After the surgery, radiation and chemotherapy for breast cancer lies the next phase of a person’s life.
Survivorship refers to that time, often beginning at diagnosis and through long-term survival, when the physical and emotional after-effects of breast cancer treatment may linger.
Now, South Florida hospitals are taking an active, more comprehensive approach to survivorship, instituting programs to address that next phase — to improve patients’ quality of life and empower them to live healthier lives after cancer.
“We recognize that survivorship comes with challenges, and they have to face a lot of physical changes from treatment, as well as social, spiritual, familial, professional and financial challenges,” said Dr. Carmen Calfa, an oncologist who specializes in breast cancer at Memorial Breast Cancer Center in Hollywood.
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Breast cancer is the most common cancer among women in the United States, other than skin cancer. And with early diagnosis and successful treatment options, the number of breast cancer survivors has grown to more than 2.8 million nationwide, according to the American Cancer Society.
So, the American College of Surgeons’ Commission on Cancer has said it expects every accredited cancer treatment center to have survivorship care planning as part of their standard of care by January 2015.
Although survivorship lasts a lifetime, Calfa said she has found that the first three months after the conclusion of active treatment is when patients experience the most distress.
“They are very comfortable during active treatment,” she said. “Getting chemotherapy and seeing us so often reassures them that they are OK.” But when the immediate threat is over, they feel that their safety net has disappeared.
“They should be celebrating, and they look scared, thinking, ‘what if I am not OK?’ It is the anxiety from going away from the oncologist they trust and knew that they were in charge, and they are afraid of something happening,” Calfa said.
“That is where we feel we can fill the gap, when they say, ‘What is next? We can say here is what is next.’ ”
At Memorial Cancer Institute, the survivorship program begins with a care plan introduced at the time of diagnosis by a hospital caregiver called a “navigator,” Calfa said. The navigator takes the patient from the first sign of cancer, through the testing, to months or even years of treatment and beyond.
The plan includes an assessment of the patient’s health before diagnosis, so that they can work to regain any functionality that is lost, and manage the late and long-term effects of cancer treatment, Calfa said.
Doctors say the effects may include fatigue; nerve pain and nerve damage; difficulties with concentration or cognitive dysfunction; pain, insomnia; swelling, pain and fluid retention in the upper extremities related to surgery of the lymph nodes; weight gain; depression and fear of recurrence. There also may be issues related to cardiovascular health, bone health, and sexual issues from the sudden onset of menopause that is related to treatment.
Survivorship plans can cover all the patient’s ongoing medical needs, including ongoing check-ups from oncologists plus medical care from other providers, as well as the nonmedical needs.
“As part of the survivorship care plan, there are social and spiritual and emotional needs, so we provide support groups, psychologists and nutritionists,” Calfa said. There are also pain specialists, social workers, a massage therapist, an acupuncturist, and access to fitness centers and yoga classes.
Alicia Melara, a breast cancer survivor, was referred to Memorial’s Pink Ribbon yoga class by a Memorial Cancer Institute psychologist. She credits the weekly classes at Memorial Hospital West Fitness Center in Pembroke Pines for helping relieve stress. Melara, 53, of Davie, said she enjoys the camaraderie from class participants and has found that yoga calms her. “My mind doesn’t stray as much,” she said. “It keeps me centered.”
Memorial’s “Next Steps” program helps patients deal with their questions about what to eat, whether they can drink and how much to exercise. The program has an “Image Recovery Center” at Memorial Hospital West in Pembroke Pines that offers hair cuts, wigs, manicures and pedicures. Each year, Memorial also puts on an event called “Breaking the Silence,” which provides networking, education and healing.
Dr. Beatriz Currier, a psychiatrist and medical director of the Courtelis Center and Cancer Support Care Services at UM-Sylvester Comprehensive Cancer Center, says the three most common after-effects for breast cancer survivors are fatigue, cognitive difficulties and depression. Preventing weight gain is the biggest long-term challenge, she said.
