On the 16th of March 2022, the Mosaic Community Trust collaborated with Imperial College, London to undertake a community awareness session on breast cancer.
Breast cancer was considered a priority area to do a session on, as it continues to be associated with fear, stigma, and discrimination in the community. Due to this some women remain hesitant to attend screening appointments when invited.
The session was developed and hosted by Mosaic in collaboration with Soh-Yon Park (Researcher at the Institute of Global Health Innovation), Madhu Agrawal (facilitator for the session; previously Breast Cancer Nurse Specialist, and now Macmillan Cancer Information and Support Manager), and Halle Johnson (Public Involvement Officer at the Patient Experience Research Centre).
The purpose of the session was to:
- Understand current perceptions & experiences of breast cancer from the local community
- De-bunk current myths held by the community about breast cancer and increase awareness of what breast cancer (it’s symptoms, who it affects and treatment options) and breast cancer screening actually is
- Educate community members on how to check their own breasts and what signs and symptoms to look out for
To address these aims, Madhu, the facilitator on the day covered four main areas in the session:
- What breast cancer is and what the symptoms are
- Breast screening processes in the NHS and what happens if you get an abnormal result
- Treatment options for breast cancer
- Breast awareness (including how to check your own breasts for symptoms).
Throughout the session the community were invited to share their own perceptions of breast cancer as well as their own, and their family and friends, experiences related to this topic.
Insights from the session
During the session Madhu shared what it would be like going to a breast screening mammogram, she highlighted that each experience may be different as each nurse is different. She noted that there will always be some pain/discomfort, but it shouldn’t be excessive. She also explained that the plates used will often be cold. The discussion focused on ways in which women may feel comfortable to attend their screening appointment including:
- Bringing a friend/family member to their mammogram appointment
- Communicating to their nurse if they feel too much pain or if they are too rough
- Asking their doctor to have an ultrasound instead of a mammogram if they would like
After this discussion on breast screening, a conversation was started about breast examination. The women were asked when they thought they should examine their breasts, and then a practical demonstration was given by Madhu. One of the women, who had had breast cancer herself, kindly volunteered to be a model for the demonstration, as she wanted to give back and ensure others knew the right way to check their breasts.
Most of the women did not currently examine their breasts and were not aware of the correct way to do this or what to look/feel for. It was explained that women should examine their breasts once a month, and this should start from puberty. Madhu also explained that during menstruation, pregnancy and breast feeding, breasts become ‘lumpy’ so while women should continue to examine their breasts during this time, lumps during this time aren’t often a cause for worry/concern. Madhu explained that when examining their breasts, they should be looking for a small ‘pea’ sized lump, with those in attendance comparing this to a ‘chickpea but smaller’
Concerns about Breast Cancer Screening and Treatment
As part of this discussion several of the women reflected on their own or family/friends’ experiences and concerns of having delayed appointments for breast screening follow-up, or long waiting times for these. It was felt that this was a priority area which needed addressing. Particularly because of the anxiety and stress which occurs when waiting for appointments and treatment which is heightened for this group, who already hold many fears around cancer, and which is further exacerbated through family/friends who may think the woman is, for example ‘lying about not receiving the letter or hiding her results’ when it’s actually just the delay in receiving the results.
Further concerns were also raised about appointments being scheduled for other hospitals (with more availability), and experiences of GPs being dismissive about concerns around breast cancer rather than listening and referring appropriately if someone is concerned about breast cancer due to symptoms they have experienced, or due to a family history.
Overall, it was discussed that there is a massive gap between primary care and secondary care, women did not find remote consultations helpful, and many shared bad experiences with their GP.
Suggested improvements to breast cancer screening
Although education is one part of improving attendance at screening appointments, more needs to be done to address other issues linked to non-attendance. This includes:
- Reducing waiting time between appointments (especially important for communities where anxiety and stress about cancer is heightened);
- Further collaboration with community partners who can provide holistic care and support, for instance if it’s a long wait time for an appointment, treatment or results they can refer women to a community organisation (such as Mosaic) who can support them through anxiety, stress, and fear during that time.
- Providing breast screening appointments in familiar environments (i.e., hospitals they have been to before and that are close to home)
In addition, GPs and staff working in breast cancer screening services need to be aware of cultural factors and perceptions feeding into fears/anxiety around cancer, and be flexible to individual’s preferences for attending, for instance, an ultrasound instead of a mammogram, and for earlier screening if this is causing increased anxiety.
What impact has the session had on the local community?
- Through the session we were able to de-bunk myths currently held by members of the community about cancer and were able to improve knowledge and increase awareness about breast cancer which have since been shared more widely with the local community through our community ambassadors.
- At the end of the session, those attending had changed their attitudes on attending their breast screening appointment when invited. While at the start two-thirds of the group said they would not attend their appointment, by the end the majority of women said they would attend.
- We were able to highlight key areas and ways for the women to communicate with their GP about breast cancer concerns, care and/or treatments. Including empowering women to:
- Use the word ‘breast’ (previously women who have been shy using this word said ‘chest’) in their communication
- Know they have the right to request a mammogram if they have any concerns regarding family history of breast cancer
- Know they have the right to request an ultrasound instead of a mammogram if they don’t feel comfortable
- Know they have a right to bring a friend or family member with them to their mammogram
- The insights from this session have been shared with the Imperial College Healthcare NHS Trust breast cancer screening team and the wider NHS London Breast Cancer Screening Programme team, as well as key researchers working in breast cancer across Imperial College, London to further inform their service provision and research.