When Susan Grenda learned she had breast cancer four years ago, the diagnosis left her overwhelmed by a maelstrom of emotions.
There was disbelief.
There was confusion.
There was frustration.
There was sadness.
And, more than anything, there was fear – fear of the malignancy inside her, fear of surgery, fear of complications, fear of the effects on her loved ones, fear of the unknown.
Grenda's experience was by no means unique. Newly diagnosed cancer patients invariably confront an onslaught of worries and questions as they cope with the news, and those with breast cancer face additional concerns about body image, relationships and treatment choices.
A new program at UC Davis Cancer Center aims to make the first few months after diagnosis easier for women.
Known as the WeCARE Community-Based Breast Cancer Peer Navigator Program, the program matches breast-cancer survivors with newly diagnosed women for up to six months for one-on-one support. It was made possible through a $128,000 grant from the Safeway Foundation.
Safeway considers breast cancer one of the most significant women's health issues. Last October, the company's Breast Cancer Research and Awareness campaign raised more than $18.6 million from customers and employees for breast-cancer research, prevention and early detection programs.
"We are committed to working together with our employees, customers and supplier partners to help find a cure for breast cancer," says Karl Schroeder, president of Safeway Northern California Division. "But while we focus on the research, we see an opportunity to benefit from the lessons and experiences of survivors. Their success can be passed on and shared with others. We are pleased to partner with UC Davis Cancer Center and believe this program will go a long way in helping newly diagnosed women ultimately reach the road to recovery."
The first team of peer navigators, also known as cancer coaches, underwent training in January. Among the class of 14 recruits was Grenda, a Roseville mother of two.
"I think for most people who have not been through it, a cancer diagnosis just feels like a death sentence," says Grenda. "This program is an awesome idea because it not only gives new patients a resource, but also introduces them to vibrant, positive women who have come through treatment and continue to live fulfilling lives. That is huge."
Marlene von Friederichs-Fitzwater, the program's founder, could not agree more. She is an assistant adjunct professor with the UC Davis School of Medicine as well as director of the cancer center's Outreach Research and Education Program. She is also a cancer survivor.
Recalling her own experience at the time of diagnosis, von Friederichs- Fitzwater says new patients often feel helpless, bewildered and alone – even if they have supportive family and friends.
"The idea behind our program is that having an experienced, trained cancer survivor at your side can make a world of difference as you travel this path," von Friederichs-Fitzwater says. "We don't want anyone to have to make that journey alone."
A region-wide scope
More than 1,400 new breast cancer cases are expected in 2009 in the four-county Sacramento region, according to estimates from the American Cancer Society and the California Cancer Registry.
Not wanting to reserve the benefit of peer navigation exclusively for patients at UC Davis, von Friederichs-Fitzwater took pains to give the program a wide scope.
Toward that end, peer navigators are being trained to work with patients at Mercy General Hospital, at other area clinics, and through African-American churches and community organizations targeting Native Americans and other underserved populations. Coaches also are being sought to work with cancer centers in Marysville, Merced, Pleasanton and Truckee, which are linked through the UC Davis Cancer Care Network and committed to providing first-rate, community-based cancer care.
Mary Pat Kroll is the first peer navigator deployed at Mercy General Hospital. Kroll, who has been cancer-free for nearly eight years, has worked with two patients so far – and hopes to offer her services to many more in the coming years.
"When you first hear 'breast cancer' everything else becomes a blur, and you can't focus on anything except 'I've got the big C' and 'Am I going to die?'" Kroll says. "Next comes, 'How did I get it' and 'Why me?' And then you just want answers and information."
Living life to the fullest
Kroll says one element of her coaching approach is to share with patients how many wonderful things have happened to her since that fateful mammogram found a malignant lump in her breast. To wit: Two of her children have married, she has three new grandsons, she celebrated her 40th wedding anniversary, and she has traveled to Alaska and Hawaii.
"I live life to the fullest now, every day, and I think it helps for new patients to see that positive things can happen after a cancer diagnosis," Kroll says.
Kroll and Grenda also confirm a fringe benefit of the program that came as a pleasant but welcome surprise to von Friederichs-Fitzwater. While intended to support new cancer patients, the WeCARE program also helps the peer navigators.
"I think for women helping other patients there is a great sense of satisfaction and help with their own healing and recovery," von Friederichs-Fitzwater says. "They've been there and now they want to give back."
The concept of using "navigators" in health care is not new. Nurses or clinical social workers, however, have typically filled the role, and their focus has mostly been on helping patients with insurance and other administrative challenges, von Friederichs- Fitzwater says.
Peer navigators have a much closer relationship with patients and tend to help with a much broader range of needs. Contact begins by telephone but can include face-to-face meetings and even accompanying a patient to chemotherapy and radiation treatments or doctor visits.
"After a patient is referred to us, our volunteers will make contact and let them know this program is available," von Friederichs-Fitzwater says. "Some aren't ready right away, but we want them to know that if they need a fellow traveler, we're available."
The origins of the WeCARE program date back several years to a time when von Friederichs- Fitzwater and others became aware that the time between diagnosis and a patient's first appointment with an oncologist or surgeon was creating significant anxiety. At one point, the cancer center offered an orientation to these new patients, but attendance was poor. After that, a professional patient navigator was hired, but grant funding for that position ran out, says John Linder, a clinical social worker and psychotherapist assigned to the cancer center.
The WeCARE program is the third – and best – response to address the stress that patients feel in the early weeks following diagnosis.
"For some newly diagnosed patients, the idea of waiting six weeks for that first appointment can feel like forever," Linder says. "Cancer is not like heart disease, which you get from eating too much fettuccini Alfredo. It's like this alien monster inside of you, and you want it out now."
Part of the peer navigator's job would be to reassure those patients that for most cancers the waiting period is not going to make a significant difference either in the staging of the cancer or the proposed treatment.
"Beyond that," Linder adds, "there is all the practical stuff people want to know. 'Tell me about radiation. Does it burn? How sick will I be with chemotherapy? What about a mastectomy?' You just can't put a value on the importance of talking with a survivor about all of these issues."
To qualify as a peer navigator, volunteers must complete a one-day training followed by monthly two-hour sessions led by a variety of medical and community professionals. Among the topics covered are productive communication techniques for talking to the doctor, confidentiality and patient-privacy issues, patient resources at the hospital and in the community, and how to recognize whether a patient needs psychotherapeutic help.
A substantial part of the training also focuses on problem-solving and coping techniques using the COPE model, which stands for Creativity, Optimism, Planning and Expert information (see Becoming a peer navigator).
As of March, about one in four newly diagnosed breast-cancer patients was requesting a peer navigator. Von Friederichs-Fitzwater believes interest will grow as news of the program spreads. She is conducting training for new peer navigators every other month and hopes to have 100 cancer coaches working in the community by the end of the year.
And that's just the beginning.
"This is a pilot program we are hoping to expand," says von Friederichs-Fitzwater. "After fully establishing the program in our region, the next step is to share the program throughout the United States. We want to be the national model and standard for cancer support."