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.
Earlier this month, we launched our newest Patient Navigation Program in Montevideo, Uruguay. At Jardines del Hipodromo, a community health center in Uruguay’s capital city, two patient navigators are helping women with abnormal Pap tests receive the follow-up care they need.
Pap tests are an important step in the early detection of cervical abnormalities and critical for the prevention of cervical cancer. Cervical cancer is one of the most common cancers affecting women in Uruguay and other low- and middle-income countries, and despite a comprehensive national prevention plan, the disease continues to impact the most vulnerable women in Uruguayan society – women in the public sector, young and single mothers, and those with lower educational levels and socioeconomic status.
In order to detect and prevent the progression of cervical cancer, Pap tests are recommended for every women between 21 and 69 years of age. However, the proportion of women who receive a Pap test in Uruguay is low, and among those who do receive a Pap test, few know the results of their test or move on to receive the recommended follow-up care. The important thing to know about cervical cancer is that it is preventable – through screening, early detection, and timely follow-up, no woman should have to suffer from it. Yet women in Uruguay and other low- and middle-income countries are still presenting with cervical cancer at advanced stages and, as a result, are dying from a preventable disease.
Patient navigation is one important and cost-effective way to enhance access to health care for underserved and vulnerable patients who suffer from – or are at great risk from suffering from – cancer. Patient navigators are specialized health care workers that operate at the intersection of social work, community outreach, and patient support, and they are important liaisons between patients and their health care teams. In Uruguay, our patient navigators are there to help women understand their Pap test results, know what they should do next, access existing health resources, and overcome barriers to receive the follow-up care they need. In this way, navigators are supporting women as they “navigate” the health system to access life-saving screening and treatment, thereby improving patient outcomes and cancer mortality.
Here are five important ways in which patient navigators are helping women in Uruguay:
1. Delivering test results: In a fragmented health system, sometimes just knowing your test results can be half of the battle for women receiving recommended Pap tests at their local health center. In Uruguay, there is a very important national plan to prevent cervical cancer, and the national program reads Pap tests from around the country to determine whether they are normal or not. Unfortunately, those results are not delivered back to the health center where the Pap test was performed. Even though women are supposed to receive a call from the national program with their results, the health center has no way of knowing which patients need follow-up care or if the women in their clinic are even receiving these calls. As part of the new Patient Navigation Program, navigators will personally call every women in the health center with an abnormal Pap result in the past two years to deliver the results.
2. Coordinating next steps: So your results have come back abnormal…now what? Once a woman learns of her Pap result from the navigator, the navigator will tell her what the recommended follow-up care is. The woman might need to come back for a repeat Pap, she may need a different test, or sometimes she will have to go to a specialty health care center for follow-up. The navigator will know this information and know how to help the woman get to where she needs to be – either by scheduling the follow-up appointment, informing her about clinic hours and days of services, or connecting her with a gynecologist to learn more about her options.
3. Overcoming barriers to care: Oftentimes, it isn’t enough to simply have a follow-up appointment scheduled. Patients are often faced with barriers that prevent them from showing up to their appointment or continuing to attend important follow-up appointments in the future. Work, family obligations, and childcare are some of the most common barriers that patients – especially women – face when trying to find time to go to the doctor. Other barriers may include lack of proper health insurance paperwork, difficulty reading or writing, language barriers, or lack of transportation to the clinic. The navigator is equipped to help with each of these issues – either by helping directly with the filing of paperwork for health insurance or patient registration, or connecting the patient to community resources for help with childcare or transportation. Sometimes something as simple as being able to purchase a discounted bus pass can help a women attend a lifesaving follow-up appointment.
4. Educating and empowering: In addition to all of the “logistical” barriers a patient could face, there are educational and psychological barriers that keep patients from attending appointments and making the most of their time with their doctor. Navigators also work to help patients understand what an abnormal Pap test means, as well as the importance of Pap tests, follow-up appointments, and both initiating and completing medical treatment. In this way, navigators can help empower patients to take an active role in seeking out healthcare, so women can continue positive health-seeking behaviors in this and other aspects of their health. By educating women about the importance of taking control of your health, the navigator can have a “ripple effect” in the community that isn’t limited just to the prevention of cervical cancer, but extends to other aspects of personal and family health.
