(BPT) - Cate Edwards, daughter of Elizabeth Edwards, became part of the cancer community in 2004 when her mother was first diagnosed with early stage breast cancer. Shocked and defiant, Edwards and her mother assembled the best team of healthcare providers and confronted the cancer with grace, courage and perseverance.
“I moved back in with my family to be with my mom through the early stages of her treatment,” said Edwards. “I was sure there was an end to cancer in sight and I wanted to see her through it.”
Less than a year later, they were able to breathe a sigh of relief when Elizabeth’s scans came back clear and she appeared to be in remission. Unfortunately, the cancer was not gone for good.
In 2007 the cancer returned. This time, it was metastatic breast cancer that had spread to the bone, which was treatable but incurable. Advanced breast cancer (ABC) is composed of metastatic breast cancer (stage IV) and locally advanced breast cancer (stage III), according to the American Cancer Society. Metastatic breast cancer occurs when the cancer has spread beyond the breast to other parts of the body, such as the brain, bones or liver. Locally advanced breast cancer means the cancer has spread to lymph nodes and/or other tissue in the area of the breast, but not to distant sites in the body.
The advanced breast cancer felt different. The focus turned from becoming a “survivor” to simply surviving, and Edwards and her mom sensed they were part of a new cancer community.
“Before my mom was diagnosed with advanced breast cancer, I assumed breast cancer patients fell into two categories – those who were “survivors” and those who were not,” said Edwards. “When Mom’s cancer metastasized, I realized this wasn’t the case. There is a community of cancer patients who are challenged by an unpredictable, chronic disease that they could live with for weeks, months or years.”
While there are many resources for early stage breast cancer, information specifically for the ABC community – which includes patients and those who care for them – has been limited. A 2012-2013 global survey of nearly 1,300 women in 12 countries, conducted online by Harris Interactive on behalf of Novartis Oncology, showed that 70 percent of U.S. women living with ABC often feel isolated and left out of the broader breast cancer awareness movement. Additionally, 75 percent of women with ABC feel resources to help family and friends cope with and understand the disease would be especially helpful.
To address the unique needs of the ABC community, the “Count Us, Know Us, Join Us” (Count Us) program was developed with guidance from 13 leading cancer advocacy groups. The Count Us program, which is available in English and Spanish at www.advancedbreastcancercommunity.org, provides education and support to patients, caregivers, loved ones and supporters.
In honor of her mother, who passed away in 2010, Edwards has joined Count Us as an ambassador to share her caregiver experience and to help amplify the voice of the ABC community.
“Anyone impacted by this disease – whether a patient, daughter, husband, friend or colleague – is part of the community,” said Edwards. “Living with advanced breast cancer means living with uncertainty, but knowing first-hand the struggles this community faces, there is one thing that’s certain: no one should face it alone.”
Rosalie Canosa, MSW, MPA, LCSW-R, Program Division Director, CancerCare, agrees more support is needed for the ABC community, which has different needs than the early stage breast cancer community, especially when it comes to caregivers who need support as well.
“Seventy percent of women with advanced breast cancer have a caregiver, whether it’s a family member who attends every doctor appointment or a neighbor who brings a meal once a week,” said Canosa. “However, caregivers are often so focused on helping that they underestimate support theymay need over time. That’s why I am happy that Cate is joining the Count Us program, to raise awareness for everyone in the advanced breast cancer community.”
For additional information on the Count Us program and resources for ABC support, as well as video messages from Cate Edwards, visit www.advancedbreastcancercommunity.org.