The Sexuality, Intimacy and Communications Module

Sexuality can sometimes be affected by a serious illness, such as cancer, and by its treatment. By "sexuality" we mean the feelings we have about ourselves as sexual beings, the ways in which we choose to express these feelings with ourselves and others, and the physical capability each of us has to give and experience sexual pleasure. Sexuality can be expressed in many ways-- how we dress, move, and speak, as well as by kissing, touching, masturbation, and intercourse. Anxieties about survival, family, or finances, and changes in body image and activity tolerance, can place a strain on the expression of sexuality and create concerns about sexual desirability.

If you were comfortable with and enjoyed your sexuality prior to your illness, the chances are excellent that you will be able to keep or regain a healthy sexual self-image despite the changes brought about by cancer. Many people who have cancer or who are the partners of persons with cancer may not experience any change in sexual feelings or behavior. Others may find that increased closeness and communication resulting from the experience of illness enhances their sexuality. Still others may never have considered sexuality to be of great importance in their lives, or may consider it less important now than previously.

If, however, you are experiencing some changes or stresses in your sexuality because of cancer or its treatment, the material presented here is designed to help you explore ideas for dealing with these changes. We do not intend to present a course in sex counseling, nor a list of "how to's" about sexual functioning. Nor do we intend to suggest that everyone with cancer will have sexual problems. Sexual problems frequently arise not so much from changes imposed by medical conditions or their treatment per se, but from how we feel about and deal with those changes. What we will do is to present concepts and principles found useful by many people handling changes in sexuality. We hope that this information will help you become more aware of your attitudes about your sexuality; that it will form a basis for you to begin to communicate your sexual feelings and needs more directly to people important to you, including those responsible for your health care. This will help you decide how sexuality fits best into your own life at this particular time.

Remember, you are the expert on your own sexuality. We hope that the material presented here will validate your sexual concerns and stimulate your thinking about how best to handle them. If you do not find your individual concerns or questions discussed as thoroughly as you might like, please consult the Resources list at the end of this chapter for further information.

Sexuality has long been a matter of great interest and concern in our culture. We have moved from one extreme, in which our puritanical views made public discussion about sexuality totally unacceptable, to the current extreme in which explicit sexuality is commonplace, exploited in popular advertising and as the main theme of many books and films. Feelings about sexuality tend to be intense ones, closely tied to moral and religious beliefs, as well as to deep feelings about self-esteem and desirability. Sexuality has different meanings and importance for each of us, and we each have our own individual ways of expressing ourselves as sexual beings.

"We are all sexual beings." This simple statement makes the important point that sexuality is part of who we are, not just what we do. Sexuality is expressed in many ways--how we dress, how we talk, how we work, and how we play. Furthermore, each of us is uniquely sexual in the sense that we each choose whether or not to be actively sexual in what ways, how often, and with whom. If sexuality were something people could easily discuss, we would no doubt see that the importance of sexuality varies tremendously from person to person.

Ways to get more comfortable discussing sexuality with your partner. Our ideas about the "right way" to be sexual come largely from myths or expectations we grew up with that may hinder expression of our sexuality. Let's take a look at some of the more common myths:

Understanding how your body changes when sexually aroused, can help people understand the particular conditions needed to enjoy sexual activity. The more aware we are of what is right for us, the greater are our chances of enjoying sexual pleasure. Most of us have learned one way of obtaining sexual satisfaction or orgasm--through various kinds of genital stimulation such as masturbation, intercourse, and oral or manual stimulation. Many people, however, are able to experience sexual excitement, even orgasm, through stimulation of other sensitive body areas. Since it is the brain, rather than the genitals, that interprets and experiences this stimulation as pleasurable, we could say that the brain is the real "sex organ." This means that we do not have to depend on our genitals for our sexuality. Our options for sexual pleasure are as varied as our imaginations.