5. Providing emotional support: Finally, a navigator provides emotional support throughout a woman’s journey to seek out her follow-up care. The anxiety that comes with an abnormal test result can be a barrier in and of itself, and many women feel shame or fear, which prevents them from addressing the issue early. They also worry about the impact on their families and jobs, and a navigator is there to connect women to support groups or simply provide emotional support by listening to and empathizing with them. Having an advocate dissipates some of the anxiety associated with coming to the health center to see a doctor, perform another test, or start treatment for a disease, and as a woman is shuttled around from doctor to doctor within a fragmented health system, a navigator can be a friendly face or an extra lifeline in a time of need.
In these ways, patient navigators facilitate access to timely and quality care and help create a more positive healthcare experience, which lead to better health outcomes and greater patient empowerment. Our patient navigators are working to change the way follow-up care is provided to women in Montevideo, and their work will undoubtedly have a positive impact on the health center, the community, and the health system.
“I was 36 years old when I first felt the lump in my breast,” Diana remembers. “I had been married for three years, and we had been trying to have a baby for two of those years.”
Breast cancer in very young women is considered a rare disease. When you look at the global population of breast cancer patients, those who are under 40 years of age represent a pretty small proportion. But when you zoom in on specific regions of the world, the picture changes a bit: breast cancer in young women is much more common in low- and middle-income countries (LMICs), compared to developed countries.
“We tried unsuccessfully to have a baby for two years, so we were about to visit a fertility specialist when I felt the lump.” Diana was eventually diagnosed with Stage III breast cancer and her doctor recommended chemotherapy and radiation therapy. “I was devastated because I thought that the chemotherapy would prevent me from ever becoming pregnant.”
Reproductive and sexual health are just some of the many facets of a young woman’s life that are affected by a diagnosis of breast cancer. She may have young children to care for, parents to support, and a full-time job to pay the bills. Although a breast cancer diagnosis is devastating for any individual, the costs to family and society are greater when such a young patient is affected.
However, despite the higher burden of this disease in LMICs, the needs and concerns of these young women – and even the unique characteristics of their disease – are not well known or addressed.
That’s why Dr. Cynthia Villarreal decided to start a Young Women’s Breast Cancer Database to collect important information – everything from quality of life and psychosocial factors to fertility and clinical characteristics – from this unique and understudied patient population. This way, we can begin to understand how to better help and empower young women with breast cancer throughout their treatment, recovery, and life afterwards.
The database is comprised of several different questionnaires that young women can fill out on tablets while they’re in the waiting room before an appointment. Cynthia implemented these questionnaires as part of a program she initiated at her hospital, which connects these young women to the resources they need to understand fertility-preserving options, learn about important genetic testing, and access community services and support groups.
“I thought that after chemotherapy, I could never become pregnant in my life, and I was devastated,” Diana explains. “However, when I visited my oncologist, she explained that there were several options we could try to become pregnant in the future. She referred me to a fertility specialist.”
Cynthia’s project is starting in Mexico, but she is working with us here at GCI to make the breast cancer database go global. With more women participating in this effort, we can collect more data and understand even more about how breast cancer affects young women around the world. Are there aspects of the disease that are common to all young women? Are there regional or ethnic trends in how the disease presents itself? What risk factors predispose certain young women to breast cancer? What are the most important resources to provide to young women with breast cancer?
All of these questions and more will help to clarify this complex and devastating disease, and will allow oncologists like Cynthia to better serve and support their patients. By expanding the global reach of the Young Women’s Breast Cancer Database, we are expanding the amount of knowledge we have at our fingertips and our ability to understand the plight of young women with breast cancer about the world. This way, GCI can help patients like Diana access important resources that will improve not only their breast cancer outcomes, but their quality of life.
“I am so grateful that my oncologist and her team were concerned about my fertility, understood my concerns, and were able to refer me and my husband to someone who could help. Thanks to this, I am optimistically fighting my cancer and excited about my future possibilities of pregnancy!”