How to bring the loving back after cancer

American psychologist and Israeli social worker discuss reinvigorating the sex drive after cancer treatment.

By
March 11, 2012 03:30
Sharon Bober (L), Rivka Klein (R)

Sharon Bober (L), Rivka Klein (R)_370. (photo credit: Judy Siegel-Itzkovich)

 
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It’s unfortunately an “unmentionable” subject that even makes many physicians blush – and many others avoid raising the subject at all. But as growing numbers of cancer survivors want to resume intimate relations with their partners, raising awareness of the problem and offering clinical help need to be put on the agenda.

Prof. Sharon Bober, a clinical and research psychologist at Harvard Medical School’s Dana-Farber Cancer Institute and the faculty’s psychiatry department is doing much to increase awareness. In fact, she is director of the institute’s multidisciplinary sexual health program for cancer survivors, which is the only sexual health program of its kind in the whole state of Massachusetts.

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One of the handful of Israeli experts in the field is Dr. Rivka Klein, a Jerusalem-based clinical social worker and sex therapist who received her PhD in social work at the Hebrew University – but very few of her colleagues have training in this specific field. Yet when the two women met for the first time on the occasion of the International Society for the Study of Women’s Sexual Health conference in Jerusalem, they used the same terminology and conversed with familiarity, as if they had worked together for years.

Klein was surprised that Bober knows some Hebrew. “I lived here as a student 25 years ago, and last visited in 2000,” Bober explains.

The conference, at the Crowne Plaza Hotel, brought together psychologists, psychiatrists, social workers and others who work in the field of women’s sexual health.

The Harvard psychologist graduated from Clark University in Massachusetts that since 1994 has managed a bilingual graduate program and branch campus here. She then did her postdoctoral work at Harvard Medical School. She was especially drawn to the mix of cancer survival and sexuality.

“It was not a subject that others were doing,” says Bober. “I worked with cancer survivors; in the US alone, there are 12 million of them. Returning to one’s previous level of intimacy can often be a problem, because surgery, chemotherapy, radiotherapy and hormonal medications may cause a lot of long-term side effects that interfere with sex.”



She believes that sexual health is an important quality-of-life issue. As a behavioral medicine psychologist, she takes an integrative perspective on human experience.

Sexuality, she says, is an experience at the junction of mind, body and relationship, and cancer treatment can affect all of those elements. From the first session, she tells patients that sexual dysfunction deserves as much attention as any other quality-of-life issue; that the problems should not cause embarrassment or shame; and that there are treatments that really work.

Cancer treatment may result in heart damage, kidney problems and disruptions of both male and female sexual function.

Men can become impotent, while women who had ovarian cancer can be propelled into early menopause. Other types of cancer can also have side effects.

Bober gives the example of one 38-year-old woman who suddenly lost her ovaries to cancer. “She hadn’t been told about what would come next in her life. She wasn’t ready for it. Her doctors told her she should be happy to be alive. But she and her partner suffered from her hot flashes, vaginal dryness, fatigue, dramatic loss of estrogen and lack of libido. She was depressed.”

Klein says the Israel Cancer Association is “very good in its patient support work talking about side effects. There are also ICA booklets in oncology departments about intimacy and cancer. But many patients need more information, and their doctors don’t talk – or even know how to answer.

Usually, either the patient is ashamed to raise the issue or afraid to embarrass their doctor – or the physician doesn’t know enough to raise it or afraid to embarrass the patient.”

Although she is an observant Jew, Klein is not shy about discussing the matter with both women and men – even with modern Orthodox or haredi (ultra-Orthodox) women and men.

“I find that men will talk to me. Sometimes men prefer to talk to a woman about these intimate matters because they think that women are more compassionate than a male therapist. A man who goes to a male therapist may regard the professional as a mirror image of himself and feel threatened” When it is helpful, “I tell them that even if a woman loses her clitoris to cancer, there is a layer of tissue that can still make sexual arousal possible,” says Klein. “I show diagrams of the physiology and tell them that I can help them. Even without cancer, a person who suffers a myocardial infarction [heart attack] and is afraid of physical activity can be rehabilitated and enjoy a good sex life.”

Bober encounters many men who suffered nerve damage when their prostate tumors were removed. Some benefit from erectile dysfunction drugs, but some do not. It is very variable. Some men do fine, but 50 percent to 60% never resume full erectile function,” she says.

The longer patients wait to undergo rehabilitation of their sexual functions, the harder it is to preserve.

“It is very important for them to get oxygen flow into their penile tissues,” she continues.

