|Meniscus Health Care Communications|
Published by permission of the publisher
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.
Linda Dackman was diagnosed with in situ disease 9 years ago at age 34. She had a mastectomy and 3 months later had reconstruction with a silicone breast implant. Linda is single and has written books and lectured about her breast cancer experience.
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.
Question 1 - How did your breast cancer treatment influence your sexuality?
L. DackmanI experienced anxiety about trying to initiate a relationship, because l was single.
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.
C. MoorheadI had no long-term physical side effects, but l had definite emotional side effects, which are just as difficult sexually. Anything that impinges on the way that you feel about yourself-if you feel angry or sad or you don't like the way you look-affects your sexuality.
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.
C. SupnickThere was an issue of reproduction because I had a tubal ligation that I found out later was not necessary.
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.
L. BuonaguroWhen I had the lumpectomy, l didn't have any sexual side effects. The most traumatic time was after the prophylactic mastectomy. At that point everyone was understandably thrilled that I didn't have cancer again, that they didn't think they needed to worry about me anymore. So that support system disappeared. However, I was still facing having had cancer, having no breasts, depression, and a change in body image and femininity. Psychosocial effects are just incredible, but women with breast cancer may not be able to pinpoint what their problem is or acknowledge it.
L. BloomThe sexual changes that l experienced immediately after the chemotherapy were loss of desire, diminished arousal, and weakened orgasm.
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.
Question 2 - To what degree were sexuality issues and side effects of treatment discussed with you by health care professionals? Were you able to speak openly with significant others?
L. DackmanThere were no discussions. The health professionals dealt with the immediate issues of treatment and recovery. I was the one who raised issues. I tried to do some research on my own by using books and support groups, and I talked to a Reach to Recovery volunteer; this was 9 years ago, and I think I embarrassed her when I asked her questions.
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.
C. MoorheadI was informed more about medical opinions and how to make a decision regarding treatment options. I received no explanations about sexual side effects that I had with radiologists and surgeons, no one ever discussed these issues. I even asked my husband later if it was ever mentioned, and he reinforced that it was not. Maybe health care professionals take for granted that women know that cancer treatment will cause sexual problems. However, being diagnosed with a life-threatening illness, I was so focused on the medical aspects of treatment that I wasn't thinking about sexual issues.
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.
C. SupnickThere was no discussion about this issue at all from the surgeon or the oncologist. It was really swept under the carpet. I did receive illustrations of different positions that you could have sex in, and that was all.
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.
L. BuonaguroNo sexual issues were discussed by the professionals. My surgeon told me that there wasn't a problem unless I made one. I had no idea that I would feel the way I did. My doctor told me to continue having sex the way I always did. After the lumpectomy that was fine, but after the mastectomy I couldn't continue having sex the same way because I didn't have breasts.
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.
L. BloomNo one ever asked me about my sexuality. I am a very assertive person and a psychotherapist, and I know that it doesn't do any good to harbor feelings when you're upset. I also do sex therapy. Because I assert myself and speak up, I brought up the sexual issues, at which point they were quickly dismissed.
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.
Question 3 - To what do you attribute the sexual problems you experienced?
L. DackmanMuch of my problem was caused by anxiety and fear of rejection rather than actual physical effects. I imagined that sex would be the big hurdle to get over, and I discovered that it was not. I found that the more difficult hurdle was nudity.
C. MoorheadMy sexuality problems were due to the miscarriage, the mastectomy, and the reconstruction-many of the things you associate with your femininity-- and the toll it took on my psyche.
C. SupnickMy marriage ended quickly, and I was in the position of being a single woman having body issues that needed to be discussed with potential partners. I had a lot of learning to do, and I needed sexual intimacy Coping with explaining my surgery, body changes, precautions during intimacy, and "training" partners in how to proceed were a challenge.
L. BuonaguroI feel it was the loss of my femininity and self-image. When I slept at night and my hands touched my chest, I was startled when I was able to feel my ribs-feeling something hard instead of soft. I found that I needed to wear my prosthesis when sleeping, not for my husband, but for myself. I'm certain that it was chemotherapy, although I was told over and over that it was the "changed breast." However, prior to my breast cancer I had a mismatched pair; during adolescence I had a lot of emotional upset about this. So I have already worked through body image, and this is not an issue for me now. For many other women it is. The grief I felt from losing my sexual pleasure has been more difficult than the cancer. I now question my decision to have submitted to chemotherapy.
