This month marks the one year anniversary of my mother completing her breast cancer treatment (stage 1). This anniversary is even more meaningful because we get to celebrate it along with Breast Cancer Awareness month and Diwali, which marks light’s triumph over dark and evil. I couldn’t be more proud of her for how she has endured and conquered this illness over the last year. She has always been the strongest woman I have known, while there is still a long journey ahead, I know she will continue to do great.
As I reflected on what this milestone means for my mother and my family, I’m reminded that her life is never going to be the same, no matter how much we try to move forward. The visible surgical scars have faded, but she will be on a medication and monitoring protocol for the rest of her life. And, the reality is that there will always be the shadows of her experience following her–the feeling of betrayal by her own breast, the physical changes resulting from her treatment, and of course, the uncertainity and fear of what her future holds and the risk of recurrence. For the many ways she was fortunate in her early diagnosis, prognosis and treatment; breast cancer at an stage holds some stark, life-changing realities that no person can ignore.
Rather than discuss fundraising or general awareness — all of which are incredibly important and I would still encourage — I’m writing this note today to talk about personal awareness and advocacy.
[Read Related: How a Breast Cancer Diagnosis Lead Me to Advocate for Myself]
Feel Yourself Up
My mom felt a lump in her left breast on a Saturday afternoon in late June. Within 7 days, she had a mammogram, and 6 days after that she had a biopsy. All told, not even a month after finding her lump did she have a diagnosis, and shortly after that, a treatment plan. All of this started with her self-check and a lot of quick action, and I can’t stress this enough.
While the instructions of a self-check for a “marble-like lump” may seem obvious, there are many other ways our body may tell us something is wrong. In addition to a lump that persists throughout your period, some important watch outs can also include:
- An uneven [ie not a typical marble shape] mass or lump, which may feel as small as a pea
- A change in the size, shape, or contour of the breast
- A blood-stained or clear fluid discharge from the nipple
- A change in the look or feel of the skin on the breast or nipple (dimpled, puckered, scaly, or inflamed)
- Redness of the skin on the breast or nipple
- A marble-like hardened area under the skin
Because our bodies and our breasts will continuously change as we age, it’s critical to start out by getting to know what is “normal” now and track how your body evolves, so you can then look out for the abnormal. Understanding your family history and other contraindications is also important – many don’t realize that it needn’t be a first-degree connection to breast cancer to prompt a genetic screen, and it is a powerful tool that can help you understand your own risk. Lastly, mammograms aren’t pleasant, but are necessary, since not all breast cancers have surface-level indications. Depending on your lifestyle, family and personal health history, and exposure to risk factors, I would encourage you to pose specific questions to your doctor on what the right time for you is, rather than relying on general recommendations.
You Are Your Best Advocate
I’m not suggesting trying to get a medical degree from WhatsApp University or falling down a WebMD rabbit hole, but the reality is that you are the best person to advocate for yourself when you need medical help, and educating yourself is incredibly powerful — it’s been reported that 36 percent of US adults have low health literacy, and that can easily translate into ignored signals and risks. If you’ve gotten to a point where you know what “normal” is for you and you feel something weird, please don’t hesitate to pursue and push the matter for your benefit.
Women in the United States have long lagged behind their counterparts in other high-income countries in terms of access to health care and health status. In fact, U.S. women report the least positive experiences – from the greatest burden of chronic illness, highest rates of skipping needed health care because of cost, difficulty affording treatment [yes there’s a pink tax in our health care too], and low satisfaction with their care. And the idea of satisfaction is incredibly underrated. My mother had different chronic ailments ranging in severity and was often very frustrated by the lack of attention and responsiveness that she had from her Primary Care Physician (PCP) at the time. From the moment of her diagnosis in July, however, finding the right practitioners and specialists was just as urgent a priority as starting treatment itself. It served as a reminder that we can, in essence, interview our health care professionals to ensure that they understand our unique physical, mental, and emotional health needs. We can also “cut” those that aren’t cutting it.
It may take a few lemons on the way, but I’ve learned that setting up the right medical support system for oneself well before a medical emergency is incredibly important to making sure that you get the support that you need when you need it. Take advantage of recommendations and referrals, and if you can help it, don’t settle for anything less than the best for yourself.
[Read Related: How a Breast Cancer Scare at 25 Changed My Life for the Better]
Do It For the Culture
A few months back, I read a study that found that Indian and Pakistani women in the United States are diagnosed with breast cancer, including more aggressive forms of the disease, at a younger age (study). In digging further, I was struck by the general lack of data about how breast cancer affects South Asian and Asian women. Prior cancer research that has been done has shown that fewer Indian and Pakistani women participate in scientific studies and, and that several socio-cultural factors may delay their seeking health care.
Research has shown poor mammogram screening rates in Indian and Pakistani women, and this is largely linked to a lack of family support, lack of transportation, modesty, fear, beliefs that cancer is divine punishment for past deeds, having lived in the United States for less than 10 years, low English proficiency [see HERE for translated resources], and a lack of faith in the health system & western/allopathic practices.
While I hope that none of the above roadblocks apply directly to you, I wouldn’t be surprised if it did remind you of someone in your life, especially older relatives. In our case, for how diligent my own mother was in her self-check, she was less so in maintaining her regular mammogram schedule. And, now we know what can happen.
The point here is two-fold. First: There is an opportunity for better research and analysis of how breast cancer affects the South Asian community, which could very well inform solutions and our understanding of cancer in minority communities [read: Less than 3 percent of bone marrow donors are South Asian] in the long run. Thus, our active participation in the clinical process through our own health management will feed the data pool to eventually serve demographically bespoke solutions. And, secondly, there is likely a woman in your community who for on reason or another is not taking critical preventative measures. The more we can destigmatize the illness and treatment, and speak the truth to this issue; then, the more lives could be saved.
I hope that you’ll receive this letter with the loving intention in which it was written. Every lesson discussed above, I’ve employed for myself, because for lack of a better way of putting it – this shit hit home. While the data maintains that every woman is at risk (12.5 percent on average) of developing some form of breast cancer in her lifetime, I believe that these are small things that we can do to honor those before us as well as protect ourselves.
With nothing but love for you and your girls,
Nandini
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