By: Alejandra Campoverdi
This week, I removed both of my healthy breasts. I never dreamed I would write these words but given my family’s devastating generational battle with breast cancer, it was the right choice for me. Five women in my family have been diagnosed with breast cancer – my bis-abuela, abuela, mamá, and two tías. We all carry the harmful BRCA2 gene mutation, which raises our risk of developing breast cancer to 85 percent. By undergoing a preventive double mastectomy, I will lower my risk to under 3 percent and hopefully spare myself from ever having to hear the words “you have breast cancer.”
I made the decision to have a preventive double mastectomy in 2013 when I first tested positive for BRCA so I’ve had a lot of time to process, do research, and learn as much as I can about my options. One thing that’s been both reassuring and comforting has been following the experiences of women who are going through their own journey as BRCA carriers or breast cancer survivors, but in doing so, I couldn’t help but notice something: the public faces of breast cancer are not diverse. I have been hard pressed to find many Latinas visible on this issue, let alone organizations centering Latinas around breast cancer. Given that breast cancer is the most commonly diagnosed cancer amongst Latinas, this needs to change. Diversifying the voices in women’s health literally can mean the difference between life and death for so many Latinas who need to hear this life-saving information.
When it comes to breast cancer, Latinas are 69% more likely to be diagnosed at an advanced stage than non-Hispanic white women. What contributes to this number is that Latinas are getting less mammograms and are delaying follow-up of abnormal screening results. Why is that? Socioeconomic and cultural factors affect screening behaviors. Latinas suffer from financial barriers (having no health insurance, poverty), structural barriers (poor geographic access, lack of transportation to providers), and personal barriers (language, discrimination). Yet studies show that social support and culturally appropriate outreach can improve screening levels. This is why I launched the Well Woman Coalition.
The Well Woman Coalition is an initiative whose mission is to empower women of color to have agency over their own health and healing through awareness, education and advocacy. When it comes to women of color and women’s health in particular, we must have culturally competent conversations. As a Latina, I understand that there is a need for cultural considerations when addressing the health care needs of diverse and multicultural communities. Someone’s culture can shape how they experience and interact with health care providers. Women’s health screening exams can even feel invasive depending on someone’s health and religious beliefs, and we can also sometimes see an inherent fear and distrust of doctors. My abuelita discovered a lump in her breast and did not go to the doctor for almost a year to have it checked out. She was scared of the doctor and she didn’t have health insurance. If she’d had health insurance and a better experience with doctors, her death from metastatic breast cancer might have been avoided.
And there is still a lack of information about genetic testing in communities of color. These tests, like the BRCA test that I took, are critical to flagging potential hereditary cancers. Genetic tests used to be very expensive and inaccessible but now, thanks to companies like Color, there are affordable options that many times include free genetic counseling as a part of their services. A positive diagnosis does not mean you have to undergo a preventive mastectomy, but whether you choose surgery, preventive therapies or increase your levels of preventive screening, information itself is empowering.
As Latinas, we must remember that we truly are our own best health advocates and to this end, there are three key steps we can take: Arm yourself with information, make empowered choices, and save your own life. As they relate to breast cancer:
- Arm Yourself with Information.
- Set a monthly reminder to perform a self-breast exam. Be religious about your mammograms and pap smears. If you have reason to believe you may be at a higher risk for developing breast cancer, take a genetic test. Learn about the many diet and lifestyle changes that can help lower your risk, regardless of your genetic disposition. I’ve become certified as a Holistic Cancer Specialist and can attest to the many health benefits of matcha tea, increased superfood consumption, limited alcohol intake, healthy sleep habits, and regular exercise.
- Make Empowered Choices.
- Once you have gathered this valuable information, make the choices that are best for you. There is no right or wrong decision – for some its diligent surveillance, for others its preventive therapies, and for some its preventive surgery. The most important thing is to choose a course of action that is well-informed and therefore intentional. Education is empowerment.
- Save Your Own Life.
- I am not naïve about this one. Life happens. We and our loved ones get sick. Health is the great equalizer and we only have so much control over our bodies. But whether dealing with a predisposition, a diagnosis, or a chronic health condition, we are our own best health champions. I’ve spent enough hours sitting in free clinics, chasing HMO doctors, and having my legitimate concerns minimized to know that no one is going to save your life but you. Enroll in healthcare. Be relentless about protecting and maintaining your health, keeping up with yearly women’s health screenings in particular. And this includes mental health, where the incorporation of psychology, spirituality and mindfulness practices can help mitigate the adverse health effects of past emotional traumas and give us the peace we deserve – body, mind, and spirit.
October is Breast Cancer Awareness Month but it is my hope that our community is empowered to direct our own health and healing every month, even in the fate of a difficult diagnosis. These are hard conversations to have but the more open and vulnerable we allow ourselves to be when it comes to our journey, the more we can change the face of breast cancer to be more representative of the population and therefore feel more inclusive of the women it affects. No one should feel like they have to go through this alone. Let’s build a supportive and active comunidad around our breast health together, for each other and for our loved ones.
In an effort to pull back the curtain on the realities of a preventive double mastectomy, as well as to center the experience of Latinas, Alejandra is sharing her surgical journey on Instagram. Follow along at @acampoverdi using the #WellWoman hashtag, and please help spread the word. You never know who may be struggling in silence.