A coordinated and consolidated effort to proactively put the counseling profession on more solid ground in the future has moved steadily forward in the last year. Delegates representing 29 different counseling associations and entities met yet again at the most recent American Counseling Association Convention in Detroit to discuss the progress being made on the initiative, known as 20/20: A Vision for the Future of Counseling.

Since getting the process started by holding counseling summits in 2006 at the American Association of State Counseling Boards Annual Conference and the ACA Convention, the delegates have chosen seven areas they believe need to be actively addressed to ensure the future health of the profession. Those areas are:

• Strengthening identity
• Presenting ourselves as one profession
• Improving public perception/recognition and advocating for professional issues
• Creating licensing portability
• Expanding and promoting the research base of professional counseling
• Focusing on students and prospective students
• Promoting client welfare and advocacy

In the past year, the delegates split into work groups and fashioned reports that recommended how to address each of the focus areas. First drafts of the reports were presented at the AASCB Annual Conference in Sarasota, Fla., in January; second drafts were discussed by the delegates at the ACA Convention in Detroit. In addition, an Education Session was held in Detroit so the 20/20 Oversight Committee could begin to better inform counseling professionals of the initiative.

While general feedback was solicited during the Education Session, the committee doesn’t want to present anything “official” to the public for comment until delegates have reached a 90 percent consensus on each concept, said ACA Chief Professional Officer David Kaplan. When the delegates develop an initial draft of a consensus document, the public will be given ample opportunity to provide feedback, he added.

While there was some hope the delegates would begin to reach consensus on concepts in Detroit, there is no set timetable for development of the consensus document. “This is a major initiative in the counseling profession,” Kaplan said. “This is an open process that involves all the major players in counseling. It’s not about glossing over specialties, regions and grassroots. Sensitivity is being paid to that. Doing this right is more important than arbitrary deadlines.”

At the same time, everyone involved with the 20/20 Vision effort agrees that the clock is ticking. If the counseling profession cannot come to grips with its core identity, then it risks becoming irrelevant. The ongoing struggle is how best to present counseling as a single, unified profession with many specialties.

“What we’re trying to do is unify the profession and have some core thread,” said AASCB Past President Charlie Gagnon at the Education Session on the 20/20 initiative in Detroit. “We don’t want to take away from the individuals in the field but instead give them a core identity with their specialty. … One of the issues we’re struggling with is defining what a counselor is.”

Sam Gladding, a past president of ACA who is serving as the facilitator for the 20/20 process, voiced similar sentiments about identifying a core for the counseling profession. “If we don’t take steps to define that, we’re not going to be very functional in the future, and we’re not going to have a very good public perception,” he said. “We need to define ourselves rather than having other groups define us. If we can agree what our identity is, it will also help us with our identity in the public eye.”

Another option, Kaplan pointed out, is to determine that each counseling specialty — mental health, school, career, rehabilitation and so on — actually constitutes its own unique profession. One of the main problems with that approach, he said, is that, acting alone, the counseling groups lose their power to influence legislation. “We want to unify our profession and present ourselves as a coherent group to outside groups,” Kaplan emphasized. “Otherwise, legislators ask, ‘Why don’t you have one group with one voice? Come back when you have your act together.’”

Finding that one voice has proved to be a difficult task for the counseling profession. As Gladding told the delegates convened in Detroit, “We have been stuck for years as a profession at ‘storming’ in the group process.”

The current process doesn’t promise smooth sailing either, but those involved in the 20/20 initiative appear committed for the long haul and to share an understanding of its importance. “We realize this isn’t going to be an easy process. We have 50 years of difficulty to overcome,” said 20/20 delegate J. Barry Mascari, president of AASCB and an assistant professor in the Kean University Counselor Education Department. “But despite a difficult task ahead, this initiative by our profession has gone farther than any effort to attempt this before now. While it may take longer than we would hope, I was pleased that delegates wanted the process to continue, recognizing that, while we may be currently talking about aspirations, we need to envision a different future. That future can only come through continued effort and dialogue as we move into heretofore uncharted waters. It is a pretty exciting process.”

