I was eager to write on this very topic as it has been sitting in my mind since I was a university student. I recently reached out to a patient in West Africa who had been treated at the Breast Care Centre of Excellence. I contacted her for another patient who was seeking support and advice from a survivor. The response I received from the family was that people tend to avoid stigmatisation of breast cancer, and therefore maintain a need-a-to-know basis. Essentially, I was told that the fewer people who knew, the better for the patient. Clearly an answer I didn’t want to hear, but was expecting as I too come from a conservative community.
This triggered me to ponder about women in rural and conservative communities, and the type of healthcare they are exposed to – specifically breast health and breast awareness, and made me think about the time I was volunteering for a breast cancer organisation, called Beautiful Day Foundation, in the States. Here, women living in a big city, like Los Angeles, were too shy to speak about breast health and couldn’t even watch a demonstration of a breast self-examination. In fact, they altogether avoided my booth because they were so reserved.
I think it’s important for us to address these cancer-related stigmas that communities live with today, and question why it’s important for us to get rid of them. For starters, prevention, screening and early stage diagnosis are all defeated because of the avoidance of the subject by women.
Awareness, knowledge of signs and symptoms, healthy lifestyles and self-exams are not upheld due to the feeling of embarrassment and worry of self-image, and, more importantly, family-image perceived by the individual’s respective community. The unfortunate consequence of this is late presentation of advanced breast cancer, and thus a much more difficult clinical pathway and poor prognosis.
Just as described earlier, stigmas have this so-called silencing effect, which at the end of my story only affected my newly diagnosed patient, who was merely seeking help from someone in a similar community. Someone she could have related to, and received advice on resources or coping methods. Needless to say, I found a different route to provide her with support because, ultimately, I had to respect both parties.
Now, because of the lack of education and fear, a lump in the breast may just come across as part of the physiology of the breast, and before you know it this tiny lump, which is actually cancer, ends up spreading to the lymph nodes and other organs.
Hypothetically, even if a patient knew that something was wrong, what empowers her to go to a doctor to get the lump examined? Rather with this silencing effect that we spoke of earlier, she may wonder that if she’s diagnosed with cancer, who can she tell and what will happen to her.
Unfortunately, with this ongoing stigma it negates all efforts to spread awareness and provide support to these patients in rural communities. However, again stigmatisation can happen anywhere, including huge urban communities.
To begin changing this, we need to maintain cultural sensitivity. As healthcare professionals, we can easily speak about breasts including our own, and we don’t realise that the individual, sitting across from us, may have the utmost difficulty talking about their health problems, let alone their breasts. We maintain cultural sensitivity by studying the culture, asking questions and finding out what is and isn’t acceptable. Once we understand how women in that particular community think, it’s important to build a rapport and slowly start educating.
Even though outreach can be done through the internet and media, I think face-to-face conversations would be more effective. More importantly, starting education at a young age is even more fruitful. Using lay navigators, nurses, doctors and volunteers in these communities can help change the perception, and will eventually create awareness. Although it may be initially frowned upon, the effect is increased screening and self-assessments, early detection, and, therefore, lowering mortality rates and creating support groups.
This is the reason for change. This is why change is good. To improve the health of women in our community, it’s vital that we empower those around us to feel comfortable in their bodies, and address anything that concerns them. Like Robin Sharma once said, “Change is hardest in the beginning, messiest in the middle and gorgeous at the end.”
Meet our Expert - Krupa Parekh-Padia
