Patients Helping Patients Blog
Patient Profiles: Breast Cancer Part II
In the first part of of this three-part series, you were introduced to Betty, her daughter, Liz, Shannon, Tina, and Diana. You learned that women who are diagnosed with breast cancer are not really all that surprised to get a diagnosis. They are often expecting it. Having breasts is a risk factor, and women have breasts. In today’s installment, you’ll meet Meredith. She wasn’t expecting to get breast cancer. But, before we meet her, we’ll pick up where we left off in part one: the matter of hair loss and chemotherapy.
Whether or not a survivor lost her hair during cancer treatment, it’s one of the first things she says about her experience. Shannon even lost her eyelashes and they never came back. She says she knows it’s a little thing, but it still bothers her. Betty, didn’t lose her hair. Like a growing number of women, she did not have to have chemotherapy. She says avoiding chemo made a huge difference in her experience. At the time, Betty was receiving treatment at a research hospital, and there was a test available to her that would determine how beneficial chemotherapy would be in treating her cancer. She was told that if she scored between a one and a 19, she would not need chemotherapy. Betty scored an 18. While she had to pay for the costly test out of pocket and wait for insurance to reimburse her, she says it was worth it. “It was so helpful,” she says. “Because of what chemo does to your body, you don’t want it unless you need it.” Side effects from chemotherapy can include anemia, diarrhea, fatigue, fertility issues, hair changes/loss, memory loss, neuropathy, menopause and menopausal symptoms, mouth and throat sores, nausea, vaginal dryness, vomiting, bone loss/osteoporosis, heart problems, and vision problems. The test Betty had is now being more widely used and, as you may have read on the Patient Empowerment Network blog in the June Notable News here, researchers have learned that 70 percent of women don’t need chemotherapy when they have the most common type of early-stage breast cancer, with low and moderate risk of recurrence. The test looks at cells from a tumor biopsy to determine what is known as a patient’s recurrence score. Patients are scored between zero and 100, with zero being the lowest risk of recurrence. Researchers now know that women who score less than 25 do not necessarily need chemotherapy.
Betty also did not need to have a mastectomy. She had a lumpectomy followed by intraoperative radiation therapy, a 30-minute procedure that involves surgically placing a ball of radiation in the spot where the tumor had been. The procedure meant that Betty only had to have a single radiation treatment, and it helps reduce the side effects of radiation. Betty was eligible for that form of radiation in part because of the size of her breasts. She says she told the doctor, “I’ve been lugging around these big things my entire life and they are finally paying off.”
The intraoperative radiation was another benefit of being at a research hospital. At the time of Betty’s treatment, the procedure wasn’t being widely used and wasn’t available through her local doctors. Receiving treatment at a research hospital also made a difference in Diana’s care. She recalls going in to her local doctor’s office for her test results, and no one in the office would make eye contact with her. Then, when the doctor came in to see her, he told her she had breast cancer, that he wanted to treat it right away, that he’d see her next Tuesday, and then he left the room. Diana says she was left there shaking. “He has a heart, but he didn’t show it,” says Diana, who then went to a research hospital for a second opinion. Her new doctor was much better, she says, and adds that the shoulder of his lab coat was always dirty from the smudge of make up left behind after his patients hugged him.
The importance of good doctors that you are comfortable with seemed to be one of the critical components of care to all the women.They all talked about how much they liked and appreciated their doctors. “A really good physician realizes psychological and spiritual care are just as important,” says Tina, who sought the services of a psychologist after her treatment. She was struggling with anxiety and depression and found that the counseling really helped her to work through her emotions about having cancer, which emphasizes another, perhaps the largest, critical component of care during treatment: emotional and mental support and health. Diana says she found support online and emphasized the importance of staying positive through treatment. “Count your positives,” she says. “That is the key.” Along the same line, Betty says, “The number one thing is attitude.” Actually, she and Liz say “attitude” in unison, and Betty adds, “I think attitude is a big piece of it.” Meredith Cronin who was diagnosed at age 37, says “Attitude is everything.” Meredith, who had three children under the age of six when she was diagnosed, says she understands how easily you could get depressed as a cancer patient. “I always say that I felt blessed that I was young and so busy that I didn’t have time to be depressed.”
Shannon, who was accused of being negative because of her detailed planning to get breast cancer before she actually had breast cancer, says she wasn’t negative; she was realistic and it was that take on it and her preparation and planning that helped her maintain emotional balance.“It didn’t affect me emotionally as much as I think it would have,” she says. Shannon coped through research and attention to details, and she describes her experience in the kind of detail that makes you think she’d just had it done yesterday rather than three years ago. Betty used a different method of coping and says she’s been able to let a lot of the experience go. “I don’t dwell in that place,” she says. She and Liz also found a lot of humor in the experience. The clickity-clack of someone’s shoes, Betty’s preoccupation with cutting out recipes from a magazine, or the ridiculousness of what must have been an excruciating procedure, were all fodder for coping. It’s not that Betty doesn’t take cancer seriously, but she was better able to cope with the diagnosis by finding humor in the situation. “We laughed through our tears,” she says. Liz says that early on in the experience, they imagined the worst possible scenario, which made handling what really happened more doable. The ways of coping with cancer are as varied and vast as are the treatment options.
Next time, in Part III, recurrence.
Jennifer Lessinger has been a professional writer and editor in some form or another for twenty years. She learned about the importance of patient empowerment fifteen years ago when she became sick with what would later be diagnosed as an “unspecified” chronic illness.