Voices of Experience

While working with newly diagnosed breast cancer patients, I quickly learned the value of their early interaction with other women who had experienced breast cancer. They needed to talk to a peer who had survived all of the decisions that they were going to have to make over the next weeks and months. In the Breast Cancer Treatment Handbook three women from very different situations share their experiences, fears and thoughts on their journeys with breast cancer. Let me introduce you to Harriett Barrineau, Anna Cluxton and Earnestine Brown.

Harriet

Harriet's Story

Harriett was diagnosed with breast cancer in 1991 at the age of 44. At the time of diagnosis, she was married and had four sons. Today she also has four daughters-in-law and eight grandchildren. Harriett says, "This is what survival means."

Because of the characteristics of her tumor, she had a modified radical mastectomy and followed her surgery with chemotherapy. Over a year later, the resulting posture shift caused back pain and spurred Harriet's decision to have a prophylactic second mastectomy and immediate bilateral reconstruction.

As a Breast Health Navigator, I had the opportunity to work with Harriett. She often shared her fears, feelings, failures and triumphs during her breast cancer experience. Her honest and insightful reflections during her diagnosis, treatment and recovery are a source of comfort to other women who are just beginning their journeys. Harriett openly shares with other women what she has experienced. She tells them that they will not always feel hopeless and that there are going to be problems, but that with determination, they, too, can make it. She is the epitome of survivorship - the quality of using present coping skills and learning new skills to triumph over a seemingly insurmountable task.

Today, Harriett works full-time in her husband's accounting firm and has served as a Reach to Recovery volunteer. Harriett remembers how after her diagnosis, she searched for people who would share with her the ins and outs of the experience.

Al, Harriet's husband, provides the commentary in the Breast Cancer Support Partner Handbook.


Anna

Anna's Story

Anna was 32 years old and single when she noticed a flattened area below her left nipple. She performed monthly breast self-exams, but she had never felt anything different in this area. Gradually, she noticed that the area would flatten out more when she raised her arm. Anna mentally dismissed it as hormonal changes or recent weight loss, but continued to keep her eye on it. She had other important things to do-she was planning her wedding.

The wedding went as planned without any problems. She and her new husband, Brian, went to Jamaica for their honeymoon. During the trip, she noticed that she could now feel a lump under the flattened area of her breast. When they arrived home, she called her OB/GYN, who performed an ultrasound. The doctor immediately decided a mammogram was needed. Anna saw a surgeon and had a fine needle biopsy seven days after she had been sitting on the beach in Jamaica. Twenty minutes after the biopsy, she was told that it looked positive for cancer. "Brian and I were completely shocked," Anna told me. "I can't even remember what else the doctor said to us after those words."

One month after the wedding, Anna underwent seven hours of surgery for a mastectomy with an immediate TRAM flap reconstruction. All 16 lymph nodes removed during the surgery came back negative. Anna had chemotherapy. The day of her first chemo treatment, Brian shaved his head to show his support. "When other couples are supposed to be starting their new life together, Brian was sitting on the bathroom floor holding me as I was throwing up."

Anna recalls the experience: "Cancer changed our lives as individuals and as a couple. I was young-too young for breast cancer, some would think. But I learned from experience that breast cancer does happen to young women. I also learned that having cancer at an early age brings different types of problems to a woman and her spouse. Because of this I became involved in the Young Survival Coalition, an organization focused on supporting young women with breast cancer. I went on to get my MBA in healthcare administration and work in breast health, cancer genetics and now cancer prevention research. I feel like I am making a difference every day so that no one, in particular a young woman, has to feel alone when she is diagnosed with cancer.

Anna and Brian's life changed quickly. They were a very young couple facing a breast cancer diagnosis, but they allowed an unexpected visitor to turn their lives into a mission to help others.

Brian, Anna's husband, provides commentary in the Breast Cancer Support Partner Handbook.


Earnestine

Earnestine's Story

Earnestine was in her late forties in June of 2007 when she was diagnosed with infiltrating ductal carcinoma. She had seen cancer in her extended family, so she says that her diagnosis didn't come as a complete surprise. She was, though, concerned about how her family would cope with the changes cancer would bring. Her three children, Shannon, Krystle and Amber, needed her. Her aging mother needed her. She was the head of her household and, at the time of her diagnosis, held two jobs to pay the bills.

She didn't have time for cancer, but once she was diagnosed, she was anxious to learn what could be done. She underwent lumpectomy with lymph node dissection, chemotherapy and radiation therapy. She is currently being treated with Herceptin® and close follow-up care.

During her treatment, she learned to slow down and take care of her health. She also learned to depend on her family for support. Now, two years out from treatment, the side effects are mostly gone, and Earnestine has a new focus on taking care of herself and enjoying her children and grandson. She demonstrates the best of survivorship when she says, For me, cancer had its ups and downs-but I'm still here."

Krystle, her daughter, provides commentary in the Breast Cancer Support Partner Handbook.


As Survivors, we learn that survivorship is an attitude we adopt. It is the one component of recovery that no one else can do for us. We have to decide for ourselves how we intend to respond to our illness and how we will approach our recovery. We, alone, decide to become Survivors.

Judy
EduCare President