License portability

The 20/20 initiative actually began as an outgrowth of AASCB’s license portability effort. After reviewing the multiple variations in state licensing titles and requirements, AASCB asked ACA to partner in an effort to standardize counselor licensure in the United States. AASCB said the lack of common standards not only hindered the goal of license portability, but was also fragmenting the profession.

As the presidential teams of the two associations met at the ACA Convention in Atlanta in 2005, the conversation began to encompass other key issues affecting the counseling profession. “Eventually we said, ‘Why don’t we go beyond that (license portability)? How can we position the profession of counseling proactively?’” Kaplan recalled. Those questions eventually seeded the 20/20 initiative.

Not coincidentally, license portability is one of the major focus areas of the 20/20 initiative. At the same time, AASCB continues to advance its portability plan and has established the National Credentials Registry. As described on the AASCB website (www.aascb.org), the National Credentials Registry is “a perpetual holding site for documents related to licensing and portability.”

Jan McMillan, a former AASCB president, is chairing the registry. Her committee has been visiting states to help them modify their regulations to accept license portability.

“Currently, there are 22 states in various stages of portability initiatives, with a few having completed their processes,” Mascari said. “It is a massive undertaking and challenging to get 48 states, (Washington) D.C. and Puerto Rico to move to portability when the nationwide standards have such wide variation.”

Mascari urged licensed professional counselors and other ACA members to contact their state counseling boards to obtain more information about where they stand in the process and to encourage them to either begin or continue working toward license portability.

As a nation, we have watched and grieved with Virginia Tech. We have been moved by the images of candlelight vigils, tears, flowers and balloons. We have worn the school colors and proudly declared, “We are all Hokies today!” And we have learned about the university’s motto, “ut prosim,” which is Latin for “that I may serve” — the essence of what the university community refers to as “Hokie spirit.”

Following that infamous Monday morning of April 16, when student gunman Seung-Hui Cho killed 32 people and wounded numerous others before committing suicide, Virginia Tech counselor educators Gerard Lawson and Nancy Bodenhorn, both American Counseling Association members, responded quickly, serving the university community wherever they saw a need. They served the students with comforting hugs. They served by being present with the victims’ families during the heart-wrenching notifications. They served their colleagues, offering them shoulders on which to cry.

Lawson and Bodenhorn were also key players in what has come to be known as the Mental Health Advisory Group, a collaborative panel that also includes representatives from the university’s Cook Counseling Center, the university psychology department, the New River Valley Community Services Board and the American Red Cross. The group met the day after the shooting to develop a strategy to provide mental health support to the entire Virginia Tech community. “Our (original) goal was really just how we get through the next 24 hours,” Lawson says, speaking of the immediate aftermath of the event. A memorial convocation in honor of the victims was already being planned, and the Mental Health Advisory Group anticipated it would be very difficult for the entire community. “We felt strongly that there needed to be a mental health presence at the convocation,” Lawson says.

It was decided that most of the counseling work done by community volunteers and American Red Cross volunteers would be supportive in nature, Lawson says. Individuals in need of further counseling would be referred to the Cook Counseling Center. Wearing badges and purple armbands, mental health professionals passed out fliers describing what people might experience in the days following the tragic event. As Lawson explains, the mental health professionals approached the situation from a standpoint of prevention and simply tried to communicate that counseling services were available to anyone who needed them.

The Virginia Tech administration canceled classes the rest of the week, and many of the students went home to be with their families. But in preparation for their return, the Mental Health Advisory Group made calls for additional mental health support. The New River Valley Community Services Board organized a quick refresher course on brief trauma counseling for the volunteers. When classes resumed on Monday, April 23, more than 200 mental health volunteers were walking the halls and campus grounds, consoling students and watching for anyone showing signs of extreme emotional distress. Lawson made certain that mental health teams were in each of the classes that had lost a student as well as in each of Cho’s former classes.

