At two cancer hospitals in Mexico, Dr. Cynthia Villarreal and her team have been hard at work collecting data from the many young women with breast cancer they see every week. Women with breast cancer in Mexico are diagnosed, on average, one decade younger than North American and European women, and Mexico has a large proportion of breast cancer patients who are under the age of 40. This trend exists in many other low- and middle-income countries (LMICs), as well.
Despite this high burden of breast cancer among younger women in LMICs, their specific needs — clinically, psychologically, emotionally, and logistically — are not studied or addressed in a systematic way. That’s why Dr. Villarreal and her team have been working with GCI to collect data from their patients: We want to understand the unique characteristics of young women with breast cancer and design tailored interventions to address the obstacles they face.
The Young Women’s Breast Cancer Database was rolled out as part of Dr. Villarreal’s program in Mexico for young women with breast cancer called “Joven y Fuerte”, or “Young and Strong”. The initial results of the database were presented at the San Antonio Breast Cancer Symposium in December 2016. Here are some of the most interesting pieces of data from this initial analysis, and why they’re important:
- 25% of the women are childless: This statistic is important for two reasons. First, it shows that 25% of these young women may still want to start a family, a goal that can be jeopardized by the physical effects of harsh cancer treatments. Second, it tells us that 75% of these women already have young families who will be greatly affected by this life-threatening disease. This highlights the need for conversations and resources regarding fertility preservation, as well as the importance of tailored psychosocial support for these women and their families.
- 52% did not have higher education: Breast cancer is a complex disease that is difficult to understand, even for the most well-educated people. Patients lacking any sort of higher education may have additional obstacles in understanding their disease and have fewer resources for overcoming those obstacles. It highlights the potential need for tailored health education interventions and additional resources, such as support groups.
- 90% came to the doctor with a self-detected mass: Many women in the U.S. find out about their breast cancer through a mammogram, before they or their doctor can even feel it. Typically, by the time a woman can feel a lump herself, her cancer has grown into a much more serious disease. The fact that nearly all of these women could feel a mass themselves is a startling statistic, and it calls for efforts to increase awareness about breast cancer in the general public and among primary care providers, as well as efforts to improve times to diagnosis for these patients, so they can be treated as soon as possible.
- 53% were diagnosed with Stage III or IV disease: In the U.S., 60% of women are diagnosed at an early stage of disease, when breast cancer is much easier to treat and patients have the highest likelihood of long-term survival. However, we see here that more than half of these young women in Mexico are diagnosed at later stages of disease, which again calls for efforts to improve awareness and reduce health system delays, so these women are able to recognize and get help for their disease as quickly as possible.
In addition to clinical data, we are also collecting information about quality of life, family history of breast cancer, sexual function, and psychosocial characteristics of these women to get a full picture of their disease and its context. We plan to expand the database to Brazil, Panama, and Peru in 2017, and the findings will inform culturally tailored interventions to address the unique needs of these women and help improve breast cancer care in Latin America and beyond.
Latin America is home to 60 million indigenous people. There are over 400 different indigenous groups across the region, which together represent approximately 10% of the total population of Latin America. Despite the fact that they make up a large proportion of the region’s population, indigenous peoples are marginalized, mostly poor, and largely underserved. They experience immense health disparities, and in our Lancet Oncology commission on cancer control in Latin America, we specifically discuss cancer risks, care, and outcomes in this vulnerable population.
Although there is no universal definition for indigeneity, there is a general consensus in Latin America that “indigenous” applies to descendants of the people who lived on the continent prior to European arrival. Though indigenous groups are culturally diverse, they share many common experiences – such as colonization, forced migration, marginalization, and suppression of their languages and cultures – that have resulted in similar poor socioeconomic conditions and health inequalities today.
Despite the fact that indigenous people make up 10% of the Latin American population, there is limited epidemiological data on their health conditions and outcomes, especially when it comes to cancer. In fact, there are no national cancer registries that account for ethnicity and indigeneity in the region. However, some smaller studies have shown that indigenous populations in Latin America – like those in Australia, New Zealand, Canada, and the U.S. – have more adverse cancer presentations and outcomes than their non-indigenous counterparts.
Research has shown that indigenous people are at greater risk for certain cancers and toxic exposures, including:
- Cervical cancer: There is a higher burden of cervical cancer among indigenous and rural women. This is most likely due to limited access to HPV vaccination, Pap testing, and early treatment, all of which prevent advanced cervical cancer.
- Hepatocellular carcinoma: Indigenous people have higher rates of hepatocellular carcinoma, which can be attributed to the high prevalence of viral hepatitis, alcohol use, and carcinogenic environmental exposures.
- Gastric cancer: Risk factors for gastric cancer among indigenous people include tobacco and alcohol use, higher intake of harmful food preservatives due to lack of refrigeration, and untreated H. pylori infection.
- Indoor smoke exposure: Many indigenous populations suffer from overexposure to harmful smoke pollution because they use biomass fuel for heating and cooking. Many combustion byproducts are carcinogenic.
