Breaking the silence between sexuality and cancer

When Tracy Maxwell, an entrepreneur in Denver, Colorado, who had been diagnosed with ovarian cancer in 2006, began dating again after finishing treatment, she says she engaged in relationships that were almost entirely sexual.

“It took me three years to examine that pattern,” says Tracy, who was single at the time of diagnosis. “It wasn’t very healthy.”

Tracy, who enjoys camping, hiking, biking, and whitewater canoeing, says her body image changed after two surgeries, the removal of her right ovary, and six rounds of chemotherapy.

“When I finished treatment, I didn’t have hair, eyebrows, or eyelashes. I had tons of zits and had gained weight from the steroids,” she says.

Even after her hair grew back and the blemishes cleared, Tracy says that, subconsciously, she was still trying to prove her worth by having relationships focused on sex.

A Common Issue

Tracy’s altered body image is common among survivors. Anne Katz, RN, PhD, a sexuality counselor at CancerCare Manitoba in Canada says that the cancer experience can have a profound impact on body image.

“Our body image is very closely associated with how we are seen as sexual beings,” Dr. Katz says, and yet “there’s not a lot of talk about sexuality in the oncology world.” In fact, though most serious illnesses affect sexuality in some way, sexuality counselors are not common in hospitals and cancer care centers.

Tracy Maxwell and Dr. Katz are among those who are trying to bring more attention to the sexuality issues that survivors face. Whether by traveling across North America to teach healthcare providers how to talk to their patients about sexuality, as Dr. Katz does, or by organizing canoe trips on the Colorado River for single survivors, as Tracy does, both are determined to encourage providers and patients to address this important quality-of-life issue.

“Just as we discuss the other side effects of cancer—nausea and hair loss—we need to talk about the sexual side effects,” says Dr. Katz, who has authored several books on the subject, including Sex When You’re Sick: Reclaiming Sexual Health after Illness or Injury and a handbook for healthcare providers called Breaking the Silence on Cancer and Sexuality.

An Important Conversation

Dr. Katz says that though human sexuality education at the university level was popular in the 1960s and 1970s, it’s not as common now. And healthcare providers today are often reluctant to raise the topic because they’re concerned with appearing voyeuristic or worry about encouraging questions that they won’t be able to answer. And yet, Dr. Katz says, the conversation remains critical, as patients face feelings of isolation and decreased self-esteem.

“Most patients want validation, normalization, to know they are not alone,” says Dr. Katz. To that end she encourages healthcare providers to first give the patient permission to talk about sexuality. This can be as simple as opening the door with a statement like, “You know, people who have been through [your type of illness] often have questions about sexuality. How can I help you in this regard?” As follow-up, Dr. Katz says, providers can refer patients to the appropriate expert for intensive therapy.

Finding Solutions

Sharon Bober, PhD, director of the Perini Center’s Sexual Health Program at Dana Farber Cancer Institute in Boston, agrees that there is a lot of work that needs to be done to address the disparity between this big issue and the little attention it receives.

Dr. Bober says that cancer can leave deep scars, both literal and figurative. Depending on the illness and the treatment, side effects can range from a lack of libido to painful intercourse to erectile dysfunction to emotional distress over infertility or the loss of a body part. “From an emotional point of view, people feel terribly damaged,” she says.

And when conversations with healthcare providers about sexual side effects don’t occur, the problem is magnified: “Often women assume nothing can be done, especially if no one is talking about it.”

Dr. Bober says that there is a lot that can be done to manage symptoms, but the solutions aren’t always as readily available as they need to be. She often finds herself having conversations with patients about vaginal moisturizers, dilators, or lubricants only to ultimately have to refer them to the Internet to actually buy the products she has described. “In the [hospital’s cancer] boutique, you have 80,000 headscarves, but you can’t get lube,” Dr. Bober says.

But Dr. Bober stresses that sexual health goes beyond physical symptoms: “Sexuality is the interaction of physical health and emotional well-being.”

New Territory

For single survivors, tackling the world of dating can present new challenges in the wake of a diagnosis and treatment. Many report feeling vulnerable about their history of illness in new relationships and worry about sharing their experiences with a potential partner.

Dr. Katz says that her single patients often have questions like When do I tell? What do I tell? How do I tell? They also wonder about how to broach sensitive subjects like breast reconstruction and fertility.

In response to this common vulnerability among patient populations, several new dating Web sites have emerged that specifically cater to single survivors and those in active treatment.

One such site is called Prescription4Love.com. The site’s founder, Ricky Durham of Norcross, Georgia, says that his goal was to create a dating site that could also function as a social network for people with a wide range of illnesses. Ricky started the site after watching his brother Keith—whose Crohn’s disease necessitated a colostomy bag—endure the challenges of dating. Ricky says that Keith “was a good looking guy. He could meet girls, but he didn’t know when to tell them he had a colostomy bag.”

Ricky thought that maybe if his brother could meet a woman who also had Crohn’s disease, he might be able to enter into a relationship based on a mutual understanding of its related challenges. Keith passed away in 2004, but his story continues to serve as inspiration for the site, which now has 8,000 members worldwide diagnosed with diseases that range from herpes to diabetes to cancer.

Tracy Maxwell thinks sites like this are a good idea. “After treatment there are a lot of issues when you are single and a survivor,” she says. “Now I have scars. I probably can’t have kids. What does this mean in terms of not having found a partner by this age? Will this make it harder now that I have these black marks against me?”

Tracy says she has perused a similar site specifically for cancer survivors calledCisforcupid.com, but there were not a lot of people on it, and none in Denver. “I don’t do long-distance dating,” she says.

Dr. Bober says that, as is the case for anyone searching for a relationship, the question for survivors often becomes Where do you find a partner? The answer, she believes, is to “cast a wide net” and to avoid limiting your options. “It’s naive to think that because a person has the same illness they’ll be a match,” she says.

As far as the question of when to reveal a history of illness, Dr. Bober encourages patients to make individual choices about the timing but adds that the conversation really carries the same weight as those related to other important personal issues that you would want your partner to be aware of, including family or relationship history.

First, Know Yourself

“To enter a relationship, you have to be whole,” Dr. Katz says. “I think that before you start dating, you really have to be okay within yourself and have taken the time to mourn what you need to mourn—because you are changed. You are not the same person you were before.” To reclaim sexual health, she says, patients need to take the time to make sense of their experience and realize how they have been transformed.

And yet among the challenges that survivors face, there remain gifts. Dr. Katz says she feels humbled by the “heart-to-heart connectedness” she witnesses between couples who seek her services. In one recent session, a woman who had been sick admitted that she felt damaged and thought that her husband wouldn’t love her anymore. “He told her, ‘I love you regardless,’” says Dr. Katz. This type of unconditional love offers its own unique healing, allowing a patient to “fully realize that they are not alone.”