caring for a man with breast cancer impacted many aspects of their lives. They talked about the practical and emotional ways in which they provide support. Often they see themselves as the ‘gatekeeper’ to many aspects of the patient’s life, taking on responsibility for their medical appointments and being the main contact for healthcare providers and professionals.
Many carers felt that they had to be the source of strength for the patient. They were responsible for maintaining normality in life, especially when it came to children. For some, the physical and psychological effects of caring had a negative impact on their own health.
Lacking information and support
Most of the carers spoke about their shock reaction to the news of their family member or friend’s diagnosis – most had never heard of breast cancer in men.
They found it difficult to access information about male breast cancer. Much of the information available presents breast cancer as a female disease and, as a result, most of the advice and guidance is focused on women.
For instance, advice such as ‘wear a blouse and skirt to mammogram appointments’ and diagrams of female breasts made carers feel unsure of how the disease impacts men and how they could best support their partner or family member.
They also noted that men with breast cancer felt excluded and sensed that there was a noticeable difference between support available for men and women.
The result of the lack of awareness of male breast cancer led to many carers taking action to raise the profile of the disease. One challenged an insurance company for discriminatory provision of care, another carer held meetings with directors of hospitals and some set up a campaign to raise awareness of the disease in men.
Improving support for the future
The vast majority of carers felt that their social lives and relationships outside the house were impacted. They noted that they were not offered formal support, often expressing feelings of isolation and loneliness. As a result, they didn’t know about their rights, benefits or services they may be entitled to.
Based on her research, Beth Herring highlights three ways we can improve support for the future:
- Spread awareness that breast cancer can affect men and highlight how the disease impacts the people who care for them.
- Ensure that men are represented in breast cancer information resources by using more inclusive language, gender-neutral terms and pictures of male mastectomy.
- Provide more online groups or forums dedicated to carers who are looking after men with breast cancer to create a safe space for them to support each other emotionally and share experiences or advice.
Beth’s research has shed a light on the many challenges faced by people who care for men with breast cancer, highlighting how we can improve support for the future.
If you have an experience you would like to share, you could help others who may feel alone. Find out about opportunities to use your voice by joining our Breast Cancer Voices community. Researchers need you for your voice and experience, so be sure to check out opportunities to participate.