“Sometimes I come home after a long day at work, and I am exhausted from my treatment. I do not have the energy to buy groceries, much less make a meal. It is on these nights that a box of crackers is my only option.” A woman living with metastatic breast cancer shared her experiences with more than 70 program leaders and patients who attended the Avon-Pfizer Metastatic Breast Cancer (MBC) Grants Program Retreat held March 23-24 in New York City. At this meeting, participants discussed the very real issues that impact the quality of life of this patient population. Panel sessions and breakout groups gave attendees the opportunity to consider new approaches and ways to collaborate to meet the needs of MBC patients, who are often left out of conversations focused on early stage breast cancer.
The Avon-Pfizer Metastatic Grants Program focuses on improving the quality of life and outcomes of those living with advanced stage breast cancer. Bringing together partners including community-based organizations, hospitals and patient advocate groups, the program aims to develop best practices in comprehensive care to meet the unique needs of this patient population. In 2017, the program awarded a total of $1 million in grants to 22 non-profit organizations across the U.S., bringing the investment since program inception to $2 million to support and educate metastatic breast cancer patients, their caregivers and their communities.
“Having patients present at the retreat to share their perspective was really impactful and inspiring. I think the patient presence made us uniquely focus on this special population that we are serving. Their participation was essential.”
– Participant feedback
Informed by lessons learned through first round grantees in 2015-16, it was clear that MBC patients have a variety of needs spanning medical, psychological, nutritional, integrative care, support, financial and legal support. Drawing from the findings of the first group of grantees, the Avon-Pfizer Metastatic Breast Cancer Program developed a white paper to share emerging practices for best meeting the challenges that patients face when seeking care and maintaining quality of life. The white paper can be accessed here, with executive summary here.
To ignite conversation at the start of the year-long grant term, the retreat focused on ways to address the most pressing needs of metastatic patients. Some findings from the retreat include:
- Patient navigation may look very different for metastatic patients as compared to those with earlier stage breast cancer: Clinical care for MBC patients is an ongoing cycle of scan, treat and repeat to determine the best course of treatment at any given time. At some point, treatment options will no longer be effective – patient navigators are important partners for helping a patient make these decisions with their care team. In addition, navigators who support MBC patients have to consider needs beyond clinical care – legal services, integrative medicine and nutrition services to name a few. Financial needs and basic support (e.g., transportation and childcare) are barriers that navigators help their MBC clients overcome to get appropriate, timely care.
- Clinical trials are becoming more accessible to MBC patients as information about them becomes increasingly available: Organizations like Breastcancertrials.org aim to demystify the clinical trial process and provide straightforward information about them to potential patients. By partnering with advocacy organizations, Breastcancer.org‘s Metastatic Trial Search provides diverse communities with access to information about their options for care.
- Support groups focused on advanced stage breast cancer are vital for patients’ emotional wellbeing: A patient shared her experience as part of a small support group that had only MBC patients in its membership. She found the experience important for her emotional health, as those in the group understood the issues she was facing and the difficult decisions she needed to make for herself and her family. Having a safe platform to share her challenges and fears, combined with feeling accepted and understood, reduced her levels of stress, anxiety and depression, allowing the patient to more confidently make decisions for her care and
- Virtual connections are important to connect those living with MBC: Many women living with MBC look to the internet for answers and support from others experiencing advanced stage breast cancer. Additionally, given the often-debilitating side effects of treatment, leaving one’s home for face-to-face interaction can be difficult. Patients look to social media to connect with others, as well as online resources, including Breastcancer.org, Living Beyond Breast Cancer and SHARE for virtual information about living with MBC.
- Holistic care is vital for those living with MBC: One patient shared her experience receiving integrative care, stating that it gave her hope because she was able to have moments without pain. Through the various healing modalities she received, she was able to relax and feel better overall. Developing community partnerships to help patients access services like yoga, massage and acupuncture was seen as a priority by clinic-only programs.
Participants left the retreat with the aim of developing new collaborations to enhance the range of services and support they are able to provide to their MBC clients and improve the quality of life for this patient population.