Many people with serious illnesses find that the circumstances they need to enjoy their sexuality have been altered in some way because of the illness and its treatment. Under the stress and worry of a life-threatening illness, expression of sexuality frequently takes a back seat. It is difficult to feel sexual when you are fighting to survive, are in pain, or constantly tired. Treatment for cancer may involve lengthy hospitalizations and separations from those you love. Hospitals or convalescent facilities usually do not provide much privacy, and hence there may be little opportunity for sexual expression.

During illness, the control you usually experience over your body may be lost, and you may feel inadequate and helpless. Serious illness may change the way you experience your body, or actually change the way you look, through surgery, amputation, scarring, weight loss, or other events. These changes may create painful anxiety about whether you will be able to function in your accustomed social, sexual, and career roles or about what people will think of you. This anxiety, the depression and fatigue that may accompany it, and the numerous other worries that can occur with serious illness understandably make sexuality assume less importance.

Once the immediate crisis of serious illness has passed, however, sexual feelings and how to express them may become important to you. Feeling anxious about resuming sexual activity is normal and natural. It is easy to "get out of practice" when you are away from any activity. You may have questions about whether sexual activity will hurt you in any way or if you will be able to experience sexual pleasure. Your partner may share the same worries and may be especially concerned about tiring you out or causing you pain.

Although health care personnel are now more aware of sexual concerns, many people continue to receive little or no information about sexuality during their treatment or recovery from illness. You may in fact have no real opportunity to ask important questions. If sexuality has not been discussed with you or if your questions have been avoided, you may feel that your worries and questions are foolish, unimportant, or perhaps inappropriate. Don't let these feelings prevent you from seeking answers. Ask your doctor, nurse, social worker, or other staff person with whom you feel comfortable. They should be willing to listen to your questions and either answer them or refer you to someone who can. Help is available. Some university medical centers offer sexual counseling specifically for people with medical illness or physical disability. Your doctor or social worker will know if these resources are available near you.

Mastectomy
Experimentation and time seem to be keys to finding satisfactory ways of adapting sexually after breast cancer. Talking with other women who have had mastectomies--with support groups and the American Cancer Society's Reach to Recovery program, for example--can provide support and encouragement as well as suggestions about clothes and prostheses.

Cancer of Genital or Reproductive Organs
Surgery or radiation therapy for cancer of the genital or reproductive organs can bring about intense concerns with body image. In addition, such treatment may directly affect some people's physical ability to get erections, ejaculate, have intercourse, or orgasm. The same treatment for another person may result in little or no change in sexual functioning. This means it is quite often impossible to predict the effects of treatment for any one individual. Sexual problems that may appear to be physical results of treatment may in fact be due to anxiety and concern about body image and sexual functioning. Discussing potential problems and possible solutions with your doctor or other members of the health care team prior to treatment will reduce worry and reassure you that, if problems do occur, there are ways of handling them. Since in most situations there are no totally reliable means of sorting out physical from emotional causes of sexual problems, your exploration and experimentation about what you can do is most important. Your diagnosis does not dictate what is possible for you sexually.

Life after cancer treatment may be exhausting. Fatigue, depression and generally feeling sick are common. Treatments for cancer, such as chemotherapy and radiation therapy, may in themselves also create unpleasant and tiring side effects. The amount of energy available to you for activities of living, including sexual activities, may vary from day to day or week to week. Some people learn to cope with these variations in energy level by planning their activities to coincide with times of the day they feel best. If you are experiencing some of these difficulties, being sexually active may not always be important to you. But for times when it is, planning to have sex when you feel least tired may be helpful.

One problem that may result for women after treatment for genital cancer is painful intercourse. If you find that intercourse has become painful for you, it is important to visit your physician or gynecologist for an examination to determine the cause of the problem. It may be related to surgery, radiation therapy, or chemotherapy, or be the result of a simple problem, such as an infection. If the cause is insufficient lubrication, suggestions include the use of artificial lubricants such as Astroglide, Gyne-Moistrin, or KY Jelly; vaginal moisturizers such as Replens; and vaginal and vulvar application of estrogen creams.

