Published by permission of the publisher
Innovations in Oncology Nursing Vol. 10, No. 2, pp.29,46-51, 1994
Copyright ©, 1994.
When a woman is diagnosed with breast cancer, the initial priority is to treat the disease. This treatment may include lumpectomy, radiation therapy, mastectomy, with or without reconstruction, chemotherapy, hormonal therapy, or a combination of these. However, during the search for an appropriate treatment option, the woman must also be informed about many other issues, often in a short period of time. One issue that is frequently overlooked is the sexuality needs of a woman before and after treatment.
Following are interviews with five women who were diagnosed with breast cancer and underwent different cancer treatments at various stages of life. They share their experiences of diagnosis and treatment and their changes in sexuality. As much as possible, the responses of the interviewees were unchanged during editing.
Cynthia Moorhead was diagnosed in 1985 at age 38. At diagnosis she had no lymph node involvement. She had a mastectomy and 6 months later had a prophylactic mastectomy of the other breast. She had reconstruction with implants at the time of her second mastectomy. She did not have chemotherapy, because at that time it was not recommended for women who had no lymph node involvement. Cynthia is married and has three children. One of her children was conceived after her cancer diagnosis and treatment.
Cindy Supnick was diagnosed with stage II breast cancer 13 years ago at age 29. She had bilateral mastectomies 6 months apart followed by reconstruction with implants. The first breast was reconstructed 3 months after her first mastectomy, and the other breast at the time of the second mastectomy. She did not elect to have chemotherapy or radiation, but rather a more holistic therapy of diet and positive thinking. She also underwent tubal ligation because her doctors felt her high estrogen level would make it dangerous for her to become pregnant. Cindy was newly married at the time of her breast cancer diagnosis and has since divorced. She is currently pursuing a master's degree in social work as a result of her experience.
Lydia Buonaguro was diagnosed 7 years ago at age 39. She had a lumpectomy, removal of lymph nodes, and radiation therapy. One year later she had another lump in the same breast and had a mastectomy. She also developed lumps in the opposite breast and opted to have a rophylactic mastectomy. One year later she had reconstruction of both breasts, including nipple reconstruction. The diagnosis, treatment, and reconstruction (with saline implants) spanned a period of 3 years. Lydia is married and has 2 children.
Linda Bloom was diagnosed in March 1991 at age 44. Her therapy consisted of adriamycin and cyclophosphamide for four cycles, a lumpectomy, and 33 radiation treatments. Linda is married. Since her breast cancer experience, she has initiated efforts to study the loss of sexual desire in women related to androgen deficiency that may be stimulated by chemotherapy.
Following my surgery I dealt with the psychological pain of confronting the change in my body and the loss. I deferred sexual relations until I had reconstruction.
I felt like my body failed me because I had cancer and also because I had a miscarriage a few months before my cancer diagnosis. My self-image and body image paid the price. l didn't want to permit myself to feel good about myself or about my sexuality. Even when I had reconstruction, I wasn't happy with the results. For some time l even contemplated having the implants removed. They were no substitute what I had.
I also had physical changes in terms of touch and sensation in the area of my breasts. I also experienced many complications. Skin grafting was required, so I had nipples made from my ear- lobes, and I had grafting from my thigh. My entire body was affected. I had no problems after my first implant was placed. However, the implant on the second mastectomy site collapsed, had to be removed, and was replaced. This second implant traveled and collapsed and is still in my body.
Psychologically, l experienced feelings of anger and victimization from my physical complications, and l was disappointed with the outcome of the surgery.
I had concerns about going out in public. I was conscious of people always looking at my breasts first and my face second. I also had to reorient my center of sexuality away from my breasts, where it had always been.