“I was very clear with all the mental health teams that I wanted them to use language similar to this: Anything you want or need in support of your recovery we will try to help you with,” Lawson says. “I didn’t want anybody to think, ‘I have to be sicker than that kid in order to go get counseling.’ I wanted them all to know that anything they wanted, they could ask for. The door was open even if they just needed to come and say they were still so angry about this or they were still scared.”

Lawson was shocked to hear counselors in two of Cho’s classes report that students hadn’t even known he was part of their class. But in other classrooms, students struggled with feelings of guilt because they hadn’t picked up on Cho’s strange behaviors. Many students were questioning themselves and wondering if they could have done something to prevent the tragedy.

Many people were still scared to return to campus on the Monday following the shootings; on Tuesday, the grief really began setting in. “That is something that we should have predicted but didn’t,” Lawson says. “At the end of Monday, we thought that the day (had gone) better than expected.” But the team hadn’t realized that many of the students were simply dealing with the anxiety of trying to get back to their normal routine. Once their initial anxiety wore off, much stronger feelings — fear, anger, grief — began to surface.

In addition to being in classrooms and dorms, counselors also made their presence known in the dining facility. Lawson received reports that many of the students in the dining facility were withdrawn and not making eye contact with the counselors. He decided that perhaps the cafeteria needed to be a place where students could go to get away from reminders of what had happened. He told the mental health team not to go back there the following day. However, soon thereafter, he received a call from the manager of the dining facility saying his employees were having a difficult time controlling their emotions after seeing so many upset students.

“The staff members who were serving lunch and taking the students’ money didn’t know what to say or what to do, so they were crying. It was just a very different experience on the second day of class,” Lawson says. He sent employee assistance program counselors to the dining hall with some of the volunteers to work with both the staff and the students. Dining hall employees were coached in comforting and appropriate things they could say in their encounters with the students.

In the weeks since the shooting, Lawson has begun getting back to a normal routine himself. “The day or two after the shooting — and I took this right off the ACA website — I made sure I went to the gym. As hard as it was to drive away (from the campus), it was important for me to do it. I’ve been talking to people that I know and trust, and I’ve been really selective about what I’m able or willing to take in with the news. There was nothing useful in the news after the first few days. They just wanted us to tell them how bad we are hurting.”

By throwing himself into the response efforts, Lawson says he was initially able to cope with the events. He knew, however, that eventually he needed to stop compartmentalizing and address his own self-care. “I went and saw one of the counselors, and that is probably going to continue for a while because something like this is life-changing, and I want it to be life-changing in a positive way, not a negative way.” He also hopes that in watching him, his students have witnessed a very practical example of the importance of counselor wellness as well as the need to be alert for warning signs of compassion fatigue.

A meaningful cheer

As part of the initial group of mental health responders, Bodenhorn quickly gathered informational materials on mental health and the services available to pass out to students. The director of the university’s Cook Counseling Center, Christopher Flynn, had been in his position less than a year, Bodenhorn says, but was very familiar with trauma response. Flynn was at Loyola University in New Orleans during the Hurricane Katrina crisis.

“He had all of this background, which was of great benefit to us,” Bodenhorn says. “He was very clear in the planning meetings that the way we were going to go forward with this was not with the assumption that everybody is going to fall apart and need critical care. How people are going to respond to this was going to be an ongoing process.” Grief, she adds, was treated as a normal reaction to an abnormal situation.

The memorial convocation held on April 17 was extremely emotional for those attending. President George W. Bush, Virginia Gov. Timothy Kaine and several distinguished guests from the university offered their condolences, prayers and encouragement. Perhaps the most inspiring message of hope came from renowned poet and Virginia Tech English professor Nikki Giovanni, who closed her address by saying, “We are the Hokies. We will prevail. We will prevail. We will prevail. We are Virginia Tech.”

“Whoever managed the convocation was a genius from my perspective,” Bodenhorn says, taking a moment to collect herself. “I will always remember the statement, ‘You go where you get the most hugs.’ That was the directive to the students.” At the end of the convocation, students with tear-streaked faces belted out the Hokie cheer. At first, Bodenhorn says she was appalled, but then the spirit and emotion behind the cheer grew to feel right.

