She is taught early on to search for something that she doesn’t want to find: an uninvited guest lurking within. From the point when she finds a lump, her fear is real and sometimes immobilizing. When breast cancer is diagnosed, it’s as if her body — her womanhood — has turned against her.
According to the American Cancer Society, this year alone approximately 178,480 women in the United States will discover that they have invasive breast cancer. Currently, more than 2 million women living in the United States have been treated for breast cancer, and one in eight women is at risk of getting the cancer.
University of North Carolina doctoral student Amy Bigbee never planned on working with breast cancer patients, but by chance, her internship brought her to the pastoral care program at the Moses Cone Regional Cancer Center in Greensboro. The encounters she had while working there altered the course of her life. At the American Counseling Association Convention in Detroit in March, she shared her experiences and suggestions in the session “Pink Ribbons: How to Use Group Therapy in Working With Women Who Have Breast Cancer.”
“I was moved every time I went to the group,” Bigbee says. “My life was changed because of those women. They faced death, and I learned to live. Personally, I learned what’s important in my life. Professionally, it was hard. The emotional drain … counseling any group is emotionally hard, but working with people who are facing death can be really heavy. Having to process that can be hard, but at the same time, it’s the most rewarding, to work with people who so courageously face death.”
Bigbee has found the supportive/expressive group therapy approach developed by David Spiegel to be the most beneficial model for her patients. She adds that the model has supporting research going back more than 30 years. “It’s you using what you already know about group therapy but applying it to a different population,” she says.
The Spiegel model suggests 90-minute unstructured sessions, with the leader having a basic knowledge of oncology, including the different types of breast cancer, stages of breast cancer, drugs, treatments, side effects and symptoms. “If you are going to work with women with breast cancer, the American Cancer Society website (www.cancer.org) will become your best friend,” she says. “I used it a lot to get basic information.” She points out, however, that she ended up learning the most from the women themselves.
Before working with women who have breast cancer, Bigbee suggests evaluating different options for times and locations of group meetings. “These women didn’t want to go back to the cancer center at night after they repeatedly go there for treatment,” she explains. “So that might be something you want to consider — the location and time. What might be convenient for the counselor might not be the most convenient for the women.”
Another reality is that these women are dealing with serious health issues, she says, so their attendance may be irregular. Similarly, the unpredictability and uncertainty of their cancer defies establishing hard rules for therapy. “There isn’t a blanket approach,” Bigbee says. “Each woman’s journey with breast cancer is different. A lot of times the group’s focus will depend on what they are going through week to week.”
The one certainty, however, is the need for mental health services in this area. Bigbee says research has shown that the Spiegel model is effective with this population. The women who participate have a higher rate of survival because, in general, they actively take part in and adhere to their medical treatment. Furthermore, group members have reported decreased levels of distress and a greater acceptance of life and death. Bigbee also points out research has shown that the benefit of mind-body wellness has ultimately lowered the health care costs of participants in this model of group therapy.
Although there are specific goals for the use of supportive/expressive group therapy with women who have breast cancer, Bigbee advises that group leaders not try to meet a particular goal or set a particular topic for each session. Leaders should help facilitate and guide the discussion, she says, but the group should remain unstructured.
Some of the group goals, such as social and emotional support, will be achieved through discussions that arise more naturally, Bigbee says. But the group leader may have to take a more active role in prompting certain topics, such as reordering life and facing death. Bigbee highlighted the following goals of supportive/expressive group therapy in her presentation.
“These women want to know that they aren’t alone. They can go (to group) and have these 90 minutes to be understood,” Bigbee says. Being with other women going through the same struggles provides group members a sense of normalcy and a safe place to share their emotions. However, Bigbee says, taking the first step and attending a group session can be very difficult because it’s the ultimate acceptance of the diagnosis.
