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.
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!”
“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!”