Sex After Cancer

Prostate cancer. Breast cancer.

Two gender-specific diseases with distinctive similarities.

Deadly when left untreated, both claim similar numbers of lives--at least 40,000 people in the United States will die from each disease this year--and both strike a very intimate side of self-image.

The outcome of most breast and prostate cancer surgeries is good. Yet, in the process, sexual self-esteem is often jeopardized. A man cannot comprehend losing the external badge of femininity. A woman will never know how erectile dysfunction shatters manhood.

The journey from discovery to beyond recovery can be soul stripping.

“I wondered how our sex life would change after the surgery,” says Sandy Chaplain Bailey, 52, a Seattle poet. “In our lovemaking, my breasts were a large part of foreplay and comfort afterward. For us it complicated things for a while, but my husband was very reassuring in letting me know I was still desirable to him. I knew that my breasts didn’t define me,” she says.

Bailey says intimacy was emotionally and physically painful after surgery in May 1995.

“You are left with muscle and bone. I didn’t realize how much I would miss my breasts, especially during an embrace,” she says. “Foot rubs became very important.”

Linda Dackman, a San Francisco author who wrote about her experiences in the book “Upfront: Sex and the Post Mastectomy Woman” (Viking Penguin, 1991), says being undressed is definitely the moment of truth.

“It’s a metaphor for exposure,” she says. “For the woman without a mastectomy, her body may be the first layer to her inner self.”

Dackman, who had her surgery at 36, says that even 10 years later she still wears a camisole when in bed with a lover for the first time. The reconstructed breast still reminds her of a blind eye with a vacant unmoving stare. She says it will never feel like a natural breast.

“In the beginning, it was hard to understand why a man would want to go out with a woman with one breast, when he could go out with a woman with two breasts,” she says. “I was reducing myself to my body parts, not my personality. The men could see that more clearly than me.”

After her mastectomy, Melissa Jeffries thought she would never date again. “I thought I’dnever find someone who would be comfortable,” says Jeffries, 38, who works at the Long Beach Memorial Breast Center.

The man she eventually married didn’t mind at all.

“The first time we were intimate I remember feeling very self-conscious, but he made a real big effort to pay attention to both sides, even though there isn’t feeling on the reconstructed side. He made me feel sexy and wanted. I finally let my guard down.”

Jeffries says the fears of sexual encounters become trivial when compared with the emotional risk of becoming involved when you have a history of cancer. At 29, Jeffries had a lumpectomy; at 34, a mastectomy; and at 36 her ovaries were removed to stop estrogen production.

“The issue becomes: Is this someone who will want to stick through it with you if there are recurrences?” she says.

Indeed, the support of “a good relationship can be very important,” says Dr. Patricia Ganz, oncologist and professor at the Jonsson Comprehensive Cancer Center at UCLA and director of cancer control and research.

“Most studies show the mood of the partner is very much affected by the mood of the patient,” Ganz says.

Adds Carolyn Livingston, a Seattle registered nurse and certified sex therapist, “In therapy [men] talk about how much they may miss this part of her. Some find it difficult to look at the scars that remind them something is missing.”

Dackman says it is her scars that frighten men the most, sometimes bringing up life and death issues of their own. Dackman recalls her first post-mastectomy sexual encounter as tearful.

“Most times the first post-mastectomy experience is tearful and very emotional,” says Livingston, who advises couples to sit down and map out that first sexual experience.

Tom, 60, of Century City (who asked that his last name not be used) remembers a girlfriend who was concerned about their first sexual encounter.

“She’d had a radical mastectomy and was worried about what I would think,” he says. “I had to be honest. I told her it would have been nice if she still had her breast, but this is her now and I accepted that. I told her it was fine.”

Now, Tom can better understand how she felt since he had prostate cancer surgery five years ago. He doesn’t wish things were different. He simply accepts that his sexuality is defined differently now.

Like a growing number of radical prostatectomy patients, Tom had surgery that not only saved his life, but also allows him to have erections. Although the sexual desire is still there, sex is undeniably different. Erections are infrequent, and because there is no seminal fluid, orgasms are dry and can occur whether flaccid or hard. Tom says much depends on how he is manipulated physically. He is upfront and honest with his partners.

“I don’t want any surprises,” he says. “I think there’s a connection between the reaction of women and their intelligence. Women who are bright and aware are more willing to work with the situation and be supportive.”

Among prostate cancer patients, Tom would be considered a lucky man.

Nerve bundles, which control erections, are not always spared. When nerve-sparing surgery has been performed, the odds that erections will return depend on age, health and the tumor itself. Patients are told it can take up to a year to regain an erection.

