Occupational therapist Lucy Aguirre-Kelly describes a scene familiar to her audience of breast cancer survivors: YouÕre in a hospital bed, clad in the standard-issue gown, weak, hooked up to monitors.
When your family sees you, does anyone want to touch you?
Why not?
ÒTheyÕre afraid of hurting you,Ó suggests one woman. ÒTheyÕre afraid of their own mortality,Ó says another.
ÒWe try to incorporate families into relaxation techniques,Ó Kelly-Aguirre says. ÒOur job is to remind them their touch is extremely powerful.Ó
Aguirre-Kelly and Regina McCarthy are at the New Beginnings support group at Baylor Medical-Sammons Cancer Center to talk about the healing power of touch. The 10 or so women gathered join in some visualization exercises, ask questions and listen.
Support groups such as these, sponsored by numerous hospitals or the American Cancer Society, are a common way that women with breast cancer cope with the disease and its aftermath. Increasingly, women and their advocates in the medical community are recognizing that healing doesnÕt end with caring for the physical self.
ÒIllness separates the physical self from the spiritual being,Ó says Kelly-Aguirre. ÒWe look at the person as a whole person. We look at roles a lot: mother, wife, worker, and deal with those.Ó
A COMMON LANGUAGE
In visiting the New Beginnings group, itÕs easy to see the camaraderie and simple understanding that brings these women together. TheyÕve been there. They know the fears; they get the jokes.
The non-staff facilitators for this group are Lynne Lofgren, diagnosed 15 years ago and Barbara Depriest, diagnosed 10 years ago. In addition to their work with New Beginnings, both women volunteer at Baylor to work with newly diagnosed breast cancer patients.
ÒIt gives them a little hope,Ó Depriest says. ÒThey ask how long IÕve had it.
ÒWe speak the same language.Ó
Both women say they volunteer because they received so much support from Baylor staff and volunteers at the time of their diagnosis. They want to help in the way they were helped.
ÒYou feel closer to women who have gone through it and understand your feelings,Ó Lofgren says. ÒFriends and family are not as comfortable. They want to fix it.
ÒHere, you can say whatever you want and it doesnÕt leave the room.Ó
SOURCES OF SUPPORT
Breast cancer survivor Joni Pactor, a social work in oncology with Medical City Hospital, also speaks of Òthe common thread of having been there,Ó as well as the educational component of staying informed of the latest research and information about breast cancer.
Untrue stereotypes do exist about the groups, she says.
ÒThere are times when touchy subjects come up,Ó she says. ÒBut it can be very positive: a lot of laughing, a lot of sharing. ItÕs not just a lot of crying, as some people think.
ÒIt kind of reaffirms that people can and still do go on and do things. It doesnÕt have to immobilize you,Ó she says. ÒIt shows there can be a future. Sometime when youÕre going through it, you donÕt think that.Ó
Pam Jensen, a licensed counselor who leads breast cancer support group and a group for families at Presbyterian Hospital, says she tries to tell women hesitant to get involved in a group what itÕs really about.
ÒThey think you have to go in and spill your guts, and they are private people who do not want to do that,Ó she says. ÒThis is not like a psychotherapy group where you may be pushed to talk to reach a breakthrough. We donÕt push.
She describes one participant as an Òan incredibly shy person who said nothing at first.Ó
ÒShe is still not the kind of person to talk a great deal, but she talks about what she needs to, and learns from the others.Ó
Jensen says the benefits of an effective support group are to decrease isolation, give opportunities to express feelings honestly, to share information, to foster hope and to provide real-life role models.
ÒWith many role models you see them after the fact, after they have to their life all together and it looks great,Ó Jensen says. ÒItÕs almost like a role model that is too hard to live up to. Here, there are real-life models for women coping with this illness.Ó
The women also have seen patients thrive by depending on other resources: faith and church community; time with family and friends; meditation or relaxation techniques; one-on-one counseling; research through books or the Internet.
ÒFind out what your resources are,Ó Jensen says. ÒStay involved in life. Cancer patients do best when they stay involved in normal things they enjoy.
