Sarcoma Alliance Discusses Sex and the Cancer Patient

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The nonprofit for people with sarcoma, a rare cancer, has just published an article for those having sexual problems.

Mary K. Hughes, a clinical nurse specialist in the psychiatry department at M.D. Anderson Cancer Center in Houston

Mary K. Hughes, a clinical nurse specialist in the psychiatry department at M.D. Anderson Cancer Center in Houston

One of the most important factors in improving your sexual relationship is communication: Talk about it. Ask health-care practitioners about sexual concerns; they can address them or refer you to someone who can.

Today, the Sarcoma Alliance published an article about sexuality from an expert on quality-of-life issues at M.D. Anderson Cancer Center.

Too often doctors fail to ask about sexual problems, says Mary K. Hughes, R.N., who has been a clinical nurse specialist in Anderson's psychiatry department since 1990. She assists patients with issues such as depression, anxiety and insomnia as well as cancer-related changes in sexuality.

"What may surprise many clinicians is their patients’ continued interest in sexuality, given their age, illness or disability. Unlike other side effects from cancer or its treatment, sexuality issues may not resolve after years of disease-free survival. But it is not easy to talk about despite living in a culture saturated with overtly sexual images, graphic lyrics and explicit advertising.

"One of the most important factors in improving your sexual relationship is communication: Talk about it. Ask health-care practitioners about sexual concerns; they can address them or refer you to someone who can. You do not have to suffer in silence -- help is available. If sexuality is important to you, then it should be important to your health-care practitioner, too."

Alliance board member Suzie Siegel of Tampa was diagnosed with leiomyosarcoma in her vagina in 2002.

"I was 43, with a master's degree in women's studies. I knew about ways to have sex other than penis-in-vagina. I could have taught Sexuality 101. But when my vagina became unusable, I worried that no man would want me. Mary helped me regain confidence," says Siegel, who tells her story on the Alliance's website. "Ten years later, I've retired from romance. But no one needs to make that choice for lack of knowledge.

"Although Mary works in the psychiatry department, you may find experts in sexuality in other departments at the cancer center where you get your treatment. For example, someone could have cancer in their lung, but still need to talk to someone in gynecology or urology about sexual issues. You may end up talking to a doctor, nurse, social worker -- whoever is knowledgeable and can speak comfortably in understandable terms."

Posting the topic on the Alliance's Facebook page brought quick responses, Siegel says. Iriah Smith of Long Beach, Calif., has epithelioid hemangioendothelioma (EHE) in her left leg. She wrote:

"I have tumors all over my leg all the way up to my vagina. I haven't been able to be intimate with my boyfriend in months. I often ask him while crying why are you still with me. I enjoy sex very much, but my leg is killing me with the pain, plus it is not sexy to see open lesions. I pray I can get through this."

"I had a great relationship with someone for a long time," wrote Amy Regenstreif on her blog. "He taught me how beautiful I was through many surgeries, chemos, radiation ... I learned from him that intimacy is not really about the act of sex ... it's about communication, touching, loving, and laughing ... and laughing ... and laughing."

That relationship ended, but not because of sex, says Regenstreif, a survivor of retroperitoneal leiomyosarcoma who lives in Woodland Hills, Calif. "I wonder if I will ever get to have that kind of relationship again. I am sad about the prospect of not. However, if that is what is, then I will find strength in my fabulous friendships and enjoy."

To read Mary Hughes' article on sexuality, go to: http://sarcomaalliance.org/what-you-need-to-know/cancer-sexuality/

Sarcoma is a cancer of connective tissue, including muscle, bone, fat and cartilage. It occurs in both men and women, from newborn on up. The Sarcoma Alliance is based in Mill Valley, Calif., north of San Francisco, where it was founded in 1999. The national nonprofit offers different ways for sarcoma patients to connect, such as Facebook, a Peer-to-Peer Network, live chat room, blog,YouTube channel and discussion board. It provides information from experts as well as grants to reimburse sarcoma patients who have to travel to see a sarcoma specialist. For more information, visit http://sarcomaalliance.org.

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