Since her diagnosis of metastatic breast cancer two years ago, Karen Peterson has been amid a whirlwind of medical appointments and healthcare professionals. It’s often overwhelming.
“Managing it all is like a job,” the 54-year-old New York City resident said in an interview with Breast Cancer News. “Between my social worker, clinical nurse, oncologist, dentist, massage therapist, physical therapist, and on and on, that’s a lot of people and phone numbers.”
Now that she’s begun using a new app designed for people like her, however, Peterson can better focus on treatment and other areas of her life.
Called My MBC & Me, the free mobile iOS application was launched in early April by SHARE, a non-profit organization that supports women affected by breast or ovarian cancer. Designed with input from physicians and patients, its purpose is to empower those living with metastatic breast cancer (MBC) to better manage treatment and communication with care teams.
Not only does it track appointments, symptoms, medications, treatment history, and side effects, the user-friendly app provides disease and treatment information and personalized reminders. It offers a questionnaire to help users outline priorities and goals, and lets them pin research, notes, voice memos and questions to calendar appointments, fostering self-advocacy and more productive visits with doctors.
Other features include My Story, which helps patients reflect on needs, and helps physicians understand their patients’ lives. My Schedule helps patients track appointments, treatments, and symptoms by month. My Notes helps patients identify treatment goals, and gives them a place to log research notes and questions for attachment to their appointments calendar. In My Treatments, patients can list medications and side effects.
Likely because of an aging U.S. population and improvements in treatment, the number of women living with MBC — breast cancer that has spread to distant regions outside the breast — is increasing. Although definitive numbers are hard to come by, Christine Benjamin, SHARE’s breast cancer program director, puts the U.S. estimate at 155,000.
For these patients, simply keeping track of everything is so time-consuming that it becomes a major focus, Benjamin said. And because doctor visits have time constraints, it’s important to be able to identify and express issues efficiently and concisely.
“We ask people to assess who they are as patients and people in the world, what their goals are for treatment and life,” she said, adding that the app serves men, too. “For example, there’s a woman who’s a long-distance runner. It’s a huge part of who she is and what she does. Doctors should know this, because treatment could possibly cause neuropathy in her feet.”
Patients can also use the app’s voice memo function to help them communicate with doctors. Those recordings can be played en route to or during appointments. In addition, patients may download or email information they wish to share with physicians. If desired, photos may be attached.
The app’s symptom tracker can also help during appointments. “Someone might have a treatment every three weeks,” Benjamin said. “But by the time they see a doctor they may forget about symptoms. The spouse will say, ‘What about the vomiting, or when you couldn’t get out of bed for three days?’”
My Story makes patients think about things they might not ordinarily. Some patients will likely share what they write with their care professionals.
“Every patient wants the doctor to treat the whole person,” she said. “We know they’re experts, but we want them to know we have lives — or not. They can refer a lonely person to some services.”
Two years in the making, My MBC & Me was inspired by a focus group volunteer who has the disease. The patient had expressed concern about maintaining a certain quality of life, especially after a failed treatment.
“But she had difficulty talking to her doctor about that,” Benjamin said. “She was highly educated and articulate, and she had difficulty communicating. It can be intimidating. People feel like they’ve asked a question already, or they don’t want to waste doctors’ time.”
Not only does she use My MBC & Me, but Peterson also contributed to its design. Two years ago, she met SHARE representatives at an MBC conference. They told her about their idea, and she and a couple of other patients shared their views and needs via satellite.
“They took our opinions and put them into codes, and we had beta runs,” said Peterson, who is divorced and has a grown son. “I’m glad to see it come to fruition. Apps are the wave of the future.”
The next year, Peterson summoned the will to return to school to learn computer coding. Coincidentally, she’d wanted to build a healthcare app. Then came one day in November.
“I was walking up Fifth Avenue to class when I felt a pain in my chest that brought me to my knees,” she said. “I thought it was the tissue expanders in my chest giving me issues.”
She graduated that December. Then, an early 2017 doctor visit turned up high liver enzymes. A subsequent computed tomography (CT) scan revealed worrisome spots in her spine, lungs and pelvis. In April, she got word: stage 4 triple-negative breast cancer.
“I had prepared myself for the worst,” said the Pennsylvania native, whose grandmother died from metastatic breast and ovarian cancer at 44.
By the summer of 2017, Peterson had, as she put it, clawed her way to an immunotherapy clinical trial. Through July, when the trial ends, she’s treated every 21 days. She sounds upbeat.
“I’ve had no progression,” said Peterson, who now works as an adviser in clinical trial inclusion. “Right now I’m trying to lose 15 pounds of protective weight I put on in case I’d lost weight during treatment.”
Still, it’s been all she can do to stay atop everything. Although she’s just begun using the new app, it’s already making a difference.
“My teams of doctors have teams,” she said, chuckling at the volume of medical professionals in her life. “I wish this app was out there a few years ago. It keeps everything nice and tight, all my appointments, goals, care teams.”
Peterson also finds it useful to punch in goals for each doctor visit. That way, she no longer has to bring someone along to help jog her memory. She also likes that she can use the tool to record physicians’ comments during appointments and not have to take notes.
And, she appreciates that, in the section on disease and treatment, SHARE includes information on triple-negative subsets.
“I love that they acknowledge that subsets exist,” she said. “A lot of people never heard of them. It makes me understand that they realize that triple-negative is not the same for everyone. It’s personalized for us, and that follows the trend toward precision medicine.”
On some issues within treatment and disease, patients are encouraged to “ask your doctor.” Peterson values that as well.
“Sometimes it’s what you don’t ask. We’d love for the doctor to handle everything all the time,” she said. “But it’s not a perfect world.”
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