I went through the radiation therapy very easily, with minimal fatigue and "sunburn" to the irradiated breast. l was, however, very sick with the chemotherapy. l wasn't too alarmed about the sexual problems at first, because l felt so horrible. It was months after that-when I had my vigor back, was working out in an aerobics class, and was strong again but still had the same symptoms-that I was really certain that something was hormonally wrong with me. I continued to report these symptoms throughout the months after my treatments ended. The doctors continued to tell me, "Give it time." After I knew that I had given it time, I began to realize that l had sustained some type of physical damage. None of the doctors ever validated that.
I think because I was young, single, had short-term therapy (a mastectomy), and had a good prognosis, I was hell-bent on getting back to a normal life. What I didn't know was how to play the game-so I searched for a step-by-step plan of what other people had done (e.g., How do you tell people about your past experience? When do you tell them?). My main fear was one of rejection. Another fear was my inability to imagine being in a sexual situation after what had happened to my body.
I had a boyfriend at the time. Although one might expect that you grab any person available, that wasn't my reaction. It was as though I had to prove that I could handle this on my own. I also thought about getting involved with someone I had been in a relationship with before, who knew me before my breast cancer experience.
One boyfriend said, "No," and I was outraged and accused him of rejecting me because of what had happened. I found out later that it had nothing to do with my breast or the cancer. He didn't want to be a testing ground for what l wanted to prove to myself, and then have me move on.
I was always able to discuss sexual issues without difficulty with my husband. We were also able to talk about sexual issues related to my cancer. I sought counseling by Barbara Rabinowitz, a nurse and social worker who is trained in women's issues. My husband came with me the first time. He was also with me when my bandages were removed following surgery.
My husband and I were overwhelmed with the simple physical matter of trying to have intimacy post surgery and with the fear of dying. We also had to cope with not being able to have children. All of these factors affected my self-esteem.
My husband was very sensitive. He asked me to tell him what my needs were and how he could help. He didn't want to press me to have sex before I was ready, so he let me take the lead, always remaining affectionate and caring. Perhaps because he was so understanding, it didn't take long for me to begin to readjust. We had a difficult period leading up to the first time that we had sex after my second mastectomy, because i didn't feel the same. When we did actually have sex after the mastectomy, we found other erogenous zones that made sex natural and exciting.
I was not even told that I would go into menopause, let alone experience sexual changes. My consent form for chemotherapy only outlined nausea, fatigue, and hair loss. I made a big fuss to my physician about that later and said that the appropriate information should be on a hand- out in addition to being communicated verbally.
Of all the doctors I spoke with, my surgeon was the most kindhearted, but he admitted that sexual issues were not his area of expertise. l was grateful that he told me the truth, because some people just tried to fudge the issue and wouldn't admit that they didn't have sexual information to share. No one gave me any resource information either.
I'm fairly vocal, so I just got involved and started writing about my experience. I interviewed other women with breast cancer and published our experiences.
I was faced with the fact that my children still depended on me. When you're recovering from something like this, it's nice to know that there are people expecting you to recover.
I definitely went through quite a depression. My children knew that there were times that Mommy was in her room and didn't want to come down for dinner. I don't know how much they understood, but they knew that I wasn't myself.
Finally, I received general support from friends who knew I was experiencing a loss.
I was in need of therapeutic support to deal with the loss of my breast, the possibility of death, the loss of the ability to have children, how to deal with the sexual act, and any necessary precautions and ramifications of the surgery. The plastic surgeon really needed to be more specific. The only comment made to me was "Your breasts will last longer than you will."
Strong psychosocial services should have been available from the time I saw the physician, and information and support should have been given to my significant other before surgery. I've thought a lot about where in the continuum education and support should be given to the patient and her partner. The average stay in the hospital is 2 days. Should the nursing staff be responsible? Does the nurse have time and is the patient able to comprehend this information anyway? On the other hand, who does the woman see postsurgery? After I worked some of the emotional issues, I turned to the American Cancer Society to become a Reach to Recovery volunteer. Through that journey I came across a lot of the information that I needed so long ago.
My therapist, Barbara Rabinowitz, met with both my husband and me for some sessions and with me alone for others. We worked with her for a few months. She was able to identify exactly what we were talking about without our having to elaborate at great length. Both of them were helpful in my decision to have reconstruction.
