This afternoon I attended the Asian Breast Cancer support group at the Nightingale Centre and Genesis Breast Cancer Prevention unit in Manchester. This group was set up by Prof Anil Jain and meets on a regular basis to support Asian women with breast cancer.
I learned some really interesting things:
- Breast cancer is less prevalent in South Asian women than in the Caucasian population, however the gap is closing.
- For South Asian women the average age at diagnosis is approximately five years lower (55 years) than in White women (60 years) and, usually, the younger you are the more aggressive the tumour
- South Asian women are more likely to have biologically aggressive breast cancer, such as higher-grade tumours and more lymph node involvement, thus resulting in a poor prognosis, which results in increased mortality rates
- Many South Asian women don’t know the above; they believe they aren’t likely to develop breast cancer so don’t attend breast screening.
- This might be because many South Asian women believe that because they don’t smoke or drink (although some do) they can’t be at high risk of getting breast cancer.
- Because of culturally-related taboos, South Asian women can find it hard to talk about breast cancer, breast screening and self-examination of the breasts. They therefore don’t have the opportunity to raise concerns with their female friends and relatives, and generally resort to being diagnosed with breast cancer when they have advanced symptoms (which is too late and why mortality is higher in these groups).
This might explain why breast cancer screening uptake in some South Asian communities is as low as 25%!
You might think there are some generalisations here but I’m reflecting back the discussions of the group which included women from the South Asian community – so I’m pretty confident these perceptions reflected some truth about behaviours!
But what does the research say about breast screening behaviours in South Asian women?
We heard from Pooja Saini (from the South Asian Women’s Access to Cancer Screening Group) that although lots of research has been done (her group has unearthed 80 high quality research studies) no one has pulled together all this research to be able make sense of it. However, Pooja’s group has been funded to do this very thing and we all await the results of their systematic review of the literature with much anticipation!
We’re really not so different
Yet, despite these South Asian-specific issues it became apparent during the afternoon that there are lots of similarities between women of all ethnic groups when it comes to their anxieties about breast screening.
For example, we heard that many women across all ethnic groups feel poorly informed about what breast screening is. They want more information.
It became clear that women want more information BEFORE they attend for breast screening. The best time would be when they get their invite letter because this is when they need to make decisions about whether to attend or not. This supports the idea of patient choice. If a woman is to make an informed choice about whether to attend for screening she needs good quality information before she turns up for her mammogram.
Not surprisingly, because women are all individual with unique personal situations, emotions, beliefs and needs, they want many different things in terms of information:
- a wide range of topics from how to get to the hospital/mobile unit to what happens about getting results
- differing amounts of detail : some prefer a very brief description of the procedure others want in-depth explanations about risk and benefit
- a range of formats: (pictures, videos, images and text)
- different languages
These different needs based on individual preferences cut across all ethnic groups so we need to be careful about assuming all South Asian women want ‘x’, all Caucasian women want ‘y’ and all black women want ‘z’.
However, the channels through which awareness raising activities are carried out may indeed need to be different for different ethnic groups.
What came out of the discussions was that South Asian’s have access to strong community groups presenting the ideal opportunities to talk about breast screening and breast cancer. Interventions targeted at South Asian women and their families (because Asian males are strongly influential in the community) are therefore being carried out in such community group settings. These initiatives are being driven by prominent members of the community – ‘community champions’, and there were some amazing examples of such women at the Asian Breast Cancer support group.
These types of groups are less commonly found in Caucasian communities (at least this is my perception as a middle-aged, white woman) so other methods of raising awareness need to be considered. This might be where on-line resources, such as our WoMMeN hub could be more successful.
What was exciting today was the passion and enthusiasm, shared by all those present, about breast screening and cancer. This passion clearly goes beyond words. There were lots of examples of great initiatives taking place: community discussions; patient involvement in research; patient involvement in the design of leaflets and websites and innovative uses of technology.
The Asian Breast Cancer group will, no doubt, continue to meet and develop a shared understanding of breast screening and cancer from the patients’ perspective. We now need to join up and share some of our resources. We must also invest in good quality evaluation of these interventions in order to convince the NHS to adopt them as standard tools. This way they don’t remain local ideas dependent on the enthusiastic few for their success.
Do you think the WoMMeN hub responds to the diverse needs of women?