“It’s like the need for ordinary exercise. Under normal circumstances, men get erections at night. The body does it naturally to increase blood flow. At my center we teach men a conditioning treatment to get the blood flowing, but not through sex, during the first six weeks after the catheter is removed. This is a window of opportunity for them, and without help, it could close.”

The Harvard therapist also tells women patients about the need for stimulation.

“The penis is more obvious, but it’s the same for clitoral stimulation. If a woman suddenly goes into premature menopause and has low desire, she needs to stimulate blood flow to the clitoris by various means.”

She also partners with a team of physical therapists who help patients with weak pelvic floor muscles. Pelvic physiotherapy is well-developed but too-little used, she says, as a treatment for both men and women who have undergone pelvic radiation and are dealing with the weakening of tissues.

In addition to her research and clinical work, Bober regularly teaches physicians about how to talk openly about sexuality after cancer. She has 40 professionals in her Dana Farber team.

“There are a lot of people who specialize in sexual medicine, but only a small subset who work with cardiac and cancer survivors and medical illness. Even younger cardiologists and oncologists may feel no obligation to talk about sexual function with their patients or don’t like to discuss it themselves. We have studied primary care doctors, many of whom weren’t prepared for broaching the subject.”

Klein adds that in Israeli medical schools, only a few hours of the entire curriculum are devoted to sexual health.

“In American culture, you hear about sex constantly, and also about breast cancer and other tumors. But there is a taboo on discussing treatment for sexual problems that result from them. Even many married couples who had good sex lives before don’t talk about the issue,” says Bober. “It’s sad. Couples who had a good sex life didn’t have to talk about it, as things were working properly, but afterwards, it’s like the ‘elephant in the room.’”

Observant Catholic cancer patients she encounters in her practice “seem to have more trouble talking about such issues than other religious groups,” Bober says. “I tell them sex is not just about penetration. Sexuality is a whole lot of other things. If you can’t do that any more, your tool kit is not empty. There is much more to intimacy.”

This problem cuts across a variety of Israeli religious and ethnic groups, adds Klein.

Male cancer survivors can get testosterone pills or patches, but the hormone may cause cardiac problems and in older men, it might even cause cancer itself.

Women can’t always be given estrogen to improve their sexual function. The pharmaceutical industry would love to find a magic pill. Medications could have a huge placebo effect [making patients feel better because they think pills help], Bober continues.

But “patients usually need psychological treatment, an integrative mind/body model. Women who have had a mastectomy, for example, usually feel very unattractive.

Men are happy if their partners have breast reconstruction, but women feel different because the surgery does not restore breast sensation, which is a big part of arousal. Different erotic zones must be explored for the same result.”

As Jews of Ashkenazi origin are statistically more likely to carry the BRCA gene – which significantly raises the risk of premenopausal breast and ovarian cancer – Bober asks Klein about prophylactic surgery to remove the organs to avoid the disease.

“It is becoming very common in the US among BRCA carriers,” notes Bober. “I currently am treating a 27-year-old BRCA carrier who is undergoing prophylactic surgery.

Abdominal fat is often used to replace breast tissue. If you saw them naked, you wouldn’t even know.”

But Klein answers that Israeli women in the same situation tend to avoid this.

“Here, prophylactic oophorectomy [removal of the ovaries to reduce the risk of ovarian cancer] is much more common than prophylactic mastectomy,” she says.

Bober has received a US National Cancer Institute grant to develop a sexual health intervention for young, high-risk women who undergo this preventive surgery.

Many women who become prematurely menopausal suffer from vaginismus, in which dryness makes sex painful. The good news, continues the psychologist, is that “many patients don’t need extended psychological treatment. Education and information about lubricants, for example, may be enough. Our center recently made a video on the subject to help. But American TV wouldn’t broadcast a serious program on such subjects, even though sex talk is rampant.

The McMillan Cancer Center in the UK has a very nice, free video. But much more informational material is needed.”

Klein, who has a private practice, also works in a public health fund once a week so patients who can’t afford it can get care by paying a nominal fee.

“I don’t want the lack of money to prevent people in distress from getting help. I usually ask couples to come together to a session at least the first time.”

Within a decade, agree Bober and Klein, they hope the subjects of sexuality, therapy and cancer will have “come out into the open.” They also both feel it is a “great privilege” to do the work they do.

“It would be great if not only doctors were educated and willing to discuss these issues, but patients were also willing to hear about them,” they conclude. “There is no reason why people have to suffer in silence. They have suffered enough already.”

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