Group members are encouraged to attend sessions even after their recovery as a way of giving back and inspiring hope in those who continue to fight the disease. “The women need to see someone who has gone through this and beat it. We had some women who had been cancer-free for 10 years, yet they still wanted to come back,” she says. Additionally, some members attend because even though they’re “cured,” they still live with the painful memories and the knowledge that the cancer may return.
The group is a sanctuary where members are free to express any emotion, whether that be fear, anger or confusion. They don’t have to hide their pain or put on a front like many do in their day-to-day lives. In addition, the group offers them a supportive place to ask questions about body image and sexual concerns. The women face losing a part of themselves related to their sexual identity, and being with others struggling through the process can be comforting.
Most important, Bigbee says, is that the group provides the women with both the time and tools to process death and dying. “Death is an extremely hard topic. I found that it wouldn’t be brought up unless I, as the counselor, would bring it up. Nobody wants to talk about it, but it’s alive and real when you hear the word cancer,” she says. “Even with women who had a really good prognosis, this is still an issue that needs to be talked about.”
Many of the women felt they couldn’t talk about death with anyone else outside the group, Bigbee notes. “As (group) leaders, we have to be comfortable ourselves with the idea of death and dying,” she says. “Unless I was comfortable with my own mortality, I couldn’t help anyone process their own death. If you are really thinking about working with this population, these are the ideas you have to consider. You have to be prepared as a leader.”
Group leaders should help members reorganize and prioritize what really matters to them now. It’s a time for group members to define what’s important and gain new perspective. They still have the demands of jobs, friends and family, Bigbee points out, yet they’ve also changed because of the experience they’re going through. Counselors can guide them as they re-evaluate their obligations.
“Life doesn’t stop when you get cancer,” Bigbee says. “It just keeps marching on.” This is particularly hard for women who have children and are fighting to maintain the “soccer mom” pace, she says. While the stresses on family life during this time can be tremendous — Bigbee has worked with women whose marriages failed in the middle of their treatment — this is the time for breast cancer patients to learn (and accept) what family support is there for them, she says.
Although many agree that their families should also seek mental health support, most of the women in Bigbee’s group were adamant that they did not want family members to attend their group sessions. “They need this time to themselves,” Bigbee says. “I’ve heard so many women say that they have to pretend that everything is OK. They have this pressure of constantly being ‘on,’ but once a week, they can let their guard down and be as vulnerable as they feel.”
Communication with medical staff
The group empowers the women to act as their own advocates. They learn from those further along in treatment how to talk with their doctors, what questions to ask and what options they have.
“Talking to the doctor can be intimidating,” Bigbee points out. “(But group members) learn to speak up for the treatment and cure they want. Many women choose not to have chemotherapy treatments. They need to make their own decision, and that’s OK. It’s critical for women to understand that they can ask questions and get the explications they need.”
It’s also important for group leaders to be familiar with the facility where the women are receiving treatment. Counselors should attempt to form a relationship with staff members at the facility. Bigbee feels fortunate to have worked at a cancer center where the medical staff was very supportive of her work. The oncologists routinely referred patients to her and kept her up-to-date on patients’ medical prognosis. If a member got a bad lab result back, she was aware of that and could ask about it in group.
The thought of undergoing chemotherapy — the nausea, the fatigue, the muscle pain — can be almost as scary as the cancer itself for many patients. Bigbee’s group allowed women to share their “home remedies” and coping tools for dealing with treatment cycles.
“One woman swore by eating a peanut butter sandwich before chemo. She said she would never get sick,” Bigbee says. “But there were women who didn’t know they could ask for medication to help with the side effects of the treatments. This is something they’re encouraged to talk about.”
Group frequency and makeup
Bigbee suggests that groups meet weekly rather than monthly. Many women who have participated in group therapy agree that more frequent meetings are beneficial.
“One of the things I was so angry about was that because I had breast cancer, I could only go to group once a month, but if I was an alcoholic, I could go to a group once a day,” says breast cancer survivor Montse Casado-Kehoe, an assistant professor and play therapy certificate coordinator at the University of Central Florida. “It was very hard for me to understand. They treat the body but don’t treat the mind.”
