Ellie, a 63-year-old widow from Aurora, watched her mother die from breast cancer, so the disease was familiar territory. Yet when her doctor told her she had a cancerous breast tumor in 1996, she was overwhelmed by the new treatment options and by the severity of the diagnosis.
“Even with my family background, it was frightening,” said Ellie, who asked that her real name not be used. “And I had so many questions.”
She said she was relieved to meet Cindy Platt of North Aurora, a Reach to Recovery volunteer dispatched by the American Cancer Society to Ellie’s bedside. Like Ellie, Platt had had a lumpectomy and lymph node excision. She knew firsthand how the word “cancer” triggers chills and the complicated emotional and physical repercussions of breast cancer.
“When Cindy came to see me at the hospital, she helped me sort through all the information in the booklets about followup treatments, and she gave me an exercise video that showed me how to exercise my arm and shoulder,” Ellie recalled. “After I got home, she called and we talked about my concerns about recurrence, about diet and exercise. When I wondered about when I’d get back to work, I was encouraged to hear that Cindy went back soon after surgery. She was very low-key but made herself available when I needed to talk. And she made sure I had enough family help during my recovery.”
Launched in 1952, Reach to Recovery is an American Cancer Society (ACS) program for breast cancer patients. The Glen Ellyn ACS office has 25 Reach to Recovery volunteers who work with patients at DuPage County hospitals. The Batavia office has 50 volunteers who are on call with hospitals in LaSalle, Kane, Kendall, McHenry and DeKalb Counties. (One in 100 breast cancer patients referred to the program is a man, and the ACS has a limited number of male volunteers.)
Volunteers must be breast cancer survivors, at least a year past diagnosis, be physically and emotionally adjusted and have a reference from a health-care provider. The unofficial qualifications include empathy, concern and the ability to listen.
The ACS trains the volunteers in all aspects of helping breast cancer patients, then requires them to keep up with advances in the field and become recertified every two years.
When a Reach to Recovery volunteer meets with a patient, she provides information ranging from fact sheets about such treatment as radiation and chemotherapy, post-surgery exercise suggestions and sources for prostheses, wigs and other products.
Although volunteering means being on call daily, the timing is key, said Nancy Libby of Oak Brook, a Reach to Recovery volunteer who sees Hinsdale Hospital patients.
“From your mammogram to surgery, you may have two days to absorb a lot of information and make a lot of decisions,” Libby said. “Should I have a mastectomy or lumpectomy? What about chemotherapy? When you have these choices, they are very difficult to make. After surgery, you go home as early as the next day. Then you need permission to let others take care of you and to cry.
“Hearing that word `cancer’ is traumatic, even though most women today know that early detection means survival. We’re not dealing with the flu here; cancer can kill you.”
Libby said she understands the shock of the diagnosis because she was typical of many of the patients she sees; they don’t anticipate breast cancer because they are what the textbooks call low risk.
“I didn’t have cancer in the family; I had children at a young age; I never smoked a cigarette,” she said.
Reach to Recovery supplements the patient’s medical care, said Mary Ruth Roberts of Aurora, a Reach to Recovery volunteer from the Batavia office.
“The doctor takes care of the medical aspects. We help heal the emotions and the self-image,” Roberts said. “We give them hope because we are the survivors. We’re their encouragers, guides, listeners.”
Like many of the volunteers, Roberts was helped by a Reach to Recovery volunteer when she had surgery. “That was before exercise videos, so she showed me to how strengthen my muscles on the surgery side,” Roberts recalled. “I remember how nice it was to see someone who had surgery, yet looked great and had such a wonderful outlook.”
The program matches volunteers by age and type of surgery. “A 29-year-old mother has different concerns than an older woman,” Roberts explained. “One woman may have a lumpectomy and radiation therapy. Another may have a modified radical mastectomy. Every case is so different and involves different issues.”
Unlike some other types of cancer, breast cancer has a complex effect on a woman’s relationship with her partner, Libby said.
“If your ovary is removed, no one can see it,” she said. “But losing a breast is different, because it affects your marriage and how you feel about yourself. I see marriages strained when the wife can’t talk about it. But the more conversation, the healthier. Let (your husband) help you, I tell the wives. It’s not a strike against you to be vulnerable.”
Husbands aren’t the only family members affected, Libby said. Some patients must deal with older family members who urge them not to tell anyone they have cancer. Others, including Ellie, watch their children react to what Ellie calls “the big wakeup call.”
Like many women, Ellie was the family caregiver. “Before the cancer, I was never sick, I was always available,” Ellie said. “So the diagnosis made my kids realize I won’t be here forever.”
More than once, Libby’s patients’ husbands have asked to talk to her husband, Bruce, and he obliges them. Usually, Libby said, the result (of having cancer) is strengthened family ties. “Families grow closer and appreciate their time together,” she said. “I know I don’t let the little things bother me anymore. Every day is important.”
Volunteers get gratification from helping others through what they refer to as “the war.”
“I always get more from the patient than she gets from me,” Roberts said. “I’m involved in a lot of other non-profit work too. But this is the last one I’d give up. Anyone can do the other things, but only a breast cancer survivor can be a Reach to Recovery volunteer. No one can empathize like someone who has been through it.”
Although most of the patient-volunteer relationships last a few months, the volunteers remain on call for their former patients. Some become friends.
“As the years go by, the mental trauma gets less and less, although you heal fairly quickly physically,” Libby said. “But it never ends. Years later, on a day when you don’t feel well, you wonder if the cancer is back.”
The best way to cope with life after cancer, Roberts said, “is to adopt a get-well attitude. When we help women reach this, then we make a significant difference.”
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For more information, contact the American Cancer Society in Batavia, 630-879-9009, or in Glen Ellyn, 630-469-3011.
