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Coping and support
By Mayo Clinic staffLiving with cancer is challenging. But dealing with the physical effects of vulvar cancer and its treatment can be especially difficult. In particular, if your treatment involved vulvectomy, lymph node removal or pelvic exenteration, you may wonder how the changes in your body will affect your normal activities, your relationships and your sexuality.
It may be difficult to come to terms psychologically with the physical changes you've experienced. Although there are no easy answers for coping with vulvar cancer, the following suggestions may help:
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Find ways to make your life easier. If you have problems with incontinence or need to change an ostomy bag, for example, try to sit in the back of a movie theater, concert hall or meeting room. That way you're less conspicuous if you need to leave for the toilet. Sit in an aisle seat on an airplane or train. Allow for breaks when planning long trips, seminars or excursions.
If chronic fatigue is an issue for you, make rest a priority and take assistance when it's offered. Now isn't the time to turn down your friend's offer to make you dinner. And, although it may seem counterintuitive, exercise may help you feel less fatigued, as well as boost your spirits. Talk to your doctor about what kind of exercise might be right for you.
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Share your concerns with others. When you feel ready, consider talking to someone you trust about your concerns. This might be a friend, a family member, your doctor, a social worker, a spiritual adviser or a counselor. You may also find it helpful to talk to other people with vulvar cancer. They can tell you how they've coped with problems similar to the ones you're facing.
One of the best ways to do that is to join a support group for people with vulvar or gynecologic cancers. Although support groups aren't for everyone, they can sometimes be a good resource for practical information about your disease. You may also find strength and encouragement in being with people who are facing challenges similar to yours.
If you're interested in learning more about support groups, talk to a doctor, nurse, social worker or psychologist. They may be able to put you in touch with a group in your area. Or check your local phone book, library or cancer organization. The National Cancer Institute also can provide a list of support groups. So can the American Cancer Society at 800-ACS-2345, or 800-227-2345, or CancerCare at 800-813-HOPE, or 800-813-4673.
After deciding to participate in a group, try it out a few times. If it doesn't seem useful or comfortable, don't feel like you have to continue.
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Don't be afraid of intimacy. Your natural reaction to changes in your body may be to avoid intimacy. Although it may not be easy, it's vitally important to discuss these feelings with your partner. For example, a light touch and use of lubricant may help you avoid painful irritation. You may also find it helpful to talk to a therapist, either on your own or together. Remember that you can express your sexuality in many ways. Touching, holding, hugging and caressing may become far more important to you and your partner. In fact, the closeness you develop may produce greater intimacy than you've ever had.
Intimacy issues may be even harder to address if you're not currently in a committed relationship. You may worry that no one will ever find you attractive or desirable. In that case, the advice and understanding of a medical social worker or other therapist who is knowledgeable about vulvar cancer can be a tremendous help. Your doctor may be able to recommend a qualified counselor. Or call the National Cancer Institute's toll-free information line, called the Cancer Information Service. It provides access to trained counselors and accurate, up-to-date information on all aspects of living with cancer. You can reach the Cancer Information Service 24 hours a day at 800-4-CANCER, or 800-422-6237.