When Casado-Kehoe was initially diagnosed with breast cancer, she asked her doctor about attending a support group. The reply shocked her — her cancer had been caught early and her prognosis was good, so she didn’t need a group, according to the doctor.
Bigbee sympathizes with Casado-Kehoe’s experience. She explains that some medical staffs want to separate primary breast cancer patients from those with metastatic (advanced) breast cancer, perhaps fearing those with a good prognosis will “overreact” and think the worst of their situation.
This prompts a question: Should women with advanced stages of breast cancer be in one group, while those with less severe prognoses participate in another? Several of the breast cancer survivors who attended Bigbee’s session said stage doesn’t matter. They can all learn and support one another; they all have breast cancer, and that’s what bonds them. “There are some who are worse off than me, some who are better off than me, but we all share the same fears,” Casado-Kehoe says.
Furthermore, many of the women do not want doctors, nurses or other experts invited to join in on the group discussions, according to Bigbee. She says these women attend the groups mainly for peer support, not to listen to lectures or seminars.
Bigbee encourages women with breast cancer to journal, letting that serve as a kind of “friend” and companion in between group sessions. She also thinks letter writing can be extremely powerful for this population. She told the story of a woman who had lost one breast and was advised to remove the other after being genetically tested.
“She said, ‘I know I need to have the breast removed. It’s the smart thing to do, but I don’t want to lose it.’ So she wrote a letter to her breast to say goodbye. She sat down and constructed a five-page letter. It was the most amazing thing, what came out in her letter writing. The idea of betrayal — ‘I’ve already lost your sister, and now you are leaving me too! What are men going to think of me? I’m never going to feel the same way.’”
Women have addressed letters to their breasts, their bodies in general or even to the cancer, Bigbee says. “What rich information you are going to find within those letters,” she adds. “Those sessions were my favorite because of the honesty.”
Mask making is another highly recommended activity. Women create and decorate the outside of the mask to reflect how they believe others see them. The designs on the inside of the mask are meant to reflect the fears, dreams or feelings they are afraid to show to those around them. Bigbee says group leaders might consider seeking out local artists to come help with supplies and ideas for the creative outlet, which can be very powerful. Mask making is a lengthier process, not a one-night activity, she advises. The same ideas can be expressed more simply, however, using both sides of a sheet of paper.
Other suggested activities leaders can present to the group to inspire dialogue:
- Guided imagery
- Control activities (listing the things they can control and those they cannot)
- Labyrinth walking (a mazelike walkway that forces the person to focus on what is directly in front of them instead of thinking too far ahead; Bigbee says it symbolizes the journey inward)
- Adapted life review (writing about their past, present and future)
From personal experience
Vivian Lee, a higher education school counselor specialist with the National Office of School Counselor Advocacy, attended Bigbee’s session both as a counselor and a survivor of breast cancer.
Lee discovered a small lump in her breast in 2001, but it was found to be calcified tissue and not cancer. “Because of the fact that I had something, when I went to the doctor, I routinely got the kinds of test that women don’t normally get when they go for a checkup or routine mammogram,” she says. “Every time I went, I got an ultrasound. That saved my life. It was only on that test and not the mammogram that the cancer was detected four years later. If I had only had mammograms, by the time it was big enough to be detected, my prognosis would have been very different.”
Lee’s cancer was detected very early, so she didn’t have to undergo chemotherapy. Instead, she had a lumpectomy and radiation in addition to a regimen of medications for the next five years. “It’s important that women know that there are other tests that can be done that are more definitive than mammography,” she says, noting that tests such as MRIs and ultrasounds aren’t normally given because of cost and medical insurance restrictions. “Even though I spent from 2001 to 2005 worried sick, the tests I had, I believe, saved my life.”