“Afterward, I went back into the coliseum. There were about five people who had not moved from their chairs, so those are the ones I went and checked in with. Every one of them just wanted a little time to get a grip on the overwhelmingness of it. The last student I talked to knew five of the victims. He expressed to me that each of those five students who died would have wanted the cheer. It was like the convocation was for the rest of us, but the cheer was for them. That made sense to me and really helped me.”

She added that many people also appreciated the memorial message boards that were put up around campus so the university community could write to the deceased. “There was a great outpouring,” Bodenhorn says, “and it was a great avenue for students, faculty and the community to just write messages. I remember one that was to Ryan Clark, one of the resident assistants. It said, ‘Ryan, thank you for keeping my son safe.’ And there were some (messages) directly to Cho, about recognizing the pain he must have felt in his life.”

An avid tennis player, Bodenhorn is trying to maintain her tennis schedule and taking time out to care for herself after providing care to others in the emotionally intense days after the school shootings. “Hitting things is very productive these days,” she says of her tennis schedule, “and I’ve seen a counselor. I’m reconnecting with people and friends in my past who I had lost touch with, and that’s been very helpful. It’s going to be a long process for all of us.”

Lending a hand

Sam Gladding, a former president of ACA, wrote to Lawson and Bodenhorn to offer his help soon after the magnitude of the event became apparent. Gladding, along with Donna Henderson and Laura Veach, his colleagues in the Wake Forest University Department of Counseling, arrived on the Virginia Tech campus the Monday morning that classes resumed to join a pool of mental health professionals and physicians volunteering to help the students, staff and faculty. Working in pairs, the mental health teams were respectful of how the professors wanted to address their returning students. The professors were told that the tragedy needed to be acknowledged and that students should be made aware of the mental health teams in class. Some professors wanted to get back to business, while others were speechless, saying they had no idea how to even start class again.

“There was a wide variance on how the professors wanted to use us,” Gladding says. “We were there talking generally to classes. We weren’t there to do long-term counseling but more like psychological first aid and let them know what services were available. We encountered and talked with students who knew those who had been killed or wounded, and we talked to students who were more on the periphery and did not know someone personally but still felt violated in the sense that their wonderful, tranquil institution had experienced this kind of violence. I think everyone was affected in some way.”

Gladding was very impressed with how well Virginia Tech planned its mental health response and recovery services. “The volunteers were utilized well,” he says. “Gerard and Nancy were right at the control center. They are heroes in my book. It’s probably some of the best implementation that I’ve ever seen, and I worked after 9/11 in New York. I just think Virginia Tech did it as well as anybody could and continues to do it as well as anybody can.” Gladding returned to the Virginia Tech campus to help support the mental health staff during the graduation ceremonies that took place in mid-May, roughly one month after the shootings took place.

Hindsight is 20/20

One issue that became very clear to university officials and emergency responders after the deadly school shootings was the lack of a centralized emergency response headquarters and plan at Virginia Tech. “The (American) Red Cross has a very clear protocol on how things are supposed to run in an emergency, but one of the problems we had as a university is that we are so decentralized,” Lawson says. “When an emergency happens, you need some centralization.” Issues arose when the American Red Cross arrived at the scene and began asking who was responsible for certain populations on campus. The university supplied multiple answers, depending on whether the population in questions involved students, staff or faculty.

“There needs to be a much clearer idea of who is going to do what in an emergency situation like this,” Lawson says. “There needs to be a mechanism that says when these things happen, this is how the process needs to work. But the one thing that worked well was the fact that there wasn’t any turf issues. Everybody showed up and said, ‘How can I be useful?’”

Almost immediately after the gunman was identified, the media and many other people began scrutinizing Cho’s past mental health history, searching for “red flags” that were missed in hopes of explaining how the deadly incident had occurred. Lawson doesn’t believe a simple answer exists, nor does he think a single agency or person is to blame.

“I don’t think all the people involved had all the right pieces at the right time,” he says. “The red flag question is one that keeps coming up, and after the fact, it’s easier to see. It’s hindsight.” At one time, Cho was detained temporarily at a mental health facility but was released after a judge ordered him to seek outpatient treatment. Newspapers such as the Washington Post have reported that Cho never received the court-ordered treatment, raising questions about the state’s mental health system.

