Why Community-Based Programs for Breast Cancer Survivors Might Be as Important as Treatment

In February 2019, Debbie Mendoza was diagnosed with lobular breast cancer at the age of 59. The retired teacher living in Austin had to go through various treatments in her fight against the disease—chemotherapy, a mastectomy, radiotherapy—during which she also contracted a severe bout of pneumonitis, which is inflammation in the lung tissue. When she was declared cancer-free in March 2020, recovery in the middle of the pandemic looked like a long, winding road.

“I was lacking energy,” Mendoza says. “I wasn’t doing much. I was just sitting on the couch, watching TV, and that’s not good because I was not getting any stronger.”

Mendoza had already gone through her required physical therapy and occupational therapy, but she felt that it didn’t help her. That’s when she joined a local evidence-based, community-based program called Active Living After Cancer (ALAC) which focuses on the importance of physical activity, group support, and behavioral skills.

“I know I needed something,” Mendoza says, adding that she tried to go to the gym but didn’t feel safe enough. ALAC is a free 12-week fitness program, now carried out online because of the pandemic, in which survivors come together to do physical exercise, share their stories, and talk about their overall goals for recovery.

“At first, our homework was to do a two-minute walk every day for the week,” Mendoza says. “I didn’t believe a two-minute walk was going to help me, but next thing you know, I was on five minutes, and I ended up at 10 minutes by the end of the week. Once I got started, I realized I felt better, and I didn’t want to stop.” Now, with the help of her dog, Mendoza walks a mile and a half every morning.

Many breast cancer survivors struggle with knowing what to do after treatment for cancer ends, although research increasingly shows how vital support and resources after care are to overall health. Some survivors have trouble living life like they used to, and are affected by a lot of distress, especially after their relationship with healthcare providers slowly fades. Other research suggests that breast cancer survivors who exercise after their cancer diagnosis have a lower risk of death from cancer,  and cancer patients have a better quality of life and better physical functioning. In fact, breast cancer survivors who participated in the Active Living After Cancer program like Mendoza, for example, significantly increased their physical activity and health, according to research conducted by The University of Texas MD Anderson Cancer Center.

“There is a big gap in understanding the issues of quality of life for breast cancer survivors and providing continuous support.” – Marina K. Holz, PhD

Better understanding what works for survivors, what patients should be looking for, and what facilities should be doing more of would help implement homogenous aftercare programs that cater to the needs of everybody, including medically underserved populations. This could radically change the way cancer survivors across the US recover from the disease, lower the number of deaths, and alleviate families from the complications of caring for their loved ones affected by cancer on their own.

“One of the successes of recent years is promoting awareness of breast cancer and the need for early detection. However, there is a big gap in understanding the issues of quality of life for breast cancer survivors and providing continuous support,” Marina K. Holz, PhD, Dean at the Graduate School of Basic Medical Sciences at New York Medical College, says. “For these patients, cancer is essentially a chronic disease, and it comes with a physical and psychological toll.” Many patients who completed their primary treatment, continue endocrine therapy for five to 10 years, and this is often associated with significant side effects, according to Dr. Holz. Plus, many survivors fear recurrence or experience survivor’s guilt.

“While several previous studies described the benefits of physical activity for cancer patients, implementing an exercise intervention that could be done at home without having to go to a gym makes it more accessible,” Dr. Holz says.

Other than providing physical activity, the strength of this program also lies in the behavioral skills classes the professionals teach, according to Karen M. Basen-Engquist, MD, a researcher in the Department of Behavioral Science, Division of Cancer Prevention and Population Sciences at the University of Texas, who has researched and contributed to the ALAC program.

“We teach things like, how to set smart goals, how to monitor your progress towards those goals, how to reward yourself, and how those goals fit into the larger vision for your life and how you want to live your life,” Dr. Basen-Engquist says, explaining how important a source of support is during the times of recovery.

“Having somebody else who’s been through something similar to what they’ve been through and can listen and share experiences… that’s really helpful to them in terms of their mental health,” Dr. Basen-Engquist says. “The group-based intervention is really the secret sauce of this program.”

Additionally, ALAC stresses the importance of recruiting participants from community settings and focusing on participation in racially and economically underserved populations. That’s because these factors impact the rate of getting and dying from breast cancer. People in underserved populations “have significantly lower rates of breast cancer screening, greater probability for late-stage diagnosis, and very often receive inadequate and disparate treatment, resulting in higher mortality from breast cancer,” Kimberly S. Reed, vice-chair of American Cancer Society’s Northeast Leadership Council, says. According to Reed, disparities in cancer care can be improved in several ways, including by creating statewide cancer screening programs that are accessible to traditionally underserved populations.

In fact, associations like Active Living After Cancer want to continue to expand these types of programs, maybe even license them for private healthcare institutions to make sure that everybody who needs them can access them, according to Dr. Basen-Engquist. “Expanding it to as far-reaching as possible, that’s the dream.”

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