Eleven years ago Christiane Brems got the news she had breast cancer over the phone.
"I said, 'What does that mean? Am I going to die?' "
"I don't really know," her doctor told her.
When she wanted to get a second opinion, she had to fly out of state. When she wanted to forgo chemotherapy and opt for alternative therapies, she had a hard time finding a doctor who would work with her.
A breast cancer diagnosis is hard, but what can be harder is everything that comes with it: navigating the health-care system, finding physicians, dealing with side effects, deciding what to tell people at work.
Brems, who survived her cancer, is now co-director of Behavioral Health Research and Services, a University of Alaska research center. She's heading up a study aimed at improving the lives of women with cancer. She's looking for female cancer survivors, including women still in treatment, who want to participate by answering some survey questions.
The study is funded by Providence Alaska Medical Center, the Alaska Comprehensive Cancer Partnership, and Breast Cancer Focus, Inc. Brems hopes to find 600 participants.
The requirements to be part of the survey are that breast cancer survivors are over 18 and live in Alaska. They must also be female.
"We're basically trying to figure out what their unmet needs are," she said.
Breast cancer is one of the most prevalent cancers in the state, she said. The idea is to make the process smoother for women. The results of the study will, it is hoped, guide medical care facilities. Focus areas include coordination of care, availability of care, talking with doctors, side effects of therapies and life issues like talking about cancer at work.
The survey should be available by the end of next week.
The idea for the study came from Providence, Brems said.
"The stimulus ultimately came from women themselves," she said.
Find Julia O'Malley online at adn.com/contact/jomalley or call 257-4591.
Give your opinion
To participate in the survey:
Complete it online at bhrs.uaa.alaska.edu/
Those without e-mail access can call Behavioral Health Research Services at 561-2880 to have a survey mailed to them.
For questions, call 561-2880 or e-mail firstname.lastname@example.org