So what exactly does that publication say, and why should I care?
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.
On June 5, 2016, Dr. Goss gave a plenary lecture at the ASCO Annual Meeting on a groundbreaking clinical trial he has been leading for some time. The trial found that extending the use of aromatase inhibitors for breast cancer therapy can reduce the risk of breast cancer recurrence and decrease the chance of a new cancer forming in the other, healthy breast.
The ASCO selection committee chooses its plenary lectures based on their direct clinical application. From a review of 5,400 abstracts they select four most likely to change clinical practice. The trial under Dr. Goss’ leadership, called MA.17R, was selected as the number one trial for presentation at the world meeting, and the results were published in the prestigious New England Journal of Medicine.
In recent years, Dr. Goss has shifted his research priorities from discovering new breast cancer clinical therapies in the developed world to helping underserved patients in low- and middle-income countries (LMICs) across the globe.
Dr. Goss emphasizes that, unlike many cancer therapies, aromatase inhibitors are widely accessible – most are off-patent and, therefore, relatively inexpensive. “New targeted therapies, immunotherapies, and advanced genetic testing are scientifically exciting, but prohibitively expensive for most of the world’s population. Most money for cancer control is spent in high-income countries. Since 86% of funds spent on cancer control globally are spent on only 6% of the world’s population, people in LMICs do not benefit from these scientific advances. Patients from these populations would benefit more from enhanced access to simple, ‘bread-and-butter’ medicine,” Dr. Goss says.
Several years ago, after the global success of his original MA.17 trial, Dr. Goss traveled extensively around the world presenting results from the trial. Somewhat to his surprise, young doctors in LMICs approached him by the dozen asking to train with him, publish with him, and learn from him. They wanted to improve the state of clinical care and research in their countries, but they were always met with resistance by shortage of funds or lack of opportunity.
Dr. Goss realized that the true solution to global cancer control is not necessarily to cure cancer – which is undoubtedly important – but to help patients from underserved populations to access resources that have existed for many decades in the developed world. His chief mission is to improve the survival and quality of life of underserved cancer patients worldwide and thus he has founded the Global Cancer Institute.
So although the presentation of the MA.17R trial was a departure from his current daily focus, Dr. Goss recognizes that all patients with breast cancer – regardless of socioeconomic background – stand a chance to benefit from the results of his latest scientific research.