“I’m not sure that anyone in the moment could have said these are the things that we could force this person to do,” Lawson says. “Most of my clinical experience has been working with people in the court system, and there are a lot of scary people who come to counseling just to sit in that chair because someone makes them go. Honestly, if we want to use hindsight, we need to look back 20 years and try to figure out along the way where the system failed to support this kid and his family. Were there opportunities along the way that we can learn from in the future? It’s not a popular thing to say these days, but I think in many ways the shooter was as much a victim as everyone else.”

Adds Gladding, “I don’t think you can make someone either seek counseling or benefit from counseling. Trying to force mental health and commitment are not an easy task, and people can find themselves released if they appear not too dangerous to others or themselves. There are people who are very good actors. I’m not sure about the blame part from all I’ve heard. People sincerely tried to get him help. It’s much easier to speculate when you are not there in the moment.”

Gov. Kaine has appointed an eight-member commission, headed by retired State Police Superintendent W. Gerald Massengill, to investigate the details surrounding Cho and how the events unfolded. The first public meeting convened May 10. Additional meetings are scheduled, and reports are to be completed by the fall.

The review panel will study the response of state, university and local agencies to the tragedy, including medical care for those who were injured, medical examination of those killed, counseling for university students and employees, and services for victims’ families. The university is cooperating with the review panel and is conducting its own reviews of safety, telecommunications and information-exchange protocols.

Today, employee assistance program counselors remain vigilant for the Virginia Tech staff and faculty who remain on campus, and the local community services board has agreed to provide additional student assistance. ACA member Charlotte Amenkhienan, a licensed professional counselor with the university’s Cook Counseling Center, says the facility will remain open over the summer. It will continue to serve students affected by the events, including those who just graduated and students who aren’t currently enrolled in classes but remain in the area. The counseling center will also be working over the summer to review its internal procedures, Amenkhienan says. Additionally, Lawson is working with ACA in hopes of providing pro bono counseling services to those Virginia Tech students who have left campus and the surrounding area.

Looking forward

Many described the recent graduation ceremonies at Virginia Tech as bittersweet. It was a time filled with the celebration of accomplishments and the hope of new beginnings, but also sorrow at the reminder of lives lost. During graduation on May 11, the university president presented the families of the deceased with class rings. The following day, the deceased students were awarded diplomas posthumously at individual college and departmental convocations. Lawson described the memorial portions of the ceremonies as generous and thoughtful, but realizes it had to be difficult for the parents of the deceased to watch as hundreds of other students walked across the stage to receive their diplomas. There was no mention of the gunman at the graduation ceremonies.

Despite witnessing the immediate aftermath of a horrible event that will live in history, Lawson is already looking toward the future. “We aren’t going to squander the goodwill that people have extended to us. We have felt it, and it’s been palpable on campus, the support from all over,” Lawson says. “That’s going to help us as we move forward. At the end of the day, the students, alumni, faculty and staff at the university are going to take charge of how we want to be remembered. It’s not going to be how we were portrayed on the (TV news) networks during our darkest hours. When people look back, they are going to see what it really means to be a Hokie. We will not be defined by this tragedy.”

Hokie Spirit Memorial Fund To remember and honor the victims of the tragic events of April 16, Virginia Tech University has established the Hokie Spirit Memorial Fund to aid in the healing process. The fund will be used to cover expenses including but not limited to: Assistance to victims and their families Grief counseling Memorials Communication expenses Comfort expenses Checks should be made out to Virginia Tech Foundation Inc., with the gift designated for the Hokie Spirit Memorial Fund on the memo line. Send checks to: Hokie Spirit Memorial Fund, University Development (0336), Virginia Tech, Blacksburg, VA 24061. For more information, call 800.533.1144 or go to www.vt.edu/fund/.

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.

Group goals

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.

Social support

“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.

Emotional support

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.”

Reordering life

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.

Family support

“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.

Symptom control

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.

Group activities

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.”