A diagnosis of breast cancer at any age can be one of the biggest challenges a woman faces in her lifetime. For those dealing with such a life-altering event in their early years, it can be particularly devastating.
When women are caring for young families, building careers, involved in new relationships and beginning to achieve what they want in life, they suddenly find themselves battling a killer that could take it all away.
It can be a lonely battle for the five percent of breast cancer patients diagnosed before menopause. When they turn to support services, they find many aspects are geared to women in a different time of life who are dealing with a different set of issues.
Improving the quality of life of young breast cancer survivors and helping them find the support they need is the purpose of the Young Breast Cancer Survivorship Network, an initiative developed through the UAB School of Nursing by researcher Karen Meneses, PHD, RN, FAAN. The project is funded by a two-year, $150,000 grant from the Community Foundation of Greater Birmingham’s Women’s Breast Health Fund.
“We bring together health professionals, advocates and organizations in an interprofessional partnership to support young survivors,” Meneses said. “Our resource navigator is a social worker who can help identify needs and solutions, and put survivors in touch with support options.”
Young survivors can speak one on one with a registered nurse in person or by phone if they want to discuss specific issues.
“Often one of the biggest concerns is their children,” Meneses said. “When mommy comes home tired from chemo, small children still need care and life still goes on. How do you explain to a young child why mommy is losing her hair, and how do you help them if they hear the word cancer and become fearful?
“Young survivors are usually dealing with a different social context than their mother’s generation,” Meneses said. “When a young woman’s childbearing years are interrupted, she may face additional issues with fertility and pregnancy. The impact on relationships and body image can be magnified.
“If the mom or her children need counseling, it’s available through the Oasis Center. When cancer occurs before she is able to have the children she wanted, we can refer her to UAB’s Reproductive Endocrinology and Infertility specialists to discuss possibilities for preserving or restoring fertility.”
Silvia Camatta, RN, MPH, works with Meneses on the survivorship network, and they also joined forces in a recent outreach program to help rural breast cancer patients in the black belt counties of south Alabama and among the Spanish speaking population of northeast Alabama.
“What I often hear when I talk with young breast cancer patients are concerns about their career,” Camatta said. “Their families often depend on two paychecks, and they are frequently at a stage in their career when they are proving themselves. Somehow, they have to stay focused at work even if they are tired or experiencing a temporary brain fog from treatment. They worry about losing their jobs if they need too much time off for treatment or how they are going to keep their mind on their work when they are worried about their family and their health.”
One thing that seems to help young survivors a great deal is being able to talk with others their age who have been dealing with the same issues. In cooperation with the American Cancer Society’s Young Breast Cancer Support Group, the network presents ‘Lunch and Learn” programs every second Wednesday at 11:30. Speakers offer suggestions on topics ranging from managing fatigue to strategies for working around the temporary effects chemotherapy can have on mental clarity.
The network also puts young survivors in touch with resources offered by the UAB Comprehensive Cancer Center, the Shelby, Walker and Princeton Baptist Medical Centers, and the Susan G. Komen Foundation.
“Younger patients are also accustomed to communicating in different ways. Much of our program is web based, so those who are balancing careers and young families can access it on their own schedule,” Meneses said. “We also plan to implement YouTube videos next year that will address particular topics like managing lymphedema and how to pick up a child when you’re healing.”
The network will also be sponsoring a conference February 16 that will bring together health care professionals, advocates, resources and information on helping young breast cancer survivors access the support they need.
Meneses, who has been a cancer nurse for 38 year and is Associate Dean for Nursing Research at UAB, said the initiative grew out of the patient support role that has always been a natural component of nursing.
“The heart of nursing is direct care, education and support,” Meneses said. “Nurses have the public’s trust, so we can be effective in the community. We’re out on the pavement in outreach programs working directly with patients. The latest research findings aren’t just left on the shelf. We take evidence-based information to the public to deliver the best quality of care—and as in this case with young survivors, we offer support to make patient’s lives better.