I also went to a support group at a hospital that was very good, but I wasn't able to discuss some of my innermost issues in the group. I feel that often women will not open up in a group. They were helpful to a point, but I also needed one-on-one therapy. They also had a group for women and husbands/supportive others. I gave talks to each on general issues about cancer and living after the diagnosis and answered their questions.
My husband is a beautiful, patient, and understanding man. He listened to me for hours and held me while I cried and when I was angry about being robbed of my sexuality. He is a therapist also and often served as my sounding board. We have a wonderful marriage, and we've worked hard over the years to achieve trust and communication.
I also have a devoted group of female friends who listened to me express my feelings. I went to a breast cancer support group for a few months during chemotherapy and a couple of months afterwards. I didn't feel that the women in my group had the necessary level of support to give me. Many women were shy and didn't say very much. I was struggling with losing my sexuality. I ultimately left the group because I felt the other women were on a different wave-length.
I also feel it is necessary that women be given the opportunity to network with a trained Reach to Recovery volunteer -- someone who has been through a similar experience. I am a volunteer, and I provide a booklet about sexuality and other useful information to women facing circumstances similar to what I've been through. Often this is the first chance that a woman has to talk with someone else who has had breast cancer.
Another piece of information that I lacked was the knowledge that when women are affected sexually by diagnosis and treatment, it is not unusual to become inorgasmic for some time. It is important to know this is temporary.
I was in such a rage against medical community after my chemotherapy that I couldn't deal with any of them. I didn't go back for follow-up mammograms chest x-rays, and blood work for several months. My trust was so diminished.
When I chose an oncologist, I purposely chose a woman because I thought that there would be and more caring. She turned out to be the coldest and most rushed of all of my physicians. My gynecologist with whom I also had problems was a woman too. So, in my experience I did not receive more compassion from female physicians.
To health care professionals: Somehow the dialogue regarding sexual issues has to be open and an integral part of the treatment. Women should not go through this experience with the presumption that they won't have any problems or that everything will go back to normal after cancer treatment. Women need to be asked if they have concerns and, if necessary, to be referred to places where they can discuss sexual issues.
One has to reestablish a sexual relationship with a partner slowly and relearn what was once taken for granted. It's also important for couples to understand that sex does not necessarily have to mean intercourse. I found it helpful to keep a personal diary and encouraged myself to have fantasies and to rethink my body.
I think that health care professionals have to deal with the entire person and not just physical problems. This is part of their responsibility, and they should take it upon themselves to be educated and responsible for giving out the information. If information was disseminated by health care professionals, I feel that it would add more credibility to the subject matter.
Health care professionals should be sensitive to all patients' issues and concerns. I felt that in my case, the nurses were more sensitive. After my lumpectomy, the nurse hugged me and shared a similar experience of her own. Just prior to my prophylactic mastectomy my nurses gave me verbal support about my treatment decision.
Male health care professionals need to be more sensitive to the woman's sexuality issues. Even though cancer is a life-threatening situation, one can't assume that sexuality isn't important, because it's part of life. The assumption should be that the woman will live, and sexuality will be part of her life.
It's ironic that the Bobbitt case in Manassas, Virginia, has received such monumental coverage because the husband's penis was severed. Women have their breasts removed, and it's so matter of fact, it's incredible. The fact that it's taken so long to develop conservative treatment options for women is overwhelming. Not enough energy has been used to look at these issues.
I want health care professionals to hear what women with breast cancer are saying and to be advocates for them. I feel that it would be so easy to determine women's testosterone levels before chemotherapy and at intervals following treatment. I feel certain that they would find that they plummet from the chemotherapy. I would really like to see research done in this area.
Linda Bloom is conducting research via a questionnaire about sexual side effects of women who have received chemotherapy for breast cancer. If you are a breast cancer survivor who has had chemotherapy and would like to participate, you can contact her at:
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