ÒThat may mean banking your energy for certain activities, like attending your childÕs soccer game. Put whatÕs important to you first.Ó
A SURVIVORÕS STORY
East Dallas resident Elizabeth Woodruff. was 59 when a mammogram detected tumors in both breasts. Only a year earlier, her son, a college senior, had died because of a brain tumor.
Woodruff underwent a bilateral mastectomy (the removal of both breasts) less than a month after her diagnosis. The prognosis was good. No further treatment was needed.
Woodruff, who was between doctors at the time she went in for a mammogram, decided to do so because of a Susan G. Komen ad she saw on television.
ÒI owe a lot of my success to that ad,Ó she says, adding later that after her experience Òall my friends ran out and got mammograms.Ó
Woodruff describes Stiles, her husband, as Òextremely supportive.Ó Encouragement from him and other family members and friends made a difference.
ÒA crisis either brings you together or drives you apart,Ó Woodruff says. ÒWhen I was in the hospital, I saw younger women having the same surgery whose husbands were not supportive. I thought that was very sad.Ó
Her religious faith and a positive outlook also helped her through. And she stayed involved in the family business of representing growers.
ÒYou have to keep your mind active and not dwell on yourself so much,Ó Woodruff says. ÒOutlook is everything, I think.
ÒWe all have choices. Each problem you master makes you stronger for the other one.Ó
SEARCHING FOR ANSWERS
Dr. Marjorie Hatch, a Lakewood resident who is a clinical psychologist and instructor at Southern Methodist University, has completed one study at Baylor Medical Center related to support groups for women with breast cancer. She is conducting a separate study that uses psychological techniques in an effort to reduce nausea and vomiting among breast cancer patients undergoing high-dose chemotherapy treatment.
ÒAs a woman, IÕm interested in womenÕs health issues,Ó Hatch says. ÒBreast cancer is such a common form for women. I wanted to try to make life better for those dealing with it.Ó
In her first study, Hatch compared two support groups. The first was a traditional support group focused on sharing personal experiences. The alternative model group presented specific coping strategies such as relaxation yoga, meditation and therapeutic writing. The women in this group would practice the techniques during the meeting.
Hatch found little difference in the effectiveness of the two groups. ÒEveryone seemed to cope better at the end and indicated they enjoyed the group,Ó Hatch says. ÒThe take-home message would be to investigate and decide which type of group fits your needs.Ó
Women with breast cancer face all the issues anyone with a life-threatening illness, and some specific to their illness. Some of these include:
Sexual/social issues: The psychological or sexual consequences may be to feel less womanly. For younger women, the treatment may induce menopausal symptoms. These women must cope with no longer being able to have children.
Loss of work-related social support: Women may have to take time off from work, losing financial support and sense of competence as an employee. ÒYouÕre not an employee anymore,Ó Hatch says. YouÕre a patient.Ó
Existential: Issues of dying and mortality and in general must be faced. That includes practical matters and also spiritual issues. ÒItÕs a time to re-evaluate issues with your God,Ó Hatch says.
Financial: Paying for costly care, which Òmany people in my studies tell me is one more nightmare.Ó
These and other issues are put on the back burner when women are first diagnosed, Hatch says. Medical personnel focus entirely on determining appropriate treatment and moving quickly.
ÒThe medical issues are overwhelming,Ó Hatch says. ÒWhatever psychological and social issues they are dealing with are shunted to the side.
ÒIn some sense, there is an expectation that once the medical treatment is over, the woman should be fine. Most arenÕt.Ó
Baylor, for one, responds by offering support groups as well as one-on-one counseling with spiritual advisors. Responses to the groups vary, Hatch says.
ÒSome women with breast cancer really benefit tremendously from the groups,Ó she says. ÒThey feel those women are the only ones who truly understand them.
ÒOthers donÕt want to be involved with what they see as a group of women whining about their treatment, or about a time in their life they donÕt want to be reminded of.Ó
Hatch recommends learning what goes on at a specific group before deciding which one Ð if any Ð is right for you.
