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.
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.
“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!”