Breast cancer survivor Rebecca Johnson shares her story of recovery
Every year more than 200,000 women face a diagnosis of invasive breast cancer. Thanks to the national spotlight on organizations that raise funding and awareness for breast cancer research, women know much about those who fight a breast cancer diagnosis – through mastectomy, infusion therapy, radiation and reconstructive therapy. Although many women share success stories about treatment, fewer stories convey the challenging and often painful recovery process survivors endure to get back to the life they love.
Kansas City mom of three, and pediatric psychologist Rebecca Johnson discovered a lump in her breast during a self-breast exam in 2013. She immediately contacted her OB/Gyn for a clinical exam. After a referral to a contracted radiology group and undergoing several tests, Johnson was left with the feeling the radiologist and her OB/Gyn were not communicating adequately with each other, or with her, about the results.
Frustrated, she turned to Saint Luke’s Hospital’s Breast Center and surgeon Dr. John Shook, who ordered needle biopsies, and ultimately diagnosed Johnson with HER2-positive invasive lobular carcinoma, an aggressive cancer.
Based on a recommendation by Dr. Shook, Johnson underwent bilateral mastectomy. Subsequent chemotherapy prescribed by Saint Luke’s oncologist and breast cancer specialist Dr. Timothy Pluard included a regimen of four months of chemotherapy and a year of the drug Herceptin, which has been shown to be highly effective in treatment of HER2-positive invasive lobular carcinoma. The down side to chemotherapy? All of Johnson’s hair fell out. The up side? Her hair grew back, but curly. “Like Annie,” says Johnson.
After initially undergoing reconstructive surgery, she suffered a setback with an infected tissue expander in one breast. This led to her decision to have them removed from both breasts and opt out of reconstruction. It was during the emotionally challenging time before her bilateral mastectomy that Rebecca met licensed therapist Linda Huber at Saint Luke’s Cancer Institute.
“I was experiencing anxiety about the day of my surgery, and Linda helped me to develop strategies to get through that day,” says Johnson. Linda also introduced Rebecca to the STAR program® for cancer rehabilitation, which helps patients through the long-term recovery process, including survivorship, training and rehabilitation.
“People often focus on the short term – the surgery, infusion and radiation – while the long-term recovery is something people don’t think about,” says Huber. “Cancer survivors often need help overcoming the physical and emotional challenges that follow cancer diagnosis and treatment.”
Research drives the STAR program, which is administered by trained therapists, nurses, dieticians and doctors, and addresses factors such as diet, emotional outlook, endurance, pain, sleep and strength. Johnson took advantage of Saint Luke’s massage therapy program to help with relaxation and pain.
“During this time I read an article about women who underwent double mastectomy experiencing chronic pain,” says Johnson. “I began asking about the possibility of doing physical therapy as part of my recovery.”
With the support of Dr. Pluard, Rebecca began physical therapy through the STAR program with Saint Luke’s physical therapist, Mackenzie Messina.
“After four surgeries and treatments, Rebecca’s body was de-conditioned, and she was in a great deal of pain, to the point she had resorted to sleeping in a chair,” says Messina.
Messina focused physical therapy sessions on stretching, and returning Johnson’s full range of motion and mobility. The initial goal was to alleviate pain and improve posture to allow her to return to sleeping in a bed, because the body cannot fully recover without sufficient sleep. Once that was accomplished, Messina moved on to strengthening of Johnson’s core and conditioning. During their four months together, physical therapy produced tangible results.
“Mackenzie was positive and upbeat, and encouraged me to be active. I began to feel much better,” says Johnson. “The first time I slept in my bed, it was a huge accomplishment in terms of my quality of life. I felt normal again.”
The STAR program provided Johnson a personalized plan designed to increase strength and energy, improve her physical function, alleviate pain, boost the immune system, and help Johnson achieve emotional balance.
Physical therapy proved to be a key to Johnson’s recovery. For several months during her surgery and subsequent recovery, Johnson worked from home, using her laptop while sitting in a comfortable chair. When she returned to work full-time, Johnson found that simply sitting at a desk and other normal activities became a challenge.
“I was carrying a backpack, walking around the hospital, standing quite a bit and generally using my muscles again. Once I really began moving, using my muscles and putting in a full day’s work, I found myself in a lot of pain,” says Johnson. She returned to Messina for help.
A second round of physical therapy focused on strengthening her core enabled Johnson to tolerate a fully active day. While the second round of therapy lasted only six sessions, each time Johnson gained new tools and advice that led her down the path toward a normal, active life. She continues to improve each day.
More than a year after surgery, Johnson focuses on advocating and raising awareness about the importance of coping, recovery and regaining quality of life for cancer survivors, long after surgery. She credits the program’s long-term therapy approach with allowing her to return to a full and complete life with her family.
“Ultimately, I’d like to see all breast cancer survivors given access to these tools,” says Johnson. “I think every woman needs to figure out what is best for her, and I feel strongly that women should know about the potential benefits of the STAR program so they can make informed choices and access services they need to promote their recovery. Linda and Mackenzie provided me with opportunities to regain my quality of life. I am hopeful about the future and excited to share my experience with others.”