At Sylvester, the Breast Cancer Survivorship Program’s first goal is to screen and manage the survivor’s symptoms; the second goal is to promote wellness and preventative health behaviors, said Currier, medical director of the survivorship program.
“Every women who comes in is screened by an oncologist, psychologist, nutritionist and exercise physiologist,” she said. “A key component of our program is you have to eat right and you have to start exercising, because we want to make sure they don’t gain weight, because obesity is a risk factor for breast cancer.”
As a result, patients are given an exercise and fitness plan, a nutrition plan, and access to an on-site fitness center.
“We are also offering various mind-body therapies such as yoga, meditation, mindfulness, and in the next month we are starting tai chi,” Currier said. “There is also acupuncture and massage.”
Multiple therapies are available. So, for example, if a patient has pain, she can be treated with medication, exercise, acupuncture or a combination of all three, she said. Likewise, if a patient is depressed, she can be treated with medication, psychotherapy, exercise, or all three.
“There is increasing evidence that untreated depression may also be a risk factor for recurrent breast cancer, so we are very vigilant in screening and treating these women for depression, and it’s absolutely critical that this get addressed,” Currier said.
Sylvester’s survivorship program, which started at the end of October and has so far treated about 50 patients, offers five different specialists who can all see a patient in one day: a breast oncologist, psychiatrist, palliative care specialist, cancer rehab specialist and integrative medicine specialist. That’s in addition to a nutritionist and exercise specialist.
Four new patients can begin the program each Monday.
“It has just been a life-changer for many of these women,” Currier said. “It empowers women with the knowledge and tools to live a healthier life.”
Baptist Regional Cancer Program also has created a survivorship program for breast cancer survivors.
“The program’s goal is to provide as good a quality of life as possible, so we try to educate them about lifestyles associated with lower recurrence rate and improved survival, like exercising, avoiding obesity, and following a low-fat diet for breast cancer,” said Dr. Grace Wang, a breast cancer medical oncologist and chairperson of the Cancer Committee at Baptist Regional Cancer Program.
“And we try to improve their survival from any second malignancy by screening — routine colonoscopy, routine pap smears, skin exams for the risk of skin cancer and low-dose CT scans for lung cancer and routine mammograms” as well as checking cholesterol, blood pressure and other aspects of overall health, she said.
In addition, the aim is to help patients manage the side effects of their breast cancer therapy, such as neuropathy, osteopenia, fatigue, anxiety, fear of recurrence, hot flashes, insomnia, or vaginal dryness, and to deal with the social effects on family relationships, jobs and finances. The program incorporates mapping out a plan, as well as helping the patient maintain an active life and normal body mass.
Surviving cancer, Wang said, “is a wake-up call to live the remaining days as full as possible and as healthy as possible.”
Carmen Kuznik, who was diagnosed with breast cancer three years ago, is a patient of Wang’s.
“She looked at every area of the care of cancer, beyond strong chemo — my nutrition, exercising and state of mind, and that is how we got through it,” said Kuznik, 43, who has undergone a bilateral mastectomy, chemotherapy, radiation and a hysterectomy. “Every three months she is checking on me, to see that I am doing everything that I was before cancer.”
Kuznik, of Coral Gables, also attends monthly group support sessions of Bosom Buddies, a support group at Baptist for breast cancer survivors. She serves as a mentor to two other women in the group — one who is finishing up treatment, and another who has had a cancer recurrence.
The hardest lesson, Kuznik said, has been to accept that she doesn’t have control of anything. Each survivor has to learn her own coping strategies, she added.
“When I am feeling very down, I give myself 15 minutes. I let myself have a pity party. I cry, or if I want to pray, yell, I get it out,” she said. Then she will go back to her regular activity. “I don’t want to minimize that I have those feelings, but I don’t want to let them take control like I used to.”
For Kuznik, the Bosom Buddies meetings she has attended since she was diagnosed have been invaluable.
“I couldn’t imagine moving forward,” she said, “without that program.”