You might have been part of a breast cancer (BC) marathon or heard about the latest awareness campaign promoting BC screenings. Maybe you have donated money to the cause, are a family member of a survivor, or a survivor yourself. Yet there is a high chance that there are a group of men and women living with the disease that you are not aware of - they are the ‘forgotten’ patients of metastatic breast cancer (mBC). They are a group of brave individuals who often live with feelings of isolation due to their metastatic diagnosis.
Metastatic breast cancer (mBC), stage IV breast cancer that spreads outside the breast area, is the most common cause of death for patients with BC- a serious issue. mBC is breast cancer that has spread (metastised) beyond the breasts to other organs in the body including the lungs, bones, brain or liver. It is also the most advanced stage of breast cancer, making it the most critical.
According to the World Health Organisation (WHO), there are about 600 new cases of breast cancer diagnosed every year in UAE. About 15 per cent of these cases (90 cases every year) are metastatic at first presentation. Around 30 per cent of women diagnosed and treated at early stages may experience disease recurrence in the following couple of years and become metastatic breast cancer patients.
The MENA region has a higher number of advanced stage breast cancer cases than developed countries. For instance, 62 per cent of breast cancer cases in Saudi Arabia are diagnosed as stage III and IV, while only 6 to 8 per cent of such cases are reported in Europe or North America.
Greater awareness on breast cancer for early detection has definitely led to more women diagnosed at early stages. However, about 15 per cent of the patients are still diagnosed at advanced stages and disease recurrence remains inevitable.
Despite this, there still exists multiple misconceptions around mBC considering the lack of conversation around it compared to the attention, advocacy and policy focus on the early stages of breast cancer.
The lack of awareness around mBC has left many patients feeling isolated and marginalized. Additionally, the diagnosis of mBC has a huge psychological and emotional impact on women and their families. Many surveys, such as the Canadian Breast Cancer Networks, reflected that many patients start to experience anxiety, isolation and depression due to their diagnosis. This is in addition to the high levels of fear associated with the uncertainty of the future.
In fact, one of the biggest fears that women with mBC have is the impact that this disease will have on their family members. Most women with mBC are over 50 and are caregivers for children and/or other family members.
However, despite the huge toll that mBC brings, it does not mean women with mBC have a negative outlook on life. Rather, it is found that many patients of mBC will do everything in their power to maintain control and live a full and long life as possible.
More resources for psychological counselling and support, including awareness on existing support services are needed. Additionally better patient-doctor communication is also required to aid women in gaining a sense of higher control over their condition.
One of the most significant challenges ahead in addressing the needs of women and men with mBC is the need to create greater public awareness. It is essential that people know mBC as the most advanced stage of breast cancer, and as different from the earlier stages of BC. Heightened awareness will generate and encourage conversation along with support on how to live with mBC on a day to day basis.
Culturally sensitive information is also important in helping women feel a greater sense of control and strength. In fact, more information regarding current and future treatments and research on mBC should be readily available.
There is a need for greater knowledge about the benefits and risks of treatments, along with higher investment on research on mBC are vital. According to an international study only 5 per cent of publically funded research in the United States goes towards mBC.
What is essential is that we fully support and address the needs of women and men with mBC by carrying on conversations and encouraging awareness around mBC.