By Kathy Kantorski
In the spring of 1999, a woman was diagnosed with stage 3 breast cancer. Her annual mammogram six months prior didn't detect any tumors; in a matter of weeks, the tumor had formed, and the cancer had advanced to a near-fatal stage. She underwent a lumpectomy, chemotherapy and radiation treatments. Her usual cheerful demeanor became shadowed by a cloud of exhaustion. Her golden hair was gone, then replaced by patches of gray fuzz which she covered with scarves and wigs. She was too weak and nauseated to cook meals for her family, as she had done every day for nearly 20 years. But she remained strong. She chose to keep her job, working at least four hours every day throughout the treatments. She went to church every Sunday, socializing with friends and sharing her experience. And she survived.
That woman is my mom. I was 17 years old when she fought and survived breast cancer, an impressionable age that allowed the experience to be permanently burned into my memory. And in the years that followed, I watched my mom struggle to thrive again. The severe physical and emotional trauma of the cancer meant her fight didn't end when she overcame the disease; it simply evolved into a different struggle. Her treatments caused early menopause, she underwent reconstructive surgery and she battled anxiety and depression.
My mom is not alone in her post-treatment struggles. One in eight US women will develop invasive breast cancer in her lifetime. You've likely heard of the causes, screenings and treatments, but not of the aftermath – until now.
The most common side effect from breast cancer treatment is fatigue. To combat this, experts recommend a moderate exercise program to increase energy levels, decrease depression and reduce pain. "Some studies show that regular exercise, such as walking 2.5 hours weekly, can actually lower the risk for cancer recurrence," says Dr. James Hamrick, the chief of medical oncology and hematology for Kaiser Permanente of Georgia.
Exercising the arms is recommended for women whose breast cancer treatment involved the removal of lymph nodes and radiation, as they are at risk of developing lymphedema, or swelling, in the affected arm. "Lymphedema may be mild and short-lived or become chronic. It may occur early after treatment or months or years later," explains Lisa Sherman, BSN RN, breast health nurse navigator at WellStar Kennestone Regional Medical Center. "Exercising the affected arm regularly to keep fluid from accumulating is important."
According to Jill Binkley, breast cancer survivor and executive director of TurningPoint Breast Cancer Rehabilitation, as many as 60 percent of breast cancer survivors face lingering issues years after their treatment that may prevent them from fully returning to their usual roles and activities, such as lifting their children, playing sports and work demands. She notes that initiating physical therapy, massage therapy and exercise within the first few weeks following surgery is ideal and can help women get back to a full life.
"Breast surgery and the side effects from treatment – hair loss, nausea, fatigue, weight gain, hot flashes – can wreak havoc on a woman's self-esteem," says Dr. Jane Lowe Meisel, medical oncologist for the Winship Cancer Institute of Emory University. "In addition, many women are used to serving as a support system for their loved ones. Learning to accept help and support rather than giving it can be very challenging."
Meisel recommends seeking support outside of your network of family and friends, such as in a support group. "Hearing from others who are going through or have gone through the same thing can help normalize the experience," she says.
Cati Diamond Stone, breast cancer survivor and executive director of Susan G. Komen Greater Atlanta, agrees. "I have found it immensely important to get involved in the breast cancer community and support organizations that help and empower others," she says. She goes on to note that reconstructive procedures can also do wonders to increase self-esteem. "After months or even years of treatment, you finally have control over how you look, how your clothes fit – how you feel about yourself. It's such a personal decision, but for me, reconstructive surgery was an important part of my healing process."
"Breast cancer is a challenge to the intimacy of even the best relationships," Binkley notes. This can be a result of low self-esteem and insecurity regarding physical changes in the breast(s), as well as fatigue and early menopause caused by cancer treatments. "The medicines prescribed can lower estrogen levels, cause vaginal dryness and lower the libido," adds Dr. Stephen Szabo, section head of community oncology at Winship Cancer Institute.
Communication surrounding the problem is imperative. "Given that intimacy can be challenging enough without cancer, I advise patients and their partners to open up and talk to one another," Hamrick says. "They can also benefit from additional expertise from a therapist or their gynecologist."
The worry of recurrence
Though the healthcare industry is getting better and better at detecting cancers early and treating them, there is always a risk that the cancer will recur. Binkley says, "When breast cancer treatment is complete, women need to trust and hope that the cancer will not return. Living with this fear of recurrence is one of the biggest emotional challenges faced by breast cancer patients."
This worry of recurrence will drive many women to "living test to test," as Hamrick puts it, meaning they need a scan or blood test with negative results to help them sleep at night. "Often, over-testing causes more problems and anxiety than it fixes," he says. "It's best to live a healthy, active life and be vigilant for new symptoms, but also learn not to panic with any new feeling. That's an understandably hard thing to do for a cancer survivor."
He goes on to explain that those who are years past their breast cancer treatment can often overestimate the threat breast cancer poses to their health relative to other risks. "Things like obesity, smoking and a sedentary lifestyle actually become larger causes of competing mortality. I like it when survivors are able to channel their motivation to beat breast cancer into healthier overall lifestyle choices."
Approximately 80 percent of women have estrogen-receptor-positive breast cancers, says Barbara Robey, LCSW, clinical social worker, counselor and coach for Chapman Cancer Wellness at Piedmont Healthcare. "In these patients, we recommend that they receive at least five years of either Tamoxifen or an aromatase inhibitor. These oral medications reduce the risk of cancer recurrence by 50 to 60 percent." The medication can have side effects like blood clots, cognitive impairment and menopausal symptoms, but Meisel adds, "There are a number of treatments we can use to help with these side effects, so it is important to mention these to your provider."
The silver lining
Eighty percent of women diagnosed with breast cancer do not die from their cancer, according to Dr. Laura Pearson, breast surgeon and medical director of the North Fulton breast program at North Atlanta Surgical Associates. "I like to use the analogy of cancer being like a flat tire, not a car accident," she says. "While it is something that cannot be ignored and you can't move forward until it's fixed, most likely you will get past it and continue your journey."
That being said, breast cancer survivors have the benefit of a newfound outlook on life. As Binkley puts it, "As a 15-year breast cancer survivor, there is not a day that goes by that I am not reminded in some way of my experience. But there is also not a day that goes by that I am not reminded of the blessing of having a husband, family and friends who have supported me every step of the way. Life is different, but can actually be better after breast cancer."
Jill Binkley, TurningPoint Breast Cancer Rehabilitation – www.myturningpoint.org
James Hamrick, MD, MPH, Kaiser Permanente of Georgia – www.kp.org
Jane Lowe Meisel, MD, Winship Cancer Institute of Emory University – www.winshipcancer.emory.edu
Laura Pearson, MD, North Atlanta Surgical Associates – www.nasasurgeryatl.com
Barbara Robey, LCSW, Chapman Cancer Wellness at Piedmont Healthcare – www.piedmont.org
Lisa Sherman, BSN RN, WellStar Health System – www.wellstar.org
Cati Diamond Stone, Susan G. Komen Greater Atlanta – www.komenatlanta.org
Stephen Szabo, MD, Winship Cancer Institute of Emory University – www.winshipcancer.emory.edu