Lee had surgery in 2005. Though her initial prognosis was good, there were complications because the cancerous tumor lay on her chest wall, so the lumpectomy caused some muscle damage. Scheduled to begin radiation, the treatment had to be postponed because she had lost significant mobility in her arm and couldn’t hold it above her head during treatment. “I developed severe scar tissue, fluid and swelling, so I had to do physical therapy and have this deep tissue massage that was excruciatingly painful,” she says. Lee went in for therapy three times a week until she was able to hold the position long enough to receive radiation treatment.
Lee also continued to go to work throughout the grueling schedule of physical therapy and radiation treatments, commuting from her home in Maryland to Washington, D.C. “Honestly, I don’t know how I did it,” she says. “I just wanted to maintain life as normal as possible. If you stop, it’s like it’s got you. It’s almost like you’re trying to outrun cancer. You try to find control and maintain life the best way you know how.”
Lee says one of the more poignant moments for her during her battle with breast cancer came when a colleague asked her how she was dealing with the fear. “I looked at her and said that she was the first person who had put it that straight, direct and clear. I so appreciated her question,” Lee recalls. “We don’t talk about the fear, but you’re terrified the whole time you are going through it. That’s the harder conversation to have. That and am I going to die?
“In counselor training, we don’t talk about that a lot. We don’t talk about that in society or polite conversation, but when you are faced with the diagnosis of cancer, that’s in your mind. As counselors, those are areas we need to talk about if we are going to work with cancer patients.”
A family affair
Lee certainly wasn’t a stranger to breast cancer. She has calculated that approximately 75 percent of the women on the maternal side of her family have dealt with something ranging from breast abnormalities to a full-blown diagnosis. In her grandmother’s generation, three out of five sisters were diagnosed with breast cancer. In her mother’s generation, two sisters died because of it. Lee and one of her two sisters has also been diagnosed with breast cancer. Several other family members have experienced cysts and fibroids.
“I’m the youngest diagnosed,” she says. “That was hard on my family, but they were very supportive because they had gone through it — three generations.” Many of her family members never fathomed that Lee would be diagnosed — she is an avid vegetarian, physically fit and active. “They were really shocked,” Lee says. “That’s why, from a counselor’s perspective, looking at family systems is so important to me. I can’t ever remember a time that I didn’t know about breast cancer. It’s always been a part of my life. That’s crucially important. We have to understand the disease as a systemic family systems approach. They are the ones with us every day. It’s not just the patient; the whole family gets cancer, and we really must consider and understand the needs of the family.”
Hope for the future
Today, Lee is cancer-free. Her doctors are very optimistic that she will not have another occurrence, but she admits a lot of unknowns still exist. “The only certainty is the uncertainty,” she says. “You live, love and laugh the very best you can.”
Lee still takes preventative medication and must continue strength training for her arm. Last year, she participated in the Susan G. Komen Race for the Cure. At the end of the race, her husband, Courtland, took a photo of her crossing the finish line. “I look at that picture and think, ‘My arm is in the air! I can keep it up there now!’” Lee says. She is currently considering participating in a 60-mile walk in October.
Lee was very excited to see Bigbee’s session at the ACA Convention and, from her perspective as both a counselor and a breast cancer survivor, thought she did a great job. “It’s long overdue,” she says of the session on counseling breast cancer patients. “There were things that Amy Bigbee did that, as a survivor, I really appreciated. She was very honest and upfront about how she didn’t have any background in this. She isn’t a cancer survivor, no one in her family has had it, but she was really open to learning. That felt very good to me, her openness. She made it a very safe and comfortable environment for discussion that meant a lot.
“I had just come from (keynote speaker) Linda Ellerbee’s session where she talked about her journey with breast cancer, and we had just heard about Elizabeth Edwards’ press conference. It’s very real and out there. The counseling needs are real. Amy was very brave, and I was grateful that she did the session. Hopefully this will spur more attention to this area of counseling.”