Many people have questions and concerns about sex during or after cancer treatments

Note: This article first appeared in the Spring, 2001 issue of PROGRESS

Sallie Foley, M.S.W., senior social worker in the departments of Social Work, Obstetrics and Gynecology, and Urology at the University of Michigan Health System, answers questions about sexuality after cancer. Ms. Foley is a certified sex therapist and sex educator.

A.I think individuals when they are first diagnosed with cancer have one thing on their mind - how can they get the best treatment possible? Additionally, after a diagnosis, people are not usually interested in any kind of sexual counseling right away. Once they get their balance back, once they regain their sense of equilibrium, then they start to address how the cancer and its treatments have affected them as a whole person. Inevitably, one of their first questions is how has the cancer experience affected their sense of sexuality and their ability to function sexually in a way they can really enjoy. I think people come for counseling because sexuality is a quality-of-life issue, part of our identity as a person. When your sexuality is affected it can have negative effects on your sense of self-esteem and your identity. Our job as sex therapists is to help people discover ways to enjoy their sexuality again.

Q.What should patients know about sexual activity while they are under-going cancer treatment?

A.I think that patients need to be aware that they are experiencing cancer treatment within a culture that is more comfortable talking to people about treatment than about sexual functioning. Cancer patients may have questions that some doctors aren't raising. Many doctors are just like the rest of us, educated in an environment that doesn't talk very much about sex. Patients need to know that they have the right to ask questions about how their treatment impacts their sexual functioning. They need to ask those questions.

Q.Who is the best person to talk to about these issues?

A.I think that the first thing to do if you have a question related to the side effects of cancer treatment is to discuss it with your physician and your nurse. They may have suggestions and very good advice to give you. But then, do not hesitate to follow up and get additional information by reading and perhaps contacting a sex therapist.

Q.Is professional help for sexual problems covered by insurance?

A.There are many different kinds of insurance and some do cover sex therapy. But some insurance policies do not recognize or cover sex therapy, although it is recognized as a form of therapy by the American Psychiatry Association, the American Psychological Association and the National Association of Social Work.

Q.If someone's insurance doesn't cover sex therapy, where else can they get help?

A.There are a couple of possibilities. First, they can pay 'out of pocket' for sex therapy. Sex therapy tends to cost what other forms of counseling cost - between $80 and $120 a session. If they cannot afford sex therapy, then my recommendation is that they get the wonderful American Cancer Society booklets Sexuality and Cancer (for men and women). They can also visit cancer organizations' web sites, like the Association of Cancer Online Resources, and join an e-mail support group. These list servers are private. There is no way for anyone outside the group to get your e-mail address. Your questions can be posted and other people anywhere in the country or world who have dealt with a similar concern may share how they have handled that problem. Counseling is excellent if people can afford it. If they can't afford it, then education and support are very helpful. Certainly get educated because isolation and stigma are probably the biggest enemies of healthy sexual function.

Q.What are some common sexual concerns that cancer patients bring to you?

A.The most common sexual difficulty is fatigue. Fatigue will drive sexual desire into the ground. When people are going through any kind of chemotherapy or radiation or following surgery, they need to be flexible. If they are not feeling sexual desire they need to remind themselves that fatigue and going through treatment is very difficult. They need to be very kind to themselves and to rest a lot, and try to move any kind of sexual interaction to a time of the day when they feel more energetic. The second main concern would be difficulty feeling arousal because of the general drying effect from radiation or chemotherapy. Sexual arousal is primarily a vasodilation response. Since the cancer treatments may be drying their system, one may experience arousal changes - they may not feel as much pelvic swelling for women or erectile fullness for men. Surgery may also create sexual concerns- super sensitivity or numbness at the surgical site, or the loss of self-esteem and identity issues that come from changes in one's body. So common sexual concerns include fatigue/loss of desire, and difficulties getting aroused.

Q.What is the most common misconception or myth about sexuality after cancer?

A.That sex is only for the 'well.' It's a myth that if you are a cancer survivor, you should just be grateful to be alive. I have heard this voiced by family members, partners and cancer survivors. Perhaps the saddest way I heard it described was a women who came to her physician, where she was in cancer treatment, asking for information about sexual function and her physician responded by saying, "I saved your life, what more do you want?" And of course the "more" that she wanted was to be fully able to experience her life and enjoy her sexuality. So I think the biggest, most pernicious myth is that sex is only for people who aren't cancer survivors.

Q.How can you dispel this myth?

A.People need to know they are not alone if they have a question about sex, and they are not alone if they feel that sex is important to them. They are not alone if they want to expand their sexuality so they can adapt to their current lifestyle and their current body. Sex can be adapted. We look for resilience in people, and we help them develop that. I am a big believer in spreading the word that sexuality is healthy!

People need to know they are not alone if they have a question about sex, and they are not alone if they feel that sex is important to them.

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