ÒSomeone may tell you, my friend was in this support group and it helped her so much. You should join,Ó Hatch says. ÒThatÕs something you must decide for yourself.Ó
Another coping technique that is more involved is to take on an advocacy role. The Susan G. Komen Foundation is one such advocacy network. The work may involve lobbying, fund-raising or being a spokesperson.
ÒThat involves a bigger scale than our own needs,Ó Hatch says. ÒThey have chosen to come to terms with it by helping other women.Ó
Breast cancer may lead to common experiences. But womenÕs responses are Òso individual,Ó Hatch says. Some people choose to identify themselves as cancer survivors; others wonÕt, saying that the illness happened and is over.
Hatch describes one extreme as believing that you havenÕt changed at all. The other is to not feel like your Òold selfÓ at all. Most women eventually make their way to comfortable ground.
ÒLife experiences change us,Ó she says. ÒYou canÕt take back what happened. You have to come to terms with it.Ó
The following is a list of some of the support groups available in our area:
Breast cancer support groups
Baylor Medical-Sammons Cancer Center
3500 Gaston Avenue
Meets: Third Tuesday, 11:30-1 p.m.
Contact: Kathy Thomas-Welch, 820-2608
Medical City Hospital
7777 Forest Lane
Meets: First Wednesday, 7-9 p.m.
Contact: Joni Pactor, 972-566-4997
Presbyterian Hospital
8200 Walnut Hill Lane
Meets: First and third Thursday, 5:30-7 p.m.
Contact: Pam Jenkins, 214-345-7355
Dialogue: An ongoing support group designed to help patients, their families and friends learn to live with cancer
Baylor Medical-Sammons Cancer Center
3500 Gaston Ave.
Meets: First Tuesday, 5:30 p.m.
Contact: Lisa Mindemann, 214-820-2608
Medical City Hospital
7777 Forest Lane
Meets: Second Monday, call for times
Contact: Adriana Marsh, 972-566-7790
Presbyterian Hospital
8200 Walnut Hill Lane
Meets: Second and fourth Thursday, 5:30-7 p.m.
Contact: Pam Jenkins, 214-345-7355
MATERIALS AND INFORMATION FOR BREAST CANCER PATIENTS
Breast Cancer Lighthouse
An intervactive CD-ROM developed for the American Cancer Society by Michigan State University. Using video and audio in an interactive format, the CD-ROM presents the stories of 14 breast cancer survivors to give the user an idea of what it is like to be diagnosed and treated for breast cancer. It also offers medical information about treatment options. Breast Cancer Lighthouse can be ordered through American Cancer Society divisions or by calling (800) 375-0943.
World Wide Web Clinical Trials Site
The National Cancer Institute and the National Alliance of Breast Cancer Organizations have launched an initiative to make information on clinical trials more available to patients. Brief summaries of 1,500 ongoing trials listed in the NCIÕs cancer database are available in lay language on the allianceÕs home page (http://www.nabco.org). The viewer has the option of connecting to NCIÕs clinical trial page if more information about a specific trial is needed.
Tender Loving Care
A catalog developed by the American Cancer Society that offers products to help a women with cancer feel more comfortable and look better. Merchandise includes customized bras and swimsuits designed to hold breast prostheses. Order by calling (800) 850-9445.
Source: American Cancer Society
National Breast Cancer Organizations
Susan G. Komen Breast Cancer Foundation
5005 LBJ Freeway, Suite 370
Dallas, TX 75240
(972) 855-1600
Internet address: www.breastcancerinfo.com
American Cancer Society
8900 Carpenter Freeway
Dallas TX 75247
(214) 631-3850
Internet address: Nationwide (www.cancer.org) Texas (www.acs-tx.org)
National Cancer Institute
Cancer Information Service
800-4-CANCER
Internet address: www.nci.nih.gov
National Alliance of Breast Cancer Organizations
9 E. 37th St., 10th floor
New York, NY 10016
(800) 719-9154
National Breast Cancer Coalition
1707 L Street, NW, Suite 1060
Washington, DC 20036
(202) 296-7477
Internet address: www.natlbcc.org
National Coalition for Cancer Survivorship
1010 Wayne Avenue 5th Floor, Suite 300
Silver Spring, MD 20910
888-937-6227
