By: Dr. Kavita Jackson
When I was diagnosed with breast cancer in March of this year, part of my shock and disbelief stemmed from not ever having seen or having known anyone with breast cancer that looked like me. Through my medical training, I have seen women (and men) of all ages and color with a breast cancer diagnosis, but never an Indian person. It’s also not something that I had ever heard even being discussed in my Indian community. I didn’t realize it was a thing. Somehow, this must have contributed to my unconscious thought that Indian people don’t get breast cancer, which is exactly what I said out loud when I was diagnosed.
Obviously I was wrong. I don’t like thinking it was from a place of ignorance because of the negative connotations associated with that term and any additional negativity from myself in the early months of my diagnosis and treatment would not have served me well. Rather, it was just from not knowing, confounded by the Indian cultural stigma surrounding illness and diagnoses like breast cancer. If I felt like this as a physician and now a breast cancer survivor, imagine how many Indian people around the world are as uninformed (maybe not and it’s just me!). Imagine how other Indian women with breast cancer, like me, are feeling – lonely, scared, confused, betrayed. So, I started to dig for insight.
We know that worldwide breast cancer is the most common cancer diagnosed in women and the most common cause of cancer death in women (1,2). This is true in India as well, however, only recently since cervical cancer was the most common cancer and the most common cause of death from cancer prior to 2012 (3,4). In the last several decades the incidence of breast cancer in India has increased by more than 6 times! In 2018, there were 162,468 new cases of breast cancer in India, of which about HALF (87,090 to be exact) died (3).
Interestingly, breast cancer appears to be more common in the younger age groups in India, with a large number of women being diagnosed under the age of 30 years (5). This felt alarming to me since I was diagnosed just over 30 years of age. My oncologist actually has a theory about this based on her experience of having seen a notable number of young Indian women with breast cancer. She noticed that these patients had male predominant predecessors (brothers, uncles, etc) and suspects there may be an undiscovered genetic mutation being passed down in these families that is silent in men but increases the risk of breast cancer in the females. This is all speculation and there is no evidence to support this theory but I thought it was a fascinating idea.
Furthermore, a recent study by Thakur, Bordoloi, & Kunnumakarra, looking at worldwide data on triple negative breast cancer aka TNBC (the specific type of breast cancer I had), found that India has the highest reported rates of TNBC (6). Compared to the mean of 15% (15% of breast cancers are of the TNBC type), in India TNBC accounted for almost double the percentage of breast cancer diagnoses. Similar findings have been cited in other studies, too (7,8).
In India, for every 2 women diagnosed with breast cancer, 1 will die (9). Contrast this to the US, where for every 5-6 people diagnosed with breast cancer, 1 will die (10). Wow, right? Maybe not shocking to those who think this an expected difference between a more developed versus a less developed country and you’re right, but this face doesn’t make it less heart wrenching to me. Specifically, the disparity seems to stem from poor awareness of breast health leading to women presenting with later stage disease at diagnosis as well as a lack of adequate diagnosis and treatment facilities (11, 12, 13, 14). Add stigma and misconceptions about the disease and a privatized health system which is not utilized by most marginalized communities who seek care from alternative providers and you can start to grasp the complexity of this issue. Unfortunately, all of these factors contribute to women being diagnosed with breast cancer in later stages which we know is associated with higher mortality (12). For example, people diagnosed with breast cancer confined to the breast (localized) have a 99% 5 year survival rate compared to a 27% 5 year survival rate in those that are diagnosed when breast cancer has spread (distant disease) (13). This highlights the benefit and necessity of earlier diagnosis of breast cancer, a message that has been loud and clear in the US for decades but still needs to grow more widespread in India (many organizations working on this!).
Having taken in all of this information, I realized that I am not an outlier, an exception, or alone, rather, I am representative of a truth. Indian women are more affected by breast cancer than I had known. Tackling the paucity in breast cancer screening programs and diagnosis and treatment centers in India seems like a daunting task especially, for one person. I know there are very smart and capable public health organizations actively working on this venture. However, given that breast cancer awareness is lacking in India I can make a greater impact as an individual through simple teaching. Thanks to virtual platforms I can easily teach breast cancer basics and the breast exam to women all over India and through education empower them. So I look forward to continuing to spread awareness in this manner (as I will be with another group in India this week).