- Environmental carcinogens: Indigenous people often live on environmentally contaminated or degraded land and are exposed to toxins such as mercury, DDT, arsenic, and petroleum.
Barriers to Care
Indigenous populations have relatively poor health outcomes, due not only to their greater risk for certain diseases, but also the many barriers they face when trying to access health care. They often reside in remote or rural communities without access to health clinics or proper cancer screening. When health services are available, they are often of poor quality and patients must undergo long waiting times for screening, follow-up care, and treatment.
Even when an indigenous patient is able to access a health care facility, cultural differences can adversely affect the patient’s interactions with modern health services. Many times, doctors are unaware of or insensitive to cultural differences, or they do not have the time to give proper explanations of the disease or next steps in care. Negative experiences can not only affect the management of the patient’s current disease, but can negatively affect health-seeking behavior in the future.
Lack of Research
We actually know very little about health and cancer among indigenous populations. Only 10% of medical publications from the Latin American region address indigenous health. An even smaller percentage of this research pertains specifically to cancer among indigenous peoples, despite the fact that they bear a disproportionately large burden of disease. We need well-coordinated research efforts to better understand risk factors, lifestyle factors, social determinants of health, environmental exposures, health-seeking behaviors, and access to oncologic services for indigenous people in Latin America. It is not until we have a comprehensive view of the problem that we can design sustainable interventions to improve outcomes.
There are some potential solutions we suggest to begin addressing the burden of cancer among indigenous populations:
- Cancer registries: What first need to establish cancer registries that specifically include ethnic data at the national, regional, and institutional levels in Latin America. This step is necessary to collect important data on indigenous health and cancer outcomes.
- Cancer prevention programs: Many of the cancers that disproportionately affect indigenous populations are preventable. We therefore recommend the expansion of cancer prevention programs, such as public education campaigns, the formation of advocacy groups, expanded HPV and viral hepatitis vaccination, cervical cancer screening, and public programs to control smoking and harmful environmental exposures.
- Provider education: To improve provider and patient relationships, we suggest providing education to health care providers on cultural sensitivity and health needs specific to indigenous populations. Additionally, hospitals in areas that service indigenous people could provide interpreting services and increase training of female health workers, since studies have shown that indigenous women strongly prefer female providers.
With more robust epidemiological data and a deeper understanding of the cancer burden among indigenous peoples, we can then work to reduce health disparities and improve outcomes of this vulnerable and underserved patient population.
Our Patient Navigation Program in Mexico was only launched a few months ago, but we are already seeing what an amazing service it provides for so many patients. Here, Dr. Enrique Soto tells the story of Juana in Mexico City. With the help of patient navigation, Juana has successfully navigated Mexico City’s health system and is now excited about the prospect of helping other patients like her complete chemotherapy!
“Juana is one of the many success stories of our Patient Navigation Program,” says Dr. Enrique Soto, co-investigator for the Patient Navigation Program in Mexico City. “Juana is a delightful 77-year-old woman who lives in a village in the borough of Xochimilco, in the southern part of Mexico City. She was diagnosed with breast cancer in her community and sent to Ajusco Medio General Hospital. After Juana arrived to Ajusco Medio, she underwent a mastectomy with axillary lymph node dissection.”
Ajusco Medio is the community hospital where Wendy, Mexico’s first navigator, works to navigate cancer patients to the proper cancer centers throughout the city for follow-up treatment and care. She not only helps schedule follow-up appointments and provides information on health insurance, but she also offers support and friendly face for patients who are trying to receive care within a complex and confusing health system.
“In one of her follow-up visits, Juana was approached by Wendy, our patient navigator, who offered to help her receive adjuvant treatment with chemotherapy and radiotherapy. Juana started patient navigation and was navigated to the National Institute of Medical Science and Nutrition. There, she was seen by an oncologist within the first two weeks and enrolled in the Seguro Popular public health insurance system,” Dr. Soto explains.
To be seen by an oncologist at a tertiary cancer center within two weeks of referral is an impressive feat in Mexico City, where the median time to arrive to a tertiary care center after being referred is two full months. With Wendy’s help, Juana was able to make this journey in a fraction of the time.
“Her biopsies were reviewed and after a complete evaluation by oncologists, surgeons, radiation oncologists, and geriatricians, she was deemed fit for treatment. So far, Juana has had three chemotherapy sessions without any complications, and is getting ready for her radiotherapy,” Dr. Soto says. “She has even participated in another one of our trials exploring the use of smartphones for the follow-up of older adults undergoing chemotherapy, and she enjoys the prospect of helping other patients through her participation in research.”
Dr. Soto explains that Juana is a wonderful and energetic patient who is the perfect example of how navigation can help cancer patients move through a complex system to receive timely cancer care – with amazing results! Not only has Juana successfully started her cancer treatment, but she is now enrolled in public health insurance and is an active participant in other studies that aim to help patients just like her complete chemotherapy.
“Juana is very grateful for the help Wendy gave her and is happy with the whole navigation team,” says Dr. Soto. “But we are even more grateful for her amazing participation!”