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Meeting Unmet Needs For the Metastatic Breast Cancer Community
November 2, 2016
Common messages of early detection and survivorship do not easily resonate with the daily realities of those living with metastatic breast cancer. An estimated 150,000-250,000 women 1,2,3 in the U.S. are living with metastatic (stage IV) breast cancer, meaning the cancer has spread to other areas of the body outside the breast. With no cure currently available for late-stage breast cancer,4 these patients will remain in treatment for the rest of their lives. The Avon-Pfizer Metastatic Grants Program was founded in 2014 to address unmet needs in this community. In its inaugural year, 23 grants totaling one million dollars were awarded to non-profits around the country to help navigate the unique medical and emotional challenges associated with metastatic cancer.
Here we introduce you to three of the Avon-Pfizer grant recipients, who are doing innovative work to help make an impact in the lives of these patients and their caregivers. This month we announced the next round of grantees for 2016– and we’re delighted to include these organizations for our second year of funding.
A Search Tool to Empower Metastatic Patients
Clinical trials are a necessary step in the research process to bring about new and improved treatments for breast cancer. But despite their importance, only about 3 to 5 percent of breast cancer patients participate in them.5,6
In 2008, Breastcancertrials.org (BCT) was launched to empower people affected by breast cancer to consider clinical trials. Other trial databases had already existed online, but this search tool was created specifically for breast cancer patients, helping them learn about ongoing trials they may be able to participate in and explaining how they work.
Within a few years of launching BCT, the San Francisco non-profit realized that metastatic breast cancer patients could benefit from an even more specialized search tool. Partnering with five different advocacy organizations, and with a grant from the Avon-Pfizer program, they recently launched Metastatic Trial Search. “We recognized the needs of metastatic patients are somewhat different, and we wanted to find a way to reach out to them directly,” said Elly Cohen, Program Director of Breastcancertrials.org.
To start, the metastatic trials search tool is available on the websites of several trusted advocacy organizations so patients can feel comfortable sharing their anonymous health information. The tool is tailored to ask key questions related to stage IV disease, such as where has the cancer spread? Patients whose cancer has only spread to their bones, for example, may be ineligible to participate in certain trials, said Cohen. And for patients whose cancer has spread to their brain, they may not qualify for certain trials because many medications can’t cross the blood-brain barrier.
Another goal of the site is to encourage people with metastatic breast cancer to consider trials earlier in their treatment. Often, patients turn to trials after they’ve exhausted all other options. “It’s important for people to be aware of trials throughout one’s metastatic journey,” said Cohen. “In some cases, earlier treatment may prove to be beneficial. We’re engaging people to talk to their doctors about these options.”
BCT is also working to demystify the trial process for the lay public. Some people believe that if they participate in a clinical trial, they’ll only end up getting a placebo, or sugar pill, and that treatment can be withheld for them. “With cancer clinical trials every patient typically receives at least the standard of care already approved by the FDA,” said Cohen.
By participating in clinical trials, patients can access treatments that may not be widely available to the public for years. They’re also playing an important role in the advancement of medicine – helping develop therapies that may someday benefit other individuals with breast cancer.
In a recent focus group with metastatic patients, many said they were using the trial search tool to help them understand their future options, even if they didn’t need a new treatment at that time. If and when their disease progressed, they wanted to be ready to talk to their doctors. “If I put myself in the shoes of metastatic breast cancer patients, it makes perfect sense,” said Cohen. “They want to feel prepared, and be ready for whatever next steps they can take.”
A Sisterhood of Women With Breast Cancer
In Southern California’s Imperial Valley, which sits on the U.S.-Mexico border, breast cancer patients have unique challenges. Many are Latina immigrants, working in agricultural jobs, who travel back and forth regularly across the border, and often receive their healthcare on both sides of the border. For more than a decade, the Cancer Resource Center of the Desert (CRCD) has been helping cancer patients in this community navigate the healthcare system and supporting them throughout the cancer treatment journey.
With the support of an Avon-Pfizer grant, last year the CRCD launched a program geared specifically for patients with metastatic breast cancer and their caregivers. Social Workers assigned to each metastatic patient check in with them bi-weekly, often visiting their homes.
Another important aspect of the program is a bi-weekly support group they created for metastatic breast cancer patients. In Spanish, the word comadre ¬–close female friend ¬– captures the intimacy created in this group. Conducted in Spanish, the patients share and discuss unique issues relevant to living with metastatic breast cancer. “Many of our clients are wrestling with end-of- life issues and talking to their children about their cancer,” said Diana Peacher, CEO of the CRCD.
In fact, the intimate bonds formed in the support group have been integral to the program’s success, said Peacher. “These women have kept in contact with each other, visiting each other and as some of them passed away, they were by each others’ sides at their funerals.”
The program also supports patients’ caregivers and their families, helping them access resources, such as home health services and hospice care, and to begin the conversation around end- of- life care. Due to cultural reasons, many Hispanic patients feel reluctant to talk about cancer and death with their loved ones, said Peacher, but with the program these important conversations are started. “The families don’t have to scramble and feel unprepared. To know things are in place reduces some stress for the patients and their families,” she said.
Food as Medicine and Love
Since 1985, God’s Love We Deliver has been preparing and delivering thousands of free meals each day for people in the New York Metropolitan area with terminal illnesses. Last January, with the help of an Avon-Pfizer grant, the non-profit launched a meal program geared toward patients with metastatic breast cancer.
Receiving a diagnosis of metastatic breast cancer can be overwhelming. Patients often have to begin treatment immediately, which can leave them physically weakened, without an appetite, and unable to go shopping for groceries or to stand in the kitchen and cook. With the metastatic meal program, patients work closely with a nutritionist to tailor a meal program to fit their dietary needs, especially when they experience treatment side effects such as nausea and loss of appetite.
Under the program, metastatic patients receive three meals a day prepared and delivered by a God’s Love volunteer. Children and senior caregivers of metastatic patients also can receive meals. “Metastatic breast cancer is a sudden and devastating diagnosis,” said Dorella Walters, Senior Director of Program Services. “We thought, ‘how can we alleviate a major stress in their life?’ And if they have children, providing cooked meals can help maintain some semblance of normalcy for their loves one.”
Since the pilot meal program launched last winter, they’ve served 51 women with metastatic breast cancer and about a dozen dependents and caregivers in the New York City area. As these women navigate the complex treatment process, organizers at God’s Love have noticed how a home-cooked meal can make a big difference. “We’re hearing from service providers, how these meals are helping patients remain in care,” said Steffani Maxwell, Manager of Corporate & Foundation Relations. “By reducing stress it helps them better manage their medical care. It’s one less worry for them.”
1Mayer M, Grober S. Silent voices: women with advanced (metastatic) breast cancer share their needs and preferences for information, support and practical services. Living Beyond Breast Cancer. 2006.
2Jung SY, Rosenzweig M. Sequential Metastatic Breast Cancer Chemotherapy: Should the Median be the Message? Frontiers in Public Health. 2013;1:49. doi:10.3389/ fpubh.2013.00049.
3Ganz, Patricia. Improving Outcomes for Breast Cancer Survivors: Perspectives on Research Challenges and Opportunities. Breast Cancer Research Foundation. 2015; 10.1007/978-3-319-16366-