For men who have trouble getting and maintaining erections and who suspect that this may be due to cancer or its treatment, we would suggest the following:

In trying to deal with erection problems it is important to explore the sensations in and around your penis. Learning about what feels good to you is valuable in showing your partner what pleases you most. Trying some of the exercises described in Male Sexuality (see Suggested Reading), either by yourself or with a partner, can help you explore your potential for erections.

The more options you have for sexual expression, the less pressure there is on having erections; this in turn makes it more likely that they will occur.

If erections have not returned and you feel that this is important to you and your partner, you may consider asking your doctor to refer you to a sex therapist for brief counseling. If after counseling you are still not getting erections, your counselor may refer you to a urologist, who, together with you and your counselor, can make a careful assessment of whether or not one of the following medical treatments would suit your particular needs and those of your partner:

After a serious illness, an interruption in your usual ability to experience sexual pleasure can be perfectly natural. For some women, this interruption may make having orgasms more difficult. If this is a problem for you, learning to re-explore pleasurable body sensations may be helpful. Doing this at a time when you can be alone and are not distracted by having to please or perform for your partner is important.

Sexuality and Fertility After Cancer, by Leslie R. Schover. New York: John Wiley & Sons, 1997
The best book covering all the practical aspects of sexuality, cancer and fertility.

Sexuality & Cancer: For the Man Who Has Cancer, and His Partner
Sexuality & Cancer: For the Woman Who Has Cancer, and Her Partner, both by Leslie R. Schover. New York: American Cancer Society, 1988.
Excellent, comprehensive booklets outlining effects of cancer and treatment effects on sexuality, with suggestions for staying sexually healthy.

For Yourself--The Fulfillment of Female Sexuality, by Lonnie G. Barbach. New York: Doubleday, 1976.
A classic that empowers women to enjoy their own sexuality, with suggestions for women who want to learn to become orgasmic.

Falling in Love Again, by Lonnie G. Barbach. 1990.
A video and workbook self-help program for men and women.

The New Male Sexuality, by Bernie Zilbergeld. Boston: Bantam, 1992.
A common-sense, practical, and sane antidote to media pressures on males to be sexual superstars. Excellent discussion of the fantasy model of sex and myths of male sexuality, the importance of an individual's conditions for good sex, and specific self-help chapters dealing with common male sexual problems.

The New Our Bodies, Ourselves, by the Boston Women's Health Book Collective. New York: Touchstone, 1992.
An excellent book by and about women, their health and sexuality.

Love and Sex after 60 (revised), Robert Butler and M.I. Lewis. Ballantine, 1993.
Compassionate and helpful book for men and women who want to continue to enjoy their sexuality into their elder years.

Prime Time: Sexual Health for Men over Fifty, Leslie R. Schover. Holt, 1984.
Provides validation and useful suggestions for men and their partners.

The Ostomy Book: Living Comfortably with Colostomies, Ileostomies, and Urostomies, By Barbara Dorr Mullen. Palo Alto, Calif.: Bull Publishing Co.,
An accurate and lively account of why colostomies, ileostomies and urostomies are necessary, and how to live with them.

Up Front: Sex and the Post-Mastectomy Woman, Linda Dackman. New York: Viking, 1990.
Moving and insightful account of one woman's experiences.

Self-Help Organizations
Consult your telephone directory for local branches of the following organizations, or write their national headquarters

The American Cancer Society, Inc.
National Headquarters 1599 Clifton Road,NE
Atlanta, GA 30329 1-800-816-7800

International Association of Laryngectomies American Cancer Society, Inc.
777 Third Ave.
New York, N.Y. 10017

Reach to Recovery
American Cancer Society, Inc.
National Headquarters 1599 Clifton Road,NE
Atlanta, GA 30329 1-800-816-7800

United Ostomy Association, Inc.
1111 Wilshire Boulevard
Los Angeles, Calif. 90017
(213) 481-2811

Professional Counseling and information Sources
Contact your local university or community mental health center and ask for information about their human sexuality program or sex counseling clinic, or for referral to a competent sex therapist.

Please add your comments. We respect your privacy.

From Supportive Cancer Care: by Ernest H. Rosenbaum, MD & Isadora R. Rosenbaum, MA
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