RECEIVING LONG TERM CHEMOHTERAPY-ALOPECIA:
PATIENT VIEW

Prepared by Annette Werner on September 15, 2004

Sarah is a 66-year-old female with recurrent and metastatic breast cancer. Sarah is participating in a clinical research study whereby she receives telephone calls from an oncology nurse to assess symptom experience and assistance in developing coping skills related to these symptoms. Sarah's arsenal in fighting her cancer includes taxol and xeloda. Despite chemo, Sarah is very active - continuing to work as a home health aide, taking care of her husband and home, and remaining very connected in her grown daughter's and grandchildren's lives. One of the symptoms that is bothering Sarah is alopecia. Her regular intervention nurse in on vacation, so this nurse is assigned to call Sarah. In evaluating how Sarah has been coping with alopecia since the last phone call, I ask Sarah what hair loss means for her. She answers, "Well, I am 66 years old and no longer a beauty queen". This is her way of telling me that her alopecia affects her body image, despite her coping measures of utilizing make-up, hats and wigs. Knowing that Sarah's regular nurse has suggested that she share her feelings with her family, I then ask Sarah if she has anybody she can talk with about her feelings. Sarah's answer is very surprising - "Yes, I talked a little to my family, but that doesn't really help and in some ways it makes me feel worse". I prompt her for clarification and she explains, "My family says things like they love me just the same with or without hair, and that I look good with my wig on". "They also say, Don't worry, Mom, your hair will grow back like it did the last time" [meaning after chemo was finished with her original diagnosis]. This last statement is made with a soul-wrenching anguished quality to her voice - a voice which turns on a little voice in this nurse's soul and I begin to understand. With some more prompting, Sarah's feelings emerge - she has a satisfying life - she likes taking care of people and through this role she can almost forget about the breast cancer for snatches of time throughout her day - until she is brought up short by looking in a mirror. The alopecia signifies that her very survival is now dependent upon her continued response to chemotherapy. Sarah does not like having alopecia, but she cannot anticipate an end to the chemo like she could the first time around when she could count down the cycles and look forward to the return of her hair. Now she realizes that the return of her hair would mean that her cancer was no longer responding to the chemo and she has already been told that this chemo is the best chance she has. Sarah is able to say this to an anonymous nurse on the phone, but she is unable to say this to her family. She feels that she must maintain a positive attitude for her family's sake and so when they say, "Oh mom, your hair will grow back", she just smiles and says, "You're right, it will".

      The good news is that people are surviving longer and longer with cancers once through of as sure to be terminal quickly. Drugs such as navelbine, xeloda, iresssa, taxol, gemzar, herceptin, avastin, and others are given long-term to keep disease at bay and allow prolonged survivorship. Surviving on long-term chemo presents oncology health care workers with yet another learning opportunity and another challenge. The opportunity - to learn from our patients and their caregivers what the symptom experience is like in terms of quality of life issues related to long-term chemo. The challenge - to discover through research what interventions help our patients and caregivers with these quality of life issues. No longer do old ways work - for example, no longer can we simply coach patients to use "looking good, feeling better" measures for alopecia, and in using optimistic thinking that hair growth can be celebrated after the last cycle of chemo. In many instances today, chemo will continue until the body's ability to tolerate it gives out, or until the disease stops responding to chemo. So health care workers have to be careful about asking, "How many more cycles of chemo do you have left?"

      I was very grateful for the insight this patient shared with me, and I told her so. She was participating in this research study because she had a genuine interest in helping future oncology patients. I assured her that her generosity of spirit would be shared as a way of helping health care workers and others understand patients and assist them in coping. I suggested a support group - she resisted due to lack of time. This would be my only call to this patient and I sensed both her need for support and her affinity for speaking with an anonymous voice on the telephone. So I suggested she call the Y-Me National Breast Cancer Hotline at 1-800-221-2141 as a way of connecting with others who have had similar experiences. She was receptive to this suggestion and wrote down the information, including the website address - www.y-me.org. Long-term, this patient needs to share her feelings with her family, but I did not have long-term to spend with the patient and at this point the patient would not entertain "burdening" her family with these feelings. I suggested that she pick one person in her life - perhaps a friend, perhaps her chemo nurse, and begin to share her feelings with that one person, and she said she would think about this.

     As health care workers, it is very important that we prompt our patients to clarify their feelings. We might be tempted to assume an understanding of what our patients and caregivers are enduring, but unless we ask them and seek clarification, and evaluate these feelings with them, we cannot really know. In this case, platitudes such as, "Just look forward to when your hair grows back," are not helpful, and when educated, we find they are actually hurt-provoking, and can demonstrate an appalling lack of sensitivity.

Nursing interventions applicable to this patient and this situation:

1. Empathetic listening - encouraging the patient with verbal cues to clarify her feelings and emotions. Find out what the experience is like for this patient.

2. Normalize feelings - acknowledge that this patient cannot know when chemo will be stopped or what to expect when chemo is stopped, and that this situation would be frightening and frustrating for anyone.

3. Stress the importance of releasing emotions through expression of them either verbally to a "safe" person (at this point the patient does not feel free to discuss her feelings with her family), or through written expression in the form of journaling.

4. Help this patient to understand that she is feeling isolated and alone with this feeling and that a support group would be a healthy and active coping method for sharing her feelings with others. In this way, she could both receive support and provide support to others who are coping with similar situations. Sharing of common experiences, feelings and coping methods promote a sense of meaning and human bonding in times of emotional and physical suffering, and can establish a sense of general well-being.

5. Refer the patient to a program such as Look Good/Feel Better to help promote a positive self-image.

6. Explore distraction and alternative therapies with the patient such as the use of humor, relaxation techniques, music therapy, guided imagery or prayer to help her cope with the distress related to her altered body image.

7. Coach the patient to understand her own strength - she is staying on chemo despite the side effects. Turn this realization of her strength into a self-affirmation. This can be a form of cognitive reframing as in - "I am strong and despite the unpleasantness of the chemo side effects, I am choosing life". This could then be broadened into a list of the blessings and small joys in life that make her life meaningful.