“The issue of potency is not as important to some men as it is for others,” says Jean deKernion, a urologist and professor at UCLA School of Medicine. “In fact next to curing the cancer, the issue of incontinence is a bigger concern.”

DeKernion says that in patients younger than 60, the probability of having an erection after surgery is 65% to 70%, provided both nerves are saved. If only one nerve is saved, the odds drop to 40%.

“Many men think if they don’t have erections, they have failed in some way,” says Pat Turcillo, a registered nurse and prostate program coordinator at the UCLA division of urology. “Women are more concerned about losing the man in their lives than they are about losing sexual intercourse. A lot of times, it is the wives who bring their husbands to the support group.”

This was the case for Terri Ann and Cactus Walters of Inglewood.

“I had a fantastic support system. I talked to friends daily. His support group was me,” she says.

A year after Cactus had his prostatectomy, Terri Ann finally decided she needed to attend support group meetings. She told Cactus she’d go alone, but Cactus, seeing how important this was to his wife, said he’d go with her.

“What we found were people who were very generous with their time and information about the disease,” she says.

Cactus’ overriding sexual concerns were for Terri Ann. “I knew I’d be satisfied if she was satisfied,” he says.

“I didn’t care much,” Terri Ann says. “I just needed him in my life. But it became very important to him.”

The Walters eventually tried and still use the vacuum pump, a mechanical device that creates an erection by exerting negative pressure on the outside of the penis.

Having intercourse again was the ego boost he really needed, his wife says.

Dr. Jacob Rajfer, a professor of urology at the UCLA School of Medicine who specializes in erectile dysfunction, says most men do try alternative treatments, including penile injections, which stimulate the penis with drugs, and penile implants, which are surgically installed.

“The injections work particularly well in patients whose nerves have not been spared,” he says.

Rajfer advises patients to first try the less invasive options before considering the penile implant, which requires major surgery.

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Quality of life studies show that a majority of prostate and breast cancer survivors do well in the long run, especially as surgical techniques and treatments improve.

Ganz says in many breast cancer cases a woman can now have a lumpectomy, which is less drastic. “We all hope the mastectomy will be an operation of the past.” Rajfer says easier cures for male sexual dysfunction are also under development. The medicine used in penile injections may soon be reformulated into a pellet that is placed inside the urethra. Scientists are also working on a pill that opens penile-specific blood vessels.

As science becomes more sophisticated, so should the thinking of men who face prostate cancer.

“Men may have to change what their idea of sexuality is,” advises Simon & Schuster Editor in Chief Michael Korda, whose recent book, “Man to Man: Surviving Prostate Cancer” (Random House, 1996) outlines the best-selling author’s own prostate cancer experience.

“There is definitely sex after prostate surgery,” Korda says. “It may not include erection and penetration. The most important message is, the ability to exchange erotic feelings is not damaged by this surgery.”

Tom says that although sexually satisfying his partner was always important to him, it had always culminated in intercourse.

“Women can be satisfied in many ways, and I have learned more about what women have been getting at for years: the importance of intimacy,” he says.

(BEGIN TEXT OF INFOBOX / INFOGRAPHIC)

Comparing the Cancers

Prostate Cancer

* Excluding superficial skin cancers, prostate cancer is the most common cancer among men in the United States.

* One in 11 men will develop prostate cancer during his lifetime.

* For 68% of men with prostate cancer, at the time of diagnosis the disease will be confined to the prostate gland.

* In 1996, an estimated 317,000 cases of prostate cancer will be diagnosed in the United States; in California, 29,500.

* In 1996, an estimated 41,400 men in the United States will die of prostate cancer; in California, 3,900.

* African American men have the highest incidence of prostate cancer in the world. Prostate cancer is detected through a PSA (prostate specific antigen) blood test and/or a digital rectal exam. Both are recommended annually, starting at age 50 for men not at risk.

Breast Cancer

Excluding superficial skin cancers, breast cancer is the leading cause of cancer among women.

* One in every eight women in the United States will be found to have breast cancer.

* In 1996, an estimated 184,300 cases of invasive breast cancer will be diagnosed in the United States; 17,100 cases will be from California.

* In 1996, it is expected that 44,300 women in the United States will die of breast cancer; 4,100 in California.

* 77% of women with new diagnoses of breast cancer are older than 50.

* White women are more likely to develop breast cancer than other racial groups, although black women are more likely to die from the disease.

* Breast cancer is best discovered through a self exam, clinical breast exam and mammography. A baseline mammogram is recommended at age 40; annual mammograms for women not at risk should start at age 50.

Source: American Cancer Society