Question 4 - What type of support and information about sexuality were you most in need of and how did you cope?
L. DackmanI was looking for other women's experiences, but I didn't really find an exact match. I had a friend with cancer of the labia. She had surgery that changed the appearance of her outer sexual organs, and she was also concerned about sexual issues. I was able to speak with her because we had some similar psychosocial concerns.
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.
C. MoorheadI needed support primarily from my husband, followed by my counselor and then my children, ages 6 and 10 at the time. My husband took a lot of my anger. Its painful to remember when talk about it now. I would get angry at things that normally wouldn't make me angry. He had to absorb a lot. I also needed to know that there were therapists trained to deal with these issues.
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.
C. SupnickI did not have any support. My husband was not a source of support, and I did not feel comfortable discussing this issue with my family or my close friends.
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.
L. BuonaguroI needed understanding from my husband. He was supportive not only with respect to the sexual side effects, but also in encouraging me to make decisions about reconstruction that i would be happy with. I also needed my therapist and written information, which I was able to obtain.
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.
L. BloomI wanted someone to say to me, "Your ovaries and adrenals have been damaged by the chemotherapy, and that is why you are experiencing this change in your sexuality." No one ever told me that. My gynecologist even told me that I had a psychological problem from the stress of living with a life-threatening illness.
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.
Question 5 - What information do you feel is most lacking about sexuality issues after cancer therapy?
L. DackmanEvery step of the way women need physical and psychological information about the following: tips on lovemaking after therapy, safety issues after having an implant, physical side effects with radiation therapy and chemotherapy, discussions regarding how women might feel when they're nude, reentry issues for single women, issues surrounding chemotherapy and libido during various stages of disease, and menopausal and fertility effects of chemotherapy (especially for premenopausal women).,p>
C. MoorheadOne piece of information that is lacking is how to communicate with women who have been diagnosed with breast cancer. For example, women should be given permission to grieve. So many people don't want a woman to grieve and to feel angry, and then she wonders if her feelings are appropriate. Health care professionals shouldn't try to jump ahead but should let the woman get information, or if I wanted to cope at her own pace. It's also important to let women know that in time they will begin to feel better and that their lives will go on. People are also in the habit of telling women like me how lucky they are that the cancer was found early and that they have a supportive family. However, women don't feel very lucky when they have just been diagnosed with cancer.
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.
C. SupnickI feel that information is lacking regarding how women can share and express their feelings about their breast cancer, treatment, and side-effects. Also lacking is information on reentering a sexual relationship. Information related to masturbation and self-stimulation may also be helpful, especially for people who do not have sexual partners.
L. BuonaguroWhile I was hospitalized, no one ever asked me if I wanted information, told me where I could get information, or if I wanted to discuss sexuality issues. Women need to have general information and support about sexuality, whether they are having a lumpectomy, a mastectomy, or reconstruction.
L. BloomHealth professionals need to be informed about the sexual quality of life of women who receive chemotherapy.
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.
Question 6 - What advice to you have for women with breast cancer and health professionals caring for them?
L. DackmanFor the women: They should not give up. There is no reason to sacrifice themselves to the aftermath of the disease. There is a process that women go through; they complete it at different times. Unfortunately, I know women who assume that the sexual part of their life is over because they aren't willing to test it.
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.
C. MoorheadEven if they only discuss general issues of sexuality and side effects, health care professionals can provide resources and referrals to trained professionals in the area of sexuality. Professionals should also encourage women to get back to a normal routine as soon as possible. That's one of the best ways to feel whole and good about yourself again.
C. SupnickWomen can't let their cancer be a secret. They need to bring it to the surface to make it easier to deal with. However, they must do so within the confines of a very trusting and emotionally intimate relationship.
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.
L. BuonaguroWomen should look for a facility that will take into account their physical and emotional well-being. In addition, women should not hesitate to go for counseling if they think they need it. Finally, they should read as much as they can and become knowledgeable about resources that may be applicable to them.
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.
L. BloomI want women in a predicament similar to mine to trust their body, their experience, and their intuition about the cause of their side effects such as hormonal changes, even if their doctors do not validate their feelings. Women should not doubt their emotional health. They should be aware that testosterone replacement is available and can be helpful. I also use small amounts of vaginal estrogen twice a week, and that helps me too. Many doctors will not prescribe these, but I found a physician who would. At this time, I haven't been restored to my prechemotherapy level of sexual functioning, but I am much better physically and psychologically.
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.
[Editor: You might want to mention you saw this on OncoLink]